The Social
Security Administration's Efforts to Promote Employment for People
with Disabilities
New Solutions for Old Problems
National Council on Disability
November 30, 2005
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
This report is also available in alternative formats and on the
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Publication date: November 30, 2005
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The views contained in this report do not necessarily
represent those of the Administration as this and all NCD documents
are not subject to the A-19 Executive Branch review process.
Letter of Transmittal
November 30, 2005
The President
The White House
Washington, D.C. 20500
Dear Mr. President:
On behalf of the National Council on Disability (NCD),
I am pleased to submit this report, entitled The Social Security
Administration's Efforts to Promote Employment for People with Disabilities:
New Solutions for Old Problems. Under its congressional mandate,
NCD is charged with the responsibility to gather information on
the development and implementation of federal laws, programs, and
initiatives that affect people with disabilities.
Our nation's current disability benefit programs are based on a
policy principle that assumes that the presence of a significant
disability and lack of substantial earnings equate with a complete
inability to work. Americans with disabilities remain underemployed,
despite the fact that many are willing and able to work. Although
the Social Security Administration (SSA) has instituted a number
of incentives to reduce the numerous obstacles to employment faced
by its Supplemental Security Income (SSI) and Social Security Disability
Insurance (DI) beneficiaries, such efforts have had little impact
because few beneficiaries are aware of these incentives and how
they affect benefits and access to health care.
In recent times there has not been a comprehensive,
research-based examination of the practices that are most likely
to support the employment of SSI and DI beneficiaries. NCD undertook
this study to address that absence and found that the complex obstacles
to employment faced by SSA beneficiaries require a comprehensive
set of solutions. New approaches must be identified that emphasize
beneficiary control of career planning and the ability to access
self-selected services and supports. Public and private health care
providers must develop new collaborations and new approaches to
combining coverage from multiple sources to improve program efficiencies.
SSA must continue to work with the Rehabilitation Services Administration
and the Department of Labor to improve implementation of the Ticket
to Work program and identify new approaches that will overcome the
traditional inability of SSA beneficiaries to benefit from services
provided by the nation's employment and training programs. Secondary
and postsecondary educational institutions must emphasize benefits
counseling and financial management training as the foundation for
beneficiary self-direction and economic self-sufficiency. Federal
agencies and the business community must realize that collaborative
approaches to incorporating beneficiaries into the workforce are
needed as a way to reduce dependence on federal benefits while simultaneously
enhancing the productivity and competitiveness of large and small
business.
The recommendations discussed in this report need
to be addressed in policy and procedural modifications by both Congress
and the Social Security Administration to significantly address
the continuing number of SSA beneficiaries who never leave the SSI
and DI rolls, and to increase the number of beneficiaries who enter,
or reenter, the United States workforce.
Sincerely,
Lex Frieden, Chairperson
(The same letter of transmittal was sent to the President
Pro Tempore of the U.S. Senate and the Speaker of the
U.S. House of Representatives.)
National Council on Disability Members and
Staff
Members
Lex Frieden, Chairperson
Patricia Pound, First Vice Chairperson
Glenn Anderson, Ph.D., Second Vice Chairperson
Milton Aponte, J.D.
Robert R. Davila, Ph.D.
Barbara Gillcrist
Graham Hill
Joel I. Kahn, Ph.D.
Young Woo Kang, Ph.D.
Kathleen Martinez
Carol Novak
Anne M. Rader
Marco Rodriguez
David Wenzel
Linda Wetters
Staff
Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Julie Carroll, Senior Attorney Advisor
Joan M. Durocher, Senior Attorney Advisor
Martin Gould, Ed.D., Director of Research and Technology
Geraldine Drake Hawkins, Ph.D., Senior Program Analyst
Allan W. Holland, Chief Financial Officer
Pamela O'Leary, Sign Language Interpreter
Mark S. Quigley, Director of Communications
Mark E. Seifarth, Congressional Liaison
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Secretary
Acknowledgments
The National Council on Disability deeply appreciates
Dr. John Kregel and Dr. Beth Bader of Virginia Commonwealth University's
Department of Special Education and Disability Policy for the research
and development of this report.
Table of Contents
Executive Summary
Chapter I: Introduction
Overview of the SSDI and SSI Programs
Determining Eligibility for DI and SSI
Overview of the Problem
Response of Congress and the Social Security Administration to
the Problem
State Vocational Rehabilitation Agencies
Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA)
(P.L. 106-170)
The Ticket to Work and Self-Sufficiency Program
Expanded Availability of Health Care Services
Enhanced Work Incentives
SSA's Work Incentives Support Plan
Development of Work Incentives
Purpose of the Study
Research Methodology
Content of the Report
Chapter II: The Mission and Purpose
of the SSA Disability Benefit Programs
Introduction
Purpose of the Disability Benefit Programs
A Rigorous Test of Eligibility for SSA Disability Benefits
The Changing Societal View of Work Disability
The Problem
Policy Premises Underlying the Definition of Disability
Delinking the Concept of Disability from Work Incapacity
Recognizing the Concept of Partial Disability
Recognizing the Dynamic Nature of Disability
Providing Early Intervention Services
Attempts by SSA to Impact Its Definition of Disability Through
Modified Program Rules
The Urgent Need for Policy and Program Changes
Chapter III: Beneficiary Perspective
and Self-Direction
Introduction
The Problem
Customer Service
Health Care Concerns
Deficiencies in the Wage Reporting System Resulting in Overpayments
Complexity of Program Rules
Insufficient Access to Timely and Accurate Earnings Data
Marriage Penalty
Previous Attempts by Congress and SSA to Improve Customer Service
and Beneficiary Control
The Ticket to Work and Work Incentives Improvement Act
SSA's Work Incentives Support Plan
Recommendations for SSA Policy Change: Beneficiary Perspective
and Self-Direction
Recommendations Specific to Customer Service
Recommendations Specific to the Ticket to Work Program
Recommendations Specific to Facilitating Beneficiary Choice
Recommendations Specific to Reducing SSA Overpayments to Beneficiaries
Recommendations for Eliminating the Marriage Penalty
Summary
Chapter IV: Income Issues and Incentives
Introduction
The Problem
Employment Disincentives in the Disability Benefit Programs
Complex Rules Govern the Effect of Income on Disability Benefits
Harsh Income and Resource Limits Create Barriers to Employment
Many New Beneficiaries Who Could Work Delay Employment Out of
Fear of Benefit Loss
Delays in Accessing Health Insurance and Risk of Losing Health
Insurance Once Obtained
Previous Attempts by Congress and SSA to Impact Income Issues
and Incentives
Efforts to Lessen the Impact of the SGA "Cash Cliff"
Efforts to Allow Increased Asset Development
Recommendations for SSA Policy Changes: Income Issues and Incentives
Recommendations for Easing the SGA Cash Cliff for DI Beneficiaries
Recommendations for Reducing Restrictions on Assets for SSI Beneficiaries
Recommendations for Improving Access to Health Care for DI Beneficiaries
Recommendations for Decreasing the Complexity of the DI/SSI Program
Rules Governing Income and Resources
Summary
Chapter V: Coordination and Collaboration
Among Systems
Introduction
Health Care System
The Problem
Previous Attempts by Congress and SSA to Impact the Health Care
System
Vocational Rehabilitation System
The Problem
Previous Attempts by Congress and SSA to Impact the Rehabilitation
System
Employment and Training System
The Problem
Previous Attempts by Congress and SSA to Impact the Federal Employment
and Training System
Educational System
The Problem
Previous Attempts by Congress and SSA to Impact the Educational
System and Youth
Employers, Business Community, and Private Insurance Industry
The Problem
Previous Attempts by Congress and SSA to Impact the Employer,
Business, and Private Insurance Systems
Recommendations for SSA Policy Changes
Collaborating with the Health Care Systems
Vocational Rehabilitation System
Federal Employment and Training System
Educational System
Employers, Business Community, and Private Insurance Industry
Summary
Chapter VI: Summary of Findings and
Recommendations
Research Question 1
Research Question 2
Research Question 3
Research Question 4
Beneficiary Perspective and Self-Direction
Customer Service
Ticket to Work Program
Facilitating Beneficiary Choice
Reducing SSA Overpayments to Beneficiaries
Eliminating the Marriage Penalty
Income Issues and Incentives
Easing the SGA Cash Cliff for DI Beneficiaries
Reducing Restrictions on Assets for SSI Beneficiaries
Decreasing the Complexity of the DI/SSI Program Rules Governing
Income and Resources
Coordination and Collaboration Among Multiple Public and Private
Systems
Health Care System
Vocational Rehabilitation System
Federal Employment and Training System
Educational System
Employers, Business Community, and Private Insurance Industry
References
Appendix A: Methodology
Appendix B: Results of Literature
Review to Identify Evidence-Based Practices
Appendix C: Mission of the National
Council on Disability
Executive Summary
Americans with disabilities remain underemployed,
despite the fact that many are willing and able to work. Although
the Social Security Administration (SSA) has instituted a number
of incentives to reduce the numerous obstacles to employment faced
by its Supplemental Security Income (SSI) and Social Security Disability
Insurance (DI) beneficiaries, such efforts have had little impact
because few beneficiaries are aware of these incentives and how
they affect benefits and access to health care.
Introduction to the Problem
Social Security beneficiaries with disabilities must
spend months or even years convincing SSA that they are unable to
work as a condition of eligibility. Yet, upon their receipt of benefits,
SSA begins to communicate to beneficiaries that work is an expectation
for them. Congress and SSA have developed a variety of work incentives
and special programs designed to encourage beneficiaries to attempt
to obtain and sustain employment. Yet SSA's efforts to eliminate
work disincentives have often added to the complexity of the entire
program, confusing beneficiaries and making them leery of any actions
that might unknowingly jeopardize their benefits.
Current SSA benefit amounts are quite small and merely
allow beneficiaries to live at a basic subsistence level. SSI resource
limits make it very difficult to accumulate the financial resources
necessary to move toward economic self-sufficiency. Tying eligibility
for Medicaid or Medicare to eligibility for SSA benefits forces
individuals with high-cost medical needs who could otherwise work
to choose between pursuing a career and retaining the medical insurance
that sustains their very lives.
The fear of losing benefits and medical insurance
through an unsuccessful employment attempt starts well before adulthood
with SSI beneficiaries. Many SSI recipients first apply for benefits
as children while enrolled in public schools. These individuals
often remain on the rolls well into adulthood, with very few transitioning
from high school into substantial employment after graduation (GAO,
1996b; GAO, 1998b). Failure to focus on Social Security and other
public benefits during transition is not only a missed opportunity,
but harm may be caused when students and family members are not
educated or prepared for the effect of earnings on cash benefits
and medical insurance (Miller and O'Mara, 2003).
There is also the problem with poor educational attainment
of DI beneficiaries who enter the disability system later in life.
Efforts to help this population return to work are stymied by their lack
of education and marketable job skills -- particularly in today's
highly competitive information economy. It is now more important
than ever that people of all ages have access to higher education
and the financial means with which to pay for training and education
(Moore, 2003).
Response of Congress and the Social Security Administration
to the Problem
Well aware of the enormity and seeming intractability
of this problem, Congress and SSA have initiated multiple efforts
to promote employment and return to work among SSA beneficiaries.
In recent years, a number of work incentives for SSI and DI beneficiaries
have been implemented, allowing individuals to keep more of their
earnings while retaining their benefits. Work incentives are aimed
at reducing the risks and costs associated with the loss of benefit
support and medical services as a result of returning to work. Some
of the most commonly used incentives are Section 1619(a) and (b)
provisions; impairment-related work expenses (IRWE); trial work
period (TWP); Plan for Achieving Self-Support (PASS); extended period
of eligibility (EPE); and continued payment under a vocational rehabilitation
program.
However, despite efforts by SSA and the Federal Government
that have led to more favorable conditions for returning to work,
most SSI and DI beneficiaries continue to stay on the disability
rolls. The work incentives offered by SSA remain largely underutilized;
in March 2000, of the total number of eligible working beneficiaries,
only 0.3 percent were using PASS, 2.8 percent were using IRWEs,
7.5 percent were receiving Section 1619(a) cash benefits, and 20.4
percent were receiving Section 1619(b) extended Medicare coverage
(SSA, 2000). The major reasons cited for the extreme underutilization
of these work incentives by beneficiaries were (1) few beneficiaries
knew that the work incentives existed, and (2) those who were aware
of the incentives thought they were complex, difficult to understand,
and of limited use when entering low-paying employment (GAO, 1999).
The Office of Program Development and Research (OPDR)
and the Office of Employment Support Programs (OESP) under the Deputy
Commissioner for Disability and Income Security Programs are primarily
responsible for the implementation of multiple components of the
Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA).
The TWWIIA provides a number of new program opportunities and work
incentives for both SSI and DI beneficiaries, including the Ticket
to Work (TTW) and Self-Sufficiency Program; development of a work-incentives
support plan through the creation of national network of Benefits
Planning, Assistance, and Outreach (BPAO) programs; and new work
incentives, including expedited reinstatement (EXR) of benefits
and postponement of continuing disability reviews.
The National Council on Disability's Study of the Problem
It is not known whether the new TWWIIA programs will
have any more success than past attempts by SSA to impact the employment
rate and earnings of beneficiaries. What is clear is that there
has not been, in recent times, a comprehensive, research-based examination
of the practices that are most likely to support the employment
of SSI and DI beneficiaries. This study has been undertaken in response
to the need for such a comprehensive analysis. The study was designed
to address four research questions:
- What are the evidence-based practices that promote the return
to work of working-age beneficiaries of DI and SSI programs?
- What policy changes are needed, given recent trends in program
participation and employment?
- Are there proven and documented practices that work better
for some populations of people with disabilities and not others?
- Which factors ensure that documented and evidence-based practices
could be adapted/ adopted by SSA and other entities that seek
to ensure the employment of people with disabilities? Which factors
prevent adaptation/adoption?
A four-step approach was taken to implement the study.
First, a comprehensive literature synthesis was completed through
a review of published and unpublished literature. Second, detailed
structured interviews were conducted with key stakeholders, including
SSA beneficiaries, federal SSA officials, representatives of other
federal agencies, consumer and advocacy organizations, service organizations,
community service providers, and business representatives. Third,
a preliminary list of findings, evidence-based practices, and recommendations
based on the literature review and structured interviews was used
to develop seven topic papers. These papers were used to facilitate
discussion and obtain reaction from participants who were invited
to a consensus-building conference at the end of January 2005. Individuals
with disabilities (including current and former SSI and DI beneficiaries),
advocacy organizations, service providers, and policymakers who
attended the conference had the opportunity to further develop the
recommendations that appear throughout the report.
Major Findings of the Study
Purpose and Mission of SSA's Disability Benefit Programs
Our nation's current disability benefit programs are
based on a policy principle that assumes that the presence of a
significant disability and lack of substantial earnings equates
to a complete inability to work. The current SSA eligibility determination
process thwarts return-to-work efforts, because applicants are required
to demonstrate a complete inability to engage in substantial gainful
activity (SGA) in order to qualify for benefits. The definition
fails to recognize that, for many consumers, disability is a dynamic
condition. The length of the application process in our current
programs actually contributes to the ineffectiveness of our return-to-work
efforts and our inability to intervene early in the disability process.
For DI individuals, lack of a gradual reduction in
benefits as earnings increase and lack of attachment to the DI and
Medicare programs after an individual has maintained employment
for an extended period of time make return to work unfeasible. For
SSI beneficiaries, the program's stringent asset limitations thwart
efforts toward asset development and economic self-sufficiency.
Inconsistencies in program provisions lead to confusion and inequities
for beneficiaries of both programs.
Beneficiary Perspective and Self-Direction
To receive benefits, applicants must characterize
their situation as an inability to work long-term. They must demonstrate
that they are unable to work in any significant way. Once they are
determined to be eligible for disability benefits, beneficiaries
face a host of complex program rules and policies related to continuing
eligibility for cash benefits and access to health care. Many beneficiaries
are confused or uninformed about the impact of return to work on
their life situation and have shied away from opportunities to become
self-sufficient through work.
Beneficiaries report that their experience with SSA
is often unfavorable. Insufficient staffing has led to long lines
and poor services. Misinformation is frequent, and mistrust common.
Local SSA field office staff members are overburdened with accurate
and timely processing of post-entitlement earnings reporting, which
often leads to overpayments to beneficiaries. Beneficiaries do not
trust SSA to make appropriate and timely decisions. There is prevalent
fear that work attempts would result in either a determination that
the disability had ended or the need to repay benefits.
SSA has implemented many legislative changes, program
modifications, training initiatives, and automation efforts in the
past 15 years to improve its customer service. Although efforts
to streamline processing and improve customer service should be
lauded, they have not significantly improved beneficiaries' ability
to direct and control their own careers.
Income Issues and Incentives
A multitude of rules regarding employment income,
continued eligibility for disability benefits, waiting periods,
earnings reporting, management of benefit payments, and management
of assets (among many others) come into play once an individual
is determined to be eligible for DI or SSI. SSA rules regarding
employment and income are such that many beneficiaries will actually
be worse off financially if they work full time. Disincentives to
employment in the current benefits programs include a sudden loss
of cash benefits as a result of earnings above the SGA level for
DI beneficiaries. Despite a number of programs that are designed
to encourage asset building among SSI beneficiaries, it remains
very difficult for beneficiaries to save and accumulate resources
under SSI, which contributes to long-term impoverishment and dependence
on public benefits.
Over the past decade, SSA has devoted considerable
resources to promoting employment and return to work among SSI and
DI beneficiaries. The agency has aggressively implemented a number
of new initiatives authorized under the TWWIIA, such as the Ticket
to Work and Self-Sufficiency Program, the BPAO program, area work
incentive coordinators, and Protection and Advocacy for Beneficiaries
of Social Security. It has modified program rules to provide increased
work incentives to beneficiaries, such as the EXR and protection
from continuing disability review provisions of TWWIIA, indexing
the SGA threshold, and increasing the level of earnings allowed
during the Trial Work Period (TWP). The agency has also launched
or is planning to initiate a number of demonstrations that will
test the efficacy of new modifications to work incentives within
the DI program and services targeted toward youth with disabilities.
Yet, while SSA has taken steps to improve its return-to-work services
through the provision of work incentives, these efforts are hampered
by the underlying program rules that were designed for individuals
assumed to be permanently retired from the workforce and individuals
who were viewed as unable or unlikely to work in the future.
Coordination and Collaboration Among Systems
Expansion of the disability programs and the poor
employment rates of adults with disabilities have become major concerns
for SSA and disability policymakers across the country. Too often,
the alarming growth of the Social Security disability rolls has
been represented and perceived as SSA's problem to solve in isolation,
when in fact it is a larger societal problem with myriad complex
causes. Receipt of Social Security disability benefits is merely
the last stop on a long journey that many people with disabilities
make from the point of disability onset to the point at which disability
is so severe that work is not possible. All along this journey,
individuals encounter the policies and practices of the other systems
involved in disability and employment issues. When these systems
fail to stem the progression of disability or work at cross-purposes
with one another to prevent successful employment retention or return
to work, it is the Social Security disability system that bears
the eventual brunt of this failure. Any meaningful effort to slow
down or reverse this relentless march toward federal disability
benefits will require significant and sustained collaboration and
coordination among SSA and the other federal agencies with a stake
in developing disability and employment policy.
The complex obstacles to employment faced by SSA beneficiaries
require a comprehensive set of solutions. New approaches must be
identified that emphasize beneficiary control of career planning
and the ability to access self-selected services and supports. Public
and private health care providers must develop new collaborations
and new approaches to combining coverage from multiple sources to
improve program efficiencies. SSA must continue to work with the
Rehabilitation Services Administration (RSA) and the Department
of Labor (DOL) to improve implementation of the TTW program and
identify new approaches that will overcome the traditional inability
of SSA beneficiaries to benefit from services provided by the nation's
employment and training programs. Secondary and postsecondary educational
institutions must emphasize benefits counseling and financial management
training as the foundation for beneficiary self-direction and economic
self-sufficiency. Federal agencies and the business community must
realize that collaborative approaches to incorporating beneficiaries
into the workforce are needed as a way to reduce dependence on federal
benefits while simultaneously enhancing the productivity and competitiveness
of large and small business.
Recommendations
A total of 38 specific recommendations have been developed
in the areas of Beneficiary Perspective and Self-Direction, Income
Issues and Incentives, and Coordination and Collaboration Among
Multiple Public and Private Systems. The recommendations are presented
and justified in Chapters III, IV, and V of the report, and a complete
list is provided in Chapter VI. The key recommendations resulting
from the study are summarized below.
Beneficiary Perspective and Self-Direction
Customer Service - SSA should
take immediate steps to improve the services provided to beneficiaries
by improving the accessibility of SSA field offices and Web sites;
redesigning field office personnel roles, staffing patterns and
work assignments; continuing efforts to automate work reporting
procedures; and enhancing outreach efforts to beneficiaries.
Ticket to Work Program -
Congress and SSA should address current shortcomings in the TTW
program by (1) expanding Ticket eligibility to include beneficiaries
whose conditions are expected to improve and who have not had at
least one continuing disability review (CDR), childhood SSI beneficiaries
who have attained age 18 but who have not had a redetermination
under the adult disability standard, and beneficiaries who have
not attained age 18; (2) modifying the TTW regulations to ensure
that Ticket assignment practices do not violate the voluntary nature
of the program and beneficiary rights to grant informed consent;
and (3) implementing a strong national marketing program to inform
beneficiaries about TTW and other SSA programs.
Facilitate Beneficiary Choice
- Congress should authorize and direct SSA, the Rehabilitation Services
Administration (RSA), the Centers for Medicare and Medicaid Services
(CMS), the Department of Housing and Urban Development (HUD), and
the Department of Labor Employment and Training Administration (DOLETA)
to develop and implement an integrated benefits planning and assistance
program that coordinates resources and oversight across several agencies
that enables beneficiaries to access benefit planning services within
multiple federal systems. Congress should also authorize and direct
these agencies to consider changes to the existing BPAO initiative
to improve the accuracy and quality of services provided to individual
beneficiaries.
Reduce SSA Overpayments to Beneficiaries
- Congress and SSA should implement a series of procedural reforms
to reduce overpayment to beneficiaries by increasing the use of
electronic quarterly earnings data and automated improvements to
expedite the processing of work activity and earnings; piloting
the creation of centralized work CDR processing in cadres similar
to PASS and Special Disability Workload Cadres; and enhancing efforts
to educate beneficiaries on reporting requirements, the impact of
wages on benefits, and available work incentives.
Eliminate the Marriage Penalty
- Congress and SSA should undertake a complete review of the SSI
program and make program modifications that eliminate the financial
disincentive to marriage inherent in the present program, including
amending the current Title XVI disability legislation to modify
the manner in which 1619(b) eligibility is applied to eligible couples.
Income Issues and Incentives
Ease the SGA Cash Cliff for DI Beneficiaries
- Congress should modify the current Title II disability legislation
to eliminate SGA as a post-entitlement consideration for continued
eligibility for Title II disability benefits and provide for a gradual
reduction in DI cash benefits based on increases in earned income.
Reduce Restrictions on Assets for
SSI Beneficiaries - Congress should direct SSA to (1) develop
and test program additions and regulatory modifications that will
enable SSI beneficiaries to accumulate assets beyond existing limits
through protected accounts and other savings programs, and (2) change
current program rules and work with other federal agencies to modify
and expand the value of individual development account (IDA) programs
to SSA beneficiaries.
Decrease the Complexity of the DI/SSI
Program Rules Governing Income and Resources - Congress should
direct SSA to (1) simplify regulatory earnings definitions and wage
verification processes so that they are consistent across the SSI
and DI programs, and (2) direct SSA to modify regulations related
to the treatment of earnings in the DI program by applying the same
rules currently applied in the SSI program.
Coordination and Collaboration Among Multiple Public
and Private Systems
Health Care Systems - Centers
for Medicare and Medicaid Services (CMS) and SSA should work together
closely to (1) modify existing program regulations in order to uncouple
Medicare and Medicaid coverage from DI/SSI cash payments; (2) identify
and eliminate the many employment disincentives currently built
into the Medicaid waiver, Medicaid buy-in, and Health Insurance
Premium Payment (HIPP) programs; (3) expand benefits counseling
services to include the full range of financial education and advisement
services; and (4) work collaboratively with public and private insurance
providers and business representatives to design public-private
insurance partnerships that will expand access to health care for
individuals with disabilities.
Vocational Rehabilitation (VR) System
- SSA should modify TTW program regulations to allow the SSA's traditional
VR cost reimbursement program to carry on as a parallel program
to the Employment Network (EN) outcome or outcome-milestone payment
mechanisms, and ensure that an EN is able to accept Ticket assignment
from a beneficiary, refer that individual to the VR agency for needed
services, and not be required to reimburse the VR agency for those
services.
Federal Employment and Training
System - Congress, SSA, and the Department of Labor should
undertake an analysis of the impact of allowing DOL One-Stop Career
Centers to receive cost reimbursement payments for successfully
serving beneficiaries under the TTW program, evaluate the impact
of the Workforce Investment Act (WIA) performance standards on beneficiary
participation in WIA programs, and design and test a set of waivers
that will assist beneficiaries in accessing and benefiting from
WIA core and intensive services, as well as individual training
accounts.
Educational System - Congress
should direct SSA to work with the Department of Education (ED)
to (1) ensure that benefits planning and financial management services
are available to the transition-aged population; (2) expand the
current student earned income exclusion (SEIE) and the Plan for
Achieving Self-Support (PASS) to encourage involvement of SSA beneficiaries
in postsecondary education and training; and (3) implement a policy
change that would disregard all earned income and asset accumulation
limits for beneficiaries who are transitioning from secondary education
to postsecondary education or employment for at least one year after
education or training is completed.
Employers, Business Community, and
Private Insurance Industry - Congress should direct SSA and
the Department of the Treasury to (1) evaluate the possible effects
of a disabled person tax credit as a means of increasing the use
of disability management programs in business to prevent progression
of injured and disabled workers onto the public disability rolls,
and (2) collaborate with Department of Labor's Employment and Training
Administration (DOLETA), the Small Business Administration (SBA),
and the Rehabilitation Services Administration (RSA) to develop
and implement an employer outreach program targeted toward small
and mid-size businesses.
Chapter I: Introduction
Overview of the SSDI and SSI Programs
The long-debated concept of social insurance for persons
with disabilities was first set into action by the Social Security
Amendments of 1956, with the establishment of the Social Security
Disability Insurance (SSDI) program. Since its original enactment,
SSDI (referred to in this report as DI) has been examined and modified
repeatedly over the decades. In the beginning, monthly disability
benefits were provided only for disability-insured workers between
the ages of 50 and 65 who had an "inability to engage in any
substantial gainful activity by reason of any medically determinable
physical or mental impairment which can be expected to result in
death or to be of long-continued and indefinite duration" and
for children of retired or deceased insured workers who developed
a disability before the age of 18. There was a six-month waiting
period from the end of work until the beginning of DI benefit payments
(SSA, 1986).
Over the course of the next few years, legislation
was enacted to make various amendments to the DI program, many of
which increased both eligibility for disability benefits and benefit
levels. The 1957 regulations added the consideration of nonmedical
factors to the evaluation of disability, including education, training,
and work experience. The Social Security Amendments of 1958 expanded
DI to include benefits for the dependents of workers with disabilities.
In 1960, the minimum age requirement of 50 years was removed for
DI beneficiaries. That same year, a nine-month trial work period
was established, allowing beneficiaries to test their ability to
gain employment without losing their benefits. The Social Security
Amendments of 1965 replaced the requirement that the impairment
be of "long-continued and indefinite duration" with the
condition that it was "expected to last for a continuous period
of not less than 12 months" (SSA, 1986).
Such changes led to an increasing public awareness
of DI, along with significant growth in both the size and complexity
of the program. As a result, the Social Security Amendments of 1967
were passed to clarify that a claimant may only be found to have
a disability "if his physical or mental impairment or impairments
are of such severity that he is not only unable to do his previous
work but cannot, considering his age, education, and work experience,
engage in any other kind of substantial gainful work which exists
in the national economy, regardless of whether such work exists
in the immediate area in which he lives, or whether a specific job
vacancy exists for him, or whether he would be hired if he applied
for work." The Social Security Amendments of 1972 brought additional
changes to DI, including a reduction in the waiting period to begin
benefit payments from six to five months, and an extension of the
definition of adult children with disabilities to those whose condition
developed before age 22 (SSA, 1986).
The most momentous aspect of the 1972 Amendments was
the creation of the Supplemental Security Income (SSI) program,
which replaced various state programs of public assistance effective
January 1, 1974. In contrast to DI, eligibility for SSI payments
was needs-based and was available to individuals who had attained
age 65 or who had a disability with little income and few resources,
regardless of their work history, to ensure that they were afforded
a minimum level of monthly income to meet expenses. SSI operated
under the same definition of disability used for DI benefits, with
a modification for SSI claimants under age 18. Other provisions
applicable to DI were incorporated into the new program as well,
including the nine-month trial work period and the suspension of
benefit payments upon refusal to accept rehabilitation services.
Medicare and Medicaid protection for Social Security disability
recipients were also provided for the first time as a result of
the 1972 Amendments (SSA, 1986).
The number of people on the disability rolls and the
costs of both the DI and SSI programs increased substantially during
the 1970s. Between 1970 and 1978, the number of workers on the DI
rolls nearly doubled, and expenditures quadrupled. It was widely
believed that factors such as high unemployment rates, changing
attitudes toward disability, high benefit levels for beneficiaries
who did not work, and inadequate administrative control were collectively
responsible for such unprecedented growth. Consequently, a number
of proposals for disability reform legislation were introduced in
Congress in the latter half of the decade with the intent of removing
the work disincentives that were purportedly built into the disability
program, as well as improving program administration (SSA, 1986).
To that end, the Social Security Disability Amendments
of 1980 included changes to the DI benefit structure and procedures
for strengthening incentives for rehabilitation and return to work.
A cap was placed on the benefits that could be paid to DI beneficiaries
and their families, to prevent excessive replacement rates from
discouraging employment. In addition, work incentives were augmented
in both DI and SSI, and those who completed the nine-month trial
work period were now provided with an additional 15-month period
during which they could test their ability to maintain employment
while retaining disability status, with benefits automatically reinstated
in the event that the work attempt failed. Furthermore, impairment-related
work expenses incurred by the individual were no longer counted
when determining whether earnings could be counted as substantial
gainful activity (SGA) (SSA, 1986).
In passing the 1980 legislation, Congress also aimed
to strengthen federal management of the state disability determination
process, eliminating the current system of individual state agreements
in order to ensure more efficient and consistent administration
of the disability programs throughout the nation. Furthermore, in
an effort to maintain the integrity of the disability programs,
Congress approved a requirement that the status of all disability
beneficiaries be reviewed at least once every three years to assess
their continuing eligibility for benefits. Prior to this highly
contested change, such continuing disability reviews (CDRs) were
only conducted in selected cases where the individual's condition
was expected to improve, or where the individual had returned to
work. Consequently, the Social Security Administration (SSA) found
nearly one in two people reviewed ineligible for benefits, and for
many of these people, benefits were terminated. Shortly thereafter,
numerous hearings were held regarding the effect the controversial
CDRs and subsequent terminations were having on beneficiaries, as
well as concerns regarding the standards applied in evaluating disability
(SSA, 1986).
In response, the Social Security Disability Benefits
Reform Act of 1984 set forth a new standard of review for the termination
of disability benefits, making it more difficult to terminate a
beneficiary by requiring substantial evidence that an individual's
impairments had medically improved to the point where he or she
could now perform substantial gainful activity. Furthermore, the
Act specified that in determining eligibility, the collective effect
of all of an individual's impairments must now be taken into account,
even if no single impairment qualified as "severe." In
addition to providing explicit standards of disability review, the
1984 legislation had the goals of improving the accuracy and the
nationwide uniformity of decisions in disability programs, and returning
disability policymaking to federal legislators. Thus, this Act was
viewed as corrective or remedial rather than driven by reform.
In the past two decades, continued progress has gradually
been made toward increasing the availability of work incentives
and return-to-work services for disability recipients, carried out
within the context of the broader disability policy climate aimed
at expanding the vocational and social prospects of persons with
disabilities. Given the contradictions inherent in providing vocational
services to a population of individuals who have already been required
to demonstrate an inability to work in order to qualify for disability
insurance, the ultimate effectiveness of such employment-focused
endeavors within the current Social Security system is frequently
regarded with skepticism.
Determining Eligibility for DI and SSI
Under both the Social Security (Title II) and SSI
(Title XVI) programs, there are two sets of requirements that must
be satisfied before entitlement: (1) does the individual meet the
eligibility criteria other than disability, and (2) does the person
meet the disability standard? When applying for benefits, potential
beneficiaries must prove the former to SSA. Applicants must prove
their age, relationship to the person who paid into the Social Security
system, marital status, work history, and, for SSI, their income
and resources.
The other determination, that of disability status,
is made by contracted state agencies (20 CFR 404.1503). The disability
determination process is complex and lengthy. There is inconsistency
from state agency to state agency (GAO, 2004a), and determinations
that an individual is not disabled are often appealed, leading to
lengthy waits before final resolution. For example, a table from
the SSA Annual Statistical Report for 2003 (SSA, 2004a) offers data
on the outcomes of applications filed between 1992 and 2003. According
to that data, 22,062 applications from 2000 were still pending in
mid-2003.
Successful applicants for benefits receive one of
four types of disability payments administered by SSA. The largest
program, DI, is authorized by Title II of the Social Security Act.
It is paid to former workers who contributed Social Security taxes
on work income. The other two disability programs under Title II
of the Social Security Act are Disabled Widow(er)s Benefits (DWB)
and Childhood Disability Benefits (CDB). These are paid to the survivors
or dependents of workers who paid Social Security taxes and then
died, became disabled, or retired from the workforce. The fourth
disability program, SSI, is a federal poverty program for individuals
who are over age 65, blind, or disabled; it is authorized by Title
XVI of the Social Security Act. All four programs use the same definition
of disability, which follows:
(a) the law defines disability as the inability
to do any substantial gainful activity by reason of any medically
determinable physical or mental impairment which can be expected
to result in death or which has lasted or can be expected to last
for a continuous period of not less than 12 months. To meet this
definition, you must have a severe impairment(s) that makes you
unable to do your past relevant work (see §404.1560(b)) or
any other substantial gainful work that exists in the national
economy (20 CFR 404.1503).
Currently, substantial gainful activity is work effort
valued above $1,380 per month for blind individuals, and valued
above $830 per month for beneficiaries who are not blind (2005 limits).
The word "valued" refers to a host of complex work incentives
that are used to trim the amount of gross wages earned in a month
down to the amount considered to be "countable earnings."
The countable earnings are then compared to the financial guidelines
for substantial gainful activity (SGA) stated above.
SSI and the Social Security disability programs authorized
under Title II of the Social Security Act (DI, CDB, and DWB) are
currently the largest federal programs providing cash payments to
people with disabilities. In 2002, about 6.5 million persons received
Social Security benefits based on disability. This represented an
increase from 6.2 million beneficiaries in 2001. In addition, nearly
4.8 million adults and children received SSI due to blindness or
disability. The number of blind or disabled adults ages 18 to 64
rose by 1.7 percent between December 2001 and December 2002, while
the number under age 18 increased by 3.7 percent. Benefit payments
from the DI trust fund increased by 10.2 percent, from $59.6 billion
in 2001 to $65.7 billion in 2002. Total SSI payments were $34.6
billion in 2002, up 4.6 percent from 2001 (SSA, 2004b).
The steady growth pattern of the DI and SSI rolls
seen in the past few years is not a new phenomenon. As early as
1994, the Government Accounting Office (GAO), now called the Government
Accountability Office, was investigating the growth in Social Security's
disability programs. In a study released in February 1994, the GAO
reported that in the three years between 1989 and 1992, DI applications
rose by a third, and almost half the applicants in 1992 succeeded
in obtaining benefits. The GAO also found that, once on the rolls,
beneficiaries were staying longer. Between 1985 and 1992, the number
of beneficiaries who had been on the rolls more than 15 years grew
by an alarming 93 percent. In addition, while the total number of
DI terminations continues to increase as the rolls swell, termination
rates as a percentage of those on the rolls have steadily declined.
Terminations from the DI program averaged approximately 12 percent
during the 1988-1989 period, but stood at only 9.5 percent by 1994.
SSA research concluded that termination rates were declining for
three main reasons. First, the younger average age of beneficiaries
over the past 10-15 years has led to a lower number of conversions
to retirement and terminations due to death. Second, the decline
in the number and rate of medical CDRs has been a significant problem
(SSA, 1996). Finally, terminations from the disability programs
due to employment are almost nonexistent. SSA statistics cited in
a 1998 GAO report estimate that fewer than 1 in every 500 DI beneficiaries
left the rolls by returning to work (GAO, 1998).
Considering the prevalence of poverty among beneficiaries
of DI and SSI benefits, it was not surprising that, according to
a 1994 Harris poll conducted for the National Organization on Disability,
79 percent of individuals who had a disability stated that they
wanted to work. Although the criteria defining disability were far
less stringent than those used by SSA, the poll still strongly indicated
that people with disabilities wanted to work. Unfortunately, a very
small number of individuals receiving benefits, consistently less
than one-half of 1 percent, successfully left the benefit roles
through work (SSA, 1999).
Overview of the Problem
Americans with disabilities remain underemployed,
despite the fact that many are willing and able to work. Although
SSA has instituted a number of incentives to reduce the numerous
obstacles to employment faced by its beneficiaries, such efforts
have had little impact because few beneficiaries are aware of these
incentives and how they affect eligibility and benefits. The variety
of complex issues surrounding disability policy and the provision
of long-term disability benefits has been documented repeatedly.
Such issues highlight the need to find adequate solutions that will
allow Americans with disabilities to recognize their unfulfilled
potential in the workforce.
Very few beneficiaries ever leave SSA rolls (SSA,
1999; GAO, 1996a; GAO, 1996b; GAO,1996c). There is a lack of temporary
options for cash support, health care, and rehabilitation within
SSA programs, making it very difficult for beneficiaries to gain
financial independence. Ironically, the employment supports that
could potentially enable a beneficiary to remain off the disability
rolls by returning to work or entering the workforce are not available
until after a lengthy determination procedure has been completed,
at which point the individual has essentially proved that he or
she is unable to work. Indeed, less than one-half of 1 percent of
SSI and DI beneficiaries leave the rolls to obtain employment (SSA,
1999; GAO, 1996c).
The problems are well-known and thoroughly documented.
Medical advances save lives but increase the number of individuals
with functional limitations to a degree that it makes it difficult
for them to obtain and maintain employment. Societal and employer
attitudes, cyclical fluctuations in the economy, and rapidly changing
workplace demands in our information age economy lead to discriminatory
practices that arbitrarily, unnecessarily, and sometimes illegally
exclude individuals from the workforce. Employers and insurance
companies frequently and knowingly design policies and programs
that shift the cost of rehabilitating injured workers to public
programs. Many of these programs simply pay individuals to remain
in a dependent, unemployed status without making any authentic attempt
to provide them with the simple services and supports that would
enable them to reenter employment and pursue their chosen careers.
The situation for individuals with lifelong disabilities
is equally bleak. Special educators, physicians, and clinicians
of all types bombard students and their families with misinformation
regarding the effect of disability on their long-term employment
opportunities. Over time, these myths create unwarranted low expectations
that prevent children and adolescents with disabilities from viewing
themselves as able workers who can dream about their future careers
with excitement and hope. Special education programs and secondary
schools fail to prepare students to obtain and succeed in complex
jobs in the local economy. The "system" forces students
and their families to pursue SSI eligibility as the only path by
which they can secure post-school access to employment and residential
supports through the home and community-based waiver program, which
by definition perpetuates the notion that these otherwise capable
individuals are frail, dependent, and unable to maintaining even
basic employment.
Even the very programs that are
purported to assist individuals with disabilities who are temporarily
unable to work often place these individuals in a cycle of dependence.
Current benefit amounts merely allow individuals to live at a basic
subsistence level, never acquiring enough resources to allow them
to pursue occupational or educational goals, and even economically
punishing individuals who attempt to earn or save. Tying eligibility
for Medicaid or Medicare to eligibility for SSA benefits forces
individuals with high-cost medical needs who could otherwise work
to choose between pursuing a career and retaining the medical insurance
that sustains their very lives. The ponderous complexity of post-entitlement
rules and work incentives has forced Congress and SSA to create
a large cadre of benefits specialists whose job is to explain to
beneficiaries the otherwise incomprehensible rules and regulations
that actually exist to facilitate their entry into employment while
they receive benefits.
The disability determination process
is upsetting, adversarial, and extremely inconsistent. Both
the timeliness and the uniformity of SSA's disability determination
process leave much to be desired. Decisions often take an extremely
long time to process, and individuals who appeal after initially
being denied benefits often have to wait nearly another full year
before a final hearing decision is reached. Furthermore, there are
often significant discrepancies between the initial decisions and
those made at the hearings level (GAO, 2004a).
The culture of SSA is not work-friendly.
Individuals must spend months or even years convincing SSA that
they are unable to work as a condition of eligibility, yet upon
receipt of benefits, SSA does a complete about-face and begins to
communicate to beneficiaries that work is an expectation for them.
Those individuals who do choose to work are frequently penalized.
Individuals who obtain employment and conscientiously report their
earnings to SSA frequently continue to receive benefits because
SSA simply does not devote the resources necessary to track reported
earnings and make timely modifications to beneficiary payments.
The resulting overpayments create a terrible burden on individuals
and frequently on their families, and lead individuals who could
otherwise work to remain unemployed to avoid the economic hardship
created by overpayments. Benefit overpayments typically lead both
to substantial administrative and financial burdens for SSA and
to frustration and possible sudden termination of benefit eligibility
for beneficiaries. Although recent efforts by SSA have been undertaken
to address this issue, numerous challenges remain (Livermore, 2003).
Beneficiaries who attempt to work
may actually be threatening their program eligibility and health
care. Individuals with very significant disabilities who
may wish to make an initial work attempt believe that working even
a few hours each week on a trial basis might lead to SSA initiating
a CDR that could jeopardize their benefit payments before they have
had a chance to establish a stable employment situation. Even transition-aged
beneficiaries fear that working while in high school may jeopardize
their ability to retain SSI benefits after their age 18 redetermination.
Their sincere efforts to prepare for employment after exiting school
may actually lead them to be denied the very services and supports
that would make employment possible for them. In short, SSA policies
seem to communicate to beneficiaries that if they attempt to work
and are successful in this effort, somehow they should not have
been eligible for benefits in the first place, thereby creating
a culture of mistrust and suspicion.
Response of Congress and the Social Security Administration
to the Problem
Well aware of the enormity and seeming intractability
of this problem, Congress and SSA have initiated multiple efforts
to promote employment and return to work among SSA beneficiaries.
SSA established the Office of Employment Support Programs (OESP)
in the Office of Disability to coordinate employment and return-to-work
efforts. In recent years, OESP and the Office of Disability have
attempted to implement a number of new initiatives to overcome known
problems. They have attempted to revise the traditional SSA vocational
reimbursement system, in which state vocational rehabilitation agencies
(SVRAs) seemed to have been given a monopoly to provide employment
services to beneficiaries by establishing the alternative provider
(AP) program. The AP program attempted to increase the involvement
of community provider agencies as a competitor to SVRAs in service
delivery for beneficiaries. Unfortunately, participation in the
AP program was quite low and the outcomes it generated were disappointing.
The program has since been subsumed within the Ticket to Work program.
State Vocational Rehabilitation Agencies
SSA has a long history of interaction with SVRAs.
Since 1981, SSA has reimbursed SVRAs for services provided to SSA
beneficiaries that result in specified employment outcomes. The
SSA Vocational Rehabilitation (VR) reimbursement program replaced
an even earlier block grant program and was designed to improve
program outcomes and accountability. Under the VR reimbursement
program, the State Disability Determination Service applied a set
of criteria to individuals awarded SSI or DI benefits. Individuals
who appeared to be possible candidates for rehabilitation were subsequently
referred to the SVRA. SSA beneficiaries selected for referral to
the SVRA were required to participate in the VR program or risk
benefit suspension. The program also allowed beneficiaries to apply
for VR services on their own.
Under the VR reimbursement program, SSA reimbursed
an SVRA for the "reasonable and necessary" costs of providing
rehabilitation services to an eligible beneficiary. In order for
the SVRA to receive reimbursement, the services must have resulted
in the individual obtaining employment and achieving earnings at
or above the SGA level for nine consecutive months. When an SVRA
believed a beneficiary had achieved the earnings criteria, a payment
claim was submitted to SSA. States were reimbursed for the actual
costs of providing direct services, and administrative and tracking
costs were reimbursed based on cost formulas. State agencies were
responsible for submitting evidence to SSA to document that the
individual had obtained employment and had earnings exceeding SGA
for nine consecutive months.
Ticket to Work and Work Incentives Improvement Act
of 1999 (TWWIIA) (P.L. 106-170)
TWWIIA was enacted in 1999 to remove barriers and
disincentives to employment for persons with disabilities while
increasing consumer control over the delivery of employment and
rehabilitation services and supports. The ultimate objective of
this legislation was to provide Americans with disabilities with
more opportunities to engage in employment and achieve increased
financial well-being, while at the same time decreasing their dependence
on public benefits. TWWIIA was intended to (1) increase choice for
Social Security beneficiaries with disabilities in selecting and
obtaining employment and vocational rehabilitation services and
supports; (2) remove disincentives associated with having to choose
between whether to work or maintain health care coverage; (3)
provide a safety net and a mechanism for expedited reinstatement
of benefits; (4) implement safeguards regarding CDRs; and (5) expand
work incentive supports and protection and advocacy services. TWWIIA
provides a number of new program opportunities and work incentives
for both SSI and DI beneficiaries, including the following:
- Ticket to Work and Self-Sufficiency Program
- Expanded availability of health care services
- Expedited reinstatement of benefits
- Postponement of continuing disability reviews
- Benefits Planning, Assistance, and Outreach Program
The Ticket to Work and Self-Sufficiency Program
The Ticket to Work and Self-Sufficiency Program (TTW)
is a voluntary program designed to allow SSI and DI beneficiaries
the opportunity to direct their own employment services and choose
specific services and providers in order to initiate or return to
work. It differs from SSA's traditional vocational rehabilitation
reimbursement program, where referrals of beneficiaries and recipients
with disabilities went to either a state vocational rehabilitation
agency or alternative providers. This program is intended to give
consumers control over the types of services they obtain to support
them in preparing for or maintaining employment, as well as whom
they choose to provide these services and supports.
To implement the TTW program, SSA awarded a Program
Manager contract to MAXIMUS, Inc. to inform beneficiaries about
the program, recruit Employment Networks (ENs), manage Ticket assignments,
resolve disputes among ENs, and manage the payment process. MAXIMUS,
Inc. has devoted extensive resources to recruiting and supporting
ENs. An EN is any qualified entity that has entered into an agreement
with SSA to assume responsibility for the coordination and delivery
of employment services to beneficiaries who assign their Tickets
to that EN. As the TTW program was originally conceptualized, it
was hoped that the TTW program would encourage the participation
of employment and community organizations that have not traditionally
served the SSA population.
State VR agencies must elect to become ENs if they
wish to continue to receive reimbursement from SSA for services
provided to beneficiaries. As an alternative to the traditional
cost reimbursement payment system, VR agencies have the option of
selecting an EN payment structure. ENs may choose to serve Ticket
holders under an outcome payment structure in which the ENs receive
payments for each month the beneficiary receives no cash benefit,
for a period of up to 60 months, or under a milestone payment structure
in which the EN receives periodic payments as the beneficiary achieves
intermediate goals on the way to zero cash benefit.
Expanded Availability of Health Care Services
The majority of Social Security beneficiaries with
significant disabilities will not enter the workforce in full-time
positions with medical benefits and therefore face the loss of health
care when their earnings ultimately result in the elimination of
their cash benefit. Beneficiaries in the past often had to choose
between working at substantial levels and keeping their health insurance
coverage (Clinton, 1999). The Medicaid buy-in provision of TWWIIA
allows states to establish programs in which individuals with disabilities
who work purchase Medicaid services, just as if they were purchasing
health care benefits through an employer-sponsored program. The
buy-in includes several enhancements to the current Medicaid and
Medicare programs and removes some of the disincentives that existed
in the past with returning to work.
The Medicaid buy-in was first established in the Balanced
Budget Act of 1997 (BBA). Through BBA provisions, states could provide
Medicaid coverage to working individuals with disabilities who,
because of their earnings, could not qualify for Medicaid. The concept
of a Medicaid buy-in is to provide a choice for SSI and DI recipients
to work and continue to be eligible for long-term supports and services.
In states that chose the Medicaid buy-in option, individuals in
other Medicaid eligibility categories could choose to move to this
new eligibility category if they were working (Scales, Folkemer,
and Jensen, 2000).
The Medicaid buy-in option authorized under the BBA
was modified and expanded by TWWIIA. Beginning October 2000, states
could cover working individuals between the ages of 16 and 65 who,
except for earnings, would be eligible to receive SSI benefits on
the basis of disability. Unlike limitations under the BBA, TWWIIA
does not limit eligibility to people whose incomes are below 250
percent of poverty (Scales, Folkemer, and Jensen, 2000).
Enhanced Work Incentives
TWWIIA also created new work incentives to promote
employment opportunities for beneficiaries. Two of the most important
are expedited reinstatement of benefits and postponement of Continuing
Disability Reviews (CDRs). Expedited reinstatement of benefits is
designed to address a major disincentive experienced by many SSI
and DI beneficiaries who return to work, have their cash benefits
cease, and then, because of their disability, have to stop work
at a later point in time. Under the expedited reinstatement of benefits
provision, if a person's Social Security benefits have ended because
of earnings from work and he or she becomes unable to work due to
disability, he or she may request reinstatement of benefits, including
Medicare and Medicaid, if applicable, without filing a new application.
In this case, beneficiaries must be unable to work because of their
medical condition.
An additional disincentive for SSI and DI beneficiaries
is the likelihood that work will trigger CDRs, which are conducted
periodically to determine if an individual's medical condition has
improved sufficiently to terminate disability benefits. Under TWWIIA,
SSA cannot initiate CDRs while the beneficiaries are using the Ticket.
However, the cash benefits of DI beneficiaries may be subject to
termination if their earnings are above SGA. As of January 1, 2002,
DI beneficiaries who have been receiving benefits for at least 24
months have not been asked to go through a disability review because
of the work they are doing. However, regularly scheduled medical
reviews set by the Disability Determination Service could still
be performed and benefits could be terminated if earnings are above
SGA (SSA, 2000).
SSA's Work Incentives Support Plan
SSA has developed several programs designed to enable
beneficiaries to make informed choices about work. One program,
the area work incentive coordinators (AWIC), created a new position
internal to the agency. The other two programs, Protection and Advocacy
for Beneficiaries of Social Security (PABSS) and Benefits Planning,
Assistance, and Outreach (BPAO), provide services through agencies
and organizations outside the agency. The purpose of these combined
programs is to provide work incentive planning and assistance to
SSA beneficiaries, conduct outreach efforts to beneficiaries who
may be eligible for various SSA programs, and provide advocacy services
for individuals participating in SSA programs. Each of these programs
is briefly described below.
Benefits Planning, Assistance, and
Outreach Program. In response to the underutilization of
available work incentives, TWWIIA established a community-based
work incentives planning and assistance program designed to disseminate
accurate information about work incentives to Social Security beneficiaries
while providing them with more choices. SSA has established a program
of cooperative agreements and contracts to provide benefits planning
and assistance to all Social Security disability beneficiaries,
including information about the availability of protection and advocacy
services. BPAO increases opportunities for beneficiaries to receive
the information and services they need to become employed and possibly
attain self-sufficiency.
TWWIIA directed SSA to establish community-based planning,
assistance, and outreach programs designed to provide accurate information
and assistance on benefit programs and work incentives to SSA beneficiaries.
To accomplish this goal, SSA established a program of cooperative
agreements with BPAO entities across the United States. The BPAOs
provide information and support in the following areas (Brooke,
2002):
- Information and referral - provide basic information in response
to inquiries about all federal and state benefit programs, and/or
referral to government agencies and other community resources.
- Problem solving and advocacy - solve specific federal and state
benefit and work incentive issues. This may involve advocating
on behalf of beneficiaries with other agencies.
- Benefits analysis and advisement - provide assessment of real
or potential effects of employment or similar changes that will
impact beneficiaries' overall financial well-being, and inform
them of various options available and the projected outcome of
each.
- Benefits support planning - provide direct assistance in the
construction of a plan to promote effective monitoring and management
of beneficiaries' benefit programs and work incentives.
- Benefits management - provide benefit monitoring and management
assistance to recipients who are likely to experience employment,
benefits, or other changes that will affect their benefit status,
health care, or overall financial well-being.
Approximately half of all individuals served by BPAOs
are DI beneficiaries, approximately one-third are SSI beneficiaries,
and the remainder are concurrent beneficiaries. Over 85 percent
of those individuals were either employed or seeking employment.
Approximately 20 percent of individuals receiving services from
BPAOs express an interest in assigning their Tickets to an EN (Virginia
Commonwealth University, 2005).
SSA Area Work Incentive Coordinators.
SSA initially created the position of employment support representative
(ESR) to provide an internal source of knowledge and support for
field office personnel regarding work incentives and SSA employment-related
activities. After implementing a pilot ESR program, SSA concluded
that a better approach to delivering this function would be through
the creation of a new full-time position, the area work incentive
coordinator (AWIC). A key difference between the ESR and the AWIC
is that the ESRs dedicated 100 percent of their time to work incentive
and employment activities. The AWIC is under the supervision of
the SSA area director and may be assigned other duties in addition
to work-related responsibilities. AWICs coordinate with BPAO benefits
specialists, work incentives liaisons (WIL), and other personnel
to provide improved services and information on SSA's employment
support programs to beneficiaries who want to begin or maintain
employment. The responsibilities of AWICs include coordinating local
public outreach efforts on work incentives, overseeing training
for personnel at local Social Security offices on SSA's employment
support programs, handling sensitive or high-profile disability
work-issue cases when appropriate, and monitoring local disability
work-issue workloads (SSA, 2004c).
PABSS. The Protection and
Advocacy for Beneficiaries of Social Security (PABSS) program is
administered by SSA through direct grants to each state-designated
protection and advocacy agency. These grants are made for two specific
purposes: (1) to provide information and advice about obtaining
VR and employment services, and (2) to provide advocacy or other
services that a beneficiary needs to secure or regain gainful employment.
PABSS is a relatively small program designed to complement and supplement
existing protection and advocacy (P&A) programs rather than
to create a large new program structure. The program provides P&A
services to all eligible SSA beneficiaries and makes available dispute
resolution services under TTW. Recent changes have enabled the program
to represent beneficiaries in overpayment cases and other SSA administrative
activities.
Development of Work Incentives
In recent years, Congress and SSA have implemented
a number of work incentives for SSI and DI beneficiaries (SSA, 2000)
to reduce the effect of earned income on benefits, either by allowing
beneficiaries to keep more of their benefits while working or, as
in the case of 1619(b), by permitting a beneficiary to retain Medicaid
coverage despite earnings that preclude cash benefits. However,
few beneficiaries actually return to work or even attempt to return
to work once disability benefits are awarded. In an effort to encourage
beneficiaries to become employed, the Federal Government and SSA
have made changes in the SSI and DI programs during the past 20
years. These changes, or work incentives, are aimed at reducing
the risks and costs associated with the loss of benefit support
and medical services as a result of returning to work. Some SSI
work incentives are the impairment-related work expenses (IRWE)
exclusion; the student earned-income exclusion (SEIE); the Plan
for Achieving Self-Support (PASS) program; Medicaid While Working
(1619(b)); and expedited reinstatement of benefits. Some DI work
incentives are the trial work period (TWP); the extended period
of eligibility (EPE); and Medicare for Individuals with Disabilities
Who Work. The descriptions of the work incentives described below
are taken directly from SSA's "Redbook" (SSA, 2005).
Special SSI Payments for Individuals
Who Work, Section 1619(a) - Section 1619(a) allows beneficiaries
to receive SSI cash payments even when their earned income (gross
wages and/or net earnings from self-employment) is at the substantial
gainful activity level. This provision eliminates the need for the
trial work period or extended period of eligibility under SSI. To
qualify, a beneficiary must have been eligible for an SSI payment
for at least one month before beginning work at the SGA level, still
be disabled, and meet all other eligibility rules, including the
income and resources tests.
Medicaid While Working, Section
1619(b) - Under 1619(b), Medicaid coverage can continue even
if earnings alone or in combination with other income become too
high for an SSI cash payment. To qualify, a beneficiary must have
been eligible for an SSI cash payment for at least one month, still
be disabled, still meet all other eligibility rules including the
resources test, need Medicaid in order to work, and have gross earned
income that is insufficient to replace SSI, Medicaid, and any publicly
funded attendant care. The "threshold amount" is the measure
that is used to decide whether earnings are high enough to replace
SSI and Medicaid benefits and is based on the amount of earnings
that would cause SSI cash payments to stop in the beneficiary's
state. If gross earnings are higher than the threshold amount for
a specific state, the beneficiary may still be eligible if he or
she has impairment-related work expenses, blind work expenses, a
Plan for Achieving Self-Support (PASS), publicly funded attendant
or personal care, or medical expenses above the state per capita
amount.
Impairment-Related Work Expenses
- Under impairment-related work expenses, SSA deducts the cost of
certain impairment-related items and services that a beneficiary
needs to work from gross earnings when determining countable earnings.
It does not matter if an individual uses these items and services
for nonwork activities.
Trial Work Period - The TWP
allows beneficiaries to test their ability to work for at least
nine months. During the TWP, beneficiaries receive full DI benefits
regardless of how high their earnings might be so long as the work
activity has been reported and the beneficiary continues to have
a disabling impairment. The TWP starts with the first month the
beneficiary is eligible for DI benefits or the month in which he
or she files for benefits, whichever is later. The TWP continues
until the beneficiary accumulates nine months (not necessarily consecutive)
in which he or she performed what is called "services"
within a rolling 60-consecutive-month period. SSA currently considers
work to be services if it results in earnings of more than $590
a month (for the year 2005) or the person works more than 80 self-employed
hours in a month.
Plan for Achieving Self-Support
- Individuals who receive SSI or who could qualify for SSI are eligible
to have a PASS. For example, if an individual has too much income
to be eligible for SSI now, using the income to pay PASS expenses
may make him or her eligible for SSI. In brief, a PASS must:
- Be designed especially for the beneficiary;
- Be in writing;
- Have a specific work goal that the beneficiary is capable of
performing;
- Have a specific time frame for reaching the goal;
- Show what money (other than SSI payments) and other resources
will be used to reach the goal;
- Show how the money and resources will be used to reach the
work goal;
- Show how the money being set aside will be kept identifiable
from other funds;
- Be approved by SSA; and
- Be reviewed periodically to ensure that the plan is actually
helping the person achieve progress.
Extended Period of Eligibility
- If a beneficiary's disability payments are stopped because he
or she worked at the SGA level, the beneficiary may be able to automatically
receive benefits again. No new application or disability determination
is required. (This is a different rule than the expedited reinstatement
provision of TWWIIA.) The earliest benefits
can start again is the month after the end of the grace period.
(The individual is paid for the first month benefits cease due to
SGA and the following two months.) The latest
benefits can start again is the 37th consecutive month after the
end of the trial work period. If earnings change significantly from
month to month, it is possible that benefits could be restarted
during this period. Benefits can start again for any month in the
period described above in which (1) the beneficiary continues to
have a disabling impairment, and (2) the beneficiary's earnings
in that month fall below the SGA level.
A DI beneficiary's EPE begins the month after the
trial work period ends. For 36 consecutive months, a DI beneficiary
in his or her EPE may receive benefits when countable earnings are
below the amount currently designated as SGA.
Despite efforts made by SSA and the Federal Government
that have led to more favorable conditions for returning to work,
most SSI and DI beneficiaries remain on the disability rolls. The
work incentives offered by SSA remain largely underutilized; in
March 2000, of the total number of eligible working beneficiaries,
only 0.3 percent were using PASS, 2.8 percent were using IRWEs,
7.5 percent were receiving 1619(a) cash benefits, and 20.4 percent
were receiving 1619(b) extended Medicare coverage (SSA, 2000). The
major reasons cited for the extreme underutilization of these work
incentives by beneficiaries were (1) few beneficiaries knew that
the work incentives existed, and (2) those who were aware of the
incentives thought they were complex, difficult to understand, and
of limited use when entering low-paying employment (GAO, 1999).
Purpose of the Study
The purpose of this study is to conduct a comprehensive
analysis that (1) examines SSA's current efforts to implement its
SSI and DI disability programs; (2) documents philosophical, programmatic,
and regulatory obstacles that limit the ability of SSA beneficiaries
to return to work; (3) identifies evidence-based practices that
promote the return to work of working-age beneficiaries of the DI
and SSI programs; and (4) recommends the legislative, policy, and
regulatory changes that will be necessary to ensure the successful
adoption and implementation of evidence-based practices. This report
is a compilation of the findings of the study, including recommendations
that warrant consideration by policymakers responsible for Social
Security disability programs.
The following are the four research questions the
study was designed to answer:
- What are the evidence-based practices that promote the return
to work of working-age beneficiaries of the DI and SSI programs?
- What policy changes are needed, given recent trends in program
participation and employment?
- Are there proven and documented practices that work best for
some populations of people with disabilities and not others?
- Which factors ensure that documented and evidence-based practices
could be adapted/adopted by SSA and other entities that seek to
ensure the employment of people with disabilities? Which factors
prevent adaptation/adoption?
Research Methodology
Appendix A details the research methodology used and
the four-step approach taken to implement the study. First, a comprehensive
literature synthesis was completed to identify all information of
relevance to the proposed study. Second, detailed structured interviews
were conducted with key stakeholders, including federal SSA officials,
representatives of other federal agencies, consumer and advocacy
organizations, service organizations, community service providers,
and business representatives. Third, a preliminary list of findings,
evidence-based practices, and recommendations based on the literature
review and structured interviews was used to develop seven topic
papers. These papers were used to facilitate discussion and obtain
reaction from participants who were invited to a consensus-building
conference at the end of January 2005. Individuals with disabilities,
advocacy organizations, service providers, and policymakers who
attended the conference had the opportunity to further develop the
proposed recommendations that appear throughout the report.
Content of the Report
After the Introduction (Chapter I), the content of
the report is organized according to the major trends that emerged
from the Consensus Validation Conference:
- The Mission and Purpose of the SSA Disability Benefit Programs
- Chapter II
- Beneficiary Perspective and Self-Direction - Chapter III
- Income Issues and Incentives - Chapter IV
- Coordination and Collaboration Among Systems - Chapter V
These four chapters are organized using a similar
format. After a brief introduction, each chapter identifies the
issues and problems that study participants considered to be the
greatest barriers for beneficiaries who are employed or who want
to be employed. Previous attempts by Congress and SSA to address
these concerns are discussed, both those that have had an impact
in the past 15 years and those that have not been successful. Each
of the chapters ends with proposed recommendations for consideration
by policymakers for changes in the Social Security disability system
and in the system of federal, state, and local programs with which
SSA collaborates in serving SSI and DI beneficiaries.
Although this study makes no attempt to suggest what
a new Social Security definition of disability should be, it identifies
in detail the myriad problems created by the current definition
used to determine eligibility for disability cash benefits and supports.
In Chapter II, a brief explanation is provided of how the disability
definition evolved. The policy premises underlying the current SSA
disability programs are discussed in the context of recent advances
in health care and rehabilitation services, changes in the national
economy, and the demographics of the SSA disability population.
Chapter III focuses on the need for work to pay financially
and personally for employed beneficiaries who have found that current
work incentives do not go far enough to move them beyond poverty
or from a near-poverty level of existence. Problems identified include
beneficiaries having to define their disabilities in the most negative
terms possible to be eligible for benefits, customer service at
the local SSA level that needs improvement, problems resulting from
overpayments made to working beneficiaries, and health care concerns.
The chapter discusses the impact of the Ticket to Work and Work
Incentives Improvement Act (TWWIIA), including the Ticket to Work
(TTW) and BPAO programs.
Chapter IV identifies a number of disincentives to
employment in the current benefit programs, especially the "cash
cliff" created by the limitation placed on substantial gainful
activity, and the restrictions on asset accumulation in the SSI
program. Numerous recommendations are made in this chapter, including
post-eligibility elimination of the concept of SGA, expansion of
the BPAO program, decreasing the restrictions on assets for SSI
beneficiaries, eliminating the waiting period for Medicare benefits
for DI beneficiaries, and eliminating marriage penalties.
SSA interfaces with numerous service systems also
concerned with the employment and support of individuals with disabilities
at the federal, state, and local levels. Chapter V focuses on collaborative
interactions with the health care, rehabilitation, employment and
training, and education systems, as well as with the business community.
In the past 15 years, SSA has been actively engaged in attempting
to improve coordination and collaboration with other federal agencies.
Yet there continue to be policies among the agencies that work at
cross-purposes in promoting employment outcomes for individuals
with disabilities. Chapter V includes recommendations for uncoupling
Medicare and Medicaid coverage from SSI and DI cash benefit payments.
Alternatives to the current systems of health care coverage for
beneficiaries are discussed. Also recommended for consideration
are changes that would make the Ticket to Work program more functional
by promoting collaboration as opposed to competition between state
VR agencies and ENs. Additional recommendations attempt to make
current TWWIIA programs and provisions more compatible with the
One-Stop Career Center system of Department of Labor and more widely
used by transitioning youth served by the Department of Education.
The final chapter of the report, Chapter VI, is a compilation of
the findings, including recommendations that warrant consideration
by policymakers responsible for Social Security disability programs.
Chapter II: The
Mission and Purpose of the SSA Disability Benefit Programs
Introduction
The concept of social insurance is by no means new.
Modern social insurance originated in Germany in the late 1800s.
These early programs were financed by compulsory contributions and
covered all employees, both skilled and unskilled, young and elderly,
male and female, and regardless of the state of their health. The
hallmark of the early "Bismarck" model was the provision
of statutorily fixed entitlements for individuals in employment.
These entitlements were calculated in relation to the contributions
paid. Because the contributions were mandatory, the worker who met
the qualifying conditions was said to have an earned the right to
a benefit.
The purpose of this chapter is to provide a brief
background on the Social Security disability programs and to describe
the fundamental limitations of the programs that relate to eligibility
and the ability of the agency to provide return-to-work services
and supports to beneficiaries. Also discussed are SSA's current
efforts to promote return to work within the current definition
of eligibility and policy framework, and a foundation is provided
for subsequent chapters describing a comprehensive set of recommendations
that will improve return-to-work services and promote employment
and economic self-sufficiency among beneficiaries.
Purpose of the Disability Benefit Programs
The major U.S. disability benefit programs trace their
history to the Eisenhower Administration of the 1950s. In 1956,
after years of public debate, the Social Security Act was amended
to add the Social Security Disability Insurance (DI) program. In
essence, the DI program began as an early retirement program for
older workers whose disabling conditions prevented them from working
until pension age. A strict test of disability was ensured through
requirements for severity of the condition and a prognosis of prolonged
or terminal outcomes. The 1956 definition of disability is still
in use today, in both the DI and Supplemental Security Income (SSI)
programs. The strict and rigidly applied definition remains unchanged.
The term "disability" means--
(A) inability to engage in any substantial gainful
activity by reason of any medically determinable physical or mental
impairment which can be expected to result in death or which has
lasted or can be expected to last for a continuous period of not
less than 12 months (Social Security Act Amendments, 1956).
The very fact that, under the U.S. system, the decision
about granting a disability benefit is made prior to, and without
any consideration of, referral to rehabilitation reveals the underlying
policy premise that severe disability equates to early and permanent
retirement from the workforce. Yet, from Social Security's beginnings,
there were discussions not only of paying disability benefits but
also of providing or requiring rehabilitation prior to the award
of cash benefits. Berkowitz (2000) points out that some early designers
of our disability programs recommended that Trust Fund money be
used to provide rehabilitation services but not cash benefits to
insured people who became disabled. The notion that rehabilitation
should take precedence over paying benefits was echoed by Roswell
Perkins, the Assistant Secretary of Health, Education, and Welfare
in the Eisenhower Administration, who said, "The first line
of attack on disability should be rehabilitation, in order that
people be restored to useful and productive lives" (Berkowitz,
2000, p. 3).
In contrast to the underlying policy premise of the
DI program -- income replacement insurance for workers who retire
early due to injury or illness -- the SSI program is based on a
welfare model. The SSI program was created in 1972 as means-tested
cash assistance programs for elderly individuals and people with
disabilities who have not worked or who are not expected to work.
As such, it was intended to serve as a safety net for individuals
who had not acquired the work history necessary to receive assistance
under the DI program (Daly and Burkhauser, 2003). While the eligibility
criteria have changed somewhat throughout the 30 years of the program,
the goals of the program have remained the same.
A Rigorous Test of Eligibility for SSA Disability Benefits
The eligibility criteria for both the DI and SSI programs
have always been very rigid. Applicants for both DI and SSI must
demonstrate the presence of a severe cognitive or physical impairment.
In addition to the presence of a significant impairment, applicants
must show that they are not able to perform substantial gainful
activity (SGA), currently set at $830 per month, which equates to
annualized earnings of $9,960. Thus, only individuals with the most
severe disabilities, who are in serious economic need, are able
to receive benefits through the program.
Because SSI is a means-tested program, applicants
face additional criteria related to current countable assets, which
cannot exceed $2,000 for single, nonblind beneficiaries. While SGA
has been indexed to the national wage since 2001, the asset limit
for these SSI beneficiaries has remained unchanged since 1989 (Kijakazi,
2000). An SSI beneficiary's eligibility or benefit amount can also
be affected by any other unearned income received, including other
federal and state benefits programs, as well as the income of an
individual's spouse or other family members. As a result, the SSI
beneficiary population is substantially more economically destitute
than it was at the program's inception during the Nixon Administration.
Not only do DI and SSI beneficiaries have to demonstrate
acute economic hardship at the point of application, the benefits
themselves are very low. For DI beneficiaries, benefit amounts in
no way fully replace an individual's lost wages. For "high-earnings"
beneficiaries, the wage replacement rate may be approximately 25
percent of prior earnings, compared with 56 percent for "low-earnings"
beneficiaries (SSA Office of the Actuary, 2004). For SSI beneficiaries,
the current maximum federal payment for an individual before state
supplements is $579 per month, or about 73 percent of the federal
poverty level for an individual. Given the level of current SSI
benefits, a total reliance on these benefits for income support
will not enable most individuals to be economically self-sufficient.
The Changing Societal View of Work Disability
When Social Security Disability Insurance was conceived
in the 1950s, it was designed to serve individuals age 50 and over
who had no expectation of returning to work. The original definition
envisions a program structure that divides those who have work potential,
and are therefore ineligible, and those who have no work potential
and are eligible. A list of very specific medical conditions was
established; if the claimant fit into one of these and was not working,
disability was determined. If the claimant did not fit into one
of these categories, a more individualized assessment was conducted
to determine whether the condition prevented the individual from
performing the kinds of work that might be available, given the
claimant's age, education, training, and experience.
Over the next half-century, changes in the economy,
medicine, and rehabilitative technology have complicated the issue
of work incapacity, making it difficult to draw a line between those
who can and cannot work. In addition, there have been changes to
the legal definition of disability itself to include those under
age 50 and replace "long-continued and indefinite duration"
with a 12-month minimum. Although the core definition remains unchanged,
the context in which it is applied operates very differently.
SSA's current disability programs remain grounded
in the "medical model" of disability, in which disability
is viewed as biological condition resulting from a cognitive or
physical impairment that leaves an individual unable to work. This
model does not reflect the new disability paradigm that recognizes
the role that the social and physical environments play in the life
experiences of people with disabilities (Silverstein, 2000). In
a recent study, the GAO summarized its research on the federal disability
programs over the past several years and reached the following conclusion:
GAO's work on federal disability programs, including
DI, has found that these programs are neither well aligned with
21st Century realities nor are they positioned to provide meaningful
and timely support for Americans with disabilities. Our work suggests
that these programs remain grounded in outmoded concepts of disability,
and are not updated to reflect scientific, medical, technological,
and labor market improvements (GAO, 2005, p. 14).
Rehabilitation and return to work are not recognized
objectives of the Social Security disability programs (Social Security
Advisory Board, 2003). SSA's return-to-work efforts have had limited
results to date, in large part because they have been implemented
in a policy and regulatory environment that is over a half-century
old.
The Problem
Policy Premises Underlying the Definition of Disability
Our nation's current disability benefit programs are
based on a policy principle that assumes that the presence of a
significant disability and lack of substantial earnings equates
to an inability to work. Applicants are required to demonstrate
a permanent incapacity to work in order to obtain SSI or DI cash
benefits. The all-or-nothing nature of the disability programs creates
enormous challenges for SSA as it attempts to design and deliver
return-to-work services and promote employment among beneficiaries.
SSA and its collaborating agencies are attempting to provide rehabilitation
and return-to work services and supports to beneficiaries who have
already been determined to be permanently unable to work (in the
case of DI) or who are not expected to obtain employment in the
foreseeable future (in the case of SSI).
Policymakers, researchers, and advocates have consistently
identified numerous problems with the current definition of disability
used in the SSI and DI programs (Barnhart, 2003; Wittenburg and
Loprest, 2004; Wunderlich, Rice, and Amado, 2002). Four key problems
associated with the current definition of disability are identified
below:
- The current definition of disability hampers SSA's return-to-work
efforts because applicants are required to demonstrate a complete,
permanent inability to work in order to qualify for benefits.
- The current definition fails to recognize the concept of partial
disability.
- The current definition does not take into account that, for
many consumers, disability is often a dynamic condition.
- The length of the application process in current Social Security
disability programs and the waiting periods in the DI program
actually contribute to the ineffectiveness of return-to-work efforts
and the inability to intervene early in the disability process.
In the remainder of this section, each of these problems
is described in detail. Where appropriate, the experiences of other
countries and other U.S. disability management programs are discussed
to highlight the impact of the current definition of disability
on the efforts of individuals with disabilities to obtain employment
or return to work.
Delinking the Concept of Disability from Work Incapacity
In order to be eligible for SSA cash benefits, an
individual must prove that, as a result of a disability, he or she
is permanently incapable of performing any job in the nation's economy
deemed appropriate for the applicant's age, education, and work
experience. Yet it is abundantly clear that millions of individuals
with disabilities, many of whom would otherwise meet the SSA definition
of disability, are working in full- and part-time employment situations
and pursuing rewarding careers.
The current eligibility criteria ignore the incredible
advances in medicine and technology that enable many individuals
with severe disabilities to lead independent and economically self-sufficient
lives. The criteria do not acknowledge the progress made through
improved educational services and the development of evidence-based
employment strategies such as supported employment. Perhaps more
important, the definition has little relevance within our current
public policy framework for individuals with disabilities (Silverstein,
2004), which is based on a presumption that individuals with disabilities
are able to work and have a right to the accommodations and supports
that will enable them to lead independent lives.
The current definition also falls short by failing
to acknowledge that individuals with disabilities who attempt to
enter and maintain employment may frequently encounter extra costs
that would generally not be faced by other workers. For example,
the costs associated with acquiring and maintaining adaptive equipment,
assistive technology, specialized software, vehicle modifications,
and other accommodations may prohibit the individual from obtaining
the supports necessary to enter employment. Other individuals may
incur ongoing costs such as personal assistance services, specialized
transportation fees, or necessary medications. A disability benefit
policy that is based on a concept of total incapacity to work denies
too many individuals the services and supports they need to escape
the disability rolls and become self-sufficient.
Finally, the current programs too frequently set eligibility
for disability benefits as a precondition for other federal and
state programs that can provide the housing, transportation, child
care, or personal assistance services and supports necessary to
maintain employment and economic independence. Many people with
severe disabilities who might otherwise qualify for SSI or DI can
and do work full time and do not receive any disability benefits.
However, as a consequence of working, these individuals may be unable
to access any additional help or support to offset the costs of
their disability.
A number of other countries have developed policies
and programs that acknowledge that having a disability often leads
to additional long-term costs on the part of the individual and
his or her family. In contrast to programs designed to replace lost
wages (like the DI program), these programs attempt to compensate
the individual for the additional costs associated with disability.
For example, the United Kingdom's (UK's) disabled person's tax credit
(DPTC) is designed to neutralize the costs of having a disability
by decoupling the need for help with additional costs from being
in actual receipt of disability benefits. To qualify, individuals
must have less than £16,000 in savings (about $32,000), so
the credit is not geared toward only low-income workers, as is the
U.S. earned income tax credit (EITC). The amount of the DPTC depends
on the number of hours worked and the severity of the disability,
so it applies to individuals working either full or part time. Under
the program, individuals with disabilities who work do not have
to wait until the end of the tax year to file for retroactive payment
or to have it taken off their taxable income, as in the case of
the U.S. system. Instead, employers in the UK pay these funds as
a supplement to wages right in the workers' paychecks, so that they
augment their earnings as they are working.
Policymakers and advocates agree that the all-or-nothing
policy premise in the Social Security disability program eligibility
requirements creates significant challenges for SSA's return-to-work
efforts. Congress and SSA have been unable to overcome the contradictions
inherent in designing and providing return-to-work services to beneficiaries
who have already been determined to be permanently unable to work
within the existing policy framework. For DI beneficiaries, the
lack of a gradual reduction in benefits as a beneficiary's earnings
increase makes employment a highly risky choice for many individuals.
For SSI beneficiaries, the inability to accumulate assets over time
makes movement toward economic self-sufficiency extremely difficult.
As a result, SSA has continuously struggled with the dichotomy of
spending scarce resources to provide return-to-work services within
a policy framework established to provide supports to individuals
who are permanently removed from the workforce or unlikely to obtain
employment in the future.
Recognizing the Concept of Partial Disability
The current definition of disability fails to recognize
the concept of partial disability or temporary disability. For example,
many people with severe disabilities may not be able to work full
time but are willing and able to work part time if that were an
option under which they could maintain entitlement to some benefits.
The highly inflexible system harms individuals with disabilities
in two ways.
First, some individuals who may be capable of working
20 hours per week, but whose condition prevents them from sustaining
full-time employment, may find that they are ineligible for SSA
benefits. These individuals may be denied benefits based on the
fact that they earn wages above the SGA threshold (yet do not earn
enough to be economically self-sufficient), or their prior work
activity makes it more difficult for them to prove their permanent
inability to perform any job in the economy. These individuals may
face the choice of continuing to work at low levels but remaining
ineligible for benefits, or stopping work altogether to gain access
to needed benefits.
Second, individuals with disabilities with no prior
work history, but who may be able to work part time with appropriate
supports, are denied these supports because they are not eligible
for SSA benefits. For example, for some individuals with disabilities,
eligibility for SSI benefits will lead to eligibility for Medicaid,
which will enable them to access personal assistance services and
other employment supports. These individuals may feel that they
have no choice but to apply for disability benefits since, in the
absence of those benefits, they are unable to maintain employment.
However, once determined eligible for benefits, these individuals
may be afraid to attempt to work, since an unsuccessful work attempt
may threaten the cash benefits they already receive.
Other federal benefit programs recognize the concept
of partial disability, but the design of these programs tends to
funnel out individuals who might benefit from partial disability
payments in the all-or-nothing Social Security program. For example,
in the current system, workers' compensation, private insurance
companies, and the Veterans Administration (VA) provide some type
of partial benefit program to individuals that meet a definition
of permanent disability. However, in the workers' compensation and
private insurance systems, applicants who qualify are required to
apply for the SSA program, thereby funneling individuals from systems
that provide partial benefits out to the larger DI program, where
partial benefits are unavailable.
Recognizing the Dynamic Nature of Disability
The current definition of disability does not take
into account that for many consumers, disability is a dynamic condition.
For example, many individuals on the DI rolls who experience psychiatric
disabilities, multiple sclerosis, rheumatoid arthritis, lupus, and
many other conditions describe their disabilities as episodic in
nature. At certain times, they are fully able to obtain and maintain
employment. However, at other times their conditions require them
to disengage from the workforce. The eligibility criteria used by
the Social Security disability programs do not allow for easy transitions
on and off benefits and thus create incentives for these individuals
to remain permanently unemployed once they have become reliant on
the programs.
Available data indicate that there is significant
variation in the work activity of existing DI and SSI beneficiaries.
In an analysis of SSA data, the Government Accountability Office
(GAO) found that nearly half of all DI beneficiaries earning from
75 percent to 100 percent of SGA in 1985 experienced significant
reductions in earnings in subsequent years (GAO, 2002c). Similarly,
recent data indicate that only half of all SSI beneficiaries who
report earnings in a given year report earnings in each of the subsequent
three years (Balkus and Wilschke, 2003/2004).
Other countries have developed disability benefit
programs that are based on a more dynamic concept of disability.
Wittenburg and Loprest (2004) studied disability benefit programs
in four European countries and found that eligibility and reassessment
processes in these countries tend to more closely resemble a continuum,
with the individual moving through a series of stages, in contrast
to the all-or-nothing eligibility criteria of the Social Security
programs. In the European countries examined, eligibility rules
change continuously as the individual moves from a temporary sickness
or temporary disability program to a permanent disability program.
Additionally, individuals may move from one type of program to another
based on their vocational needs. Individuals who benefit from rehabilitation
may move into a less permanent status, or individuals who are not
benefiting from rehabilitation services may move seamlessly into
a more permanent disability status.
Providing Early Intervention Services
The length of the application process in the SSI and
DI programs can contribute to the ineffectiveness of return-to-work
efforts. In both programs, applicants must spend months or even
years documenting their inability to work, which makes it unlikely
that they will seek to obtain employment immediately after being
determined eligible. For DI beneficiaries, the problem is compounded
by the fact that there are lengthy waiting periods for both cash
benefits and Medicare benefits. Thus, DI beneficiaries are denied
the services and supports necessary to promote return to work at
the very time they would likely benefit most from those services.
Social Security may be viewed as the nation's largest
insurance carrier. Like all well-administered indemnity programs,
SSA needs to maintain an active oversight of who gets on the rolls
and how long they stay there. It is a basic rule of the insurance
industry that successful companies must "manage cases against
the risk," meaning that they provide services that will reduce
exposure to claims and unnecessary costs. As a government-administered
indemnity program, it is no longer enough for SSA to simply pay
the medical bills and distribute benefit checks. To reduce future
costs, SSA must devise ways to identify potential disability applicants
and apply early intervention strategies that return people to work
before they apply or divert them back to employment immediately
after they make application.
Large and small companies in the United States understand
the importance of providing services and supports to individuals
with disabilities immediately after the onset of disability. The
process of effectively dealing with employees who become disabled
is referred to as "disability management." Disability
management means using services, people, and materials to (1) minimize
the impact and cost of disability to the employer and the employee,
and (2) encourage return to work of an employee with disabilities
in a cost-effective manner. There is growing evidence that the earlier
the employer intervenes through disability management services,
the faster the ill or injured worker will return to work. In fact,
there is some evidence suggesting that the longer ill or injured
employees stay out on disability leave, the less likely they are
to ever return to work (Habeck and Hunt, 1999; Williams and Westmoreland,
2002).
Reducing the DI rolls by implementing a coordinated
array of prevention, early intervention, and diversion strategies
will require SSA to make a major paradigm shift and totally redefine
both its mission and how it conducts its work on a day-to-day basis.
In order to be successful in these endeavors, SSA must work in an
aggressive and proactive manner to indemnify against future risk,
as opposed to simply passively processing applications submitted
by former workers with severe disabilities and then managing their
ongoing payments. The possibilities presented by prevention, early
intervention, and diversion techniques are encouraging. However,
the ultimate success of these efforts may be limited by the problems
discussed above related to the programs' eligibility criteria.
Attempts by SSA to Impact Its Definition of Disability
Through Modified Program Rules
The SSA concept of disability was developed a half-century
ago and has not changed in spite of the enormous changes in the
national economy and in societal views of individuals with disabilities.
SSA has long recognized the contradictions and outdated policy premises
that form the basis of the current programs and has taken measures
to promote employment among beneficiaries. The efforts, however,
have focused on those who are already on the programs and thus have
met the initial strict eligibility criteria. Over the past two decades,
the agency has slowly modified program rules to encourage work attempts
and operated a program in collaboration with the Rehabilitation
Services Administration (RSA) to offer rehabilitation services to
individuals after they have been determined eligible for SSI or
DI. With the passage of the Ticket to Work and Work Incentive Improvement
Act (TWWIIA) in 1999, SSA expanded its return-to-work efforts to
include the creation of the Ticket to Work and Self-Sufficiency
Program, as well as several other new programs designed to expand
access to public health insurance and employment supports. In the
words of Social Security Deputy Commissioner Martin Gerry, "We
are trying to change the idea that there is something inconsistent
between benefits and work" (Gerry, 2005). The new reform paradigm
within SSA is reflected in a series of innovative demonstration
efforts that SSA is operating or planning to initiate to test the
effectiveness of delivering services and supports earlier in the
process and eliminating additional disincentives in current programs.
These demonstrations include the following:
SSDI Benefit Offset Demonstration
Project - TWWIIA requires SSA to conduct an evaluation that
tests the effect of allowing DI beneficiaries to work without the
fear of losing all benefits by reducing monthly benefits by $1 for
every $2 of earnings above an established threshold. In September
2004, SSA awarded a contract to Abt Associates to design a national
demonstration. SSA is also in the process of developing individual
state demonstrations in four states (Connecticut, Utah, Vermont,
and Wisconsin).
Mental Health Treatment Study
- The Mental Health Treatment Study demonstration will test the
extent to which eliminating programmatic work disincentives, establishing
an accurate diagnosis, and delivering appropriate mental health
and employment supports will lead to better employment outcomes
and other benefits. This demonstration is targeted to Title II beneficiaries
with a primary impairment of schizophrenia or affective disorder.
Temporary Allowance Demonstration
Program - The Temporary Allowance Demonstration Program is
designed to provide temporary cash and medical benefits to individuals
who are likely to benefit from aggressive and immediate medical
care. The program will target applicants who are likely to meet
the Social Security definition of disability and are likely to experience
medical improvement in the near future. This demonstration is in
the early planning stages.
Youth Transition Demonstration
- The Youth Transition Demonstration projects are designed to test
the impact of a comprehensive package of services and SSI waivers
on the postsecondary educational and employment outcomes of SSI
beneficiaries between the ages of 14 and 25. The demonstration projects
are designing and implementing interventions that include services
and supports such as benefits advisement, cash and counseling approaches,
service coordination, disability program navigators, enhanced individual
development accounts (IDAs), and job placement and training services.
The demonstration initiatives described above illustrate
SSA's attempts to improve its return-to-work efforts by redefining
the policy premises underlying the program. SSA is slowly coming
to view the design and delivery of return-to-work services as a
major part of its mission. Efforts to test a gradual reduction in
DI benefits to offset earnings increases reflect a recognition of
the dynamic nature of disability; that is, that a beneficiary's
ability to sustain employment above SGA will vary considerably over
time and will be affected by medical, social, and economic factors.
The Temporary Allowance and Mental Health Treatment Study demonstrations
recognize the importance of providing rehabilitation and medical
services and supports to beneficiaries before the individual becomes
permanently detached from the workforce. Finally, the Youth Transition
demonstration acknowledges that many adolescents and young adults
with severe disabilities who previously have been viewed as incapable
of employment can pursue self-chosen careers and become economically
self-sufficient when provided with the proper services and supports.
The Urgent Need for Policy and Program Changes
Although SSA has taken steps to improve its return-to-work
services, a more comprehensive change in the agency's process and
underlying philosophy is necessary in order to make SSA disability
programs more work-oriented. SSA needs to integrate return-to-work
strategies into all relevant phases of its disability determination
process and benefits systems to enable workers with disabilities
who can return to work to do so. To accomplish this task, the agency
must address the contradictions inherent in the current definition
of disability, the existing eligibility process, and many current
program regulations.
The disincentives to employment that face SSA beneficiaries
take many forms: fear of a loss of benefits due to an unsuccessful
work attempt; low expectations resulting from the current disability
determination process requiring a beneficiary to prove an inability
to work; lack of access to health insurance; the coupling of benefit
payments and health insurance eligibility; inability to access necessary
rehabilitation services and supports; and the sheer complexity of
SSA rules and regulations themselves. Beneficiaries often face seemingly
insurmountable challenges as they attempt to obtain and sustain
employment. In the next three chapters, a comprehensive review of
SSA's return-to-work efforts is presented in three areas -- beneficiary
perspectives and self-direction, income issues and incentives, and
coordination and collaboration with multiple federal and state systems.
In the area of beneficiary perspectives and self-direction,
many of the problems reported by beneficiaries in their daily interactions
with SSA are described. These problems include the lack of responsive
customer service, inability to obtain accurate and complete information
on the effects of employment on benefit level and health care coverage,
the devastating effects of overpayments that often occur when a
beneficiary attempts to go to work, and the disincentives to marriage
in the current program regulations.
The income issues and incentives chapter presents
a detailed description of the disincentives caused by SSA's efforts
to promote employment opportunities within a system designed for
individuals who are permanently retired from the workforce or individuals
who are viewed as unable or unlikely to work in the future. Emphasis
is placed on the need to eliminate the existing "cash cliff"
in the DI program by creating a gradual reduction in benefits as
earnings increase, as well as continued attachment to the DI and
Medicare programs for DI beneficiaries who maintain employment for
extended periods. The chapter also focuses on disincentives in the
SSI program that prevent beneficiaries from building the assets
necessary for long-term economic self-sufficiency, as well as the
complexity of the DI and SSI program rules that make self-directed
financial planning extremely difficult for many, if not most, beneficiaries.
In the chapter addressing coordination and collaboration
with multiple federal and state systems, we address SSA's current
efforts to work collaboratively with public and private health care
providers, the federal-state rehabilitation system, the federal
employment and training system, the educational system, employers,
the business community, and the private insurance industry. The
resulting recommendations are based on the premise that the scope
and complexity of reforms required to significantly increase employment
opportunities for SSA beneficiaries will require concerted efforts
by partner agencies providing the rehabilitation, educational, and
health care supports required for long-term employment success.
Chapter III: Beneficiary Perspective and Self-Direction
Elizabeth and Salvador were married in February
of 2005. Prior to the marriage, Elizabeth received SSI benefits
of $579, and Salvador received both a Social Security check of
$500 and an SSI benefit of $99. Before the wedding, the combined
income they had to live on was $1,178 per month. After the marriage,
there was an immediate impact on the SSI payments. Instead of
two SSI beneficiaries, they became an eligible couple. Their combined
income dropped to $889 per month, a loss of $289 per month from
their budget.
Elizabeth and Salvador's change in marital status
had an immediate impact on SSI payments, resource limits, and
excluded income. It also created disincentives to work. As individuals,
Elizabeth and Salvador could earn more and retain entitlement
to SSI cash benefits. Since she had no other income, Elizabeth
could earn up to $1,243 before losing SSI cash benefits. Salvador,
because he had other income, could have earned $263. Combined,
as single individuals they could earn up to $1,506 before losing
SSI payments. But as an eligible couple, Salvador and Elizabeth
would lose all SSI cash payments if they earned $843.
In April, Elizabeth was offered a job making $12.50
per hour for 20 hours a week, or $250 a week (which is a little
over $1,000/month). Because Salvador already had $500 of unearned
income, Elizabeth could earn only $843 in a month before Salvador
lost Medicaid coverage under the 1619(b) provision of the Social
Security Act. Salvador has very high medical needs, and losing
Medicaid would be devastating. Elizabeth was, therefore, unable
to take the job.
Salvador and Elizabeth are not alone. Many SSI-eligible
couple beneficiaries who could start or increase work would risk
their spouse's Medicaid coverage by doing so. If these individuals
were not married, or if married SSI beneficiaries were treated
the same as unmarried SSI beneficiaries, there would be no loss
of health care benefits.
Introduction
A great amount of time and resources have been spent
on the policy debate concerning various ways to reduce the amount
of tax dollars currently dedicated to the payment of medical and
financial supports for individuals with severe disabilities. Unfortunately,
the voice of beneficiaries, the most essential members of the movement
toward systemic improvements, is frequently lost in the whirlwind
of political arguments for legislative and regulatory change. Without
a strong emphasis on how policy choices affect individual beneficiaries,
the hope for effective change is slim.
Individuals with disabilities apply to SSA or other
benefit providers because they are in dire need of financial support
or other essential benefits, such as health insurance. Often, the
refusal or removal of these benefits leads to instant and severe
hardship. The web of benefits necessary for full support, such as
housing, Medicaid, SSI, Social Security Disability Insurance (DI),
Food Stamps, Energy Assistance, and other local supports is often
so complex that it is nearly impossible for any one person to understand
it all. The current network of benefits compounds rather than alleviates
feelings of powerlessness. If beneficiaries are to attempt to obtain
employment or return to work, they must feel secure that their efforts
will be rewarded, financially and personally. Without an increase
in security or confidence in their overall financial status, the
barriers that exist among SSA and SSI beneficiaries and work may
seem insurmountable.
This chapter describes some of SSA's current attempts
to improve customer service and public information about work incentives
from the perspective of beneficiaries. First, a number of obstacles
to return to work and weaknesses in the current program are identified.
Second, recent efforts by SSA to address these weaknesses are analyzed.
Also discussed are some health care options available to beneficiaries
in the current economy. Finally, the chapter makes recommendations
for change that will encourage beneficiaries to reduce their dependence
on federal benefits and increase their economic self-sufficiency.
The Problem
There is still a need to go through the window of
swearing to the government that your disability prevents you from
working in order to get the supports you need in order to then
go out and find a job. I just think that is a fundamental flaw
that the Ticket to Work legislation was a small effort at addressing,
but I still think we have big problems in that we make a person
take an oath in order to get supports. It's particularly problematic
for young people. The notion that an 18-year-old would retire
at age 18 and would have to swear to the government that they
can't work in order to get health care and supports to me is bad
policy (Andy Imparato, President, American Association of People
with Disabilities, December 2004).
When the DI program was created in 1956, it was designed
as a financial support for people over 50 years of age who were
forced to permanently leave the workforce prior to retirement age
because of a disability (Social Security Advisory Board, 2003).
Subsequent programs entitled adults disabled in childhood to receive
benefits, and SSI allowed children under age 18 to receive a benefit
because of a disabling condition if the family had low income and
resources. As the programs expanded, they failed to reflect the
huge changes in medical treatment and societal perception of impairment
and employment opportunities that have occurred since program inception
(GAO, 2004a).
In order to receive benefits, an applicant must define
his or her situation in the most negative terms possible -- an inability
to work, both now and in the future. The applicant must document
to the government that he or she is unable to work at any significant
level. This process helps to internalize the message that the individual
is incapable of working. Once the individual has applied for benefits,
disability determination staff affirm that he or she has severe
work incapacity, reinforcing socially prevalent negative messages
about disability and work. If the individual is not approved for
benefits at the initial application level, the person must then
proceed through a series of appeal steps in order to obtain essential
supports. This process can take years and a significant amount of
effort and stress (GAO, 2004a). Once awarded, this hard-fought prize
is even more highly valued, and the individual is initially unlikely
to jeopardize eligibility by attempting to obtain employment or
return to work.
Once determined eligible for disability benefits,
beneficiaries face a host of complex program rules and policies
related to continuing eligibility for cash benefits and access to
health care. Many beneficiaries, confused or uninformed about the
impact of employment on their life situations, have shied away from
opportunities to become self-sufficient through work. Past efforts
of Congress and SSA to encourage beneficiaries to work have included
the addition and expansion of work incentive provisions, as well
as changes to certain program rules recognized as limiting or negatively
impacting beneficiaries. In spite of these efforts, many significant
barriers remain.
Beneficiaries considering the possibility of returning
to work must weigh the benefits of employment against potential
costs. These costs include a reduction in overall monthly income
due to earnings limitations, limits to the availability of health
care and other necessary employment supports, penalties associated
with the development of assets, the probability of significant overpayments
of benefits, and difficulties associated with understanding and
managing benefit and employment impacts over time. Major improvements
to the current Social Security disability programs, such as those
recommended below, are needed immediately if there is to be an increase
in the number of beneficiaries leaving the rolls as a result of
work. Without such improvements, it is unlikely that significant
numbers of beneficiaries will assume the risks and losses inherent
in an effort to return to work.
Customer Service
For a number of years, SSA has been reducing staffing
levels in its local offices (Consortium of Citizens with Disabilities,
2000). At the same time, the number of individuals applying for
and receiving benefits has steadily increased. The result is an
overworked SSA workforce that must deal with an overwhelming and
growing workload. Insufficient staffing has often led to long lines
and poor service. The processing of appeals and back-to-work issues
is not performed in a timely manner. Misinformation is frequent,
and mistrust is common.
Beneficiaries often report that SSA needs to improve
customer service. Frequently reported problems include offices and
meeting spaces that are too noisy for individuals with hearing loss,
lack of information in accessible formats for individuals with vision
loss, and misunderstandings about how work incentives might relate
to specific impairments. Long waits for service in field offices
are common, as is the frequent loss of essential paperwork sent
to SSA. In some field offices, it is not uncommon for the main telephone
numbers to be busy for extremely long periods of time. Trying to
access specific staff members is often quite difficult, and it is
frequently reported that staff do not return messages left by beneficiaries
or their advocates in a timely manner.
Health Care Concerns
Medicaid and Medicare health insurance coverage is
often essential to beneficiaries. A significant percentage of beneficiaries
live near or below the poverty level (SSA, 2004e). All have disabling
conditions, many of which require expensive treatments for an extended
period of time. Without access to necessary health care, both morbidity
and mortality will increase. In fact, in a recent study, beneficiaries
listed loss of health insurance as the largest barrier to return
to work (MacDonald-Wilson, Rogers, Ellison, and Lyass, 2003).
Even though individuals generally receive health insurance
after becoming entitled to cash benefits under Social Security disability
or SSI, the coverage may not completely meet the beneficiary's needs.
This is especially true of Medicare, which has not provided full
comprehensive coverage since its inception in 1965. Part A (Hospital
Insurance) and Part B (Supplemental Medical Insurance) require deductibles,
co-payments, monthly premiums, and, for many, some other form of
supplemental health coverage. Medicare managed care plans through
health maintenance organizations, called Medicare Advantage Plans,
are available to offer somewhat more comprehensive coverage, but
they have widely differing access rules and availability at state
and county levels.
As described in Chapter I, many states have opted
to offer Medicaid buy-in programs that provide Medicaid coverage
to working individuals with disabilities. Eligibility tests for
these programs vary widely from state to state. While the Medicaid
buy-in provides a new opportunity for beneficiaries to engage in
work activity, eligible individuals sometimes encounter problems
with the program, such as the unavailability of providers accepting
Medicaid. Also, not all buy-in programs provide the same pharmaceutical
benefits. For example, some limit the number of prescriptions an
eligible beneficiary can receive (Goodman and Livermore, 2004).
Relying on only one source of health coverage has
proved to be inadequate for many beneficiaries. Both Medicare and
Medicaid have restrictions and eligibility requirements that may
create challenges for beneficiaries. Medicaid recipients may not
receive some optional benefits, may face restrictive income and
asset requirements (Sheldon, n.d.a), or may encounter limited physician
choice. Beneficiaries must complete a 24-month qualifying period
to receive Medicare. Also, until the Medicare Modernization Act
Medicare (MMA) Part D becomes effective in January 2006, Medicare
beneficiaries must pay for prescription medications entirely out-of-pocket.
Once MMA prescription coverage has begun, beneficiaries will still
have a significant out-of-pocket share for prescriptions.
Deficiencies in the Wage Reporting System Resulting
in Overpayments
The reduction and/or loss of SSI and DI benefits as
a result of work and earnings can serve as a disincentive to employment
for beneficiaries. The inherent work disincentive in the benefit
programs is further exacerbated by the likelihood of substantial
benefit overpayments that occur as an unintended consequence of
work. SSA relies heavily on beneficiaries to report work activity
and other changes in circumstances that impact benefit eligibility
and payment amount. If work activity is not reported in a timely
manner by beneficiaries, overpayment of benefits is generally a
result. However, as many beneficiaries and advocates have discovered,
in spite of appropriate wage reporting by individuals, the failure
of SSA to act on reported earnings information in a timely manner
and adjust benefits accordingly likewise results in substantial
overpayments for many beneficiaries.
According to SSA, earned income is the most common
reason for overpayments in the SSI and DI programs (SSA, 2002).
Based on data from an SSA study, the GAO recently reported that
overpayments attributable to work and earnings averaged about 31
percent of all DI overpayments annually between 1999 and 2002. Overall,
total DI overpayment detections increased from about $772 million
in FY 1999 to about $990 million in FY 2003 (GAO, 2004b). Newly
detected SSI overpayments were nearly $2 billion, or 6 percent of
total outlays in 2001 (SSA, 2003). The extent of overpayments in
the disability programs not only compromises the integrity of the
programs but also serves to undermine the resolve of beneficiaries
to increase their work efforts and reduce reliance on benefit supports.
Beneficiaries considering work must weigh the potential of having
to repay a large benefit overpayment as an additional cost of employment.
Numerous factors have been identified as impeding
the ability of SSA to make accurate benefit payments, resulting
in overpayments to beneficiaries. These factors include the complexity
of the disability program rules, insufficient access to timely and
current earnings data, as well as complexities and inefficiencies
in the current DI work activity CDR process (GAO, 2002a, b; GAO,
2004b; Livermore, 2003).
Complexity of Program Rules
Determining accurate monthly payment amounts in the
SSI program involves matching an individual's need with his or her
financial situation for a given month. As changes are experienced
in earnings level, adjustments must be made to ensure accurate benefit
payments. Projected monthly earnings amounts provided by SSI beneficiaries
are used by SSA to determine monthly benefit amounts for the following
12-month period. Overpayments result when projections of earnings
are incorrect or changes in earnings are not reported or acted upon.
Additionally, the rules governing how earnings and other income
are counted and how exclusions are applied are complex and create
confusion among beneficiaries regarding reporting requirements.
For example, a working SSI recipient may have his or her benefits
recalculated, resulting in eligibility for DI benefits. This results
in separate letters to the beneficiary: one letter states that the
SSI recipient has been overpaid (paid too much SSI) during certain
months that he or she was entitled to DI; a separate letter from
DI states that he or she had been underpaid DI during the months
he or she was owed DI. This is called the "windfall offset"
provision, because the overpayment for SSI is taken out of the person's
first DI checks.
Discrepancies in the treatment of income between the
SSI and DI programs likewise contribute to confusion and difficulties
in the reporting of income and subsequent benefit adjustments. For
SSI purposes, benefit eligibility in a given month is based on earnings
received in that month, and usually the amount of benefit is based
on earnings or other income received two months before the payment
month. For the DI programs, benefits are based on wages earned in
a month. While SSI cash benefits are adjusted when beneficiaries
reach $65 in monthly gross earnings, a DI cash benefit is not impacted
until the beneficiary engages in SGA-level work following completion
of the trial work period. In addition, the array of work incentives
available in each program and their impact on countable income determinations
vary significantly. Disparities in program rules are particularly
problematic for concurrent beneficiaries who must understand and
negotiate both programs as well as the interface between the two
programs to avoid substantial overpayments.
Insufficient Access to Timely and Accurate Earnings
Data
Access to timely and accurate earnings information
is essential if overpayment of benefits is to be avoided. This is
particularly true for the SSI program, which pays monthly benefits
based on the actual amount of income received by a beneficiary.
Individual circumstances and earnings may change often, requiring
SSA to continuously reassess and adjust payment amounts. Reliance
on beneficiary reports of income is problematic given the complexity
of income definitions and rules and the challenges it poses for
beneficiaries who are attempting to understand the impact of even
minor changes in their earnings on their eligibility and benefit
amount.
Complex and Time-Consuming Nature
of DI Work Activity CDR Processing - Work activity continuing
disability reviews (CDRs) are performed in the DI program to determine
if a beneficiary is engaging in substantial work following the trial
work period. The work activity CDR process is complex and time-consuming,
involving the development of information related to a beneficiary's
work effort, verification of earnings level achieved and monthly
wages earned, and the assessment of work effort against the SGA
guideline, including the development and application of any subsidies
and work incentives relative to the SGA determination.
The inability of SSA to effectively manage the work
activity CDR caseload and make SGA determinations and benefit adjustments
in a timely manner has resulted in overpayment of benefits for many
DI beneficiaries. Factors identified as contributing to this problem
are well documented and include insufficient management information
to support internal caseload monitoring; the lack of screening mechanisms
to identify DI beneficiaries at risk of large overpayments; inadequate
automation of the complex process; and staffing constraints related
to expertise, competing caseloads, and duplication of effort between
field offices and program service centers (GAO, 2004b; Livermore,
2003).
Marriage Penalty
There are several provisions in the Social Security
Act that terminate or reduce benefits because a beneficiary marries.
This section will be restricted, however, to discussing the combined
disincentives to marry and work created by the eligible couple provisions
of the SSI program.
SSI beneficiaries often live significantly below the
poverty level and may slide further into poverty by marriage. Spousal
income is deemed to be available to the SSI beneficiary, often causing
loss of essential income and health care supports upon marriage
to an individual who does not receive SSI. If an SSI-entitled individual
marries someone else who is eligible for SSI, there is a status
change that lowers the potential SSI benefit to both individuals,
increases the reduction in available income caused by work, and
significantly increases the risk to health care created by working.
Eligible couple status is assigned to SSI beneficiaries
who live together and are married or "holding out" to
the community as if they are married. The SSI program treats an
eligible couple as one SSI unit. The highest possible federal benefit
payment for the eligible couple unit is reduced by one-third from
the total combined benefit for two unmarried individuals.
When two SSI recipients become an eligible couple,
not only is their maximum combined SSI benefit reduced, but the
impact of other income against the potential SSI payment is increased.
Each single SSI individual beneficiary receives an exclusion of
$20 for all types of income and an additional exclusion of $65 of
earned income when SSA determines benefit payments. A couple, however,
receives only one $20 and one $65 exclusion. The result is that
work has a greater negative impact on SSI benefits received by eligible
couples. This creates a disincentive to marry for SSI beneficiaries,
a disincentive that is exacerbated by work activity because of potential
loss of health care.
Most states offer Medicaid entitlement automatically
to SSI beneficiaries. Extended Medicaid for people who work, authorized
under Section 1619(b) of the Social Security Act, allows SSI beneficiaries
to retain Medicaid entitlement even though they have too much income
to receive an SSI cash payment. For Section 1619(b) to apply, the
person must meet all other eligibility criteria, such as disability
status and resources under the allowable limit. The person may retain
Medicaid only if it is the individual's own earned income that causes
the loss of entitlement to cash payments. Because SSI is the payer
of last resort for basic needs, any income, including the earnings
of a spouse, impacts receipt of SSI. If two SSI beneficiaries are
married, the income of either member of the couple is counted against
the possible benefit of both. What is earned income to the working
member of the couple is treated as unearned income to the spouse.
Since the 1619(b) provisions require that the SSI beneficiary meet
all SSI eligibility criteria except income attributable to earnings,
only the working spouse retains Medicaid.
Fortunately, if both husband and wife work, they may
both retain Medicaid under Section 1619(b). It often happens, however,
that one member of a couple is ready or willing to try work, but
the other member of the couple is medically unstable, unable to
find work, or otherwise not working. The result is that the member
of the couple who could work might be unable to work to his or her
full potential without risking essential medical services for the
spouse. How much the working member of the couple could earn would
depend on other income. If there were no other income, for example,
the working member of the couple could earn slightly less than $1,823
per month in 2005 before the nonworking spouse would lose Medicaid.
If the couple had high unearned income, the amount the working member
of the couple could earn would be very low.
Previous Attempts by Congress and SSA to Improve Customer
Service and Beneficiary Control
Congress and SSA have implemented many legislative
changes, program modifications, training initiatives and automation
efforts in the past 15 years. Many of these have resulted in improved
customer service but have not had a direct impact on beneficiary
sense of control to date. Some examples of these modifications include
testing of quarterly online wage verification in SSA's Chicago Region;
implementation of the Office of Hearings and Appeals' (OHA) Case
Processing and Management System (CPMS) to facilitate tracking of
appeal files; streamlining disability claims processing (GAO, 2004a;
GAO, 2004c); and the Social Security Protection Act, which clarified
income and asset definitions to streamline the adjudication of SSI
applications (SSA, 2004d). Although any effort to streamline processing
and improve customer service should be lauded, the volume and level
of detail necessary to discuss all the hundreds of programmatic
changes at length would be overwhelming. In order to limit the list
to a manageable volume, the following discussion outlines the initiatives
that are clearly directed toward the improvement of beneficiary
understanding and choice.
The Ticket to Work and Work Incentives Improvement
Act
As described in Chapter I, many components of the
Ticket to Work and Work Incentive Improvement Act (TWWIIA) were
designed to improve work incentives for individuals with disabilities.
Expedited reinstatement of benefits, for example, made it easier
for individuals who lost entitlement to SSI or Social Security benefits
due to work activity to return to benefit status if work was stopped
due to the same or a related disability. The increase in the extended
period of Medicare coverage permitted individuals who lost entitlement
to Social Security disability benefits due to work to retain Medicare
for at least an additional 54 months beyond the period specified
in earlier legislation. The rules for Medicaid buy-in programs were
liberalized to allow individuals with higher income to be eligible,
should states choose to adopt the higher limits. The two changes
in the Act that are most relevant to beneficiary control, however,
were the Ticket to Work (TTW) itself and the provisions requiring
SSA to improve the information available to beneficiaries on the
effect of employment on their continuing eligibility for financial
and health care benefits.
The Ticket - The purpose
of the TTW program is to provide eligible beneficiaries with greater
choice and control of the employment support services they need
to assist them in obtaining employment or returning to work. While
the program remains in its infancy, results to date have fallen
short of expectations. SSA has contracted with Mathematica Policy
Research (MPR) to conduct a comprehensive evaluation of the TTW
program. MPR released its initial evaluation report in February
2004 (Thornton et al., 2004), with subsequent reports to be released
annually through 2007. The initial MPR report documented a number
of key findings.
- Beneficiary participation is low.
As of August 2003, less than 1 percent of Ticket holders had assigned
their Ticket to an Employment Network (EN). (While the participation
rate has risen slightly since 2003, overall participation remains
extremely low.)
- Most Ticket assignments have been to state
vocational rehabilitation agencies (SVRAs). Since the launch
of the TTW program in February 2002, the overwhelming majority
(over 85 percent) of Ticket assignments have been made to SVRAs.
- EN recruitment and retention is difficult.
Recruiting and retaining ENs has been a significant challenge
for the TTW program.
- EN Ticket assignments are concentrated among
a few providers. Over half of all ENs have not accepted
any Tickets, although they have not disenrolled from the program.
Over 80 percent of all ENs have accepted five or fewer Tickets.
- EN financial viability is still uncertain.
Results of MPR interviews with ENs indicate that virtually all
ENs report that they are losing money on their TTW operations.
This finding is corroborated through EN testimony to the Work
Incentive Advisory Panel (WIAP) and the U.S. Congress (Webb, 2004).
- Providers complain about TTW marketing.
Many ENs feel that SSA has done an insufficient job in terms of
marketing the program to beneficiaries.
TWWIIA identified four target groups that were anticipated
to have a difficult time receiving services under the TTW program:
those who (1) need ongoing support and services, (2) need high-cost
accommodations, (3) earn a subminimum wage, or (4) work and receive
partial cash benefits. While evidence in this area is quite limited,
it appears that individuals in these groups have, to some extent,
been able to assign their Tickets to state VR agencies, but are
often viewed as too costly or risky to be served by ENs that continue
to struggle to maintain financial viability.
SSA has required that state VR agencies serving current
Ticket holders automatically assign the Ticket to the state VR agencies
in most circumstances. In order to receive services from a state
VR agency, consumers must sign a form that outlines steps necessary
to achieving their vocational goals. Once signed by the beneficiary,
this plan, called an individualized plan for employment (IPE), will
be sent to the program manager with a blank assignment form as a
Ticket assignment, even if the individual consumer involved has
not been informed and has not offered consent. This policy appears
to clearly violate the principles of consumer direction and choice
that were the foundation on which the Ticket legislation was built.
SSA's Work Incentives Support Plan
SSA has developed several programs designed to enable
beneficiaries to make informed choices about work. Two programs--area
work incentive coordinators (AWICs) and work incentive liaisons--are
internal to the agency. The other two programs--Protection and Advocacy
for Beneficiaries of Social Security (PABSS) and Benefits Planning,
Assistance, and Outreach (BPAO)--provide services through agencies
and organizations outside the agency. The purpose of these combined
programs is to provide work incentive planning and assistance to
SSA beneficiaries, conduct outreach efforts to beneficiaries who
may be eligible for various SSA programs, and provide advocacy services
for individuals participating in SSA programs. Each of these program
components was described in Chapter 1. Two of the programs, WILs
and BPAOs, are discussed in further detail below.
Work Incentive Liaisons -
An additional group of internal work incentive specialists has been
put into place in each SSA field office. These specialists, called
WILs, serve as a primary contact for beneficiaries, rehabilitation
professionals, and agencies that work with people with disabilities.
WILs have been a valuable source of information regarding the work
incentives. A significant drawback to this effort, however, has
been the limited amount of time and resources that the WILs have
been able to devote to their additional work incentive job assignments,
given their other job duties. Beneficiaries often report that WILs
frequently change, making it difficult to establish a working relationship
with WILs who serve their specific geographic area. Problems reported
less frequently are that many WILs do not understand the work incentives
and that some are not even aware that they are considered WILs.
Benefits Planning, Assistance, and
Outreach - TWWIIA authorizes SSA to operate a national network
of BPAO programs that are intended to provide beneficiaries with
accurate and complete information on the effects of employment or
increased earnings on the status of their cash benefits and health
care coverage. Nationally, 114 BPAO organizations had provided services
to nearly 168,000 beneficiaries as of March 31, 2005 (VCU-BARC,
2005). Many types of organizations are providing BPAO services.
Centers for Independent Living (CILs) are providing services in
52 communities, accounting for nearly half of all BPAO organizations.
Nonprofit community organizations, ranging from Goodwill Industries
to mental health centers, provide services in 21 locations. State
vocational rehabilitation agencies operate BPAO programs in 18 states.
Other BPAO organizations include advocacy organizations (e.g., United
Cerebral Palsy), universities, and legal aid agencies (including
protection and advocacy organizations).
Of the 167,950 beneficiaries served by the BPAO programs
to date, 49.2 percent are DI beneficiaries, 28.4 percent are SSI
beneficiaries, and 15.4 percent are concurrent beneficiaries. Individuals
with psychiatric disabilities (33.6 percent), system diseases (15.2
percent), cognitive disabilities (8.9 percent), and non-spinal-cord
orthopedic disabilities (8.9 percent) account for two-thirds of
all individuals served. More than 90 percent of the individuals
who receive intensive benefit support through the BPAO program are
either employed or in the process of seeking employment. Most are
currently not working but have a desire to change their employment
status. Slightly more than half indicate that they are not employed
but are actively seeking employment, and nearly 30 percent fewer
are currently employed part time, working less than 30 hours a week.
Less than 6 percent of intensive benefit support beneficiaries were
employed full time, working 30 or more hours a week (Virginia Commonwealth
University, 2005).
The impact of the BPAO programs on beneficiaries'
subsequent employment experiences cannot be determined through currently
available data. In 2003, the SSA Office of Quality Assurance conducted
a consumer satisfaction survey of beneficiaries served through BPAO
programs. However, the methodology employed in conducting the survey
does not allow the results to be used to examine program effectiveness.
At the present time, SSA is considering various approaches that
can be used to conduct a rigorous evaluation of the program.
Use of Technology for Outreach and
Adjudication - SSA has made significant improvements in the
use of technology for outreach and adjudication. The SSA Web site
is rich with valuable information and is fully accessible and well
constructed. Though a strong indicator of SSA's commitment to embrace
technology, the effectiveness of this medium is limited because
only a small percentage of individuals with disabilities have readily
available Internet access (National Organization on Disability,
2000). Also, even though they are presented well, the SSA programs
themselves are still complex and confusing.
There have been other internal attempts to improve
accuracy and accountability for the adjudication of work issues.
The Modernized Return to Work system and the Disability Claims Folder
were two such initiatives. Both offered better control of disability
work reports. Personal Computer Continuing Disability Review (PCCDR)
was another initiative developed to assist Social Security claims
representatives in adjudicating work issues in a timely and accurate
way. Recently, these three initiatives were rolled into EWORK, the
software that Social Security field office staff are required to
use when adjudicating work issues. Although consumers themselves
do not access the software, the structure of the software creates
a significant improvement in accountability for work-issue processing.
Instead of a paper trail, SSA now takes work reports electronically.
EWORK immediately sends a note to the field office with adjudicative
responsibility that the beneficiary has reported work. An electronic
file accessible from all agency locations is created, and reminders
are sent to field office staff that the issue is pending. In addition
to the improvement in accountability, the EWORK system should improve
consistency in the adjudication of work reports because EWORK screens
force claims representatives to consider work incentives that may
apply.
The EWORK system was rolled out over the last few
months of 2004. With time, it should improve information exchange
among offices and should improve adjudication of Title II work issues.
Unfortunately, the system is completely separate from the SSI system;
therefore, it is still possible that a beneficiary who receives
both Social Security and SSI disability benefits will need to report
work separately to Social Security and SSI claims representatives.
SSA is in the process of developing software to add to EWORK that
will supplement the report of work, routing it to individuals responsible
for both SSI and Social Security disability adjudication at the
same time.
Recommendations for SSA Policy Change: Beneficiary
Perspective and Self-Direction
I think a system based on work incentives won't
work; instead, there has to be a system where people feel protected
until they are truly comfortable with their ability to sustain
themselves through work. The system has to acknowledge the cyclical
nature of many disabilities and the difficulty most beneficiaries
have regaining any employment if they have previously lost employment….
The reason for work incentives seems to be the draconian results
that occur without them. Create a system less interested in terminating
benefits … and work incentives become much less necessary.
Work incentives are the result of the piecemeal approach that
has been such a damaging part of these programs from the beginning
(James McCarthy, Director of Governmental Affairs, National Federation
of the Blind, November 2005).
The lack of a comprehensive, beneficiary-directed
system of supports creates enormous risks in the lives of already
vulnerable individuals. When an unsuccessful work attempt can have
a significant negative impact on an individual's financial and health
status, it is unrealistic to expect large numbers of beneficiaries
to attempt to leave the benefit rolls. Congressional and regulatory
policymakers must design alternatives that are better at recognizing
the financial risks faced by beneficiaries. To address these concerns,
Congress and SSA must address these concerns through improvements
in the delivery of customer service, modifications to the TTW program,
expansion of SSA's efforts to promote consumer choice, eradication
of overpayments, and the elimination of marriage penalties.
Recommendations Specific to Customer Service
Efforts to improve SSA's customer service will require
a combination of improved architectural and programmatic accessibility,
changes to staffing patterns and work assignments, enhancements
to the role of work incentive liaison, continued improvements to
SSA's automated processing efforts, and increased outreach to SSA
beneficiaries. Specific recommendations are provided below.
SSA should develop and implement
a plan to improve the architectural and programmatic accessibility
of SSA field offices. SSA offices need to be more sensitive
to universal access issues. SSA staff members need to be better
informed, more available, and more sensitive to the concerns and
limitations experienced by beneficiaries who come to Social Security
field offices. An ongoing program on disability awareness should
be provided to all frontline staff. Field office interviewing space
should be designed to provide better access for individuals with
hearing impairments and all disabilities. Using better sound barriers,
for example, would facilitate hearing and improve privacy.
SSA field office personnel functions,
staffing patterns, and work assignments should be redesigned to
prioritize activities that assist beneficiaries attempting to work.
The existing system of "work credits" for field office
employees should be modified so that employees receive credit for
the complex work involved in processing work reports and other post-entitlement
issues. SSA should make the WIL a full-time position in most large
field offices, instead of merely an additional job duty for a staff
member with many other responsibilities. Liaisons should receive
intense, ongoing training to ensure that they provide accurate and
complete information to beneficiaries attempting to use various
work incentives to increase their employment opportunities. In addition,
SSA should significantly increase the number of AWICs in the field.
There are currently 58 AWIC positions, with one housed in each area
office. AWICs conduct public outreach on work incentives; provide,
coordinate, and oversee training on SSA's employment support programs
for all local SSA personnel; handle some highly sensitive disability
work-issue cases; and monitor the disability work-issue workloads
in their assigned areas. Feedback from beneficiaries consistently
indicates that SSA field office staff struggle with correctly implementing
the complex work support rules for beneficiaries with disabilities.
If SSA expanded the number of AWICs, it is reasonable to expect
that more training and oversight could be provided to improve this
situation.
The effort to automate processing
of work reports not only needs to continue but needs to expand to
coordinate work reports in the SSI and Social Security benefit programs.
Information transfer processes should be improved so that an individual
who has reported a change to one employee of SSA can be assured
that the information reaches and remains available to all necessary
offices and staff members. EWORK, SSA's newest work-issue adjudication
software, should improve information processing, but greater efforts
should be made to improve communication and local office accountability
for work-issue processing.
SSA should significantly improve
outreach efforts to beneficiaries to inform them of the existence,
advantages, and reporting requirements of various work incentives.
SSA should work with beneficiaries and advocacy groups to be more
creative in choosing outreach mechanisms by providing materials
in accessible formats and by sending direct mail contacts to individuals
reminding them of work incentives and the need to report changes
and work activity. Efforts should be specifically targeted to better
reach individuals who do not have Internet access.
Recommendations Specific to the Ticket to Work Program
In order for beneficiaries to successfully leave the
benefit rolls, they must be able to gain access to the services
and supports necessary to enable them to obtain and maintain satisfying
employment. The TWWIIA legislation is an effort to provide increased
access to employment services and beneficiary control of their own
careers. To fulfill this purpose, the TTW program needs considerable
modification. Specific recommendations to improve the TTW program
are provided below.
Congress and SSA should expand Ticket
eligibility to include beneficiaries whose conditions are expected
to improve and who have not had at least one "continuing disability
review"; childhood SSI beneficiaries who have attained age
18 but who have not had a redetermination under the adult disability
standard; and beneficiaries who have not attained age 18.
The low participation rates during the initial implementation of
the TTW program make it essential that SSA continue to identify
those individuals on the disability rolls who are most likely to
obtain and maintain employment for extended periods of time. It
is important to note that if Congress were to adopt this recommendation,
there would be additional costs associated with its implementation
and, therefore, by Office of Management and Budget rules there would
be a requirement to provide an offset to pay for the change.
SSA should review and modify the
TTW regulations to ensure that Ticket assignment practices do not
violate the voluntary nature of the program and beneficiary rights
to grant informed consent. One of the major goals of the
TTW program is to offer options for rehabilitation outside the traditional
VR system. However, SSA regulations allow the state VR agency to
automatically assign a beneficiary's Ticket if the person is eligible
for a Ticket at the point that the beneficiary signs his or her
individualized plan for employment (IPE). It is essential that changes
be undertaken in order for the program to succeed in its intended
purpose.
SSA should design and implement
a strong national marketing program that will expand and intensify
its efforts to inform beneficiaries about the TTW and other SSA
programs. The marketing program should allow SSA to inform
beneficiaries about the TTW program at least once each year. The
program should also provide information to beneficiaries on the
other support services available to them in their local communities
that can assist them in the pursuit of their career goals.
Recommendations Specific to Facilitating Beneficiary
Choice
The SSA-funded network of BPAO programs has been highly
successful in providing basic information on SSA program provisions,
work incentives, and employment services and supports available
to beneficiaries attempting to obtain employment. At the same time,
the BPAO program is limited in terms of the types of individuals
that can be served and the types of information that can be provided.
The BPAO program currently lacks the capacity to adequately supply
information to all beneficiaries who need these services. The following
recommendations address these concerns.
The BPAO grant program should be
elevated to an integrated federal grant-making responsibility, combining
resources and oversight from the Centers for Medicare and Medicaid
Services (CMS), Office of Special Education and Rehabilitation Services
(OSERS), Housing and Urban Development (HUD), and the Employment
and Training Administration (ETA). SSA must continue to engage
RSA and its other federal partners in dialogue to encourage them
to jointly fund benefits counseling. Since these agencies all benefit
when individuals have access to accurate and complete information
regarding the effect of employment of benefits and health care,
it makes sense that they participate in the purchase of this service.
SSA should consider changes to the
existing BPAO program to improve the accuracy and quality of services
provided to individual beneficiaries. SSA should immediately
complete a comprehensive evaluation of the BPAO program and implement
program modifications based on the evaluation results. The evaluation
should focus specifically on efforts to promote quality assurance
and avoid conflicts of interest with BPAO provider agencies.
Recommendations Specific to Reducing SSA Overpayments
to Beneficiaries
The problem of SSA overpayments to beneficiaries is
very complex. To address this problem, SSA should focus efforts
on enhancing automated approaches to post-entitlement earnings processing,
centralizing the processing of post-entitlement earnings reporting,
and informing beneficiaries of their work-reporting responsibilities.
Several recommendations are provided below.
SSA should expand its efforts to
increase the use of electronic quarterly earnings data and automated
improvements to expedite the processing of work activity and earnings
that affect eligibility and benefits. In doing so, SSA should
adopt a uniform definition of wages for both programs that bases
the definition on when wages are paid as opposed to when they were
earned. In addition, SSA should simplify the process of estimating
and verifying wages, particularly for the SSI program, in order
to reduce the effort expended by beneficiaries and SSA in wage-accounting
activities.
SSA should pilot the creation of
centralized work Continuing Disability Review (CDR) processing in
cadres similar to PASS and special disability workload cadres.
These units might be staffed with CRs who have undergone training
similar to the training provided to AWICs. This approach would establish
a specific unit as the single repository for earnings information
that could be held accountable for following up and processing the
information requested and received.
Congress should direct SSA to enhance
its efforts to educate beneficiaries on reporting requirements,
the impact of wages on benefits, and available work incentives.
Additional options for reporting income by beneficiaries to SSA
should be tested. Agency resources should be directed toward monitoring
the extent to which SSA district offices are providing receipts
to beneficiaries for reported income. Finally, program rules governing
overpayments should be changed to substantially limit liability
for repayment of benefits in situations where beneficiaries have
reported earned income consistently to SSA as required by law.
Recommendations for Eliminating the Marriage Penalty
SSI beneficiaries should be allowed to make choices
regarding their marital status without regard to the effect of their
actions on their benefits and health care. The following recommendations
address this concern.
Congress and SSA should undertake
a complete review of the SSI program and make program modifications
that eliminate the financial disincentive to marriage inherent in
the present program. The drop in available SSI income places
eligible couples even further below the poverty line than they are
as unmarried individuals. The risk of terminating a spouse's Medicaid
creates a huge disincentive for members of an eligible couple to
work. In addition, continued Medicaid protection should be extended
to both members of an eligible couple when the earnings of either
member causes the loss of SSI.
Congress should amend the current
Title XVI disability legislation to modify the manner in which 1619(b)
eligibility is applied to eligible couples. Given the intent
of the 1619 provision to provide a safety net to beneficiaries in
ensuring continued access to health care, a member of an SSI eligible
couple who is not working should not be penalized with the loss
of Medicaid as a result of his or her spouse's work activity. Access
to continued Medicaid for the nonworking member of the eligible
couple could be provided through 1619(b), based on amended eligibility
criteria, or through the establishment of a separate protected status
group.
Summary
The SSA disability system was originally developed
for individuals who left the workforce with the expectation that
they would never return. However, the rapid pace of medical advances,
improved societal attitudes, and an increased focus on rehabilitation
now allow many beneficiaries who previously would have been permanently
excluded from the workforce to engage in full- or part-time employment.
Congress and SSA must understand that beneficiaries who attempt
to obtain and maintain employment face many challenges and often
view the decision to work as endangering their ability to pay for
their basic needs and maintain access to health care. To assist
these individuals, Congress and SSA must ensure that beneficiaries
receive high-quality customer service and have access to accurate
and complete information that will enable them to make informed
career choices. They must be able to access appropriate and effective
employment services and supports. They must be assured that their
attempts to obtain employment will not lead to large overpayments
that may further jeopardize their economic self-sufficiency or jeopardize
their ability to access health care services. Finally, SSA's disability
program regulations should never create situations in which beneficiaries
are penalized because of their desire to be married.
Chapter IV: Income Issues
and Incentives
Gary is 32 years old and has been receiving SSI
and DI benefits since he was 26, when he applied for and was granted
disability status by SSA. Gary's DI benefits are relatively low
because he had a limited work history before he was granted disability
benefits, so he also qualifies for SSI benefits. Gary has worked
several times since becoming disabled, and he says, "The
last time I went to work I held my job for nearly eight months.
After I stopped working, I got a letter from SSA telling me I
had been overpaid about $700 and underpaid about $250. It was
the most bizarre thing I had ever seen. Some of my friends tell
me I can earn as much as I want for a year without my benefits
being cut, and another friend says I can only earn about $800
a month. This whole thing makes my head want to explode!"
Gary understands that he has two different benefits
and that the rules differ for each one, but he does not want to
owe the government any money. He decided to turn down a small
inheritance from his aunt because it would have made him ineligible
for Medicaid. Instead, he asked his mother to keep the money and
pay for a college course for him. "I want to be rid of Social
Security benefits, but I can't make up what I get in cash and
medical benefits until I get more training. Since I got that notice
about how I owed the government money, I'm afraid to do anything!"
Introduction
Social Security Administration disability benefits
programs (Disability Insurance and Supplemental Security Income)
are characterized by a plethora of complex rules governing how various
forms of income and assets are treated in terms of benefit eligibility
and payment amount. Both disability programs make a significant
distinction between income that is earned (i.e., received in exchange
for work effort or as remuneration for work performed) and unearned
(i.e., all other income that does not meet the definition of earned
income or wages). In addition, the SSI program imposes resource
limits and includes a wide range of regulations that define which
resources count and under what circumstance they count, as well
as numerous citations detailing a host of specific income exclusions.
The manner in which SSA treats these various forms of income and
resources has a significant effect on the behavior of beneficiaries.
The rules may serve to either encourage or reinforce behavior or
to punish or decrease behavior. The manner in which these rules
influence efforts by beneficiaries to attempt employment is the
particular focus of this chapter.
The myriad problems related to the DI and SSI income
and resource rules and their impact on beneficiaries' decisions
about work have been acknowledged repeatedly by beneficiaries, scholars,
advocates, and disability policy specialists for many years. The
following sections will examine several of the most persistent problems
in both the DI and SSI programs in terms of how income and resources
are counted, describe the efforts SSA has made to date to resolve
the problems, and offer specific recommendations for the future.
The Problem
Employment Disincentives in the Disability Benefit
Programs
The single most significant disincentive to employment
in SSA disability programs is the sudden loss of cash benefits as
a result of earnings above the substantial gainful activity (SGA)
level for Title II disability beneficiaries. While disincentives
remain in the SSI program, the way earned income is treated by this
program is, for the most part, quite positive. SSI earned income
rules encourage work by providing increased financial well-being
through employment and continuing Medicaid coverage under the 1619(b)
provisions. It is only in rare circumstances that an SSI recipient
does not come out ahead by working. This is definitely not the case
in the DI program. The primary eligibility criterion for DI benefits
focuses on the verification of a medical condition that will result
in death or has lasted or can be expected to last for at least 12
months, and which results in an "inability to work at a substantial
level." In effect, if the applicant is able to work at a substantial
level (as defined by SSA), the person is not eligible for benefits,
regardless of the person's medical condition. SSA's definition of
"work" in this context is SGA, which is defined as the
value of a person's work expressed as a monthly dollar figure. For
FY 2005, the SGA guideline is set at countable gross earnings of
$830 per month.
Unlike the work incentives offered to SSI recipients,
which allow for a gradual reduction in cash benefits as the recipient's
earnings increase, the DI program operates in an all-or-nothing
fashion. The effect of earned income on DI benefits consists of
a complex set of work incentive "phases," with the end
result being loss of cash payments if and when countable gross earnings
consistently exceed the SGA guideline. During the first work incentive
phase, known as the trial work period (TWP), beneficiaries are permitted
to retain benefits regardless of how much is earned. TWP months
occur whenever gross earnings exceed the current TWP guideline,
which is $590 for FY 2005. The TWP ends when nine months of TWP-level
employment are accumulated within a rolling 60-month period. When
the TWP ends, beneficiaries move into the second phase of work incentives,
known as the extended period of eligibility (EPE). During this 36-consecutive-month
period, beneficiaries retain full benefits until SSA determines
that the person is demonstrating SGA-level work. If this level is
determined while the beneficiary is in the EPE, benefit payments
are due for any month that earnings fall below the SGA guideline.
When a pattern of SGA-level work is demonstrated,
beneficiaries are permitted a third work incentive phase, known
as the grace period. This allows the beneficiary to retain full
benefits for the first month SGA-level work occurred and two following
months for a total of three consecutive months. After the EPE ends,
the beneficiary may be terminated from the DI program if earnings
continue to remain above the SGA guideline. If the grace period
is used up during the EPE and the beneficiary subsequently ceases
employment or earns less than SGA, benefit checks may resume. However,
if the grace period is used up, after the EPE is over, a single
month of SGA-level work may cause termination of benefits. The manner
in which DI benefits cease entirely when earnings reach the SGA
level is often referred to as the "cash cliff."
Studies show that far less than 1 percent of DI beneficiaries
return to work and earn at substantial wages (Gerry, 2005). Many
benefits experts, as well as the U.S. Government Accountability
Office (GAO), have suggested that this cash cliff that creates a
clear disincentive to work for most DI beneficiaries (GAO, 1996a;
Sheldon and Trach, 1998; National Council on Disability, 1997a;
O'Day, 1999). SSA has made an effort to lessen the negative impact
of the cash cliff effect by indexing the SGA level annually (starting
in 2001); allowing exclusions from countable gross earned income,
such as impairment-related work expenses (IRWEs) and subsidies;
and averaging earnings over a period of months and allowing short-term
unsuccessful work attempts (UWAs). However, many beneficiaries continue
to choose not to work for fear of benefit loss, or intentionally
suppress their earnings under the SGA amount in order to retain
their full DI cash benefit and program eligibility (LaPlante, Kennedy,
Kaye, and Wenger, 1996).
It is not at all surprising to discover that beneficiaries
are suppressing earnings in order to retain benefits. The SSA definition
of "substantial work" and the SGA earnings guidelines
are generally too low in relation to benefit payments, creating
a major disincentive to working above the SGA level. Although many
DI applicants and beneficiaries might be able to maintain employment
at or marginally above the SGA level, this level of income is often
NOT sufficient to replace the full DI payment. The average monthly
DI payment in 2004 was $895 (SSA, 2004a), while the SGA guideline
was $810. The combination of average cash payments plus earnings
means that a beneficiary would have to earn, on average, $1,720
per month to replace the income received by working at just below
the SGA level. If the DI beneficiary receives additional cash benefits
for dependent family members (what SSA terms "auxiliary benefits"),
the point at which a beneficiary breaks even when he or she earns
more than SGA is even greater than $1,720 per month. It is very
difficult for individuals to earn enough to replace the amount of
their lost DI cash benefit, even though the SGA amount increases
every year. In addition, the SGA guideline is measured by gross
earnings, not net wages received after taxes, and does not account
for the additional expense and effort incurred by working. Unless
a beneficiary can get a job that pays more than the DI benefits
paid to the family after all deductions and expenses are accounted
for, there is little or no financial incentive to work above SGA.
This effect is even more pronounced for people with
the highest benefit payments and those with the least ability to
earn wages comparable to the DI payment. For a significant number
of DI beneficiaries, a greater financial outcome would be achieved
by working part time below the SGA level while still retaining full
DI benefits and Medicare. Return-to-work strategies attempted by
SSA will only be effective if and when the applicant is convinced
that working will be of greater financial benefit than not working.
Individuals stop participating in the labor force when they decide
that the benefits of working or seeking work no longer outweigh
the costs of doing so. Benefits include wages and health insurance
as well as nonfinancial benefits such as personal satisfaction and
socialization. The costs of working include the effort involved
to perform the job, commuting time, cost of clothes and other work
expenses, and intangible factors such as frustration or conflict
with co-workers and supervisors. A major cost is the value of the
activity forgone while working; that is, whatever benefits the person
would have derived from whatever activity they could have done instead
of working.
In summary, until the DI rules are changed to make
work truly pay, many beneficiaries will continue not to work or
will choose to work part time and earn less than the SGA level.
Complex Rules Govern the Effect of Income on Disability
Benefits
The complexity of the SSA rules creates significant
disincentives to employment for both DI and SSI beneficiaries. First,
the series of work incentive phases inherent in the DI program--including
TWP, EPE, cessation month/grace period, and SGA determinations,
in combination with the methods for reducing countable income through
IWREs and subsidies--is simply too much to expect a beneficiary
to understand or negotiate. The sheer complexity of the work rules
causes beneficiaries to be leery of paid employment. When beneficiaries
cannot readily comprehend nor predict exactly what will happen when
work is attempted, the result is that work is forgone entirely or,
at best, minimized. The perceived risk is simply too great. While
the advent of BPAO services authorized by TWWIIA is a positive step
forward, the fact remains that the DI program is just too complicated.
Second, while the work rules for the SSI program are
relatively simple compared with those for the DI program, the rules
governing unearned income and resources are also incomprehensible
for many beneficiaries, their families, and advocates. When one
examines the rules for concepts such as deeming, in-kind support
and maintenance, countable resources, and the many resource exclusions,
it is clear that the average untrained layperson has little or no
chance of understanding or applying these rules without expert assistance.
Beneficiaries often feel overwhelmed by the application of SSA regulations
that they view as arbitrary and irrational. The more insecure beneficiaries
feel about how their behavior will affect benefit payment amounts
or eligibility, the less likely they are to risk anything that may
cause problems.
It is unfortunate that attempts by SSA to address
the employment disincentives in the DI and SSI programs often add
to the complexity of program rules. Rather than stripping the programs
back to the original core premises and starting over with a simplified
framework, SSA makes incremental changes by adding more exclusions,
incentives, deductions, credits, and waivers. The rules become more
and more intricate and the behaviors we intend to reward occur less
and less often as people become unable to deal with the ever-increasing
complexity and confusion.
It is important to note that one of the primary reasons
for the complexity in current SSA regulations is the regulatory
environment in which SSA currently operates. Major changes to the
existing system proposed by SSA as a way to provide greater incentives
to employment and promote economic self-sufficiency usually incur
costs that must be paid for by offsets. It is important to note
that any change proposed by SSA, such as the elimination of the
24-month Medicare waiting period, is strictly bound by Office of
Management and Budget (OMB) rules that require identified offsets
in other program areas.
Harsh Income and Resource Limits Create Barriers to
Employment
Social Security DI benefits are a form of insurance
funded from the Social Security Trust Fund that beneficiaries (or
their parents) have contributed to through FICA deductions. For
this reason, entitlement for DI benefits is based on becoming an
"insured worker" rather than on a financial means test,
other than countable earnings under the current SGA guideline. DI
beneficiaries may accumulate unlimited assets or resources, and
may supplement their SSA benefit with most forms of unearned income
without suffering any adverse impact on DI eligibility. (There are
some exceptions when the unearned income is a form of public disability
benefit.) For most DI beneficiaries, the ability to save money and
accumulate assets is unimpeded by SSA rules.
In stark contrast, SSI is a federal "welfare"
program financed through general income tax funds. SSI is a means-tested
program with limits on both income and resources. SSI recipients
risk loss of both cash benefits and Medicaid if countable unearned
income exceeds the current federal benefit rate ($579 in FY 2005)
and/or countable resources exceed $2,000. ($3,000 is permitted for
an SSI eligible couple in which two SSI recipients are married to
one another.) Earned income is treated more favorably due to the
1619(a) rules that permit earnings to exceed the SGA limit and the
1619(b) extended Medicaid provisions that permit eligible recipients
to earn up to their state threshold amount (and, under certain circumstances,
up to an individualized threshold amount) before SSI eligibility
and Medicaid are lost. Furthermore, if the income and resource limits
are exceeded for more than 12 consecutive months, the individual
is fully terminated from the SSI program and must complete the initial
application process again in order to reestablish entitlement.
While the resource limits of $2,000 for an eligible
individual and $3,000 for an SSI eligible couple have not increased
since 1989, the SSI program does offer various exclusions to the
income and resource rules that allow for some limited asset accumulation.
For example, SSI excludes one home of any value as long as the SSI
recipient resides in it. In addition, SSI recipients are permitted
to own unlimited property essential for self-support (PESS). This
includes equipment, real property, or cash accounts that are part
of a business for someone who is self-employed. SSI also permits
recipients to own one vehicle, which may be of any value if it is
needed to get to and from medical appointments or a job, or is modified
to accommodate the recipient's disability. It is interesting to
note that SSA only allows one house and one vehicle for an eligible
couple, which SSA defines as two SSI recipients married to each
other. This is one of several marriage penalties built into the
income and resource rules for the SSI program and described in detail
in Chapter II.
In addition, SSI recipients may use a work incentive
known as a Plan for Achieving Self-Support (PASS) to save money
or set aside income in order to pay for things needed to attain
an occupational goal. Funds set aside under an approved PASS do
not count when SSI eligibility determinations are made or when SSA
is determining the SSI benefit amount. Unfortunately, few SSI recipients
are aware of even the most basic income and resource exclusions
described above. Work incentives such as PASS and PESS are long-standing
provisions in Social Security policy, but they remain relatively
unknown and underutilized.
States have the option to supplement cash benefits
to SSI beneficiaries. The option is designed to alleviate poverty
and is frequently applied to accommodate the higher cost of living
particular to a state or locale. When implementing the state supplement
option, states have the right to set their own limits on resources
and are not bound to the SSI limit. For example, although federal
SSI policy allows $2,000 in countable resources, recipients could
be held to a lower resource limit of $1,500 in order to receive
the state SSI supplement.
There are additional income and resource tests that
individuals must meet to maintain eligibility for optional Medicaid
waiver programs, as well as the special extended Medicaid coverage
provided to certain former SSI recipients, and the Medicare savings
programs in which Medicaid pays for Medicare premiums, co-payments,
and deductibles. All of these programs have their own unique rules
governing income and resource limits for eligibility. Furthermore,
some states levy a "share-of-cost" or "patient liability"
for Medicaid recipients in optional categories of coverage whose
countable income is over specified limits. This means that a portion
of the individual's income has to be paid back to the state Medicaid
agency to offset the cost of care provided. Needless to say, understanding
these diverse sets of rules is impossible for most individuals with
disabilities, their families, or agency personnel. In some cases,
individuals simply choose not to rock the boat by working in order
to avoid any chance that essential Medicaid eligibility could be
lost, or patient liability could be charged. This is particularly
frustrating for DI beneficiaries, who are not limited in asset accumulation
by SSA but are penalized by the state Medicaid agency due to participation
in the home and community-based services (HCBS) waiver program or
inclusion in institutional waiver programs for persons with mental
retardation/developmental disabilities. In order to retain the Medicaid-funded
services that may make community participation possible, the individual
must choose to forgo most forms of asset accumulation.
Individual development accounts (IDAs) have been a
recent response to the inadequacy of income support and means-tested
benefit programs to help the poor. IDAs are time-limited matched
savings accounts for eligible low-income workers for the purposes
of saving for a first home, college, or for starting or growing
a business. These programs are currently authorized under the Welfare
Reform Act of 1996 and the Assets for Independence Act (AFIA). While
employment is certainly a critical pathway to self-sufficiency,
Sherraden (1995) argues that people move out of poverty by saving
and investing, not by income generation alone. However, evidence
suggests that people with disabilities are underrepresented in the
population currently aided by IDAs. In addition, the earned income
tax credit frequently complements IDA programs, but these are also
assumed to be relatively underutilized by persons with disabilities.
At the present time, no data systems are available that track variables
such as disability in the use of incentives such as IDAs or the
EITC. SSA has recognized the importance of asset accumulation through
IDAs and currently allows IDAs funded under the Welfare Reform Act
and AFIA to be excluded as countable resources in the SSI program.
In addition, the Youth Transition Demonstration Initiative funded
by SSA includes additional SSI waivers for other IDA programs.
Many New Beneficiaries Who Could Work Delay Employment
Out of Fear of Benefit Loss
As discussed in Chapter III, the definition of disability
contained in the Social Security Act is inextricably linked to the
inability to perform work at the Substantial Gainful Activity level
SGA level. SSA further defines disability in terms of meeting a
"duration requirement." This means that the inability
to engage in SGA-level work has to have already lasted for at least
one year or is expected to last for a continuous period of at least
one year or is expected to result in death (20 CFR 404.1503). Because
of this duration requirement, individuals who return to work at
the SGA level within 12 months of when their disability began may
risk losing entitlement, since they would fail to meet SSA's definition
of disability. As the regulations presently stand, individuals with
disabilities who attempt to work soon after disability onset incur
the greatest risk of being found ineligible for Social Security
disability benefits. This is an unfortunate situation, since individuals
who are recently disabled have the strongest attachment to the workforce
and thus are most likely to be successful in returning to work.
Research in the field of disability management (DM) suggests that
the longer ill or injured employees stay out on disability leave,
the less likely they are to ever return to work (Sun Life Financial,
2001).
There are regulations under both the DI and SSI programs
to protect the benefit eligibility of some individuals who return
to work soon after disability onset. In the DI program, individuals
who have completed the initial five-month waiting period required
before benefit payments may begin and who have received notification
of benefit award are afforded the protection of the trial work period
(TWP). The rules related to meeting the disability duration requirement
and governing the circumstances under which working at SGA soon
after disability onset cause ineligibility are very complex. Because
of this complexity and perceived risk, beneficiaries are fearful
of attempting to work while in application status or for several
years after benefits are awarded. In some cases, this fear persists
indefinitely, since beneficiaries become convinced that any work
effort will be interpreted as improvement in medical condition that
may cause termination. In earlier times, this was actually a legitimate
concern, since evidence of work activity at any level was viewed
by SSA as a potential indication of medical recovery and was used
as a rationale for initiating a full medical review. While TWWIIA
changed the rules so that work activity alone could not be used
as a basis for initiating a medical review, this provision only
applies to DI beneficiaries who have been entitled for at least
two years. Once again, these rules discourage beneficiaries from
trying to reenter the workforce soon after becoming disabled or
immediately after becoming entitled to benefits. Policies of this
type, which serve to delay work attempts, are counterproductive,
since extended absence from the workforce creates a separation from
the habit of work, entrenches a "disability mindset,"
and allows preexisting work skills to deteriorate or become obsolete.
Delays in Accessing Health Insurance and Risk of Losing
Health Insurance Once Obtained
DI beneficiaries who are newly eligible for benefits
are not entitled to Medicare until they have completed a 24-month
qualifying period. If those individuals receive DI or disabled widow(er)s
benefits, they must serve an additional five-month waiting period
before the qualifying period begins. This means that a total of
29 months must pass from the initial eligibility for DI benefits
until Medicare coverage may begin. In contrast, individuals who
are determined eligible for SSI must be eligible for benefits for
only one month in order to qualify for Medicaid in most states.
In the 11 states that adopted slightly more stringent rules for
Medicaid than the SSI income and asset rules (known as 209(b) states),
most SSI beneficiaries need only apply to county Medicaid agencies
to receive health coverage as soon as SSI entitlement is established.
States that exercise the 209(b) option are Connecticut, Hawaii,
Illinois, Indiana, Minnesota, Missouri, New Hampshire, North Dakota,
Ohio, Oklahoma, and Virginia. Having necessary medical supports
in place permits beneficiaries to manage their disabilities more
effectively, making it easier to contemplate a return to work. Having
to wait for those supports, as under the DI program, further separates
beneficiaries from the workforce.
Previous Attempts by Congress and SSA to Impact Income
Issues and Incentives
SSA is aware that its own internal rules and regulations
governing the treatment of income and resources act as a barrier
to employment for DI/SSI beneficiaries. Over the past decade, several
attempts have been made to change the rules to encourage paid employment.
These efforts are delineated below.
Efforts to Lessen the Impact of the SGA "Cash
Cliff"
During the past 15 years, SSA has taken several steps
to diminish the disincentives surrounding SGA determinations. In
1990, SSA implemented a change in program rules that increased the
level of gross earnings that constitute SGA from $300 to $500 a
month. This change resulted in limited improvement in the system,
given that the $200 increase accounted solely for growth in wages
since 1980, when the SGA level had last been adjusted. A second
proposed rule change in 1990, which was not implemented, was a plan
to index the SGA level to average wage growth in future years. The
failure to implement such an index was particularly damaging in
view of the subsequent increase in the federal minimum wage level.
Subsequent program rule changes resulted in a further increase of
the SGA guideline to $700 in July 1999; finally, in January 2001,
a major regulatory change provided for an annual adjustment of the
SGA guideline to reflect wage growth. While the increases in the
SGA guideline are positive, they have not corrected the fundamental
problem. As discussed at length previously, it is still of greater
financial benefit for many DI beneficiaries to retain full DI payments
and hold earnings under the SGA guideline. Until SSA is able to
correct this defect in the system, relatively few beneficiaries
will choose to work at a level that would cause termination. As
long as beneficiaries who perform SGA and lose cash benefits are
worse off financially than those who do not work or those who earn
less than SGA, little progress will be made.
Another reason beneficiaries choose not to engage
in employment above the SGA level is a prevailing belief that DI
benefits will not be available again if they are needed at a later
date. TWWIIA created a new work incentive called expedited reinstatement
(EXR) of benefits to make it easier for former beneficiaries who
were terminated from the DI/SSI program due to excess earned income
to come back into the disability program without having to fully
reapply. This provision was enacted in 2001 and was designed to
alleviate the fear of sudden and permanent detachment from the DI
program. It is clear, however, that beneficiaries continue to worry
about losing their connection to the program, and this fear continues
to have an effect on work activity.
TWWIIA also requires the Commissioner of SSA to implement
research demonstrations using various models for sliding scale benefit
offsets designed to ameliorate the disincentives posed by the DI
cash cliff. While the regulations governing the $1 for $2 offset
demonstration have been published, the cash benefit offset pilots
have not begun as of this report (Federal Register, April 14, 2005).
The Ticket to Work and Work Incentives Advisory Panel (2002) has
supported and recommended the implementation of $1 for $2 benefit
offset pilot projects and has provided extensive recommendations
for the conduct of such demonstrations.
Efforts to Allow Increased Asset Development
PASS and PESS are important, long-established work
incentives that allow SSI beneficiaries to accumulate income and/or
resources without risking loss of benefits while working toward
a future occupational goal or maintaining self-employment and small
business ownership. However, PASS and PESS are relatively unfamiliar
to SSA personnel and service provider agency staff, as well as beneficiaries.
In order for these programs to have any widespread or lasting impact,
SSA needs to embark on a major public awareness, outreach, education,
and technical assistance campaign. In addition, these programs preclude
savings for non-employment-related purposes and are perceived as
being complex and bureaucratic in nature.
SSA has also been increasingly interested in the use
of individual development accounts (IDAs) as a method for helping
beneficiaries accumulate assets while retaining eligibility for
SSI and Medicaid. IDAs are temporary matched savings accounts designed
to assist low-income workers in buying a first home, starting or
growing a business, or attending postsecondary education (Sherraden,
1995). To qualify for the program, individuals must meet one or
more of the following eligibility definitions:
- Eligible for Temporary Assistance for Needy Families (TANF);
- Eligibility for earned income tax credit (EITC); or
- Earnings at or below 200 percent of poverty.
IDA program features include regular minimum deposits
from earnings in IDA savings accounts later matched with IDA match
funds for a temporary period of time. For example, for every dollar
of earned income saved, a participant may receive the equivalent
of $2 in matching IDA funds at the time of an asset purchase (e.g.,
tuition payment, down payment on a home, inventory for a business).
AFIA and local programs set minimum deposit standards and maximum
match thresholds (e.g., $25 per month and matching contributions
not to exceed $2,000 per person). Other program features include
regular financial education, asset-based training, and other components
that are unique to local programs. In March 2003, SSA incorporated
several changes to the treatment of assets in SSI: (1) disregarding
retroactive payments of DI and SSI benefits; (2) earned income tax
credits; and (3) child tax credits for a period of nine months following
the month the payment was received (SSA POMS SSI 00830.670). Furthermore,
personal savings from income that are deposited in AFIA-funded IDA
accounts are excluded from SSI resource tests and are excluded from
countable income in SSI definitions, which may mean (a) the maintenance
of SSI benefits, (b) qualification for cash benefits among former
1619 eligibles, or (c) increasing cash payments while building temporary
savings for later reduced dependency on SSI. In 2001, SSA incorporated
the provision of IDAs consistent with the AFIA in the Balanced Budget
Act and Workforce Investment Act. This provision excludes savings
and matching funds in AFIA-eligible accounts from resource tests
in SSI, TANF, Food Stamps, and Medicaid (Sweeney, 2004; Corporation
for Enterprise Development, 2004).
Despite these changes, the number of people with disabilities
who are accessing the programs is unknown. While it is suspected
that people with disabilities are accessing IDA programs, EITCs,
and child tax credits, few hard statistics are available. Demonstration
projects sponsored by SSA and the National Institute on Disability
Rehabilitation and Research (NIDRR) are in the formative stages
of advancing the application of IDAs among youth and adults with
disabilities, including the incorporation of benefits planning and
work-incentives counseling. Anecdotal evidence suggests that the
current infrastructure is inadequate to meet the needs of persons
with disabilities and community-based programs. For example, nonprofit
community development corporations are largely unfamiliar with accommodation
needs, universal design concepts, and the availability of resources
within the community-based service systems and VR. Furthermore,
IDA matching funds, as well as operating resources, are inadequate
and are only in the exploratory, conceptual stages for the integration
of skill sets and resource leveraging necessary to augment services.
Recommendations for SSA Policy Changes: Income Issues
and Incentives
The following sections highlight recommendations for
change that, if implemented, would remove barriers to employment
currently caused by the treatment of income and resources in the
DI and SSI programs.
Recommendations for Easing the SGA Cash Cliff for DI
Beneficiaries
Congress should modify the current
Title II disability legislation to eliminate SGA as a post-entitlement
consideration for continued eligibility for Title II disability
benefits. Under the current DI rules, substantial gainful
activity continues to be a primary factor not only in establishing
initial eligibility but also in maintaining eligibility after benefits
are awarded. The policy premise that SGA defines "inability
to work" has a detrimental impact on a beneficiary's motivation
to go to work and conveys a mixed message about employment and continuing
entitlement to SSA benefits. In a system in which disability takes
on a meaning other than inability to work, SGA should be abandoned
as a primary standard for continued benefit eligibility once initial
eligibility for the DI program has been established. It is recommended
that the current system be changed to allow DI beneficiaries who
work to retain their beneficiary status and access to benefits in
spite of earnings over the current SGA guideline.
Congress should modify the current
Title II disability legislation to provide for a gradual reduction
in DI cash benefits based on increases in earned income.
Unlike SSI, under current program rules there is no provision for
a gradual reduction in the DI cash benefit as earnings increase.
Instead, a Title II beneficiary will either receive the full cash
benefit in a given month or no income support at all. DI program
rules should be amended to provide for a gradual reduction in cash
benefits once earnings exceed an established earned income disregard
level. To minimize complexity and confusion for beneficiaries, it
is recommended that the earned income disregards and exclusions
be comparable to those currently in place in the SSI program. Additionally,
any gradual reduction in the beneficiary's DI benefit should also
be applied to dependent beneficiaries (dependent children and spouses)
or the disincentives will remain for beneficiaries with dependent
family members. Elimination of the SGA cash cliff coupled with a
gradual reduction in cash benefits as earnings increase will provide
an incentive for employment by ensuring an overall positive financial
outcome for DI beneficiaries. These program changes would have the
added benefit of eliminating the need for labor-intensive tracking
of trial work periods, extended periods of eligibility, SGA determinations,
and assessments of special conditions, such as job coaches.
Congress should modify the current
Title II disability legislation to establish a system of continuation
of program eligibility for DI beneficiaries through the creation
of a "beneficiary nonpayment status." The current
DI benefit system consists of a complex set of work incentive phases
with the end result being loss of cash payments if and when countable
gross earnings consistently exceed the SGA guideline. In addition,
once the EPE ends, beneficiaries lose their connection to the program
if earnings continue to remain above the SGA guideline. In addition
to the elimination of the post-eligibility SGA criteria and implementation
of a gradual benefit reduction, program rules should be amended
to provide for a continuation of beneficiary status when cash benefits
are ultimately lost due to earnings. Similar to SSI beneficiaries
in 1619(b), DI beneficiaries with earnings in excess of allowable
limits should retain beneficiary nonpayment status, providing for
immediate reinstatement of benefits should earnings be lost or reduced
at a later time.
Recommendations for Reducing Restrictions on Assets
for SSI Beneficiaries
Congress should direct SSA to develop
and test program additions and regulatory modifications that will
enable SSI beneficiaries to accumulate assets beyond existing limits
through protected accounts and other savings programs. While
PASS and PESS work incentives allow for accumulation of assets related
to self-employment or achieving a future occupational goal, they
are too limited and do not allow beneficiaries to save for other
non-employment-related goals. IDAs, EITCs, and other alternative
savings programs allowed under many state Medicaid buy-in programs
must be explored. Policies should be crosscutting in nature, leveraging
and augmenting resources, services, and outcomes for employment
and health-care-related programs.
SSA should change current program
rules and work with other federal agencies to modify and expand
the value of IDA programs for SSA beneficiaries. To expand
options and availability for beneficiaries, current SSI program
rules should be amended to extend the exclusions that currently
apply to TANF and AFIA IDAs to other state and local IDA programs.
In addition, while homeownership and educational goals are important,
using savings for things such as assistive technology, automobiles,
home repair, transportation, and other purposes should be explored.
Home repair is particularly noteworthy given the decline in affordable
housing stock. IDAs for home repair may enable home accessibility
options otherwise unaffordable to a beneficiary. Finally, shorter,
more immediate savings outcomes are frequently effective for reinforcing
positive money management practices and personal responsibility.
SSA should work collaboratively
with other federal agencies to expand benefits counseling services
to include the full range of financial education and advisement
services. Beneficiaries must have the information, incentive,
and resources necessary to make informed decisions about their financial
goals and planning. In so doing, it is important that train-the-trainer
models be sponsored so that the infrastructure is established to
increase capacity to provide financial advisement services over
time.
Recommendations for Improving Access to Health Care
for DI Beneficiaries
Congress should modify the current
Title II disability legislation to eliminate the Medicare 24-month
qualifying period for DI beneficiaries. Providing critical
health insurance as quickly as possible after disability onset may
act to stem the progression of disability over time and encourage
beneficiaries to better manage their illnesses or disabilities.
With the addition of the prescription drug coverage available as
of January 2006 through the Medicare Modernization Act, this recommendation
becomes even more important.
Recommendations for Decreasing the Complexity of the
DI/SSI Program Rules Governing Income and Resources
Congress should direct SSA to simplify
regulatory earnings definitions and wage verification processes
so that they are consistent across the SSI and DI programs.
SSA should pursue consistent and simplified rules for defining earnings
and treatment of earned income across the SSI and DI programs. Such
a change will not only reduce confusion among beneficiaries but
also will also reduce the current administrative burden on SSA in
the verification and benefit adjustment process.
Congress should direct SSA to modify
regulations related to the treatment of earnings in the DI program
by applying the same rules currently applied in the SSI program.
Specifically, based on a gradual reduction in DI cash benefits,
current SSI rules governing the treatment of earnings used to pay
for work-related expenses under impairment-related work expenses
(IRWE) and blind work expenses (BWE) should be applied in the same
manner to the DI program. This will allow beneficiaries to recover
some, or, in the case of BWE, all of the cost of work-related expenses
in an equitable manner regardless of the type of disability benefit
received. Applying these work incentives in the same manner will
also minimize confusion for beneficiaries.
Summary
In an effort to encourage employment for beneficiaries,
Congress and SSA have made legislative and regulatory changes in
the DI and SSI programs over the past 30 years. The work incentives
that have resulted from these changes are aimed at reducing the
risks and costs associated with loss of benefit support and health
insurance when a beneficiary is employed. Despite these efforts,
significant disincentives to employment in the Social Security disability
benefit programs persist. For example, while the Section 1619(a)
and (b) provisions encourage work by providing increased financial
well-being and continued access to Medicaid, SSI beneficiaries continue
to face a system of complex rules regarding the treatment of income
and resources and their effect on continued benefit eligibility
and payment amount. The disincentives to employment for DI beneficiaries
are even more pronounced, given the risk of benefit loss and reduction
in overall net income as a result of work at the SGA level.
Beneficiaries must carefully consider the risk factors
involved when weighing the uncertainties of success in employment
against the relative security of benefit support. To be effective
in encouraging employment, the SSI and DI programs must be amended
to provide incentives and supports to beneficiaries on a number
of levels. Congress and the Social Security Administration must
take necessary action to remove the financial disincentives, particularly
in the DI program, to ensure that work pays. Changes to current
program rules must likewise be pursued to enable beneficiaries to
maintain a connection to the benefit programs over time. Finally,
the complexity of the program rules governing income and resources
must be simplified and the availability of benefits counseling services
expanded through collaborative efforts across federal agencies.
Chapter V: Coordination
and Collaboration Among Systems
Jane is 54 years old and has multiple sclerosis
(MS). She worked all of her adult life in secretarial or administrative
support positions, but finally had to stop work due to her disability
at the age of 52. She went on her employer's long-term disability
benefits, but both her doctor and the insurance case worker encouraged
her to apply for Social Security Disability Insurance (DI). Jane's
employer did not discuss any return-to-work options with her or
offer her the option of working a lighter schedule or moving to
part-time employment.
Jane's DI benefits began 10 months after she applied.
At the time, she had private health insurance through her husband,
but she was divorced shortly after getting on DI benefits. Jane
could not afford the COBRA coverage available through her ex-husband
or from her previous employer and had not yet served her 24-month
Medicare qualifying period. Medications to treat her MS cost in
excess of $1,000 per month, so she applied for Medicaid under
the medically needy or spend-down program; however, she was found
ineligible due to excess resources. Jane spent all her savings
and financial resources on health care expenses until she reached
the point that she was eligible for the medically needy program.
She became eligible for Medicaid and eventually qualified for
Medicare as well.
Several years later, Jane's medical condition had
improved somewhat and she wanted to find a way to return to work
on a part-time basis. Since she did not feel that her physical
health was good enough to allow her to immediately start working
full time, she had difficulty finding an Employment Network to
accept her Ticket. She did receive services from the state VR
agency and was sent to a benefits specialist. Once Jane learned
what impact earned income would have on her Medicaid eligibility,
she decided that working part time was not worth the possible
loss of Medicaid prescription drug coverage.
Introduction
Expansion of the disability programs and the poor
employment rates of adults with disabilities have become major concerns
for SSA and disability policymakers across the country (GAO, 1994;
GAO, 1996b; GAO, 1998b; Social Security Bulletin, Spring 1996; Congressional
Budget Office Report, 2004). Too often, this alarming growth of
the Social Security disability rolls has been represented and perceived
as SSA's problem to solve in isolation, when in fact it is a larger
societal problem. Receipt of Social Security disability benefits
is merely the last stop on a long journey that many people with
disabilities make from the point of disability onset to the moment
at which disability is so severe that work is not possible (Burkhauser,
2002; McMahon, Danczyk-Hawley, Reid, Habeck, Kregel, and Owens,
2002). All along this journey, individuals encounter the policies
and practices of the other systems involved in disability and employment
issues. When these systems fail to stem the progression of disability
or work at cross-purposes with one another to prevent successful
employment retention or return to work, it is the Social Security
disability system that bears the eventual brunt of this failure.
Ultimately, however, the costs associated with having so many Americans
exiting the nation's workforce to lead lives of dependency on federal
disability benefits are borne by all U.S. citizens.
Any meaningful effort to slow down or reverse this
relentless advance toward federal disability benefits will require
significant and sustained collaboration and coordination between
the Social Security Administration and the other federal agencies
with a stake in developing disability and employment policy. A significant
opportunity to establish such systems collaboration was created
on February 1, 2001, when President George W. Bush announced the
New Freedom Initiative as part of a nationwide effort to remove
barriers to community living for people with disabilities. The New
Freedom Initiative is a comprehensive federal plan that represents
an important step in ensuring that all Americans have the opportunity
to learn and develop skills, engage in productive work, make choices
about their daily lives, and participate fully in their community.
The initiative's goals are as follows:
- Increase access to assistive and universally designed technologies;
- Expand educational opportunities;
- Promote home ownership;
- Integrate Americans with disabilities into the workforce;
- Expand transportation options; and
- Promote full access to community life.
This initiative is particularly important because
it involves so many departments of the Federal Government and has
the force of the White House solidly behind it. Through Executive
Order 13217, President Bush directed six federal agencies--including
the Departments of Justice (DOJ), Education (ED), Labor (DOL), Health
and Human Services (DHHS), and Housing and Urban Development (HUD),
as well as SSA--to "evaluate the policies, programs, statutes,
and regulations of their respective agencies to determine whether
any should be revised or modified to improve the availability of
community-based services for qualified individuals with disabilities"
and to report back to the President with their findings. The Departments
of Transportation (DOT) and Veterans Affairs (VA), the Small Business
Administration (SBA), and the Office of Personnel Management (OPM),
though not specifically named in the executive order, also joined
in the implementation effort. While it is still too early to assess
the full impact of the New Freedom Initiative, the platform it provides
for systems coordination, collaboration, and integration is very
promising.
This chapter examines five major systems with which
SSA must coordinate its efforts in order to create positive change
in the employment of persons with disabilities:
- Health care system - including Medicaid, Medicare, and private
health insurance.
- Rehabilitation system - including the state vocational rehabilitation
(VR) systems, private rehabilitation systems involved with short-term
and long-term disability insurance, workers' compensation programs,
and community rehabilitation programs.
- Employment and training system - including DOL programs such
as One-Stop Career Centers, state employment agencies, and unemployment
insurance (UI) programs.
- Education system - including transition services for students
with disabilities in public schools, vocational/technical education,
and postsecondary educational entities such as community colleges
and universities.
- Business community - including private employers, small businesses,
and large corporations.
For each system, the current status of coordination
and collaboration will be examined and the attempts Congress and
SSA have made in the past 15 years to improve systems collaboration
and coordination will be reviewed. After the discussion of the various
systems, recommendations are provided for policy changes Congress
and SSA could make that would improve coordination and collaboration
in each area.
Health Care System
Working with the major federal health care systems
is nothing new for SSA, since it works closely with the Centers
for Medicare and Medicaid Services (CMS) in the implementation of
both the Medicare and Medicaid programs. Federal law guarantees
that SSI recipients are eligible to receive Medicaid coverage and,
in many states, SSA is charged with making Medicaid eligibility
determinations. Both Medicare and Medicaid are inextricably linked
to the disability benefits provided by SSA, and policy shifts made
by CMS in either of these programs are felt keenly by DI/SSI beneficiaries.
The Problem
The solution lies in taking a long-range view and
attacking the problem at its source: our dysfunctional health care
system, which is grossly inefficient, and often does harm when it
is supposed to be doing good. It doesn't make sense to fine-tune
individual programs when the whole system is broken (William Novelli,
CEO of AARP, February 2005).
One of the most commonly cited reasons Disability
Insurance (DI) and Supplemental Security Income (SSI) beneficiaries
offer for not engaging in work activity is the perceived and real
risk of losing health care benefits (Hanson et al., 2003). Catherine
Kelly Baird, of the California Governor's Committee on the Employment
of People with Disabilities, describes this concern among beneficiaries:
"The big scare is always jumping out of a safety net because
of the very profound fear that once you lose your benefits, you
will never be able to get them again" (Catherine Baird, key
stakeholder interview, November 2004). For individuals with disabilities
who may have significant health care needs or high costs, the thought
of losing health care coverage can be particularly frightening.
Health insurance considerations are also of paramount
importance when beneficiaries make decisions about continuing to
work versus making application for disability benefits. Honeycutt
(2003) found that over two-thirds (70 percent) of recipients were
covered by some form of health insurance in the year before their
application, but less than half (46 percent) of all applicants continued
to be covered at the time of their DI application. Of those with
coverage at the time of application, 20 percent had Medicaid or
"medical assistance." The desperate search for affordable
health insurance fuels the increased SSI/DI application rates as
it simultaneously diminishes the rates of termination due to employment.
Health care concerns may represent the single most salient factor
contributing to increasing rates of dependency on federal disability
benefits and depressed rates of competitive employment for individuals
with disabilities (NCD, 1997b).
Previous Attempts by Congress and SSA to Impact the
Health Care System
This section will examine the two federal health care
systems (Medicaid and Medicare) separately, as these programs function
so differently. The final section will examine SSA's efforts to
impact the private health care system -- primarily employer-sponsored
health care plans.
Medicaid Issues. In the past
15 years, SSA has made a significant effort to reduce the employment
disincentives related to loss of Medicaid coverage. In 1987, SSA
collaborated with the Health Care Financing Administration (HCFA,
now CMS) to permanently implement the 1619(b) extended Medicaid
coverage for SSI recipients who work. This provision provides continued
Medicaid coverage for individuals whose incomes are too high to
qualify for an SSI cash payment but are not high enough to offset
the loss of Medicaid and/or publicly funded attendant care. It allows
SSA to disregard earned income when determining Medicaid eligibility
up to the state's designated threshold amount (SSA POMS SI 01715.015
- Special Groups of Former SSI Recipients). This one provision is
arguably the most powerful work incentive in the SSI program (Sheldon,
n.d.b; Virginia Commonwealth University, 2002).
SSA has also worked in close partnership with CMS
to expand Medicaid buy-in programs for individuals with disabilities
who work. As described in Chapter I, the Ticket to Work and Work
Incentives Improvement Act of 1999 (TWWIIA) includes two key provisions
designed to expand authority originally granted to states under
the 1997 Balanced Budget Act (BBA) to provide Medicaid coverage
to working people with disabilities. The Medicaid buy-in program
is targeted at individuals who otherwise would not qualify for Medicaid
coverage because their earnings or personal assets exceed established
thresholds. Under TWWIIA, states have considerable flexibility in
terms of establishing asset, resource, and income limits for working
individuals with disabilities between the ages of 16 and 64. In
addition to the Medicaid buy-in program, Section 203 of the Act
created a grant program through the Department of Health and Human
Services (HHS) that would encourage and support states in developing
a buy-in program. These grants, termed Medicaid Infrastructure Grants
(MIGs), permitted states considerable freedom to address a variety
of work-incentive issues in their state systems. Eligibility for
MIG grants was based to a large extent on the state's willingness
to provide personal assistance services to employed individuals
with disabilities.
Currently 32 states have implemented buy-in programs
and, while Medicaid buy-in programs have been operational for several
years now, enrollments in many states remain relatively low (Goodman
and Livermore, 2004). In some cases, this may be due to poor public
awareness efforts. Other factors affecting enrollment may include
the procedures used by states to verify disability and work activity,
and whether or not the enrollment process is automated. The effectiveness
of buy-in programs is also contingent on the ability of people with
disabilities to make informed choices. The buy-in has added another
dimension of complexity to the already complex employment decisions
of people with disabilities. Unless the employment support system
for people with disabilities is markedly simplified in the future,
the need for benefit specialists will continue to increase, limiting
the effectiveness of federal and state initiatives attempting to
promote the employment of people with disabilities.
Unfortunately, SSA and CMS have not worked collaboratively
to identify and eliminate work disincentives inherent in the various
Medicaid waiver programs. The effect of earned income is still a
major problem for individuals enrolled in the medically needy or
spend-down program, Home and Community Based Services (HCBS) waivers,
extended Medicaid coverage for former SSI recipients who become
entitled to Title II childhood disability benefits, and other special
state-specific waivers. Income and resource rules governing both
eligibility and patient liability or share of cost for these waiver
programs often penalize paid employment. While 1619(b) provisions
may protect basic Medicaid eligibility for SSI recipients who work,
there are no such provisions to protect the special services and
supports Medicaid pays for through the waiver programs.
A promising new collaborative effort between SSA and
CMS are the work incentives for participants in the Florida Freedom
Initiative (FFI). The FFI is a demonstration currently being conducted
by CMS through the Florida Agency for Persons with Disabilities.
The demonstration is based on a cash and counseling model in which
participants receive a monthly cash allowance instead of traditional
services provided by the agency. Participants use the allowance
to purchase necessary services from the provider of their choice.
SSA is collaborating with CMS by modifying a number of SSI program
rules to test whether a combination of CMS and SSA waivers will
improve the employment outcomes of participants. This project is
far too new to generate definitive results, but it is an example
of SSA and CMS working together to enhance consumer choice, control,
and empowerment.
Medicare Issues. In addition
to FFI, SSA has actively engaged CMS in developing solutions to
the problem of beneficiaries fearing the loss of Medicare coverage
due to paid employment. With the passage of the Ticket legislation
in 1999, the extended period of Medicare coverage (EPMC) was created.
This extended premium-free Medicare coverage for beneficiaries who
lose cash benefits due to work for a minimum of 93 months after
the end of the trial work period. In many instances, Medicare coverage
may extend well beyond 93 months. In addition, SSA and CMS worked
to create a Medicare buy-in option for qualified disabled and working
individuals (QDWI). This provision allows eligible individuals to
purchase Medicare Part A if Medicare benefits were lost due to return
to work at a substantial level. To be eligible for QDWI, an individual
must have countable income of more than 120 percent but less than
135 percent of the federal poverty level, countable resources not
exceeding twice the SSI limit, and not otherwise be eligible for
Medicaid. Eligibility for Medicaid benefits under the QDWI program
is limited to payment of Medicare Part A premiums. Finally, the
new Medicare Modernization Act (MMA) will add a prescription drug
benefit, a provision that has significant consequences for SSA beneficiaries
with serious health conditions requiring medications.
Unfortunately, there are still Medicare issues that
create barriers to the return-to-work efforts of SSA beneficiaries.
The 24-month Medicare qualifying period (MQP) that DI beneficiaries
must serve before Medicare coverage begins often denies individuals
access to health care supports at the point at which they are most
urgently needed. By the time beneficiaries start receiving DI payments,
most have lost employer-sponsored health coverage and have been
unable to afford to pay the COBRA premiums. By not providing even
the minimum levels of health insurance provided by Medicare for
two full years, the medical condition of some beneficiaries may
deteriorate to the point that employment is impossible.
Medicare costs are taking up an increasing portion
of the overall federal budget, and the program could become part
of the growing problem of funding the U.S. health care system,
U.S. Comptroller General David Walker warned at an event in May
2005. Walker said, "If there's one thing that can bankrupt
the country, it's health care. It's out of control." According
to Reuters/Yahoo! News, the Bush Administration recently estimated
that the total cost of the new Medicare prescription drug benefit
alone will be $724 billion over the next 10 years (American Health
Line, May 2005).
Private Health Insurance Issues.
Private health coverage remains elusive for people with disabilities
for numerous reasons. First, most U.S. health care coverage
is provided through employer-sponsored plans accessed affordably while
the person (or a legal partner) is employed (Glied and Borzi,
2004). Data shows steadily decreasing enrollment rates across all
categories, but the most significant reductions occur in low-income
categories (Davis, 2002) where other data locates many workers
with disabilities (Hanson, Neuman, Dutwin, and Kasper, 2003).
Illness or injury resulting in disability can be
a cause of unemployment, leading to loss of health insurance at
inopportune times for a return to work or sustained health care
(Bagenstos, 2004). While it is theoretically possible to purchase
health care coverage on the open market between jobs, through COBRA
protections or state high-risk insurance pools, the out-of-pocket
cost at these times is prohibitive for individuals who are
unemployed with no regular source of income. Medicaid coverage,
outside of recent and still little-used Medicaid buy-ins, may not
be even considered by large numbers of those eligible as a means
of accessing uninterrupted health coverage after or in between employment
situations.
Attaining coverage when severe preexisting conditions
(i.e., the disability) are in evidence presents another challenge
(Miller and Luft, 1997). In order to access the public health insurance
system such as Medicaid, individuals with disabilities must have
little income and few assets. It is common for people to bankrupt
themselves trying to pay for the medical services they need. There
is recent data that links high medical bills as the top reason for
filing bankruptcy (Himmelstein, Warren, Thorne, and Woolhandler,
n.d.).
Both SSA and CMS are aware of the problems beneficiaries
with disabilities face in accessing employer-sponsored health insurance
due to the cost of premiums, co-payments, and deductibles. In an
effort to improve this situation, the Omnibus Budget Reconciliation
Act of 1990 (OBRA '90) required all states to enact a program to
identify cases in which enrollment of a Medicaid recipient in a
group health plan is cost-effective. An individual's enrollment
in a group health plan is considered cost-effective if the expenditures
in Medicaid payments are likely to be greater than the cost of paying
the premiums and cost-sharing obligations under an employer group
health plan for those services. The state-run Health Insurance Premium
Payment (HIPP) programs can provide beneficiaries with access to
private, employer-sponsored health coverage through premium payments.
The beneficiary can use employer-sponsored coverage and access Medicaid
for any services not covered under the employer's plan. The problem
is that to use HIPP coverage, the person must have access to an
employer-sponsored plan. This becomes a bit of a vicious cycle,
since so many people with disabilities are currently unemployed
or employed in part-time jobs that do not offer health insurance.
A 1997 study conducted by the Government Accountability
Office (GAO, 1997) showed that HIPP enrollment has been low across
states primarily because of difficulty in identifying potential
enrollees. Many state Medicaid eligibility workers have limited
knowledge about HIPP, and those who are aware of the program find
it difficult to determine which beneficiaries have access to employer-sponsored
health coverage. Many Medicaid recipients do not disclose their
access to employer-sponsored health coverage because they fear they
will lose Medicaid eligibility. Complex private health coverage
rules for enrollment add to the confusion and ambivalence in participating
in the program. Employers also play a role in the low enrollment
rate in HIPP programs. To pay premiums, Medicaid requires information
about the employers' health plans. Many employers fail to respond
to requests for health insurance information for Medicaid recipients,
and without the employers' support, Medicaid recipients cannot access
this coverage.
From the employer's or insurer's perspective, transitioning
workers with disabilities off private insurance and onto the public
benefit rolls makes sense. This is a perfect example of how private
insurance companies and/or self-insured employers manage risk by
limiting their short-term exposure. In the current system, there
is every incentive for insurance companies to identify those individuals
with the most severe conditions and move them as quickly as possible
onto the Social Security rolls. In fact, this practice is so common
that an entire industry has emerged to expedite movement of beneficiaries
through the various short-term and long-term disability programs
and ultimately onto the public disability system (McMahon et al.,
2002). While the lack of private health insurance continues to be
a major contributing factor in the growth of the SSI/DI rolls, SSA
has not attempted to engage the business community or the insurance
industry in a collaborative problem-solving process. This represents
a major missed opportunity.
Vocational Rehabilitation System
The Problem
The passage of TWWIIA was a demonstration of SSA's
recognition that the primary reason so many beneficiaries with disabilities
remain unemployed is their inability to access the services and
supports needed to make work a reality. This section describes past
and current attempts by SSA to improve employment outcomes by offering
incentives to state VR agencies and, recently, to community rehabilitation
programs or other service providers.
Previous Attempts by Congress and SSA to Impact the
Rehabilitation System
Social Security's past efforts to work collaboratively
with the rehabilitation system have focused overwhelmingly on the
SVRAs. It has only been since the passage of the Ticket to Work
and Work Incentives Improvement Act in 1999 that SSA began a serious
attempt to reach out to the world of private nonprofit and for-profit
rehabilitation agencies. These efforts began with the establishment
of the SSA VR reimbursement program in 1983. As described in Chapter
I, the SSA VR reimbursement program was a massive effort that increased
in size and cost every year from 1983 to 2002 (Kregel and Revell,
2003). In FY 2002, the program served more than 10,000 individuals
at a cost to SSA of over $130 million, although reimbursements have
declined in recent years (Rowlette, 2004). Many states viewed the
SSA VR reimbursement program as a major source of revenue and relied
on these funds to operate their programs. SSA cost reimbursement
accounts for approximately 5 percent of all case service monies
available to the state VR agencies and represented a crucial source
of revenue during a period of extreme budget pressures in many states.
The problem with the VR reimbursement program from
SSA's perspective was that the employment outcomes continued to
be disappointing and SSA was continuously under pressure from consumer
groups to expand the choice of service providers. In 1994, SSA expanded
the reimbursement program to include "alternative providers."
This allowed other public or private rehabilitation agencies to
apply for provider status in order to receive SSA cost reimbursement
in the same way the SVRAs did. The alternative provider program,
as it came to be called, was never very successful, because most
private rehabilitation agencies did not have sufficient resources
or cash flow to be able to delay reimbursement for such a long time.
The TWWIIA legislation made state VR agencies critical
to the overall implementation of TTW. They are currently the only
entity that can provide services to SSA beneficiaries under the
traditional SSA VR cost reimbursement payment mechanism, a program
that has been in place for more than 20 years and has grown significantly
in the recent past. SVRAs are also unique in that they have a legislative
responsibility to provide services to all eligible beneficiaries
under their current authorizing legislation, Title I of the Rehabilitation
Act. Finally, SVRAs are able to use existing Title I monies, coupled
with funds from other sources, to serve beneficiaries while simultaneously
receiving funds from SSA to reimburse the SVRA for the same services
it is obligated to provide under Title I.
The dominance of the VR agencies in Ticket assignments
is ironic, since the TTW program appears to have been created in
large part to establish an alternative to the SVRAs for SSA beneficiaries
seeking employment supports as they attempt to return to work. The
legislation attempts to enhance consumer choice and independence
by allowing beneficiaries to choose from an array of available providers
that compete freely for the opportunity to receive the individual's
Ticket and provide employment services. In implementing the TTW
program, SSA has devoted significant resources to attempting to
entice nontraditional employment service providers to participate
in the program and provide previously unavailable services to beneficiaries.
As of October 11, 2004, SSA had mailed Tickets to 10,050,310 beneficiaries,
and 67,383 Tickets had been assigned to Employment Networks (ENs)
and state VR agencies. Of the 67,383 assignments, 61,347 or 91 percent
have been assigned to state VR agencies.
Based on initial evaluation results, the TTW program
has failed to live up to the high expectations for it (Thornton
et al., 2004). Beneficiary participation in the Ticket program is
very low, with only 1 percent of Ticket holders having assigned
their Ticket to an EN. When assignments do occur, they are overwhelmingly
to SVRAs, which indicates that consumer choice has not been significantly
improved. Recruitment and retention of ENs has been very challenging
and EN Ticket assignments are concentrated among a few providers,
with over 80 percent of all ENs having accepted five or fewer Tickets.
Finally, virtually all ENs other than the state VR agencies report
that they are losing money on their TTW operations. Obviously, the
payment mechanisms are not working as they were intended and are
not acting as incentives for new providers to offer employment services
or supports to SSA beneficiaries. Currently, the TTW regulations
are under review by SSA and are expected to be significantly revised
(Gerry, 2005).
Collaboration with the Rehabilitation
Service Administration - The State Partnership Systems Change Initiative.
Under a March 1998 Executive Order, the President created the National
Task Force on Employment of Adults with Disabilities. The first
initiative under this executive order was the establishment of the
State Partnership Systems Change Initiative (SPI). The purpose of
SPI was to support selected project states in the development of
innovative service delivery systems that would increase employment
of individuals with disabilities, such as employer partnerships,
customer-driven services, waivers and buy-in, state policy change
initiatives, benefits assistance, and employment supports and programs.
SSA and RSA funded a combined total of 18 demonstration
projects. SSA awarded grants to 12 states to develop innovative
projects to assist adults with disabilities in their efforts to
reenter the workforce. RSA funded systems change projects in six
states. These awards helped states develop statewide programs of
services and support for their residents with disabilities that
attempted to increase job opportunities and decrease their dependence
on benefits. Other federal agencies, such as DOL and HHS, joined
SSA in support of these projects. The SPI projects were completed
only recently and evaluation of project results is currently under
way.
Collaboration with Private Rehabilitation
Agencies and Community Rehabilitation Programs (CRPs). As
previously described, SSA began to interact with private rehabilitation
agencies as early as 1994 with the initiation of the alternative
provider initiative and has increased interaction with these entities
through the TTW program. Thus far, the relationship between SSA
and the private rehabilitation community has been difficult, primarily
due to the payment mechanisms inherent in the TTW program and what
CRPs often view as preferential treatment provided to the SVRAs.
Many of the recommendations that have been made by the SSA Ticket
Advisory Panel address these concerns.
Employment and Training System
The Problem
SSA has made a monumental effort in the past five
years to increase coordination and collaboration with DOL's Employment
and Training Administration (DOLETA). The passage of the Workforce
Investment Act (WIA) of 1998 initiated a major reorganization of
the nation's employment programs that was intended to consolidate
preparation and employment services into a unified system of support.
Key to this reorganization was the creation of a national network
of One-Stop Career Centers throughout the United States and its
territories, to provide a single place where job seekers and potential
job seekers can receive the services that they need to become employed
or reemployed (Morris and Farah, 2002). Although previous DOL employment
programs, such as the Job Training Partnership Act, had been largely
ineffective in serving individuals with significant disabilities,
WIA presented a new opportunity for beneficiaries to successfully
access and benefit from the same employment services as those available
to the general public (Bader, 2003). Prior to the passage of WIA,
formal interaction between SSA and DOL had rarely occurred.
Previous Attempts by Congress and SSA to Impact the
Federal Employment and Training System
The following section describes prior and current
collaborative efforts on the part of DOL and SSA. As previously
noted, collaboration between these two federal agencies began primarily
with the passage of the WIA 1998 when DOL moved toward full implementation
of the One-Stop Career Center system.
Work Incentive Grants - One
of the first areas in which SSA worked collaboratively with DOLETA
was on the Work Incentive Grant (WIG) initiative that began in 2001.
This initiative provided competitive grants designed to enhance
the employability, employment, and career advancement of people
with disabilities through enhanced service delivery in the new One-Stop
system established under WIA. The WIG program provides grant funds
to consortia and/or partnerships of public and private nonprofit
entities working in coordination with the One-Stop system to augment
the existing programs and services and ensure programmatic access
and streamlined, seamless service delivery for people with disabilities.
Although SSA did not provide funding for WIG projects, it did envision
the inclusion of benefits planning and counseling as a service available
in One-Stop Career Centers. WIG project personnel were permitted
to attend the required Benefits Planning, Assistance, and Outreach
(BPAO) training and also were invited to training events funded
through the SSA/RSA collaborative State Partnership Initiative.
Although only a few of the WIGs became BPAO providers, it is clear
that SSA was working to facilitate the coordination of their own
employment demonstration projects with WIGs interested in collaboration.
Disability Program Navigator
- In 2002, recognizing that specialized supports would be necessary
to make certain that SSA beneficiaries would have the opportunity
to fully participate in WIA programs, SSA and DOL collaboratively
developed, funded, and piloted a new position -- disability program
navigator -- to assist individuals with disabilities to access and
benefit from One-Stop Career Centers. The disability program navigator
position is designed to assist individuals with disabilities work
their way through the complex eligibility criteria and program rules
in the various disability systems that often discourage people with
disabilities from working. Disability navigators assist people with
disabilities access the wide variety of programs available to support
their successful entry or reentry into the workforce, connecting
such individuals to programs and the benefits, services, and/or
supports they provide, and following up to ensure that each individual
is receiving the level of benefits, services, and/or supports needed.
In addition, navigators serve as a One-Stop Career Center resource
on Social Security work incentives and other employment support
programs, including the Ticket to Work program and the provision
of services through BPAO organizations, the protection and advocacy
systems (P&As), SSA's employment-related demonstration projects,
and state vocational rehabilitation agencies. As of June 2004, DOLETA
had established disability program navigators in 17 states. An outcome
evaluation of the program is in its initial stages.
Developing Work Records and Earnings
Histories - In another example of collaboration with DOL,
SSA area offices have begun establishing agreements with state unemployment
insurance (UI) agencies to use the quarterly wage data they collect
to assist with developing work records and earnings histories. This
is an excellent strategy, since UI data offers more complete data
than the IRS files and provides this data quarterly instead of annually.
Since overpayments due to unreported work activities create significant
problems in the DI system, this development is extremely positive.
In a similar collaborative effort, SSA has established the ability
to periodically match all SSI beneficiaries against wage and new-hire
data in the Office of Child Support Enforcement's National Directory
of New Hires, thus enabling the agency to more expeditiously identify
individuals with earned income.
Office of Disability Employment
Policy - SSA has also been involved in a minor way with the
activities of DOL's Office of Disability Employment Policy (ODEP).
ODEP currently has a number of demonstration initiatives under way,
including its recent series of Customized Employment Grants. The
purpose of the Customized Employment Grant Initiative, begun by
ODEP in FY 2001 and continued in FY 2002, is to provide funds to
selected Local Workforce Investment Boards to build the capacity
in local One-Stop Career Centers to provide customized employment
services to persons with disabilities who may not now be regularly
targeted for services by the One-Stop Career Center system.
In response to the employment goals in the President's
New Freedom Initiative, ODEP also has recently developed the Small
Business and Self Employment Service (SBSES). This new program provides
information, counseling, and referrals about self-employment and
small business ownership opportunities for people with disabilities.
The SBSES is housed in and operated by the Job Accommodation Network.
The main objective of the SBSES is to support people with disabilities
in their efforts to start and successfully manage profitable small
businesses. Although the program briefly references the Social Security
benefits and work incentives such as PASS in its informational materials,
there is no linkage to the SSA Web site or any other site containing
specific information on the effect of self-employment on disability
benefits. (For more information, go to www.dol.gov/odep/programs/promotin.htm.)
Similarly, SSA fails to reference any assistance that people with
disabilities can receive in developing small businesses or microenterprises
on its Web pages or in its printed informational materials.
Another area of the DOL system that SSA also needs
to work more closely with is state unemployment insurance programs.
One of the current problems with the UI system is that applicants
have to be "able to work" and actively seeking work to
get UI benefits. These benefits are generally not payable to unemployed
individuals who are sick or unable to work for any reason (DOLETA,
2005). It is not uncommon for UI benefits to be denied to individuals
who indicate that they are disabled, even though disability and
employment are not necessarily mutually exclusive. In some cases,
BPAO providers have reported that state UI workers have denied benefits
to people who indicate that they receive any form of SSA disability
benefit. Apparently, the rationale here is that people who get SSA
disability benefits are by definition too disabled to work at a
substantial level -- truly a catch-22 situation. Since UI benefits
are not payable to people who are disabled (i.e., unable to work),
many applicants are afraid to mention that they have impairments
or are on disability benefits. A more functional strategy would
be for SSA and the state VR agencies to work with the state UI agencies
to develop ways to probe for indicators of disability during the
initial interview or application for unemployment benefits (Golden,
O'Mara, Ferrell, and Sheldon, 2005).
Educational System
The successful transition of students with disabilities
from school to work or postsecondary training and education is a
major policy initiative for several federal agencies, including
the U.S. Department of Education (ED), DOL, and SSA. Many of the
students who are the target of these initiatives are receiving Social
Security disability benefits such as SSI or Title II Childhood Disability
Benefits (Miller and O'Mara, 2003). In a recent NCD report discussing
financial aid barriers faced by youth with disabilities, Moore states,
"It is in the best interest of this country that the next generation
of young people with disabilities is competent and adequately prepared
to enter the workforce rather than depending on Social Security
and welfare benefits" (Moore, 2003). Unfortunately, misinformation
and fear of losing cash benefits and/or medical benefits have prompted
transition-aged beneficiaries and their families to limit their
employment and educational options, even though they have a strong
desire to enter the labor force (Brooke, 2003). As discussed below,
there is a clear need for all systems involved with transition-aged
youth to coordinate their efforts to provide accurate and complete
information to beneficiaries and their families as they attempt
to exit secondary education and transition into the community.
The Problem
The problem on the educational systems front is really
twofold. First, many SSI recipients first apply for benefits as
children while enrolled in public schools. These individuals often
remain on the rolls well into adulthood, with very few transitioning
from high school into substantial employment after graduation (GAO,
1996b; GAO, 1998b). Failure of the public school system to implement
successful transition services or programs creates an ongoing dependency
on public benefits. The impact of Social Security benefits on transition-aged
youth is seldom considered during the formal transition planning
process conducted by school personnel. This failure to focus on
Social Security and other public benefits during transition is not
only a missed opportunity, but harm may be caused when students
and family members are not educated about or prepared for the effect
of earnings on cash benefits and medical insurance (Miller and O'Mara,
2003).
Differences in public policies and programs may account
not only for the growth of younger entrants on the SSI and DI rolls
but also the confusion about eligibility and program purposes. In
the NCD report Transition and Post-School Outcomes
for Youth with Disabilities: Closing the Gaps to Postsecondary Education
and Employment (NCD, 2000), the conflict between IDEA and
SSA rules is illustrated.
For example, technical assistance provided by the
U.S. Department of Education's Office of Special Education Programs
(OSEP) through the National Transition Alliance (Halloran and
Austin, 1998, p. 3; NTN, 1998) staunchly promotes application
to the SSI program by youth in special education. This raises
concerns about schools encouraging "students with certain
disabilities" to apply for SSI. This strategy could be viewed
as inconsistent with the IDEA requirement for services based on
each child's individual need, rather than on a category or type
of disability. OSEP is required by IDEA to implement "transition"
policies and programs that are designed to promote successful
transition of youth from secondary school to the world of work
and adult life. At the same time, SSA is required by the Social
Security Act to implement policies and programs that provide cash
benefit to children and youth whose disability prevents their
employment. The eligibility requirements are different for children
and adults. To become enrolled (that is, to be determined eligible
by SSA), youth over 18 years of age must present themselves as
being unable to be employed. At the very minimum, these public
policies and their interpretation appear to be in direct conflict.
Second, there is the problem of poor educational attainment
of DI beneficiaries who enter the disability system later in life.
A 2004 study conducted by the Congressional Budget Office found
that a significant number of baby boomers aged 51 through 61 years
are leaving the labor force due to disability, primarily musculoskeletal
or cardiopulmonary conditions. Unfortunately, this group is characterized
by low educational attainment, with over 25 percent not having completed
high school and only 5 percent having an undergraduate college degree.
These beneficiaries also tend to have histories of low-skilled,
fairly low-wage employment, such as factory or service work (Congressional
Budget Office, 2004). Efforts to help this population return to
work will be stymied by their lack of education and marketable job
skills -- particularly in today's highly competitive information
economy. It is now more important than ever that people of all ages
have access to higher education and the financial means to pay for
training and education (Moore, 2003).
Although SSA recognizes the connection between postsecondary
education and/or training and the ability to achieve competitive
employment, no efforts have been made to date to engage higher education
in any federal interagency collaborative efforts. The Social Security
disability programs do offer work incentives that encourage postsecondary
education, such as the student earned income exclusion (SEIE) and
the Plan for Achieving Self-Support (PASS), but the impact of these
incentives has been limited.
Previous Attempts by Congress and SSA to Impact the
Educational System and Youth
The following section describes specific projects
that SSA has implemented to try to enhance successful transition
of beneficiaries from secondary school to employment and adult life
in the community. For the most part, these projects have been operated
either directly by SSA or as grants from SSA to community-based
organizations.
Graduating to Independence
- SSA has become increasingly aware of the importance of working
with educational systems, particularly public high schools, in its
efforts to promote employment of younger beneficiaries. In the late
1990s, SSA created an education kit called "Graduating to Independence"
(GTI) aimed specifically at youth in transition from education to
employment and their families. The kit is designed for use by educators
and professional organizations to instruct young beneficiaries and
their families about SSA's work incentives. The multimedia kit contains
a videotape and several computer disks in addition to written materials
that combine facts with motivational examples. SSA has been fairly
aggressive in distributing the GTI kits, sending them to school
districts across the country and handing them out at national conferences.
The impact of this public information effort has not been evaluated
to date.
SSA's "I Can Work" Project
- Beginning in 2000, SSA initiated a special school-to-work
transition pilot project through a contract with MAXIMUS, Inc. in
the states of Maryland and Florida. This program targeted youth
age 15 to 16 years old who were SSI recipients and enrolled in the
public education system (Smith, 2002). The interventions included
vocational assessment and employment-focused transition planning
combined with a case management approach in which referrals to community
resources were coordinated. Actual employment services and supports
were delivered by community agencies such as the state VR agency
and other community rehabilitation programs. Efforts were also made
to provide information about the effect of paid employment on Social
Security benefits and the use of applicable work incentives. Based
on the written report submitted to SSA by MAXIMUS, Inc. summarizing
the results after three years of implementation, the pilot program
was successful in increasing participation in transition planning,
increasing family participation in the Individualized Education
Planning (IEP) process, and increasing the employment of participants
during school and after graduation (Smith, 2002). No external independent
evaluation has been conducted on this program to date, so objective
assessment of project results is not available.
Cooperative Agreement with D.C.
Children's National Medical Center - An innovative program
was undertaken by Children's National Medical Center and the school
system in Washington, D.C., in the late 1990s to provide transition
planning for SSI youth 11-21 years of age. Participants received
vocational counseling with their parents, attended transition workshops,
and were given opportunities for leadership development and college
preparation (McGill, 2002). SSA's four-year cooperative agreement
with Children's Medical Center has ended, but the Adolescent Employment
Readiness Center continues to exist.
Youth Transition Process Demonstration
- In 2003, SSA initiated Youth Transition Demonstration (YTD) projects
designed to test the impact of a comprehensive package of services
and SSI waivers on the postsecondary educational and employment
outcomes of SSI beneficiaries between the ages of 14 and 25 years.
SSA has awarded seven cooperative agreements in six states: California,
Colorado, Iowa, Maryland, Mississippi, and New York. The demonstration
projects are designing and implementing interventions that include
services and supports such as benefits advisement, service coordination,
disability program navigators, enhanced individual development accounts,
and job placement and training services. In addition, SSA is testing
the effect of waiving five SSI program rules for participants:
- Participants determined by their age 18 reviews to no longer
be eligible for SSI benefits may retain those benefits as long
as they participate in the project.
- Participants may receive the student earned income exclusion
(SEIE) through the age of 25.
- Participants will benefit from a $1 for every $4 benefit offset
for earnings above the general earned income exclusion.
- Participants will be allowed greater flexibility in the establishment
and implementation of IDAs.
- Participants will be allowed to establish goals for PASS accounts
that target either postsecondary education or employment outcomes.
The Youth Transition Demonstration projects are too
new for any results to be evident, but the effort is commendable.
SSA is well aware of the importance of early intervention with the
younger beneficiaries in any efforts to enhance employment outcomes
for adults with disabilities. The earlier students are exposed to
employment and the more the expectation of work is reinforced and
supported during school, the greater the likelihood that they will
be gainfully employed upon graduation (Miller and O'Mara, 2003).
Employers, Business Community, and Private Insurance
Industry
The Problem
SSA has had very limited involvement with employers
or the business community around the issues of return to work, early
intervention, or preventing individuals from joining the disability
rolls. So far, SSA has focused its attempts to engage employers
primarily on programs that encourage businesses to hire beneficiaries.
Previous Attempts by Congress and SSA to Impact the
Employer, Business, and Private Insurance Systems
The following section describes the efforts SSA has
made to engage the business community in efforts to reduce the disability
rolls or at least stem the recent growth. For the most part, SSA
has focused on finding ways to encourage businesses to hire persons
with disabilities, as evidenced by the Ticket to Hire program detailed
below. This section also examines some of the state-of-the-art approaches
businesses are using to decrease the incidence of disability at
the workplace as well as return ill or injured workers to employment
more quickly. There are some interesting lessons on prevention and
early intervention coming out of the private insurance systems using
innovative disability management techniques, which may be applicable
to the Social Security disability system.
Ticket to Hire - Currently,
SSA operates the Ticket to Hire program in conjunction with the
Ticket to Work initiative. This program is a national referral service
for employers interested in hiring individuals who experience disability.
The Ticket to Hire program links employers to the approved Employment
Networks in their area that have qualified candidates with disabilities
who have assigned their Ticket. The Ticket to Hire program is a
free, Web-based service that employers can access through the SSA
Web site.
Disability Management Programs
- While the past 15 years have witnessed tremendous growth in the
public disability rolls, private businesses have been learning how
to manage the costs associated with disability. Since the late 1980s,
there has been a growing awareness in the business and private insurance
communities that focusing on cutting short-term costs of medical
coverage and wage replacement programs for employees who are ill,
injured, or disabled actually increases total expenditures over
the long term (Habeck and Hunt, 1999; Integrated Benefits Institute,
2004). The lost productivity costs of employee absences due to illness,
injury, or disability may be up to seven times higher than the cost
of wage replacement payments such as short-term disability (STD)
or long-term disability (LTD) alone. Combined wage replacement payments
and lost productivity costs outweigh medical payments for workers'
compensation and group health by more than four to one (IBI, 2004).
Companies are beginning to realize that the costs of disability
are measured not just by insurance premiums but also by lost workplace
efficiency, disrupted customer relationships, expenses related to
hiring and training new workers, and added administrative costs
(Watson Wyatt and Washington Business Group on Health, 1999). The
new thinking is that the optimal outcome of any disability claim
is the employee's return to a healthy and productive life -- not
ongoing dependence on a progression of wage replacement payments.
To reduce the full and true cost of disability, businesses
increasingly have been implementing disability management (DM) programs.
This term refers to a proactive, employer-based approach to (a)
prevent and limit disability; (b) provide early intervention for
health and disability risk factors; and (c) foster coordinated disability
administrative and rehabilitation strategies to promote cost-effective
restoration and return-to-work strategies (Williams and Westmoreland,
2002). DM is characterized by a prevention and remediation approach
that seeks to prevent disability from occurring, or to intervene
very quickly after the onset of illness, injury, or disability with
the goal of returning individuals to productive employment (Habeck
and Hunt, 1999). Research has shown that the following are the most
effective components of DM programs:
- Common case management techniques characterized by ongoing
open communication among ill or injured employees, supervisors,
physicians, and designated case managers to resolve issues preventing
a speedy return to work.
- Aggressive return-to-work policies and strategies, including
modified job duties, transitional job duties, job site accommodations,
and vocational counseling.
- Active coordinated management of work and non-work-related
disability issues.
- Identifiable, simple, and coordinated points for intake and
claims reporting for all disability issues (Calkins, Lui, and
Wood, 2000; Williams and Westmoreland, 2002).
The growing success of DM approaches has some profound
implications for stemming the growth of the Social Security disability
rolls. Perhaps if more companies consistently utilized this approach,
fewer ill or injured workers would experience a progression of disability
benefits (PODB) that ultimately ends up in an application for Social
Security disability benefits. Even if DM techniques served to merely
delay or slow down the PODB phenomenon, it would result in substantial
savings for the DI Trust Fund. SSA would be well served to initiate
collaborative efforts with private insurers and the business community
that would result in slowing the progression of injured workers
onto the DI roles.
Recommendations for SSA Policy Changes
The following sections delineate recommendations for
ways SSA could improve collaboration with each of the five major
systems discussed above: the health care system; VR system; federal
employment and training system; educational systems; and employer,
business, and private insurance systems. Recommendations are specifically
targeted at steps Congress and SSA could take to enhance collaboration
among the various systems to improve the employment outcomes of
DI and SSI beneficiaries and reduce dependency on public benefits
Collaborating with the Health Care Systems
While SSA and the Centers for Medicare and Medicaid
Services (CMS) have made significant strides in coordinating their
respective systems in the past 15 years in order to promote employment
outcomes for people with disabilities, a substantial amount of work
remains. The following are examples of policies that continue to
work at cross-purposes.
CMS and SSA should work together
closely to modify existing program regulations in order to uncouple
Medicare and Medicaid coverage from DI/SSI cash payments, similar
to the way in which Medicare coverage is currently provided to persons
with end-stage renal disease or the Medicaid buy-in program.
Anecdotal reports indicate that many individuals would forgo cash
payments entirely if they could access affordable health care.
SSA, CMS, and state Medicaid agencies
need to work together to identify and eliminate the many employment
disincentives currently built into the Medicaid waiver, Medicaid
buy-in, and Health Insurance Premium Payment (HIPP) programs.
Income and resource rules governing both eligibility and patient
liability or share of cost often penalize paid employment for individuals
receiving services through Medicaid waiver programs. In addition,
there remain many aspects in state Medicaid buy-in programs that
are problematic, such as low resource or asset limits, deeming of
spousal income, and limited pharmacy coverage. Finally, implementation
of the HIPP program needs serious attention. There are numerous
places in this program where the systems fail to interface correctly.
SSA needs to become a more active partner in helping state Medicaid
agencies train workers, inform beneficiaries, and educate employers
about this special assistance with health care costs. It does not
make fiscal sense to have beneficiaries choosing to stay on expensive
public health care benefits when employer-sponsored plans are available.
SSA and CMS should work collaboratively
to examine the Medicare programs for policies that do not promote
paid employment or that encourage earlier application for DI benefits.
As recommended elsewhere, eliminating the 24-month Medicare qualifying
period would enable some beneficiaries to access needed health care
at a crucial period in their return-to-work efforts. Another alternative
would be to expand the Medicare buy-in option. Currently, this option
is offered only to individuals who were awarded DI benefits but
subsequently became ineligible due to engaging in SGA. Another policy
change that would encourage employment would be to allow beneficiaries
to deduct the cost of health care premiums from earnings for the
purposes of SGA determinations. This might encourage beneficiaries
to work more and participate in employer-sponsored health care plans
that may require premiums, co-payments, and deductibles otherwise
viewed as unaffordable.
Congress should direct SSA and CMS
to conduct a complete review of the current Medicaid and Medicare
programs to identify and correct inconsistencies between the two
programs that result in disincentives to employment for beneficiaries.
There are currently numerous system interface problems between the
Medicaid and Medicare programs that CMS needs to address with input
from SSA in order to promote employment of beneficiaries. These
two programs work in complete isolation from one another, and the
resulting silos cause problems in many areas. One of the areas that
needs work is the Medicare Savings Program, in which Medicaid pays
all or part of the Medicare premiums and also covers the co-payments
and deductibles for beneficiaries who meet specified income and
resource limits. The effect of earned income on eligibility for
these programs is not conducive to work. In addition, the interaction
of Medicaid buy-in programs and the Medicare Modernization Act on
prescription drug coverage poses problems. These are not issues
that CMS should address without significant involvement with SSA,
since they affect return-to-work efforts of beneficiaries. Finally,
Medicare expenditures are not included when calculating individual
threshold amounts for 1619(b) extended Medicaid coverage. This practice
penalizes SSI recipients with dual eligibility in both Medicare
and Medicaid programs who are earning more than the standard state
threshold amount but who have unusually high medical expenses.
SSA should convene a task force
composed of representatives of private insurance providers, large
employers, and small business to design, implement, and evaluate
a series of demonstration activities that will assess the effectiveness
of public-private insurance partnerships in expanding access to
health care for individuals with disabilities. SSA has never
attempted to engage the business community or the insurance industry
in collaborative efforts on the issue of health care coverage. This
represents a significant missed opportunity that must be addressed.
The public and private health care systems are currently working
at cross-purposes. A blending or braiding of public and private
funds may well be more cost-effective and could possibly lead to
a more seamless and integrated health care coverage system for people
with disabilities. This task will undoubtedly be difficult, but
the consequences of having the public and private health care systems
continue to work in isolation from each other are significant.
Vocational Rehabilitation System
SSA's efforts to work collaboratively with the vocational
rehabilitation system to improve the rates of Substantial Gain Activity
(SGA)-level work for its beneficiaries have not been particularly
successful to date. The main problem seems to be the way SSA pays
for these outcomes. However, the general concept of having SSA provide
financial incentives for employment outcomes is a sound one, and
alternative payment mechanisms should be investigated and piloted
to test their effectiveness. Specific recommendations include the
following:
SSA should modify Ticket to Work
(TTW) program regulations to allow the SSA's Vocational Rehabilitation
(VR) traditional VR cost reimbursement program to carry on as a
parallel program to the Employment Network (EN) outcome or outcome-milestone
payment mechanisms. The cost reimbursement and EN payment
systems should operate as parallel programs in which both the VR
agency and the EN would receive payments for serving the same beneficiary.
This approach would facilitate VR-EN partnership in which the SVRA
could get reimbursed for its costs and then hand off the case to
an EN for follow-up, and the EN would receive the outcome payments
through the Ticket. The funding security this approach would foster
for the ENs would position them better financially to accept Tickets
from individuals who do not use VR services.
SSA should modify the TTW regulations
to ensure that an EN is able to accept Ticket assignment from a
beneficiary, refer that individual to a VR agency for needed services,
and not be required to reimburse the VR agency for those services.
TWWIIA did not specify a rigid set of requirements with regard
to the nature of agreements between ENs and VR agencies, only that
they are required. The current TTW regulations do not specify
the terms of the agreements and do not require ENs to automatically
reimburse VR agencies for services provided to beneficiaries by
the EN. However, in practice, virtually all current VR-EN agreements
require that when an EN refers a beneficiary to a VR agency for
services, it must reimburse the VR agency for the cost of services
(Kregel & Revell, 2003). This creates a tremendous disincentive
for ENs, which are struggling to find economically viable business
models under which to operate the TTW program. The fact that, under
the terms of nearly all current agreements, the monies that must
be repaid to SVRAs may constitute 25 percent to 50 percent of the
total Ticket reimbursement to the EN makes a huge difference in
an EN's ability to successfully participate in the Ticket program.
Federal Employment and Training System
With the advent of the One-Stop Career Center approach
to delivering employment and training services nationally, SSA recognized
a unique opportunity to gain assistance for its beneficiaries and
has actively pursued collaborative projects with DOLETA.
SSA should undertake an analysis
of the impact of allowing DOL One-Stop Career Centers to receive
cost reimbursement payments for successfully serving beneficiaries
under the TTW program. Beneficiaries might have access to
more choice of providers if SSA granted the same reimbursement mechanism
to One-Stop agencies that it currently reserves for the state VR
agencies. While this would be a controversial move, it might encourage
One-Stop Career Centers to take a more active role in providing
employment services and supports to individuals with disabilities.
Congress should direct SSA and DOLETA
to evaluate the impact of the Workforce Investment Act (WIA) performance
standards on beneficiary participation in WIA programs and design
and test a set of waivers that will assist beneficiaries to access
and benefit from WIA core and intensive services, as well as individual
training accounts. While SSA has been involved with special
DOL projects targeting consumers with disabilities, such as the
Disability Navigator Initiative and the Work Incentive Grants, there
has been little involvement in the regular WIA-funded core services
(including outreach, job search and placement assistance, and labor
market information) or intensive services (including comprehensive
vocational skill and/or interest assessments, development of individual
employment plans, and career counseling and career planning provided
through the One-Stop Centers). Of particular interest are the WIA-funded
training services in which participants may receive short-term occupational
skills training and/or training in basic skills. Participants use
individual training accounts to select an appropriate training program
from a qualified training provider. The problem with the WIA standard
adult services is that eligibility is very narrowly defined and
determined. Only individuals who meet the criteria for groups such
as dislocated workers or recipients of public assistance such as
Temporary Assistance for Needy Families (TANF) generally qualify.
In addition, agencies that provide the WIA-funded adult services
are held to rigorous DOL performance standards relating to number
of placements, length of employment retention, number of hours worked,
and wages earned. These performance standards inadvertently create
a disincentive to enroll people with disabilities, since they are
perceived to be less successful (or more difficult to support) in
competitive employment. SSA beneficiaries would have access to another
valuable source of employment preparation, training, and job placement
services if DOL offered WIA providers additional performance credit
for serving persons with disabilities. The WIA-funded youth services
could also become a useful source of transition and early intervention
services if the same performance credit were extended for serving
youth with disabilities as a priority population.
Congress should direct SSA and DOL
to evaluate the effect of changing unemployment insurance policies
to all the payment of benefits when combined with vocational rehabilitation
or other employment support services, instead of denying UI benefits
to individuals who are sick or injured. The UI system could
be an essential partner in the early identification of and intervention
with potential SSI/DI beneficiaries. It does not make good fiscal
sense to deny someone UI benefits if it simply hastens application
for Social Security disability benefits. Since some state UI and
VR agencies are co-located in One-Stop Career Centers created by
WIA, there should be existing mechanisms for collaboration and coordination
of this type.
Educational System
The educational system should be a critical partner
with Social Security in efforts to promote employment and economic
self-sufficiency for SSA beneficiaries. These systems have access
to current and future disability beneficiaries at a very early age
and have the resources of individualized education and transition
planning at their disposal. Unfortunately, these systems have not
been engaged by SSA on any large scale in order to advance the successful
transition from school to paid employment. The following recommendations
offer several steps that SSA should pursue.
Congress should direct SSA to expand
the current student earned income exclusion (SEIE) and the Plan
for Achieving Self-Support (PASS) to encourage involvement of SSA
beneficiaries in postsecondary education and training. The
maximum age for the SEIE should be raised to 25 from its current
level of 22. This would create an incentive for beneficiaries to
participate in postsecondary education and training programs. In
addition, the PASS program should be revised to allow beneficiaries
to set a goal of career exploration or postsecondary education as
an allowable goal under the program.
SSA should work with the Department
of Education to ensure that benefits planning and financial management
services are available to the transition-aged population.
Early intervention in the area of benefits counseling would result
in getting valuable information about the effect of earned income
on benefits and the many work incentives available for use in meeting
career goals out to students with disabilities and their families.
While the BPAO initiative has been successful to date, there remains
a problem with delivering benefits counseling to the school-age
beneficiary population. The BPAO program only can serve students
beginning with the age of 14, and benefits specialists are not trained
to meet the unique counseling needs of young students and their
families. SSA should work with ED to ensure the inclusion of benefits
counseling and financial planning as part of the IEP process and
transition planning.
Congress should consider a policy
change that would disregard all earned income and asset accumulation
limits of beneficiaries who are transitioning from secondary education
to postsecondary education or employment for at least one year after
education or training is completed. This will allow youth
to accumulate funds through scholarships, grants, and employment
that will help them acquire the education and training needed for
competitive employment without fear of losing financial and health
care supports. A one-year period after completion of education will
allow these young adults to establish themselves in their career
path and move toward economic self-sufficiency. SSA is testing higher
earned income and asset limits in its Youth Transition Demonstration
(YTD).
Employers, Business Community, and Private Insurance
Industry
SSA needs to engage the business community in its
quest to increase employment outcomes for people with disabilities
on two fronts. First, the business community is the primary source
of employment for SSA beneficiaries. SSA has a compelling interest
in encouraging businesses to hire people with disabilities. Second,
the business community is the source of many disability applicants
who acquire disability later in life. Practices of the business
community and the insurance industry that fail to return workers
with disabilities to gainful employment contribute to the progression
of disability benefits phenomenon that ultimately ends at Social
Security's doorstep.
Congress should direct SSA and the
IRS to evaluate the possible effects of a disabled worker tax credit
as a means of increasing the use of DM programs in business to prevent
progression of injured and disabled workers onto the public disability
rolls. The concept of a disabled worker tax credit, similar
to the work opportunity tax credit created in the context of welfare
reform, should be evaluated as a potential strategy for controlling
the inflation of the DI rolls. This credit could be offered to businesses
on a per worker basis whenever an ill or injured worker is returned
to employment instead of moved onto the public benefits rolls. Another
possibility is to offer companies broader tax incentives for implementing
a federally approved or certified program of disability management.
While tax incentives are certainly attractive to the business community,
they often are perceived by businesses as being bureaucratic and
involving unnecessary red tape or paperwork. Any initiative would
need to be sensitive to these concerns and would best be designed
with significant input from the business and insurance communities.
Congress should direct SSA to collaborate
with the Small Business Administration (SBA) and the Rehabilitation
Services Administration (RSA) to develop and implement an employer
outreach program targeted toward small and mid-size businesses.
While encouraging the expansion of DM programs is a useful strategy,
these programs tend to be offered primarily by large corporations,
while most Americans are employed by small to mid-sized businesses
(Drury, 1991). In 1994, the SBA published statistics showing that
firms with 100 or fewer employees employed 35 percent of all U.S.
workers. Companies with fewer than 500 workers employed more than
half of all Americans and accounted for 99 percent of all business
establishments. Interestingly enough, small firms (those with fewer
than 100 employees) are a major employer of worker's compensation
rehabilitants who cannot return to their former jobs, as well as
placements from state VR agencies and private VR programs (Drury,
1991) These statistics suggest that there might be some innovative
ways to engage small business that SSA could test through partnerships
with other federal and state agencies. In particular, collaborative
approaches between the SBA and the RSA could make small businesses
a priority for outreach efforts conducted by the state vocational
rehabilitation agencies. The focus of these outreach efforts would
be to educate small business owners on disability issues and strategies
for retaining workers by using return-to-work approaches such as
job accommodation, job modification, vocational counseling, and
case management. The state VR agencies would be uniquely qualified
to provide these services at the workplace but would need to develop
a much closer connection to local small business communities in
order for this approach to work (Drury, 1991).
SSA should examine ways to encourage
beneficiaries to establish small businesses or microenterprises
as an alternative to traditional wage employment. Not only
is self-employment identified as a priority in the President's New
Freedom Initiative but research indicates that self-employment offers
more flexibility and accommodation for an individual with a severe
disability or medical condition than working for an existing employer
(Griffin and Hammis, 2003). The PASS work incentive offers an excellent
way to set aside income and resources to capitalize a business,
but, as previously noted, this work incentive remains underutilized.
The problem could potentially be resolved by making a concerted
effort to inform not only VR agencies but also business entities
such as local Small Business Development Centers (SBDCs) and SBA
officials about the potential a PASS offers to entrepreneurs who
experience disability. Another possible approach would be to examine
why PASS plans containing a self-employment goal fail to be approved
by SSA PASS specialists. Perhaps some common areas of weakness could
be identified and steps taken to correct the problem. SSA is testing
various types of small business and microenterprise approaches as
a key part of its Work Incentives for Participants in the Florida
Freedom Initiative demonstration.
Summary
Despite concerted efforts by Congress and federal
agencies, the chronic unemployment of SSA beneficiaries remains
a vexing problem. Beneficiaries are frequently unable to access
the employment services and other supports they need to obtain employment,
despite the fact that many beneficiaries feel they are capable of
and motivated to work. As a result, many individuals feel trapped
on the disability rolls, unable to pursue economic self-sufficiency
without jeopardizing the health care and support they need. This
situation continues to strain our nation's fiscal resources.
The complex obstacles to employment faced by SSA beneficiaries
require a comprehensive set of solutions. New approaches must be
identified that emphasize beneficiary control of career planning
and the ability to access self-selected services and supports. Public
and private health care providers must develop new collaborations
and new approaches to combining coverage from multiple sources to
improve program efficiencies. SSA must continue to work with RSA
and DOL to improve implementation of the TTW program and identify
new approaches that will overcome the traditional inability of SSA
beneficiaries to benefit from services provided by the nation's
employment and training programs. Secondary and postsecondary educational
institutions must emphasize benefits counseling and financial management
training as the foundation for beneficiary self-direction and economic
self-sufficiency. Federal agencies and the business community must
realize that collaborative approaches to incorporating beneficiaries
into the workforce are needed as a way to reduce dependence on federal
benefits while simultaneously enhancing the productivity and competitiveness
of large and small businesses.
Chapter VI: Summary
of Findings and Recommendations The purpose
of this study was to conduct a comprehensive analysis that (1) examines
SSA's current efforts to implement its SSI and DI disability programs;
(2) documents philosophical, programmatic, and regulatory obstacles
that limit the ability of SSA beneficiaries to return to work; (3)
identifies evidence-based practices that promote the return to work
of working-age beneficiaries of the DI and SSI programs; and (4)
recommends the legislative, policy, and regulatory changes that
will be necessary to ensure the successful adoption and implementation
of evidence-based practices. This chapter summarizes the findings
from the entire study in relation to the four specific research
questions that guided the overall research effort and outlines a
comprehensive set of recommendations that will serve as a basis
for future program reform.
Research Question 1
What are the evidence-based practices that promote
the return to work of working-age beneficiaries of the DI and SSI
programs?
Since 1980, Congress has granted the Social Security
Administration (SSA) the authority to conduct demonstration projects
that investigate the efficacy of possible policy or programmatic
changes that may improve the ability of beneficiaries to obtain
and maintain employment. The demonstration authority provides the
agency considerable flexibility in designing and implementing research
activities, even allowing SSA to waive certain DI and Medicare program
rules to test potential changes that may enhance program administration
or lead to Trust Fund savings.
In exchange for this demonstration authority, Congress
placed several requirements on SSA's design and implementation of
demonstration programs. First, SSA demonstrations must be of adequate
scope and must be designed with sufficient methodological rigor
that the results will generalize to the entire DI population or
a specific subgroup within the entire population. Second, SSA must
inform Congress when it initiates a demonstration and must provide
regular reports throughout implementation. Third, SSA must communicate
findings and make recommendations to Congress that will translate
the results of the demonstrations into significant policy changes.
To date, SSA's demonstration authority has not resulted
in the validation of evidence-based practices that promote employment
and return to work for beneficiaries. In November 2004, the Government
Accountability Office (GAO) released a report that was critical
of the manner in which SSA had used its demonstration authority
(GAO, 2004a). GAO concluded that the current demonstration authority
provides a valuable opportunity for SSA. The agency is allowed to
waive program rules in demonstrations and has the unique advantage
of being able to fund these activities through Trust Fund monies,
not just through congressional appropriations. Even with these advantages,
GAO concluded that SSA "has yet to use it to propose or assess
major policy options that could result in saving[s] to the Trust
Fund" (GAO, 2004a, p. 24).
GAO identified four specific shortcomings in SSA's
prior demonstration efforts:
- SSA lacks a formal process for developing a long-range demonstration
agenda that will establish clear priorities for future research.
Current demonstration planning occurs with insufficient input
from internal and external stakeholders.
- SSA has not used its demonstration authority to test potential
program modifications prior to launching new program initiatives.
For example, if SSA had tested various components of the Ticket
to Work (TTW) program before launching the program nationwide,
it may have been able to identify problems and develop solutions
prior to implementation.
- SSA's design of demonstration programs has frequently lacked
sufficient methodological rigor. Prior demonstration projects
have not been of sufficient scope or conducted on a wide enough
scale to result in the validation of evidence-based practices
that could potentially form the basis of policy reform.
- SSA lacks a process to ensure that it carefully considers the
policy ramifications of demonstration project results. In addition,
the agency has done a poor job of communicating results of its
demonstrations to Congress.
A number of factors account for this lack of evidence-based
practices related to employment and return-to-work services for
SSA beneficiaries. Political pressures sometimes lead policymakers
and program administrators to rush promising but unproven practices
into the field in an attempt to address the critical needs of beneficiaries.
Changing congressional priorities have sometimes made it difficult
for SSA to conduct the methodical, long-term investigation of employment
practices necessary to determine whether a promising pilot program
will develop into an evidence-based service alternative.
In an era of increasingly tight fiscal resources,
Congress and SSA cannot afford to devote scarce funds to unproven
national programs that ultimately do not live up to initial expectations.
Access to comprehensive, scientifically valid research information
prior to committing large-scale resources to new efforts is essential
to achieving long-term program reform. Congress and SSA should resist
the temptation to rely on short-term solutions to long-standing
problems and accept the need to conduct methodologically rigorous
evaluations of clinical interventions and devote the time and resources
necessary to develop and validate additional evidence-based employment
practices that will guide policy development and service delivery
in the future.
Research Question 2
What policy changes are needed, given recent trends
in program participation and employment?
Although SSA has taken steps to improve its return-to-work
services, a more fundamental change in the agency's process and
underlying philosophy is necessary in order to make the SSA disability
program more work-oriented. SSA needs to integrate return-to-work
strategies into all relevant phases of its disability determination
process and benefits systems to enable workers with disabilities
who can return to work to do so, and reassess the root causes of
its problems. To accomplish this task, the agency must address the
contradictions inherent in the current mission and purpose of its
disability programs.
Promoting employment and return to work among SSA
beneficiaries will require SSA to make a major paradigm shift and
totally redefine both its mission and how it conducts its work on
a day-to-day basis. In order to be successful in these endeavors,
SSA will have to work in an aggressive and proactive manner to indemnify
against future risk, as opposed to simply passively processing applications
submitted by former workers with severe disabilities and then managing
their ongoing payments. Furthermore, a comprehensive return-to-work
program cannot be implemented by SSA alone. Successful efforts at
program reform will require significant collaboration and coordination
among SSA; other federal agencies, such as the Department of Labor
(DOL), Rehabilitation Services Administration (RSA), Centers for
Medicare and Medicaid Services (CMS), Housing and Urban Development
(HUD); the Small Business Association (SBA); employers; the disability
services community; and the private insurance industry. The alarming
expansion of the Social Security disability rolls cannot be viewed
as SSA's problem to solve -- it is a societal problem. It is in
the best interests of American society to slow down this relentless
progression from initial illness or injury to complete and total
disability. No one wins when millions of Americans are removed from
the productive labor force to live a life of dependency on federal
benefits.
Research Question 3
Are there proven and documented practices that work
best for some populations of people with disabilities and not others?
The overall lack of evidence-based practices in employment
and return-to-work services also applies to strategies used to meet
the employment needs of specific groups of individuals with disabilities.
Among the many vocational approaches identified in the literature
for specific groups of individuals with disabilities, few have been
adequately described and, with one exception, none have a systematic
body of rigorous research documenting improved program outcomes.
The sole example of an employment approach that has been empirically
validated with a specific population of individuals with disabilities
is the work that has been done to validate the effectiveness of
supported employment as a strategy to help mental health consumers
(i.e., individuals with psychiatric disabilities) achieve competitive
employment (Bond, 1992; Bond, Drake, Becker, and Mueser, 1999; Heyman,
Turton, and Schneider, 2002; Honey, 2000; Lehman, 1995).
A crucial influence on the conceptualization of supported
employment has been the work of Robert Drake and Deborah Becker
in the development of the Individual Placement and Support (IPS)
model (Becker and Drake, 1993, 2003). The IPS model is now regarded
as synonymous with evidence-based supported employment for individuals
with psychiatric disabilities. The following are the key principles
that define IPS (Becker and Bond, 2002; Bond, 1998, 2004a):
- Services are focused on competitive employment.
The agency providing supported employment services is committed
to competitive employment as an attainable goal for its consumers
with psychiatric disorders, devoting its resources for rehabilitation
services to this endeavor rather than to intermediate activities,
such as day treatment or sheltered work.
- Eligibility is based on consumer choice.
No one is excluded who wants to participate.
- Rapid job search. Supported employment
programs use a rapid job search approach to help consumers obtain
jobs directly, rather than providing lengthy preemployment assessment,
training, and counseling.
- Integration of rehabilitation and mental health.
The supported employment program is closely integrated with the
mental health treatment team.
- Attention is paid to consumer preferences.
Services are based on consumer preferences and choices rather
than provider judgments. Staff and consumers find individualized
job placements based on consumer preferences, strengths, and work
experiences.
- Time-unlimited and individualized support.
Follow-along supports are individualized and continue indefinitely.
- Benefits counseling is provided. Consumers
are given specific and timely guidance tailored to their unique
circumstances.
Evidence-based supported employment (i.e., the IPS
model) has been described in detail in a practice manual (Becker
and Drake, 2003) and an implementation resource kit (Becker and
Bond, 2002). A well-validated supported employment fidelity scale
has been developed (Becker, Smith, Tanzman, Drake, and Tremblay,
2001; Bond, Becker, Drake, and Vogler, 1997; Bond, Vogler, Resnick,
Evans, Drake, and Becker, 2001).
Using the most stringent requirements for level of
evidence, all the recent reviews of supported employment for clients
with psychiatric disabilities point to the conclusion that it should
be considered an evidence-based practice (Bond, 2004b; Bond, Becker,
Drake, Rapp, Meisler, Lehman, Bell and Blyler, 2001; Bond, Drake,
Mueser, and Becker, 1997; Crowther, Marshall, Bond, and Huxley,
2001; Heyman, Turton and Schneider, 2002; McLaren, 2004; Moll, Huff,
and Detwiler, 2003; Ridgway and Rapp, 1998; Twamley, Jeste, and
Lehman, 2003).
Research Question 4
Which factors ensure that documented and evidence-based
practices could be adapted/adopted by SSA and other entities that
seek to ensure the employment of people with disabilities? Which
factors prevent adaptation/adoption?
Over the past decade, SSA has devoted considerable
resources to promoting employment and return to work among DI and
SSI beneficiaries. The agency has implemented a number of new initiatives
authorized under TWWIIA, such as the Ticket to Work and Self-Sufficiency
Program; the Benefits Planning, Assistance, and Outreach program;
and the protection and advocacy program for Beneficiaries of Social
Security. It has modified program rules to provide increased work
incentives to beneficiaries, such as the expedited reinstatement
and protection from continuing disability review provisions of TWWIIA,
indexing the SGA threshold, and increasing the level of earnings
allowed during the trial work period. The agency has also launched,
or is planning to initiate, a number of demonstrations that will
test the efficacy of early intervention services, new modifications
to work incentives in the DI program, and services targeted toward
youth with disabilities.
While SSA has taken steps to improve its return-to-work
services, the agency faces a number of challenges as it implements
its reform initiative. The definition of disability in the current
SSA eligibility process is based on a 50-year-old conceptualization
of disability that is in direct conflict with the premises of more
recent federal policies and programs. The present eligibility determination
process fails to recognize the difference between the presence of
a disability and total work incapacity. It does not acknowledge
the concepts of partial disability or temporary disability. Rather
than facilitating early intervention services by making rehabilitation
services available to individuals early in the disability process,
it delays eligibility for the rehabilitation and medical services
and supports that might enable individuals to return to work and
avoid lifelong dependence on disability benefits.
SSA is a vast federal agency that implements program
rules in an attempt to ensure that millions of individuals with
disabilities receive the financial support they need to care for
their basic needs and maintain independence. However, the culture
of SSA is not geared toward providing rehabilitation services and
returning individuals to work. The complexity of the system thwarts
the efforts of many beneficiaries who would like to receive rehabilitation
services and return to work. The complexity of program rules, coupled
with the inability of the agency to accurately track and record
post-eligibility earnings, frequently penalizes beneficiaries who
attempt to enter or reenter employment.
SSA is not and should not be solely responsible for
providing all the services and supports necessary to enable beneficiaries
to enter employment or return to work. The agency has worked closely
with the Department of Education (ED), the Centers for Medicaid
and Medicare Services (CMS) of the Department of Health and Human
Services (DHHS), and the Department of Labor (DOL) to provide beneficiaries
with access to the direct employment services and indirect employment
supports necessary for employment success. While these efforts are
laudable, coordination and collaboration across multiple federal
and state agencies remain a significant challenge for the agency.
Increased efforts are necessary to ensure consistency across eligibility
criteria and program rules, thereby allowing beneficiaries to access
and benefit from all necessary services and supports. In addition,
SSA needs to expand its collaboration efforts by working more closely
with the business community and with public and private insurance
providers.
The previous chapters have identified a number of
recommendations to modify SSA disability programs to make them more
work-oriented. Each of the recommendations has been identified through
a review of all available published and unpublished literature,
considered and supported at a consensus validation conference attended
by representatives of a large number of groups, and described and
justified earlier in this report. The 38 recommendations are organized
into three categories: Beneficiary Perspective and Self-Direction,
Income Issues and Incentives, and Coordination and Collaboration
across Multiple Public and Private Systems.
Beneficiary Perspective and Self-Direction
Customer Service
(1) SSA should develop and implement a plan to improve
the architectural and programmatic accessibility of SSA field offices
and Web sites.
(2) SSA field office personnel functions, staffing
patterns, and work assignments should be redesigned to prioritize
activities that assist beneficiaries attempting to work.
(3) SSA should continue and expand its efforts to
automate processing of work reports and increase coordination of
work reporting across the SSI and DI benefit programs.
(4) SSA should significantly improve outreach efforts
to beneficiaries to inform them of the existence, advantages, and
reporting requirements of various work incentives.
Ticket to Work Program
(5) Congress should expand Ticket eligibility to include
beneficiaries whose conditions are expected to improve and who have
not had at least one continuing disability review, childhood SSI
beneficiaries who have attained age 18 but who have not had a redetermination
under the adult disability standard, and beneficiaries who have
not attained age 18. It is important to note that if Congress were
to adopt this recommendation, there would be additional costs associated
with its implementation and therefore, by Office of Management and
Budget (OMB) rules, there would be a requirement to provide an offset
to pay for the change.
(6) SSA should review and modify the TTW regulations
to ensure that Ticket assignment practices do not violate the voluntary
nature of the program and beneficiary rights to grant informed consent.
(7) SSA should design and implement a strong national
marketing program that will expand and intensify its efforts to
inform beneficiaries about the TTW and other SSA programs.
Facilitating Beneficiary Choice
(8) Congress should authorize and direct SSA, RSA,
CMS, HUD, and the DOL's Employment and Training Administration (DOLETA)
to develop and implement an integrated benefits planning and assistance
program that coordinates resources and oversight across several
agencies, enabling beneficiaries to access benefits planning services
within multiple federal systems.
(9) SSA should consider changes to the existing BPAO
initiative to improve the accuracy and quality of services provided
to individual beneficiaries.
Reducing SSA Overpayments to Beneficiaries
(10) SSA should expand its efforts to increase the
use of electronic quarterly earnings data and automated improvements
to expedite the processing of work activity and earnings that affect
eligibility and benefits.
(11) SSA should pilot the creation of centralized
work continuing disability review (CDR) processing in cadres similar
to Plan for Achieving Self-Support (PASS) and special disability
workload cadres.
(12) Congress should direct SSA to enhance its efforts
to educate beneficiaries on reporting requirements, the impact of
wages on benefits, and available work incentives.
Eliminating the Marriage Penalty
(13) Congress and SSA should undertake a complete
review of the SSI program and make program modifications that eliminate
the financial disincentive to marriage inherent in the present program.
(14) Congress should amend the current Title XVI disability
legislation to modify the manner in which 1619(b) eligibility is
applied to eligible couples.
Income Issues and Incentives
Easing the SGA Cash Cliff for DI Beneficiaries
(15) Congress should modify the current Title II disability
legislation to eliminate SGA as a post-entitlement consideration
for continued eligibility for Title II disability benefits.
(16) Congress should modify the current Title II disability
legislation to provide for a gradual reduction in DI cash benefits
based on increases in earned income.
(17) Congress should modify the current Title II disability
legislation to establish a system of continuation of program eligibility
for DI beneficiaries through the creation of a beneficiary nonpayment
status.
Reducing Restrictions on Assets for SSI Beneficiaries
(18) Congress should direct SSA to develop and test
program additions and regulatory modifications that will enable
SSI beneficiaries to accumulate assets beyond existing limits through
protected accounts and other savings programs.
(19) SSA should change current program rules and work
with other federal agencies to modify and expand the value of individual
development account (IDA) programs to SSA beneficiaries.
Decreasing the Complexity of the DI/SSI Program Rules
Governing Income and Resources
(20) Congress should direct SSA to simplify regulatory
earnings definitions and wage verification processes so they are
consistent across the SSI and DI programs.
(21) Congress should direct SSA to modify regulations
related to the treatment of earnings in the DI program by applying
the same rules currently applied in the SSI program.
Coordination and Collaboration Among Multiple Public
and Private Systems
Health Care System
(22) CMS and SSA should work together closely to modify
existing program regulations in order to uncouple Medicare and Medicaid
coverage from DI/SSI cash payments, similar to the way in which
Medicare coverage is currently provided to persons with end-stage
renal disease or to the Medicaid buy-in program.
(23) SSA, CMS, and state Medicaid agencies need to
work together to identify and eliminate the many employment disincentives
currently built into the Medicaid waiver, Medicaid buy-in, and Health
Insurance Premium Payment (HIPP) programs.
(24) SSA and CMS should work collaboratively to examine
the Medicare programs for policies that do not promote paid employment
or that encourage earlier application for DI benefits.
(25) SSA should work collaboratively with other federal
agencies to expand benefits counseling services to include the full
range of financial education and advisement services.
(26) Congress should direct SSA and CMS to conduct
a complete review of the current Medicaid and Medicare programs
to identify and correct inconsistencies between the two programs
that result in disincentives to employment for beneficiaries.
(27) Congress should direct SSA and CMS to convene
a standing task force composed of representatives of public and
private insurance providers, large employers, and small business
to design, implement, and evaluate a series of demonstration activities
that will test the effectiveness of providing a seamless, uninterrupted
public-private insurance partnership in expanding access to health
care for individuals with disabilities.
Vocational Rehabilitation System
(28) SSA should modify TTW program regulations to
allow SSA's traditional VR cost reimbursement program to carry on
as a parallel program to the Employment Network (EN) outcome or
outcome-milestone payment mechanisms.
(29) SSA should modify the TTW regulations to ensure
that an EN is able to accept Ticket assignment from a beneficiary,
refer that individual to a VR agency for needed services, and not
be required to reimburse the VR agency for those services.
Federal Employment and Training System
(30) SSA should undertake an analysis of the impact
of allowing DOL One-Stop Career Centers to receive cost reimbursement
payments for successfully serving beneficiaries under the TTW program.
(31) Congress should direct SSA and the DOLETA to
evaluate the impact of the WIA performance standards on beneficiary
participation in WIA programs, and design and test a set of waivers
that will assist beneficiaries to access and benefit from WIA core
and intensive services, as well as individual training accounts.
(32) Congress should direct SSA and DOL to evaluate
the effect of changing unemployment insurance (UI) policies to all
the payment of benefits when combined with vocational rehabilitation
or other employment support services, instead of denying UI benefits
to individuals who are sick or injured.
Educational System
(33) Congress should direct SSA to expand the current
student earned income exclusion (SEIE) and the Plan for Achieving
Self-Support (PASS) to encourage involvement of SSA beneficiaries
in postsecondary education and training.
(34) SSA should work with the Department of Education
to ensure that benefits planning and financial management services
are available to the transition-aged population.
(35) Congress should consider a policy change that
would disregard all earned income and asset accumulation limits
for beneficiaries who are transitioning from secondary education
to postsecondary education or employment for at least one year after
education or training is completed.
Employers, Business Community, and Private Insurance
Industry
(36) Congress should direct SSA and the IRS to evaluate
the possible effects of a disabled worker tax credit as a means
of increasing the use of disability management programs in business
to prevent progression of injured and disabled workers onto the
public disability rolls.
(37) Congress should direct SSA to collaborate with
the Small Business Administration (SBA) and the Rehabilitation Services
Administration (RSA) to develop and implement an employer outreach
program targeted toward small and mid-size businesses.
(38) SSA should examine ways to encourage beneficiaries
to establish small businesses or microenterprises as an alternative
to traditional wage employment.
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Sweeney, E.P. (2004). SSA's demonstration projects
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Appendix A: Methodology
Introduction
Between July 2004 and March 2005, a comprehensive
qualitative research study was conducted under the direction of
NCD that (1) examined efforts of the Social Security Administration
to implement its SSI and SSDI disability programs; (2) documented
philosophical, programmatic, and regulatory obstacles for SSA beneficiaries
to return to work; and (3) identified evidence-based practices that
promote the return to work of working-age beneficiaries. The final
outcome of the study was the compilation of recommendations for
policy changes necessary to facilitate the successful implementation
of evidence-based practices.
Research Questions
The specific research questions addressed in the study
were:
- What are the evidence-based practices that promote the return
to work of working-age beneficiaries of the DI and SSI programs?
- What policy changes are needed, given recent trends in program
participation and employment?
- Are there proven and documented practices that work best for
some populations of people with disabilities and not others?
- Which factors ensure that documented and evidence-based practices
could be adapted/adopted by SSA and other entities that seek to
ensure the employment of people with disabilities? Which factors
prevent adaption/adoption?
Implementation of the Study
A four-step approach was used to implement the study.
First, a comprehensive literature synthesis was completed to identify
all information of relevance to the proposed study. Second, 34 detailed
structured interviews were conducted with key stakeholders, including
federal SSA officials, representatives of other federal agencies,
consumer and advocacy organization representatives, service organizations,
community service providers, and business representatives. Third,
NCD and its researchers developed a preliminary list of findings,
evidence-based practices, and recommendations based on the literature
review and structured interviews through the development of seven
topic papers, and then convened a consensus building conference
that allowed individuals with disabilities, advocacy organizations,
service providers and policymakers to react to and further develop
the proposed recommendations. Fourth, was the development of the
comprehensive study report. The information which follows describes
the methodology used to implement the process used for the study.
Identification of Evidence-Based Practices
The approach to this task involved the development
and synthesis of a research database of studies related to return
to work for working-age individuals with disabilities. This database
includes studies not only of SSA disability beneficiaries, but any
individuals whose disabilities are comparable to those of beneficiaries
regardless of their SSA status. The rationale for this higher level
of inclusiveness is that it will allow identification of evidence-based
practices not only for SSI and DI beneficiaries, but also those
designed for nonbeneficiaries that may be applicable or adaptable
to the SSI and DI populations.
A thorough and comprehensive search of the existing
professional literature was conducted through online bibliographic
resources, through Social Security and other governmental resources,
World Wide Web searches, and direct communications with the research
community. Relevant studies were analyzed and recommendations that
were made were identified. This research database will be made publicly
available to encourage submissions from the field and to enhance
the validity of the effort as well as to benefit various constituencies,
particularly federal, state and local disability organizations,
policymakers and researchers.
Conducting the Literature Search
Keyword and subject index searches. The initial means
of searching for research were through databases available through
the researcher's university library system, which included the following:
(1) Databases of professional journal citations, including educational,
rehabilitation, and policy-related journals; (2) the library card
catalog; (3) card catalogs for all public universities and most
private universities in the Central Virginia area; and (4) databases
of Federal Government documents, including the GPO Monthly Catalog,
Government Information Resources, and the Government Periodicals
Index.
Table 1 provides a partial list of the educational
and social services databases available through the library system.
Keywords used to search for relevant studies included "Social
Security beneficiaries," "disabilities" and "return-to-work/employment/work."
Table 1
Databases Available Online Through the UNIVERSITY
Library System
- ArticleFirst
- Arts and Humanities Citation Index
- Directory of Electronic Journals
- Dissertation Abstracts Online
- Education Abstracts
- Education Resources Information Center
- Expanded Academic ASAP
- FirstSearch Databases
- General Science Abstracts
- Humanities Abstracts
- Lexis-Nexis Universe
- PubMed/MEDLINE
- netLibrary
- Ovid Web Gateway Databases
- PAIS: Public Affairs Information Service
- PapersFirst Proceedings Index of Conference Papers and Publications
- Project MUSE (Johns Hopkins University Press)
- PsycINFO Psychological Abstracts
- Social Sciences Abstracts
- Sociological Abstracts
- Web of Science
- WebSpirs Database
Citation searching.
An alternative means of searching for specific articles is to search
by citation. This method came into play as studies were suggested
by the project's consultants and collaborators, and by those in
the field. Citation searching involved searching by researcher names,
affiliation, publication dates, journal, or title keywords.
Obtaining copies of published research.
In order to assess a study's quality and enter it into the database,
abstract alone did not suffice and it was necessary to obtain a
hard copy or electronic copy of the complete study. For those studies
that are identified as potentially useful which are not available
through subscriptions or the university library collections, they
were obtained through either purchasing directly from the publisher,
or using interlibrary loan and journal article retrieval agreements
with other universities within Virginia.
Federally funded research and demonstrations.
Most federal agencies have one or more offices that support research
and demonstration projects through discretionary grants. As a major
part of the search effort, employment-focused research studies were
sought that related to individuals with disabilities, including
Social Security disability recipients (youth and adults) that have
been funded through these offices. Attempts were made to obtain
final reports or other research summaries.
Fugitive literature. One
of the common oversights in research synthesis is de-emphasizing
the so-called "fugitive literature." This term denotes
material that cannot be located through traditional, commonly used
sources (Rosenthal, 1994). Pursuing the fugitive literature serves
as an assurance that the literature search has been exhaustive and
that all viable studies are included. The methods used to accomplish
this objective included Web browsing, Listserv and USENET browsing,
and snowball sampling, which involved personal contacts through
research and demonstration projects, state and local educational
agencies, university programs, technical assistance providers, and
others.
Analysis of the Literature
Once a relevant study was identified, it was analyzed
for its relevancy. The purpose, methodology, and results were summarized
and recommendations that were made were identified.
Developing the Research Database
A database of research literature related to employment
outcomes for individuals with disabilities, including SSI and DI
beneficiaries was developed. This includes a summary of the purpose
of the study, methodology, results, and recommendations that were
made.
Data Management
A Microsoft Access data table was created, containing
the following fields:
- Record ID
- Primary Author
- Additional Authors (up to 7)
- Year of Publication
- Title of Work Cited
- Source
- Volume
- Pages
- Citation is from a book (yes or no)
- Book Author/Editor
- Publisher
- City, State
- Purpose
- Methodology/Sample
- Results
- Recommendations
- Work Cited is nonempirical (yes or no)
- Article Availability (URL)
In addition, a user interface was designed for data
entry. Each article's analysis came in the form of a Microsoft Word
document so that data entry could be conducted in copy/paste fashion.
If necessary, the citations were modified to meet ADA formatting
standards before entry into the database. Then, components of the
analysis were copied and pasted into the appropriate fields. Each
analysis was assigned a unique ID in the database, and the Word
filename was edited to contain that ID so that each record in the
database will be associated with its corresponding physical Word
file.
Database Development and Making
it Web Accessible. A copy of the Microsoft Access database
was put on a Web server and it was registered as a data source with
ColdFusion MX. From there, the search engine functionality was built
using ColdFusion MX as well as the integrated Verity search tool
that ships with ColdFusion MX. Once the search capability was running,
the Web-based forms were built to allow for the adding of new research
literature to the database via a Web browser, as well as the editing
of existing literature. A Web page was finally constructed to allow
users to view a listing of the research in the database, which can
be sorted on a number of fields.
User feedback. The database
was made accessible to project consultants and collaborators during
its development and they were asked to provide input into its development
to enhance quality and usefulness. This allowed users to submit
or recommend research or publications not listed to be analyzed
and added to the database, allowed users to monitor and critique
our quality assessments enhances our coding reliability; as
well as modify the database in order to enhance its functionality
and user-friendliness.
Key Stakeholder Interviews
The research method used for this part of the study
consisted of structured telephone interviews with members of eight
targeted stakeholder groups. No more than nine interviews using
the same questions was used within each of the targeted groups.
Table 2 below identifies the affiliations of the stakeholder who
participated in the interviews. A total of 55 individuals were identified
as key stakeholders by the NCD Employment Team. Of these, 34 individuals
were interviewed between October 2004 and January 2005.
Table 2
NCD Social Security Study
Interviews Completed
Key Stakeholder Affiliation Social
Security Administration Offices
Office of Program Development and Research
Office of Employment Support Programs
TWWIIA Advisory Panel
SSA Initiatives
State Partnership Initiative (SPI) Projects
Protection and Advocacy for Beneficiaries of Social Security (PABSS)
Benefits Planning, Assistance, and Outreach (BPAO) Projects
Employment Networks
Youth Transition Initiative
Early Intervention Demonstration Projects
Federal Partners
DOE Office of Special Education and Rehabilitation
Services (OSERS)
HHS Administration on Developmental Disabilities (ADD)
State and Regional Offices
State Protection & Advocacy Services
State Vocational Rehabilitation Agencies
Workforce Investment Boards
Disability Program Navigators
State WIG Grants
State MIG Grants
Governor's Committee on Employment of Persons with Disabilities
Consumer Organizations
National Council on Independent Living (NCIL)
Paralyzed Veterans of America
Speaking for Ourselves
National Association of People with AIDS
American Council of the Blind (ACB)
National Federation of the Blind (NFB)
Advocacy Organizations
Consortium for Citizens with Disabilities (CCD)
American Association of People with Disabilities (AAPD)
Association of Persons in Supported Employment (APSE)
National Association of the Deaf (NAD)
Self Help for Hard of Hearing People (SHHH)
National Organization of Social Security Claimants' Representatives
The Arc
Service Organizations
National Industries for the Blind (NIB)
Goodwill
Business Organizations
U.S. Chamber of Commerce
Potential respondents were initially contacted
by phone or email by the researchers to solicit their participation.
A script of the recruitment is attached. If the potential respondent
agreed to be interviewed, the staff person coordinating the interview
process made sure that the consent statement, a copy of the designated
questions, and a one-page description of the study was sent to them
for preview. An appointment time for the telephone interview was
then set-up.
Interviews were conducted using a three-way teleconference
that included (1) the interviewer, (2) the participant, and (3)
a note-taker. The interview began with a re-reading of the verbal
consent statement, and a verbal confirmation from the respondent
that he/she consented to be interviewed. The verbal consent statement
was sent to each respondent prior to the interview. Using the state
teleconference provider, each interview was audio recorded, and
participants were appropriately informed that they were being recorded
prior to the interview taking place.
After each interview, audio recordings and notes were
then summarized by the note taker. Interview summaries were emailed
by the interviewer to each respondent, who had the opportunity to
edit his or her responses for clarification or to remove potentially
risky statements. Only participant-edited summaries and verified
comments were made available for analysis.
Data were analyzed descriptively, reviewing the interview
summaries and notes to identify themes, commonalities, and patterns
of responses. The data were then analyzed within respondent categories
and across all respondents. These themes and patterns were then
organized and used in the development of the topic papers.
Development of Topic Papers
In December, NCD's researchers developed seven topic
papers, also referred to as "white papers," that synthesized
the findings from the evidence-based practices reviewed to date
with the findings from the interviews with the key stakeholders.
These topic papers were distributed to invited participants of the
Consensus Validation Conference that was convened in late January
in Washington, D.C. The purpose of developing the topic papers was
to present a written discussion of key issues that affect the employment
of beneficiaries so that invited participants could react to the
information and identify additional issues that should be prioritized
and included in the study report.
The topic papers were authored by the researchers,
consultants, and leading experts on the employment of people with
disabilities. The titles of the papers and their authors were:
- Evidence-Based Practices that Promote Employment
of People with Disabilities
Authors: Gary Bond, Paul Wehman, and David Wittenburg
- Lessons from the Foreign Experience: How
Some Other Countries Deal with the Current United States Barriers
to Employment of People with Disabilities
Author: Ilene Zeitzer
- SSA's Current Efforts to Implement the Ticket
to Work and Work Incentive Improvement Act
Author: John Kregel
- Post Eligibility Policies and Procedures:
Eliminating Disincentives to Employment in the SSA Benefits Program
Author: Susan O'Mara, JoAnne Malloy, and Tobey Partch-Davies
- Early Intervention and Diversion Strategies
as a Means for Stemming the Growth in Social Security Disability
Programs
Author: Lucy Miller
- Public and Private Health Coverage for Social
Security Disability Beneficiaries who Work
Authors: Toni Lee Acevedo, Omar Kahn, and Bryon MacDonald
- Beneficiary Experiences: Entitlement and
Return to Work for Social Security Disability and SSI Beneficiaries
Author: Terri Uttermohlen
Consensus Validation Conference
NCD and its researchers conducted a Consensus Validation
Conference as part of the Social Security Study on January 26, 2005
at the National Press Club in Washington, D.C. Of the 103 invited
participants, 69 individuals registered to attend the conference,
and 64 researchers, policymakers, service providers and consumers,
including former and current SSI and DI beneficiaries, attended
the one-day conference. This number does not include the NCD Council
Members, staff and the research team who were present.
Proceedings
The agenda for the conference was divided into a number
of plenary sessions followed by small group working sessions. There
were seven groups, each directly related to the seven topic papers
sent out a few days previous to the conference to the participants
assigned to each group. Assignment of participants was based on
expertise, experience and the desire to have as much diversity in
roles in each group as possible.
Each small topic paper group followed the same process
with minor modifications being made as accommodations to ensure
full participation:
- Identification of key points from the topic paper.
- Identification of findings that should have been in the topic
paper but were not.
- Clustering together the identified findings that were similar
and assigning a descriptive phrase.
- Voting by each group on the findings in each cluster by coding
according to the following color scheme:
- Red = you agree with the finding and believe that most
other individuals in your field would agree as well
- Green = you agree with a finding but do not necessarily
believe it is the consensus of your field
- Yellow = you agree with the finding but believe it has
a long way to go to becoming consensus
- Leave Blank = you do not agree with the finding
(Note: All findings were read out loud and ranking
was done verbally in the small groups for the benefit of participants
who had low vision or who were blind.)
After presentation of findings in a plenary session,
each individual participant had the opportunity to vote on the single
finding, from among all findings, that was felt to be most important.
These "consensus findings" were represented by red hearts.
Data Analysis
After the conference, all findings were listed by
topic group and categorized according to the cluster in which they
were placed. The number of specific codes awarded through team
vote by group members was recorded as well as whether a particular
finding had been prioritized through the consensus
vote done by all participants. Identification as to whether
the finding came directly from the white paper or had been added
by the topic group was identified by an asterisk (*).
All findings which received at least one consensus
vote were then grouped together according to topic group and according
to its assigned cluster. After examination of the findings, themes
began to emerge and coding was again used for grouping purposes.
Results
The themes that emerge from the analysis of the consensus
validation conference data fall into four trends:
- Definition of Disability. There was
much diversity in how the small groups identified the issue of
definition of disability. Discussion ranged from how the current
definition differs from an international perspective of work incapacity
to the presumption made by the current definition that beneficiaries
have the inability to work. No recommendations were made as to
what the definition of disability should be.
- Coordination/Collaboration Among Systems.
Increased coordination and communication across federal Agencies
for policy alignment was discussed. Also identified was the need
for SSA to increase coordination with Vocational Rehabilitation
Services and employers at all levels within the framework of the
Ticket to Work programs.
- Beneficiary Focus and Control. Discussion
focused on the need for increased individual planning and choice
with work incentives. Improved customer focus and simplification
of rules that directly affect beneficiaries were recommended.
- Income Issues and Incentives. This
area was approached in small group discussions at both the systems
and individual beneficiary levels. Recommendations were made for
specific change to individual incentives, but also recommendations
by a number of small groups were made for a comprehensive approach
to policy change that would allow for increased earnings without
the current penalties encountered by beneficiaries.
All trends but the "Definition of Disability"
have a research base as identified in one or more of the topic papers.
The strength in the number of participants who identified "Definition
of Disability" was unexpected, but is explored in the study
report.
Next Steps
NCD has taken the findings from the consensus validation
conference and triangulated them with the information obtained from
the key stakeholder interviews, the recommendations emanating from
the topic papers, and any additional findings from the continuing
literature search on evidenced based practices and has used them
in the development of the final study report.
Use of NCD Employment Team for Advice and Feedback
Throughout the study's implementation process, there
were at least monthly contacts made between the researchers and
the NCD Employment Team. The feedback received from Team members
and staff was invaluable for the implementation of the study. A
monthly conference call was held with the Employment Team, and communication
occurred with NCD staff multiple times in any given week.
It was the researcher's intent to include the Employment
Team in every step of the study's process so that Team members were
fully aware of any issues that were encountered and could provide
advice in how to address any issues that were encountered. This
proved to be especially helpful in addressing concerns that arose
from SSA during the key stakeholder interview phase of the study.
Also Team members provided names and contact information of a number
of key stakeholders who were interviewed as part of the study.
Appendix B: Results
of Literature Review to Identify Evidence-Based Practices
Topic Papers Used for Discussion at the Consensus Validation
Conference
Acevedo, T.L., O. Kahn, and B. MacDonald. (2005).
Public and private health coverage for Social Security Disability
beneficiaries who work. Richmond, VA: Virginia Commonwealth University,
NCD Social Security Study. Retrieved July 12, 2005, from www.worksupport.com/research/viewContent.cfm/510.
Bond, G.R., P. Wehman, and D. Wittenburg. (2005).
Evidence-based practices that promote employment of people with
disabilities. Richmond, VA: Virginia Commonwealth University, NCD
Social Security Study. Retrieved July 12, 2005, from www.worksupport.com/research/viewContent.cfm/505.
Kregel, J. (2005). SSA's current efforts to implement
the Ticket to Work and Work Incentive Improvement Act. Richmond,
VA: Virginia Commonwealth University, NCD Social Security Study.
Retrieved July 12, 2005, from www.worksupport.com/research/viewContent.cfm/507.
Miller, L. (2005). Early intervention and diversion
strategies as a means for stemming the growth in Social Security
disability programs. Richmond, VA: Virginia Commonwealth University,
NCD Social Security Study. Retrieved July 12, 2005, from www.worksupport.com/research/viewContent.cfm/509.
O'Mara, S., J. Malloy, and T. Partch-Davies. (2005).
Post-eligibility policies and procedures: Eliminating disincentives
to employment in the SSA benefits program. Richmond, VA: Virginia
Commonwealth University, NCD Social Security Study. Retrieved July
12, 2005, from www.worksupport.com/research/viewContent.cfm/508.
Uttermohlen, T. (2005). Beneficiary experiences: Entitlement
and return to work for Social Security Disability and SSI beneficiaries.
Richmond, VA: Virginia Commonwealth University, NCD Social Security
Study. Retrieved July 12, 2005, from www.worksupport.com/research/viewContent.cfm/511.
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Appendix C: Mission
of the National Council on Disability Overview
and purpose
The National Council on Disability (NCD) is an independent
federal agency with 15 members appointed by the President of the
United States and confirmed by the U.S. Senate. The purpose of NCD
is to promote policies, programs, practices, and procedures that
guarantee equal opportunity for all individuals with disabilities
regardless of the nature or significance of the disability and to
empower individuals with disabilities to achieve economic self-sufficiency,
independent living, and inclusion and integration into all aspects
of society.
Specific duties
The current statutory mandate of NCD includes the
following:
- Reviewing and evaluating, on a continuing basis, policies,
programs, practices, and procedures concerning individuals with
disabilities conducted or assisted by federal departments and
agencies, including programs established or assisted under the
Rehabilitation Act of 1973, as amended, or under the Developmental
Disabilities Assistance and Bill of Rights Act, as well as all
statutes and regulations pertaining to federal programs that assist
such individuals with disabilities, to assess the effectiveness
of such policies, programs, practices, procedures, statutes,
and regulations in meeting the needs of individuals with
disabilities.
- Reviewing and evaluating, on a continuing basis, new and emerging
disability policy issues affecting individuals with disabilities
in the Federal Government, at the state and local government levels,
and in the private sector, including the need for and coordination
of adult services, access to personal assistance services, school
reform efforts and the impact of such efforts on individuals with
disabilities, access to health care, and policies that act as
disincentives for individuals to seek and retain employment.
- Making recommendations to the President, Congress, the Secretary
of Education, the director of the National Institute on Disability
and Rehabilitation Research, and other officials of federal agencies
about ways to better promote equal opportunity, economic self-sufficiency,
independent living, and inclusion and integration into all aspects
of society for Americans with disabilities.
- Providing Congress, on a continuing basis, with advice, recommendations,
legislative proposals, and any additional information that NCD
or Congress deems appropriate.
- Gathering information about the implementation, effectiveness,
and impact of the Americans with Disabilities Act of 1990 (ADA)
(42 U.S.C. § 12101 et seq.).
- Advising the President, Congress, the commissioner of the Rehabilitation
Services Administration, the assistant secretary for Special Education
and Rehabilitative Services within the Department of Education,
and the director of the National Institute on Disability and Rehabilitation
Research on the development of the programs to be carried out
under the Rehabilitation Act of 1973, as amended.
- Providing advice to the commissioner of the Rehabilitation
Services Administration with respect to the policies and conduct
of the administration.
- Making recommendations to the director of the National Institute
on Disability and Rehabilitation Research on ways to improve research,
service, administration, and the collection, dissemination, and
implementation of research findings affecting people with disabilities.
- Providing advice regarding priorities for the activities of
the Interagency Disability Coordinating Council and reviewing
the recommendations of this council for legislative and administrative
changes to ensure that such recommendations are consistent with
NCD's purpose of promoting the full integration, independence,
and productivity of individuals with disabilities.
- Preparing and submitting to the President and Congress an annual
report titled National Disability Policy:
A Progress Report.
International
In 1995, NCD was designated by the Department of State
to be the U.S. government's official contact point for disability
issues. Specifically, NCD interacts with the special rapporteur
of the United Nations Commission for Social Development on disability
matters.
Consumers served and current activities
Although many government agencies deal with issues
and programs affecting people with disabilities, NCD is the only
federal agency charged with addressing, analyzing, and making recommendations
on issues of public policy that affect people with disabilities
regardless of age, disability type, perceived employment potential,
economic need, specific functional ability, veteran status, or other
individual circumstance. NCD recognizes its unique opportunity to
facilitate independent living, community integration, and employment
opportunities for people with disabilities by ensuring an informed
and coordinated approach to addressing the concerns of people with
disabilities and eliminating barriers to their active participation
in community and family life.
NCD plays a major role in developing disability policy
in America. In fact, NCD originally proposed what eventually became
ADA. NCD's present list of key issues includes improving personal
assistance services, promoting health care reform, including students
with disabilities in high-quality programs in typical neighborhood
schools, promoting equal employment and community housing opportunities,
monitoring the implementation of ADA, improving assistive technology,
and ensuring that people with disabilities who are members of diverse
cultures fully participate in society.
Statutory history
NCD was established in 1978 as an advisory board within
the Department of Education (P.L. 95-602). The Rehabilitation Act
Amendments of 1984 (P.L. 98-221) transformed NCD into an independent
agency. |