INDEPENDENT CHOICES Symposium

June 2001

TABLE OF CONTENTS--Presentations

Cash and Counseling: Consumers' Early Experience In Arkansas and New Jersey (Foster, Brown, Carlson, Phillips, Schore)

Consumer-Directed Fiscal and Supportive Intermediary Services: An Overview (Flanagan)

Consumer/Survivor Research: A Decade of Learning (Campbell)

Demonstrating Self-Determination: An Evaluation of Policy and Implementation Issues (Bradley, Taub)

Elder Preferences for Consumer Directed Community Care: Implications for Policy and Management (Sciegaj)

Independent Choices: Oregon (Huddleston)

IndependentChoices: An Experiment in Consumer-Direction (Barrett)

New Jersey's Experiences (Ditto)

Preferences For Consumer-Directed Services Among Different Consumer Groups: Cash and Counseling Demonstration and Evaluation Early Findings (Simon-Rusinowitz, Mahoney)

Self Determination (McArthur)

Self-Determination: The State of the Art in Supporting People with Development Disabilities in the U.S. (Conroy)

PRESENTATIONS

Cash and Counseling:
Consumers' Early Experience in Arkansas and New Jersey

Leslie Foster, Randall Brown, Barbara Carlson, Barbara Phillips and Jennifer Schore
Mathematica Policy Research, Inc.

Broad Questions Addressed by Evaluation

• Effects of C&C on consumers and their caregivers?
• Effects of C&C on public spending?
• Who participates in C&C?
• How was C&C implemented?

Outcomes for Consumers and Caregivers

• Consumers
  • Personal assistance services (PAS) used
  • Unmet needs and satisfaction with PAS
  • Life quality
  • Functioning and health
• Caregivers
  • Assistance they provide
  • Well-being

Evaluation Methodology: Random Assignment

• Interested consumers sign consent form
• Consumers complete baseline telephone survey
• MPR randomly assigns consumers to either
  1. C&C (treatment group), OR
  2. traditional Medicaid PAS (control group)
• Regression-adjusted comparisons of outcomes for treatment and control groups provide estimates of C&C effects

Preliminary Descriptive Analysis

• Early experience in Arkansas' Independent Choices and New Jersey's Personal Preference programs
  • Uses of cash
  • Caregivers hired and assistance received
  • Satisfaction with program and assistance
• Sample: Approximately 200 Early Treatment Group Members
• Data: Follow-Up Surveys at 4 or 6 Months and at 9 Months with Early Cohort

Summary

• Programs are Working Well, but Some Early Delays in New Jersey
• Large Majorities Hire Family Members
• Consumers Received Assistance With Wide Range of Activities
• Substantial Minorities Used Cash for Home Modifications and Equipment
• Large Majorities Use Bookkeeping Services
• Consumers Love the Program
  • Happy with care received and relationship
  • Flexibility
  • Control over who gives care and when
• Over 85 Percent Would Recommend Program to Others

[Table of Contents]

Consumer-Directed Fiscal and Supportive Intermediary Services:
An Overview

Susan A. Flanagan, MPH
EP&P Consulting, Inc.

I. Overview

• Historically, professional authority has played a dominant role in the social organization of medical care and related human services.
• Over the pay decade, the countervailing philosophies, of consumer-direction and self-determination have begun to assert themselves in the health and human services domain.
• The philosophy of consumer-direction has developed, in part, from the independent living and disability rights movements. From this philosophy has developed consumer-directed personal assistance service programs.
• The philosophy of self-determination has developed from the developmental disability arena. Self-Determination modes of financing and of delivering services emphasize a participant-driven approach and individualized budgeting.
• Consumer-directed modes of financing and delivering of support services permit the individual--as opposed to medical or social work professionals--comparatively greater choice and control over all aspects of service provision: hiring/selecting and training workers, defining their duties and work schedule, deciding when and how specific tasks or services are to be performed and discharging workers when appropriate.
• Recently, an increasing number of states have begun to apply the principles of consumer-direction to their support service delivery systems for persons with disabilities and chronic conditions of all ages.
• Although there is no single service delivery model that encompasses the entire range of consumer-directed support service programs, in general, a service can be considered consumer-directed if the person receiving the service has choice and control over: (1) identifying their service needs and developing their service plan, (2) hiring/selecting their worker(s), (3) setting the terms and conditions of work, (4) managing or purchasing services to manage the administrative responsibilities of an employer, in particular employment taxes and payroll, and (5) supervising, disciplining, and terminating their worker(s) as necessary.
• With increased individual choice and control come responsibilities, many of which are imposed by federal, state and county statutes and regulations.
• A challenge for states and local governments implementing consumer-directed support service programs is balancing individuals' desire for enhanced choice and control over their services and workers with regulatory compliance, program accountability, liability and program participants' health and safety.
• One concept that has emerged from states' experience with consumer-directed support service programs is the intermediary service organization (ISO).
• ISOs can provide an array of fiscal and supportive services to public payers, program participants and their representatives and to a limited extent, workers, in order to facilitate the delivery of consumer-directed support services.
• The type of ISO services appropriate for an individual depends on his or her ability and desire to perform the required employer tasks for his or her worker(s).
• Six ISO models have been identified in the literature (Flanagan and Gree, 1997). They vary in their corporate organizational structure, the types of services provided, administrative costs and the nature of the employer/employee relationship.
• This intensive workshop will be to: (1) provide an overview of the types of intermediary service organization (ISO) models currently being used in conjunction with consumer-directed support service programs with a focus on Supportive, Fiscal ISOs, and Agency with Choice ISOs, (2) review issues that states have had to address in implementing consumer-directed support service programs using ISO, and (3) provide "real life" operational information regarding the tasks, benefits and challenges related to operating these entities.

II. Types of Intermediary Service Organizations (ISOs) that Facilitate Individuals' Use of Consumer-Directed Support Service Programs

III. Use of ISO Models by the Level of an Individual's Ability and Desire to Manage the Employer-Related Tasks Associated with Consumer-directed Support Service Programs

IV. What are Fiscal ISOs?

• There are three models of Fiscal ISOs: (1) Fiscal Conduit, (2) Government (IRS Employer Agent) Fiscal ISO, and (3) Vendor (IRS Employer Agent) Fiscal Intermediary. In all three models, the individual is the employer of record of his or her worker(s).
• Fiscal Conduit ISO. This model is often used by state and local governments to administer consumer-directed support service programs that allow individuals to receive public funds via cash grants or vouchers and pay their workers directly. Either a government entity or a private vendor entity under contract with a government entity can serve as the Fiscal Conduit ISO. The Fiscal Conduit ISO may also: (1) invoice a government entity to obtain individuals public benefits for disbursement, (2) collect and verify workers' time sheets, and (3) generate standardized reports for the government entity with which it has a contract and program participants and their representatives when appropriate.
• Under this ISO model, individuals or their representatives are the employer of record of their workers (those not from agencies).
• Government (IRS Employer Agent) Fiscal ISO. Under this Fiscal ISO model, a state or local government entity may apply for and receive approval for the IRS (under IRS Revenue Procedure 80-4) to be an employer agent on behalf of individuals for the limited purpose of withholding, filing and depositing workers' employment taxes (e.g., FICA, FUTA/SUTA). These entities also manage state and federal income taxes if required/requested, federal advanced earned income credits, if applicable, withhold, file and deposit state employment taxes (SUTA/disability) and prepare and distribute workers' payroll checks. Fiscal ISO also may broker worker's compensation and/or group health insurance policies, collect and verify worker timesheets, process and pay non-labor related invoices, conduct criminal background checks on prospective workers, assist individuals with verifying workers' citizenship/legal alien status and generate standardized reports for the state/county program agencies, program participants and their representatives, when appropriate.
• Under this Fiscal ISO model, a government entity can perform these employer functions and ensure program accountability and tax and labor law compliance without being considered the employer of record of an individual's workers.
• The individuals/representatives are the employer of record of their workers (those not from agencies).
• Vendor (IRS Employer Agent) Fiscal ISO. Under this Fiscal ISO model, a private or public vendor entity or authority may apply for and be approved by the IRS (under IRS Revenue Procedure 70-6) to act as an employer agent on behalf of individuals for the limited purpose of withholding, filing and depositing workers' employment taxes (e.g., FICA, FUTA/SUTA). These entities also manage state and federal income taxes if required/requested, federal advanced earned income credits, if applicable, withhold, file and deposit state employment taxes (SUTA/disability) and prepare and distribute workers' payroll checks. Fiscal ISO also may broker worker's compensation and/or group health insurance policies, collect and verify worker timesheets, process and pay non-labor related invoices, conduct criminal background checks on prospective workers, assist individuals with verifying workers' citizenship/legal alien status and generate standardized reports for the state/county program agencies, program participants and their representatives, when appropriate.
• Under this Fiscal ISO model, a vendor entity can perform these employer functions and ensure program accountability and tax and labor law compliance without being considered the employer of record of an individual's workers.
• The individuals/representatives are the employer of record of their workers (those not from agencies).

V. What is a Supportive ISO?

• Supportive ISO. Under this model, a private or public vendor or authority or an individual (e.g., an independent case manager, support broker) may provide a variety of support services to individuals and their authorized representative, when applicable, and on a limited basis, to workers. Supportive services can include: conducting individuals' assessments and re-assessments; providing them with employer skills and self-advocacy training; assisting individuals/representatives with the recruitment, screening and hiring of workers including conducting criminal background checks on potential workers, assisting individuals in developing emergency/back-up service plans and accessing workers, developing and maintaining worker registries; arranging training opportunities for workers (on a limited basis); providing case management/counseling services; and monitoring service quality and individuals/representative satisfaction.
• Program participants may or may not be the employer of record when accessing services from this type of ISO model.
• This ISO model usually operates in conjunction with one of the other ISO models (Fiscal ISO) or as services incorporated into another model (e.g., Agency with Choice ISO or a combination Counseling/Fiscal ISO).

VI. What is an Agency with Choice ISO?

• Agency with Choice ISO. This ISO model may include a variety of different types of agencies (e.g., Center for Independent Living, social service agencies such as United Cerebral Palsy and Easter Seals, traditional home health agencies, Area Agencies on Aging, and organizations that are developed specifically to fulfill the role, such as Concepts of Independence in NY or Granite State Independent Living Foundation (GSILF) in NH) that provide support services to individuals in a consumer-directed manner. The agency is the employer of record of the worker while the individual and/or his or her representative is considered the managing employer of the worker. Duties of an Agency with Choice may include: invoicing the state/county for public funds, processing employment documents, conducting criminal background and reference checks, managing all aspects of payroll, providing a variety of support services as described in the Supportive ISO description earlier, providing training for workers and monitoring workers' performance in conjunction with the individual and his or her representative. Individuals and their representatives are often permitted to recruit their workers and refer them to the ISO for processing and discharge them when necessary. Some Agency with Choice ISOs (e.g., Concepts for Independence in NYC and GSILF in NH) allow individuals to train their workers, supervise and evaluate all aspects of their activities and terminate them when necessary.
• The services provided and level of consumer-direction afforded to individuals and representatives under the Agency with Choice ISO model can vary significantly depending on the needs of individuals and their representatives, program design, the type of agency involved, and its geographic location (rural vs urban).

VII. What is Spectrum ISO?

• Spectrum ISO. This is an operational model where a variety of fiscal and supportive intermediary services are made available to individuals and their representatives under one umbrella ISO. The ISO may choose to provide all of the fiscal and supportive services itself or it may subcontract with other entities to provide some of the services. The individual or representative can choose whether or not to be the employer of record of his or her worker depending on the type of intermediary services they select. This ISO model provides a seamless way for a state/county to provide services that best meet an individual's needs throughout his or her life while enhancing the individual's choice and control.

VIII. ISO Models Operationalized as a Spectrum ISO

IX. What Issues Have States Had to Address In Implementing Consumer-directed Support Service Programs Using ISOs?

• States have had to address a number of issues in implementing consumer-directed support service programs using Intermediary Service Organizations (ISOs). These include:
  • Determining the size, configuration and characteristics of the target service population
  • Selecting the appropriate ISO model(s) for the targeted service population:
    • individuals have varying levels of ability (e.g., cognition) and desire to perform the required employer tasks.
  • Determining individuals' and representatives' ability and desire to manage employer-related tasks:
    • Some consumer-directed support service programs provide skills training to individuals/representatives to assist them in participating in the program, and
    • Some consumer-directed support service programs assess individuals' competency in performing the required tasks in order to certify them to participate under certain ISOs (e.g., Fiscal Conduit).
  • Defining the role and responsibilities of individuals' representatives in consumer-directed support service programs that use ISOs:
    • a relative versus non-related representative,
    • a representative who is a primary member of the individual's Network of Support versus someone who interacts with the individual on an infrequent basis (e.g., lawyer, legal guardian or person with durable power of attorney), and
    • the role the representative is willing to play (e.g., be the employer of record of the individual's worker(s)).
  • Determining the optimal plan for initiating the system (e.g., pilots, phase-in for newly eligible individuals, geographic locations, etc.)
  • Defining the role and responsibilities of the ISO(s) and the type of services it will provide:
    • Clearly defining the roles and responsibilities of each type of ISO used, the program agency, the individual and his or her representative and workers and identifying the services to be provided by each ISO type is key for effective program design and implementation.
    • Identifying and resolving any potential areas where there may be conflicts of interest.
  • Establishing the budget levels that will be available to the individual for services through the ISO and resolving issues relating to potential surpluses and deficits in individuals' accounts.
  • Identifying federal requirements (e.g., labor, tax, insurance) for Fiscal ISOs:
    • Requesting approval to be an IRS Employer Agent and filing the IRS Form 2678 (Government vs Vendor Fiscal ISO) on behalf of individuals/representatives,
    • Filing IRS Forms SS-4 and obtaining a federal employer identification number (EINs) for the entity to be the Fiscal ISO (Government and Vendor Fiscal ISO) and for each individual a Vendor Fiscal ISO represents,
    • Minimum wage and overtime rules per the federal Fair-Labor Standards Act for Domestic Employees
      • Domestic service worker
      • Companionship exemption
      • Live-in help exemption
      • Night help provision
      • Recent DoL proposal to amend the provisions of the Companionship Exemption
    • Federal income tax withholding (optional for domestic employees),
    • Social Security Domestic Reform Amendments (SSDERA) of 1994
      • Filing IRS Forms 940/941 quarterly vs Schedule H annually,
      • Social Security and Medicare withholding (FICA),
      • Federal Unemployment Tax withholding (FUTA),
    • Identifying federal requirements (labor, tax, insurance) for Fiscal ISOs (continued):
      • Depositing rules,
      • Preparation of the IRS Forms W-2 and W-3,
      • Refunding the employer and employee for withheld employment taxes (e.g., FICA) when the worker does not earn the minimum gross wage amount to pay federal employment taxes in a calendar year (i.e., $1,300 in CY 2001 for FICA),
      • Federal Advanced Earned Income Credit, and
      • INS Verification of Citizenship and Legal Alien Status.
    • Identifying local and state-specific requirements (e.g., labor, tax, insurance, worker training and nurse practice act) for Fiscal ISOs:
      • Some states' Departments of Labor do not recognize the companionship and live-in help exemptions,
      • State income tax withholding, filing and depositing may be required even though federal income tax is not,
      • State unemployment tax (SUTA) laws related to withholding, filing and depositing vary by state,
      • Worker's compensation law varies by state,
      • Five states have disability insurance laws (CA, HI, NJ, NY and RI),
      • Some states require that criminal background checks be performed for all persons providing supportive services in the home,
      • Some states have a basic training requirement for all non-licensed personal care workers and may require their activities to be overseen by a health care professional,
      • State nurse practice acts vary by state and can have a significant effect on what a worker may or may not do for an individual in the home, and
      • Some states and counties have specific contracting requirements for service providers.
    • Recruiting entities to bid to be an ISO(s):
      • Currently, ISOs are a new and broadly defined niche market; with a small provider pool that varies significantly in vendors' knowledge of and experience with the required tasks,
      • State and county RFP processes represent a significant amount of time and effort, and
      • Some states have required ISOs to provide a broad range of services and, at times, these requirements can deter vendors from bidding, limiting the selection pool.
    • Selecting an ISO(s) vendor/provider and monitoring its performance:
      • An ideal ISO provider is one that has the required skills and experience and is committed to the philosophy of consumer-direction,
      • States continue to analyze the benefits of having one statewide ISO or a number of regional ISOs. Decisions reflect a number of trade-offs, and
      • Development of clear and concise contracts with measurable performance standards and an effective monitoring system is key to successfully purchasing services from an ISO. States/counties must be able to terminate an ISO contract without undue service interruption for individuals when poor performance occurs.
    • States vary in how they pay ISOs (e.g., total budget amount versus price per transaction performed).
    • States vary on how they operationalize a Fiscal ISO (e.g., issue state contract as adjunct to State's fiscal agent vs Medicaid provider).
    • States vary in whether and how they apply cost-sharing provisions to program participants to cover some/all of the cost of ISO services rendered.
    • States that choose to be the Government (IRS Employer Agent) Fiscal ISO:
      • Find that incorporating the payroll function for workers into the state payroll function extremely problematic; running separate but parallel systems has been found to be more successful,
      • Find that identifying and tracking expenses related to performing the Fiscal ISO function is a challenge, and
      • Find it a challenge to achieve significant cost efficiencies.
    • Claiming federal matching funds for the ISO function:
      • DHHS/HCFA is in the process of finalizing how ISO expenses will be treated for the purpose of claiming FFP.
    • HCFA's Medicaid provider agreement requirement:
      • HCFA requires that Medicaid agencies execute a Medicaid provider agreement with every provider and vendor that receives Medicaid funds,
      • A provider agreement can be brief (1-2 pps). To date, HCFA is in the process of determining what the key components should be. However, the agreement should include an assurance/statement that the worker is capable of performing the required tasks.
    • Identifying and enforcing the criteria that agencies must meet to be an Agency with Choice ISO.
    • Availability of benefits for workers associated with Agency with Choice ISOs.
    • Designing Spectrum ISOs that have the appropriate "fire walls" to eliminate possible conflicts of interest.
    • Addressing individual/representative noncompliance:
      • The majority of support service workers are employees of someone. Rarely are they independent contractors. This can be verified by filing an IRS Form SS-8 to request a ruling from the IRS for a particular worker.
      • The liability for individual/representative non-compliance with filing and paying federal and state employment taxes and insurances rests with the individual/representative. However, taxing authorities (particularly state unemployment) may look to the state when an individual can not pay the back taxes due, since the state is the original source of the public funds. As a result, compliance is important to reduce state and individual liability.
      • In the case of the RWJ Cash and Counseling Demonstration Projects, an individual/representative who is unsuccessful at managing his or her grant funds directly (using the Fiscal Conduit option) may use the Vendor Fiscal ISO option rather than leave the consumer-directed support service program completely.
    • Overall, implementing ISOs represent a significant commitment of time and effort for state program administrators and the entities who wish to operate as ISOs.

[Table of Contents]

Consumer/Survivor Research:
A Decade of Learning

Jean Campbell, Ph.D.
Missouri Institute of Mental Health

Research ought to and can enhance consumer choice, power, and knowledge*

*From Consumer/Survivor Mental Health Research & Policy Work Group (1993)

Integrating Diverse Cultures into the Conduct of Research

The failure to include consumers and other culturally diverse groups within services research may

• compromise research findings
• hinder the ability of service providers and policy-makers to understand consumer needs.

Nothing About Me, Without Me

• Adopting the slogan "Nothing about me, without me," mental health consumers and people of color have moved rapidly to be involved in the design and implementation of mental health services research and evaluation.
• The growth and acceptance of such partnerships show the potential for progress when different cultures work together in relationships of mutuality and respect.
• However, the inclusion of diverse groups within the conduct of research has presented interesting challenges that "expert-driven" models of research have proven inadequate to address.
• In particular, the empowerment of mental health consumers in the administration, design, implementation, and analysis activities has necessitated an on-going dialogue between consumers, consumer researchers, and non-consumer researchers to reach common ground regarding issues of
  • authority,
  • expertise,
  • and language.

What Divides Us

• It is important to remember that mental health programs, including those that are consumer-operated, function within a political system in which data are often exercised in struggles for influence.
• There is no common language or experiences that would naturally bring different constituencies together.
• Values and goals that arise from culturally dissimilar experiences, tend to separate people and polarize discussion.

Bridging Differences

Bridging differences between people on a personal level needs to be supported through group activities that promote respect, understanding, and appreciation of the difficulties that collaboration presents.

Towards a Consumer/Survivor Research Agenda
The Well-Being Project: Mental Health Clients Speak for Themselves
(1986-1989)

In 1979 Prager and Tanaka reported to the Ohio Department of Mental Health on the results of involving mental health consumers in evaluation. They concluded: "Representing the consumer's perspective on the meaning of mental illness and the correlates of 'getting better,' the process of client involvement in evaluation design and implementation is not only realistic and feasible; it is, we feel, a professional necessity whose time is overdue."

A Landmark Study

• Funded by the California Department of Mental Health Office of Prevention
• First consumer research project: Conducted by the California Network of Mental Health Clients
  • Jean Campbell, Principal Investigator
  • Ron Schraiber, Co-Investigator

Research Question

What promotes or deters the well-being of adults with severe and persistent mental illness in California?

Study Design: Developed, Administered and Analyzed by Mental Health Consumers

• State-wide Survey
• Qualitative and Quantitative Methods
  • focus groups to develop items
  • open-ended questions included
  • in-depth interviews
  • multiple choice, likert scaled items
• Triangulation:
  • clients (N=331)
  • family members (N=53)
  • mental health professionals (N=150)
• Convenient sample
• Consumer surveyors
  • face-to-face interviews
  • self-administered interviews (mail)
  • group interviews

Discovering the Consumer Perspective

Asking New Questions

• negative outcomes identified
• self-management skills revealed
• importance of personhood established
• effects of prejudice and discrimination quantified
• incongruity of values, perspective, and identified needs between consumers, family members, and mental health professionals found

Findings

• 40% of mental health clients surveyed felt that "all" or "most of the time" people treated them differently when they found out they have received mental health services.
  • like they are violent (16%)
  • like a child (21%)
  • like they don't know what is in their own best interest (31%)
  • like they are incapable of caring for children (20%)
  • like they are incapable of holding a job (33%)
• More than half of the clients surveyed indicated that they "always" or "most of the time" recognize signs or symptoms of psychiatric problems and that they can take care of these problems before they become severe.
• 48% indicated that they have avoided treatment due to fear of involuntary commitment.
• 30% reported that they had "little" or "no" control over the kind of mental health services they receive.

Peer Support Outcomes Protocol
Development of an Evaluation Protocol for Community-Based Peer Support Programs
(1996-2001)

• Consumer-operated peer support programs emerged in the 1980s as an alternative to traditional mental health services.
• To survive in an era of evidence-based funding, peer support programs need to measure:
  • cost,
  • effectiveness,
  • quality,
  • utilization
  • and appropriateness of the services they provide.

Purpose of the POPP

The Peer Support Outcomes Protocol Project developed, field-tested, and will soon distribute an evaluation protocol that measures outcomes and satisfaction of community-based peer support programs that are operated by mental health consumers/survivors.

Consumer-Developed Projects

• Protocol developed and tested by the Program in Consumer Studies and Training at the Missouri Institute of Mental Health in St. Louis.
• Funded by the National Research and Training Center on Psychiatric Disability at the University of Illinois-Chicago.

Outcome Domains

Specific outcome domains organized into individual modules:

• Demographics
• Employment
• Social Support
• Well-Being (Recovery, Empowerment & Personhood)
• Crime/Violence
• Services
• Housing/Community Life
• Quality of Life
• Program Satisfaction
• Hospitalizations

Use of the POPP

• Assist the consumer self-help field to assess program outcomes
• Present service outcomes to public funding authorities and manage-care organizations
• Help consumers improve the organization and delivery of peer support programs

Phase One (1996-1997)

• National Survey of Data Needs of Peer Support Programs (N=30)
• Sorting and ranking of survey items from review of consumer literature and instruments
• Instrument development
• IRB approval

Phase Two (1997-1998)

• Protocol Field-testing
• Instrument review and refinement
  • organization
  • clarity of item wording
  • respondent burden
  • ease of administration
  • consumer sensitivity

Phase Three (1998-2000)

• Development of Interviewer Training Manual
• Development of Q-by-Q
• Psychometric Testing (test N=150; retest=48)
  • reliability
  • validity

Phase Four (2000-2001)

• Tool Kit Development
• Knowledge Exchange
• Plans for APS (application program services)

Consumer-Operated Service Program (COSP)
Multi-Site Research Initiative
(1998-2002)

Self-Help Research

• Numerous research studies show that participation in self-help groups can help people improve the quality of their lives significantly.
• Studies show that support groups can reduce the need for medical care and hospitalization.

Consumer Self-Help Research

• Found a decline in both symptoms and concomitant psychiatric treatment as a result of participation in consumer-operated services (Galanter, 1988).
• Positive changes in perception of self, social functioning, decision-making, and symptomatology linked to participation in consumer-operated services (Carpinello et al., 1992).

Consumer-Operated Service Program Multi-site Research

The Consumer-Operated Service Program (COSP) Multi-site Research Initiative is a federally-funded national effort to discover to what extent consumer-operated programs as an adjunct to traditional mental health services are effective in improving the outcomes of adults with serious mental illness.

Features of COSP

• At $20 million, COSP is one of the most significantly funded cooperative agreement in the current CMHS budget
• Seven study sites located throughout the U.S. and a Coordinating Center at the Program for Consumer Studies and Training (MIMH)
• Over 1850 participants recruited to date
• Four years of research supported

Participating Study Sites

• Connecticut
• Florida
• Illinois
• Maine
• Missouri
• Pennsylvania
• Tennessee

What is a COSP?

A consumer-operated service is administratively controlled and operated by consumers and emphasizes self-help as its operational approach

Types of Consumer-Operated Services

• Drop-in Centers
• Educational & Advocacy Training Programs
• Peer or Mutual Support Services

Target Population

Study participants are defined as persons age 18 and over who currently or at any time over the past year have had a diagnosable mental, behavioral, or emotional disorder of sufficient duration to meet diagnostic criteria specified within the DSM-IV that has resulted in functional impairment which substantially interferes with or limits one or more major life activities.

COSP Big Six Study Outcomes

• Employment
• Empowerment
• Housing
• Service Satisfaction
• Social Inclusion
• Costs

Research Design

• Rigorous Methodology
  • Multi-site Design
  • Random Assignment
  • Experimental
    • Intervention: Consumer-Operated Program + Traditional Mental Health Services
    • Control: Traditional Mental Health Services Only
• Logic Model
• Common Protocol
• Data Collection: Baseline, 4, 8, 12 months
• Fidelity/Implementation Assessments, Site Visits, Common Ingredients

Key Operational Values

• Consumer Involvement
• Consumer Education
• Extensive Technical Assistance
• Electronic and Interactive Communications
• Collaboration
• Cultural Competency

Consumer Partnership

• SC Consumer Representatives
• Consumer Advisory Panel
• Site Consumer Advisory Boards
• Consumer Researchers
• Research Training
  • Research Glossary
  • Workshops
  • Technical Assistance

Building Consumer Trust

• Full access to project information
• Supportive communication infrastructure
• Consensus decision-making
• Telling our stories
• Use of the language "we," "our" and "us"

A Learning Community

Learning is the core objective and this should guide all decision-making.
Mike English, CMHS

Visit our website

One of the hallmarks of the COSP is the effort made to use technology to facilitate work and disseminate information.

http://www.cstprogram.org

What Is Necessary

In order to accommodate the diverse cultures that are now part of the research environment, it is necessary to pause and encourage critical discourse, and to incubate new relationships and ideas as participatory processes are established.

Looking Within

Consumer/survivor research has offered the opportunity to consumers and professionals to look within, and to "research" in a literal sense the terrain of a priori assumptions about how research should be conducted and by whom.

The Need for Rigor

Scientific rigor in methods and practices must be maintained since the weight of disbelief in public policy will surely demand that researchers push harder for clarity in research designs and data quality.

Conclusion

Ultimately, consumer participation in research will test the proposition that the integration of diverse cultures into the conduct of research ought to and can enhance scientific knowledge that is useful and meaningful for all participant groups.

[Table of Contents]

Demonstrating Self-Determination:
An Evaluation of Policy and Implementation Issues

Valerie Bradley and Sarah Taub
Human Services Research Institute

Basics of Self-Determination

• People decide what they want
• There is support to make decisions
• There are real options to choose from
• The process is simple and person-centered
• With control comes responsibility
• An approach, not a model, not a program

Antecedents Include...

• Family support programs,
• Personal assistance programs
• Employment voucher innovations
• Cash and counseling programs

It is About Changing Systems...

• Shifting authority for decision making to the individual.
• Changing the way supports are funded to give people direct control over dollars.
• Changing the role of service providers, case managers and support staff.
• Putting the person into the center of the relationship between the state and provider organization.

Purpose of the Assessment

• Demonstration projects in 19 states awarded grants by RWJF to the tune of $5M
• Common elements and strategies including:
  • individually controlled budgets
  • supported planning processes
  • administration changes to make it work
• HSRI examined impact of demonstrations over past three years

Guiding Questions

• Did the projects meet their goals?
• What actions did the projects take?
• What obstacles or constraints were encountered?
• What were the results of the actions taken?
• What national policy issues must be addressed?

Information Collected

• System-level analysis based on logic model
  • State and local context (mediating variables)
  • Actions taken and new structures put into place (independent variables)
  • Outcomes for participants and for the system (dependent variables)
• Financial management study of selected states

Year Two Assessment Focus

• Actions taken to engage self-advocates in the change process and the roles played by self-advocates nationally
• Paths taken to resolve operational and funding riddles
• Outcomes associated with systems change and the number of people supported
• The extent to which the Demonstrations move beyond a limited "pilot status"
• National policy implications

Financial Management Study

• Looked at demonstration states using HCBS Waiver funds (KS, MN, MD, MI, UT, VT, WI)
• Purpose: to compare traditional methods of financing with consumer-managed arrangements
• Document how states are doing this, what works well, and what the challenges are

Components of Financial Management

• Fund allocation and authorization of individual spending amounts--how funds are distributed by states to individuals, equitably and in accordance with formal rules
• Rate/price setting--processes involved in establishing the amounts to be paid to providers, consumers, and families for various supports
• Billing and payment--how invoices are prepared and submitted to payers; how payments are made, monitored, and kept within authorized limits
• Employee administration--administrative tasks required of employers
• Management information systems--automated systems that support financial and program operations
• Resource requirements--are the workloads increasing, decreasing, or staying the same?

What changes are happening?

• Funds are flowing through a mediating entity, not directly to consumers
• Shift from retrospective payments to prospective rates or "ranges" of costs
• Gradual movement away from advance payments and fixed contracts toward "open contracts"

Workload/Resource Issues

• Formal risk reserves are not being established--savings immediately applied to urgent needs
• Service coordinator workloads are increasing
• Shift in employee administration responsibilities from providers to fiscal intermediaries
• MIS needs increased--some projects have met these demands with automated systems but others still doing budgets by hand (uneven across states)
• "Start-up" workloads are high (for service coordinators, administrators, financial managers, etc.)
• Use of committees for budget review and authorization

What challenges lie ahead?

• Making waiver funds work for self-directed and/or self-managed supports
• Standardizing automated accounting and information systems within states (particularly in county-based states)
• Further defining and establishing service coordinator roles and responsibilities
• Expanding use of fiscal intermediaries with focus on consumer control

Points of Tension

• How do we set personal budgets?
• Who does the "broker" really work for?
• Do brokers end up with more (not less) authority?
• What about existing case managers?
• Do we really need a "fiscal intermediary"?
• For adults with disabilities, is this a person or family driven approach?
• Where does his leave traditional providers?
• Won't this cost more, not less?
• How do we assure safety and well-being?
• Can self-determination exist when another speaks or "stands in" for the person?
• Have we made the process of self-determination too detailed with the wrong priorities?
• How do we define the idea of want versus need in terms of developing a budget?
• How do we ensure equity?

Implications for Further Reform

• Support advocacy (family support councils, self-advocacy) and create a training network
• Build on some "ripe providers"
• Explore new service configurations
• Build capacity of direct support staff
• Encourage competition
• Build community capacity
• Give disenfranchised communities power over funding (also need competent brokers)
• Communication/language is key
• Information should go both ways
• Have to support people to be present
• Create a forum to discuss issues between families and individuals
• Consider pooling funds in--especially in disadvantaged/diverse communities

Focus on Self-Advocates

• We met with two self-advocates from seven states in Baltimore in October (MI, OR, MD, WI, MA, VT, UT)
• We asked about self-determination in their state and what could be done to assure that self-advocates were involved in setting policy.

Self-Advocates Said...

• That Self Determination means that...
  • I am a person like all people: My life is my own.
  • I speak for myself... "Speak Up" "Stick up for myself".
  • I make my own choices
  • I am the boss of my own life.
  • I make my decisions in my own life.
  • I do for myself... and not depend on others so much.
  • I am a person like all people: My life is my own.
• There is an awakening about self determination...
• Self advocates are participating on boards, committees and task forces locally and at the state level.
• Self advocates are becoming issues based and finding a voice...
• States are becoming more flexible in how money is spent
• There are problems with the doing.
• People don't know what self determination is.
• Caseworkers don't allow people to make their own decisions.
• Agencies say they believe in self-determination but then don't want to give up the money (or the power)
• Agencies don't want to get us the supports we want
• People promote self determination but there is an expectation of failure. Agencies "set things up" for it to fail by making it too hard to do.
• Professionals or staff not talking directly to us... talking to others instead of us.
• We need to define self-determination...
• We know the principles but people don't get it...
• It's problems with the doing that trips people up

Need and Opportunity

"A service system for [people with disabilities] and others in need of support will have to be a system in constant change. It has to be continuously developed, if the 'customers' are not to be left behind and to become hostages of an outdated way of doing things."
Alfred Dam (undated), Denmark

[Table of Contents]

Elder Preferences for Consumer Directed Community Care:
Implications for Policy and Management

Mark Sciegaj, PhD, MPH
Brandeis University
A project funded by the Robert Wood Johnson Foundation

Why This Project

• Importance of providing elders with opportunities to make meaningful choices.
• Little empirical data on:
  • The extent of elder desire to participate in the management and supervision of services
  • How decisions/needs might vary by race/ethnicity or gender

Project Objectives

• Develop and test measures of elder preferences for consumer direction
  • Service Control Scale
  • Worker Control Scale
  • Decision Control Scale
  • Desire for Information Scale
• Explore possible sources of variation
  • Health/functional status scales
  • Service satisfaction scales
  • General locus of control scale
  • Availability of informal supports
  • Age
  • Gender
  • Race/ethnicity

Project Methods

• Survey Development/Translation
• Elder Recruitment
• Interviewed 731 elders currently receiving care
  • 200 Chinese
  • 200 African American
  • 131 Latino
  • 200 White (Western European)

New Approach 1: Cash & Counseling Model

In this approach, you will receive a monthly cash payment, along with some information, training, and advice to help you plan and manage your own care services. In this approach you can also get advice and training from a counselor to learn how to locate, hire, train, schedule, and manage your worker. If you choose, you can also learn how to fill out tax forms for the worker and perform other duties of being an employer. Or, you may have an expert fill out tax forms and do the payment part of the job for you.

New Approach 2: Social HMO Model

In this approach, the agency gives you a set budget based on your needs. Together with the agency you decide what services and what schedule you want. In this approach, the agency would then take the responsibility for finding and purchasing the services with you.

New Approach 3: Traditional Care Management Model

After speaking with you, the agency would decide what services and schedule you will get. In this approach, the agency would take the responsibility for choosing, finding and purchasing the services you need.

Implications for Policy and Practice I

• Heterogeneity within racial/ethnic elder groups
  • Programs and services should not make assumptions based on racial/ethnic group membership
• Distributing risks for care maintenance and responsibilities
  • Programs and services should be flexible in terms of how they structure care management approaches

Implications for Policy and Practice II

• Closing the gap between elder preferences and professional judgments
  • It is possible for care managers to solicit valid consumer perspectives on care preferences
• Service Quality and Consumer Satisfaction
  • Addressing consumer preferences may have important and positive implications for quality and satisfaction

[Table of Contents]

Independent Choices:
Oregon

Julia Huddleston
Oregon Department of Human Services, Senior and Disabled Services Division

What is Independent Choices?

• Financially eligible for waivered services (300% of SSI standard)
• At risk of nursing facility placement
• Live in 3 count cachement area
• Demonstrated stability

Consumers arrange for care and services

Consumers manage

• The care and services purchased
• The employees providing the care
• The payroll for care providers
• The budget for services purchased

Medicaid money is paid directly to consumer

• Prospective payment
• Consumer must meet all obligations of being an employer

Project required Section 1115 waiver

• Waiver effective May 1, 2001

Cognitively impaired consumers can participate with surrogate decision makers

Consumers can employ family members including spouses as caregivers or service providers

Consumers self-select into the program

Different populations

• Younger adults--original interest
• Elderly--as waiver process went on, more "younger old" became interested
  • In 1997, project enrollment estimated as 70% younger disabled/30% elderly
  • In 2001, enrollment estimated as 60% younger disabled/40% elderly

Surrogate decision makers

Payroll and tax preparation services

• Consumers who must use payroll service
• Consumers who choose to use the payroll service at their own cost
• Pilot site differences
  • How far will the hourly wage go?
  • Cash amount based on current hourly wage
    • "$8.12 an hour is pretty good money around here."
    • Oh, clients are going to have to pay at least $11 or $12 an hour."
  • Will more family members be employed in rural areas?

Employing spouses as caregivers

• Who will?
• Why?

[Table of Contents]

IndependentChoices:
An Experiment in Consumer-Direction

Sandra Barrett
Project Administrator, IndependentChoices

The Choice

An Opportunity to Exchange Agency Personal Care Services for A Monthly Cash Allowance

The Social Marketing

• Open Enrollment
• Direct Mail
  • Letters from the governor
  • Letters to participants requesting referrals
  • Notes with copies of news clippings
  • Letters from participants with information about their experience
• Public Service Announcements
  • Television
  • Radio
• News Releases

The Players

• 18 Years Old or Older
  • 71% Age 65 or Older
  • 50% White/25% Black/25% Other
  • 62% Female
  • 75% Live in Rural Area
• Receiving Medicaid
• Need Personal Care
  • New to Continuing Ratio is 33%
• Willing to Participate
• Able to Make Responsible Care Decisions or Have a Representative Decision-maker
  • 43% Use a Representative

Closing the Deal

• Request Information
• Enter into Database
• Telephone Contact by Enrollment Staff
• Enrollment Home Visit
• Completed Signed Consent Form

Show Me the Money!

• Allowance
  • Based on Personal Assistance Needs
  • Approximately $8.00 per hour
  • Average Allowance is $375.00 a month
• Uses of Cash
  • To meet Personal Care Needs
    • Hire Personal Care Assistant
    • Purchase Items and Services Related to Personal Care

The Pay Off
Attractive Program Features

• 82% of the Allowance is used to hire a PSA
  • Family Member
  • Friend/Neighbor
• 16% of the Allowance is used to Purchase Items Traditionally Unavailable Through Medicaid
  • Personal Care Items; Assistive Devices; Health and Safety Items
  • 2% is Saved

The Supporting Cast

• Counseling
  • Training
  • Reassessments
  • Support Resource
    • Develop Cash Plan/Answer Questions
• Bookkeeping
  • Accept Cash Allowance
  • Disperse Cash According to Plan
  • Serve as Fiscal Agent
    • Maintain Employee Files
    • Pay Payroll
    • Withhold/Pay Taxes

The Observations

• Participants and family members express a high level of satisfaction with this program.
• 100% of participants are satisfied with the attendant hired.
• 80% are satisfied with their lives.
• 93% would recommend the program to others.
• 3 out of 4 are age 65 or older.
• Most participants have chronic illnesses.
• 98% know the person being hired as an attendant.
• 95% are pleased with the attendant they have hired.
• No one states that their life is worse since enrolling in IndependentChoices.

The Verdict

• Consumer Direction Works
• Consumer Direction is Not For Everyone
• This Model Will Not Replace the Traditional Model
• Respect for Preferences Should Be a Major Consideration in Program Design and Training

IndependentChoices

Debby Ellis, Program Manager
Arkansas Division of Aging and Adult Services, P.O. Box 1437, Slot 1412, Little Rock, AR 72203
Tel: 501-682-2441, E-mail: debby.ellis@mail.state.ar.us, Web site: www.independentchoices.com

[Table of Contents]

New Jersey's Experiences

William Ditto
Executive Director, New Jersey Office on Disability Services

New Jersey's Reasons for Experimenting with Cash & Counseling...

• Demographics
  • Labor shortages now (& tomorrow)
• Dissatisfaction
  • Consumer complaints and issues
• Empowerment of Consumers
  • Increase of Personal Responsibility
• Economics
  • Prudent Purchasing

Personal Preference: The New Jersey Cash & Counseling Demonstration

• Three Major Components:
  • Marketing & Enrollment
  • Fiscal Intermediary Service Organization
  • Independent Contracted Counseling Agencies

• The Process of Enrollment
  • Consumer Data Form (PCA Agency)
  • Verification (State Program Office)
  • Letter/Booklet/Telephone Call
  • Home Visit/Telephone Interview
  • Baseline Interview
  • Lottery

• Show Me The Money
  • Range of Monthly Cash Grants:
    • $282 (5 Hrs/Week) to $2,262 (40 Hrs/Week)
  • Average Monthly Grant:
    • $1,300
  • NJ Medicaid PCA Hourly Rates:
    • $14.50 Weekday, $16.00 Weekend
  • 10% Administrative Deduction (covers FI & Counseling Cost)

• Uses of Cash Grant
  • Hire Relatives/Friends
  • Hire Current Home Care Aide Privately
  • Use Agency Services as Private Pay Customer
  • Advertise and Hire Workers
  • Applicants--Washers, Microwave Ovens, etc.
  • Equipment--Comfort & convenience items
  • Supplies--not covered by NJ Medicaid
  • Purchase Services--Cleaning, Laundry, Errand
  • Home Modifications
  • Misc.--Taxi fare, out-of-pocket (not to exceed 10%)
  • Insurance, Worker Benefits, Background Check

• Challenges for New Jersey
  • Reaching Target Audience
  • Diversity
  • Difficulty Finding Workers
  • Lack of Consumer Experience
  • Agency/Aide Sabotage

Calvin D.

Calvin is 44 years old, sustained a Brain Injury a number of years ago, has seizures and is visually impaired. He lives by himself in an apartment and is able to perform most activities of daily living independently.

• Agency Service:
  • Calvin was authorized for 9 hours of personal care service per week. Most of the service was intended to assist him with housekeeping and meal preparation.

• Amount of Cash Grant:
  • Calvin gets only $508.00 per month under the Personal Preference Program. Although his grant is small, Calvin has turned out to be a real "money manager."

• Uses of Cash Grant:
  • He hired a friend who works for him 9 hours a week and is getting paid $10.00 per hour. He allocates about $25.00 each month for taxi fare so he can do his own shopping and errands. The balance of his grant he has targeted for devices that can help him be more independent. He has already obtained a "talking watch" and a new telephone with extra large numbers. He is planning to buy a microwave oven when he has saved enough in the future. He used part of the grant for insurance for his workers.

• Result:
  • Calvin is much more independent than he was under the agency model. He has taken responsibility to budget his funds to make himself more self-sufficient.

Mr. & Mrs. R.

He is 94, deaf and has hypertension. His wife is 91 and has Parkinson's and has become confused and disoriented. They live with their daughter, who tries to work full time and also care for her parents at the same time. This family moved to the US from the Philippines.

• Agency Service:
  • Medicaid authorized 20 hours a week of personal care services for the husband and 40 hours for the wife. The PCA agency was only able to provide about 30 hours a week in total.

• Amount of Cash Grant:
  • The couple's cash grant is approximately $3,250 per month.

• Uses of the Grant:
  • The daughter serves as their "representative" in the Personal Preference Program. She hired a friend from the Philippines to come and work as a "live in" and she is paid for about 60 hours a week. Other family members have been hired as "back up" staff if needed. The couple is saving $330.00 per month to build a ramp and to modify a bathroom on the first floor.

• Result:
  • The daughter has been able to maintain her employment and the couple are receiving care from an individual who speaks their language and is familiar with their culture. The home modifications will allow the couple to make better use of their living space.

Mike L.

Mike L., age 40, sustained a Spinal Cord Injury as a result of a swimming accident while he was in his 20's and he is quadriplegic. He lives by himself in an apartment which his family made barrier-free for him after he returned home from the rehabilitation hospital. At present he is taking courses at a local college.

• Agency Service:
  • Mike was authorized for 25 hours of personal care service under Medicaid. He was not happy with the aides, most of whom were middle-aged women ("they remind me of my mother!") and frequently he got less than the authorized service. He acknowledges that this was his own fault because of his attitude. Also, because he needs lifting and transferring, many agency aides were not able to meet his needs.

• Amount of Cash Grant:
  • Mike's current grant is about $1,380 per month.

• Uses of Cash Grant:
  • Mike has hired three regular employees and one back up person and is currently getting 27 hours a week of care. He pays each of his workers $10.00 per hour which has helped to ensure reliability. He also uses grant funds for medical supplies (not covered by Medicaid) and uses $15.00 each month towards nonmedical transportation costs.

[Table of Contents]

Preferences For Consumer-Directed Services Among Different Consumer Groups:
Cash and Counseling Demonstration and Evaluation Early Findings

Lori Simon-Rusinowitz, PhD, Deputy Project Director
Kevin J. Mahoney, PhD, Project Director
University of Maryland Center on Aging

Presentation Purpose

• Address preferences for consumer-directed services among different consumer groups
• Consumer groups addressed:
  • Younger/older consumers
  • Different racial/ethnic groups
  • Consumers with different levels of disability
  • Consumers with cognitive disabilities
  • Consumers with a relative/friend to hire as a paid worker

Cash and Counseling Demonstration and Evaluation (CCDE) Data Sources

CCDE Background Research

• Determining Consumers' Preferences for a Cash Option: A Three-Part Study
  • Part 1: Pre-survey Focus Group Discussions
  • Part 2: Telephone Surveys
  • Part 3: Post-Survey Focus Group Discussions

CCDE Research with Program Participants

• Social marketing/outreach focus groups
• Surveys of cash option consumers: Preliminary findings
• Case studies of cash option consumers
• Quality assurance study

Social Marketing/Outreach Focus Groups

• Purpose: To develop outreach strategies to inform personal care consumers and their families about the cash option
• Conducted with Florida Departments of Elder Affairs and Developmental Services
• Elder Affairs focus group participants: 45 case managers, consultants, and supervisors in four focus groups, October 2000
• Developmental Services focus group participants: 24 Family Care Council members, Independent Support Coordinators, and self-advocates in three focus groups, December 2000-March 2001
• Conducted by University of Maryland Center on Aging

Case Studies of Arkansas Cash Option Consumer Team Triads

• Purpose: to develop "stories" describing the experiences of 27 Arkansas cash option consumers and their relationships with team triad members
• In-depth, in-person interviews with consumers, representatives when needed, paid workers, and counselors, March-June 2000
• Conducted by University of Maryland, Baltimore County, Department of Sociology and Anthropology

Arkansas Quality Assurance Study

• Purpose: To develop an approach to assuring high quality personal care services consistent with consumer-direction principles.
• Focus groups with Arkansas cash option consumers, family members, and paid workers, April 2001
• Conducted by Scripps Gerontology Center, Miami University

Older/Younger Consumers

CCDE Background Research

• Telephone survey (n=2140):
  • Interest in the cash option tends to decline with age; however, a high percentage of older consumers were interested.
  • Interest peaked in the 30's-50's (about 60% of consumers), about 50% of consumers in the 60's, and about 30-40% of consumers in their 70's-90's were interested in the cash option.

Preference Study Focus Group Findings

• Consistent with survey findings, focus group participants indicated various levels of interest in the cash option among younger and older consumers.
  • Some consumers of all ages liked the idea of a consumer-directed cash option.
    

    "I think it would be great. WHY? Because I would have the control over who was going to come into my home, and what they were going to do and how they were going to do it." (FL Elder)

    "...you're in charge. You're the one that dictates what these people are going to do for your care." (FL Elder)

    "This is a great program. It's really good...it puts me in a position of not being beholden and not being under someone else's thumb." (NY Consumer <65)

  • Some consumers of all ages disliked the idea of a cash option.
    

    "I think it would be best for us to keep our program like it is. They might not give you enough money to pay for this stuff. Then...you haven't got anything." (FL Elder)

    "Already we're dealing with our medication, we're dealing with our doctors, we're dealing with our families...this is just the worst." (NY Consumer <65)

CCDE Research with Program Participants

• Preliminary findings show that 73% of 200 Arkansas Demonstration consumers are elderly and 54% of 231 New Jersey Demonstration consumers are elderly.
• Case Studies of Arkansas Cash Option Consumer Team Triads:
  • Ms. Gwen Fuller, a 69 year old, African-American woman, was able to leave a nursing home and move into her niece's apartment with her cash benefit.
  • Her niece moved into a larger apartment and began a home-based business so her aunt could live with her.
  • Ms. Fuller's niece is her representative and her grandniece is her paid worker.
  • She is surrounded by family.
• Social Marking/Outreach Focus Groups:
  • Florida Department of Elder Affairs case managers overwhelmingly believe that older persons are not good candidates for the cash option.

Consumers from Different Racial/Ethnic Groups

CCDE Background Research

• Telephone survey (n=2140):
  • African-American respondents were 1.9 times as likely to be interested in the cash option, and Hispanic consumers were 1.6 times as likely to be interested in the option when compared to Caucasian respondents.
• Preference study post-survey focus groups
  • When focus group participants were asked why they thought African-American and Hispanic survey respondents showed greater interest in the cash option than Caucasians, consumers and surrogates in all four states cited similar reasons:
  • The cultures of African-Americans and Hispanics tend to have strong family networks and emphasize caring for family members
    • ...they are more caring. They got that family value or something. When it comes to sticking together, mostly they are really tight. (NJ African-American Representative)
    • "We're very interested, and our families, we want to have them in our homes. (NJ Hispanic Representative)
  • The ability to feel independent and in control would be a source of pride for African and Hispanic participants.
    • "And we've been dependent on the government so long. A program comes along like this, it seems like heaven. Yeah, right." (AR African-American Consumer)
  • The cash option could bring much-needed jobs (as personal care workers) to African-Americans and Hispanics.
    • "It would be an income for someone else. ...some want to work and really need to work and can't get a job...So most likely, there are some young ladies out there who would be glad to sit with the elder person, to have an income..." (AR African-American Representative)

CCDE Research with Program Participants

• Case Studies of Arkansas Cash Option Consumer Team Triads:
  • Mrs. Cynthia Williams, an 85 year old African-American woman, lives with a daughter who is her paid worker.
  • Another daughter is her representative.
  • They describe their sense of family responsibility in caring for their mother:
  • "It's basically a family thing. We just help Momma out. ...she provided for us and let herself go, and now is our time to try to help her as much as we can. ...I can remember times she made sure we had shoes and she was putting cardboard in the bottom of her shoes..."
• Arkansas program experience: Arkansas participants are 64% Caucasian (1289/2008) and 33% African-American (667/2008), which is slightly higher enrollment among African-American consumers than expected from the racial composition of Arkansas personal care client population.

Consumers with Different Levels of Disability

CCDE Background Research

• Telephone survey (n=2140):
  • Consumers classified in the severe range of the ADL scale were 1.5 times as likely to be interested in the cash option as those in either mild or moderate categories of disability.
• Preference study focus group findings:
  • When asked to explain why consumers with more severe disabilities were more interested in the cash option, focus group participants offered poignant insights.
    • "The more disabled you are, the less disabled you want to be. If you can manage your own care in any degree of normalcy, it helps you to be like the rest of the world." (FL Consumer)
    • "...you have a say so in your life again. You have no control over your life." This way you're working your way up...It gives you a sense of independence that you are somebody, you're not just a number in a file cabinet somewhere. (FL Consumer)
    • ...when you're in a terminal type of disease and you're working real hard to still hold your dignity...to feel a certain amount of pride in yourself..." (FL Elder)

CCDE Research with Program Participants

• Surveys of Arkansas Cash Option Consumers: Preliminary Findings
  • For the first 200 cash option consumers, more than half reported being in poor health, most with chronic illnesses.
  • Many have extreme difficulty with ADL's, leading more than 60% to have paid help with getting out of bed and 90% to have paid help with bathing.
  • More than half needed paid help with eating and using the toilet.
• Case Studies of Arkansas Cash Option Consumer Team Triads:
  • Daniel Gentry, is a 20 year old young man with advanced muscular dystrophy.
  • He has a high level of disability and "needs help with just about everything," including a ventilator for breathing and a feeding tube for eating.
  • He is intellectually engaged and active in many projects.
  • Daniel lives with parents; his mother is his paid worker.
  • The cash option has allowed his mother to stop babysitting in their home, which put Daniel's health at risk from illnesses brought into the home.
  • It allows her to provide his extensive, complicated care, which is very important as there are very few people with whom she would entrust his care.
  • "The biggest thing I'm enjoying is to afford entertainment for him. I can rent him a DVD, I can rent him a movie, we can go to the movies, we can afford to put gas in the motor home to go camping again. The motor home sat there all of last summer...(because they couldn't afford gas)." "We try to have some fun everyday."

Consumers with Cognitive and Developmental Disabilities

CCDE Background Research

• Telephone survey findings:
  • Florida surrogates for children with developmental disabilities had the highest level of interest among all survey participants--79% (n=399) were interested in the cash option.
  • Among Florida adults with developmental disabilities, 45% (n=378) of all consumers were interested in the cash option.
  • When Florida surrogates for adults with developmental disabilities were asked about their own interest in the cash option, 45% (n=267) were interested.
  • Surrogates' (for adults with developmental disabilities) interest in the cash option is highest among surrogates in their 40's, and decreases as the ages of consumers and surrogates increase. However, almost one half of surrogates in their 60's and over one-third of surrogates in 70's are interested.
• Preference study focus group findings
  • Of all the pre-survey groups, parents of children with developmental disabilities were by far the most enthusiastic about the cash program.
    • "There's no spontaneity in our lives whatsoever...it would give us much more freedom."
  • Parents or representatives of older children with developmental disabilities were less interested in the cash option.
  • They explained that parents became "burned out" and may not want to take on the additional responsibilities required by participation in the cash option.
    • "...parents get so fried by the time their kids reach nine, ten years of age, that they want somebody else to do everything..., because you fight with the schools, you fight with the doctors, you fight with the states." (FL Parent of Child with Developmental Disabilities)
  • Older representatives were less interested in the program. They discussed retirement, lack of resources and support, and their own health issues as they age to explain this finding.
    • "It's a physical thing. As children get older, obviously we get older. ...you have to say, gee...Can I do this in ten years? Can I do it in five years? (FL Parent of Child with Developmental Disabilities)

CCDE Research with Program Participants

• Florida Developmental Services social marketing/outreach focus groups
  • When asked to help explain the survey finding that many older parents of adult children with developmental disabilities remain interested in the cash option as they aged, parents of children with developmental disabilities offered this insight.
    • Older parents see younger children as having much more opportunity today than their children had.
    • No matter how old the parents, they want more opportunity for their adult children now.
  • A mother of a daughter with developmental disabilities reported "it's horrendous as far as getting providers and it's great to be able to know you can use your family members. You can use your family members. You can use your neighbors. You can use people from church."
  • One mother of a son with developmental disabilities was able to visit Vietnam to see family as...she was able to get somebody that she trusted with her son.
• Arkansas quality assurance focus groups
  • A mother of a daughter with severe developmental disabilities defined quality/satisfaction with the cash option as being able to hire a close friend/nurse to care for daughter.
  • This arrangement offers the mother respite. She can save hours to go on vacation with other family members, and her friend can care for her daughter.

Consumers with a family member/friend ready to hire

CCDE Background Research

• Telephone survey findings (n=2140):
  • When asked reasons for being interested in the cash option, 90-92% of consumers across four states reported that being able to hire your own worker, including a friend or relative, made them interested in this program.
• Preference study focus group findings
  • While most focus group participants agreed that the option of hiring relatives or friends as their personal care worker was a positive program feature, reactions were mixed about doing so.
  • On the positive side:
  • Consumers would be able to pay a friend or family member already helping them out with personal care needs.
    • "For once, your family member can actually help you and get paid..." (NJ African-American representative)
  • Relatives would know better the special needs, likes and dislikes of the consumer for whom they are caring, and it enables the consumer to pay them for the work they do.
    

    "I'd rather trust someone in the family's that's capable." (NY Caucasian Representative)

    "I like the idea of friends and family, because they more or less know what I like and how I like it." (FL Caucasian Consumer)

    "...if I had the option to have a family member or a friend come in, it would be a blessing. Because at the same time there are family members who don't have a job and who know my needs and would be able to care for me." (NJ African-American Consumer)

  • Hiring a relative or friend would enable consumers to hire someone of the same ethnicity, an important factor for African-Americans and Hispanics.
    

    "Hispanics know how to pick up a fruit or a vegetable...I prefer Hispanic, because of this aspect of it. Because Hispanics, you could say, buy me something, and they know." (NJ Hispanic Elder)

  • However, others were more skeptical of hiring family and friends.
    

    "I don't think all family members would be as professional as you would hire someone out from an agency." (FL Elder)

    "Money and friends or family never mix." (NY Consumer)

CCDE Research with Program Participants

• Cash Option Consumer surveys in Arkansas and New Jersey: Preliminary Findings
  • Arkansas consumers almost always hired people they were already close to personally.
  • Over three-fourths chose a family member, and another 15% opted for a friend, neighbor, or church member.
  • Consumers reported high satisfaction levels with times of day they could get help (95%), the care arrangements they made, and their relationship with their hired worker (100%).
  • Three-fourths of the 81 New Jersey clients who hired caregivers hired family members.
  • 37% hired friends, neighbors, or church members.
  • 27% hired a caregiver recommended by family or friends.
  • 27% hired former home care agency workers.
  • Case Studies of Arkansas Cash Option Consumer Team Triads:
    • Mrs. Pearl Rose, an 87 year old white woman, lives alone, has several daughters who live close by to provide 24 hour/day care.
    • She has several serious medical problems--she needs to be fed through a feeding tube, she has a blocked heart artery that is inoperable, and she requires breathing treatments four times/day.
    • She is never left alone, even at night.
    • The seriousness of Mrs. Rose's physical problems and the need for constant monitoring require a true sense of devotion on the part of her family.
    • Her daughters have taken care of her for two years as they did their late father.
    • As one daughter explained, "There are four girls and three husbands and it takes all of us and a cousin.
    • That way we take care of it, and we know that she is taken care of."

Conclusions

Conclusions about the Preferences of Different Consumer Groups for Consumer-Directed Services

• While younger consumers are more interested in a consumer-directed cash option, many older consumers are interested.
• The majority of consumers participating in Arkansas and New Jersey are elderly.
• Preference study findings indicate that African-American and Hispanic consumers are more interested in a consumer-directed cash option than Caucasian consumers.
• Experience in Arkansas indicates slightly higher enrollment among African-Americans than expected from the racial composition of the eligible Arkansas personal care client population.
• Preference study findings and actual program experience indicate high levels of interest among consumers with severe disabilities.
• Preference study findings and very initial program experience indicate high levels of interest among families of children and adults with developmental disabilities.
• Preference study findings and actual program experience indicate high levels of interest among consumers with family members or friends available to hire as paid workers.

Program Implementation Recommendations

• Cash option program features need to be flexible enough to include consumers of all types. Key cash option features that allow this flexibility include:
  • representatives for consumers needing help with cash option tasks
  • training to help consumers and representatives manage cash option tasks
  • bookkeeping services (fiscal intermediary) to assist with payroll tasks
  • consultants to help consumers and representatives manage the program and oversee cash management plans
  • ability to hire family members/friends as paid workers
  • help linking consumers and workers for consumers without family members/friends available as paid workers

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Self Determination

Beth McArthur
Connecticut Department of Mental Retardation

What have we accomplished?

• Self Determination/Individual Support for over 430 people
• Funding of $10.5 million to support individuals
• Opportunities for families to utilize the concept to support children and young adults
  • 62 children under 18
  • 118 young adults 18-25
  • 42% of all participants are 25 or younger
• Availability of 20 brokers to support individuals and their circles
  • 3 additional brokers to be hired by June 30th
• Comprehensive training for brokers, private sector and regional staff
• Generated great interest among individuals and families
  • FY 00/01 biennium added 151 people
  • Over 60% of all new development was with Individual Support
• Regional pilots for broker selection
• Choose regional liaisons
• Initiated cooperative ventures with private providers
  • 46 traditional private providers support people
  • 6 new providers support people
  • Creative pilots to transition from traditional services
• Established fiscal intermediaries -- individual choice
• Created individual automated budgets
• Provided people with the option of hiring staff or using providers
• Amended the contracts to make money portable
• Created a provider director

New Directions

• Individual Support and Self Determination is the preferred approach and a new way of "doing business"
• Waiting List Initiative: creates the concept of systemic individual funding that is to be self-directed
• Expand the availability of brokers through redeployment and research of a parallel private sector model
• Create the function of Self Determination Directors
• Refine and standardize the concept of portable resources
• Seek Medicaid reimbursement for Individual Support
• Allow families to access the Connecticut Job Bank
• Create individual budgets for all school graduates
• Issue protocols for:
  • Individual budget development
  • Individual Support agreement development
  • Individual planning
  • Broker selection
  • Fiscal Intermediary selection and contract employment management protocols

Remaining Challenges

• Is Self Determination linked to the availability of new resources?
• How will we have a significant impact on people who wish to leave group residential settings?
• How will we develop and sustain circles?
• What will we do for people in crisis?
• How will we nurture and sustain brokers?
• How will we keep person centered planning fresh?
• How will we standardize and not overly bureaucratize our approach?
• How will we not "drift" as a result of implementation pressures?
• How will we utilize the principles for people at some level who live with others?

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Self-Determination:
The State of the Art in Supporting People with Developmental Disabilities in the U.S.

James W. Conroy, Ph.D.
Supported by The Robert Wood Johnson Foundation and Monadnock Developmental Services

The Professionals Who Created This Concept Wrote A Proposal

• To the largest health care foundation on Earth:
• The Robert Wood Johnson Foundation
• (RWJ money came from the invention of the Band-Aid and other health products)
• They won the grant
• The first ever given in developmental disabilities field by that Foundation

The U.S. Had A Well Developed Community Service System in 1993, But Advocates Were Not Satisfied!

• Overly restrictive
• Overly regulatory
• Overly costly
• Failure to be flexible
• Failure to individualize
• Failure to support choice
• Failure to support development

A Brief History

• 1993 Original Proposal to RWJF
• 1995 Statewide in New Hampshire
• 1996 RWJF Decision to go National
• 1997 Grants to 19 States
• 1998 10 More Planning Grants
• 1998 National Evaluation Begins
• 1998 10 More States Join With State Funds
• 1999 Michigan shows positive results

Sean

• Just graduated from high school
• Terrible car accident, fell into a coma
• Sean's state did not have any nursing homes for head injury
• Professionals sent Sean to another state's nursing home

Sean Lived in a Nursing Home

• For 4 years
• 100 miles from his parents
• He didn't get much individual attention
• And he didn't improve
• His care was costing $140,000 per year
• No one was happy

Sean's Parents Asked:

• Isn't there another way?
• How much is all this costing government?
• $140,000? Really? You're kidding, right?
• If we had control of that money, we would do things very differently.

Local Authorities Asked:

• Really? What would you do differently?
• That nursing home is the only one around that specializes in head injury.
• What could you non-professionals do for Sean?

Sean's Parents Said:

• Buy a house (not expensive in Keene)
• Adapt the house
• Rent out the upstairs
• We would hire a nurse to train others
• His high school friends and neighbors to work as his attendants
• And we would have him close to us
• We would adapt a house for him
• We would hire his high school friends to work as his attendants
• We would hire nurses part time to oversee his care
• And we would have him close to us

Local Government Thought This Just Might Make Sense

• Courageous local leaders went to state and federal officials
• Explained the situation
• Asked permission to experiment with putting family in charge of how the money was spent
• Courageous state and federal officials agreed to "look the other way" while regulations were being "bent"

Sean Came Home

• Government dollars were used to buy a house
• And to make it accessible
• And to put in special bathroom and a lift
• Friends were hired as attendants
• They took Sean into town on outings
• Family visited frequently, reading to Sean, talking in his presence, and touching him

Outcomes:

• Total dollars spent, even with the down payment on the new home and the payments on the mortgage, went down below $70,000
• (Even in the first year)
• Even lower now
• In 1996, Sean began to open his eyes and focus
• In 1997, he began to speak
• Most of us think that would not have happened in the nursing home--EVER

A Look at a Possible Future--What If:

• Institutions were gone, or nearly gone?
• And all children had the right to go to their neighborhood schools, no matter what their disabilities?
• And most adults lived with relatives with in-home support of whatever kind needed?
• And some adults lived in decent community group homes with 24 hour supervision?
• But these homes were very, very expensive and people did not like them very much?

Excerpts From the Original Proposal, 1993

• For people with severe long term and chronic conditions, specifically developmental disabilities, our service delivery practices are so outmoded, so disenfranchising, and so costly that radical departures must be demonstrated and evaluated immediately. We believe that on average many of these costs can be controlled and in many instances reduced for those in residential, day/employment services.

The Original Concept

• Self Determination:
  • If people gain control,
  • Their lives will improve,
  • And costs will decrease.

"If People Gain Control"

• Meaning that focus people and their freely chosen allies gain power over life choices
• Meaning that professional domination of all life choices diminishes
• Meaning more participation in planning process from unpaid people
• Meaning, most of all, that INDIVIDUAL BUDGETS are developed via "targeting"

Individual Budgeting

• Right now, our systems only have "group budgets"
• A facility budget, divided by the number of people
• But if we look at what's being spent for a person, we can dream about other ways to use the money

"Their Lives Will Improve"

• But we don't necessarily know how
• It could be in many areas of quality of life
• Or it could be in none
• The proper strategy: we must measure as many things as we know we can do well, within resources
• And we must collect the perceptions of the participants themselves

"And Costs Will Decrease"

• Non-professional control of resources will permit more precise purchasing
• Decreased reliance on "one size fits all" mentality
• Lessening of "over-service"
• Increased utilization of natural and community based supports
• Some degree of escape from the traditional human services "vortex" of over-spending and over-controlling

Fear:

• How could government possibly turn over power to families?
• And to the people with mental disabilities?
• Officials are naturally frightened of such a concept.

Elements of Self Determination

• Support and encourage choicemaking
• Control of resources
  • Signoff on service provider invoices
• Case managers--->>Personal agents
• Person centered planning
• De-professionalization
• Training, untraining, and retraining

Roots of Self-Determination

• Deinstitutionalization
• Person-centered planning--O'Brien et al
• Supported living, supported employment
• Independent living movement
• Civil rights movements
• Family supports, family-driven
• Self-advocacy

Self-Determination in New Hampshire, 1994-1996

• 45 People
• 3 years
• All kinds of people with all kinds of support
• Results began to show up after just 2 years
• We studied how planning changed, who had power, how people liked the "new way," and how money was spent

Changes in the Planning Process

An Example of a Change in the Planning Process:

• Who makes plans? Who's "in charge"?
• "I thanked RWJ and self determination for giving back our lives. Because we lost our lives for those years that Josh was in an institution or a group home. We were just dictated to."
• --Jackie - Josh's mother

The Decision Control Inventory: Shifting Power

• The DCI Measure
• How Decisions are Made in 26 Life Areas
  • Examples: Who to live with, What food to buy, What clothes to wear, What to do with personal money, Time and frequency of bathing and/or showering.
  • Scale: from 100% paid staff decisions to 100% person and/or unpaid loved ones.
• Conservative Estimate of Reliability: .86

Power Shift

• This is my place! I bought it! I needed it to be on one floor, and to have a place for my trains. And it does!
• Public funds were used to buy a home for David, with Mom's help. That's a radical departure from American practices. An "investment" in David.

Participant Satisfaction and Perceived Quality of Life

• Individual Interviews
• Increased overall satisfaction ratings
  • 7 point increase from Time-1 to Time-2
• Perception of large improvements in qualities of life over the past year
  • Statistically significant in 8 of 9 areas

Mike--A Man Living in Michigan

• Was living in a group home
• Did not like it
• "Behavior problems"
• What do you like?
• My own place.
• Who do you like?
• My twin sister.

Take the Same Money, And ...

• Spend it differently
• Mike's twin, Michelle
• Wanted to support her brother
• But she had to work to make money and have a home
• With Mike's money, Michelle was "hired"
• Public dollars are now being spent very differently!

Behavioral Development

• Adaptive Behavior:
  • There were no expectations.
• Challenging Behavior:
  • There were no expectations.
• Productive Behavior:
  • There were no expectations.

Mary's Greatest Joy: Cars and Taking Drives

• Mary now OWNS this car
• Although she can neither drive nor speak
• And her former Case Manager now works for her half time
• Mary can now get out and go, go, go, whenever she wants to
• "Behaviors" have vanished
• Power has radically shifted away from professionals, and toward Mary and her most trusted ally

Additional Outcomes

• Individualization - increased
• Physical Quality - enhanced
• Service hours per week - up, but NS
• Number of goals in plan - down
• Hours of day activities - up
• Earnings - up, but NS

Costs, Expenditures, Resources

• Could qualities of life be improved while resource utilization decreased?
• Could increased individual and non-professional control result in lower resource utilization?
• The results supported a clear conclusion.

Michigan Data: The Only Other Pre-Post Information So Far

• Over 750 Time-1 (baseline) PLQs
• Now 157 Time-2 PLQs in house
• More coming
• Matches in baseline data: 112

Choice in Context of Freedom

"I used to live in a group home. Every morning I was given a choice of hot or cold cereal. ..... I don't like cereal. Now I have my own place. The only food I have there is stuff I like."

It's Not Always About Getting More Money

• Sometimes, it's just a matter of spending it differently
• Just as with institutions, the same money can be spent differently
• And lives will improve
• Even if you're flat broke, changing your thinking might lead to progress

Rapid Spread: Projects Now Under Way in 37 of our 50 States

• Foundations gave 18 large, and 12 small grants to states
• 7 more states are using their own money
• We are now tracking 2,400 people involved in Self-Determination in the U.S.
• It's really "taking off"

The Most Critical Factor?
Current Theory: Courage

In the Words of Tolstoi:

• "I sit on a man's back, choking him and making him carry me, and yet assure myself and others that I am very very sorry for him and wish to lighten his load by all possible means -- except by getting off his back."

Power Increased

• People and their informal (unpaid) allies clearly increased power and control over life choices
• But formal (paid) allies also reported perception of increased power
• How could both groups increase power?
• Was new power created out of thin air?

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