Introduction
PURPOSE
To describe promising approaches and barriers to employment programs for persons with developmental disabilities.
BACKGROUND
Developmental disability is defined in the Developmental Disabilities Assistance and Bill of Rights Act, as amended by Public Law 103-230, as a "severe, chronic disability of an individual five years of age or older that is: attributable to a mental or physical impairment or combination of mental and physical impairments; manifested before the individual attains age 22; likely to continue indefinitely; and results in substantial functional limitations in three or more areas of major life activity." Nationally, the number of persons with developmental disabilities is estimated at approximately three to four million.
Major life activities which may be affected by a developmental disability include: self-care; receptive and expressive language; learning; mobility; self-direction; capacity for independent living; or economic self-sufficiency. Developmental disabilities affect a person's ability to work, live, socialize, and maintain self-sufficiency in a community setting. Individuals with developmental disabilities need a combination of special interdisciplinary services, supports, or other assistance of lifelong or extended duration. Such services or assistance are typically planned and coordinated individually. Without appropriate services, people with developmental disabilities are isolated rather than fully integrated into mainstream society.
State Developmental Disabilities Councils
The Developmental Disabilities Assistance and Bill of Rights Act established Developmental Disabilities Councils in each State. Their mission is "to assure that individuals with developmental disabilities and their families participate in the design of and have access to culturally competent services, supports, and other assistance and opportunities that promote independence, productivity, employment, integration, and inclusion into the community." The goals of the Developmental Disabilities Assistance and Bill of Rights Act include: promoting integration into work and community settings so that individuals with developmental disabilities are not separated or isolated from others; protecting individual rights; ensuring they will have accommodations they need; and ensuring they will have control over their own resources.
Specifically, State Councils are defined in the Statute as organizations designed to "promote (through systemic change) capacity building, advocacy activities, the development of a consumer and family-centered comprehensive system, and a coordinated array of culturally competent services, supports, and other assistance designed to achieve independence, productivity, and integration and inclusion into the community for individuals with developmental disabilities."
State Councils build on community and family resources to infuse new creativity and vision into policy and leadership of State, local, and private programs. While there are general priority areas for State Councils (i.e., employment, community living, child development, system coordination, and community education activities), the only Federally mandated area for all Councils is employment activities.
The Act specifies that State Councils will have administrative and program staff and must complete 3-Year State Plans. The State Councils must submit annual reports of performance to the Administration on Developmental Disabilities (ADD) within the Administration for Children and Families (ACF) covering goals as identified in State Plans and the select areas of emphasis in which their States will specialize. As of 1997, State Councils are required to select performance measures related to outcomes in the annual program performance reports to the ADD. The Councils submit outcome information on at least one measure out of a group of 22 employment-related performance measures. Each year, State Councils must demonstrate that they have assisted persons with developmental disabilities in their State in obtaining and keeping employment consistent with their interests, abilities, and needs.
State Council members are appointed by State Governors. One-half of the membership must include a combination of (a) persons with developmental disabilities;
(b) parents/guardians of such persons; and (c) immediate relatives of individuals with developmental disabilities who are not employees of State agencies which receive funds or provide services.
State Councils are funded by Federal and State matching funds based upon a formula that involves the number of individuals in the States who are developmentally disabled. Nationally, funding for State Councils was approximately $65 million per year for 1996, 1997, and 1998.
Administration on Developmental Disabilities
The Federal agency responsible for oversight of the State Councils is the Administration on Developmental Disabilities within ACF. It provides guidance to State Councils, sponsors and funds training sessions, and conducts monitoring functions for oversight and compliance with program guidelines. The ADD, along with ACF regional offices, provides technical assistance on policy and other issues to numerous Councils each year.
In addition, its staff conducts random, programmatic reviews of a small number of State Councils on management and technical issues. State Councils submit annual program performance reports to ADD covering program goals and accomplishments, and priorities and functions related to the various State initiatives and activities.
National Disability Associations
There are two national associations which provide support and advocate programs for persons with developmental disabilities -- the National Association of Developmental Disabilities Councils and the Consortium of Developmental Disabilities Councils. They encourage and promote activities of State Councils, and are active in legislative matters concerning developmental disability issues. The National Association of Developmental Disabilities Councils recently was awarded a contract by ACF to provide technical assistance to State Councils. This assistance is expected to strengthen State Councils' capabilities to construct an effective data management system and also assist the States to meet the data requirements mandated by the Government Performance and Results Act of 1994.
Vocational Rehabilitation and Mental Health Agencies
The Rehabilitation Act of 1973, as amended, authorizes the Department of Education's Vocational Rehabilitation program to provide comprehensive vocational rehabilitation services designed to help those with the most severe physical and mental disabilities return to the work force. This is primarily done through Federal funding to State Vocational Rehabilitation Agencies that directly provide services. These services include counseling, work evaluation, work adjustment training, job skills training, job-seeking skills training, and medical rehabilitation management.
The Federal/State vocational rehabilitation program is operated and administered through a combination of State general and blind-only vocational rehabilitation agencies and various other State and private facilities. These agencies provide individualized vocational rehabilitation services to accepted individuals according to a written rehabilitation plan that is jointly developed by a counselor and the individual. Counselors evaluate whether there is a reasonable expectation that the individual will benefit from vocational rehabilitation services in terms of their employability. This judgment is based on the individual's impairment and the availability of services and resources.
State Mental Health agencies are advocates for individuals who have a mental illness, which may or may not include persons with developmental disabilities. Their personnel interact with various institutions and organizations to assist individuals in their socialization and adaptive skills. State Mental Health agencies assess appropriate job opportunities for individuals with developmental disabilities and are influential in setting Statewide goals and policies for persons with mental illness and developmental disabilities.
The Health Care Financing Administration (HCFA) has Home and Community Based Services (HCBS) programs available to assist persons with developmental disabilities in their jobs. These serve as waivers to the basic requirements that States have in operating their medical programs. The HCBS waivers approved by HCFA allow for limited reimbursement of prevocational services and supported employment services. Prevocational services are aimed at preparing an individual for paid or unpaid employment, but are not job-task oriented. Supported employment services are conducted in a variety of settings, particularly in work sites where persons without disabilities are employed. Supported employment services consist of paid employment for which competitive employment at or above the minimum wage is unlikely. In this manner, supported employment helps persons with developmental disabilities who, because of their disabilities, need intensive ongoing support to perform in a work setting.
SCOPE AND METHODOLOGY
The Commissioner of the Administration on Developmental Disabilities requested the Office of Inspector General to conduct this study.
Our purpose was to identify, describe and assess promising approaches to promote employment of persons with developmental disabilities. We based our study on information gathered from State Developmental Disability Councils, Vocational Rehabilitation agencies, Mental Health agencies, Mental Retardation/Developmental Disabilities agencies, job service agencies, and employers. We asked our respondents what approaches they believed were effective and what barriers they were confronting. We compared answers from different respondent groups to identify commonalities. We analyzed program performance reports and outcome data where available.
Our method does not yield proof of program effectiveness, but it does provide the best assessment of promising approaches based on the insights and experience of responsible professionals and evidence available in administrative records and allied documents. It provides leads and suggestions for approaches that appear worthwhile for further experimentation and development, and identifies some approaches which, based on experience to date, should probably be avoided.
We selected a judgmental sample of nine State Developmental Disabilities Councils. Six of the Councils are affiliated with the National Association of Developmental Disabilities Councils, while the remaining three Councils are affiliated with the Consortium of Developmental Disabilities Councils. In addition, seven of the nine sampled States have numerical employment goals outlined in their three-year State plans. We obtained a mixture of States with large populations and small populations. We also conferred with
ADD on State Council selection as to States which appear to have some promising employment approaches. The nine States are Florida, Massachusetts, Michigan, Nebraska, New Mexico, Ohio, Oregon, South Dakota, and West Virginia.
In addition to the 9 State Councils, we also obtained information from 9 Vocational Rehabilitation agencies, 8 Mental Retardation/Developmental Disabilities agencies,
4 Mental Health agencies, 10 employers, and 13 job agencies. We conducted telephone surveys of Executive Directors for the nine Councils to determine specific employment activities supported by those Councils during 1996, 1997, and 1998. We obtained and examined performance information submitted to ACF on program performance reports, reviewing the types, extent, and outcomes of employment programs supported by the State Councils which specifically assist individuals with developmental disabilities.
We conducted on-site visits at four of the nine sampled States. On-site visits were selected in part based on promising approaches identified in the telephone surveys. During these visits, we interviewed the Executive Director of the State Council and Council staff, the State Vocational Rehabilitation Director, the State Mental Health Director, the State Mental Retardation/Developmental Disabilities Director, a job agency, and at least one employer that participates in programs to hire persons with developmental disabilities. We gathered additional insights and perceptions on promising employment programs which expanded upon and substantiated our prior telephone discussions.
For the remaining five States, we gathered information from directors of Mental Health, Vocational Rehabilitation, and Mental Retardation/Developmental Disabilities agencies, as well as job agency directors and employers. In all, we gathered information from
53 State entities, employers, and job agencies. We gathered information on systematic processes, roles of various State entities, key factors and relationships among State entities, documentation of employment activities, and barriers and how to minimize them.
We conducted our review in accordance with the Quality Standards for Inspections issued by the President's Council on Integrity and Efficiency.