An Assessment of Federal Laws and Programs Affecting Persons with Disabilities--With Legislative Recommendations

A Report to the President and to the Congress of the United States
February 1986

National Council on Disability
(formerly National Council on the Handicapped)

National Council on Disability
1331 F Street NW
Suite 1050
Washington, DC 20004-1107

(202) 272-2004 Voice
(202) 272-2074 TT
(202) 272-2022 Fax

Acknowledgment

The Council wishes to acknowledge and convey its sincere appreciation to the many individuals and organizations who contributed to this report. Numerous people with disabilities, parents, service providers, advocates, business persons, legislative policy advisors, and other experts from all the fifty states contributed to this effort by participating in public forums, attending advisory meetings, and otherwise providing input and assistance to the Council in the process of developing the ideas and recommendations contained in the report.

Table of Contents

Description Of The National Council On The Handicapped

Council and Staff Members

Executive Summary

Introduction

The Population With Disabilities

Assessment of Federal Laws and Programs Affecting Persons With Disabilities

Current Priorities in Federal Programs

Analysis of Federal Programs in Specific Topic Areas With Legislative Recommendations

Equal Opportunity Laws
Employment
Disincentives to Work Under Social Security Laws
Prevention of Disabilities
Transportation
Housing
Community-Based Services for Independent Living
Educating Children With Disabilities
Personal Assistance: Attendant Services, Readers, and Interpreters
Coordination

List of Federal Programs Affecting Persons With Disabilities

Biographies of Members of the National Council on the Handicapped

References

Letter Of Transmittal

Text of identical letters sent to the President of the United States, the President of the Senate, and the Speaker of the House of Representatives)

February 1, 1986

The National Council on the Handicapped is pleased to issue this report on Federal laws and programs serving people with disabilities. It was developed in response to a specific statutory mandate that the Council:

Assess the extent to which [Federal] programs provide incentives or disincentives to the establishment of community-based services for handicapped individuals, promote the full integration of such individuals in the community, in schools, and in the workplace, and contribute to the independence and dignity of such individuals ... [and] recommend to the President and Congress legislative proposals for increasing incentives and eliminating disincentives in Federal programs based on the assessment made... (Public Law No. 98-221, Section 401a)

The Council developed this report in consultation with knowledgeable persons with disabilities and experts on disability service programs throughout the country.

The report summarizes the Council's findings and presents its recommendations, reflecting the consensus of the Council on the issues addressed. As requested by Congress in the statutory directive concerning the report, it includes a listing of Federal programs serving people with disabilities prioritized according to Federal expenditures. The recommendations presented in the report are designed to improve the ability of persons with disabilities to live with dignity and as independently as possible within their communities. An Appendix under separate cover presents ten topic papers providing the Council's detailed analysis and conclusions upon which the recommendations in this report are based. The ten topic areas were selected by the Council for in-depth analysis and study because of their clear importance to persons with disabilities and to Federal policy regarding disability programs. The Council's recommendations offer the most constructive and realistic solutions it has identified to problems in each of these topic areas. The Council recognizes that there may be some disagreement about what are the "best" solutions in specific cases, but it is confident that everyone involved in disability issues will agree that the issue areas examined in this report are areas that must be addressed if we hope to achieve a coherent and constructive Federal approach to disability.

In analyzing Federal programs that affect people with disabilities and in formulating legislative recommendations, the Council has been very cognizant of the financial implications of its proposals, and has consistently sought to develop practical, fiscally responsible approaches. Indeed, one of the Council's key objectives has been to suggest ways in which Federal expenditures related to disability can be more prudently spent, and ineffectiveness and counter productivity minimized. The Council is confident that if the recommendations in this report are implemented, current Federal expenditures for disability can be significantly redirected from dependency-related approaches to programs that enhance independence and productivity of people with disabilities, thereby engendering future efficiencies in Federal spending.

The Council by no means views the submission of the recommendations presented in this report as completing its responsibilities in regard to the issues addressed. The report represents, rather, an agenda for the Council's work in the future, in conjunction with other statutory duties assigned to it. The Council will continue to monitor Federal programs serving people with disabilities, and to advise the Administration and Congress of its findings. The Council will continue to analyze the issues discussed herein, as well as to examine other topics not covered in this report. The Council expects to increase its coordinative role in the Federal policy arena by actively pursuing and encouraging communication linkages among consumers with disabilities and their families and Federal, State and local policy makers, program administrators, and service providers. The Council will also continue to attend to a major statutory responsibility of setting general policies for and monitoring the operation of the National Institute of Handicapped Research, one of our Nation's principal resources for investigating and testing solutions to problems related to disability.

The Council values the opportunity presented by this report to make a contribution to disability policy, and hopes that it marks a step toward a more active and productive dialogue among all the people who influence and are affected by disability policy.

Sincerely,

Sandra S. Parrino
Chairperson

Description Of The National Council On The Handicapped

The National Council on the Handicapped is an independent Federal agency comprised of 15 members appointed by the President of the United States and confirmed by the Senate. Established by the 95th Congress in Title IV of the Rehabilitation Act of 1973 (as amended by Public Law No. 95-602 in 1978), the Council was initially an advisory board within the Department of Education. In 1984, however, the Council was transformed into an independent agency by the Rehabilitation Act Amendments of 1984 (Public Law No. 98-221).

The Council is charged with reviewing all laws, programs, and policies of the Federal Government affecting disabled individuals and making such recommendations as it deems necessary to the President, the Congress, the Secretary of the Department of Education, the Commissioner of the Rehabilitation Services Administration, and the Director of the National Institute of Handicapped Research (NIHR). The Council is given explicit authority to establish general policies for and monitor the performance of NIHR, and to review and approve standards concerning Independent Living and Projects With Industry programs. In addition, the Council has been statutorily directed to submit to the President and the Congress, by February of 1986, the present report analyzing Federal programs and presenting legislative recommendations to enhance the productivity and quality of life of Americans with disabilities.

Whereas many government agencies deal with issues and programs affecting people with disabilities, the National Council on the Handicapped is the only Federal agency with the mandated responsibility to address, analyze, and make recommendations on issues of public policy which affect people with disabilities regardless of age, disability type, perceived employment potential, perceived economic need, specific functional ability, status as a veteran, or other individual circumstances. The Council recognizes its unique opportunity to facilitate independent living, community integration, and employment opportunities for people with disabilities by assuring a coordinated approach to addressing the concerns of persons with disabilities and eliminating barriers to their active participation in community and family life.

The National Council On The Handicapped

Members
Sandra S. Parrino, Chairperson
H. Latham Breunig, Ph.D.
Robert V. Bush, C.P.O.
Justin W. Dart, Jr.
Joe S. Dusenbury
John S. Erthein
R. Budd Gould
Hunt Hamill
Marian N. Koonce
Nanette Fabray MacDougall
Michael Marge, Ed.D.
Jeremiah Milbank, Jr.
Roxanne S. Vierra
Henry Viscardi Jr., L.L.D. (Hon.)
Alvis Kent Waldrep, Jr.

Staff
Lex Frieden, Executive Director
Brenda Bratton, Secretary
Ethel D. Briggs, Adult Services Specialist
Robert L. Burgdorf Jr., Research Specialist
Marilynne Gisin, Executive Assistant
Naomi Karp, Children's Services Specialist (On detail from
National Institute for Handicapped Research)
Janet Anderson, 1985 NCH Fellows
Laura Rauscher, 1985 NCH Fellows
Elizabeth Defay, Consultant-Editorial
Margaret A. Nosek, Consultant-Independent Living
John Raisian, Consultant-Economics

Executive Summary

The National Council on the Handicapped is charged by statute with reviewing Federal laws and programs affecting persons with disabilities and assessing the extent to which they "provide incentives or disincentives to the establishment of community-based services for handicapped individuals, promote the full integration of such individuals in the community, in schools, and in the workplace, and contribute to the independence and dignity of such individuals."

In this report, the Council presents its findings, conclusions, and legislative recommendations based upon its review and assessment of Federal laws and programs. The report includes a list of major Federal programs serving individuals with disabilities, ranked according to expenditures, with an estimated number of persons with disabilities served. From its analysis of such information, the Council draws three general conclusions:

1. Approximately two-thirds of working-age persons with disabilities do not receive Social Security or other public assistance income.
2. Federal disability programs reflect an overemphasis on income support and an underemphasis of initiatives for equal opportunity, independence, prevention, and self-sufficiency.
3. More emphasis should be given to Federal programs encouraging and assisting private sector efforts to promote opportunities and independence for individuals with disabilities.

Our nation's current annual Federal expenditure on disability benefits and programs exceeds $60 billion. This report proposes some fiscally responsible approaches for spending disability-related dollars more prudently and productively. The Council is strongly convinced that present and future costs of disability to the Nation are directly related to the degree of success we attain in reducing existing barriers, both structural and attitudinal, and in providing appropriate services to individuals with disabilities so that they may realize their full potential and become more independent and self-sufficient.

The Council has focused in detail upon ten major topic areas of particular importance to individuals with disabilities. These topics are discussed extensively in individual topic papers presented in the separate Appendix to this report. The Council's legislative recommendations in regard to the ten issue areas are summarized in the body of the report. They include the following:

Equal Opportunity Laws: The Council recommends the enactment of a comprehensive law requiring equal opportunity for individuals with disabilities, with broad coverage and setting clear, consistent, and enforceable standards prohibiting discrimination on the basis of handicap.

Employment: To increase employment among people with disabilities-a drastically underemployed segment of the population-the Council recommends several legislative changes, concerning the transition from school to work, supported employment, private sector initiatives, job training, job development, and placement.

Disincentives To Work Under Social Security Laws: The Council outlines several ways in which provisions of existing Social Security laws--Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid, and Medicare-serve to discourage and penalize people with disabilities if they seek to become employed and selfsupporting. In response to these work disincentives, the Council recommends corrective amendments to the problematic provisions.

Prevention of Disabilities: To promote the prevention of disabilities and to assure that individuals having disabilities do not suffer unnecessary secondary disabilities or exacerbation of their impairments, the Council recommends that the Federal Government mount a national program for the prevention of disabilities.

Transportation: The Council recommends amendments to Federal transportation legislation to achieve the Nation's established policy that "disabled people have the same right to use public transportation as nondisabled persons. " Proposals relate to urban mass transit, air transportation, intercity and interstate buses, and private vehicles.

Housing: To permit people with disabilities an opportunity to obtain appropriate housing, which is an important prerequisite to obtaining employment, living independently, and avoiding costly institutionalization, the Council makes several recommendations designed to prohibit housing discrimination and to promote increased appropriate and accessible housing for persons with disabilities.

Community-Based Services for Independent Living: To achieve productivity and independence, people with disabilities require a range of support services according to the nature and degree of their disabilities. The Council proposes a variety of measures, including amendments and funding support under Parts A and B of Title VII of the Rehabilitation Act, to promote the availability of community-based services for independent living.

Educating Children With Disabilities: The Council makes legislative recommendations regarding educational opportunities for children with disabilities. These recommendations respond to: the need for special education and related services during infancy; the need to educate children with special needs in regular education facilities; and the need to assess progress made since the enactment of the Education for All Handicapped Children Act.

Personal Assistance: Attendant Services, Readers, and Interpreters: Because of the critical importance of such services in fostering independence and avoiding expensive institutionalization, the Council recommends a national commitment to developing a quality system of attendant services, readers, and interpreters.

Coordination: The Council recommends that all Federal and Federally supported disability-related programs be authorized and required to develop a joint plan for the systematic coordination of services and benefits.

Introduction

Our country calls not for the life of ease, but for the life of strenuous endeavor.
President Theodore Roosevelt, 1899

As for other Americans, life for people with disabilities involves striving, working, taking risks, failing, teaming, and overcoming obstacles. We have all had the experience of seeking something that eludes us, of trying to reach a goal that seems to dance just out of reach. Most of us have also had the rewarding experience of surmounting obstacles to achieve a goal or accomplish a task, succeeding even though someone else or even we ourselves doubted we could do it.

A major difference between persons with disabilities and other individuals is the number, degree, and complexity of the barriers they face in trying to achieve their personal goals and fulfillment. Some of these barriers result from the disabilities themselves-a disability may be considered to be the lack of some mental, physical, or emotional "tool" which most other people can call upon in addressing life's tasks. A person with a physical disability, for example, may be unable to perform certain physical movements or functions that other people take for granted. A person with a sensory disability may lack or have significant impairment of one of the major senses, such as sight or hearing, which for other people provide important channels for receiving information about the world around them. An individual with a mental or emotional impairment may have a reduced ability to deal with the stresses of life or to sort out the real from the imagined. And people with cognitive impairments, such as learning disabilities and mental retardation, have disorders in the ability or rate of accepting, processing, storing, and recalling information.

But whatever the limitations associated with particular disabilities, people with disabilities have been saying for years that their major obstacles are not inherent in their disabilities, but arise from barriers that have been imposed externally and unnecessarily. As an international group of experts concluded:

Despite everything we can do, or hope to do, to assist each physically or mentally disabled person achieve his or her maximum potential in life, our efforts will not succeed until we have found the way to remove the obstacles to this goal directed by human society--the physical barriers we have created in public buildings, housing, transportation, houses of worship, centers of social life, and other community facilities--the social barriers we have evolved and accepted against those who vary more than a certain degree from what we have been conditioned to regard as normal. More people are forced into limited lives and made to suffer by these man-made obstacles than by any specific physical or mental disability.

Report of the United Nations Expert Group Meeting on Barrier-Free Design, International Rehabilitation Review, vol. 26, p. 3 (1975).

As detailed subsequently in this report, our Nation's current annual Federal expenditure on disability benefits and programs is more than $60 billion. Overall Federal spending associated with disability can be expected to mushroom as the "baby boom" generation grows older and age-related disabilities increase. The present and future costs of disability to our nation are directly related to the degree of success we attain in reducing existing barriers, both structural and attitudinal, and in providing appropriate services to individuals with disabilities so that they may realize their full potential and become more independent and self-sufficient. If we are unsuccessful, dependency will increase and be accompanied by increasing costs for services and care as they become more custodial in nature.

The time is ripe for a careful assessment of disability-related expenditures and programs to see how effective they are in enhancing independence and equality of opportunity for people with disabilities. To this end, Congress has directed the National Council on the Handicapped to assess the extent to which Federal programs serving people with disabilities:

provide incentives or disincentives to the establishment of community-based services for handicapped individuals, promote the full integration of such individuals in the community, in schools, and in the workplace, and contribute to the independence and dignity of such individuals.

(Section 401 of the Rehabilitation Act of 1973, as amended)

In response to this mandate, the Council has engaged in a variety of efforts to collect pertinent information and viewpoints. It has:

- Examined current legislation and programs,
- Collected and analyzed information about exemplary programs,
- Consulted with experts on programs for persons with disabilities and consumers of disability services,
- Conducted special seminars and hearings, and
- Conducted forums with persons with disabilities and their families throughout the country.

Based upon such information, the Council selected ten topic areas of critical importance for in-depth analysis and recommendations. The resulting topic papers are presented in a separate appendix to this report. The major conclusions of the detailed topic papers, along with an overview of the population with disabilities and a listing and summary review of Federal programs providing services to individuals with disabilities, are presented in the body of this report.

The Population With Disabilities

The social category of people with disabilities encompasses a wide diversity of individuals. It includes the neighbor who has just had heart by-pass surgery, the boy down the street with cerebral palsy, the business executive who has been hospitalized for severe depression, the blind woman who works in the office downstairs, the mentally retarded landscaper at the local plant nursery, and last year's champion diver at the local high school who now uses a wheelchair because of a spinal cord injury.

Various estimates place the number of Americans with disabilities between 20 million and 50 million persons, with a figure of 35 or 36 million being the most commonly quoted estimate. A precise and reliable overall figure is not currently available, due to differing operational definitions of disability, divergent sources of data, and inconsistent survey methodologies, which together make it impossible to aggregate much of the data that are available.

Most existing studies of the disabled population employ one of two major approaches, each of which has its own shortcomings and limitations. The health conditions approach looks at all conditions or limitations which impair the health or interfere with the normal functional abilities of an individual. This approach usually tends to produce very large numbers of "disabilities," because of the inclusion of individuals with health problems that would not normally result in their classification as disabled or handicapped. For example, the Health Interview Survey conducted by the National Center for Health Statistics has estimated that there are over 160 million impairments and chronic conditions in the civilian noninstitutionalized population of the U.S. (Mathematica Policy Research, 1984, p. 3). These figures include large numbers of various types of circulatory conditions, respiratory conditions, digestive conditions, and skin and musculoskeletal conditions, not typically categorized as disabilities. Because of its focus on the medically oriented notions of health, the health conditions approach also does not provide adequate data on such conditions as learning disabilities and mental conditions.

The other major approach to disability data--the work disability approach--is also problematic. Such studies focus on individuals' reports that they have a condition that prevents them from working or limits their ability to work. The 1980 Census of Population, for example, contains a count of the number of persons age 16 or above who report the presence of a physical, mental, or other health condition which has lasted for six or more months that limits the kind or amount of work that they can accomplish at a job. Of the total 170 million people ages 16 and above who were counted in 1980, 22.7 million (or 13.3 percent) reported having work disabilities. Furthermore, two-thirds of these individuals (or 15. 1 million persons) report that their disability actually prevents them from working.

Such work disability figures probably provide a reasonably accurate gross estimate of the numbers of people of working age with disabilities. Such studies have their own shortcomings, however. They underestimate the numbers of people at lower age ranges-the 16 to 24 age group, for example-some of whom are not ready to join the work force and for whom the self-identification as either work disabled or not is often not meaningful. They also skew the population counted. Persons who are out-of-work or who are not seeking work have psychological motives for reporting themselves as having a work disability, whether or not they truly have a disability. Independent disabled persons with a strong work history and who are currently employed, on the other hand, will often refuse to categorize themselves as having a work disability, even if they have a significant disabling condition such as blindness, paralysis, or absence of a limb. For these reasons, work disability studies tend to underestimate the total numbers of people with disabilities, and to overestimate the unemployment and nonparticipation in the labor force rates of people with disabilities.

The Council has been urging the Bureau of the Census to incorporate into the 1990 Census some questions concerning the numbers of persons with various types of physical and mental impairments in the U.S., so that a more accurate profile of the population with disabilities can be obtained, thus providing a more reliable data base for Federal policy, planning, and service delivery. The Council will issue in the near future a monograph summarizing information from currently available sources and discussing the needs for additional disability data. For the purposes of the present report, the remainder of this section summarizes some pertinent statistical facts gleaned from existing studies that, in spite of the limitations previously noted, do provide a rough profile of the population of Americans with disabilities.

Correlation of Disability and Age

The incidence of disability increases dramatically with age. According to 1980 Census figures, 3.6 percent of all individuals ages 16-24 and 5.1 percent of the 25-34 age group report a work disability. These figures are quite low when compared to those for older age categories; 22.5 percent of all individuals ages 55-64, 32.2 percent of the 65-74 age group, and 48.5 percent of the 75 + age group report a work disability. Youths between the ages of 16 and 24 account for 1.4 million (or only 6 percent) of the total number who report work disabilities, while 4.8 million persons between the ages of 55 and 64 report disabilities, or 21.3 percent of the total. Nearly two-thirds of all persons who report work disabilities are in the age range of 55 and above. The strong correlation of disabilities with advancing age is illustrated in the Chart 1.

[Chart 1 not available.]

The Working Age Population With Disabilities

According to 1980 Census figures, some 12.9 million people between the ages of 16 and 64 reported a work disability. 4.2 million (or 32.2 percent) of the persons reporting a work disability were employed in the labor market at the time the Census was taken. The number of unemployed persons with a work disability amounted to 0.6 million. Almost 63 percent of the total number reporting disabilities were not in the labor force (i.e., neither employed nor seeking employment) at the time of the Census. Nearly one in five of all people not in the labor force report a work disability (19.1 percent), while only 4.4 percent of all who are employed report a work disability.

Census figures also indicate some correlation between work disability and poverty. Of the 12.9 million persons of working age reporting the presence of a work disability, 2.6 million (or 20.1 percent) have family incomes that are below the Federal poverty threshold. This is more than double the 9.1 percent rate of the general population which has a family income below the poverty line. People reporting work disabilities have a higher representation in the lower family income categories. Of all individuals below the poverty line, 17.7 percent claim to have a work disability. In contrast, only 6.4 percent of individuals with family incomes above twice the poverty line report a work disability. On the other hand, in spite of the overrepresentation of people who report work disabilities in the poverty category, nearly four out of five disabled individuals have family incomes that are above the poverty threshold.

Types of Disability

According to National Center for Health Statistics figures, in the civilian noninstitutionalized population of the U.S., there are 18.4 million people with orthopedic impairments or deformities; 17 million persons with hearing impairments; 8.2 million with visual impairments; 2.1 million with speech impairments; 26.8 million with arthritis; 24.3 million with hypertensive disease; 16.4 million with heart disease; 1.6 million missing extremities or parts of extremities; and 1.2 million who are partially or completely paralyzed (Mathematica Policy Research, 1984, p. 2). Another study found that there are approximately 5.7 million mentally retarded persons in the U.S., 2.4 million persons with epilepsy, 950,000 who have cerebral palsy, and about 95,000 with autism (EMC Institute, 1979).

Estimates are that some 3 million Americans have been diagnosed as having a severe mental disorder, with the number of individuals with chronic mental illness placed at between 1.7 million and 2.4 million, including 900,000 who are institutionalized (Goldman, Gattozzi, and Taub, 1981). The National Institute of Mental Health estimates, however, that fewer than 20 percent of Americans suffering from any mental disorder seek mental health services from mental health specialists or general physicians (NIMH, "Mental Health, United States 1985").

Nearly 6.5 million noninstitutionalized persons use one or more special aids in order to get around; these include: 645,000 people who use wheelchairs; 689,000 who use a walker; 613,000 who use crutches; 205,000 with an artificial leg or foot; 66,000 with an artificial arm or hand; 2,714,000 who use a cane or walking stick; 1,492,000 who wear special shoes; 398,000 who wear a leg or foot brace; and 1,004,000 who wear some other type of brace (Mathematica Policy Research, 1984, p. 41).

Statistics from the Office of Special Education and Rehabilitative Services, U.S. Department of Education, indicate that the numbers of "handicapped children" served under Federally assisted education programs in the 1981-1982 school year were as follows: children with specific learning disabilities--1,624,989; children with speech impairments--1, 136,309; mentally retarded--786,775; seriously emotionally disturbed--339,629; orthopedically impaired--57,967; deaf or hard of hearing--74,694; visually handicapped--29,174; deaf and blind--2,486; multiply handicapped (including those with severe and profound mental retardation)--71,289; and children with other health impairments--79,519 (Mathematica Policy Research, 1984, p. 101).

An Assessment Of Federal Laws and Programs Affecting Persons With Disabilities

Complexities, inconsistencies, and fragmentation in the various Federal laws and programs that affect Americans with disabilities might suggest that the United States has no coherent Federal policy on disability. Echoing a chorus of previous commentators, President Reagan has described "the patchwork quilt of existing policies and programs, " and has decried the fact that within the Federal "maze," programs often overlap or work at cross-purposes (President Reagan, Remarks on Signing Proclamation 513 1, Establishing the National Decade of Disabled Persons, Nov. 28, 1983). Programmatic inadequacies and inconsistencies do not mean, however, that there has been no clear national goal regarding citizens with disabilities. With surprising consistency, the branches of American Government, disabled individuals and their families, and service and consumer agencies have agreed that the overall goal of the nation in regard to persons with disabilities is to insure the rights of such individuals to equality of opportunity and to independence.

Confusion and inconsistency have resulted, not from lack of consensus about the goal, but from the historical and continuing failure to structure and administer some Federal laws and programs in such a way as to reflect and further the national goal. The nation's goal regarding citizens with disabilities may be clear and meritorious, but Federal programs and laws that should serve as paths toward this goal have often deviated or even retreated from it. A major purpose of this report is to suggest ways in which various Federal laws and programs can be redirected towards the national goal of assuring equal opportunities and promoting independence for Americans with disabilities.

Toward independence And Equality For Citizens With Disabilities

We hold these truths to be sacred and undeniable: that all men are created equal and independent, that from that equal creation they derive rights inherent and inalienable, among which are the preservation of life, and liberty, and the pursuit of happiness.

Thomas Jefferson, Original draft of the Declaration of Independence, 1776.

Consistent with their central importance to all Americans, the themes of equality and independence have been a major focus of the Nation's policy toward individuals with disabilities. Regarding Federal programs that assist individuals with disabilities, President Reagan has stated:

We believe equal opportunity, equal access, and greater economic independence must be more than slogans .... By returning to our traditional values of self-reliance, human dignity, and independence, we can find the solution together. We can help replace chaos with order in Federal programs, and we can promote opportunity and offer the promise of sharing the joys and responsibilities of community life.

(President Reagan, Remarks on Signing Proclamation 5131, Establishing the National Decade of Disabled Persons, Nov. 28, 1983)

In the proclamation establishing the National Decade of Disabled Persons, the President further declared:

We must encourage the provision of rehabilitation and other comprehensive services oriented toward independence within the context of family and community. For only through opportunities to use the full range of their potential will our disabled citizens attain the independence and dignity that are their due.

(President Reagan, Presidential Proclamation 5131, November 28, 1983)

Congress has also endorsed concepts of independence and equality of opportunity for persons with disabilities. It has declared:

It is of critical importance to this Nation that equality of opportunity, equal access to all aspects of society and equal rights guaranteed by the Constitution of the United States be provided to all individuals with handicaps; ... it is essential ... that all individuals with handicaps are able to live their lives independently and with dignity, and that the complete integration of all individuals with handicaps into normal community living, working, and service patterns be held as the final objective.

(29 U.S.C. section 701 Note (1976))

With broad bipartisan support, Congress has enacted and authorized funding for such programs as Vocational Rehabilitation and the Education for All Handicapped Children Act, which provide concrete initiatives enabling many persons with disabilities to achieve independence and access to opportunities. In 1978, as part of a broadened approach to rehabilitation, Congress established a program of "Comprehensive Services for Independent Living" to provide grants to the States for the establishment and operation of independent living centers (29 U.S. C. sections 796 and 796e).

In addition to the Executive and Legislative Branches of Government, the United States Supreme Court has recognized "the federal interest in developing the opportunities for all individuals with handicaps to live full and independent lives" (Community Television of Southern Cal. v. Gottfried, 459 U.S. 498, 508 (1983)).

In furtherance of these Federal interests in independence and equality of opportunity, Congress has directed the National Council on the Handicapped to perform the several assessments contained in this report assessments of the extent to which Federal programs: (a) provide incentives or disincentives to the establishment of community-based services for individuals with disabilities; (b) promote the full integration of such individuals in the community, in schools, and in the workplace; and (c) contribute to the independence and dignity of such individuals. The national goals concurred in by the President and the Congress have been clearly stated. The remainder of this report assesses the degree to which Federal programs conform to these objectives, and proposes modifications and redirections of such programs to correct those that are deviating from the Nation's goals regarding people with disabilities.

Current Priorities In Federal Programs

Congress has requested that the Council develop a listing, based upon annual expenditures and numbers of persons with disabilities served, of the major Federal programs assisting individuals with disabilities. Such a list is set out beginning on page 55 of this report. A total of 45 programs are listed and briefly described. From the detailed listing, statistical information about persons with disabilities, and the Council's analysis of Federal programs, a few general observations can be made.

1. Approximately two-thirds of working age persons with disabilities do not receive Social Security or other public assistance income.

Data contradict popular misconceptions concerning the proportion of people with disabilities who are unable to work and are dependent upon public assistance for support. A relatively small segment of the population with disabilities receives income support from programs such as Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) or other public aid programs.

According to 1980 Census figures, 38 percent of the noninstitutionalized working-age persons who reported a work disability were, nonetheless, employed in the labor market and did not receive Social Security or other forms of public assistance. Twenty-five percent did not work, but did not receive Federal Social Security or any other form of public assistance. Most such persons who neither worked nor received public aid presumably relied for support upon their families, spouses, pensions, private assistance programs, or other similar sources. Thirty-two percent of the working age individuals who reported a work disability did not work during the Census year and received Federal SSI or SSDI benefits or some other form of public assistance. (Another 5 percent worked at some time during the Census year and also received some form of public assistance income.) The interplay of work disability, employment, and public assistance is illustrated in Chart 2.

As Chart 2 indicates, roughly two-thirds of the population with disabilities did not receive SSI, SSDI, or any other form of public assistance during the Census year. Moreover, these percentages are only of the persons who identify themselves as having a work disability; many other Americans having conditions or impairments that would cause them to be termed "disabled" or "handicapped" in common parlance do not identify themselves as having a disability that affects their ability to work. Consequently, the actual percentage of persons with disabilities who are employed and self-supporting is quite probably higher, and the proportion of persons with disabilities who receive income support is probably even lower than indicated by the Census figures.

[Chart 2 not available.]

2. Federal disability programs reflect an overemphasis on income support and an underemphasis of initiatives for equal opportunity, independence, prevention, and self-sufficiency.

Although there are certainly gaps in some existing programs and some persons who need and are eligible for public disability benefits who do not get them, the Council believes that such shortcomings are overshadowed by a more serious misdirection of much of the aid that is provided, of the type and implications for those persons who are being served under current programs. Public assistance is surely necessary and proper to assist persons whose impairments. are severe and who are unable to be selfsufficient, but the Council believes that increased priority should be given to the removal of barriers and disincentives that prevent or inhibit people from moving off such income support benefits to achieve self-sufficiency and independence.

From the listing of Federal programs affecting persons with disabilities (pp. 55-65 of this report and foldout chart), it is readily apparent that most of the funds expended by the Federal Government on disability are for public assistance programs. The first six programs in order of expenditures, and ten of the first twelve, are public aid programs. Together, these ten large programs account for over 57 billion dollars in estimated FY 1986 outlays. Most of these programs are premised upon the dependency of the people who receive benefits, in the sense that they are not self-supporting. Eligibility is based upon inability to engage in substantial gainful activity, or significantly low income. In particular, SSI, SSDI, Medicaid, and Medicare require applicants with disabilities to demonstrate that they are not self-supporting.

The Council does not suggest that such public assistance programs be preemptively terminated or cut back, nor that individuals appropriately receiving such benefits be "pushed off the rolls." The Council proposes, rather, that a redirection of certain Federal programs, as described in its detailed recommendations in this report, can reduce the barriers to opportunity and independence for people with disabilities, allowing many more people with disabilities to remove themselves from Federal aid programs by achieving self-sufficiency and independence.

3. More emphasis should be given to Federal programs encouraging and assisting private sector efforts to promote opportunities and independence for individuals with disabilities.

In recent years, there have been some promising programs in the private sector to remove barriers and achieve participation by persons with disabilities. Many private companies have begun programs to hire and advance employees with disabilities. In 1985, the President's Committee on Employment of the Handicapped and the Dole Foundation published a booklet, Disabled Americans at Work, that chronicles efforts of many of America's major corporations to train and employ workers with disabilities.

Business leaders such as David T. Kearns, the president of Xerox Corporation, have spoken out in favor of "full participation" for citizens with disabilities, arguing that business has an economic stake in helping individuals with disabilities become employed and in taking advantage of the pool of potential talent that they represent (Gatty, 1981, p. 3). E. 1. du Pont de Nemours and Company has made a point of recruiting employees with disabilities and has monitored their numbers and progress in the company. DuPont has achieved a reputation as an exemplary employer of people with disabilities, and the company's reports are replete with examples of successful case stories (DuPont, 198 1, pp. 10- 16). In addition to Xerox and DuPont, other major companies making similar efforts to promote the employment of persons with disabilities include AT&T; the Prudential Insurance Company; Sears, Roebuck and Company; Levi Strauss and Company; IBM; and Control Data Corporation, to name but a few (Gatty, 198 1, pp. 30-35). Recently, Levi Strauss and McDonald's have been among the companies whose national television advertising campaigns have featured people with disabilities portrayed in a natural, positive context.

A few Federal programs have encouraged and supported such private sector efforts. Some successful Federal/State rehabilitation agencies have worked very closely in a cooperative partnership with private businesses to provide training and employment opportunities for individuals with disabilities. The Job Accommodation Network (JAN), operated as a joint venture of the President's Committee on Employment of the Handicapped, the National Institute of Handicapped Research, the Rehabilitation Services Administration, and the West Virginia University Rehabilitation Research and Training Center, is another example of a Federally initiated program that supports private sector efforts to increase the opportunities available to citizens with disabilities. JAN provides a computerized system for obtaining information about practical accommodations that employers can make to enhance job opportunities for employees with disabilities.

Congress has provided some limited financial incentives to private businesses for removing barriers and increasing opportunities for individuals with disabilities, through such programs as the Targeted Jobs Tax Credit (which provides a tax credit for employing workers with disabilities) and Section 190 of the Internal Revenue Code (which allows a tax deduction for the removal of architectural barriers). Congress has also created the Projects with Industry program, which in 1984 spent nearly 14 million dollars through cooperative agreements with business and industry to develop job opportunities for people with disabilities in the competitive marketplace (at an average cost per actual placement of about $1,500).

In spite of these few examples, however, an examination of the major Federal disability programs reveals very little effort to encourage, expand, or strengthen Federal/private sector partnerships that address disability problems. Federal efforts to assist individuals with disabilities should increase their support for promising private sector programs and cooperative governmental/private partnerships that promote increased opportunities and independence for people with disabilities.

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Analysis Of Federal Programs In Specific Topic Areas With Legislative Recommendations

The Council has focused its attention upon ten major topic areas of Federal programs affecting people with disabilities. The topic areas are:

• Equal Opportunity Laws


• Employment


• Disincentives to Work Under Social Security Laws


• Prevention of Disabilities


• Transportation


• Housing


• Community-Based Services for Independent Living


• Educating Children With Disabilities


• Personal Assistance: Attendant Services, Readers, and Interpreters


• Coordination

Each of these topics has been the subject of detailed discussion and analysis in the individual topic papers contained in the separate Appendix section of this report. They represent areas of critical importance to people with disabilities in which current Federal programs fail to adequately promote national goals regarding individuals with disabilities, and in which redirection or alternative approaches are called for. The topic areas were selected in the interest of producing a manageable and timely report to the President and the Congress with concrete legislative recommendations, but the Council is quite aware of many other important issues affecting people with disabilities that will command the Council's attention in the future and that may call for legislative solutions. The Council expects to issue subsequent reports to address topics and issues affecting classes of people with disabilities, as well as to monitor the implementation of the recommendations made herein.

The major conclusions and legislative recommendations of the Council regarding the ten topic areas follow.

Equal Opportunity Laws

If the goals of independence and access to opportunities for people with disabilities are to be achieved, it is essential that unfair and unnecessary barriers and discrimination not be allowed to block the way. Accordingly, the President and the Congress have called upon our Nation to guarantee equal opportunities for citizens with disabilities. Congress has enacted several laws prohibiting discrimination against people with disabilities. One of the best known of such laws is Section 504 of the Rehabilitation Act of 1973, as amended, which prohibits discrimination on the basis of handicap in programs and activities conducted by the Federal Government or conducted by recipients of Federal financial assistance. Section 503 of the Rehabilitation Act requires Federal Government contractors to take "affirmative action" to employ and advance workers with disabilities. Section 501 places a similar "affirmative action" requirement upon Federal Government employment. Several other Federal laws prohibit discrimination on the basis of handicap in certain other contexts.

A problem with existing laws, however, is that their coverage is not nearly as broad as laws prohibiting discrimination on the basis of race, color, sex, religion, or national origin. Many types of activities, such as employment by agencies engaged in interstate commerce, public accommodations, and housing, are covered by laws prohibiting other types of discrimination, but not by laws prohibiting handicap discrimination. Because of their narrow coverage, handicap nondiscrimination laws fail to serve the central purpose of any human rights law-providing a strong statement of a societal imperative. An adequate equal opportunity law for persons with disabilities will seek to obtain the voluntary compliance of the great majority of law-abiding citizens by notifying them that discrimination against persons with disabilities will no longer be tolerated by our society.

Other problems with current statutes addressing discrimination on the basis of handicap include certain difficulties in the statutory language, the lack of specificity or standards concerning nondiscrimination, and inconsistencies in interpretation and application of the statutes.

Recommendations

1. Congress should enact a comprehensive law requiting equal opportunity for individuals with disabilities, with broad coverage and setting clear, consistent, and enforceable standards prohibiting discrimination on the basis of handicap.

Such a statute should be packaged as a single comprehensive bill, perhaps under such a title as "The Americans with Disabilities Act of 1986." The recommendations which follow spell out more specifically the components which such a bill should contain in order to create a comprehensive and effective equal opportunity law for individuals with disabilities.

2. The equal opportunity law for persons with disabilities should prohibit discrimination on the basis of handicap by:

1. The Federal Government, all of its agencies and departments, and the United States Postal Service.


2. All recipients of Federal financial assistance, with coverage of all operations of the recipient and not just a particular program or activity.


3. Federal contractors and subcontractors and Federal licensees.


4. All employers engaged in an industry affecting commerce who have fifteen or more employees; employment agencies; and labor unions.


5. All sellers, landlords, and other providers of housing covered by Title VIII of the Civil Rights Act of 1968.


6. All public accommodations covered by Title II of the Civil Rights Act of 1964.


7. All persons, companies, and agencies that engage in the business of interstate transportation of persons, goods, documents, or data.


8. All persons, companies, and agencies that make use of the mails or interstate communications and telecommunications services for the business of selling, arranging, or providing insurance.


9. i. States, counties, and local governments, pursuant to Congressional authority to enact legislation abrogating the States' immunity under the Eleventh Amendment in order to enforce the Fourteenth Amendment guarantee of Equal Protection of the Laws.

3. The law should provide a clear definition and standards for applying the prohibition of discrimination on the basis of handicap.

The statute should straightforwardly prohibit "discrimination on the basis of handicap," without establishing any eligibility classification for the coverage of the statute. Discrimination on the basis of handicap should be broadly construed to apply the requirements of the statute to all situations in which a person is subjected to unfair or unnecessary exclusion or disadvantage because of some mental or physical impairment, perceived impairment, or history of impairment. Discrimination should be defined to include: a) Intentional exclusion; b) Unintentional exclusion; c) Segregation; d) Unequal or inferior services, benefits, or activities; e) Less effective services, benefits, or activities; and f) The use of screening criteria with a disparate impact upon individuals with disabilities that do not correlate with actual ability. The nondiscrimination requirement should expressly include a duty to make reasonable accommodations, which should be defined as providing or modifying devices, services, or facilities, or changing practices or procedures in order to allow a particular person to participate in a particular program, activity, or job. The duty not to discriminate should also include an obligation to remove architectural, transportation, and communication barriers, including meeting the accessibility requirements recommended below. In addition, there should be a requirement of eliminating discriminatory qualifications standards, selection criteria, and eligibility requirements, with a delineation of the standards and legal tests to be used to determine when such qualifications, criteria, and requirements constitute discrimination. In addition, a requirement of outreach and recruitment efforts should be explicitly established; the focus of such efforts should be upon people with serious disabilities, such as the Equal Employment Opportunity Commission's current listing of "targeted disabilities. "

4. The law should delineate specific enforcement standards, procedures, and timelines for the implementation of equal opportunity requirements.

The agencies responsible for developing regulations implementing the equal opportunity law for people with disabilities should be clearly designated, and timelines established for the issuance, after public comment, of such regulations. The Architectural and Transportation Barriers Compliance Board should be directed to establish binding minimum guidelines for architectural, transportation, and communication accessibility, as discussed below in Recommendation 5. Consistent with such minimum guidelines, the Department of Housing and Urban Development should be directed to develop appropriate regulations concerning housing opportunities (for further discussion, see the Council's recommendations on Housing); the Department of Transportation should be directed to develop regulations for mass transit, air travel, and other modes of transportation covered by the law (for further discussion, see the Council's recommendations on Transportation); the Federal Communications Commission should be directed to promulgate regulations governing its licensees; and other agencies should be directed to develop regulations for the areas of their responsibility, including the programs and activities they conduct, those they license, and those for which they provide financial assistance. The Equal Employment Opportunity Commission should expressly be charged with the development of regulations governing Federal employment and for setting standards for all other employment covered by the law. An administrative enforcement process should be provided for individuals who believe that their rights under the law and regulations have been violated. Successful complainants should be entitled to injunctive relief, monetary damages, attorneys fees, and back pay as necessary to remedy the discrimination to which they have been subjected. A private right of action in Federal court should be established for complainants if administrative enforcement has not occurred after a specified amount of time (e.g., 60 or 90 days), and at the completion of the administrative decision-making and appeals process. The law should authorize the imposition of fines or the cutoff of Federal finds (including both grants and contracts) if there is a showing of discrimination in an appropriate administrative or judicial proceeding; such fines or funding cutoff should continue until the discrimination is corrected or discontinued.

5. The Architectural and Transportation Barriers Compliance Board should be given the authority and responsibility to issue minimum guidelines for universal accessibility and other standards for the removal of architectural, transportation, and communication barriers in facilities, vehicles, programs, and activities covered by the equal opportunity law for people with disabilities.

This recommendation is intended to correct the problems with the language of Section 502 of the Rehabilitation Act of 1973 as currently worded that have left questions about the extent of the authority of the Architectural and Transportation Barriers Compliance Board (ATBCB) to set minimum guidelines regarding transportation and communication barriers. It would also expand the Board's authority commensurate with the expanded coverage of the equal opportunity law recommended in this report. Provisions establishing ATBCB should also be amended to provide that public members of the Board shall continue to serve at the expiration of their terms until their successors have been appointed and are ready to serve.

6. The law should also:

1. Direct the Federal Government to use its leverage as a consumer of goods and services to require that businesses and companies _from which it rents or makes purchases to make goods, services, and facilities usable by individuals with disabilities;


2. Apply to discrimination in medical services;


3. Include an enforceable Bill of rights for Persons with Disabilities;


4. Provide for the dissemination to persons with disabilities of information concerning their rights;


5. Provide a private right of action against Federal contractors and subcontractors who engage in discrimination against people with disabilities; and


6. Provide an expanded Protection and Advocacy System in each State to protect and advocate for the rights of individuals with all types of disabilities, regardless of age of onset.

Employment

As for most other Americans, a major prerequisite to economic selfsufficiency for individuals with disabilities is a job. Employment is an essential key to successful adult integration into community life. Various forms of work are associated with greater independence, productivity, social status, and financial security. Success and quality of life are often measured in terms of paid employment.

Studies indicate that only one-third of youths with disabilities leaving school graduate to a job or some form of advanced education. The absence of a systematic vocational transition process for youths with disabilities significantly contributes to the unemployment rates of persons with disabilities. Of the approximately 12.9 million working age persons reporting a work disability, only 4.2 million (or 32 percent) were working at the time of the 1980 Census.

Reasons for high unemployment and underemployment among persons with disabilities include the lack of an effective transition process from school to work for youths with disabilities; societal attitudes which cause employers to discriminate against persons with disabilities; physical and communication barriers in buildings, transportation, and worksites; and the lack of appropriate training opportunities for persons with disabilities.

State/Federal vocational rehabilitation agencies, projects with industry, return-to-work programs (established by some businesses), and selective hiring authorities within the Federal Government have increased employment opportunities for persons with disabilities. Although programs such as these encourage education and employment, they are inadequately meeting the goal of successfully integrating persons with disabilities in schools, workplaces, and the community.

To increase employment opportunities for people with disabilities, programmatic changes are needed in several areas.

Recommendations

Transition

1. Congress should direct the Department of Education to designate the State educational agency as the lead agency to start, develop, and carry out the transition planning process.

This Nation has invested heavily in special education; to capitalize on this investment, it is necessary for the Federal Government to assure that each youth in a special education program be guaranteed a well-developed, organized and coordinated transition process from school to work.

The regulations accompanying Public Law No. 94-142, the Education for All Handicapped Children Act, should be modified to make the State education agency responsible for the transition process. The State and local education agencies should be responsible for initiating and carrying out the transition process, including contacting the appropriate personnel in regular and special education, vocational education, vocational rehabilitation, community colleges, developmental disabilities and other agencies from whom each student receives services. To support this effort, the regulations should set the following minimum guidelines:

• The planning process should begin no later than ninth grade, and should include the active involvement of parents and students.


• A formal written plan with long-and short-term goals and objectives that include functional skills for employment and daily living is to be prepared and updated annually by the lead agency in consultation with the student, parents, and other involved agencies. Parent and student approval of the plan should be required in writing.

Vocational rehabilitation counselors and education coordinators (including general, special, and vocational education) should be actively involved in the transition process. In addition to prescribing such participation, the regulations should provide minimum standards for the training of vocational rehabilitation counselors and education coordinators in regard to the transition process. Training should focus on strategies for involving employers and families in the transition process, as well as eligibility requirements, and pertinent special education and vocational education techniques. These training requirements, coupled with the State education agency taking the lead for transition services (Recommendation 1, above), will establish the foundations for a coordinated transition process. These recommendations can be implemented without additional expenditures of public funds.

Supported Work

3. Congress should amend the Rehabilitation Act to add a Title expressly authorizing programs of supported work for persons with severe disabilities who can be competitively employed with the assistance of such a program.

The term "supported employment" means paid employment which: a) is for persons with severe disabilities (such as developmental disabilities, chronic mental illness, and severe physical disabilities) for whom competitive employment at or above the minimum wage without support is unlikely, and who, because of their disabilities, need intensive ongoing support to perform in a work setting; b) is conducted in a variety of settings, including worksites in which persons without disabilities are employed; and c) is supported by any activity needed to sustain paid work by persons with disabilities, including supervision, training, and transportation.

If supported work programs were available, a large number of severely disabled persons residing in residential facilities could return to the community and become gainfully employed. Some pertinent figures indicate:

• 499,169 persons with mental illness were served in 277 state hospitals for $4.5 billion (Goldman, Gattozzi, and Taube, 1981).


• 243,669 persons with mental retardation were served in 15,633 residential facilities for $5.9 billion (Smith, 1984).


• 1,396,132 elderly and physically disabled persons resided in 23,065 nursing homes (Sirrocco, 1983) and other long-term care facilities at a cost to Medicaid of $12.4 billion (National Study Group on State Medicaid Strategies, 1983).

Funding for supported work programs will provide persons with severe disabilities an opportunity to work toward independence by becoming taxpayers rather than remaining dependent upon other taxpayers. Implementing this recommendation should not entail expenditures of additional public funds. For example, the Medicaid payment process could be modified to allow the funds a disabled person receives while in an institution to follow or accompany the person to the community to pay for educational and vocational services including supported work. Medicaid payments for individuals employed in supported work situations should be much less than if such people remained in institutions. Likewise, the Title XX program funds day activity programs for severely disabled persons not eligible for vocational rehabilitation services. Some portion of funds from this program should be re-directed to provide supported work services for this population, since studies show that many severely handicapped individuals are capable of productive work if given appropriate support services. This change would not involve an increase in funds or an increase in persons served. Rather, day activity programs would simply be encouraged to provide vocational services as part of their programming.

Federal Support for Private Sector Initiatives

4. Congress should extend and expand the Targeted Jobs Tax Credit Program (Deficit Reform Act of 1984).

The Targeted Jobs Tax Credit (TJTC) Program should be made permanent with greater first year tax credit allowances. The TJTC Program should expressly authorize employer tax credits for: reemploying persons who become disabled on the job, hiring disabled persons in higher than entry level positions, and assisting disabled employees who must relocate. Credits should also be allowed for training disabled employees in high demand technical areas.

The existing TJTC Program gives employers a financial incentive to provide disabled job seekers an opportunity to demonstrate their capabilities. The recommendation to extend and expand this program should result in a net benefit to the Federal Treasury because the taxes paid by disabled employees assisted by the program should greatly exceed the tax credits allowed to employers. In FY 1984, according to the Department of Labor, 38,263 disabled persons were certified under the TJTC Program.

5. Congress should make Section 190 of the Internal Revenue Code permanent and expand it to a maximum amount of $75,000 per year

Section 190 encourages accessibility and increases employment opportunities for persons with disabilities by allowing a tax deduction for the removal of architectural barriers. This incentive encourages employers to hire persons with disabilities and elderly people for jobs suited to their needs and talents. Before these individuals can become frill working members of society, the workplace must be accessible.

6. Congress should develop innovative and effective incentives to promote the establishment of return-to-work programs.

Incentives should be developed to promote the establishment of return-to-work programs by employers. Return-to-work programs provide early intervention services (counseling, job analysis, etc.) for employees who may become disabled by an injury or illness.

According to Hood and Downs (1985), on-job accidents burdened the 1982 economy with an estimated $31.7 billion in direct and indirect costs. After adding the $24.9 billion cost of off-job accidents (about one-third of which was borne by employers), the 1982 total cost of accidents was $56.6 billion. During that year an estimated 100 million lost work days resulted from disabling injuries and another 40 million lost days were caused by disabilities from prior years.

Effective return-to-work programs will reduce the cost of health and income maintenance programs by reducing the number of persons with disabilities who are not working. Effective return-to-work programs have been established by businesses such as Minnesota Mining and Manufacturing Company, Eastman Kodak, and Control Data.

Job Development and Placement

7. Congress should support the development of area model centers on employment for persons with disabilities.

Model centers on employment for persons with disabilities should be established to demonstrate and disseminate information about innovative or "cutting edge" employment strategies. The functions of the centers would include: job analysis; job restructuring; dissemination of state-of-the-art information on employment strategies, vocational evaluation, models for coordination of special education, rehabilitation, and vocational education, job development, and placement.

These model centers could be developed through a cooperative effort of the Department of Labor, the National Institute of Handicapped Research, the Rehabilitation Services Administration (RSA), State and local governments, and the private sector, with RSA having the lead role in establishing and operating the centers.

Job Training

8. Congress should amend the Job Training Partnership Act (JTPA) to eliminate the income eligibility requirement for persons with disabilities and to increase the representation of persons with disabilities on Private Industry Councils.

Although the current JTPA legislation helps to increase the employment and decrease the dependency of disabled persons, it has shortcomings. Disabled persons are not being adequately served by JTPA because unlike its predecessor, the Comprehensive Employment and Training Act, JTPA does not consider a person eligible because his/her handicap constitutes a barrier to employment. Income eligibility criteria must be satisfied in order to receive services. In addition, few individuals who understand the needs of persons with disabilities are represented on the Private Industry Councils that direct local JTPA programs. For this legislation to be of substantial benefit to disabled persons, the Department of Labor should ensure that:

• The State Job Training Coordination Councils and the local Private Industry Councils include people who understand the needs, capacities and capabilities of disabled persons, particularly including persons who themselves have disabilities.


• State and local plans have provisions for projects that address the needs of disabled persons.

Councils place a priority upon and develop methods for achieving the participation of disabled persons in their programs.

• JTPA programs have vocational education and vocational rehabilitation components.


• Parents and educators are informed of the programs available for people with disabilities.


• Data is collected on the number and percentage of disabled persons served.

Disincentives to Work Under Social Security Laws

The recommendations in the previous section focused upon increasing the effectiveness of Federal efforts to secure employment opportunities for individuals with disabilities, thus increasing the chances for such individuals to achieve independence and economic self-sufficiency. Some Federal programs under current Social Security laws not only fail to promote employment and independence for citizens with disabilities, but actually penalize and discourage people with disabilities if they seek to become employed. These programs-Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid and Medicare-provide many severely disabled people with basic life necessities. Consumer and service provider experiences indicate, however, that some program provisions encourage dependence and discourage gainful employment.

Currently the Social Security Administration's (SSA) process for determining eligibility for SSI or SSDI income benefits begins with a medical evaluation of the individual's disability. Only in cases in which the disability is not on the SSA "medical list" (e.g., blindness, deafness, spinal cord injuries), does the eligibility determination include both a medical diagnosis and an assessment of vocational potential. This determination process can sometimes result in the automatic award of benefits to individuals with clearly defined medical disabilities who have significant vocational potential and should be able to work.

A major disincentive to work for many current SSI and SSDI recipients is that employment in many entry level and low paying service jobs will often result in reduced income and the loss of medical and other benefits. The Council also finds evidence that many people with preexisting medical conditions cannot obtain adequate health insurance at an affordable cost. This problem creates an incentive to enter public aid programs since the medical costs associated with some disabling and preexisting conditions exceed the working individual's ability to pay.

Recommendations

1. Congress should amend the Social Security Act to make eligibility for SSI and SSDI programs dependent upon the presence of a severe medical disability and a functional assessment to determine vocational potential whenever deemed appropriate.

Whenever the vocational potential of a working age applicant is at issue, applicants who are not terminally ill should be required to undergo a functional vocational assessment that establishes that they will have substantial difficulty working because of severe vocational limitations of an ongoing nature. Individuals with disabilities who are refused SSI and SSDI income support benefits because they are determined to be able to work should be offered vocational rehabilitation services.

This recommendation is designed to change the focus of disability determinations from a purely medical standard to one that assesses the full range of factors that affect the ability to work of persons with disabilities. It narrows the definition to prevent those who have a medical impairment but are able to work from automatically becoming eligible for income support benefits.

To implement this recommendation, the Social Security Administration should be charged with using its demonstration authority to develop procedures for conducting functional vocational assessments and for assuring that adequately trained people are available to carry out the assessments. For instance, SSA could contract for this service with independent agencies, such as independent living centers, vocational rehabilitation agencies, or colleges and universities. SSA should also enter into cooperative agreements with State vocational rehabilitation agencies to assure that individuals who are refused benefits because of their vocational potential are not then refused vocational rehabilitation services. Applicants should not be required to undergo a second, duplicative vocational assessment if they are referred for vocational rehabilitation services.

2. Congress should amend the Social Security Act to assure that SSI and SSDI recipients who become gainfully employed are permitted to retain benefits and have access to medical insurance in circumstances where the loss of such benefits would substantially negate the income they might earn.

Three steps should be taken to implement this recommendation. First, Section 1619(a)&(b) of the Social Security Act, which authorizes continuing cash benefits and Medicaid coverage to working SSI beneficiaries, should be made permanent, thereby removing the uncertainty associated with the temporary nature of Section 1619.

Second, Section 1619 provisions should be extended to SSDI recipients. The formula for determining benefits when earnings increase may need to be modified since some SSDI recipients receive comparatively high benefit payments. If the Federal break-even point for SSI were used for SSDI, benefits might reach inappropriately high levels.

Third, Medicare and Medicaid coverage should be made available on a sliding fee scale that reflects income to working SSDI and SSI beneficiaries who cannot obtain private health insurance coverage because of their disabilities. Employers should be required to contribute an amount equal to that contributed to other employee health insurance plans. Alternatively, cooperative programs with insurance programs might be developed in which Medicaid would pay disability-related medical expenses and the private insurer would be responsible for other medical expenses.

3. Congress should direct the Health Care Financing Administration to study and recommend cost-effective methods for providing health insurance coverage to persons with preexisting conditions who cannot obtain adequate health insurance coverage from private insurers at affordable rates. The study should be conducted in consultation with the National Council on the Handicapped, and findings and recommendations should be reported in hearings before Congress within two years of the date of enactment of this provision.

Some disabled workers are forced into income support programs primarily because they cannot obtain private medical insurance coverage due to the preexisting conditions of disability. Persons with disabilities who are self-employed often have great difficulty because they rarely have access to a group insurance program. If a disabled worker's income is not sufficient to cover both basic living and medical expenses, the worker may be forced into a public assistance program in order to obtain the needed medical benefits.

The Council believes that the availability of health insurance coverage for people with disabilities is an important incentive to employment, and that the States may be able to provide leadership in this area. Innovative programs in place in those States that provide health insurance coverage for uninsured populations should be examined, and a variety of funding and insurance strategies should be considered.

Considerable savings can be realized by removing disincentives to work in current programs: Medicaid benefit payments often decrease when a person with a disability is employed. Income support payments will always be reduced as recipients of income benefits become gainfully employed and income support benefits are reduced or ended. Although there is no precise method of estimating expected costs and benefits, the Congressional Budget Office has informally estimated that no increases in costs are associated with a permanent extension of Section 1619. Other authorities have projected considerable cost savings. For instance, in August of 1984, 6,000 SSI recipients earned over $713 a month, the break even point for going off of SSI payments. If permanent, continued Medicaid coverage encouraged these individuals to leave the SSI program, a savings of $324 a month per individual in SSI payments would result in a projected reduction in cash benefits of $23 million per year (Bartlett, 1985). The advantages to society are even greater if personal benefits to the individual, such as increases in self-esteem and mental and physical health, and economic benefits to the community, such as the purchase of goods and services, are considered.

Prevention of Disabilities

A Federal initiative to prevent disability could substantially reduce the health care costs and human suffering associated with the high incidence of disability in this country. Effective preventive measures would reduce the costs of disability and health care for Americans, reduce Federal spending for disability in the near future, and decrease the incidence of disability for future generations.

Studies indicate that preventive measures would greatly reduce the number of new additions to the disabled population. For example, an estimated 50% of hearing impairments could be prevented through the use of inexpensive preventive strategies. A substantial percentage of the serious birth defects and illness experienced each year by approximately 250,000 infants could be prevented through effective prenatal and infant care. Most of the estimated 59 million nonoccupational injuries that occurred in 1981, including the 27 million accidents that occurred in and around the home, could have been prevented. Prevention is inexpensive and painless when compared to the high cost and suffering associated with preventable illnesses and accidents.

Our Nation has the knowledge, technology, and resources to mount an effective and successful national program for the prevention of disabilities. Preventive action could substantially reduce disabilities resulting from: a) infant birth disorders, illness, and injuries; b) vehicular accidents; c) heart disease and stroke; d) occupational accidents and hazards; e) home, recreational and pedestrian accidents; f) genetic disorders; g) infectious diseases; h) chronic diseases; i) toxic substances in the environment; j) noise pollution; k) radiation; and 1) violence. Preventive efforts could also reduce the unnecessary secondary disabilities or exacerbation of impairments often experienced by people with disabilities. In addition, Americans should be encouraged to use healthy lifestyle behaviors which prevent certain types of diseases and disorders.

The Council urges the Federal Government to mount a national program for the prevention of disability by providing leadership and by coordinating Federal prevention-related programs.

Recommendations

1. Congress should enact a law related to prevention entitled "The Prevention of Disabilities Act."

The Act should have three chief provisions: a) authorize the National Council on the Handicapped to establish policy and goals for a National Plan on the Prevention of Disabilities, and to review and make recommendations regarding implementation of the Plan; b) require the Office of Disease Prevention and Health Promotion (Department of Health and Human Services), working with the National Council on the Handicapped and other appropriate Federal agencies, to oversee the development and implementation of the National Plan; and c) authorize a small grant program to support the development of coordinated, comprehensive, and effective prevention programs by States and local communities. The grant program should be administered by the Assistant Secretary of Health. Implementation of this recommendation should require only a small number of additional staff and some operational funding to support the implementation of Parts a and b above. In addition, the small grant program (Part c) would require only minimal funding support over a five year period.

2. Congress should provide appropriate levels of funding for special program priorities related to disability prevention.

The appropriation of funds for specific program priorities should include: a) prenatal care through the Maternal and Child Health Care program, Medicaid, and the Women, Infants, and Children (WIC) program (at no less than FY 84 levels); b) preschool educational services through block grants to State educational agencies; c) educational programs for professional personnel, parents and children in disability prevention; d) dissemination of information about disability prevention to minority groups, children, and adolescents through public education programs and curriculum units about prevention in elementary and secondary schools; and e) development of methods for preventing secondary disability among those already disabled.

3. Congress should direct its Office of Technology Assessment to conduct a study of the status of primary and secondary prevention of disability in the United States, and to submit a report of its findings two years after the issuance of the National Plan on the Prevention of Disabilities.

The authorization would provide for an objective, independent assessment through the Office of Technology Assessment of the status of primary and secondary prevention efforts in the United States, and of compliance with the National Plan.

Transportation

Another prerequisite for achieving equal opportunities and independent living for persons with disabilities is transportation-the ability to get to and from work, stores, medical facilities, recreational and social settings, and other destinations-to move about the local neighborhood, the city, the state, and the world. The Urban Mass Transit Act, as amended in 1970, established services for disabled people as a basic element of Federal transportation policy-it states that disabled people have the same right to use public transportation as nondisabled persons. Specific language promoting this principle was also included in the Federal-Aid Highway Act of 1973. Since 1970, the nation has begun implementing accessible transportation systems in compliance with this policy.

Approximately 7.4 million persons are transportation-handicapped, according to a national survey conducted by the Department of Transportation. Transportation handicaps vary, ranging from difficulty climbing stairs, reading signs, hearing announcements, or understanding transit information, to the use of a wheelchair. On the average, persons with transportation handicaps have lower incomes than other Americans, and are more dependent on public transportation to conduct the business of their daily lives. In fact, a major impediment to employment for people with disabilities is their inability to reach the job site. Increasing job opportunities through improved access to transportation would bring far-reaching economic benefits to disabled individuals and to society.

Regulations designed to implement legislative requirements for accessible urban transportation systems have changed several times during the past 15 years. They have ranged from minimal "special efforts" and "local options" to requirements based on Section 504 of the Rehabilitation Act of 1973 for almost immediate full accessibility. Current regulatory efforts have begun to concentrate on setting performance criteria for the provision of services to disabled persons. This is intended to assure that services available to disabled persons are equivalent to those available to nondisabled passengers. Specifics of system design would be determined at the local level in response to local conditions and community needs with significant input from disabled and elderly individuals.

The Council has reviewed the implementation of the Nation's transportation policy. Its conclusion is that we are far short of a truly accessible system. A 1982 survey conducted by the General Accounting Office indicated that nearly three-fourths of the urban rail stations surveyed are almost totally inaccessible to wheelchair users. The same study determined that one-third of the transit systems offering fixed-route bus service did not have a single bus with a lift. A 1985 American Public Transit Association (APTA) fact sheet reported that 76% of the 49,000 buses in use in this country are not accessible.