ED 301 021

TITLE

INSTITUTION

REPORT NO

PUB DATE

NOTE

AVAILABLE FROM

PUB TYPE

EDRS PRICE

DESCRIPTORS

IDENTIFIERS

ABSTRACT

DOCUMENT RESUME

EC 211 768

On the Threshold of Independence. Progress on

Legislative-Recommendations from "Toward

Independence." A Report to the President and to the

Congress of the United States.

National Council on- the Handicapped, Washington,

DC.

ISBN-0-936825-01-4

an 88

117p.; For related document, see EC 211 756.

National Council on the Handicapped, 800 Independence

Ave., S.W., Suite 814, Washington; DC 20591.

Repc.rts - Descriptive (141) -- Viewpoints (120)

MF01/PC05 Plus Postage.

Adults; Agency Cooperation; Community Services;

Coordination; Demography; *Disabilities; Elementary

Secondary Education; Employment Opportunities; Equal

Opportunities (Jobs); *Federal Legislation; *Federal . Programs; Housing; *Normalization (Handicapped);

Preschool Education; Prevention; *Public Policy;

Special Education; Transportation

*Independent Living; Social Security Benefits

This report describes progress made toward increasing

the independence and quality of life for persons with disabilities

since the National Council on the Handicapped's 1986 report "Toward

Independence." Of the 45 legislative recommendations proposed in the

1986 report, 80 percent have been either partially or fully

accomplished. Twenty-one statutory provisions have-been enacted into

law, in addition to eight bills introduced in Congress but not yet

enacted. CensUs data and results of Harris polls have made important

contributions to the database of reliable statistics on numbers and

types of people-with disabilities, age, income, education,

employment, social life and leisure, etc. Major achievements are

presented in 10 topic areas, including 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 through attendant services,

readers, and interpreters; and coordination of service delivery.

Twenty-two references are listed. (JDD)

***********************************************************************

* Reproductions supplied by EDRS are the best that can be made *

* from the original document. * ***********************************************************************
60

N

DEPARTNENTOli EDUCATION

-Orrice of Educational Reaerch and Improvement EDUCATIONAL RESOURCES INFORMATION

CENTER (ERIC) A....This document hail been reproduced as

received from the person or organization

originating it

0 Minor changes have been made to improve

reproduction quality.

Points of view or opinions stated inthis docu ment do not necessanly represent official OEM position or policy.

National Council

on the Handicapped

A Report to the President

and to the Congress

of the United States

January 1988
On

11.111111 AIM&

Progress on Legislative

Recommendations from

Toward Independence

NAtional Council

on the Handicapped

A Report to the President

and to the Congress

of the United States

January 1988
On the Threshold Of Independence:

Progress on Legislative Recommendations From Tou 2rd Independence

Library of Congress Catalog Number 87-619903

ISBN 0-936825-01-4

National Council on the Handicapped

800 Independence Avenue; S.W.

Suite 814

Washington, DC 20591

202-267-3846 (Voice)

202-267-3232 (TDD)

Publication date: January, 1988

Printed in the United States of America

The views contained in this report do not necessarily represent those of the Admini- stration, as this document has not been subject to the A-19 Executive Branch review

process.
Contents

Letter of 'll'ansmittal

Description of the National Council on the Handicapped vii

Council and Staff Members ix

Acknowledgments xi

Executive Summary xiii

Foreword xvii

I. Introduction 1

II. Recent Data and Trends 9

III. Analysis of Progress Made In Specific Topic Areas

Since the Publication of Toward Independence

A. Equal Opportunity Laws 19

B. Employment 45

C. Disincentives to Work Under Social Security Laws 55

D. Prevention of Disabilities 59

E. Transportation 63

F. Housing 71

G. Community-Based Services For Independent Living 77

H. Educating Children With Disabilities 81

I. Personal Assistance 85

J. Coordination 89

Biographies of Members

of the National Council on the Handicapped 93

References 101
National Council on the Handicapped

800 Independence Avenue, S.W.

Suite 814

Washington, D.C. 20591

202-267-3846 v3ice

2C2-267-3232 TDD

An Independent

Federal Agency

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)

January 29, 1988

The National Council on the Handicapped is pleased to issue On the

Threshold of Independence, a report describing progress made toward increasing the independence and quality of life for persons with disabilities

since the Council's 1986 report, Toward Independence. On the Threshold of

Independence was developed in response to a statutory mandate that the

Council:

Not later than January 30, 1988, and annually thereafter, the National

Council on the Handicapped shall issue a report to the President and

Congress on the progress that has been made in implementing the recommendations contained in the Council's January 30, 1986, report Toward

Independence. The reports issued shall present, as appropriate, available

data on health, housing, employment, insurance, transportation, recreation, and education, and shall include appropriate information on the

current status and trends in the status of individuals with disabilities.

(Public Law 99-506, Section 502(b))

Toward Independence assessed the status of persons with disabilities in

America and the Federal laws and programs that affect them. It presented

forty-five legislative remedies to identified problems, all geared toward increasing the dignity and independence of Americans with disabilities. Since

the publication of Toward Independence, many doors, previously closed to

persons with disabilities, have been opened. On the Threshold of Independence describes accomplishments that have been achieved in response to the

recommendations in Toward Independence, and the degree to which the

recommendations have been implemented.

In some instances, the Toward Independence recommendations have

been the driving force behind particular legislative proposals, and the Council played a major role in the process of developing concrete statutory approaches. In other cases, the Council was but one of many voices in favor of

a particular proposal that led to legislative action. In either event, the Council gratefully acknowledges that the progress has been the result of the ideas,

comments, and diligent work of numerous persons with disabilities, their

families, public officials, other professionals and experts, consumer and

service organizations, and other interested individuals from all over the

country.

6
Some progress has been made in each of the ten topics of Toward Inde- pendence. There have been major statutory advances in many of the topic areas, bills are pending in others, and at least some positive administrative efforts or related activities have occurred in the remainder. In all, approxi- mately eighty percent of the recommendations have been either partially or

fully accomplished.

The Council is pleased at the many ways in which the Legislative and Executive Branches of Government have responded positively to its recom- mendations. Yet, the significant progress that has been made does not ob- scure the fact that many of the major recommendations have not yet been

addressed or addressed only partially many of the doors of opportunity

remain firmly shut to persons with disabilities. The Council seeks to rededicate its own efforts, and to join with the President, the Congress, and per- sons with disabilities and their families, to achieve the objectives of Toward

Independence. Only then will Americans with disabilities escape from situ- ations of dependence and dehumanization and cross the threshold of inde- pendence.

The Council appreciates the opportunity to continue to shape disability

policy and to work toward an America in which persons with disabilities are afforded all the opportunities that our society has to offer.

Sincerely,

j--(4411-4-6gri76 6"

Sandra Swift 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 and confirmed by the Senate. The Council was initially established in 1978 as an advisory board within the Department of Education (Public Law 95-

602). The Rehabilitation Act Amendments of 1984 (Public Law 98-221)

transformed the Council into an independent agency.

The current statutory mandate of the Council assigns it the following duties:

establishing general policies for and reviewing the operation of

the National Institute on Disability and Rehabilitation Research

(NIDRR);

providing advice to the Commissioner of the Rehabilitation

Services Administration (RSA) on policies and conduct;

providing ongoing advice to the President, the Congress, the

RSA Commissioner, the Assistant Secretary of the Office of

Special Education and Rehabilitative Services (OSERS), and the

Director of NIDRR on programs authorized in the Rehabilitation

Act;

reviewing and evaluating on a continuous basis the effectiveness of all policies, programs, and activities concerning handicapped individuals conducted or assisted by Federal departments or agencies, and all statutes pertaining to Federal pro- grams, and assessing the extent to which they provide incentives to community based services, promote full integration,

and contribute to the independence and dignity %.,f individuals with disabilities;

making recommendations of ways to impr9ve research, service,

administration, and the collection, dissemination, and implementation of research findings affecting handicapped persons;

reviewing and approving standards for Independent Living programs;

submitting an annual report with appropriate recommendations

to the Congress and the President regarding the status of re8

vil
search, affecting persons with disabilities and the activities of

RSA and NIDRR;

reviewing and approving standards for Projects with Industry

programs;

providing to the Congress, on a continuing basis advice, recommendations, .and any additional information which the Council

or the Congress considers appropriate; and

issuing an annual report to the President and the Congress on

the progress that has been made in implementing the recommendations contained in the Council's January 30, 1986,

report, Toward Independence.

While many government agencies deal with issues and programs affecting people with disabilities, the National Council is the only Federal

agency charged with addressing, analyzing, and making recommendations on issues of public policy which affect people with disabilities

regardless of age, disability type, perceived employment potential,

economic need, specific functional ability, status as a veteran, or other

individual circumstance. The Council recognizes its unique opportunity

to facilitate independent living, community integration, and employment opportunities for people with disabilities by assuring an informed

and coordinated approach to addressing the concerns of persons with

disabilities and eliminating barriers to their active participation in

community and family life.

9
The National Council on the Handicapped

Members

Sandra Swift Parrino, Chairperson

John S. Erthein

Theresa L. Gardner

Marian N. Koonce

Leslie Lenkowsky, Ph.D.

Nanette Fabray MacDougall

Robert Muller

Brenda Premd

*Harry- J. Sutcliffe, D.D.

Joni Eareckson Tada

Roxanne Vierra

A. Kent Waldrep, Jr.

Phyllis Zlotnick

Staff

Lex Frieden, Executive Director

Brenda Bratton, Secretary

Stacey Brown, Clerk Typist

Ethel Briggs, Adult Services Specialist

Robert Burgdorf Jr., Attorney/Research Specialint

Frances Curtis, Administrative Officer

Andrea Farbman, Public Affairs Specialist

Kathleen Roy, Children's Specialist

Deborah Shuck, Staff Assistant

LaVerne Chase, Fellow

D. Ray Fuller, Jr., Fellow

*Deceased 12/87

10 .
Acknowledgments

The Council is indebted to Andrea Farbman for coordinating, managing, and editing

this report. The contributions of staff members Ethel Briggs, Robert Burgdorf Jr.,

Kathy Roy, and fellows LaVerne Chase and D. Ray Fuller, Jr. arc greatly appreciated.

Gratitude is also extended to Richard Moss for graphic design and production, Karen

Primack for editorial guidance, and Unicor print plant for printing th. report.

.t1

xi
Executive Suramary

In. the 1986 Amendments to the Rehabilitation Act of 1973, Congress

required the Council to:

...issue a report to the President and Congress on the progress that

has been made in implementing the recommendations contained in

the Council's January 30, 1986, report Toward Independence.

The reports issued shall present, as appropriate, available data on

health, housing, employment, insurance, transportation, recreation,

and education, and shall include appropriate information on the

current status and trends in the status of individuals with disabilities. (Public Law 99-506, Section 502(b))

On the Threshold of Independence chronicles progress made on the

forty-five legislative recommendations which were proposed in the

Council's previous report, Toward Independence. Several recent studies

on disability, including one from the Census Bureau and two Harris

polls are also discussed.

Some significant progress has occurred in the two years since

Toward Independence was published. The Council has identified some

twenty-one statutory provisions consistent with its recommendations

in Toward Independence that have been enacted into law. In addition,

the Council is aware of eight bills that have been intzoduced in Congress, but not yet enacted, that would further proposals included in

Toward Independence.

Of the forte -=five legislative recommendations, eighty percent have

13 .1.1 either partially or fully accomplished. Many doors to independence have been opened, others remain closed or only partially opened.

This report assesses progress made in each of the ten topic areas

in 7bward Independence and ex.al-nincs the extent to which each of the

forty-five legislative recommendations have been implemented. The

following is an overview of progress that has occurred.

Equal Opportunity Laws

A major achievement in this area was the development by the Council

of a comprehensive legislative proposal, "The Americans with Disabilitit:.4i.ct of 1988," which teanslates the primary equal opportunity 1.r:commendations into proposed statutory language. Three other statt.41 the Rehabilitation Act Amendments of 1986, the Handicapped

Children's Pro:-..ction Act of 1986, and the Protection and Advocacy for

the Mentally Ill Individuals Act of 1986 incorporated other significant,

12
41111.

but narrower, equal opportunity recommendations. In spite of legiglalive progress made, the Council remains committed to passage-of its

comprehensive equal opportunity proposal as an essential prerequisite

to equality and independence for persons with disabilities.

Employment

In the area of employment of persons with disabilities accomplishments included pas rage of legislation incorporating several of the

Council's major recommendations in the areas of supported employment, transition, and tax incentives for employers. The Council believes that these legislative changes represent unprecedented gains in

terms of expanded employment opportunities for persons with disabilities. Additional congressional action is still needed to implement the

full range of the Council's recommendations, including the establishment of model centers on employment and return-to-work programs,

and elimination of the income eligibility requirement for persons with

disabilities under the Job Training Partnership Act.

Disincentives to Work under Social Security Laws

Legislation passed in the 99th Congress furthered several of the

Council's recommendations for the removal of barriers under the Social

Security Act that discouraged persons with disabilities from seeking

gainful employment. These included the Employment Opportunities for

Disabled Americans Act which made the temporary provisions of Section 1619 (a) and (b) of the Social Security Act permanent and established Section 303 of the Rehabilitation Act Amendments of 1986

which required the National Institute on Disability and Rehabilitation

Research to conduct a study of health insurance for persons with

disabilities. The Council continues to believe that the eligibility criteria

for Supplemental Security Income and Social Security Disability Insurance merit attention.

Prevention of Disabilities

The Council devoted considerable effort regarding policies and programs to prevent both primary and secondary disabilities. The Office of

Disease Prevention and Health Promotion, in conjunction with the

Council, convened a Federal ad hoc group on the prevention of disabilities which included a number of Federal agencies. The focus of this ad

hoc group was the exchange of information between Federal agencies

and the development of a national plan for the prevention of disabilities, as recommended by the Council. Funds have been sought for the

development of the national plan and a small community-based grants

xiv

13
program administered by the Centers for Disease Control. After these

projects have been comi.leted, the Office of Technology Assessment will

be asked to conduct a study on the status of prevention of disabilities

in America.

1111 Transportation

In Toward Independence the Council concluded that accessible transportation is a critical component of a national policy that promotes the

self-reliance and self-sufficiency of people with disabilities. The area of

greatest progress has been that of air transportation with the passage

of the Air Carrier Access Act of 1986. Other developments included the

introduction of bills to amend the Urban Mass Transit Act and to create a national uniform system for handicapped parking. The Council

affirms its commitment to improving access for persons with disabilities.

Housing

The housing legislative recommendations presented direct and indirect

means for increasing the housing opportunities available to persons

with disabilities. Some significant legislative proposals and administrative actions have furthered the Council's recommendations. At the

same time, many of the Council's key housing recommendations have

yet to receive congressional resolution and administrative implementation.

Community-Based Services for Independent Living

Centers providing independent living services have grown substantially

in number, scope, and resources. Consistent with the Council's recommendation, Congress has continued to appropriate funds for independent living. The evaluation standards for independent living services

developed by the Council have been endorsed by the Rehabilitation

Services Administration. Tax deductions for expenses incurred by

persons with disabilities have increased under the Tax Reform Act of

1986. Other Council recommendations regarding core funding and

institutional bias within the Health Care Financing Administration

have not been implemented.

Educating Children with Disabilities

The Education of the Handicapped Act Amendments of 1986 accomplished a primary recommendation of the Council by creating an early

intervention program to serve disabled infants from birth through age

two. In addition, the legislation included significant improvements in

14
services for three- to five-year-old children with disabilities. To further

implementation of its recommendation regarding standards to clarify

the concept of least restrictive environment, the Council developed a

draft policy statement on this issue. One activity not mentioned in

Toward Independence was the Council's initiation of a third Harris poll

to examine the status of education for children with disabilities. The

results of the poll will be of immense value to the Council, the Congress, and others in the deVelopment of educational policy to meet the

needs of children with disabilities.

Personal Assistance: Attendant Services,

Readers, and Interpreters

The Council established a task force for the development of a legislative package for a comprehensive national personal assistance program

and consulted with leaders in the field and numerous organizations around the country. A legislative workplan is currently being developed

which recommends amendments to legislation, and includes proposals

to fill service gaps in developing coordination of personal assistance

services.

Coordination

The Council participated in efforts that have fostered coordination of

services for people with disabilities on the Federal, State, and local

levelS. Examples of these efforts include participation in an ad hoc

group on the prevention of disabilities, observation of the regulatory

negotiation process for the Air Carrier Access Act of 1986, cosponsor- ship of a conference on transition with the Office of Special Education

and Rehabilitative Services, and recommendations in testimony for the

Education of the Handicapped Act Amendments of 1986. The Council

is also exploring the work of the Advisory Council on Intergovernmental Relations to identify data being gathered regarding coordination efforts

at the State and local levels.

xvi

1.5
Foreword

In response to Toward Independence, President Ronald Reagan proclaimed:

I agree with the goals implicit in Toward Independence equal opportunity

and full social participation for all Americans, and I am pleased to see that

your report sets forth a comprehensive agenda for progress toward these

goals....[However]The road toward full independence will not be easy.

(Reagan letter. Jan., 1986)

Toward Independence assessed the status of persons with disabilities

in America and the Federal laws and programs that affect them. The

report presented forty-five legislative remedies to identified problems,

all geared toward increasing the dignity and independence of Americans with disabilities. Each recormnendation can'be viewed as a means

of achieving a greater degree of independence; viewed together, the

implementation of all forty-five recommendations can bring about an

America in which disabled citizens are given the opportunity to be fully

participating members.

Since the publication of Toward Independence in 1986, many

doors, previously closed to persons with disabilities, have been opened.

Some doors to opportunities have been fully opened, some have been

opened halfway, some have been only cracked slightly, and still others

remain tightly shut. This report describes accomplishments that have

been achieved in response to the recommendations in Toward

Independence, and the degree to which the recommendations have

been implemented.

When the accomplishments of the past two years are examined in

their entirety, the overall effect can be viewed as having placed persons

with disabilities on the threshold of independence. For the areas in

which the proposals in Toward Independence have been implemented

and the doors to opportunity have been opened, the task remaining is

to keep the doors open and for people with disabilities to accept the

challenge of going through the doorways. For those areas-in which the

doors to independence are ajar, the Council hopes for further efforts to

keep opening up opportunities for independence, dignity, and selfsufficiency. For areas in which no progress has been made and the

doors to opportunity remain shut, the Council plans to redouble its

efforts, and looks to the Congress, the Administration, people with

disabilities and their families, services providers, and others, to join

with the Council to continue to push and knock until the doors are

opened.

While President Reagan has aptly warned that "[t]he road to full

16
independence will not be easy," some significant progress has occurred

in the two years since Toward Independence was published. The Coun- cil has identified some twenty-one statutory provisions consistent with

its legislative recommendations in Toward Independence that have

been enacted into law (see Table 1). In addition, it is aware of eight bills

that have been introduced in Congress, but not yet enacted, that would

further proposals included in Toward Independence. The Council does

not seek to claim for itself the credit for such laws and proposed legislation. The development of bills and,the process of getting them

through Congress and signed by the President is a highly collaborative

process involving the skills and commitment of many individuals and

organizations.

In some instances, the Toward Independence recommendations

have been the driving force behind particular legislative proposals, and

the Council has played a major role in the process of developing con- crete statutory approaches. In other cases, the Council was but one of

many voices in favor of a particular proposal that led to legislative

action. In either event, the Council gratefully acknowledges that the

recommendations issued in Toward Independence were the result of

the ideas, comments, and advice of numerous persons with disabilities, their families, public officials, other professionals and experts, consumer and service organizations, and other interested individuals from

all over the country.

The legislative recommendations contained in Toward Independence focused on ten major topic areas. Within each of these ten areas,

some progress has been made since the publication of that report.

There have been major statutory advances in many of the topic areas, bills are pending in others, and at least some positive administrative or

related activities have occurred in the remainder. Of the forty-five spe- cific legislative recommendations in Toward Independence, 75 percent, or thirty-four of the forty-five recommendations, have been partially

accomplished, and three have been fully accomplished (see Table 2).

The Council is pleased at the many ways in which the Legislative

and Executive Branches of Government have responded positively to

its recommendations. Yet, the significant progress that has been made

does not obscure the fact that many of the major recommendations

have not yet been addressed or addressed only partially many of the major doors of opportunity remain firmly shut to persons with disabilities. This report represents a recognition and affirmation of the progress since Toward Independence, but it also provides an assessment of

how much has not been accomplished. The Council seeks to rededicate

its own efforts, and to join with the President, the Congress, and per- sons with disabilities and their families, to achieve the objectives of

xviii

17
Table 1

Summary of Accomplishments

on the Recommendations from Toward Independence

Topic Area Legislative Activity

Statutory Bills*

Provisions

Equal Opportunity Laws 6 3

Employment 4 0

Disincentives to Work 3 0

Prevention 3 1

Transportation 2 3

Housing' 0 2

Independent Living 2 0

Education 1 0

Personal Assistance 0 0

Coordination 0 0

Totals 21 9

*Includes the Council's proposed "Americans with Disabilities Act of 1988."

I, 8
Table 2

Summary of Accomplishments

on the Recommendations from Toward Independence

Topic Area Level of Achievement

Full Partial No Activity

Equal Opportunity Laws (6)* 0 6 0

Employment (8) 0 4 4

Disincentives to Work (3) 1 1 1

Prevention (3) 0 2 1

Transportation (6) 1 3 2

Housing (8) 0 7 1

Independent Living (4) 0 2 2

Education (4) 1 3 0

Personal Assistance (2) 0 2 0

Coordination (1) 0 I. 0

All recommendations (45) 3 31 11

*denotes number of Toward Independence recommendations

xx 19
Toward Independence. Only then will persons with disabilities in the

United States escape from situations of dependency and dehumanization and cross the threshold of independence.

'ad
Introduction

Background

On January 29, 1986, the National Council on the Handicapped released its comprehensive blueprint for disability policy in America.

Toward Independence was developed in response to a 1984 congressional mandate for the Council to:

assess the extent to which Federal programs serving people with disabilities

provide incentives or disincentives to the establishment of communitybased 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 that report, the Council presented its findings, conclusions, and

legislative recommendations based upon its review and assessment of

Federal laws and programs, as well as input from hundreds of persons

with disabilities.

Relevant information and data were collected by:

examining current legislation and programs;

collecting and analyzing information about exemplary programs;

reviewing existing analyses of Federal programs and disability issues;

consulting with experts;

conducting special sem'nars and hearings; and

conducting forums with persons with disabilities and their families

throughout the United States.

As a result, Toward Independence listed major Federal programs

serving individuals with disabilities and ranked them according to

expenditures, with an estimated number of persons with disabilities

served. From its analysis, the Council drew three primary 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 on initiatives for equal opportunity, independence, prevention, and self-sufficiency.

1

21
7-

77.

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

The Council also =aired Federal spending on disability. "Our

nation's current annual Federal expenditure on disability benefits and

programs exceeds $60 billion" (p.2). Further examination of that estimate revealed that the combined spending for Fiscal Year 1986 for

the education of handicapped children and vocational rehabilitation totaled less than $S billion, or less than five percent of the

total dollars spent on disability. This startling underemphasis of

spending on'programs and services oriented toward the goals of independence and self-reliance caused the Council to target its legislative

recommendations on more fiscally responsible approaches which emphasize productivity and self-determination.

The forty-five legislative recommendations in Toward independence

focused on ten major topic areas of particular importance to persons

with disabilities. These ten topics were discussed extensively in a 600- page Appendix to the report. In order to review the major recommendations from the topic areas, a brief synopsis follows.

Recommendations from Toward Independence

Based on testimony and comments from hundreds of people.with disabilities, parents, and others, the most pervasive and recurrent problem faced by disabled persons appeared to be unfair and unnecessary

discrimination.

...[W]hatever the limitations associated with particular disabilities,

people with disabilities have teen saying for years that their major

obstacles are not inherent in 'heir disabilities, but arise from bathers that have been imposed externally and unnecessarily. (p.1)

Equal Opportunity Law

The Council recommended 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

unemployed and underemployed segment of the population the Council recommended several legislative changes, concerning the transition

from school to work, supported employment, private sector initiatives,

job training, job development, and placement.

2

22
Disincentives to Work Under Social Security Laws

The Council outlined 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 self supporting. In response to these work disincentives,

the Council recommended corrective amendments to the problematic

provisions.

Prevention of Disabilities

To promote the prevention of disabilities and to assure that individuals

having disabilities do not experience unnecessary secondary disabilities, the Council recommended that the Federal Government mount a

national program for the prevention of disabilities.

Transportation

The Council recommended amendments to transportation legislation to

achieve the Nation's established policy that "disabled people have the

same right to use public transportation as nondisabled persons." Proposals related to urban mass transit, air transportation, intercity and

interstate buses, private vehicles, and research.

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 made 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 proposed 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 communitybased services for independent living.

Educating Children with Disabilities

The Council made legislative recommendations regarding educational

opportunities for children with disabilities. These recommendations

responded 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 inde- pendence and avoiding expensive institutionalization, the Council recommended a national commitment to developing a quality system of attendant services, readers, and interpreters.

Coordination

The Council recommended that all Federal and federally supported

disability-related programs be authorized and required to develop a

joint plan for the systematic coordination ofservices and benefits.

Dissemination and Response

to Toward Independence

Reactions to Toward Independence were overwhelmingly positive. Some of the highest accolades were expressed in a letter from President Reagan (a replica of the letter appears on page 5). In addition to sending copies to the White House and to all members of the Senate and

House of Representatives, the Council released Toward Independence

at two Washington press conferences.

Media Coverage

One of the factors that increased the visibility of Toward Independence was the simultaneous release of an unprecedented nationwide Harris

poll that examined the perceptions ofpersons with disabilities (for details on the poll, see: "Recent Data and Trends"). Toward Independ- ence and the Harris poll were coverer on the front page of USA Today, as well as in articles in many local pivers across the country. Televi- sion coverage included interviews with Chairperson Sandra Swift Parrino on "Today in New York City" and "Live at Five" on station WPLG in

Miami, Florida. And radio broadcasts were generated from as far away

as Seattle, Washington, St. Louis, Missouri, and Miami, Florida. Based

on a request from the Voice of America, the Council and Toward Independence were featured on a radio program broadcast in the Peoples Republic of China.

The disability community also openly embraced Toward Independ- ence. Publications such as the Disability Rag and various newsletters

ran articles emphasizing the comprehensiveness and depth of the

report's recommendations.

4

24
THE WHITE HOUSE

WASHINGTON

January 29, 1986

Dear Mrs. Parrino:

Thank you for Toward Independence, the special report of the National Z't., neil on the Handicapped.

I congratulate the members and staff of the Council on

the completion of this report, and I commend the many

individuals from all of the fifty states who donated their

time, their talents, and their economic resources to

produce this special testament to the spirit of independence. Their contributions demonstrate the vitality of our democratic process and the commitment of the American people to the principles of independence and opportunity for all.

I agree with the goals implicit in Toward Independence equal opportunity and full social participation for all Americans, and I am pleased to see that your report sets forth a comprehensive agenda for progress toward

these goals. My Administration will study your report and cooperate with the Council, with the Congress, and with disabled Americans and their supporters to refine

and develop these proposals.

The road toward full independence will not be easy. It will require the efforts of individuals, families, and

communities as well as part tership between the private

sector and all levels of government. You can be

assured of my complete cooperation as we work together

to make the American dream a reality for all our people.

Sincerely,

Qcsumatt

The Honorable Sandra S. Parrino

Chairperson National Council on the Handicapped

123 Marlborough Road Briarcliff Manor, New York 10510

25
Visibility on Capitol Hill

Opportunity for close scrutiny came when the National Council on the

Handicapped appeared before the House and Senate Committees on

Appropriations to review the Council's Fiscal Year 1987 Budget request. Both Committees queried Council Chairperson Sandra Swift

Parrino and Executive-Director Lex Frieden about the report's recommendations and plans for implementation.

Senator Lowell Weicker opened the Council's 1986 appropriation

hearing by congratulating the Council for its accomplishments and

remarking about the uniqueness of the Council: "I think really, so

many of these national councils'are a lot of show and don't do anything. I think you are terribly blessed....You have a great outfit here."

Later in the hearing Senator Weicker added:

...I want to thank you for everything that you are doing; for the report

Toward Indepen.deitce. I think it is a magnificent piece of work, the Harris

poll, with the professionalism that you are bripging with the Council to

where the Council's voice is listened to by everybody, am. for the courage in

cutting across all partisan and philosophical bounds in order to achieve the

result of those you serve, which is what it is all about. (p. 805)

Senator Weicker asked Chairperson Parrino to summarize Toward

Independence and describe how the Council planned to follow up and monitor each of the forty-five recommendations. Mrs. Parrino detailed

the Council's workplan and implementation strategies.

On the House side, Congressmen William Natcher, Silvio Conte,

and Carl Pursell further explored the recommendations of Toward

Independence. In responding to a question from Congressman Pursell,

Executive Director Frieden commented on the major themes of the

report:

There are two principal themes that run through this report. One of those

deals with equal opportunity....The second predominant theme relateS to

independence for people with disabilities. We believe community-based

programs that facilitate independence for people with disabilities are the

most cost-effective means of providing disabled people the opportunity to

make choices about their own lives. (p. 443)

In addition to being a topic for discussion during the Council's appropriations hearings, a number of legislators integrated recommendations from Toward. Independence into their own speeches and comments on disability-related legislation. For example, in his remarks on

the Employment Opportunities for Disabled Americans Act, Congressman Steve Bartlett used Toward Independence to underscore the importance of employment opportunities for persons with disabilities.

6

26
Toward Independence

Featured at Conferences

In the course of the two years since the publication of Toward

Independence, the report has -been used repeatedly as the centerpiece

for conferences, meetings, and forums. Organizations such as the

Paralyzed Veterans of America, the National Easter Seal Society, and

the National Council for Independent Living have all employed the

report as a tool from which to generate discussion about disability

policy.

Follow-up Report Mandated by Congress

Subsequent to the report, Congress reauthorized the Rehabilitation Act

of 1973 in the Rehabilitation Act Amendments of 1986. In the Amendments, Congress required the Council to report on progress that had

been made on the recommendations in Toward Independence.

Section 502 of the Rehabilitation Act Amendments of 1986 states:

(b)(1) Not later than January 30, 1988, and annually thereafter, the National Council on the Handicapped shall issue a report to the President and

Congress on the progress that has been made in implementing the recommendations contained in the Council's January 30, 1986, report Toward

Independence.

(2) The reports issued pursuant to paragraph (1) shall present, as appropriate, available data on health, housing, employment, insurance, transportation, recreation, and education, and shall include appropriate information

on the current status and trends in the status of individuals with disabilities.

Thus, the intent of this followup report is to chronicle progress made

on each of the forty-five legislative recommendations proposed in Toward Independence. For the purpose of this report, progress includes

the convening of important meetings and conferences, the initiation of

correspondence, and the development of legislation and regulations.

Progress was realized not solely by the Council, but also by disability

organizations, service providers, government agencies, individuals, and

others. The period covered by this report is February 1, 1986, through

November 18, 1987.

27 7

Sj
ti Recent Data and Trends

Accurate statistical data in the area of disability are imperative for

policy-makers and others. As reported in Toward Independence, existing studies have been fraught with problems. Since the publication of

Toward Independence, however, a number of significant studies have

been conducted.

The Census Bureau issued an important study of functional limitations in December 1986. Entitled "Disability, Functional Limitation,

and Health Insurance Coverage: 1984/85," the report presents data

drawn from the Bureau's Survey of Income and Program Participation,

conducted in May through August of 1984.

In the report, researchers found that one out of five non-institutionalized residents aged 15 and over some 37 3 million persons has

difficulty performing one or more basic physiCal activities. The activities included seeing, hearing, speaking, walking, using stairs, lifting or

carrying, getting around outside, getting around inside, and getting

into or out of bed. Some 13 5 million persons said that they not only

had difficulty, but could not perform the activity specified or could not

do it without help.

Among the findings of the study:

Some 12.8 million people, or 7.1 percent of the population

studied, had trouble seeing words and letters in ordinary newsprint, even with glasses or contact lenses. Approximately 1.7

million could not see words and letters at all.

About 7.7 million people had trouble hearing a normal conversation, and 500,000 were unable to hear such a conversation.

Some 2.5 million people had a problem having their speech

understood by others.

About 19.2 million people had difficulty walking a quarter of a

mile, including 8 million who reported that they were unable to walk that far.

Some 18.1 million people had trouble walking up a flight of

stairs without resting, and 5.2 million could not do so on their

own.

nout 18.2 million persons had trouble lifting or carrying

something as heavy as a full bag of groceries, and 17.8 million

of them could not do so.

Some 6 million individuals had trouble getting around outside

the home, and 3.6 million of them could not do so on their

own.

28 9
O Approximately 2.5 million people had trouble getting around

inside the home, and 1.2 million were unable to do so without

help.

O Some 2.1 million people had difficulty getting into or out of

bed, and 1.2 million of them could not do so on their own.

CI Of those who had trouble performing at least one function, 21.8

million were under age 65 and 15.5 million were 65 and over,.

The totals for those completely unable to perform an activity or

who needed help were 6 million under age 65 and 7.5 million

65 and over.

One of the data sources employed in the development of Toward

Independence was the Digest of Data on Persons with Disabilities, prepared by Mathematica Policy Research, Inc. under contract to the

Congressional Research Service of the Library of Congress. The information in the Digest has been supplemented by two reports prepared

by the Human Services Research Institute and issued by the National

Institute on Disability and Rehabilitation Research. The Summary of

Data on Handicapped Children and Youth (1985) compiles data from

various sources regarding the incidence and prevalence of disability in

children.

Among the statistical highlights contained in the report are estimates that 4.2 percent of all children under age twenty-one have a

chronic activity limitation, and that about one-fourth of 1 percent of

children under age seventeen need help in activities such as walking,

going outside, dressing, eating and using the toilet. The Compilation of

Statistical Sources on Adult Disability (1986) provides a bibliography

containing profiles of major national data files. It is designed to serve

as a reference for researchers, administrators, and practitioners looking for statistical information on adult impairments. The Compilation

describes thirty data files, some of which contain two or more related

surveys.

Several publications have made projections regarding the population with disabilities. These include two publications of the Menninger

FoundationTA-Population-Model-of-WorIcing-AgeDisabled-Individuals-

(1985) and The Relationship Between Age and Physical Disability

Among Workers: Implications for the Future (1986), and a book chapter

by H.R Vachon, III, entitled "Inventing a Future for Individuals with

Work Disabilities (1986). All three sources provide estimates of the size

and characteristics of the population with disabilities through the year

2000 and beyond. Among a variety of other observations and findings,

these publications verify two major premises of Toward Independence

that disabilities correlate with aging, and that the proportion of the

10 29
population with disabilities will increase significantly during the next

several decades.

Harris Polls

Clearly, the two Harris poll studies initiated by the Council also made

important and unique contributions to the disability community. The

idea for the first Harris poll evolved during the initial phases ofToward

Independence. Several Council members expressed frustration at the

lack of adequate data regarding the status, needs, and opinions of

Americans with disabilities. One Council member suggested a nationwide survey of persons with disabilities:

A short time later_, working in conjunction with the Council, the

International Center for the Disabled commissioned such a study from

the well-known survey research firm of Louis Harris and Associates.

The survey, entitled "Bringing Disabled Americans into the Mainstream," was the first major national survey to study the attitudes and

experiences of people with disabilities. As the Harris agency correctly

acknowledges:

Census Bureau and other government agencies have measured the incidence and prevalence of disability in the general population, and the number of disabled people in and out of the labor force...But no substantial

nationwide survey has sought to learn the impact of disability; what disabled people think about being disabled; and what they think must be done

to enable them to participate fUlly in the life of the nation (p.i).

The Council decided that it needed to know the answers to such questions before it could address the needs of disabled persons and effectively set disability policy in America.

Sample

One unique aspect of the Harris poll was its use of a nationwide random sample. Harris researchers ielephoned 12,500 households to

obtain 1,000 respondents who met at least one of the definitional criteria (which will be discussed in the next section). The sample represented-non-institutionalize&disabledpersons-aged-sixteen-and-over

who lived in households with telephones. When 'a disabled person was

unavailable for an interview, or unable to be interviewed, a proxy was

chosen as the respondent. About seventeen percent of the interviews

were conducted with proxies.

Issue of "eciftic:::

Toward Independence points out that the issue of defining disability is

11

3Q
not simple. "Most existing studies of the disabled population employ

one of two major approaches, each of which has its own shortcomings

and limitations" (p.3). The health conditions approach stresses conditions or limitations which impair health or interfere with normal functioning. This approach is best exemplified in surveys conducted by the

National Center for Health Statistics. On the other hand, the work

disability approach focuses on factors that prevent individuals from

working or limit their ability to work. Data collected by the Social Security Administration exemplify this type of definitional approach.

Knowing the limitations of these approaches, Harris sought to

solve the problem by using a third approach. For purposes of the Harris survey, a person was defined as being disabled if:

He or she had a disability or health problem that prevented them

from participating fully in work, school, or other activities.

He or she said that he or she had a physical disability, a seeing, a

hearing, or speech impairment, an emotional or mental disability, or a learning disability.

He or she considered himself or herself disabled, or said that

other people would consider him or her disabled. (p.

In a Council report on the Federal Government implications of the

Harris survey (to be published in 1988), strong support was given to

the application of this approach:

The Harris...approach should be considered as a starting point or

conceptual model in the development by Federal agencies of more

adequate instruments and studies... In particular, the Bureau of

Census should consider the definitional approach in the Harris

survey for reformulating questions on disability for the decennial

Census...."

Numbers and Types

of People with Disabilities

Another issue discussed in Toward Independence was the number of

people with disabilities in the U.S. Various.estimates-place-the-number

between twenty million and fifty million, with thirty -five or thirty-six

million being the most commonly used figures. Based on the. Harris

data, it was estimated that the incidence of disability was 15 percent and that the number of Americans aged sixteen and overwas between

twenty-seven and twenty-eight million (p.123). Although the Harris

survey did not use people under age sixteen in the survey, it found the

overall incidence for this group to be 1.5 percent or about three million. This figure is drastically lower than other estimates of the number

12

31
of children with disabilities, and appears to reflect an undercount.

According to the Harris figures, the disabled population is between

thirty. and thirty-one million. When the number of disabled persons in

institutions is considered, along with those in households without

telephones or in households in which Telecommunication Devices for

the Deaf are used exclusively, and when the undercount of children

with disabilities is considered, the figure of thirty-five or thirty-six

million is roughly validated.

Another complex question to answer, and one that is somewhat

dependent on which definitional approach is selected, relates to the

types of disabilities. Toward Independenceprovided data with a variety

of classifications and categories from such sources as the National

Center for Health Statistics, the National Institute of Mental Health.

and the Office of Special Education and Rehabilitative Services.

Harris data revealed that 44 percent of respondents stated that

they had a physical disability, 13 percent had sensory impairments

(visual, hearing, speech, and/or language), 6 percent had a mental

disability (mental retardation or mental illness), and 32 percent had

other seijous health impairments (heart disease, respiratory disease,

etc.) 'Thirty-two percent of the Harris sample considered themselves

multiply disabled, while the remainder did not. Finally, with regard to

the severity of disability, 45 percent considered themselves to be

slightly or moderately disabled and 52 percent considered themselves

to be somewhat or very severely disabled.

Age

Based on Census data, Toward Independence confirmed what many

have observed: the incidence of disability increases dramatically with

age. Harris data showed that "58 percent of people with disabilities

were 55 years of age or older, and 71 percent were 45 or older. In contrast, only 16 percent of disabled people were between the ages of 16

and 34. Twelve percent were in the 35-44 age range" (p.15).

Income _- Numerous studies_have,confIrMed the correlation between disability

and poverty. Toward Independence drew from 1980 Census figures on

income levels of those with work disabilities. Some 20.1 percent of the

persons reporting a work disability had family incomes below the poverty threshold. That figure was more than double the 1980 Census rate

of 9.1 percentior the general population.

The Harris survey confirmed the great disparity between the incomes of those with disabilities and those in the general population.

According to Harris, half of all disabled persons surveyed had incomes

13

3 2
of $15,000 or less. Among non-disabled Americans, just over a quarter had incomes in that bracket.

Harris highlights the alarming rate of poverty among older disabled

persons. "Fully one in three (32%) of disabled persons aged 65 and

over report a household income of $7,500 or less. Six out often elderly

disabled persons report a household income, of $15,000 or less" (p.23).

Poverty also correlates with severity of disability. Using the Harris

definition of disability, both those who are the most severely disabled

and those who stated that their activities are the most limited have the

lowest family incomes.

Education

The Harris poll examined the education levels of persons with disabilities. "Forty percent of all disabled persons aged 16 and over did not

finish high school. This proportion is nearly three times higher than in

the non - disabled- population, where only 15% of adults aged 18 and

over have less than a high school education" (p. 23).

Future studies are needed to determine of the impact of the Education of All Handicapped Children Act, Publit Law 94-142. As the Harris

report comments: "These data provide no measure of the impact of the

Education Act of 1975 [sic), since only a small minority of the sample

were educated since its passage" (p. 88). Thus, at the urging of the

Council, a third Harris poll surveying parents of children with disabilities, disabled children themselves, and educators, is being conducted

and will be released in 1988 (see also "Educating Children with Disabilities").

Statistics from the first poll on college education, although not

surprising, are also disconcerting. Only 29 percent of disabled persons have had some college, or at least a four-year degree, compared with 48

percent of the non-disabled population.

Employment

Census figures on individuals with work disabilities used in Toward

Indeperiderice revealed' that only 32-percent of working age persons with diSabilities 444 As at the time of the 1980 Census (p.22). Data

from the first ,Harris pelf confirmed those figures. The chapter describing the employment status of disabled- 'persons was entitled "Working

or Not WOrking:"The Great 'Divide." The Harris report remarks:

14

Not working. is perhaps the- truest definition of what it means to be disabled

in this country. Two-thirds of all disabledAmericans between age .16 and

64.are not working. Only one,in four work full=time, and another ,10% work

33
part-time. No other demographic*group under 65 of any size has such a

small proportion working. (p.47)

Even though the number of persons with disabilities not working is so

large, one optimistic finding is that of the persons with disabilities who

are not working, two-thirds say that they would like to work. As the

Harris report declares, "This finding that most non-working persons

want to work is one of the most important and challenging findings in

the survey. The challenge is how society can effect policies and programs which will bring these people into the working mainstream"

(p.50).

Barriers preventing the employment of persons with disabilities are

significant. When asked by Harris to comment on barriers respondents

identified being limited by their own disabilities or their need for medical treatment and therapy. They also mentioned employers' attitudes,

lack of appropriate jobs, insufficient education and training, lack of

accessible transportation, and lack of necessary equipment or devices.

Based on data from the first Harris poll, and the conclusion that

the employment picture needed more in-depth study, a second Harris

poll was conducted which focused on employers' perceptions of disabled employees. Although this second study is discussed more fully in

the Employment topic paper, a few relevant points are summarized

here to supplement the overall status of employment of persons with

disabilities.

Disabled employees received very high marks from employers.

"Overwhelming majorities of managers give disabled employees a good

or excellent rating on their overall job performance" (p.7). The myth

that the cost involved in hiring disabled people is high was dispelled by

a 75 percent majority of managers who said that the average cost of

hiring a disabled person is about the same as the cost of employing a

non-disabled person (p.9).

Managers appear to be aware of the discrimination faced by disabled employees. "A three-fourths majority of managers feel that disabled- people- often encounter-discrimination -from employers" - (p. -12).

Although the study portrays disabled persons as being a strong,

untapped resource, it also points out that the employment of disabled

persons is not likely to increase because:

DI Most managers think their company is already doing enough to

employ disabled people and should not make greater efforts to

do so.

DI Most employers believe that the shortage of disabled job applit 34

15
cants with appropriate qualifications is a major barrier to their

employing of more disabled people.

0 Employers give the hiring of disabled people a lower priority

than the hiring of people from minority groups and the elderly.

And disabled people are the least likely to be viewed as an excellent source of employees. (p.16)

Harris concludes that efforts to increase the employment of disabled

people will require an increase in the number of qualified job applicants and employers giving the hiring of disabled persons a higher

priority (p.16).

Social Life and Leisure

The Harris survey provided important new data regarding the limited

independence of people with disabilities in regard to social life and

leisure experiences. Harris researchers included questions on social life

and leisure patterns for which they had comparable data on the nondisabled population. They discovered a group of people who are extremely isolated and simply do not get out and pursue as many activities as non-disabled persons.

Over half of those surveyed said that their disability prevents them

from getting around, attending cultural or sports events, or socializing

with friends outside their home as much as they would like. The more

severely disabled the individual, the more these statistics increase.

Almost 80 percent of very severely disabled persons do not get around

in the ways mentioned.

Harris researchers found significantly lower participation rates

among disabled persons for specific activities:

16

Cl Nearly two-thirds of all disabled Americans never went to a

movie in the past year. In the full adult population, only 22%

said that they had not gone to a movie in the past year.

O Three-fourths of all disabled persons did not.see live theater or

a live music performance in the past year. Among all adults,

about 4-ourritIO'liad not done-so.

O Two-thirds of all disabled persons never went to a sports event

in the past year, compared to 50% of all adults.

O Disabled people are three times more likely than are non-disabled people to never eat in restaurants. Only 34 percent of

disabled people eat at a restaurant once a week or more, compared to 58% majority of non-disabled people. (p.3)

Traditional leisure ,pursuits are not the only activities limited for

35
disabled persons. Those social activities associated with daily living

and community life are also affected. For example, 13 percent of disabled persons never go to a grocery store, compared to 2 percent of the

general public (p.3). Only 36 percent of disabled.persons participate

actively in community, religious, volunteer or recreational groups, as

compared to 60 percent of non-disabled persons.

Because of the isolated and non-participatory status of persons

with disabilities in leisure activities, it is clear that this area is one that

merits further investigation and policy development. The complex

interactions between leisure and schooling, leisure and work, and

leisure and health also need to be examined.

Emerging Political Constituency

Disabled voters have gained increasing attention from candidates. Most

recently, efforts are being made to make polling places accessible ti

persons with disabilities. Of course, these efforts have even more importance in 1988, a Presidential election year.

The Harris researchers explored the degree to which persons with

disabilities felt a common unity. An overwhelming majority, 75 percent,

of Americans with disabilities reported that they felt some sense of

common identity with other people with disabilities (p.110). Furthermore, the Harris report notes, "the strength of identification varies little

among disabled people of all ages, those who have been disabled all or

only part of their lives, and among those who are moderately orseverely disabled" (p.110).

In analyzing this phenomenon, the Harris report remarks:

These results show clear signs of an emerging group consciousness. Many

other findings in the survey indicate that most disabled person view their

disability as their own problem. But these attitudinal data suggest that the

common experience of not working and facing limitations in physical and

social activities, affects how disabled persons relate to, and perceive, other

disabled people. (p.110)

In a Council report on the Federal policy implications of the Harris poll,

further-analysis-is offered:-"..;[11ersonswith-disabilities are an emerging political constituency whose views and objectives will become an

increasingly important aspect of American politics and program administration" (p.24).

Endorsement of Nondiscrimination Law

A central theme of Toward Independen ;:e3 was the enactment of a comprehensive law requiring equal opportunity for persons with disabilities. As an emerging political constituency, the views of people with

36 17
disabilities regarding such a law are important. The Harris survey

found strong support for legal protection against discrimination on the

basis of disability:

When it comes to how disabled persons should be treated under the law, a

near consensus emerges. Three out of every four (75%) disabled persons

believe that civil rights laws that protect minorities against discrimination

should also protect them. (p.112)

It is also clear from the survey that disabled Americans strongly

endorse efforts by the Federal Government to enhance the lives of

persons with disabilities. "A two-thirds majority of disabled Americans

think that federal laws passed since the late 1960's to give better opportunities to disabled Americans have helped a great deal or somewhat" (p.1).

Disabled Americans are not alone in their belief that they should

be protected from discrimination by law. All four manager groups in

the second Harris poll on employment were asked if the civil rights

laws that cover minorities against discrimination should also cover

disabled persons. "Majorities of top managers, EEO managers, line

managers, and small business managers think they should" (p.25),

Both Harris polls have demonstrated support for equal opportunity

legislation that would protect people with disabilities from discrimination.
Equal Opportunity Laws

A major obstacle to achieving the societal goals of equal opportunity

and full participation of individuals with disabilities is the problem

of discrimination. Discrimination consists of the unnecessary and

unfair deprivation of an opportunity because of some characteristic

of a person. It is the antithesis of equal opportunity. The severity

and pervasiveness of discrimination against people with disabilities

is well-documented. (Appendix to Toward Independence, p. A-3)

Existing-nondiscrimination laws, such as Section 504 of the Rehabilitation Act of 1973, are extremely important and have engendered much

progress. In an overall context, however, our Nation's laws provide

inadequate protection from discrimination for people with disabilities.

Current statutes are not comparable in their scope of protection

against discrimination to those afforded racial, ethnic, and religious

minorities and women under civil rights laws.

The National Council on the Handicapped believes that equality of

opportunity is a bedrock right in our society, and that discrimination

against people because of their disabilities is an unacceptable denial of

that right. Such discrimination is not only an affront to the dignity of

the individual involved, but it undermines Federal programs that attempt to promote the independence and self-sufficiency of persons with

disabilities. Discrimination is a significant reason why many people

with disabilities are trapped in situations of dependency dependency

which costs our Nation dearly, both in lost potential productivity and

Ln dollars spent for support programs.

President Reagan has declared:

Our Nation's commitment to equal protection of the laws will have little

meaning if we deny such protection to those who have not been blessed

with the same physical or mental gifts we too often take for granted. I

support Federal laws prohibiting discrimination against the handicapped.

and remain determined that such laws be vigorously enforced.

.(President Reagan,1982)_

To address the problem of discrimination against persons with

disabilities, the Council has advocated comprehensive equal opportunity protection for persons with disabilities. In the Toward Independence topic paper on "Equal Opportunity Laws," the Council examined

the current status of disability-related nondiscrimination laws and

Identified large gaps in coverage, shortcomings and inconsistencies in

interpretation and application, and deficiencies in enforcement. TO

correct these problems, the Council recommended a series of legislative

19

38
improvements. Chief among these is the enactment of a comprehensive equal opportunity statute providing clear standards of nondiscrimination, with broad coverage paralleling laws prohibiting discrimination on

the basis of race, sex, religion, and national origin.

There have been scme significant, albeit limited, legislative ad- vances achieving some of the Council's equal opportunity proposals. But the major efforts, especially regarding the enactment of a compre- hensive equal opportunity statute, have only recently begun to gain momentum.

N Recommendations from Toward Independence

In Toward Independence, the Council made ten legislative recommen- dations regarding equal opportunity laws for persons with disabilities. Five of these recommendations were directly concerned with the enact- ment of a comprehensive law prohibiting discrimination against per- sons with disabilities. The Council has tentatively entitled this draft

legislative proposal "The Americans with Disabilities Act of 1988." The

other five recommendations called for additional legislative enactments and amendments to increase legal guarantees of equal opportunity for persons with disabilities.

Comprehensive Equal Opportunity Statute

1. Congress should enact a comprehensive law requiring equal op- portunity for individuals with disabilities, with broad coverage and setting clear, consistent, and enforceable standards pro- hibiting discrimination on the basis of handicap.

Accomplishments

The foregoing is the first legislative recommendation in Toward Independence. Its primacy in the proposals presented to Congress and the President reflects the Council's view that protection from discrimination is a baseline necessity, and one that is not being adequately ad- dressed in the existing statutes and legal precedents. In forums with

citizens with disabilities across the Nation, the

one

has heard over

-and'overthat the iiiiiiiber-o ne problem faced-by indi- viduals with disabilities.

"Bringing Disabled Americans into the Mainstream," a nationwide poll conducted in 1986 by Louis Harris and Associates, underscores

the conclusion that discrimination is a problem that people with dis- abilities frequently experience. Respondents identified a variety of types of discrimination they had experienced, including workplace discrimi- nation, denials of life and health insurance, denials of educational

opportunities, lack of access to public buildings and public bathrooms,

20

39
the absence of accessible transportation, and various forms of social

rejection (others shying away or feeling sorry for them). One-fourth of

those interviewed said that they personally had encountered job discrimination because of their disabilities. Forty-seven percent of those

individuals who were not employed or employed less than full-time

listed as an important reason why they were not working that employers would not recognize that they were capable of doing a full-time job.

In a subsequent Harris poll of employers (1987), three-fourths of managers of businesses reported that people with disabilities "often encounter job discrimination from employers."

The first Harris poll found great support among individuals with

disabilities for legal protection against discrimination on the basis of

disability. Its survey report declared:

When it comes to how disabled persons should be treated under the

law, a near consensus emerges. Three out of every four (75%) disabled persons believe that civil rights laws that protect minorities

against discrimination should also protect them. Only 17% disagree.

(p 112)

Such strong support for legal protection from discrimination corroborates the Council's priority for the enactment of a comprehensive equal

opportunity law.

While the first recommendation in Toward Independence is a call

for Congress to enact a comprehensive statute guaranteeing equal

opportunities for persons with disabilities, the second through the fifth

recommendations give more detail as to the content of such a law. The

second recommendation describes tie broad scope of statutory coverage that the proposed law should encompass. The third recommendation proposes that the law should include a definition of discrimination

and standards for applying it. Recommendation number four discusses

enforcement mechanisms and regulations that should be issued under

the proposed law. The fifth recommendation deals with guidelines for

accessibility, an the role of the Architectural and Transportation

Barriers Compliance Board under the comprehensive statute. All of

these recommendations would be satisfied by the enactment of a single

piece of legislation the comprehensive equal opportunity law with the

features proposed-by the Cburiail.

There have been some narrow, but significant, legislative advances

in the direction of the Council's equal opportunity initiative. In Toward

Independence, the Council noted that the Supreme Court's decision in

Atascadero State Hospital v. Scanlon (473 U.S. 234 (1985)) recognized

States' immunity from suits in the Federal courts to enforce nondiscrinunation requirements. This situation was corrected with the enactment of the Rehabilitation Act Amendments of 1986 (Public Law 99-

506). Section 1003 of that Act provides that States may not invoke

21

40
immunity under the Eleventh Amendment if they are charged with

discrimination on the basis of handicap in violation of Section 504 of

the Rehabilitation Act.

The Council also recommended the correction of certain problems with the provisions regarding terms of office ofmembers of the Architectural and Transportation Barriers Compliance Board under section

502 of the Rehabilitation Act of 1973 (Toward Independence, p.:7,1, and Appendix, p. A-31). The wording of the statute regarding the appoint- ment of succeeding members to the Board and the commencement of

the successors' appointments han led to unfilled vacancies on the

Board. The Council proposed that the terms of office provisions of Section 502 follow the approach taken in most other governmental boards and stipulate that members are to serve until their successors

have been appointed and are ready to serve. This correction was made

with the enactment- of Section 601(a) (3) of the Rehabilitation Act

Amendments of 1986 (Public Law 99-506), which amended Section 502

to change the language in accordance with the Council's recommendation. The application of nondiscrimination requirements to airlines has

been clarified by the Air Carrier Access Act of 1986 (Public Law 99- 435), which prohibits discrimination on the basis of handicap by all air carriers. (The Air Carrier Access Act is discussed more extensively in

this report in the section dealing with Transportation.)

The Council has also noted the restrictions upon coverage of existing nondiscrimination statutes protecting people with disabilities resulting from the "program or activity" limitation (See, Toward Independence, Appendix, pp. A-8 and A-9). Pursuant to decisions of the

United States Supreme Court in Grove City College v. Bell (465 U.S. 555 (1984)) and Consolidated Rail Corporationv. Darrone (465 U.S. 624

(1984)), the prohibition of discrimination undersuch statutes as Section 504 of the Rehabilitation Act of 1973 is limited to the specific

programs or activities' that are funded by Federal grant money. Under

these decisions recipients of Federal financial assistance are permitted

to discriminate in their other, non-federally-funded programs and

activities.

A bill entitled "The Civil Rights Restoration Act of 1987" (S. 557)

was introduced in the 100th Congress to remove the limitations resulting from the Grove City and Darrone decisions. In April of 1987, the Council was asked to testify before the Senate Committee on Labor and

Human Resources in hearings regarding S. 557. In its testimony, the Council reaffirmed its belief in comprehensive equal opportunity protection for people with disabilities and stated its view that "an absolutely necessary first step is to return the scope of coverage of Section 504 and the other civil rights laws to their status before ihe Supreme

41

Court's ruling in the Grove City case." The proposed Restoration Act

22
has been approved by the Committee on Labor and Human Resources

and is currently awaiting action on the Senate floor.

Although the statutes and pending legislation just discussed represent significant initiatives to expand or clarify nondiscrimination protection for persons with disabilities, they address only a few relatively

narrow issues. The Council's primary recommendation in this area

enactment of a clear and comprehensive statute guaranteeing equal

opportunities for people with disabilities is now beginning to be the

focus of legislative attention and support.

Just as-the recommendations in Toward Independence were a

crystallization of views expressed to the Council by numerous individuals with disabilities at the grass roots level as well as by experts and

organizational representatives, 'the Council sought additional input and

feedback in regard to the actual drafting of a comprehensive equal

opportunity statute. Over the past eighteen months, the Council has

engaged in numerous meetings and _discussions with members of Congress, congressional staff members, officers of national organizations,

grassroots consumers, and other interested parties to explore the content and wording of the statutory proposal. Based on the approach

outlined in the equal opportunity recommendations in Toward Independence, augmented by the comments and advice received, the Council developed a draft of a comprehensive equal opportunity proposal

entitled "The Americans with Disabilities Act of 1988."

The drafting of legislation is a developmental process that reflects

negotiation, compromise, and continuous revision; the Council recognizes that the draft proposal presented on the succeeding pages is not

the final version. The Council-believes, however, that the draft presented herein represents a significant step toward the introduction and

eventual passage of such a statute. The Council is confident that the

"Americans with Disabilities Act" is representative of the need for expanded nondiscrimination protection it has heard repeatedly voiced by

persons with disabilities, and is convinced that the enactment of such

a statute is one key to increased independence and quality of life for

persons with disabilities.

42

23
The Americans with Disabilities Act of 1988

Section by Section Summary

Section 1 Short Title

Provides that the law may be cited as. the Americans with Disabilities Act of 1988.

Section 2 Findings and Purpose

Subsection (a) presents Congressional findings about people with

disabilities, their disadvantaged status in our society, the seriousness

of discrimination against them, and the costliness of such discrimination to our country.

Subsection (b) provides a statement of the overall purposes of the

Act centering on the establishment of a clear and comprehensive National mandate for the elimination of discrimination against persons

with disabilities.

Section 3 Definitions

Provides definitions of key terms used in the Act, including "on the

basis of handicap," "physical or mental impairment," and "reasonable

accommodation." The former are defined consistently with their definition in existing-regulations under Section 504 of the Rehabilitation Act

of 1973. The definition of "reasonable accommodation" is drawn from

. f.`ommodating the Spectrum of Individual Abilities, a report issued by

the U. S. Commission on Civil Rights.

Section 4 Scone of Discrimination Prohibited

Tells what persons and agencies are prohibited fiom discriminating

against persons with disabilities. Provides broad scope of coverage in

line with other types of civil rights laws. Includes, among others, the

Federal Government, Federal grant recipients, Federal contractors and

licensees, employers engaged in interstate commerce having fifteen or

more employees, housing providers covered by Federal Fair Housing

laws, public accommodations, interstate transportation companies,

and State and local governments.

Section 5 Forms of Discriminiation Prohibited

Subsection (a) tells what actions constitute discrimination prohibited by the law. These include various types of intentional and uninten24

43
tional exclusion; segregation; inferior or less effective services, benefits,

or activities; architectural, transportation, and communication barriers; failing to make reasonable accommodations; and discriminatory

qualifications and performance standards.

Subsection (b) specifies that certain actions do not constitute discrimination. These include unequal treatment that is wholly unrelated

to a person's disability, or is the result of the legitimate application of

qualifications and performance standards that are necessary and related to the ability to perform or participate in the essential compo- nents of the job or activity involved. Also explicitly defined as not discriminatory are special programs designed for persons with particular

physical or mental impairments or classes of impairments.

Section 6 Discrimination in Housing

This section provides standards regarding the application of nondiscrimination requirements in housing. The standards are drawn from

the current version of the disability portions of the Federal Fair Housing Amendments bill in the Senate Judiciary Committee. Their primary

focus is upon accessibility in future design and construction of housing.

Section 7 Limitations on the Duties of Accomodation and Barrier

Removal

Subsection (a) provides that barrier removal or reasonable accommodations are not required to be made if to do so would fundamentally

alter or threaten the existence of the program, business, activity, or

facility in question.

Subsection (b) permits a reasonable period of time, not to exceed

two years, for making substantial modifications to existing buildings

and facilities in order to remove barriers. This period may be extended

up to five years through regulations governing particular classes of

buildings and facilities.

Subsection (c) provides that regulations may permit a reasonable

period of time, not to exceed ten years, for making substantial modifications to existing platforms and stations of mass transportation systems.

.11,-

Section 8 Regulations

Subsection (a) calls for the Architectural and Transportation Barriers Compliance Board to issue minimum guidelines for accessibility of

L

44 25
MIMI=11111.

buildings, facilities, vehicles, and rolling stock. Other parts of the Section call for Federal agencies to issue regulations for implementing and

enforcing the requirements of the Act, including the following:

Employment

Equal Employment Opportunity Commission

Housing

Secretary of Housing & Urban Development

Transportation

Secretary of Transportation

Public accommodations

Secretary. of

Federal contractors and subcontractors

Secretary of Labor

State and local governments, and coordination

Attorney General (Department of Ji istice)

Recipients of Federal financial assistance

The agency that provides the Federal assistance

Subsection (i) provides that regulations issued under Section 504

of the Rehabilitation Act of 1973 shall remain in effect unless and until

superseded by regulations under this Act.

Subsection (j) provides that regulations under this Act cannot

provide less protection to persons with physical or mental impairments, perceived impairments, or records of impairment than under

existing Section 504 regulations.

Section 9 Enforcement

Establishes enforcement procedures for the requirements of the

Act. These include administrative remedies, a private right of action,

monetary damages, injunctive relief, attorney's fees, and cutoffs of

Federal funding.

Section 10Effective Date

Provides that the Act shall take effect on the date of its enactment.

26 45
THE AMERICANS WITH DISABILITIES ACT

OF 1988

A DRAFT BILL

To establish a clear and comprehensive prohibition of discrimination on the

basis of handicap.

)3e it enacted by the Senate and House of Representatives of the United atairas,fAre,becLm

SECTION 1. SHORT TITLE.

This Act may be cited as the "Americans with Disabilities Act of 1988".

SEC. 2. FINDINGS AND PURPOSES.

(a) Findings. Congress finds that

(1) some thirty-six million Americans have one or more physical or

mental disabilities, and this number is increasing as the population as a

whole is growing older;

(2) historically, society has tended to isolate and segregate persons

with disabilities, and, despite some improvements, discrimination against

persons with disabilities continues to be a serious and pervasive social

problem;

(3) discrimination against persons with disabilities persists in such

critical areas as employment, housing, public accommodations, education, transportation, recreation, institutionalization, health services,

voting, and access to public services;

(4) every day, people with disabilities encounter various forms of

discrimination, including outright, intentional exclusion, architectural,

transportation, and communication barriers, overprotective rules and

policies, refusal to make modifications to existing facilities and practices,

exclusionary qualification standards and criteria, segregation, and relegation to lesser services, programs, activities, benefits, jobs, or other opportunities;

(5) census data, national polls, and other studies have documented

that people with disabilities, as a group, occupy an inferior status in our

society, and are severely disadvantaged socially, vocationally, economically, and educationally;

(6) persons with disabilities are a discrete and insular minority who

have been saddled with restrictions and limitations, subjected to a history

of purposeful unequal treatmen`, and relegated to a position of political

powerlessness in our society, based upon characteristics that are beyond

the control of such perSons and resulting from stereotypic assumptions

not truly indicative of the individual ability of such persons to participate

27

46
-7

in, and contribute to, society;

(7) the Nation's proper goals regarding persons with disabilities are to

assure equality of opportunity, full participation, independent living, and,

wherever possible, economic self-sufficiency for such citizens; and

(8) the continuing existence of unfair and unnecessary barriers,

discrimination, and prejudice denies people with disabilities the opportunity to compete on an equal basis and to pursue those opportunities for

which our free society is justifiably famous, and costs the United States

billions of dollars-in unnecessary expenses resulting from dependency

and nonproductivity.

(b) PURPOSE. It is the purpose of this Act

(1) to provide a clear and comprehensive National mandate for the

elimination of discrimination against persons with disabilities;

(2) to provide a prohibition of discrimination against persons with

disabilities parallel in scope of coverage with that afforded in statutes

prohibiting discrimination on the basis of race, sex, national.origin, and

religion;

(3) to provide clear, strong, consistent, enforceable standards addressing discrimination against persons with disabilities; and

(4) to invoke the sweep of congressional authority, including its power

to enforce the fourteenth amendment, to regulate commerce, and to

regulate interstate transportation, in order to address the major areas of

discrimination faced day-to-day by people with disabilities.

SEC. 3. DEFINITIONS

For purposes of this Act:

(1) ON THE BASIS OF HANDICAP. The term "on the basis of handicap"

means because of a physical or mental impairment, perceived impairment, or record of impairment.

(2) PHYISCAL OR MENTAL IMPAIRMENT. The term "physical or mental impairment" means

(A) any physiological disorder or condition, cosmetic disfigurement, or

anatomical loss affecting one or more of the following body systems:

(i) the neurological system;

(ii) the musculoskeletal system;

(iii) the special sense organs, and respiratory organs, including

speech organs:

(iv) the cardiovascular system;

(v) the reproductive system;

(vi) the digestive and genitourinary systems;

(vii) the heroic and lymphatic systems;

(viii) the skin; and

(ix) the endocrine system; or

(B) any mental or psychological disorder, such as mental retardation,

28

47
organic brain syndrome, emotional or mental illness, and specific learning

disabilities.

(3) PERCEIVED IMPAIRMENT.The term "perceived impairment" means

not having a physical or mental impairment as defined in paragraph (2),

but being regarded as having or treated as having a physical or mental

impairment.

(4) RECORD OF IMPAIRMENT.The term "record of impairment" means

having a history of, or having been misclassified as having, a mental or

physical impairment.

(5) REASONABLE ACCOMMODATION. The term "reasonable accommodation" means providing or modifying devices, services, or facilities, or

changing standards, criteria, practices or procedures for the the purpose

of responding to the specific functional abilities of a particular person

with a physical or mental impairment in order to provide an equal opportunity to participate effectively in a particular program, activity, job, or

other opportunity.

SEC. 4. SCOPE OF DISCRIMINATION PROHIBITED

(a) IN GENERALNo person shall be subjected to discrimination on the

basis of handicap in regard to

(1) actions, practices, and policies of the Federal Government, any of

the agencies and departments of the Federal Government, or the United

States Postal Service;

(2) actions, practices, and policies of a recipient of Federal financial

assistance;

(3) actions, practices, and policies of a Federal contractor, subcontractor, or licensee;

(4) employer practices, employment agency practices, labor organization practices, and training programs covered by Title VII of the Civil

Rights Act of`1964;

(5) the sale or rental of housing covered by Title VIII of the Civil

Rights Act of 1968;

(6) any public accommodation covered by Title II of the Civil Rights

Act of 1964;

(7) transportation services rendered by a person, company, or agency

engaged in the principal business of interstate transportation of persons, goods, documents, or data; and,

(8) actions, practices, and policies of a State, or agency or political

subdivision of a State.

(b) CONSTRUCTION: Nothing in this Act shall be construed to invalidate or limit any other Federal law or any law of a State or political subdivision of a State, or Jurisdiction that provides greater protection or rights

for persons with physical or mental impairments, perceived impairments,

or records of impairment than are afforded by this Act.

SECTION 5. FORMS OF DESCRIMINATION PROHIBITED

(a) IN GENERAL. Subject to the standards and procedures established

48 29
in sections 6 through 9 of this Act, the actions or omissions described in

this subsection constitute discrimination on the basis of handicap:

(1) SERVICES, PROGRAMS, ACTIVITIES, BENEFITS, JOBS, OR

OTHER OPPORTUNITIES.

(A) IN GENERAL. It shall be discriminatory to subject a person,

directly or through contractual, licensing, or other arrangements, on

the basis of handicap, to any of the following:

(i) Denial of the opportunity to participate in or benefit from

a service, program, activity, benefit, job, or other opportunity.

(ii) Affording a person an opportunity to participate in or

benefit from a service, program, activity, benefit, job, or other

opportunity that is not equal to that afforded others.

(iii) Providing a person with a service, program, benefit, job, or

other opportunity that is less effective than that provided to

others.

(iv) Providing a person with a service, program, activity, benefit, job, or other opportunity that is different or separate, unless

such action is necessary to provide the person with a service,

program, activity, benefit, job, or other opportunity that is as

effective as that provided to others.

(v) Aiding or perpetuating discrimination by providing significant assistance to an agency, organization, or person that discriminates.

(vi) Denying a person the opportunity to participate as a

member of planning or advisory boards.

(vii) Otherwise limiting a person in the enjoyment of any right,

privilege, advantage, or opportunity enjoyed by others.

(B) LEVELS OF ACHIEVEMENT. For purposes of this section,

services, programs,, activities, benefits, jobs, or other opportunities

to be equally effective, are not required to produce the identical

result or level of achievement for persons with physical and mental

impairments, perceived impairments, or records of impairment, and

persons without such impairments, but such services, programs,

activities, benefits, jobs, or other opportunities shall afford persons

with such impairments an equal opportunity to obtain the same

result, to gain the same benefits, or to reach the same level of

achievement, in the most integrated setting appropriate to the needs

of the person.

(C) OPPORTUNITY TO PARTICIPATE. Notwithstanding the

existence of separate or different programs or activities provided in

accordance with this section, a person with a physical or mental

impairment, perceived impairment, or record of impairment shall

not be denied the opportunity to participate in such programs or

activities that are not separate or different.
(D) ADMINISTRATIVE METHODS.A person, cmpany, or

agency may not, directly or through contractual or other arrangements, utilize criteria or methods of administration

(I) that have the effect of discrimination on the basis of hands

cap;

(ii) that have the purpose or effect of defeating or substantially

impairing the accomplishment of the objectives of the services,

programs, activities, benefits, jobs, or other opportunities provided with respect to persons with physical or mental impairments, or records of impairments; or

(iii) that perpetuate the discrimination of others who are subject to common administrative control or are agencies of the

same State.

(2) BARRIERS. It shall be discriminatory

(A) to establish or impose; or

(B) to fail or refuse to remove;

any architectural, transportation, or communication barriers

that prevent or limit the access or participation of persons on

the basis of handicap.

(3) ACCOMMODATION. It shall be discriminatory to fail or refuse

to make a reasonable accommodation to permit an individual with a

physical or mental impairment, perceived impairment, or record of

impairment to apply, have access to, or participate in a service, program, activity, benefit, job, or other opportunity.

(4) STANDARDS AND CRITERIA.It shall be discriminatory to

impose or apply any qualification qtandards, selection criteria, or eligibility criteria that

(A) scre,!..a. (ma, or disadvantage an individual because of a physical or mental impairment, perceived impairment, or record of impairment: or

(B) disproportionately screens out or disadvr.,,,r.zges persons with

particular tnaes of physical zr mental impairments, perceived impairments, or record of impairments;

unless such criteria can be shown to be necessary and substantially

related to ability to perform or participate in essential components of

the particular ,ervice, program, activity, benefit, job, or other opportunity.

(5) Relationships or Associations. It shall be discriminatory to

exclude or otherwise deny equal services, programs, activities, benefits,

jobs, or other opportunities to a person because of the relationship to,

or association of, that person with another person that has a physical

or mental impairment, perceived impairment, or record of impairment.

31

50
(b) ACTIONS NOT DISCRIMINATORY. It shall not be considered to be

discrimination on the basis of hanciicap to exclude or otherwise deny

equal services, programs, activities, benefits, jobs, or other opportunities

to a person

(1) for reasons wholly unrelated to the existence of or consequences

of a physical or mental. impairment, perceived impairment, or record of

impairment;

(2) based on a legitimate application of qualifications standards,

selection criteria, performance standards, or eligibility criteria that are

both necessary and substantially related to the ability to perform or

participate in the essential components of the particular job, program,

activity, or opportunity, and such performance or participation cannot

be accomplished by a reasonable accommodation.

SEC. 6. DISCRIMINATION IN HOUSING.

(a) IN GENERAL. Notwithstanding the requirements of section 5(a), it

shall be an act of discrimination in regard to housing

(1) to discriminate in the sale or rental, or to otherwise make unavailable or deny, a dwelling to any buyer or renter because of a physical or mental impairment, perceived impairment, or record of impairment of

(A) such buyer or renter;

(B) a person residing in or intending to reside in such dwelling

after it is so sold, rented, or made available; or

(C) any person associated with that buyer or renter.

(2) to discriminate against any person in the terms, conditions, or

privileges of sale or rental of a dwelling, or in the provision of services

or facilities in connection with such dwelling, because of a physical or

mental impairment, perceived impairment, or record of impairment of

(A) such person;

(B) a person residing in or intending to reside in such dwelling

after it is so sold, rented, or made available; or

(C) any person associated with such person.

0) REMOVAL OF BARRIERS IN HOUSING. For purposes of subsection

(a), discrimination includes

(1) a refusal to permit, at the expense of a person with a physical or

mental impairment, perceived impairment, or record of impairment,

reasonable modifications of existing premises occupied, or to be occupied, by such person if such modifications may be necessary to afford

such person full enjoyment of the premises;

(2) a refusal to make reasonable accommodations in rules, policies,

practices, or services, when such accommodations may be necessary to

afford such person equal opportunity to use and enjoy a dwelling; or

32

51
(3) a failure to design and construct qualified multifamily dm:llings

for first occupancy after the date that is 30 months after the date of

enactment of this Act, in such a manner that

(A) the public and common use portions of such dwelling are

readily accessible to, and usable by, persons with physical and

mental impairments;

(B) all the doors into and within all premises within such dwellings are sufficiently wide to allow passage by persons in wheelchairs; and,

(C) all premises within such dwellings contain basic universal

features of adaptive design.

(c) DEFINITION.As used in this section the term "qualified multifamily

dwellings" means

(1) buildings consisting of two or more units if such buildings have

one or more elevators; and

(2) those units in other buildings consisting of two or more units

that are on the ground floor.

SEC. 7. LIMITATIONS ON THE DUTIES OF ACCOMMODATION AND BARRIER REMOVAL

(a) EXISTENCE THREATENING ALTERATIONS.

(1) IN GENERAL. The failure or refusal to remove architectural,

transportation, and communication barriers, and to make reasonable

accommodations required under subsection 5(a) shall not constitute an

unlawful act of discrimination on the basis of handicap if such barrier

removal would fundamentally alter the essential nature, or threaten the

existence of the program, activity, business, or facility in question.

(2) OTHER ACTION. in the event that barrier removal is not required because it would result in a fundamental alteration or threaten

the existence of a program, activity, business, or facility, there shall

continue to be a duty to conform to other requirements of this Act and

to take such other actions as are necessary to make a program, activity, or service, when viewed in its entirety, readily accessible to and

usable by persons with physical.and mental impairments, perceived

impairments, or records of impairments.

(b) TIME FOR ALTERATIONS.

(1) IN GENERAL. If substantial modifications to existing buildings

and facilities are necessary in order to remove architectural, transportation, and communication barriers, as required under subsection 5(a),

such modifications shall, unless required earlier by other law or regulation, be made within a reasonable period of time, not to exceed 2 years

from the date of enactment of this Act.

(2) EXCEPTION. Regulations promulgated pursuant to section 8 of

this Act may allow up to 5 years from the effective date of this Act

33

52
f

where reasonably necessary for the completion of such modifications to

particular classes of buildings and facilities.

(c) MASS TRANSPORTATION.

(1) IN GENERAL.If substantial modifications to existing platforms

and stations of mass transportation systems are necessary in order to

remove architectural, transportation, and communication barriers, as

required under subsection 5(a)(2) of this Act, regulations promulgated

pursuant to section 8 of this Act may, unless required earlier by other

law or regulation, allow a reasonable period of time, in no event to

exceed ten years from the effective date of this Act, for such modifications to be made.

(2) EXCEPTION. This subsection shall not affect the duty of providers of transportation services to conform to other requirements of

this Act, including the requirement of removing other types of architectural, transportation, and communication barriers, and the applicator

of such requirements to vehicles and rolling stock.

SEC. 8. REGULATIONS.

(a) ARCHITECTURAL AND TRANSPORTATION BARRIERS COMPLIANCE

BOARD. Within 6 months of the date of enactment of this Act, the

Architectural and Transportation Barriers Compliance Board shall issue

minimum guidelines, to supplement the existing Minimum Guidelines

and Requirements for Accessible Design, to establish standards for the

architectural, transportation, and communication accessibility of buildings, facilities, vehicles, and rolling stock subject to the requirements of

this Act.

34

(b) ATTORNEY GENERAL.

(1) *IN GENERAL.Within 1 year of the date of enactment of this

Act, the Attorney General shall promulgate regulations for the implementation and enforcement of the requirements of this Act as it applies

toStates and agencies and political subdivisions of States.

(2) MINIMUM GUIDELINES. The Attorney General of the United

States shall coordinate the timely development of regulations required

under this section and shall issue, within 6 months of the date of

enactment of this Act, minimum guidelines for the development of such

regulations.

(c) EQUAL EMPLOYMENT OPPORTUNITY COMMISSION.

(1) EMPLOYER PRACTICES.

(A) IN GENERAL.Within 1 year of the effective date of this Act,

the Equal Employment Opportunity Commission shall promulgate

regulations for the implementation and enforcement of the requirements of this Act as it appliei to employer practices.

(B) PROHIBITIONS. The regulations promulgated under sub53
paragraph (A) shall prohibit discrimination in regard to job application procedures, the hiring and discharge of employees, employee

compensation, job training, and other terms, conditions, and privileges of employment.

(2) REQUIREMENTS. The regulations promulgated under subparagraph (A) shall include, for all covered employers having fifteen or

more employees, a requirement of outreach and recruitment efforts to

increase the workforce representation of individuals with physical or

mental impairments, or records of impairments, and shall establish a

process and timelines for the development, implementation, and periodic revision of such outreach and recruitment efforts.

(3) PREEMPLOYMENT.INQUIRIES.

(A) IN GENERAL. The regulations promulgated under paragraph (1)(A) shall include a requirement that employers may not

conduct a preemployment medical examination or may not make

preemployment inquiry Ian applicant as to whether the person has

a physical or mental ii,vairment, perceived impairment, or record of

impairment, or as to the nature or severity of such impairment.

(B) PERMITTED INQUIRIES.-AN EMPLOYER

(i) may make a preemployment inquiry into the ability of an

applicant to satisfy legitimate qualifications standards, selection

criteria, performance standards, or eligibility criteria as permitted under section 5(b)(2);

(ii) may condition an offer of employment on the results of a

medical examination conducted prior to the entrance to duty of

the applicant, if

(I) all entering employees are subjected to such an examination regardless of physical or mental impairment,

perceived impairment, or record of impairment; and

(II) the results of such an examination are used only in

accordance with the requirements of this section;

(iii) taking remedial action to cornet the effects of past discrimination or engaged in outreach and recruitment efforts to

increase the participation of persons with physical or mental

impairments may inv:'..., applicants for employment to indicate

whether and to what extent they have a physical or mental

impairment, if

(I) the employer states clearly on any written questionnaire used for employment purposes, or makes clear orally if

no written questionnaire is used, that the information requested is intended for use solely in connection with its

remedial action or outreach and recruitment activities; and

(II) the employer states clearly that the information is

being requested on a voluntary basis, that such information

35

54
36

will be kept confidential as provided in subparagraph (C),

that refusal to provide such information will not subject the

applicant or employee to any adverse treatment, and that

such information will be used only in accordance with the

requirements of this section.

(C) CONFIDENTIALITY.Information, as to the medical condition

or history of the applicant, obtained in accordance with this paragraph shall be collected and maintained on separate forms that

shall be accorded the same confidentiality as medical records, ex- cept that

(I) supervisors and managers may be informed of restrictions

on the work or duties of persons with physical or mental impairments and of necessary accommodations for such persons;

(ii) first aid and safety personnel may be informed, where

appropriate, if such a condition may require emergency treatment; and

(iii) government officials investigating compliance with this Act

shall be provided relevant information on request.

(d) SECRETARY OF HOUSING AND URBAN DEVELOPMENT.Within 1

year of the effective date of this Act, the Secretary of Housing and Urban

Development shall promulgate regulations for the implementation and

enforcement of the requirements of this Act as it applies to sellers, landlords, and other providers of housing.

(e) SECRETARY OF TRANSPORTATION.

(1) IN GENERAL.Within 1 year of the effective date of this Act, the

Secretary of Transportation shall promulgate regulations for the implementation and- enforcement of the requirements of this Act as it

applies to State and local transit systems and to those engaged in the business of interstate transportation.

(2) STANDARDS. The 'regulations promulgated under paragraph

(1) shall include standards regarding the accessibility of vehicles and

rolling stock consistent with the requirements of paragraph (3).

(3) REQUIREMENTS.With respect to State and local transit systems, rail and-light rail services, and bus companies, the standards

issued under paragraph (2) shall

(A) ensure that all vehicles or rolling stock that are purchased,

leased, renovated, or otherwise placed into service after the date of

enactment of this Act shall be accessible to and usable by persons

with physical or mental impairments, including wheelchair users;

(B) permit a reasonable period of time, not to exceed 7 years, for

such transportation operators to purchase, acquire, or modify sufficient vehicles and rolling stock so that the peak fleet has at least 50

percent of vehicles and rolling stock that are accessible to and

usable by persons with physical or mental impairments, including

55
wheelchair users; and

(C) ensure that the use of paratransit and other specialized

transportation services for persons with physical or mental impairmentS shall be used as a supplement to other forms of transportation, but shall not affect the requirement that transportation systems and services available to members of the public shall be accessible to ancrusable bypersons with physical or mental impairments,

including wheelchair users.

(f) SECRETARY OF COMMERCE. Within 1 year of the effective date of

this Act, the Secretary of Commerce shall promulgate regulations for the

implementation 'and enforcement of the requirements of this Act as it

applies to places of public accommodation.

(g) SECRETARY OF LABORWithin 1 year of the effective date of this

Act, the U.S. Secretary of Labor shall promulgate regulations for the implementation and enforcement of the requirements of this Act as it applies to recipients of Federal contracts and subcontracts.

(h) FEDEPAL AGENCIES. In addition to the regulations required pursuant to paragraphs (a) through (g), Federal executive agencies shall issue,

within 1 year of the date of enactment of this Act, such additional regulations as shall be necessary to implement and enforce the requirements of

this Act as such reciirements apply to programs and activities to which

such agencies provide Federal financial assistance.

(i) REHABILITATION ACT OF 1973. Regulations of Federal agencies

issued under section 504 of the Rehabilitation Act of 1973 shall remain in

effect unless and until they are superseded by regulations promulgated

under this Act.

(j) LEVEL OF PROTECTION.In no event shall regulations promulgated

under this Act provide less protection against discrimination to persons

with a physical or mental impairment, perceived impairment, or record of

impairment than under existing regulations for the implementation of

section 504 of the Rehabilitation Act of 1973.

SEC. 9. ENFORCEMENT

(a) ADMINISTRATIVE ACTIONS.

(1) IN GENERALAny person who believes that he or she or any

specific class of individuals is being or is about to be subjected to discrimination on the basis of handicap in violation of the Act, shall have

the right, by himself or herself, or by a representative, to pursue such

administrative enforcement procedures and remedies as are available in

connection with the regulations issued pursuant to Section 8 of this

Act.

(2) REMEDY.Agencies enforcing such regulations shall have the

authority to order all appropriate remedial relief, including compliance

orders, cutoff of Federal funds, rescission of Federal licenses, monetary

56 37
38

damages, and back pay.

(b) CIVIL ACTIONS.

(1) RIGHT TO FILE. Any person who believes that he or she or

any specific class of individuals is being or about to be subjected to

discrimination on the basis of handicap in violation of this Act, shall

have a right, by himself or herself, or by a representative, to file a civil

action for injunctive relief, monetary damages; or both in a district

court of the United States.

(2) ADMINISTRATIVE ENFORCEMENT.The exhaustion of administrative enforceinent procedures and remedies as contemplated in

section 9(a) shall not be a prerequisite to the filing of a civil action

under this subsection, except in regard to employer practices, employ- ment agency practices, labor organization practices, and training programs, covered by paragraph 4(a)(1) of this Act, for which such exhaustion shall be required unless

(A) administrative enforcement procedures and remedies as

contemplated in section 9(a) are not available; or

(B) such enforcement procedures are not concluded within 180

days after the filing of a complaint of discrimination prohibited

under this Act.

(c) ADDITIONAL EVIDENCE.In any action brought under this section, the court shall receive the records of the administrative proceedings, shall

hear additional evidence at the request of a party, and, basing its decision

on the preponderance of the evidence, shall grant such reliefas the court

deems appropriate.

(d) JURISOICTION.The district courts of the United States shall have

jurisdiction of actions brought under this Act without regard to the

amount in controversy.

(e) IMMUNITY. A State shall not be immune under the Eleventh

Amendment of the Constitution of the United States from suit in Federal

Court for a violation of this Act. In a suit against a State for a violation of

the requirements of this Act, remedies (including remedies both at law

and in equity) are available for such a violation to the same extent as

such remedies are available for such a violation in a suit against any

public or private entity other than a State.

(f) ATTORNEYS FEES. In any action or administrative proceeding

commenced pursuant to this section, the court, or agency, in its discretion, may allow the prevailing party, other than the United States, a

reasonable attorney's fee in addition to costs, and the United States shall

be liable for costs the same as a private person.

(g) BURDEN OF PROOF. In any administrative proceeding or civil

action brought under this Act, the burden of proving the legitimacy ofany

qualifications standard, selection criteria, or eligibility criteria at issue in

a case, and of proving the defense that a particular reasonable accommo0 7
dation or removal of an architectural, transportation, or communication

barrier would fundamentally alter or threaten the existence of the program, activity, business, or facility in question, shall be on the person,

agency, or entity alleged to have committed an act of discrimination, and

shall not be on the complainant.

SEC. 10. EFFECTIVE DATE.

This Act shall become effective on the date of enactment.
Consumer Leverage of U.S. Government

2. The law should direct the Federal Government to use its leverage as a ccinsumer of goods and services to set standards and

timelines for requiring that businesses and companies from

which it purchases or rents goods, services, or facilities shall

make such goods, services, and facilities accessible, available

to, and usable by people with disabilitie3 on a nondiscriminatory basis.

111 Accomplishments

The first five recommendations in Toward Independence concerned the

enactment of the Americans with Dkiabilities Act and described the

elements that such a law should contain. The remaining five legislative

recommendations in regard to equal opportunity laws involve specific concerns that can be addressed by separate pieces of legislation or

amendments.

The first of these, set out above, involves a legal mandate to require U.S. Government agencies to use their "consumer clout" as purchasers and lessors of numerous types of services, merchandise, and facilities

in order to persuade businesses they deal with to make their products and services accessible to persons with disabilities. As proposed by the Council in Toward Independence, this initiative pertains to a wide

array of goods and services obtained by the Government from private

companies, including conference and meeting room rentals, airline and

train tickets, fental cars,'hotel rooms, and office equipment.

Congress has not yet enacted legislative directives requiring the Federal Government to limit its purchases and rentals to equal access companies on an across-the-board basis.

To date, the Federal Government's purchasing power has been

invoked to apply pressure for accessibility in a single but increasingly

important area electronic equipment. In February of 1986, as Congress was considering the amendments to the Rehabilitation Act of

1973 that would culminate in the Rehabilitation Act Amendments of

1986 (Public Law 99-506), the Council recommended the addition of a

new section to the Act to require that all office automation equipment

obtained by the Federal Government be accessible to and usable by

persons with disabilities. In response to this proposal, Congress included Section 603 in the Rehabilitation Act Amendments of 1986.

This provision adds a new Section 508, entitled "Electronic Equipment Accessibility," to the Rehabilitation Act of 1973. It requires the National Institute on Disability and Rehabilitation Research and the General

Services AdMinistration in consultation with the electronics industry to

establish "guidelines for electronic equipment accessibility designed to

40 59
insure that handicapped individuals may use electronic office equipment with or without special peripherals." After September 30, 1988,

such guidelines are to be adopted by the Administrator of General

Services, and complied with by Government agencies in their purchases or leases of electronic office equipment. Section 508 represents

a narrow but quite significant implementation of the Council's recommendation that Government procurements of services, goods, and

facilities make accessiLility to persons with disabilities a condition

precedent.

Discrimination in Medical Services

3. The law should apply to discrimination in medical services.

Accomplishments

This recommendation was primarily in response to the decision of the

United States Court of Appeals for the Second Circuit in United States

v. University HoSp., State U. of New York (729 F.2d 144 (2d Cir. 1984)),

in which the court ruled that Section 504 of the Rehabilitation Act of

1973 does not apply to medical treatment. Subsequent to the publication of Toward Independence, the United States Supreme Court had

occasion to review the rationale of the University Hospital decision in a

separate case, Bowen v. American Hospital Association (106 S. Ct. 2101

(1986)). The regulations regarding treatment of handicapped infants, at

issue in both cases, were ultimately struck down by the Supreme

Corrt, but not because Section 504 does not apply to medical services.

On _he contrary, the Court expressly ruled that "handicapped infants

are entitled to 'meaningful access' to medical services provided by hospitals, and that a hospital rule or State policy-denying or limiting such

access would-be-subject-to challenge under Section 504" (106 S. Ct. at

p. 2111 (1986)). The Section 504 regulations regarding medical treatment of handicapped infants were invalidated because the Secretary of

Health and Human Services was ruled to have overstepped the extent

of his authority to address discrimination under Section 504 by providing overly intrusive procedures and failing to provide adequate documentation of the problem being addressed and of the necessity for the

procedures initiated.

Currently, instances of alleged denials of medical treatment to

infants with disabilities are much more likely to be dealt with under

the Child Abuse Amendments of 1984 (Public Law 98-457) than under

Section 504. These Amendments and the regulations issued to implement them (45 C.F.R. 1340.15) provide standards regarding the rendering of medical treatment to handicapped infants and establishing

when the failure to provide treatment constitutes child abuse or neglect.

60 41
Because of the subsequent developments in legislation, regulationsand case law, the objectives underlying the Council's recommendation in regard to coverage of medical services have largely been

achieved.

Bill of Rights for Persons with Disabilities

4. An enforceable Bill of Rights for Persons with Disabilities

should be enacted.

111- Accomplishments

The Council's proposal of a Bill of Rights for persons with disabilities

has been the subject of some legislative advancement, but the initiatives have not been as broad nor as forceful as the Council recommended. The Council proposed that a Bill of Rights be created for persons with all types of disabilities. The Council suggested that the rights

listed, be patterned after the existing Developmental Disabilities Bill of

Rights and that proposed by the Task Panel on Legal and Ethical Issues of the President's Commission on Mental Health. A key feature of

the Council's recommendation was that- such a Bill of Rights 'should

explicitly be made enforceable administratively and in the Federal

courts" (Toward Independence, Appendix, p. A-57).

No Bill of Rights for the overall class of persons with disabilities as

a whole has yet been enacted. A significant development was the passage of the Protection and Advocacy for Mentally M Individuals Act of

1986 (Public Law 99-319), which_contains a "Restatement- of-Bill -of

Rights fot -Mental ffealth Patients." Reaffirming statements of rights

contained in Title V of the Mental Health Systems Act, these provisions

direct each State to review its mental health laws and revise them if

necessary. In doing so, the States are to "take into account the recommendations of the President's Commission on Mental Health" and a

lengthy list of rights regarding conditions of treatment and prerequisites to confinement.

The list of rights contained in this Act is very useful and consistent

with the Council's concept of a Bill of Rights. Its primary shortcoming,

however, is that the list of rights appears to be unenforceable. The list

is simply one that States are to "take into account" as they review and

revise their laws. A subsequent provision provides that the Act "shall

not be construed as establishing any new rights for mentally ill individuals" (Section 301). The lack of enforceability (which is also a problem with the Developmental Disabilities Bill of Rights) makes this list of

rights somewhat less than a true Bill of Rights.

42

61
O Private Right of Action Under Section 503

5. Equal opportunity obligations upon Federal contractors and

subcontractors should be male enforceable by a private right

of action.

Accomplishments

Section 503 of the Rehabilitation Act of 1973 places affirmative action

and nondiscrimination requirements -upon Federal contractors having

contracts in excess.of $2,500. The enforcement of such requirements is

assigned to the Department of Labor. The weight of judicial precedent

is that an aggrieved individual subjected to discrimination in violation

of Section 503 does not have a right to file a lawsuit to challenge such

illegal discrimination. In Toward Independence, the Council echoed

views expressed for many years by persons with disabilities and legal

commentators when it proposed that Section 503 be made enfbrceable

by a private Tight of action. To date, Congress-has not yet followed up

on this proposal. A private right of action for individuals complaining of

discrimination on the basis of handicap would be provided under the

Council's proposed )mprehensive equal.opportunity law.

O Advocacy System and Legal Fees

6. To assure the recognition and implementation of the rights established in this equal opportunity jaw, Congress should authorize an expanded Protection and Advocacy System in each

State to protect and advocate for the rights of individuals with

-alltypes -ofdisabilitiesregardle_ss of the age of onset;, Congress should authorize the awarding of reasonable attorneys

fees and litigation expenses to prevailing complainants.

Accomplishments

Significant legislative progress has occurred in regard to the Council's

recommendations of an expanded Protection and Advocacy System and

for the awarding of attorneys fees to successful litigants in lawsuits by

individuals with disabilities and their families. The Protection and

Advocacy for Mentally 111 Individuals Act of 1986 (Public Law 99-319)

provides authority and funding for expanding the responsibilities of the

existing developmental disabilities Protection and Advocacy Systems in

each State to encompass protection and advocacy of the rights of mentally ill individuals. In addition, Section 112(a) of the Rehabilitation Act

of 1973 (as amended by Public Law 98-221) establishes a program of

grants to the States for the establishment and operation of "client

assistance programs" for vocational rehabilitation clients. Section

112(b) makes funding of State vocational rehabilitation programs con62 43
tingent upon the existence of a client assistance program that "has the

authority to pursue legal, administrative, and other appropriate reme- dies to ensure the protection of rights of handicapped individuals who

are receiving treatments, services, or rehabilitation under this chap- ter."

The addition of the protection and advocacy systems for mentally

ill individuals and the vocational rehabilitation client assistance pro- grams to the previously,existing protection and advocacy systems for persons with developmental disabilities represents a very significant expansion of advocacy services for individuals with disabilities. Such

expansion has not yet equaled the scope of the Council's recommendation of advocacy services for persons with all types of disabilities, but it certainly reflects vigorous congressional action in that direction.

Attorneys fees and litigation expenses for people with disabilities and their families who successfully prove that they have been denied

their rights would be a specific feature of the Council's proposed com- prehensive equal opportunity law for persons with disabilities. To date

there has been one major legislative advance regarding these issues

the enactment of the Handicapped Children's 2rotection Act of 1986

(Public Law 99-372). This law provides that a court "may award reasonable attorneys' fees as part of the costs to the parents or guardian

of a handicapped child or youth who is the prevailing party" :n a law- suit brought under the provisions of the Education of the Handicapped Act. The enactment-of this provision constitutes a critical milestone for

children with disabilities and their parents in providing, them realistic access to the expensive legal representation sometimes necessary for contec.ng inappropriate special educational placements and pro-

-grams.

44
Employment has consistently headed the list of major concerns of

persons with disabilities in this country. As is true for most other

Americans, a major prerequisite to economic self-sufficiency and quality of life is a job. Employment offers the possibility of dramatically

improving an individual's lifestyle, while at the same time resulting in

tremendous financial savings for the Government. Perhaps most important is the ability of gainful employment to facilitate the integration

of persons with disabilities into all facets of community life. In fact,

employment for persons with disabilities is critical in determining

independence. Recognizing the seriousness of barriers to employment

opportunities for persons with disabilities, employment was selected as

one of the ten areas in the Council's report, Toward Independence.

In order to explore and fully understand' the problems of employment for persons with disabilities, the Council conducted a series of

forums throughout the United States to gather data from consumers,

parents, service providers, experts, and others. In addition to public

forums, the Council initiated two Harris polls.

The first Harris poll examined overall attitudes and life experiences

of persons with disabilities, including the area of employment. Findings

from the first Harris poll indicated that:

Not working is perhaps the truest definition of what it means to be

disabled. Two-thirds of all disabled Americans between the ages of

16 and 64 are not working. Only one in four work full-time, and another 10% work part-time....Furthermore, unemployment among

persons with disabilities as a group is a bigger problem than among

any other_demographic_group_of working-age Americans. (p. 47)

Another significant finding from the first Harris poll was that 66

percent of working-age persons with disabilities, who are not working,

want to have a job. This overwhelming absence from the labor force of

people with a strong desire to work is a tragic failure of the American

dream.

Data from the first Harris poll coupled with the importance of

employment in the lives of persons with disabilities generated a second

Harris poll devoted solely to employment, "Employing Disabled Americans.

Based on interviews with over 900 companies, the purposes of the

second survey were to determine what employers across the country

were doing to employ persons with disabilities and to return persons

with disabilities to work; what experiences employers had had with

persons with disabilities; what barriers prevented employers from

64 45
hiring persons with dsabilities; and what steps the public and private

sectors could take to increase the employment of persons with disabilities.

A great majority of employers rated the performance of disabled

workers as "good to excellent." Another significant finding dispelled a common myth about the cost of hiring a disabled person: 75 percent of

managers said that the cost of employing persons with disabilities is no

greater than the cost of hiring non-disabled workers. Most employers appeared to be willing to consider the employment of more disabled

people if they are qualified.

Unfortunately, data from the survey indicated that without some

new stimulus, the employment of disabled people is unlikely to increase significantly. Most managers thought that their company was already doing enough to employ disabled people and should not make

greater efforts to do so. Employers gave the hiring of disabled people a

lower priority than the hiring of people from minority groups and eld- erly persons. Furthermore, disabled people are the least likely to be viewed as .an excellent source of employees.

Finally, several steps that leaders in government, business, and

voluntary organizations could take to increase the employment of per- sons with disabilities were suggested: increase job training programs; make available widespread information on qualified applicants; create

programs to make employers aware of agencies which have disabled

applicants; and encourage disabled people to apply for,positions.

Data from both Harris polls regarding overcoming barriers to employment for persons with disabilities strongly reinforce the eight rec- ommendations made by the Council in Toward Independence. These

recommendations addressed a variety of issues, including transition

from school to work, supported employment, private sector initiatives, job training, and job development and placement.

During the 99th Congress, legislation was passed that included

several of the Council's major recommendations in the areas of sup- ported employment, transition, and tax incentives foremployers. The Council believes that these legislative changes represent unprece- dented gains in terms of expanded employment opportunities for persons with disabilities. Additional congressional action is still needed to

implement the full range of the Council's recommendations, including

the establishment of model centers on employment and return-to-work

programs, and elimination of income eligibility requirement for persons with disabilities under the Job Training Partnership Act.

In addition to legislative activity, the Council has played a major

role with the promulgation of regulations pursuant to the Rehabilitation Act Amendments of 1986 by holding numerous meetings and

46 65
teleconferences of consumers and service providers to solicit input and

feedback.

A detailed summary of progress toward the eight recommendations

follows.

Recommendations from Toward Independence

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 plaiming:rrocess.

2. Congress should direct the Department of Education to

strengthen regulations requiring the involvement of education

coordinators and vocational rehabilitation counselors in the

transition process.

Accomplishments

Transition is an outcome-oriented process encompassing a broad range

of experiences and services resulting in competitive employment. In

Toward Independence, the Council used the transitional model developed by the Office of Special Education and Rehabilitative Services

(OSERS) which represents a bridge between the security of school and

the risks and opportunities of adulthood., It is based on sound preparation in high school, adequate support mechanisms upon leaving

school, and secure opportunities and services, as needed, in adulthood

(Will, 1984). The Council believes that a coordinated, well-planned

collaborative transition process will lead to successful employment for

students with disabilities.

Although the precise Council recommendatioas regarding transition were not enacted by the 99th Congress, the intent of the recommendations was included in the Education of the Handicapped Act

1986 Amendments (Public Law 99-457).

Title III Discretionary Programs, Section 626, which provides for

transitional services to handicapped youths, was amended in two

ways. First, it clarifies the policy that transitional programs can serve

not only children and youth currently in school, but also youth who

have recently left school. Second, the legislation extends transitional

services to include "services provided to a handicapped child throughout his or her years in school, not simply during the last two or three

years before he or she graduates out of the special education system."

Both of these provisions clearly reflect the Council's conviction that

transitional services need to be improved and expanded to increase

66 47
employment opportunities for youth with disabilities.

In addition to these legislative changes, the Council co-sponsored,

with the Office of Special Education and Rehabilitative Services and

the President's Committee on Employment of the Handicapped, a narent-employer conference on best practices in transitional program

ming. The conference brought together parents, employers, young

people with disabilities, service providers, educators, and representatives of Federal, State and local governments to discuss employment

opportunities and to develop strategic. and guidelines that parents can

use when assisting their daughters or sons with special needs in seeking employment. Conference proceedings, published in November

19E37, outlined strategies and guidelines developed by participants for

use by parents and employers in promoting job development, placement, and retention.

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.

Accomplishments

Defined simply, supported work refers to paid employment for some

individuals with severe disabilities who require ongoing support and

assistance in a work setting. Recognizing the increased importance of

the role of supported work in the lives of severely disabled individuals,

Congress incorporated the Council's recommendation regarding supported work into the 1986 Rehabilitation Act Amendments (Public Law

99-506). Furthermore, a new State Grant Program was added, Part C

of Title VI, entitled "Supported Employment Services for Individuals

with Severe Handicaps." This section establishes supported employment as a State formula-grant program, supplementing the Title I

allocation.

Another key provision in the Rehabilitation Amendments is the

definition of "supported employment" which is compatible with the

definition used in Toward Independence.

"Supported employment" means competitive work in integrated settings

(A) for individuals with severe handicaps for whom competitive employment has not traditionally occurred, or

(B) for individuals for whom competitive employment has been interrupted or intermittent as a result of severe disability, and, who because of

their handicaps, need ongoing support services to perfo.m such wcrk.

48
.ft

In addition to persons with developmental disabilities and mental

retardation, the definition includes transitional services for persons

with chronic mental illness and persons with physical disabilities.

Other key changes related to supported employment include the

addition of supported employment under Title III as an eligible funded

service and the addition of supported employment as an authorized

vocational rehabilitation service and outcome under Title I.

Establishment of supported work programs will substantially reduce the number of severely disabled persons residing in residential

facilities and allow these individuals to become employed in competitive work settings within 'he community. Supported employment programs also will provide persons with severe disabilities an opportunity

to become independent, taxpaying citizens.

The regulations governing supported employment under the Rehabilitation Act Amendments of 1986 have been finalized and approved.

At the beginning of Fiscal Year 1988 rehabilitation agencies in each

State received funding to provide supported employment services and

programs.

Federal Support

for Private Sector Initiatives

4. Congress should extend anci expand the Targeted Jobs Tax

Credit Program (Deficit Reduction Act of 1984, Public Law 98-

364).

Accomplishments

The Targeted Jambs Tax Credit (TJTC) Program offers employers a credit

against their tax liability for hiring individuals from nine target groups

who traditionally have had difficulty in obtaining and holding jobs. The

Targeted Jobs Tax Credit Program has created work opportunities for

persons with disabilities and is continuing to create a favorable climate

throughout the business community for hiring persons with disabilities,

The success of incentives for employers was corroborated in the

second Harris poll: 68 percent of the managers interviewed indicated

that a government policy subsidlirtg the salaries of handicapped employees for a trial period would L. ,ffective incentive for employers

to increase the hiring of persons vo isabilities.

Although the TJTC program was 1,, ) expire on December 31, 1985,

the Tax Reform Act of 1986, Public 'idaw 99-514, reauthorized the pro68 49
1=MMIMOr

gram for a three-year period, through December 31, 1988. The same

nine target groups were authorized, one of which was persons with

disabilities who are referred to employers from a State vocational rehabilitation office or Veterans' Administration program.

Major changes in the TJTC program under the new legislation

relate to the amt. at of credit and retention period:

a. Amount of CreditThe credit for first year's wages is limited to 40 percent of

to $6,000 earned, with a maximum credit of $2,400. The tax credit for second

year wages is eliminated. Wages paid during the retention period (see b) apply if

the minimum retention requirement is met. Credit for economically disadvantaged summer youths remains at 85 percent of up to $3000 for a maximum credit

of $2,500 for each individual.

b. Retention PeriodA minimum employment period of 90 days or 120 hours of paid

employment (14 days or 20 hours in the case of economically disadvantaged

summer youth employees) is required before the employer can claim the tax

credit.

The TJTC program gives employers a financial incentive while providing disabled job seekers an opportunity to demonstrate their capabilities. According to a F. Ludy based on FY 1985 TJTC usage, the Committee on Employment Opportunities found a nationwide savings in public

assistance payments of $418,000,000. Tax credits such as the Targeted Jobs Tax Credit Program are cost-beneficial by contributing

directly to a reduction in government payment to people with disabilities, including those on Social Security (SSDI and SSI), Aid to Families

with Dependent Children (AFDC), and the cost of institutionalization.

The amount of money paid in taxes by disabled employees assisted by

this program may offset the tax credits allowed to employers. In addition to the economic benefits which will accrue to the Nation as a result of the Targeted Jobs Tax Credit Program, it also promotes selfrespect and independence for persons with disabilities

Although the TJTC program was extended for three years and

made retroactive to January 1, 1986, this program was not expanded

in as broad a way as the Council recommended. Therefore, the Council

will continue to monitor this legislation and determine the best way to

effect the necessary changes.

5. Congress should make section 190 of the Internal Revenue

Code permanent and expand it to a maximum amount of $75,000 per year.

IM Accomplishments

Section 190 of the Internal Revenue Code allows an employer a tax

50

69
deduction for expenses incurred in connection with the elimination of

-architectural and transportation barriers for persons with disabilities

and elderly perSons at the place of business.

The Tax Reform Act of 1986 (Public Law 99-514) made Section 190

a permanent provision, as-recommended by the Council. Section 130

was made retroactive to January 1, 1986. The amount that an employer can deduct in any taxable year remains $35,000. Qualified

expenses include only those specifically attributable to the removal of

existing,barriers.

Once again, data from the Harris poll on employers confirmed the

wisdom of this legislative change. Approximately 74 percent of the

managers surveyed agreed that a policy by the Government to provide

additional tax deductions for or share in the cost of expensive accommodations would increase the employment of persons with disabilities.

6. Congress should develop innovative and effective incentives to

promote the establishment of return-to-work programs.

Accomplishments

Most managers surveyed by the Harris agency were supportive of and

committed to the rehabilitation of employees who become disabled.

Approximately three-quarters of each of the three types of managers

surveyed responded that employers have a responsibility to rehabilitate

disabled employees. The large majority felt that the rehabilitation of

disabled employees is cost-effective.

The provision of incentives to businesses that provide return-towork programs would increase the return-to-work of a significant number of persons who become disabled. However, the Council's recommendation on return-to-work programs was not included in legislation

enacted by the 99th Congress. The Council will continue to attend to

this important recommendation.

Although these porgrams are relatively new, the Council believes

that return-to-work programs that involve employees in the early

stages of rehabilitation will enable a substanthl number of employees

ti maintain and return to employment. Incentives to companies will

encourage more employers to develop return-to-work programs, thus

reducing the number of persons with disabilities not forking. This will

eventually reduce the amount of money spent on income support progams.

70 51
Job Development and Placement

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

III Accomplishments

Many persons with disabilities experience difficulty in finding suitable

employment. Job development and placement are fundamental rehabilitation services to assist persons who are vocationally handicapped

by a disability to secure employment consistent with their vocational

assets and limitations. Job development is the process of developing

the appropriate job site; placement is actually obtaining the job.

As stated previously, the findings from the first Harris poll indi- cated that two-thirds of persons with disabilities in this country who

are of working age are not working. Even more impc:tant is the fact

that two-thirds of those individuals not working want to work. Although no action has been taken on this recommendation, the Council continues to believe that area model centers on employment could

assist in reducing the number of unemployed persons with disabilities.

Job Training

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

II Accomplishments

The Job Training Partnership Act (JTPA) authorizedjob preparation

and job training for people who are economically disadvantaged and for people who face serious barriers to employment. The JTPA also sym- bolizes cooperation between the public and private sectors to achieve

the shared goal of providing employment opportunities for disabled

persons. The 1986 Amendments to the JTPA were primarily technical

in nature because of the many substantial changes to the Acs, in 1982, and the Council's recommendation was not incorporated.

Some changes, however, did relate to disabled persons. A new

section entitled "Projects for Special Populations," Section 456, was

added. This section mandates the Secretary of Labor to expend a portion of the discretionary funds for research, demonstration, and pilot projects to assist groups of individuals who are, not otherwise targeted with Federal, State, or service delivery area set-asides. Special consid- eration is to be given to displaced workers and persons with disabilities. In addition, several sections of the Act emphasize the provision of

52
services to disabled i7eterans.

The Council believes that these provisions will improve and increase the services provided to persons with disabilities under the Job

Training Partnership Act. However, the Cnuncil reaffirms its belief that

for persons with disabilities to be adequately served by the JTPA, the

income eligibility criteria must be eliminated. The Council will continue

to encourage Congress to amend this legislation to reflect that position.

72

53
Disincentives to Work Under

Social Security Laws

An overwhelming consensus exists as to the importance of work in our

society; that consensus applies to disabled and non-disabled persons alike. The previous section on employment dealt in general with the

world of work, including the transition from school to work, supported

work, private sector initiatives, and job development, placement and

training. Toward Independence also included a section that took a

closer look at Social Security legislation and its impact on securing a

job. This section details progress toward the elimination of disincentives in the Social Security system.

In Toward Independence, the Council explored the extent to which

income and medical benefit programs authorized under the Social

Security Act encouraged persons with disabilities to become self-sufficient and gainfully employed. Economic benefits provided by those

programs, e.g., Social Security. Supplemental Income (SSI) and Social

Security Disability Insurance (SSDI), are intended to partially compen- sate for the earning loss which typically accompanies disability.

In addition to income supplements, persons with disabilities and/

or their families may be eligible for assistance with food, health care

(Medicaid and Medicare), housing, education, training, and employment. The tenet that underlies this form of Government assistance is

that alleviating financial stress through the provision of disability benefits will allow persons with disabilities to focus on recovery, rehabilitation and the eventual return to work.

However, some of the Federal programs under the Social Security

Act not only fail to promote employment and independence for citizens

with disabilities, but actually penalize and discourage people with

disabilities if they seek employment. Even though these programs

provide many people with severe disabilities the basic life necessities,

the experiences of consumers and service providers demonstrate that

some programs actually encourage dependence and discourage gainful

employment.

In order to eliminate or reduce the disincentives to work under the

Social Security Act, the Council recommended several legislative

changes. The first change relates to the existing process for determining eligibility for Social Security benefits. The Council believes that the

eligibility determination process should be revised to include a functional assessment of the individual's disabling condition. Other

changes include developing work incentives for recipients of Supple55
mental Security Income and conducting a study on cost-effective methods of providing health insurance to persons with disabilities.

Legislation passed in the 99th Congress contains several of the

Council's recommendations for the removal of barriers that discourage

persons with disabilities from seeking gainful employment under the

Social Security Act. The Council believes that this legislation will have

a positive impact on the number of persons receiving SSI and returning

to work. The Council continues to believe that Congress should revise

the eligibility criteria for SSI and SSDI.

Recommendations from Toward Independence

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.

Accomplishments

By definition, eligibility for SSI disability benefits or SSDI benefits is

based on the assumption that disabled beneficiaries are unable to

work. In principle, a person who is able to work should not be entitled

to disability benefits. However, disabilities obviously cannot be categorized simply as those that prevent one from working and those that do

not.

Currently, individuals with certain medical diagnoses are automatically considered eligible for SSI and SSDI disability income benefits unless they have a substantial work history after the onset of disability. Because the ability to work is dependent upon a large number

of factors and varies tremendously from one individual to another, the

eligibility process should be judged by a thorough functional vocational

assessment.

Although agreement exists that the eligibility process needs to be

improved, Congress has not yet acted on the recommendation made by

the Council. Because of the Council's commitment to this issue, it will

continue to work with the Social Security Administration and Congress

to encourage the revision of the eligibility criteria for SSI and SSDI. The

Council believes that this revision will change the focus of disability

determinations from a purely medical standard to one that recognizes

the full Menge of factors affecting the ability to work.

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 insur56 74

'es
ance in circumstances where the loss of such benefits would

substan# Illy negate the income they might earn.

Accomplishments

The heE,Ith insurance problems of disabled persons are widespread.

Some disabled workers are forced into int me support programs primarily because they cannot obtain private medical insurance coverage.

Persons with disabilities who are self-employed often have great difficulty because they rarely have access to group Insurance programs.

Furthermore, many small businesses that offer the low paying jobs

held by many people with disabilities have no medical coverage at all.

Congress attempted to alleviate problems in this area by the passage of the Employment Opportunities For Disabled Americans Act

(Public Law 99-643), which makes the temporary (demonstration)

provisions of Section 1619 (a) and (b) permanent. Passing this legislation implemented the aforementioned Council reconunendation.

Under this important program, eligibilty for Supplemental Security

Income cash assistance and Medicaid is extended for persons with

disabilities who go to work and have earnings above the Substantial

Gainful Activity (SGA) indicator, currently $300 per month. Previous

barriers which consisted of the termination of the SSI cash assistance

after the trial work period and the loss of eligibility for Medicaid have

been eliminated in this new legislation.

Re-entitlement problems for persons who have fluctuating earnings

and other changes have also been addressed. Re-entry is improved and

waiting time and reexamination requirements are eliminated. The Act

also provides for persons who are reinstitutionalized for treatment,

thus bridging another gap in the SSI program for persons with severe

disabilities. As a direct result of this legislation, more persons with

disabilities, especially those with more severe disabilities, will have the

opportunity to become employed, some for the first time.

In addition to the Employment Opportunities for Disabled Americans Act, Congress established an Advisory Council on Disability

within the Social Security Administration to study and make recommendations on the medical and vocational aspects of the Social Security disability programs [Consolidated Omnibus Budget Reconciliation

Act of 1985 ( Public Law 99-272, Section 12102), enacted April 7,

1986]. In addition to s1.41dying the areas mandated by Congress, the

Advisory Council will address work incentives and disincentives in

disability programs. A report of the findings of the Advisory Council is

scheduled for December 31, 1987. The National Council on the Handicapped looks forward to the report's recommendations regarding the

removal of disincentives to employment for persons with disabilities.

75 57
3. Congress should direct. the Health Care Financing Administration to stu4 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 the enactment of this provision..

Accomplishments

As was stated previously, the problems that disabled persons have with

health insurance are monumental. Access to health insurance is certainly one key toward independent functioning. The Council believes

that further investigation into this area is essential.

A study of the type recommended by the Council on health insurance was incorporated by Congress in the 1986 Rehabilitation Act

Amendments (Public Law 99-506, Section 303). Congress requested

the Director of the National Institute on Disability and Rehabilitation

Research to conduct a study on health insurance practices and policies

affecting persons with disabilities. A report on this study is to be presented to the appropriate congressional committees by February 1,

1990.

58

76
Prevention of Disabilities

A Federal initiative to prevent primary and secondary disabilities could

substantially reduce the costs of disability and health care foi Americans, reduce-Federal spending for disability in the near future, and

decrease the incidence of disability for future generations. Research

indicates that preventive measures would reduce the number of new

additions to the disabled population. For example:

One dollar spent on the Childhood Immunization Program saves

$10 in later medical costs (Monitoring the Health of America's

Children, 1984).

Seventy percent seat belt use would save an estimated 9,000

lives and prevent 34,000 severe injuries or disabilities per year

"iational Highway Traffic Safety Administration, 1984).

Because it is clear that our Nation has the knowledge, technology,

and resources to mount an effective and successful national program

for the prevention of primary and secondary disabilities, the Council

has devoted concerted effort in this area, and considerable progress

has been achieved in the past two years.

The Council's recommendations regarding prevention have three

components: 1) a national plan on the prevention of disabilities; 2) a

small community-based grants program; and 3) further research on

incidence and prevalence of primary and secondary disabilities. The

first component consists of the Federal Government's development of a

national plan for the prevention of disabilities. Such a plan would

focus on the major causes of primary and secondary disabilities and

brs--Yr they can be prevented. Recognizing the fiscal constraints being

placed on the Federal Go fernment today, the Council believes that the

implementation of this recommendation must not create any new Government agency or department, but rather be built into an already

existing Federal agency.

The Office of Disease Prevention and Health Promotion has issued

a report, Promotifig Health/Preventing Disease, which outlines national objectives to be reached by 1990. The Council is impressed with

the report, but is concerned that the objectives outlined focus on the

prevention of mortality and not disability. If this Office were to receive

additional monies and staff, it could, with Council involvement and

oversight, develop a plan focusing on the prevention of disabilities. The

development of such a plan would help prevent disabilities and would

also gather important, sorely needed statistical information.

77 59
The second component of the Council's prevention plan is a small

community-based grants program, which should be administered by

the Centers for Disease Control. Such a program would allow local

communities to apply for small grants to eliminate or ameliorate one or

several disabling conditions. For example, a small community in New

York State recently developed a plan to reduce the number of persons killed or injured in traffic accidents by educating a significant number

of high school youth, as well as others in the community. Data indicate

that this program has significantly reduced the number of traffic fatalities and injuries. By allowing local communities to set their own priorities, this program is likely to receive broader community involvement

and support.

The third component refit ,;ts an overall need within the disability

community for valid and relia.:Ae statistical data. Accordingly, the

Cnuncil has recommended that such data be gathered by the Oi :ice of Technology Assessment.

Recommendations from Toward Independence

1. Congress should enact a law related to prevention entitled "The

Prevention of Disabilities Act."

Accomplishments

When Toward Independence was published, the Council believed that a

separate piece of legislation was needed on the prevention of disabilities. Since that time, however, the Council has learned that existing

legislation could accomplish the same objectives, i.e., the development

of a national plan on the prevention of disabilities and a community- based grants program to demonstrate effective prevention strategies.

The Public Health Service Act contains several sections which authorize the'type of prevention activities which th^ Council believes must be

filnderl

First, Title XVII, Health Information and Health Promotion, authorizes the activities of the Office of Disease Prevention and Health Promotion. Senate Report 99-408, which accompanies the Labor, Health and

Human Services, and Education Appropriations bill for Fiscal Year

1987 (Public Law 99-591), contains language which directs the Office

of Disease Prevention and Health Promotion to begin to consider the

development of a National Plan for the Prevention of Disabilities. Recently, the Office of Disease Prevention and Health Promotion has

convened a series meetings of several Federal agencies involved in the

prevention of disabilities. Although these meetings have been productive, the Council believes that additional staff and funding for the Office of Disease Prevention and Health Promotion are necessary for the

60 78
goals of the Council's prevention initiative to reach fruition. Furthermore, the Council sees its role as maintaining oversight responsibility

for the development of such a national plan in order to assure that the

plan addresses major issues confronting the disability community.

Title III of the Public Health Act, General Powers and Duties of the

Public Health Service, contains a number of small grants programs

which may lend themselves to the implementation of the Council's

recommendation for community-based grants to prevent disabilities.

Specifically, Section 317, Project Grants for Preventive Health Services,

could be directed toward the prevention of disabilities.

In addition, Title XVII of the Act, entitled Health Information and

Health Promotion, also contains a vehicle for a small community-based

grants program, Section 1703, entitled Community Programs. This

section authorizes many activities which could promote the prevention

of disabilities within local communities. The Centers for Disease Control administers both of these community-based programs.

2. Congress should provide appropriate levels of funding for spe-

^Jai program priorities related to disability prevention.

Accomplishments

The Council has officially adopted two recommendations for appropriate funding levels for disability prevention activities. First, adequate

funds should be appropriated to the Department of Health and Human

Services to allow the Office of Disease Prevention and Health Promotion

to develop a National Plan on the Prevention of Disabilities. Second, the

Centers for Disease Control should be appropriated sufficient funds

over the next five years to fund community-based programs which

would promote the prevention of both primary 'rid secondary disabilities.

The Council firmly believes that the implementation of these recommendations could make a tremendous impact, not only by preventing needless disabilities from occurring, but also by assuring that

persons with existing disabilities are able to live more independent and

productive lives. Over the past two years, the Council has worked

conscientiously to secure appropriations related to prevention.

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 finch es two years after the issuance of the National Plan on

the Prevtition of Disabilities.

79. 61
Accomplishments

Before such a study of the status of primary and secondary prevention

of disabilities by the Office of Technology Assessment can be of value, it

is imperative that the Council's first two recommendations on prevention be fully operational. The Council continues to urge the Federal

Government to initiate a national program for prevention by coordinating Federal prevention-related programs, and believes that when these

programs become functional, an OTA study regarding the prevention of

disabilities will be of great assistance.

62 80
AIL .AMMIIII101111111OVI

Transportation

In Toward Independence the Council conclilded that accessible transportation is a critical component of a national policy that promotes the

self-reliance and self-sufficiency of people with disabilities: "People who

cannot get to work or to the voting place cannot exercise their rights

and obligations as citizens" (p. 33). According to Government data

(DoT, 1978), the number of transportation-handicapped people is 7.4

million in urban areas; of that group 1.4 million are unable to use

transit at all. Transportation is not a problem in a vacuum the magnitude of the problem is increased exponentially by complex interactions

between transportation and employment, housing, independent living, education, and leisure activities.

The 1986 Harris poll, "Bringing Disabled Americans into the Mainstream," underscores tht, fact that transportation is a major problem

for persons with disabilities. A clear majority of disabled persons state

that their disability prevents them from getting around, socializing, or

going to cultural events as much as they would like. Forty-nine percent

of the respondents believe that their mobility is limited because they

"are not able to use public transportation or because [they] can't get

special transportation or someone to give [them) a ride when [they] need one" (p. 65).

Transportation barriers not only limit social and community life;

they also severely restrict employment options, and may explain a portion of the 66 percent of disabled persons who are without jobs.

According to the Harris survey, approximately three out often people

say that a lack of accessible or affordable transportation is an important reason why they are not working.

In the Council's 1986 report, recommendations were provided in

the following areas:.urban mass transit, air transportation, intercity

and interstate buses, private transportation, and research. Without a

doubt, the area in which the greatest progress has been achieved is

that of air transportation, with the passage of the Air Carrier Access

Act of 1986.

III Recommendations from Toward Independence

0 Urban Mass Transit

1. Congress should amend Section. 16 of the Urban Mass Transit

Act to require full accessibility to mass transportation to be

achieved over a realk...:1c perioe. of time; such amendments

should:

81 63
a. Prohibit diserimk is! the basis of disability by recipients of Federal air this Act.

b. Require ret 1piern.r ipaordde a lvirel c: service to disabled

and elderly persons (chat !As equivalent with that available to nondisable&pexsaiw,in toms of: 1) service range, 2) transfer

frequency, 3) .fare, 4) traVel purpose, 5) trip decision/travel

time, ) oapacityi, 41nd7) av lability.

c. Require that all Iii w facilities and vehicles constructed or

purchased with firads reuder this Act be accessible.

d. Require recipients of funds under this Act to develop specific tumsitiont plans for achieving, within a reasonable period of time, full access and comparable service levels. These

plans should be developed with the substantial and meaningful involvement of disabled and elderly consumers.

e. Create a private right of action for persons who believe they

have been discriminated against by recipients of funds under

this Act.

Accomplishments

In today's highly mobile society, transportation barriers continue to

exclude many disabled persons from most forms of public transportation. Such discrimination prevents many people from realizing their

full potential for independence and productivity. Although the Urban

Mass Transit Act of 1964, as amended, espouses a national policy

establishing a right to equal use of public transportation for disabled

and elderly persons, the legislation lacks the underlying foundation

necessary to render it enforceable. It contains no clear mandate.

Section 16 of the law requires that special efforts shall be made in

the planning and design of mass transportation facilities and services

so that the availability to elderly and handicapped persons of mass

transportation which they can effectively utilize will be assured...." This

language weakens the policy of equal use by not setting a physical

standard for compliance. Judicial interpretations have found that this

section creates no requirement for a fully accessible system. The legislative history of the Act, on the other hand, tends to support the ides

that the intent of Section 16 is to create full accessibility.

The Council proposed amendments to Section 16 that would alleviate its weaknesses in terms of disabled persons and attempt to fulfill

its philosophical promise of a fully accessible system of transportation.

Unfortunately no action has been taken on the proposed remedies.

Instead; Congress has taken the role of policeman by proposing legisIP.-

tion to reverse regulatory setbacks imposed by the Department of

Transportation.

80

64
The regulatory setbacks Congress is attempting to reverse relate to

the Department of Transportation's promulgation of its final rule on

May 23, 1986, for urban mass transportation pursuant to Section 504

of the Rehabilitation Act of 1973, and Section 317(c) of the Surface

Transportation Assistance Act of 1982. In a letter to the former Secretary of Transportation Elizabeth H. Dole, the Consortium for Citizens

with Disabilities remarked: "...Millis rule fails to implement the principles of Section 504 and jeopardizes the availability of desperately

needed transportation for people with disabilities."

The two most glaring problems of that final rule are: 1) a regulatorily impooeci limit of 3 percent on the amount of funds required by a

recipient of Federal financial assistance in order to fulfill its obligations

to providing services to persons with dish. ilities; and 2) the unprecedented exclusion of one category of disabled persons, i.e. mentally

disabled persons, from coverage under the definition of disability under

the regulations (unprecedented in terms of Section 504 regulations).

The regulations cover only persons who are physically unable to use

the services. In his January 29, 1987, statement for the Record, Senator Cranston concluded:

RR has now been nearly 17 years since Congress proclaimed in section

16(a) 16(a) of the Urban Mass Transportation Act of 1964 that it is `natior

policy that elderly and handicapped person have the same right as\ others

persons to utilize mass transportation facilities and services' (lit is still

too often the case that disabled persons lack the access to transportation

services that they need.... It is time we gave greater meaning to the Congress' 1970 declaration of handicapped rights, and we can do so n this

(p. S 1412)

Identical bills are now pending in both the Senate and the House (S.

1077, H.R. 2887). These proposals, if enacted, will reverse the regulations with regard to the exclusion of mentally disabled individuals and

the 3 percent cap. Also included is a provision which was one of the

Council's five recommendations made to amend Section 16, the creation of a private right of action for persons who believe they have been

aggrieved under the Act.

If Congress passes the proposed legislation, the two regulatory

setbacks will be negated and a private right of action will be established for the first time. However, the Council strongly reaffirms its

commitment to the other four recommended amendments, especially

the requirement that all new facilities and vehicles constructed or

purchased be accessible.

A related issue to amending UMTA is monitoring the enforcement

of the UMTA Section 504 regulations that require tne submission of

transition plans describing how local transit authorities intend to

achieve compliance. The Paralyzed Veterans of America, the Council,

83 65
and the National Easter Ceal Societyi_re currently analyzing transition

plans that have been submitted to assess the state, and level of compliance as reported.

2. Congress should amend the Architectural Barriers Act of 1968

to establish the Department of Transportation as a standardsetting agency for the- development of access standards for

buildings, facilities, and public conveyances, including rolling

stock and aircraft, which are designed, altered, constructed, or

purchased with Federal ftmds to insure that they are readily

accessible and usable by disabled and elderly persons.

The Architectural Barriers Act of 1968 establishes four Federal agencies as standard setting the General Services Administration, the

Department of Defense, the Department of Housing and Urban Development, and the U.S. Pcstal Service. Although the Department of

Transportation sets transportation standards governing such matters

as configurations of vehicles, communication access, and appropriate

signage end safety, DoT is not allowed to establish standards for accessible transportation. The Ccuncil continues to believe that this situation should be remelied.

Air Transportation

3. Congress should amend the Aviation Act to:

a. Prohibit discrimination on the basis of disability by all airlinez using federally assisted airports.

b. State that all airlines using federally assisted airports are

stNect to the provisions of Section 504 of the Rehabilitation Act of 1973 and regulations promulgated thereunder.

M Accomplishments

At the time of the publication of Toward Independel ice, only a few small

air carriers that were federally subsidized were required to be accessible. However, since that time, Congress has responded to this inequity by enacting legislation to prohibit discrimination in air travel. The

Air Carrier Access Act of 1986, Public Law 99-435, echoed the nondiscrimination language of Section 504 of the Rehabilitation Act by prohibiting air carriers from discriminating against qualified handicapped

individuals in the provision of air transportation.

This law, in effect, reverFed the Supreme Court decision in the case,

of the Department of Transpre '.ation v. Paralyzed Veterans of America.

Specifically, the Act amends .:section 404 of the Federal Aviation Act to

prohibit discrimination on the basis of handicap by all air carriers.

66 84
Symbolically, the law has been a clear message from Congress that

discrimination vgainst persons with disabilNes will not be cu7 idoned.

In a. statement n. ade to the House of Representatives, Conia.essman Norman Mineta, chairman of the Aviation Subcommittee, remarked:

The bill now before us...will make it clear that airlines may not discriminate

against handicapped persons....I strongly believe that handicapped passengers are entitled to take full advantage of the mobility afforded by air transportation and that handicapped passengers are entitled to be treated with

dignity when they travel. (p. H 7193)

The law also directed the Department of Transportation to promulgate regulations to implement its provisions by January 31, 1987.

Recognizing the potential adversarial positions which the regulations

might evoke, and in an attempt to get those parties toge,' :er to negotiate compromises, the Department of Transportation utilized a process

referred to as "regulatory'negotiation." 'Mfg process, which Lad been

employed by the Department on three previous occasions, was originally developed by the Administrative Conference (47 FR 30706).

On June 10, 1987, a team led by two facilitators from the Federal

Mediation and Conciliation Service convened to establish parameters

for the negotiation process. The team was composed of 15 individuals

representing the disability community, the air travel industry, the

Federal GovernMent and observers.

Disability interests were represented by the American Council of

the Blind, Paralyzed Veterans of America, National Federation of the

31ind, National Association of Protection and Advocacy Systems, National Association of the Deaf/National Center for Law and the Deaf,

National Council for Independent Living and the Society for the Advancement of Travel for the Handicapped. The Federal Government was

represented by the Department of Transportation and the Architecturaand Transportation Barriers Compliance Board. The National Cuuncil

on the Handicapped, although not asked to be part of the official team,

was encouraged to participate and voice its views on issues of concern.

For purposes of discussion, potential problem areas 'were divided

into seven groups: 1) on-board accessibility, equipment, stowage of

aids, layovers, and enplaning and thplaning; 2) information briefing

and personnel training; 3) seating, dog guides, emergency evacuations,

and no segregation; 4) refusal of service, contagious diseases, advance

notice, mandatory special assistance, and limitations on the number of

handicapped persons on one flight; 5) reimbursement and special

charges; ":,) contractors and security; and 7) unequal treatment of

people with disabilities not requiring accommodations compared with

treatment of non-handicapped persons.

85 67
Tne team decided on an ambitious schedule which included ap- proximately twenty-five meeting dates from June through early Novem- ber. It was agreed that small work groups would also be formed for indepth exploration of specific topics. In addition, the committee scheduled two days of open public hearings for September so that any indi- viduals or groups that felt their needs were not being heard would have an opportunity to testify and submit materials for the record.

At this juncture, the committee has completed the majority ofits

meetings and will issue its final consensus document on November 6,

1987. Sub3equently, the Department of Transportation will issue pro- posed regulations in the Federal Register.

Intercity and Interstate Buses

4. Congress should extend coverage of handicap nondiscrimination requirements to interstate commerce, thus prohibiting

such discrimination by interstate bus companies.

Accomplishments

Bus transportation is often the sole form of public transportation connecting people in rural areas with major cities and towns. Because a

significant mn-r.bcr of disabled people reside in rural areas and rely on

bus transportation, the Council recommended prohibiting discriminatici,. by interstate bus companies.

The Council is aware of no activity with regard to extendingnondiscrimination coverage to bus companies. However, there do appear to

be increasingly more examples of bus companies retrofitting and pur- chasing vehicles which are accessible.

Private Transportation

5. Congress should establich a low-interest loan program based on

income to assist disabled persons and families with disabled

children or elderly persons to purchase vehicles or to make

necessary access modifications.

Accomplishments

Private transportation provides th_ only means by which many dis- abled persons and elderly persons can participate fully in community

life, including employment, - creation, education, etc Since the cost of

purchasing and modifying vehicles is prohibitive for many disabled

persons and their families, such a low-interest loan program is needed.

To date, no such program has been developed.
Much effort has gone into the development cf legislation that would

create a national unifona system for handicapped parking so that

persons with disabilities who require special parking arrangements can

travel freely between States. To date, th? Senate has approved such a

systeni in S. 853, legislation authorizing the National Highway Traffic

Safety Administration. The House legislation, H.R. 1442, is still pending.

Research

6. Congress should direct the Department of Transportation to

commission a study, based upon its existing authorities and

targeting currently available funds, to assess the impact of

increased access to transportation on employment, education,

and quality of life for disabled and elderly persons.

-MI- Acconiplisluiients

Very few reliable studies have been conducted on the impact of accessible transportation. Most existing studies have methodological weaknesses. Therefore, the Council believes that Congress should direct the

Department of Transportation to commission such a study.

The study proposed by the Council for the Department of Transportation has not been requested by Congress. However, Congress has

requested that the Architectural and "aansportation Barriers Compliance Board present a report on its activities, including transportation

barriers, by February 1988. It is anticipated that since the ATBCB

conducts research, a segment of that report will be devoted to the

status of available data and research needs in the area of transportation barriers.

87

69
Heusing

In Toward Independence, the Council described housing as "a major

prerequisite to social integration and living independently for persons

with disabilities," and noted:

The lack of appropriate housing opportunities for individuals with

disabili ties frequently results in the unnecessary and expensive

institutionalization of such persons. Available data suggest that the

costs of providing appropriate housing options for people with disabilities are well worth the investment because of the significant

savings that may be engendered by enabling disabled people to live

in the community, get jobs, and pay taxes. Various reports of Federal agencies, disabled person:., and the few formal studies of the

subject have documented aserious shortage of housing options for

people with disabilities. (p. 37)

The legislative recommendations of the Council in regard to housing presented direct and indirect means for u creasing the housing

opportunities available to persons with disabilities. "f implemented,

these would greatly enhance the quality of life of Americans with disabilities, with a secondary effect of reducing dependency-related costs.

Some significant legislative proposals and administrative actions have

furthered the proposals made by the Council in the area of housing. At

the same time, many of the Council's key housing recommendations

have yet to receive the congressional attention and implementation

they merit.

Recommendations from Toward Independence

1. Congress should prohibit housing discrimination agair..st persons with disabilities on as broad a ba3is vs race, color, re:kJ:lion,

sex, and national origin discrimination are prohibited under

Title VW of the Civil Rights Act of 1968.

II Accomplishments

Responding to the anomalous situation in which one of the Nation's

largest minorities persons with disabilities is omitted from the coverage of Federal Fair Housing laws, the Council proposed the expansi

of housing nondiscrimination requirements to protect individuals with

disabilities. Several bills currently before the Congress would provide

to persons with disabilities protection from housing discrimination

comparable to that available to other minorities. The proposed Fair

Housing Amendments Act of 1987 (S.558 and H.R.1158) would amend

Title VIII of the Civil Rights Act of 1968 to add "handicap" to the list cf

71

88
prohibited types of discrimination. Currently, Title VIII prohibits discrimination in housing on the basis of race, color, religion, sex, and

national origin. As-an alternative to amending Title VIII, the Council's

comprehensive equal opportunity proposal "The Americans with DisabiRties Act" would create a separate prohibition of discrimination on

the basis of handicap in housing. The housing subject to the comprehensive nondiscrimination requirement under this proposal would bP

identical to the housing covered by Title VIII.

2. Congress should require that all herusiizg units constructed or

substantially altered with Federal financial assistance, Federal

loans, federally subsidized or insured loans, or by agencies of

the Federal Governmees., should be.required-to-meet-accessibility standards.

Accomplishments

Based upon data indicating that it costs relatively little to incorporate

accessibility features into the construction of new housing, and that

accessible housing will be increasingly needed as the Nation's population ages, the Council advocated the broad application of housing

accessibility requirements. Such requirements would call for universally accessible housing units that can be easily adapted to meet the

needs of individuals with particular disabilities.

Some progress has been made in expanding the application of

Federal housing accessibility requirements. In addition to the Uniform

Federal Accessibility Standards (UFAS) that had previously created

accessibility and adaptability requirements for housing constructed by

Federal ages _es, similar requirenvInts are now proposed for recipients

of Federal housing grants. Proposed regulations of the Department of

Housing and Urban Development unner Section 504 of the Rehabilitation Act of 1973 (to be discussed in cc,:anection with recommendation

number 6) require that federally assisted housing projects shall contain no fewer than five percent of units that are accessible to persons

witn mobility impairments and no fewer than two percent that are

accessible for persons with hearing or vision impairments.

Concepts of universal accessibility features nave also been incorporated in the proposed Fair Housing Amendments Act and in the

Council's proposed comprehensive equal opportv lity law. Based upon

the Council's concern that fair housing for persons with disabilities

include, at a minimum, an accessibilit- requirement for new housing

construction, the Senate version of the Fair Housing bill (5.558) was

modified in the Judiciary Committee in June 1987 by a Kennedy/

Specter substitute bill.. In addition to other types of discrimination

prohibited under the proposed statute, the language of the substitute

72 8
bill as adopted by the Judiciary Committee makes it an unlawful act of

discrimination to design and construct multifamily dwellings 30

months after the date of enactment of the Act that fail to meet the

following standards:

(i) the public use and common use portions of such dwellings are

readily accessible to and usable by handicapped persons;

(ii) all the doors into and within all premises within such dwellings

are sufficiently-wide to allow passage by persons in wheelchairs; and

(iii) all premises within such dwellings contain basic universal features of adaptive design.

These standards apply to all the floors of buildings having elevators

and-to-the-ground-floor of buildings without elevators. The same standards are included in the proposed "Americans with Disabilities Act,"

the Council's comprehensive equal opportunity proposill.

3. Congress should direct the Department of Housing and Urban

Development that programs to provide rent subsidies for per- sons with disabilities through both Section 8 certificates and

the housing voucher program should be made permanent and

given a high priority.

ill Accomplishments

The Council considers both the Section 8 certificates program and the housing voucher program to be effective means for providing housing

opportunities for persons with disabilities who are unable to afford

appropriate housing without assistance. While Congress has not yet

expressly made the voucher program a permanent Federal program, it

has continued to provide funding for expansion of the voucher program

as a demonstration project within the Section 3 program.

4. Congress should direct the Department of Housing and Urban

Development to reorganize the Section 202 program to provide

a Aiage of housing options for persons with disabilities, and to

include a program of demonstration grants to agencies such as

Independent Living Centers to develop model housing options,

including transitional living programs, group residences, anl other alternatives.

Accomplishments

The Section 202 program provides direct, long-term Federal loans to

eligible private nonprofit organizations to finance new construction or

73
substantial rehabilitation of rental or cooperative housing for elderly

persons or peop1.3 with disabilities. At the time Toward Independence

was issued, funding for the Section 202 housing construction program

was in a moratorium, and there was some question as to whether the

Section 202 program would be continued. The Council felt that, with

some modifications, the Section 202 program was a useful means for

addressing the shortage of housing construction appropriate for persons with disabilities. It recommended continuation of the program,

with changes in focus designed to increase social integration and ageappropriatenesslor tenants with disabilities. The Section 202 program

haS been continued. In Fiscal Year 1987, the Department of Housing

and Urban Developmenprovided some $556.7 million in loans under

Section 202 to finance 12,689 rental units for low-income elderly and

disabled households. Loans were awarded to 384 nonprofit groups in

forty-three States, the District of Columbia, Puerto Rico, and the Virgin

Islands. Approximately $122.6 million of these funds are earmarked to

finance 2,928 units for persons with disabilities.

5. Offkes responsible for disability issues should be established

HUD's Fair Housing and Equal Opportunity Division and

within the Office of Policy Development and Research.

Accomplishments

Consistent with the Council's recommendation, a Section 504 Unit has

been established within the Fair Housing and Equal Opportunity Division of the Department of Housing and Urban Development (HTJD). Its

mission statement is the following:

The Section 504 Unit is responsible for the implementation and

enforcement of Section 504 of the 1973 Rehabilitation Act, as

amended. The Section 504 Unit providls administrative oversight

and technical support in regard to Sections 501 and 502 of the

1973 Rehabilitation Act, the Architectural Barriers Act of 1968, and

other laws affecting disabled persons. The combined effect of these

activities will be to ensure that HUD's programs and activities are

carried out in a manner which neither discriminates against nor has

the effect of excluding participation by disabled persons.

Although administratively created and functioning, the Section 504

Unit has not yet been formally incorporated as a permanent part of the

HUD structure and organizational chart.

No action has been taken regarding the Council's other recommendation for creating an office responsible for disability issues within

HU.D's Office of Policy Development and Research.

74

91
6. Congress should direct HUD to issue appropriate regulations for

the implementation of Section 504 of the Rehabilitation Act of

1973.

M Accomplishments

As a result of a lawsuit, Wilson v. Pierce, (Civil No 82-288 TUC RMB

(Order of June 22, 1983)), the Department of Housing and Urban Development has been ordered to issue its Section 504 regulations on a

prompt basis, and the Court is monitoring its progress monthly. A

current version of the proposed regulations, incorporating many of the

changes recommended by the Council is, as this report goes to press,

the subject of negotiations between HUD and the Department of Justice.

7. Additional programs should be initiated to leverage existing

private sector funding and to provide incentives and financial

resources for the development of housing opportunities for p ,:ple with disabilities,

C Accomplishments

The Federal tax deduction available to businesses for the removal of

architectural barriers has been made a permanent part of the Tax Code

and has been increased from $25,000 to $35,000. Apao ,. from this and

the Section 202 program discussed previously, little has been made

available in the way of increased resources to provide for housing opportunities for persons vvith disabilities. The Department of Housing

and Urban Development has contracted with the United Cerebral Palsy

Associations, Inc. to develop reports in the area of housing for persons

wits disabilities. One of these reports, issued in August 1987, focused

on the feasibility and usefulness of establishing a National Center on

Housing for Persons with Disabilities. Another, issued in April 1987,

presented six case studies representing a range of approaches to the

provision of housing for persons with disabilities; its conclusion was as

follows:

While these cases represent organizations along a continuum of

public/private partnership in the developmcmt of housing for disabled persons, it is clear that the promise of the future is in private

financing, a heavier reliance on private providers, and an ongoing

search for incentives for investors and small community based living

situations. Al1 of the programs considered envision expanded development of housing in the future and there is no indication that the

need for housing for disabled persons is even close to being met.

Because of the shrinking public dollars and a future trend towards

private investment, the pressure is on to expand creative financing

schemes and turn any stone which may hide an investor f.-icentive.

75

92
These findings underscore the importance of the Council's proposals of

additional programs to leverage existing private sector funding and

provide additional resources for housing opportunities for persons with

disabilities.

In the fall of 1987, HUD awarded a two-year grant to the National

Association of Homebuilders National Research Center (NAHBNRC) in

collaboration with the Association for Retarded Citizens of the United

States (ARC) to review financing mechanisms and accessibility design

issues in housing development for people with disabilities, and to provide technical assistance in regard to such financing and design issues.

8. HUD and the private sector should be encouraged to develop

training grants, supplemental teaching positions, awards, and

other innovative programs for promoting architectural planning

that incorporates the concept of universal accessibility.

Accomplishments

The Council is not aware of any major Federal training grants focusing

specifically on accessibility in architectural design, although seucidi

schools of architecture in various parts of the country have made

courses on accessibility a mandatory part cf their curriculums.

One of the major undertakings of the HUD-funded grant project

(NAHBNRC/ARC) discussed previously is to provide technical assistance in regard to accessible design.

76 93
Community-Based Services for

Independent Living

In 1983, the Council in its National Policy for Pers ins with Disabilities

defined independent living as "control over one's life based on the

choice of acceptable options that minimize reliance on others in making decisions and in performing everyday activities." The independence

defined here implies an optimally responsible and productive exercise

of the power of choice. It implies that each disabled person, regardless

of his or her mental or physical ability, should be encouraged and

assisted to achieve maximum levels of quality of life, independence,

and productivity in the least restrictive environment and with due

respect for cultural or subcultural affiliation.

According to the Research and Training Center on Independent

Living (ILRU) in Houston, Texas: "Independent living centers are operated primarily by people with disabilities who have been successful in

establishing independent lives. Centers offer a wide variety of services,

including: information and referral; independent living skills training;

peer counseling; advocacy; and others." ILRU estimates that there are

approximately 150 independent living centers and over 320 independent living programs in this country. In 1984, according to the Rehabilitation Services Administration, 86 grants were awarded to 160 independent living projects throughout the country. In 1987, 136 grants

were awarded to 170 independent living projects. The increase in independent living centers and programs is indicative of their increasing

importance the lives of persons with disabilities.

Recommendations from Toward Independence

1. Congress should require the agency in each State designated to

administer Title VII, Part A of the "-i-abilitation Act to allocate

no less than 50% of available funds to purchase services from

independent living centers that meet the standards approved

by the National Council on the Handicapped. No more than 10%

of available fi ads should be used for administrative purposes.

The remaining funds should be used at the discretion of the

administering agency in any way that assists people with severe disabilities to achieve independence and productivity in

their communities.

Accomplishments

According to Senate Conference Report (99-388), which accompanied

the Rehabilitation Act Amendments of 1986, the Congress has been

94 77
impressed with the overall accomplishments of independent living

programs. Several additions were made to the Rehabilitation Act

Amendments of 1986 to strengthen the philosophical integrity of the

independent living program. The basic principles of consumer involvement and consumer control, which are fundamental to tl..e concept of

independent living, were stressed.

In Toward Independence, the Council recommended that funding

for Part A be continued as a means of ensuring that community-based

services are made available to persons with severe disabilities. The

Rehabilitation Act Amendments of 1986 retained this provision. The 1986 Amendments also mandated the establishment of State Independent Living Councils which would serve three purposes:

1) provide guidance for the development and expansion of independent living programs and concepts on a statewide basis;

2) provide guidance to State agencies and to local planning and

administrative entities assisted under the Rehabilitation Act; and

3) prepare and submit to a designated State agency a five-year Van

addres3ing the long-term goals and recommendations for the need

for independent living services and programs within the State.

The Council views the establishment of State Independent Living Councils as a positive step in strengthening the independent living movement and in enabling persons with disabilities tc, :Ive and work

more productively in their communities.

2. Congress should provide core funding under Title VII, Part B of

the Rehabilitation Act for independent living centers that meet

the standards approved by the National Council on the Handicapped. Such centers should be allowed to apply and compete

for this funding on an equal basis with State vocational rehabilitation agencies.

Ae-lmplishments

The Congess has reaffirmed the importance of the standards establishe, by the Council in 1985 for independent living centers. In Senate

Report 99-388, the Congress indicated that the appropriate Federal

role with respect to independent living centers is to ensure the provi- sion of a foundation of support for these independent living centers

that will enable them to attract additional public and private support at Federal, State and local levels. Continued funding for centers oper- ating according to prescribed standards and principles of good business assures that these centers will be able to attract the additional

78

95
support required to expand programs to meet the rr-.ds of all severely

disabled people in the communities which they serve.

The evaluation standards for independent living services developed

by the Council have been endorsed by the Rehabilitation Services Administration. RSA is currently organizing an advisory group to develop

measurable criteria based on the Council standards. These criteria are

expected to be published in the Federal Register in July 1988.

3. Congress should require the Health Care Finarcing Administration to study the institutional bias within it. 1..7ograms for persons with disttbilitie:i and to develop appropriate measures for

eliminating such biases. The criteria should be developed in

consultation with the National Council can the Handicapped and

be reported in hearings before Congress within one year from

the date of enactment of this requirement.

Accomplishments

An extraordinaty amount of the Medicaid funds administered by the

Health Care Financing Administi (HCFA) is spent on nursing

homes and other long-term institutions that primarily provide custodial maintenance for disabled individuals. The Council believes that

strictly maintenance -oriented institutional programming is indefensible

and unnecessary. Wherever possible, institution( ;,?could be transitional and foster independence. The majority of available funding

should be directed toward assisting all individuals with severe disabilities to achieve self-direction and independeace to the maximum extent

possible, in the most dignified and least restrictive environment.

The Council continues to cooperate with HCFA to develop criteria

to determine to what extent Medicaid and other programs administered

by the HCFA promote community-based services and discourage placements in institutions. Steady progress in this area is expected as independent living concepts gain acceptance.

4. Congress should amend the Internal Revenue Code to establish

a tax credit for taxpayers with disabilities who incur unreimbursed expenses directly related to independent living, employment, and efforts to secure employment, including personal

assistant servicls, special transportation, assistive devices, and

other support services.

L. Accomplishments

The number of tax deductiors allowable under the medical category

continues to grow. Recently enacted tax legislation, for example, per79

96
mits a disabled employee to deduct the full cost of attendant services

and other services necessary to enable the employee to work. Capital

expenditures to accommodate a personal residence now also constitute

medical expenses eligible for deductions. However, regulations governing many non-medical, disability-related services remain unclear and

impose unfair restrictions on disabled persons. The Council intends to

continue its efforts to clarify tax legislation and regulations and to

include services that enable individuals with disabilities to engage in

productive activity.

97
Educating Children

With Disabilities

Few would argue with the premise that education is a key to success in

our society. The same holds true. for children with disabilities education helps disabled children develop the skills they need to live as

independently as possible when they reach adulthood.

In Toward Independence, the Council placed education of children

with disabilities among its ten priorities. The Council has heard about

needs and issues related to the education of children with disabilities

from hundreds of parents, disabled persons, and service providers

from around the country. Moreover, this issue is close to the hearts of

many Council members either because they are parents of children

with disabilities or because they, as disabled persons, vividly remember their own educational difficulties.

Although special educational services have progressed greatly in

the twelve years since the paSsage of Public Law 94-142, the full promise of the mandate has not yet been fulfilled. The Council made four

recommendations relating to the education of disabled children.

The first two recommendations are related directly to the Education for All Handicapped Children Act (MIA). The Council believed that

the Act should'be amended to extend the mandate to birth. The Education of the Handicapped Act Amendments of 1986 extend the mandate.

The recently enacted legislation creates an Early Intervention Program

to serve disabled infants from birth through age two. In addition, the

legislation included significant improvements in services which are

provided for three- to five-year-old children with disabilities.

The second reconmAendation relates to one of the central principles

of the EHA the least restrictive environment (LRE). The Council identified LRE as an issue that requires standards for clarification. To help

in this process the Council developed a draft policy statement on least

restrictive environment.

The last two recommendations have national significance. One

suggests the development of a national technical assistance center to

help parents and State and local education agencies plan and develop

educational options for children with special needs. The other calls for

the establishment of a National Commission for the Study of Excellence in Special Education.

One final activity not mentioned in Toward Independence is the

Council's initiation of a third Louis Harris poll that will survey parents,

educators, and children with disabilities to more closely examine the

81
status of education for children with disabilities in this country. The

results of the poll will be of immense value to the Council, the Congress, and others in the development of the best educational policy to

meet the needs-of disabled children and youth.

Recommendations from Toward Independence

1. Congress should amend the Education for All Handicapped

Children Act to encourage States to make available a free- appropriate public education to every disabled child from birth through

age twenty-one.

Accomplishments

Young children with disabilities are particularly vulnerable. Research

indicates that early intervention services greatly enhance the developmental and educational potential of these youngsters. Furthermore,

the provision of early. intervention services which benefit children and

their parents result in significant tax savings in the long run because

of reduced special education expenditures in later years.

Public Law 99-457, the Education of the Handicapped Act Amendments of 1986, enacted into law on October 10, 1986, extends services

to children from birth to age three, significantly expands services to

preschoolers ages three to five, and contains a number of important

provisions regarding the education of.children with disabilities.

The new legislation, a result of the combined efforts of the Council

and many parents and advocacy groups, creates a program which will

provide enhanced services to infants and toddlers with disabilities and

their families. A State-wide system which will provide comprehensive

services to these young children and their parents is an essential ingredient of the new program. Through the development of an Inc.ividualized Family Service Plan, each child will rece.Ive a multi-disciplinary

assessment which will identify his or her unique needs and assure that

appropriate services are delivered. Additionally, States may choose to

serve those child: en who are "at risk" in developing a disability.

Another provision of the new law addresses concerns raised in

Toward Independence regarding the lack of coordination of funds for

services rendered to young disabled children. The major thrust of this

"payor of last resort" provision is that monies provided for this program

may not be used to pay for services which would have been provided

through another public or private source.

The Amendments also made significant improvements in services

which are provided to three- to five-year-old children. This new man82

99
date effectively extends the mandate of Public Law 94-142, the Education for All Handicapped Children Act, to serve all disabled children at

three years of age by 1991. The*Amendments repeal the existing Preschool Incentive Grant program but increase the financial incentives

for serving disabled preschoolers. By school year 1990-1991,, if appropriations are made at the authorized levels contained in the Amendments, States will be required to serve all disabled children aged three

to five. EHA funds for preschoolers, including incentive grants and

discretionary funds, will be withheld from States not in compliance

with the service mandate.

Finally, the new law adds several other provisions designed to

assure that children-and youth with disabilities receive appropriate

educational and related services.

2. Congress s. ould direct the Department of Education to promulgate and enforce standards for the application of the least restrictive environment requirement; such standards should

clarify that the primary determinant of which educational setting is least restrictive is the educational appropriateness of

the program.

Accomplishments

The least restrictive environment mandate is a major component of the

right to a free appropriate public education for children with disabilities. The principle has not, however, always been appropriately applied

by State and local education agencies. In some instances, least restrictive environment has not been vigorously applied and children with

disabilities continue to be unnecessarily segregated. Additional guidance and clarification- should be provided so that this principle can be

realized.

In order to address the multiple- issues-which are involved in educating youngsters with disabilities in the LRE, the Council has adopted

a draft policy statement with a broad-based, comprehensive approach.

Issues discussed in the draft document include the need for monitoring

and data collection on LRE; the parental role in LRE; technical assistance to State and local education agencies; and personnel development and funding issues. The Council believes that these and other

issues must be thoughtfully considered if the vision of educating children in the least restrictive environment is to be fully realized.

A Council task force will be convened within the next few months

to finalize the policy statement on LRE. After this has been completed

the full Council will consider this policy for adoptic and dissemination.

100 83
3. Congress should direct the Office of Special Education Pro- grams to fund a national technical assistance center to help

parents and State and local education agencies plan and de- velop educational options for children with special needs.

Accomplishmenti

The Council has long recognized the need for greater emphasis on the provision of services to parents of children with disabilities. Many gaps

exist in the provision of information and referral sources for parents.

The feasibility of a centralized information-based system with nation- wide access is being considered.

In its special report on the Education for All-Handicapped Children

Act, the Council provided testimony to Congress on the need for a national technical assistance center. Senator Paul Simon further explored this concept with Chairperson Parrino during the hearing. The Council will continue to advocate the establishment of a parental assistance system.

4. Congress should direct the Secretary of Education and the Chairperson of the National Council on the Handicapped to

establish a National Commission for the Study of Excellence in Special Education.

Accomplishments

The Council has been impressed with the variety of new and innovative

approaches adopted in special education programs. Called "best practices," they include team and shared teaching, itinerant teachers and

resource persons working with the regular educator, and physical,

speech and occupational therapists working with classroom teachers to

"transfer" their professional knowledge from isolated settings into the

regular education environment. These practi:es reinforce the Council's belief that a comprehensive approach to personnel development will

enhance the collaborative efforts among an professionals involved in

the education of children with disabilities.

While members of the Council are excited about new techniques

emerging-in the education of children with disabilities, it is nonetheless

disturbing that so much remains to be done. In 1982, the Commission

on. Excellence in Education issued a report titled A Nation at Risk,

which cited many problems faced by the American educational system. The report, however, did not attempt to address the special needs of students with disabilities and their families. Therefore, the Council

believes that this unmet need must be fulfilled. Moreover, twelve years

have passed since the enactment of Public Law 94-142, and the Coun- cil sees value in assessing the progress of the implementation of the

law to date. Therefore, the Council recommends the establishment of a

National Commission on the Study of Excellence in Special Education.

Such a commission would evaluate the progress and recommend future directions geared toward enhancing the education of children with

disabilities.

84
Personal Assistance: Attendant Services,

Readers, and Interpreters

Personal assistance is one key to independence for thousands of

Americans with disabilities. Without question, personal assistance by

readers, interpreters, and advocates is one of the single most important

unmet needs for disabled persons.

According to Toward independence, personal assistance, as rendered by attendants who assist with routine activities of daily living,

when provided in conjunction with other community-based services,

can be an effective and economical means for reducing the Nation's

reliance on institutions. Effective and efficient personal assistance

services can enable most persons with disabilities to live independently

in settings of their choice. The goal should be to establish personal

assistance services, self-directed when feasible, as one component of a

comprehensive array of community-based services that should he

available to people with disabilities. In order for an acceptable system

to be developed, many complex funding, policy, and legislative issues must be addressed.

While some progress has been made at the Federal, State, and

local levels toward providing personal assistance services, the stark

reality is that for most disabled Americans, these services are, at best

difficult to acquire. And for most these services are unavailable, leaving

countless disabled persons to live lives of dependency. This situation

often puts an untoward burden on families and friends, or means that

the disabled person must reside unnecessarily in an institution or

nursing home.

The World Institute on Disability (WID), an internationally known

organization comprised primarily of disabled consumers, has recently

released a study entitled, "Attending to America." That study further

underscores the critical need for attendant services in this country.

The Council has sought input regarding attendant services from

WID, the National Council on Independent Living, and many other

organizations and individuals. In addition, because the Council places

such a high priority on personal assistance, it has brought together

experts from the disability,community to form a task force on this

issue to develop recommendations for a comprehensive legislative

agenda. A legislative workplan is currently being developed which

recommends amendments to legislation, and includes proposals to fill

service gaps in developing coordination of personal assistance services.

The Council reaffirms its commitment to the development of a

national policy on personal assistance for all persons with disabilities

,L 102 85
and to the connection between such a policy and the goal of independence for persons with disabilities.

Recommendations from Toward Independence

1. Congress should establish a national policy that defines personal assistance and should require the development of national standards for the delivery of personal assistance services.

Accomplishments

As the Council examined the development of a national policy on personal assistance services, one fact was clear: this is a complex policy

matter, one that requires careful thought and deliberation. First, while

there are some programs currently funded through the Federal Government, eligibility requirements often limit these services based on

age or income. Second, even when these services are funded, they are

often on a time-limited basis. For &le, someone who has recently

been discharged from a hospital might only have attendant services

available during the recovery period, even though that individual might

need more extensive services Finally, these services are generally

rendered through a "medical model" which does not usually promote

optimum independence or choice for individuals with disabilities.

These and many other factors enter into the development of a comprehensive public policy on personal assistance services for persons with

disabilities.

Some of the options discussed by the Council include: amendments to Medicaid and/or Medicare to mandate personal assistance

services for persons with disabilities; amendments to Title Ii of the

Social Security Act (SSDI) to allow attendant services; and amendments to Medicare to also increase the availability of these services.

Additionally,_the Council has initiated tracking of major legislative

options. Although there is no broad Federal policy regarding personal

assistance services, scattered Federal attempts to provide these services can be found under Medicaid; Title MC, Social Service Block

Grants; the Older Americans Act, Title III; and State initiatives. Because of the wide range of government agencies involved, as well as the

wide range of age groups and disability populations needing personal

assistance services, the process of developing personal assistance

program legislation is exceptionally complicated. Overcoming these

obstacles necessitates a proposal that fills in the gaps regarding populations or services not included in other legislation.

In addition to establishing a Council task force for the development

of a legislative package for a national personal assistance program, the

86

103
Council has consulted with leaders in the field and many organizations

throughout the country, including the World Rehabilitation Fund, the

National Council on Independent Living, and.the World Institute on

Disability. A legislative workplan is currently being developed, and

future task force meetings are expected to provide results which will

reflect enhanced coordination of personal assistance services.

Although the number of qualified interpreters for people who are

deaf has expanded in recent years, the demand for competent interpreters far exceeds availability. Section 315 of the Rehabilitation Act of

1973, as amended, authorizes the Commissioner of the Rehabilitation

Services Administration to award grants to States for the establishment of interpreter service programs. This section includes a requirement that interpreters participating in such programs meet minimum

standards. Because Section 315 has not been funded by the Congress,

no interpreter standards have been established. However, the Arkansas

Research and Training Center on Deafness and Hearing Impairment-is

currently conducting a national survey from which specific recommendations can be developed regarding needed interpreter competencies.

The study, which has surveyed professional interpreter trainers, vocational rehabilitation counselors, deaf consumers, providers of interpreter services, and others in the field of deafness, is expected to be

completed by September 1988.

2. Congress should require the Social Security Administration

(SSA), in consultation with the National Council on the Handicapped; to implement a series of projects, using SSA demonstration authority and targeting currently available funds, to

develop and demonstrate a cost-effective process and mechanisms for the support of community-based personal assistance

services for persons with severe disabilities.

Accomplishments

As progress is achieved in the development of a workplan on personal

assistance policy, it is anticipated that cooperative negotia' ions between SSA and the Council will yield detailed steps for the effective

provision of personal assistance services. The Council believes that a

more centralized process of providing personal assistance services can

be developed with the assistance of SSA subsequent to the completion

of the task force workplan. The Council remains confident that the SSA

is sensitive 'to the need for increased community-based personal assistance programs and that future funding priorities will reflect this commitment.

ti 104

tr.1=wa.'

87
M111111111

Coordination

In addition_to the recommended legislative changes in each of the nine

substantive areas, the need for coordination of services, programs, and

funding is also critical. "Coordinated services" describes the ideal results of a.wide range of interactions among persons active in policy and

program development. Although these interactions take place every

day, their ,purpose, frequency, and effectiveness vary greatly from program to program, community to community, and State to State. Many

instances of gaps in services, as well as duplicative services, are evident across the country. Coordinated efforts could resolve some of

these problems.

The Council advocates frequent interaction at the national level of

all parties involved in policy decisions that affect services to people

with disabilities. To that end, the Council has maintained its,information base with consumer organizations around the country while

strengthening interaction on coordination with national, State and

local policy makers, disability organizations, Congress, and the Administration.

Several examples of coordinated efforts in disability policy stand

out, but activities in the area of prevention best exemplify the advantages of a coordinated approach. In conjunction with the Office of Disease Prevention and Health Promotion, a series of meetings of various

Federal agencies were convened which focused on the prevention of

disability.

Another example entails coordination with the Department of

Transportation in the development of regulations pursuant to the Air

Carrier Access Act of 1986. Known as "regulatory negotiation," this

process involves a team of individuals representing different areas of

concern, ranging from a particular disability, such as blindness or

mobility impairments, to a sector of the air transportation industry,

such as airport operators or flight attendants.

The Council also has supported coordination efforts by cosponsoring a conference with the Office of Special Education and Rehabilitative

Services and by submitting congressional testimony advocating coordination of services to very young children with disabilities.

Recommendation from Toward Independence

1. Congress should require State and local agencies that releive

Federal funds for services for people with disabilities to participate in the development of coordinated service delivery plans.

105 89
.111=11111k Accomplishments

During the past few years, the Council has actively engaged in efforts

that have fostered coordination at the Federal, State and local levels.

Examples of these efforts include the establishment of a Federal ad hoc

group on prevention, participation in the regulatory negotiation process

for the Air Carrier Access Act of 1986, cosponsorship of a conference

with the Office of Special Education and Rehabilitative Services, and

recommendations in testimony for the Education of the Handicapped

Act Amendments of 1986.

One of the most significant contributions at the Federal level is the

ad hoc group which the Council convened in conjunction with the

Office of Disease Prevention and Health Promotion. Comprised of fifteen Federal agencies,. the committee meets bimonthly to promote the,

coordination Jf services for the prevention of disabilities. Representatives on the committee include the Council, the Administration on

Developmental Disabilities, the Rehabilitation Services Administration,

the President's Committee on Mental Retardation, the Centers for

Disease Control, the Maternal and Child Health Program, and the

National Institute on Disability and Rehabilitation Research. The committee has two functions: one, to exchange information and coordinate

efforts among these agencies on the prevention of disability; and two,

to develop a national plan on the prevention of both primary and secondary disabilities. The national plan will be the first of its kind and

will greatly enhance coordination efforts around the country. (see also

"Prevention u Disabilities")

Another example of coordination at the Federal level is one in

which the Council has been an observer and supporter in the Department of Transportation's "regulatory negotiation" process to develop

regulations pursuant to the Air Carrier Access Act of 1986. This proc- ess involves a team of fifteen individuals, each representing a different

area of concern, ranging from a particular disability, such as blindness

or mobility impairments, to a sector of the air transportation industry,

such as the airport operators or flight attendants. The intent of the

process is to create a forum in which divergent views can be aired and

a consensus can emerge. In November 1987, after a series of twentyfive meetings, a report detailing areas of agreement and disagreement

will be submitted to the Department of Transportation so that a pro- posed rule can be published in the Federal Register for public comment. (see also "Transportation")

In March 1987, the Council cosponsored a conference with the

Office of Special Education and Rehabilitative Seivices and the

President's Committee on Employment of the Handicapped regarding

the transition of disabled youth from school to work settings. This

90 106
conference was unique in that it brought together disabled youth,

parents, employers, and rehabilitation professionals to discuss problems faced by disabled Americans leaving school and seeking their

rightful place in the work force. (see also "Employment" )

Finally, the Council's commitment to the coordination of services

also has been demonstrated in its written testimony on August 12,

1986, to the House Subcommittee on Select Education regarding the

Education of the Handicapped Act Amendments of 1986. in that testimony, the Council supported the creation of Early Intervention Councils to assure that services to very young children with disabilities are

adequately coordinated.

In testimony submitted to the Senate Subcommittee on the Handicapped in April 1987 regarding the Developmental Disabilities Act, the

Council reinforced the coordinated approach taken by the Development

Disabilities State Councils. Furthermore, the Council emphasized that

Federal programs must maintain a certain degree of flexibility so that

they can be coordinated with other programs to meet the unique needs

of State and local communities.

The Council is also exploring the work of the Advisory Council on

Intergovernmental Relations to identify data being gathered regarding

coordination efforts at the State and local levels.

107
Biographies of Members

of

the National Council on the Handicapped

Sandra Swift Parrino

Sandra Swift Parrino, of Briarcliff Manor. New York. was appointed Chairperson of

the National Counc.11 on the Handicapped in 1983 by President Reagan. She has been

actively involved in issues concerning disabled people for many years. Her 22-yearold son. Paul. has been severely disab! al for most of his life. She is best known as a

spokesperson for parents of disabled children and as a panelist, lecturer, lobbyist.

and organization official.

Mrs. Parrino serves on numerous boards and councils. She has been director of

the Office of the Disabled in Ossining and Briarcliff Manor. New York; she has served

on the board of Westchester County Homes for the Retarded; and she is a member of

the New York State Assembly Task Force on the Disabled, which reviews pending

legislation in the State of New York. Through her efforts, many local advances have

been made to improve accessibility for disabled people, such as setting up transportation services and installing voting machines for disab d persons, fund-raising to

provide interpreter services for deaf people, and supervision of the school district's

compliance with rederal regulations. Mrs. Parrino has been instrumental in the

inception of the Council's comprehensivp equal opportunity proposal which promotes

independence and equality for people with disabilities.

Mrs. Parrino is also a member of the board of Parent Chain, and has served as an

American Representative to the United Nations and UNICEF for the International

Year of Disabled Persons. She is currently the North American vice president of

Rehabilitation International. a worldwide service, information, and advisory organization. She has also b,-zn asked by the Department of Health and Human Services to

co-chair an ad-hoc committee an the prevention of disabilities.

John S. Erthein

John S. Erthein lives in tos Angeles, California. where he is president of John S.

Erthein and Associates, Inc., a public relations firm with offices in Los Angeles and

Washington, D.C. The firm's clients include the AMDAHL Corporation; CBS, Inc.;

Arts and Entertainment Network; Forum Home Video; Insight Magazine; Dart Drug;

and the Chicago Board of Trade. Mr. Erthein has produced and marketed home video

cassettes including "How To Benefit From Tar Reform" and Charleton Heston's

"Television's Vietnam."

Mr. P:rthein was the foundinglzesident of the American Paralysis Association, an

organization whose primary objective is to fund research to find a cure for spinal Coal

injnries. He is a graduate in marketing from Columbia University. served as an officer

in the Jnited States Coast Guard and was Security Officer and Public Information

Officer for his unit New York.

93

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1

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He was assistant for finance for Citizens for the Republic when Ronald Reagan

chaired that organization. Subsequently, he assisted in setting up the fundraising

organization for the 1980 Reagan Presidential campaign.

Theresa Lennon Gardner

Theresa Lennon Gardner of Washington, D.C., was nominated by President Reagan to

the National Council on the Handicapped after more that two decades of professional

service as an educator and volunteer working with disabled youngsters.

Mrs. Gardner began her efforts with disabled children in the early 1960s, when

she worked at the D.C. Society for Crippled Children. Atthat time, Mrs. Gardner was

successfully completing her degree work at the Washington Montesorri Institute. Mrs.

Gardner's commitment to quality education for our younger student population was

evidenced in 1966, when she founded the'Georgetown Montessori School in Washington. For twelve years, Mrs. Gardner administered the sixty-student Montessori preschool which educated children of diverse socio-economic backgrounds in the

Nation's Capital. She also founded and funded an inner-city Montessori facility near

the Capitol which later became a model for Washington's Head-Start program.

As a mother of two daughters, Mrs. Gardner has been active in a variety of

cultural and social enrichment programs for Washington area youngsters. As a

member of the Women's Heart Board of Washington, D.C., Mrs. Gardner chaired the

Children's Heart Party. She also has taught therapeutic riding to multi-disabled

youngsters from numerous Washington area residential facilities.

In addition to her civic responsibilities, Mrs. Gardner currently attends Trinity

College in Washington, where she is scheduled to receive a degree in education in the

spring of 1988. Mrs. Gardner is also a frequent visitor to educational.and disabledperson facilities throughout United States, Europe and Africa. In 1982, Mrs. Gardner

served as the official U.S. hostess to thousands of Kenyan school children who visited

the U.S. exhibit on telecommunications while her husband was serving as President

Reagan's ambassador to a United Nations' Conference in Nairobi.

Marian North Koonce

Marian North Koonce, of Santa Barbara, California, is the mother of six children. Two

are physically handicapped from birth and a third contracted multiple sclerosis as a

young adult. Along with the great amrunt of time and attention she gives to her

family, she has held many administrative and leadership positions in business, most

recently, as chairman of the board of a Santa Barbara independent bank.

She is involved in numerous local and national organizations. She was chairman

of the Santa Barbara County Reagan-Bush '84 Committee. She served as a delegate

to the Republican National Conventions of 1976, 1980, and 1984.

From 1980 to 1981, Mrs. Koonce was vice president of recording for the Blind

Auxiliary. She serves on the boards of the Santa Barbara Symphony Association, the

Las Positas Park, and the University of California, Santa Barbara. She is also chairman of the Channel Islands chapter of the National Multiple Sclerosis Society.

94
_7=1!=1.

Leslie Lenkowsky, Ph.D.

Dr. Leslie Lenkowsky is the president of the Institute for Educational Affairs, a

nonprofit organization in Washington, D.C., devoted to encouraging innovative thinking in higher education, philanthropy, and public affairs. He is also an adjunct

professor of public policy at Georgetown University and an adjunct scholar for public

policy research for the American Enterprise Institute where he specializes in social

policy issues. He is also a director of the Foreign Policy Research Institute and a

member of t,..e board of advisors to the president of the Naval War College.

From 1976 to 1983, Dr. Lenkowsky was the director of research at the Smith

Richardson Foundation in New York. He has served as a consultant to Senator Daniel

Patrick Moynihan and was an assistant to the Secretary of the Pennsylvania Department of Public Welfare. He has also been deputy director of the United States Information Agency and a member of the National Voluntary Service Advisory Board.

Dr. Lenkowsky completed his undergraduate education at Franklin and Marshall

College, Lancaster, Pennsylvania. His doctoral degree was awarded from Harvard

University. Dr. Lenkdwsky is the author of many books and articles. He lectures

frequently on philanthropy, social policy, and other issues.

Nanette Fabray MacDougall

Nanette Fabray MacDougall, a resident of Pacific Palisades, California, is a renowned

actress who developed a progressive hearing disability. Following four operations, the

condition that had threatened her with total deafness was cured. She nas continued

to be active in organizations benefiting hearing-impaired and other disabled persons.

Mrs. MacDougall was regional chairperson of the National Easter Seal Society

and the National Mental Health Association. She is past chairperson of the National

Advisory Committee for Education of the Deaf. She currently serves on the board of

the National Captioning Institute and the Better Healing Institute in Washington,

D.C., as well as the House Ear Institute and the Museum of Science and Industry.

Among the many awards she has received are the President's Distinguished

Service Award (1971). the Eleanor Roosevelt Humanitarian Award (1964), and the

Screen Actors Guild's Humanitarian Award (1986) for outstanding service. Mrs.

MacDougall and Helen Keller are the only two women ever to have received the

annual Public Service Award of the American Academy of Opthalmology and Otolaryngology. She has three honorary doctoral degrees, from Gallaudet College, Western

Maryland College, and MacMurray College. She was one of the original members of

the National Council on the Handicapped, and was reappointed by President Reagan.

Robert S. Muller

Robert Muller of Grandville, Michigan, joined Steelcase Inc. in 1966 and is currently

in administration. He is an adjunct assistant professor in the Department of Psychology at Aquinas College and in the Department of Education at Calvin College in

Grand Rapids, Michigan. He serves on the board of trustees for Hope Rehabilitation

95
Network in Grand Rapids. which serves 1.400 adults with disabilities. In April of

1981, he received an honorary degree in educational psychology from the Free University in Amsterdam, the Netherlands. Mr. Muller holds a B.S. degree in business

administration from Aquinas College and in 1978 was voted Outstanding Alumnus of

the Year. Mr. Muller has lectured at several colleges and universities, both nationally

and internationally. He is a board member of a number of national, State and local

organizations.

In May 1987. he and his wife. Carol, hosted a first-timz event at the White House

with the Vice President. The "Celebration of Disabled Americans at Work" was cosponsored by several major corporations throughout the United States. He presently

serves as chairman of the National Roundtable on Corporate Development for Americans with Disabilities. In May 1985, Mr. Muller was awarded the Liberty Bell Award

by the Grand Rapids Bar Association for his work toward "Liberty and Justice for

All."

Brenda Premo

Brenda Premo is a native of Southern California and currently resides in Stanton,

California. Ms. Premo has a small fraction of the vision many people take for granted.

She is legally blind, one of the characteristics of albino persons. along with pale skin

and snow white hair.

Ms. Premo received her bachelor of arts degree in psychology from California

State University at Long Beach. While attending college, she became acquainted with

other disabled students and became part of an activist group that helped to found

the Disabled Students Services at the University. After college, while working for the

Orange County Department of Education, Ms. Premo became part of a task force

which surveyed disabled persons in Orange County and called for an independent

living center to provide information and services to people of all disabilities. The

Dayle McIntosh Center was launched in November 1977 with Ms. Premo, age 25. as

its first director.

She was asked to go to Washington, D.C.. on a peer review team evaluating other

independent living centers, was active on the State Independent Living Advisory

Committee, served as vice president of the California Association of the Physically

Handicapped. and served two years as chairperson of the California Coalition of

Independent Living Centers. In 1981, she chaired the Orange County Task Force on

the International Year of Disabled Persons. Ms. Premo was recently elected president

of the California Foundation of Independent Living Centers.

Ms. Premo ht seen the recipient of many awards for her outstanding service to

the disabled community. She received the Handicapped Californian Award from the

California Association of the Physically Handicapped (1978); the regional Service to

Mankind Award from Sertoma International (1987); and the California Professional

Handicapped Woman of the Year Award from the Pilot Club (1987).

96
Father Harry J. Sutcliffe, D.D.

Father Harry J. Sutcliffe resides in Brooklyn, New York. He has been totally blind

since infancy and received his early education from the New York Institute for Education of the Blind. He earned a bachelor of arts degree, Magna Cum Laude, from

Wittenbere, University, a masters of divinity form the Mount Airy Theological Seminary and a doctor of divinity from the Episcopal Theological Seminary, both with

honors.

Father Sutcliffe is the founder of the Episcopal Guild for the Blind and has

served as its director since 1959. He also is employed as a classical language and

sacred studies instructor with the Hadley School for the Blind, Winnetka, Illinois. The

Hadley School operates the only home study program in the world for blind individuals, having an enrollment of more than 6,000 students representing all of the continents. The school offers over 100 courses in academics, independent living, and

homemaker skills.,

He is involved in many local and national organizations, including the American

Association for Education-and Rehabilitation of the Blind and Visually Impaired

Individuals, American School of Oriental Studies, Society of Biblical Literature,

Republican Presidential Task Force and State and national Republican Committees.

Father Sutcliffe has received numerous awards for his outstanding service,

including the B'nai B'rith Man of the Year Award (1959) in recognition of his' interfaith activities, particularly the teaching of Hebrew and Hebrew Braille to blind

persons of the Jewish faith; the Private Sector Initiative Commendation, given by the

President of the United States in recognition of exemplary community service (1986);

and the Excellence Award-from the Hadley School for the Blind (1986).

Father Sutcliffe serves as a strong advocate, not only for persons who are blind,

but for all persons with disabilities.

Joni Eareckson Tada

Joni Eareckson Tada is a resident of Woodland Hills, California. Mrs. Tada was

paralyzed from the shoulders down by a diving accident in 1967, at the age of 17.

She developed a latent artistic talent by painting with her mouth during two years of

rehabilitation. Her experiences were catalogued in an autobiography that has been

translated into 35 languages.

As founder and president of the Christian Fund for the Disabled, Mrs. Tada's goal

is to help churches reach out and meet the spiritual and practical needs of persons

with disabilities. This is accomplished through books, films, record albums, videos,

tapes, printed materials, seminars, and workshops. Also a five-minute radio program,

Joni and Friends, is aired every weekday over 400 religious stations in the United

States.

Among the many awards she has received are the Golden Plate (1979) from the

American Acadamy of Achievement; Penwoman of the Year (1980) from the National

L. 112 97
League of American Penwomen; Layperson of the Year (1985) from the National

Association of Evangelicals; The Courage Award (1985) fromthe Courage Rehabilitation Center; and the Excellence and Accomplishment Award (1985) from the Patricia

Neal Rehabilitation Center.

Roxanne S. Vierra

Roxanne S. Vierra, of Littleton, Colorado, has been actively involved in business as

well as in community and political affairs. Her son, Steven, had brain damage from

birth. His disability gave her insight into the needs of mentally retarded individuals.

This insight caused her to develop Retarded Unlimited, Inc., an organization designed

to establish business ventures owned and operated by mentally retarded persons.

Her objective is to make mentally retarded people more self-sufficient and less dependent on government funds. Steven is an example of what a mentally retarded

individual can do: He lives in his own apartment, works as a courtesy clerk at a

grocery store, and is relatively independent.

Mrs. Vierra, serves as an officer of the Children's Diabetes Foundation, which is

dedicated to finding a permanent cure for diabetes in children. She is on the board of

directors of the American Lung Association, and is past president ofthe board of

Childhelp USA, a national organization to prevent child abuse. She has campaigned

for and organized numerous activities in national elections, including fundraising in

President Reagan's campaign. In the business world, Mrs. Vierra has been a broker

associate for the Devonshire Company, selling residential property for the past eight

years.

Alvis Kent Waldrep, Jr,

Alvis Kent Waldrep, Jr. of Piano, Texas, is the president and chief executive officer of

the Kent Waldrep National Paralysis Foundation, a nonprofit organization dedicated

to finding a treatment and cure for paralysis caused by spinal cord injury. He is

responsible for all phases of daily operations including fundraising, budgeting, and

public awareness, through its national office in Dallas. From September 1982 to

June 1985, Mr. Waldrep was president of the American Paralysis Association.

From June 1979 to December 1981, Mr. Waldrep founded and served as chief

executive officer of the Kent Waldrep International Spinal Cord Research Foundation,

Inc., a nonprofit organization which became the American Paralysis Association. He

was responsible for planning and implementing all programs designed to meet the

objectives and goals of the Foundation.

Mr. Waldrep served as assistant sports information directorfor Texas Christian

University from April 1977 to June 1979. There, he assisted the sports information

director with all sports promotion programs, including media communication, brochure preparation, and compilation of statistics and advertising sales. This followed

three years of intensive physical therapy for a cervical spinal cord injury from a

football injury in 1974, which resulted in quadriplegia with paralysis from the neck

down.

98
He is a member- of several community and professional groups, including the

board of the Dallas Rehabilitation Institute and the National Society for Fundraising

Executives. He has been the recipient of many awards for his achievements in the

area of disability. Mr. Waldrep was selected by the United States Jaycees as one of

the ten outstanding young men in America for 1985. Mr. Waldrep was recently

named chairman of the Texas Governor's Committee on Disabled Persons.

Phyllis D. Zlotnick

Phyllis Zlotnick of West Hartford, Connecticut, has been employed by the Office of

Protection and Advocacy for-Handicapped and Developmentally Disabled Persons in

Hartford, since 1983. Born with Spinal Muscular Atrophy, Ms. Zlotnick is widely

recognized as a successful advocate for the rights inherent with full citizenship for all

disabled people. As a highly respected lobbyist in Connecticut, she is responsible for

changes in the State Building Code; removal of architectural barriers; access to

public transportation, housing, education, voting, employment, and parking; and

handicapped driver training programs. She has lectured, published articles, received

numerous awards, and served on many boards and advisory councils.

Ms. Zlotnick formerly was the Director of External Affairs for the Easter Seal

Society of Connecticut and later, an aide to the former Speaker of the House in the

State and General Assembly. Presently, she is a legislative consultant to the Protection and Advocacy Office in Connecticut and the chairperson of the State Personal

Care Assistance A.-risory Council.

99
References

Census Bureau. (1986). "Disability, Functional Limitation and Health Insurance

Coverage: 1984/85." Washington, DC.

Cranston, A. (January.29, 1987) "Statement for the Record regarding transportation

for people with disabilities," Congressional Record.. Washington, DC.

Department of Transportation. (1978), in Grey Advertising Inc. Technical Report of the

National Survey of Transportation of Handicapped People. Washington, DC: U.S.

Department of Transportation.

Harris, Louis. (1987). the ICD Survey II: Employing Disabled Americans. New York,

New York

Harris, Louis (1986). The ICD Survey of Disabled Americans: Bringing Disabled Americans into the Mainstream. New York, New York.

House Hearings Before a Subcommittee on Appropriations for Fiscal 1987 Appropriations. (1986). "National Council on the Handicapped," (pp. 431-489). Washington,

DC: GPO.

Human Services Research Institute. (1986). Compilation of Statistical Sources on Adult

Disability. Washington, DC: GPO.

Human Services Research Institute. (1985). Summary of Data on Handicapped Children and Youth. Washington, DC: GPO.

Independent Living Research Utilization Project. (1987). Brochure on Independent

Living. ILRU:-Houston, Texas.

Menninger Foundation. (1985). A Population Model of Working Age Disabled Individuals. Topeka, Kansas.

Menninger Foundation. (1986). The Relationship Between Age and Physical Disability

Among Workers: Implications for the Future. Topeka, Kansas.

Monitoring the Health of America's Children. (1984). Child Health Outcome Project,

University of North Carolina.

National Council on the Handicapped. (1986). Appendix to Toward Independence.

Washington, DC.

National C ..nail on the Handicapped. (scheduled for publication in 1988). Implication; for Federal Policy of the 1986 Harris Survey of Disabled Americans. Washington, DC.

National Council on the Handicapped. (1986). Toward Independence. Washington,

DC.

Reagan, R. (1986). "Letter upon receipt of Toward Independence." Washington, DC.

Reagan. R. (1982). Memorandum to the Attorney General, April 30, 1982. Washington, DC.

115 101
Senate Hearings Before the Committee on Appropriations for Fiscal 1987 Appropriations (1986). "National Council on the Handicapped," (pp. 791-814). Washington, DC: GPO.

United Cerebral Palsy Associations, Inc. (April 28, 1987)."The Development of Housing for Disabled Persons: Six Case Studies." Washington, DC.

United Cerebral Palsy Associations, Inc. (August 7, 1987). "A National Center on

Housing for Persons With Disabilities." Washington, DC.

Vachon, A. (1987). "Inventing A Future for Individuals with -Work Disabilities," chapter in The Changing Nature of Work, Society, and Disability: the Impact on Rehabilitation Policy. New York, New York World Rehabilitation Fund.

Will, M. (1984). OSERS Programming for the Transition of Youthwith Disabilities:

Bridges from School to Working Life. Washington, DC: U.S. Department of Education.

1 1. 6

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