            SHARING THE RISK AND ENSURING INDEPENDENCE:

      A DISABILITY PERSPECTIVE ON ACCESS TO HEALTH INSURANCE

                    AND HEALTH-RELATED SERVICES










Prepared for:

The National Council on Disability





Prepared by:

Lewin-ICF, Inc.













March 4, 1993






                       Letter of Transmittal


                                   March 4, 1993

The President
The White House
Washington, D.C.  20500

Dear Mr. President:

    On behalf of all members of the National Council on 
Disability, we submit to you a special report, Sharing the Risk 
and Ensuring Independence: A Disability Perspective on Access to 
Health Insurance and Health-Related Services.

    The Council prepared this report in consultation with an 
Advisory Committee on Access to Health Insurance and 
Health-Related Services; numerous persons with disabilities and 
their families; experts on health insurance and disability 
policy; advocates; providers; insurers; federal and state 
government agency representatives; and others interested in this 
important topic.  This report summarizes the findings of a study 
commissioned by the Council and presents the Council's 
recommendations for improving access to health insurance and 
health-related services for persons with disabilities.

    The National Council has a long-standing commitment to 
improving access to health insurance and health-related services. 
While the landmark Americans with Disabilities Act (ADA) opened 
many doors for persons with disabilities, it is clear that other 
major barriers to these opportunities still remain.  Access to 
health insurance and health-related services is a key factor 
affecting employment decisions and achievement of independence 
for persons with disabilities.  Furthermore, the experience of 
persons with disabilities in obtaining adequate health insurance 
reflects the problems facing millions of other Americans.  
Understanding the perspectives of persons with disabilities can 
provide important insights into how coverage might be better 
constructed to promote
The President

Page 2


the health and financial security of all Americans.  The Council 
is confident that the recommendations in this report will provide 
a foundation for a health insurance system that is better 
equipped to meet the needs not only of persons with disabilities 
and their families but of all Americans.

    We look forward to working with you as we seek to improve 
access to health insurance and health-related services for 
persons with disabilities.  In achieving this essential goal we 
must share the risk and thereby ensure independence for all.

Sincerely,





John A. Gannon                     Sandra Swift Parrino
Acting Chairperson                 Chairperson
February 1993-present              October 1983-January 1993






















(This same letter of transmittal was sent to the President Pro 
Tempore of the Senate and the Speaker of the House of 
Representatives.)

                          ACKNOWLEDGMENTS

     The Council wishes to acknowledge and convey its sincere 
     appreciation to the many individuals who contributed to this 
     report.  Members of the Advisory Committee, numerous persons 
     with disabilities and their families, providers, insurers, 
     federal agencies, state agencies, advocates, and other 
     experts from across the country contributed to this effort.  
     We are grateful for their participation in public forums, 
     their attendance at advisory meetings, and their input and 
     assistance to the Council in the process of developing the 
     ideas and recommendations contained in this report.  We 
     particularly thank William H. Graves, III, Ed.D., former 
     director of the National Institute on Disability and 
     Rehabilitation Research, who helped to make this project 
     possible.




            SHARING THE RISK AND ENSURING INDEPENDENCE:
      A DISABILITY PERSPECTIVE ON ACCESS TO HEALTH INSURANCE
                    AND HEALTH-RELATED SERVICES


Publication date:  March 4, 1993

National Council on Disability
800 Independence Avenue, S.W.
Suite 814
Washington, D.C.  20591

(202) 267-3846 Voice
(202) 267-3232 TDD
(202) 453-4240 Fax

The views contained in this report do not necessarily represent 
those of the administration, as this document has not been 
subjected to the A-19 Executive Branch review process.
                         TABLE OF CONTENTS

                                                             Page

     MISSION OF THE NATIONAL COUNCIL ON DISABILITY..............v

     NATIONAL COUNCIL ON DISABILITY, MEMBERS AND STAFF........vii

     MEMBERS OF THE ADVISORY COMMITTEE.......................viii

     PROJECT STAFF.............................................ix

     EXECUTIVE SUMMARY..........................................1

     A DISABILITY PERSPECTIVE ON HEALTH INSURANCE..............11

     BACKGROUND AND INTRODUCTION TO THE REPORT.................13

     FINDINGS ON BARRIERS TO HEALTH INSURANCE
       AND HEALTH-RELATED SERVICES.............................14

     RECOMMENDATIONS OF THE NATIONAL COUNCIL...................29

           A. Expand Access to Health Insurance................30

           B. Reduce Barriers to Employment....................37

           C. Improve Adequacy of Health Services Coverage.....38

           D. Develop an Integrated and Coordinated
              Delivery System..................................41

           E. Establish a Research Agenda of Disability
              and Health Issues................................44

     NATIONAL COUNCIL MEMBER AND STAFF BIOGRAPHIES.............49

     APPENDIX..................................................61

           Consortium for Citizens for Disabilities Health Task 
           Force:  Principles for Health Care Reform from a 
           Disability Perspective

           Statement of Principle of the National Study Group on 
           Health Care System Reform and Peresons with 
           Disabilities
           MISSION OF THE NATIONAL COUNCIL ON DISABILITY


     The National Council on Disability is an independent federal 
agency composed of 15 members appointed by the President of the 
United States and confirmed by the U.S. Senate. The National 
Council was established in 1978 as an advisory board within the 
Department of Education (P.L. 95-602). The Rehabilitation Act 
Amendments of 1984 (P.L. 98-221) transformed the National Council 
into an independent agency. The statutory mandate of the National 
Council at the time of this study assigned the Council the 
following duties:

       Establishing general policies for 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 individuals with disabilities conducted or 
        assisted by federal departments or agencies and all 
        statutes pertaining to federal programs, and assessing 
        the extent to which these provide incentives to 
        community-based services for, promote full integration 
        of, and contribute to the independence and dignity of 
        individuals with disabilities;

       Making recommendations of ways to improve research; the 
        collection, dissemination, and implementation of research 
        findings; service; and administration affecting persons 
        with disabilities;

       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 research 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 continuous basis, advice, 
        recommendations, and any additional information that the 
        National Council or the Congress considers appropriate;

       Providing guidance to the President's Committee on the 
        Employment of People with Disabilities; 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 
        National 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 that 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 National Council recognizes its unique 
opportunity to facilitate independent living, community 
integration, and employment opportunities for people with 
disabilities by ensuring an informed and coordinated approach to 
addressing their concerns and eliminating barriers to their 
active participation in community and family life.
        NATIONAL COUNCIL ON DISABILITY, MEMBERS AND STAFF*


Members

John A. Gannon, Acting Chairperson
Cleveland, Ohio, and Washington, D.C.

Kent Waldrep, Jr., Vice Chairperson
Plano, Texas

Linda W. Allison
Dallas, Texas

Ellis B. Bodron
Vicksburg, Mississippi

Larry Brown, Jr.
Potomac, Maryland

Mary Ann Mobley Collins
Beverly Hills, California

Anthony H. Flack
Norwalk, Connecticut

John Leopold
Pasadena, Maryland

Robert S. Muller
Grandville, Michigan

George H. Oberle, P.E.D.
Stillwater, Oklahoma

Sandra Swift Parrino
Briarcliff Manor, New York
Mary Matthews Raether
McLean, Virginia

Anne Crellin Seggerman
Fairfield, Connecticut

Michael B. Unhjem
Fargo, North Dakota

Helen Wilshire Walsh
Greenwich, Connecticut

Staff

Andrew I. Batavia, J.D., M.S.
Executive Director

Billie Jean Hill
Program Specialist

Mark S. Quigley
Public Affairs Specialist

Brenda Bratton
Executive Secretary

Stacey S. Brown
Staff Assistant

Janice Mack
Administrative Officer

Lorraine Williams
Office Automation Clerk

*Sandra Swift Parrino initiated this study when she was 
Chairperson of the National Council on Disability.  At the time 
of the study, Ethel Briggs was Executive Director, Harold Snider 
was Deputy Director, Katherine Seelman was Research Specialist 
and Kathy Roy Johnson was Program Specialist at the National 
Council.
                 MEMBERS OF THE ADVISORY COMMITTEE


Barbara M. Altman, Ph.D.
Rockville, Maryland

Andrew I. Batavia, J.D., M.S.
Washington, D.C.

Ken Campbell (Cochair)
Columbus, Ohio

Ann P. Dandrow
Southington, Connecticut

Joseph Patrick Ditre
Sabattus, Maine

Daniel M. Fox, Ph.D.
New York, New York

Thomas A. Gustafson, Ph.D.
Washington, D.C.

Mary Nell Lehnhard
Washington, D.C.

Douglas Martin, Ph.D.
Los Angeles, California

Lynn Meyers
Washington, D.C.
Velvet G. Miller
Brookline, Massachusetts

Patricia M. Owens
Brooklyn, New York

Susan B. Parker
Baltimore, Maryland

Earl R. Pomeroy (Cochair)
Bismarck, North Dakota

Eileen Rivera
Baltimore, Maryland

Mark Ross, Ph.D.
New York, New York

Susan T. Sherry
Boston, Massachusetts

Daniel R. Thomas
Washington, D.C.

Irving Kenneth Zola, Ph.D.
Waltham, Massachusetts










                           PROJECT STAFF


Chairperson
John A. Gannon
National Council on Disability
Committee on Health Insurance

Project Officer
Katherine D. Seelman, Ph.D.
National Council on Disability

Project Director
Judith Arnold
Lewin-ICF

Project Manager
Jessica Miller
Lewin-ICF

Policy/Research Associates
Joyce Sher, Lewin-ICF
Marni Gwyther, Lewin-ICF

Consultant
Jane West, Ph.D.
Jane West and Associates
               EXECUTIVE SUMMARY


   Access to health insurance fundamentally affects the lives of 
Americans with disabilities, influencing their decisions on 
occupation, employment, and living arrangements.  For persons 
with disabilities, the current health care crisis is not new; 
they have faced an ongoing struggle to obtain and retain the 
health care coverage they need to live independently and 
productively.  Recently, growing numbers of people without 
disabilities are also facing barriers to affordable health 
insurance.  As problems of access and cost intensify, the 
political pressure for comprehensive health care reform has 
increased dramatically.
Persons with disabilities have faced an ongoing struggle to 
obtain and retain the health care coverage they need to live 
independently and productively.

   People with disabilities have an enormous stake in health care 
reform.  They are the individuals who have been most adversely 
affected by the current health care system.  They have the 
poorest access to private sector coverage, with its exclusions, 
limitations, and restrictive underwriting practices.  Those who 
are fortunate enough to have insurance are typically 
underinsured, with coverage packages that are oriented to acute 
care and that do not meet their specific chronic and long-term 
care needs.  Efforts by insurers and employers to contain costs 
have imposed a disproportionate burden on many people with 
disabilities.  Many are deterred from seeking employment or 
changing their employment status because of concerns over health 
care coverage.


   The National Council on Disability (NCD) is committed to 
promoting reforms that advance options for independence and 
productivity for persons with disabilities.  In originally 
proposing the Americans with Disabilities Act (ADA), the Council 
asserted that access to health insurance and health-related 
services critically affects the ability of persons with  While 
the ADA did not resolve the problem of access to health care 
coverage for persons with disabilities, it improves access by 
requiring employers to offer employees with disabilities the same 
health benefits as those without disabilities and by prohibiting 
insurers from treating persons with disabilities differently 
without actuarial justification.

   The National Council remains committed to addressing the 
problem of access to health insurance so that the promise of the 
ADA may be realized.  The Council supports comprehensive health 
care reform that offers universal access to adequate coverage at 
an affordable cost for all Americans.  It believes that any 
proposal for reform must be designed from the outset to meet the 
needs of people with disabilities.  A disability perspective will 
help us address the fundamental problems of our health care 
system for people with and without disabilities, and will 
therefore benefit all Americans.


The National Council believes that any proposal for health care 
reform must be designed from the outset to meet the needs of 
people with disabilities.
I. SCOPE OF THE STUDY

   The National Council on Disability is the federal agency 
responsible for advising Congress and the President on public 
policy affecting people with disabilities.  As part of its 
continuing efforts to support independence for persons with 
disabilities, the Council commissioned Lewin-ICF to conduct the 
study entitled "Sharing the Risk and Ensuring Independence: A 
Disability Perspective on Access to Health Insurance and 
Health-Related Services."  The study was designed to identify the 
major issues of access to health insurance and health-related 
services for persons with disabilities and to develop 
recommendations that reflect a disability perspective on how 
these issues could be addressed.

   The findings and recommendations from the study are based on a 
comprehensive review of the literature and the testimony of over 
75 individuals who participated in three public forums.  An 
Advisory Committee of experts and advocates on disability and 
health policy also provided valuable insights during the two-year 
study.  This final report presents the findings of the study and 
the National Council's recommendations based on those findings.  
The full study is available upon request.


II.FINDINGS

   Throughout the course of its study, the Council was reminded 
that access to adequate health insurance is a serious problem for 
persons with disabilities that affects their ability to live 
independently.  An estimated 3 million persons with 
disabilities--15 percent of the population with 
disabilities--lack any form of health insurance.  Millions more 
do not have access to adequate health insurance.  The study 
identified eight additional findings that illustrate the major 
obstacles to accessing health insurance and health-related 
services.



About 3 million persons with disabilities have no health 
insurance and millions more have inadequate coverage.
Finding 1:

   Persons with disabilities face major hurdles in obtaining 
   adequate private health insurance.  While about 60 percent of 
   the population with disabilities has private health insurance, 
   this insurance is unavailable or does not meet the needs of 
   many others.  Private insurance often seeks to minimize the 
   risk of serious illness and, as a result, may exclude persons 
   with disabilities from coverage.  The following are two of the 
   major reasons private insurance is less accessible to persons 
   with disabilities:

   ù Medical underwriting and preexisting-condition exclusions 
     restrict access to private insurance for persons with 
     disabilities
     and may constitute a discriminatory practice.  These 
     insurance practices limit the availability and adequacy of 
     private insurance for persons with disabilities by allowing 
     insurers to restrict or exclude coverage of individuals with 
     certain health conditions or services associated with 
     treating a specific condition.

   ù The employment-based private insurance system adversely 
     affects access to private health insurance, particularly for 
     individuals with disabilities who are self-employed or 
     employed by small firms.  While being employed typically 
     facilitates access to private insurance, it does not 
     guarantee it.  Some employers, especially small firms, do 
     not offer coverage.  Individuals with disabilities employed 
     in small businesses that do offer insurance may find that 
     they are excluded from their employer's insurance policy 
     based on their health status.  An employer often is unable 
     to obtain insurance for other workers if the person with a 
     disability is included in the coverage.  Self-employed 
     persons with disabilities face extremely high premiums when 
     obtaining private insurance on an individual basis.
Private insurance often seeks to minimize the risk of serious 
illness and, as a result, may exclude persons with disabilities 
from coverage.
Finding 2:

   The public health insurance system in the United States 
   fosters dependence rather than independence and isolation 
   rather than integration.  When unable to obtain private health 
   coverage, persons with disabilities seek public insurance.  
   Public health insurance programs, however, impose requirements 
   and restrictions that, like private insurance, limit access to 
   needed services, affect decisions about employment, and 
   influence the individual's independence.

   ù Limitations in the range of services covered under public 
     programs may require that an individual be institutionalized 
     to receive needed services.  Medicare and Medicaid cover 
     certain services only when they are provided in specified 
     settings or by designated providers.  These limitations mean 
     that persons with disabilities have little choice in how 
     their care is provided and may be required to enter an 
     institution to access needed services.  Without coverage for 
     certain services, such as personal care, individuals may 
     require institutionalization.

   ù People with disabilities often forego employment 
     opportunities in order to maintain public health insurance.  
     The eligibility requirements of public programs for persons 
     with disabilities are typically related to an inability to 
     work.  If individuals become employed and earn more than a 
     designated amount, they may eventually lose their 
     eligibility for public insurance and thus their access to 
     needed services.  Despite recent legislation to reduce
     this work disincentive, the link between income and access 
     induces many persons with disabilities to forego or limit 
     employment in order to retain insurance coverage.

Finding 3:

   Persons with disabilities feel that their employment choices 
   are limited by the availability and adequacy of health 
   insurance.  The spirit of the Americans with Disabilities Act 
   is diluted by the lack of adequate insurance protection.  The 
   employment opportunities and protections promised by ADA offer 
   little for persons with disabilities whose concern about 
   access to adequate health insurance drives their employment 
   decisions, including whether to change jobs or whether to 
   accept employment at all.

Finding 4:

   The emphasis on acute and episodic care rather than on 
   prevention and wellness runs counter to the needs and 
   objectives of many persons with disabilities.  The "medical 
   model," around which the U.S. health care system is 
   structured, focuses on curing and improving health status and 
   fails to consider the long-term service needs associated with 
   many disabilities.   Persons with disabilities often require 
   ongoing services simply to maintain the functional ability 
   necessary to pursue independence.  In addition, the onset of 
   both initial and secondary disabilities could be deterred or 
   avoided if preventive services were promoted and available on 
   a regular basis.  With the emergence of the "new morbidities," 
   such as acquired immunodeficiency syndrome (AIDS), substance 
   abuse, environmental illness, and trauma caused by violence, 
   the availability of ongoing and preventive services will 
   become even more important.

Finding 5:

   The range of services covered by insurance is typically 
   limited and often restricts or excludes coverage of many 
   services that are important for persons with disabilities to 
   achieve independence.  Health-related services that help 
   maintain or substantially improve an individual's level of 
   functioning, such as assistive devices and personal 
   assistance, are rarely covered by insurance; if these services 
   are covered, the coverage is often restricted in amount, 
   duration, and scope.  In addition, the preventive care 
   necessary to avoid the onset of secondary disability is often 
   excluded from coverage.

Finding 6:









The medical model, on which the U.S. health care system is 
fundamentally based, focuses on curing and improving health 
status and does not adequately consider the long-term service 
needs of many people with disabilities.
   International policies toward persons with disabilities are 
   geared toward returning individuals to work through a 
   combination of health insurance and complementary programs of 
   social assistance.  Health policies in several countries 
   recognize that medical and health-related service needs differ 
   across populations and that to live independently, persons 
   with disabilities may require services that are not needed by 
   the majority of the population.  In order to meet these needs, 
   these countries often explicitly integrate more traditional 
   medical benefits with social assistance programs that offer 
   health-related services to ensure a continuum of care for 
   persons with disabilities and other specific populations.  For 
   persons with disabilities in particular, the coordination of 
   systems encourages employment, independence, and community 
   participation.
Health-related services that help maintain or improve an 
individual's functional capacity, such as assistive devices and 
personal assistance services, are not adequately covered by most 
public and private insurance.
Finding 7:

   It is difficult to define precisely the nature and extent of 
   the barriers to health insurance faced by persons with 
   disabilities because estimates of the number of persons with 
   disabilities vary and this population is so diverse.  The 
   different definitions of disability used by public programs 
   and surveys hinder efforts to develop a comprehensive profile 
   of this population or of the relationship between disability 
   and access to health insurance.  Moreover, the lack of a 
   comprehensive survey of persons with disabilities makes it 
   difficult to analyze subsets of the disability population.

Finding 8:

   The experience of persons with disabilities provides important 
   lessons about the problems faced by millions of other 
   Americans.  Access to health insurance for individuals and 
   their families has become a primary concern for most 
   Americans.  The difficulties in obtaining adequate health 
   insurance that persons with disabilities experience provide 
   poignant examples of the problems more Americans will face as 
   health care costs rise and the population ages.  Resolving the 
   insurance problems of persons with disabilities will likely 
   alleviate similar difficulties for millions of other 
   Americans.

III.RECOMMENDATIONS


   Changes in both the public and private insurance systems are 
necessary to eliminate the access barriers faced by persons with 
disabilities.  During the course of the study and three public 
forums, participants suggested numerous ways that access to 
adequate health
insurance for persons with disabilities might be improved.  In 
light of these perspectives, the Council has developed 22 
recommendations that focus on strategies to improve both access 
to and adequacy of health insurance coverage for persons with 
disabilities.  Together, these measures promote the objectives of 
both the disability community and ADA--helping individuals 
achieve equal opportunity and independence.

Recommendation 1:

   Congress and the Administration should ensure that any health 
   care reform plan adequately meets the needs of  persons with 
   disabilities, including full portability of coverage and a 
   broad scope of benefits.






Enact health care reform designed from the outset to meet the 
needs of people with disabilities, including full portability of 
coverage and a broad scope of benefits.

Recommendation 2:

   Congress should enact legislation mandating community rating 
   for all health insurance plans as a means of spreading the 
   health insurance risk and reducing the cost of coverage for 
   persons with disabilities.

Recommendation 3:

   Congress should enact legislation mandating the elimination of 
   preexisting-condition exclusions and waiting periods to 
   increase the availability of private insurance coverage for 
   persons with disabilities.

Recommendation 4:

   Congress should halt discriminatory insurance practices by 
   enacting legislation prohibiting medical underwriting that 
   excludes individuals from groups on the basis of their health 
   status.

Recommendation 5:

   Congress should enact legislation mandating that insurance be 
   guaranteed for small groups and individuals.  Such a law would 
   prohibit insurers from dropping persons from coverage because 
   of deteriorating health and would promote portability of 
   coverage.




The recommendations of the National Council on Disability are 
designed to offer equal access to health insurance and 
health-related services for persons with disabilities, and to 
thereby enhance their ability to live independently and 
productively in their communities.
Recommendation 6:

   Congress should enact legislation that regulates annual 
   insurance premium increases in order to stabilize health 
   insurance costs.

Recommendation 7:

   Congress should amend the Internal Revenue Code to permit 
   greater deductions for health care, personal assistance, and 
   assistive technology expenses for persons with disabilities.

Recommendation 8:

   Congress should amend the Social Security Act to eliminate the 
   24-month waiting period for Medicare benefits to ensure 
   continuity of coverage for qualified persons with 
   disabilities.

Recommendation 9:

   Congress should mandate a Medicaid buy-in for persons with 
   disabilities to reduce employment disincentives.

Recommendation 10:

   Congress should expand Section 1619 work incentive provisions 
   of the Social Security Act to Medicare.  This would reduce 
   employment disincentives for Medicare beneficiaries.


Reform public health insurance to expand access to Medicare and 
Medicaid for persons with disabilities, and to reduce barriers to 
employment for persons with disabilities.
Recommendation 11:

   Congress should revise the Medicare benefit structure to 
   better meet the needs of beneficiaries with disabilities.

Recommendation 12:

   Congress should mandate the expansion of home- and 
   community-based service options to reduce the unnecessary 
   institutionalization of persons with disabilities in public 
   insurance programs.


Improve adequacy of health services coverage, and expand personal 
assistance options available to people with disabilities.
Recommendation 13:

   Congress should expand access to personal assistance services 
   and assistive devices either by earmarking an annual 
   appropriation to the Social Services Block Grant (Title XX) or 
   by mandating Medicaid coverage.  In addition, states should be 
   permitted to introduce a buy-in component to programs that 
   provide these services so all persons with disabilities may 
   have access to them regardless of ability to pay.


Recommendation 14:

   Congress should establish an Office of the Assistant Secretary 
   for Disability at the Department of Health and Human Services 
   to ensure a disability perspective in all future health care 
   policy.
Recommendation 15:

   Congress should require state and local agencies that receive 
   federal funds to support services for persons with 
   disabilities to develop coordinated service delivery plans 
   integrating health and social services.
Develop an integrated and coordinated delivery system focused on 
maintaining health.

Recommendation 16:

   The Secretary of the Department of Health and Human Services 
   should encourage schools for health professionals to develop 
   curricula that educate providers about the health concerns of 
   persons with disabilities.

Recommendation 17:

   The Agency for Health Care Policy and Research should 
   encourage those who study treatment effectiveness to consider 
   outcomes that are relevant to persons with disabilities.


Recommendation 18:

   Congress should direct the Social Security Administration to 
   assess its outreach program for encouraging use of 
   Supplemental Security Income (SSI) work incentives, and to 
   determine why participation is low under Section 1619 and 
   other work incentive provisions.

Recommendation 19:

   Congress should authorize and fund a consensus conference on 
   developing an acceptable definition of disability that could 
   be used as a basis for national surveys.

Recommendation 20:

   Congress should require the Bureau of the Census to conduct a 
   survey to determine the extent to which persons with 
   disabilities and others lack adequate health insurance.


Establish a research and training agenda of disability and health 
issues to expand the knowledge base on access to health insurance 
and health-related services for persons with disabilities.
Recommendation 21:

   Congress should direct the Department of Labor, the Social 
   Security Administration, and the Health Care Financing 
   Administration (HCFA), in consultation with the National 
   Council on Disability, to design a study assessing the scope 
   and consequences of underemployment among the population with 
   disabilities that often results from work disincentives in 
   public insurance programs.

Recommendation 22:

   Congress should authorize and fund the National Council on 
   Disability to commission a study examining the health 
   consequences and secondary disabilities that persons with 
   disabilities may suffer because of lack of timely, appropriate 
   treatment.
Develop a common definition of disability for survey purposes and 
collect data on all aspects of health insurance and 
health-related services for persons with disabilities.

IV.CONCLUSION

   The problems persons with disabilities face in accessing 
health insurance and health-related services are acute.  They 
threaten the health and independence of this group and reflect 
the growing problems that face the general population in 
obtaining needed health services.  A disability perspective on 
health insurance and health-related services can inform the 
national health insurance debate by introducing as the measure of 
success the ability to maximize individual functional potential 
and independence.  The recommendations of the National Council 
would expand the availability and affordability of health 
insurance and optimize independence for all persons with 
disabilities.  Without these proposed changes, the human 
potential of millions of Americans may be wasted.


The recommendations of the National Council would expand the 
availability and affordability of health insurance and optimize 
independence for all persons with disabilities.

           A DISABILITY PERSPECTIVE
              ON HEALTH INSURANCE

   ". . . the health insurance system in this nation should be 
   founded on the principle of sharing risk, not on the principle 
   of avoiding risk.  We are all at risk: the risk of developing 
   a disability or having children with costly medical 
   conditions.  The system we now have punishes the very people 
   it should be designed to serve.  It is a system which . . . 
   caters to the healthy and least needy and seeks to avoid the 
   most needy."

          Sandra Swift Parrino, former Chairperson,
          the National Council on Disability


   For persons with disabilities, concerns about access to 
adequate and affordable health insurance drive decisions about 
many aspects of life.  Such concerns influence decisions on 
occupation, employment, and living arrangements.  For a woman 
with multiple sclerosis, the parents of a deaf child, or a man 
with cerebral palsy, the need for adequate health insurance may 
mean choosing unemployment, never marrying, or remaining in an 
institution.
Concerns over access to health insurance influence decisions on 
occupation, employment, and living arrangements.
   The current health insurance crisis is not new for persons 
with disabilities; this population has faced an ongoing struggle 
to obtain and retain the health insurance necessary to achieve 
functional potential and independence.  While the passage in 1990 
of the Americans with Disabilities Act (P.L. 101-336) marked an 
important milestone in the progress toward equal opportunity in 
employment and services, it did not provide similar opportunity 
for access to health insurance.  As a result, access to adequate 
and affordable health insurance remains on the policy agenda for 
the disability community and the National Council on Disability.

   Increasingly, a growing number of Americans without 
disabilities are finding themselves facing the same barriers to 
health insurance as those with disabilities.  As these problems 
have affected a larger proportion of the general population, the 
dissatisfaction with the current health care and insurance system 
has increased and the urgency to address the problems has 
intensified.









A growing number of Americans find themselves facing the same 
barriers to health insurance as persons with disabilities.

   Access to adequate and affordable health insurance is a major 
issue on the national policy agenda and is likely to remain a 
domestic priority throughout the decade.  The debate over health 
care reform has focused on expanding coverage to the  uninsured 
and containing spiraling health care costs.  To date, the debate 
has not incorporated the perspectives of
the disability community, even though the experience of this 
population clearly highlights the experiences of millions of 
other Americans.

   A disability perspective on health care reform can inform this 
debate by providing insights into how coverage might be better 
structured to promote the functional well-being, wellness, and 
independence of all Americans.  These issues will gain greater 
prominence as increasing numbers of Americans live longer with 
chronic and disabling conditions.  The time is right to adopt a 
disability perspective on health care reform.


          BACKGROUND AND INTRODUCTION
                 TO THE REPORT

   As the federal agency responsible for advising Congress and 
the President on public policy affecting people with 
disabilities, the National Council on Disability commissioned 
this study on access to health insurance and health-related 
services for individuals with disabilities to examine the health 
care issues affecting the disability community and to clearly 
articulate its perspective on health insurance.

   This report highlights the findings of the two-year study 
conducted by Lewin-ICF.  These findings were developed through a 
review of the literature and a series of public forums in which 
over 75 persons, including consumers, advocates, parents of 
children with disabilities, health care providers, insurers, 
employers, policymakers, and others with an interest in 
disability policy, shared their views with the Council.  These 
findings are the basis for the Council's recommendations on 
improving access and implementing a disability perspective on 
health care reform.

   The Council intends to engage policymakers, the disability 
community, and others in an informed debate about the future of 
the U.S. health insurance system and access to health-related 
services for persons with disabilities.  The remainder of this 
report is presented in two sections:

    Findings on Barriers to Health Insurance and Health-Related 
     Services for persons with disabilities.  The review of the 
     literature and other supporting evidence for the findings 
     are found in a supplement to this report.

    Recommendations to address the problems identified in the 
     findings.  The recommendations represent the National 
     Council on Disability's perspective on access to health 
     insurance and health-related services for people with 
     disabilities.
The findings of the study and the recommendations of the National 
Council are based on the extensive input of experts and advocates 
who address issues concerning health care and disability, 
including numerous people with disabilities and members of their 
families.

   FINDINGS ON BARRIERS TO HEALTH INSURANCE
          AND HEALTH-RELATED SERVICES


   Access to adequate health insurance is a serious problem for 
persons with disabilities and affects their ability to live 
independently.  Many persons with disabilities face ongoing 
health care needs, and living without insurance is not a viable 
option.  Some of these individuals structure their lives around 
securing health insurance.  Maintaining health insurance coverage 
may mean choosing unemployment, living with parents, never 
marrying, or remaining in an institution.  Despite their efforts, 
an estimated 3 million persons, or 15 percent of the population 
with disabilities, lack any form of health insurance.






The major barrier to access to care is the lack of adequate and 
appropriate coverage.
   For most persons with disabilities, simply having insurance is 
not enough.  Many are denied care because they  lack adequate and 
appropriate coverage for needed services such as prescription 
drugs, rehabilitation, and assistive technology.  Coverage for 
these services is often excluded or restricted, deterring some 
individuals from receiving needed care and causing them to to 
risk serious illness and impaired functioning.  Examples of the 
consequences of inadequate coverage are many:

   ù A woman with hypertension who has no coverage for her 
     prescription drugs and foregoes several days of medication 
     because she cannot afford it and is later hospitalized with 
     a stroke.

   ù A child with a speech impairment who cannot obtain speech 
     therapy and falls behind in school.

   ù A man with postpolio syndrome who cannot obtain personal 
     assistance and who must be institutionalized even though he 
     is able to work and lead an independent life with 
     assistance.
"Although our family was able to secure basic health insurance 
benefits, we were unsuccessful at obtaining adequate coverage for 
our son's intensive medical needs."
   This study found that persons with disabilities who seek 
adequate health insurance encounter barriers in the private and 
public insurance system, incentives that encourage dependence 
rather than independence, and a health care system that is not 
designed to meet their needs.  These observations are reflected 
in eight findings that support the overall conclusion of the 
study--that access to adequate health insurance is a serious 
problem for people with disabilities that affects their ability 
to live independently.  Supporting research and data are found in 
a supplement to this report.

Finding 1:

   Persons with disabilities face major hurdles in obtaining 
   adequate private health insurance.

   Private health insurance is the major source of coverage for 
   persons with disabilities; over 60 percent of persons with a 
   limitation in their major activity have private health 
   insurance.  Despite the large number of persons with 
   disabilities who have private health insurance, this coverage 
   remains unobtainable for many in the disability community.  
   Private health insurance is becoming a luxury for the healthy 
   as insurers find ways to exclude persons who show any risk of 
   incurring medical expenses.  In addition, insurers are 
   increasingly reluctant to offer policies to small employers 
   and individuals because of concerns about the predictability 
   of expenses among these groups.  In particular, two aspects of 
   private health insurance--medical underwriting and 
   preexisting-condition exclusions--have important, and often 
   detrimental, consequences for persons with disabilities.







"An insurer would not write homeowner's insurance on someone 
whose house is on fire, nor would an insurer want to sell health 
insurance to someone as he is entering the hospital."
   ù Medical underwriting and preexisting-condition exclusions 
     restrict access to private insurance for persons with 
     disabilities and may constitute discriminatory practices.

   Medical underwriting and preexisting-condition exclusions 
   limit the availability and adequacy of private insurance for 
   persons with disabilities by allowing insurers to restrict or 
   exclude coverage for individuals with certain health 
   conditions or for services associated with treating a specific 
   condition.  Medical underwriting is the process by which an 
   insurer selects the risks it will (and will not) insure and 
   determines whether a person with a disability is "medically 
   uninsurable."  Medical underwriting permits insurance 
   companies to review an individual's medical history to 
   determine whether or not that individual is a good risk in 
   terms of expected use of health insurance.  Studies indicate 
   that the list of conditions excluded from coverage or subject 
   to limitations has grown longer.




"Preexisting-condition clauses make it impossible for most of us 
to obtain insurance for our children."
   Exclusions on the basis of preexisting conditions are also 
   prevalent and problematic for persons with disabilities.  
   Preexisting-condition exclusions are used to reduce an 
   insurer's expected first-year medical claims expense.  While 
   health insurance may be offered to an individual with a 
   disability, it may not cover a condition that existed prior to 
   the time the individual sought coverage.  For example, a woman 
   with multiple sclerosis may be able to obtain private health 
   insurance, but services related to her multiple sclerosis may 
   be uncovered for a year.  Because she cannot remain uncovered 
   for services related to her disability for an entire year, she 
   may choose to stay on public insurance.  The most common 
   preexisting-condition limitations are exclusions for certain 
   services and waiting periods.  Although these provisions are 
   legal and are considered by insurers to constitute sound 
   business practice, they essentially discriminate against 
   persons with disabilities.

   These insurance practices make it unlikely that persons with 
   disabilities will be able to obtain private insurance and 
   suggest that without change some may lose their private 
   coverage. Regardless of past medical claim experience, many 
   persons with disabilities are automatically excluded from 
   private insurance based on their disability.  Others must 
   accept coverage that excludes services related to their 
   disability or chronic condition or hope they remain healthy 
   until the waiting period expires.  If persons with 
   disabilities are to realize their goals of independence and 
   self-sufficiency, changes in private insurance practices must 
   occur.

   ù The employment-based private insurance system adversely 
     affects access to private health insurance, particularly for 
     individuals with disabilities who are self-employed or 
     employed by small firms.






While being employed increases the likelihood that a person with 
a disability will have access to adequate insurance, it does not 
guarantee it.

   Many persons with disabilities discover that it is difficult, 
   if not impossible, to obtain private health insurance in the 
   U.S. employment-based insurance system.  While being employed 
   facilitates access to employment-based insurance, it does not 
   guarantee it.  Some employers, particularly small firms, do 
   not offer insurance.  Some persons with disabilities employed 
   by small businesses that do offer insurance may find 
   themselves excluded from coverage based on their health 
   status.  Small employers are often unable to obtain insurance 
   for other workers if an employee with a disability is included 
   on the policy.


   Self-employed persons with disabilities also face restricted 
   access to private health insurance.  Since they are not part 
   of an employer group, self-employed individuals must seek 
   private insurance from the individual insurance market.  Over 
   time, the individual market has become restricted as many 
   insurers have discontinued their individual policies in an 
   effort to control rising costs.  Some individual insurance 
   plans exclude persons with disabilities altogether.  When 
   individual coverage is available, it is extremely expensive 
   and the scope of covered services is typically limited.

"If you can find an individual carrier willing to cover an 
individual with disabilities, the cost is outrageous or the 
deductible unbelievable."
   Those who are self-employed and do not have access to employer 
   group coverage have few alternatives.  While some may be able 
   to obtain and afford individual coverage, and some may be able 
   to access private insurance through a spouse or parent, others 
   will seek
   public insurance or remain uninsured. Even for those who 
   successfully obtain private insurance, there is no guarantee 
   that this coverage will provide the services required to meet 
   their needs.  While the ADA will enhance access to adequate 
   coverage by requiring employers to offer the same benefit 
   packages to people with disabilities as to other employees and 
   by prohibiting insurers from treating people with disabilities 
   differently without sound actuarial justification, it will not 
   eliminate the problem.

Finding 2:

   The public health insurance system in the United States 
   fosters dependence rather than independence, and isolation 
   rather than integration.


   When unable to obtain private health insurance, many persons 
   with disabilities seek public insurance.  Together, the 
   federally supported programs of Medicare and Medicaid finance 
   health services for about 5 million persons with disabilities.  
   These programs are important sources of health care coverage 
   that could potentially restore and maintain the health and 
   self-sufficiency of many persons with disabilities.  However, 
   they impose requirements and restrictions that, like private 
   insurance, limit access to needed services, affect decisions 
   about employment, and influence independence.


   ù Limitations in the range of services covered under public 
     programs may require that an individual be institutionalized 
     to receive needed services.

   The coverage restrictions of both Medicare and Medicaid 
   present a significant obstacle to independence.  Both programs 
   cover certain services only when they are provided in 
   specified settings or by designated providers.  Medicare will 
   pay for only certain pieces of durable medical equipment, and 
   may limit the circumstances under which coverage is available 
   (e.g., wheelchairs for use in the home only).  Medicaid has an 
   inherent institutional bias whereby certain services are 
   covered only in inpatient hospital or institutional settings.  
   As a result, persons with disabilities are often 
   institutionalized, rather than kept in the community, in order 
   to receive necessary health care services.  For example, all 
   states must cover physical therapy in hospital settings under 
   Medicaid, but physical therapy provided on an outpatient basis 
   by an independent practitioner may not be covered.  Other 
   services may be provided in noninstitutional settings only if 
   the alternative setting is cost-effective.  Therefore, 
   providing individuals with services in a home-
   or community-based setting is largely at the program's 
   discretion; there is little consideration of an individual's 
   preference or choice.







"Medicare stipulates that in order to purchase a wheelchair, the 
wheelchair be only used indoors.  Medicare does not see outdoor 
use as `medical justification' for approving an electric 
wheelchair."
   ù People with disabilities often forego employment in order to 
     maintain health insurance through public programs.


   Both Medicare and Medicaid have certain eligibility 
   requirements.  For persons with disabilities, these 
   requirements are typically related to an inability to work, 
   which is demonstrated, in part, by earnings below a specified 
   level.  As a result, if individuals become employed and earn 
   more than the designated amount, they may eventually lose 
   public insurance and, thus, needed services.  Despite recent 
   legislation to reduce work disincentives, this link between 
   income and access to health insurance induces many with 
   disabilities to forego or limit employment in order to retain 
   coverage.  The ultimate result is limited independence and 
   self-sufficiency.

Finding 3:

   Persons with disabilities feel that their employment choices 
   are limited by the availability and adequacy of health 
   insurance, and that the spirit of the Americans with 
   Disabilities Act is diluted by the lack of adequate insurance 
   protections.
"Persons with disabilities who enter work while on public benefit 
programs cannot afford to lose their limited health coverage and 
must stay in the eligibility limits of the programs, which have 
fragmented and complicated rules."

   As for most Americans, employment is an essential prerequisite 
   to independence and self-sufficiency for persons with 
   disabilities.  Employment provides an opportunity to achieve 
   personal and professional satisfaction and financial 
   independence.  Most individuals were once able to accept a job 
   or change jobs without worrying about the availability and 
   adequacy of health insurance benefits.  Increasingly, all 
   Americans face the possibility of losing insurance when 
   seeking or changing jobs.  For no group, however, is the 
   decision about employment more linked to concerns about health 
   insurance than for persons with disabilities.

"While the Americans with Disabilities Act is opening doors, 
current health care coverage options may be blocking access to 
those same doors."
   Under ADA, persons with disabilities may enjoy guarantees 
   against discrimination not only in employment but also in 
   public services, public accommodations, and 
   telecommunications.  ADA extends the equal opportunity and 
   antidiscrimination measures established in Section 504 of the 
   Rehabilitation Act of 1973 beyond agencies or organizations 
   receiving federal funds.  However, while ADA prohibits 
   employers from discriminating against persons with 
   disabilities, it does not adequately prevent employers or 
   insurers from using practices that limit access to health 
   plans or services for persons with disabilities.  Under ADA, 
   employers and insurers may not treat individuals with 
   disabilities differently from those who do
   not have disabilities without actuarial justification.  
   Employers and insurers may still engage in restrictive 
   underwriting and coverage if they can justify their practices 
   by sound actuarial data.

   While the ability to seek and retain employment is a major 
   factor in achieving independence for many persons with 
   disabilities, it is clear that employment alone is not 
   sufficient.  Seeking and retaining employment is often driven 
   by the availability and adequacy of health care coverage.  
   Persons with disabilities who cannot obtain insurance coverage 
   from an employer, or who are offered insurance that excludes 
   needed services or certain conditions for any amount of time, 
   may find employment opportunities empty.  The discrimination 
   inherent in the private insurance system requires persons with 
   disabilities to shop around extensively for employment that 
   provides insurance to meet at least some of their health care 
   needs.  Parents and spouses of persons with disabilities 
   engage in a similar search to find insurance that will cover 
   their dependents.  Insured persons who are diagnosed with a 
   chronic condition, such as diabetes or heart disease, may find 
   themselves locked in their jobs because changing jobs might 
   render them uninsurable.










"[Every] employment decision I have ever made has been determined 
by the lack of accessible, affordable health insurance.  I have 
not been able to make one independent choice.  Any work-related 
experience I have gotten has taken place in spite of the 
restrictions of the system."
   For persons with disabilities, the alternatives to 
   employment-based insurance are primarily public programs such 
   as Medicare and Medicaid.  Persons with disabilities are 
   eligible for these programs only if their condition renders 
   them unable to work, as defined by earnings below a certain 
   amount.  Individuals thus face the choice of not working or 
   being underemployed in order to retain public insurance.  
   Highly educated and skilled persons with disabilities who are 
   unemployed or who work well below their abilities in order to 
   retain public health insurance are not uncommon.  If these 
   alternatives are unacceptable, persons with disabilities must 
   weigh the risks of working with inadequate coverage or with no 
   coverage at all.

   Without adequate insurance coverage, persons with disabilities 
   are likely to forego employment.  For many, the choice is 
   simple.  Despite the opportunities fostered by ADA, continuing 
   insurance discrimination is likely to limit the law's impact 
   on employment for persons with disabilities.  The unfortunate 
   result of an insurance system that requires individuals to 
   risk their health in order to obtain employment and to 
   sacrifice their independence to preserve their health is the 
   lost potential of millions of Americans.
"True realization of the rights now guaranteed by ADA and other 
important pieces of civil rights legislation, unfortunately, will 
continue to be limited as long as people with disabilities do not 
have access to a seamless array of life, health, personal, and 
support services."
Finding 4:

   The emphasis on acute and episodic care rather than on 
   prevention and wellness runs counter to the needs and 
   objectives of many persons with disabilities.

   The American health insurance system has not kept pace with 
   the changing nature of health and illness.  Health care is 
   largely viewed from the perspective of the medical model, 
   which focuses on cure and improving health status.  Advances 
   in medical technology have prolonged productive life for 
   millions of Americans.  However, health services have not met 
   the challenge of the growing population with chronic and 
   disabling conditions who require ongoing services to maintain 
   functioning.  The goal of health care continues to be 
   curative.  Emphasis on wellness, preventing disabilities, and 
   promoting independence is needed.

   As the population ages and more people survive with chronic 
   and disabling conditions, the focus of health care must shift 
   from curative medicine to care that maintains health status 
   and maximizes functional capacity.  This shift will require an 
   emphasis on preventive services, rehabilitation, and greater 
   integration among health care professionals.  The acute care 
   medical model emphasizes curative treatment to restore health 
   following acute illness or injury.  Financing mechanisms 
   reflect this focus.  They provide coverage for acute episodes 
   of illness, such as those requiring hospitalization, rather 
   than covering health maintenance, long-term care for chronic 
   conditions, or preventive services to avoid the onset of 
   illness or disability.

   The private health insurance industry, in general, leans 
   toward providing medical services for acute health needs, and 
   as a result insurers have an incentive to limit access to 
   insurance for individuals who present a risk of long-term or 
   high health expenses.  Medicare and Medicaid are principally 
   acute care programs.  Medicare, for example, does not cover 
   preventive or wellness care and will often not pay for ongoing 
   maintenance services. However, persons with disabilities who 
   rely on private or public insurance often require long-term 
   services, such as physical therapy, to maintain an advanced 
   level of functioning and live independently in the community.





"Essentially, we [persons with disabilities] seek programs of 
health insurance that liberate while avoiding the oppression of 
medical management.  We wish to be able to access medical 
expertise and comanage our care without surrendering our 
independence."






"Unlike the person without a disability who has an acute health 
need such as the occasional flu or a broken leg, a person with a 
disability knows that his ongoing health care needs fundamentally 
will affect his quality of life."
   The emphasis on curing and improving health status often 
   limits access to services for persons with disabilities 
   because their needs do not meet "medical necessity" 
   provisions.  Certain services, such as personal assistance, 
   may be critical to sustaining an individual's level of 
   functioning, but if no improvement in functional capacity 
   results from this service, insurance coverage may be limited.  
   The traditional medical model also represents a narrow view of 
   health care, failing to consider the needs of persons with new 
   morbidities, such as substance abuse, environmental illness, 
   and traumatic injury resulting from violence.  With the 
   emergence of these new
   conditions, the availability of ongoing and preventive 
   services will become even more important.
"The orientation of the current health care system for people 
with disabilities is one which fosters dependency, work 
disincentives, and oppression."
   The underlying paradox is that the success of the medical 
   model has permitted many more individuals to survive beyond 
   the acute stages of illness or injury; persons with 
   disabilities and chronic conditions have the potential to live 
   independently if they can obtain both traditional medical and 
   health-related services consistently over time.  In addition, 
   the onset of both initial and secondary disabilities and a 
   range of new morbidities could be deterred or avoided if 
   preventive services were promoted and available on a regular 
   basis.  However, without the availability of nonacute, 
   preventive, maintenance, and rehabilitation services, some 
   persons with disabilities may face deteriorating health and 
   functioning that will require repeated episodic reliance on 
   the acute care system.

Finding 5:

   The range of services covered by insurance is typically 
   limited and often restricts or excludes coverage of many 
   services that are important for persons with disabilities to 
   achieve independence.

   The major difficulties of financing health care for most 
   persons with disabilities arise not from lack of insurance but 
   from lack of coverage for certain medical and health-related 
   services that are required for independent living.  For 
   example, sign language interpreters, assistive technology, and 
   certain therapies are likely to be omitted from insurance 
   plans or covered only if certain conditions are met, such as 
   "medical necessity" criteria or service provision by specified 
   providers.  The range of covered services and the inclusion of 
   health-related services are key determinants of the adequacy 
   of health insurance for persons with disabilities.

   Few studies have attempted to document the extent to which 
   health-related services are covered under private health 
   insurance.  Some efforts have been made to determine whether 
   certain services are offered under employer benefit plans.  
   The results of these surveys seem to indicate that the 
   majority of employers offer coverage for health-related 
   services, such as medical equipment and supplies, but exclude 
   coverage for many other types of health-related services, such 
   as rehabilitation or assistive devices.  However, the limits 
   on these services are not well understood or documented, and 
   as health care costs have continued to escalate, employers are 
   further reducing the scope of services covered under their 
   insurance plans.
"I have been employed full time most of my adult life and have 
had access to group health insurance.  I do, however, have 
ongoing health-related costs that are not covered by insurance, 
such as hearing aid batteries, aspirin to relieve my arthritis, 
and other costs that are directly related to my disabilities."

   A trend in insurance designed to improve the affordability of 
   private coverage is the emergence of "bare bones" benefits, 
   which include
   coverage for limited services.  This trend essentially runs 
   counter to the pressing needs of persons with disabilities 
   because services they are likely to require, such as 
   prescription drugs, mental health care, and physician 
   services, are restricted or eliminated from coverage 
   altogether.

   Medicaid and Medicare appear to be more comprehensive in 
   covering health-related services because of their target 
   populations, but many gaps remain.  These public programs, 
   like most private plans, were designed to cover acute care 
   services.  The services many persons with disabilities require 
   in order to live independently, such as personal assistance 
   and assistive technology, are covered only to a limited extent 
   by Medicaid and to an even lesser extent by Medicare.


   Medicaid potentially offers the most comprehensive set of 
   benefits, covering many services outside the traditional acute 
   care model.  However, states are under no obligation to offer 
   any of the health-related services considered optional under 
   federal law, except to children under the Early and Periodic 
   Screening, Diagnosis, and Treatment Program (EPSDT).  These 
   optional services include physical therapy; occupational 
   therapy; speech, hearing, and language disorder services; 
   personal assistant services; prosthetic devices; 
   rehabilitation; and transportation.  Furthermore, states are 
   permitted to determine the scope of services available and to 
   restrict the amount covered.  As a result, a person with a 
   disability who requires ongoing physical therapy in order to 
   maintain mobility and health may only receive therapy as long 
   as the provider can document an improvement in health.  
   Ongoing or chronic care services are typically not covered.

   The Medicare program has not kept pace with the changing 
   nature of health care or the needs of its beneficiaries.  
   Persons with disabilities receiving Medicare cannot obtain 
   outpatient prescription drugs and needed assistive technology, 
   such as sensory aids, under the program.  Medicare will, 
   however, cover surgical treatment for a cochlear implant even 
   though a hearing aid may have been sufficient.  Medicare 
   restricts coverage of wheelchairs for home use and does not 
   cover handrails or grab bars, which severely limits an 
   individual's independence and ability to participate in the 
   community.  Medicare's inadequacy and inappropriateness for 
   meeting the needs of persons with disabilities means that many 
   are thwarted in their efforts to achieve self-sufficiency.

   Persons with disabilities report that limits on health-related 
   services often prevent them from completing tasks of daily 
   living, participating actively in their community, or 
   maintaining
   employment, and are thus a major obstacle to independence.  
   When needed services are not covered, many persons with 
   disabilities may pay for them out-of-pocket.  Others may 
   simply do without.  As a result, the health and functional 
   capacity of these persons may erode.


The services many persons with disabilities require in order to 
live independently, such as personal assistance and assistive 
technology, are covered only to a limited extent by Medicaid and 
to an even lesser extent by Medicare.

Finding 6:

   International policies toward persons with disabilities are 
   geared toward returning individuals to work through a 
   combination of health insurance and complementary programs of 
   social assistance.

   International comparisons offer a different perspective on 
   health insurance and disability.  An assessment of the health 
   policies in Canada, Germany, and the Netherlands revealed that 
   these countries recognize the different medical and 
   health-related service needs of various populations, and that 
   persons with disabilities may require several services to live 
   independently that are not needed by the majority of the 
   population.  In order to meet these needs, each of the three 
   countries has integrated more traditional medical benefits 
   with social assistance programs.  The coordination of these 
   systems ensures a continuum of health and social services for 
   persons with disabilities and other specific populations, and 
   also emphasizes the link between health and employment as a 
   means of promoting healthy and productive citizens.



International comparisons show broad coverage for persons with 
disabilities in several different countries.

   All three of the countries operate federal or federal-state 
   assistance programs distinct from the health insurance system.  
   These programs provide services not covered under the general 
   health care system to individuals with disabilities and other 
   persons with special needs.  The rationale for these separate 
   systems is that the health benefits available to the general 
   population needn't be as comprehensive as the benefits for 
   persons with special needs.  As the United States develops its 
   own approach to health insurance, it must determine whether to 
   make certain services available at all and whether to include 
   these services as part of the health insurance system or as a 
   distinct but complementary system.  This decision must be made 
   within the context of an aging population in which the number 
   of those with chronic and disabling conditions is increasing.

   International comparisons illustrate an aggressive program of 
   benefits designed to return persons with disabilities to work.  
   The Vocational Rehabilitation for Disabled Persons Act in 
   Canada, the German 1974 Rehabilitation Act, and the General 
   Disability Benefits Act in the Netherlands all cover a range 
   of services, including
   rehabilitation and assistive devices for any person with a 
   disability who requires these services in order to work, 
   regardless of income status.  Public social and health 
   assistance programs in the United States, in contrast, are 
   based on income standards that limit an individual's ability 
   to work and do not provide services oriented to returning 
   individuals to work.
In several countries, health care and other social programs are 
coordinated to provide services oriented to
returning persons to work.

   In the countries studied and in others with universal health 
   insurance, many of the access barriers to health insurance and 
   services are alleviated by guaranteeing that all individuals 
   have access to a basic set of health benefits, regardless of 
   health status and ability to pay.  None of the health 
   insurance systems in these countries, however, is adequate to 
   fully meet the needs of persons with disabilities.  These 
   needs are met by complementary social assistance programs that 
   appear to fill some of the gaps in coverage and facilitate 
   employment.  While these systems inevitably have some 
   shortcomings, especially related to the adequacy of basic 
   coverage and access to long-term care, they are, nevertheless, 
   important models for consideration.


Finding 7:

   It is difficult to define precisely the nature and extent of 
   the barriers to health insurance faced by persons with 
   disabilities because estimates of the number of persons with 
   disabilities vary, and this population is so diverse.

   Persons with disabilities are a large and diverse population.  
   Children with cerebral palsy, a hearing-impaired woman, a 
   mentally retarded young adult, a person with epilepsy, a blind 
   man, a mentally ill child, and a young woman who uses a 
   wheelchair because of an automobile injury are all persons 
   with disabilities.  Estimates of their number range from 23 
   million to 43 million, with 35 million being the most commonly 
   used figure.





The estimates of this population vary greatly because there is no 
common definition of disability.
   The estimates vary because there is no common definition of 
   disability.  Public programs, civil rights legislation, and 
   household surveys all categorize disability differently.  The 
   lack of a common definition prevents researchers and 
   policymakers from determining the size and scope of the 
   disability constituency, from identifying their needs, and 
   from assessing the extent to which existing programs meet 
   those needs.

   The most recent and sweeping definition of disability is that 
   of the Americans with Disabilities Act.  Under ADA, 
   individuals with a disability are defined as (a) having a 
   physical or mental impairment
   that substantially limits that person in one or more major 
   life activity; (b) having a record of such a physical or 
   mental impairment; or (c) regarded as having such a physical 
   or mental impairment.  An estimated 43 million persons are 
   thought to meet this definition and thus are protected by ADA 
   provisions.
The most recent and sweeping definition of disability is that of 
the
Americans with Disabilities Act, which focuses on substantial 
limitations in one or more major life activity.
   Public programs, such as the Social Security Disability 
   Insurance Program (SSDI) and the Supplemental Security Income 
   Program (SSI), employ narrower definitions of disability.  
   These definitions are designed to limit program enrollment and 
   thus program outlays.  The federal SSDI and SSI definitions 
   focus on a person's inability to maintain an income.  They do 
   not regard impairments that may affect an individual's ability 
   to conduct other major life activities or to function in the 
   community.  Many fewer people are identified as having a 
   disability under these definitions than under ADA.

   These differences in definition make it difficult to derive a 
   reliable estimate of the population with disabilities that is 
   uninsured or underinsured and the type of barriers to health 
   care they face.  For example, are barriers to adequate health 
   insurance and health-related services greater for certain age 
   groups or for certain types of disabilities?  What are the 
   employment characteristics of persons with disabilities (e.g., 
   full-time, part-time, firm size, type of industry), and how do 
   these employment characteristics relate to access to adequate 
   private health insurance?  Answers to these and other 
   questions would provide much needed information about the 
   relationship between disability and access to adequate health 
   insurance.

   Understanding the health care needs of persons with 
   disabilities and the barriers in the current system to meeting 
   those needs will enable policymakers to fashion solutions that 
   overcome those barriers. In addition, knowing how many persons 
   with disabilities remain unemployed or underemployed because 
   of concerns about health insurance could lead to programs that 
   address these problems as well.  Without a common definition 
   of disability, however, it is unlikely that public programs 
   can be accurately assessed in terms of the extent to which 
   they provide coverage to those who might benefit and meet the 
   needs of those with disabilities.  Thus, making appropriate 
   recommendations for change becomes improbable.

Finding 8:

   The experience of persons with disabilities provides important 
   lessons about the problems faced by millions of other 
   Americans.

   Access to health insurance for individuals and families has 
   become a primary concern for most Americans.  For the 
   population with disabilities and for a growing number of 
   others, the problem with the health insurance system is one of 
   adequacy rather than lack of insurance.  Neither the current 
   system nor many of the current proposals for change explicitly 
   address this issue.  While efforts targeted at the uninsured 
   may improve access to care for the uninsured with 
   disabilities, these efforts may not result in adequate 
   coverage for the newly insured or the currently insured 
   population with disabilities.  Without efforts to confront 
   insurance discrimination and adequacy, it is unlikely that the 
   current dissatisfaction with the system will abate.
"...the health care crisis in this country grows worse each day.  
I have never envisioned myself as a person who could `fall 
through the
cracks of the system'--if you were to see my resum‚, you would 
probably agree--and yet that appears to be happening."
   As the debate moves forward, persons with disabilities, 
   advocates, and others have called attention to the problems 
   faced by the population with disabilities.  These difficulties 
   are faced not only by persons with disabilities, but also by 
   others who may find themselves underinsured because of 
   inadequate health coverage and a lack of available and 
   appropriate services.  The perspective, experience, and voice 
   of the population with disabilities largely underscores the 
   experience of the nation as a whole and provides significant 
   lessons for those effecting change.
By adequately addressing the problem of access to health 
insurance for people with disabilities, we are likely to address 
the problem for all Americans.








    RECOMMENDATIONS OF THE NATIONAL COUNCIL

   The National Council on Disability believes that the current 
health insurance system does not meet the needs of persons with 
disabilities.  Major reform of both the public and private 
insurance systems is necessary to eliminate access barriers.

   The health insurance debate must be broadened beyond concerns 
for financing the expansion of coverage to a discussion of how 
health care should be defined and delivered at a time of emerging 
new morbidities (e.g., substance abuse, environmental illness, 
etc.), an aging population, and medical technology that enables 
many with chronic and disabling conditions to live productive and 
independent lives.  The vision of the Council is to begin 
defining the health care system in terms of promoting and 
maintaining the health and optimal functioning of all Americans.
The vision of the National Council is that we begin to define our 
health care system in terms of promoting and maintaining the 
health and optimal functioning of all Americans.

   The Council hopes that health care reform will adequately and 
appropriately address the needs of persons with disabilities, and 
its first recommendation reflects that objective.  However, in 
the event that this does not occur, the Council strongly supports 
the passage and implementation of a series of incremental 
measures that will have a timely and significant impact on 
improving access, as reflected in several subsequent 
recommendations.  These initiatives promote the objectives of the 
disability community and the Americans with Disabilities Act, 
helping individuals achieve equal opportunity and independence.  
Without these proposed changes, the human and economic potential 
of millions of Americans may be wasted.

   The recommendations developed by the Council are designed to 
respond to the study findings and achieve the following five 
objectives:

   ù Expand access to public and private health insurance.

   ù Reduce barriers to employment.

   ù Improve adequacy of health services coverage.

   ù Develop an integrated and coordinated delivery system.

   ù Establish a research agenda of disability and health issues.


A. Expand Access to Health Insurance

   Access to health insurance is clearly a problem for the 3 
million persons with disabilities who are currently uninsured.  
Many others with disabilities have been able to obtain health 
insurance but have had to
overcome numerous obstacles in the process.  Still others have 
had to remain on public insurance because private insurance was 
unavailable.  Several changes in both the private and public 
insurance systems are needed to improve access to health 
insurance for persons with disabilities.

1. Comprehensive Health Care Reform

   The National Council believes that the health care system is 
in need of fundamental and comprehensive reform.  There are many 
ways in which such reform can be structured and achieved.  The 
Council does not take a position on any specific health care 
reform plan at this time.  However, the Council believes strongly 
that any plan adopted must be designed from the outset to meet 
the needs of people with disabilities.  It therefore makes the 
following overarching recommendation:


Changes in both the private and public insurance systems are
needed to improve access to insurance for persons with 
disabilities.

Recommendation 1:

   Congress and the Administration should ensure that any health 
   care reform plan adequately meets the needs of persons with 
   disabilities, including full portability of coverage and a 
   broad scope of benefits.

   It is essential that any health care reform proposal be 
   designed from the outset to meet the needs of persons with 
   disabilities.  In the past, programs such as Medicare and 
   Medicaid considered disability largely as an afterthought.  
   Consequently, these programs have a strong bias toward acute 
   care rather than the chronic care and long-term services, 
   including personal assistance services and assistive 
   technology, needed by many people with disabilities.  This 
   bias is difficult to correct if it is initially built into a 
   system.  It is, therefore, very important that people with 
   disabilities and their representatives have substantial input 
   in ensuring that health care reform proposals meet their needs 
   and incorporate a disability perspective.  The National 
   Council generally endorses the five principles for health care 
   reform, including the broad benefit package and concept of 
   full portability of coverage, adopted by the Consortium for 
   Citizens with Disabilities and the statement of the National 
   Study Group on Health Care System Reform and Persons with 
   Disabilities (see appendix to this report).













It is essential that any health care reform proposal be designed 
from the outset to meet the needs of people with disabilities.
2. Private Insurance Market Reforms

   Several market reforms would improve the availability and 
affordability of private health insurance for persons with 
disabilities.  The goals of these reforms are (1) to ensure that 
all groups have access to health insurance and that no groups or 
individuals within these groups can
be denied coverage, (2) to prohibit cancellation of coverage 
based on high claims cost, and (3) to establish greater premium 
stability in the small-group insurance market.  The combination 
of these reforms would help eliminate the discrimination that now 
limits insurance options for persons with disabilities.  To be 
effective, the six recommendations related to private insurance 
should be enacted simultaneously.  The Senate Finance Committee, 
Senate Labor and Human Resources Committee, and House Committee 
on Ways and Means have jurisdiction in this area.  The six 
recommendations follow:


Recommendation 2:

   Congress should enact legislation mandating community rating 
   for all health insurance plans as a means of spreading the 
   health insurance risk and reducing the cost of coverage for 
   persons with disabilities.

   By spreading the health insurance risk across a large pool, 
   community rating can help provide affordable coverage to the 
   large number of employer groups and individuals who are 
   currently uninsured or who face high insurance costs because 
   of their health status.  This benefit is accomplished by 
   pooling many groups and setting an average premium rate based 
   on their expected average utilization.  The disadvantage of 
   community rating is that it effectively raises the average 
   premium for most people since high-risk persons would now be 
   pooled with those at lower risk.  Community rating would make 
   premiums more affordable for persons with disabilities who 
   often face higher-than-average insurance premiums or who are 
   excluded from the private insurance market because insurers 
   expect high health expenses.
By mandating community rating, health insurance can become more 
affordable to persons with disabilities.

   As a business practice, community rating is not new; at one 
   time, it was the norm for many health insurers.  Community 
   rating has given way to experience rating because the latter 
   permits insurers to better predict risk and set premiums 
   accordingly.  The ultimate effect of experience rating has 
   been serious insurance market fragmentation and 
   self-selection, which has essentially excluded potentially 
   high-risk individuals and groups from access to affordable 
   insurance.  In light of this situation, there is renewed 
   interest in community rating at both the national and state 
   level, and to date three states have enacted community rating 
   as a statewide health insurance policy for small groups and 
   individuals.  The Employee Retirement Income Security Act 
   (ERISA) of 1974 permits self-insured firms to be excluded from 
   state mandates. Thus, efforts to move toward community rating 
   have been limited to the small-group and individual markets.  
   To obtain the greatest benefit from
   community rating, all firms should be included and ERISA 
   modified.  The Council urges Congress to follow suit by 
   mandating community rating and changing ERISA to permit the 
   inclusion of all firms in the community pool.





To obtain the greatest benefit from community rating, the 
Employment Retirement Income Security Act of 1974 should be 
amended to require compliance by self-insured organizations.
Recommendation 3:

   Congress should enact legislation mandating the elimination of 
   preexisting-condition exclusions and waiting periods to 
   increase the availability of private insurance coverage for 
   persons with disabilities.


   These insurance practices are major factors in the exclusion 
   of persons with disabilities from private insurance and in the 
   prevalence of insurance plans that many in the disability 
   community find inadequate.

   By eliminating these restrictive provisions, employers who 
   offer insurance would have to make the same coverage available 
   to all eligible employees, regardless of their health status.  
   Preexisting-condition exclusions and waiting periods should be 
   prohibited in conjunction with the implementation of community 
   rating so that health insurance costs do not increase to the 
   point of unaffordability.  Together, these actions can improve 
   both access to and affordability of private insurance for 
   persons with disabilities.
The elimination of preexisting-condition exclusions would expand 
access to private insurance for persons with disabilities.

Recommendation 4:

   Congress should halt discriminatory insurance practices by 
   enacting legislation prohibiting medical underwriting that 
   excludes individuals from groups on the basis of their health 
   status.

   Like preexisting-condition exclusions and waiting periods, 
   medical underwriting restricts access to health insurance on 
   the basis of health status.  Insurers often will not write 
   polices for small groups without medical underwriting in order 
   to better predict and control the health care costs for the 
   group.  As a result, individuals with disabilities may find 
   the availability of insurance--and therefore employment 
   opportunities--with small employers limited because insurance 
   is a key factor in their employment decisions.  Prohibiting 
   the use of medical underwriting that excludes individuals from 
   a group does not address the adequacy of available insurance.  
   It does, however, help improve insurance availability by 
   further limiting the practice of excluding on the basis of 
   health status.
Prohibiting medical underwriting would discourage discriminatory 
insurance practices affecting persons with disabilities.
Recommendation 5:

   Congress should enact legislation mandating that insurance be 
   guaranteed for small groups and individuals.  Such a law would 
   prohibit insurers from dropping persons from coverage because 
   of deteriorating health and would promote portability of 
   coverage.


   Insurers should be required to have open enrollment for both 
   small groups (i.e., employers with fewer than 25 employees) 
   and individuals, and to provide coverage to all those who 
   apply regardless of health risk.  In addition, neither 
   insurers nor employers should be permitted to exclude 
   individuals from group coverage, even if they present high 
   medical risks.  Once insured, neither an individual nor a 
   group should be denied continued coverage because of 
   deteriorating health.  These provisions will help ensure that 
   persons with disabilities have continuity of coverage and do 
   not have to fear loss of insurance when considering employment 
   opportunities.
Guaranteed insurance availability and renewability reduce the 
fear of accepting or changing jobs.

Recommendation 6:

   Congress should enact legislation that regulates annual 
   insurance premium increases in order to stabilize health 
   insurance costs.

   It is not unusual for small employers to face three-fold 
   increases in annual insurance premiums.  These increases are 
   the result of an insurance practice known as "durational 
   rating" by which insurers raise premiums over time as 
   preexisting-condition exclusions that initially generated 
   savings expire.  Premiums can be expected to rise sharply at 
   each subsequent renewal when preexisting-condition exclusions 
   lapse and also as the benefits of medical underwriting erode 
   over time.  In order to stabilize health insurance costs, 
   insurers should be required to limit the rate of annual 
   premium increases relative to other groups insured by the same 
   carrier.  These limits would typically guarantee that a group 
   pay no more for basic coverage than a percentage of the 
   average cost of similar groups (i.e., similar demographics, 
   geography, benefit design, and industry).
Regulations on the manner of annual premium increases may enable 
more small employers to offer health insurance.
Recommendation 7:

   Congress should amend the Internal Revenue Code to permit 
   greater deductions for health care, personal assistance, and 
   assistive technology expenses for persons with disabilities.

   a. Congress should amend the Internal Revenue Code to permit 
      self-employed persons with disabilities to deduct the full 
      cost of purchasing health insurance from their income 
      taxes.

   Even for persons without disabilities, nongroup health 
   insurance tends to be very expensive and often limited in the 
   scope of covered services.  While employed persons who work 
   for a business benefit from spreading the risk across the 
   employer's group, self-employed individuals do not have such 
   an advantage.  In addition, both employers who provide health 
   insurance and employees who contribute to the cost of that 
   insurance are permitted to deduct the full cost of their 
   contribution from their gross earnings when determining their 
   taxable income.  Self-employed persons are permitted to deduct 
   only 25 percent of the cost of insurance.  For persons with 
   disabilities who typically face higher individual health 
   insurance costs, this 25 percent deduction provides little 
   relief.  Amending the tax code to permit self-employed persons 
   with disabilities to deduct 100 percent of their health 
   insurance costs would promote more self-employment 
   opportunities for this population.  It also may make resources 
   available to pay out-of-pocket for services that insurance 
   does not cover.

   b. Congress should amend the Internal Revenue Code to permit 
      persons with disabilities to deduct 100 percent of their 
      health-related expenses from their income tax liability.

   Persons with disabilities typically face higher medical 
   expenses because of higher insurance premiums, and a greater 
   need for medical and health-related services that may not be 
   covered under private or public insurance.  Currently, only 
   blind persons may deduct the full cost of expenses related to 
   their disability from their income tax liability; others may 
   deduct only the amount of medical expenses that exceeds 7 
   percent of their adjusted gross income.  Amending the tax code 
   to allow all persons with disabilities to deduct the full cost 
   of medically related expenses, including the cost of personal 
   assistance services and assistive technology, would help many 
   of them afford services related to their disabilities because 
   these expenses would be offset by a reduction in taxes.  
   Obtaining these services rather than forgoing or postponing 
   them because of the out-of-pocket expense may help prevent the 
   future onset of secondary disability and help an individual 
   maintain an achieved level of functioning.  If this 
   recommendation were enacted, it would not be necessary to 
   increase the tax deduction for self-employed persons with 
   disabilities since they would be encompassed in this proposal.

3. Public Health Insurance Reform

   The large numbers of persons with disabilities receiving 
Medicare and Medicaid suggest that reforms within the public 
insurance system could have a significant effect on access to 
needed services and could encourage independence.  Jurisdiction 
for changes in public health insurance lies with the House 
Committee on Ways and Means, the House Subcommittee on Health and 
the Environment (Committee on Energy and Commerce), and the 
Senate Finance Committee.

Recommendation 8:

   Congress should amend the Social Security Act to eliminate the 
   24-month waiting period for Medicare benefits to ensure 
   continuity of coverage for qualified persons with 
   disabilities.



Amending the tax code to allow all persons with disabilities to 
deduct the full cost of medically related expenses, including the 
cost of personal assistance services and assistive technology, 
would help many of them afford services related to their 
disabilities.
   The 24-month waiting period for Medicare following the receipt 
   of SSDI benefits is a particular problem for persons with 
   disabilities who risk deteriorating health during that period 
   in the absence of other coverage.  Despite the extension of 
   the Consolidated Omnibus Budget Reconciliation Act's (COBRA) 
   continuation coverage provision for 29 months for 
   employment-based insurance, more than one-quarter of SSDI 
   recipients are uninsured during the last six months of the 
   waiting period.  This situation is due in part to the limited 
   impact of the COBRA extension because the premiums for 
   maintaining employment-based coverage as an individual are 
   very high.  Eliminating the waiting period for Medicare would 
   allow persons with disabilities who have ongoing health 
   service needs to obtain those services in a timely fashion and 
   would preempt potential secondary conditions that might 
   otherwise occur.
Eliminating the waiting period for Medicare would improve 
continuity of coverage.
Recommendation 9:

   Congress should mandate a Medicaid buy-in for persons with 
   disabilities in order to reduce employment disincentives.

   States currently have the option of implementing Medicaid 
   buy-in programs under which persons can obtain Medicaid 
   coverage by paying a premium that may be subsidized by the 
   state.  Requiring states to implement the buy-in would improve 
   the availability of this source of insurance for the many 
   persons with disabilities who are uninsured because their 
   incomes are too high to meet Medicaid eligibility, but who 
   cannot afford private insurance.  A buy-in program available 
   on a sliding-scale premium regardless of income, such as is 
   offered in Massachusetts, would allow persons with 
   disabilities who are currently uninsured to obtain coverage.



A Medicaid buy-in would reduce employment disincentives for 
persons with disabilities.
   The Medicaid buy-in can have other important implications.  
   Persons with disabilities who are currently receiving Medicaid 
   report that they often turn down employment because the 
   insurance
   coverage, if available, would be insufficient to meet their 
   needs as well as Medicaid does.  Under a Medicaid buy-in, many 
   persons with disabilities would likely seek and obtain 
   employment not otherwise accessible to them because of 
   unavailable or inadequate insurance.  The buy-in could also 
   permit employers to pay the premium on behalf of eligible 
   employees.  The advantages of such provisions include 
   potential savings to the SSI program as people achieve 
   economic self-sufficiency, in addition to improved 
   self-esteem, mental and physical health, and independence.

B. Reduce Barriers to Employment

   While ADA makes substantial headway in expanding employment 
opportunities to persons with disabilities, additional 
initiatives are necessary in the health insurance arena to ensure 
that employment opportunities are indeed viable.  The most 
serious barriers to employment exist in the public health 
insurance programs as work disincentives that force individuals 
to choose between access to health services and employment.  
Recommendation 10 represents an important reform that moves 
toward alleviating barriers to employment faced by persons with 
disabilities.  Jurisdiction for this recommendation is within the 
Senate Finance Committee and the House Committee on Ways and 
Means.




The Medicaid buy-in could serve as an important incentive to work 
for people with disabilities.

Recommendation 10:

   Congress should expand Section 1619 work incentive provisions 
   of the Social Security Act to Medicare.  This would reduce 
   employment disincentives for Medicare beneficiaries.

   Like Medicaid, Medicare limits earning levels for its 
   beneficiaries with disabilities.  Permitting earnings above 
   the substantial gainful activity level with an offset in SSDI 
   cash benefits while allowing persons with disabilities to 
   maintain Medicare coverage could help reduce SSDI expenditures 
   and encourage economic self-sufficiency.

Extending Section 1619 provisions to Medicare would reduce 
employment disincentives for Medicare beneficiaries.
C. Improve Adequacy of Health Services Coverage

   The major health care issue for persons with disabilities is 
access to adequate health insurance coverage.  Improving the 
availability of health insurance will give some persons with 
disabilities coverage they would not have otherwise.  However, 
the extent of coverage, in terms of benefits and cost sharing, 
may not be sufficient to meet their needs and does little to 
foster self-sufficiency.  The Council believes that systematic 
changes in the orientation of health services coverage are 
necessary to ensure that available benefits meet the needs of 
persons with disabilities and encourage their independence.  
Reforms in the scope of health services
coverage will influence and support needed changes in the 
delivery system, particularly the move from an acute care medical 
model toward ongoing services aimed at keeping citizens healthy 
and productive.  The Senate Finance Committee, the House 
Committee on Ways and Means, the House Subcommittee on Health and 
the Environment, and the House and Senate Appropriations 
Committees have jurisdiction over the recommendations that 
follow.





Systematic changes in the orientation of health services coverage 
are necessary to meet the needs of people with disabilities
and encourage their independence.
Recommendation 11:

   Congress should revise the Medicare benefit structure to 
   better meet the needs of beneficiaries with disabilities.

   The Medicare program provides health insurance to over 3 
   million persons with disabilities.  The original intent of the 
   program was to finance health care for the elderly, but the 
   1972 amendments to the Social Security Act revised Medicare's 
   scope to include persons with disabilities.  Yet Medicare has 
   not effectively responded to the needs of this broader 
   constituency.  Medicare program benefits remain largely 
   oriented to the needs of the elderly.  In particular, Medicare 
   does not cover outpatient prescription drugs and has very 
   restricted coverage for durable medical equipment.  
   Wheelchairs, for example, are available only for use in the 
   home.  For a working-age person with a disability who needs a 
   wheelchair, this provision impedes independence and 
   participation in the community.


Medicare benefits must be reassessed to better meet the needs of 
persons with disabilities.
   In order to better meet the needs of beneficiaries with 
   disabilities, the Medicare benefit structure should be 
   reassessed from the perspective of those beneficiaries and 
   subsequently amended.  The review should examine the extent to 
   which Medicare recipients require services not currently 
   covered under the program, such as communication devices, or 
   covered with restrictions, such as durable medical equipment.  
   Consideration should be given to services that, if provided in 
   a timely and appropriate manner or on an ongoing basis, could 
   limit the need for repeated hospitalizations or 
   institutionalization.  If the revisions focus on fostering 
   independence and health, the entire Medicare population will 
   benefit from the change.

Recommendation 12:

   Congress should mandate the expansion of home- and 
   community-based service options to reduce the unnecessary 
   institutionalization of persons with disabilities in public 
   insurance programs.

   Medicaid has an inherent institutional bias that prevents some 
   persons with disabilities from obtaining coverage unless they 
   are
   institutionalized and that disallows some services unless they 
   are provided in an institutional setting.  Home- and 
   community-based services allow individuals to be served in the 
   community rather than in institutions.  Over the past few 
   years, the opportunity for states to provide home- and 
   community-based services under Medicaid has expanded 
   considerably.  Most states have taken advantage of Medicaid 
   waiver programs to provide home- and community-based services, 
   and in 1990, these services became optional under Medicaid.  
   However, the current options are largely restricted by 
   enrollment ceilings, funding caps, and the requirement that 
   states demonstrate the cost-effectiveness of providing these 
   services in lieu of institutionalization.  As a result, the 
   availability of home- and community-based services is limited 
   even for those individuals who would likely benefit from them.  
   If coverage of home- and community-based services were 
   mandated and some restrictions on reimbursement for these 
   services were relaxed, many more people could benefit from 
   receiving them in a noninstitutional setting.






Home- and community-based services allow individuals to be served 
in the community rather than in institutions, and should be 
available in all states.

Recommendation 13:

   Congress should expand access to personal assistance services 
   and assistive devices either by earmarking an annual 
   appropriation to the Social Services Block Grant (Title XX) or 
   by mandating Medicaid coverage.  In addition, states should be 
   permitted to introduce a buy-in component to programs that 
   provide these services so all persons with disabilities may 
   have access to them regardless of ability to pay.


   Personal assistance services, including personal attendants, 
   interpreters, and readers, are currently subject to many 
   limitations--if covered at all--under public insurance.  These 
   services are rarely covered by private plans.  Coverage of 
   assistive technology, such as communication devices and 
   motorized or customized wheelchairs, is also typically 
   restricted.  Persons with disabilities report that this lack 
   of coverage is a major obstacle to their independence.  
   Without personal assistance and assistive devices, many 
   persons may need institutionalization--often their only 
   alternative to obtaining comparable services necessary for 
   maintaining their health.
Broad availability of personal assistance services and assistive 
technology will lead to greater independence and productivity for 
persons with disabilities.
   Two programs may be used to expand access to personal 
   assistance services and assistive devices:  Medicaid and Title 
   XX, the Social Services Block Grant.  Covering some personal 
   assistance services is currently optional under Medicaid; 
   about 25 states have adopted this option.  But the Medicaid 
   benefit is limited in scope and does not adequately meet the 
   needs of persons requiring personal assistance.  States can 
   specify the scope and duration of the benefit;
   thus, the comprehensiveness of the benefit depends on where a 
   person lives.  Also, personal assistance services are subject 
   to medical necessity criteria, which limits the benefit.  
   Moreover, these services are limited to those required inside 
   the home.  Medicaid does not pay for personal assistance 
   services outside the home.

   If Medicaid is to meet the personal assistance needs of 
   persons with disabilities, the benefit must be broadened.  The 
   advantage of using Medicaid is that it currently covers some 
   personal assistance services.  However, broadening or 
   mandating Medicaid coverage of personal assistance would be 
   politically difficult because states have opposed additional 
   federal mandates.

   A second program option is the Social Services Block Grant, or 
   Title XX. Several of the goals of these grants--to furnish 
   services to promote self-sufficiency and reduce dependency, 
   and to prevent and reduce inappropriate institutional 
   care--could be met more fully if states were allotted a sum of 
   money specifically for personal assistance services and 
   assistive technology.  States currently use Title XX dollars 
   to provide a range of special services for persons with 
   disabilities; however, states allocate Title XX dollars to 
   these services at their discretion because the block grant is 
   designed to address a variety of needs.  By earmarking monies 
   for personal assistance and technology, states can establish 
   programs to provide these services and be assured of an annual 
   budget.  In addition, because states can adopt a buy-in to 
   these programs, persons with disabilities who have inadequate 
   insurance coverage may obtain needed benefits from the Title 
   XX program on an income-based sliding scale.  This provision 
   promises the program an additional source of revenue.  The 
   Social Services Block Grant offers greater flexibility for 
   personal assistance than Medicaid.

   Expanding personal assistance services could have far-reaching 
   benefits.  The availability of personal assistance and 
   assistive technology will reduce hospitalization and 
   institutionalization for many persons with disabilities.  This 
   outcome, in turn, reduces the burden on Medicaid--fewer 
   Medicaid recipients would be institutionalized; others might 
   avoid hospital institutional care that would result in their 
   depleting their resources to become eligible for Medicaid.  
   The burnout experienced by family members who act as personal 
   assistants for loved ones with disabilities could be 
   alleviated because these programs could offer alternative 
   support.  Finally, but perhaps most important, many persons 
   with disabilities would be able to seek and maintain 
   employment and live more independent and productive lives 
   because these services would help them attain 
   self-sufficiency.









The availability of personal assistance and assistive technology 
will reduce hospitalization and institutionalization for many 
persons with disabilities.
D. Develop an Integrated and Coordinated Delivery
System

   The current medical delivery system has been shaped by a 
financing structure and financial incentives that value the 
process of restoring health more than the process of maintaining 
it.  For persons with disabilities, this objective means that 
their ongoing, long-term needs are neglected, and they may be 
forced to sacrifice health and independence in order to access 
the system.  Some services may be covered if rendered by 
specified providers or in particular settings, but it may be 
difficult to find such a provider who is sensitive to the 
concerns of persons with disabilities.  As a result of this 
system, persons with disabilities must negotiate a maze of 
bureaucratic, structural, architectural, and attitudinal barriers 
in order to obtain the array of services they require.  Some 
reorganization of the delivery system is necessary to ensure that 
persons with disabilities have access to the services they need.
Reorganization of the
delivery system is needed to promote health status goals.

Persons with disabilities currently must negotiate a maze of 
bureaucratic, structural, architectural, and attitudinal barriers 
in order to obtain the array of services they require.
   By reorienting the delivery system to consider the overall 
health of the community in the long run, the health care needs of 
persons with disabilities and the community-at-large could be met 
more appropriately.  Providers would be encouraged to coordinate 
care for patients on an individualized basis, ensuring that a 
continuum of needed services is available to keep the individual 
healthy and productive.  People would be empowered to participate 
in decisions about the types of services or providers that best 
meet their needs and expectations.  While this thrust toward 
promoting health and independence reflects the goals of those 
with disabilities, it also benefits the general population by 
creating a healthy community for all.  The House Committee on 
Ways and Means, the Senate Labor and Human Resources Committee, 
the House Committee on Education and Labor, and the House and 
Senate Appropriations Committees have jurisdiction in the areas 
of these recommendations.

Recommendation 14:

   Congress should establish an Office of the Assistant Secretary 
   for Disability at the Department of Health and Human Services 
   to ensure a disability perspective in all future health care 
   policy.

   Currently, there is no federal official at the assistant 
   secretary level accountable for ensuring that the needs of 
   people with disabilities are addressed in federal health 
   policy.  The only assistant secretary with responsibility 
   solely for disability issues is at the Department of 
   Education's Office of Special Education and Rehabilitation 
   Services (OSERS), which has no primary jurisdiction over 
   health care issues.  While there are several offices and 
   agencies at the Department of Health and Human Services (DHHS) 
   that address disability issues--including the Administration 
   on Developmental Disabilities (ADD), the Social Security 
   Administration (SSA), the Health Care Financing Administration 
   (HCFA), and the National Center for Medical
   Rehabilitation Research (NCMRR)--there is no subcabinet-level 
   position responsible for coordinating disability issues in 
   health policy.  To ensure the incorporation and coordination 
   of a disability perspective in health policy, the National 
   Council strongly recommends the establishment of an Office of 
   the Assistant Secretary for Disability at DHHS.

Recommendation 15:

   Congress should require state and local agencies that provide 
   federally funded services for persons with disabilities to 
   develop coordinated service delivery plans integrating health 
   and social services.

   Under the current system, social service programs and health 
   service programs tend to operate distinctly and disjointedly.  
   Vocational rehabilitation, mental health and mental 
   retardation, housing, and transportation programs are 
   administered separately from each other and distinct from the 
   health system.  The level of separation varies within and 
   among states.  The result of this fragmentation is a complex 
   web of programs that are difficult to coordinate to meet the 
   multifaceted needs of persons with disabilities and others.  
   In particular, health system gaps that might be addressed by 
   other programs, such as home care services funded by the 
   Social Services Block Grant, often go unmet because linkages 
   are lacking.  For many persons with disabilities, the missing 
   links and lack of knowledge about available support services 
   create one more obstacle to independence.
Greater integration of health and social services will promote 
health and independence, and this could be achieved through the 
creation of a new Office of the Assistant Secretary for 
Disability at DHHS.

   Congress should facilitate linkages by requiring state and 
   local agencies that receive federal funds to establish a 
   planning and implementation process for coordinated delivery 
   of social and health services for persons with disabilities.  
   The agencies administering these programs should include 
   vocational rehabilitation; health services; employment and 
   training; housing and transportation; and  independent living; 
   among others.  Overall system objectives of achieving 
   independence and community commitment should be established.  
   Such integration may reveal a wealth of resources heretofore 
   untapped by or unknown to persons in need and can ensure that 
   a continuum of services is available to fill in gaps in 
   coverage and to promote health and independence.

Recommendation 16:

   The Secretary of the Department of Health and Human Services 
   should encourage schools for health professionals to develop
   curricula that educate providers about the health concerns of 
   persons with disabilities.
Programs offering social services such as health care, vocational 
rehabilitation, employment and training, housing, transportation, 
and independent living must be better coordinated to meet the 
needs of people with disabilities.

   In order to better serve the population with disabilities, 
   health-professional training should include training about 
   disabilities.  Model curricula should be developed and 
   distributed to help educate future providers about health 
   concerns of people with disabilities and their pursuit of 
   independence.  Providers should be encouraged to learn how to 
   examine and provide services to persons with severe 
   disabilities.  Sensitization will not only improve providers' 
   skills in serving populations with disabilities, but may also 
   encourage providers to be more accessible to persons with 
   disabilities.
Providers should be educated to provide effective health care for 
persons with severe disabilities, to help them prevent secondary 
disabilities and to maintain and enhance their health and 
functional capacity.
   Such a curriculum should be an integral component of a broader 
   educational approach to providers of health services that 
   includes curing, restoring, and maintaining functional 
   capacity.  By studying the needs of persons with disabilities 
   and the importance of ongoing services to maintain health, 
   providers may gain insight and perspective on their role in 
   promoting health outcomes in the larger community.

E. Establish a Research Agenda of Disability and Health Issues

   The findings from this study reveal that much is unknown about 
the characteristics of persons with disabilities and their access 
to health insurance, such as costs by health care category 
associated with specific chronic conditions and disabilities, 
figures on access to insurance by chronic condition and 
disability, and costs of personal assistance and assistive 
technology associated with different chronic conditions and 
disabilities.  The Council recommends a series of studies be 
undertaken to help alleviate this information gap.  The Senate 
Subcommittee on Disability Policy, the House Committee on Ways 
and Means, and the House and Senate Appropriations Committees 
have jurisdiction in this area.

Recommendation 17:

   The Agency for Health Care Policy and Research should 
   encourage those who study treatment effectiveness to consider 
   outcomes that are relevant to the population with 
   disabilities.

   Outcomes research and the study of the effectiveness of 
   medical treatments typically do not consider relative 
   effectiveness for those with disabilities.  By focusing on 
   particular medical or health outcomes as a measure of 
   effectiveness, a treatment or service may be deemed 
   ineffective for persons with disabilities even though the
   outcome measure used was inappropriate for them.  For example, 
   a study might be designed to explore the effectiveness of 
   physical therapy as measured by returning persons to work and 
   may conclude that physical therapy is not an effective 
   treatment for some persons with disabilities.  However, had 
   the measure of effectiveness been improvement in ability to 
   complete activities of daily living, the finding might have 
   been that physical therapy is quite effective for those with 
   disabilities.  Incorporating functional outcome and quality of 
   life measures that are meaningful to the population with 
   disabilities will help ensure that findings of effectiveness 
   are relevant to them.






Studies should be conducted incorporating functional outcome and 
quality of life measures that are meaningful to people with 
disabilities.
   The Agency for Health Care Policy and Research can help 
   promote an understanding of the importance of functional 
   outcomes by encouraging that studies of treatment 
   effectiveness conducted under its auspices integrate 
   functional outcome measures and quality of life indicators.

Recommendation 18:

   Congress should direct the Social Security Administration to 
   determine why participation is low under Section 1619 and 
   other work incentive provisions, in order to develop and 
   implement programs that will encourage use of SSI work 
   incentives.
The Social Security work incentive provisions offer many persons 
with disabilities the opportunity for employment and a step 
toward independence, and efforts should be made to expand the use 
of these provisions.
   Section 1619 of the Social Security Act became a permanent 
   provision in 1986 under the Employment Opportunities for 
   Disabled Americans Act.  Section 1619 is a work incentive 
   program that allows SSI recipients to earn an income above the 
   SSI "substantial gainful activity" level, receive a special 
   SSI payment, and maintain Medicaid coverage.  Despite this 
   relaxation of income limits for SSI and Medicaid eligibility, 
   few persons with disabilities take advantage of Section 1619 
   or other Social Security work incentive provisions.  The major 
   reasons for low participation appear to be a lack of 
   information about the provision and a belief that working will 
   disqualify one from coverage.

   In order to address these issues, the Social Security 
   Administration has implemented an outreach campaign during the 
   past few years; yet, it is unclear whether this effort has 
   effectively increased participation in Section 1619.  The 
   Social Security Administration should assess its current 
   outreach efforts to determine their impact on participation 
   and to identify alternative outreach approaches that might 
   better encourage eligible persons with disabilities to 
   participate.  The assessment should consider whether there are 
   particular features of the work incentive program that 
   discourage participation, rather than simply a lack of 
   information and understanding about the program.  Section 1619 
   and the other work
   incentive programs offer many persons with disabilities the 
   opportunity for employment and a step toward independence.  
   Every effort should be made to improve their accessibility to 
   eligible persons with disabilities.

Recommendation 19:

   Congress should authorize and fund a consensus conference on 
   developing an acceptable definition of disability that could 
   be used as a basis for national surveys.


   The lack of a common definition of disability has made 
   research and policy decisions related to the population with 
   disabilities confusing and difficult.  Congress should 
   authorize a consensus conference to be conducted under the 
   auspices of the National Council on Disability.  The 
   conference would provide a forum for researchers, 
   policymakers, disability advocates, and others to develop a 
   strategy for designing a survey that identifies and tracks the 
   population with disabilities.  This meeting would be an 
   opportunity to introduce the most current thinking on these 
   issues and to consider what factors, such as level of 
   functioning in a range of activities, constitute the most 
   appropriate indicators of disability.  Subsequent development 
   of an annual survey utilizing these measures would provide a 
   better understanding of how the population with disabilities 
   changes over time and would facilitate the development of 
   future surveys targeted specifically at this population.



A consensus conference is needed to develop a strategy and 
methodology for a longitudinal study on disability, examining a 
wide array of variables affecting people with disabilities.

Recommendation 20:

   Congress should require the Bureau of the Census to conduct a 
   survey to determine the extent to which persons with 
   disabilities and others lack adequate health insurance.

   The Bureau of the Census should be required to conduct a 
   national study in conjunction with the National Council on 
   Disability to determine the extent to which people lack 
   adequate health insurance.  To date, there have been few 
   attempts to assess how well insurance meets the health care 
   needs of individuals.  Determining the level of adequate 
   coverage is critical to developing appropriate priorities and 
   policies that address the gaps in health insurance affecting 
   the health and independence of millions of Americans.  The 
   study should attempt to oversample the population with 
   disabilities who might be expected to have inadequate health 
   insurance.  Efforts should also be made to capture the service 
   areas that are unlikely to be covered by insurance as well as 
   the level of financial risk (e.g., levels of cost
   sharing, maximum benefit levels) and out-of-pocket expenses 
   incurred because of insurance shortfalls.

Recommendation 21:

   Congress should direct the Department of Labor, the Social 
   Security Administration, and the Health Care Financing 
   Administration, in consultation with the National Council on 
   Disability, to design a study assessing the scope and 
   consequences of underemployment among the population with 
   disabilities that often results from work disincentives in 
   public insurance programs.

   These organizations, in consultation with the Council, should 
   construct a study to assess the extent to which persons with 
   disabilities receiving SSDI and Medicare and SSI and Medicaid 
   are employed below their level of ability or skills.  These 
   individuals are considered underemployed.  There is 
   substantial anecdotal evidence that many persons with 
   disabilities work less than full-time to ensure that their 
   earnings do not exceed the income limits of SSDI and SSI, 
   which would result in the loss of medical benefits.  Other 
   individuals may obtain low-skilled or low-paying jobs for 
   which they are overqualified in order to work and still meet 
   income eligibility requirements.  However, no formal study of 
   these issues has been conducted.  Such a study should 
   determine how many program participants are underemployed, the 
   extent of their underemployment (i.e., how close they are to 
   working at their full potential), the nature of employment, 
   and the potential cost impact.  This study would provide 
   important insight into how these federal programs could be 
   better designed to minimize work disincentives and to promote 
   the productivity and independence of persons with disabilities 
   by supporting their health service needs.

Better data are needed on all aspects of disability, including 
health care costs and utilization, access to health insurance, 
and disincentives to work associated with access to insurance, to 
enhance the quality of decisionmaking on disability policy.

Recommendation 22:

   Congress should authorize and fund the National Council on 
   Disability to commission a study examining the health 
   consequences and secondary disabilities that persons with 
   disabilities may suffer because of lack of timely, appropriate 
   treatment.

   Americans with disabilities find that the acute care 
   orientation of the health care system fosters deterioration of 
   health until serious medical services are required.  
   Preventive services directed at maintaining health are 
   typically not covered by private or public insurance, even 
   though lack of these services may cause eroding health and 
   secondary disability in some.  Many in the disability 
   community believe that ongoing maintenance services, such as
   physical therapy and personal assistance, can help keep an 
   individual healthy and active, and can prevent the onset of 
   further debilitating conditions.  It is also believed that 
   providing services to prevent the onset of secondary 
   disability is cost-effective.  These issues need further 
   exploration.  A well-designed study should examine the extent 
   to which persons with disabilities experience secondary 
   disability and other health conditions that might have been 
   avoided with timely treatment.


Access to health insurance and health-related services will 
substantially improve the quality of life of
people with disabilities and will enhance their abilities to live 
independently and productively.





NATIONAL COUNCIL MEMBER AND STAFF BIOGRAPHIES


           National Council Members

John A. Gannon, Acting Chairperson

     John Gannon of Cleveland, Ohio, and Washington, D.C., 
founded John A. Gannon and Associates. His firm has offices in 
Columbus and Cleveland, Ohio; Denver, Colorado; and Washington, 
D.C. A fire fighter for more than 30 years, Mr. Gannon was an 
active leader of the International Association of Fire Fighters 
(IAFF) Local 93. Starting as a member of the local IAFF 
committee, he eventually became president, a position he held for 
10 years before being elected to national office.

     In September 1988, Mr. Gannon was elected IAFF President 
Emeritus. He had served as president of the 170,000-member 
organization since 1980. Under his leadership, the IAFF expanded 
its role in occupational safety and health. Concerned about the 
hazards of his profession, he guided and directed a series of 
programs to promote greater safety and health protection. One 
program sponsored research on safer garments and equipment for 
fire fighters. Mr. Gannon also fostered development of the IAFF 
Burn Foundation, which raises funds for research on the care of 
people who have experienced severe burns. In 1985, the 
Metropolitan General Hospital in Cleveland dedicated a John 
Gannon Burn and Trauma Center in recognition of his support for 
the hospital.

     Mr. Gannon was elected vice president of the AFL-CIO, with 
which the IAFF is affiliated. Within the AFL-CIO he is vice 
president of the Public Employee Department. On the Executive 
Council, he is a member of several committees. He serves on the 
board of the National Joint Council of Fire Service Organizations 
and in 1982 served as its chairman. He is a member of the board 
of the Muscular Dystrophy Association. Mr. Gannon attended Miami 
University in Ohio and Glasgow University in Scotland, and 
studied at Baldwin-Wallace College and Cleveland State 
University.

Kent Waldrep, Jr., Vice Chairperson

       Kent Waldrep has been involved with disability issues on 
the local, state, and national level since suffering a spinal 
cord injury in 1974 while playing football for Texas Christian 
University. Since 1981, Mr. Waldrep has served on the National 
Council by presidential appointment. He is National Council vice 
chairperson and chairman of the Research and Prevention 
Committee. He was instrumental in formulating the National 
Council initiative on preventing primary and secondary 
disabilities.

     Mr. Waldrep, one of 15 original drafters of the Americans 
with Disabilities Act, gave the legislation its name. He has 
lectured nationwide on subjects ranging from national disability 
policy to medical research targeted at curing paralysis. He 
founded the American Paralysis Association and the Kent Waldrep 
National Paralysis Foundation. He has appeared on Good Morning 
America, the Today Show, the NBC Nightly News, and CNN, and been 
featured in People, Look, USA Today, and other magazines.

     He was selected by the U.S. Jaycees as one of 1985's ten 
Outstanding Young Men in America and received a special award 
from the Texas Sports Hall of Fame and a sports/fitness award 
from the President's Council on Physical Fitness. Kent Waldrep 
Days have been celebrated in four Texas cities and Birmingham, 
Alabama. He serves on many boards, including the Texas 
Rehabilitation Commission. He is past chairman of the Texas 
Governor's Committee for Disabled Persons and the Dallas 
Rehabilitation Institute. He also is chairman of Turbo-Resins, 
Inc., a family-owned and -operated aviation repair business. He
lives in Plano, Texas, with his wife Lynn and two sons, Trey and 
Charles Cavenaugh.

Linda Wickett Allison

     Linda Allison of Dallas, Texas, is a long-time advocate of 
people with disabilities. She is a board member of the National 
Paralysis Foundation and a trustee for the International Spinal 
Research Trust. Mrs. Allison, who grew up in Fort Worth, has 
three children. Her daughter Marcy was paralyzed from the waist 
down in a 1979 automobile accident. Marcy graduated from the 
University of Texas School of Law in 1986 and practices law in 
Austin. Mrs. Allison's late husband, James N. Allison, Jr., owned 
the Midland Reporter Telegram and other newspapers in Texas and 
Colorado and was former deputy chair of the Republican National 
Committee.

Ellis B. Bodron

     Ellis Bodron of Vicksburg, Mississippi, has been a 
practicing attorney since 1947. He served 36 years as a member of 
the Mississippi legislature, one term in the House of 
Representatives and eight terms in the Mississippi Senate. He 
also chaired the Senate Finance Committee from 1961 until 1983.

     Mr. Bodron, who is blind, is associated with several civic 
organizations, including the Vicksburg Lions Club, Vicksburg 
Chamber of Commerce, and the University of Mississippi Alumni 
Association. In addition, he is a member of the Advisory Board of 
Directors, Deposit Guaranty National Bank.

     Mr. Bodron has also been a member of the Agriculture and 
Industrial Board, which preceded the Board of Economic 
Development, and the Committee of Budget and Accounting and Board 
of Trustees of the Mississippi Public Employees Retirement 
System.

     Ellis Bodron graduated with a Bachelor of Arts and a 
Bachelor of Law Degree from the University of Mississippi. He is 
married with two children.

Larry Brown, Jr.

     Since 1981, Larry Brown of Potomac, Maryland, has been the 
Xerox business and community relations manager for the 
Mid-Atlantic Region, Coastal Operations, Custom Systems Division. 
In 1991 he became Government and Community Relations Manager with 
Integrated Systems Operations.

     Mr. Brown was a running back for the Washington Redskins for 
eight years. During that time he received many awards, including 
Most Valuable Player in the National Football League for 1972. He 
was inducted into the Washington, D.C., Touchdown Hall of Fame in 
1991.

     After retiring from football in 1977, he worked at E.F. 
Hutton as a personal financial management adviser. He has been 
special assistant to the director, Office of Minority Business 
Enterprise, Department of Commerce. He is involved with youth, 
people with disabilities, and senior citizens. Mr. Brown has 
spoken at schools, colleges, and universities on topics such as 
motivation, discipline, and camaraderie. He works with many 
organizations, including the Friends of the National Institute on 
Deafness and Other Communication Disorders, the Deafness Research 
Foundation, and the Vincent Lombardi Foundation.

Mary Ann Mobley Collins

     A former Miss America who lives in Beverly Hills, 
California, Mary Ann Collins has a career in film and television 
and on Broadway. She has co-hosted the National March of Dimes 
telethons with her husband, Emmy-award-winning actor Gary 
Collins; she is a member of the National Board of the March of 
Dimes Foundation and is national chair of the Mother's March 
against Birth Defects. She is a member of SHARE, a Los 
Angeles-based women's organization that has raised more than $6 
million for the Exceptional Children's Foundation for the 
Mentally Retarded. She serves on the National Board of the Crohns 
and Colitis Foundation.

     Mrs. Collins helped raise funds for the Willowood Foundation 
in her native Mississippi, which provides homes for young adults 
with mental and physical learning disabilities. She has received 
many awards and honors, including the 1990 International 
Humanitarian Award from the Institute for Human Understanding, 
Woman of Distinction 1990 from the National Foundation for 
Ileitis and Colitis, and the HELP Humanitarian
Award of 1985 from HELP for Handicapped Children. She has filmed 
documentaries in Cambodia, Ethiopia, Mozambique, Somalia, Kenya, 
Sudan, and Bolivia on the plight of starving children and people 
with disabilities.

Anthony H. Flack

     Anthony Flack of Norwalk, Connecticut, is president of 
Anthony H. Flack & Associates. He has been a member of the board 
of Families and Children's Aid of Greater Norwalk and has worked 
with the Child Guidance Center of Greater Bridgeport, the Youth 
Shelter in Greenwich, Hall Neighborhood House in Bridgeport, and 
the Urban League of Greater Bridgeport. Mr. Flack is a member of 
the Allocations and Admissions Committee, United Way of Norwalk, 
and received the Bell Award for outstanding service in the field 
of mental health at the Bridgeport Chapter, Connecticut 
Association of Mental Health.

John Leopold

     John Leopold of Pasadena, Maryland, has 18 years' experience 
in elected state office. He was elected to the Hawaii State House 
of Representatives in 1968 and was re-elected in 1972. In 1974, 
Mr. Leopold was elected to the Hawaii State Senate. In 1982, he 
became the first Republican in Maryland history elected from 
District 31 in Anne Arundel County to the Maryland House of 
Delegates, where he served until 1991.

     An advocate of people with disabilities, Mr. Leopold is a 
member of the Learning Disabilities Association of Anne Arundel 
County, the Anne Arundel County Committee on Employment of People 
With Disabilities, and the University of Maryland Hospital Infant 
Study Center Planning Advisory Board. He has served in other 
appointed and elected positions, including the Hawaii State Board 
of Education in 1968, the National Advisory Council for the 
Education of Disadvantaged Children in 1977, and the Maryland 
State Accountability Task Force for Public Education in 1974.

     Mr. Leopold has written and produced cable television 
commercials in Maryland, written a weekly interview column for a 
local publication, and hosted and produced a weekly radio
public affairs program. He graduated from Hamilton College in 
Clinton, New York, with a B.A. in English.

Robert S. Muller

     Robert Muller of Grandville, Michigan, began his career with 
Steelcase, Inc., in 1966 and is now an administrator in human 
resources. He is an adjunct professor in the Department of 
Psychology at Aquinas College and in the Department of Education 
at Calvin College in Grand Rapids. He serves on the board of 
trustees for Hope Network and Foundation in Grand Rapids, which 
serves 1,700 adults with disabilities. In April 1981, he received 
an honorary degree in educational psychology from the Free 
University in Amsterdam, the Netherlands.

     Mr. Muller holds a B.S. in business administration from 
Aquinas College and in 1978 was voted Outstanding Alumnus of the 
Year. He has lectured at colleges and universities nationally and 
internationally. He is a board member for several national, 
state, and local organizations.

     In May 1987, Mr. Muller and his wife Carol hosted a 
first-time event at the White House with the vice president. The 
Celebration of Disabled Americans at Work was co-sponsored by 
several major corporations. Mr. Muller now serves as president of 
the National Roundtable on Corporate Development for Americans 
with Disabilities. In 1985, he received the Liberty Bell Award 
from the Grand Rapids Bar Association. In 1988, he was national 
co-chair of the Disabled Americans for President Bush Campaign 
and in 1992 was an honorary national member of the Bush/Quayle 
Disability Coalition Campaign.  In November 1992, Mr. Muller was 
appointed to the Governor's Commission on Handicapped Concerns 
for Michigan.

George H. Oberle, P.E.D.

     Dr. George Oberle of Stillwater, Oklahoma, has more than 40 
years' experience in the field of health, physical education, and 
recreation. He began his career as a high school teacher and 
coach, and has been a professor and director of the School of 
Health, Physical Education and Leisure at Oklahoma State 
University since 1974. Dr. Oberle is a consultant to many 
organizations in the area of administration and adaptive physical 
education.  In 1988, he worked with the Kennedy Foundation to
organize and direct a new program of Unified Sports for the 
Special Olympics.

     Dr. Oberle chaired the College and University Administrators 
Council (1980-82); was president of the Association for Research, 
Administration, Professional Councils and Societies (1984-87); 
and served as a board member of the American Alliance of Health, 
Physical Education, Recreation and Dance (1985-89). Awards 
include the 1985 Centennial Award from the American Association 
of Health, Physical Education, Recreation and Dance; and 
Meritorious Service Awards from Indiana and Oklahoma.

     He was selected for Men of Achievement in 1975 and 
recognized in Who's Who of the Southwest in 1977. Dr. Oberle 
received his doctorate from Indiana University in administration 
and adapted physical education. He lectures extensively about 
wellness promotion, adapted physical activity, sports, and 
recreation for people with disabilities.

Sandra Swift Parrino

     As a member and former chairperson of the National Council, 
Sandra Swift Parrino has played an active role in key issues 
affecting the lives of people with disabilities. Nominated by 
President Reagan in 1982, appointed chair by the President in 
1983, and reappointed by President Bush, Sandra Parrino has 
supported the rights of people with disabilities before Congress, 
in the media, and before groups nationwide. Under her leadership, 
the National Council has been a driving force to create public 
policies that affect the nation's people with disabilities.

     During her tenure as chair, the National Council worked for 
the creation and enactment of legislation for people with 
disabilities; issued a policy statement, National Policy for 
Persons With Disabilities; convened hearings nationwide to 
solicit comments and recommendations from people with 
disabilities about how to eliminate discrimination; issued a 
major report, Toward Independence, that outlines key components 
of a comprehensive civil rights law protecting people with 
disabilities; initiated the first national survey of attitudes 
and experiences of Americans with disabilities, in conjunction 
with Louis Harris and Associates, Inc.; issued On the Threshold 
of Independence, a
report outlining specifics of the Americans with Disabilities 
Act; created and developed the Americans with Disabilities Act; 
participated with President Bush at the signing of the Americans 
with Disabilities Act; conducted the first National Conference on 
the Prevention of Primary and Secondary Disabilities; issued 
reports on minorities with disabilities and personal assistance 
services; and planned reports on health insurance, financing 
assistive technology, and educating students with disabilities.

     Before becoming National Council chair, Sandra Parrino 
founded and directed the Office for the Disabled, in Ossining and 
Briarcliff Manor, New York, where she created a regional program 
for public and private organizations that focused on programs for 
people with disabilities and compliance with 504. She has more 
than 25 years' experience on boards, councils, commissions, 
committees, and task forces at the federal, regional, state, and 
local levels and as an expert witness, community leader, 
organizer, and activist.

     Mrs. Parrino has represented the U.S. government on 
disability issues in many countries. She has been invited by the 
Department of State to represent the United States at the 
Meetings of Experts in Finland and China, and represented the 
United States at the United Nations Center for Social Development 
in Vienna several times. In 1990, 1991, and 1992 she was a 
delegate at the Third Committee on Social Development of the 
United Nations. In 1991, she was invited by the People's Republic 
of China to assist them in their efforts to help people with 
disabilities. At the request of the government of Czechoslovakia, 
she and the National Council were invited to conduct the Eastern 
European Conference on Disabilities for participants from 
Czechoslovakia, Poland, and Hungary.

     Mrs. Parrino graduated from Briarcliff College with a B.A. 
in history, and completed courses at Bennett College, GuildHall 
School of Drama in London, and the Yale School of Languages. In 
1992, Mrs. Parrino received an Honorary Doctorate of Humane 
Letters from St. John's University in New York. Her husband 
Richard is a rheumatologist. They have three children, two of 
whom have disabilities. Sandra Parrino was born in New Haven, 
Connecticut, and lives in Briarcliff Manor, New York.

Mary Matthews Raether

     Mary Raether of McLean, Virginia, is associated with St. 
John's Child Development Center, a nonprofit organization 
providing instruction, employment training, and independent and 
group home living skills for people with severe mental 
disabilities, especially autism. Mrs. Raether has been an officer 
and trustee of St. John's since 1985, has chaired the public 
relations committee, and participated on the executive, 
nominating, investment, and development committees.

     Mrs. Raether has been active in civic, educational, and 
religious organizations in the Washington metropolitan area. 
While community vice president of the Junior League of 
Washington, she developed emergency grant procedures and 
fund-raising information services for small and emerging 
nonprofit organizations. Mrs. Raether has 10 years' experience as 
legislative assistant to Reps. George Bush and Barber Conable. 
She specialized in tax, social security, medicare/medicaid, and 
trade issues. She considers her efforts in clarifying the tax 
status of lobbying by nonprofit organizations an outstanding 
career accomplishment. She received a B.A. from the University of 
Texas at Austin in 1962. She is married and has two children.

Anne Crellin Seggerman

     Anne Crellin Seggerman of Fairfield, Connecticut, is the 
founder of Fourth World Foundation, Inc., a company engaged in 
the development of interfaith media.

     A member of the Bridgeport Urban Gardens and Youth at 
Risk/Breakthrough Foundation, Mrs. Seggerman founded and serves 
as the chairman of the board of the Fairfield County Chapter of 
Huxley Institute for Biosocial Research. She previously was a 
member of the President's Committee on Mental Retardation.

     Mrs. Seggerman is listed in Who's Who of American Women and 
has received numerous honors including an Honorary Doctor of 
Humane Letters Award from Sacred Heart University, the 
Association of Knights and Ladies of the Holy Sepulchre, and the 
American Association of the Order of Malta. She was
previously appointed to serve on the Housing of Handicapped 
Families of the Department of Housing and Urban Development.

     Mrs. Seggerman is experienced in providing care, treatment, 
and rehabilitation to people with schizophrenia and has extensive 
experience with alcoholics and children with learning 
disabilities. She is married and has six adult children.

Michael B. Unhjem

     Michael Unhjem of Fargo, North Dakota, is president of Blue 
Cross Blue Shield of North Dakota. He is the youngest person ever 
elected to the North Dakota House of Representatives, a member of 
the National Conference of Commissioners on Uniform State Laws, 
and he served in 1988 as president of the National Mental Health 
Association.

     Mr. Unhjem has been involved in local and national 
organizations, including the Advisory Mental Health Council of 
the U.S. Department of Health and Human Services; the Governor's 
Commission on Mental Health Services; the National Alliance for 
Research on Schizophrenia and Depression; and the National Mental 
Health Leadership Forum. Awards include the 1989 Special 
Presidential Commendation from the American Psychiatric 
Association, the 1988 Distinguished Leadership Award from the 
North Dakota Psychological Association, and the National 
Excellence in Leadership Award from North Dakota.

     He has been recognized by Who's Who in American Politics, 
Who's Who in North Dakota, Who's Who in the Midwest, 
Personalities of America, and Men of Achievement. Mr. Unhjem 
graduated magna cum laude with a B.A. in history and political 
science from Jamestown College in North Dakota in 1975. In 1978, 
he earned a J.D. with distinction from the University of North 
Dakota School of Law in Grand Forks. He is married and has two 
children.

Helen Wilshire Walsh

     Helen Walsh of Greenwich, Connecticut, is a board member of 
the Rehabilitation Institute of Chicago, the largest U.S. 
rehabilitation center. She has been involved in disability 
advocacy for many years and has been associated with the 
Institute of Rehabilitation Medicine at the New York Medical
Center, where she served as associate trustee. She has served as 
vice president, president, and chairman of the board of 
Rehabilitation International USA.

     Ms. Walsh has been a member of the President's Committee on 
the Employment of People With Disabilities, and was appointed by 
the President to serve as a member of the National Advisory 
Council of Vocational Rehabilitation. In 1976, Ms. Walsh received 
the Henry J. Kessler Award for outstanding service in the 
rehabilitation field. She has received the Rehabilitation 
International Award for Women and the Anwar Sadat Award for 
outstanding work in the field of rehabilitation.

            National Council Staff

Andrew I. Batavia

     Andrew I. Batavia is executive director of the National 
Council on Disability.  He formerly served as research director 
for Disability and Rehabilitation Policy at Abt Associates.  
Prior to joining Abt, he was associate director of the White 
House Domestic Policy Council, where he was responsible for 
coordinating federal policy on health care, disability, housing, 
education, and veterans affairs.  He received his bachelor's 
degree in economics and sociology from the University of 
California, his master's degree in health services research from 
Stanford Medical School, and his jurisdoctorate degree from 
Harvard Law School.

     After law school, Mr. Batavia served for two years as an 
attorney for the U.S. Department of Health and Human Services.  
He left that position in 1986 when he was awarded the Mary E. 
Switzer Distinguished Research Fellowship in Medical 
Rehabilitation Finance from the National Institute on Disability 
and Rehabilitation Research (NIDRR) of the U.S. Department of 
Education.  He then served for four years as associate director 
for Health Services Research at the National Rehabilitation 
Hospital Research Center in Washington, D.C.  In that capacity, 
he wrote 2 books and more than 20 other publications on issues of 
disability and health care policy.

     In 1987, Mr. Batavia was made a Fellow of the Washington 
Academy of Sciences.  In 1988, he was awarded the Distinguished 
Disabled American Award from the President's
Commission on Employment of People with Disabilities.  In 1989, 
he received an International Fellowship from the International 
Disability Exchanges and Studies (IDEAS) Program of NIDRR, and 
conducted research on how the Dutch Health Care System affects 
people with disabilities.  In 1990, he was appointed a White 
House Fellow by President Bush and served as special assistant to 
Attorney General Richard Thornburgh at the U.S. Department of 
Justice.

     Mr. Batavia is the founding associate editor of the Journal 
of Disability Policy Studies and a cofounding board member of 
Independent Living Assistance, Inc.  He is an adjunct assistant 
professor at the Georgetown University School of Medicine and a 
member of the Bar of the U.S. Supreme Court, the Bar of the 
District of Columbia, the State Bar of California, and 
Georgetown's Kennedy Institute of Ethics.

Billie Jean Hill

     Billie Jean Hill joined the staff of the National Council on 
Disability as program specialist in March 1992. Previously, Ms. 
Hill was director of communications and editor for the Blinded 
Veterans Association and earlier served as founding director of a 
statewide broadcast service for persons with reading disabilities 
with Mississippi Educational Television in her home state. She 
was appointed to work on a governor's commission in Mississippi 
to report on the needs of children and youth in rural Mississippi 
who are disabled. Ms. Hill studied journalism and education at 
Mississippi University for Women and at the University of London 
in England. She serves as chairperson of the Board of 
Publications for the American Council of the Blind.

Mark S. Quigley

     Mark Quigley joined the staff as a public affairs specialist 
in May 1990. He previously served as a consultant to the U.S. 
National Commission on Drug-Free Schools. He is a former program 
coordinator at the U.S. Interagency Council on the Homeless and 
former director of communications at the White House Conference 
on Small Business. Mr. Quigley graduated magna cum laude in 1979 
from Northern Virginia Community College in Annandale, Virginia, 
with an A.A. in general studies. He received a B.A. in government 
and politics in 1983, and an
M.P.A. in public administration in 1990 from George Mason 
University in Fairfax, Virginia.

Brenda Bratton

     Brenda Bratton, executive secretary for the National 
Council, was formerly employed as a secretary at the National 
Transportation Safety Board. Ms. Bratton graduated from Farmville 
Central High School and the Washington School for Secretaries.

Stacey S. Brown

     Stacey Brown is staff assistant to the chairperson and has 
been employed by the National Council since 1986. Prior 
experience includes employment as a receptionist and clerk with 
the Board for International Broadcasting and with the Compliance 
and Enforcement Unit of the Architectural and Transportation 
Barriers Compliance Board, where he was a student assistant. Mr. 
Brown is a graduate of Howard University in Washington, D.C., 
where he earned a B.A. in political science in 1987.

Janice Mack

     Janice Mack, who serves as the administrative officer for 
the National Council, was formerly employed with the National 
Oceanic and Atmospheric Administration. Ms. Mack graduated from 
Calvin Coolidge High School.

Lorraine Williams

     Lorraine Williams is office automation clerk for the 
National Council. She graduated from Valdosta High School in 
Valdosta, Georgia, and attends Strayer College, where she is 
majoring in computer information systems science.