DOCUMENT RESUME

ED 355 695 EC 301 925

TITLE Sharing the Risk and Ensuring Independence: ADisability Perspective on Access to Health Insuranceand Health-Related Services. A Report to thePresident and the Congress of the United States.

INSTITUTION National Council on Disability, Washington, DC.PUB DATE 4 Mar 93NOTE 82p.PUB TYPE Reports Research/Technical (143)

EDRS PRICE MF01/PC04 Plus Postage.DESCRIPTORS Delivery Systems; *Disabilities; Employment; *Health

Care Costs; *Health Insurance; Independent Living;Medical Services; Normalization (Handicapped); PolicyFormation; *Public Policy

ABSTRACT

This study was designed to identify major issues ofaccess to health insurance and health-related services for personswith disabilities and to develop recommendations that reflect adisability perspective on how these issues can be addressed. Findingsand recommendations of the study are based on a review of theliterature and testimony from over 75 individuals who participated in3 public forums. The following findings indicated that: (1) personswith disabilities face major hurdles in obtaining adequate privatehealth insurance; (2) the employment-based private insurance systemadversely affects access to private health insurance, particularlyfor individuals with disabilities who are self-employed or employedby small firms; (3) limitations in the range of services coveredunder public programs may require that an individual beinstitutionalized to receive needed services; (4) people withdisabilities often forego employment opportunities in order tomaintain public health insurance; and (5) the range of servicescovered by insurance often restricts coverage of services importantfor persons with disabilities to achieve independence.Recommendations for Congressional action to expand availability andaffordability of health insurance are provided. (PB)

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Reproductions supplied by EDRS are the best that can be madefrom the original document.

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Sharing the Risk and Ensuring Independence:tsD

A Disability Perspective onct Access to Health Insurance

and Health-Related Services

A Report to thePresident and the Congressof the United States

March 4, 1993

National Council on Disability

National Council on Disability800 Independence Avenue, S.W.Suite 814Washington, DC 20591

202-267-3846 voice202-267-3232 TDD

An IndependentFederal Agency

Letter of Transmittal

March 4, 1993

The PresidentThe White HouseWashington, 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 EnsuringIndependence: A Disability Perspective on Access to HealthInsurance and Health-Related Services.

The Council prepared this report in consultation with anAdvisory Committee on Access to Health Insurance and Health-RelatedServices; numerous persons with disabilities and their families;experts on health insurance and disability policy; advocates;providers; insurers; federal and state government agencyrepresentatives; and others interested in this important topic.This report summarizes the findings of a study commissioned by theCouncil and presents the Council's recommendations for improvingaccess to health insurance and health-related services for personswith disabilities.

The National Council has a long-standing commitment toimproving access to health insurance and health-related services.While the landmark Americans with Disabilities Act (ADA) openedmany doors for persons with disabilities, it is clear that othermajor barriers to these opportunities still remain. Access tohealth insurance and health-related services is a key factoraffecting employment decisions and achievement of independence forpersons with disabilities. Furthermore, the experience of personswith disabilities in obtaining adequate health insurance reflectsthe problems facing millions of other Americans. Understanding theperspectives of persons with disabilities can provide importantinsights into how coverage might be better constructed to promote

The President

Page 2

the health and financial security of all Americans. The Council isconfident that the recommendations in this report will provide afoundation for a health insurance system that is better equipped tomeet the needs not only of persons with disabilities and theirfamilies but of all Americans.

We look forward to working with you as we seek to improveaccess to health insurance and health-related services for personswith disabilities. In achieving this essential goal we must sharethe risk and thereby ensure independence for all.

Sincerely,

John A. GannonActing ChairpersonFebruary 1993-present

Sandra Swift ParrinoChairpersonOctober 1983-January 1993

(This same letter of transmittal was sent to the President ProTempore of the Senate and the Speaker of the House ofRepresentatives.)

ACKNOWLEDGMENTS

The Council wishes to acknowledge and convey its sincereappreciation to the many individuals who contributed to thisreport. Members of the Advisory Committee, numerous personswith disabilities and their families, providers, insurers, federalagencies, state agencies, advocates, and other experts from acrossthe country contributed to this effort. We are grateful for theirparticipation in public forums, their attendance at advisorymeetings, and their input and assistance to the Council in theprocess of developing the ideas and recommendations contained inthis report. We particularly thank William H. Graves, III, Ed.D.,former director of the National Institute on Disability andRehabilitation 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 Disability800 Independence Avenue, S.W.Suite 814Washington, 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 theadministration, as this document has not been subjected to the A-19 ExecutiveBranch 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 INSURANCEAND 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 37

D. Develop an Integrated and CoordinatedDelivery System 41

E. Establish a Research Agenda of Disability44

NATIONAL COUNCIL MEMBER AND STAFF BIOGRAPHIES 49

61

and Health Issues

APPENDIX

Consortium for Citizens for Disabilities Health Task Force:Principles for Health Car2 Reform from a Disability Perspective

Statement of Principle of the National Study Group on HealthCare System Reform and Peresons with Disabilities

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Providing to the Congress, on a continuous basis, advice,recommendations, and any additional information that the NationalCouncil or the Congress considers appropriate;

Providing guidance to the President's Committee on the Employmentof People with Disabilities; and

Issuing an annual report to the President and the Congress on theprogress that has been made in implementing the recommendationscontained in the National Council's January 30, 1986 report, TowardIndependence.

While many government agencies deal with issues and programsaffecting people with disabilities, the National Council is the only federalagency charged with addressing, analyzing, and making recommendations onissues of public policy that affect people with disabilities regardless of ag:'disability type, perceived employment potential, economic need, specificfunctional ability, status as a veteran, or other individual circumstance. TheNational Council recognizes its unique opportunity to facilitate independentliving, community integration, and employment opportunities for people withdisabilities by ensuring an informed and coordinated approach to addressingtheir concerns and eliminating barriers to their active participation incommunity and family life.

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MISSION OF THE NATIONAL COUNCIL ON DISABILITY

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

Establishing general policies for reviewing the operation of theNational Institute on Disability and Rehabilitation Research (NIDRR);

Providing advice to the Commissioner of the Rehabilitation ServicesAdministration (RSA) on policies and conduct;

Providing ongoing advice to the President, the Cor.gress, the RSAConi.-nissioner, the Assistant Secretary of the Office of SpecialEducation and Rehabilitative Services (OSERS), and the Director ofNIDRR on programs authorized in the Rehabilitation Act;

Reviewing and evaluating on a continuous basis the effectiveness ofall policies, programs, and activities concerning individuals withdisabilities conducted or assisted by federal departments or agenciesand all statutes pertaining to federal programs, and assessing theextent to which these provide incentives to community-basedservices for, promote full integration of, and contribute to theindependence and dignity of individuals with disabilities;

Making recommendations of ways to improve research; thecollection, 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 tothe Congress arid the President regarding the status of researchaffecting persons with disabilities and the activities of RSA andNIDRR;

Reviewing and approving standards for Projects with Industryprograms;

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. DandrowSouthington, Connecticut

Joseph Patrick DitreSabattus, Maine

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

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

Mary Nell LehnhardWashington, D.C.

Douglas Martin, Ph.D.Los Angeles, California

Lynn MeyersWashington, L C.

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Velvet G. MillerBrookline, Massachusetts

Patricia M. OwensBrooklyn, New York

Susan B. ParkerBaltimore, Maryland

Earl R. Pomeroy (Cochair)Bismarck, North Dakota

Eileen RiveraBaltimore, Maryland

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

Susan T. SherryBoston, Massachusetts

Daniel R. ThomasWashington, D.C.

Irving Kenneth Zola, Ph.D.Waltham, Massachusetts

; 0

NATIONAL. COUNCIL ON DISABILITY, MEMBERS AND STAFF*

Members

John A. Gannon, Acting ChairpersonCleveland, Ohio, and Washington, D.C.

Kent Waldrep, Jr., Vice ChairpersonPlano, Texas

Linda W. AllisonDallas, Texas

Ellis B. BodronVicksburg, Mississippi

Larry Brown, Jr.Potomac, Maryland

Mary Ann Mobley CollinsBeverly Hills, California

Anthony H. FlackNorwalk, Connecticut

John LeopoldPasadena, Maryland

Robert S. MullerGrandville, Michigan

George H. Ober le, P.E.D.Stillwater, Oklahoma

Sandra Swift ParrinoBriarcliff Manor, New York

Mary Matthews RaetherMcLean, Virginia

Anne Crellin SeggermanFairfield, Connecticut

Michael B. UnhjemFargo, North Dakota

Helen Wilshire WalshGreenwich, Connecticut

Staff

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

Billie Jean HillProgram Specialist

Mark S. QuigleyPublic Affairs Specialist

Brenda BrattonExecutive Secretary

Stacey S. BrownStaff Assistant

Janice MackAdministrative Officer

Lorraine WilliamsOffice Automation Clerk

*Sandra Swift Parrino initiated this study when she was Chairperson of theNational Council on Disability. At the time of the study, Ethel Briggs wasExecutive Director, Harold Snider was Deputy Director, Katherine Seelmanwas Research Specialist and Kathy Roy Johnson was Program Specialist at theNational Council.

vii

PROJECT STAFF

ChairpersonJohn A. Gannon

National Council on DisabilityCommittee on Health Insurance

Project OfficerKatherine D. Seelman, Ph.D.

National Council on Disability

Project DirectorJudith Arnold

Lewin-ICF

Project ManagerJessica Miller

Lewin-ICF

Policy/Research AssociatesJoyce Sher, Lewin-ICF

Marni Gwyther, Lewin-ICF

ConsultantJane West, Ph.D.

Jane West and Associates

ix

EXECUTIVE SUMMARY

Access to health insurance fundamentally affects thelives ofAmericans with disabilities, influencing their decisionson occupation, employment, and living arrangements. Forpersons with disabilities, the current health care crisis is notnew; they have faced an ongoing struggle to obtain and retainthe health care coverage they need to live independently andproductively. Recently, growing numbers of people withoutdisabilities are also facing barriers to affordable healthinsmrance. As problems of access and cost intensify, thepolitical pressure for comprehensive health care reform hasincreased dramatically.

People with disabilities have an enormous stake in healthcare reform. They are the individuals who have been mostadversely affected by the current health care system. Theyhave the poorest access to private sector coverage, with itsexclusions, limitations, and restrictive underwriting practices.Those who are fortunate enough to have insurance aretypically underinsured, with coverage packages that areoriented to acute care and that do not meet their specificchronic and long-term care needs. Efforts by insurers andemployers to contain costs have imposed a disproportionateburden on many people with disabilities. Many are deterredfrom seeking employment or changing their employmentstatus because of concerns over health care coverage.

The National Council on Disability (NCD) is committed topromoting reforms that advance options for independence andproductivity for persons with disabilities. In originallyproposing the Americans with Disabilities Act (ADA), theCouncil asserted that access to health insurance and health-related services critically affects the ability of persons withdisabilities to pursue employment and achieve independence.While the ADA did not resolve the problem of access to healthcare coverage for persons with disabilities, it improves accessby requiring employers to offer employees with disabilities thesame health benefits as those without disabilities and byprohibiting in§urers from treating persons with disabilitiesdifferently without actuarial justification.

The National Council remains committed to addressingthe problem of access to health insurance so that the promiseof the ADA may be realized. The Council supportscomprehensive health care reform that offers universal accessto adequate coverage at an affordable cost for all Americans.It believes that any proposal for reform must be designed from

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Persons withdisabilities havefaced an ongoingstruggle to obtainand retain thehealth carecoverage theyneed to liveindependently andproductively.

The NationalCouncil believesthat any proposalfor health carereform must bedesigned from theoutset to meet theneeds of peoplewith disabilities.

About 3 millionpersons withdisabilities have nohealth insuranceand millions morehave inadequatecoverage.

the outset to meet the needs of people with disabilities. Adisability perspective will help us address the fundamentalproblems of our health care system for people with andwithout disabilities, and will therefore benefit all Americans.

I. SCOPE OF THE STUDY

The National Council on Disability is the federal agencyresponsible for advising Congress and the President on publicpolicy affecting people with disabilities. As part of itscontinuing efforts to support independence for persons withdisabilities, the Council commissioned Lewin-ICF to conductthe study entitled "Sharing the Risk and EnsuringIndependence: A Disability Perspective on Access to HealthInsurance and Health-Related Services." The study wasdesigned to identify the major issues of access to healthinsurance and health-related services for persons withdisabilities and to develop recommendations that reflect adisability perspective on how these issues could be addressed.

The findings and recommendations from the study arebased on a comprehensive review of the literature and thetestimony of over 75 individuals who participated in threepublic forums. An Advisory Committee of experts andadve.....ates on disability and health policy also providedvaluable insights during the two-year study. This final reportpresents the findings of the study and the National Council'srecommendations based on those findings. The full study 'savailable upon request.

II. FINDINGS

Throughout the course of its study, the Council wasreminded that access 10 adequate health insurance is aserious problem for persons with disabilities that affects theirability to live independently. An estimated 3 million personswith disabilities-15 percent of the population withdisabilities- -lack any form of health insurance. Millions moredo not have access to adequate health insurance. The studyidentified eight additional findings that illustrate the majorobstacles to accessing health insurance and health-relatedservices.

Finding I:

Persons with disabilities face major hurdles inobtaining adequate private health insurance. Whileabout 60 percent of the population with disabilities has

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private health insurance, this insurance is unavailable ordoes not meet the needs of many others. Privateinsurance often seeks to minimize the risk of seriousillness and, as a result, may exclude persons withdisabilities from coverage. The following are two of themajor reasons private insurance is less accessible topersons with disabilities:

Medical underwriting and preexisting-conditionexclusions restrict access to private insurance forpersons with disabilities and may constitute adiscriminatory practice. These insurance practiceslimit the availability and adequacy of private insurancefor persons with disabilities by allowing insurers torestrict or exclude coverage of individuals with certainhealth conditions or services associated with treatinga specific condition.

The employment-based private insurance systemadversely affects access to private healthinsurance, particularly for individuals withdisabilities who are self-employed or employed bysmall firms. While being employed typically facilitatesaccess to private insurance, it does not guarantee it.Some employers, especially small firms, do not offercoverage. Individuals with disabilities employed insmall businesses that do offer insurance may find thatthey are excluded from their employer's insurancepolicy based on their health status. An employer oftenis unable to obtain insurance for other workers if theperson with a disability is included in the coverage.Self-employed persons with disabilities face extremelyhigh premiums when obtaining private insurance onan individual basis.

Finding 2:

The public health insurance system in the UnitedStates fosters dependence rather than independenceand isolation rather than integration. When unable toobtain private health coverage, persons with disabilitiesseek public insurance. Public health insuranceprograms, however, impose requirements and restrictionsthat, like private insurance, limit access to neededservices, affect decisions about employment, andinfluence the individual's independence.

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Private insuranceoften seeks tominimize the risk ofserious illness and,as a result, mayexclude personswith disabilitiesfrom coverage.

The medical model,on which the U.S.health care systemis fundamentallybased, focuses oncuring andimproving healthstatus and does notadequately considerthe long-termservice needs ofmany people withdisabilities.

Limitations in the range of services covered underpublic programs may require that an individual beinstitutionalized to receive needed services.Medicare and Medicaid cover certain services onlywhen they are provided in specified settings or bydesignated providers. These limitations mean tpersons with disabilities have little choice in how theircare is provided and may be required to enter aninstitution to access needed services. Withoutcoverage for certain services, such as personal care,individuals may require institutionalization.

People with disabilities often forego employmentopportunities in order to maintain public healthinsurance. The eligibility requirements of publicprograms for persons with disabilities are typicallyrelated to an inability to work. If individuals becomeemployed and earn more than a designated amount,they may eventually lose their eligibility for publicinsurance and thus their access to needed services.Despite recent legislation to reduce this workdisincentive, the link between income and accessinduces many persons with disabilities to forego orlimit employment in order to retain insurancecoverage.

Finding 3:

Persons with disabilities feel that their employmentchoices are limited by the availability and adequacyof health insurance. The spirit of the Americans withDisabilities Act is diluted by the lack of adequateinsurance protection. The employment opportunitiesand protections promised by ADA offer little for personswith disabilities whose concern about access to adequatehealth insurance drives their employment decisions,including whether to change jobs or whether to acceptemployment at all.

Finding 4:

The emphasis on acute and episodic care rather thanon prevention and wellness runs counter to the needsand objectives of many persons with disabilities. The"medical model," around which the U.S. health caresystem is structured, focuses on curing and improvinghealth status and fails to consider the long-term serviceneeds associated with many disabilities. Persons with

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disabilities often require ongoing services simply tomaintain the functional ability necessary to pursueindependence. In addition, the onset of both initial andsecondary disabilities could be deterred or avoided ifpreventive services were promoted and available on aregular basis. With the emergence of the newmorbidities," such as acquired immunodeficiencysyndrome (AIDS), substance abuse, environmentalillness, and trauma caused by violence, the availability ofongoing and preventive services will become even moreimportant.

Finding 5:

The range of services covered by insurance istypically limited and often restricts or excludescoverage of many services that are important forpersons with disabilities to achieve independence.Health-related services that help maintain orsubstantially improve an individual's level of functioning,such as assistive devices and personal assistance, arerarely covered by insurance; if these services are covered,the coverage is often restricted in amount, duration, andscope. In addition, the preventive care necessary to avoidthe onset of secondary disability is often excluded fromcoverage.

Finding 6:

International policies toward persons with disabilitiesare geared toward returning individuals to workthrough a combination of health insurance andcomplementary programs of social assistance. Healthpolicies in several countries recognize that medical andhealth-related service needs differ across populations andthat to live independently, persons with disabilities mayrequire services that are not needed by the majority ofthe population. In order to meet these needs, thesecountries often explicitly integrate more traditionalmedical benefits with social assistance programs thatoffer health-related services to ensure a continuum ofcare for persons with disabilities and other specificpopulations. For persons with disabilities in particular,the coordination of systems encourages employment,independence, and community participation.

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Health-relatedservices that helpmaintain or improvean individual'sfunctional capacity,such as assistivedevices andpersonal assistanceservices, are notadequately coveredby most public andprivate insurance.

Enact health carereform designedfrom the outset tomeet the needs ofpeople withdisabilities,including fullportability ofcoverage and abroad scope ofbenefits.

Finding 7:

It is difficult to define precisely the nature and extentof the barriers to health insurance faced by personswith disabilities because estimates of the number ofpersons with disabilities vary and this population isso diverse. The different definitions of disability used bypublic programs and surveys hinder efforts to develop acomprehensive profile of this population or of therelationship between disability and access to healthinsurance. Moreover, the lack of a comprehensive surveyof persons with disabilities makes it difficult to analyzesubsets of the disability population.

Finding 8:

The experience of persons with disabilities providesimportant lessons about the problems faced bymillions of other Americans. Access to healthinsurance for individuals and their families has becomea primary concern for most Americans. The difficultiesin obtaining adequate health insurance that persons withdisabilities experience provide poignant examples of theproblems more Americans will face as health care costsrise and the population ages. Resolving the insuranceproblems of persons with disabilities will likely alleviatesimilar difficulties for millions of other Americans.

III. RECOMMENDATIONS

Changes in both the public ivate insurancesystems are necessary to eliminate the access barriers facedby persons with disabilities. During the course of the studyand three public forums, participants suggested numerousways that access to adequate health insurance for personswith disabilities might be improved. In light of theseperspectives, the Council has developed 22 recommendationsthat focus on strategies to improve both access to andadequacy of health insurance coverage for persons withdisabilities. Together, these measures promote the objectivesof both the disability community and ADA--helpingindividuals achieve equal opportunity and independence.

Recommendation I:

Congress and the Administration should ensure that anyhealth care reform plan adequately meets the needs of

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persons with disabilities, including full portability ofcoverage and a broad scope of benefits.

Recommendation 2:

Congress should enact legislation mandating communityrating for all health insurance plans as a means ofspreading the health insurance risk and reducing thecost of coverage for persons with disabilities.

Recommendation 3:

Congress should enact legislation mandating theelimination of preexisting-condition exclusions andwaiting periods to increase the availability of privateinsurance coverage for persons with disabilities.

Recommendation 4:

Congress should halt discriminatory insurance practicesby enacting legislation prohibiting medical underwritingthat excludes individuals from groups on the basis oftheir health status.

Recommendation 5:

Congress should enact legislation mandating thatinsurance be guaranteed for small groups andindividuals. Such a law would prohibit insurers fromdropping persons from coverage because of deterioratinghealth and would promote portability of coverage.

Recommendation 6:

Congress should enact legislation that regulates annualinsurance premium increases in order to stabilize healthinsurance costs.

Recommendation 7:

Congress should amend the Internal Revenue Code topermit greater deductions for health care, personalassistance, and assistive technology expenses for personswith disabilities.

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The recommenda-tions of theNational Council onDisability aredesigned to offerequal access tohealth insuranceand health-relatedservices for personswith disabilities,and to therebyenhance their abilityto live inde-pendently andproductively in theircommunities.

Reform publichealth insurance toexpand access toMedicare andMedicaid forpersons withdisabilities, and toreduce barriers toemployment forpersons withdisabilities.

Improve arlPquacyof health servicescoverage, andexpand personalassistance optionsavailable to peoplewith disabilities.

Recommendation 8:

Congress should amend the Social Security Act toeliminate the 24-month waiting period for Medicarebenefits to ensure continuity of coverage for qualifiedpersons with disabilities.

Recommendation 9:

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

Recommendation 10:

Congress should expand Section 1619 work incentiveprovisions of the Social Security Act to Medicare. Thiswould reduce employment disincentives for Medicarebeneficiaries.

Recommendation 11:

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

Recommendation 12:

Congress should mandate the expansion of home- andcommunity-based service options to reduce theunnecessary institutionalization of persons withdisabilities in public insurance programs.

Recommendation 13:

Congress should expand access to personal assistanceservices and assistive devices either by earmarking anannual appropriation to the Social Services Block Grant(Title )0C) or by mandating Medicaid coverage. Inaddition, states should be permitted to introduce a buy-in component to programs that provide these services soall persons with disabilities may have access to themregardless of ability to pay.

Recommendation 14:

Congress should establish an Office of the AssistantSecretary for Disability at the Department of Health andHuman Services to ensure a disability perspective in allfuture health care policy.

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Recommendation 15:

Congress should require state and local agencies thatreceive federal funds to support service.s for persons withdisabilities to develop coordinated service delivery plansintegrating health and social services.

Recommendation 16:

The Secretary of the Department of Health and HumanServices should encourage schools for healthprofessionals to develop curricula that educate providersabout the health concerns of persons with disabilities.

Recommendation 17:

The Agency for Health Care Policy and Research shouldencourage those who study treatment effectiveness toconsider outcomes that are relevant to persons withdisabilities.

Recommendation 18:

Congress should direct the Social SecurityAdministration to assess its outreach program forencouraging use of Supplemental Security Income (SSI)work incentives, and to determine why participation islow under Section 1619 and other work incentiveprovisions.

Recommendation 19:

Congress should authorize and fund a consensusconference on developing an acceptable definition ofdisability that could be used as a basis for nationalsurveys.

Recommendation 20:

Congress should require the Bureau of the Census toconduct a survey to determine the extent to whichpersons with disabilities and others lack adequate healthinsurance.

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Develop anintegrated andcoordinated deliverysystem focused onmaintaining health.

Establish aresearch andtraining agenda ofdisability andhealth issues toexpand theknowledge base onaccess to healthinsurance andhealth-relatedservices for personswith disabilities.

Develop a commondefinition ofdisability for surveypurposes and collectdata on all aspectsof health insuranceand health-relatedservices for personswith disabilities.

The recommenda-tions of the NationalCouncil wouldexpand theavailability andaffordability ofhealth insuranceand optimizeindependence forall persons withdisabilities.

Recommendation 21:

Congress should direct the Department of Labor, theSocial Security Administration, and the Health CareFinancing Administration (HCFA), in consultation withthe National Council on Disability, to design a studyassessing the scope and consequences ofunderemployment among the population with disabilitiesthat often results from work disincentives in publicinsurance programs.

Recommendation 22:

Congress should authorize and fund the National Councilon Dis2:oility to commission a study examining the healthconsequences and secondary disabilities that personswith disabilities may suffer because of lack of timely,appropriate treatment.

IV. CONCLUSION

The problems persons with disabilities face in accessinghealth insurance and health-related services are acute. Theythreaten the health and independence of this group andreflect the growing problems that face the general populationin obtaining needed health services. A disability perspectiveon health insurance and health-related services can informthe national health insurance debate by introducing as themeasure of success the ability to maximize individualfunctional potential and independence. Therecommendations of the National Council would expand theavailability and affordability of health insurance and optimizeindependence for all persons with disabilities. Without theseproposed changes, the human potential of millions ofAmericans may be wasted.

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A DISABILITY PERSPECTIVEON HEALTH INSURANCE

" . . . the health insurance system in this nation shouldbe founded on the principle of sharing risk, not on theprinciple of avoiding risk. We are all at risk: the riskof developing a disability or having children withcostly medical conditions. The system we now havepunishes the very people it should be designed toserve. It is a system which . . . caters to the healthyand least needy and seeks to avoid the most needy."

Sandra Swift Pan-ino, former Chairperson,the National Council on Disability

For persons with disabilities, concerns about access toadequate and affordable health insurance drive decisionsabout many aspects of life. Such concerns influencedecisions on occupation, employmt, and livingarrangements. For a woman with multiple sclerosis, theparents of a deaf child, or a man with cerebral palsy, the needfor adequate health insurance may mean choosingunemployment, never marrying, or remaining in aninstitution.

The current health insurance crisis is not new forpersons with disabilities; this population has faced anongoing struggle to obtain and retain the health insurancenecessary to achieve functional potential and independence.While the passage in 1990 of the Americans with DisabilitiesAct (P.L. 101-336) marked an important milestone in theprogress toward equal opportunity in employment andservices, it did riot provide similar opportunity for access tohealth insurance. As a result, access to adequate andaffordable health insurance remains on the policy agenda forthe disability community and the National Council onDisability.

Increasingly, a growing number of Americans withoutdisabilities are finding themselves facing tne same barriers tohealth insurance as those with disabilities. As theseproblems have affected a larger proportion of the generalpopulation, the dissatisfaction with the current health careand insurance system has increased and the urgency toaddress the problems has intensified.

Access to adequate and affordable health insurance is amajor issue on the national policy agenda and is likely to

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Concerns overaccess to healthinsurcu ice influencedecisions onoccupation,employment,and livingarrangements.

A growing numberof Americans findthemselves facingthe same barriers tohealth insurance aspersons withdisabilities.

remain a domestic priority throughout the decade. Thedebate over health care reform has focused on expandingcoverage to the uninsured and containing spiraling healthcare costs. To date, the debate has not incorporated theperspectives of the disability community, even though theexperience of this population clearly highlights theexperiences of millions of other Americans.

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

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BACKGROUND AND INTRODUCTIONTO THE REPORT

As the federal agency responsible for advising Congressand the President on public policy affecting people withdisabilities, the National Council on Disability commissionedthis study on access to health insurance and health-relatedservices for individuals with disabilities to examine the healthcare issues affecting the disability community and to clearlyarticulate its perspective on health insurance.

This report highlights the findings of the two-year studyconducted by Lewin-ICF. These findings were developedthrough a review of the literature and a series of publicforums in which over 75 persons, including consamers,advocates, parents of children with disabilities, health careproviders, insurers, employers, policymakers, and others withan interest in disability policy, shared their views with theCouncil. These findings are the basis for the Council'srecommendations on improving access and implementing adisability perspective on health care reform.

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

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

Recommendations to address the problems identifiedin the findings. The recommendations represent theNational Council on Disability's perspective on accessto health insurance and health-related services firpeople with disabilities.

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(.

The findings of thestudy and therecommendations ofthe National Councilare based on theextensive input ofexperts andadvocates whoaddress issuesconcerning healthcare and disability,including numerouspeople withdisabilities andmembers of theirfamilies.

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The major barrier toaccess to care is thelack of adequateand appropriatecoverage.

"Although ourfamily was able tosecure basic healthinsurance benefits,we wereunsuccessful atobtaining adequatecoverage for ourson's intensivemedical needs."

FINDINGS ON BARRIERS TO HEALTH INSURANCEAND HEALTH-RELATED SERVICES

Access to adequate health insurance is a serious problemfor persons with disabilities and affects their ability to liveindependently. Many persons with disabilities face ongoinghealth care needs, and living without insurance is not a viableoption. Some of these individuals structure their lives aroundsecuring health insurance. Maintaining health insurancecoverage may mean choosing unemployment, living withparents, never marrying, or remaining in an institution.Despite their efforts, an estimated 3 million persons, or 15percent of the population with disabilities, lack any form ofhealth insurance.

For most persons with disabilities, simply havinginsurance is not enough. Many are denied care because theylack adequate and appropriate coverage for needed servicessuch as prescription drugs, rehabilitation, and assistivetechnology. Coverage for these services is often excluded orrestricted, deterring some individuals from receiving neededcare and causing them to to risk serious illness and impairedfunctioning. Examples of the consequences of inadequatecoverage are many:

A woman with hypertension who has no coverage forher prescription drugs and foregoes several days ofmedication because she cannot afford it and is laterhospitalized with a stroke.

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

A man with postpolio syndrome who cannot obtainpersonal assistance and who must be institutionalizedeven though he is able to work and lead anindependent life with assistance.

This study found that persons with disabilities who seekadequate health insurance encounter barriers in the privateand public insurance system, incentives that encouragedependence rather than independence, and a health caresystem that is not designed to meet their needs. Theseobservations are reflected in eight fInd'ngs that support theoverall conclusion of the studythaL access to adequatehealth insurance is a serious problem for people withdisabilities that affects their ability to live independently.

14

tr;

Supporting research and data are found in a supplement tothis report.

Finding 1:

Persons with disabilities face major hurdles inobtaining adequate private health insurance.

Private health insurance is the major source of coveragefor persons with disabilities; over 60 percent of personswith a limitation in their major activity have privatehealth insurance. Despite the large number of personswith disabilities who have private health insurance, thiscoverage remains unobtainable for many in the disabilitycommunity. Private health insurance is becoming aluxury for the healthy as insurers find ways to excludepersons who show any risk of incurring medicalexpenses. In addition, insurers are increasingly reluctantto offer policies to small employers and individualsbecause of concerns about the predictability of expensesamong these groups. In particular, two aspects of privatehealth insurance -- medical underwriting and preexisting-condition exclusions--have impor."-cant, and oftendetrimental, consequences for persons with disabilities.

Medical underwriting and preexisting-conditionexclusions restrict access to private insurance forpersons with disabilities and may constitutediscriminatory practices.

Medical underwriting and preexisting-conditionexclusions limit the availability and adequacy of privateinsurance for persons with disabilities by allowinginsurers to restrict or exclude coverage for individualswith certain health conditions or for services associatedwith treating a specific condition. Medical underwritingis the process by which an insurer selects the risks it will(and will not) insure and determines whether a personwith a disability is "medically uninsurable." Medicalunderwriting permits insurance companies to review anindividual's medical history to determine whether or notthat individual is a good risk in terms of expected use ofhealth insurance. Studies indicate that the list ofconditions excluded from coverage or subject tolimitations has grown longer.

Exclusions on the basis of preexisting conditions are alsoprevalent and problematic for persons with disabilities.

15

"An insurer wouldnot writehomeowner'sinsurance onsomeone whosehouse is on fire, norwould an insurerwant to sell healthinsurance tosomeone as he isentering thehospitaL"

"Preexisting-condition clausesmake it impossiblefor most of us toobtain insurance forour children."

While beingemployed increasesthe likelihood that aperson with adisability will haveaccess to adequateinsurance, it doesnot guarantee it.

Preexisting-condition exclusions are used to reduce aninsurer's expected first-year medical claims expense.While health insurance may be offered to an individualwith a disability, it may not cover a condition that existedprior to the time the indivklual sought coverage. Forexample, a woman with multiple sclerosis may be able toobtain private health insurance, but services related toher multiple sclerosis may be uncovered for a year.Because she cannot remain uncovered for servicesrelated to her disability for an entire year, she maychoose to stay on public insurance. The most commonpreexisting-condition limitations are exclusions forcertain services and waiting periods. Although theseprovisions are legal and are considered by insurers toconstitute sound business practice, they essentiallydiscriminate against persons with disabilities.

These insurance practices make it unlikely that personswith disabilities will be able to obtain private insuranceand suggest that without change some may lose theirprivate coverage. Regardless of past medical claimexperience, many persons with disabilities areautomatically excluded from private insurance based ontheir disability. Others must accept coverage thatexcludes services related to their disability or chroniccondition or hope they remain healthy until the waitingperiod expires. If persons with disabilities are to realizetheir goals of independence and self-sufficiency, changesin private insurance practices must occur.

The employment-based private insurance systemadversely affects access to private healthinsurance, particularly for individuals withdisabilities who are self-employed or employed bysmall firms.

Many persons with disabilities discover that it is difficult,if not impossible, to obtain private health insurance inthe U.S. employment-based insurance system. Whilebeing employed facilitates access to employment-basedinsurance, it does not guarantee it. Some employers,particularly small firms, do not offer insurance. Somepersons with disabilities employed by small businessesthat do oiler insurance may find themselves excludedfrom coverage based on their health status. Smallemployers are often unable to obtain insurance for otherworkers if an employee with a disability is included onthe policy.

16

Self-employed persons with disabilities also facerestricted access to private health insurance. Sine theyare not part of an employer group, self-employedindividuals must seek private insurance from theindividual insurance market. Over time, the individualmarket has become restricted as many insurers havediscontinued their individual policies in an effort tocontrol rising costs. Some individual insurance plansexclude persons with disabilities altogether. Whenindividual coverage is available, it is extremely expensiveand the scope of covered services is typically limited.

Those who are self-employed and do not have access toemployer group coverage have few alternatives. Whilesome may be able to obtain and afford individualcoverage, and some may be able to access privateinsurance through a spouse or parent, others will seekpublic insurance or remain uninsured. Even for thosewho successfully obtain private insurance, there is noguarantee that this coverage will provide the servicesrequired to meet their needs. While the ADA willenhance access to adequate coverage by requiringemployers to offer the same benefit packages to peoplewith disabilities as to other employees and by prohibitinginsurers from treating people with disabilities differentlywithout sound actuarial justification, it will not eliminatethe problem.

Finding 2:

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

When unable to obtain private health insurance, manypersons with disabilities seek public insurance.Together, the federally supported programs of Medicareand Medicaid finance health services for about 5 millionpersons with disabilities. These programs are importantsources of health care coverage that could potentiallyrestore and maintain the health and self-sufficiency ofmany persons with disabilities. However, they imposerequirements and restrictions that, like privateinsurance, limit access to needed services, affectdecisions about employment, and influenceindependence.

17

i;'3

"If you can find anindividual carrierwilling to cover anindividual withdisabilities, the costis outrageous or thedeductibleunbelievable."

"Medicare stipulatesthat in order topurchase awheelchair, thewheelchair be onlyused indoors.Medicare does notsee outdoor use as'medical

justification' forapproving anelectric wheelchair."

"Persons withdisabilities whoenter work while onpublic benefitprograms cannotafford to lose theirlimited healthcoverage and muststay in the eligibilitylimits of theprograms, whichhave fragmentedand complicatedrules."

Limitations in the range of services covered underpublic programs may require that an individual beinstitutionalized to receive needed services.

The coverage restrictions of both Medicare and Medicaidpresent a significant obstacle to independence. Bothprograms cover certain services only when they areprovided in specified settings or by designated providers.Medicare will pay for only certain pieces of durablemedical equipment, and may limit the circumstancesunder which coverage is available (e.g., wheelchairs foruse in the home only). Medicaid has an inherentinstitutional bias whereby certain services are coveredonly in inpatient hospital or institutional settings. As aresult, persons with disabilities are ofteninstitutionalized, rather than kept in the community, inorder to receive necessary health care services. Forexample, all states must cover physical therapy inhospital settings under Medicaid, but physical therapyprovided on an outpatient basis by an independentpractitioner may not be covered. Other services may beprovided in noninstitutional settings only if thealternative setting is cost-effective. Therefore, providingindividuals with services in a home- or community-basedsetting is largely at the program's discretion; there is littleconsideration of an individual's preference or choice.

People with disabilities often forego employment inorder to maintain health insurance through publicprograms.

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

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Finding 3:

Persons with disabilities feel that their employmentchoices are limited by the availability and adequacyof health insurance, and that the spirit of theAmericans with Disabilities Act is diluted by the lackof adequate insurance protections.

As for most Americans, employment is an essentialprerequisite to independence and self-sufficiency forpersons with disabilities. Employment provides anopportunity to achieve personal and professionalsatisfaction and financial independence. Mostindividuals were once able to accept a job or change jobswithout worrying about the availability and adequacy ofhealth insurance benefits. Increasingly, all Americansface the possibility of losing insurance when seeking orchanging jobs. For no group, however, is the decisionabout employment more linked to concerns about healthinsurance than for persons with disabilities.

Under ADA, persons with disabilities may enjoyguarantees against discrimination not only inemployment but also in public services, publicaccommodations, and telecommunications. ADA extendsthe equal opportunity and antidiscrimination measuresestablished in Section 504 of the Rehabilitation Act of1973 beyond agencies or organizations receiving federalfunds. However, while ADA prohibits employers fromdiscriminating against persons with disabilities, it doesnot adequately prevent employers or insurers from usingpractices that limit access to health plans or services forpersons with disabilities. Under ADA, employers andinsurers may not treat individuals with disabilitiesdifferently from those who do not have disabilitieswithout actuarial justification. Employers and insurersmay still engage in restrictive underwriting and coverageif they can justify their practices by sound actuarial data.

While the ability to seek and retain employment is amajor factor in achieving independence for many personswith disabilities, it is clear that employment alone is notsufficient. Seeking and retaining employment is oftendriven by the availability and adequacy of health carecoverage. Persons with disabilities who cannot obtaininsurance coverage from an employer, or who are offeredinsurance that excludes needed services or certainconditions for any amount of time, may find employment

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J t)

"While theAmericans withDisabilities Act isopening doors,current health carecoverage optionsmay be blockingaccess to thosesame doors."

"(Every]employmentdecision I have evermade has beendetermined by thelack of accessible,affordable healthinsurance. I havenot been able tomake oneindependent choice.Any work-relatedexperience I havegotten has takenplace in spite of therestrictions of thesystem."

"True realization ofthe rights nowguaranteed by ADAand other importantpieces of civil rightslegislation,unfortunately, willcontinue to belimited as long aspeople withdisabilities do nothave access to aseamless array oflife, health,personal, andsupport services."

opportunities empty. The discrimination inherent in theprivate insurance system requires persons withdisabilities to shop around extensively for employmentthat provides insurance to meet at least some of theirhealth care needs. Parents and spouses of persons withdisabilities engage in a similar search to find insurancethat will cover their dependents. Insured persons whoare diagnosed with a chronic condition, such as diabetesor heart disease, may find themselves locked in their jobsbecause changing jobs might render them uninsurable.

For persons with disabilities, the alternatives toemployment-based insurance are primarily publicprograms such as Medicare and Medicaid. Persons withdisabilities are eligible for these programs only if theircondition renders them unable to work, as defined byearnings below a certain amount. Individuals thus facethe choice of not working or being underemployed inorder to retain public insurance. Highly educated andskilled persons with disabilities who are unemployed orwho work well below their abilities in order to retainpublic health insurance are not uncommon. If thesealternatives are unacceptable, persons with disabilitiesmust weigh the risks of working with inadequatecoverage or with no coverage at all.

Without adequate insurance coverage, persons withdisabilities are likely to forego employment. For many,the choice is simple. Despite the opportunities fosteredby ADA, continuing insurance discrimination is likely tolimit the law's impact on employment for persons withdisabilities. The unfortunate result of an insurancesystem that requires individuals to risk their health inorder to obtain employment and to sacrifice theirindependence to preserve their health is the lost potentialof millions of Americans.

Finding 4:

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

The American health insurance system has not kept pacewith the changing nature of health and illness. Healthcare is largely viewed from the perspective of the medicalmodel, which focuses on cure and improving healthstatus. Advances in medical technology have prolonged

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productive life for millions of Americans. However, healthservices have not met the challenge of the growingpopulation with chronic and disabling conditions whorequire ongoing services to maintain functioning. Thegoal of health care continues to be curative. Emphasison wellness, preventing disabilities, and promotingindependence is needed.

As the population ages and more people survive withchronic and disabling conditions, the focus of health caremust shift from curative medicine to care that maintainshealth status and maximizes functional capacity Thisshift will require an emphasis on preventive services,rehabilitation, and greater integration among health careprofessionals. The acute care medical model emphasizescurative treatment to restore health following acuteillness or injury. Financing mechanisms reflect thisfocus. They provide coverage for acute episodes ofillness, such as those requiring hospitalization, ratherthan covering health maintenance, long-term care forchronic conditions, or preventive services to avoid theonset of illness or disability.

The private health insurance industry, in general, leanstoward providing medical services for acute health needs,and as a result insurers have an incentive to limit accessto insurance for individuals who present a risk of long-term or high health expenses. Medicare and Medicaidare principally acute care programs. Medicare, forexample, does not cover preventive or wellness care andwill often not pay for ongoing maintenance services.However, persons with disabilities who rely on private orpublic insurance often require long-term services, suchas physical therapy, to maintain an advanced level offunctioning and live independently in the community.

The emphasis on curing and improving health statusoften limits access to services for persons with disabilitiesbecause their needs do not meet 'medical necessity"provisions. Certain services, such as personalassistance, may be critical to sustaining an individual'slevel of functioning, but if no improvement in functionalcapacity results from this service, insurance coveragemay be limited. The traditional medical model alsorepresents a narrow view of health care, failing toconsider the needs of persons with new morbidities, suchas substance abuse, environmental illness, and

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"Essentially, we(persons withdisabilities] seekprograms of healthinsurance thatliberate whileavoiding theoppression ofmedicalmanagement. Wewish to be able toaccess medicalexpertise andcomanage our carewithoutsurrendering ourindependence."

"Unlike the personwithout a disabilitywho has an acutehealth need such asthe occasional flu ora broken leg, aperson with adisability knowsthat his ongoinghealth care needsfundamentally willaffect his quality oflife."

"The orientation ofthe current healthcare system forpeople withdisabilities is onewhich fostersdependency, workdisincentives, andoppression."

"I have beenemployed full timemost of my adult lifeand have hadaccess to grouphealth insurance. Ido, however, haveongoing health-related costs thatare not covered byinsurance, such ashearing aidbatteries, aspirin torelieve my arthritis,and other costs thatare directly relatedto my disabilities."

traumatic injury resulting from violence. With theemergence of these new conditions, the availability ofongoing and preventive services will become even moreimportant.

The underlying paradox is that the success of themedical model has permitted many more individuals tosurvive beyond the acute stages of illness or injury;persons with disabilities and chronic conditions have thepotential to live independently if they can obtain bothtraditional medical and health-related servicesconsistently over time. In addition, the onset of bothinitial and secondary disabilities and a range of newmorbidities could be deterred or avoided if preventiveservices were promoted and available on a regular basis.However, without the availability of nonacute, preventive,maintenance, and rehabilitation services, some personswith disabilities may face deteriorating health andfunctioning that will require repeated episodic reliance onthe acute care system.

Finding 5:

The range of services covered by insurance istypically limited and often restricts or excludescoverage of many services that are important f,rpersons with disabilities to achieve independence,.

The major difficulties of financing health care for mostpersons with disabilities arise not from lack of insurancebut from lack of coverage for certain medical and health-related services that are required for independent living.For example, sign language interpreters, assistivetechnology, and certain therapies are likely to be omittedfrom insurance plans or covered only if certain conditionsare met, such as "medical necessity" criteria or serviceprovision by specified providers. The range of coveredservices and the inclusion of health-related services arekey determinants of the adequacy of health insurance forpersons with disabilities.

Few studies have attempted to document the extent towhich health-related services are covered under privatehealth insurance. Some efforts have been made todetermine whether certain services are offered underemployer benefit plans. The results of these surveysseem to indicate that the majority of employers offercoverage for health-related services, such as medical

22

equipment and supplies, but exclude coverage for manyother types of health-related services, such asrehabilitation or assistive devices. However, the limits onthese services are not well understood or documented,and as health care costs have continued to escalate,employers are further reducing the scope of servicescovered under their insurance plans.

A trend in insurance designed to improve the affordabilityof private coverage is the emergence of "bare bones"benefits, which include coverage for limited services.This trend essentially runs counter to the pressing needsof persons with disabilities because services they arelikely to require, such as prescription drugs, mentalhealth care, and physician services, are restricted oreliminated from coverage altogether.

Medicaid and Medicare appear to be more comprehensivein covering health-related services because of their targetpopulations, but many gaps remain. These publicprograms, like most private plans, were designed to coveracute care services. The services many persons withdisabilities require in order to live independently, such aspersonal assistance and assistive technology, are coveredonly to a limited extent by Medicaid and to an even lesserextent by Medicare.

Medicaid potentially offers the most comprehensive set ofbenefits, covering many services outside the traditionalacute care model. However, states are under noobligation to offer any of the health-related servicesconsidered optional under federal law, except to childrenunder the Early and Periodic Screening, Diagnosis, andTreatment Program (EPSDT). These optional servicesinclude physical therapy; occupational therapy; speech,hearing, and language disorder services; personalassistant services; prosthetic devices; rehabilitation; andtransportation. Furthermore, states are permitted todetermine the scope of services available and to restrictthe amount covered. As a result, a person with adisability who requires ongoing physical therapy in orderto maintain mobility and health may only receive therapyas long as the provider can document an improvement inhealth. Ongoing or chronic care services are typically notcovered.

The Medicare program has not kept pace with thechanging nature of health care or the needs of its

23

The services manypersons withdisabilities requirein order to liveindependently, suchas personalassistance andassistivetechnology, arecovered only to alimited extent byMedicaid and to aneven lesser extentby Medicare.

Internationalcomparisons showbroad coverage forpersons withdisabilities inseveral differentcountries.

beneficiaries. Persons with disabilities receivingMedicare cannot obtain outpatient prescription drugsand needed assistive technology, such as sensory aids,under the program. Medicare will, however, coversurgical treatment for a cochlear implant even though ahearing aid may have been sufficient. Medicare restrictscoverage of wheelchairs for home use and does not coverhandrails or grab bars, which severely limits anindividual's independence and ability to participatein the community. Medicare's inadequacy andinappropriateness for meeting the needs of persons withdisabilities means that many are thwarted in their effortsto achieve self-sufficiency.

Persons with disabilities report that limits on health-related services often prevent them from completing tasksof daily living, participating actively in their community,or maintaining employment, and are thus a majorobstacle to independence. When needed services are notcovered, many persons with disabilities may pay for themout-of-pocket. Others may simply do without. As aresult, the health and functional capacity of thesepersons may erode.

Finding 6:

International policies toward persons with disabilitiesare geared toward returning individuals to workthrough a combination of health insurance andcomplementary programs of social assistance.

International comparisons offer a different perspective onhealth insurance and disability. An assessment of thehealth policies in Canada, Germany, and the Netherlandsrevealed that these countries recognize the differentmedical and health-related service needs of variouspopulations, and that persons with disabilities mayrequire several services to live independently that are notneeded by the majority of the population. In order tomeet these needs, each of the three countries hasintegrated more traditional medical benefits with socialassistance programs. The coordination of these systemsensures a continuum of health and social services forpersons with disabilities and other specific populations,and also emphasizes the link between health andemployment as a means of promoting healthy andproductive citizens.

24

All three of the countries operate federal or federal-stateassistance programs distinct from the health insurancesystem. These programs provide services not coveredunder the general health care system to individuals withdisabilities and other persons with special needs. Therationale for these separate systems is that the healthbenefits available to the general population needn't be ascomprehensive as the benefits for persons with specialneeds. As the United States develops its own approachto health insurance, it must determine whether to makecertain services available at all and whether to includethese services as part of the health insurance system oras a distinct but complementary system. This decisionmust be made within the context of an aging populationin which the number of those with chronic and disablingconditions is increasing.

International comparisons illustrate an aggressiveprogram of benefits designed to return persons withdisabilities to work. The Vocational Rehabilitation forDisabled Persons Act in Canada, the German 1974Rehabilitation Act, and the General Disability BenefitsAct in the Netherlands all cover a range of services,including rehabilitation and assistive devices for anyperson with a disability who requires these services inorder to work, regardless of income status. Public socialand health assistance programs in the United States, incontrast, are based on income standards that limit anindividual's ability to work and do not provide servicesoriented to returning individuals to work.

In the countries studied and in others with universalhealth insurance, many of the access barriers to healthinsurance and services are alleviated by guaranteeingthat all individuals have access to a basic set of healthbenefits, 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 personswith disabilities. These needs are met by complementarysocial assistance programs that appear to fill some of thegaps in coverage and facilitate employment. While thesesystems inevitably have some shortcomings, especiallyrelated to the adequacy of basic coverage and access tolong-term care, they are, nevertheless, important modelsfor consideration.

25

In several countries,health care andother socialprograms arecoordinated toprovide servicesoriented to returningpersons to work.

The estimates ofthis population varygreatly becausethere is no commondefinition ofdisability.

The most recent andsweeping definitionof disability is thatof the Americanswith DisabilitiesAct, which focuseson substantiallimitations in one ormore major lifeactivity.

Finding 7:

It is difficult to define precisely the nature and eztentof the barriers to health insurance faced by personswith disabilities because estimates of the number ofpersons with disabilities vary, and this population isso diverse.

Persons with disabilities are a large and diversepopulation. Children with cerebral palsy, a hearing-impaired woman, a mentally retarded young adult, aperson with epilepsy, a blind man, a mentally ill child,and a young woman who uses a wheelchair because ofan automobile injury are all persons with disabilities.Estimates of their number range from 23 million to43 million, with 35 million being the most commonlyused figure.

The estimates vary because there is no commondefinition of disability. Public programs, civil rightslegislation, and household surveys all categorizedisability differently. The lack of a common definitionprevents researchers and policymakers from determiningthe size and scope of the disability constituency, fromidentifying their needs, and from assessing the extent towhich existing programs meet those needs.

The most recent and sweeping definition of disability isthat of the Americans with Disabilities Act. Under ADA,individuals with a disability are defined as (a) having aphysical or mental impairment that substantially limitsthat person in one or more major life activity; (b) havinga record of such a physica: or mental impairment; or(c) regarded as having such a physical or mentalimpairment. An estimated 43 million persons arethought to meet this definition and thus are protected byADA provisions.

Public programs, such as the Social Security DisabilityInsurance Program (SSDI) and the Supplemental SecurityIncome Program (SSI), employ narrower definitions ofdisability. These definitions are designed to limitprogram enrollment and thus program outlays. Thefederal SSDI and SSI definitions focus on a person'sinability to maintain an income. They do not regardimpairments that may affect an individual's ability toconduct other major life activities or to function in the

26

community. Many fewer people are identified as havinga disability under these definitions than under ADA.

These differences in definition make it difficult to derivea reliable estimate of the population with disabilities thatis uninsured or underinsured and the type of barriers tohealth care they face. For example, are barriers toadequate health insurance and health-related servicesgreater for certain age groups or for certain types ofdisabilities? What are the employment characteristics ofpersons with disabilities (e.g., full-time, part-time, firmsize, type of industry), and how do these employmentcharacteristics relate to access to adequate private healthinsurance? Answers to these and other questions wouldprovide much needed information about the relationshipbetween disability and access to adequate healthinsurance.

Understanding the health care needs of persons withdisabilities and the barriers in the current system tomeeting those needs will enable policymakers to fashionsolutions that overcome those barriers. In addition,knowing how many persons with disabilities remainunemployed or underemployed because of concernsabout health insurance could lead to programs thataddress these problems as well. Without a commondefinition of disability, however, it is unlikely that publicprograms can be accurately assessed in terms of theextent to which they provide coverage to those who mightbenefit and meet the needs of those with disabilities.Thus, making appropriate recommendations for changebecomes improbable.

Finding 8:

The experience of persons with disabilities providesimportant lessons about the problems faced bymillions of other Americans.

Access to health insurance for individuals and familieshas become a primary concern for most Americans. Forthe population with disabilities and for a growing numberof others, the problem with the health insurance systemis one of adequacy rather than lack of insurance. Neitherthe current system nor many of the current proposals forchange explicitly address this issue. While effortstargeted at the uninsured may improve access to care forthe uninsured with disabilities, these efforts may not

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"...the health carecrisis in this countrygrows worse eachdriy I have neverenvisioned myselfas a person whocould fall throughthe cracks of thesystem'--if you wereto see my resume,you would probablyagree--and yet thatappears to behappening."

By adequatelyaddressing theproblem of access tohealth insurance forpeople withdisabilities, we arelikely to address theproblem for allAmericans.

result in adequate coverage for the newly insured or thecurrently insured population with disabilities. Withoutefforts to confront insurance discrimination andadequacy, it is unlikely that the current dissatisfactionwith the system will abate.

As the debate moves forward, persons with disabilities,advocates, and others have called attention to theproblems faced by the population with disabilities. Thesedifficulties are faced not only by persons with disabilities,but also by others who may find themselvesunderinsured because of inadequate health coverage anda lack of available and appropriate services. Theperspective, exy2rience, and voice of the population withdisabilities largely underscores the experience of thenation as a whole and provides significant lessons forthose effecting change.

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RECOMMENDATIONS OF THE NATIONAL COUNCIL

The National Council on Disability believes that thecurrent health insurance system does not meet the needs ofpersons with disabilities. Major reform of both the public andprivate insurance systems is necessary to eliminate accessbarriers.

The health insurance debate must be broadened beyondconcerns for financing the expansion of coverage to adiscussion of how health care should be defined and deliveredat a time of emerging new morbidities (e.g., substance abuse,environmental illness, etc.), an aging population, and medicaltechnology that enables many with chronic and disablingconditions to live productive and independent lives. Thevision of the Council is to begin defining the health caresystem in terms of promoting and maintaining the health andoptimal functioning of all Americans.

The Council hopes that health care reform will adequatelyand appropriately address the needs of persons withdisabilities, and its first recommendation reflects thatobjective. However, in the event that this does not occur, theCouncil strongly supports the passage and implementation ofa series of incremental measures that will have a timely andsignificant impact on improving access, as reflected in severalsubsequent recommendations. These initiatives promote theobjectives of the disability community and the Americans withDisabilities Act, helping individuals achieve equal opportunityand independence. Without these proposed changes, thehuman and economic potential of millions of Americans maybe wasted.

The recommendations developed by the Council aredesigned to respond to the study findings and achieve thefollowing five objectives:

Expand access to public and private health insurance.

Reduce barriers to employment.

Improve adequacy of health services coverage.

Develop an integrated and coordinated delivery system.

Establish a research agenda of disability and healthissues.

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The vision of theNational Council isthat we begin todefine our healthcare system interms of promotingand maintaining thehealth and optimalfunctioning of allAmericans.

Changes in both theprivate and publicinsurance systemsare needed toimprove access toinsurance forpersons withdisabilities.

It is essential thatany health carereform proposal bedesigned from theoutset to meet theneeds of peoplewith disabilities.

A. Expand Access to Health Insurance

Access to health insurance is clearly a problem for the3 million persons with disabilities who are currentlyuninsured. Many others with disabilities have been able toobtain health insurance but have had to overcome numerousobstacles in the process. Still others have had to remain onpublic insurance because private insurance was unavailable.Several changes in both the private and public insurancesystems are needed to improve access to health insurance forpersons with disabilities.

1. Comprehensive Health Care Reform

The National Council believes that the health care systemis in need of fundamental and comprehensive reform. Thereare many ways in which such reform can be structured andachieved. The Council does not take a position on anyspecific health care reform plan at this time. However, theCouncil believes strongly that any plan adopted must bedesigned from the outset to meet the needs of people withdisabilities. It therefore makes the following overarchingrecommendation:

Recommendation 1:

Congress and the Administration should ensure thatany health care reform plan adequately meets theneeds of persons with disabilities, including fullportability of coverage and a broad scope of benefits.

It is essential that any health care reform proposal bedesigned from the outset to meet the needs of personswith disabilities. In the past, programs such as Medicareand Medicaid considered disability largely as anafterthought. Consequently, these programs have astrong bias toward acute care rather than the chroniccare and long-term services, including personalassistance services and assistive technology, needed bymany people with disabilities. This bias is difficult tocorrect if it is initially built into a system. It is, therefore,very important that people with disabilities and theirrepresentatives have substantial input in ensuring thathealth care reform proposals meet their needs andincorporate a disability perspective. The NationalCouncil generally endorses the five principles for healthcare reform, including the broad benefit package andconcept of full portability of coverage, adopted by the

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Consortium for Citizens with Disabilities and thestatement of the National Study Group on Health CareSystem Reform and Persons with Disabilities (seeappendix to this report).

2. Private Insurance Market Reforms

Several market reforms would improve the availabilityand affordability of private health insurance for persons withdisabilities. The goals of these reforms are (1) to ensure thatall groups have access to health insurance and that no groupsor individuals within these groups can be denied coverage,(2) to prohibit cancellation of coverag- based on high claimscost, and (3) to establish greater premium stability in thesmall-group insurance market. The combination of thesereforms would help eliminate the discrimination that nowlimits insurance options for persons with disabilities. To beeffective, the six recommendations related to privateinsurance should be enacted simultaneously. The SenateFinance Committee, Senate Labor and Human ResourcesCommittee, and House Committee on Ways and Means havejurisdiction in this area. The six recommendations follow:

Recommendation 2: By mandatingcommunity rating,

Congress should enact legislation mandating health insurancecommunity rating for all health insurance plans as a can become moremeans of spreading the health insurance risk and affordable toreducing the cost of coverage for persons with persons withdisabilities. disabilities.

By spreading the health insurance risk across a largepool, community rating can help provide affordablecoverage to the large number of employer groups andindividuals who are currently uninsured or who face highinsurance costs because of their health status. Thisbenefit is accomplished by pooling many groups andsetting an average premium rate based on their expectedaverage utilization. The disadvantage of communityrating is that it effectively raises the average premium formost people since high-risk persons would now be pooledwith those at lower risk. Community rating would makepremiums more affordable for persons with disabilitieswho often face higher-than-average insurance premiumsor who are excluded from the private insurance marketbecause insurers expect high health expenses.

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To obtain thegreatest benefitfrom communityrating, theEmploymentRetirement IncomeSecurity Act of 1974should be amendedto requirecompliance byself-insuredorganizations.

The elimination ofpreexisting-condition exclusionswould expandaccess to privateinsurance forpersons withdisabilities.

As a business practice, community rating is not new; atone time, it was the norm for many health insurers.Community rating has given way to experience ratingbecause the latter permits insurers to better predict riskand set premiums accordingly. The ultimate effect ofexperience rating has been serious insurance marketfragmentation and self-selection, which has essentiallyexcluded potentially high-risk individuals and groupsfrom access to affordable insurance. In light of thissituation, there is renewed interest in community ratingat both the national and state level, and to date threestates have enacted community rating as a statewidehealth insurance policy for small groups and individuals.The Employee Retirement Income Security Act (ERISA) of1974 permits self-insured firms to be excluded from statemandates. Thus, efforts to move toward communityrating have been limited to the small-group andindividual markets. To obtain the greatest benefit fromcommunity rating, all firms should be included andERISA modified. The Council urges Congress to followsuit by mandating community rating and changingERISA to permit the inclusion of all firms in thecommunity pool.

Recommendation 3:

Congress should enact legislation mandating theelimination of preexisting-condition exclusions andwaiting periods to increase the availability of privateinsurance coverage for persons with disabilities.

These insurance practices are major factors in theexclusion of persons with disabilities from privateinsurance and in the prevalence of insurance plans thatmany in the disability community find inadequate.

By eliminating these restrictive provisions, employerswho offer insurance would have to make the samecoverage available to all eligible employees, regardless oftheir health status. Preexisting-condition exclusions andwaiting periods should be prohibited in conjunction withthe implementation of community rating so that healthinsurance costs do not increase to the point ofunaffordability. Together, these actions can improveboth access to and affordability of private insurance forpersons with disabilities.

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Recommendation 4:

Congress should halt discriminatory insurancepractices by enacting legislation prohibiting medicalunderwriting that excludes individuals from groupson the basis of their health status.

Like preexisting-condition exclusions and waitingperiods, medical underwriting restricts access to healthinsurance on the basis of health status. Insurers oftenwill not write polices for small groups without medicalunderwriting in order to better predict and control thehealth care costs for the group. As a result, individualswith disabilities may find the availability of insurance --and therefore employment opportunities--with smallemployers limited because insurance is a key factor intheir employment decisions. Prohibiting the use ofmedical underwriting that excludes individuals from agroup does not address the adequacy of availableinsurance. It does, however, help improve insuranceavailability by further limiting the practice of excludingon the basis of health status.

Recommendation 5:

Congress should enact legislation mandating thatinsurance be guaranteed for small groups andindividuals. Such a law would prohibit insurers fromdropping persons from coverage because ofdeteriorating health and would promote portabilityof coverage.

Insurers should be required to have open enrollment forboth small groups (i.e., employers with fewer than 25employees) and individuals, and to provide coverage toall those who apply regardless of health risk. In addition,neither insurers nor employers should be permitted toexclude individuals from group coverage, even if theypresent high medical risks. Once insured, neither anindividual nor a group should be denied continuedcoverage because of deteriorating health. Theseprovisions will help ensure that persons with disabilitieshave continuity of coverage and do not have to fear lossof insurance when considering employmentopportunities.

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Prohibiting medicalunderwriting woulddiscouragediscriminatoryinsurance practicesaffecting personswith disabilities.

Guaranteedinsuranceavailability andrenewability reducethe fear of acceptingor changing jobs.

Regulations on themanner of annualpremium increasesmay enable mcresmall employers tooffer healthinsurance.

Recommendation 6:

Congress should enact legislation that regulatesannual insurance premium increases in order tostabilize health insurance costs.

It is not unusual for small employers to face three-foldincreases in annual insurance premiums. Theseincreases are the result of an insurance practice knownas "durational rating" by which insurers raise premiumsover time as preexisting-condition exclusions thatinitially generated savings expire. Premiums can beexpected to rise sharply at each subsequent renewalwhen preexisting-condition exclusions lapse and also asthe benefits of medical underwriting erode over time. Inorder to stabilize health insurance costs, insurers shouldbe required to limit the rate of annual premium increasesrelative to other groups insured by the same carrier.These limits would typically guarantee that a group payno more for basic coverage than a percentage of theaverage cost of similar groups (i.e., similar demographics,geography, benefit design, and industry).

Recommendation 7:

Congress should amend the Internal Revenue Code topermit greater deductions for health care, personalassistance, and assistive technology expenses forpersons with disabilities.

a. Congress should amend the Internal RevenueCode to permit self-employed persons withdisabilities to deduct the full cost of purchasinghealth insurance from their income taxes.

Even for persons without disabilities, nongroup healthinsurance tends to be very expensive and often limited inthe scope of covered services. While employed personswho work for a business benefit from spreading the riskacross the employees group, self-employed individuals donot have such an advantage. In addition, both employerswho provide health insurance and employees whocontribute to the cost of that insurance are permitted todeduct the full cost of their contribution from their grossearnings when determining their taxable income. Self-employed persons are permitted to deduct only 25percent of the cost of insurance. For persons withdisabilities who typically face higher individual '-tealth

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insurance costs, this 25 percent deduction provides littlerelief. Amending the tax code to permit self-employedpersons with disabilities to deduct 100 percent of theirhealth insurance costs would promote more self-employment opportunities for this population. It alsomay make resources available to pay out-of-pocket forservices that insurance does not cover.

b. Congress should amend the Internal RevenueCode to permit persons with disabilities to deduct100 percent of their health-related expenses fromtheir income tax liability.

Persons with disabilities typically face higher medicalexpenses because of higher insurance premiums, and agreater need for medical and health-related services thatmay not be covered under private or public insurance.Currently, only blind persons may deduct the full cost ofexpenses related to their disability from their income taxliability; others may deduct only the amount of medicalexpenses that exceeds 7 percent of their adjusted grossincome. Amending the tax code to allow all persons withdisabilities to deduct the full cost of medically relatedexpenses, including the cost of personal assistanceservices and assistive technology, would help many ofthem afford services related to their disabilities becausethese expenses would be offset by a reduction in taxes.Obtaining these services rather than forgoing orpostponing them because of the out-of-pocket expensemay help prevent the future onset of secondary disabilityand help an individual maintain an achieved level offunctioning. If this recommendation were enacted, itwould not be necessary to increase the tax deduction forself-employed persons with disabilities since they wouldbe encompassed in this proposal.

3. Public Health Insurance Reform

The large numbers of persons with disabilities receivingMedicare and Medicaid suggest that reforms within the publicinsurance system could have a significant effect on access toneeded services and could encourage independence.Jurisdiction for changes in public health insurance lies withthe House Committee on Ways and Means, the HouseSubcommittee on Health and the Environment (Committee onEnergy and Commerce), and the Senate Finance Committee.

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Amending the taxcode to allow allpersons withdisabilities todeduct the full costof medically relatedexpenses, includingthe cost of personalassistance servicesand assistivetechnology, wouldhelp many of themafford servicesrelated to theirdisabilities.

Eliminating thewaiting period forMedicare wouldimprove continuityof coverage.

A Medicaid buy-inwould reduceemploymentdisincentives forpersons withdisabilities.

Recommendation 8:

Congress should amend the Social Security Act toeliminate the 24-month waiting period for Medicarebenefits to ensure continuity of coverage for qualifiedpersons with disabilities.

The 24-month waiting period for Medicare following thereceipt of SSDI benefits is a particular problem forpersons with disabilities who risk deteriorating healthduring that period in the absence of other coverage.Despite the extension of the Consolidated OmnibusBudget Reconciliation Act's (COBRA) continuationcoverage provision for 29 months for employment-basedinsurance, more than one-quarter of SSDI recipients areuninsured during the last six months of the waitingperiod. This situation is due in part to the limited impactof the COBRA extension because the premiums formaintaining employment-based coverage as an individualare very high. Eliminating the waiting period forMedicare would allow persons with disabilities who haveongoing health service needs to obtain those services ina timely fashion and would preempt potential secondaryconditions that might otherwise occur.

Recommendation 9:

Congress should mril1/4.s.te a Medicaid buy-in forpersons with disabilities in order to reduceemployment disincentives.

States currently have the option of implementingMedicaid buy-in programs under which persons canobtain Medicaid coverage by paying a premium that maybe subsidized by the state. Requiring states toimplement the buy-in would improve the availability ofthis source of insurance for the many persons withdisabilities who are uninsured because their incomes aretoo high to meet Medicaid eligibility, but who cannotafford private insurance. A buy-in program available ona sliding-scale premium regardless of income, such as isoffered in Massachusetts, would allow persons withdisabilities who are currently uninsured to obtaincoverage.

The Medicaid buy-in can have other importantimplications. Persons with disabilities who are currentlyreceiving Medicaid report that they often turn down

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employment because the insurance coverage, if available,would be insufficient to meet their needs as well asMedicaid does. Under a Medicaid buy-in, many personswith disabilities would likely seek and obtain employmentnot otherwise accessible to them because of unavailableor inadequate insurance. The buy-in could also permitemployers to pay the premium on behalf of eligibleemployees. The advantages of such provisions includepotential savings to the SSI program as people achieveeconomic 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 expandingemployment opportunities to persons with disabilities,additional initiatives are necessary in the health insurancearena to ensure that employment opportunities are indeedviable. The most serious barriers to employment exist in thepublic health insurance programs as work disincentives thatforce individuals to choose between access to health servicesand employment. Recommendation 10 represents animportant reform that moves toward alleviating barriers toemployment faced by persons with disabilities. Jurisdictionfor this recommendation is within the Senate FinanceCommittee and the House Committee on Ways and Means.

Recommendation 10:

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

Like Medicaid, Medicare limits earning levels for itsbeneficiaries with disabilities. Permitting earnings abovethe substantial gainful activity level with an offset inSSDI cash benefits while allowing persons withdisabilities to maintain Medicare coverage could helpreduce SSDI expenditures and encourage economic self-sufficiency.

C. Improve Adequacy of Health Services Coverage

The major health care issue for persons with disabilitiesis access to adequate health insurance coverage. Improvingthe availability of health insurance will give some personswith disabilities coverage they would not have otherwise.

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The Medicaid buy-incould serve as animportant incentiveto work for peoplewith disabilities.

Extending Section1519 provisions toMedicare wouldreduce employmentdisincentives forMedicarebeneficiaries.

Systematic changesin the orientation ofhealth servicescoverage arenecessary to meetthe needs of peoplewith disabilities andencourage theirindependence.

Medicare benefitsmust be reassessedto better meet theneeds of personswith disabilities.

However, the extent of coverage, in terms of benefits and costsharing, may not be sufficient to meet their needs and doeslittle to foster self-sufficiency. The Council believes thatsystematic changes in the orientation of health servicescoverage are necessary to ensure that available benefits meetthe needs of persons with disabilities and encourage theirindependence. Reforms in the scope of health servicescoverage will influence and support needed changes in thedelivery system, particularly the move from an acute caremedical model toward ongoing services aimed at keepingcitizens healthy and productive. The Senate FinanceCommittee, the House Committee on Ways and Means, theHouse Subcommittee on Health and the Environment, andthe House and Senate Appropriations Committees havejurisdiction over the recommendations that follow.

Recommendation 11:

Congress should revise the Medicare benefit structureto better meet the needs of beneficiaries withdisabilities.

The Medicare program provides health insurance to over3 million persons with disabilities. original intent ofthe program was to finance health care° for the elderly,but the 1972 amendments to the Social Security Actrevised Medicare's scope to include persons withdisabilities. Yet Medicare has not effectively respondedto the needs of this broader constituency. Medicareprogram benefits remain largely oriented to the needs ofthe elderly. In particular, Medicare does not coveroutpatient prescription drugs and has very restrictedcoverage for durable medical equipment. Wheelchairs,for example, are available only for use in the home. Fora working-age person with a disability who needs awheelchair, this provision impedes independence andparticipation in the community.

In order to better meet the needs of beneficiaries withdisabilities, the Medicare benefit structure should bereassessed from the perspective of those beneficiariesand subsequently amended. The review should examinethe extent to which Medicare recipients require servicesnot currently covered under the program, such ascommunication devices, or covered with restrictions,such as durable medical equipment. Considerationshould be given to services that, if provided in a timelyand appropriate manner or on an ongoing basis, could

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limit the need for repeated hospitalizations orinstitutionalization. If the revisions focus on fosteringindependence and health, the entire Medicare populationwill benefit from the change.

Recommendation 12:

Congress should mandate the expansion of home- andcommunity-based service options to reduce theunnecessary institutionalization of persons withdisabilities in public insurance programs.

Medicaid has an inherent institutional bias that preventssome persons with disabilities from obtaining coverageunless they are institutionalized and that disallows someservices unless they are provided in an institutionalsetting. Home- and community-based services allowindividuals to be served in the community rather than ininstitutions. Over the past few years, the opportunity forstates to provide home- and community-based servicesunder Medicaid has expanded considerably. Most stateshave taken advantage of Medicaid waiver programs toprovide home- and community-based services, and in1990, these services became optional under Medicaid.However, the current options are largely restricted byenrollment ceilings, funding caps, and the requirementthat states demonstrate the cost-effectiveness ofproviding these services in lieu of institutionalization. Asa result, the availability of home- and community-basedservices is limited even for those individuals who wouldlikely benefit from them. If coverage of home- andcommunity-based services were mandated and somerestrictions on reimbursement for these services wererelaxed, many more people could benefit from receivingthem in a noninstitutional setting.

Recommendation 13:

Congress should expand access to personal assistanceservices and assistive devices either by earmarkingan annual appropriation to the Social Services BlockGrant (Title XX) or by mandating Medicaid coverage.In addition, states should be permitted to introducea buy-in component to programs that provide theseservices so all persons with disabilities may haveaccess to them regardless of ability to pay.

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Home- andcommunity-basedservices allowindividuals to beserved in thecommunity ratherthan in institutions,and should beavailable in allstates.

Broad availability ofpersonal assistanceservices andassistive technologywill lead to greaterindependence andproductivity forpersons withdisabilities.

Personal assistance services, including personalattendants, interpreters, and readers, are currentlysubject to many limitations - -if covered at all- -underpublic insurance. These services are rarely covered byprivate plans. Coverage of assistive technology, such ascommunication devices and motorized or customizedwheelchairs, is also typically restricted. Persons withdisabilities report that this lack of coverage is a majorobstacle to their independence. Without personalassistance and assiFtive devices, many persons may needinstitutionalization - -often their only alternative toobtaining comparable services necessary for maintainingtheir health.

Two programs may be used to expand access to personalassistance services and assistive devices: Medicaid andTitle XX, the Social Services Block Grant. Covering somepersonal assistance services is currently optional underMedicaid; about 25 states have adopted this option. Butthe Medicaid benefit is limited in scope and does notadequately meet the needs of persons requiring personalassistance. States can specify the scope and duration ofthe benefit; thus, the comprehensiveness of the benefitdepends on where a person lives. Also, personalassistance services are subject to medical necessitycriteria, which limits the benefit. Moreover, theseservices are limited to those required inside the home.Medicaid does not pay for personal assistance servicesoutside the home.

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

A second program option is the Social Services BlockGrant, or Title XX. Several of the goals of these grants--tofurnish services to promote self-sufficiency and reducedependency, and to prevent and reduce inappropriateinstitutional care--could be met more fully if states wereallotted a sum of money specifically for personalassistance services and assistive technology. Statescurrently use Title )0( dollars to provide a range ofspecial services for persons with disabilities; however,states allocate Title XX dollars to these services at their

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discretion because the block grant is designed to addressa variety of needs. By earmarking monies for personalassistance and technology, states can establish programsto provide these services and be assured of an annualbudget. In addition, because states can adopt a buy-into these programs, persons with disabilities who haveinadequate insurance coverage may obtain neededbenefits from the Title )0-1. program on an income-basedsliding scale. This provision promises the program anadditional source of revenue. The Social Services BlockGrant offers greater flexibility for personal assistancethan Medicaid.

Expanding personal assistance services could have far-reaching benefits. The availability of personal assistanceand assistive technology will reduce hospitalization andinstitutionalization 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 wouldresult in their depleting their resources to become eligiblefor Medicaid. The burnout experienced by familymembers who act as personal assistants for loved oneswith disabilities could be alleviated because theseprograms could offer alternative support. Finally, butperhaps most important, many persons with ciAsabilitieswould be able to seek and maintain employment and livemore independent and productive lives because theseservices would help them attain self-sufficiency.

D. Develop an Integrated and Coordinated DeliverySystem

The current medical delivery system has been shaped bya financing structure and financial incentives that value theprocess of restoring health more than the process ofmaintaining it. For persons with disabilities, this objectivemeans that their ongoing, long-term needs are neglected, andthey may be forced to sacrifice health and independence inorder to access the system. Some services may be covered ifrendered by specified providers or in particular settings, butit may be difficult to find such a provider who is sensitive tothe concerns of persons with disabilities. As a result of thissystem, persons with disabilities must negotiate a maze ofbureaucratic, structural, architectural, and attitudinalbarriers in order to obtain the array of services they require.Some reorganization of the delivery system is necessary to

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The availability ofpersonal assistanceand assistivetechnology willreducehospitalization andinstitutionalizationfor many personswith disabilities.

Reorganization ofthe delivery systemis needed topromote healthstatus goals.

Persons withdisabilities currentlymust negotiate amaze ofbureaucratic,structural,architectural, andattitudinal barriersin order to obtainthe array of servicesthey require.

ensure that persons with disabilities have access to theservices they need.

By reorienting the delivery system to consider the overallhealth of the community in the long run, the health careneeds of persons with disabilities and the community-at-largecould be met more appropriately. Providers would beencouraged to coordinate care for patients on anindividualized basis, ensuring that a continuum of neededservices is available to keep the individual healthy andproductive. People would be empowered to participate indecisions about the types of services or providers that bestmeet their needs and expectations. While this thrust towardpromoting health and independence reflects the goals of thosewith disabilities, it also benefits the general population bycreating a healthy community for all. The House Committeeon Ways and Means, the Senate Labor and Human ResourcesCommittee, the House Committee on Education and Labor,and the House and Senate Appropriations Committees havejurisdiction in the areas of these recommendations.

Recommendation 14:

Congress should establish an Office of the AssistantSecretary for Disability at the Department of Healthand Human Services to ensure a disability perspectivein all future health care policy.

Currently, there is no federal official at the assistantsecretary level accountable for ensuring that the needs ofpeople with disabilities are addressed in federal healthpolicy. The only assistant secretary with responsibilitysolely for disability issues is at the Department ofEducation's Office of Special Education andRehabilitation Services (OSERS), which has no primaryjurisdiction over health care issues. While there areseveral offices and agencies at the Department of Healthand Human Services (DHHS) that address disabilityissues--including the Administration on DevelopmentalDisabilities (ADD), the Social Security Administration(SSA), the Health Care Financing Administration (HCFA),and the National Center for Medical RehabilitationResearch (NCMRR)--there is no subcabinet-level positionresponsible for coordinating disability issues in healthpolicy. To ensure the incorporation and coordination ofa disability perspective in health policy, the NationalCouncil strongly recommends the establishment of anOffice of the Assistant Secretary for Disability at DI-IHS.

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Recommendation 15:

Congress should require state and local agencies thatprovide federally funded services for persons withdisabilities to develop coordinated service deliveryplans integrating health and social. services.

Under the current system, social service programs andhealth service programs tend to operate distinctly anddisjointedly. Vocational rehabilitation, mental health andmental retardation, housing, and transportationprograms are administered separately from each otherand distinct from the health system. The level ofseparation varies within and among states. The result ofthis fragmentation is a complex web of programs that aredifficult to coordinate to meet the multifaceted needs ofpersons with disabilities and others. In particular,health system gaps that might be addressed by otherprograms, such as home care services funded by theSocial Services Block Grant, often go unmet becauselinkages are lacking. For many persons with disabilities,the missing and lack of knowledge about availablesupport services create one more obstacle toindependence.

Congress should facilitate linkages by requiring state andlocal agencies that receive federal funds to establish aplanning and implementation process for coordinateddelivery of social and health services for persons withdisabilities. The agencies administering these programsshould include vocational rehabilitation; health services;employment and training; housing and transportation;and independent living; among others. Overall systemobjectives of achieving independence and communitycommitment should be established. Such integrationmay reveal a wealth of resources heretofore untapped byor unknown to persons in need and can ensure that acontinuum of services is available to fill in gaps incoverage and to promote health and independence.

Recommendation 16:

The Secretary of the Department of Health andHuman Services should encourage schools for healthprofessionals to develop curricula that educateproviders about the health concerns of persons withdisabilities.

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Greater integrationof health and socialservices willpromote health andindependence, andthis could beachieved throughthe creation of anew Office of theAssistant Secretaryfor Disability atDHHS.

Programs offeringsocial services suchas health care,vocationalrehabilitation,employment andtraining, housing,transportation, andindependent livingmust be bettercoordinated to meetthe needs of peoplewith disabilities.

Providers should beeducated to provideeffective health carefor persons withsevere disabilities,to help them preventsecondarydisabilities and tomaintain andenhance theirhealth andfunctional capacity.

In order to better serve the population with disabilities,health-professional training should include trainingabout disabilities. Model curricula should be developedand distributed to help educate future providers abouthealth concerns of people with disabilities and theirpursuit of independence. Providers should beencouraged to learn how to examine and provide servicesto persons with severe disabilities. Sensitization will notonly improve providers' skills in serving populations withdisabilities, but may also encourage providers to be moreaccessible to persons with disabilities.

Such a curriculum _should be an integral component ofa broader educational approach to providers of healthservices that includes curing, restoring, and maintainingfunctional capacity. By studying the needs of personswith disabilities and the importance of ongoing servicesto maintain health, providers may gain insight andperspective on their role in promoting health outcomes inthe larger community.

E. Establish a Research Agenda of Disability and HealthIssues

The findings from this study reveal that much isunknown about the characteristics of persons with disabilitiesand their access to health insurance, such as costs by healthcare category associated with specific chronic conditions anddisabilities, figures on access to insurance by chroniccondition and disability, and costs of personal assistance andassistive technology associated with different chronicconditions and disabilities. The Council recommends a seriesof studies be undertaken to help alleviate this informationgap. The Senate Subcommittee on Disability Policy, theHouse Committee on Ways and Means, and the House andSenate Appropriations Committees have Jurisdiction in thisarea.

Recommendation 17:

The Agency for Health Care Policy and Researchshould encourage those who study treatmenteffectiveness to consider outcomes that are relevantto the population with disabilities.

Outcomes research and the study of the effectiveness ofmedical treatments typically do not consider relativeeffectiveness for those with disabilities. By focusing on

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particular medical or health outcomes as a measure ofeffectiveness, a treatment or service may be deemedineffective for persons with disabilities even though theoutcome measure used was inappropriate for them. Forexample, a study might be designed to explore theeffectiveness of physical therapy as measured byreturning persons to work and may conclude thatphysical therapy is not an effective treatment for somepersons with disabilities. However, had the measure ofeffectiveness been improvement in ability to completeactivities of daily living, the finding might have been thatphysical therapy is quite effective for those withdisabilities. Incorporating functional outcome andquality of life measures that are meaningful to thepopulation with disabilities will help ensure that findingsof effectiveness are relevant to them.

The Agency for Health Care Policy and Research can helppromote an understanding of the importance offunctional outcomes by encouraging that studies oftreatment eficctiveness conducted under its auspicesintegrate functional outcome measures and quality of lifeindicators.

Recommendation 18:

Congress should direct the Social SecurityAdministration to determine why participation is lowunder Section 1619 and other work incentiveprovisions, in order to develop and implementprograms that will encourage use of SSI workincentives.

Section 1619 of the Social Security Act became apermanent provision in 1986 under the EmploymentOpportunities for Disabled Americans Act. Section 1619is a work incentive program that allows SSI recipients toearn an income above the SSI "substantial gainfulactivity" level, receive a special SSI payment, andmaintain Medicaid coverage. Despite this relaxation ofincome limits for SSI and Medicaid eligibility, few personswith disabilities take advantage of Section 1619 or otherSocial Security work incentive provisions. The majorreasons for low participation appear to be a lack ofinformation about the provision and a belief that workingwill disqualify one from coverage.

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Studies should beconductedincorporatingfunctional outcomeand quality of lifemeasures that aremeaningful topeople withdisabilities.

The Social Securitywork incentiveprovisions offermany persons withdisabilities theopportunity foremployment and astep towardindependence, andefforts should bemade to expand theuse of theseprovisions.

A consensusconference isneeded to develop astrategy andmethodology for alongitudinal studyon disability,examining a widearray of variablesaffecting peoplewith disabilities.

In order to address these issues, the Social SecurityAdministration has implemented an outreach campaignduring the past few years; yet, it is unclear whether thiseffort has effectively increased participation in Section1619. The Social Security Administration should assessits current outreach efforts to determine their impact onparticipation and to identify alternative outreachapproaches that might better encourage eligible personswith disabilities to participate. The assessment shouldconsider whether there are particular features of thework incentive program that discourage participation,rather than simply a lack of information andunderstanding about the program. Section 1619 and theother work incentive programs offer many persons withdisabilities the opportunity for employment and a steptoward independence. Every effort should be made toimprove their accessibility to eligible persons withdisabilities.

Recommendation 19:

Congress should authorize and fund a consensusconference on developing an acceptable definition ofdisability that could be used as a basis for nationalsurveys.

The lack of a common definition of disability has maderesearch and policy decisions related to the populationwith disabilities confusing and difficult. Congress shouldauthorize a consensus conference to be conducted underthe auspices of the National Council on Disability. Theconference would provide a forum for researchers,policymakers, disability advocates, and others to developa strategy for designing a survey that identifies andtracks the population with disabilities. This meetingwould be an opportunity to introduce the most currentthinking 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 utilizingthese measures would provide a better understanding ofhow the population with disabilities changes over timeand would facilitate the development of future surveystargeted specifically at this population.

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Recommendation 20:

Congress should require the Bureau of the Census toconduct a survey to determine the extent to whichpersons with disabilities and others lack adequatehealth insurance.

The Bureau of the Census should be required to conducta national study in conjunction with the National Councilon Disability to determine the extent to which people lackadequate health insurance. To date, there have been fewattempts to assess how well insurance meets the healthcare needs of individuals. Determining the level ofadequate coverage is critical to developing appropriatepriorities and policies that address the gaps in healthinsurance affecting the health and independence ofmillions of Americans. The study should attempt tooversample the population with disabilities who might beexpected to have inadequate health insurance. Effortsshould also be made to capture the service areas that areunlikely to be covered by insurance as well as the level offinancial risk (e.g., levels of cost sharing, maximumbenefit levels) and out -of- pocket expenses incurredbecause of insurance shortfalls.

Recommendation 21:

Congress should direct the Department of Labor, theSocial Security Administration, and the Health CareFinancing Administration, in consultation with theNational Council on Disability, to design a studyassessing the scope and consequences ofunderemployment among the population withdisabilities that often results from work disincentivesin public insurance programs.

These organizations, in consultation with the Council,should construct a study to assess the extent to whichpersons with disabilities receiving SSDI and Medicareand SSI and Medicaid are employed below their level ofability or skills. These individuals are consideredunderemployed. There is subs+ anecdotal evidencethat many persons with disabilities work less than full-time to ensure that their earnings do not exceed theincome limits of SSDI and SSI, which would result in theloss of medical benefits. Other individuals may obtainlow-skilled or low-paying jobs for which they areoverqualified in order to work and still meet income

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Better data areneeded on allaspects ofdisability, includinghealth care costsand utilization,access to healthinsurance, anddisincentives towork associatedwith access toinsurance, toenhance the qualityof decisionmakingon disability policy.

Access to healthinsurance andhealth-relatedservices willsubstantiallyimprove the qualityof life of people withdisabilities and willenhance theirabilities to liveindependently andprod, ictively

eligibility requirements. However, no formal study ofthese issues has been conducted. Such a study shoulddetermine how many program participants areunderemployed, 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 howthese federal programs could be better designed tominimize work disincentives and to promote theproductivity and independence of persons withdisabilities by supporting their health service needs.

Recommendation 22:

Congress should authorize and fund the NationalCouncil on Disability to commission a studyexamining the health consequences and secondarydisabilities that persons with disabilities may sufferbecause of lack of time17, appropriate treatment.

Americans with disabilities find that the acute careorientation of the health care system fosters deteriorationof health until serious medical services are required.Preventive services directed at maintaining health aretypically not covered by private or public insurance, eventhough lack of these services may cause eroding healthand secondary disability in some. Many in the disabilitycommunity believe that ongoing maintenance services,such as physical therapy and personal assistance, canhelp keep an individual healthy and active, and canprevent the onset of further debilitating conditions. It isalso believed that providing services to prevent the onsetof secondary disability is cost-effective. These issuesneed further exploration. A well-designed study shouldexamine the extent to which persons with disabilitiesexperience secondary disability and other healthconditions that might have been avoided with timelytreatment.

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NATIONAL COUNCIL MEMBER AND STAFF BIOGRAMIES

National Council Members

John A. Gannon, Acting Chairperson

John Gannon of Cleveland, Ohio, and Washington, D.C., foundedJohn A. Gannon and Associates. His firm has offices in Columbus andCleveland, Ohio; Denver, Colorado; and Washington, D.C. A fire fighter formore than 30 years, Mr. Gannon was an active leader of the InternationalAssociation of Fire Fighters (IAFF) Local 93. Starting as a member of the localIAFF committee, he eventually became president, a position he held for10 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 andhealth. Concerned about the hazards of his profession, he guided and directeda series of programs to promote greater safety and health protection. Oneprogram sponsored research on safer garments and equipment for fire fighters.Mr. Gannon also fostered development of the IAFF Burn Foundation, whichraises funds for research on the care of people who have experienced severeburns. In 1985, the Metropolitan General Hospital in Cleveland dedicated aJohn Gannon Burn and Trauma Center in recognition of his support for thehospital.

Mr. Gannon was elected vice president of the AFL-CIO, with which theIAFF is affiliated. Within the AFL-CIO he is vice president of the PublicEmployee Department. On the Executive Council, he is a member of severalcommittees. He serves on the board of the National Joint Council of FireService Organizations and in 1982 served as its chairman. He is a member ofthe board of the Muscular Dystrophy Association. Mr. Gannon attended MiamiUniversity in Ohio and Glasgow University in Scotland, and studied atBaldwin-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 whileplaying football for Texas Christian University. Since 1981, Mr. Waldrep hasserved on the National Council by presidential appointment. He is NationalCouncil vice chairperson and chairman of the Research and Prevention

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Committee. He was instrumental in formulating the National Council initiativeon preventing primary and secondary disabilities.

Mr. Waldrep, one of 15 original drafters of the Americans withDisabilities Act, gave the legislation its name. He has lectured nationwide onsubjects ranging from national disability policy to medical research targeted atcuring paralysis. He founded the American Paralysis Association and the KentWaldrep National Paralysis Foundation. He has appeared on Good MorningAmerica, the Today Show, the NBC Nightly News, and CNN, and been featuredin People, Look USA Today, and other magazines.

He was selected by the U.S. Jaycees as one of 1985's ten OutstandingYoung Men in America and received a special award from the Texas Sports Hallof Fame and a sports/fitness award from the President's Council on PhysicalFitness. Kent Waldrep Days have been celebrated in four Texas cities andBirmingham, Alabama. He serves on many boards, including the TexasRehabilitation Commission. He is past chairman of the Texas Governor'sCommittee for Disabled Persons and the Dallas Rehabilitation Institute. Healso is chairman of Turbo-Resins, Inc., a family-owned and -operated aviationrepair business. He lives in Plano, Texas, with his wife Lynn and two sons, Treyand Charles Cavenaugh.

Linda Wickett Allison

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

Ellis B. Bodron

Ellis Bodron of Vicksburg, Mississippi, has been a practicing attorneysince 1947. He served 36 years as a member of the Mississippi legislature, oneterm 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

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University of Mississippi Alumni Association. In addition, he is a member of theAdvisory Board of Directors, Deposit Guaranty National Bank.

Mr. Bodron has also been a member of the Agriculture and IndustrialBoard, which preceded the Board of Economic Development, and theCommittee of Budget and Accounting and Board of Trustees of the MississippiPublic Employees Retirement System.

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

Larry Brown, Jr.

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

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

After retiring from football in 1977, he worked at E.F. Hutton as apersonal financial management adviser. He has been special assistant to thedirector, Office of Minority Business Enterprise, Department of Commerce. Heis involved with youth, people with disabilities, and senior citizens. Mr. Brownhas spoken at schools, colleges, and universities on topics such as motivation,discipline, and camaraderie. He works with many organizations, including theFriends of the National Institute on Deafness and Other CommunicationDisorders, the Deafness Research Foundation, and the Vincent LombardiFoundation.

Mary Ann Mobley Collins

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

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Mrs. Collins helped raise funds for the Willowood Foundation in hernative Mississippi, which provides homes for young adults with mental andphysical learning disabilities. She has received many awards and honors,including the 1990 International Humanitarian Award from the Institute forHuman Understanding, Woman of Distinction 1990 from the NationalFoundation for Ileitis and Colitis, and the HELP Humanitarian Award of 1985from HELP for Handicapped Children. She has filmed documentaries inCambodia, Ethiopia, Mozambique, Somalia, Kenya, Sudan, and Bolivia on theplight 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'sAid of Greater Norwalk and has worked with the Child Guidance Center ofGreater Bridgeport, the Youth Shelter in Greenwich, Hall Neighborhood Housein Bridgeport, ar. _ the Urban League of Greater Bridgeport. Mr. Flack is amember of the Allocations and Admissions Committee, United Way of Norwalk,and received the Bell Award for outstanding service in the field of mental healthat the Bridgeport Chapter, Connecticut Association of Mental Health.

John Leopold

John Leopold of Pasadena, Maryland, has 18 years' experience in electedstate office. He was elected to the Hawaii State House of Representatives in1968 and was re-elected in 1972. In 1974, Mr. Leopold was elected to theHawaii State Senate. In 1982, he became the first Republican in Marylandhistory elected from District 31 in Anne Arundel County to the Maryland Houseof Delegates, where he served until 1991.

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

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

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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 anadjunct professor in the Department of Psychology at Aquinas College and inthe Department of Education at Calvin College in Grand Rapids. He serves onthe board of trustees for Hope Network and Foundation in Grand Rapids,which serves 1,700 adults with disabilities. In April 1981, he received anhonorary degree in educational psychology from the Free University inAmsterdam, the Netherlands.

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

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

George H. Ober le, P.E.D.

Dr. George Ober le of Stillwater, Oklahoma, has more than 40 years'experience in the field of health, physical education, and recreation. He beganhis career as a high school teacher and coach, and has been a professor anddirector of the School of Health, Physical Education and Leisure at OklahomaState University since 1974. Dr. Ober le is a consultant to many organizationsin the area of administration and adaptive physical education. In 1988, heworked with the Kennedy Foundation to organize and direct a new program ofUnified Sports for the Special Olympics.

Dr. Ober le 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 memberof the American Alliance of Health, Physical Education, Recreation and Dance(1985-89). Awards include the 1985 Centennial Award from the American

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Association of Health, Physical Education, Recreation and Dance; andMeritorious Service Awards from Indiana and Oklahoma.

He was selected for Men of Achievement in 1975 and recognized in Who'sWho of the Southwest in 1977. Dr. Oberle received his doctorate from IndianaUniversity in administration and adapted physical education. He lecturesextensively about wellness promotion, adapted physical activity, sports, andrecreation for people with disabilities.

Sandra Swift Parrino

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

During her tenure as chair, the National Council worked for the creationand enactment of legislation for people with disabilities; issued a policystatement, National Policy for Persons With Disabilities; convened hearingsnationwide to solicit comments and recommendations from people withdisabilities about how to eliminate discrimination; issued a major report,Toward Independence, that outlines key components of a comprehensive civilrights law protecting people with disabilities; initiated the first national surveyof attitudes and experiences of Americans with disabilities, in conjunction withLouis Harris and Associates, Inc.; issued On the Threshold of Independence, areport outlining specifics of the Americans with Disabilities Act; created anddeveloped the Americans with Disabilities Act; participated with PresidentBush at the signing of the Americans with Disabilities Act; conducted the firstNational 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, andeducating students with disabilities.

Before becoming National Council chair, Sandra Parrino founded anddirected the Office for the Disabled. in Ossining and Briarcliff Manor, NewYork, where she created a regional program for public and privateorganizations that focused on programs for people with disabilities andcompliance with 504. She has more than 25 years' experience on boards,councils, commissions, committees, and task forces at the federal, regional,

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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 inmany countries. She has been invited by the Department of State to representthe United States at the Meetings of Experts in Finland and China, andrepresented the United States at the United Nations Center for SocialDevelopment in Vienna several times. In 1990, 1991, and 1992 she was adelegate 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 intheir efforts to help people with disabilities. At the request of the government ofCzechoslovakia, she and the National Council were invited to conduct theEastern European Conference on Disabilities for participants fromCzechoslovakia, Poland, and Hungary.

Mrs. Parrino graduated from Briarcliff College with a B.A. in history, andcompleted courses at Bennett College, Guild Hall School of Drama in London,and the Yale School of Languages. In 1992, Mrs. Parrino received an HonoraryDoctorate of Humane Letters from St. John's University in New York. Herhusband Richard is a rheumatologist. They have three children, two of whomhave disabilities. Sandra Parrino was born in New Haven, Connecticut, andlives in Briarcliff Manor, New York.

Mary Matthews Raether

Mary Raether of McLean, Virginia, is associated with St. John's ChildDevelopment Center, a nonprofit organization providing instruction,employment training, and independent and group home living skills for peoplewith severe mental disabilities, especially autism. Mrs. Raether has been anofficer and trustee of St. John's since 1985, has chaired the public relationscommittee, and participated on the executive, nominating, investment, anddevelopment committees.

Mrs. Raether has been active in civic, educational, and religiousorganizations in the Washington metropolitan area. While community vicepresident of the Junior League of Washington, she developed emergency grantprocedures and fund-raising information services for small and emergingnonprofit organizations. Mrs. Raether has 10 years' experience as legislativeassistant to Reps. George Bush and Barber Conable. She specialized in tax,social security, medicare/medicaid, and trade issues. She considers her effortsin clarifying the tax status of lobbying by nonprofit organizations anoutstanding career accomplishment. She received a B.A. from the University ofTexas at Austin in 1962. She is married and has two children.

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Anne Crellin Seggerman

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

A member of the Bridgeport Urban Gardens and Youth atRisk/Breakthrough Foundation, Mrs. Seggerman founded and serves as thechairman of the board of the Fairfield County Chapter of Huxley Institute forBiosocial Research. She previously was a member of the President's Committeeon Mental Retardation.

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

Mrs. Seggerman is experienced in providing care, treatment, andrehabilitation to people with schizophrenia and has extensive experience withalcoholics and children with learning disabilities. She is married and has sixadult children.

Michael B. Unhjem

Michael Unhjem of Fargo, North Dakota, is president of Blue Cross BlueShield of North Dakota. He is the youngest person ever elected to the NorthDakota House of Representatives, a member of the National Conference ofCommissioners on Uniform State Laws, and he served in 1988 as president ofthe 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 Healthand Human Services; the Governor's Commission on Mental Health Services;the National Alliance for Research on Schizophrenia and Depression; and theNational Mental Health Leadership Forum. Awards include the 1989 SpecialPresidential Commendation from the American Psychiatric Association, the1988 Distinguished Leadership Award from the North Dakota PsychologicalAssociation, and the National Excellence in Leadership Award from NorthDakota.

He has been recognized by Who's Who in American Politics, Who's Who inNorth Dakota, Who's Who in the Midwest, Personalities of America, and Men of

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Achievement. Mr. Unhjem graduated magna cum laude with a B.A. in historyand political science from Jamestown College in North Dakota in 1975. In1978, he earned a J.D. with distinction from the University of North DakotaSchool 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 theRehabilitation Institute of Chicago, the largest U.S. rehabilitation center. Shehas been involved in disability advocacy for many years and has beenassociated with the Institute of Rehabilitation Medicine at the New YorkMedical Center, where she served as associate trustee. She has served as vicepresident, president, and chairman of the board of Rehabilitation InternationalUSA.

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

National Council Staff

Andrew I. Batavia

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

After law school, Mr. Batavia served for two years as an attorney for theU.S. Department of Health and Human Services. He left that position in 1986when he was awarded the Mary E. Switzer Distinguished Research Fellowshipin Medical Rehabilitation Finance from the National Institute on Disability andRehabilitation Research (NIDRR) of the U.S. Department of Education. He thenserved for four years as associate director for Health Services Research at theNational Rehabilitation Hospital Research Center in Washington, D.C. In that

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capacity, he wrote 2 books and more than 20 other publications on issues ofdisability and health care policy.

In 1987, Mr. Batavia was made a Fellow of the Washington Academy ofSciences. In 1988, he was awarded the Distinguished Disabled AmericanAward from the President's Commission on Employment of People withDisabilities. In 1989, he received an International Fellowship from theInternational Disability Exchanges and Studies (IDEAS) Program of NIDRR, andconducted research on how the Dutch Health Care System affects people withdisabilities. In 1990, he was appointed a White House Fellow by PresidentBush and served as special assistant to Attorney General Richard Thornburghat the U.S. Department of Justice.

Mr. Batavia is the founding associate editor of the Journal of DisabilityPolicy Studies and a cofounding board member of Independent LivingAssistance, Inc. He is an adjunct assistant professor at the GeorgetownUniversity School of Medicine and a member of the Bar of the U.S. SupremeCourt, the Bar of the District of Columbia, the State Bar of California, andGeorgetown's Kennedy Institute of Ethics.

Billie Jean Hill

Billie Jean Hill joined the staff of the National Council on Disability asprogram specialist in March 1992. Previously, Ms. Hill was director ofcommunications and editor for the Blinded Veterans Association and earlierserved as founding director of a statewide broadcast service for persons withreading disabilities with Mississippi Educational Television in her home state.She was appointed to work on a governor's commission in Mississippi to reporton the needs of children and youth In rural Mississippi who are disabled.Ms. Hill studied journalism and education at Mississippi Unive-:3ity for Womenand at the University of London in England. She serves as chairperson of theBoard 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 onDrug-Free Schools. He is a former program coordinator at the U.S. InteragencyCouncil on the Homeless and former director of communications at the WhiteHouse Conference on Small Business. Mr. Quigley graduated magna cum laudein 1979 from Northern Virginia Community College in Annandale, Virginia,with an A.A. in general studies. He received a B.A. in government and politicsin 1983, and an M.P.A. in public administration in 1990 from George MasonUniversity in Fairfax, Virginia.

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i;

Brenda Bratton

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

Stacey S. Brown

Stacey Brown is staff assistant to the chairperson and has beenemployed by the National Council since 1986. Prior experience includesemployment as a receptionist and clerk with the Board for InternationalBroadcasting and with the Compliance and Enforcement Unit of theArchitectural and Transportation Barriers Compliance Board, where he was astudent assistant. Mr. Brown is a graduate of Howard University inWashington, 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 NationalCouncil, was formerly employed with the National Oceanic and AtmosphericAdministration. Ms. Mack graduated from Calvin Coolidge High School.

Lorraine Williams

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

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wU

Consortium forCitizens withDisabilities

CONSORTIUM FOR CITIZENS WITH DISABILITIESHEALTH TASK FORCE

"PRINCIPLES FOR HEALTH CARE REFORMFROM A DISABILITY PERSPECTIVE"

December, 1993(updated February, 1993)

ON BEHALF OF:AIDS Action CouncilAlliance for Genetic Support GroupsAmerican Academy of Physical Medicine and RehabilitationAmerican Association for Counseling and DevelopmentAmerican Association of University Affiliated ProgramsAmerican Association on Mental RetardationAmerican Civil Liberties UnionAmerican Congress of Rehabilitation MedicineAmerican Foundation for the BlindAmerican Occupational Therapy AssociationAmerican Physical Therapy AssociationAmerican Psychological AssociationAmerican Speech-Language-Hearing AssociationThe Arc, Association for Retarded Citizens of the United StatesEpilepsy Foundation of AmericaImmune Deficiency FoundationInternational Association of Psychosocial Rehabilitation ServicesLearning Disabilities AssociationNational Alliance for the Mentally IllNational Association fur Music TherapyNational Association of Developmental Disabilities CouncilsNational Association of Medical Equipment SuppliersNational Association of Private Residential ResourcesNational Association of Protection and Advocacy SystemsNational Association of Rehabilitation FacilitiesNational Association of State Mental Retardation Program DirectorsNational Council for Independent LivingNational Council of Community Mental Health CentersNational Easter Seal SocietyNational Head Injury FoundationNational Mental Health AssociationNational Multiple Sclerosis SocietyNational Organization for Rare DisordersNational Parent Network on DisabilitiesNational Recreation and Parks AssociationNational Rehabilitation AssociationNational Transplant Support NetworkSpina Bifida Association of AmericaThe Association for Persons with Severe DisabilitiesUnited Cerebral Palsy Associations, Inc.World Institute on Disability

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PRINCIPLES FOR HEALTH CARE REFORM FROM A DISABILITY PERSPECTIVE

FROM THE HEALTH TASK FORCE OFTHE CONSORTIUM FOR CITIZENS WITH DISABILITIES

INTRODUCTION

The organizations represented in CCD's Health Task Forceappreciate the opportunity to express our priorities for healthcare reform from a disability perspective. The time is ripe tosharpen the debate for national health care reform. The Consortiumfor Citizens with Disabilities is a working coalition comprised ofover 75 consumer, service provider, and professional organizationswhich advocate on behalf of persons with disabilities and theirfamilies. This statement is presented on behalf of 41 nationalorganizations who comprise the overwhelming majority of CCD HealthTask Force members. The more than 43 million Americans withdisabilities include individuals with physical and mentalimpairments, conditions, or disorders, severe acute or chronicillness which limit or impede their ability to function.

Such disabilities may occur as a result of disease, injury,sudden trauma, aging, or congenital anomaly. One of the reasonsfor the passage last year of the historic Americans withDisabilities Act was to finally recognize not only the existenceand importance of these millions of American with disabilities, butalso to ensure their individual civil rights.

When one considers the number and range of individuals coveredby the definition of disability, it is no wonder that the issue ofaccess to appropriate, adequate, and affordable health care andrelated support systems is of such critical important to the CCD.In fact, while 43 million is the official number cited for personswith disabilities, the CCD believes that, in actuality, this numberis an under-estimation. Therefore, it is also no wonder that anydiscussion of reform of the nation's health care system mustinclude not only the generic consumer perspective but also theunique perspective of consumers with disabilities. It is thebelief of the CCD that addressing the disability perspective in thecurrent health care reform debate will ultimately benefit allAmericans.

In considering the issue of health from the disabilityperspective, it is essential to re-focus our conception of whatbeing "healthy" really is. For so many people with disabilities,health is determined by functional capacity. It is the ability tomaintain or increase this functional capacity that is often themeasure of the person with disabilities' opportunity to live anindependent life and participate as fully as possible in the lifeof the community. True realization of the rights now guaranteed bythe ADA and other important pieces of civil rights legislation,unfortunately, will continue to be limited as long as people withdisabilities do not have access to a seamless array of life-longhealth, personal, and support services.

2

The CCD had determined that any effort to reform the nation'shealth care system must be built on five basic principles: non-discrimination, comprehensiveness, appropriateness, equity, andefficiency. Only in this manner can we ensure that national healthcare reform efforts take into consideration the needs of Americanswith disabilities.

PRINCIPLES

The CCD believes that any ultimate solution to the health carecrisis must be based on the principle of non-discriminationensuring that people with disabilities of all ages and theirfamilies have the opportunity to fully participate. The CCD woulddefine a successful health care system as one that offers acomprehensive array of health, rehabilitation, personal, andsupport services, as well as a system that ensures that theseservices are appropriate in that they are provided on the basis ofeach individual's need, personal choice, and situation. Inaddition, any truly effective solution must be equitable ensuringthat no group of individuals bears a disproportionate burden.Finally, the CCD asserts that an effective and accessible healthcare system must be efficient ensuring that system resources areutilized to meet health care needs. The CCD strongly supports theright to health care for all persons regardless of income or healthstatus.

Non-Discrimination: People with disabilities of all ages and theirfamilies must be able to fully participate in the nation's healthcare system.

People with disabilities are often discriminated against inthe health insurance marketplace because they are presumed to behigh health care users. In fact, most people with disabilities arenot sick. Nevertheless, private insurers use medical underwritingpractices which are designed to ensure that high users of healthcare are charged higher premiums, subjected to preexistingcondition exclusions, or rejected totally as an "unacceptablerisk". Discrimination occurs when a sizeable proportion of peoplewith disabilities, who are actually low users of health care, aredenied insurance or subjected to preexisting condition exclusions.Discrimination also occurs when high users of health care aredenied adequate coverage because they cannot afford the premiums orare subjected to limitations on covered services. From adisability perspective, the very practice of experience-rating,which ensures that premiums are set on the basis of previousutilization, is a form of unfair discrimination against high users.

Access to health care for individuals with disabilities cannotbe considered in a vacuum. Historically, discrimination on thebasis of disability has limited opportunities in employment,education, housing, travel, and other aspects of daily life. Now,with rights guaranteed in so many of these areas by the passage ofthe Americans with Disabilities Act and other important civil

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rights legislation, there is a growing realization in thedisability community that access to health care is a major barrierthat threatens to interfere with the attainment of these rights.The CCD believes that the present inability of a substantialproportion of people with disabilities to participate in thenation's health care system at a level which meets their needs is adirect reflection of the continued misperception of both the skillsand needs of people with disabilities. Non-discrimination requiresthat the health care financing system:

prohibits pre-existing condition exclusions;prohibits rating practices that discriminate against

higher users of health care;ensures that all persons, regardless of income or

health status, have access to the all needed healthrelated services;

provides access without regard to age, race, place ofresidence, or the characteristics of persons withwhom one maintains family relationships;

ensures continuity and portability of coverage.

Comprehensiveness: People with disabilities and their familiesmust have access to a health care system that ensures acomprehensive array of health, rehabilitation, personal, andsupport services across all service categories and sites of servicedelivery.

The CCD asserts that an effective and comprehensive healthcare system, one that is responsive to the needs of people withdisabilities, would provide a seamless array of life-long healthrelated services. Comprehensiveness implies the broadest set ofservices that assist individuals with disabilities and theirfamilies to achieve and sustain optimum physical and mentalfunction. The terms "health, rehabilitation, personal, and supportservices", used by the CCD, refers to a universe of servicesdelivered by a range of practitioners in a variety of sites andillustrates the necessary breadth of a health care delivery systemthat is truly accessible to people with disabilities. Over thecourse of a lifetime, all people commonly require a broad array ofhealth, rehabilitation, personal, and support services. However,access to the entire array of these services must be ensured forpeople with disabilities. Often it is the availability of theseservices that can determine their ability to live independent livesand fully participate in the community. Moreover, adequate accesscan prevent exacerbation of a small health problem into a largermore costly health problem. People with disabilities would mostbenefit from a health care system that includes access to:

preventive services, including services to prevent theworsening of a disability

health promotion/education servicesdiagnostic servicesinpatient and outpatient physician serviceshospital inpatient and outpatient care

e

4

long and short term home and community-based serviceslong term care in medical facilitiesprescription drugs, biologicals, and medical foodsmental health, counseling, and substance abuse serviceshabilitation servicesrehabilitation services, including audiology,

occupational therapy, physical therapy,psycho-social services, respiratorytherapy, speech-language pathology services,cognitive, vision, and behavioral therapies, andtherapeutic recreation

personal assistance services and independent livingservices

durable medical equipment and other assistive devices,equipment, and related services

Appropriateness: People with disabilities and their families mustbe assured that comprehensive health, rehabilitation, personal, andsupport services are provided on the basis of individual nee4,_preference, and choice.

Particular attention must be placed on the appropriateness ofavailable services. It is of critical importance to the disabilitycommunity that full involvement of the "consumer" is assured in alldecisions affecting the selection of service, service provider,service timing, and service setting. CCD is concerned that certainforms of managed care create an incentive for under-serving peoplewith disabilities and often utilize gate-keepers who are notknowledgeable about the special health care needs of people withdisabilities.

The issue of consumer choice and participation has aparticular importance for persons with disabilities. While thepresent acute-care oriented health care system has a tendency torelegate all "consumers" to a dependent status embodied in the"sick role", this indignity is particularly disempowering to peoplewith disabilities when their chronic health conditions arepermanent. That is why the health related services for personswith disabilities must be delivered in a way that minimizesinterference with normal activities, and that health care financingpolicies which govern access to health care for persons withchronic conditions must be sensitive to issues of locus andcontrol.

It is essential that decisions about health care servicesreflect personal preference and maximum benefit to the individualrather than provider and service setting availability, cost-containment goals, or coverage limits. CCD asserts that meaningfulaccess to health care involves the right of the individual consumerto participate in the decision-making process regarding theprovision of needed services and to be educated so appropriateself-care is possible.

In addition, CCD strongly believes that people withdisabilities must be involved in policy decisions that will guide

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the nation's health care system. An appropriate health care systemis one which:

includes consumer participation;ensures consumer choice in relation to services and

provider;ensures a range of service settings through an

integrated delivery system;ensures appropriate amount, scope, and duration of

services;ensure the availability of trained personnel.

Equity: People with disabilities and their families must beensured equitable participation in the nation's health care systemand not burdened with disproportionate costs.

The CCD asserts that equal access to health services will notbe readily achievable unless payment for health, rehabilitation,personal, and support services is equitably distributed r that noindividual or public or private sector interest is burdened with adisproportionate share of the cost. Because of cost issues, toooften people with disabilities and their families have beenrequired to make unfortunate choices between needed health servicesin appropriate settings and what they can afford. These types ofchoices obviously do not reflect the principles of non-discrimination, comprehensiveness, and appropriateness of services.Health care reform must ensure that people have access to servicesbased on health care need and not on their employment status orincome level. As a group, people with disabilities have lowerincome than the general population and many adults withdisabilities and families with members with disabilities devote adisproportionate share of their income to health care anddisability related services. An equitable health care system wouldbe one which:

limits out of pocket expenses and cost sharingrequirements for participant-;

provides access to services based on health care needand not on income level or employment status;

ensures adequate reimbursement for serviceproviders;

Efficiency: People with disabilities and their families must haveaccess to a health care system that provides a maximum ofappropriate effective quality services with a minimum ofadministrative waste.

The CCD is concerned that the current fragmentary system hasfailed to achieve effective cost controls, or a rational allocationof health resources, and contributes to substantial administrativewaste. It is estimated that more than 20 percent of health careexpenditures are attributed to administrative costs as 1,500private health insurers require different forms of provider

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documentation to trace every claim for reimbursement to theutilization by a specific individual with his or her own healthinsurance plan. In addition, the fragmentary system hascontributed to the growth of excess capacity in the health caredelivery system, inviting cost shifting, and undermining efforts toachieve effective cost controls. This has reinforced pressures forarbitrary cost containment by limiting coverage in ways that oftenadversely affect persons with disabilities.

Moreover, health care financing policy has not evolved muchbeyond acute care, failing to respond to the growing need forpreventive care and for chronic health care management which couldsignificantly reduce the growth of preventable diseases.

An efficient health care system is one that:

reduces administrative complexity and minimizesadministrative costs;

allocates resources in a more balanced way betweenpreventive services, acute care, rehabilitation,and chronic care management;

ensures the delivery of effective services;maintains effective cost controls so that all people can

get the health care services which they need.

Based on these "principles" from a disability perspective, CCD isreviewing all the health reform legislation before the Congress andsubmitting assessments of these bills as they are completed.

CONCLUSION

The disability community needs to be a major player in reexamininghealth care financing policy. People with disabilities are highlyvulnerable to the limitations of both public and private systems asthey are squeezed between a private system which is designed tocharge accordingly to an assessment of risk and a public systemwhich subsidizes health care according to age, poverty status,family structure, and an inability to work.

Private health insurance was developed and has remained a methodfor spreading risk of incurring excessive costs primarily forhospital and physician services. For individuals withdisabilities, access to health care has been severely restrictedbecause of preexisting conditions and the mistaken assumption thatmost people with disabilities need more hospital and physician carethan the population as a whole. Health care reform needs toeliminate this restriction and assure access to needed hospital andphysician services. Equally as important, the tradition oflimiting covered services to hospital and physician services mustbe changed. Rehabilitation services, personal and support

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services, mental health services, and assistive technology must berecognized as essential components of health care.

Perhaps our greatest contribution will be in clarifying theprinciples which should guide our health care system. Theseinclude: (1) expanding the definition of "health" to includeprevention services, rehabilitation therapies, assistivetechnology, and on-going health-related maintenance services; (2)

distributing all health related expenses equitably throughout thepopulation; and (3) restructuring our health care delivery systemto more effectively support consumer-directed chronic caremanagement.

For more information, please contact any of the CCD Health TaskForce Co-chairs:

Bob Griss, United Cerebral Palsy Associations, 1522 K Street, N.W.,Suite 1112, Washington, D.C. 20005, telephone: (202) 842-1266.

Kathy McGinley, The Arc, formerly the Association for RetardedCitizens of the United States, 1522 K Street, N.W., Suite F16,Washington, D.C. 20005, telephone: (202) 785-3388.

Janet O'Keefe, The American Psychological Association, 750 FirstStreet, N.E., Washington, D.C. 20002, telephone: (202) 336-5934

Bill Schmidt, Epilepsy Foundation of America, 4351 Garden CityDrive, Landover, Maryland 20785, telephone: (301) 459-3700.

Steve White, American Speech-Language-Hearing Association, 10801Rockville Pike, Rockville, Maryland 20852, telephone; (301) 897-5700.

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2 IMPROVING SERVICE SYSTEMSFOR PEOPLE WITH DISABILITIESINDEPENDENT LIVING RESEARCH UTILIZATION

2323 S. Shepherd, Suite 1000 Houston, Texas 7701917131 120-0232 TDD (713) 520.5136 FAX (713) 520-5785

Statement of Principle of the National Study Groupon Health Care System Reform and Persons with Disabilities

Excerpted from the Preliminary Report of the Study Group

LEX FRIEDENProgram Director

LAURA W. SMITHDepuProgramDuector

KYM KINGC.:mmuntca:ns Director

On December 3-4, 1992, ILRU, with funding provided by the Robert WoodJohnson Foundation, assembled several of the foremost experts in the countryon the health care needs of persons with disabilities. The group includedmembers representing the broad range of political thought, including membersof the Bush Administration, Clinton campaign, researchers, educators, serviceproviders, and consumers.

Recognizing that the current time represents the greatest opportunityfor substantial health care system reform in several decades, the group'smission was to contemplate (1) essential components of health care systemreform that address the needs of persons with disabilities, including personswith chronic health conditions, and (2) potential strategies for promotinginclusion of such components in legislative initiatives around health caresystem reform.

The primary overriding conclusion of the study group was that the needsof persons with disabilities must be a primary consideration at the outset ofthe design of any health care system reform initiative. Historically,disability issues have been addressed as an afterthought in most health carereform--including passage of Medicare and Medicaid. This historical fact hascontributed to situations of forced dependency for many persons withdisabilities at great cost to society both in terms of direct care dollars andreduced participation of such individuals in their communities, states, andnation. Any health care system reform initiatives should seek to amelioratesuch situations, resulting in savings to society and improved qualities oflife for everyone.

The primary focus of existing health care programs has been on acutecare services, rather than on preventive and supportive services designed tominimize the need for more costly acute care services. This focus hasrequired incremental modifications and adaptations that have been difficult toincorporate into programs that were not designed to meet the needs of personswith disabilities.

Now more than ever before, with the aging of the population, with ourincreased capabilities to save and prolong the lives of persons who experiencedisabling disease and trauma, and with the knowledge that prevention andhealth maintenance services are much less costly than acute care services, itis essential that the needs of persons with disabilities receive greatattention in the design of any health care system reform package.

The study group strongly endorses the five principles of health caresystem reform for persons with disabilities articulated by the Coalition ofCitizens with Disabilities (CCD). The system as a whole must be: (1) non-discriminatory, ensuring that people with disabilities of all ages and their

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families have the opportunity to participate fully in the system; (2)comprehensive, providing an array of health, rehabilitation, personal, andsupport services; (3) appropriate, offering services on the basis of eachindividual's need, personal choice, and situation; (4) equitable, ensuringthat no group of individuals bears a disproportionate burden; and (5)efficient, ensuring that system resources are applied effectively in meetinghealth care needs.

Furthermore, these principles are consistent with a more rational planfor service delivery that should be developed as an integral component of costcontainment. It must be recognized that any cost containment measures-including local budgeting, imposition of deductibles and co-payments, andrestrictions on services--are likely to have a disproportionately adverseeffect on persons with disabilities. Therefore, any health care reformproposal that contains cost contairment provisions must be constructed in amanner that does not place an unduE burden for such provisions on individuals

who are most likely to use services at above average rates.

A major consideration in the design of a health care system reform planthat meets the needs of people with disabilities is the benefit package.Again the study group endorses the broad package principles outlined in theCCD statement. These benefits, which include access to preventive,rehabilitative, and long-term services, are needed by persons withdisabilities to maintain productive, independent lifestyles. At the sametime, the group recognized that economic realities strongly influence theavailability of services for all individuals, not just persons withdisabilities.

Therefore, it is imperative that people with disabilities, along withindividuals representing other segments of the population, be activelyinvolved in the design of the benefit package and its administration. Top-

down decision making, such as occurred with the Oregon Plan, without adequateinput from the disability community is likely to result in the devaluation ofthe needs of people with disabilities, a program that inadequately addressesthese needs, and ultimately greater costs to individuals with disabilities andsociety as a whole.

Now is a time of change for the system of health care as we know it.There is much to be learned from the empowerment principles which guided theefforts of the disability rights movement. One of the most importantcontributions persons with disabilities can make to the health care systemreform debate is to provide input to redefine the concept of health and theway in which persons participate in the management of their health care needs.We all deserve to work together toward a system that better meets the needs ofall people. Incorporating key features of the CCD position statement, theStudy Group supports a health care system reform initiative that is based onempowerment and education of all persons and that. (1) expands the definitionof "health" to include prevention services, rehabilitative therapies,assistive technology, and ongoing health-related maintenance services; (2)distributes all health-related expenses equitably throughout the population;and (3) restructures our health care delivery system to support effectiveconsumer-directed health care management.

National Council on Disability800 Independence Avenue. SWSuite 808Washington, D.C. 20591

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