Making Health Care Reform Work for

Americans with Disabilities

Summary Information on Five "Town Meetings"

on Health Care Reform: A Report to the President and the Congress of the

United States

NATIONAL COUNCIL ON DISABILITY

 
July 26, 1994

Making Health Care Reform Work for

Americans with Disabilities

Summary Information on Five "Town Meetings"

on Health Care Reform: A Report to the President and the Congress of the

United States

NATIONAL COUNCIL ON DISABILITY

Marca Bristo, Chairperson

John A. Gannon, Vice Chairperson
 

July 26, 1994

National Council on Disability

Making Health Care Reform Work for

Americans with Disabilities

Summary Information on Five "Town Meetings"

on Health Care Reform: A Report to the President 

and the Congress of the United States

Publication date: July 26, 1994

National Council on Disability

1331 F Street N.W.

Suite 1050

Washington, D.C. 20004-1107

(202) 272-2004 Voice

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

The views contained in the report do not necessarily represent those of the Administration, as this document has not

been subjected to the A-19 Executive Branch review process.

LETTER OF TRANSMITTAL

July 26, 1994

The President

The White House

Washington, D.C. 20500

Dear Mr. President:

Today, as we celebrate the 4th anniversary of the signing of the Americans with Disabilities Act (ADA), I am pleased

to submit to you the Council's report entitled Making Health Care Reform Work for Americans with

Disabilities. Summary Information on Five "Town Meetings" on Health Care Reform: A

Report to the President and the Congress of the United States.

As the original author of the ADA, the National Council on Disability is deeply concerned that ADA's promise of full

equality to 49 million Americans with disabilities cannot be kept if we lose the battle for health care reform.

During March and April of this year, the National Council on Disability held five "town meetings" across the

United States in order to provide persons with disabilities with an opportunity to express their views on the various

proposals for health care reform which are currently being considered by the Congress. This document represents

the opinions of over 130 witnesses and the hundreds of people who attended these town meetings. We were able to

identify the health care priorities of Americans with disabilities. They can be summarized as follows: 

 Universal coverage -- lifetime coverage that can't be taken away, portability and coverage which does not

exclude people because of pre-existing conditions.

 Comprehensive defined benefits package -- access to specialists; home and community-based long-term

care and personal assistant services; durable medical equipment; prescription drugs; and rehabilitation

and mental health services.

 Affordability -- persons with disabilities should not pay a disproportionate share.

 Non-discriminatory -- the health care system cannot discriminate on the basis of a disability.
The President

Page 2

The 49 million Americans with disabilities applaud your leadership on focussing our nation's attention on this

crucial issue. We respectfully hope that this report will provide you and Members of Congress with information

that will be useful in constructing a just and productive health care system for all.

Sincerely,

Marca Bristo

Chairperson

(The same letter of transmittal was sent to the President Pro Tempore of the Senate and the Speaker of the House.)
"Making Health Care Reform Work for Americans with Disabilities"

v National Council on Disability

TABLE OF CONTENTS

National Council Members and Staff . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . vii

Introduction .................................................................................... 1

Town Meetings Schedule .......................................................................... 1

Themes ......................................................................................... 2

 People with Disabilities Are Treated Quite Poorly Under the Current System ............................. 2

Private Health Insurance Companies ................................................. 2

Public Health Insurance Programs ................................................... 4

Long-Term Care .................................................................. 5

 People with Disabilities Live in Fear of the Repercussions of Many of the Current

 Health Care Reform Proposals .................................................................. 6

Access v. Coverage ................................................................ 6

Health Care Alliances .............................................................. 6

Community-Based Coverage v. Institutional Coverage ................................... 7

Choice of Providers ............................................................... 7

Rationing ........................................................................ 9

 The Goals of Universal Coverage and Comprehensive Benefits for Persons with 

 Disabilities Can Be Achieved .................................................................... 9

Elimination of Pre-Existing Condition Exclusion ....................................... 9

Elimination of Lifetime Caps . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Universal Coverage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Consumer Needs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Expansion of Community Mental Health Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

Assistive Technology Coverage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Elimination of Work Disincentives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

 Strategies Can Be Developed to Make Health Care Reform Responsive to the Needs

 of Americans with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Principles for Health Care Reform from a Disability Perspective . . . . . . . . . . . . . . . . . . . . . . . . . 14

Needs of People with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
vi

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Attachments

 A. A Description of the Process Used to Conduct the National Council on Disability's Health Care

Reform Hearings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

 B. Consortium for Citizens with Disabilities: Principles for Health Care Reform From a Disability

Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

 C. Participant List . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

 D. Mission of the National Council on Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43
"Making Health Care Reform Work for Americans with Disabilities"

vii National Council on Disability

NATIONAL COUNCIL MEMBERS AND STAFF

MEMBERS

Marca Bristo, Chairperson

John A. Gannon, Vice Chairperson

Linda W. Allison

Ellis B. Bodron

Larry Brown, Jr.

Mary Ann Mobley Collins

Anthony H. Flack

Robert S. Muller

Bonnie O'Day

Mary M. Raether

Shirley W. Ryan

Anne C. Seggerman

Michael B. Unhjem

Helen W. Walsh

Kate Pew Wolters

STAFF

Edward P. Burke, Acting Executive Director

Billie Jean Hill, Program Specialist

Mark S. Quigley, Public Affairs Specialist

Brenda Bratton, Executive Secretary

Stacey S. Brown, Staff Assistant

Janice Mack, Administrative Officer

EDITORS

Edward P. Burke, Acting Executive Director

Mark S. Quigley, Public Affairs Specialist
"Making Health Care Reform Work for Americans with Disabilities"

1 National Council on Disability

INTRODUCTION

During the months of March and April, 1994, the National Council on Disability held five "town meetings" across

the United States in order to provide persons with disabilities, family members, and other interested citizens with an

opportunity to express their views on the various proposals for health care reform which are currently being

considered by the Federal government. The purpose of these town meetings was to identify the concerns of

consumers regarding current proposals for reform and to learn of possible ways in which these concerns might be

addressed as the various plans go forward. A summary of the process used to conduct the hearings is found in

Attachment A.

TOWN MEETINGS SCHEDULE

Town meetings were held on the following dates in these locations:

 March 30, 1994, San Diego Hilton, 1775 E. Mission Bay Drive, San Diego, CA

 April 5, 1994, Texas Rehabilitation Commission, 4900 North Lamar, Austin, TX

 April 6, 1994, Ramada Inn, 420 SE 6th Street, Topeka, KS

 April 9, 1994, Holiday Inn Crowne Plaza, 1605 Broadway, New York, New York

 April 11, 1994, Holiday Inn City Centre, 1800 Market Street, Philadelphia, PA

Hundreds of people with disabilities and other interested citizens attended these hearings. Over 130 people, the

majority of whom were disabled, provided formal testimony to the Council. While our review of the large body of

testimony emanating from these hearings is ongoing, several major themes have emerged from our review of the

testimony to date. They are as follows:

After five years of crisis-ridden terminal illness, my life was saved in December

of 1990 by a liver transplant. My experience represents the best and worst of
2

the U.S. health care system. As a result of pioneering medical therapy and the

generosity of a donor family, I have been brought back from the brink of death. 

But I face a protracted and intense struggle to obtain the health care I need

every day to stay alive. Since 1985, every decision that my wife and I have

made about family life, employment or education has been weighed against my

need for access to life-sustaining drugs, tests and treatment.

- Robert Fasano

THEMES

People with Disabilities Are Treated Quite Poorly Under the Current System. 

PRIVATE HEALTH INSURANCE COMPANIES

Families sometimes find that soon after their child's diagnosis, their insurance

company increases their premiums dramatically, out of reach of their ability to

pay. Others report that their policies have been cancelled or that the company

refuses to renew them. Families of children whose lives have been saved by

sophisticated but expensive medical treatments find that they have reached a

"lifetime cap" and that their insurance coverage has vanished.

- Kate Maus

Private health insurance companies frequently deny people with disabilities any coverage at all or provide only

limited coverage, often for exorbitantly expensive premium levels. This is frequently due to the exclusion of "preexisting conditions" in many private health insurance plans. Simply put, people with disabilities cannot receive

coverage because of this form of legalized discrimination. While it may be true that certain people with disabilities

might require increased medical services, the actuarial information utilized by many private insurance companies to

determine whether an individual is eligible for coverage often "lumps" people into very large disability categories

(e.g. "cerebral palsy") and provides for exclusion based on these categories, without an individualized

determination. And while the Americans with Disabilities Act contains some very weak provisions concerning

health care insurance discrimination against people with disabilities, much of this actuarial information used to

exclude people with disabilities is quite out-of-date and does not reflect the tremendous progress that has occurred

over the past twenty years in treating and ameliorating the effects of disabilities, the explosion of progress in medical

and assistive technology devices which substantially improve health status, and the remarkably increased life

expectancy for many persons with disabilities. Thus, private health care insurance plans effectively exclude many

people with disabilities from coverage.
"Making Health Care Reform Work for Americans with Disabilities"

3 National Council on Disability

Even for those individuals with disabilities who do receive coverage, it is often reported that private insurance

companies refuse payment for services and items that consumers thought were covered under their health care

plans. 

I don't have prepared testimony because I was up past midnight working on

insurance claims. My nine-year-old son has severe disabilities and I have spent

the past nine years negotiating reimbursement for covered services,

accumulating documentation, appeals and re-appeals for the payment of

covered services. In the past year every one of my son's speech therapy and

half of his physical therapy claims have been appealed. 

- Paula Russell

In addition, co-payment requirements leave many people with disabilities (many of whom are poor, due to the 67%

unemployment rate among people with disabilities) unable to pay for required services. This seems particularly true

regarding prescription drugs. 

I was waiting in line at my pharmacy about a month ago when I overheard the

pharmacist talking to the lady in front of me. She was told that she would be

given a two-day supply of her prescription, and could get the rest when she

came in with the money to pay for it. I wonder if she was able to go back and

get the remainder of her prescription. I wonder if she is all right.

- Michael Todd

Many witnesses reported that they had to make a choice every month about whether they should buy food or fill

their prescriptions. Finally, the existence of "lifetime cap" provisions edge many people with disabilities,

particularly children, out of coverage within a short period of time, sometimes as the result of a single illness.

PUBLIC HEALTH INSURANCE PROGRAMS

Some families find that their only effective choice is to stop working completely

and go on public assistance so that they will have health insurance for their

sick child.

- Kate Maus

Public health insurance programs are full of coverage barriers as well. Hundreds of thousands of Americans with

disabilities must make a choice as to whether they will work and enjoy even a marginally adequate standard of
4

living or whether they will have health insurance. The poverty-based nature of many publicly funded health care

plans makes it impossible for people to work and become more independent. 

Robert E. Friedman, Chair of the Corporation for Enterprise Development, has

pointed out in reference to the welfare system that, "The problem with the

current system is not that it rewards indolence, but that it penalizes effort." 

The same may be said of the Social Security Disability benefits program.

- Dr. Douglas Martin

Even more insidiously, this forced economic idleness can lead to increased health problems in and of itself. For

those who often must choose to forgo an active and contributing life due to the need to have some kind of health care

coverage, there are often waiting periods lasting two years until coverage begins.

A year ago, I went on SS Disability. I have no medical insurance. I know the

awkwardness of not having insurance and having to say, "Take me as a charity

case. I am in deep trouble. I need a steroid treatment." It is an extremely

demeaning and awkward situation to be in. I don't understand the two-year

waiting period for medical coverage under SS Disability. In the real world, I

realize, there are economics involved there. But the insecurity of not having

medical insurance is very stressful.

- Paul Kahn

Thus, the cycle of poverty and poor health is exacerbated.

Once individuals become eligible for coverage, they find that many doctors, hospitals, and other health care

providers will not accept government insurance due to the excessive paperwork and low reimbursement rates

involved. Thus, they must either forgo treatment once again or travel across town to a "Medicaid mill" where

persons are "processed" at great speed (and with very little attention to their individual needs) so that the

professionals involved may maximize their reimbursement. Even when consumers do access appropriate medical

care providers, they often find that publicly-assisted programs will not cover necessary services and equipment. For

example, the refusal of Medicaid to cover appropriate wheelchairs for people with physical disabilities borders on

legendary.

Social Security says it won't pay for a chair my wife can lift, so she'll throw her

back out and become disabled. My doctor gave up trying to get me a

wheelchair. He said, "Let's steal one." We did. The salesman looked the

other way and we took it. 

- Dennis Sharp

At one of our hearings a consumer who uses a wheelchair asked the dozens of other people who used wheelchairs in

the room if they had obtained minimally appropriate wheelchairs through the Medicaid program. Not one said they

had.
"Making Health Care Reform Work for Americans with Disabilities"

5 National Council on Disability

LONG-TERM CARE

I am 67 years old and I have cerebral palsy. I've lived in institutions since I

was ten years old. 

Health care reform that accommodates the needs of people with

disabilities would allow me to live independently in the community for the first

time in my life. If I could live in the community with the aid of universal

health coverage and guaranteed long-term care services, I could come and go

as I please for the first time in my life. 

I still have hope that I will be able to leave the nursing home and live on

my own. Health care reform that does not meet the needs of people with

disabilities like me is not real health reform.

- Harry Richardson

Finally, it must be noted that a significant portion of the billions of dollars spent by government agencies on an

annual basis for long-term care coverage is wasted on the unnecessary institutional placement of persons with

disabilities (and others) in nursing homes and State and county institutions. Given the tremendous institutional bias

of government long-term care options, literally hundreds of thousands of citizens have no other choice but to live in

nursing homes and other segregating, dehumanizing institutions. The continued placement of individuals in these

inappropriate institutions is not due to their "need" for such placements. 

For nearly twenty years, alternatives to these placements have been in place and have been quite successful in

providing for the needs of these individuals in home and community based settings, often at lower cost to the

government. 

Concepts of Independence is a unique approach to home care services in which

an individual is given the power to hire, fire and train a home attendant. It has

been in existence for fourteen years and currently serves over 350 consumers,

so that should be proof enough that it is a doable thing. It is also very cost

effective. It would save 50% of the money it would take to maintain a person in

an institution. In addition, it allows people to have a more dignified and

satisfying way of life by enabling them to maintain themselves in their own

homes.

- Pat Walls

Indeed, there are now entire States wherein, for example, nobody with a developmental disability lives in a large

congregate care institution. Thus, it is apparent that there is a painful gap between what we know how to do in

order to dramatically improve the quality of life experienced by people with disabilities and what the government

currently funds. Without a massive redeployment of resources in favor of supporting individuals and their families

in home and community-based options, literally millions of people will continue to have their lives wasted for them

by the government and waiting lists for community services will continue to expand.
6

People with Disabilities Live in Fear of the Repercussions of Many of the

Current Health Care Reform Proposals.

ACCESS V. COVERAGE

Even given the absolute inadequacy of the current health care insurance situation, many witnesses testified that they

were afraid that the situation might become worse if certain proposals for health care reform currently being

considered were adopted. First of all, many of these proposals guarantee "access" to health care, not "coverage." 

As one witness noted, 

We all have access to purchasing markets. If we have enough money, they'll be

happy to sell it to us. That's what access to health care means: if we're rich, we

can buy into it. We already have access. What we need is guaranteed coverage.

Thus, rhetoric regarding "expanded access" to health care is widely rejected.

HEALTH CARE ALLIANCES

Another fear expressed during the hearings was that the proposed model of "health care alliances" or other similar

cooperative ventures would continue (and perhaps expand upon) the current inadequacies of the private insurance

industry. Many witnesses saw alliances as perpetuating the current problems they experience in obtaining

appropriate coverage. They do not see much chance for change if the same companies which currently provide

them with inadequate coverage band together. In fact, many saw the situation as getting worse, even if the goal of

"universal coverage" remained in the reform package.

COMMUNITY-BASED COVERAGE V. INSTITUTIONAL COVERAGE

Long-term care which is community based and provided in the home is

essential to divert people with severe disabilities from expensive nursing homes

which are often paid for by federal dollars. Diverting funds from the nursing

home "cartel" to fund community based in-home supports is a cost efficient

program that will enable more people with disabilities to work, play and

contribute in their communities. 

- Patricia Yeager

In addition, many witnesses feared that the current institutional bias in publicly-financed long-term care programs

would get worse. This was based on the outright exclusion of home and community-based coverage in many

proposals and the relatively modest support for home and community-based coverage in even the most sweeping

proposals. One fear is that if, indeed, "universal coverage" is mandated for acute and episodic services, and
"Making Health Care Reform Work for Americans with Disabilities"

7 National Council on Disability

promises are kept wherein the Medicare program remains untouched, current Medicare dollars will, through

default, be channelled into long-term institutional settings for older persons. As it is currently the case that many

people with disabilities (including thousands of younger people with disabilities) are effectively forced to live in

nursing homes and other "chronic care" institutions, an expansion of institutional placements for older Americans

will lead to an expansion of the inappropriate institutionalization of people with disabilities, particularly as many

institutional facilities are linked to profit-making , multi-State (and sometimes, multinational) corporations, who

need to maintain high average daily census counts in order to maximize profits.

CHOICE OF PROVIDERS

Many individuals also expressed fear that their choice of providers would be severely restricted. In some

cases their experiences under the current system have caused them to be concerned. 

My health care providers are judged by the insurance payors as "preferred"

primarily based on the swiftness the provider gets the patient in and out of the

system.

- Janice Drake

Many adults with disabilities and parents of children with disabilities testified that it had taken them literally years

to locate professionals who were familiar with and competent in treating a particular disability. They feared that

their choice to continue seeing these professionals would be taken away under most of the current reform proposals. 

I tried to get [the managed care insurance company] to understand how my

care could be harmed by forcing me to be treated by doctors who know nothing

about my history. I have tried to explain that switching providers will force

doctors to do expensive and redundant retesting to establish test baselines that

describe my condition. Providers who have not monitored my condition over

time will not detect changes in my condition that may call for a change of my

immunosuppressive regimen or other treatments. And, as observant as I have

learned to be over the course of my treatments, there are times when I may not

be able to communicate or detect a change in my condition.

- Robert Fasano

With a perceived reduction in specialty care, the provision of disability-related treatments and services would not

even be considered, as professionals would be unfamiliar with the needs of consumers. Many witnesses stated that

they were afraid that these necessary treatments and services would not be available under most of the reform plans,

either due to ignorance on the part of providers or limitations on funding.

All plan participants were forced, with one week's notice, to select a gatekeeper

from a list of primary care physicians.... When calling primary care physicians
8

to ask whether they would act as my "gatekeeper" and coordinate my post-liver

transplant immunosuppressive therapy, I was refused by the primary care

providers based on my condition. They stated that they would not see me

because they are not appropriate providers. They said that my primary care

should be coordinated by a physician knowledgeable in post-liver transplant

immunosuppressive protocols. .... The problem is that there are no doctors on

the managed care plan's list of primary care doctors who are familiar with

these protocols. Now I am stuck with a complex medical condition which may

be destabilized at any time and a provider who doesn't understand my needs but

who can give or withhold care that I need.

- Robert Fasano

RATIONING

Finally, several witnesses stated that they feared that cost control measures (which would inevitably be part of any

reform plan adopted by the government) would lead to health care rationing. Such rationing, coupled with the

significant discrimination faced by individuals with disabilities, would lead to the denial of necessary -- even lifesaving -- treatments and services for persons with disabilities. This is not a theoretical issue. Witnesses cited the

1992 health care reform plan proposed by the State of Oregon which would have excluded people with specific

disabling conditions from treatment as evidence of the possible effects of rationing. While this plan was rejected by

the Federal government because of possible violations of the Americans with Disabilities Act and was not given

approval until this concern was addressed, other pervasive attitudinal barriers (exemplified, for instance, by the

current frenzy regarding so-called "physician assisted suicide" targeted mostly at people with disabilities) amply

substantiate this fear.

The Goals of Universal Coverage and Comprehensive Benefits for Persons with Disabilities Can Be

Achieved.

ELIMINATION OF PRE-EXISTING CONDITION EXCLUSION

It may be clear to some, but not to all, why the allowance of a phrase, such as

"pre-existing conditions" is an overwhelming ruse for blatant discrimination. 

It is pure and simple discrimination because insurance companies have used

this phrase repeatedly to exclude our people from covered policies for many

years!

- Dr. Erik von Schmetterling

In spite of the many issues cited above, most witnesses were hopeful that the goals of universal coverage and

comprehensive benefits could be achieved. First of all, the most basic step toward this goal would be to eliminate the
"Making Health Care Reform Work for Americans with Disabilities"

9 National Council on Disability

pre-existing condition exclusions that are embedded in the vast majority of health insurance programs. Simply put,

in the views of consumers, it is criminal that people are totally excluded from coverage based on who they are or

given coverage for everything other than their major areas of need. The economic impact of these pre-existing

condition exclusions -- which effectively force people with disabilities into government programs that make it

impossible to work -- is staggering. 

Princeton sociologist, Paul Starr, points out that three out of ten people say that

they or someone in their family have had to give up a better job opportunity

because of a pre-existing medical condition. 

- Dr. Douglas Martin

The resulting loss of independence and basic human dignity is immeasurable. Therefore, the first step toward

universal coverage and comprehensive benefits must be the elimination of pre-existing condition exclusions.

ELIMINATION OF LIFETIME CAPS

Second, provisions in current health insurance plans that impose lifetime caps on services should be eliminated. 

Under the current system, the small number of people who require intensive, expensive services are, in effect, told

that their health and even their lives are no longer valuable once they have reached a certain health care

expenditure level.

The insurance company at my husband's new employer ... would only cover my

lupus to a lifetime limit of $10,000. When you're spending over $300 per

month on drugs and hundreds more each year on physician care and laboratory

work, that amount wouldn't last very long. One -- even one very brief --

hospital stay would use it all.

- Jean Hall

Ironically, this expenditure level is often considerably less than the level that the government spends on one or two

health-related grants, grants which are often responsible for the expensive technology used on people until they have

reached their lifetime cap. This is not to open a floodgate of expensive medical procedures that will bankrupt the

system. With extremely few exceptions, no one would choose to undergo these procedures unless they were

absolutely necessary. 

UNIVERSAL COVERAGE

Third, there must be a government mandate for universal coverage (not universal 

access). Whether this takes the form of a guaranteed governmentally-supported system, employer mandates, or

other mechanisms is open. However, there must be a guarantee of universal coverage. 
10

We must insist upon universal coverage. Everyone in this country must be able

to get the health care services they need when they need it. Period.

- Bill Stothers

This mandate should not encourage the development of a secondary insurance market through its coverage

restrictions. For example, it is entirely conceivable that universal coverage could be mandated, yet only cover two

respiratory therapy sessions per month. For an infant needing daily respiratory therapy this would obviously not

be sufficient. How would the extra sessions be financed? In many situations, family resources would be exhausted

quickly. Enter the specter of a secondary insurance market developing in order to cover these "extra" services. 

Multiply this example across several areas (physical therapy, chemotherapy, testing procedures, etc.) and

consumers face the same situation they are in now. The development of this secondary market also makes it easy for

the government to not include certain services, dramatically restrict coverage, or eliminate existing coverage

provisions due to the very existence of this secondary market.

CONSUMER NEEDS

Fourth, it is important that the mandate covers what consumers actually need, not what is currently available. As

mentioned above, health care reform for people with disabilities should eliminate the current disparity between

funding for home and community-based services and institutional placements. 

I watched a capable individual change when she contracted a very disabling

condition who could not do her own shopping. She wanted to live

independently. She did not want nursing homes. But the only time she got the

right care was in the nursing home because that was the only time she qualified

for MediCal. She was unable to pay for the drugs that she needed to live and

had to make the choice between the drugs and eating. She turned to another

drug that was cheaper and easier to get. It eventually killed her.

- Linda Thompson

We have known for decades that people with disabilities can and should lead lives of maximum independence,

productivity, and inclusion in their local communities, instead of being forced out of their homes and effectively

placed under the "ownership" of either the State or medical model corporations. As the supports needed by

individuals with disabilities to live in the community are still classified as "health related," health care reform

should eliminate the current disparity and significantly redeploy funding into home and community-based options. 

If this does not occur, tens of thousands of people with disabilities will be effectively denied access to the stated goals

of the Americans with Disabilities Act: equality of opportunity, full participation, independent living, and economic

self-sufficiency.

I want health care coverage so I can get a job and become a tax paying citizen. 

Now I can't work because if I do, I can't earn anything above the poverty level

or I lose my health coverage. In this state, it is estimated that it costs $72,000 a

year to keep a head-injured person in an institution. My family has taken care
"Making Health Care Reform Work for Americans with Disabilities"

11 National Council on Disability

of me, but they are getting on in years. I want to be on my own so I can have

some kind of a life. 

- David Wilson

EXPANSION OF COMMUNITY MENTAL HEALTH SERVICES

In addition, there should be a significant expansion of community mental health services. 

For many people, children and families in particular, [mental health] services

just do not exist in their neighborhoods or within a reasonable commute. For

others, insurance does not provide coverage for all or any of the services, copayments may be too high, or sliding scale fee schedules may not be available. 

Families frequently must relinquish custody in order to access services for their

minor children. 

- Eva Walters

Current evidence shows that many mental health problems are amenable to a wide variety of medical treatments.

Yet, most of the current proposals for health care reform fail to provide for parity between physical and mental

health services. This maybe due to the continuing assumption that mental health problems are really the "fault" of

the individual and that they would "go away" if only the individual "behaved." This type of stereotyping and the

extreme prejudice faced by people with mental health issues remain as barriers to adaptive public policy regarding

equal treatment for physical and mental health services. Furthermore, the denial of mental health coverage results

in increased costs for physical health care.

An extremely compelling reason to provide comprehensive mental health

coverage is that studies have shown that it results in a decrease in the use of

general medical care. Eighty-five percent of all studies on offsets demonstrate

that the utilization of medical treatment decreases following mental health

treatment - inpatient utilization by about 70 percent and outpatient, by over 20

percent.

- Berta Britz

ASSISTIVE TECHNOLOGY COVERAGE

Next, there should be coverage for assistive technology. While it has been argued that some assistive technology

might not be "medically necessary," it is important to note that over the past decade there has been a vast increase

in the amount and type of technology available to assist individuals with disabilities. This technology has been
12

instrumental in enabling people with disabilities to become more mobile, more functional, and, in general, much less

dependent on the care of others.

I have had polio and use a powered wheelchair. At my work site, I have a

computer which recognizes and responds to my voice and I have these braces

which are customized for me to get the most potential with my strength. 

Sometimes I feel like the bionic woman. Without these braces, I wouldn't be

able to feed myself; I wouldn't be able to write. 

- Darlene Calvert 

Many witnesses testified that the increased mobility and communication skills they enjoy as a result of assistive

technology have led to a dramatic reduction in secondary disabling conditions (decubitus ulcers, respiratory

infections, etc.) and much greater access to medical assistance through improved communication. When assistive

technology is made unavailable, individuals suffer.

I know one individual who has cerebral palsy and puts a lot of stress on his

wheelchair because he has a lot of movements. His wheelchair only lasts a

couple of years and MediCal won't fund another for five years. His chair fell

apart and he didn't have a chair to support his body. I watched him deteriorate

because of that.

- Linda Thompson

It should also be noted that much of this technology has been developed with the support of Federal grants to

medical and health-related facilities. Once again, it would seem quite ironic that technology developed under

medical auspices should be suddenly considered "non-medical" when consumers seek to access it. 

ELIMINATION OF WORK DISINCENTIVES

Finally, any effective effort at health care reform should break the current stranglehold that health insurance

currently has on the ability of people with disabilities to work and be productive in society. As noted earlier,

current health insurance programs effectively prohibit large numbers of people with disabilities from working. Any

health care reform measure that purports to improve upon the current system should eliminate the work

disincentives embedded in the current system.

In all of the hoopla about how expensive national health care will be, everyone

seems to have lost sight of the fact that so many people will be able to work now

that health care is available to them. The disability community is a huge

economic engine that is currently stalled because of the high cost of health

insurance or its complete unavailability. If people with disabilities can go to

work, then we can help pay for this program rather than be forced to live off

the public "purse."

- Patricia Yeager
"Making Health Care Reform Work for Americans with Disabilities"

13 National Council on Disability

Strategies Can Be Developed to Make Health Care Reform Responsive to the

Needs of Americans with Disabilities.

PRINCIPLES FOR HEALTH CARE REFORM FROM A DISABILITY PERSPECTIVE

Throughout the hearings, people with disabilities and other interested citizens repeated their belief that health

care reform efforts should address the principles articulated by the Consortium for Citizens with Disabilities

(CCD): non-discrimination, comprehensiveness, appropriateness, equity, and efficiency (please refer to

Attachment B for a summary of these principles). In analyzing proposals for health care reform which were

pending at the time of the town meetings, witnesses stated that only two of the current approaches being

considered would address these principles: the single-payer proposal and the Administration's proposal. It is

beyond the scope of this brief summary to provide a detailed analysis of how each of these proposals would

need to be modified in order to meet the needs described above or the principles of the CCD. However, it is

encouraging to note that consumers did see much promise in both of these approaches and believed that with

appropriate amendments, either plan had the potential for meeting the needs of people with disabilities in a

substantive, though perhaps not ideal, fashion.

While the single-payer system is seen as one which would meet everybody's needs, consumers did express

reservations about several aspects including choice of medical professionals/procedures they would be able to

access and the probability of rationing under a single-payer system. And while support was also expressed for

the Administration's plan, concerns were also voiced regarding the continuation of gatekeeping responsibilities

by the health insurance industry, insufficient attention to durable equipment needs, the continued preference

for institutional versus home and community placements, rationing by providers which has a disproportionate

impact on people with disabilities, and other issues. Clearly, both proposals would require modification, if

either were to better address the needs of people with disabilities.

NEEDS OF PEOPLE WITH DISABILITIES

It is critical to note that while "special interest groups" attempt to sway the health care reform debate to favor

their positions or industries, the amendment of current proposals to address the needs of Americans with

disabilities does not constitute the extension of favor to a specific interest group. At present, there are 49

million people with disabilities in America. Well over half of the U.S. population has a family member, friend,

or colleague with a disability. And, as the population ages, it is inevitable that many people will experience

disabilities in themselves or their families and friends during the course of their lifetimes.

Recent Federal legislation has referred to the fact that disability, far from being a rare event, is a natural part

of the human experience. Within this context, paying attention to the needs of people with disabilities does not
14

constitute a "cave in" to a special interest group. Paying attention to the needs of people with disabilities

means paying attention to the potential needs of all citizens. 

Disability is one of the fastest growing minority groups that anyone can join at

any time.

- Congressman Jerrold Nadler

CONCLUSION

This brief report summarizes the many hours of testimony provided to the National Council on Disability

during its five town meetings on Making Health Care Reform Work for Americans with

Disabilities. We are quite grateful to all who took the time and made the effort to attend these meetings,

meetings which exemplified one of the best traditions of American democracy. The National Council on

Disability looks forward to continuing its work with the community of people with disabilities, the

Administration, and the Congress toward the creation of a health care system that meets the needs of all

Americans in the near future.
"Making Health Care Reform Work for Americans with Disabilities"

National Council on Disability
16

ATTACHMENT A
18

ATTACHMENT A:

A DESCRIPTION OF THE PROCESS USED TO CONDUCT THE 

NATIONAL COUNCIL ON DISABILITY'S HEALTH CARE 

REFORM HEARINGS

Each meeting began with a presentation by John A. Gannon, Acting Chairperson of the National Council, who

explained the purpose of the meeting, the role of the National Council in shaping disability policy at the Federal

level, and previous work done by the Council in the area of health care for Americans with disabilities. 

Next, Justin Dart, former Chairperson of the President's Committee on the Employment of People with

Disabilities, described the importance of the issue of health care reform to persons with disabilities, particularly

as it related to employment, community living, and the implementation of the Americans with Disabilities Act. 

After this, Paul Marchand*

, Kathy McGinley, or Marty Ford of the Arc (formerly the Association for

Retarded Citizens of the U.S.), described the features of the major health care reform proposals currently

being considered by the Congress. 

Next, Gina McDonald, Executive Director of the Kansas Association of Independent Living Centers, described

various methods by which consumers could become more involved in the debate on health care reform both at

the local and national level. 

Finally, Ed Burke, Acting Executive Director of the National Council, described the town meeting process,

"groundrules" for testimony, and what would happen as a result of the meetings.

___________________________________________________________

*

 Note: Mr. Marchand also serves as Chairperson of the Consortium for Citizens with Disabilities, a

Washington, DC-based organization of over 100 national associations concerned with the needs of persons

with disabilities.
20

ATTACHMENT B
22

ATTACHMENT B:

 

 CONSORTIUM FOR CITIZENS WITH DISABILITIES

HEALTH TASK FORCE

 

"PRINCIPLES FOR HEALTH CARE REFORM

FROM A DISABILITY PERSPECTIVE"

 

 

(February, 1993)

 

ON BEHALF OF:

AIDS Action Council

Alliance for Genetic Support Groups

American Academy of Physical Medicine and Rehabilitation

American Association for Counseling and Development

American Association of University Affiliated Programs

American Association on Mental Retardation

American Civil Liberties Union

American Congress of Rehabilitation Medicine

American Foundation for the Blind

American Occupational Therapy Association

American Physical Therapy Association

American Psychological Association

American Speech-Language-Hearing Association

Epilepsy Foundation of America

Immune Deficiency Foundation

International Association of Psychosocial Rehabilitation Services

Joseph P. Kennedy, Jr. Foundation

Learning Disabilities Association

National Alliance for the Mentally Ill

National Association for Music Therapy

National Association of Developmental Disabilities Councils

National Association of Medical Equipment Suppliers

National Association of Private Residential Resources

National Association of Protection and Advocacy Systems

National Association of Rehabilitation Facilities

National Association of State Mental Retardation Program Directors

National Council for Independent Living

National Council of Community Mental Health Centers

National Easter Seal Society

National Head Injury Foundation
"Making Health Care Reform Work for Americans with Disabilities"

23 National Council on Disability

National Mental Health Association

National Multiple Sclerosis Society

National Organization for Rare Disorders

National Parent Network on Disabilities

National Recreation and Parks Association

National Rehabilitation Association

National Spinal Cord Injury Association

National Transplant Support Network

Spina Bifida Association of America

The Arc

The Association for Persons with Severe Disabilities

United Cerebral Palsy Associations, Inc.

World Institute on Disability

INTRODUCTION

 

The organizations represented in CCD's Health Task Force appreciate the opportunity to express our priorities for

health care reform from a disability perspective. The time is ripe to sharpen the debate for national health care

reform. The Consortium for Citizens with Disabilities is a working coalition comprised of over 75 consumer, service

provider, and professional organizations which advocate on behalf of persons with disabilities and their families. 

This statement is presented on behalf of 42 national organizations who comprise the overwhelming majority of CCD

Health Task Force members. The more than 43 million Americans with disabilities include individuals with

physical and mental impairments, conditions, or disorders, severe acute or chronic illness 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

reasons for the passage last year of the historic Americans with Disabilities Act was to finally recognize not only the

existence and importance of these millions of American with disabilities, but also to ensure their individual civil

rights.

When one considers the number and range of individuals covered by the definition of disability, it is no wonder that

the issue of access to appropriate, adequate, and affordable health care and related support systems is of such

critical important to the CCD. In fact, while 43 million is the official number cited for persons with disabilities, the

CCD believes that, in actuality, this number is an under-estimation. Therefore, it is also no wonder that any

discussion of reform of the nation's health care system must include not only the generic consumer perspective but

also the unique perspective of consumers with disabilities. It is the belief of the CCD that addressing the disability

perspective in the current health care reform debate will ultimately benefit all Americans.

In considering the issue of health from the disability perspective, it is essential to re-focus our conception of what

being "healthy" really is. For so many people with disabilities, health is determined by functional capacity. It is the
24

ability to maintain or increase this functional capacity that is often the measure of the person with disabilities'

opportunity to live an independent life and participate as fully as possible in the life of the community. True

realization of the rights now guaranteed by the ADA and other important pieces of civil rights legislation,

unfortunately, will continue to be limited as long as people with disabilities do not have access to a seamless array of

life-long health, personal, and support services.

The CCD had determined that any effort to reform the nation's health care system must be built on five basic

principles: non-discrimination, comprehensiveness, appropriateness, equity, and efficiency. Only in this manner can

we ensure that national health care reform efforts take into consideration the needs of Americans with disabilities.

PRINCIPLES

 

The CCD believes that any ultimate solution to the health care crisis must be based on the principle of

non-discrimination ensuring that people with disabilities of all ages and their families have the opportunity to fully

participate. The CCD would define a successful health care system as one that offers a comprehensive array of

health, rehabilitation, personal, and support services, as well as a system that ensures that these services are

appropriate in that they are provided on the basis of each individual's need, personal choice, and situation. In

addition, any truly effective solution must be equitable ensuring that no group of individuals bears a

disproportionate burden. 

Finally, the CCD asserts that an effective and accessible health care system must be efficient ensuring that system

resources are utilized to meet health care needs. The CCD strongly supports the right to health care for all persons

regardless of income or health status.

Non-Discrimination: People with disabilities of all ages and their families must be able to

fully participate in the nation's health care system.

People with disabilities are often discriminated against in the health insurance marketplace because they are

presumed to be high health care users. In fact, most people with disabilities are not sick. Nevertheless, private

insurers use medical underwriting practices which are designed to ensure that high users of health care are charged

higher premiums, subjected to preexisting condition exclusions, or rejected totally as an "unacceptable risk". 

Discrimination occurs when a sizeable proportion of people with disabilities, who are actually low users of health

care, are denied insurance or subjected to preexisting condition exclusions. Discrimination also occurs when high

users of health care are denied adequate coverage because they cannot afford the premiums or are subjected to

limitations on covered services. From a disability perspective, the very practice of experience-rating, which ensures

that premiums are set on the basis of previous utilization, is a form of unfair discrimination against high users.

Access to health care for individuals with disabilities cannot be considered in a vacuum. Historically, discrimination

on the basis 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 of the Americans with Disabilities

Act and other important civil rights legislation, there is a growing realization in the disability community that access

to health care is a major barrier that threatens to interfere with the attainment of these rights. The CCD believes

that the present inability of a substantial proportion of people with disabilities to participate in the nation's health
"Making Health Care Reform Work for Americans with Disabilities"

25 National Council on Disability

care system at a level which meets their needs is a direct reflection of the continued misperception of both the skills

and needs of people with disabilities. Non-discrimination requires that 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 health

related services;

 provides access without regard to age, race, place of residence, or the characteristics of persons

with whom one maintains family relationships;

 ensures continuity and portability of coverage.

Comprehensiveness: People with disabilities and their families must have access to a health

care system that ensures a comprehensive array of health, rehabilitation, personal, and

support services across all service categories and sites of service delivery.

The CCD asserts that an effective and comprehensive health care system, one that is responsive to the needs of

people with disabilities, would provide a seamless array of life-long health related services. Comprehensiveness

implies the broadest set of services that assist individuals with disabilities and their families to achieve and sustain

optimum physical and mental function. The terms "health, rehabilitation, personal, and support services", used by

the CCD, refers to a universe of services delivered by a range of practitioners in a variety of sites and illustrates the

necessary breadth of a health care delivery system that is truly accessible to people with disabilities. Over the course

of a lifetime, all people commonly require a broad array of health, rehabilitation, personal, and support services. 

However, access to the entire array of these services must be ensured for people with disabilities. Often it is the

availability of these services that can determine their ability to live independent lives and fully participate in the

community. Moreover, adequate access can prevent exacerbation of a small health problem into a larger more

costly health problem. People with disabilities would most benefit from a health care system that includes access to:

 preventive services, including services to prevent the worsening of a disability

 health promotion/education services

 diagnostic services

 inpatient and outpatient physician services

 hospital inpatient and outpatient care

 long- and short-term home and community-based services

 long-term care in medical facilities

 prescription drugs, biologicals, and medical foods

 mental health, counseling, and substance abuse services

 habilitation services

 rehabilitation services, including audiology, occupational therapy, physical therapy, psycho-social

services, respiratory therapy, speech-language pathology services, cognitive, vision, and behavioral

therapies, and therapeutic recreation

 personal assistance services and independent living services
26

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

Appropriateness: People with disabilities and their families must be assured that

comprehensive health, rehabilitation, personal, and support services are provided on the basis

of individual need, preference, and choice.

Particular attention must be placed on the appropriateness of available services. It is of critical importance to the

disability community that full involvement of the "consumer" is assured in all decisions affecting the selection of

service, service provider, service timing, and service setting. CCD is concerned that certain forms of managed care

create an incentive for under-serving people with disabilities and often utilize gate-keepers who are not

knowledgeable about the special health care needs of people with disabilities.

The issue of consumer choice and participation has a particular importance for persons with disabilities. While the

present acute-care oriented health care system has a tendency to relegate all "consumers" to a dependent status

embodied in the "sick role", this indignity is particularly disempowering to people with disabilities when their

chronic health conditions are permanent. That is why the health related services for persons with disabilities must

be delivered in a way that minimizes interference with normal activities, and that health care financing policies

which govern access to health care for persons with chronic conditions must be sensitive to issues of locus and

control.

It is essential that decisions about health care services reflect personal preference and maximum benefit to the

individual rather than provider and service setting availability, cost-containment goals, or coverage limits. CCD

asserts that meaningful access to health care involves the right of the individual consumer to participate in the

decision-making process regarding the provision of needed services and to be educated so appropriate self-care is

possible.

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

the nation's health care system. An appropriate health care system is 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 be ensured equitable participation in

the nation's health care system and not burdened with disproportionate costs.

The CCD asserts that equal access to health services will not be readily achievable unless payment for health,

rehabilitation, personal, and support services is equitably distributed so that no individual or public or private

sector interest is burdened with a disproportionate share of the cost. Because of cost issues, too often people with

disabilities and their families have been required to make unfortunate choices between needed health services in

appropriate settings and what they can afford. These types of choices obviously do not reflect the principles of

non-discrimination, comprehensiveness, and appropriateness of services.
"Making Health Care Reform Work for Americans with Disabilities"

27 National Council on Disability

Health care reform must ensure that people have access to services based on health care need and not on their

employment status or income level. As a group, people with disabilities have lower income than the general

population and many adults with disabilities and families with members with disabilities devote a disproportionate

share of their income to health care and disability related services. An equitable health care system would be one

which:

 limits out of pocket expenses and cost sharing requirements for participants;

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

 ensures adequate reimbursement for service providers;

Efficiency: People with disabilities and their families must have access to a health care system

that provides a maximum of appropriate effective quality services with a minimum of

administrative waste.

The CCD is concerned that the current fragmentary system has failed to achieve effective cost controls, or a rational

allocation of health resources, and contributes to substantial administrative waste. It is estimated that more than 20

percent of health care expenditures are attributed to administrative costs as 1,500 private health insurers require

different forms of provider documentation to trace every claim for reimbursement to the utilization by a specific

individual with his or her own health insurance plan. In addition, the fragmentary system has contributed to the

growth of excess capacity in the health care delivery system, inviting cost shifting, and undermining efforts to

achieve effective cost controls. This has reinforced pressures for arbitrary cost containment by limiting coverage in

ways that often adversely affect persons with disabilities.

Moreover, health care financing policy has not evolved much beyond acute care, failing to respond to the growing

need for preventive care and for chronic health care management which could significantly reduce the growth of

preventable diseases.

An efficient health care system is one that:

 reduces administrative complexity and minimizes administrative costs;

 allocates resources in a more balanced way between preventive 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 is reviewing all the health reform legislation before

the Congress and submitting assessments of these bills as they are completed.
28

 

CONCLUSION

 

The disability community needs to be a major player in reexamining health care financing policy. People with

disabilities are highly vulnerable to the limitations of both public and private systems as they are squeezed between

a private system which is designed to charge accordingly to an assessment of risk and a public system which

subsidizes health care according to age, poverty status, family structure, and an inability to work. Private health

insurance was developed and has remained a method for spreading risk of incurring excessive costs primarily for

hospital and physician services. For individuals with disabilities, access to health care has been severely restricted

because of preexisting conditions and the mistaken assumption that most people with disabilities need more hospital

and physician care than the population as a whole. 

Health care reform needs to eliminate this restriction and assure access to needed hospital and physician services. 

Equally as important, the tradition of limiting covered services to hospital and physician services must be changed. 

Rehabilitation services, personal and support services, mental health services, and assistive technology must be

recognized as essential components of health care.

Perhaps our greatest contribution will be in clarifying the principles which should guide our health care system. 

These include: (1) expanding the definition of "health" to include prevention services, rehabilitation therapies,

assistive technology, and on-going health-related maintenance services; (2) distributing all health related expenses

equitably throughout the population; and (3) restructuring our health care delivery system to more effectively

support consumer-directed chronic care management.
"Making Health Care Reform Work for Americans with Disabilities"

29 National Council on Disability

ATTACHMENT C
"Making Health Care Reform Work for Americans with Disabilities"

31 National Council on Disability

ATTACHMENT C: 

NCD PARTICIPANT LIST

San Diego, California

March 29, 1994

Ms. Maurizio Antoninetti

2150 Cam. de la Reina - #201

San Diego, CA 92108

619/294-8889

Ms. Elizabeth Bacon

California Association of 

 Persons with Handicaps

5667 Fontaine Street

San Diego, CA 92120

619/594-1112

Mr. Jon Barbre

4990 Del Monte Avenue - #3

San Diego, CA 92107

619/226-1810

Ms. Darlene Calvert

Access Center of San Diego

1322 Minden Drive

San Diego, CA 92111

619/293-3500

Michael Conroy, Esq.

3996 Shasta Street - #103

San Diego, CA 92109

619/581-1720

Mr. Joseph Earnest

AARP/VOTE

1468 La Habra Drive

Lake San Marcos, CA 92069

619/471-9159

Dr. Charles Elliot

6161 El Cajon Boulevard - #77

San Diego, CA 92115

619/496-1303

Mr. Tom Evans

1654 Columbia Street - #404

San Diego, CA 92101

619/232-3400

Mr. Roberto Frias

The Access Center

1295 University Avenue - Suite 10

San Diego, CA 92103

619/293-3500

Mr. Roy Gash

Access Center

8838 Mulvaney Drive

San Diego, CA 92119

619/296-8012

Ms. Kim Gibbens

San Diego Center for the Blind

5922 El Cajon Boulevard

San Diego, CA 92115

619/583-1542

Mr. Royce V. Hamrick

California Association of 
32

 Persons with Handicaps

7707 Mission Gorge Road - #25

San Diego, CA 92120

619/287-0171

Mr. Wes Johnson

Accessible San Diego

402 West Broadway - Suite 400

San Diego, CA 

619/279-0704

Ms. Julie Kingsley

Parent/Exceptional Family Resource Center

663 Woodward Street

San Marcos, CA 92069

619/471-7353

Douglas A. Martin, Ph.D.

1015 Gayley Avenue - #1008

Los Angeles, CA 90024

310/474-0582

Ms. Gretchen Mattson, M.Ed.

California Association of 

 Persons with Handicaps

2420 44th Street - #C

San Diego, CA 92105-4766

619/262-1683

Ms. Leslie Bryant Morton

Developmental Disabilities Board/Area XIII

4711 Viewridge Avenue - Suite 160

San Diego, CA 92123

619/637-5563

Ms. LaVonne Murphy

National Multiple Sclerosis Society

San Diego Area Chapter

4715 Viewridge Avenue - Suite 150

San Diego, CA 92123

619/974-8640

Mr. Noel Neudeck

Change Agent

6224 Snowbond Street

San Diego, CA 92120-3735

619/382-0576

Ms. Nancy Oro

United Cerebral Palsy Association

4812 Mount Etna Drive

San Diego, CA 92117

619/278-5420

Ms. Michelle Porche

Developmental Disabilities Board/Area XIII

4711 Viewridge Avenue - Suite 160

San Diego, CA 92123

619/454-6889

Mr. Albert G. "Bud" Sayles

Access Center of San Diego

3584 Grim Aveneue

San Diego, CA 92104

619/293-3500

Mr. Dennis Sharp

 and Joanne Sharp

Consumer Access Network (CAN)

1230 Umatilla Street

Del Mar, CA 92014

619/755-0555

Mr. Jordan Sher

Southern Caregiver Resource Center

3675 Ruffin Road - Suite 230

San Diego, CA 92123

619/268-4432

Ms. Alisa Shuman

10226 Princess Saint Way

Santee, CA
"Making Health Care Reform Work for Americans with Disabilities"

33 National Council on Disability

619/258-6244

Mr. Joe Stern

AARP

6923 Amherst Street - #15

San Diego, CA 92115

619/265-2014

Mr. Marc Stern

National Head Injury Foundation/SELF

P.O. Box 10065

Marina Del Rey, CA 90295-6065

310/450-6077

Mr. Bill Stothers 

 and Cindi Jones

Mainstream Magazine

2973 Beech Street

San Diego, CA 92102

619/234-3138

Janice M. Thomas, Esq.

Alliance for the Mentally Ill

1832 Garrison Way

El Cajon, CA 92019

619/899-8639

Ms. Linda Thompson

United Cerebral Palsy Association

400N Melrose Drive - #46

Vista, CA 92083

619/743-1050

F. Burns Vick, Jr., Esq.

Vick & Associates

Post Office Box 160695

Sacramento, CA 95816

916/442-7239

Ms. Patricia Yeager

The Access Center

1295 University Avenue - #10

San Diego, CA 92103

619/293-3500

Austin, Texas

April 5, 1994

Mike Bright

The Arc of Texas

1600 E. 38th Street

Suite 200

Austin, TX 78763

512/454-6694

Laura Brown

Coalition of Texans 

 with Disabilities

316 West 12th Street

Suite 405

Austin, TX 78701

512/478-3366

Ron Cranston

4703 Philco Drive

Austin, TX 78745-1766

512/441-8029

Joyce Dawidczyk

United Cerebral Palsy of Texas

900 Congress - #220

Austin, TX 78701

512/472-8696

Janice Drake

6707 Poncha Pass

Austin, TX 78749
34

512/891-2522

D. J. Johnson

Texas Department of Human Services

11709 Rydalwater Lane

Austin, TX 

512/272-9288

Norman Kieke

United Cerebral Palsy Association

 of the Capitol Area

9027 Northgate, #101

Austin, TX 78758-6453

512/834-1827

Constance L. King

600 Barwood Park - #426

Austin, TX 78753

512/867-5131

Margaret Little

4800 North Lamar

Austin, TX 78756

512/459-2580

Mary Jo Magruder

Texas Planning Council for 

 Developmental Disabilities

4900 N. Lamar

Austin, TX 78751

512/483-4086

Barrett Markland

Advocacy, Inc.

7800 Shoal Creek - #171E

Austin, TX 78757

512/454-4816

Derward McDaniel

5816 Gloucester

Austin, TX 78723

Judith E. Moore

301 A. Algentice

Georgetown, TX 78628

512/930-3652

Carolyn A. Parker, Ph.D.

Texas AIDS Network

P.O. Box 2395

Austin, TX 78768

512/447-8887

Virginia Roberts

Governor's Committee on

 People with Disabilities

201 East 14th

Austin, TX 78722

512/463-5742

Ben A. Rosamond

Lone Star Paralyzed Veterans

3412 Gladiolus Lane

Dallas, TX 75233

214/339-7629

Paula Russell

Texas Network for Children

 with Special Health Care Needs

2601 Great Oaks Parkway

Austin, TX 78756

512/458-1596

Vincent Sadowski

Directors Association of Texas

 Centers for Independent Living

5555 N. Lamar, J-125

Austin, TX 78751

512/467-0744

Jacqueline Shannon

Texas Alliance for the

 Mentally Ill

1000 East 7th Street, Suite 208

Austin, TX 78702

512/474-2225

Judith Sokolow
"Making Health Care Reform Work for Americans with Disabilities"

35 National Council on Disability

Advocacy, Inc.

7800 Shoal Creek Boulevard

Austin, TX 78757

512/454-4816

Michele Whaling

The Arc of Austin

2818 San Gabriel 

Austin, TX 78757

512/476-7044

Becky Zeeck

Capital Area Easter Seal Society

919 West 28 1/2 Street

Austin, TX 78705

512/478-2581

Topeka, Kansas 

April 6, 1994

Thomas A. Applebee

State Rehabilitation

2619 Bret

Salina, KS 67401

913/296-4424

Brian Atwell

Link, Inc.

1310 Walnut

Hays, KS 67601

913/625-6942

Michael Byington

Kansas Association for the Blind

 and Visually Impaired

909 SW College

Topeka, KS 66606

913/296-4454

Bob Clark

CLASS

P.O. Box 266

Columbus, KS 66725

316/429-1212

A. W. Dirks

AARP

11403 West Douglas

Wichita, KS 67209

316/722-3640

Mike Donnelly

3258 S. Topeka Boulevard

Topeka, KS 66611

913/267-7100

Vicki Doyle

Link, Inc.

1310 Walnut

Hays, KS 67601

913/625-6942

Brenda Eddy

1722 NW Belvoir Court

Topeka, KS 66606

913/296-8172

William Fansler

Kansas Association of the Deaf

1940 Bowman Court

Topeka, KS 66604

913/295-1161

Jean P. Hall

Independence, Inc.

1123 East 2300 Road

Eudora, KS 66025

913/841-0333

Diane Kuhn

P.O. Box 3881

Topeka, KS 66604-0881
36

913/272-2204

Dawn Merriman

2515 Rockhurst

Salina, KS 67401

913/827-9383

Mike Oxford

Kansas ADAPT

835 800E Road

Lonester, KS 66047

913/267-7100

Garrett Porter

1803 East 26th

Apartment D

Hays, KS 67601

913/628-1901

Joe Porting

Families Together, Inc.

1023 SW Gabe Boulevard

Topeka, KS 66604

913/273-6343

Jeff Simon

Link, Inc.

339 South 7th

Osborne, KS 67473

913/346-5865

Sheryl Tatroe

Kansas Alliance for the Mentally Ill

112 SW 6th, Suite 505

P.O. Box 675

Topeka, KS 66601

913/233-0755

Michael R. Todd

Independence, Inc.

2011 Miller Drive

Lawrence, KS 66046

913/843-2428

Josie Torrez

Families Together, Inc.

1023 SW Gage

Topeka, KS 66604

913/273-6343

David Wilson

3112 Thornton

Parsons, KS 67357

316/421-1305

Marty Wooten

1313 Adams

Fredonia, KS 66736

316/421-5502

Glen Yancey

Rehabilitation Services

Kansas Department of Social

 and Rehab Services

300 SW Oakley

1st Floor Biddle Building

Topeka, KS 66606

913/296-3911

New York, NY

April 9, 1994

Ruth Aleskovsky

276 Riverside Drive

New York, NY 10025

212/666-1207

Richard Anderson

951 55th Street

Brooklyn, NY

212/264-4715

Sam Anderson
"Making Health Care Reform Work for Americans with Disabilities"

37 National Council on Disability

(no address given)

Kristin-Ann Behrmann

National Easter Seal Society

460-13M Old Town Road

Port Jefferson Station

New York, NY 11776

516/476-3626

James Billy

Harlem Independent Living Center

5-15 125th Street

New York, NY 10027

212/369-2371

Linda W. Blair

Connecticut Union of Disability

 Action Groups, Inc.

P.O. Box 461

New Haven, CT 06502

203/777-1921

Gerald Butell

691 FDR Drive

New York, NY 10009

Susan M. Dooha

National Transplant Support Network

443 E. 88th Street - #17

New York, NY 10128

212/852-5025

Tom Duane

New York City Council Member

275 Seventh Avenue - 12th Floor

New York, NY 10001

212/929-5501

Robert Fasano

National Transplant Support Netowrk

443 E. 88th Street

New York, NY 10128

212/876-9380

Joseph Gordon

Self Help for Hard of Hearing

205 West End Avenue

New York, NY

212/724-4856

Sylvia Gould

Concerned Citizens for National

 Health Care Single Payer

350 W. 51st Streeet

Apartment 8A

New York, NY 10019

Lois Kaggen

Penthouse G

77 Seventh Avenue

New York, NY 10011-6645

212/691-4406

Corinne Kirchner, Ph.D.

American Foundation for the Blind

15 West 16th Street

New York, NY 10011

212/620-2140

Cheryl Krzewina

New York City Civic

 Association of the Deaf

150 East 85th Street - #7B

New York, NY 10028

212/472-6614

Anthony LaGattuta

Metropolitan Chapter of the National 

 Rehabilitation Association
38

42-54 196th Street

Flushing, NY 11358-3030

212/264-4017

Enilda Lozada

New York State Head Injury Association

1537 White Plains Road

Apartment 1B

Bronx, NY 10462-4113

518/482-5285

Congressman Jerrold Nadler

U.S. House of Representatives

Washington, DC 20515

202/225-5635

Dina Niedelman

Disabled in Action

17 Vandalia Avenue - #9R

Brooklyn, NY 11239

718/927-4854

JoAnn Piazzi

Westchester Independent 

 Living Center

297 Knollwood Road

White Plains, NY 10607

914/682-3926

Joseph Prezioso

332 E. 29th Street

New York, NY 10016

Harvey Rosenthal

New York Coalition for Community 

 Mental Health Care Benefits 

 in Health Care Reform

23 Elk Street

Albany, NY 12207

518/436-0008

Marilyn Saviola

(no address given)

Richard Seltzer

311 East 23rd Street

New York, NY 10010

Chris Shawn

Vietnam Veterans Agent

 Orange Network

145 East 30th Street

New York, NY 10016

212/686-8782

Ann Souronis

21-06 23rd Avenue, #1A

Astoria, NY 11105

212/852-8000

Arthur Springer

Asthma and Emphysema Support Network

150 West 80th Street - #4A

New York, NY 10024-6313

212/580-9143

Pat Walls

Concepts

332 E. 29th Street

Apartment 4H

New York, NY 10016

Eva Walters

Mental Health Association in 

 New York State

75 New Scotland Avenue

Albany, NY 12208

518/434-0489

Harry Wieder

67-11 Yellowstone Boulevard

Forrest Hills, NY 11375

718/544-8906

Frieda Zames

Disabled in Action

60 First Avenue - #2F

New York, NY 10009
"Making Health Care Reform Work for Americans with Disabilities"

39 National Council on Disability

212/260-0423

Philadelphia, PA

April 11, 1994

Bonnie Albrecht

790 Bradford Terrace

West Chester, PA 19382

215/431-7295

Berta Britz

Mental Health Association of

 Southeastern Pennsylvania

1618 Rose Glen Road

Havertown, PA 19083

215/735-2465, ext. 231

William Byrnes

Office of Vocational Rehabilitation

7324 Shisler Street

Philadelphia, PA 19111

215/560-1951

Eugene W. Cooper

State Office of Mental Retardation

1400 Spring Garden Street

Philadelphia, PA 19130

215/560-2245

Bill Friedman

Center for Literacy

1220 North Broad Street

Apartment 1021

Philadelphia, PA 19121

215/763-9761

John F. Gladstone

Disabled in Action

125 South 9th Street, Suite 700

Philadelphia, PA 19107

215/627-7255 o

Steve Gold

(no address)

Charles Hamilton

401 Longest Lane

Philadelphia, PA

Cassie James

Liberty Resources

4001 Consbolocken Avenue

Philadelphia, PA 19131

215/627-7255

Hillisa Janoff

Liberty Resources, Inc.

One Winding Way - Suite 108

Philadelphia, PA 19131

215/581-0654

Donald Jones

(no address)

Dorothy Keane & Caroline Morgan

United Cerebral Palsy Association

102 East Mermaid Lane

Philadelphia, PA

Paul D. Kahn

National Multiple Sclerosis Society

31 North Maple Avenue

Apartment 413

Marcton, NJ 08013

1-800-445-2453

Michael Lohr

Consumer Connection

1727 West Hunting Park Avenue

Apartment 124
40

Philadelphia, PA 19140

Joanne M. Marinelli

Matrix Advocacy

6008 Wayne Avenue

Philadelphia, PA 19144

215/438-8200

Kate Maus

Children's Hospital of Philadelphia

34th & Civic Center Boulevard

Philadelphia, PA 19104

215/590-4365

Christie McMahon

2610 Belmont AVenue

Philadelphia, PA 19131

215/877-5224

Stephanie Panavich

(no address)

Marlene L. Perkins

Eastern Paralyzed Veterans Association

5000 Wissahickon Avenue

Philadelphia, PA 19144

215/951-5410

Ann Piccinotti

Liberty Resources, Inc.

14 Berkley Drive

Yardley, PA 19067

215/581-0681

Harry Richardson

Philadelphia Nursing Home

Girard Avenue & Corinthian Street, Room 465

Philadelphia, PA

215/978-2100

Diane Rose

Liberty Resources

1218 N. 64th Street

Philadelphia, PA 19151

215/581-0671

Kimberly Smith-Tann

Epilepsy Foundation of

 Southeastern Pennsylvania

3300 Henry Avenue

9th Floor Main Campus

Philadelphia, PA 19129

215/842-7165

Maureen Sweeny

Liberty Resources, Inc.

One Winding Way - Suite 108

Philadelphia, PA 19131

215/581-0654

Erik T. von Schmetterling, M.D.

ADAPT

158 North 23rd Street - #614

Philadelphia, PA 19103-1039

215/627-7555
"Making Health Care Reform Work for Americans with Disabilities"

41 National Council on Disability

ATTACHMENT D
"Making Health Care Reform Work for Americans with Disabilities"

43 National Council on Disability

ATTACHMENT D:

Mission of the National Council on Disability

OVERVIEW AND PURPOSE

The National Council on Disability is an independent federal agency led by 15 members appointed by the President

of the United States and confirmed by the U.S. Senate. 

The overall purpose of the National Council is to promote policies, programs, practices, and procedures that

guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the

disability; and to empower individuals with disabilities to achieve economic self sufficiency, independent living, and

inclusion and integration into all aspects of society.

SPECIFIC DUTIES

The current statutory mandate of the National Council includes the following:

 Reviewing and evaluating, on a continuing basis, policies, programs, practices, and procedures concerning

individuals with disabilities conducted or assisted by Federal departments and agencies, including

programs established or assisted under the Rehabilitation Act of 1973, as amended, or under the

Developmental Disabilities Assistance and Bill of Rights Act; and all statutes and regulations pertaining to

Federal programs which assist such individuals with disabilities in order to assess the effectiveness of such

policies, programs, practices, procedures, statutes, and regulations in meeting the needs of individuals with

disabilities; 

 Reviewing and evaluating, on a continuing basis, new and emerging disability policy issues affecting

individuals with disabilities at the Federal, State, and local levels, and in the private sector, including the

need for and coordination of adult services, access to personal assistance services, school reform efforts and

the impact of such efforts on individuals with disabilities, access for health care, and policies that operate as

disincentives for the individuals to seek and retain employment.

 Making recommendations to the President, the Congress, the Secretary of Education, the Director of the

National Institute on Disability and Rehabilitation Research, and other officials of Federal agencies,

respecting ways to better promote equal opportunity, economic self-sufficiency, independent living, and

inclusion and integration into all aspects of society for Americans with disabilities.

 Providing the Congress, on a continuing basis, advice, recommendations, legislative proposals, and any

additional information which the Council or the Congress deems appropriate; 
44

 Gathering information about the implementation, effectiveness, and impact of the Americans with

Disabilities Act of 1990 (42 U.S.C. 12101 et seq.);

 Advising the President, the Congress, the Commissioner of the Rehabilitation Services Administration, the

Assistant Secretary for Special Education and Rehabilitative Services within the Department of Education,

and the Director of the National Institute on Disability and Rehabilitation Research on the development of

the programs to be carried out under the Rehabilitation Act of 1973, as amended;

 Providing advice to the Commissioner with respect to the policies of and conduct of the Rehabilitation

Services Administration;

 Making recommendations to the Director of the National Institute on Disability and Rehabilitation

Research on ways to improve research, service, administration, and the collection, dissemination, and

implementation of research findings affecting persons with disabilities;

 Providing advice regarding priorities for the activities of the Interagency Disability Coordinating Council

and reviewing the recommendations of such Council for legislative and administrative changes to ensure

that such recommendations are consistent with the purposes of the Council to promote the full integration,

independence, and productivity of individuals with disabilities;

 Preparing and submitting to the President and the Congress a report entitled National Disability

Policy: A Progress Report on an annual basis; and 

 Preparing and submitting to the Congress and the President a report containing a summary of the

activities and accomplishments of the Council on an annual basis.
"Making Health Care Reform Work for Americans with Disabilities"

45 National Council on Disability

POPULATION SERVED AND CURRENT ACTIVITIES

While many government agencies deal with issues and programs affecting people with disabilities, the National

Council is the only federal agency charged with addressing, analyzing, and making recommendations on issues of

public policy which affect people with disabilities regardless of age, disability type, perceived employment potential,

economic need, specific functional ability, status as a veteran, or other individual circumstance. The National

Council recognizes its unique opportunity to facilitate independent living, community integration, and employment

opportunities for people with disabilities by assuring an informed and coordinated approach to addressing the

concerns of persons with disabilities and eliminating barriers to their active participation in community and family

life.

The National Council plays a major role in developing disability policy in America. In fact, it was the Council that

originally proposed what eventually became the Americans with Disabilities Act of 1990. Our present list of key

issues includes personal assistance services, health care reform, the inclusion of students with disabilities in high

quality programs in typical neighborhood schools, equal employment opportunity, community housing, monitoring

the implementation of the Americans with Disabilities Act, improving assistive technology, and ensuring that

persons with disabilities who are members of minority groups fully participate in society. 

STATUTORY HISTORY

The National Council was initially established in 1978 as an advisory board within the Department of Education

(Public Law 95-602). The Rehabilitation Act Amendments of 1984 (Public Law 98-221) transformed the National

Council into an independent agency.