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.)



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
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



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






                           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 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 "pre-existing 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.

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 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.


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.


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 
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 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 life-saving --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 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.  

     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 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, co-payments 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
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


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 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.











                           ATTACHMENT A


                           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.








ATTACHMENT B



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
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 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 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:

     ùprohibits pre-existing condition exclusions;
     ùprohibits rating practices that discriminate against higher 
     users of health care;
     ùensures that all persons, regardless of income or health 
     status, have access to the   all needed health related 
     services;
     ùprovides access without regard to age, race, place of 
     residence, or the                  characteristics of 
     persons with whom one maintains family relationships;
     ù  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:

     ùpreventive services, including services to prevent the 
     worsening of a disability
     ùhealth promotion/education services
     ùdiagnostic services
     ùinpatient and outpatient physician services
     ùhospital inpatient and outpatient care
     ùlong- and short-term home and community-based services
     ùlong-term care in medical facilities
     ùprescription drugs, biologicals, and medical foods
     ùmental health, counseling, and substance abuse services
     ùhabilitation services
     ùrehabilitation services, including audiology, occupational 
     therapy, physical           therapy, psycho-social services, 
     respiratory therapy, speech-language pathology      
     services, cognitive, vision, and behavioral therapies, and 
     therapeutic recreation
     ùpersonal assistance services and independent living 
     services
     ùdurable 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:

     ùincludes consumer participation;
     ùensures consumer choice in relation to services and 
     provider;
     ùensures a range of service settings through an integrated 
     delivery system;
     ùensures appropriate amount, scope, and duration of 
     services;
     ùensure 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.

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:


     ùlimits out of pocket expenses and cost sharing requirements 
     for participants;
     ùprovides access to services based on health care need and 
     not on income level or    employment status;
     ùensures 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:

     ùreduces administrative complexity and minimizes 
     administrative costs;
     ùallocates resources in a more balanced way between 
     preventive services, acute       care, rehabilitation, and 
     chronic care management;
     ùensures the delivery of effective services;
     ùmaintains 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.


                                 
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.








                           ATTACHMENT C



                          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 
   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
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
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
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
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
(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
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
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
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

                                                  










                           ATTACHMENT D



                           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;  

    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.


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.