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COMMUNI
HEALTH
MEETS
MIXEM
NATIONAL
LET
F.
THE
1730 M Street, NW
Suite 500
Washington, DC 20036-4505
HEALTH
(202) 785-3910
FAX (202) 785-5923
COUNCIL
MEMORANDUM
TO:
NHC Members and Friends
FROM:
Joseph C. Isaacs
DATE:
November 16, 1994
RE:
Council Introduces New Publication
The National Health Council is pleased to forward to you our new publication entitled,
Building Bridges to Find Solutions: A Chronic Illness and Disability Community Response
to Health Care Reform. This publication reviews the Council's April 5, 1994,
unprecedented summit which brought together leading national and grassroots organizations
representing the largely independent chronic illness and disability communities. The
conference was designed to "build bridges" between these communities to identify: (1)
needed solutions to the health care problems facing their constituents and, (2) common
ground for joint advocacy in development of our nation's final reform package.
This report also contains an excellent background paper on the Americans With Disabilities
Act (ADA) and its implications for health reform, as well as the joint statement which
resulted from the summit which was endorsed by nearly 50 leading health and disability
organizations. The statement highlights four major principles for health reform which will
improve the lives and employability of people with chronic health conditions and disabilities:
Reform must provide universal coverage.
Reform must provide a full range of mental and physical health care services
including preventive, acute, chronic, rehabilitative and long-term care.
Reform must promote medical progress through support of research and
development.
Reform must involve consumers at all levels of decision-making.
November 16, 1994
New Publications
Page Two
The National Health Council hopes that you find this publication useful. Should you have
any questions or comments, or desire additional copies of this publication, please contact
our Public Affairs Department at 202/785-3910.
A Health Care
Reform Summit:
Building Bridges to
Find Solutions
A Chronic Illness and
Disability Community
Response to
Health Care Reform
COMMUNITY HEALTH THE MEETS WHERE
The National Health Council, Inc.
The National Health Council
The National Health Council (NHC) is a private, nonprofit umbrella
association of more than 125 leading national health-related
organizations. These include voluntary health agencies (VHAs)
such as the American Cancer Society, professional and membership
associations such as the American Medical Association, health-
related nonprofit organizations such as the American Association of
Retired Persons, businesses such as Pfizer Inc. and Aetna, and
federal government agencies such as the Public Health Service.
The Council fosters communication and collaboration among these
diverse members of the health community toward the mutual goal
of improving the health of all people.
The Council was founded in 1920 as a clearinghouse and cooperative
effort for the nation's voluntary health agencies (VHAs). Today
these agencies remain the core of the Council's membership. The
NHC's primary mission is to promote and strengthen the movement
they embody. VHAs work to improve health by providing patient
and family services, community services, public and professional
education, medical research support and health-related advocacy.
The many contributions of the Council's VHA members exemplify
the virtues of the voluntary health movement. They engage
individuals, families and communities across the country to
volunteer in the effort to prevent, treat and cure debilitating and
life-threatening illnesses, chronic health conditions and other
physical and developmental disabilities. With the generous support
of these volunteers and the donating public, they fill gaps in service
that might not otherwise be met. With a strong sense of human
concern, these agencies provide unique and indispensable assistance
to those most vulnerable in our society.
Copyright 1994 National Health Council, Inc.
All rights reserved. No part of this book may be reproduced or transmitted in any form or by
any means, electronic or mechanical, including photocopying, recording, or by any
information storage and retrieval system, without permission in writing from the publisher.
A Health Care Reform Summit:
Building Bridges to Find Solutions
A Chronic Illness and Disability Community Response
to Health Care Reform
This conference and publication were made possible with grant support
from the Robert Wood Johnson Foundation.
The National Health Council, Inc.
1730 M Street, NW
Suite 500
Washington, DC 20036-4505
(202) 785-3910
FAX: (202) 785-5923
Table of Contents
Introduction
V
Joseph C. Isaacs, President, National Health Council
Session I: The Status Quo - Outlining Problems and Issues
The History of Discrimination
1
Allan I. Bergman, Director of Federal/State Relations, United Cerebral
Palsy Associations, Inc.
The Community Response
3
Robert Silverstein, Staff Director, Senate Subcommittee on Disability Policy
Session II: Promoting Systems Change
Universal Coverage: Can it be Attained?
5
Ronald Pollack, Executive Director, Families USA
A Continuum of Care: The Long-Term Care Problem
7
Joshua M. Wiener, PhD, Senior Fellow, The Brookings Institution
A Continuum of Care: The End to the "Acute Care" Bias?
9
Bob Griss, Director, Center on Disability and Health
Luncheon Session
A Call to Action
11
Tony Coelho, Chairman, President's Committee on Employment of People
with Disabilities
Session III
Storming the Gates for Health Care Reform: Developing Action Steps
13
Moderator: Randall Rutta, Vice President of Government Relations,
National Easter Seal Society
Appendix I
Consensus Statement: Health Care and Discrimination: The Final Hurdle
16
Appendix II
Background Paper: Health Reform and the Americans with Disabilities Act
18
Introduction
On April 5, 1994, the National Health Council, with a grant from the Robert
Wood Johnson Foundation and support from several leading health organizations,
convened a conference that was rich with historic significance and potential.
This meeting brought together, for the first time, representatives from leading
national and grassroots organizations addressing the needs of the chronically ill and
people with disabilities. Despite the commonality of their interests, the health and
disability communities have been largely independent in their advocacy on behalf of
needed health reforms. The conference was designed to "build bridges" between
these communities to identify: (1) needed solutions to the health care problems
facing their constituents and, (2) common ground for joint advocacy in development
of our nation's final reform package.
The gathering was structured as a summit, where everyone had an opportunity
to participate and contribute. In addition to major presentations, there were
intensive break-out sessions in which participants worked together to iron out
principles of agreement and plan concerted action steps.
The outcome was never intended to be an endorsement of any particular piece
of legislation. Rather, the meeting was designed to produce a common road map
that would enable the disability and chronic illness communities to steer together
through the legislative process to reach this ultimate aim: the passage of a health
reform package that will responsibly serve the needs of their constituencies and all
Americans.
Indeed, the issues that are most important to their constituents - such as the
elimination of pre-existing condition exclusions from health coverage, the assurance
of coverage portability and the inclusion of a full range of basic benefits, from
prevention services to long-term care - are issues that touch all citizens. Every
American is vulnerable to the deficiencies of our current health care system, and
that vulnerability only intensifies for those already ill or disabled.
The meeting certainly possessed a sense of urgency. Participants generally
agreed that the current public policy debate presented our best chance, finally, to
significantly improve the country's health system. Clearly, it was deemed to be the
time to put aside any differences between the health and disability communities
and focus on those mutual, critical interests that unite them. The stakes are too
high for provincialism.
It is my hope that this conference was merely the first in an extended campaign
of cooperation among the disability and chronic illness groups. Together, these
groups represent the needs of all people and can be an enormously potent voice for
those at the center of our reform efforts - health care consumers.
Joseph C. Isaacs
President
National Health Council
V
The History of Discrimination
Allan I. Bergman, Director of Federal/State Relations,
United Cerebral Palsy Associations, Inc.
A
llan Bergman recounted the long
Trouble Ahead
struggle of people with disabilities
to overcome discrimination in
However, changes in attitude haven't
health care. For years, people with
pervaded the health insurance system.
disabilities could access health care in
Indeed, part of the reason insurers
only one place, he said: institutions,
exclude people with disabilities from
"places of segregation, isolation,
coverage is a legacy of the era of
congregation and dependency."
institutionalization, Bergman said.
Insurers reason that since disabled
people have always been cared for by
medical professionals, they must be ill.
Genetic Testing could allow
As a result, insurers often unfairly label
insurers to exclude people on
people with disabilities as ill, and charge
the basis of their genes.
them higher premiums - if they grant
coverage at all.
The Human Genome Project,
Bergman warned, will greatly complicate
The prevailing attitude was: "Keep
the issue of pre-existing conditions,
them with their own kind. They need to
because genetic testing could allow
be protected from society, and society
insurers to exclude people on the basis of
needs to be protected from them,"
their genes. "Once this information gets
Bergman said. This view was the
into the system, it isn't going to be used
backdrop for 120 years of American
to help you," Bergman said. "It's going to
policy on disability.
be used against you, not only in health
But attitudes changed in the 1970s
insurance, but in life insurance and all
with the growth of independent living
the other actuarial prediction tables.
centers and self-advocacy.
We're all vulnerable."
Deinstitutionalization brought disabled
people back into the community. And in
Why We Need Health Care Reform
the 1980s, the country turned to
individual supports and family supports.
Bergman enumerated a list of problems
"Now day care centers, recreation
in our current health care system,
centers, schools, employment places and
including:
housing are the same places for
Little emphasis on preventive care.
everybody," Bergman said. "We tailor
Lack of insurance portability. A
individual supports to assist people to be
February 1994 survey of people being
as independent as possible."
served by independent living centers
"found that more than 35 percent had
been unable to change jobs because of
concerns about being covered for pre-
existing conditions," Bergman said.
1
Poor access to health care for children.
"Because without comprehensive health
Nine and a half million children, most
care for all Americans with chronic
of whom are poor, lack insurance,
illnesses and disabilities, we're in
Bergman said. "If your socioeconomic
trouble, and I would predict a
status is low, you have twice as high a
resurgence of the institution and the
probability of low birth weight; three
nursing home as the place for continuity
times the probability of delayed
of care by the year 2000."
immunization; and two to three times
the likelihood of severe disability."
Acute care bias in plan coverage.
Insurers still define health as the
absence of symptoms or illness.
Insurance Exclusion:
"People with disabilities or chronic
A Personal Issue for All of Us
illnesses are going to have symptoms,"
Bergman said. "This acute care bias
Allan Bergman related the following
means limited services, time-limited
personal story about disability and
insurance exclusion.
visits, dollar limits and minimal to no
long-term services."
"I
have a daughter 29-years old. When
Lack of parity in coverage for mental
Dina was born, I was a graduate student.
health services.
Six weeks after her birth, she was in severe
congestive heart failure. We rushed her by
Bergman also criticized Medicare
ambulance to the hospital.
and Medicaid, both of which retain an
"I had health insurance, but as soon as
acute care bias. "The generic notion of
the company found out Dina had a
disability in the Medicare Act was
congenital heart defect, they stopped
'hopeless, helpless, eternally dependent
paying. They paid for the delivery and for
and homebound," he said.
the first days of her newborn care in the
"Unfortunately, Medicare continues to
hospital.
be the touchstone that the private
"Eight months later, I was $124,000 in
insurance industry refers to." The
debt. There was no Medicaid because this
program has a limited scope of benefits,
was 1964. There was no substantive
no prescription drug coverage and no
maternal/child health program. There was
recognition of independence and function
only one community organization that was
as health outcomes.
at all responsive, and that was the March of
Dimes. They gave us $1,000. It was like
As for Medicaid, he said inadequate
manna from heaven.
reimbursement rates result in limited
access to care, particularly to specialists,
"That financial catastrophe took its
and the mandated services are a long
toll on our family for 10 years. Dina's a
wonderful young lady. She's moved to her
way from comprehensive benefits.
own apartment. She has a high quality of
life. Fortunately, she works for the federal
A Call to Arms
government, and she's in a mass risk pool.
"Let me suggest for those of you who
"If we're serious about real rights from
think you are above pre-existing condition
an ADA [Americans with Disabilities
exclusions that none of us are. We are all
Act] perspective, we have no choice but
vulnerable."
to rally, to mobilize and create a
different health care environment for the
future," Bergman concluded.
2
The Community Response
Robert Silverstein, Staff Director, Senate Subcommittee on Disability Policy
0
pening with a theme that was
picked up by several other
If health care reform legislation
speakers during the course of the
meets the needs of people with
day, Robert Silverstein characterized
disabilities, it will meet the
the Americans with Disabilities Act's
(ADA's) fundamental precept:
needs of all Americans.
Disability is a natural part of the
human experience that in no way
diminishes the fundamental right of
With that in mind, Silverstein laid
individuals with disabilities to live
out the basic components of health care
independently, enjoy self-détermination,
reform from a disability perspective.
make choices, contribute to society,
Some of these, such as portability of
pursue meaningful careers and enjoy full
coverage and elimination of pre-existing
inclusion and integration in all aspects of
condition exclusions, echoed Bergman's
American society.
presentation. Among Silverstein's other
President Clinton, Silverstein said,
priorities are:
has called for the establishment of a
Universal coverage. Affordable,
national disability policy based on the
quality health care for all Americans
three basic creeds of the ADA:
that can never be taken away.
"inclusion, not exclusion; independence,
Preserving civil rights by making sure
not dependence; and empowerment, not
that every entity in the health care
paternalism."
system is subject to either Section 504
Silverstein predicted that without
of the Rehabilitation Act or the ADA.
comprehensive health reform, the
Access to specialists and other
president's objective and many of the
appropriate providers. Gatekeepers
objectives of the ADA - particularly
must be qualified and sensitive to the
with respect to equal employment
health needs of people with disabilities.
opportunity - will not be achieved for
This means that in certain
millions of Americans with disabilities.
circumstances gatekeepers must be
specialists or interdisciplinary teams.
A Checklist for Reform
No lifetime caps on coverage. "I
Because people with disabilities are a
checked my thesaurus the other day
microcosm of America's health care
under the word insurance," Silverstein
needs, they serve as a good litmus test
said. "Protection, security, guarantee,
for measuring the adequacy of health
and coverage. That's what insurance is.
care reform, Silverstein said. "If we can
It's not a policy that says, when you
craft health care reform legislation that
get sick, your lifetime cap for your
meets the needs of people with
illness goes down from $1 million to
disabilities, we can be certain that we
$5,000. That's not protection. That's
will meet the needs of all Americans."
not a guarantee. It's not security. And
it sure isn't coverage."
3
A guaranteed and specified
comprehensive benefit package set out
in health reform legislation, not
The Danger of Denying Specialty Care
determined after passage. "We need a
system for delivery of care that will
To convey the damage that can be done by
hold down spiraling health care costs,
unqualified health care gatekeepers, Robert
but we must make sure that it does SO
Silverstein told the following story.
in a manner that does not deny
"T
his is a story of a man who became
medically necessary or appropriate
spinal chord injured after an accident.
services to people," Bergman argued.
He received excellent rehabilitation
"What good is it if we have a Cadillac
services and eventually moved into his
basic benefit package and those
own apartment and became employed.
services do not reach individuals with
"A year later, he noticed a small skin
chronic illnesses or disabilities in a
breakdown on his back. He went to his
manner to which they're entitled?"
primary care physician - a general
Silverstein also called for community
practitioner who was the gatekeeper to
rating, reasonable limits on out-of-pocket
specialist care and the person designated
to keep costs down for his health plan. The
expenses, incentives for insurance plans
doctor treated him with medication,
to keep people with disabilities, health
covered the breakdown and sent him on his
plan accountability mechanisms that
way.
focus on the needs of vulnerable
"However, the dressing was the wrong
populations, and elimination of work
type. It caused further breakdown. Three
disincentives, among other changes.
days later, this young man had massive
infection and had to be rushed to the
Threats of Transition
emergency room.
"The problem now required acute care
Finally, Silverstein talked about the
and a long period of bed rest. Even after
need for protective rules to govern the
months of treatment and recovery, he had
transition from our current health care
trouble.
system to the reformed one that will
"The moral: If this young man had
take shape over the next several years.
been referred to a specialist in spinal chord
"If health plans are figuring out how
injury, or had his gatekeeper possessed
to position themselves in the interim to
the proper knowledge, in most cases he
get ready for the future, who are they
would have been treated appropriately.
going to throw off the rolls first?" he
This would not have cost our health care
asked. "I think the answer to that
system thousands of dollars."
question is obvious: those with
disabilities and those with chronic
illnesses."
4
Universal Coverage: Can It Be Attained?
Ronald Pollack, Executive Director, Families USA
R
onald Pollack underlined the
to make sure that insurance is
importance of achieving universal
affordable," Pollack said. The likelihood
coverage by pointing out the
of that happening is slim, he predicted.
scope of the problem. "More than 50
million people, over the course of any
year, lose or lack health insurance for at
least part of the year," he said. "We're
The odds of achieving universal
talking about one out of five Americans."
coverage are better than 50/50,
But universal coverage is not only
but not a lot better.
vital in its own right; it is a critical
prerequisite to the achievement of other
health reform goals, he said. "I don't
think there's any question that without
However, the president's proposal
universal coverage, long-term care won't
faces difficulties of its own, particularly
be on the table."
from small business advocates who
oppose his plan for employer-based
However, Pollack added, "I believe
insurance. "Small business associations
that we have a serious shot at getting
have really been working the hustings
universal coverage. The reason I think
and trying to get their members to talk
we have such an extraordinary shot -
to as many members of Congress as
perhaps the best we'll ever have - is the
possible," Pollack said. "They're having
president's and first lady's commitment
an extraordinary impact."
to getting us there."
The chronic illness and disability
communities must fight back. "We have
A Fork in the Road
to speak to the small business
The question is how to achieve that goal.
community about why the proposal that
Pollack outlined the two main
is currently pending before Congress
alternatives: The administration
makes a great deal of sense for small
proposes to expand the nation's current,
business," Pollack said. For example,
employer-based system SO that every
most small businesses have very little
employer provides health coverage. In
bargaining power with insurance
contrast, some members of Congress are
companies and HMOs, he explained.
championing a plan to achieve universal
Health care coverage purchasing
alliances would allow businesses to band
coverage through individual insurance
purchases. Expansion of our employer-
together to negotiate better deals with
based insurance system is far easier than
insurance companies and HMOs than
the latter proposal, Pollack said, mainly
they can individually.
due to financing considerations.
In addition, under a comprehensive
"If we don't have employers paying
approach such as the administration's
for employer-based health care coverage,
proposal, small businesses would reap a
then the federal government will have to
number of other advantages: They would
come up with very significant subsidies
no longer have to pay for cost shifting.
5
They would be assured that their
premiums would rise no faster than
inflation. They would benefit from
Limiting Individuals' Premium Costs
significantly reduced administrative
"
costs. And some of them would gain
"A
family or an individual pay no more
subsidies to help pay for insurance,
than 3.9 percent of income for
Pollack said.
premiums under the Administration's
proposal. In contrast, the rate under the
He labeled opposition from small
managed competition approach offered by
business the biggest impediment to
Rep. Cooper could reach almost 19 percent
universal coverage. "We can't ignore it,"
or the equivalent of more than 10 weeks
he said. "Certainly, Congress is not
worth of pre-tax income for premiums.
going to ignore that opposition. So when
That doesn't include deductibles, co-pays
you make presentations in your local
and costs for uncovered services. That's
communities, make sure that the small
simply unaffordable.
business owners in your community
understand what's in real health reform
for them."
More than 50 million people, over
the course of any year, lose or lack
health insurance for at least
Overcoming the Opposition
part of the year.
In closing, Pollack predicted that the
odds of achieving universal coverage are
better than 50/50, but not a lot better.
"Subsidies would correct this inequity,
"We are going to get universal coverage
but there's a rub: You have to come up with
new revenue - taxes. Members of
if we fight for it, but if this is a spectator
Congress have been extremely loathe to
sport, we're going to lose," he said. "And
impose new taxation, other than in some
we don't even get to first base on long-
key areas like tobacco.
term care unless we get universal
coverage."
"Therefore, the practical way to get to
universal coverage is through an employer-
"I pray that all of you go meet with
based effort that builds on our current
your members of Congress," Pollack
system. Of course, for those people who
concluded. "They really need to hear
don't work, there still needs to be adequate
from you. They're saying that they're
subsidies. But most of the heavy lifting is
hearing from a lot of the special interest
already done for you without having to
groups, but they're not hearing
increase taxes.
significantly from the consumers of
"From a practical standpoint, it makes
health care - those who pay for health
abundant sense."
care, those who need health care. You
can personalize this issue. And unless
you do, we're not going to get to yes."
6
A Continuum of Care: The Long-Term Care Problem
Joshua M. Wiener, PhD, Senior Fellow, The Brookings Institution
J
oshua Wiener discussed the
will be a challenge to create a system
Administration's plan for achieving
that meets the different needs of the
long-term care for people with
elderly and non-elderly disabled
chronic illnesses. With the exception of
populations. "Eligibility screens don't
the politically impalatable single payer
work as well for the non-elderly
option, the President's proposal is the
disabled," Wiener said. "The non-elderly
only other option which includes a
disabled need an extraordinarily wide
serious long-term care component.
range of services. And advocates
The first plank creates a home
strongly prefer a consumer-directed
care program available to all severely
rather than an agency-directed set of
disabled people, regardless of age and
services."
financial status, he said. This program
Wiener said fiscal realities will
gives states flexibility in putting
require that initiatives be a mixture of
together a service package tailored to
public sector and private sector, of
individuals, but expenditures are capped,
means-tested programs and social
and there is no legal entitlement to
insurance approaches.
services. When fully implemented in
2002, it is estimated that the program
will spend $38 billion more for home care
than would otherwise be spent.
No new long-term care
The second part of the program
initiatives can be passed
allows Medicaid nursing home patients
without some fail-safe
to keep an extra $20 a month in income.
mechanisms to ensure that
It includes new regulations for private
the financial risk will not
long-term care insurance and a tax
exceed a certain level.
clarification to treat this insurance more
like health insurance, Wiener said. It
also includes tax credits for long-term
service expenditures of the working non-
elderly disabled.
Legislators' Fiscal Fears
One of the key issues in providing
Bridging the Age Gap
long-term care will be cost control.
"Policy makers are SO frightened by the
"Almost all previous debates about
expenditure uncertainties," Wiener said,
long-term care have focused solely on
"that no new long-term care initiatives
the elderly," Wiener said. "Those days
can be passed without some fail-safe
are past. In the current debate, the non-
mechanisms to ensure that the financial
elderly disabled have a seat at the policy
risk will not exceed a certain level."
table."
However, one criticism of the Clinton
The administration would like to
plan is that it doesn't coordinate acute
make long-term care accessible to
and long-term care. Non-elderly patients
persons of all ages, Wiener said, but it
will get their acute care services through
7
private insurance. The elderly will
continue to get theirs through Medicare.
And long-term care services will be
Why Reform Should Include
administered through the states.
Long-Term Care
"Acute care is the 800 pound gorilla,"
"
Wiener explained. "Long-term care is a
"First,the be fixed," Joshua Wiener said.
current system is broken and
much smaller component of the health
care system. If we turn over long-term
"We have a strong institutional bias in our
financing system, along with welfare
care money to acute care providers, to
dependence and routine catastrophic out-
acute care health plans, they will just
of-pocket costs. The services that
gobble it up."
chronically ill and disabled people need are
often not available.
Tempered Optimism
In closing, Wiener urged participants
If we turn over long-term care
to strongly lobby Capitol Hill because
money to acute care providers
there is a real possibility that long-term
they will just gobble it up.
care will not be included in a health care
bill.
"Over the long run," Wiener said, "I
"Second, one of the lessons of the
am optimistic that we will get a system
Medicare Catastrophic Coverage Act of
that will provide long-term care because,
1988 is that the elderly care more about
as Winston Churchill liked to say about
long-term care benefits than they do about
expansion of acute care services. In
the American people, you can always
addition, the elderly care a great deal about
count on them to do the right thing, after
prescription drug coverage, as was evident
they've tried everything else."
I
in the language of that Act.
"Third, if we exclude long-term care
services from the global budget and from
other cost-containment mechanisms, we
create a strong incentive for acute care
providers to push as many services to as
many people as possible outside the acute
care arena, and call that long-term care.
But if there is no major new financing
method, the cost burden will be on disabled
people, who won't have a way of gaining
the services they need.
"Finally, surveys by the American
Association of Retired Persons and the
Consumers Union indicate much stronger
support for health care reform with long-
term care in the package than ifit's outside
the package."
8
A Continuum of Care:
The End to the "Acute Care" Bias?
Bob Griss, Director, Center on Disability and Health
0
ur health care system's acute
coverage for the care they need, they
care bias, Bob Griss argued,
often wind up in the hospital.
contributes significantly to
"The disabled population represents
America's health care crisis.
about 14 percent of the non-
institutionalized population and yet
accounts for about 58 percent of short-
The disabled population
stay hospital beds," Griss said. "It's not
that people with disabilities are
represents about 14 percent of
intrinsically high users of health care.
the non-institutionalized
We do not have a health care system that
population and yet accounts for
focuses on chronic care management.
about 58 percent of short-stay
And until we do, we're not going to get a
hospital beds.
handle on the acute care crisis."
Revising the Big Picture
"We do not have effective chronic
To change the system, Griss said,
care management. We do not have an
advocates must reframe the terms of the
emphasis on prevention services. We do
health care debate.
not have an emphasis on rehabilitation
If we're just talking about adding
services," he said. "I suggest to you that
onto the cost-spiralling acute care system
the failure to provide comprehensive
or lumping on a long-term care
health care, particularly around
component, we're never going to
prevention and rehabilitation services, is
convince policy makers that there's
the main contributor to the expansion in
acute health care utilization."
enough money. Only by rethinking the
logic of the health care delivery system
The acute care bias particularly
can we begin to open up the debate about
affects people with disabilities and
what the concept of health means, how
chronic illnesses. "Eighty-one million
health care costs can be distributed in an
Americans under the age of 65 have
equitable way and what kind of delivery
chronic health conditions that private
system allows consumers to play a larger
insurance companies typically medically
role in choosing their providers.
underwrite against," Griss said. "That's
one-third of the American population."
These are big questions. But Griss
raised an even larger one: Revising the
Even those who have managed to
nation's concept of health, he argued,
obtain comprehensive benefit packages
means we must consider health care as a
today could be vulnerable due to a
civil right. "We must restructure the
change in health or job status, he pointed
health care delivery system and the
out.
health care financing system SO that
Because many people with chronic
health is recognized as a right," he said.
illnesses and disabilities cannot obtain
"It is as important as our legal and
9
political status in participating in society.
Without health, you don't have
participation."
Who Is the "Average Patient?"
Griss explained that the major
reform bills introduced in Congress
"Y
ou can't often tell whether somebody
has a disability or a chronic health
preserve the existing dichotomy
condition," Bob Griss said. "I happen to
between acute care and long-term care.
have an immune deficiency which requires
Disability advocates, he said, must not
a gamma globulin infusion every month.
legitimate these distinctions, because
That costs about $1,000 on the marketplace.
doing SO is guaranteed to be a losing
Without it, I would develop a disability
game. Long-term care must be seen as a
that could be life-threatening.
component in the continuum of care to
which we have access.
A prevention agenda for people
Prevention: A Prime Example
with disabilities is really lacking in
the current health care debate.
Griss closed by emphasizing
prevention services as a key area of
importance. "A prevention agenda for
"Fortunately, I have national health
people with disabilities is really lacking
insurance. What I mean is, I'm a patient at
in the current health care debate," Griss
the National Institutes of Health, and in
said. "There is a clear recognition that
exchange for my blood, which they do
immunizations for children, prenatal care
research on, I get free treatment.
for pregnant women, and cancer
"This experience has raised my
screenings for older adults make cost-
expectations about the kind of health care
effective sense for the total population.
system all Americans deserve. We need
But we don't hear about prevention of
more than a health care system that tries
secondary disabilities and medical
to limit the benefits package to core services
based on the so-called average patient's
complications for people with chronic
health care needs.
illness and disability."
"Basic health care must be defined by
The need for action is clear, Griss
what is medically necessary to maintain an
said. "We need to expose the
individual's health, including his or her
preventable conditions that occur as
functional abilities.
medical complications or secondary
"If we allow our definition of health to
disabilities when appropriate health care
be limited to what is medically necessary
is not provided. Unless we get this issue
for the so-called 'average' patient, we are
on the public agenda, I don't think we're
doing a tremendous disservice, not only to
going to be able to effectively combat the
people with disabilities and chronic illness
acute care bias."
today, but to the total population. Because
at some point, everybody is going to have
a chronic condition, a chronic disability or
a chronic illness."
10
A Call to Action
Tony Coelho, Chairman, President's Committee on Employment
of People with Disabilities
F
ormer Congressman Tony Coelho
Sickness, injury, medical history, health
began his luncheon keynote
status or other factors must not be used
address by emphasizing the
to deny anyone coverage.
importance of grassroots advocacy
Listing a series of other
in the legislative process.
requirements for reform, Coelho said
"The Americans with Disabilities Act
that health coverage should:
(ADA) was adopted by the Congress in
Be portable. No one should ever have
record time," he said. "It was a major
to fear losing coverage if they change
piece of legislation affecting nearly 50
jobs or get laid off.
million Americans, but most members of
Congress voted for the ADA not
Provide for long-term care.
knowing what was really in it. The
Include coverage for catastrophic
reason: the grassroots community was
illness.
out there insisting that ADA be
Include personal assistance services.
adopted."
"This is the highest priority of a large
Grassroots advocacy will be similarly
segment of the disability community,"
vital in the health care debate, Coelho
Coelho said. "ADA and other
said. "It's critically important for those
guarantees of civil rights don't mean
in the chronic illness and disability
much to someone who can't get out of
communities to give this issue the same
bed in the morning."
degree of urgency and support that ADA
Provide insured access to specialists,
received."
drugs and new medical technologies.
Viewing health care legislation is
Establish parity for treatment of
part of the ADA's unfinished business,
mental illnesses. "There should be no
he said. "It doesn't do us any good to
discrimination in medical treatment
have our basic rights and not have the
against people with psychiatric or
ability to exercise them. Health care
mental illness," Coelho said.
provides us with that ability."
The Key to Success
Coelho's Health Care Platform
Coelho warned against discussing
"We shouldn't have to fear that
the details of various different health
because we have a certain chronic
care bills when lobbying Congress.
condition or disability we may not be
Instead, he said it's important to be
eligible for health care insurance,"
emotional. "Talk about personal
Coelho said.
experiences. Talk about the impact
Any health care reform package, he
health care has on you, your loved ones
argued, should provide universal
or your friends. If you're willing to do
coverage that can never be taken away.
that, you'll have an impact."
Insurance must be unconditionally
"It's not easy to talk about the
available to all - without exception.
discomforts, the prejudices, the
11
discriminations that you face," Coelho
acknowledged, "but that's what has an
impact."
Personal Experiences Can
He finished with a call to action: "We
Influence Policy
can have a tremendous impact on this
country and the lives of SO many people
Tony Coelho illustrated the power of
if you elevate the emotion of this issue, if
compelling personal stories to have an
you're willing to go out and be
impact on legislators.
committed, if you get your people as
aggressively involved as they were on
"WhenIked about "WhenIked about on ADA in the Senate,
when I got kicked out
ADA."
of the seminary because of my epilepsy.
"There will be health care legislation
The Catholic church did not permit
this year," Coelho said. "What's in it
epileptics to be priests because we were
depends on you."
considered possessed. And my parents
rejected my epilepsy because they believed
the church.
"For 29 years, my parents and I did
In summary, there are only six
not discuss my epilepsy, even though there
was nobody in this country who was more
words you have to remember:
vocal about disabilities than I. Finally, in
No exceptions. No
December of last year, the barrier was
cancellations. No conditions.
broken because of a reporter. My wife and
I immediately met with my parents, and
we had the best Christmas I've had in 29
years.
"At the end of my Senate testimony on
the ADA, Senator Hatch was in tears. He
said to me, 'I did not intend to support
ADA, but I will because of what you said.'
And he kept his word, even though he was
criticized severely by some of his
colleagues.
"When you talk about stories that are
real, people understand. They react. They
feel.
"If you're willing to talk about what
impacts you, your children, your parents
or other loved ones, I guarantee your
elected officials will respond."
12
Storming the Gates for Health Care Reform:
Developing Action Steps
I
n the afternoon session, attendees
Should we utilize the strengths of
broke up into three groups, each of
each of the above groups in a joint
which was asked to answer the
effort (e.g., the NHC for public
following questions.
relations, the CCD for lobbying and
1. Can we in the chronic health and
the "Real" coalition for building
disability communities agree to
grassroots support)?
jointly advocate on behalf of the
How should we jointly address the
following three principles for health
underwriting of whatever approach
care reform?
is taken?
Reforms must provide universal
3. How do we define our specific action
coverage. This means no
agenda to get the job done?
exclusionary clauses and full
Suggestions include:
coverage portability.
A letter to policy makers signed
Reforms must provide a full
jointly by chronic illness and
continuum of care. This includes
disability organizations outlining
appropriate access to specialists,
our three principles.
prevention services, rehabilitation
Joint visits to members on Capitol
services, prescription drugs,
Hill or in their district offices.
durable medical equipment,
personal assistive services and long-
A series of briefings for
term care.
congressional members and staff.
Reforms must promote continued
Well-placed newspaper ads
medical progress. Effective
conveying our joint message on
technological advances that may
health care reform.
provide improved diagnostics,
Letters to the editor or op-ed pieces
effective treatments or cures should
from health and disability
not be sacrificed in our zeal to
community leaders to major
contain costs.
newspapers and journals
2. How can the chronic illness and
nationwide.
disability communities best send a
A letter-writing campaign
unified message to policy makers?
generated from an individual
Should we coordinate efforts
organization's constituencies.
through a single organization/
After 90 minutes of small group
campaign (e.g., the National Health
discussion, the conferees reconvened and
Council, the Consortium for Citizens
the three group leaders read their
with Disabilities or the "Real
conclusions.
Health Care for All" coalition)?
13
Question 1
Organizations should work together to
develop a grassroots mailing list in
The break-out groups reached general
order to generate local level activities
agreement on this question, but some
in support of needed reforms.
language was amended and some
emphases were added:
Organizations should utilize the state
coordinator lists that have already
One group defined a "continuum of
been developed by the "Real Health
care" requirement as any health care
Care for All" coalition and involve
that an individual needs.
volunteers from their own affiliations.
One group rephrased their universal
coverage statement as, "Reforms must
provide universal coverage because
Question 3
health problems and disabilities are a
Suggestions for the action agenda
natural part of the human experience."
included:
Another group said " ..universal
Immediately sending a letter to policy
coverage, regardless of age, income,
makers, signed jointly by the chronic
current health condition and
illness and disability organizations.
employment status."
Using newspaper ads and letters to the
Groups stipulated that the benefits
editor to convey a joint message.
package must be defined in the
Target local papers, since many
legislation. They were uncomfortable
members of Congress read their home
with proposals that would leave such
news, and also target Roll Call, since
details until later.
members and staff on Capitol Hill read
Groups also emphasized the need to
it religiously.
provide for mental health services,
Targeting radio talk shows on a local
assistive technology, long-term care
level.
services and consumer involvement at
all levels of the health care system.
Identifying employers who would be
willing to make Congressional visits to
discuss their positive experiences
Question 2
covering productive, hard-working,
Groups suggested the following ideas to
chronically ill or disabled employees.
help their organizations work together
Asking labor unions which are
and more effectively communicate their
collaborating on television commercials
advocacy messages to policy makers and
to expand these commercials to include
the public:
the interests of the chronic illness and
Disability organizations should get
disability communities.
involved in statewide health care
Setting up an 800 number that could
coalitions which are perhaps not now
tie all of these advocacy efforts
focusing on disability issues.
together.
Materials from the recently created
"Real Health Care for All" campaign
should be made available in camera-
ready form to health and disability
groups for use in their newsletters.
14
Summary Remarks
Randall Rutta, Conference Chair, and Vice President of Government Relations,
National Easter Seal Society
R
andall Rutta wrapped up the
have had principles in place for a year
afternoon session by reiterating
that meet all of our needs and then some.
many of the day's main themes.
Let's make sure we have a chance to
"There's clearly a need to get our
operationalize those principles in
message across, and that message should
legislation by convincing people that
be a human message," he said. "We need
there's a health care crisis and that a
to address the human experience of
response should include universal
health care, the discrimination that takes
coverage and access to a continuum of
place and the gaps in financing and
benefits."
-
coverage."
Rutta spoke of the need for greater
consumer empowerment SO that people
with disabilities and their families are
We need to address the human
active participants in health care
experience of health care, the
delivery and financing choices. And he
discrimination that takes place
said a continuum of care must include an
and the gaps in financing and
expanded range of benefits that address
coverage.
both mental and physical services.
"There is an interest in building on
the work of the Real Health Care for All
campaign to enact health care reform
legislation that addresses the needs of
people with disabilities and their
families," Rutta said. "You don't have to
buy it wholesale, but use the campaign
for what it's worth. Use its materials.
Take advantage of its network."
Rutta called for newspaper and radio
outreach, as well as a joint letter to
policy makers. "There were over 100
groups participating in this conference
throughout the day," he said. "Let's give
them an opportunity to sign on to a
letter - soon."
He concluded by urging fast action.
"What most clearly comes across is the
need to get going," he said. "The
National Health Council, the Consortium
for Citizens with Disabilities, and others
15
CONSENSUS STATEMENT
Health Care and Discrimination:
The Final Hurdle
n the past 30 years, our nation
can do that. Health reform is
has outlawed discrimination
needed now or more people will
based on race, religion, gender,
fall through the ever-widening
national origin and age. Yet, we
cracks in our current system.
continue to sanction discrimination
The disability and chronic
in health care against people with
condition communities agree that
chronic health conditions and
the following four principles
disabilities. All Americans are but
provide the foundation for real
a serious illness or injury away
health care reform:
from becoming part of these
Reform must provide universal
populations.
coverage.
Pre-existing condition
Reform must provide a full
exclusions, lack of portability of
range of mental and physical
coverage, inadequate access to
health care services including
specialty care, and exorbitant out-
preventive, acute, chronic,
of-pocket costs have regulated
rehabilitative and long-term
millions of people with chronic
care.
illnesses and disabilities to second-
class citizenry and kept them from
Reform must promote medical
their rightful place in American
progress through support of
society.
research and development.
The Americans with
Reform must involve consumers
Disabilities Act (ADA) helps
at all levels of decision-making.
protect these vulnerable
By endorsing these four basic
populations from discrimination in
principles, policymakers would
many different facets of life. It
strike a blow for justice and
does not, however, fully protect
ensure that no one would lack
individuals when it comes to
access to care because of factors
health care - only comprehensive
beyond their control.
reform of the health care system
More
For more information contact Jack Pope or Donna Ledder at the
National Health Council (202) 785-3910
This statement is supported by the following organizations:
AIDS Action Council
Alzheimer's Association
American Association of University Affiliated Programs
Association of Mental Retardation
American Cancer Society
American Diabetes Association
American Kidney Fund
American Liver Foundation
American Lung Association
American Occupational Therapy Association
American Social Health Association
American-Speech-Language-Hearing Association
Amyotrophic Lateral Sclerosis Association
Arthritis Foundation
Asthma and Allergy Foundation of America
Center on Disability and Health
C.H.A.D.D. (Children and Adults with Attention Deficit Disorders)
Cystic Fibrosis Foundation of America
Epilepsy Foundation of America
Epilepsy Foundation of Greater Knoxville
Guillain-Barre Syndrome Foundation International
Huntington's Disease Society of America
International Association of Psychosocial and Rehabilitation Services
Interstitial Cystitis Association
March of Dimes Birth Defects Foundation
Myasthenia Gravis Foundation
National Association for Medical Equipment Services
National Association of State Directors of Developmental Disability Services
National Down Syndrome Society
National Easter Seal Society
National Head Injury Foundation
National Mental Health Association
National Multiple Sclerosis Society
National Neurofibromatosis Foundation
National Osteoporosis Foundation
National Parent Network on Disability
National Psoriasis Foundation
National Society to Prevent Blindness
National Tuberous Sclerosis Association
Paralyzed Veterans of America
Prevent Blindness America
RP Foundation Fighting Blindness
Sjogren's Syndrome Foundation
Spina Bifida Association of America
The ARC
The Joseph P. Kennedy Foundation
United Cerebral Palsy Association, Inc.
United Ostomy Association
BACKGROUND PAPER
Health Reform and the Americans with
Disabilities Act
M
ore than most, people with
changes to employers' health care
chronic health conditions
package, higher out-of-pocket
and disabilities experience
expenditures, and reduced life-time
discrimination in health care.
maximums. These trends are creating a
Discriminatory practices, such as pre-
sense of crisis, especially among
existing condition exclusions, lack of
previously unaffected middle-class
coverage portability, inadequate access
families.
to specialty care, and exorbitant out-of-
Even without catastrophic illness or
pocket costs, diminish the ability of these
disability, millions of Americans share
populations to lead productive lives.
the burdens and fears of being uninsured
Pre-existing condition exclusions
or underinsured, being restricted from
may be equivalent to lack of health
access to appropriate and high quality
insurance coverage for a person with
care, and spending substantial portions
diabetes. This person likely will then
of their income for medical care.
have to pay for his or her insulin and
other needed medical devices out-of-
Uninsured
pocket - often at an unaffordable price.
For the father of a child with cerebral
According to the United States Bureau
palsy, the lack of portability of health
of Labor Statistics, 37 million U.S.
insurance coverage means he must
citizens, representing fifteen percent of
remain in his job to maintain his health
the population, have no health insurance
benefits even though a better position
coverage. Eighty-seven percent of
with a higher salary may be available.
nonelderly uninsured people are
For a person with epilepsy, coverage for
employed (56 percent) or are dependents
prescription medications that control
of workers (31 percent). Most are
seizures means the ability to remain
employed by companies with 25 or fewer
seizure-free or have fewer seizures per
workers, part-time workers, or self-
day thereby enabling him or her to
employed.
attend school classes or hold a job. For a
Many small businesses do not
young mother with multiple sclerosis,
provide health care benefits for their
assistive technology may give her the
workers because the number of
mobility to care for her child and her
employees does not provide a viable
household.
basis for spreading risks under current
In reality, every citizen is vulnerable
insurance options. Moreover, part-time
to illness, injury, loss of function, aging,
workers are typically ineligible for their
or birth of a child with a chronic
employer's benefits. People with
condition or disability. Increasingly,
disabilities or chronic conditions who are
people know of someone or have
unemployed are routinely denied
experienced themselves, reduced health
insurance coverage and/or are subjected
care benefits, policy cancellations,
to premium rates SO high as to be out-of-
reach.
18
Underinsurance
such benefits are not provided and are
expensive, employees unable to afford
In recent years, "underinsurance" has
them may go untreated. This could lead
become increasingly problematic for
to further complications and greater
people with disabilities or chronic
expenses as the course of treatment
conditions. The term "underinsurance"
often becomes more intensive and the
describes a variety of insurance practices
condition more severe.
that result in partial health care
coverage. Such practices include pre-
To measure the impact of
existing condition exclusions; denial or
underinsurance among people with
restrictions on reimbursement for
disabilities and chronic conditions,
specific treatments or prescription
researchers have examined the
drugs; and exclusion of entire categories
percentages of income that individuals
of coverage such as mental health
pay for medical services. In a 1990 study
services and rehabilitation.
conducted by the Berkeley Planning
Associates and the World Institute on
Medical and technological advances
Disability, over 31 percent of privately
have increased life expectancy for people
insured people who describe their health
who sustain serious injuries or illnesses.
status as "poor," said they expect to
Ironically, these life-saving advances in
spend amounts three times higher than
acute medical care have contributed to
people who described their health as
the growing need for ongoing and long-
"excellent." An almost identical
term care. Many of these treatments are
conclusion came from a survey of 726
expensive and services needed to sustain
privately insured, working-aged people
quality of life may continue indefinitely.
with disabilities in which more than 16
Researchers believe that these
percent had also been denied
developments have led insurers to
reimbursement for their health services
attempt to minimize associated costs by
claims because of a pre-existing
adopting practices which exclude and
condition clause.
restrict benefits for individuals with such
conditions. Often, these have been the
very benefits needed to maintain health
Managed Care
and independent functioning.
A leading concept associated with
efficiency and cost-containment is
Controlling Costs
"managed care," familiar to most
Americans as the health maintenance
Another reason for the growing problem
organization (HMO) model of health
of underinsurance is that employers are
service delivery. Under a managed care
struggling to control mounting costs of
approach, health care providers would
employee health care benefits. Those
form cooperatives from which employers
who continue to offer them have reduced
and individuals can purchase plans and
their coverage and/or increased
receive care. The assumption is that by
employee co-payments. Mental health
pooling facilities, equipment, and
benefits, for example, have been
administrative costs, more providers.can
dramatically reduced over the past
offer services to more people at lower
decade. Such employer reductions cause
cost than would be possible under
cost-shifting in which previously
traditional third-party reimbursement
available benefits must be borne by
plans.
employees or not provided at all. When
19
Feedback given to voluntary health
care practices are permitted to continue.
and disability organizations by their
Health care reform must be an inclusive
constituents suggests that people with
vehicle, not one that fosters continued
chronic health conditions and disabilities
inequities.
have experienced problems in the
managed care setting. These include
The ADA
misdiagnosis due to lack of access to
needed specialists and worsening of
For decades, public policies have made
conditions due to delays in receiving
great strides toward improved health
specialty care.
and equality of opportunity for all
People with chronic conditions and
Americans, including those with chronic
disabilities must have access to adequate
health conditions and disabilities.
health care to maximize functional
Government has invested billions of
outcomes. This is not always the least
dollars in medical research, education
expensive approach in the short-term,
and employment and other programs
but has been demonstrated to minimize
that promote opportunities for people
more costly consequences associated
with chronic illnesses and disabilities to
with functional loss in the long-term.
pursue personal, family, and community
goals. America's health care system has
evolved over the years, helping millions
Personal Choice
to survive life-threatening illness and
For people with chronic health
injury. But, barriers persist in denying
conditions and disabilities, the health
needed services and supports that enable
care status quo is unacceptable. The
millions of Americans to lead meaningful
challenge, therefore, is to convince
lives. For example, coverage for
healthy Americans, who are generally
rehabilitation services, such as physical
satisfied with their health care, that
or occupational therapy, enables
truly comprehensive reform is needed.
someone to regain partial function of a
The vast majority of Americans seek
limb after cancer surgery. But arbitrary
solutions to health care problems that do
limits withhold the potential for
not interfere with their ability to choose
maximizing the function which could
their medical providers or to direct the
enable that individual to return to work
course of prescribed treatments. Many
or live more independently.
are concerned that proposed cost-
A milestone was reached in 1990
containment strategies will minimize
when the Americans with Disabilities
their ability to access the services they
Act (ADA) was signed into law. The
want.
ADA recognized for the first time that
While recognizing the importance of
people with disabilities, defined to
cost-containment in health care reform,
include those with chronic conditions, are
eliminating discrimination in health care
an equal part of society and have the
delivery and financing is the primary
right to participate fully in all aspects of
goal of persons with chronic health
life. The ADA removed many of the
conditions and disabilities. Therefore,
barriers to employment, public
the challenge for this population is to
accommodations, public services, and
help all Americans understand that while
telecommunications long experienced by
costs must be contained, it cannot be
people with chronic health conditions and
achieved as long as discriminatory health
disabilities.
20
While the ADA provides limited
different benefits or charge higher co-
protections for people with disabilities
payments to people with disabilities or
whose employers provide health care
chronic conditions, if they can prove that
benefits, it fails to prohibit
providing such benefits would, in effect,
discrimination in all aspects of health
create an "undue burden."
insurance. The ADA is an incomplete
The health care insurance
solution to the health care concerns of
exemptions and the employers' broader
this population.
obligations, both referenced in Title I,
have created confusion regarding the
Title V
ADA's intentions for employers. The
"Interim Enforcement Guidance" issued
Health care benefits are addressed in the
by the Equal Employment Opportunities
ADA under Title V, but are incorporated
Commission (EEOC) in June, 1993,
by reference into Title I, Employment
clarified that employers are obligated to
Provisions. Insurance industry practices
provide equal access to health care
in issuing health insurance benefits were
benefits and bear the burden of proof
singled out by Congress for exemption
should there be a challenge. The
from the ADA protections. The
"Guidance" is based upon the principles
exemptions allow insurers to continue
of equal access, continuation of a private
underwriting, classifying, and/or
insurance industry, and elimination of
administering risks as long as their
discriminatory practices. The "Guidance"
practices are based upon sound "risk
appears to strengthen Title I, but the
classification" principles; are not
interpretation leaves open some
inconsistent with state underwriting
important questions.
laws; and are not used as a subterfuge to
evade the purpose of the ADA. By itself,
Title V of the ADA does nothing to
Self-Insured Plans
change the common practices among
For example, (60 percent) of all workers
insurance providers of excluding pre-
with employer-provided health care
existing conditions, limiting coverage for
benefits are covered by "self-insured"
certain procedures, limiting particular
plans operated by the employer. Those
treatments, limiting reimbursements for
plans are not subject to state laws which
certain drugs or procedures, carving out
govern statewide insurance industry
whole categories of services for benefit
practices. Because the ADA defers to
packages, dramatically increasing
state law in this area, self-insured
premiums, or dropping coverage
employers do not have the same
altogether.
obligations as employers who purchase
While these exemptions apply also to
plans from state regulated insurance
Title I, employers, unlike private
carriers. Therefore, it is still unclear as
insurers, have additional obligations
to the specific obligations that self-
under Title I. They must ensure their
insured employers have to employees
employees with disabilities receive equal
with chronic health conditions or
access to all employee benefits, including
disabilities.
health care coverage, if provided.
Many believe that the ADA could
Employers are not required to provide
have a wider impact on banning
health care benefits nor must they
discrimination in health insurance
provide comprehensive coverage.
through provisions pertaining to public
Further, employers may provide
21
services. Title II of the ADA prohibits
denied or lose his or her health insurance
state and local governments from
coverage due to illness or injury.
discriminating on the basis of disability.
However, not all of the health care
Some believe that the government
reform proposals would provide
agencies proposed in some health reform
"universal coverage." The chronic health
plans would be subject to ADA
and disability communities strongly
guidelines regarding nondiscrimination
support the concept of health care as a
on the basis of disability. If accurate, this
right for all, embracing guarantees of
would significantly extend ADA
nondiscrimination in the provision of
protections into the design and delivery
services and access to the types of
of health care.
services and settings appropriate to
The ADA envisions full equality for
restoring and maintaining maximum
people with chronic health conditions and
function and independence.
disabilities. However, it only begins to
eliminate discriminatory practices in
Continuum of Care
health care. Therefore, comprehensive
health reform is needed to realize the
Comprehensiveness of coverage has
ultimate promise of this landmark law.
been described by the Council and
disability groups as a continuum of
physical and mental health care which
The Current Debate
would include preventive, acute, chronic,
Health care reform dominates the
rehabilitative, and long-term care
domestic policy agenda. Clearly, people
services and reflect individual needs and
with chronic health conditions and
choices. Determinations regarding the
disabilities have an enormous stake in
"appropriateness" of services should be
this debate.
made by the individual in treatment, the
family and the health care team, not
In 1992 the National Health Council
health plan administrators. This is
developed a list of principles against
especially important in ensuring that the
which proposed health care reform
desired goal to contain costs does not
legislation could be evaluated. The
dictate undesirable treatment decisions.
Council's Statement of Principles on
Health Care Reform addresses priority
The quality of health care received
issues including access and affordability,
by people with disabilities and chronic
individual responsibility, public
health conditions is negatively affected
education, breadth of coverage and
by the system's general "acute care"
benefits, cost containment, and medical
bias. For patients within these
innovation. (A copy of this statement is
populations, cure and restoration is often
appended.)
not time limited or acute. It entails a
broad range of services on a continuum
Several issues of critical importance
of care to be delivered at appropriate
to people with chronic health conditions
intervals across one's entire life span.
and disabilities have emerged.
The Consortium for Citizens with
Disabilities (CCD), in its principles for
Universal Coverage
health care reform, describes long-term
Broad agreement exists among health
care as integral to the
care consumers that coverage should be
comprehensiveness of care for people
affordable and that no person should be
with disabilities. Such long-term care,
22
CCD believes, should be available where
Some disabilities and chronic
most appropriate to the individual's
conditions render people particularly
needs, whether at home or in the
vulnerable to complications which can
community or at a medical facility. For a
lead to further functional loss and
person with a disability, the term,
secondary disabilities. For example,
"healthy" relates to the ability to
people who use crutches for most of their
maintain or increase functional capacity
lives as a result of polio or spina bifida
over the course of a life time.
may develop joint problems. In some
cases, self-care regimens of diet,
Access to Specialists
exercise, medication and rest will need
routine monitoring, such as for people
The physical aspects of a chronic
with diabetes who require periodic
condition or disability can influence or be
adjustments to their insulin regimen.
influenced by a course of medical
Taking responsibility for one's own care,
treatment such that many primary care
including preventive measures, is one of
physicians or others not thoroughly
the Council's guiding principles and is
familiar with the condition may not have
integral to cost-containment.
the specific expertise to prescribe safe
and effective treatment. The
Rehabilitation
consequences can be severe and life
threatening. People with chronic health
Rehabilitation has often been regarded
conditions and disabilities may require
as strictly related to recovery from
frequent consultations with specialists
trauma or acute conditions such as
and may even need the specialist to be
stroke or work-related injuries.
approved as a primary care physician,
Rehabilitation and habilitation also
allowing physicians trained in the
represent important concepts for
disability to act as "gate keepers" for
prevention of further loss or
other specialist referrals.
deterioration of health. Following a
stroke, an elderly woman in North
Prevention
Carolina recovered enough mobility to
allow her to live alone. When her
The concept of prevention is associated
physical therapy regimen was no longer
with health care services which detect or
considered "medically necessary" to her
prevent illnesses or injury. For people
physical restoration, it was discontinued.
with disabilities and chronic conditions it
This led to a subsequent loss of upper
can also mean preventing an injury or
body strength resulting in further loss of
illness from turning into permanent
ability and confidence to move around
functional loss, slowing functional
the building. In addition to her reduced
degeneration, and preventing the
function, she experiences the social side
development of secondary health
effect of isolation.
conditions. For many individuals with
For many people, rehabilitation is
disabilities and chronic conditions,
essential and should be considered part
routine health care can prevent greater
of long-term treatment. Medical
loss of function and additional health
rehabilitation representatives make the
care expenses associated with acute
point that their services are cost
remedies.
effective, increase function, and are
person-centered. Services can be
delivered in community facilities or in
23
home-based programs, and allow for
ability to participate fully in community
maximum flexibility - all qualities of
life.
care being sought in health care reform
Such equipment is essential, but the
strategies.
costs remain high and coverage is
greatly restricted under the current
Continued Medical Progress
health care purchasing options. The cost
of wheelchairs, for example, can range
People with diabetes, epilepsy,
into the thousands of dollars, especially if
depression, kidney disease, heart
motorized. When needed services are not
disease, and many other chronic
covered, people must pay for them out-
conditions rely on medications to
of-pocket. If unable to afford the
maintain their health. Prescription drugs
equipment, their health and independent
are not options for these people and
functioning may be at risk.
often mean the difference between life
and death. Prescription drugs are not
covered by Medicare, even though
Personal Assistance Services
Medicare recipients are most likely to
The costs of personal assistance services
rely on them. Furthermore, employers
are rarely covered by private or public
are increasingly dropping prescription
health benefits programs. Yet these
drug benefits in an effort to minimize
services, which include personal
cost.
attendants, interpreters, readers, and
The explosion of new knowledge and
home-health aides, can mean the
capabilities in biomedical research offers
difference for people with disabilities or
real hope of unraveling the medical
chronic conditions between
mysteries associated with chronic
institutionalization and living and caring
illnesses and disabilities. Effective
for oneself independently in the
diagnostic tools, treatment and cures are
community. Institutional care when
within reach for such debilitating
required to maintain health, carries high
conditions as cystic fibrosis and forms of
costs for families and providers. Personal
muscular dystrophy. Health reforms
assistance services and home-based care
should actively foster, not inhibit, such
can be delivered at a lower cost and with
research and development.
better social outcomes.
Durable Medical Equipment
Acting Together for
Durable medical equipment includes
Meaningful Reform
wheelchairs, hearing aids, speech boards,
The debate over health care reform has
prosthetic limbs, or other assistive
touched the life of every American. Not
devices that permit an individual to
surprisingly, a myriad of groups have
compensate for the loss or limit in
emerged to lobby Congress and the
function from a disability or chronic
administration to achieve their
health condition. Advances in the
respective agendas. People with chronic
technology provide consumers with
health conditions and disabilities are in
increased ability to select devices and
competition with these varied, often
services that most closely match their
well-financed interests for the attention
needs, maximizing their functioning and
of health policy decision-makers.
24
Key members of Congress have
Conclusion
indicated that they are not hearing a
great deal from the chronic health and
Striking similarities exist between
disability communities on health care
people with chronic health conditions and
reform. Months of participating in
disabilities and the general public
congressional hearings, White House
concerning the health system's problems
briefings, working groups, and face-to-
and potential solutions. The experiences
face meetings with legislators and their
of people with chronic conditions and
staff have not diffused the perception
disabilities can be viewed as a mirror on
that persons with chronic illnesses and
many of the weaknesses of the health
disabilities have yet to weigh-in strongly
care system. Meeting the needs of these
on health care reform. Policymakers
populations presents a stringent
across the political spectrum are
standard against which proposed
encouraging chronic illness and disability
solutions must be tested. If solutions
representatives to voice collectively
fail to meet the health care needs of
their shared concerns and
people with chronic health conditions and
recommendations.
disabilities, they ultimately will prove
Under the banner of REAL
deficient in meeting the health care
HEALTH CARE FOR ALL, disability
needs of the public generally.
advocate Justin Dart conducted a series
The unique expertise of this
of teleconferences in March to mobilize a
population is integral to ensuring that
national grassroots campaign for
health care reforms reflect the spirit and
comprehensive health care reform. The
intent of the Americans with Disabilities
campaign is applying the successful
Act. The chronic health and disability
approach employed to achieve enactment
communities must do all they can
of the Americans with Disabilities Act.
together to make it a reality.
Mr. Dart's call to action challenges every
member of the chronic illness and
disability communities to join together to
convince lawmakers that health care
reform cannot move forward without
specifically addressing the concerns of
these constituencies. The National
Health Council summit seeks to
communicate that call to the respective
communities SO that their collaborative
strength may be realized.
25
NATIONAL HEALTH COUNCIL MEMBERSHIP
VOLUNTARY HEALTH AGENCIES
Health Insurance Association of America
Alzheimer's Association, Inc.
Healthcare Forum
American Cancer Society
National Association for Biomedical Research
American Diabetes Association
National Association for Healthcare Quality
American Kidney Fund
National Association of Community Health Centers
American Liver Foundation
National Association of County Health Officials
American Paralysis Association
National Association of Health Data Organizations
American Red Cross
National Association of School Nurses
American Social Health Association
National Coalition of Hispanic Health
Amyotrophic Lateral Sclerosis Association
and Human Services Organizations
Arthritis Foundation
National Foundation for Brain Research
Asthma & Allergy Foundation of America
National Hospice Organization
Crohn's & Colitis Foundation of America
National Leadership Coalition on AIDS
Cystic Fibrosis Foundation
National League for Nursing
Epilepsy Foundation of America
National Organization for Rare Disorders
Guillain-Barré Syndrome Foundation International
Pharmaceutical Manufacturers Association
Huntington's Disease Society of America
Society for Neuroscience
Interstitial Cystitis Association
Juvenile Diabetes Foundation International
NONPROFIT ORGANIZATIONS WITH AN INTEREST IN HEALTH
Lupus Foundation of America
Academy for Educational Development, Inc.
March of Dimes Birth Defects Foundation
Alliance for Aging Research
Myasthenia Gravis Foundation
American Association of Retired Persons
National Alopecia Areata Foundation
AmHS Institute
National Down Syndrome Society
Combined Health Appeal of America
National Easter Seal Society
Goodwill Industries International
National Hemophilia Foundation
Grantmakers In Health
National Mental Health Association
Institute for Alternative Futures
National Multiple Sclerosis Society
Medic Alert Foundation International
National Neurofibromatosis Foundation
Mental Health Policy Resource Center
National Osteoporosis Foundation
National Center for Health Education
National Psoriasis Foundation
National Head Start Association
National Tuberous Sclerosis Association
National Rehabilitation Association
Paget's Disease Foundation
National Voluntary Health Agencies
Planned Parenthood Federation of America
Paralyzed Veterans of America
Prevent Blindness America
Save the Children Federation
RP Foundation Fighting Blindness
Society for the Advancement of Women's Health Research
SIDS Alliance
United Way of America
Sjögren's Syndrome Foundation
Spina Bifida Association of America
BUSINESS AND INDUSTRY
Tourette Syndrome Association, Inc.
Abt Associates
United Ostomy Association
AEtna Life & Casualty
Allergan, Inc.
PROFESSIONAL AND MEMBERSHIP ASSOCIATIONS
Amgen Inc.
American Academy of Physician Assistants
Burroughs Wellcome Company
American Association of Colleges of Osteopathic Medicine
Chiron Corporation
American Association of Diabetes Educators
CIGNA Companies
American Association of Homes and Services for the Aging
Ernst & Young
American College of Cardiology
Glaxo Inc.
American College Health Association
Hoffmann-La Roche Inc
American Dental Association
Johnson & Johnson
American Dietetic Association
Marion Merrell Dow Inc.
American Hospital Association
Merck & Company
American Medical Association
Metropolitan Life Insurance Company
American Optometric Association
Pfizer Inc
American Podiatric Medical Association
Sandoz Pharmaceuticals
American Public Health Association
Schering-Plough Corp.
American Society for Parenteral and Enteral Nutrition
Searle
American Society of Human Genetics
SmithKline Beecham Pharmaceuticals
Association for Health Services Research
Sterling Winthrop, Inc.
Association of Healthcare Internal Auditors
The Upjohn Company
Association of Reproductive Health Professionals
Warner-Lambert Company
Association of Schools of Allied Health Professions
Association of Schools of Public Health
FEDERAL GOVERNMENT
Association of State and Territorial Health Officials
U.S. Department of Defense-Office of Health Affairs
Association of University Programs in Health Administration
U.S. Department of Health and Human Services-
Biotechnology Industry Organization
Public Health Service
Eye Bank Association of America
Social Security Administration
Federated Ambulatory Surgery Association
U.S. Department of Veterans Affairs-
Group Health Association of America
Veterans Health Administration
Healthcare Financial Management Association
U.S. General Accounting Office
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