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January 2011



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First Published Friday, 22 May 2009

Health Care in Congress

As we speak, Congress is deliberating on vast and important changes to the
system of health care in the United States. This issue is one of crucial
importance to all Americans, but of particular interest to those Americans
who interact with public health insurance more than almost any other group
— people with disabilities. Ranging from veterans with disabilities who
receive care through the Veteran’s Administration health care system to the
many low-income disabled adults who are eligible for Medicaid, the
disability community interacts with the public health care infrastructure in
the United States in a wide variety of ways. As we consider how to reform,
streamline and expand that infrastructure through any of a variety of means,
it is incumbent upon us to remember the key issues for making sure that
health care reform doesn’t leave disabled adults and youth behind.

*1. Long Term Services and Supports (LTSS):* Ever since the passage of the
Americans with Disabilities Act 19 years ago, the main priority of the
disability rights movement in the United States has been eliminating the
institutional bias in Medicaid. This bias imprisons Americans both young and
old in nursing homes and institutions in order to get the basic services
necessary to survive. This is both tragic and unnecessary. Individuals and
families are forced to choose between having to fend for themselves or
living out their lives in institutional care. Both research and the
experience of countless people with disabilities show that, with the right
support, people can live in the community rather than be relegated to
institutions. Community living settings, when properly implemented, improve
quality of life, reduce the risk of abuse, make it more likely that a person
with a disability will be able to work and are actually much less costly
than institutional care.

Right now, the main obstacle to LTSS reform is the bias in Medicaid long
term care policy which reimburses states for costly and segregated
institutional care but makes it extraordinary difficult to use the same
money to support adults in the community instead. A person who uses a
wheelchair or an adult with a developmental disability such as autism or
Down Syndrome can get the government to pay for a costly institutional
placement with low quality of life, but often must spend years on a waiting
list for far less expensive services, such as attendant care that could keep
them in their home or their family’s. The abuses that take place within
nursing homes and institutions are well documented and are truly shocking.
This situation benefits nobody but lobbyists for the nursing
home/institutions industry, which has been quite active in opposing reform
on this issue.

The Senate Finance Committee has recognized the need for some action on
LTSS, but so far has only recommended limited reforms like increasing the
federal Medicaid reimbursement for Home and Community Based Services by 1%.
The real answer can be found in the Community Choice Act, which would add a
benefit to Medicaid that would require states to allow people who meet an
institutional level of care to instead control their own supports while
choosing to live at home or with their families. President Obama won kudos
from the disability community by supporting the Community Choice Act during
his campaign, but since then the White House has signaled that this issue
will not be considered as part of health care reform. The Community Choice
Act should be properly considered a civil rights issue, as it means the
difference between segregation or integration for millions of disabled
citizens as well as many senior citizens for whom LTSS reform may be what
keeps them out of a nursing home and living a life of dignity. Health care
reform that fails to include this issue is health care reform that fails to
meet the needs of over 50 million Americans with disabilities.

*2. Health Care Disparities for People with Disabilities: * Both
Congressional leaders and the President have talked about the importance of
addressing health care disparities on the basis of race, income and
geography. But what about disability health care disparities? Too often,
medical problems faced by people with disabilities are assumed to be normal
and unavoidable as a result of being disabled. However, disability and ill
health should not be considered synonymous. People with disabilities face
significant barriers to access quality health care, due to both poverty and
accessibility problems. In addition, most physicians lack necessary
expertise on common co-existing medical issues that people with disabilities
of various kinds face.

For Autistic adults and children, who often have sensory hyper- and
hypo-sensitivities as well as trouble with social and/or verbal
communication, communicating medical problems can be exceedingly difficult.
For people with Down Syndrome and other developmental disabilities, a
doctor’s expertise on co-existing medical issues can mean the difference
between living full, meaningful and fulfilling lives or facing an early
death due to preventable secondary conditions. For Deaf people, getting
access to sign language interpreters in hospitals and doctor’s offices is
often exceptionally difficult. For many wheelchair users or people with
other mobility impairments, even getting in the door to the doctor’s office
can be a problem. If they can, they often face inaccessible examination
tables and other medical equipment that prevents them from getting the same
medical care available to any other person. One woman with a mobility
impairment was told by her physician that the scales they possessed were
inaccessible to people with her disability, but that she should consider
going to the post office and being weighed on the scale for large packages

Respectfully, people with disabilities are not postal mail. It is disturbing
to think of the number of preventable medical conditions caused by lack of
access to appropriate medical care. This is imposing a cost that can be
measured both in terms of quality of life and dollars spent later on
preventable secondary medical conditions. Congress must recognize people
with disabilities as an underserved population subject to health disparities
by undertaking both data collection and serious policy reform to ensure that
issues of access, expertise and coverage are address for the disability

*3. Insurance Discrimination: * According to the Executive Director of Access
Living, a Center for Independent Living in Chicago, and past Chair of the
National Council on Disability Marca Bristo, insurance discrimination has
been one of the single largest obstacles to full integration of people with
disabilities in society. States have tried to address this matter with a
patchwork of insurance mandate laws, virtually all of which have represented
disability and methodology- specific approaches that do not come close to
comprehensive reform. As Congress determines the structure of our updated
health care system, it is important that obstacles to access, such as
pre-existing conditions, as well as obstacles to coverage, such as the
refusal of many insurance companies to cover “habilitative” care for
children and adults with developmental disabilities, be considered and

4. Stop discrimination in the provision of care:* Too often, people with
disabilities are denied necessary — sometimes even life-saving — medical
care because of assumptions that non-disabled people make about our quality
of life. For many people, disability is still considered a fate worse than
death instead of a part of the human experience. As a result, it has been
disabled people who are pushed over the side first when resources become
scarce. As recently as last year, a task force including doctors from the
Centers for Disease Control and Prevention, the Department of Homeland
Security and the Department of Health and Human Services issued guidelines
stating that, in the event of a flu pandemic or similar emergency, people
with intellectual disabilities as well as those with chronic health
conditions may be excluded from care.

The eugenic impulse that views people with disabilities as “burdens on
society” or “life unworthy of life” is still regrettably alive and well
within our health care system. Just last week, Disability Rights Wisconsin,
the state’s protection and advocacy system for people with disabilities,
filed suit against the University of Wisconsin hospital as a result of their
decision to withhold medication and basic nourishment from two patients with
intellectual disabilities who had pneumonia. These individuals were not in a
persistent vegetative state, were not dying and one even asked for food. The
decision to refuse anti-biotics, nutrition and fluids for a treatable
medical condition was made by hospital officials based on their
determination of “quality of life” for the individuals in question. Health
care reform must include non-discrimination protections that prevent these
types of atrocities by health care providers.

These concerns are also relevant because of the likelihood that cost
containment measures will be included in the health care reform initiative.
Congress should avoid repeating the highly controversial Oregon Health Plan
of the early 1990s, whose priority list of services ranked medical
conditions in order to ration out care on the basis of a government
determination of severity. Americans, with or without disabilities, deserve
not to be pitted against each other in their efforts to obtain the health
care services they need. With limited resources, Congress will need to make
difficult decisions – yet discriminating against people with disabilities in
the provision of health care services should never be considered an
acceptable option.

One of the key critiques of the Disability Rights Movement has always been
that, for many of us, the problems we face are not inevitably associated
with whatever condition or diagnosis we may possess but are as much the
result of societal discrimination in the form of infrastructures that were
built without consideration that people like us might one day use them.
Nowhere is this issue clearer than in health care. A health care reform
agenda that includes these concerns can drastically improve the lives of
many millions of Americans. One that simply reinforces the status quo will
represent yet another wasted opportunity. It is no longer acceptable to doom
a considerable portion of the American populace to more discrimination, more
segregation and more disparities in access to meaningful health care.
Disability has often been called the great equalizer — our community
reaches throughout every racial, religious, gender and political
classification. Furthermore, though we are wide and varied, including both
people with acquired disabilities, such as many of our brave men and women
in uniform coming home from overseas, and others who were born with their
disabilities, such as myself and the rest of the Autistic community, we can
unite around our common dream for full participation, inclusion, integration
and equality of opportunity for all. The disability message is a civil
rights message. It is time for Congress and the President to hear our
voices: Nothing About Us, Without Us!

Source:   http://www.huffingtonpost.com/ari-neeman/health-care-reform-and-th_b_206492.html

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