Why health care reform is crucial for people with disabilities

From an op-ed by Ari Ne'eman, founding president of the Autistic Self-Advocacy Network (ASAN), in The Huffington Post. In the picture, Assembly Budget Chairman Louis Greenwald of New Jersey (D-Camden), left, and Ne'eman.

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 instead!

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 community.

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 addressed.

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!