Disability and Health Care Reform: A Firsthand Perspective

Writing in the Huffington Post, Ari Ne'eman, head of the Autism Self-Advocacy Network, outlines a number of issues that need to be addressed to ensure that health care reform does not leave behind adults and children with disabilities. I always appreciate Ari's passion and insights. Following is a summary of his key points.

Long Term Services and Supports
To get Medicaid support for basic services they need to survive, many people must live in nursing homes and institutions. "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....Medicaid's long-term care policy 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...."

"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."

Health Care Disparities for People with Disabilities
"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....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."

Insurance Discrimination
While some states are addressing reform to mandate insurance coverage for autism and other disabilities, these efforts do nor represent comprehensive reform. Any health care reform must ensure insurance coverage for pre-existing conditions, including developmental disabilities.

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. 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....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."

Ari concludes: "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."

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