2013 Disability Policy Seminar

The New American Movement for People with Disabilities attended the Disability Policy Seminar in Washington, D.C. on April 15-17th. This year’s seminar was attended by over 600 advocates, professionals and government employees from across the country, including U.S. territories such as Puerto Rico and American Samoa, and drew attention to the significance of health care reform and fiscal austerity measures. For the disability community, the 113th Congress has the capacity to drastically alter their standard of living and services provided if action is not taken against proposed budget cuts. The 2013 Disability Policy Seminar was a tall glass of political reality as it relates to health care and fiscal reform.

“I thought it was great – informative and educational,” self-advocate Dante Chrystal reflected.” I learned about budget cuts, I learned about people with disabilities and how they want to cut [our] SSI benefits. Learning about this made me feel upset because you can cut so many other things, SSI recipients still live below the poverty line, I couldn’t imagine that they would cut even more from their checks.”

The Seminar opened Monday morning with a plenary as to the current state of politics in Washington, D.C. with an emphasis on the fiscal agenda of the conservative party, stating “Conservative values justified by their own fiscal facts.” There is a movement amongst conservatives to “gut” social security in the United States, and to privatize health care at the expense of the sickest and most vulnerable population. However, the plenary speaker asserted that this conservative “push” to cut entitlement program spending is ideologically regulated, and not fiscally backed.

Since the 2012 election, the 113th Congress has not spared a single benefits program in their overly-ambitious hope of cutting the federal budget and drastically reducing the deficit. The word “entitlement” has become negative in conservative rhetoric and for the first time all entitlement program recipients are plagued with future insecurity. Coupled by poor cooperative efforts between the legislative and executive branches, the Disability Policy Seminar emphasized the importance of personal testimony and legislative visibility in ensuring that people with disabilities are protected from the stormy Washington climate.

Over the course of three days, the Disability Policy Seminar stressed the biggest changes for the disability community emerging from Washington, D.C: The Affordable Care Act (ACA), the ABLE Act, and SSI & SSDI. Though each session was comprehensive in breaking down unclear aspects of each policy – all of our specific policy questions were answered – the Disability Policy Seminar failed to answer one underlying concern: how our government is going to protect people with disabilities?

How an individual becomes eligible for SSI and SSDI, why the ABLE Act is under contention in Congress, and how the ACA will affect small businesses were all addressed in each concurrent session. Even the contentions of individual states were addressed in the adoption of these new policies, such as the reluctance of 26 states to accept the federal Medicaid dollars in adoption of the ACA and the autonomy of each state to define their “essential health benefits.”

That being said, the most profound sessions were the plenary sessions, where disability professionals and advocates from across the country collaborated in a single room to address the most daunting questions of disability policy. For the first plenary session, the future of disability policy was discussed. The three hurdles for the disability community addressed were the classification of I\DD in the DSM5, the current trends in Washington, D.C., and employment and education.

First, the disability community addressed the lack of common language between legislators, researchers and people in the disability community. The speaker highlighted reluctance of the DSM5 and doctors to use the word “disability” instead of “intellectual or developmental disorder”, reflecting the academic and social divide in the field. There is a strong need for collaboration amongst advocacy groups and the disability community to come up with common language that is universal across each sector of the disability field.

Second – as mentioned in the introduction – there are three trends in Washington that are threatening this country: the lack of bipartisanship, the lack of a great cause, and deficit reduction. The speaker urged the room to coalesce and share their personal stories with their representatives in Washington.

Lastly, the plenary speakers addressed the biggest challenge in education and employment: how can we use outcome definitions and their value to improve the lives of people with disabilities? The speaker addressed many ways in which success is measured in education, however, professionals are recognizing that without accurate outcome measures, the data becomes isolated in its region and even research sector. The future of disability policy as it relates to employment and education demands a restructuring of successful outcome measures in the face of increasing fiscal scrutiny.

Furthermore, in regards to the future of disability policy and supports provided for the disability community, the biggest threat has become the transition to Managed Care. Although not delved into deeply, the transition to managed care across the nation is a dire issue for the disability community. Managed care is viewed by many politicians as a cost saving and state relieving solution; however, the reality touched on by Ari Ne’man is that the managed care model has few cost savings for individuals who require long term care. Equally, managed care makes the health care provided to people with disabilities vulnerable to the budgets of state legislature. The I/DD community should demand a public comment process before passing each managed care waiver and have an active change agent represented at every level of discussion.

The idea of an “active change agent” was truly the overarching theme of the Disability Policy Seminar. As professionals, advocates, family members and supporters, the conference reminded us that it is our responsibility to be the voice and the change we need to see in government. Relying solely on the lobbying of certain politicians or the advocacy of a few is not enough to create the society in which people with disabilities can live equal and fulfilled lives. The New American Movement for People with Disabilities urges our supporters to be this active change in your local community and state – regardless of your knowledge of the ACA, Medicaid, or your feelings on deficit reduction. The disability community relies on the every voice.

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