My son is now 18 years old and a senior in high school. We are struggling with what happens after high school—work preparation and self-sufficiency. One of the greatest impediments to our planning is that health insurance coverage is dependent on either full-time employment by a large employer or his being deemed by the government as “permanently and totally disabled.” For millions of young persons with special needs, they are neither. Cindy Smith, CHADD’s public policy specialist, attended a conference on this topic. Below is her summary.
This week I attended the Asset Development Summit for Persons with Disabilities and Their Families and launch of the Real Economic Incentive Tour for 2009. These events were sponsored by the National Disability Institute and other partners in Washington, DC. The development of personal assets is a topic I thought about frequently as I transitioned from school to work and back to school, and like many students made the decision to borrow the necessary funds to pay for my education. My experience has been remarkably similar and yet incredibly different from my peers with disabilities.
No one ever encouraged me to apply for public benefits, no one ever discouraged me from working. It was always assumed, barring some unforeseen circumstance, that I would finish school, find full-time employment, pay back my student loans, and begin slowly to save for my eventual retirement, and accumulate the funds needed to pay for my other life goals such as owning a house, taking a vacation, paying the living expenses of my children. Why is this not the same story for youth and adults with disabilities? Why is it that working-aged adults with disabilities are three times more likely than their working aged adults without disabilities to live at or below the poverty line?
The all-too-familiar story I have heard while answering the phones at legal services organizations was echoed at the Summit: the story of not going to work because of the fear of losing cash benefits, health insurance, and possible discrimination because of disability.
One of the Summit’s overarching goals was to increase awareness of a paradigm shift that is beginning—the shift from the belief that people with disabilities must live in poverty to the belief that people with disabilities can and should be able not only to lead economically self-sufficient lives by being able to work, but also to develop assets. Mechanisms are developing to allow this shift to occur—for example, the use of tax credits such as the Earned Income Tax Credit, the development of financial literacy programs such as America Saves, and the creation of waiver programs by Medicaid.
Tobey Davies, who directs the Center for Community Economic Development and Disability at Southern New Hampshire University, presented case studies that documented the ability of people with disabilities to use a combination of resources in order to meet their goals of buying a home or taking a vacation. The silos of progress have a long way to go before they are fully realized and our society becomes one in which people with disabilities can lead economically self-sufficient lives within their communities. Currently, over half of taxpayers with disabilities in the United States have incomes at or below $20,000 and an additional 27 percent have incomes under $40,000. Progress is slow but is starting to occur. Resources are available to assist people with disabilities in developing, retaining, and growing their assets. More information on this topic can be found here.
Cynthia A. Smith, MS, CAS, JD, is CHADD’s public policy specialist.
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