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The gathering storm in disability services | Opinion

Patriot-News - 12/30/2019

There is a gathering storm in disability policy and services that has been largely ignored or overshadowed by the current impeachment frenzy and the fast approaching presidential primary season. Candidates opine about inclusion, diversity and maximizing individual freedom, but they have largely failed to address the impending crisis in services for individual citizens who live with a disability, now estimated by the Centers for Disease Control at nearly 25 percent (61,000,000) of the national population.

This includes adults and children, veterans wounded in combat, and others who live with a “severe” or chronic condition that limits their life choices. What is at risk in the current political climate is one of the great but unheralded freedom struggles of the past half-century, a movement that promised liberation from abuse-ridden institutions, community-based living, and the rights to education and social services. In short, equal protection under the law.

The recent PBS/Politico Democratic Debate brought home to viewers and policymakers the candidates’ inability to address this matter in concrete and substantive terms. Only one question dealt with the issue of services to individuals with disabilities and none of the presidential contenders offered a response that demonstrated a breadth of knowledge or engagement with the topic. There was no follow-up line of inquiry.

There are at least three trends that need to be addressed if the legal and social framework of disability policy is to be protected. First is the growing chorus of professionals who champion a return to institutionalization for individuals with mental health and intellectual and developmental disabilities.

Secondly, the chronic shortfall in funding for behavioral and therapeutic services, which includes long waiting lists for residential placement in community-based living arrangements. Lastly, and perhaps the most ominous of all, the draconian cuts in federal funding for vocational, employment, rehabilitative and other disability services proposed by the Trump Administration for the next fiscal year.

Collectively these trends reflect a callous disregard for the everyday experiences of children and adults with disabilities, and their hopes for a more stable and secure future.

Ironically, as lawmakers in Pennsylvania and other states move to close publicly funded institutions and substitute community living arrangements, there are those who insist on a return to large-scale facilities like Pennhurst. The ongoing public disagreements over closing Polk Center, Norristown and Allentown State Hospitals, and other sites in Pennsylvania, shows just how contentious the issue of deinstitutionalization remains.

From Los Angeles to Philadelphia, ethicists have championed the return to large-scale public institutions as a more efficient and effective means of delivering services to those with severe mental health conditions and intellectual disabilities. With no real appreciation for history, or the horrors that routinely occurred--medical experimentation, sexual sterilization, commonplace physical and psychological violence--these advocates incorrectly predict institutional confinement will save taxpayers money in the near and long run. As one noted financial analyst wrote recently, this is simply “bad economic policy.”

Perhaps the most ominous cloud on the horizon is the proposed massive funding cuts for programs that support individuals with disabilities in the home, workplace, school and society. In the spring of 2019, the Trump Administration put forward a federal budget that slashed a combined $84 billion from disability-related programs. Social Security Disability Insurance, Medicaid, traumatic brain injury, family caregiver services, assistive and adaptive technology, residential living supports, employment and vocational education are all on the chopping block. (A strong public outcry compelled the administration to maintain funding for Special Olympics.)

In an April New York Times opinion piece, former Gov.Tom Ridge, now chairman of the National Organization on Disability, called these cuts to critical programs “not only unjust but also fiscally foolish.” Ridge publicly endorsed Senators Robert Casey and Sherrod Brown’s call for the complete restoration of all cuts proposed to disability programs. A protracted political battle over spending priorities has already ensued.

Over more than half a century of advocacy and litigation, the disability rights movement has been successful in changing people’s attitudes and government policies that affect individuals with disabilities. While sounding a note of alarm, we affirm the inherent right of each citizen regardless of race, status, or ability to equal protection under the law. It is not too much to ask that ethicists, scientists, and politicians embrace the principle of “do no harm” in public policy that affects the everyday lives of tens of millions of our fellow citizens.

Dennis B. Downey, PhD is professor of history emeritus at Millersville University, and James W. Conroy, PhD is CEO of the Center for Outcome Analysis. They are members of the Board of Directors, Pennhurst Memorial and Preservation Alliance, and the co-authors of Pennhurst and the Struggle for Disability Rights (forthcoming 2020 Penn State Press).

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