How Pa. strips people living with autism and intellectual disabilities of personal choice | Opinion

SEPTEMBER 2, 2020 6:30 AM

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 By Gloria Martino Satriale

Gov. Tom Wolf recently announced plans to invest a portion of the state’s COVID-19 relief funds under the federal CARES Act to supply emergency funding to providers of services to people with disabilities who sustained catastrophic losses and increased expenses because of the pandemic.

Although many publicly applauded the investment, a large number of families and caregivers consider the act as nothing more than smoke and mirrors designed to deflect attention from the destructive policies that the Pennsylvania Office of Developmental Programs (ODP) and state Department of Human Services (DHS) have put in place during the governor’s tenure.

Through the ODP, regulations have been put in place to limit the number of program participants with autism and intellectual disabilities who can be served in any type of setting — including newly opened residential homes or supported apartments, vocational, and recreational services — to no more than three.

Translated into real-life examples, this means that no more than three participants with autism or intellectual disabilities may be in a restaurant, office, gym, or even the actual building housing the program at any one time.

If three autistic adults from Program X are enjoying a meal in a restaurant and another individual — either from the same group or a different program — would like to eat there, that individual would have to leave and either go somewhere else, or wait in another location until the first group left

Even more ridiculous, if an adult with intellectual disabilities wanted to celebrate his or her birthday at his or her day program with more than two peers, the program would need a waiver to do so.

Of course these regulations have been established with the best intentions, in an attempt to prevent the horrific, institutionalized care that used to be the standard. But no one is suggesting that we bring back horrific institutions such as the long-shuttered Pennhurst State School and Hospital, in Chester County, which housed thousands of residents.

But it makes absolutely no sense that the new definition of institution is anything larger than three people.  It’s completely arbitrary.

Not only is this absurd on the face of it, but these strict size restrictions don’t promote community in any sense of the word — homes are often geographically isolated, for example, far from the community-based activities that residents enjoy.

Those in more densely populated neighborhoods, far from being welcomed, often meet resentment and active protest from their neighbors.

Most critically, from my perspective both as a parent of a 30-year-old son severely affected with autism and intellectual disabilities and as the director of a program that serves severely autistic adolescents and adults, these policies completely ignore individuals who have challenging behaviors and/or health restrictions that preclude safe community access.

What right does ODP have to say that adults with autism or intellectual disabilities are better off in small groups walking around a mall or sitting in a coffee shop than working at a hydroponic greenhouse or a therapeutic farm with 10 other peers, or attending a beloved day program with their friends?

Why aren’t they afforded the right to choose what they do and where they live, a right enjoyed by every other American?

The Center for Medicaid and Medicare Services (CMS) spent many years collecting input from numerous stakeholders nationwide about these issues.  As a result, in January 2019, the agency issued new guidance prioritizing individual outcomes over the physical characteristics of settings.

This shift acknowledges that no “one-size-fits-all” model of residential and vocational services can ever fit a population with such a broad range of impairments and preferences.

In other words, the size and location of settings do not drive quality — the quality of services, supports, and choices do. Yet Pennsylvania’s regulations don’t reflect this change. The Office of Developmental Programs continues to insist providers meet the previously issued guidance based on physical characteristics of settings.

It’s time for ODP to follow the lead of CMS and other states, including New Jersey, which have adopted much more flexible and innovative regulations, recognizing that intellectually and developmentally disabled adults — just like the rest of the population — don’t all want and need the same things.

It’s time for common sense to guide our disability policies and to restore choice to the individuals we serve.

Dr. Gloria Martino Satriale is the executive director of Preparing Adolescents and Adults for Life (PAAL), a specialty secondary-educational program for adolescents with moderate to severe autism between the ages of 14 and 21. She is the immediate past president of Mission for Educating Children with Autism (MECA). She writes from Chester County.