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Families to Pa. leaders: We need direct support now

Our son, David, had several diagnoses that led to a general conclusion of autism spectrum disorder, and he is considered medium functioning.

We completed the hospital’s required 25-page form to obtain services for him. It has now been 27 years, and we still haven’t heard back from anyone at that hospital.

Within days of submitting that paperwork, we said to each other, “We’re not waiting. We have to do something.” At the time, one of Susie’s colleagues saw her crying, put us in touch with a pediatric psychiatrist and our journey began. We will always be on that journey.

Our adult daughter is married and lives in another town, and David has another very engaged family member in a different state who is a source of daily support and communication for him. But in our home, without exaggeration, every moment and action in our lives is adapted for David’s benefit.

His behavior can change dramatically if his cell phone is misplaced, if plans are changed unexpectedly, if we talk on our phones and he cannot understand to the minutest detail what we are talking about, if we talk about anything other than things he understands or are pertinent to him, if he smells food cooking that he doesn’t like. These are things a “typical” person doesn’t think twice about, but David responds with escalating anxiety and unpredictable behavior. We automatically do and say whatever is needed to keep him calm; we are conditioned to do so.

We have a Direct Support Professional (DSP) who works with David for a few hours each week. But we and thousands of other Pennsylvania families need full-time support to help us cope with the difficulties of caring for our loved ones. In the past, people like our son ended up in state institutions, but we knew David would have a better life if he had help from a local service provider so we could live together as a family. Thousands of families like ours across Pennsylvania struggle every day just to survive.

We are told we can pay for a DSP out of our own pockets, but the overwhelming 60,000-plus families with a loved one with an intellectual disability cannot afford to hire DSPs without state assistance. And service providers find it virtually impossible to recruit or hire DSPs today due to the state’s low DSP wages used in the rates for ID/A programs.

The wages being funded by the state prohibit many who are qualified from being interested because they know they cannot make a living wage. DSPs are not babysitters. They are trained professionals, and there aren’t enough of them. Period.

David is our son. He is an accomplished visual artist, and he participates in formal rites in our place of worship. We love him and want him to have a life that is fulfilling, just like we have and like anyone who reads this has. Every aspect of our lives — meals, bedtimes, friendships, work, and family lives — revolves around what keeps David safe, healthy, and happy.

But we’re aging.

We have a centenarian parent who requires substantial care. We have siblings dealing with significant medical issues. We try to be involved in our place of worship because that’s very important to us all, we have a home, and we both work full-time.

All the love and care we provide now will not be available to David when we are gone. We know that when something happens to us, things for David will fall apart. The bubble we have created for him, the daily routine that helps him thrive, the support he has, his very world will fall apart. It simply isn’t sustainable without our presence.

He needs capable professionals to facilitate independent living, allowing him to prepare his own meals, go to work, and have a meaningful social life. He needs qualified, trained DSPs.

Having such professionals is now largely dependent on the funding that service providers are requesting of the state. We read an article recently in the Pittsburgh papers that asked the question “If not now, when?”

That’s our question.

When will David and thousands of others like him be treated like the human beings they are? Now is the time, for David and all Pennsylvanians who deserve to be supported fully.

(Submitted by the Cohens. Pseudonyms were used at the request of the family.)

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