A mom of children with intellectual disabilities asks: When will it be our turn? | Opinion

People with intellectual disabilities and autism — and their families — desperately need help now

Direct service providers rally for more money in the 2022-23 state budget at the Pennsylvania state Capitol on May 24, 2022 in Harrisburg, Pa. (Photo by Amanda Berg, for the Capital-Star).

Direct service providers rally for more money in the 2022-23 state budget at the Pennsylvania state Capitol on Tuesday, May 24, 2022. (Photo by Amanda Berg for the Capital-Star).

 By Nancy Murray

I am the mother of three adults with intellectual disabilities. Personally, and professionally, I have advocated for people in the ID/A community for more than 40 years. I want decision-makers in Harrisburg to know that my family and many others have been desperately pleading for help for far too long.

Families have become the safety net for the very system that was created to support them. The crisis in the ID/A community is getting worse every day, and we desperately need all of our legislators to make this a funding priority.

Families, people with ID/A, Direct Support Professionals (DSPs), and provider organizations are united in making formal requests for funding. Today, though, I am a mom reaching out to say ‘Help us. These are our sons and daughters. They are Pennsylvanians and some of our most vulnerable neighbors. They are all of us.’

Families have become the safety net for the very system that was created to support them.

Increased funding will allow service providers to hire and retain skilled Direct Support Professionals to care for people living in community homes and people living with their families. Today, due to the low wages, DSPs are looking for jobs in other types of businesses and, frankly, where the work requires much less responsibility, training, and effort.

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Direct Support Professionals are highly trained. They support people with ID/A who have complex medical, behavioral, and/or physical issues. Today, their wage structure puts DSPs at the poverty level. That results in high vacancy and turnover rates, which leaves people with ID/A without the care they desperately need. It also leaves families without the respite we need for our own mental and physical health.

Pennsylvania voters want their tax dollars to be spent on the most compelling and genuinely needed programs. They want their tax dollars to be spent on services for families in need, and there are many such families. But for decades, those of us with family members with ID/A who provide 24/7/365 care have been grossly underfunded, and now we are in crisis mode. I see this from the firsthand family perspective AND as an advocate in the ID/A community.

There is no clearer need in the Commonwealth than the health and safety of people with ID/A who have an acute need for care because of the DSP shortage and the increasing waiting list for services.

This is not a party-line issue. Republicans and Democrats all have a responsibility to come together and address the ID/A crisis. I implore every member of the PA legislature to make our family and the thousands of families like ours a priority.

We have waited long enough.

Nancy Murray, M.S., is President of The Arc of Greater Pittsburgh and Senior Vice President of Achieva. She also serves as chair of The Provider Alliance’s Government Affairs Committee. 

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Capital-Star Guest Contributor
Capital-Star Guest Contributor

The Pennsylvania Capital-Star welcomes opinion pieces from writers who share our goal of widening the conversation on how politics and public policy affects the day-to-day lives of people across the commonwealth.