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Pittsburgh: "Abyss of adult service system for people with intellectual disabilities/autism"

June 5, 2023, Pittsburgh Post Gazette: Anne Couldridge: Our son with autism fell into the social service abyss. We need help.

There are no words to describe the heartache and emotional roller coaster that happens when you first learn your child is diagnosed as having intellectual disabilities and/or autism.

You experience sleepless nights, invest hours into research and therapies, have guilt over not focusing enough on your neuro-typical children, and feel isolated and alone, even if you have a strong family and friend support system.

The worry and sleepless nights never truly go away. You experience the trauma of stigma — stared at in public, teased, difficulty making friends. You focus on helping your child grow and gain independence, communication, and job skills. Then graduation arrives and leaves you and your child with an uncertain future.

School becomes your main system for services and support. My son graduated from high school in 2021. Like many special education students, he then fell into the abyss of the adult service system for people with ID/A, a system that has been historically underfunded and understaffed.

For many decades, people like me have fought for the same opportunities for our children that other sons and daughters have. In my opinion, it’s a value statement that this year’s proposed state budget doesn’t even scratch the surface of what people in the ID/A community need. That means our trauma continues as we realize our family — my son — is simply not a priority.

Society already stigmatizes my family. Bureaucracy and politics marginalize us even further by allowing us to flounder without adequate support.

Our son is nonverbal, has autism and intellectual disability, and has a seizure disorder. He requires 24/7 assistance. We receive only three days of professional support per week and sit on a waitlist for more support. Because of this, my husband left the workforce to care for our son. Sadly, many families like ours face this decision. …
Who will support our son? Who will provide routine, stability, social and medical oversight, and behavioral supports? Who will be here to allow him to live in his home and community when we no longer can? Who will protect his freedoms?
We need Direct Support Professionals (DSPs). Today, DSPs make low wages on par with unskilled laborers. I don’t understand that. It’s complicated, mentally, and physically demanding work.
We need DSPs who are paid appropriately for the work they do so there will be enough DSPs to support people like my son. He deserves the quality of life that only his family and skilled DSPs can provide. To accomplish this, our state government needs to prioritize funding so the people who need the most support can access it.

Wouldn’t it be great if PA decided to lead the way for the rest of the Country by investing in these services? Let’s pay the skilled workforce of DSPs what they are worth and recognize the important, life-altering service and work they do.

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