Chet Stofman has cerebral palsy, developmental delays, and a seizure disorder. But he feels at home, here in Western Pennsylvania. This is his community, and I am his primary source of care, love, and devotion. 

He is a shining star to all who know him and a joy to be around. His smile lights up the room. Chet is non-verbal. He cannot get out of bed, feed himself, or manage his medications by himself.

I know that Gov. Josh Shapiro has recommended that next year’s state budget includes more than $217 million in state funds, which would be matched with federal dollars. I also know that there are also $34 million in the proposed budget to help the 6,000-plus people on the emergency waiting list for services.

Frankly, it’s about time we saw this kind of support. Forty years ago, when Chet was born, we saw the need for this funding. People have struggled to be approved for the services because there simply were not enough funds out there. The wait list grew. Everyone suffered. We simply cannot get direct support professionals (DSPs) to help with our children’s care because the pay set by the state budget is too low.

I do trust our current leadership and their willingness to listen and respond, and I want to trust our legislators. That’s why I’m writing today. I’m hopeful they will listen and do the right thing by approving the budget. I would like to invite legislators and state and local officials to come spend the day or even a few hours with us. Come see the struggle we families live every day.

What legislators don’t really seem to understand is that my son cannot be left alone even for two minutes. Recently, he was lying on his back and started to choke. His DSP had gone into the other room for just a minute, and I was closer but physically unable to help Chet sit up. I was able to roll him onto his side until his DSP could help me. If I hadn’t been there, it could have been a life-or-death situation. 

This work is very stressful both physically and emotionally. It is imperative that I have DSPs who are highly skilled, qualified, compassionate, and available but there simply aren’t enough of those DSPs that will do this difficult work at the pay offered by providers. Pennsylvania simply doesn’t fund providers enough money to pay these caregivers/saints adequately.

I want our state legislators to know that I am just one of thousands of aging parents who are still caring for their children with disabilities. What will happen when I’m gone? Who will help my son have his best life? What is our state and federal safety net for my son, and the thousands of others like him? I’d like our state leaders and legislators to know that I’m thankful for the support so far but we need to do better. Funding this budget is a start.

That said, I am at the age where my friends are retiring and enjoying their remaining years. I want that option too, but I have to be here for my son. The worries we carry are enormous. I want him to live and be cared for the way he deserves. That’s all any parent wants. Legislators – please fully fund the Governor’s budget to expand ID/A services and eliminate the emergency waiting list.

Carol Tabas is a single parent of four grown children. She and Chet live in Allegheny County. Carol has served as Chair of United Way’s 21 and Able initiative. In 2017, she received the Shore-Whitehill Award – awarded annually by the Jewish Federation of Greater PGH and Jewish Residential Services to volunteers who promote the inclusion of people with disabilities in the fabric of Jewish life. She considers herself an “advocate for people.”