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Featured Image: Matt and Cindy
Submitted by Cindy Jennings, whose first-born son Matthew has “chromosome partial 9Qtrisomy – an extra chromosome 9.” When Matt was born, Cindy was told he would be unable to walk or talk, but he can now walk and he communicates using a special device. They live in Lititz (Lancaster County).
For decades, PA has had a waiting list for services for thousands of people like my 28-year-old son, Matthew. He has multiple disabilities, and because we cannot get help from a Direct Support Professional (DSP), I am now his full-time DSP. I don’t get vacation pay or sick leave, and I don’t have a 40 hour work week. My job is all day, all night, all year. And I don’t make anywhere near the salary I could make with my degree. Luckily, I don’t have a house payment and or a car payment right now, or I couldn’t do this. I don’t know how other DSPs do it!
When COVID hit, Matthew’s day program closed. The DSP that had been coming to our home stopped coming, so we could remain healthy and safe. Now they don’t come because there just are not enough DSPs. So now I’ve now been home with Matthew full-time for two years. And unless the PA General Assembly fully supports what providers need to be able to actually attract workers, I don’t see an end to this.
I want every reader to know – especially Gov. Wolf and PA’s legislators – that PA has ALLOWED a waiting list.
We are letting the most vulnerable citizens in the Commonwealth live without what they need. Matt and people like him meet all the criteria to get services, and the government has said we qualify and can get them. BUT the state doesn’t fund the programs enough to hire an adequate workforce, so we all sit on the waiting list. This is not our fault. The answers are in the hands of our state legislators and governor. Let’s prioritize human needs.
Whenever I write my legislators, I ask “How can you say that you represent all Pennsylvanians when you know there’s a waiting list and you know that you’re not providing sufficient funding for people like my Matt?”
Frankly, I’ve come to realize that I probably won’t die of cancer or some disease. I’ll die of a broken heart. I’m tired of people not seeing that my son has value. He’s a person. I love him. And when you have systems in place to help that also treat him like a second class citizen it’s exhausting and heartbreaking.
What happens when I’m not around anymore? What does Matthew’s life look like? I don’t know, and it’s terrifying to even think about. I try to provide him opportunities based on what he likes to do, what he’s interested in. I don’t know who else will do that with him. He likes covered bridges and tunnels. Who’s going to explore those with him? I can’t think past today, so I don’t know how to answer that question.
Only a trained DSP, or a mom, is going to have the eight hours it takes to take Matt to a dentist appointment, or to care enough about Matt as an individual to do the things he enjoys doing when he enjoys doing them. He’s just like you and me. He wants to live his life on his own terms in his own home and community. Doesn’t he deserve that? Shouldn’t we make sure he and the thousands of others waiting for a DSP get that?
So please, if you are reading this, tell Governor Wolf and your legislators to fund the $65 million that providers have asked for so they can be able to recruit and hire DSPs to support and help people like my Matthew and thousands of other families. Please tell them to help all these PA families.
Information provided to TVL by:
Gary H. Blumenthal
Vice President, Governmental Relations and Advocacy
InVision Human Services
Innovative Approach. Shared Vision.
www.invisionhs.org
