Featured Image: Matt and Cindy<\/p>\n
Submitted by Cindy Jennings, whose first-born son Matthew has \u201cchromosome partial 9Qtrisomy \u2013 an extra chromosome 9.\u201d 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). <\/em>\u00a0<\/em><\/p>\n 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.<\/strong> I don\u2019t get vacation pay or sick leave, and I don\u2019t have a 40 hour work week. My job is all day, all night, all year. And I don\u2019t make anywhere near the salary I could make with my degree. Luckily, I don\u2019t have a house payment and or a car payment right now, or I couldn\u2019t do this. I don\u2019t know how other DSPs do it!<\/p>\n When COVID hit, Matthew\u2019s day program closed.<\/strong> The DSP that had been coming to our home stopped coming, so we could remain healthy and safe. Now they don\u2019t come because there just are not enough DSPs. So now I\u2019ve 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\u2019t see an end to this.<\/p>\n I want every reader to know \u2013 especially Gov. Wolf and PA\u2019s legislators \u2013 that PA has ALLOWED a waiting list.<\/p>\n We are letting the most vulnerable citizens in the Commonwealth live without what they need.<\/strong> 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\u2019t 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\u2019s prioritize human needs.<\/p>\n Whenever I write my legislators, I ask \u201cHow can you say that you represent all Pennsylvanians when you know there\u2019s a waiting list and you know that you\u2019re not providing sufficient funding for people like my Matt?\u201d<\/p>\n Frankly, I\u2019ve come to realize that I probably won\u2019t die of cancer or some disease. I\u2019ll die of a broken heart. I\u2019m tired of people not seeing that my son has value. He\u2019s a person. I love him. And when you have systems in place to help that also treat him like a second class citizen it\u2019s exhausting and heartbreaking.<\/strong><\/p>\n What happens when I\u2019m not around anymore? What does Matthew\u2019s life look like? I don\u2019t know, and it\u2019s terrifying to even think about. I try to provide him opportunities based on what he likes to do, what he\u2019s interested in. I don\u2019t know who else will do that with him. He likes covered bridges and tunnels. Who\u2019s going to explore those with him? I can\u2019t think past today, so I don\u2019t know how to answer that question.<\/p>\n 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\u2019s just like you and me. He wants to live his life on his own terms in his own home and community. Doesn\u2019t he deserve that? Shouldn\u2019t we make sure he and the thousands of others waiting for a DSP get that?<\/p>\n 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.\u00a0Please tell them to help all these PA families.<\/p>\n Information provided to TVL by: <\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" Featured Image: Matt and Cindy Submitted by Cindy Jennings, whose first-born son Matthew has \u201cchromosome partial 9Qtrisomy \u2013 an extra chromosome 9.\u201d When Matt was born, Cindy was told he … Continue reading A mom\u2019s request to PA Legislators and Gov. Wolf: Please do the right thing for my son.<\/span>
\nGary H. Blumenthal
\nVice President, Governmental Relations and Advocacy
\nInVision Human Services
\nInnovative Approach. Shared Vision.
\nwww.invisionhs.org<\/p>\n
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