WATCH: What Pennsylvanians with ID/A, Caregivers, and Advocates Are Saying About Governor Shapiro’s Proposed Budget Investments for ID/A Services

“I am hopeful for Pennsylvania’s future when I see people in positions of power taking action that is effective now. This will be a game changer. Thank you, Governor Shapiro, thank you.”

Harrisburg, PA – Since Governor Josh Shapiro proposed critical investments in the 2024-25 budget that will expand services for Pennsylvanians with intellectual disabilities and autism (ID/A), Pennsylvanians with ID/A, caregivers, and advocates have praised the Governor’s plan to increase access and support for home and community-based services, address the shortage of direct support professionals in the Commonwealth, and set a course to end Pennsylvania’s emergency waiting list for ID/A services. 

Governor Shapiro proposed $483 million in federal and state funding to provide more resources for home and community-based service providers, so they in turn can pay competitive rates to attract and retain the staff who provide these essential services. The proposal includes a $78 million investment in federal and state funds to serve an additional 1,500 Pennsylvanians with ID/A currently on the waitlist in the next fiscal year, reducing barriers to care for thousands of Pennsylvanians over the next several years.  

This week, Governor Shapiro and Secretary Arkoosh hosted a roundtable discussion at BARC Developmental Services in Bucks County to hear directly from Pennsylvanians affected by ID/A, caregivers, advocates, and family members. In March, Secretary Arkoosh also visited Penn-Mar Human Services to discuss the importance of the Shapiro Administration’s investment in direct support workers and the ID/A community.   

This week, the Shapiro Administration released new videos highlighting stories from the ID/A community – and what these proposed investments would mean to them. Watch and read those stories below. 

Colleen, Bucks County – click here to watch.

“I wanted to come because of, not just my son having difficulties getting the services and trying to plan for his future, but for all the people that I’m connected with. There just seems to be a lot of people in the same position as me where they can’t plan and they can’t get the appropriate services now, so they can’t even imagine what will happen to their children when they are gone. My son Shaun is 34 years old. He’s a comedian. He uses a communication device, but he’s very alert of everything. He works part time at a law firm. He has a support staff to go with him. He volunteers at the library … We can’t find people. The agencies can’t find people. And so we end up doing all of this care. But we are getting older and older. So that’s what worries me is like, if we are not around, and we want him to live independently, how is anyone else is going to? If we can’t do it, and we have a really huge vested interest. We want him to have the life and make his own decisions and has – has the support staff … Right now, I’m hopeful for Pennsylvania’s future, because we are having these meetings and we’re having the discussions … We have somebody that’s listening to people, we have some actions and things put in the budget. So there’s positive movement.” 

Lynn and Ryan, Philadelphia – click here to watch.

“Ryan has a rare kind of epilepsy that’s intractable. He has CP (cerebral palsy) and communicates nontraditionally. But, on the other side, he’s a happy guy. Loves being around people, loves being in the community. This, not quite young man is very important, and his happiness is at the center of our lives. This proposal to raise salaries and recognize the work the direct support professionals do is decades overdue. The young lady who works with Ryan has been with him for 23 years. The last time she saw a raise was before the pandemic. She does not get benefits, no retirement. Do you know how important she is in our family? She’s kept our family together. I don’t know what we would do if she walked out because replacement is not possible. The fact that the Secretary and the Governor are working together makes me encouraged for the first time. “ 

Jill, Montgomery County – click here to watch.

“My son has a number of diagnoses — cerebral palsy, intellectual disability, cortical visual impairment, and a host of other related conditions. But, unfortunately, on the waiting list, with the needs he has, which are 24/7, all ADLs. My husband and I have been doing it for all these years, and we’re getting too old to do many things, such as taking him out of the house. And so he’s been incredibly isolated, and we’ve watched his, him really deteriorate in many different ways. It has been real painful. So we now have hope. We can give him an opportunity, and he will have an opportunity to live a good life and including when we are no longer here. Without these services you can’t — a family like ours cannot even plan for the future … I am hopeful for Pennsylvania’s future when I see people in positions of power taking action that is effective now. This will be a game changer. Thank you, Governor Shapiro, thank you.” 

Rebecca and Kyle, Covington, PA  click here to watch.

“Our son has a rare genetic disorder called 48XXYY. Males should have an X and a Y chromosome, and he has a double X and a double Y. We didn’t actually get the diagnosis until he was 7.” 

“It has been a struggle [to get services in the Commonwealth]. We’re in a very rural area where there’s not much there anyway. But even before we were introduced to the Human Services system because of his disabilities, … it was a struggle to get services.” 

“For me, not having such long waits until our son was in crisis, to then finally be able to get the waiver, and then have to wait so long again. He then wanted to be more independent of us and needing another waiver and years of waiting, he has another mental health crisis breakdown and is considering taking his life. Both times, it had to be crises to get what we needed, and it breaks our hear that he had to get to that point. And had he been able to get the services he needed when he needed them, we wouldn’t have gotten to that point.” 

“Certainly anything the state of Pennsylvania can do to get the funding to a point where the system is no longer reactive, where the system can function in a proactive manner versus reacting when there’s an emergency and now you don’t have time on your side for any planning.”  

“If our story can help so that somebody else doesn’t have a child try and do what Cade did twice because services were available, or the funding was available then something positive will have come out of the struggles he had to go through.” 

For more information about the Governor’s proposed 2024-25 budget and the bold investments to support Pennsylvania’s ID/A community, programs, support staff, and more, click here.


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