Harrisburg, PA – This week, Governor Josh Shapiro and Department of Human Services (DHS) Secretary Dr. Val Arkoosh met with Pennsylvanians with intellectual disabilities and autism (ID/A), caregivers, and advocates all across the Commonwealth to hear how the proposed investments in his 2024-25 budget would address the needs of Pennsylvanians with ID/A by expanding access to support home and community-based services and addressing the shortage of direct support professionals.
The Governor’s proposed $483 million in federal and state funding would 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 of federal and state funds to serve an additional 1,500 Pennsylvanians with ID/A currently on the waitlist in the next fiscal year.
On Wednesday, Governor Shapiro and Secretary Arkoosh visited BARC Development Services in Warminster to meet directly with caregivers, supported individuals, caregivers, and providers. The Governor and Secretary had a heartfelt conversation about why these investments are so important – and are needed now.
On Thursday, Governor Shapiro spoke at Representative Dan Miller’s 11th Annual Disability & Mental Health Summit in Pittsburgh, and Friday, he spoke at the School District of Philadelphia’s 14th Annual Autism Expo where he was given the Legislative Champion for Autism Advocacy award. Also on Friday, Secretary Arkoosh visited The Arc of Lehigh and Northampton Counties to talk with caregivers, self-advocates, and professionals in the intellectual disability and autism (ID/A) community.
Read and watch what Pennsylvanians with ID/A, caregivers, and advocates are saying about the Governor’s plan to expand ID/A services and support more Pennsylvanians and direct support professionals:
Department of Human Services (DHS) Secretary Dr. Val Arkoosh: “Achieving an everyday life with dignity is a goal for so many of our neighbors, friends, and loved ones in ID/A communities, but when they have to wait for services, we are falling short in helping them meet this goal. Every Pennsylvanian with intellectual disabilities and autism should receive the supports they need when they need them. Under Governor Shapiro’s budget proposal, Pennsylvania will become a leader in the home and community-based services space by working to eliminate the waiting list for services, investing in the value and importance of ID/A service providers and direct support professionals, and, most importantly, demonstrating our commitment to Everyday Lives for all Pennsylvanians.”
Gregory T. Miller, President and CEO of Penn-Mar Human Services: “I am confident our elected officials understand the importance and value of the services that organizations like Penn-Mar provide. Many of our local representatives have visited and witnessed the courageous living of those we support and the amazing work of our team members. I am also well aware of the challenges our representatives face in responding to all of their constituents’ requests for support. This year I am especially grateful to see significant investments proposed for home and community-based services, which would make an enormous difference in the ability of providers like Penn-Mar to support more people with disabilities and their loved ones. By properly valuing the critically important work of direct support professionals, this funding will have a transformational impact on the lives of Pennsylvanians with intellectual and developmental disabilities and ensure that they are able to live lives of their choosing.”
Mary Sautter, Executive Director of BARC Development Services: “We applaud Governor Shapiro’s proposed investment in ID/A services in Pennsylvania for increased rates, supplemental payments, and more capacity to address the waiting list. The foundation of BARC Developmental Services are the direct support professionals (DSPs) who work tirelessly every day to provide the care needed so our supported individuals can lead happy, fulfilled lives and contribute to their communities. The Governor’s proposed budget includes critical investments into the ID/A system that will help increase wages for DSPs so agencies like BARC Developmental Services can recruit and retain qualified staff. We are hopeful that the state legislature will maintain this funding in the 2024-25 budget.”
Tom Carasiti, Community Advisor, Vision for Equality/PA Waiting List Campaign: “For far too long in Pennsylvania, thousands of adults with intellectual disabilities or autism have waited for years on long waiting lists to receive home and community-based services for which they are eligible. Historically, funding made little impact on the overall waiting list numbers. Governor Shapiro and DHS have taken an unprecedented stance in their 2024-25 budget proposal to end this practice in Pennsylvania. Vision for Equality considers this a historic and monumental plan not seen in the 25-year history of long waiting lists for the ID/A community. We support the Governor’s budget proposal, and we strongly encourage the General Assembly to do the same. This long-term vision and the work to support higher rates for providers and wages for direct support professionals will end waiting lists for those in need, and it’s time for us to move forward.”
Gary Blumenthal, Vice President of InVision Human Services: “Governor Josh Shapiro and Department of Human Services Secretary Dr. Val Arkoosh have made the needs of the ID/A community a top FY 24-25 Budget Priority. The ID/A budget proposal is more than just an appropriation—it’s a beacon of hope for individuals with ID/A and their families across Pennsylvania.”
Jennings Family: “Matthew was probably the most wanted baby ever. I was so excited when I learned I was expecting him. It was definitely a surprise that the doctor told me he was born with a chromosome abnormality and they suspected he would have intellectual disabilities and physical disabilities. I heard all that, and I thought: ‘I just want him to know what it is to be happy.’ There are two main things I talked to the Governor about: my frustrations of trying to find staff. I know I need to transfer Matt’s care to other people because I’m not going to live forever. When I don’t have support staff. My mom, Judy, is my backup and she’s 86. It’s not a viable plan of care at all. I have spoken to my representatives and senators and was told that we have to have a balanced budget every year. But you’re balancing the budget on my back, and I really think we can do better. I felt that Governor Shapiro really listened to me. He asked great questions. I know he wants to improve the pay rates for support staff. At the end of the budget address, I felt heard. I finally felt heard. He gave the issue names, faces, a location – but now it’s up to the Legislature to do the right thing. I’m hopeful for Pennsylvania’s future because Governor Shapiro listens.”
Colleen, Bucks County: “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: “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: “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: “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.”
See what Pennsylvanians are reading about Governor Josh Shapiro’s proposal for ID/A services.
Bucks County Herald: In Warminster, Shapiro rallies support for his budget’s ID/A funding
PennLive: Legislators who oppose Gov. Shapiro’s budget need to see the people it’s designed to help
Pittsburgh-Post Gazette: Editorial: Legislators must keep Shapiro’s disability care funding intact
The Keystone: Opinion: After years of advocating, families of disabled feel hopeful
WGAL: Lititz family mentioned in governor speech highlights the caregiver shortages
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