HARRISBURG, Pa. (February 6, 2024) – The intellectual disabilities and autism (ID/A) community today breathed sighs of relief after Pennsylvania Gov. Josh Shapiro called for a “systemic fix” to the critical care and support network during his annual budget address. The pledge from Shapiro came after a decade-plus of diminishing state investments and support that left individuals and families without care and support and pushed many providers to the brink of insolvency.
The proposed 2024-25 executive budget calls for a more than $480 million investment into funding programs that support individuals with an ID/A. This represents a proposed 12% increase in reimbursement rates paid to ID/A programs that employ direct support professionals (DSPs). The proposed $480+ million includes $217 million in state funding and $266 million in federal funding. The proposal follows the governor’s September directive to the Department of Human Services Office of Development Programs to evaluate and assess rates paid to ID/A programs that employ DSPs.
“This is a fight we can all get behind – ensuring individuals with ID/A have access to the right services at the right time, while providing better care for our families and neighbors, and making Pennsylvania more competitive,” the governor said during his budget address. “This process is critical to ensure that providers are paid appropriate reimbursement rates so that they can set wages that support and retain qualified, dedicated staff who help Pennsylvanians with intellectual disabilities and autism live safe, vibrant lives in their community among their family and peers.”
The proposed budget includes the following investments:
- $34.2 million in Community Waiver and $1.85 million in the Community Base Program, which will allow DHS to expand the number of individuals participating in home and community-based service programs
- $2.1 million in the Autism Intervention Program and $1.1 million in the Community Base program
- $266 million in total federal funding and $217 million in state funding to increase resources for providers of home and community-based services
- $934,000 to add American Sign Language and English interpreter services to programs serving those with ID/A to ensure equality in communication services
“Access to services is not possible without supporting the providers and direct support professionals who provide peace of mind to countless families and caregivers,” the governor said during his address.
Providers and advocates are hopeful that these proposals will help to address the long list of Pennsylvanians with an ID/A and their families that in need of services and resources. The ever-growing waiting list is due, in part, to a lack of DSPs, programs, and services. As of Nov. 30, 2023, there were 13,247 total people waiting for services and support, with 6,000 Pennsylvanians at risk and in need of immediate services, according to ODP data.
Joining lawmakers at the budget address was Cindy Jennings, a Lancaster County mother with an adult son, Matthew, who has an ID/A. The Jennings were mentioned during Shapiro’s address.
“So instead, Cindy, a 60-year-old single mom who’s battled her own health challenges that have limited her ability to care for Matthew, is forced to provide care herself – along with Matthew’s grandma, Judy,” Shapiro said. “Listen, you’ve all heard from people like Cindy, Judy, and Matthew. They’ve walked these halls. They’ve rolled their wheelchairs into your offices year after year to ask you to step up and help. And yet nothing has changed. The biggest reason why people can’t access care is because there aren’t enough caregivers. And the reason why there aren’t enough caregivers is because they aren’t getting paid enough.”
Providers and organizations centered around assisting individuals with an ID/A and their families praised the announcement from Shapiro.
Sherri Landis, Executive Director of The Arc of Pennsylvania: “When Governor Shapiro was on the campaign trail, he promised to change how state government works for the people. I am thrilled he is keeping his word as it relates to the intellectual and developmental disabilities (I/DD) and I/DA communities. Governor Shapiro’s investment in the I/DD system will help individuals receive the services they desperately need.”
Richard Edley, PhD, President and CEO for the Rehabilitation & Community Providers Association (RCPA): “Governor Shapiro is really living up to his mandate to ‘get stuff done’! The disability community has waited decades for a governor that would make systemic fixes a key budget issue, and the day has finally come. This is an important step, and when implemented will immediately assist providers in helping the many individuals and families in need.”
Mark Davis, President and CEO for Pennsylvania Advocacy and Resources for Autism and Intellectual Disability (PAR): “On behalf of the individuals with ID/A and their families our members serve, I want to thank Governor Shapiro for his commitment to address the chronic underfunding this system has endured and to help address the workforce crisis that has led to service reductions and the elimination of programs that these individuals need to thrive and remain at home or in their communities. The fact that the Governor wants to help us eliminate the waiting list is especially gratifying. This waiting list is intolerable. We look forward to working with the Governor’s team and lawmakers in the coming months to make sure that these proposals are included in the final budget.”
Patrick DeMico, Executive Director of The Provider Alliance: “We are grateful for the Governor’s leadership and decisive action. Far too many providers across the state have been forced to cut programs and services due to a lack of funding. We have seen an exodus of DSPs from the field as they couldn’t make a living wage. All of this forced families to make hard decisions in order to care for their loved ones. Finally, these dark days seem to be coming to an end.”
Cherie Brummans, Executive Director of The Alliance of Community Service Providers: “Governor Shapiro’s budget address was welcome, necessary news for the entire disability community. Individuals, families, providers, and professionals all have waited over a decade for a governor to say, ‘Enough is enough.’ While the supplemental funding is appreciated, we are hopeful that the governor and General Assembly will continue to work together to address other system issues so that we may make it better than ever.”
Diane Conway, CEO of MAX Association: “For far too long, families across Pennsylvania have had to choose between a career and caring for their loved ones with an I/DD or I/DA.
Governor Shapiro’s budget address made it clear that help is finally on the way for individuals, families, and providers.”
About The Arc of Pennsylvania: The Arc of Pennsylvania is the state’s leading advocacy organization promoting the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes. More at https://thearcpa.org.
About the Rehabilitation and Community Providers Association (RCPA): With close to 400 members, the majority of whom serve over one million Pennsylvanians annually, Rehabilitation and Community Providers Association (RCPA) is among the largest and most diverse state health and human services trade associations in the nation. RCPA provider members offer mental health, substance use disorder, intellectual and developmental disabilities, children’s, brain injury, criminal and juvenile justice, medical and pediatric rehabilitation, and physical disabilities and aging services, across all settings and levels of care. Visit www.paproviders.org for more information.
About Pennsylvania Advocacy and Resources for Autism and Intellectual Disability (PAR): PAR proudly represents provider organizations whose mission is to serve and support Pennsylvania's children and adults with autism or intellectual disability. With a workforce of over 50,000 Pennsylvanians supporting tens of thousands of individuals and their families, the association promotes the highest standards of service through advocacy, information, training and education, and the resources provided by our members. Visit https://par.net for more information.
About The Provider Alliance: TPA supports agencies that serve people with intellectual disability and autism across Pennsylvania. We do this through collaboration, advocacy, innovation and information-sharing across its membership. TPA promotes best practices and workforce development to help members deliver safe, supportive, and compassionate services that are part of the fabric of local communities. More at https://provideralliance.org.
About The Alliance of Community Service Providers: The Alliance of Community Service Providers is a non-profit association of organizations who provide service to children and adults with mental health conditions, substance use disorders, and/or intellectual disabilities. The Alliance works to improve the quality and sustainability of services, provide a voice for our agencies and the people they serve at the city and state levels, and create a venue for collaboration, problem solving, and information sharing. Find out more at https://thealliancecsp.org.
About MAX Association: MAX seeks to be the leading association of human service providers in the counties of Bucks, Chester, Delaware and Montgomery by supporting them to secure the necessary resources to fulfill their individual missions. We strive to create a cooperative organization among the community service providers for people with behavioral health disorders, developmental disabilities, and drug and alcohol involvement and their families in order to promote continuing quality improvement of supportsand needs-based allocation of resources.Learn more at https://maxassociation.org.