By Melissa Shusterman
Countless Pennsylvanians living with autism or an intellectual disability and their families have their lives put on hold as they remain on a waitlist, in some instances for years, to receive critical support that helps them lead productive and healthy lives.
Pennsylvania’s medical assistance program includes home and community-based services (HCBS) waivers, which provide disabled Pennsylvanians with necessary support and care. This includes accessible housing and employment opportunities, granting people the opportunity to live more independently.
Those with intellectual disabilities and autism or a physical disability may utilize this waiver system to receive care that Medicaid will cover and avoid institutionalization. While this mission aims to increase the inclusivity and quality of life for people with intellectual disabilities or autism, funding from the state Legislature continues to dwindle.
As funding diminishes, the HCBS waivers waitlist grows. As of March 2020, nearly 13,000 people were on Pennsylvania’s list awaiting these services. More than 5,000 list members were in the “emergency” category, meaning they need services immediately– or by no later than six months.
Meanwhile, the nearly 3,000 people in the “planning needs” category will need assistance within five years.
It is unacceptable to leave a vulnerable community waiting indefinitely on services they need to survive.
This is why my Democratic colleagues and I are fighting for our Pennsylvania Rescue Plan, which includes an intellectual disabilities waiting list initiative. If enacted, our plan could accommodate over 1,000 people on the individuals with intellectual disabilities and autism emergency waitlist.
This funding from the American Rescue Plan would benefit people and organizations right here in southeastern Pennsylvania that help people living with ID or autism reach their full potential.
Valley Forge Educational Services is one of them. They have been committed to helping Chester County residents living with intellectual disabilities develop life and social skills, maintain relationships and reach their employment goals. For over 60 years, they’ve helped more than 10,000 children and adults with disabilities lead healthy, productive lives. Funding from the Pennsylvania Rescue Plan could help keep their mission alive.
Grace Fornicola, Valley Forge Educational Services’ executive director, recently said that “without access to this waiver funding, individuals with intellectual disabilities are not developing self-sustaining independent skills nor receiving critical services that ensure their health and safety, confidence, community belonging and overall sense of self-worth. All of the adults we serve through our program, Customized Workforce Solutions, rely on waiver funding for employment supports and related services.”
While the rescue plan is a step in the right direction, it only serves a fraction of vulnerable Pennsylvanians in need.
I support my colleague, Rep. Liz Hanbidge’s, D-Montgomery, bill, which would end the HCBS waiver waitlist and expediate the process. Her House Bill 682 proposes that Pennsylvanians who are eligible for the HCBS waiver program receive their HCBS waiver benefits no later than 90 days after they become eligible for Medicaid.
Together, through fair funding and effective legislation, we can correct this injustice and get people the care they deserve.
For years, openings for these life-sustaining services and housing have remained stagnant. It’s time we reform this ineffective system and prioritize the needs of vulnerable Pennsylvanians. One of our jobs as legislators is to protect our most vulnerable citizens, and this is one of the many ways we can do that.
State Rep. Melissa Shusterman, a Democrat, represents the 157th House District, which includes parts of Chester and Montgomery counties. She writes from Harrisburg.
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