HARRISBURG, Pa. (ErieNewsNow) – Today, advocates and individuals living with intellectual disabilities and autism (ID/A) were at the state Capitol to raise funding concerns. They’re worried the 2023-24 state budget will fall short in addressing their needs.
Care providers and advocates say things are going from bad to worse, with necessary rate adjustments and even modest funding increases for ID/A services, now on the line just days before the budget deadline.
“We need the General Assembly and the governor to do the right thing. Do not forget us,” said Sherri Landis, Executive Director at the ARC of Pennsylvania. “These are the Commonwealth’s most vulnerable citizens, and they should not be forgotten,” she added.
Landis says anticipated funding gains for ID/A services have dropped in the draft budget passed by the House earlier this month, House Bill 611, which is expected to serve as the legislative vehicle for the 2023-24 fiscal budget.
“In House Bill 611, our budget was decreased by $170 million for the community living waiver line item. It is our lifeline,” said Landis.
Landis says the community living line item of the budget provides all the money for waiver services for individuals with intellectual and developmental disabilities. Without it, Landis says the system will continue to collapse.
“The dollars are directly linked to people not receiving services,” said Landis.
Advocates say restoring or increasing the $170 million is a critical step in alleviating the ongoing staffing crisis facing providers. In a Jun. 12 letter to leaders of the General Assembly, a coalition of ID/A advocacy organizations wrote:
“Due to rates that do not offer competitive wages for direct support professionals, 24% of positions remain unfilled and 37% of staff turn over each year, often citing wages as the primary reason why they leave.”
Providers say roughly 60,000 Pennsylvanians are at risk if they do not receive adequate funding because there are simply not enough direct support professionals (DSPs) to care for them. Currently, over 12,000 remain on the waiting list for services, including 5,400 with emergency needs. Many of those waiting have already been granted waivers, but still wait for care.
“It’s like getting the golden ticket. You are finally approved for the waiver, you’re coming off the waitlist, but now there’s no one to provide those services,” said Landis. “We have people in what we’re calling ‘a waitlist within a waitlist,’ people who are waiting for direct support professionals to provide those services or go into a community home. We can’t do that,” she added.
“We were the traveling freak show, we were uninvited, we were canceled, we were told we were not welcome in community activities and parties and at churches. And when we weren’t told in words, we understood the message- inclusion was not an option,” said Elizabeth Tolis, whose 14-year-old son, Emmett, is among those waiting for a person-centered family support waiver.
“In late March, after persistently advocating for years, we were notified that he would receive a person-centered family support waiver. We are at the beginning of that journey, and while I want to remain positive, my experience has prepared me to keep expectations low,” said Tolis. “We have been waiting over 90 days. We have no support in place. I’ve quit my full-time job. I’ve quit my lifetime career,” she added.
She says it’s hard for those unfamiliar to truly understand the day-to-day challenges.
“The caregiving role really depletes everything that we have to give to the rest of our family,” said Tolis. “This is a nonstop thing. It isolates not only him, it isolates us, it isolates my other children,” she added.
With two days until the budget deadline, Tolis hopes lawmakers will try to understand by restoring support in the final budget.
“These waitlists are not hurting the individuals that need to access the care. They’re breaking families apart. We need help,” said Tolis.
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