Gov. Josh Shapiro speaks with someone at a BARC Developmental Services event about investments he proposed in the 2024-25 budget to support Pennsylvanians with intellectual disabilities and autism. Commonwealth Media Services
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Tristan Lovito finally moved out of his mother’s house this month. The 25-year-old has been wanting to leave since at least 2019, and his mother, Becky Bowling, of Carlisle, has been trying to make it happen for some time.
But for Rovito, leaving the nest wasn’t as simple as finding an apartment and a roommate: He has autism and low vision, which limit his ability to socialize, communicate and take care of himself.
Before the move, Bowling was caring for her son around the clock, but the demands of her job forced her to quit. This situation was not sustainable, Bowling told How We Care, which is why she needed to put her son on his own in a group home.
“My mom feels like she needs to spend a lot of time away from me,” Rovito said, acknowledging that she too was looking forward to a change.
They are both happy that Lovito now lives in a group home, the costs of which are covered entirely by a waiver from the Pennsylvania Medicaid Home and Community-Based Services Program.
The group home is a supervised residence for adults with autism and intellectual disabilities and is staffed with direct support specialists who help Lovito and her two roommates with tasks such as light housekeeping, personal hygiene and food preparation.
“It’s going well,” said Rovito, who added that his new roommates are nice and he’s looking forward to spending more time with his girlfriend.
He had to wait long periods to receive these services, which is common in Pennsylvania.
With the level of need exceeding the amount allocated in the state budget, adults with autism and intellectual disabilities in the state have been waiting months, and in some cases years, for payment waivers for services to which they are entitled as Medicaid recipients. About 13,000 adults are on a waiting list to receive these services, according to April data from the Pennsylvania Department of Human Services. A 2022 DHS report found that the median length of time people have been on all waiver waiting lists is 2.6 years.
After Rovito was approved to be added to the exemption waiting list, it took nine months for a spot in a group home to become available, a period of limbo he describes as a “nightmare.”
“That period was really hard for both of us,” Bowling agreed. During the nine-month wait, they “thought, ‘Is this really happening?'” she said.
Democratic Gov. Josh Shapiro’s budget proposal includes $78 million to allow the Department of Developmental Programs to increase waiver slots by 1,500, so people like Lobito don’t have to wait so long for group homes and other services. The waiver program allows families to receive a variety of services, including a range of therapies, shift nursing, vocational counseling, respite for caregivers and help with daily living tasks like personal hygiene, transportation and budgeting.
Legislative leaders, including Democrats who control the state House of Representatives and Republicans who control the state Senate, are currently negotiating what a final budget proposal will look like ahead of the June 30 deadline.
“The Governor proposed many things in his proposed budget, and while it would be impractical to meet all of his requests, this is an area we feel we need to address to the best of our ability,” State Senate Majority Leader Joe Pittman (R-Ind.) said in an emailed statement.
Shelley Landis, executive director of the Arc of Pennsylvania, an organization that advocates for Pennsylvanians with intellectual and developmental disabilities and their families, called Shapiro’s proposal “historic.”
“I’ve never seen a governor really take on a waiting list on the scale that Gov. Shapiro has,” she said.
But even those with exemptions have struggled to access services offered by community-based nonprofits and businesses. Recruiting and retaining employees has long been an issue for direct support professionals, service providers say. [DSP] The industry is known for having extremely low starting salaries.
So Shapiro is asking lawmakers to allocate another $483 million in state and federal funds, or a 12% fee increase, to direct service providers, in addition to the $78 million to expand the exemption. Direct service providers can use the money for pay increases, retention bonuses, hiring and other staffing-related costs. The last time direct service agencies received a fee increase was in January 2022.
“Access to services is not possible without supporting the providers and DSPs who deliver them, and investments in this fee will support DSPs across the sector,” a DHS spokesperson said in an email to Spotlight PA.
Shapiro’s proposed tax infusion would not require health care providers to pay the raises, but the Department of Homeland Security said previous rate hikes have increased employee pay.
Landis said he is confident wages will go up if Shapiro’s budget is approved and that it would be “incomprehensible” if it wasn’t. Landis said many service providers have told him they are struggling to stay open because they can’t retain employees.
“They have to compete with sheets, the service industry and warehouses,” she said.
Steven Sloviec, president and CEO of Achieva, a Pittsburgh-based exempt service provider that is affiliated with The Arc of Pennsylvania, told Spotlight PA in an email that direct support professionals cite low pay as the reason they are leaving the nonprofit, which has a minimum wage of $15.76 an hour.
“While we have not directly reduced the employment services we provide, staffing shortages often result in significant delays between when a person is approved for services and when we are able to provide them,” Suloviec said. “This delay is unfortunate and highlights the ongoing challenge of finding staff.”
Bowling worries about what will happen to her son’s quality of life as she ages — it’s unlikely Lobito will stay in the group home forever, and other issues that require Medicaid funding are sure to arise — and at 65, she knows one day she won’t be able to advocate for her son.
Or, in Rovito’s words, “She’s too old for this.”
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