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Why are waits for disability services so long?

Plus, DIY testing drives patient-doctor wedge.

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This week: Shapiro pitches more money for intellectual disability services, a state House committee advances speech therapy bill, and men learn to provide care.

Gov. Josh Shapiro speaks with a person at a BARC Developmental Services event centered on his proposed investments in the 2024-25 budget to support Pennsylvanians with intellectual disabilities and autism.

Gov. Josh Shapiro speaks with a person at a BARC Developmental Services event centered on his proposed investments in the 2024-25 budget to support Pennsylvanians with intellectual disabilities and autism. (Commonwealth Media Services)

Waiting for Care


Tristan Rovito finally moved out of his mother’s house this month. The 25-year-old had wanted to leave since at least 2019, and his mother, Becky Bowling of Carlisle, had been trying to make that happen for a while.


But for Rovito, flying the nest was not as simple as finding an apartment and a couple of roommates. He has autism and low vision, which limit his social and communication skills, and his ability to care for himself.


Before the move, Bowling had been his caregiver around the clock, but the work was difficult and required her to quit her job. The situation was not sustainable, she told How We Care, which is why she needed her son to live on his own in a group home.


“I feel like my mom needs to have a lot of breaks from me,” said Rovito, who admits he was also itching for a change.


Both of them are thrilled that Rovito now lives in a group home, the entire cost of which is covered by a waiver from Pennsylvania’s Medicaid Home and Community-Based Services program.


A group home is a supervised residence for adults with autism and intellectual disabilities. It’s staffed by direct support professionals who assist Rovito and his two roommates with tasks like light housework, personal hygiene, and meal preparation.


“It’s going good,” said Rovito, who reports that his new roommates are nice and that he looks forward to spending more time with his girlfriend.

It took a long wait for him to get these services, a common experience in Pennsylvania.


Because the level of need exceeds what’s appropriated in the state budget, adults with autism and intellectual disabilities in the commonwealth spend months, if not years, waiting for waivers that pay for services, to which they’re entitled as Medicaid beneficiaries. April data from the Pennsylvania Department of Human Services show nearly 13,000 adults are on waitlists to receive these services. A 2022 report from DHS found that the median amount of time that people spend on all waiver waitlists is 2.6 years.


Once Rovito got the approval to be added to a waiver waitlist, it took nine months for a group home spot to open up. He describes these months of limbo as a “nightmare.”


“That period of time was really hard on both of us,” seconded Bowling. During the nine-month wait, she said they wondered “‘You know, is it going to happen?’”


Democratic Gov. Josh Shapiro’s budget proposal includes $78 million that would allow the Office of Developmental Programs to increase the number of waiver slots by 1,500 so that people like Rovito don’t need to wait so long for spots at group homes, as well as other services. The waiver program gives families access to a range of services, including various therapies, shift nursing, job counseling, respite for caregivers, and assistance with daily living tasks such as personal hygiene, transportation, and budgeting.


Legislative leaders, including Democrats who control the state House and Republicans who run the state Senate, are currently negotiating what the final budget deal will look like ahead of the June 30 deadline.


“The governor put a lot on the table with his budget proposal. While accommodating all his requests is not feasible, this is an area I certainly feel a need to address to the best of our ability,” said state Senate Majority Leader Joe Pittman (R., Indiana) in an emailed statement.

Read the full story here.

Sarah Boden, for Spotlight PA


Reader Resources

Must-Read

STUTTER STEPS: Legislation approved by the state House Insurance Committee “would offer speech therapy insurance coverage for those who stutter or have neurological trauma,” the Capital-Star reports. Full story →

Big Stories

‘GRAY ZONE’: “A new world of DIY testing is changing the relationship between physicians and patients,” the Washington Post reports. Full story (paywall)

FALL-PROOFING: “Falls are a growing public health concern as the country’s population sees record numbers of people turn 65 — now and in the future. But common as falls may be, they are not inevitable,” the AP reports. Full story →

The Upside

CARE CLASSES: “At Bogotá's Care School for Men, an innovative city-led program, men learn how to tend to their families and homes and to step up to do their share of housework and child care,” NPR reports. Full story →

PILOT PROGRAMS: At least half a dozen states have or are considering programs that subsidize child care for workers in that industry so they don’t drop out the workforce to care for their own children, Stateline reports. Full story →

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