Pa. regulators offer $40 million in incentives to boost autism and intellectual disability services

Mar. 20—With thousands of Pennsylvania families still struggling to recover services for their loved ones with autism and intellectual disabilities, state regulators are launching a $40 million bonus program intended to encourage agencies to return to pre-pandemic enrollment levels by June.

Providers of these services, who are skeptical of the plan, are allowed to use the supplemental payments however they like.

"This represents a significant investment in trying to support these providers to do whatever it takes to bring people back," said Kristin Ahrens, a deputy secretary in the state Department of Human Services.

Nearly 14,000 residents enrolled in certain autism and intellectual disabilities programs received fewer services than they did before the pandemic during the state's fiscal year that ended last June, according to DHS. Services such as aides, employment assistance, and certain kinds of therapy for people with autism and intellectual disabilities are paid through Medicaid, a joint state and federal health care program for low-income families, which the human services department regulates.

There's been improvement since then, said Ahrens, who runs the Office of Developmental Programs. "We're back up to about 75%," she said, referring to the percent of individuals who have recovered the services they lost during the pandemic.

The industry has trouble attracting staff because average pay was only $16.63 last year, according to an industry survey.

One family's travails

Elisabeth Lush-Saadoun has been trying for three years to secure services for her daughter, Maya, who turns 24 this month. Maya aged out of Pennsylvania's school-based services for individuals with intellectual disabilities and autism just before the COVID-19 pandemic started.

"We're supposedly on waiting lists for all these different programs," said Lush-Saadoun, who was not impressed when told about the supplemental payments providers.

Some agencies are not adding people to wait-lists because the backlog is so large. "It's always a staffing issue," Lush-Saadoun said.

The only activities Maya has had since her school eligibility ended March 2020 are things Medicaid doesn't pay for — like group music therapy and an activities program in Horsham that has since closed.

Lush-Saadoun would like to have more choices for her daughter, who has genetic disorder that causes autism, epilepsy, and other medical problems. Medicaid gives an unlimited budget for services, but "there are so many restrictions on how you can use the money that it doesn't meet the needs of a lot of people who have it," Lush-Saadoun said.

An organization responsible for coordinating Maya's services suggested that the young woman should live in a community group home. "It felt like they just wanted to warehouse her," Lush-Saadoun said.

They visited a group home. "It was a cute little house in a safe neighborhood, but it was dark and it was dreary, and it felt very isolated," she said. "We kept saying: what would she do all day at this house?"

Supplements panned by advocates and industry

The $40 million supplemental payment program supports aids during community activities like volunteering or visiting parks, help with employment, and service coordination. That money is in addition to a $354 million, or 87%, increase for those services in the current fiscal year, which ends June 30.

Not all advocates are fans of the supplemental payments for agencies who get back to pre-COVID service levels.

"Why don't you penalize them when they don't?" said Audrey "Dee" Coccia, cofounder of Vision for Equality, a Philadelphia nonprofit that advocates for individuals with intellectual disabilities and their families.

Agencies are not altogether pleased by the $40 million plan, according to Mark Davis, president and CEO of Pennsylvania Advocacy and Resources for Autism and Intellectual Disability, an industry organization.

It was a backwards design, he said. "It was giving more money to providers who were full, and less money to providers who had vacancies, who were struggling with hiring staff," Davis said. "It seems to have an underlying assumption that providers needed an incentive to serve people. That's our mission. That's what we do."

Agencies suggested that $40 million could be shifted toward the rates given that Gov. Josh Shapiro's budget proposal this month provided no rate increase.

"We're going to be dying on the vine here," Davis said.

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