PHILADELPHIA -- When state officials approved Devon Geiger for the most comprehensive benefits Pennsylvania offers for adults with autism and intellectual disabilities, her mother, Deb Geiger, had peace of mind. She thought her daughter would get the services she needed.
But when Geiger started looking for programs, she found that options that seemed like good fits for Devon were full and not even adding people to wait lists. Geiger works in marketing for a software firm and now has to spend more time in the office, which means she can’t be home with Devon.
“It’s grim,” Geiger said recently, lamenting that Devon, 22, doesn’t even bother changing out of her pajamas any more. “She’s sinking in.”
Geiger and her daughter, who live in Horsham, are among the growing number of families who were approved for Pennsylvania’s most generous intellectual disability benefits under Medicaid but remain without services as agencies struggle to restart services that had to be shut down early in the pandemic.
Worker shortages plaguing many industries and low government rates are big factors, but not the whole story, experts said.
State regulators also are ratcheting up the pressure on agencies to serve their clients in the community in groups of no more than three, experts said. This is part of a decades-long effort to shed all traces of inhumane forms of congregate care, but it also means short-staffed agencies can serve fewer individuals.
“We have a lot of families sitting at home really struggling,” said Audrey “Dee” Coccia, cofounder of Vision for Equality, a Philadelphia nonprofit that advocates for individuals with intellectual disabilities and their families.
The Inquirer interviewed a half-dozen families about their struggles finding services for their adult children. What follows are snapshots of three of those families. The state’s highest level of benefits, called a consolidated waiver, effectively has no limit and often runs into the hundreds of thousands of dollars a year in services.
Like many parents, Geiger wants Devon to keep living at home, not in a group home, but she also wants Devon to have “purpose and pride in something she is doing.”
Sometimes Geiger brings home boxes she needs for her marketing job and pays Devon to put them together with the help of a caregiver Geiger found on Care.com and pays for out of pocket. “Just trying to get her to have some structure. Otherwise she’s in her room on these devices all day,” losing herself in a fantasy world, Geiger said.
“The more isolated she gets from people, the more she can’t coexist with them,” Geiger said. “We’ll go to a store, and she’ll say, ‘Mom, there’s people here.’ I’m like, yes. She didn’t used to be like that. I do worry as every day goes by that I’m seeing behavior issues increase.”
In Port Richmond, Dalton Hinckley, 22, has gone 19 months without services, his parents, Sherry Gannon and Kenneth Hinckley, said last month.
“Nobody wants to have to deal with him because he does have behavioral issues. He can be a little tough to deal with at times,” said Kenneth Hinckley, who sometimes has to sit on Dalton, who is 6-foot-2 and weighs 230 pounds, to restrain him.
“It is scary. It’s petrifying to go through that,” Kenneth Hinckley said. “I’m 65 years old now, and I’m about 250. I’m waiting for a heart attack.”
An agency that is supposed to help coordinate services for Dalton suggested that Dalton be institutionalized, but Dalton’s parents don’t want that. They want help.
“We ain’t as young chickens as we once were,” Kenneth Hinckley said. “We could use some help,”
Before the pandemic, Barbara Zimmerman’s 27-year-old daughter Erin was doing well. She had support staff Monday through Friday from 9 a.m. to 2 p.m. and worked at Buffalo Wild Wings for an hour on Thursdays and Fridays, but the pandemic blew up that routine, Zimmerman said.
“Now we’re going through people left and right. That’s really hard for Erin,” Zimmerman said. As she hangs out at home in Downingtown, Erin’s anxiety increases with each new person and each day with no support staff, her mother said.
“She colors and plays on her computer. More OCD things set in,” such as yelling out movie scenes, Zimmerman said. An example is "The Wizard of Oz" when the witch is melting, Zimmerman said: “Not just the dialogue, but the music, and the background noises, all at once.”
If Erin gets out of the house, has experiences, and sees new things, she has less anxiety, Zimmerman said. “We know how to fix it; we just don’t have the support staff to do it.”
Regulators and agencies blame the workforce crisis.
Worker shortages are creating barriers to people with intellectual disabilities and autism getting the help they need, according to the human services department and agencies.
To help agencies rebuild staff and increase pay, the state’s Office of Developmental Programs provided a total of $145 million of federal COVID relief funds to 600 agencies statewide.
Kathleen McHale, president and chief executive of SPIN, a large nonprofit human services agency in Philadelphia, said her agency put every penny of its relief funding in the benefits and wages boosting the lowest starting hourly wage to $16.05 from $13.75.
McHale’s agency lost more than 200 workers last year — more than 20% of the total. That has made it hard for SPIN to rebuild its day programs where participants socialize and engage in educational and recreational activities.
Before the pandemic, SPIN served 194 individuals in day programs, many full-time. Now that figure is 101, all part-time, McHale said. Based on hours of service, the agency is at 40% of its pre-pandemic level, she said this month..
Worker shortages are not the only problem, McHale said. The rates paid by the state don’t match the costs. Agencies receive slightly more for serving clients in the community compared to in a facility.
But the current $2.08 per hour extra for community-based care ($23.40 an hour compared to $21.32 and hour, based on one worker for two or three clients) “is not enough to support all the added costs of supporting people in the community,” McHale said.
The Kinney Center for Autism Education & Support at St. Joseph’s University, which offers a wide range of services for individuals with autism and is also a training site for students who want to go into autism support, came under a different kind of pressure this year.
In the spring, regulators informed management that its day program for adults did not meet requirements for community-based services because it is based on the university’s campus.
The Kinney Center had been serving six adults in an adult day program, but after Dec. 15, that number will drop to three because that’s how many people management believes Kinney can support in the community, away from campus, said Angus Murray, Kinney’s executive director.
A far bigger loss of services happened this year in Delaware County, where Elwyn decided in May not to reopen facility-based work programs that served about 200 families. Elwyn’s remaining day programs will primarily serve individuals who live in Elwyn facilities, the nonprofit told families.
Adapting to new service models that are more community-oriented will be hard for families who depended on Elwyn for decades, said Eileen MacDonald, executive director of Delaware County Advocacy & Resource Organization, a Swarthmore nonprofit that advocates for people with intellectual and developmental disabilities.
“It’s a difficult time right now,” MacDonald said.
