This article is the first of a four-part series.
Forty-one-year-old Becky Leonard was sitting in an office shredding paper at Northwest Human Services, 620 E. Germantown Pike in Lafayette Hill when her supervisor, Lorraine Betz, introduced me as “Sue Ann, the reporter from the Chestnut Hill Local.”
She removed her earphones and placed them on the desk next to her, brushed her shoulder-length brown hair out of her face and glanced at me briefly before looking down and away.. I complimented her outfit – a professional dress shirt with a mauve rose pattern on it. She looked up and smiled.
“Thank you,” she said.
In many ways, Becky Leonard is like every other adult struggling to make a living. Except that for Becky, holding down a steady job is a daily challenge because she has autism.
Lorraine asked Becky to show me her job at NHS. She proceeded to give me a tour of NHS, showing me her desk and the mailroom, introducing me by name to every person we encountered and demonstrating how she restocks the copy machines.
“We have seen Becky blossom since she began working here,” Betz said. “In the beginning, she was sometimes reluctant to come to work, but – like all of us – she was quickly motivated by her paycheck.”
Becky told me she needed to buy a Blue-Ray DVD player and 10 DVDs. At one point during the interview, instead of responding when asked a question she didn’t understand, she said, “I don’t understand.” The question was not specific enough. Her job coach quickly rephrased the question.
Betz said that when Becky first started working at NHS she rarely interacted with anyone and would often get upset if someone came into her work area. But now, Betz said, she begins her day by greeting everyone in the office and prefers performing activities that provide her the opportunity to interact with others.
Betz sad Becky is extremely independent, focused, organized and is more outgoing since working at NHS.
“Becky is a ray of sunshine,” Betz said. “She makes everyone smile and reminds us to take a break from work. She has many gifts and talents that she is able to put to use here. Becky’s upbeat and positive attitude is contagious.”
Becky’s job at NHS has enabled her to build social skills and allowed her to become a productive, contributing member of society.
“She is very flexible in her routine, which is extremely rare,” Betz said. “She truly enjoys helping people at the office. If you stop and ask her for her help, she will change her routine. She’s always up for everything.”
For someone who has autism, Becky is unusually independent. She lives with a roommate in a house in Phoenixville owned by Autism Living and Working (ALAW) and patients’ families.
Betz said the staff at NHS has really benefitted from Becky’s presence.
“She has raised awareness about autism,” Betz said. “Everyone here is an advocate for Becky.”
Becky is one of the lucky ones.
A recent study published in May by the journal Pediatrics found that one in three autistic young adults have no paid job experience, college or technical schooling after nearly seven years out of high school. According to Holly Kofsky, a spokesperson for the Greater Philadelphia Chapter of the Autism Society, a recent study rereleased by the U.S. Bureau of Labor Statistics stated that 79 percent of adults with autism are without work.
Although the state is required to provide institutional care for children and adults with autism, Becky is one of the first children with autism to live at home and go to school under entitlements. She is receiving services under the OBRA (Omnibus Budget Reconciliation Act) Medicaid waiver, which permits those with a disability to waive their right to institutional care and to receive services at home, in a group home or other setting.
Unfortunately, however, she will lose her job of four years and her current residence in Phoenixville if the current revisions to the waiver are not changed. Instead, she will be placed in a group home or other institutional setting with little or no opportunities for socialization within the community.
Betz said it would be “detrimental to Becky’s health” if she were to lose her job because she lost support services due to budget cuts.
(To be eligible for services in an OBRA Medicaid waiver, a person must be determined to need an institutional level of care. To qualify for the waiver, an individual must have a developmental disability and “other related condition,” a category that includes autism. A specific waiver for those with autism was established in 2008.)
Becky’s parents, Joe and Virginia Leonard, have filed a class-action suit against the Pennsylvania Department of Public Welfare.
The Leonards, both of whom are in their 70s, have two adult children with a severe form of autism.
“For over 10 years now, Matthew and Rebecca and their housemates (Matthew lives with two men with severe autism and Rebecca lives with one woman with severe autism) have lived successfully in the community,” Virginia Leonard said. “They all hold competitive part-time jobs. The 24/7 services they require are funded by the OBRA Medicaid waiver and provided by a private, nonprofit agency. Their houses are owned by LLCs created by their families and their housemates’ families, and are operated without Department of Public Welfare (DPW) funding.”
It is an innovative public-private partnership of publicly funded services but privately funded and managed houses that are a national model.
“We thought that this successful arrangement, into which we have poured much sweat, equity and monitoring over the past decade, would let us die in peace,” Virginia said. “We were tragically wrong.”
Matthew and Rebecca are members of the first generation to benefit from the requirement that even people with severe disabilities are entitled to receive an education.
The Leonards said they “believed that 40 years of public policy favoring community programs over institutional care made the future secure [for their children].”
“My children’s life in the community is now in jeopardy because the Office of Long Term Living has drastically revised the definition of community integration as a short-term service limited to no more than 12 hours a week,” Joe Leonard said.
He added that community integration services provided the Leonards’ children with “coaching, modeling and behavior management supports they need” to live and work independently in the community.
“The revised OBRA waiver no longer offers any service adequate to maintaining an adult with severe autism in his or her home,” he said.
The Leonards and thousands of other families are now faced with the possibility of “institutional placement” for their children.
Despite Matthew and Rebecca’s significant handicaps, they have learned to read, type and gain social skills that have enabled them to be active, contributing members of their community.
“Acting recklessly and with utter disregard for the lives of individuals supported by the OBRA Waiver, DPW has not only destroyed a public-private partnership model of community services for adults with severe autism, they will force Matthew and Rebecca into a more restricted living situation and a vastly more expensive service,” Joe Leonard said.
According to Kofsky, the cost of institutionalizing just one individual with autism for a year would be approximately $240,000.
Waivers, such as the autism waiver, allow people to remain in the community by waiving their right to institutional care, but now the adult autism waiver is closed. Kofsky said the Commonwealth of Pennsylvania has issued 300 waivers.
According to the Bureau of Autism Services, 33 adults in Philadelphia, 34 adults in Allegheny County and 15 adults in Montgomery County are receiving services under the autism waiver. The adult autism waiver is now at capacity.
The 2010 U.S. Census reported that the number of Philadelphians 18 and over was 1,182,169. According to data obtained from Carrie Miller, director of communications at DPW, the Center for Disease Control estimates that the number of adults with autism in Philadelphia is 13,434. While a large portion of these adults may be receiving some services under other waivers, like Becky. These waivers do not provide the needed services specific to autism.
Older Americans with adult children who have autism can sympathize with Becky’s mother, Virginia.
“We know funding is tight right now,” she said. “But short-term savings that turn back the clock to institutions, because the community-based alternatives have been dismantled, is a recipe for disaster, not only in the money wasted, but the lives as well.”