Disability advocates see hope in expanded waivers
The new year brought new hope for people with disabilities — and their families — who are hoping to access the services they need in order to find work.
Gov. Tom Wolf announced an expansion of the community living waiver, a Medicaid-financed program designed to help adults with developmental disabilities — such as autism and Down syndrome — access a wide variety of services rolled out last year.
According to Nancy Thaler, deputy secretary of the Office of Developmental Programs, these waivers “can help people live where they want to live, work where they want to work, and participate in the community in the ways they want to participate in the community.”
Administered through the developmental programs office, a division of the Department of Human Services, community living waivers will now be available for 1,850 people, enabling them to use services like transportation, vocational training, occupational therapy and other supports crucial to helping them achieve more independence. Though the waivers went live at the start of the new year, Wolf expanded them shortly thereafter to help patients left on waiting lists.
According to Thaler, the new waivers cover services up to $70,000. Previous waivers, known as person/family directed support waivers, were capped at $33,000. Consolidated waivers — those reserved for individuals with extraordinary eligibility requirements such as long-term residence in a facility — are not capped.
“So you might think of it as: we have multiple waivers, and the threshold of service delivery is different depending on which group you are in,” said Thaler. “What we find is the $70,000 amount is the highest level of expense that we experience when we’re supporting people who are living with their families.”
The amount the department spends on employment services has expanded in recent years. According to its most recent annual report, the developmental programs office spent $39.1 million on employment services in the 2015-2016 fiscal year, up from $28.6 million in 2011.
Adults with developmental disabilities face employment barriers unseen by nearly any other demographic group. According to a 2017 Drexel University study of 31 states including Pennsylvania, 14 percent of adults with autism were employed, making it “the least common outcome for adults with autism spectrum disorder,” according to the authors of the report. Over half end up working unpaid in a facility setting and over a quarter do not work at all.
Many recipients of the waivers expanded by the governor can use them to access vocational training: opportunities for adults with disabilities to pursue and grow their skills in order to compete in the private job market. The eventual goal of such programs is to help people with disabilities be competitive with people without disabilities.
So said John Heckman, director of the S. Wilson Pollock Center for Industrial Training in Hampden Township, a vocational program run by The Arc of Cumberland and Perry Counties. The 230 daily participants at the center develop skills ranging from collating and packaging to food service and preparation, including making prepared meals for military recruits and the Department of Homeland Security.
Heckman applauded the waiver expansion and expects it will help future clients obtain the kind of training offered by the center.
“Those are people who still need support and assistance to maintain their work skills, but the ultimate goal is moving them into a competitive job in the community,” said Heckman. The Pollock Center trains people with disabilities then contracts with employers in the region, including Dickinson College, Messiah College, Wal-Mart and American Mint, a coin shop in Upper Allen Township.
The goal, said Heckman, is to graduate participants from programs like his to full-time jobs.
“We’re probably a somewhat unique business, in that we try to get rid of our best employees,” said Heckman.
Outside of just employment, services covered under the waivers include everything from assistive devices to behavioral therapy. Individuals in need of supports are frequently left on waiting lists. According to the Pennsylvania Waiting List Campaign, over 13,000 Pennsylvanians with a disability are on a waiting list for support services, with over 4,000 listed as in emergency need of such supports.
“We know that so many people are waiting for services and we are thrilled ODP is using its services in ways that address the emergency waiting list,” said Maureen Cronin, executive director of The Arc of Pennsylvania.
According to Cronin, whose organization runs chapters across the state to provide advocacy and services to people with autism, typical vocational evaluations can fall short, Discovery — a specialized service available under the waiver program — aims for a whole assessment to help individuals discover their aptitudes.
“It’s a much deeper look at a person’s life,” said Cronin. “Talking with their families, seeing them in different settings. Really, really understanding the person, then being able to figure out what skills can be drawn upon for employment then talking with employers.”
According to Cronin, a typical conversation with an employer focuses on hiring people with disabilities to complete foundational tasks that support professionals who would be doing them otherwise.
“An example would be you have nurses in your hospital doing sterilization,” said Cronin. “Wouldn’t it be nice if your nurses did just nursing and you hire people with disabilities who can be trained to do the sterilization?”