TOO SMART TO FIND WORK
With an IQ marginally above the federal cutoff, Eric Heppard cannot get a job for the disabled
Part three of four
Editor’s Note: This is the third in a series exploring challenges faced by the disabled. The final part will run Jan. 16.
PHILADELPHIA — Three years ago, Lisa and Dan Heppard were stunned to learn that the IQ of their son, Eric, who has autism, was higher than they’d known.
“We always thought it was in the 70s,” says Lisa. “But it was 81.”
“We were really surprised,” says Dan.
The unexpected score, however, derailed the Heppards’ postgraduation plans for Eric, now 24, costing him a livelihood that had seemed perfect. He had been offered a job at a packaging business that offers supervised work for adult employees with intellectual or developmental disabilities (I/DD). But his IQ exceeded the cutoff set by federal labor laws permitting companies to pay less than the minimum wage to disabled employees.
Three years later, Eric remains unemployed and the Heppard family — which includes daughter Stephanie, 26 — is still reeling.
“It sounds terrible to say this,” says Lisa, out of earshot of Eric in the Heppards’ Warminster home, “but I almost wish his IQ was lower. He’d have a job right now.”
Such are the non-traditional wishes of parents caring for adult children like Eric, who have I/DD and are considered high-functioning. He is verbal, able to manage his physical needs, can fix himself a bowl of pasta and find his favorite videos on YouTube.
But he needs prompting when it comes to mastering tasks that require social interaction, consistent reasoning and abstract thinking. If he is excited, he may forget
to look both ways before crossing a street, for example. While he knows how to work an automatic retailcheckout machine (he scans the items; Lisa swipes the credit card for him), he has difficulty interacting with cashiers at checkouts that are manned.
While enrolled in the special education program at Bensalem High School, Eric underwent training through the Bucks County Intermediate Unit’s “Spirit Program,” designed to expose students with I/ DD to different types of work activities. He especially loved doing piecework — so much so that he actually had to be reprimanded for skipping mandatory breaks. By the time he was 21, he was known as a motivated, enthusiastic worker and was recommended for employment at Associated Production Services Inc. (APS), a packaging business headquartered in Trevose. APS runs a handful of “sheltered workshops” — supervised workplaces for adult employees with I/DD.
The Heppards were over the moon. At APS, their son would have a reliable schedule doing something he loved, pocket a regular paycheck and stay connected with school friends he’d met through Spirit. And Lisa, maybe, could return to work (she’s 49 and a registered nurse; Dan, 50, is a pharmacist).
“We were so happy,” says Lisa, who belongs to a parents’ group where the difficulty of finding employment for their children with I/DD is a frequent topic of discussion. “We thought it would be hard to get Eric a job, but then this fell into our lap.” There’s a reason it felt like a gift. Children with disabilities are federally entitled to an appropriate education until age 21. The services provide more than tailored academic or life-skills instruction: They give a child a place to be each day and a feeling of belonging. That’s no small thing in a world that too often sees a person’s disabilities before it sees the person.
The school entitlement also gives parents peace of mind and a predictable schedule that helps a family function.
After 21, though, the entitlement ends and it’s on parents to find new ways to fill their grown children’s days. The shift is so abrupt, parents grimly call it “falling off the cliff.”
Employment for people with I/DD is now an expectation
In the past, employment for young men and women with I/DD was rarely seen as an option. But for those in Eric’s generation especially, who have spent their lives hearing about their right to be integrated into broader society, employment is an expectation.
“Steph has a job,” Eric says plaintively, referring to his big sister; he envies her easy fit in the work world. “I want a job, too.”
Ideally, high school administrators would begin working with children and their parents long before graduation to figure out what the next step might be.
But the ideal is elusive, and not just in school districts that are underfunded or unenlightened. Even the most thoughtful school counselors and savviest parents have a hard time finding appropriate employment for adults like Eric: young men and women who can independently handle activities of daily living (like eating, bathing, toileting, walking and dressing), but whose disabilities keep employers from seeing what they might contribute to a workplace. The numbers tell the story. Only 33.7 percent of workingage adults with disabilities are employed, compared with 72.9 percent of people without disabilities, according to the Institute for Community Inclusion, based at the University of Massachusetts. For working-age adults who have intellectual and developmental disabilities, the number plunges to just 16 percent.
No wonder the Heppards were giddy about what looked like a sure job offer. Their son had fallen off the cliff into a wide net that could hold him for years, maybe for life.
The biggest obstacle to finding a job is society’s view
The Heppards’ hair-pulling frustration is playing out during a tumultuous and intriguing time in the world of employment for people with I/DD.
In years past, employment expectations for the Eric Heppards of the world were worse than low. They simply didn’t exist.
People with I/DD were typically warehoused for life in state institutions, invisible to the outside world. In the past few decades, most of those institutions closed as investigations revealed systemic and horrific abuse and neglect of residents.
Those residents, now living in the community, wound up congregated in day programs — some of them high-quality, some of them no more than stultified babysitting. That’s still often the outcome for young adults like Eric: They may be growing up in their family homes instead of institutions, but after age 21, too many of them graduate from high school to the sofa.
The biggest hurdle to employment, she says, is society’s narrow view of what adults with I/DD can accomplish.
It requires creative thinking, says Susan Schonfeld, executive director of Community Integrated Services (CIS), a job-search and job-support agency that helps people with disabilities find employment in startling ways.
“We start with the assumption that everyone, disabled or not, has a personal genius and something to bring to the world. We ask: What is it and how do we tap into it?” says Schonfeld.
CIS was able to place Michael Urtz, 27, who has Fragile X syndrome, in an internship at Havertown Health & Fitness while he was still enrolled at Haverford High School. At the time, the gym was using an outside service to supply and launder towels. Michael enjoyed unpacking, folding and shelving the linens. As graduation approached, CIS made a proposal to gym owner Mark Rodney.
If CIS was able to find funding to install a commercial-grade washer and dryer at the gym, would Rodney hire Michael to handle the towel service on site?
“We really liked Michael,” says Rodney, who has owned the club since 1989 and has employed many young people he has met through the gym’s volunteer work with Special Olympics. “We thought it was a great idea.”
In the seven years since, Michael has added maintenance tasks to his job — wiping down equipment, cleaning windows — and is paid minimum wage for his time: three hours a day, three days a week.
“Michael knows he belongs,” says his father, Gary Urtz, 65. “He can walk down any street in Havertown and people will say hello to him. He also has a sense of pride that he’s working and has an income, just like other people.”
Urtz credits CIS and Rodney for Michael’s happiness. “A business owner can come up with a lot of reasons not to employ special people like Michael,” says Urtz. “But it takes a special employer to come up with reasons to employ them.”