The Other End of the Spectrum: Autism isn't just a childhood disorder but are we prepared to serve adults? | News | Pittsburgh | Pittsburgh City Paper

The Other End of the Spectrum: Autism isn't just a childhood disorder but are we prepared to serve adults?

"In adulthood, the systems really do fall away."

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Christopher Merchant is waiting, too. Though he's been happy at school and working at the car dealership, he's on a waiting list to see if he'll get state funding so he can continue services like the one-on-one job coach he currently has.

"There are cases where family members have lost their jobs because they can't leave their kids home alone," explains Lisa Tesler, policy coordinator for the PA Waiting List Campaign. "It's a very significant problem."

The fight to provide appropriate services for people with autism once they're adults largely centers on Medicaid waiver programs.

"Prior to 1981, your only option was to receive supports and services through an institutional setting," Tesler explains. The waivers were designed to give states a way of supporting services with the "same level of support in your home or community," while avoiding institutionalization.

Until 2008, there was no specific waiver program for adults with autism. Instead, people with autism had to rely partly on two intellectual-disability waiver programs — the Person/Family Directed Support Waiver (P/FDS), which provides up to $30,000 per year, and the Consolidated Waiver, which has no funding limit. (On average, participants in the consolidated program received about $108,000 worth of services last fiscal year, and the waiver is generally used by people with more costly residential/group-home placements.)

"In Pennsylvania, and many other states, there wasn't a queue for people to get in if they weren't [intellectually disabled]," explains Wall, the director of the state's autism bureau.

That's partly why the state created an Adult Autism Waiver. It can allow certain services to continue and is available to anyone with autism regardless of IQ; nearly half of children diagnosed with autism have normal or high IQs.

The autism waiver "is pretty unique and seems to work well for adults who are living with families and don't need 24-hour supervision or support," says David Gates, a lawyer with the Pennsylvania Health Law Project.

And while enrollment in the Adult Autism Waiver has increased every year since 2008 — and the legislature has authorized 100 more slots — it only served 424 people last fiscal year and has an "interest list" with 1,177 people.

The intellectual-disability waivers — available to people with autism with lower IQs — serve a combined 28,248 people and have a waiting list of about 14,000.

"It's a national problem and there are advocates at the federal level to make home and community services for everyone who has Medicaid," says the Waiting List Campaign's Tesler. "But it's expensive — that's really what it comes down to."

It's also complicated. People with autism don't just have to navigate one social-service system, the Health Law Project's Gates explains, and "There's some confusion about which service system to choose. There are pros and cons to each, and each has its own eligibility rules, intake procedures, service providers and services."

Tesler adds that for parents of children with autism, "I have to understand Medicaid rules, I have to understand Medicaid law, I have to understand [the Office of Vocational Rehabilitation's] rules, I have to understand Social Security ... I have to find doctors in my community. Trying to coordinate everything is a real challenge."

Lisa Merchant is optimistic Christopher will get off the P/FDS waiting list by the time he's 21 — and for now, the odds look good.

The legislature has created enough P/FDS waiver slots to meet the demand of current high school graduates, Tesler says, though it won't reduce the overall number of people on the waiting list. Creating those slots for high school graduates is also a "year-by-year decision. There's no assurance to families that there will be [funding]," Tesler says.

For Merchant, though, getting her son off the intellectual-disability waiver waiting list isn't an abstract policy problem. When Christopher Merchant turns 21, getting waiver funding could affect his — and his parents' — ability to keep their jobs

The waiver "would allow transportation to and from his place of employment and it would pay for an aide to go with him and help him," Merchant explains. "If we don't get off the waiting list, basically he'll have no services."

The autism bureau's Wall acknowledges being on a waiting list creates a lot of uncertainty among parents. "It's a really hard thing when you have families who call and they have a 20- [or] 21-year-old son or daughter and they are rightly concerned about the future. I don't have an answer."

But Wall adds that there's a benefit to having a relatively small autism waiver for the moment: "While our programs are small, [we're] going to improve them," she says

Not everyone with autism will need a waiver, she adds, and the bureau is making strides in serving as a hub for parents and offering novel programs like the Adult Autism Waiver.

For now, Lisa Merchant isn't panicking. She's confident their family will be able to figure something out if Christopher doesn't get funding. But the stakes are high: "I just want him to have a place to go in the morning he's happy to go to. [...] To have a purpose."