Graduating Into the Unknown: Idaho Teens Come of Age in the Generation of Autism 

When state programs end, parents are left in the lurch

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"Someone like Barrera might add value to a business but most need job coaches. Companies and business need to say, 'What can these kids do for us? This applies to not just people with autism but people with all disabilities," J.T. Miller said. "We should all have opportunities to be productive regardless of what that opportunity is."

Services that aren't eliminated by budget cuts are sometimes phased out because a child may no longer be making progress in an area a therapy aims to improve or they may age out of a program, such as IBI, which targets pre-school-aged children.

"They work really hard when they're young, but if they're not making any progress, then they leave that piece out," Tierney said.

Limited hours of group therapy, personal care services and adult day care are available for some Medicaid-qualifying young adults with autism, but the hours don't fill up a 40-hour work week and they don't offer the individual attention or personalized skill building they're offered as kids.

"Most of the effort at that point is aimed at sustainable community living," Shanahan said.

But the Millers and Tierneys struggle to grasp the logic behind linking services with age or skill acquisition.

"If it takes 20 years to learn a skill, that's money well spent. We should all always be learning," J.T. said.

Parents of children with autism said that each cut, each passed-out program and each elimination leaves more and more families facing even more uncertainty in an uncertain future.

"He needs 24-hour care," Jo-Ann said of Barrera. "You can't just leave him at home and he can't get a job."

The Millers have relied on an army of support since Barrera's diagnosis as a 3-year-old. IBI specialists, a dedicated child-care provider, development therapy aides and teachers have helped Barrera function better at home and school.

On a typical day, you might see Barrera and his classmates riding the city bus through Nampa, traversing the aisles of Paul's Market or combing the shelves at the local library. Behind them stands Lichte.

Lichte and those productive days are slated to disappear come June when Barrera matriculates by way of age, rather than by graduation. Most students leave high school behind after meeting credit requirements but students with disabilities stay in school until they meet age requirements. The 21st birthday marks the end of education for Barrera and his peers.

"After, that, you think, 'Now what?'" Jo-Ann said.

And a twinge of dread tampers the hope that defines most graduations.

"When you sit down and really think about it, it's overwhelming. It's difficult. It's hard," Tierney said. Seven more years of questions buffer her son Nicholas from full days of support and the unknown.

Miller estimates graduation will usher in 10 hours of unattended care for Barrera per week. Those are 10 hours that are now filled with school-provided social, speech and occupational therapy. And that's 10 hours that Miller may not be on the job.

"There aren't really any specialized services for adults with autism," Hansen said. "It's a good system, but it could be so much better."

While many from the class of 2012 filled out college applications and toured the perfect school, Jo-Ann researched day cares and her own career options.

Barrera's post-graduation plan looks something like this: A few developmental therapy hours, coupled with some personal care services sandwiched between day care.

A lack of adult day care services has Jo-Ann relying on the child-care provider that has cared for Barrera over the years. But it's a small facility that caters only to infants and children. Sitting among the toddlers and preschoolers in the play area will be 22-year-old Barrera--there by the grace of young parents who signed waivers that granted the day care permission to have a non-employee adult on the premises.

"Everything we have out there is for young kids and kids who are just diagnosed. We know there is nothing out there," Hansen said.

"We have individuals out there who are completely forgotten about. They have no family. This is a group that is hidden," J.T. said. "This is a population that is at risk, especially if they don't have family."

Last Christmas, Miller realized that residents at three area group homes hadn't had Christmas in five years. So J.T. and Jo-Ann gathered up presents for a bunch of enthusiastic 70-something-year-olds that were long overdue a visit from Santa.

"What are we doing in society as a whole if we can't take care of our more vulnerable?" J.T. asked.

The Millers figured they could step up and fill in where budgets have tapered off and supports have phased out. They've seen members from their church step up again and again. Extended family steps up. And they hope to see more volunteers step up, too. It's one solution that families say could save a generation from graduating into gaps.

"We know that there won't be enough government support," Goring said. "We know that it will not just take public funding but it will have to be a public-private partnership."

That partnership could offer the kind of gentle guidance Lichte practices to move Barrera forward.

"People with autism have a wide range of skills. They are very hard working, they're honest, and they're dedicated. And if you ask any employer, these are all things they're looking for," Goring said.

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