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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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Yet their lives can follow paths that are just as unique as each individual's symptoms. Some hold Ph.D.s and teach at universities while others never grasp the capacity for language and reside in group homes with 24-hour supervision. Many fall somewhere in between and depend on Medicaid-funded services to keep them at home with their families and their parents or caregivers employed.

But the supports that kept many Idaho adults with autism out of institutions have slowly disintegrated with declining state revenues and Health and Welfare budget cuts, leaving some families to wonder what will happen when the yellow bus no longer stops at their front door in the morning.

"I'm concerned that there is so little focus on how to care for an ever-increasing number of people with autism as they move into adulthood. I'm also worried about what will happen to my girls after my husband and I are gone. It's hard enough to save for retirement for us as a couple, much less fund special-needs trusts for them to last their lifetimes," said Katie Romans, who is raising two daughters with autism, 16-year-old Courtney and 19-year-old Taylor.

Romans typifies the trailblazing moms and dads who often fill in gaps left by budget cuts and sparse resources with innovation and above-and-beyond parental involvement and sacrifice. Romans went back to college after her daughters were diagnosed with autism and earned her degree in speech pathology so that she could help her daughters get the maximum amount of intervention and therapy. And now that she works for the Boise School District, she knows the ins and outs of programs that are offered. Her daughters are enrolled in the Boise School District's STEP program, which helps transition 18- to 21-year-old developmentally disabled students into adulthood. Romans and other parents laud the STEP and IBI programs for giving their kids a boost, but Romans said a lot of uncertainty awaits the family on the other side of graduation.

"Now, Taylor has only two more years of school, and I have no idea what I'm going to do with her after she gets out of school. She only gets 11 hours of personal care services per week now, and when that reduces after she's 21, I don't know how I will be able to work and keep Taylor safe and engaged."

Some families find it impossible to fill in those gaps. And one study found that parental unemployment often serves as the only net that keeps an adult child out of an institution and living at home.

"None of us are fully employed and we all have at least one degree. We're piecing together part-time work," Dolores Totorica said of other moms who, like herself, are parenting an adult child with autism.

A study published this spring in Pediatrics found that mothers who have children with autism earn 56 percent less than moms with non-disabled kids and 35 percent less than mothers who care for children with other illnesses. The authors found the pay gap mostly falls along gender lines, with fathers reporting a steady income.

"They earn less because they have to stop working or reduce work to care for their child," Goring said. "It's a very real issue for many families."

A Medicaid Matters rally and recent Health and Welfare appropriations testimony lauded the importance of Medicaid services for maintaining the health and independence of people with disabilities. And parents of children with autism say developmental state programs are vital in not only ensuring that their children reach their potential but offer parents respite from 24-hour supervision so they can work outside of the home.

Idaho spent $32 million in 2011 on services and therapies for the state's 3,194 children with developmental disabilities, averaging $10,077 per child. Those costs don't include health care and increase as a child with autism reaches adulthood. Last year, Idaho spent $114 million on nonmedical services for 3,600 developmentally disabled adults at an average cost of $32,637 per person.

But lawmakers have chipped away at programs in recent years in an effort to keep those numbers down. IBI was reduced from 30 hours of services per week to 22 hours in 2009. Last year, developmental therapy for adults was dropped from 30 to 22 hours. In 2010, adults with a co-occurring disability had to begin choosing between developmental disability or mental-illness services. And three years ago, job coaching was eliminated for adults.

"They try to preserve as much as they can," Shanahan said.

When the state can't preserve programs or launch vital services, parents often have two choices: an institution or a commitment to intensive parental involvement and hands-on guidance that lasts well beyond the young adult years. The latter often comes at great financial sacrifice, tossing career, retirement and personal plans aside.

"The world can get smaller once school is over. We've been working really hard to keep it from getting smaller, but it gets smaller," said Angie Tate, who parents a 22-year-old daughter with autism.

Tate knew her daughter, Charlotte, needed a job, needed recreation and needed to get out of the house after she graduated, but when she looked around the community, there just wasn't anything out there that fit her daughter's needs. The family looked into group homes, which can provide some independence in a structured and supervised living environment, but the Tates couldn't find any openings in quality, local homes.

"There wasn't a vacancy sign that said, 'Choose this life path.' We're going to have to make it on our own," Tate said.

Many recreational and social programs that serve developmentally disabled adults just aren't equipped to meet the varied and unique needs of each adult with autism, Tate said. And by the time Charlotte graduated out of public schools, job coaching was no longer available. So the Tates hired their own job coach and made arrangements so that Charlotte could work at the family manufacturing business, Campbell Company, where Charlotte helps assemble push-buttons for pedestrian cross walks for a couple of hours per day.

"I'm lucky, I have the resources. But for a family on a tight budget, it's even harder," Tate said.

And things are even harder for a divided family, Tate said. She and her husband have tag-teamed the extra efforts that have gone into raising Charlotte and helping her come of age.

"It takes two people to do it. If you're a single parent, how do you do that?"

The Millers also stand as a formidable team behind Barrera but they say most families need some kind of additional support, especially if both parents work full time outside of the home.

"You might only get 21 hours [of services] in the week. But there are more than 21 hours in the week," Barrera's mother, Jo-Ann Miller, said.

Jo-Ann isn't sure how she'll fill in those gaps come June. Will she need to quit her job? Will the woman who has taken Barrera into her day care during his teen years be able to care for a 20-something amid her charges of toddlers and infants?

"As my child gets older, what are we going to look at and what changes are going to need to be made?" Rochelle Tierney said of the life plans her family is already considering for their son, Nicholas, 14.

"We do everything we can, but what's going to happen is always in the back of your head."

Before the latest rounds of budget cuts, Barrera and others like him could have filled those gap hours with developmental therapy, vocational training and independent living guidance. The supports would save the Millers from having to make some hard choices and spare family incomes, autism advocates say. And Barrera could be living a more productive life, his stepfather said.

"It's not about making money. There's value in all work," he said. "But if all you present someone with is the option to clean tables, then that's all they think they can do."

"We started to ask the teachers what else he can do besides clean tables. And they asked, 'What does he like to do?'" Jo-Ann recalled.

You don't need to ask Barrera what he likes to do. Barrera's words remain sparse. But his actions speak loudly, his parents say. His daily morning routine reveals three passions: Barrera likes yellow school buses, libraries and dishing out compliments. His parents see these passions as gifts that Barrera could use as a library aide, host or, a school bus monitor.

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