News » Features

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

When state programs end, parents are left in the lurch


It's one of those rare, quiet moments at Estevan Barrera's school. Barrera's classmates have left for the day and he has his teacher, Eric Lichte, or simply Mr. Eric, as Barrera calls him, all to himself. Lichte and Barrera's parents sit around a classroom table discussing the four years of strides Barrera has made in Lichte's class and what the future holds after Barrera graduates in June.

The meeting isn't part of Barrera's usual routine. He asks when he can go home. And he circles around the activity table where Lichte and his parents are conferencing. Voices talk about the future, plans and the unknown. Barrera circles again then pauses for a moment. He stands above his seated stepfather, bends his neck and quietly kisses his stepfather's balding head.

Barrera moves around the table and pulls out a chair he neatly lined up earlier that day next to Lichte. He sits down.

"You're cute!" Barrera tells Lichte.

"Thank you, Barrera. But we don't tell boys they're cute. What do we tell them?" Lichte's gentle voice redirects Barrera to find the best way to pay a compliment to a fellow gentleman.

Barrera's parents count the days until that gentle, guiding voice will no longer be a part of Barrera's routine. The date stands as a milestone on most parents' calendars, but Graduation Day 2012 marks unchartered territory for the Millers.

Barrera, 21, shares his coming-of-age story with a boom of cohorts that joined the swelling number of children diagnosed with autism in the 1990s and 2000s. Many have grown up under public education and Medicaid-funded supports that either disappear around the age of 21 or have fallen victim to recent budget guts. That leaves advocates wondering if the state and local communities can build the village needed to support the anticipated surge of autistic adolescents slated to transition into adulthood.

"I don't know if our community will be ready for it," said Meredith Adams, a Boise advocate for children with disabilities.

In 10 years, Adams' son, Bridger, matriculates through the public school system that has buoyed him and the family through the initial diagnosis and years of special education. But schools give children like Adams' son more than a home to learn. The buildings house experts in her son's diagnosis and specialists who know how to turn delays into adaptations and disabilities into abilities.

"We were talking about what we wanted to do with the class. And that's teaching independence," Lichte said of the Nampa classroom that usually buzzes with the kind of activity you see in the real world. Students who occupy a sort of limbo between childhood and adulthood shuffle around, planning menus, setting budgets and lining up chairs.

"But not all of our students are going to be independent, so we need to instill some confidence," Lichte said.

More 500,000 children with autism will come of age during the next decade, according to Autism Speaks. The national advocacy organization for people with disabilities estimates that 1.5 million adults with autism already live in the United States. Idaho Autism reports a 2,800 percent increase in the number of children diagnosed with autism between 1993 and 2007.

"We know that as a society we are ill prepared to deal with the number of people with autism who will be entering adulthood. We've seen an increase in the number of children diagnosed with autism in the last decade. At the same time, the budgets have not increased. In fact, they've decreased," said Lisa Goring, vice president of family services with Autism Speaks. "When a child is school aged, they have educational entitlements that entitle them to services. But once some graduate, those entitlements are gone."

The Idaho Department of Health and Welfare doesn't track service enrollment for people with autism. So it's difficult to estimate how many adults with autism are using services, how enrollment has changed, or if Idaho has seen a boom in severe autism diagnoses and if these diagnoses will translate into a surge of young adults needing additional supports in the coming years. But the Intensive Behavioral Intervention program offers some indication. The Medicaid-reimbursed IBI program offers intensive therapy to children with developmental disabilities who display challenging behaviors. The often daily, one-on-one therapy offers individualized interventions aimed at helping a child function at home and in the community. The program serves children with a range of disabilities, but Tom Shanahan, Health and Welfare spokesman, said many of the kids enrolled have an autism diagnosis. And the state has seen the enrollment in that program swell. The program didn't even exist before 2002, and during its inaugural year, enrollment hit 193. By 2011, enrollment jumped to 587.

Advocates say those numbers offer some insight into what's around the corner. The IBI program mostly serves individuals at the severe end of the autism spectrum. They say it's those children who are going to be in the most need of additional supports as adults. The IBI numbers suggest a swell in autism around the state and an impending surge in the number of adults needing state-funded services in the future. But the ever-evolving diagnostic criteria for autism and heightened awareness raises questions as to whether autism is increasing and if the state will see a boom of adults needing complex, lifelong care.

"I think that there are a lot of questions about autism. Is there an increase in autism or are we just better at diagnosing autism?" Shanahan asked.

Once considered a rare disorder, the 1990s saw diagnoses skyrocket. The Centers for Disease Control and Prevention report that one in 88 children now has autism or a related disorder. That's up 22 percent from 2002. And the CDC estimates that as many as one out of 54 boys now has the developmental disorder that stunts communication, motor and social skills and sometimes causes difficulties processing sensory input. Schools have mostly offered the bulk of supports to these kids and their families, but once children with autism are phased out of the public-education system, they face a horizon of uncertainties.

"This is a population that is forgotten about because when they reach adulthood, they sit around at home," said Jerry Todd "J.T." Miller, Barrera's stepfather and member of Idaho Parents Unlimited, a support organization for families living with autism.

Autism Speaks reports that about 56 percent of people with autism graduate from high school, but what happens beyond that varies as much as the disorder itself. People with autism reside somewhere on a spectrum in communicative, social and developmental ability. For some, the manifestation of autism remains subtle throughout life, bypassing the diagnosis of doctors, the attention of teachers and the understanding of family and friends. Sometimes it takes a diagnosis of a child with autism for these individuals to note that something with them might also be amiss. Others like Barrera live in the more extreme limits of the continuum. Some remain nonverbal and rely on lifelong supports.

"One of the biggest challenges facing people with autism is underemployment and unemployment," Goring said. "And then there's aging parents who are concerned about what will happen to their children when they are gone."

With so many living somewhere along the spectrum, it's hard to define the typical post-high school life of a person with autism, said Katherine Hansen, executive director of Community Partnerships of Idaho. One study found that 18 percent of adults with autism were employed and 14 percent attended college. Most adults--56 percent--utilize day services of some kind while 12 percent have no activities at all. Autism Speaks reports that the unemployment and underemployment rate for adults with autism runs as high as 90 percent.

"It can be very isolating," Goring said of the closed doors that often meet a student with autism at the end of the graduation line.

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.

"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.