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.”
14 | MAY 2–8, 2012 | BOISEweekly
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 WWW. B O I S E WE E KLY. C O M