What Will Happen When the School Bus Stops Coming? Three families share their autism transition stories
Cheryl Hammond has been expecting this day for years. Her son, Kyle, on the verge of his 22nd birthday, will graduate from high school in June and enter the world of disability services for adults with autism.
Since preschool, her son's learning needs have been addressed through the public school system – one that was required by law to serve him. But when he and thousands of other students with autism graduate this spring, they will enter a far more uncertain system. Up to a half million people with autism will reach adulthood during this decade, according to U.S. estimates.1,2 They may wait months or years for help or, depending on where they live, may find themselves ineligible for disability services.
Along the way to 21, teens and their families must answer several questions. Should the young adult apply for U.S. Supplemental Security Income (SSI), which provides financial support to low-income people with disabilities? Should his parents seek legal guardianship of him? What types of job, housing or other programs should he pursue? How does his state determine who's eligible for such programs?
Ms. Hammond is one of three mothers who participated in the Simons Simplex Collection autism project who agreed to share their stories in hopes of helping other families traverse the often cratered road to adulthood. Without careful planning – and sometimes even with it – it can seem like your child is "dropping off the face of the earth when he reaches adulthood," she said.
Kyle's Story: The First Massive Wave of Autism
Her son, Kyle, is among the vanguard of "transitioning youth" with autism in America. Born in 1993, he was part of the first massive wave of children to be diagnosed with an autism spectrum disorder (ASD). In his hometown in northwestern Ohio, as in many small cities and towns, autism was only beginning to enter the radar screens of some teachers and doctors. Kyle began a special education program as a preschooler, but he was not diagnosed with autism until his third hospital stay for behavioral problems. By then he was already 11; most U.S. children today are diagnosed with ASD between ages 4 and 6.3
Only then did his Individualized Education Program (IEP) begin to incorporate methods geared toward autism, his mother said. He began attending a school for students with ASD in eighth grade, and his progress took off.
When Kyle reached 18, Ms. Hammond hired a lawyer and became his legal guardian because she was fearful that others would take advantage of him. The laws governing guardianship of adults with disabilities vary by state. In Ohio, the individual must be unable to take care of himself and his property.4 As his guardian, she can make financial and legal decisions for him. "My biggest fear is that he will be taken advantage of. If he gave you a $100 bill, and you gave him 100 pennies back, he would be in seventh heaven," she explained.
Kyle applied for SSI, which he receives. Once someone with a disability reaches 18, only his own income, if any, is counted when determining eligibility. In most states, SSI recipients automatically become eligible for Medicaid, a U.S. medical insurance for low-income people.5
Preparing for the "transition to adulthood" formally begins in most states between ages 14 and 16 for students with an IEP. Usually that means the school team starts asking the student what he wants to do after high school and connects him to the state developmental disability agencies.
For the Hammonds, the promises and timeline of transition were "a little misleading." The programs that are supposed to help don't always fit the student. "How do you transition to the adult world when the adult world only sees a person's biological or chronological age of 21, and they are not paying attention to his developmental age?" Ms. Hammond asked.
They have worked with several agencies as Kyle nears graduation. In their community, case management is handled by a different contractor than job training. "It's really chopped up bad," said Ms. Hammond, an accountant.
Case managers meet with young adults, coordinate their services, and develop a service plan. Due to high turnover in the field, Kyle has been through a few case managers, which can affect services. "If your case manager hasn't heard about a program, then you don't hear about it," his mother said.
Vocational rehabilitation services – designed to help people with disabilities become employed – have been hit or miss. Last year one agency worked with him during a two-week break from school; he performed landscaping at a state park. After the two weeks, the agency wanted Kyle to miss school to continue with the program. "I said, 'You can work him on weekends or after school, but I'm not pulling him out of school.' They closed his case and dropped him like a hot cake," she said.
Ms. Hammond is nothing if not persistent. She found another job training contractor through the county Board of Developmental Disabilities who agreed not to pull him out of school during academic classes. The contractor is playing match-maker right now, trying to find a job that Kyle enjoys and an employer willing to work with him on social and job skills after graduation, she said.
The Mix of Ability and Disability in Autism
Kyle has that sometimes bewildering mix of ability and disability that seems unique to autism. He struggles with reading, math and understanding concepts like time, but he can do other things that amaze his mother. As a child, he tried to make a telescope using Christmas paper tubes and mirrors. He was not allowed to have sharp scissors for safety reasons, so he secretly made his own cutting instrument using a giant staple, a crayon and tape. He will saunter by while his family is struggling with a puzzle, casually pick up a piece, and stick it in the right place.
Kyle is an energetic go-getter, but he needs direction, particularly around equipment or tools, his mother said. On one job, he was handed a box cutter to open boxes of food. He enjoyed the work and didn't notice that he had repeatedly cut himself with the box cutter. "He came home with 30 marks on each arm," she said. That was the end of that job. "I live in crisis mode all the time that something's going to happen to him. Thinking of him on his own is a really scary concept," she said.
Kyle is on a long waiting list for housing but, right now, he's focused on a job after graduation. "I am looking to be working at the Walgreen Distribution Center, and hope to be a good worker to earn a day off to visit my sisters," he said.
Ryan's Story: A Few Points Makes a Difference
Am I better off moving now so my son can get services in another state? Do we pick up and move from a home we've lived in for 15 years? Where is he going to be at age 30?
The family of 19-year-old Ryan is approaching the transition with a little more trepidation than some others. Ryan's family lives in Connecticut, a state that uses the IQ (intelligence quotient) score to qualify residents for many types of adult disability services. Ryan (not his real name) has autism and an IQ of 71, according to his mother.
In his state, someone must have an IQ below 70 – often considered the dividing line between intellectual disability and "normal" intelligence – to qualify for a full range of disability services and supports, including housing. Connecticut also has an Autism Waiver program to provide some community-based services to residents with ASD and an IQ of 70 and above. Under the autism waiver, a person may get support in his own home and job services in the community but would not receive housing, according to Jennifer Bogin, who directs the Division of Autism Services at the state Department of Developmental Services.
Like many states, Connecticut has long waiting lists for developmental disability and autism waiver services. Which makes Ryan's mother wonder: should she move to a state with a different method of determining eligibility for services, and a shorter waiting list?
"Am I better off moving now so my son can get [adult disability] services in another state? Do we pick up and move from a home we've lived in for 15 years? Where is he going to be at age 30?" she asks herself.
Eligibility, State by State
It's not so much that states aren't competent to figure out who is, and who isn't, eligible for services. It's that states, for cost reasons, set eligibility restrictions.
The Autism Society of America fields many calls from parents like her. "We get calls from people who say, 'We moved to another state where all of a sudden our child is not [considered] disabled anymore,'" reported Autism Society President Scott Badesch. Sometimes these calls come from military families who have no say in their transfers from state to state, he said.
Each state determines which adults are eligible for developmental disabilities services. Some look at a person's overall functioning, needs and/or diagnosis, while some use IQ scores as a primary gateway to services. As of 2008, 16 states used eligibility criteria based on IQ.6 "There is a zero consistency, and it's a major issue," Mr. Badesch said.
The problem is money. "It's not so much that states aren't competent to figure out who is, and who isn't, eligible for services," said Ari Ne'eman, president of the Autistic Self Advocacy Network and the first autistic member of the National Council on Disability. "It's that states, for cost reasons, set eligibility restrictions." Many states still operate institutions, which are costly. If they closed those facilities, it would free up money that could support more people living in other settings in their own communities, which is better overall, he said.
Mr. Ne'eman said using IQ scores to determine eligibility is "outdated."
Certainly IQ doesn't tell the whole story when considering the needs of someone with autism. A recent study found a disconnect between intelligence and adaptive functioning, or how well someone performs everyday tasks needed for independent living. Half of the 417 adolescents with autism studied had daily living skills that were "significantly below" expectations for someone of their age and IQ.7Those teens were members of the Simons Simplex project, as are Ryan and Kyle.
Ryan's mother is in a particular bind when advocating for her son. To get the most benefit from adult services, he needs to appear more dependent. However, right now, she is trying to get him into a privately-run transitional program that wants clients with higher-skill levels. Her school district has agreed to help cover those program costs until he's 21.
Like Kyle, Ryan was diagnosed relatively late with autism. He struggled with language and sensory processing problems since preschool, but he was not diagnosed with autism until 13. Like a number of boys and men with autism, he has amassed many facts about his special interest, the national highway system and train schedules.
When Ryan was 15 or 16, his mother started attending workshops about transition hosted by the developmental disability office. But, like many parents, she felt bewildered: how do you plan for a future if you don't know how independent your son or daughter will be?
"I was still thinking about college, a job and independence. You're not thinking your child will need someone to take care of him for the rest of his life," she said. She has not helped Ryan apply for state services or SSI, although those things are on her "to-do" list.
She believes college might be possible down the road, given Ryan's unusual pattern of learning in fits and starts over time. "At the age of 9, we were tearing our hair out and wondering if he would ever learn to read, and then at 10, he could read practically at grade level," she said. "At 19 he still can't do algebra but that's not to say that at 23, he won't get it."
Ryan's focus is on work after graduation. "After I graduate I would like to possibly work somewhere where I can do hands-on work and not just [be] in front of a computer all day," he said.
Alex's Story: Build Your Own Program
With my son, by 9th or 10th grade I knew he would not be in a college setting, so I asked the guidance counselor, 'what do I need to start preparing him?' I wanted him to have work-readiness skills.
Alex Korn, 21, has had a better transition experience than Kyle and Ryan. He already has been approved for a program that allows him to direct his own community-based supports and services, kind of a "build-your-own-program" using a budget supplied by the state. Those services will kick in once he graduates from a public high school in Long Island, New York, this spring.
His mother, Sheila Korn, expects his post-graduation weekly schedule will look like this: two to three days at a day program, where he will receive training in job and social skills, plus two days spent visiting businesses with a job coach from the New York Office for People with Developmental Disabilities. The goal: finding supported employment. That's the plan, and so far, she does not anticipate any waiting lists for programs.
Dr. Korn, a pediatrician, credits her son's school district with smoothing the path to transition. "We are lucky that we have a school transition coordinator who is phenomenal," she said. The coordinator has been making them aware of programs and events since her son was 14.
"With my son, by 9th or 10th grade I knew he would not be in a college setting, so I asked the guidance counselor, 'what do I need to start preparing him?' I wanted him to have work-readiness skills," she said.
Alex's school has a store on its campus that provides students with retail experience, such as operating a cash register, stocking shelves and taking inventory. He also has worked in food preparation at school, a hospital kitchen and an Appleby's restaurant, she said.
After he reached 18, he applied for SSI and Medicaid, which he receives. His family also hired a lawyer to file for guardianship of him. Mr. Korn is on a waiting list for residential services, although it's not something the family wants at the moment.
Dr. Korn, like many parents interviewed, say residential services will become more important to their adult children when parents enter their retirement years. But waiting lists are long. As of 2012, more than 110,000 people with intellectual and developmental disabilities were on waiting lists for residential services across America; all needed housing services within a year. If you include people whose housing needs are less urgent, the number on waiting lists swells to 300,000, according to the Residential Information Systems Project at University of Minnesota.8
With the seemingly never-ending budget pressures faced by states, some parents wonder, will those services be there when they're needed?
We will check back with these families in the coming year to see how these young men, and the agencies that are tasked with helping them, are doing.
- For general information on guardianship, and alternatives to it, see Guardianship by the New Jersey Department of Human Services' Division of Developmental Disabilities. For questions, please contact an attorney, legal advocacy group, or developmental disability agency in your own state or province because laws vary.
- Autistic Self Advocacy Network's Toolkit on Improving Home and Community-Based Services
- Autism Speaks Transition Tool Kit
- IAN Community's article A Place of Their Own: Residential Services for Soon to Be Adults with Autism
- IAN Community's Transition to Adulthood series.
- Urban Land Institute Arizona, Southwest Autism Research & Resource Center, & Arizona State University (2009). Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders. Resnik, D. D. (ed.)
- Goehner, A. L. (2011, April 13) A Generation of Autism, Coming of Age. New York Times. Retrieved from http://www.nytimes.com
- Autism Spectrum Disorder Data & Statistics (2015, Feb. 26) Centers for Disease Control and Prevention website. Retrieved from http://www.cdc.gov/ncbddd/autism/data.html.
- Zwyer, D. (2003) Guardianship in Ohio. Retrieved from http://ddc.ohio.gov/pub/guardianshiprevised.htm
- Official Social Security website. Retrieved from http://www.socialsecurity.gov/disabilityresearch/wi/medicaid.htm, and also from http://www.socialsecurity.gov/pubs/EN-05-10026.pdf.
- Zaharia, R & Moseley, C. (July 2008). State Strategies for Determining Eligibility and Level of Care for ICF/MR and Waiver Program Participants. Retrieved from http://www.nasddds.org/uploads/documents/NASDDDS-EligibilityReportFinal.pdf.
- Duncan, A.W. & Bishop, S.L. (2013) Understanding the gap between cognitive abilities and daily living skills in adolescents with autism spectrum disorders with average intelligence. Autism. 2013 Nov 25. View abstract.
- Larson, S., Hallas-Muchow L., Hewitt, A., Pettingell, S., Anderson, L, Moseley, C., Sowers, M., Fay, M.L., Aiken, F., Agosta, J, Kardell, Y., Smith, D. (2014) In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends Through 2012. Retrieved from https://risp.umn.edu/