Nickolas Kubicsko and his family were about to take their first family vacation in seven years.
There was no question where they’d go: The Happiest Place on Earth. Twenty years old at the time, two years ago, Nick had been obsessed with Disney movies since he was a little guy.
“He very much liked his videos to the point where there was a while he would go back and forth to school with the duffel bag with 150 to 200 videos. He would get these impulses and needs to (think) ‘I have to take this to school with me,’” said his mother Lenore Kubicsko said.
Nick has Autism Spectrum Disorder and for years when he was a teenager it just wasn’t possible to take him to Disney.
On the spectrum of autism, Nick’s symptoms are more severe. He communicates through a computer device that generates speech and struggles with social interactions. He needs supervision and learns best in a one-on-one environment.
But now here they were — on the Dumbo ride in Fantasyland. Nick had a spark in his eyes. His mom and sister grinned from ear to ear.
They were able to make the trip because Lenore had found a new way to help Nick after he’d gone through a period of destructive behavior. His local school district on New York’s Long Island was paying for aides and tutors who would work with Nick in the home.
Problem was — all of that was about to be taken away. Nick was nearing his 21st birthday.
Federal law guarantees an education for children with developmental disabilities like autism until the age of 21. But after turning 21 (each state determines the exact date), those young adults lose the specialized help and structure they’ve had for most of their lives. And there is no equivalent state or federal support required to take over.
Parents of children with autism compare it to falling off a cliff.
“Happy graduation,” Lenore Kubiscko said with sarcasm in her voice. “Everything that we’ve worked for we are taking away and you will leap off a cliff into nothingness. Right now the picture is nothingness, it’s black. Absolutely black.”
Mary Clancy was feeling the same way. Her son Eric was about to turn 21 too and graduate from a specialized school for children with disabilities called the Rebecca School — a place he loved and thought of as his family away from home. After a legal battle, the Clancy’s won the right to have their local school district reimburse them for tuition, which averaged about $100,000 per year. But that would stop at graduation.
“Without purposeful things to do, he will fall back into the autism world. Into his own inner world,” Mary said. “He’s so much happier out of it. But that’s where his brain takes him. It’s hard.”
For three years, Dateline followed these two families as their sons graduated from the education system and moved into uncertain terrain.
We watched as these mothers navigated bureaucracies, made phone calls for hours on end and got on waiting lists that were filled with thousands of names already.
As adults, their sons are eligible for Social Security and they can apply for services funded by Medicaid. But they were warned by parents and other advocates that many of the programs offered would not be tailored to autism. And even for programs that they didn’t think were ideal, there are waiting lists. Every state decides how to spend its Medicaid dollars and so there are great variations from state to state. In Florida for example, there are waiting lists that contain as many as 20,000 people.
Autism prevalence rates have more than doubled over the last decade. And according to Linda Walder, Executive Director of the Daniel Jordan Fiddle Foundation, an advocacy group for adults with autism, an estimated half a million young people with autism will age out in the next ten years.
“It’s a tsunami of children who are aging to adult life,” Walder said. “And we really have no safety net for them, or very few safety nets.”
Walder emphasized that people don’t stop having autism when they turn 21. “That is one of the general misconceptions about autism — is that it only affects children,” she said. “You do not outgrow autism.”
In 2012, the US Government Accountability Office issued a report that found students with disabilities face longstanding challenges in accessing services as they “transition” to adulthood. The report cited a lack of sufficient information or awareness of the full range of service options, long waiting lists and a lack of clarity over which government agencies are responsible for helping young people.
“Although federal agencies are engaged in some coordination efforts,” the report found, “these efforts represent a patchwork approach… there is no single, formal, government-wide strategy for coordinating transition services.”
After a recommendation from the GAO, the federal government issued a new “Federal Interagency Strategy” in February of this year.
“I think we have a lot of work to do,” said Sharon Lewis, Principal Deputy Administrator of the Administration for Community Living at the Department of Health and Human Services and the Senior Disability Policy Advisor to the HHS Secretary.
“I think what’s important to recognize is that when we talk about youth and young adults with autism, we’re talking about a really broad range of people. When the CDC estimates that 1 in 68 8-year-olds in this country have an autism spectrum diagnosis, we’re talking about kids, some of them who are going the earn PhDs at Harvard, and some of them who are going to need 24/7 supports for the rest of their lives.”
Lewis said she understands the frustrations of families of children with autism and agreed that it’s unfair how much stress is put on parents. She said it’s unfortunate that too often the time students spend in the education system isn’t helping prepare them for the future.
“We have a long way to go,” Lewis said. “We know that students with disabilities don’t graduate at the same rates as their peers. They don’t necessarily exit with the same sets of skills. And we have to really use our education system to insure that students have the opportunities to be contributing citizens regardless of the severity of their disability.”
“We have not addressed the need for long-term service and support in this country,” Lewis said. “There have been multiple efforts at multiple levels, in the Congress, in the Administration, to come up with a long-term care financing structure. And there has not been political agreement.”
Lenore Kubiscko and Mary Clancy hope that by adding their voices to the discussion, others will feel empowered to speak up.
“There needs to be a real mobilization,” Clancy said. “A real movement of people. Not just to demand services but to demand a change in the way autism is viewed … It’s not a frightening, dangerous thing … They are very gifted people who want a life, just like everybody else.”
This story was originally published on NBCNews.com