Shoved off the ‘service cliff.’ New program offers hope for autistic adults, their families
Kim McLeod should be excited. Her son, Tyler, will turn 21 later this year.
McLeod should be looking forward to the freedom her son will enjoy as an adult. She should be eager for the freedom she’ll feel as a parent as her son reaches independence.
Instead, as Tyler’s birthday approaches, McLeod is “really frightened,” she says.
That’s because Tyler was diagnosed with autism around the time he was 2 years old. Unlike other kids his age, Tyler never talked. He is nonverbal, on the end of the autism disorder spectrum requiring the most support. Caring for him has required a team of dedicated professionals, not just to help him socialize and learn to cope with the condition but to help his family adjust to his needs.
In October, when Tyler celebrates his 21st birthday, many of the services his family has come to rely on will all but vanish. He’ll essentially age out of a system that Dr. Gary Stobbe, M.D., a neurologist and director of the Adult Autism Clinic at the University of Washington Medical Center, says has gotten better at treating autistic kids but is “still playing catchup” when it comes to serving adults.
Soon, Tyler will be pushed off what Patricia Matestic, a licensed clinical psychologist and director of the UW Autism Center in Tacoma, refers to as the “service cliff.”
In Washington, Stobbe describes the situation as a crisis. He cites an over-reliance of services offered through public schools, a coverage cut-off age of 18 or 21 for those on state insurance, and a general lack of qualified providers serving adults with autism and intellectual disabilities.
Now, it’s a problem UW Tacoma, with the help of a $1 million donation from the Simon Family Foundation, is hoping to do something about.
Officially unveiled this week, the goal, according to Leslie Kinkade, the associate vice chancellor for advancement at UW Tacoma, is fill the service gaps for autistic adults and intellectual disabilities. U.S. Senator Patty Murray was on hand for the announcement.
Kinkade says the new program at UW Tacoma will have three main objectives:
▪ Increasing the number of students in the school’s Master of Social Work program prepared to serve autistic adults and people with intellectual disabilities.
▪ Offering scholarships and increased support to autistic students and students with intellectual disabilities.
▪ Developing a life-long learning and skill-building program for these populations in our community.
For McCleod, the new program can’t come soon enough.
“It will be hard to celebrate, because it will make me sad,” McLeod says of Tyler’s impending birthday. “The support network, I know it will not be there, and I don’t know what the future looks like. I know deep down in my heart that we’re survivors, and we’re strong and we’ll figure things out.
“But I’m very worried.”
A crisis
There’s good reason for McLeod’s concerns.
Her son Tyler, like many with autism and intellectual disabilities, depends on services that have been provided through public schools and other providers. These services focus on important things like socialization, continued learning, one-on-one support and behavioral therapies.
According to Matestic, many families with autistic children depend on a predictable schedule and support services provided by public schools — which are often available until a child’s 21st birthday.
Adding to the fear and uncertainty, many programs covered by state health insurance plans and many private plans — including applied behavioral analysis therapy — often expire at the same time.
“All of those things are lost when you’re done with school, and you may or may not get them on your state or individual insurance,” Matestic says. “All of a sudden parents are trying to piece together some sort of schedule. They still need it, but it’s not covered anymore. (Autism’s) something the person will have throughout their life. It doesn’t stop.”
Before some of these services, McLeod remembers the difficulty her family had caring for Tyler — especially as he reached late elementary school and middle school. She recalls the isolation, the outbursts, the biting and the running into traffic. She remembers the need to make her home “a fortress” because Tyler was “incredibly fast and agile” as well as a “runner and climber.”
“As a family, you just can’t do it alone. I gave it my all. I have a college education. We had the resources to be able to have me devote my life to it, and I just couldn’t save it. I couldn’t save him,” McLeod says
Access to services and programs helped.
“It’s been life changing,” she says. “Now we can travel with him and do other things that I never thought we could, because of the support we have.”
When available services dry up, the impacts are noticeable, Stobbe says. Regressions occur, which is particularly frustrating since studies have shown that autistic adults continue to make significant strides well into adulthood with proper support.
There’s also an increased risk and prevalence of co-occurring behavioral health disorders, like anxiety and depression, as well as declining physical health, Stobbe says. He points to studies showing that, for autistic adults, the rate of suicide is five to ten times higher than control groups matched for age and other variables.
Meanwhile, the employment rate for autistic adults and those with intellectual disabilities is “extremely low,” Stobbe says.
“So many individuals need a lot of one-on-one support. They need places to go, they need friends, and when school kind of ends, were seeing a big drop off of this. Individuals who are making progress in their teen years, we see them kind of sliding backwards in their 20s,” Stobbe says. “When we do it right, we can save lives.
“But we’re not doing it right.”
Creating a ‘national model’
Throughout the 1990s, diagnoses for what’s now known as autism spectrum disorder dramatically increased. Today, according to estimates from the Centers for Disease Control and Prevention, the disorder affects roughly 1 in 59 children. Other recent studies have suggested an even higher prevalence.
It’s with all this in mind that Stobbe describes the lack of resources and qualified care providers serving autistic adults and those with intellectual diseases as “a crisis.”
Kids diagnosed in the 1990s are reaching adulthood now and have too few places to turn for help.
It’s something the Simon Family Foundation was well aware of, and one of the reasons the philanthropic foundation was eager to put $1 million toward UW Tacoma’s new program.
According to Kinkade, the school aims to double the endowment and eventually secure $5 million in funding. She hopes the program UW Tacoma is launching will one day serve as a “national model.”
By offering scholarships and support to autistic adults and those with intellectual disabilities, UW Tacoma hopes to provide an environment for success for these students. This will improve employment prospects, Kinkade says, while UW Tacoma will benefit from the “wonderful ideas, thoughts and perspective” students bring to the school as it builds the new program.
“This recognizes the amazing potential of these individuals to earn a degree, to graduate and to pursue careers in any field you might imagine,” Kinkade says.
Meridith Hatch, who earned an undergraduate degree from UW Tacoma in 2010 and an MBA from the Milgard School of Business in 2015, has little doubt that such a program would have helped her. Today, Hatch is a digital marketing product manager at Sound Credit Union.
Diagnosed with autism spectrum disorder during the course of earning her MBA, Hatch, who describes herself as high-functioning, says she struggles with things like organization, prioritizing and planning.
In college, Hatch says, group work was particularly challenging. So was organizing her time. The MBA program, she says, typically called for students to take about eight credits a quarter.
One quarter, Hatch ended up taking 17 credits worth of work
There were few places for Hatch to turn for help.
“I went into the disability services offices and asked them if it would be possible to get a coach or someone to check in with weekly, so I could share with them and they could help me thinking out loud about how I was going to get the work accomplished,” Hatch says. “Having someone to check in would have been all I needed.”
The new program also will focus on developing a series of workshops and courses designed for adults with autism and intellectual disabilities who aren’t seeking degrees.
Kinkade anticipates a focus on social and emotional skills as well as career advancement and general quality of life. While specifics have yet to be finalized, Kinkade mentioned possibilities like classes on nutrition, hygiene, gardening and cultural learning.
Perhaps most importantly, the UW Tacoma is specifically focusing on increasing the number of qualified providers coming out of the school’s Master of Social Work program. In addition to boosting the ranks of professionals trained to serve autistic adults and adults with intellectual disabilities, the school hopes to spark innovation in the way we care for these populations.
Given the current dearth of these qualified professionals and services, there’s little question about the impact this stands to make.
“We’re never going to have enough specialists. This is a problem that really does need the village to address it, and the community as a whole,” Stobbe says.
“I think it can make a huge difference,” Stobbe adds. “(The Simon Family Foundation) was very smart in their investment. I think it’s going to be a real boost for the South Sound community.”
McLeod agrees.
“This sounds like a recognition of this big segment of kids who aren’t done when they turn 21. In fact a lot of them are just getting started,” she says. “It provides a sparkle of hope. I’m out of my mind with joy that something can come from this.
“Because it has to. I mean, it really has to.”
This story was originally published March 22, 2019 at 8:11 PM.