MURRAY — Federally mandated services for those with autism end at the age 21 or 22, something that can place an extra burden on parents and limit opportunities for a person with autism.
But the Adult Autism Center of Lifetime Learning, scheduled to open in July 2020, aims to address the gap in support services for adults with severe autism. The project is estimated to cost about $6 million and construction is scheduled to begin this summer.
"I think the most touching part for me is hearing from the families the lack of services that are out there for this group of individuals with autism," said Julia Hood, chief clinical officer with Valley Behavioral Health. "And the hole that this will fill for so many families in Salt Lake."
Carmen B. Pingree Autism Center of Learning partnered with Valley Behavioral Health to create the center, which will offer vocational and educational training in different areas such as culinary, agriculture, home living, social and leisure, barber, medical and dental visits.
Officials broke ground Monday for the new building, just one day after "Autism After 21 Day," which was designated as an official day by the 2017 Utah State Legislature to call attention to the lack of services provided for adults with autism.
To comply with the controversial and complex federally mandated "Settings Rule," which prohibits segregated work environments, the center will not offer in-house employment options but will instead provide vocational training and help clients find jobs in the community.
"It's really a labor of love for all of us that are involved," said Gary Larcenaire, CEO and president of Valley Behavioral Health. "It takes a tremendous amount of passion."
The project is a "beta site" with hopes to expand depending how the center performs, Larcenaire noted.
"Right now in the community, there are minimal services for adults with autism in general, let alone this subset of the population that has a really high level of need," Hood explained. "And so we are filling a gap in services that currently is not being met."
While other programs do exist in Utah for adults with autism, Larcenaire said none suit the needs of individuals with severe and complex behavioral issues.
"It's really sad for these kids because they have so much potential," said Stan Beagley, chairman of the Carmen B. Pingree Autism Foundation Board.
Beagley's 21-year-old son Jake is on the autism spectrum, and Beagley said he's happy his son will have a place to go now that he's approaching the age where services drop off. He said services currently available to adults with autism don’t offer the extensive care the new center will.
"I've visited those centers and it's the best that they can do, I guess, but they watch videos and they sit around and they don't do anything that's stimulating to them and they don't progress," he said.
Cheryl Smith's son Carson, 20, has what his mother calls "autism plus."
He is on the autism spectrum and can exhibit more severe behavioral issues.
Rather than saying this group has "low-functioning autism," Smith coined the term "autism plus" to refer to those with more severe symptoms of autism.
"Our goal is to keep working on (behavioral issues) and get them vocational skills and to get them out into the community," said Smith, who's also a founding member of the Autism Council of Utah and serves on the board of Valley Behavioral Health and the Pingree Autism Center of Learning. "We'll never stop trying to get them a quality of life that they deserve."
The center, which can house up to 100 individuals, is aimed at helping this population, Smith said.
"These are the adults that are not going to live independently, they are not going to have full-time employment," Smith said. "They're the ones with significant challenges and traditionally they get baby-sat."
But in the new program, care will be individualized and focused on development according to Hood.
"Everything will be completely individualized for our clients in ensuring they're getting different opportunities that really play on their interests, their skill set, things that they want to do and are able to do," she explained, noting the center's curriculum is based on applied behavioral analysis and evidence-based programs. "And also work toward the least amount of support as possible. So we want them to be independent.
The property, located at 6230 S. 900 East, is across the street from Wheeler Historic Farm, and officials said they hope the center can partner with the farm to offer jobs and volunteer work. For those interested in applying to the center, a referral form is on carmenbpingree.com.
Employees at the Olympus Burger, which is near the new center's grounds and is Carson Smith's favorite place to eat, know Carson very well — so much so that when a Pingree staff member assisting Carson one day placed an order for him, workers knew that wasn't his order.
"And that's what I hope happens in the whole community — that they know our kids, our adults, and that they're kind to them and embrace them in their community," Smith said.
For many parents, including Smith, worrying about their child's future starts from birth. For parents of those with disabilities, the anxiety can be more intense, she said.
"I know I'm going to die and he's going to be here," Smith said. "I have to set up his world for him to be successful."