Services in rural areas and support for adults on the autism spectrum lag behind
Dennis Mashue traveled around the country with his son, who is on the autism spectrum, before finding the supportive community he was looking for in Colorado. After deciding to relocate from Michigan to Colorado, Mashue, who now serves on the board of Autism Society of Colorado in Broomfield, said in his experience, people in Colorado are very understanding and accepting of neurodivergent people.
The Mashues are one of many families seeking care for children on the autism spectrum who have moved to Colorado from out of state in the last 10 years, said Sharon Starkey, the co-founder and president of Autism Vision of Colorado, a nonprofit that helps connect families with services. There are people who have moved to Colorado from Texas, Kansas, Nebraska, Arizona, North Carolina and Georgia, and recently, she has noticed a lot of people coming from California, Starkey said.
It’s a trend Starkey attributes to stricter insurance mandates and many waivers available through Colorado’s Medicaid programs, which can provide funding for services to families who qualify for them.
“No state is the end all be all for autism therapy and support,” Lea Anne Paskvalich, the executive director of the Autism Society of Colorado, wrote in an email to Newsline. “Still, Colorado does have an insurance mandate requiring insurers to cover autism treatment at a higher level than many other states.”GET THE MORNING HEADLINES DELIVERED TO YOUR INBOX
Kimberlee Carter’s son, Spencer, was diagnosed with autism in 2020, and getting a diagnosis during the COVID-19 pandemic was very difficult, Carter said. Most of the appointments were virtual and there were a lot of delays.
After having a meeting to determine whether her son should attend their school district’s pre-K, Carter decided to send her son to a private preschool that only serves autistic children, where he has his own caseworker, therapist and aide, Carter said.
Spencer is on Carter’s husband’s insurance through work, as well as her own insurance, so they don’t have to pay for Spencer’s services out-of-pocket, Carter said. Earlier this year, the work changed their insurance plan without telling Carter’s husband, and while nothing changed as far as what was covered, the insurance needed a new treatment plan in order to cover the services Spencer receives at school.
Had Carter not had her insurance for the services to fall back on as a secondary, they would have had to pay $22,000 out-of-pocket for 10 weeks of services. Spencer could be going to a public school, but there was one aide for 15 children in the class and Carter and her husband decided they wanted to send Spencer to a more focused environment at first, to try and get him as many tools as he needs before he goes to a mainstream school, Carter said.
People in Colorado seem to want to learn about autism and have been very accepting of Spencer, Carter said. When they traveled to another state, some people gave them a hard time about Spencer not being able to wear a mask, but they haven’t had any problems in Colorado, Carter said.
Colorado ranks as the most supportive state for raising a child with autism, according to Autism Parenting Magazine, a U.K.-based magazine written by professionals and parents of autistic children. The authors analyzed which states were best for diagnosis, therapy, health, education, recreation and support. Colorado has 5 specialist schools, 17 applied behavior analysis providers, and ranks 4th for insurance coverage, according to the article, which was published last month.
The Centers for Disease Control and Prevention reported last year that 1 in 44 children in the United States is diagnosed with an autism spectrum disorder, according to 2018 data. Boys are four times more likely to be diagnosed with autism than girls are.
The most important considerations for a person with autism are the existence and availability of resources to meet their needs at every stage of their life, Paskvalich wrote: “An autistic child will grow up to be an autistic adult.”
Families who need additional assistance can find it through through Colorado’s Medicaid waivers, specifically the Children’s Extensive Support, Developmental Disabilities and Supported Living Services waivers, which support autistic children and adults who qualify.
The Developmental Disabilities waiver can provide access to full time supervision for people 18 and over who live in group home settings, in their own home or with family members, according to the Colorado Department of Health Care Policy and Financing’s website.
The Supported Living Services waiver provides support for adults with intellectual or developmental disabilities so that they can remain in their home and community.
Half of the funding for these waivers come from the state and the other half comes from the federal government, said Bonnie Silva, the director of the Office of Community Living within the Colorado Department of Health Care Policy and Financing.
Recently, the state House of Representative passed a bill to improve higher education for students with disabilities, and a state Senate Committee passed a bill that would increase funding for special education.
‘Flooded with resources’
Colorado is tied for the state with the third greatest number of autism resources for its population, according to researchers at Stanford University.
“A lot of people also move here because the Colorado Springs and Denver area are flooded with all different kinds of resources, especially for autism,” Starkey said. “So you have your developmental pediatricians, you have tons of ABA services, speech-language, occupational therapy, physical therapy, neurofeedback, hippotherapy, just all kinds of services that aren’t available in a lot of other places.”
Hippotherapy is physical, occupational and speech-language work that is done on horseback by licensed therapists, including speech pathologists and occupational or physical therapists, said Jay Muller, president of the Grand Valley Equine Assisted Learning Center, which he co-founded with his wife. The center, which is located in Fruita, in western Mesa County, works with children and adults.
For the most part, however, services in Colorado are not evenly distributed, with Denver, Boulder and Colorado Springs boasting more resources available for people on the autism spectrum, and many rural areas lacking the same options. People moving from out of state mainly settle along the Front Range — if they can afford it, Starkey said.
“Rural Colorado and our mountain towns have very few resources for autism services and support,” Paskvalich wrote. When out-of-state families considering a move contact the Autism Society of Colorado, the organization will encourage them to consider moving to the Front Range. While there may be waitlists for evaluations and therapy, the Front Range has a vast number of therapy and service providers who can meet the needs of the autism community, Paskvalich wrote.
Muller said that he wouldn’t say there is a lack of services available, but maybe a lack of understanding of services.
“There’s definitely a lack of cohesiveness of services in rural settings,” Muller said. The center gets a number of clients from the Denver areas, who tell them that the services in those areas are a lot more connected and work better together.
“Obviously, our services and offerings are getting better, but it’s the cohesiveness between those services and connectivity to those services that we’re trying to improve,” Muller said.
Lack of services for adults
While Colorado offers many services for children on the autism spectrum, there is a lack of services available for adults, which many say is a problem across the country.
“We really need help trying to find services for kids who have aged out of kid services — I mean there’s just nothing,” said Tracy Bules, who has two deaf sons with autism. “There’s literally nothing for my kid, now that he’s 21. There’s just nothing.”
There’s literally nothing for my kid, now that he’s 21. There’s just nothing.
– Tracy Bules, mother of two sons who have autism and are deaf
“There are so many kids with autism, so many, and they all grow up, and then there’s just nothing for them,” said, who lived in Ohio prior to moving to Colorado with her family. Her son attended therapy at a center during the day until he was 18, but then he aged out. He has a therapist who comes to their house everyday, but besides that, there is nothing that is really appropriate for him, like a day program or group activity, because of how severe his autism is and because he is deaf, Bules said.
One of the scarier things for parents who are moving to a different state is that they have to give up services in one state without a guarantee that they will get services in the state they move to, Bules said.
“There really aren’t a whole lot of services available for adults, unfortunately, and that’s across the board, across the United States, and that includes here as well,” Starkey said. “It’s kind of like, you turn 18, and then I don’t know what you are supposed to do, because there’s not anything out there.”SUPPORT NEWS YOU TRUST.
Our stories may be republished online or in print under Creative Commons license CC BY-NC-ND 4.0. We ask that you edit only for style or to shorten, provide proper attribution and link to our web site. Please see our republishing guidelines for use of photos and graphics.