Quilt of services: Northwest Colorado offers a patchwork of programs to help individuals with autism
September 8, 2013
The national annual growth rate for autism spectrum disorders is 10 to 17 percent. It's the fastest-growing developmental disability, and there is no known cause of autism. The effects on individuals vary greatly, but every child with an autism spectrum disorder that the Yampa Valley Autism Program sees has challenges with social and communication skills, according to Lu Etta Loeber, the program's executive director.
Loeber said the growth of autism and its related disabilities in the region has outpaced the national rate, with the number of cases jumping from 55 in 2011 to 68 in 2012.
The Centers for Disease Control and Prevention states that one in 88 children have been diagnosed with an autism spectrum disorder, and some parent surveys indicate the rate could be even higher.
Some of the increase in children diagnosed with autism spectrum disorders might be attributable to strides made in early identification and the broadening of the medical definition, but research can't rule out a true increase in the number of children with the disorder.
The Yampa Valley Autism Program serves more than just children with autism spectrum disorders and is part of a greater quilt of services in Northwest Colorado that serve families with children who have developmental disorders.
"One agency can't provide everything," Loeber said.
The Yampa Valley Autism Program works with the Pediatric Therapy Group at Yampa Valley Medical Center; the Northwest Colorado Board of Cooperative Educational Services, which provides special education services in the Steamboat Springs School District; and Horizons Specialized Services, which is a community-centered board designated by the state to provide services for those with developmental disabilities.
"We all know each other and communicate with one another," Loeber said.
Quilt of services
Children diagnosed with an autism spectrum disorder sometimes require multiple types of services spread throughout school and home environments and extending through vocational therapy as they grow older. But every child is unique, and the support required is tailored from the earliest identification of the disorder.
Loeber said the initial assessment can take place in a medical setting with a doctor or in an educational setting with teachers who have been trained to look for signs of a disorder.
"Once the initial assessment (has taken place), we try to figure out who can best help this child," Loeber said.
"Social cognition is the core of our program," she said about Yampa Valley Autism Program. Regardless of the severity of the child's disorder, she said, all of the children the program serves need social cognition therapy for social and communication skills.
The program also is helping to pay tuition for two people to get certified in applied behavior analysis behavioral therapy. Loeber calls applied behavior analysis the gold standard of behavioral therapy and said it greatly helped her own grandson, who had autism.
The Pediatric Therapy Group offers occupational, speech, language and physical therapy to children with developmental disorders, said Sally Hertzog, a speech language pathologist with the group. Hippotherapy also is available through Humble Ranch Education and Therapy Center.
"I think we all try to collaborate," Hertzog said about the services in the area. "That's the important part because that's the best way to serve the children."
Like with other services in the area, children in the Steamboat Springs School District have an individual plan tailored to their needs.
Amy Bollinger, executive director of the Northwest Colorado Board of Cooperative Educational Services, said a certified teacher acts as a case manager for a student and coordinates with a team to provide the other services, support and programming the child might need.
"We have a federal and state mandate that kids with any disabilities would be included to the full extent within a typical classroom schedule and routine," she said.
Starting with a typical classroom environment and school routine, Bollinger said, staff members determine where a child with a developmental disorder might need support and how to provide it. The individual plans are reviewed annually.
"There's not a typical child with autism," she said.
Bollinger wrote in an email that there was a change in the eligibility criteria that might account for the slight increase of children diagnosed with an autism spectrum disorder from 2011 to 2012. There has not been a significant change in the number of students with autism spectrum disorders going into 2013, she wrote.
There also are differences between the medical diagnosis and the school's eligibility for special education services for the disability area of autism, she wrote. "The school's criteria is based on the degree of interference the student is experiencing in making a typical range of progress educationally."
Bollinger also noted that the definition of autism spectrum disorder remains in flux. The most recent version of the Diagnostic and Statistical Manual for Mental Disorders changes some criteria for autism spectrum disorders, but there also are other classification systems used to diagnose autism.
The definition the state uses for developmental disorders changed Aug. 1, and Horizons Specialized Services Executive Director Suzan Mizen said it has made it easier for individuals to qualify for services.
Before the change, she said, individuals must have shown significant deficits in cognitive and adaptive skills. Now, the definition requires deficits be shown in only one area instead of both.
"We're trying to get the word out to families in our area," Mizen said. "Kids who didn't qualify before might now."
Mizen said adult services through Horizons have waiting lists, so a change in the definition doesn't automatically translate into help for families, but they can get on the waiting list.
As the state-designated, community-centered board for the area, Horizons is the single entry point for developmental disability services from the state. Mizen said the organization receives medical funds and money from the state general fund. For state-provided services, she said, individuals must apply to Horizons, but waiting lists remain.
The Yampa Valley Autism Program has a waiting list for social cognition therapy and supports about 60 children in Northwest Colorado across all of its programs.
The Yampa Valley Autism Program depends on private donors, grant writing and fundraising, Loeber said. The group's annual Mardi Gras Masquerade Ball fundraiser, held during Mardi Gras season each year, has become a popular event, she said, and benefits the multiple ways the program benefits families.
"We're a small agency," Loeber said. "We need the help of the entire community."
In addition to therapy and vocational support, the Yampa Valley Autism Program also is a resource for families who are under pressure from the financial commitment that comes along with having a child with a developmental disorder or an autism spectrum disorder.
The financial pressure is considerable, Loeber said, but she wouldn't call it a burden.
"We all found a way to provide it," she said. "It takes everything they've got to provide the necessary therapies."
And while therapy like applied behavior analysis is covered by most insurance, not all insurance plans are alike and not all the services that a child needs necessarily are covered. Other families might not have the benefit of insurance at all.
"If there's a crisis, we will react to it with family support," Loeber said. "If they have a high deductible, we will help with copays."
The program will help with emergency situations, she said, adding that support is based on need.
A child with autism often gets intense, expensive services, said Hertzog, of the Pediatric Therapy Group. "You're looking at years of therapy typically for a child with autism."
"It's always a struggle," she said. "You're looking at a big issue for families."
The Yampa Valley Autism Program provides some scholarships so children can receive services from the Pediatric Therapy Group.
The limits of insurance and the expense involved can depend on the severity of the disorder, Hertzog said. "I think people just do the best that they can."
"I had a profoundly autistic grandson," Loeber said. "We lost him a year ago at age 16."
Henry, who lived in Colorado Springs, was nonverbal and had communication and behavioral challenges, she said.
When she moved to Steamboat, Loeber was asked to join the board of the Yampa Valley Autism Program, which just was forming. She helped get nonprofit status for the group, and then the board decided it needed an executive director.
"I said, 'Sure, I could do this a couple years,'" Loeber said. "I will start my seventh year (this year).
"We have grown from just a group of parents to a full-blown agency and service provider."
And through collaboration, the Yampa Valley Autism Program and other agencies have been able to support each other and the families they serve. The Pediatric Therapy Group works to support the Yampa Valley Autism Program's Mardi Gras Masquerade Ball. Applied behavior analysis is a joint program between the Yampa Valley Autism Program and Horizons. And Loeber and Hertzog said they talk with other agencies to collaborate with the programs they offer.
"We had children in that program since they were little, and now they're in middle school," Hertzog said about the Pediatric Therapy Group's services for those with autism spectrum disorders. She said the group has served children who did not speak and had intense behavioral problems and issues with emotional regulation, and after receiving therapy, those children have been able to improve the control of their emotions and behavior and function better overall.
"That's what we're looking for: children who function better in their environment."
To reach Michael Schrantz, call 970-871-4206, email mschrantz@SteamboatToday.com or follow him on Twitter @MLSchrantz