HANCOCK COUNTY — When Isis Davidson was 4 years old, her family got news that would change their lives forever.
Her mother learned from doctors her daughter has autism, along with Rett Syndrome, a rare genetic neurological disorder that leads to severe impairments, affecting her ability to speak, walk, eat, and even breathe without difficulty.
Wendy Davidson of Greenfield knew then her daughter would require a much higher level of care from her family, doctors and teachers, but it would take years of struggling before Davidson would understand just how hard securing care for a child with ailments in addition to autism would be.
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Therapy and counseling options for county children with autism spectrum disorder are few and far between, advocates say; many families drive to Indianapolis to receive care and face months on wait lists. A facility dedicated to applied behavior analysis (ABA) therapy, an intensive type of therapy for children with intellectual disabilities, opened last year in Greenfield and has already met its capacity.
There aren’t enough mental health care providers in the state, according to a 2018 study by Mental Health America, which ranked Indiana 48th out of 50 for its high prevalence of mental illness and low rates of access to care.
And rural America has a severe shortage of qualified mental health professionals because agencies and governmental units are unable to pay competitive wages commonly offered in larger communities, says a new report from Ball State University presented at the Annual Society for Public Health Education Conference in April.
Because Indiana doesn’t entice recently graduated mental health professionals over states like California and Texas, people with mental illness in Indiana end up underserved and marginalized, said Jagdish Khubchandani, coauthor of the report. He said the problem must be addressed at the highest levels of state government, in addition to state universities and agencies working to acquire federal funding to make an impact.
“We have to be finding funding and resources,” Khubchandani said. “We are officially underserved.”
Securing mental health resources is even more challenging for children with autism who also have behavioral health issues like depression or anxiety, said Cathy Pratt, director of the Indiana Resource Center for Autism. Some 80 to 90 percent of children with autism also deal with a mental health issue, mostly anxiety, she said.
“Finding a psychiatrist who understands both the interaction of mental health and autism can be very difficult,” she said.
In the last year, facilities offering services specifically to children and young adults with autism have started popping up. Greenfield now boasts two such agencies: Applied Therapy and Behavior Services, which opened its doors in Greenfield in mid-2017, and the Autism Center for Enrichment, 1459 N. State St., which expanded to Greenfield recently.
But space is limited and expensive, leaving families like the Davidsons without few options. Isis now receives therapy at home.
Rachel Deaton, Autism Society of Indiana ally for eastern Indiana, works to find services for people with autism in 16 counties; those services include doctors, dentists, therapists and respite care. It is particularly difficult to find mental health services for people with autism, she said.
“A lot of providers don’t want to see individuals with autism, because they have a low success rate,” she said. “It takes a lot longer to treat an individual with autism who also has depression or anxiety. A lot of doctors can choose not to serve those individuals.”
Deaton said finding doctors to treat children and teens with autism in central and east central Indiana is a challenge, especially for those in rural communities, because services tend to be centered in bigger metropolitan areas. Her son has autism, and living in Pendleton, services they need are typically offered only in Indianapolis, Muncie or Anderson, she said.
“Doctors want success rates, and if you have an individual with autism, success is measured differently,” she said. “There are a lot of behaviors associated with autism.”
Isis, for example, has outbursts of strong emotion that often don’t have a clear cause, Davidson said. They can be caused by something in her environment, something disrupting her daily routine.
It can be hard to tell.
Davidson suspects her daughter was abused, which could compound the problems she faces; when she was 7 years old, the girl’s father was convicted of child sexual abuse. However, her disabilities prevent her from being able to communicate about her trauma, Davidson said.
She lacks the ability to express her emotions, ask for help or ask questions, she said.
Isis had already been in ABA therapy on the north side of Indianapolis and, after insurance stopped paying for that, a special preschool for children with developmental disabilities for three years when Davidson realized her daughter might have been victimized, she said.
“I was stuck on what to do,” she said. “Nobody in town would help. They said it’s too difficult, or they wouldn’t take Medicaid.”
It’s not an uncommon story to hear from parents of children with disabilities, said Kyle Quinn, owner of Applied Therapy and Behavior Services.
The facility in Greenfield can serve about 20 to 25 children daily, but the center has a wait list about 10 deep while leaders work to hire more counselors, Quinn said.
Children and teens with autism often also battle depression and anxiety, a statewide study shows.
The most prevalent mental disorder among Indiana adolescents is depression, with 29.3 percent of Indiana students reporting feeling sad or hopeless to the point that they stopped doing some usual activities almost every day for two or more weeks in a row, according to the Kids Count in Indiana 2017 Data Book, statistics compiled by the Indiana Youth Institute.
Kids with autism often struggle with anxiety and depression as well, Deaton said. For example, students with autism often stay in school a few years longer than typical students, finishing high school at age 21 or 22, she said. When they graduate, they lose the friends they’ve learned alongside for years — and many of the services provided to those individuals end as well, she said.
For children who don’t thrive in a school setting, ABA therapy, which provides intensive one-on-one interaction between clients and therapists, is another option, Quinn said.
The goal of ABA therapy is to transfer the child back to school or another, less restrictive, environment, Quinn said.
“When they come here, they may not be ready for school to be successful,” he said. “The point is always to transition out of these services back to school.”
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Finding the needed services for children with autism can be challenging enough, but the insurance system for those services adds another layer of complexity, said Autism Society of Indiana ally Rachel Deaton.
The Medicaid Family Supports Waiver for Indiana families, offered through the Indiana Family Social Services Administration, serves people with developmental disabilities, intellectual disabilities or autism who have substantial functional limitations, according to the Indiana FSSA website. An individualized support plan is developed to help the person live in the community setting appropriate to their needs, whether they live independently or in their family home, according to the website; the waiver’s services are an alternative to placing the individual in a group home facility.
The waiver provides access to home- and community-based services and supports with an annual cap of $17,300, according to the FSSA website.
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