Accessing Care for Autism
New Medicaid age extension and progress in Michigan give parents relief.
When Victoria Sova learned at age 4 how to let others know what she wanted by pointing to pictures in a special book, her mother, Courtney Sova, was thankful to finally be able to communicate with her daughter, who has autism.
Courtney got more good news when she heard Medicaid coverage for autism therapy in Michigan will continue until age 21, a full 15 years longer than the previous age cutoff of age 6. The extended age limit took effect Jan. 1.
Victoria turned 6 in August, a few months before the extended age limit took effect in Michigan, but she was able to continue therapy with no break under a special extension. Courtney says Medicaid is the only way the family can afford therapy for Victoria.
“It gives me a lot of relief,” Courtney says. “For the first few years, I really struggled to find things that were covered (by Medicaid).”
For four years after Victoria’s diagnosis of autism, at age 18 months, Courtney did everything she could think of to get the services her child needed. Besides seeking clinical help via applied behavior analysis therapy, also known as ABA, Courtney attended sessions set up for parents of children with autism, pored through online guidelines about special needs children, and gathered tips from therapists for how to help and support an autistic child.
Courtney saw Victoria make progress through her ABA therapy at The Children’s Center in Detroit. ABA is the therapy deemed most effective for autism. It seemed to work: After the first month of treatment, Courtney’s “hyper” child could sit still for two minutes, and Victoria subsequently learned the hand motions to the song, “If You’re Happy and You Know It.”
‘You Find Your Child’
In addition to getting services for autism covered by Medicaid in Michigan, which happened in 2013, advocates have made strides on other fronts, including private insurance reform that was signed into law in 2012.
“We had none of this two to three years ago, so we’ve made progress,” says Colleen Allen, president and CEO of the Autism Alliance of Michigan.
Insurance reform, and resulting new coverage by private insurers, created additional demand for services, which led to more jobs for the professionals who treat autistic children. Allen says she has seen autism professionals who had moved elsewhere to find jobs in their field return to Michigan for new professional opportunities created after insurance reform here. Insurance changes also led Michigan universities to create new programs for training board-certified behavior analysts and related professionals.
All of Michigan’s major universities now have programs to train autism professionals. That has led to an increase in the number of certified behavior analysts, who are uniquely qualified to make an autism diagnosis in schools and who supervise in a clinical setting. The number grew from 30 statewide in 2011 to 392 today, according to the Behavior Analyst Certification Board’s website.
Some of those analysts may have been headed to nonprofit treatment centers at The Children’s Center, where Victoria used to go; the Judson Center in Royal Oak; Beaumont Children’s Hospital; the Detroit Medical Center; Henry Ford Health System; and the University of Michigan Health System, all of which offer medical diagnosis (different from school district diagnosis) and ABA therapy.
For-profit autism therapy programs, such as one created by Centria Health, a home health company in Novi, have also created jobs for analysts and therapists. The demand is so great that Centria doubled its number of board-certified behavior analysts from 20 to 40 in just a few months, says Scott Barry, CEO of Centria.
train autism professionals.
Centria’s autism professionals work with children like Zahraa “ZaZa” Kdouh, of Dearborn. ZaZa, who turned 6 last September, is also benefiting from the age extension under Medicaid, which enabled her to continue the ABA she started after her diagnosis in 2014.
Therapy helped transform ZaZa from a girl who still drank from a bottle and wore diapers at age 4, and who would bite and punch her mother, Sawsan Arbid, to one who now knows her address, behaves in the grocery store, and tolerates birthday parties even though she hates the singing.
“To see that kind of improvement is amazing,” Arbid says. “With ABA therapy, you find your child.”
Hurdles to Overcome
Even though Centria’s home health care company is growing from increased demand for autism services, the new Medicaid age extension has created an additional hurdle for its recruiters.
“A lot of people are hesitant to work with older kids,” Barry says, because of their larger size and greater strength. “A 3-year-old with behavior challenges is different than a 13-year-old.”
Older kids and young adults may also have depression and anxiety that affect their behavior, conditions not seen as widely in younger children, Barry says.
Centria’s solution has been to provide extra training and mentoring from an experienced board-certified behavior analyst to autism professionals who are interested in working with older children but don’t have the experience or the necessary skills, Barry says.
Allen, of the Autism Alliance, points out another, domino-like effect of the Medicaid expansion. Because federal guidelines prohibit putting Medicaid recipients on a waiting list, autism patients with private insurance may be waiting longer for the evaluation that would lead to a diagnosis and services.
“The backlog on diagnosis has eased, but it’s now about 500 to 1,000,” according to the providers and others she talks to in Michigan, Allen says.
Allen, who is doctorate-level trained in speech pathology, has another idea to help autistic children overall. She proposes training for teachers, speech professionals, and occupational therapists to help them pick up the skills needed to work with autism in their patients and classrooms.
“We’ve got a lot of teachers who just aren’t trained to take care of these kids,” she says.
The Emagine Theatre in Novi and Centria Health Care, a home health company with autism services that’s also in Novi, are presenting an autism-friendly movie-going experience in an understanding environment. Screenings, which charge regular-price admission, are the first and third Saturday of the month, and movies so far have included The Good Dinosaur, Kung Fu Panda 3, and Star Wars: The Force Awakens, among others.
For more information, visit autismfriendlymovies.com