KALAMAZOO, MI — In April 2012, Jessica and Allan Macaulay and their three children moved to Portage from Michigan’s Upper Peninsula when their son, John Anthony, became the first resident of the Great Lakes Center for Autism Treatment and Research.
The center now treats 12 children and is at full capacity in the intensive treatment program.
Another son, Joel, is enrolled in a school program for children whose autism is not as severe, she said.
And a friend of the Macaulays followed in their footsteps, also moving from the Upper Peninsula to an apartment with her son with autism so that he could benefit from services offered by Kalamazoo Regional Educational Service Agency at the Parchment School District.
They are part of a movement of parents who have come to the Kalamazoo area from other cities and states to have access to services they may not find elsewhere, said Richard Malott.
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Malott, a professor of psychology at Western Michigan University, is part of the reason Kalamazoo County has become a magnet for families faced with the challenges of autism.
“Someone once said we are the Vatican of autism” therapy, he quipped.
Malott’s WMU students work one-on-one with children with autism, providing intensive behavioral therapy for up to 40 hours a week, he said, as part of their own training to become behavioral therapists.
“This isn’t an hour-a-week thing,” he said.
The therapy WMU students provide “is not a miracle cure in any sense,” Malott said. “But the earlier the intervention, the more hours per week of high quality help we provide, the greater the impact, so that all kids and families benefit.”
Many students who receive that help reach adulthood with few symptoms of Autism Spectrum Disorder.
Scott Schrum, chief executive for the Great Lakes Center that John Anthony attended, said that with 30 hours a week of early intensive behavioral intervention, half of the children with a diagnosis of autism can live a life as though they don’t have autism, and another 40 percent can make significant improvements.
“It’s not magic, but the kids come in at 2, 3 or 4 (years old) and they have no language, it’s all squeals and tantrums, or they may just sit and flap their hands,” Malott said. “We have pretty good luck in helping them acquire a little or a lot of language,” or learn to play with other children.
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Malott’s students work with children in Kalamazoo County public schools; he also was a founder of the Kalamazoo Autism Center, a program that brings the same intensive behavioral intervention for autistic children who need more than the half day of work the free school programs provide.
When he began working with KRESA, Malott said, neither he nor his students had any particular experience with students with autism.
“Now we have a lot of experience,” he said, and the program has grown to help about 60 preschoolers, with eight graduate students and 30-40 undergraduates doing the one-on-one work. The level of expertise now is very impressive,” Malott said. “The quality is amazing.”
The need continues to grow.
Laurie Montgomery, assistant superintendent of special education for KRESA, said that in the 2012-2013 school year, 9.7 percent of KRESA special education students — 429 children — were identified with ASD, up from 7.6 percent in 2007-2008, 8.56 percent in 2008-2009, and 9.3 percent in 2011-2012. The state average for 2012-2013 was 7.9 percent.
Statewide, the Michigan Department of Education shows that in 1990, 1,203 children from birth to age 26 identified with Autism Spectrum Disorder were receiving special education services; by January, 2011, 15,976 ASD children were receiving services.
Whatever their ages or degree of disability, from preschool through adulthood, it seems Kalamazoo County has programs to help.
Even people with autism who have grown out of services provided by schools and treatment centers may find help at programs such as AACORN Farm — Autism Agricultural Community Option for Residential Needs, a 2-acre farming operation in Kalamazoo worked by adults with autism.
Stephanie Peterson, chairwoman of the department of psychology at Western Michigan University, praised the quality of Malott’s work in the classroom for children with autism at WoodsEdge Learning Center in Portage (and Croyden Ave School before that).
That level of quality led to a recent allocation of $4 million from the state of Michigan for use in WMU’s work related to autism spectrum disorder, funding that will help train more therapists and expand access to services, Malott said.
“That need is going to explode over next few years” because of an increased availability of health insurance, he said. Many policies require that therapy be supervised by a board certified behavioral analyst, and WMU stands ready to provide them.
“We are really fortunate in Southwest Michigan that our psychology department at WMU is one of the premier programs in the U.S. and internationally for behavioral analysis,” Peterson said.
Still, even here, with a wealth of options, managing their children’s needs is often a full time undertaking for families.
John Anthony graduated from the residential treatment program while his family’s insurance policy still covered treatment, Macaulay said. But her husband has a new job now, and the current policy does not cover the extensive therapy she would love for John Anthony to receive.
He does qualify for in-home help through Kalamazoo County Community Mental Health, Macaulay said, but because the county does not contract with an agency to provide such help it is up to parents to advertise, hire and manage paperwork.
Also, Medicaid only pays for intensive therapy through age 6. Joel Macauley is 8, so he does not receive the social behavioral therapy that could help him, she said.
To help families like the Macauleys manage resources, WMU has teamed up with the Autism Alliance of Michigan and will use a $500,000 grant from the state to develop a navigator project to guide parents through “the quagmire of things that need to happen,” Peterson said. Advice could include how to find a doctor, how to assess research information they read online, how to work with insurance companies.
“I think it would be amazing, and could help a lot of parents,” Macauley said. When her son was younger “I called, and called, and called,” she said, seeking advice and information. “I was really lucky to be put in touch with the right people.”
Still, she said, “it took a lot of work to get here, too. We changed our whole lifestyle, sold our farm, moved away from family and moved to a strange city.
“It’s been a sacrifice, but I would do it again in a minute.”
Contact Rosemary Parker at rparker3@ mlive.com.