Covering the cost of autism
So the Southgate, Mich., couple drained their savings to pay for therapy for their little boy, Noah, who has autism.
They downsized cars, skipped eating out, clipped coupons, gave up new clothes and a home phone. They held fund-raisers – bowling parties and spaghetti dinners. Credit card bills grew.
“It has been a very scary time for us,” said Erin, 34, a manager for the Michigan Department of Human Services. “We’re used to being financially secure. The scarier part for us would be if we could no longer get him the help he needed.”
Larry Nieman, 32, works in an information technology office for a social services agency. His wife’s father came out of retirement to help with the bills.
“It’s literally taking three incomes to make this work,” Erin Nieman said.
But for the Niemans – and thousands of other families coping with autism – life is about to get a lot easier.
Starting in October, a new law will force Michigan insurers to cover therapy for children with autism.
“The signing of this legislation changes everything,” said Judith Ursitti, liaison to state governments for New York-based advocacy group Autism Speaks.
From her office in New York, Ursitti has watched for four years as states passed laws that mandated insurance coverage for autism therapy. Before Michigan’s law – the 30th in the nation – was signed in March, the state was among the least friendly toward children with autism, she said.
The lack of insurance coverage for therapy – which can top $100 an hour – meant most families were cut off from services, relying on cash-strapped school systems and staff who often are poorly trained in working with autistic children, said Ursitti, who has a son with autism.
Additionally, it drove newly trained therapists to states with better insurance coverage for autism, leaving few therapists even for the families who could afford their services.
“It was a no man’s land when it came to autism” services,” Ursitti said.
But Michigan’s new law is one of the “most robust” in the country, she said.
Not only does it require insurers to cover therapies, the law uniquely sets up an Autism Coverage Fund to reimburse insurers for services – $15 million for the first year. That means insurers can be reimbursed up to $50,000 for therapies for children through age 6; $40,000 for children ages 7 to 12 years old, and $30,000 for children 13 through 18.
So now Michigan is scrambling to prepare for this new demand on services, said Colleen Allen, president and CEO of the Autism Alliance of Michigan, which recently held a state conference for therapists, state officials, advocates and others.
More than 300 attended, in part to learn how to begin tapping into the complex world of insurance forms and provider ID numbers. Insurers, meanwhile, are stepping into new territory as well as they cover a whole new area of member services that include Applied Behavioral Analysis (ABA) therapy, an intensive therapy that relies repeated positive reinforcement techniques to teach skills and cement good behavior.
While social reinforcement – “great job!” – can motivate and encourage most children, children with autism seem disconnected from such social cues. ABA therapists may offer other rewards, such as M M’s or time with a toy – along with verbal encouragement – to reinforce skills and good behavior.
Eventually, the child associates verbal encouragement as a reward, no longer relying on candy or time with a toy, said Emily Besecker, a board-certified behavior analyst.
Besecker, 28, is from Bloomfield Hills. She moved back to Michigan last year in anticipation of the law change.
In Noah’s case, 30 hours of ABA therapy was tedious, but provided results that his mother characterized as nothing short of miraculous. Two years ago, it was as if Noah operated in his own world – not noticing activity or people around him. At 3 SUP1/SUP/SUB2/SUB years old, his vocabulary was no more than 20 words. He wasn’t potty trained. He made no eye contact, and Nieman longed for a hug or a kiss from her little boy – the kind of affection so typical of young children.
Today, Noah’s vocabulary has expanded to more than 200 words. He is potty-trained and sings little songs. He knows colors. And he offers up those hugs and kisses, Erin Nieman said.
“He does the things that other people take for granted. … Excuse the language, but come hell or high water, Noah was going to have ABA” therapy, she said.
The benefits of therapy are clear, said Allen, at the Autism Alliance. And so is this: Michigan is in need of more therapists and fast.
Board-certified behavior analysts – those who can provide ABA therapy – command more than $100 an hour, but they can supervise the services provided by therapists who are not board-certified, reducing the overall costs.
Still, that means a lot of hiring and training in the next few months.
“I’m being realistic,” Allen said. “It will take a while for services to meet demand, and there will be frustration. But I’m confident that we’ll get everything online so much faster than other states. You can literally set up shop as a qualified provider (in Michigan) and as soon as October rolls around, you’ll have people lining up at the door.”
Jordan Boudreau’s phone is already ringing.
A former Milford resident, Boudreau, 29, left Michigan after graduating from Western Michigan University in 2006 with a psychology degree. Though he and his wife, Christina, 24, wanted to raise their children in Michigan, both knew that it would be difficult for Boudreau, a board-certified behavior analyst, to find enough clients for his services, which can cost $150 an hour.
So Boudreau moved to Florida, which began requiring coverage for autism therapy in 2008, where the change made a huge difference in quality of life for families with autistic kids.
“Families were able to get services. Families were able to go out and do things with their kids and become more part of the community, of society,” he said.
Boudreau moved back to Oakland County, Mich., in December, just as lawmakers inched closer to enacting similar laws here. Now, he said, he’s offering services – $200 for four sessions through his website www.inthebesthands.com. It’s barely a break-even point for now.
But he’s hoping that it will build his client rolls by this fall, when insurance coverage kicks in.
More established services are gearing up, too. The Judson Center, which offers ABA therapy for children, among other services, hired Besecker last year in anticipation of the law change. Additionally, a Judson counselor is getting her board certification to offer ABA therapy, and Judson will add more therapists in the coming months, said Marn Myers, Judson president and CEO .
“We took a leap of faith,” Myers said. “With services so expensive, few families could afford (therapy). But we’re capacity building now.”
For a lot of those families, said Myers at the Judson Center, “there is hope again.”
A greater understanding of disorders on the autism spectrum is ever-evolving. The American Psychiatric Association is reviewing the diagnosing criteria for autism – essentially outlining for clinicians what will and will not be considered autism. In March, the U.S. Centers for Disease Control and Prevention revised its estimates for how many children have autism – increasing rates from 1 in every 110 children to 1 in 88.
Autism Society: www.autism-society.org, 800-328-8476.
Autism Speaks: www.autismspeaks.org, 917-475-5066.