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Common therapy for disorder is an expensive, difficult process

MAYVILLE--A black-and-white portrait hangs near the foyer of Tiffany Moen's home in rural Mayville. The shot printed on the canvas depicts Moen holding her son, Andrew, when he was about 4 years old at a family outing to a pumpkin patch. Andrew, ...

Tiffany Moen holds up a photo of her and Andrew when he was 4 at the end of her driveway in rural Mayville. Andrew is now 9 an still goes to therepies three days a week.
Tiffany Moen holds up a photo of her and Andrew when he was 4 at the end of her driveway in rural Mayville. Andrew is now 9 an still goes to therepies three days a week.

MAYVILLE-A black-and-white portrait hangs near the foyer of Tiffany Moen's home in rural Mayville.

The shot printed on the canvas depicts Moen holding her son, Andrew, when he was about 4 years old at a family outing to a pumpkin patch. Andrew, now 9, has autism-he was nonverbal when the photo was taken and didn't start speaking until more than a year later.

Andrew is now a fourth-grader in public school. Moen said his progress over the last few years has been great, a victory she attributed to a regimen that currently takes her and Andrew to Fargo and Grand Forks three days a week for speech and occupational therapy.

"He's come a long ways," Moen said. "I think we've been doing speech for over six years now. We've got a long road ahead of us, but to hear him talk is priceless."

Though they've since stopped, the Moens also had in-home applied behavior analysis therapy, or ABA, for Andrew for about three years. ABA, a commonly prescribed autism treatment program, focuses on teaching individuals with communication deficits to use socially acceptable behaviors to cope with stimuli, handle tasks and respond to situations.

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While various forms of verbal, physical and occupational therapy are available through insurance in North Dakota, ABA is not generally covered.

Moen said Andrew spent an average of 15 hours per week with ABA therapists.

She said her son is on a developmental disabilities waiver administered through the state Medicaid program. Though the waiver helps defray costs, she said it's still not easy to find the funds necessary for ABA.

"It takes some getting creative to find a way to get it paid for," Moen said. "If it comes down to it financially, if you have to pay for it out of pocket, you've got to find the money in your personal budget to pay for it."

$60,000 a year

Sandy Smith, executive director of the North Dakota Autism Center in Fargo, described ABA as the "standard of care" when it comes to therapies for children who have autism.

With the exception of the military's Tricare insurance and the coverage offered to the state's Microsoft employees, Smith said insurance plans in the state will not provide coverage for ABA.

To the east, Minnesota adopted an autism insurance mandate in 2013 that requires some insurers to extend coverage to ABA therapy. Including Minnesota, 44 states currently have health insurance mandates specifically for autism disorders.

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Without insurance, Smith said an average hourlong session of the therapy could cost $45-50 out of pocket. Physicians may recommend up to 40 hours of ABA per week for young children with an autism diagnosis.

"We have had families pay $60,000 a year for their child to be here," Smith said. "You can imagine who that is. They're two doctors in a family, a doctor and a lawyer, that's the kind of family that can afford it. But it's very, very few, we've maybe had three families in the history of the center, so almost 8 years."

From what she's seen, most families will opt instead to pay what they can for ABA and focus more on speech and occupational therapy. Eventually, Smith said, the public school system addresses symptoms of autism in general special education programs.

Game changer

To help families meet the cost of treatments, the state of North Dakota facilitates some services for children and families who meet financial and medical criteria.

But like other public services, those aimed at autism have been affected by funding reductions in the state budget.

Maggie Anderson, executive director of the North Dakota Department of Human Services, said the total reduction to autism services is more than $1.7 million in state and federal dollars, split between two different autism service areas-an entirely state-funded autism voucher and a Medicaid autism waiver.

In total, Anderson said, human services has about $6.1 million remaining for autism services in its adjusted appropriation.

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Families that successfully get a waiver or voucher can use it to reduce the costs of various autism-related services. Both areas have a set number of slots available for participants. As of June 30, the waiver program was pegged at 47 spaces and the voucher had room for 42.

Before the reduction in funding, those limits were expected to be higher.

As part of the allotment, Anderson said the department deferred 25 Medicaid waiver slots. Beyond that, 10 newly created slots in the state voucher program were not filled.

All 89 of the total remaining slots are currently filled.

While there's nobody currently in line for the state's voucher services, there are 107 children on a waiting list to fill a slot to access the Medicaid waiver.

The voucher program is primarily directed at services such as respite care, transportation, tutoring and assistive technologies, such as language generating devices. The Medicaid waiver provides some similar things as the voucher, but adds features like skills training programs.

Anderson said things like ABA would fall under skills training. Starting Nov. 1, she said, the Medicaid state plan will absorb some services currently provided through the autism waiver.

"The skills training is a big one," she said of those getting moved over.

The department is making the shift to open services to more children, Anderson said, particularly in the area of skills training that may otherwise be in scarce supply through the waiver program.

"Rather than children having to qualify for a level of care like they do with a waiver," Anderson said "if a child is available for Medicaid and has an autism diagnosis, they'll be able to access care through the state plan."

Smith said the move-over of the skills training portion could be a "game-changer."

Families that qualify for the DD waiver also qualify for Medicaid, she said, and thus would likely be able to access the ABA-like training through the state plan.

Though Smith had not yet heard how reimbursement for ABA providers would work after the switch to Medicaid, she said the move should help open the therapy to families that need it.

Parents hope for reform

On Monday, a North Dakota support group for families of children with autism gathered at the Ember coffeeshop in Grand Forks.

The group, called Talking About Curing Autism-TACA, for short-drew women from around the area for a presentation on ABA from therapist Toby Trontvet.

The therapy itself was the top-billed item on the night's agenda, though talk eventually turned to the logistics involved in actually getting kids into ABA.

Elizabeth Mauch came to the TACA meeting from Fargo. Mauch, the mother of a 6-year-old boy with autism, briefly told the story of her child's diagnosis.

After the diagnosis, she recalled a conversation with physicians about her son's upcoming care regimen.

"One of them said to me, in her words, 'He's going to need 40 hours of ABA and you won't be able to get coverage in the state,' " Mauch said. " 'So you can either consider moving or consider some huge life changes and pay out of pocket.'"

Initially, Mauch said, the insurance provided by her Illinois-based employer covered the treatment. That coverage eventually ended though, at which point Mauch began submitting claims to an in-state insurer that doesn't cover ABA.

Her own response to the issue of coverage was to work with other Fargo-area parents to draft a bill with a state legislator pushing for autism insurance reform to expand coverage to include ABA.

Mauch said the bill will come up in the next North Dakota legislative session and urged those at the TACA meeting to reach out to legislators to express support for insurance reform.

For Smith, and for Moen as well, the insurance side of the treatment equation is the long goal.

Moen said she believes insurance should pick up the tab for ABA, as it is a medically necessary treatment. In that, she said the early intervention is the best way to ensure a more full life for children like Andrew, whose portrait has been used by TACA to make him a poster-child of sorts.

"If we get them the treatment they need out the gate, they'll be much better off in the long run, so why not do that?" she said. "Just because they have a disability doesn't mean they don't get to have a life."

Tiffany sports this years TACA (Talk about curing autism) fundraiser shirt Wednesday morning.
Tiffany sports this years TACA (Talk about curing autism) fundraiser shirt Wednesday morning.

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