North Dakota families fighting for access to life-changing autism services
FARGO — Some are calling North Dakota one of the worst states in the country to live with autism.
One in 68 kids will be diagnosed the disorder and the state does not currently cover the primary treatment.
This week, legislation to mandate coverage failed in the North Dakota House on Tuesday, but received a re-vote and passed Wednesday. It now awaits its turn in the Senate.
Brody Mauch, 6, walks into a therapy room at the North Dakota Autism Center with a child-sized tool belt tied around his waist and plastic wrench in his fist.
"What seems to be the problem?" Brody playfully asks his therapist, Paige Davis.
"Look, my house is a disaster," Davis says, gesturing to a messy dollhouse. "Can you help me fix it?"
To Brody, it feels like playing pretend, but the games are actually specialized therapy called Applied Behavioral Analysis (ABA).
It's now the No. 1 prescribed method for working with someone on the autism spectrum.
Doctors diagnosed Brody with autism when he was a toddler.
His mother, Beth Mauch, says, "He would scream and scream, basically just not stop screaming."
He's now 6 years old and the ABA therapy is teaching him critical behavior skills.
Role-playing with two monster hand puppets, Davis uses a monster voice and directs him to find yellow and red laminated cards from a line of colors.
When he picks up the correct cards and feeds them to his monster hand, she says, "You found yellow and red! Do they taste good?"
Brody's mother says the therapy has improved his communication skills and behavior.
"He relaxes, we're able to all sit down at the dinner table," she says.
The Mauchs consider themselves lucky because their out-of-state health insurance covers the therapy.
But for many in North Dakota, an autism diagnosis is more than just a lifestyle change.
Recalling her son's prognosis from specialists, Mauch says, "They tell you you could either leave the state or make some huge life changes."
Forty-five other U.S. states require insurance companies to cover ABA therapy.
Sandy Smith from the North Dakota Autism Center says, "Unfortunately North Dakota was one of the five worst states to live in if you have a child with autism."
The services are available at places like the North Dakota Autism Center or the Anne Carlsen Center, but out-of-pocket, ABA alone can cost between $30,000 to $60,000.
The state offers autism vouchers, but there are only a few dozen up for grabs and the waiting list stretches almost five years.
Even on the waiver, Samantha Stewart's son used most of the funds for one potty-training class.
"It's not OK," Stewart says. "We need to have these things available to these children."
Christina McNeal moved from Valley City to West Fargo for specialized treatment.
Her 3-year-old son Lennon is on the waiver waiting list.
McNeal says, "The difference between having services and not having services is their level of functioning and ability when they're adults."
The McNeals have been considering another move out of state if North Dakota doesn't start covering ABA.
"We need it," McNeal says. "Why should we be one the last few people in the entire nation that are offered a medically necessary treatment for our children?"
Other families agree they can't wait much longer.
Stewart says, "If we don't act on this now, we're going to have a whole generation of kids that had the potential to reach independence and success and they simply didn't get what they needed."
WDAY reached out to North Dakota's primary insurance companies.
None of them have committed to covering ABA unless the bill passes.
Blue Cross Blue Shield and Sanford both say they're working with doctors and patients to determine future benefits coverage.