- Associated Press - Sunday, May 8, 2016

BISMARCK, N.D. (AP) - MiKynna Cummings, 2, sits cross-legged on the carpet picking up colored number puzzle pieces and pressing them firmly into a puzzle. One-by-one, she fits each foam piece into their correct spots.

“You did it!” said Sara Joersz, an occupational therapist, after MiKynna pushes the purple “3” piece into its outline on the puzzle.

MiKynna, who was diagnosed with autism when she was 15 months old, comes to Red Door Pediatric Therapy in Bismarck three times a week for speech and occupational therapy sessions. During the session, Joersz has her complete a puzzle to hone her fine motor skills, the Bismarck Tribune (https://bit.ly/1rtEea2 ) reported.

Before MiKynna started therapy at Red Door a year ago, she was unable to use her fingers and would instead just grasp things. Now, she holds the puzzle pieces between her fingers with ease. Speech therapy also has helped her learn how to talk, which, up until September, she was unable to do. Now, she’s able to express herself through her limited vocabulary.

“She’s definitely improving,” her mother Amber Cummings said during the therapy session last week.

Cummings’ husband was recently laid off from his job as a driller on an oil rig. MiKynna’s therapy sessions are covered through Medicaid until the end of year, Cummings said. Come January, Cummings says she’s not sure whether she’ll be able to afford the therapy sessions without coverage. Last year, Cummings applied to get MiKynna on the autism Medicaid waiver, but was waitlisted.

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There are 94 slots statewide on the waitlist for the autism Medicaid waiver program, which is managed by the North Dakota Department of Human Services, but recent mandatory state budget cuts prohibited the department from expanding the waiver program to serve an additional 25 children over the 2015-17 biennium. A state-funded autism voucher program also won’t expand.

The Department of Human Services was required to cut $53.9 million from its more than $1.33 billion in general fund appropriations, the largest of any state agency.

Some parents, including Cummings, who were anticipating services through the autism waiver program, are frustrated by the recent budgetary changes.

“What we’re hearing is that families (on the waitlist), they just really are devastated because now they were relying on services,” said Lorena Poppe, director of autism services at the Anne Carlsen Center, which provides autism services all over the state.

The autism Medicaid waiver started in 2009 and provides services for families with autistic children, birth through age 4. In 2014, it was amended to include birth through age 7, and now, this year, the age range will be expanded to age 9. The state-funded autism voucher program started in 2014 for children between ages 3 and 18 who are not on a Medicaid waiver and families who can’t get on the waiver because they don’t meet the income qualification but still need services. The voucher program offers up to $12,500 a year for every child with a qualifying diagnosis.

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Anne Carlsen Center is providing services to 71 children across the state, 40 of whom receive services through the autism Medicaid waiver.

The inability to expand the autism Medicaid waiver due to budget cuts is “disheartening,” Poppe said, especially when she’s heard state officials say, “We’re really getting by OK even though all these budget cuts happened because people aren’t losing their jobs.”

“But that’s not even the most significant issue,” Poppe said. “It was a loss of what was going to be there.”

Poppe said the autism waiver covers much-needed early intervention services for children. With autism, the earlier the better, she said.

“Kids who are preschool age, if they can get the more intensive types of support and interventions, they may go on and not need as much support in the school system,” Poppe said. “They may not need as much support throughout their lifetime because of that early intervention.”

Vicki Peterson, a consultant at Family Voices of North Dakota, said she works with many families on the autism waiver or who have children who were screened for the waiver and now are waiting.

“It’s very hard to sit on a phone with a parent who you connected earlier with Anne Carlsen, got the screening, knew we were gonna do this, and then they call you and they go, ‘It’s gone, Vicki. Where do I go now?’” Peterson said.

She tells them she doesn’t know.

“There’s so many frustrated parents,” said Dee Daniels, a Bismarck mother of a 5-year-old boy with autism. “There are some parents who haven’t even applied because they don’t even think it’s worth their while. Why bang their head against the wall?”

Daniels’ son, Grant, has been on the autism Medicaid waiver since 2014. He receives Anne Carlsen services, Medicaid, and respite care through the waiver program.

“He has gained a lot of skills,” Daniels said. “Grant used to walk in circles and hum a lot, but now . his eye contact has gotten so much better.”

And social situations used to overwhelm him, Daniels said, and they still do, but he’s getting better.

“Even the little things . he can pull up his own pants, put his own shirt on, put his jacket on with help. Before he could never do any of that stuff,” she said. “The little battles are just amazing, the little things that he does sometimes.”

Cummings, whose daughter MiKynna is on the waitlist for the autism Medicaid waiver, says she’s worried her daughter will lose the skills and progress that she’s made this year with her therapy sessions. Losing coverage at the end of the year means they’ll have to cut down on a lot of the services she receives.

“She only started talking in September,” Cummings said. “Doctors worried she wouldn’t ever talk.”

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Information from: Bismarck Tribune, https://www.bismarcktribune.com

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