Medicaid-funded Children's Autism Waiver program deemed 'incredibly successful'

2013-02-27T00:15:00Z 2014-08-06T06:14:17Z Medicaid-funded Children's Autism Waiver program deemed 'incredibly successful'By CINDY UKEN cuken@billingsgazette.com The Billings Gazette

A Billings mother says a 4-year-old state-run program aimed at helping autistic children has been an “unbelievable blessing” to her family and her son who was once considered nonverbal.

“It’s like winning the lottery,” said Beki Wald.

The Medicaid-funded Montana Children’s Autism Waiver, started in 2009, provides early intervention to children ages 15 months to 5 years old.

Autism spectrum disorder is a lifelong developmental disability that affects one’s social and communication skills.

One of those children is Kannin Dashall Wald, the 7-year-old son of Matt and Beki Wald. He was one of the first 43 children to complete the intensive program.

The program provides 20 hours a week of direct intervention service to each participant at a cost of about $43,000 per year for each child for three years. The annual program budget is about $2.1 million. However, many of the participants in the Children’s Autism Waiver program also are eligible for autism treatment through health insurance. Consequently, the program serves as payer of last resort, meaning the families’ insurance carrier is billed first, and any remaining costs are billed to the program.

Waiver services include occupational, physical and speech therapy, and transportation, among other things.

When Kannin was 2, he began to develop “strange behaviors.” He would line up his cars, books and blocks in perfect lines. He constantly gripped something in each hand to bang on walls and furniture incessantly. He spent hours humming, mumbling and spinning in circles. The loud noise of lawnmowers and vacuums unnerved him. His sleep patterns were erratic. His speech was so impaired that he could not ask for food or water. When he was 3 ½ years old, he was diagnosed with high-functioning autism. At one time, he could not even pick up a crayon.

“I cannot attribute where Kannin is today to any one person, agency or therapy clinic,” said Beki Wald. “But if any one of these people or components of this waiver program were missing, we wouldn’t be where we are today.”

Through the program, the Walds were able to purchase an iPad for Kannin.

“That has opened up a whole new world for him,” Beki Wald said. “He can read. He can write.”

The Wald family is not the only one to benefit from the program.

The program is said to be “on par with published results from the best national programs” and has been “incredibly successful,” according to a recently completed report by the University of Montana. The report documents positive outcomes for the first 43 children who recently completed the intensive three-year program.

To determine program effectiveness, the report focused on three common measures, including if the child still exhibits symptoms that would result in an autism spectrum disorder diagnosis, if the child is able to receive general education services and if the child has full, moderate or limited community access.

“The data provided in this report is so encouraging,” said Richard Opper, director of the Montana Department of Public Health and Human Services. “It clearly shows that early intervention works.”

Children from Libby, Kalispell, Polson, Ronan, Missoula, Stevensville, Hamilton, Darby, Choteau, Helena, Townsend, Butte, Bozeman, Livingston, Billings, Miles City, Malta and Glasgow were part of the first group of children to complete three years of therapy under the Children’s Autism Waiver Program.

While the program has improved the lives of children, it has also improved overall family life as well. Some families have stated they are now able to be a family and participate in activities together. The report shows that 65 percent of the participants now have full community access. In addition, 65 percent are receiving general education services in public school.

“Many families with autistic children struggle to do many of the things most people take for granted, such as attending local community events,” said Jeff Sturm of the DPHHS Developmental Disabilities Program. “This program has helped so many families. It is by far the most exciting program that I’ve ever been involved with in the 35 years I’ve been doing this work.”

Wald said her son is now able to go out to dinner with the family, go to the public library and to the grocery store.

“He doesn’t get so rigid and feel out of place in social situations,” Wald said. “He’s up for anything now.”

The report also states that nearly 50 percent no longer exhibit symptoms that would result in an autism spectrum disorder diagnosis.

“We’re impressed that 50 percent of these kids no longer carry the diagnosis,” Sturm said. “We’re feeling real good about it.”

However, Ann Garfinkle, of the University of Montana, who wrote the report, said this statistic should be interpreted with caution. “Autism spectrum disorder is a lifelong disorder and it may be that as these children age, they may need additional support or services,” she said.

The report indicates that both the state and Montana families have saved money.

“While these children may need additional services in the future… their functioning level reduces the need for families to miss work or to fund additional therapies,” Garfinkle wrote in the report. “This savings, while challenging to predict, will be in the millions of dollars.”

The program has proven so successful and so popular that 55 children are already enrolled in the second, three-year round. There are at least 60 children on a waiting list.

Copyright 2015 The Billings Gazette. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

(1) Comments

  1. russff
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    russff - February 28, 2013 2:28 pm
    It is unfortunate that parents can only get Applied Behavioral Analysis (ABA)for their children under Montana waiver programs: the Children\'s Autism Waiver and the Developmental Disabilities (DD) waiver, both of which are strictly limited by numbers of available slots. Medicaid law under the Early Periodic Screening Diagnosis and Treatment provisions requires Montana and every other state to provide ABA if it is medically necessary for children on Medicaid. What this means is Montana is rationing a service to only those children on a waiver program which it legally CANNOT ration. The way Montana is doing this is by not providing billing codes in the Children\'s Mental Health system (CMHB) or the medical portion of Medicaid for providers to bill for ABA, which is one of only 5 evidenced based practices (EBP) proven to substantially help children with autism. Ivar Lovass our of UCLA showed that if he got children with autism by age 3 he could mainstream 3/4s of them by 2nd
    grade and the other /1/4 improved substantially and required many fewer services. Kennedy Kriegar Institute in Baltimore has similar data showing how effective ABA is in mitigating or eliminating the symptoms of autism. The US Surgeon General, more than 10 years ago, recognized ABA as the primary method of treating children with autism. The American Academy of Pediatrics also recommends ABA as a primary treatment for children with autism. It is not experimental. It is probably one of the most proven methods for mitigating the symptoms of autism.

    Generally, ABA based therapy is the most available of the 5 EBPs in Mt. We have about 15 certified practitioners, up from 3 available when I fought this issue in court with Medicaid and won for one youth in the Developmental Disabilities system. That case is why ABA is now available in the DD waiver system, but I\'ve been told by CMHB it will take another lawsuit before CMHB or Medicaid will pay for it outside the waiver programs.

    This is unconscionable of MT to make parents feel they\'ve won a lottery to get a Children\'s Autism Waiver slot when in fact their children are entitled to these life saving services if they are medically necessary for maximum reduction of their disability and restoration to their highest functional level. And ABA is! Last year, both Florida and Washington State were sued by advocates for ABA for kids with Autism and have been court ordered to provide it or settled and now provide it. We need more lawyers willing to take on these cases. Every year these kids lose makes it harder to undo the damage done and costs the state more in educational costs, vocational rehabilitation costs, lost productivity costs and sometimes, unfortunately, criminal justice costs, not to mention the costs to the families. Families with a child with autism have extremely high divorce rates, so the cost to our neighbors and friends is not negligible. What is unfathomable is that the short sighted
    vision of the leaders of our state in the Medicaid program are willing to shift these costs to every other state system and the families instead of paying for the services they are legally required to pay for. Alexis
    - Alexandra Volkerts alexis@matr.net

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