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State Moving Backward with Autism Services

A recent editorial in the Chaska Herald by parent Cecilia Laube demonstrates that parents of children with autism in Minnesota have many challenges ahead in 2013. With continued cuts to insurance and government coverage of autism services, parents searching for affordable, evidence-based treatments for their children are running into more barriers. The Autism Recovery Foundation recognizes these struggles and believes all children should have affordable access to ABA therapy. Read Laube’s full editorial here:

Commentary: State moving backward with Autism Services

It is Christmas Day after Santa has stopped by and left a few things for my kids. It’s a very cold day in Minnesota, and I have no desire to do anything more than stay inside and watch a few movies with the family.

While we are truly thankful for what we have received, and the opportunity to spend time with family, my mind is also wondering about the beginning of 2013 and the challenges that it brings as it relates to my 7-1/2-year-old autistic son. My son was diagnosed when he was 3-1/2 years old, so we have been navigating this world of autism for four-plus years.

As I look back, I have noticed that things are not getting any easier in Minnesota. On the contrary, they are more difficult and challenging as it relates to finding services for my son.

The New Year is starting with:

  • News of insurance companies no longer covering Applied Behavioral Analysis therapy (ABA), although it is the one proven treatment for autism.
  • Limited coverage for speech and occupational therapy (OT) services, although autistic kids do medically require more than the average population.
  • Self-insured companies deciding not to cover autism-related services, although it is exclusively up to them to decide to do it or not.
  • Providers terminating services due to the loss of funding, although some kids may not have an alternative.
  • Schools not having enough personnel in their special education departments to provide what is truly needed for kids like my son.

So I cannot help but wonder: Why are things going backward in Minnesota?

As I stand and look at the overall system, it seems broken. There are multiple parts and participants that seem to work in silos, resulting in duplication of efforts, with a lot of paperwork and overhead, losing complete sight of what should be everyone’s primary goal: full integration of kids like my son.

Shouldn’t we look at achieving such a goal regardless if it is the private or public sector?

That is exactly the perspective that my husband and I as parents take when we are simply trying to help our son to get better. To fight for his functional life, so he is able to attend school full-time next year, perhaps not requiring any assistance in a year or two, go to college and become an independent member of society like every other U.S. citizen wishes to do.

I know it is possible and I am convinced there is a solution, and certainly a better way to do things. I have learned that other states, such as Massachusetts, have not only passed a mandate for insurance companies to cover autism-related services, but have school personnel trained in ABA and providing such therapy to kids, making autism part of their day-to-day lives. So why couldn’t Minnesota do the same or better?

My son is not only a U.S. citizen with the same rights as anyone else, but also one who works really hard every day to overcome his autism-related disabilities.

As I look back during these last four year, he has made a tremendous progress — not only noticeable to us, but to the rest of our relatives, teachers, social workers, and doctors.

It is with such joy that we received compliments during the holidays about “how much more integrated he seems” and “how fabulous is to see him initiating social interaction.” Let me tell you, that progress did not happen by itself; rather it is the result of all those therapies that the current system is putting in jeopardy for 2013.

His medical needs are really not that much different from the cancer patient need for chemo and the diabetes patient need for insulin. It is just a different body part, the brain, which demands the treatment. So why is the current system focusing on what my son cannot do, rather than what he has accomplished and how much more he needs to go to get to the finish line?

Why is the current system not focusing enough attention on ensuring that autistic kids’ transition to school is successful, adequate and with the sufficient professional support, regardless of the school they attend?

As we start the New Year, as a mother of an autistic boy, I wish:

  • Minnesota would pass a mandate for insurance companies to cover autism-related services.
  • An overarching department would work with parents to develop a long-term plan for each autistic kid with the ultimate goal of full integration. Such plan would serve as guiding principle for providers, insurance companies and schools to follow.
  • There would be enough providers to satisfy all the increasing demand for autism-related services through out the various stages of a kid development, including but not limited to transition to school.
  • ABA training would be provided to all educators, and its principles applied when teaching.
  • All excessive paperwork and duplication of efforts would be transformed into monitoring providers and schools to ensure policies and procedures are conducive to the achievement of full integration goal.
  • Progress be monitored on an annual basis, which is a much more reasonable pace given the type of disability.
  • Self-insured companies would make the decision to cover autism-related services.

(Editorial re-printed with permission from the author)