I am saddened by what has become of legislation meant to guarantee insurance coverage of services for individuals diagnosed with autism that recently passed the Maine House and Senate.
The original intent of the legislation was to ensure that private insurance companies cover services for individuals diagnosed with autism through the age of 21. Currently, insurance must cover these services through age 5. In an attempt to have the bill approved by the Insurance and Financial Services Committee, the age was lowered to age 10. Unfortunately, LD 347 still only garnered 8 out of 13 committee votes.
Even with this amendment, it is unlikely that this legislation will become law with our highly partisan, dysfunctional, political environment. The bill is currently awaiting action by the Legislature’s Appropriations Committee, which would have to devote funding for the added services.
I am concerned as a parent of a child with autism, as an educator and as a taxpayer.
The biggest concern I have is that a neurological impairment is treated differently from a physical impairment. If a child were born with an obvious physical disability, insurance would cover services for that individual throughout his or her lifetime — no questions asked. Insurance would not be allowed, for example, to deny the purchase of a wheelchair simply because the child turned 21 (or 10 years old).
However, if a child is born with a different biologically based impairment, service coverage can be denied under current law as soon as he or she reaches age 5. The most frustrating part of the situation is that there have been decades of research that show a number of interventions can have dramatically positive effects on the lives of individuals diagnosed with autism. For some individuals, interventions have been so effective that they no longer qualify for an autism diagnosis. These interventions are not experimental or fads; they are truly effective — yet many children are denied them.
In the past, insurance companies have argued that some of these services, such as occupational, speech and behavioral therapy, are not medically necessary for autistic children (like a wheelchair would be for a physically impaired child). I fervently disagree!
As the head teacher in a preschool, I was assigned to and personally involved in the intervention of a child who was diagnosed with severe autism. The child was unable to communicate, interact with others and perform any daily life skills. With the help of motivated and knowledgeable teachers, doctors and therapists using evidenced-based interventions, the child made dramatic gains. The child is now as happy, social, interactive and independent as any other child of the same age.
No one can argue that these services were not necessary and invaluable to the long-term health of this child. Yet for every success story, there are many other families who struggle to care for their children and get the services they need for their child to succeed. Because private insurance is not required to cover certain services, many families rely on the MaineCare system, pay for services out of pocket or simply go without interventions proven to be effective.
I, too, have witnessed the anguish in a mother’s eyes when much-needed services were denied or not available locally. My child has been fortunate that he has, for the most part, received the services he has needed. However, there have been many sleepless nights and conflicts with the state, insurance companies and school districts.
It is disheartening that in 2014, we do not have the medical and political systems in place to support children with autism and their families. The CDC reports that 1 in every 68 children will be diagnosed with autism. This trend has been increasing for the last 20 years, yet it seems that little has been done to support these individuals.
It appears some lawmakers do not fully understand the scope of this problem. By not investing more in necessary interventions, individuals with autism may end up institutionalized, living in group homes, living their entire life with their financially overburdened families, even relying on welfare. These outcomes are all more costly long term.
With appropriate interventions and support, every child diagnosed with autism can become a valuable, independent and productive member of the community. It’s time for real, long-term, focused solutions. In my opinion, saving a few thousand dollars today will end up costing tens of thousands of dollars down the road. If this bill does indeed become law, it will do little to impact the lives of autistic children and their families. We all deserve more.
Roy Ulrickson III of Dexter is a parent of a child diagnosed with Asperger’s syndrome (a mild form of autism) and has been working with children with special needs in a preschool, home and public education setting for nearly eight years. April is Autism Awareness Month.