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Calls to Action

Fighting for Autism Insurance in the District of Columbia

Molly Whalen, a District of Columbia mom with two kids on the spectrum, recently testified in favor of legislation that for the first time would require autism coverage in health insurance plans sold in the District. The DC Council votes June 4 on its new Health Benefit Exchange policies which will start operation in 2014. Here is her story:

My husband and I are Washingtonians, and have been homeowners in DC for over 22 years.  When my oldest child was diagnosed with autism, most pediatricians did not even consider discussing developmental milestones with parents of toddlers. In these last 11 years, the environment surrounding autism awareness has very much changed, and with the increase of diagnoses of autism spectrum disorders, it is imperative that it continue to change in the healthcare environment in DC. This can be done by creating a Health Exchange that has meaningful quality standards and transparency for DC’s health market.

In the mid- 2000s, the early intervention structures in DC (both Part B and Part C) failed our children. They did not receive evaluations in a timely manner, they did not receive required therapies, and the first words out of the principal when I went to enroll my oldest at her school, were “Do you have a lawyer?”  The atmosphere of both health care and the school system was horrific for DC families with children with special needs.

When the early intervention system and the schools failed to provide OT, SLT and ABA, my husband and I were able to get these necessary therapies for our children. At the time, our personal insurance would cover the OT and SLT, but at a cap of only 25 sessions a year. We would run out of this each year by February, so we paid thousands of dollars out of pocket stretching our finances perilously thin.

We had the education, finances, and ability to advocate for our children. However, what keeps me, as a parent and citizen, coming before hearings such as this is that not every parent in this city can be an advocate and fight personally and financially for their children.  What happens to the single mothers, the mothers who do not speak English, the fathers who do not have flexible work schedules, the grandparents who must choose between rent and therapy bills, when they are faced with their children’s therapy needs?

When we fought for our children, we were often told, “why don’t you move to Montgomery County or Fairfax County?”  I will tell you what I said then and now -- that Washington DC is my home, it is my husband’s home and the birthplace of my children. I will not abandon my home, because our people, insurance and city government are failing to do what is required by Federal law and what is the right thing to do to insure for quality and appropriate healthcare for all.

My husband has spent every day of the past 30 years protecting the citizens of this city as a police officer, 26 of them as a homicide detective, and is one of the most respected law enforcement officers in this city. Why should we move, why should the firefighters have to move from the city, why must our teachers move, why must the DC government employees move, why should any of us have to move, just to get quality healthcare and appropriate education for our children with special needs?

Health Care transparency will confirm that the health plans provided will offer the appropriate therapies (OT, SLT, Behavior and ABA) that are necessary for children with ASDs – and make these more affordable and accessible to all families of children with ASDs.

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.