Sunday, December 6, 2009

Let's end autism discrimination in 2009!


-Originally posted on December 11, 2008 at www.exceptionalfamilies.net.

Wouldn’t it be great to start 2009 with the goal of ending discrimination against families with autism? That is one of my goals, and I would encourage you to join me in the fight. I am working in legislative District 25 (Puyallup and surrounding areas) to try to garner support for the proposed autism insurance parity legislation in Washington State. One in every 94 boys is now estimated to be diagnosed with autism spectrum disorder (as of 2005). Affected families are filing for divorce at unprecedented rates (more than 80%!). The top reason for divorce is financial strain, and anyone who has dealt with autism is keenly aware of the intense financial burden a child on the spectrum presents, particularly when insurance doesn’t cover the autism diagnosis code. Many families can spend upwards of $50,000 PER CHILD with autism, PER YEAR!

Our family is dealing with TWO boys on the spectrum, and we are trying to pay for occupational, physical, and speech therapy. We haven’t even been able to consider ABA for our boys simply due to the high cost and lack of benefits. Insurance coverage has been one of our biggest issues in trying to do what is best for our kids. Back when our house had some market value, we took out a home equity line on our home in preparation for the medical bills to come due. If we were to tap into the rest of the available balance, we will be underwater in our mortgage. Due to the therapy schedule and demands of raising my boys, I don’t have time to work a regular job. Even though we are a single-income household, my husband makes too much for us to qualify for any sort of assistance. Who would have ever thought that my husband’s income would be a detriment, and that we would have to place our home in jeopardy to do to the bare minimum to care for our children?

The most upsetting thing is the fact that autism is a diagnosis that automatically qualifies our family and others like us to be the recipients of insurance discrimination. Children with other medical or developmental issues are getting insurance benefits and the care they need, but we are being singled out for exclusion and the eventual financial hardships that go along with this type of discrimination. The truth is that autism typically responds well to early intervention, and the cost savings is millions of dollars per child versus those who do not receive the needed services at an earlier age. It doesn’t take a degree in finance to realize that spending a little money upfront is better than spending a huge amount of money in the years to come. A small contribution towards insurance parity now will save taxpayers millions of dollars in the long run. Doesn’t that seem like a good use of taxpayer money?

If you believe that families dealing with autism should not be discriminated against and deserve insurance parity, I highly encourage you to visit the Washington Autism Advocacy website and sign up to show your support. Check it out at: www.washingtonautismadvocacy.org. Please sign up no matter if you have a child with autism or not, if you are a parent or professional, or if you are in District 25 or elsewhere. Take a minute to call or email your Senators and Representatives and ask them to cosponsor Autism Insurance Parity. I will be happy to supply you with a sample phone script or sample letter to make this an easy process. Here is a link to find your legislator: http://www.washingtonautismadvocacy.org/legislative/finder.php.

You can email me at specialfamiliespc@gmail.com with any questions or to request the sample letter/script, FAQ’s or flyer. The session starts on January 12th, and we need to get legislators on board before the session starts. Let your lawmakers know how you feel about this issue. Help us fight for our kids with autism! Thank you so much for your support and I hope that 2009 is the year that we end discrimination against our children!

Update as of December 2009:
Shayan's Law did not get enacted in the 2009 session, so the fight continues. Please check www.washingtonautismadvocacy.org to learn how you can help in 2010.

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