Autism Insurance Coverage: It's Time for Congress to Listen

If you want to make the world a better place
Take a look at yourself and then make a change
~Michael Jackson

There are moments in life, realizations that occur, that just can't be shaken. One of those unshakable moments for me was the day I stood in my kitchen and realized that I was going to have to pay for Jack's medical treatment.

All of it.

Was it because of something I had done?

Was it because of something he had done?

No ... it was because of his diagnosis.

We had just navigated the minefield of evaluations, diagnosis....prognosis. We were bloodied, but still walking. I had blinked back my tears and swallowed the lump in my throat as my pediatrician told me about treatments that would help keep me baby out of an institution. Treatments that had been well-researched and endorsed by the American Academy of Pediatrics.

I held Jack's warm hand in mine as I pushed open the glass door of the medical office and walked to my car, prescriptions and instructions tightly clutched in my grasp.

Hope was just a few phone calls away.

I started making appointments. On the other end of the line I heard benign voices muttering words like "wait list" and "paperwork to complete..." No surprises there. I was up to the task.

One word I did not anticipate hearing over and over and over: Denied.

But I did. And I met family after family who heard that word over and over too.

Denied. Denied. Denied.

I knew in my heart that this was just plain wrong. People should not be denied health insurance coverage for evidence-based treatments just because they've been diagnosed with autism.

Families should not have to sell all they have and move and empty their savings just to pay for therapy.

People with autism should not do without critical therapies just because of their bank balance.

It is just so wrong.

The irony is that the denials not only empty the bank accounts of families seeking treatment for autism, but it robs them of much-needed time.

Autism is a 24/7 lifestyle. People with autism need constant supervision. Many times they have trouble sleeping. They have seizures. They can have self-injurious behaviors. Their inability to communicate can cause them to scratch and bite and kick in frustration. Families many times are exhausted and broke. They don't have the time or resources to fight for insurance coverage.

And health insurers exploit that and persist with their knee-jerk response: Denied. And they get away with it.

The time has come for the federal government to end this discrimination once and for all. In every state. In every health insurance plan. That is why I am sharing the following with you:

Autism Speaks, the nation’s largest autism science and advocacy organization, announced in a press release today that they have launched a new national television advertising campaign highlighting private insurers’ blatant discrimination against children with autism and calling on Congress to put an end to it as part of the broader health care reform effort. The thirty-second ad, “Neighbors,” will air nationally on CNN, CNBC, and MSNBC.

You tube


"Neighbors” depicts two young boys who are next door neighbors – one, whose insurance has given him access to autism therapies is shown playing with other kids; the other, who has been deprived of access to therapies, sits alone on his lawn, socially isolated. The TV spot ends with a call to action, urging the American public to call United States Senate Majority Leader Harry Reid (D-NV) and House Speaker Nancy Pelosi (D-CA) to tell them that any national health care reform plan that does not include autism insurance reform is unacceptable.

“Short of finding a cure for autism, there is nothing that can have a more significant impact on the lives of people with autism and those who love them than putting an end to insurance discrimination,” said Bob Wright, co-founder of Autism Speaks. “During the presidential campaign, President Obama committed to ending autism insurance discrimination, and the pending comprehensive health reform legislation is clearly the way for that promise to be fulfilled. Now is the time to finally right this terrible wrong.”

Yes it is Mr. Wright. Thanks for saying it.

Please readers. I need your help. Take time to call today. Call (202) 224-3121 and tell Speaker Pelosi and Leader Reid that that health care “reform” that fails to stop autism insurance discrimination is unacceptable.

And for those of you who are frequenters of Autismville, you just might recognize a little guy in a green striped shirt in the ad. More to come on that experience very, very soon.

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For more information about the campaign to end discrimination against people with autism by health insurers, please visit http://autismvotes.org.