Can legislatures heal?

Reports of autism cases per 1,000 children gre...

Diagnoses of ASP have risen dramatically. (Image via Wikipedia)

What would you do if your child were diagnosed with a baffling condition and the best treatments were expensive and time consuming? What you you do? Anything and everything, I expect.

That’s the choice facing parents whose children have been diagnosed with autism. Autism spectrum disorder is a puzzling, disheartening, frustrating, frightening and compelling condition that effects thousands and thousands of people and their families every year. It doesn’t fit neatly into a box. It doesn’t follow the rules. There are no pills to cure it and it doesn’t respond to a quick medical fix —  one part of the maddening puzzle of autism. Treatment for the disorder is long term, intensive and expensive — but absolutely critical for these children.

Here are some statistics about autism from the National Autism Society’s website:

  • 1 percent of the population of children in the U.S. ages 3-17 have an autism spectrum disorder.
  • Prevalence is estimated at 1 in 110 births.
  • 1 to 1.5 million Americans live with an autism spectrum disorder.
  • Fastest-growing developmental disability; 1,148 percent growth rate.
  • 10 – 17 percent annual growth.
  • $60 billion annual cost.
  • 60 percent of costs are in adult services.
  • Cost of lifelong care can be reduced by two-thirds with early diagnosis and intervention.
  • In 10 years, the annual cost will be $200-400 billion.
  • The cost of autism over the lifespan is $3.2 million per person.

Another maddening aspect of autism is that many insurance companies won’t cover the expenses associated with necessary care and promising treatments.

Gay Finlayson

Gay Finlayson (’76), one of our Be the Change people, knows this first hand. Two of her three children, Marit and Neil, were diagnosed with autism. “Our insurance company cut us off,” Gay says. In fact, the whole family lost coverage after Marit’s diagnosis.

Early in Gay’s journey with Marit and Neil, she began looking for answers about the puzzling behaviors exhibited by her daughter. Back then, few answers were to be found. Autism was not well understood. Few people even knew what it was. Initially, no one could give Gay answers to why Marit was the way she was. Her mother, however, suggested that Gay, who was living in New Mexico, have Marit evaluated at JMU’s Early Childhood Development Center. The late Dr. Elizabeth Finlayson was quite familiar with Madison. She served as dean for summer school, was founder and director of the Bachelor of Individual Studies program, and she directed student orientation until her retirement in 1985.

Gay’s mother’s instinct was correct; the people at JMU knew. Gay finally had a diagnosis. Then she went to work. That was more than 20 years ago. Since then Gay has sought answers and assistance for her own two children — and for thousands of others.  And she’s become a champion at lobbying legislatures to help. “I would have never imagined that public policy would ever become even an interest much less a passion,” she says. “I think it speaks to just how much having children changes how we view our world.”

I heard from Gay recently, prompted by encouraging news out of the Virginia General Assembly. This week, the Senate passed a bill requiring insurance companies to provide care for these individuals. Although the Virginia bill is limited and still needs the governor’s signature, it is clearly a step in the right direction.

Gay continues to work for improvements in the support and care of individuals challenged by autism. She writes: “I just got back from attending the Combating Autism Act grant meeting in D.C. The bill sunsets this year, and we’re all feeling apprehensive about the political climate in the House of Representatives.  I’m waiting right now for a bill I’ve been working on to be introduced in our legislature. It’s an IEP supplement for children with autism in public schools in New Mexico.  I’m managing a couple fun programs here, plus doing some other public policy work with state partners.”

An uphill battle for funding — for healing — that Gay Finlayson continues to wage.

By the way, Gay is not the only Duke in her family. In addition to her mother, Gay’s sister Terry Finlayson (’79) and brother Michael Finlayson (’75) are JMU graduates, as well as their dad Col. Hal Finlayson, who earned an MBA from JMU in 1980.

You can learn more about ASP here:  http://www.nimh.nih.gov/health/publications/autism/complete-index.shtml

To read more about Gay Finlayson and her work as an advocate for individuals with autism click here: http://www.jmu.edu/bethechange/people/finlayson.shtml

You can also read more about ongoing work at JMU to unlock autism here: http://www.jmu.edu/ttac/autism.shtml

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About James Madison University
This blog is about the people of James Madison University — a caring, committed and engaged community spread all over the world, making lives better and brighter, healthier and safer, kinder and bolder. As Gandhi suggested, we are taking steps to BE the CHANGE we wish to see in the world. And these are our stories....

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