Who Pays for Autism?

Bill Long 11/1/07

Law, Insurance and the Autism Explosion in America

This is my autism page, launched November 1, 2007. I first took an interest in autism and those afflicted by autism spectrum disorders about 18 months ago, after meeting and talking with Dr. Stephen Edelson of the Autism Research Institute. He arranged a meeting between me and Dr. Bernard Rimland in San Diego in July 2006, and both of them urged me to bring my experience as a litigation attorney and law professor (insurance law and other subjects), as well as my commitment as a writer, to help understand and contribute to the perplexing and growing field of autism diagnosis, treatment, and funding with special emphasis on the legal issues faced by families of children with autism.

After having spent the past year or so trying to sharpen my understanding of autistic spectrum disorders, I have decided on a two-pronged approach to the problem--launching this site and writing a book. The book is tentatively titled "Who Pays for Autism?", and will consist of research on a number of subjects relating to current attempts to pass legislation that spread the cost of autism treatment among parents, insurance companies, the state, federal Medicare programs, schools and other possible sources.

I plan to make the web site more broadly based, and include most of the following: (1) stories of those whose emotional and financial "house" has been devastated by autism's ghoulish realities, (2) discussions of the history of mental health treatment in America (as it relates to autism), (3) discussion of terminology used to try to understand autism--i.e., autism as "neurological" problem or "mental health" problem, distinction between "rehabilitation" and "habilitation, etc.; (4) insurance policies and treatments for autism; (5) state laws that deal with funding of autism treatment--including mental health parity laws and insurance mandates of various kinds; (6) court cases of note that help us get a handle on how the legal system at present considers autism spectrum disorders; (7) attempts to pass federal laws relating to funding for autism research and treatment; (8) educational programs through the public schools that attempt to provide services to children with autism spectrum disorders; (9) attempts to deal with the long-term autism "time-bomb" in American life--what to do about people with autism who have grown beyond the ages where most laws designed to help families apply to them; and (10) various legal cases where families of children with autism have run into legal problems growing out of the child's autistic behavior.

This, as you see, is a formidable list of topics, and one that will take quite a bit of work to "flesh out." I am helped in this task by many wonderful "blogs" on Autism, numerous websites that deal with one aspect or another of the issue, books, articles, legal cases and, probably most important, frequent consultation with parents, doctors, legislative staff treatment specialists, teachers and lawyers interested in these issues. Citation to these sites and people will be liberally given, when appropriate.

How Best to Use this Site

Most of the topics listed above will become the subject of its own "page" or series of essays. Your "click" on the links above will take you to those essays on that topic (don't worry; these links will begin to appear!). The listings on the left can be accessed from this page--and are primarily reviews of significant books and articles which I feel have shaped our understanding of autism. These "orientation" essays are intended to give you a means of entrance into this fascinating, interdisciplinary and complex field of inquiry. My hope is over the next year to fill this site with hundreds of essays that will begin to elucidate some of the dark and bright corners of the issue of autism, especially dealing with issues of how we decide to fund the treatment for autism services in the United States. I am also open to learning about autism issues in other nations.

My Approach

When I began to do lots of reading in this area, I was told that everyone comes to it with "biases." One scholar in the field told me that she has never seen such an area of inquiry so laden with internecine wars, ideological battles, and unproven assertions. Some people I have talked to chalk this up to funding issues--money is apparently not only the root of all evils, as the Scripture says, but is the fuel for all projects and controversies.

My approach can be stated simply: I am primarily interested in making the case that the costs borne by families to treat children with autism (which can range up to $100,000 per year) ought to be more equally distributed than they now are. Instead of forcing parents to bear the lion's share of financial expenditures, we should include the following "players" at the finance table: parents, private insurance companies, school districts, state governments, federal Medical Assistance, federal legislation and private foundations. Though I am one who is supportive of funding what most are now calling "evidence-based" research, I am open to seeking funding for therapies/treatment that may work with some children and may be unavailing in others.

I seek your feedback and suggestions for improving this page. I can best be reached at drbilllong@gmail.com. Thank you for taking the time to read these pages and to commit yourself to understanding this most pressing issue. Your efforts to understand, serve and get to know those affected by autism spectrum disorders will be amply rewarded with wisdom and insight into your own life, as well as the sense that you are contributing to dealing justly and compassionately with one of the most perplexing health issues of our time.

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