BAC Rutland

Change.org is sponsoring a contest focused on ideas for political change. Within the “Education” category, the #1 idea is a series of demands for change entitled the Autism Reform Act of 2009. Sponsored by Michael Robinson of Wahiawa, HI, the list of demands is long and diverse. So far, it has received over 900 votes.

The idea of such a reform act sounds terrific – in theory. Robinson’s “act,” however, while it includes some critically important ideas, also seems to me to be very shaky indeed in some areas. Here is Robinson’s proposed “act” (along with my personal responses, in italics):

As a country we have watched Autism Spectrum Disorders grow in a devastating number. Over the last decade it has spiraled so quickly out of control that:

1. There must not just be one person but an ENTIRE U.S. OFFICE OF COMPLIANCE for Educating Children with Autism. Since I don’t know what the office would be complying WITH, it’s tough for me to support an office dedicated to such compliance. First, let’s see a flexible set of national guidelines for autistic education – and THEN let’s decide how to enforce them!
2. The use of Time Out Rooms, Corporal punishments, Restraints, and the high amount of Abuse must be monitored with severe penalties to states and fines or conviction of those that break such a REFORM Law. I absolutely agree!!
3. School Districts/States must each have an ” Office of Autism Education Compliance or be subject to loss of Federal Funding. I suppose the overall idea makes sense, depending upon how it’s implemented, but the idea of punishing our children because the district or state fails to comply with a law sounds wrongheaded to me.
4. Due Process Hearing Officers must NOT be employees of the state and shall be employed by the Federal Government ONLY. I have no idea why this would be important – readers may know more about this than I do.
5. Insurance companies MUST provide the Early Interventions such as ABA Discreet Trial (sic) at no cost to parents. Personally, I think discrete trials (sitting at a table and asking a child to perform a skill over and over again, and providing a reward when the skill is performed correctly) is an outmoded form of ABA. There are far more naturalistic and appropriate interventions available, even within ABA (not to mention many other effective forms of therapy which are specifically excluded here) – and I would vote against an act which insisted on implementing discrete trials with every child on the autism spectrum.
6. Protection and Advocacy MUST be funded properly to allow parents that need help get it without any more then a 15 day waiting period. Absolutely agree!
7. Grants for research, education, and non profit organizations for those with Autism Spectrum Disorders must be made in the amount of 5 billion dollars. Not sure where this number came from, and have no idea whether it’s appropriate.
8. Relief for parents who have paid out of pocket to educate their children must be made swiftly with 100% reimbursement. This makes no sense at all to me. Parents choose to pay out of pocket in all kinds of amounts for all kinds of reasons. Sometimes, parental choices are perfectly reasonable, as are the costs. Just as often, parents spend huge sums based on their own ideas of appropriate treatment, which may or may not have any basis in research. How would a district determine which parental choices should be reimbursable?
9. Behavior Intervention Plans must accompany all Individual Education Plans. I suppose this makes sense – couldn’t hurt, but I am not sure why it’s critically important for all children with autism.
10. Insurance companies must make available all resources for children and adults with Autism Spectrum Disorders including but not limited to any items deemed necessary by the physician for the treatment of metal toxicities and any other theraputic orders their physician may order. This is a tricky item, because it doesn’t state which types of physicians are covered (nor does it include practitioners who are not physicians). Some physicians recommend treatments which have not been fully researched; should those treatments also be reimbursed by insurance companies? If so, should the same options be open to all patients with every type of disorder? How much should insurance companies raise their rates on the basis of providing such wide-ranging availability of treatments?
11. The Autism Reform Act shall consider all Autism Spectrum Disorders including Aspergers. Sounds good.
12. This Reform Act must be ‘open’ for additions as needed and create a 12 parent panel to propose such additions. Flexiblity always makes sense. But given the incredible controversies within the autism community, I am not at all sure that a 12-parent-panel is likely to be representative. And even if it were – why would the panel include parents, but NOT adults with autism, teachers, therapists, and others who have an equal if not greater stake in autistic education?

In addition to the notes I offer above, I’d like to note that there are many other changes I’d like to see to the educational system as it relates to children with autism – none of which are included here. For example, there’s no mention whatever of inclusion in any form; of vocational education; of differentiated instruction; of access to non-academic school programs such as music, art or sports. There’s no mention of preparing children with autism for standardized testing (or of removing the requirement for standardized testing on the basis that individualized educational plans don’t allow preparation). In short, most of the issues that concern me, relative to public education and autism, are not included in this particular list.

I do applaud Mr. Robinson’s hard work – and his desire to see justice done on behalf of the autism community. And, of course, I applaud his desire to eradicate any form of corporal “behavior management” relative to any child! But if I were writing a reform act, it would look very different.

OK, I’ve taken my turn! Who’s next in expressing their perspective’s on Mr. Robinson’s recommended reforms for the future?