Say you want to go up against your school district to ensure a fair and appropriate education for your child who has a disability. The school isn’t providing related services such as speech or physical therapy listed on the IEP (individualized education program). Or your child isn’t receiving modifications and adaptations for testing, or specially designed instruction. There are lots of reasons a parent might file an IDEA lawsuit.

Photo courtesy of methTICALman (flickr.com)

Now say you have to pay for expert witness testimony during a court hearing in order to make your case. Before the 2006 Supreme Court decision, Arlington vs. Murphy, you could recover those fees if you prevailed as part of your costs. But the 6-3 pro-school district decision said, in part, that the term “costs” does not include expert fees. (Read more analysis here.)

As the National Autism Association points out, school districts can pay these expenses using taxpayer dollars while many parents can’t hope to match those resources.  A copy of the bill can be found at www.congress.gov, in the box that says Search Bill Summary and Status by typing “IDEA Fairness”  and then clicking on search.  This will take you to H.R. 2740.

Now click here to sign a petition in support of the bill. Because it’s hard enough having to go to court to fight for your child’s right to an appropriate education. You shouldn’t have to go broke doing so — or decide you can’t afford to go to court in the first place.

New Jersey legislators are proposing a bill that would make it mandatory for insurance companies to cover treatments for individuals with autism. New York has already proposed reforms that would require private health insurance companies to pay for screening, diagnosis, testing and treatment, up to $36,000 a year. Connecticut has already passed legislation.

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Photo courtesy of jimbowen030 (flickr.com)

NPR just ran an interview with Karl Taro Greenfeld that discusses his new book, “Boy Alone: A Brother’s Memoir.” Of particular interest to me are the comments that are posted. Most are supportive; several are sharply critical of Greenfeld for what they see as his selfishness and lack of empathy. I can’t help thinking what Ned might say if he writes a memoir one day. Will he say with resentment that his childhood was absorbed by a family that revolved only around Alex?

I found out about the interview (and book) from an email sent by someone at AHRC, the agency that deals out many services to Alex. The woman who runs their sib shops, which Ned attends (and seems to really like going to). I can’t say definitely this will be enough for Ned, but it’s a start. I’m glad they exist; I’m glad they exist for Ned. I think Karl Greenfeld’s life must have been unimaginably difficult, and I think he has written a brave, unflinching memoir that will be difficult for me to read. But it is now on my list.

You know what I wish? I wish things were a little easier. I wish there were more tax exemptions and credits for special therapies and childcare. Our childcare costs are lower than they used to be, thanks to respite through our Medicaid Waiver, but they’re still higher than those for families with typically developing kids. Alex is almost 11 and can’t be left alone. Ever.

I wish those caring for a family member with an atypical situation were entitled to more paid leave. In a country where people without kids bitch about parental leave and co-workers who take time off to care for sick kids, it’s not going to happen. But I can still dream, can’t I?

When it comes to jury duty, I wish exemptions were easier to get. Reader Bonnie Sayers (see first comment) wrote about her experiences with her local court system in California, which seemed needlessly harsh to me. I am indeed lucky to live in New York, where I’ve gotten about a decade’s worth of deferrals because I’m the sole caretaker of school-age kids.

We all owe it to our community to participate, but the fact is, we can’t all do it all the time. And the system isn’t going to collapse just because one segment of the population cannot sit on a jury for the 10- or 15-year period when their kids require a level of care that’s beyond what most parents of typically developing children provide. I expect to serve on a jury again one day - when Alex has more support and programming for a longer day.

Kathye Schattner, a Kentucky resident, started a website detailing her attempts to get her state legislature to enact more family-friendly jury policies. Check out examples of families who have been affected by harsh rulings - including families who have children with autism.

Brain,Child Magazine ran a piece a few years ago by a Colorado lawyer, Kathy Plonsky, who thoughtfully defended these policies in a piece entitled A Jury of Her Peers. I remember reading this piece and thinking it was well-reasoned, but since then I’ve come to feel it’s an overly literal interpretation of the law. I don’t see why the incident in Plonsky’s own life that infused her with a new empathy for the defendant couldn’t as easily have been recalled five, ten or even 20 years later, rather than a few days. The experience of parenthood is not fleeting - the memories of outstanding parent-child events are usually seared into your brain, not forgotten like a mildly entertaining movie.

Yes, we’re entitled to a jury of our peers, but doesn’t that just mean twelve ordinary commoners instead of one king presiding over your life? Jeff served on a jury, and if you’re looking for a precise peer of an Hispanic drug dealer, he’s probably not the best match.

Our situation is not that different from anyone caring for a family member who has unusual needs - Alzheimer’s, autism, a brand-new baby. They all require an extreme level of care. But some of us will be asked to provide this care for a much longer amount of time.

Happy 2009!

We’re leaving tonight on the red-eye to go back from the Bay Area to New Jersey so, in the interest of being able to spend more time in the California sunshine with my guys and my parents, and since it is, indeed, 2009, a few more highlights from 2008.

August means one thing in my household—-two weeks at the beach, at the Jersey Shore. Not surprisingly, it was still impossible to avoid talk about vaccines. A new clinical trial of the GFCF diet was announced. While people have strong disagreements about the “right” of parents to vaccinate or not, everyone agreed that the use of “retard” in the movie Tropic Thunder was unncessary.

Charlie started middle school in September and, by October, he was deep into middle school blues, and Jim and I found ourselves back into the old familiar advocacy mode, including meetings with teachers present and past, Charlie’s case manager, ABA consultants, school district administrators (but not, yet, “legal counsel” of the sort this family in Montgomery County (Virginia) has had to take).

Also in September: A 13-year-old autistic boy treaded water for 15 hours off the coast of Volusia County in Florida, until he was found the next day.

Another study showed that the MMR vaccine does not cause autism.

And, with Election Day nearing, the choice of Alaska governor Sarah Palin—whose youngest son, Trig, has Down Syndrome—-as Senator John McCain’s running mate got the (Special Needs) Mommy Wars going again.

In October, I (former warrior mom that I am) was on a Science Blogs book club panel writing about a newly published book, I get a lot of hate mail”: Autism’s False Prophets by Paul Offit. (And I’ve not been feeling that I need beware Jenny McCarthy and her so-called angry mom-mob; I know that someone’s watching over me.)

More to the point than “debates” about vaccines and autism was the passage of the mental health parity bill.

And then, in the middle of October, was the McCain-Obama debate in which McCain apparently confused Down Syndrome and autism, and after which I was interviwed on Newsweek about the candidates.

Around the same time, Denis Leary did a Michael Savage, Charlie seemed to grow taller every week, and David Kirby exonerated thimerosal, and as quickly said he hadn’t.

November brought a new theory about autism and genetics, another suggestion for identifying autism in infants (”strange play“), and more speculation about autism and schizophrenia as the same. A mandatory autism registry was proposed in New Jersey; researchers began to look for autism’s causes at home; and I attended the November 21st meeting of the Interagency Autism Coordinating Committee (IACC), at which the draft of the Strategic Plan was discussed.

December, this past month, began with Autism Twitter Day, organized by Bonnie Sayers; an exchange about some dangerous ideas about autism, and some events concerning autistic rights, from an autistic girl in Wisconsin becoming a Brownie after being asked not to return to a special needs Brownie troop, to calls for the inclusion of autistic individuals on the boards of autism organizations. (This letter states why.)

And some final thoughts as 2008 ended: What would you like to see in autism legislation? (Something besides insurance coverage for specific therapies.) And isn’t it time for vaccine talk detox? (Yes.)

So farewell to 2008 and onward into the new year, which I suspect holds some more changes all the time for Charlie, and which holds a big one for me, too—-but more on that tomorrow, once we’re back home in Jersey.

A constant theme in 2008 was the rebranding of autism, as Orac at Respectful Insolence referred to how the likes of David Kirby have been constantly saying that “autism isn’t autism”—-it’s “mercury poisoning,” “vaccine-aggravated mitochondrial disorder,” “mercury-induced neurological disorder,” etc., etc.

(April being Autism Awareness Month—-does your child know about this—let’s not get into what such “rebranding” would do to the month…….)

The notorious Judge Rotenburg Center in Canton, Massachusetts uses electroshock “treatment” on some its residents, some of whom are autistic. In April, one of its staff was charged with rape, assault, and battery of another staff member—-more about the very, very questionable practices at the JRC is noted here.

Dr. Andrew Wakefield can be said to be the figure who set in motion the claims of a link between the MMR vaccine and autism. He is currently being charged with alleged violations of medical ethics by the General Medical Council in the UK. At a hearing in April, Dr. Wakefield noted that he is “‘perfectly willing to accept [his] understanding was wrong.’”—- Also on the legal front: 2008 saw a version of “vaccine litigation subpoenagate,” with Neurodiversity blogger Kathleen Seidel successfully quashing a subpoena issued to her by vaccine litigation lawyer Clifford Shoemaker, and Dr. Marie McCormick also issued a subpoena.

More about the presidential candidates’ views on autism became apparent, especially those of Barack Obama and Hillary Clinton, and, yes, on vaccines—-and as to why vaccines, and topics like the so-called “autism epidemic,” continue to be discussed, seems to be a sign of at least a little paranoia and politicking……….

I would say I wrote a lot, and probably too much, about Jenny McCarthy in 2008 (and writing less about her, and about the whole vaccine-autism idea, is making its way higher and higher up onto my list of New Year’s resolutions).

Nonetheless, vaccines dominated discussions about autism in March in the wake of announcements about the case of Hannah Poling, whose “pre-existing mitochondrial disorder…. was ‘aggravated’ by her shots” and led to symptoms of autism, as conceded by the U.S. Federal Court of Claims. A lot of debate followed about the Vaccine Court, to the point of general vaccine fixation.

Some mentions of birdsong and fish, and then, in the course of yet again saying it’ not the vaccines, some thoughts about why this is such a personal matter.

Also: Insurance coverage for autism “treatment” was regularly mentioned in 2008 and legislation put forward in many states: For what in particular? For how long?

And: Does your child know that she or he is autistic?

Change.org has been running a competition to vote on the top Ideas for Change in America. The competition ends on December 31st—-yes, that’s Wednesday—and here are three ideas that I think can clearly make a difference in the lives of autistic individuals:

Fully Fund Medicaid Waivers for the Developmentally Disabled

Replace No Child Left Behind With a Strong Education Policy

Independence and Services for Disabilities and Autism

The top 10 ideas will be announced in January.

(For discussion about the idea about the “Autism Reform Act,” see this post on autism legislation.)

Discussion continues about autism legislation, and is going to continue here in the US under a new administration. One piece of federal autism legislation that has been passed here is the 2006 Combating Autism Act (CAA), under which the Interagency Autism Coordinating Committee (IACC) was charged to create a Strategic Plan for research in autism spectrum disorders. (Regarding how the CAA was voted on and passed, and on its unfortunate name, go here.)

Over the past year-plus, the IACC has been developing a draft of the Strategic Plan. This draft was reviewed at the IACC’s November 21st meeting and, as review of the plan was not completed, the IACC met again on December 12th to continue review of the draft Strategic Plan and, per the agenda, to discuss cost estimates.

The IACC will be meeting next on January 14th (and go here for how to listen in virtually, via the web or conference call). This meeting will be to continue the review of the draft Strategic Plan, and to make budget recommendations and finalize the plan.  There’s a report about the December 12th meeting on the Autism Speaks website which notes that 38 research initiatives were approved, and that the budget for these will exceed the amounts authorized by the CAA in a certain period of years. The IACC Strategic Plan recommends that more than $1 billion be spent on research objectives.

I was able to listen to some but not to all of the December 12th meeting. Autism Speaks lists 10 of the 38 research objectives, which include (with my commentary on some initiatives and some emphases in italics)

Develop at least one new diagnostic instrument (briefer, less time intensive); [Interesting I think, recalling the two-day-plus process---ordeal---of having Charlie evaluated by a diagnostic team in Minneapolis; might something get missed, though, if the process is hurried up too much?]

Validate a panel of biomarkers that separately, or in combination of behavioral measures, accurately identify, one or more subtypes of children at risk for developing ASD; [At the November 21st and December 12th meetings, some members of the IACC brought up the need for such "biomarkers" repeatedly, as well as the notion of "subtypes" of children who be "at risk" or susceptible to being diagnosed with autism.]

Establish an international network of brain and other tissue acquisition sites with standardized protocols;

Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical and developmental profiles of children, youths and adults with ASD change over time compared to typically developing individuals by 2020;

Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 sequencing studies to examine more than 50 candidate genes by 2011;

Study the effect of vaccines, vaccine components and multiple vaccine administration in autism causation and severity through a variety of approaches including cell and animal studies and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines; [Again, the mention of "subtypes" of individuals with certain susceptibilities, such as the so-to-speak "subpopulation of mitochondrial autism."]

Determine design and feasibility of addressing different health outcomes in vaccinated, unvaccinated and alternatively-vaccinated groups; [Yes, another mention of vaccines; this study being the long-called for study of various "health outcomes" in vaccinated vs. unvaccinated, and not "alternatively-vaccinated groups"---those vaccinated under an "alternate schedule"?]

Conduct a multi-site study of the subsequent pregnancies of 1000 women with a child with ASD to assess the impact of environmental factors by 2014; [Sounds like the UC Davis M.I.N.D. Institute MARBLES study.]

Standardize and validate at least 20 robust model systems (cellular and/or animal) that replicate features of ASD and will allow identification of specific molecular targets or neural circuits amenable to existing or new interventions; [But are "features of ASD" as seen in an animal (such as a mouse) model equivalent to features of ASD in human?]

Test the efficacy of 11 evidence-based services for people with ASD in community settings by 2015.[Would like to know about the what and where of these.]

And if the full $1 billion worth of research initiatives are not funded, what studies might be the first to be tabled…………….

You could call 2008 a year of autism legislation, with bills proposed and (in Arizona, Connecticut, Florida, Louisiana, Pennsylvania, South Carolina and Texas) passed for insurance coverage for children with autism (of varying ages; for instance, Texas’ House Bill 1919 calls for coverage for autistic children between two and six; efforts are being made to pass House Bill 451, to require certain insurance plans coverage to autistic individuals up to age 18). Via the National Council of State Legislatures, you can access the NCSL Autism Legislation Database, which provides information about legislation in different states. Autism Bulletin also has a map of autism legislation, and here are various posts I’ve written on legislation concerning autism and disabilities. Military families are lobbying to get treatment for their autistic children under the extended care arm of the federal healthcare program TRICARE, as noted in today’s US News and World Report.

But what besides health insurance for autism treatment (which tends to be for Applied Behavior Analysis, or ABA), would you like to see in autism legislation?

This week, the Autistic Self-Advocacy Network has been invited to give input to the Office of President-elect Obama at two meetings relating to disability policy. The first meeting will focus specifically on autism policy issues and the second on health care policy from the disability perspective. ASAN and other disability organizations will be present, and you can email ASAN’s president, Ari Ne’eman, with your concerns and ideas.

Over at Change.org’s Ideas for Change for America page, the top-ranked idea in the education category is about the “Autism Reform Act of 2009.” This proposed Act was posted by Michael Robinson of Wahiawa, HI and from its first sentence, suggests an air of more than emergency:

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:

with the 12 points of the “Autism Reform Act” following. Lisa Jo Rudy has offered commentary on this act over at About.com and I’m borrowing her format, quoting the text of the Act and including my comments in italics:

1.) There must not just be one person but an ENTIRE U.S. OFFICE OF COMPLIANCE for Educating Children with Autism. Why “compliance” in particular for this office? Where has (has it?) such an office ever been mentioned before?

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. Ok, but I’d suggest that the use of these—certainly corporal punishment and restraints—should not be allowed at all. There are certainly too many cases of abuse, physical and otherwise, that get reported involving autistic persons and much more needs to be done to promote and train staff in other practices.

3.) School Districts/States must each have an ” Office of Autism Education Compliance or be subject to loss of Federal Funding. Again, “compliance” needs to be explained. And what is meant by “autism education”?

4.) Due Process Hearing Officers must NOT be employees of the state and shall be employed by the Federal Government ONLY. Lisa expressed some puzzlement at this. I’m also wondering at the emphasis in this Act on who is employed by whom and, again, on compliance.

5.) Insurance companies MUST provide the Early Interventions such as ABA Discreet [sic] Trial at no cost to parents. As noted above, while early intervention is needed, autistic children often need therapies and services for many more years. Further, ABA/Discrete Trial Teaching is only one type of teaching for autistic individuals and others also need to be considered, according to each individual’s needs.

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. Certainly parents with a just-diagnosed child or with a child having many difficulties at school need their concerns addressed as quickly as possible. Who would such “protection” and “advocacy” come from?

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.Why this particular figure of mondy and what kinds of grants are being called for here>

8.) Relief for parents who have paid out of pocket to educate their children must be made swiftly with 100% reimbursement. Who is this reimubursement to come from and on what grounds? Only for educational services? How much of this “relief” will be compensated? (And there may be some concerns in the wake of stories such as this.)

9.) Behavior Intervention Plans must accompany all Individual Education Plans.My son’s IEPs have always included such Behavior Intervention Plans (BIP)—-parents have the right to ask for such in a child’s IEP, and to make sure that the BIP is created under IDEA regulations.

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 [sic]orders their physician may order. Interesting to find mention of “metal toxicities” and of biomedical/alternative medicine theories about autism in the Act. Is there an intent to try to have such treatments (which are not supported by the scientific evidence) covered by insurance?

11.) The Autism Reform Act shall consider all Autism Spectrum Disorders including Aspergers. Ok; the possible revisions to the DSM might also be taken into account.

12.) This Reform Act must be ‘open’ for additions as needed and create a 12 parent panel to propose such additions.Definitely seems essential to keep this Act as “live” and “in process” as possible—-why as panel of 12 parents? Who would choose these parents? What about teachers, scientists, and others?

What you think about the “Autism Reform Act”—–again, what do you think legislation about autism should include?

With legislation for insurance for “autism treatment” under consideration around the country (in Virginia, in Florida, in Illinois), a question: The “treatment” called for is principally in the form of Applied Behavior Analysis (ABA). What other treatments might you wish to see covered and how might they be justified as the sort of treatment and therapy that health insurance must provide for?