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.

“I can’t believe,” said Jill last night, ”that in a month the kids will go off to school in the morning, and then-”

Yes? Raunchy day-long fun like we used to have?

“-I won’t have the house to myself,” she said.

At 11:44 a.m. last Wednesday, my phone rang and my boss asked me to a conference room. In there I found him in front of a yellow legal pad scribbled with numbers, and next to him a woman I did not know.

“Jeff,” he said, ”do you know ——? From HR?” The next 20 minutes constituted a scene staged across the country, in near-record numbers, every working day. Last day at my job, and my last day still working to receive insurance benefits, is 5/22. Benefits and several and such will continue for a while. Then unemployment and COBRA — with its attendant lessened pinch from the Stimulus plan — will continue.

Alex’s autism will continue longer. I actually dread being home for months alone with Jill during the day (ha ha — sort of) more than I dread the extra time I might have to spend caring for Alex. In fact, a few extra hours during the week with the boys would be welcome before they become teenagers and hate me.

“You’re very calm about this,” my former (also recently laid off) boss said to me on the phone this morning, “and that worries me.”

Me too. I’m usually jubilant when I leave a job. Now I just have this low humming dread. Alex has no immediate medical needs; we’re even trying to get him off Topomax. Years of freelance writing and marketing books have also conditioned me to stuff envelopes against the enormous odds, but the odds these days of getting a full-time job seem beyond enormous.

Why not jubilant? The last time I hit the employment silk, in January of 1998, there was no Alex. Now there is. This crisis has at last trickled down to me, a low-paid publishing professional, and I have no doubt it’ll continue through 2009 to trickle down to the agencies that provide Alex’s services. Not to mention that it’s good to have insurance and a steady income when your child is autistic. It just quiets the hum.

A Google search for “parents,” “laid off” and “autism” turned up little, but you can check into autism meet-up groups for your city at http://autism.meetup.com/cities/us/. I bet you won’t be in a group long before you run into another member who’s been canned.

Image: bestrecessionever.com

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.

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?

It is a Sunday (though I’ve kind of lost track of time, being away from home in California) and Jim and I are off from work, and Charlie from school. So we’re not having our usual rush and worry to get home in time to meet the schoolbus (though Charlie seeming to have more away from home holiday anxiety than ever before has meant there’s been plenty to keep us occupied). As Kajuana Ezell, whose 17-year-old son is autistic and who works as a senior administrative assistant for Prudential Financial, Inc., in Hartford, says about being the working mother of a special needs child:

“We want a career just like everyone……It’s just that our 100 percent may not be the standard 8 to 5. Companies that can’t give the flexibility, or allow us career opportunities, companies that aren’t open to change, we can’t work there.”

Today’s Boston Globe notes that some companies—-who’ve started to cover more services and therapies for those with disabilities—have been offering financial planning and parenting forums (via websites and conference calls, as well as live seminars) about special needs children.

Lost talent is one risk for inflexible companies. In nearly a quarter of families caring for children with special needs, one or both parents wind up reducing their work hours or quitting their jobs, according to government surveys.

One challenge employers face in responding is the spectrum of different conditions in the special needs community, from fragile health to behavioral disorders. As is often the case in the work-life arena, one size does not fit all. That’s why assessing employee needs regularly, and tailoring supports accordingly, is crucial.

I have to second Ezell’s point that about working 100 percent, just not in that “standard 8 to 5.” Parents of special needs kids talk about having to be “on” 24/7, and that can mean that we know how to be really flexible about getting things done, 24/7, too.

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?

Via Cynthia Samuels On Special Education blog at EdWeek, I found this Autism Legislation Database on the National Conference of States Legislatures website. You can also access a state-by-state database on autism legislation here.

An article in the December Pediatrics examines the health care experiences of families with autistic children in the US. Researchers looked at a nationally representative 2005-06 survey of nearly 40,000 children with special health care needs; the children’s needs were “physical and mental,” and required medical care that was more than usual, yesterday’s Associated Press (via AZ Central) reports. 2,088 children of those children had autism.

The article is entitled A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005–2006, by Michael D. Kogan, Bonnie B. Strickland, Stephen J. Blumberg, Gopal K. Singh, James M. Perrin, Peter C. van Dyck. The Associated Press notes that

Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids’ health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found.

Jacquie Mace, the mother of a 12-year-old autistic son, Austin, is quoted as saying that she spends “‘easily $15,000 to $20,000 out of pocket’” for her son; she’s still “working to pay off a $7,000 bill” for dental work for Austin, who required sedation and hospitalization as he is not able to sit in the dentist’s chair.

The topic of the “financial strain” on families to take care of an autistic child or relative is frequently noted, and perhaps even more in a time of economic uncertainty. A 2006 book, Understanding Autism: From Basic Neuroscience to Treatment by Michael Ganz, Adjunct Assistant Professor of Society, Human Development, and Health at the Harvard School of Public Health, estimated that it costs $32 million to take care of an autistic person over the course of her or his lifetime; some $29,000 plus for “direct medical costs, such as physician and outpatient services, prescription medication, and behavioral therapies” for an autistic person per year; some $38,000 to $43,000 for “direct non-medical costs, such as special education, camps, and child care” per year.

Those are big, and scary numbers. We’ve certainly spent a lot on Charlie’s education and medical needs. The dentist who Charlie’s grown familiar with is not covered by our insurance plan. When Charlie was younger, he did a lot of in-home ABA, verbal behavior, and speech therapy and we’ve always paid babysitters extra. And then there’s the lawyer, and more, and the reality that the jobs that Charlie will work at when he’s older are most likely not going to be high-paying.

And yet: If Charlie had not been autistic, I suspect there’d still have been plenty of “costs,” from childcare to camp to college to who knows what. According to 2007 USDA figures on Expeditures on Children by Families, families spend almost $300,000 from when a child is born to when he or she turns 17.

Talk about costs, while inevitable, can veer into talking about the “burden” of taking care of a disabled child, of a child who has “extra” needs and who may need care and support for much longer than a child who’s not disabled. While we’ve had our full share of difficult moments in trying to do our best by Charlie, taking care of him’s no burden. Sure we’ve had to give some things up, but the gains continue to outweigh any losses. We’ve gained much much more than we’ve ever spent, in dollars or in energy, in being Charlie’s parents—-life with Charlie is, simply, priceless.

In many states (such as Virginia), families of autistic children have been seeking legislation to provide for insurance coverage for treatment (usually ABA therapy) for their children. A recent decision involving insurance coverage for eating disorders in New Jersey might be of interest: As reported in today’s Star-Ledger, Horison—the state’s largest health insurer—has agreed to cover claims stemming from eating disorders. Some 500 patients will receive $1.2 million when their previously denied claims are reprocessed; the decision settled a class action lawsuit brought by parents of children with anorexia.

In a statement, Horizon spokesman Tom Rubino said the company “believes the settlement is in the best interest of all the parties involved and in line with the direction of federal parity for mental health.”

Horizon said some of its policies provide coverage for eating disorders such as anorexia and bulimia but that treatment benefits were limited because they were classified as nonbiological in nature.

“New Jersey law does not identify anorexia and bulimia as biologically based mental illnesses requiring parity benefits,” the statement noted.

Under the terms of the agreement, Horizon will not admit any liability but will provide “parity treatment to eating disorder claims in the future for all current members who are fully insured,” the statement added.

At issue in particular is a debate familiar in discussions about autism: Is–can– anorexia to be defined as a biologically-based disorder? As noted in a previous post on insurance coverage for autism and also anorexia, a 2006 story in Newsweek reported that it’s precisely how anorexia is defined and understood—-as a biological rather than a psychological disorder that has been a crucial issue in getting insurance coverage for treatment. Insurance companies would prefer to define anorexia as caused by “environmental” factors (due to issues in the family, for instance). In the past years, as in the case of autism, there’s been more pointing to genetic causes for anorexia; for a medical and neurological basis for the condition.