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.

Included in the economic bailout bill signed by President Bush last Friday, October 3, was a new law requiring equal coverage of mental and physical illnesses. Go here to read H.R. 1424, SEC. 512. MENTAL HEALTH PARITY, Subtitle B–Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008.

The October 5th New York Times quotes Dr. Steven E. Hyman, a former director of the National Institute of Mental Health, as saying that “it was impossible to justify insurance discrimination when an overwhelming body of scientific evidence showed that ‘mental illnesses represent real diseases of the brain.’” More specifically:

“Genetic mutations and unlucky combinations of normal genes contribute to the risk of autism and schizophrenia…..There is also strong evidence that people with schizophrenia have thinning of the gray matter in parts of the brain that permit us to control our thoughts and behavior.”

The new law will now make is easier for people to get treatment for conditions such as depression, autism, schizophrenia, eating disorders and alcohol and drug abuse. Employments and group health plans have set limits to hospital stays and to the number of outpatient visits for mental health treatments, and insurers have set higher co-payments and deductibles; under the new law, these will restrictions are eliminated.

As Regan noted, a “collateral benefit” to the passage of the bailout bill.

After their now-7-year-old son Ryan was diagnosed with autism 5 years ago, Lorri and Dan Unumb “they sold their house, downsized and sacrificed to cover costs,” an April 1st CNN story reports. Intensive behavior therapy for Ryan costs between $70,000 and $80,000 a year which is lawyer and law professor Lorri Unumb’s “entire salary.” The Unumbs attribute Ryan’s progress to all the therapy he has received. To help other families who could not afford the intensive therapy that Ryan has had, Lorri Unumb

…wrote a bill, recruited other parents to help her lobby state legislators, and two years later, got the bill passed. Known as Ryan’s Bill, it will go into effect as Ryan’s Law in July.

Ryan’s Law mandates that insurance companies provide up to $50,000 a year for behavioral therapy up to the age of 16. It also prohibits insurers from refusing other medical care to children because of their autism. It doesn’t, however, apply to people or companies who are self-insured, such as the Unumbs.

Unumb has been nominated for the Post and Courier’s Award for Public Service.

Behavior therapy has not been covered in the past because insurance companies have seen it as an “educational measure, not a medical one,” as indicated in other comments in the CNN storyfrom Susan Pisano of America’s Health Insurance Plans, a Washington-based association that represents health insurers:

“Traditionally those services have been provided through early intervention programs for children in the 0-3 age group, and by schools for children who are older.”

Pisano says the real issue is one of public policy. “We’re seeing around the country, as the number of children along the autism spectrum is increasing and as budgets are being cut back, we see a move to transfer responsibility for some of the services [from the government] to the health care system.”

But many, if not most, public school districts do not (and perhaps cannot) provide the types of services that parents seek. My son has received plenty of “watered down” therapy and teaching in public school programs who said they knew what they were doing (and clearly did not), and who were strapped for resources and trained staff. With only teaching from public school programs and without the kind of therapy that he responded to best—most privately paid for, with a lot of help from generous relatives—I don’t think my son would be doing as well as he is.

An issue alluded to by Pisano is: What is autism? How is it defined? That is, is autism a medical condition? And if it is, how does one argue that educational therapies can be considered “treatment”? Behavior therapy does not cure a child from autism but it can teach a child many skills.

By way of comparison: Families with a child with anorexia nervosa have faced similar battles with insurance companies to provide treatment. Anorexia is a serious, potentially fatal eating disorder and can require years of treatment. A 2006 story in Newsweek noted that it is precisely how anorexia is defined and understood—as a biological disorder (and more research points to genetic causes for anorexia) or (as the insurance companies would prefer to define it) as one that is caused by “environmental” factors—-that has been a crucial issue in getting insurance coverage for treatment.

Beyond the interpretation of the law, Blue Cross spokesman Thomas Rubino says that while there have been “a number of studies over the years that point to environmental and other factors [as causes of anorexia], there are no studies that have conclusively proven that [anorexia nervosa] is a biologically-based mental illness.”

Leading experts in the field—and even the federal government—however, clearly counter that claim. In a letter to the National Eating Disorders Association last month, Thomas Insel, the director of the National Institute of Mental Health, states that “anorexia nervosa is a brain disease” and while its “symptoms are behavioral” the illness “has a biological core.” The NIMH Web site also lists numerous studies that attest to that statement.

Similarly, there is currently no biological test for autism, which is diagnosed based on behaviors. And, as in treatment for eating disorders, there is a lot that families can do to help their children to get better, and there’s a huge need to make this known.

Update, 3.10pm: For a transcript of the Town Hall forum, you can go here.

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Today from 11 a.m. - 1 p.m., the NYU Child Study Center is holding an Online Town Hall on Children’s Mental Health. Details can be found here; registration starts at 9 a.m. today and commenters have contributed thoughts on what to address in the forum. How can we improve awareness and care for individuals with conditions like autism, Asperger’s Syndrome, bulimia, OCD, depression, and in ways that do not simply denounce and shame people? How can we advertise not fear, but hope?

Back in December, the New York University Child Study Center launched a public awareness advertisement campaign called “Ransom Notes,” in which. The campaign was pulled a few weeks later, in no small part due to the work of disability rights advocacy groups, parents, and many concerned individuals, who questioned the negative portrayal of autism and psychiatric disorders by the “Ransom Notes” campaign. On Tuesday, February 26, 2008 from 11 a.m. - 1 p.m., the NYU Child Study Center is holding an Online Town Hall on Children’s Mental Health. Details can be found here. How can we improve awareness and care of these issues, in ways that do not simply denounce and shame those with conditions like autism, Asperger’s Syndrome, bulimia, OCD, depression?