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    Health insurance coverage vs. science

    A device to help those with autism and other conditions communicate has been excluded — and then included, and then excluded again — from health insurance coverage in Washington. At issue is the process by which insurers decide what's covered and why, which doesn't always reflect scientific consensus.
    SpringBoard Plus, a communication device. (Prentke Romich Company)

    SpringBoard Plus, a communication device. (Prentke Romich Company) None

    Kaya Kesim is a little shy when meeting a stranger, retreating behind the legs of his mother, Katie Kesim. But no amount of gentle greeting, coaxing, or even clowning will elicit a reply from this brown-eyed 4-year-old, because Kaya doesn't talk.

    "After he turned one, he stopped talking altogether," says Kesim. Soon after, he was diagnosed with autism.

    But Kaya can communicate. He uses a speech-generating device, or "SGD," which at first glance looks like an Etch-a-Sketch, its gray touch screen framed by red plastic. He carries his SGD around and uses it to request snacks, sing songs, and play.

    "It has saved us a lot of temper tantrums," says Kesim. "He used to beat his head on the wall repeatedly out of a lot of frustration."

    Life without communication is unimaginable for most of us. SGDs offer a means of communication to those with neurological conditions such as cerebral palsy, amyotrophic lateral sclerosis (think Stephen Hawking), stroke, and autism, which is a developmental disorder marked by social and communication difficulties. In giving Kaya a voice, his mother says, the device has not only decreased his meltdowns, but it has increased his social inclusion at school and his language comprehension.

    Yet even as autism awareness in particular grows, some Washington health insurance companies have refused to cover SGD costs, calling the devices "investigational," which implies that they haven't been shown to work for autism. This riles parents and professionals alike.

    Marci Revelli, a speech language pathologist who works with many different patients at Children's Hospital in Seattle, says that these policies unfairly discriminate against those with autism. "Why are we just picking on this population?" she asks.

    Costly devices, reluctant insurers

    Kaya has one of the more flexible types of SGDs. It has a dynamic display and synthesizes speech sounds, rather than relying on pre-recorded sounds. The display shows pictures and their associated words: an apple for "to eat," a pointing finger for "you," two red strings criss-crossed in an "x" for "don't."

    Kaya presses these types of pictures to assemble a sentence, and then finishes with another button when he is ready to broadcast it to his communication partner. "I want bubbles," was one of the first things he "said." These types of devices have the greatest potential for growth, says Revelli. But they are also costly, ranging from $4,500 to $9,000.

    The Kesims received their device through Medicaid, but others insured through Regence Blue Shield, and until recently Premera Blue Cross, are not so fortunate.

    Regence's current policy says SGDs are investigational in cases of autism and mental retardation, arguing that the devices have not yet been scientifically demonstrated as effective for people with these conditions. In support of this, it cites a handful of studies.

    But the authors of those studies say that Regence got it wrong. "If they're quoting the [study] to say that it's investigational ... they're incorrect," says Diane Millar, of Radford University in Radford, Va. Her review article summarizing 23 studies is used by Regence to justify its policy.

    Millar says she was never contacted by Regence about her article, which she points out was "collateral" to the issue of whether SGDs were useful for people with autism. She was interested in whether using SGDs and other alternative communication methods would inhibit speech development, and her analysis indicated that they did not.

    As for their value to people with autism, Millar says the data are clear. "The benefits for communication, and for helping with challenging behaviors, [are] really obvious in the research at this point," she says. "It's very clear cut research with great outcomes."

    Even after receiving reproving letters from some of the scientists who did the studies cited in the policy, Regence is unmoved. The letters formed part of an appeal by a client in Snohomish County, whose claim for an SGD was rejected by Regence. Lew Golinker, a lawyer in Ithaca, NY, filed the appeal, arguing that Regence misread and missed the relevant research, and that it is illegal to discriminate based on a person's diagnosis in Washington.

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    Posted Tue, Jul 1, 10:19 a.m. Inappropriate

    "Some abstract body of research": "The focus on literature by insurance companies is misguided"...Um, yeah, God forbid insurance companies attempt to validate the legitimacy of the procedures and therapies they cover, especially when health care providers have an obvious financial incentive to provide them. Taking issue with an insurance company's interpretation of the science is one thing, but throwing science under the bus in blind favor of practitioner judgement has time and time again proven detrimental to patients.

    "What matters is the person sitting in front of you, not some abstract body of research." And by that logic, the world is probably FLAT. I mean, have any of you actually seen the curvature of the earth? Probably not, but we have typically rid ourselves of the notion that the earth is flat thanks in large part to "some abstract body of research" that informs us otherwise. Trashing science and the research that supports it in favor of anecdote and conventional wisdom is a tactic I would expect of the Bush administration in criticising the legitimacy of global warming. Finding the same tactic in a crosscut article is simply disappointing...

    Posted Wed, Jul 2, 12:17 a.m. Inappropriate

    RE: "Some abstract body of research": The comment is not about "throwing science under the bus" but whether there is room for clinical opinion--in addition to scientific literature--in making coverage decisions. Before requesting coverage for an SGD from their insurer, these people will have already tried and even made progress with the device (as measured by evaluations by speech pathologists, not anecdote). It's fair to ask: if the research showed that these devices only worked in one in a million cases, should insurance cover them for someone who demonstrates that they are that one in a million?

    Posted Mon, Jul 7, 10:52 a.m. Inappropriate

    Seattle Times article on the Health Technology Assessment board: Published today: an article on the state's HTA board, which makes such decisions for state and public employees and people on worker's comp and Medicaid.

    Posted Mon, Jul 7, 11:22 a.m. Inappropriate

    Are SGDs Covered by Washington State?: So does the State's health plan cover SGDs? What about federal programs like Medicare?


    Posted Mon, Jul 7, 4:39 p.m. Inappropriate

    Very accurate description of very frustrating situation: As if people with autism and their families need any more challenges than they already have, Ms. Solis describes one more major battle many of these families must wage. Speech generating devices have been used successfully by non-speaking individuals with autism for several years. The use of SGDs can assist in reducing the individual's problem behaviors (which are frequently the result of an inability to communicate), support his safety and well-being, nurture social closeness, foster independence and enable the individual to develop communication and language not otherwise available to non-speaking individuals. Lastly, and most critically, an SGD can provide an individual access to one of the most basic of human rights - the right to express oneself.
    So what's the problem? In this case, it appears that decisions are being made based upon a person's diagnosis. This is truly discrimanatory and only perpetrates the barriors which exist for people with disabilities.
    Additionally, this exclusion policy may save a penny today but will ultimately cost society far more. All of us working with individuals with autism regularly have seen instances of unreported abuse, critical medical conditions left untreated, and normal cognitive potential buried by the lack of ability to communicate.
    SGDs are not a "cure all" for autism, just as a wheelchair will not allow a person without legs to walk. However, individuals with autism who are never given a tool with which to communicate may forever be trapped by their diagnosis.
    I am a speech pathologist and have been involved in recommending SGDs for people with communication disorders for many years. These have been funded through private and public insurance, school districts, charitable organizations and out of pocket. I, along with many families and collegues, have had to fight many battles to get these devices in the hands of people who need them. Through these years, I have never seen any of our battles chronicled as concisely as this one-thanks to this excellent article by Michele Solis.
    One in 150 children are diagnosed with autism. Of those children, it is estimated that 1/3 to 1/2 will never develop functional speech. The chances are very good that the readers of this article know someone with autism or know a family touched by autism. There is no stronger voice than public opinion. The reader now has accurate information about a significant injustice happening in your community and possibly to your neighbors or friends. Unlike these individuals with autism, we can speak. Let's not let this absurd situation continue.

    Posted Wed, Jul 9, 2:19 p.m. Inappropriate

    RE: Are SGDs Covered by Washington State?: Medicare covers them. As for state employees, it depends on the plan that they have. Some don't have exclusions, so it's likely they are covered. One state plan run by Aetna had an exclusion, which I understand is in the process of being removed.

    Posted Fri, Sep 5, 11:17 p.m. Inappropriate

    update on Regence policy: Regence has changed its policy regarding coverage of speech-generating devices (SGDs), effective September 1, 2008. They have dropped their assertion that these devices are "investigational" in people with autism and mental retardation, which presumably opens the door to coverage in these cases.

    The updated policy can be found here.

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