What’s Medically Necessary?
July 7, 2008 by Kristina Chew, PhD
Filed under Health
If you’re interested in listening in on a meeting of the Strategic Plan Workgroup of the Interagency Autism Coordinating Committee (IACC) under the Combating Autism Act of 2006 (P.L. 109-416), go to the end of this post.
For the past several months, insurance—as in having insurance companies pay for treatments for autistic children—-has been a regular topic; a number of states have passed legislation (or not passed legislation) requiring that private insurance companies provide for treatment. A July 6th LA Times entitled Who pays for autism treatment links the “explosion in the number of children diagnosed” with autism with a battle among “parents, insurers and state and private institutions” over coverage:
“It’s health plans versus schools versus regional centers,” said Diane Anand, executive director of the Lanterman Regional Center in Los Angeles, one of 21 state-funded centers that serve the developmentally disabled. “It’s going to take years to sort this out.”
……..…[Treatment] costs money — as much as $70,000 a year per child. The state spent $320 million last year, up from $50 million a decade earlier. Nationwide, the tab is $90 billion annually, a figure expected to double in a decade. [See About.com about the price tag of treatment for autism.]
Parents, in growing numbers, say insurers aren’t doing their part. Proposed class-action lawsuits — including one filed in April by Arce against Kaiser and another filed late last month against Anthem Blue Cross — allege that California’s largest health plans are shirking their duties to autistic members.
Health plans say they cover medically necessary care. The problem, they say, is that parents ask for treatment that insurers deem experimental, or for basic skills training that has long been provided by state-funded regional centers and schools.
“Treatment” in the article refers specially to intensive behavioral therapy in the form of Applied Behavior Analysis (ABA). ABA has been a highly effective teaching methodology for my son, with his particular mix of communication and speech impairments, cognitive disability and abilities, and behaviors. The LA Times somewhat oversimplifies ABA as “teaching such skills as dressing.” My son Charlie did receive 40 hours/week of ABA in a home setting when he was 2-3 years old; since he was about 4 1/2, he has mostly received ABA in public school classrooms, in which ABA has been integrated in all aspects of teaching. He has also, at some times, had about 6 hours/week of ABA at home (discontinued as of February of this year).
In other words, for Charlie, ABA has primarily been delivered in an educational setting. Nonetheless, if someone were to ask me, was the ABA “medically necessary” for Charlie—-and whether or not “treatment” is “medically necessary” is, the LA Times article notes, the very criteria that insurance companies are saying they can cover—-I would say, yes. Yes, ABA was and is “medically necessary” because ABA has been essential to helping Charlie manage and control highly dangerous, self-injurious behavior (frequent head-banging in previous years). ABA has helped Charlie to eat new and different foods; I think he was only sick for a day or two (and on the weekends) last year because he has a healthy and varied diet. ABA also helped Charlie learn to ride a bike and swim, and this physical exercise has had invaluable health benefits. It’s made him stronger (and more muscular), and this has helped his coordination and also his speech; it’s helped him to maintain a healthy weight (Charlie takes Risperdal, which initially significantly increased his appetite).
I recognize that there are specific definitions and meanings attributed to what is “medically necessary.” In the case of autism—in our experience—-”treatment” can be “medically necessary” and delivered in educational formats. Charlie will always be autistic, but how far he’s come, and how, as he gets older, he rises to meet demands that Jim and I would have been wary of asking of him even recently. In the past, a long weekend—for the holidays—has been our undoing, but Charlie got through the four days of “no school” fine; he slept in, hung around in his bedroom, stood behind Jim who was working at his computer and gave the occasional hug and request for his dad to do something with him, folded laundry with me and did some vacuuming and waited around at my office (not Charlie’s favorite place) as I did last-minute xeroxing for my summer school course on Sunday evening.
Charlie’s an earnest, loving boy today and able to show this to us. He’s able to live at home with us (so far). He gets mad and yells when things don’t turn out his way (as when, on Sunday night, we got him a hamburger to go instead of sitting down at the hamburger stand, as Charlie prefers); he calms down and accepts reality. He makes life easier, and better, for us with each passing day.
I know there’s no way to quantify or explain this but, life with Charlie just makes things so much better for Jim and me and (I think) a couple other people on this planet—-I am healthier, and indeed better and hopefully wise, thanks to Charlie.
About the IACC meeting:There will be a meeting of the Strategic Plan Workgroup of the Interagency Autism Coordinating Committee (IACC) under the Combating Autism Act of 2006 (P.L. 109-416) taking place on July 8th, 2008 from 10:00 a.m. to 1:00 p.m. EST. The meeting will review and comment on the draft IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research. The meeting will be an online conference call with web-based presentation. Audio of this workgroup meeting will be accessible to the public via a teleconference phone link, and web-based access to information will be displayed at the meeting via computer/projector. To access the meeting, please visit the following web address:https://www1.gotomeeting.com/register/250792981
The call-in phone number is: (888) 455-2920. The pass-code necessary to access the meeting is 3857872. The contact person for this meeting is:
Azik Schwechter, Ph.D.
National Institute of Mental Health, NIH
6001 Executive Boulevard, Room 8203a, MSC 9657 Rockville, MD 20852
(301) 443-7613
schwechtera@mail.nih.gov
This workgroup meeting will be open to the public through a conference call phone number and a web presentation tool on the Internet. Individuals who participate using these electronic services and need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request at least 96 hours prior to the meeting. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. There may be an opportunity for members of the public to submit written comments during the workgroup meeting through the web presentation tool. Submitted comments will be reviewed after the meeting.
“life with Charlie just makes things so much better for Jim and me and (I think) a couple other people on this planet”
My sense is that he’s making life better for a long list of people, anyone who reads Autism Vox. You write these wonderful, insightful posts…I know I’m benefiting from them.
Hello friends -
The insurance companies see our children as black holes; their condition, while clearly medical, rarely results in a recovery and consequent reduction in benifit claims. It is much more efficient to spend millions defeating or watering down bills than taking on children with autism as insured.
Their business model is ill suited to a condition like autism. Even a ‘non controversial’ therapy, such as ABA, is problematic to assign thresholds for ’success’ (i.e., the ability to stop processing claims). Is it when Luke has twenty words, stops hurting himself, is potty trained, is mainstreamed, has graduated college? Instead, more likely, a cap will be placed on costs; which is much better than nothing, but still, unlikely to give many children what they need.
A bill was recently passed in my state; it was heavily ammended by lobbyists to the insurance industry just before passage. I can’t really say I blame them.
When we first signed Luke up for the waiting list for state services, I had an interesting meeting with his representative. First off, there was no receptionist; I had to call her on my cell phone to get let into the building. I was given an empty three ring binder and a huge sheaf of paper (it wasn’t even hole punched!). The title was ‘Navigating Services – It’s Up To You!’ [or something along those lines]. No kidding, there wasn’t even resources for a three hole punch!
What I took from that visit is one of the few things that has been constant in my view of autism; if you want to treat your child, don’t bother waiting for the state, or any other large organization to help. It is up to you!
- pD
After 7 years on a state waiting list for “services” (I use that term VERY loosely), I second what pD has to say!
I think it’s as hard to define ‘medically necessary’ as it is to define ‘ABA’ as there are such huge variations on a theme. Whatever version of ABA we experienced wasn’t considered necessary by our medical insurance company, but it was certainly necessary for me and the boys.
Best wishes
from the LA Times story:
“insurers say conflicts arise when parents expect them to cover services that schools and regional centers should provide, such as training to change self-destructive behaviors.”
—————————-
I had to read that a couple of times, because of all the arguments, I would expect that that training to change self-destructive behaviors would make the most sense under the health insurance model.
Just a muse, because coverage has been improving in some places since Eleanor was originally diagnosed.
When she was 2, prior to diagnosis, her problem was thought to merely be one of speech and communication and she was covered for 2 1hr. Speech language therapy sessions per week for several months and possibility of extension. No fuss, no muss. Immediately after the diagnosis came through, every billing was refused and then excluded. I always thought it ironic that the professional recommendation up to that point were sufficient, straightforward and covered.
The bottom line for the whole thing is $$. As long as there is a way to pass the cost back and forth, in endless “study”, or keep it in private pay, that will be the status quo.
If I were looking for a good insurance bill as a template…try the one recently passed in Pennsylvania. On the educational arena, IDEA needs to be fully funded as originally intended.
Yes, fulling funding IDEA—–and that sentence about self-destructive behaviors also stood out to me. Charlie was once in danger of doing serious damage to himself —- treatment had to come from many sources and all of it was necessary.
I still laugh (kinda)–the ins. co. we had when our son was first diagnosed paid for 2-1 hr. sessions of SLT/wk (which is the best thing that ever happened to him!). My husband’s company changed insurance after about 18 mos., and although the new contract had verbatim wording re: SLT, they would not pay (!) because it was not rehabilitative: he had never had speech to begin with (as far as they were concerned). I should have fought more to get coverage to recover the 18 words or so that he DID have early on in his verbal career! Ha!
This isn’t just an ABA issue. Many insurance companies also won’t cover occupational therapies, speech therapy, or physical therapy, because it’s an “educational issue.” Now, mind you, they cover these things if their need results from “illness, injury, or birth defect.” If he had, say, cerebral palsy, then speech, OT, and PT is covered, no problem (cerebral palsy is considered a birth defect by our insurance). But since we don’t know what causes autism, we’re out of luck.
Well, we were, until my husband took a job because the insurance was out of Maryland, which requires insurance to cover services for autism.
When they give money for THERAPY (like private OT and speech) of someone’s choosing not just ABA and whatever other therapy is the “flavour of the month”, then I’ll be for it.
In the meantime I’ve discovered that in our home, good parenting beats ABA hands down in teaching proper behaviour and self-help skills. And sitting down and reading, printing, doing math and making it fun and interesting… teaches the 3R’s just fine.
Now… if someone was willing to pay for our private speech therapy, that would be nice.
S.
Farmwifetwo: I am glad what works for you is working for you. However, I have a real problem with people who insist that their way is the only way, and that therapies that work for their kids are the only therapies necessary for other children.
My Joey hasn’t required intensive ABA. Well and good. But it has been a lifesaver for several families we know. It hasn’t worked at all for several families we know. That’s autism for you. Speech therapy and OT has done little for several families we know, too.
The fact is, many insurance companies see “autism” and deny everything, including working therapies. It becomes a coding game, a semantics game, a game of hot potato- because the schools tell you these are medical therapies, and the insurance is saying they are educational.
On my blog, I’ve received several comments about this article which suggest “it’s better to pay now for ABA than to pay later for institutional living.” The implication, of course, is that by providing ABA now, you are guaranteeing that the child will develop the skills and abilities to live on his/her own forever after.
Truth is – there’s no reearch to support that idea. The prior poster who noted that there’s no good definition of “successful” treatment is absolutely right! Hopefully we can actually look at longterm outcomes soon – and get a better sense of what works not just for educationally mainstreaming kids but for preparing them for adult life.
Meanwhile, on a related issue – a prior poster noted that there are many kinds of ABA. Boy, is that true! After interviewing many ABA providers for articles on my site, I realize that there is an ENORMOUS difference between the typical discrete trials program and a truly creative, energetic, child-focused ABA program.
As is so often the case, I’m afraid we are often comparing apples (DT) to oranges (high quality ABA)!
Lisa (www.autism.about.com)
I can tell you, as the parent of the child featured in the L.A. Times article. The therapies that my insurance co. was forced to provide are helping. How long will it take? Only time will tell. However, I am for the basics (ABA, OT, Speech), not the flavor of the month therapies that are around.
Earlier on Sunday, Illinois governor Rod Blagojevich announced an amendatory veto to a bill that has gotten stalled in the state legislature. According to ABC local news, the governor has rewritten the bill so that