How Do You Pay For What You Need?
April 2, 2008 by Kristina Chew, PhD
Filed under Health
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.
And the shell game goes on and on.
My child has a medical condition, it is clearly a medical condition, it has been known as a medical condition for decades–he is missing muscles in various parts of his body, this resulted in contractures of his fingers, hands, wrists, toes, ankles, knees, hips, and trismus. He requires PT, OT, sometimes speech, and surgical interventions, orthotics…
And guess what? The insurers do NOT, yes let me repeat, they do NOT cover these services. After lots of fighting they covered the surgeries, but only at a fraction of the cost–leaving us with bigger bills. They do not pay for OT or PT, they try to claim that his need for OT and PT is EDUCATIONAL. And of course the school claims that his need for OT and PT is :::drumroll::: MEDICAL. Like families with children with Autism, we received better services when he was in early intervention. They paid for the OT and PT and we fought the insurer on each and every surgery (9 before the age of 3).
Before our daughter was diagnosed with autism, she was hospitalized for failure to thrive. After all the medical tests were returned as normal, they decided it must be sensory related and referred her for OT and speech therapy. Our insurance denied coverage of course because it was “educational” even though her health depended on it. The educational world said it was…medical and therefore would not cover the therapy, even in early intervention (regarding the feeding concerns). We’ve been playing this game for two years. My daughter has only gained ounces in those two years and is sick regularly but since no medical test can pin down the cause, the medical world and educational world continue to bounce her back and forth with our insurance company denying coverage all the way. It’s insane.
Here’s something ironic on this subject. Last year, after various parents (myself included) lobbied the Oregon legislature, it passed a bill forbidding insurers to arbitrarily cut off speech and OT services for developmental disabilities at age 7 (as did many policies including mine).
My insurer, Blue Cross Blue Shield, responded by eliminating speech therapy for ALL kids under the large group policy that we’re covered under… That’s right, rather than pay for this service for autistic kids, they now won’t pay for it for anybody.
I hear you about the watered down versions of therapy offered in primary schools. I believe that is one of the symptoms of underfunding education.
Some very good justifications (I thought) for the ‘medical treatment’ use of ABA/OT etc. were just recently posted in comment http://www.autismvox.com/insurance-coverage-for-aba/#comment-350373
I still find it sickening that with all of the well educated big money rolling around capitol hill that we mainly get nothing more than lip service bills through congress/exec, with lots of pork flavoring. Or semi or ineffective plans that have to be rewritten when they expire. (Not saying that NCLB and IDEA didn’t accomplish at least a wee bit of progress.) Usually too little and too late, if it’s even somewhere close to the realm of useful.
Story of our lives. However, is it just me or are some of these therapy fees people are quoting are too high?? We had to pay a lot out of pocket but nothing compared to what is quoted here. I guess we did interview people to do ABA with our daughter and decided against that method. That would have cost us lots of money but I don’t think it would have even been close to what is stated here either. Little by little we quit paying for therapies. It became necessary to survive and not go further in debt and decrease stress in our lives. I would like to know more about what services people choose to use and how much these various therapies cost from state to state. It would be very interesting.
Kristina, I want to thank you for your comment on my Autism:The Musical Post Inspired by Wyatt. You made my day!
I think part of the problem is that even the autism community is divided on how ABA should be funded. Some advocate for insurance, some think education should pay for it and some, like myself, are working on both ends and hoping that it will be funded one way or another. I don’t know the best solution to this problem but I do know that children need this.
@Patrick,
It just seems too often that we hear about “training by an expert for staff” and it’s something less than that.
@Jill,
I think you note the core of the problem: Services are needed and it’s amazing, and exhausting, what has to get done just to get a few things funded. The one solution I’ve found—it’s not really a solution, but what you have to do—is to learn as much as I can about teaching my son (for a while, that meant teaching him to deal with anxiety and to communicate that anxiety before he was really upset).
@Marla,
We recently discontinued home ABA therapy for Charlie—it was like paying a second rent. And it was time to end—on the other hand, the rent that we pay to live in this town with the school program for Charlie often feels like a sort of “tuition” for him.
I’m looking forward already to your next post on Autism: The Musical!
How do we pay? We don’t, we can’t. My husband and I work 3 jobs just to pay our mortgage every month for a home with major repair needs that go unfixed. No cable, no cell phones, no soda or junk food, eating out or anything. And I have maybe $100 left over after expenses to split between my two boys, 3 and 2 both on the spectrum. My oldest is in EC thru the school system and my younger still gets Birth to 3 services, but unless WI steps up and starts paying for services, We just can’t afford it for one, let alone 2. We do as much as we can reading and working with L and K at home, I stay with them during the days and work nights. But its hard to do full time therapy for two kids, plus run a household, laundry, meals, etc. But we try. I hope it is enough, even though I know it isn’t.
It never seems like it is—–and the legislation about insurance coverage for autism would have helped, right (if I may ask)?
We kind of talked about this once before here – we have been fairly lucky. PA has a lot of benefits – I have never paid for a thing.
Now, I didn’t *want* intensive ABA; I bought Lovaas’ book and learned to do it myself, used what I wanted and trashed the rest. But early intervention through the IU (Intermediate Unit) has people who know ABA and they use it.
His medical is covered by the DPW (Welfare) so meds are covered 100%; the IU provides speech, social skills therapy, and his aide at school (they also are responsible for early intervention).
MH/MR (Mental Health/Mental Retardation) provides his counselor; they contract out through various agencies, and will not give your info to the school should you want to have psycho therapy. This is really important for teenagers.
All three agencies provide TSSs and BSCs. My son has a BSC, but not a TSS, even though he has an aide at school. She’s a school district employee, and the school bills the IU for her paycheck.
Weird, but it works for me. The things I have had to fight for all have had to do with services and educational supports, etc. because of NCLB.
I see fees for therapy on craigslist and they are very high, also the same could be said for caregivers or respite workers. The funding agencies pay so little on one hand and then the individuals want so much to work independently. Then you would have to have extra insurance to protect your home and family, etc.
I have issues with assessments and the way they portray me at times and the lengths therapists go to get more hours at the expense of the family or kid. I dont want that data in a file for the rest of his life. I also do not like cross agencies contacting each other or some therapist going to school and then doing a report and the parent not really knowing what is going on, so to keep family intact and save my sanity we have never done ABA. We did floor time and hope to get a new therapist for that in the near future.
When I first got my computer in Dec of 99 I joined several onelists (now yahoo groups) and one was DTT-NET. I was clueless as to what they were all talking about but stayed on there for a few years.
I do regret not looking further into Lovaas since we are here in Los Angeles, but as a single parent with two kids under three with the dx it was hard to do a lot and then dealing with driving and traffic would have been too much.
There was Dr Rikki Robinson and BJ Freeman at UCLA. I did look into Auditory Training at some clinic in Pasadena but could not get funding, they said they would reimburse me and that was a lot to come up with at the time.