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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?
What Jat said, way up top!
Definitely speech therapy and occupational therapy. Once the word autism was mentioned by the pediatrician in the orders for her evaluation, our insurance company refused to pay for those therapists to even EVALUATE my daughter for a possible autism diagnosis, let alone for them to treat her for it. Because autism was a specifically excluded condition under our policy.
We had to pay for the diagnosis to get her into the state early intervention program ourselves, because the local Easter Seals wouldn’t help us because our daughter “had insurance”, although it had an exclusion on it for autism.
I know I am a net “cost” to my insurance company (Blue Cross of MN). I have received physical / occupational therapy, MRI, EEG, an eye surgery (and one upcoming), more than a dozen office visits in the last two months…
Someone else (every other BC member) is paying for me. I know my medications alone exceed my insurance payment. I’m not sure what my employer pays, but I think the breakdown is 30:70, with me paying the lesser amount and co-pays ($10 per anything).
In a nationalized system, every taxpayer would be helping me, and the feds would track me to decide what I did and didn’t need.
Blue Cross has approved everything I have requested, even updating evaluations via expensive neurologists/psychiatrists for the university. I can’t complain, knowing I’ve cost thousands of dollars a month.
Naydi- Have you thought about having your child attend a feeding clinic? Our 3-yr-old would eat nothing but baby food, that was, until he attended the feeding clinic at The Thoughtful House in Austin, TX. It was a week-long clinic. He now eats just about anything, that is, as long as it is GFCF, soy-free, etc.
farmwifetwo-
I want to clarify that I am not a fan of ABA, and I certainly do not advocate for it. I just remarked that since their parent advocates have been the most organized, that’s the one “therapy” that’s being pushed in most provinces/states these days. In our particular case that’s been horrendously distressing- while ABA itself was helpful for one of my children, it was disastrous for another. I’m extremely upset that most school boards in Ontario now have no choice but to choose between fulfilling the provincial mandate for ABA and funding OT/speech within the school boards.
I’m aware that our situation is fairly unique in that we were one of the first families to do the IBI program in Ontario (and the first family that was ever discharged from the program because of age), but even though I understand the pitfalls of being the “first” family and the perils of being guinea pigs, it seems likely that my son would still be living at home if it weren’t for his participation in the early stages and later discharge protocol of that program. That has nothing to do with his therapists (who were great)…it has everything to do with the discharge program at that time, the structure of the IBI scenario, and our fairly unique situation of having a single parent family with 3 autistic children of the same age.
That said, ABA is useful for some children- I think that’s a fairly verifiable fact. But it is not suitable for all children, and it’s very discouraging to know that the children who do not respond to ABA are being left with very few choices within the school system in Ontario. ABA in the classroom is pretty much unworkable in the classroom (from what I’ve observed and heard from special ed and resource teachers) even for children who do respond to it. ABA by definition pretty much has to be done with a child one-on-one, and it seems to me that for a lot of children there are better teaching/therapy methods that could be used in a classroom situation.
We’ve always been lucky that my ex-husband’s insurance has covered our children for almost any therapy that we needed or asked for, but as I was a single parent and lived in a subsidized housing complex with many autistic children I’d say that our experience was considerably luckier than the norm.
But if anything else, please take away from this post the message that I am absolutely NOT in favour of ABA as a workable or productive therapy for all children, especially within a classroom setting.
Unlike Jen I think Ontario needs to get rid of it’s ABA therapy for preschoolers and allow parents to purchase those services that family requires, not those advocated by special interest groups. Ironically it’s private providers (those parents that the Prov gives money too and can shop around) aren’t providing pure ABA, but a combo of token/reward, speech, OT, floortime therapies – and it’s “this is your only option – via the local children’s hospital” providers are Pavlov’s dog training children. Also, the Pavlov’s Dog trainers refuse to use the SLP and OT providers that you as a parent are entitled to when they are at preschool age. They will not consult with them… They know “ALL”!!! Yet, all their T’s have is a 2 yr diploma that allows them to teach daycare.
The school system’s ABA therapy has disappointed many parents b/c it isn’t the 1:1 intensive, training some parents hoped for. Instead it’s dealing with behavioral issues in the classroom. ie. Token style programs to help teach social and behavioural to children with autism and using PEC’s during carpet time to teach sitting quietly and putting up your hand.
Trust me… the PDD Teacher (goes school to school) and I had a LONG chat on the subject.
This, I have no issues with since both are used with both children and work very well. But the 1:1 hour after hour of rote training…. is wrong.
I would like private speech. They doubled the price last spring and put it out of reach.
S.
Continuous occupational/physical therapy, and continuous speech therapy should be covered, regardless of age or rate of progress or “maintenance status”. From a $$ point of view, what’s the point of paying for it in the first place if the child can’t keep the gains? Cutting a child’s services off when they achieve a maintainable functional level makes no sense at all. Our current policy booted Bobby at his 5th birthday for “infantile autism-related” speech services (but kept PT/OT coverage – weird), but if he’d been in a car crash the next day he’d have been covered again! And I know we were very lucky to even have that coverage for as long as we did. As for the OT, it wasn’t until we started 2x a week OT at 25 months to get his body more regulated that *anything* else had *any* effect. Seemed like his physical senses were so out of whack that nothing else could get through.
Oh, and a note about mental health parity – there is a loophole in that law in some places. Georgia does require mental-health parity, BUT if your employer has a self-funded insurance plan then that law may not apply. My hubby works for one of those large multinational accounting firms, and they are self-funded – United HealthCare just manages the policy. So, be very sure what the particulars are for the law in your state…I got a rude surprise when I learned that little tidbit about Georgia.
Finally, insurers shouldn’t be able to deny a basic catastrophic coverage insurance policy just because a child has a diagnosis on the spectrum. I was trying to price private insurance coverage for our family in case of lay-offs, and Bobby is uninsurable, even for basic health care. I wasn’t even asking for speech/OT/prescription coverage. I just wanted coverage in case he needed non-autism-related health care, like breaking an arm, a car crash, or had cancer, etc.! And my local very conservative friends wonder why I support nationalized health care. Grr… *stepping off soapbox now*
Oh- that makes sense. In Illinois we have a mandate for mental health care, but I don’t think that mandate includes Autism. The care provided isn’t at parity though- when the federal parity bill goes through we’ll have both equal treatment and mandated treatment for most employer based policies.
We’re hoping that the new token system (sticker chart) will help with the potty training- so far it’s going better than it was. And Chris is no longer borderline failure to thrive- but for the year he WAS I can’t tell you how much money was spent on Pediasure. Now he gets carnation just as a gap fill.
Naydi-
Easter Seals in Canada covers diapers for children over 3…maybe contact your local Easter Seals and see if you can get any kind of coverage through them. It was a lifesaver for us. We were also able to get calorie supplements covered through our “Assistance for Children with Severe Disabilities” benefit…maybe you have something similar in your state? We had to get a prescription for it from our family doctor, but after we did it became part of our funding.
JoyMama- from what I understand, relationship-based protocols (I’m thinking of floor-time), are not going to be covered. The ABA parents have been considerably more organized that most other therapy advocates, and I think that they’ve done a good enough message getting their message across to legislators that in most places ABA is going to be the preferred therapy for insurers. We’ve certainly seen that in Ontario (although up here it’s much more education-based than a question of insurance).
As I understand it, the mental health parity thing only requires that if they *already cover* something mental-health-related, they have to cover it to the same level that they do other conditions. So if autism isn’t covered to begin with, parity doesn’t apply.
Speaking of parity — if ABA is to be covered, what about relationship-based protocols?
Pull ups. I’d like them to pay for pull ups for the 4 year old who refused to potty train. And the endless amounts of pedisure and carnation instant breakfast you have to purchase when they refuse to eat or choose to only eat a very little bit. Oh, and respite care. Yep- I think I’d be happy with that in addition to what has been already said.
Isn’t the mental health parity bill that goes into effect sometime this fall going to force them to treat Autism like any other disorder/disease/whatever?
Speech therapy, Occupational Therapy, and coverage for integrated daycare (preschool). It seems to me that all of those things have enough scientific evidence showing that they’re helpful to make it a no-brainer, but then I’m not a
bureaucrat :-) I’m hoping that this new trend of insurance companies covering ABA is not going to make it more difficult for other therapies to be covered.
In some states that do not have such legislation, insurance companies can exclude therapies that are otherwise covered if the reason for the therapy is autism-related. Thus, insurance that would otherwise cover physical therapy, occupational therapy, or speech therapy, can refuse the coverage because of an autism diagnosis. Those therapies need to be covered, and they need to be covered without the maximum sessions per year that many policies impose – sometimes as few as ten or thirty, combined per year. Additionally, social skills groups (generally provided by speech therapists or occupational therapists) should also be covered.