“You first give the year as 1998 and now as 1989. I do not have the information in front of me, but I am certain that there was a federal mandate for all states for early intervention from birth in 1998 and I think it was fully in effect in 1989”.

If I wrote 1998, it was a typo. My daughter was diagnosed in 1988 and denied claims for the four months before she started in the local school system. You have to understand how insurance companies operate. I was in management in Insurance (Property & Casualty)for many decades.

If a claim examiner has any reason to question the validity of a claim and they are encouraged to do so, the company just has to deny the claim. The majority of claims never get past the initial denial even if the denial was without merit.

In the end I was completly reimbursed, not because of a review by the health provider but rather because of the intervention of the CEO of the firm I was working for. The health provider went to great lengths to state that it had not accepted the validity of the claim but rather called it a single case ‘accomodation’ at the request of the policy holder’s CEO.

It’s the flip side of the coin. If the parents want a particular treatment, they want it covered by insurance. But what if they don’t want the treatment? What if, like psychotropic drugs, the treatment has crappy evidentiary support but doctors are recommending it anyway?

thanks for your input. This is more than the flip side of the coin—it is one of the key questions. I’m glad you elaborated on the idea of mandates. The word is highly charged in the discussion of ABA. So much so that many people on hearing that that health insurers are “mandated” to pay as something different than it is.

When an insurance company is mandated to pay, that is far different from a parent or a provider mandated to provide the therapy for an autistic child. Clearly.

The odds of ABA (or any specific therapy, medication or treatment for that matter) being specifically mentioned in a law and specifically “mandated” is very low. Are there any medical procedures which are mandated by law? I can only think of one—vaccines. And that is a very soft “mandate”. Other than that, the government should not be deciding what therapies are appropriate. Better therapies come out, new research invalidating old therapies comes forward.

Should autism be included in the healthcare overhaul congress is considering, the language would almost certainly not include any “Mandates” for ABA. Rather, coverage for autism would be mandated and any specific therapies or treatments will be included afterwards (and not codified in the law) by precident—people arguing that ABA or other therapies meet some definition of “medically necessary”. They would also be removed from any approved list by research as well, either showing that they are not effective or that other therapies are more effective.

That is why I am in full support of the NIH doing the RCT’s on the therapies commonly being used—ABA, floortime/DIR, RDI, etc.. Not because I have some belief that they will prove me right in some way, but because the research is so thin (or non-existent) for these therapies.

For some time, Joseph has been pointing out that the children who took part in the original ABA studies are now adults and that it would make sense to study them to confirm or reject the notion that there was long-term benefit from the ABA therapy they received. I think that is an excellent idea.

We need good science on this. I don’t know why more people aren’t calling for it.

Do parents have the right to withhold medically necessary treatment for their child? In my state, they don’t.

Yes and no. While there might be the possibility of abuses on an a few cases. It is quite rare for the state to intercede. The idea that this would open the door to mandate ABA for all people (or just all children) with autism is just not founded.

Again, this is where good, clear science is needed. That would better inform both the parents and the government in this.

Medically necessary does not automatically imply that the state will intercede into families. A good example is right in front of us. Vaccines are medically necessary. They fit the California definition “necessary to protect life, to prevent significant illness…”, and I believe are generally accepted as medically necessary. Vaccines are, in fact, the only medical procedure that I can think of that is legally “mandated”. However, I think we would all agree that there are many people who withhold this medically necessary, mandated, treatment from their children without consequence.

Consider the question of the state interceding to impose ABA therapy on a child whose parents chose to not do ABA. Aside from the “we need better science” answer, I would say that the parents would find it quite easy to find “experts” to say that ABA is not appropriate for their child. My guess is that if the parents do not want ABA, their school district would happily oblige with experts who agree that ABA is not appropriate for the child in question, if only to avoid the situation where the school district ends up paying for some or all of the ABA.

As an aside, the Nate Tseglin case is amazing subject in that it is one where this blog, AoA, ASAN and Ginger Taylor all agreed that the situation was a travesty.

As for problems logging in, I had a problem initially after the redesign, but got through on my third attempt. Perhaps anyone having trouble simply needs to perform more “discreet trials” of the process until they can get the process down.

– pD

“There is substantial evidence to support the findings that Nate was suffering serious emotional damage while in the custody of his parents, as demonstrated by his aggressive behavior directed both toward himself and others, and that the parents were unable or unwilling to allow him to be treated on an ongoing basis. ... According to medical experts, Nate needed a controlled setting where he could be provided with treatment, but the parents refused to consent to such treatment. ...

There is substantial evidence supporting the court’s finding that the parents’ repeated failure to provide the care that Nate required caused him to continue to act out aggressively. ... The parents were not able to care for Nate on their own, and medical professionals did not agree that Nate should receive various treatments that the parents recommended or requested.”

In re Nate T., D051250 (Cal. App. 4/18/2008)

The treatment that the parents didn’t want was psychotropic drugs, and the treatments that they did want were, I’m guessing, “biomed.”

Nate got out when he turned 18 and the court lost jurisdiction over the case because it was based on child abuse or neglect.

Anyway, I think it’s reasonable to wonder what would happen if ABA were deemed a medically necessary treatment for a particular child by a health care practitioner, and the parents refused to carry out that treatment, and the child had “severe behaviors” ...

It’s the flip side of the coin. If the parents want a particular treatment, they want it covered by insurance. But what if they don’t want the treatment? What if, like psychotropic drugs, the treatment has crappy evidentiary support but doctors are recommending it anyway?

We don’t want our kids to be discriminated against in health care but, unfortunately, we have a long way to go to get to real evidence-based autism treatments. In the meantime, what treatments should we say are “necessary to protect life, to prevent significant illness or significant disability, or to alleviate severe pain” (the California definition of “medically necessary”)?

Job done, as we say.

If you take as the only outcome measure being an “emerger”. It is somewhat fair, as that is along the lines of Lovaas’ outcome measure. I don’t think it is a good measure. Many who argue against ABA seem to feel the same way.

Kanner wins.

Job done, as we say.

keep in mind this is a UK based blog. They don’t have….congresspeople.

“Argument by assertion.

Typically, when it comes to ABA, this is accompanied by argument from authority.”

Hence my three little words ‘in my view’. Opinions are like congressmen, everyone’s got one…

My main problem with some of these assertions I see above is that I get the impression that some would say that behavioral interventions are NEVER necessary for children on the autism spectrum. Let me pose the question back to those detractors of ABA to ask whether I am making a true statement on your behalf. If I am not, I put forth that just as with ANY intervention for autism, like Speech and OT, medically necessary does not mean medically ‘required’.

One may want to argue the language of ‘mental illness’, ‘disease’ and any other terminology, but to stretch the intent of the legislation in this manner:

“reasonable and necessary to protect life, to prevent significant illness or significant disability, or to alleviate severe pain.”
He emphasizes his view that in the absence of ABA-based autism interventions, autistics will be in “severe pain.”

trivializes those situations that some autistics are in life threatening or self damaging behaviors that MAY be helped (and I would assert my OPINION that they ARE helped) by behavioral interventions. But again, the term medically necessary does not equate to medically required. To hold behavioral interventions to a generic ‘beneficial more than harmful to all autistics’ standard cheapens the need to some who could benefit (again IMHO) ...

You first give the year as 1998 and now as 1989. I do not have the information in front of me, but I am certain that there was a federal mandate for all states for early intervention from birth in 1998 and I think it was fully in effect in 1989.

But in some states it is provided at the state level and not through the local school district. I am sorry that you were not properly informed about the law and I realize parents of very young children may not be informed of their rights under federal laws that have been on the books for decades.

As I tried to express before and I will try to be more explicit, I think Autism Speaks and other such organizations should inform parents of their rights under existing laws, such as IDEA, and put some effort into implementing these existing laws, which cover all children in the USA, instead of putting all their effort into medical insurance parity, when so many people do not have any medical insurance.

By the way, I will now be away from my computer to post comments for about 1-1/2 days.

Arthur Golden