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Genetic tests and insurance

10 Sep

Does your insurance cover genetic testing?

Many do. But often only in the case of high risk pregnancies or amniocentesis. If you want a diagnosis for your self or your already born child, it’s on your dime.

In other words, if you would like to consider terminating your pregnancy and not bringing a heavy user of insurance covered medicine into the world, the insurance companies are happy to help. If you might be looking for answers, which may result in greater medical expenses, the insurance company doesn’t want to help.

NY Times: Disabled Students Spanked More

12 Aug

An article in the NY Times from two days ago reports on a study that shows that in states where corporal punishment is allowed, disabled students are punished more than their non-disabled peers.

This is based on a study by Human Rights Watch and the American Civil Liberties Union.

The report, based on federal Department of Education data, said that of the 223,190 public school students nationwide who were paddled during the 2006-7 school year, at least 41,972, or about 19 percent, were students with disabilities, who make up 14 percent of all students.


The study is online.

In one state, Tennessee, disabled students were punished more than twice as often as their non-disabled peers.

Two examples from the report:

The ACLU and Human Rights Watch received numerous reports of students who were punished for the consequences of their disability. Many of the cases involved students with autism, who were physically punished for exhibiting behaviors common to children on the autism spectrum. Some parents reported that school staff did not take their children’s conditions under consideration when administering discipline. Students are being beaten for behavior they simply cannot control, or cannot reasonably be expected to control, a grossly disproportionate and fundamentally demeaning response to the child’s condition.

and

Despite this medical and scientific evidence, the ACLU and Human Rights Watch received numerous reports of children with autism who were punished because of their behavior. Sharon H., the mother of a girl with autism in Georgia, described her daughter’s experience: “One time, she was just sitting, rocking side-by-side in the gym. That’s what autistic kids do. She was five at the time. The fourth-grade teacher grabbed her and dragged her across the floor.”[136] Another kindergarten girl with autism in Georgia was thrown into a wall after she started rocking and spinning at the same time.[137]

Much of these statements are anecdotal and unanswered by the school system. And, yet, they are very serious and, let’s face it, not unlike what we have all heard (and some seen firsthand).

Autism Omnibus: Snyder appeal denied

12 Aug

The appeals for the MMR phase of the Omnibus are now concluded: all three were denied.

The Autism Omnibus Proceeding is the way the “Vaccine Court” has taken on the task of deciding the merit of the theory that autism is a vaccine injury. The petitioners had two basic theories: (a) the MMR vaccine can cause autism and (b) the vaccine preservative thimerosal can cause autism.

Three hearings were heard for each theory. In each hearing a single individual took the role of a “test case”. So, each hearing not only represented the case of a single child, but also presented “general causation” evidence as to whether MMR or thimerosal could cause autism.

The six test cases (three MMR and three thimerosal) have been heard. The MMR cases were ruled upon, and all three were denied. All three were appealed. And, now, all three appeals have been denied.

Here is the conclusion of the appeal for the last of the MMR test cases, that of Colten Snyder:

As the special master’s decision makes clear, Colten, and by extension, his family, have dealt with significant adversity for many years, and, like the special master, the court is very sympathetic to their circumstances. However, the court cannot be ruled by emotion and base its determination solely upon the adversity endured by petitioners’ family. Moreover, it is not the task of this court to determine whether vaccines cause autism or other neurodevelopmental disorders. Rather, the court must decide whether the special master, considering the record as a whole, rendered a decision that was arbitrary, capricious, an abuse of discretion, or otherwise not in accordance with the law. She did not. Her decision was entirely rational and fully supported by the record. Thus, the court DENIES petitioners’ motion for review. Pursuant to Vaccine Rule 30(a), the clerk is directed to enter judgment in accordance with this decision.

Very solid decision. The appeal was denied.

Looking back through the document one finds that the Judge noted that the case for MMR causing an injury was clearly not supported, and that the Special Master did not make an error in her decision:

The court finds no error in the special master’s findings. The special master’s conclusion that petitioners did not present a biologically plausible medical theory is clearly supported by the record. She found that the various aspects of petitioners’ theory were not scientifically sound and that the lynchpin of their theory was wholly unreliable. See id. at *87-93 (petitioners’ theory),
116-35 (Unigenetics’ reliability). Next, the special master’s conclusion that petitioners had not established a logical sequence of cause and effect is also supported by the record.

In a statement reminiscent of the Cedillo hearing (first MMR test case) the Judge noted that the medical records show that the “onset of symptoms” did not occur when the petitioners thought:

She [the special master] found that based on the medical records, the onset of Colten’s symptoms did not occur at the time suggested by petitioners.

It is worth reading or skimming the decision. It is a good summary of the case and the evidence presented. I don’t want to quote much more of the document here, with this exception.

Petitioners’ charge–that the special master feared a public backlash against vaccines if she ruled in their favor–is preposterous. There is not a shred of evidence to support petitioners’ claim;70 it rests solely on petitioners’ speculation. Merely because the special master found that petitioners did not carry their burden of proof does not diminish her integrity or render her decision unsupported. Claims of error by a losing party against a decision maker are hardly unusual, but should be grounded in reality.

One thing that bothered me greatly was the implication in the appeals that the Special Masters were acting improperly out of some hidden motive such as trying to protect the vaccine program or fear of public backlash. Sometimes it is difficult for a lay person like myself to understand whether such arguments are expected and “just part of the game” or whether they are attempts to impugn the integrity of the Special Master. I have read enough comments on other blogs to see that many readers are willing to accept that members of the judiciary could act to deny children due process.

I’m glad the Judge in this appeal took the time to respond to these false allegations.

Autism Omnibus: Cedillo appeal denied

11 Aug

In the Autism Omnibus Proceeding there were three “test case” hearings to decide if autism can be considered a “vaccine injury” due to MMR. In all three cases, the special masters (judges) decided that there wasn’t enough evidence. In fact, it “wasn’t even close”.

All three have been appealed. The first appeal was denied a few weeks ago.

The second appeal decision is in, for the test case that was the hearing for Michelle Cedillo. This case had the most “general causation” information and so was the most complicated.

As with the Hazelhurst appeal document, this document is a very good summary of the hearing.

Here is the summary of the appeal arguments:

The Cedillos assert seven arguments in their motion for review to show that the Special Master’s decision is arbitrary, capricious, an abuse of discretion, and contrary to law: (1) A panel of three Special Masters should not have heard the general causation evidence; (2) The Special Masters should not have allowed the last-minute expert reports and testimony of Dr. Stephen Bustin; (3) The Special Master improperly discounted the medical diagnoses and opinions of Michelle Cedillo’s treating physicians; (4) The Special Master improperly ignored concessions made by Respondent’s expert witnesses; (5) The Special Master ignored important aspects of Michelle Cedillo’s evidence; (6) The Special Master abused his discretion by refusing to consider important post-hearing evidence; and (7) the Special Master’s decision was contrary to law. Petitioners’ arguments four and five include multiple sub-parts, specifically raising the testimony of six expert witnesses and seven substantive areas of Petitioners’ evidence that the Special Master allegedly mis-evaluated.

Probably the key to the entire MMR-causes-autism idea, and the first subject that the appeals judge covered was the question of whether measles virus can be considered to persist in intestinal tissue. The petitioners case in this respect depends heavily on studies by Dr. Wakefields group and samples taken from Michelle Cedillo which both rely on the Unigenetics laboratory of Dr. O’Leary.

Without the test results of the Unigenetics Laboratory, Petitioners have lost a cornerstone to their causation theory. The fact that Petitioners did not prove the existence of any persistent vaccine-strain measles in Michelle Cedillo’s body leaves Petitioners well short of meeting their prima facie case that the MMR vaccine played any role in causing Michelle’s autism. Under these circumstances, Petitioners failed to meet their burden of proof by a preponderance of the evidence, and thus the burden never shifted to Respondent to rebut Petitioners’ proof. See Althen, 418 F.3d at 1278. The Special Master’s decision regarding the Uhlmann Study and the Unigenetics testing is reasonable in all respects, and could not in any sense be regarded as arbitrary, capricious, or an abuse of discretion.

Since the MMR test cases were heard, another very important study has been published, further showing that there is a lack of persistent measles virus in children with autism and bowel problems.

Without going into the details on the other points in the decision, we can jump to the conclusion and see that it is succinct and clear:

The issue before our Court is not to determine the causes of autism. The Court can only hope that medical professionals succeed in identifying the causes and developing a cure for this tragic disease. Rather, the Court’s task is to weigh the Special Master’s February 12, 2009 decision under the applicable review standards of the Vaccine Act, and determine whether it should affirm or modify the decision to any extent. After performing this review, the Court is satisfied that the Special Master’s decision is rational and reasonable in all respects, and is in accordance with law. For the reasons addressed above, the Special Master’s decision is AFFIRMED.

Or, to put it more succinctly:

Petitioners still have the burden of proving their claims by a preponderance of the evidence, and the Special Master reasonably concluded that they failed to do so.

There is still one more MMR appeal in the works. Given the results of the first two, my guess is that the attorneys are preparing for the next step in the journey towards a civil case.

Without more evidence to support their case, I would have serious doubts about the MMR hypothesis winning in a civil trial. Since the omnibus hearing, there is more good evidence against the MMR hypothesis and the plaintiffs will face more stringent evidence rules.

It’s time for David Kirby to disavow the autism epidemic

3 Aug

The idea that mercury caused an epidemic of autism is both wrong and very damaging to the autism communities. Many contributed to this damaging notion., but David Kirby without a doubt carries a good quantity of the blame for his book “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy” and efforts since.

Mr. Kirby often tries to hide behind the notion that he is just “trying to spark a national debate”. Sorry, but that is nonsense. He actively promotes the idea that vaccines cause autism. It is unclear to this reader whether Mr. Kirby is currently being paid for his efforts. In the past he cherry picked information and packaged it in seemingly self-consistent packages to convince people that an epidemic did occur.

He has now moved to a tag-team approach for presentations to the US congress. He presents information to support the idea that vaccines could cause autism. He then let’s Mr. Mark Blaxill take over to promote the epidemic with the old, tired arguments.

It’s like Mr. Kirby still wants to be able to say, “I never really said there was an epidemic. I was just sparking a discussion.” It’s Mark Blaxill that is actually calling it an epidemic.

Nonsense.

This has been bothering me for some time. It came up again strong when Mr. Kirby commented on a blog piece. David Kirby doesn’t generally participate in the online discussions-even to the point of not answering comments on his own blog pieces. He broke that tradition recently in a blog piece on the Mother Jones website: Breaking: Vaccines still don’t cause autism

My response to Mr. Kirby incorporated much of what I was considering for a future blog post. So, rather than paraphrase what I wrote, here it is in full:

Mr. Kirby,

I see your usual arguments above. I see, also, the usual gaps in your discussion. Over the years, you have gone from promoting the “vaccines caused an epidemic of autism” to dancing around the subject of the false “epidemic”, neither stating that there was an epidemic, nor admitting your mistake. Could you comment somewhere, on the record: was there an “epidemic” of autism caused by mercury? You seem to leave that to your colleague, Mr. Blaxill, giving yourself some form of plausible deniability. It is irresponsible.

You rely heavily now on the NVAC recommendations. Why do you leave out so many comments by NVAC?

The NVAC is assured by the many epidemiological studies of the effects of mercury exposure done in a variety of populations, which have demonstrated that thimerosal in vaccines is not associated with autism spectrum disorders in the general population.

Are you prepared to agree with NVAC that the data are in and that there has been no epidemic of mercury caused autism? It would be the honest thing to do.

You rely heavily on the idea that mitochondrial disorders are related to autism. You pushed heavily on your blog the idea that mitochondrial disorders are caused by mercury, without substantiation. In fact, this idea is strongly rejected by the very experts you rely upon.

Further, you leave it implied that children with mitochondrial disorders and autism indicate a link to autism as a vaccine injury. This is clearly not the case.

Why do you leave out the fact that most children with mitochondrial disorders and autism do not show regression. Without regression, it is clear that vaccine injury is not causing autism in these individuals?

Why do you leave out the fact that in the one study of children with mitochondrial disorders and autism, it is clear that vaccines are not causal in the vast majority of cases, and could be questionable in the one case cited so far?

You cite that there could be a sizable population of autistics who have a mitochondrial dysfunction. Yet you leave out the public statements by one of the very doctors who supported the Hannah Poling case in vaccine court that any such injuries are rare. This from the few doctors who support the idea of mitochondrial disorder as a vaccine injury. Other specialists have stated that it is far to early to draw a conclusion that mitochondrial disorders caused by vaccination is even “rare”.

Why have you not removed your blog piece that was so erroneous that you were forced to rewrite it within a day, with an admission that you seriously erred? Isn’t that a form of dishonesty?

Are you prepared to join Rick Rollens, one of the strongest proponents of the vaccines-cause-autism notion, in stating that the idea that MMR causes autism has been tested and MMR is no longer suspect?

I will ask again, if you are going to cite NVAC, are you willing to join them and state that mercury did not cause an “epidemic” of autism?

Would you at least be willing to include quotes from NVAC that are, shall we say inconvenient, to the notion of a vaccine induced “epidemic” of autism? Quotes such as:

Vaccination almost certainly does not account for the recent rise in ASD diagnoses; however, public concern regarding vaccines and autism coupled with the prevalence and severity of ASD warrant additional study in well defined subpopulations.

This quote makes it clear that
a) NVAC does not support the idea of an autism “epidemic” caused by vaccines
b) NVAC is not calling for studies of vaccines and autism due to evidence presented so far, but, instead, by public concern.

Mr. Kirby, your half truths and misleading arguments cause great harm to the autism communities, as well as to public health. You personally are responsible for much of the public’s misconception that mercury caused an “epidemic” of autism. Don’t you agree that you personally should publicly refute your previous stance?

Being wishy-washy on the epidemic question and letting your colleague Mark Blaxill push the idea in your tag-team briefings is just dishonest. Either you still believe in the mercury-caused-epidemic (and you are wrong) or you should be clear that it was a mistake.

It was a mistake. Earn some respect. Admit it.

Autism Omnibus: Hazelhurst appeal denied

29 Jul

The Autism Omnibus Proceedings is, for better or worse, one of the big stories in the world of autism news. Hearings have been held, using the best science and arguments that could be brought to bear. The two theories were (1) does MMR cause autism and (2) does thimerosal cause autism.

Each theory was tested using three “test cases”. Essentially, three trials for each theory, each discussing an individual child plus arguments on “general causation”.

So far, the decisions are only in on the MMR question. The answers were clear and decisive: “this is not a close case”.

The Omnibus decisions are not the end of the vaccine/autism lawsuits. Not by a longshot. The first step was an appeal, and the first appeal has been decided.

Here is the conclusion of the Judge who heard the appeal for the Hazelhurst case:

In hearing this appeal, the court is not without sympathy for Yates, the Hazlehursts, and the other children and families dealing with autism and autism spectrum disorders. And this court, like the special master, acknowledges both the burdens many of these families have faced and the tremendous love and support they have shown their children. The facts, however, do not support petitioners’ appeal and we have no choice but to deny their motion. Accordingly, for the reasons set forth above, the special master’s decision of February 12, 2009, is AFFIRMED.

I.e. the appeal failed. The decision stands. The Court holds that MMR does not cause autism.

The judge’s decision in the appeal gives a good summary of the original case. If you want to read about the Hazelhurst case, it would be the first place I would send you.

From the appeals judge’s ruling, here are the two “cardinal” flaws in the petitioner’s case:

1) First, the special master explained that petitioners’ experts based their opinions on the characteristics of the “wild-type” measles virus rather than on the characteristics of vaccine-strain measles, despite the fact that the measles vaccine is distinguishable from the wild-type measles virus in several key respects.

2) Second, the special master observed that petitioners’ experts further based their opinions on studies (detecting the presence of the measles virus in the gut tissue of autistic children) that the special master found to be unreliable.

The special master considered the presence of the measles virus in the gut to be the “linchpin” of the petitioner’s case. In other words, they needed to show reliable data or studies demonstrating that the virus was still in the tissues of the children long after the vaccination.
The two studies they had to rely on were (a) that by Dr. Wakefield’s team and (b) an unpublished study by Dr. Stephen Walker, presented as a poster at the 2006 IMFAR conference. Well, the Wakefield study was pretty well discredited, and the Walker study was never published.

In the appeal, the Hazelhurst’s lawyer argued that the testimony of Dr. Stephen Bustin should not have been considered. Amongst the arguments were that some of the information was submitted at the last minute.

No arguments were made that Dr. Bustin was wrong in his analysis of the O’Leary laboratory. That was one of those strange moments in law–no one challenged Dr. Bustin on being right. The judge hearing the appeal noted that the rules for the Vaccine Court are different from a typical court of law. Specifially, the rules are designed specifically to allow more information in to inform the Special Master. The judge further noted that under the typical rules of evidence, the Walker study would never be admitted anyway.

If you haven’t read about Dr. Bustin’s testimony, you should consider it now. Dr. Bustin basically discredited the entire “persistent measles in the gut” idea by showing that the O’Leary laboratory that made tests had serious methodological flaws and, basically, couldn’t make the tests at all.

The Hazelhurst’s lawyer then argued that the Special Master failed to include all the relevant evidence., In specific, that the Walker study wasn’t given due weight.

Again, one of those strange moments in law. The laywers moved directly from trying to get the Special Master to exclude evidence that was clearly relevant, to claiming that the Special Master had to include all relevant evidence. I guess that’s why I am not a lawyer. I couldn’t pull that off with a straight face.

As it turns out, even the witness for the Hazelhurts’ side stated that the Walker study wasn’t reliable:

Respondent additionally notes that Dr. Hepner herself acknowledged that the preliminary data from the study was “not useful at this time” (Cedillo Tr. at 682), declined to draw any conclusions about the biological significance of the Walker group’s findings (Cedillo Tr. at 682), and identified what respondent describes as several significant drawbacks to the study, including that the experiments had not been “blinded”28 and had lacked negative controls.

So, it is rather moot as to whether the Walker study was considered, since it doesn’t really provide substantial evidence to support the MMR theory.

The third main argument used in the appeal was that the Special Master failed to decide on a “critical issue”. Namely, whether regressive autism exists as a separate phenotype.

The Special Master wrote in his decision, and the appeals judge agreed: since the decision held that MMR doesn’t cause autism, there was no point in deciding on the question of regressive autism as a separate phenotype.

Given that the expert testimony was against this idea, it is probably better for the petetioners that this question was left unanswered.

The main result is, of course, the original decision was upheld. Looking forward, it doesn’t look good for the MMR theory to win in civil litigation from my perspective. The Bustin testimony is very damning to the little evidence there is, and that will be allowed in a civil case. The Walker study, however, will almost certainly not be allowed as it is unpublished and has severe limitation

I stand corrected

16 Jul

I have stated in recent posts that I don’t think it is appropriate for the government to declare any specific therapy as “medically necessary” by law. So much so that I wondered if there was examples of it happening. Well it does.

Consider House Resolution, H.R. 2413, the Autism Treatment Acceleration Act of 2009. Not a law, but a potential law (a bill).

3) TREATMENT OF AUTISM SPECTRUM DISORDERS- The term `treatment of autism spectrum disorders’ means the following care prescribed, provided, or ordered for an individual diagnosed with an autism spectrum disorder by a physician, psychologist, or other qualified professional who determines the care to be medically necessary:

`(A) Medications prescribed by a physician and any
health-related services necessary to determine the
need or effectiveness of the medications.
`(B) Occupational therapy, physical therapy, and
speech-language pathology.
`(C) Direct or consultative services provided by a
psychiatrist or psychologist.
`(D) Professional, counseling, and guidance services
and treatment programs, including applied behavior
analysis and other structured behavioral programs. In
this subparagraph, the term `applied behavior
analysis’ means the design, implementation and
evaluation of environmental modifications, using
behavioral stimuli and consequences, to produce
socially significant improvement in human behavior,
including the use of direct observation, measurement,
and functional analysis of the relationship between
environment and behavior.
`(E) Augmentative communication devices and other
assistive technology devices.’.

There it is–people trying to make a law to define some of what must be considered medically necessary for “an individual diagnosed with an autism spectrum disorder”.

I don’t think people should codify into law what is included in “medically necessary” for any condition. I am open to hearing dissenting views, especially from medical doctors.

Luckily the bill presents one reason why I don’t like this:

(13) Effective health care, treatment , and services for individuals with autism spectrum disorders depends upon a continuous exchange among researchers and caregivers. Evidence-based and promising autism practices should move quickly into communities, allowing individuals with autism spectrum disorders and their families to benefit from the newest research and enabling researchers to learn from the life experiences of the people whom their work most directly affects.

This is exactly why I object to codifying “medically necessary” treatments. How are effective new treatments supposed to move quickly into communities if we have a small subset that is declared medically necessary by law? How does a new treatment get into communities? Passage of a new law? The exchange should be as noted above–between researchers and caregivers (with practitioners in there as well). The process should not include legislators, in my opinion.

Imagine if secretin had been legally defined as “medically necessary”. We would now be in the situation where secretin is not considered medically necessary by the medical community, but it could be still legally defined as such.

It gets worse. The bill is being sold using the cure-them-because-they-cost-so-much mentality. From the “findings” section of the bill:

(8) The Harvard School of Public Health reported that the cost of caring for and treating individuals with autism spectrum disorders in the United States is more than $35,000,000,000 annually (an estimated $3,200,000 over an individual’s lifetime).

Others have taken apart the “cost of autism” argument far better than I can.

There is a lot more that can be (and I am sure will be) picked apart in this bill. I will bring up just one more point, again from the Findings section:

(6) Individuals with autism spectrum disorders often need assistance in the areas of comprehensive early intervention, communication, health, recreation, job training, employment, housing, transportation, and early, primary, and secondary education. With access to, and assistance with, these types of services and supports, individuals with autism spectrum disorders can live rich, full, and productive lives. Greater coordination and streamlining within the service delivery system will enable individuals with autism spectrum disorders and their families to access assistance from all sectors throughout an individual’s lifespan.

It strikes me very odd, and in fact, sad, that they would mention the value of recreation, job training, employment, housing, transportation and education, but not act to improve the way the US handles those issues.

But, I have drifted off topic. The main point is, yes, there is an effort in the US legislature to legally define ABA as “medically necessary”.

I did a search on thomas.gov for bills in the 111th congress that include the phrase “medically necessary’. I got 56 hits for bills in various stages of becoming law. Here are just a few examples (including one about autism).

House Resolution (H.R.) 995 states that annual mamography or MRI can not be denied as not medically necessary.

H.R. 870 is the “Medicare Medically Necessary Dental Care Act of 2009”

A bill that is directly related to autism: H.R. 1600, “To amend title 10, United States Code, to provide for the treatment of autism under TRICARE” states:

(g)(1) For purposes of subsection (a)(18), treatment of autism spectrum disorders shall be provided if a health care professional determines that the treatment is medically necessary . Such treatment shall include the following:

`(A) Habilitative or rehabilitative care.

`(B) Pharmaceutical agents.

`(C) Psychiatric care.

`(D) Psychological care.

`(E) Speech therapy.

`(F) Occupational therapy.

`(G) Physical therapy.

`(H) Group therapy, if a health care professional determines it necessary to develop, maintain, or restore the skills of the beneficiary.

`(I) Any other care or treatment that a health care professional determines medically necessary .

`(2) Beneficiaries under the age of five who have developmental delays and are considered at-risk for autism may not be denied access to treatment described by paragraph (1) if a health care professional determines that the treatment is medically necessary .

Talk about a wide open door. Any health care practitioner can declare any “care or treatment” to be medically necessary, and the insurance has to pay for it.

This whole post is about how I’ve been wrong before, but I can not see that bill passing without changing that giant loophole.

Again, I don’t think the government should be in the position of defining what is medically necessary. To me it is like legally defining pi to be 3.0000.

However, neither should insurance companies be the sole arbiters of what is and is not medically necessary. What do we do when an insurance company denies claims based on “lack of medical necessity”? One can appeal, although many do not know that. Usually insurance companies have internal appeals processes. I heard a lawyer once state that he had fewer appeals to bring a case to the supreme court than to get through an insurance company’s appeal process.

So, where does this leave us? First, yes, there is an effort to create laws which specifically call for ABA to be defined as medically necessary. Second, and more general, we have a system where medical necessity can and is defined in some cases by law.

In an ideal world, laws do not define medical necessity. We don’t live in an ideal world. What do we do?

End insurance discrimination?

13 Jul

There is one very important thing that is missing in the call to action on insurance reform put out by Autism Speaks. It is posed as a call to end insurance discrimination. To end insurance discrimination for autism.

Why only autism?

If there is insurance discrimination (there is), it is not limited to autism. We are part of a larger disability community. Therapies for people with autism (such as speech an occupational therapy) are often denied because insurance plans often include specific exclusions for developmental disabilities.

While much of the discussion on this site has focused on ABA, speech and occupational therapies are both commonly used with children with autism and are expensive. ST and OT can easily run $10,000 to $20,000 per year. Easily.

Is it right for insurance companies to deny benefits based on disability?

Is it right to call for an end to discrimination, but only for autistics?

I say no to both.

Federal mental health insurance parity

10 Jul

As noted recently, there is a push to keep mental health parity in US Federal laws for insurance.

Why do I say “keep”? Because there is already an act to include mental health parity (which includes autism) on the books, which if I recall correctly, is set to go into effect Jan 1, 2010.

I discussed this while the legislation was ongoing. It is now public law 110-343, and can be found here. Don’t be put off by the fact that the abstract states:

To provide authority for the Federal Government to purchase and insure certain types of troubled assets for the purposes of providing stability to and preventing disruption in the economy and financial system and protecting taxpayers, to amend the Internal Revenue Code of 1986 to provide incentives for energy production and conservation, to extend certain expiring provisions, to provide individual income tax relief, and for other purposes.

“Other purposes”…they don’t even mention the mental health parity act until page 98! Ironic considering that the bill started out as the “Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act”.

So, why the push to lobby Nancy Pelosi and others to “end discrimination”? First is that this “Equity Act” didn’t apply to everyone with insurance in the US. But, mostly, the reason is ecause the Federal government is discussing big changes in the way insurance is governed (per Obama’s campaign promises).

Call congress to support autism insurance

9 Jul

Autism Speaks has been working in many states to institute insurance parity for autism. “Parity” means that therapies to treat autism must be given on the same level as other medical conditions.

One big loophole in this is that many insurance programs do not fall under state law. In the US, most people who have medical insurance get it through their employer. Generally, we all think that our employer buys a policy for us from some carrier like Blue Cross or Kaiser. But, what if the employer acts as the insurer? I.e. what if your company pays your medical bills? Well, one thing is that your company is not bound to follow state laws.

So, say you live in a state that has a parity law requiring that autism be covered, what then? Since the federal government doesn’t have insurance parity, you and your family don’t benefit from your state’s law.

You have to imagine this is one reason why companies self-insure.

That aside, Autism Speaks is heading a campaign to get the federal government to pass legislation to end “discrimination” in insurance coverage. They are asking people to call legislative leaders: house speaker Nancy Pelosi (contact info) and Senate Majority Leader Reid (contact info).

Up to this point I think this is very good. I would encourage people to contact these leaders, as well as your own congressperson and senators.

However, the TV ad really bugs me. Take a look and form your own opinion:

To people in the autism community, I think the message is clear. Insurance means funding ABA to make a kid normal. The kid with insurance gets to play with other kids, the kid without insurance is left sitting on his own.

I am not anti-ABA, but I really don’t like that message.

I also am not wrong in my interpretation. From Autism Speaks’ site “autism votes”

“Neighbors” depicts two young boys who are next door neighbors – one, whose insurance has given him access to autism therapies is shown playing with other kids; the other, who has been deprived of access to therapies, sits alone on his lawn, socially isolated. The TV spot ends with a call to action, urging the American public to call United States Senate Majority Leader Harry Reid (D-NV) and House Speaker Nancy Pelosi (D-CA) to tell them that any national health care reform plan that does not include autism insurance reform is unacceptable.

Fourteen states have already acted to amend insurance laws and require insurers to cover medically-necessary, evidence-based autism therapies. In the other 36 states, insurers explicitly exclude coverage of these behavioral therapies from policies, which places a significant financial burden on families seeking to provide their children with necessary services. Applied behavior analysis therapy (ABA), recognized as an effective, evidence-based treatment for children with autism, costs upward of $50,000 a year – a cost well beyond the means of most American families. A federal law would supersede state laws and require all insurers to cover ABA.

Again, I am not anti-ABA. I am against using ABA in an effort to make an autistic person (child or not) “normal”. Since this subject seems to come up in discussions of ABA, I will also make it clear that I don’t think any therapy should be mandated for autism. Mandating ABA is not the intent of this initiative, from what I can see.

Don’t let Autism Speaks or the commercial stop you if you support insurance parity for autism. It is a good cause.

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