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Insurance bureaucracies slow to catch up on new AAC devices

15 Sep

For Speech-Impaired, Insurance Fights Remedy. So goes the title of a New York Times story about people trying to get around some antiquated rules on speech devices.

If you are like me, when it comes to speech (or augmentative and alternative communication) devices, the image that comes to mind is often a big, dedicated device like a dynavox.

Times have changed, even for dynavox, who has a smaller device that includes wireless web browsing.

Even more, text-to-speech and icon based programs are available for laptops and, get this, the iPhone/iPod-touch.

Imagine a device that not only helps with communication, but can be surf the web and play games and videos and music and do even more. Imagine a device that has a “cool factor”. Imagine a device that fits in your pocket.

Can you imagine it? Well, it seems insurance companies can’t.

You see, if it can do something in addition to speech, it isn’t covered. If it hasn’t been approved yet, it isn’t isn’t covered. And, let’s face it, insurance companies aren’t that fast at approving new technology.

The funny thing is, this could save them money.

“We would not cover the iPhones and netbooks with speech-generating software capabilities because they are useful in the absence of an illness or injury,” said Peter Ashkenaz, a spokesman for the federal Centers for Medicare and Medicaid Services. Private insurers tend to follow the government’s lead in matters of coverage. Two years ago, iPhones and netbooks barely existed, so it may not be surprising that the industry has yet to consider their role as medical devices.

A dynavox system costs about $8,000. An system based on an iPod touch can be under $400 plus external speakers (I don’t think the speakers on the iPod touch would be loud enough if there is any background noise. But I could be wrong.)

One software product is Proloquo2Go, which works on the iPhone and iPod . I first heard about Proloquo2Go from a blog post on change.org by Dora Raymaker.

But, remember, insurance companies aren’t paying for the iPod becuase it isn’t tested yet. That and they don’t like devices that do more than one thing. They dislike devices that do more than one task so much that they pay a lot extra ($8,000 vs. $500) and, get this, they turn off the extra features.

DynaVox, a leading maker of devices for the speech-impaired, has computers that start at $8,000 and run Windows, just like 90 percent of all PCs. To meet insurance rules, DynaVox disables the general computing tools. After the insurer pays, customers can pay $50 to DynaVox to reactivate the full functions.

This strikes me as bureaucracy getting in the way. Other devices, which would save the insurance company money, should be easy to test and get approved.

I just don’t get what the hold up is.

Thanks to a very cool reader who pointed me at this story.

Addendum:

This story is being picked up by a few other bloggers as well:

Disability Scoop, Insurers Balk At Modern, Low-Cost Assistive Technology

I4U, Medicare Denies Useful $150 App in Lieu of $8000 Machine

gizmodo.com, Medicare Would Rather Buy $8000 Computer than $150 iPhone App.

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.

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.

2-Fatality HBOT Fire

14 Jun

Admittedly, the future for Francesco Martinizi (the boy who was very badly burned in a fire/explosion in a Florida HBOT clinic while apparently being “treated” for Cerebral Palsy), looked quite uncertain.

As I wrote previously:

Yes, this accident (fire/explosion) is tragic, very tragic. If Francesco indeed survives the injuries he’s apparently sustained, the next couple of months are likely to be very very rough. The situation certainly isn’t helped by the fact that there probably isn’t much in the way of good scientific evidence to support the notion that little 4 year-old Francesco should have ever been in such a facility in the first place.

His future is certain now. Francesco died Thursday.

Media reports:

Child Hurt In Chamber Explosion Dies In Hospital

Boy critically burned in Broward oxygen chamber explosion dies

Boy dies from injuries in hyperbaric chamber blast in Lauderdale-by-the-Sea

Boy injured in hyperbaric chamber blast dies

Previous entries at LBRB:

Fire, Fatal Injury, and Claims of Certification in an Independent HBOT Clinic

HBOT quackery maims 4 year old

Woman and child hurt in HBOT explosion

In Pace Requiescat, Francesco.

Question for commenters: What do you think about the mainstream media’s coverage of this fatality?