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IACC services subcommittee meeting tomorrow

23 Jul

The services subcommittee doesn’t get the blogging attention as the full committee meeting. No chance for a discussion of “epidemics” or vaccines. It is well worth the time to listen in, for whatever time you can, to see how this process works. Even more, it is well worth being informed so that you can get involved.

I just got this via email:

A Town Hall Meeting of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee

A Town Hall meeting of the IACC Services Subcommittee will take place on Friday, July 24, 2009 from 10:45 a.m. to 2:00 p.m. CT at the 2009 Autism Society National Conference

Pheasant Run Resort and Spa
4051 East Main Street
St. Charles, IL 60174

The meeting will be open to the public, with attendance limited to space available in the main room and overflow room. The meeting  will begin with a 30 minute presentation by members of the IACC, followed by an open microphone session in which comments may be shared on topics related to services for people with ASD. Topics of particular interest include: Questions 5 and 6 of the IACC Strategic Plan for ASD Research: “Where can I turn for services?” and “What does the future hold?” Additional suggested topics: Services for adults, community issues, family support, school services, provider services, infrastructure, evidence-based services and supports, health and safety, early diagnosis, transition to adulthood, therapies and treatments, and health and dental care.

The latest information about the meeting, including online registration and remote access can be found at: http://iacc.hhs.gov/events/2009/services-subcommittee-town-hall-mtg-announcement-July24.shtml. The meeting flyer can also be found on the IACC events web page.

Remote participation: Written comments on ASD services issues are welcome in advance, during and after the meeting until July 31, 2009 at: iaccservices@mail.nih.gov. Written comments received before or during the meeting may be shared with the audience by the moderators as time permits.

For more information about the IACC, please visit www.iacc.hhs.gov.

The IACC also can now be found on Twitter (www.twitter.com/IACC_Autism).

The Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8200
Rockville, MD 20852
Phone: 301-443-6040
IACCServices@mail.nih.gov

Autism research funding: who is paying and how much?

21 Jul

Ever wonder who is funding autism research and where the money is being spent? If you were watching/listening to the IACC meeting this week, you would have answers to a lot of these questions.

To answer the most basic question, the current annual expenditure on autism research in the U.S. is $225,000,000.

Most of us assume (and we are right) that in the US, the Government is the biggest source of research funding. But as it turns out, fully 35% of the research funding for autism in the U.S. is from private sources. That works out to over $78M in autism research funding is from private sources. Pretty impressive.

Anyone want to venture a guess as to who is the largest private source? Autism Speaks would be a good guess. It was mine. A.S. is a respectable second with $31M, but the number one private source of autism funding is the Simons Foundation, with $43M per year.

In case you want to see the entire breakdown of funding sources, here it is:

Autism Funding by Agency

Autism Funding by Agency

So, now we know where the money is coming from. The next question is “where is it going?” There are pages of detailed information on that in the research portfolio discussed at the IACC, but let’s take the summary view. In specific, NIH collated the research by category. They used the categories from the Strategic Plan:

I. When Should I Be Concerned?
II. How Can I Understand What Is Happening?
III. What Caused This To Happen And Can This Be Prevented?
IV. Which Treatments And Interventions Will Help?
V. Where Can I Turn For Services?
VI. What Does The Future Hold?

All of these categories are important and each of us will have a different view on the priorities. The issues I want to see get more funding involve figuring out how best to support autistics. In order to do so, I feel the research community has to fill a big gap in their knowledge when it comes to adult autistics.

Or, to put it in Strategic Plan categories, I think category V (where can I turn for services) and, mostly, VI (What does the future hold) need more attention and funding. As autism research funding grows, we should be expanding funding in these areas.

How is funding divided now? Well, here’s a pie chart:

Pie chart showing how autism research funding is distributed.

Pie chart showing how autism research funding is distributed.

Obviously the funding agencies don’t agree with me on priorities. Category V gets 1% of the funding, and category VI gets 5%.

Let’s put this another way: there are by some estimates roughly 1.5M autistics in the U.S. (I know that’s debated, but let’s go with it for a rough estimate). We are spending about $9M on understanding adults with autism. Roughly, $6 per autistic. Does that make sense?

Or, to put it another way, we have 300M people in the U.S.. Each of us is spending, what, $0.005 (one-half cent) a year on studying adults with autism? Surely we can do better than that.

It is worth stopping for a moment to acknowledge that the Strategic Plan is just getting started. The funding levels shown in the pie chart are going to change as the Plan is implemented. But, will research on adults be given high priority?

There are a lot of blog posts and news stories lately talking about how we as a society are not prepared for the “tidal wave” of autistics about to become adults. If that is your position, why not call for better research on adults? Why not call for the sorts of papers that will help you and your soon-to-be-adult children advocate for better services?

Joint Letter from Self-Advocacy Organizations to Secretary Sebelius

20 Jul

There has been a lot of online discussion about how Health Care reform will affect the autism communities. This has included a number or recent posts on this blog.

Much of the discussion here and elsewhere has focused on children and, especially, on ABA. There is a lot more to autism and a lot more to health care than just these subjects. Case in point, the letter below.

A number of self-advocacy groups have sent a joint letter to the secretary of the U.S. Department of Health and Human Services (Secretary Kathleen Sebelius). One of these groups is ASAN, the Autsitic Self-Advocacy Network.

(Edit) This is an effort to bring in issues from the Community Choice Act, which includes much that the CLASS act has left out. ASAN has an action alert on this. Please, take the time to sign the online petition.

This is something we all should be getting behind.

July 10, 2009 VIA Facsimile & E-Mail

The Honorable Kathleen Sebelius

Secretary

U.S. Department of Health & Human Services

200 Independence Avenue, SW

Washington, DC 20201

Dear Secretary Sebelius:

Thank you for your leadership this week in bringing the issue of Long Term Services and Supports back into the health care reform discussion by expressing support for including the Community Living Attendant Services and Supports (CLASS) Act in the health care reform legislation currently making its way through the Congress. As leaders of grassroots disability organizations, we write to request a meeting so that we can open up a line of communication with you and your team as health care reform takes center stage.

The disability community has advocated that reforming Long Term Services and Supports (LTSS) is a critical component of any health care reform initiative. As you know, adequate home and community services are not only preferred by seniors and people with disabilities, but also save money by avoiding serious secondary medical conditions, unnecessary trips to the emergency room, hospital stays and doctor visits. With your letter supporting inclusion of the CLASS Act, the administration has taken a first step in addressing this critical issue.

Although the CLASS Act would expand resources available to individuals and families to purchase LTSS to enable them to remain in their own homes in the community, this legislation does not:

* eliminate the institutional bias in the Medicaid program which forces Americans with disabilities and older Americans into nursing facilities and other institutions;

* meet the needs of seniors and people with disabilities who are already in nursing facilities or other institutions or who are at immediate risk of being forced into such a setting;
* address the needs of seniors and people with disabilities who will require LTSS but won’t qualify for the proposed benefit because they are not working;
* address the needs of persons who acquire disabilities earlier in life and won’t qualify because they cannot secure employment;

* provide any actual assistance for five years after it is enacted because people must contribute for five years before they can receive any benefit; or

* meet the needs of persons with significant disabilities who would require more assistance that would be provided under this benefit.

That’s why we need the Community Choice Act (S683/HR1670).

The Community Choice Act (CCA) would eliminate the institutional bias in Medicaid and give a real option for seniors and people with disabilities who want to live in the community with LTSS. It would address the needs of individuals who are at risk of institutional placement and give people who are already in such settings an opportunity to return to community living. CCA would provide immediate relief to Americans who are struggling with this issue, whether they were born with a disability, acquired one later in life, or are helping a family member. CCA provides a safety net for people with the most significant disabilities and allows people with incomes above the Medicaid level to buy into this program. Ultimately, the Community Choice Act brings federal LTSS policy in line with the Supreme Court’s Olmstead v. L.C. decision, giving every American with a disability the right to live in the most integrated setting.

We are writing to urge that the administration express its public support for including the Community Choice Act in the Affordable Health Choices Act. As a Presidential candidate and as a United States Senator, President Obama has expressed his support for and cosponsored the Community Choice Act. This legislation has a broad base of support within the aging and disability communities. In fact, over 80 national aging and disability organizations have endorsed this legislation.

We look forward to working with you to end the institutional bias so that every American is given a real choice in how and where they receive long term services and supports. We respectfully request a meeting with you this month to discuss how we can work together to accomplish our mutual goals.

Sincerely,

Bruce E. Darling

Organizer, ADAPT

Andrew J. Imparato

President and CEO, American Association of People with Disabilities

Ari Ne’eman

President, The Autistic Self Advocacy Network

Brenda Battat

Executive Director, Hearing Loss Association of America

Nancy J. Bloch

Chief Executive Officer, National Association of the Deaf

Kelly Buckland

Executive Director, National Council on Independent Living

Daniel B. Fisher, MD, PhD

Steering Committee Member, National Coalition of

Mental Health Consumer Survivor Organizations

Chester Finn,

President, Self Advocates Becoming Empowered

cc: Henry Claypool, Director, Office on Disability

Autism mum needs help of autism community – please help

18 Jul

This is so important I am re-running this post. Kev blogged the story of Autism Mum Melissa who lost nearly everything in a fire.

The chipin widget isn’t showing any money collected so far. I know this is wrong because I know that I donated. I also know that more is needed. It’s time to lend a helping hand. As Kev stated, this is something that transcends the divisions in the autism communities.

I tweeted a few days ago about the awful thing that has happened to my friend Melissa, an American single mum with two sons of whom one is autistic. But nothing can say it as powerfully as her own words.

Is where I am.
To say I’m overwhelmed is an absolute understatement.

My house burned down today.

Yes, I’m serious.
We’re fine- everyone made it out safe.
But our cat did not make it.

I don’t really even know what to write at the moment, other than my heart is breaking.
You think you’re prepared for such things, “if ever there’s a fire, I’m grabbing this, this, and this,”
Not so.
We have our pajamas.
I grabbed kids and ran like hell.

On top of that, Companion’s car was engulfed in flames.
My car literally exploded.
Homeless and carless all in one night.

We are currently at my parent’s.
I will update when possible.

Please keep us in your thoughts and prayers.

I’ve set up a chipin widget (see right. IE6 users scroll down, sorry). This is linked directly to Melissa’s PayPal acct. Please contribute as much as you can. You do not need a paypal account to help.

Melissa’s lads also wear clothes in the following sizes: 10/12 and 4T. I don;t know how to start getting things directly to her yet but please put anything you have to one side and I’ll return to this subject hen I know more.

Please help. I’d really like to have Melissa get a sizeable amount of money from the autism community. This goes beyond any neurodiversity/vaccine/genetic research issue. Please help and please pass this on. Retweet if you’re a Twitter user and blog about it yourself if you’re a blogger.

Thanks you in advance.

Jenny McCarthy: making autism advocates the butt of comics

18 Jul

There are many reasons I have for being vocal about my objections to Jenny McCarthy. Public health, that’s obviously a big one. Making the rest of the world look at the “autism community” as a bit of a joke, well that’s another.

With a hat-tip to Brian Steinberg of Examiner.com, cue the comic strip “Soup to Nutz”.

Soup To Nutz

It isn’t like they don’t know who is most responsible for giving Jenny her platform either:

Soup To Nutz

Mr. Steinberg closes his post so well I just have to quote it as my closing:

Look, it’s one thing to make fun of the president or a prominent politician, or even make reference to a big-name movie star or starlet. But it’s quite another to take on a celebrity with a pet cause or peeve. Mr. Stromoski is on firm ground taking on Ms. McCarthy’s credentials. I just wonder if her fans will treat him courteously.

Care Clinics and Doctors Data sued

17 Jul

An alternative medicine clinic specializing in autism, Care Clinics of Austin Texas was recently raided by the FBI and the IRS and appears to be shut down.

According to the Quackwatch website In another action, Care Clinics and Doctor’s Data are being sued:

CARE Clinics, of Austin Texas, its owner Kazuko Curtin, its subsidiaries, and Chicago-based Doctor’s Data have been sued for fraud, negligence, and conspiracy

The complaint is being brought by an adult, apparently not autistic, who claims to have been misdiagnosed for heavy metal poisoning. In a step that could have a big impact on the autism alternative-medicine community, the petitioner is charging that the method of testing for heavy metals, specifically that used by Doctors Data, is fraudulent.

It’s worth repeating: it is hard to underestimate the impact of a successful suit against challenge testing to “diagnose” mercury poisoning.

Congress says no to misleading autism information

16 Jul

Last year Mr. Mark Blaxill and Mr. David Kirby were given the privilege to misinform members of the U.S. government and their aids. Besides the fact that Mr. Blaxill has yet to retract his position (and pseudo-papers) claiming that autism is mercury poisoning, and the mish-mash that Mr. Kirby makes of science, there is the curious incident of the misquoted quote. Mr. Kirby made a serious error in his talk, misquoting a statement by the NIH, and was caught by a congressional staffer (an M.D. who was obviously well prepared).

It isn’t like this sort of inaccuracy was something new. Mr. Kirby was having a lot of difficulty with accuracy about this subject around that time. Epiwonk discussed in great detail how serious Mr. Kirby’s misinterpretations are here and here.

I don’t really understand Mr. Kirby sometimes. Epiwonk’s first blog post caused Mr. Kirby to admit he made a mistake and “pull” his blog post. Mr. Kirby posted a second, with this statement:

NOTE: My original post on this topic mischaracterized the 2003 CDC vaccine investigation as an “Ecological Study,” which it was not. I am reposting this piece to reflect that information accurately, but also to point out that many of the weaknesses identified in the CDC’s data and methods apply to the published 2003 “retrospective cohort” study, as much as they do to any future “ecological” ones. I regret and apologize for the error.

He apologizes for the error. He removed the direct link to the post from his main webpage. But, did he pull the blog post which even he declares was “in error”? Nope. It is still on the Huffington Post for all to see. Hence my quotes in the phrase “pull” his blog post.

What about the misquote in Mr. Kirby’s lecture? Well, last I checked it was still in the power point presentation he has on his website. No comment, no correction.

I’m sure Mr. Kirby is planning on being more careful this year. This year? Yes, he and Mr. Blaxill are being hosted to give another briefing to congress.

Last year, Mr. Kirby and Mr. Blaxill packed a small room. This year, they seem to be struggling to get people to fill even that small space. How do I know? Well, the good people at the Age of Autism blog have supplied us with a list of the people in the Congressional Coalition for Autism Research and Education (C.A.R.E) who will be attending, and who attended last year but not this year.

Want to run some stats? My unofficial and highly unscientific accounting based on the information on the Age of Autism blog:

C.A.R.E. has 11 offices attending who saw the briefing in 2008 returning in 2009.

However, C.A.R.E also has 26 offices declining the opportunity to observe Mr. Kirby and Mr. Blaxill for a second time. (including, oddly enough, Dan Burton)

Yep, you read that right. 70% of the C.A.R.E. offices who heard the briefing last year have decided to give it a pass this year. I actually doubt it is because Mr. Kirby was caught in a fabricated quote last year. My guess is that it’s just because Mr. Kirby and Mr. Blaxill basically had little accurate information of value to say last year, and little different to say this year.

Continuing with the stats:

C.A.R.E. has 8 offices attending for the first time in 2009.

C.A.R.E. also has 110 offices who did not attend in 2008 and are not attending now.

Summarizing these numbers, we see that, by far, most of C.A.R.E is not attending. ( I count 17 offices attending out of 153. Or, 89% are not attending).

Again, I don’t think it is because of Mr. Kirby’s lapse. The lack of a clear, scientifically sound message is much more likely the reason. Congress heard what Mr. Kirby and Mr. Blaxill have to say and there is no point in hearing it again.

Last year’s congressional briefing was the subject of three blog posts here:

Vaccines on the Hill. Vaccines on the Hill II. Vaccines on the Hill III.

FBI and IRS shut quack clinics

16 Jul

Readers may remember the investigations by health insurers of CARE clinics. Now the FBI have become involved and CARE clinics have shut.

CARE Clinics, an autism clinic on Bee Cave Road that was being investigated by insurance companies over insurance claims, was raided by the FBI and IRS agents today.

The clinic has been closed, perhaps permanently.

Agents are removing dozens of boxes of documents, but they declined to say what they are looking for. They directed inquiries to Special IRS Agent Mike Lemoine, who did not immediately return a call.
[…]
CARE clinics mainly treated children with autism using alternative therapies typically frowned on by mainstream doctors. Though some parents who brought their children to CARE Clinics say they’ve seen improvements in their child’s autistic behaviors, critics say the clinic uses therapies that lack strong scientific evidence. The clinic commonly uses intravenous chelation on patients, a controversial treatment that introduces a chemical solution into the body to bind with a metal or other substance to be removed.

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.

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