A Critical View of Tom Harkin

Previous posts have discussed retiring Senator Tom Harkin's record on seclusion and restraint, as well as other disability issues. At National Review Online, Ari Schulman takes a critical view of the Iowa Democrat's record on science, including two issues of concern to the autism community: dietary supplements and vaccines.

Harkin also helped craft the 1994 Dietary Supplement Health and Education Act, which effectively allows companies to sell herbal remedies as dietary supplements, putting the burden on the FDA to prove a product unsafe rather than on the manufacturer to prove it safe. Although arguably a sound move with respect to simple supplements, this law also allows untested products to be marketed as drugs as long as they are accompanied by fine-print disclaimers that (wink wink) they don’t actually claim to treat any disease. As Consumer Reports puts it, this leaves “consumers without the protections surrounding the manufacture and marketing of over-the-counter or prescription medications.” The most notable example of the law’s danger was the sale of the weight-loss pill ephedra, which was banned by the FDA in 2004 after it was found to have caused severe side effects and death in a number of cases.

In addition to promoting dubious research, Harkin has lent credence to the idea that vaccines cause autism, repeatedly asking at a 2009 Senate hearing (around 1:54:00 in the video) why there have been no studies that randomly assign some children to be vaccinated or not vaccinated so that the relative rates of autism can be compared. Harkin essentially ignored the response by Thomas Insel, director of the National Institute of Mental Health, that the vaccine-autism link has been conclusively refuted by years of research and that such a study would be not only impractical but also unethical, as it would leave the control group unvaccinated against childhood diseases.

Typical of the rhetorical stance of those who continue to suggest a link between vaccines and autism, Harkin avoided any direct suggestion, instead hiding behind a guise of “just asking questions.” His questioning was praised by groups who tout the vaccine-autism link.

Autism Funding in Maryland

In Washington, DC,  WUSA reports on autism funding in Maryland:

Autism and Balls: An Update

A previous post dealt with an attention-getting device in Utah. The Salt Lake Tribune reports:

With a huge colorful pit of 18,532 balls — each representing a Utah child with autism — set up in the Capitol rotunda on Friday, advocates hoped to drive home the impact of the complex brain disorder on the state’s families.

While the pit served as a kid magnet Friday, Layton resident Mirella Petersen also plans to later give lawmakers jars stocked with gum balls: 639 for senators and 247 for House members — one for each autistic child in their districts.

The goal is to keep the dialogue going about SB 55, legislation that Sen. Brian Shiozawa, R-Cottonwood Heights is sponsoring to require insurers to cover autism treatment. The bill emerged from the Senate Business and Labor committee Thursday on a 5 to 2 vote after vigorous discussion.

Will Iowa Follow the Michigan Model?

The Des Moines Register reports on a bill in Iowa:

A key state lawmaker on Thursday said he’ll ask the Legislature to set up a $6 million account to help treat Iowans with autism.

Rep. David Heaton, R-Mount Pleasant, told a legislative panel he wants to create a system similar to one approved in Michigan. Instead of merely mandating that insurance companies cover certain programs for autism patients, a bill he is drafting would allow the insurance companies to submit therapy receipts to be reimbursed by the state for the key services, while the money lasts.

“So it’s a mandate, but then again, it isn’t,” Heaton said. He and others suspect a pure mandate would be blocked in the Republican-controlled House of Representatives.

Sen. Daryl Beall, D-Fort Dodge, also is pushing for legislative action.

Details of Heaton’s bill were disclosed as about 40 people, most of whom have children with the complex brain disorder, filled a meeting room at the Statehouse to call for action. They wore matching blue shirts that pointed out autism is treatable.

Autism and Balls in Utah

An earlier post discussed how Alaska activists used gumballs to make a point about treatment. The Salt Lake Tribune reports on a variation of the theme:

Advocates for autism insurance coverage will build a ball pit in the Utah State Capitol Rotunda Friday to represent the number of children affected by the brain disorder.

Using a giant container built by Home Depot and plastic balls from Toys ‘R Us, the Utah Autism Coalition wants lawmakers to know 18,532 Utah children have autism. The group will also distribute jars with 639 gumballs to each state senator and 247 balls to each representative, representing the average number of autistic children in their districts.

"We decided it takes a lot of balls to take on the insurance industry on this issue and so that’s exactly what we did. We bought a lot of balls," said Mirella Petersen, with the coalition and the state’s advocacy chair for the national group Autism Speaks, on a YouTube video as an appeal to appear on the Ellen DeGeneres show.

The ball will be in the Legislature’s court Thursday, when a bill that would mandate health insurance coverage of autism testing and treatment will be heard by the Senate Business and Labor Committee. The bill is sponsored by freshman Sen. Brian Shiozawa, R-Cottonwood Heights, who is a doctor.

Report on the Missouri Mandate

Missouri's Department of Insurance, Financial Institutions &  Professional Registration has issued a report on the state's autism insurance mandate.  The following is from the executive summary (links and emphasis added):

This is the second annual report to the General Assembly related to insurance coverage for Autism Treatment and Applied Behavioral Analysis. The findings of the first annual report   reflected the fact that 2011 was a transitional year during which much of the infrastructure necessary to deliver the mandated benefits was developed. As expected, data show that the benefits of the mandate were more fully realized in 2012, while the costs as a percent of overall health care costs remained negligible.

1. Coverage. During 2012, all insureds in the small and large group markets were covered for autism and the associated ABA mandate. A much lower proportion, less than one-third, received similar coverage in the individual market, including individually-underwritten association coverage. A few large providers of individual insurance coverage extended autism coverage to all of their insureds. However, Missouri statute only requires autism benefits as an optional coverage in the individual market, and most insurers do not provide it as a standard benefit. For those insurers that do not provide the coverage as a standard benefit, only a negligible number of insureds purchased the optional autism rider.

2. Number impacted. Over 2,508 individuals received treatment covered by insurance for an ASD at some point during 2012. This amounts to 1 in every 548 insureds, ranging from 1/2,765 in the individual market to 1 / 438 in the large group market. These figures are consistent with estimates in the scientific literature of treatment rates.

3. Licensure. The first licenses for applied behavior analysis were issued in Missouri in December, 2010. Between 2011 and 2012 the number of individuals that held Missouri licenses as a behavior analyst grew by 44 percent. As of January 17, 2012, 161 individuals were licensed, and an additional 24 persons obtained assistant behavior analyst licenses.

4. Claim payments. Between 2011 and 2012, claim costs incurred for autism services increased from $4.3 million to $6.6 million, of which $3 million was directed to ABA services. These amounts represent 0.16 percent and 0.07 percent of total claims incurred, consistent with initial projections produced by the DIFP.2 For each member month of autism coverage, total autism-related claims amounted to $0.38, while the cost of ABA treatment amounted $0.17.

5. Average Monthly Cost of Treatment. For each individual diagnosed with an ASD that received treatment at some point during 2012, the average monthly cost of treatment across all market segments was $222, of which $101 consisted of ABA therapies. The average, of  course, includes individuals with minimal treatment as well as individuals whose treatments very likely cost significantly more.

6. Impact on premiums. Given that treatment for autism represent less than 0.2% of overall claims costs, it is very unlikely that such costs will have an appreciable impact on insurance premiums. However, because the DIFP has no authority over health insurance rates and does not receive rate filings, a more exact assessment of the impact of the mandate on rates cannot be provided.

7. Market Segments. This study focuses upon the licensed insurance market (i.e. those entities over which the DIFP has regulatory jurisdiction). Many employers provide health insurance by “self-insuring,” that is, by paying claims from their own funds. Such plans are governed under the federal Employee Retirement Income Security Act (ERISA), and states have little jurisdiction over private employers that choose to self-fund. The Missouri statute does extend the autism mandate to the Missouri Consolidated Health Care Plan (MCHCP), which covers most state employees, as well as all self-funded local governments and self-insured school districts.

The advocacy group Autism Speaks maintains a list of self-funded private employers that have chosen to voluntarily provide coverage autism and ABA therapy to their employees. Among this group are many of the most recognizable “high-tech” companies, including Microsoft, Intel, Adobe, Cisco, IBM, Apple, Yahoo and E-Bay. From the healthcare field are the Mayo Clinic and Abbott Laboratories. Additional companies come from a variety of sectors, from Home Depot to Wells Fargo. Because the DIFP lacks jurisdiction over private self-funded employers, the number of Missourians receiving autism benefits under private self-funded plans is unknown.

Autism Speaks created a “Tool Kit” for employees of self-funded plans to approach their employers about adding benefits to their company health plan. The Self-Funded Employer Tool Kit can be found at: http://www.autismspeaks.org/sites/default/files/docs/gr/erisa_tool_kit_9.12_0.pdf 

Housing and ASD Adults in New Jersey

NJ Spotlight reports on a bill (S-254) released on Monday by the Senate Health, Human Services and Senior Citizens Committee. With thousands of ASD adults on a waiting list for placement, some urge a more flexible approach to housing.

Right now, autistic adults have one primary option: community-based housing in which they share a group home with residents who are intellectually disabled. But families are concerned that adults with autism receive an appropriate level of care geared to their specific needs.

The bill posits several alternatives, including three highlighted by supporters of the legislation. The first would allow a family to buy a house for an autistic adult. When the family gets too old to help care for that adult, the state would take over the house and the autistic adult would be able to continue living there.

The second approach would establish assisted-living facilities with individual apartments for autistic adults: 24/7 care would be provided by the state.

In the third approach, an adult with autism could live with a host family, not unlike a foster family.
...
Sen. Robert M. Gordon (D-Bergen and Passaic), the bill's sponsor, said that if the state had more flexibility in how it delivers services, it would be in a better position to address the demand for residential placement and other needs.

Sen. Dawn Marie Addiego (R-Atlantic, Burlington, and Camden) noted that Gov. Chris Christie’s administration is concerned that the bill would ratify residential housing arrangement that could endanger federal funding.

An aide to Gordon said he is working with the administration officials to incorporate their concerns into the bill. Addiego voted to release the bill from committee, but said she reserved the right to vote against it when it comes to a vote in the full Senate.

Peter Bell on "Autism Live"

Peter Bell, executive vice president for programs and services at Autism Speaks, appeared last week on "Autism Live," an Internet program from the Center for Autism and Related Disorders.  Among other things, he discussed the group's push for insurance mandates:

Split in the Anti-Vaccine Movement

Factionalism besets all social movements. Respectful Insolence reports on a split in the anti-vaccine movement.  Jake Crosby used to work with SafeMinds, but is now denouncing the group.

What I’m referring to is an article that Jake mysteriously posted a link on his Twitter feed with the cryptic caption New Post, but not on @AgeofAutism: @safeminds Steals The Show, Literally…, and, indeed, the link led to a post by him not on his usual home, that wretched hive of scum and quackery, that antivaccine propaganda crank blog supreme, Age of Autism. As hard as it is to believe, Jake apparently found a hive of scum and quackery even more wretched than AoA, a crank website even more supreme than the antivaccine home on the web, with a webmaster even more detached from reality than any blogger on AoA. I know, I know, it’s really hard to believe, but it’s true. Don’t believe me? What if I told you that Jake’s latest opus appears on Patrick “Tim” Bolen’s website, the Bolen Report. So full of pure pseudoscience, quackery, and nonsense, all held together with the glue of even purer bile, is Bolen’s website, that I hesitate to link to it, even with the obligatory rel=”nofollow” tag. But link to it I will, because you just have to see how Jake has, as Science Mom tells us, thrown his former “mentors” under the bus. In the process, Jake utterly betrays them by sharing excerpts of private e-mails from the mailing list of the antivaccine group SafeMinds, as well as from private e-mails sent by “luminaries” of the antivaccine movement such as Mark Blaxill, Lyn Redwood, Sallie Bernard, Kate Weisman, and Eric Uram. It is truly a wonder to behold. No wonder Liz Ditz has saved screen shots, lest Jake be tempted to throw his screed down the ol’ memory hole. (Personally, I prefer to save web archives, but that’s just me.)

...
Remember a couple of months ago? That was when Representative Darrell Issa, who currently chairs the House Committee on Oversight and Government Reform, the committee that the most antivaccine Representative ever, Dan Burton, used to chair, held one last Congressional hearing on vaccines autism. Given that Burton had decided to retire at the end of the last Congress, it was basically a last antivaccine hurrah, a farewell present for Issa’s old buddy Burton, whose tenure as chair of the Oversight Committee was remarkable for several hearings in which antivaccine “scientists” and activists were allowed to let their pseudoscience and conspiracy theories fly free in Congress. That’s because Dan Burton is a true believer, utterly convinced that vaccines caused is grandson’s autism. What a nice retirement present from a friend!

In any case, as you might expect, the hearing, held on November 29, turned into a fiasco. That, of course, was not unexpected. How could it be otherwise? What was unexpected is that it wasn’t as loony as a typical Burton vaccine hearing. Also unexpected was something that Jake revealed, namely the efforts to which SafeMinds went to try to appear sane and rational for the hearing. Where Jake wanted to go charging in with testimony laden with multiple antivaccine conspiracy theories, Blaxill and the rest of the SafeMinds leadership clearly wanted to keep Jake as far away as possible from that meeting room. At one point, Jake recounts how Kate Weisman, SafeMinds’ Communications Committee Chair, suggested that he “walk the halls”:

Mandate Bill in Utah

The Salt Lake Tribune reports:

On Friday, freshman Sen. Brian Shiozawa, R-Cottonwood Heights and past president of the Utah Medical Association, released SB55, which would require health insurance plans to cover autism treatment.

If passed, Utah would join 32 other states that require insurance coverage, according to the national advocacy group Autism Speaks, which endorsed the bill.

That’s a big "if." Utah’s autism community has been trying for years to mandate coverage, but last year saw their efforts stymied by a bill that instead created three pilot programs treating about 300 children under the age of 6.

Shiozawa, an emergency physician, was unavailable for immediate comment Friday.

But Mirella Petersen, president of Utah Autism Coalition, which is pushing for insurance coverage, said the senator recognizes "we’re in a triage situation. We can’t do much about it [autism] if we’re not going to offer effective, early treatment."

 Autism Speaks endorses the bill:

The Shiozawa bill would cover applied behavior analysis (ABA) up to $50,000 a year for children through age 8, then up to $25,000 a year though age 17. The bill would take effect July 1 of this year.

“...
An autism insurance reform bill enacted last year created a test state program for about 300 children funded through state Medicaid funding and voluntary contributions from the private sector. The Utah Autism Coalition has estimated over 18,000 Utah children have autism.

According to reports in The Salt Lake Tribune, the Medicaid program was hindered by low reimbursement rates which limited the number of providers, while the private sector contributions were slow to materialize. In the meantime, it cited 20 cases of parents surrendering their children to the state because they could not afford to provide them the autism treatments they needed.

Shiozawa's bill would require state-regulated health plans to cover the diagnosis and treatment of autism, including speech, occupational and physical therapy as well as pharmaceutical benefits.

Small businesses would be granted a waiver if they can demonstrate the autism coverage increases their premiums over 2.5 percent over a 12-month period. Actual experience in other states which have enacted autism insurance reform shows the impact has been under 1 percent.

Ne'eman on Violence, Mental Health, and Discrimination

Ari Ne'eman of the Autistic Self-Advocacy Network, speaks to Al Jazeera about mental health policy issues arising in the wake of the Newtown shooting:




An excerpt:

Well, a number of folks reported from our membership an increase in discrimination. Many families reported that schools were now looking at their children with additional suspicion. People who had perhaps recently made the decision to come out of the closet about their diagnosis at work, or in their relationships, suddenly started to feel that may have been a mistake and that discrimination might be on the rise. One of [the] things that I found particularly concerning is that there was an effort on the part of some to try and say 'well we don’t really need to have a conversation about gun violence in this country, all we need to do is have a conversation about people with psychiatric disabilities'. And, frankly, that’s not the case. If we look at the research and evidence, there is no relation between Asperser’s syndrome and violent crime. If we look at the broader scope of disability, say another diagnosis, psychiatric disability or mental illness, we find a similar lack of correlation. In fact, even when we look at the small subset of people with psychiatric disabilities who some studies have found to have an increased correlation with violent crime, that correlation disappears when we control for substance abuse. That’s actually one of the only things that does tend to correlate with violent behavior—a history of substance abuse, but not so much a mental illness or an autism spectrum disorder diagnosis. 

IACC and the Affordable Care Act

Autism Speaks reports:

The Interagency Autism Coordinating Committee (IACC) has pledged to take a more assertive role in federal autism policy, starting with the issue of assuring ABA coverage is included in all state health insurance exchanges created under the Affordable Care Act (ACA).

Meeting Tuesday in Bethesda, MD, IACC members concluded that the IACC should accomplish more than its minimum charge of drafting an annual update to the Strategic Plan for Autism Research. It was decided that the committee should take an active role in advising the U.S. Department of Health and Human Services (HHS) about public policy affecting the autism community.

The IACC’s Services Subcommittee will meet soon to consider a draft letter to HHS Secretary Kathleen Sebelius advising her on the ACA issue. Although required by the law, only half the states so far are including behavioral health treatment, including ABA (Applied Behavior Analysis), in their essential health benefits packages. The committee members felt strongly that there was a unique and timely opportunity to address this issue and that the IACC had the expertise and charge to advise the HHS Secretary.

Chair in Adult Autism

A release from Rutgers:

Two families, longtime friends who between them have three sons on the autism spectrum, have made a $1.5 million gift to Rutgers University to endow a faculty position in adult autism, a field in which there is a critical shortage of trained professionals and support services.

The Karmazin and Lillard Chair in Adult Autism is being established by Dina Karmazin Elkins, daughter of Mel Karmazin, philanthropist and the former CEO of Sirius XM Radio; Michael Lillard, Chief Investment Officer of Prudential Fixed Income, and his wife, Amy.

The endowed professorship is unique in that it is specific to adults with autism and will address much needed intervention and research for adults with autism spectrum disorders from both academic and training perspectives. It will be based at Rutgers University’s Graduate School of Applied and Professional Psychology, (GSAPP), which for decades has been providing leading-edge services to children and adults with autism spectrum disorders and other developmental disabilities.    

“The Graduate School of Applied and Professional Psychology has a strong desire to work on finding innovative ways to help adults with autism, a goal that is close to our hearts,” said Amy and Mike Lillard, whose two teenage sons are on the autism spectrum.  “The school’s history of providing services to those with disabilities and educating students to continue that work makes Rutgers an ideal place for a chair in adult autism.”