Minnesota, Autism, and "Unproven" Therapy

From the Minnesota Department of Human Services:

Two key studies about the needs of individuals with autism spectrum disorders have been posted on the DHS website. The studies address health care benefits for needed services and housing solutions for children and adults.

Autism Spectrum Disorders: Report to the Minnesota Commissioner of Human Services (PDF) is a study of treatments for autism conducted by the Health Services Advisory Council (HSAC). HSAC is panel of medical experts that advises DHS about health care benefits for enrollees in publicly funded programs.

Study on Housing with Supports for Children with Severe Autism (PDF) was completed by the University of Minnesota under a contract with DHS and takes a comprehensive look at housing and service options currently available as well as best practices.

The studies will inform DHS efforts to develop strategies specifically for people with autism.
This session Gov. Dayton has a budget proposal to establish a benefit set for children with autism spectrum disorder. The fact sheet, Reform 2020: Intensive Services for Children with Autism Spectrum Disorder (PDF), is on the DHS website. More information on autism and autism spectrum disorders is on DHS' website.

The Minneapolis Star-Tribune takes a negative view.  In a news article titled "Minnesota Urged to Cover Unproven Autism Care," Maura Lerner writes:

The state of Minnesota is being urged to pay for an intensive -- and controversial -- form of autism therapy for children on Medical Assistance, even though scientists are uncertain of its effectiveness.

The recommendation, from a state advisory panel, would create the first "autism-specific strategy" for thousands of families covered by the state health care program for the poor and disabled.

Under the plan, which would need both legislative and federal approval, the state would pay for a treatment known as early intensive behavior therapy, which advocates say is the best hope for children with autism. In some cases, the treatment can include up to 40 hours a week of one-on-one therapy and cost up to $100,000 a year.

As the report uses the term, this therapy includes ABA. While no one could deny that much more research is necessary, the use of the word "unproven" is highly questionable.  (Note that reporters do not write their own headlines.)   From the Kennedy Krieger Institute (click link to find citations mentioned below):

Over the past 40 years a large body of literature has shown the successful use of ABA-based procedures to reduce problem behavior and increase appropriate skills for individuals with intellectual disabilities (ID), autism and related disorders. Several review articles and meta-analyses have been published summarizing this large body of literature. Six of these articles (DeMyer, Hingtgen, & Jackson,1981; Herbert, Sharp, & Gaudiano, 2002; Hingtgen & Bryson, 1972; Kahng, Iwata, & Lewin, 2002; Matson, Benavidiz, Compton, Paclawskyj, & Baglio, 1996; Sturmey, 2002) collectively reviewed thousands of published studies spanning the years 1946 to 2001. Each of these reviews supported efficacy of ABA-based procedures in the assessment and treatment of problem behavior associated with autism, mental retardation and related disorders. Similarly, three meta-analyses (Didden, Duker, & Korzilius, 1997; Lundervold & Bourland, 1988; Weisz, Weiss, Han, Granger, & Morton, 1995) that collectively analyzed hundreds of studies published between 1968 and 1994 concluded that treatments based on operant principles of learning were more effective for reducing problem behavior displayed by individuals with ID as well as typically-developing individuals than were alternative treatments. The large body of literature reviewed in these studies provides empirical evidence indicating that procedures developed using ABA-based principles are effective at assessing and treating a variety of socially important behaviors engaged in by individuals with a variety of diagnoses. Furthermore, ABA-based approaches for educating children with autism and related disorders have been extensively researched and empirically supported (e.g., Howard, Sparkman, Choen, Green, & Stanislaw, 2005; Koegel, Koegel, & Harrower, 1999; Krantz & McClannahan, 1998; Lovaas,1987; McGee, Morrier, & Daly, 1999; Strain & Kohler, 1998)

The federal Office of Personnel Management agrees about the evidence behind ABA.

Mandate Legislation in Utah and Georgia

The Salt Lake Tribune reports on SB55, a Utah mandate measure by Sen. Brian Shiozawa, R-Çottonwood Heights:

Proven therapies involve applied behavior analysis (ABA), but Utah also runs short on ABA trained and certified therapists. Late last week, Shiozawa broadened his bill to allow state-licensed mental health providers to administer treatment as well.

That should help, Shiozawa said in a recent email.

"However, until we approve a mandate, few additional (ABA) therapists will train since there will be limited reimbursement," he added.

...
Sen. Todd Weiler, R-Woods Cross, cautiously voted to advance the measure out of committee last week, weary of complaints he’d fielded about the inadequacies of the pilot programs.

"The mandates have the potential to hurt small businesses," Weiler said, favoring a compromise that would extend the $50,000 coverage to age 12, and then decrease funding to $10,000 or $15,000 for older teens.

Another idea Weiler suggested was to cover three years of treatment for any child and "then you’re on your own."

"My goal is to mainstream these kids so they can have careers and go to college," Weiler said by phone Monday.

His senate colleagues remain divided on the measure.

"People are either for it or against it," he said. "Not many are sitting on the fence."

WJBF-TV reports on Ava's Law in Georgia:

Georgia Mandate Bill: Ava's Law

The Augusta Chronicle reports on insurance mandate legislation in Georgia:

Ava’s Law, which state Rep. Ben Harbin, R-Evans, plans to file this week, would mandate insurance companies pay for expensive, intensive services for children diagnosed with autism.

Currently, insurance companies in Georgia won’t pay for specialized therapy, including Applied Behavior Analysis, for children with autism. Parents must either accept the diagnosis and rely on minimal special needs services from the public school system, or pay for therapy that can improve the child’s abilities at an estimated $30,000 to $50,000 per year.

...

Ava’s Law is named for Ava Bullard, an 8-year-old Lyons, Ga., girl whose mother, Anna, has crusaded for the insurance coverage since her daughter was diagnosed with autism.
Like Solares, Bullard was told to expect to place her child in special education classes when she sought answers for Ava’s distant, non-verbal behavior.

Instead, she paid for the Applied Behavior Analysis treatment for Ava and, like Arturo’s case, saw “dramatic improvement,” Bullard says in a video being used to promote the legislation.
Ava is now in regular third-grade classes, Bullard says.

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.