Marijuana in Oregon

In Eugene, Oregon, KVAL reports on the use of medical marijuana to treat a boy with autism and other conditions.

CA Insurers Not Following Mandate Law

Previous posts have looked at California's mandate. Alan Zarembo reports in The Los Angeles Times:

Insurers have been skirting their obligation under recently enacted state law to provide costly behavioral therapies for autism, according to the Department of Insurance, which is proposing emergency regulations aimed at enforcing the law.

In July, California joined more than two dozen other states in requiring private insurers to cover such treatments when medically necessary.

But state officials said they have received dozens of formal complaints that insurers have been delaying and denying coverage by imposing limits on how much therapy a child can receive and who can provide it, and in some cases by requiring extensive cognitive testing before treatment can begin.

The emergency regulations stipulate that those are not valid justifications for denying treatment. Officials said they planned to file the proposed rules Thursday with the state Office of Administrative Law, which will decide in March whether to put them into effect.

"Behavioral therapy is a medical treatment and has to be covered," Insurance Commissioner Dave Jones said in an interview.

The Four Kingdoms

NIMH director Thomas Insel writes:

In the spirit of mapping the autism landscape and finding some common ground, I suggest four perspectives that currently separate the communities interested in the autism spectrum. The language, assumptions, literature, and societies that have grown up around each of these perspectives are so distinct, they have begun to represent different countries or kingdoms. Each has its own truths. And each too often fails to understand or even recognize that their truths may not apply to all kingdoms.

Illness
Autism was first described as a developmental disorder by Leo Kanner, a child psychiatrist, in 1943. In the 70 years since, research on autism has largely focused on autism as an illness. The illness kingdom is largely populated by clinicians, researchers, parents, and some people with autism. They view autism as a brain disorder in which the language of medicine applies, with a focus on improving diagnosis and interventions, and cure as the ultimate goal.
...
Identity
Self-advocates with autism, like self-advocates in the deafness community, have replaced the medical model of illness with the language of diversity and identity. They, along with many in the educational and disability communities, view autism as a difference in need of accommodation, not a disorder in need of cure.
...
Injury
One of the more heated arguments surrounding autism has been on the purported role of vaccine injury as a cause. This kingdom was founded by parents who report marked regression after the 18-month vaccination series, when their previously interactive, communicative toddler withdraws and stops speaking.

... 

Insight
Just as scientists have studied blindness to understand the visual system, scientists in the kingdom of insight assume that the study of people with social and communication deficits is a remarkable opportunity to understand the social brain. This kingdom belongs to social neuroscientists, using tools from cognitive science, neuroimaging, and neuroanatomy.

A Story of Recovery

KTLA in Los Angeles reports on CARD and a story of autism recovery. (The station uses the less accurate term, "cure.")

Georgia Mandate Bill Stalls

As part of its series on autism, Atlanta's WXIA covers parents lobbying the Georgia Legislature

In the video, State Senator Renee Unterman ( Renee.Unterman@senate.ga.gov   ) says that she does not believe that the premium impact of the legislation would be only 32 cents a month.  (See here for the data.)



The effort fell short, as the station also reports:

Two key lawmakers said Monday that the bill requiring insurance coverage for autism would likely get shelved this legislative session. And according to Autism Speaks, the bill may not be taken up again until 2015. 

Publicly, the autism insurance bill had the enthusiastic backing of supporters from around Georgia, who rallied at the Capitol Monday to lobby for its passage. But as they swarmed the Capitol, the measure was getting treatment likely to kill it for the year.

"There are powers that be that don't want to see it moving," said Rep. Ben Harbin (R-Evans), sponsor of the bill known as Ava's Law.

"As far as for this session, it won't happen," said Rep. Richard Smith (R-Columbus), chairman of the House insurance committee. Smith all but sealed the bill's fate fate by assigning the bill to a study committee.

Smith says his hands were tied by a law passed in 2011. It requires that any bill with a new insurance mandate go to a committee called a mandate committee.

Unterman is on the mandate committee.

Nebraska Mandate Bill

KOLN-TV in Lincoln covers Nebraska mandate legislation, LB 505 by State Senator Colby Coash: 

Coash attempted the legislation in 2012, but it didn't pan out. Insurance companies were on the fence and their lobbyists for insurance companies raised concerns.

Those who oppose the bill say it's just too expensive and that insurance companies can now voluntarily cover these costs.

Insurance company Blue Cross and Blue Shield of Nebraska issued a statement to 10/11 about LB 505 saying, “We will continue to work with legislators and those in the community impacted by autism to help address concerns over coverage, while making sure there is a level playing field between all health insurance companies. Some requirements of the Affordable Care Act and state mandates may add complexity to LB505 and will likely need to be discussed and understood by all parties.”

If passed Nebraska would be the 33rd state to require such coverage. During the scheduled upcoming hearing, Senator Coash is expecting a little opposition, but he says in the long run this bill will save money.

Sen. Colby Coash said, "This is not going to break the bank for insurance companies. My experience has taught me that this kind of treatment is giving people with autism their life back.

It's that big of a deal."

The first hearing on LB505 is scheduled for Tuesday, Feb. 26, before the Senate Banking, Commerce and Insurance Committee.

Autism and the Final ACA Rules

A Thursday release from Autism Speaks:

The expanded access to health care promised through the Affordable Care Act (ACA) would fall short with autism under new federal regulations that fail to require every state to include coverage for behavioral health treatment as the law required, said Peter Bell, Autism Speaks' executive vice president for programs and services. Autism is the fastest growing developmental disability in the United States with an estimated 1 of every 88 children now diagnosed with an autism spectrum disorder.

Bell was responding to final rules made public yesterday by the U.S. Department of Health and Human Services (HHS) regarding the 10 "essential health benefits" every state must include in their new ACA health insurance marketplaces that start operation next year. Even though coverage for behavioral health treatment, including applied behavior analysis (ABA), was required by Congress, as many as 24 states continue to lack this coverage under the HHS regulations.

Among these states are Pennsylvania, Florida and Virginia which require the coverage by law for state-regulated health plans, but would not require it through their new ACA health plans. A total of 32 states have passed autism insurance reform laws requiring autism-related coverage in state-regulated health plans.

“Behavioral health treatment, including ABA, was specifically written into the law by Congress as an essential health benefit, yet that requirement seems to have disappeared from the new HHS regulations," said Bell. "On the other hand, we are encouraged that the flexible approach HHS has adopted could ultimately lead to more states including behavior treatment benefits for autism.

"The habilitative services category may offer a fallback. States that do not have an ABA benefit should step up – now – and determine that this vital coverage is part of their benchmark plan.” 

For instance, Ohio, which is not one of the 32 states to enact an autism insurance reform law, will be permitted to require the coverage in its ACA health insurance marketplace under an order signed in December by Gov. John Kasich. California, New York, Michigan, Delaware and Alaska, all of which passed their state laws after the ACA was enacted, also will be permitted to include behavioral health treatment in their ACA health plans.

WXIA and Ava's Law

The latest entry in WXIA's series on autism and the Georgia mandate bill, Ava's Law:

A Friday release from Autism Speaks:

Autism Speaks today endorsed SB.191, the Senate version of 'Ava's Law," which would require state-regulated health plans to cover autism-related therapies. The bill was introduced by Sen. John Albers (R-Roswell).

“"We commend Senator Albers for his leadership on this issue of critical concern tothousands of Georgia families,"” said Lorri Unumb, Esq., Autism Speaks vice president for state government affairs. “"Autism Speaks joins Georgia's autism community in calling on the legislature to pass SB.191 and join the growing majority of states, including Florida and South Carolina, that have taken steps to end healthcare discrimination against children with autism."”

Ava's Law would require up to $50,000 a year in coverage for behavior health treatment which is routinely denied by health insurers, even though evidence-based treatments have been endorsed by the American Academy of Pediatrics and the U.S. Surgeon General. Also it would require coverage for autism-related speech, occupational and physical therapy as well as pharmacy, psychological and psychiatric care. (A Fact Sheet on Ava's Law is here.)

A House version of the bill, (HB.309), has been introduced by Rep. Ben Harbin (R-Evans). In an interview with NBC 11, Home Depot Co-founder Bernie Marcus said Georgia Gov. Nathan Deal told him he would sign the bill if voted out of the Legislature.

The bill is named after Ava Bullard, whose mother Anna Bullard of Lyons, posted aYouTube video describing her family's experience raising a child with autism. Bullard and other Georgia advocates have helped rally support for the introduction of this year's bill. Georgia is one of just 18 states yet to enact autism insurance reform.

The bill would take effect 60 days after passage.

WXIA Report on Autism Center

In the latest entry in its series on autism, WXIA reports on an early intervention program:

Across town at the headquarters for Autism Speaks, a small group of dedicated mothers brainstorm. They've heard the names of the lawmakers reportedly trying to kill the bill. Judith Ursitti handles state government affairs for Autism Speaks. She tries to assure everyone that this sort of battle is expected.

"Passing a piece of health care legislation is always hard. But it was hard in Texas. It was hard in South Carolina. It was hard in Arkansas. It was hard in Louisiana. It was hard in West Virginia."

For families without money, the only option left is the school system. And while schools can help a child, they can't replace the intensive therapies that lead to dramatic change, like in 8 year old Ava Bullard's case. She went from non verbal to high functioning after years of one-on-one specific treatment.

Developmental pediatrician Doctor Alan Weintraub says, "What the lay public doesn't understand is that those therapies are educationally based, they're not medically based, so the intensity--  they're not the same level."

TV Reports on Utah and Tennessee Mandate Bills

In Salt Lake City, KUTV covers the Utah mandate bill.

In Knoxville, WBIR covers the Tennessee mandate bill:

WXIA Reports on Autism

A previous post included the first of Atlanta station WXIA's series of reports on autism.  Below are more:

• An interview with Anna Bullard, mother of Ava Bullard, who has lent her name to "Ava's Law."
• A report on legislative lobbying.
• An interview with Ava's Law sponsor Ben Harbin. 
• A piece on support for the bill from Home Depot founder Bernie Marcus, who also founded an autism treatment center:

Followup Story to "Optimal Outcomes" Study

The San Jose Mercury News writes of the "optimal outcomes" study that this blog has described:

There are no solid numbers showing what percentage of children diagnosed with autism eventually lose that diagnosis. But the idea that autistic children could recover began to gain traction in 1987 when UCLA psychology professor Ivar Lovaas said he saw a 47 percent recovery rate using intensive behavioral therapy. Many researchers, however, questioned whether some of the children in that and other studies truly had autism in the first place.

The new study, published in the Journal of Child Psychology and Psychiatry, has put these questions to rest, autism experts say.

For the study, a team of psychiatrists led by Deborah Fein of the University of Connecticut recruited 34 people who had been diagnosed before age 5 and had since lost their diagnosis according to the team's extensive interviews and behavioral observations. The team also solicited independent verification of the children's initial diagnoses.

Fein is quick to caution that the overwhelming majority of children with autism will not recover. "I've seen hundreds and hundreds of kids who got great therapy and excellent parenting," she said. "They all made progress, but very few of them reached that stage."

In general, she added, "it's very hard to predict who is going to respond rapidly to intervention."
Another unknown is how recovery comes about. Most families try several therapies, often several at once, making it difficult to tease out which are most important for producing optimal outcomes.

This report is more accurate than most.  But some psychologists would dispute the suggestion that the new study has ended all questions about Lovaas's findings:  some argue that the 47% figure was too high.

Georgia TV Report and Survey on Autism & Ava's Law

In Atlanta, WXIA reports on Ava's Law, insurance  mandate legislation in Georgia:

"We're living in the dark ages here." Doctor Alan Weintraub is one of just seven developmental pediatricians in Georgia. Parents wait months to see him, to get the diagnosis of autism.

"You can take this child like looking like he has severe autism to fitting into the world. it would make a huge incredible difference. If the families can afford the therapies early on, it's the biggest turning point."

The autism diagnosis highlights a class divide. Families with money can give their children all the therapies. The rest, can't.

"You're talking about someone's salary to pay for that weekly intervention. If we can get that covered in a more appropriate fashion, you're taking away that class warfare. You're taking away that inequity."

 

The station commissioned a state poll:

Should Georgia law require health insurance plans in the state to cover treatments for autism? Or not?

Should Require - 76%
Should Not - 15%
Not Sure - 8%

Data from other states show the cost to cover autism treatments is about 32 cents per person per month. Does knowing this make you more likely to say Georgia should require insurance plans to cover treatments for autism? Does it make you less likely to say Georgia should require plans to cover treatments? Or does it not make a difference?

More Likely - 57%
Less Likely - 9%
Does Not Make a Difference - 32%
Not Sure - 1%

Is there someone with autism in your immediate family? Is there no one in your immediate family, but someone with autism among your extended family or friends? Or do you not know anyone with autism?

Immediate Family - 8%
Extended Family / Friends - 41%
No One - 49%
Not Sure - 2%

Column on Tennessee Mandate Legislation

At The Tennesseean, Gail Kerr writes about insurance mandate legislation in the state:

State Sen. Jim Kyle, D-Memphis, and state Sen. Jim Tracy, R-Shelbyville, filed almost identical bills. They have now signed on to each other’s and plan to push the legislation forward together. Kyle’s bill is sponsored in the House by state Rep. Gloria Johnson, D-Knoxville.
...


Kyle acknowledged these types of bills “are difficult to pass.” Insurance lobbyists will almost certainly fight it, and lawmakers will be concerned about whether it will cost the state money to cover children served by TennCare.

But Kyle pointed out there is precedent for this type of law. His late aunt, state Sen. Anna Belle Clement O’Brien, worked to pass legislation requiring insurance companies to cover mammograms. It took her years, but she finally got it done. This is worth fighting for, Kyle said. To do that, he said, people impacted by autism need to make their voices heard.

“I just think folks who know folks need to step up and speak up to let the legislators know that this is something Tennessee children deserve no less than children in other states,” he said.

As for the potential cost to the state, Kyle said the coverage would begin on Jan. 1, 2014, meaning those costs might be picked up by the Affordable Care Act.

Jobs Argument for Georgia Mandate

In Cartersville, The Daily Tribune News reports on arguments for a mandate bill for Georgia:

Megan Andrade, an autism activist who has worked to get Ava’s Law into the Legislature, said now was the time to pass the bill.

“Thirty-two other states have passed insurance reform and we have a lot of kids here in Georgia that are not getting insurance coverage for treatment that they need, and a lot of my friends have children and we’re all always talking about what grant we can apply for or how we can get money, and there just isn’t any,” she said.
...

 If the bill passes, Andrade believed the state would see a number of benefits. She thought it would lower Georgia’s long-term expenses, as autistic adults who go through therapy would require less state assistance and be more independent.

She also believed the bill could help create jobs.

“It’ll bring jobs to Georgia, for one thing, because the fact that insurance companies do not cover most of these treatments means that clinics and providers don’t come to Georgia because they know people can’t afford it,” she said.

Andrade said the estimated cost to a Georgia resident’s monthly insurance premiums would be approximately 32 cents. She said the number was based on cost analysis done in other states that have passed similar laws.

For more information on how to get involved with the push for autism insurance legislation, visit www.georgiaautismbill.com.

TV Coverage of Tennessee Mandate Bill

Nashville's WKRN covers the mandate bill in Tennessee:

WKRN, Nashville News, Nashville Weather and Sports

Autism Bills in Maine and Hawaii

In Maine, the Kennebec Journal reports on new legislation, using the anecdote of a Addie Bowen, a young Mainer with ASD:

Now a bill in the Maine Legislature would help more families access the specialized speech, language, occupational and physical therapies that Addie receives, known as Applied Behavior Analysis, as well as other professional developmental services.

Maine joined a national trend in 2010 when it passed legislation requiring private health insurance companies to provide coverage for autism spectrum disorders in children through age 5. The bill before the Insurance and Financial Services Committee would push the coverage requirement to age 21.

Proponents say the bill is intended to ensure a continuum of care for children who have autism but aren't covered by MaineCare, the state's form of Medicaid, and who may live in school districts where autism programs are limited.

"When you look at the range and variety of individual circumstances of people who have autism in Maine, we have children and young adults who can only get so much through our public schools," said Sen. Emily Cain, D-Orono, one of the bill's sponsors.

The insurance committee has yet to schedule a hearing on the bill.

Maui Now reports on a mandate bill in Hawaii:

A bill that would require coverage and benefits for patients with autism spectrum disorders passed committee approval in the state House today.

The House Committee on Consumer Protection and Commerce unanimously adopted HB721, which requires that state-regulated health plans cover the diagnosis and treatment of autism, including Applied Behavioral Analysis.

The bill was originally heard last week in a hearing that featured testimony from an 8-year-old boy named Luke, who was diagnosed with autism. During his testimony, Luke’s difficulties in communicating with others was observed firsthand by legislators as he asked for the help that he needs to better navigate the social world.

“The testimony of the brave young boy clearly illustrated the importance of early diagnosis and treatment for Autism Spectrum Disorder,” said CPC Chair Angus McKelvey of Maui.

The bill, now being referred to as “Luke’s Law” is designed to equip children with the social skill set needed to better interact with others and enrich their lives.

Advice to Police

People with ASD sometimes have unfortunate encounters with law enforcement. At Officer.com, Pamela Kulbarsh gives police officers some advice that may raise concerns among autism self-advocates:

If you take an individual into custody and suspect (even remotely) the person may have autism, alert jail authorities; it is essential that the person be segregated.  Additionally, contact the DA about the case for further advice or directions.  These individuals do best in isolation.  Seclusion from other inmates will also reduce the risk of abuse and injury by the general jail or prison population toward the autistic person. The individual should be placed on the detention facility’s mental health roster for psychiatric evaluation.

Tennessee Mandate Bill

The state legislative season is under way, and lawmakers are introducing insurance mandate bills. From Autism Speaks:

Autism Speaks endorsed legislation introduced in the Tennessee Senate and House that would require state-regulated health plans to cover the diagnosis and treatment of autism. Tennessee is one of just 18 states yet to enact autism insurance reform.

The Senate bill, SB.1286, is sponsored by Sen. Jim Tracy (R-Shelbyville) [left]); the House bill, HB.1265, is sponsored by Rep. Kevin Brooks (R-Cleveland). The bills would require coverage for autism-related speech, occupational and physical therapy, as well as behavioral health treatment, including Applied Behavior Analysis (ABA).

“"We commend Senator Tracy and Representative Brooks for their leadership on this issue of critical concern to thousands of Tennessee families,"” said Lorri Unumb, Esq., Autism Speaks vice president of state government affairs. “"Autism Speaks joins the Tennessee autism community in calling on the legislature to pass SB.1286 and HB.1265 to stop healthcare discrimination against children with autism."”

Based on experience in states that have enacted insurance reform laws, Autism Speaks has found the impact of autism coverage on premiums averages 31 cents per member per month. After two years in operation, Missouri's law requiring coverage of autism benefits was found by the state overall health care costs by 0.16 percent.

Of the 32 states that have enacted autism insurance reform, four--Kentucky, Arkansas, Missouri and Virginia--neighbor Tennessee. Legislation has been introduced in Georgia and similar reform efforts are underway in North Carolina.

Autism Speaks and State Bills

Autism Speaks has recently endorsed several bills in state legislatures.

In Kansas:

Autism Speaks today endorsed SB.175 and HB.2317, the new autism insurance reform bills, which would extend the 2010 pilot program for state employees to cover all Kansas residents with state-regulated health plans. Since the pilot program started, the prevalence of autism nationally has been revised upwards to 1 in every 88 children.

In Georgia:

Georgia's new autism insurance reform bill -- Ava's Law-- has just been introduced and endorsed by Autism Speaks. Sponsored by Rep. Ben Harbin (R-Evans), the bill (HB.309), would require state-regulated health plans to coverautism-related therapies.

In Minnesota:

Autism Speaks today endorsed HF.181, sponsored by Rep. Kim Norton (DFL-Rochester), which would require state-regulated health plans to cover the diagnosis and treatment of autism. Governor Mark Dayton pledged to engage on autism insurance reform earlier this year following the release of a series of recommendations by the state's Autism Spectrum Disorder Task Force. 

(See yesterday's post on Minnesota.)

ABLE Act Reintroduced

A release yesterday from Rep. Ander Crenshaw (R-Florida):

Congressman Ander Crenshaw (R-FL) and Senator Robert Casey (D-PA) today (2/13) re-introduced the Achieving a Better Life Experience Act (ABLE Act) – bipartisan legislation to create an improved quality of life for individuals with disabilities through tax-free savings accounts.

The ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill, first introduced in 2006, aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. The bill would supplement, but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. Upon introduction, the legislation has earned 59 original House co-sponsors and 16 original Senate co-sponsors and is backed by more at least 50 local, state, and national disability advocacy groups , including the National Down Syndrome Society, The Arc, and Autism Speaks.

The release includes statements from Crenshaw, and Senate sponsor Robert Casey (D-PA), as well as cosponsors Senator Richard Burr (R-NC), Rep. Cathy McMorris Rodgers (R-WA) and Chris Van Hollen (D-MD).

The House bill is HR 647.  The Senate bill is S 313.

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.

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.”