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.