Michigan Mandate Becomes Law: It's Personal

MLive reports:

Lt. Gov. Brian Calley said he became an advocate for expanding care for autism patients after some families struggling to find help for their children came to his office.

But nearly three years later, it became personal.

“I was at a Heath Policy Committee hearing, and I heard testimony about what it was like from a boy who had received treatment as he described himself before he had access to treatment,” Calley said.

“And my wife and I, we knew we were having such difficulty with our daughter, and we had a hard time getting anybody to help and figure out what the problem was. It became clear at that point that what they were describing was how she was.”

Surrounded by his family and others with children diagnosed with the disorder, Calley on Wednesday signed into law a bipartisan package of bills making Michigan the 30th state to mandate insurance companies provide coverage for autism treatment and diagnosis.

Calley was pressed into service to sign the bills because Snyder is in Afghanistan visiting troops.

AP reports:

Lawmakers gave final approval to the measures last month, and both Republicans and Democrats who worked on the legislation said it was the plight of families trying to pay for their children's treatment that made the legislation so critical.

"When things are personal, you work a lot harder," said Democratic Sen. Rebekah Warren of Ann Arbor. [emphasis added]

Last month, Calley testified on the legislation:

State Officials Learn about the Spectrum

In North Dakota, The Jamestown Sun reports:

When Colin Vieweg goes to the mall, he feels like he’s in a jungle surrounded by howler monkeys all screaming at the same time.

“I just need to go away and stay away from the noise,” the Fargo 12-year-old said. “My mom says that’s because my brain processes noises differently than other people.”

Colin was one of several people who told state lawmakers Tuesday about what life is like living with Asperger syndrome, a developmental disorder on the autism spectrum.

The Human Services Committee is studying autism spectrum disorder and learning about the diagnosis, early treatment and care for individuals with the disorder. The committee is seeking recommendations on how to improve services and what changes the 2013 Legislature should consider.

Lawmakers asked to hear from North Dakotans with autism spectrum disorder to get a better idea of the challenges they face.

In New Jersey, the Star-Ledger reports:

Gov. Chris Christie today toured an autism treatment center that is using public education funds and private donations to teach life skills to 28 students and their families. Christie visited Somerset Hills Learning Institute during the campaign and returned to tout the Bedminster center's research-based approach.

"Of all the visits I made as candidate for governor in 2009 no place affected me personally more than this place," he said in a news conference in the center's lobby, adding: "It's places like this that are helping students and their families every day acquire the necessary skills to live and work as productive citizens of their communities."

Michigan Mandate and Jobs for Behavior Analysts

An earlier post noted that the West Virginia mandate might enable the state to keep behavior analysts who received training in its institutions.  The same is true of Michigan.  Crain's Detroit Business reports:

With 15,400 school-age children and an additional 4,500 ages 2-5 diagnosed with autism, Michigan needs up to 600 more licensed psychologists who also are board-certified behavior analysts and as many as 7,000 licensed therapists to provide autism treatment, said Colleen Allen, executive director of the Autism Alliance of Michigan in Detroit.

...

"There will be some frustration in the beginning from parents because there are not enough qualified therapists in Michigan," said Dave Meador, one of the leading supporters of autism insurance reform and a member of the Autism Alliance.

"Our intention is to help organizations run job fairs to attract (licensed psychologists) back to Michigan," said Meador, who is also CFO of DTE Energy Co. in Detroit. "We have good behavioral colleges, but many graduates leave the state because there is no insurance for autism. This (law) will be a job creation mechanism." [emphasis added]

In Michigan, there are only 118 board-certified behavior analysts, and fewer who specialize in autism, compared with 2,000 in Florida. The Sunshine State is one of 30 that, like Michigan, now mandates autism insurance coverage, said James Todd, a psychology professor at Eastern Michigan University in Ypsilanti

MLive reports:

When passing the bill, State Rep. Lisa Brown, D-West Bloomfield, urged members to note the loss of talent Michigan was facing without the bills.

“I think most people know at least one person who has a family member with a child diagnosed with autism,” she saidwhen the legislation was approved on March 29. “We’ve heard from the schools. They graduate these wonderful, educated, ready-to-go-to-work kids and they have to move out of state because the jobs aren’t here because it’s not covered by insurance.”

Department of Psychology Professor and Chair Wayne Fuqua said he looks forward to seeing less than 90 percent of his behavior analysis graduate students leave the state.

He says he hopes the new legislation translates into WMU ramping up training capabilities, especially once the Great Lakes Center for Autism Treatment and Research center is completed in July. Residential Opportunities, Inc., and Western Michigan University began a $1.7-million renovation project on Portage Road for a new center for autism treatment to serve the 500 children with autism and their families in Kalamazoo County in January.

Insurance Items

RAND has a report on implementation of the Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008. Contracted by the HHS Assistant Secretary for Planning and Evaluation, RAND interviewed several representatives of managed behavioral health organizations (MBHOs) 

A few examples were given of services that are not covered because they are not considered medically necessary: (1) “wilderness” programs for youth -- because of no evidence of effectiveness and the lack of clinically credentialed staff; and (2) Applied Behavioral Analysis (ABA) for autism, because it is considered educational rather than medical. [emphasis added] In addition, industry leaders mentioned limited coverage for psychological testing, because while it is clinically appropriate to rule out certain diagnoses, it is also a service that is subject to abuse. Some industry representatives suggested that these services may serve useful social functions but are not evidence-based behavioral health treatments....These organizations reported using standard credentialing checks to decide which providers to include in their networks. Some leaders mentioned excluding certain subspecialties (for example, specialty providers of ABA for autism) ,[emphasis added] and reported doing ongoing evaluations of network providers. One industry leader noted that a problem for all organizations is a shortage of psychiatrists in many geographic regions (especially in rural and frontier areas), and that they work hard to credential and include as many psychiatrists as apply. Another noted that exclusion of individual providers was done only on the basis of “egregious” quality issues.

A release from the California Department of Insurance:

Insurance Commissioner Dave Jones today announced that he has reached another favorable agreement with an insurer, UnitedHealthcare Insurance Company, to require immediate coverage of behavioral therapy for autism as a medical benefit. This new agreement is the latest step in an industry wide compliance initiative by Commissioner Jones. It follows three settlements reached earlier this year with Blue Shield, Health Net and Cigna to provide behavioral health treatments, including Applied Behavior Analysis (ABA), a well-recognized and effective treatment for autism. In addition, Commissioner Jones reconfirmed that yet another major health insurer, Anthem Blue Cross of California, has been providing the coverage pursuant to Department of Insurance (CDI) direction since November 2009.

Autism Advocacy

As part of its "Autism Inside and Out" series, North Metro TV offers a video guide to legislative advocacy, featuring Sherri Radoux of Minnesota:


 

Mandate Bill Passes Alaska Legislature

The Alaska insurance mandate bill came back from the dead and passed the Legislature over the weekend.  AP reports:

The Alaska Legislature has passed a bill that would extend insurance coverage to some children for treatment of autism spectrum disorders.

SB74 passed the House 36-3 on Sunday. The Senate later agreed to the House changes.
The measure would require insurance coverage for medically necessary treatments for autism, like speech and physical therapies.

Some insurance companies opposed SB74, calling it unfair to put the burden on private companies alone. An amendment that would have had the state comply with the coverage requirements was withdrawn on the House floor.

Torture

There have been many stories of abuse and restraint of people with ASD.  WFXT in Boston reports on a case of electric torture at the Judge Rotenberg Center:

Graphic video of teen being restrained, shocked played in court: MyFoxBOSTON.com

Employing Autistic Adults

CNN reports on Roses for Autism, a Connecticut organization that provides ASD adults with job experience:



In Dallas, KTVT-TV reports on employment of autistic adults:

TV News Reports on Autism

KPNX-TV in Phoenix reports on varieties of autism:



AP reports on the CDC study:



New Jersey public television interviews Walter Zahorodny, of UMDNJ, who says that the increase in prevalence probably is not just an artifact of greater awareness and changing diagnostic criteria.  He also expresses concern about DSM-5.

Watch Autism Investigator Sees Disorder Rates as Health Crisis on PBS. See more from WNJT.

Alaska Mandate Back from the Dead

At the Associated Press, Austin Baird writes that Johnny Ellis's SB74 may still pass after all:

Rep. Wes Keller still sees flaws in a bill that extends insurance coverage to some children for treatment of autism, but the chairman of the House Health and Social Services Committee said Friday that he plans to let the widely supported proposal move out of his committee.
...
Some insurance companies voiced opposition of the measure, and Keller sympathized with their claim that it is unfair to put the burden on private companies without extending the onus to the rest of the market. Premera Blue Cross-Blue Shield of Alaska has claimed a 3 percent increase of their premiums will likely occur, and they have said the bill only affects 15 percent of the market with the rest uninsured or covered under public plans.

Keller said after a hearing on the bill Wednesday that he was unlikely to let it through, but now six cross-sponsors of the bill are members of his committee. They and the bill's 29 overall cross sponsors in the House have won out.

He said Friday he has realized his position on the matter leaves him in a "pretty severe minority."
...
If everything goes as planned on Saturday, the bill will move to the Labor and Commerce Committee as scheduled. That committee could, however, waive the bill to ensure a floor vote takes place before session ends Sunday at midnight.

Read more here: http://www.adn.com/2012/04/13/2421995/keller-will-let-autism-insurance.html#storylink=cpy

Genetics and Autism

At The Huffington Post, Dr. Robert Klitzman writes that genetic testing may lead to discrimination:

The discovery of genes associated with autism raises these concerns anew. The Genetic Information Non-discrimination Act (GINA) is designed to try to prevent genetic discrimination in health care, but does not apply to life insurance, disability insurance or long-term care insurance. Currently, life insurers are free to request genetic information, and discriminate as a result.

Schools may learn of, or request genetic test results, and teachers may then discriminate against students with autism-associated mutations -- even if the mutation is not predictive (i.e., if some, but not all individuals with the mutation end up having symptoms). Parents may spend less time with a child found to have an autism-associated mutation than with other offspring.

Genetic information has been introduced into court rooms. The fact that a defendant in a crime has a mutation associated with autism may sway a court in judging guilt, causation, liability, or sentences.

Last week, Thomas Insel wrote:

Last week’s autism news was about prevalence. The CDC reported a 78 percent increase in autism prevalence since 2002. This week’s autism news is about genetics—three papers in Nature describe new genes associated with autism.
...
Is autism genetic or environmental? These new studies suggest it can be both. Genetics will not identify the environmental factors, but it may reveal some of the many syndromes within the autism spectrum (as in other neurodevelopmental disorders), it can define risk (as in other medical disorders), and it should yield clues to the biology of autism (revealing potential targets for new treatments). These three new papers on spontaneous mutations are an important milestone in a long journey. In parallel we need to find environmental factors, recognizing that there will be many causes for the autisms and many roads to find them.

Finally, an unavoidable insight from these new papers is that autism even when genetic may be spontaneous and not inherited in the sense that one or both parents carry some reduced form of the syndrome. Perhaps this insight will finally reduce the “blame the parents” legacy perpetuated for too long in the absence of scientific evidence.

Insurance Legislation

In Alabama, The Birmingham News reports on legislative action Tuesday:

Senators voted 32-0 for a substitute bill that directs insurance companies to offer plans that include coverage for autism treatment. Businesses could choose to offer the coverage as part of their insurance options for employees, or parents could pick it up as a rider, said sponsor Sen. Cam Ward, R-Alabaster.

Advocates originally were pushing a bill that would have mandated the coverage.

"I think it's a fair compromise. Is that everything we want? No," said sponsor Sen. Cam Ward, R-Alabaster. However, he said, "This provides more coverage than the autism community has ever seen."

In Alaska, AP reports:

Rep. Wes Keller, chairman of the House Health and Social Services Committee, said Wednesday that a bill requiring health insurance companies to provide coverage of top-notch treatment for autism spectrum disorders is unlikely to move through his committee this session.

At a hearing Tuesday, the back rows of the room were filled with the usual legislative staffers, but a crowd of activists, parents of kids affected by autism and a handful of children were also in attendance as part of an impassioned plea for the passage of SB74.

"This job is a heartbreaker," Keller said in an interview with The Associated Press. "With all that passion and feeling, it's easy to do something that's not effective, but this is a bad policy."

...

Some insurance companies voiced opposition of the measure, and Keller sympathizes with their position.

In West Virginia, WVNS-TV reports:

West Virginia University has one of the top doctoral training programs in behavior analysis in the country, yet there are only 28 Board Certified Behavior Analysts (BCBA) in our state.

The bills signed into legislation earlier this month not only makes treatment more affordable, it also makes West Virginia a more attractive place for analysts to work.

"Our surrounding states have had legislation that covers insurance for autism for awhile," said WVU Assistant Professor Claire St. Peter, Ph.D. "So when we were graduating students, well they were being drawn to other states."

WVU developed a Masters program in hopes of giving students the skills needed to combat the lack of autism services in rural areas but without insurance coverage, most of those students left the state.

"So we were graduating students who were from West Virginia, who wanted to stay in West Virginia, who couldn't just find a job because there was no coverage and the families couldn't afford it," St. Peter said.

In North Carolina, WSOC-TV reports on a proposed mandate.

Alaska Mandate Bill: A Hearing and a Setback

The Anchorage Daily News reports on an Alaska House hearing on autism mandate legislation:

Two of the witnesses, parents of children with autism, openly wept as they asked the committee to help save families by reducing the financial struggles they faced, even if they couldn't help with their emotional burdens.

One was BreeAnn Davis, a mother testifying by phone who said that if the bill didn't pass this year, it would be like a death sentence.

The other was a legislator more accustomed to being on the other side of the table, Rep. Dan Saddler, an Eagle River Republican who spoke of being forced to split up his family so his son could get autism treatment in a state with better facilities.

Five of the seven members of the Health and Social Services Committee are sponsors of the measure, but when the hearing ended, Rep. Wes Keller, R-Wasilla, its chairman, said he would hold the bill and gave no indication of when -- or if -- he would bring it up again.

KTUU-TV offers more (VIDEO HERE):

A bill that would mandate autism insurance in Alaska suffered an unexpected setback Tuesday night, when House Health and Social Services Committee Chair Rep. Wes Keller (R-Wasilla) decided to keep the measure bottled up in committee -- leaving parents of autistic children deeply disappointed.

With just five days left in the regular session, it is now extremely unlikely that Senate Bill 74 -- which would require insurance companies writing policies in Alaska to provide coverage for autism -- will see the light of day this session.

The measure is not dead, but it's on life support.

Backers' mood Tuesday was one of "shock" and "deep disappointment" according to Beth Richardson, the mother of a 6-year-old who has benefited greatly from early detection and treatment of autism. Statistics show that 50 percent of all children diagnosed with the disease can attend a regular first-grade class rather than special education.