Research and Everyday Life: A British Perspective

At The Conversation, Liz Pellicano of the University of London makes a point that Americans have also made:

In a project called A Future Made Together, funded by the charity Research Autism, we conducted the most comprehensive review of UK research into autism ever undertaken.
We consulted with more than 1,700 autistic people, their families, practitioners and researchers to understand what they thought of current autism research in the UK and where the funds towards autism research should be prioritised.

Our report acknowledged the many great strengths of autism research in the UK such as leading work in the area of cognitive psychology, stretching from the work of Sir Michael Rutter to Uta Frith. But it also noted considerable challenges in the years to come. While parents of children with autism were impressed by the amount of work that goes into autism research, they were not convinced that research had made a real difference to their lives.
One woman said:

I fill in all these questionnaires and do everything I can to help … but when it comes down to it, it’s not real life. It’s always missing the next step. It’s great you’ve done this research, you’ve listened to my views … but now do something with it.

It turns out that too many people feel that there is a huge gap between knowledge and practice. Research doesn’t seem to help their child catch the train by themselves or keep themselves safe. And it doesn’t say how to get autistic adults into jobs and keep them there.

The people we spoke to said that they don’t want to – or can’t – read about research in academic papers. They want to hear about research in accessible ways. And they want to see real changes for their child, or for the person they work with.

British academics haven’t been taking enough notice of real-life issues. Our analysis showed that the majority of UK research focuses heavily on “basic science” – neural and cognitive systems, genetics and other risk factors – rather than on research targeting the immediate circumstances in which autistic people find themselves, on services, treatments and interventions and education.

Is Jenny McCarthy "Pro-Vaccine"?

At The Ne w York Times, Frank Bruni takes down Jenny McCarthy:

[E]arlier this month, she said the craziest thing of all, in a column for The Chicago Sun-Times.

“I am not ‘anti-vaccine,’ ” she wrote, going on to add, “For years, I have repeatedly stated that I am, in fact, ‘pro-vaccine’ and for years I have been wrongly branded.”

You can call this revisionism. Or you can call it “a complete and utter lie,” as the writer Michael Specter said to me. Specter’s 2009 book, “Denialism,”looks at irrational retorts to proven science like McCarthy’s long and undeniable campaign against vaccines.
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In 2007, she was invited on “Oprah” and said that when she took Evan to the doctor for the combined measles-mumps-rubella vaccine, she had “a very bad feeling” about what she recklessly termed “the autism shot.” She added that after the vaccination, “Boom! Soul, gone from his eyes.”

In an online Q. and A. after the show, she wrote: “If I had another child, I would not vaccinate.”

She also appeared on CNN in 2007 and said that when concerned pregnant women asked her what to do, “I am surely not going to tell anyone to vaccinate.”

Two years later, in Time magazine, she said, “If you ask a parent of an autistic child if they want the measles or the autism, we will stand in line for the measles.” I’ve deleted the expletive she used before the second “measles.”

And on The Huffington Post a year after that, she responded to experts who insisted that vaccines didn’t cause autism and were crucial to public health with this declaration: “That’s a lie, and we’re sick of it.”

Adults with Autism in Massachusetts

In Massachusetts last week, the State House News Service reported:

The House unanimously passed a bill on Wednesday intended to improve educational opportunities and access to services for people with autism or other intellectual disabilities.

The legislation (H 4047) would also create a special commission to look at state policies dealing with individuals with autism, and allow families to set aside money tax free in savings accounts to pay and plan for the long-term care and housing of children with intellectual disabilities.
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After the House voted 151-0 in favor, there was a smattering of applause from some members in the chamber. The bill would also expand eligibility for developmental services to individuals with IQs higher than 70, a current rule that Bradley said excludes many people with autism who have other developmental challenges they must overcome.

At The Boston Globe, Lucy Berrington explains the need for the bill:

For most of our adults with autism (or almost any other developmental disability), state services are a fantasy. Current eligibility for such services is not just inadequate. It is among the very worst in the country, possibly the worst, according to a review last year by the Disability Law Center, an independent advocacy organization in Boston. Moreover, if those autistic adults have a serious mental illness that under existing law makes them eligible for state support, they have been almost without exception denied it — because they are autistic.
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Why is the need so acute? Currently, the Commonwealth is allowed by law to deliver services only to adults ages 22 and above who are intellectually disabled — but IQ is such a poor measure of functional life skills that the DLC struggled to find other states restricting eligibility to this standard. Most states include a broad range of developmental conditions. (It’s possible Massachusetts is more competitive by other measures, like quality of services.)

Consequently, when autistic people in Massachusetts age out of public education, often with marketable skills, they lose the structure and guidance that worked for them in school. This makes a successful transition to independent living and the workforce far less feasible. Likely outcomes include isolation, unemployment, homelessness, chronic health problems, and tremendous emotional and financial stress on families. Support organizations routinely hear from aging parents caring for autistic sons and daughters, terrified to die, because who will step in then?

NIH Seeks Comments on DSM-5

From the National Institutes of Health:

Subsequent to the publication of the DSM-5, the federal Interagency Autism Coordinating Committee (IACC) released a “Statement from the Interagency Autism Coordinating Committee Regarding Scientific, Practice and Policy Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder (DSM-5)”. The IACC is a federal advisory committee, composed of federal and public members, that coordinates ASD-related activities within the United States Federal Government. The committee identified several ways in which the change in diagnostic criteria might affect access to diagnostic, treatment, and other services. The statement identifies several research questions related to the implementation of the new ASD criteria, including reliability and validity of the criteria and severity ratings, an evaluation of whether some individuals will see a change in their diagnosis, whether there is a need for new or revised screening and diagnostic tools and processes, and potential implications for the ASD community support and access to services.

The National Institutes of Health (NIH) have invested significantly ($192 million in fiscal year 2012) in biomedical, treatment and services research related to ASD. In an effort to further align its research priorities with the needs of individuals with ASD and their families, the NIH is soliciting further input about the implications of changes in ASD diagnostic criteria for autism research, as well as input into the potential for research to inform concerns and questions related to clinical practice and policy.

- See more at: http://grants.nih.gov/grants/guide/notice-files/NOT-HD-14-012.html#sthash.D3QRi3Jf.dpuf  

Nebraska Mandate to Become Law

A press release from Nebraska Governor Dave Heineman:

 Gov. Dave Heineman is expected to sign LB 254 into law on Monday. As a result of this law, some health insurance plans in Nebraska will provide coverage for screening, diagnosis and treatment of autism spectrum disorder in a child until the insured child is 21 years old.

“I’m looking forward to signing this autism bill into law,” said Gov. Heineman. “I will be signing this bill on behalf of families who meet the challenges of autism every day.”

The Governor will hold a public bill signing news conference on Monday, April 21 with autism advocates. The autism bill was sponsored by State Sen. Colby Coash of Lincoln, and had the backing of many autism advocacy groups and families.

“I care about this issue because I have seen the impact that this treatment can have on the future of a child with autism,” said State Sen. Coash. “Positive things can happen when they receive life-changing treatment. These families are strong willed and they never gave up on the bill, so I wouldn’t either. Today is a special day.”

One of the autism advocates is Vicki Depenbusch of Lincoln, who is the mother of an autistic son, Jacob. Governor Heineman met Jacob at his parent teacher conference held in 2010. For the last 4 years, the two have communicated regularly and attended events together. Governor Heineman appreciates his friendship with Jacob, who calls himself the “Governor’s Buddy.”
“This is a great day for Autism families in Nebraska,” said Depenbusch. “It gives us hope that our children will be the best citizens that they can be.”

The insurance coverage includes behavioral health treatment, such as applied behavior analysis, for autism. This type of treatment will be limited to 25 hours per week and the insurer will be able to review the treatment once every six months. 

Certain insurance plans will be exempt from providing the autism requirement, according to LB 254. Those include health plans sold in the individual or small group federally facilitated marketplace under the federal Affordable Care Act. Also, Nebraska is preempted from mandating coverage on plans governed by the federal Employee Retirement Income Security Act of 1974 (ERISA). Most private employer sponsored plans are ERISA plans.  

ERISA Suit Against Boeing

Autism Speaks reports on a suit in US District Court in Seattle.

Aerospace giant Boeing has been hit with a complaint in federal court by its Washington state employees who claim the company's denial of insurance coverage of applied behavior analysis (ABA) for their children with autism violates the federal Mental Health Parity Act. Filed by two families whose sons have autism, "C.S." and "D.Z.", the suit seeks certification as a class action on behalf of Boeing's 81,000 Washington-based employees.

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The case has added significance because Boeing self-insures its employee health plan and therefore is regulated under federal ERISA law which is immune from state autism insurance reform laws, such as the law in its headquarters state of Illinois. The suit was filed by Seattle attorneys Ele Hamburger and Richard Spoonemore who have been winning a series of similar federal class action suits in Washington over ABA denials. The complaint alleges Boeing's denial of ABA benefits violates the 2008 Wellstone Domenici Mental Health Parity and Addiction Equity Act as well as its fiduciary responsibilities under ERISA.

Boeing does not expressly exclude ABA coverage in its health plan, but rather has its claims administrators exclude all coverage of ABA therapy through internal policies and restricted provider networks, the complaint alleges.

Mental Health Parity Regs in California

A release from California's Department of Insurance:

New mental health parity regulations have been approved by the Office of Administrative Law. These regulations drafted and proposed by the California Department of Insurance make sure insurance companies cover medically necessary treatment for children and individuals with autism.

"Approval of the mental health parity regulation will help end improper insurer delays and denials of medically necessary treatments for autistic individuals," said Insurance Commissioner Dave Jones. "This regulation provides clear guidance to the industry, stakeholders and consumers on the requirements of the Mental Health Parity Act from 1999."

Prior to these new regulations insurers were able to delay or deny medically necessary treatment for individuals with autism. The regulations further define the circumstances in which insurers must cover behavioral health treatments for autism. The regulations interpret and make specific the Mental Health Parity Act and gives more detailed guidance regarding the scope of the Act's provisions as they relate to autism treatment.

The Initial Statement of Reasons
Mental Health Parity Regulations

At California Healthline, David Gorn writes:

"We have all had frustration with the denials and delays," said Julie Kornack, senior public policy analyst at the Center for Autism and Related Disorders in Tarzana. "This really is making the state law and making the public policy clear."

With clear policy comes more certainty of coverage, she said. "Our hope is, [insurers] will see the laws are in place to ensure coverage."

According to advocates and officials at the Department of Insurance, delays often have come in the demand for more testing, particularly IQ testing.

"That practice creates significant delays," said Kristin Jacobson, president of Autism Deserves Equal Coverage, an advocacy group based in Burlingame. "It's an unnecessary test and it's irrelevant to needing treatment."