Sunday, November 23, 2014

TRICARE Autism Care Demonstration

At The Star-Tribune in Tacoma, Tom Philpott reports on TRICARE:
[A] Comprehensive Autism Care Demonstration that began a slow rollout in late October will still leave retirees and reserve component families facing heavy out-of-pocket costs to provide children with intensive ABA therapy that has become a standard of care, say advocates for families.

Defense Health Agency officials say the demonstration, which is to run through December 2018 and open to any military family’s child diagnosed with autism, will be a platform for evaluating ABA therapy, a series of behavior interventions, to learn which ones benefit autism patients the most.
Army Maj. Gen. Richard W. Thomas, chief medical officer and director of health care operations for DHA, calls ABA therapy is an “emerging science.” Just as military has done for trauma care and other facets of health care delivery, Thomas sees the autism demonstration resulting in “new, innovative solutions to these patients” and discovery of best practices that are safe and effective.
...


When DHA released more details on the autism care demonstration in September, it sparked outrage among parents for another reason: a proposed cut in payment rate for board-certified behavior analysts performing one-on-one ABA therapy. DHA wanted to cut the rate from $125 an hour to $68 for providing day-to-day therapy. The higher rate would only be paid when assessing a patient’s need or drawing up a treatment plan. Otherwise rates would fall 46 percent.
...
The proposed rate change appears to have been based in part on a recent survey of Medicaid rates for ABA therapy in 14 states, which found board-certified behavior analysts receiving payments that ranged from $35 up to $125 a hour.
But DHA didn’t anticipate the reaction from families. Many said they feared board certified behavior analysts would drop Tricare patients and scuttle their child’s therapy. [Autism Speaks director of military relations Karen] Driscoll predicted it indeed would affect“thousands of kids.”
DHA has shelved the rate change until next April, giving it time to consider a more thorough review of ABA therapy payment rates being conducted by the think tank RAND.

Saturday, November 22, 2014

The Pope's Address on Autism


I am happy to welcome you at the end of your XXIX International Conference organized by the Pontifical Council for Pastoral Health Care, which I thank for wanting to realize such a commendable and relevant initiative, dedicated to the complex issue of autism spectrum disorders.
I warmly greet all of you who have come to take part in this meeting, which focused on prayer and testimony, together with people who are affected by autism spectrum disorders, their families and specialized associations.
These conditions constitute a fragility that affects numerous children and, consequently, their families. They represent an area that appeal to the direct responsibility of governments and institutions, without of course forgetting the responsibility of Christian communities.
Everyone should be committed to promoting acceptance, encounter and solidarity through concrete support and by encouraging renewed hope. In this way we can contribute to breaking down the isolation and, in many cases, the stigma burdening people with autism spectrum disorders, and just as often their families.
This must not be an anonymous or impersonal accompaniment, but one of listening to the profound needs that arise from the depths of a pathology which, all too often, struggles to be properly diagnosed and accepted without shame or withdrawing into solitude, especially for families. It is a Cross.
Assistance to people affected by autism spectrum disorders would benefit greatly from the creation of a network of support and services on the ground that are comprehensive and accessible. These should involve, in addition to parents, grandparents, friends, therapists, educators and pastoral workers. These figures can help families overcome the feelings, that can sometimes arise, of inadequacy, uselessness and frustration.
For this very reason, I thank the families, parish groups and various associations present here today and from whom we heard these moving and meaningful testimonies, for the work they carry out every day. I extend to all of them my personal gratitude and that of the whole Church.
Moreover, I want to encourage the hard work of academics and researchers, so that they may discover therapies and support tools, to help and heal and, above all, prevent the onset of these conditions as soon as possible. All of this while paying due attention to the rights of the patients, their needs and their potential, always safeguarding the dignity of every person.

Friday, November 21, 2014

House Will Vote on ABLE Act

Kevin Derby reports at Sunshine State News:
U.S. Rep. Ander Crenshaw, R-Fla., the chairman of the House Financial Services and General Government Appropriations Subcommittee, will have a busy Thanksgiving season since his “Achieving a Better Life Experience Act” (ABLE Act) will hit the House floor in early December. Crenshaw’s bill would create tax-free savings accounts for disabled Americans .
The ABLE Act is headed for a vote in December – testament to the widespread support for millions who face the daily struggle of living with disabilities,” Crenshaw said on Wednesday. “They deserve the same financial planning tools available to other Americans. My bill gives them just that by empowering families to live healthy and independent lives through tax-free savings accounts.
At Heritage, Robert Rector and Romina Boccia say that the bill would expand the welfare state.  The abstract:
The Achieving a Better Life Experience (ABLE) Act would establish tax-favored savings accounts for individuals with disabilities. The problem is that the ABLE Act takes a decisive step in expanding the welfare state. It eliminates asset tests for all means-tested welfare programs for families with a child who is eligible for Supplemental Security Income (SSI); it also eliminates the asset test for all welfare when disabled children become adults. Even absent the ABLE Act’s impact on means-tested spending, rather than singling out another group of beneficiaries for the tax-neutral treatment of savings, Congress should end multiple taxation of savings for all Americans. Congress should not eliminate the asset test for all families with children on SSI. Congress should reform the treatment of savings for all Americans and preserve means-tested program benefits for those Americans who need them the most.
This argument fails to note that the ABLE Act would help disabled people get the education and training they need to secure gainful employment -- and thus stay off the welfare rolls in the first place. 

Thursday, November 20, 2014

So Jerry Isn't Autistic After All

Previous posts discussed Jerry Seinfeld's speculation that he might be on the spectrum. Apparently his PR people have had a word with him. USA Today reports:
After telling Brian Williams earlier this month that he thought he was on the autism "spectrum," Jerry Seinfeld is now backtracking a bit.
"I don't have autism. I'm not on the spectrum," Jerry Seinfeld tells Billy Bush in an Access Hollywoodinterview. "I just was watching a play about it and thought, 'Why am I relating?' I related to it on some level. That's all I was saying."

Tuesday, November 18, 2014

The Pope and Autism

AP reports:
Pope Francis will meet with autistic children and their families in a bid to help raise awareness and end the stigma and isolation of people living with autism spectrum disorders.

The Saturday audience will cap an international conference on autism being hosted this week by the Vatican's health care office. Organizers said Tuesday it was the biggest medical conference of its kind on autism, gathering more than 650 experts from 57 countries.

The Rev. P. Augusto Chendi of the Pontifical Council for Health Care Workers told reporters the aim of the conference and the papal audience is to "help break the isolation, and in many cases the stigma, that surrounds people affected by autistic spectrum disorders."

While autism is increasingly diagnosed in places like the United States, where about 1 in 68 children are said to be on the spectrum, it is still largely unknown and undiagnosed elsewhere, including in the Vatican's own backyard of Italy, said Dr. Stefano Vicari, head of pediatric neuropsychiatry at the Vatican-owned Bambin Gesu hospital in Rome.

Francis, who has shown great ease around children with special needs, will deliver a speech to the hundreds gathered in the Vatican audience hall. The session will be punctuated by music and movement for the children.

Monday, November 17, 2014

Another Take on Seinfeld

At Haaretz, Rogel Alpher writes of Jerry Seinfeld's self-diagnosis:
The new face of autism is a man who made his fame and fortune from a special brand of humor, exposing the most complex nuances of social human behavior. His jokes, which are spot on, sometime focus on the smallest details of verbal expression.
...
Autism has been in vogue lately. There are documentary films, leading characters in television series. The autistic person is special. An original type. As Seinfeld explained, in his case it doesn’t involve a problem with functioning, but rather “thinking in a different way.” In truth, if that’s what it is, who wouldn’t want to be a little autistic?
But Seinfeld’s nonchalant self-diagnosis is a joke of sorts at the expense of my son, Yotam. While Seinfeld preened with a little autism on television, I sat with Yotam in our living room, together with a social worker. Yotam is 19, but incapable of being responsible for himself. The social worker had come to talk to him as part of the process of having his mother and me appointed his legal guardians.
...
Yotami will be showing an exhibition of his paintings in a month. On good days, he is happy with his life and accomplishes things. When he watches “Seinfeld,” it doesn’t make him laugh. Not even a little.

I wouldn’t change him for any other kid on earth. But for his sake, I would change his future if I could.

Sunday, November 16, 2014

Insurance in Washington State

Autism Speaks reported yesterday:
Autism Speaks welcomed Washington as the 38th state to enact autism insurance reform during the 6th annual Autism Law Summit held here today. Washington became the first state to require private insurers to cover medically necessary treatment of autism through litigation; the previous 37 states enacted specific insurance reform laws.
The Washington Autism Alliance & Advocacy (WAAA) teamed up with Seattle attorney Eleanor Hamburger in pursuing a series of successful state and federal class action lawsuits against Washington's major insurance carriers as well as the state employees health benefit plan.
WAAA Founder Arzu Forough [left] and staff attorney Mira Posner celebrate in Nashville
The most recent case, OST v Regence, led to a unanimous state Supreme Court ruling directing Regence Blue Shield, the state's largest private insurer to stop enforcing blanket exclusions for medically necessary mental health coverage, such as applied behavior analysis (ABA) for autism. Hamburger within days then announced she had reached a settlement with Regence of state and federal class action suits.
The proposed settlement would require coverage for medically necessary speech, occupational and physical therapies and ABA therapy to treat mental health conditions, including autism. Exclusions, age limits, monetary caps and visit limits would all be prohibited. A $6 million settlement fund would be established by Regence to reimburse policyholders whose previous claims for autism coverage were denied.
The Supreme Court decision then prompted state Insurance Commissioner Mike Kreidler to direct all state-regulated private health plans to provide coverage in 2015 and to reconsider all claims denied since 2006 on the basis of a blanket exclusion. The order also covers new health plans sold through Washington Healthplanfinder, the state's Marketplace created under the Affordable Care Act.
The state and federal class actions were all brought on the basis that the blanket exclusions violate state and federal mental health parity law.