Implementing the Kentucky Mandate

A release from Autism Speaks:

Autism Speaks praised the Kentucky Department of Insurance for issuing an advisory opinion directing health insurers to start covering services provided by supervised ABA providers, finding that autism treatment would be "severely compromised" without their services.

Kentucky law explicitly exempts persons who provide Applied Behavior Analysis (ABA) under the supervision of a licensed professional from themselves having to gain certification, according to the opinion, signed by Insurance Commissioner Sharon Clark. Their services should therefore be reimbursed under Kentucky's 2010 autism insurance reform law, the department concluded.

“This opinion eliminates a significant and unnecessary hurdle that has blocked many Kentucky families from obtaining appropriate levels of ABA therapy for their children with autism,” said Lorri Unumb, Esq, vice president for state government affairs. “The Kentucky Department of Insurance correctly interpreted the text of the state’s 2010 autism insurance reform law and the will of the Legislature in directing health insurers to start covering these services.”

The opinion noted that ABA therapy requires a functional assessment and behavior plan developed by a Board Certified Behavior Analyst (BCBA) or Board Certified Assistant Behavior Analyst (BCaBA). The direct services ultimately provided under the treatment plan, however, are typically rendered by "supervisees" – the front-line personnel who carry out the intervention.

"Clearly, Kentucky's statutes pertaining to ABA and the treatment of autism spectrum disorders contemplate the active involvement of supervisees, provided that they are acting under the extended authority and direction of a BCBA or a BCaBA," the opinion states.

"To exclude coverage for supervisees undermines the intent of (state law) which is to mandate coverage for the diagnosis and treatment of autism spectrum disorders," the order said. "Without the direct services provided by supervisees, the treatment of autism is severely compromised."

Autistic Adults in San Antonio

Previous posts have dealt with ASD people "falling off the cliff" when they age out of the school system.  The San Antonio Current reports:

Rita Kosnik, professor of management at Trinity University and mother of a child with Asperger’s syndrome, said that for these students high school graduation is nothing to celebrate. “It’s a curse. They go into a no-man’s land. They get turned down for services day after day because they can walk and they can read.”

Kosnik estimated that as many as 88 percent of high-functioning autistic adults today are underemployed, living in basements and guest rooms and “doomed to be beneficiaries of our Social Security system.”

Small parent-led groups, such as the 500 Olmos Club that Kosnik leads with two other parents, have helped a handful locally, but conference speakers agreed that a huge need exists in San Antonio. “These people deserve to be happy and have some sense of success,” said Rosario Farahani-Espinoza, a retired teacher with two autistic children.

A program out of Phoenix provides some clues as to where a coalition here could potentially take things.

Introduced by SA City Manager Sheryl Sculley, Denise Resnik, co-founder of the Southwest Autism Research and Resource Center, talked up her group’s quick successes — thanks in part to corporate donors: a 1,800-square-foot campus, regular research and pharmaceutical trials, and — perhaps most impressive — an employment rate of 65 percent. (The average for autistic adults, is about 10 percent.) Students there have also contributed 30,000 hours of community service in the past three years.

“At times I feel like we are really with young adults exactly where we were 20 years ago with early intervention,” Resnik said.

Dan Burns, chair of the Autism Trust USA and contributing editor at the online news source Age of Autism, made the drive from Dallas for the breakfast. He’s been working on a possible partial solution: a summer camp in Austin that will gather for the first time this summer, develop into a full-time vocational residential community in the fall, and then, hopefully, develop into a college campus.

It’s known as An Independent Me, and it already has some permanent and part-time campers lined up for the summer. “We want to get this going anyplace it’s needed,” Burns said. “I’m the Johnny Appleseed going out and trying to get this going, wherever we can find the energy and the resources.”

The Politics of DSM-5

At The New York Times, Benedict Carey reports on the annual meeting of the American Psychiatric Association:

The proposed definition of autism, which would eliminate related labels like Asperger’s syndrome and “pervasive developmental disorder,” came under fire in January, when researchers at Yale University presented evidence that about half of the people who currently have a diagnosis on the higher functioning end of the “autism spectrum” would no longer qualify under the new definition.

At this week’s annual meeting, researchers presented data from an unpublished study of some 300 children, finding that the proposed definition would exclude very few who currently have a diagnosis of autism or a related disorder.

But meeting attendees got mixed messages on autism. In a talk on Tuesday, Dr. Susan E. Swedo, head of the panel proposing the new definition, said that many people who identify themselves as “aspies,” for Asperger’s syndrome, “don’t actually have Asperger’s disorder, much less an autism spectrum disorder.” Dr. Swedo is a researcher at the National Institute of Mental Health.

The issue is hardly settled. Findings from published studies are conflicting, but three recent analyses provide support for the Yale estimate, and more papers in the pipeline are also documenting a significant reduction in numbers of those who would qualify under the new criteria. Getting such a diagnosis is critical to obtain state-financed services for children with special needs.

“I certainly hope the D.S.M. task force is right, that the numbers won’t change much,” said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and senior author of the study presented in January. But if the new definition does not change who gets a diagnosis, he asked, “Why mess with it at all?”

At MedPage Today, John Gever is more explicit about Dr. Swedo's comments:

The head of the American Psychiatric Association committee rewriting the diagnostic criteria for autism spectrum disorders took on the panel's critics here, accusing them of bad science.
Susan Swedo, MD, of the National Institute of Mental Health, said a review released earlier this year by Yale University researchers was seriously flawed. That review triggered a wave of headlines indicating that large numbers of autism spectrum patients could lose their diagnoses and hence access to services.

Swedo spoke at the American Psychiatric Association's (APA) annual meeting, in her role as chairperson of the work group developing new diagnostic criteria for neurodevelopmental disorders in DSM-5, the forthcoming fifth edition of the APA's Diagnostic and Statistical Manual of Mental Disorders.

She was especially incensed by reports in consumer media about the Yale group's study, led by aNew York Times article with a "blaring" headline that read, "New Definition of Autism May Exclude Many, Study Suggests." The Yale study, according to the Times article, found that most patients with Asperger's syndrome and about 25% of those with overt autism would not qualify for those diagnoses under DSM-5.

Bloggers in the autism spectrum community then got the numbers wrong and claimed that DSM-5 would deprive 65% of all autism patients of their diagnoses, "striking fear in the hearts of families," Swedo said.

In fact, she said, the Yale study and hence the Times and other reports messed up. "I can assure you that it is not true," she told APA meeting attendees.

AutismAid

From a new group, AutismAid:

Lawrence Goldfarb, founder of LRG Capital Group and Bay Area autism activist, and Tim Welsh, national activist and voice for autism awareness, have created AutismAid, a 501(c)3 with the goal and objective of being an umbrella for autism organizations and supporters across the globe to unify and gather under for support. Their desire is to refocus education on key issues in autism and the mobilization of communities to create a sustainable safety net, effectively providing a balance of services in the community that they feel has not been adequate.

The project was born out of an observation that while various niche-interest autism groups are critical, the effectiveness of these groups is restricted to only those niches where a multitude of different understandings and restrictions for participation and inclusion may exist. For Lawrence and Tim, this involves breaking down any existing discrimination between socioeconomic status, ethnicity, and geographic locations. Once freed of these barriers, the project will allow the voices of all to be heard, while adding to a collective consciousness of autism and how it affects millions of our friends and families worldwide.

In order to address the broad range of views and opinions on autism and autism care, Lawrence and Tim first seek to recognize and acknowledge the achievements of these smaller communities, while paying it forward to the creation of a greater community of autism supporters and workers who will make a difference in saving lives. Lawrence and Tim invite businesses, non-profits, the medical community, and individuals from neighborhoods around the world to participate in the cause. "The Tommy Foundation is thrilled to have a major player jump into the arena with us, and look forward to continuing to make the autism movement a stronger place for its people," says Rich Everts, co-founder of The Tommy Foundation, which is in the umbrella of AutismAid, and who is also the director of The United States of Autism (2012). Currently, Lawrence and Tim are in the process of formulating the criteria and standards for participation, as well as collecting nominations and submissions from regional service providers. If you would like to learn more and be involved, please email Lawrence Goldfarb at larry@lrgcap.com or Tim Welsh at realtannersdad@gmail.com.

Follow & like Lawrence Goldfarb at https://twitter.com/LarryRGoldfarb and https://www.facebook.com/BayAreaAutismForum
Follow Tim Welsh at https://twitter.com/TannersDad

Insurance Legislation in Oregon

The Lund Report offers some background on Oregon:

Although Oregon’s next legislative session is 10 months away, work is already beginning on legislation to establish requirements for health insurance coverage of autism spectrum disorders and streamline the process of obtaining care.

A closed door work session was held at the Capitol on May 1, and included legislators, insurance industry representatives and autism advocates such as Portland resident Paul Terdal, the father of two autistic sons.

During the 2009 legislative session, Terdal made his first attempt at becoming involved in changing the laws regarding insurance coverage of autism. His efforts were limited, though, as he talked to some legislators but didn’t really lobby the issue.

By 2011, Terdal was much more active in the process. He helped work on a proposed law, Senate Bill 555. That bill made it through the Senate Health Care, Human Services and Rural Health Care Policy Committee and went to the budget-writing Ways and Means Committee, where it stalled until the session adjourned.
...
With new figures in hand, a meeting took place in May with representatives of the Oregon Health Authority, the Public Employees’ Benefit Board, Sen. Chris Edwards (D-Eugene) and Rep. Peter Buckley (D-Ashland). Terdal said that everyone was in agreement that the initial analysis was incorrect. However, it was very late in the session at a time when lawmakers were struggling to balance the budget as revenues continued declining.

Buckley, who co-chairs the Ways and Means Committee, confirmed that popular programs such as Temporary Assistance for Needy Families were still being cut, making it difficult to create or justify any new programs.

Finally, in February, a similar bill was introduced, Senate Bill 1568, but Sen. Laurie Monnes Anderson (D-Gresham), who chaired the healthcare committee, never called for a vote, saying she needed more details about its impact on the insurance industry.

Congressional Update

From Autism Votes:

Autism Speaks Applauds Congressmen Moran, Doyle on Introduction of ‘AUTISM Educators Act’
WASHINGTON, DC -- Autism Speaks, the nation's leading autism science and advocacy organization, today applauded Congressmen Jim Moran (VA-8) and Michael Doyle (PA-14) for introducing the AUTISM Educators Act to improve training for teachers who work with students on the autism spectrum.

The bill (HR.5195) would pilot a five-year grant program for public schools to partner with university or non-profit programs in creating training programs for teachers who work with large numbers of high-functioning students with autism. The training programs would incorporate parental involvement and retention of skilled educators.

The bill, called the Autism Understanding and Training in School Methodologies for Educators Act of 2012, states that classroom, teachers and staff “often are not adequately trained to work effectively with students with autism spectrum disorders, who have a wide diversity of characteristics.” The bill also noted the additional challenges faced by members of the military and foreign service due to frequent moves which disrupt the continuity of their children’s education.

"This legislation is the product of a grassroots effort by parents, instructors, school officials and caring communities," said Moran. "Autism Spectrum Disorders are being diagnosed at an exploding rate. We have a responsibility to do everything in our power to provide the best education for our children."

The bill has been referred to the House Education and Workforce Committee.

“Improved training for teachers and school districts is an important component of mainstreaming children with autism into their educational environment,” said Peter Bell, Autism Speaks executive vice president of programs and services. “Better access to behavioral therapy in conjunction with autism-friendly educational settings are key to successful mainstreaming.”

Doyle said, “It's essential that educators are able to take advantage of our rapidly growing knowledge base - and that we increase the number of teachers trained to help autistic students. It's one of a number of actions the federal government should take to help individuals with autism and their families.”

Autism Speaks Lauds Senators Casey, Isakson for Proposal to Raise Autism Funding with New Postage Stamps

WASHINGTON, DC -- Autism Speaks, the nation's leading autism science and advocacy organization, today applauded U.S. Senators Robert Casey Jr (D-PA) and Johnny Isakson (R-GA) for proposing new funding for autism research and services through the sale of autism awareness stamps by the U.S. Postal Service.

The bipartisan bill, S.2472, would direct the U.S. Postal Service to create and sell the stamps over a five-year period to supplement federal support for autism research and services. The “semipostal” stamps would be sold at slightly higher cost with the extra revenues dedicated to autism research and services.

The images used on the stamps would use artwork created or chosen in consultation with individuals on the autism spectrum.

“Autism Speaks commends Senators Casey and Isakson for this innovative approach to raise autism awareness along with new funding for autism research and services,” said Peter Bell, Autism Speaks executive vice president of programs and services.

Assuaging DSM-5 Concerns

Will DSM-5 cause some people on the spectrum to lose their diagnosis -- and their services? The Wall Street Journal reports on preliminary data presented at the American Psychiatric Association annual meeting:

On Sunday, the committee overseeing the changes to the autism criteria announced data from so-called "field trials" conducted by several academic centers showing that children diagnosed with autism or related disorders using the current criteria almost always received a diagnosis using the proposed new criteria as well.

The prevalence of autism using both criteria was essentially unchanged, though there were a few cases where children were diagnosed by one set of criteria and not the other, according to Susan Swedo, head of the work group and a senior researcher at the National Institute of Mental Health. Over 600 children were tested as part of these trials.

The concern that children who need services for autism-related symptoms will be denied them because of proposed changes to the autism diagnostic criteria is "not true," said Dr. Swedo.

Ne'eman on Lovaas

Ari Ne'eman of the Autistic Self-Advocacy Network recently spoke at Bloomfield High School in South Orange, New Jersey. Marcia Worth writes at The South Orange Patch:

Citing one renowned researcher, Dr. Ivar Lovaas, Ne’eman noted that rendering autistic patients “indistinguishable from their peers” – in other words, able to mimic ‘normalcy’-- was widely seen as "success” in the field of autism treatment.
...
“I don’t know many people whose goal, when they wake up in the morning, is to be indistinguishable from their peers,” noted Ne’eman wryly in his speech. “Lovaas’ studies weren’t measuring independent living skills or academic skills like science or math, they were measuringindistinguishability from peers. Is that meaningful?”

Designing treatment methods based on conformity to an opposing ideal automatically defines the starting point, "acting autistic," as "wrong," Ne’eman said.

Exploring the notion of different = wrong in a separate context, Lovaas conducted other studies, notably the “Feminine Boy Project” conducted at UCLA medical center in the 1970s, which ran concurrently with the UCLA “Young Autism Project.”

“The purpose of the Feminine Boy Project was “to rescue children from homosexuality. Now, we understand this to be an astonishingly disreputable undertaking,” said Ne’eman, noting that Lovaas’ treatment methods for the Young Autism Project have not been challenged in the same way in the intervening years.

“The medical model of disability was viewed from a perspective of charity but not from a perspective of civil rights,” he said. “Horrible things happen in our society to people who are not ‘normal’.”

...

“Acquiring social norms like hygiene are valuable because there’s a reason for it. It’s not like eye contact,” he said, referring to the difficulty many autistic people have with meeting other people’s gaze. “You have to ask, is this something that is a problem for the child or the people around the child? It’s perfectly legitimate to encourage skill-learning that will help children survive and get a job, etc. But hand-flapping doesn’t hurt anyone. It can be very important to us and very comforting to us.”

Journal Issue on Children With Disabilities

The Future of Children,a joint project of the Woodrow Wilson School and Brookings, has a new volume, Children with Disabilities

Children with Disabilities
Volume 22 Number 1 Spring 2012

Full Journal (2.1 MB)
Executive Summary (161.0 kB)
Policy Brief (289.8 kB)
Article Summaries
 

Contents

Children with Disabilities: Introducing the Issue

Janet M. Currie and Robert Kahn

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The Changing Landscape of Disability in Childhood

Neal Halfon, Amy Houtrow, Kandyce Larson and Paul W. Newacheck

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Childhood Health: Trends and Consequences over the Life Course

Liam Delaney and James P. Smith

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The Economic Costs of Childhood Disability

Mark Stabile and Sara Allin

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Disability and the Education System

Laudan Aron and Pamela Loprest

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Health Insurance and Children with Disabilities

Peter G. Szilagyi

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How Can Quality Improvement Enhance the Lives of Children with Disabilities?

James M. Perrin

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Emerging Technologies and Their Impact on Disability

Paul H. Wise

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Prevention of Disability in Children: Elevating the Role of Environment

Stephen A. Rauch and Bruce P. Lanphear

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Appendix 1

Future of Children Staff

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Appendix 2

Future of Children Staff

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Appendix 3

Mark Stabile and Sara Allin

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DSM Comments

At Disability Scoop, Michelle Diament reports on a public comment period for DSM-5:

The panel responsible for crafting new diagnostic criteria for autism, intellectual disability and other disorders is seeking public comment for a third and final time.

The American Psychiatric Association said Wednesday that it will accept public comments now through June 15 on proposed changes for the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders. The first revision in more than a decade to what’s considered the bible of mental health disorders, the new edition of the manual is expected to be published in May 2013.

Among the most controversial proposals is a dramatic change to the definition of autism. Those behind the DSM are looking to fold autistic disorder, Asperger’s syndrome, childhood disintegrative disorder and pervasive developmental disorder, not otherwise specified under one umbrella diagnosis of “autism spectrum disorders,” with diagnosticians indicating a level of severity associated with an individual’s condition.

Here is the APA's DSM page. 

Insurance Action in Louisiana, Vermont, and Alabama

In Baton Rouge, Louisiana, The Advocate reports:

More children with autism spectrum disorders would be able to get health insurance coverage under legislation that sailed through the Louisiana House on Tuesday.

The House voted 96-0 for the legislation and gave bill sponsor state Rep. Franklin Foil, R-Baton Rouge, a round of applause after the vote. Seventy state representatives joined as coauthors of the House Bill 771.

... 

Foil’s measure would expand the mandatory coverage in current law for coverage of diagnosis and treatment of autism spectrum disorders. He said he is trying to provide some additional relief to parents faced with the cost of expensive therapies and children in need of care.
HB771 would raise from age 17 to age 21 the age for mandatory coverage and eliminate a lifetime maximum benefit of $144,000. The legislation would also extend the mandatory coverage to any plan issued to an employer with 50 or fewer employees. The new requirements would go into effect Jan. 1, 2014.

Foil said the current mandated coverage had been estimated to increase policy costs by $1.25 per month. The actual cost turned out to be 29 cents per month. He said the expanded coverage would add only 2 cents a month.

Autism Votes reports:

The Vermont Senate completed legislative action on a bill that would broaden the state's 2010 autism insurance reform law to cover more children and young adults and sent it to Governor Peter Shumlin for his signature. The bill, S.223, is one of several in the nation to expand existing autism insurance benefits and the first to be voted out of a state legislature. Similar bills are moving in Louisiana and Kansas.

Sponsored by Senator Anthony Pollina (D-North Middlesex), the bill would require coverage for the screening, diagnosis, testing and treatment of childhood development disorders, including autism, from birth through age 21. Under existing law. those benefits are limited to children aged 18 months through six years old.

Coverage includes state-regulated private indivdual and group health insurance plans, as well as Medicaid, the Vermont health access plan, or any other public health care assistance program. The Medicaid and public health plan provisions would take effect July 1; the private health plan coverage would begin October 1.

The bill also requires the Agency of Human Services, in consultation with Autism Speaks and health insurers, to assess whether eligible individuals are receiving evidence-based services, how the services could be improved, and their fiscal impact by January 15, 2014.

Alabama Live reports:

Alabama lawmakers gave final approval today to a watered-down version of legislation aimed at getting more insurance coverage for autism treatment.

The House of Representatives voted 96-0 for the bill, sending it to the governor for his signature.

The legislation requires insurance companies to offer coverage for the treatment of autism, including for a costly behavioral therapy that now is rarely covered. Businesses could choose whether to offer the coverage as part of their insurance options for employees.

An original version of the bill would have mandated the coverage, but the sponsor said he did not have the votes to get that passed.

"It's one more step down the road for providing benefits and better opportunities for those on the autism spectrum in Alabama," said sponsor Sen. Cam Ward, R-Alabaster. "Obviously it's not everything we wanted, but it's definitely still moving it forward."

Action Alert from Autism Speaks

May 1, 2012  ACTION ALERT!
Over 140 House members from both political parties have signed on as co-sponsors of ABLE, a bill that would allow families raising children with disabilities to save tax-free for their future needs. Now it's time for your U.S. Representative to join them!Send them an email asking for their support for HR. 3423, the Achieving a Better Life Experience Act. And ask your Senators to co-sponsor the Senate version of the bill, S.1872, if they have not already. Momentum is on our side! Let's get this done in 2012!

Here is How YOU Can Help:

1) SEND YOUR REPRESENTATIVE AND TWO U.S. SENATORS AN EMAILYou can email them here. It takes just a few minutes to sign up and send it. We have the basic letter already drafted for you, but take a minute to add one paragraph to make it personal about your family and the person you love with autism. We also have letters ready for you to send to your state's two U.S. Senators either thanking them for being an ABLE co-sponsor or asking them to sign on. 2) SPREAD THE WORD! Ask your friends and family to help you by sending in a quick email of their own. You can send an email to them after you take action, and also post something like this on your Facebook page: "Please help me contact our Members of Congress to ask that they support the ABLE Act and vote it out of Congress. This bill will allow me to save tax-free for the future needs of (CHILD's NAME) in the same way parents save for college. It takes 5 minutes and will help our family. Write DONE so I can thank you!" Link to: www.autismvotes.org/ABLECall

The ABLE Act, introduced with strong bi-partisan support, would amend Section 529 of the Internal Revenue Service Code to allow individuals with disabilities and their families to deposit earnings to tax-exempt savings accounts. The funds could be used to pay for qualified expenses, including education, housing and transportation, and would supplement, not replace, benefits provided through private insurance, employment or public programs.
You can read more about the ABLE Act here.
Ask your friends and family to help you pass this important legislation. Be sure to email TODAY!
Shelley Hendrix

Director of Grassroots DevelopmentAutism Speaks

California Disparities

Alan Zarembo writes in The Los Angeles Times:

California lawmakers and advocates for children with autism assailed the state Department of Developmental Services during a hearing Monday over the deep racial and ethnic disparities in how it spends money on the disorder.

"Families that are already the most disadvantaged get the least," Martha Matthews, an attorney for the advocacy group Public Counsel, testified before a panel of legislators in Sacramento. "This is exactly the opposite of what it should be."

State Sen. Darrell Steinberg, who heads a committee on autism, called for legislation to provide greater accountability in the $4-billion-a-year entitlement program for people with developmental disabilities. Autism now accounts for about a quarter of the 252,000 people in the state system and 45% of all new disability cases it accepts. Budgets have not kept pace.

Steinberg ordered the hearing in response to articles in The Times documenting how obtaining help for an autistic child can require waging battle against the gatekeepers of state services. Parents with the time and resources to fight receive significantly more, resulting in enormous racial and socioeconomic disparities.

It is not uncommon for autistic children from affluent families to receive 25 hours a week of one-on-one behavioral therapy. Advocates for poorer families, on the other hand, said parents aren't necessarily even told what public services are available.

Background and literature review here.

Video:  part 1 and part 2