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Archive for February, 2011

Kermit the Frog Was Right: “It’s Not Easy Being Green”

February 23, 2011 3 comments

Autism Speaks and the Association for Professional Behavior Analysts Team Up for a Workshop on Autism Insurance Reform

This post is by Lorri Unumb, Esq., Senior Policy Advisor and Counsel, Autism Speaks.

For several years now, Autism Speaks has kept a map of the United States on our wall and on our Autism Votes website where we track states that have passed autism insurance reform bills.  Our map is color-coded:  Blue is for states that are not pursuing autism insurance reform; yellow is for states that are developing insurance bills; red is for states where autism insurance reform bills have been endorsed by Autism Speaks; and green is for states that have enacted autism insurance reform laws.

We celebrate with great joy the addition of every new green state, of which there are now 23.

But over the course of the last couple of years, we have developed a great appreciation for the fact that passing a new law – becoming a green state – brings with it not only joy, but also major headaches. Passing a law is but the first step toward reform; implementation and enforcement of the new laws can be equally difficult.  A new law on the books will not make adequate networks of participating providers suddenly appear.  A new law will not make appropriate CPT codes and rate structures magically materialize.  Advocates in newly green states face mountains of work and many thorny issues.  In other words, to quote Kermit the Frog, “it’s not that easy being green.”

To assist families, providers, regulators, and others who are working to pass or implement new autism insurance laws, Autism Speaks has partnered with the Association of Professional Behavior Analysts to present a full-day workshop on Health Insurance Coverage of ABA Treatment for Autism Spectrum Disorder.”

This workshop will feature leading experts in the field in two sessions:

  • The morning session is called “Obtaining Health Insurance Coverage of ABA Intervention for Autism” and features Gina Green, PhD, BCBA-D, of the Association of Professional Behavior Analysts; Eric V. Larsson, PhD, BCBA-D, of the Lovaas Institute Midwest; Billy Edwards, MS, BCBA, of Behavioral Innovations; and myself.  This session will provide participants with information, suggested strategies, and supporting resources for advocating for legislation to require health insurance coverage and working with insurance companies to obtain coverage of ABA intervention in individual cases. Topics will include making the case for the efficacy and medical necessity of ABA intervention for autism, the costs and cost savings of insurance coverage, qualifications of ABA providers, the basics of becoming a health insurance provider, working with health plans, and billing.
  • The afternoon session is called “Implementing Autism Insurance Laws” and features Bryan Davey, PhD, BCBA-D, of the Arizona Centers for Comprehensive Education and Life-Skills; Daniel Unumb, Attorney; Susan Butler of the Early Autism Project; as well as Dr. Green and Dr. Edwards.  This session will focus on topics such as appealing denials of coverage, addressing provider reimbursement issues, and working with state insurance officials and others to ensure compliance with mandates. Successes as well as obstacles to successful implementation and strategies for overcoming those obstacles will be discussed from the perspectives of advocates, family members, and providers of ABA treatment.

This exciting workshop will take place on Thursday, March 31, 2011 as a pre-conference event adjoining the first annual conference of the Association for Professional Behavior Analysts.  The workshop (March 31) and the conference (April 1-2) will take place at the Marriot Copley Plaza in Boston, and both are open to the public.  Registration is now open and continues through March 15.  Make plans now to join us for this informative event.

Check out our flyer for more information.  Space is limited, so register today at: www.apbahome.net/convention-overview.php

The Void a Therapist Can Leave

February 23, 2011 16 comments

This week on Parenthood, Do Not Sleep with Your Autistic Nephew’s Therapist,’ Adam and Kristina are dealt a huge blow when Gaby, Max’s behavioral therapist, gives notice that she can no longer work with them. Adam and Kristina are unaware at the time why she is leaving, but she is visibly upset.

Adam and Kristina are stirring and unsure what do. They are trying to pick up where Gaby left off, but Max is full-blown meltdown mode and it seems there is little hope in site.

Have you experienced the departure of a therapist that affected your family? How did you handle it?

Please stay tuned this week for even more Parenthood discussion. Watch the full episode here, so you will be ready to participate!


Autism in the News – 02.23.11

February 23, 2011 1 comment

Girl, 7, who drowned in Lawton had struggled to overcome autism (Lawton, Okla.)
Doctors once said Savannah Martin would never talk, but she defied the early diagnosis and started to speak. Then she learned to read. She even tried to learn to swim. Read more.

Autism bill sent to McDonnell (The Franklin News-Post)
Legislation that would require health insurance companies to provide coverage for autism for children between the ages of 2 and 6 now goes to Virginia Gov. Bob McDonnell for his signature. Read more.

Parents lose Supreme Court appeal in vaccine lawsuit (Washington, DC.)
The Supreme Court closed the courthouse door Tuesday to parents who want to sue drugmakers over claims that their children developed autism and other serious health problems from vaccines. The ruling was a stinging defeat for families dissatisfied with how they fared before a special no-fault vaccine court. Read more.

Free Autism seminar in Clark March 2 (Clark, N.J.)
A series of free seminars is being offered to parents and teachers of children with disabilities on effective teaching of social skills. One of the events in the seminar series will be held locally in Clark.  Read more.

School board settles VOA suit (Orlando Business Journal)
At its Feb. 22 meeting, the Orange County School Board settled its lawsuit against Orlando architecture firm VOA Associates Inc. Read more.

Autism Tissue Program Reaches Milestone 100th Publication

February 22, 2011 6 comments

A journal article published this week studying sex-linked hormones in brain is the 100th paper describing results from brain tissue provided by the Autism Tissue Program. Taken together, the 100 papers, all published in peer-reviewed scientific journals, represent a huge advance in our understanding of the brains of individuals with autism.

The first publications were released in 2001 and built on existing evidence of developmental changes in the brain of those with autism.  The increase to 100 papers in 10 years mirrors the growth of the brain tissue resource from about 20 brains at the start to currently over 100 brains from individuals with a clear diagnosis of autism, ranging in age from 3 to 60.  The papers also show the use of a wide range of specialized resources developed by the Autism Tissue Program including MRI, brain tissue biopsies, genetic material from brain tissue and a large permanent brain library of slides all derived from post mortem brains.

The 100th publication is by Valerie Hu, Ph.D. and colleagues at the George Washington University Medical Center titled: ‘Sex hormones in autism: Androgens and estrogens differentially and reciprocally regulate RORA, a novel candidate gene for autism’.  The aim of the research, funded in part by Autism Speaks, was to examine a particular sex-linked candidate gene found throughout the human body, including brain tissue. This line of research could provide some rationale for the fact that four times more males are affected with autism than females. Dr. Hu’s research shows that both male and female hormones have varying and significant effects on the activity of the RORA gene product.  The RORA gene product regulates an enzyme (aromatase) that converts testosterone into estrogen.

This study offers a molecular mechanism for understanding the sex bias towards males by increasing levels of testosterone. This paper is the first report a sex hormone-responsive candidate gene for ASD. RORA is important for the development of a part of the brain called the cerebellum. The cerebellum is involved in controlling some types of movement, but also plays a role in cognitive tasks such as redirecting attention. RORA also serves to protect neurons against inflammation and oxidative stress.

Dr. Hu and colleagues showed that the female hormone estrogen increases the expression of RORA, while the male hormone androgen (dihydrotestosterone) decreases it. Interestingly, the interaction is somewhat circular as RORA regulates the expression of aromatase, an enzyme that converts testosterone to estrogen.  According to Dr. Hu, “We observed in the brains of individuals with autism a link between decreased in activity of RORA and a reduction of aromatase activity. This reduced activity would lead to build up of testosterone and a decrease in estrogen.”

This study provides a molecular explanation for the higher levels of testosterone observed in some individuals with autism. These findings also suggest a mechanism for the male bias in ASD because female brain tissue may benefit from the protective effects of naturally higher levels of estrogen In addition, the estrogen receptor shares some of the same target genes as RORA, thus compensating for RORA deficiency, which the research team has also observed in some individuals with ASD.

Zeroing in on specific gene effects in the brain is one of several research avenues undertaken by scientists that can only be done through the direct examination of human brain tissue. The value of the study of human brain tissue is the interpretation of the data in the context of the current knowledge about autism. Combined with post mortem imaging and genetic analysis scientists can gain a broader and more thorough understanding of ASD.

Scientists studying brain tissue today need to consider disorders that can co-exist with autism. The Autism Tissue Program takes great care to fully document medical conditions of brain donors.  The informatics portal catalogs over sixty disorders or conditions occurring in those with a diagnosis of autism including epilepsy, Fragile X, Tuberous Sclerosis Complex, Duschenne Muscular Dystrophy, Angleman, Rett and Asperger Syndromes and partial duplications or deletions of several chromosomes.

The Autism Tissue Program has emerged as an important resource of not only brain tissue but also as in informational hub of research results from an international group of scientists.  None of this work would be possible without the dedication of the families who chose to donate brain tissue of loved ones to the Autism Tissue Program. To register you or your family in the brain donor program, please visit www.autismtissueprogram.org for information and online registration, or call 877-333-0999 for information or to initiate a brain donation.

Click here to view the full list of 100 papers the Autism Tissue Program has made possible.

Autism in the News – 02.22.11

February 22, 2011 1 comment

Brain scans may someday detect autism (CNN Health)
Researchers are hoping that by using a common tool for measuring of brain activity in a new way, they may be one step closer to identifying whether  a child is a greater risk for autism. Read more.

Shelby coach steps down to help son battle autism (Shelby, Ohio)
How do you devise a game plan from an incomplete scouting report? How do you prepare for an opponent you know almost nothing about? Read more.

Autistic workers can help firms grow (Star Tribune)
Temple Grandin wants more autistic people in your workplace. If they don’t become part of the workforce, your company will lose out. Read more.

Barn Fire Kills Six Therapy Horses (Pleasant Hill, Mo.)
A fire destroyed a metro stable, killing half a dozen therapy horses.  The horses were lifelong partners and provided therapy for young people in need. Read more.

One Class at a Time: Lowell Elementary School (Missoula, Mont.)
The satisfaction of a job well done is an empowering feeling for Linda Burr’s students at Lowell Elementary School, especially those with autism. Read more.

How do you manage meltdowns?

February 22, 2011 255 comments

We are starting a new feature, ‘Topic of the Week.’ These topics stem from submissions from our community. If there is anything in particular that you would like to see featured, please contact us!

How do you manage public meltdowns? What strategies do you have for coping? Do you enlist other people or things around you for help or comfort? What ways do you sooth your child or yourself?

Catching Up with Zev and Justin from Amazing Race

February 20, 2011 11 comments

The Amazing Race:Unfinished Business,’ returns to a cast of familiar faces looking to make good on their mistakes. Tune in for the premier, Sunday February 20, 8/7  EST.

Zev and Justin’s friendship started six years ago when they were working as camp counselors and the two have been very close ever since.  Zev has Asperger’s Syndrome, but they don’t let it affect their relationship.  They share friends and interests, and the friendship is as mutually beneficial as any could be.

For more on Zev and Justin, check out their ‘Amazing Race’ Biography.



Are you excited about the upcoming season of Amazing Race?
Justin Kanew: We are really excited!

How are you guys connected?
J: We both went to Greylock Camp in Massachusetts as kids and was a little older…
Zev Glassenberg: You are still older than me…
J: (Laughs) I came back as a counselor and we ran a world-class flag football program together.

Why did you choose to come back?
Z: Well, we wanted to come back for redemption and also for an amazing adventure.
J: I was literally praying for the opportunity to return since Camp Zobio when we lost the passport.

What makes you guys such a good pair?
J: Zev says he’s the amazing and I’m the race!

What is the game plan for this season?
Z: Well we just want to win and to have a good time and compete the best we can. We just will rely on each other and not on other people.
J: We also want to keep up a good attitude and just to be good to each other. We do not trust anybody! Just wanted to make sure we were standing on our own feet

Zev, how does having Asperger’s Syndrome affect you as a player in Amazing Race.
Z: The first time I was going into this brand new world and didn’t know what to expect. I had to change my routine and that was bothersome and worrisome. This time I knew more of what to expect, but it was still worried.

What is it like being back on The Amazing Race?
Z: Amazing. I lived my dream twice! I had a blast! I want to do it again and again and again. They should just have us on every season!
J: Ha, Ha, Ha!

So what are your day jobs?
Z: I’m an aspiring actor.
J: I work for National Lampoon making movies. It is a fun place to be.

What are your hobbies and interests?
Z: Reading books.
J: And rooting for the lakers
Z: I’d say that’s an interest.
J: Explain your art
Z: I do stuff with whole punches. I use a special paper and punch holes then glue whole punches into a design.

We have to ask, did you hang onto your passports this time around?
J: Heyyoooo!
Z: We were checking every 5 minutes.
J: I thought we’d get through one interview without that question! Zev had permission to ask me every 5 seconds. We were constantly checking!
Z: It was like a newborn baby. We wanted to make sure it was there and alive!

Catch up with the guys on Twitter at  @zevglassenberg and @justin_kanew

Make sure to tune into the Amazing Race, Sunday, February 20th on CBS! Check your local listings.

Autism in the News – 02.18.11

February 18, 2011 1 comment

Caldwell College to Hold 5K Run/Walk for Autism (The Caldwell Patch)
Runners, walkers and anyone whose life has been affected by autism, it’s time to mark your calendar for the second annual 5K Run/Walk for Autism at Caldwell College. Read more.

The Autistic Sports Nerd (The Tangerine)
Hey guys, the Autistic Sports Nerd here. I hope everyone had a happy and safe Autism Sunday. I had a lot of fun that day. Let’s get into the sports talk. Read more.

They’re assets at work — and they’re autistic (Twin Cities Pioneer Press)
He’s nervous and awkward with people, can’t tell the difference between biting sarcasm and sincere praise, and doesn’t take well to crowded rooms, loud noises or sudden interruptions. Read more.

Faculty research attempts to better understand autism (The Oracle)
Faculty research may provide the tools to better understand autism. Psychology professor Shannon Morgan has been conducting research that could benefit the lives of people with autism. Morgan’s research is in place in order to “see how people with autism see the world around them.” Read more.

Craig Nicholls of the Vines Copes with Autism (Autism Key)
In the Spring of 2004, an Australian group known as The Vines quickly became one of the hottest bands in the world, topping charts and mentioned in the same breath as bands such as Nirvana. Read more.



John Robison to Appear on ‘Ingenius Minds’

February 18, 2011 8 comments

Tune in on Thursday, February 24 at 10 p.m. EST to see John Elder Robison appear on Ingenious Minds.

Ingenious Minds enters the lives of savants: individuals who possess an extraordinary ability in areas such as art, music and mathematics, while also suffering from intellectual and developmental disabilities.

John Robison never had a high school degree, but he worked as a highly skilled mechanical engineer designing sound equipment, special effects, cutting-edge toys, nuclear test apparatus, and medical lasers.

John is a savant with Asperger’s Syndrome, which has given him a preternatural understanding of mechanics, but has made his social and work life exceptionally challenging. For more information about this episode, visit here.

 

 

Tips on Applying for Financial Aid for your Family Member with Autism

February 18, 2011 15 comments

This is a blog post by J-Jaye Hurley, Autism Response Team coordinator on the Autism Speaks Family Services team and the mother of a child with autism.


1.      Print all pages of the application and read them carefully. Twice.  . . These applications are usually lengthy and complex so you must review their own requirements.  Many applications ask for similar items (tax statements, IEPs, etc) but they are ALL in a different format.  If you do not provide the information they request AND in the format they request, you can be denied.  If you do not send in all the information at the same time, you can be denied.  Also review their application criteria before you apply.  A friend of mine filled out a long application only to realize they didn’t provide assistance for the therapy she was interested in.  Know all requirements before diving in.

2.     Be aware of deadlines.  Some family grants are year-round but the majority I applied for had specific deadlines. In fact, I was unable to apply for one that I wanted because I missed their annual deadline.  If you are requesting therapy notes or letters of recommendation, make sure you allow plenty of time to gather all information, complete application and send in PRIOR to that deadline.  If they receive your application after the deadline, you will be denied.

3.     Be concise and honest.  Most organizations review thousands of apps, and the majority of the application is financial information.  However, most apps ask the parent for some personal information about the child.  Make sure you tell them about your child, why you need their help and how this will make a difference for your child and family.  They don’t need your entire life story, but they do need you to be honest and upfront about your needs and situation.  Most of our stories speak for themselves so just be yourself and speak from the heart.  We are passionate parents and advocates by nature so go with what you know – your child.

4.     Get recommendations.  Some applications say they will accept letters of recommendation but don’t require them. I recommend your seeking those letters as they only serve to provide additional information on your child and family to this anonymous committee.  Ask your therapists, physicians or family members.  You can save letters and use them for multiple applications each year.

5.     Have a friend/spouse review your apps.  Before you mail in your completed applications, have someone review it for you.  My husband caught typos & had suggestions.  As a former English teacher, I always recommend having another pair of eyes review your writing.  Applications are no exception!

6.     Include a picture of your beautiful child!  This helps bring a personal and real connection to those reading your applications.

7.     If at first you don’t succeed, apply and apply again!  I was turned down for some of my applications and I plan to re-apply before 2011 deadlines.  Make a copy of your completed application, as it stays basically the same from year to year.  It is much easier to update last year’s application than start from scratch on a 10 page app.  Update your new information and try again.

Check out this article in Family Services Community Connections.

Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, selectFind a Local Resource and browse the Resource Guide.

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