Tuesday, January 27, 2009
Founded in 1974, ABA International is the professional organization for behavior analysts, a group that has seen demand for its members' services rise with the population of diagnosed children with autism spectrum disorders. (See the organization's website, including this page with information for parents.)
Choices about what kinds of approaches to use for helping children with autism spectrum disorders abound, and information about alternative therapies, diets, treatments and medicines circulate around the web and among parent discussion forums. Applied behavior analysis—backed by research and evidence that when trained therapists with expert supervision deliver services, they help people gain important skills—has gained important support among autism experts, educators and the medical community. See more about ABA in the Autism Bulletin archives.
As a parent, I have found it valuable to attend educational events; it's a way to connect with both professionals who are doing research about autism and meet up with other parents. It's a way to know you are not alone. I attended the ABA International conference when it was in Boston several years ago and came away impressed by the experience and knowledge of the presenters.
This year's event will address topics such as adults with autism, ABA school programs for children, Florida's autism legislation and ways to implement successful treatments for autism. Below is a brief overview of the components of the conference.
This year's conference, "Research to Practice: Making Real Changes in the Lives of People with Autism," will host 15 distinguished ABA experts presenting resources and information that teachers, therapists and parents can use to improve the lives of those living with an autism diagnosis. Presentations will focus on a variety of topics relating to three common themes important to the future of ASD treatment methods:
· Treatment Developments - A summary of the latest progress in behavioral intervention methods and how applied behavior analysts are helping to integrate people those with ASD into the community.
· Success Stories - Using science to guide autism treatment taking a look at the most recent and reliable case studies to help determine the future of those living with ASD.
· In Their Own Words - Personal observations and recommendations from professionals and parent advocates who are most closely affected by ASD.
See below for a rundown of speakers, provided by ABA International:
ABA Autism Speakers Summary
Monday, January 26, 2009
Advocates from AutismVotes.org, an initiative of the advocacy group Autism Speaks, have set up a website for this Massachusetts initiative. It's one of several efforts around the country to raise awareness of the issue of autism insurance, and to press for increased coverage.
The autism insurance issue has been a key legislative effort for autism advocates for quite some time. As awareness about the prevalence of autism spectrum disorders has increased, so have calls for ways to help families who are thrust into finding ways to help their children, with early intervention services and special education programs. (Calls to help young adults and adults have not been as loud, but one can anticipate they will grow as the cohort grows and matures.)
In state after state (see Autism Bulletin archives for articles on South Carolina, Texas, Pennsylvania and other states), the battle shapes up to be one where families and advocates point out the need for services and the health insurance industry argues the cost is too high. Massachusetts is among those states where we can expect to see that conflict play out this year.
Below are two documents (e-mail readers will see links, and blog visitors should see an image of the documents embedded in this article). The first document is a copy of House Bill 67, which calls for insurance coverage for autism services. The second document is an Autism Speaks advocacy paper, prepared in 2007, outlining the reasons for supporting this type of legislation.
MA HouseBill 0067_001 - As Introduced Jan 2009
Below, find the Autism Speaks document that lays out an argument in favor of autism insurance coverage.
Arguments for Private Insurance Coverage
Tuesday, January 20, 2009
If you are receiving this by e-mail, you can find the chart by clicking here. Green states—Arizona, Florida, Illinois, Indiana, Louisiana, Pennsylvania, South Carolina and Texas—have passed laws that "require private insurance companies to cover autism services, including Applied Behavior Analysis (ABA)."
Red states—Michigan, New Jersey and Virginia—are considering bills endorsed by Autism Speaks that reform autism insurance coverage.
The map also shows other states—most, that is—which are in some fashion starting to work on an autism insurance bill.
There have been some updates since Autism Speaks published this chart. These include:
•Washington State, where advocates today issued a press release on pending legislation. From the release:
•Wisconsin, where autism advocates report: "Wisconsin's new Legislative session has begun and in it is this introduction of a Bill for Autism Insurance dated January 8th, 2009. It has been read for the first time and was referred to the committee on Health, Health Insurance, Privacy, Property Tax Relief, and Revenue on the same date." According to an analysis by the Wisconsin Legislative Reference Bureau:
Washington lawmakers are getting ready to consider two companions bills, HB1210 sponsored by State Representative Brendan Williams (D-22) and SB 5203 sponsored by State Senator Steve Hobbs (D-44), that will require health insurance plans to cover diagnosis and treatment for autism spectrum disorders, including services like Applied Behavior Analysis, for individuals up to age 21.
The bills, referred to as "Shayan’s Law," follow the recommendations of the Caring for Washington Individuals with Autism Task Force in their Executive report to the Governor (December 2007). The report lists health insurance coverage of autism-related treatments within Washington State as its number one priority recommendation.
The grassroots organization, “Washington Autism Advocacy”, made up of parent volunteers, has up to the minute information about the bills on its website www.washingtonautismadvocacy.org.
Both bills were introduced in the legislature the second week of January. Once passed, they will require private insurance companies to pay for diagnosis and evidence-based treatment of Autism Spectrum Disorders, including Applied Behavior Analysis. In addition, they will remove unreasonable visit caps that have left thousands of families facing autism uninsured or under insured. Autism is a neurological condition that affects 1 out of 150 children.
51 State Representatives and 29 State Senators, who recognize the debilitating impact the autism epidemic is having on children, families and schools, have signed on as cosponsors of Shayan’s Law.
This bill requires health insurance policies and self−insured governmental and school district health plans to cover the cost of treatment for an insured for autism, Asperger’s syndrome, and pervasive developmental disorder not otherwise specified if the treatment is provided by a psychiatrist, a psychologist, a social worker who is certified or licensed to practice psychotherapy, a paraprofessional working under the supervision of any of those three types of providers, or a professional working under the supervision of an outpatient mental health clinic. The coverage requirement applies to both individual and group health insurance policies and plans, including defined network plans and cooperative sickness care associations; to health care
plans offered by the state to its employees, including a self−insured plan; and to self−insured health plans of counties, cities, towns, villages, and school districts. The requirement specifically does not apply to limited−scope benefit plans, medicare replacement or supplement policies, long−term care policies, or policies covering only certain specified diseases. The coverage may be subject to any limitations or exclusions or cost−sharing provisions that apply generally under the policy or plan.
• Kansas, where advocates report:
Kate's Law was filed with the Kansas Legislature on January 12, 2009 and assigned Senate Bill Number 12 (SB 12).
It has been referred to the Senate Financial Institutions and Insurance Committee (Senator Ruth Teichman, District 33, chair). Kate's Law must pass out of the Senate FI&I Committee before it can be considered by the body of the Senate. If it passes the Senate, then the process starts all over again on the House side.
Our first goal is to get an early hearing on the bill. To see how you can help, please check the KCAL website and your email regularly.
See the map below. (Thanks to the Washington-based autism advocates for sharing it). If you have updates or news to share about this issue, please don't hesitate to e-mail me or post a comment at the end of this blog post.
As 2009 State Initiatives12.17
Saturday, January 17, 2009
Twitter is a service that allows users to post short messages (up to 140 characters long) on the web. It is an easy way to share news and information and website links with interested people. I receive a lot of information—more than I can post in the short essays here—and I hope this will be a means of sharing more information with you.
I have created a box on Autism Bulletin, at the top right, for you to see the latest Twitter posts, also known as "tweets." If you already have a Twitter account, you can receive these posts in your personal Twitter feed by following http://twitter.com/autismbulletin.
Please let me know if you find this useful. And as always, keep the suggestions and articles coming. If you do share articles with me, it's very helpful if they come with a website link as well as text. Thank you for reading Autism Bulletin.
Monday, January 12, 2009
The DVD, which has a series of 15, five-minute episodes and contains quizzes for viewers to review facial expressions from each episode, costs $57.50 with a portion of the proceeds going to autism research groups and charities including Autism Speaks. The DVDs are available starting January 12, 2009 at The Transporters.com.
There are quite a number of autism-related products aimed at families who are, of course, desperately interested in finding ways to help their kids make gains in communication skills, among other things. You won't find many product references or endorsements on Autism Bulletin because I don't want to recommend you spend precious dollars on anything.
The Transporters is interesting because when it first came out, about a year ago, it was a project supported by the British government, working with the Autism Research Centre at the University of Cambridge's medical school. The UK government supported the development of this video series and made it available to thousands of families at no cost.
I've asked the public relations company for The Transporters if they know of any plans to distribute this DVD to public libraries or other places where parents who can't afford the price may borrow the video.
The other reason this project is interesting is because the champion of The Transporters is well-known autism researcher Simon Baron-Cohen. In developing this project, researchers are leaning on the popularity of cars and trains among young autistic children (does your little one like Thomas the Tank Engine?) while embedding within the front of vehicles people's real faces and expressions. The episodes cover emotions like happy and sad, excited and angry, as well as more nuanced feelings like sorry, proud, surprised, unfriendly, tired, grumpy and worried. The researchers assume that there will be repetition involved in playing the short videos, to reinforce the impressions and messages.
In a press release accompanying the release of the U.S. version of the DVD, Baron-Cohen states:
"Imagine you're the parent of a child with autism and your child doesn't look up at your face, doesn't respond when you call their name, doesn't interact in the normal way. It can be really heartbreaking. The Transporters addresses this challenge by helping children with autism look at faces and recognize feelings. We've found a way to reach children with autism by bringing the social world to them rather than expecting them to come to us."
There are examples of the British version of The Transporters available on YouTube. You can see an example of The Transporters in this YouTube video clip, about five minutes long:
Also see this four-minute video with researcher Simon Baron-Cohen, and a clip showing a child answering questions from the quiz on the video.
Also see from Autism Bulletin archives:
Videos from British Autism Researchers Teach Children to Recognize Emotions
Tuesday, January 06, 2009
This is clearly more of a benefit to the adult siblings of people with disabilities. It's a valuable reminder for families of children with autism spectrum disorders that the needs of siblings continue on as kids grow up.
If you pay attention, there's a stream of media coverage that gets at the issue. National Public Radio broadcast a piece on January 1 about Marissa and her younger brother Andrew Skillings, who is 11 and has Asperger's, a form of autism. You can read, see photos and hear about their relationship by clicking on "Coping with an Autistic Brother" at npr.org. Here's a quote from Marissa:
"Sometimes, if I get really frustrated, I just wish I could change everything: Sell him to the zoo and buy new parents," Marissa says. "But then the times when I'm actually appreciating things and I'm not in the moment when I'm steaming mad, I do appreciate what I have."
"I don't think I'd change anything, 'cause this is my life and this is what I'm used to. Andrew wouldn't be like the Andrew I know and love if he was different, because autism is his whole personality."
You can find more articles related to siblings on Autism Bulletin.