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The Month in Review: Autism Speaks January 2011 Impact

February 7, 2012 Leave a comment

January got everyone off and running quickly as we ramped up several new programs and initiatives for 2012 and literally hit the ground running.

In late January, the New York Times broke a story about the proposed DSM-5 change that triggered an avalanche of discussion, concern and more. To get the latest, catch up on Autism Speaks DSM-5 policy statement and FAQ.

Enjoy this month’s impact highlights!

Science

DSM-5

Autism Speaks issues DSM-5 Policy Statement

 

  • Top Ten January proved to be another lively month, beginning with continued media coverage of our Top Ten Autism Research Achievements of 2011 and the publication of Geri’s annual letter from the CSO. The month culminated with considerable media coverage and community concern about proposed revisions to the medical definition of autism spectrum disorder in the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Understandably, our families are concerned about the potential implications for diagnosis and access to services, and our science leadership has been providing perspective through national media as well as our own blog and a heavily attended webchat. We will be working hard to ensure that the DSM changes do not exclude access to needed services.
  • Adults with Autism  We hosted “Adults with Autism: Sharing Ideas, Filling the Gaps,” a research summit focused on adults development, services, and treatments.  Held in North Carolina, we brought together major donors, scientists, clinicians, and staff to discuss the research Autism Speaks is funding that is investigating what factors lead to the best outcomes in autism, lifetime trajectories, and new services and treatments.  Read all about this incredible and unique event on our science blog.
  • Ireland On Jan 12-13 We held an international conference “Autism Spectrum Disorders: From Clinical Practice to Educational Provisions” at the Irish Centre for Autism and Neurodevelopment Research at the National University of Ireland, Galway. More than 600 delegates from around the world attended. You can read more on the science blog.

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

House in Hand Autism Speaks

Housing and Residential Support Tool Kit

 

  • Community Grants Our Family Services Community Grants recipients for 2011 were announced on January 24th. Over $1 million in awards were issued to 53 community services organizations in the United States and Canada. The focus of the Family Services Community Grants is to promote autism services that enhance the lives of those affected by autism while expanding the field of service providers. The next round of Family Services Community Grants will be announced in February.
  • Video Glossary On January 5th, we launched an updated version of the Autism Video Glossary – a section on autism treatments. Like the first phase, this was a collaborative effort between Autism Speaks, First Signs and Florida State University. The new treatment section expands the Video Glossary’s library with the inclusion of more than 100 video clips from actual therapy sessions illustrating 22 treatments that may be used to help children with autism build skills, connect with peers and family members, and reduce challenging behaviors. It offers families a window into the various treatment options, provides a description of each method, and lists the top five research studies supporting the treatment and where to find more information. Professionals will also find the treatment section useful when working with a family to determine the best course of treatment for a child with autism.
  • Housing We also launched our Housing and Residential Support Tool Kit in January. The tool kit includes a written guide, a catalogue of residential options and supports, featured house of the month, housing resources and housing in the news.   Our hope is that this tool kit will provide information to individuals with autism and their families as they thinking about housing and residential support options.

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

Advocacy

Military families sound off Autism Speaks

Military families sound off for autism

  • Military Families Sound Off Military families finally got their say before Congress about the shortcomings in their autism insurance benefits, including the loss of all autism benefits when they retire. Autism Speaks helped organize the event and rally military families to the Capitol Hill briefing which resulted in an overflow room. Rep. John Larson of Connecticut, who is sponsoring the Caring for Military Kids with Autism Act, called the plight of America’s military families raising kids with autism “immoral.”
  • And They’re Off!  Autism insurance reform campaigns in the states have launched with new bills introduced in Utah and Nebraska, a bill expanding existing benefits launched in Vermont and a bill protecting coverage for Applied Behavior Analysis already voted out of the Virginia Legislature and on the desk of Governor Robert McDonnell. Autism Speaks has spearheaded autism insurance reform campaigns nationally that have resulted in 29 states representing 70 percent of the U.S. population now protected by such laws.
  • ‘Show Me’ State Shows the Facts on Autism Insurance The Missouri Department of Insurance has released an analysis of its year-old autism insurance reform law showing that the impact on premiums was 0.1 percent, a fraction of the 3 percent impact used by insurance industry lobbyists in their efforts to defeat such laws. The Missouri analysis was consistent with findings Autism Speaks has gathered from five other states showing that the implementation of autism insurance coverage has minimal impact on premiums.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

Colgate University’s Women’s Hockey

Colgate University’s Women’s Hockey supports autism research

  • Gooooooaaaaal! In collaboration with Autism Speaks U, Colgate University’s Women’s Hockey team is hosting their 2nd annual Autism Awareness Project on February 3, 1011. This project is in support of their team manager, Kati Williams, who is a local teenager on the autism spectrum. Through their various fundraising and awareness efforts they hope to have over 1,200 fans attend the game to help shine a bright light on autism.
  • T-shirt Madness Autism Speaks was introduced with a unique and innovative fundraising opportunity with the company Sevenly. Sevenly designed a custom t-shirt for Autism Speaks and used social media to spread awareness and raise funds! Learn more here and be sad that you missed your chance to get a shirt!

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

The Month in Review: Autism Speaks December 2011 Impact

January 5, 2012 1 comment

Happy New Year and welcome to 2012! December was a busy month, with lots of last minute fundraising and grant activity. This month’s “impact” post includes updates from across the organization. We hope the holidays were great for you and yours! As usual, this post is filled with top items from last month that we think made an impact for the community.

Science

Autism Speaks Science Top 10

  • Tokyo The science team kicked off the month with a trip to Tokyo, where we attended the Joint Academic Conference on Autism Spectrum Disorders, co-hosted by Autism Speaks and the Japanese National Institute of Mental Health. The meeting was a great stepping stone in building collaborative scientific relationships with Japan’s autism community.
  • Grants This month, we also announced over $13 million in grants for 47 autism research projects including identification of environmental influences and early biomarkers, the development of better autism animal models, the creation of the world’s largest whole genome autism library, studies on adult development and support, and updates on the cost of autism coupled with calculations on how specific services can reduce lifetime costs. We are especially pleased to announce our funding of the first U.S. autism prevalence study to use total population sampling methods. This study, developed in collaboration with the CDC, follows the lead of last year’s ground-breaking study in South Korea, which found an autism prevalence of 1 in 38 among schoolchildren, most of them previously undiagnosed.

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

Autism Safety Project

  • Autism Safety Project This month, we added three new sections to the Autism Safety Project portal on our website. The Safety in the Community page consists of tips and resources specifically for a variety of simple experiences and activities that take place in the community such as Interacting with Law Enforcement, Asking for Help, Playing in the Neighborhood and many more. In addition, for the Safety in the Home page, the Ohio State Medical Center, a recipient of one of our Family Services Community Grants created Safe Signals, a tool kit and video designed to promote fire and burn safety for older teens and young adults with autism. We also included a section on sexual abuse that contains information on how to talk about sexuality, how to prevent sexual abuse, warning signs of sexual abuse, and more.
  • AutismCares Through a generous donation from HP this month, AutismCares was able to give out ten Slate 2 tablets to families in need. Tablets like the Slate 2 have been found to be extremely helpful in improving communication skills of individuals with autism. We received a record 2,400 applications for these life-changing devices. Stay tuned for more technology giveaways in January!

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

Advocacy

CARA signing

  • CARA Persistence pays off! Over the past summer, Autism Speaks energized advocates across the country to urge Congress and President Obama to renew the landmark Combating Autism Act. Because of that hard work, President Obama has signed an appropriations bill approved by Congress that provides $230 million in new federal funding for autism research and services, the first of three new annual installments.
  • Speak Up! Make your voice heard! The federal government is now implementing the sweeping 2010 Affordable Care Act reforming American health care. How that law is implemented could profoundly affect insurance coverage for autism diagnoses and treatments. Learn more about the law and what you can do to protect autism benefits here.
  • Military families raising kids with autism can lose their benefits when they leave active duty. Autism Speaks has helped organize a Jan. 31 Congressional briefing on the Caring for Military Kids with Autism Act which would end that inequity. Learn more about this vital issue here.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

Blue Tie Blue Jean Ball

Blue Tie Blue Jean Ball

  • LOL On Monday December 5, 2011 Autism Speaks and New York Center for Autism (NYCA) honored iconic fashion designer Tommy Hilfiger for his commitment to increasing awareness and support of the autism community at A Funny Affair for Autism – a star-studded evening of fashion and comedy that helped raise over 1.3 million dollars for individuals with autism and their families.
  • Blue Tie Blue Jean Ball On December 1, the Los Angeles Chapter of Autism Speaks held the inaugural Blue Tie Blue Jean Ball.  In looking back at what made the event so amazing, I attribute it to four key elements: vision, focus, determination, and teamwork.  Over 700 people packed the House of Blues on the world famous Sunset Strip to hear the incomparable, beloved and ever gracious Sarah McLachlan sing some of her biggest hits.  She was introduced by autism mom and Grammy Award-winning singer Toni Braxton.  The show was hosted by comedian Sinbad, who also handled the live auction with humor and zip.

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

How does research help my child today?

November 25, 2011 3 comments


 Today’s “Got Questions?” reply comes from Rebecca Fehlig, Autism Speaks national director of field and chapter development

I still remember the day in 2009 when I was sitting in the committee hearing room of our state capitol. We were waiting for the next parent to testify in favor of our Autism Insurance Reform bill—in its second year of battle here in Missouri. Many moms and dads sat in the back with me, clutching their note cards, printed testimonials and handwritten pages. Though we were all nervous, we were eager to tell our stories to the legislators whose decision could make such a huge difference in our children’s lives.

Megan was a local volunteer, autism advocate and parent of two children, one of whom (Henry) has autism. Her hands were shaking a little, but she delivered her message in a calm and confident voice. She was confident the legislators would respond to her personal testimony. Megan explained that she was in extreme debt, had declared bankruptcy and had to sell her home—all to pay for Henry’s autism behavioral treatment. But Megan was not there to complain. She wanted to share Henry’s progress and positive outcomes. Thanks to more than 20 hours a week of early behavioral intervention, Henry had uttered his first words. She told the legislators that her financial sacrifices were well worth that precious reward. But she asked that other families not have to sell their homes and declare bankruptcy for their children to receive treatment for autism. I was not the only one wiping tears at the end of her story.

But the next individual who testified opposed our Autism Insurance Bill. He represented an insurance provider, and he used the same argument that insurance lobbyists were feeding the legislators across the country. “Although we empathize with Megan’s struggle,” he said, “the simple fact is that behavioral therapy is an experimental treatment for autism.” He said it was reckless for insurance providers to pay for experimental therapies and that despite Henry’s improvement, there was no predicting whether other children would benefit.

His words produced gasps around the room. My heart sank.

But wait, this is where the story gets good. Next, Lorri Unumb, Autism Speaks vice president for state government affairs, took the stand. She too shared the progress of her son from intensive applied behavioral analysis (ABA). But it was the next part of her testimonial that every legislator in the room heard loud and clear.

Countering the insurance industry testimony head-on, Lorri stated unequivocally, “ABA is not experimental!” And she had the published research studies to back up her statement.

It didn’t matter whether the studies were done in Missouri or another state. Each study had been vetted and published by a leading scientific journal. The evidence made clear that ABA is far from experimental, and it demonstrated the importance of early intervention in producing the most successful outcomes.

The Missouri House of Representatives voted our bill out of committee that day. It went on to our governor’s desk to be signed into law—all because we had the scientific research to back up our efforts.

Never before had the importance of funding research become so clear to me!

Currently Autism Speaks is funding additional studies that can provide a firm foundation for our advocating that insurers cover additional types of behavioral therapy–such as social skills training, infant-toddler interventions and cognitive behavioral therapies focused on social and communication skills.

And that’s crucial because the downside to our story was that the Missouri bill mandated coverage for some but not all autism treatments. Many more treatment options need to be further investigated to ensure they are safe and produce tangible benefits for those who struggle with autism.

The great news is that Autism Speaks just funded $1.8 million in treatment grants that will further our understanding of the most promising new interventions—not only for children but for all those on the spectrum—from early intervention therapies in underserved communities to job interview training for adults.

We look to these studies to give us the ammunition we’ll need the next time we are sitting in front of a room full of government decision makers. And they would not be possible without your support at our Walks and other fundraisers.

When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.

Autism Speaks continues to work for state-mandated medical coverage for autism interventions. To date, its advocacy efforts have helped secure autism insurance reform laws in 29 states. To learn more about Autism Speaks advocacy efforts, please visit http://www.autismvotes.org.

For more news and perspective, please visit the Autism Speaks science page.

The Month in Review: Autism Speaks October 2011 Impact

November 3, 2011 5 comments

Last month we tried an experiment… we attempted to recap the most important, relevant things going on around Autism Speaks to give you some insight into the breadth and depth of our organization; and to solicit your feedback. Thank you for your incredible responses and questions!

One of the more common questions we get (similar to the one that Kristine on Facebook posted) is, “What can Autism Speaks do to help my family today?” It’s a great question!  We understand that families are struggling and are looking for help and information. Using an “evidence-based science” approach, we seek to deliver useful information, tools, and resources for families that they can immediately use, such as the 100 day and transition kits. Programs such as Advancing Futures for Adults with Autism provide resources across the lifespan. Not only do we provide a wide collection of tools, we also staff the Autism Response Team which is available to answer your questions via email, phone and online chat! They can be reached via email at familyservices@autismspeaks.org or 1-888-AUTISM2. Kristine, that’s how we help families today, while we continue to increase awareness about autism, advocate for more funding for research and services, and fund innovative research projects that are developing improved treatments and services for people with autism.

If you know of other things that might be helpful to another family, please SHARE them by leaving a comment! We want to know what you think is important.

Science

Illustration by Gracia Lam

Illustration by Gracia Lam

  • We’ve got an MD on staff!  This month, we hired Joe Horrigan, MD to head up Autism Speaks’ medical research.  His charge is to spearhead the development of new medicines and other treatments that can help people with autism communicate and learn better and address some of the medical conditions associated with autism, such as GI and sleep problems.  Welcome, Dr. Horrigan!  Look for him on our Science blog.
  • Leading the Way Autism Speaks is leading the way in developing an enhanced Autism Tissue Bank that will accelerate the discovery of the causes and new treatments for autism.   Autism Speaks Autism Tissue Program (ATP) featured prominently in a feature story in the prestigious science journal, Nature, on the tissue bank shortage and how a small handful of organizations such as Autism Speaks are working to fill the void and speed research that can help individuals and families struggling with neurodevelopmental disorders such as autism.
  • World’s Largest Genome Library will be created by Autism Speaks and the Beijing Genome Institute.  Autism Speaks and  announced an agreement to create the world’s largest library of sequenced genomes from persons with autism spectrum disorders (ASDs). Multiple stories have appeared in the U.S. and China. The journal Nature interviewed Andy Shih on the agreement, as did Genome Web Clinical Sequencing.
  • Got Hours? Geri Dawson held her first “Office Hours with the Chief Science Officer” which featured guest host and renowned geneticist Steve Scherer, PhD, who addressed the question: What do the new findings in genetics mean for my family?  Dr. Dawson will be holding monthly office hours and the next one will be on the topic of new approaches to early intervention, scheduled for the first week of December Read the transcript.

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

  • Employment October is National Disability Employment Awareness Month. We highlighted the Jay Nolan Community Services Employment Tool Kit that was funded by one of our Family Services Community Grants. Other employment-related activities included question of the week on Facebook and live chats with:
  • New Toolkit Alert New Tool Kit Alert – in an effort to provide information and encouragement to all people with individuals with autism in their lives, Autism Speaks has several new Family Support Tool Kits. The purpose of each kit is to help teach family members and friends more about autism and provide resources and supports to each group. New kits include:
    • Parents
    • Siblings
    • Grandparents
    • Friends

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

Advocacy

Signing in NY

Signing in NY

  • New York Autism Speaks Co-founders Suzanne and Bob Wright stood alongside Gov. Andrew Cuomo as he signed legislation making New York the 29th state to enact an autism insurance reform law.  The New York law is one of the strongest in the nation, setting no caps on age or visits for behavioral treatments. Governor Cuomo credited Autism Speaks for its leadership role in winning enactment of the legislation.
  • California We (all of us) did it! A major campaign was launched to ask Governor Brown to sign SB.946, the autism insurance reform bill, into law. Because of California’s significance as the most populous state, we asked advocates in the other 49 states to participate by recruiting their friends and family in California to participate. Thousands of emails were sent into Governor Brown and over 1,000 people left comments on his Facebook page as well. Every possible method to get through to him was deployed, including a successful political cartoon campaign. The cartoon was printed as 750 posters and distributed at the Oct. 9 Sacramento Walk, the day the bill was signed by Governor Brown making California the 28th state to enact reform.
  • Michigan Our attention has now turned to Michigan where we are urging the state’s legislative leadership to move a pair of autism insurance reform bills before the year’s end. We need your help! If you are in Michigan, or know someone who is please text “AVotes” to 30644 and we’ll alert you when we need your help!
  • Autism Law Summit The 6th Annual Autism Law Summit attracted 100 activists from 33 states to Salt Lake City. The event highlights efforts to obtain insurance benefits for necessary autism treatments through legislation, litigation, and encouraging employers with self-funded plans to include the benefit for their employees. During the summit, we celebrated Arkansas, California, Rhode Island, Virginia and West Virginia for enacting reform bills during 2011.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

60 Minutes Apps for Autism

60 Minutes Apps for Autism: image from CBS

  • Apps for Autism The producers of 60 Minutes consulted extensively with Chief Science Officer Geri Dawson and VP of Scientific Affairs Andy Shih in preparing a special segment on autism applications for communication, which aired Sunday, October 23rd. The full show can be found on the CBS News website.
  • Parents Magazine The October 2011 issue of Parent Magazine featured an interview with Autism Speaks Chief Science Officer Geri Dawson in an article entitled “Understanding Autism.” The piece encouraged parents to pursue an early diagnosis of autism in their children and highlighted the beneficial outcomes that early intervention and treatment can bring to a child diagnosed with autism.  To read an excerpt from the article, click here: http://www.parents.com/toddlers-preschoolers/health/autism/autism-diagnosis/
  • Extreme Makeover: Home Edition On Friday, October 28, ABC “Extreme Makeover: Home Edition” aired an episode featuring the McPhails, an Oregon family with two sons affected by autism. In addition to tackling home improvements, the EMHE team worked with Autism Speaks to rally the local community to raise autism awareness in honor of the family. To watch the episode click here: http://abc.go.com/watch/extreme-makeover-home-edition/SH559052/VD55150625/mcphail-family-part-2

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

Promises Kept – NJ Congressmen Lead the Way on CARA

June 8, 2011 3 comments

Christine Bakter is currently the Statewide Chapter Advocacy Chair for Autism Speaks in New Jersey, effectively advocating for autism research and services at the federal level, as well as leading the grassroots effort that resulted in New Jersey becoming the 15th state to enact autism insurance reform in 2009.  She previously served as the Chairperson for the Central New Jersey Walk Now for Autism Speaks and has been an active member of the Central New Jersey community development committee since 2002. Christine has two sons with autism spectrum disorders.

Chris Smith, Suzanne Wright, Bob Wright, Christine Bakter

Since its inception, I have enthusiastically participated in the Autism Speaks advocacy initiative, Autism Votes. My work began with a number of New Jersey federal legislators to garner support for the Combating Autism Act, initially introduced in the Senate in 2005 by former Senator Chris Dodd (CT) and former Senator Rick Santorum (PA).

Armed with talking points for the Combating Autism Act (CAA), New Jersey Autism Speaks advocates entered the offices of newly appointed Senator Robert Menendez in the spring of 2006, unsure of what to expect. The only constant in politics is change – and our delegation was dealing with an unknown. Senator Menendez, the former Congressman of New Jersey’s 13th District, had been appointed in late 2005 to serve out the remainder of outgoing Senator turned Governor-elect Jon Corzine’s term, which was due to expire at the end of the year. We were successful in securing the support for the CAA from both New Jersey Senators and several Congressmen in 2005 right after its introduction, but none of us attending the meeting that day hailed from the 13th district. As such, we weren’t entirely sure where the new Senator stood on autism or how strong his support would be.

We did not need to worry for very long. His agreement to cosponsor the CAA was immediately given along with a promise to do more when the timing proved better.

Senator Menendez issued this statement to our group via staff.

“Senator Menendez understands that autism is a pressing health concern for New Jersey families. As a new appointee, he is “Senator Number 100″ right now there are limits to what he can do until he wins this Senate seat of his own accord in November’s election. But I want to assure you that he intends to make this a signature issue. He understands how important this is to families like yours across our state.”

Thinking back to this statement, made by the healthcare legislative aide who remains on his staff to this day as one of my primary points of contact, makes me smile. I admit that I’m somewhat of a skeptic, so when someone in the political arena keeps a promise, I’m impressed, exited, and encouraged. This could have been some run-of-the-mill campaign promise, and it became obvious rather quickly that it was far from that when I was invited back to participate in a series of roundtable discussions hosted by Senator Menendez in 2008. The purpose of that meeting was to get a better sense of what current federal legislation was missing – to essentially fill in the gaps in the federal response to the autism epidemic, which has hit New Jersey especially hard. The Helping HANDS for Autism Act of 2008 was the legislation resulting from those roundtable discussions. The next year in the summer of 2009, Senator Menendez played a critical role in ensuring that coverage for behavior-based autism therapies was included in the essential benefits package of the hotly contested healthcare reform bill.

So it’s no surprise to me that the leadership baton for the Combating Autism Reauthorization Act (CARA) has been passed to Senator Menendez to reauthorize this historic legislation and allow the foundation for autism research to continue to grow.

Additionally, my Congressman, Chris Smith, introduced the companion CARA bill in the House of Representatives in conjunction with the Senate version introduced by Senator Menendez. Congressman Smith (R-NJ) continues to be stalwart advocate for the autism community in the House of Representatives, first advocating for individuals with autism as a freshman Congressman in 1982. Along with Congressman Mike Doyle (D-PA), Rep. Smith formed the Coalition for Autism Research and Education in 2001, in direct response to a suspected autism cluster in Brick Township that was brought to his attention by Bobbie and Bill Gallagher, constituents with two affected children. When my husband and I first walked into Congressman Smith’s Washington office in 2004, we understood immediately that we were in a unique position – this was a legislator who didn’t need to be educated or swayed with respect to our legislative agenda; he was the primary sponsor of many of the bills on our action lists. Rep. Smith was already acting in response to the concerns of our community and we were in the enviable position of having a meeting to just convey gratitude for his steadfast support. Congressman Smith’s staff impressed me with their detailed knowledge of autism as they asked thoughtful, intelligent questions about our two affected sons and their educational and therapeutic needs. Upon learning that our younger son, Ben, had experienced amazing gains due in large part to his participation in the Autism Speaks-funded “High Risk Infant Siblings Study” at Kennedy Krieger in Baltimore, he immediately asked for more information, bandying about an idea for a piece of legislation to further fund this important early detection research. Ultimately, the goals Congressman Smith wanted to address with his idea for a bill were sufficiently covered in the original Combating Autism Act, which he cosponsored with Congressman Doyle in 2006. Congressman Smith’s long-term commitment to the autism community, spurned directly from the concerns his constituents bring to him, has translated into legislation that has impacted the rest of the nation in a meaningful way. I remain grateful to have a Congressman that not only listens to my concerns, but continually seeks new ways to act on them legislatively.

Thank you, Senator Menendez and Congressman Smith, for your continued service to our loved with autism not only here in New Jersey but across the nation by introducing S. 1094/H.R. 2005 – The Combating Autism Reauthorization Act – in both Houses of Congress. We look forward to a continued partnership to advance not only our understanding of autism through research, but to also provide the desperately needed services that will allow our children to live out the full course of their lives with dignity and purpose.

This legislation must be passed by Congress and signed by President Obama by September 30th, 2011. If you would like to get involved to make sure that happens, please visit www.autismvotes.org/action-cara. Autism Votes makes it easy to participate. Autism Speaks – It’s time for Congress to listen.

Rebecca Shaffer Stelzner, Senator Menendez, and Christine Bakter

Post Sentencing of Reginald “Neli” Latson

June 8, 2011 29 comments

Teresa Champion is an attorney admitted to the bar in Kentucky and Washington State. She has two children; Sydney and James, who has a diagnosis of autism.  She is a long time civic and community activist, who works with the Fairfax Autism Network (FAN) and the Virginia Ability Alliance (VAA). Champion is a member of the Council of Parent Attorneys and Advocates (COPAA).  Currently, Teresa is volunteering for the Virginia Autism Project (VAP) as the Northern Virginia Regional Director.

The preliminary blog, ‘The Latson Case in Virginia: A Danger Signal That We Can’t Ignore’ can be read here.

Reginald “Neli” Latson’s sentencing hearing took place in Stafford County, Virginia Circuit Court on Tuesday May 31st.  In March, Neli was found guilty of charges associated with an assault of a police officer and the jury recommended a sentence of 10 ½ years. In Virginia, the jury recommends a sentence and the judge imposes the sentence at a later date. Virginia law has no provision for parole. Neli will serve his entire sentence.

The courtroom was packed with people who came to show support for Neli and for a sentence that would both protect the community while providing desperately needed services for Neli. There were no seats to be had and a number of people stood throughout the long afternoon. A number of members of the Stafford community who know Neli were present, including the owner of the car wash where Neli worked through his vocational program, as well as family friends and neighbors. Also present were many parents of children with autism, representatives from the Arc of Northern Virginia, the Autism Society of Northern Virginia, and Autism Speaks. There were also several adults with autism in the courtroom who had traveled to Stafford to demonstrate their support.

Five witnesses testified for the defense: two experts who had evaluated Neli — a psychiatrist and a pediatric neuropsychologist who both specialize in autism spectrum disorders; the vice president of the residential school that is part of the proposed treatment plan; and two individuals from the community who had very close relationships with Neli: a school social worker who worked with him between 9th and 12thgrade, and Neli’s middle school wrestling coach. They all gave powerful and informative testimony. The testimony established that Neli has a diagnosis of autism and intellectual disability and that these conditions explain why he behaved as he did in the encounter with the police officer. The testimony further established that while Neli has significant challenges, and although he was deprived of early intervention for autism because his disability was misdiagnosed as ADHD until he was in 8th grade, he also is an exceptionally good candidate for intervention and has shown remarkable motivation and progress when placed in the right environment. The experts proposed a detailed and specific plan that would provide Neli with intensive intervention in a safe, secure and closely supervised residential setting for an extended period of time.

The prosecution did not offer any testimony from witnesses and submitted only limited evidence aimed at showing that Neli had behaved badly in the past. One item of prosecution evidence was Neli’s special education file. Its thickness, the prosecutor argued, was proof that Neli had had all the services he needed and to no avail and that therefore this case was not about autism but simply about “a violent man” who should be incarcerated. The prosecutor stressed that this was “a case, not a cause” and that it was inappropriate for the defense to attempt to “medicalize” criminal behavior.”

One of the many emotional moments of the afternoon came at the end of the day when the judge, just prior to announcing his decision, asked Neli whether he wished to say anything. Neli stood and, with permission of the judge, turned to face the officer. In a voice barely audible he apologized. He spoke several sentences that were difficult to hear though their meaning was clear.

The judge found that the plan proposed by the defense experts – hospitalization for several months at a Virginia psychiatric facility followed by intensive services at the residential school – was clear, strong and realistic, but he declined to implement it immediately. He set aside the jury’s sentence of more than 10 years and imposed a two year period of incarceration, with the remaining eight years “suspended,” meaning they can be imposed if Neli does not cooperate with the terms of his probation (i.e. – participation in the treatment plan). Of the two years imposed, Neli has already served one year, and he will have about another 8 ½ months to serve when his credit for good behavior is factored in.

All considered, though we certainly would have preferred to see Neli transferred to the hospital after the hearing, this is an extraordinary outcome given the traditional sanctity of a jury verdict in Virginia. The defense team, which includes lawyers and experts who donated untold hours and resources on Neli’s behalf, will make every effort to use the next 8 ½ months constructively to help Neli make progress even before he leaves the jail for appropriate care.

The witnesses called by Neli’s defense team expressed compassion for the injured officer.  The witnesses and defense counsel made it clear that what happened to the officer that day was not the officer’s fault.  Everybody lost that day last May when the confrontation occurred.  As this population with an ASD ages and those individuals, like Neli, who didn’t have access to adequate treatment and therapy become adults, we must explain autism to the community at large – just like we had to do for our children’s teachers, caregivers, and family members when they were younger. We worked for acceptance and training everywhere they went.

We have to be one step ahead of our adults with an ASD in the community.  We must talk honestly about the hallmarks of someone with an ASD and also educate our young adults on how to interact with someone in law enforcement and public safety. We have to show our disabled adults how to be interviewed and possibly arrested by the police.  The legal system is not equipped to deal with individuals who can’t respond appropriately and/or control their response because of a disability. We have a lot of work to do to educate and train the judicial and legal systems and the community at large.

Operation: Research Autism

This is a guest post by Shelley Hendrix, the Director of State Based Advocacy at Autism Speaks.

The military has a weapon in the war on autism that few people know about even in our own community – a Congressionally Directed Medical Research Program specifically focused on research of previously overlooked medical issues, including autism spectrum disorder.

As a taxpayer, you contribute your two cents to this program – literally – every year.

The Department of Defense Autism Research Program (ARP) was established in 2007 after parents lobbied Congress for years. Lucky enough to be selected as a stakeholder, I participated in shaping the vision and mission of the program in March 2007.The program has a two-tiered review process with proposal evaluation by both a Scientific Review Panel (SRP), which reviews scientific method and validity,and Integration Panel (IP), which primarily focuses on programmatic impact to the community and issues final recommendations for funding projects. My service on the IP has allowed me to be intrinsically involved in funding scientific proposals for projects ranging from those designed to gather preliminary data that may lead to new breakthroughs one day up to complex clinical trials for new treatments or therapy modalities.

Since its inception, ASDRP has funded 66 projects investing $31.9 million in autism research.

What makes this program unique is my ability to contribute my two cents in other ways.  In this program, consumers participate throughout the entire process – shaping the program and reviewing the scientific proposals with an equal, respected voice regarding innovation and impact. More importantly to me, consumers fully participate in distribution of funds – advocating expenditure in areas the community wants to be researched – now.  Furthermore, if the SRP that a member of the IP believes has promise of significant impact, an IP member can rescue and champion it.

While science keeps plodding along trying to determine the etiology of autism, many parents simply want to find basic answers the quality of our children’s lives now by addressing their behavioral and physical health gastrointestinal, sleep and seizure issues can change the whole family’s life.

Comprised of scientists, clinicians and consumers from a variety of backgrounds, the integration panel has a unique opportunity for candid, civil conversation about the research direction of this program. Everyone has learned to appreciate different perspectives.   For example, robotic technology is cool. But most parents don’t want precious research dollars expended on robots to work with our children – at least not while there are still humans around.

The main thing I’ve learned on this panel is that the march of scientific progress not only requires significant money – it also takes a lot of time.

On April 7, 2000, I attended a meeting at the National Institutes of Health with around 250 parents – most had very young children.  Fifteen minutes into the presentation, a brave mom stood asking when we could expect some answers. The speaker proudly announced from the podium that we could expect some good answers in 25-30 years.

All 250 of us got up and walked out of the meeting. I walked out because my son Liam was four at the time.  The fact that they would not have answers for him until he was 34 seemed ridiculous. They didn’t need to waste time telling me what autism was. They needed to get back to work.

Eleven years later, after serving on the DOD panel, now I understand what she meant.  Doesn’t make it easier but now I know firsthand the grant funding process takes years. The actual research takes years after that and then potentially waits even longer for acceptance for publication.

ARP Funding Timeline – Fiscal Year 2010

Fall of 2009 – $7.1 Million allocated to the ARP by United States Congress.

December, 2009 – IP meets to review vision and mission of program, research area focus and funding mechanisms.

February, 2010 – Program announcements and requests for proposals posted.

Late April, 2010 – Pre-proposals received from investigators seeking funding.

Late May, 2010 – Pre-proposals screened by IP determining invitees for full proposal submission.

June, 2010 – Invitations for full grant submission mailed.

July, 2010 – Full grant proposals received, prepared by program staff for review by SRP.

September, 2010 – SRP meets to review grant applications.

Late October, 2010 – Program staff organizes and prepares SRP reviews for IP

November 30, 2010 – IP approves $7.1 Million in funding on accepted grant proposals.

January, 2011 – Grant recipients are notified of award and must advise program staff if they accept funding or another source was found.  If recipients turn down grants, alternates are contacted in rank order for funding opportunities so every dollar is effectively spent.

February, 2011 – All money is invested. Grant recipients must then demonstrate that approval at their institutional levels to work with human subjects or on human tissues.

September, 2011 – Grantees are anticipated to receive their first funding – funding that was first allocated in 2009.

September 20** -  **Wait two, three or four years for the research projects to conclude and another couple for researchers to publish their findings in a paper and it’s easy to see why the process begun on that cold wintery day in Annapolis in December, 2009 might not finish until December 2015, or beyond.

As frustrating as this glacial pace is to parents watching their children suffer day in and day out, just because you cannot see it does not mean research isn’t being done.  It does not mean that researchers are not working every day to validate treatments and therapies that have come from your complaints or ideas you developed in your own homes.

I am very proud of the science that the ARP has funded.  We have stayed true to areas of research initial stakeholders expressed interest in 76% of the time.  Only 12% of funding approved is for scientific proposals replicated in other research programs and the remaining 12% of the funded proposals are highlynovel ideas that are not currently funded by governmental, private or non-profit agencies.

The CDMRP has a number of other research programs in it that have not only provided the world with cutting edge research but have grown exponentially since their inception. For example, Congress appropriates over $100 Million annually to the Breast Cancer Research program.

Congress appropriated another $6.4 Million to the ARP in April 2011.  As a community, we could grow that figure for this innovative program if we just act.  Learn more about the ARP and register at Autism Votes so you can be first to contact your Congressman and Senator to let them know we want their support to increase funding next year.

What’s All the “Brewer-Ha-Ha” about Arizona?

April 28, 2011 17 comments

It’s on the other side of a country three time zones away from you.  You have never been there. You don’t know anyone who lives there.  You have enough on your plate with your own family and your child’s needs.

Why should you care about what is happening in the state of Arizona?

Arizona became the fourth state to enact autism insurance reform legislation in the spring of 2008. In 2011, their legislature became the first state to pass a bill that would effectively reverse the progress made three years ago. That legislation now sits on Governor Brewer’s desk awaiting its fate – to become law or to get her veto stamp.

On its face, this new legislation appears harmless and expansive of our free enterprise, capitalist society.  Let the interstate commerce trading of insurance policies begin under the premise of increased competition in the market to allow for reduced health care costs!  But at what price?  If SB 1593 is signed into law by Governor Jan Brewer, it will allow companies to shop outside the great state of Arizona – perhaps in states where autism insurance reform has not passed – potentially leaving families alone holding the bag once again for their exorbitant children’s health care costs which can quickly and easily be upwards of $75,000 each year.

Just watch the evening news any given week and you can see that Arizona politics these days are writhe with state’s rights and state pride.  “Don’t tell us what to do. We are Arizona.”  That said, how is it possible that Arizona legislators would then choose to hand over regulatory authority of healthcare coverage for their constituency to say…Rhode Island?  If SB 1593 is signed into law, policies will be purchased across state lines, or even across the country. Citizens will have no recourse – subject to the whims of the other state’s legislature, regulation committees and judicial system.  They will have no representation at all.

Last week, Autism Speaks launched an aggressive campaign asking Governor Brewer to veto the bill.  Members of our Government Relations team met with her office.  We purchased television air time for commercials. We sent eblasts to rally the Arizona community.

This week we are asking people all across America to pitch in with the heavy lifting.  We need it. 

There is a company generating robocalls to call for Governor Brewer’s signature into law.  And their ever efficient robodialer is delivering calls to Governor Brewer’s office at a higher rate than our community – a community exhausted from fighting our fight at every turn.

Help us prove that our grassroots advocates are better than robots.

This is simply a domino that we cannot afford to let fall.  A victory for the opposition would bolster  resolve to introduce similar legislation in every state where reform initiatives have passed.

Who cares about Arizona politics? You should. Your insurance coverage, or your hope of obtaining it, is now in great jeopardy. As a community we must stand strong. We must come to Arizona’s aid.  We must politely ask Governor Brewer to do the right thing – to veto SB 1593 and preserve the accomplishments of Steven’s Law.

Regardless of what state you live in, please call Governor Brewer’s office at 602.542.4331. Press #4 for a live person. Say “I am calling to ask Governor Brewer to veto SB 1593.” Tell your friends. Post it on your Facebook. Send it out through Twitter.  Ask for accountability from your friends and family. Ask them to demonstrate publically that they have completed the mission by writing “DONE” below your post.

Nothing in life is ever easy. To preserve progress, we must be ever vigilant.

To learn more about what is happening in Arizona or to learn how you can become more involved in federal and state initiatives, please visit www.autismvotes.org and sign up today!

Halfway There: A Personal Reflection on Autism Insurance Reform

April 20, 2011 37 comments

This is a guest post by Lorri Unumb, the Senior Policy Advisor and Counsel with Autism Speaks.  She teaches a class called “Autism and the Law” at George Washington University Law School and, along with her husband Dan, is the author of a newly-published book by the same name.

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Today, as I sit at my kitchen table reading news accounts of the 25th state autism insurance bill being signed into law by the governor of West Virginia, I get emotional.  Six years ago this summer, I sat down at this same kitchen table to write my own bill.  The mother of a then-4-year-old son with autism, I was frustrated that health insurance wouldn’t pay for the treatments my son’s doctor recommended.  I was tired of reading EOBs that deemed my son’s treatment “experimental.”  Or “educational.”  Or “non-restorative.” And mostly, I was tired of sitting in support groups with parents who, without coverage from their insurance, could not provide treatment to their children at all.

I wrote a very simple bill – one page of common sense — that said not much more than “health insurance must cover what a doctor prescribes to treat autism.”  As a lawyer and law professor at the time, I could not think of any reason why health insurance should not cover our children’s health condition.

I sent my one-page bill to a couple of legislators in South Carolina and asked them to file it in the fall of 2005. The insurers came out swinging against it, as did the Chamber of Commerce and the National Federation of Independent Businesses.   But I had assembled a strong group of committed South Carolina families – the “Ryan’s Law Grassroots Gang” – who had compelling stories to tell and were willing to share them.

For two years we fought and negotiated and persevered.  We contacted legislators one by one and asked for 15 minutes to explain our situation.  We had no lobbyist, no money, and no organizational backing.  Our opponents had multiple lobbyists, deep pockets, and their own parking spaces at the state capitol.

In the end, the legislators in South Carolina did the right thing.  They passed our little autism insurance bill – twice.  They passed it first in the usual course of proceedings and a second time – unanimously – on the last day of the session – June 7, 2007 — after the governor of South Carolina vetoed it.

The law became known as Ryan’s Law, after my son.

In the minutes after Ryan’s Law passed, I stood in the lobby of the state house exchanging hugs, kisses, and tears with families, legislators, and staffers who had become friends in this journey.  When the hugging was done, my two best autism pals and I went to a Mexican restaurant, toasted each other with margaritas, and drove home.  The celebration was over, and we went back to our real lives.

At the time, I had no idea that our effort in South Carolina would attract national attention and would lead to hundreds of emails from families who wanted to pass the same law in their states.  In spite of the standing ovation from our House of Representatives at the moment of final passage, notwithstanding the legislators who shook my hand and thanked me for giving them the opportunity to support the “most important bill we’ve ever passed” – I had no appreciation for the significance of the occasion.

Ryan is now 10.  In the years since Ryan’s Law passed, I have had the good fortune to help families across the country advocate for similar autism insurance bills.  In 2008, I was invited to join Autism Speaks and, because of their tremendous support, have been able, along with the other dedicated members of the Government Relations team, to develop the expertise needed to take on opponents of autism insurance reform in almost every state across America.

Last year I flew approximately 150,000 miles as part of Autism Speaks’ effort to assist local autism advocates in their efforts.  As I reflect on my travels and the 50+ times I have testified in support of autism insurance legislation, what stands out most are the phenomenal families who have stepped out of their comfort zones and engaged in the political process.  What stands out are their stories:

  • The mom who compared the journeys of her two young children – one who had cancer and could get the treatment his doctor recommended, and the other who had autism and could not.
  • The dad who was forced into bankruptcy and lost his home because he wanted to provide his son needed therapy.
  • The teenager with autism who had overcome his deficits enough to testify beautifully before a legislative committee and thank his parents for the sacrifices they made so that he could receive therapy.
  • The parents who had two children with autism but had to choose which one would get therapy because, paying out-of-pocket, they could afford only one.

I cherish memories of the families who never believed their voice could make a difference but now have seen the law change because of their efforts.  And I applaud the legislators who have championed our cause only because they knew it was the right thing to do.

At a time when many criticize our government and political system, I am encouraged by the success of our grassroots activism.  To me, the autism insurance reform movement is a shining example of democracy at its finest.

Although we have now reached the halfway point, we have a long way to go.  Indeed, we have more than “halfway” remaining, because, even in the 25 states that have passed autism insurance laws, many families are still not able to access coverage.  Insurers put up roadblocks – roadblocks that will require significant enforcement efforts and legal action to overcome.  Many families are insured by self-funded companies that are not subject to their state’s autism insurance laws.  (We were one of those families by the way, and, as a result, Ryan was not covered by Ryan’s Law when it passed!)

Nevertheless, today I pause for a moment to celebrate with the many families I’ve been privileged to meet and with my Autism Speaks colleagues – both my 6 Government Relations colleagues and the many others who raise funds to make our work possible and raise awareness to make our work easier.  As I reflect on 25 journeys in 25 states that now require insurance to cover diagnosis and treatment of autism, I am reminded of the line I wrote to the Ryan’s Law Grassroots Gang on the day the South Carolina bill became law:  “Although I obviously wish my son Ryan were not struggling with autism, I am today very grateful and honored to be part of this autism community.”


West Virginia Turns 25

April 1, 2011 7 comments

Earlene Sharp Anglin is a part-time geography instructor at Marshall University in Huntington, W.V. who also volunteers with various local autism organizations and mentors parents of newly diagnosed children. Having a 9 year old son with autism, she understands the difficulty of affording the medically necessary treatments required of this diagnosis. As Autism Speaks’ West Virginia State Advocacy Chair, Earlene played a key role ensuring passage of House Bill 2693, requiring insurance companies to cover the treatment of autism.

Earlene Sharp Anglin, Grayson Anglin, Senator Evan Jenkins

 

On April 1, 2011 West Virginia made history becoming the 25th state in the nation to enact autism insurance legislation. Being a key advocate throughout the legislative process allowed me to witness first-hand the dynamics which would come together and ultimately make this law a realization for West Virginia families.
The very fact that families have to fight for insurance coverage is maddening.

It was difficult for many of our families to get past this but you must remove anger from the equation in order to be productive. One key element of success in West Virginia was the formation of a cohesive, core group of advocates both in the Capitol and throughout every corner of the state. Consisting of parents, providers, and a diagnostician, this group of volunteers vowed to have “one voice” prior to the session’s commencement and to carry this legislation to a successful outcome.

We never took our eyes off the goal – to end autism insurance discrimination for our children.
Decisions were made through a series of meetings and conference calls – sometimes late at night or early in the morning. Daily updates were communicated to the core group of advocates all day long – thank goodness for cell phones, email, and texting. The Autism Votes Advocacy Program and social media blended together to update and mobilize other interested parties throughout the state.

Positive persistence was a constant for all involved.

Another crucial element of our success was “finding our champion” ~ someone within the legislature to herald our cause. When you find yours, developing an open, honest and respectable relationship with these key legislators is vital. In most states, including West Virginia, there are legislators whose lives have been affected by autism. However, our champion in the West Virginia State Senate, Senator Evan Jenkins, is not directly affected by autism. Nonetheless, he proved to be a credible, respected, and admired pillar of strength and determination for those in the autism community. He escorted HB 2693 through the Senate with a calm, steady hand and was remarkable in his ability to effectively communicate the historical significance of this bill for countless West Virginia families. Equally as important, he kept an open line of communication with key advocates providing status updates and invaluable political insight. His dedication to our cause was unwavering. I am proud to be his constituent.

As the autism insurance reform legislation train rolls on, I would urge future advocates in other states who climb aboard to take some time and get to know as many of your states’ representatives as possible – personally. Your strongest supporters may not always be the most obvious. It is important to make the effort to find a true champion, or two, within your state who is willing to catapult autism into the spotlight and then guide you through the abstruse process.

Finally, Autism Speaks through their Autism Votes program afforded West Virginia families professional testimony, guidance, and advocate expertise from a national perspective. The formidable work of the Government Relations/Advocacy Teams helped pave the way for a successful outcome. All this time I thought money raised at Autism Speaks went only for medical research and awareness projects, but I learned how invaluable an investment in their Government Relations department can be. Members of the Government Relations department came to West Virginia to testify and to share the knowledge and experience of having been involved in the legislative process in numerous other states. Their advocacy website proved to be an invaluable tool and they answered our calls and emails, day or night. West Virginia families did not have to pay for any of this. This was a great service to the autism community as a whole in our state.

Unified advocates, unwavering champions, and unrivaled experience are without question necessary requirements for successful passage of autism insurance legislation. Had any of these three elements been missing from the equation here, the outcome could have very well been quite different.

Ultimately, HB 2693 passed both the House and Senate unanimously and Governor Earl Ray Tomblin signed the bill into a law which will go into effect on July 1, 2011. This “World Autism Awareness Day”, and indeed all during Autism Awareness Month, West Virginian’s should embrace this moment and celebrate our legislators’ achievements.

 

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