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Archive for July, 2010

The 20th Anniversary of the Americans with Disabilities Act: A time to Celebrate and to Review our Commitment

July 27, 2010 1 comment

This is a guest post by Steven Beck, Vice President of the Down Syndrome Society of Northern Virginia and father of a 10-year-old daughter with Down syndrome.

My name is Steve Beck and I am, most importantly, the father of two beautiful 10, and 13-year-old daughters and husband to Catherine.  My 10-year-old daughter has Down syndrome. One result of my younger daughter having Down syndrome is that I have become increasing involved in volunteer work at both the local and national levels. Currently, I am Vice President of the Down Syndrome Association of Northern Virginia and a Board Member of the National Down Syndrome Society.

As we spend time this week celebrating the 20th anniversary of the Americans with Disabilities Act we need to also re-commit ourselves to moving forward. By prohibiting discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications, the ADA has provided people with disabilities access to all parts of our community both socially and economically. Guaranteeing access is one step, but providing the tools and supports needed to fully engage that opportunity is a different issue. One of the primary tools needed for all Americans and their families is the opportunity to plan, save, and invest money that can be used to pay for critical needs such as education, healthcare, and retirement.

Over the past four years I have been working with group of national organizations, including Autism Speaks, to pass the Achieving a Better Life Experience or ABLE Act of 2009.  While government systems such as Medicaid, SSI, and SSDI provide a wide variety of critical supports for our community they simply cannot cover the full array of needs. In addition, many of the rules that govern them drastically limit individuals and their family’s ability to plan, save and accumulate assets to help fill these gaps. As a result, people are forced into poverty just in order to maintain access to these government benefits.

The ABLE Act would establish a savings instrument similar to ones that all other Americans have access to through 529 College Accounts, Health Savings Accounts, Individual Retirement Accounts, and 401Ks.  Like these accounts, ABLE Accounts could be set up and managed with little or no cost. The money can be controlled by the individual, their parents, a guardian, or third-party based on decisions made by the individual and their family. There is a very broad array of qualified expenses the money can be used for including healthcare, transportation, education, housing, community based support services, employment training and support and other life necessities. The money in the accounts grows tax-free and can be distributed tax-free as long as it is spent for a qualified expense. Most importantly, the assets held in the accounts cannot be used to disqualify individuals from critical means tested programs such as Medicaid, SSI and SSDI.

Now is the time to provide individuals with disabilities the same types of financial tools that all other Americans use to save for their future needs and to pay for critical parts of everyday community living. The ADA was passed 10 years before my daughter was born and I was still in college. I started working on the ABLE Act when she was eight, and she will be 11 in November. We cannot afford to wait much longer to start saving for her future and neither can millions of other Americans.  I want and demand that she have the same opportunities to attend college, get a job of her choosing, and live independently, just like her older sister.

The ABLE Act (H.R. 1205) has 190 co-sponsors in the House and (S. 493) has 24 Senate co-sponsors as of July 24, and well over 40 national organizations supporting its passage.  Please, visit www.autismvotes.org/able to contact your members of Congress and ask them to pass this important bill into law this year.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org

More Information on Research and Clinical Trials

July 26, 2010 2 comments

This is a post by Autism Speaks’ Assistant Director of Science Communication and Special Projects Leanne Chukoskie, Ph.D.

On Friday, a short post with a link to a clinical trial led by Curemark was highlighted in e-Speaks and on Autism Speaks’ Facebook page.  The post generated a many questions and comments, some of which could be addressed with more information about clinical trials in general.

Clinical trials are research tools for studying the health and well-being of people.  Clinical trials are not always focused on treatment, but may include studies of better methods for diagnosis, screening or improving quality of life.  A description of types of clinical trials is available at an informative website provided by the National Institutes of Health in the FAQ.

In addition to the different types of trials conducted, any clinical trial involving a new drug enters a phased series of tests to assess the safety and efficacy of the drug for a particular population.  A Phase I clinical trial is small and establishes safety and appropriate dosage. In Phase II, the trial is expanded to include more subjects so a better estimate of effectiveness and safety can be established.  Phase III trials can be conducted after preliminary evidence for the effectiveness and safety of the drug has been favorable. In this phase of study, the effectiveness of the treatment, any potential side effects of the treatment are closely monitored in a larger population. Also this phase typically includes a comparison of the treatment under study with other drugs available for the same condition. A Phase IV clinical trial is called “post-market” research because it is conducted after a drug has been made available for use in the general population. Phase IV studies typically include several thousand participants and help to refine aspects of the treatment’s best usage and ideal treatment candidate.

The Curemark study noted in Friday’s post is a Phase III treatment trial that aims to compare the effectiveness of a compound called CM-AT versus a placebo administered 3x per day for 90 days. This particular trial is “double-blind” meaning that neither the research participants nor the clinical staff administering the treatment know whether a subject is receiving the active compound or a placebo at the time the treatment is given. Double-blinded studies are believed to produce more objective results because the outcomes are not influenced by the subjects’ or clinicians’ expectations about the treatment. Treatment information will be revealed for all subjects when the blind is broken at the end of the study at which point an analysis of the effectiveness of the new treatment versus control can be compared.

The clinicaltrials.gov website lists 219 studies that result in a search for “autism.” A smaller number (110) are seeking volunteers. The treatments being assessed include behavioral therapies, different drug compounds, transcranial magnetic stimulation (TMS) and others from researchers all over the world.  12 of the 219 studies were sponsored by Autism Speaks and nine of those are actively recruiting.  We encourage anyone interested in participating in research to seek more information about these studies.

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Autism in the News – Monday, 07.26.10

Disabilities act anniversary, but there’s still long way to go (msnbc.com)
James Hill was fired from his job several years ago because of visible disfigurements from a fire that left him burnt over 85 percent of his body. Read more.

They just can’t stand it: The smallest things bother kids with sensory processing disorder, but skeptics scoff at the diagnosis (Kentucky.com)
It’s unbearable to wear clothing with tags. It’s impossible to use scissors, no matter how many times you try. All mushy or soft foods are unbearable – not because of the flavor, but the consistency. Read more.

Laughter lines (UK)
Comedy script writer Dean Wilkinson tells Lucy Richardson about his passion for children’s entertainment and why he’s creating the new Wombles on Teesside. Read more.

Katy is poised to take to the air (UK)
A teenager who suffers from cerebral palsy is preparing to leap from a plane to raise money for a north-east residential school. Read more.

Motorola accused of poisoning workers and their kids (Techeye.net)
Maker of the Razr phone, Motorola has been accused of poisoning its workers and their children. According to the Sun Times, a group of former Motorola workers and their children claimed toxic substances used to make Motorola products caused serious birth defects in at least 30 children born to workers employed by the company since the 1960s. More than  71 people have filed the suit in Cook County Circuit Court. Read more.

Making physical education fun for children with autism (The Brownsville Herald)
Betty always had lots of energy for the children in Room 103. She was the adapted physical education teacher for the special education program there. Betty came every Tuesday and Thursday, rarely missing even a day with these children. At the beginning of the year, she saw that the class had a couple of new students. Read more.

Ten Tips for Vacationing with Your Child – Part 1

July 26, 2010 15 comments

This guest post is by Elaine Hall, author of the memoir NOW I SEE THE MOON: A Mother, a Son, a Miracle and founder of The Miracle Project, a theatre and film arts program for children with special needs. She is also the mother of a fifteen-year-old son with autism. Discuss the book on Facebook and follow Elaine on Twitter @CoachE.

Ahhhh, summer vacation. It’s finally here!

For many of us who have children on the autistic spectrum, long gone are the expectations of spending glorious temperate days lounging under a coconut palm in a tropical paradise while watching the kids effortlessly scoop sea-critters into a bucket of brine. Understandably, some of us may decide to forego summer fun-in-the-sun getaways.  Our experience has been that taking a family vacation is “just too difficult!” and these days, also too expensive. But with a little planning, family vacations need not be so stressful, and may even be joyful!

So what can we do to enjoy time together while on holiday?

First, it is important to consider where our children are in their ability to process and hold information, to evaluate their sensory needs, and to contemplate how well they are able to respond to stress (seemingly fun-filled environments can be completely overwhelming for our kids). Extensive preparation is key for all of these.

Tip #1 – Focus on doing something that you know your child enjoys.

Soon after I adopted my son, Neal, from an orphanage in Russia, we joined my family reunion at a beach house in Delaware. When we get to the beach, it is clear that Neal is petrified of sand, of water, of anything to do with the beach.  I make excuses to my family, “He doesn’t know the ocean. He comes from the Ural mountains in Siberia, for goodness’ sake.” Even as I defend him, I’m disappointed. I love the ocean, and I yearn to share the joy of the boundless sea with my son. Instead, we surrender, and end up spending our time on the patio of the beach house where there’s a wading pool. We’re joined by my mother, who was also raised in the mountains – the Shenandoah Mountains in Virginia, and she doesn’t like getting sandy.

Know what truly interests your child and plan your trip where you know he/she can be successful. Also, it is important to note that our children’s ability to regulate their own emotional states is largely affected by our own. So if we are anxious, disappointed, frustrated, or angry, guess who’s going to feel even more so?

Tip #2 – Prepare your child’s sensory system. Anticipate, it makes Sense!

If you decide to go somewhere you’ve never been with your child, or try new activities together, make the effort to really prepare (weeks before you take your trip, if possible). After the “failed” beach experience, one of my son’s therapists, Shelley Cox, and I take Neal close to the ocean. Shelley takes a bucket of sand and actually brings the ocean to Neal. Slowly and compassionately we allow Neal to get acclimated. First Shelley puts sand on his feet, rubbing it gently on his skin. I then realize that the hot, scratchy sand must have been irritating to his sensitive tactile system, reflecting why he avoided walking on the sand, preferring to be carried to his beach blanket. I am even clearer that Neal’s fierce preferences are not random. I better understand his world and anticipate his needs.

Each day Neal walks a few steps closer to the beach. Shelley continues to bring the various elements of our impending vacations experience to him. He smells the water Shelley brings to him; she pours it over his legs, getting a sense of his comfort zone. This goes on for seven days, until, finally, Neal walks on the sand to the ocean with confidence. For the rest of the summer, Neal is able to walk to the ocean with me. He wants to. Today, Neal loves the surf and can’t wait to jump in the waves!

Tip # 3 Rehearsals for life: Practice, Practice, Practice!

Before we fly on an airplane with Neal, we role-play everything you can imagine – packing bags, waiting in lines, taking off his shoes and going through security lines, placing luggage under the seat, wearing a seat belt, and sitting patiently. We use visuals – we watch DVDs of airplanes, go online for pictures, we pretend play with toy airplanes, look through airplane magazines. We practice placing our hands over our ears during take-off/landing and we actually visit the airport.

If he is going to meet new people, we show him pictures and tell a story about them, letting him “meet” them first in the comfort of our home. If we are visiting family members whom he hasn’t seen for a while, we show him photos of passed experiences and current photos so he can see what they look like now.

We use social stories to help make sense of new experiences. This provides Neal with a sense of control, and diminishes his anxiety.

This is the first post in a three-post series about vacationing with your child who has autism. Check back later this week for more tips and subscribe to the Autism Speaks Blog to make sure you don’t miss out!

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The End of the IEP and the Beginning of “Reasonable Accommodations”

July 25, 2010 15 comments

This guest post is by Autism Speaks staffer Kerry Magro.  Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started an Autism Speaks U Chapter: Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events. It is an exciting and collaborative way for students to raise funds and awareness for Autism Speaks, while supporting their local autism communities.

In June 2007, I graduated from high school. It was an amazing time for me. The majority of my classmates and I were off to great new beginnings. My new beginning began at Seton Hall University. “This is going to be great!” I thought to myself on many occasions before the first day of classes.

Before this day happened however all new incoming freshman had to attend a summer “Orientation Period.” During this period we would have the chance to spend the night in the freshman dorms, receive our laptops and also get to meet several faculty members at the school. In addition to this, I had one additional separate meeting that most of the other freshman didn’t – an accommodation meeting with The Director of Disability Support Services at SHU.  This is when the ball dropped for me.

During the meeting I learned many intriguing and frightening things about how college was going to be a huge difference from high school; the main difference for me was going to be “The IEP.” When I asked what the difference would be, I was told the difference was I would not have one. I can’t believe I was that oblivious that this was going to happen.  Later, I learned that under the Individuals with Disabilities Education Act (IDEA) the IEP only exists K-12th grade. At the college door you get a Section 504 accommodations plan.

In college, you only receive “reasonable accommodations” to help make the classes accessible to those specific students with disabilities. The bottom line: there is no plan for you. The only way to receive what you need is by being independent and advocating for your needs. But what does anyone need? If you are a freshman and have autism how do you explain what you need?

At times, this led to many distractions that never would have occurred when I was younger. Sometimes I thought it was unfair. I had to advocate for my own single room in the dorms due to my social complications, extended time on tests for my reading comprehension, a note taker for my classes due to my lack of motor skills and many other complications. For someone trying to fit in it seemed like it was designed to make you stand out like a sore thumb. It even seemed as if as soon as I accomplished one of these tasks, the next semester would begin and it would start all over again for my new courses which required different accommodations.

When you add this to managing a full course load, trying to socialize with your  fellow peers, along with being involved in extra-curricular activities, it can sometimes feels like you are drowning. I mean, “reasonable accommodations” are supposed to help level the playing field, not hinder you in any way. There isn’t a “reasonable accommodation” for that.

Although getting accommodations sometimes was daunting, I was still able to get by and will be going through the same process again with Disability Support Services come this September in my senior year at Seton Hall. For several semesters now I sit up front and tape most of my classes and download the recordings onto my computer, instead of utilizing a note taker. Never would have thought of that freshman year. For those reading who are younger and not yet in college, my advice is to sit in on as many IEP meetings as you can. Learn and ask as many questions as possible.  The letters after your diagnosis don’t tell you if you need extended time or a note taker, but knowing if you are a visual or auditory learner may. Within this I would also strongly consider letting your parents be involved in some of your early decision making, especially when it includes freshman year accommodations. Independence is not grown over night and we all need that added voice sometimes to make sure we are level-headed and knowing exactly what we are getting ourselves into.

As many say early intervention is the key once first diagnosed, early intervention for those on the spectrum in college (and high school for that matter as well) is the key to ultimate success. What I’ve noticed about autism over the years is that it’s not a weakness unless you let it become one. Don’t let it hinder you. Let the advantages of who you are and what you have to offer be your ability to make it at the college level; just always know what your weaknesses are so you can be ready for whatever is to come next!

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The Million Dollar Phone Call

July 24, 2010 1 comment

When the phone rings at Autism Speaks, you never know what to expect. It could be a parent, who has a child newly diagnosed with autism, searching for resources. The caller could planning her wedding; she and her husband want to make a donation in lieu of wedding favors.

Or it could be a gentleman who is auctioning off the world’s largest centrifuge (starting at $12 million) on eBay, who will donate 10% of the proceeds (over $1 million)  to Autism Speaks, if it sells.

Upon relaying this story to my co-workers, my favorite response was, “I always wanted to go to space camp!” Yes, for that special someone out there who has an extra $12 million, it would be pretty cool to have your own space camp.

Check out the eBay auction page, which includes a description and some unbelievable photos – it is certainly one of the most interesting items I have ever seen, let alone one which will greatly benefit Autism Speaks if sold.

Join us in thanking the donor for his generosity – we hope it sells!

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Grandma’s Recipe for Advocacy Success

July 23, 2010 3 comments

Autism Speaks' staffer, Jennifer Smith, with a puzzle piece cookie

Every Christmas season when I was little, my grandmother would make a huge batch of cookies and mail off a box to each of the grandkids.  We would rip open the containers and look at all the pretty little cookies that were layered through it. She used the same basic dough to make each cookie, but they were all decorated differently and came in a variety of shapes, sizes, flavors and colors.

When I am talking to Autism Speaks volunteers throughout the country who are working tirelessly on autism insurance reform legislation, I often think about my grandmother’s cookies when I refer to our grassroots advocacy approach as our sugar cookie recipe.  This is because, whether we are advocating for autism insurance reform legislation in the Kentucky State Senate, the New York State Assembly, or the United States House of Representatives, the “recipe” to move from an idea, to a bill, to an enacted law remains the same.

Like my grandmother’s cookies, the Autism Speaks Government Relations Team, in partnership with our Chapter Advocacy Chairs (CACs), families, and a network of other “on the ground” individuals and advocacy organizations begins with a basic recipe for success that we then decorate differently and bake into a variety of shapes, sizes, flavors, and colors.  Like the cookies, no two autism insurance reform bills look exactly alike.  The basic recipe is the same, but certain ingredients are tweaked, added, or removed according to the specific circumstances in the state.

Grandma’s Cookie Recipe for Advocacy Success:

Ingredients -

  • 2 cups of all-purpose flour – This is our grassroots.  We need twice as many as you would need to give it all of their purpose to make these bills become laws.
  • 1 stick of butter – This is our internal direction or lobbyists.  We need the real thing, not an oily substitute, to help us grease the skids.
  • 1 cup of sugar – This is our policy.  It sweetens our cookies and keeps us coming back for more as that policy reforms the lives of children with autism across the United States.
  • a pinch of salt – This is our champion or the political leadership of a state, those who are worth their salt and have the fortitude to stand up for our children.
  • 2 eggs – This is our unity and focus with the autism community.  It is a binding ingredient that pulls all of the other ingredients together into delicious dough.

Directions – Stay tuned!

For nearly three years, Autism Speaks has focused its state legislative agenda on autism insurance reform.  To date twenty-three states have passed legislation that will bring insurance reform to thousands of families coping with the financial struggles of autism.  Over the past few months, we have published several blog posts written by our CACs and chronicling the journey in their state from idea, to bill, to enacted law.  Our CACs, with their strong leadership skills, their ability to build bridges with others in their communities, their political savvy and policy knowhow are a key ingredient in our cookie recipe for success.  They are our flour.  Over the next few weeks, we would like to show you some great examples of the other ingredients in our recipe for advocacy success and directions for how these ingredients combine to successfully enact a state autism insurance reform law.  A grassroots baking lesson of sorts.

At Autism Speaks, our goal is straightforward.  We want to achieve as many benefits for insurance coverage for as many individuals with autism as possible for as long as possible while working within the parameters of existing law and the political environment of each individual state.  There are still 27 states that have yet to enact autism insurance reform legislation.  Additionally, reform is necessary at the federal level to ensure that all individuals with autism across the country, from infant to adult, have appropriate health insurance coverage for medically necessary, evidence-based autism treatments, therapies, and care.  What ingredients are still missing?  How do we add them into the batter so that everyone can eat?

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org


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