In recognition of National Grandparents Day, on September 11th Autism Speaks is celebrating the grandparent connection in families affected by autism. During the month of September, we are asking grandparents to share your experiences, so that other grandparents across the country can benefit from your knowledge and the road you have traveled.
How did you educate yourself about autism? Did you find any books particularly helpful? How about websites? A community group or agency? What can you recommend to other grandparents to help them get up-to-date and be well informed?
September 7 was an important day for the nation’s autism community as Congress began the effort to renew the landmark 2006 Combating Autism Act. By unanimous voice vote, the Senate Health, Education, Labor and Pensions (HELP) Committee moved S.1094, a bill which would renew the act for another three years, out of committee and on to the full Senate for a floor vote. While an important step, the HELP vote was just the first of several that Congress will need to complete by September 30 when the law expires.
To keep up the momentum, it is important that advocates urge those U.S. Senators who have yet to cosponsor S.1094, the Combating Autism Reauthorization Act (CARA), to do so immediately. Nearly a third of the Senate has signed on to the bill, including five new cosponsors this week, but we need more. Visit our CARA Action Center to learn how.
Getting the bill voted out of the HELP committee required that a quorum of 12 Senators were in attendance. An intensive grassroots efforts by Autism Speaks through the Labor Day weekend helped ensure that 14 members attended and all voted to approve the bill for consideration by the full Senate. When that vote will occur is uncertain.
In the U.S. House of Representatives, the CARA bill (HR.2005) similarly must first move out of the Energy & Commerce Committee before it can go to a full vote on the House floor. But before the committee acts, it must receive confirmation from Rep. Eric Cantor (R-VA), as the House Majority Leader, that he will allow the bill to go to a floor vote. Autism Speaks has launched a radio ad campaign in Rep. Cantor’s home district (Richmond-Harrisonburg) encouraging him to support CARA. Leader Cantor was a co-sponsor of the 2006 CAA, serves on the Congressional Autism Caucus and has attended Walk Now for Autism Speaks events in the past.
The original 2006 act authorized nearly $1 billion of federal spending through 2011 on biomedical and treatment research on autism. CARA would continue funding at current levels, authorizing $693 million over the next three years, without adding to the federal debt. The 2006 law was critical by establishing autism as a national health priority. Federal funding was increased by virtue of the 2006 law, leading to significant advances in the understanding of autism. The CAA required the federal government to develop a strategic plan to expand and better coordinate the nation’s support for persons with autism and their families. Important research findings have resulted, critical studies are underway and promising new interventions have been developed for children with autism, helping them to lead more independent lives, thereby reducing the need for publicly funded special education and social services.
Once a final bill is voted out of Congress, it goes to President Obama who has promised to sign a reauthorization bill this year. ALL of these steps must be completed by September 30 when the original act expires. To track the progress of the CARA legislation, visit the CARA home page at Autism Votes.
With just a month to go, time is running short for Congress to renew the landmark Combating Autism Act of 2006. A critical first step arrives Wednesday September 7 when the U.S. Senate’s Health, Education, Labor and Pensions (HELP) Committee takes up S.1094, the Combating Autism Reauthorization Act of 2011(CARA.)
It is essential that a sufficient number of committee members attend the September 7 meeting and then vote to send the CARA bill on to the full Senate for a floor vote. Visit our CARA Champions page here to:
1) find out if your Senator is a member of the HELP Committee
2) make sure they have RSVP’d to attend this critical hearing and
3) find out how to encourage them to RSVP if they have not.
Meanwhile, the U.S. House of Representatives must also vote its version of the CARA bill (HR.2005) out of the Energy & Commerce Committee and on to a floor vote. Once these steps are taken, the House and the Senate must agree on a final version of the CARA bill before it can be sent to President Obama for his signature. This is a lot of work! And it all has to get done by September 30!
Why is this so important? The enactment of the Combating Autism Act (CAA) in 2006 was an historic moment for our community as it has guided the federal government’s response to the staggering rise in autism across the United States. Because of the CAA, Congress was able to invest nearly $1 billion in federal resources through 2011 on biomedical and treatment research on autism. The law required the federal government to develop a strategic plan to expand and better coordinate the nation’s support for persons with autism and their families. Important research findings have resulted and critical studies are underway. Promising new interventions are making a difference in our children’s lives. For more CAA success stories, click here.
The CARA bill is sponsored in the Senate (S.1094) by Senators Robert Menendez (D-NJ) and Michael Enzi (R-WY,) and in the U.S. House of Representatives (HR.2005) by Congressmen Chris Smith (R-NJ) and Mike Doyle (D-PA.) CARA would continue the work started under the CAA for another three years and authorize Congress to dedicate another $693 million exclusively to autism research and treatment. To date, 23 other Senators and 61 House members have signed on as cosponsors, and President Obama has promised to sign a reauthorization bill this year.
Visit our CARA Action Center to find if your Senators and Representative are cosponsors. If they are not cosponsors, find out how you can get them to sign on.
Since the original Combating Autism Act was approved in 2006 with near-unanimous support in Congress and signed into law by then President George W. Bush, the prevalence of autism spectrum disorders (ASDs) has risen to 1 in 110 American children – including 1 in 70 boys. An estimated 1.5 million individuals in the U.S. are affected by autism, and government statistics suggest the prevalence rate is increasing 10-17 percent annually. America clearly must step up its response to autism. The responsibility lies with Congress and the answer is passing CARA.
This is a guest post by Dr. Krysti DeZonia, a founding member of TERI (Training, Education, and Research Institute) and the CEO of the International Association for Life Quality.
Let’s start with a basic fact: Parents with kids who have autism need more help.
We simply aren’t able to access the degree of support we need in order to help our children, and ourselves, lead happy and fulfilling lives. We are stressed, tired, and looking for answers that don’t seem to be available to us. It is, without question, time for a new model of family support.
We think we have at least part of the answer: Special Needs Life Quality Coaching.
For the uninformed, a Life Coach is someone who is trained to help you meet goals that you have been unable to attain without some help. A Life Coach will assist you in designing an action plan to change careers, recharge your love life, or earn your first million. They hang with you until you reach your goals.
After 30 years, when looking for a way to formalize our support for parents and expand it worldwide, Life Coaches came immediately to mind. Upon further research, we found—to our great surprise—that no one is providing specific training to people so they can serve families whose children have special needs. We closed this gap by designing, and offering, online Special Needs Life Quality Coach training.
Given that this is a completely new career path, we were uncertain whether our idea would, in reality, meet the unmet needs of families and individuals with autism and other special needs. We also weren’t sure who would be interested in taking the class and in starting a private practice in this field. Here’s what we have learned.
Almost every family we talk with is interested in having access to a Special Needs Life Quality coach. There isn’t a need for too much explanation—they get it.
Our class is offered online and designed for working people, so anyone living anywhere can take it. The hours are flexible, and the class gives students opportunities to have direct experience with families and their children or adults as well as with their local service delivery system. By the end of the 16-week course, they have learned valuable coaching skills, have forms and other tools for documenting their progress, and are able to access follow-up support when they need it.
We also weren’t sure who would take our classes. We have found that our students come from all walks of life, but are primarily professionals who already have a private practice and want to extend it (financial planners, attorneys, psychologists, etc.), educators, and parents or other family members. These are all people who see an unmet need and are anxious to fill it.
How hard has it been for coaches to find families who want their services? Not hard. One of our coaches, Ben, had 16 interested clients after he posted a notice on a local autism forum—way more people than he could handle. He specializes in helping individuals with autism develop social circles that will, hopefully, grow into friendships. He’s having great success so far.
Our dream is that the help of a Special Needs Life Quality Coach will soon be as available to families and individuals with autism as is speech or occupational therapy. Spread the word.
If you want to learn more about Special Needs Life Quality Coaching classes or services, go to www.teriinc.org/ialq or call 760-721-1706.
Dr. Krysti DeZonia is a founding member of TERI (Training, Education, and Research Institute-www.teriinc.org) and is the CEO of the International Association for Life Quality. You can follow her blog at www.QandAwithDrK.com.
Simple conversation often provides our organization with valuable insight into the lives of our families, their triumphs, struggles, issues impacting their lives and helps us understand how to better serve the autism community’s needs. That’s why we took the conversation one step forward and conducted Autism Speaks’ very first online “Community Survey.” Designed as a “conversation starter,” the survey explored why their community is, or is not, a good place to live if you have autism. We asked if they were happy with the availability of services in their community, and specifically explored access to medical and clinical care including diagnosis, therapeutic services, educational services in public and private schools, inclusive or adaptive recreation and respite for families and caregivers.
We wanted to hear from all corners of the country, from people with autism, their parents, siblings, clinicians, therapists and anyone else with perspective on this issue — and the response could not have been better. Almost 1500 people engaged in the survey which was open for a three week period and more than 800 members of the autism community in the 48 contiguous states and the District of Columbia completed the survey. Thanks to everyone’s input, we came away with a wealth of opinions, personal experiences and information that has allowed us to identify the best communities to live in if you have autism. More importantly we heard what characteristics are valued by our families that make a community livable. We encourage everyone take a look at the rankings, which were just announced today, and see if your community made the list. We also want to know your thoughts on the issues presented in the survey to keep this vital conversation moving forward and in the public spotlight. To view the results of the Autism Speaks Community Survey, please click here.
This “In Their Own Words,” is written by Glen Finland. She is the author of “Next Stop,” a memoir about raising her autistic son to adulthood and learning to let go.
Last year my autistic adult son David wrapped up twenty years of education, ten of them spent in private school, the other half in public school. And, hindsight being 20-20, here’s what educating a high functioning autistic son like David taught me. It’s simple mathematics: Send your kid to public school and keep your money in your wallet. You’re going to need it for what happens next—because what happens next is the rest of his life.
Parents of a young adult with special needs face an unending management of another person’s life over the decades ahead: housing, transportation, insurance, clothing, food, job coaching, medical expenses, and, of course, quality of life expenses like entertainment, vacations, and even pets. Think of how far the tuition fee of a single year of private school could go toward taking care of some of these expenses down the road. Now multiply that figure by twenty. The numbers will tell you if it’s a wise investment.
In public school with a good IEP, the services are free. They should be; you’ve already paid for them with your taxes. Your child will also learn in less of an isolated bubble—and yes—be forced to toughen up a bit by facing the real world struggles of life in the quicker moving mainstream. Don’t expect runaway success there. In fact, be prepared for regular bouts of failure. But no matter how painful the lesson, down the road your child will be that much better equipped for the the daily slights he’s sure to incur—those careless, casual assaults on his spirit that he will face simply for being differently abled.
For example, it has come to my attention that my 23-year old son is now a heavy tipper. These days he drives a 54-mile roundtrip each day to his job as a custodian at a federal office building outside the nation’s capital. He’s a good driver, but when he stops off for coffee along the way, he might pull out a $20 bill to pay for a single cup of java, then walk away. His generosity is not because he’s got such deep pockets; it’s because he wants to avoid the impossible math involved in the exchange and, even more, the eye contact that goes along with it. Whose pocket that leftover chunk of change ends up in is totally dependent upon the scruples of the particular cashier. It took me months to figure out where all his change was going and how to remedy the situation with a few five dollar bills, but these are the kind of real world surprises that continue to sneak up on us every day. This reminds me to be careful about who I allow to “keep the change” when it comes to planning ahead for my son’s future.
You know, it’s true what mothers have always said about the time with our children: “The days go by like years, and the years go by like days.” So go ahead and let your child ride the big yellow public school bus for now. It’ll do him no harm. And that way he can count on your really being there for him once school lets out for good.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
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!