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Posts Tagged ‘New Jersey’

Keep Going, Keep Making a Difference

October 31, 2011 Leave a comment

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a graduate student at Seton Hall University. He started the club 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.

In late September, The Combating Autism Reauthorization Act (CARA) was passed through Senate and was then signed into law by our President Barack Obama. One of the champions in Senate who helped us get there was New Jersey Senator Robert Menendez. Almost 2 weeks ago he came to an autistic school called Regional Day in my hometown of Jersey City, New Jersey to give a speech about the significance of the act. What I was amazed at though was when I received a call from his office to speak at the event! In front of countless media, family, and friends I spoke about my story with autism and what the impact an act like this will have not only for me but for countless others who are affected by autism.

The Combating Autism Reauthorization Act as some may recall will grant 693 million dollars to the autistic community for the next 3 years. Even though this is a great feat we still most continue to push forward as I stress in my speech as autism never takes a vacation so neither can we.

Below is a Youtube clip of me speaking at the event that I hope you all enjoy. Thank you!

A Vision for New Jersey’s Autism Community

August 25, 2011 2 comments

This post is by Peter Bell is executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his wife, Liz, reside in Pennington, New Jersey with their three children. Their eldest son, Tyler, has autism.

As the summer winds down, it is a good time to reflect on the Garden State’s accomplishments in addressing the needs of its citizens with autism and outline my back to school wish list. New Jersey has found itself in a leadership position in serving residents affected by autism spectrum disorder (ASD), by establishing some of the best private and public schools serving students with autism. (Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders.)

Current, forward-thinking policies have New Jersey on track to secure our legacy due to several other factors: the passage and enactment of autism insurance reform legislation in 2009 for evidence-based interventions, continuation and support for a Governor’s Council on Autism Research, establishment of an Office of Autism, passage of First Responder’s Training, and an adult service initiative on housing that will be a catalyst for affordable and appropriate housing options for adults with developmental disabilities. In addition to the formal mechanisms that help to improve our human services infrastructure, there has also been a thoughtful and concentrated effort to embrace the autism community’s challenges by Gov. Chris Christie, the First Lady and other administrative officials.

Notwithstanding all of these important efforts, are they enough to really support the impending needs of people with autism as they transition into adulthood? Today, it is estimated that there are approximately 1.5 million Americans with living with ASD throughout the country, with about 80 percent under the age of 21. According to the Centers for Disease Control, New Jersey’s one-in-94 autism prevalence rate is one of the highest in the nation. Using simple math, we have at least 25,000 fellow New Jersey residents, most of them children, living on the autism spectrum.

Creating a New World

Some people have described the wave of children with autism that will need adult services in the coming years as an impending “tsunami” of required services. But using the tsunami metaphor implies a disaster, and I believe we have the opportunity to create a different world — a world in which adults with autism will be fixing our software, making our keys at Home Depot, carefully tending their gardens at their homes, volunteering at local fundraisers and making New Jersey a great place to live as important contributors to our society and taxpayers. Far too many adults with autism and other developmental disabilities are unemployed, sitting at home and isolated from their peers when they age out of their educational entitlement.

So my back to school wish is to review our intent and our mandate to prepare this group of children for the rest of their lives. Congress, through the transition services mandate of IDEA (Individuals with Disabilities Education Act,) wanted students with special education needs to transition smoothly to meaningful adult outcomes. The act defines transition services as “a coordinated set of activities for a child with a disability that is designed to be a results-oriented process… to facilitate the child’s movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living or community participation…”

Certainly, this is a powerful piece of legislation that directly establishes the broader competencies for passage from adolescence to adulthood. But once the educational entitlement of IDEA ends (at the end of the academic year in which the student turns 21 in New Jersey), there is an even greater need for individuals and families to be educated on the supports afforded to adults with developmental disabilities. Most families are disheartened to know that there are no guarantees for adult services. There is a dearth of programs for adults with specific needs and the current system is beyond capacity.

Securing Funding

One of the most significant challenges is funding for services. Funding can directly impact the ability for a provider to expand services to meet the growing demand and can also affect the ability to recruit and retain direct support professionals. The primary long-term funding source for adults with developmental disabilities is Medicaid’s Home and Community Based Waiver Services (HCBS). Currently, these are being revised to provide a more global waiver for all services and that reform is happening in New Jersey. As services become more self-directed, individuals and families must insure that HCBS waivers are written and implemented to serve adults in those services that best meet their particular needs.

Medicaid waiver services are based on eligibility and the availability of resources, and have limitations in service capacity. According to the state Division of Developmental Disabilities, there are approximately 10,081 individuals enrolled in our Medicaid waiver program and the wait list is over 8,000 (including 4,000 in the “urgent” category). It’s not hard to see the unsustainability in a service system that is unprepared for the number of adults aging out of their educational entitlement. Most families will face a crisis before they receive services under HCBS. It makes perfect sense to coordinate a collaborative system of supports that is defined prior to students aging out of their entitlement.

The Transition Tool Kit

Even though we have defined what type of transition services an adult with autism needs (Autism Speaks recently developed a Transition Tool Kit for adolescents with autism), there are limited services that have training and a specific focus on the needs of this growing population. While we are making great strides in understanding the needs of individuals on the spectrum, there is still a great deal we don’t understand about autism. As our leadership debates reforms in our federal programs, we are comforted to know that our New Jersey delegation in Washington understands the challenges and opportunities that befall the autism community, and is taking action. On September 30, the Combating Autism Act of 2006 (CAA), essential legislation that is central to the federal government’s response to the autism health crisis, will sunset. U.S. Senator Robert Menendez (D-NJ) and Congressman Chris Smith (R-NJ) have both introduced legislation that will reauthorize the CAA by extending this legislation at current funding levels. Longtime champions of the autism community, their continued support on legislation so vital to the needs of people on the autism spectrum is gratifying. The research performed under the CAA has advanced, and will continue to advance our understanding of how to help individuals with autism and their families negotiate their lives.

Government can’t do it all. The private and philanthropic sectors have to do their part. Autism Speaks, the nation’s largest autism science and advocacy organization, has invested in autism research in New Jersey through grants to Rutgers, UMDNJ and Princeton University. In addition, the organization has made community service grants to organizations across the Garden State that are directly delivering services in innovative and replicable ways.

We recognize that government cannot solve all the issues alone and we are poised and ready for the challenge ahead of us by highlighting new and innovative employment opportunities, identifying affordable housing that adds value to neighborhoods, and keeping our eye on the prize that all New Jersey residents have the opportunity to work and thrive in our state. Working collaboratively, the public and private sectors can and must rise to the occasion and meet the needs of New Jersey’s current and future adults with autism.

To read full article, please visit NJ Spotlight.

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

Completing the World’s Largest Jigsaw Puzzle for Autism Speaks!

This blog post was written by Kathy Reilly for her daughter Kaitlin, who is a junior at Northern Highlands Regional High School in Allendale, New Jersey. 

On April 15, 2011, Kaitlin Reilly launched her “Every Piece Counts” project in which she is completing the “World’s Largest Jigsaw Puzzle” (24,000 pieces and 70 sq. ft.), entitled “LIFE” to raise $24,000 for Autism Speaks. Kaitlin holds the titles of  “Youngest in the World to Complete Solo”, “The Youngest in the World Solo after Mixing All the Puzzle Pieces Prior to Assembling” and “First to Complete in New Jersey, USA”

Since the launch, Kaitlin and her project have been featured in numerous newspapers across the county and have raised over $3,000 for Autism Speaks.  To read about the project and to see the progress of the puzzle, visit www.everypiececounts.com. Kaitlin has set-up a camera that takes a photograph of her working on the puzzle every minute and at the end there will be a short video of her completing the entire 24,000 piece puzzle. Check out the “teaser’ video below!

In addition to working hard on the puzzle, Kaitlin is actively getting the community involved. She organized a “Dress Down Day” at a local school where the teachers and staffed donated $5.00 to wear casual clothing for a day. Kaitlin is also teaming up with Moe’s Southwest Grill in Mahwah, NJ,  to host a dine-in night and benefit concert. Some of NJ’s local bands and high school rockers will be playing on Saturday, June 12th from 5 – 9 p.m. Moe’s will be donating 10% of the proceeds from the entire day to Autism Speaks, directly benefiting Kaitlin’s project. If you are in the area, please be sure to stop by!

Kaitlin would love your support of her project, by making a donation and sharing it with family and friends. Feel free to “LIKE” the project on Facebook, since she’s trying to get 24,000 people to “LIKE” the page. She also needs a good home for the puzzle when it is completed, so please email her if you have any ideas/suggestions at evrypiececounts@gmail.com.

Please help Kaitlin’s efforts by reaching her goal of $24,000 and donate at http://bit.ly/jz0DQw.

If you’re a high school or college student that would like to get involved with our organization, visit the Autism Speaks U website for information. 

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