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Posts Tagged ‘Achieving a Better Life Experience Act’

The 11th Annual Walk Now for Autism Speaks Palm Beach Draws Big Crowd for Autism Awareness in Florida

March 4, 2012 2 comments

On Sunday, March 4, 2012 – More than 7,000 people, including individuals with autism, their families and friends attended the Walk Now for Autism Speaks Palm Beach at City Commons in Downtown West Palm Beach, Florida. The Walk has raised over $344,000 so far, all of which will support Autism Speaks’ work, both locally and nationally fund innovative autism research and family services, to increase awareness about the growing autism health crisis, and advocate for the needs of individuals with autism and their families in Palm Beach and beyond.

The event was emceed by NBC News Channel 5’s West Palm Beach Anchor, Michael Williams. Honorary Chairs Suzanne and Bob Wright, co-founders of Autism Speaks, addressed the crowd with moving speeches, motivating everyone to Light It Up Blue on April 2 and demanding action for the passage of the Achieving Better Life Experience Act (A.B.L.E – legislation allowing families raising children with disabilities to save tax-free for their future needs) in congress.

Walk Corporate Chair Denise Negron, Chair Laura Pincus and Co-chairs Amy Schwartz and Debra Rosenfeld along with their amazing Walk Committee and 200+ volunteers made sure that the morning went off without a hitch. Unfortunately, the one thing out of their control was the weather. In the interest of public safety, the actual Walking portion of the day was canceled due to severe storms and high winds. The activities surrounding the Walk, though, were enjoyed by the thousands of walkers who came out for the event.  Before the weather became a factor however, the second annual Run before the Walk took place with more than 200 runners lacing up for autism awareness.

SheKnows.com, the online living magazine, was on hand to promote their “She Knows Where the Other Sock Went” dress. The campaign features Autism Speaks’ long-time supporter and Grammy Award Winner Toni Braxton wearing the dress created by celebrity designer Michael Costello and photographed by renowned fashion photographer Nigel Barker. The unique, high-fashion gown made out of socks that are missing their mates was displayed at the Walk and will next travel to Los Angeles later this spring to be auctioned off with all proceeds benefiting Autism Speaks.

For the sixth straight year, Toys”R”Us and Babies”R”Us proudly serves as the North American sponsors of Walk Now for Autism Speaks. The company’s mascot, Geoffrey the Giraffe, stopped by the Walk to meet and take pictures with walkers. Additional sponsors included: Sandra C. Slomin Foundation and Family Center for Autism and Related Disabilities, South Florida Ford, TD Bank, Palm Beach Gardens Whole Foods Market, Palm Beach Spine and Diagnostics, Northwestern Mutual Financial Network – Striano Financial Group, St. Mary’s Medical Center, The Children’s Hospital at Palms West, and Searcy, Denney, Scarola, Barnhart, & Shipley, Gunster, and the Miami Marlins.

Also taking pictures with families was beloved McDonald’s mascot Ronald McDonald. People visited the MedClaim booth for their chance to win a free iPad and South Florida Ford Dealers provided an Official Pace Car for the start of the Walk. They also made generous donations for everyone who logged into their Facebook page. Children from Allamanda Elementary wow’d everyone with a dance, The Exceptional Theater Company entertained the crowd with a song, and Makayla Kelly kicked off the Walk with the National Anthem.

Walk Now for Autism Speaks are the signature fundraising events for Autism Speaks, raising more than $28.5 million in 2011 in 85 cities across the U.S. and Canada to support autism research, awareness and advocacy. Last year’s Walk Now for Autism Speaks Palm Beach event attracted more than 7,000 walkers and raised over $390,000 for families and individuals. Autism Speaks has provided funding to Palm Beach services providers, including Project LifeSaver through our Family Services Community Grant program. Autism Speaks science grants have supported research at The University of Miami and Florida International University.

For more information about the 2012 Palm Beach Walk Now for Autism Speaks visit http://www.walknowforautismspeaks.org or contact palmbeach@autismspeaks.org or (954) 421-9997.

To see an interview with Bob Wright, please click here.  To see emcee Michael Williams thank Suzanne and Bob Wright, click here.

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When an Autism Diagnosis Brings Relief

February 29, 2012 13 comments

Vincent Randazzo’s son Michael was diagnosed with Down syndrome early in life, leading Vincent to become actively involved with the National Down Syndrome Society (NDSS). Autism Speaks and NDSS are now partnering in their support before Congress for the Achieving a Better Life Experience (ABLE) Act which would allow families raising children with disabilities, such as autism or Down syndrome, to save tax-free for their future needs.

Vincent Randazzo explains how his family’s connection with autism runs even deeper.

When my son Michael was born with Down syndrome 13 years ago, my wife Dorothy and I were upset and sad for Michael that he would not experience a normal life. Because of our circumstances, however, we did not experience the sense of terror that so many parents face when they get the news that their newborn has a developmental disability.

Michael has a brother and a sister who would love him and care for him like any other sibling.  At the time, my wife was a public health nurse in the public school system and an advocate for students with special needs.  We quickly became aware that medical research had advanced to the point where people with Down syndrome were living much longer and more fulfilling lives, and the future held exponentially greater promise.

I immediately engaged in Down syndrome advocacy, supporting the priorities of the National Down Syndrome Society and serving on the boards of a local parent support group and a national research foundation.  But within a few years, everything we thought we knew about Michael’s condition, and how to give him the best chance at living an independent life, was turned upside down.

Around age four, we started to notice that Michael’s developmental progress had stopped and, in many ways, he was regressing.  He became less talkative, developed verbal tics, and made eye contact less often.  He would obsess about movie videos, ceiling fans, and where we placed his food on the plate.  We would attend social gatherings hosted by the local Down syndrome support organization, and notice that he was socially different than most of the other children.  He didn’t play or interact with his peers the way a typical child with Down syndrome did.

During family vacations or visits with friends and relatives, Michael would be irritable and disruptive.  He would be violent toward other children, grabbing their necks, hitting them in the face or pushing them to the ground.  We were always being told that people with Down syndrome were so lovable and good-natured.  Why wasn’t that the case with our son?

Around age 5, we started raising concerns about Michael’s developmental issues with his pediatrician and pediatric neurologist, and told that people with Down syndrome have varying degrees of the disability.  During one medical visit, we were told “so what if he had autism, what difference would it make?”  One neurologist actually treated him for Attention Deficit Hyperactivity Disorder.

At about age 8, we brought up our suspicions about autism withMichael’s teachers and, to our surprise, they acknowledged the possibility.  We were referred to TEACCH, a group at the University of North Carolina Medical School in Chapel Hill which works with individuals with autism spectrum disorders and their families by providing clinical services, training teachers and care providers, and conducting psychological, educational, and biomedical research.

The initial screening determined that Michael met the criteria to be tested, and we were put on an 18-month wait list to be evaluated for autism. He was finally tested around age 10. The conclusion was that Michael had moderate autism, and that autism – not Down syndrome – was his primary disability.

We were advised to change the way we think about Michael’s disability and how to plan for him medically, socially and educationally.  After having been encouraged to put Michael in inclusive educational, social and family situations where he was continuously failing, we now know that a self-contained environment was best.  The medicines he took and the way his medical providers approached his care significantly changed.  With the dual diagnosis, he became eligible for supportive services from the State, and his school IEP was revised to emphasize more life skills and social goals.

The dual diagnosis and subsequent changes in the way we approach Michael’s disability have not alleviated his life challenges.  In fact, as he has grown older, those challenges have only increased.  But the diagnosis has provided relief to our family because we now understand him better.  We know that transitions are hard and social situations are so difficult for him, so we know how to plan for them.  And I am no longer constantly frustrated and angry with his inability to do simple tasks.

Having more realistic expectations about his progress and goals in life has actually led me to dream about someday starting a business together when Michael finishes school and I retire.

Disability Advocates Press Case for ABLE with Congress

February 16, 2012 5 comments

Autism Speaks joined with advocates from the nation’s other leading disability organizations today to make the case before Congress for ABLE—a bill that would allow families raising children with disabilities to save tax-free for their future needs.

The briefing was organized by Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), and Cathy McMorris Rodgers (R-WA) all cosponsors of HR.3423, the House version of the Achieving a Better Life Experience (ABLE) Act.  A panel of disability experts, including Stuart Spielman, senior policy counsel with Autism Speaks, addressed the briefing.

The Achieving a Better Life Experience Act would level the playing field for individuals with autism (and other disabilities) and their families to save for disability-related expenses. Just as families can put away savings in tax-exempt accounts for children to go to college, the ABLE Act would allow such accounts for individuals with disabilities to cover their future education, housing, transportation and related expenses. ABLE Accounts would resemble existing 529 college savings plans and would supplement, not replace, benefits provided through Medicaid, private insurance or employment.

Spielman noted the 600 percent increase in the prevalence of autism over the past two decades and the financial hardship encountered by many families caring for loved ones with autism. The ability to plan for the future needs of loved ones with autism would offer another resource for some families, he said.

John Ariale, Rep. Crenshaw’s chief of staff, said the bill was drafted so that SSI and Medicaid benefits would not be negatively impacted by opening an ABLE account.  If the account balance reaches $100,000, SSI benefits would be suspended, he said. SSI benefits would resume if the account balance drops below $100,000.

Crenshaw and Van Hollen said the bill enjoys strong bipartisan support in both the House and the Senate, and already has over 90 House sponsors.

Qualified disability expenses under ABLE would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living. Eligibility would extend to any individual who is receiving supplemental security income benefits or disability benefits under Title II of the Social Security Act, or “who has a medically determined physical or mental impairment, which results in marked and severe functional limitations” that can be verified by a physician.

Spielman noted that he and his wife were able to establish a traditional 529 account for their typically developing son  to save for his college expenses, but are unable to do so for their other son who has autism to save for his future life needs. The ABLE act would improve the quality of life for individuals with disabilities, he said.

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Are You ABLE to Support Tax-free Savings Accounts?

February 15, 2012 1 comment

Do you want to be “ABLE” to save tax-free for the future needs of your child with autism? Then come join Autism Speaks and advocates from 48 other national disability organizations tomorrow in Washington, D.C. for a Capitol Hill briefing on the Achieving a Better Life Experience (ABLE) Act. The briefing will be held from noon to 1:30 pm in Room B-339 of the Rayburn House Office Building.

The Achieving a Better Life Experience Act would level the playing field for individuals with autism (and other disabilities) and their families to save for disability-related expenses. Just as families can put away savings in tax-exempt accounts for children to go to college, the ABLE Act would allow such accounts for individuals with disabilities to cover their future education, housing, transportation and related expenses. ABLE Accounts would resemble existing 529 college savings plans and would supplement, not replace, benefits provided through Medicaid, private insurance or employment.

The briefing has been organized by Reps. Ander Crenshaw (R-FL), Cathy McMorris Rodgers (R-WA) and Chris Van Hollen (D-MD), all cosponsors of HR.3423, the House version of ABLE. A panel of experts, including Stuart Spielman of Autism Speaks, will address the briefing.

According to a Harvard School of Public Health study, the cost of caring for a person with autism will exceed $3 million over their lifetime. Providing care for adults with autism is often far more expensive than for children, yet there are fewer funding resources. As more and more children with autism age to adulthood, their families are growing increasingly frustrated over how to plan for their future. The need for new resources to provide them with necessary care and services is imperative.

Qualified disability expenses would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living. Eligibility would extend to any individual who is receiving supplemental security income benefits or disability benefits under Title II of the Social Security Act, or “who has a medically determined physical or mental impairment, which results in marked and severe functional limitations” that can be verified by a physician.

Autism Speaks Endorses ABLE Bill Creating Tax-free Savings Accounts

November 15, 2011 10 comments

Parents raising children with disabilities, including autism, could soon save for their futures with tax-free “529” savings accounts without jeopardizing their eligibility for other benefits.

The new accounts would be authorized under the Achieving a Better Life Experience (ABLE) Act of 2011, which was introduced today in Congress with the support of Autism Speaks, The Arc, the National Down Syndrome Society and a host of other disability rights groups.

The ABLE Act, sponsored with bi-partisan support in the House by Congressman Ander Crenshaw (R-FL) and Congresswoman Cathy McMorris Rodgers (R-WA), and in the Senate by Senators Robert Casey, Jr. (D-PA) and Richard Burr (R-NC), would amend Section 529 of the Internal Revenue Service Code to allow individuals with disabilities and their families to deposit earnings to tax-exempt savings accounts. The funds could be used to pay for qualified expenses, including education, housing and transportation, and would supplement, not replace, benefits provided through private insurance, employment or public programs.

“This is important, common sense legislation that will provide an incredible financial boost to families affected by autism and other disabilities who are struggling to pay for critical services,” said Bob Wright, Co-founder of Autism Speaks. “If we allow families to save tax-free for college, it is only fair that they be permitted to save to meet the needs of all of their children.”

Qualified disability expenses would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living.

“According to a Harvard School of Public Health study, the cost of caring for a person with autism will exceed $3 million over their lifetime,” said Peter Bell, Autism Speaks executive vice president of programs and services, who spoke at a Capitol Hill press conference where the introduction of the bill was announced.

“Providing care for adults with autism is often far more expensive than for children, yet there are fewer funding resources. As more and more of our children with autism age to adulthood, our hands remain tied in planning for their future, said Bell. “The need for new resources to provide them with necessary care and services is imperative.”

Nora Fitzpatrick and Robert Stephens of Gaithersburg, MD, whose six-year-old daughter, Rory, has autism say the ABLE accounts could help then plan for a more secure future when Rory will join the rising tide of Americans with autism who enter adulthood without assurances of services or financial security.

“In the past four years we have seen huge strides in improvement as well as baby steps,” said Nora. “We’ve also seen behavioral issues pop up and health issues that have set Rory back. The uncertainty of everything is a huge part of the equation for us. The opportunity to start a 529 plan for Rory would be a great way to give us some certainty and comfort for the future.”

Learn more about the ABLE Act on autismvotes.org and ask your members of Congress to cosponsor the ABLE Act.

House Co-sponsor Rep. Ander Crenshaw (R-Florida) dicussed the ABLE Act in a House floor speech on Thursday, November 17.

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