Congress Passes ABLE Act

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The U.S. Senate passed the Achieving a Better Life Experience (ABLE) Act of 2014 by a vote of 76 to 16 late Tuesday evening, agreeing with the House of Representatives that the bill should become law. President Obama is expected to sign the bill soon.

The ABLE (Achieving a Better Life Experience) Act allows individuals with developmental disabilities and their families to save money tax free for their disability service needs, and allows these assets to be exclude for purposes of eligibility to receive needed government supports including Medicaid, Supplemental Security Income (SSI), and Social Security Disability Insurance (SSDI). ABLE addresses barriers to independent living because individuals’ access to certain essential government funded programs can be lost once they establish a minimal level of income and savings.

Beginning in 2015, children or adults who acquire a disability before age 26 will be able to annually save up to the amount of the IRS gift tax exclusion, currently $14,000, and up to $100,000 total while remaining eligible for public programs such as Medicaid and SSI.  The ABLE Act will allow for similar certain individuals with disabilities and their families to maintain savings accounts similar to 529 saving plans for education.

Once the President signs the ABLE Act, the federal government will issue guidance on exactly how to set up and fund ABLE savings plans.

 

Accomplished Cross-Sector Leader Named UCP Chair

Effective October 1, United Cerebral Palsy’s Board of Trustees welcomed new members and several new officers to help lead the national nonprofit organization for people with disabilities and their families. UCP has more than 80 affiliates in the U.S. and internationally.

Gloria Johnson-Cusack

Gloria Johnson-Cusack was elected as chair after more than a decade supporting the UCP network, and brings to  the national board more than 20 years of deep, cross sector experience. Currently, she serves as Ex

ecutive Director of Leadership 18, an alliance of Chief Executive Officers (CEOs) responsible for leading some of the country’s largest and most well respected charities, non-profits and faith-based organizations. Member organizations serve over 87 million people annually and represent $59 billion in total revenue. She also is a board member of the Firelight Foundation which supports children and families affected by HIV/AIDS in Africa.

Previously, Johnson-Cusack served as a Senior Vice President at GMMB, a D.C.-based strategic communications and advertising firm focused on cause marketing. In this role, she advanced issues on behalf of key nonprofit organizations and foundations. In the public affairs arena, Johnson-Cusack served as Director of the Office of Congressional Relations at the Peace Corps, Special Assistant to the President in the White House Office of National Service, and Director of Constituent Relations at the Corporation for National Service. She was Chief of Staff for the D.C. Office of the Inspector General and was policy advisor to Congresswoman Eleanor Holmes Norton and Senator Albert Gore, Jr. 

In 2005, Gloria led the strategic and creative team responsible for developing UCP’s “Life Without Limits” brand identity to enhance the international positioning of the organization. She also worked with UCP leaders to develop the strategic vision and plan for National Big Sky Visioning Sessions and related outreach to explore ways communities can work together to integrate people with disabilities fully into the fabric of society. Most recently, she helped lead the strategic planning committee which advised about the future direction and business model for the national office and conducted related outreach to affiliate CEOs and their board members to invite input.

Her expertise will add to the talents and strengths brought by new Vice-Chair Eric Hespenheide, who retired with more than 25 years of financial experience as a senior partner Deloitte & Touche, LLP and new Secretary Pamela Talkin who is the first woman to serve as Marshal of the Supreme Court of the U.S. overseeing the security and operations of the Supreme Court building. They join Melvin “Chip” Hurley who has over 30 years of healthcare and management experience in accounting, auditing and consulting. Each officer was serving as a trustee before being elected.

“I am thrilled to take on this new role leading one of the most outstanding boards I have ever encountered. They are passionate and laser-beam focused on smart strategy. Each of us will draw from our strong, diverse perspectives to advance the vital work of the UCP network that helps so many people world-wide.”

“UCP is incredibly excited to see Ms. Johnson-Cusack take this key position on our board,” said UCP President and CEO Stephen Bennett. “Her knowledge of the UCP network, her insight into how nonprofits can and should work and, most important, her vision will be critical to continuing the strategic changes which began under Woody Connette’s leadership. 

New members of the Board include Seth Harris, Pablo Chavez and Ouida Spencer as trustees. For more information about the board including biographies for all members, visit www.ucp.org/about/board

Austin’s Journey

The following is a guest post from Jenny Schmit, a physical therapist and researcher at Cincinnati Children’s Hospital Medical Center who works with a client named Austin. Read the story of Austin’s personal journey from frustration to celebration below:

“I work primarily with children who have Cerebral Palsy (CP).  Through work, I have had the privilege of meeting a young man named Austin.  Austin is 17 years old and lives in Batavia, Ohio.  Images of his brain suggest that he had a stroke when he was in utero.  He has hemiparetic CP.  Austin plays the computer and watches television.  He is a teenager and like lots of them, he spends an awful lot of time sitting still.   Austin

Although the damage to Austin’s brain will not get worse, his mobility and function can continue to deteriorate. Unwelcome changes to bone, muscle, and the cardiorespiratory system can occur over time when patients with disability aren’t proactive. One of Austin’s best defenses is also a hot topic in public health today. Research suggests that decreasing the amount of time we spend being sedentary, and increasing the amount of time we spend engaged in physical activity is critical for everyone, but especially for children with CP!

At a clinic visit in April of 2014, Austin felt frustrated. Physical fitness testing at school meant running a mile, and it didn’t go well.

He seemed to be compelled to do something about it. Austin set an admirable goal; he announced that he would like to run, in its entirety, a 5K race.  He scoured the internet for his just right challenge, signed up for the Panerathon, in Mason, Ohio, which raises money to fight hunger (probably because the race includes a giveaway of free Skechers). He named the team that would support him the CP Warriors.

He worked tirelessly over the summer.  He spent Mondays, Wednesdays, and Fridays with outpatient physical therapists at Cincinnati Children’s.  He strengthened legs. He grew better abdominal muscles than most of the healthcare professionals who treat him. He practiced coordinated activities like skipping and jumping.  He walked on a treadmill.  He did silly things, like moving rings from one cone to the next with his foot or kneeling on top of big therapy balls without holding on.  And he ran.  He ran around the Medical Offices Building and met the people who live in the neighborhood.  He ran up and down the big hill that the Hospital lives on and doctors and nurses clapped for him.  He ran in the August heat and sometimes in unexpected rain. Every weekend, he ran around the trail at Lunken Airfield, with a team of volunteers from the hospital and CP Clinic and people who believed in him.  He ran with a dog, and sometimes a donated iPod shuffle and Rodney Atkins.  He ran while he talked about zombies and how to beat Halo and fried pickles.  He never ran without smiling.  His Mom filled a scrapbook with photos because while he ran, she and her husband filled up with pride.

Two things happened during this journey.

One is that Austin grew.  He threw up during a mile run in physical education class.  On Sunday, September 21, he will finish the 5K faster than many individuals without physical disability.

The other is that the people around him grew.  We thank him for his inability to perceive hurdles.  We thank him for reminding us that few things are out of the realm of possibility.  And we thank him for reminding us to carry ourselves forward (unless we are practicing walking backwards).

Please share his story.

If you live near Mason, Ohio, please come to applaud him at his finish line this Sunday.

And for heaven’s sake, can someone please make sure he gets a pair of size  9 shoes?!”

 

UPDATE: Austin completed his run! Watch updated news coverage here.

New Film Features Comedian with Cerebral Palsy

A new film released on Friday features Josh Blue, a stand up comedian with cerebral palsy known for winning NBC’s Last Comic Standing competition in 2006 and subsequent comedy specials on Comedy Central and Ron White’s Salute to the Troops on CMT. Dat Phan, who also competed to be a Last Comic Standing also stars.Josh Blue

“108 Stitches” follows a baseball team with one of the longest losing streaks in college history as they come to the realization that the school, led by the corrupt and unethical President of the University, has plans to disband the entire program.  Hilarity ensues as the misfits have just one afternoon to execute a plan to fill the stadium, sign the top recruit on the planet, and help send their coach out with a bang. Josh Blue stars as an unlikely pitcher who spins wild throws in just about every direction but the batter’s.

Affiliate UCP of Los Angeles, Ventura and Santa Barbara Counties was invited to the exclusive Hollywood premiere of the film this week and got a chance to speak with Josh Blue and the producers of the film about the character.

“Josh Blue said what he most liked about the character is that he is treated equally.” said Amy Simons, Chief Development Officer of UCP of LA. “Pretty much every one in the film is made fun of and Josh’s character is no exception. He’s not singled out because of his disability.

Order your copy now through this link and the producers of “108 Stitches” will donate a portion of the proceeds to UCP to help provide services support for people with disabilities.

Enabled by Design-athon Happening This Fall

Design-athon Revised Header
United Cerebral Palsy is bringing you another great event this fall! Sign up now to attend Enabled by Design-athon: D.C. Edition November 5-7. UCP’s Life Labs initiative is hosting this dynamic event to encourage innovation by designers, inventors, hackers and makers for the benefit of people with disabilities.

Spread the word to those you know who have the big ideas and perspective that have made three previous events in London, D.C. and, recently, Sydney, Australia, such a success. We’re looking to bring together teams of dreamers, including people with disabilities, to design and prototype accessible products which provide innovative solutions for the everyday challenges faced by people with various disabilities.

We’ll kick things off Wednesday evening, November 5 at the Great Hall at the Martin Luther King Memorial Library, where the public is invited to network and hear from keynote speaker Adrienne Biddings, Policy Counsel for Google. Adrienne will bring her expertise in making communications media accessible, diverse and responsive to the needs of all segments of the community. Other speakers include Brett Heising of www.brettapproved.com and Maria Town, the influential blogger who created http://cpshoes.tumblr.com/ and representatives from iStrategy Labs. Also participating is the Corcoran/GWU School of Arts + Design.

Thursday, November 7, begins the two-day design workshop at Google’s D.C. offices where team will compete to come up with the best design. A $25 registration fee is required for the workshop, however, the Wednesday evening event is free and you do not have to participate in the full workshop to attend (registration is required and space is limited)

“This is an opportunity for designers, technologists, engineers, students, caregivers and people with disabilities to collaborate and learn from each other how to use human-centered universal design concepts to solve every day challenges,” said Marc Irlandez, Director of Information, Technology and Life Labs at UCP. “We believe good design goes a long way towards helping people live as independently as possible by making day-to-day tasks just a little easier.”

The event is sponsored by Google, Sprint Relay, PCS Engineering, Sugru and the CEA Foundation.

Registration opens today! Get more information at http://ucpdesignathon.org/.

Google LogoSprint RelayCEA-Foundation-Logosugru-a496657ae9f8fc8b31a1207b5202ff56pic0_44331

New Event Series for Young People with Disabilities and Young Veterans

United Cerebral Palsy (UCP) and Student Veterans of America (SVA) announce a unique partnership that will allow both young adults with disabilities and young veterans to network and increase engagement and collaboration. The project was developed with the support of the National Youth Transitions Center and the Youth Transitions Collaborative (www.thenytc.org).SVA Circle JPEG

An educational series of events called “Engage: A Diverse Event Series” will take place between September and December 2014, covering finance, adaptive sports, disability and military history and wrapping up with a social evening of networking. The events will be open to youth and young adults with disabilities from ages 14-26 and veterans under the age of 35 in the Washington, D.C. metro area. Each event will have a specific subject of focus, addressing key social and educational components and offer a welcoming atmosphere.

The events are free but space is limited for each event, so registration is required. The hope is that by bringing together people from different backgrounds, they will be able to better learn from one another about their individual and shared experiences. Overall, the event series is designed to be a basis for further collaboration within the D.C. area, and serve as venue to further spread best practices.

EVENT DETAILSAdaptive Sports

Wednesday, September 24 from 6:00-8:00 p.m.

National Youth Transition Center at 2013 H Street NW in Washington, D.C.

Financial Education
Network and share your challenges with optimizing financial resources with financial planning experts including representatives from TD Bank, who will offer advice and guidance through interactive budgeting activities. Food and drinks will be provided!


Tuesday, October 21 from 6:00-8:00 p.m.

National Youth Transition Center at 2013 H Street NW in Washington, D.C.

Adaptive Sports
Continue to network while learning about adaptive sports with representatives from Disabled Sports USA who will share their stories, answer questions and demonstrate equipment. Food and drinks are provided!


Wednesday, November 18 from 1:00-3:00 p.m. 

American History Museum at 14th & Constitution Avenue, NW.

Disability and Military History
Hear from the curatorial staff of the Division of Armed Forces History and the Division of Science and medicine at the Smithsonian Institution Accessibility Program followed by behind-the-scenes tours of collections of armed forces and disability history. Snacks and drinks will be provided. And, of course, enjoy networking!


Wednesday, December 10 from 6:00 – 8:00 p.m.

National Youth Transition Center at 2013 H Street NW in Washington, D.C.

Networking Reception
Enjoy an evening filled with networking, food, beverages and music, as we wrap up our event series.

 

REGISTER BY CLICKING HERE!

 

Please contact O’Ryan Case, UCP’s Director of Membership and Public Education at (202) 973-7125 or ocase@ucp.org if you have any questions.

UCP’s STEPtember Challenge Begins Today!

10,000 Steps Daily Minimum

 

2,000 participants across the U.S.       are taking 10,000 steps a day from September 3-30                 in support of UCP.

United Cerebral Palsy (UCP) is pleased to announce the launch of the third annual STEPtember fundraising event today, formerly known as the World CP Challenge. STEPtember is an international health and fitness event that aims to raise awareness and support for individuals with disabilities and their families.

From September 3-30, STEPtember participants will get active while supporting a great cause. Throughout the event, more than 5,000 teams worldwide will challenge themselves to take 10,000 steps a day. Each of the steps—or bike rides, yoga classes, or physical therapy sessions, as nearly any activity can be counted—will propel the teams up virtual mountains and track their progress. Teams can compare their fundraising and step activity against others from around the world, racing each other up the seven tallest mountains and spurring their efforts to new heights. Together, the teams will help to raise critical support for the nearly 180,000 individuals with disabilities that UCP serves each and every day.

Already, more than $115,000 has been raised in the U.S., and well over $1 million internationally through thousands of participants. 

“UCP is very excited to kick off this year’s STEPtember event! This month promises to be an incredible, worldwide effort to raise awareness and support for people with disabilities. Steptember is such a great way for anyone, regardless of ability, to get active and truly impact our organization in the process,” said Stephen Bennett, President and CEO of UCP.

“Our family is personally affected by disability and we know first-hand what perseverance can accomplish. Joining in the STEPtember campaign, like a of Team Hoyt, a father-son racing duo who have volunteered to be UCP’s STEPtember ambassadors this year. Team Hoyt

Here’s how to get involved in the STEPtember Challenge: 

1) Learn More –  Check out the FAQ section on the STEPtember website, learn more about the communities that UCP serves, and understand how to get started!

2) Register Today – It’s not too late to get involved! Register today at www.steptember.us and we’ll connect you with a local affiliate that can provide an event packet and information to jumpstart your involvement.

 

3) Donate Now – Even if you don’t want to take the challenge and register, support the cause by donating to the UCP National team. We’re aiming to raise $10,000. Every dollar donated will provide critical funds to sustain community programming, and purchase much needed equipment for individuals with disabilities and their families.

Steptember will culminate on October 1st with World Cerebral Palsy Day, a global innovation project to change the world for people with cerebral palsy. 

An Open Letter to Weird Al Yankovic

Dear Mr. Yankovic (may we call you Weird Al?),

Thanks for your catchy summer hit “Word Crimes.” We were having a lot of fun bopping to the beat of this parody of “Blurred Lines” and laughing along with your clever lyrics. That is until we reached the final chorus, where you sang “cause you write like a spastic.”

You may not be aware, but “spastic” can carry a very un-funny meaning for people born with cerebral palsy (CP) and other disabilities and their families. We understand you were poking fun at people who don’t use proper grammar by implying that they lack intelligence. There are only so many ways you can say that – “moron,” “clown,” “stupid” – so we understand you have to reach a little for more examples.

But, you should know that “spastic” is a term that describes certain aspects of CP and it has no bearing at all on a person’s intelligence. The term is far too often used to insult people with disabilities, instead of simply describing a condition. Similarly, the word “retarded” long ago moved from the realm of clinical jargon to disrespectful slang for someone with an intellectual disability. It is now rejected as being not only outdated, but also incredibly offensive. When you go on to say “get out of the gene pool, try not to drool” in your song, you are portraying people with disabilities (inaccurately) as somehow less intelligent and less valuable than other human beings.

Here are some facts about CP that you might want to know: there are 17 million people in the world who have CP; it is estimated that 1 in 323 children is born with CP (that’s a pretty big fan base); CP results when an injury to the brain occurs before, during or after birth; and CP can affect mobility, speech and other functions specific to which part of the brain was injured. While people with CP sometimes have other co-occurring disabilities, including intellectual disabilities, it doesn’t automatically mean that they lack intelligence (or a good grasp of the English language). And, it certainly doesn’t mean that they are not deserving of your respect.

Weird Al, we hope you will take this into consideration when you’re writing. We all love a  good laugh,but not at the expense of people with disabilities and their families and friends.

Thank you,

United Cerebral Palsy 

Thank You to Our Champions in Congress!

 

UCP has long relied on several advocates in Congress to help us push for positive Federal policies for people with intellectual and developmental disabilities. Some of these champions – such as Senators Tom Harkin, Jay Rockefeller, and Carl Levin and Representatives Henry Waxman, George Miller, and John Dingell are retiring and passing the baton to the next generation of legislators. 

This video honors those retiring Members of Congress for their legislative successes on behalf of people disabilities and was jointly developed by six national organizations – The Arc, American Association on Intellectual and Developmental Disabilities, Association of University Centers on Disabilities, National Association of Councils on Developmental Disabilities, Self-Advocates Becoming Empowered, and United Cerebral Palsy. 

On behalf of UCP, we would like to say “thank you” to these champions and we look forward to working with other Senators and Representatives who would like to continue their work to improve the lives of people with disabilities and their families. 

 

Former Deputy Secretary of Labor, LinkedIn VP, Business Leader to Contribute to UCP’s Mission

 

Seth Harris

Seth Harris, Former Deputy Secretary of Labor and Cornell Distinguished Scholar

United Cerebral Palsy (UCP) elected ten members to its Board of Trustees during its 2014 Annual Conference in Nashville, Tennessee including three members new to the organization. Seth Harris, former U.S. Deputy Secretary of Labor, Pablo Chavez, LinkedIn’s Vice President of Public Policy and a parent of a son with a disability, and Ouida Spencer, a long-time UCP advocate and volunteer from Georgia will join seven re-elected members to lead UCP into the future.

“Our Board of Trustees plays a critical role in guiding the UCP network forward, and we are honored to welcome such a talented and knowledgeable group onto the Board this year. We are very grateful for each new member’s dedication to our mission of enabling a life without limits for people with disabilities and their families, and look forward to their contributions,” said Stephen Bennett, President and CEO of United Cerebral Palsy, in announcing the selection of Trustees.

Profiles of the newest board members are below. To view the complete list including re-elected trustees, please visit ucp.org/about/board.

Seth Harris served four and a half years as the US Deputy Secretary of Labor and six months as Acting US Secretary of Labor and a member of President Barack Obama’s Cabinet before becoming a Distinguished Scholar at Cornell and joining Dentons’ Public Policy and Regulation practice. He did some consultancy work for UCP in 2007 and 2008, most notably as the designer of the programmatic work that launched UCP’s Life Labs.

While at the Department of Labor, Harris contributed to our country’s economic recovery and millions of Americans returning to work. In 2007, Harris chaired Obama for America’s Labor, Employment and Workplace Policy Committee, and later founded the campaign’s Disability Policy Committee.  He oversaw the Obama-Biden transition team’s efforts in the Labor, Education and Transportation departments and 12 other agencies in 2008.

Also, Harris was a professor of law at New York Law School and director of its Labor and Employment Law programs as well as a scholar of the economics of disability law and topics.

Pablo Chavez is Vice President of Global Public Policy for LinkedIn and the parent of a young son with cerebral palsy. From 2006 to early 2014, Chavez was a member of Google’s public policy and government affairs team, where he held several leadership roles developing and executing advocacy initiatives promoting access to the Internet and other technologies.

Before then, Pablo worked in the US Senate as a counsel to Senator John McCain and to the Senate Commerce Committee. Pablo serves on the Board of Trustees for St. Coletta of Greater Washington, which is dedicated to assisting children and adults with special needs, and serves as a board member and in advisory capacities for a number of technology-related organizations. A graduate of Stanford Law School and Princeton University, Pablo lives in Washington, DC with his wife and two children.

Ouida Spencer has been a licensed Real Estate Broker and consultant in Georgia and South Carolina for over 17 years.  Previously she worked in banking as Senior Vice President with SunTrust Bank and Group Vice President with Decatur Federal.

She specializes in locating homes that can be modified for individuals with special needs and has worked to acquire properties for over 500 people who required special accessibility modifications. Spencer is a tireless advocate for housing rights of individuals with disabilities.

Spencer was nominated to UCP’s Board of Trustees after years of dedication to UCP affiliates in her area and her other volunteer efforts. Spencer is a Member of the DeKalb Association of Realtors, Chairman of the Board of Directors of UCP of Georgia, Member of the UCP Master Board of Directors South Florida/Georgia/South Carolina, Vice Chairman and Member of the Board of Directors UCP of South Carolina and a member of the UCP Affiliate Services Committee. Other volunteer activities include serving on the Board of Trustees of the Rosebud McCormick Foundation for over 26 years.

Spencer is the Past State President of the Georgia Federation of Business and Professional Women Club’s, Inc.  She is currently serving as Treasurer of the Decatur BPW and was recently elected to the Family Extended Care, Inc. board.

A graduate of Georgia State University where she received both her BBA and MBA degrees, Spencer lives in the Atlanta metropolitan area.