Why Is the UCP Logo Purple?

Spirit DayIn honor of National Bullying Prevention Month and out of respect for the people with disabilities and their families who we serve who are also lesbian, gay, bisexual and transgender (LGBT), UCP will turn its logo purple for Spirit Day this October 16.

Millions of people in America have pledged to go purple on Spirit Day in a stand against bullying and to show their support for LGBT youth. Observed annually since 2010, individuals, schools, organizations, corporations, and public figures wear purple, which symbolizes ‘spirit’ on the rainbow flag. Find out more at www.gladd.org/spiritday.

Study on the Genetic Causes of CP Enrolling Children & Parents

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Study on the Genetic Causes of Cerebral Palsy (CP)

 

The CP Genetic Research Network is currently enrolling mothers, fathers and their children with CP in an international genetic study that aims to identify new genes that cause CP. In turn, these discoveries will lay the foundation needed to improve diagnosis and treatment for affected children. Participation is simple– simply allow them to collect a cheek swab from the comfort of your home.

If you would like to participate or receive more information, please contact Jessica, the CP Genetic Research Network study coordinator at kruerlab@sanfordhealth.org.

 
Click HERE for their study flyer. You can also learn more by checking out their Facebook page.

UCP Responds to Delay of Home Care Final Rule Enforcement

United Cerebral Palsy (UCP) is pleased to hear that the Department of Labor will delay enforcement of the final rule they issued tightening the Fair Labor Standards Act last fall for six months. The final rule significantly narrowed the “companionship exemption” to give nationwide minimum wage and overtime protections for in-home, direct support caregivers.

At the time the rule was issued, UCP made a statement warning of the serious potential consequences people with disabilities and their families faced. Many services provided by caregivers are reimbursed by Medicaid – which, in many states, does not allow for overtime. In these cases, the options for people with disabilities living in the community would be limited and result in more individuals winding up in costly institutions. We urged Medicaid agencies to set reimbursement rates that would enable caregivers to continue to provide the critical support people with disabilities need to live at home.

“We expect at this point that the Department of Labor will assess the potential harm this may cause for people with disabilities and their families. We are hopeful that the manner and timing of the enforcement protects both caregivers and the families they are serving,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “We want to see those caregivers fairly compensated for their work, but we don’t want that to come at the cost of someone else’s independence. We have come so far in helping individuals remain in their homes instead of being confined to institutions. It would be a shame if the unintended consequences of this rule unraveled that.”

 

 

Leader in Universal Design Field to Kick Off Design-athon

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John Salmen, AIA, CAE, is scheduled to kick off the UCP’s Life Labs initiative Enabled by Design-athon: DC Edition on Wednesday, November 5. The president of Universal Designers & Consultants, Inc. and internationally recognized leader in the universal design field, Mr. Salmen has specialized in barrier free design for more than 35 years, creating environments to be usable by people of all ages and abilities, to the greatest extent possible. He is one of the leading experts in the technical aspects of the Americans with Disabilities Act (ADA) and has authored several books including: Accessible ArchitectureThe Do-Able Renewable Home,Accommodating All Guests and Everyone’s Welcome.

He joins Adrienne Biddings, Policy Counsel for Google. Brett Heising of www.brettapproved.com and Maria Town, the influential blogger who created http://cpshoes.tumblr.com/. Also on tap is the 2013 DoSomething Grant winner, Diego Marsical. The speakers will offer “lightning” talks on accessibility and design for people with disabilities at the Great Hall at the Martin Luther King Memorial Library from 6:00-8:00 p.m., which will be followed by networking time at a happy hour at a local establishment to be determined. This event is the prelude to a two-day design workshop at Google’s D.C. offices on November 6-7 where teams 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, CareerBuilder, Sprint Relay, PCS Engineering, Sugru, the CEA Foundation, Tech Shop and Coroflot. Academic partners include Marymount University and the Cocoran School of the Arts & Design at George Washington, University. It has been featured on the Core77 Design blog and in the Tech Shop newsletter.

Get more information and register at http://ucpdesignathon.org/.

Engage Series Kicks off with Financial Education and Networking!

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IMG_3188On September 24, 2014, United Cerebral Palsy (UCP) and Student Veterans of America (SVA) kicked off their new educational and networking series, called “Engage: A Diverse Event Series,” with an evening filled with food, drinks, networking and financial education at the National Youth Transitions Center. As will other events in this series, this event welcomed youth and young adults with disabilities and young veterans with and without disabilities throughout the Washington, D.C. metro area. It featured a specific subject of focus (financial education) and addressed key social and educational components for the attendees.

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As The HSC Foundation’s signature program, the National Youth Transitions Initiative assists youth and young veterans with disabilities in creating and living a self-directed path to adulthood and employment. Through this initiative, the Foundation developed the National Youth Transitions Center and the Youth Transitions Collaborative, which serve as sponsors for the event series. “We hope that ‘Engage: A Diverse Event Series’ will not only provide useful information for youth and young veterans with disabilities, but also allow a welcoming atmosphere to connect and network with each other,” said Ryan Easterly, manager of the Foundation’s National Youth Transitions Initiative. “The financial-education event was a great start and we look forward to watching the series grow over the next few months.”

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Attendees were given various financial information and statistics and participated in interactive activities, led by representatives from TD Bank. “We were pleased to participate in the kickoff event of UCP and SVA’s Engage series,” said Mary Ann Francois, Vice President and Store Manager of TD Bank’s 20th & K Street location in Northwest Washington, DC. “So many of us work hard to make the most of our funds and resources and plan for the future. This, of course, is no different for young veterans and individuals with disabilities and we were all very excited to be a part of such an interactive and fun evening.”

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“At Student Veterans of America, we know how challenging the transition can be from the military to civilian life,” said John Kamin, Program Manager at SVA. “Through the Engage series, we’re showing our veterans that they are not alone in the journey. We are excited to be a part of it, and believe it brings many educational and networking benefits to those we serve, as well as offer the opportunity to connect with others who may share similar experiences.”

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The series blends well with UCP’s upcoming launch of its My Life Without Limits program, which has a large focus on the transitions in life for individuals with disabilities. “UCP understands the importance of supporting people with disabilities through transitions in life,” said O’Ryan Case, UCP’s Director of Membership and Public Education. “As will our My Life Without Limits program, the Engage series helps us to support these individuals by bringing information to everyone and helping to connect them with others who may share the same or similar interests and challenges. We thank TD Bank for helping us launch this series, as well as the National Youth Transitions Center and Youth Transitions Collaborative for supporting this project. It has been great working with SVA and we look forward to watching our series grow.”

 

Check out the video below to learn more about the event!

 

 

UCP and SVA look forward to the next event in the series, an “Adaptive Sports Networking Reception,” which will be held on October 21, 2014 from 6:00 – 8:00PM EST at the National Youth Transitions Center (2013 H Street NW, Washington, DC 20006) and feature representatives from Disabled Sports USA who will share their stories, answer questions and introduce the world of adaptive sports to attendees. Like all of the events in the series, it is free to attend and food and drinks will be provided. Please be sure to REGISTER HERE. Learn more about the series HERE!

If you have any questions, contact O’Ryan Case at (800) 872-5827 or ocase@ucp.org.

University Seeking Individuals with Cerebral Palsy for Research on Employment

 

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Are you not working but want to work?

Would you like to talk about your experiences with seeking employment?

Can you share 90 minutes to talk on the phone?

You will receive a $50 gift card to use wherever Visa or MasterCard is accepted for your time if you participate in the phone call for this study.

 

Background:

If the answer to these questions is yes, the Rehabilitation Research and Training Center (RRTC) on Employment of People with Physical Disabilities at Virginia Commonwealth University wants to talk with you! They want to talk with people who have cerebral palsy, including transition age youth, who are currently unemployed. Anyone between the ages of 18 and 64 are encouraged to participate! Transition age youth should be 18 years old to 24.

The RRTC is conducting focus groups for people with physical disabilities about their work experiences. They want to know from you what experiences you face when job hunting.

These focus groups will be held over the telephone. You will receive a toll free number if you agree to participate. Everything you talk about with the RRTC will be confidential!

While your participation will not help you find a job, your input is very important! The information that you provide will be very valuable in the development of RRTC resources on work for individuals with disabilities, their support systems, employers and policy makers. If you decide to participate, the consent process is easy and online at:

http://www.vcurrtc.org/focus/index.cfm

If you need any accommodation to participate or have any questions, please contact Grant Revell at wgrevell@vcu.edu or (804) 828-6989.

Love of Hockey Bonds NHL Player, Boy with CP

 

Beyond the Offseason,” a show featuring athletes, teams and coaches who give back to their communities in the offseason, premieres this fall with a highly anticipated episode featuring a blossoming friendship between a popular NHL player and a boy with cerebral palsy. The full clip of this episode debuts on You Tube today, just in time to help raise awareness on World Cerebral Palsy Day.

Host Lisa Varga captures the story of Liam Traynor, a 12-year-old boy with CP and a life-long love of hockey. Lisa and her production team, with the help of Mike Balkin and Power Plate brought Liam a donated exercise machine and reunited him with his idol and friend, Philadelphia Flyers player Michael Del Zotto.

Their bond over hockey is obvious, as is Del Zotto’s genuine affection for the young boy. While many athletes give their time and money to help fans with disabilities and hardships, Del Zotto makes a special connection with Liam, exchanging phone numbers and staying in touch via texts. They even argue a little over a call in a hockey game on TV.

Beyond the Offseason is a show designed to shine a positive light on athletes who make a difference. The program was inspired by Lisa Varga’s brother Shane, who is a two-time cancer survivor. Miss Varga is a veteran actor, producer and host with film and TV credits such as Showtime’s Emmy-award winning series “Homeland”, NBC’s “Game Time: Tackling the Past” and “Marley and Me.”

For more, go to www.BeyondTheOffseason.com or follow Lisa and the show on Twitter: @TheLisaVarga, @TheOffseason1