Who Cares About Ken Jennings? A Teachable Moment

Yesterday, former Jeopardy champion and aspiring TV host, Ken Jennings made a highly offensive comment on Twitter. Many of his 177,000+ followers reacted with harsh criticism and several media outlets soon picked up on the storm, reporting on his comment and the ensuing furor online.Ken Jennings Screenshot

So who really cares about Ken Jennings or what he said. He is, after all, a self-described “fixture of yesteryear.” We could jump on the bandwagon and bash Ken for being none-too-bright when it comes to sharing your private thoughts on such a public forum, especially if you’re trying to build a fan base to launch another 15 minutes of fame. We could point out all that is wrong with this statement, but that’s hardly necessary. Those 41 characters pretty much say everything you need to know (as does the fact that almost 23 hours hence, after plenty of criticism, he has not attempted to remove the post.)

But for organizations like UCP, which have spent the better part of 65 years advocating to give people with disabilities the opportunities they need to fully participate in their communities and in our society, this is a teachable moment.

The lesson here is that for all of our progress – greater accessibility to public places, innovations in technology to make day-to-day life easier, reducing discrimination in education, housing and the workplace, more and better public services and support – we really haven’t accomplished much if people with disabilities are still regarded as “less than” people without disabilities.

It is that attitude that is so evident in Mr. Jenning’s post. He’s telling the world that using a wheelchair somehow diminishes what he would consider an otherwise attractive person.

That is sad. But it’s not sad for us. It’s only sad for Mr. Jennings and others like him who have not yet understood that disability doesn’t mean diminished. If we can use this unfortunate moment to make people stop and think for a moment – and possibly check their own attitudes – then we have a truly teachable moment. Maybe Mr. Jennings has given us a gift and offered us some knowledge about the prejudices that still lurk under the surface.

I’ll take “Enlightenment” for $1000, Alex.

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.




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.

Remembering a Great Camper, Volunteer, Staff Member and Brother

Guest post by Bill McCool, Executive Director of UCP of Delaware


Petey & Mary 2

Peter Collins was a camper, volunteer and staff member for United Cerebral Palsy of Delaware’s Camp Manito.  Mary Arden Collins, who is a singer/songwriter in Los Angeles, recently produced a video about her wonderful brother Pete, who passed away in May of this year.  The video tells a great story about Pete, who found ways, both big and small, to give back to the camp and the people he loved.   

Pete started at Camp Manito when he was three years old.  His mother put him on the bus that came to pick him up at their house, but she secretly followed the bus to make sure that he was going to be ok.  It must have worked out, because for the next 35 years, Pete came to camp every summer.

Mary Arden also has her own camp memories.  As a teenager, she became one of the camp volunteers and eventually a counselor.  Mary Arden pursued a music career, but she has always been proud of her association with UCP’s Camp Manito.  When she would come back to Delaware, she would come to the camp and perform for the kids.  She and Pete, who played a bodhran drum, performed together.

Pete & Mary edit.jpg

There has always been a sense of family at UCP’s Camp Manito, probably because we have watched so many children grow up here.  As small children, they are campers; as teens, they become volunteers; as high school and college students, they become staff; as adults, they move into the community and they find ways to give back to the program and to the kids who are following after them.  And while the progression is not the same for everyone, there is a feeling of belonging and sharing that envelops all of the staff, volunteers and campers.

When Peter was too old to attend as a camper, he became one of the camp staff and then a volunteer.  His annual position here was camp receptionist.  He answered the phone, directed callers to UCP staff and took messages.  In the morning, he greeted campers and their parents when they arrived; in the afternoons, he used our public address system to call campers to the lobby when their parents came to pick them up.  He chased down staff to give them their messages.  During the off season he stayed in touch with his camp friends, calling them and talking about good times at camp, telling them he was anxious for summer’s return. He was here every June; he always came back to take care of the phones and do his job.  He was good at what he did, and he was reliable; we always knew we could count on him.

Like any charitable organization, UCP has had its up and down periods, and during one down period, UCP had to cut back the number of weeks the camp could be open from six to four weeks.  Pete made a decision that changed the course of that summer for all of the children who were here.  He donated enough money to help UCP stay open for an additional week of camp.  His love for the camp, our campers, and the work he was doing meant a great deal to Peter.  He gave his donation happily, and he was here that week doing his job as usual.  His donation meant others could enjoy what he had always enjoyed – a longer summer together with the friends they loved.

Pull together any group of adults who attended camp when they were younger and the stories you will hear will amaze you.  It’s the power of camp; it’s the power of their shared experience.  They have an appreciation for the program and a love for the people they grew up with.  Peter was that person too.  He showed his deep feelings for our children and the camp that particular summer and every summer he was here.  We lost Peter this year, but he will never be forgotten by the folks who all shared the same love he had for Camp Manito.

Please take a few moments to watch and hear the video put together by Mary Arden.  The song was written by Mary Arden and Pete was her inspiration.

Bill McCool

 In Memory of Peter Collins, by Mary Arden


Navigating the Worlds of Education and Employment with a Disability

Special guest blog post by Maureen Marshall, Electrical Engineer


Maureen Marshall 3

Having cerebral palsy (CP) definitely has its challenges and there is no denying that, but there are also so many possibilities for achievement in both education and where that education leads you down your career path.  I was diagnosed with CP at the age of 2 and, though my parents were told I may never attend regular classes in school or actually ever learn to read and write, I proved everyone wrong and successfully attended regular classes– even advanced classes because I pushed myself to prove everyone wrong and excel.  I graduated, not once but 3 times: I graduated from high school; I have a Bachelors of Science degree in Electrical Engineering, a Master of Business Administration degree in Technology; and a Certificate in Strategy and Innovation from the Massachusetts Institute of Technology (MIT).


Believe it or not, the biggest challenge I had in school was with the teachers.  While I was in elementary and middle school, I was forced out of orchestra class because I did not hold the bow correctly and I failed typing because I did not type with both hands.  In both cases, neither teacher was willing to recognize that I physically could not do what they wanted me to do, nor even the fact that I was able to succeed through modifying the way I performed the task.  Not having full use of my right side, I held the bow with a firm grip; no pinky finger up and I typed with one hand; not both. 

As I moved through high school and college, I learned to not register for classes that would be a physical challenge for me and cause further pass/fail issues, such as gym and swimming classes.  It was not worth the fight with the school administrators to get them to accept my limitations.  Instead, I enjoyed sports with my friends, who accepted these limitations and took swimming classes on my own where there was no pass/fail criterion.  When it came to choosing a field of study in college, I recognized that I would need a career that focused on my strengths and one that I could advance in.  I always loved and did well in math and science courses, so engineering was the path I chose to take– which I have had great success. Engineering allows me to use my knowledge and experiences, with little or no physical activity. There are so many different engineering positions and fields to chose from– one can definitely find one that fits not only their strengths but their abilities.  I have also found that industry is very accommodating to those with disabilities and will make every effort to ensure all obstacles are removed.  For instance, if you chose to work in a manufacturing plant, where getting around can be difficult, they have been known to install elevators or even mark walkways to allow wheelchair accessibility.

Maureen Marshall 2

I’ve experienced some interesting moments from the time I graduated to now– and one I’ll never forget is my first interview!  During the middle of the interview, I had to leave the room to get a form at the request of the person interviewing me and, when I came back to the room, I landed flat on my face.  For some reason, from the time I left the room to re-entering it, someone had placed a 2×4 board across the bottom of the doorway, which I tripped over when walking back into the room.  Mortified and embarrassed, I decided to get up as quickly as possible, gain my composure, laugh (instead of cry) and simply comment, “Well, that wasn’t there before!” and move on with the interview like nothing happened.  To this day, I will never know if that was an interview tactic or a simple mistake of someone working in the office area.  However, I am happy to say I got the job and I think a lot of that had to do with how I handled that situation! 

I have never called out my disability to any potential employers or future colleagues and over the years very few have inquired, even though it is very noticeable.  What worked for me, is taking on every situation, like there is nothing limiting me, and simply ‘adjust’ as needed.  An obstacle I have to overcome on a daily basis is when I am with a group heading either to a meeting or out to lunch and they head for stairs.  I will simply let them know to meet me by the elevator or ask where I could meet them after I find the elevator.  I have to say I have been very blessed with employers and colleagues that have never called out my disability either.  Do not get me wrong, there have also been a few challenging moments throughout the years too.  

Several years back, there was an incident where I was out of the country for a business trip. While at dinner with a group of colleagues, one of them decided to call me “Crip” (a term short for cripple).  I was shocked when I heard this reference and especially from a superior.  At first, I ignored what I heard, hoping I was mistaken.  However after he repeated it several times, I quickly stated in return, “I am sorry.  Are you talking to me?  Because if you are, I do not answer to that, nor does my disability change who I am and why we are here.”  Unfortunately for him, he continued to refer to me as “Crip,” even after my request throughout the dinner.  All I could do was continue to ignore him.  I was very surprised that the others around the table never participated nor tried to stop him right then and there.  However, once we landed back home and returned to work, he was fired on the spot because they had addressed their concerns with our Human Resources Department without me knowing– taking quick care of the issue. 

I have also had bosses that have treated me differently than others, not because of my performance, but because they were not comfortable with my disability.  In cases like this, I have learned it’s best to move on and get out from under them as quickly as possible– take actions in my own hands and find a new position.

Maureen Marshall 1

In today’s day and time, if one is treating someone differently– not promoting them, holding them back from situations or otherwise– it’s their problem and not yours! 

In the end, I am very proud to state that I am witness to the fact that the professional environment for persons with disabilities has improved over the last 20 years.  More and more buildings are accessible and employers are welcoming the diversity in the workplace.  Unfortunately, there will always be those that still need to be educated on acceptance of persons with disabilities.  The good news is that we are the change agents and it is up to us to teach them that those with disabilities are very capable of being high performers.

If I were to offer advice to students with disabilities who are interested in careers in engineering and technology, it would be– do not let anyone or anything stop you! 


Marshall is from Royal Oak, Michigan and has been married for nearly twenty years. She has three sons and has held a career as an Electrical Engineer in the automotive and defense markets for more than twenty years.

Social Security Disability Benefits: Can I Apply?

by Lisa Giorgetti, Community Liaison, Social Security Disability Help



Everyone is encouraged to live life without limitations, no matter who you are and what you face on a day-to-day basis. Just as many people encounter daily obstacles, the disability community has additional challenges to face, from going to physical therapy to paying dreaded medical bills. Health and other costs of living can certainly add up and put strain on your wallet. Social Security Disability benefits can help your family obtain some desired financial relief. Knowing all the facts and information about disability benefits helps better prepare you for the application process in order to file a successful claim.



Preparing for the Disability Application Process 

There are a number of steps to take in preparation for the application process. These steps will help ensure the success of your Social Security Disability claim.


Disability Benefits Programs

The first thing to consider when applying is to decide which program you’re eligible for, either Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI).

If you’ve been a member of the workforce and suddenly find yourself unable to complete any sort of work activity and receive income, you could qualify for SSDI. You need to have paid the correct amount of Social Security taxes, depending on your age, when you were working. http://www.disability-benefits-help.org/ssdi/qualify-for-ssdi 

But what if you haven’t had the chance to obtain enough work credits or if the SSDI payments aren’t enough? Then SSI could be your answer as it’s a need-based program. You will just need to prove that your assets and household income are below the Social Security Administration’s (SSA) threshold. Also, if you have a child living with a disability and you meet the asset and income limit, you would want to apply for SSI through the parental deeming process. http://www.disability-benefits-help.org/ssi/qualify-for-ssi


Determining Disability Under SSA Guidelines

No matter what disability benefits program you apply for, whether SSDI or SSI, you need to be classified as a “disabled” individual by the SSA. This means that your condition needs to be long-term, at least 12 months, or permanent that absolutely prevents you from performing any sort of work activity whatsoever.

The SSA also has published a “Blue Book” of medical listings with detailed criteria required to qualify for disability benefits as a result of a disabling condition. If your disability is listed in the Blue Book, you will just need to prove that you meet the requirements set forth. If, on the off chance, your condition isn’t listed, don’t worry. You will just have to prove that your condition meets the criteria of one of the listings or that it results in absolute inability to work. http://www.disability-benefits-help.org/disabling-conditions

For example, cerebral palsy is found in the Blue Book in Section 11.07 under neurological disorders. Since cerebral palsy is a long-term condition, your chances of receiving benefits can be likely. This is because cerebral palsy is considered by the SSA to be a “presumptive disability”. As a result, you may be able to: 

  • Start receiving payments, while the SSA reviews your application;
  • Receive these payments for up to six months during the application process; and
  • If SSA then denies your claim, you do not have to pay back the money sent to you.

Getting Together the Paperwork You Will Need

When getting ready to apply for benefits, you will need to show SSA proof of:

  • United States citizenship or legal residency in the US
  • Age
  • Living Arrangements
  • Medical Records
  • Income and Assets
  • Work History

Make sure to provide originals with your application, and keep copies to yourself (the only copies the SSA will accept are certified copies from the entity that issued them).


Meeting Eligibility Requirements 

As previously stated, each medical condition listed in the Blue Book has eligibility criteria that need to be met in order to be considered disabled. If you’re able to meet the requirements, you will need to prove to the SSA with proper documentation, such as doctor’s notes or observations from a therapist. 

In the example of applying with cerebral palsy, as an adult or child, the specific requirements vary:

For a child to be eligible to receive benefits due to cerebral palsy, the SSA will compare the child’s motor skills and abilities to those of children within the same age group. For example, if the cerebral palsy interferes with the ability to:

  • Take care of personal hygiene
  • Feed himself or herself
  • Participate in activities for children within his or her age group without assistance
  • Problems with one of the above, coupled with seizures, a low IQ for his/her age, and/or speech, hearing, or vision impairments
  • Using his or her hands, arms, and/or legs

For an adult applying for SSI or SSDI benefits due to cerebral palsy, they must keep in mind that in order to qualify for benefits, the disability has to affect the applicant’s activities of daily living. These activities include:

  • Walking
  • Standing
  • Seeing
  • Hearing
  • Speaking
  • Writing
  • Household chores

If your cerebral palsy interferes with these activities, then you have a higher chance of being approved for disability benefits.


The Application Process

There are many SSA field offices located throughout the country; so it should be easy to find a location that is close to you. However, you may apply either:

  • In person
  • By mail
  • By filling out an application online

 If you decide to apply in person, it would be better to call in advance to schedule an appointment, since sometimes the field offices are crowded and you may have to wait in line.


What Happens if Your Initial Claim is Denied?

If your claim is denied, no need to panic. There’s still a possibility to be approved for benefits. In fact, most people are denied when they first apply for benefits. No matter how tempting it may be, don’t simply apply again. Instead, use the appeal process. The denial letter will include the information about how to file an appeal. Make sure you appeal within the 60-day period provided for doing so. It’s also helpful to know that:

  • Some jurisdictions require a reconsideration process before you can get a hearing; while others will allow you to schedule a hearing without the reconsideration step.
  • The person who will be in charge of your hearing will be an Administrative Law Judge (ALJ)
  • The ALJ was not involved in your initial application process
  • Sometimes, a videoconference hearing will be allowed. If this is the case, the SSA will notify you beforehand.
  • The ALJ will ask you questions about your disability
  • A vocational expert may also be present and ask additional questions


What Can You Expect in Terms of Benefits? 

Once you’re approved for Social Security Disability benefits, you can expect to receive additional payments (beyond the initial presumptive disability payments):

  • Between four to six weeks from when you receive your notification of approval
  • On the first day of every month
  • SSDI benefits are based on the applicant’s work record and earnings while working
  • SSI benefits are independent on the applicant’s work record; so even if you have never worked, you can still be eligible to receive SSI benefits.


Should You Hire an Attorney? 

Disability lawyers and representatives can assist you throughout the entire process of applying for SSI or SSDI benefits. When initially applying for benefits, getting all of the paperwork together can be done by you or a loved one; so if you are comfortable getting that part of the process done without legal assistance, then you can do so.

However, if your benefits are denied and you have to go to a hearing, it would be best to appear with an attorney, since they will know which questions to ask you to better show the judge that you are entitled to benefits. 

You don’t need to worry about having to come up with the money to pay your Social Security Disability lawyer. Their fee is a percentage of the benefits awarded to you in the form of back pay. Also, you don’t have to worry that your funds will run out in order to pay for your lawyer, since, by law, they can only take up to 25% (up to a maximum of $6,000) of any past due benefits owed to you. 

Although the process can appear to be daunting, every year, thousands of people are able to get their benefits successfully. If you or your loved one lives with a disability, you have the option to apply for SSI or SSDI benefits. These are benefits you may be entitled to by law, and they can significantly alleviate any financial stress you may be experiencing. 


Lisa Giorgetti is from Boston, MA and is the Community Liaison for Social Security Disability Help where she works to advocate for disability awareness and assist people throughout the Social Security Disability application process. For more information about Social Security Disability assistance, visit http://disability-benefits-help.org or contact via email help@disability-benefits-help.org.

The Tottering See-Saw of “Empathy Exercises”

by D’Arcee Neal, UCP’s Manager of Institutional Giving

D'Arcee Neal

D’Arcee Neal

Being a person who is disabled and who works as a disability advocate is like being on a see-saw. I am tempted at times –influenced by society and my own experiences – to move into rage mode, because so much of what I see day in and day out doesn’t mesh with what I know is right. But then I tilt toward the other side which is a “woe is me” mode of pity, sympathy and understanding because I know that I can better get my point across by interacting with people in a gentle, respectful way. In reality, I think that effective advocates balance on the see-saw’s fulcrum, right in the middle. You can teach without being combative, but shoving the rage down inside of you and ignoring what’s wrong with a pair of rose-colored contacts in your eyes helps no one.

 So, when I saw a video this week of CNN’s Anderson Cooper as he tried an empathy exercise for people who have schizophrenia, I moved back and forth on the emotional see-saw as I tried to make sense of what I was seeing. I came across the clip after seeing comments on it from people in an online Cerebral Palsy group I belong to. They were posting angry comments about the purpose of empathy exercises and their effectiveness with the general public. I wondered for a moment: do empathy exercises really do ANYTHING?

Most of us (especially people with disabilities) already know that nothing accurately replicates another individual’s struggles. This is partially why struggles are so difficult, whether it be issues of race, disability, sexuality or any of the myriad possibilities in the human race. However, this isn’t to say that we should just shrug our shoulders. If the only people willing to learn about disabilities were doctors, then the world would be a much different place, and society might see medical professionals as little more than morbidly curious paparazzi with scalpels instead of cameras.

Thankfully, the world isn’t like that and we have people from all walks of life dedicated to learning about, dealing with, and understanding people with disabilities. But for those who haven’t crossed that threshold of understanding, then empathy exercises are one of the best ways to offer them the tiniest glimpse into another person’s world. 

In college, I had a friend who decided to live in a wheelchair for 48 hours as part of a sociology project. In my mind, I laughed because I knew there was a slim chance that he would actually do it, but I played along. Just rolling about 2 or 3 blocks to the cafeteria for dinner together, he was out of breath from the effort. He exclaimed that he needed to “pause” the experiment because he had to use the bathroom really badly. My facial expression said it all. And I think he began to understand what many see as the fundamental flaw of the empathy exercise: they end. My Cerebral Palsy is a constant, all-day, all-consuming affair, much like any permanent disability and I understand why some people are angry about the idea that it is possible to simulate it. The exercise cheapens and reduces the experience, in their opinion.

I think that if the experience is framed in the right way, it could be such that people would never forget it. Even if the experience isn’t particularly powerful, the understanding is there at least for the moment, so that people might think about it in the future, and that’s a good thing. Honestly, that’s what I think empathy exercises are about – not about changing someone’s perspective in a mind-blowing way, but introducing small changes which allows leads them to momentary understanding which might come back. 

Empathy exercises may not be the societal game changer many people want it to be, but you have to start somewhere.



CONTACT: Kaelan Richards: 202-973-7175, krichards@ucp.org


Washington, DC (September 19, 2013) – United Cerebral Palsy (UCP) released the following statement in response to the Commission on Long-Term Care’s Final Report to Congress. 

There are currently an estimated 12 million Americans in need of long-term services and supports, and that number is expected to grow dramatically in the coming years. To address this growing need, the Community Living Assistance Services and Supports (CLASS) program was created— but unfortunately, it was repealed as part of the American Taxpayer Relief Act of 2012.

In its stead, the Commission was established to address the issues surrounding long-term care, specifically service delivery, the workforce requirements and financing, and required to produce a report within six months. The Final Report detailing their suggestions was approved by a vote of 9 to 6 on September 12, 2013. However, five of the commissioners who voted “no” released alternate recommendations that suggest financing long-term care through a social insurance program.  

“While we commend the Commission for finishing its work, no easy feat given the short amount of time available and magnitude of the challenges surrounding long-term care, we are disappointed that the Final Report does not address the most critical issue: financing. Any realistic, comprehensive solution to our country’s long-term care issues must address how it will be paid for—and this report fails to do so,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “However, we must also recognize the recommendations made by the five commissioners who voted against the Final Report. Their proposal, to create a public insurance program that would supplement existing private insurance and family caregiver options, is a feasible starting point to addressing the long-term care crisis our country is facing and should be taken seriously. Overall, the actions of the Commission should serve as a stark reminder of how complex the challenges surrounding long-term are, and how urgent the need is to take action.”

# # #

About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.



CONTACT: Kaelan Richards: 202-973-7175, krichards@ucp.org


Connor and Cayden, who has CP, compete as a team in triathlons 

Washington, DC (August 30, 2013) – United Cerebral Palsy (UCP) is thrilled to announce that the Team Long Brothers, Connor and Cayden Long, will serve as the 2013 World Cerebral Palsy (CP) Challenge Ambassadors.

Connor, 10, and Cayden, 7, compete in triathlons and were named the 2012 Sports Illustrated SportsKids of the year— but they are more than just an active pair of brothers. Cayden has spastic cerebral palsy, and cannot walk or speak. Connor pushes Cayden in a stroller, pulls him in a raft and tows him behind his bicycle in each race. And along the way, this amazing duo has shown that anything is possible with the love and support of their friends and family. 14 triathlons later, Team Long Brothers has truly embodied their motto to “Keeping Rolling!”

Team Long Brothers’ next competition is the World CP Challenge, four-week event to raise awareness and support for people with cerebral palsy and other disabilities. Beginning on September 4, teams from around the world will challenge themselves to take 10,000 steps a day— and nearly any activity, including biking, physical therapy and yoga, can be converted into steps on the World CP Challenge website. Last year, nearly 7,000 people worldwide participated in the challenge and raised an incredible $774,399. Team Long Brothers is committed to helping make this year an even bigger success!

“Our family is so honored to see the boys as the ambassadors for the Challenge, we hope that other families will see the importance of being active and healthy as much as we do, and the great thing about this challenge is anyone can take part and it will help families and individuals living with the everyday challenges of Cerebral palsy,” said the Long family. “So always remember to Keep Rolling!!”

“We are thrilled to have Team Long Brothers as ambassadors for the World CP Challenge. Their story shows that, with the support they need, anything is possible for people with disabilities,” said Stephen Bennett, President and CEO of UCP. “Connor and Cayden are an inspiration, and we look forward to watching their progress throughout the month—and hope we can keep up!”

For more information about the Long Brothers and their story, please visit their website,www.teamlongbrothers.org.

# # # 

About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.



Kaelan Richards: 202-973-7175, krichards@ucp.org



Team designs solar-powered wheelchair, awarded 1st prize of $20,000

Donates chair to man who submitted idea, funds to help advance World CP Day

Washington, D.C. (May 10, 2013) – United Cerebral Palsy (UCP) and its international partners have announced the winner of the first annual World CP Day invention contest: a team from the University of Virginia, who created a solar-powered wheelchair.

World CP Day was established in 2012 as a way to raise awareness and support for people living with cerebral palsy around the world. Through the “Change My World In One Minute” contest, people can submit ideas for something that would make a real difference in the lives of people with cerebral palsy—and an incredible 473 ideas were submitted. From these, three final ideas were selected: a fold-up motorized wheelchair, a documentary on cerebral palsy in the 21st century and a solar-powered wheelchair. The public was then invited to submit proposals for a chance to win $25,000 and to bring their ideas to life.

The team from the University of Virginia, led by Dr. Mool Gupta, included six students: Dennis Waldron, Duncan McGillivray, Craig Ungaro, Ankit Shah, Maria Michael and Kyung Kim, and was primarily constructed at the National Institute of Aerospace’s Research and Innovation Laboratories Facility. The concept for the wheelchair was inspired by the design of retractable roofs on convertible cars and utilizes lightweight yet robust materials with high efficiency solar cells. This innovative combination enables the wheelchair to increase its range by more than 40 percent over battery usage, and to run a one mile per hour indefinitely without consuming any battery charge. Operated by a single switch, the wheelchair includes standard components as well as USB power outlets. 

Awarded $20,000 for their first prize invention, Dr. Gupta and his students decided to use the prize money to refine and ship the wheelchair to the man who posted the suggestion online, Alper Sirvan, who has cerebral palsy, and donate the remaining proceeds back to UCP to help advance World CP Day in the years to come. 

“UCP is thrilled to present this award to the University of Virginia for their creation of a solar powered wheelchair as part of the first World Cerebral Palsy Day’s Change My Life in One Minute invention contest, which focused on concrete, attainable ideas that could change people’s lives. We are very proud to say that, together with the incredible efforts of the University of Virginia, Dr. Gupta, and all of the students and partners involved, one of these ideas has been brought to life,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “And it is truly inspiring to hear of the University of Virginia’s decision to use the prize money to send the wheelchair to the man who inspired the idea and return the remaining funds. I applaud these extraordinary individuals for their work, and appreciate their efforts in helping to ensure that people living with cerebral palsy can live their lives to the fullest.”

“This team of graduate and undergraduate students have created a device that will truly benefit those with disabilities,” Engineering School Dean James H. Aylor said. “The students on the team are excellent examples of the type of engineer we strive to produce in the U.Va. Engineering School – innovative leaders who are agents of change in society. I am thankful for the World CP Day organization for giving them this opportunity and for the National Institute of Aerospace for providing laboratory space.”

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About United Cerebral Palsy
United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.

About the World CP Day Campaign:
World Cerebral Palsy Day is an innovative way for 17 million people with CP to tell the world what they need to make their lives better and it’s a way to turn some of those ideas into reality. World CP Day was piloted in 2012. From 1 August, people with cerebral palsy, their families and friends posted ideas online for something that could be created, developed or modified that would change the world for someone with cerebral palsy. Ideas were posted as text or video. Each idea needed to take only 1 minute to read or watch. From World CP Day, September 4, people were encouraged to go online, review the ideas and vote for the concepts that could have the greatest impact on people’s lives. At the end of September, the World Cerebral Palsy Day Panel reviewed the ideas and public votes. Three ideas were shortlisted for development. Social activists, researchers, inventors, and innovators were then invited to turn the shortlisted ideas into reality. They competed for a total prize pool of $25,000. The winner was announced on April 27, 013.

World CP Day partners include organizations from America, Australia, Austria, Azerbaijan, Bangladesh, Bulgaria, Canada, China, Croatia, Finland, Germany, India, Indonesia, Ireland, Netherlands, New Zealand, Niger, Panama, Poland, Portugal, Scotland, Singapore, Slovenia, Sri Lanka, South Africa, St Lucia, Sweden, Turkey and the UK.




Kaelan Richards: 202-973-7175, krichards@ucp.org



Awards recognize exceptional achievements, activities and dedication to UCP’s mission

Washington, DC (May 2, 2013) – United Cerebral Palsy (UCP) has announced the honorees for the 2013 Awards for Excellence, which recognize UCP affiliates, individuals and companies whose exceptional activities, achievements and dedication exemplify the UCP mission to educate, advocate and provides support services to ensure a life without limits for people with a spectrum of disabilities.

The 2013 Awards for Excellence were presented at UCP’s 2013 International Conference, “Redefining Family: Supporting the New Caregiver Community,” which explored how families have evolved and expanded above and beyond the traditional definition and the ways in which UCP and its affiliate network can best continue to provide and adapt to the needed supports and resources people with disabilities and their families need.

More than 150 affiliates, partners and allies participated in this year’s conference, which featured UCP’s Celebrity Ambassadors, Emmy-nominated actress Cheryl Hines and actor RJ Mitte, known for his role as Walter White Jr. in the Emmy-nominated AMC drama Breaking Bad. Actress Meredith Eaton, known for her breakout role in the ABC hit series Boston Legal, and granddaughter of one of UCP’s founders, Nina Eaton, also helped to present the awards.

“UCP is thrilled to recognize so many extraordinary leaders who are striving each and every day to make a difference in the lives of people with disabilities,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “The Awards for Excellence honor our affiliates and partners who are committed to advancing the independence, productivity and full citizenship of people with a spectrum of disabilities—and we are proud to stand with our honorees today.”

The eight 2013 UCP Awards for Excellence were presented to the following recipients at the Opening Reception and the Awards for Excellence dinner and presentation during UCP’s International Conference, held last week in San Diego, CA.

The Kathleen O. Maul Leadership Award is presented to an exceptional executive director in memory of Kathy Maul, a remarkable executive director at UCP of Suffolk who died young and left a legacy of leadership ability and strong commitment to UCP.

Edward R. Matthews, Chief Executive Officer of UCP of New York City, was recognized with the 2013 honor for his dedication and long history working to improve the services and supports provided to people with disabilities, including: part of the Medicaid Redesign Team, responsible for overhauling New York State’s massive Medicaid system; serving on the Steering Committee to implement the People First Waiver, a partnership between New York State and the federal government to reconstruct the Medicaid funding system for New York’s citizens with developmental disabilities, to provide them greater choice and access and reduce costs; leading the InterAgency Council (IAC) in New York City, a coordinating body and trade association consisting of over 150 agencies providing services for people with developmental disabilities; and serving as CEO of UCP of NYC since 1989, during which the affiliate has grown to a budget size of more than 107 million and provides services to more than 14,000 children, adults and their families throughout New York City.

The Employer of the Year Award recognizes a business or agency that has made an outstanding contribution to employing people with physical disabilities or has supported the training and hiring of people with disabilities, and created an improved work environment. Employees with disabilities must be fully integrated into all aspects of the workplace.

Nominated by UCP of Central Florida in recognition of their long relationship with the company, Publix Supermarkets in Lakeland, Florida has demonstrated a commitment to diversity and helping people reach their full potential through meaningful employment. Publix sets a precedent for all workers to respect diversity and to be mindful of disabilities, including requiring all managers to attend diversity workshops entitled “Developing Cultural Competence.” In addition, diversity training and disability awareness are incorporated into new associate trainings, creating an inclusive and understanding community where everyone is valued. Publix offers an inclusive work environment that only sees abilities, not differences.

The Ritter Legacy Award recognizes an affiliate that has produced exemplary communications through a variety of media that increases public awareness about people with disabilities, the programs of the affiliate and the national UCP brand. The award also recognizes the affiliate’s appropriate use of the official UCP logo, colors and messaging.  The 2013 Ritter Legacy awardee is UCP of the North Bay for its 2012 Annual Report, “Season of Gratitude Holiday” Ask Program, which reached out to donors in a way that emphasizes personal impacts that each individual can make in supporting UCP programs, and the Who We Are & Where We are Going PowerPoint Presentation, which is a quick and effective way to share information about all of the affiliate’s programs. UCP of the North Bay consistently develops communications that convey their mission, vision, and many facets of their services, and is honored for their innovative communications and powerful promotion of their programs. 

The Outstanding Youth Award is designed to honor a young person who has significantly enhanced the lives of people with disabilities through caregiving, volunteerism, advocacy, innovation or fundraising. This year’s awardee is Katy Fetters, nominated by UCP of Orange County. Fetters is an ambitious and motivated young woman. Her blog, Teen Cerebral Palsy, connects young people living with CP. She creates a safe space for people to share their experiences and get support from one another. Her honesty and positivity make her a wonderful role model for young people who are learning to be self-advocates. Fetters is also an active volunteer and ambassador for UCP of Orange County, and inspires teens to embrace their disabilities and challenge themselves to live a life without limits. 

The Nina Eaton Program of the Year award recognizes a program of a UCP affiliate that has made an extraordinary contribution to the quality of life of people with disabilities, enabling them to become more independent, productive, or integrated into the family or community through a particular program.  The 2013 award is presented to Ability Connection Oklahoma for their New Voices program. 

New Voices is an assistive technology program that pairs non-verbal children (and some adults) with an Apple iPad with comprehensive language software that fosters communication efforts. One of the unique aspects of the program is that the iPad is theirs to keep, which facilitates more growth and progress in their ability to communicate. 

New Voices is making it possible for children and adults to gain more independence and confidence. Some children are learning to speak for the first time or communicate with teachers, family and friends. Enabling communication through technology allows children to participate in school and other activities with greater ease, and promotes inclusion. Thanks to the digital technology, voices that were once silent are now heard, with one recipient of an iPad writing “you have made the possibilities limitless for me.”

The Ethel Hausman Volunteer of the Year award recognizes an exceptional individual who, through volunteering, has made an outstanding contribution to UCP. This year’s award is presented to Jay Kapp, nominated by UCP of Georgia. His dedication to advancing UCP’s mission extends the legacy of his father, the late Charles Kapp. Charlie was a senior sales executive with Miller Brewing Company, and his daughter Dana had cerebral palsy. Charlie was a long-time supporter of UCP and fostered Jay’s involvement with UCP. Jay wishes to instill these same values in his two children. Kapp is an exemplary leader that has proved an excellent ambassador for UCP of Georgia, and has served on the Board of Directors for his affiliate since 2001. As the owner of the company Kapp Koncepts, Kapp utilizes his marketing, design, and management expertise to increase the visibility of UCP of Georgia on the local and state levels. Additionally, he attends the Miller Coors-Charlie Kapp Golf Challenge held each year by UCP of Southeast Wisconsin; the event is now in its 17th year.

Kapp’s personal commitment to UCP is evident in the hundreds of hours he volunteers annually and his work to help UCP of Georgia expand its services, and he truly embodies UCP’s mission through his service. 

The Universal Accessibility Design Award recognizes an individual, business, government or governmental agency that has provided leadership developing a universally accessible environment by creating new tools modifying the environment, enhancing independent living or achieving a barrier-free environment.

Gina Hilberry, from Cohen Hilberry Architects in St. Louis, Missouri, represents UCP as its delegate to the ICC ANSI 117.1 Standards Development Committee and serves as Vice Chair of the Wheeled Mobility Task Force. The ICC, or International Code Council, was created in 1994 to develop a single set of comprehensive and coordinated national model construction codes and standards. Section 117.1 addresses access for people with disabilities. The specifications in this standard make sites, facilities, buildings and elements accessible to and usable by people with such physical disabilities as the inability to walk, blindness and visual impairment, deafness and hearing impairment, reaching and manipulation disabilities and reacting to sensory information. The intent of the 117.1 Standard is to allow a person with physical disability to independently get to, enter, and use a site, facility, building, or element. This section deals with the details of design and construction that can have a profound impact on the ability of people with disabilities to live and work in the community.

In 2012, the ICC began a multi-year process to update 117.1. Hilberry, as UCP’s delegate, has shepherded the Wheeled Mobility Task Group in the critical job of applying recent research on the expanding size and variety of wheelchairs and scooters to the basic building blocks of accessibility that have been the U.S. standards for over 30 years. Thousands of buildings across the country will not require individual advocacy because the state requirements for access will already be in place, thanks largely to Hilberry’s work. And, if history is any guide, the ADA’s federal accessibility standards will, over time, incorporate equivalent expanded requirements. Hilberry has spent her architectural career dedicated to improving the standards and policies that enable people with disabilities to move freely and independently in their homes and community. It is the job of architects to make the built environment work for all of us, and Hilberry has truly brought honor to her profession, using the tools of architecture to persuade the powers that be to do what is right.

The Life Without Limits Award honors an individual with disabilities who has demonstrated leadership and achievement of such caliber as to be a significant role model to people with and without disabilities. This year, UCP honors Geri Jewell, nominated by UCP of Tampa Bay.

Throughout her life, Jewell has consistently broken barriers for people with disabilities.  While best known as “Cousin Geri” on the NBC sitcom “The Facts of Life,” Jewell’s life is symbolic of breaking many barriers for people with disabilities. She was the first person with a disability to have a regular role on a prime time series, and her portrayal was not one to be pitied but one that placed people with disabilities on par with other “typical” characters.

She was among the first comics with a disability to have her own regular stand-up routine, paving the way for Josh Blue and the many others that have come after her. She went on to appear in Emmy Award-winning movies, on Sesame Street and most recently on the HBO hit series, “Deadwood.” In 2011, Jewell released her autobiography, I’m Walking As Straight As I Can: Transcending Disability in Hollywood and Beyond. This candid memoir details her experiences from her traumatic birth in Buffalo, New York, to her rise to stardom as a stand-up comic to becoming a television star and documents the harsh realities of show business by recounting the relentless discrimination and abuse she suffered at the hands of people she trusted, and how she rose above it all.  It has recently been recorded as an audio book, making her story even more accessible to others.

Beyond her roles on TV and screen, she is a tireless advocate for people with disabilities, speaking to corporations, government agencies and the media about the importance of treating people with disabilities the same way we all want to be treated. Jewell is famous for her uncanny ability to captivate the hearts of her audiences by using humor to facilitate attitudinal change. She brings to her presentations her personal experiences in life, which in turn allow people to gain insight into the prospect of seeing disability in a totally different light, creating hope where there is none, and joy where there is pain. We are honored to present Geri Jewell with the 2013 Life Without Limits Award for the many ways she has served as a pioneer for the civil rights movement for people with disabilities.

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 About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.