UCP RELEASES ANNUAL REPORT ON STATES SERVING AMERICANS WITH DISABILITIES

FOR IMMEDIATE RELEASE

CONTACT:

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

UCP RELEASES ANNUAL REPORT ON STATES SERVING AMERICANS WITH DISABILITIES 

8th annual Case for Inclusion report ranks, compares states on Medicaid outcomes

Washington, D.C. (April 17, 2014) – United Cerebral Palsy (UCP) released the 2014 Case for Inclusion today, an annual report that tracks the progress of community living standards for Americans living with intellectual and developmental disabilities (ID/DD).  

The Case for Inclusion is a valuable tool for understanding how Americans with intellectual and developmental disabilities (ID/DD) are faring across the country. The report examines data and outcomes for all 50 states and the District of Columbia (DC), ranking each on a set of key indicators, including how people with disabilities live and participate in their communities, if they are satisfied with their lives, and how easily the services and supports they need are accessed. By taking these factors into account, UCP is able to develop a comprehensive analysis of each state’s progress or failures in providing critical services to individuals living with disabilities.

Since 2006, these rankings have helped enable families, advocates, the media and policymakers to fully understand each state’s progress or lack of improvement, learn about how the highest-ranking states are achieving their success, and ultimately, to promote inclusion and enhance the quality of life for all Americans. This year’s Case for Inclusion report includes several major enhancements to the rankings system, made as a direct result of the feedback received from policymakers and advocates, including more person-centered metrics. These changes will help to better understand and highlight how individuals and their families are faring as active parts of their communities. These changes lets us look at not just which states have closed institutions and are enabling people to live independently in their own home or apartment, but gets at what full opportunity and inclusion really mean.

“The Case for Inclusion report examines the supports and services that enable people with disabilities to lead a fulfilling, productive life—and make up the backbone of United Cerebral Palsy’s work. By providing insight into state’s progress in serving individuals with intellectual and developmental disabilities as well as a national context, this report is a valuable tool for comparison and improvement,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “We are proud to provide this resource to states, advocates and policymakers and hope that it will continue to be utilized to help advance the independence, productivity and full citizenship of people with disabilities.”

Significant Takeaways from the 2014 Ranking

Promoting Independence

All states still have room for improvement, but some states have consistently remained at the bottom since 2007, including Arkansas (#47), Illinois (#46), Mississippi (#51) and Texas (#50).

38 states now meet the 80/80 Community standard, which means that at least 80 percent of all individuals with ID/DD are served in the community and 80 percent of all resources spent on those with ID/DD are for community support. Those that do NOT meet the 80/80 standard are Arkansas, Illinois, Iowa, Kentucky, Louisiana, Mississippi, Nebraska, New Jersey, North Carolina, Oklahoma, Texas, Utah and Virginia, although Nebraska, North Carolina, Oklahoma, Utah and Virginia are very close.

As of 2011, 14 states have no state institutions to seclude those with ID/DD, including Alabama, Alaska, Hawaii, Indiana (new this year), Maine, Michigan, Minnesota, New Hampshire, New Mexico, Oregon, Rhode Island, Vermont, West Virginia and Washington, D.C.  Another 11 states have only one institution each. Since 1960, 219 (10 more in the past year alone) of 354 state institutions have been closed, according to the University of Minnesota’s Research and Training Center on Community Living. Another 16 more are projected to close through 2015.

18 states now meet the 80 percent Home-like Setting standard, which means that at least 80 percent of all individuals with ID/DD are served in settings such as their own home, a family home, family foster care or small group settings like shared apartments with fewer than three residents. The U.S. average for this standard is 77 percent. Just eight states meet a top-performing 90 percent Home-like Setting Standard: Alaska, Arizona, California, Kentucky, Nevada, New Hampshire, New Mexico and Vermont.

Six states report at least 10 percent of individuals using self-directed services, according to the National Core Indicators survey in 19 states.  These states include Connecticut, Georgia, Hawaii, Illinois, Kentucky, Michigan and Ohio. 

Tracking Health, Safety and Quality of Life

39 states participate in the National Core Indicators (NCI) model, a comprehensive quality-assurance program that includes standard measures to assess outcomes of services but only 19 states reported data outcomes in 2012. In January 2012, the Obama Administration made available grant funding so that even more states could participate and ensure their quality assurance efforts were benchmarked and comprehensive.  

Keeping Families Together

Only 15 states were supporting a large share of families through family support (at least 200 families per 100,000 of population). This is important, because those support services provide assistance to families that are caring for children with disabilities at home, which helps keep families together and people with disabilities living in a community setting. These family-focused state programs were in Alabama, Arizona, California, Delaware, Louisiana, Minnesota, Montana, New Hampshire, New Mexico, New York, Pennsylvania, South Carolina, South Dakota, Vermont and Wisconsin.

Promoting Productivity

Just 10 states have at least one-third (33 percent) of individuals with ID/DD working in competitive employment. These states include Connecticut, Louisiana, Maryland, Nebraska, New Mexico, Oklahoma, Oregon, Vermont, Virginia and Washington State.  Washington, D.C. and Pennsylvania were very close.

13 states report successfully placing at least 60 percent of individuals in vocational rehabilitation in jobs. With six states reporting the average number of hours worked for those individuals placed being at least 25 hours and five states reporting at least half of those placed remaining in their job for at least one year.  Only Nebraska and South Dakota meet the standard on all three success measures.

Serving Those in Need

Waiting lists for residential and community services are high and show the unmet need. Almost 317,000 people are on a waiting list for Home and Community Based Services. This would require a daunting 46 percent increase in states’ HCBS programs! However, 22 states report no waiting list or a small waiting list (requiring less than 10 percent program growth). 

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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.

 

UCP ANNOUNCES 2014 AWARDS FOR EXCELLENCE

FOR IMMEDIATE RELEASE

CONTACT:

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

UCP ANNOUNCES 2014 AWARDS FOR EXCELLENCE

Annual awards honor exceptional people, programs and partnerships across the UCP affiliate network

Washington, D.C. (April 14, 2014) – United Cerebral Palsy (UCP) is honored to announce the awardees for the 2014 Awards for Excellence, which recognize UCP affiliates, individuals and companies whose exceptional service, achievements and dedication succeed in enabling a life without limits for people with a range of disabilities and their families.

This year’s Awards for Excellence were presented at UCP’s 2014 Annual Conference, “Hitting the Right Note: Mission, Movement, and Music,” which took place in Nashville, Tennessee, and brought the UCP affiliate family together to discuss how to adapt to an ever-changing policy environment, identify new ways to talk about disability in a way that resonates with a variety of key audiences, and develop a roadmap for the organization’s future. Attendees participated in conversations about how the UCP network can explore new opportunities and strategies to continue and enhance our mission to ensure a life without limits for people with disabilities, and helped to develop a specific, strategic plan to grow and enhance the UCP network for the next generation and beyond.

More than 150 affiliates staff, volunteers, partners and allies participated in this year’s conference, including Board of Trustees member and UCP Celebrity Ambassador, actress Cheryl Hines. Known for her Emmy-nominated role on the HBO series Curb Your Enthusiasm, Hines has a long history of supporting UCP, and hosted this year’s Awards for Excellence presentation.

“The Awards for Excellence are a way for UCP to recognize the incredible work that our affiliates, friends and partners do to support our mission, and we are thrilled to honor such an extraordinary group this year,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “Their dedication and efforts to make a difference every day in the lives of people with disabilities across the country are incredible and we are proud of each one of our awardees. Their work is so inspiring, and a great example of our mission in action. Congratulations to them all!”

UCP recognized the following awards recipients at the Opening Reception and the Awards for Excellence dinner and presentation at the 2014 Annual Conference.

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. For his work over the past thirty years to ‘help families dream new dreams,’ it is with great pleasure that UCP presented this leadership award to Dr. Gary Edwards, CEO of UCP of Greater Birmingham.

When Dr. Edwards was named Executive Director of UCP of Greater Birmingham (UCPGB) in 1982, the staff totaled 25. Thanks to his dedication, UCPGB currently employs 160 people who serve several hundred children and adults – and their families – every day. During his tenure, Dr. Edwards expanded early intervention programming to make UCPGB Alabama’s largest service provider, launched a physical medicine and rehabilitation facility that serves eleven counties throughout the state, and developed UCP Enterprises to employ over 100 adults living with disabilities. For these, and countless other accomplishments, Dr. Edwards is highly deserving of this accolade.

The Chair Award is presented to a corporation deemed exemplary by the Chair of the UCP Board of Trustees that, through its support of UCP, has made a direct impact on the lives of the people the organization serves.

UCP presented this award to The Hershey Company, a valued champion of the organization’s mission since 2010. As a sponsor for UCP’s My Child Without Limits (MCWL) program, The Hershey Company supports health professionals and families and caregivers of young children, ages zero to five, with developmental delays or disabilities. With Hershey’s generosity, UCP provides medically reviewed information and resources, as well as an online support community, to people throughout the country and around the world. In 2012, The Hershey Company announced a new initiative to expand its hiring of individuals with intellectual and physical disabilities in its manufacturing facilities. The Manufacturing Apprenticeship Program embodies Hershey’s Corporate Social Responsibility philosophies and the company’s commitment to attract, engage and retain a more diverse and inclusive workforce. The Chair Award was presented to The Hershey Company in recognition of the corporation’s continued investment in the lives of people with disabilities.

The Employer of the Year Award recognizes a business or agency that has made an outstanding contribution to employing people with physical disabilities, or that has provided training programs leading to employment and creating a better working environment for people with disabilities. It is with great admiration that UCP recognized Meijer, Inc. of Grand Rapids, Michigan for doing just that.

UCP of Metro Detroit nominated this leading Supercenter because of the company’s steadfast commitment to diversity and dedication in helping people with disabilities reach their full potential through meaningful employment. In 2009, the organization made a commitment to recruit qualified individuals with disabilities into its manufacturing and distribution network, and partnered with local and state vocational rehabilitation organizations in Michigan, Indiana, Ohio, and Wisconsin to effectively source candidates with disabilities. Meijer sets a precedent for all workers to respect diversity and to be mindful of disabilities. The organization provides training to leadership members on diversity and inclusion. Further, they have a full-time employee dedicated to driving the disability employment initiative and coordinating vocational rehabilitation efforts. Meijer stands as an active voice in discussions around Disability Policy Reform for the State of Michigan in an effort to create more opportunities for persons with disabilities. For fostering an environment where all employees are treated equally and given the tools they need to succeed, UCP honored Meijer, Inc. as the 2014 Employer of the Year.

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. This year’s award goes to UCP of San Luis Obispo for its Life Without Limits Individual Campaign. This campaign depicts real people with disabilities as individuals with interests similar to all people within the community. This marketing tactic is strong, powerful, resonates with the general public, and promotes UCP’s mission of a life without limits.

The campaign has succeeded in raising awareness within the affiliate’s service area – building the mindset that people with disabilities are active within the community and have individual interests. The campaign presented a dynamic representation of individuals with disabilities across a number of channels, including print, social media, and video. We applaud UCP of San Luis Obispo for its innovative communications, powerful promotions, and targeted marketing outreach.

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 Marie Blanchard, nominated by UCP of Oregon and Southwest Washington. Her teachers have called her powerfully determined, impressive, and inspiring.  A volunteer coordinator called her responsible, dedicated, and enthusiastic. Friends consider her “a walking infomercial on the joy and potential of being a person with a disability.” Born with cerebral palsy, Blanchard’s physical limitations have not stopped her from becoming an artist, activist, fundraiser, and supporter of UCP – all before the age of ten! She has also raised over $20,000 in support of UCP of Oregon and Southwest Washington’s “Walk, Run, n’ Roll” event, gave a keynote speech at a statewide disability conference with an audience of several hundred, created a disability awareness program that has impacted over 150 local elementary school children, written her own original cookbooks, and started a highly successful Etsy store featuring her original art pieces.

Blanchard inspires teens to embrace their disabilities and challenge themselves to live a life without limits, and we are humbled and inspired by her efforts. 

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 2014 award is presented to UCP of Huntsville and Tennessee Valley, Inc. for its Childcare Enhancement with a Purpose (CCEP) program. The CCEP program is an innovative inclusion training and technical assistance initiative that uses a multidisciplinary team approach to address issues related to childcare providers and community settings. The program offers a proven approach to training individual childcare providers and parents through on-site trainings, consultations, and technical assistance supporting best practices for inclusive environments for children with special needs. Further, the training provides the knowledge base and tools necessary to identify and assist children at risk of possible developmental delays. UCP affiliates throughout Alabama are proud of the CCEP program and of the program’s insight and innovation to address a crucial need of families throughout the state who have children with disabilities.

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.

UCP of Sacramento and Northern California nominated Wijit, Inc., a component of Innovations Health Devices, for its technological creation that has revolutionized the manual wheelchair. The Wijit is a unique, level-activated propulsion system that ends reliance on the manual push rim and allows wheelchair users to work with their larger muscle groups, greatly reducing upper extremity stress injuries. The Wijit alleviates the need for expensive motorized chairs by replacing the existing wheel of the wheelchair from the axle out. This innovative technology allows manual wheelchair users to travel twice as far while expending half the energy – benefiting mobility, reducing repetitive stress injuries and saving money. The invention of the Wijit is worthy of the Universal Accessibility Design Award due to the impact it has made on the communities that UCP serves.

The Ethel Hausman Volunteer of the Year Award recognizes an exceptional individual who, through volunteering, has made an outstanding contribution to UCP.

Every Monday through Friday for the past eight years with very few exceptions, Althea Lewis has volunteered at the UCP of Tallahassee’s LifeLinks Day Program. While she does not drive, Lewis rides the bus or catches a cab every day to and from the facility – demonstrating her strong volunteer ethic. In this capacity, she does what she does best: share her kind and uplifting self with profoundly disabled individuals. And it shows!

Individuals within this program that do not verbally communicate or readily respond to stimulation know Lewis and respond her gentle approach. Her presence causes them to smile, move more, make sounds and engage in direct eye contact. Her care and compassion for the individuals she serves is genuine and causes a true difference in her community. For the impact she has made on the LifeLinks program and for her unfaltering dedication to the organization’s mission, UCP proudly presented the 2014 Volunteer of the Year Award to Althea Lewis.

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.

Danielle Liebl of UCP of Central Minnesota received the 2014 Life Without Limits Award in recognition of her work to successfully challenge stereotypes, her status as an outstanding leader within her community and her active participation in activities to enhance the quality of life for others with disabilities. Described as the ‘poster child’ of Special Olympics Minnesota, Liebl’s participation and leadership in this organization began at the age of eleven. She was an athlete for six years competing in swimming and golf, and continued her involvement as an advocate promoting inclusion and participation in her local community of Richmond and Cold Spring, Minnesota. During her time on the Special Olympics National Youth Activation Committee, Liebl co-founded a campaign called “Spread the Word to End the World.” This campaign has gained impressive momentum and become an international movement.

While a student, Liebl served two years on the board of directors for UCP of Central Minnesota and participated in events and committees to improve programming and services to individuals with disabilities across the state. A 2013 graduate of the College of St. Benedict, Liebl was most recently selected as one of only ten youth (out of 700 nominees nationwide) to be awarded a 2013 Peace First Fellowship. This award includes a $50,000 grant over two years to establish her nonprofit organization, DIFFERbilities Experience, for the purpose of providing opportunities in arts, education and sports to persons with and without disabilities to promote inclusion and acceptance.

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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.

People With Disabilities Are No Strangers to DIY

By Josef Scarantino, UCP’s Manager of Strategic Partnerships, Life Labs. Article originally ran on doityourself.com

Though it may not be apparent, people with disabilities were some of the earliest pioneers of the DIY ethos. Driven by home environments that required hacks to make them more accessible and livable, and using their own ingenuity, people with disabilities have played a large role in propelling the DIY movement forward. In fact, some of the best innovations have come from within the disability community, who know and understand their own challenges better than anyone else.

Homemade Innovation

One of the most well-known DIY projects involving people with disabilities was the 3D-printed prosthetic hand made by a father for his son, who was born without fingers on his left hand. The story caught the attention of media outlets around the world and showcased the power of ingenuity and determination.

People are now producing their own intricate 3D-printed prosthetic hands and posting the instructions online free for anyone interested in making or improving the designs. A California-based nonprofit organization called Not Impossible has even taken the concept to the war-torn country of South Sudan where they started a lab and training facility to create prosthetics for children affected by the civil war.

Even five years ago, some of these concepts might have been considered impossible by people outside of the engineering and design space. But the barriers of entry for anyone, regardless of ability, are quickly disappearing with the availability of neighborhood makerspaces, more affordable tools such as 3D printing machines, and the increasingly collaborative sharing of universal design principles. Most importantly, all of these advances are being made accessible to everyday people without scientific or creative backgrounds who simply have the determination to improve on an existing product or even create a new invention.

DIY and the Design-athon

While the DIY and maker movement has grown from tinkerers working alone in their garages to a major cable networks and websites, we are at a turning point in the disability community. Organizations such as United Cerebral Palsy (UCP) are leading the charge in leveraging the DIY movement for the benefit of the people we serve — our Life Labs initiative is at the forefront of this effort. Based on the central tenant that innovation is a primary catalyst for the inclusion and progress of people with disabilities in society, Life Labs firmly believes that empowering people with disabilities to participate in the DIY movement is just as much about human rights as it is about the creation of more universal innovations. 

In November 2013, UCP’s Life Labs partnered with Google and UK-based organizations Enabled by Design and FutureGov to hold their first annual Washington, D.C.-based Design-athon, an international innovation event with a focus on disabilities. Hackers, designers, DIYers, and inventors of all kinds and from a variety of fields participated, including teams from NASA, the U.S. Department of Health & Human Services, the World Bank, the Corcoran College of Art + Design, the Cerebral Palsy Alliance, and eight universities. Reddit co-founder Alexis Ohanian even made a surprise appearance via Google Hangout to greet attendees and voice his support for the event. Over two exciting days, the participants heard from seasoned innovators and entrepreneurs, discussed the issues surrounding the need for more accessible, attractive and easier to use products for people with disabilities, and to worked to build functional, scalable prototypes. One of the highlights of the Design-athon was an immersive usability workshop where participants completed a range of empathy activities involving the use of crutches, visual impairment simulation glasses and gloves of varying thicknesses to simulate altered dexterity, all to help gain a better understanding of what kinds of products would make a difference for people with disabilities.  

The amazing results included prototypes that addressed mobility, dexterity and communications issues and demonstrated just how quickly products can be designed, personalized and built to better fit with people’s lives and their needs. Teams were eager to make use of the 3D printing machines, provided by PCS Engineering, within the first couple of hours of the event.

A panel of judges, including representatives from Google, Enabled by Design, FutureGov and Adobe, awarded the top prize to “Sous Chef,” a mobile kitchen island with variable height.

The event attendees awarded the people’s choice award to “Springboard,” a device that combines a cutting board with any knife to help stabilize the food preparation process.

The D.C. Design-athon was an amazing, inspiring event that brought together a diverse group, from people with disabilities to entrepreneurs to designers and healthcare providers, all with the same goal: find innovative solutions to the challenges that people with disabilities face. But as the winning designs demonstrate, the group’s inventions could appeal to a much broader audience. Both prototypes addressed the mobility and dexterity issues they were designed for– and surpassed them, functioning as tools that anyone could use and benefit from. It is this intersection of creativity and usability that makes the DIY movement so exciting – not just for UCP and the people we serve, but for anyone who sees a challenge as an opportunity to design, innovate and create.

UCP’s Life Labs team is constantly working to find ways to bring the Design-athon experience to more people, both within and outside of the disability community. Already, UCP affiliate the Cerebral Palsy Alliance, based in Sydney, Australia, has made plans to hold their own Design-athon in July 2014, spreading the message of inclusion to students, designers, and makers around the world. We see these events not just as the start of something great, but truly embodying the heart of the DIY ethos: meaningful social progress through innovation comes when people of any background and ability can participate in bringing their ideas to life.

A New Direction: Discovering My Cerebral Palsy

Guest blog post by Dalila Castillo. Originally appeared as a featured story on the Cerebral Palsy International Research Foundation’s website on July 23, 2013. 

Have you ever felt different? If you’ve lived at least one day as an adolescent, chances are, the answer is yes. I am no exception, as my physical weakness provides a constant reminder of what makes me different. I’ve been asked, “why do you walk like that?” countless times and I didn’t have a solid answer up until recently. I never fully understood why, and was ashamed of the fact that, I couldn’t complete certain tasks like everyone else could. I’ve always known that I have a condition that creates challenges for me. I’m accustomed to the discomfort — the aches, pains and muscle stiffness that came along with the condition and I constantly tried to overcompensate for my shortcomings. What makes all of this especially unique is that I grew up not knowing exactly what caused me to walk “like that.”

I was born three and a half months early due to a premature membrane rupture and until a couple of months ago, all I knew was there were complications during my birth that caused my condition. Last October, after graduating from law school and sitting for the bar exam, I finally mustered up the courage to search for the details. To start, I requested my medical records from the Hospital of Special Surgery, where I had surgery and went to physical therapy as a child. I will never forget the feeling of anticipation and anxiety I had when the thick manila envelope finally arrived and was in my hands. Opening the envelope evoked feelings not unlike those I had when I opened my college and law school admission envelopes, only this time, instead of telling me where I was going, somewhere in these 150 pages of medical history, I would learn where I had been.

There it was. In the center of the first page in black and white, Diagnosis: Cerebral Palsy (CP). I have CP. My first reaction was bittersweet; a medley of excitement and relief. I was excited to be closer to understanding this part of who I am. I am ashamed to admit that I was also taken aback because I had fallen victim to the common misconception that people with CP were low functioning and constrained to wheelchairs. Recognizing my ignorance, I grabbed a pen and legal pad and began reading the file, taking notes and “googling” medical terms like my life depended on it. I now know that CP affects people on a wide spectrum, just like autism and any other brain disorder. I myself have mild spastic diplegia, which means that I am affected in my lower extremities and endure muscle stiffness and involuntary leg spasms. I also know that CP results from a brain injury during either a baby’s development in the womb, during the birthing process or during infancy and it may not be perceptible until months after birth. An undetected infection during the mother’s pregnancy, severe oxygen deprivation during the baby’s delivery, low birth weight or any brain damage occurring after the baby’s birth are some causes of brain injuries that can lead to CP.

You might be wondering how is it that I didn’t know of my diagnosis until age twenty-five. My parents were both aware that I was born with CP, but they chose not to share that specific information with me. Since I have a minor case, they felt that I did not need to know. So instead, whenever I would fall down or otherwise feel like an outlier, my mother would remind me that every person has a struggle, an invisible scar, and this was mine. She would tell me that my condition actually made me just like everyone else.

Flipping through the pages of my medical record, I learned more about my past: things like, I weighed approximately 1 pound 15 ounces at birth and remained in neonatal intensive care for three months where I was supported with oxygen through a nasal tube. As well as other information such as, my mother first noticed my disability when I was about ten months old. I was unable to crawl on my hands and knees and could only crawl commando style (using my forearms to drag my body across the floor). She also saw minor delays in my motor and cognitive skills; for example, I didn’t say my first word until around two years old and when I sat in a chair, I tended to tilt to one side and could not feed or dress myself properly.

But, I of course have little recollection of any of those early developmental struggles.  I do, however, remember having to go to the doctor frequently and having surgery on both of my Achilles Tendons when I was five years old to loosen the muscles and allow me to walk with a flatter foot. After surgery, I had to face the difficult task of building up enough strength to use my legs and then, once I did, having to walk with a walker. I also remember feeling confused that I had to go through so much just to be able to move one foot in front of the other.

As a child, I constantly fell down and scraped my knees. After having surgery to lengthen my muscles, I attended weekly physical therapy sessions, had to wear orthotics in my shoes, leg braces at night and had to do heel cords stretches every day. My mobility increased tremendously thanks to all of these efforts, but, despite my progress, there is no cure for CP so I was still weaker than my classmates. I was teased and constantly felt left out and out of place, because I couldn’t participate in “normal” kid activities from skipping around in gym class to roller-blading with all of my cousins on a Sunday afternoon. The only way I can think to explain is I felt as if I did not control my legs, but instead that they controlled me. I was constantly self-conscious about what I couldn’t do gracefully or at all because of my condition.

When I was a teenager, I realized that I wasn’t gaining anything by using the weakness in my legs as an excuse, and it was then that I decided to try to run track and cross country my freshman year of high school. I pushed myself and my body to the absolute limit and in doing so, I learned that even if I can’t complete some tasks like most people, doing them in my modified form is so much better than not doing them at all, as long as I know I can do them without getting hurt.

Now as a young adult, I know how important it is to listen to my body. So to make things a bit easier on myself, I make it a priority to stretch and exercise, especially my leg muscles. But like anyone else, I have good days and bad days. I can get to point A to point B on my own, and I know that I am extremely lucky for that, but I still have to plan how I will get from one place to another with the least amount of discomfort. In other words, I have to choose my shoes carefully, as well as consider how much I will carry with me and how far I have to go before I can leave (whether it be by foot, car or public transportation). I’m not exactly sure how CP will affect me as my bones and muscles age, but I am confident that I will be able to handle it and adjust, just as I have in the past.

I’ve always perceived my condition as both a blessing and a burden. A burden because there are times when I imagine certain tasks and social situations would be much easier if I could just be “normal.” But when I really reflect on it all, I see that it is also a blessing because if I didn’t have CP and didn’t have to overcome constant tests of my physical and emotional strength, I wouldn’t be the ambitious, empathetic person who is writing this article today.

I say all of this to say: we are all different. We all have our struggles and can choose how to perceive them. As I mentioned earlier, learning that I had CP provided a sense of relief because I no longer feel in isolation, alone, or like I have a secret to hide; now, I am a part of the CP community. Thanks to the immense amount of love and support I’ve received from my family and friends after sharing my story with them, I’ve learned that my CP can be a positive impetus. I have chosen to view my recent discovery of the diagnosis as an opportunity –- an opportunity to share my story, to let people know what it means to have CP, and ultimately, to make an impact and empower others. In an effort to seize this opportunity, I connected with the Cerebral Palsy International Research Foundation (CPIRF) via my Facebook and LinkedIn page and I am pleased and excited to help educate and inform younger generations about CP and CPIRF as the founding Chairperson of the Young Professional Committee (YPC). The YPC will be raising awareness and funds for CPIRF’s research programs through fun social events. I have begun recruiting friends and volunteers for an inaugural event in New York City. If you are interested in learning more about getting involved with the YPC, contact me directly at dalilacastillo103@gmail.com or through the CPIRF office by calling (609)452-1200. Also, please visit www.cpirf.org for the latest information regarding CPIRF’s research investments and progress.

Dalila is a corporate attorney at Burgher Gray Haile & Jaffe LLP. She’s from Ridgefield, NJ and currently lives on the Upper East Side of Manhattan.

WORLD CP DAY 2014 IDEAS ANNOUNCED

FOR IMMEDIATE RELEASE                                                                      CONTACT:  

January 20, 2014                                                                Kaelan Richards: 202-973-7175

                                                                                                                 krichards@ucp.org

$50,000 prize pool for anyone who can bring the ideas to life!

More than 400 ideas submitted through “Change My World in 1 Minute” contest to help people with disabilities around the world

Washington, DC (January 20, 2014) – United Cerebral Palsy (UCP) and global partners have announced the three shortlisted ideas for the “Change My World in 1 Minute” contest for World Cerebral Palsy Day.

Established in 2012, World Cerebral Palsy Day is an international day of awareness about cerebral palsy through change and innovation that can make a difference for people living with disabilities. The “Change My World in 1 Minute” contest asks people from around the world to submit ideas that they think could change the world for someone with a disability. The ideas, which must address issues of mobility, independence, accessibility, communication or social connections, are then reviewed by two international panels of individuals with disabilities, parents of children with disabilities and experts in a variety of medical and engineering fields.

Inventors, designers and makers are now invited to bring these three ideas to life, and to compete for a $50,000 prize pool. The ideas are:

Don’t Spill a Drop

A completely spill-proof cup for teens and adults who have limited hand dexterity and strength. Must be component-based, customizable, low cost and look super-cool!

Designer Walker

A high-tech mobility walker for teens and adults with disabilities. Innovative design and fashion-forward style are key. It also must have all the strength and functionality of a regular walker, while being light weight and affordable. Extra points if it’s customizable!

Design4CP

A global collaborative enterprise to design and create products, services and technologies for people with cerebral palsy, plus an innovation plan to bring them to market.  

Of the more than 400 ideas submitted to the “Change My World in 1 Minute” contest, these three were judged to be the most innovative, helpful and feasible. Anyone can compete to bring these ideas to life, but entries MUST be submitted by June 20, 2014. The winners will be announced on July 21, 2014.

Last year’s winners, a team from the University of Virginia, created a solar-powered wheelchair, which they shipped directly to the man who submitted the original idea—in Istanbul, Turkey!

“Attention hackers, makers, designers, inventors—anyone with a passion for innovation and helping people! This year’s World Cerebral Palsy Day ideas have been finalized, and they represent a wide variety of innovative and aesthetic concepts that will truly help to change the world for someone with a disability. We challenge the world to bring these ideas to life,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “This is an extraordinary opportunity to combine creativity, design and technology for a great cause, and we can’t wait to see the results.” 

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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.

 

The Arc and UCP React to Offensive Language to People with Disabilities in The Wolf of Wall Street

For Immediate Release                                                  Contact (The Arc): Kristen McKiernan

January 13, 2014                                                                                                      202-534-3712

Contact (UCP): Kaelan Richards

                                      (202) 973-7175

The Arc and UCP React to Offensive Language to People with Disabilities in The Wolf of Wall Street

Washington, DC – The Arc and United Cerebral Palsy released the following statement in response to the use of the r-word and the offensive depiction of cerebral palsy in the new film The Wolf of Wall Street. 

“The Wolf of Wall Street is getting a lot of attention for how it offends audiences on many levels, but one aspect that hasn’t been discussed is its use of the r-word and its unacceptable mockery of people with cerebral palsy.  Hollywood just doesn’t seem to get it.  More than five years after people with disabilities protested at theaters across the country against Tropic Thunder, a film which included a highly offensive portrayal of people with intellectual disabilities, the industry is still using language and jokes that hurt audience members and don’t add any value to the artistic intent or point the film is trying to make,” said Peter Berns, CEO of The Arc. “Among moviegoers who have paid to see The Wolf of Wall Street in recent weeks are people with disabilities, their parents, siblings, and friends.  It’s time for Hollywood to wake up and see that their customers deserve better.”

“The Wolf of Wall Street’s gratuitous use of an offensive term for people with disabilities, as well as its depiction of cerebral palsy, is outrageous. For more than 60 years, UCP has been working to ensure that people with cerebral palsy and other disabilities can live their lives without limits—including equality, inclusion and respect in our society—but it is very clear that our fight is far from over,” said Stephen Bennett, President and CEO of UCP. “While we understand that the film’s content is deliberately distasteful and excessive, it does not excuse it. It is astonishing that the film’s producers, director and actors deemed this kind of language and portrayal to be acceptable—they can do better, and we urge them to.”

The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of 700 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

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 works 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.

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Giving the Gift of Inclusion

By Stephen Bennett, President and CEO of United Cerebral Palsy

Each year around the holidays, there seems to be a new ‘it’ toy or videogame that everyone is clambering for—and this year is no different, with Sony selling one million new PlayStation 4 consoles in the first 24 hours they were available. For the many Americans who identify themselves as gamers, or video game enthusiasts, this isn’t a surprise. But for many, the following statistic will be: of an estimated 200 million American gamers, approximately 40 million are gamers with disabilities.

For these gamers, and especially those confined to a hospital or rehabilitation setting, video games offer a unique opportunity to interact across physical locations and limitations. Given the right equipment, gamers of any ability can play nearly any game, compete against other gamers and become a part of the many thriving online communities. This leveling of the playing field can be very appealing, and is the motivation behind one of UCP’s new initiatives: making accessible video gaming available to people with disabilities through mobile, accessible video game stations. Spearheaded by our Life Labs team, a technology and grassroots-focused initiative, these Accessible Gaming Stations can be placed in hospitals or other settings, enabling anyone to play the latest games and interact with other gamers online— giving the gift of inclusion to many who thought they would never be able to play and interact with such a vibrant community. This kind of innovation shows how something as simple and as commercialized as a video game can open up a whole new world to someone.

These gaming systems will also offer an additional benefit to gamers with disabilities: they can be used for rehabilitative purposes, provide important social interactions and help to build self-confidence. Video games can also help improve memory, focus, spatial reasoning, critical thinking and reaction time, all important areas of development and especially critical for children and young adults. Beyond all of these immediate benefits, video games’ place in normal American life makes their accessibility an important matter of inclusion for all.

People with disabilities can spend a considerable amount of time in hospital or rehabilitation settings and, during these times, encounter difficulties playing video games stemming from caregiver or facility-related limitations. “Video games offer a way for these individuals to be engaged, learn and interact with others while having fun,” says Marc Irlandez, Director of UCP’s Life Labs. The Life Labs team is proposing to build an Accessible Gaming Station (AGS) prototype, a self-contained compilation of gaming equipment designed to address the physical, knowledge and time constraints that often prevent patients from playing video games. It is aimed at maximum accessibility, portability, safety and durability, and could be easily replicated. “This is the kind of project that Life Labs loves to work on— the AGS is a unique blend of technology and accessibility that could make a real difference in the life of someone with a disability,” says Irlandez. 

So this holiday season, let’s rethink consider the commercialization of video games and systems in a more positive light, and recognize their potential for creating a broader and more inclusive society. These gaming stations would provide not only a variety of rehabilitative benefits, but also the opportunity to be part of a diverse and thriving online community—making them truly a gift of inclusion. This is an extraordinary opportunity make our mission of a life without limits for everyone a reality, and we are so excited about its potential.

The Accessible Gaming Station is just one of the many exciting projects we’re working on at UCP. Be sure to check out what else our Life Labs team is up to, and stay tuned to UCP for more exciting updates!

 

UCP HOLDS FIRST INTERNATIONAL DESIGN-ATHON

FOR IMMEDIATE RELEASE

CONTACT:

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

UCP HOLDS FIRST INTERNATIONAL DESIGN-ATHON

More than 100 hackers, makers and inventors gather to design and create accessible design prototypes

Washington, D.C. (November 9, 2013) – United Cerebral Palsy (UCP)’s Life Labs, a technology and grassroots-focused initiative dedicated to identifying, developing, and supporting ideas that will make a difference in the lives of people with disabilities, hosted the two-day 2013 Enabled by Design-athon event.

Held in partnership with UK-based Enabled by Design and Futuregov, the Design-athon is an international innovation event with a focus on disabilities. Hackers, designers and inventors from around the country came together at theDesign-athon to hear from experts, discuss the issues surrounding the need for more accessible, attractive and easier to use products for people with disabilities, and to build functional, scalable prototypes. The incredible prototypes built over the two days demonstrate just how quickly products can be designed, personalized and built to better fit with people’s lives and their needs.

More than 100 individuals from a variety of fields participated, including: NASA, the U.S. Department of Health & Human Services, the World Bank, Google, the George Washington University, the University of Maryland, the University of Maryland Baltimore County (UMBC), Marymount University, the Corcoran College of Art + Design, the University of Michigan, Syracuse University and the Cerebral Palsy Alliance.

Together, the participants listened to guest speakers, took part in an immersive usability workshop— where they completed a range of empathy activities involving the use of crutches, visual impairment simulation glasses and gloves of varying thicknesses to simulate altered dexterity, to help gain a better understanding of what kinds of products would make a difference for people with disabilities—and worked in teams to create their own prototypes. A panel of judges, including representatives from Google, Enabled by Design, FutureGov and Adobe, awarded the top prize to “Sous Chef,” a mobile kitchen island with variable height, and the people’s choice award to “Springboard,” a device that combines a cutting board with any knife to help stabilize the food preparation process.

Participants in this exciting event include teams from:

  • NASA
  • U.S. Department of Health & Human Services
  • World Bank
  • Google
  • University of Maryland
  • University of Maryland Baltimore County (UMBC)
  • Marymount University
  • Corcoran College of Art + Design
  • University of Michigan
  • Syracuse University
  • Cerebral Palsy Alliance

“United Cerebral Palsy is thrilled to have hosted this year’s exciting and hugely successful Design-athon. Many of the prototypes built today have the potential to be fully developed, brought to market—and to change the lives of people with disabilities. In just its first year in the United States, the Design-athon has proved that it is not only a great opportunity for discussion and collaboration, but is truly an inspiration for innovation among some of our country’s top science and technology experts,” said Stephen Bennett, President and CEO of UCP. “The 2013 Design-athon is just one of the initiatives that our Life Labs team is working on, and we look forward to more incredible events, partnerships and progress in the future that help to advance UCP’s mission of enabling a life without limits for people with disabilities.”

“Enabled by Design is proud to have bought the format of the Enabled by Design-athon to the US— and of all the participants, speakers and sponsors who have helped to make it happen. This event, now in its second year, embodies what Enabled by Design is about: creating a movement for accessibility for the masses, the belief that good design can help people with disabilities live more independently and building a diverse community of people with an active interest in accessibility,” said Denise Stephens, Founder of Enabled by Design. “It’s fantastic to see so many talented and imaginative designers coming together in support of accessible design, and we look forward to working with United Cerebral Palsy in continuing to build and expand the Design-athon in years to come.”

“At FutureGov, we are passionate about innovation in public services, social problem solving and utilizing technology to facility change. Driven by our openness to new opportunities and willingness to work with others, we are excited to partner with Enabled by Design and UCP’s Life Labs for the 2013 Enabled by Design-athon. This event is a great example of the kind of work that we seek to do on a daily basis, bringing smart, creative people together to address issues in creative ways that produce immediate results,” said Dominic Campbell, Founder and Director of Futuregov. “We applaud all of the participants for a job well done, and urge everyone involved to continue innovating, designing and pushing for change.”

To learn more about the Enabled by Design-athon, please visit www.enabledbydesignathon.org.

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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.

UCP ANNOUNCES WORLD CEREBRAL PALSY CHALLENGE SUCCESS

FOR IMMEDIATE RELEASE

CONTACT:

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

UCP ANNOUNCES WORLD CEREBRAL PALSY CHALLENGE SUCCESS 

International fundraising and fitness event raises more than $180,000 in U.S., $1.6 million worldwide

Washington, DC (November 8, 2013) – United Cerebral Palsy (UCP) has announced the final results from the second annual World Cerebral Palsy (CP) Challenge, an international awareness and fundraising campaign for people living with cerebral palsy and other disabilities. In only its second year, more than 1,920 individuals from five different countries participated in the World CP Challenge—and raised more than $180,000 in the U.S. and $1.6 million worldwide.

Launched in 2012, the World CP Challenge is an international, accessible health and wellness activity that helps to promote health living while raising awareness and support for people with cerebral palsy and other disabilities. With an estimated 350 million people around the world living with a disability, and 57 million in the U.S. alone, there is a great need for both awareness and support.

The World CP Challenge brings people together, with individuals forming teams of four and challenging themselves to take 10,000 steps a day, everyday, for an entire month. Along the way, participants log their steps online, tracking their progress as their step count propels them up virtual mountains and competing against other teams from around the world. Nearly any activity, from yoga, to swimming, to physical therapy, can be converted into steps, making the World CP Challenge accessible to people of all abilities.

“The World Cerebral Palsy Challenge has proven to be a great success: in just its second year, our teams raised an incredible $180,000 in the U.S. and more than $1.6 million worldwide— enabling us to fund research, support our affiliates and provide the services that people with disabilities and their families need. We are so proud of every organization, team and individual that worked together and committed to this month-long event; their dedication is what makes the World CP Challenge, and our work for people with disabilities, possible,” said Stephen Bennett, President and CEO of UCP. “Thank you to everyone involved, and we hope to see you again next year!”

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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.

 

JOIN UCP IN CELEBRATING WORLD CEREBRAL PALSY DAY

FOR IMMEDIATE RELEASE

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

JOIN UCP IN CELEBRATING WORLD CEREBRAL PALSY DAY 

Share your ideas and help to change the world for people with cerebral palsy and other disabilities

Washington, D.C. (October 2, 2013) – Do you have an idea that could change the world for the 17 million people around the globe living with cerebral palsy (CP)? Now’s your chance to submit your idea, and it may become reality.

To celebrate the second annual World Cerebral Palsy Day on Wednesday, October 2, people are being asked to suggest something that if developed, adapted or changed, would make life easier for people with CP and other disabilities. You can film or write your idea and submit it on the World CP Day website— the only requirement is that it takes one minute or less to watch or read, and be sure to vote for the ideas you think are best!

More than 260 ideas have already been submitted, ranging from a gym modified for people with disabilities to portable, lightweight ramps to increase accessibility for individuals in wheelchairs. Last year, a team that built a solar-powered wheelchair won the top prize. At the end of October, three ideas will be selected for the shortlist—and inventors, creators and hackers will have the chance to bring your ideas to life. The best creations will compete for a share of $50,000 in prize money.

With an estimated 17 million people around the world that have CP and another 350 million people that are closely connected to a child or adult with CP, there should be no shortage of ideas. UCP urges everyone who has cerebral palsy or any disability, or is connected to a child or adult with a disability, to think about the daily challenges they face, come up with ideas to solve them, and submit those ideas online.

“United Cerebral Palsy is thrilled to be celebrating the second annual World CP Day, and we hope that you will join us and our partners around the world as we work to change the world for people with cerebral palsy and other disabilities,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “It’s easy to get involved by spreading the word, submitting your ideas and voting for the ideas you think will make a real difference for people— and maybe your idea will be chosen to be brought to life!”

To submit an idea, go to www.worldcpday.org through October 31.

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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.