UCP Mission Moments from Around the Globe
Joining in the Fun for an Accessible Makerspace Concept
(June 2014 feature)
This month’s affiliate mission moment highlights a recent collaboration between UCP’s Life Labs, Marymount University’s Interior Design Department and UCP Seguin of Greater Chicago. The partnership stemmed from Marymount’s participation at Life Labs’ first annual design-athon this past November. Ultimately, the partnership cultivated a new design concept of an accessible makerspace that could be used throughout UCP affiliate locations to help introduce individuals with and without disabilities to the maker and do-it-yourself approach towards innovation.
“To be honest, I did not know much about makerspaces when this project began,” said Casey Burke, UCP Seguin’s Director of Employment and Day Services. “But after learning more about them, including their impact on not only the individuals we serve but our entire community, their value became clear.”
A makerspace allows people to come together and create product prototypes within a community environment. With UCP Seguin’s feedback, Marymount’s design team was able to develop a design concept that is accessible, inviting, mobile and valuable to the entire community.
“An accessible makerspace is useful for everyone,” explained Burke. “Many of the individuals we serve come up with ideas all the time– and, for example, would enjoy customizing their wheelchairs and other adaptive equipment themselves at their convenience, rather than relying on technicians to come by.” Still, it was clear that the inclusion aspect was the ultimate driving force throughout the project. “We are always looking for ways to get more people in the community involved with our work and this would definitely provide a unique way of doing so,” Burke stated. “Sometimes, it can be hard to find opportunities like this that are so eye-catching and allow individuals with and without disabilities in our community to mingle on a casual basis.”
It has been nice to see what can happen when innovation, interior design and service-provider experts come together. Now that they have created something so meaningful and useful, it will be exciting to watch the conversation around accessible makerspaces continue to grow.
To read more about this project, check out the guest post on the Life Labs blog by Julie Daniel, a Master’s Interior Design student at Marymount. If you would like to learn more about UCP Seguin and how this project has played into their work, please visit their website or contact Casey Burke at email@example.com.
Rocking Adaptive Design!
(May 2014 feature)
This month, we are thrilled to highlight a story from UCP of Tallahassee. Serving individuals with a range of disabilities and their families in Northern Florida, UCP of Tallahassee provides services that include assistive technology, adult day training and behavioral services, among many others. Last year, one of their occupational therapists, Louis Tornyai, developed a side-to-side rocking chair after seeing a resident rock in this motion throughout the day in his wheelchair. Tornyai recently took this a step further, as he worked with interns at Keiser University to find a way to help this type of modification benefit others. “I got the idea that a couple of residents with strong torso rocking patterns, might be able to rock back and forth with only subtle shifts of their upper body– particularly more likely if they already had a self-stimulation pattern occurring with upper body weight shifts,” said Tornyai.
After finding an outdoor patio rocker that required minimal torso motion and zero use of one’s feet to make it swing back and forth, he worked with the interns to modify the glider. Utilizing a new workspace created by UCP of Tallahassee’s Executive Director, Jameson Dörmann, the group was able to enhance the rocker’s safety, comfort and support. The adaptive rockers have been a success, as it appears they are providing a means of self-initiative calming and are adding to the quality of people’s lives. Check out the whole story by visiting Sunrise Community, Inc.’s blog HERE! If you would like to learn more about UCP of Tallahassee, please call (850) 922-5630 or email firstname.lastname@example.org.
Man with Cerebral Palsy Takes His First Vacation– Ever!
(April 2014 feature)
Green, who has cerebral palsy and uses a wheelchair, has lived at Sunrise Community in Miami, Florida for nearly 40 years. Recently, and after a year of careful planning, Green went on his very first vacation– to Las Vegas! He stayed at the Palazzo hotel and shared the details of how his trip went:
Green says it took “about one week to plan the trip and ensure that all the details for the trip were covered. It took some research online and time on the phone with the airline and hotel to get all the details ironed out. I let the Palazzo know about all my physical needs when booking the room. They assured me that they would be able to accommodate me.” Additionally, Green found the airline to be “very helpful,” and when he arrived in Las Vegas, “they helped me off the plane and had my electric chair waiting for me.”
The hotel Green stayed at, the Palazzo, was equally accommodating. Describing the experience, he says “the room was way better than what I expected. I was on the 28th floor; my room overlooked some hotels on the strip and the beautiful mountains surrounding Vegas. I was honestly surprised because I thought the accessible rooms would be overlooking the parking lot. The room had shower bars, a roll-in shower, bars mounted on the toilet seat, a phone next to the toilet. It was completely accessible and the service in the hotel was first class. I felt like a rock star the way they treated me.”
Beyond his own travel arrangements, Green found the city of Las Vegas to be very convenient with one-way sideways, which enabled him to use his wheelchair without bumping into other people, and accessible seating at the two shows he saw. “I would rate the accessibility of Vegas to be a ten out of ten,” he says. “I did not experience any accessibility issues.”
For anyone with a disability interested in traveling to Las Vegas, Green suggests that they “call the hotel ahead of time and spell out your physical needs as they relate to accessibility. In other words, if you need an accessible shower tell them, elevated bed, toilet bars, etc. They are really happy to accommodate. Be sure to ask for help if you need it. My best tip is, if you need to travel with a personal support staff, be sure you pick someone who is outgoing and willing to try new things.”
Read Green’s full story here!
Surviving the Storm in Atlanta
In early January, a severe winter storm struck the Atlanta area, causing massive traffic jams and numerous car accidents that left many motorists stranded on the city’s highways. Caught in the storm were five clients of United Cerebral Palsy of Georgia, whose transportation had been delayed as the weather conditions continued to deteriorate. Vontana Atkins, a wellness coordinator, and Diane Wilush, the affiliate’s executive director, decided to drive the clients home themselves and unfortunately found themselves stranded as well.
Throughout the night, Atkins and Wilush bargained with fellow drivers trapped on the highway and local restaurants to get their clients food and drinks, sang songs (including the Gilligan’s Island theme song, which Wilush noted was “kind of appropriate, now that I think about it.”), to keep the client’s distracted and continued to try to get their clients home. They also kept in touch with the clients’ families to let them know their loved ones were safe. Marilyn Harvill, mother of UCP client Matt Windham, praised Atkins saying, “Von tried to keep them calm, she was very aware of keeping them warm and conserving the gas as best she could. She called 911 but nobody was able to get there, nobody ever made it.”
At one point, a hotel room was secured near Atkins’s van, but they were unable to drive even a short distance due to the snow and traffic. A plea for help went up on the SnowedOutAtlanta Facebook page by the next morning, and several individuals tried to bring supplies to the stranded van– but were unable to find it amongst the thousands of vans on the highway. By midday, the roads had cleared enough for the van to make it back to the clients’ group home, and Wilush and the two other clients with her had been picked up by another UCP employee with a four-wheel drive truck.
For more than 20 hours, Atkins and Wilush were able to keep their clients safe and ensure that they made it home despite one of the worst storms to hit Atlanta in recent history. While there has been a lot of speculation about the city’s response to the snow and how it could be improved, UCP of Georgia is already working to review their emergency planning procedures. But one thing certain: in extraordinary circumstances, UCP’s staff rose to the occasion, and we are all thankful for the dedication, resourcefulness and creativity that got everyone home safely!
Content for this story was sourced from the Wall Street Journal. The article in its entirety can be read here.
Six Word Stories from UCP of MetroBoston
For the past year, UCP of MetroBoston has worked to share the stories of individuals supported by the agency through a series of expressive photos and short, six-word phrases. The idea for conveying an entire story in just six words comes from a story attributed to Ernest Hemingway, and often cited as his best work, entitled Papa, and reads “For sale: baby shoes, never worn.” It is a great example of expressing a depth of emotion in an incredibly concise way, and coupled with photos, can be a very powerful way to tell a story.
UCP of MetroBoston has taken this concept of short but engaging storytelling and used it to provide some insight into the lives of the individuals supported by the organization and how UCP has been a part of their journeys. The result has been a collection of stories that convey an extraordinary amount of emotion, information and meaning. Sheri Wasserman of UCP of Metro Boston says, “We really wanted to do something that would grab the viewer’s attention and make them want to know more. So much can be said by a few simple words, and the result is so much more than we had originally imagined. The stories truly exemplify living a life without limits for people with disabilities.”
Here are a few of these amazing stories:
Joe is a young man who had spent many years in a nursing home following a severe accident. UCP of MetroBoston was able to offer him a place in a newly built home which had been designed to specifically meet the medical and physical needs of young adults like Joe. Joe now spends his time as a typical young man: listening to rap music, attending Boston Red Sox and Celtics games and hanging out with attractive women.
Jack and Doris never thought they would find someone who understood them or who would want to spend the rest of their life with them— that is until they met each other while receiving supports from UCP. Both say that they have found their soul mate, and will be celebrating their third wedding anniversary soon.
Barbara is an older woman who was resigned to the fact that she had to live in a nursing facility, not because of profound medical needs, but due to the fact that she was no longer able to live alone. With UCP’s assistance, Barbara was able to move out of the nursing home and now lives in a beautiful studio in an assisted living program where she has made numerous friends, takes part in daily activities, and has been able to regain the independence and pride of having her own apartment.
As you can see, six simple words can convey an enormous amount of emotion and history. Learn more about UCP of MetroBoston and their work at www.ucpboston.org.
Wheels for Humanity Expands in El Salvador
UCP Wheels for Humanity (UCP Wheels), a subsidiary of UCP of Los Angeles, Ventura and Santa Barbara Counties (UCPLA), recently announced the opening of a new office in San Salvador, El Salvador as part of their ongoing partnership with the United States Agency for International Development (USAID).
With an estimated 465,000 people living in El Salvador in need of a wheelchair but without access to one, there is an enormous need to be met in this country. UCP Wheels will be implementing a multifaceted effort to increase access to assistive technology and physical therapy for people with disabilities in El Salvador, continuing a model of mobility access first tested in Indonesia that has been globally recognized. Learn more about UCP Wheels for Humanity.
UCP Wheels Helps Those Affected by Typhoon Haiyan
Since 2003, UCP Wheels for Humanity (UCP Wheels), a subsidiary of UCP of Los Angeles, Ventura and Santa Barbara Counties (UCPLA), has worked to provide wheelchairs and other ambulatory aid to people in need in the Philippines. In the wake of the devastating Typhoon Haiyan, which injured thousands of people, UCP Wheels is preparing to send a shipment of wheelchairs to those in need– but they need help.
To learn more about how to help those who have recently become disabled in the Philippines, as well as those who, because of a disability, have been at greater risk because of this destructive storm, visit UCP Wheels’s website.
Four Friends Team Up to Make a Difference
Ben, Theo, Martin and Adrian are not your typical 13-year-old boys: the four best friends, students at Lake Mary Prep in Florida, helped create this week’s Lake Scary 5K Run/Walk for Cerebral Palsy. The four boys’ interest in such an event stems from their own experiences, as Ben has cerebral palsy– and while Theo, Martin and Adrian are quick to say CP doesn’t limit their friend or their friendship, they know the challenges that many living with disabilities face. Martin spearheaded the effort, searching for a way to raise awareness about CP or a fundraiser that the four friends could participate in. Finding no options in their home county, the boys went to their parents, reached out to their school, contacted UCP of Central Florida and the Cerebral Palsy International Research Foundation and got to work. Lake Mary Prep agreed to host the event, and the Lake Scary 5K Run/Walk for Cerebral Palsy was born! Read more about this great event.
Hope, Love and UCP of Central Arizona
Throughout the UCP network, there are many individuals and families who are striving to live a life without limits—but there is one family in particular that stands out. The story of Lori, Marcia, Apollo and Madison Alvarez and their connection with UCP of Central Arizona is one of hope, incredible progress and beating the odds.
Lori Alvarez’s pregnancy was difficult—at 12 weeks, she was told that one of the quadruplets she was carrying had not survived. At 28 weeks, doctors told her that Apollo, one of the remaining three babies, would be born with a condition called lissencephaly, also known as smooth brain syndrome. Then the doctors said a second baby, Madison, would be born with the same condition, and neither was expected to survive until birth— and if they did, their quality of life would very limited and their life expectancy would be about two years. The Alvarez family was encouraged to terminate the pregnancies, but refused, saying that they would “take them home, love them and teach them to the best of their ability.”
On February 2, 2009, Lori gave birth to three children, including Apollo and Madison, who were diagnosed with lissencephaly, microcephaly, mild cerebral palsy and failure to thrive. Lori and Marcia brought their children home and, starting at two months, began therapy exercises to ensure the best possible outcomes for Apollo and Madison. Apollo surprised everyone by sitting and crawling at one year, walking by the time he was 18 months old and eating solid foods by age three. Madison struggled with irritability and did not start crawling until she was about three years old.
The family was put in touch with Dolores, an occupational therapist at UCP of Central Arizona. Dolores and other therapists worked with both Apollo and Madison, giving Lori and Marcia exercises to do at home and teaching them some sign language—and with amazing results. Madison just recently started coloring with crayons, is overcoming her sensory issues and has learned to walk. Apollo, who suffered some seizures about 18 months ago, has regained many of the skills he lost and is making incredible progress. Recently, both children transitioned from early intervention to preschool but kept working with Dolores, who has helped with navigating the school system and providing ideas and suggestions to help them be successful.
Apollo and Madison, two children who were not expected to survive, are thriving now with the support they need to grow, functioning at higher brain levels and living very happy lives. Dolores says that the incredible results both Apollo and Madison have achieved are because of the love and commitment of Lori and their family. The geneticist and pediatrician are amazed at Apollo and Madison’s progress. Lori was very happy to share that a couple weeks ago, the geneticist said that she now expects them to have a normal life span! Their story goes to show that with love, hope, and quality services, children with disabilities can live a life without limits!
Community Rallies Around UCP Land of Lincoln
In early August, disaster struck UCP Land of Lincoln when one of their group homes was devastated in a fire. Thankfully, the home’s three residents were not home at the time, but the house and all of the residents’ possessions were destroyed.
In the wake of the fire, the Springfield community sprung into action. While the three men stayed at local hotels and other group homes, people and organizations offered their help, providing new furniture, a washer and dryer, clothes and household items to help the men recover. In addition, United Way of Central Illinois, church groups, employees at Blue Cross and Blue Shield of Illinois, and members of the affiliate’s board helped raise $10,000. Brenda Yarnell, President and CEO of UCP of Land of Lincoln, praised the incredible community response, saying “We have a very small and tight budget. It was imperative what the community did.”
This week, thanks to generous donations and assistance, the three residents were able to move into a new group home. According to the State-Journal Register, group home resident Anthony Carrell said, “The fire was devastating. We lost everything, but we’re slowly getting back on our feet.” The new home, in which each man will have his own room, is in a “nice neighborhood that welcomes families,” said Yarnell, and even includes a backyard.
TeenCP Founder Wins Outstanding Youth Award
Every year at our Awards for Excellence ceremony, UCP recognizes several groups and individuals who exemplify our mission of ensuring life without limits for those with disabilities. Among the 2013 honorees was 21-year-old Katy Fetters, recipient of the Outstanding Youth Award. A college student with cerebral palsy, Fetters is the founder of TeenCP, a blog that acts as a resource for adolescents with disabilities. Offline, she embraces her role as an advocate by volunteering at UCP of Orange County. Having previously served as a guest blogger and a speaker at fundraising events, she is now working as an intern to promote the World CP Challenge.
Such dedication has not gone unnoticed by UCP staff. “Katy has an incredible story and a great mission in her life to create awareness for cerebral palsy and to be a resource for others with CP. She is a great inspiration and role model for teens to embrace who they are and challenge perceived restrictions and barriers in their life so they can live a Life Without Limits,” said Elizabeth Eckman, the marketing and development coordinator at UCP of Orange County who nominated Katy for the award.
Katy’s describes the honor as “humbling,” and adds that “being recognized at that magnitude was eye-opening.” In the future, she hopes to include other teens’ perspectives on her website, so that she might further her mission of “encouraging others to leave their comfort zone and stay true to themselves.”
Adventure Fitness Trail of UCP of Central PA
At Adventure Park in Mechanicsburg, Pennsylvania, kids with a wide range of abilities can have fun together on its adapted and inclusive playground. Now, thanks to the efforts of UCP of Central Pennsylvania, community members will have the chance to get active amongst the beauty of nature. Opening July 6th, the Adventure Fitness Trail will consist of a mile-long path that is fully accessible to older citizens and people with disabilities.
Hikers thirteen years of age or older will also have access to numerous exercise stations, which are located throughout the trail and challenge users to work their muscles. Energi Stations demand more rigorous, full-body movement, while LifeTrail Stations are modified for use by seniors and people with less mobility. Individuals looking to improve their flexibility can roll up to the wheelchair-accessible stretching platform, then switch to strength training by visiting the stations devoted to shoulder or tricep exercises. From upper-body cycling to push-ups, trail walkers of any ability level will be able to choose from a plethora of invigorating activities.
The grand opening will take place during the UCP-sponsored Jazz in the Park event, which will feature live entertainment, free food, and child-friendly games. In the future, officials plan to expand the park by constructing a volleyball court to accompany its existing sports fields.
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. This year, the award was presented to Ability Connection Oklahoma for their program, New Voices.
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.
Through the New Voices program, Ability Connection Oklahoma is making it possible for children and adults to gain more independence and confidence. Since 2011, the program has paired more than 170 people with iPads. Some children are learning to speak for the first time or communicate with teachers, family and friends. Enabling communication through technology allows individuals 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 Power of Martial Arts
More than 14 years ago, black belt instructor Sensei Martin Williams decided to teach a class for students with disabilities. People were eager to take the class, and today the program at UCP of Hawaii’s Kuwili Martial Arts Center has grown to 97 students.
Students learn Hapkido; a form of martial arts focusing on the core tenants of courtesy, integrity, perseverance, self-control, and indomitable spirit. Not only are these important components of practicing martial arts, but they also translate into effective skills for the workplace. One parent remarked that having his son take Hapkido classes “has been a great experience of growing in confidence, competence, understanding, and strength.”
The students take leadership positions within the center; setting their own goals and working toward belt promotions. People look forward to coming to class each week. The Kuwili Martial Arts Center provides a positive impact in students’ lives where they not only look forward to class each week but also gain initiative and independence.
Fashion Show Celebrates the Beauty in Us All
This past February, to celebrate Valentine’s Day, UCP of Georgia in collaboration with K&G Fashion Superstore hosted their second annual “Share the Love” Fashion Show & Luncheon – an event to celebrate the beauty in us all.Men and women with disabilities modeled outfits from K&G for more than 200 guests and raised more than $22,000 to support UCP services for individuals with disabilities throughout Georgia. Check out photos from the runway!Read more about the Fashion Show and learn more about UCP of Georgia on their website.
Cure Pity – Take the Pledge Today!
Last August, Gillette Children’s Specialty Healthcare(Gillette) joined UCP as its newest affiliate and the first children’s hospital to join the UCP network.
Located in St. Paul, Minnesota, Gillette is internationally recognized for its work in treating children who have disabilities and complex medical conditions with high quality medical care in a compassionate environment as well as working to change the way people view children with disabilities.
As an extension of their commitment to change perceptions people have of those with a disability, Gillette introduced theCurePity campaign.
The campaign spreads the message that children with disabilities don’t need pity; instead, a positive attitude and understanding can make a world of difference. More than 5,000 people have signed the online pledge to CurePity. Learn more about thisinitiative; meet Lexi and Logan, two of the children the hospital serves; and pledge your support at curepity.org.
Affiliate Mission Moment: California Access Grant Bolsters Efforts at
UCP of Sacramento
This December, UCP of Sacramento and Northern California was awarded a $25,000 grant from The California Communications Access Foundation to purchase assistive technology for its adult day programs and Autism Center for Excellence at Sacramento State. The grant was used to purchase 11 iPads, one SMART Table, and one SMART Board.
The technology is being shared between both groups, with the Autism Center using an iPad to reinforce good behavior, and the SMART Table to build social skills. UCP’s adult day programs are able to use the iPads to increase their reading and math skills and improve communication. The SMART Board allows the affiliate to teach interactive lessons that are educational as well as to improve participants’ range of motion and hand-eye coordination.
“We’re very thankful for California Communications Access Foundation’s generous gift that is helping people with developmental disabilities access the educational resources needed to live independent and meaningful lives,” said Doug Bergman, president and CEO, UCP of Sacramento and Northern California to the Sacramento Press about the grant.
The goal with these new devices was to help create community, improve communication, living and motor skills, language development, and group skills. These items have succeeded in these areas and more, proving the power of assistive technology for people with disabilities.
Eagle Scout Gives Back to Local UCP
Last month, during the season of giving, 17-year-old Brendan Perlinger decided to use his efforts to give back to an organization that has helped him in the past, United Cerebral Palsy of Greater Kansas City. Brendan has cerebral palsy and has worked in the past with UCP of Greater Kansas City. Through his own experience with UCP, he knew of their excellent work, so when it was time to come up with project to complete his Eagle Scout project requirement he knew the organization with which he most wanted to work.
“My goal was to bring attention to a lesser-known need in my community as well as to fulfill my Eagle project requirement,” Perlinger told his local Fox News affiliate, which did a story on his project. He made personal appeals to members of his church to collect household goods and personal items, as well as raising $1,300 to buy additional items for adults with cerebral palsy. “Because United Cerebral Palsy has helped me in the past, I wanted to find a way that I could give back to them,” he said. “I am very happy with the support that my parish has given me with my Eagle project. I think because of my disability, people were more willing to donate”, he added.
Perlinger’s parents called UCP of Greater Kansas City’s Development Coordinator, Debbie Niemann, to share his story and to Niemann’s delight, what he had collected. Niemann had the perfect place to use all of Perlinger’s wonderful donations as several residents had recently moved from a group home into Integral Senior Living settings in apartments and were in need of many items. “Brendan not only gathered what they still needed, but took it to the next level, so each resident had items that created a feeling of coziness and home, rather than just a place to live. How wonderful to see a teenager identify a need, organize a project, and help so many people successfully,” reflected Niemann on the donations. She continued, “What really grabbed me, though, was that we live in a world of excuses why we haven’t or can’t help. Brendan, who is faced with enormous and justifiable challenges, makes no excuses. He saw an opportunity to help, used the tools he has to get the message out and coordinate a collection, and significantly helped many people.”
Perlinger is truly the personification of life without limits as his disability does not hold him back but rather enables him to help others in a unique and admirable way.
To learn more about Brendan Perlinger, read the story about his amazing work.
To learn more about UCP of Greater Kansas City, visit their website.
The Gift of Sight
This fall the Therapy Team at United Cerebral Palsy of Orange County (UCP-OC), with the help of Abbott Medical Optics, had the opportunity to participate in a new therapeutic training for Cortical Visual Impairment (CVI). This unique educational experience was part of a larger project to launch UCP-OC’s initiative with the Gavin Herbert Eye Institute at UC Irvine to gain a greater understanding of how to serve and care for children affected by CVI associate with cerebral palsy.
According to Dr. Christine Roman-Lantzy, who led the training, CVI is defined as a “visual impairment that occurs because of brain damage…[visual impairment] exists not in the structures of the eye or optic never, but in the visual processing centers and visual pathways of the brain”.
Additionally, some UCP-OC advocates had the opportunity to join Dr. Roman- Lantzy at a luncheon hosted by Dr. Jennifer Simpson (pediatric ophthalmologist at the Gavin Herbert Eye Institute), to gain a broader understanding of CVI and how to support this groundbreaking West Coast initiative.
The UCP-OC Visual Impairment Early Intervention Program is anticipated to open in Spring 2013. Their goal for this innovative program is to help improve the diagnosis and rehabilitation of infants who are at risk for vision complications in relation to cerebral palsy.
Can You Hear Us?
The National Forum on Disability Issues took place on September 28, focusing on the disability positions of the 2012 Presidential Candidates and bringing attention to the issues that are facing the disabilities community in the upcoming election.
In honor of this historic event, UCP of Greater Cincinnati decided to get involved with the creation of their own video, “Can You Hear Us?”. The video features members of the UCP affiliate calling for the politicians to hear their voices, and make sure they are not forgotten in this upcoming election. The video was written and recorded by students in the Academy of Technology Advancement at UCP of Greater Cincinnati.
“The message is simple but we hope the end result is powerful,” said Executive Director Susan Schiller. “The disability community wants to be heard this election, and they want their rights and futures protected. The students took extreme pride in making this video and are grateful to everyone who takes the time to watch it”.
The video helps to put a face to these discussions and issues, reminding the public of the people affected by political decisions.
To learn more about UCP of Greater Cincinnati, visit their website.
Gone Fishing (October Feature)
For many people with disabilities who require wheelchair assistance, there is a limited opportunity to participate in an outdoor activity such as fishing. This summer that changed for the members of UCP of Oregon and SW Washington, with the creation of the Drano Lake ADA Fishing Platform. The platform, which opened in July, was “constructed to benefit anglers of all ages with limited mobility” according to Little White Salmon National Fish Hatchery, who created the platform.In late August, UCP of Oregon and SW Washington, as well as other members of the U.S. Fish and Wildlife Service, were invited to come experience the platform themselves, and they jumped at the opportunity. Twenty participants along with support staff spent the morning fishing in Drano Lake, and after a successful first half of the day; they went on a tour of the Little White Salmon grounds to see the fish hatchery itself.The reactions from participants were overwhelmingly positive. It has been over since the trip the participants are still talk about how great it was and are looking forward to their next visit. UCP of Oregon and SW Washington already has plans in motion for another trip next year and hoping to increase the number of participants.The trip was made possible in part thanks to Brian Lawler at the U.S. Fish & Wildlife Service who helped arrange the outing. Providing rangers who afforded 1 to 1 support for everyone on the trip and the coordination to have two of the top fisherman in the state of Oregon to help participants catch fish.Read more about the trip on the Fish & Wildlife blog and learn more about UCP of Oregon and SW Washington.
Spread the Word to End the Word
This summer Camp Easter Seals UCP, in association with Easter Seals UCP North Carolina & Virginia, decided to join the campaign for “Spread the Word to End the Word,”the nationwide campaign to end the use of the words “retard” or “retarded”.
To show their support for this cause the campers and staff created an inspirational videoencouraging people to focus on people’s abilities rather than labels. The idea to make a video came from Assistant Camp Director Whitney Civitts, who also had the creative idea to use the cards to share their message. Along with Civitts, campers, staff, and volunteer videographer Chris Hale came together to collaborate on this project.
The video focuses on all the abilities of the campers and what they can do, showing that they live life without limits. Camp Director Alexander Barge said, “We hope that we are able to tactfully and entertainingly inform people of politically incorrect terminology. We hope that people are able to see that it means more to our campers than simply just another word to avoid”.
According to Barge, the video has received a lot of positive reactions with the majority of people wanting to share the video with others. Share the video with people you know and help spread the word to end the word!
Learn more about Easter Seals UCP North Carolina & Virginia.
Breaking Barriers with Assistive Technology
When Tosh Scutt, a 10-year-old autistic boy, started at the Cypress School two years ago he was non-verbal, suffered from aggressive outbursts, and was unable to participate in any pre-school curriculum activities. This all began to change once he began working with an iPad, and thanks to UCP of the North Bay and the UCP Bellows Fund, this April, Tosh received an iPad of his very own.
The UCP Elsie S. Bellows Fund is a nationwide program operated by UCP that provides funds to individuals with disabilities for assistive technology equipment. Recipients of the fund are individuals who have been recommended by UCP affiliates. People may apply for anything from specialized kitchen utensils to wheelchairs, operating under the assistive technology definition: “any piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain or improve functional capabilities of individuals with disabilities”.
When Tosh started at the Cyprus School there was one iPad for the entire class of students, all of whom used the technology as part of their curriculum. In the beginning, Tosh used the iPad once a week with his speech therapist to work on speaking, reading and math. His skills began improving, but with limited access to the technology, it was clear that Tosh required an iPad of his very own to see true results. When his gift arrived, Tosh’s eyes lit up and he remarked “it’s mine?”. This one comment illustrates the impact the iPad had made on him in a short time, and his progress has only increased since then.
Since receiving his iPad, Tosh has begun writing short stories based on his social activity of the day using the Storyboard application, and is able to read his stories to his fellow classmates. Just recently Tosh’s dad had tears in his eyes when the special education teacher, Jennifer Finney, told him that Tosh had independently written “the girl is pretty” on his iPad.
The progression of Tosh from being non-verbal to writing his own sentences is a true testament to the impact that this assistive technology can have. Tosh’s progress not only impacts his education, but his ability to interact in all social activities and communicate with others. It is evident that this is only the beginning for Tosh and that he will continue to move forward towards a bright future.
Learn more about the programs at UCP of the North Bay.
UCP of Central Pennsylvania’s Journey of Hope
In June, UCP of Central Pennsylvania welcomed Hope Johnson as its Community Relations and Development Intern. Hope, who has athetoid cerebral palsy, in conjunction with her daily intern duties, will be blogging about her internship experience throughout the summer in her blog “A Journey of Hope.” While typing with only one toe, she will share her experiences and reflective thoughts on her internship. Hope said that through her blog she wants to share the message that “[people] can reach any goal if they are determined and persistent. Success does not happen in a day, a month, or a year, but over time.”
Given Hope’s unique working style, she primarily does her interning and blogging from home, coming into the office for staff meetings as needed, but this is not to say that her presence is not felt in the office and that she has not had a remarkable impact on the workplace. Hope’s supervisor and UCP of Central Pennsylvania’s Marketing and Communications Coordinator, Lynda Bowen, described Hope best when she said “to say she’s an inspiration would be akin to saying that Mt. McKinley is an uphill climb.” When other colleagues at UCP, Lisa Hasselbrook and Karen Beaston, speak of Hope they use words such as “uplifting,” “vivacious” and “confident,” and from reading her blog and hearing from Hope, it is clear why.
“Since I have first-hand knowledge about coping with a disability, I feel I can give voice for those who are less fortunate. I have been given so many gifts and opportunities that I feel it is essential to share those opportunities with someone who is motivated, but is trapped inside his or her body.” Hope recounted of her internship. Hope’s drive and passion for this internship and life are evident, and her mind is always on how her life and opportunities can benefit others.
According to Hope, she was drawn to working at UCP given her previous experiences with the organization believing that the organization “embodies ‘life without limits’ perfectly.” Hope has many goals and plans for herself, which she aims to accomplish through her internship and beyond. The experience she most hopes to gain from her time at UCP is the chance to “give a voice to those who do not have one through my writing.” Hope’s ambitions also extend past her internship, as she hopes in the future to become more aware of the issues that individuals with disabilities face.
When she is not working at UCP of Central Pennsylvania, Hope attends Messiah College and will continue her amazing accomplishments by being their first nonverbal, nonambulatory graduate. Learn more about Hope and follow along on her journey by following her blog!
Learn more about UCP of Central PA.
UCP of the Golden Gate & San Francisco Giants, “Fans for Life”
UCP of the Golden Gate (UCPGG) was in attendance last month at the Giants vs. Oakland A’s game to promote disability awareness with a “Fans for Life” appearance at the game. UCPGG partnered with Sharon Forster, a five-decades-long Giants fan with cerebral palsy, to recognize the Giants for their commitment to ensuring AT&T Park is accessible to all of their fans.
Between innings, a short feature video was played and the first 10,000 Community Clubhouse visitors were given a “Fans for Life” wristband. For those who weren’t able to get a wristband at the game, UCPGG is accepting donations, which will get you your very own set of wristbands.
Watch a two minute video featuring interviews with Sharon Forster, a lifelong fan of the Giants, Robert Huffman, her cousin and caregiver, Albert Jaimes, the Giant’s community relations manager, and Barry Gardin, president of UCPGG.
Learn more about UCPGG and “Friends for Life”.
For nearly a year, UCP of NYC and Boswyck Farms have been collaborating to expand UCP of NYC’s hydroponics classroom and develop plans for a program. In the hydroponics classroom, program participants learn about growing fresh fruits, vegetables and herbs indoors, in a windowless and soil-free environment. The ribbon-cutting event marks UCP of NYC’s readiness to take training and growing to new heights.
The grow room, which is outfitted with fully accessible systems for individuals with a range of disabilities, is currently producing nearly 60 heads of lettuce, with nearly 60 seedlings growing in rotation. The program participants are also growing tomatoes and chili peppers, and looking forward to introducing herbs and other greens to their garden.
Participants in the hydroponics program are learning about innovative solutions for farming as well as the benefit of fresh fruits and vegetables for improved health and nutrition. The classroom teacher and specialists from Boswyck Farms work directly with participants to research equipment and tools, learn about care for the plantings, and plan new growth projects while promoting concepts of sustainability and healthy living through hydroponic gardening.
Read more about the classroom’s celebratory ribbon cutting ceremony and learn more about UCP of NYC and their hydroponic classroom.
Infinitec – infinite potential through assistive technology
UCP of Greater Chicago introduced Infinitec (infinite potential through technology) as its technology program, which aims to advance independence and promote inclusive opportunities for individuals through the use of technology.
With the creation of the Infinitec website, users are provided with resources, an online classroom, webinars, access to experts and more. The initiative focuses on four primary areas of service:
- Training and Education includes face-to-face and distance learning for professional development.
- Information Services consists of extensive web and hard copy resources. An additional innovative resource is InfiniTEXT, an online, accessible instructional materials collection which provides access to over 11,000 digital text files for qualified K-12 students with print disabilities.
- Access to Expertise includes access to highly experienced technical assistance staff.
- Equipment Services includes discount purchase programs and a lending library of equipment for the state of Illinois.
RESPITALITY Program – Reenergizing Families
UCP of Los Angeles, Ventura and Santa Barbara Counties has been providing families with much needed mini ‘vacations’ for almost 25 years through its RESPITALITY Program.
The UCP RESPITALITY Program offers parents of children with special needs the opportunity to get away for a relaxing weekend. Parents are given the gift of free weekend accommodations at a local partner hotel and for those who do not have their own sitter, UCP will make every effort to provide a qualified respite worker to take care of the children in their own home at no cost to the family.
RESPITALITY weekends provide couples and single parents a chance to get away and have a much-needed break; serving on average 70-80 families each year.
Learn more about UCP of Los Angeles, Ventura and Santa Barbara Counties and watch a video on what RESPITALITY means to the Rosen family.
New, Affordable, & Accessible Housing
UCP of Delaware introduced Garrett House on January 31. Mayor James Baker attended and helped dedicate the new building that will provide new housing for people with disabilities in a historical building, Garrett House in Quaker Hill, Delaware.
During the mid-1990s, the original building had deteriorated badly. The City of Wilmington gained control and boarded it up until UCP acquired the building from the City to create new housing for people with physical disabilities.
The lack of housing for people with disabilities has long been known in Delaware. In 2003, Governor Ruth Ann Minner started the Commission on Community-Based Alternatives for Persons with Disabilities. The Commission identified housing as a goal. IRI Executive Director Larry Henderson asked whether the City of Wilmington had a property that both agencies could develop as new, affordable, and accessible housing. The City recommended Garrett House, and donated the building and property to the project.
UCP became owner of the building, and took on the job of fund-raising to renovate the original building and to construct an additional number of apartments.
The building was in great disrepair with the rear of the building havingfallen down, aroof filled with holes, and years of water damage. The interior was unusable and needed new floor support for structural integrity. The front brick wall of the three stories were in danger of falling into the street. The goal to create seven accessible apartments as housing for residents with disabilities would be a fund-raising challenge with an $1.8 million price tag.
Since Garrett House is located in the Quaker Hill community, the historical nature of the building also had to be preserved, and new construction would be required to compliment the original design, especially the windows and the lines of the building.
The capital funding for Garrett House came from a grant from the US Department of Housing and Urban Development (HUD). Additional funding came from the City of Wilmington, the Delaware State Housing Authority, the Delaware Division of Natural Resources and Environmental Control (DNREC), New Castle County, JPMorganChase, Bank of America, First State Community Loan Fund, Delmarva Power, the Longwood Foundation and Crystal Trust.
Garrett House was completed in December 2011, and includes three floors and an elevator. All interior doors are wide enough for those who are wheelchair users, and each apartment has its own washing machine and dryer. The building has two accessible means of entrance and exit, and a parking lot with five parking spaces for those with wheelchair accessible vans.
Garrett House will provide independent, residential apartments for adults with physical disabilities who meet federal income guidelines. The apartments will be open to people with any physical disability, not just those who have Cerebral Palsy. All of UCP and IRI’s programs are open in this manner.
Because it was funded with a HUD grant, Garrett House comes with a rent subsidy for people with disabilities who are low income.
Read more about Garrett House and watch the video highlights from the dedication atNewsWorks.
Click here to learn more about UCP of Delaware.
Elvin Alvarez is not your typical 26-year-old. Ask anyone at Miami Cerebral Palsy (MCP) Residential Services — a program run by UCP of South Florida — and you’ll quickly learn that this young Colombian is a star in his profession a rock-solid Direct Support Professional(DSP) who also is now a Residential Services Coordinator. Part of his job includes training others to become DSPs — he’s that good!
Consider these Elvin Alvarez milestones:
- Earned a Bachelor of Arts degree in Psychology with a minor in Organizational Psychology from the Universidad Tecnologica de Bolivar in Colombia, South America at the age of 20;
- Among a select few nationwide DSP-Cs who participated in the formal portfolio submission review and critique process for DSP-Registered seeking to gain DSP-Credentialed status; and
- First DSP and MCP employee to earn DSP-Credentialed status from the National Alliance for Direct Support Professionals (NADSP).
Alvarez’s thirst for knowledge and accomplishments endure still. In the fall of 2012, he begins working on his Master’s in Behavioral Analysis at Florida International University. “Then I’d like to start work on my Ph.D, maybe in Clinical Psychology,” Elvin says. “I am motivated, and always have been, to continue learning, to continue my education. Otherwise I would not be happy.”
Elvin came to MCP Residential in 2007 when he left his homeland in Colombia to work in the United States. He found MCP and didn’t know if he’d like the work. He did. Alvarez began as others do – as a DSP Apprentice – and was assigned to the Braddock facility, which supports 24 people with varying disabilities. Today he is the Assistant Administrator at Braddock, but works daily with clients, trains DSPs, and at heart, remains a DSP in spirit and in is normal work day.
KellenHassell is the Braddock Facility Administrator and Elvin’s boss. Hassell says this about his young Assistant Administrator: “One of the things that everyone can agree upon is that Elvin is absolutely just fun to work with and be around. He’s confident and secure and takes his role supporting individuals with disabilities and our staff very seriously.”
Hassell remembers a situation that he says exemplifies Elvin’s maturity and poise under pressure. In February 2009 one of the agency’s vehicles was carrying four MCP Braddock residents on an outing. Elvin was in the car behind them. Another car ran a red light and plowed into the MCP vehicle.
“It was a pretty horrific accident that resulted in some serious injuries. Elvin was one of the first people on the scene, intervened, stepped-up, kept his composure amongst the chaos, and played a key role in relaying critical information to our Executive Director and to the EMS/911 Rescue personnel for the four individuals and staff under his supervision,” Hassell recounted. “He had valuable and key information for the paramedics about how to deal with our clients and their disabilities. Once those four individuals came back to our facility, Elvin worked very closely with our interdisciplinary team and medical department to support the full recovery of those who sustained the most severe and extensive injuries.”
Hassell added this: “He enjoys taking charge in a crisis situation when things don’t go according to plan. He doesn’t panic, he keeps his composure, he doesn’t take things personally, and he really seems to respond very well under pressure and enjoys taking on that ultimate responsibility.”
During National DSP Recognition Week, the Florida Association of Direct Support Professionals (FADSP) honored him as a “DSP Making a Difference.”
When you ask Alvarez about his primary responsibilities, he gives you a list of the top 12, and among those are: works with families and outside providers….maintains all client information and records….conducts quality assurance monitoring….helps with staff development and training and is a reviewing officer for DSPs….on call 365/24/7 for anything that comes up….participates as On-Duty staff on a rotating basis on weekends and holidays and is Officer on Duty for weekends and holidays.
Alvarez’s motivation to learn also included the College of Direct Support (CDS) curriculum. “We have no training like this in my country. I enjoyed the CDS curriculum because it was something additional to all of the training components that I did once I was hired at MCP. I really liked all the courses because they show ‘the big picture’ of what DSPs need to be doing to provide great supports. Also, it was important because I learned additional things I did not learn in my normal training.”
This matches his passion for becoming a DSP-Credentialed through NADSP. “When I first read about the NADSP credentialing program (DSP-R; DSP-C; DSP-S), I said to myself I would become a DSP-C,” he explained. “It was not an easy task, but after several workshops I understood the right way to create portfolios, and then I could complete my DSP-C application package. It was fun doing this. It made me think beyond just providing services to individuals with disabilities. Currently, I am helping (coaching) DSPs at MCP to do their DSP-C application packages.”
Hassell described one other problem that Alvarez solved. For a while, MCP had struggled with creating, organizing and maintaining a stable group of On-Call DSPs to step into roles in a last-minute or emergency basis. He described the system that was used was “inconsistent and not always efficient or maximized staff talent or effectiveness.”
In stepped Alvarez, who had come to understand the need for stability in the lives of those they support. “Looking at this problem with a big-picture mentality in that it was impacting nearly all MCP residents and staff, Elvin was able to attack it and solve the problem employing a great attention to detail and by remaining organized,” Hassell said. “He became the ultimate gate-keeper for the On-Call staff at the Braddock Facility. He created a simple, yet perfectly designed system of organizing the On-Call staff schedules at our Braddock Facility by working 1:1 with our Residential Service Coordinator supervisors on a weekly basis in order to plan ahead for the need for On-Call and additional fill-in staff based on what is happening in the individuals’ lives at that time and also planning for the unexpected by allowing for free blocks where On-Call staff would be available in the event of a last-minute change or emergency.”
The result? Alvarez’s system matched On-Call DSPs with clients they knew and who the people being supported knew.
“The bottom line is that Elvin was able to essentially see both sides of the issue. Unlike those who favor one approach over the other, Elvin has shown increasingly that he is not wedded to one particular mode of conceptualizing or solving a problem,” Hassell added. “Those of us who know him really well see where he typically falls on an issue, but he has demonstrated an ability to literally use both his left brain and his right brain (without prejudice) in order to work to implement whatever is necessary, whatever the situation demands – not what he arbitrarily prefers. That’s another extremely significant way that Elvin’s maturity as a person and professional greatly impacts us at MCP.”
He began as a DSP. Today, he manages and helps train DSPs and down deep he’s still a DSP. “We make a difference in their lives,” Elvin said. “That’s what being a DSP is all about. It’s simple.”
Miami Cerebral Palsy Residential Services, Inc., is an affiliate of UCP of South Florida selected as part of the Top 125 Companies to work for by Training Magazine for four consecutive years.
It was New Years Eve when new parents Frank and Geri Kate got the life-altering news. Their son, Granden, had been diagnosed with Jeune syndrome, a genetic order affecting the growth of long bones.
Frank and Geri Kate struggled watching their son’s slow development. Jeune syndrome affects the rib bones, and is a restrictive lung disorder. Granden also had to use a feeding tube for nourishment. He couldn’t spend any time on his belly, which slowed his physical development.
Frank and Geri decided to bring Granden to UCP to learn more about his disorder. “It’s really empowering to have knowledge, as compared to feeling helpless,” said Geri.
UCP of Orange County provides physical therapy to Granden, helping him learn to roll over, stand up and walk. He also receives feeding therapy, learning to eat so he gets enough calories through his mouth to be able to remove his feeding tube. Before therapy, he hadn’t used his mouth muscles to eat, so it was difficult for him to form words, and this therapy is an important step for him in learning to speak.
According to his Frank, “Despite his challenges every day, he is one of the happiest children we’ve ever had the pleasure of encountering.”
Sixty percent of Jeune syndrome patients don’t live past two years of age. Thanks to the care he receives at UCP, Granden just celebrated his second birthday.
“If we were not able to take Granden to UCP, we would have just been on a waiting list. And while we spent time on that waiting list, he would have just fallen further and further behind other children of his age,” said Frank.
With UCP’s help, Granden is truly living a life without limits. Click here to learn more about UCP of Orange County.
UCP Helps City Resident Achieve Dream
UCP of Central Maryland was recently featured for their role in assisting Wayne Chambers to live a life without limits. Below is just a brief excerpt from the story but you can read the entire piece here.
Wayne Chambers was 15 when he suffered from a drug- and alcohol-induced coma that resulted in spastic quadriplegia and legal blindness. Today, Chambers is 27 and more mobile than he ever would have expected 12 years ago, thanks to United Cerebral Palsy of Central Maryland.
With the support of UCP and its staff in Cumberland, Chambers is now able to achieve his newfound dream of sharing his message to youths…
Chambers lives in one of UCP’s residential assisted-living units in Cumberland with two other people with disabilities. The Residential Services program provides barrier-free housing, personal care assistance, and life-skills training for adults with disabilities. Each home is modified to ensure accessibility and is staffed 24 hours a day, seven days a week by UCP professionals.
Click here to learn more about UCP of Central Maryland and how to get involved.
The Cerebral Palsy Alliance’s is one of UCP’s international affiliates based in Australia. The affiliate launched The Cerebral Palsy Challenge as an eight week team activity that began on September 6 and runs through October 31.
The Challenge requires participants to form a team of four where each person then tracks their daily step count (by wearing a pedometer) or other fitness activity on a personalized webpage. Participants are not limited to walking but can also track activities such as running, cycling, swimming and a number of other activities – including activities suitable for individuals with a disability.
Each team selects a division to enter based on the fitness level of Team Members. There are three divisions to choose from, each in the form of a different ‘virtual mountain’ that the team needs to climb by the end of the Challenge.
Each day, when team members enter their steps, the team will progress up its virtual mountain. The aim of the Challenge is for each team to reach the top by the end of the eight week period.
Click here to learn more about the challenge and The Cerebral Palsy Alliance.
Artwork Credits: Cerebral Palsy Alliance
Congratulations to UCP/CLASS on 60 Years of Service
On September 12, UCP/CLASS in Pittsburgh, Pa. celebrated 60 years of service to the community. The landmark anniversary was celebrated with a ribbon cutting ceremony and festivities at their newest facility in Swissvale.
UCP/CLASS offers a variety of individualized services ranging from independent living skills training in the classroom to the community-based case management for social, recreational and residential supports.
To learn more and find how you can help support UCP/CLASS visit: http://www.ucpclass.org.
Camp Kelley Creek
Three years ago, UCP of San Luis Obispo started a summer camp that has become a popular destination. Camp Kelley Creek is a week long summer camp for adults with developmental disabilities. The program is designed to provide a fun outdoor experience and positive environment for each camper. Each year they have approximately 70-80 campers and in fact, this year, camp was completely sold out! and provided a memorable experience for 85 lucky campers! Daily activities for the 85 lucky campers included (but are not limited to): swimming, arts & crafts, nature excursions, music & movement, and evening campfires.
To learn more and find how you can help support UCP of San Luis Obispo and Camp Kelley Creek visit: http://www.ucp-slo.org.
UCP Wheels for Humanity
Since 1996, UCP Wheels for Humanity has helped more than 50,000 people with disabilities in more than 68 developing nations gain increased mobility and dignity. Watch the story of just one life that has been impacted through this program.
To learn more and find how you can help support UCP Wheels for Humanity visit: http://www.ucpwfh.org.
Check out UCP of Central Florida on the cover of the July publication of Orlando Family Magazine. Learn more about their programs and services at: http://www.ucpcfl.org.
Great article on UCP of Greater Sacramento’s Autism Center for Excellence and how it is breaking barriers by helping to improve social skills of autistic children. Visit http://ucpsacto.org/programs-services/autism-center-for-excellence-a-c-e/ to learn more about the program.
UCP affiliates around the globe are accomplishing great things every day. Take a peek at what they’re doing.
Are You Familiar with the Bellows Fund?
The Bellows Fund is a national program operated by UCP that provides assistive technology equipment to individuals with disabilities. This program is available only through UCP affiliates.