UCP of Huntsville & Tennessee Valley Consumer Spotlight: Meet Chloe

Jennifer and Joseph Bush of Huntsville, Tennessee describe their daughter, Chloe, age 2, as a bright, sweet, loving and determined little girl who is trapped inside of a body that is experiencing muscle atrophy.

Diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a terminal illness, Chloe has endured complete respiratory failure and is now permanently ventilator-dependent. Her muscles are too weak to move, including the facial muscles that once allowed her to smile.

However, Chloe's "muscles continue to get weaker, but her mind remains bright and her intelligence is completely unaffected by the illness," Jennifer explained. "She is my inspiration and she continues to show me and all who meet her that happiness and contentment are all a state of mind."

Chloe began receiving UCP services in August 2007 through the Early Intervention (EI) program at the UCP of Huntsville and Tennessee Valley affiliate. Jennifer and Joseph agree that the physical, occupational and speech therapies Chloe receives have been very beneficial for their daughter.

For more
early intervention (EI) resource information,
please visit MyChildWithoutLimits.org

"We have received help and lessons from all of the UCP therapists on how to keep Chloe stimulated both physically and mentally," Jennifer said. "They have provided T.A.S.C.-type toys. They have kept Chloe's muscles and joints growing properly, despite her inability to lift a finger on her own, through physical therapy and occupational therapy. Also, I have received resources through UCP's EI Service Coordinator Jill Stewart who continues to help with our family and individual needs."

Because Chloe is unable to participate in weekly playgroup at the UCP Therapy Center, former UCP Special Instructor, JJ Jayne brought a special playtime experience to the Bush's home.

"We enjoyed our time with JJ thoroughly," Jennifer recalled. "Chloe would smile so big when she saw JJ come through the door. What a joy it was for her that a non-family member was coming to PLAY instead of just for therapy."

"UCP has absolutely been a valuable resource for our family," Joseph added. "Thank you, UCP [of Huntsville and Tennessee Valley], for all you've done for us."

The Bush family cherishes each day with Chloe and is sharing her life's journey with others at Chloe's SMA Angels and Caring Bridge Web sites. Jennifer hopes here to also share the very important life lessons learned from her journey as "Mommy to Princess Chloe."

"It isn't about how fast or physically strong you are," Jennifer explained. "It isn't about having the ability to speak, play, ride a bike or even change positions on your own. Happiness is waking up to see another day, to go ride in your wheelchair while Mommy pushes as fast as she can, to see your favorite cartoons, to be read your favorite stories, and to be with family and friends."

To learn more about all UCP of Huntsville and Tennessee Valley programs and services, please e-mail therapy@ucphuntsville.org or call (256) 852-5600.

Do you have a story that you would like to share with the UCP affiliate network that you would like to be showcased here at UCPeople? Please submit your article via e-mail with photographs to Will Hull at ecoordinator@ucp.org.

Make the Most Out of the Independence Day Congressional Recess – Help Get Long Term Services and Supports in Health Care Reform

Congress is in the process of putting together health care reform legislation. Many advocates in the disability community desperately want long term services and supports to be addressed as part of health care reform. People with disabilities and their supporters must communicate this view directly to Congressional offices right away!

Most disability advocates and supporters have been focused on fighting severe cuts to state budgets for developmental disabilities services for some time now. This is exactly why your voice is so important now – to help Members of Congress understand the connection between state Medicaid budget crises and the need to include sustainable long term care financing and program improvements in federal health care reform legislation.

In particular, people with disabilities need you to bring this message to Members of Congress who serve on the key committees that will be considering health care reform legislation:

• House Energy and Commerce Committee
• House Ways and Means Committee.
• Senate Health, Education, Labor, and Pension (HELP) Committee
• Senate Finance Committee

» Spread the word! «
» Find your Representative «

» Haven't written your representative yet? «
Act Now

Take Action:

Many Members of Congress will spend the weeklong Fourth of July recess in their home districts. Please participate in one or more of the following over the Independence Day recess between Saturday, June 27 and Saturday, July 4:

• Town Hall meetings sponsored by your Members of Congress. You may be able to find a list of town halls on your Senators' and Representative's Web sites. Locate your Senators' Web sites by selecting your state at the top of http://www.senate.gov/ and your Representative's Web site by entering you zip code at the top of http://www.house.gov. If you cannot locate this information on the Web sites, please call their main offices and ask to speak to the scheduler.
• In–district meetings with your Members of Congress. Please contact you local Members offices NOW to schedule a meeting.  Guidance on requesting in-district meetings is usually provided under a "Constituent Services" section of your Senators' and Representative's Web sites. Again, you can also call their main offices and ask to speak to their schedulers.
• Other Community calendar events. Many local newspapers have extensive listings of fairs, parades, concerts, and other community events where Members of Congress might show up.

Please feel free to utilize the following materials to help guide your LTSS advocacy:

• Fact sheet:
  http://www.ucp.org/uploads/Health_09June17.pdf
• Talking points:
  http://www.ucp.org/uploads/Talking_Points_09June17.pdf
• The Long Term Services and Supports Puzzle:
  http://www.ucp.org/uploads/LTSS_Puzzle_09June17.pdf
• Declaration of Independence Tool Kit, including Petition:
  http://www.ucp.org/uploads/Toolkit_09June17.pdf
• Personal stories from your community (such as being on a waiting list for home and community based services, having to quit a job to care for a loved one, having to take a second job to pay a care provider, not being able to move to another state due to loss of Medicaid services, etc).

For additional information and resources, visit www.PassTheCLASSAct.org.

If you have any questions, please feel free to contact Annie Acosta at 202-783-2229 or acosta@thedpc.org

Capitol Insider - Week of June 29, 2009

Read Capitol Insider for an overview of the week's most important public policy events.

Information & Referrall: National Deaf-Blind Awareness Week

As the result of a Presidential Proclamation in 1984, the week of June 27^th (Helen Keller's birthday) has been designated Helen Keller Deaf-Blind Awareness Week. Every year, the Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC) celebrates this anniversary with a national campaign highlighting a particular aspect of deaf-blindness. HKNC reports that more than a million people in the United States are estimated to be deaf-blind and those numbers are growing steadily.

This year's theme is "Deaf-Blindness Didn't Stop with Helen Keller." HKNC wants to challenge the assumption that Helen Keller is the only recognizable person who is deaf-blind. The intent of this special week is to show the diversity, accomplishments and potential of today’s deaf-blind community.

Posters, sample press releases, and listings of activities across the country can be found on the HKNC website.

Is your Affiliate prepared to provide services for people who are deaf-blind? Learn more and find local resources:

• American Association of the Deaf-Blind Resources Page
• FAQ’s about Deaf-Blindness
• National Consortium on Deaf-Blindness
• Deaf-Blind International

Annoucements - Week of June 24, 2009

Affiliate News

• UCP of Michigan: Actively recruiting students to participate in thinking speed study.


• UCP of West Alabama: Tuscaloosa News - Cerebral palsy group's first yard sale has wide selection.
• UCP of Central Maryland: Pets on Wheels Comes to the Sulphur Spring Center.
• UCP of Central Minnesota: 2009 Spirit Award Nominations (Due September 1^st).
• UCP of Mobile: Andalusia Star-News - All smiles for camp - Therapists taking cerebral palsy patient to Camp SMILE

Other News

• Disability Scoop: On Olmstead Anniversary, President 'Committed' To Progress.
• Disability Scoop: Supreme Court Rules On Private School Reimbursement.
• Disability Scoop: Housing Vouchers To Help People Stay Out Of Institutional Settings.
• JF Activist: Olmstead Anniversary Stirs Up Interest in Long Term Services and Supports
• Midlothian Exchange: Teen heads to national competition in California. Earlier this year, Shields was selected from more than 600 of the top-ranked blind and visually-impaired students from across the United States and Canada to compete in the 9th annual National Braille Challenge, an all-volunteer event in California sponsored by the Braille Institute of America.
• Pittsburgh Post-Gazette: UPMC center studies ways to allow the blind to 'see'.
• Pittsburgh Post-Gazette: Pittsburgh stands in world disability rights spotlight.
• Littleton Courier: Graduates urged to be true to themselves.
• Northwest Arkansas Times: 'War Eagle, Arkansas' film premieres at Malco
• Commonwealth Community Trust: Provider of trustee services for people who can benefit from having a Special Needs Trust or Pooled Disability Trust

Social Media and Web 2.0 News

• Harvard Business: Why Non-Profits Are So Good at Social Media.
• Make Money Myself Blog: The Fundraising Habits of Supremely Successful Boards: A 59-minute Guide to Ensuring Your Organization's Future (Book Review).
• The Agitator: Twitter - Not Just For Revolutions.
• Charity Chatter: Who Cares!?
• Donor Power Blog: Podcast - How a Sick Organization Got Better
• nfp 2.0: My Fundraising 2.0 presentation (A United Kingdom Perspective on Online Fundraising).
• Nonprofit Technology Network: Effective Fundraising with Facebook Causes
• Social Media for Nonprofits: Small Bites vs. Big Meals.
• Christine Sculati: Fundraising - It's all about relationships.
• IdealWare: Using Wikis for Internal Documentation.
• Beth's Blog - How Nonprofits Can Use Social Media: Youtube Video Volunteers Program Launches

Take Action

• Disability Policy Collaboration: Make the Most Out of the Independence Day Congressional Recess Help Get Long Term Services and Supports in Health Care Reform
• Disability Policy Collaboration: Help Keep the Community Choice Act (CCA) on the Table Ask Congress to include CCA elements in the health care reform bills
• Disability Policy Collaboration: Share Your Long Term Services and Supports (LTSS) Story

Serve.gov & AllForGood.org: Tools to Recruit Volunteers and Much More!

Two new resources are available to the United Cerebral Palsy affiliate network and those who support UCP in our local communities. Answering the call of President Obama, two new Web sites now make it easier than ever to volunteer and to advertise volunteering opportunities.

Serve.gov makes it easy for all Americans not only to find ways to serve in their communities, but also to create and promote their own service projects. On the Serve.gov Web site, you can find toolkits, share your story as well as register your service project opportunity; whether it be painting, building or perhaps something to do with online technology, such as the video below demonstrates when recruiting Video Volunteers to help tell your story and why your cause is important.

YouTube: Video Volunteers

In addition, Google recently launched a new Web site entitled All for Good, which helps match citizens with volunteer opportunities in their local communities. Inspired by the call of President Obama to engage more Americans in service, All for Good functions similar to Craigslist, but for community service. What makes this different is that "you don't just have to show up at your local soup kitchen or animal shelter to give back – volunteering in the 21^st century can be done entirely online."

YouTube: All for Good

YouTube: First Lady Michelle Obama
Calls On You To Serve

"America's new foundation will be built one community at a time. And that starts with you." says First Lady, Michelle Obama. Please visit Serve.gov and AllforGood.org today to learn more, register or find your next volunteer opportunity.

For more information, please contact Will Hull at (202) 973-7106.

UCP of East Central Florida Celebrates 40th Anniversary Through Ornament Contest

Artists from the East Central Florida region got creative and submitted their best work in hopes that their design would be chosen as the winner of the UCP of East Central Florida 40^th Anniversary Ornament Contest. Artists were asked to design an ornament to commemorate UCP of East Central Florida's 40^th Anniversary of providing services to people with disabilities in the East Central Florida region.

Finalist:
Marcos Avalle-Mendez
of Daytona Beach

Fifteen different designs submitted from local artists in the community and each of the design was marked anonymously for judging. Dan Gunderson, Professor of Art at Stetson University and nationally recognized artist judged the event. The finalists were selected by Gunderson and each were then asked to create a clay prototype of their design. Though the decision was a hard one to make, Gunderson selected the design of Marcos Avalle-Mendez of Daytona Beach. Avalle-Mendez is a skilled local artist and received his Bachelor of Fine Arts from State University of NY at Fredonia.

The 40^th Anniversary ornament will be produced at UCP of East Central Florida's Jimmy Ann Drive location in Daytona Beach, by individuals with disabilities. The ornament will be unveiled and available for purchase at UCP's 40^th Anniversary Celebration on October 22^nd at the Museum of Arts and Science in Daytona Beach.

UCP of East Central Florida is proudly celebrating 40 years of providing services to the region since 1969. The affiliate provides services in Volusia, Flagler, St Johns, Putnam, Lake and Marion counties and serves more than 600 individuals with both physical and developmental disabilities. UCP of East Central Florida has three main focuses which are to train people to work in the community, to help people secure work, and to help them live in the community.

For more information, visit the UCP of East Central Florida Web site or contact Maureen O'Connell at (386) 274-6474.

Capitol Insider - Week of June 22, 2009

Read Capitol Insider for an overview of the week's most important public policy events.

Deloitte Spends Day Volunteering at UCP of Central Ohio for 10th Annual IMPACT DAY

Twenty Deloitte volunteers decked out in bright blue t-shirts walked through the doors of UCP of Central Ohio on Friday, June 5, 2009, to donate their time and talents on Deloitte IMPACT Day. This day marks the fourth year for Deloitte's tradition of visiting UCP to provide critical work to build up the agency's facility and grounds. The group also made a large donation of several items on UCP of Central Ohio's wishlist.

In the morning, volunteers soaked up the sun while planting flowers and vegetables in "the green space." Other volunteers chose to show their creative side while painting wooden benches, transforming them into colorful benches to be auctioned off at the Westerville Music and Arts Festival in July. Additional volunteers transformed the men's restroom into a locker room with colorful sports memorabilia.

In the afternoon, volunteers got some quality time with UCP's participants, making Father's Day cards and gifts. Another group of volunteers helped the development department prepare for the upcoming golf outing by stuffing golfer goodie bags and agency brochures.

"Deloitte employees and volunteers understand the true meaning behind giving back & making a difference in their community. They set a great leadership example for the corporate community through their donation of time & resources to UCP [of Central Ohio] on Impact Day," said Kathy Streblo, UCP of Central Ohio, Executive Director.

Because most of UCP of Central Ohio participants live in a somewhat isolated environment, interaction with the community helps them to socialize. More important, it gives the participants a sense of purpose, knowing that the volunteers took time out of their extremely busy schedule to spend time with them.

The Deloitte staff made a lasting impact on the exterior and interior areas of the agency. Without the efforts from Deloitte volunteers, these types of building improvements would be limited. The staff and participants at UCP of Central Ohio would like to thank the Deloitte volunteers for giving their time and energy to help enhance the lives of people with disabilities and aging conditions in Central Ohio.

For more information, please visit the UCP of Central Ohio Web site or contact Gina Ginn at (614) 279-0109.

Guest Post from the Orlando Sentinel Newspaper : My Word: Early Aid Fans Sparks Into Flames

By UCP of Central Florida President and CEO, Ilene E. Wilkins
June 4, 2009
Special to the Orlando Sentinel

When expecting a baby, people typically are asked, "Do you want a boy or a girl?" Most answer, "I don't care, as long as the baby is healthy."

But one in 10 children have a disability, such as autism, Down syndrome or cerebral palsy, or a speech, vision or hearing impairment. To reach their potential, these children require special education or therapy, or both.

Our community was recently introduced to a talented 7-year-old with autism — Gina Marie Incandela. Gina is the Orlando Magic's good-luck charm. With her belting out the national anthem before all the playoff games, the Magic won each time, and now are Eastern Conference champions. And Gina will be there when the Magic win the NBA Finals against Los Angeles.

United Cerebral Palsy of Central Florida met Gina at age 2 — when she entered UCP's Osceola campus. At that time, Gina couldn't speak, make eye contact or tolerate public places. Her parents dreamed she'd talk one day.

For years at UCP, Gina worked hard in her daily educational, occupational and speech services. Then, our music-therapy program fanned a spark that became a flame. Little by little, Gina found her voice through singing, and she emerged as the victorious Gina you see today.

While most children won't become a singing star like Gina, her success highlights the importance of receiving early-intervention services at the youngest possible age. Many people don't realize that children with a delay or a disability can, and should, begin their education and therapies as early as 6 weeks old.

During the first three years of life, the window of opportunity for learning and brain growth is greater than at any other time in a child's life. UCP's early-intervention programs reach children during their formative years when education and health care provide the greatest effect, when it's still possible to reduce or even eliminate the effects of the children's conditions. Over the decades, we've watched thousands of children take their first steps, even after their parents were told they would never walk. We've heard children carry on conversations, though their families were given no hope they would ever speak.

Early intervention translates into big fiscal dividends for our community as well. For every dollar spent on high-quality, early intervention for children with special needs, up to $17 is saved in future costs.

Like other high-quality, early-intervention programs, UCP prepares the children to succeed and shapes the children's progress for the rest of their lives.

At UCP, our vision for the future is to reach every child like Gina, so each can accomplish his or her dreams, whether it's singing the national anthem in front of tens of thousands or saying four simple words: "I did it myself."

For more information about this article, please contact Ilene Wilkins at (407) 852-3303

Aloha in Iraq: UCP of Hawai'i Executive Director, Donna Fouts’ Heart-warming Visit with American Troops in Iraq

Have you ever wondered where someone from Hawai'i goes on vacation? We found out.

United Cerebral Palsy Association (UCPA) of Hawaii is connected with the Great Aloha Run in the islands and it was Great Aloha Run representatives that flew to Iraq in May 2009 to spread a little "Aloha" to U.S. troops.

The Great Aloha Run takes place each year during the President's day weekend and this year was its 25^th anniversary. UCPA Hawaii is one of the charity recipients of the funds generated from this event and it supports the UCPA Hawaii early intervention program.

Most years, the "Sounds of Freedom," an active military unit, participates in the eight mile run, in cadence. When the miliatry is not on active deployment, the event can host upwards of 5,000 troops and 2,500 when troops are actively deployed, such as during the current Iraq and Afghanistan conflicts. "The event has always had a great connection with the military. " says Donna Fouts, UCPA Hawaii Executive Director.

UCPA Hawaii Executive Director, Donna Fouts had the opportunity to function as the charity connection and "thank you arm" for the Great Aloha Run when visiting the troops in Iraq. The proceeds from the Great Aloha Run provide $250,000 to $300,000 each year for local Hawaiian charities and, said Fouts, "I thought of nothing more that I could do than to support our troops. I was deeply honored."

The idea for the trip came up casually, and took root quickly. Fouts recalls in discussing the idea, "what we need is some aloha spirit over in Iraq."

The trip, overall, took 14 days with two days of flying to get there and two days of flying to get back.

The group left in May 2009 consisting of a party of nine. Five entertainers and the rest, including Fouts, were made up of support staff. The group held performances, flying from base to base in either a C-130 Hercules cargo plane or a Blackhawk helicopter, enduring tempuratures upwards of 120 degrees fahrenheit, in dry heat; "everyone always had a bottle of water on hand." Local entertainers, Sonya Mendez, Nohalani Simpriano performed with three of their dancers, who are each Hawaii State beauty queen title-holders and also skilled Tahitian dancers. Everyone was on-call, 24/7, to sign autographs and spread the aloha spirit for the troops.

Recalling the trip, Fouts said,

"This was certainly different for all of us. Everywhere we went the landscape was brown, dirt and rocks. We wore flak jackets everywhere."

"The troops were so appreciative. The troops often would ask us why we would endure 48 hours of constant travel just to hold a one hour show. We never saw a negative person. Every troop shared the sentiment that 'this is the mission we have, we're proud to do it.' We never expected such positivity in the war zone."

"I am so appreciative for our freedom. Everyone should have to go to a country like that, because we often take our freedom for granted."

"The trip itself was so wonderful to spread the aloha spirit. I came away on such a buzz, that I would go back in a heartbeat and it was an experience that I won't soon forget."

"I'm in my 50's and these people are out there, 21-24 years-old and I know that there is nothing wrong with our youth after seeing what I saw. It was relatively safe and just after I left one base was attacked the day after our performance. One of the troops I spoke with told me, 'You need to know that we are making progress, wonderful things are happening. Please spread that along to the people you talk to when you get back to the States.'

Thanks to all of the troops serving around the world in every capacity. Thank you to the Great Aloha Run and Donna Fouts for sharing this wonderful story with the UCP community.

For more information, please visit the UCPA Hawaii Web site, view more photos on Flickr.com, or contact Donna Fouts at (800) 606-5654.

Annoucements - Week of June 17, 2009

Affiliate News

• UCP of Central Arizona: Giant Schnauzer blog "shameless plug for UCP of Central Arizona."
  
  
• UCP of Colorado: Mile High United Way blog - Redesigning the American Dream

Other News

• Disability Scoop: Scoop Essentials: Planning For The Long Haul (For more about Planning for the Long Haul, view the UCPeople article about MetDESK)
• Disability Scoop: Texas Adopts Safeguards For Institutions
• ABC News: Cerebral Palsy Can't Keep Pitcher Down (Video)
• JF Activist blog: Olmstead's Anniversary and Disability Civil Rights
• The Atlanta Journal-Constitution: Disabled workers hit hard by tough times

Social Media and Web 2.0 News

• All For Good: Track Volunteering Activities with AllForGood.org. Inspired by the call of President Obama to engage more Americans in service, a group of individuals from the technology, marketing and public sectors came together to build an open source application that allows you to find and share volunteer activities.
• Beth's Blog: How Nonprofits Can Use Social Media: What tools and keywords do you use for your organization's listening dashboard?
• The Cohcom Blog: 5 Ideas to Build, Sustain and Utilize Your Social Networking Communities for Nonprofits
• DaveFleet.com: 25 Questions To Make Your Social Media Workflow Work For You
• Learn Free Internet Marketing: Online Fundraising with Social Networking, Social Media, and Web 2.0 (Video).

Capitol Insider - Week of June 15, 2009

Read Capitol Insider for an overview of the week's most important public policy events.

Take the Tour of a Virtual UCP of Central Florida School Campus

UCP of Central Florida recently opened their brand new virtual East Orange/Bailes Campus Schoolhouse to coincide with a fundraising campaign to complete the final phase of the capital campaign for the Bailes Charter School campus. When complete, the Bailes campus will host more than 300 children with and without disabilities each year. You can view the UCP of Central Florida announcement of the their grand opening here.

The Bailes schools will physically open in July 2009 as a fully inclusive Charter School that will be focus on Arts and Technology. The facility will total more than 35,000 square feet of space.

The announcement of the school's virtual opening also included a personal e-mail message from UCP of Central Florida CEO, Ilene Wilkins on the social network, LinkedIn. Leveraging existing social networks will help bring those who are used to life online and more likely to be comfortable to your virtual cause than many traditional donors and this is an excellent example of utilizing a social network to produce fundraising results.

What makes this project so unique is how the affiliate is raising money for the Bailes campus. Each individual can purchase any virtual item to coincide with the physical item for the actual school. Items include virtual chairs, desks, books, paper, wall art and much more. Ilene Wilkins writes in her LinkedIn message, "We've developed a very cool new Virtual School - where you can wander around our new school - and donate monies for individual items." When a person purchases a virtual item it acts as a donation to the capital campaign The donor receives instant recognition when their name appears on the item they purchased and it represents a tangible item for the donor.

On the virtual tour page it says, "NO DONATION IS TOO SMALL!" We hope you can stop by and take a look at this interesting and exciting way to complete UCP of Central Florida's capital campaign for the East Orange/Bailes Campus Charter School and help children with disabilities live a life without limits. If you do intend to purchase a virtual item, you can give Ilene Wilkins credit she is "Campaigner #13."

For more information , including the real costs of any of the virtual items, or on larger items such as Naming Opportunities within the campus, contact Terri Chastain or Suzi Albrecht at (407) 852-3300.

Guest Post: Disability Advocate from Spain Interns with UCP National Office

Allow me to introduce myself... My name is Claudia Tecglen, I am 22 and I have cerebral Palsy.

As you can imagine, life when you have a CP is not easy but I think that any life isn't without its challenges. Don't you agree?

Oh I have overlooked a minor detail about my life. I am from Spain.

I was born in Madrid in the mid-80's. When I was born, my mother felt that something was wrong. I couldn't crawl. I couldn't stand on my own. I couldn't do anything by myself.

Twenty years ago, the Spanish system was very different. Few doctors had knowledge about cerebral palsy so, as you can imagine, it was very difficult to find a proper diagnosis.

I was two-years old when I was diagnosed with CP. Every doctor, up to that point, couldn't properly identify my disability, which frustrated my parents greatly.

Fortunately, my parents had the economic resources that we needed so I could begin many early intervention therapies. My therapy regimen included daily rehabilitation, aquatic-therapy and nearly 20 surgeries throughout my life.

When I was five, I enrolled to study in a Jewish School. It is worth noting that I am Catholic, but Spanish state schools grouped all children with disabilities together for Special education classes and I would have been a part of that classification, having CP. In my case, my parents chose not to enroll me in a Spanish state-run school and chose a private Jewish School instead where I could study in an inclusive setting.

I was lucky because the director of the Jewish School had two nieces who had cerebral palsy as well. I believe the director empathized with my disability and through this connection, I was admitted to the school.

When I was 12, I started High School. Fortunately, today we can study in a state-run school in an inclusive setting with other able-bodied students mixed in with children with disabilities.

During my teenage years, everything was very difficult. I had many of surgeries and I felt isolated. In addition, the other girls dressed in skirts and I could not because of my disability. But I had to accept my situation. I have CP and I am different, but I am just as equal as anyone else.

Yes, everything was hard, but I also had a few true friends who helped me along the way.

In fact, I am very lucky to have very supportive parents, friends who spent time with me and my doctors who fought for and continue fighting on my behalf with all their might, in order to ensure my life is without limits.

One of the most important moments in my life was when I received my Intrathecal Baclofen (ITB) pump therapy from Medtronic. This therapy changed my life and I became more independent as a result.

Because of the independence that I enjoy, I decided nearly two years ago, to start a project with the goal to create a Web site where people with disabilities, who speak Spanish, can find all the information that they need; a place for medical and community resources and a place to showcase all available therapies for people with disabilities. In Spain, even though the medical system is socialized, and run quite well, these resources aren't considered very important by its citizens and government. I hope to help shape the way people in Spain and those around the world think about disabilities and the importance people with disabilities bring to society.

When the proper information is at hand, a person with disabilities or their care givers can make the right decisions and choose the future that fits them...changing lives.

We live in an age of technology and geographic boundaries do not exist. We can and must use these tools to help improve the future for people with disabilities.

This summer, through my therapy experience and the help of the Medtronic Foundation, I have accepted an internship with UCP at the national office. I have achieved one of my dreams.

Working with UCP, I hope to learn as much as possible and to apply the best of both worlds, the American system and the Spanish system, to the association that I have already founded, Convives con Espasticidad, "Living with Spasticity." If we work together, in a very near future, around the world, it will be possible to live a life without limits, without borders.

I am lucky but I hope that my case becomes no longer an exception to the norm. All people with disabilities should have every opportunity that they dream of.

P.S. I wish to thank my doctors, parents, brothers, friends, all of the Spanish Associations that I belong to, and most of all, the people who believe in the project "Living with Spasticity," since the beginning. And of course, I wish to thank UCP and the Medtronic Foundation for their support. Without their help, this project would not be possible.

For more information about Claudia Tecglen, please contact Will Hull at (202) 973-7106.

Information & Referral: Ask Lara About Fire Safety

Q. My workplace has a fire safety plan but what happens if someone with a disability needs to evacuate? What steps can I take to make sure our facility is safe for people with disabilities in the event of fire or other emergency?

A. There are many barriers to fire safety for people with disabilities. Decreased mobility, health, sight, and hearing may limit a person’s ability to take the quick action necessary to escape during a fire emergency. Depending on physical limitations, many of the actions an individual can take to protect themselves from the dangers of fire may require help from a caretaker, neighbor, or outside source.

The National Fire Protection Association (NFPA) has created several publications for both organizations and consumers on fire safety. Is your facility prepared to handle the needs of people with disabilities in case of fire? The materials below can help!

• NFPA Page on People with Disabilities
• Emergency Evacuation Planning Guide and Consumer Planning Checklist
• Safety in the Workplace, this guide is also available en Español.

Additional Resources

• Accessible Smoke Alarms and Evacuation Supplies
• Fire Safety for Wheelchair Users at Work and Home
• DisabilityPreparedness.gov
• US Fire Administration Page on Safety for People with Disabilities

Annoucements - Week of June 10, 2009

Affiliate News

• UCP Naqtional: CDW Joins Purchase Point (for affiliates only)
• UCP of Mobile: 4^th of July Butts & Rib-B-Q.
• UCP of Central Minnesota: Check out pictures from the hot and spicy event, Heat Wave 09.
• UCP of East Central Florida: "Life Without Limits" tours, to educate the local community about to programs and services of UCP of East Central Florida.
• UCP of East Central Florida: New video, "Imagine".
• UCP of San Diego County: No Limits Walk celebrating 26 years of unity and community support (October 24, 2009).

Conferences and Training

• Beth's Blog: How Nonprofits Can Use Social Media: Craigslist Foundation Boot Camp 2009: Don't Miss It! (June 20,2009, Berkeley, CA)
• 2009 Bridge Conference, integrating online and offline communications (July 21^st-23^rd, Washington, DC)

Contests and Opportunities

• Campaign for Disability Employment: The What Can YOU Do? Video Contest (Deadline to apply is July 15, 2009). The Campaign for Disability Employment seeks to promote positive employment outcomes for people with disabilities by encouraging employers, and others, to recognize the value and talent that people with disabilities bring to the workplace, as well as the dividend to be realized by fully including people with disabilities at work.

Reports

• The Institute for Community Inclusion (ICI)at Universtity of Massachusettes (UMass) in Boston and City University London: US and UK Routes to Employment: Strategies to Improve Integrated Service Delivery to People with Disabilities. Governments in both the US and the UK have been taking policy measures over the last decade to improve Public Employment Services (PES) so that they are more effective in assisting people, including those with disabilities, to move off benefits and into work. Implementing a One-Stop shopping approach into PES delivery is a challenging endeavor evidenced by both the US and UK experiences. The aim of this report has been to identify strategies that PES activities in both countries have used in the delivery of services to meet the more complex employment support needs of people with disabilities within systems designed for the "universal" job seeker.

Other News

• New York Times: Downturn Puts a Chokehold on Those Caring for Family Members
• Associated Press: Calif. contemplating rewrite of social contract
• LA Times: 'Empathy' on 1927 Supreme Court might have saved thousands from the knife


• JF Activist Blog: Call For CCA and CLASS Act Strong at NCIL Rally. Capitol Hill was abuzz on Monday, June 8^th, as people with disabilities from all 50 states and 10 territories converged to demand inclusion in Health Care Reform.


• JF Activist Blog: The "Woodwork" Myth
• Disability Scoop: Video Contest To Promote Employment For People With Disabilities
• Disability Scoop: Scoop Essentials: Disclosing Disability, Tackling A Dicey Proposition
• SmartBlog on Social Media: Andy's Answers - How to engage influential talkers
• Donor Power Blog: Brag about your donors, not about yourself
• Nonprofit Technology Network: Open Source Donor Management Systems: Know Your Options
• Nonprofit Technology Network: They're Finally Here! Video of the 2009 Nonprofit Technology Conference Plenaries or get session materials here.
• TechSoup.org: Increase Your Design Capacity with Products from Adobe (dontated products and discounts available to nonprofits)

Take Action

• Urge Your Members of Congress to Include Long Term Services and Supports in Health Care Reform

A ‘Day of Caring’ for UCP of Eastern Connecticut

A "Day of Caring" was held at the UCP of Eastern Connecticut Day Program in Quaker Hill, CT on May 26^th. Congressman Joe Courtney and his staff volunteered to assist UCP of Eastern Connecticut staff members with projects that were long overdue and in much need of attention.

The "Day of Caring" initiative, administered by the local community United Way, is designed to foster collaboration with the Eastern Connecticut business community in order to facilitate private industry volunteer activity for local nonprofit human service agencies.

Projects completed for the affiiate involved hanging a mural in the community room used by UCP of Eastern Connecticut Day Program participants, refinishing dining tables and some light landscaping. Everyone had a good time working together while getting to know one another.

UCP of Eastern Connecticut staff would like to thank all volunteers and contributors, and the United Way of Southeastern Connecticut for including UCP of Eastern Connecticut in their "Day of Caring" Plans.

For more information, please visit the UCP of Eastern Connecticut Web site or contact Peggy Morrison at (860) 443-3800.

Spring Means Golf at UCP of Suffolk

Although it rained on May 4^th, the originally scheduled date of the 20^th Annual UCP of Suffolk Golf Classic, rescheduling the outing to June 1^st did nothing to dampen the enthusiastic spirit of the UCP supporters who came to the Glenn Head Country Club to enjoy the day of great golf, fine food and camaraderie. $145,000 was raised to benefit UCP of Suffolk programs and services.

This year UCP of Suffolk was proud to honor Tony Bertrami, of Forest Hills Financial group and recognized Bill Misita and Philadelphia Insurance. Zurich, a global financial services firm returned as the presenting sponsor, with additional major support from E. W. Howell. For the 7^th consecutive year, Greg Schaefer of The Schaefer Agency, Inc., chaired the stellar event, with the assistance of honorary co-chairs Richard B. Lewis of R.B. Lewis Associates, Inc. and Richard Richiski of Zurich.

All of the usual Glen Head Country Club and UCP of Suffolk amenities were on hand, including a pristine course, fun contests and outstanding prizes. Most especially, the day offered the opportunity to partner with UCP of Suffolk in creating Life Without Limits for people with disabilities.

For more information about this event, please visit the UCP of Suffolk Web site or contact Christine Restani at (631) 232-0011.

Capitol Insider - Week of June 8, 2009

Read Capitol Insider for an overview of the week's most important public policy events.

UCP of Greater Sacramento Honors Respected Member of the Medical Community

UCP of Greater Sacramento honored Dr. Claire Pomeroy as the UCP 2009 Humanitarian of the Year at an awards dinner on May 14^th at the Hyatt Regency in Sacramento. Pomeroy is vice chancellor of human health sciences at University of California (UC) Davis and dean of the UC Davis School of Medicine. The award is given to individuals who have displayed a passion for life and a sincere desire to work toward enhancing the lives of others.

Over 400 people attended the 16^th annual UCP Humanitarian of the Year Award Dinner, which has raised more than $1.5 million for children and adults living with disabilities and their families throughout its 16 year history. This year's event raised over $145,000.

"Dr. Pomeroy has a profound impact on improving the reach and quality of health care in the Sacramento area," said Doug Bergman, UCP president and CEO. "This is a fantastic step in continuing our long tradition of honoring Sacramento's finest leaders."

Pomeroy oversees the UC Davis Health System and all of its academic, research and clinical programs, including the new Betty Irene Moore School of Nursing, the School of Medicine, the Medical Center and an 800-member physician practice group. She is responsible for 8,000 employees and a one-billion dollar budget. She is an expert in infectious diseases and a professor of internal medicine and microbiology and immunology.

Pomeroy is committed to a new vision for health care and health—one that focuses on broad social determinants of health and that calls for new approaches to building a healthy world. She has championed new technologies such as telemedicine for improving access and quality of patient care, as well as new educational approaches such as inter-professional learning and community-based research.

As a member of the commission that governs the California Institute for Regenerative Medicine, Pomeroy also supports stem-cell research. She is known for her leadership in improving health care in Sacramento, has inspired many to pursue a career in the medical sciences and is an advocate for people with special needs.

UC Davis Health System includes a top-ranked school of medicine, a 613-bed acute care hospital, the Betty Irene Moore School of Nursing, a National Cancer Institute-designated cancer center, the unique M.I.N.D. Institute for the study of neuro-developmental disorders, a comprehensive children's hospital, a level 1 trauma center and outpatient clinics in communities throughout the Sacramento region. UC Davis offers nationally regarded medical and scientific expertise and is considered a leader in areas ranging from telehealth and vascular medicine to trauma care. It is also a longtime leader and advocate for improving health in the state's rural communities, where residents often lack access to specialty care."

To view pictures from the event, please visit the Katchin Ya Kandid Web page on Smugmug.com. All images © Monica Toohey-Krause.

For more information, please visit the UCP of Greater Sacramento Web site or contact Steve Horton at (916) 565-7700.

A Challenge for Houston

Matthew is your typical 5^th grader. He plays basketball, reads adventure novels, plays video games and is challenging the citizens of Houston to create lives without limits for people with all types of disabilities. Ok, so maybe he's not so typical. At age 9, with the help of his friends and family, Matthew was able to raise almost $3,000 for UCP of Greater Houston's High School High Tech Program which helps high school kids with disabilities graduate, get internships, and go to college – his personal goal is to attend The University of Texas at Austin upon graduating from high school.

Since his first campaign, Matthew has begun participating in UCP of Greater Houston's yoga program as well as attending Camp Smiles, a week-long overnight camp where he is able to go fishing, climb rock walls and learn photography. "He is counting the days until he can go to camp again," Matthew's mother, Suzy, explains. "Matthew would love to raise enough money to send all kids with disabilities to Camp Smiles. After all, that is what childhood is all about."

Now, at age 11 Matthew is trying to do just that. He has decided to not only challenge his friends and family but the Houston community as a whole. He hopes to raise $30,000 for people with all types of disabilities. Matthew chose to support UCP as they are the only organization in the Greater Houston area providing comprehensive services to individuals of all ages with any type of disability and their families, over 65% of whom are below the poverty level.

"Like all charities, this economy pushes us to do more work for more clients with fewer resources," explains CEO, Elise Hough. "We are the safety net supporting our most vulnerable neighbors. Matthew is an extraordinary young man who challenges us all to remember that we are part of a community that takes care of its own. I am so grateful for his example and leadership and am confident that Houstonians will be inspired to give their time, talents and resources-they are needed now, more than ever."

Matthew kicked off his campaign at the 10^th Annual Hats Off to Mothers Luncheon on March 26^th. He also spoke to his peers at his elementary school last month to explain the needs of kids with disabilities, like himself, and asked them to help him in his challenge. The reaction was incredible. Many of his peers brought encouraging notes with their allowance enclosed.

Thanks to the help of many inspirational children and adults, Matthew has raised over $14,000—almost halfway to his goal! He will be continuing his campaign through the end of the school year and into the summer. Donations can be made on the UCP of Greater Houston Web site, by mail or by phone at (713) 838-9050. Also, check out more information on Matthew's Challenge by visiting the UCP of Greater Houston on Facebook Group, profile page or Cause.

For more information, please visit the UCP of Greater Houston Web site or contact Sarah Ardis at 713-838-9050 ext. 351.

Information & Referral: Summer Time and the Water is Fine

Summer is fast approaching and your local swimming hole (or pool) is a fun way to cool down for people of all abilities.

Newly designed or newly constructed and altered swimming pools, wading pools, aquatic recreation facilities, and spas must meet ADA regulations. There are also many products that make swimming and pools more accessible for people with disabilities — even pool wheelchairs. ABLEDATA provides a list of water related assistive technology devices that can help people with disabilities enjoy water activities.

Water is also a source of therapy and rehabilitation for people with disabilities. Aquatic therapy activities can be done in either indoor or outdoor pool facilities and consist of cardiovascular endurance and conditioning exercises. These include walking, jogging, jumping, swimming, kicking, and other continuous rhythmic activities that elevate metabolism and improve cardiovascular function. Read the Aquatic Therapy Factsheet for more information.

Additional Resources

• Aquatic Therapy and Rehab Institute
• Aquatic Exercise Association
• Accessible Swimming Pools and Spas from the Access Board
• Making a Splash: Inclusion of People with Disabilities in Aquatic Venues
• Providing Access to Beaches

Annoucements - Week of June 3, 2009

Affiliate News

• UCP of Central Maryland: UCP Delrey School's Mayfair a Success.
• Cantonville Times: Delrey School starts speaker series on special needs topics.
• UCP of of Northeastern Pennsylvania: Kick Off, Capital Campaign for New Children's Center.
• UCP of Eastern Connecticut: Memorial Golf Tournament (Review).

Reports and Events

• U.S. Department of Labor (DOL) Office of Disability Employment Policy (ODEP): Creating a Roadmap out of Poverty for Americans with Disabilities: A Report on the Relationship of the Employment and Training Administration's Workforce Development System and Local Asset-Building Coalitions (PDF, MS Word).
• National Center for Learning Disabilities: Roadmap to Pre-K Response to Intervention (RTI): Applying Response to Intervention in Preschool Settings.
• Association on Higher Education And Disability (AHEAD): 2009 Global Access: Opening a World of Opportunity (the 32^nd annual conference of AHEAD, July 20 - 25, 2009, Louisville, KY).
• Social Security Administration (SSA): Ticket to Work Event Schedule


• Southwest Conference on Disability (September 30-October 2, 2009, Albequerque, NM).

Web Based Training

• WorkSupport.com: Customized Employment Training Course. This course will take a closer look at customized employment and how it can facilitate employment outcomes for individuals with disabilities. It will also review strategies for collaboration and braiding funding to support the needs of an individual with a disability in order to be successfully employed in the community ($60/individual, June 15 - July 13, 2009).

Other News

• The Urban Institute: The Recession and Nonprofits: Impacts, Responses and Options.
• Washington Post: A Letter from U.S. secretary of health and human services: Taking Care of Our Caregivers


• Disability Scoop: Job Cuts To Disproportionately Affect People With Disabilities.
• Disability Scoop: White House 'Very Concerned' About Seclusion, Restraint.
• OnMilwaukee.com: Reality TV star to guest speak at power lunch
• New York Times: Supreme Court to Address Meeting the Needs of Special-Education Students
• Wall Street Journal: The Road To Success Is Paved With Blogs - And Tweets
• Beth's Blog - How Nonprofits Can Use Social Media: 8 Nonprofit CEOs Who Tweet
• Donor Power Blog: How social media is changing nonprofits

Take Action

• Urge Your Members of Congress to Include Long Term Services and Supports in Health Care Reform.

Capitol Insider - Week of June 1, 2009

Read Capitol Insider for an overview of the week's most important public policy events.