Friday, July 31, 2009

UCP of Central Ohio Hosts
10 High School Students with Disabilities
For a Week at U Can Play (U.C.P.) Camp

Whether spending the day on a golf course playing adaptive golf, or taking a tour of The Ohio State University Schottenstein Center, 10 high school students with disabilities enjoyed a fun-filled week at U Can Play (U.C.P.) Camp July 20-24, 2009. The purpose of the day-camp was to give the students an opportunity to learn about ways to integrate physical fitness and healthy choices into their lives. The activities also helped the campers to master a new skill and explore their creativity through arts and crafts. The students were referred to the camp through the Franklin County Board of MR/DD.

The camp atmosphere offered an opportunity for the students to participate in extracurricular, educational, and personal development activities. Each day's activities were centered on a fitness and recreation theme.

Camp began on Monday with an activity for the campers to design a camp logo that would be screen-printed onto a t-shirt. The campers also began working on a scrapbook to have as a camp keepsake. Each camper was given a disposable camera to capture the week's activities.

On Tuesday, the campers spent the day at The Landings Golf Course. Each camper learned how to properly swing a golf club and had a chance to practice hitting some balls on the driving range.

On Wednesday the campers began the day with some stretching exercises, followed by a yoga class. Next the campers toured UCP's fitness room to learn how to use the exercise equipment. Students from The Ohio State University joined the campers for a nutrition presentation followed by a demonstration on making a healthy lunch. To burn off those calories from lunch, the campers took part in an adaptive dance class in the afternoon. Motivational speaker Katie Allen also stopped by to talk to the campers about her experiences with cerebral palsy and how it motivates her while running track.

The campers spent Thursday morning touring the Schottenstein Center. Their behind-the-scenes tour included a look at the locker rooms and an up-close look at the basketball court. The week wrapped up with Health & Nutrition Jeopardy, a carnival, and an ice cream social.

U.C.P. Camp not only provided an opportunity for students with disabilities to try new experiences, but also encouraged self exploration and an active lifestyle. UCP plans to host the camp again next summer!

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

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Wednesday, July 29, 2009

President Obama Annouced Intention
to Sign UN Convention on
the Rights of Persons with Disabilities

Last Friday, July 24th, President Obama announced his intention to sign the UN Convention on the Rights of Persons with Disabilities to coincide with the 19th Anniversary of the signing of the Americans with Disabilities Act (ADA) on July 26th. He instructed Ambassador Susan Rice to sign the United Nations document in New York this week.

"Disability rights aren't just civil rights to be enforced here at home; they're universal rights to be recognized and promoted around the world,” said President Obama. "That's why I'm proud to announce that next week, the United States of America will join 140 other nations in signing the United Nations Convention on the Rights of Persons with Disabilities — the first new human rights convention of the 21st century."

The President made this announcement in the East Room of the White House while he was with legislators who were involved with the passage of the ADA in 1990 and others who have advocated for the disability community following the law's passage . In the audience were disability advocates from across the country and from across the disability spectrum.

Other coverage of this event:

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Information & Referral:
Ask Lara About Government Benefits

Q. What benefits are available to people with disabilities? Where do I refer people who want to find out if they are eligible for Government Benefits?

A: The new website, GovBenefits.gov is the official website of the US Government with information on over 1,000 benefit programs. Users can search an A-Z list of specific topics such as "Disability Assistance" and "Healthcare." The site's core function is the eligibility pre-screening questionnaire. Answers to the questionnaire are used to evaluate a visitor's situation and compare it with program criteria to determine potential eligibility for benefit and assistance programs. The site also provides information and links to State benefit programs.

My Child Without Limits has a new section on Benefits so be sure to check that out!

Do you get a lot of questions about State or Federal benefits? Does your Affiliate assist people with applying for benefits?

Have a question about Information and Referral services? Ask Lara! Please contact Lara by e-mail or reach her by phone at (202) 776-0406 x7105.

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Annoucements - Week of July 29, 2009

Affiliate News

Webinars

Research/Study

  • California State University Dominguez Hills (CSUDH) Occupational Therapy program: Recruiting participants for a quantitative research study entitled Comparison of sibling perceptions of being raised with a brother or sister with non-ambulatory or ambulatory cerebral palsy. This research aims to increase awareness of the unique needs of siblings with a brother or sister with cerebral palsy. They are recruiting participants who are:
    • 18 years or older;
    • Have a sibling with cerebral palsy; and
    • Lived with your sibling with cerebral palsy for at least 5 years.
    If you know of anyone who fits this description please pass along the survey link: http://www.csudh.edu/actech/otsurveyintent.htm

Other News

Social Networking and Web 2.0

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Monday, July 27, 2009

The Chef Jeff Project
Awards Aspiring Chef with Cerebral Palsy

Last fall, The Chef Jeff Project Scholarship Contest invited students from all over the country to submit an essay responding to the question, "How would a culinary degree from The International Culinary Schools at The Art Institutes help you build a better future?" The winner received a $20,000 tuition scholarship towards a culinary arts degree at one of The International Culinary Schools at The Art Institutes. The essay contest was offered in conjunction with the Food Network show, The Chef Jeff Project, hosted by Chef Jeff Henderson. Essays were judged on three key points – the ability to clearly communicate a specific culinary career goal and vision, the originality of the story, and the degree of passion and conviction for pursuing a culinary arts education. More than 13,000 essays were submitted.

The winner, chosen by Chef Jeff Henderson himself, was Mical Tachel Terry of Jonesboro, Georgia. Mical has a passion for culinary arts that began when she was a small child watching her mother cook for her family. But she had some serious challenges along the road to culinary school. Diagnosed with cerebral palsy at 14 months, Mical had five surgeries and years of exercises and physical therapy to be able to walk unaided. She says, "Getting a degree in culinary arts will give me a sense of pride and completion, knowing all the struggles my family went through were not in vain, knowing dreams can come true despite my cerebral palsy. The goal I have after completing my culinary arts degree is to go on to open an upscale bakery and restaurant with my mother, my biggest supporter." Starting classes towards the bachelor of science degree in culinary arts management at The International Culinary School at The Art Institute of Atlanta in January was the beginning of realizing that dream.

The International Culinary Schools at The Art Institutes is North America's largest system of culinary programs with over 30 locations. The Art Institute of Atlanta is a part of a system of over 40 educational institutions throughout North America, providing an important source of design, media arts, fashion, and culinary arts professionals.

Now in her third quarter, Mical's vision includes giving back to others as well as becoming a successful restaurateur. She explains, "One of the other dreams I have is to start an after-school program for kids. The program will create an understanding that there is more to life than getting in trouble. Most of the time kids get into trouble due to boredom and lack of attention from someone in their lives. My program will give kids something productive to do as well as inspire future chefs."

In selecting Mical as the winner of the contest, Chef Henderson said, "I chose Mical Terry because of her will to beat the odds, despite her medical setbacks. It was her mission in life to never give up and pursue a dream to one day earn a culinary degree and open a restaurant. So I've selected Mical as the top candidate for The Chef Jeff Project Scholarship."

For more information, visit The Art Institutes International Culinary Schools Web site or contact Elizabeth Wilson at (770) 689-4832 or Kim Resnik at (770) 689-4892.

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Capitol Insider - Week of July 27, 2009

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

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Friday, July 24, 2009

UCP Listed Among
Top 100 Nonprofit Power Brands
A Report by Cone and Intangible Business

United Cerebral Palsy was recently named among the top 100 Nonprofit Power Brands by Cone, an organization that works with "clients to invent new categories and elevate the power and meaning of brands in completely new ways" working in "Brand Marketing, Cause Branding, Corporate Responsibility, Crisis Prevention and Management" declares the Cone Web site. This report is "the first public ranking in the United States to value nonprofit organizations by more than financial standing alone." Cone, in collaboration with Intangible Business to write the report, developed the new brand valuation to provide nonprofits with the information and inspiration they need to make their brands work harder.

The methodology of the report is rigorous. It describes a selection of the nation's largest nonprofits as determined by organizations such as Forbes, The Nonprofit Times, and The Chronicle of Philanthropy. Next, Cone reviewed the organizations' "brand image, 2007 revenue and propensity for future growth" determined from a "nationally representative survey [Cone had] conducted among 1,000 U.S. adults to measure consumer perception." Other variables included coverage in national media, geographic reach, volunteer support base, percent of revenue from direct public support, efficiency percentage and growth score among others. The report states, that Cone hopes to "provide a deeper understanding of the other components that affect the success of the nation's leading nonprofits."

"Through this valuation, we want to help nonprofits better understand how to protect and evolve their brands to generate as much revenue as possible," says Alison DaSilva, executive vice president of Knowledge Leadership and Insights, Cone. "Valuing their brands gives them a license to demonstrate to companies and other partners that there is an established and justified cost to aligning with their organization."

Please visit the Cone Web site today and download this report.

For more information, please visit the Cone Web site or contact Andrea List at (617) 939-8418.

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Wednesday, July 22, 2009

Information & Referal:
National Youth Sports Week

July 20-24 is National Youth Sports Week!

The House of Representatives designated the fourth week of July as National Youth Sports Week as a reminder that youth sports are about much more than fitness—they are about building character through fun, communication, sportsmanship, and teamwork. Research indicates that sports participation can promote healthy mental and physical development and contribute to the development of social competence and self-esteem—traits that are important for all children but especially so for youth with disabilities.

According to the CDC, when it comes to children and adolescents with disabilities it is important for parents and professionals to work with the child's health care provider to identify the types and amounts of physical activity appropriate for them. When possible, these children should meet the guidelines for children and adolescents—or as much activity as their condition allows. All children and adolescents should avoid being inactive.

There are dozens of ways that youth with disabilities can enjoy sports and fitness activities. The following resources provide more information

Does your Affiliate or organization provide sports or recreational programs for youth with disabilities? If so, let me know by contacting Lara Terrell at (202) 776-0406 or posting a comment below!

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Steppin’ It Up For People With Disabilities

Martin Sheedy has Arthrogryposis and heads the Project Scissor Gait Foundation that educates, promotes, and provides research opportunities about Scissor Gait, Prune Belly Syndrome & Arthrogryposis to help everyone live more meaningful and productive lives. The mission of the Scissor Gait Foundation is similar to the mission of United Cerebral Palsy, to advance the independence, productivity and full citizenship of people with disabilities. Marty is 21 years-old and from Dearborn, Michigan. He is an exceptional character and has an uplifting spirit that affects everyone around him.

Having two dislocated hips as part of Arthrogryposis Multiplex Congenita, Marty had difficulty walking normally growing up. His doctors insisted that he walk the "right way." However, by crossing his legs over each other and shifting his weight in this position he was able to keep his balance with less difficulty and therefore he was able to walk farther and longer. Today he continues to walk as he has when he was a child and doesn't let this fact stop him from living a life without limits.

Sheedy is also an active member of his community. He currently serves on the Dearborn Commission on Disability Concerns as Chairperson of the Communications Committee and is actively involved in the local Masonic and Shriners among many other organizations in his community. He also travels and gives motivational speeches regularly.

Well, enough of us speaking about Martin, why don't we let him talk about himself for a bit. He truly is an inspirational individual living a life without limits.

For more information, please visit the Scissor Gait Foundation Web site or contact Martin Sheedy at (313) 254-0941.

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Save the Date: 2010 UCP Annual Conference

SAVE THE DATE
United Cerebral Palsy Annual Conference
May 20 – 22, 2010
The Westin Michigan Avenue
Chicago, Illinois

Join us for one of our most exciting and informative annual conferences in the vibrant city that is second to none, Chicago. Planned conference programs will include focused sessions on development and fundraising, exhibits showcasing the latest products and services available for people with disabilities, our annual awards dinner and many social and networking events. Mark your calendars now and plan to attend our exciting and important 2010 Conference.

Additional information will be available and online registration will be activated soon at www.UCP.org.

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Annoucements - Week of July 22, 2009

Affiliate News

Grants and Other Opportunities

Webinars

Contests

Other News

Fundraising

Social Networking/Web 2.0

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Monday, July 20, 2009

Milwaukee Brewers Give Their
‘Jerseys Off Their Backs’
for UCP of Southeastern Wisconsin

Recently, on Saturday, July 11th, the Brewers' Players' Wives hosted a special event, Jerseys Off Their Backs, to benefit United Cerebral Palsy of Southeastern Wisconsin. Lucky winners went on the field immediately after the game and were presented with an autographed jersey, straight off the back of a player on the 25-man roster. Brewers Players' Wives' walked through the stands and staffed tables throughout the ballpark to sell tickets through the 4th inning for a small donation of just $1. Proceeds went to Brewers Charities, Inc. in support of United Cerebral Palsy of Southeastern Wisconsin.

Casey McGehee, Milwaukee Brewers team member, is the father of two-year-old son, Mack. Together with his wife Sarah, they found out that Mack has cerebral palsy through an early diagnosis. Currently a rookie in the major leagues, McGehee is bringing awareness to cerebral palsy and a cause the team and the Players' Wives' can believe in.

Casey admits, "It took me quite a while to come to terms with it," reports Milwaukee's TMJ4 local NBC affiliate.

Also, Sarah finds it difficult when her husband is on the road at away games. "It's like groundhog day. Every day seems like we do the same thing every day when he's gone," she said.

Mack was present for McGehee's first major league home run and on July 29th he will get the opportunity to throw out the first pitch; the same day, the Brewers Players' Wives' will present United Cerebral Palsy of Southeastern Wisconsin a check for $50,000 as a result of the proceeds collected from the raffle held on July 11th.

To view the TMJ4 story, visit their Web site and view the accompanying video.

For more information, visit the UCP of Southeastern Wisconsin Web site or contact Fred Hesselbein at (414) 329-4500.

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Capitol Insider - Week of July 20, 2009

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

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Friday, July 17, 2009

UCP of Philadelphia & Vicinity Celebrates
Sixth Annual Automobile Event & Raises Over $200,000

UCP of Philadelphia & Vicinity recently held their sixth annual UBS Motor Cars Under the Stars Event in early June 2009 and the event raised over $200,000 for the affiliate. It was a spectacular evening presented by UBS Financial Services at the Simeone Foundation Museum, where over 400 guests strolled the expansive museum and enjoyed its world-class display of 65 racing sports cars from the late 1940s through the 1960s from the private collection of Dr. Fred Simeone. A special collection of performance cars from the golden era of racing was also curated just for this event.

Guests enjoyed cocktails and dinner, a performance by talented young singer Timmy Kelly, and received a collector's poster from Philadelphia-based and world-renowned automobile photographer Michael Furman that featured a 1956 Jaguar D type racing car

Modern day classics from Jaguar and Land Rover were also on display, courtesy of Automotive Sponsors The Great Britains and Land Rover Jaguar Main Line.

The event was founded in 2003 by Ken Catanella of UBS Financial Services Inc. and was chaired by Frank A. Roccisano of UBS Financial Services Inc. and Michael Smyth of The Great Britains and Jaguar Land Rover Main Line. Dick Vermeil served as Honorary Event Chair, John Colabelli as Journal Chair and Dasha Yermakova as Young Friends' Chair.

Local CBS Network anchors Susan Barnett, Chris May, and Traffic Reporter Bob Kelly were the evening's emcees and Maddy and Harvey Rovinsky, owners of Bernie Robbins Fine Jewelers were the event honorees.

Philadelphia Magazine and the Philadelphia Inquirer were Media Partners, Bacardi U.S.A., Inc. and Brown-Forman were the beverage sponsors and Origlio was the beer sponsor.

For more information and to view photos from the event, please visit the UCP of Philadelphia & Vicinity Web site or contact Shawn Elise Tierney at (215) 242-4200 x223.

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Wednesday, July 15, 2009

Information & Referal: Ask Lara
About Finding Local Resources

Q: Sometimes the people we serve need health and/or social services that we do not provide. How do I find these services in my community?

A: The National Library of Medicine has created "Go Local", an online tool to find services across the country. About half of the States have comprehensive listings that include listings for health care providers and facilities and services for health and social issues from A to Z. The rest have basic listings such as finding health care providers and Medicare providers and services.

The Bravekids organization also provides an on-line directory that can help you locate organizations in your community.

We are also in the process of building a Resource Locator on the My Child Without Limits Web site. The database currently contains UCP Affiliates, Early Intervention services, National nonprofit organizations, and Government organizations. However, in the future it will also contain other National and local organizations that provide information and services to families of young children with disabilities.

The Maternal and Child Health Library provides an Online Directory for Finding Community Services for Children and Families.

Also, please refer back to Information & Referral 101 for more ideas on the types of services you should have referrals for at your finger tips!

How do you find referral resources in your community? Have you ever been stumped, not knowing where to send someone? Let me know by posting a comment below!

Have a question about Information and Referral services? Ask Lara! Please contact Lara by e-mail or reach her by phone at (202) 776-0406 x7105.

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Annoucements - Week of July 15, 2009

Affiliate News

Other News

Forums

Social Networking and Web 2.0

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Tuesday, July 14, 2009

Guest Post: Empowering People Breeds
Love for Self-Advocacy and Changes Lives

By Erin Breedlove

As many individuals with disabilities find, it is often difficult to discover a niche in modern society that labels people as if they are soup cans or some such material.

I'm Erin, a college student with cerebral palsy. Though my CP is mild, I feel the social effects of it almost daily. Everything from the stares by inconsiderate people in the aisle of the grocery store to the frustration being unable to drive at nineteen years old gets to me. However, it's always easier to focus on the negative when I'm angry over an issue that can't be controlled as a result of societal realities or personal circumstance. I know, though, that I am blessed. I have walked since I was five-and-a-half years old, and despite the doctors informing my parents that I would never learn to walk, talk, read, write, or drive, I could spell my name by the age of two-and-a-half. I also was reading on a first grade level by the age of four.

I live life with the mindset that I have to defy the so-called "standards" set by this expectations and lack of empathy of a modern society for individuals with extra challenges. So it takes me ten minutes to put both of my shoes on, my orthotics, and my socks. Are you going to tell me you're sick of waiting on me to do something independently? I think not!

Throughout my life, there have been many special angels who have spent countless hours dedicated to encouraging, helping, and supporting me. All the while they have shown me what it means to care for, and to advocate for, individuals with disabilities. I have turned the demonstration into passion and into my life's work and have advocated on behalf of and worked with children and young adults affected by disability for six years. I am attending Georgia College and State University (GCSU) to pursue a Bachelors degree in Special Education.

While attending GCSU, I will serve as the Vice President of Programming for the ABLE Student Alliance, which is an organization for disability advocacy on campus. In this position, I will be responsible for organizing awareness activities for the campus community, disability awareness promotions, and providing necessary resources to students, faculty, and families.

Over the course of the nearly two years, I have worked with the Georgia College family and there have been many instances in which I intuitively know that the college is right for me. For example, the campus' physical size is smaller than that of my high school and is the first college campus I have ever been able to walk, with complete independence. My dormitory is on the main campus and the room is completely accessible. Though I don't use a wheelchair, I do use a shower chair to take my showers, and those were the only rooms that have that feature.

More than that, Georgia College has disregarded the "soup can" mentality and shown me how to be passionate and advocate for those things in which I believe. In working with the disability services provider, I have found that advocacy is my passion. As a result, upon graduation, I will further move on to receive my Masters degree in Rehabilitation Counseling to either serve as a vocational rehabilitation counselor for a state agency or become a disability services provider for a university community.

Additionally, I have created a blog with a wealth of resources for people with disabilities to help overcome the challenges of living with a disability. It is my misison to compile the most up-to-date information possible. The reader, then, will interact by suggesting what they like to see, what needs to change, or what may need to be added to make the blog posts better tailored to the needs of the disability community. I will provide updates about the work I am doing within the disability community to gain valuable experience that will enrich my life and those of my readership. I hope to create a dialogue that will extend much further than the blog I have created. I hope it helps shape social change and the societal mindset toward people with disabilities.

I invite you to take the opportunity to visit my blog at
http://empowerpeoplechangelives.blogspot.com/ and look forward to providing you with a plethora of resources, getting to know you, and advocating on behalf of individuals with disabilities together. Will you join me?

In a parting reflection and in the words of Mahatma Gandhi, we must "be the change [we] wish to see in the world."

For more information, please visit the Empowering People Changing Lives Blog or contact Erin Breedlove by e-mail.

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Local Organization Honors
UCP of the Inland Empire as Organization of the Year

UCP of the Inland Empire (UCPIE) recently received an award from the Indio Youth Task Force Meeting on June 25th designating the affiliate their Organization of the Year. "It was completely unexpected and deeply appreciated." says Cindy Stillman, Director of Development and Marketing for UCPIE.

UCPIE received this award through working collaboratively with the City of Indio, CA, to develop their after-school (teen) Community Integration Program at the new Indio Teen Center, which opened in late 2008. In addition to naming UCPIE as Oranization of the Year, The Indio Youth Task Force also honored Scott Trujillo, Indio Teen Center director, as individual of the year.

In March 2009, UCPIE worked with the City of Indio and Girl Scouts of San Gorgonio Council, to form Girl Scout Troop #106 (photos available on Flickr.com), designed to accommodate young ladies with Down's Syndrome and various other developmental disabilities. The troop meets regularly every Thursday at the new Indio Teen Center. The initial investiture ceremony occurred on March 6th. This ceremony involved six young ladies with Down's syndrome. The troop has subsequently grown to include 12 members and is supported by UCPIE staff, as part of their after-school Community Integration Program. The girls have become wonderful community ambassadors and attend many fundraising events, as well as participate in typical Girl Scout activities and other community events.


Additionally, UCPIE has recently developed an interactive Resource Identification DVD & Companion CD. The project was released to the public on July 1st. There will be several ways to access the guide(s).

The project, funded in part by a grant from the City of Rancho Mirage, developed a two-part identification guide to Coachella Valley Resources (and outlying areas of Riverside and San Bernardino Counties). The guide was produced for the use of UCPIE consumers, other families of children, youth and adults with disabilities. Other family support agencies can also access the information and are encouraged to do so.

The DVD video guide, is an introduction of the project developed for individuals that may be more inclined to use a television or who may not have computer internet access. The DVD serves as a general project overview and contains PSA type interviews held with various individuals, organizations and agencies including Desert Arc, Goodwill, Salvation Army, JFK Healthy Families Foundation, Incight, UCPIE, the Cities of Indio and Coachella, The Chairman of the House of Representatives Veteran's Affairs Committee, Congressman Bob Filner & California Assemblyman Manuel Pérez.

This resource guide is also available in compact disc (CD-Rom) format. The CD operates both independently from the internet, providing resource information, addresses and phone numbers of indentified agencies. More importantly, with internet capability, the user of the guide has direct links to agency/organization Web sites with the click of a mouse. From the CD, the user can print copies of the guide in PDF or Word formats.

In addition, the guide will be available for non-commercial distribution and printing via the UCPIE Web site at www.ucpie.org in mid-July.

This is an ongoing project and will be updated and improved regularly. Says, Cindy Stillman, "We have discovered in the production that this could well be a life-long project. Any non-profit agency may submit their information via our Web site, for review and it can become an addition to the guide where appropriate." Soon, UCPIE will add a Quick Reference Guide, specifically for ease-of-use by UCPIE consumers, that will categorize and identify resources differently. For example, 'Basic Needs' Food, Clothing, Housing etc. assisting the UCPIE consumer in accessing information quickly and easily. Plans for the future also include a Spanish version of the guide.

For more information, visit the UCP of the Inland Empire Web site, view photos on Flickr.com or contact Cindy Stillman at (760) 321-8184 x15.

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Monday, July 13, 2009

Capitol Insider - Week of July 13, 2009

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

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Friday, July 10, 2009

UCP Affiliate, Cerebral Palsy Association in Alberta
Vacation Villa Offers Stress-Free Vacation
for Individuals with Disabilities

For many of us, packing up the car and heading for a weekend getaway can take minimal preparations. Head out to the cottage or book a hotel room, pack a cooler, bathing suit and some supplies and head out on the open road. But what if it wasn't that easy? What if you were in a wheelchair?

Individuals facing mobility challenges aren't as fortunate to be able to leave town for the weekend. There are so many things to think about such as..."Will the place be accessible? Can I get into the bathroom? Can the restaurants accommodate my needs?" Not only are there limited vacation places with wheelchair access, but most importantly, as many individuals with disabilities live on assisted income, the cost of taking a vacation is just not feasible.

How can someone with a disability enjoy a stress-free vacation when there are so many things to think about? A vacation without limits is now possible at the Cerebral Palsy Association in Alberta (CPAA) Vacation without Limits Villa in Gull Lake, Alberta. Located in the gated community of Raymond Shores Resort, the Vacation Villa has just celebrated its grand opening and is ready for bookings.

Finally, a vacation rental property for families with special needs! The Vacation Villa will be Alberta's first fully accessible, all inclusive vacation rental property available year round for members with disabilities as well as to non-members and the general public. A vacation spot where families with special needs are fully accommodated: ramps and lifts where they are needed, doorways that work, and lots of fun things to keep everyone happy.

"We are so grateful and excited about the possibility to 'wheel around' this fantastic villa at Gull Lake" says Deborah Berry proud and loving mother of Kyle, her teenage son who happens to have cerebral palsy, and requires a wheelchair for mobility.

It has been nearly eight years since the Berry family has had the opportunity to enjoy a holiday together and have been unable to go on vacation due to lack of fully accessible accommodations. Deborah has struggled, as do most families whose lives are affected by a disability, with planning even the simplest of family getaways.

The two bedroom, 950 square-foot custom made, fully accessible recreational home, is fully stocked with all the equipment you will need, including a roll-in shower, ramp leading up to the back deck, a pool and hot tub lift, and accessible pathways for you to enjoy the great outdoors. Only a short drive from Edmonton or Calgary, and room to sleep 9 people, the Vacation Villa is the perfect destination for the whole family to enjoy some rest and relaxation at an affordable rate.

"We want to make vacationing as seamless as possible for our members," says Janice Bushfield, Executive Director for the Cerebral Palsy Association in Alberta. "Many individuals with disabilities face daily challenges and are in much need of a vacation but often don't have the means or finances to do so."

The Villa can be booked by individuals of all abilities at very reasonable rates, and subsidy is also available for qualifying CPAA members thanks to the Street Family Vacation Subsidy Program. The memorial fund was set up by the Street Family in honor of their late father who created fond vacation memories with his family and son who lived with cerebral palsy and felt it was important for other families to be able to spend quality vacation time regardless of ability.

For more information on the Vacation Villa or the Street Family Vacation Subsidy Program, please visit the Vacation without Limits Web site or call CPAA toll-free at (888) 477-8030.

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Wednesday, July 8, 2009

UCP of Central Ohio: Two Arts Programs
Building Character, Connecting Abilities

The UCP of Central Ohio and Great Western Academy recently received a $1000 grant from the Greater Columbus Arts Council (GCAC) to provide a new mural in the Dowd Center library. The project provided a fun learning experience for students, while incorporating a mentorship for artists with disabilities. A 6th grade class from the Imagine Great Western Academy joined with UCP participants to paint a unique mural. The mural will be dedicated and installed later this summer in the library at the Dowd Center in Columbus.

The goal of The Art of Building Character project was to provide a new and fun learning experience for the Great Western Academy students. Currently, in the classroom, students are learning various character traits and painting techniques. During this project, the students practiced these techniques with participants from UCP.

Prior to beginning this project, UCP participants attended a lecture and discussion on character traits. By learning these character traits, the Great Western Academy students and the UCP participants integrated citizenship, kindness, and integrity in the mural for the Dowd Center. The interaction provided a diverse experience for the elementary students and a mentorship for UCP artists. The Art of Building Character project coincides with the mission of the GCAC by benefiting the Arts-In-School program and the Neighborhood Arts Program.

The Dowd Center is part of the Homeless Families Foundation. The foundation provides an after school program and summer program for the homeless and at-risk youth.

The funding helped the UCP artists and the students of the Great Western Academy to engage in a new learning experience and gain the knowledge and purpose of acceptance and the importance of making learning fun.


Connecting Abilities is an art project created to showcase collaborative works of art created by artists from The Ohio State University and UCP of Central Ohio's Art Bridge Studio. The art project began when a student from The Ohio State University, Morgan Green, began volunteering at the Art Bridge Studio in September of 2008. In the fall of 2009, Green learned about a program through Ohio State, called the Idea Lab, which would allow her to take her passion for volunteering with the artists of UCP to a new level. In fact it would give her the opportunity to share her experiences at the Art Bridge Studio with fellow students.

The Idea Lab provided a grant for Green's project, Connecting Abilities. The Idea Lab chose Green's idea to promote awareness to focus on abilities over disabilities. The grant supplied the artists with the supplies to connect their abilities.

The artists from The Ohio State University volunteered at the UCP of Central Ohio Art Bridge Studio every Friday for 10 weeks. During this time, the artists exchanged pieces as a collaborative effort. The artists from the Art Bridge Studio showed the students from Ohio State their artistic abilities rather than disabilities. It was a back and forth effort by the participants and students to create finished art pieces.

The funding UCP of Central Ohio received enabled UCP artists to develop artistically and provide awareness to Ohio State students and the Columbus community about artists with disabilities.

The pieces will be displayed at the following dates and locations:

For more information, please visit the UCP of Central Ohio Web site or contact Gina Ginn at (614) 279-0109 x209.

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Information & Referal:
July is National Parks and Recreation Month

Summer is the perfect time to get out and explore parks and outdoor recreation areas. The official purpose of National Recreation and Parks Month is to showcase and invite community participation in quality leisure activities for all segments of the population. This includes people with disabilities.

The National Parks and Recreation Association advocates for inclusion, encouraging all providers of park, recreation, and leisure services to provide opportunities in settings where people of all abilities can recreate and interact together. Visit the Association’s State Affiliate page to find out about parks and recreation activities in your state.

Many National parks are accessible. The National Park Service provides lists of accessible trails, accessible camping, accessible vistas, and picnic areas in the section of their website, "National Parks: Accessible to Everyone"

The National Center on Physical Activity and Disability also has State listings of accessible parks and recreation programs.

For more information, contact Lara Terrell at (202) 973-7105.

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Annoucements - Week of July 8, 2009

Affiliate News

Webinars

Seeking Comments

Grant Opportunity

Study/Research/Reports

  • Study Seeks Cancer Survivors Who Had Limitations in Activities of Daily Living Prior to Cancer. The University of Texas in Austin is conducting a two-year study on cancer survivors with pre-existing functional impairments due to disabling conditions such as polio, cerebral palsy, spinal cord injury or sensory impairments. The study is funded by the National Cancer Institute.

    If you have completed active treatment for your cancer, you are invited to participate in a study to help us understand how cancer survivors who had a functional limitation or disability before being diagnosed with cancer take care of their health. Little is known about the cancer experience of people who had a functional limitation prior to their cancer diagnosis and treatment. Your information will help health care providers work more effectively with survivors such as yourself. Compensation is $25 by completing a questionnaire packet.

    If you are a candidate over the age of 21 and have completed active treatment, please call (800) 687-8010 or e-mail at maxhealth@mail.nur.utexas.edu for more information.
  • Disability Scoop: Death Penalty 'Inappropriate' For Those With Mental Illness, Report Says
  • National Collaborative on Workforce & Disability for Youth and the Workforce Strategy Center: Career-Focused Services for Students with Disabilities at Community Colleges (Report)

Other News

Social Media and Web 2.0

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Tuesday, July 7, 2009

Guest Post: Mother Knows Best –
Helpful Tips for Success in School
for Special Needs Students

By Tricia Van Susteren

On September 5, 1988, my son Joey was born 8 weeks early. My first glimpse of him lasted less than 30 seconds. He was blue and silent and was whisked off to be resuscitated. We were naïve at the time he was attempting to make his arrival. The excitement of the impending birth of our first born overshadowed the implications of a way too early arrival. Little by little we began to learn new terminology — apnea, bradicardia, intraventricular hemorrhaging, mild spastic diplegia, and lastly, cerebral palsy. Thus began our new journey of hills and valleys, tears and heartache, laughter and celebrations, and questions with no clear answers.

Because education is a major part of a child's life one of my major concerns was how would Joey do in the schools he was to attend? Would we put him in a school for children with special needs or try mainstreaming him in a public school? How would he be perceived by other students? Would the teachers be sympathetic, and, most of all, would he be given the opportunity and tools to be able to be successful in school and consequently, in life?

For preschool, we placed Joey in a school for kids with special needs where he was extremely successful and happy. After preschool, we made the difficult decision to mainstream him in the public school system.

As anything in life, the public school system is not perfect. While Joey journeyed through the public school setting, I experienced it as a parent. Now that I am a middle school teacher in Texas, I am experiencing how things function on the educational side. As a parent of a special needs child and now, as a teacher, the main thing I would like to emphasize is this: don't assume the teacher knows everything about your child.

As a parent, I assumed that the teachers knew what Joey's diagnosis was and knew how to best deal with it. I should have realized this was not the case when during an Admission, Review and Dismissal (ARD), one of Joey's teachers asked me what his diagnosis was. I naturally and wrongfully assumed it was because she hadn't received his Individualized Education Plans (IEP) or just had not read them.

Now, as a teacher, I have had an eye-opening realization. I have learned that due to confidentiality laws, the IEPs don't list the student's diagnosis and most teachers are not experienced, trained nor educated about any of the special needs diagnoses. So as a parent and a teacher, and with some input from my son Joey, I would like to impart some recommendations that I feel will help your child become more successful in school.

  1. Make a folder with information on your child for each teacher to give to them at the beginning of the new school year. IEPs are often not given to the teacher until 2 weeks after school begins and as stated before, the IEPs lack helpful information about the student's diagnosis. Needless to say, this can make things frustrating for the student and for the teacher. The folder should contain a brief description of the student's special need(s) with a list of things that you feel would help your child be more successful in school.
  2. Try to meet with your child's teachers before or soon after school starts to educate them about your child. As a teacher, I feel it would be very beneficial to make a face-to-face connection with the parent(s) and would be extremely effective to hear helpful advice about your child. The teachers can then ask any questions they may have. Also, depending on his/her age, have your child attend the meeting if possible. They can talk about their concerns and maybe give additional suggestions to the teacher. My son Joey began to attend his ARDs when he was in middle school and it was extremely useful to hear his side of things.
  3. Be sure to communicate with your child's teachers at least once every 1 – 2 months whether it be by e-mail or a short meeting. This way you can voice any concerns about your child and the teachers can ask any questions they may have and make any suggestions or modifications we feel could be added to his/her IEPs. For example, this school year I had a special needs student in my class that was very bright and could verbalize excellent answers to any questions. When it came to writing, he had a great deal of difficulty writing down his thoughts so I had him dictate to me what he wanted to say. This modification worked out great and alleviated a great deal of his frustration. I then suggested to his parents and our Special Education Coordinator that his modifications allow him to dictate or tape-record his responses. I also shared this strategy with several of his other teachers and they began to use it with much success. Later in his next ARD, this modification was added to his IEPs.
  4. Request that most of your child's teachers attend the ARDs or request a copy of evaluations all of your child's teachers have written. Usually before an ARD, the diagnostician or the special education director will ask each of your child's teachers for an up-to-date evaluation on your child's progress. Most of the time, I wasn't given this in Joey's ARDs nor was I told what each of his teachers evaluations were.
  5. With regard to middle school and high school, request that your child be placed in the smaller classes if possible. Most schools will have either a co-teacher or support facilitator in the classrooms that have special needs students so the smaller the amount of students in a classroom will ensure that all students get more assistance from a teacher. Unfortunately this year (2008-2009), my co-taught class had too many students in it (32). It was very frustrating for me to give the one-on-one attention I wanted to give to the special needs students because of the large class size.
  6. Have your child attend any after school tutorials if necessary. This way they will receive more one-on-one attention. Another reason for this is that in the middle school setting some students get embarrassed in the classroom if they are receiving a lot of one-on-one attention from the teacher. They sometimes feel singled out. If they attend tutorials then some of this pressure will be alleviated because they will not have their peers around and may feel more comfortable verbalizing their concerns and difficulties to their teachers.
  7. Lastly, and most importantly, teach your child to become an advocate for themselves. This is a life strategy that a wonderful high school Special Education Liaison taught Joey. Advocating for himself gave Joey more independence and empowerment in and out of school.

I am proud to say that Joey is now a sophomore majoring in Journalism and Political Science at the University of North Texas. No, the road to college wasn't an easy one and yes, he does still have some difficulties and challenges, but he has grown into an independent and responsible young man. If there is one word of wisdom I can impart to you it would be this: given the right tools, love, independence, and support, a child with special needs can succeed in school and in life.

For more information, contact Trisha Van Susteren or Will Hull at (202) 973-7106.

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Monday, July 6, 2009

Take Action: Schedule an Appointment
to Meet With Your Congressional
Representative in August

Congresswoman Lois Capps (D-CA) and Congressman Lee Terry (R-NE) have introduced H.R.868, the Direct Support Professionals Fairness and Security Act of 2009, known in the previous Congress as H.R.1279.

Background
The Direct Support Professional (DSP) workforce is in crisis. Low wages, coupled with physically and emotionally demanding work, has resulted in high turnover and heavy vacancies in both public institutions and private providers of services. This crisis severely jeopardizes the quality of life for people with disabilities. H.R. 868 would take the first important step in stabilizing the direct support professional workforce—a step to ensure that people with disabilities receive the quality supports and services they need from private providers and state and federal funders.

In fact, H.R. 868 acts as a complement to Long Term Supports and Services in Health Care Reform through supporting the Community Choice Act and the CLASS Act highlighted in another Action Alert request to Members of Congress. Together, H.R. 868, the Community Choice Act and CLASS Act will provide additional resources to help ensure adequate and quality supports and services and help for people with disabilities to live and work in their communities. It does so by establishing a 5-year program to provide participating states with additional Medicaid funds in order to increase wages paid to DSPs.

Like the previous bill, H.R. 1279 during the 110th Congress, H.R.868 helps address the workforce crisis by giving states a much-needed option to secure additional federal dollars to help alleviate the direct support workforce wage crisis, a key component of much needed health care reform.

Because of the efforts of the WhoWillCare.net community and other advocates in the disability community, like you, the previous wage bill attracted more than 130 Member co-sponsors when Congress adjourned last year.

With each new Congress every bill essentially resets itself and again, we are asking for your help in making this number even larger in the 111th Congress.

In order to advance this bill in the 111th Congress, it is imperative to get your Representatives in Congress to sign onto H.R. 868 as a co-sponsor. Soon, during the month of August, Members will be back home in their district. This is the perfect opportunity to call your Representative about this issue and make your voice known.

Now is the time to act—call your local Congressional Representative's office today to set up an appointment to meet with your Representative in August to express why this bill is vitally important to the disability community before his/her schedule is full.

The WhoWillCare.net campaign, as part of the national advocacy campaigns of United Cerebral Palsy (UCP) and the American Network of Community Options and Resources (ANCOR), have directly contacted Members in Congress as a collaborative coalition, asking them to again co-sponsor H.R. 868. Now is the time for you to reach out and also ask them to co-sponsor the bill. Hearing from you, their constituent will add another level of importance and urgency for Members to become H.R. 868 co-sponsors.

Take Action and contact your Representative today!
Use the Take Action button located at the top right of this Action Alert, then enter your name and full address for a sample letter you can send directly to your Representative.

Additionally, please take the opportunity to call your Member(s) to set up an appointment while they are home in your district in August by following this link to find the information to make your phone call and stress the importance of this bill.

» Find Your Representative Here «
» Spread the Word: Tell a Friend about WhoWillCare.net «

Remember to personalize your message with information about you, your organization and state. Data on your state can be found within ANCOR's 2008 Direct Support Professionals Wage Study, which compares wages among DSPs employed by private providers in your state with those who work for state-run programs.

For more information, on H.R.868 and the workforce crisis, visit the WhoWillCare "Learn More" Web page or contact Will Hull at (202) 776-0406.

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