Read Capitol Insider for an overview of the week's most important public policy events.
Tuesday, February 9, 2010
Get Podcasts for your MP3 PlayerWednesday, February 3, 2010
Save the Date:
Disability Policy Seminar
on April 12-14 in Washington, D.C.
Bring your voice to Capitol Hill!
Book your room today for this year’s Disability Policy Seminar on April 12-14, 2010, at the Hyatt Regency Washington, D.C.
We need you to educate policy makers and their staff about the national disability issues that affect you and those in your community. Join members and staff of UCP and five partner organizations at this year’s Disability Policy Seminar in Washington, D.C. Culminating with in-person visits to congressional leaders on Capitol Hill, this event will provide valuable information on a broad range of issues:
- Health Care Reform;
- Medicaid, including the Entitlement Commission and state Medicaid issues;
- Employment, including Direct-support Workers;
- Education, including Early Intervention; and
- Discretionary Appropriations.
Event registration opens in February, but you can get a head start by booking your hotel room now. Visit the Hyatt Regency Web site or call 888.421.1442 and reference the Disability Policy Seminar.
This event is brought to you by: United Cerebral Palsy, The Arc of the United States, American Association on Intellectual and Developmental Disabilities, Association of University Centers on Disabilities, National Association of Councils on Developmental Disabilities, and Self Advocates Becoming Empowered.
Check out www.disabilitypolicyseminar.org for more information. We look forward to seeing you there!
Announcements - Week of February 3, 2010
Noteworthy News
- Wall Street Journal: Once-Robust Charity Sector Hit With Mergers, Closings
- UCP of West Central Wisconsin / WEAU 13 News: Young woman proves someone with a disability can fulfill their dreams
- UCP of Central Florida / Central Florida News 13: Foster Grandparents Learn From Foster Grandchildren
- UCP of Greater Birmingham / The University of Alabama at Birmingham (UAB): UAB School of Optometry Honored for Outreach by United Cerebral Palsy of Birmingham
Affiliate Updates
- UCP Purchasing Point newsletter: iNews January 2010
- UCP of Central Minnesota: 12th Annual UCP Stuck in Motion Stationary Bike Race was a success
- UCP of Greater Sacramento: Affiliate has a new Web site
- Easter Seals UCP North Carolina: Food Lion, LLC connects with customers to raise funds in support of Easter Seals services
Affiliate Events
- UCP of Michigan: Sixth Annual Bash for United Cerebral Palsy (Feb. 20)
- UCP of Nassau County: Trivia Challenge (Feb. 22)
- UCP of Illinois Prairieland: 15th Anniversary Great Chefs Tasting Party & Auction (Mar. 7)
- UCP of Rhode Island: 1st Annual 5K "Life Without Limits Walk & Roll" (Jun. 13)
Cross-Cultural Exchange Program
- Mobility International USA (MIUSA): 2010 US/Costa Rica: Cross-Cultural Perspectives on Disability Rights Leadership Exchange Program, a 16-day exchange program to Costa Rica with a focus on youth leadership and cultural perspectives on disability rights (Jun. 16 - Jul. 1, application deadline: Mar. 21)
Webinars
- Network for Good: Ensuring Your E-Newsletters are Read - Not Dead - On Arrival This Year (Feb. 9, 1:00 p.m. ET)
- Network for Good: Making a Switch: How to Change Things When Change Is Hard (Feb. 23, 1:00 p.m. ET)
Disability, Advocacy & Nonprofit/Charity News
- ABC News: Lancet Retracts Controversial Autism Paper
- New York Times: Using Humor in a Campaign Supporting Disabled People
- New York Times: New Rules Promise Better Mental Health Coverage
- Associated Press: Obama's chief of staff sorry for 'retarded' remark
- Los Angeles Times: State plans to close Pomona center for disabled
- White House Middle Class Task Force: Caring for Caregivers
- Disability.gov: Disability Connection January e-Newsletter
Fundraising News
- Network for Good: 12 Questions that Lead to a Better Fundraising Story
- Step By Step Fundraising: 2 Simple Ways to Increase Your Online Giving
Social Networking/Web 2.0
- Beth's Blog: How Nonprofits Can Use Social Media to Power Social Networks for Change: Pepsi Refresh Project: An Insider's View - Guest Post by Bonin Bough
- Beth's Blog: How Nonprofits Can Use Social Media to Power Social Networks for Change: Nonprofit Social Media Strategy Map Workshop In Silicon Valley
- Mashable - The Social Media Guide: The Maturation of Social Media ROI
- Nonprofit Technology Network (NTEN): 25 Ways to Increase Your Organization's Communication Capacity
Next UCP Affiliate Marketing Call is
Thursday, February 18 at 2:00 p.m. ET
The next Marketing call for UCP affiliates will occur Thursday, February 18 at 2:00 p.m. ET. The UCP Marketing Department will distribute email reminders about the call and the call agenda, so UCP affiliates may mark their calendars accordingly.
For any questions, please contact Lauren Cozzi at LCozzi@ucp.org.
Raise Money for UCP Using GoodSearch
on February 10 and Every Day
Did you know you can help UCP every time you shop online and search the Web by adding the new GoodSearch toolbar to the UCP site? That is the concept behind GoodSearch.com and GoodShop.com, and on February 10, UCP will be featured as charity of the day!
GoodSearch.com is a search engine powered by Yahoo that donates approximately a penny per search to charities designated by its users. You use it exactly as you would any other search engine, the pennies add up quickly and it doesn’t cost a thing!
With GoodShop.com you can shop at hundreds of well known retailers including Amazon, Target, Apple, Macy’s, Best Buy, Orbitz, Staples and others. The shopping experience and the prices are exactly the same as going to the retailer directly, but by going through GoodShop, up to 30% of the purchase price is donated to UCP!
Get started supporting UCP by adding our toolbar at www.goodsearch.com/toolbar/-united-cerebral-palsy-ucp-national-headquarters. You can use GoodSearch and GoodShop every day, and be sure to check it out February 10 when UCP is the featured charity.
Information & Referral:
Help People with Disabilities Count in the 2010 Census
The 2010 Census is coming and people with disabilities need to be counted! People with disabilities have historically been underrepresented in the Census.
Census data plays a role in guiding funding for essential community services and other important programs. In fact, the 2010 Census will help communities receive more than $400 billion in federal funds each year for things like:
- Hospitals
- Job training centers
- Schools
- Senior centers
- Bridges, tunnels and other-public works projects
- Emergency services
In the Toolkit Overview, Dr. Robert Groves, Director of the US Census Bureau states that, "Accurate representation and funding are especially important to people with disabilities because this population relies on many government, community and social service programs. However, without an accurate count, vital community services such as health care, transportation and other assistance programs may not be adequate."
The Toolkit contains fact sheets, posters, copy to use in newsletters and more, which can help UCP affiliates and other disability service providers disseminate information and conduct outreach activities about the importance of census participating for people with disabilities.
Help spread the word!
Monday, February 1, 2010
Friday, January 29, 2010
Kudos to United Cerebral Palsy of West Central Wisconsin for Shaping Ashley Parkhurst's Success Story
UCP of West Central Wisconsin is credited in a WEAU.com story that profiles Ashley Parkhurst, an inspiring young woman with spastic cerebral palsy. The affiliate helped Ashley and her family pay for some of the expensive equipment she needs, helping her to live a life without limits.
According to Ruth Gullerud, CEO and Executive Director of UCP of West Central Wisconsin, the affiliate is very excited about Ashley's work in school and in the community. She was an intern at the affiliate last summer, and Ashley is now a college student in the University Transfer Program at Chippewa Valley Technical College.
The affiliate's work in the community continues tomorrow -- Saturday, January 30 -- with the 30th Annual "UCP Star Fest Telethon and Sno Biz." Ashley will be the young adult ambassador to the telethon, which also follows up on Ashley's prior role as the child ambassador to the telethon 15 years ago! WEAU.com will stream the telethon live online.
Young woman proves someone with a disability can fulfill their dreams
A determined Chippewa Falls woman is leaving her mark on the world.
WEAU.com
Jan 28, 2010
By Megan Peterson
A determined Chippewa Falls woman is leaving her mark on the world. She's defying the odds and proving someone with a disability can fulfill their dreams.
She's a 19-year-old girl with an upbeat attitude and great aspirations.
"I want to be living on my own, but my ultimate goal in life would be to have a steady job doing something I love," Ashley Parkhurst said.
Ashley Parkhurst says she doesn't intend to let anyone or anything hold her back from those dreams.
"When someone tells you not to do something or that you can't, that should just give you all the more determination to accomplish your goals,” she said.
Ashley has spastic cerebral palsy. It's a disability that increases her muscle tension.
"As you can see my hands are moving a lot and most of it's involuntary movement."
Despite that movement and a learning disability, Ashley is surpassing everyone's expectations.
"When you have the issues and problems that I do it's all about going against the grain."
Now she's a college student in the University Transfer Program at Chippewa Valley Technical College. It hasn't been an easy road for Ashley as she's worked her way to through school.
"Thank god I had my mom there the whole time to help fight for me."
Ashley uses a lot of high-tech and expensive equipment every day to get around. The chair she uses costs her $40,000 and this van cost $37,000.
Agencies like United Cerebral Palsy of West Central Wisconsin have helped Ashley and her family pay for some of that costly equipment.
"People don't realize how many services these organizations offer until they're gone," she said.
Ashley says if people would look at the world like someone with a disability does they may have a change of attitude.
"It makes you rethink your own life and do I really have it that bad or should I just stop complaining about everything all the time."
Wednesday, January 27, 2010
Announcements - Week of January 27, 2010
Affiliate Updates
- UCP of Michigan: 2010 Michigan Directory of Service Providers for Infants, Toddlers, and Students with Disabilities available online
- UCP of East Central Florida: Released two new commercials created by Brighthouse Networks
- UCP of Central Maryland: Headquarters moved to Hunt Valley, Md.
Affiliate Events
- UCP Land of Lincoln: 2010 Telethon (Jan. 31)
- UCP of Central Arizona: Fishing with Friends (Feb. 6)
- UCP of Huntsville & Tennessee Valley: Havoc Waiter Night (Feb. 8)
- UCP of Greater Kansas City: 11th Annual Barstool Open (Feb. 27)
- UCP of Greater Kansas City: 7th Annual Hats Off to Mothers (May 11)
- UCP of Central Arizona: Bondurant Cup (Mar. 13)
- UCP of Metro Boston: 3rd Annual 5k "Life without Limits Walk and Roll" (Jun. 6)
General Events and Conferences
- Medtronic Global Heroes® (Sept. 3 - Oct. 4, Minneapolis, Minn.)
A cooperative effort between Twin Cities in Motion and the Medtronic Foundation, Global Heroes® is a first-of-its-kind program that brings runners worldwide who benefit from medical technology to Minneapolis and St. Paul, Minn. to run in Medtronic Twin Cities Marathon events. Up to 25 will be selected and awarded two entries to the Medtronic Twin Cities Marathon or Medtronic TC 10 Mile race, including airfare for the Global Hero and a guest, recognition throughout the race, and a $1,000 grant to an associated patient organization. Learn more about Global Hero program guidelines. - SocialMedia.biz: 2010 conferences - Social media, tech, marketing (calendar of various events)
- National Lekotek Center: Making Play Accessible for Children with Disabilities (March 8-10, Chicago, Ill.)
- Mobility International USA (MIUSA): 5th International Women's Institute on Leadership and Disability (WILD) brings together approximately 25 women leaders with disabilities to strengthen leadership skills, create new visions and build international networks of support. During the three-week program, participants will take part in workshops and discussions, conduct on-site visits and participate in team-building activities to explore challenges and exchange strategies for increasing leadership opportunities and employment of women and girls with disabilities internationally. (Application deadline: March 1; Aug. 6-29, Eugene, Ore.)
- University of Wisconsin Milwaukee: Participate in a doctoral research project at the University of Wisconsin Milwaukee about evaluating factors most important to individuals with impairments when they purchase and use medical devices. Participants must be at least 18 years of age and have the opportunity to enter into an iPod raffle (results released in April 2010). The information obtained will enable the university to provide information to medical device designers and manufacturers, regarding features that should be included in medical devices so they are usable by persons with disabilities.
Disability & Advocacy News
- Parent Educational Advocacy Training Center (PEATC): PEATC developed of an Individualized Education Program (IEP) Checklist iPhone application. IEP is an individualized program designed to support educational needs of school aged students with disabilities. It also helps parents of students with special needs become better-informed advocates by making IEP information easier to access.
- Cerebral Palsy Family: Experiences of the Hyndman Family, who's son Nick has cerebral palsy
- Toledo Blade: Perrysburg teen goes to the mat to achieve a life well-lived
- ABC News' Good Morning America: Against all Odds: Dancing with Cerebral Palsy
Information & Referral
- Internal Revenue Service (IRS): Earned Income Tax Credit (EITC) is a program available to millions of people who earn low-to-moderate incomes (Additional resources: EITC info.; Earned Income Tax Credit Can Put Money in Your Pocket)
- Mobility International USA (MIUSA): A World Awaits You (AWAY) is a free online journal including firsthand accounts by people with disabilities about their success in international exchange programs and their advice for others
Fundraising News
- About.com: Nonprofit Charitable Orgs: Do I Have to Register to Raise Funds Online?
- Beth's Blog - How Nonprofits Can Use Social Media to Power Social Networks for Change: Chase Community Giving Contest Ends With Yet More Controversy
- Network for Good: The Online Fundraiser's Checklist - How Do You Ensure Fundraising Success This Year? (free eBook)
- Getting Attention: Nonprofit Marketing Crisis: Survey Shows Messaging Fails to Connect With Key Audiences
- A Small Change: Linkage, Ability, Interest
- Nonprofit Tech 2.0: A Social Media Guide for Nonprofits: What Your Nonprofit Needs to Know About GuideStar, Network for Good and Social Media Fundraising
Social Networking/Web 2.0 News
- Care2.com's Frogloop Blog: Online Communications Planning for Nonprofits
- Beth's Blog - How Nonprofits Can Use Social Media to Power Social Networks for Change: Guest Post by Julio Vasconcellos" Lessons Learned from Twitter Campaigns on Twitcause
- CIO 100: Got Twitter Clout? New Tools Rate You
- KDPaine's PR Measurement Blog: Social Media is Making Measurement More Vertical
- Social Media Examiner: The Future of Social Media: Being Everywhere (a Steve Rubel Interview)
- Social Media Examiner: 7 Ways Posterous Improves Your Social Media Presence
- Nonprofit Technology Network: Giving Your Audience What It Wants
- Kivi's Nonprofit Communications Blog: Integrating Your Website, Email Newsletter and Social Media Sites
Tuesday, January 26, 2010
Information & Referral:
Pharmacological Treatment of Spasticity
in Children and Adolescents with Cerebral Palsy
A new guideline from the American Academy of Neurology and the Child Neurology Society finds botulinum toxin type A to be an effective treatment for spasticity, muscle tightness that interferes with movement, in children and adolescents with cerebral palsy (CP), but poses some risk. The guideline is published in the January 26, 2010, issue of Neurology®, the medical journal of the American Academy of Neurology.
Key findings include:
- BoNT-A works well for treating spasticity in CP, but there is conflicting evidence that it helps improve activity/participation or quality of life.
- When deciding to prescribe a medication, doctors should set a treatment goal for measuring success
- Some medications treat spasticity but not muscle function.
- In some cases, treating spasticity may interfere with muscle function.
- Doctors should weigh the benefits and risks of treating spasticity in CP.
- Spasticity is just one of many CP-related problems that people with CP face.
- People with CP vary greatly in circumstance, so whether and how to treat warrants careful thought.
Read a Q&A with the lead guideline author
More information about common treatments for cerebral palsy and other developmental disabilities.
Disclaimer: UCP does not recommend or endorse any particular treatment method or medication.
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