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."
Affiliate Updates
Affiliate Events
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.)
Research Opportunity- 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
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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.
The complete professional guidelines can be found
here under "Featured Guidelines." There is also a summary version for
families and patients.
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.
As the nation prepares for the 20th anniversary of the Americans with Disabilities Act (ADA) on July 26, 2010, the U.S. Department of Labor's (DOL) Office of Disability Employment Policy (ODEP) and other Federal agency partners announced a six-city ODEP 2010 Listening Tour to address critical employment issues facing people with disabilities.
Each Listening Session is an opportunity for members of the public to provide input to senior Federal officials regarding their ideas for more effective ways to employ all people with disabilities — including women, Veterans and minorities with disabilities — sharing what is working in their regions to increase employment. ODEP is particularly interested in input from the following people:
- Individuals and Consumers: youth and adults with disabilities, parents and caregivers;
- Employers: public and private; and
- Service Providers and Advocacy Organizations (such as employment services and partners): independent living centers, one-stops, state vocational rehabilitation programs.
The ODEP 2010 Listening Tour launched this past Friday, January 22 in Dallas, and future tour dates and cities include:
Read Capitol Insider for an overview of the week's most important public policy events.
UCP has updated the online Disaster Information Center that includes information regarding relief efforts, recommendations for donations, how UCP is supporting disaster relief, and future UCP plans to help people with disabilities affected by the earthquake that hit Haiti on January 12. The Web page is available from a hyperlink on the UCP home page at www.UCP.org and in the News section online at www.ucp.org/ucp_generaldoc.cfm/1/8/28/28-28/9766.
UCP affiliates across the country also have relief efforts underway, including the following:
- UCP Wheels for Humanity has provided 100 wheelchairs to Direct Relief International, 65 wheelchairs to Operation USA for immediate air shipment into Haiti, and is reaching out to its international disaster relief partners. After initial needs are assessed, UCP Wheels for Humanity is prepared to donate more wheelchairs and ambulatory aid equipment for Haiti if needed.
- Several UCP affiliates have created Haiti-specific relief funds. UCP of Nassau County is raising funds, and UCP of South Central PA has instituted mobile donations and reports they are going very well. Please remember that funds raised specifically by UCP affiliates for Haiti disaster relief must be directed for that purpose. Following Hurricane Katrina, the IRS and State Attorney Generals began carefully monitoring this.
- UCP is working with affiliates to direct long term assistance to people with disabilities in Haiti. UCP is in contact with several developmental disability organizations to identify exactly what will be needed in the next few months. UCP of South Florida has already collected thousands of dollars in cash donations and truckloads of supplies, including medical supplies and adaptive equipment, in support of this effort out of Miami.
At this point, the UCP national office recommends monetary donations be made to the American Red Cross International Response Fund designated to Haiti relief, or to the ANCOR Foundation's CARES Fund, which will assist people with disabilities who are caught up in the devastating earthquake in Haiti. ANCOR’s Foundation is directing funds to CARES, a partner in the Dominican Republic, which is engaged in cross-border emergency assessment and support for people with disabilities.
January is Cervical Health Awareness Month. The month, sponsored by the National Cervical Cancer Coalition (NCCC) highlights the importance of early detection of cervical cancer and issues related to cervical health and human papillomavirus (HPV).
NCCC reports that women with disabilities are much less likely to receive routine preventative screenings and are at a higher risk for delayed diagnosis of cervical cancer, primarily for reasons of environmental, attitudinal and informational barriers.
You can help increase awareness of this issue in your community. Request public awareness materials from NCCC by calling 818-992-4242 or send an e-mail to rbiety@nccc-online.org.
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Petition
- A group of self advocates with disabilities and students in the Partners in Policy Making program at the Virginia Department of Disabilities have combined efforts on a united goal — to have disability history taught in all schools, nationwide. They believe that teaching the history of the disability rights movement and highlighting the positive impact people with disabilities have had on technology and society, will help support the full inclusion of people with disabilities in society.
This group is currently collecting signatures on a petition to ask the U.S. Department of Education to fund a Disability History Grant for use by school systems in developing this curriculum. They are asking organizations who represent people with disabilities to support their efforts by signing the petition and sharing the link to the petition:
http://www.gopetition.com/online/33286.html
and their Facebook page:
http://apps.facebook.com/causes/395159/97706668.
Award Nomination Opportunity
- UCP: Awards for Excellence (Application deadline: Mar. 19)
- The HSC Foundation (HSCF): Advocates in Disability Award (PDF) recognizes a young person between the ages of 14 and 26 in the Washington, DC Metropolitan area who is dedicated to empowering people with disabilities (Application deadline: Mar. 4)
Disability & Advocacy News
Fundraising News
Social Networking/Web 2.0
Read Capitol Insider for an overview of the week's most important public policy events.
Monday, January 18 is the Martin Luther King, Jr. Day of Service. In 1994, Congress designated the Martin Luther King Jr. Federal Holiday as a national day of service and charged the Corporation for National and Community Service with leading this effort. Taking place each year on the third Monday in January, the King Day of Service is the only federal holiday observed as a national day of service – a “day on, not a day off.” The King Day of Service empowers individuals, strengthens communities, bridges barriers, addresses social problems, and moves us closer to Dr. King’s vision of a “Beloved Community.”
To learn more and find service opportunities and announcements, please visit www.serve.gov/mlkday.asp.
For information about the King Day of Service, please visit www.mlkday.gov.
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January 10-16, 2010 has been designated as National Influenza Vaccination Week (NIVW). The week is a national observance established to highlight the importance of continuing influenza vaccination, as well as foster greater use of flu vaccine after the holiday season into January, and beyond. Since the spread of 2009 H1N1 influenza is likely to continue into the new year, many people, including those in high risk groups, still have not been vaccinated.
As reported in a previous UCPeople article, some children and adults with disabilities and other health conditions are at higher risk of contracting the flu.
One of the many goals for NIVW is to engage at-risk audiences who are not yet vaccinated, hesitant about vaccination, or unsure about where to get vaccinated. Community groups can help spread the word using free print materials and Web tools created for NIVW.
Have you been engaged in any flu prevention awareness activities?
Let us know by leaving a comment below.
Additional Resources:
Have a question about Information and Referral services? Ask Lara! Please contact Lara by e-mail or reach her by phone at (202) 973-7105.
Read Capitol Insider for an overview of the week's most important public policy events.
Despite being born with cerebral palsy (CP), Brooke Larrabee is the lead accountant as an Army civilian employee with U.S. Army Forces Command's G-8, Resource Integration Division at Fort McPherson in Georgia.
Larrabee was recently presented with the 2009" Army Outstanding Employee of the Year with a Disability Award." This Army-wide award identifies, recognizes and publicizes the achievements of outstanding employees with disabilities who have made significant contributions to the Army mission, resulting in opening employment opportunities for other people with disabilities. "Overwhelmed, overwhelmed," said Larrabee about being selected for the award. She added, "I honestly had forgotten that they had put me in for this award, and it's a shock. My parents raised me to work for what I want... Just because I have physical limitations, it doesn't stop me from doing whatever I want to do in life. I don't consider myself disabled. I think I can do whatever an able-bodied person can do."
Larrabee's supervisor, Sandra Butler, G-8 Branch Chief, Fiscal Policy & Systems, Resource Integration Division explained, "She is a really hard worker - a very, very hard worker, and we're extremely proud of her."
Her father, Col. (Ret.) Willis Larrabee said "We thought this [story] may inspire others as they adjust to and overcome the challenges of CP." Indeed, Larrabee is living a Life Without Limits, and truly a wonderful example for others.
Learn more about this prestigious award and Larrabee's impact over the course of 18 years as a civilian employee with the U.S. Army on the U.S. Army Web site.
Affiliate News
ADA Anniversary Tour
- As the nation gears for the 20th anniversary of the Americans with Disabilities Act (ADA) on July 26, the U.S. Department of Labor's (DOL) Office of Disability Employment Policy (ODEP) and other Federal agency partners are proud to announce a six-city ODEP 2010 Listening Tour to address critical employment issues facing people with disabilities. The first two cities have been confirmed and accessible PDF flyers are linked below:Three key stakeholder groups are invited to present:
- individuals and consumers;
- disability organizations, advocacy groups and service providers; and
- employers (public and private sector)
Other ODEP 2010 Listening Tour cities in February and March include: Chicago, San Francisco, Atlanta and Boston. Specific dates and locations will be updated soon.
Assistant Secretary Kathy Martinez, ODEP, DOL, is spearheading the Listening Tour to gain insights into both systemic barriers and best practices to determine:- More effective ways to increase employment of women, Veterans and minorities with disabilities;
- Identify federal and state systems that effectively collaborate to achieve successful employment outcomes for people with disabilities; and
- Determine three top issues on which the Federal government should focus for increased labor force participation by people with disabilities.
Please contact Tari Hartman Squire at (310) 650-0595 with questions.
Scholarship Opportunity
Webinars
- Diosa Communications: Web 2.0 Webinar Series (scheduled through April 27, 2010). Heather Mansfield, owner of DIOSA Communications, gives webinars on how nonprofit organizations and small businesses can successfully use social media and mobile technology. Her webinars focus on practical how-to advice and demonstrate in real time, click-by-click best practices that Heather has learned from spending more than 40 hours a week on social media sites for the last four years. A firm believer in putting your money where your mouse is, Heather also donates 10% of the gross proceeds from her webinars to her favorite nonprofits.
Research/Reports
Other News
Fundraising News
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The National Birth Defects Prevention Network (NBDPN) sponsors an Awareness Month every January to raise awareness about the causes and prevalence of birth defects and how health care professionals and the general public can help prevent birth defects. This year's theme focuses on addressing diabetes in women of childbearing age as a risk factor for birth defects.
NBDPN is a group of individuals involved in birth defects surveillance, research and prevention. It was created to establish and maintain a national network of state- and population-based programs for birth defects surveillance and research. The network assesses the impact of birth defects upon children, families and health care; identifies factors that can be used to develop primary prevention strategies; and assists families and their providers in secondary disabilities prevention.
NBDPN provides Awareness Month resources such as sample press releases, proclamations, public educational materials and suggestions on how to use the materials. Please help spread this information in your community.
You may read more about how diabetes impacts people with disabilities from a previous UCPeople article.
Additional Resources:
Read Capitol Insider for an overview of the week's most important public policy events.
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