Parent Leadership in Action - Ask Uncle Sam
by Karen Anzola, Family Voices Staff
We could not pass up an opportunity to share an example of parent leadership at its best
(and would be remiss if we didn’t pass this story along to you). Rodney Farley, Family Voices
of Arkansas, is a member of the Arkansas Disability Policy Consortium (ADPC). Every two years
when there is a Governor’s race in AR, the Consortium hosts a summit at a local hotel. All
candidates for political office are sent invitations for lunch, and those running for the
office of Governor, Lt. Governor, and Congress are asked to participate in a panel discussion.
Follow up calls are made by persons living in their districts. Families and people with
disabilities are invited and encouraged to attend the summit. Stipends are available if needed.
The morning of the ADPC Summit, questions are taken from the audience. The questions are compiled and then shared with the panel following lunch. All candidates have the opportunity to introduce themselves and hear the questions from the audience. The summit affords families the opportunity to ask questions of and share concerns with candidates from their districts.
This year’s summit included a surprise visit from Uncle Sam (a.k.a. Rodney). Rodney chose to dress like Uncle Sam to draw attention to the issues facing children and youth with special health care needs (CYSHCN). When he spoke with candidates, Rodney handed them a fact sheet with information about CYSHCN in Arkansas printed on red paper with the message, “Will YOU be a champion for disability rights?” (click here to read the fact sheet). We are sure Rodney’s unique approach made him, and the children and youth he is advocating for, hard to forget!
PBS Stations Nationwide to Feature Inclusion Documentary Film
by Polly Arango, Family Voices Board of Directors
The documentary film “What Does Normal Mean?” has been picked up by more than 60 PBS stations around the country. That is a
triumph for all of us who care about kids with disabilities and inclusion! Most of the stations plan to show the film in
November; some stations may show the film some time after November. WXXI in Rochester, NY, for example, will
show “What Does Normal Mean?” in January ‘07, with plans for major outreach and publicity surrounding its viewing.
This presents a perfect opportunity for family leaders and other advocates in the Rochester area to work with WXXI
to mount a media campaign around inclusion prior to the film’s release.
A list of PBS affiliates that will be showing “What Does Normal Mean?” is available by contacting one of the people mentioned below. Please check to see if your local station will carry the film. If your station is carrying it (a YES vote on the list), we suggest you immediately contact the station to find out when the movie will be shown (not at 5:00 am, we hope) and offer to help the station with publicity and outreach. For example, when “What Does Normal Mean?” was shown by the PBS affiliate in Albuquerque last spring, the station’s weekly news program featured segments of the film and a panel discussion about special education with educators, parents, and students as a run-up to the documentary. The station also ran a series of ads and press releases prior to the show. A popular columnist for the statewide newspaper interviewed families and professionals about inclusion for one of his Sunday columns. Thus, the issue of inclusion received lots of good publicity throughout New Mexico in the days and weeks before and after “What Does Normal Mean?” was shown.
Soon, we’ll have a sample “What Does Normal Mean?” press release and a list of media recommendations for you to use as your local PBS station prepares for showing the film. You will be able to access that information through the Family Voices website, www.familyvoices.org.
PLEASE NOTE that many PBS stations either said NO to showing “What Does Normal Mean?” or could not decide and voted MAYBE. That list is also available upon request. We urge you to get together with other inclusion advocates and work with your local PBS affiliate if they voted NO or MAYBE. . . and persuade them to show this excellent documentary film!
The Family Voices folks who worked on “What Does Normal Mean?” are Polly Arango, Executive Producer/Writer (polly@algodonesassociates.com) and Bridget Via, Family Liaison/Featured Family (viazoo@aol.com).
National Family Caregivers Month: November 2006
Supports National Family Caregivers Month 2006 And its Caring Every Day Messages
This November there will be a special emphasis on the need for all of us to help family
caregivers protect their health in order to have a more satisfying life and be better able to provide their
loved one with the best care possible.
Family Voices is pleased to be an endorser of NFC Month and bring attention to the needs of family caregivers.
We encourage you to spread the word about this initiative to protect family caregivers’ health and incorporate
its messages and materials into your NFC Month celebrations this year. Celebrating NFC Month, this November,
in your community can bring attention to your programs and raise awareness about Family Voices.
To order a Family Caregiver Kit and participate in National Family Caregivers Month 2006, call
800/896-3650 or visit www.thefamilycaregiver.org
Just Released
Bright Futures: Family Matters - Tips for a Healthy Fall
Check out this latest issue full of tips and resources to keep your child healthy, including information on well-child visits,
immunizations, sleep, nutrition, and more! This issue's Family Resource Corners covers such topics as family routines, adolescent
attitudes, backpacks, and bullying.
As with all Family Matters editions, resources in Spanish are highlighted. Family Matters is available on the Bright Futures
for Families Website, www.brightfuturesforfamilies.org or contact Peggy Curran,
pcurran@familyvoices.org to subscribe.
SAVE THE DATE!
Family Voices 15th Anniversary Gala Celebration and National Conference
Join Family Voices in our nation’s capital for a celebration of 15 years of
family/professional partnerships and accomplishments! Meet with veteran and emerging family and youth
leaders and national and state partners from across the country. Gain new understanding of current
critical issues: Medicaid policy, information technology, family-centered care, quality assurance,
wellness, transition, youth perspective, cultural competence and much more. Use your voice to
impact the future of health care for children and youth with special health care needs!Don’t miss this opportunity to explore examples of family-centered best practices for improving systems of health care for children and youth with special health care needs. Working together as families, partners, and communities, we can move forward the agenda of health care and build a better future for our children.
FEATURED EVENTS:
- May 23, 2007: Leadership Institute, a 1-day training at the Grand Hyatt (registration limited)
- May 23, 2007: 15th Anniversary Gala Celebration, an evening of celebration at Decatur House
- May 24-26, 2007: National Conference, 2 1/2 days of keynote sessions, workshops, networking opportunities, and more at the Grand Hyatt
Network News
Beth MacDonald (FV DE) was recently recognized for her nine years of service as Parent Chair of the Delaware
Interagency Coordinating Council (ICC). “Everywhere she went, Beth made sure that parents were included,“ said Rosanne
Griffe-Cabelli, Part C Coordinator for Delaware. Congratulations, Beth!
In addition, Beth and her fellow Partners in Policymaking facilitators recognized 16 graduates of Delaware’s Partners in PolicymakingTM eight-month course on Saturday, October 21st. Partners in PolicymakingTM has been sponsored by the Developmental Disabilities Council of Delaware since 1993. Since that time, over 200 Delawareans have taken the training program. The purpose of the program is to teach best practices in disability and the competencies of influencing public officials. This program was made possible primarily by funds provided by the Federal Administration on Developmental Disabilities. Longstanding partners of this program include the Delaware General Assembly, the Department of Education, and the Interagency Coordinating Council.
News You Can Use:
Resources and More
Choices Options Resources EducationWashington PAVE has a program called Choices Options Resources Education (CORE) that has a strong focus on Transition. The mission of CORE is to provide accurate and consistent information about adult services for people with disabilities, their families and supporters. Cassie Johnston (FV WA) serves on the Advisory Panel for this program. Check out Project CORE at www.projectcore.org
Youth Fact Sheet Series
The Waisman Resource Center (WI) has had a hard time keeping their recent
transition publication, the Youth Fact Sheet Series, in stock. To download as many fact sheet series as you wish, go to
www.waisman.wisc.edu/hrtw/YFS.pdf Topics include: preparing for technical college; preparing for 4-year college; the role of DVR and
getting a job; getting involved in your IEP; staying out of trouble; and contacting your legislator.
Movie: Little Man
“Little Man,” an award-winning documentary written,
produced and directed by Nicole Conn, tells the story of Nicole’s son, Nicholas, born prematurely, and the journey her
family takes with Nicholas.
Tim Grierson of LA Weekly calls the film "an altogether riveting portrait of motherly devotion at its
most primal." For more information on this
movie, now available in DVD, please go to
www.littlemanthemovie.com .
Native American Fatherhood Conference
The Native American Fatherhood and Family Association (NAFFA)
cordially invites you to participate in the 1st National Native American Fatherhood Conference, “Weaving Fatherhood into Criminal Justice, Education,
and Human Services”, on November 13-15, 2006, in Mesa, Arizona. The conference will focus on how Native American fathers are served, treated and
impacted by these systems. In addition, the conference will address how men and families benefit from fatherhood programs and foster positive
changes within their community. For more information, go to www.nativeamericanfathers.org or to the National Fathers Network website,
www.fathersnetwork.org.
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