Kids As Self Advocates (KASA) in the News
by Karen Anzola, Family Voices Staff
Sarah Liebskind, a leader with the Connecticut “chapter” of KASA, was featured in an article that appeared in the September 26, 2006 edition of the Hartford Courant (© 2006). Sarah, a teen with cerebral palsy, recently spoke at a Connecticut state summit on children with disabilities and special health care needs sponsored by the Connecticut Office of Child Advocate. About 200 people, many with disabilities, attended this second in a series of day-long events designed to highlight the lack of appropriate care, education, protection and legal representation for Connecticut children with disabilities or special health care needs.
“The 19-year-old Cheshire High School student has tangled with private insurance companies and worked to eradicate harmful stereotypes by leading Kids As Self Advocates, a group of Connecticut teenage activists with disabilities. ‘I am a person, not just a medical condition,’ Liebskind said. ‘People shouldn't focus on what I can't do, but on what I can do, which is a lot. If we spent more time on that, I think there would be no limit on what children with disabilities could do.’” (Advocating For Children With Disabilities, Penelope Overton, © 2006, Hartford Courant. Contact Penelope Overton at poverton@courant.com)
Congratulations to KASA Task Force Member Tyler Greene who has developed and produced a DVD—“I’m Tyler”—to promote ‘ability awareness.’ The steps Tyler took to create, produce and share this video as well as his keen insight are documented in a recent article in the Waterloo-Cedar Falls Courier. Originally, Tyler, who has cerebral palsy, wanted to make a film for his Eagle Scout project. As his idea began to take shape (and become a DVD), Tyler came to the conclusion that no one was doing anything to spread the word about “ability awareness,” a term coined by his dad as an alternative to the phrase “disability awareness.”
“The point of the DVD is to spread ‘ability awareness’ — or ‘recognizing people for what they can do, not what they can't do,’” Tyler says in an interview (Wind, Waterloo-Cedar Falls Courier, © 2006). With the support of his parents, Tyler worked with a public relations firm in Cedar Falls to create and produce the video. Using grant funds awarded through a youth leadership fund through his church, Tyler hired a Minnesota production company to produce 600 copies of the DVD. Tyler’s goal is to send a copy of the DVD to every one of the 365 school districts in the state. To learn how you can request a copy of Tyler’s DVD, go to www.imtyler.org. "Is there someone you know who needs you to have an open mind, some creativity and a little extra time? I know there is," says Tyler. "Please make a difference." (West High student produces DVD to promote “ability awareness”, Andrew Wind, © 2006, Waterloo-Cedar Falls Courier. Contact Andrew Wind at (319) 291-1507 or andrew.wind@wcfcourier.com.
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
National Family Caregivers Month: November 2006
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
Network News
Our heartfelt sympathies are extended to Deana
O’Brien (FV MO) and her family upon the death of the recent death of Deana’s mother in California after a long
illness. Deana, as many of you know, is a tremendous asset for families in Missouri, and has been a wonderful
addition to our National Network. Our thoughts and prayers are with you, Deana.
Family Voices of Tennessee at the Tennessee Disability Coalition has hired three part-time parent consultants to inform and support parents of children with hearing loss. The three are working exclusively with the Newborn Hearing Screening project funded by the Tennessee Department of Health through a federal grant. They are Wonda Houston of Memphis, Teresa Turnbo from the greater Nashville area, and Camille Keck of Knoxville. Each has a child with a hearing loss and a strong desire to assist other families to manage the needs of their children with a hearing loss or related condition. As parent consultants for Family Voices, the three are working to build and strengthen family networks and resources for families of children and youth who are deaf or have hearing related conditions. They also promote awareness of early detection, diagnosis and treatment of hearing conditions. They coordinate their outreach activities with service providers, hospitals, clinics, and other programs that serve or refer families dealing with hearing loss. The parent consultants work in concert with Family Voices’ three regional family resource specialists who serve families across the spectrum of disabilities and chronic illnesses of children and youth.
News You Can Use:
Resources and More
Announcing the Kids As Self Advocates [KASA] Youth As Leaders ManualDoes your organization want to…
…be more accountable to the population you serve?
…be accessible to a broader audience?
…create opportunities to learn?
…enhance sustainability?
…increase credibility to policymakers and the public?
…influence future leaders?
Then include Youth as Leaders! YOUTH AS LEADERS: A “How-To” Manual on including youth as leaders in your organization, use our online order form at http://www.familyvoices.org/catalog.php. For more information, please contact: Naomi Ortiz, Project Coordinator, Kids As Self Advocates Youth Information, Training and Resource Center at ortizn@fvkasa.org.
New National Institutes of Health Website for Child Health and Human Development
Need information on reading disability? Want to know how much calcium is
in a serving of broccoli? Trying to find out how to apply for a research
grant to study spinal cord development in zebrafish? Check out
http://www.nichd.nih.gov. The component of the National Institutes of Health that conducts and supports research on human development, medical rehabilitation, and the
health of children, adults, families, and communities, launched its
redesigned Web site. The new National Institute of Child Health and
Human Development site provides easy access to information for patients,
the general public, scientists, and the news media.
From the Associated Press, September 14, 2006. . .N.Y. to require all hospitals to have
translators: Past common practice of family and friends translating posed problems
ALBANY, N.Y. - New York will require all hospitals to provide skilled translators amid fears that family members can be unreliable translators for
non-English speaking patients. The reliance on friends and family to translate for patients — a common practice in exam rooms — can interfere with
medical care, advocates say. A well-intentioned niece may hesitate to share upsetting news, or a patient might not disclose symptoms for fear of alarming
their child. In other cases, information may just get garbled. "It impedes the ability for information to flow freely and violates patient confidentiality
laws," said Adam Gurvitch, director of health advocacy at the New York Immigration Coalition, which pushed for the new regulations that took effect Wednesday.
http://www.dos.state.ny.us/info/register/2006/sep13/pdfs/rules.pdf (see pages 11- 12)
Mamasource. . .
Mamasource is a network of local moms’ group around the country. Moms tap into their local chapters to find local family support resources,
parenting advice and support groups. There are no listing or member fees. Mamasource is an invitation-only group, so to sign in simply go
click on the link provided http://www.mamasource.com/register/11695823179753717761 to link your state organization with others committed to
providing families with resources and information.
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--Gérard Jugnot