The Family Voices Network is made up of dynamic, informed, articulate parent leaders who have advocated over time for changes to the health care systems their families must access for care for their children and youth with special health care needs. It is no surprise that many of the children of these parent leaders are themselves “trailblazers” and well on their way to becoming self advocates. Two young adults who have been featured in local newspaper articles recently are Lizzy MacDonald (DE) and Zach Feist (ND). Read on to learn more.
Caesar Rodney students were used to seeing Lizzy MacDonald weave through the hallways at school in her motorized chair.
This day would be different.
For her high school graduation, Lizzy -- who has a form of dwarfism and stands just 2 1/2 feet tall -- wanted to accept her diploma like every other graduate. That meant no wheelchair with the fat tires and Washington Redskins mascot on the back rolling across the commencement stage. Just her metal crutches and her white dress shoes -- a toddler's size 8 1/2 -- holding her steady.
It didn't matter that her classmates towered above her. She couldn't control that. But her determination -- that she held firmly in her grasp.
"I know I'm short. It surprises people when they see me. But really, they have to get over it," said Lizzy, who is 18 and lives in Dover. "I'm just like them, but little. I can do what they do, just maybe in a different way."
For little people like Lizzy, it can be a daunting task to navigate a world in which you don't fit. Nearly everything from car pedals and fast-food counters to ATM machines and shopping carts is designed with the average-height person in mind. Door locks are too high. Clothes don't fit without extensive alterations.
Growing up small means a stuffed bookbag can feel like toting around cannonballs. Writing is a chore when your fingers go numb holding a pen for too long.
It doesn't get any easier as adults. Even then, little people make constant accommodations, whether it's bringing a stool to reach the filing cabinet at work or using a metal claw extender to reach the top shelf at the grocery store. Taken individually, these challenges may not seem like much. But as a whole, they illustrate the struggle for little people when one size doesn't fit all.
Click here to read the entire article.
Every step, every play, every hit is a statement: I can do this just as well as anyone.
We congratulate Nora Wells as a recipient of the MCHB's Director's Award presented by Peter C. van Dyck, M.D., M.P.H., Associate Administrator MCHB, HRSA, at the recent MCHB Partnership Meeting in Washington, DC. Nora has been a passionate, articulate advocate for families of CYSHCN since the birth of her son, over 30 years ago, and is currently the Director of the National Center for Family / Professional Partnerships (NCFPP) at Family Voices.
In her career, she has published numerous professional articles and family-friendly resources, served as an advisor to the development of the National Survey of CSHCN, been instrumental in the design and use of data measures for Family-to-Family Health Information Centers, and served as a mentor to many, many family leaders.
As noted by Dr.van Dyck "Nora is what we could call a leader across the life-span who helps families, children, youth and now adults with her diligence to equality, her commitment to quality, and her honesty."
Way to Go, Nora!
Family Voices welcomes Bev Baker-Ajene as the new Project Associate on the IMPACT project, reporting to Betsy Anderson.
Bev brings a variety of experiences & skills to Family Voices, including website design and grants administration. She will complete her BS in Graphic Design, specializing in website design, in December 2008.
Bev is a single parent of a six year old daughter, Yami, who was born with Cerebral Palsy. Bev has participated in Family TIES programs, focus groups, and parent-to-parent opportunities over the past two years.
Bev will work in the Boston office and can be reached at bbajene@familyvoices.org or (617) 399-8323.
Welcome Bev!
Family Voices expresses condolences to Rick Skagen, Network Member in WY, in the passing of his father.
KASA wants to hear from youth with disabilities (ages 12-25) about their experiences with paraprofessionals (paras). If you are a youth and want to share your ideas/opinions in order to help improve they way paras work with youth, then please complete this SURVEY. KASA will be compiling the results of this survey in their second White Paper. Their first White Paper, “Standardized Testing: What Youth with Disabilities Have to Say” is available from through the KASA website or the Family Voices Catalog.
Many exciting initiatives are taking place in Family Voices Region 2 (New Jersey, New York, Puerto Rico and Virgin Islands). In New York, a parent leadership group and youth group are working together with KASA (Kids as Self Advocates) youth providing input on transition. Recently, the Youth Advisory Council met with the youth leader group and parents, supported by funding through an Integrated Community Services grant. Youth leaders were recruited statewide through youth groups, counties, and parent agencies. Parents were added to Family Champions and were asked to share their experiences with and information on transition. A transcript of all the proceedings was prepared, and New York now has great information to share. One of the participating young adults was 100% deaf and used the CART services.
In Puerto Rico the Title V Committee, including representatives from the CYSHCN program/Health Department, the Governor’s office, Center for Independent Living and Family Voices PR, is exploring how they can provide workshops for medical professionals and students who are going to be doctors regarding children with disabilities so they understand the issues faced by children and families. NJ SPAN, home to Family Voices NJ and the NJ Family to Family Health Information Center, has shared information about their Medical Student Education Project with PR. Family Voices PR continues to work “to get the word out” regarding CYSHCN, most recently via the radio!
In an earlier edition of Friday’s Child we reported that New Jersey SPAN was selected by IBM to participate in its ˇTradúceloAhora! translation program. This grant program uses a special, enhanced version of IBM WebSphere Translation Server software with added functionality and refined translation capacity to translate web sites and email from English to Spanish for schools and community organizations. One exciting outgrowth of this support occurred this past month. A parent whose daughter has significant health needs and who often has to wait in the emergency room for as much as six hours used one of SPAN’s forms to get her doctor to write her a prescription for a sign language interpreter for her daughter and a Spanish interpreter for her. She went to the emergency room, showed them the prescription from the doctor, and within 10 minutes had both a sign language and Spanish interpreter working with her!
Bruce Orr, Family Voices DE, has developed an inaugural workshop that is sure to empower parents and grow their level of participation in the IEP process. This workshop teaches: (1) strategies to support parents in being confident participants in the IEP process; (2) how to get support from the educational system when developing and setting goals for your child; and (3) how to write an IEP Vision Statement for your child. Orr, an advocate for children and families with more than 20 years experience, launched this workshop in September 2007 in DE. Bruce’s vision is to “take it on the road” and share this workshop with other parents and caregivers. To learn how you may include this training in an upcoming event, please e-mail Bruce at BruceOrr@AbilityAdvocates.net
Family Partnership hosts the 7th annual 2007 Parent & Caregiver Retreat, an event for parents, legal guardians and caregivers (18 and older) of children/youth/adolescents with special health care needs, in Columbia, MO, November 2-3, 2007. The purpose of the retreat is to provide participants with a relaxing and educational environment to learn about new area resources & network with others from across the state of Missouri. The 2007 theme “DEAL OR NO DEAL – ALWAYS YOUR CHOICE!” focuses on family involvement and the roles that family members play when partnering with providers and accessing services to meet the needs of their children with special health care needs and their families. Click here for more information, including online registration.
Opportunity for Dental Forums for CYSHCN
Announcing: The One Application
At the Family Voices Conference in Washington in May 2007, Adrienne Akers made a presentation about the Universal Application System/Utah Clicks that many attended. This web-based universal screening and application system was specifically designed to make it easier for families to find and apply for your state's health, human and work force services through a user-friendly, streamlined process. The system is now called The One Application and is available to other states through Dynamic Screening Solutions, Inc. The powerful eligibility module screens clients for services and benefits while allowing for flexibility across multiple state agency requirements. Happy customers and reduced administrative costs offer an immense value to states. Click here to take a brief online tour of The ONE Application. Your comments and questions are welcome. You may also schedule a more in-depth, interactive online demonstration for you and your colleagues at your convenience and at no cost. For additional information, also visit www.go-dss.com
CATCH Residency Training Grants: 2008 Call for Proposals
The Community Pediatrics Training Initiative (CPTI) is teaming up with the Community Access to Child Health (CATCH) Program for the 2nd year to provide a grant opportunity targeting pediatric residency training programs. The mission of this program is to provide support to residency programs to build sustainable opportunities for residents to gain experience working on community-based child health initiatives that increase access to medical homes or specific health services not otherwise available. Grants up to $12,000 will be awarded on a competitive basis to pediatric residency programs that submit proposals to plan and implement community-based child health initiatives as part of the training curriculum over the course of 16 months. A pediatric faculty member must oversee the project and provide mentorship for residents participating in project activities. The 2008 Call for Proposals and Application is now available online. Proposals are due by no later than 4pm Central on November 16, 2007. For more information, please send questions to: cpti@aap.org.
