January 16, 2009
January 2009—the start of a new year, and a new administration in the White House. President-elect Barrack Obama has made it clear he is seeking input from the people about issues that concern all of us, and Family Voices is stepping up to the plate. Parent leaders from across the country, individually and collectively, are taking the administration up on the offer and making sure that the voice of families with children and youth with special health care needs (CYSCHN) is represented.
Doreen Hodges, Executive Director of Family Voices of DC and the DC F2F HIC, recently taped a 2 minute TV commercial to be aired around the time of the inauguration. She sought—and received—input through the FV-Talk network. Her statement, in addition to raising awareness about the work of Family Voices and the F2F HICs, focused on what “change” means to families of children with special health care needs. In Doreen’s words:
“CHANGE means WE families, ALL of us, regardless of the color of our skin, race, spoken language, economic status, and being born in or arriving without documentation in the US, having HOPE that we will not be shunned, but treated with respect, listened to with EQUAL access, on all levels and in every state, to a health care system - regardless of whether it is public or private insurance - to meet the needs of our children…ALL children.”
In North Carolina, the Exceptional Children’s Assistance Center, home to the NC F2F HIC, recently called a town meeting-style “Health Care Initiative Forum.” They invited interested parents and professional partners to discuss health care reform and to draft a report to send to the new administration. Twenty-six attendees discussed the state of health care today in North Carolina, and the complex issues and obstacles that must be overcome in order to “fix” its problems. They noted especially that the current health care system structure, combined with high cost, and limited access helped create the problems—and to perpetuate them.
In Utah, Gina Pola-Money, of the Utah Family-to-Family Health Information, Education, and Support Center, gathered information from families across the state and provided comments and feedback about the needs of Utah’s CYSHCN to state and federal elected officials.
There are obviously a multitude of ways to ensure that the needs of CYSCHN are adequately considered in the new administration’s health care reform discussions. How input is provided is less important than making sure the input is given. We know New Jersey and other states have held events in their communities. What have you or your organization or F2F HIC done to let the Obama team know your concerns and suggestions? This is a critical time to raise family voices all across the country as changes in health care systems are debated. Send us your stories!
Building a Strong Partnership: Indiana’s ASK, Inc, and MDwise, Inc.
F2F HICs have a tradition of building strong partnerships with other organizations. Such is the case with Indiana’s About Special Kids, Inc. (ASK) program. In what began in 2002 as a pilot program and is now a formal agreement, ASK is partnering with MDwise, Inc, a nonprofit managed care organization (MCO), currently managing Indiana’s Medicaid program for low income families and people with disabilities.
MDwise identifies children with special needs and refers them to ASK to help identify appropriate resources. More special needs children are being served and MDwise case managers are discovering resources they didn’t know existed. ASK counselors, as parents of children with special needs, speak from experience. Says Karla Harmon, LPN, MDwise Hoosier Alliance,
“Whenever I have a child that seems to be just lost in the system, and their family or the social workers at the hospital are just not sure what to do, I have found that ASK has always been able to help . . . [and] you made the difference in the quality of life that the special kids in our state have. Thank you, Nancy [Stone, Project Manager, ASK] and the ASK team for everything that you do and for being a resource for us to refer to when it seems as though our hands are tied.”
ASK recently submitted an abstract to AMCHP, and will be presenting a session on this partnership at the upcoming AMCHP Annual Conference to help other states replicate this program—and its successes.
There are many ways to celebrate families and support the Family Voices Gala!
MAKE YOUR PLANS TO ATTEND! RSVP BY FEBRUARY 13.
Join us in honoring Peters Willson, former VP for Public Policy with the National Association of Children’s Hospitals and Related Institutions (NACHRI) and the Fialka-Feldman family, social justice advocates for inclusion, parent/professional partnerships, and disability rights and pride. Mark Trombino, a TV, film, and voice actor whose motto is “embrace difference, don’t hide from it!” will serve as the evening’s emcee.
Tickets are available on the Family Voices website: $300 per individual, $150 discounted price for Family Voices and AMCHP members, or $2,500 per table (seating of 10).
Help support this important event:
FAMILY & FRIEND DEDICATIONS ($50 MINIMUM) - Send in a photo of a loved one and a 1-line message to be included in a special section of the Gala Program Book. DEADLINE IS FEBRUARY 6
TABLE SPONSORSHIP - ADVERTISEMENT PURCHASE (ADS FROM $175 - $1,000; TABLES are $2,500 FOR 10 SEATS) - The table can be named after your family or loved one, and the ad can carry any message you’d like. DEADLINE IS FEBRUARY 6 FOR ADS; FEBRUARY 13 FOR TABLES
CREATE A “FRIENDS OF” GROUP (ANY AMOUNT): Ask family and friends to donate to Family Voices in honor of your loved one. DEADLINE IS FEBRUARY 6
This just-released report highlights the accomplishments of family and youth leaders, Family-to-Family Health Information Centers, the National Center for Family/Professional Partnerships and offers an overview of Family Voices’ financial position for fiscal year 2007-08. Download a copy of the Annual Report or order hard copies through our online catalog or by calling Adelita Martinez at (888) 835-5669
This delightful 12-month calendar features heartwarming photographs of members and friends of the Family Voices family, inspirational quotes, and space to keep track of your important dates. Please visit our online catalog to order your copies today!
Mark Your New Family Voices Calendar with the Family Voices National Conference! May 3 – 5, 2009, in Washington DC. This year’s theme: “Looking Forward: Keeping Families at the Center of Children’s Health Care.” Look for more details on the conference in upcoming issues of Friday’s Child. MCHB Family-to-Family and Integrated Services Grantee meetings will follow May 5 – 6, 2009.
The latest edition of the Family Voices’ electronic newsletter, Bright Futures: Family Matters, is available online at the Bright Futures for Families website. . The theme of this issue is “Social, Emotional & Mental Well-Being.” Check out this issue to learn some great tips to help you understand your child.
Originally featured in the November 2008 edition of Friday’s Child, these newly-published Family-Centered Care Self-Assessment Tools are designed as an opportunity for health care practices and families to assess current areas of strength and identify areas for growth, plan future efforts, and track progress toward family-centered care. These tools include a Family Tool, a Provider Tool, and a Users Guide. An online feedback survey will soon be available for you to give input to help us to continue to improve these tools. For more information, please visit the FV website.
Be sure to check out the this short brief summarizing data and activities from F2F HICs for the period June 2007 – May 2008. You may download it from the Family Voices website or order multiple copies from the online catalog
United Health Care Children’s Foundation Medical Assistance Grants
The United Health Care Children’s Foundation offers parents and caretakers up to $5000 in grants to help cover medical services to improve the health and quality of life of their children. These grants can be used for such services as speech therapy, physical therapy, and psychotherapy sessions; medical equipment such as wheelchairs, braces, hearing aids, and glasses; and orthodontia and dental treatments.
Children up to age 16 and living in any of the 50 states are eligible for a grant. Families must meet economic guidelines, live in the US, and be covered by a commercial health plan. Visit the United Healthcare’s website for more information.
CDC “Learn the Signs. Act Early” Campaign
Parents often assess their child’s development by physical milestones, such as sitting independently, or taking first steps. A new campaign by the Centers for Disease Control (CDC), “Learn the Signs. Act Early,” encourages parents to look for social milestones, such as smiling, making eye contact, and playing with others. Delays in these markers might be an early sign of a development problem such as autism. Check out the website, which you can access from the Family Voices website or directly on the CDC website.
Family Health History Resources
Does your family have its health history compiled in a useful and accessible format? Such a history is not only valuable during times of crisis, but also as a general aid for ongoing health care. The following resources can help you prepare this important document for your family:
Replicating Connecticut’s “Help Me Grow” Program—A Call for Proposals
As often is the case, a new program is developed that works well and has the potential to be useful in broader ways. Such is the case for Connecticut Children’s Trust Fund “Help Me Grow” program, which includes four interrelated core components: care coordination, resource inventory, data collection, and early detection/early intervention for children at risk for developmental and behavioral programs. Two additional states will be eligible for technical assistance on how to replicate this project through a grant from the Commonwealth Fund.
For complete details, see the Call for Proposal located on the Connecticut Children’s Medical Center website. Note the deadline for application is January 26, 2009.
California’s CSHCN Newsletter
California’s CaCSHCNews is a great example of how to pack a lot of useful information about one state’s CSHCN programs into an attractive newsletter format. The newsletter is produced by a consortium of organizations, including Family Voices of California. To read the December 2009 issue, go to their website. You’ll find other helpful resources there as well.
MCH Library Knowledge Path: Racial and Ethnic Disparities in Health
This new Maternal and Child Health Library Knowledge Path has a multitude of resources that examine racial and ethnic disparities, including a chartbook from the Commonwealth Fund report, links to websites, articles, data and more.
Robert Wood Johnson Foundation Publishes Two New Reports
Check out these two new reports from the Robert Wood Johnson Foundation:
