July 3, 2009
For Nannie Marie Sanchez- “Keep your dreams. Dreams make a difference. You can make dreams come true”— are words she lives by as she makes her mark in the world. Born with Down syndrome to a sixteen-year-old mother convinced by physicians that Nannie would never talk, walk, or to do much for herself, especially as an adult, her biological mother gave her up for adoption to a loving family who was willing to ensure Nannie’s success in life.
Nannie attended public school and higher educational systems “that both helped me succeed and threatened to kill my spirit.” While most teachers sought to challenge her, others were less encouraging. “I’ve had teachers who have told me that I can’t do things,” she says. “But that’s not true; it just takes me more time. They laughed at me in high school and said, ‘‘Nannie can’t do this, Nannie can’t do that.’” Nannie rose above all that and has succeeded in many ways:
Nannie constantly seeks new challenges and opportunities. She takes pride in who she is and what she has to offer. She doesn’t say “I can’t,” but rather, “how can I do this?”” The impact and inspiration of her advocacy work ripples through the state and the nation.
As of June 1, 2009, F2F HICs will be operational in every state and the District of Columbia. F2F HICs assist families of children and youth with special health care needs/disabilities (CYSHCN) with support, information, resources, and training. Family Voices, Inc., as the National Center for Family / Professional Partnerships (NCFPP), provides technical assistance to support these activities. MCHB recently awarded a new 4-year cooperative agreement to Family Voices to continue to provide technical assistance to the F2F HICs throughout the country.
OKLAHOMA: Finding Opportunities To Partner Professional Knowledge With Family Wisdom
The Oklahoma Family Network (OFN) provides another example of statewide efforts encouraging family and professional partnerships. Joni Bruce, OFN Executive Director, described the OFN Council: “The relationship has matured over time. Last year, the family members sat on one side of the room and the professionals on the other. This year, you can’t tell the difference between them.” They have gotten to know each other—and value their respective contributions.
In 2007, Betsy Anderson and Barbara Popper visited the OFN to provide Family Voices Technical Assistance, and the idea for a statewide conference was developed. The second Joining Forces: Supporting Family and Professional Partnerships Conference was recently held in April.
More than a dozen organizations and government offices from the Down Syndrome Association of Central Oklahoma to the Oklahoma State Department of Health pitched in with everything from food to mileage reimbursement for participants. The conference’s top priority was to provide skill building for effective partnerships. Added Joni, “It was amazing to me for the agencies to admit that they need help.”
Mentors are key. “We identify family leaders who can mentor others and teach basics like how to dress and act, and then help find positions for them.” Conference attendees are asked to identify committees or groups that would benefit from family participation, as well as needed skills or experience.
OFN’s efforts are working. Family voices are being heard, respected, and requested, all in an effort to improve the health and well-being of Oklahoma’s children.
For more information about the Oklahoma Family Network, go to their website.
Family-to-Family Health Information Centers (F2F HICs)
Since the last update, much has happened in the world of health care reform. While there are still many details to be filled in, the five committees of jurisdiction in the House and Senate – the Senate Committee on Health, Education, Labor & Pensions (HELP); Senate Finance Committee; and three House Committees–have all issued either bills or outlines of proposed bills. The FV Policy Team is working to ensure that children with special health care needs (CSHCN) are considered as this legislation is developed.
In a June 18 Family Voices letter, Family Voices expressed support for the bill developed by Senator Edward Kennedy (D-MA), Chairman of the HELP Committee. The letter praises provisions of the bill, including those that would: eliminate pre-existing condition exclusions, benefit caps, and premium disparities based on disability; expand Medicaid eligibility; make insurance more affordable; and establish community-based “navigator” entities to help consumers select the best insurance plans for their families. The letter urges the committee to specifically support the role of F2F HICs to ensure that families of CSHCN obtain needed assistance in securing benefits for their children.
In addition, FV joined a number of other national organizations in signing on to a letter to Chairman Kennedy and Ranking Member Michael Enzi (R-WY) expressing support preserving state mandated health benefits, and for improvements to the proposed “Medical Advisory Council,” which would be responsible for developing a federal benefits package under the Kennedy bill.
Health Care Reform
Comprehensive information about health care reform can be found on the website of the Kaiser Family Foundation. (See especially Explaining the Basics of Health Care Reform and Side-by-Side Comparison of Major Health Care Reform Proposals.)
If you have any questions about these or other federal issues, please feel free to contact the Public Policy Team -- Brooke Lehmann and Janis Guerney.
New Medical Home Website
The Center for Medical Home Improvement (CMHI) has a new website, , whose purpose is to “spread awareness of the importance of a medical home, develop supports for primary care physicians to implement a medical home, and align state and national efforts toward the implementation of medical homes everywhere.”
New Medical Home Toolkit
The AAP/MCHB/National Center for Medical Home Implementation has developed a new “Building Your Medical Home Toolkit” to help practices assess and improve medical home capacity. The toolkit is organized around care partnership support, clinical care organization, care delivery management, resources and linkages, practice performance measurement, and payment and finance. To view the toolkit, visit their website.
Medical Home Teleconference
The fifth teleconference in the AAP’s Medical Home Implementation Series, “Incorporating Family Participation Practices into Your Practice and Project,” has been rescheduled for July (date TBA). Family Voices Board of Director Renee Turchi, MD, MPH, FAAP, will be one of the featured speakers. Visit their website for more information.
MCH Knowledge Path Update
This latest Knowledge Path update provides resources for screening, diagnosis, treatment and intervention, communication, vocational challenges, and impact on early life of the autism spectrum disorders. Besure to check out the complete listing of these informative Knowledge Paths.
2020 Objectives
Listen in on July 10, 2009 to the Open Internet Meeting of the Secretary’s Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2020. There will be no opportunity for oral public comments during this meeting, but written comments are welcome throughout the development process.
Health Disparities report
One of the challenges of health care reform is ensuring that all segments of the population have equal access to quality care. In a new report, HHS Secretary Kathleen Sebelius discusses health disparity issues including higher rates of disease, reduced access to care, and lack of routine care and prevention options for low-income Americans and racial and ethnic minorities.
Understanding Health Care Policy Debate
For information and resources to help understand the health care policy debate, check out the Commonwealth Fund’s informative website.
Coaching Youth and Families to Move Forward in Health Care Transition—One Small Step at a Time
Transition in health care may seem like an overwhelming challenge for youth with special health care needs and their families. Think about taking small steps toward transition:
These are six steps to begin health care transition. Pick ONE today. Before you know it, the child or youth will be well on the way toward transition in health care.
Join the next Healthy and Ready to Work (HRTW) Topical Call on “Ticket to Work: Roles for Public Health and Health Care Providers,” July 15, 2009, from 3-4pm EDT. Visit the HRTW website for more information.
