The Association of Maternal & Child Health Programs has a long history of collaborating with families and consumers to ensure programs that support them at the state and federal level, consider their needs in the planning and delivery of programs and services, employ or train their staff to be culturally and linguistically competent, and measure outcomes that are meaningful. Through the AMCHP Family & Youth Leadership Committee, training for families that work with state Title V programs has developed and grown, enriching state programs along the way and building a cadre of committed advocates for Title V programs and funding. [more]
One of the most rewarding aspects of my travels across the country is the chance to visit with family leaders to talk about interactions with their state Title V program (and vice versa) -- did you know some of you truly are "rock stars" in the eyes of your colleagues from both the parent and professional perspective? While feedback on family involvement activities varies widely depending on the state program I am visiting, almost every Title V program has a formal connection with family leaders in their state. [more]
By Angela Miney
University of Florida
University of Washington
Margaret Murphy, a mom and a World Health Organization Patient Safety Champion, whose son Kevin died in 1999 as a result of a series of medical errors, tells the medical community that "you ignore a mother's instincts at your peril!" Too often, health-care providers have come to appreciate the value of patient and family involvement after a tragic event, but patient and family-centered care need not be built on the bricks of tragedy and grief. The six national Pediatric Pulmonary Centers (PPCs), funded by the Maternal and Child Health Bureau (MCHB), have embraced patient and family involvement at local, institutional, state, regional and national levels. The family partners from the Universities of Florida (UF) and Washington (UW) share their stories. [more]
Family-to-Family Health Information Centers: Connecting Families and Professionals to Resources
By Diana L. Denboba
Branch Chief, Maternal and Child Health Bureau
The Family-to-Family Health Information Centers (F2Fs) grant program was originally established for the Health Resources and Services Administration Maternal and Child Health Bureau by the Family Opportunity Act as a part of the Budget Deficit Reduction Act of 2005 (P.L. 109-171). Since 2006, 51 centers have been funded. The Patient Protection and Affordable Care Act of 2010extended F2F funding through fiscal year 2012. This initiative supports grants that ensures families of children (and youth) with special healthcare needs (CSHCN) participate in decision making at all levels and are satisfied with the services they receive by providing peer support to families, and providing information, training, and technical assistance, to families and the professionals who serve them.[more]
REAL LIFE STORIES
Family Involvement in Maternal and Child Health
By Rylin Rodgers
Training Director, Family Leadership Coordinator, Riley Child Development Center and Board of Directors, Family Voices Indiana
When I first entered the maternal and child health (MCH) world, I struggled to find some simple language to describe to my children and others what I was doing when I went out. At that point, I was not going to work, these were all volunteer efforts. They were also very diverse. I was going to committee meetings, conducting or receiving training, giving testimony or helping other families. The descriptor I settled on was that I was "off to save the world." That frame may appear a bit ambitious but, for me, it was broad enough to include the wide range of my activities and to satisfy my children as to why I was leaving them to do what I was. I was going to impact systems to make things better for the families who were coming after ours. [more]
Family Leadership: AMCHP Family Scholar Program
By Heather Milliren
Skagit County and NW Washington Coordinator for Washington State Parent to Parent, 2008 AMCHP Family Scholar and 2010-11 AMCHP Family Mentor
As the parent of three young children, two of whom have special health care needs, family leadership is second nature for me. Advocating for my family in medical and education/community arenas is a necessity. Utilizing the skills gained through these advocacy experiences and a passion for serving other families in similar situations launched me into a second career. Prior to starting a family, I worked as an elementary school teacher. Once my first child was born and subsequently diagnosed with a severe-to-profound hearing loss, my career path changed course. [more]
Being a Family Leader at AMCHP
By Michelle Jarvis
Program Manager for Family Involvement, AMCHP
Me -- a leader? No way. I was the girl who lacked self-confidence and was shy. The one who worried what everyone else thought. The one who couldn’t stand up in a small class of my friends to give a book report in school. Leadership had nothing to do with me. Or so I thought.
Although I didn’t know it at the time, my journey as a family leader started when my son was born in 1999. Shortly before his third birthday, he was diagnosed with autism. [more]
MEMBER TO MEMBER
Member states were asked the following question:How is your state engaging the AMCHP Family Delegate for your state?
Learn what Massachusetts, Michigan and Minnesota are doing to get Family delegates involved in MCH programs. [more]
The Brand Called SPAN: The Statewide Parent Advocacy Network
By Jennifer Bolden Pitre, M.A. J.D.
Director of Integrated Systems, SPAN
At its core, the Statewide Parent Advocacy Network (SPAN), is a movement for parent leadership across systems. With a diverse staff at all levels, SPAN serves the full diversity of New Jersey families. The SPAN leadership team includes AMCHP Family Scholars and a current MCH LEAD & LEND Fellow. [more]
Family Involvement in the Wisconsin Title V Program
By Amy Whitehead
Statewide CYSHCN Coordinator, Wisconsin Department of Health Services, Division of Public Health, Wisconsin Family Delegate, and AMCHP Family & Youth Leadership Committee Chair
Infrastructure for the Wisconsin Title V Children and Youth with Special Health Care Needs (CYSHCN) Program is designed as a Collaborators Network, which includes Regional Resource Centers, Parent to Parent, Family Voices and statewide projects addressing national performance measures. To maximize family-centeredness and family professional partnerships, family involvement is woven throughout the network. Family leaders are hired because of their professional skills, systems expertise and life experience. [more]
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