Nora Wells, Family Voices Executive Director, Recipient of 2015 Merle McPherson Leadership Award
I am Rylin Rodgers, the Training Director and Family Leadership Coordinator for Indiana's LEND the Riley Child Development Center and a director of Family Voice Indiana. I served as the Co Chair of the 2014 AMCHP Family and Youth Leadership Committee.
I am delighted this afternoon to present the Merle McPherson Leadership Award. The award is named for Dr. Merle McPherson, who served as director of the Maternal and Child Health Bureau's Division of Services for Children with Special Health Needs from 1987-2006.
Dr. McPherson left a legacy of leadership and vision for how to create a new model of family-centered health care delivery for children and youth with special health care needs.
It is my understanding that Dr. McPherson may be in attendance - if you are with us, Dr. McPherson, please stand and be recognized for your great accomplishments.
The award is given annually to family professionals who have made exemplary contributions to further family/professional collaboration.
This year's award goes to Nora Wells, Executive Director of Family Voices.
For over three decades, Nora has been a national leader in engaging families in decision and policy-making to ensure access to quality services for children with special health care needs. She has devoted herself to advocating for family-centered care and family/ professional partnerships, long before these terms were widely known.
Nora is a family leader who exemplifies Dr. McPherson's legacy and vision for family-centered health care delivery, for children and youth with special health care needs. As the parent of a son with cerebral palsy who required multiple hospitalizations, Nora lived the challenges of caring for a CYSHCN walking the road of families navigating the maze of health care systems.
From beginnings as a parent advocate, Nora quickly learned the significance of policy issues and immersed herself in meeting the needs of all CYSHCN and their families. In those early years, she was instrumental in effecting hospital policies for family visiting hours and permitting families to stay with their child.
Nora's experience and zeal was well-matched with others who together formed Family Voices. When Family Voices was awarded funding as the Family Voices National Center for Family/Professional Partnerships (NCFPP) in 2004, Nora was named the Director, giving her avenues to expand the model of family-centered care for all children. Through her visionary leadership, support and technical assistance to the Family-to-Family Health Information Centers, Nora has helped build a national family voices presence throughout the country, impacting multiple state, local and national policies. Resulting in the inclusion of families at all levels of decision making.
Nora is treasured by family leaders across the country as a mentor. Nora's personal and professional experience, her patience, and her unselfishness make her an incomparable source of support for others, "Nora has provided valuable guidance and direction and is committed to developing future leaders."
Nora's efforts around partnership in the MCH arena have allowed her to work closely with families, Title V services and federal officials. She worked with researchers, practitioners, family advocates, and policy makers on the National Survey of Children with Special Health Care Needs (NS-CSHCN) to learn more about the health and functional status of CSHCN, along with families' access to quality health care, coordination of services, medical home, transition services for youth, and the impact of chronic conditions on the child's family. Nora played a key role in helping to develop the NS-CSHCN, interpret the results, and develop practical ways family leaders could access and use the data.
Nora has served as Chair of the Family Voices Committee on Access and Quality of Care, which until recently included Merle McPherson. The Committee works to increase access and quality of care for CYSHCN and under Nora's invigorating leadership, the Committee has ensured that the concepts of Medical Home, Family Centered Care, and Cultural Competence are integrated throughout all of Family Voices work.
Nora is regarded as a national content leader, briefing members of Congress on family-centered health care, as well as authoring numerous publications.
Thousands of families and professionals across the country have learned from Nora how to make a difference in the lives of CYSHCN.
AMCHP, is so happy to recognize Nora Wells' outstanding and tireless service on behalf of CYSHCN and their families. Nora, congratulations!
Family -Professional Partnerships - where we've been and where we're going
I am deeply honored to be receiving this award, but realize that I am standing here not as an individual, but as a representative of a movement - a movement built on the belief that the way to improve health outcomes for all people is through commitment to the principles of family-centered care and the family/professional partnerships that are its core.
I want to start by thanking some of the true heroes who are here with us today, who began this movement within the Maternal and Child Health Bureau – first Dr. Merle McPherson, in recognition of whom this award is given. Merle has had a profound effect on all of our MCH work, though her vision and accomplishments around family-centered care and community based systems of service; also Diana Denboba, who led the creation of Family-to-Family Health Information Centers as the MCHB Integrated Services Branch Chief. A little later you will hear about the accomplishments of award recipient Bonnie Strickland, who led the MCHB Division of Children and Youth with Special Health Needs through implementation of the 6 core outcomes and the National Surveys around Children’s Health and award winner Cassie Lauver, retiring Director of State and Community Health, who encouraged the roles of families as Block Grant reviewers and integral partners in the development of Block Grants.
Also, I want to thank and recognize the amazing group of family leaders who are participating in this AMCHP Conference. Well over 45 as I understand it. They are all here to share their expertise and wisdom from the field. Will all of you here who are participating as family leaders please stand so that we can recognize you for your partnership in our critical work.
I’d like to take a few minutes now to think with you of where we have been, where we are, and how we can build our common future together.
I think it was Yogi Berra who said “If you don’t know where you are going, you are likely to end up somewhere else!”
When our first son was born in 1972, fathers waited in a waiting room for news of the birth; when our baby needed hospital care, we waited in waiting rooms, limited to visits at the approval of providers. Treatment for our son’s special needs took place in a tertiary care hospital - our community pediatrician had no role and made no comment on his care.
By the middle of the 1970s, things began to change. Families worked with educators to pass new special education laws, laws which gave parents a voice to participate in decisions about their child’s education. Ten years later, federal legislation provided permanent funding for family-led organizations to educate families to be partners with professionals in education.
Health care was changing in modest ways too such as Patients’ Bills of Rights and new hospital visiting policies.
By the 1980s, the Maternal and Child Health Bureau began to take a leading role in defining and creating new concepts in health care for mothers, children and families. Visionary leaders Dr. Vince Hutchins, Dr. Merle McPherson, and Kathleen Bishop at MCHB, providers Dr. Cal Sia in Hawaii and Dr. Tom Tonniges at the American Academy of Pediatrics began to define a new concept of “Medical Home.” MCHB invited families to help define children with special needs, medical home, family-centered care, a community based system of services and 6 core outcomes. MCH leaders articulated and acted on their belief in the importance of partnering with families who were experiencing services in order to reform and improve the services. Families of children with special needs, already actively engaged in changes around special education, hospital policies and tech dependent children, were readily available to help.
MCH took their commitment to partnership with families seriously. They began to fund family run projects, encouraged all of their grantees to partner with families, engaged families in grant reviews, in planning, presenting at and sponsoring meetings, in creating strategic plans and products, in evaluation of State Block Grant applications. They encouraged state Title V Programs to engage with and hire families in multiple roles.
To assist them in this work, MCH supported the development of Family Voices, a cross disability national network organization, and Family Voices successfully pushed for funding to develop state level family organizations who could help family members partner around health care; since 2005 MCH has administered Family-to-Family Health Information Center grants in 51 states and the District of Columbia. Through their creation, millions of individual families have been assisted to partner with providers and new and diverse families from many communities have been nurtured to take leadership roles throughout the country.
AMCHP has taken an active role in activating and promoting family-professional partnerships as well. Families have been invited to be “family scholars” at AMCHP conferences, have been given training and mentoring support, have developed the AMCHP Family Youth Leadership Committee and have been given roles on the AMCHP Board of Directors and as Family Delegates from states.
MCHB has now been a thought leader for more than 30 years around the concepts of family-centered care and family professional partnership that are today accepted as essential to cost effectiveness and quality improvement across health care systems and public health programs.
The partnership strategies that MCH has honed in partnering with families of children with special needs are equally essential and readily transferable to all MCH populations and programs. In fact these engagement strategies are already being used in some Title V Programs. Family-to-Family Health Information Centers are one group helping that to happened, for example in training providers on effective communication approaches for low income pregnant women, public education campaigns, peer support in nutrition programs, research projects, life course initiatives and many other areas.
Where do we go from here? How can we better implement, enhance, support and expand the effective partnerships between our public health work and the populations this work is intended to benefit? Family-to-Family Health Information Centers are ready and willing to help to spread effective models of family engagement to best serve other MCH populations including those from diverse socio-economic and cultural backgrounds. To do this, however we must find sustained funding for their work. As one state family leader said to me today…. We know how to do this, we just need the time and money to do it.
Our sear Yogi Berra tells us that “the future ain’t what it used to be.” Ask yourself what is needed in the future if MCH is truly going to “move the needle” in improving health outcomes for women, children, youth and families.
I urge you each to build on the vision and wisdom that families and MCH have already developed together and apply these lessons to engaging families as true partners from all the communities that you serve. These experiences are a critical foundation to promoting the important roles of MCH in the implementation of health care transformation taking place under ACA.
As MCH leaders, both professionals and families, you can build on the lessons learned from MCH’s history of experience with family professional partnership. Use this wisdom to help you engage families from all of your programs as you design and carry out the new MCH Transformation and quality improvement efforts.
Embrace and take steps to implement the fundamental concept that is the focus of this award. Partnering with those who are beneficiaries of our initiatives/work is a guaranteed way to ensure that our work will be valid and effective. Keep this at the core of all of your work. Together, we have the expertise needed. Let’s find the resources. State Title V Programs, Family-to-Family Health Information Centers and other family leaders around the country, Family Voices and other family organizations, AMCHP and MCHB, let’s work together to accomplish this essential challenge.