Other National Partners

Administration on Developmental Disabilities
U.S. Government organization responsible for implementation of the Developmental Disabilities Assistance and Bill of Rights Act of 2000, known as the DD Act. NCFPP Partnership Activities: Participated in EPICS project meeting regarding needs of  Native American families; participated in planning committee of Family Support stakeholders and agency strategic planning

Agency for Health Research and Quality (AHRQ)
AHRQ's mission is to improve the quality, safety, efficiency, and effectiveness of health care for all Americans. As 1 of 12 agencies within the Department of Health and Human Services, AHRQ supports research that helps people make more informed decisions and improves the quality of health care services. NCFPP Partnership Activities: The NCFPP has reviewed AHRQ materials and provided guidance on opportunities for family leadership involvement.

American Academy of Pediatrics (AAP)
An organization of 60,000 pediatricians committed to the attainment of optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults. NCFPP Partnership Activities: NCFPP participates on the Medical Home Implementation Advisory Committee, the Council on Children with Disabilities Committee and the FamilY Partnerships Network (capital Y in FamilY represents Youth/Young Adults) to share the family perspective, news about F2F HICs, and materials.

Association of Maternal and Child Health Programs (AMCHP)
A national resource, partner and advocate for state public health leaders and others working to improve the health of women, children, youth and families, including those with special health care needs. Family Voices & NCFPP Partnership Activities: Family Voices and AMCHP partnered in 2010 to share conference and gala activities.  Family Voices participates on the Workforce Development Initiatives and has a seat on the the Family and Youth Leadership Committee as well as work to support family leadership development.

Center for Medical Home Improvement
The mission of the Center for Medical Home Improvement (CMHI) is to establish and support networks of parent/professional teams to improve the quality of primary care medical homes for children and youth with special health care needs and their families. NCFPP Partnership Activities: The NCFPP participates on their advisory group to review and advice on newly developed "consensus standards" for comprehensive integrated care planning/care plans.

Consumers United for Evidence Based Healthcare (CUE)
CUE is a national coalition of health and consumer advocacy organizations committed to empowering consumers to make the best use of evidence-based healthcare (EBHC). CUE, organized in 2003 when the USCC invited advocacy groups to join a consumer advocate-scientist partnership, is a pioneering effort to improve consumers’ ability to engage in and demand high quality healthcare.  NCFPP Partnership Activities: NCFPP has provided consumer input and participated in conference.

Genetic Alliance
Genetic Alliance is a nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. NCFPP Partnership Activities: The NCFPP collected tools and resources from their vast combined networks of parents, parent advocacy groups, disease-specific advocacy groups, disability groups, and other partners to create the Advocacy ATLAS toolkit. The toolkit provides individuals with special healthcare needs and their families with tools and strategies to advocate for what they need. Resources are grouped by category on the Advocacy ATLAS landing page. Families shared personal stories about advocacy to be included on the site. Archived webinars can be viewed to learn more about the Advocacy ATLAS and to hear stories from self-advocates and families about their unique advocacy experiences. More information.

Maternal & Child Health Public Health Leadership Institute (MCH-PHLI)
This was a 4-year initiative to lead an executive-education program designed to significantly expand self-awareness and quickly build practical skills for effectively leading, managing people, and building partnerships, to advocate for and create the MCH systems of tomorrow; designed to  improve leadership capacity and teaching how to create  an organizational culture that engages and motivates others. NCFPP Partnership Activities: The NCFPP participated in this four year initiative by advocating for family leaders to be included, participating in the planning process and selecting and supporting family fellows. Five family leaders from across the country, for each of the 4 years, participated in this yearlong institute.

National Academy for State Health Policy (NASHP)
NASHP is an independent academy of state health policymakers working together to identify emerging issues, develop policy solutions, and improve state health policy and practice. NCFPP Partnership Activities: The NCFPP Co-sponsored a teleconference on early childhood health and has served on Workgroup Advisory Committee for project on Recommendations to District of Columbia on Improving Child Health Quality through HIT and Quality Measurement

National Association of Children's Hospitals and Related Institutions (NACHRI)
NACHRI represents not-for-profit organizations of children's hospitals, large pediatric units of medical centers and related health systems, including those that specialize in rehabilitative care of children with serious chronic or congenital illnesses. They serve as a voice for health systems devoted to the well-being of America's 70 million children and their families and work to ensure children's access to health care and the continuing ability of children's hospitals to provide services needed by children. NCFPP Partnership Activities: Ongoing discussions about joint activities

National Institute  for Children's Health Quality (NICHQ)
NICHQ is an independent, not-for-profit, quality improvement organization dedicated to achieving a world in which all children receive the high quality healthcare they need. Family Voices Partnership Activities: The NCFPP participates on Advisory Board and Sickle Cell project. NCFPP is partnering to offer a 6 webinar course on quality improvement.  Each year for 3 years, parent led teams of family leaders and professional partners, have the opportunity to participate in the ABCs of Quality Improvement course. Participants work as a team to carry out a pre-identified quality improvement project over the duration of the course. 

Parent to Parent, USA (P2P USA)
P2P programs offer parent to parent support providing emotional and informational support to families of children who have special needs most notably by matching parents seeking support with an experienced, trained 'Support Parent'. FV/NCFPPPartnership Activities: NCFPP staff partnered jointly with the Genetic Alliance to create an online advocacy toolkit. Under a new initiative P2P and  FV are partnering with Quality Trust on supported decision making to provide an important grassroots family perspective to create solutions that promote alternatives to guardianship.

White House Offices on Disability Policy and Public Engagement
NCFPP Partnership Activities:
The NCFPP disseminates the White House Newsletter for Young Americans and conference calls seeking input from youth on various topics, including specific outreach to rural and Native American youth and young adults

 

ATLAS.jpg

Advocacy Atlas . . . Accessible Tools for Leadership and Advocacy, a project of Genetic Alliance in partnership with Parent to Parent USA and Family Voices

LineOfHearts.jpg

Understanding Evidence-Based Healthcare: A Foundation for Action

Take this free course, Understanding Evidence-Based Healthcare: A Foundation for Action,  designed to help consumer advocates understand the fundamentals of evidence-based healthcare concepts and skills.  Sponsored by a project of Consumers United for Evidence-based Healthcare (CUE).

LineOfHearts.jpg

AMCHPFamilyScholars.jpg

Learn More about the AMCHP Family Scholars Program.