Family Participation

Families of children with special health care needs will partner in decision-making at all levels and will be satisfied with the services they receive.

Families are the constants in the child's life and are pivotal in making any system work. Family members, including those representative of the culturally diverse communities served, must have a meaningful, enduring, and leading role in the development of systems at all levels of policy, programs, and practice. Family voices must be heard, and families should be at each table where decision are made. Thus, the involvement of families is a key indicator of systems development.

Family Voices, as the National Center for Family Professional Partnerships, collaborates with family leaders, Family-to-Family Health Information Centers, State Title V Children with Special Health Care Needs Programs and other partners such as the Association of Maternal and Child Health Programs to strengthen and broaden the support for family/professional partnerships.

The National Center for Cultural Competence promotes the integration of culturally competent values, practices and policies into existing service systems to address issues related to quality, access, and disparities.


About Partnerships

A partnership is a relationship between individuals or groups that is characterized by mutual cooperation and responsibility for the achievement of a specified goal.  Partnerships have been used as successful models in many disciplines.  In health care, evidence has shown that strong doctor-patient relationships improve patient and family health outcomes2.  Key to such partnerships are the following principles3:

  • Families and professionals work together in the best interest of the child and the family. As the child grows, s/he assumes a partnership role.
  • Everyone respects the skills and expertise brought to the relationship.
  • Trust is acknowledged as fundamental.
  • Communication and information sharing are open and objective.
  • Participants make decisions together.
  • There is a willingness to negotiate.


Partnership Roles

Partnering with your child's provider: As your child's most consistent caregiver, you know your child with special health care needs in ways that no one else can, and you have the most vested interest in ensuring that your child's health care needs are met. Your perspective on when something is wrong or how a treatment or medication is working is essential to the providers who treat your child.  Communication is critical to developing a partnership with your child's provider. To learn more about working with your child's provider, please read Families Partnering with Providers.

Partnering with managed care plans: The financing of health care for most children with special health care needs is provided by managed care plans, which by definition, control access to services and programs.  Just as you do with your child's provider, you can help managed care plans to understand what works well and what doesn't with their programs and policies.  Many managed care plans work with family advisors to learn more about the populations they serve.  To learn more about working with your child's health plan, please read Parent's Partnering with Managed Care Plans.

Partnering with Title V: Federal health care programs such as Medicaid are administered by state Title V departments and partnership roles for families are often included in these programs to ensure the family perspective. Families in these roles are critical to helping our government understand our needs in caring for our children with special health care needs. Please click here to learn more about working with Title V.

Partnering with other family leaders: In advocating for their child, many parents have learned the importance and value of speaking out for larger systems change.  Advocacy groups, whether disability-specific or broader (such as Family Voices), arose because a few individuals wanted a better life for their child and believed they could make a difference.  By joining your voice with others, your message is stronger.  To learn more about working with other family leaders, please read Guidelines for Organizing or visit Family Voices in the States.

  1. Maternal and Child Health Bureau: Achieving and Measuring Success: A National Agenda for Children with Special Health Care Needs
  2. American Academy of Pediatrics, Committee on Hospital Care: Policy statement:  Family-Centered Care and the Pediatrician's Role Pediatrics, Vol. 112, No. 3, September 2003
  3. Maternal and Child Health Bureau: Family-Centered Care