Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
Throughout our national grassroots network, we provide families resources and support to make informed decisions, advocate for improved public and private policies, build partnerships among families and professionals, and serve as a trusted resource on health care.
Every child and youth with special needs receives family-centered care.
OUR CHILDREN and YOUTH
It is estimated that 10.2 million children in the United States have special health care needs. Like other children and youth, those with special health care needs deserve a happy, healthy childhood and youth – attending school, enjoying community events, living with their families, and worshiping with friends and neighbors – as well as the opportunity to become productive adults.
However, unlike other children and youth, ours also have challenging health conditions – physical, mental, or emotional – that can make their lives and their families’ lives more complicated. Any child or youth at any time could develop a disability or chronic health condition.
- Family-centered care. Because families are at the center of a child's life, they must be equal partners in decision-making and all aspects of the child's care. Family-centered care is community-based, coordinated, culturally and linguistically competent, and guided by what is best for each child and family.
- Partnerships. Family-centered care is based upon strong and effective family-professional relationships built within the context of families' and professionals' cultural values and practices to improve decision-making, enhance outcomes, and assure quality.
- Quality, access, affordability and acceptability. Children with special needs deserve primary and specialty health care that is of high quality, affordable, within geographic reach and respectful of family and community culture.
- Health systems that work for families and children. Health policies and systems built on a foundation of family-centered, culturally and linguistically competent care must be the standard for all children.
- Informed families/strong communities. Like their peers, children with special needs deserve every opportunity to enjoy a happy and healthy childhood at home in their communities. Families equipped with reliable, accurate information about ways to support their child's health, education and social development will help them grow into productive adults as defined by their personal, family and community cultural beliefs and values.
- Self-advocacy/empowerment. When informed and supported, young people with disabilities can make choices and advocate for themselves.
Over the next four years (2012-2015), Family Voices will focus on the following strategic directions in our work to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
- Direction #1: Infrastructure – Family Voices will have a dynamic and effective structure based on a strong network of family-led organizations.
- Direction #2: Policy – Family Voices’ advocacy positions will be disseminated widely, and all state organizations will meet a minimum level of competency in advocacy/policy.
- Direction #3: Diversity/Cultural Competence - Family Voices’ leadership will both reflect and serve – to a high level of satisfaction – our diverse constituency.
- Direction #4: Funding - Family Voices will be financially healthy and stable.