Help Navigating the Medical Field

A couple of websites have been brought to my attention that are resources for families with children with many medical needs. I'll put the sites on the link list but thought I'd also highlight them here.

Family Voices

http://www.familyvoices.org/projects?id=0002 

Our Mission

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.

OUR VISION

Every child and youth with special needs receives family-centered care.

OUR PRINCIPLES

• 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.

National Center for Family/Professional Partnerships

http://www.fv-ncfpp.org/

What is family-centered care?

Health care visits for children youth and their families can be more than getting shots, having ears examined or getting treatment for the physical symptoms of an illness.  During visits and in all forms of communication, families, youth and health care providers who build effective and trusting partnerships based on an understanding and respect for the needs of the family and child/youth create family-centered care. Such strong partnerships ensure that a child/youth receives the highest quality of health care. See a definition of family-centered care, below.

Definition of Family-Centered Care

Family-Centered Care assures the health and well-being of children and their families through a respectful family-professional partnership. It honors the strengths, cultures, traditions and expertise that everyone brings to this relationship. Family-Centered Care is the standard of practice which results in high quality services.

Principles of Family-Centered Care for Children

The foundation of family-centered care is the partnership between families and professionals. Key to this partnership are the following principles:

• 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.

Based on this partnership, family-centered care:

1. Acknowledges the family as the constant in a child’s life.
2.  Builds on family strengths.
3. Supports the child in learning about and participating in his/her care and decision-making.
4. Honors cultural diversity and family traditions.
5. Recognizes the importance of community-based services.
6.  Promotes an individual and developmental approach.
7.  Encourages family-to-family and peer support.
8. Supports youth as they transition to adulthood.
9. Develops policies, practices, and systems that are family-friendly and family-centered in all settings.
10. Celebrates successes.