Family Voices putting families at the center of children s health care

2. Family Voices� putting families at the center of children�s health care aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities supports a national network of family leaders in every state including 41 funded Family-to-Family Health Information Centers provides families with tools to make informed decisions, encourages self advocacy/empowerment in youth/young people with disabilities advocates for improved public and private policies, builds partnerships among families and professionals serves as a trusted resource on health care

3. A definition of families�. big, small, extended, nuclear, multigenerational, with one parent, two parents, and grandparents a culture unto itself, with different values and unique ways of realizing its dreams families create neighborhoods, communities, states and nations

4. Partnerships drive changes in health care: 60s and 70s � families partnering with professionals, push for state and federal special education laws; deinstitutionalization; expanded visiting hours in hospitals 80s - Essential Maternal and Child Health Bureau leadership promotes the critical role of families in the healthcare of their children � OBRA �89 82 Katie Beckett Home and Community Based waivers bring children home 90�s MCHB and AAP create, pilot ideas regarding �Medical Home� with family professional partnerships at the core

5. Family � Professional Partnerships today Families and professionals work together in the best interests of the child and 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

6. Partnerships build on family strengths: Professionals hear what works and doesn�t work for a family/youth � care not carried out will never work

7. Partnerships are built on trust: Trust builds over time through honesty and a shared understanding of the family/youth/provider mutual responsibility Families know what to expect from the provider Providers know what to expect of the family

8. Partnerships rely on effective communication Item most frequently requested by families is access to more information Mutual information is routinely shared and informs decision making Families� unique knowledge is incorporated in to decisions about care Families receive information in forms and ways they can use Care schedules honor family needs when possible

9. Communication strategies

10. Partnerships mean shared decision making Stark change from approach of �medical model� Families expect professionals to be experts in medicine and willing to seek additional expertise when needed Providers expect families to share full information, their comfort in decision making, who they want on decision making team Youth are included early/ aligned with cultural values New skills learned by families/youth/professionals; encouragement by professionals helps families/child/youth to grow in decision making roles

11. Shared decision making Helpful to acknowledge: Usually more than one way to achieve good outcomes For some decisions good alternatives may be lacking Discussion of feedback and backup options needed

12. Criteria for measuring decision making success Providers encourage active role of family in decision making. Families are given information they need to participate meaningfully in shared decision making. Shared decision making discussions actually take place. Shared decision making discussions include consideration of risks, benefits, costs (time and money), feasibility of following decisions and navigating barriers, preferences, etc. Families feel comfortable with decisions made.

13. Partnerships honor cultural values, beliefs, practices Inquiries about and responses to care needs respect family beliefs Written principles honoring cultural diversity are evident

14. Community Resources and Family to Family Support Most care for children/youth now occurs in communities Referrals to family support groups, child-care services, therapies, recreation, respite, financial assistance, education, etc. are of critical importance; these services are documented and coordinated in care plans

15. Partnerships include feedback at many levels Direct feedback through surveys, focus groups, individual questions identifies areas for improvement Ongoing feedback loops through advisory committees, groups provide improvement at program and policy level Adapted designs in offices/clinics/hospitals; low/no-cost procedure changes, patient safety feedback = increased satisfaction, improved care and outcomes

16. Better health outcomes Wiser allocation of resources Greater family and patient satisfaction Effective family/professional partnerships lead to:

17. Keep our Eyes on the Prize