REGION 9 Family Leader Meeting

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Agenda Item III
Families as Partners What weve learned - Why
it matters
The Patient-Centered Medical Home as
Facilitator of Care Patient Centered Primary
Care Stakeholders Meeting Washington, DC July
16, 2008
Nora Wells nwells_at_familyvoices.org
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Family Voices putting families at the center of
childrens 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

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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

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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
• 90s MCHB and AAP create, pilot ideas regarding
  Medical Home with family professional
  partnerships at the core

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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

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Partnerships build on family strengths

• Recognize that the family is the constant in a
  childs life the most important caretaker
• Recognize that family perspective is critical to
  safe successful health care
• Incorporate family strengths into care plans
  families/youth learn to advocate for themselves

• Professionals hear what works and doesnt work
  for a family/youth care not carried out will
  never work

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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

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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

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Communication strategies

• Pre-visit questionnaires, questions during visits
  
• Care notebooks to track information
• Encounter forms after each visit
• Shared reports from specialty appointments
• Shared medical records
• Written care plans with goals

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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

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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

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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.

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Partnerships honor cultural values, beliefs,
practices

• Inquiries about and responses to care needs
  respect family beliefs
• Written principles honoring cultural diversity
  are evident

• Self assessments monitor progress
• Capacities are adapted to meet needs of
  communities linguistically and culturally

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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

• Links to peer support are provided
• Multiple provision models are possible for
  example care coordinator within care setting
  referral/relationships with family organizations

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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

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Effective family/professional partnerships lead
to

• Better health outcomes
• Wiser allocation of resources
• Greater family and patient satisfaction

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Keep our Eyes on the Prize
For more information contact Nora
Wells Director, Family Voices National Center for
Family/Professional Partnerships nwells_at_familyvoic
es.org www.familyvoices.org