Family Partnerships

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Family Partnerships

• Kathy Allely
• Karen Martinek

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Marges Story

• Or
• What I learned sitting in a middle seat
• the very last seat on a plane ride home.

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The (very) abridged version

• Brian, 10 years old, diagnosed five years ago
  with Muscular Dystrophy.
• Pediatrician very uncomfortable making referral
  and diagnosis, even though everyone knew
  something was really wrong with Brian.
• Diagnosis made at our State-Sponsored Genetics
  Clinic.

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The (very) abridged version (continued)

• Very satisfied with clinical evaluation.
• Spent many many months trying blindly, often
  unsuccessfully to make the connections to get
  the services support that Brian needed.

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The Happy Ending

• Marge made the connections to the Developmental
  Disabilities system, TEFRA, Special Ed, MDA, etc.
• Her family really enjoyed their Make-A-Wish trip
  to Disneyworld.
• When asked if she would be interested in making a
  difference for other families with special needs
  children..YES!!

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The Happy Ending (continued)

• Marge now sits on the Advisory Committee for our
  Genetics Planning Project and will have a strong
  hand in shaping the future of policy and genetics
  service delivery in Alaska.

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Moral to the Story

• Life adjusting to Brians serious diagnosis
  would have been so much easier if only someone
  had given Marge some of the phone numbers and
  contacts that it took her almost a year to find.

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Without Family Partnership

• Professionals develop the system
• Families experience the system
• Decisions are made for families that might
  otherwise be made by themselves affects
  familys finances, ability to work, where to
  live, grocery shopping, social activities,
  friends, etc.

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How do we shift CSHCN Program Activities to
nurture family partnerships, invite families to
be decision-makers and insure that they are
satisfied with services?
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Emerging Leaders

• Families dont always think of themselves as
  leaders
• Leadership qualities often develop as families
  attempt to obtain services
• Requires investment from families and
  professionals

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Families Offer . . .

• Awareness of the whole system
• Stories that illustrate how the system does and
  doesnt work

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Partnership Roles for Families

• Task force membership
• Paid program staff
• Grant reviewer 
• Reviewed written materials
• Participated in focus group (SCHIP) 
• Interview committee for staff positions  

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Partnership Roles for Families

• Conferences, meetings, advisory committees
• Available to provide parent perspective -
• Testify at the legislature on behalf of CSHCN
• Speak to University students
• Present at conferences

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How to recognize a leader

• Families know that relationships are what make
  things work for their child
• Families participate on many levels in the care
  of their child from advocacy to day-to-day,
  hour-to-hour care
• Integrity we should all have it!
• Passion

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How do we shift CSHCN Program Activities to
nurture.? (continued)

• Set the standard.
• Be Aware Be aware of turf issues resistance.
• Invite critics staff or others to be part of
  the solution.
• Make use of family stories (people) to help train
  staff.
• Change is hard keep trying.

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How Do We Get Families to Partner in CSHCN
Program Policy Services?

• Seek input/participation from parents family
  leaders.
• ICC/EIC (Early Intervention Committee)
• Family-Family Support Groups (Stone Soup Group)
• Grass roots parent advocacy groups (Family
  Voices)
• Get families to the table. Feed nurture them.

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How Do We Get Families to Partner in CSHCN
Program Policy Services?

• Go where families are
• Clinics, programs services
• Conferences
• Public Forums
• Join Listserves
• Volunteer
• Involve respect the diversity among us.

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How Do We Get Professionals to Partner in CSHCN
Program Policy Services?

• Region X Mission Possible
• Family initiated, planned, and directed 4-state
  conference on policies and practices related to
  CSHCN similar to Tri-Regional conferences
• The system, as families experience it, was the
  basis for the conference.

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Mission Possible Results

• Changes at state level in partnering
• On-going initiatives and involvement in
  activities
• Model for other regions, and the Bureau

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The Power of a Story

• Family stories give parents a comfortable
  starting point.
• Family stories bring policies, problems,
  successes to life for legislators,
  decision-makers, and bureaucrats
• Can bring about real change

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How do we really know if families are satisfied
with services?

• Ask.
• Find ways to solicit feedback measure important
  elements of your program services.
• Referrals in out
• Access
• Quality
• Information sharing / communication
• Follow-up
• Transitions

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How do we really know if families are satisfied
with services? (continued)

• Really use what you learn to make things better
  for families.
• Let families know that their feedback is valued
  can make a difference.
• If families have nothing to say, its probably a
  very bad sign.

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The Cleft Lip Palate Parent Navigation Story
Heres how it is.
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The CL/P Parent Navigation Story (continued)

• State has sponsored multi-disciplinary clinics
  with volunteer providers for many years.
• Anchorage clinics now held at the Alaska Native
  Medical Center Dental Clinic.
• Approximately 30 families scheduled. Most from
  Anchorage. Stampede Start.

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The CL/P Parent Navigation Story (continued)

• Family has approximately 10 minutes for exam with
  each provider (ENT, pedodontist, orthodontist,
  plastic surgeon, etc.) who rotate through the
  dental unit where child family sit.
• Little introduction or orientation to clinic flow
  or process for new or returning families.

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The CL/P Parent Navigation Story (continued)
.

• No exit opportunity for family to ask
  questions, verify follow-up recommendations, etc.
• Families never participate in staffing or
  compilation of clinic report or follow-up
  recommendations.
• Reports sent to families their designated
  providers weeks after clinic.

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The CL/P StorySome things to think about

• Great service done to families with little or
  no input from them.
• If we have to do something different at clinics,
  we must be doing something wrong now.
• Are families partners, decision makers really
  satisfied with the services they receive?

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The CL/P StoryRolling Up Our Sleeves

• Shadow and participate in clinic experience
  with families. Listen to their stories, feedback
  and ideas.
• Collaborate with expert partners, parents,
  family-to-family support organizations and Indian
  Health Services to identify needs and explore
  options.
• Involve clinic staff in the exploration of needs
  options for enhancements.

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The CL/P StoryThe Happy Ending Were Working
Towards

• Scope of work and procurement underway for a
  family support agency to do needs assessment,
  provide on site parent navigation services during
  clinics and evaluate family satisfaction with the
  services they receive.

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The CL/P StoryThe Happy Ending (continued)

• Families will become more active partners
  decision makers in the services they receive.
• Family support agency staff parents - will be
  paid for their expertise services to families.
• We will build a better service system together!

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The CL/P StoryThe Happy Ending (continued)

• Collaborative partnership between Title V / CSHCN
  program family support agency enhanced.
• Family support agency receives some sustainable
  ongoing financial support.

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Reframing Family Roles

• Families are leaders
• Families set direction
• Families get results
• Families participate, build relationships, have
  integrity
• Families influence others
• Families bring others along

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Challenges

• Unwilling partners (staff, agencies)
• Finding families
• Ensuring diversity
• Fair Compensation

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Lessons Learned

• Give families opportunities to tell their
  stories. Sometimes stories come to us in the
  most unlikely places.
• Listening means keeping our ears (and hearts)
  open our mouths closed.
• Not all good ideas cost a lot in terms of dollars
  or resources.

Change can occur at glacial speeds