State by State Family Engagement Activities
COLORADO STATE TEAM
Currently working with family leaders to prepare for the July family focus group, recruit families, design support visit agenda.
INDIANA STATE TEAM
Each of the family representatives presented about their organizations (About Special Kids and Family Voices Indiana) on the calls this month to give the pilot practices and other team members an in-depth look of what services are available to the family through them. This is extremely helpful to the practices as we begin to look at what the process of referral outside of the clinics will look like.
KENTUCKY STATE TEAM
The Family to Family representative is involved on the calls. She also participates in the follow-up to confirm the parent has all resources available to him/her. We want to ensure all resources are maximized.
MASSACHUSETTS STATE TEAM
Sarah Perkins went to the Family Voices meeting. PDSA with an enrolled family.
MINNESOTA STATE TEAM
Parents are integral members of the clinic QI team. Attend bi-monthly meetings; their input and viewpoint is very much appreciated by non-parent members of the team.
OREGON STATE TEAM
BranDee Trejo and Tamara Bakewell participated in a systems alignment workshop sponsored by a large, local CCO. The purpose of this event was to bring “family navigators” (loosely defined) together to talk about how to align, or reduce the number of, care coordinators for CYSHCN and at-risk young children. BranDee and Tamara worked with a group of 10 family navigators to identify an “ideal” process for supporting a medically complex infant coming home from the hospital.
We noted the following:
- None of the other participants were aware of what is involved with a discharge of this nature.
- None were aware of the need for medical equipment vendors in the home, for example, or the disconnect between a pre-discharge planning meeting and the arrival at home and connection to community supports.
- One participant, a family leader from a large disability support group, openly disagreed with our recommendation for care coordination post-discharge. She felt strongly that the medical community should not have that kind of authority to direct activities at home and that the family should receive that support from peers.
BranDee and Tamara felt the meeting was eye-opening, and learned how little “family navigators,” both peer and professional, understand about the care coordination needs of medially complex children. Our recommendation was that CCO Exceptional Needs Care Coordinators, working closely with hospital discharge planners, could be extremely helpful in bridging the care gap when children return home. Specifically, they could help “untangle” the complexities Oregon families have of receiving Medicaid-funded services through two large systems: DHS and OHA. Tamara (team lead) and BranDee also have participated in implementation team meetings with clinical staff as we develop our improvement project. Additionally, Tamara is working with an Occupational Therapist from the OHSU CDRC Transition Clinic on a tip sheet/tracking tool for parents to using as they begin the health care transfer.
TEXAS STATE TEAM
Family work group continues to review progress so far - especially as it relates to survey issues. Preparations to complete assessment of current state - and finalize design of 'future state'.
WASHINGTON STATE TEAM
- 3 family navigators expanding the scope of family navigation and data collection
- Continued refinement of family support
- Participation in the national family workgroup to represent the WA State unique cohort
- Planning for July support visit and parent focus groups
WISCONSIN STATE TEAM
Family leaders participated in the team meetings. Holly Owens co-led the training for our staff, talking about her own experiences and lessons learned using the CLTS waiver to help care for her daughter. She shared that it can be hard to accept that you need help, because no parent wants to do anything that might make providers think they can't care for their child. She explained that it helped to reframe it as using waiver money to pay for things that helped meet her daughter's goals, like being able to go swimming. She also gave tips that she learned about working with different waiver workers to explain the complex needs of her CMC daughter, when workers made suggestions not appropriate for her needs. Following up on the meeting, Holly wrote an introduction letter to be included in folders of waiver information given to families. Three members of our team, Holly Owens, Barbara Katz, and Jane Lee, have been part of the group working on focus group planning. We all look forward to the insight gained from the family focus groups.
