Family Engagement Activities by State
ALABAMA STATE TEAM
From Susan Colburn: Activities this month included work to put procedures in place to be able to reimburse families for their time spent working on our CMC CoIIN project. This has involved meetings with ADRS Accounting Division as well as the CRS Assistant Commissioner to develop an agreement with Family Voices of Alabama. This will give us the ability to reimburse members of the CMC Family Council for their time spent on meetings or helping us with the Quality Measures survey, as well as offering a $25 Walmart gift card to any family who completes the survey. Work has also begun on customizing the recruitment flyer to share with families who may be interested in taking the survey.
COLORADO STATE TEAM
Family leaders were asked to review & provide feedback on the BU flyer. Family leaders are participating in the March/April family focus groups. Ellen and Angie reached out to Advisory Team Family and Youth representatives to help test the REDcap survey and receive feedback about the process and time for completing the survey. Family leader present at March Core team planning meeting.
INDIANA STATE TEAM
The family representatives met with one another to give thought on how they can be best utilized in addition the current work they are doing. A meeting has been scheduled for April 15 to discuss the current state and expansion of activities for our family representatives and once the pilot is up and running. This list includes and along with some budgeting issues that may arise due to additional activities:
- Assist in new personnel interviews, as requested.
- Orientation role for care coordinators
- Do Gemba walks at each of the three practices to get intro to the practices. Participate in team meeting and patient visit.
- Provide family advisory council tools; introduction of family advisory council plan to the practice; and set principles or parameters at practice level for outcomes they want from family advisory help
- Collect initial empowerment scales of participants and facilitate initial meetings in each practice
- Help COIIN with focus group planning and delivery at state level
- Participate in COIIN projects and including separate family calls Possible add-ons
- Consider options to help with family survey data collection
- Consider options to help with family support service to families in the cohorts Budgeting issues such as: family stipends for family councils and travel mileage for Gemba walks at practices.
- Family support for families in cohort
- Work on REDcap data entry with families who need help.
KENTUCKY STATE TEAM
Family participation in VCTC. One main issue coming from the conferences is the need of school and waiver assistance. Therefore F2F is getting involved to help the families.
MASSACHUSETTS STATE TEAM
Elizabeth reached out to several families who are currently inpatient to get their thoughts and opinions on the Get to Know Me and Shared Surgical Care Plan. She received great feedback on ways to improve the forms. She also was able to talk with a family who has had hip surgery and learn more about their experiences.
MINNESOTA STATE TEAM
No changes.
OREGON STATE TEAM
Ana, BranDee, Tami, and Alison prepared for and presented on the process for conducting the Family Input portion of our team’s environmental scan work at AMCHP’s annual conference in San Antonio, TX. This was Ana and BranDee’s first time presenting at a national conference and they were amazing! They received their own round of applause. Ana and BranDee’s families adjusted their schedules to support both Family Representatives attending the entire conference. One of their post-presentation/conference reflections was “I actually feel very empowered. I don’t think I realized how much parent participation really means to these projects.” Ana and BranDee worked with our evaluation team staff member to pretest the CoIIN family survey. They provided superb feedback that our evaluation team will incorporate, along with the feedback from two to three additional parents of young adults with medical complexity, into a report for the national CoIIN team.
TEXAS STATE TEAM
The Family work-group has been active in preparing for the survey. Working through the logistics of the survey process ; Pilot testing the survey; Recruiting more parents into the work group.
WASHINGTON STATE TEAM
In March 2019 the Family Engagement consisted of: The virtual family support group project will be utilizing Zoom as a platform to offer virtual parent support in the following ways:
- Relationship and Connection - When a parent has received a diagnosis that greatly impacts their child and family, knowing that you are not alone can be a lifeline. Building a virtual community will offer social supports.
- Education Opportunities - By offering families virtual webinars, they are able to access education and information that will support their child, self or family that they wouldn't otherwise be able to glean because of location and/or circumstance.
- Rural Communities - Creating and maintaining a virtual community via Zoom will provide parents in rural communities the opportunity for support that they may not otherwise access due to geographic limitations. This may help families feel less isolated and feel supported in their journey.
The project is in process of obtaining a HIPPA compliant Zoom platform via UW. The family navigator who is facilitating the group has received the paperwork, sent it in and is currently waiting to hear back from UW HR about next steps. New family navigator with lived experience added to the team to bring the family navigators bolster the parent outreach for these young families. There is also part time administrative support to help the navigators with resource building. The stipend system has been fine tuned to ensure that the stipends are to families in a timely manner and there is tracking for the three stipend opportunities for each family. Bi-monthly team meetings have been set to keep the family navigators from 3 different geographical locations working in sync and still be able to do their own separate bodies of work around enrollment, additional family navigation, data collection and support projects. This time also allows for strategizing around enrollment since this is a targeted population with unique needs. March was the month where enrollment was ramped up and the infrastructure and processes around enrolling families has been tested and refined.
WISCONSIN STATE TEAM
We have 3 team members who are going to be part of the work group on family quality of life and other outcomes, Holly Owens (parent representative), Barbara Katz (Family Voices of WI), and Jane Lee (physician at CHW). They report that the first meeting will be held soon and will update the rest of the group on our next phone call. One parent representative has stepped down due to lack of time to participate. We will be recruiting a replacement, and discussed what will be needed for orientation for the new parent, to bring them up to speed on the group's work and help them feel comfortable contributing. Holly's comments about her participation: I’ve been welcome to attend any meetings scheduled including the twice a month sessions we have. I’ve been forwarded or included in all emails and was invited to be a part of the work group for quality of life. I have always had the option of joining the group at CHW for the calls or calling in from home whatever was best for each meeting.
