Volume 07 | May 3, 2019 View as Webpage
CMC CoIIN Monthly Update
Welcome to the April Issue!
 
In order to support each state team and promote cross-team sharing, we include timely and relevant topics, tips, and news to assist you in developing, implementing, and evaluating meaningful QI projects to advance care for children with medical complexity and their families.
CMC CoIIN Deadlines & Updates
Important Dates and Events
Tuesday, May 7 th
CMC CoIIN State Team Webinar #9
12:30PM – 2:00PM EST
Topic: TBA

Friday, July 12 th
CMC CoIIN State Team Webinar #10
2:00PM – 3:30PM EST
Topic: TBA

Wednesday, November 6 th
CMC CoIIN State Team Webinar #11
2:00PM – 3:30PM EST
Topic: TBA

September 16 th -18 th
State Team In-person Meeting
Chicago AAP Headquarters
Mon: 4:00pm-7:00pm CDT
Tues: 8:30am-4:30pm CDT
Wed: 8:30am-2:00pm CDT
Family Engagement:
Activities by State Teams and Resources
Here we have state team's April updates for family engagement. State teams share their successes and their family engagement activities from their monthly updates. We hope to foster ideas and cross-sharing in this fundamental area. Additionally, we have compiled family engagement resources for your reference and use. Feel free to talk to your coach or reach out to individual state teams if anything here grabs you.

PLEASE NOTE:  Project members can view all state team updates on our shared workspace under  Box/State Team Cross-sharing/"State Team Monthly Updates Summary Tables".
Family Leaders Spotlight: Team TX Administration of QI Surveys

This month, the Texas state team of the CMC CoIIN began to administer their quantitative survey. They have chosen not to do so electronically and instead have trained family leaders from the CoIIN workgroup to administer the surveys. This short article will give you a brief overview of the process, training and a glimpse at some results thus far.
 
A grant from the Texas Title V CSHCN program enables payment of time for parents administering the survey. Thus far, 3 family leaders from the Texas CoIIN family workgroup have been trained and at least two additional are lined up for next month. Additionally, with the influx of new members to the work group, Sherry Santa of Texas P2P, intends to conduct the training for all workgroup participants in May. There is at least one family leader who can conduct the survey in Spanish; with the goal of recruiting at least one more. The training is an hour long and addresses the following topics: grief (comparing Dr. Kubler-Ross linear theory of grief and Ken Moses), Stages of Adaptation, active listening, People First language and an orientation to resources (and how to provide to families). Links to materials used in the training are in Box .
 
Thus far, Texas has completed 12 surveys. On average, the surveys were completed in 34.58 minutes. The survey is emailed ahead of time to families who wish to review it prior to the interview. Family leaders read a script prior to asking question in which they carefully instruct that specific comments or questions about their child, they need to share that with the clinic directly. The interviewers capture and record narrative in two ways:

1) Enter the “additional comments” follow up sections into QIDA and
2) Family leaders are also making notes in the margins of the survey instrument recording consistent comments of participants. For example, in question #37 that asks about amount of time providing direct medical care to your child, several participants (over half of those surveyed thus far) indicated “24/7,” “every day , all day” and similar statements” to the interviewer. 

The Texas team is also being responsive to adaptations that need to be made in administration of the survey. For example, although families are trained to offer resources and connect participants to resources at the end of the survey, this does not seem to flow as naturally as expected. So, while the interviewers will continue to be trained to make this offer and connections, Texas will test whether the email follow up to survey completion and stipend information will be a better vehicle to offer connection to resources and a family-led organization such as Texas P2P and Family Voices.
 
Texas is excited and encouraged by the results, process and experience. Of note is that the survey does not appear to be longer or excessive in light of the oral administration. Additionally, while families are providing invaluable narrative to accompany the quantitative measures, the family leaders are able to listen, record valuable data and make connections. It is already apparent that families are thrilled to participate and also need to talk and connect to other families.
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:
  1. Assist in new personnel interviews, as requested.
  2. Orientation role for care coordinators
  3. Do Gemba walks at each of the three practices to get intro to the practices. Participate in team meeting and patient visit.
  4. 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
  5. Collect initial empowerment scales of participants and facilitate initial meetings in each practice
  6. Help COIIN with focus group planning and delivery at state level
  7. Participate in COIIN projects and including separate family calls Possible add-ons
  8. Consider options to help with family survey data collection
  9. 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.
  10. Family support for families in cohort
  11. 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:
  1. 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.
  2. 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.
  3. 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.
CMC CoIIN State Team Corner
CMC CoIIN Project Presentations

Members of the CMC CoIIN project have participated in conferences and interest groups that highlight the importance of family engagement activities and discuss children with medical complexities’ enrollment in medical homes with a shared plan of care. We have compiled the presentation materials and some action photos for your reference in   Box (Note: password required) . If you would like to see more CMC CoIIN products, please let us know! 
The teams from Boston University, Oregon and Texas had a successful CMC CoIIN-related trip to San Antonio, TX for the AMCHP Conference! It was great to see so many of you there! W atch videos of the presentations and download slides for your reference. (See instructions at the link for how to access using the AMCHP app)
Special Event from MN State Team :
 
Thursday, June 20 th
In-Person Conference: Transforming Care and Experience for Children
9:00AM – 5:30PM CDT
317 on Rice Park Event Center
St. Paul, Minnesota

The World of CMC
A collection of resources and events related to family engagement, youth with special healthcare needs, and other relevant topics. 
Wednesday, May 8 from 2-2:30 pm PST
Mental health services and supports for children with special health care needs (CSHCN) must be a priority for California. This briefing will provide an overview of the mental health services to which CSHCN are entitled, highlight current state policy priorities and share ways to engage in advocacy efforts. Speakers will be available after the briefing for questions. Register here

Not Just Along For The Ride: Families Are The Engine That Drives Pediatric Home Health Care Cara Coleman from Family Voices gives insight on how families of children and youth with special health care needs and disabilities play a key role in home- and community-based services for their children. Cara's blog offers a meaningful perspective on how families are not passive observers in pediatric health care, but active participants in the system. Read more

The recent report from the Massachusetts Medical Society and other leading organizations address the condition of physician burnout - a condition where physicians loose satisfaction and a sense of efficacy in their work. Better mental healthcare for clinicians is necessary—and starts with team-wide readiness for the emotional toll of difficult situations. Read more

Narrative Matters: My Child is Sick; Don’t Call Her A “Consumer” The mother of a chronically ill child discusses why the terminology and goals of health care consumerism won’t resonate with all patients. Read more
Monthly Inspiration

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CoIIN to Advance Care for Children with Medical Complexity | Center for Innovation in Social Work and Health | Boston University School of Social Work | 302-329-9261 | mcomeau@bu.edu|