Volume 05 | February 22, 2019 View as Webpage
CMC CoIIN State Teams
Monthly e-Newsletter
WELCOME to the January/February Issue!

In order to support each state team and promote cross-team sharing, we will cull 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.

TABLE OF CONTENTS
 1. Family Engagement Spotlight
a)   A Framework for Assessing Family Engagement in Systems Change (FESAT) – Ready for Pilot Testing, by Cara Coleman, Family Voices National
b)   CMC CoIIN Family Engagement Strategies to be Highlighted for Cross-CoIIN Workshop at AMCHP 2019
c)   Family Engagement: Salient Resources & Articles
  • Asking Difficult Questions: Quality of Life and End of Life Conversations (by Cara Coleman)
  • The Five Strategies for Engaging Family Partners
  • Five Top Tips for Engaging Families in Advisory Roles: Advice from a Family Leader
 
2. What's New?: Relevant updates on every aspect of the CMC CoIIN
a)    Measurement Matters:
  • QIDA Training Webinars
  • QIDA Pilot Testing Pre- and Post-Launch 
  • CMC CoIIN 01/22/19 Webinar #6: Follow Up Notes
b)    QI Tools You Can Use:
  • CMC CoIIN Resources from Improvement Partners Based on State Team Requests
c) National Advisory Committee
  • CMC CoIIN National Advisory Committee Members are here to help!
 
3. State Team Spotlight
a) State Team Spotlight on Success
  • Team TX has MAJOR Success with Innovative Payment Method Approved by Medicaid Partner
  • Oregon’s Fishbone Diagram: a Deeper Dive into Root Causes
  • Great Ideas You can Use: Colorado State Team’s Monthly Advisory Team Newsletter
  • CMC CoIIN Teams Present Workshops and Poster Sessions at AMCHP 2019 Conference
b) New State Team Cross-sharing Items Posted to Box
c) January Family Engagement Activities by State
 
4. FAQs
  • Consenting
  • New CMC CoIIN website design
  • QIDA access levels
 
5.  In Others News...

6.   CMC CoIIN Notable Dates and Deadlines - 2019

7. Give Us Feedback
  
PLEASE NOTE:
Here you will see "teasers" under each topic area outlined above.
Click "Read More" under any topic to link directly to a companion online document containing the full e-newsletter.
Thoughts? Click the " Give Us Feedback" button at the end!
Family Engagement Spotlight
A Framework for Assessing Family Engagement in Systems Change (FESAT) – Ready for Pilot Testing

by Cara Coleman, Family Voices National
CMC CoIIN Family Engagement Strategies to be Highlighted for Cross-CoIIN Workshop at AMCHP 2019
Asking Difficult Questions:
Quality of Life and End of Life Conversations
This article by our own Cara Coleman was featured in the 2019 Exception Parent-Physician-Patient-People (EP) Guide: Navigating Special Needs Resources. It includes both a poignant, down-to-earth and refreshingly honest approach to the topic, as well as a host of tangible resources, not just for end of life, but for quality of life for CMC and their families.

Five Top Tips for Engaging Families in Advisory Roles: Advice from a Family Leader

Teresa Jurado, a parent mentor at Lucile Packard Children’s Hospital Stanford and former chair of a family advisory committee for the Health Plan of San Mateo California Children’s Services Family Sub-Committee, recently shared her   five top tips  for meaningfully engaging a group of family advisors.
The Five Strategies for Engaging Family Partners

System improvement cannot take place without the involvement of families. The National Institute for Children’s Health Quality suggests five essentials for developing meaningful family partnerships.
Does your team have innovative ideas, tools and/or strategies for family engagement that you would like to see featured in future issues?
Click the “Give Us Feedback” button below.
What's New?
Relevant updates
on every aspect of the CMC CoIIN
Measurement Matters


CMC CoIIN 01/22/19 Webinar #6: Follow Up Notes
Thanks to all who were able to take part in the 6th webinar to date, entitled “ Almost there! Consenting, Data Collection Details, and Cross-sharing for Recruitment .
 
If you missed it, you can find the recording, chat transcript and slides on Box/CMC CoIIN State Team Materials/State Team Webinars & QI Tools/State Team Webinar #6.
 
PLEASE NOTE – the consent process discussed on this webinar has recently changed; see Section 4 FAQs for more details.
 
These materials are publicly available on the project website at https://ciswh.org/coiin-webinars/
QI Tools You Can Use
CMC CoIIN Resources from Improvement Partners Based on State Team Requests

by Kerri Deloso, IP Coach
In response to asks from State Teams, we've created a few resources you may want to check out:

* Tips for Recruitment (located on Box here ): These tips were created based on State Team discussion during the January 2019 State Team Webinar.

* Tips for Selling Your Project to Partners (located on Box here ): These tips were created based on what we've seen work amongst state teams and other projects.

**We would love for you to get in on the discussion! If you have any other tips, lessons learned, or examples you would like to share about what works for recruiting kids and families or pitching your projects to potential partners, send your thoughts to Kerri at kdeloso@improvepartners.org , and she will distribute any additions or questions back to the larger group!**
National Advisory Committee
CMC CoIIN National Advisory Committee Members are here to help!
by Christina Boothby, Program Manager
American Academy of Pediatrics
As part of the CMC CoIIN, state teams have access to nationally-recognized experts who are knowledgeable in the areas most pertinent to children with medical complexity, their families, and the systems where they receive care. CMC CoIIN staff recently developed an expertise “menu” that lists all National Advisory Committee (NAC) members and their areas of expertise.
 
National Advisory Committee members are here to assist and support to state teams in many different ways, including the following:
  • Participating in calls with state teams to provide to guidance on a NAC member’s area of expertise
  • Serve as faculty on state team monthly webinars
  • Assist in identifying new and innovative topics and strategies related to the project
  • Assist in identifying resources, relevant policy, and/or the latest published research related to improving care for children with medical complexity
  • Contribute to writing newsletter articles that may be of interest to state teams
  • Travel on technical assistance site visits to support state teams in their work

Is your team interested in connecting with a NAC member on a specific topic area? Email Bethlyn at bvergo@bu.edu and staff will determine the best way for NAC members to support you in your efforts.
S tate Team Corner
The latest and greatest from you for you!
Here, we feature state team successes they wish to share, and each state team's family engagement activities from their monthly updates. We hope to foster ideas and cross-sharing in this fundamental area. 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".
STATE TEAM SPOTLIGHT ON SUCCESS

Team TX has MAJOR Success:
Innovative Payment Model Approved by Medicaid Partner
As reported by Ivy Goldstein

Team Texas has wonderful news – the Texas Health and Human Services Commission (our Medicaid partner) has approved the delegation of service coordination from our two managed care partners to our clinic site. 
 
This is a significant accomplishment that will transform service delivery for the children at the clinic in the STAR Kids managed care program. We are all elated and also, grateful for the opportunity the CoIIN has provided to do this important work.
  


Oregon’s Fishbone Diagram: a Deeper Dive into Root Causes
As reported by Alison Martin & Tamara Bakewell  

Use of the fishbone diagram provided us with a framework for delving deeper into the problem; often issues that appeared to be people problems were systems problems, such as problems with payment structures. Understanding this root cause is essential for sustainability. That is, any change efforts that we attempt at a clinic level are unlikely to be sustained or spread if the payment system cannot change to support transition coordination payments ...


To learn more about how Team Oregon used the fishbone diagram to help them further focus their project, click here .

 
Great Ideas to You can Use:
Colorado State Team’s Monthly Advisory Team Newsletter

Looking for a way to engage key stakeholders to keep them informed and engaged? The Colorado State Team has created a newsletter that informs their advisory team of their project updates, any conferences or meetings that would be useful to their members, and overall relevant information for advancing care for CMC. Thanks to Angie Goodger and Ellen Sublett from Team CO for sharing!

To see the newsletter, click here


CMC CoIIN Teams Present Workshops and Poster Sessions at AMCHP 2019 Conference

The Oregon State Team and Texas State Team will be presenting at the Association of Maternal & Child Health Programs conference this year. Oregon State Team’s workshop will be taking place on March 11, 11:00AM – 12:00PM; Texas State Team’s poster presentation will be held on March 10, 1:00PM – 2:00PM ( view program ) ...


Click here for Oregon's abstract

Click here for Texas' abstract
NEW State Team Cross-sharing Resources Posted to Box

Thanks to all the State Teams who have been contributing to the Cross-Sharing folder on Box! See below for a list of 9 new materials that were shared this month: 
  • Recruitment Brochures (Family Brochure and Physician Brochure): Brochures created by Team Kentucky to recruit families and providers for their Virtual Care Team Conferences. They will be adding billing info to the provider brochure in the future. (location on Box: State Team Cross Sharing > Recruitment)
  • Tips for Recruitment: This document was developed based on the State Team discussion at the January 2019 webinar ...

Family Engagement Activities by State – Highlights from January's project update summaries

ALABAMA STATE TEAM
We have a family leader on the Alabama team. Sharon Henderson and Tammy Moore are parents of a child with medical complexity and members of the Alabama team. We also have a youth consultant, Sarah Williams on our team. Susan Colburn is also a member of the CMC CoIIN Family Engagement Workgroup ...

FAQs
We GOT this!
Where do things stand with state teams needing to consent survey respondents?
Good question! We already let state teams know ASAP of an important consenting update: the Boston University IRB has verbally agreed, pending formal review/confirmation, to approve a waiver of informed consent/assent for the CMC CoIIN project!
 
Where do things stand with state teams needing to consent survey respondents?
Good question! We just got clear on this ourselves as a team.  Single Group Administrators have higher-level permissions, which includes both data entry and accessing raw data and run chart features.  Individual Participants only have permission to access raw data and run chart features; they cannot enter data.
 
STATE TEAM LEADS :
If you have any changes to the permissions of your team members based on this distinction, please email Sherry Leonard at sleonard@improvepartners.org .
What happened to the old CMC CoIIN website?
Great news! The CMC CoIIN and The Center for Innovation in Social Work and Health have launched a new design and look for the websites. Check the sites out at the following links:
In Other News...
CONFERENCE:
Save the Date: National Family Voices 2019 Leadership Conference
May 8-10, 2019
Washington, D.C.
“Families as Partners Shaping Systems Change” is the theme for this year’s Family Voices Leadership Conference. Participants will learn to improve supports to families, learn new strategies for managing nonprofits, and increase capacity for families to partner in systems change.
WEBINAR
Lucille Packard Foundation: Identifying and Serving Children with Health Complexity: Spotlight on Pediatric Care Together  
March 14, 10:30-11:30 am PT

Children with health complexity face unique medical and social factors that impact their health and engagement of health care services. Health systems play an important role in addressing both factors to build health and resilience. This webinar will feature a forthcoming issue brief that highlights how health systems can address health and resilience for children with medical complexity. 
WEBINAR
Caring For and About Children with Disabilities and Special Health Care Needs: Professional Paths Taken
February 25, 7-8 pm CT

Presented by the American Academy of Pediatrics (AAP) Council on Children with Disabilities, this webinar will provide an overview of the population of children with disabilities and CSHCN and discuss the importance of family/professional partnership in caring for this population. Speakers include CMC CoIIN NAC members Dennis Kuo and Chris Stille, and Cara Coleman (Family Voices National).
CONFERENCE
2019 Association of Maternal & Child Health Programs Conference and Workshop
March 9-12, 2019
San Antonio, TX

Oregon State Team’s workshop will be taking place on March 11, 11:00AM – 12:00PM; BU-Family Voices’ presentation will be held on March 11, 4:30PM -5:30PM; and Texas State Team’s poster presentation will be held on March 10, 1:00PM – 2:00PM. 
RECENT PROJECTS
Technology Tackles Care Coordination for Children with Special Health Care Needs (CSHCN) Challenge

Seven organizations around the country have won awards in the Challenge sponsored by the Maternal and Child Health Bureau. The winners proposed technology-based solutions designed to help families of CSHCN coordinate care for their children. Awardees next will develop prototypes and begin small-scale testing.
RECENT PUBLICATION
Dennis Kuo is a member of the CMC CoIIN National Advisory Committee:

Mattson, G., Kuo, D. Z ., & COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH. (2019). Psychosocial Factors in Children and Youth With Special Health Care Needs and Their Families. Pediatrics 143 (1), e20183171.

The report provides guidance for pediatric providers to facilitate and coordinate care and urges pediatric practices to collaborate with behavioral health providers, schools, social services, and other community agencies that are part of their patient’s life.
RECENT BLOG POST
Stafford, A. (October 22, 2018). Can You “Make the Case” for Pediatric Palliative Care?

Over the past year, the Center to Advance Palliative Care (CAPC) has gathered perspectives from leadership at national children’s hospitals to identify recurring themes about the value of pediatric palliative care. Findings from this interview series were synthesized in a March 2018 symposium presented at the American Academy of Hospice and Palliative Medicine’s and Hospice and Palliative Nurse Association’s Annual Assembly. 
NEW RESOURCES

The Association of Maternal & Child Health Programs just released more than 10 new resources to be used alongside the National Standards for Systems of Care that strive to serve the nation’s 14.2 million children and youth with special health care needs. These new resources were created to fit the expansive learning needs of all stakeholders, falling into three, easy-to-navigate formats: e-learning modules, case studies, and tip sheets. 
INFOGRAPHIC
Blueprint for Complex Care: 11 Opportunities to Strengthen the Field

An infographic from the Center for Health Care Strategies highlights recommendations for advancing the complex care field, based on input from stakeholders across the country.   
Know of any interesting events or other resources to share? Let us know at the "Give Us Feedback" button below (-:

You can always email Bethlyn too: bvergo@bu.edu
Notable Dates and Deadlines - 2019
State Team Events
Monday, February 25 th
QIDA Run Charts Training
12-1pm EDT

Tuesday, March 5 th
Monthly Open Office Hours w/ Meg
To be rescheduled to include Kristen (QIDA builder) - stay tuned for Doodle Poll
September 16th-18th
State Team In-person Meeting
Chicago AAP Headquarters
Mon: 4-7p CDT
Tues: 8:30a-4:30p CDT
Wed: 8:30a-2p CDT
State Team Learning Webinars

Thursday, March 21 st  
CMC CoIIN State Team Webinar #7  
12:30PM – 2:00PM EST
Topic: TBA

Tuesday, May 7 th  
CMC CoIIN State Team Webinar #8 
12:30PM – 2:00PM EST
Topic: TBA

Friday, July 12 th  
CMC CoIIN State Team Webinar #9
2:00PM – 3:30PM EST
Topic: TBA

Wednesday, November 6 th  
CMC CoIIN State Team Webinar #10
2:00PM – 3:30PM EST
Topic: TBA
Just for Fun (-:

"Live what you love."

~Jo Deurbrouck
What else would you like to see here?
Click the button to give us your ideas!
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|