Volume 03 | November 16, 2018 View as Webpage
CMC CoIIN State Teams
Monthly e-Newsletter
WELCOME to the In-Person Meeting Debrief 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.

This issue is your go-to guide for all-things in-person meeting Oct 2018! Here, we provide summary, insights, further resources, and next steps for each session. You can find all related materials on Box (i.e., agenda, presentations, handouts, photos, Day 1 recording, etc.) at the bit.ly link below. Enjoy!
2nd Annual CMC CoIIN State Team Meeting -
Summary of Proceedings & Next Steps

Box link for all in-person materials: bit.ly/CMCBox

1. Day 1: Monday, October 29, 2018
1.1. Session 1: Family Leader Panel - Facilitated by Nora Wells & Cara Coleman, Family Voices National
a) Insights
b) Family Engagement - Salient Recent Resources & Surveys
1.2 & 1.3 Sessions 2 & 3: Measurement Parts 1 & 2 - Greg Randolph, Population Health Improvement Partners (PHIP)
Summary, Updated FAQs, & Next Steps
1.4 Session 4: Project Updates - Meg Comeau, Bethlyn Houlihan, Boston Univ. Center for Innovation in Social Work & Health
All-things-Box, IRB FAQs, & Cross-team Sharing

2. Day 2: Tuesday, October 30, 2018
2.1 Session 1: Mapping Your Process - Kerri Deloso, PHIP
Summary, Insights, & Further Resources
2.2 Session 2: Identifying & Prioritizing Change Ideas - Mary Webster, PHIP
Summary, Insights, & Further Resources

3. Day 1 & Day 2: Breakout Sessions
3A. Breakout A: Alternative Payment Models - Steve Fitton, Health Management Systems
More Soon & Highlighted Resource: A Primer on Value-Based Strategies for Improving Financing of Care for Children and Youth
3B. Breakout B: Family Engagement/Difficult Conversations - Cara Coleman, Family Voices National
3C. Breakout C: Leading Change/Overcoming Resistance - PHIP Team
Summary, Insights, & Further Resources

4.  State Team Corner
Family Engagement Activities Monthly State Team Updates
NOTE: Also check out relevant resources under "In Other News"
5.     In Other News...
6.     Notable Dates and Deadlines - 2018
7. Give Us Feedback 

We are exploring ways to balance breadth and depth of content with brevity. So, 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
(end of e-newsletter).
Day 1: Session 1
Family Leader Panel

Insights from the Family Leader Panel
by Cara Coleman, Family Voices National
The second In-person meeting of the CMC featured two family-led sessions; a panel of family leaders on Day 1 and a breakout session on family engagement/difficult conversations, offered both on Day 1 and Day 2.

The Family Leader Panel was made up of 5 family leaders from family-led organizations in Washington, Kentucky, Minnesota, Oregon, and Texas, and was facilitated by Nora Wells, Executive Director of Family Voices National Office. Prompted by prepared questions and those from the audience, the panel shared experiences, stories, challenges and successes thus far in their CoIIN and other family leader work.
Some of the most salient points came when family leaders emphasized the importance of having families and family-led organizations involved in every aspect of the QI projects, and shared tangible tips/tools in partnering with families ...
Family Engagement - Salient Recent Resources & Surveys
(click on each title below to access)

Whether it’s facing the shock of a first diagnosis or responding to the many challenges along the way, parents of children with special health care needs often find that their most highly valued source of support is an experienced and knowledgeable parent who has navigated the same path. But where to find such a parent? Family-to-Family Health Information Centers may provide an answer. 

Families with CSHCN can have major challenges during disasters. The CDC is working with the Pennsylvania Chapter of the American Academy of Pediatrics and Drexel University to survey families to know what kind of information families need for their children during disasters. The answers to this survey will be used to help the government, your doctors, and community groups get families the information they need to help keep their children safe during disasters.The survey should take you 15 minutes to complete.

The Council on Medical Student Education in Pediatrics is revising its General Pediatric Clerkship Curriculum. The foundation includes  " The skills, attitudes, and knowledge that every doctor must know and do to safely and compassionately care for children." The Council is asking for your input as a parent who has interacted with physicians caring for children on what you feel are the crucial components any physician needs to know to care for children. It will take approximately 5 minutes to complete the survey.
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.
Day 1: Sessions 2 & 3
Measurement Parts 1 & 2

Summary, Updated FAQs and
Next Steps

by Greg Randolph, PHIP
The Measurement Session Parts 1 & 2 were a working sessions for state teams to:
  • further their measurement plans for the CMC CoIIN QI measures, esp. the process details for sampling and data collection, and the data collection timeframes;
  • identify and plan for any state or site-specific measures; and
  • pinpoint any remaining questions teams have and get timely answers from the CoIIN partners.
Day 1: Session 4
Project Updates
In this brief session, Meg and Bethlyn shared that Box is being configured as the CMC CoIIN online shared workspace. Currently, there are individual state team folders administered completely by the state team leads. Just after Thanksgiving, all state team members will be invited to a shared folder "CMC CoIIN State Team Materials". Anyone invited as a collaborator can post or edit any document, and create new folders, following Box's basic guidelines. If you already have an email registered in Box, then the folder will automatically appear in your Box account. Bethlyn handed out a draft map of this folder, and a link to all of the posted materials for the 2nd annual in-person meeting ( bit.ly/CMCBox).
Bethlyn has compiled an IRB FAQ document, which will be a living document, updated with new questions and responses as they arise. There is also a related QIDA Security document. All current IRB materials can be found on Box. If you have any related protocols drafted - or approved - to share, you are welcome to email them to Bethlyn (bvergo@bu.edu ); in the next few weeks, as you'll see below, you'll be able to post anything you'd like to share on Box yourselves.
Cross-sharing Materials
We would like to use Box to cross-share materials among teams. We are creating the infrastructure for this on Box, and will begin with next month's e-newsletter to highlight new resources and tools from state teams. You will be able to add to the cross-sharing library at any time.
Day 2: Session 1
Mapping your Process
Summary, Insights & Further Resources
by Kerri Deloso, PHIP

On day 2 of the Learning Session, our partners at PHIP covered Value Stream Mapping, Process Flow Diagrams, Change Ideas and Priority Matrices . During these sessions, Teams had the opportunity to bring their GEMBA observations, apply them to the newly covered material, and then see their processes “come to life.”

Day 2: Session 2
Identifying & Prioritizing Change Ideas
Summary, Insights & Further Resources
Mary Webster, PHIP
Session 2 built directly on Session 1, introducing the priority matrix as an important tool for guiding what change ideas have the biggest impact on the AIM as well as level of difficulty in execution. For each identified change idea, the team must discuss its impact on the AIM and difficulty of implementation taking into consideration, time, manpower, admin support, customer input, etc. The idea is placed on a sticky note and placed into one of the 4 matrix quadrants (see handout) ...

Days 1 & 2: Breakout Sessions
Breakout A: Alternative Payment Models
Next steps are being discussed, based on evaluations and on the wide variability of state environments, projects, and needs. More soon!

In the meantime, here is a valuable Catalyst Center resource:
A Primer on Value-based Strategies for Improving Financing of Care for Children and Youth
Value-based purchasing and value-based insurance design are gaining increasing attention as strategies for reducing health care spending and improving health outcomes – “value” being the operative concept. However, there is not enough evidence to date regarding the effectiveness of these strategies; what does exist is primarily focused on interventions impacting adults. This primer focuses on opportunities to increase value in spending on health services for children and youth with special health care needs (CYSHCN) through select alternative payment mechanisms and delivery innovations, and potential roles for Title V and family leaders in these efforts.
Breakout B: Family Engagement/Difficult Conversations
Cara Coleman, Family Voices National
The Family Engagement/Difficult Conversations Breakout Session (Day 1 and Day 2) focused on some of the many types of difficult conversations that have been identified thus far in various aspects of Year One, and the start of Year Two of the CMC CoIIN. Difficult conversations were broken down into levels - individual and systems. At the individual level, the session looked at why measurement of and conversations about quality of life of CMC, well-being of families and family engagement may be difficult. Participants shared deeply, openly and honestly ...

Breakout C: Leading Change/Overcoming Resistance
 Greg Randolph, Mary Webster, Kerri Deloso; PHIP Team
The Change Management and Resistance Breakout Session offered participants an opportunity to see where they and their team may fall along the change continuum using Maurer’s framework. To start off the session, we had participants simply cross their arms, and again, the other way. Even with such a relatively easy & natural change, participants noted that it was difficult, required thinking before doing, and felt uncomfortable. This can be the same with process changes - even easy changes can cause a physical and/or emotional reaction causing us to revert back to what we know.

We all deal with change the same way – we try to avoid it. Teams then learned about the change and resistance continuum with the introduction to Rick Maurer and the 3 levels of Resistance. The three levels include:
1) “I don’t understand”,
2) “I don’t like it” and
3) “I don’t like you.  
S tate Team Corner
The latest and greatest from you for you!
Here, we feature each state team's family engagement activities from the monthly state team updates 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.

You can view all state team summaries here

You can view photos of state team storyboards here

TX State Team Celebrates Success:
Face-to-face Exchange Crucial to Developing Trust Across Institutions for Payment Reform
By Rahel Berhane

One of the challenges of moving to a PMPM arrangement with the MCOs was the question of allocating an appropriate patient: case manager ratio. The MCO had committed to some ratios and notified State Medicaid prior to this arrangement. We felt that we needed a rational approach that takes into account complexity, age and level of impairment. This is important operationally as we needed to have a uniform approach to all our patients. We realized that we needed to show the MCOs the logic behind our scoring system- and also make sure State Medicaid (HHSC) was also on board with this approach. We used the opportunity of the in-person visit in Chicago to present to the team (to include  representative  from BCBS and also HHSC) over an ad-hoc meeting after dinner. We also made sure we included measures by which we track the appropriateness of the ratio and mechanisms to adjust as needed.

This was a good example of how people who work under different institutional constraints can come up with a solution when there is an opportunity for an  in person  face-to-face exchange of views to build trust.
Family Engagement Activities by State – Highlights from the October project update summaries

We have family representatives on each work groups. Sharon Henderson, Tammy Moore and Susan Colburn. We also have a Youth Consultant, Sarah Williams on our team. At the October 11 face-to-face meeting, the CSHCN State Office parent consultant shared the new family engagement measures and tracking table with team members. One team member expressed concern that a caregiver section was not included. Team members were asked to assist in recruiting two parents from Mobile and Birmingham to assist with data collection/surveys. We plan to ask family representatives and members of the family council (still in development) to assist in carrying out the family engagement activities. These activities include surveying families with CMC.

In Other News...
CARE Award Webinars: Improving Care for Children with Medical Complexity

In this four-part webinar series, the 10 participating hospitals will share their stories of success during the CARE Award; Hear how each hospital team made learning contributions to major themes of the project, including stabilizing costs, designing optimal care coordination, transforming the care delivery system, and prioritizing family partnership
Congressional Briefing: Improving Care for Children with Complex Medical Needs

During this briefing, a group of panelists including representatives from the Centers for Medicare and Medicaid Services, a state Medicaid program, a provider and a parent of children with medical complexity described the key factors that impact the quality, affordability, and accessibility of care for children with complex medical needs.
2017 National Survey of Children's Health Data Release

The Health Resources and Services Administration (HRSA) announces that data from the 2017  National Survey of Children’s Health  (NSCH) is now available.
Integrated Care for Kids (InCK) New listserv

The Center for Medicare and Medicaid Innovation (Innovation Center) is announcing a new model as part of a multi-pronged strategy to combat the nation’s opioid crisis. The Integrated Care for Kids (InCK) Model is a child-centered local service delivery and state payment model that aims to reduce expenditures and improve the quality of care for children under 21 years of age covered by Medicaid and the Children’s Health Insurance Program (CHIP) through prevention, early identification, and treatment of behavioral and physical health needs.
The Roadmap Project: Focus on Emotional, Mental Health for CSHCN and Families

Increasing awareness of the need to build resilience and support emotional health in children with special health care needs and their caregivers is the focus of a national project led by the American Board of Pediatrics. The Roadmap Project has developed a “change package” that can be used particularly by pediatric clinicians, but also by families, patients and other providers.
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
Thursday, December 20, 2018
Bimonthly State Team Webinar #5
TOPIC: Finalizing the Who, What, When & How of Data Collection for Your Team
2p-3p EDT

SITE VISITS beginning Spring 2019
To be scheduled w/ individual states

September 2019
State Team In-person Kickoff &
In-person Meeting
Chicago AAP Headquarters
Exact dates TBD VERY SOON!
Just for Fun (-:
"When we strive to become better than we are, everything around us becomes better too."
~Paulo Coelho
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| http://cahpp.org/project/CoIIN-CMC