Team Minnesota initially took part in the National Care Coordination Academy (NCCA) to learn and share with others who care for similar patients. In this interview, Kari Kubiatowicz, BSN, RN, Director of Care Management at Gillette Children’s and co-leader of Minnesota’s NCCA team, discusses how her team’s work through the CMC CoIIN and the NCCA led to increased family engagement and growth of their care coordination model. This conversation has been edited for length and clarity by Candace Jarzombek, CMC CoIIN Graduate Research Fellow.

What would you say were the most valuable parts of the NCCA for Team Minnesota?

This has been our best take at having real family representative involvement from the beginning. Previously, we valued patient- and family-centered care and would seek feedback, but usually only after the care team came up with the intervention to ask, ‘Hey, can you give your blessing?’ It’s a lot better to just involve families from the beginning because they can modify as we go. It’s been a really cool opportunity for our team to learn from families and make more meaningful impacts.

Could you tell me more about how you’ve involved family representatives in your care coordination innovations?

One of the greatest outcomes of our CoIIN work was having a visual care map, which we’ve toyed with before. Years ago, various members of the team had done their own, and we had families show us theirs. Our CoIIN family representatives put together an amazing one as part of our sustainability plan to present to Gillette’s leadership team to request continued financial support for the program. It has been the most impactful slide I have ever shown in any presentation in my whole career. We recently shared it with our leadership team, and after the presentation, they said, ‘Just tell us what you need. We’ll make it happen.’ This is the message we’ve been trying to deliver and haven’t been speaking the same language until we utilized the family voice.

Has participating in the CoIIN and NCCA changed the way that your team uses data to inform your process improvements?

That change has been real, and it’s been helpful. I think we would have gotten there, but the NCCA sped up the process. We’ve been able to take tools that other people have already validated and trial them on our own.

Could you talk about any other changes your team has made to care coordination or any innovations you’ve developed over the course of the NCCA?

We started with a team of one nurse care coordinator. After the impact of the care map and our outcomes, as of today, we have about four full time nurse coordinators. I just posted three more job postings this spring. Our team has grown immensely, and we’ve been able to get the support for that because of the impact care coordinators have had on our patients’ and families’ experience. That’s a big part of our story that I’m thankful for.

The impact that participants like our family members have had on our core team work group, we have now started to bring into other areas of our organization with other quality initiatives. It’s going beyond just complex care.

How will the outcomes from your NCCA work impact future work on care coordination at Gillette?

It has changed the way that we approach quality improvement with our family involvement and proactive collaboration outside of Minnesota’s borders and our hospital walls. It’s reinforced the importance of working together across organizations to serve CMC really well. It’s been exciting to be a part of a culture where it’s all about sharing.

Is there anything else you would like to share about Team Minnesota’s NCCA work?

Just that I am full of gratitude for the NCCA, gratitude for the other organizations, gratitude for Rhonda Cady for leading us in this effort, and for our families. Families have been the real game changers in all of this.

Team Texas participated in the National Care Coordination Academy (NCCA) to continue the family-centered care coordination work they started as part of the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN). According to Ivy Goldstein, State CSHCN Health Coordinator and CMC CoIIN Program Lead, and Rahel Berhane, MD, Medical Director of the Children’s Comprehensive Care Program, the NCCA has allowed Team Texas to further refine their care strategies and explore family-centered outcome measurement.

“We were exposed to a variety of standardized, validated measures as part of the NCCA. We felt that there was a void in these measures in terms of really, truly getting a sense of the parent experience of interactions with the care team, so we engaged our family work group in coming up with questions that would truly measure their experience,” Dr. Berhane said.

As the team has started to pre-test this new survey, they have continued to engage family representatives each step of the way. Dr. Berhane described the iteration process for the outcome measure as “driven by the parents who put it together.”

Another of Texas’s innovations is a mobile device app where families can access their Shared Plan of Care (SPoC). During the first years of the CMC CoIIN, the team developed the application and created “modules” within it that lay out the care plan for a child depending on how they are feeling that day. Care instructions, including medications, for a well day are highlighted in green, sick day plans are highlighted in yellow, and crisis instructions are highlighted in red. All of this information is entered into the electronic medical record by the provider and is automatically pushed to the app, where it is available anytime at the caregivers’ fingertips.

Collaboration with families during the NCCA led to the development of another app module, called Action Items. Goldstein explains that caregivers requested the addition of this section to help keep track of what needs to be done before their next appointment. Action items for both the family and providers are included in this section, each with due dates. Checking this list at regular intervals ensures that the clinic staff has “closed the loop” on all open action items. For example, an action item of referral to a specialist is not complete until the clinic team has verified that the patient had an appointment with that specialist and has received the specialist’s notes.

A main goal for Team Texas has been to increase care integration across all of a child’s providers. To explain care integration, Dr. Berhane said that a primary care provider sending a referral to a specialist and receiving feedback from that specialist in the form of a letter would constitute a low level of integration, whereas if the two providers engaged in a case review together, that would be a higher level of integration. The strongest care integration would be the two providers joining the patient visit together, potentially through telemedicine. Although achieving strong care integration can be difficult due to current payment models, Team Texas is exploring ways to transform the system and make their integrated care vision a reality.

“What we have suggested is that we would have twice-a-year visits, quarterbacked by the primary care provider in collaboration with the parent. Not only will the specialists that contribute to the care plan will be invited, but also there would be a lot of pre-visit preparation with the family and the nurse case manager using the app to document their goals and what they are seeking to achieve in the coming six months. We’re calling it a whole child visit instead of the well-child visit. This naming was suggested by a parent who wanted us to emphasize that the children may not be well in the traditional definition, but the visit’s comprehensiveness is where they want it to put the emphasis,” Dr. Berhane said.

When asked about what they were most proud of as part of the CMC CoIIN and NCCA, Goldstein and Dr. Berhane agreed that family engagement was the most important part of their work.

“The CMC CoIIN made family engagement such a priority, and that changed all of us, in our lens and our approach. Of course, the payment structure and making this sustainable financially is vital, but bringing families to the center and empowering them to lead their child’s care as integral members of the team is only going to help make the system more sustainable,” said Goldstein.

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By Candace Jarzombek, CMC CoIIN Graduate Research Fellow

Team Indiana chose to participate in the National Care Coordination Academy (NCCA) to learn and share with other care coordination innovators. In this interview, Mary Ciccarelli, MD, Clinical Director for Team Indiana, discusses how participation in the NCCA assisted in her team’s journey toward expanding care coordination services across the state. Their care coordination innovations include a training and coaching curriculum for care coordinators and Care Coordination Playbooks to facilitate system navigation. This conversation has been edited for length and clarity by Candace Jarzombek, CMC CoIIN Graduate Research Fellow.

What are you most proud of achieving as part of the NCCA?

We used our participation in the CoIIN network, as well as the NCCA, as leverage in our own state to push forward conversations we were having about piloting models with Medicaid. I attribute our joining the CoIIN four years ago as the event that pushed our state to say, “okay, if we’re going to [invest in care coordination] at any time, this might as well be it.” The NCCA was another different crowbar to try to open that door. We are planning for a launch of a big demonstration project now as a statewide expansion of care coordination using COVID relief dollars. The state is preparing to invest $9 million in this over the next three years. Our state’s never done that before, and it’s an opportunity we can’t blink our eyes at.

What innovations in your care coordination model did you make as part of the CoIIN and NCCA?

Our main innovation is our care coordinator virtual coaching model. We hired a very experienced care coordinator nurse and an experienced social worker and built a first-week orientation with a five-month high-intensity training curriculum followed by a longitudinal coaching model. In the high intensity curriculum, there are weekly didactic sessions spanning 20 key content areas as well as weekly open-ended coaching sessions, for specific case discussions.

After the first six months, there are episodic video conference lectures for the statewide cohort of nurses. We try twice a year to do something face-to-face because physically being together is important in terms of the care coordinators’ ability to relationally make use of each other in the coaching sessions.

What content or resources have you developed as part of this coaching model?

We have about 30 documents called Care Coordination Playbooks that are process recommendations of how to navigate the complex systems of care across both health and social systems. For example, how do you get a wheelchair fixed through Medicaid or through an alternative source if Medicaid won’t cover it? The playbooks cover the “work around methods,” like special community resources, such as churches, who will help us. They encourage care coordinators to get to know their own community and to know which door to knock on when you have an unusual request.

At the simplest level, the Playbooks took the lengthy Medicaid provider manuals, often over 300 pages, and translate them into, “So you want to get incontinence supplies. Okay. Which plan is the patient on?  Which provider will cover that? Here’s how to do it.” The Playbooks explain the home and community-based waivers and the key choices families have to make related to them, and help care coordinators to counsel families on which choice is the right one for them at the current time. It is one of our principles that by training care coordinators, we want them to be skilled to do the right thing, at the right time, for the right person, which is more targeted and precise and hopefully yields more effective outcomes, rather than just tossing all the resources at a new team member.

What do you think is next for Indiana’s care coordination program?

It is the goal, in the three years of this expansion, to prove that we can move this model up to scale. We’ll move from 300 to 3000 covered patients over the next three years. If we can prove the model works at a scale of 3000, then we’ll plan to launch it statewide at the completion of the demonstration project. The other big innovation of this next demonstration is that we will expand beyond pediatric practices. In year two, we’ll start rolling in practices who are for adults with intellectual and developmental disability (IDD). A substantive problem in the care of children with medical complexity is their transition to adult care and the diminished access to care, or perceived diminished access, in the adult world, particularly for people with IDD.

Is there anything else you would like to share about Team Indiana’s work?

Our work in social determinants of health (SDOH) has led to a large facet of our Playbooks. We’re trying to decide at the children’s hospital level how to do general SDOH screening for everyone. However, for those with medical complexity, we feel that you have to do a deeper dive into social complexity to help you identify and modify barriers to quality outcomes. We’re currently planning to continue to use a more advanced assessment tool in that population. We hope to prove that by using an expanded assessment, we serve our families with more measurable success.

The National Care Coordination Academy (NCCA) is a collaboration between the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN) and Boston Children’s Hospital. This two-year program has assisted state teams in building sustainability for their care coordination models for CMC. In this interview, Richard Antonelli, MD and Heather Pomella, NP, Medical Director and Manager of the NCCA respectively, discuss how the CCA came to be and the impact it has had for participants. This conversation has been edited for length and clarity by Candace Jarzombek, CMC CoIIN Graduate Research Fellow.

What motivated the creation of the CCA?

Dr. Richard Antonelli: When Meg Comeau, Principal Investigator for the CMC CoIIN, first approached me, more than two years ago, the CoIIN had a couple of webinars on care coordination, and feedback from the teams came back and they wanted more. That’s what really set the platform ablaze, as far as I’m concerned. We just needed four [CMC CoIIN] state team participants, and year one, it grew to what, a dozen [including external teams]? Then year two, we had two new teams join. I think that that demonstrates an ongoing appetite across the country for ongoing technical assistance for care coordination capacity building, interprofessional training, and performance measurement. I want to make sure that we give Meg a strong shout out here because it was her offer to make the NCCA happen. I’m just so grateful for her leadership.

What have been the most impactful elements of the CCA, both for you as leaders and for the state teams?

Heather Pomella: I feel like we gave a platform for teams to practice talking about the work that they do, and how to articulate the importance of what they’re doing to advocate for more funding, or even just to advocate for more respect within their own communities and their own clinics. One of our main faculty members is Jeff Schiff, who is a physician and past Medicaid medical director. To have him on all of these meetings and hearing about all these teams’ projects and to get his live feedback, I think was really special.

Dr. Richard Antonelli: Just like politics, care coordination is all local, but one of the powerful elements of the Academy is to call out what are the common themes, tools, and elements, that are the things every state Title V director, every Medicaid director, every family leader should be thinking about every day in this space. I think what the leadership of the NCCA has really done is to coalesce around those common elements, but then allowing each state team to leverage its own strengths and bridge their respective gaps.

Did the CCA help reduce the social isolation within the pandemic?

Dr. Richard Antonelli: I think that the isolation, especially for families of CMC, and adults with disabilities, if anything, was truly exacerbated during the pandemic. There is an element of the Academy that I think provided a community of support, and that was really crystallized around a shared sense of mission and a shared sense of vision. I think that’s one of the things that I found particularly compelling about the Academy.

What were each of your biggest takeaways from the CCA?

Heather Pomella: In terms of biggest takeaways, the work isn’t done, we are sort of just getting started. We accomplished a lot, but the work doesn’t stop here. I hope that teams are able to continue with what they’ve learned. Other big takeaways are the importance of family engagement throughout care coordination, [and] building out your program. You should always have a family partner helping you with this process so that it incorporates your population, and you’re getting that feedback. Get to know your population, [and] make sure you’re serving the needs of your population. What you might think is what they need is maybe not what’s most important to them, so just asking them, being open and honest, and just being there for them is important.

Dr. Richard Antonelli: The key takeaways are this: CMC, CYSHCN, and their families, need care coordination. It has measurable outcomes that meet the expectations of families. Can we do better? Absolutely. We must do better. There are disparities of access to care, disparities to access in care coordination capabilities and resource allocation, and these are rampant. One of the things that I feel is essential going forward is an explicit focus on race, ethnicity, language, and disability status in our training, in our performance measures, and in our advocacy for all things related to healthcare delivery in the United States.

The CMC CoIIN project at the Center for Innovation in Social Work & Health (CISWH) has received an $830,000 supplemental funding award from the U.S. Health Resources & Services Administration (HRSA), allowing the project team to continue its innovation in care delivery for children with medical complexity (CMC) for an additional year.

The project is one of six currently funded by the HRSA’s Maternal and Child Health Bureau that address complex health problems through wide-ranging, interdisciplinary teams called “CoIINs” – Collaborative Improvement and Innovation Networks. The primary goal of the CMC CoIIN project is to improve the quality of life for children with medically complex conditions. In addition, the project aims to increase the cost-effectiveness of their care and improve the well-being of their families.

Since HRSA initially funded the project in 2017, the team has developed and implemented numerous novel care delivery strategies, ranging from implementing a multi-specialty integrated service delivery system in Texas to developing a complex care resource team in Indiana.

The CMC CoIIN project team is led by Principal Investigator Meg Comeau, a nationally recognized expert on health care financing policy for children with special health care needs. The team also includes project directors Bethlyn Vergo Houlihan (SSW’00, SPH’02) and Jessica Flaherty; program managers Libbi Ethier and Ben Plant; and Boston University faculty members Professor Randall Ellis of the Department of Economics and Professor Christopher Louis of BU School of Public Health. Federal, state and local leaders also play an important role. The project has ten interdisciplinary state teams which span across the U.S., and in total, more than 200 individuals have contributed to the project.

Having initially launched as a four-year project, CMC CoIIN will now receive funding through July 31, 2022.

The project is based at the Center for Innovation in Social Work & Health, a research center at Boston University School of Social Work dedicated to expanding the impact of social work in health care and public health in order to improve the health and well-being of vulnerable populations nationally and globally.

For more information, visit the Collaborative Improvement and Innovation Network to Advance Care of Children with Medical Complexity project page.

Phoenix Children’s Hospital and the Arizona state Maternal and Child Health (MCH) Title V / Children and Youth with Special Health Care Needs (CYSHCN) program collaborated to adapt and implement content from the curriculum to enhance care coordination for children with medical complexity (CMC) and their families seen at Phoenix Children’s Hospital. The adaptation was very successful, and planning is underway to facilitate additional trainings on shared plans of care and family-professional partnerships with care coordination stakeholders who attend the initial training. Read more.

Our very own Meg Comeau, a long-time CSHCN professional and the Principle Investigator for The Collaborative Improvement and Innovation Network to Advance Care (CoIIN) for Children with Medical Complexities (CMC), suggests that commonly used terms such as “family burden” and “medical complexity” are viewed differently by parents and professionals, with consequent impact on how services are provided. She proposes reconciling those views, with the goal of creating a better system of care. Read more.

Children with medical complexities (CMC) need a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care. This article looks at the sociodemographic disparities in the intensity of end-of-life care for CMC and whether or not they are receiving high-quality and goal-concordant care end-of-life care. Read more.

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.

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.