Between October 2020 and September 2021, the MSDH Regional Care Coordinators (RCC) continued linking families and caregivers to resources and services, educating families, and providing long-term care and follow-up with families via phone encounters. During this time, the MSDH CYSHCN Program transitioned to the new agency EHR system, i.e., EPIC. As data were transferred into EPIC, the program personnel cleaned the data of duplications and CYSHCN who aged out of the program. As of March 30, 2021, EPIC data shows that there were 1,020 eligible children enrolled in the CYSHCN Program for receiving care coordination services.

 

NPMs, NOMs, SPM, and ESMs:

 

• NPM 11: Percent of children with and without special healthcare needs who have a medical home
• NPM 12: Percent of children with and without special health care needs who received services necessary to make transition to adult health care.

 

Evidence-based/informed Strategy Measures (FY Oct. 1, 2020 – Sept. 30, 2021)

 

The CYSHCN Program successfully achieved targets for ESM 1, 2, 3, and 5; however, targets were not met for ESM 4 or 6.

 

Measure	Target	Result
ESM 1: % of CYSHCN receiving care in a medical home	51.8%	96.8%
ESM 2: % of CYSHCN receiving care in a family-centered, comprehensive, and coordinated system	80%	79.7%
ESM 3 % of patients 12-21 years who talked to the healthcare team about the special health care needs as he or she becomes an adult	50%	81.1% (N=301 of 371)
ESM 4 Percent of patients 12-21 years whose healthcare team encouraged them to become more independent in managing their special health care need	50%	37.7% (N=140 of 371)
ESM 5 Percent of patients ages 0-21 with special health care needs receiving care in a dental home	50%	51.1%
ESM 6 Percent of patients ages 0-21 with special healthcare needs referred for annual dental visit	80%	28.8%

 

In addition, approximately 77.4% CYSHCN received developmental monitoring and screening; however, this was less than the target set at 80%.

 

Strategies and Activities (FY October 1, 2020 - September 30, 2021)

 

Objective 1: By September 30, 2021, increase the number of external partnerships by 10% (i.e., from 19 to 21).

 

Strategy 1: Maintain cross systems of Care Coordination with partners and CYSHCN and families.

 

Activity 1a: Assess and determine if meetings will be held live or virtually and evaluate the effectiveness of the selected platform amid COVID-19.

 

All trainings and meetings were virtual to prevent the spread of COVID-19 among participants. CYSHCN families, partners, providers, and staff were faced with numerous challenges. The health and safety of all individuals is a priority that the CYSHCN Program is committed to so at this time in-person trainings and events were moved to virtual platforms.

 

Activity 1b: Retain the CYSHCN Leadership Team/Parent Consultant Advisory Council (PCAC) comprised of but not limited to parents and caregivers of CYSHCN, youths with special needs service providers, healthcare providers, agency staff, and other advocates to continue increasing awareness and developing the curriculum/resources.

 

The CYSHCN Leadership Team met in December 2020 to discuss the status of the CYSHCN Cares 2 healthcare systems and approved the CYSHCN Cares 2 Learning Session agenda for Transformation Cohorts I & II. The systems were adjusting to meet patients’ needs although appointments declined significantly. This was apparent as the evaluator discussed gaps in data in its reports. The workgroups reported on the status of their projects. Two of the four workgroups met consistently. Products included a plan to recruit new members, training for Parent Consultants as peer support to families, and a resource template for Parent Consultants and Care Coordinators to document resources in real time.

 

Activity 1c: Collaborate with other MSDH Health Services Programs to maximize the use of resources, services, partners, families, and children reached.

 

All members (internal and external) were given an opportunity to share information about their programs or entities. As a result, the University of Southern Mississippi (USM) Institute for Disability Studies formed a partnership with Adolescent Health. The following links were made available to all members.

• Map of CYSHCN Cares 2 Healthcare Systems
• Families as Allies Resources
• Subscribe to the Ally
• ECHO Initiative
• CHAMP for healthcare providers:  pediatric mental health education and consultations: CHAMP Provider Video – YouTube

 

The CYSHCN Program remained committed to its partnership with the Office of Oral Health. In December 2020, the Program strengthened its partnership with Adolescent Health. The CYSHCN Program, YSHCN and Adolescent Health Director collaborated with Fastring Evaluations, LLC, USM Institute for Disability Studies, and Delta Community Solutions, LLC to initiate plans for the Family Engagement and Adolescent Health Summit. Genetics Services, Early Interventions/EHDI, and the Lead Prevention and Health Homes Programs are developing an integrated workplan.

 

Activity 1d: Promote covidhomebound.com to ensure that age appropriate CYSHCN who are bedridden will have an opportunity to receive the COVID-19 vaccination.

 

The CYSHCN Program Director expanded the Program's partnerships by serving on the Mississippi Emergency Healthcare Coalition (MEHC). The purpose of this expansion is to ensure that emerging needs for CYSHCN, their families and Caregivers are considered during the COVID response.  The Program began informing partners about the COVID Homebound email address, COVIDHomebound@msdh.ms.gov. This is a service for homebound persons who need assistance with receiving the COVID-19 vaccination.

 

 

Objective 2: By September 30, 2023, increase the percentage of CYSHCN who receive care coordination services by 10% (i.e., from 24,936 to 27,430).

 

Strategy 2: Implement standardized population-based strategies to improve care coordination services and quality reporting.

 

Activity 2a: Evaluate the performance of the eight CYSHCN Cares 2 healthcare systems and determine their level of engagement and capacity to participate.

 

The eight CYSCHN Cares 2 healthcare systems participated in ongoing evaluation. See results in the following sections.

 

Activity 2b: Recruit up to six additional healthcare systems providing coordinated comprehensive support to CYSHCN to participate in the learning collaborative as Transformation Cohorts I & II and Cohort III. Healthcare systems will provide a roster of a multidisciplinary team which includes a CYSHCN parent consultant and care coordinator.

 

As of 10/01/2020, there were six systems of care participating in the CYSHCN Cares 2 Learning Collaborative. One system of care from Cohort 1 and one system from Cohort 2 are not participating any longer due to competing priorities. Thus, six systems continued and were evaluated through the reporting period of 10/01/20 – 9/30/21. The six remaining healthcare systems graduated and were merged to form as Transformation Cohorts I & II.

 

The CYSHCN Program advertised its third Request for Applications for the CYSHCN Cares 2 Initiative, a care coordination learning collaborative, on July 2, 2020. The purpose of this initiative was to optimize the quality of life for CYSHCN by aligning medical/dental homes and community support services. The period for Cohort III spanned from September 14, 2020, through June 30, 2021. Applications were due on September 1, 2020. Two systems of care were awarded through this competitive application: Mississippi Center for Advanced Medicine (MCAM), and Yalobusha Medical Clinic.

 

Activity 2c: Collect patient demographics to monitor health disparities and inequities among the targeted population and plan interventions for implementation. CYSHCN Cares 2 healthcare systems and specialty providers provide demographics data.

 

Throughout the U.S., the national average of children and youth with special health care needs is 18.2% of all children and youth. In Mississippi, this same number is 23.5%. Moreover, more than 40% of Mississippi’s CYSHCN population levies at or below 200% of the national poverty level.

 

During the reporting year, the program served close to 26,000 CYSHCN (see table below). More than half of the CYSHCN population self-reports their race as Black or African American; approximately 25,000 have insurance and, of those, slightly more than 16,000 are insured through Medicaid.

 

Demographics of Mississippi CYSHCN Served, 10/1/2020 - 9/30/2021
Demographic	Total
Total CYSHCN Served	25,832
Race
African American or Black	14,422
American Indian or Alaska Native	211
Asian	148
White	9,998
Native Hawaiian or Other Pacific Islander	19
Other race or multiple races	1,034
Gender
Female	12,542
Male	13,290
Total with Insurance	25,227
Medicaid	16,129
CHIP	2,118
Medicare	1
Private	6,979
Uninsured	342

 

Activity 2d: Conduct a needs assessment with healthcare systems for care coordination and continuing care coordination engagement (Child Medical Home Index) Medical Home Index Assessment.

 

Medical Home Index Assessment: Each healthcare organization was asked to submit a Medical Home Index Assessment that collects information on 10 indicators derived from the Center for Medical Home Improvement’s (CMHI) original Medical Home Index (MHI). The Medical Home Index is a brief representation of the more complete measurement tool. It scores a practice on a continuum of care across there levels: Level 1 is good, responsive pediatric primary care. Level 2 is pro-active pediatric primary care (in addition to Level 1). Level 3 illustrates pediatric primary care at the most comprehensive levels (Levels 1 and 2). Each clinic responded to each of the ten indicators and scored their organization as Level 1, Level 2 partial, Level 2 complete, Level 3 partial, or Level 3 complete. The following table shows the progression of systems of care in Cohort 1 from baseline, 6-month, and one year follow-up.

 

Results from Medical Home Index Assessment Cohort 1 Baseline (n=4)
Item	Level 1 N (%)	Level 2 Partial N (%)	Level 2 Complete N (%)	Level 3 Partial N (%)	Level 3 Complete N (%)
#1 Family Feedback		3 (75%)	1 (25%)
#2 Cultural Competence		2 (50%)	2 (50%)
#3 Identification of Children in the Practice with SHCN		1 (25%)		3 (75%)
#4 Care Continuity		4 (100%)
#5 Cooperative Management between Primary Care Provider and Specialist		2 (50%)	1 (25%)	1 (25%)
#6 Supporting the Transition to Adulthood		4 (100%)
#7 Care Coordination / Role Definition		3 (75%)		1 (25%)
#8 Assessment of Needs / Plans of Care		4 (100%)
#9 Community Assessment of Needs for CYSHCN	1 (25%)	1 (25%)	1 (25%)	1 (25%)
#10 Quality Standards (Structures)	1 (25%)	2 (50%)	1 (25%)
Total	2 (5%)	26 (65%)	6 (15%)	6 (15%)	0 (0%)

 

Results from Medical Home Index Assessment Cohort 1 Six Month Follow-Up (n=4)
Item	Level 1 N (%)	Level 2 Partial N (%)	Level 2 Complete N (%)	Level 3 Partial N (%)	Level 3 Complete N (%)
#1 Family Feedback		3 (75%)	1 (25%)
#2 Cultural Competence		2 (50%)	2 (50%)
#3 Identification of Children in the Practice with SHCN		1 (25%)	2 (50%)	1 (25%)
#4 Care Continuity		2 (50%)	1 (25%)	1 (25%)
#5 Cooperative Management between Primary Care Provider and Specialist		2 (50%)		1 (25%)	1 (25%)
#6 Supporting the Transition to Adulthood		4 (100%)
#7 Care Coordination / Role Definition		2 (50%)		1 (25%)	1 (25%)
#8 Assessment of Needs / Plans of Care		3 (75%)			1 (25%)
#9 Community Assessment of Needs for CYSHCN	1 (25%)	1 (25%)	1 (25%)	1 (25%)
#10 Quality Standards (Structures)		2 (50%)	2 (50%)
Total	1 (2.5%)	22 (55%)	9 (22.5%)	5 (12.5%)	3 (7.5%)

 

Analysis of Cohort 1 data indicates that Aaron E. Henry Community Health Services Center, Inc. made improvements in one category, as did Coastal Family Health Center. Family Health Center in Laurel made improvements in five categories, and Mallory Community Health Center made improvements in six categories.

 

Results from Medical Home Index Assessment Cohort 1 One-Year Follow-Up by System of Care (n=3)
Item	Aaron E. Henry	Coastal Family Health	Family Health Center
#1 Family Feedback	2 Partial	3 Complete	2 Partial
#2 Cultural Competence	3 Partial	2 Complete	3 Partial
#3 Identification of Children in the Practice with SHCN	3 Partial	2 Complete	2 Partial
#4 Care Continuity	2 Partial	2 Partial	2 Partial
#5 Cooperative Management between Primary Care Provider and Specialist	3 Complete	2 Complete	2 Partial
#6 Supporting the Transition to Adulthood	2 Partial	2 Partial	3 Partial
#7 Care Coordination / Role Definition	2 Complete	2 Complete	3 Complete
#8 Assessment of Needs / Plans of Care	2 Partial	3 Partial	3 Partial
#9 Community Assessment of Needs for CYSHCN	2 Partial	2 Complete	3 Partial
#10 Quality Standards (Structures)	2 Partial	2 Complete	2 Partial

 

Results from Medical Home Index Assessment Cohort 1 One-Year Follow-Up (n=3)
Item	Level 1 N (%)	Level 2 Partial N (%)	Level 2 Complete N (%)	Level 3 Partial N (%)	Level 3 Complete N (%)
#1 Family Feedback		2 (66.7%)			1 (33.3%)
#2 Cultural Competence			1 (33.3%)	2 (66.7%)
#3 Identification of Children in the Practice with SHCN		1 (33.3%)	1 (33.3%)	1 (33.3%)
#4 Care Continuity		3 (100%)
#5 Cooperative Management between Primary Care Provider and Specialist		1 (33.3%)	1 (33.3%)		1 (33.3%)
#6 Supporting the Transition to Adulthood		2 (66.7%)		1 (33.3%)
#7 Care Coordination / Role Definition			2 (66.7%)		1 (33.3%)
#8 Assessment of Needs / Plans of Care		1 (33.3%)		2 (66.7%)
#9 Community Assessment of Needs for CYSHCN		1 (33.3%)	1 (33.3%)	1 (33.3%)
#10 Quality Standards (Structures)		2 (66.7%)	1 (33.3%)
Total	0 (0%)	13 (43.3%)	7 (23.3%)	7 (23.3%)	3 (10%)

 

Mallory Community Health Center is no longer participating in the Cares 2 Initiative. Analysis of Cohort 1 data at the one-year participation mark indicates that Aaron E. Henry Community Health Services Center, Inc. made improvements in four areas, Coastal Family Health Center improved in 7 areas, and Family Health Center in Laurel made improvements in 4 categories when compared to data at the 6-month follow up. Progress can be seen across systems as the percentage reporting in level 1 and level 2 partial are decreasing, and percentages reporting in level 2C and higher are increasing.

 

Results from Medical Home Index Assessment Cohort 2 Baseline (n=4)
Item	Central MS Health Services	GA Carmichael	SeMRHI	Urgent Care*
#1 Family Feedback	2 Partial	2 Partial	2 Partial	2 Partial
#2 Cultural Competence	2 Partial	3 Partial	2 Complete	2 Partial
#3 Identification of Children in the Practice with SHCN	2 Partial	2 Partial	1	2 Complete
#4 Care Continuity	3 Partial	2 Partial	2 Partial	2 Partial
#5 Cooperative Management between Primary Care Provider and Specialist	3 Partial	2 Partial	3 Complete	3 Complete
#6 Supporting the Transition to Adulthood	3 Partial	2 Partial	2 Partial	2 Partial
#7 Care Coordination / Role Definition	2 Partial	2 Partial	2 Partial	2 Partial
#8 Assessment of Needs / Plans of Care	3 Partial	2 Partial	2 Partial	3 Partial
#9 Community Assessment of Needs for CYSHCN	3 Partial	2 Partial	2 Partial	3 Partial
#10 Quality Standards (Structures)	2 Partial	1	2 Partial	2 Complete

 

Results from Medical Home Index Assessment Cohort 2 Baseline (n=4)
Item	Level 1 N (%)	Level 2 Partial N (%)	Level 2 Complete N (%)	Level 3 Partial N (%)	Level 3 Complete N (%)
#1 Family Feedback		4 (100%)
#2 Cultural Competence		2 (50%)	1 (25%)	1 (25%)
#3 Identification of Children in the Practice with SHCN	1 (25%)	2 (50%)	1 (25%)
#4 Care Continuity		3(75%)	1 (25%)
#5 Cooperative Management between Primary Care Provider and Specialist		1 (25%)		1 (25%)	2 (50%)
#6 Supporting the Transition to Adulthood		3 (75%)		1 (25%)
#7 Care Coordination / Role Definition		4 (100%)
#8 Assessment of Needs / Plans of Care		2 (50%)		2 (50%)
#9 Community Assessment of Needs for CYSHCN		1 (25%)	1 (25%)	2 (50%)
#10 Quality Standards (Structures)	1 (25%)	2 (50%)	1 (25%)
Total:	2 (5%)	24 (60%)	5 (12.5%)	7 (17.5%)	2 (5%)

 

Results from Medical Home Index Assessment Cohort 2 6-month Evaluation (n=3)*
Item	Central MS Health Services	GA Carmichael	SeMRHI
#1 Family Feedback	2 Complete	2 Partial	2 Partial
#2 Cultural Competence	2 Complete	3 Partial	3 Partial
#3 Identification of Children in the Practice with SHCN	3 Complete	2 Complete	3 Complete
#4 Care Continuity	3 Complete	2 Partial	2 Partial
#5 Cooperative Management between Primary Care Provider and Specialist	2 Complete	2 Complete	3 Complete
#6 Supporting the Transition to Adulthood	3 Partial	2 Complete	3 Partial
#7 Care Coordination / Role Definition	3 Complete	3 Partial	1
#8 Assessment of Needs / Plans of Care	3 Complete	2 Complete	2 Partial
#9 Community Assessment of Needs for CYSHCN	3 Complete	3 Partial	3 Partial
#10 Quality Standards (Structures)	3 Partial	2 Partial	1

*The Urgent Care Facility was no longer participating when the 6-month evaluation was conducted.

 

Results from Medical Home Index Assessment Cohort 2 Six-month Evaluation (n=3)
Item	Level 1 N (%)	Level 2 Partial N (%)	Level 2 Complete N (%)	Level 3 Partial N (%)	Level 3 Complete N (%)
#1 Family Feedback		2 (66.7%)	1 (33.3%)
#2 Cultural Competence			1 (33.3%)	2 (66.7%)
#3 Identification of Children in the Practice with SHCN			1 (33.3%)		2 (66.7%)
#4 Care Continuity		2 (66.7%)			1 (33.3%)
#5 Cooperative Management between Primary Care Provider and Specialist			2 (66.7%)		1 (33.3%)
#6 Supporting the Transition to Adulthood			1 (33.3%)	2 (66.7%)
#7 Care Coordination / Role Definition	1 (33.3%)			1 (33.3%)	1 (33.3%)
#8 Assessment of Needs / Plans of Care		1 (33.3%)	1 (33.3%)		1 (33.3%)
#9 Community Assessment of Needs for CYSHCN				2 (66.7%)	1 (33.3%)
#10 Quality Standards (Structures)	1 (33.3%)	1 (33.3%)		1 (33.3%)
Total:	2 (6.7%)	6 (20%)	7 (23.3%)	8 (26.7%)	7 (23.3%)

 

From baseline to the six-month evaluation, Central MS Health Services improved in 8 categories, GA Carmichael improved in 5 categories, and SeMRHI improved in 4 categories. In 6 months, level 3 complete has been reached for 23.3% of indicators for Cohort 2 and only 6.7% of indicators at level 1. Urgent Care is no longer participating in the initiative.

 

Results from Medical Home Index Assessment Cohort 3 Baseline (n=2)
Item	MCAM	Yalobusha
#1 Family Feedback	2 Partial	1
#2 Cultural Competence	2 Partial	3 Partial
#3 Identification of Children in the Practice with SHCN	1	2 Complete
#4 Care Continuity	2 Partial	2 Partial
#5 Cooperative Management between Primary Care Provider and Specialist	2 Partial	2 Complete
#6 Supporting the Transition to Adulthood	1	2 Partial
#7 Care Coordination / Role Definition	3 Partial	2 Partial
#8 Assessment of Needs / Plans of Care	1	1
#9 Community Assessment of Needs for CYSHCN	1	2 Partial
#10 Quality Standards (Structures)	2 Partial	2 Partial

 

Results from Medical Home Index Assessment Cohort 3 Baseline (n=2)
Item	Level 1 N (%)	Level 2 Partial N (%)	Level 2 Complete N (%)	Level 3 Partial N (%)	Level 3 Complete N (%)
#1 Family Feedback	1 (50%)	1 (50%)
#2 Cultural Competence		1 (50%)		1 (50%)
#3 Identification of Children in the Practice with SHCN	1 (50%)		1 (50%)
#4 Care Continuity		2 (100%)
#5 Cooperative Management between Primary Care Provider and Specialist		1 (50%)	1 (50%)
#6 Supporting the Transition to Adulthood		1 (50%)	1 (50%)
#7 Care Coordination / Role Definition		1 (50%)		1 (50%)
#8 Assessment of Needs / Plans of Care	2 (100%)
#9 Community Assessment of Needs for CYSHCN	1 (50%)	1 (50%)
#10 Quality Standards (Structures)		2 (100%)
Total:	5 (25%)	10 (50%)	3 (15.0)	2 (10%)

At baseline, neither system of care in Cohort 3 rated any indicators at level 3 complete. One-fourth if the indicators were at level 1.

 

Results from Medical Home Index Assessment Cohort 3 Six-Month Evaluation (n=2)
Item	MCAM	Yalobusha
#1 Family Feedback	2 Partial	2 Complete
#2 Cultural Competence	2 Partial	2 Complete
#3 Identification of Children in the Practice with SHCN	3 Partial	3 Complete
#4 Care Continuity	3 Partial	3 Complete
#5 Cooperative Management between Primary Care Provider and Specialist	2 Partial	3 Complete
#6 Supporting the Transition to Adulthood	2 Partial	3 Complete
#7 Care Coordination / Role Definition	3 Partial	3 Complete
#8 Assessment of Needs / Plans of Care	2 Partial	3 Complete
#9 Community Assessment of Needs for CYSHCN	2 Partial	2 Partial
#10 Quality Standards (Structures)	2 Partial	3 Complete

 

Results from Medical Home Index Assessment Cohort 3 Six-Month Evaluation (n=2)
Item	Level 1 N (%)	Level 2 Partial N (%)	Level 2 Complete N (%)	Level 3 Partial N (%)	Level 3 Complete N (%)
#1 Family Feedback		1 (50%)	1 (50%)
#2 Cultural Competence		1 (50%)	1 (50%)
#3 Identification of Children in the Practice with SHCN				1 (50%)	1 (50%)
#4 Care Continuity				1 (50%)	1 (50%)
#5 Cooperative Management between Primary Care Provider and Specialist		1 (50%)			1 (50%)
#6 Supporting the Transition to Adulthood		1 (50%)			1 (50%)
#7 Care Coordination / Role Definition				1 (50%)	1 (50%)
#8 Assessment of Needs / Plans of Care		1 (50%)			1 (50%)
#9 Community Assessment of Needs for CYSHCN		2 (100%)
#10 Quality Standards (Structures)		1 (50%)			1 (50%)
Total:		8 (40%)	2 (10%)	3 (15%)	7 (35%)

 

From baseline to six-months, MCAM improved in 4 categories. and Yalobusha improved in 8 categories. In just 6 months, level 3 complete had been reached for 35% of indicators for Cohort 3 and there were no indicators remaining at level 1.

 

Activity 2e: Conduct focus groups with Cohort III healthcare systems’ multidisciplinary teams to identify challenges or potential barriers in meeting the CYSHCN Cares 2 deliverables.

 

To check in with health care systems about their experience with the CYSHCN Cares 2 Learning Collaboration Initiative, brief focus groups were conducted with each system of care prior to the first learning collaborative session to be held on November 4, 2020 – November 5, 2020. The purpose of the focus groups was to identify challenges or potential barriers in meeting the deliverables that were due prior to Learning Session One. Specifically, participant organizations were asked to develop an Aim Statement, hire a Care Coordinator (Social Worker) and a Parent Consultant (parent of a CYSHCN), and identify a Population of Focus (POF) for which a Plan, Do, Study, Act (PDSA) cycle could be implemented.

 

Due to COVID-19 restrictions, focus groups were conducted virtually with both health care teams. Prior to conducting each focus group, participants were provided brief guidelines regarding the importance of confidentiality and speaking clearly so that information could be transcribed. Additionally, permission to record the session was obtained from each individual.

 

The following summary provides overarching themes in responses from organizations. The results provide suggestions from the organizations for additional resources that might be beneficial to address gaps in knowledge about best practices for serving the CYSHCN population.

 

MCAM was represented by Sharon Pennington, MD (Provider Champion), Jordan Robinson JD, MHA (Senior Leader), Jesus Monico, PhD, MPH (Team Leader), LeAnn Howard, LCSW (Care Coordinator), and Megan Ford, LCSW (Care Coordinator). Yalobusha was represented by Cinnamon Foster (Provider Champion and Senior Leader), John Coaten (Parent Consultant), and Martha Jenkins (Care Coordinator). A brief summary of the questions and responses during the focus group sessions follows.

 

1. Please introduce yourself and talk about your role in the organization. Tell me about what sort of tasks or responsibilities take up the bulk of your workday.

 

This question served as an opening question to allow participants to get comfortable talking to the facilitator. One system of care was accustomed to utilizing care coordinators in their workflow, whereas the other system discussed the need to establish a workflow which included the positions of care coordinator and parent consultant. Members of both systems of care expressed their excitement about taking part in the CARES 2 Initiative.

 

2. When you think of CYSHCN what comes to mind?

 

Answers to this question varied widely. The overall perception was both Cohort 3 clinics were very familiar with working with CYSHCN clients.

 

One participant said, “Case management. All these kids have multiple needs, from financial to insurance to equipment. And then just you know that emotional support aspect to just really kind of talking with them and the parents, making sure they understand everything that is, that this encompasses and what all they need to help support them and make it as easy of a transition from clinic to personal life, to working with siblings to the school to the community, and making sure that they feel supported from a holistic perspective.”

 

Another participant stated, “Well, I had never heard of it until this grant, so I didn’t even know that CMP was gone. So, I grew up in the using children’s medical program because I used to work with the pediatric neurosurgery orthopedics, so I didn’t even know CMP was gone. So, this has all been new for me.”

 

3. What concerns do you have about providing care or coordinating care for this population?

 

The answers to this question were similar to the previous question. Both systems seemed very comfortable with providing services to clients with special health care needs. 

 

One participant said, “This is something that our clinic has been doing I think relatively very well. Since its inception, we, our whole focus is on patients that requires some specialty care and those typically require a lot of care coordination from diabetes management to congenital heart disease to other iris conditions and so we’ve been doing this. There are some aspects of your program that we have not been focused on as well. For instance, transitioning from pediatric to adulthood and I think part of that is that we have several lifespan programs where we follow these kids past the age of 18 and so there’s not really a transition to an adult provider. But that is, I think one focus that we’ve talked about kind of bringing more light to. We do. I think our endocrinologist does a really great job trying to transition them from pediatric to adulthood in terms of insurance coverage in terms of managing college job at job prospects and things like that but taking that focus to other populations within our clinic will be very important. But as a whole, I mean we’ve already had social workers on board. We already have a pharmacist on board. We already have kind of a multidisciplinary team approach because, we recognize these patients need more than just a prescription and you’re on your way they need help and support in management of their disease throughout there, I think. Megan put it really well as it that disease process is going to be present in every aspect of their life, from their home life, their personal life, their family life, their school life and having them be successful in their disease management is important.”

 

One participant said that her concern wasn’t specific to CYSHCN but involved staying in contact with the parent/caregiver of the child. She stated, “Roadblocks or barriers that we face, not just with CYSHCN patients, but with all our patients is that their phone numbers are constantly changing or their address contact. Parents can have one phone number, and then the next week, it would be different. So that’s one of the big barriers that we see every time in our monthly reporting.”

 

4. As part of the CYSHCN Cares 2 Initiative you have been asked to write an Aim Statement that aligns the strategic goals of your organization around children and youth with special healthcare needs. Where is your team in that process, and are there any barriers that you are experiencing in writing the Aim Statement?

 

Both systems had completed their AIM statement at the time of the focus group.

 

5. As part of the CYSHCN Cares 2 Initiative, you have been asked to identify a Population of Focus that you will focus your system improvements on in the beginning of the initiative. Can you describe the process that your team is using to identify their Population of Focus?

 

Both systems of care had defined their population of focus at the time of the focus groups. One system is focusing on pediatric patients who have cardiology related diagnoses. The other will work with a subset of children ages 0-17 for all patients seen by one provider.

 

6. As part of the CYSHCN Cares 2 Initiative, we are asking your organization to hire a Care Coordinator. Where is your organization in this process? Do you anticipate any challenges or barriers to integrating a care coordinator into your current organization (policies, workflow, difficulty identifying good candidates, etc.)?

 

One system already had a Care Coordinator on staff. Their workflow is well-established. The other system has recently hired a Care Coordinator and is in the process of developing a workflow and training the newly hired employee.

 

7. As part of the CYSHCN Cares 2 Initiative, we are also asking your organization to hire a Parent Consultant who must be the parent of a CYSHCN. Where is your organization in this process? Do you anticipate any challenges or barriers to integrating a parent consultant into your current organization (policies, workflow, difficulty identifying good candidates, etc.)?

 

Both systems reported that they had just recently hired a Parent Consultant. Since COVID, much of the work contacting and following up with patients is being done virtually.

 

When asked about potential concerns, most could not foresee any issues or barriers. There was quite a bit of discussion about workflow and patient navigation, but all the discussions were helpful in that they served to clarify the teams’ expectations for the position or resolved questions around differing roles.

 

8. As part of the CYSHCN Cares 2 Initiative, we are asking you to provide data that reflects whether the CYSHCN that you provide care for have a medical and dental home, a shared plan of care, and plans for transitioning to adult services when appropriate. What challenges or barriers do you anticipate to collecting / providing this data? What assistance do you need from the CYSHCN program to facilitate collecting that information?

 

One participant stated, “That’s going to require some manual pull because we don’t have a place for them to document a plan of care, or emergency plan. I believe we have a data collection [procedure] in place where we’ve identified which patients are the CYSHCN patients, and we are reporting on them manually.”

 

One participant asked about a few options that had changed on the client encounter surveys. She said, “There were several more options available than there were in November.” The facilitator explained that there were some clinics that had experienced turnover and staff shortages, and the changes were to enable types of encounters to be recorded for both Care Coordinators and Parent Consultants.

 

9. Is there anything else you would like to share today that would make the Cares 2 Initiative more beneficial to your organization’s ability to work with and coordinate care for the CYSHN population?

 

One system’s participants wanted to discuss reporting requirements for the monthly reports (Care Coordinator and Parent Consultant), and the differences between those reports and the quarterly reports that were submitted through the dashboard. The facilitator was able to answer most of her questions and referred her to Alicia Barnes for further information.

 

Other overall conclusions: this cohort seems much better prepared than previous cohorts to begin the process of care coordination. They also seem very engaged and excited to take part in the learning collaborative. Both systems had completed all the tasks that were supposed to be completed prior to the first Cohort 3 Learning Session.

 

Activity 2f: Assess healthcare systems in Cohort III to determine if electronic health records (EHR) will support optimal patient care for CYSHCN, education, and communication via a patient portal.

 

In October 2020, the CYSHCN Cares 2 Learning Collaborative Consultant, BC3 Technologies LLC, assessed Cohort III participants for electronic health record (EHR) capabilities.  BC3T is led by a former Health Information Officer for the Health Disparities Collaborative who has supported Collaborative Learning Sessions and provided direct technical assistance and consultation to all federally qualified health centers, several rural health clinics, and private practices in Mississippi. The Chief Executive Officer (CEO) has demonstrated the experience and expertise in planning, organizing, facilitating, and addressing the challenges that arise in clinical practice that the health care system alone cannot control, including promotion of broad-reaching systems changes that complement health care efforts and the implementation of evidence-based practices and guidelines, such as health information technology (HIT) and team-based care.

 

In Cohort III, EHR assessments results indicated the following:

• 2/2 = 100% of the organizations have a certified EHR system.
• None of the healthcare organizations in Cohort III are looking to transition to a new EHR in 2021
• 2/2=100% of the healthcare organizations are sending prescriptions electronically.
• 2/2=100% of the healthcare organizations are using their EHR for clinical decision support such as alerts for drug allergies, and drug-drug interactions.
• 2/2=100% of the healthcare organizations are exchanging clinical information electronically with other key providers/ healthcare settings such as hospitals, emergency rooms, or subspecialty clinicians.
• 2/2= 100% of the healthcare organizations engage patients through health IS such as patient portals, kiosk, secure messaging through the EHR or through other technologies.

 

Cohort III healthcare organizations can report on most of the CYSHCN measures. One of the healthcare systems has been working with BC3T and their EMR vendor to make sure they are able to capture the scheduling for the parent consultant and care coordinator. The second healthcare organization is a specialty clinic, so all the measures do not relate to their current processes. For the measures that relate to their day-to-day interactions with the patients, they can capture those measures. Cohort III has been diligent in getting the foundation, coding, data captures and templates integrated in the clinic workflow and EMR. To date, they are capturing all data measures.

 

Activity 2g: Conduct Learning Sessions for the entire multidisciplinary teams on evidence-based medicine, clinical decision support, CYSHCN patient and family engagement, shared plans of care, and community-based services and support.

 

Learning Sessions are one-day meetings during which participating organization teams meet with the CYSHCN Program’s faculty/leadership team and collaborate to learn key changes in the topic area, including how to implement them, an approach for accelerating improvement, and a method for overcoming obstacles to change. Teams leave these meetings with new knowledge, skills, and materials that prepare them to make immediate changes.

 

The CYSHCN Cares 2 Cohorts I and II, Transformation Virtual Learning Session 3 was held on October 15, 2020, 9:00AM – 3:15PM via Zoom In order to determine knowledge gained during the session, a pre-test was administered prior to the beginning of the session, and a post-test was administered at the end of the session. There were 16 individuals representing the Cares 2 Systems of Care that completed both the pre-test and post-test survey.

 

The Learning Session meeting for Cohort 3 was conducted on 11/5/20 from 8:30AM – 4:00PM via Zoom. To determine knowledge gained during the session, a pre-test was administered prior to the beginning of the session, and a post-test was administered at the end of the session.  Representatives from all systems of care were present. In total, 23 participants were on the call.

 

Learning Session 2 for Cohort 3 was conducted on 2/11/21 from 8:30 AM – 4:00 PM via Zoom. Representatives from all systems of care in Cohort 3 were present. In total, 22 participants were on the call. There were 8 individuals representing the Cares 2 Systems of Care that completed both the pre-test and post-test survey.

 

As of 10/1/2021, all systems of care became part of the transformation cohort moving forward in the initiative. They had their first Learning Session of the year on 1/20/22 where they will present story boards and update their population of focus and, if they are in their second year of transformation, their population of spread. As of the end of the reporting period, there were six systems of care participating in the initiative. The combined population of focus consists of 902 children and youth with special health care needs. Of those, 811 (90%) are ages birth to 17 years old, 280 (31%) are ages 12-17 years old, and 91 (10%) are ages 18-21 years old. For the required reporting measures, 96.8% of CYSHCN are receiving care in a medical home (Goal: 51.8%, MICH30.2/HP2020); 79.7% of CYSHCN are receiving care in a family-centered, comprehensive, and coordinated system (Goal: 80%, MICH 31.2/HP2020); 51.1% of CYSHCN are receiving care in a dental home (Goal: 50%); and 28.8% of CYSHCN were referred to annual dental visit (Goal: 80%). Among those 12-21 (n=371), 140 (37.7%) had been encouraged by their healthcare team to become more independent in managing their special health care need (Goal: 50%, DH-5). Within that same age range (12-21), 301 (81.1%) had talked to their healthcare team about their special healthcare need (Goal: 50%). Approximately 77.4% received developmental monitoring and screening (Goal: 80%), and 17.2% had a shared plan of care document in their electronic health records (Goal: 80%).

 

Activity 2h: Launch CYSHCNCares2.net, an online resource and registration portal, to share resources, including EHR utilization to monitor the targeted population demographics and reduce health disparities, quality reporting, team-based care, provider prompts/feedback, patient educational resources.

 

The CYSHCNCares2.net website and portal for Cohort participants was launched in October 2020. Participating health centers use the website to obtain and share resources. They also use the portal to securely share reports on benchmarks of CYSHCN they serve, e.g., how many visits a CYSHCN saw a physician for a reason other than their chronic condition.

 

Activity 2i: Collect data from CYSHCN Cares 2 healthcare systems on selected measures (MICH, HP2020, and SPM).

 

A summary of the PDSA cycles for each of the cohorts follows.

 

Cohort 1. Coastal Family Health has been engaged in several PDSA cycles since beginning the initiative. The following PDSAs were addressed over the last year. In the area of Community Resources and Policies, they conducted a PDSA to update and revise their Comprehensive Community Resource Directory which will focus on resources related to COVID-19 and Social Determinants of Health. They continue to send email blasts with updates to families so they can receive the updated community resource information. In the area of Care Partnership Support and Patient Support, they have added additional resources/referral around dental and behavioral health services. These are currently being made available to community members. In the area of Delivery System Design, the clinic assessed the technology resource needs and the impact of telehealth on services provided to CYSHCN families. Access to technology continues to be a challenge for families and are not participating fully in family engagement activities that have been conducted over Zoom. In the area of Health Care Organization and Accountability, the PC and CC are initiating a PDSA whereby they are exploring alternative locations within the communities where patients reside and can receive services if they don’t feel safe coming to the clinic for an in-person visit. As a result, the PC/CC have seen patient at alternative sites when possible. In the area of Decision Support and Relationships and Agreements, a PDSA involving brokering a relationship with the local MYPAC Care Coordination and Choices Coordinate Care Solutions agencies to facilitate greater access to care for CYSHCN patients in need of behavioral health services. BAAs are under consideration/revision by both agencies. In the area of Clinical Information Systems and Connectivity, the team discussed the development of documents to be integrated within the EHR to capture data on CYSHCN clients to address shared plans of care, emergency plans, and adolescent transition plans. Intake forms, a safety plan, and transition plans have been added to the EHR Document Library for use by the PC/CC.

 

Family Health Center has been engaged in several PDSA cycles since beginning the initiative. The following PDSAs were addressed over the last year. In the area of Care Partnership Support and Patient Support, they have planned to increase virtual family engagement activities and have met with family members for the first family engagement event. In the area of Delivery System Design, the clinic planned to better integrate the Transition Readiness Assessment (TRA), the Emergency Plan, and Dental Template into the EHR. Currently, they are continuing to scan the TRA into the EHR. In the area of Clinical Information Systems and Connectivity, the team planned to get clarification around reportable CYSHCN diagnoses and procedural codes. They are in the process of formulating a guide to compare codes in Greenway but are having difficulty coordinating communication between the Senior Leader, IT, and Greenway.

 

Cohort 2. As of 10/2020, CMSHS was working on two separate PDSAs. One focuses on Delivery System Design and the other on Clinical Information Systems and Connectivity. For the former, they planned to integrate the parent consultant as a user of the consumers’ electronic health record system. To achieve this goal, they provided training around the EHRs components and templates, collected documentation of use from the Parent Consultant, and as a result, she now has access to client records being seen in the clinic on the day of service and the day of contact. For the latter, the goal was to be able to generate reports from the EHR for specific ICD-10 codes. To accomplish this goal, team members accessed available reports and utilized the data to contact patients and reach out to clients on their day of service. They are now establishing goals based on the report registries generated. As a result of these two PDSAs, there is now parent consultant access to records for patients on the day of service and at the time of outreach. Documentation can be entered by the parent consultant related to specific measures (dental home, dental issues, dental providers). Referrals are also able to be initiated based upon the clients’ needs for specific services.

 

GA Carmichael had several ongoing PDSAs in various stages of completion. For example, in Community Resources and Policies, they partnered with GACFHC Social Services Department to compile a list of applicable community resources and organizations that are remaining active during the COVID-19 epidemic. The social services department was able to contact many service and resource providers, but due to staff shortages, some could not be contacted. Staff will continue to work to maintain updated information on these resources. In the area of Delivery System Design, the clinic assessed the process of weekly team huddles to identify and recruit eligible clients more effectively with a goal of reaching 5 patients weekly. They found setting a specific day of the week to conduct huddles difficult as the day-to-day schedule fluctuates, and COVID-19 staffing must be the priority. Despite difficulties, they found the huddles beneficial in identifying potential patients for the Cares 2 initiative and discussing strategies to reach them. In the area of Clinical Information Systems and Connectivity, the team planned to meet monthly with IT staff to evaluate the EHR system to determine if the system is equipped to record and retrieve information on transition plans, emergency plans, and shared plans of care. They utilized a test patient environment in the EHR to review modules in the system and determined that templates would need to be added to record the required benchmark data. They are working with IT staff and the EHR vendor to modify the templates.

 

Cohort 3. Mississippi Center for Advanced Medicine was working on four PDSAs. One PDSA is related to Community Resources and Policies. For this PDSA, the PC and CC created an institutional resource manual so that referral resources could be made easier to access. The second PDSA focuses on Care Partnership Support and Patient Support. This PDSA works in conjunction with the aforementioned PDSA and serves to identify community partners that provide services specific to the CYSHCN population. Information from both PDSAs is compiled on a shared drive so that it is easily accessible by both the PC and the CC. The next PDSA they are implementing has to do with the Delivery System Design of the clinic. They have developed a workflow for identifying patients, introducing them to the program, enrolling interested families, and communicating among members to ensure a positive patient experience. Identified patients are briefly introduced to the initiative by the MD or RN at the conclusion of a clinical visit. Interested families are referred to the CC for in-person or telephone enrollment, with follow-up within a week by PC. Weekly team meetings identify new candidates, discuss enrolled patients, and troubleshoot challenges to system implementation. This has resulted in an efficient workflow process. The next PDSA is focused on the domain of Health Care Organization and Accountability. The system utilized input from MCAM leadership to design, implement, and evaluate their ongoing program. Once the data is analyzed from the population of focus, the leadership team will meet to determine how to continue to improve their process while keeping the parameters of the initiative in place. As a result of the PSDAs described above, the clinic has adopted the model of service delivery and introduction of the initiative to prospective families. The provider identifies families that qualify as CYSHCN based of the child's cardiac condition. He calls the CC who meets with the family, completes the assessment, identifies, and provides resources, and introduces the PC who will call them later. The PC then calls the parent, introduces self and services, and schedules a time to meet with the child via facetime.

 

Yalobusha Medical Clinical, LLC worked on three PDSAs. One focuses on Health Care Organization and Accountability, and the other two focus on Clinical Information Systems and Connectivity. For the first PDSA, the clinic developed and now maintains a central referral book dedicated to CYSHCN patients. All staff participate in recording referrals provided to CYSHCN clients in the referral book. Clinic staff are all tasked with reviewing the book so that they are familiar with the patient’s progress. All referrals added to the book include the patient’s name; date, reason, and place of referral; and follow-up information that provides whether the patient acted on the referral. Next, the clinic is initiating a list of CYSHCN clients starting on 10/1/2020, the launch date of participation in the initiative. Client lists will be generated by the front office staff, nurses, and the nurse practitioner. They will revisit the data generated in 90 days. For the third PDSA, the clinic investigated how to provide coordinated care to the client and improve scheduling so that there is a non-clinic schedule. Some questions they hoped to answer through the PDSA were to determine how to build the non-resource schedules into the EHR for the Parent Consultant and Care Coordinator. They would like to utilize the data generated to improve care. They consulted with Athena, their EHR provider to assist them in the building of the two non-resources schedules for the PC and CC. They then provided training to the PC and CC so that they could schedule patients and enter information into their electronic charts. In accomplishing this, it allowed all clinic staff to determine if a client was being seen by a billable provider, or on the non-resource schedule. All staff are responsible for adding patients to the non-resource schedule for the PC and CC, reviewing schedules for accuracy, and ensuring that information documented in charts is being used correctly and accurately for record keeping. As a result of these three PDSAs, the clinic now maintains a central referral book dedicated to CYSHCN patients, they have a registry that includes all identified CYSHCN clients provided services through the clinic, and they use the EHR to schedule CYSHCN patient visits with the provider, the CC and the PC.

 

Activity 2j: Identify or customize a Care Coordination Curriculum for Care Coordinators.

 

A Care Coordination Curriculum was identified. Training on using the curriculum has not yet been implemented.

 

 

Objective 3: By September 30, 2023, increase the percentage of participating CYSHCN Cares 2 healthcare systems with policies to transition YSHCN to an adult provider (from 75% to 90%).

 

Strategy 3: Establish and implement protocols and policies for transitioning youths with special health care needs to adult care and adulthood.

 

Activity 3a: Conduct an assessment to determine if CYSHCN Cares 2 healthcare systems in Cohort III have a transition policy

 

Of the two healthcare systems in Cohort III, 50% reported have a transition policy. Mississippi Center for Advanced Medicine, one of the clinics for Cohort III, confirmed that they have a formal transition policy. MCAM is a specialist organization and some of their patients do not transition due to their medical condition. We will continue to work with them on a process for those patients who are able to transition to an adult specialist.

 

Activity 3b: Provide CYSHCN Cares 2 clinical teams with an assessment tool to assess and reassess youths’ understanding of care, use of care, readiness to transition to an adult provider

 

The Family and Caregivers’ Guide (FCG) was made available for order to all UMMC specialty clinical partners and MSDH Regional Care Coordinators. An ordering form was created specifically for obtaining the FCG. A special link was provided to all RCC and UMC partners. Upon completion of the form an email is sent to CYSHCN Program. This process allowed for timely filling of request for the FCG. UMC has ordered 1300 English FCG, 150 Spanish FCG and Zero Vietnamese FCG. MSDH RCC have ordered 1500 English FCG, 100 Spanish FCG, and 65 Vietnamese FCG. To date a total of 2,800 English FCG, 250 Spanish FCG and 65 Vietnamese FCG have been distributed. All care coordinators report having enough guides to utilize with consumers. Guides were provided to new nurse employed in UMC Pediatric Endocrinology for patient engagement. Two county health departments and oral health providers placed request for guides. These orders were filled and shipped.

 

Activity 3c: Promote preventive health and wellness screenings and other emerging topics of interest among adolescents.

 

In October 2020, the CYSCHN Program collaborated with Adolescent Health, USM-IDS, Fastring Evaluation and Consulting and Delta Community Solutions, LLC to plan Adolescent Health and Wellness sessions during the virtual CYSHCN Family Engagement Summit series. The series consisted of a plenary session for the families and a breakout session for adolescents only. The sessions for adolescents only were more in-depth conversations about the plenary session topic. The Program’s youth with special health care needs (YSHCN) advisor selected topics from USM-IDS training modules for adolescents and Health Hack, branded the sessions as “Teen Talk,” and subsequently led all the planning meetings. The planning committee developed a promotion plan to ensure that families would participate. As information was disseminated, Adolescent Health developed a flyer and received an offer from Hinds Behavorial Health Services, a community mental health center, to help sponsor the summit series by possibly providing door prizes, logos on material, etc. The first Family Engagement & Adolescent Health Summit Series was held at 10:00 a.m. - 12:00 p.m. on Saturday, February 27, 2021, with minimum participation.

 

The planning committee considered hosting the series during the evening hours on a weekday but later decided to use social media. Since USM-IDS had a young adult connecting with adolescents on You Tube through “Chit Chat Thursday with Taylor,” they agreed to include the CYSHCN Program’s YSHCN and expand his video series by offering some of the sessions she selected. Other adolescents may participate in the discussion series also. Scripts will be provided to the adolescents prior to the recording the session for referencing. A subject matter will be onsite to clarify information or summarize the take-away messages. The Program partners will promote the link, measure the views, and attempt to embed a short evaluation or poll. The first session is titled “Mental Health and Social Media” and was recorded on June 17, 2021. This peer-led panel discussion was videotaped. The completion of the final product was delayed due to the pandemic. It is in final stages of production with graphics and sound being added. Once this video is piloted and evaluation measures collected, others in the series can be developed.

 

 

Objective 4: By September 30, 2021, increase the percentage of Parent Consultants (i.e., a parent of a CYSHCN who can help parents and caregivers navigate a comprehensive system of care) hired by systems participating in the Cares 2 Initiative (from 75% to 85%).

 

Strategy 4: Provide education to young adults on healthcare coverage options and coverage literacy.

 

Activity 4a: Hire Parent Consultant’s for CYSHCN Cares 2 Healthcare Systems.

 

As of September 2021, 7 of the 8 (87.5%) participating healthcare systems had hired a parent consultant.

 

Activity 4b: Conduct CYSHCN Cares 2 Learning Collaborative & Transformation Cohort Pre-Learning Session 1.

 

Learning sessions were held. See Activity 2g above.

 

Activity 4c: Monitor CYSHCN Cares 2 Parent Consultants and Care Coordinators Intakes and Referrals.

 

The CYSHCN Cares 2 Parent Consultants and Care Coordinators were to document their intakes and referrals and upload the information in the CYSHCNCares2.net secured portal.

 

Activity 4d: Collaborate with CYSHCN Cares 2 healthcare systems, parent consultants and community partners to conduct regional CYSHCN Families’ and Caregivers’ Family Engagement Summits.

 

Regional CYSHCN Families’ and Caregivers’ Family Engagement Summits were held. See Activity 3c above.