Children and Youth with Special Health Care Needs (CYSHCN) Annual Summary

The narrative below describes the rationale for why Mississippi selected certain measures and provides detailed narrative to link the selected NPM’s, SPM’s with Mississippi’s identified state priorities.

Priority:

1. SPN: 2 Increase access to health care/medical homes for children and youth with special health care needs (CYSHCN).

       NPM 11: Percent of children with special health care needs having a medical home

Program Purpose and Summary

For more than 30 years, the Mississippi State Department of Health (MSDH) has served as the safety net provider for children with special health care needs.  The MSDH Children & Youth with Special Health Care Needs (CYSHCN) Program, a Title V Program, formally termed the Children’s Medical Program (CMP), has a long history of being the payor of last resort for families without health insurance or with insufficient coverage.  Those unmet costs included deductibles, co-pays, co-insurance, and goods or services that insurance and/or Medicaid did not consider medically necessary.  

As a result of changes in healthcare delivery, the MSDH CYSHCN Program transitioned from providing direct services to children who need specialty medical care or have chronic, physical, developmental, behavioral, emotional conditions to filling gaps in services.  This was accomplished by employing skilled registered nurses and licensed social workers at the county health departments to serve as Regional Care Coordinators (RCC) in Mississippi’s three (3) public health regions. The RCCs assess CYSHCN /family needs, provide ongoing support and education, and focus coordination of care on linking CYSHCN/families to available resources and other outreach health services.  To broaden the program’s reach, the CYSHCN Program implemented innovative population health strategies in the clinical and community setting by (1) facilitating healthcare systems with enhancing care coordination and transitioning CYSHCN from pediatric to adult medical care services; (2) increasing CYSHCN families’ involvement in all aspects of decision making; (3) identifying local and state services and resources for CYSHCN families; and (4) providing family support.

The CYSHCN Program aims to improve the system of services for CYSHCN.  The program’s objectives are to: (1) develop strategic partnerships for systems integration across programs and agencies; (2) develop a state plan for systems integration with state-specific strategies to decrease duplication and fragmentation of services and improve the overall delivery of services; (3) increase the proportion of CYSHCN receiving coordinated care in a medical home by 20% over the reported 2009/2010 level; and (4) develop a shared portal for families and providers to access  information about statewide services and resources.

Care coordination is challenging for children and youth with special health care needs, particularly when considering the complexities of their chronic medical and disabling conditions coupled with the need for community support.  To overcome the challenges, infrastructure has been established on national and state-levels by aligning efforts to improve care in health systems at the community, organization, practice and patient levels. The Patient Centered Medical Home model is designed to address all patients’ health care needs or taking responsibility for appropriately arranging care with other qualified professionals. For those reasons, the Care Coordination Model, coupled with the Care Model for Child Health which integrates the medical home concept and Chronic Care Model (CCM)/Expanded Chronic Care Model are utilized to document NPM 11, the percentage of children with and without special healthcare needs who have a medical home and NPM 12, the percentage of children with and without special health care needs who received services necessary to make transitions to adult health care is pertinent and supports efforts to improve the quality of life for CYSHCN in Mississippi.  

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Children and Youth with Special Health Care Needs Annual Report

Accomplishments and Challenges

Priority Area:  Increase access to health care/medical homes for children and youth with special health care needs (CYSHCN).

Objective 1: By June 30, 2020, increase the number of CYSHCN who are active participants on the CYSHCN Program by 10%.

Strategy 1:  Establish Cross Systems of Care Coordination with partners and CYSHCN and families.

Rationale Strategy 1: Standards for Systems of care for Children and Youth with Special Health Care Needs Version 2.0:  Care Coordination as a part of the medical home and integrated community based services; Promote Care Coordination and Medical Homes:  Strategy 1 and activities were selected to provide optimal care coordination and integration of services needed by CYSHCN and families. 

 

Activity 1a: Establish a CYSHCN Advisory Council comprised of but not limited to CYSHCN Parent                                           Consultants, service providers, healthcare providers, agency staff, and other advocates.

Report Activity 1a:

The CYSHCN Program inaugurated the advisory councils and termed it as the CYSHCN Leadership Team Meeting on September 11, 2018.  Invitations were disseminated to twenty-three (23) internal and external partners registered and 21 attended. Presenters set the landscape by explaining the history and future direction for the CYSHCN Program, discussing national and state statistics for CYSHCN, and explaining issues related to a fragmented system of care for CYSHCN.  This action-oriented leadership team provides guidance and recommendations to the CYSHCN Program, increases awareness of CYSHCN and family engagement, participates in the development of interventions, and promotes evidence-based guidelines and best practices.   Ninety percent (19) committed to joining the leadership team and meeting monthly during the infancy phase.  Since the inception, membership has increased by 16%; and approximately 40% of the members have a child with a special health care need. Members started meeting bi-monthly in April 2019 and continue to meet according to the schedule. Based upon their expertise, several members have been designated to serve on a Project Team.  Also, the Leadership Team agreed to establish a CYSHCN Parent Leadership Team to assist with designing a training curriculum for parent consultants, identifying resources, and implementing family engagement activities.  When possible, the parents’ and caregivers’ engagement activities will align with the clinical initiatives.  Since the inception of the CYSHCN Leadership Team, members have been meeting and providing invaluable support to the CYSHCN Program. 

 

 

Activity 1b:  Design a request for proposal learning collaborative curriculum for implementation.

Report Activity 1b:

The purpose of CYSHCN Cares 2 is to enhance care coordination within family-centered medical/dental homes for CYSHCN. More specifically, CYSHCN Cares 2 promotes team-based care, population-based services, transitioning to adult healthcare providers, and family engagement.

The goal of the Care Coordination Model is to assure that all involved providers, institutions, CYSHCN, and families/caregivers have the information and resources needed to optimize care and improve the quality of life for CYSHCN. The Care Model for Child Health integrates the medical home concept with the Chronic Care Model (CCM), developed by Ed Wagner. The CCM is a picture and description of an ideal system of healthcare for chronic conditions. Consisting of six essential components, the model can also be applied to preventive health. The Model for Improvement is a strategy for testing, implementing, and spreading practice innovations which includes the use of plan-do-study-act (PDSA) cycles or rapid cycle improvement.

Throughout this quality improvement initiative, multidisciplinary teams interact with other multidisciplinary teams and the CYSHCN Leadership Team via learning sessions, emails, and webinars/conference calls. Healthcare systems/teams assess and report on meeting the required measures for CYSHCN Cares 2. Plans are to recruit additional healthcare systems in FY2020.

Developing the Curriculum

 

The CYSHCN Program established a care coordination learning collaborative to enhance care coordination within patient/family-centered medical/dental homes for CYSHCN. This learning collaborative, entitled as “CYSHCN Cares 2,” utilizes the Care Coordination Model, Care Model for Child Health, and Model for Improvement to re-design and advance healthcare systems’ practices. The CYSHCN Program updated a Request for Proposal (RFP) developed by the MSDH Office of Adolescent and Child Health’s Pediatric Consultant entitled “Innovative Pilot Programs.  The CYSHCN Program Director and CYSHCN Cares 2 Learning Collaborative Consultant, BC3 Technologies LLC., led the document review and noted revisions.  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.   Furthermore, BC3T, LLC has demonstrated the experience and expertise in planning, organizing, facilitating and addressing the challenges that arise in clinical practice where 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.

At the first leadership team meeting on September 11, 2018, the CYSHCN Leadership Team provided invaluable feedback and agreed to brand the learning collaborative and RFP as “CYSHCN Cares 2.”  The CYSHCN Leadership Team also assisted with finalizing the following documents:

RFP Scoring Tool, Notice of Award letter, CYSHCN Cares 2 Potential Grantees Q&A Informational Sheet, Pre-Work Manual, Kick-Off Meeting Agenda, two (2) Learning Session Agendas, CYSHCN Program and Partnerships’ Services Fact Sheet, CYSHCN Cares 2 Parent Consultants and Care Coordinators scopes of work and Orientation Guide, and the CYSHCN Parents’ and Families’ Caregivers Guide, letters and Parent Consultants’ Telephone Verbiage Script.  The aforementioned documents and newly created documents will be utilized by Cohort II healthcare systems in FY 2020.  (CYSHCN Appendix A)

Activity 1c:  Recruit healthcare systems providing care to CYSHCNs to participate in the learning                                           collaborative.  Healthcare systems will provide a roster of a multidisciplinary team which                             includes a CYSHCN parent consultant and care coordinator.

Report Activity 1c:

The purpose of CYSHCN Cares 2 is to enhance care coordination within family-centered medical/dental homes for CYSHCN. More specifically, CYSHCN Cares 2 promotes team-based care, population-based services, transitioning to adult healthcare providers, and family engagement.  Five healthcare systems submitted proposals for the CYSHCN Cares 2 Grant.  The CYSHCN Program selected an unbiased panel to rank the proposals.  Three proposals were selected and two were asked to provide additional information. Eventually, all five healthcare systems (4 FQHCs –Mallory, Aaron E. Henry, Family Health Center, and Coastal and 1 rural health clinic/hospital-Rush Health System-Family Medical Clinic) were awarded.  According to self-reported data in the healthcare systems’ grant applications, the potential reach is approximately 56,818 Children with and without special healthcare needs at 58 clinic sites in 15 of 82 counties in Mississippi.  The aforementioned healthcare systems provided patient demographics, their total pediatric population, and a subpopulation of CYSHCN to verify the operability of their electronic health records.  Each healthcare system had to establish a multidisciplinary team (senior leader/CEO, provider champion, team leader, technical support or data analyst, care coordinator/social worker, and CYSHCN parent consultant/Community Health Workers (CHW) and document the names, disciplines, and contact information on a team roster. To ensure that the CYSHCN parent/caregiver has a voice, the CYSHCN Program included stipulations that each awardee will hire a care coordinator equivalent to a Social Worker III and CYSHCN Parent Consultant/CHW.  A roster is utilized to communicate with the teams.

Activity 1d:  Conduct a needs assessment with healthcare systems for care coordination and                                                         continuing care coordination engagement.  

Report Activity 1d: 

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

 

	Level 1 n (%)	Level 2 Partial n (%)	Level 2 Complete n (%)	Level 3 Partial n (%)	Level 3 Complete n (%)
#1 Family Feedback		3 (100.0%)
#2 Cultural Competence		2  ( 66.7%)	1 (33.3%)
#3 Identification of Children in the Practice with Special Healthcare Needs				3 (100.0%)
#4 Care Continuity		3 (100.0%)
#5 Cooperative Management between Primary Care Provider and Specialist		2   (66.7%)		1 (33.3%)
#6 Supporting the Transition to Adulthood		3 (100.0%)
#7 Care Coordination / Role Definition		3 (100.0%)
#8 Assessment of Needs / Plans of Care		3 (100.0%)
#9 Community Assessment of Needs for CYSHCN	1 (33.3%)	1   (33.3%)	1 (33.3%)
#10 Quality Standards (Structures)	1 (33.3%)	1   (33.3%)	1 (33.3%)

 

Results from Medical Home Index Assessment (n=3)

The Medical Home Assessment allows our healthcare organizations to identify opportunities for improvement related to providing sustainable CYSHCN Care Services. The healthcare organizations are using the Medical Home Index Assessment to align the Care Coordination Model and Care Model for Home Health to conduct PDSAs around the indicators that can be improved through implementation of policies, surveys, templates, and protocols per the components of the model.  The CYSHCN Program provides additional support by identifying additional trainings, documents, and support for improving level 1 scores. (CYSHCN Appendix B)

CYSHCN Cares 2 Focus Groups

Focus groups were conducted in person or virtually through GoToMeeting with each of the five CYSHCN Cares 2 healthcare Systems’ teams from February 20, 2019 to March 4, 2019.  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. Most organizations were well represented during the focus groups. The number of participants in the groups ranged from two (Family Medical Center and Mallory Community Center) to entire teams of 5-7 people depending on whether they had filled the two positions for a care coordinator and parent consultant.

Perception of CYSHCN Clients

The overall perception is that CYSHCN clients have substantial medical needs and are often one step away from needing crisis level medical care. When asked this question, those that responded did so with a specific (severe) diagnosis. Many have not identified their population of focus, and to identify a population of focus with a severe (but rarely occurring) disease, may have less impact than if they worked with a population of focus that could benefit from behavioral strategies, education, or improved care coordination. After explaining that diagnoses can include common diseases (asthma, ADHD, etc.), the participants indicated that they may not know who would be considered a CYSHCN.

Resources

Another theme that surfaced was a lack of resources for CYSHCN in general. One of the clinics already serves a large population base of CYSHCN and reported that they would benefit from additional educational resources for this population, but that they felt comfortable providing services to the population and recognized the challenge of care coordination. 

The CYSHCN Program has been creating and identifying resources for the Care Coordinators and Parent Consultants to share with patients, families, and caregivers. Also, the program has created a partnership page to share with the healthcare systems for additional resources.

 

CYSHCN Parent Consultant

 

One clinic reported that they identified a CYSHCN Parent Consultant and hired them; however, the person identified was a manager at another site. The independent evaluator asked if the parent consultant’s role would be too much to add to her current position since we are requesting them to devote 20 hours per week to the scope of work.  The participant stated that everyone does “double duty” at the organization and she was qualified for the role because she has a child with ADHD.  Other clinics identified an applicant pool and began the interview process. One clinic was in the final stages of hiring. When asked about potential concerns, most could not foresee any issues or barriers. One expressed concern about office space to accommodate the parent consultant, but stated that they were “working it out”. One stated that having a Parent Consultant would be a new experience for the group, but that they knew they would be successful in integrating the position into their organization. ( CYSHCN Appendix C) for the full report.  Additional trainings have been implemented to standardize the roles and responsibilities of the Parent Consultant.  The MSDH CYSHCN Parent Consultant provides administrative support and guidance to the healthcare systems’ parent consultants.

Activity 1e:  Increase awareness of the care coordination services provided by the CYSHCN Program                                           to internal and external partners, CYSHCN and families, and healthcare providers.

Report Activity 1e:

Visibility has increased significantly for the CYSHCN Program in 2018-2019. The staff has been putting forth efforts to rebrand the CYSHCN program by presenting the program’s strategic direction and challenges with care coordination services at via staff meetings, community events, and conferences.  Also, the Program has expanded its diagnoses list to include with chronic physical, developmental, behavioral, emotional conditions.

Weekly updates are provided internally to the Mississippi State Department of Health’s State Health Officer and Office Directors on key strategies and activities implemented by the CYSHCN Program. Also, the CYSHCN Nurse and LSW/Division Director II presented to the Maternal and Child Health nurses and at the strategic planning meeting to all Office of Child and Adolescent Health Staff.  The CYSHCN Program and Genetic Services co-facilitate a monthly conference call with the MSDH Regional Care Coordinators to keep them abreast of the most recent updates and provide professional enrichment opportunities.

During the inauguration of the CYSHCN Leadership Team, the CYSHCN Program Director and independent evaluator presented the data and challenges of segmented care coordination services.  Presentations depicted the need for partners collaborating and maximizing resources to improve the quality of life for CYSHCN. 

In January 2019, the CYSHCN Program staff presented at the CYSHCN Cares 2 Kickoff meeting to gain buy-in from senior leaders (Chief Executive Officers/Executive Directors, Chief Operating Officers, Chief Medical Officers, Chief Financial Officers, Nurses and Social Workers) at FQHCs.  Forty-six participants attended the CYSHCN Cares 2 Kickoff Meeting, 27 senior leaders from healthcare systems, 12 CYSHCN Leadership Team members, and 5 team support members. Based upon the feedback received, the information shared was well received and we gained their buy-in. After the kickoff meeting, some providers offered the suggestion to include additional diagnoses to capture more CYSHCN patients.

March 4-5, 2019, the CYSHCN Program utilized a variety of learning formats to train Regional Care Coordinators (RCC) at the Bi-Annual RCC staff meeting.  The Office of Health Services Chief Nurse Consultant presented and facilitated a round table discussion on care coordination.   To further embed the importance of coordinated care for CYSHCN, the program designed CYSHCN Jeopardy.  Topics included diagnoses, interventions, miscellaneous, genetics, and direction of healthcare.  The RCCs divided into three teams and stated the questions as answers were presented during the game.  All teams scored very well but more importantly; it was a peer-to-peer learning opportunity.  Evaluation results are included in the CYSHCN Appendix D.

CYSHCN Independent Evaluator submitted an abstract titled, "Improving Care Coordination for Children and Youth with Special Health Care Needs: Evaluation of The CYSHCN Cares 2 Initiative" to the American Public Health Association (APHA) 2019 Annual Meeting & Expo in Philadelphia.  The abstract was accepted and scheduled to be presented at the "Care Coordination, Medication Adherence, and Developmental Monitoring for CSHCN." The annual meeting is designed to bring together public health professionals who wish to learn from the experts in the field and hear about cutting edge research.

The CYSHCN Director presented "Linkage to Services and Care Coordination" at the Genetics Training on May 22, 2019.  The training was recorded and footage may be broadcasted on television. 

The CYSHCN Director and Parent Consultant, Natasha James presented "From Parents to Partners in a breakout session Annual 2019 Mega DisAbility Conference in June 2019.  The CYSHCN Director presented on the strategies the program is currently implementing and the parent consultant discusses plans to increase parent engagement statewide.

In June 2019, The CYSHCN Program staff established a vendor booth at the Fondren after 5 to raise awareness of mental health month among CYSHCN and families.  Information was disseminated to approximately 20 families and caregivers.  Staff printed sign-in sheets to collect email addresses for continued communication with families. The Mayor of Jackson and CYSHCN Program staff took a picture together during the event.

The CYSHCN Director is confirmed to present in a panel presentation during the session entitled “What’s Working with Population Health Programs & Initiatives” and discuss the CYSHCN Cares 2 learning collaborative at the Community Health Center Association of Mississippi (CHCAMS) conference.  The conference is scheduled for July 30th – August 2nd in Biloxi, MS and the theme is “Advancing Population Health: Community Health Centers Leading the Charge.   Also, the CYSHCN Director was granted a breakout session at the CHCAMS conference for the MSDH Pediatric Consultant to present on the "Essentials for a Healthy Childhood: A Life course Approach to Clinical Prevention."

The CYSHCN Program Director will participate in a panel presentation during the session entitled “What’s Working with Population Health Programs & Initiatives” and discuss the CYSHCN Cares 2 learning collaborative.  The panel discussion will occur on Thursday, August 1st between 9:30-11:30A.

The CYSHCN Program Director will present at the Mississippi Oral Health Community Alliance’s (MOHCA) 1st annual Oral Health Summit in September 2019.

Activity 1f: Conduct focus groups with CYSHCN and families to pilot the Shared Plan of Care.

Report Activity 1f:  

The CYSHCN Program created the CYSHCN Families’ and Caregivers’ Guide which includes an Emergency Plan, Transition Plan, and Shared Plan of Care.  Parent consultants, RCCs, and the CYSHCN Leadership Project Team reviewed the guide.  The program received the guide in June 2019 for dissemination.   An electronic copy was also created and will be posted on the MSDH Children and Youth with Special Health Care Needs webpage in the near future.

 

Activity 1g:  Provide training to CYSHCN Program staff and healthcare providers to deliver quality services to the CYSHCN population

Report Activity 1g:

Bi-Annual Regional Care Coordinators Training: 

(October 2-3, 2018) The CYSHCN Program and Genetic Services co-facilitated a training session on Transitioning Phases, Cultural Competency and Individual Education Program (IEP). During this interactive training, RCCs worked on short-term and long-term case studies.  Genetics/CYSCHN staff provided a refresher documentation training on completing Intake Assessments.  The staff also presented the CYSHCN Database Manual to the RCCs and revealed the new CYSHCN database.

The CYSHCN Data Analyst and Independent Consultant developed an evaluation report.  Eighteen evaluations were collected and analyzed.  Overall the survey responses reflected that the care coordinators thought positively of the information presented.  Ideas were raised for the program’s improvement, such as:

• Presenting more information on diseases and chronic medical conditions
• Utilizing open forums within the Care Coordinator meetings in the future
• Incorporating additional fields within the new database.

All suggestions were enacted upon in the Spring RCCs Training.  The program made some of the recommended changes to the database and others will be considered in FY2020.

Bi-Annual Regional Care Coordinators Training:

(March 5-6, 2019) The training consisted of sessions on Genetic Updates, Understanding Care Coordination, and Toxic Stress.  Plans were to give the RCCs hands on training on the CYSHCN Database but there were some technical issues.  The hands on training on the CYSHCN Database occurred on March 29, 2019.

To determine knowledge gained during the staff development meeting, a pre-test was administered prior to the beginning of the session, and a post-test was administered at the end of the session. Eight participants completed the pre-test, and nine participants completed the post-test. The following results were provided:

The Regional Care Coordinator’s Staff Meeting was effective in improving knowledge, awareness, and/or understanding across four of the five subject areas. Participants came into the meeting with high levels of knowledge in two of the five subject areas. Participants had the largest awareness increase in the area of the National Quality Forum Framework. All participants (100.0%) entered training with a good understanding of the components of a shared plan of care.

Overall, 62.5% of participants (n=5), rated the Genetics / CYSHCN Regional Care Coordinators’ Meeting as ‘Very High,’ and 37.5% (n=3) rated the meeting as ‘Above Average’. Fifty percent (50.0%) of participants (n=4) rated the organization of the Genetics / CYSHCN Regional Care Coordinators’ Meeting as ‘Very Organized,’ and 50.0% of participants (n=4) rated the meeting as ‘Organized’. Seventy-five (75.0%) of participants (n=6) rated the staff at the Genetics / CYSHCN Regional Care Coordinators’ Meeting as ‘Very Helpful,’ and 25.0% of participants (n=2) rated the staff as ‘Helpful’. The participants were in agreement about their rating of the length of the meeting. All participants (100.0%, n=8) thought the meeting length was ‘about right.’ The Chief Nurse Consultant presented a session on “Understanding Care Coordination.” Among participants, 62.5% (n=5) rated the session as ‘Very High,’ and 37.5% (n=3) rated the session as ‘Above Average.’ All respondents rated the information provided in the session as either ‘Very Helpful’ (75.0%, n=6) or ‘Helpful’ (25.0%, n=2). Roundtable discussions were held on the second meeting day (March 6, 2019). All participants rated the sessions overall as ‘Very High’ (62.5%, n=5) or ‘Above Average’ (37.5%, n=3). All rated the information provided in the session as either ‘Very Helpful’ (62.5%, n=5) or ‘Helpful’ (37.5%, n=3).  (CYSHCN Appendix D)

Provider Training:  “What’s New in Sickle Cell”

The University of Mississippi Medical Center’s, Drs. Melissa McNaul and Gail Megason, conducted six (6) provider training sessions to increase provider knowledge of new innovations in the care management and treatement of Sickle Cell Disease. Sessions were conducted from January 16, 2019 – February 21, 2019 and were attended by 91 healthcare providers. An evaluation was conducted to determine participants’ perceptions of knowledge gained, utility of information provided, and whether or not personal and session objectives were met. Further, participants’ satisfaction with meeting logistics was evaluated.

Of the 91 providers in attendance, 41 completed the post-session professional education evaluation. Thirty-eight participants provided information about their professional credentialing. The participants identified as physicians (n=6, 15.8%), Nurse Practitioners (n=8, 21.1%), nurses including RN-BCs, RNs, and LPNs (n=19, 50.0%), Medical Assistants (n=4, 10.5%), or Lab Personnel (n=1, 2.6%). Overall, the participants who attended the provider training were well pleased with the sessions. When asked to provide an overall rating of the session, most participants (36 of 40, 90.0%) rated the session as ‘excellent’, and 4 (10.0%) rated the session as ‘good’.  When asked about the meeting length, almost all respondents (41 of 42 participants, 97.6%) found the meeting length neither ‘too long’ nor ‘too short’, but ‘about right’ in length. Further, no participants ‘detected any commercial bias in favor or against a specific product’ (n=39, 100.0%).

Participants were asked to identify the area of content that was most meaningful to them. Approximately half of the survey participants provided a response. Many responded with very positive comments such as “Everything” or “All of it”. Other content topics that participants found meaningful were the discussion of new studies, the education provided on management and treatment of Sickle Cell patients, the education provided on the difference in strategies to treat acute versus chronic pain in the patient with sickle cell disease. The evaluation provided space for participants to suggest future topics for provider education. One participant suggested that there was a need for provider education surrounding cardiovascular disease in pediatric patients. (CYSHCN Appendix E)

 

Activity 1h:  Provide training to CYSHCN and their families.

Report Activity 1h: 

CYSHCN Parent Consultants/Community Health Worker Training:

The CYSHCN Program identified the need to provide foundational training to the MSDH Parent consultant and the parent consultants recently hired by healthcare systems participating in the CYSHCN Cares 2, an initiative to improve coordinated care and family engagement.  The roles and responsibilities of the parent consultants are invaluable and aligns with the characteristics of a Community Health Worker (CHW). Considering that the integration of Community Health Workers in healthcare systems has emerged as a promising practice, coupled with an opportunity to develop the workforce, made this a viable option. 

A Core Skills in Outreach and Capacity Building Training was conducted in Jackson, Mississippi, on May 20-23, 2019.   The conducted training was designed for Community Health Workers (CHWs) and incorporates a training design that differs from most CHW training models. In most CHW training models, an integrative disease specific curriculum is developed and implemented with identified recruits. However, little attention is paid to core skills necessary to be effective in outreach; outreach skills are assumed. CHW skill competencies identified included: communication skills, knowledge base, capacity-building skills, interpersonal skills, service coordination skills, teaching skills, advocacy skills, and organizational skills.

The core skills training that was implemented was developed by CHWs in a variety of content areas across the nation. In addition, CHW methodologies that can be used in individual, family, and group settings were demonstrated. Fundamental to its design are concepts of popular education and adult learning (Matos & Mayfield-Johnson, 2010; Mayfield-Johnson, 2011; Ruiz, Matos, Kapadia, Islam, Cusack, Kwong & Trinh-Shevrin, 2012; Story, Mayfield-Johnson, Downey, Anderson-Lewis, Young, & Day, 2010). Parent consultants that participated in the training conduct outreach, home visit, and group education, and can be considered CHWs along the CHW continuum. There were 12 participants in the training, and one individual, missed the second and fourth day. As a result, her evaluation is not included. Below is a summary:

Knowledge of CHW skills 9; New methods that can be used for application 1; Ideas and techniques that can be applied on the job 11; Other: 1- Clear and concise understanding of my role 1-tools that be modified to fit a few of my job tasks.  (CYSHCN Appendix F)

CYSHCN Parent to Parent Support Networking

 On June 19, 2019, sixty percent (60%) of the parent consultants hired by the five (5) healthcare systems attended the CYSHCN Cares 2 Pre-Learning Session entitled CYSHCN Parent to Parent Support Networking.  The purpose of the sessions is to continue building upon the CHW training and customizing a training for parents as they engage with other CYSHCN parents/caregivers. This interactive training was led by the Families as Allies of Mississippi and the parent consultants learned about the following:

• Family Driven System of Care
• System of Care and Parent Peer Support
• Family Driven Peer Support

One parent consultant did not attend because of technical issues with the healthcare system’s emails.  No explanation was provided by the other parent consultant. 

Evaluation results indicated that participants learned when to share their lived experience; the importance of family driven care and how to keep on track for patients’ benefits.  The strategies taught could help peers feel comfortable serving in leadership roles.  Furthermore, participants thought the training would work for anyone else who may come into a child’s life as a person who makes decisions.  These trainings will be optional for care coordinators to attend in FY2020.                      

Strategy 2: Enhance communication and access to information among healthcare providers, CYSHCN and their families.

Rationale Strategy 2:

According to the Joint Principles of the Patient Centered Medical Home, care is coordinated and integrated across all elements of the complex healthcare system and the patient’s community.  Care is facilitated by registries, information technology, health information exchange, and other means to assure that patients get the indicated care when they need it in a culturally and linguistically appropriate manner. Strategy 2 aligns with the Standards for Systems of care for Children and Youth with Special Health Care Needs Version 2.0: System Domain Community-Based Services and Supports, Accessibility to services, Families and CYSHCNs get the services they need. 

Activity 2a: Conduct assessment among healthcare systems to determine if electronic health                                           records (EHR) will support optimal patient care for CYSHCN, education, and                                                         communication via a patient portal.

Report Activity 2a:

An EHR Assessment was done for all 5 of the healthcare organizations. Based on the assessment the following was found during the assessment:

• 4/5=80% of the organizations have a certified EHR system.
• 3/5 = 60% of the health care organization are looking to transition or in process of transitioning to a new EHR in 2019: 1 of the health care organizations transitioned to a new EHR in Oct 2018; 1 healthcare organization transitioned to a new EHR in May 2019; 1 healthcare organization will be transitioning to a new EHR in October 2019.
• 5/5= 100% of the healthcare organizations are sending prescriptions electronically.
• 5/5 =100% of the healthcare organizations are using their EHR for clinical decision support such as alerts for drug allergies, and drug-drug interactions.
• 3/5= 60% of the healthcare organizations are exchanging clinical information electronically with other key providers/ healthcare settings such as hospitals, emergency rooms, or subspecialty clinicians.
• 5/5= 100% of the healthcare organizations engage patients through health IS such as patient portals, kiosk, secure messaging through the EHR or through other technologies.

Although the EHR assessment was done for all of the CYSHCN Cares 2 healthcare systems, they are still experiencing challenges with capturing data electronically for the dental measure, shared plan of care, and the transition to adult measures.  Most of the healthcare systems are manually extracting data from the EHR.  The CYSHCN Program and CYSHCN Cares 2 Consultant continue to work with them on best practices, templates, coding, and data reports to capture the required measures.  The CYSHCN measures are new to all healthcare systems although they have been providing services for the CYSHCN population.  By being in the CYSHCN Cares 2 initiative, we have brought awareness to the challenges of capturing CYSHCN data and the best practices.

Activity 2b: Provide healthcare systems with EHR training and guidance.

Report Activity 2b:

The healthcare systems were provided EHR training and guidance based on request, need, or missing data from measures. The CYSHCN Cares 2 Consultant met with each organization to discuss their EHR needs. Through these meetings or site visits, the consultant joined calls with the clinical teams’ EHR vendor, assisted with running reports, and provided insight on EHR transition and implementation. This will be an ongoing process in CYSHCN Cares 2 until all of our healthcare systems are able to report on all required measures.

Activity 2c:  Collect data from healthcare systems to support care coordination, i.e., shared plans of care, bi-directional referrals and transition of care for youth with special health care needs to adult medical care.

Report Activity 2c: 

As the CYSHCN Cares 2 is initiated, awarded healthcare systems will submit data reports to the CYSHCN Program.  Qualitative and quantitative methods will be utilized to evaluate CYSHCN Cares 2.

Five healthcare systems are currently participating in the CARES 2 Learning Collaborative. The systems prepare a quarterly report that collects information on implementing best practices for CYSHCN providers. The systems identify a population of focus with which to conduct a Plan, Do, Study, Act cycle in order to improve the system of care providing CYSHCN services. Of the five systems, three were able to collect data for the required reporting measures. The fourth is currently experiencing difficulty with their electronic health record, and the fifth is exhibiting a lack of engagement due to competing priorities for time and resources.

Healthcare systems provide data on the following required measures:

• Increase the proportion of children with special health care needs who have access to a medical home (MICH-30.2/HP2020).
  • Percent of children age 0-21 with special health care needs receiving care in a medical home (MICH-30.2/HP2020).
  • Percent of children age 0-21 receiving developmental screenings (Health Maintenance/Bright Futures/EPSDT).
  • Percent of children age 0-21 with special health care needs receiving care in a dental home.
  • Percent of children age 0-21 with special health care needs referred for annual dental visits.
• Increase use of team-based care with health systems (i.e. nurses, social workers, specialists, and care coordinators/parent consultants-community health workers.
  • Percent of children age 0-21 with special health care needs who receive their care in family-centered, comprehensive, and coordinated systems (MICH -31.2/HP2020).
• Increase the number of children with special health care needs transitioning from pediatric to adult healthcare (DH-5).
  • Percent of children age 0-17 and youth18-21 with special health care needs who talked to the healthcare team about the special health care need, as he or she becomes an adult. (DH-5)
  • Percent of children age 0-17 and youth 18-21 who health care team has encouraged them to become more independent in managing the special health care need (DH-5).
• Increase family engagement.
  • Percent of children age 0-21 with special health care needs who have a shared care plan documented in the EHR.

For the three systems that provided data, the populations of focus include CYSHCN with a diagnosis of Asthma, ADHD, Autism, Sickle Cell, or Obesity. The combined population of focus (POF) consists of 677 CYSHCN of which 669 (98.8%) are ages birth – 17 years old, 0.2% are ages 18 – 21 years old. The teams report that 100% of these CYSHCN are receiving care in a medical home (MICH30.2/HP2020), and 9.5% are receiving care in a dental home. Approximately 1 in 5 (18.3%) have received developmental monitoring and screening (Health Maintenance/Bright Futures/EPSDT). More than half (56.1%) have a shared plan of care document in their EHR.

One health care center is tracking their population of 12-17 years of ages so that they can establish plans for transition when it is age appropriate. There are 75 identified CYSHCN in this age range. All (100%) have talked to their healthcare team about their special health care need, and all (100%) have been encouraged by their health care team to become more independent in managing their special healthcare need.  

The healthcare systems are experiencing some challenges capturing data electronically for the dental measure, shared care plan, and the transition to adult measures. We are working with them on best practices, templates, and workflow-redesign to capture the required measures.

 

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

Report Activity 2d:

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.

Learning Session I

The CYSHCN Cares 2 Session I was held on March 7, 2019 from 3:00 – 8:00 PM at the Holiday Inn-Trustmark Park in Pearl, MS. All five multidisciplinary teams of awarded healthcare systems were in attendance. In order to determine knowledge gained during the Learning Collaborative 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. Twenty-four participants completed both the pre- and post- test and provided the following results:

The Learning Collaborative Session was effective in improving knowledge, awareness, or understanding across all six subject areas. Two –thirds of participants (66.7%) had an improvement of understanding or knowledge in four or more subject areas. Participants had the largest awareness increase in the area of national models of care and care coordination that represent best practices for CYSHCN. Most participants (87.5%) entered training with a good understanding of the importance of early and continual screening for children who might have special health care needs. Approximately 12.5% lacked confidence in their organization’s ability to provide data related to the required reporting measures.

Overall, 83.3% of participants (n=20), rated the CYSHCN Cares 2 Learning Collaborative Session as ‘Very High’ or ‘Above Average’. 95.8% of participants (n=23) rated the organization of the CYSHCN Cares 2 Learning Collaborative Session as ‘Very Organized’ or ‘Organized’. Approximately 91.7% of participants (n=22) rated the staff at the CYSHCN Cares 2 Learning Collaborative Session as ‘Very Helpful’ or ‘Helpful’. The participants were divided about their rating of the length of the meeting. More than half of participants (56.5%) thought the meeting length was ‘about right’, and 43.5% felt the meeting was ‘too long’ or ‘much too long’.  Fifteen participants commented on what they took away as the biggest strength of the meeting on full evaluation summary in CYSHCN Appendix F.

Learning Session II:

The CYSHCN Cares 2 Learning Session II was held on June 20, 2019 from 8:30 – 5:00 PM at the Holiday Inn-Trustmark Park in Pearl, MS. All five multidisciplinary teams of awarded healthcare systems were in attendance.  In order to determine knowledge gained during the Learning Collaborative 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. Twenty participants completed both the pre- and post- test and provided the following results: The Learning Session was effective in improving knowledge, awareness, or understanding across the twelve topics assessed.

• Participants had the largest awareness increase in the area of statistics specific to MS CYSHCN.
• Most participants entered training with a high level of confidence to initiate appropriate interactions with CYSHCN clients and their caregivers.
• Most participants also acknowledged the importance of a medical home (89.5%) and mental health/depression screening (100.0%) for the CYSHCN population.
• Most were also familiar with the oral hygiene and dental health needs of the CYSHCN population (80.0%).
• Approximately 15.0% lacked confidence in their organization’s ability to provide data related to the required reporting measures (12.5% at LS1).

One of the challenges with the CYSHCN Cares 2 is that the grantees view this initiative as a program instead of the standards of care. Just as the provider may refer patients to social services for prescription assistance or other services, the same should occur for CYSHCN patients. To provide additional guidance to the healthcare systems, a skit performed by the central office CYSHCN staff depicting the following:

• Multidisciplinary team huddle which included a parent consultant.
• Provider diagnosing and referring a CYSHCN patient and caregiver to the social worker/care coordinator for services.
• The healthcare system’s parent consultant following up with the patient/caregiver to confirm if their needs were met or if additional support was needed.
• The Parent Consultant and Care Coordinator planning and inviting CYSHCN patients and caregivers to a family engagement summit.

Some remarked that they will incorporate the information gained from the skit, presentations, and the CYSHCN Families and Caregivers’ Guide into their processes. Project planning and choosing the subject of their PDSA was discussed. A reminder for reporting parameters was given. Continued education credits were offered and the full evaluation is included in CYSHCN Appendix G.

 

Activity 2e:  Facilitate quality improvement activities with multidisciplinary teams which include a                                           CYSHCN parent consultant and care coordinator.

Report Activity 2e:

Another name for a cycle of a change is structured trial, which includes four phases: Plan, Do, Study, and Act. The PDSA cycle will naturally lead to the “plan” component of a subsequent cycle.

Time is allotted on the agenda at the CYSHCN Cares 2 Learning Sessions for the multidisciplinary teams to identify PDSAs to conduct within their organization.  .The multidisciplinary teams return to their organizations and meet regularly to test and study the changes for implementation.  They present the PDSA results in a storyboard presentation at the next learning session. The CYSHCN Cares 2 Consultant provides guidance and support as needed during monthly conference calls/webinars.

Activity 2f:  Link CYSHCN healthcare providers with access to partners who provide community-                                          based services and support.  

Report Activity 2f:

The CYSHCN Program and Partnerships’ Services Fact Sheet and contact information to Help Me Grow at the Mississippi Access of Care (MAC) Center was provided to the healthcare systems and RCCs.  Also, important contact information was included in the CYSHCN Parents’ and Families’ Caregivers Guide.  This guide will be electronically distributed to the healthcare systems in early July 2019.  Hard copies may be provided based upon availability.

Activity 2g:  Develop a CYSHCN database to enhance care coordination.

Report Activity 2g:

The CYSHCN database was developed and tested by the program’s staff.  Technical issues were identified and are currently being resolved by transitioning to a web-based program.  Internet connectivity and speed was tested by the Program’s technical support team.  The CYSHCN Program developed a training manual and revealed the database and manual to the regional care coordinators at the RCC’s Bi-Annual meeting in March 2019.  The RCCs had an opportunity to enter an intake assessment into the database during the test phase.

Activity 2h:  Establish or identify a central resource portal to link CYSHCNs to services and resources.

Report Activity 2h:

Currently CYSHCN Cares 2 documents are temporarily stored on One Drive for clinical teams to review, download, and print.  Some of the documents are PowerPoints, agendas, team rosters and other forms.  However, the CYSHCN Program will strive to establish an online resource portal in FY2020 for healthcare systems to submit monthly data, compare state data with other CYSHCN Cares 2 sub-grantees on the dashboard, share documents, have virtual discussions, register for Learning Sessions, upload monthly and quarterly narrative reports and invoices. The online resource center will be developed and tested in phases.

Activity 2i:  Develop a quality assurance protocol to ensure that CYSHCN services are being delivered according to protocol..

Report Activity 2i:

 

CYSHCN Program drafted quality assurance forms to follow up with CYSHCN and assess their satisfaction.  Also, plans are to assess RCCs to ascertain their perception of Care Coordination, provide more care coordination trainings based upon assessment results, draft a specific scope for RCCs, develop a tier system for phone, home and clinic encounters with CYSHCN families and caregivers, revise the monthly reporting template to include a narrative description of monthly activities, and ensure that the monthly reports better align with calendar and travel training requests.

The CYSHCN Nurse facilitated a QI/QA meeting on October 24, 2018 with the CYSHCN Director, Data Manager, contract Social Worker, and Independent Evaluator.  The purpose of this initiative is to provide RCC with the protocols and tools to heighten their performance of care coordination duties for CYSHCN.   Plans are to tie the patient record key numbers on the reporting templates with the RCCs calendars and Travel Reimbursement Reports. 

The CYSHCN Program also trained the RCCs on database usage, gave them copies of their caseloads, and provided Professional Development sessions with more emphasis on care coordination.

June 18, 2019, The CYSHCN Central Staff conducted on-site visits to Batesville and Greenwood MS with the Regional Care Coordinators (RCC) in those respective areas. One hundred percent (100 %) of the staff attended (5 of 5). These visits consisted of reviewing their process, need for resources, caseloads, documentation, and HIPAA compliance. Information was provided on the three-tier approach, maintaining files for back up, consent/release of information forms, caregiver letters, call and activity logs, and the Parent/Caregivers’ Guide. Positive comments were given on all the documents introduced. The staff was very interested in being able to incorporate them into their job. Time was allotted for concerns, successes, and suggestions. The team members appeared to like and respect each other and share a common desire to assist those in our program. There was some minor hesitation at times when the teams were talking; but overall, the RCCs were open to sitting down and sharing with the Central Office CYSHCN staff. A concern was that it appeared that the RCCs who were Nurses tended to focus mainly on Genetics and the RCCs who were Social Workers focused on CYSHCN. While it appeared to be agreeable to both disciplines, Central Office CYSHCN staff discussed the job description being very similar except for heel sticks. The Central Office CYSHCN staff advocated for patients needing guidance from both disciplines, but also was empathetic to the nurse shortage in the regions.  

Strategy 3: Increase Community Based Services and Support for CYSHCN and Families.

Rationale Strategy 3: A well-functioning system of services will coordinate and integrate the full range of needed child and family services, including health care, education, and social services, with the goal of optimizing outcomes for the children and families it serves. Seamless communication among the providers of services and with the family is a critical component of a system of services. Because families typically provide most of the supportive care needed by their children and know their children best, families must be involved in decision making at all levels; family partnership is an integral aspect of the system of services for families of CYSHCN.

Activity 3a:  Convene the Office of Child and Health Adolescent Health programs and partners for                                           Strategic Planning meeting to maximize collaborations among partners. 

Report Activity 3a:

Convene the Office of Child and Health Adolescent Health programs and partners for Strategic Planning meeting to maximize collaborations among partners. 

The Child and Adolescent Health Strategic Planning Meeting occurred in three phases. The initial phase engaged the CAH Directors only to discuss Strengths, Weaknesses, Opportunities and Threats (SWOT) analysis.  The Strategic Planning Meeting’s co-facilitators, Fastring Evaluation Consulting, LLC and SHARED Strategy Group, met with the Directors and Epi/Evaluation staff on January 18, 2019 to capture data sources and key indicators for the plan.

Phase II of the Office of Child and Adolescent Health Strategic Planning Meeting was held on March 29, 2019 at the Hilton Garden Inn in Flowood, Mississippi from 10:00 AM – 3:00 PM. In phase II, all CAH staff were invited to provide feedback. Key features were:

• Cooperation between health and social care organizations
• Emphasis on wellness, health promotion, and primary care
• Patient-centered philosophy; focusing on patients’ needs
• Patient engagement and participation
• Commitment to quality of services, evaluation, and continuous care improvement

 

Approximately 76% of the staff rated the meeting ‘Very High’ or ‘Above Average.’  When asked, “What was the most valuable thing you learned from the Child and Adolescent Health Strategic Planning meeting?”  When asked about the “Importance of Working as a Team,” participants noted the benefits from collaboration and sharing resources and being heard; feeling that their input is valuable.  Whereas the challenges identified were that each program may have its own data collection and monitoring plan, funding source, and staff resources for evaluation may be limited.  To overcome the challenges, the following recommendations were made:

• Continue to engage employees and get feedback that can potentially be used to improve the program/services provided.
• Introduce how to manage change when we are faced with doing things differently than we did the last 3, 5 or 10 years with the expectation of a different outcome.
• Discuss the opportunity to identify specific activities where we can work together to provide quality care for clients like a united clinic. Ex. Family Clinics where all programs are represented.
• Offer resources for family strengthening like parenting classes to discuss Mental Health and Child Development.
• Continue to promote teamwork, communication, accountability, cross training and follow-through.
• Satisfaction surveys were disseminated, collected and analyzed. (Evaluation PowerPoint – CYSHCN Appendix J)

Activity 3b:  Finalize the Mississippi Children and Youth with Special Health Care Needs (CYSHCN) State Plan for implementation.  

Report Activity 3b:

Finalize the Mississippi Children and Youth with Special Health Care Needs (CYSHCN) State Plan for implementation.  

Phase III of the Office of Child and Adolescent Health Strategic Planning Meeting was held on April 25, 2019 at the Hilton Garden Inn in Flowood, Mississippi from 9:00 AM – 1:00 PM. The framework has been developed and seven workgroups were established. 

• Cross Program Communication
• Data Collection and Sharing
• Patient Service Delivery Alignment
• Quality Infrastructure for Operations Expansion Workgroup
• Staff Development and Professional Benchmarks
• Lifespan Reporting Workgroup

 

Each workgroup was assigned a leader.  Plans are to continue meeting in FY 2020, asking workgroups to identify short, term, and long-term activities to work on until the state plan is fully executed

Participants in attendance completed a satisfaction survey that captured the overall rating of the meeting, organization, helpfulness of staff, meeting length, location, and facilities. Further open-ended questions were asked which captured the most valuable thing that participants learned from the meeting as well as areas they felt could be improved. Forty participants completed the survey, and following results were obtained.

Overall, the attendees were positive about the Child and Adolescent Health Strategic Planning Meeting with only 6/240 responses on the negative side of any scale (2.5%).

Open Ended Questions

What was the most valuable thing that you learned from the Child and Adolescent Health Strategic Planning Meeting?

24 participants responded to the question

Some of the recurrent themes were:

• The importance of working together toward solutions
• Many common goals across programs
• When different thoughts are brought to the table, it can result in a brilliant plan
• Importance of getting input from all programs
• Many programs have the same concerns and issues
• There is value in learning from one another
• The impact and reach of other programs and partners
• Learning about the different program partners
• Importance of ensuring that work/effort is put toward things that are realistic to achieve
• Satisfaction surveys were disseminated, collected and analyzed.  (CYSHCN Appendix K)

 

Activity 3c:  Continue enrolling children and youth with special health care needs into the CYSHCN Program.

Report Activity 3c:

According to the CYSHCN database, 216 referrals were received. The CYSHCN Program received 525 intakes.  One hundred and forty-nine (149) were initial/renewals.  

• Number of Referrals received: 216
• Number of Intakes received:  525
• Number of Initials received:  149
• Number of Renewals received:  149

Activity 3d:  Pilot CYSHCN family engagement initiative with CYSHCN Parent Consultants to establish a CYSHCN family support groups, provide follow-up with CYSHCN and families, and increase awareness of outreach activities, CYSHCN Services and Medical Homes, community-based services and support.

Report Activity 3d:

The CYSHCN Program partnered with Delta Community Solutions, LLC, and the Aaron E. Henry Community Health Center Services, Inc. to present the Parent and Family Engagement Summit on June 17, 2019.   At this event parents/caregivers were given the opportunity to connect with other families, CYSHCN staff and vendors to receive information about resources, support groups, and various services and supplies, such as an emergency/first-aid kit. 

 There were 8 vendor tables set up and games provided for the children.   The presentations included the               importance of medical homes, transitioning to adulthood, emergency planning (MEMA), initiating a               support group.  Each vendor gave an overview of their organization and the services and resources they               provide.  CYSHCN Care Coordinators assisted caregivers with completing an assessment to identify               children with health care needs and those in need of medical homes, transition planning, and               emergency information.

 At the summit, a care coordination survey was distributed to collect information from CYSHCN               parents/families and caregivers. The results from the survey are summarized below. 

 Data was collected from 13 parents/caregivers, 12 of which regularly provided care for a child with               special health care needs. The children ranged in age from three to 16 (mean 8.5 ±4.3).  Respondents               were asked if they were aware of the resources and services provided by the MS State Department of               Health’s CYSHCN program, and 69.2% of parents/caregivers were aware of the program. Although the               participants were aware of the program, only 16.7% had applied for and received care coordination               from the MSDH CYSHCN program.

 Parents/caregivers were asked to characterize difficulties the child they care for experiences when               compared to other children the same age. Ten participants provided information. The most common               difficulties experienced were in the areas of learning, understanding or paying attention, speaking,               communicating or being understood (70.0%). Forty percent (40.0%) had difficulty with activities of daily               living such as eating, bathing, dressing, and social skills such as making or keeping friends. Ten percent               had difficulty with coordination or moving around. Most parents/caregivers reported that they had               support from someone that could give them a break from caring for their child with a special health care               need (n=9, 81.8%), 91.7% reported having adequate transportation for healthcare visits for their special               needs child.

 In order to determine if children had coordinated care services through a medical home, several               questions were asked with different wording in the event that respondents were unfamiliar with the               term “medical home”. We first asked if the child had a regular primary care provider. Then we asked if a               team of health professionals (which may include a medical provider, pharmacist, social worker, nurse,               etc.) worked together to provide care for the child with special needs. Last, we asked directly if the               special needs child had a medical home. Results were consistent across the three questions in that               75.0% of parents/caregivers answered ‘yes’ to all three questions. 

 To further assess the level of care coordination the child was receiving, we asked if the child had a               dental home, a shared plan of care, an emergency plan, and/or a plan for transition to adult services.               Five children had a dental home (41.7%), whereas 33.3% did not know what the term ‘dental home’               meant. One-third (33.3%) had a shared plan of care, and one-third did not know what a shared plan of               care was. Half had an emergency plan (50.0%), whereas 16.7% did not know what an emergency plan               was. Based on the age of the children, only one child (age 16) should have had a plan for transition, but               his caregiver reported that they did not have a transition plan. 

 Parents/caregivers were asked if they would be interested in participating in a community association or               organization that provided advocacy, education, and leadership around Children and Youth with Special               Health Care Needs. Most (83.3%) would be interested in participating if such a group was started.

 Lastly parents/caregivers were asked about resources or topics that they would like to learn more about               to better care for their child with special needs. The responses include the need for more information               about caring for children with specific diagnoses (ADHD, Cerebral Palsy, and Autism), the need for skill-              based resources such as learning how to cook nutritious meals for obese children, access to mental or               behavioral health care providers, improvement of school-based services, and community activities such               as Type 1 Diabetes summer camps.

To address some of the concerns, the CYSHCN Program will provide healthcare systems and regional care coordinators with the CYSHCN Families’ and Caregivers’ guide.  This document includes a shared plan of care, an emergency plan, and a plan for transitioning to an adult provider.  Furthermore, the program is consulting with Delta Community Solutions, LLC, which is led by a parent of children with special health care needs, to assist parents and caregivers with establishing a support group.  The CYSHCN Cares 2 Healthcare System, Aaron E. Henry Community Health Center Services, LLC. will contact the CYSHCN families and caregivers and complete an intake assessment and provide education and resources. 

CYSHCN Parent and Caregivers Engagement Summit

Satisfaction Survey Evaluation Report

Parents and caregivers who attended the summit were also asked to complete a satisfaction survey that included multiple choice and open-ended questions. The responses from 18 participants that completed the survey are summarized below.

 

The majority of the respondents thought that the most valuable thing learned at summit was about state and local resources for families and their children (6); and, the summit would be more useful to by keeping up the good work and getting the word out to the community (11). Other topics / resources participants would like to learn about or be linked to in future summits were as follows:

(12 responses)

1. Availability of resources (2)
2. Autism help (2)
3. School accommodations for CYSHCN in general (2);
4. and specifically for those with Cerebral Palsy (1)
5. Home safety (1)
6. ADHD (1)
7. Parent’s rights (1)
8. Nutritional health (1)
9. Information from specialists on my child’s specific disability (1)

 

Respondents were asked to rate the accessibility of the facility with regard to ramps, door widths, and signage. Most rated the facility as ‘very good’ (n=12, 66.7%) or ‘good’ (22.2%). A few participants (n=2, 11.1%) rated the facility as ‘neutral’. When asked if any changes could be made to the facility or with logistics of the summit to improve accessibility, most (n=15, 83.3%) said that no improvement was needed. Three people commented that the facility temperature was uncomfortable, the presentation was difficult to view, and there was a need to clearly identify a side entrance.  (See CYSHCN Appendix I)

 

Activity 3e:  Provide respite care services to CYSHCN families.

Report Activity 3e:

According the CYSHCN Database, CYSHCN Program received approximately 192 referrals between 10/01/2018-06/27/2019. Of those referrals, 108 resulted in respite enrollment.  In comparison to 2018 - 2019, there has been a 30% (n=32) increase in respite enrollment.  Twelve (12) CYSHCN families/caregivers declined the services and sixty-five (65) referrals are pending. The CYSHCN Program partners with the MS Chapter of American Academy of Pediatrics, Living Independence for Everyone (LIFE), and Mississippi Families For Kids, Help Me Grow to provide planned or emergency temporary relief to CYSHCN family caregivers.

Activity 3f:  Collaborate with partners to provide CYSHCN with transitioning services.

Report Activity 3f:

The CYSHCN Program has been promoting Transition Policies within the CYSHCN Cares 2 healthcare system.  A question was added to the Quarterly Senior Narrative Report to assess if healthcare systems have a transition policy.   Results indicated that systems could use support with establishing a transition policy. The next steps are to provide samples from the “Got Transition” or from other healthcare systems and promote warm transfers.

Strategy 4: Establish transition plans of care with adult providers for youth and families/caregivers.

Rationale Strategy 4: Strategy 3 is in the initial phase of implementing Standards for Systems of care for Children and Youth with Special Health Care Needs Version 2.0: System Domain Transition to Adulthood:  Youth with special health care needs receive services necessary to make transitions to adult care.

Activity 4a:  Collaborate with Adolescent Health to develop a link to updated resources to offer                                           during transition conversations.  . 

Report Activity 4a:

The Program has been utilizing “Got Transition” as a resource for CYSHCN families and caregivers and clinicians.  As previously mentioned, the CYSHCN Program will provide healthcare systems and regional care coordinators with the CYSHCN Families’ and Caregivers’ guide.  This document includes a shared plan of care, an emergency plan, and a plan for all aspects of transitioning.

Activity 4b: Increase family engagement in decision making and involvement related to the process                                           and development of transition plans for their adolescents and young adults.

Report Activity 4b:

The CYSHCN Program has partnered who increase family engagement activities.  The Mississippi Sickle Cell Foundation recently hosted a Sickle Cell Stars Camp on June 12-15, 2019.  Camp Sickle Stars is the only camp in the state of Mississippi that is exclusively for children with Sickle Cell Disease.  The camp is free to all children between the ages of 6-14 and transportation is available for those who need it. The sign-in sheets and report are pending.

Activity 4c: Offer CYSHCN and families transition trainings to connect with adult primary/specialty                                           providers.

Report Activity 4c:  

No activity to report at this time.

 

 

Evidence Based Measure Reporting (CYSHCN)

 

ESM 1:  Patients with special health care needs receiving care in a medical home (MICH                                                         30.2/HP2020).             

ESM 1 Report:

Mississippi has 21 Federally Qualified Health Centers (FQHC).  Currently 19% (n=4) are participating in the CYSHCN Cares 2 Learning Collaborative.  Also, one rural health clinic/hospital is participating but competing priorities has drastically limited the rural clinic’s staff participation.  Plans are to recruit up to 6 new primary care provider practices in FY2020.  Participating healthcare systems provide patient demographics in the Request for Application (RFA) on children with and without special healthcare needs from birth to 21 years of age.  This data also confirms that awarded healthcare systems are capable of extracting data from the electronic health records.

ESM 2:  Patients who receive their care in family-centered, comprehensive, and coordinated                                           system (MICH 31.2/HP2020).             

ESM 2 Report:

The purpose of CYSHCN Cares 2 is to enhance care coordination within family-centered medical/dental homes for CYSHCN. More specifically, CYSHCN Cares 2 promotes team-based care, population-based services, transitioning to adult healthcare providers, and family engagement.  Five healthcare systems submitted proposals for the CYSHCN Cares 2 Grant.  The CYSHCN Program selected an unbiased panel to rank the proposals.  Three proposals were selected and two were asked to provide additional information. Eventually, all five healthcare systems (4 FQHCs –Mallory, Aaron E. Henry, Family Health Center, and Coastal and 1 rural health clinic/hospital-Rush Health System-Family Medical Clinic) were awarded.  According to self-reported data in the healthcare systems’ grant applications, the potential reach is approximately 56,818 Children with and without special healthcare needs at 58 clinic sites in 15 of 82 counties in Mississippi.  The aforementioned healthcare systems provided patient demographics, their total pediatric population, and a subpopulation of CYSHCN to verify the operability of their electronic health records.  Each healthcare system had to establish a multidisciplinary team (senior leader/CEO, provider champion, team leader, technical support or data analyst, care coordinator/social worker, and CYSHCN parent consultant/CHW) and document the names, disciplines, and contact information on a team roster. To ensure that the CYSHCN parent/caregiver has a voice, the CYSHCN Program included stipulations that each awardee will hire a care coordinator equivalent to a Social Worker III and CYSHCN Parent Consultant/Community Health Worker.  A roster is utilized to communicate with the teams. Currently, healthcare systems are conducting plan, do, study, act cycles (PDSA) Model for Improvement cycles to determine an effective and efficient workflow that includes the parent consultant and care coordinator within their organizations. 

 

ESM 3:  Patients who talked to the healthcare team about the special health care need, as he or                                           she becomes an adult (DH-5) by 68%.

ESM 3 Report:

The CYSHCN Program and independent evaluator assessed the awarded healthcare systems to determine if they had a transition policy.  Results indicated that systems could use support with establishing a transition policy. The next steps are to provide samples from the “Got Transition” or from other healthcare systems and promote warm transfers.  The Cares 2 Healthcare Systems secured CYSHCN Parent Consultants and Care Coordinators to serve on the multidisciplinary teams.  The CYSHCN Parent Consultants will educate and empower CYSHCN families and caregivers to discuss, create, and update transition plans.

ESM 4:  Patients whose healthcare team encouraged them to become more independent in                                           managing the special health care need (DH-5).

ESM 4 Report:

Healthcare systems will report the number of patients ages 0-17 and 18-21 with special health care needs whose healthcare team encouraged them to become more independent in managing the special health care need by 80%.  CYSHCN Parent Consultants are trained as Community Health Workers (CHW) for workforce development and to solidify their roles for consistency. They will educate CYSHCN patients and families/caregivers, identify and link families and caregivers to community resources, and empower them to become advocates.

Also, a CYSHCN Parent Leadership Training will be established by the MSDH CYSHCN Program’s Parent Consultant to develop a full training curriculum for the healthcare systems’ parent consultants. Also, plans are forthcoming with establishing a linkage to the Mississippi Help Me Grow and CYSHCN Cares 2 online resource center.

ESM 5:  The number of patients ages 0-17 with special health care needs receiving care in a                                           dental home.

ESM 5 Report:

The clinical and dental electronic health records (EHR) do not interface.  Therefore, it is a challenge reporting the percentage of children receiving care in a dental home and percentage of children and youth (ages 0-21) referred for annual dental visits.  The program will support healthcare systems with creating a template to install and activate in their EHR.  Also, training will be provided on template usage to capture this data.

 

Emerging Issues (CYSHCN)

None identified at this time.

Other Programmatic Activities (CYSHCN)

CYSHCN Abstract Approved for Presentation

The American Public Health Association (APHA) accepted an abstract entitled, "Improving Care Coordination for Children and Youth with Special Health Care Needs: Evaluation of the CYSHCN Cares 2 Initiative" (Fastring, D., Bilbro, A., Barnes, A., Polk, B., Nichols, J.) for presentation at the APHA Annual Meeting and Expo.

The abstract describes CYSHCN in Mississippi. The focus is to depict how it Identifies enablers and barriers that impact the ability of health care facilities to successfully coordinate medical care for CYSHCN.  Also it describes enhanced care coordination approaches for CYSHCN that can be implemented in similar systems of care. The APHA's 2019 Annual Meeting and Expo (Nov. 2 - Nov. 6) in Philadelphia.  APHA's Annual Meeting and Expo is the largest and most influential annual gathering of public health professionals.

Tools for Use:  A Team-based Approach by Design

The CYSHCN Program’s Central Office staff has been developing tools and resources to support Regional Care Coordinators (RCC), nurses and social workers.  Acceptance, Reconsideration, and Unable to Contact Letters, Consent Forms, updated brochures and a monthly reporting template are the latest products developed or standardized.  The products are being shared with the RCCs for feedback prior to being finalized during round table sessions and at site visits.  Obtaining their feedback is invaluable because they are a part of the team who provide care coordination.  These documents are also being reviewed by the CYSHCN Leadership Team and offered as resources/support documents that the CYSHCN Cares 2 healthcare organization can adopt for implementation. 

 

 

 

 

 

 

Success Story (CYSHCN)  

Revitalizing the CYSHCN Leadership Team

On September 11, 2018, the CYSHCN Program revitalized its multidisciplinary leadership team to support the program with increasing the number of children and youth, with and without special health care needs, who receive family-centered, coordinated care within a medical home and assisting CYSHCN with transitioning to an adult medical provider.

The CYSHCN Leadership Team met at the Jackson State University School of Public Health – Jackson Medical Mall.  During the meeting, presenters set the landscape by explaining the history and future direction for the CYSHCN Program; discussing relevant statistics for CYSHCN nationally and across the state of MS; and explaining the CYSHCN care coordination learning collaborative. The program ascertained a commitment to officially join the leadership team from fourteen participating individuals/entities. 

 

Since the inception of this action-oriented body’s commitment to the CYSHCN Program, leadership team members lent their expertise to finalizing the following products:   

• Designing a care coordination request for application (RFA)
• Announcing the RFP in the Mississippi Rural Health Association and Community Health Center Association of Mississippi newsletters 
• Producing a Scoring Tool to rank CYSHCN Cares 2 Awardees
• Finalizing a Notification of Award Letter
• Participating in the RFP Q & A Informational Conference Call
• Generating a CYSHCN Cares 2 Senior Leaders’ Kick Off Meeting agenda for awarded healthcare systems
• Establishing the CYSHCN Cares 2 Awardees Calendar of Events
• Developing CYSHCN Cares 2 Pre-work Manual
• CYSHCN Parent Consultants’ and Care Coordinators’ Orientation Guide
• Developing scopes of work for CYSHCN Parent Consultants and Care Coordinators
• Training Parent Consultants as Community Health Workers
• CYSHCN Parents’ and Families’ Caregivers Guide
• Serving as CYSHCN Cares 2 instructors

 

The CYSHCN Program is enthusiastic about the leadership team’s collaborative efforts in improving the health outcomes and quality of care for CYSHCN in Mississippi.