Priority 7 – Improve Access to Coordinated, Comprehensive, Ongoing Medical Care for CYSHCN

 

The C&Y Branch is committed to improving access to coordinated, comprehensive, ongoing medical care for CYSHCN. Assuring that children with and without special health care needs have a medical home in which they receive family-centered care is one goal of the Branch. To help gauge progress in this area, the C&Y Branch will continue to monitor data for NPM#11 (Percent of children with and without special health care needs, ages 0 through 17, who have a medical home), In addition, two ESMs have been selected: the percent of CYSHCN who received family-centered care as reported in the NSCH (2018-19 baseline is 87.4%); and the number of Medicaid, Managed Care Organization, or other stakeholder meetings attended by WCHS staff members with an agenda item related to medical home promotion (baseline to be compiled in FY21).

 

Education for Providers Regarding Medical Home

 

In FY21, information to support the medical home approach and partnering with medical homes will continue to be included in Child Health Program live and archived webinars that will be scheduled throughout the year for LHD clinical staff. A Child Health Conference will be planned for the fall 2021, pending COVID-19. Child Health provider web-based trainings will continue to be held quarterly and the CHTP will be held once during the fiscal year to train new enhanced role registered nurses. Bright Futures forms will continue to be promoted for use in all LHDs to support comprehensive care of CYSHCN using the medical home approach and the identification of children as CYSHCN. Audits of services in LHDs will continue to support the need for linkage to a medical home or communication with the medical home as part of Medicaid requirements for well visits at all ages. The PMC will use opportunities with the NCPS, NC Medical Society Leadership College Program, and other events to ask about family engagement in medical homes. The PMC will also solicit interest from providers and agencies about having the FLS contact them to discuss the use of PACL training to help them increase engagement of families in the care in their agencies. NCODH will also continue to offer accessibility reviews for LHDs at their request to enhance the care of CYSHCN and to assist in achieving accreditation requirements.

 

To increase the percentage of families of CSHCN who report that their children receive family-centered care, the C&Y Branch plans to continue several programs and activities during FY21. The CMARC program, which serves Medicaid and non-Medicaid children birth to five years of age, will continue to work to improve health outcomes for newborns, infants, and young children. The WCHS continues its partnership with the DSS, DMH/DD/SAS and other partners to provide care coordination for infants exposed prenatally to substances. In addition, as NC anticipates moving into Medicaid Managed Care in FY21, the CMARC program will continue to support families of children who were in the NICU, exposed to toxic stress, and have or are at risk for special health care. CMARC will continue to identify children and families whose health could be impacted by social determinants and connect them to community resources, which is amplified by DHHS Healthy Opportunities efforts to address non-medical drivers of health as part of Medicaid Transformation and the development of NCCARE360, a statewide coordinated care platform to link individuals to resources. Webinars and care pathways will continue to be developed and made available for CMARC care managers to help them partner with medical homes to care for children with a variety of conditions such as asthma, sickle cell, foster care, and neonatal abstinence syndrome.

 

Title V funds are used to support CMARC services for children, birth to 5 years of age, ineligible for Medicaid. The CMARC care managers will continue to use data reports to identify children who are receiving CMARC services that are not enrolled in Medicaid so that those children can be assessed for Medicaid eligibility. C&Y Branch staff members will continue collaboration with ACA outreach efforts to ensure that continued enrollment in public and private health insurance is available to all families and that transition services from Health Choice are coordinated. The C&Y Branch’s Minority Outreach Coordinator, hired in FY20, previously worked at the local level to ensure families’ access to affordable health insurance through the ACA.

 

The Governor-appointed Commission on CSHCN will continue to monitor the quality and availability of services for CSHCN. The Commission’s activities will include providing ongoing feedback and recommendations to DHHS on Medicaid Transformation, which is currently suspended. It is anticipated that transformation will be revisited following the NC legislative session in 2020. At this point, the Division of Health Benefits anticipates a July 1, 2021 start date for Medicaid Transformation-moving from fee-for-service to Medicaid managed care.

 

The Commission will continue to support DHHS efforts regarding telehealth and teledentistry during COVID-19 and in the future as appropriate. The Commission will reach out to the Secretary of DHHS to encourage ongoing use of telehealth as appropriate to meet the needs of CYSHCN. In addition, it will work with partners to help ensure that the necessary technology and bandwidth are readily available in underserved communities.

 

The Commission’s Behavioral Health Workgroup will continue to monitor and provide recommendations on the ongoing development and implementation of the Tailored Health Plan for children and youth with intellectual and developmental delays and complex behavioral health diagnoses. In addition, the workgroup will continue to partner with state-level and non-profit agencies to ensure that CYSHCN at all ages receive the necessary behavioral health services, which are crucial, especially during the pandemic.

 

The C&Y Branch will continue to support a Title V Parent Representative to participate on the Commission. Additionally, the C&Y Branch supports the Title V Parent Representative to attend two workgroups of the Commission. Branch staff will continue to support the Commission on CSHCN and its related committees (Behavioral Health and Oral Health) by preparing reports, gathering data, and explaining the implications of proposed policies that keep these entities informed and focused on the interests of children and families.

 

Several WCHS staff members will continue to promote the Pathways to Grade-Level Reading Action Framework of the NC Early Childhood Foundation whose vision is that all children in NC are reading at grade level by the end of third grade. The goal was modified to be more inclusive of children with all abilities and is now that NC children, regardless of race, ethnicity or socioeconomic status, are reading on grade-level by the end of third grade, and all children with disabilities achieve expressive and receptive communication skills commensurate with their developmental ages so that they have the greatest opportunity for life success. The Framework was aligned with the ECAP, both of which support work to increase developmental screening identification of CYSHCN, and provision of services to help CYSHCN and all children be healthy, safe, nurtured, learning, and on track for reaching their developmental goals.

 

Education for Families

 

As a result of the CYSHCN strategic planning sessions in FY20, the C&Y Branch, in collaboration with BFP, developed a CYSHCN web page geared toward families. The web page maintains current information and resources that address several key topics including: Diagnosis and Healthcare, Insurance and Financial Support; Family Support; Education Resources; Transition to Adulthood; and Advocacy/Legal. The web page is updated monthly by the Help Line Coordinator, who receives ongoing feedback from families.

 

The C&Y Branch will continue to maintain a statewide toll-free Help Line (available Monday through Friday) and email to assist families and providers with services for CYSHCN, including relevant up-to-date resources on COVID-19. Quarterly CYSHCN Help Line reports will be used to evaluate the call volume and Help Line inquiry characteristics. Reports on call volume and call requests will be shared quarterly with the NC Coalition to Promote Health Insurance for Children and with the Commission on CSHCN. The Help Line Coordinator, CYSHCN Access to Care Specialist and Minority Outreach Specialist will continue to include and discuss access to Health Check and Health Choice insurance options via scheduled presentations and exhibits using materials designed for diverse racial/ethnic groups in NC. Help Line outreach efforts will utilize NC Medicaid’s Enrollment Dashboard (https://dma.ncdhhs.gov/reports/dashboards#enroll ) which reports the number of people by county and program aid category who have received a Medicaid or Health Choice identification card and are authorized to receive Medicaid or Health Choice services for each report month. Staff members will also use the SCHS’s NC Social Determinants of Health by Regions story board maps. The Help Line staff will also explore the feasibility of adding a random phone call survey to Help Line callers to complement the existing online feedback survey.

 

As North Carolina will be getting ready for its hurricane season in FY21, the needs of CYSHCN during a natural disaster and a pandemic will be greater than ever. As a result, the NC ODH Director will partner with NC Emergency Management to develop a webinar series that will focus on the hurricane season and COVID-19. Families of CYSHCN will learn about and discuss personal and family preparedness during COVID-19; how state and local officials are preparing during COVID-19; and what resources are available to them as they prepare during COVID-19. The webinar series will be live, and the recorded sessions will be made available through the CYSHCN web page.

 

An Emergency Preparedness Summit for families of CYSHCN will also be held in FY21 to bring together state and local emergency managers, first responders, families of CYSHCN and non-profit agencies to develop and address strategies to ensure CYSHCN get their needs met during a natural disaster. The Summit will address the importance of appropriate and necessary health care transitions as they impact emergency readiness. The impact of COVID-19 will also be addressed as it will require additional emergency preparedness procedures for families of CYSHCN. It is planned that the attendees at the summit will include approximately 25% families of CYSHCN to assure that the family voice is central to the conversation.

 

Increasing Family Engagement

 

The C&Y Branch will continue to develop its multi-faceted family engagement activities in FY21. The BFP Steering Committee will continue to meet six times a year and plans to fill two Family Partner vacancies through an application process. The new members will be selected to ensure diversity of the overall Committee’s experience with the system of care for CYSHCN. Additionally, geographic, racial, ethnic, gender, sexual orientation, and ability will be taken into consideration to ensure a diverse Committee. The focus on less talking, more action and decision making will remain. Branch Family Partners are included in all aspects of program planning, implementation and evaluation. The C&Y BMT, the Unit Manager for Early Intervention Part C, and the Project Director of the Family Resource Center of the South Atlantic (the Title V family to family resource center) meet with the BFP.

 

The Parent Leadership Training Cadre will continue to deliver the PACL curriculum across the state. Plans for FY21 include increasing advertising of the curriculum to the Spanish speaking community and developing a webinar option for all of the modules, based on the successful pilot webinar series developed in FY20 for the UNC Cochlear Implant Center Parent Navigators.

 

The FLS will bring parents of CYSHCN together to create a plan to improve the Sexual Health for CYSHCN training for families of CYSHCN. In FY20, 28 participants attended the Sexual Health for CYSHCN training, and each participant agreed to conduct a minimum of two trainings in FY20. Plans for these trainings were put on hold, so the FLS and participants could create a plan for support and improvement.

 

The C&Y Branch will continue to partner with the Families-To-Families, holding quarterly meetings where efforts to determine opportunities for collaboration, share training opportunities, and reduce duplicative efforts are discussed.

 

In FY21 the FLS will hold regular phone or webinar meetings with the IA Parent Outreach Coordinators to provide support and guidance, as well as host an opportunity for them to share best practices, successes/challenges, and support each other in their work.

 

The C&Y Branch will explore its capacity to offer another Triple P Stepping Stones seminar training to further expand into unserved regions of the state or offer a more advanced level of Triple P Stepping Stones to the first cohort of twenty BFPs who were trained in Triple P Stepping Stones Seminar in March 2018. The C&Y Branch will also continue to support two parents of CYSHCN who are trained as Triple P practitioners to attend the quarterly, statewide NC Triple P Learning Collaborative, the Partnership for Strategy and Governance, and the NC Triple P Partners Collaborative.

 

In an effort to educate others using learned and lived knowledge, the C&Y Branch will continue to pair staff members with a parent or youth to develop and co-present at conferences, workshops, and webinars. These training teams reflect the natural complement of experience that everyone contributes to the topic.

 

Each year the C&Y Branch supports families to attend the AMCHP national conference. The scholarship recipients are chosen by the BFP Steering Committee via an application process. The C&Y Branch plans to support six parents/caregivers of CYSHCN to attend the 2021 AMCHP Conference. Three parent/caregivers will be selected to attend as C&Y Branch AMCHP Scholars, defined as a parent/caregiver of a CYSHCN age birth to 21 who has previously been sponsored to attend an AMCHP conference by the C&Y Branch. Three parent/caregivers will be selected to attend as C&Y Branch AMCHP Ambassadors, defined as parents/caregivers of a CYSHCN ages birth to 21 who have not previously been sponsored to attend an AMCHP Conference by the C&Y Branch. The rationale for having Scholars and Ambassadors is that there is value in sending parents who have never had this opportunity because they have a unique energy and drive, but there is also value in sending a family partner that has previously been sponsored so that they have an opportunity to build on the knowledge gained from their last AMCHP conference. BFPs selected to attend the AMCHP conference in March 2020 will have the opportunity to attend the conference virtually in August 2020. The C&Y AMCHP Scholars and Ambassadors will be asked to: attend the C&Y BFP Meeting in May 2021 to share a conference summary and what they found to be most valuable; join the 2021 Spring C&Y Branch Meeting Planning Committee and/or participate in the meeting; participate in a C&Y Branch Lunch and Learn (in person or via phone) to share their AMCHP experience; work with various C&Y Branch staff members and use the information learned at the 2021 AMCHP conference to be a content contributor for the 2021 Child Health Annual Meeting or for the 2021 NC Child Care Health Consultant Conference; and attend the May 2021 C&Y BFP Meeting to share how information learned at the AMCHP conference has been used to improve outcomes for CYSHCN on a local, state, or national level.

 

BFPs will continue to be actively engaged in the semi-annual Branch Wide Meetings, in planning, implementation, evaluation, and quality improvement efforts. These meetings will provide ongoing opportunities for building relationships among the Branch staff and Family Partners.

 

The NC SHC Program will expand its family and youth engagement through their participation in the bi-annual NCSHC Advisory Council Meetings and on behalf of their state funded health centers at the C&Y Branch meetings. The NC School Health Center Advisory Council’s primary purpose is collaboration with the NC SHC Program in order to address, advise and respond to the Program’s policies, procedures and proposals and provide input into and feedback about Program decisions affecting state funded SHCs. Students will provide presentations for council members and branch staff about their positive school health center experiences. They will also share feedback about how youth are effectively communicating with the health care staff and suggest ideas for increasing adolescent enrollment at their school health center. Through these activities, the NC SHC Program will increase internal collaborations with the FLS and BFPs and increase external collaborations with youth, families, and school health center staff.

 

Outreach Efforts

 

C&Y Branch efforts to collaborate with Latino and refugee community-based organizations will also include efforts with community health workers (promotores de salud) to ensure an understanding of services for CYSHCN. The Minority Outreach Coordinator will continue work with the NC Community Health Workers (CHW) Coordinator in the Office of Rural Health as training is developed and conducted by the state’s community college system. The Southeast Health Equity Council (SHEC) has been reorganized as of 2019. SHEC’s stated purpose is to build collaboration and partnerships to achieve health equity in the southeast region of the U.S (Federal Region IV) and the C&Y Branch staff members will continue to collaborate to ensure that NC has a CHW workforce in place.

 

Innovative Approaches Initiative

 

FY21 marks the second year of the three-year (2019-2022) funding cycle for IA. The C&Y Branch will continue to support four LHDs (serving ten counties) to assess and improve the local systems of care for CYSHCN through their IA initiatives. IA sites will continue to work directly with families to implement action plans addressing community systems of care for CYSHCN. IA officially received a Best Practices designation from AMCHP in November 2018. To continue to build the evidence for IA, the initiative will enter year two of a three year plan to undergo a rigorous process of evaluation to link effectiveness in improvement of NOM 17.2 and NPM’s 6, 11, 12, and 15. In addition, IA sites will continue to leverage external funds to support the goals of Title V.

 

NC IA will continue to be highlighted as a Best Practice on the AMCHP Innovation Station website, on HRSA’s Rural Health Information Hub, via AMCHP’s NPM 6 Toolkit, and via AMCHP’s Implementation Road Maps Learning Module which highlights state’s work on the focus areas of the Alliance for Innovation in Maternal and Child Health.

 

Furthermore, IA continues to produce and share Snapshot of Success stories which highlight IA strategies at work and serve as a reference point for replication of IA projects.

 

The local IA projects are required to have a parent of CYSHCN serve as co-chair of the steering committee and parents must also serve on subcommittees. All IA sites will continue to utilize a part-time Parent Outreach Coordinator position in FY21 whose primary purpose is to perform outreach activities to engage parents of CYSHCN and to recruit their active involvement in the IA initiative. This position works collaboratively with parents, primary care providers and community agencies to improve the system of care for CYSHCN up to age 21. In addition, the position assists with carrying out action plan projects for IA which address education and support needs for parents and caregivers of CYSHCN as well as information and support for care providers and community agencies serving CYSHCN regarding available resources and how to the access/navigate the service system. All IA counties will continue to coordinate formal mechanisms, such as focus groups and surveys, to receive input from parents of CYSHCN at a minimum two times per year in an effort to thoroughly examine the community system of care for CYSHCN and inform action plan priority areas.

 

Each IA site will continue to have a Parent Advisory Council (PAC) which is a diverse group of parents and guardians of CYSHCN. The PAC is committed to advocacy and educating other families, agencies and healthcare professionals on issues that affect CYSHCN. PAC members will continue to meet monthly with service providers and agencies to promote collaboration and make recommendations as appropriate to the IA Steering Committee.

 

IA PAC members will serve external to IA on a variety of community and state level advisory boards/groups such as the ECAC Board of Directors for a term of 10/2018-9/2021, NC Council for Developmental Disabilities Board, Birth-Five Council, Special Olympics Family Advisory Committee, local Smart Start boards, the University of North Carolina at Pembroke’s Adolescents Transitioning to Leadership and Success (ATLAS) project, Cabarrus Mental Health Task Force/Advisory Board, Union Local Interagency Coordinating Council, Cabarrus System of Care Collaborative and the National Alliance of Individuals with Dual Diagnosis. IA parents will also serve as consultants within their communities and provide trainings on topics including FAS and Autism Spectrum Disorders.

 

IA sites are also engaging systems of care for young children to reduce the effects of developmental delay, emotional disturbance, and chronic illness. Distribution of Mental Health Flow charts developed by both the Cabarrus and Robeson IA sites to assist with navigation of the MH system will continue in FY21. IA sites are also educating on the connection between adverse childhood experiences and their impact on disability and health and ways to foster resilient communities for CYSHCN. IA’s newest goal, which was added in FY18, focuses on ensuring that families of CYSHCN have adequate health insurance and financing to pay for needed services. In FY21, IA will continue to promote the Health Care Financing Resources Guide was developed in FY20 to help families of CYSHCN navigate the health care system and to find financial resources to cover therapies, equipment, and other health necessities. The guide also features a glossary to help families manage the technical terms found in the world of health care and health financing. The Health Care Financing Guide was a project of the IA initiative housed within the Cabarrus Health Alliance and the most updated version of the guide can be found at www.resourcecafe.org. As the guide is not an exhaustive list of resources, consumers with additional needs are referred to the NC CYSHCN Help Line for additional resources.

 

Oral Health Care for CYSHCN

 

The Commission’s Oral Health Workgroup will continue to focus on education and outreach to families and providers and is also charged with providing the Commission with recommendations to promote access to dental providers accepting Medicaid for children and youth with physical or intellectual disabilities.

 

Two retired dental hygienists of DPH’s Oral Health Section were hired in FY20 to promote the importance of a dental home for CYSHCN and the use of the Dental Home Checklist for CYSHCN among family organizations and oral health providers. They will utilize the presentations developed in FY2020-2021 to reach families and oral health providers throughout the state. Presentations will be made available virtually as well as in-person, as COVID will likely have an impact on travel and in-person contact in FY21. C&Y Branch staff will be working with the dental hygienists to ensure that the presentations can be delivered virtually on various DPH-supported webinar platforms. BFPs will co-present with the dental hygienists when addressing family organizations and will give their presentations on-line and in-person, depending on the impact of COVID-19 on travel.

 

Additional Strategies to Support CYSHCN

 

The SCCNC working collaboratively with the NC CCHSRC, will continue to provide training, technical assistance, and support for 84 local CCHCs to develop strategies for the inclusion of CSHCN in the state’s licensed child care facilities. In the CCHC Service Model, which aligns with Caring for Our Children best practice standards, priority of services is given in order of the vulnerability of the children in early care settings, beginning with infants and children with special health care needs.

The PMC and SCCNC will continue to work with the NC CCHSRC and Our Children’s Place of Coastal Horizons Center to work on developing strategies and tools for CCHCs, child care providers, and local re-entry councils to help support children and their families with incarcerated or returning parents who have children in child care. Our Children’s Plan serves as NC’s leading advocate and education resource focused on children of incarcerated parents.

 

The Branch State Public Health Genetic Counselor will provide additional training and technical assistance about children and youth with and at risk for genetic conditions in FY21. The state genetic advisory committee, made up of professionals, families, and other stakeholders with interest in genetics, will meet quarterly to discuss genetic issues and implement components of the 2020 NC Public Health Genetic and Genomics Plan.

 

The EHDI Advisory Committee will continue meeting quarterly and will assist with outreach efforts and program evaluation. EHDI Program staff will increase collaborative efforts with other programs and agencies such as CMARC, Family Connects, EIB, MIECHV, NFP, PCM, LHDs, WIC, Hands & Voices, National Center for Hearing Assessment and Management (NCHAM), HRSA, CDC, and EHDI programs in other states and territories to influence system change.

 

The EHDI program will work with The CARE Project to provide opportunities for parents and professionals to support each other along the emotional journey of children who are deaf or hard of hearing. Parents as Collaborative Leaders training will continue to be offered to families across the state in collaboration with family support groups and agencies.

 

The EHDI Parent Consultant will lead an EHDI Parent Support Team, formed to offer parent-to-parent support for families of children who are deaf or hard of hearing. The initial team consists of six mothers of children who are deaf or hard of hearing and is diverse in race/ethnicity, communication mode, language (ASL, Spanish), geographical location, and type of hearing technology used (hearing aids, cochlear implants, no technology). Initially, the EHDI program will partner with the Early Learning Sensory Support Program for Children with Hearing Impairment to enroll families in this support program.

 

Current information about the receipt of intervention services and the outcomes of D/HH children that are identified through EHDI programs is limited. With the shift in focus toward evaluating long-term outcomes for children who are D/HH, the EHDI Program will enhance collaborations with educational programs serving these children with a focus on language, educational, and literacy outcomes. Appropriate Memoranda of Agreement will be developed to allow data sharing between the NC DPH and the NC DPI in a manner that is compliant with both HIPPA and FERPA regulations.

 

WCSWeb, the EHDI information system, will be enhanced, in collaboration with the Preschool Development Grant, to allow for data to be integrated into ECIDS. The ECIDS Governance Council has recommended integration of EHDI data into ECIDS to facilitate earlier assignment of a unique identifier which can be used to match data from a variety of early childhood programs and better measure outcomes for children. This work also contributes to the NC ECAP.

 

The EHDI program will continue to facilitate a “Common Ground Initiative” with key educational and health partners to engage in critical conversations to address conflicts that have arisen affecting schools and programs serving children and youth who are deaf or hard of hearing and their families over time. The goal of this initiative is for Schools for the Deaf, OPTION Schools (Spoken Language), and health professionals to be able to continue collaboration on behalf of the education and whole person development of all deaf or hard of hearing infants, children, and youth so that all of these children reach their full potential. Fourteen “Shared Understandings” have been developed by the NC Common Ground Workgroup. During FY21, these Shared Understandings will be broadly disseminated to stakeholder groups to facilitate discussion on proposed policy changes to decrease disparities in educational opportunities and outcomes for deaf and hard of hearing children in NC. Early identification of hearing loss in children, followed by appropriate and timely intervention, are key contributors to goal 8 (high quality early learning), goal 9 (on track for school success) and goal 10 (reading at grade level) of the NC ECAP.

 

The AAP has named a new NC EHDI Chapter Champion, who is deaf, to work closely with the EHDI Program. The developmental pediatrician will: 1) participate on the EHDI Advisory Committee; 2) provide consultation and support to new learning communities created across the state; 3) continue to provide feedback on program materials and correspondences targeting the medical home; and 4) consult with the NC Pediatric Society and the C&Y PMC to identify strategies to share hearing loss information with its members, including presentations at meetings.

 

The EHDI Program’s Parent Consultant will continue to engage parent partners in EHDI activities. Additional parent members will be sought for: 1) participation on the EHDI Advisory Committee; 2) participation on EHDI Program committees; 3) review and development of program materials; 4) participation in one of the EHDI learning communities focused on increasing engagement of the medical home in the EHDI program; 5) attendance at Parents as Collaborative Leader Trainings; 6) attendance at the National EHDI conference; and, 7) co-presenting with EHDI regional consultants at stakeholder meetings, conferences, and during Better Hearing and Speech month activities about the importance of newborn hearing screening and timely follow up. In addition, the State Title V Agency will continue to leverage resources to support a variety of contracts including genetic/metabolic services, screening to identify at-risk infants with neural tube and other birth defects, multidisciplinary craniofacial services for children, and treatment for communicative disorders related to hearing loss.

 

The EHDI program coordinates a state-wide Cytomegalovirus (CMV) workgroup, made up of newborn screening stakeholders, families, audiologists, laboratorians, researchers, infectious disease specialists, otolaryngologists, pediatricians, and other medical providers. This workgroup will provide education to healthcare providers and the general public on CMV in efforts to increase awareness. They will also explore current screening protocols in NC and make recommendations for change as needed.

 

The EHDI Program will work collaboratively with the Division of Services for the Deaf and Hard of Hearing to implement the recommendations made by the Task Force on Access to Health Services for the Deaf and Hard of Hearing. This Task Force was convened in partnership with the NCIOM and the recommendations are found in the Assuring Accessible Communication for Deaf, Hard of Hearing, and DeafBlind Individuals in Health Settings report. Since the onset of the COVID-19 pandemic, the need for communication access has risen to a new level of importance, especially in light of mandates and recommendations for the wearing of masks. Telemedicine was not specifically addressed in the current report, but as a result of COVID-19 and increased use of telehealth, the Task Force may reconvene to address this issue during FY21.

 

Ensuring Health Care Transition Services

 

One component of improving access to coordinated, comprehensive, ongoing medical care for CYSHCN is to ensure that YSHCN receive services necessary to make transitions to adult health care. The C&Y Branch has set an objective to improve this indicator as measured through the NSCH by 10% from a 2017-18 baseline of 24.1% to 26.5% by 2025.

 

Transition Work Group and CYSHCN Strategic Plan Health Care Transition Recommendations

 

During FY21, the IA Director will dedicate a portion of her time on HCT and will coordinate the work on health care transition at the Branch level. The C&Y Branch Transition Work Group, including family representatives from the C&Y Branch Family Partners, will continue to meet and reach out to external partners to learn about their efforts and partner with them as appropriate and continue to implement and revise relevant CYSHCN Strategic Plan Recommendations. The CYSHCN web page will continue to provide information on transition and will be updated to include additional resources on a regular basis.

 

The Commission on CSHCN will explore the development of sample language for Transition of Care policies based on IA efforts and academic and hospital transition policies.

 

The PMC will also continue to maintain and promote communication among academic and community providers working on HCT efforts for YSHCN and with Branch programs to share best practices. The Help Line for CYSHCN links families to the ECAC, GotTransition.org, and the AAP for transition information and resources. The SHC program will continue to emphasize the importance of “on-site” clinical services to support the needs of YSHCN and to support programs, incentives, and educational opportunities that help adolescents transition into all aspects of adult life. Addressing transition as a requirement of the annual well visit for all adolescents is strongly recommended Division of Health Benefit’s Health Check Program Guide (NC Medicaid for Children).

 

MIECHV and CMARC programs will increase efforts to work on HCT skills with adolescent mothers served by their programs or whose children are served by these programs. The PMC will provide resources and TA specific to engaging adolescents and ways to incorporate HCT into home visits and care management and in consultation by CCHCs with child care facilities.

 

IA Transition Activities

 

IA meetings that focus on transition will provide opportunities for IA sites to share educational materials, policy changes and events focused on transition in their communities. The IA Director will develop a menu of options that can be replicated in other communities. This information will be made available on the CYSHCN web page.

 

The Robeson County IA initiated the (Adolescents’ Transition to Leadership and Success) ATLAS project and will provide guidance and updates to other IA sites to determine if could be replicated in the remaining IA counties. This model pairs adolescents with chronic illness with mentors who are college students as well as youth from the community to provide social support for adolescents with chronic medical conditions and a forum to discuss and improve the experience of being an adolescent with a chronic illness. The goal of the group is to explore personal experience and reach out to others to try to improve the experience of being a teen with a chronic illness through monthly meetings, social activities, and service projects.

 

Health Care Transition for Youth in Foster Care

 

The PMC will continue to co-chair the Transition Age Work Group with Fostering Health NC. C&Y Branch staff members will continue to be involved, and additional staff will be identified to serve on the work group, which was established to assist in education, resources development, and outreach to transition age youth who are exiting, or have exited, foster care to help ensure better health outcomes through improved health programming. Activities will include reviewing and enhancing DSS protocol and guidance on informed and shared decision-making regarding health care for youth in foster care and aging out of foster care. The work group will partner with youth from Strong Able Youth Speaking Out (SAYSO) and health care providers caring for children in medical homes in the development, review and update of protocols and guidance on informed and shared decision-making. The work group will survey youth currently in foster care and formerly in foster care from ages 12-21 throughout the state to ask about their health priorities and issues related to transition. Through the work group, Branch staff will collaborate with LINKS, NC Child, Youth Villages, Bright Futures at Wake Tech, Medicaid, SAYSO, and other stakeholders to develop and pilot educational resources for transition age youth on transitioning to an adult medical home and applying for Medicaid.

 

Modifications to Agreement Addenda and Contracts

 

In FY21, the C&Y Branch Transition Workgroup will review the current literature and tools (GOT TRANSITION, etc.) related to transition of youth from pediatric to adult health services. Recommendations will be made to incorporate the use of transition tools into LHD and pediatric practices to assist parents, youth and practitioners in the transition process. Staff will explore ways to incorporate transition recommendations into agreement addenda and contracts for the FY22 contract year, including providing some sample transition of care policy statements that practitioners can adapt/adopt for their practice. In addition, the C&Y Branch Transition Workgroup will develop checklists for parents, youth and practitioners to support an effective and collaborative transition from pediatric to adult health services, and C&Y Branch staff members will incorporate transition information into training opportunities with LHDs and SHCs.

 

Prophylactic Antibiotics for Children with Sickle Cell Disease

 

During FY21, the Sickle Cell Education Consultant, in collaboration with SC ECs and other staff, will develop a toolkit for parents that will include information about the importance of prophylactic antibiotics for children with sickle cell disease. Once a draft is developed, SC ECs will pilot the toolkit during initial contacts with parents who have a baby with sickle cell disease. Feedback received from pilot testing will be used to modify the toolkit for parent education. The final toolkit will be rolled out by May 31, 2021, and be used during initial encounters and will be repeated yearly during annual assessment visits with each family until the child reaches five years of age. SC ECs will be required to document completion of these action steps in writing and in the WCSWeb Database.

 

The Sickle Cell Education Consultant, along with hematologists from the six sickle cell comprehensive medical centers, will host a meeting by October 31, 2020, to discuss the development of a provider webinar focused on the importance of prophylactic antibiotics and strategies for offering free continuing medical education credits to webinar participants. Webinar components will include creation of an agenda and learning objectives, identification of presenters, development of a post-webinar questionnaire to measure increase in knowledge gained, and creation of a framework to address how to promote the webinar to providers. The webinar will be created and conducted by May 31, 2021, and will be archived on the NC Sickle Cell Syndrome Program’s website.

 

Social Emotional Health of Children Served Through the CDSAs

 

The NC ITP will continue its efforts to provide timely and comprehensive early intervention services for children with special developmental needs and their families during FY21. One specific area in which the NC ITP goals overlap with those of the MCHBG is in improving the social emotional health of the children served through the CDSAs. The EIB would like to increase the percentage of children enrolled in the ITP who increased their rate of growth in positive social-emotional skill from 74.3% (FFY19 baseline) to 85% by 2025. This increase represents the average score needed to reach the top 10% of all states and territories for this indicator. This indicator also aligns with Goals 7 (Social-Emotional Health and Resilience) and 9 (On Track for School Success) of the ECAP. Specific NC ITP strategies toward reaching this goal include implementing statewide universal social-emotional screening using the ASQ-SE as well as enhancing and expanding the use of other evidence-based social-emotional assessment tools. In addition, the NC ITP will increase the number of Infant Mental health Specialists available as staff and contract providers.

 

The NC ITP submitted a proposal to the Preschool Development Grant (PDG) that included training and professional development on early childhood mental health/social emotional development. Embedded in the proposal was training for EI staff on Attachment and Biobehavioral Catchup and professional development in social emotional health, assessment and identification. The ITP is receiving technical assistance from the National Center on Child Poverty and Georgetown Center for Children and Families, through the Promoting Research-informed State Infant and Early Childhood Mental Health Policies and Scaled Initiatives (PRiSM) project that promotes efforts to achieve positive outcomes for infants and young children by highlighting research-informed infant-early childhood mental health state policies and scaled initiatives. In additional to PRiSM, the ITP has been engaging in a TA opportunity from the Zero to Three examining infant and early childhood mental health financing and policy efforts in states across the US. Staff members from the ITP serve on the Leadership Team of the NC Initiative for Young Children’s Social-Emotional Health being co-led by NC Child and the NC Early Childhood Foundation and will continue to do so in FY21. NC ITP will also be implementing the Alliance for Infant Mental Health infant mental health competencies as part of their overall system enhancement to support early childhood mental health.

 

Family Engagement and Leadership

 

Family engagement and leadership is critical throughout the NC ITP. In addition to the early childhood mental health proposal, the EIB also submitted proposals to the PDG related to system priorities related to family engagement and leadership and teletherapy. With PDG funds, the EIB will continue their commitment and work around family engagement and leadership by enhancing family engagement in NC ITP for Preschool Transition and developing family engagement activities to support LICCs.

 

One of the most significant challenges is when a family moves from ITP services to preschool services. The NC ITP will partner with the ECAC to engage families early and provides resources, tools, and training to ease the transition from early intervention to preschool services. These activities will align with, and support, the guiding principles as outlined in the NC Early Childhood Cross-System Family Engagement and Leadership Framework.

 

In NC, LICCs are responsible for child find efforts, public awareness/communication, and the facilitation of collaborative community efforts on issues pertinent to the county populations they represent. The LICCs are comprised of community members who have a vested interest in an interagency system of service provision for children birth to five and their families. A July 2019 survey of LICCs revealed two impediments to the successful achievement of these efforts – lack of funding for child find activities and lack of parent representation on the LICC (approximately 60% lack parent representation). This PDG initiative will focus on identifying and removing barriers to family engagement by providing intentional supports and incentives to develop, sustain, and empower families through self- and community advocacy to inform local and state-level decisions. More than 32,500 children are enrolled in or referred to the NC ITP in counties with active LICCs. Working through the LICCs, the NC ITP will create an incentive program to recruit parents and develop a regional LICC conference and communications program to help LICCs establish concrete pathways to recruit and retain family members on the LICCs and fund child find activities.

 

In addition to these family engagement and leadership activities, the NC ITP will continue to contract with the ECAC to provide parent leadership training with enrolled families. The PACL trainings provide detailed information regarding leadership opportunities available to families at both a state and local level. In addition, the NC ITP will release an online professional development tool for families titled “informed and Inspired Families” which outlines the policy processes and ways families can help influence policies for young children with disabilities and special needs.

 

Teletherapy Efforts

 

As part of the original SSIP work, the NC ITP identified a critical need for teletherapy to help reach families in rurally disparate areas of the state. Recognizing that shortages in clinical personnel serving young children across the state and that this shortage is particularly magnified in rural areas, where sparse populations and driving distances compound the problem, teletherapy was considered to expand access to high-quality services equitably across the state. Utilizing teletherapy as a method for providing critical and time-sensitive services helps ensure that needed services such as Speech-Language Therapy are provided to young children with developmental delays at the needed frequency and intensity. With the COVID-19 pandemic, the need for teletherapy has been magnified as a way to effectively support families with needed resources and services.

 

The EIB, through the PDG, will expand the early intervention teletherapy pilot, with an emphasis on ensuring equity and access to technological and linguistic supports to families enrolled in the program. Provision of teletherapy will be implemented using appropriate devices which are encrypted and confidential ensures that families are protected under both the Family Education and Privacy Rights Act (FERPA) and the Health Information Portability and Accountability Act (HIPAA). Further, interpreter services will be afforded to families across the state to receive high-quality teletherapy services.

 

Coaching and Natural Learning Environment Practices

 

The NC ITP also has a goal to continue SSIP efforts to achieve statewide implementation of Coaching and Natural Learning Environment Practices (NLEP) by 2025. During FY21, the ITP will provide training and follow-up support as outlined in the NC ITP Coaching and NLEP Toolkit; maintain a cadre of certified Master Coaches; and establish and maintain a cadre of Fidelity Coaches. In addition, the ITP will partner with the Family Infant and Preschool Program to provide training and certifications opportunities.

 

Pyramid Model

 

In addition, during the summer of 2020, the NC ITP will develop a plan, utilizing the principles of implementation science, to provide staff and provider training and technical assistance opportunities in order to implement the Pyramid Model for Supporting Social Emotional Competence in Infants and Young Children (Pyramid Model).