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

 

The DCFW/WCHS is committed to improving equitable access to coordinated, comprehensive, ongoing medical care for CYSHCN. Assuring that children with and without special health care needs have a quality medical home in which they receive family-centered and culturally sensitive care is a priority for TA, consultation and/or training for several sections within DCFW and several programs in the Women, Infant and Community Wellness Section in DPH. To help gauge progress in this area, the DCFW/WCHS 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) along with the two selected ESMs in FY23.

 

Education, Training and Support for Providers Regarding Medical Home

 

In FY24, TA and consultation to support the medical home approach for CYSHCN when LHDs are serving as the child’s primary care provider (or medical home) or partnering with a child’s medical home will continue to be provided by the RCHNCs, SCHNCs, and SMD to LHDs. Child Health Program live and archived web-based trainings for LHD child health providers will continue to be held at least quarterly to address family-centered and culturally sensitive preventive health care based on Bright Future recommendations; screening, identification and management of mental health concerns; chronic disease prevention and screening, oral health screening and management, special needs related to refugee and immigrant health (i.e., risk for lead exposure, cultural beliefs about disease processes, misinformation), and the need to identify and address SDoH (i.e., food security, transportation, literacy) for all children and especially CYSHCN. The CHNCs will continue to work with DPH Office of the Chief Public Health Nurse (OCPHN) Consultants to encourage child health providers in LHDs to improve screening and billing related to SDoH. CHNCs will also promote linkage to NCCARE360 for resources across the state to address SDoH as the child’s medical home or with the child’s medical home in the NC InCK five pilot counties who are using an alternative payment model to address food security and housing and also kindergarten reading. Additional TA will be provided by CMARC program staff to LHDs participating in the HOP in three areas of the state to address SDoH for all children (including CYSHCN) and their families in partnership with the child’s medical homes. The Child Health Training Program will be held once during the fiscal year to train new CHERRNs to help LHDs serve as medical homes for children, especially CYSHCN, or work with the child’s medical home, and continue program monitoring of services and policies in LHDs. 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.

 

The SMD will collaborate with the FLS and FP to develop a slide set to use for health care providers and other professionals about family-centered and culturally sensitive care delivery as part of quality medical home approach. The SMD will use ongoing and new educational and support opportunities with the NCPS, NC Academy of Family Physicians, NC Medical Society Leadership College Program, and other events to include slides from the presentation. The SMD, CMARC program manager, CHNCs and other Title V staff will continue to serve on several advisory committees external to NC DHHS and partner with NC InCK staff and their integration specialists to discuss how to identify and support children eligible for care with family navigators. These NC InCK family navigators will help families partner with the care team (which includes medical home providers) to create a shared action plan across multiple sectors (i.e., early learning, education) in the five pilot counties.

 

In FY24, the Title V CYSHCN director will continue to work with DCFW/WCHS staff to review the themes, challenges, and recommendations from Path4CNC convenings and C4CNC advisory group to determine a timeline and processes to update the CYSHCN Strategic Plan by 2025 contingent on capacity in relation to staff vacancies. This process will help to determine the education, support, and trainings to be planned for FY24 for health care providers and other professionals related to medical home.

 

Additional efforts by the DCFW/WCHS to increase the percentage of families of CYSHCN who report that their children receive family-centered care in a medical home include continuing several programs and activities during FY24 that were described in the CYSHCN Domain Annual Report. Specific plans for the CMARC program include continued collaboration with other agencies and programs, such as EI and Pregnancy Care Managers, to ensure an effective system of care. The CMARC program, in conjunction with the Prepaid Health Plans (PHPs), will continue to require staff to collaborate with Advance Medical Homes in their communities, both at the system level for effective identification of children in the CMARC target population and at the individual child level for those children engaged in CMARC services, as collaboration with the medical home will ensure the healthiest outcomes for the child. CMARC staff will also continue to partner with NC DSS to create a system to support a Plan of Safe Care for children identified to be substance affected infants and support staff in the use of the Virtual Health/Care Impact documentation platform system. The CMARC program will continue to provide technical assistance and training per the NC Medicaid Program Guide for Management of High-Risk Pregnancies and At-Risk Children in Managed Care to enhance performance assessment and improvement processes to ensure program expectations are met. The CMARC staff will continue to collaborate in FY24 to promote the HOP Pilot services and will continue to partner in the care of patients with the NC InCK pilot program in five counties. 

 

With the launch of NC Medicaid Managed Care, CMARC state staff members will continue to work with NC DHB to assure that care management services are maintained and enhanced for children birth to five years of age who meet the program population criteria. CMARC staff will work with recipients needing extra sustainability with the LME/MCO’s related to Behavioral Health I/DD Tailored Plans for a limited timeframe until officially launched. Care management services will continue to include general developmental screening using the SWYC tool. The results of the SWYC are communicated to the medical provider for further assessment of any identified needs or concerns and discussed with the parent or guardian. CMARC care managers will continue to conduct screenings using the Life Skills Progression Assessment tool to assess all children that have experienced toxic stress or adverse life events that reside with their biological, adoptive, or permanent kinship family and share the results with the appropriate medical home practitioners and facilitate EI referrals. CMARC collaborates with the member’s medical home to notify the medical home of significant changes made to the Care Plan, and if CMARC services are stopped, including why the services stopped.

 

The NC Commission on CSHCN will continue to fulfill its legislative charge to monitor the availability and quality of health services for children with special health care needs delivered by medical homes, specialty providers, mental health providers, dental health providers, pharmacists, home health, therapists (i.e., speech, PT, OT), other community agencies, providers and professionals and make recommendations to key leaders in the state in DHB, DMH/DD/SAS, DSS, and other agencies. This includes having the Commission continue periodic bi-directional communication with the five PHPs that serve Medicaid beneficiaries through managed care. In addition, the Commission will continue to provide feedback and recommendations on the Tailored Plans.

 

The Commission’s Behavioral Health Workgroup will continue to specifically review and provide feedback on Medicaid policies and services related to mental health and substance use. It will also reach out to the state’s largest insurer to begin an active dialogue on private insurance coverage of services for children with special health care needs and explore ways in which private pay families can access these services. The Oral Health Workgroup will continue its outreach efforts to providers and families and will provide training and technical assistance to dental providers and families to ensure that children with special health care needs have access to a quality dental home.  The Community Alternatives for Children (CAP-C) Workgroup will continue to meet with DHB staff to pilot a tool that was developed to assist providers in completing the CAP-C application process for their patients.

 

The Commission’s recently established Pediatric Home Nursing Crisis Workgroup will continue to gather data and meet with DHB leaders to share feedback and recommendations to increase the quantity and quality of home health nurses serving the most vulnerable CYSHCN.  Workforce development issues, including salary, education and training will continue to be at the forefront of discussions and recommendations

 

The CYSHCN Help Line Coordinator and SMD plan to reach out to two additional pediatric medical homes, including those in rural areas, to increase use of the Help Line and to increase conversations about issues coming up for CYSHCN in medical homes in the community. In addition, several staff members from the DCFW/WCHS will continue to serve on the state partner advisory committee of EarlyWell Initiative and promote actions on the recommendations developed from the Medical Home Work Group.

 

Education, Training and Support for Families Regarding Medical Home

 

In FY24, a small work group comprised of the FLS, CYSHCN Outreach Staff, and FP will continue work to develop and try to pilot a medical home focused training based on themes, training format, and topic preferences obtained from a “parent training choices” survey that was conducted in the Fall of 2022. The training will focus on the importance of the medical home specifically for families and will be added to the Parent Leadership Training Cadre of resources. An accompanying flyer highlighting the benefits of a medical home will be developed and posted on the DCFW/WCHS CYSHCN webpage.

 

The Title V CYSHCN Director will work with the FLS, CYSHCN Outreach Staff, FP and other DCFW/WCHS staff members to review the themes, challenges, and recommendations from Path4CNC convenings to determine a timeline and processes to update the CYSHCN Strategic Plan by 2025 which will include strategies to support the family-centered medical home approach. The past Path4CNC and ongoing C4CNC advisory group efforts will also be used to help to determine additional education, support and trainings planned for FY24 for families and youth related to medical home. The DCFW/WCHS also will continue to explore how NC can learn from other states about the use of the Family Voices Family Engagement Checklist or Family Engagement in Systems Assessment Tools. DCFW/WCHS members serving on the C4NC will also discuss the use of PACL training to help practices increase engagement of families and use of family advisors in the processes and policies of medical homes and their agencies.

 

The DCFW/WCHS 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 the importance of having and using their medical home and how to access relevant up-to-date resources on COVID-19. The CYSHCN webpage will continue to be updated in FY24 to include more specific information about the use of a medical home and updated as needed using ongoing feedback from the FLS, Access to Care Specialist, FP, and families who visit the website and use the Help Line. The DCFW/WCHS, in collaboration with families, providers and agencies, will continue to review and revise regular communication to families applying for Social Security Disability Insurance which includes linking families to resources to help find a medical home.

 

The SMD will continue to identify and use opportunities in FY24 to promote the need to address emergency preparedness for all children including CYSHCN during presentations and discussions with a variety of agencies including but not limited to LHDs, Emergency Medical Services for Children, DSS, pediatricians affiliated with Mountain Children’s Network (covering the western part of the state), the NC Medical Society (state chapter of the AMA), and the NCPS (state chapter of the AAP). This includes the need to prioritize well child care, immunizations (including COVID-19 vaccination), and screening for social drivers and emotional and mental health concerns during times of disasters (such as the current pandemic and seasonal hurricanes) and afterwards, especially for CYSHCN.

 

The NC EHDI program will continue to maintain the ncnewbornhearing.org website with an entire section dedicated to families.

 

Increasing Family Engagement

 

The DCFW/WCHS will continue to develop its multi-faceted family engagement activities in FY24 which will be easier with the FLS position filled during FY23. The FP Steering Committee, including ten diverse FP and the DCFW/WCHS Management Team, will meet quarterly. The focus on less talking, more action and decision making will remain. FP are included in all aspects of program planning, implementation, and evaluation.

 

The Parent Leadership Training Cadre will continue to deliver the PACL curriculum across the state and new opportunities for families of CYSHCN will be built on that model. Plans for FY24 include offering a three-module series called Teaching Children with Disabilities about Sexual Health and a Medical Home training. FP will continue to serve as trainers and provide feedback for training improvements. Seeking out innovative partners in the community to host trainings from the Cadre will be emphasized. Recruiting new FP from the training participant pool will be explored.

 

In FY24, 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 DCFW/WCHS will continue to partner with ECAC (NC’s F2F), holding project-based meetings to determine opportunities for collaboration, share training opportunities, and reduce duplicative efforts. Relevant DCFW/WCHS content will be promoted in ECAC’s quarterly disability and health newsletter Health Online.

 

The DCFW/WCHS will continue to offer Triple P Stepping Stones seminar training events in FY24 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 FP who were previously trained. The DCFW/WCHS will also continue to support a parent of CYSHCN who is trained as a Triple P practitioner 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 and experience, the DCFW/WCHS will continue to pair staff members with a parent or youth to develop and/or co-present at conferences, workshops, and webinars. These training teams reflect the natural complement of expertise that everyone contributes to the topic.

 

The NC EHDI program will continue to expand family engagement by hiring up to two additional parents of children who are D/HH to serve as part-time EHDI Parent Consultants. The two current EHDI Program Parent Consultants 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 EHDI learning communities; 5) attendance at PACL Trainings in collaboration with family support groups and agencies; 6) attendance at the National EHDI conference; and, 7) co-presenting with EHDI regional consultants at presentations at local, state, and national meetings. The bilingual (Spanish) Parent Consultant will focus on improving engagement of families of D/HH children in the Hispanic community. The NC EHDI Advisory Committee will continue to have no less than 25% of its membership be parents of children who are D/HH or adults who are themselves D/HH.

 

In conjunction with the NC SLPH, the newborn metabolic screening follow-up program will work to increase family engagement with the NBS program. This will be accomplished, in part, through efforts associated with the newly awarded NBS Propel grant funded by HRSA.

 

Outreach Efforts

 

Outreach efforts described in the CYSHCN Domain annual report will continue in FY24. The newly hired Minority Outreach Coordinator will continue to refine outreach strategies to promote children’s health insurance and programs and supports for CYSHCN in different populations, with an emphasis on Hispanic/Latino/a/x populations   Strategies will be used to strengthen relationships with additional agencies and organizations caring for additional underserved populations including but not limited to refugees, Asian Americans, and American Indians. DCFW/WCHS efforts to collaborate with Latino and refugee community-based organizations will also include efforts with CHWs (promotores de salud) to ensure an understanding of services for CYSHCN. The Minority Outreach Coordinator will continue work with the NC CHW Coordinator in the Office of Rural Health, CHW master trainers, and other agencies involved with revising and providing the CHW certification training is offered through the state’s community college system.

 

Innovative Approaches Initiative

 

FY24 marks the second year of the three-year (2023-2025) funding cycle for IA. The DCFW/WCHS will continue to support two LHDs 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. Some of the items included in these action plans include:

• Enhance outreach to minority populations and equitable engagement among families and caregivers of children with CYSHCN, expanding language access and culturally appropriate services through advocacy and training.
• Continue to expand support for transition activities for CYSHCN by partnering with local schools, using websites to share transition resources, and integrating the use of Care Notebooks as a tool that can be used by families of CYSHCN.
• Explore ways to engage community partners, such as the Children and Family Resource Center, to allow for more continuity and sustainability for the Parent Advisory Committees.
• Work with outdoor recreation partners to increase accessibility and physical activity for CYSHCN through expansion of TRACK Trails project.
• Expand opportunities for CYSHCN with sensory sensitivities to participate in community activities and events with the integration of sensory tents as a part of TRACK Trails and other partnering organizations.

• Support health care transition services and continue to explore ways to involve school nurses and expand training for providers.
• Expand advocacy and education efforts to promote inclusion of CYSHCN in community activities such as YMCA, parks and recreation, and Boys and Girls Clubs.

 

Oral Health Care for CYSHCN

 

The Commission’s Oral Health Workgroup will continue to focus on education and outreach to families and providers through their Dental Home initiative. Dental Home trainings for both families and providers will be offered and ways to expand efforts, including innovative marketing ideas and the addition of a Spanish version of the training, will be explored. In FY24, the trainings will also include more practical home dental strategies for families and caregivers, which has been a frequent request. Meaningful options for promoting the message that increasing dental home education decreases (dental) emergency room visits continue to be on the FY24 agenda. The Oral Health Workgroup’s monitoring of Medicaid Transformation issues will be maintained as oral health remains carved out and is often left out of the conversation. Careful scrutinizing of the process to end expansion coverage (put in place because of the COVID-19 pandemic) will be a priority.

 

Additional Strategies to Support CYSHCN

 

The SCCNC will continue to provide training, technical assistance, and support for 83 local and regional based CCHCs to develop strategies for the inclusion of CSHCN in the state’s licensed child care facilities in FY24. The SCCNC will also continue to participate in the statewide efforts of IECMH consultation as part of the EarlyWell Initiative. The SCCNC will continue to evaluate and monitor the impact of care delivered in child care settings to CYSHCN in partnership with medical homes and families from a series of learning collaboratives held for CCHCs across the state in FY24. The learning collaboratives and accompanying toolkit resources will be created by the SCCNC in collaboration with the NC CCHSRC regional CCHC coaches and staff, as well as subject matter experts on the given topics. The goal of the learning collaboratives is to provide professional development opportunities for CCHCs and provide resources and tools to use in supporting child care providers in caring for and inclusion of CYSHCN in early learning settings in partnership with the child’s medical home and specialty providers. Archived webinars and resources from previous learning collaboratives will be accessible to active CCHCs and will continue to be promoted. These archived webinars include the following topics: Inclusive and Accessible Environments; Specialized Enteral Feedings; Diabetes; Seizures; Allergies and Anaphylaxis; Asthma; Responsive Feeding; and Responsive Caregiving and Trauma Informed Practices. Additional CCHC learning collaboratives will be developed in FY24.

 

The SCCNC, SMD, and CCHSRC staff will partner with the Asthma Alliance of NC to update the Asthma Education Curriculum for Child Care Providers. This will be an additional resource that CCHCs can use when supporting child care facilities caring for children with asthma.

 

The DCFW/WCHS SPHGC will continue to provide additional trainings and technical assistance for multiple audiences including medical homes about children and youth with and at risk for genetic conditions in FY24. The SPHGC will explore updating a training which offered NCPD credits to provide guidance on how to take a family history/pedigree for nurses, physicians, and other interested health professionals. The SPHGC will continue to respond to additional requests from providers for other genetic topics and trainings in FY24 as part of ITP in-service trainings for CDSAs. The state GGAC, made up of professionals, families, and other partners with an interest in genetics, will continue to meet monthly to discuss genetic issues and implement components of the 2020 NC Public Health Genetic and Genomics Plan. Sub-committees will continue to meet to focus on actions and goals in each of the three priority areas: Genetic Services and Testing; Education and Communication; and Epidemiology and Surveillance. The GGAC and three Sub-committees will continue to be staffed by the SPHGC.

 

Following the recent execution of Amendment 1 to the Memorandum of Agreement between the NC Department of Information Technology and NCDHHS Application Support Services Provided by the Government Data Analytics Center, EHDI data from WCSWeb will be incorporated into the NC ECIDS during FY24. Activity for this year will include completion of WCSWeb enhancements in collaboration with the Preschool Development Grant to allow for data integration into ECIDS, requirements building for file structure, layout, and secure file transfer. Transfer of data to and from ECIDS is expected to begin during FY24.

 

The EHDI Program will enhance collaboration with other early childhood programs and initiatives to develop efficient and effective ways to expand hearing screening beyond the newborn period up to at least age three years. Additionally, the EHDI Program will work with educational programs serving D/HH children to focus on language acquisition and other language and developmental outcomes for D/HH children.

 

The EHDI Program will work collaboratively with the NC Division of Services for the Deaf and Hard of Hearing to establish and implement a new Deaf Role Model/Mentorship Program in NC. This program is designed to actively involve Deaf adults with families of young D/HH children to enhance/improve language development, provide additional resources for families to learn and use ASL, and provide opportunities for families to learn about and engage with the Deaf community. This program aligns with NCGS 143B-216.33, NCGS 130A-125, 42 USC 280g-1, NCDHHS Strategic Goals, NC ECAP, Joint Committee on Infant Hearing recommendations, and NC DHHS Federal Grants and Cooperative Agreements (HRSA-20-047 and CDC-RFA-DD20-2006).

 

The EHDI Program will be co-sponsoring the 2024 CARE Project + NC EHDI Parent Professional Collaborative in February 2024, and the theme of this conference will be Changing the Culture of Communication. This meeting brings families of D/HH children and the myriad of professionals who work with D/HH children together for a unique opportunity to learn and discuss important topics from both a family and a professional perspective.

 

The “D/HH Heroes” initiative will be expanded in FY24. The goal of D/HH Heroes is to help families build relationships with and learn from the experiences of D/HH adults in the community. The program will include D/HH Hero Trading Cards, where the D/HH adults share their unique superpowers (i.e., SuperReader, SuperFixItAll, etc.). The D/HH Heroes will attend family events for children who are D/HH and their families throughout NC.

 

NC Office on Disability and Health

 

In FY24, NCODH will continue to provide technical assistance to LHDs to increase accessibility and inclusion of CYSHCN by providing resources and on-site accessibility reviews as requested. NCODH will continue to partner with NC Emergency Management to ensure the needs of CYSHCN and families are included in state and local disaster planning, response, and recovery through involvement in workgroups and training. NCODH will prioritize the dissemination of emergency preparedness resources through networks to ensure families have access to the information. Partnerships will continue in areas related to sexual violence prevention, oral health care, and access to care with focus on expanding collaborative opportunities to promote CYSHCN priorities. NCODH will continue to build on its partnership with the Office of Health Equity and other departments within DHHS to ensure equity efforts are inclusive of CYSHCN and people with disabilities, specifically as it relates to physical access and communication access.

 

Ensuring Health Care Transition (HCT) Services

 

The DCFW/WCHS is committed to helping YSHCN and their families to plan and build the capacity to make successful transitions to adult health care, incorporating input from experienced FP and the YHA Team, and will employ the following strategies, among others, to make that happen. The DCFW/WCHS is still interested but has not had the capacity to explore work related to the development of an Extension for Community Healthcare Outcomes (ECHO) project that includes addressing health care transition and medical home. The plan is to try to explore this further when fully staffed in FY24.

 

Transition Work Group and CYSHCN Strategic Plan HCT Recommendations

 

Due to staffing issues in FY23, the Medical Home Work Group was only able to meet twice. However, DCFW anticipates staff during FY24 to restart Medical Home Work Group to address medical home broadly and include transition as a significant component of the medical home approach. Several DCFW/WCHS staff members on this workgroup (SMD, Adolescent Health Coordinator, Help Line Coordinator, and FP) will restart and coordinate efforts on medical home and HCT at the Section level.

 

In addition, the SMD will continue to try to promote communication and collaboration among academic and community providers working on HCT efforts for YSHCN. HCT will be included in at least one training for child health providers in LHDs related to adolescent health. TA and consultation provided by the state and regional child health nurse consultants and SMD to LHDs will continue to include strategies and resources about how to address HCT as described in the HCPG. The SMD and state school health nurse consultant will continue to explore how to include specific training opportunities to increase use of HCT strategies with school health nurse case management for chronic health conditions as part of regional meetings for lead school nurses and/or the annual school health nurse conference.

 

The FLS, Access to Care Specialist, SMD and other DCFW/WCHS staff in partnership with staff from ECAC will continue to explore strategies to address HCT. The Help Line for CYSHCN will continue to link families to resources related to HCT. The Help Line will collect data about how often transitions are discussed at all ages which includes HCT for adolescents.

 

HCT for Youth in Foster Care

 

The Fostering Health NC Program ended on June 30, 2023. As a result, the Transition Age Youth Work Group will no longer exist. The SMD will partner with the former co-chair who is a young adult who was formerly in foster care and DSS to incorporate HCT work into existing work groups in FY24. One idea is to embed into DSS’ design team     more efforts to increase engagement, retention, and active and consistent participation from multiple young adults who have been in foster care. This will involve including multiple state partners, specifically youth serving agencies (Youth Villages, Life Skills, Strong Able Youth Speaking Out (SAYSO), and Hope Center at Pullen, etc.) to help create educational materials and trainings for youth in foster care, youth exiting care or formerly in foster care, social workers, and foster parents as directed by DSS. These materials and trainings share strategies to increase use of shared decision making and informed consent about preventive health, sick care, mental health, and oral health services, and to ensure that youth have access to this care by having continuous comprehensive coverage through Medicaid when eligible, (Medicaid Direct vs Medicaid for Youth Formerly in Foster Care) and access tailored care management when eligible. The SMD, Minority Outreach Coordinator, and Access to Care Specialist and Commission for CSHCN will continue to be involved with providing feedback on the foster care specialized plan being developed by DHB and try to work with DSS to share information about the Support Act that allows youth who were formerly in foster care in other states to be able to be on Medicaid in NC until age 26. The DSS Well-Being Design Team will work with DSS to explore the need for additional agency training and  guidance to help social workers to support shared decision making  with young adults about how to choose a health care power of attorney and decide what young adults want related to life-saving measures in a living will using a document for advance care planning called Five Wishes: https://www.fivewishes.org/for-myself/.

 

The SMD, RCHNCs, and SCHNC will provide a training to child health providers in LHDs about children and adolescents in foster care that will include strategies to support HCT in partnership with DSS and other agencies. In addition, the Commission on CSHCN Behavioral Health Workgroup will continue to monitor and provide feedback on North Carolina’s Children and Families Specialty Plan.

 

Modifications to Contracts

 

The Medical Home and Transition Work Group will explore the feasibility of incorporating use of one HCT specific recommendation or tool (i.e., HCT policy or checklist) in contracts within the DCFW/WCHS to assist parents, youth, and practitioners in the transition planning process.

 

Prophylactic Antibiotics for Children with Sickle Cell Disease

 

The NC Sickle Cell Syndrome Program will continue to carry out newborn screening follow up efforts to infants that have an abnormal hemoglobin result when tested at birth in FY24. Sickle Cell Educator Counselors and CBO SC staff will contact, and schedule follow up appointments with parents to provide one-on-one information to parents and family members about sickle cell disease and its complications, will reiterate the importance of attending all pediatric, hematologist and other specialist appointments, getting childhood immunizations on time, giving penicillin to their newborn as prescribed to prevent bacterial infections, and knowing when to seek immediate medical attention.

 

During FY24, the Sickle Cell Education Consultant, in collaboration with Sickle Cell Educator Counselors and CBO sickle cell staff members, will continue to incorporate the use of the prophylactic antibiotics toolkit (prophylactic penicillin protocol) for parents that includes information about the importance of prophylactic antibiotics for children with sickle cell disease. Sickle Cell Educator Counselors will utilize the toolkit during initial contacts with parents who have a baby with sickle cell disease. The toolkit will also be used during annual assessment visits and as part of ongoing education provided to each family until the child reaches five years of age. Sickle Cell Educator Counselors will continue to document completion of these action steps as required in writing and in the WCS-Web Database.

 

The Sickle Cell Education Consultant, along with hematologists from two of the six sickle cell comprehensive medical centers, will complete work on the provider webinar with the purpose of educating them on the importance of prophylactic antibiotics for children living with sickle cell disease. The Sickle Cell Education Consultant and planning team will finalize work on a plan to promote the webinar and develop a post-webinar questionnaire to measure the increase in knowledge gained. The webinar will be conducted in fall 2023 and will be archived on the NC Sickle Cell Syndrome Program’s website.

 

CDSA Nutritionist Sharing Calls

 

In FY24, the PNC will continue biannual networking calls with regional CDSA nutritionists, and topics again will be chosen by the RDN’s with a continued focus on integration and coordination with the cadre of health professionals working with this birth to age three population.