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

 

As detailed in the Child Health Domain, the Title V Office supports a comprehensive, coordinated, family-centered system of care for all children regardless of whether they are CYSHCN or not. Many years ago, the DCFW/WCHS intentionally restructured personnel so that services and supports for CYSHCN are better integrated into all aspects of DCFW/WCHS programs and initiatives. The following specific services and programs, while described separately, represent the components of a system of care for CYSHCN supported by Title V funding in FY22 to improve the health of all children and decrease child deaths and morbidity.

 

NPM#11 – Number of children with and without special health care needs, ages 0 through 17, who meet the criteria for having a medical home

 

Promoting the medical home approach using team-based care is a core message within all DCFW/WCHS programs. Much work is being done to improve NPM#11 (Number of children with and without special health care needs, ages 0 through 17, who meet the criteria for having a medical home). Data for NC from the 2020-21 NSCH indicate that 36.3% of CYSHCN had a medical home as compared to 51.8% of children and youth without special health care needs (non-CYSHCN). National rates for this measure are 42% for CYSHCN and 47.7% for non-CYSHCN.

 

In addition to NPM#11, two ESMs have been selected to help monitor progress in this area: ESM 11.1 – the percent of CYSHCN who received family-centered care as reported in the NSCH and ESM 11.2 – the number of Medicaid, Managed Care Organization, or other meetings with partners attended by WCHS staff members with an agenda item related to medical home promotion.

 

Baseline data for ESM 11.1 was taken from the 2017-18 NSCH when 80.8% of parent respondents indicated that their CYSCHN received family-centered care. This increased to 85.4% in the 2018-19 NSCH and decreased back down to 80.3% in 2020-21. There probably is not a significant difference in these survey data, however, as the confidence intervals overlap for all three years. The state rate was higher than the national rate in the 2018-19 NSCH, but below it the other two years, with the national rate being 82.7% in the most recent 2020-21 NCSH. Baseline data for ESM 11.2 was obtained in FY21 based on what occurred in FY20 when there were eight relevant partner meetings with an agenda item related to medical home promotion. A goal of increasing this to sixteen meetings by 2025 was set. In FY22 there we at least 17 relevant meetings where medical home promotion was discussed.

 

Several DCFW/WCHS staff members and Family Partners (FPs) continued to participate in the Children’s Complex Care Coalition of NC (C4NC) advisory committee that started as funding from a grant from the National Center for Complex Health and Social Needs. This effort continued without grant support   to be led by UNC and Duke and included several other academic centers, Legal Aid of NC, additional state and local agencies, health professionals, community-based organizations, and families of CYSHCN. The C4NC Advisory Committee continued to rally around its vision to have family-centered, integrated systems of care that enable all children with complex health needs to thrive. During FY22, the Advisory Committee met quarterly to continue to discuss the key priorities and actionable recommendations to address scope and scale of care for children with complex needs in NC. These priorities were generated from the virtual conference series called Path for Better Health for Children with Complex Needs (PATH4CNC) for health professionals, families of CYSHCN, community and state agencies which was held in January-March 2021. The convenings identified seven themes (Training and Education, Stigma, Family Support and Empowerment, Care Coordination, Cross Sector Collaboration, Access, and Funding and Reimbursement) which impact the use of the medical home approach and health care transition.  More information can be found in the resulting white paper Improving Systems of Care for Children with Complex Health Needs in North Carolina.

 

Late in FY22, the DCFW SMD met with staff for two exploratory meetings to investigate developing a medical home training. Drafting both a family-focused module and a provider-focused module about building and maintaining partnerships between families and providers including information about health care transition was considered.

 

Education, Training, and Support for Providers Regarding Medical Home

 

In FY22, information to support the medical home approach and partner with medical homes was included in Child Health Program live and archived webinars scheduled throughout the year for LHD clinical staff and as part of the 2021-22 Child Health Training Program (CHTP). The DCFW SMD and SCHNC worked with NC DPH Office of the Chief Public Health Nurse to include information in trainings for LHDs that included guidance related to required child health services and telehealth flexibilities for LHD providers to deliver a number of services (i.e., newborn home visiting, CMARC, and well child services) that increased access to care in a medical home or supported access to other providers who serve as medical homes. Bright Futures forms continued 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 continued 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 DCFW SMD used opportunities with the NCPS (weekly Solution Share and practice managers listserv), NC Medical Society Leadership College Program, and other events to promote the delivery of care for well and sick care using a family-centered medical home approach especially with CYSHCN during the COVID-19 pandemic. The SMD specifically always included information about the Children with Special Needs Help Line. The SMD tried to stay current on Medicaid policies related to telehealth and vaccine coverage and when changes occurred in order to provide TA and consultation to providers in LHDs, and pediatric practices in order to increase access to whole child health care in the medical home for children. The SMD also continued to try to explore interest from providers and agencies about having the Family Liaison Specialist (FLS) contact them to discuss the use of Parents as Collaborative Leaders training to help them increase engagement of families in the care in their agencies. NC Office on Disability and Health continued to offer accessibility reviews for LHDs at their request to enhance the care of CYSHCN and to assist in achieving accreditation requirements.

 

The SMD provided multiple presentations for pediatric providers in LHDs and other settings serving as medical homes or working with medical homes caring for children during the pandemic which included: the status of COVID-19 cases and increased risks for COVID for CYSHCN; ongoing school and child care guidance changes which impact CYSHCN; the clinical guidance changes related to use of and availability of COVID-19 vaccines for children and youth and especially those who are higher risk with special health care needs (i.e., immunocompromised); mental health; use of masks for CYSHCN; and resources to address special nutrition needs and the impact of food security on CYSHCN.

 

To increase the percentage of families of CYSHCN who report that their children receive family-centered care, the DCFW/WCHS continued several programs and activities during FY22. The CMARC program, which serves Medicaid and non-Medicaid children birth to five years of age, continued its work to improve health outcomes for newborns, infants, and young children. The DCFW/WCHS continued its partnership with the DSS, DMH/DD/SAS and other partners to provide care coordination for infants exposed prenatally to substances. In addition, the CMARC program continued 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 continued to identify children and families whose health could be impacted by social determinants and connected them to community resources, which is amplified by NCDHHS HOP efforts to address non-medical drivers of health as part of NC Medicaid Managed Care and the development of NCCARE360, a statewide coordinated care platform to link individuals to resources. Webinars and care pathways were developed and made available for CMARC care managers to help them partner with Advanced Medical Homes, Clinically Integrated Networks, and Health Plans to care for children with a variety of conditions such as asthma, sickle cell, foster care, and neonatal abstinence syndrome.

 

Title V funding continued to be used to support CMARC services although the CMARC Program Nurse Consultant was vacant during FY22. Recruiting efforts for the position continued. The CMARC care managers 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. DCFW/WCHS staff members collaborate 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 outreach team experienced a vacancy in the DCFW/WCHS Minority Outreach Coordinator position during some of FY22 requiring work to be maintained by other staff.

 

DCFW/WCHS staff members continued to provide support to the NC Commission on CYSHCN and its workgroups (Oral Health and Behavioral Health) in FY22. The Commission’s nine members were appointed by the Governor and met bimonthly to review and make recommendations related to issues affecting CYSCHN. Support included the preparation of reports, gathering data, and explaining the implications of proposed policies that keep these entities informed and focused on the interests of children and families. The DCFW/WCHS also fostered a Title V Parent Representative to participate on the Commission and to attend the Behavioral Health and Oral Health workgroups.

 

After the launch of NC Medicaid’s Standard Plan (which covers the majority of Medicaid children, including CYSHCN) in FY22, the Commission invited representatives from the five Prepaid Health Plans to join meetings to discuss their care management services and provide feedback and recommendations from families and providers. The Commission also reviewed and provided feedback on the ongoing development of the Tailored Plan, which will serve children and adults with intellectual and developmental delays and complex behavioral health needs. Quality care management, provider capacity (particularly regarding behavioral health), and barriers for families of CYSHCN were key issues among stakeholders. The Commission’s longstanding Behavioral Health Workgroup met monthly (as needed) to consider issues relevant to children and youth with special behavioral health care needs in the state. It responded to requests for information from the Commission, kept apprised of ongoing developments in behavioral health care from various sources and reported back to the Commission at all meetings. The Oral Health Workgroup continued to provide recommendations to promote access to a dental home for CYSHCN to encourage whole child health. The WCHS employed two part-time program consultants, both dental hygienists, to conduct presentations for dental providers. Dental providers were offered two different presentations to encourage inclusion of CYSHCN in their practices by addressing access needs and clinical strategies. The first discussed practice accommodations and strategies to support CYSHCN. The second presentation, co-presented with the NC Office on Disability Health, provided additional information on the Americans with Disability Act and its impact on dental providers and practices.  Both presentations offered continuing education credit to dental providers. The Oral Health Workgroup’s initiative to provide education about the importance of a dental home resulted in 21 trainings reaching 534 healthcare providers in FY22.

 

The Commission continued to monitor the anticipated renewal of the Community Alternatives Program for Children (CAP/C) Waiver in FY22. A CAP/C subcommittee was proposed and sanctioned by the Commission to highlight current barriers for families and explore possible pathways for systems’ change. Representatives (including a physician and two registered nurses) from a hospital that provides care for children with complex medical needs and DCFW/WCHS staff members regularly attend the quarterly CAP/C workgroup meetings. The subcommittee partnered with the Community Alternatives Program Waiver Operations Manager to streamline the complex CAP/C referral/application process using a Commission member’s hospital as a pilot site. Additionally, the CAP/C subcommittee elevated the urgent need for highly skilled healthcare workers providing nurse attended care.

 

The CYSHCN Access to Care Specialist participated in eight 90-minute ECHO (Extension for Community Health Outcomes) sessions to address families with Intellectual/Developmental Disability (I/DD) who struggle to access comprehensive, updated information while navigating multiple complex systems in our state. Subject matter experts from local, regional, and state organizations shared their knowledge and expertise with a community of providers who support families across central North Carolina. Participants were linked to mentors specializing in service coordination, social work, and resource navigation.

 

The CYSHCN Help Line Coordinator presented to several community medical practices as part of an academic health system to increase use of the Help Line and also to increase conversations about issues coming up for CYSHCN in medical homes in the community in December 2021. The SMD connected the CYSHCN Help Line Coordinator with two additional rural health pediatric practices and with the Cherokee Indian Hospital based pediatric practice. Efforts stalled when the CYSHCN Help Line coordinator left for a new position. Expanding the Help Line outreach into medical practices across the state remained a goal for the SMD because it is beneficial and encourages new partnerships for all those working with CYSHCN.

 

The SMD served on the Medical Home Work Group with the Family to Family Health Information Center agency in NC as part of the statewide EarlyWell Initiative to address social emotional health in children birth to eight years of age. The Medical Home Work Group generated a white paper and recommendations for how to best increase the knowledge, skills, and abilities of medical homes to promote relational health and to identify and address social emotional concerns and social drivers (including structural racism) using a family-centered equity lens. This included value-based payment strategies to compensate medical home providers for meaningful and ongoing family engagement such as serving as family advisors.  An important report, From Equity to Issue Campaigns: The Next Stop on the Road Map to Childhood Mental Health in North Carolina, was released in June 2022 that was designed to organize and categorize the problems and solutions identified by families, Title V staff and others on the advisory committee, and other stakeholders.

 

Education for Families Regarding Medical Home

 

Many families access the NCDHHS CYSHCN web page for Medical Home materials. The web page maintains current information and reliable resources that address several key topics including: Diagnosis and Healthcare, Insurance and Financial Support; Family Support; Education Resources; Transition to Adulthood; and Advocacy/Legal. Web page links and content were updated by the Help Line Coordinator, who received ongoing feedback from families. Messaging about renewing Medicaid coverage, providing feedback on Medicaid managed care (contact the Ombudsman), and the CAP/C Waiver Renewal was promoted on the CYSHCN webpage.  Additionally, FPs contributed family stories about their personal journey and engagement in DCFW/WCHS activities.

 

The DCFW/WCHS continued to maintain a state toll-free Help Line (available Monday through Friday) and email account to assist families and providers with services for CYSHCN in FY22. The Help Line is staffed by a 1.0 FTE with backup provided by WCHS staff. The CYSHCN Help Line contact volume for FY22 was 486 inquiries. Families and caregivers of CYSHCN reflect 73% of the call/email volume. Most Help Line users (80%) utilized direct phone contact which allows callers to talk directly with staff. Ninety-four percent of Help Line users communicated in English, 5% in Spanish, and one caller spoke Swahili. For their child’s primary insurance, 73% of Help Line users reported Medicaid or Health Choice, 21% private insurance, and 6% reported their children were uninsured (reduced from 10% in FY21).  Almost half of the help line users indicated their child’s disability was a mental, behavioral, or neurodevelopmental disorder (including Autism, IDD, ADHD, or a behavioral health need). The age group of the child the Help Line user was inquiring about was consistent with the prior FY: 38% from birth to 5 years old, 29% from 5 to 11, 21% from 12 to 18, and 12% over 18 years old. The top three topics discussed with Help Line users were health insurance (25%), financial resources (19%), and exceptional children’s services (16%).  Help Line users indicated they learned about the Help Line using various methods: 41% via the website, 21% as a referral from a state/local agency, and 17% had previous experience with the Help Line.  

 

Help Line users were invited to complete a services satisfaction survey and sent a weblink. The Help Line services continually receive ratings between 90-100% on service indicators including: timeliness of response from the Help Line staff, how well questions/concerns were addressed, and respect shown for the user’s opinions/feelings. Help Line callers reported:

 

• “(The Help Line staff person) was so nice and knowledgeable. After our conversation, she immediately sent me an email with a ton of resources. I am so thankful and appreciative.”
• “I felt like I was drowning--and (the Help Line staff person) gave me a life raft! I will be reaching out to these resources! Thank you!” 

 

Outreach efforts to promote the awareness and access of Help Line services utilized several strategies. Supplemental Security Income (SSI) applicants, ages birth to 18 years, received direct notification about the Help Line as a resource which in FY22 reflected 1,244 families. The letter sent to SSI applicants was reviewed and rewritten to include information about COVID-19 vaccines for children. WCHS staff shared Help Line information at stakeholder meetings, presentations targeting families of CYSHCN and providers who work with them, or via exhibits at professional conferences or local community events. Help Line informational materials (available in English and Spanish) were promoted electronically (through email distribution and the CYSHCN website) and in hard copy. A total of 3,218 Help Line info cards were distributed via mail (2,336) and at outreach events (882) in FY22.

 

Through the Commission’s Oral Health initiative, families of CYSHCN were offered training that focused on effective ways to partner with their dental provider for a more positive, lifelong dental experience for their child. This presentation was co-presented with a dental hygienist consultant and a WCHS family partner. In FY22, six virtual presentations addressing families of CYSHCN were completed, reaching 92 families.  Finding the Right Dental Home for Your Child or Youth with Special Health Care Needs checklist is also shared with family members to assist them in finding the dental home that best suits their child’s needs. All of the attendees felt their confidence level (defined as increased ability to share information, gain ideas for accommodations and strategies, and obtain resources related to oral health for CYSHCN) improved. Participants reported:

 

• “I was given a lot of good ideas for simple things to ask for that can make a big difference.”
• “I learned how to advocate and that there are places out there willing to allow some of these accommodations.”

 

Increasing Family Engagement

 

Cultivating family and youth engagement between state Title V programs is a continuous journey. The DCFW/WCHS is committed to authentic involvement and engagement amid its Title V work. Fostering family and youth partner engagement involves developing genuine relationships with family partners, recognizing the contributions of their knowledge and skills, along with nurturing their natural desire and drive to give back and make a difference for other families or youth. The DCFW/WCHS maintains a multi-faceted engagement framework that offers family and youth partners a variety of opportunities to intersect with and contribute to program planning, activity development, implementation, and evaluation. Alongside those who prefer to contribute as volunteers, 36 FPs were reimbursed for 462 documented hours in FY22 towards DCFW/WCHS program efforts. The FLS position experienced a vacancy beginning in November 2021 requiring other staff to support family engagement efforts. In addition, the DCFW/WCHS continued to employ a part-time Parent Consultant who served the EHDI Program. The CYSHCN Access to Care Specialist role, briefly vacant from August through October 2021, provided technical assistance to the FPs in addition to managing the FP reimbursement system. Activities conducted by the Youth Health Advisor Team are described in the AH Domain Annual Report.

 

The DCFW/WCHS FP Steering Committee, which represents nine family partners with extensive experience in NC’s System of Care and DCFW/WCHS activities, continued to inform and add value to program development within supported activities for both family partners and DCFW/WCHS staff members. The Committee met four times in FY22 and participated in bidirectional communication regarding topics including parent training cadre updates, the AMCHP scholarship application process, Medicaid Transformation, and DCFW/WCHS staff roles and transitions.

 

The DCFW/WCHS Parent Leadership Training Cadre reflects a peer-to-peer empowerment training model implementing evidenced informed/based curricula. The nationally recognized Parents as Collaborative Leaders (PACL) curriculum continues as a cornerstone leadership training. The PACL trainings are provided virtually in English and Spanish at no cost to parents, either as a series or as individual modules according to the parents’ needs. FP trainers presented 22 trainings (13 in English and nine in Spanish) to 167 parents and caregivers of CYSHCN across the state during FY22. One hundred percent of attendees felt the training contributed to their knowledge and skills for leadership. Participants reported:

 

• “I expect to apply what I learned at the training to guide parents I work with in becoming leaders.”
• “The training helped me to see there is a role for parents both in history and the present.”
• “Transmitiré la información para apoyar a los nuevos padres de niños con necesidades especiales”. (I will pass on the information to support new parents of children with special needs.)

 

The DCFW/WCHS continued to invest in Title V family leadership development by sponsoring family partners to attend national conferences, specifically AMCHP (three attendees) and the National EHDI (three attendees) conferences, both virtual in FY22. These conferences allowed families to expand their existing family partnerships internal and external to NC and to broaden their comprehension of Title V programmatic opportunities. The virtual platform offering minimized barriers for families of CYSHCN that may have prevented their in-person attendance. The attending family partners reported back to either the FP Steering Committee or the DCFW/WCHS EHDI Advisory Committee on what they learned and how they plan to use the information to improve the lives of CYSHCN on a local or state level. The attendees enhanced their participation in DCFW/WCHS committees, workgroups, and activities by promoting and applying information gained through attending the conferences.

 

Other FP engagement opportunities during FY22 included:

• Joining the (FLS position) interview team
• Reviewing newly developed genetics factsheets for families
• Participating on the NC Triple P Partnership for Strategy and Governance (PSG) /NC Learning Collaborative (NCLC)
• Contributing to the MCH Block Grant review process
• Partnering with the PMC to share COVID vaccination materials with communities
• Attending DCFW/WCHS Meetings and Town Halls
• Co-chairing the NC GGAC
• Co-Chairing the NC EHDI Advisory Committee, and
• Serving as Parent Mentors on the NC EHDI Parent Support Team

 

Outreach Efforts

 

The DCFW/WCHS outreach team (comprised of the Minority Outreach Coordinator, Help Line Coordinator, and the CYSHCN Access to Care Specialist) directed outreach efforts in low resource geographic areas in addition to marginalized, disenfranchised populations that would benefit from accessing NC’s public health insurance options. The outreach team met monthly with the Best Practices Unit manager to discuss optimal outreach strategies, using state Medicaid enrollment data to focus on county populations for stakeholder engagement and outreach, and to develop updated outreach materials.

 

Attending state and community stakeholder outreach events remained mostly virtual in FY22 due to the COVID19 pandemic. With a new Minority Outreach Coordinator in place, full capacity and innovative ideas positively influenced outreach function. During her tenure, the Minority Outreach Coordinator collaborated with a Latinx Youth Health Advisor group member to develop a PowerPoint presentation that addresses the need to tailor Children’s Health Insurance Program promotion to youth, educate on transition of care from pediatric to adult, and taking charge of their own health. Focused efforts by the Outreach Team utilizing the virtual climate to reach priority populations resulted in 137 outreach events reaching 3,215 participants. Specific outreach activities addressed Smart Start, Innovative Approaches, LICCs, Food Banks, churches, and community health centers in counties with a high rate of uninsured children. Activities included sending materials for specific events (exhibits), sending materials, and joining meetings (collaboration and consultation), and presenting information on slide decks (presentations). Outreach staff prepared and mailed information packets to site contacts for inclusion in their distribution efforts; A total of 4,382 (English/Spanish) NC Medicaid/NC Health Choice informational flyers were distributed in FY22. Members of the Outreach Team participated in an array of trainings for professionals who serve minority populations to inform their outreach efforts by networking with potential partners, including webinars that addressed progress with Medicaid managed care, learning about cultural events and festivals, and gaining insights into barriers faced by families trying to access health care.

 

To specifically reach families of CYSHCN populations, the outreach team piggybacked abbreviated NC Medicaid/Health Choice presentations onto (virtual) PACL training modules.

 

Outreach staff, in cooperation with the NC Pediatric Society, continued to facilitate the quarterly NC Coalition to Promote Children’s Health Insurance. The Coalition is a forum for statewide partners to address topics that can directly impact marginalized or vulnerable populations who would most benefit from enrollment and services available via NC Medicaid and Health Choice. Regular attendees represent:  DCFW/WCHS, Fostering Health NC, Office of Rural Health, Office on Refugee Health, NC Association of Community Health Centers, NC Child, NC Justice, NC Budget & Tax Center, Community Care of North Carolina, Family Resource Center South Atlantic, and the NC Partnership for Children. Coalition meeting topics included rich discussion on the NC transition to managed care, the Medicaid Ombudsman program, and post public health emergency plans for Medicaid recipients.

 

Innovative Approaches Initiative

 

FY22 marked the third year of the three-year (2019-2022) funding cycle for IA. The DCFW/WCHS continued to support four LHDs (serving ten counties) to assess and improve the local systems of care for CYSHCN through their IA initiatives. IA sites continued to work directly with families to implement action plans addressing community systems of care for CYSHCN. IA received a Best Practices designation from AMCHP in November 2018. To continue to build the evidence for IA, the initiative completed year three of a rigorous process evaluation to link effectiveness in improvement of NOM 17.2 and NPM’s 6, 11, 12, and 15. The evaluation team from UNC Chapel Hill presented their final report in May 2022. The evaluation results suggest that overall, IA strengthened the community capacity to serve CYSHCN through systems changes. Community members and partners were overwhelmingly positive about the value of IA in their communities, specifically related to partnership development, advocacy, and resource development. When compared to other families in NC, IA families reported more shared decision making within a medical home, higher rate of developmental screening, and well-coordinated health care transitions.

 

All IA sites continued to utilize a part-time Parent Outreach Coordinator position whose primary purpose was to perform outreach activities to engage parents of CYSHCN and to recruit their active involvement in the IA initiative. In FY22, the Parent Outreach Coordinators continued virtual meetings as a result of COVID-19 and provided communications through multiple platforms (Facebook pages, websites, communication portals, etc.) to increase awareness about educational opportunities, meetings, and IA projects.

 

Parent Advisory Councils (PAC), a diverse group of parents and guardians of CYSHCN, maintained a commitment to advocacy and educating other families, agencies, and health care professionals on issues that affect CYSHCN. PAC members met monthly with service providers and agencies to promote collaboration and make recommendations to the IA Steering Committee.

 

In FY22, the Cabarrus, Gaston, Rowan, and Union IA site focused efforts on building capacity within health care communities to better serve CYSHCN and equipping youth with special health care needs for successful transitions. A toolkit was developed for providers to encourage additional training related to serving CYSHCN and promote health equity. Dental providers with Cabarrus Health Alliance participated in a Dental Home for Children and Youth with Special Health Care Needs training provided by a retired dental hygienist with DCFW/WCHS and NC Office on Disability and Health staff members. The texting platform, Text4YourHealth, developed to address health care transition for youth and young adults with intellectual and developmental disabilities was translated into Spanish and piloted among 18 youth with special health care needs. Transition to independent living after high school was also addressed with the development of the Roadmap to Meaningful Employment & Independence. This resource is available in English and Spanish and was incorporated into the transition planning in four local school systems.

 

The Henderson County IA continued its focus on its accessibility initiatives. Its ongoing collaboration with Kids in Parks/TRACK Trails, local parks and recreation, parents, nonprofits, and the health department continued with Accessibility Reviews on trails in Henderson County. Seven reviews were completed that offered recommendations for ways to modify outdoor spaces to increase inclusivity for CYSHCN. In FY22 TRACK Trails was accepted into AMCHP’s MCH Innovations Database as a “Cutting-Edge Practice.” The TRACK Trails project has not only encouraged CYSHCN and their families to be more active but also resulted in expanded partnerships and plans for additional accessible and inclusive elements in local parks. TRACK Rx works in conjunction with TRACK Trails to encourage clinical providers to prescribe the use of trails to CYSHCN. TRACK Rx program continued to expand into LHDs during FY22.

 

The Henderson IA also focused on training and improving resource materials for parents of CYSHCN. Training related to Trauma-Informed Practices and Triple P continued through FY22. Care Notebooks were disseminated to more than 100 parents of CYSHCN with plans to develop this resource in an electronic format and translate into Spanish.  IA continued to promote the CDC’s Learn the Signs, Act Early materials among childcare subsidy, early learning programs, preschools, care management, and nurse visiting programs.

 

During FY22, all four IA sites experienced significant staffing transitions and vacancies that impacted the reporting and full realization of system changes. The Granville/Vance site was without an IA Coordinator for the first half of FY22, and the new hire was not able to complete some of the original goals before the end of FY22. The IA site in Robeson County experienced staff vacancies throughout FY22 and was unable to fill positions before the end of FY22. The IA Coordinators in both Cabarrus and Henderson IA sites transitioned out of their roles in April 2022. Staff hiring and training for those sites minimized the ability to complete activities for Q4 of FY22.

 

Additional Strategies to Support CYSHCN

 

The SCCNC working collaboratively with the NC CCHSRC, continued to provide training, technical assistance, and support for 78 local CCHCs to develop strategies for the inclusion of CSHCN in the state’s 5,605 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 those serving infants and children with special health care needs.

 

During FY22 the SCCNC in collaboration with the NC CCHSRC offered monthly professional development opportunities on various topics pertaining to the safe inclusion of CSHCN for children ages 0-5 enrolled in early learning settings. CCHC Learning Collaboratives topics included Inclusive and Accessible Environments, Allergies and Anaphylaxis, Seizures, Diabetes, and Enteral Feedings. The CCHC Learning Collaboratives were designed to provide foundational knowledge of a given topic by a subject matter expert followed by an opportunity to experience peer to peer learning and explore practical application. The SCCNC and DCFW SMD engaged with physician partners from UNC-CH, ECU and Wake Forest University who served as subject matter experts. On average, 48 CCHCs serving child care facilities across the state participated in the monthly learning collaboratives. The SCCNC and NC CCHSRC began planning for a Learning Collaborative on the topic of asthma for FY23.

The SCCNC continued to participate as a partner with the EarlyWell Initiative to address the social and emotional health of children birth to third grade, including children enrolled in early care and education settings.

 

The EHDI Advisory Committee continued meeting quarterly and assisted with outreach efforts and program evaluation. EHDI Program staff increased collaborative efforts with other programs and agencies such as CMARC, Family Connects, EIB, MIECHV, NFP, 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.

 

To address the 2019 Joint Committee on Infant Hearing best practice guidelines related to risk factors and late onset and progressive hearing loss, a new quality improvement effort focused on the creation of a Parent Education Risk Factor Card was designed. PDSA testing was completed at a few NICUs across the state. After PDSA testing, NC-EHDI decided to make the parent education card available statewide.

 

The EHDI program worked with The CARE Project to provide opportunities for parents and professionals to support each other and gain greater understanding of the emotional journey of children who are deaf or hard of hearing and their families. NC-EHDI sponsored two in-person and one virtual Family Fun Day events. The in-person events offered families time to enjoy being together, making connections and participating in fun activities. CARE Connect, a Facebook Live program was continued focusing on timely topics of interest to families of children who are Deaf/Hard of Hearing (D/HH).

 

NC-EHDI sponsored a virtual The Care Project Parent Professional Collaborative in February 2022. This event brought 80 parents and professionals together for a two-day learning experience covering a range of topics such as Mental Health & Self Care, Social Determinants of Health & Adverse Childhood Experiences, and Finding Joy.

 

NC-EHDI hired a part-time Spanish speaking parent consultant to increase outreach and engagement with the Hispanic community. NC-EHDI team members are collaborating with partners on a learning community in the Mecklenburg/Union County area that is focused on the needs of the Hispanic population in the area.

 

NC-EHDI, in consultation with the EHDI Advisory Committee, parent partners and other key partners developed a plan to address diversity and inclusion in the EHDI system. NC-EHDI will utilize departmental wide resources/programs and five priority strategies to reach our goal: 1) Utilize data, research, and evaluation to identify and respond to the causes and consequences of health inequity; 2) Create opportunities for engaging priority populations in planning, implementing, and evaluating EHDI strategies; 3) Collaborate with partners working to positively impact health of priority populations and the determinants of health; 4) Build capacity of EHDI staff to advance health equity; and 5) Use tailored communication strategies to educate partners. EHDI’s initial focus area will be the growing Hispanic/LatinX population.

 

The EHDI Parent Consultants continued coordination of the EHDI Parent Support Team to offer parent-to-parent support for families of children who are D/HH. The team is diverse in race/ethnicity, communication mode, language (American Sign Language [ASL], Spanish), geographical location, and type of hearing technology used (hearing aids, cochlear implants, no technology). Three new mentors were added to the team during this reporting period. The EHDI program partnered with the Early Learning Sensory Support Program for Children with Hearing Impairment to enroll families in this support program.

 

The NC-EHDI team continues to look for ways to collaborate with and educate partners on these important issues that impact our work. Three sensitivity trainings focused on newborn hearing screeners, pediatric audiologists, and early intervention providers, include information and resources on cultural competency/humility, implicit/unconscious bias, social determinants of health, and health equity. Trainings also include family stories both in English and Spanish. Open captioning is provided to make the trainings more accessible.

 

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 enhanced collaborations with educational programs serving these children with a focus on language, educational, and literacy outcomes.

 

The ECIDS Governance Council 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. The MOA between the NC Department of Information Technology and NCDHHS for support services provided by the Government Data Analytics Center was amended in May 2022 to add NC EHDI data into ECIDS.

 

The AAP NC EHDI Chapter Champion, who is deaf,: 1) participated on the EHDI Advisory Committee; 2) provided consultation and support to new learning communities created across the state; 3) continued to provide feedback on program materials and correspondences targeting the medical home; and 4) consulted with the NC Pediatric Society and the DCFW/WCHS PMC to identify strategies to share hearing loss information with its members, including presentations at meetings.

 

The EHDI Program’s Parent Consultants continued to engage parent partners in EHDI activities. Additional parent members were 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 expanding the infrastructure for hearing screening beyond the newborn period; 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 and conferences.

 

In addition, the NC Title V Program continued 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 continues to coordinate a state-wide Cytomegalovirus (CMV) workgroup to provide education to healthcare providers and the general public on CMV in efforts to increase awareness.

 

NC Office on Disability and Health

 

The NC Office on Disability and Health (NCODH) continued to integrate the health concerns of persons with disabilities, including CYSHCN, into state and local public health programs in FY22. This integration helped to promote access to care, inclusion and health equity within program practices and policies in collaboration with state and community stakeholders.

 

NCODH works with LHDs to increase accessibility and inclusion for CYSHCN by providing information, technical assistance and resources and conducting on-site accessibility reviews. Due to the COVID-19 pandemic, NCODH was unable to travel for on-site accessibility reviews for the first part of FY22 but resumed on-site accessibility reviews in April 2022. NCODH provided two on-site accessibility reviews in FY22, with many more scheduled for FY23. As result of recommendations made by NCODH, the North Carolina Local Health Department Accreditation Program recently began requiring LHDs to conduct an accessibility assessment within two years of accreditation, and NCODH is able to assist with these assessments.

 

Involvement in emergency preparedness efforts continued in FY22 as the NCODH strengthened the partnership with NC Emergency Management (NCEM) and adjusted work to include COVID-19 Response. NCODH participated in efforts to improve preparedness efforts for children and adults with disabilities through involvement in statewide workgroups including C-MIST (Communication, Maintaining health, Independence, Support and Safety, and Transportation) Advisory Committee, Shelter Accessibility Workgroup, and FAST (Functional Assessment Support Team) Workgroup. In FY22, NCODH continued to serve as a FAST Coordinator and trained additional FAST members. NCODH worked to ensure families of CYSHCN received timely information and updates related to the COVID-19 Response through regular partner updates with NCEM.

 

NCODH continued collaboration with the NC Sexual Violence Prevention Team to promote the inclusion of individuals with disabilities in sexual health and sexual violence prevention in NC. As a part of this committee, NCODH is a member of the K-12 workgroup to further address sexual health education needs of CYSHCN. As a result of these workgroups, additional partnerships were established with NC DPI, Carolina Institute for Developmental Disabilities and NC Coalition Against Sexual Assault.

 

NCODH collaborated with other partners including the NC Commission on CSHCN Oral Health Workgroup and the I/DD Dental Access Workgroup to ensure that the oral health needs of CYSHCN are being addressed. NCODH participated in presentations for dental providers, specifically addressing accessibility needs and ADA compliance within dental practices.

 

NCODH continued collaboration with the NC Office of Health Equity (formerly the Office of Minority Health and Health Disparities) to address inclusion of people with disabilities and CYSHCN in efforts to address health equity.  NCODH continued to collaborate with NCDHHS Historically Marginalized Population (HMP) Workstreams to ensure the needs of people with disabilities and CYSHCN were addressed during the COVID-19 Response. In FY22, NCODH moved to a leadership position within HMP workstreams and continued working to promote access and inclusion of people with disabilities and CYSHCN. Resources for CYSHCN were included in multiple toolkits, websites, and on flyers; public facing communication materials were reviewed for accessibility and inclusion; and community-based organizations serving people with disabilities and CYSHCN were included in state-wide and local outreach efforts. To promote equity through access, NCODH led the development of the document Providing Access for Everyone: Accessibility for COVID-19 Vaccination, Testing and Treatment Sites which was widely distributed and used by community-based organizations to improve access.  NCODH provided multiple trainings in FY22 to community-based organizations, community health workers, and providers to increase awareness of the physical and communication access needs of children and adults with disabilities in context of COVID-19 Response efforts.

 

Ensuring Health Care Transition Services

 

One component of improving access to coordinated, comprehensive, ongoing medical care for CYSHCN is to ensure that YSHCN receive the services necessary to make transitions to adult health care. The DCFW/WCHS has set an objective to improve this indicator as measured through the NSCH by 30% from a 2018-19 baseline of 16.5% to 21.5% by 2025. The 2019-20 NSCH results showed that NC remained at 16.3% and 2020-21 NSCH results show an increase to 20.4% of YSHCN receiving transition services. Regardless, much work needs to be done to ensure that YSHCN in NC are able to transition to adult health care more easily. Even with combining two years of survey results, rates for subgroups by race/ethnicity are not reliable.

 

Transition Work Group and CYSHCN Strategic Plan Health Care Transition Recommendations

 

During FY22, the IA Director dedicated a portion of her time on Health Care Transition (HCT) and coordinated the work on health care transition at the Branch level. The DCFW/WCHS Transition Work Group, including family representatives from the BFPs, met and reached 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 Transition Work Group invited the Got Transition center to speak and review their website materials. The PMC participated in a national group with several states (i.e., Texas, Wisconsin, New Mexico) and Got Transition staff to explore how to address health care transition in the school setting and especially with Individualized Education Programs (IEPs). This national group began to explore examples of policy language to help increase and support special education settings in each state. The CYSHCN web page remained a source of information on transition and was updated to include additional resources on a regular basis.

 

The SMD continued to try to promote communication among academic and community providers working on HCT efforts for YSHCN (I.e., Duke, ECU, Wake Forest Baptist) and with DCFW/WCHS programs to share best practices on a group listserv. The Help Line for CYSHCN linked families to the ECAC, GotTransition.org, and the AAP for transition information and resources. The SHC program continued 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. SHC’s ensure that all students enrolled or served have a medical home and dental home. Results of all visits to the SHC and recommendations for follow-up shall be shared with students’ medical homes within 24 to 48 hours of visiting and documented in their medical records (pursuant to the release of information permissions as required by FERPA/HIPAA). For chronic physical and mental health conditions, shared plans of care between the SHC and medical home should be used whenever possible. 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 increased efforts to work on HCT skills with adolescent mothers served by their programs or whose children are served by these programs. additional efforts related to health care transition in the C4NC and Path4NC efforts are included in the earlier medical home section of this domain.

 

Health Care Transition for Youth in Foster Care

 

The SMD continued to co-chair the Transition Age Youth (TAY) Work Group with staff members from Fostering Health NC in FY22. A young adult with lived experience has served as co-chair since March 2022 and has helped to plan for all of the bimonthly meetings and participated in five of these meetings. Additional DCFW/WCHS staff members served 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 included developing and disseminating widely this one-page flyer entitled Ensuring Health for Young Adults Formerly in Foster Care. This flyer was vetted by many members of the workgroup and others including the young adult cochair, the Child Welfare Family Advisory Council, and several young adults involved with the Hope Center at Pullen. Through the work group, DCFW/WCHS staff members continued to collaborate with LINKS, NC Child, Youth Villages, Life Skills, CCNC, Medicaid, Strong Able Youth Speaking Out, and other partners to discuss types of educational resources for transition age youth on transitioning to an adult medical home and applying for Medicaid. One priority area for this work group was a review of materials for youth and young adults in foster care or formerly in care to help them to choose if they want a health care power of attorney. Five Wishes was chosen and NC state DSS began working on the process to purchase this for use with youth in foster care and to ask Fostering Health NC TAY Work Group to help with training a variety of professionals from groups mentioned already.

 

Modifications to Agreement Addenda and Contracts

 

Due to COVID-19 priorities and staff shortages, the DCFW/WCHS Transition Work Group was not able to meet often and explore contract language options to include HCT. However, during FY22, the Child Health Program continued to offer TA related to incorporating HCT into LHD agency policies and included transition information in several training opportunities with LHD staff and CHTP students even though it could not be formally included it in the AA language.

 

Prophylactic Antibiotics for Children with Sickle Cell Disease

 

The NC Sickle Cell Syndrome Program provided services to 1,903 clients with sickle cell disease, ages 0 to 21, during FY22. This included providing care coordination services along with client, family, and community education and newborn screening follow-up efforts to infants that have an abnormal hemoglobin result when tested at birth. Sickle Cell Educator Counselors work collaboratively with health care providers to support clients in living healthier lives. Parents with children ages three months to five years with sickle cell disease are educated on the importance of prophylactic antibiotics from Sickle Cell Educator Counselors utilizing the educational materials North Carolina Sickle Cell Syndrome Protocol and Outline for Discussing Prophylaxis Penicillin. This information is provided during the initial intake process and annually until the child reaches five years of age or as recommended by the hematologist. Additionally, parents are provided a penicillin toolkit including a Parents Handbook on Sickle Cell Disease- Part I: Birth – 5 years, a thermometer, pill crusher, pill box, syringe and teacher workbook entitled Sickle Cell Disease: The Teacher Can Make a Difference. Specific patient education is given to parents regarding preventative health care measures including keeping regular doctor appointments, staying on task with immunizations, taking penicillin to prevent bacterial infections, recognition of early signs of complications, and when to seek immediate medical attention. Sickle Cell Educator Counselors also provide education to increase knowledge about sickle cell disease to community groups that serve clients and families living with sickle cell disease. Education is provided to daycare centers, Head Start programs, schools, colleges, local health departments, local housing authorities, DSSs, and other agencies including faith-based organizations. Slides for a webinar about penicillin have been drafted and are being reviewed internally, with plans to record and distribute information by June 30, 2023.

 

Based on feedback obtained from a staff/partner survey done in Fall 2021, the Sickle Cell Education Consultant planned and conducted the following trainings in Spring 2022:

• Effective Strategies for Working with Parents of Newborns/Children with Sickle Cell Disease which was done in collaboration with Duke University Comprehensive Sickle Cell Center staff members. 
• Sickle Cell Disease Mental Health Training which focused on common mental health issues experienced by individuals with sickle cell disease.
• Comprehensive Sickle Cell Medical Center Updates and Information on New Sickle Cell Research Therapies which was presented by pediatric and adult hematologists representing all six comprehensive sickle cell medical centers across North Carolina.