As detailed in the Child Health Domain, the WCHS supports a comprehensive, coordinated, family-centered system of care for all children regardless of whether they are CYSHCN or not. Many years ago, the C&Y Branch intentionally restructured personnel so that services and supports for CYSHCN are better integrated into all aspects of C&Y Branch 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 FY20 to improve the health of all children and decrease child deaths and morbidity.

 

CYSHCN Strategic Plan

 

The C&Y Branch continued its strategic planning process (which started in the summer of 2017) to work toward improving systems of care for CYSHCN. Short and long-term recommendations were created to address seven of the eight core domains in the AMCHP Standards for Systems of Care for CYSHCN Version 2.0 released in June 2017: identification, screening, assessment and referral; eligibility and enrollment in health coverage; access to care; medical home; community-based services and supports; transition to adulthood; and quality assurance and improvement.

 

Throughout the strategic planning process, a key recommendation made by family members and partners was the development of a central location where information about CYSHCN would be easily found by families and professionals. The CYSHCN web page was launched as part of the DPH website in late 2019. The web page contents were based on the results of three focus groups of families of CYSHCN. Stories and photographs of the C&Y Branch Family Partners (BFPs) are featured throughout the webpage, and materials related to COVID-19 for CYSHCN and their families were added to this page as well as to the NCDHHS site.

 

Another priority was to ensure that all C&Y Branch staff members fully understood the significance of their work and its impact on CYSHCN. This priority took on even more importance during the COVID-19 pandemic. The PMC, NC Office of Disability and Health (NCODH) Director, Family Liaison Specialist (FLS), and Minority Health Check Outreach Coordinator have each been involved in several efforts to share resources for youth and families of CYSHCN during the pandemic to help understand COVID-19.

 

The connection between the C&Y Branch and the HRSA funded Family to Family (F2F) grantee, the Family Resource Center (FRC) of the South Atlantic, deepened in FY20. Key staff from each organization continued to meet quarterly to share information and discuss opportunities for collaboration. The C&Y Branch FLS served on their advisory board, while their advisory board chair participated on the Branch Family Partners Steering Committee meetings. The Branch PMC, Access to Care Specialist for CYSHCN, and CMARC program manager participated in the NC Family Navigation Model & Guide Steering Committee led by the Carolina Institute for Developmental Disabilities, Family Support Network of NC and the FRC. This initiative is ongoing and will continue into the new fiscal year.

 

School Nurses work with CYSHCN to ensure continuity of medical care that enables success, health, and safety in school. School nurses are part of Student Instructional Support Personnel (SISP) teams involved with planning, provision, and oversight of health care needed for implementation of individual education plans and individual health care plans for children who need them, providing a clinical link that supports educational access. School nurses also work closely with the privately hired nurses who provide one-on-one nursing care for students who need these intensive services in schools, ensuring that the private nurse has an advocate and guidance for working in the educational setting.

 

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 C&Y Branch 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 2018-19 NSCH indicate that 48.4% of CYSHCN had a medical home as compared to 49.4% of children and youth without special health care needs (non-CYSHCN). National rates for this measure are 42.3% for CYSHCN and 49% for non-CYSHCN. State rates for both CYSHCN and non-CSHCN have decreased from the 2016 rates of 52.6% and 54.4%, and while the percent of CYSCHN with a medical home rose between 2017-18 and 2018-19, the non-CYSHCN percentage continued to decrease.

 

In FY20, the importance of the medical home approach and strategies for partnering with and linking all children (especially CYSHCN) to medical homes continued to be shared via the statewide live and archived Child Health Provider webinars. The Child Health Provider webinars, which were described in the CH Annual Report, touched on several issues for CYSHCN including: NCCARE360, CHERRN legal issues, refugee health, vaccine hesitancy, and supporting breastfeeding families.

 

Due to the COVID-19 pandemic response, the PMC and the State Child Health Nurse Consultant (SCHNC) provided weekly thirty-minute live webinars during the months of April, May, and June 2020. The purpose of the weekly webinars was to discuss strategies and recommendations to assist with the delivery of child health services to all children and especially for CYSHCN during the COVID-19 pandemic. The webinars were archived and made available to staff who were not able to participate in the live presentations.

 

The Child Health Training Program (CHTP) is held annually to train and officially roster RNs as CHERRNs. Once rostered as CHERRNs, they are considered billing providers through NC Medicaid and can provide well child visits to children from birth through 20 years of age including CYSHCN in the LHDs. The focus is to help CHERRNs improve access to preventative health care for underserved and high-risk children. CHERRNs learned to help LHDs serve as medical homes to children or partner with medical homes to serve children including CYSHCN. The CHTP curriculum covers issues that come up for CYSHCN during the well visit at the LHD which may require consultation with supervising advanced practice providers or physicians. The CHTP began in January 2020 and was supposed to finish in June 2020. However, due to the local COVID-19 pandemic responsibilities for health department staff who were enrolled as students and precepting, there was an extension of the course by three months until October 2020 to allow for additional time for the clinical practicum experience. Several trainings were provided for LHD staff participating in the CHTP on various topics applicable to the CHERRN role including developmental, psychosocial, and behavioral health screening.

 

Another major effort is the CC4C program, a population management program for children ages 0-5 years. The name of the program was renamed Care Management for At Risk Children (CMARC) in March 2020. The CMARC program goals focus on reducing the negative impact and improving health outcomes for newborns, infants, and young children with a variety of congenital or acquired conditions, developmental or social-emotional delays, exposure to adverse childhood experiences and toxic stress such as being in foster care, and a variety of other special health care needs that may or may not qualify a child for Early Intervention Part C. An underlying strength of this program is its commitment to engage families in both program planning, training, and implementation. Another strength of this program is that it promotes the medical home approach. Care managers are required to develop relationships with medical homes in their communities in order to identify children for CMARC program services. Once a child is identified and engaged in CMARC services, the care manager is required to involve the medical home in the care planning process for that child and family. The CMARC Program Manager is an active participant in the Fostering Health NC Advisory Team, an interagency group working to ensure that all children in foster care are well linked to a medical home. Bimonthly conference calls with WCHS, DSS, and CCNC staff representation are held to discuss systems issues and challenges of working with medical homes to provide care for children in foster care. One big effort for the CMARC program has been to implement and monitor Plans of Safe Care initiated by Child Protective Services (CPS) as part of the response to the Comprehensive Addiction and Recovery Act (CARA) and the Child Abuse Prevention and Treatment Act (CAPTA) for infants affected by substance use, experiencing withdrawal, or with suspected or diagnosed Fetal Alcohol Spectrum Disorder (FASD). Webinars and care pathways were 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. Pathways about how to provide trauma informed care for a variety of children at risk for trauma have been developed with additional training opportunities. These have been archived and are available to all staff. In FY20, approximately 21,703 Medicaid children and 11,568 non-Medicaid children were served in CMARC using Title V funds.

 

Key CYSCHN Partnerships

 

C&Y staff members continued to provide support to the NC Commission on CSHCN and its workgroups (Oral Health and Behavioral Health). The Commission’s nine members were appointed by the Governor and met bimonthly to review and make recommendations related to issues affecting CYSCHN. In FY20 the Commission monitored numerous issues surrounding COVID-19 and its implications for CYSHCN. The Commission shared its positive feedback on the rapid response at the onset of the COVID-19 pandemic by NCDHHS through the provision of physical and behavioral health services via telehealth for CYSHCN. Telehealth services enabled children and their families access to care that would have been otherwise unavailable to them during this crucial and unanticipated time. The Commission also noted, however, that telehealth was not without challenges. While it may seem ideal for rural families who have limited access to local health care services, it also poses challenges as technology and bandwidth are limited. In addition, telehealth is not always ideal for individuals with disabilities who may experience additional challenges in accessing telehealth. It is important that providers follow the Americans with Disabilities Act standards for effective communication when utilizing telehealth. The Commission will continue to monitor the use of telehealth post-COVID. While effective in meeting needs that otherwise may not have been met during this time, it is important that telehealth not become the default standard of care moving forward.

 

The merger of Medicaid and NC Health Choice (CHIP) was another Commission priority. Over the years, the Commission has noted similarities between NC Medicaid and Health Choice such as the reimbursement rates and the benefits packages, which have developed over time. In contrast, one major difference in the two programs is that Medicaid includes the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit which grants access for children to any medically necessary treatment, while Health Choice does not offer this component. EPSDT services are primarily accessed by CSHCN. Having separate programs has been a significant administrative burden for NCDHHS, enrollment brokers, and providers. Additionally, families are often faced with confusion and hardships as they move children from one program to another. Some families even have children in separate programs. Combining the two programs at this time would be a step in the right direction to an effective implementation of the Medicaid Transformation initiative. To best serve the CSHCN in NC, the Commission encouraged and will continue to encourage the General Assembly to consider merging Health Choice with Medicaid.

 

The Commission continued to share its research and concerns about the Innovations Waiver with key partners who joined Commission meetings throughout 2020. Representatives from NC Medicaid, Disability Rights NC, and the NC Council on Developmental Disabilities listened to the Commission’s concerns, which included the extensive wait list and the small percentage of children who are receiving services through the waiver. The Commission will continue to research and share their recommendations with key leaders.

 

For FY20, CMARC continued to expand their training plans to include training for care managers serving special populations including children exposed to substances and safe sleep environments. Additionally, care managers were supported in any technical issues for the Virtual Health documentation platform that includes patient centered care plans. CMARC continued to offer statewide webinars during FY20 which covered the following topics: Keeping Kids Well Initiative that assisted CCNC and AHEC on improving well child visits and immunization rates; safe sleep; how to engage patients and families; motivational interviewing; and engaging with other community resources such as increasing family participation in WIC services. Safe sleep education was provided by the NC Safe Sleep Campaign. Linking families to needed services, including evidenced-based home visiting programs such as MIECHV-funded home visiting models, has also served to support social/emotional health resources through an effective referral process. CMARC provided the following updates to the electronic resource spreadsheet that assists CMARC care managers in linking families to needed resources: parenting education; parenting support; housing; food assistance; and support of the parent-child dyad. Additional consultation and efforts to increase comfort in working with families of substance affected infants and promote referrals were provided via direct technical assistance to LHDs and local social service agencies as part of the plan of safe care efforts. CMARC received direct referrals for providers and assisted families’ needs during the COVID-19 pandemic.

 

Branch Family Partners (BFPs)_

 

Cultivating family and youth engagement between state Title V programs is a continuous journey. The C&Y Branch maintains the commitment of 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 “lived vs. learned” knowledge and skills, along with nurturing their natural desire and drive to give back and make a difference for other families or youth. The C&Y Branch maintains a multi-faceted engagement framework that offers family and youth partners a variety of opportunities to intersect with and contribute to program planning, implementation and evaluation. During FY20, 139 BFPs, (a 51% increase over last FY) contributed 641 documented hours towards C&Y Branch program and activity development, implementation, and evaluation efforts.

The C&Y Branch continued to employ a staff FLS who worked to support staff and families in a broad array of C&Y Branch family engagement efforts. In addition, the C&Y Branch continued to employ a part-time Parent Consultant who served the EHDI Program. The Access to Care Specialist for CYSHCN provided technical assistance to the BFPs in addition to managing the BFP reimbursement system.

 

The C&Y Branch BFP Steering Committee, which represents nine family partners with extensive experience in NC’s System of Care and C&Y activities continued to play a major role in program development within Branch supported activities for both family partners and C&Y staff members.

 

The C&Y Branch’s 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 in English and Spanish at no cost to parents, either as a series or as individual modules according to the parents’ needs. The PACL training was offered in both a direct, face-to-face delivery and a virtual format. The virtual format delivery was piloted with significant reception, especially during COVID-19, as travel was highly restricted. As a result of these combined delivery approaches, twenty training modules were presented to 129 parents and caregivers of CYSHCN across the state during FY20, a 16% increase in attendees over the prior FY. Ninety-seven percent of attendees felt the training contributed to their knowledge and skills for leadership. Participants reported: “that everything starts small and if we are persistent [we] can become something big and reach many families,” “what I learned today made me think about who I am, what are my strengths, my skills and my fears,” among other positive comments. Ninety percent reported they felt better equipped to work on issues related to CYSHCN. Comments included: “I feel more confident to identify a problem and look for a solution quickly before it becomes something bigger,” “becoming a better advocate for my children with special needs and sharing what I have learned with others in my community,” and “ I plan on working on building the bench, cultivating new parent leaders.” Participants further validate how this peer learning environment supports confidence in skills and empowerment based on reported post-training comments including: “Great ideas from other parents about how to advocate in the community” and “learning new perspectives or similar perspectives articulated in ways I hadn't thought of before.”

 

A second training curriculum was added to the C&Y Branch’s Parent Leadership Training cadre addressing how a dental home has equal importance as a medical home. A planning team of BFPs, C&Y Branch staff members, and a contract dental hygienist developed a presentation to discuss practical accommodations and strategies that can be used in the dental care setting, in addition to ways families can partner with their dental providers so CYSHCN have positive dental experiences. The presentation also used the Finding the Right Dental Home for Your Child or Youth With Special Needs checklist to categorize strategies via anxiety, communication, sensory, and mobility concerns (https://publichealth.nc.gov/wch/doc/families/DentalHomeChecklist-102119-WEB.pdf). Eight family partners were trained to co-present with the contract dental hygienist/program consultant. Ninety-two percent of attending family partners reported that their knowledge regarding oral health for CYSCHN and strategies for working with dental providers had increased as a result of the information learned in this training. The evaluation also uses a 10-point scale to assess participants’ confidence levels regarding the topic prior to and after the training. Sixty-seven percent reported more confidence in advocating for accommodations to be made for their child in an oral health setting as compared to 33% prior to training. Fifty-eight percent report more confidence in sharing [dental home] information, resources and ideas for accommodations with other families of CYSHCN as compared to 16% before the training.

 

The C&Y Branch continued to invest in Title V family leadership development by sponsoring family partners to attend national conferences, specifically AMCHP and the National EHDI conferences. 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 attending family partners report back to either the BFP Steering Committee or the C&Y Branch 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. It is further expected that they also participate in additional Branch committees, workgroups or activities to promote and apply information gained through attending the conferences. The Branch supports up to seven attendees [one EHDI, up to six AMCHP]. AMCHP scholarships represent two categories of attendees: AMCHP Ambassadors are family partners who have direct experience in NC’s state system of care, including C&Y Branch sponsored local activities/initiatives, have documented local leadership experiences, and are interested in further developing their leadership potential. AMCHP Scholars are those family partners who have maintained ongoing leadership commitments by serving on the C&Y BFP Steering Committee, the Parent Leadership Training cadre, or other C&Y sponsored committee representation to further their state level leadership opportunities. Additionally, selected AMCHP scholars serve as a resource to help the Ambassadors navigate the conference.

 

Other C&Y Branch sponsored BFP engagement opportunities during FY20 included:

• State planning team for initial 2019 NC Home Visitation/MIECHV conference;
• Panel participants for NC Home Visitation/MIECHV conference where family members candidly shared their personal experiences with select, evidence-based home visitation programs (e.g., Nurse Family Partnership, Healthy Families, Parents as Teachers);
• State planning team for 2019 NC School Nurses Annual Conference;
• Co-facilitators with C&Y staff for breakout session entitled Planning for the Care of the Whole Student at the 2019 NC School Nurses Annual Conference. Five family partners used their children’s experiences to facilitate small group discussions on ways to garner input from other professionals to develop a whole child focused plan to include nutrition, social-emotional, and physical health goals;
• State planning team for 2020 Disaster Preparedness for Children and Youth with Special Needs: Creating Inclusive Strategies Summit. The state planning team was comprised of C&Y staff members, BFPs, and state/local Emergency Medical Services staff who developed a statewide survey to solicit targeted and relevant conference content. The survey was distributed to stakeholders including local emergency planning/first responder personnel, state/local disability advocates and family members. The Summit, scheduled for May, was to invite applicable state and local stakeholders/family partners to focus on identifying and prioritizing Preparedness, Response and Recovery strategies. Due to the state COVID19 quarantine and social distancing requirements, the conference was cancelled; however, conference elements were re-configured for a virtual presentation conducted in July.
• Family partners participated in planning the two-day 2019 Fall C&Y Branch Staff/Family Partner meeting which focused on adolescent health. Additionally, thirteen family partners attended the meeting, including five youth who presented on promoting effective, meaningful engagement opportunities with youth partners.
• Regular family partner presence and voice at the Behavioral Health and Oral Health subcommittees of the NC Commission on CSHCN. Their lived experience with these systems of care offered relevant input through the committees’ role in supporting the Commission work.
• Family partner co-chair for the NC Genetics Steering Committee whose purpose was to develop the leadership structure and guiding organizational framework for the State Genetics Advisory Council
• Family partner participation in monthly C&Y Branch CQI committee.

 

In addition, C&Y Branch EHDI staff provided technical assistance to the F2F’s hearing awareness campaigns targeting families of PreK/K age children, along with hearing loss prevention for older youth (ages 13-21). The state Family Voices affiliate collaborated with the C&Y Branch for targeted educational opportunities (e.g., UNC School of Dentistry) to improve understanding and accommodations value in service provision to CYSHCN.

 

CYSCHN website

 

In late 2019, the C&Y Branch unveiled its statewide CYSHCN website

(https://publichealth.nc.gov/wch/families/cyshcn.htm). The website was a direct strategy that resulted from the Branch CYSHCN Strategic Plan. Statewide surveys of stakeholders and family partners, in addition to family partner focus groups, helped formulate the content. The website is promoted via C&Y Branch outreach materials and presentations. To date, there have been over 1,800 reported views to the website.

 

CYSHCN Help Line

 

The C&Y Branch 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. The Help Line continued to be staffed by a 1.0 FTE with backup provided by the CYSHCN Access to Care Specialist. The CYSHCN Help Line call volume for FY20 was 458 calls and emails – a 57% increase over FY19. Families/caregivers of CYSHCN reflect 71% of the call/email volume. While callers can use the email link (CYSHCN.helpline@dhhs.nc.gov), 89% of callers utilized the direct phone contact which does allow callers to talk directly with staff. Calls/emails originated from 65 of NC’s 100 counties. Ninety-four percent of callers reported English as their primary language. Seventy-three percent of callers reported Medicaid (Health Check) or Health Choice (CHIP) as their child’s primary insurance which was consistent with FY19 reporting. The number of private insurance callers was 21%; however, the number of callers without any insurance increased by 100% over last FY to over 8% of all calls/email. Sixty-five percent of the calls were for children birth to age eleven, while 24% were for ages 12-18. Sixty percent of calls/emails requested assistance in accessing specific community services and resources which included: accessing public school’s Exceptional Children Services, financial assistance, relocation to NC, and Social Security Disability Insurance. Additionally, 19% of call categories reflected health insurance specific inquiries. In July 2019, NC began its initial statewide enrollment in Medicaid managed care so Help Line staff were helping to direct callers to the state call center for technical assistance. Further implementation of Medicaid managed care was paused in late 2019 due to budget implications. Callers to the Help Line indicated they learned about the Help Line via various methods: 42% via the website (a 62% increase over FY19), 11% via the Supplemental Security Income (SSI) letter; 12% via informational flyer; and 10% via State/Local Agency referral.

 

The Help Line continued to employ a CQI approach regarding its service provision to families and professionals. Help Line callers were sent a weblink for a services satisfaction survey. The Help Line services continually receive ratings between 90-100% on service indicators including: timeliness of response from the Help Line Consultant, how well questions/concerns were addressed, and respect shown for caller’s opinions/feelings. Help Line survey respondents’ comments reinforce the Help Line’s purpose and value to families and the professionals caring for CYSHCN via the following quotes:

• “I called 6 different agencies regarding my daughter’s insurance and services. All phone calls [were] insufficient, overwhelming and ultimately frustrating. My 7th call was to the help line. [The Help Line Coordinator] was kind, patient, knowledgeable and provided me with a specific path to ensure my daughter received proper therapy. So thankful for her time during a stressful day!”
• “[The Help Line Coordinator] was incredibly helpful! She was able to provide me with exactly the information I was looking for to assist my client. Keep up the wonderful work.”

 

Outreach efforts to promote the awareness and access of the Help Line utilized several strategies. SSI applicants, ages birth to 18 years, receive direct notification about the Help Line as a resource which in FY20, reflected 4,304 families. Promotional materials are available electronically and in hard copy. The Help Line info card is available in English and Spanish (https://publichealth.nc.gov/wch/doc/families/‌HelpLineInformationalCard-WEB-120219-ENGLISH.pdf). A total of 3,823 Help Line info cards were distributed in FY20. A second brochure outlines the various system referral “pathways” in NC based on a child’s condition and age group (https://publichealth.nc.gov/wch/doc/families/Helpline-ReferralFlowchart-14x6.25-010620-WEB.pdf).

 

A third outreach strategy involves direct promotion via collaborative opportunities (e.g., networking with or attending State or local stakeholder meetings), presentations to potential beneficiaries or professionals who work with these beneficiaries, or exhibits at professional conferences or local community events. In FY20, staff members participated in 88 outreach events. The activity decline over prior years is due to a staff vacancy for six months (Minority Outreach Coordinator) and the COVID pandemic imposed quarantine, travel, and social distancing requirements. Between mid-March through the end of June, another nineteen direct outreach events were cancelled as a result of the COVID pandemic. During this time, the outreach staff members, consisting of the CYSHCN Help Line Coordinator, CYSHCN Access to Care Coordinator, and newly hired Minority Outreach Coordinator, developed revised strategies to promote the value of the Help Line, in addition to promoting NC children’s public health insurance options. Staff members participated in more collaborative opportunities (e.g., stakeholder meetings to share and promote NC Medicaid/Health Choice information) and reached out to various stakeholder organizations or agencies to participate and present in their virtual community meetings. Additionally, outreach staff members also prepared information packets which were mailed to site contacts for inclusion in their distribution efforts (e.g., food distribution to rural or Latino populations and back to school events).

 

Improving Educational Opportunities for CYSHCN

 

Several WCHS staff members, including the Title V Director, continued to participate in the Pathways to Grade-Level Reading initiative of the NC Early Childhood Foundation. The vision of the initiative is that all children in NC are reading at grade level by the end of third grade. The goal includes that children with disabilities achieve expressive and receptive communication skills commensurate with their developmental ages so that they have the greatest opportunity for life success. This also includes promoting developmental screening, assessment, and early intervention. Racial equity continued as a key piece addressed in this process as well as addressing equity related to disabilities. The Title V Director served on the NC Early Childhood Data Advisory Council to create an early childhood data development strategy for the state. The Pathways Data Dashboard (https://www.ncpathwaysdata.org/) was released in June 2020. This is an interactive dashboard that shares disaggregated data on more than 60 whole child, birth to eight measures that matter for third grade reading proficiency. This Pathways work continued to complement and collaborate with efforts for implementation of the NC ECAP.

 

Several Branch programs supported efforts in early childhood education settings which presented opportunities for young children, including those with special health care needs, to experience early learning and development. The State Child Care Nurse Consultant (SCCNC) and the NC Child Care Health and Safety Resource Center (Resource Center) provided training and coaching services to local and regional based child care health consultants (CCHCs). Trainings and technical assistance were also provided by the CCHCs to child care providers to support the inclusion of CSHCNs into the early learning setting and help to ensure a safe environment for the child. This support also included reviewing medical action plans and medications forms and providing technical assistance and training on how to give and safely store medications. The CCHCs served as liaisons between the child and family, the child care provider, the medical home, and other community resources. The CCHCs promoted early identification of the need for referral and early screening for developmental delays using the Learn the Signs, Act Early resources.

 

The SCCHC and the Resource Center provided resources and guidance regarding special needs including allergies, asthma, seizures, diabetes, and G tube management and feeding. In FY20 the SCCNC, in collaboration with the Resource Center, revised the Administration of Medication in Child Care train the trainer course. The course was offered one time to newly trained CCHCs. The SCCNC worked with the PMC to begin the development of a G tube management module as a component of a Caring for Children with Special Health Care Needs in Child Care training.

 

Schools can be a source of strength when there are positive partnerships between parents, youth, and health care providers inside and outside of schools. The C&Y Branch has several school health programs that support the health and social emotional development for all children, including CYSHCN, to be successful academically. State funded SHCs are required to report the number of adolescents aged 10 to 19 seen who have medical and dental homes and assist families in obtaining access if they are not currently receiving services. SHC staff members share information with a student’s medical home or identify one if an enrolled student does not have a medical home. Pediatric and prenatal medical home checklists are shared with families with CYSHCN to improve their ability to identify the characteristics of an optimal medical home for children with genetic conditions.

 

Health care providers and school nurses can collaborate with families to monitor changes in health status, develop plans of care, ensure supports from other school staff, and support the development self-management of care skills if possible, during the school day. School Nurses work with CYSHCN to ensure continuity of medical care that enables success, health and safety in school. School nurses are part of the Individualized Education Program (IEP) teams planning for individual education plans for children who need them, providing a clinical link that supports the child’s experience in school. School nurses also work closely with the privately hired RN’s who provide one-on-one nursing care for students who need these intensive services in schools, ensuring that the private nurse has an advocate and guidance for working in the educational setting.

 

Innovative Approaches (IA) Initiative

 

Child care settings and schools represent the early learning and education system which makes up just one of the systems that impact and influence the health and well-being of CYSHCN. Results from the 2018-19 NSCH indicate that only 18.1% (C.I. 13.5%-23.9%) of families of CYSHCN ages 0 to 17 in NC report that their children receive care in a well-functioning system as compared to 16% (C.I. 13.2%-19.3%) of families with non-CYSHCN. National rates were 14.1% (C.I. 13.1%-15.1%) for CSHNC and 18.8% (C.I. 18.1%-19.6%) for non-CYSHCN. A well-functioning system is defined by the following five age-relevant core measures for CYSHCN age 0-11 years:

1. Families of CYSHCN needs will partner in decision making at all levels and will be satisfied with the services they receive.

2. All CYSHCN will receive coordinated ongoing comprehensive care within a medical home.

3. Families of CYSHCN needs have adequate health insurance and financing to pay for needed services.

4. All children will be screened early and continuously for special health care needs.

5. Services for CYSHCN and their families will be organized in ways that families can use them easily.

One additional core measure used to define well-functioning for CYSHCN age 12-17 is that all CYSHCN will receive the services necessary to make appropriate transitions.

 

The mission of the C&Y Branch is to build, maintain and assure access to systems of care that optimize the health, social and emotional development for all children, which includes CYSHCN. During FY20, the Branch’s IA initiative continued to support the development of community-based and family-focused systems of care for families of CYSHCN. Based on data from the CYSHCN Help Line and other data sources, the C&Y Branch developed the IA Initiative as a community approach to help families of CYSHCN. The purpose of the IA initiative is threefold: 1. to thoroughly examine the community system of care for CYSHCN; 2. to facilitate community identification of sustainable system changes and promising practices; and 3. to coordinate the implementation of these practices with agencies, providers, and families in the community.

 

The goals of the IA Initiative are based on NOM 17.2, as IA focuses on the six components of a well-functioning system to ensure access to needed and continuous systems of care for CYSHCN. IA uses a system change approach rather than a program-based approach to address community improvements for families of CYSHCN. IA requires strong collaborative partnerships between LHDs, parents and families of CYSHCN, local CMARC networks, medical providers, schools, social services, mental health services, advocacy and support agencies, and other community stakeholders. Collectively, these partners work together to identify, address, and improve the system of care for CYSHCN. The C&Y Branch and the IA counties are partners in finding and sharing the innovative solutions to reduce the complexity and improve health outcomes for CYSHCN.

 

The IA Initiative was launched in 2010 in four pilot counties. The initial pilot counties (cohort 1) were funded from 2010-2013. IA has expanded its reach to ten counties in cohort 4 (grant cycle 2019-2022). Collectively, 22 counties (one-fifth of the state) have participated in IA since its inception. Counties in all geographic regions of the state are represented in cohort 4 with the Mountain region having three IA sites (Henderson county), the Piedmont region having six IA sites Gaston, Rowan, Union, Granville, Vance and Warren counties), and the Coastal Plains region having three IA sites (Bladen, Columbus, and Robeson, counties). Counties were selected for participation based on a competitive RFA process open to all LHDs. Remaining funds are being used to partner with UNC-Chapel Hill to develop a comprehensive evaluation of the IA Initiative. As a result, the WCH Section chose as its ESM for this NPM to monitor the following: number of policies, practices, and resources changed to support improved outcomes for CYSHCN by counties implementing IA strategies. The recommendations from this evaluation will guide the future direction of IA.

 

Data for this measure are provided by the state IA Director collected via the IA Strategic Results Framework. Since FY16, IA staff have utilized the Rensselaerville Institute’s (formerly The Center for What Works) Strategic Results Framework that defines and verifies project results, tracks success, and matches to metrics with a collaborative impact project design and strategy for all IA projects. Scorecard data for systems of care for FY20 showed that there were 32 policy, practice, resource and/or cultural changes achieved by the IA projects. Expansion counties included Columbus County and Union County. Columbus County is an expansion county served by the Robeson Health Department and Union County is an expansion county served by the Cabarrus Health Alliance for the 2019-2022 funding cycle. These system changes impacted 1,899 stakeholders including 317 Families of CYSHCN, 60 CYSHCN, 5 Early Childhood Professionals and Specialists, 32 Healthcare Professionals/Providers, 32 IA Members, 17 Institutional Leaders, 1,385 Community Leaders, and 51 School-Based Staff.

 

In close partnership with families of CYSHCN, in FY20 all ten IA counties continued to address community level systems of care issues including building strong medical homes for families. During FY20, a variety of successful community-based and family driven systems changes (practice, policy, procedure, and/or resource changes) were implemented to ensure families of CYSHCN partnered in decision making at all levels and would be satisfied with the services they receive. For example, Cabarrus Health Alliance (CHA) IA (Cabarrus, Gaston, Rowan, and Union Counties) identified several areas of concern on the daily struggles and obstacles that families of CYSHCN experience which impact all aspects of their lives. In addition to the increased need for a strong support system, the physical and emotional health of parents and caregivers are impacted, as well as that of siblings. There is also an increased need for connection to resources. Family support organizations integrated the Powerful Tools for Caregivers curriculum into training for families to address the impact on caregivers of CSHCN or children with disabilities, and they had success with the adoption of policy and resource changes that addressed these concerns. Powerful Tools for Caregivers classes help caregivers take better care of themselves while caring for CSHCN at home or in a care facility. Eight parents/caregivers attended the initial 6 week online course. All of the parents/caregivers completing an evaluation survey reported that the training provided them with helpful information regarding community resources and that they are a more confident caregiver as a result of the class Three community partner organizations (Amazing Grace Advocacy, Family Support Network of the Southern Piedmont, and Cannon Health), have integrated this training into their work with parents/caregivers of CYSHCN. These organizations continue to offer the training on an ongoing basis. They are also currently finalizing adopted written polices or procedures to address impacts on family when caring for a CYSHCN beyond the traditional support services offered by utilizing a “whole family” approach.

 

Additionally, Gaston, Rowan, and Union counties produced the following systems changes:

• In collaboration with Family Support Network of Southern Piedmont and the Arc of Rowan, nine Latino parents of CYSHCN participated in leadership training to build capacity to mentor and support other Latino parents of CYSHCN. These practice and cultural changes resulted in Latino parents having a voice and actively participating in decision making regarding CYSHCN.
• In collaboration with a Doctoral Student at the Department of Special Education and Child Development at UNCC, a resource page was developed on the Resource CAFÉ website for teachers to increase capacity to serve CYSHCN. This resulted in 51 EC teachers and General Education teachers receiving information needed to effectively serve CYSHCN in their classroom.
• Four Healthcare professionals and six families of CYSHCN developed a Health Care & Financing Guide for Families of CYSHCN that will be incorporated by Health Care Providers into their work with families. These practice and resource changes resulted in almost 200 families of CYSHCN having access to information about insurance and financing to access services when needed for their children.

 

The other IA counties also reported many successful initiatives to improve the organization of services in their communities and at the state level in FY20. For example, two Bladen County parents that serve on the Bladen County IA Parent Advisory Council were introduced to the concept of Applied Behavior Analysis Therapy (ABA). Both of the parents have children with autism and realized how this therapy could greatly benefit their children and others with autism. They inquired about ABA providers in their county and learned that they did not exist, so posted an interest survey on their local Bladen County Autism Chapter page to determine the amount of interest. The parents connected with their local mental health entity MCO Eastpointe about offering ABA. The first meeting in February 2018 was a meet and greet for the parents to discuss with MCO Eastpointe about ABA and provide them an overview. The parents wrote an opinion letter to their local newspaper about the lack of services in their county for individuals with disabilities and this letter captured the attention of one of the local county commissioners. He then facilitated a meeting with the parents and MCO Eastpointe and they began the implementation process with the ABA service provider which would entail months of paperwork, etc. The actual services began in 2019 after a year-long process of bringing awareness about this new service opportunity. Due to ABA therapy, one child has begun to speak more frequently and is interacting with others more often. The number of children impacted is expected to increase as more families become aware of the availability of this service.

 

Families of CYSHCN frequently have inadequate insurance or financing to pay for services their child needs. Granville-Vance and Warren IA implemented a resource change through the development of a CMARC, Family, and Professionals Informational Brochure. This tool gives a breakdown of all the services offered to families in a handy format and also identifies providers/professionals. A total of 600 brochures have been shared across the three counties. CMARC case managers in Granville, Vance, and Warren Counties now utilize the brochure with families as well as for resource sharing/recruitment. The plan for sustainability is simple and easily achieved; the CMARC care managers in each county have access to the Word document of the brochure which makes for easy, no barrier access to printing, sharing (in print or electronically), and updating information as services and requirements change over the years. 

 

Henderson IA, the newest county that has received IA funding, is addressing policy and resource changes within the recreational park trails system. In early 2020, they used provider and parent/caretaker surveys and focus groups to collect data which identified issues regarding systemic change as it relates to CYSHCN in their community. They are now collaborating with Kids in Parks/TRACK Trails and partnering with the Henderson County Department of Public Health, the Committee for Activity and Nutrition, Kids in Parks, Henderson Co. School Nurses, Advent Health, Conserving Carolina, and local park rangers to address accessibility of local trails throughout the county to be inclusive of CYSHCN, and to increase awareness of disabilities, inclusion, and the importance of community-wide partnerships. This initiative aligns with the county goal of positively impacting health issues around weight and weight loss by increasing physical activity as outlined in the 2018 Henderson County Community Health Assessment (CHA) and the 2019 Henderson County State of the County Health (SOTCH) report. The 2019 SOTCH also prioritized TRACK Trails as part of the physical activity focus area innervations. Specifically, the need for more inclusive playgrounds and other outdoor recreational activities geared toward CYSHCN was also identified as an area of significance. They have completed accessibility reviews of three TRACK Trails (Fletcher Park, Mills River Park, and the Carl Sandburg Home), with another trail to be opened at the Park at Flat Rock. IA and TRACK Trails have begun a partnership with the intention of:

1. increasing families with CYSHCNs awareness of TRACK Trails and increase their use of these trails;
2. involving these families and children so that they can contribute to improving the trail system for their use;
3. increasing the number of health care providers in Henderson County who regularly discuss participation in physical activity with families and CYSHCN by using the TRACK Rx program to “prescribe” nature and outdoor activity;
4. creating an adapted version of the NCODH accessibility review to create a document specific to outdoor recreational space; and submit the document to NCODH and NC ADA Network for review; and
5. creating a TRACK Trail brochure specific to the needs of CYSHNC.

 

Impact of COVID on IA

 

By all accounts, the unexpected impact of COVID has been especially difficult for parents and families of CYSHCN and also impacted the implementation of IA in all ten counties. Overall IA has had to adapt to transitioning from in-person steering and/or subcommittee committee and parent advisory council meetings to videoconference meetings. Funding planned for in-person trainings (Power Tools for Caregivers) changed to virtual trainings which involved additional training costs for trainers to learn how to teach using various teleconference platforms and learn how to organize their presentation materials. Parents as Collaborative Leaders training offered to parents and families of CYSCHCN was also reorganized to a virtual format.

 

IA staff quickly adapted to utilizing communication platforms such as the Resource Café (through CHA IA), Survey Monkey, Constant Contact, and others in addition to the LHD websites and Face Book accounts for communicating with IA families, committee members, and community partners (i.e., newsletter, meeting reminders and updates, activities and events).

 

In addition, CHA IA created a Photo Voice virtual exhibit to visually display these effects within Cabarrus, Gaston, Union, and Rowan counties. Parents and families of CYSHCN were asked two life-altering questions: 1) How does life change for a family when they have a child with complex or special health care needs? And 2) What challenges do they encounter on their journey, particularly when also dealing with a pandemic? Because “a picture is worth a thousand words” the Photo Voice Project can be a powerful way to help others understand and connect with the issues encountered by families of children with complex or special health care needs The CHA 2020 IA Photo Voice Virtual Exhibit is located on the C&Y Branch website (https://publichealth.nc.gov/‌wch/families/cyshcn.htm).

 

The Robeson, Bladen, and Columbus IA Coordinator and Parent Outreach Coordinator developed a Disaster Preparedness video showing a detailed presentation for families of CYSHCN around preparedness strategies in the event of a natural disaster. Families of CYSHCN have to be extra prepared when encountering natural disasters, and the video teaches viewers different techniques in how to prepare and stay prepared, including the importance of packing masks and hand sanitizer during a pandemic. This video is also located on the C&Y Branch website.

 

In Henderson County, COVID greatly impacted their ability to complete TRACK Trails Accessibility Reviews due to social distancing constraints. It also impacted the rollout of TRACK Rx, particularly in their schools where they have partnered with the school nurses to write the “prescriptions.” Their school system recently returned to partial in-person learning recently, and they hope to see those numbers start to improve.

 

Health Care Transition for YSHCN and All Adolescents

 

Health care transition (HCT) for all adolescents, and especially YSHCN in partnership with a medical home, continued to be a focus for the C&Y Branch and its partners during FY20. 2018-19 NSCH data show that in NC, 16.5% (C.I. 10.3%-25.3%) of YSHCN, ages 12 through 17, received services necessary to make transitions to all aspects of adult life. This is worse than the national average of 22.9% (C.I. 20.8%-25.1%) and a decrease from the 2016-17 percentage of 22.4% (although the confidence intervals for both survey years overlap and are wide, so this is probably not a significant decrease). The C&Y Branch continued to work with partners to improve this rate and made transition information and resources available through many Branch programs. HCT is a domain in the AMCHP Standards for Systems of Care for CYSHCN that the Branch embedded and continued to work on as part of the Branch CYSHCN Strategic Plan.

 

The Title V CYSHCN Director continued to guide an internal C&Y Branch Health Care Transition Work Group to further define HCT in Branch activities and efforts. The IA Director assumed the role of the work group coordinator and will continue to coordinate these meetings moving forward. Work group members will be focused on education and promotion of HCT among families and providers.

 

The PMC continued to maintain a listserv of pediatric, family physician, internal medicine-pediatric, and other provider champions with an interest in HCT. These providers are from academic centers, hospitals, CCNC, and communities across the state. This HCT listserv allowed for periodic conversations about current efforts, requests for expertise, and an opportunity to learn about and share HCT efforts within NC.

 

The PMC continued to co-chair the Fostering Health NC Transition Age Youth Work Group with Fostering Health NC staff. The NCODH director and Adolescent Health Coordinator also have participated. This work group, which consists of state and county DSS, young adults who were in foster care as part of community agencies, and several community agencies with youth advisory groups, continued to focus on reducing barriers and increasing the abilities of youth in foster care to have continuous Medicaid coverage and participate in NC’s Foster Care 18 to 21 Program while also helping youth understand how and when to develop skills and knowledge around self-management and use of care. This Transition Work Group worked with state DSS level staff to perform activities related to shared decision making and informed consent (key parts of HCT) that are included in the federally required Health Oversight Care Plan for NC by NC DSS.

 

NC Office on Disability and Health (NCODH)

 

The NCODH, housed in the C&Y Branch, continued to integrate the health concerns of persons with disabilities, including CYSHCN, into state and local public health programs. This integration helped to create sustainable infrastructure, build capacity, maximize resources, and promote inclusive policy initiatives.

 

NCODH continued to collaborate with LHDs to increase accessibility and inclusion for CYSHCN by providing information, technical assistance and resources and by conducting on-site accessibility reviews. NCODH completed six accessibility reviews at LDHs in FY20 before travel for on-site accessibility reviews was halted due to COVID-19. Accessibility Review materials and resources were revised to better assist LHDs in increasing access and inclusion of CYSHCN. To further expand ability to provide accessibility reviews for LHDs, NCODH provided a one-day training in October 2019 for staff at the four IA Initiative sites to prepare them to conduct accessibility reviews in their community. Each of the sites conducted accessibility reviews at their LHD in fall 2019 and are now better prepared to conduct further accessibility reviews in the community as requested.

 

To address access to care and address the health and wellness needs CYSHCN in a community, NCODH partnered with Special Olympics North Carolina (SONC) to develop a pilot project designed to increase inclusion of individuals with I/DD and CYSHCN in Community Health Assessments. Working with three IA sites, NCODH and SONC is using the Mobilizing for Action through Planning and Partnerships (MAPP) Inclusion Guide promoted by NACCHO to develop guidelines for local communities to increase inclusion of CYSHCN in the assessment process. As LHD focus shifted to COVID-19 in spring 20, this project was put on hold until FY21.

 

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 also worked to raise awareness of the sexual health education needs of CYSHCN in the Partners for Adolescent Sexual Health workgroup

 

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 multiple presentations for dental providers as part of the Dental Home for CYSHCN Initiative, specifically addressing accessibility needs and ADA compliance within dental practices.

 

The C&Y Branch involvement in emergency preparedness efforts expanded in FY20 as the NCODH strengthened the partnership with NC Emergency Management (NCEM) and participated in efforts to improve preparedness efforts for children and adults with disabilities through involvement in statewide workgroups including C-MIST Advisory Committee, Shelter Accessibility Workgroup, and Functional Assessment Support Team (FAST) Workgroup. NCODH increased involvement in NCEM by serving as a FAST Coordinator during Hurricane Dorian and training additional FAST members.

 

In partnership with NCEM, NCODH planned an Emergency Preparedness Summit for CYSHCN that was scheduled for May 2020,but was canceled due to COVID-19 restrictions. Recognizing the need to address the unique situation of preparing for hurricane season during COVID-19, NCODH and NCEM developed a webinar series in place of the Summit. This series titled Hurricane Season and COVID-19: How Families of CYSHCN Can Be Prepared provided information on personal preparedness, how state and local officials are preparing during COVID-19, and information on recovery and resources. Each webinar included a panel of emergency management professionals, community-based partners, and BFPs or family members of CYSHCN.

 

NCODH collaborated with the Social Determinants of Health CoIIN and the Office of Minority Health and Health Disparities to address inclusion of people with disabilities and CYSHCN in efforts to address health equity. With the shift to COVID-19 response efforts, NCODH collaborated with NCDHHS Historically Marginalized Population Workstreams to ensure the needs of people with disabilities and CYSHCN who are also part of racial and ethnic minorities were addressed during the COVID-19 response.

 

Genetics Program

 

The C&Y Branch includes genetics as a priority among its programs that serve CYSHCN. During FY20, the Branch continued to partner with other state public health agencies, public and private academia, industry, families, medicine, and community genetic and genomic stakeholders to finalize and publish online the 2020 NC Public Health Genetics and Genomics Plan which can be found at: https://publichealth.nc.gov/wch/doc/families/NC-PublicHealthGeneticsand GenomicsPlan-FINAL-Approved.pdf. The plan’s objectives and actions focus on three priority areas for recommendations: Genetic Services and Testing; Education and Communication; and Epidemiology and Surveillance. The Branch, in partnership with the working group that developed the 2020 Plan, defined the membership (up to 18 people) and roles for a Genetics and Genomics Advisory Committee (GGAC) which was created to help monitor progress on the objectives and actions of the plan. The State Public Health Genetic Counselor (SPHGC), Branch PMC, Genetics and Newborn Screening Unit Manager, and the Branch FLS created an application to recruit families, health care providers, researchers, and industry representatives. Over 30 individuals applied in the spring of 2020. A selection team comprised of the PMC, SPHGC, Genetics and Newborn Screening Unit Manager, and two past co-chairs of the 2020 Plan committee (a geneticist and a family member) selected and invited 18 members to serve on the GGAC.

 

In addition to serving as a key member and staff for the NC Public Health Genetic and Genomics Plan leadership team, the SPHGC continued to be a resource to health care providers, LHDs, and other professionals across the state during FY20 and provided back-up Newborn Screening assistance. In addition, direct patient care was provided when timely genetic counseling services would not have been obtainable otherwise. Parents of CYSHCN seen in genetic clinics at medical centers across the state and by the SPHGC and did not have a medical home continued to be encouraged to establish one and helped if needed. The SPHGC also provided technical assistance 427 times to providers regarding genetic services related to patient care in FY20. The SPHGC developed and delivered pertinent trainings to providers including the evaluation of children with developmental delays. This included an archived statewide genetic webinar training which was held in October 2018 and was available until October 2020 with nursing credits. This archived webinar provided guidance on how to take a family history/pedigree for nurses, physician and other interested health professionals. The SPHGC also provided Infant Toddler in-service trainings to the CDSAs primarily focused on general genetics and referrals. 

 

The North Carolina Sickle Cell Syndrome Program provided services to 2,033 clients with sickle cell disease, age 0-21, during FY20. This included providing care coordination services along with client, family, and community education. Sickle Cell Educator/Counselors work collaboratively with health care providers to support clients in living healthier lives. Patient education is provided one-on-one to clients and families regarding preventative health care measures including education about keeping regular doctor appointments, staying on task with immunizations, taking penicillin to prevent bacterial infections, the 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, LHDs, local housing authorities, DSSs, and other agencies including faith-based organizations.  

 

Hearing Program

 

The Carolina Children’s Communicative Disorders Program (CCCDP) Financial Assistance Program provides hearing aids and cochlear implant supplies and equipment. They also provide the unique clinical care required to use, maintain, and enable progress with this specialized technology. Qualifying children are accepted into the program based on such criteria as family size, income, other medical expenses, and the limitations of insurance and other resources such as Medicaid. Previously supported by Title V funding, the state now utilizes state funding for this service and pays for children with no other payment options. A total of 200 children were served by CCCDP Financial Assistance Program in FY20. The Children’s Cochlear Implant Center at UNC continues to experience tremendous growth, making it one of the largest centers in the country.

 

The UNC Craniofacial Center facilitates early intervention and improved care coordination for North Carolinians with craniofacial anomalies with efficient use of limited resources. Services are provided statewide that require extensive, long-term treatment to those who meet the funding criteria as payment of last resort. Approximately 530 patients were served in FY20.

 

A Cooperative Agreement for continued enhancement and interoperability of WCSWeb was continued in FY20, along with a HRSA funded grant that focused on increasing the percentage of infants diagnosed by three months of age and the percentage of infants with hearing loss enrolled in early intervention services by six months of age. The EHDI Advisory Committee met quarterly to discuss issues such as the quality of audiological and intervention service delivery and contribute to strategic planning. The NCPS EHDI Chapter Champion continued to work with program staff and the EHDI Advisory Committee to promote newborn hearing screening among pediatric peers and enhance the quality of audiological and intervention services for children and youth with hearing impairment.

 

Family and provider engagement continued to increase as the EHDI Program expanded family support services and created leadership, collaboration, and advocacy opportunities for families. Several activities contributed to this increase, such as the work efforts of the part-time Parent Consultant, supporting local family support groups (HITCHUP), expanding parent involvement on EHDI Advisory Board, disseminating upgraded materials to reflect cultural diversity, and updating the Better Hearing and Speech Month (May) Campaign. The Parent Consultant collaborated with the C&Y Branch FLS to identify parents for participation in Branch activities (e.g., review public materials for distribution, development of new program materials, and participate on committees, etc.). Parents affiliated with the program are identified to attend the national EHDI conference to further expand the knowledge and skills to become a parent leader within the hearing loss/impairment community and to participate with the Branch on future program or services.

 

In FY20 the PNC reached out to the six nutritionists/RDN’s employed by regional CDSAs to assess interest in networking and to discuss topics of common interest pertaining to the nutrition care and medical nutrition therapy of infants and toddlers with special health care needs. Based on an overwhelming interest, the PNC set up quarterly networking/virtual meetings which occurred in Feb, May, June, August and November 2020. Topics included best practices and favorite nutrition resources; micro-preemies and how CDSA nutritionists are providing nutrition care for this population; working with special formulas and working with WIC; nutrition telehealth and phone consults being utilized to reach families during COVID-19; and the role and value of CDSA nutritionists.

 

Infant-Toddler Program

 

In FY19, the NC state demographer estimated there were 362,856 infants and toddlers (zero to three years of age) living in NC. A total of 19,800 infants and toddlers, or 5.5% of NC’s population younger than three years old, were enrolled in the Infant-Toddler Program (ITP) in FY19, which remained about the same as last year’s rate. The ITP provides supports and services for families and their children, birth to three who have special needs. Children are eligible for enrollment if they have a 30% delay or score 2.0 standard deviations below the mean on a standardized test in at least one area of development (e.g., cognitive, physical, communication, social/emotional, or adaptive), or demonstrate a 25% delay or score 1.5 deviations below the mean on a standardized test in at least two or more areas of development. Children also qualify for enrollment based on state-specified established conditions that lead to or are likely to result in developmental delays or disabilities.

 

The ITP is comprised of the EIB and regional CDSAs located across the state. The EIB has the responsibility of implementing mandated Part C of the Individuals with Disabilities Education Act (IDEA) General Supervision components related to program compliance and monitoring, reporting of key federal performance indicators, fiscal management, dispute resolution, and targeted Technical Assistance and professional development. In addition, the EIB facilitates the Interagency Coordinating Council (ICC) which brings policy makers, service providers, and parents together to ensure that the supports and services offered to families are in line with their needs. The CDSAs conduct child find efforts in partnership with their Local Interagency Coordinating Councils (LICCs), evaluations and/or assessments, provide service coordination, and ensure enrolled children and families have Individualized Family Service Plans (IFSPs). IFSPs are developed via a team of family and professionals and are based on family identified needs to ensure that families receive appropriate services. Services are primarily provided through a network of contract providers who provide coaching to families and specialized therapies in children’s natural learning environments (most often their homes) which are integrated into children and family’s daily routines.

 

Recruitment and retention of staff members has been an ongoing challenge due to noncompetitive salaries, needed workforce in rural counties, among other factors, which collectively leads to high caseloads and an impact on timely services and eligibility determinations. Many CDSAs have been forced to rely on external providers for services. As with many other states across the country, it is difficult to recruit specialized therapists and mental health clinicians (such as occupational therapists, physical therapists, speech/language pathologists, and psychologists) that are in high demand and where there are national shortages, particularly when there is a significant pay differential between the CDSAs, private practices and clinic/hospital settings.

 

SPM#3 - Percent of infants and toddlers with IFSPs who receive the early intervention services on their IFSPs in a timely manner

 

In an effort to help monitor how well the WCHS is meeting the selected priority need, which is to provide timely and comprehensive early intervention services for children with special developmental needs and their families, the WCHS selected the following indicator as its SPM#3: Percent of infants and toddlers with IFSPs who receive the early intervention services on their IFSPs in a timely manner. The EIB is required to report on this indicator in the Part C State Performance Plan (SPP)/Annual Performance Report (APR). The SPP/APR is a requirement of the U.S. Department of Education, Office of Special Education Programs (OSEP), which mandates each state to develop a six-year plan, the SPP, with stakeholder input that establishes targets set by OSEP or the state, depending on the type of indicator. There are two types of indicators: compliance and outcomes or results. The latter indicators focus on child and family outcomes as well as child find, which measures the percentage of children identified, evaluated and enrolled in the birth to one range and in the birth to three age range in comparison to national population data. OSEP sets the three compliance indicators at 100% and the remaining eight indicators are set by the state with stakeholder input. States report annually on their progress through submission of the APR.

 

Compliance with SPM#3 indicator is determined via a self-assessment record review of all children in the ITP who had services added to their IFSPs over a three-month period (September through December). The target for this indicator is 100%, and the ITP had a compliance rate of 99.04% in FFY19, with fewer than 50 children across the state who did not receive all of their IFSP services in a timely manner due to CDSA-specific delays. This indicator has stayed consistently high since the first inclusion of this SPM in the NC MCHBG, as the compliance rate for FFY15 was 99.12%. It dipped to 97.93% for FFY16, but was back above 99% for the remaining years.

 

SSP/APR Indicator 11 is called the State Systemic Improvement Plan (SSIP) and follows a slightly different reporting period, which for this past FFY was April 2019 to April 2020. The SSIP consists of a multi-year plan focused on a results area that states, with input from their stakeholders, identified in 2014. The SSIP was initiated by the Office of Special Education Programs to shift from focusing on compliance to a more systemic results-focus area that impacts outcomes for children and families served by special education programs across the states. As exemplified by the data above, NC, like most states, has high levels of compliance, however many states found that children’s outcomes had not changed at the same pace as compliance. The SSIP was developed to change this pattern and begin statewide planning that would make a difference in children’s outcomes. Planning for the SSIP revealed a need to change practices and ensure fidelity and sustainability. In the formulation of the SSIP, states were instructed to obtain diverse stakeholders’ input to identify an area of focus that would result in improved child and/or family outcomes. North Carolina’s State-identified Measurable Result (SiMR) for its SSIP is to improve the social-emotional outcomes of infants and toddlers ages birth to three with developmental delays and/or disabilities who are enrolled in the NC ITP (federal indicator 3a). The SSIP aims to increase the capacity of the early intervention system to improve social-emotional outcomes using principles of implementation science to successfully implement, scale-up, and sustain selected evidence-based practices. Key elements of implementation support will be through state and local teaming structures, professional development opportunities, fidelity tools, and continuous evaluation activities that will inform progress and/or a need to change or correct the current course of action. Work on the SSIP continues to include active participation of internal and external stakeholders.

 

NC initially had five SSIP implementation teams, or content area teams - infrastructure, professional development, family engagement, evidence-based practices, and global outcomes integration. Collectively the teams recommended 18 strategies to be considered for implementation. A revised SSIP teaming structure was implemented in May 2017, which has dramatically helped to support implementation of evidence-based practices with supports to ensure fidelity and sustainability. In June 2018, the number of strategies under the SSIP were reduced from 18 to three. This step to remove strategies from under the evaluation and reporting requirements of the SSIP was done intentionally to narrow the number of new practices that staff and providers were expected to implement and that the state was required to monitor and evaluate.

 

The three strategies that remain the focus of the SSIP include coaching interaction styles within the context of natural learning environment practices, roll out of an enhanced process for integrating global outcomes into the development of functional IFSP goals for children and families, and implementation of the pyramid model, which will provide a foundation for high quality early intervention services and supports that specifically address social-emotional development.

 

Each of the 16 CDSAs have attended at least one two-day training on coaching interaction styles of communication and natural learning environment practices, as well as a single day training on resource-based practices. These strategies were identified as a bridge to increase family engagement and family capacity to impact their child’s social-emotional development. Additional planning efforts are underway to ensure trainings are available for contract providers.

 

The remaining 15 strategies removed from the SSIP did not go away; instead, they were shifted to the EIB to work on more methodically as the CDSAs’ staff and providers strengthened their skills in the use of coaching interaction styles and natural learning environment practices within the context of everyday routines. The initial SSIP reporting period has ended, and the EIB is starting its next 5-year reporting term. The remaining strategies continue to be priorities for the EIB and are being addressed at varying stages of implementation depending on resources and staff capacity.

 

The NC ITP administers a yearly survey to the parents of children ages 0 to 3 years old who are receiving ITP services for six months or longer. The family survey is implemented as a means to fulfill federal Indicator 4, a results indicator, which measures the percent of families participating in Part C who report that early intervention services have helped the family:

A. Know their rights;

B. Effectively communicate their children's needs; and

C. Help their children develop and learn.

 

Historically, the NC ITP had low response rates using the National Center for Special Education Accountability Monitoring Family Survey for Early Intervention; response rates averaged around 13% and were not representative of families. In FY17, the NC ITP overhauled the Family Outcomes Measurement Process and began implementation of Section B of the revised Family Outcomes Survey (FOS-R) to intentionally address response rates. The revised survey has fewer, more family-friendly questions and is offered to families with multiple options for submitting their responses. Families are reminded in advance of their semi-annual IFSP team meeting by their early intervention service coordinator that they will be asked to complete a survey. At the semi-annual IFSP review, families are offered the opportunity to complete a paper form, obtain assistance from the ECAC to complete the survey through their 1-800 number, or complete the survey electronically on a phone, tablet, or computer.

 

As a result of the shorter survey and multiple methods of administration, survey response rates have improved and, more significantly, are more representative of the population served by the NC ITP. Overall, the NC ITP’s response rate increased from 13.1% in FFY15 to 31% for FFY17, the first full year using the new survey process for all CDSAs. While the response rate remained high, at 28.5% in FFY18, the rate for FFY19 dropped substantially to 20.2% While some of the overall decrease can be attributed to the impact of COVID-19 during the final months of the year, quarterly data tracked by the N.C. ITP tells an expanded story. Response rates for all race/ethnicity groups were highly variable over the fiscal year, with a program-wide decrease in October-December 2019 that the N.C. ITP was already working to address when COVID-19 began to impact the state.

 

In addition to addressing overall response rates, the state office has worked in collaboration with individual CDSAs on more targeted efforts to increase response rates for specific groups, in particular response rates for families of Black and Hispanic children where these groups may need particular focused work. Historically, response rates for families who identified as Black or African American or Hispanic or whose primary language was Spanish were even lower than the overall rate, often in the single digits. Changes in the survey process have resulted in response rates for these groups much closer to response rate for the ITP overall. Receiving representative data is critical for the program to better understand how to reach and serve all populations across the state and we continue to focus on this area to ensure the data represents the children and families we serve.

 

In addition to implementing FOS-R, the NC ITP contracted with the ECAC to facilitate focus groups with CDSAs. The purpose of these activities was to provide qualitative data that could be combined with quantitative data such as the family survey to assist in:

• identifying needs and promoting best practices that can lead to an increase in family engagement
• assessing the effectiveness of parent engagement efforts
• providing self-assessment data, and
• identifying strategies to increase feedback.

 

In FY18, focus groups were conducted with five CDSAs. The main themes that evolved from the sessions and phone interviews were as follows:

• Parents reported that the distraction of everyday demands were the primary barriers to completing the family outcomes survey
• Parents felt “overwhelmed” because of day-to-day demands and navigating all that needs to happen in any given day
• Most parents felt that taking on a Parent Leadership role would be too time consuming
• Families indicated that their coordinators were accessible and responsive to their concerns and the needs of their family, and they overall felt that their service coordinators were helpful
• Families reported that they would like opportunities to get together to learn from and share with each other
• All participants expressed some level of anxiety about exiting the program and transitioning from IFSP to IEP.

 

In an effort to enhance family engagement and leadership, the NC ITP contracted with the ECAC to provide parent leadership training with enrolled families. During FY20, these trainings were done virtually.