KY’s Office for Children with Special Health Care Needs (OCSHCN) has leveraged technical assistance and partnerships to strengthen and better integrate the overall system of care for KY’s CYSHCN population. OCSHCN staff continues to receive guidance from the University of Missouri Show-Me ECHO project for OCSHCN’s ECHO Autism program as well as from Boston University’s CoIIN project to Advance the Care of Children with CMC Needs.

 

 

OCSHCN submits the following updates organized around the six MCHB core outcomes for children and youth with special health care needs:

 

MCHB Core Outcome #1: Families are partners in shared decision-making for child's optimal health

 

The 2019-2020 National Survey of Children's Health (NSCH) showed that 44.1% of KY’s CYSHCN families answered ‘always or usually’ for Core Outcome #1 with ‘sometimes or never given’ 7.3% of the time by Kentuckians vs 9.3% nationally.   OCSHCN survey’s a random sample of 20% of its in-clinic patient and family population each year consisting of 35 questions, and all except two of the questions correspond to questions on the MCH 3.0 NSCH survey. For 2021, 90% of families responded that the doctor always helped them feel like a partner in their child's care.

 

 

OCSHCN Parent Advisory Council (PAC) and a Youth Advisory Council (YAC) are avenues for family participation, and in FY21 work has continued towards strengthening both. The goal is for families to be involved in the policies that affect them. We understood that we needed to add more members to the YAC and PAC and increase the committee's diversity. In FY21, we added a YAC member with autism and another with a genetic disorder. To the PAC we added a parent of a hearing-impaired child. The diversity in these cases had to do with diversity of diagnosis and experience. In FY21, OCSHCN continued to discuss with the YAC better communication during COVID-19 and talked to the PAC about their experience using telehealth, with most parents having had some experience with telehealth.

 

With OCSHCN Family to Family (F2F) support services, support parents continued to counsel families about available services and resources with obtaining prescriptions continuing to be an issue for OCSHCN families. Families who talk with a support parent often realize they have had some of the same experiences. Once the families get more comfortable talking to the support parent, they often reveal other needs they have. To the extent possible, F2F matches families with a support parent within the state. In cases involving particularly rare conditions, an in-state support parent may not be available. In those instances, OCSHCN/F2F staff contact the national parent to parent programs to find a suitable match. Those organizations include entities such as the AAP Home Care Board (our F2F leader currently serves on the board), Family Voices, and KY Council for Persons with Developmental Disabilities, along with the University of KY Human Development Institute. Title V investment in KY includes coordination of the F2F Health Information Centers program, a critical initiative addressing the needs of the CYSHCN population. OCSHCN social workers and F2F staff serve as certified application counselors for the state’s health benefits exchange. The application counselors are part of a network of individuals trained to provide information and assistance with enrollment issues.

 

F2F continues to work with the PAC, YAC, Children with Medical Complexity Collaborative Improvement and Innovation Network (CoIIN), and the EHDI Advisory Board.

 

Family to Family – Count of Families and Professionals Served

 

Outreach Type	Families	Professionals
One-to-One Assistance	727	162
Partnering in Decision Making	2,525	5,860
Accessing a Medical Home	576	1,277
Transitions	821	851

 

In FY21, F2F has worked with 3,514 families and worked with professionals over 4,547 times on navigating systems and accessing community services. F2F has 30 categories it focuses on such as home care, respite care, social determinants of health.

 

F2F conducted outreach involving CoIIN, resource fairs, back to school events, Community Collaboration for Children, and other events with community partners. F2F attended IEP’s and 504 meetings with families. F2F conducts a support group in collaboration with schools called the Care Giver Support Group. F2F has worked with over 200 grandparents through the caregiver’s support group, providing them the support they need to raise their grandchildren as an aging person. F2F staff work with the UP in KY(UPKY) which consists of approximately 15 different organizations, mostly family run.

 

Another area in which input was provided from families was with our Virtual Care Team conferences. Due to the difficultly of reaching providers, the VCTC continued to be held with only 1 or 2 people instead of the more typical of 4-5. OCSHCN learned patients were having an issue acquiring medication in FY20 and addressed the problem by mailing medications.

 

OCSHCN has a toll-free number, and a comment line that is available for families. Relevant calls are forwarded to F2F staff. OCSHCN/F2F staff also directly survey families to assess family satisfaction with F2F services. Before the COVID-19 pandemic, F2F offered a lending library with a wide array of materials for families. Since the pandemic, F2F staff assist families in finding resources online. OCSHCN/F2F staff work in partnership with families to support their decision-making regarding health care and individualized treatments. The nursing care coordination and multi-professional team approach continues onsite, and the F2F director is consulted by the MDA Clinic at the University of Louisville (UofL) and at an autism clinic located in rural southeast KY.

 

Care coordinators also attended expanded Cerebral Palsy and Autism clinics, and care coordinators and dieticians have assisted at the offsite Spina Bifida partnership clinic. To assist with overcoming any barriers and assuring successful transition to adulthood, OCSHCN’s transitions administrator follows up personally with patients who are soon to age out of the program.

 

MCHB Core Outcome #2: CYSHCN who receive coordinated, ongoing, comprehensive care within a medical home

 

According the 2019-2020 NSCH, the percent of CYSHCN age birth-17 who have a medical home in KY was 42.0% while nationally it was 42.2%. OCSHCN supports the concept of a medical home that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective. While there are few true certified medical homes available in KY, OCSHCN provides many resources and supports to existing providers in the community. This includes not only employing a team approach, care coordination, and parent support, but also advancing the concept with patients and providers alike whenever possible and partnering to assure that medical home efforts link with other efforts.

 

Care coordination services are offered to families who have children with an OCSHCN eligible diagnosis. Enrollment in OCSHCN’s clinical program is not required to receive care coordination. Through care coordination, an OCSHCN registered nurse works with a family to create the care plan that is right for the child and family. The plan includes the recommendations of physicians and other professionals and respects the needs of the child and family. This service meets the family’s comprehensive health needs through communication and available resources to promote high-quality, cost-effective services for the child or youth. Medical home training is a component of new support parent training. F2F assisted 576 families toward the medical home outcome and 1,277 professionals in FY21. When COVID started, OCSHCN had just started to incorporate diagnosis of autism via telehealth due to one of OCSHCN’s providers being recently certified to do so. In FY21, the provider was able to continue working with a fellow provider and allowed OCSHCN to perform more diagnosis via telehealth.

 

MCHB Core Outcome #3: CYSHCN have consistent and adequate public or private insurance

 

Adequate insurance coverage is a priority issue for Kentucky (SPM #5). CYSHCN represent a special risk and OCSHCN staff verify public and private insurance coverage and refer uninsured applicants to the KY Health Benefits Exchange (KHBE) kynect portal when their income suggest they may qualify for Medicaid/MCO coverage. OCSHCN staff assist legal guardians through the Medicaid application process offering advice on types of earned and unearned income that may determine Medicaid eligibly. OCSHCN’s Intake Department’s social worker is trained as a ‘kynector’ and assists families during open enrollment to navigate the kynect portal.  In addition, social workers in OCSHCN regional locations and parent consultants serve as kynectors for families throughout the Commonwealth.

 

MCHB Core Outcome #4: CYSHCN who are screened early and continuously for special health care needs

 

OCSHCN specialty clinics serve CYSHCN, at different developmental stages, from birth to 21 years of age. OCSHCN’s Early Hearing Detection and Intervention (EHDI) surveillance program reaches the entire population of KY newborns to ensure early hearing screenings and follow-up. OCSHCN has a developmental screening program that is available to any child in KY from birth to 3 years of age. OCSHCN and F2F staff assist CYSHCN and their families through KY’s early intervention system, as well as referrals to other assistance programs, such as a home visitation program through KY Health Access Nurturing Development Services. KY’s hospitals have a rate of 98.3% of infants screened for hearing loss prior to hospital discharge. The EHDI program assists birthing hospitals in scheduling infants who do not pass the screening for follow-up prior to discharge. This approach has improved parent compliance and results in more timely diagnosis of hearing loss.

 

In FY21, OCSHCN was successful in increasing our reach to midwives working with committees that typically won’t work with government agencies and those delivering at home due to COVID. OCSHCN worked with midwives and those midwives agreed that if we provided the equipment for hearing tests, they would be willing to give tests, and we have budgeted for providing that equipment in the future. Infants are scheduled for diagnostic evaluations in OCSHCN offices when a need is indicated by their screening results or known risk factors to reduce loss-to-follow up. The University of KY (UK) has partnered with OCSHCN’s EHDI and has been awarded a National Institute of Health (NIH) grant to research the use of patient navigators for families in which newborns did not pass their hospital hearing screen. Navigators assist families in the process of obtaining proper follow-up testing and enrolling in intervention services as needed.

 

In FY20, the KYChild Hearing Immunization and Laboratory Data (KYCHILD), was integrated into the existing KY Online Gateway (KOG), and audiology staff assisted with technical issues related to the transition. EHDI staff are in the second year of grant funding from both HRSA and the CDC, both are for 4-year cycles. In FY21, COVID-19 pandemic updates occurred on a quarterly basis and included stakeholders within the EHDI Advisory Board along with the EHDI health program administrator, OCSHCN medical director, and OCSHCN speech and hearing regional coordinators. The conversations focused on ways to mitigate the impacts of COVID-19 on newborn hearing screens and loss to follow-up.

 

OCSHCN had two employees serving on the KY Deaf/Blind Project (DBP) board in FY21. EHDI and audiology staff continued to attend meetings within the KDPH’s new board screening’s KY Birth Surveillance (KBS) meetings and served on the KBS advisory committee. In FY21, OCSHCN EHDI and audiology staff attended the national EHDI conference.

 

OCSHCN continues to collaborate with UK’s College of Medicine and with the University of Colorado-Denver School of Medicine’s Adult and Child Consortium for Health Outcomes Research and Delivery Science (ACCORDS), on a Family Check-Up research study through their Communities Harnessing and eMpowering Parenting Strengths (CHAMPS) project for the deaf and hard of hearing. The project is focused on building better support for families with kids who are deaf and hard of hearing and use hearing devices to determine the effectiveness of increased positive parenting strategies on lowering levels of disruptive behavior, improving compliance with hearing aid/cochlear implant use, and improving language development outcomes among deaf and hard of hearing preschoolers.  The EHDI program expanded the Early Childhood Hearing Outreach (ECHO) in KY that distributes Otoacoustic Emissions (OAE) equipment to Part C (KEIS) point of entry staff and provides training in service delivery and EHDI reporting procedures. OCSHCN district offices receive direct referrals from KEIS for any child at risk of hearing loss who cannot be screened or who fails the screening provided by KEIS. In FY21, 2,685 children were seen at OCSHCN offices for hearing evaluations and follow up. To ensure proper follow up occurs, the audiology program policy at OCSHCN allows any child “failing” a hearing screening provided at any facility (health department, physician office, school, pre-school, etc.) to be scheduled for diagnostic testing at OCSHCN district office at no out-of-pocket cost to the family.

 

OCSHCN partners with Hands and Voices to host a retreat for families with children diagnosed with hearing loss and other outreach activities to this population. An OCSHCN staff audiologist serves on the Board of Directors of the KY Chapter of Hands and Voices. In partnership with Hands and Voices, OCSHCN’s EHDI program has continued to sponsor the Guide by Your Side (GBYS) program, using specially trained parents of children who are deaf or hard of hearing to work as guides for parents just learning of their child’s hearing loss or who have older children and need the unique support provided by parent guides.

 

OCSHCN collaborates with the KY Commission on the Deaf and Hard of Hearing to provide sessions of sign language classes across the state that focused on families and interventionists working with children with hearing loss. OCSHCN continues to provide Autism Spectrum Disorder clinics. The clinics are open in areas of the state where services were not readily available in order to fill gaps in services. Two of OCSHCN offices in Morehead and Somerset have autism diagnostic clinics, while three other clinics in Bowling Green, Paducah, and Owensboro have medical Autism clinics. As mentioned in Core Outcome 2, OCSHCN used a new autism screening method by using a provider who was certified to diagnose autism via telehealth, which was very useful during the pandemic.

 

During this reporting period, OCSHCN continued to serve as a Part C Early Intervention Point of Entry for the KY Early Intervention System (KEIS) KIPDA Point of Entry (POE) including Louisville, the state’s largest city. The KIPDA POE is the largest in the state in terms of population served. The intended goal is to reach and serve more children with developmental disabilities, including CYSHCN who have previously been unaffiliated with the agency. The partnership ensures improved coordination of services and children needing continued services, as they transition out of Early Intervention Services, may be directed to care. Approximately 198 referrals per month were made to the point of entry with approximately 2,633 children being served in the fiscal year. The COVID-19 global pandemic continued to negatively impact KEIS services. KEIS worked to meet family’s needs during this time through tele-intervention services. In FY20, KEIS returned to face-to-face services while maintaining the tele-intervention option as another option for patient and families to receive services.  

 

Data from CDC, Behavioral Risk Factor Surveillance System for the state of KY shows that 36.6% of Kentuckians had a body mass index of 30.0 or higher while the national average was 31.9%.  In KY, the same report showed there was a wide disparity in obesity rates between racial/ethnic groups with a low of 34.0% and a high of 45.4%. Towards the goal of reducing obesity in the CYSHCN population, OCSHCN’s formal Healthy Weight Plan addresses prevention, identification/assessment, and intervention/treatment among the CYSHCN population, a group that often finds it more difficult to control weight and remain healthy. Many barriers exist; lack of time during clinic appointments, family lack of readiness to make changes, families not accepting that overweight/obesity is a legitimate concern, and families being more concerned with their children’s special health care need(s) than the risks of overweightness or obesity.

 

OCSHCN makes gentle efforts to overcome these barriers and works with others to advance solutions to community concerns beyond the scope of the agency. OCSHCN shares the 5-2-1-0 Healthy Children message with families and promotes healthy eating and physical activity in the community. During the reporting period that involved COVID, OCSHCN staff provided families information on dealing with food insecurity, access to healthy food, budget friendly recipes, and ways to stay active at home. OCSHCN participates in the Early Care and Education Healthy Eating and Physical Activity Committee of the Partnership for a Fit KY. The purpose of this committee is to improve access to healthy foods and beverage, screen time limits, physical activity, and breastfeeding in early care and education settings. OCSHCN’s participation in the programs continued in FY20 with monthly virtual meetings and periodic webinars. An OCSHCN nutritionist was there to represent OCSHCN and CYSHCN.

 

OCSHCN’s leadership and KEIS KIPDA POE staff continued its work with Healthy Babies Louisville, a collective of 68 organizations working to ensure that all babies born in Louisville Metro see their first birthday and beyond. Each organization implements practices and/or policies that impact women, men, children, and families across all stages of childbearing years. These evidence-based initiatives focus on making changes at the individual, community, and policy levels with special attention on serving our neighbors with the greatest risk in underserved areas.

 

In FY21, OCSHCN:

 

• Pre-screened for Medicaid/KCHIP eligibility and assisted with application as necessary, including assisting Cystic Fibrosis patients and their families to access coverage through PSI (Accessia Health), along with insurance care coordination and premium assistance.
• Helped families understand the provider lists given to them by their insurance/Medicaid provider.
• Distributed folic acid supplements to women of child-bearing age.
• Ensured that eligible parents can access care for their infant’s special needs through OCSHCN clinics and/or care coordination.
• Provided support and services to children aged birth to 3 years who have a developmental delay or a medical condition that is known to cause a developmental delay, through KY Early Intervention Services KIPDA region.
• Educated parents of newborns with/or at risk for hearing loss about 1-3-6:  screening by one month, diagnosis by three months, early intervention by 6 months.

 

 

MCHB Core Outcome #5: CYSHCN who can easily access community-based services

 

A range of activities continue under SPM #3, in accordance with the access to care and services priority. A wide variety of initiatives are underway, especially regarding reaching those CYSHCN not enrolled in clinical services. For FY16 through FY20, OCSHCN used an Access to Care Scorecard with 98.6% of the 25 goals being met.  A new scorecard has been developed based on the 2020 Needs Assessment.

 

Access to Care Scorecard

 

Fiscal Year	Points/75	Goal	Result
2016	61	-	81.3%
2017	68	90%	90.7%
2018	71	100%	94.6%
2019	71	100%	94.6%
2020	73	100%	98.6%

 

Elements that were fully implemented through FY21:

 

1. Enhanced clinics for Autism by increasing enrollment and offering additional services
2. Decreased wait time by improving OCSHCN clinic flow
3. Ensured insurance coverage as per strategies identified in SPM #5, such as serving as navigators and administering premium assistance programs
4. Educated pediatric residents regarding CYSHCN and maternal and child health in Kentucky
5. Funded University of Louisville pediatric neurology resident
6. Increased university partnerships with providers to serve disciplines outside OCSHCN medical eligibility through hybrid clinic model
7. Continued provision of hearing screening training to KEIS early intervention points of entry
8. Continued to provide gap-filling and direct care services
9. Continued OCSHCN participation in health information exchange
10. Participated in training to provide quality services to Autistic patients
11. Studied feasibility of increasing regional Autism assessment centers within OCSHCN offices
12. Partnered with DCBS to offer Foster Care Support programs to assure services for medically fragile youth in foster care as well as population in or at risk of placement outside the home
13. Developed and implemented a transitions component to the Hemophilia and Sickle Cell programs, in addition to other transitions efforts in conjunction with NPM #12             
14. Replicated the Una Mano Amiga program (non-English speaking support group) outside of the Louisville area
15. Continued efforts towards reducing “loss to follow-up” by referring those at risk to qualified audiology assessment centers
16. Continued EHDI partnership initiative with Early Start and Head Start 
17. Administered F2F program to assist with navigation of services
18. Provided care coordination and enabling services such as social work, therapies, etc.
19. Used social media to alert families of CYSHCN to services, events, resources, etc.
20. Implemented mini-grant program to fund projects which develop comprehensive systems of care and support among health care and other child services
21. Provided Autism screening services for families and providers to increase availability of services statewide             

 

OCSHCN targeted outreach to educate communities and providers about services provided through OCSHCN and set out to determine why in-person appointments were missed more than the telehealth appointments that expanded at the start of COVID.

 

A directory of OCSHCN services and providers is made available on the agency’s website and was updated in FY21. The directory details partnerships in addition to available gap-filling direct care services, and it details which services are available in which geographic areas. Care coordination continued in and outside of specialty medical clinics. Registered nurses partner with the family to develop a care plan incorporating an assessment of patient and family needs, therapist evaluations, and physician recommendations. Nurses often work with the school system and help with special accommodations at home.

 

OCSHCN continues to provide F2F and social work system navigation and resource brokering assistance. Through the initiation of OCSHCN-sponsored autism clinics and collaborative screenings, the waitlist for diagnostic and treatment has been shortened. Telehealth visits may occur for these families (as with those enrolled in OCSHCN neurology clinics).  Telehealth is an evidence-informed strategy improving access to care where there is a significant proximity to provider problem. OCSHCN’s standard practice is to coordinate among multiple disciplines, agreeing on a plan of care for and with each family. Ensuring communication among multiple providers is considered a vital part of the patient care experience, as are cutting down on wait time, improving clinic efficiency, and remaining respectful of a family’s time. In recent years, OCSHCN staff have presented at the AMCHP annual conference, the KY System of Care Academy, and the KY Rural Health Association, detailing OCSHCN services and describing innovative evidence-based practices such as visual storyboard scheduling, shared family experience, clinic flow outcomes, and provided a tool kit for other states. In FY21, OCSHCN and MCH staff presented at an AMCHP Title V partnership meeting, led a break-out session, and discussed the work KY is doing regarding health equity. 

 

Clinics have been redesigned as well; for example, the Louisville Cerebral Palsy clinic has become more comprehensive – children can be seen annually by the neurologist, physical medicine and rehabilitation specialist, orthopedic surgeon, and pulmonologist thereby addressing all the child’s needs in one visit. Children also see a nurse care coordinator, social worker, dietitian, F2F support parent, and therapists as needed. Representatives for orthotics are present should new braces or wheelchair adjustments be needed. The patients leave clinics with a care plan developed by the entire team and a care coordinator available to help navigate the health care system. In addition to those specialty clinics mentioned above, OCSHCN continues to provide services for qualifying conditions such as cleft lip and palate, craniofacial anomalies, cystic fibrosis, ophthalmology, cardiology, hemophilia, neurology, orthopedics, otology, therapy, and audiology services.

 

Better technology in the form of automatic opt-in text message reminders for clinic and non-clinic appointments was utilized from 2016 through 2019. In FY21, OCSHCN worked on contracting with a new provider to send text and email appointment reminder to families and settled on Granicus text messaging software. In FY22, Granicus text messaging software will be used to send appointment reminders to patients and families who opt into the service. 

 

OCSHCN uses contract help for audiology in busier offices to keep up with tests for patients without having them arrive so much earlier than the physicians. When pre-check indicates a heavier than usual clinic volume, contract speech-language pathologists are used as well, especially for a craniofacial anomalies clinic.

 

While OCSHCN continues to provide traditional gap-filling direct services, where waitlists exist, where services are not otherwise available, or a need for multi-disciplinary clinics exists, the agency uses its infrastructure to advance access to care in partnership with existing providers when possible. For example, the urology clinics are provided through the University of KY (UK) in the Morehead region, and NICU graduate clinics through UK are planned in three regions (Hazard, Morehead, Somerset). OCSHCN sponsored assessment for developmental disabilities in clinics located in Bowling Green, Morehead, Somerset, Lexington, Owensboro, and Paducah, with the potential to serve 90-100 patients per year. A genetics clinic through UofL operates in Paducah, Bowling Green, and Owensboro, and a similar genetics initiative has been the subject of discussion with the UK as well though progress was stopped at the start of the pandemic. In some clinics, only OCSHCN facilities are used. In others, OCSHCN may enhance care through staffing care coordinators, social workers, or support parents. The “hybrid clinic” model of collaborating with community and state partners not only augments care, but also limits duplication and fragmentation of services.

 

OCSHCN partially funds a social worker working with the University of Louisville Sickle Cell program in the area of transitions. Data from the program was presented as a poster at the 2018 AMCHP conference and may be found online as poster presentation PA7 at ‘eventscribe.com/2018/AMCHP/’. OCSHCN funds the state’s Hemophilia pediatric programs which occur at the UofL/Norton Healthcare and the UK. Both programs incorporate the Medical and Scientific Advisory Council (MASAC) transition guidelines into clinic visits and documentation at the patient’s yearly check-up. All providers and team members cover appropriate transition issues per the life stages. The exact MASAC guidelines were inserted into UK’s electronic medical record and is used as a checklist for the comprehensive clinic visits.

 

OCSHCN participates in the KY Health Information Exchange (KHIE). KHIE is a means to share patients' medical information electronically between all healthcare providers participating in the exchange. The exchange reduces duplicate services, improves quality of patient care, and makes the information more readily available versus faxing, mailing, or using the telephone. Patients are able to opt out of sending their data to the exchange if they choose.

 

The Special Needs Access Project (SNAP) reimburses up to $15,000.00 for novel projects that demonstrate an innovative process for the delivery of health care or related services and result in health and health services improvements for children and youth with special health care needs (CYSHCN) that reside in KY. This project was implemented in 2015 and continues today. OCSHCN has funded an ABA therapist and nurse in the past and, in FY21, provided a developmental specialist for two therapeutic riding programs – one in Paducah (Western KY) and the other in Lexington (Central KY). Both programs are for medically complex children and youth. OCSHCN provides funding for the KIDS Center for nutritional services and a monthly feeding clinic and Orchid House, a therapeutic day center for infants, where OCSHCN covers a portion of an RN care coordinator’s salary. OCSHCN also supports Easter Seals Lexington therapeutic horse-riding program. Two of the programs were placed on hold secondary to the pandemic.

 

Another underserved population, those with Limited English Proficiency, is served through the La Casita’s Una Mano Amiga (UMA) Spanish-speaking support groups. During FY21, 308 families attended. Due to COVID, La Casita started virtual meetings in March of FY20 and continued them into FY21. UMA’s connection to the Latino community in Louisville is extensive and meeting topics are geared toward expressed need. Identified needs include topics in the areas of advocacy (e.g., initiating meaningful summer programs), emotional support (e.g., crisis intervention, dealing with stress and exhaustion), outreach (e.g., educating teachers and interpreters, as well as reaching other Latino families), and education (e.g., documentation such as what educational records to keep). Hospitality services beyond support groups are offered to CYSHCN families by La Casita.

 

Another program, Un Abrazo Amigo (UAA), began serving CYSHCN families for Spanish speakers in the Lexington area in 2017. This program is led by Janeth Ceballos Osorio, MD, who is with the UK General Pediatrics.  The first support group meeting under Dr. Ceballos’s guidance was held in 2018 and continued until the start of the pandemic. Virtual sessions have been held each month throughout FY20 and FY21.

 

Louisville Urban League deploys community health navigators who conduct assessments and identify residents’ top areas of need and connect them with resources (such as OCSHCN). Assistance and follow up occurs as part of the “It Starts with Me!” program. The concept of “It Starts with Me!” is that there are many services, initiatives, and organizations doing good work, but they may not be reaching many of the residents who need them. The program aims to be the missing connector, and volunteers are equipped with information regarding OCSHCN services. OCSHCN worked with the Urban League and suggested a set of questions to add to their assessment regarding CYSHCN with the hope to identify issues that would benefit from a referral to a CYSHCN service provider. This program is completely free of charge.

 

As a strategy for improving access, OCSHCN provides education to both providers and the public on issues related to CYSHCN. Building on prior outreach and publicity efforts, (pediatric grand rounds presentations, presentations at state conferences, social media efforts, health fairs, “birthday bags” in state NICUs as needed), ongoing education has been provided to upper-level pediatric residents in Louisville.

 

Beginning in FY20, OCSHCN began having providers address staff to inform them of the most up-to-date information for different topics of interest. This started with a visit from Boston University staff that OCSHCN work with through the CoIIN Grant. These presentations continued throughout FY21 and expanded to other providers, nutritionists and other health professionals.

 

OCSHCN’s Facebook page currently has 2,383 followers. The agency posts 3-5 days per week. The posts cover topics that include health related awareness months, child and youth safety, health tips, and events for CYSHCN and/or their family. As a response to COVID, videos were posted such as “Let’s Be Healthy” campaign videos by our medical director. The goal of the Let’s Be Healthy videos was to take food commonly used in free meal program and turn them into easy, healthy snacks and meals for both parents and children. The videos were created with the idea in mind that parental nutrition is important to the child. These videos are shared on OCSHCN’s Facebook page. F2F reaches many additional families through handouts, trainings, the F2F Facebook page, and word of mouth.

 

MCHB Core Outcome #6: CYSHCN youth receive services needed for transition to adulthood

 

KY’s score on the prior transitions NPM based on services provided in the areas of health care transition, as well as preparation for independence, education, and skills needed for a career has reached 100% in FY21 for OCSHCN patients. OCSHCN believes that the Got Transition Health Care Transition “Process Measurement Tool for Transitioning Youth to Adult Health Care Providers,” has provided an appropriate scoring method to assess progress in implementing the Six Core Elements. In FY21, an update to the scoring model will be undertaken due to both reaching 100% and the 2020-2025 needs assessment. In the 2020-2025 needs assessment, OCSHCN chose to expand its transitions services to a population-based model for all children in the state.

 

The 2019-2020 NSCH survey of YSHCN 12-17 successfully achieving the transitions outcome scored KY at 22.8% as compared to 22.5% nationally. The following scores were the results calculated for FY21 from OCSHCN’s clinic survey. The results are the percent of Yes to No and do not include blank or ‘Don’t Know’ responses. Due to the COVID-19 pandemic the clinic survey was not conducted with regularity in FY21 with only 6 responses recorded. Of those 6, all questions were answered with a Yes.

 

Survey Questions	Percent Responding Yes
Has your child's doctor or other health care provider (e.g., nurses or social workers) actively worked with your child to: Think about a plan for the future? (For example, discussing future plans about education, work, relationships, and development of independent living skills)?	100%
Has your child's doctor or other health care provider (e.g., nurses or social workers) actively worked with your child to: Make positive choices about your child's health? (For example, by eating healthy, getting regular exercise, not using tobacco, alcohol, or other drugs or delaying sexual activity)?	100%
Has your doctor or other health care provider (e.g., nurses or social workers) actively worked with you to: Gain skills to manage your health and health care? (For example, by understanding current health needs, knowing what to do in a medical emergency, or taking medications you might need)?	100%
Has your doctor or other health care provider (e.g., nurses or social workers) actively worked with you to: Understand the changes in health care that happen at 18? (For example, by understanding changes in privacy, consent, access to information, or decision-making)?	100%

 

It is important to note that the scores above are for the children and youth that have been seen in OCSHCN clinics.

 

OCSHCN/F2F staff continued with their established activities, which included face to face planning discussions (for the part of year prior to COVID) with OCSHCN families and administering the Transition Readiness Assessment Checklist. The checklist documents what developmentally appropriate skills have been achieved, are in progress, or are a part of future expectations. OCSHCN conducts random statewide chart audits to verify that transitions services are discussed with CYSHCN and their families.

 

OCSHCN/F2F transfer of care planning activities began as a pilot project through the D-70 State Implementation Grant. Since then, transfer of care planning has become an established part of OCSHCN statewide processes. In each of OCSHCN’s 11 regions, OCSHCN has identified adult health care providers who are willing to take CYSHCN into their practice. To assist with the transfer, OCSHCN conducts preparation assurance activities, which include providing a portable medical summary. The OCSHCN transition administrator conducts regular follow-up calls to aged-out youth. Of the 24 patients/families reached in FY21, all 24 responded they had an adult health care provider for a successful transitions rate of 100%.

 

OCSHCN and F2F staff provided information via phone discussions, email, mail, fact sheets, and guides to youth transitioning to an adult provider and those ageing out of OCSHCN programs. Some of the topics included were:

 

• Existing Transition Services
• Guardianships
• Transitioning from High School to College
• Medical Homes
• Medicaid
• Social Security Income
• Supported Employment Options
• Vocational Rehabilitation

 

In FY21, OCSHCN and F2F staff attended meetings and reached individuals virtually. Before COVID, physical locations included middle schools and high schools, OCSHCN clinics, conferences, provider offices, and a variety of relevant special events. School events and some others were continued virtually after COVID. They have developed more relationships with school special ed directors which were developed in part due to IEP meetings. In addition to the individual and clinical level, OCSHCN also remains involved in the KY Interagency Transition Council for Persons with Disabilities.

 

OCSHCN staff participated in KY’s Regional Interagency Transition Teams (RITT) meetings and RITT personnel are in contact with the nurse administrator at the nearest OCSHCN regional office. The transitions coordinator for OCSHCN regularly attends the Jefferson County RITT, which is the largest in the state, while the Family-to-Family director attends the Green River Regional Educational Cooperative (GREC) RITT.