As OCSHCN looks to its 100th year serving CYSHCN in Kentucky, OCSHCN will continue collaboration with state and community partners to enhance population-based health care and increase access. OCSHCN will leverage technology including the CYSHCN Data Dashboard to inform decisions that will strengthen the state system of care for KY CYSHCN. 

 

OCSHCN will enhance support provided to the KY’s CYSHCN population, even as COVID-19 continues to reshape efforts. OCSHCN is committed to adapting with these changes to enhance the care that is provided to patients and their families. Feedback from surveys demonstrate that CYSHCN population views in-clinic changes and the use of telehealth in a positive way.

 

In conjunction with the strategies listed on the preliminary action plan table, OCSHCN submits the following updates:

 

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

 

In the 2020 5-year needs assessment, OCSHCN collected stakeholders’ ideas to inform decision making. In the coming year, OCSHCN will expand its shared decision-making by working with non-OCSHCN pediatric providers and patients by eliciting feedback on current services and gathering new ideas for care innovation. 

 

OCSHCN will continue to collaborate with several agencies to work heavily with the Hispanic population. OCSHCN will continue to train support parents to guide other Hispanic families, and increase the number of Support Parents to assist Hispanic families in navigating the U.S. medical system.

 

OCSHCN will continue quarterly Parent Advisory Council (PAC) and Youth Advisory Council (YAC) meetings. PAC and YAC meetings will meet via Zoom video communications, this meeting format removes obstacles to meeting participation.

 

OCSHCN previously enhanced the diversity of the YAC and PAC by adding a young person with Down Syndrome and a parent of a hearing-impaired child, respectively.   OCSHCN will seek opportunities to further diversify the membership of the YAC and PAC to identify any gaps in representation.

 

OCHSCN will continue to reintroduce Support Parents into clinics and utilize Support Parents' positions in clinics. OCSHCN will train additional Support Parents throughout FY24 to increase the pool of trained parents available to assist families throughout the Commonwealth.  In addition, OCSHCN will add Support Parent representation to transition teams, RIAC, SIAC, and to the AAP Autism Board.

 

OCSHCN recognizes families as the leaders of their child’s “team” when determining the optimal services through the OCSHCN KY Early Intervention System (KEIS) Point of Entry for the KIPDA region after consultation with service coordinators and providers. Families are informed of all available options so that services may be individually tailored to address their child’s specific developmental challenges.

 

OCSHCN increased access to services with tele-technology during the COVID-19 pandemic. OCSHCN personnel, providers, and families are now more familiar with tele-technology. OCSHCN will continue to utilize and expand the use of tele-technology with the Lending Library program that loans tablets to families for telehealth visits. OCSHCN will seek feedback from patients and families through surveys about tele-technology to refine use of this communication modality.  

 

Telehealth and home visits allow more family participation in care coordination, families, and patients opportunities to discuss care outside of clinic appointments. As part of OCSHCN’s care coordination effort, staff will plan team meetings with social workers, nursing staff, and therapists prior to IEP meetings to provide comprehensive recommendations that will assist families as they navigate the IEP process for their child.

 

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

 

OCSHCN staff will advocate that each patient establishes a medical home. OCSHCN will support providers of those medical homes by providing education on evidence-based practices through Project ACCELERATE (Advancing Care Coordination through Evidence, Leveraging Existing Relationships Around Transforming Practice). OCSCHN will strengthen and build relationships with primary care providers of medical homes by increasing outreach efforts. OCSHCN will encourage families to contact their MCOs for assistance with locating a medical home for their child.

 

In FY24, OCSHCN staff will conduct an audit of current patients’ records to ensure that patients have an established medical home in their area. Clinical staff will contact patients without a medical home to help with finding one. The information from an audit of current patients’ files will be compiled and reviewed to identify barriers to patients finding medical homes. The goal will be to enact OCSHCN procedures that facilitate establishment of a medical home for each patient.

 

In FY23, OCSHCN initiated a new collaboration with the University of Kentucky to fund a full-time social worker for the Infant Complex Care program. This social worker will follow infants with medical complexities from the neonatal ICU (NICU) to discharge home and follow-up in the Infant Complex Care Clinic. They will provide psychosocial support throughout this transition by directing families to community resources, developing local family/caregiver support groups, and linking families/caregivers with local and national disease-specific support groups. OCSHCN hopes to expand on this collaboration with the UK Infant Complex Care program by funding a one-year fellowship training program for pediatricians with an interest in caring for children with medical complexity.  The goal is that this collaboration will provide more children with medical complexities the comprehensive care that they require within a medical home.

 

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

 

OCSHCN is committed to providing families with one-on-one education and application assistance. OCSHCN front-line staff and support parents will participate with KY’s Health Benefits Exchange (Kynect), Healthcare.gov, and other trusted resources. KY re-launched its Kynect portal for Kentuckians to access health plans information. Kynect is a resource to educate families about coverage options and other benefits. OCSHCN “Kynectors” will receive continuing education on the Kynect portal about available health coverage, benefits, and resources. OCSHCN Kynectors will aid patients and families navigating the system. In FY24, OCSHCN staff will educate families on how to find local providers through their MCOs, OCSHCN will use the PAC to assist in this education. In partnership with the transitions team, OCSHCN will inform transition-aged youth about their insurance options as they prepare to move to adult healthcare.

 

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

 

OCSHCN will continue to improve care for children with Autism through the ECHO Autism primary care education series. The primary care series will include new and expanded topics that will engage primary care physicians by offering education, community resources and referral information. Monthly virtual session will increase primary care providers’ confidence in providing care to their patients with Autism. Participants post-session surveys and feedback on the primary care series has been positive to date. In FY24, OCSHCN will launch a second ECHO Autism program, Early Intervention. This program includes speech-language pathologists, occupational therapists, and other early intervention service providers. The program will enhance participants’ knowledge about, evidence-based practices and will build community support for individuals with Autism.

 

OCSHCN’s clinical dietitians and other clinical staff will administer the agency’s Healthy Weight Plan with a renewed focus, on collecting healthy weight data in an ever-changing population. The clinical dieticians will attempt to determine how the agency’s policies and procedures influence positively or negatively. To augment the Health Weight Plan initiative, OCSHCN will continue collaborating with the Partnership for a Fit KY coalitions locally and statewide. Additional activities of OCSHCN clinical dieticians will include visits with neonatologists at regional medical centers to educate them about the available OCSHCN and community resources that their patients’ families can access after NICU discharge. Additionally, clinical dieticians are developing educational materials for families of children requiring NICU care about common dietary concerns seen in neonates and when and where they find assistance.

 

OCSHCN will operate the KY Early Intervention System (KEIS) Point of Entry (POE) for the KIPDA region to ensure early intervention is available to infants in counties of the largest POE.  KEIS is actively hiring new staff to meet the demands for early intervention screening. OCSHCN will continue to coordinate interpreter services for KEIS clients throughout the state.

 

OCSHCN’s EHDI program will develop and plan to promote regular hearing screenings throughout childhood. EHDI will seek funding for this program for regular hearing screening up to age 3 years from HRSA. OCSHCN staff will consider risk factors for hearing impairment when evaluating the siblings of children who are hearing impaired. OCSHCN will refer to at-risk children for additional screenings and provide referrals to appropriate services.

 

The EHDI program will increase outreach and education to audiologists and physicians about risk factors for hearing loss in children. EHDI will use the "Risk Factor Fact Sheet” to increase physician awareness that an infant in their care has risk factor(s) for late onset or progressive hearing loss. The Risk Factor Fact Sheet is available to the public on the newly redesigned EHDI website. The EHDI website includes information for audiologists and physicians about follow-up steps for infants and older children who fail hearing screening.

 

OCSHCN audiology services provide, loaner audiometers to school systems for use in their hearing conservation programs. OCSHCN’s outreach to Head Start and Early Head Start Programs provides service delivery and staff training about hearing impairment and available interventions. By policy, OCSHCN provides diagnostic audiology testing (if a child “fails” hearing screening). This is available at no cost to the family through any one of OCSHCN’s regional offices. There are continued updates to the EHDI hearing reporting portion of KYChild to increase reporting providers and facilities, in addition interfacing was added to the CUP system to be consistent with the Joint Committee on Infant Hearing (JCIH) 2019 guidelines.

 

EHDI will establish a data sharing agreement with KY Hands and Voices that will enable direct referrals for hearing augmentation. This partnership will also provide family support for children who are diagnosed with permanent hearing loss. EHDI plans to publish training modules for speech language pathologists about interventions for children with hearing loss.

 

Finally, OCSHCN and EHDI translate family education materials about hearing loss into additional languages to promote equity in access to hearing screening and early intervention services for families whose primary language is not English.

 

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

 

As described in the Detail Sheet (Form 10-B) for SPM #3, OCSHCN will work on the revised Access to Care Plan over the next year, meeting the goals of the 5-year needs assessment.

 

OCSHCN’s revised goals include:

 

• Assist CYSHCN, families of CYSHCN, and first responders in optimizing their interactions to provide the best emergency care possible.
• Establish partnerships with community resources to maximize OCSHCN efforts to improve care coordination.
• Provide resources to CYSHCN and their families that promote resiliency.
• Facilitate early intervention by collaborating with neonatologists, newborn nurseries, neonatal intensive care units (NICU).
• Promote successful transitions from pediatric to adult health care by providing pediatricians with appropriate education and tools about the transition process.
• Use the ECHO model to educate providers on topics related to CYSHCN including Autism.
• Expand individualized care coordination services for children with medical complexities (CMC).
• Promote racial equity, diversity, and inclusion by identifying gaps in access to OCSHCN services and addressing these deficiencies.
• Ensure that all agency communications model racial equity, diversity, and inclusion.
• Engage immigrant and refugee populations with OCSHCN services and facilitate access to appropriate health care coverage.

 

In an emergency, the needs of CYSHCN and their families often differ from that of the needs of non-CYSCH,N due to the needs of medical equipment and care.  First responders may not have experience communicating with and caring for CYSHCN. OCSHCN will guide families on how to best relay vital medical information about their special needs child to first responders. OCSHCN will equip families in preparation for a medical emergency by instructing them on care in the home prior to the first responders' arrival. To enhance the comfort of the child in a medical emergency, OCSHCN will teach children how to identify different first responders by their uniforms and appropriate responses should they encounter a first responder.

 

OCSHCN will seek to develop partnerships with first responders so that OCSHCN staff may educate them about unique and often complex needs of CYSHCN in a medical emergency. To assist first responders to identify CYSHCN, OCSHCN will create identification methods such as window stickers or other identification tags that alert first responders to the presence of a special needs child.  

 

OCSHCN F2F Heath Information Center (HIC) Director will continue to develop a partnership with social workers at Vanderbilt Hospital in Nashville, TN to provide referrals to F2F Health Information Center services and supports to Kentucky families who receive medical care at Vanderbilt Hospital. Social workers can connect families to the OCSHCN F2F HIC support network to receive services, information, and a parent match. The open communication with Vanderbilt Hospital social workers and OCSHCN F2F HIC ensures that families receive information and support services during their hospital stay and at hospital discharge. 

 

OCSHCN leadership will support statewide inter-agency partnerships to provide resources to children with behavioral health needs through representation in the KY State Interagency Council for Services and Supports for Children and Transition-Aged Youth (SIAC). OCSHCN’s Executive Director is OCSHCN’s representative to the SIAC. The SIAC standing committees include:

 

• Social Emotional Health and Wellbeing
• Racial, Ethnic, and Equity Disparities
• Services Array; and Disability

 

OCSHCN supports the state’s two hemophilia treatment centers and coordinates the two craniofacial anomalies (CFA) clinics. In FY24, OCSCHN will work to provide flexibility and support for all hemophilia and CFA clinic operations. To identify areas for improvement, OCSHCN will collect data through a survey about the CFA clinics. COSHCN will refine the survey as needed as positive changes to clinic operations are enacted.

 

Guided by the Racial Equity Team (RET), OCSHCN will use the Government Alliance on Race and Equity (GARE) tool kit to eliminate racial inequities in its policies, practices, and programs to improve access to community resources for all. OCSHCN is committed to ensuring access by immigrant and refugee children and families. OCSHCN/EHDI will seek to expand access is through outreach to the 4 World Community Refugee Centers in the state. EHDI brochures on early hearing loss detection will be translated into 12 different languages and will be available to those at the World Community Refugee Centers. In addition, the F2F HIC program will work to make parent matches within these refugee communities.

 

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

 

Transition services for CYSHCN is a priority need for the Commonwealth and for OCSHCN. OCSHCN will assess pediatrician knowledge about transitions to adult health care by survey to tailor educational programs about transitions for the target audience. OCSHCN will use the GotTransition.org and AAP guidelines/best practices to develop resources for pediatricians.

 

OCSHCN’s transition team is using the information from GotTransitions.org to construct a survey that will evaluate the resources that are available to young adults. The survey will be distributed in FY24 to CYSHCN and non-CYSHCN youth. Information from the survey will be used to expand transition services to both CYSHCN and non-CYSHCN youth in KY.

 

OCSHCN participates in the Regional Interagency Transition Teams (“RITTs”) that seek to collaborate with agencies across the state, region by region.  F2F HIC and OCSHCN will work with RITT’s and schools to provide opportunities to learn about transitions such as local transition fairs. OCSHCN staff will also collaborate with community service providers including vocational rehabilitation, the Department of Community Based Services, Behavioral Health, and others to assist patients and families with transitioning to adulthood.

 

OCSHCN staff communicate/collaborate with community service providers (Vocational Rehabilitation, the Department of Community Based Services, Behavioral Health, and others) connecting patients/families with services/resources to assist them in transitioning to adulthood to the optimum ability of the patient. To further partnerships OCSHCN staff will attend community resource fairs to distribute information to families.

 

OCSHCN staff will continue to use the transitions checklist to prepare patients and their families for transition to adulthood. OCSHCN will distribute the F2F HIC transition booklet to families in FY23. The booklet including, accessing social services, options for independent living, and accessing higher education, and securing a job. Social workers will distribute the booklet in OCSHCN clinics. The new transitions administrator will complete transition checklist audits twice a year to verify completeness of transition efforts. 

 

OCSHCN staff will assist youth between the ages of 18 and 20 years in making an appointment with an appropriate adult specialist to begin transition process and ensure that transition is completed prior to age 21. To locate physicians that provide adult health care, the current physician referral contact list will be reviewed and updated.

 

Due to the retirement of the previous transitions program administrator, OCSHCN will hire a new transitions administrator. OCSHCN will re-evaluate the required qualifications and experience for this position to include experience with social services and social work. This will enhance the new transitions administrator’s involvement in care coordination and will support OCSHCN social workers. One of the OCSHCN transitions administrator’s tasks will be to follow up patients who have “aged-out” to identify and overcome the barriers to establishing of effective adult health care services. In addition, OCSHCN transitions team will distribute a revised transitions survey, to measure efficacy of OCSHCN’s current transitions program by gauging the patients’ and family’s understanding of, and preparation for the transitions process. The survey will also be distributed to patients and families who are not enrolled in OCSHCN services to compare CYSHCN patients’ preparedness for the transition to adult health to preparedness of non-CYSHCN patients in the Commonwealth. OCSHCN’s ultimate goal is to expand transition planning education and services to include all adolescents irrespective of the presence or absence of a special health care need.