As the nearly 100-year-old agency’s evolution continues, OCSHCN looks forward to continuing to collaborate with peer agencies in a way that will enhance population-based care for KY’s children and youth with special health care needs, particularly in the area of access. OCSHCN will leverage technical assistance resources to strengthen and better integrate the overall system of care for KY CYSHCN. 

While OCSHCN will strive to enhance the support provided to the KY’s CYSHCN population, the realities of COVID-19 continue to reshape our efforts in ways both known and unknown. OCSHCN had just begun to ease its COVID-19 restriction when the Delta variant of the virus came to the fore. As we continue through the pandemic, OCSHCN is committed to finding ways to adapt and enhance the care provided. OCSHCN has been conducting surveys on how well our population receives our telehealth services and the results have been robust and largely positive. 

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

As part of the 2020 5-year needs assessment, stakeholders’ ideas were collected to inform decision making. In the coming year, OCSHCN will be expanding its shared decision-making by working with non-OCSHCN pediatric providers and patients. 

OCSHCN will continue to collaborate with several agencies to work heavily with the Hispanic population and will continue to offer training to parents to support/mentor other Hispanic families by becoming Support Parents.

OCSHCN will continue asking for input from the Parent Advisory Council (PAC) and the Youth Advisory Council (YAC), which each meet separately on a quarterly basis. In FY21, all meetings with the PAC and YAC continued to be held via Zoom video communications which have assisted with overcoming the obstacle of travel for the members. Zoom is also used to work with the complex care medical teams. Also, in FY21, OCSHCN made advancements on the diversity of the YAC in PAC and will continue to do so in the coming year. One of the diversifications was to have a parent of a child with hearing issues on the PAC and to have a person with down syndrome on the YAC. OCSHCN plans to continue to monitor and pursue opportunities for diversification of input in the coming year. Outreach to parents and youth to serve on the YAC or PAC will continue.

Families are the head of the team and determine what early interventions their child will receive through OCSHCN’s KY Early Intervention System Point of Entry for the KIPDA region after hearing recommendations from services coordinators and providers.

As OCSHCN personnel, providers, and families have become more familiar with tele-technology due to COVID-19, OCSHCN has more easily handled the increased reliance on video communication. In the coming year, OCSHCN staff will continue to survey patients on our tele-technology and adapt to serve patients and families well even after the pandemic.

OCSHCN’s transitions administrator will continue to follow up with families of aged-out CYSHCN to assist with overcoming barriers, conducting quality assurance regarding transitions efforts, and gauging how much families understand. OCSHCN has expanded the criteria for calling the aged-out patients so that we call patients who have not been seen in an OCSHCN clinic in the last two years. OCSHCN’s goal since the 2020 needs assessment has expanded to the wider population, as opposed to just those enrolled in OCSHCN, by providing instruction and education to adolescents irrespective of having a special health care need. OCSHCN will continue to provide transition services to non-clinical audiology patients as a way to reach more of the CYSHCN population.

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

OCSHCN staff will continue to advocate for the concept of a medical home and provide support to existing providers in communities. OCSHCN’s participation in the CoIIN grant on children with medical complexity (CMC) concluded at the end of FY21.  In the final year of the CoIIN, OCSHCN focused on improvements to our care coordination for CMC through participation in Boston University’s Care Coordination Academy. One of the goals of the CoIIN grant was to increase the number of families reporting having a medical home. In its own direct services, the use of nursing care plans supports the measurement of individual outcomes and interventions through care coordination. OCSHCN has received positive feedback from the CoIIN team and has the second highest patient population count among all the states who worked in the grant. As part of sustainability, OCSHCN will continue to collaborate with the University of Kentucky’s infant complex care team. The expansion of transitions services from only focusing on OCSHCN clinic patient to all adolescents in the state, with or without special health care needs, will assist all adolescents in the state to receive appropriate care into adulthood.

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

OCSHCN remains committed to enrolling families in one-on-one education or application assistance. OCSHCN front-line staff and support parents will continue participation 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 and has expanded to include benefits and resources. OCSHCN “kynectors” will receive continued education on the Kynect portal and the available health coverage, benefits, and resources and will continue to provide assistance to patient and families in navigating the system.

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

OCSHCN has been working to improve services to children with autism and staff continue to meet with and develop plans in accordance with the University of Missouri’s ECHO Autism collaboration project. OCSHCN launched the ECHO Autism program in FY22 with a wealth of pediatric autism specialists that offers education, resources, and referral information to pediatricians throughout the state of KY. This monthly virtual session provides improved access to services in the care of children with Autism. The new service of doing remote autism assessments, which began in FY20, will continue to expand. 

OCSHCN’s dietitians and other clinical staff will continue to administer the agency’s Healthy Weight Plan, focusing on how to collect healthy weight data with an ever-changing population, possibly initiating chart reviews of individual longer-term patients to determine whether the agency’s processes positively or negatively affect outcomes in any way, and it will continue to collaborate with the Partnership for a Fit KY and coalitions locally and statewide

OCSHCN audiology is committed to supporting and promoting periodic hearing screenings throughout childhood. The EHDI program will continue to use and develop as needed it’s “Risk Factor Fact Sheet” which is disseminated to physicians when an infant on their caseload is identified as having a risk factor for late onset or progressive hearing loss. The Risk Factor Fact Sheet is currently posted on OCSHCN publicly facing webpage as well as making audiologists across the state aware of the Risk Factor Fact Sheet. The fact sheet includes pertinent information regarding appropriate follow up protocols that should be initiated. As part of OCSHCN audiology services, loaner audiometers are made available to school systems for use in their hearing conservation programs. Our outreach to Head Start and Early Head Start Programs provides service delivery and staff training. By policy, OCSHCN makes diagnostic audiologic follow up (in the event of a “failed” hearing screening) available at no cost to the family through any one of OCSHCN’s regional offices.

OCSHCN will continue to operate the KY Early Intervention System Point of Entry for the KIPDA region.

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 its new Access to Care Plan over the next year. The Access to Care Plan has been revised this year based on the 5-year needs assessment. OCSHCN is working towards more integrated and coordinated care and increased access considering well-planned telemedicine expansion informed in part by the recent expansion of telehealth due to COVID-19, replication of the Spanish-speaking support group programs outside of the Louisville pilot area and subsequent Lexington program, and administration of the F2F, care coordination, and social work programs to assist with navigation of services. The hybrid clinic model put into place and modified due to the pandemic will continue to develop.

OCSHCN will continue to have the telehealth lending library in which the equipment needed for telehealth will be loaned to families. With the delivery, there are instructional videos on telehealth and some items they can keep.

Continuous education of both OCSHCN contracted and some non-contracted medical providers occurs through the OCSHCN Medical Director, implementation of the ECHO Autism project, and expansion of video library postings.

OCSHCN is working with the state’s two hemophilia treatment centers to provide more flexibility and support for operations. To further the goal of collecting better data, OCSHCN will explore how to refine the non-clinical data tool to more effectively measure the numbers of non-OCSHCN enrolled CYSHCN who may receive enabling or public health services through partnerships.

OCSHCN’s Executive Director chairs KY’s State Interagency Council for Services and Supports to Children and Transition Aged Youth (SIAC) that focuses on improving the system of care for those with behavioral health needs.  SIAC standing committees include Social Emotional Health and Wellbeing; Racial, Ethnic, and Equity Disparities; Service Array; Outreach and Promotion; and Disability.  OCSHCN will continue to have representation on SIAC and work to improve behavioral health of Kentucky’s children and youth.

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

Transitions continues to be a priority need. OCSHCN intends to ensure conformity with Got Transition and AAP guidelines/best practices as described in the State Action Plan Table. OCSHCN will begin with surveying pediatricians on their transition awareness and processes. Results will inform OCSHCN’s education efforts.

F2F will continue to work with the Midwest Genetics Collaborative on updating videos and other materials on understanding genetic telehealth medicine done in previous years. OCSHCN will continue working with families and professionals to understand the importance of transition for children with special needs.

OCSHCN works with Regional Interagency Transition Teams (“RITTs”) that are based off the 9 Special Ed Co-op districts across the state, (that were designed to help agencies collaborate better at the regional level to support youth). F2F and OCSHCN staff will continue to participate in the Regional Interagency Transition Teams to collaborate with schools with planning for transition activities, such as local transition fairs.

F2F will participate in a 12-session AAP ECHO project for Duchenne muscular dystrophy with the Children's Hospital in Ohio, Nationwide Children’s, Vanderbilt and others. Our F2F director presented a case study at the last ECHO. A presentation will be made to the Texas VCTC team on KY’s VCTC program. The F2F director will participate in a sickle cell project with the Genetic Collaborative for Region IV.

OCSHCN staff will continue to utilize the transition checklist to work with patients and their families on transition issues to assist patients to plan for transitioning to adulthood. As appropriate staff communicate/collaborate with community service providers (Vocational Rehabilitation, the Department of Community Based Services, Behavioral Health, and others) in order to connect patients/families with services/resources to assist them with transitioning to adulthood to the optimum ability of the patient. As appropriate OCSHCN staff attend community resource fairs to give information to families.

OCSHCN partially funds a social work position at the University of Louisville Sickle Cell and Hemophilia pediatric program to ensure their successful transition to adult providers.

The transition administrator will continue to complete transition checklist audits twice a year to verify that OCSHCN staff are continuing to provide transitions services. In the coming year, the physician’s referral list that OCSHCN uses will receive a thorough review and update to facilitate staff helping a wider population of adolescents in transitioning to adult health care providers.