The Office for Children with Special Health Care Needs (OCSHCN) has leveraged partnerships to strengthen and better integrate the overall system of care for KY’s CYSHCN population. OCSHCN staff launched the ECHO (Extension for Community Healthcare Outcomes) project for OCSHCN’s ECHO Autism program to empower and support primary care physicians to care for their patients. OCSHCN’s mission is to enhance the quality of life for Kentucky’s children with special health care needs through quality service, leadership, advocacy, education, and collaboration. Through the work of 12 statewide locations, serving all 120 counties across the state OCSCHN staff work diligently to care for patients and families by providing comprehensive care, support services, and access to medical care and resources throughout Kentucky.

 

 

OCSHCN submits the following updates organized around the six MCHB core outcomes for children and youth with special health care needs for FY22:

 

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

 

OCSHCN strives to partner with families in their child’s care by seeking caregiver feedback about services through surveys and by eliciting input through Parent and Youth Advisory Councils.  

 

According to the 2020-2021 National Survey of Children's Health (NSCH) 47.4% of KY’s CYSHCN families answered ‘always or usually’ for Core Outcome #1 with ‘sometimes or never given’ 5.9% of the time by Kentuckians versus 8.6% nationally. OCSHCN survey a random sample of 20% of its 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 2022,90% of families responded that the doctor always helped them feel like a partner in their child's care.

 

The OCSHCN Parent Advisory Council (PAC) and Youth Advisory Council (YAC) are avenues for family participation and collaboration. The goal is for families to be involved in the policies that affect them and to gain a greater understanding of how to advocate for themselves and their children. We understood that we needed to add more members to the YAC and PAC and increase the committee's diversity in terms of diversity of diagnosis and experience. In FY21, the PAC and YAC addressed this need by adding to the YAC a member with autism and another with a genetic disorder and to the PAC a parent of a hearing-impaired child. Virtual meetings were used primarily throughout FY21 and in FY22, OCSHCN continued to discuss with the YAC how to best communicate and meet virtually during COVID-19. There were continued discussions with PAC about their experience using telehealth, with most parents having had some experience with telehealth, OCSHCN continues to incorporate telehealth services and has received positive feedback from families who are able to attend appointments virtually when situations arise that would have previously led to appointment cancellations.  

 

OCSHCN Family to Family Health Information Centers (F2F HIC) provide an additional level of comfort and encouragement for parents and families. OCSHCN F2F HIC Director and support parents continued to counsel families about available services and resources in their area. Obtaining prescriptions continuing to be an issue for OCSHCN families, due accessibility in relation to COVID-19 and nationwide prescription shortages.

 

F2F HIC support parents continue to be a vital resource for families in FY22. Families are given the opportunity to work with trained support parents through their conversations. Families who talk with a support parent often realize they have had some of the same experiences and feel comforted in sharing difficulties they may have encountered and feel less alone in the struggles they may be experiencing. Once families get more comfortable talking to the support parent, they often reveal other needs they have.

 

To the extent possible, the F2F HIC 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 these instances, OCSHCN F2F HIC relies on their partnership and affiliation with the National Parent to Parent Organization, which has partnerships in 38 states. This joint venture assists with an increased reach of F2F HIC suitable parent matches. Those organizations include entities such as the AAP Home Care Board (our F2FHIC director has served for four years and her term will end in FY23), Family Voices, KY Council for Persons with Developmental Disabilities, and with the University of KY Human Development Institute. Title V investment in KY includes coordination of the F2F HIC program, a critical initiative addressing the needs of the CYSHCN population.

 

F2F HIC continues to work with the PAC, YAC, and the EHDI Advisory Board. F2F HIC had significant involvement with Children with Medical Complexity Collaborative Improvement and Innovation Network (CoIIN) from March 2019 to February 2021.  

 

Family to Family – Count of Families and Professionals Served
 

Outreach Type	Families		Professionals
	FY21	FY22	FY21	FY22
One-to-One Assistance	727	661	162	347
Partnering in Decision Making	2,525	3,011	5,860	1,504
Accessing a Medical Home	576	628	1,277	135
Transitions	821	828	851	N/A

 

In FY22, F2F HIC has worked with 4,394 families and worked with 583 professionals on navigating systems and accessing community services. F2F HIC has 30 categories it focuses on such as home care, respite care, and social determinants of health.

 

F2F HIC conducted outreach involving CoIIN, resource fairs, Community Collaboration for Children, the Owensboro and Bowling Green Special Needs Expo, statewide Stand Against Child Abuse events, and other events with community partners. F2F HIC staff and support parents attended IEP’s and 504 meetings with families. F2F HIC conducts a support group in collaboration with schools called the Care Giver Support Group. F2F HIC 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, as well as relatives caring for children whose parent is incarcerated. F2F HIC staff work with the UP in KY(UPKY) which consists of approximately 15 different organizations, mostly family run.

 

In FY22, OCSHCN F2F HIC created and implemented training programs to help Kentucky families including, a training for families on implementing telemedicine. These trainings were provided in both English and Spanish. Family Voices training was provided to inform families on the legislative process and how to speak to their legislators as an advocate for their needs of their children.F2F participated in virtual townhall meetings with KY Medicaid for the redesign of the KY based waiver.

 

CHFS Office of the Ombudsman and Administrative Review (OOAR) forwards needs and/or concerns of Kentuckians regarding their children with special health care needs to OCSHCN. Based upon the request, a member of OCSHCN’s Intake and Eligibility team or OCSHCN F2F HIC Director will reach out to the family member. The concerns that are received by OOAR are frequently forwarded from the Governor’s Office of Constituent Services.

 

In addition, OCSHCN has a toll-free number, and a comment line that is available for families. Relevant calls are forwarded to the appropriate department. OCSHCN directly surveys families to assess family satisfaction with OCSHCN services. F2F offers a resource library with a wide array of materials for families and assists families in finding resources online.   F2F HIC director is consulted by the MDA Clinic at the University of Louisville (UofL) and at an autism clinic located in rural southeast KY. OCSHCN/F2F HIC staff work in partnership with families to support their decision-making regarding health care and individualized treatments.

 

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

 

In Kentucky, 25 of 120 Kentucky counties meet the criteria for a physician Health Provider Shortage Area (HPSA). Forty-Three (43) of 120 Kentucky counties meet the criteria for a primary care physician Health Provider Shortage Area (HPSA) and almost a third of Kentucky physicians have been licensed between 31 and 50+ years (32.3%). Almost half of Kentucky primary care physicians work in Fayette and Jefferson counties. Many Kentucky families are opting to see family care and adult providers or use quick care clinics in response to the shortage of pediatric options in Kentucky counties.   

 

Although providers were limited, OCSHCN supports the concept of a medical home that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective. OCSHCN nurses and staff work diligently to educate families on the importance of a medical home and establishing care with a provider instead of depending on quick service clinics or emergency room visits in times when it would be more appropriate to visit a primary care physician.

 

According the 2020-2021 NSCH, the percent of CYSHCN age birth-17 who have a medical home in KY was 42.1% while nationally it was 42.0% 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. Many CYSHCN receiving care coordination services also received care through OCSHCN specialty clinics.  For example, in the OCSHCN Autism Clinic the nursing staff contact primary care physicians to discuss neurologist and psychiatrist recommendations, as it relates the to the use of stimulant medications, therapies, and Durable Medical Equipment (DME). In this way, clinics and providers are working hand in hand to assure the identified needs of patients and families are being met.  

 

Through care coordination services, an OCSHCN registered nurse works with a family to create a plan of care that is specific to 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 also a component of new support parent training. F2F HIC assisted 628 families toward the medical home outcome and 135 professionals in FY22.

 

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

 

Adequate insurance coverage is a priority issue for Kentucky (SPM #5). The NSCH reports that in 2020-2021 68.4% of CYSHCN in Kentucky were adequately and continuously insured, compared to 63.6% nationwide. Kentucky ranks 13th highest in providing continuous and adequate insurance for the CYSHCN population. 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 social workers and F2F HIC 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.   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’s developmental screening program is available to any child in KY from birth to 3 years of age. OCSHCN and F2F HIC staff assist CYSHCN and their families through KY’s Early Intervention System (KEIS), as well as referrals to other assistance programs, including a home visitation program through KY Health Access Nurturing Development Services.

 

KY EHDI program reports 99.6% of infants have completed the screening process for hearing loss prior to one month of age, which is an increase from 98.3% in FY21. 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 FY22, OCSHCN was successful in increasing reach to midwives, working with committees that typically won’t work with government agencies and those delivering at home . This provider population was successfully added to the electronic reporting system known as KYCHILD/KY Online Gateway to report homebirths and newborn screening sooner.

 

OCSHCN collaborated with midwives  to provide equipment for hearing tests. In FY22, OCSHCN has procured the equipment and  developed a loaner program for midwives and facilities. 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 is continuing its fourth year with the 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.

 

KY Child 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 third year of grant funding from both HRSA and the CDC, both are for 4-year cycles.

 

In FY22, the EHDI Advisory Board meetings met on a quarterly basis  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 on-going impacts of COVID-19 on newborn hearing screens, diagnostics, early interventions, and the loss to follow-up in those services. This is especially true regarding hospital staffing shortages and the fluctuating rates of COVID-19 infections that continued in FY22 across the Commonwealth and caused hospitals to discharge patients without hearing screenings. EHDI stakeholders are observing a pattern of late identification of hearing loss in children born during the height of the pandemic as they reach the age to enter early childhood educational programs.  EHDI continues to work with birthing hospitals to provide consistent screening and reporting to ensure that children are provided services as early as possible.

 

The KY EHDI program is working with some birthing hospitals to encourage better reporting of identifying information of those who have historically been below the state average in this area. Increased reporting will assist in monitoring an infant’s journey through EHDI.

Regarding updates to the “AUF”, audiology update form/module in our state reporting system, while Kentucky EHDI made intentional effort to improve the fields of early intervention (EI) data, to report a referral more accurately to Part C or other EI, the success of this is limited in scope. This is due to the longstanding difficulty to receive data from the Part C organization known as Kentucky Early Intervention System (KEIS), so any information that we do have about the “6” in EHDI 1-3-6 benchmarks is based on individually reported provider knowledge. OCSHCN currently has no way of ascertaining EHDI outcomes to early intervention overall. OCSHCN will continue to make strides to secure a data sharing relationship, having developed new strategies to address the issue.

 

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.  

 

In FY22, OCSHCN had two employees serving on the KY Deaf/Blind Project (DBP) board. EHDI and audiology staff attended meetings within the KDPH’s new board screening’s KY Birth Surveillance (KBS) meetings and served on the KBS advisory committee. In addition, 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  to provide training on providing Otoacoustic Emissions (OAE) screenings to Part C (KEIS) point of entry staff and provide 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 FY22, 3,577 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.  In FY22, nursing staff in theBowling Green clinics were educated on how to administer Automated Auditory Brainstem Response (AABR) to assist with the increase in referrals received for infants who failed their AABR screening in the hospital. 

 

In FY22, the process began to evaluate the resources available on the Early Hearing Detection and Intervention (EHDI) website. The previous website was limited to the information that was available and was not an expansive resource for families and  providers to gain information. The process to update the website began with a discussion of the EHDI advisory board and the OCSCHN Information Officer  to gain feedback from Kentucky Hands and Voices Parent Coordinator and Assistant Director. The goal of the website is to be an inclusive tool with interactive information, printable outreach, and educational materials we well as, short videos that can be incorporated during patient visits. The development team has used the Government Alliance on Race and Equity (GARE) tool as a guide in the development of the EHDI website. The goal is to launch the website in FY 23. 

 

OCSHCN continues to provide Autism Spectrum clinics. The clinics are open in areas of the state where services were not readily available to fill gaps in services. Two of OCSHCN offices in Morehead and Somerset offer autism diagnostic clinics, and an additional three clinics in Bowling Green, Paducah, and Owensboro offer medical Autism clinics. In July 2021, a medical clinic was launched in Somerset, with plans for an additional medical clinic in the Morehead region. As mentioned in Core Outcome 2, OCSHCN used a new autism screening method by utilizing a provider who was certified to diagnose autism via telehealth, which was useful tool during the pandemic. In addition to screening for autism, the ECHO Autism Program launched in April 2022. The ECHO Autism Program  instructs primary care physicians to review the diagnostic criteria, methods for screening for children at risk for autism and assists the primary care physician in anticipating problems associated with autism. ECHO Autism Program works to empower primary care physicians to care for their patients with suspected or known autism while they await definitive diagnosis and treatment in either OCSHCN sponsored autism clinics or referral centers.

 

The Morehead office provides an ECHO Autism booklet to hand out to child who obtain the Autism Diagnosis.  This booklet is a 100 Day Kit for newly diagnosed families of young children.  It is a tool kit to assist families of young children to accessing the critical information they need in the first 100 days after an autism diagnosis.  It is designed to assist families of children recently diagnosed with autism during the critical period following an autism diagnosis.  The kit includes basic information about autism and its symptoms, tips for dealing with a child’s diagnosis, information about therapies and treatments. forms to help parents get organized, a comprehensive list of resources and more.  The Morehead office also provides a packet filled with education information and additional resources for them to utilize.

 

During this reporting period, OCSHCN served 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.

 

KEIS Services Coordinators complete the Ages and Stages Screeners to indicate a possible developmental delay and speak with families to review concerns and documentation. Service Coordinators assist with intake paperwork and determine eligibility for the program. KEIS provides occupational therapy, physical therapy, developmental intervention, social work, and audiology assessments. Through the partnership with OCSHCN the services of speech language pathologists, dieticians, and teachers of the deaf, hard of hearing and visually impaired are available for resources and support. KEIS updates family planning every six months to ensure appropriate services are being provided.  Approximately 220 referrals per month were made to the point of entry with approximately 2,733 children being served in the fiscal year.  The COVID-19 global pandemic continued to negatively impact KEIS services. 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 36.5% of Kentuckians had a body mass index of 30.0 or higher while the national average was 32.0%.  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 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 FY22 with monthly virtual meetings and periodic webinars. An OCSHCN clinical dietician was there to represent OCSHCN and CYSHCN.

 

 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 Accessia Health (previously PSI), along with insurance care coordination and premium assistance.
• Helped families understand the provider lists given to them by their insurance/Medicaid provider.
• 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.  A scorecard was implemented based on the 2020 Needs Assessment.

 

Previous Access to Scorecard for FY16-21

 

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
2021	75	100%	100%

 

Access to Care Scorecard

 

Fiscal Year	Points/30	Goal	Result
2022	12	10	40%

 

Elements that are in progress in FY22:

 

1. Provide resources to assist CYSHCN and their families to best interact with first responders. Likewise, provide resources to assist first responders in working with CYSHCN.
2. Establish new partnerships that offer services closer to where patients and families live, with OCSHCN providing care-coordination. Expand reach to serve the population more efficiently.
3. Offer resources for CYSHCN and their families around resiliency by providing tools, resources, and positive parenting information.
4. Collaborate with neonatal providers, newborn nurseries, NICU staff, and other stakeholders to facilitate early intervention, treatment, and follow-up for NAS.
5. Increase and tailor existing care-coordination services for children with medical complexities.
6. Engage with immigrant/refugee centers in to explain OCSHCN services to ensure access to health care/insurance coverage. Identify and establish an ongoing contact point for each center serving immigrants in Kentucky.

 

Elements that were fully implemented or at a sustaining level through FY22:

 

• Utilize the ECHO model to educate providers. Initiate ECHO Autism and other topics based on system need.
• Find CHFS approved resource which outlines how racial equity, diversity, inclusion, and access should be considered in agency materials/communications. Review OCSHCN websites and documents with the tool. Implement plans to address any identified issues.

 

OCSHCN’s participation and collaboration with state, local and non-profit agencies throughout the Commonwealth assists in expanding access to community-based Services and resources to CYSHCN families and meet the goals of the Access to Care Plan. 

 

OCSHCN has expanded outreach and education to community partners and providers to educate and promote OCHSCN services and resources. OCSHCN staff increased outreach opportunities in FY22, OCSHCN completed 156 outreach events in FY22, compared to 48 outreach events in FY21 this included participation at the Kentucky State Fair, presentations to primary care physicians, therapy clinics, schools, parent advocacy groups and local health departments. OCSHCN participates in outreach opportunities in-person and virtually to amplify the reach of OCSHCN services and community-based resources for the CYSHCN population.

In the event of an emergency, the needs of CYSCHN often differ from those of non-CYSHCN children. To assist families and first responders in the event of an emergency OCSHCN clinics have provided resources to alert first responders. The Paducah clinic participates in the Yellow Dot program, distributing information packets that include a form to complete including personal and medical information that a first responder would need to know when caring for a child in an emergency. A yellow dot sticker is also provided to place on the caregiver's car to alert first responders that a child with a special health care need is inside the vehicle.

 

The Morehead clinic developed cards for parents to present to first responders that say, “My child’s behavior may be puzzling to you: My child has Autism Spectrum Disorder. We are doing the best we can. Thank you for understanding.” This card includes a description stating, “autism is a neurological difference that impacts communication, sensory processing, and social interactions, and behavior. Autism is not a discipline issue, my child experiences the world differently than you and I do and may be reacting to pain, sensory overload, frustration with communication, or a sense of panic.” In addition, Morehead social workers provide handouts to families to access 911 emergency and how to complete an emergency call effectively.

 

Connection with state agencies provides opportunities to extend additional services and resources to OCSHCN families. The OCSHCN’s Executive Director served as the chair of the State Interagency Council for Services and Supports to Children and Transition-age Youth (SIAC) in 2021 and 2022. The SIAC council consists of 13 child serving organizations, a youth, a parent of a child or transition-age youth with a behavioral health need, and a member of a nonprofit family organization. SIAC strives to design and implement a system of care that is youth- and family-driven, community-based, culturally- and linguistically responsive, trauma-informed, and recovery-oriented. 

Annually, SIAC provides recommendations to the Governor and Legislative Research Commission.  

OCSHCN continues to expand relationships with existing partnerships. The Louisville Cerebral Palsy clinic provides  comprehensive services – children can be seen annually by the neurologist, physical therapist, orthopedic surgeon, and pulmonologist thereby addressing the majority of the child’s needs in one visit. Children also see a nurse, care coordinator, social worker, registered dietitian, F2F HIC support parent, and therapists as needed. Representatives for orthotics are present should new or current braces, wheelchair adjustments or other orthotic medical equipment needs may be addressed at the time of the appointment. The patients leave clinics with a plan of care developed by the entire team and a care coordinator available to help navigate the health care system. 

 

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 monthly through the University of KY (UK) in the Morehead region. The UK Urology clinic has increased availability to care for families in that region. Through the Urology clinic the Morehead staff have used the opportunity to inform Urology clinic families about additional OCSHCN services available. The “hybrid clinic” model of collaborating with community and state partners not only augments care, but also limits duplication and fragmentation of services.   In addition, OCSHCN uses contract help for Audiology in busier offices to keep up with tests for patients without requiring patients arrive 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 multidisciplinary clinic.  

 

OCSHCN provides F2F HIC and social work system navigation and resource brokering assistance. Through the initiation of OCSHCN-sponsored autism clinics and collaborative screenings. Telehealth visits may occur for 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. 

 

OCSHCN continues to provide gap filling services for qualifying conditions such as cleft lip and palate, craniofacial anomalies, autism ophthalmology, cardiology, hemophilia, neurology, orthopedics, otology, therapy, and audiology services.  

 

OCSHCN partially funds a social worker working with the Norton Hospital Sickle Cell program in transitions. OCSHCN provides oversight of the state’s Hemophilia programs which serves infants through adulthood. There are two Hemophilia Treatment Centers located in Louisville and Lexington.  Outreach clinics are hosted twice a year in collaboration with OCSHCN at our Owensboro and Barbourville offices. The University of Kentucky provides resources in Prestonsburg, Somerset, and Barbourville clinics by providing staffing while OCSCHN staff facilitates care coordination services. 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 discuss 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.  

 

To ensure families received support and resources care coordination continued in and outside of specialty medical clinics. Registered nurses’ partner with families to develop a plan of care, incorporating an assessment of patient and family needs, therapist evaluations, and physician recommendations. Nurses collaborate with the school system and assist with special accommodations at home. For example, a physical therapist from school may come into an OCSHCN clinic to assess needs for a child while utilizing  interpreter services to ensure the child and family understand the need for bracing or additional durable medical equipment. OCSHCN staff attend Individualized Education Program (IEP) meetings to ensure a child is receive supportive services based on how a medical diagnosis may impact educational opportunities.  

 

To increase access 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 can opt out of sending their data to the exchange if they choose. 

 

OCSHCN is expanding opportunities to provide resources to families, the OCSHCN website provides a directory of OCSHCN services and providers and is continuously updated. The directory details partnerships in addition to available gap-filling direct care services, and details services are available in a particular geographic area.  OCSHCN’s Facebook page currently has 2,366 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, vaccination information for COVID-19 and flu vaccines, local and national education opportunities, job postings to assist with recruitment of staff and events for CYSHCN and/or their family. The OCSHCN Facebook page has grown in FY 22, and experienced 147 new likes, 924 new visits to the page, and is reaching an audience of 17,886 individuals.  Information Center reaches many additional families through handouts, trainings, the F2F HIC Facebook page, and word of mouth. 

 

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.  SNAP grant recipients are providing the following to CYSHCN through programs across the Commonwealth; an Applied Behavioral Analyst (ABA); Pediatric Clinical Dietician; Pediatric Physical Therapist; Pediatric Occupational Therapist; Pediatric Speech-Language Pathologist, and RN Care Coordinator.  

 

In FY22, the Bleeding Disorders of Kentucky organization hosted Camp Fusion, a camp for 16 Kentucky youth who have been diagnosed with a bleeding disorder. The weeklong camp was staffed by medical personnel and counselors that led activities focused on the mindfulness initiative with topics including self-worth, self-confidence, facing fears, stress management, empowerment, advocacy, and individual strengths. Youth participated in nightly discussions on bleeding disorder education, nutrition, PT and joint health. The OCSHCN SNAP grant supported this camp to provide a safe outdoor experience for children and youth with bleeding disorders. Camper feedback was collected through an online survey and the results were positive, one camper stated, “it was amazing, I can’t wait to go back!” The camp was deemed a success for campers and counseling staff.

 

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, an average of 308 families attended, there was an increase to an average of 392 families in FY22. Due to COVID, La Casita continued virtual meetings into FY22. 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. In June 2022, La Casita hosted a community event that provided 679 services to 163 individuals, during the event La Casita hosted workshop groups providing diapers, wellness kits, COVID-19 vaccines, EAAP interpretation services and counseling. 

 

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 FY22.

 

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), ongoing education has been provided to upper-level pediatric residents in Louisville.

 

OCSHCN continue efforts to meet the objective of improved resources and awareness of racial equity, diversity, inclusion and access, the OCSHCN’s Racial Equity Committee and Support Services staff are utilizing two tools the Government Alliance for Racial Equity (GARE) Racial Equity tool, and the Inclusive Language Guidelines. The OCSHCN Racial Equity Committee is mindful of the reading level of the resources made available to ensure that all communication is printed at a reading level no higher than that of a typical eighth grader.  The tools are used for all communication printed and listed on the OCSHCN website. 

 

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

 

KY continues to improve efforts to assist in the transition of CYSHCN youth to adulthood, 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 the 2020-2025 needs assessment, OCSHCN chose to expand its transitions services to a population-based model for all children in the state.

 

The 2020-2021 NSCH survey of YSHCN 12-17 successfully achieving the transitions outcome scored KY at 26.4% as compared to 20.5% nationally. The following scores were the results calculated for FY22 from OCSHCN’s clinic survey. The results are the percent of Yes to No and do not include blank or ‘Don’t Know’ responses. In FY 22, 96 OCSHCN clinic surveys were completed, which is a significant increase from 5 completed surveys in FY 21.  Families can provide additional comments during the survey and parents noted, “the doctor was super patient and calming, she explained everything very well” and another parent commented, “The best doctors, nurses and staff around.” Families also took the opportunity to highlight the exceptional care of individual staff and providers by name.

 

Survey Questions	Percent Responding Yes
	FY21	FY22
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%	82.4%
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%	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%	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%	100%

 

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

 

OCSHCN staff continued with their established activities, which included face to face planning discussions 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.

 

In FY22, F2F HIC worked with 828 families to provide information and resources to families who were planning to or currently were providing care through guardianship placement of a youth. F2F HIC assisted in answering questions about the process of guardianship placement and information 19 different topics including transitions to adult services of young adults in guardianship care such as, apply for SSI, finding adult providers, access to higher education or vocational training, establishing a special needs trust, relationships/socialization, independent living, and getting involved in the community.

 

F2F HIC began the process of revising the F2F HIC Transition Booklet for youth beginning at age 13 to begin preparing for transition to adulthood. The booklet will include topics on transitioning from high school to the adult world, the differences between adult and child services, managing money, independent living, transportation I.e., the process of applying for a driver's license or accessing public transportation. Resources and worksheets will also be included such as, a worksheet of listing strengths, a list of contact information for medical providers, medications including dosage and how often medications are taken, how to set up a doctor's appointment, a tip sheet on what to do in an emergency, and information on internet safety that includes a listing of 18 apps that are dangerous. The goal is for the new booklet to be completed and distributed   once published.

 

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, a collection of information that begins when the patient began visiting OCSHCN clinics with information on diagnosis, medications, services provided to assist in transition to adult healthcare.

 

The OCSHCN transition administrator conducts regular follow-up calls to aged-out youth. Of the 12 patients/families reached in FY22, 11 of 12 responded they had an adult health care provider.  The patient that had not yet established care with an adult provider stated that she did not currently have a doctor but knew how to establish care with a doctor and was encouraged by the transition administrator to contact OCSHCN if she needed additional assistance in establishing care with an adult provider.  OCSHCN and F2F HIC staff provided information via phone discussions, email, mail, fact sheets, and guides to youth transitioning to an adult provider and those aging 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

 

OCSHCN and F2F HIC staff attended meetings and reached individuals virtually and in-person. 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. F2F HIC staff have developed extensive relationships with school special education 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.