III.E.2.c. (5) CSHCN Annual Report

 

KY’s Office for Children with Special Health Care Needs (OCSHCN) continues to leverage 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 ECHO program for OCSHCN’s ECHO autism program as well as from Boston Universities CoIIN program team for OCSHCN complex medical care program. Last year’s annual report noted the memorandum of understanding with KY Birth Surveillance Registry (KBSR) to identify CYSHCN in KY and OCSHCN continues to receive information from KBSR on a quarterly basis. This reporting has assisted in identifying a larger number of KY’s CYSHCN population.

 

In FY19 OCSHCN strategic plan ‘OCSHCN July 01, 2019 – June 30, 2021 Strategic Plan’ was presented to staff and posted on the OCSHCN intranet. Progress continues on the plan, although the current COVID-19 pandemic has slowed progress on many items. In FY19, OCSHCN produced its first report on its multiple year survey clinic survey and compared the results from those found on the National Survey of Children’s Health. Both the strategic plan and the clinic survey are provided additional materials in this report.

 

In FY19, OCSHCN proposed Kentucky Administrative Regulations (KAR) were approved by the general assembly and are now posted publically. The new KARs cover application to OCSHCN clinical programs, billing and fees, and medical staff. KARs that were no longer meaningful due to discontinued programs were also removed. Both actions added clarity to what is publicly known about OCSHCN processes, and will ensure consistency in application of policy.

 

OCSHCN has several advisory committees including the Youth Advisory Council (YAC) and the Parent Advisory Council (PAC). In FY19, both committees were asked to suggest organization to whom OCSHCN should send the 5-year needs assessment survey. Between the YAC and the PAC, 8 organization that were highly relevant to the needs assessment, and had not been thought of previously, were suggested. The survey was sent to each of those organizations.

 

In FY19, OCSHCN made significant progress on both our data action plan and our transitions services scorecard. Both documents are included as additional materials.

 

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

 

Data from the 2009/10 National Survey of Children’s Health (NSCH) showed that 73.6% of KY’s families successfully achieved Core Outcome #1. The nationwide figure was 70.3%, giving KY a rank of 17th nationally. As discussed in the FY17 annual report, after a 6 year run, OCSHCN discontinued its “comment card” initiative. Since FY17, a revised clinic survey using survey software has been used. As reported in the prior 5-year block grant cycle, the comment cards found a 98% or higher rating on satisfaction and partnership. The new survey asks 35 questions, most of which correspond to questions on the MCH 3.0 NSCH survey. A randomly selected 20% of the clinic population receives the survey, with each person surveyed only once. In FY19, 170 surveys were completed. A report on the FY18 survey data titled ‘OCSHCN Clinic Survey and National Survey of Children’s Health Data Report’ (OCSHCN Clinic Survey) is included in the supporting documents section of this report. The OCSHCN Clinic Survey compares CYSHCN served at OCSHCN clinics with the wider NSCH surveyed population.

 

A continuing challenge for OCSHCN is to obtain meaningful stakeholder involvement at a policy level. OCSHCN Parent Advisory Council (PAC) and a Youth Advisory Council (YAC) are avenues for family participation. The goal is for families to be involved in the policies that affect them. OCSHCN encourages families to participate by working with the F2F staff in the office, being a support parent, talking with families in the clinic, or being on the PAC or YAC. OCSHCN believes that by allowing families to participate, it will provide them with needed support and provide OCSHCN with valuable insights.

 

Support parents counsel families about available services and resources. Often when a family starts talking with a support parent, they 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 instate support parent may not be available. In those instances, OCSHCN/F2F staff contact other state parent to parent programs to find a suitable match. F2F has several trained support parents that serve on interest groups and committees. In FY19, F2F trained an additional 10 support parents, bringing the total number 124. Those include such organizations as the AAP Home Care 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. During this reporting period, F2F assisted families 3785 times and professionals 2779 times in the following ways.

 

F2F has also worked with 6063 families and 3499 professionals on navigating systems and accessing community services. F2F has 29 categories, which fall under the two categories (e.g. home care, respite care, social determinants of health, etc.).

 

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 supports a support group tailored to the Hispanic population (Crianza Con Carino), a care givers support group, and the Family Wisdom Learning Collaborative. F2F has worked with more than 222 grandparents through the caregivers support group, providing them the support they need to raise their grandchildren as an aging person.

 

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 surveys families to assess family satisfaction with F2F services. In FY19, the survey was input into a survey application. The results of which are provided in the additional documentation section of this report. F2F offers a lending library, with a wide array of materials that families can access. OCSHCN/F2F staff work in partnership with families to support their decisions making regarding health care and individualized treatments. The nursing care coordination and multi-professional team approach continues onsite, and support parents are present at 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 dietitian has 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. In FY19, 21% of those patients agreed to answer survey questions from the transition coordinator. An analysis of the survey results is provided in the additional documentation section of this report.

 

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

According the 2018 National Survey of Children's Health, the percent of CYSHCN age birth-17 who have a medical home is 50.0% in KY and 42.1% nationwide. 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.

Case management services are offered to families who have children with an OCSHCN eligible diagnosis. Enrollment in an OCSHCN’s clinical program is not required to receive case management. Through case management, 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 910 families toward the medical home outcome and 322 professionals in FY19.

MCHB Core Outcome #4: CSHCN 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 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 5 years. 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. Other programs discussed in this section include OCSHCN’s First Steps point of entry (POE), partnership with the KY Birth Surveillance Registry, and the Healthy Weight Plan initiative.

KY’s hospitals have maintained a high rate of 97% of infants screened for hearing loss prior to hospital discharge. The KY 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 FY18, in order to ensure timely service, three OCSHCN offices were provided with access to screening ABR equipment. In these offices, infants are scheduled for screening evaluations when indicated, to reduce the impact of false positive referrals from hospitals that do not provide outpatient rescreens. In FY19, one additional district office was furnished with screening ABR equipment to further improve speed to diagnosis.

To further reduce loss-to-follow up, the University of KY (UK) has partnered with OCSHCN’s Audiology Program 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 will assist families in the process of obtaining a diagnostic evaluation and enrolling in intervention services as needed. OCSHCN also collaborates UK’s College of Public Health on a Family Check Up research project. The project is 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 toddlers.

To address concerns that infants and toddlers diagnosed with minimal or unilateral hearing loss do not qualify for First Steps services, based on established risk criteria, EHDI collaborates with The Home of the Innocents to provide intervention services for those children. The needed services are provided through tele-health technology with an experienced teacher of the deaf and hard of hearing. The EHDI program expanded the Early Childhood Hearing Outreach (ECHO) in KY that distributed Otoacoustic Emissions (OAE) equipment to Part C (First Steps) point of entry staff and provides training in service delivery and EHDI reporting procedures. OCSHCN district offices receive direct referrals from First Steps for any child at risk of hearing loss who cannot be screened or who fails the screening provided by First Steps. In FY19, 1,403 children were seen at OCSHCN offices for hearing evaluations and follow up. OCSHCN staff in district offices have been tasked with providing staff training and, when warranted, hearing screening services at Head Start and Early Head Start programs throughout the state. To ensure proper follow up occurs; the audiology program policy at OCSHCN has been amended to allow 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. A total of 587 children were referred to this audiology program in FY19

OCSHCN partnered with Hands & Voices to host a retreat for families with children ages birth to 3 that have recently been diagnosed with hearing loss. In FY19, The Care Project, a North Carolina organization, selected KY as one of 3 states to participate in this family retreat. The expenses for 15 families to attend were paid as part of that agreement. An OCSHCN staff audiologist was appointed to the Board of Directors of the KY Chapter of Hands and Voices. In partnership with Hands and Voices, OCSHCN has sponsored 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 are need of the unique support provided by parent guides. 

Through a MOA with the KY Commission on Deaf and Hard of Hearing (KCDHH), OCSHCN recruit’s “Communication Role Models”, who are matched with a family of a newly identified infant. The goal is to assist families in exploring different communication options and to obtain information enabling them to select the best method. A video was created in which each family described their journey through hearing loss and discussed their experiences with their chosen communication method(s). KCDHH has collaborated with OCSHCN and First Steps to implement sessions of sign language classes across the state. In order to increase opportunities for children and families to engage in culturally sensitive recreational activities, the EHDI program collaborated with the University of Louisville’s (UofL) School of Audiology’s summer camp program. The camp serves deaf and hard of hearing children and their siblings.

OCSHCN continues to provide Autism Spectrum Disorder clinics, which it initiated in 2014. The clinics are open in areas of the state where services were not readily available in order to fill gaps in services. In 2018, nurses received training on administering the ASQ-3, and ASQ-SE and in FY18 screenings where conducted in two of OCSHCN regional clinics.  Additional methods of Autism screening are being reviewed including the M-CHAT-R with a follow-up interview as well as the RITA which is an observational based screening tool that includes communicative templates.

During the reporting period, OCSHCN continued to serve as a Part C Early Intervention Point of Entry for the 7- county area including Louisville, the state’s largest city. The point of entry 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. Over 250 referrals per month are being made to the point of entry, and over 2,300 children are being served.

The 2017 KY Health Issues Poll found that 91% of KY adults found that childhood obesity was a problem, with 56% identified it as a serious problem. Towards the goal of reducing obesity in the CYSHCN population, OCSHCN’s formal Healthy Weight Plan (developed and initiated during the prior needs assessment cycle, and incorporated into agency practice and operations) addresses prevention, identification/assessment, and intervention/treatment among the CYSHCN population – a group who often find 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, or families not accepting that overweight/obesity is a legitimate concern; families who are more concerned with their children’s special health care need(s) than they are about the risks of overweight 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 message with families, and promotes healthy eating and physical activity in the community. During the reporting period, OCSHCN staff continued participation in the 5-2-1-0 initiative for OCSHCN direct service enrollees and families. 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 leadership and early intervention system point of entry staff joined the Healthy Babies Louisville partnership, a collective of 25 organizations working to ensure that all babies born in Louisville Metro see their first birthday and beyond. Each organization is implementing practices and/or policies that impact women, men, children, and families across all stages of childbearing years. These evidence-based initiatives focus on making change at the individual, community, and policy levels with special attention on serving our neighbors with the greatest risk in underserved areas. This partnership continues to be developed.

MCHB Core Outcome #5: CSHCN 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 with regard to reaching those CYSHCN not enrolled in clinical services. KY’s plan is presented on the SPM Detail Sheet (Form 10-B), and the plan as scored is included for reference in the CYSHCN Attachment.

Elements that are fully implemented, many of which are continuous and ongoing in nature, include:

 

3. Decrease wait time by improving OCSHCN clinic flow

Targeted outreach to educate communities and providers about services provided through OCSHCN

6. Ensure insurance coverage as per strategies identified in SPM #5, such as serving as navigators and administering premium assistance programs

7. Education of pediatric residents regarding CYSHCN and maternal and child health in Kentucky

8. Funding of University of Louisville pediatric neurology resident

9. Increase university partnerships with providers to serve disciplines outside OCSHCN medical eligibility through hybrid clinic model

10. Continue provision of hearing screening training to First Steps early intervention points of entry

11. Continue to provide gap-filling and direct care services

12. Continued OCSHCN participation in health information exchange

13. In-service training to provide quality ASD services

14. Studying feasibility of increasing regional ASD assessment centers within OCSHCN offices

15. Partnering 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

16. Developing and implementing a transitions component to the Hemophilia & Sickle Cell programs, in addition to other transitions efforts in conjunction with NPM #12             

18. Replicating the Una Mano Amiga program (non-English speaking support group) outside of the Louisville area

19. Continuing efforts toward reducing “loss to follow-up” by referring those at risk to qualified audiology assessment centers

20. Continuing EHDI partnership initiative with Early Start and Head Start 

21. Administering F2F program to assist with navigation of services

22. Care coordination and enabling services such as social work, therapies, etc.

23. Use of social media to alert families of CYSHCN to services, events, resources, etc.

24. Implementation of mini-grant program to fund projects which develop comprehensive systems of care and support among health care and other child services

25. Provide ASD screening services for families and providers to increase availability of services statewide             

 

A directory of OCSHCN services is made available on the agency’s website and promoted on social media. This document details partnerships in addition to available gap-filling direct care services, and details which services are available in which geographic areas. Care coordination continued in and outside of specialty medical clinics. Over 46,000 services were provided to over 8,300 unduplicated patients during the reporting period. Registered nurses partner with the family to develop a care plan incorporating an assessment of patient and family needs, therapist evaluations, and physician recommendation. 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 ASD clinics and collaborative screenings, the waitlist for diagnostic and treatment has been shortened. As indicated on an individual basis, telemedicine follow-up may occur for these families (as with those enrolled in OCSHCN neurology clinics) -- an evidence-informed strategy improving access to care where there is a significant proximity to provider problem. OCSHCN uses a process – the 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 staff presented a workshop at the Spring 2016 AMCHP conference, entitled “Enhancing ASD Treatment Through Collaborative Partnerships: Co-Locating Medical Care With Behavioral Health.” This experiential presentation described innovative evidence based practices such as visual storyboard scheduling, shared family experience, clinic flow outcomes, and provided a tool kit for other states. The presentation was repeated at the KY System of Care Academy – sponsored by the Department of Behavioral Health and Developmental and Intellectual Disabilities – in June 2017. In June of 2018, OCSHCN was an exhibitor at the System of Care Academy. OCSHCN presented an overview of services and our population based approach to care at the Fall 2017 KY Rural Health Association annual Conference and the KY Primary care annual conference. 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 clinic 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, and 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 November 2016 through August 2019.

Following intentional changes designed to improve clinic flow (and the implementation of teleneurology), wait time complaints have been cut by over half since the beginning of the comment card system in 2010. OCSHCN has been using 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 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 two regions (Morehead and Elizabethtown), NICU graduate clinics through UK are planned in three (Hazard, Morehead, Somerset), and a University of Louisville (UofL) sponsored assessment for developmental disabilities clinic is within 4 regions in the state (Bowling Green, 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. 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 collaborates with the Department Community Based Services (DCBS) to offer clinical support for medically complex children from birth until discharge, adoption and or transitioning to adult care providers. OCSHCN currently has nine NCI’s who collectively provide services to all 120 KY counties to identify medical issues, provide individualize plans, family conferences, clinical education and anticipatory guidance as well as coordinating care with the child's primary care provider and referral to strategically placed specialty OCSHCN clinics throughout KY.

OCSHCN is committed to provide children and youth safe and nurturing foster homes that cultivate trust and stability and provide for their health needs as well as a service delivery system that supports access among our community's most vulnerable citizens, the children and youth who are medically complex and in foster care. Nurses stationed in child welfare offices and regional OCSHCN offices convene individual health planning meetings and reviews, as well as conducting monthly home visits to approximately 140 medically complex children placed in out of home care throughout the state. Annually, over 1,500 visits are conducted by OCSHCN. Medical consultation is also available on behalf of any child in or at risk of placement in the child welfare system (over 8,000) on an as-needed basis. OCSHCN also 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 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 Kentucky 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 chose.

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 Kentucky. This project was implemented in 2015 and continues today. OCSHCN has received seven (7) proposals. Four of the seven were accepted. OCSHCN funds an ABA therapist and a nurse 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 also provides SNAP funds the KIDS Center which is a pediatric therapy center in KY, ORCHID House a therapeutic day center for kids, and Easter Seals.

Another underserved population, those with Limited English Proficiency, is served through the Una Mano Amiga (UMA) Spanish-speaking support groups (543 individuals attended during FY19, including 237 adults and 306 children. 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.

A newer program, Un Abrazo Amigo (UAA) began serving CYSHCN families for Spanish speakers in the Lexington area in January 2017. Twelve adults attended the first meeting, at which topics included preparedness and availability of medical insurance and waiver programs. Participant evaluations are uniformly satisfied. Dr. Nota, who helped to initiate the support groups at La Casita, replicated the concept in Lexington, KY and initiated “Un Abrazo Amigo” (A Friendly Embrace) in January of 2017. She operated the group until locating a local physician to take over. Planning initiated with Janeth Ceballos Osorio, MD, who is with the UK General Pediatrics in August 2018. The first support group meeting under Dr. Ceballos’s guidance was in October 2018. Sessions continue each month.

Louisville Urban League deploys community health navigators who conduct in-home 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. Initiated in 2016, the program goes door-to-door and is completely free. 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.

As a strategy for improving access, OCSHCN provides education to both providers and the public on issue 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.

OCSHCN’s Facebook page has 1974 “likes” and 2042 “followers”. The agency posts 5 days each 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. F2F reaches many additional families through handouts, listserv postings, trainings, and the F2F Facebook page.

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

 

In the previous 5-year cycle, OCSHCN chose improving agency capacity as a priority. With the assistance of the National Transitions Resource Center, OCSHCN created a 13-point improvement plan for its transition services. Since the inception of OCSHCN’s transitions program in 1998, transitions services have expanded to become a fully integrated part of direct services. During the last few years, KY’s scores on the prior transitions NPM trended upwards, based on services provided in the areas of health care transition, as well as preparation for independence, education, and skills needed for a career. OCSHCN believes that the Got Transition Health Care Transition “Process Measurement Tool for Transitioning Youth to Adult Health Care Providers”, provides an appropriate scoring method to assess progress in implementing the Six Core Elements. In the first year of scoring, KY achieved a total score of 87.5%. The current reporting year’s activities resulted in a score of 94%. This increase occurred because of the development of the plan of care template, which includes transition elements, as well as the inclusion of an emergency care plan within the portable medical summary.

 

The 2017/18 NS-CSHCN of youth 12-17 successfully achieving the transitions outcome scored KY at 22.8% as compared to 18.9% nationally. The following scores were the results calculated for FY19 from OCSHCN’s clinic survey. The results are the percent of Yes to No and do not include blank or ‘Don’t Know’ responses.

 

It is important to note that the scores above are for the children and youth that have been seen in OCSHCN clinics when they are aging out. Most have been enrolled at OCSHCN for several years and have answered transitions questions (including about finding an adult healthcare provider) for several years leading up to their aging out.

 

OCSHCN/F2F 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.

 

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 59 patients/families called 24 responded. Out of the 24 who responded, 97% successfully transitioned to adult health care providers.

 

OCSHCN and F2F staff provided information via face to face discussions, 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 FY19, OCSHCN and F2F staff attended over 160 meetings and had an estimated outreach to approximately 5,700 individuals. Locations included middle schools and high schools, OCSHCN clinics, conferences, provider offices, and a variety of relevant special events. In addition to the individual and clinical level, OCSHCN also remains involved in the KY Interagency Transition Council for Persons with Disabilities.

 

In FY19, Kentucky’s Regional Interagency Transition Teams (RITT) began to regroup and reestablish members to participate from their areas. The RITT’s had been curtailed in FY18 due to staff turnover and other issues. OCSHCN staff participated in 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.

 

In FY19, OCSHCN/F2F staff assisted AMCHP with updating its transitions implementation toolkit, which addresses NPM 12. When AMCHP provided the updated toolkits in August of 2019, OCSHCN’s transitions document was included with the information. OCSHCN is proud of the progress that it has made and the level of transitions services it provides. OCSHCN/F2F staff is proud that our transitions document was included in the AMCHP toolkit.