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

 

KY’s Office for Children with Special Health Care Needs (OCSHCN) has leveraged technical assistance resources to strengthen and better integrate the overall system of care for CYSHCN. KY’s participation in the Learning Collaborative to Improve Quality and Access to Care in a prior reporting period resulted in a case study developed and published by Altarum during this reporting period.

 

In an effort to locate children with special health care needs in KY who were not receiving services, OCSHCN developed a memorandum of understanding with the KY Birth Surveillance Registry (KBSR). KBSR, on a quarterly basis sent OCSHCN’s Intake and Eligibility Branch a listing of infants with diagnoses treatable in an OCSHCN clinic. Identifiable information was shared in order to refer infants to services. In addition, on a biannual basis, KBSR sent rates, trends, and geography of various conditions. This data was mapped (by a GSEP student) to determine gaps in services. In addition to the MOU, two staff from OCSHCN were part of the KBSR Strategic Planning workgroup in January of 2017 and January 2018. (The medical director and the assistant director of support services).

 

As noted in last year’s report, in 2017, OCSHCN worked with the National MCH Workforce Development Center to develop the approach to this project and assure readiness, using one-on-one intensive responsive technical assistance. This involved training of the core team and other stakeholders ensuring implementation planning and clear communication of the vision. The strategic plan was worked on throughout 2018 and finalized in 2019. OCSHCN has written administrative regulations pertaining to medical staff, initial application to clinical programs, and billing and fee structures. KY statute requires administrative agencies to promulgate regulations to set forth policies, and the agency filed several regulations in 2019, which were worked on throughout 2018. OCSHCN has several advisory committees, which have specific areas of interest in OCSHCN operations (e.g. Data, Early Hearing Detection and Intervention (EHDI), Youth Advisory Council (YAC), Parent Advisory Council (PAC). An area of need, which has been explored in some depth during past reports, is to accurately measure data beyond the provision of direct services.

 

While the revised NSCH will provide a backbone for annual block grant reporting, OCSHCN has revisited data collection efforts for the purposes of developing more accurate local and regional management information and to guide program evaluation and program planning and development. During the previous 5-year cycle, OCSHCN substituted consumer and agency generated data in place of national survey data, in order to measure year-to-year changes in progress or lack of progress toward indicators, and to connect results to programs. However, this approach suggests a clinical focus, and pertains to a subpopulation of the larger population of CYSHCN in KY. During the last reporting period a new survey was designed and deployed in OCSHCN clinics. The collecting of data continued throughout FY18 with over 745 surveys received.

 

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 showed that 73.6% of KY’s families successfully achieved Core Outcome #1. The nationwide figure was 70.3%, with KY ranking 17th among the 50 states and D.C. As discussed in the FY17 annual report, OCSHCN’s “comment card” initiative was discontinued after 6 years. It was replaced by a clinic survey using new to OCSHCN survey software. The comment card survey method found a 98% or higher rating on satisfaction and partnership, which was reported in the prior 5-year block grant cycle. The comment cards were given to one member of the patient’s family, typically the adult rather than the patient. The new survey asks questions which correspond to approximately 30 variables derived from the MCH 3.0 revised NSCH survey. The survey is given to a randomly selected 20% of the clinic population with each person surveyed only once. In fiscal year 2018, 747 surveys were completed. Analysis of the results is currently being conducted and OCSHCN plans are to report the analysis in the 2020 Needs Assessment. The survey analysis will yield important OCSHCN clinic level data to compare CYSHCN serviced at OCSHCN clinics with the wider NSCH surveyed population.

 

OCSHCN’s continuing challenge is to obtain meaningful stakeholder involvement at a policy level. OCSHCN staffs a Parent Advisory Council (PAC) and a Youth Advisory Council (YAC), which are avenues for family representation and participation. During this reporting period, a member of the PAC participated in OCSHCN strategic planning process. While none of the YAC members participated, all were invited. Ultimately, the goal is for families to be involved in the policies that affect them. OCSHCN encourages families to participate in any way they can, from working in the office, to being a Support Parent, to talking with families in the clinic, or being on an Advisory Council. OCSHCN believes that allowing families to participate, where they are comfortable, will provide them information and support to grow and to become involved in other areas.

 

The Title V investment in KY includes coordination with an administration of the F2F Information Centers program, a critical initiative addressing the needs to the CYSHCN population. OCSHCN social work staff and F2F staff/Support Parents also served as Certified Application Counselors for the state’s Health Benefits Exchange – part of a network of individuals trained to provide information and assistance with enrollment.

 

In FY18 F2F had 73 Support Parents through the state. The Support Parents talk with families about services and resources available to help them understand what services they might qualify for and how to access. To the extent possible, F2F matches families with a Support Parent who has a child with a similar diagnosis or needs. Support Parents are present during the Autism Spectrum Disorder (ASD) clinics (both OCSHCN based and community based) and at other OCSHCN clinics supporting families. Many times during what starts out as a casual conversation between the families and the support parent, the families reveal needs that they never thought to discuss with the Care Coordinator, Social Worker, or the Physician. Issues like the need for a stroller, a ramp or a lift; how health issues can be included on an Individual Education Plan (IEP); or reasons to have a 504 plan established for their child’s education. F2F continues to work with the PAC, YAC, and CoIIN and participates on the EHDI Advisory Board.

 

During the reporting period, F2F provided individualized assistance to nearly 1,000 families and over 350 professionals. Specifically, F2F has worked one on one with 480 families in Partnering in Decision Making. F2F has several outreach projects including participating in the Children with Medical Complexity Improvement and Innovation Network (CoIIN to Advance Care for CMC), to advance medical care for children with medical complexity, resource fairs, back to school events, Special Education Camps on IEP and 504 Plans, and made presentations at the annual conference of the Community Collaboration for Children. F2F has several other outreach projects that include the Special Needs Expo, Grandparents/Bounce, Incarcerated Family Members Support Group, Hispanic Support Group, and Family Wisdom Learning Collaborative.

 

F2F and OCSHCN staff often receives comments from families about the services they receive. Staff helps the families to address their concerns to the appropriate department or agency. MCH has a toll-free number, and OCSHCN also offers a comment line available for families. F2F staff assists in monitoring the comment line and works with families needing assistance.

 

F2F offers small stipends to trained Support Parents to attend trainings or conferences to expand their knowledge so they are better equipped to assist other families. F2F offers a lending library, with a wide array of materials, which families can access.

 

OCSHCN staff work in partnership to support families in making decisions about health care and individualized treatment. The nursing care coordination and multi-professional team approach continues onsite, and a Support Parent is present at offsite Muscular Dystrophy clinics in Louisville. Care coordinators also attend expanded Cerebral Palsy and Autism clinics, and care coordination and dietitians assist 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 FY18, 21% of those patients agreed to answer survey questions from the transition coordinator. An analysis of the survey results is in process.

 

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

According the 2017 National Survey of Children's Health, the percent of CYSHCN who have a medical home is 43.6% in KY compared to 43.3% 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 are linked with other efforts.

 

Case management services are offered to families who have children with an OCSHCN eligible diagnosis. The child does not have to be enrolled in OCSHCN’s clinical program 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. Among its services, F2F assisted 231 families toward the medical home outcome.

 

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

 

OCSHCN specialty clinics serve CYSHCN from ages 0-21 and at different developmental stages, however, the Early Hearing Detection and Intervention (EHDI) surveillance program reaches the entire population of newborns to ensure early screening and follow up for hearing. In addition, OCSHCN has initiated a developmental screening program available to any child in KY, birth to 5 years. 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 initiative. As always, OCSHCN staff and F2F assists families in gaining access to KY’s early intervention system and other programs which can help them with their child’s development (such as the KY Health Access Nurturing Development Services home visitation program).

 

KY Hospitals have maintained a high rate of 97% of infants screened for hearing loss prior to hospital discharge. The KY EHDI program is focusing on an initiative to assist birthing hospitals in scheduling infants who do not pass the screening for warranted follow up prior to their discharge. This approach has been proven to improve parent compliance and results in more timely diagnosis of hearing loss or normal hearing. All OCSHCN district offices offer audiology services, including diagnostic Auditory Brainstem Response (ABR). In addition, in order to ensure speed to service, three district offices have been 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. Our aim is to furnish two additional district offices with screening ABR equipment to further improve speed to diagnosis. In order to further reduce loss-to-follow up, the University of KY has partnered with the EHDI program and with the University of Louisville 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. 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 is collaborating with The Home of the Innocents to provide intervention services for those children. The needed services are being 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 provided 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 FS. In FY18, 1,232 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 was 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. 489 children were referred to this audiology program in FY18.

 

In the summer of 2016, the KY EHDI program launched annual surveys in an effort to gather input from stakeholder groups across the state. For example, surveys asked specifically about their role as provider or their experience as families and requested input on areas of improvement. This needs assessment has highlighted several overarching needs in EHDI in KY including the need for expanded representation on our advisory board by individuals serving families across the state and reducing challenges faced by families related to accessing information about hearing loss, identifying sources for follow up and accessing needed services. EHDI is partnering with Hands & Voices to host a family retreat for families with children ages 0 – 3 that have recently been diagnosed with hearing loss. The Care Project, a North Carolina organization, has selected KY as one of 3 states in 2019 for this retreat and all expenses for families are paid as part of that agreement. A Memorandum of Agreement was established with the KY Commission on Deaf and Hard of Hearing (KCDHH) to recruit “Communication Role Models.” These communication models are paired with a family of a newly identified infant in order to assist the families in exploring different communication options and to obtain information in order to select the best option for their family. A video was filmed in which each family described their journey through hearing loss and discussed their experiences with their chosen communication method(s). The video has been completed and is in the final stages of editing. In addition to the video, KCDHH has collaborated with OCSHCN and First Steps to implement 10 sessions of sign language classes across the state. Due to high demand, a second round of classes is being planned for 2019. In order to increase opportunities for children and families to engage in culturally sensitive recreational activities, the EHDI program is collaborating with the University of Louisville School of Audiology 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, with plans to expand statewide, provide screenings at special events, and create a database, all in the coming year. Part of OCSHCN early screening (early intervention) is the Zika protocol. KY Birth Surveillance Registry (KBSR) partnered with the Division of Epidemiology Reportable Disease Section and OCSHCN to develop a state plan to identify and enroll pregnant women who are Zika-positive in the USZPR and when the infant is born connect them to subspecialty and early intervention services. KBSR is notified at the time of birth, updates the USZPR and contacts the family to make referrals to OCSHCN for neurology clinic and other specialty services. The infant is evaluated by a neurologist and a pediatric audiologist and receives full hearing testing. The family also meets a Family to Family (F2F) representative. The infant returns to clinic at 2, 6, 12, and 24 months of age for a comprehensive physical exam with developmental surveillance and follow up on labs, imaging, hearing test results, early intervention, and ophthalmology referrals. If an abnormality is found on an exam or imaging screen, the infant has appropriate lab work and is referred to pediatric subspecialties. Zika has been added as an established risk for Early Intervention, categorically making exposed children eligible for First Steps.

 

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 planned or 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. During FY16, the first year of implementation, KY scored 81.3% (61/75 possible points). In FY17, KY set a goal of 90% and achieved 90.7% (68/75 possible points). In FY18, KY set a goal of 100% and achieved 94.6% (71/75 possible points). Elements that are fully implemented, many of which are continuous and ongoing in nature, include:

• Targeted outreach to educate providers and communities, including the KY chapter of the American Academy of Pediatrics executive committee
• Funding of a University of Louisville and a University of KY pediatric neurology resident
• Provision of hearing screening training to early intervention points of entry.
• Continuation of the provision of foster care support programs and expanding Medically Complex Foster Care support to include Fictive Kin and relative placement population with a plan to add two nurse consulted inspector (NCI) in FY19
• Funding of a social worker who assures transitions services to the contracted Hemophilia and Sickle Cell programs at the University of Louisville
• Successful replication of Louisville based non-English speaking support group in Lexington
• Improvement in clinic flow resulting in a decreased wait time for families
• Use of social media to alert families of CYSHCN to services, events, resources, etc.
• Increase number of specialty and telehealth clinics in rural areas improving access to care, such as iCare/ASD diagnostic, medical clinics, screening tool, and additional orthopedic telehealth clinic.

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, 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 continued 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 is being utilized. This feature is one that will benefit families, decrease no-shows, and free up staff time.

 

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. In Louisville, the otologists are arriving earlier and their start times tend to be more predictable. OCSHCN looks at ways to continue to improve. A comprehensive rubric looked as ways to better design scheduling, handle no-shows, and other factors which improve physician utilization. Residual wait time is sometimes unavoidable due to physician schedules, but staff do their best to communicate delays to patients when delays happen.

 

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 now 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 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.

 

Another underserved population, those with Limited English Proficiency, was served through the Una Mano Amiga (UMA) Spanish-speaking support groups (445 individuals attended during FY18, including 191 mothers in the Madres group and 98 parents in the Parents group. 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. See the link below for a news report on Maria Fernanda Nota, MD, who helped to initiate the support groups at La Casita. There is an English and Spanish version of the video. “CCSHCN” is mentioned in both. This was done in honor of Hispanic Heritage month, which was from September 15 – October 15, 2017. http://www.whas11.com/news/local/spanish-news/hispanic-heritage-maria-fernanda-nota-pediatrician-at-uofl-pediatrics-kosair-charity-center/480442019 .

 

 

A newer program, Un Abrazo Amigo (UAA) began serving CYSHCN families for Spanish speakers in the Lexington area in August 2016. Twelve adults attended the first meeting, at which topics included preparedness and availability of medical insurance and waiver programs. Participant evaluations were 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. During this reporting period, informational ads for the agency have been placed in community periodicals focused on children’s services and activities.

 

OCSHCN’s Facebook page had 1,892 “likes” and 1,955 “followers”, which for followers represents at 28% increase over FY17. 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 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

 

OCSHCN chose improving agency capacity as a priority during the previous 5-year cycle and embarked on an ambitious 13-point improvement plan designed with the assistance of national transitions resource center staff. The transitions program for CYSHCN was originally established in 1998, and has expanded from a small program to the point where transitions preparation is the rule and an established part of the array of services offered for direct services enrollees. During the last few years of the prior 5-year cycle, 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 as a result of the development of the plan of care template that includes transition elements as well as the inclusion of an emergency care plan within the portable medical summary.

 

KY’s 2009/10 NS-CSHCN score of 37.1% of youth 12-17 successfully achieving the transitions outcome trailed the national average of 40%. The 2016 NSCH scores KY at 13.6% as compared to the nation at 16.5%. The following scores were the results calculated for FY18 from OCSHCN clinic survey.

 

Survey Questions	Percent Responding Yes
Has your child's doctor or other health care provider (e.g. nurses or social workers) actively worked with your child to: Think about a plan for the future? (for example, discussing future plans about education, work, relationships, and development of independent living skills):	88%
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)	93%
Has your child's doctor or other health care provider (e.g. nurses or social workers) actively worked with your child to: Gain skills to manage your child's 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	90%
Has your child's doctor or other health care provider (e.g. nurses or social workers) actively worked with you or your child 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):	80%

 

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 years leading up to their aging out.

 

OCSHCN staff continue those activities which are established, including one on one planning discussions with families enrolled in OCSHCN programs – based on a transition readiness assessment checklist which documents what developmentally appropriate skills have been accomplished, are in progress or are a part of future expectations. During this reporting period, (Nov. 2017) two additional questions were added to the transition checklist based on Got Transitions information – “Understands the importance of organizing and keeping my medical records and receipts” and “Can explain to others how our family’s customs and beliefs might affect health care decisions and medical treatments”. KY’s program has continued quality assurance activities in the form of random chart audits statewide to ensure transition preparation services.

 

Transfer of care planning activities, begun as a pilot project through the D-70 State Implementation Grant, are now a part of statewide processes – outreach occurs to assist youths with the handoff to adult care. In all OCSHCN regions, adult health care providers have been identified who are willing to take CYSHCN into their adult practices. OCSHCN prepares preparation assurance and a portable medical summary, and assists with the transfer completion. The Transition Administrator conducts regular follow-up calls to aged-out youth – of 113 who have been contacted, 98% have successfully transitioned to adult health care providers.

 

Beyond the individual and clinical level, OCSHCN remains involved in the KY Interagency Transition Council for Persons with Disabilities. OCSHCN staff and F2F staff activities beyond OCSHCN walls include participation in regional school transition fairs (targeting both middle and high school students), providing education at conferences and school events, and sharing information with families and professionals. F2F staff outreach efforts included exhibiting at the Special Education Transition fairs throughout the state and presenting at the Conferences on Transition and working with “Dude Where’s My Transition Plan”. F2F staff received training on the KY Works and DB101 System allowing them to assist families of children/adults with special needs to understand if they go to work how much money they can make as they transition.

 

During this reporting period the KY F2F attended 244 events that impacted  an estimated 7,798 individuals.

 

KentuckyWorks is an employment partnership at the University of KY Human Development Institute that has set a goal of raising the employment rate of KY students with disabilities by 20% by 2022. In February 2017, KentuckyWorks held a Statewide Transition Summit and Community Conversation. Representatives from agencies across the state that KentuckyWorks identified as crucial players in the transition of high school students from school to employment were invited to attend the one-day kickoff event. A portion of the day was devoted to a Statewide Community Conversation, led by national transition expert Dr. Erik Carter of Vanderbilt, for the attendees as a state to discuss and identify what is working well, what we need to improve upon, and critical next steps to improve transition outcomes. Two OCSHCN staff members (Transition Administrator and the F2F HICs Co-Director for the Western half of the state) attended the Summit. At the end of the one-day Summit, KentuckyWorks staff thanked everyone for their input, and stated they would take the information provided by the attendees and would use that to help them in making plans to address needs of students with disabilities to improve the employment rate of students with disabilities. Recently, KentuckyWorks created Transition Training modules which were shared (March 2018) with OCSHCN managers as well as the Youth Advisory Council. As opportunities are made available, OCSHCN will continue to collaborate with the KentuckyWorks initiative.

 

OCSHCN’s Director of Clinic and Augmentative Services and the Transition Administrator were asked by Got Transition staff to present on the Got Transition webinar series about OCSHCN efforts to help patient’s transition to an adult provider. Transitions staff presented on the April 26, 2018 Got Transition webinar titled “Transfer to Adult Care”. During the reporting period OCSHCN transitions staff also presented at the KY Spina Bifida Association, the Pediatric Alliance, and spoke on KY’s transitions program as part of a Transition Panel at the National Academy for State Health Policy, NASHP Annual State Health Policy Conference in Jacksonville, Florida.

 

OCSHCN staff also presented at the February 2018 AMCHP conference as poster presentation PA26 titled “Incorporating Transition into Care Coordination Programs.” The presentation may be found at eventscribe.com/2018/AMCHP/SearchByPosterBucket.asp?bm=auto&f=PosterCustomField50.