The Office for Genetics and People with Special Health Care Needs (OGPSHCN) is MDH’s Children and Youth with Special Health Care Needs (CYSHCN) office. OGPSHCN is housed in the Prevention and Health Promotion Administration’s Maternal and Child Health Bureau and includes five programs: Early Hearing Detection and Intervention; Newborn Screening Follow-Up and Critical Congenital Heart Disease Screening; Children’s Medical Services; Systems Development; and an operations unit. The Systems Development program administers CYSHCN-focused grants using Title V MCH Block Grant Program funds to local health departments, community based non-profit organizations, and academic clinical centers. The activities of these Systems Development grants are discussed below. The Systems Development Program also houses birth defects surveillance and long-term sickle cell disease follow-up programs.

 

In Fiscal Year 2019 (FY19), OGPSHCN served 13,596 CYSHCN and their families through the above Title V supported programs and efforts. This figure reflects counts of unduplicated children and/or families served through direct health care services or enabling services. In FY19, OGPSHCN continued to structure activities around the six core systems outcomes for CYSHCN including Family-Professional Partnerships, Medical Home, Adequate Insurance, Early and Continuous Screening, Easy-to-Use Services and Supports, and Youth Transition to Adult Health Care. Additionally, in FY19, OGPSHCN began efforts to incorporate workforce development activities into the grant process. The office began utilizing student interns to introduce concepts of public health and needs of the CYSHCN population, as well as to enhance the work of the office.

 

Family-Professional Partnership

 

During FY19, OGPSHCN built upon previous efforts to enhance family engagement and family-professional partnership (FPP) by assessing internal programs and identifying opportunities for change. 

 

OGPSHCN’s Parent Resource Coordinator serves to help families find local and State resources for their child, and to provide education and training to families of CYSHCN. In FY19, the Parent Resource Coordinator assisted with three training sessions on the topics of finding resources and advocacy. These training sessions reached 100 families, providers, and community members. In addition, the Parent Resource Coordinator served on the Maryland Commission on Caregiving and the Disability Awareness & Support Committee.

 

A large portion of FPP efforts occur within the long-standing partnership between OGPSHCN and The Parents' Place of Maryland (PPMD). PPMD is a non-profit, family-directed and parent-staffed center serving parents of CYSHCN throughout the State. PPMD is Maryland’s Parent Training and Information Center, Family-to-Family Health Information Center and Family Voices State Affiliate Organization. OGPSHCN and PPMD work closely to identify opportunities and plan activities aimed at supporting, informing and empowering families and improving FPP across Maryland.

 

During FY19, OGPSHCN’s Parent Resource Coordinator assisted PPMD with planning and presentation at a full-day conference aimed at educating parents of CYSHCN on medical home and family professional partnership, within the context of care coordination. OGPHSCN also partnered with PPMD to facilitate family focus groups in different regions of the state to gather families’ input on barriers and successes to effective care coordination.

In FY19, Systems Development grant funding supported PPMD in providing one-on-one assistance and navigation services to families around the core outcomes of Medical Home and Health Care Transition. They aided 222 unduplicated (1527 duplicated) families. Additionally, 450 unduplicated children received basic Care Coordination services and 1155 unduplicated families were provided 1163 referrals to family resources. PPMD provided 84 workshops on education, advocacy, family/patient rights, guardianship and healthcare to parents and caregivers of CYSHN. During the reporting period, 75 training sessions and presentations were also conducted to health care providers, including 452 identified collaborative partners. PPMD’s monthly newsletter includes articles on education and health care best practices, specifically including information on health care transition, care coordination, and school accommodations for behavior and health-related concerns. The newsletter is emailed to over 4,000 families per month.  The OGPSHCN-funded Family as Faculty program engaged with 47 students from University of MD School of Medicine (residents and third year medical students) and the MCH LEARN Program at Kennedy Krieger Institute, involving 584 families (duplicated). Through home visits consisting of teams of 1 to 3 students engaging in conversation and learning from the family and from the child with a special health care need, families can tell their story, talk candidly about the special challenges they face and reflect openly and honestly on their experiences with health care professionals. Following the home visits, debrief sessions are conducted with the students to discuss major take-aways and lessons learned.  In FY19, 6 student debrief sessions were conducted.

PPMD also coordinates the statewide Maryland Community of Care Consortium (COC), a working group of diverse stakeholders, including families, providers, advocates, consumers, administrators, and professionals from the public and private service systems. The COC is dedicated to improving systems of care for children and their families in the state of Maryland. Using the national agenda for CSHCN and core outcomes as a starting point, the COC works to create systems of care that promote optimal health, functioning, and quality of life for Maryland CSHCN and their families.  Membership in the COC is open to anyone with an interest in improving the systems of care and family members are particularly encouraged to join. Currently, there are three separate Community of Care Consortia (statewide, Southern Maryland, and Eastern Shore).  All three Consortium of Care (COC) meetings are held quarterly with an average attendance of 30-40 participants, both in person and remote.

OGPSHCN funding priorities in FY19 included projects that addressed one or more areas under the Goals for a System of Care, including FPP. One of the highlighted programs supported by Systems Development grant funding is the Parent Navigator Program at Children’s National Medical Center. The Parent Navigator Program helps to reduce family stress by providing peer-to-peer support and connecting parents or caregivers to resources, assisting with care navigation, finding educational tools for parents and children, and providing emotional support so that managing a child’s healthcare journey is a little easier. The navigators are parents of CYSHCN and bring a unique perspective and understanding to every parent enrolled in the program.

 

Medical Home

In FY19, OGPSHCN continued to focus on expanding awareness of the medical home model through educating families, training providers and developing new partnerships around the state.  The Medical Home (MH) Coordinator conducted outreach efforts and dissemination of information across the state through workshop presentations at The University of Maryland and at Kennedy Krieger Institute, participation in planning and presenting at the state-wide School Health Interdisciplinary Program (SHIP) conference, and attendance at numerous community resource fairs and other outreach opportunities.  A total of 225 individuals were educated on Medical Home implementation within their respective roles.  In particular, the presentation at the SHIP conference educated school health staff on the Medical Home model, what a patient-centered MH looks like, and their role in coordination of care for CYSHCN.  The participation with SHIP conference planning and implementation exhibits a cohesiveness between multiple OGPSHCN-funded grantees and office staff, as it supports several priority focus areas. The MH Coordinator additionally provided technical assistance and resources in support of medical home implementation to local health departments and pediatric provider practices.

 

In FY18, OGPSHCN was selected to work with the National Maternal and Child Health Workforce Development Center as part of the Health Transformation Cohort Project. OGPSHCN selected improving care coordination for CYSHCN as their challenging or complex issue to address through the project. The project’s initial goals included conducting a statewide care coordination assessment; garnering stakeholder support; and creating a document that outlines specific standards of care and identifies tools that can be implemented uniformly across providers. The long term goal of this project was the establishment of a statewide model to be implemented and measured in ways that promote greater access to needed care. While the Project has terminated, OGPSHCN continues its efforts to promote access to coordinated care.

 

OGPSHCN provided funding to CYSHCN programs in 19 of Maryland’s 24 Local Health Departments (LHDs). These programs utilize nurse care coordinators to provide care coordination services to CYSHCN in their respective jurisdictions.  In FY19, a reported 2,827 children received basic and/or complex care coordination and case management services.

 

In addition to supporting Local Health Departments, OGPSHCN provides funding to private agencies and academic institutions through the System Development grants.  These grants have yielded a significant share of Maryland’s Title V CYSHCN program partnerships and collaborations.

Children's National Medical Center supports MH by providing integrated access to services and care coordination for Maryland’s CYSHCN through Parent Navigator and Complex Care Programs. The navigators provide peer-to-peer support for families and share knowledge and resources for families to effectively navigate their health care system. The Complex Care Program supports medical homes by bridging the gap between primary care providers and tertiary services. In FY19, 227 children and families were served through the Parent Navigator and Complex Care Programs.

The University of Maryland Access for Special Kids (ASK) program provides multidisciplinary care coordination for children with complex medical needs using a MH model approach. The goal of the program is to enhance the care of CYSHCN in their medical home at the University of Maryland health system, including community-based sites across the State. The multifaceted ASK program provides support for families and assists care providers in serving families; serves as a bridge between families, primary care providers and specialists, and as a link to community resources; serves as the primary point of contact for families and providers to optimize integration into school and specialized day care; and serves as a single point of entry to the University of Maryland health system and pediatric specialists at the children's hospital.  In FY19, 424 children and families were served through the ASK program.

 

OGPSHCN also continued to provide funding for clinical genetics services to the University of Maryland, Children’s National Medical Center, John Hopkins University, and the

Kennedy Krieger Institute Biochemical Genetics Laboratory. These genetics services are provided to reduce or prevent adverse outcomes from heritable conditions; provide opportunities for CYSHCN and their families to receive services necessary to manage genetic conditions; offer culturally-competent and family-oriented services; and increase the number of primary care, specialty care, and other related providers who are informed about genetic contributions to health and illness and able to apply of genetic information to improve the health of individuals and families in their care. In FY19, 7477 children and their families received clinical genetic services.

 

Adequate Health Insurance

OGPSHCN’s Children’s Medical Services (CMS) Program pays for specialty care for qualifying CYSHCN who are underinsured or uninsured and whose family income does not exceed 200% of the federal poverty level. In FY 2019, the CMS Program processed 448 applications, determined that 369 CYSHCN were eligible for services, and paid for services for 363 CYSHCN. Relative to FY18, these figures represent a 10.4 percent increase in applications, a 14.7 percent increase in eligible CYSHCN, and a 14 percent increase in CYSHCN served. In addition to the fee-for-service payment structure, the CMS Program also purchased health insurance for 39 of the 369 eligible children, which represented a 5.2 percent decrease from FY18. Insurance coverage was purchased for children with the costliest diagnoses so these children could receive health services that were more comprehensive than those covered by the CMS Program, such as general pediatric care, sick visits, emergency room visits and admissions, dental, vision and mental health services. The CMS Program covered the cost of health insurance premiums as well as costs of co-pays, co-insurance and deductibles. Additionally, there was one insurance-enrolled child enrolled in the Kaiser Permanente’s Community Health Access Program. For this child, the CMS Program paid for services not covered by the Community Health Access Program.

The open enrollment period for health insurance plans occurs over a limited period and represents the only time in which health insurance can be purchased for the upcoming year. Since enrollment into the CMS Program occurs throughout the year, the CMS Program continued to cover the cost of care and services for children deemed appropriate for purchase of health insurance plans but who could not be enrolled until the open enrollment period.

 

 

Early and Continuous Screening

 

Newborn Screening (NBS)

 

Maryland routinely performs two metabolic screens on infants that are born in the state.

Maryland’s screening rate has historically been greater than Maryland’s birth rate secondary to provider offices collecting a routine repeat specimen on all babies in their practice regardless of where the baby was born.  A measure of newborns who have not been screened is determined by monitoring refusals for newborn screening. Maryland has an informed dissent policy for newborn screening which requires birth facilities to notify the short-term follow-up unit of any families who refuse newborn screening within 24 hours of refusal.  In FY19, a reduced number of refusals were received over previous years.  A total of 7 babies were reported to short-term follow-up for parental refusal of newborn screening.  Letters were sent to these families encouraging them to reconsider. Of these 7 babies, 5 babies (71% of the parental refusals) received newborn screening after discharge from the birth facility. Only 2 babies are documented as not being screened for metabolic disorders.

 

FY19 marks the second full year of screening for severe combined immunodeficiency (SCID) in Maryland. In FY18, adjustments in cut-offs by the Maryland State Newborn Screening Laboratory, along with a committee of immunologists from University of Maryland, Johns Hopkins University, Georgetown University and Children’s National Medical Center reduced the number of false positives reported for SCID in FY19, particularly for the subsequent specimens.   However, despite these adjustments, a total of 131 babies required follow-up for abnormal SCID results in this reporting period with no confirmed cases. Screening for Spinal Muscular Atrophy (SMA) was implemented in May 2019 and involves multiplexing of testing with SCID.  As a result of this multiplexing, the false positive rate for SCID has dramatically decreased and appears at this time to be resolved.  

 

In addition to implementation of screening for SMA in FY19, Maryland began screening for three lysosomal disorders: Pompe Disease, Mucopolysaccharidosis Type 1 (MPS-1) and Fabry Disease.  Since all three of these lysosomal disorders can be screened in one methodology, screening began for all three on June 17, 2019.  Establishment of appropriate cut-offs for these disorders has been a priority with the Maryland State Newborn Screening Laboratory secondary to the large number of abnormal results reported in the first month of screening, creating a significant workload for both the NBS Follow-up team and the genetic centers providing diagnostic testing, as well as creating stress for families.  Adjustments to the cut-offs were made after the first month of screening with minimal reduction in abnormal results reported.  The laboratory is currently in the process of analyzing the first 6 months of data to further refine the cut-offs and reduce the number of false positives for the lysosomal disorders.  

 

In addition to the four new disorders implemented in FY19, X-Linked Adrenoleukodystrophy (X-ALD) was also approved for inclusion on the Maryland Newborn Screening panel.  The response from the Secretary received in September 2016 confirmed that X-ALD will be added to the screening panel when the laboratory has the financial and personnel resources necessary for implementation.  Screening for X-ALD cannot be multiplexed with any of the other new disorders so the laboratory does not have the resources necessary at this time for implementation of this disorder.  The timeframe for implementation is not known at the time this report is being written. 

 

The total number of babies requiring follow-up services for metabolic newborn screening remained high at 1842 in FY19.  Secondary to staff changes within the Office for Genetics and People with Special Health Care Needs, part-time support by other nurses within the office became increasingly difficult.  A third full-time nurse was hired for the short-term follow-up program for newborn screening in January 2019.  The nurses provide consultation with hospitals, primary care providers and specialists regarding results obtained through newborn metabolic screening, as well as reporting unsatisfactory specimens.  Cases are followed and updated until there is a confirmed diagnosis or final resolution of the case.  The team of nurses share 24/7 on-call responsibility, including weekends and holidays. 

 

Critical Congenital Heart Disease (CCHD) Screening Program

 

OGPSHCN provides Critical Congenital Heart Disease Screening surveillance to identify variations in hospital compliance and to determine final diagnosis for abnormal screens.  CCHD screening data is entered into the OZ Systems database by birth facilities. In FY 19, there were 66,922 reported births in the OZ database that are listed as eligible for CCHD screening and 59,014 babies reported as being screening for CCHD.  The combined screening rate for the state is 88.7%.  The screening rate in FY 18 was 92.2%, indicating the screening rate has dropped since last reporting period.   Of the screened babies, there were 19 babies reported as failing the CCHD screen.  Only 2 of these 19 babies was identified as having a critical congenital heart defect that was not suspected prenatally or clinically prior to screening.  Five babies were identified as having a non-critical cardiac malformation.  Three babies have no documentation in the system related to follow-up by the birth facility.  One of these babies was discharged without evidence of an ECHO.  Of note, 31 babies were documented as having a critical congenital heart defect identified either prenatally or clinically prior to screening indicating prenatal screening and postnatal assessment remains a vital part of identification of critical congenital heart defects.   Site visits, coordinated with the OGPSHCN Early Infant Hearing Detection and Intervention (EHDI) Program and Birth Defects Reporting and Information System Program, continued in FY 19 to discuss CCHD screening and documentation in general with hospitals.  However, based on this analysis, it is evident that hospitals are continuing to miss documentation of CCHD results and more targeted education remains necessary.  

Sickle Cell Disease Follow up Program

 

The Sickle Cell Disease Long-Term Follow up Program follows children diagnosed with sickle cell disease through age 18.  The program continues to focus on childhood preventive care standards and provide education and assistance through transition into adulthood. In FY 19, 593 children were being followed in the program. In May 2015, a pilot parent mentor program was formed to assist new parents of newborns with sickle cell disease. This program continues to grow and develop as new parent mentors are added. In November of 2018, the program conducted a survey of providers to determine awareness of and preparation to discuss Sickle Cell Trait (SCT) testing outcomes, via Newborn Screening, and health concerns with families. The outcome showed that most providers were aware of SCT potential health risks, the breadth of knowledge was limited. This leads us to explore opportunities to expand knowledge related to SCT among providers, parents of those affected, those affected, and the community at large.  

Early Hearing Detection and Intervention (EHDI)

 

The Maryland EHDI Program is housed in OGPSHCN and provides surveillance and follow up to ensure babies receive a newborn hearing screening and follow up, including referral to early to intervention services when appropriate. During FY19, there were 67,560 births reported to the Maryland EHDI OZ Systems database. 66,853 newborns were documented as screened.  Out of the newborns screened, 65,839 passed the newborn hearing screen.  2778 infants missed or did not pass their inpatient screen.  87 were identified as deaf or hard of hearing and documented as referred to Early Intervention services. 172 babies (all born in 2018) have files that are closed as LTF/D and there are currently an additional 277 (all born in 2019) with files still open and unresolved to date. Follow up for CY 2019 infants continues until approximately January 2021 so final LTF stats are not yet available, but CY 2018 LTF is final and was 15.64%.  This is an increase from the 12.22% rate from CY2017 when the program had additional follow up coordinators yet is still well under the program’s goal of less than 20%.

 

There is a knowledge gap among physicians and early intervention providers that contributes to delays in determining hearing status by 3 months of age and early intervention (EI) enrollment by 6 months of age. A system of care was developed to raise awareness of EHDI processes in Maryland which will, in turn, help ensure babies receive appropriate and timely services, including screening, diagnostic evaluation, and referral to and enrollment in EI services for babies identified as deaf or hard of hearing.

 

An advisory committee and a learning community of physicians and related health care providers were established to engage health care professionals, families, and other stakeholders in the guidance and implementation of project objectives and strategies, including engagement of medical homes and improvement of timely screening, diagnosis, and referral to early intervention services. A parent partner program (two parent partners hired) was developed to provide family navigation, outreach and support to families of children identified as deaf or hard of hearing. The program was also developed to increase the percentage of parents of deaf and hard of hearing children who have contact with Parent Partners and to increase the percentage of deaf and hard of hearing children who are enrolled into EI services in a timely manner.

Birth Defects Reporting and Information Systems (BDRIS)

 

In FY 2019, the BDRIS program continued to use the OZ Systems database for monitoring birth defects. Birth facility trainings were continued to make sure staff and administrators were using the system appropriately and effectively, and to increase reporting compliance rates. Since the system was relatively new, having been changed from a paper reporting process to web based in May 2013, the compliance rate for some institutions has been below expectations. These identified facilities continued to be targeted for training throughout FY19. For FY19, four training sessions were conducted for birthing facilities, as well as one presentation for the Pregnancy Risk Assessment Monitoring System (PRAMS) program. Hospital site visits were done in collaboration with the CCHD screening program chief and EHDI Program audiologist to reinforce appropriate screening and reporting procedures. These site visits were also used to obtain documentation of the protocols being used by birth facilities for CCHD screening. BDRIS continues to reach out to specialty clinics to encourage reporting of birth defects that are not diagnosed until an infant is discharged from the nursery. The program continued to send out letters and fact sheets to families with infants identified as having a birth defect. The fact sheets were updated during this past year and were reviewed by the Maryland Advisory Council on Hereditary and Congenital Disorders.  With the emergence of Zika virus, all birthing facilities in Maryland were updated on the appropriate reporting and follow up care for newborns identified via the Zika Pregnancy Registry (ZPR) and the Zika Birth Defects Registry (ZBDR). For FY 19, 1149 babies were identified via birth defects reporting system and linked to resources.

 

 

Easy to Use Services and Supports

 

Eastern Shore Regional Hub

 

To increase CYSHCN access to specialty care in FY19, OGPSHCN provided grant funding to Kinera Foundation and participated in planning for the Kinera Foundation’s Eastern Shore Regional Hub, which opened in July 2016. The Regional Hub was designed to offer specialty care services to CYSHCN and their families, and to function as a centralized, coordinated hub of patient- and family-centered care. The Regional Hub unites providers, therapists, families and supporting agencies to ensure CYSHCN on Maryland’s Eastern Shore receives an appropriate level of care in the region in which they reside. Multiple services are offered within one building to increases access to services for Eastern Shore families, reduce the cost of care, and improve the overall health of the family. During FY 19, OGPSHCN participated in various presentations and planning meetings to ensure adequate implementation. The Hub provides Speech Therapy, Occupational Therapy, Psychology Services, Durable Medical Equipment Outfitting, Orthotics Outfitting, Assistive Technology, Resource and Lending Library, Care Coordination, Collaborative Care, Parent/ Caregiver Support, is a Family Friendly Center, and includes a Sensory Quiet Room. Appointments are available six days a week, and appointment times vary per provider. Medicaid clients are accepted, including those enrolled in Waiver Programs.

 

Regional Liaisons

 

OGPSHCN utilizes the role of regional liaisons and the Community of Care Consortium (COC) to identify and share easy-to-use community based services throughout the state. Regional liaisons provide support, education and mentoring to LHD nurses/care coordinators within their region; are the designated local contact for the OGPSHCN to regional stakeholders, including families; utilize regional partners to develop an ongoing system of information collection for the region, which will direct services by identifying gaps and unmet needs; and and implement regional initiatives as determined by OGPSHCN.

 

The first regional liaison partnership was with Talbot County on the Eastern Shore of Maryland. This relationship, which includes a full-time nurse devoted to the role, has proven to be very beneficial. As a result of this unique partnership, all nine counties of the eastern shore participate in the Eastern Shore Maryland Consortium of Care quarterly meeting where nurse care coordinators receive mentoring, support, information and guidance, and engage in activities around best practices for serving CYSHCN. This regional liaison partnership has been of benefit to the Kinera Foundation’s Eastern Shore Regional Hub, and the regional liaison serves as the chair for the advisory committee to assist in the ongoing project development.

 

A second regional liaison partnership was established in FY 17. In particular, OGPSHCN partnered with the Calvert County Health Department to provide a regional liaison for the southern region of Maryland. This role is served by Calvert County’s Medical Home Coordinator.

 

For FY 19 both regional liaisons conducted quarterly meetings for their specific regions and facilitated community education and input into the OGPSHCN programs and resources.

 

Community of Care Consortium

 

The Maryland Community of Care Consortium for CYSHCN (COC) continues to serve as a catalyst to provide a forum for learning, networking, and communication among various stakeholder groups. In FY 19, The Parents’ Place of Maryland used Systems Development grant funding to coordinate and hold four COC meetings which were attended by an average of 50 stakeholders per meeting.  During each COC meeting, local community projects and programs serving CYSHCN are presented and opportunities to collaborate are discussed. COC members also gave feedback on all programmatic activities within OGPSHCN.

 

 

 

Resource Line and Resource Locator

 

In FY19, the OGPSHCN Resource Line and Resource Locator continued to grow and serve as valuable resources for accessing community-based services. The Resource Line is a live resource service that is staffed by OGPSHCN’s Parent Resource Coordinator, and the Resource Locator is an online resource with over 1,100 listings. In FY 19, the most requested topics were general resource information and questions regarding funding sources Utilization of the online Resource Locator continued to expand; while comparable data are not available for previous year, there were 1521 unique visits to the Resource Locator between July 1, 2018 and June 30, 2019. Approximately 7% of users returned to the site after the initial visit. A majority of the users came from the United States (80%) with users from the Philippines making up the remainder (20%). OGPSHCN promoted use of the Resource Line and Resource Locator through partners’ online listservs, newsletters and dissemination of fliers at local events. The Resource Locator is translatable into 50 languages and uses a language link translation service for those that choose to call in for assistance.

 

Youth Transition to Adult Health Care

 

During FY19, OGPSHCN focused efforts on education and awareness, interagency partnerships, technical assistance and systems development activities to increase the number of youth with special health care needs (YSHCN) that receive the services necessary to make a successful transition to adult health care.

In FY 19, The Health Care Transition Program (HCT) collaborated with other state agencies to incorporate HCT into program planning and increase overall education and awareness about HCT. Among many of the HCT Program Collaborations included Maryland DSS- Foster Care Programs, Specialized Health Needs Interagency Collaboration, Medicaid Adult Dental Pilot Program, and United Health Care Community Advisory Board. The Health Care Transition Coordinator also served on the School Health Interdisciplinary Program (SHIP) Planning Committee.

OGPSHCN provided Medical Home and HCT trainings to University of Maryland- School of Social Work Training Programs, Foster Care Transition Coordinators, Jewish Community Services, the Maryland Chapter of the Epilepsy Foundation Department of Juvenile Justice, Kennedy Krieger Institute clinical social workers and continued collaboration with school health nurses and school-based health teams through the Maryland State Department of Education (MSDE). OGPSHCN continues utilizing partnerships and funding to engage adult primary care physicians around HCT and support initiatives focused on increasing adult provider education.

During FY19, OGPSHCN’s HCT Coordinator updated the HCT-specific webpage with current content information and developed new fact sheets for parents/caregivers, youth, providers, support systems, and school health professionals.

 

The Medical Home/Health Care Transition Coordinator participated in 16 health fairs reaching out to over 3,075 people.  She gave 6 professional presentations totaling over 225 people. And attended 8 professional conferences; including professional webinars.

 

As HCT discussions progress and more information becomes available, OGPSHCN has become better equipped to provide resources and technical assistance to HCT initiatives across the State.  In FY19, OGPSHCN continued to provide funding to LHDs for provision of local HCT-related services. OGPSHCN also provided HCT-focused grant funding for the following projects:

 

The Johns Hopkins Transition Independence Network - J-TraIN:

This project implemented the customized evidence-based best practice model for HCT.  J-TraIN is a collaborative within the Johns Hopkins Health System that seeks to improve transition between pediatric and adult medicine for youth with special health care needs through direct patient care and provider and community education, both within Johns Hopkins institution and across the state of Maryland.  In FY19, they provided HCT training to 400 providers. J-Train held ten ECHO (Extension for Community Healthcare Outcomes) sessions for providers, totaling 45 participants. In FY19, a total of 157 people were served in their clinics provided under the Title V grant.

 

The Coordinating Center - Transition Connection Initiative: The Coordinating Center developed this initiative as a pilot project to improve HCT from pediatric to adult health care systems for YSHCN and their families. The pilot consisted of Rare and Expensive Case Management clients ages 12-25 with neurological disabilities, ventilator dependent, and residing in Baltimore City or Baltimore County. A strategy of this pilot project was to use a customized transition readiness tool to help youth identify their needs, create an individualized plan of care, and maximize their independence in all aspects of adult life. With the guidance of the Clinical Care Coordinators, the youth received support and resources for identifying adult primary and specialty providers as well as adult disability services. The Clinical Care Coordinators worked with the pediatric providers to confirm transition transfer information was complete and accurate for the new adult providers. The goal of this project was to connect YSHCN with adult providers inclined to care for this medically complex population. In FY19, 1617 REM clients received ongoing care coordination. The Coordinating Center has a Transition Connection Initiative Advisory Board that includes pediatricians, adult health care providers, youth, and family representatives to provide expert assistance with HCT best practices and performance.

 

Children’s National Medical Center - Complex Care and Parent Navigator Program: In addition to the Parent Navigator Program discussed under the Medical Home section above, the Parent Navigator Transitioning Program pilot project focuses on providing transition-related services and identifying appropriate adult providers. During FY19, The Parent Navigator Program facilitated four (4) transition training workshops for families; one at a Children’s National primary care site and the remaining three in partnership with the ARC of Prince George’s County. Training was provided to a total of 128 individuals.