The state of Maryland has identified the Priority Need CYSHCN as “ensuring optimal health and quality of life for all children and youth with special health care needs and their families by providing services within an effective system of care in alignment with the six core outcomes.”  

 

NPM 11: Percent of children with and without special health care needs, ages 0 through 17, who have a medical home: The National Survey for Children’s Health reported in their 2018-2019 data that 44.9% of children ages 0-17 with special health care needs have a medical home, compared to 46.4% of children ages 0-17 without special health care needs.

 

NPM 12 Percent of adolescents, with and without special health care needs, who received services necessary to make transitions to adult health care:  The National Survey for Children’s Health reported in their 2018-2019 data that 26.9% of adolescents ages 12-17 with special health care needs received services necessary to make transitions to adult health care, compared to 14.6% of adolescents ages 12-17 without special health care needs.

 

During SFY 2020 Maryland Title V continued to structure activities around the six core systems outcomes for CYSHCN including:

• Family-Professional Partnership
• Medical Home
• Adequate Insurance
• Early and Continuous Screening
• Easy-to-Use Services and Supports
• Youth Transition to Adult Health Care.

 

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 which administers birth defect surveillance, Long-term Sickle Cell Disease follow-up programs, and the Title V MCH Block Grant Programs to local health departments, community-based nonprofit organizations, and academic clinical centers
• Operations and Support

 

In SFY 2020, OGPSHCN served 17,380 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. Additionally, in SFY2020, OGPSHCN began efforts to incorporate workforce development activities into the grant process, in part, by 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 SFY 2020, 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 position was staffed from July to mid-December 2019. During that time the Parent Resource Coordinator, who is also a parent of YSHCN, served to help families find local and State resources for their child, and to provide education and training to families of CYSHCN. Upon her departure, OGPSHCN engaged in a thorough search to fill the Parent Resource Coordinator position, hindered by the fact that State guidelines do not allow targeted recruitment of specific groups (in this case, a parent/caregiver of a CYSHCN or a former CYSHCN). In the absence of a dedicated FPP “expert,” the Systems Development Program Chief, the Health Care Transition and Medical Home Coordinator and the OGPSHCN Deputy Director all participated in FPP efforts and in helping families find appropriate resources, while additional office staff also participated in various ventures pertaining to CYSHCN.

 

OGPSHCN staff hold administrative responsibility for the coordination of several state-wide advisory committees, including: the Advisory Council to the Maryland Early Hearing Detection and Intervention Program; the Advisory Council on Hereditary and Congenital Disorders; and Statewide Steering Committee on Services for Adults with Sickle Cell Disease. Each of these committees mandates some degree of membership from those with lived experience, either parents/caregivers, affected adults, or some combination thereof. In addition to staffing the aforementioned committees, OGPSHCN staff served as members of numerous advisory councils as the expert voice on CYSHCN, a person with lived experience, or in a clinical advisory role. Those committees include: Maryland Commission on Caregiving; Mortality Quality Review Committee, Maryland Developmental Disabilities Council, Youth Camp Advisory Council, Sinerge ( Northeast Sickle Cell Grant Collaborative) Advisory Board, ASH-CTN ( ASH RC Sickle Cell Disease Clinical Trials Network) Community Advisory Board, Disability Health Inclusion Program Advisory Committee, United Healthcare Community Advisory Council, Traumatic Brain Injury Advisory Board and Charting the Lifecourse Community of Practice Leadership Team. The Deputy Director of OGPSHCN, herself a parent of CYSHCN, also participated on a Policy Review Team with the State’s Developmental Disabilities Administration, a sister administration to the Prevention and Health Promotion Administration.

 

OGPSHCN staff are always striving to improve understanding of successful Family Professional Partnership and to discover and implement new best practices. To that end, staff members attended various professional development opportunities focused on FPP and family engagement, including “Peer Support Best Practices” presented by the Child Neurology Foundation, the 2020 “Family Engagement Convening,” sponsored by Family Voices, and multiple other webinars and workshops. Adjacent to serving on the Charting the Lifecourse Community of Practice Leadership Team, the Deputy Director also completed the Charting the LifeCourse Ambassadors series, becoming a Certified Charting the LifeCourse Ambassador.

 

As a parent of CYSHCN, the OGPSHCN Deputy Director was also invited by The American Academy of Pediatrics (AAP) to participate in the Managing Students with Seizures ECHO (Extension for Community Health Care Outcomes), a multi-cohort learning opportunity and forum for health care professionals to learn and improve access to quality healthcare for children and youth with epilepsy. The OGPSHCN Deputy Director served as the “parent voice” faculty from October 2019 through April 2020, working alongside and presenting to clinical professionals to ensure that the family voice was heard. Additionally, the Deputy Director presented on “ Supporting Families in Telehealth Visits” for the Access Improvement and Management of Epilepsy with Telehealth ECHO for the AAP National Coordinating Center for Epilepsy.

 

In SFY 2020, a large portion of FPP efforts still occurred 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 and a grantee of OGPSHCN through June 30, 2020. PPMD is Maryland’s Parent Training and Information Center, Family-to-Family Health Information Center and Family Voices State Affiliate Organization. OGPSHCN and PPMD worked closely to identify opportunities and plan activities aimed at supporting, informing, and empowering families and improving FPP across Maryland.

In SFY 2020, 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. It aided 565 unduplicated (1529 duplicated) families. Additionally, 964 unduplicated children received basic Care Coordination services and 1529 unduplicated families were provided 602 referrals to family resources. PPMD provided 218 workshops on education, advocacy, family/patient rights, guardianship and healthcare to parents and caregivers of CYSHCN. During the reporting period, 132 training sessions and presentations were also conducted to health care providers, including 56 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.  PPMD also coordinated 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. In SFY 2020, there were three separate Community of Care Consortia (statewide, Southern Maryland, and Eastern Shore).  The Southern Maryland and Eastern Shore COCs are supported through grant funding from OGPSHCN and coordinated by local health departments within the applicable geographic region.  All three Consortium of Care (COC) meetings are held quarterly with an average attendance of 30-40 participants, both in person and remote.

In addition to providing grant funding to PPMD in SFY 2020, OGPSHCN provided grant funding to the Parent Navigator Program at Children’s National Medical Center in Washington DC. 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.

In SFY 2020, OGPSHCN engaged in a focused review of the internal process for awarding grants. In conjunction with a greater focus on competitive procurement processes from Department leadership and an effort to maintain fidelity to MCH Block Grant Program goals, OGPSHCN leadership took a significant portion of the year to analyze and edit the Request for Applications (RFA) for Systems Development grants. This included multiple strategic planning meetings with staff at all levels, consultation with the Administration's Office of Procurement and countless drafts and revisions. While the final RFA was not ultimately posted until SFY 2021 and will be discussed in detail in the next narrative report, the bulk of the work in crafting the RFA took place in SFY 2020. In their narratives, applicants were required to propose projects ensuring that  family members would have a meaningful role in grant-funded activities.

Medical Home

In SFY 2020, 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.  The COVID-19 Pandemic greatly reduced the opportunities to attend in-person events, which so many outreach efforts are, but as sponsoring organizations shifted their events to the virtual environment, the MH Coordinator was also able to pivot this different style of outreach and engagement. 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, school health professionals and educational medical institutions.

 

OGPSHCN provided funding to CYSHCN programs in 13 of Maryland’s 24 Local Health Departments (LHDs). These programs utilized nurse care coordinators to provide care coordination services to CYSHCN in their respective jurisdictions in support of a Medical Home model of care.  In SFY 2020, a reported 893 (unduplicated) children received basic and/or complex care coordination and case management services from their local health department.

 

In addition to supporting LHDs, OGPSHCN provided funding to community based organizations  and academic institutions through the System Development grants. SFY 2020 Grantees who focused some or all of their project efforts on the medical home were Children’s National Medical Center; The Coordinating Center; Johns Hopkins University School of Medicine, Hematology Department; the Kinera Foundation; the Parents’ Place of Maryland; the University of Maryland Access for Special Kids (ASK) program; and the Arc Montgomery County Karasik Family, Infant & Child Care Center, a medical childcare program.

Children's National Medical Center supports the MH model 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 SFY 2020, 175 families were served through the Parent Navigator and Complex Care Programs, and 311 individual CYSHCN received care coordination services.

The Coordinating Center (TCC) developed and piloted the “Very Important Physicians and Kids” (“VIPhysicians&Kids”) program in SFY 2020; a new medical home model for CYSHCN. The project was created to address two focus areas:

1. Facilitation of children’s and youth’s access to a family-centered, comprehensive medical home; and,
2. Promotion of planning by youth, family, and provider for youth’s transition to adult health care and services using a health care transition (HCT) model (discussed below).

A goal of this program was to partner with pediatric practices to deliver care coordination services for CYSHCN and their families in a medical home model. Upon enrollment into the program, practices identified CYSHCN who could benefit from care coordination and linked families to VIPKids. The VIPKids program then aimed to address issues often overlooked due to time burden on the physician and/or family by establishing the VIPKids Care Management Line for targeted pediatric offices to respond to priority needs for the families and child/youth with special health care needs. The VIPKids care team assisted the CYSHCN and their families with the development of a person-centered, shared care plan to identify active issues and goals of the child/youth and family, track hospital encounters, and resources provided. This approach to the MH model allows providers to focus on medical care and parents to focus on parenting and is exactly the kind of innovative thinking that OGPSHCN strives to support.

Johns Hopkins University School of Medicine, Hematology Department supported CYSHCN with sickle cell disease (SCD) and with bleeding disorders through its “Improving Hematology Services for Children with Hereditary Hemoglobinopathies and Bleeding Disorders and their Families at the Johns Hopkins University School of Medicine and the State of Maryland” program. The program focused on the Medical Home model with the intent to provide, assess and improve comprehensive services to children with sickle cell disease (SCD) and bleeding disorders in the State of Maryland: improve services, based on previous needs assessments; and improve access to and quality of these comprehensive services in Maryland. They assessed the effectiveness of the Medical Home in SCD by providing surveillance of the provision of two essential services; A) immunization against encapsulated organism; and B) whether transcranial Doppler screening to prevent stroke is provided as part of the Medical Home. For Hemophilia, they assessed the effectiveness of the Medical Home by determining whether effective dental services are being provided, a key element of effective care of persons with bleeding disorders that is often lacking.

Kinera Foundation (Kinera) provided services through the Eastern Shore Regional Hub, an integrative, centralized, coordinated, and collaborative model of care for CYSHCN, located in the underserved Eastern Shore region of Maryland. In SFY 2020, Kinera Foundation focused efforts on the Medical home model, including community awareness, specialty care, and training. Kinera foundation increased the number of children and youth (including transitioning youth) receiving care coordination services throughout the Eastern Shore of Maryland in collaboration with partners providing services at the "Hub.” Kinera also utilized the existing “Kinera Connect”, a parent support group platform to connect families and providers, while informing and promoting the benefit of the Medical Home Model. In SFY 2020, 313 CYSHCN were served through the Kinera Foundation.

Parents’ Place of Maryland (PPMD) was discussed in detail specific to its work in Family Professional Partnership, but that was only a part of the larger goal of PPMD to promote optimal health for MD CYSHCN and their families and facilitate access to an effective health delivery system so that families are informed, supported, and empowered. Title V funding through OGPSHCN supported focus on the Medical Home within the three target areas of care coordination, family/professional partnerships, and provider and community awareness.

University of Maryland Access for Special Kids (ASK) program provided 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 provided support for families and assisted care providers in serving families; served as a bridge between families, primary care providers and specialists, and as a link to community resources; served as the primary point of contact for families and providers to optimize integration into school and specialized day care; and served as a single point of entry to the University of Maryland health system and pediatric specialists at the children's hospital.  In SFY 20, 150 children and families were served through the ASK program.

The Arc Montgomery County Karasik Family, Infant & Child Care Center (KFICCC) is a fully inclusive childcare program for children 6 weeks to 10 years old with and without special health care needs and disabilities. The program provides various services including childcare, special education, nursing, therapies, PreK, and family resources in a single location. KFICCC's medical home model provides services in four areas: 1) nursing care and monitoring; 2) developmental growth; 3) education; and 4) family support. They provided service support to 60 families and provided 15 professional and cultural sensitivity staff development training for the staff. They provided services to 60 (unduplicated) CYSHCN youth.

 

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 SFY 2020, 7,275 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 SFY 2020, the CMS Program processed 468 applications, determined that 459 CYSHCN were eligible for services, and paid for services for 431 CYSHCN. Relative to SFY 2019, these figures represent a 4.5 percent increase in applications, a 24.4 percent increase in eligible CYSHCN, and an 18.7 percent increase in CYSHCN served. In addition to the fee-for-service payment structure, the CMS Program also purchased health insurance for 38 of the 459 eligible children, which represented a 3 percent increase from SFY 2019. 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.

During the last 4 months of SFY 2020, no child was disenrolled from the CMS Program as a result of the Governor’s Executive Order extending eligibility for certain services during the COVID-19 Pandemic State of Emergency.

 

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. The number of refusals increased two-fold over the number of refusals in SFY 2019, with 15 refusals reported in SFY 2020. As in prior years, letters were sent to these families encouraging them to reconsider. Of these 15 babies, only 5 babies (33% of the documented refusals) received newborn screening after discharge from the birth facility. This percentage of babies receiving screening after discharge from the birth facility is lower than previous years. In SFY17-SFY 19, 59%, 65% and 71% of the refusals, respectively, had a repeat specimen collected at the primary care facility.  It is not known at this time why this percentage has decreased significantly in this period. Whether or not the COVID-19 pandemic has played a role in this decrease is speculative.  However, conversations with a few provider offices during this timeframe indicates there was some confusion about whether or not the laboratory was continuing to accept samples, particularly at the beginning of the pandemic. Monitoring the number of refusals and number of babies screened after discharge will continue to help determine if this is a consistent issue.

 

SFY 2020 completes the first year and a half of screening for Spinal Muscular Atrophy (SMA) in Maryland.  Implementation of screening for SMA has proven to be a seamless process within the NBS Follow-up Program. All 8 of the children identified through NBS for SMA in SFY 2020 were located quickly and established care with the appropriate referral center within just a day or two after the results of the newborn screen were available.  Additionally, the multiplexing of the testing with severe combined immunodeficiency (SCID) continues to alleviate the false positive SCID screens reported in prior years, particularly in subsequent screens. 

 

Since screening for SMA closely followed the implementation of screening for lysosomal storage disorders (LSD), SFY 2020 also marks completion of the first year and a half of screening for Pompe Disease, Mucopolysaccharidosis Type 1 (MPS-1) and Fabry Disease. The Maryland State Newborn Screening Laboratory adjusted cut-offs for the multiplexed LSD screen both in May and September of 2020, resulting in a lower number of false positives.  However, there are still a large number of babies with a pseudodeficiency in either Pompe or MPS-I being identified through the newborn screen. Second tier testing conducted at the newborn screening lab might help alleviate the need for diagnostic testing for these babies, however, developing and implementing second tier testing is not a viable option at this time given staff vacancies in the lab, particularly in supervisor and manager positions. 

 

In light of the vacancies in the lab, implementation of screening for X-Linked Adrenoleukodystrophy (X-ALD) remains unknown at this time.  X-ALD was approved in September 2016 for inclusion on the Maryland Newborn 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 and requires purchase of dedicated equipment. 

 

In SFY 2020, a success for the newborn screening program in Maryland was moving forward with the addition of DNA for cystic fibrosis (CF) to the newborn screen.  The two screen process for CF previously consisted of Immunoreactive trypsinogen testing (IRT/IRT) and recommended sweat testing after the second elevated IRT.  Maryland has moved to IRT/IRT/DNA, unless the initial IRT is over 200 which results in DNA being tested on the initial specimen.  The DNA panel usually performed on the second elevated IRT specimen consists of 60 mutations, determined through consultation with our pulmonology specialist to be the most common mutations in our population. Since Maryland has remained a two screen state, the NBS Follow-up program is notified of the initial elevated IRT result only if  DNA was tested and was positive or if a routine repeat specimen has not been received on the infant.  If there is no repeat at 3 weeks of age, the NBS Follow-up program is notified and then identifies and locates the infant in order to determine if a repeat specimen has been collected and may still be in transit to the lab or if a repeat specimen is still needed.  Implementation of DNA for CF began in June of 2020 and analysis of whether time to diagnosis and treatment for CF has been reduced will be conducted after the first full year of screening. 

 

The total number of babies requiring follow-up services for metabolic newborn screening remained high again in SFY 2020 at 2,323 babies. NBS short-term follow-up services are provided by staff consisting of the program chief and two full-time nurses.  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. 

 

Secondary to the COVID-19 pandemic, the program staff began teleworking in March of 2020.  The transition to teleworking was relatively seamless since the staff already had most of the equipment needed to telework secondary to being on call for weekends and holidays.  Staffing for the program was adversely affected in SFY 2020 by the retirement of a nurse who had been with the program for an extended period of time.  The retirement occurred in May of 2020, and a new nurse consultant was hired and on-boarded in August of 2020.  Remote training of the new nurse required some effort and re-thinking processes, but the remote training appears successful since the new nurse is fully functioning at this time. 

 

Critical Congenital Heart Disease (CCHD) Screening Program

OGPSHCN conducts surveillance for the Critical Congenital Heart Disease (CCHD) Screening Program.  The CCHD screening results and follow-up actions are completed prior to the baby’s discharge from the hospital and entered into the OZ Systems database by birth facilities.  The CCHD screening data is used to identify variations in hospital compliance and to determine final diagnosis for abnormal screens.  In SFY 2020, there were 65,279 reported births in the OZ database that are listed as eligible for CCHD screening, and 60,106 babies reported as being screened for CCHD.  The combined screening rate for the state is 92.1%.  The screening rate in SFY 2019 was 88.7%, indicating the screening rate has increased slightly since the last reporting period.   Of the screened babies, 4 babies were identified as having a critical congenital heart defect that was not suspected prenatally or clinically prior to screening.  Of note, 27 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 Hearing Detection and Intervention (EHDI) Program and Birth Defects Reporting and Information System Program, conducted to discuss CCHD screening and documentation in general with hospitals have been suspended secondary to restrictions related to COVID-19 pandemic.  However, based on review of the documentation in the database, it is evident that hospitals are continuing to miss documentation of CCHD results and/or outcomes of the follow-up evaluation. Remote educational opportunities need to be explored for CCHD screening in general and improved documentation within the database.   

Sickle Cell Disease Follow up Program

OGPSHCN’s 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 SFY 2020, 563 children were being followed in the program. In May 2015, a pilot parent mentor program was formed to assist 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 while most providers were aware of SCT potential health risks, the breadth of knowledge was limited. This lead OGPSHCN to explore opportunities to expand knowledge related to SCT among providers, parents of those affected, those affected, and the community at large. Legislation prompted the reconvening of the Statewide Steering Committee on Services for Adults with Sickle Cell Disease,” in which OGPSHCN plays a key role both in planning and implementation. SCT Follow-up opportunities are being discussed in the statewide Adult Sickle Cell Disease Steering Committee.

Early Hearing Detection and Intervention (EHDI)

The Maryland Early Hearing Detection and Intervention (EHDI) Program, housed within the OGPSHCN, provides surveillance, and follow up to ensure newborns and infants receive a newborn hearing screening and recommended follow up, including referral to early to intervention services, when appropriate. During SFY 2020, there were 67,059 births reported to the Maryland EHDI OZ Systems database. 66,205 newborns were documented as screened.  Out of the newborns screened, 65,044 passed the newborn hearing screen; 3,561 infants missed or did not pass their inpatient screen; 96 were identified as deaf or hard of hearing and documented as referred to early intervention services; 350 infants (284 of these are home births) have files that are closed as lost to follow up or lost to documentation (LTF/D), and there are currently an additional 280 infants whose files are still open and unresolved as of this writing. Follow up for CY20 infants continues until approximately January 2022 so final LTF/D stats are not yet available, but CY 2019 LTF/D is final and was 27.12%.  This is an increase from the 15.64%  rate from CY 2018.

A knowledge gap exists among physicians and early intervention providers regarding early hearing detection and intervention (EHDI) processes which contribute to delays in determining hearing status by 3 months of age and early intervention (EI) enrollment by 6 months of age. The Maryland EHDI program continues to nurture its partnership with the Maryland State Department of Education (MSDE) Part C Program and other stakeholders to improve EI enrollment rates. Efforts continue to increase the number of infants who are identified as deaf or hard of hearing (DHH) by 3 months of age and to increase the number of DHH infants who are enrolled in (EI) services by 6 months of age, to strengthen the capacity of the MD EHDI system to provide family support and to engage families with children who are DHH and to increase engagement of adults who are DHH throughout the EHDI system.

In SFY 2020, MD EHDI continued the development and implementation of a system of care to raise awareness of EHDI processes to help ensure infants receive appropriate and timely screening, diagnostic evaluation, and referral to and enrollment in EI services. Both an ad hoc advisory committee of diverse stakeholders and a learning community of physicians and related health care providers established previously 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 continued in SFY 2020. A parent partner program developed as part of the EHDI program also remained active. The parent partner program provided family navigation, outreach, and support to families of children identified as deaf or hard of hearing and exhibited an increase in the percentage of parents of deaf and hard of hearing children who engage with the MD EHDI system.

MD EHDI staff reviewed and analyzed current follow up protocols and drafted PDSA cycles to be implemented that are aimed at improving achievement of 1-3-6 guidelines. Impacts from the COVID-19 pandemic were assessed through a combination of approaches. The MD EHDI program staff and MD EHDI Advisory Council board members obtained and shared input on how the pandemic is affecting newborn hearing screening, follow up, and early intervention services. The information obtained allowed MD EHDI staff to better assist families and provide them with up-to-date information and realistic expectations as they navigate the EHDI process. In addition, in response to changes in the status of nonessential health care services in Maryland and inquiries received, the MD EHDI program developed a statement that was provided to birthing staff when necessary. In part, it states: “the newborn hearing screen is a critical step in identifying children who are deaf or hard of hearing. Birthing facilities should make every effort to complete a hearing screen on newborns prior to hospital discharge and to report those findings to MDH following the usual protocols. Hearing screens should be provided safely and consistent with available guidance to minimize the risk of exposure to COVID-19 and other pathogens.”

Birth Defects Reporting and Information Systems (BDRIS)

In SFY 2020, the BDRIS program continued to use the OZ Systems database to monitor birth defects. Birth facility training continued, using a virtual platform subsequent to the COVID-19 pandemic, to make sure staff and administrators were using the system appropriately and effectively, and to increase reporting compliance rates. In SFY 2020, 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 conducted in collaboration with the CCHD screening program chief and the EHDI Program audiologist to reinforce appropriate screening and reporting procedures. These site visits were also useful to obtain documentation of the protocols being used by birth facilities for CCHD screening. BDRIS program staff continued 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 also continued to send out letters and fact sheets to families with infants identified as having a birth defect. With the emergence of COVID-19, all birthing facilities in Maryland were updated on appropriate reporting. In SFY 2020, 1,087 babies were identified via the birth defects reporting system and linked to resources.

 

Easy to Use Services and Supports

The overarching mission of the OGPSHCN is to ensure a comprehensive, coordinated, culturally effective, and consumer-friendly system of care that meets the needs of Maryland's CYSHCN and their families. Having community-based services for CYSHCN organized so families can use them easily is integral to accomplishing this mission but implementing strategies to foster ease of use is significantly easier said than done. Services and supports for CYSHCN are complex and convoluted, made unnecessarily more so by regional differences and a lack of a centralized resource repository for families. Through both internal efforts and funding to community-based organizations and to local health departments, OGPSHCN seeks to ameliorate some of the challenges to accessing supports and services.

 

Kinera Foundation / Eastern Shore Regional Hub

To increase CYSHCN access to specialty care in SFY 2020, OGPSHCN provided grant funding to Kinera Foundation for the Eastern Shore Regional Hub. 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 receive an appropriate level of care in the region in which they reside. Multiple services are offered within one building to increase access to services for Eastern Shore families, reduce the cost of care, and improve the overall health of the family. The Hub provides Speech Therapy, Occupational Therapy, Psychology Services, Durable Medical Equipment Outfitting, Orthotics Outfitting, Assistive Technology, a 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 by provider. Medicaid clients are accepted, including those enrolled in Waiver Programs. The latter half of SFY 2020 presented significant obstacles to care with the emergence of COVID-19. Most activities had to be suspended or transitioned to a virtual format where applicable.

 

Local Health Departments / Regional Liaisons

OGPSHCN utilized regional liaisons and the Community of Care Consortium (COC) to identify and share information about community based services throughout the state.

 

Regional liaisons are employed by a local health department in a given region and provide support, education and mentoring to LHD nurses/care coordinators within their region. They are the designated local contact from OGPSHCN to regional stakeholders, including families, and  utilize regional partners to develop an ongoing system of information collection for the region, which can direct services by identifying gaps and unmet needs and assist in implementing 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 Maryland’s Eastern Shore engage in collaboration whereby nurse care coordinators receive mentoring, support, information, and guidance, and engage in activities focused on best practices for serving CYSHCN. This regional liaison partnership has been of benefit to the aforementioned Kinera Foundation Eastern Shore Regional Hub, and the regional liaison serves as the chair for the Regional Hub Advisory Committee to assist in ongoing project development.

 

A second regional liaison partnership was established in SFY 2017 when OGPSHCN partnered with the Calvert County Health Department to provide a regional liaison for the southern region of the state. This role is served by Calvert County’s Medical Home Coordinator. Again, the implementation of a regional liaison framework allows the three counties that make up the area identified as ‘Southern Maryland’ to engage in collaborative activities for training and to share information to foster easy to use services and supports for families.

 

Parents’ Place of Maryland and Local Health Departments / Community of Care Consortia

The state-side Maryland Community of Care Consortium for CYSHCN (COC) continued to provide a forum for learning, networking, and communication among various stakeholder groups. In SFY 2020, The Parents’ Place of Maryland requested OGPSHCN grant funding to coordinate and hold four COC meetings. During each COC meeting, local community projects and programs serving CYSHCN are presented and opportunities to collaborate are discussed. COC members also give feedback on all programmatic activities within OGPSHCN. Due to COVID-19, only three meetings of the state-wide COC were held in SFY 2020.

 

Modeled after the highly successful state-wide COC, both regional liaisons also developed and coordinated regional Community of Care Consortia in their respective areas. In SFY 2020 both the Eastern Shore COC and the Southern Maryland COC conducted quarterly meetings for their specific regions and facilitated community education and input into the OGPSHCN programs and resources. In the latter half of SFY 2020, all meetings were conducted virtually.

 

OGPSHCN Internal efforts

Resource Line and Resource Locator

In SFY 2020, the OGPSHCN Resource Line and Resource Locator continued to grow and serve as a valuable resource for accessing community-based services. The Resource Line is a live resource service that is staffed by OGPSHCN’s Parent Resource Coordinator, while the Resource Locator is an online resource with over 1,100 listings. In SFY 2020, the most requested topics were general resource information and questions regarding funding sources. There were 1234 unique visits to the Resource Locator between July 1, 2019, and June 30, 2020. Approximately 13.8% of users returned to the site after the initial visit. A majority of the users came from the United States (91%) with users from the Philippines, India, France, and Indonesia making up the remainder (9%). 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.

 

Internal Case Presentation and Training opportunities

In the SFY 2021 application, it was noted that OGPSHCN staff would continue to identify opportunities for cross-program integration between the Systems Development Program, which manages the grants, and OGPSHCN’s other programs, with a focus on how the Systems Development grant activities might act in synergy with other programs or expand the functional capacity of those programs to address specific programmatic needs that have a direct outcome on Maryland’s CYSHCN. In an effort to support cross-program collaboration and integration, a case presentation opportunity was added to routine senior staff meetings. OGPSHCN “Program Chiefs” meet monthly; time was allotted on each agenda and a case presentation form template was provided to each chief with a rotating schedule. The intent was and is to foster increased communication and collaboration between OGPSHCN programs and to share resources that could support families.

 

OGPSHCN also conducts bi-monthly “all-staff” meetings during which training opportunities have been implemented, some focused on Title V-specific topics (Block grant summary overview) and others focused more on office or state-specific topics (Quality improvement, Maryland’s legislative process), but all with the overarching goal of increasing staff knowledge of sister programs, familiarity with federal and state programs and requirements, and capacity to service Maryland’s CYSHCN

 

Policy Review Team

As previously mentioned under Family Professional Partnership, the Deputy Director of OGPSHCN, herself a parent of CYSHCN, also participated on a Policy Review Team with the Maryland Developmental Disabilities Administration (DDA), a sister administration to the Prevention and Health Promotion Administration. The Policy Review Team was an effort to make sure that the DDA was hearing directly from people with developmental disabilities, their families, and advocates, with the assigned tasks to review and provide input and feedback on draft DDA policies, procedures, and guidance.

Youth Transition to Adult Health Care

During FY20, OGPSHCN focused efforts on education and awareness, interagency partnerships, technical assistance, and systems development activities to increase the number of youths with special health care needs (YSHCN) that receive the services necessary to make a successful transition to adult health care. Due to the COVID-19 Pandemic beginning in March of 2020 many of the in person activities were canceled and/or switched to virtual which was a hindrance for some  health care transition activities and services.  Many of the programs funded by OGPSHCN created effective and supportive outreach initiatives that were very successful in keeping youth, families and partners engaged in health care transition initiatives.

 

Again, through both internal efforts and through funding to community-based organizations and to local health departments, OGPSHCN sought to increase the number of YSHCN that receive the services necessary to make a successful transition to adult health care.

 

OGPSHCN Internal efforts

In SFY 2020, 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, including the Maryland Department of Social Services - Foster Care Programs, the Specialized Health Needs Interagency Collaboration program (a collaborative partnership between the Kennedy Krieger Institute and the Maryland State Department of Education), the Medicaid Adult Dental Pilot Program, and United Health Care Community Advisory Board. The OGPSHCN Health Care Transition Coordinator also again served on the planning committee for the School Health Interdisciplinary Program (SHIP) conference, a project of the National Center for School Mental Health.

 

OGPSHCN provided both Medical Home and HCT trainings to University of Maryland School of Social Work, state Foster Care Transition Coordinators, Jewish Community Services, the Maryland Chapter of the Epilepsy Foundation, the state 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 continued utilizing partnerships and funding to engage adult primary care physicians in learning opportunities focused on HCT and support initiatives focused on increasing adult provider education.

 

In an effort to offset the challenges presented by COVID-19 and to keep parents/caregivers, youth, providers, support systems, and school health professionals engaged in health care transition training and educational activities, OGPSHCN Health Care Transition Coordinator updated the HCT-specific webpage with current content and developed a new online virtual presentation request form.

 

In SFY 2020, The Health Care Transition Coordinator participated in 14 health fairs reaching over 1500 participants. Two of the health fairs were virtual due to the pandemic.  She gave 11 presentations to a total of over 1,400 participants and attended several professional conferences, both online and in-person. She also participated on the Annual School Health Interdisciplinary Program(SHIP) Planning Committee. SHIP provides comprehensive training on coordinated school health. The conference focuses on topics vital to school professionals. Through her participation the OGPSHCN Health Care Transition Coordinator ensures that YSHCN are included in that conversation at every level.

 

Local Health Departments

In SFY 2020, OGPSHCN provided funding to several LHDs for provision of local HCT-related guidance to CYSHCN and their families and associated services. When the COVID-19 pandemic hit in March 2020, many of the local health department services and programs were halted. Once services were available in the virtual environment, there was an overwhelming demand for services. Providing secure virtual services has allowed for a greater reach of participants, however, virtual services and assessments are not without challenges, including inconsistent access to reliable technology, obtaining consents, language barriers, and more. Some services had to be postponed indefinitely as they could not be transitioned to the virtual environment successfully. 

Children’s National Medical Center - Complex Care and Parent Navigator Program: In addition to the Parent Navigator Program discussed under the Medical Home section, the Parent Navigator Transitioning Program pilot project focused on providing transition-related services and identifying appropriate adult providers for YSHCN. During FY20, 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. The Navigator Program provided navigation services to 311 children (175 families); resolved 702 patient issues; completed 116 surveys, 90 transition readiness assessments, and 4 family focused workshops (noted above). The Program assisted 75 youth in the transition from pediatric to adult care.

As many providers and medical facilities can relate, Children’s National had many challenges in the latter part of FY20 due to the COVID-19 Pandemic. The Parent Navigator Program immediately engaged families in coaching on how to connect using virtual platforms to facilitate their ability to access healthcare services through telemedicine. This proved to be very successful. Parent Navigators educated and connected over 200 families to new technology. These interactions were extremely helpful for the clinicians as well.

 

The Coordinating Center (TCC) developed the aforementioned “Very Important Physicians and Kids” (“VIPhysicians&Kids”) pilot program in FY20; a new medical home model for CYSHCN. The project was created to address two focus areas:

1. Facilitation of children’s and youth’s access to a family-centered, comprehensive medical home (discussed above); and,
2. Promotion of planning by youth, family, and provider for youth’s transition to adult health care and services using a health care transition (HCT) model.

VIPhysicians&Kids’ aim is to address gaps in care by establishing virtual medical homes for CYSHCN that integrate care coordination, shared care planning, and provider, youth, and family HCT education and readiness. With guidance from TCC’s Clinical Care Coordinators, youth received support and resources to identify adult primary and specialty providers as well as adult disability services. Upon the emergence of the COVID-19 pandemic, this program developed  new strategies to maintain communication with providers and families by collaborating with TCC’s Marketing and Communications Team to expand the content and use of the program’s web-page to include access to all program materials, including but not limited to, referral and enrollment forms. During SFY 2020, 13 providers were trained under this new project.

As part of the program, 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 SFY 2020, 209 client referrals were made in their 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.

 

The Johns Hopkins Transition Independence Network  (J-TraIN) project implemented a 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 the Johns Hopkins institution and across the state of Maryland. In SFY 2020, J-TraIN provided HCT training to 319 providers. J-Train held ten ECHO (Extension for Community Healthcare Outcomes) sessions for providers, totaling 45 participants. In SFY 2020, a total of 227 people were served in their clinics supported in part by OGPSHCN funding.  An annual Transition Symposium typically held in-person in the Spring was quickly converted to a virtual event.

Johns Hopkins University School of Medicine, Hematology Department supported CYSHCN with sickle cell disease (SCD) and with bleeding disorders through its “Improving Hematology Services for Children with Hereditary Hemoglobinopathies and Bleeding Disorders and their Families at the Johns Hopkins University School of Medicine and the State of Maryland” program. The program focused on Health Care Transition with the intent to assess the effectiveness of current efforts in transition of youths with SCD and bleeding to adult care using the Transition Readiness Assessment Questionnaire (TRAQ) survey instrument and Post-transition surveys and assess the effectiveness of community health workers as a means to improve transition in the SCD population. The project also provided transition plans to enhance interactions with primary providers, which also enhances the Medical Home (discussed above).

Parents’ Place of Maryland (PPMD) focused its efforts on Family/Professional Partnership within the Medical Home and Health Care Transition. The project provided one on one assistance, information, support, and training to families and their CYSHCN across the state. Specific to HCT, the Project focused on two Target Areas – Youth and Family Readiness and Community Education and Readiness. In SFY 2020, PPMD conducted 144 medical home trainings and 100 healthcare transition trainings and trained between both MH and HCT outcome areas 12,843 families and over 900 professionals.

Workforce Development

In addition to focused activities around the six core systems outcomes for CYSHCN, in SFY 2020 OGPSHCN continued the ongoing effort to incorporate workforce development activities into the office programs by accepting student interns from various colleges and universities within the state. These interns range from health education majors to nursing and public health majors, from both undergraduate and graduate level programs. The office is utilizing student interns to introduce concepts of public health, needs of the CYSHCN population, newborn screening, surveillance and follow up activities, as well as to enhance the work of the office.

 

In the past few years, OGPSHCN has hosted students from Morgan State University and Coppin State University - both HBCUs - and from the University of Maryland and Stevenson University. The interns have worked on various projects ranging from updating and developing health education materials, to developing discussion sessions, and assisting with programmatic work. Interns are welcomed to OGPSHCN through a “meet and greet '' style meeting with OGPSHCN leadership and any Program Chiefs and staff with whom they will be working directly. Upon the end of their internship, they are invited to present their work and what they have learned at an office-wide meeting specifically for this purpose.