In 2008, HRSA's Maternal and Child Health Bureau (MCHB), together with its partners, identified six core outcomes to promote the community-based system of services mandated for all children with special health care needs under Title V. These outcomes give us a concrete way to measure our progress in making family-centered care a reality and in putting in place the kind of systems all children with special health care needs deserve[1]. The six core outcomes are:

• Families of children and youth with special health care needs partner in decision making at all levels and are satisfied with the services they receive;
• Children and youth with special health care needs receive coordinated ongoing comprehensive care within a medical home;
• Families of CSHCN have adequate private and/or public insurance to pay for the services they need;
• Children are screened early and continuously for special health care needs;
• Community-based services for children and youth with special health care needs are organized so families can use them easily;
• Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.

 

For the 2021-2025 MCH Block Grant needs assessment reporting cycle, Maryland identified, “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” as a continued State Priority.

 

National priority measures and associated evidence-based strategy measures selected for programmatic focus to impact this overarching state priority were: 

 

• NPM 11: Medical Home

Percent of children with and without special health care needs, ages 0 through 17, who have a medical home

ESM 11.1: Number of CYSHCN who receive patient and family-centered care coordination services

 

• NPM 12: Transition

Percent of adolescents with and without special health care needs, ages 12 through 17, who received services to prepare for the transition to adult health care

ESM 12.1: Number of CYSHCN and their families who participate in health care transition planning activities

 

 

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.

 

Maryland recognizes that the medical home approach to providing comprehensive and high-quality primary care is the best practice for children with and without special health care needs. Despite the model’s introduction fifty years ago, limited progress has been made in universal implementation.

 

Health Care Transition

The National Survey for Children’s Health reported in their 2019-2020 data that 23.8% of adolescents age 12-17 with special health care needs received services necessary to make transitions to adult health care, compared to 15.8% of adolescents age 12-17 without special health care needs.

 

Maryland continued the overarching goal of increasing the percent of adolescents with and without special health care needs who have received the services necessary to make transitions to adult health care.

 

State Fiscal Year 2021

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:

• Children’s Medical Services
• Early Hearing Detection and Intervention
• Newborn Screening Follow-Up and Critical Congenital Heart Disease Surveillance
• Operations and Support
• Systems Development, which includes
  • Birth Defects Surveillance
  • Sickle Cell Disease Long-term Follow Up
  • CYSHCN Title V Block Grant Coordination
    • Grants to local health departments, community-based non profit organizations, and academic clinical centers
    • Internal projects

 

OGPSHCN served 17,380 CYSHCN and their families through Title V-supported programs and efforts in SFY2021. This figure reflects counts of unduplicated children and/or families served through direct health care services or enabling services.

In SFY2020 and SFY2021, OGPSHCN engaged in an intensive 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. Secondary to the COVID-19 pandemic, SFY2020 funding to local health departments and certain other grantees was extended through the first quarter of SFY2021. The final competitive RFA, “Strengthening Systems of Care for Maryland’s Children and Youth with Special Health Care Needs,” was posted in July 2020, with the first segment of the anticipated 3-year grant cycle being shortened to quarters 2, 3 and 4 (October 1, 2020 to June 30, 2021). These grant awards were eligible for continued funding for two subsequent years upon satisfactory completion of project objectives and at OGPSHCN’s discretion.

 

In their submissions, applicants were required to select at least one “focus area” corresponding to one of the core outcomes identified by HRSA as critical indicators of success in implementing community-based systems or services for CYSHCN (Table 1). Projects could incorporate elements of more than one focus area but were required to identify one as primary.

Table 1. Focus Areas from Maryland's CYSHCN Request for Applications

Focus Area	Corresponding Core Outcome
Family Professional Partnership	Families of CYSHCN partner in decision making at all levels and are satisfied with the services they receive.
Medical Home Implementation	CYSHCN receive coordinated ongoing comprehensive care within a medical home
Health Care Transition	YSHCN receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.
Workforce Development

 

 

The RFA also noted that while projects employing direct or indirect/enabling service provision would be considered, the driving force was the need for high-yield efforts that impact systems and translate into meaningful benefits for Maryland’s CYSHCN.

 

The RFA further stated:

 

The Federal Health Resources and Services Administration’s (HRSA’s) Title V Maternal and Child Health Services Block Grant Program (CFDA No. 93.994) provides funding to States to support infrastructure building for systems of care. The conceptual framework for maternal and child health services under the Title V Block Grant is envisioned as a pyramid with four tiers of services: Direct Services (top of pyramid), Enabling Services, Population-Based Services, and Infrastructure-Building Services (bottom of pyramid). 

 

Population-Based Services and Infrastructure-Building Services serve as the base of the pyramid and are the primary focus of this RFA. An overarching goal of all projects should be to build capacity and strengthen systems―capacity of families to manage and coordinate complex systems of care for their CYSHCN; capacity for youth to transition from pediatric to adult care and to live as independently as possible; and capacity of providers to provide comprehensive, coordinated, culturally effective, and consumer-friendly care.

 

During SFY2021, the budgeted amount for the CYSHCN grants was $1,101,811 compared to $1,174,605 in SFY2020. The reason for the decrease for these grants is to accommodate other CYSHCN initiatives including Child Medical Services and preventive and child health programming through the Child Health Improvement Systems.

 

OGPSHCN received and evaluated applications from community-based organizations, local health departments, and university centers. After the evaluation process was complete, a total of six grants were awarded for Quarters 2, 3 and 4 of SFY2021. 

 

Table 2. SFY2021 / Q2-4 OGPSHCN Grantees

Grantee	Focus Area(s)	Project Description
Children’s National Medical Center Parent | Navigator Program	Family Professional Partnership	Provide peer to peer support to families of Maryland children with special health care needs followed in the Goldberg Center for Community Pediatric Health and the Complex Care Program.   Build on existing community education programs at Children's National and develop targeted transition and educational programs for both community primary care pediatricians and staff and pediatric trainees through a partnership with Children's National clinically integrated network, the Pediatric Health Network (PHN)
National Alliance to Advance Adolescent Health	Healthcare Transition	Increase school mental health professional training in evidence-informed transition practices and replicate a new school mental health transition initiative modeled after Got Transition’s Six Core Elements of Health Care Transition.   Ensure expanded access to transition supports via school mental health programs
The Coordinating Center	Medical Home	Expand on the VIPhysicians&Kids pilot program, which received OGPSHCN funding in FY2020)   VIPhysicians&Kids is The Coordinating Center’s exclusive, medical home service for families with CYSHCN. Patients of pediatric practices enrolled in VIPhysicians&Kids have access to the VIPhysicians&Kids Care Team. The Care Team supports the development of a shared care plan that is centered on achieving personal goals. The Care Team supports practices so that providers can focus on medical treatment for their patients, and families can focus on parenting their children, while the Care Team works to resolve issues that impact the patient’s health.   The Center aims to increase the number of participating practices from two to five (with one focused on Sickle Cell), strengthen the family professional partnership, and develop strategies to become a scalable, replicable and sustainable model supported by practices, health care systems and third-party payers once the grant has ended.
Baltimore County Health Department	Family Professional Partnership	Improve family professional partnerships in Baltimore County by utilizing several strategies including: care coordination, education of families, needs assessments through focus groups, education through provider toolkits and expansion of emergency preparedness efforts for CYSHCN
Calvert County Health Department	Medical Home	Coordinate with the Calvert County Behavioral Health Services to provide a patient-centered behavioral health medical home to families of infants under two years old whose parents have a history of substance use disorder, severe mental health disorder and/or homelessness. Use an intensive case management model, with monthly contacts to families and twice monthly support meetings. Families will be directed to needed financial resources and workforce-development resources. Families will be taught the components of the medical home model so that they can develop a patient-centered medical home with adult and primary care providers. Appointment compliance will be monitored from the participating family member and the child’s well visits, and the child will be continuously screened for developmental and immunization delays. For other CYSHCN from birth to age 12 who are not currently being case managed by another source, resource assistance and case management will be provided as needed, including educating families in the benefits of a patient-centered medical home.
Talbot County Health Department	Medical Home, Family Professional Partnership, and Health Care Transition	Create a systematic approach for the transition of care coordination competencies to families of CYSHCN and the Medical Home. Regional systems approach focusing on addressing gaps and barriers will overlap to support these efforts

 

Additional FY21 / Q2-4 (not awarded as part of the aforementioned RFA) Grantees were:

 

The Arc Montgomery County: Supporting the Karasik Family Infant & Child Care Center, a fully inclusive childcare program for children 6 week to 10 years old with and without special health care needs and disabilities.

 

Clinical genetic centers: These awards provided continuous consultation support to OGPSHCN Newborn Screening Follow-Up Program and clinical care to Maryland children identified by newborn screening.

 

Children’s National Medical Center, Division of Genetics and Metabolism - To support operation of the Genetics and Newborn Screening Follow-up program.

 

Johns Hopkins University, McKusick-Nathans Institute of Genetic Medicine - To provide genetic services through The Johns Hopkins University Department of Genetic Medicine.

 

Kennedy Krieger Hospital-Biochemical Genetics Laboratory - To provide diagnostic and follow-up testing for metabolic disorders identified by the Maryland newborn screening program and for other metabolic conditions not identified by the newborn screening process.

 

University of Maryland, Baltimore - To provide diagnostic and long-term follow-up for CYSHCN identified by newborn screening.

 

OGPSHCN continued to monitor and review reporting requirements from all grantees to ensure fidelity to Department goals and grant agreement scopes of work, while also planning for future iterations of the request for applications to be posted and the work that needs to be done across the state.

 

In SFY2021, Maryland’s Title V Program continued to structure activities around the six core systems outcomes developed in 2008 by HRSA's Maternal and Child Health Bureau (MCHB) 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.

 

 

Family-Professional Partnership

 

During FY21, 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 1, 2019 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.

 

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 the June 2021 Family Voices Leadership Conference and multiple other webinars and workshops. In January 2021, the Maryland Maternal and Child Health Bureau (MCHB) initiated a series of “Bureau Month” trainings, including a session on Incorporating the Community Voice, and in February 2021, initiated the MCHB Equity Workgroup which includes staff representation from all Bureau Offices, including OGPSHCN.

 

As a parent of CYSHCN, the OGPSHCN Deputy Director was also once again 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 January 2021 through June 2021, 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 Epilepsy” for the Access Improvement and Management for Epilepsy through Telehealth ECHO for the AAP National Coordinating Center for Epilepsy.

 

The Deputy also participated in the AMHCP Family Engagement Community of Practice (CoP), the goal of which was to increase Title V capacity to engage families in their work. The CoP provided a platform to share ideas, innovations, lessons learned, successes, and best practices from subject matter experts. The CoP cohort explored topics including: Intersection of equity and family engagement; Challenges/barriers of availability of family members able to participate in training, public awareness, and policy development; Engaging/partnering with families without additional funding or increased funding levels for programs; and discussion on institutionalizing family engagement and reaching younger families.

 

In September 2020, the Deputy was invited to serve as an advisor and speaker for the Maryland “Launching Family and Youth Engagement” project from the Maryland Chapter of the American Academy of Pediatrics (MDAAP). The project was funded by a Family Engagement Chapter Grant from the The FamilY Partnerships Network. Over the course of several months, family engagement experts, including the OGPSHCN Deputy Director, presented at an Initial kickoff meeting, a MD AAP Board meeting and a general membership meeting to introduce strategies of family engagements, implementation and evaluation tools, and map next steps.

 

From December 2020 through March 2021, the Deputy participated in the Family Voices Telehealth CARES Act Community of Practice (CoP) in partnership with The Parents’ Place of Maryland (PPMD). PPMD is Maryland’s Parent Training and Information Center, Family-to-Family Health Information Center and Family Voices State Affiliate Organization. The purpose of the CoP was to share and discuss best practices around the delivery of telehealth including strategies for reaching families who are diverse, vulnerable, medically underserved and hard to reach.

 

During previous grant cycles, OGPSHCN provided funding to PPMD to provide one-on-one assistance and navigation services to families around the core outcomes of Medical Home and Health Care Transition. As part of this funding, PPMD 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. Using the national agenda for CSHCN and core outcomes as a starting point, the CoC worked to create systems of care that promote optimal health, functioning, and quality of life for Maryland CSHCN and their families. Membership in the CoC was open to anyone with an interest in improving the systems of care and family members were particularly encouraged to join. In FY20, there were three separate Community of Care Consortia (statewide, Southern Maryland, and Eastern Shore).

 

In FY2021, there was one Community of Care Consortia in the Eastern Shore and was supported by one of the region’s local health departments. State Title V staff had planned to coordinate a Statewide CoC but due to the pandemic and staffing transitions, it was unable to occur.

 

Additionally, several of the aforementioned SFY2021 grantees indicated Family Professional Partnership as a primary or secondary focus area. 

 

The Talbot County Health Department, which has coordinated the aforementioned Eastern Shore CoC for many years through funding from OGPSHCN, also planned a tiered approach to create a systematic transition of care coordination competencies to families of CYSHCN and the Medical Home. In response to the OGPSHCN request that proposed projects focus on Population-Based Services and Infrastructure-Building Services, Talbot County devised a plan to identify families with the highest need for intervention and implement a tiered system of family education. In SFY2021, Talbot LHD served 102 CYSHCN utilizing this tiered approach.   

 

Baltimore County Health Department proposed and implemented a project to improve family professional partnerships in Baltimore County by utilizing several strategies including: care coordination, education of families, needs assessments through focus groups, education through provider toolkits and expansion of emergency preparedness efforts for CYSHCN. This project served 84 CYSHCN in SFY2021.

 

Finally, the Parent Navigator Program at Children’s National Medical Center in Washington DC 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 SFY2021, Parent Navigators provided support and assistance to the families of 121 CYSHCN. The Parent Navigator Program was a previous grantee of OGPSHCN. In response to the RFA guidance to focus on building capacity and strengthening systems, the Program developed a proposal to build on existing community education programs and materials and develop targeted transition and educational programs for both community primary care pediatricians and staff and pediatric trainees through a partnership with Children's National clinically integrated network, the Pediatric Health Network (PHN)

Medical Home

In FY2021 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 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 to 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.

 

With OGPSHCN’s shift to the new RFA, increased competitiveness in the procurement process, and budget limitations not as many grants were awarded in FY21 as in previous years. Local Health Departments (LHDs) were particularly impacted by these changes. In FY20, OGPSHCN provided funding to CYSHCN programs in 13 of Maryland’s 24 LHDs; programs that 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 anticipation of SFY2021, LHDs and community-based non-profit  organizations (CBOs) were evaluated and awarded funds based on the same competitive RFA. Those that indicated Medical Home as a primary or secondary focus area include The Coordinating Center, Calvert County Health Department and Talbot County Health Department.

The Coordinating Center (TCC) expanded on the VIPhysicians&Kids pilot program (which received OGPSHCN funding in FY2020), an exclusive, medical home service for families with CYSHCN. Patients of pediatric practices enrolled in VIPhysicians&Kids have access to the VIPhysicians&Kids Care Team. The Care Team supports the development of a shared care plan that is centered on achieving personal goals. The Care Team supports practices so that providers can focus on medical treatment for their patients, and families can focus on parenting their children, while the Care Team works to resolve issues that impact the patient’s health. In SFY2021, the Center added three new practices, the Pediatric Sickle Cell Program at The Herman & Walter Samuelson Children's Hospital at Sinai Hospital, the University of Maryland Children’s Hospital Behavioral and Developmental Pediatrics Division, and Dundalk Pediatric Associates to the program, which served a total of 75 unduplicated CYSHCN.

Calvert County Local Health Department proposed an intensive case management model to provide a patient-centered behavioral health medical home to families of infants under two years old whose parents have a history of substance use disorder, severe mental health disorder and/or homelessness. Implementing this intensive model, the LHD provided case management services to the families of ten CYSHCN. Additionally, this LHD proposed resource assistance and case management on an as needed basis, including educating families in the benefits of a patient-centered medical home, for CYSHCN from birth to age 12 not currently being case managed by another source.

Through implementation of a triage system, Talbot County Local Health Department, proposed a tiered system of determining family/CYSHCN needs and providing care coordination services based on identified level of need, while beginning the process of educating and assisting families to manage care coordination independently. The Children with Special Health Care Needs (CSHCN) Screener© - developed by the Child and Adolescent Health Measurement Initiative (CAHMI) - was used to identify level of need. The CHSCN Screener© is a five item, parent survey-based tool by which children are identified on the basis of experiencing one or more current functional limitations or service use needs that are the direct result of an on-going physical, emotional, behavioral, developmental or other health condition. The county also made use of the KS-CYSHCN “Holistic Care Coordination[2]” model to assist families in navigating health care systems by first assessing individual needs, then tailoring support to meet those needs. A portion of the funding to Talbot County LHD focuses on regional infrastructure building, regional consultations and special projects, including support for the aforementioned Eastern Shore CoC. For FY 21, a total of 101 youth were served,

Not funded as part of the ‘Strengthening Systems of Care for Maryland’s Children and Youth with Special Health Care Needs’ RFA, but still supporting the Medical Home model:

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 27 families and provided 26 professional and cultural sensitivity staff development training for the staff. They provided services to 31 (unduplicated) CYSHCN youth.

 

While other grantees did not specify Medical Home as a primary area of focus, arguably all grantees are working toward components of the Medical Home model.

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 SFY2021,175 families were served through the Parent Navigator and Complex Care Programs, and 311 individual CYSHCN received care coordination services.

 

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, in furtherance of medical home concepts, 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 FY 2021, 6,174 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 FY2021, the CMS Program processed 265 applications, determined that 184 CYSHCN were eligible for services, and paid for services for 537 CYSHCN. Relative to FY2020, these figures represent a 3.8 percent increase in applications, a 3.8 percent increase in eligible CYSHCN, and a 4.8 percent increase in CYSHCN served. In addition to the fee-for-service payment structure, the CMS Program also purchased health insurance for 41 of the 537 eligible children, which represented a 7.8 percent increase from FY20. 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 FY2021, no child was disenrolled from the CMS Program as a result of the Governor’s Executive Order extending eligibility during the COVID-19 Pandemic State of Emergency. Existing enrollees remained eligible until 30 days after termination of the State of Emergency. The state of emergency terminated on July 15, 2021, thus the eligibility extension ended on August 15, 2021. 

 

The CMS Program is the costliest program within OGPSHCN, and SFY2021 proved true to that rule. Extended eligibility secondary to the COVID-19 Pandemic State of Emergency resulted in the highest number of children enrolled in CMS since its inception. The range of diagnoses enrolled children have results in variable treatment plans and medication costs, making it challenging to predict annual allocation amounts even when not in a state of emergency. The cost of one prescription for one child can conceivably deplete the entire budget. CMS, OGPSHCN and MCHB leadership engaged in several ‘brainstorming’ sessions in SFY2021 to discuss strategies for cost containment. OGPSHCN contacted The Catalyst Center to discuss opportunities for technical assistance or other support. Unfortunately, competing priorities stalled those conversations in SFY2021, but that is something we hope to pursue in the future. 

 

Early and Continuous Screening

 

Newborn Screening (NBS)

 

Newborn screening in Maryland is performed using a two-screen method.  The first being obtained at greater than 24 hours of age and after the infant has received 24 hours of feeding, and the second at 10-14 days of age.  To differentiate between a newborn and a subsequent specimen, the laboratory identifies all specimens collected at less than 7 days of age as a newborn specimen and specimens collected over 7 days of age as a subsequent specimen. 

 

In CY 2021, a total of 73,009 babies have been identified as having a specimen collected in the newborn period, identified as less than 7 days of age.  In previous reports, the number of refusal notifications have been used to identify babies who have not been screened.  However, secondary to a network security incident at the beginning of December 2021, this data is inaccessible at this time.  Additionally, the Maryland State Newborn Screening Laboratory has not been able to perform any of the newborn screening testing for Maryland babies since December 3, 2021.  Specimens received as of December 1, 2021, are being sent to an outside laboratory for evaluation and results are returned to Maryland. 

 

The total number of babies screened is higher than the total recorded births in Maryland which is most likely secondary to the potential overlap of specimens received between December 1st and December 3rd and the inability to filter the data received from the outside laboratory to exclude babies born to military facilities out of state and overseas.  Additionally, the outside laboratory is not currently linking multiple specimens from one baby together.  Although efforts have been made to verify each record is for a unique baby, there may still be some duplication in the babies screened in December 2021.

 

FY21 marks the completion of the first year and a half of the addition of DNA for cystic fibrosis (CF) to the newborn screen. Maryland has retained the two-screen process in screening for CF using an IRT/IRT/DNA model, 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 specimen received by the laboratory at 3 weeks of age to rescreen the IRT, 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.  Since the cut-off for IRT was reduced as well with implementation of DNA, the number of babies who had elevated IRTs on the first screen increased resulting in a substantial increase in the number of babies reported for follow-up for an initial IRT elevation.  This increase in the number of babies reported has been further exacerbated by the U.S. Postal service delays, which have resulted in repeat specimens not being received until 3.5-6 weeks of age.  The NBS Follow-up program is currently working with the NBS laboratory to determine the best timing for notification to reduce burden on the follow-up team and ultimately to eliminate undue anxiety on the part of the family.  More in depth data analysis and discussion with our pulmonology specialists is also needed to determine if the IRT cut-off needs to remain at 60 with the addition of DNA; the previous cut-off was 100, without DNA. 

 

In FY21, the multiplexed screening for the lysosomal storage disorders (LSD) consisting of Pompe, Mucopolysaccharidosis Type 1 (MPS-1) and Fabry Disease continues to identify a large number of pseudo deficiencies in both Pompe and MPS-I.  Further analysis of cut-offs related to final diagnosis is needed to further refine the screening process to reduce this false positive rate, particularly in the absence of second tier testing. 

 

The timeframe for 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.  Since screening for X-ALD cannot be multiplexed with any of the other disorders and requires purchase of dedicated equipment, this implementation has been delayed.  The NBS laboratory has initiated the procurement process for the equipment at this present time. 

 

The total number of babies requiring follow-up services for metabolic newborn screening in CY21 is 1993 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. Since teleworking during the COVID-19 pandemic proved to be a relatively seamless transition, the nurses are continuing to telework three days per week and working in the office two days per week to foster relationships with NBS laboratory staff. 

 

 

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 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 CY21, there were 64,859 reported births in the OZ database that are listed as eligible for CCHD screening, and 54,772 babies reported as being screened for CCHD.  The combined screening rate for the state is 84.5%.  This screening rate has decreased since the last reporting period, which was 92.1% in CY20.  A more extensive review of the data will be conducted to determine if the decrease is an overarching problem with the documentation of CCHD results into the database or a concentrated problem at a few birth facilities of the screened babies, 11 babies are documented as failing the CCHD screen, one of which has a critical congenital heart defect that was not suspected prenatally or clinically prior to screening.  The remainder of these babies had non-critical cardiac defects, delayed transition or pneumonia.  Of note, 21 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.

 

Review of the most recent CCHD data reveals that birth facilities may be over utilizing the category of Physician Override.  This category was created for babies who had an ECHO already performed secondary to findings on a prenatal ultrasound or for babies who require urgent attention clinically.  If the Physician Override category is chosen, the birth facility must choose a reason why the override is performed.  Of the 158 cases documented as Physician Override, 71 of these cases are identified as having no prenatal suspicion of a cardiac defect, with 34 cases documented as not having clinical symptoms either.  Education efforts with the birth facilities need to focus on documentation in general, as well as clearly defining the category of Physician Override.

 

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 FY21 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. FY20 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 FY21, there were 64,522 births reported to the Maryland EHDI OZ Systems database. 63,467 newborns were documented as screened.  Out of the newborns screened, 62,400 passed the newborn hearing screen; 1,346 infants missed or did not pass their inpatient screen; 95 were identified as deaf or hard of hearing and documented as referred to early intervention services; 441 infants (270 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 447 infants whose files are still open and unresolved as of this writing. CY20 LTF/D was 30.9% and the CY19 LTF/D was 27.12%.

Follow up for newborn hearing screening suffered greatly due to the COVID-19 pandemic. Clinics had limited appointment availability, parents did not want to expose themselves or their newborns, and staffing issues were prevalent. Many of these issues remain even now, but CY20 certainly saw what we hope was the pinnacle with many “non-essential” medical services being stopped or postponed during months of that year.

The MD EHDI program staff and MD EHDI Advisory Council board members obtained and shared input on how the pandemic 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.” Despite efforts from MD EHDI staff and stakeholders, CY20 showed an increase in LTF/D percentages; one which will be explored further going forward.

Birth Defects Reporting and Information Systems (BDRIS)

 

In FY21, 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 FY21, no training sessions were conducted for birthing facilities due to pandemic restrictions. Questions regarding OZ were handled on an individual basis. Hospital site visits normally are 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 FY21, 1,177 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.

 

 

OGPSHCN continued the regional liaison relationship with Talbot County Local Health Department on the Eastern Shore of Maryland in FY21. 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 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.

 

To further support collaboration amongst programs serving CYSHCN around the state, OGPSHCN conducted a Grantee Meeting in January 2021, inviting all awardees from the competitive RFA to participate in a sharing session allowing each to learn more about the others’ respective projects. Through this communication, OGPSHCN grantees can learn about additional resources and opportunities for collaboration. This is something OGPSHCN plans to pursue with more focus in the coming year.

 

Along the same goals of increasing opportunities for collaboration and resource knowledge, OGPSHCN also increased engagement with internal Department of Health partners. The Maryland Developmental Disabilities Administration (DDA) and the Center for Chronic Disease Prevention and Control (the Center) are both natural allies to the Office for Genetics and People with Special Health Care Needs. In FY21, OGPSHCN leadership and leadership from both DDA and the Center to explore partnership opportunities. This, too, is something OGPSHCN plans to pursue with more focus in the coming year.

 

 

Resource Line and Resource Locator

 

In FY21 there were a total of 26,728 visits to the OGPSHCN website with 2195 unique visits. Average time spent on the website was approximately 2 minutes.  In FY21, 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 was staffed by OGPSHCN’s Parent Resource Coordinator prior to their departure. After their departure, the “Systems Development” Program Chief took the lead on responding to calls for assistance. The Resource Locator is an online resource with over 1,100 listings. In FY21, the most requested topics were general resource information and questions regarding funding sources. Due to the network security incident that the Department experienced in December 2021, FY21 numbers for the Resource Locator are not available. Between July 1, 2019, and June 30, 2020, there were 5,125 unique visits to the Resource Locator. 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 our FY21 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 the families we serve.

 

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

 

Youth Transition to Adult Health Care

 

During FY21, 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.

In FY21, 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), 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.

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.

 

For the Strengthening Systems of Care for Maryland’s Children and Youth with Special Health Care Needs RFA, only one applicant selected Health Care Transition as a primary focus area.

 

The National Alliance to Advance Adolescent Health is a new grantee for OGPSHCN in SFY2021. The overall project goal for their grant Year 1 was to increase school mental health professional training in evidence-informed transition practices through a new school mental health transition initiative modeled after Got Transition’s structured approach called the Six Core Elements of Health Care Transition. This goal was accomplished by customizing and piloting mental health transition tools produced by The National Alliance to Advance Adolescent Health/Got Transition and the University of Maryland’s Prince George’s School Mental Health Initiative (PGSMHI) transition improvement team.

Workforce Development

 

In FY21 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.

 

Additionally, OGPSHCN has prioritized the professional development of existing staff. Through a structured calendar of meetings for all staff and selected staff groupings, along with an intentional increase in learning opportunities, OGPSHCN hopes to keep staff engaged and coordinated, and continue to build capacity to serve effectively.

 

 

 

 

 

[1] Core Outcomes: Key Measures of Performance

[2] Kansas Department of Health, Special Health Care Needs