The mission of the Bureau of Family Health (BFH) is to equally protect and equitably promote the health and well-being of pregnant people, their partners, their children, and all families in Pennsylvania (Pa.). Children with special health care needs (CSHCN) are children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and health-related services beyond those usually required. The BFH provides services for CSHCN that are family-centered, community based, and coordinated. According to the 2020-2021 National Survey of Children’s Health (NSCH), 22.7% (592,908) of children in Pa. have a special health care need, exceeding the national average of 19.5%. Of those CSHCN, only 18% report receiving care in a well-functioning system in Pa., a decrease from 20.5% in the 2019-2020 NSCH. Clearly, there is a significant need for evidence-based programming and services for this population.

 

The BFH provides services for CSHCN and their families, as well as initiatives to improve the system of care, through a combination of Title V, other federal, and state funding. 

 

Not only are CSHCN a priority within the Title V work carried out by the BFH, but more than five million dollars in state funding in 2022 was allocated to serve children with the following conditions: Cooley’s Anemia, cystic fibrosis, sickle cell disease (SCD), spina bifida, hemophilia, epilepsy, Tourette Syndrome, and services for children who are technology dependent. The BFH’s mission for CSHCN is to provide statewide leadership, in partnership with key stakeholders, to create systemic changes at the local, regional, and statewide levels to improve health and health related outcomes for individuals and families.

 

The Special Kids Network (SKN) helpline is housed within the BFH and answered by a program administrator. Funded by Title V, the SKN helpline provides information about resources and services and information on how to navigate different systems of care via telephone. Through the SKN helpline, the BFH helps families connect with community-based services and understand their organizations so that families can use them more easily. By doing so, the BFH aims to improve the percent of CSHCN who receive care in a well-functioning system. The SKN helpline is also used to receive referrals to the Community to Home (C2H) program.

 

The BFH collaborates with organizations serving CSHCN to advance Pa.’s system of care for CSHCN. The BFH utilizes partnerships such as the PEAL Center, Parent to Parent, and the C2H grantees, CareStar and Health Promotion Council, to assist in the promotion of the SKN helpline. The BFH and the grantees distributed information regarding the SKN helpline and participated in numerous in person outreach opportunities in 2022 to bring awareness to the helpline. In 2022, 429 calls were received through the helpline, an increase from the 396 received in 2021.

 

The Specialty Care Program (SCP) consists of 28 state-funded grants across 13 grantees (11 health systems, and two community organizations). The SCP targets individuals diagnosed with one of five conditions: Cooley’s Anemia, cystic fibrosis, hemophilia, sickle cell disease, and spina bifida. The SCP increased access to care, with the goal of improving client health outcomes by providing increased cross-system collaboration, mental health screenings, client engagement, and vocational planning. Identified barriers to care were consistent across conditions; examples include access to reliable transportation, gaps between insurance and services, coordination between care providers and other systems, and support to participate in community-based activities. In 2022, the SCP served 7,368 individuals from birth through age 21, and an additional 4,295 individuals aged 22 and older through matching state funds.

 

In 2022, the SCP continued the requirement that grantees dedicate a certain percentage of funds to a Client Assistance Fund (CAF), addressing critical barriers or needs that affect the client’s ability to adhere to treatment or impact the client’s quality of life. The CAF allows grantees to assist clients and their families by providing immediate assistance, long-term planning and solutions through the treatment plan, and care coordination to eliminate barriers. State matching funds support the Cooley’s Anemia, hemophilia, spina bifida, sickle cell clinics, and cystic fibrosis programs, and Title V funds support the sickle cell Community-Based Services and Support program.

 

The BFH also provided state matching funds to support outreach and education-based grants for Pa. residents diagnosed with epilepsy and Tourette Syndrome. Through the Epilepsy Foundation of Eastern Pa. and the Epilepsy Association of Western and Central Pa, the Epilepsy Program educated 1,370 first responders, 4,073 school employees, 2,068 secondary students, 87 family members/caregivers, and 958 community members in 2022. The program also raised awareness of epilepsy though online and in-person community outreach events and provided epilepsy resources and supports to people with epilepsy and their family members and caregivers.

 

The BFH works with the Pennsylvania Tourette Syndrome Alliance, Inc. (PA-TSA) to provide support and education to individuals affected by Tourette Syndrome (TS), their families and healthcare and other professionals. PA-TSA provides statewide support and community services to promote awareness and understanding of TS. PA-TSA provides in-person opportunities for families of children with TS to come together in-person to share experiences and network at a retreat and a summer camp.  PA-TSA also assisted the Tourette Association of America to create an urban outreach pilot program in Philadelphia because there are consistently fewer diagnoses of TS in urban areas. The aim is to increase awareness in urban areas by assisting providers to diagnose TS appropriately while also increasing the rate of those diagnosed with TS who seek treatment. If successful, the program will be rolled out to other cities around the country.

 

The Technology Assisted Children’s Home Program (TACHP) is funded through state funds that are used as part of the Title V match and helps the state achieve its goals to provide enabling services for CSHCN that are family-centered, community-based, and coordinated. The program provides for the coordination of care for technology dependent children 0-22 years of age. Technology-assisted refers to the use of a medical device, such as a feeding tube, catheter, EKG monitor, or ventilator, to compensate for the loss or diminished capacity of a vital body function. The program provides comprehensive non-medical services to families, as well as professional training for home health professionals and school nurses. Empowering families to become advocates for their children, collaborating with providers and insurance companies, engaging with other families, and moving toward self-sufficiency are emphasized. In 2022, TACHP was administered by the Health Promotion Council of Southeastern Pennsylvania, covering eastern and south-central Pa. In 2021, the vendor covering the western part of the state withdrew from TACHP. Since then, the Health Promotion Council has been fielding inquiries from families in the western part of the state. Maximum program capacity is 150 children, and as of the end of 2022, there were 67 children enrolled.

 

The BFH’s Head Injury Program (HIP), funded through state funds not part of the state match, provided rehabilitative and therapeutic services to individuals aged 18 and older with a Traumatic Brain Injury (TBI). Rehabilitation services are provided in a residential, outpatient or home and community-based setting. In 2022, the HIP added telerehabilitation as a permanent option for Cognitive Rehabilitation Therapy (CRT). CRT via telerehabilitation is offered in individual or group sessions. 

 

The Acquired Brain Injury Program (ABIP), funded by Title V, provided rehabilitative and therapeutic services for individuals between the ages of 18 and 25 with non-traumatic acquired brain injury. Services were provided in Pa. by specialized brain injury providers. Rehabilitation services are offered in an outpatient or home and community-based setting. In 2022, the ABIP served four individuals.

 

The BFH administered the TBI State Partnership Grant, funded by the Administration for Community Living (ACL) through July 31, 2026. The primary goal of this grant is to maximize the health, independence, and overall well-being of individuals with TBI in Pa. Through the grant, four focus areas were determined: Juvenile Justice, Older Adults, NeuroResource Facilitation, and Intersectionality of Intimate Partner Violence. The BFH in partnership with the grantee, Brain Injury Association of Pennsylvania (BIAPA), provided education, training, and technical assistance services to professionals working within the juvenile justice and older adult populations. Throughout Pa., four juvenile justice trainings were provided to 400 individuals and four older adult trainings were provided to 123 individuals. The BFH also partnered with BIAPA to implement the NeuroResource Facilitation Program (NRFP). This program assists individuals ages 18 and older with a TBI to identify service needs and address them by locating and coordinating appropriate resources. In March 2022, ACL awarded the Department supplemental funding to expand the public health work force. The primary focus of these funds is to expand the NeuroResource Facilitation Program to identify and address the service and support gaps caused by the COVID-19 pandemic. The Department and BIAPA conducted a focus group and identified the following gaps: social isolation, access to quality and timely healthcare, employment, compounding symptoms, and evidence-based and up to date COVID-19 information. The Department, through BIAPA, employed two additional NeuroResource Facilitators to assist with addressing these gaps. In May 2022, BFH received authorization from ACL to expand the NRFP to include individuals with a non-traumatic brain injury (nTBI). The NRFP served 78 participants statewide. The BFH, in partnership with the PA Coalition Against Domestic Violence, began the development of an education curriculum focused on the intersectionality of IPV and brain injury as well as a technical assistance toolkit for professionals working with those who have experienced IPV.

 

The County Municipal Health Departments (CMHDs), funded by Title V, offer a variety of services aimed toward CSHCN through home visiting programs. CMHDs use the evidence-based Ages and Stages Questionnaires (ASQ) developmental screening tool during home visits and make referrals to Early Intervention as necessary. The home visiting nurses encourage parents and caregivers to focus on stimulation activities and provide education on infant development.

 

The Chester County Health Department (CCHD) offers a home visiting program specifically for children assessed to be at-risk. At-risk children are defined as children with health issues such as low birth weight, prematurity, congenital conditions, failure to thrive, asthma, hearing deficiencies, metabolic conditions, or complicated medical issues. Additionally, a child may be identified as at-risk if certain maternal issues are present such as drug or alcohol dependence, Children and Youth involvement, mental health issues, children of adolescent mothers, or other issues that could lead to less-than-optimal development. In 2022, CCHD served 51 CSHCN and those at-risk for developmental delays through this program. 

 

The Philadelphia Department of Public Health (PDPH) offered mini-grant project opportunities to community organizations. All funded projects were procured through a Request for Proposals process, were under $3,000, and promoted trainings or collaboration to improve systems that serve CSHCN. Mini grants included the Sunshine Foundation which fulfills dreams and requests for CSHCN ages 3 to 18; equine therapy to help increase social and life skills and foster community while encouraging personal growth; a sibling support group for CSHCN and their siblings to promote social interaction, meaningful relationships with their siblings, and friendship; and home visits for families and children on the autism spectrum to engage families through the use of games and activities.

 

In 2022, the BFH continued its partnership with PDPH on an initiative to improve the systems in which CSHCN receive care, called the Family Impact Initiative (FII). In 2021, the BFH was awarded a $15,000 grant from the Association of Maternal and Child Health Programs (AMCHP) to replicate an evidence‑based program, Innovative Approaches (IA), a systems change initiative started in North Carolina. The overarching goal of IA is to support the development of community based and family-focused systems of care for families of CSHCN. The core components of IA include assembling an effective coalition of stakeholders, assessing community systems, identifying areas of improvement, developing and implementing strategies to address areas, building capacity to undergo systems change, improving the community service delivery system, and ensuring CSHCN get the support and resources needed to thrive. In 2021, the BFH, with the support of AMCHP and the North Carolina Department of Health and Human Services, worked with PDPH to build capacity to implement FII; several goals were accomplished that year and FII was fully implemented in 2022. Through Title V, PDPH was awarded $100,000 per year for three years to continue this initiative to address needs in the health care system with the goal of increasing the percentage of CYSHCN who receive care in a well-functioning system. In 2022, the advisory committee established goals and activities to address needs in education, transition, and health care.

 

Priority: Improve mental health, behavioral health and developmental outcomes for children and youth with and without special health care needs

 

NPM 11: Percent of children with and without special health care needs, ages 0 through 17, who have a medical home

 

Strategy: Prevention recommendations from Child Death Review (CDR) teams, including recommendations related to addressing trauma, will be regularly reviewed and implemented

 

By collaborating with Child Death Review (CDR) teams to review data related to trauma and fatality for CSHCN, and by implementing recommendations, the BFH aims to facilitate changes that will promote the safety and wellbeing of children, including CSHCN. Implementing safety and well-being measures will contribute to prevention of adverse health outcomes and mortality, an integral component of a well-functioning public health system for CSHCN and their families. By adopting recommendations that prevent or mitigate the effects of trauma, the BFH aims to improve CSHCN health outcomes over time.

 

Objective: Annually increase the number of recommendations from CDR teams related to preventing CSHCN death that are reviewed for feasibility and implemented each year

 

ESM: Number of recommendations from CDR teams that are implemented (CSHCN)

 

The mission of the Pa. CDR program is to promote the safety and wellbeing of children and reduce preventable child fatalities. Pa.’s CDR program continues to explore and pursue opportunities for supporting local teams in their work. The BFH recognizes the importance of evidence-based prevention strategies and the value of effective death reviews to inform those strategies. This program aims to better understand deaths among Pa.’s children and identify interventions designed to prevent future deaths.

 

The 2022 Child Death Review Annual Report examines child deaths that occurred in 2020. Of the total 801 reviewed deaths occurring in 2020, the medical conditions category represented 363 cases (45.3% of the total deaths reviewed) and 168 children who were determined to have a prior disability or chronic illness. Through obtaining information from annual recommendation reports and quality data from local CDR teams, the BFH examined findings of trauma-related deaths of CSHCN, and recommendations made for individual cases as well as systemic barriers identified at the local level. The BFH further reviewed information for feasibility to determine if there were any additional recommendations about how to utilize those findings to inform prevention strategies and programming within the Department and to support program implementation at the state or regional level. In 2022, no recommendations related to CSHCN were referred to Title V staff.

 

Priority: Improve the percent of children and youth with special health care needs who receive care in a well-functioning system

 

NPM 11: Percent of children with and without special health care needs, ages 0 through 17, who have a medical home

 

Strategy: Families are partners in decision making, and are satisfied with the services received

 

Family-centered care ensures that the organization and delivery of services, including health care, meet the emotional, social, and developmental needs of children; and that the strengths and priorities of their families are integrated into all aspects of the service system. Family-centered care recognizes that families are the ultimate decision-makers for their children, with children gradually taking on more of this responsibility as they mature.

 

Objective: Annually increase the number of person-centered plans developed with the BrainSTEPS teams by five percent each year

 

ESM: Number of person-centered plans developed by BrainSTEPS teams

 

The BFH, in partnership with Pennsylvania Department of Education and BIAPA, has implemented a brain injury school reentry program called BrainSTEPS (Strategies, Teaching Educators, Parents, and Students) since 2007. BrainSTEPS provides consultation services to any public-school student who has been identified as having an acquired brain injury. An acquired brain injury includes traumatic brain injuries of all severities and non-traumatic brain injuries. BrainSTEPS is comprised of over 230 brain injury educational consultants serving on regional teams. Teams are based in Pa.’s 29 educational Intermediate Units and two school districts. Once referred, the student receives services from the point of referral through secondary school graduation.

 

To ensure CSHCN receive care in a well-functioning system, BrainSTEPS coordinates and streamlines collaboration between students, their caregivers and the medical, rehabilitation, and education sector through the development and monitoring of person-‑centered care plans. Person-centered plans provide the student and their caregivers the ability to identify the student’s needs, barriers to having those needs met, and have an active role in the decision-making process. In 2022, the BFH exceeded the goal of 498 person-centered plans by providing 1,880 consultation hours to develop 654 person-centered plans for both students referred in the current year and those continuing to receive services who were initially referred in previous years. This was achieved primarily by promoting BrainSTEPS teams’ consistent use of a Brain Injury Supports Framework (BISF) Online Application tool to create person-centered plans. The BISF was created to guide BrainSTEPS team members, students, their caregivers, and their school team through determining appropriate academic supports, based on presenting signs and symptoms of the student’s brain injury. Once the tool is completed, it is embedded into the student’s person-centered care plan and disseminated to the student, their caregivers, and the school staff involved in the student’s case. BIAPA also provided training, workshops, and technical assistance to team members to support their ability to follow the established program model. Each year, BrainSTEPS Team Leaders are required to establish annual team objectives to promote person-centered thinking and planning for their coverage area. To ensure the BrainSTEPS Team Leaders are actively working on these objectives, a monthly meeting is held to discuss their progress and problem solve any service provision barriers.

 

In 2022, the BrainSTEPS program continued to participate in the CDC’s Systematic Evaluability Assessment of Return to School Programs following a TBI. The evaluation is assessing the BrainSTEPS program and its protocols to determine best practices for optimal student health and learning and will conclude in September 2025. The BrainSTEPS program also partnered with the Children’s Hospital of Philadelphia (CHOP) to apply for a research grant from the Centers for Disease Control and Prevention (CDC) to identify disparities in concussion outcomes in the pediatric population. In November 2022, CHOP was awarded a four-year grant, beginning in January 2023 and ending in December 2027. The study will use the BrainSTEPS database to analyze school re-entry data after concussion to improve education and access to concussion care.

 

Objective: Annually increase the number of families reporting through satisfaction surveys that they were partners in decision making through the Community to Home program by five percent

 

ESM: Number of families reporting satisfaction measures through surveys

 

The Community to Home (C2H) Program identifies and eliminates systemic issues for CSHCN in rural areas as CSHCN and their families face a variety of barriers to accessing services.

 

Through the evidence-based Community Health Worker (CHW) model, CHWs provide in-home care coordination and education within six rural regions of Pa., encompassing 48 of Pa.’s 67 counties. The target population includes rural, low-income families of CSHCN with a recent diagnosis or those who are at-risk of being diagnosed as well as CSHCN who have recently moved to or within Pa. Families from racial and ethnic minority groups are prioritized.

 

The goal of the C2H program is to provide CSHCN and their families with tools for self-sufficiency and connect them to appropriate resources. CHWs engage with families to assess their needs and develop individualized care management plans with measurable goals. CSHCN and their families are active members of the care management plan. The CHWs connect CSHCN and their families to appropriate supports and services to better address their needs and help families learn how to navigate the health and human services systems.  

 

Families are served using a short-term delivery process, and a needs assessment occurs during the initial home visit. The assessment results, along with input from the families, inform the development of a care management plan customized to meet the family’s needs. The care management plan consists of goals and steps needed for CHWs to assist families in navigating necessary systems. The CHWs provide information and referrals to connect CSHCN and their families to the services needed to succeed in living with their special health care needs. The CHWs work collaboratively with other systems of care to deliver and connect CSHCN and their families to the most appropriate services. The family and CSHCN are involved throughout all C2H processes.

 

At the conclusion of C2H services, families are provided with a client satisfaction survey that measures their engagement and overall satisfaction with the program. The survey also measures if they felt they were partners in decision making when it came to the development of their plan and individualized goals for their family. In 2022, 17 family satisfaction surveys were received at the conclusion of services and 100% of families who returned these surveys reported they felt they were partners in decision making when it came to the development of the care plan and individualized goals. Despite numerous outreach methods encouraging the completion of the satisfaction surveys, the BFH has been unsuccessful in receiving surveys from a greater portion of the 142 families enrolled in the program in 2022. Therefore, the BFH did not meet the goal of 52 families completing surveys. The BFH has provided technical assistance regarding survey collection and is working with grantees to identify new strategies to increase the number of surveys being returned. The objective has been updated in 2023 to align with the program goal of increased survey completion rates. This ESM has also been updated in 2023 to better reflect the satisfaction of clients served with the surveys that are received. The percentage of families who felt like they were partners in decision-making will be measured and reported.

 

Strategy: CSHCN receive coordinated, ongoing, comprehensive care within the medical system

 

A quality medical system ensures that children have continuity of care from infancy through transition into adulthood. In addition, the medical system must be supported to provide care coordination services so that each family and the range of professionals serving them work together as an organized team to implement a specific care plan and to address issues as they arise. Collaboration between the primary, specialty, and subspecialty providers to establish shared management plans in partnership with the child and family, and to clearly articulate each other’s role, is a key component of a quality medical system. Equally key is the partnership between the primary care provider and the broad range of other community providers and programs serving CSHCN and their families.

 

Objective: Annually increase the number of collaborative agreements with medical providers through the Sickle Cell Community-Based program by eight per year

 

ESM: Number of medical provider collaborative agreements established by the Sickle Cell Community-Based program

 

The goal of the Sickle Cell Community Based Services and Support (CBSS) program is to ensure individuals diagnosed with sickle cell disease (SCD) and sickle cell trait are supported with collaborative care, planning across systems and can be an active member of their community. These grants are designed to enhance communication and service provision between the client and the health care systems, enhance equitable access to services, support client integration into the community, and educate the community on the needs of those living with SCD. The purpose of this collaborative relationship is to improve care, systemically remediate disparities, alleviate barriers to care, and ultimately improve health outcomes and the quality of life for those living with SCD.

 

The CBSS requires the two grantees to identify and develop collaborative agreements with medical care providers across the state. These agreements support increased communication between medical care providers (such as health systems, insurance providers, primary care practices, specialists, mental/behavioral care providers, and pharmaceutical companies) by working to reduce service duplication, streamline referral processes, simplify care plans, and improve information-sharing. This increased collaboration between care providers resulted in individuals receiving coordinated and comprehensive care and allowed care providers to improve systems-function through policy and procedural changes.

 

In 2022, the CBSS continued plans to annually increase the number of collaborative agreements with medical care providers. In 2022, the CBSS established 12 new agreements with medical providers, exceeding the goal of eight.

 

Objective: Annually increase the percentage of CSHCN receiving quality care through project-funded FQHC health systems

 

ESM: Percentage of CSHCN receiving quality care in participating FQHC health systems

 

The BFH used Title V funds for the Federally Qualified Health Center (FQHC) Program. Through a grant agreement with the Pennsylvania Association of Community Health Centers (PACHC), the FQHC Program pursued two overarching goals: to improve programmatic, clinical, and operational performance within FQHCs related to CSHCN; and, to increase CSHCN access to well-functioning, continuous systems of care. Partnering with PACHC, the largest association of primary care practices in the state, allowed the FQHC Program to access CSHCN through medical home health centers.

 

The FQHC Program engaged CSHCN and their families in their condition management; screened CSHCN for mental, behavioral, emotional, and developmental conditions; referred CSHCN to appropriate services immediately upon positive screens; increased access to quality care; and transitioned CSHCN through life stages. Eight FQHCs participated in the program and provided 10,954 services to 7,116 CSHCN. This represented 23% of the 31,156 CSHCN in the participating FQHCs, exceeding the goal of 20% of CSHCN receiving quality care in participating FQHCs in 2022.

 

Objective: Increase the percent of families who successfully complete the Room2Breathe Asthma home visiting program by three percent annually

 

ESM: Percent of families who successfully complete the Room2Breathe Asthma home visiting program 

 

Receiving care within a well-functioning system can improve the health status of individuals, families, and communities at large. Health systems depend on a comprehensive and integrated range of clinical and public health interventions that respond to the health challenges identified within the community. These interventions along with mechanisms to hold providers accountable for access and quality and to ensure that the voices of those receiving services are heard are crucial to improving health. The Philadelphia Department of Public Health, partnering with Children’s Hospital of Philadelphia, trains community health workers on the Room2Breathe (R2B) evidence-based program and provides home-visiting services to families of children diagnosed with asthma. In addition to in-home visits, other methods of communication, such as video calls and text messages, are used to communicate with families. Services provided through the program include education, medication adherence, care coordination with primary care physicians, referrals to community resources, and environmental assessments to reduce in-home triggers. Families also receive assistance with pest management services and referrals for other identified needs related to social determinants of health. To be eligible for R2B, children referred must be between two and 14 years old, a resident of Philadelphia County, and have had two emergency department visits or hospital admissions for asthma-related symptoms. In Philadelphia, asthma disproportionately affects Black/African American and Latinx children in both prevalence and hospital utilization. Accordingly, R2B partners with pediatric clinics that serve patients matching those racial/ethnic backgrounds. The BFH chose to measure the number of children who successfully complete the R2B Asthma program to assess if the system is functioning well for families with CSHCN, assisting them in obtaining optimal health. Successful completion is measured by the number of participants who complete the 12-month follow-up visit. One hundred and ninety children were served by the program in 2022. Of these participants, 50% identified as Black/African American, 33% as Latinx, and 25% of participants’ race data was unknown/not reported. Seven (4%) of the 190 participants completed the program. R2B recognizes it has a high program attrition rate attributed to families dealing with multiple challenges that can lead to a premature exit from the program (moving out of Philadelphia, competing priorities, etc.). R2B will continue to work with families to improve asthma related symptoms.   

 

Strategy: Initiate regular meetings and collaboration between the Department of Health and Department of Human Services

 

The Department of Health (DOH) and Department of Human Services (DHS) each have an integral role in providing services to the MCH population. As Pa.’s Medical Assistance administrator, DHS oversees many programs serving underserved and under-resourced populations, including CSHCN. Through collaboration it can be ensured that the DOH is not duplicating services provided by DHS but is preserving Title V funds for otherwise unmet needs of the MCH population. The BFH holds bimonthly meetings with DHS’, Office of Medical Assistance Programs. These meetings are used to improve the systems of care for CSHCN. Topics of discussion include barriers to care, health disparities, and access to Medicaid services. This ongoing collaboration has improved communications between state agencies serving CSHCN, reduced duplication, improved appropriate referrals, and contributed to a well-functioning system.

 

Objective: Convene quarterly meetings between agencies that provide services related to CSHCN

 

ESM: Number of meetings held annually between DOH and DHS (CSHCN)

 

The BFH continued to collaborate with the PA DHS’ Office of Medical Assistance Programs in 2022. Meetings were held to discuss issues within the system of care for CSHCN, share resources, reduce duplication of services, and ensure that the proper funding sources are being utilized for individuals and families. This collaboration will strengthen the system of care for CSHCN across Pa. In 2022, five meetings were held, which exceeded the goal of four meetings annually.

 

Strategy: CSHCN are screened early and continuously for special health care needs

 

Within the CSHCN domain, screening includes ongoing monitoring and assessment of children and youth to promote health and well-being through family-centered care. It is critical to identify, as early as possible, children in the general population who have special health care needs so that they and their families can receive appropriate services to reduce long term consequences and complications. CSHCN also require ongoing assessments to identify newly emerging issues including developmental and behavioral issues, oral health, and psychosocial issues, and to prevent secondary conditions that may interfere with development and well-being.

 

Objective: Annually increase the number of children screened for autism spectrum disorder through the Autism Diagnostic Clinic by five each year

 

ESM: Number of children screened for autism spectrum disorder through the Autism Diagnostic Clinic

 

The Autism Diagnostic Clinic (ADC), through a grant with Easterseals Eastern PA uses telehealth technology to connect, assess and diagnose children aged 18 months to three years of age with autism spectrum disorder (ASD). After being screened using the Modified Checklist for Autism in Toddlers (M-CHAT) by Early Intervention, children are referred to the ADC. Children are then assessed using the Childhood Autism Rating Scale (CARS) and the Telehealth Autism Spectrum Disorder Pediatric Survey (TELE ASD PEDS) assessment from Vanderbilt University.

 

Following ADC inclusion on AMCHP’s Innovation HUB and the program’s continuing success, the Bureau entered into an agreement with Drexel University to evaluate program implementation, data use, outcomes, and replicability; and, pending the evaluation results, develop a model for program replication. The reports and materials created will be used to develop a plan to expand the ADC into additional counties across the state.

 

In 2022, 134 children were evaluated, exceeding the goal of 55. Of the 134 children evaluated, 118 were diagnosed with autism (88% of those evaluated). Once a child is diagnosed, the ADC provides care coordination services to assist families in enrolling in therapeutic and other services, as well as training families in applied behavior analysis (ABA) principles. In 2022, 57 families were trained in ABA principles and strategies. The use of telehealth in the ADC has provided an opportunity to expedite the diagnostic process and facilitate the initiation of appropriate treatments. By identifying ASD and initiating services early, outcomes across the life span for these children and families can be significantly improved.

 

Strategy: Community-based services are organized so families can use them easily

 

A community-based system of services is an infrastructure that operates across sectors, and multiple service programs – each with its own funding streams, eligibility requirements, policies, and procedures – to serve CSHCN. Given this complex structure of systems, it is imperative that Title V funded programs work within communities to facilitate structure and organization of available services.

 

Objective: Conduct outreach and BrainSTEPS program promotion to increase referrals by 15 per year

 

ESM: Number of referrals to BrainSTEPS program

 

The BrainSTEPS program collaborated with the PA Department of Education and BIAPA to conduct outreach and program promotion to expand knowledge of the program, the population it serves, and how to access resources. Increased awareness of the BrainSTEPS program, services, and resources contribute to the system of care for CSHCN, by allowing for an earlier referral to the program, identification and treatment of brain injury, and fewer long-term complications. In 2022, BrainSTEPS targeted outreach and program promotion to families with pre-school and school-aged children, rehabilitation facilities, medical professionals working with the pediatric population, and community organizations and agencies that serve primary and secondary school students. BrainSTEPS conducted a total of 32 presentations to a diverse audience of 2,370 participants. 

 

Prior to 2020, the BrainSTEPS program referrals were on an upward trend to consistently fulfill the goal to increase referrals by 15 each year. However, in the aftermath of the COVID-19 pandemic, the number of referrals significantly decreased. The program could not conduct the necessary outreach, program promotion, or service provision to fulfill the pre-pandemic referral goal. In 2022, the BrainSTEPS program continued to experience residual impacts of the pandemic. The program received 463 referrals, which was 90% toward the goal of 515 referrals, and a significant increase from the 315 referrals received in 2021. To continue increasing referrals, BrainSTEPS employed a Regional Facilitator (RF) in Pa.’s central region. The RF assists the 31 BrainSTEPS teams across the state to support each referral received in their respective location. BrainSTEPS developed a promotional program poster to be disseminated in 2023 to all 3,287 public schools in Pa. The poster contains information about the program, eligibility requirements, and a QR code that directs individuals to the referral page allowing them to easily refer a student in an accessible manner.

 

The BrainSTEPS program continued to implement the Concussion “Return to Learn” Management Team Model. This initiative enabled schools to implement in-house school Concussion Management Teams. These teams systematically improved the program’s success by ensuring students with mild TBI received necessary accommodations and appropriate referrals to BrainSTEPS. Program personnel provided training and technical assistance to Concussion Management Teams on concussion recognition and best practices. This additional support helped to identify and refer a designated number of new students to the program, along with helping additional school districts implement Concussion Management Teams within their school districts.

 

Objective: Annually increase the number of partnerships engaging community-based providers established by the Sickle Cell Community-Based program by eight per year

 

ESM: Number of community-based provider partnerships established by the Sickle Cell Community-Based program

 

The Sickle Cell CBSS developed partnerships with and between community-based service providers to enhance systems-level supports. Grantees sought out new community-based service providers to establish partnerships and strengthened existing partnerships. These partnerships support education and communication related to sickle cell disease within multiple settings (such as education, employment, religious worship, and recreation) and support increased integration of CSHCN into community activities. These partnerships are used to identify impactful social determinants of health and remediate barriers to care and support community integration. Through this work, the CBSS promotes increased interconnectivity and organization of community-based providers, which collaboratively strengthens the overall system of care.

 

In 2022, the CBSS established 10 new collaborative partnerships with community-‑based organizations, exceeding the goal of eight collaborations. Also, during 2022, the CBSS held a total of 44 community events including World Sickle Cell Day activities, educational sessions, and town hall meetings.

 

Strategy: Youth with SHCN receive services to make appropriate transitions

 

The primary goal of Title V in the transition of CSHCN is to improve the system that serves them while simultaneously preparing youth and their families with the knowledge and skills necessary to promote self-determination, wellness, and successful navigation of the adult service system. As adolescents approach adulthood, they take on increasing responsibility for their health and health care. For youth with special health care needs, this transition is especially important, as their medical needs may be complex, and they will eventually need to manage their medications and other aspects of their health themselves.

 

Objective: Annually increase the number of youth with special health care needs receiving evidence-based or -informed leadership development training through the Leadership Development and Training Program by 4 per year

 

ESM: Number of youth with special health care needs receiving evidence-based or -informed leadership development training through the Leadership Development and Training Program

 

The BFH partners with the PEAL Center (PEAL) to implement the Leadership Development and Training program which provides Parent/Family and Youth Leadership Institutes. The Parent/Family Leadership Institutes address relationships, sexuality, dignity of risk, and supporting self-advocacy. The Youth Leadership Institutes create a network among peers while building leadership and self-advocacy skills. During Youth Leadership Institutes and weekly youth virtual events. Youth were instructed on self-sufficiency and how to reach their potential as self-advocates while chatting with other young people. During 2022, 76 youth with special health care needs attended the Leadership Development and Training Program, significantly surpassing the goal of 44 youth.

 

In addition, 150 participants attended the Health Matters Conference which included presentations on “Preventing Challenging Behaviors” and “Surviving to Thriving”. The Family Leadership Institutes were provided both virtually and in-person with a total of 115 parents and family members served.

 

Objective: Of youth aged 14 and older being served in Community to Home, 50% will have appropriate transition plans within 6 months of receiving services

 

ESM: Number of youth 14 and older enrolled in Community to Home program who received a transition plan to transition to adult healthcare

 

Youth with special health care needs who are of transition age of 14 years and older are a subpopulation of CSHCN and face many challenges, including transitioning to the adult health care system. In the C2H program, individuals aged 14 years and older have an individualized care plan that includes a transition plan preparing transition to adult health care, independent living, post-secondary education, and employment. C2H services support transitioning youth during and after services end through the creation of a comprehensive transition plan. Youth transition plans are reviewed and monitored by the BFH for completeness and thoroughness. The BFH objective for 2022 was that at least 50% of youth 14 years of age and older enrolled in C2H have appropriate transition plans as part of their individualized care plans. In 2022,15 youth enrolled in the C2H program and 13, or 86.6%, of those youth had a complete transition plan as part of their individualized care plan. The ESM was not met as only 15 youth were enrolled, however, the larger objective goal of 50% of youth enrolled having a completed transition plan was met.

 

SPM: Percent of hospitals making referrals to EI

 

Strategy: Review and analyze neonatal abstinence syndrome (NAS) cases reported in iCMS to identify birth hospitals that are not making Early Intervention (EI) Referrals and provide technical assistance to improve referral rates

 

Objective: Annually increase the percentage of reported NAS cases receiving a referral to EI

 

ESM: Percent of NAS cases reported within iCMS referred to EI

 

Under the Governor’s statewide emergency disaster declaration for the heroin and opioid epidemic, a first for a public health emergency, the DOH was authorized to mandate hospitals report cases of NAS. Initially, cases were reported to the Bureau of Epidemiology. The Division of Newborn Screening and Genetics (DNSG) saw the opportunity to begin using iCMS, the newborn screening reporting and case management system, as a long-term solution for the state’s NAS reporting repository so that data could be collected and analyzed. The opioid disaster declaration expired in August 2021, following 15 renewals, when the Pa. General Assembly declined to extend it.  Reporting of infants diagnosed with NAS remains in effect under existing Department authority.

 

PA birthing hospitals began reporting all NAS cases to the DNSG directly through iCMS beginning January 1, 2020. iCMS is a web-based software application used by the DNSG for case management, tracking the management and follow-up of newborn filter paper and point-of-care screening results for infants born in Pa. All Pa. birth hospitals have an assigned NAS coordinator for their facility responsible for reporting all NAS case data into iCMS. All NAS coordinators receive iCMS training to prepare them for compliance with the mandatory state reporting requirements. The NAS reporting form submitted by hospitals includes detailed information pertaining to the plan of safe care (POSC) and post-discharge referrals. This information is analyzed for completeness, accuracy, and effectiveness.

 

The DNSG created a full-time NAS Nursing Services Consultant position that focuses on technical assistance centered around required reporting data, EI referrals, and statewide assessment of POSC. The NAS consultant organizes and participates in statewide and regional NAS meetings and uses information gathered during these meetings in conjunction with the NAS 2020-2022 data reported in iCMS to develop DNSG follow-up policies and procedures along with helpful tools for POSC coordinators.

 

Every infant diagnosed with NAS is eligible for, at minimum, Early Intervention (EI) at ‑risk-tracking services. With the transition of NAS reporting to iCMS in 2020, the DNSG began collecting EI referral data on the NAS case notification form as reported by hospitals. To further validate EI referral data, the DNSG signed a memorandum of understanding with the PA Departments of Education and Human Services, Office of Child Development and Early Learning, Bureau of Early Intervention Services and Family Supports (BEISFS) in 2020 to share EI enrollment data. NAS data collected via iCMS is shared with the BEISFS and cross-checked between data systems to verify the percentage of infants diagnosed with NAS who have received a referral for EI services. Findings were included in the 2020 Annual NAS Report, which indicated that approximately 25% (449 of 1825) of infants diagnosed with NAS were located in the EI database, confirming a referral to EI services. To date, 75 hospitals have reported NAS cases to the Department for 2022. Of those 75 hospitals, 56 (74.6%) have at least one confirmed referral to EI. The DNSG has been working in conjunction with the BEISFS to identify strategies and educational opportunities aimed toward improving EI referral rates for infants diagnosed with NAS. On a quarterly basis, the DNSG shares data with BEISFS detailing the percent of NAS infants with a confirmed EI referral broken down by individual county and hospital. This data has been utilized by BEISFS for targeted outreach to county programs with low percentages of referred children in relation to the total number of children identified. The intent was for those programs to build on their relationships with the birthing hospitals in their local area and ensure they are familiar with the referral process. In 2022, staff from the BEISFS presented educational information regarding EI services and referrals to hospitals and providers during an event for Newborn Screening Awareness.

 

SPM: Percent of eligible infants with a Plan of Safe Care

 

Strategy: Collaborate with the Office of Children, Youth, and Families (OCYF) to help support the enrollment into Plan of Safe Care

 

Objective: Annually identify and develop collaborative opportunities to share data and trends in NAS reporting and follow-up

 

ESM: Frequency data will be shared to enable OCYF and DNSG identify all infants who should have a Plan of Safe Care

 

The BFH houses the DNSG, which oversees reporting of NAS cases by all Pa. birthing facilities. Post-discharge information, to include initiation of POSC, is a required section of the electronic NAS report form submitted by hospitals to DOH when an infant is diagnosed with NAS. DHS’, OCYF is primarily responsible for monitoring the delivery of services by county and private children and youth social service agencies as well as ChildLine, which is the child abuse reporting system. The OCYF conducts oversight of these programs from a regional level.

 

Per findings presented in the 2020 Annual NAS Report, a notification to ChildLine was made for 84.49% of newborns with NAS and 56.27% had a POSC initiated. According to 2022 preliminary data extracted from iCMS, a notification to ChildLine was made for 89% of newborns with NAS and 64.5% (790 of 1,225) had a POSC initiated. Given that all newborns with NAS who meet the Department of Health’s NAS case definition may also be considered substance affected infants per the DHS definition, these percentages should be higher and may indicate a need for improved provider education on reporting requirements. However, data on ChildLine notifications and POSC are self-reported by the hospital and further validation by the DHS or the OCYF is not currently required. Accordingly, reported data may not accurately reflect notifications received by DHS or involvement of the OCYF.

 

In September 2021, a formal data exchange summary was finalized and signed by DNSG and OCYF. The data exchange summary provides the DNSG with the ability to send identifiable NAS data to OCYF on a quarterly basis. The first data exchange was executed in October 2021. In 2022, OCYF continued the process of analyzing quarterly data through matching of NAS data with the Child Welfare Information Solution (CWIS) system. OCYF reported this task to be difficult and time consuming with the need to develop improved processes for analysis. OCYF was unable to provide definitive findings but did report concerns regarding the percent of NAS infants receiving a Child Line referral and POSC.

 

In January 2022, another formal data exchange summary was finalized and signed by DNSG and OCYF. The data exchange summary provides OCYF with the ability to send de-identifiable CWIS data to DNSG on a biannual basis. The first data exchange was executed in October 2022. DNSG was hopeful that the CWIS data received could be matched with NAS data, but the data did not include enough data variables for a match to be possible. The DNSG and OCYF are continuing discussions regarding exchange of data, processes for analysis, and next steps.

 

In 2022, the DNSG was able to take several steps to address disparities in rural areas relating to NAS. Through NAS reporting, surveillance, and data analysis, the northwest region of Pa. has been identified as having the highest NAS incidence rates within the state. In January 2022, the DNSG announced a new resource for infants and families impacted by NAS. The Neonatal Abstinence Syndrome Family Guide Tool Kit was created by DOH nurses in the northwest district in conjunction with the Northwest Neonatal Abstinence Syndrome Coalition. The toolkit was added to the DOH’s webpage for NAS and copies are available to hospitals and providers upon request. The DNSG distributed several hundred copies of the toolkit during events in the northwest specifically aimed at addressing NAS.

 

Also in 2022, the DNSG convened a grant funded project with a community partner within the NW region (Crawford County Drug and Alcohol) to initiate a pilot project for infants and families impacted by NAS. The pilot project consisted of the development and distribution of an NAS toolkit/booklet and baby basket containing various items identified by neonatal intensive care unit staff as fundamental in caring for infants diagnosed with NAS.

 

Lastly, the DNSG initiated conversations with the West Virginia Health Department to address concerns relating to Pa. resident births in West Virginia. The DNSG has identified concerns relating to lack of notification of Pa. resident infants diagnosed with NAS and born out of state, raising additional concerns relating to post-discharge referrals and services. To address these concerns, the DNSG contacted West Virginia’s Health Department to discuss the possibility of developing a data share agreement, which would provide the DNSG with notification of Pa. resident infants diagnosed with NAS born at a West Virginia facility. The data share agreement was not finalized in 2022 and ongoing conversations continue.