By Danielle Rhodes, Public Health Program Administrator, Pennsylvania Department of Health, and Mary Glazer, Program Manager, Philadelphia Department of Public Health

Larry and his Son’s Story   

Larry N. is a parent to a son with autism who joined the replication project’s parent advisory council (PAC) of this initiative because he was having trouble accessing autism care after moving to Philadelphia from New York City. He wanted to advocate for his son. Larry has been an integral member of the PAC and has even applied to participate in additional opportunities based on what he learned through the advocacy and systems trainings. The Philadelphia Department of Public Health (PDPH) offered an opportunity to apply for the Association of Maternal & Child Health Programs (AMCHP) Leadership Lab. He emailed back, saying, “Without my (nearly) year [serving on] the PAC, I would not have had a chance to know about such a training, let alone [would I have] felt capable of pursuing it.”

Background

Since 2010, the Children and Youth Branch of the North Carolina Division of Public Health has awarded Innovative Approaches grants to ten local health departments to service 24 counties. Innovative Approaches (IA) uses a family-driven systems change approach rather than a program-based approach to address community improvements for families of children and youth with special health care needs (CYSHCN). To bring about community change, the IA initiative encourages an ongoing and comprehensive analysis to identify all the policies, both formal and informal, that impact how services are provided, and then to revise those that pose barriers to the system of care for CYSHCN, or to create new more supportive policies, procedures, or practices. IA engages families and other decision-makers to look at the total service delivery system, identifying gaps, duplication, and overlaps in services and to facilitate inter-agency communication and coordination; such as wrap-around services, joint decision-making, unified assessment and intake processes, and shared information systems. In 2019, the Pennsylvania Department of Health (PA DOH), Bureau of Family Health (BFH) found that there was a need to address the Title V priority of children receiving care in a well-functioning system in PA. Striving towards a well-functioning system includes increasing the percentage of CYSHCN who meet the following criteria, as per The Health Resources and Services Administration (HRSA): families of children and youth with special health care needs will partner in decision-making at all levels, and will be satisfied with the services they receive; all children and youth with special health care needs will receive coordinated ongoing comprehensive care within a medical home; families of children with special healthcare needs have adequate health insurance and financing to pay for needed services; all children will be screened early and continuously for special health care needs: services for children and youth with special health care needs and their families will be organized in ways that families can use them easily; all children and youth with special health care needs will receive the services necessary to make appropriate transitions. The goals of IA are based on this national Maternal and Child Health Bureau outcome measure.

BFH identified IA as an evidence-based program that could be replicated to improve systems of care in the city of Philadelphia. In the spring of 2021, the BFH was awarded a replication grant from the Association of Maternal & Child Health Programs (AMCHP) to build capacity to prepare, implement and replicate North Carolina’s Innovative Approaches (IA) initiative.

In collaboration with the Philadelphia Department of Public Health (PDPH), technical assistance from AMCHP, and coaching and mentoring assistance from North Carolina’s IA program experts, a year was spent building capacity and identifying key community members, including parents and human service providers, holding focus groups, and providing trainings in order for committee members to build the skills needed to implement this initiative in Philadelphia County.

Approximately 21 percent of children ages 0 to 17 in Pennsylvania are children and youth with special health care needs (CYSHCN). Data for CYSHCN, as broadly defined by HRSA, are not gathered at the county level. However, it is reasonable to assume that overall, in Philadelphia, well over 20 percent of children and youth have special health care needs. In addition, 15,000 students in Philadelphia have individualized education plans (IEPs). This means the families of at least 15,000 children and youth must find disability services and resources within the city. These resources are often not easily accessible, and services are difficult to access due to high demand.

Goal

Our goal in replicating this systems change program is to empower parents as advocates to change policies, practices, and procedures throughout the city. These changes will hopefully ease the stress parents feel when they interact with the health care system and improve the care their children receive. BFH and the PDPH did not have initiatives and practices implemented or engrained to specifically target and work to eliminate systemic barriers and overall improve systems of care that serve CYSHCN. It was not until spring 2021, through the AMCHP replication grant, BFH and PDPH was able to adopt the IA initiative to specifically target system improvement, policy change, and address health equity for CYSHN.

Activities and Results

The first year of this project focused on capacity-building and assessing the needs of the community. Throughout this project, 19 parents and caregivers and 33 healthcare providers and other stakeholders, including professionals serving in education and human service fields, were recruited to be involved in this program. These 52 participants make up the steering committee. Additionally, parents serve on the Parent Advisory Council.

We conducted focus groups with 10 parents across three groups (two in English, one in Spanish). A few key themes emerged from the focus group discussions:

• Poor levels of partnership with care providers
• Limited coordination of care
• Limited access to resources and information
• Limited implementation of IEPs
• Lack of educational support from healthcare providers and service coordinators

The PEAL (Parent Education & Advocacy Leadership Center), whose mission is to educate and empower Pennsylvania families to ensure that children, youth and young adults with disabilities and special health care needs lead rich, active lives as full members of their schools and communities, gave a presentation to the parents on advocacy skills and BFH and PDPH coordinated with AMCHP to conduct two systems change trainings. These trainings, helped parents learn how to voice their concerns in a manner that can lead to effecting meaningful change and lay a foundation in systems change work. Based on feedback from parents about the benefits of a central information hub, the authors worked with the parents to create a Facebook group where they could share information about upcoming events, resources, and other important information. A video was created to share available resources and will be posted to community agency web pages in Philadelphia. The video is available in English and Spanish and is accessible to deaf and hard of hearing communities. This video was created through collaboration with the Philadelphia Mayor’s Office for People with Disabilities once they learned about this important initiative through Mary’s outreach and promotion of the replication project.

This project launched virtually due to the COVID-19 pandemic, although the original plan was for it to be in person. However, it turned out that meeting virtually works better for many of the parents. One parent noted that if the meetings were in person, she wouldn’t be able to come. A few of the participants are single parents; thus, accessing in-person meetings might have been difficult due to challenges in finding child care. In addition, it can be a barrier and inconvenient for participants to attend a meeting that is centrally located downtown, as parking or public transit is not always the most convenient. Our families appreciated being able to attend meetings in the comfort of their own home and still being present with their families as they multitasked helping with homework or grabbing dinner during PAC meetings.

Next Steps

Next steps are as follows:

• Develop an action plan with the families, at which point the PAC will elaborate on the intended outcomes of this project. Specifically, this involves delineating the number of policy, practice, and procedure changes that can be implemented.
• Identify specific details about the systems change objectives, the number of stakeholders that will need to be engaged, and the timeline for completing the work.
• Direct the caregivers in forming subcommittees which each focus on a particular goal, such as education, medical services, or general advocacy.

PDPH will also look into partnering with an MPH student who is also a pediatrician at Children’s Hospital of Philadelphia to start an Instagram page to share resources. We think using reels and stories would be a great way to engage parents in an accessible manner.

PDPH was awarded $100,000 per year for three years from the Pennsylvania Department of Health to continue this work. PDPH knows that changing systems requires significant time and collaboration. The department is very grateful for this additional support and collaboration. A part-time family advocate also will be hired through these awarded funds. This person will serve as a representative and liaison for this project and will collaborate and work closely with community members.

Concluding Thoughts

The authors agreed that participating in this replication project was extremely valuable to their professional work. Ms.Glazer had just started working at PDPH a year ago at the project’s inception and noted that being able to “hit the ground running” to engage families and help them get the best care for their children is very rewarding. Both authors noted that the replication project has helped them understand the systems of care more thoroughly, and Ms. Glazer has made additional connections throughout the community. Ms. Glazer and Ms. Rhodes reported that they received invaluable coaching support from North Carolina’s Innovative Approaches program staff. These coaches have worked on Innovative Approaches since its inception and had specific expertise that was very helpful to PDPH and DOH when building capacity for this program. The coaches provide constructive feedback and a model for what this program can do. Knowing the possibilities that may emerge from this work is motivating and empowering. The authors expressed that working with the families has been a powerful learning experience and encouraged those who work on community projects that support families and children with special health care needs to apply to participate in a replication project if they are given an opportunity.