By Barb Drosey
James Guevara, MD, MPH, a passionate advocate for kids’ health and well-being, greets visitors with a warm smile and soft voice. A founding member of PolicyLab at Children’s Hospital of Philadelphia, and senior fellow at the Perelman School of Medicine at the University of Pennsylvania Center for Public Health Initiatives, Dr. Guevara wants to help families connect with early intervention (EI) services to help children experiencing developmental delays get the best start in life.
“The earlier children access EI services, the easier it is to ameliorate developmental delays so, by the time they start kindergarten, they are on a more level playing field with their peers,” Dr. Guevara said.
While developmental delays aren’t unusual among young children, poor minority children are disproportionately affected, leading to disparities in early child development. Only about half of at-risk children make use of EI services available to them through Individuals With Disabilities Education Act mandates, such as speech, physical, and occupational therapy; certain autism services; and cognitive/social/emotional services, and therefore they miss out on programs that enable immediate improvements and bear upon long-term success.
Dr. Guevara’s ongoing project “Reducing Disparities in Early Intervention Use: The Opening Doors to Early Intervention Study” aims to increase access to EI services for eligible families who are challenged with finding their way through the system. Supported with more than $3,800,000 from the National Institute on Minority Health and Health Disparities, and in partnership with Philadelphia County’s Department of Behavioral Health and Intellectual disAbility Services (DBHIDS), ChildLink, and KenCrest, the project will determine whether parents acting as family navigators increase the number of families accessing EI services.
Parents may self-refer their child to DBHIDS or be referred by their pediatrician. Then, families start down the EI referral pathway that includes an intake and connection with a participating service agency. From that point, families must establish eligibility for EI services through a registration process, service coordinator assignment, home visit, and standardized multidisciplinary evaluation. Children must exhibit a 25 percent delay in any domain of development (e.g., speech, motor, language, social/emotional development) to access services in Pennsylvania.
“It’s a complicated system, and particularly challenging for poor and single-parent families to negotiate while working and parenting other kids,” Dr. Guevara said.
Following the promising results of a pilot study that showed increased engagement with EI programs when family navigators helped initiate and facilitate completion of services, Dr. Guevara and his team considered how that component of the project held promise as a sustainable model worthy of further study.
“What we heard from our EI partners in the pilot study was that parents listen to other parents who had gone through the program,” Dr. Guevara said. “We realized there’s a whole pool of parents who have gone through this process and could be trained as family navigators.”
The study team reached out to urban minority parents who had successfully accessed EI services to assess their interest in serving as family navigators to provide education, motivation, and assistance to families throughout the process. Researchers identified an African-American parent and a Hispanic parent, individuals representative of the two main patient populations the study would likely recruit, to serve as family navigators.
“Talking with another parent really helps to establish a rapport with families,” said Sherry Winston, clinical research project manager in the PolicyLab at CHOP. “A member of this research team has information and can provide resources, but a parent can connect with them on a different level. Being able to share their own experience and say, ‘I've been through this’ is a powerful tool that helps establish a relationship that is key to participation throughout the study.”
A year into the study, 44 families have been recruited from the Nicholas and Athena Karabots Pediatric Care Center, CHOP Primary Care at Cobbs Creek, and Primary Care in South Philadelphia. The five-year goal is a total of 360 parent-child dyads with children less than 30 months of age who are identified as developmentally at-risk and referred for EI services. Participants are randomized to the Opening Doors to Early Intervention Program or usual care.
The first and final study visits are in-person, and every three months the study team keeps in touch with families via structured phone and email surveys, as well as some non-study-related communications such as electronic birthday cards, an e-newsletter, and general parenting tips, to help build the trust and relationships so important to this work.
“Engagement is one of the most important things,” Winston said. “Whether they’re in the intervention arm and experiencing the relationship with the family navigators throughout the study, or if they’re in the control arm, we emphasize that their voices will be heard, and they can always reach out if they have questions.”
One barrier to recruiting study participants is stigma surrounding a diagnosis of developmental delay exists. Parents may feel confused about what a delay means or disagree with the referring pediatrician. Some of these challenges are resolved with education about how their child is performing compared to typically developing children.
“Parents often notice that their kids described as delayed are still developing,” Dr. Guevara said. “They are still developing, but they are also still behind, so we try to help them understand typical child development, what their child’s strengths and weaknesses are, and how they can be better prepared with expectations.”
Another challenge to EI participation is problem-solving. When a single parent with a full-time job gets called into work the day of their scheduled visit with early intervention services, how do you help families find alternative arrangements? Part of the study involves matching parents with services to help them get through the process with minimal stress.
Dr. Guevara credits CHOP’s well-developed research infrastructure with easing the way for his work, as well as the enthusiasm with which the City of Philadelphia partners with his team.
“Being able to help kids access services in a city that’s committed and willing to make this a sustainable model is very exciting,” Dr. Guevara said, adding his vision for replication of the program. “If this program results in a greater percentage of participation in Philadelphia County, it’s likely that it could also be successful in New York, Los Angeles County, Cook County, and rural counties, too.”