“I sleep good at night because I take care of my kids well,” stated Mrs. Johnson, of her twin sons. Mrs. Johnson’s sons are both on the Autism Spectrum, and she participated in a recent focus group conducted by South Carolina Appleseed Legal Justice Center to learn about parents’ and caregivers’ understanding of their children’s Medicaid benefits.
Here in South Carolina, 63% of all Medicaid enrollees are children. Child beneficiaries are guaranteed their access to full health care coverage through Early and Periodic Screening, Diagnosis and Treatment (“EPSDT”). EPSDT provides wrap around services ensuring beneficiaries receive age appropriate screenings. Additionally, when a diagnosis is made, resulting treatment is fully covered. This right to care includes dental, physical health, mental health, developmental and behavioral health, along with many other medically necessary specialty services.
Medicaid is a lifesaver for many parents like Mrs. Johnson, who depend on this program to cover Applied Behavioral Analysis (“ABA”) therapy services for her sons. According to the Early Autism Project, ABA therapies are crucial for children on the Autism Spectrum, by helping these children learn to manage their behavior and cultivate basic and complex skills.
Without the coverages Medicaid includes because of EPSDT, Mrs. Johnson would likely have little or no access to these vital services. But, even with the many benefits, EPSDT is not perfect. At the focus group, Mrs. Johnson recalled a time when one of her twin sons lost coverage for his ABA therapy services due to an administrative error, while his twin brother’s coverage for the same services continued. While she relayed this story, many parents’ heads nodded in solidarity.
Eventually, Mrs. Johnson was able to get her son’s services reinstated, but it is these types of struggles we are working toward minimizing. Caring for a child with special and medical needs is challenging enough without having to cope with unnecessary barriers to essential health services. This is particularly important, as forty-nine percent of children with Medicaid and CHIP have disabilities or other special health care needs such as juvenile diabetes, congenital heart conditions, or asthma.
We are conducting these focus groups, like the one Mrs. Johnson attended, as part of a partnership with the National Health Law Program (NHELP), and community partners to create a blueprint of best practices and recommendations for the full utilization of the EPSDT benefit in South Carolina. Based on responses in the focus groups conducted so far, it is already becoming clear that there are many significant barriers to accessing covered services. In addition, there appears to be a great deal of misconceptions about the full range of services covered by the benefit. These factors contribute to the underutilization of coverage meant to provide comprehensive health care to South Carolina kids.
Despite the many challenges, barriers, and misconceptions that exist about EPSDT, the benefit provides health care coverage for over 630,000 children in South Carolina. According to studies conducted by Georgetown University Center for Children and Families and the American Academy of Pediatrics, it is clear that South Carolina’s most vulnerable children depend on Medicaid. Furthermore, 100% of the children in foster care in South Carolina have access to Medicaid. The vast majority of these children have already faced poverty, family dysfunction, neglect, and abuse. As a result of these childhood traumas, children in foster care experience much higher rates of chronic ill-health, developmental delays, and emotional problems. For these kids, the additional services mandated by EPSDT is often a lifesaver—literally.
To fully understand the current state of EPSDT in South Carolina, we’re not only getting input from parents, but we’re also surveying South Carolina pediatricians and other children’s health care providers to measure their knowledge of the EPSDT benefit. Early responses indicate that many providers realize they are underinformed, and they would like to learn more about the EPSDT benefit in our state to ensure their patients receive the best care possible.
Once compiled, all of this data will be presented to the South Carolina Department of Health and Human Services, along with our blueprint for making EPSDT work better in our state. Our hope is that our recommendations can help fill existing gaps in information and services and remove barriers that currently prevent many South Carolina children from enjoying the comprehensive health care they are eligible to receive.
In the words of Mrs. Johnson, “When you’ve got kids with disabilities, you have got to make it your business in order to be able to function and make everything work,”. It is that spirit that brings us to this work. We believe that if we all work together, this essential benefit can become even better, and we’ll be one step closer to the ultimate goal of improving access to health care for all children in our state.