FOR IMMEDIATE RELEASE
People with disabilities and community partners demand SC agencies address barriers to federally mandated Medicaid services for children with disabilities
A call for state action toward the federally mandated program, EPSDT, for children on Medicaid
COLUMBIA, SC (October 16, 2024) – Able South Carolina (Able SC), a disability-led advocacy organization and people with disabilities, are spearheading a vital effort to address the systemic failures in South Carolina’s Medicaid program that are harming disabled children, particularly those with autism, mental health needs, and co-occurring conditions. Today, a demand letter was issued a formal demand letter to the South Carolina Department of Health and Human Services (SCDHHS), Department of Mental Health (SCDMH), and Department of Disabilities and Special Needs (SCDDSN), urging immediate reforms to ensure that all Medicaid-enrolled children in the state receive the services they are legally entitled to under federal law.
Additional partners of this effort include Disability Rights South Carolina, AccessAbility, Walton Options for Independent Living, and New Disabled South.
The demand letter, backed by the experiences of parents, disabled youth, and disabled adults, highlights alarming deficiencies in the state’s Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program. The program is mandated to provide comprehensive healthcare services to all children who are on Medicaid. Currently, disabled children across South Carolina are unable to access necessary services to ensure greater success for them. These services include intensive care coordination, in-home services, mobile crisis response, and other specialty services that a child or youth needs, all of which are essential to preventing unnecessary institutionalization.
“South Carolina is failing its disabled children,” said Kimberly LaJoie Tissot, President and CEO of Able SC. “These children and youth deserve the care they are entitled to under federal law, but instead, they are forced into institutional settings where their needs go unmet. Our state has the resources and knowledge to do better, and we will not stand by while these rights are ignored. The disability community is tired of being afterthoughts, and we demand respect.”
Through the South Carolina Disability Public Health Coalition, Able SC convened a workgroup of disabled individuals, parents, attorneys, and advocates to investigate the barriers to accessing Medicaid services. The group identified critical service gaps, leaving many children without the support they need to remain in their communities and attend their neighborhood schools. These gaps are contributing to worsening mental health conditions, unnecessary emergency room visits, and even placement in restrictive institutional settings like Psychiatric Residential Treatment Facilities (PRTFs).
The demand letter also outlines the state’s obligations under the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act, which prohibit the unnecessary segregation of individuals with disabilities. Additionally, the state is violating the Medicaid Act. South Carolina’s failure to provide necessary home and community-based services violates these federal laws.
Able SC is calling on the South Carolina state agencies to collaborate with the disability community to address these systemic failures and develop meaningful solutions within the next 30 days. The organization and its partners are ready to assist in reforming the system to better serve disabled children and their families and ensure they receive the care they need to thrive.
To show their commitment, Able SC developed a fully accessible tool to walk families through securing appropriate EPSDT services as well as how to prepare for the transition to adulthood utilizing Home and Community-Based Services (HCBS).
“Families should not have to institutionalize their children to get them the care they need,” added Tissot. “With the right services, these children can remain with their families, live in their communities, and grow into independent adults. These children are our future.”