Take Action!

For the past few years, disability advocates across the state have sought change across South Carolina’s often disjointed, fragmented, health care system that is far too difficult to navigate to receive services. We were hopeful for change when a bill, S.915, was created and supported by both Republicans and Democrats in the SC Senate. It was then supported by the majority of lawmakers in the SC House. We fully expected it to pass in the General Assembly and move to the Governor’s desk for signature, where it would become law.

 

Sadly, our efforts to help provide lasting change to our healthcare system that will improve daily life for people with disabilities were blocked in the final moments. How? The House Freedom Caucus chose to play legislative games with the lives of the over one million people affected!

 

Able SC stands with Senate President Thomas Alexander, Senate Leader Harvey Peeler, and disability rights champion Sen. Tom Davis, among others, and their call for the General Assembly to finish the work this year and send bill S.915 to Governor McMaster for his signature. Killing this bill and forcing us to try again next legislative session continues to put people with disabilities at risk. We will continue to be discriminated against and experience unreliable healthcare without this needed change. 

 

Passing S.915 modernizes South Carolina’s six separate healthcare agencies into one entity. It will ensure the state is in compliance with federal laws protecting people with disabilities. Safeguards created by federal law and Supreme Court rulings are not being upheld in South Carolina because of inconsistent leadership, lack of oversight, and rampant misspending. These include rules from the Centers for Medicare and Medicaid Services (CMS), the Older Americans Act, the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and the Olmstead Decision – among others. With bill S. 915, South Carolina can become a leader in disability services through the creation of a dedicated, disability focused-department. The department would oversee compliance and set community integration goals which are currently non-existent. 

 

Our own research and lived experiences echo that of the Boston Consulting Group showing that lack of oversight by the governor, has led to “a lack of a cohesive statewide strategy for populations, gaps in available care, and challenges to navigate the system.” Without S.915, South Carolinians, disabled and non-disabled alike, continue to be at risk of abuse, neglect, harm, and even death.

 

Here is how S. 915 can improve lives today:

• Alex – an Autistic teenager who also has significant seizures, suffered severe abuse and neglect at a residential facility. Initially, 90% potty trained, Alex regressed to wearing pull-ups 24/7. For more than a year, Alex had no teachers and he was deprived of essential educational and behavioral support. He went over five years without necessary ankle/foot orthoses, leading to severe physical deterioration. Still today, his ankles turn inwards to the point that he practically walks on them. Alex suffered from numerous injuries, including, but not limited to, lacerations, bites, falls (which resulted in the need for staples to the head), a broken collar bone, and a nail that was bitten off (which resulted in the dismissal of a member of personnel and a lifetime ban on working with children). Alex was taken to the hospital for treatment. After months in a hospital and treatment cycle, Alex’s medical bills reached millions. With S.915 in place, leadership reporting to the governor could push for stronger home and community based services that would have allowed Alex to live with his family and thrive. Rather, lack of this option has resulted in the state with a dramatically more costly healthcare option that restricts Alex’s quality of life.
   
• Courtney: Courtney, a young mother, experienced a brain injury from alleged abuse by her boyfriend. After this abuse, Courtney’s medical needs became more complex. Following countless months of hospital treatment, it was determined that she could not be discharged to her home or a local rehab facility because South Carolina would not accommodate her complex medical needs. Instead, the hospital was only willing to enforce a state-recommended transfer to a nursing facility in Maryland – 7 hours away from her mother and three young children. Hospital staff threatened to assume guardianship if her mother didn't comply with their out-of-state discharge plan. Courtney entered a battle for her life. Courtney's need for complex medical care could have been met with home and community-based services, allowing her to stay with her family. Instead, because our state’s systems are fractured and deprioritized, Courtney was threatened with out-of-state travel or to die alone in hospice, all while languishing in the hospital at the cost of state taxpayers.
   
• Linda: Due to poverty and a lack of disability-informed organizations in Oconee, Linda, an Autistic mother of six children with disabilities, faced severe challenges accessing services. Despite a court order for more support, the state's failure to provide accessible services led to Linda's inability to comply. Consequently, her children were put in foster care, involving yet another state agency. Equitable distribution of services, as proposed by S.915, would have kept Linda's family together and prevented the costly expense of multiple state agencies' resources. Passing this bill is crucial to prevent such injustices and ensure families like Linda's receive the support they need.

South Carolina is in a crisis of misspending, legal risks, and most importantly, destruction of lives due to its failure to support people with disabilities. In 2023, 41,078 people were waiting for HCBS waivers, one of the longest waiting lists in the nation. These failures impact everyone.

S.915 would help alleviate these concerns and would, most importantly, help protect the rights and dignity of people with disabilities and ensure equitable access to public life.

South Carolina’s healthcare system must be improved, and S.915 is the way to do it.