A Family Caught Between Systems: Fighting to Keep Daddy at Home

A Family Caught Between Systems: Fighting to Keep Daddy at Home

Cassie Pettit and her family are doing everything they can to keep her 76-year-old father safe at home. But like many South Carolina families caring for someone with significant disabilities, they have found themselves caught between programs that each provide part of what he needs, but not enough to make his care sustainable.

Cassie’s father lives with severe disabilities following a traumatic brain injury and subdural hematoma that required a craniotomy in 2025. He also has vascular dementia, expressive aphasia, and significant physical impairments. He cannot walk independently, needs maximum assistance with transfers, and relies on others for nearly every aspect of his daily care.

At home, much of that care falls to Cassie’s mother, who is in her mid-70s.

Cassie is their only child. She works full time as a registered nurse while also helping manage her father’s medical care, benefits, appointments, caregivers, and advocacy. With no extended family available to share those responsibilities, the family has had to piece together support wherever they can find it.

Her father receives Medicare-funded hospice care, which provides important clinical support and intermittent aide visits. But hospice does not provide the extensive daily personal care he needs. The family privately pays caregivers for some of those hours, while Cassie’s mother provides much of the remaining hands-on care.

That arrangement is becoming increasingly difficult to sustain, both financially and physically.

The family has pursued assistance through South Carolina’s Head and Spinal Cord Injury (HASCI) Waiver. Cassie’s father completed the eligibility process through the Office of Intellectual and Developmental Disabilities and was found eligible. He has a case manager through Care Lync and, at the time the family shared their story, was number 349 on the HASCI Waiver waiting list.

His case manager has also submitted a request for reserve-capacity consideration because of the severity of his needs, the absence of other family or natural supports, and the financial and caregiving hardship the family is experiencing. That request remains under review.

At the same time, the family has encountered another difficult issue.

They were informed that while Cassie’s father is enrolled in Medicare-funded hospice, many HASCI services, including attendant care and respite, may not be authorized. For this family, those services address a very different need. Hospice provides end-of-life clinical care, while attendant care and respite could provide the day-to-day support necessary for him to remain safely at home.

The result is a situation Cassie never imagined her family would face: potentially having to choose between important hospice support and the daily personal-care assistance her father needs.

Her father also served in the Army National Guard for 29.5 years, nearly three decades. Because his brain injury was not service-connected and his service does not meet applicable eligibility requirements for certain veterans’ benefits, those programs have not provided the additional caregiving support the family hoped might be available.

For Cassie, this is about more than one family.

It is about what happens when someone has significant disabilities and extensive support needs, but the systems meant to help do not fit together in a way that allows a family to safely and sustainably provide care at home.

“We are not asking for special treatment,” Cassie wrote. “We are asking for a safe and sustainable way to care for a profoundly disabled man at home without destroying the health and financial security of the family caring for him.”

Cassie is now reaching out to elected officials and advocates, both for her father and for other South Carolina families facing similar gaps.

Her family’s story is a reminder that access to home- and community-based services is not an abstract policy issue. Waiting lists, funding decisions, eligibility rules, and gaps between programs have a direct impact on whether people with disabilities can receive the support they need in their own homes, and whether the families caring for them can continue doing so.