LISA ARCHIBALD has been caring for her profoundly disabled brother John David in her home for more than 20 years. John David, 36, is non-verbal, quadriplegic, and medically fragile because of cerebral palsy, polymicrogyria, and dysplasia. He lives in Archibald’s home and requires 24-hour care. He has seizures, restrictive lung disease and silent aspiration into his lungs, which requires constant supervision to prevent choking.
Archibald has been able to care for her brother in her home with the help of a patchwork of support staff, funded by a Medicaid waiver for daily in-home care.
“He really requires 24-7, two-to-one care, but we’ve been making do with the staffing hours we’ve had for many years,” explained Archibald, 53, who provides much of his hands-on care herself. She assumed responsibility for his care since their mother died 23 years ago. She removed walls in her living room to accommodate his bed and medical equipment. His care is center-stage in her life.
But that care is now uncertain, and Archibald faces a grim decision.
If proposed caps for support for Georgia’s medically-fragile residents become reality in two months, “Families will have to make one of the most gut-wrenching decisions of our lives: to choose between quitting our jobs, losing the ability to support ourselves and other family members in order to care for our person, or placing our medically-fragile family member in a group or nursing home,” she said.
“My brother was in a group home for several years, and nearly died. To place him back into another group home would be a death sentence. He would not survive. John David loves being at home and being a part of our community,” she said. “He knows he’s loved.”
Pictured: Lisa Archibald adjusts tube that constantly feeds into to her brother’s stomach.