By late morning, it’s getting hot in Lisa Archibald’s garage, even with the big door pulled open.
She points a whirring box fan at her brother, John-David Mixon. He sits in a wheelchair and watches the occasional car pass by their home in Byron, Georgia.
One of Mixon’s nurses, Pam Walton, tends to his feeding tube, giving Archibald a welcome break.
“I can go 72 hours at a time without taking more than a 20-minute catnap on the sofa or in the recliner,” Archibald said.
Archibald spends much of her time caring for Mixon. He’s 35 and has cerebral palsy and polymicrogyria, a condition where his brain has too many folds, which keeps him from speaking.”
Archibald says just can’t find enough nursing help and picks up the slack herself. There’s certainly no shortage of things Mixon needs.
“He gets changed every two hours. He gets some type of medication or intervention 26 times a day,” Archibald explained.
That work has kept Archibald from keeping a full-time job and strains her relationships.
Mixon spent six years in a state institution after their parents died. These days, Archibald worries she’s running out of options, and he may have to go back.
“It’s seriously at the point now to where I have to sit down and decide: Am I going to lose my home? Am I going to lose my finance and save [John-David] or do I save myself?” Archibald said.
It’s been two decades since the U.S. Supreme Court said that people like Mixon don’t need to live in institutions to get services and deserve to get community care.
That decision came in Olmstead v. L.C., a Georgia case involving two women with mental disabilities. On June 22, 1999, the court ruled people with disabilities deserve to live in their communities.
But making that a reality hasn’t happened overnight.
“It’s been a slow process here in Georgia, I would say. There was not a light switch that flipped on and everything was perfect,” said Susan Goico, with Atlanta Legal Aid, who helped work on the Olmstead case.
Goico says in the years immediately after the decision, Georgia officials formed a blue ribbon task force to decide how the state would comply. That gave way to an Olmstead Planning Committee.
“There were a lot of planning meetings, I would say, but not a lot of action and not a lot of funding that’s necessary to build an appropriate community service system,” Goico said.
“That’s just not acceptable,” Goico said. “To me, it’s an issue of having some urgency about this, recognizing that it’s a civil right for people. It’s not optional.”
A lack of spots in community programs is a common problem, says Bob Dinerstein. He runs the Disability Rights Law Clinic at American University.
“That’s challenge No. 1: How to make this enough of a priority,” he said. “So that a state and the legislature and the governor don’t just say, ‘Well, it would be nice if we could do this.’ But rather say, ‘No, this is really an imperative.’”
But Dinerstein says each state is different. Some have expanded services more than others.
“It’s a step forward, it’s a step back, [it’s] two steps forward,” he said. “It’s not completely haphazard, but it’s certainly not a consistent story.”
That points to larger issues, says Sara Rosenbaum, who teaches health law and policy at George Washington University.
“In trying to implement Olmstead, you then suddenly see the problem for what it really is: the problem is there aren’t enough services. There’s just not enough skilled care,” she said.
Rosenbaum says Olmstead was a transformative civil rights decision along the same lines of Brown v. Board of Education.
But the more time passes, the more Olmstead exposes holes in the American health care system.
“We do not have a long-term services and support system in this country,” Rosenbaum said. “Whether it’s a family with a child who needs complex care or whether it’s an 85-year-old woman trying to stay in her own house.”
Georgia’s Department of Behavioral Health and Developmental Disabilities says much has changed since Olmstead.
In a written statement, the agency said it’s launched several initiatives to build that workforce, including offering specialized nursing training.
“Developing a competent workforce to serve individuals with behavioral health challenges and intellectual and developmental disabilities is a key focus for DBHDD as we embrace an ever-evolving health care environment,” the agency said in a statement.
In the meantime, people like Lisa Archibald fill those gaps. She stretches herself thin to care for her brother, John-David Mixon.
Back at her home, Archibald walks past stacks of cardboard boxes filled with medical supplies into what used to be her living room. Now, it’s got Mixon’s hospital bed, his IV stand and a shelf full of supplies.
She says she never intended to be her brother’s full-time caregiver, but people don’t always get to choose what paths their lives take.
“I do it because I love him,” Archibald said. “He is a person who absolutely deserves the same things that everyone else does.”
Note: This report and the audio story have been updated for clarity.