For those of us who have trouble convincing our adolescents that bathing is important, it might be hard to imagine a bathtub being at the top of a 12-year-old’s wish list. But one of Disability Rights North Carolina’s (DRNC’s) clients, Franklin, needed a new bathtub and his parents were willing to fight to get it for him. And they had to. For Franklin, the bathtub is so much more than a means to good hygiene: it promises a break from excruciating pain, and a way to gain back some of his independence.
Franklin has Muscular Dystrophy, a progressive degenerative disease that causes muscle weakness, spasticity, and loss of function. His condition makes it harder for him to do many of the things he used to be able to do easily.
Like any other 12-year-old, the last thing Franklin wants is to have to rely on his parents to bathe. Not only does he want more privacy, but he is weighs 180 pounds, making it increasingly impossible — and dangerous — for his father to lift him in and out of the traditional bathtub in their home. The family needed a needed a new system that would be safe for both Franklin and his parents.
Home modifications and CAP/C
Fortunately, Franklin has CAP/C, a Medicaid Waiver program that helps keep medically fragile kids at home with their families instead of pushing them into a hospital or other institution. The Waiver includes home modifications so families can make changes to their homes to support the needs of their disabled child.
After some research, Franklin’s parents and therapists found a walk-in tub with jets that seemed like the perfect fit. The tub would give him some privacy, allow him to bathe without as much help from his parents, and ease some of his pain. So they sent in an application for a bathroom modification to the NC Division of Health Benefits (DHB), the state Medicaid office that administers CAP/C services. The family was relieved to have a plan that would improve Franklin’s quality of life so dramatically.
However, to their dismay, DHB denied the request for the accessible bathtub. The agency approved the part of the plan that would widen the doorway so Franklin’s wheelchair and walker could fit through and the addition of an accessible toilet. But without the new tub, Franklin’s bathroom would still be inaccessible and unsafe for him to use. Franklin’s parents appealed the denial, but DHB tried to get the appeal dismissed. Franklin’s parents knew they needed help.
They contacted DRNC.
Appealing DHB’s decision
DRNC attorneys looked over the case and quickly saw that the denial was wrong for multiple reasons. DHB had ignored the language in its CAP/C Waiver and its Clinical Coverage Policy that govern the program. The denial said that the “replacement” of a tub was not allowed under the CAP/C policy. However, the plain language contained in both the CAP/C Waiver and Clinical Coverage Policy 3K-1 specifically allows for tub replacements when a doctor orders it.
After receiving DRNC’s opposition and motion, DHB immediately changed its mind and reversed its decision, approving the request for a tub replacement even before the judge had a chance to rule on it.
Franklin’s family encourages other parents and families to appeal denials if they do not think the decision is correct, because sometimes the denial is unjustified. You can appeal directly to the Office of Administrative Hearings (OAH) by yourself following these steps. Or, if you need help, you can contact an attorney. If you were previously turned down for a tub replacement under the CAP/C program, ask DHB for it again. They now know that tub replacement should no longer be categorically denied.
Construction is about to start to make Franklin’s bathroom accessible, complete with a walk-in bathtub that gives him as much independence and privacy as possible. For Franklin’s parents, it allows the basic daily safety their family needs. For their soon-to-be teenager, it provides the dignity and independence he wants and deserves.