North Carolina’s forgotten residents

Most citizens, even concerned ones, don’t understand where people with mental-health challenges go—as in live, manage their lives, hang out. Why, of course, they live with their families, right? Nope: Many don’t. Neither do they vaporize when the sun goes down.

In North Carolina, most adults with severe and persistent mental illness are not homeless but rather live in privately owned “family care homes.” According to the state Division of Health Service Regulation, there are about 750 adult-care-home beds in Buncombe County, and they’re mostly filled.

But statistics don’t begin to convey these residents’ everyday experience. Mostly they share a bedroom with two or three other people; to get a single-person room, you have to travel far, far out into rural N.C.—miles away from any buses. So if you want to go anywhere at all, you are plainly stuck.

Mostly what happens in the family-care homes is that the residents are forgotten. Lacking transportation, they are isolated, and like the patients of the large mental hospitals of bygone days, they clean toilets, mop floors and endlessly rearrange their small number of personal items while watching TVs linked to cable systems (aka the “activities director”: State law requires TV to be available at least 14 hours a week.)

In the mid-1970s, the famous Wyatt v. Stickney case determined that people with mental illnesses couldn’t be kept without appropriate treatment that could enable them to become more independent. Subsequently, North Carolina’s family-care-homes law was passed—just in time to snare the folks now being released by the state hospitals’ psychiatric wards. Thus, people with mental-health challenges were sprung from the hospitals only to be devoured by the family-care homes (lest we ordinary folks be overrun by homeless people).

Created by the state’s ill-fated 2001 mental-health reform, Community Support Services was supposed to address this issue of fostering independence. Now, however, the state Department of Health and Human Services is clearly abandoning CSS. And the managers of these family-care homes have a vested interest in keeping their cash cows in their place.

The county departments of social services, meanwhile, are supposed to enforce state law, but if you file a complaint, you’ll get a letter from the Division of Health Service Regulation indicating that they “found no evidence” when they arrived in their official cars, wearing their official badges, to investigate. This is not a workable system, and we obviously need to revisit Wyatt v. Sitckney as it pertains to North Carolina’s family-care homes.

Residents receive disability checks in varying amounts, depending on which Social Security account they’re linked to. If the disability started at age 19, it could be the father’s account. Or it could be the now-disabled person’s own Social Security account, which they vested by working for decades—just like you—before filing for disability.

The law concerning family-care homes is detailed to the point of specifying how much protein should be part of residents’ daily diet; who can take them where; who gets their toenails clipped and under what conditions; what are the visiting hours—and what happens to their spending money. But the departments of social services see only what they’re allowed to see, and they are, after all, part of the system. Residents, meanwhile, don’t generally complain, because they’re vulnerable to angry retribution by the management—which often illegally mixes the patients’ money with the institution’s own funds.

Some family homes are cleaner than others, and some have better food. According to the law, patients are supposed to be in control of what food is put in front of them, and menus are supposed to be posted a week ahead of time. They never are. Sometimes the food runs out entirely, and the residents eat cereal—or nothing—for several days.

The diabetics suffer the worst. Most seasoned residents learn to stash food in their rooms to get them through these lean times. Meanwhile, outside, the trash sometimes spills out onto the road, because the trash pickup is private, and one is told that “the money ran out.”

I’ve always wondered how that could be, if—as per the “personal finances” page in every resident’s chart—they’ve signed over their dependably mailed disability checks to the family-home management. Along with the remaining funds promptly delivered by the local department of social services, those checks are designed to cover the approximately $1,280 per month, per resident, cost of housing and food and occasional transportation.

But then I tend to ask an awful lot of questions, such as what happened to the “spending money” that should be coming back to the residents—which represents their ability to interface with the larger world. Absent that ability, the residents appear to be right back where they were in the wards of the old psychiatric hospitals: They have no rights.

[Asheville resident Marsha V. Hammond, a licensed clinical psychologist, writes about N.C. mental-health reform on her blog, http://madame-defarge.blogspot.com.]