Advocates ask: Where will mentally ill go when group homes turn them out?

by Jordan Green


Staff members at Forsyth Village Assisted Living are uncertain about the facility’s future as the NC Division of Medical Assistance threatens to cut off monthly Medicaid reimbursements for residents, many of whom are diagnosed as mentally ill.

A spokesman confirmed on Monday that the NC Department of Health and Human Services notified the adult-care home, which is located on Lansing Drive on the outskirts of northeast Winston-Salem, that all residents will lose Medicaid benefits after Sept. 1 because the facility has been deemed an “institute of mental disease” unless it reduces its mentally ill population to under 50 percent.

“There are some very serious consequences if Sept. 1 rolls around and they are not in compliance,” spokesman Brad Deen said. “We will terminate the Medicaid benefits of everyone who lives in that facility because Medicaid benefits cannot go to an institute of mental disease according to the federal regulations.”

About a dozen residents lounged in front of the facility on Monday afternoon. Jay Martinez, facilities manager for the adult-care home, said he was not authorized to comment. Another employee, who did not give her name, said staff members don’t know what will happen next, and that many residents were not equipped to live on their own.

Deen said a consortium of adult-care homes that had been notified that their Medicaid funds would be cut off obtained an injunction to stop the state agency from carrying out enforcement of the federal Medicaid regulation.

The state agency’s review of adult-care homes across the state and action to cut off Medicaid payments to those whose population of individuals with mental illness diagnoses exceeds the allowable threshold is a result of a federal mandate handed down from the Centers for Medicare & Medicaid Services.

“This is their rule,” Deen said. “They have been telling us about this for some time, that North Carolina is out of compliance with federal Medicaid rules. Now they are requiring us to be in compliance. That’s why this is happening.”

The state is under pressure from both the Centers for Medicare & Medicaid Services and the US Justice Department to  stop housing people with mental illness in adult care homes.

The factors that set the current sequence of events in motion are helpfully outlined in a PowerPoint presentation created in March that’s posted on the NC Department of Health and Human Services website: The Americans with Disabilities Act of 1990 outlawed discrimination against people with disabilities, including the mentally ill. Federal regulations based on the law require that public agencies administer services in “the most integrated setting,” which is defined as one that “enables individuals with disabilities to interact with nondisabled persons to the fullest extent possible.” Then, in 1999, the Supreme Court ruled in Olmstead v. LC that public agencies must “provide community-based services to persons with disabilities.”

Disability Rights NC, a nonprofit that advocates for people with disabilities, filed a complaint with the US Justice Department based on an investigation that included visits to 15 large adult care homes across the state, including Reynolds Village in southeast Winston-Salem, in May 2010.

“The interviews and on-site visits confirmed our fears that the state is warehousing scores of individuals with mental illness in unsuitable and dangerous institution-like facilities, where they lack appropriate care and treatment,” the complaint reads. “Located in remote settings with inadequate staffing, few activities and diversions, and no opportunities for community integration, these institutions are wholly inadequate and illegal. If the principles embodied in the Americans with Disabilities Act and articulated in Olmstead are to have any meaning for the unfortunate individuals forced to live in these facilities, the state of North Carolina must make a concerted effort to create more humane options for the residential care of those with mental illness.”

The Justice Department followed up with its own investigation, visiting adultcare homes in Greensboro, Wilkesboro, Durham, Wake Forest, Cary, Wilson, Rocky Mount, Louisburg, Kannapolis and other communities.

Thomas E. Perez, assistant attorney general for civil rights at the US Justice Department, concurred with Disability Rights NC, writing NC Attorney General Roy Cooper last July: “Even though adultcare homes are not appropriate settings for persons with mental illness and state law prohibits the admission of persons to adult-care homes for the treatment of  mental illness, the facilities have become a major part of the state’s mental health service system. Thousands of people with mental illness receive services in adult-care homes — although they could be served in more integrated settings — because there are few communitybased options.”

Perez concluded that the state of North Carolina “unnecessarily segregates persons with mental illness in institutional adult care homes,” in violation of the Americans with Disabilities Act.

“We’ve known for over a year that the IMD issues was a critical problem, but the state is ill prepared to handle it,” Vicki Smith, executive director of Disability Rights NC told YES! Weekly. “The tragedy is both in the current situation and as a result of this loss of Medicaid dollars the most vulnerable are suffering. The real tragedy is the state should have never been relying on this as a solution. The adult-care homes were receiving the payments from Medicaid, so there was no incentive to do anything else. It was like this was a dead-end placement.”

Advocates for the mentally ill, homeless and poor worry that people with mental illness diagnosis have nowhere to go as privately run adult-care homes turn them out. They wonder if they’re going to land at shelters, or go off their medication and wind up in emergency rooms.

“What we’ve heard is happening is either the adult-care homes are moving people between different adult-care facilities, or sometimes we think they’re telling the guardians to come take that individual,” said Denise Neunaber, executive director of the NC Coalition to Prevent Homelessness. “Sometimes it appears that the individual is leaving on their own. They tell them: ‘If you stay here, you’re going to lose your Medicaid.’ “We’ve heard stories of a van coming from another facility and picking them up,” she added. “We’ve heard a couple accounts of people coming into a shelter. A lot of times it’s not direct. They might try to go to friends and families and then it doesn’t work out, and they end up in a shelter.”

The state has completed its second round of evaluations, and Smith said about 15 facilities have been flagged as having resident mixes above the acceptable threshold.

Deen said Forsyth Village is the only facility in Forysth County that has been deemed to be out of compliance, and no adult-care homes in Guilford County are on the list.

“We called the facilities and notified the residents and their legal guardians — if they have a legal guardian on file,” he said. “We take that very seriously.”

The Department of Health and Human Services counts 5,792 people with mental illness diagnoses living in 287 adult care homes across North Carolina. Guilford County has the highest number of people, with 328, while Forsyth has 258. Contrast that with Mecklenburg and Wake, the counties with the largest overall populations, which have only 192 and 181 individuals with mental illness diagnoses respectively living in adult care homes.

Deen said the technical specifications on what constitutes a facility are unclear considering that some homes might share management, dining services and clinical support, so he could not rule out that facilities in Guilford and Forsyth counties might yet receive notice that their Medicaid funds were in jeopardy ahead of the Sept. 1 deadline.

The Department of Health and Human Services’ PowerPoint from March states the tough situation facing mentally ill people living in group settings in plain terms: “The [adult-care home] may decide to discharge those residents for whom Medicaid and Medicare fund ing will not be provided to avoid being classified as an [institute of mental disease]. Conversely, [adult-care homes] that are [institutes of mental disease] will no longer be able to rely on Medicaid and Medicare funding for any of their residents.”

A constant and unanswered question arises any conversation about the dilemma with advocates: Where will they go?

The department acknowledges, “There is a lack of adequate housing available to meet the resulting increased demand for community-base care based on the [Centers for Medicare and Medicaid Services] requirement.”

Alex Dagenhart, business manager for the Danby House by Meridian assisted living center in Winston- Salem, laughed when asked if the state has informed adult care homes of a plan for transitioning people with mental illness diagnoses into the new community settings.

“You’re kidding, right?” he said. When the question was put to Brad Deen, the spokesman for the Department of Health and Human Services, he took a deep breath and chose his words carefully.

“We are working with our partners — advocates, DSS agencies, local management entities, anyone in the community with an interest in the welfare of this demographic — to do what we can to make sure the people we are responsible for are appropriately housed,” he said. “We do know there are systemic issues, but we’re confident that by working together those obstacles can be overcome.”

Dagenhart and Audrey Kazer, co-owner of the Salem Terrace assisted-living center in Winston-Salem, said referrals for people with mental illness diagnoses received by their respective facilities have been higher than usual in the past month.

“I’m assuming those are people coming from other assisted-living places,” Dagenhart said. “And they ended up in the hospital, and when they tried to return to the assisted-living center, whoever it may be said, ‘We can’t take them back because it’s beyond our scope.’ We were rarely getting referrals from Greensboro. Now, we’re getting them nonstop. It’s kind of crazy, to be honest.”

Doug Allred, spokesman for Cone Health, was unable to respond by press time to an inquiry about referrals.

Todd Clark, director of behavioral health services at Forsyth Medical Center, said it’s not uncommon for the hospital to admit people to the emergency room who had previously been in adult-care homes. They have a name for holding on to patients who have been successfully treated but have nowhere else to go: “boarding patients.”

“ED is supposed to be a stitch-and-go department,” Clark said. “We’re able to triage. We’re seeing someone within 20 minutes…. They could sit for a day until we find a placement for them. We’ve got three social workers who are working 24 hours a day on that.”

The hospital is averaging three or four patients a day — sometimes as many as six — who have been treated, but are still occupying beds because no one else will take them in.