Housing the mentally ill in North Carolina: Challenging the default setting

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Candler home featured in report prompting U.S. Department of Justice to question how N.C.’s mentally ill are housed

Photo illustration courtesy of Stock.XCHNG

In the spring of 2010, Disability Rights North Carolina, a protection and advocacy group, contacted Whitman Wright and asked if a group of college students could visit Canterbury Hills Adult Care Home in Candler, one of the seven adult care homes he owns in North Carolina.

Wright agreed. He thought the students wanted to see how Canterbury Hills operated. Although Canterbury Hills is a licensed adult care home with a capacity for 99 elderly or disabled residents, the home houses 90 to 95 mentally ill North Carolinians. It is one of the largest private facilities to house the mentally ill in the state, he said. And Wright had nothing to hide.

“We have residents no one else wants,” Wright recently told Carolina Public Press. “This is a group of people that have been ignored by the state for years. And it’s probably because these patients can’t vote. They’re voiceless.”

But in in its public letter to the state, the U.S. Department of Justice said [PDF] the state chronically mishandled the placement of mental patients in adult care homes, while inappropriately labeling adult care homes as “community settings” for the mentally ill.

Page one of the U.S. Department of Justice's letter to North Carolina regarding the housing of the state's mentally ill in adult care homes. The entire 16-page report is downloadable within this post. Click to view full-size image.

According to the state’s Department of Health and Human Service’s website, adult care homes are defined as “residences for aged and disabled adults who may require 24-hour supervision and assistance with personal care needs. People … typically need a place to live, some help with personal care (such as dressing, grooming and keeping up with medications), and some limited supervision.”

In theory, and in law, these homes are for the aged or physically disabled, but in practice, they have become ersatz care homes for North Carolina’s mentally ill.

Facing a potential lawsuit, the state has now threatened to remove an estimated 1,200 mentally ill residents currently housed in 52 adult care homes, possibly leaving them – including residents at Canterbury Hills — without a home.

‘Scathing’ report brings attention

The problem lies partially in language: For a mentally ill person, an adult care home meets the definition of an institution, and according to the Americans with Disability Act, the mentally ill have a right to live in less restrictive community settings, like state-funded group homes for developmentally disabled adults.

But since the Mental Health Care Reform Act of 2001 passed into law, the state has turned a blind eye to the placement of mentally ill residents in these homes, a regulation process controlled by the Adult Care Licensure Section of the N.C. Division of Health Service Regulation.

Now, according to the 2010 N.C. Institute of Medicine’s Interim Report to the N.C. General Assembly, 6,435 mentally ill adults are inadequately housed in adult care homes throughout North Carolina. That’s one quarter of the 24,040 residents living in adult care homes.

At this time, the exact number of adult care homes in Western North Carolina affected by the Department of Justice’s reprimand, and the number of mentally ill in those homes, is unknown.

Wright’s home is one of the facilities coming under scrutiny. Weeks after Wright showed the students from Disability Rights NC around his facilities, he received a letter in the mail.

“It was a scathing report about my facility, and it was full of lies,” Wright said.  “I wrote a letter back full of corrections.”

The group that visited Canterbury Hills included UNC – Chapel Hill law students. They had chosen to profile Canterbury Hills and 14 other adult care homes with mentally ill residents as part of an eight-month investigation into the state’s misuse of adult care homes as makeshift institutions for Medicaid-funded mentally ill residents. Read the group’s entire complaint to the U.S. Department of Justice here. [PDF]

The Department of Justice responded with its July 28 letter, reprimanding North Carolina for this practice. The Department of Justice also led their own investigations of North Carolina’s adult care homes at the beginning of this year.

Facing a potential lawsuit, the state threatened to remove residents, a move that has yet to happen. The state may also label adult care homes with primarily mentally ill populations as Institutions for Mental Disease, thus removing Medicaid dollars for any resident between the ages of 21 and 65. Currently, the state is conducting assessments of adult care homes, which they will provide to the Department of Justice.

Adult care homes: scapegoats, making money or filling gaps?

The Department of Justice’s letter made national headlines, but it made Wright angry. He believes Canterbury, and other adult care homes that provide a home for the mentally ill, are the scapegoats in the General Assembly’s decade-long struggle to redefine mental health care in North Carolina. Most mental health advocates agree the problem is a lack of state-funded beds for the mentally ill.

According to the National Association of Mental Illness-NC, there were 639 mentally ill North Carolinians waiting for a bed assignment at an institution in any given month last year. Those who did get a bed had to wait, on average, 2.77 days. Earlier this year, the closing of the Dorothea Dix Mental Hospital in Raleigh further reduced the number of institutional beds and left North Carolina with three state mental hospitals: Broughton; Central Regional, in Butner; and Cherry, in Goldsboro.

But the shortage of beds officially began in 2001, when the state passed the Mental Health System Reform Act, which emphasized deregulating mental health services. The act required local jurisdictions to “contract out” mental health care to private providers.

Enter adult care homes, such as Wright’s.

“First, the state has always allowed us to do this, even if they now say it’s illegal. We did not know North Carolina was acting illegally,” Wright said.

Wright said he has residents come from as far away as Wilmington. Many of Wright’s peers refuse these types of patients because they can be dangerous and difficult to house. But for many families, an adult care home is the cheapest solution for care. Wright estimates that one of his residents receives $50 of Medicaid payments per day. When compared to the cost of jail or emergency rooms, the other places a mentally ill person can end up, Wright said he believes adult care homes are a bargain.

Vicki Smith, the executive director of Disability Rights NC, believes that people like Wright may have understood that taking in mentally ill residents was standing operating procedure in North Carolina; the state wasn’t enforcing licensing requirements.

But she doubts adult care home directors didn’t realize they did not have the correct licenses for a mental health care facility.

“They were never licensed to take in the mentally ill,” Smith said. “Adult care homes were never created, designed, or licensed to provide care for mental illness. Many ACH (adult care home) operators knew this was a fact and knew that this was a population that was not adequately served. They could make money and fill a gap.”

Default placement

The National Alliance for Mental Illness-NC, in their response to the Department of Justice’s letter, points out that adult care homes have been repeatedly taken to task by advocacy groups like Disability Rights NC for taking in mentally ill residents. Read their complete response here. [PDF]

The organization’s official position reads,  “…from 2003 to 2011 there were no fewer than five studies completed on the problem of co-locating individuals who have mental health care needs with the elderly in family care homes. The recommendations have been consistent: North Carolina needs more appropriate housing alternatives. And they have consistently been ignored.”

Smith said the state relied on adult care homes as a default placement for the mentally ill, but many of these residents would be fine in less institutional settings.

“Many of these residents would be able to live successfully in the community,” Smith said. “People say these residents end up in hospitals or jails, but if the state provided services, they could live in the community. They don’t have to go to jail.”

Smith said the state should be providing community services, like community mental health centers, therapy or in-home services.

Canterbury Hills started in the 1970s as a nursing home for the elderly. Seven years ago, Wright took over and noticed more and more mentally ill applicants. From his point of view, places like Canterbury Hills haven’t been compensated appropriately for their work with the mentally ill.

“We have no psychiatrists, no raises for our staff, no cost of living increases from the state,” he said. “We are also the victims here.”

Canterbury Hills is a large adult care homes in Western North Carolina, but there are many smaller facilities that take in the mentally ill in each county in the region.

Debra S. Pratt owns and operates Country Meadow Rest Home in Hendersonville. Her adult care home is only licensed for 15 residents, and though most are elderly, some are mentally ill. Pratt would not describe the demographics of her home, but she thinks she should be able to house these residents, especially because she carefully screens each one.

“This is as a family oriented place, so I have to be really careful based on the person’s diagnosis and how they interact with my elderly,” Pratt said. “We keep it quiet here. Everyone feels like family.”

Wright also said residents are happy when they return to his facility, especially when they’ve been in and out of hospitals and group homes that have failed to provide they level of care they need, at a cost they or their families can afford.

“All roads lead back to Canterbury,” Wright said.

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About the Author

Stephanie Soucheray

Stephanie Soucheray is a contributing reporter for Carolina Public Press. Contact her at stephanie.soucheray@gmail.com.

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