Kannapolis woman says independent living was bad fit for sick brother

James Clark had digestive and breathing problems that required repeated hospitalizations and had frequent panic attacks that sometimes lasted for hours. In 2014, he moved out of an assisted living facility and into an apartment under a state program that helps people with mental illnesses live independently – despite indications from a psychological exam that he was not a good candidate.

He died about a year later at age 66. While the illness that caused his death preceded the new living arrangement, his sister, Terri Clark, said she never wanted her older brother to leave the assisted living center, and the problems he had adapting to living alone reinforce her view that it was a mistake.

Not everyone is able to live independently, even with help, she said.

“They were not able to fulfill his needs and he was not able to fulfill what they thought he could do,” she said.

Nicole Sherrill-Cory, the community support worker assigned to James Clark, agreed: “He should have stayed in the assisted living,” she said. “He couldn’t live on his own.”

Behind schedule

James Clark was one of the 850 people who gained housing under the state’s Transitions to Community Living program. North Carolina started the program under a 2012 court settlement with the federal Department of Justice after the state was found to be in violation of the Americans with Disabilities Act because it segregated people with mental illness by placing them in adult care homes. The federal investigation quoted residents of adult-care homes who said they felt trapped in restrictive conditions with no say in how they spent their days.

The Department of Justice, using lawsuits and threats of lawsuits, pushed North Carolina and other states – including New York, New Jersey, Georgia and Texas – to give people with physical or mental disabilities the proper support to live independently, participate in community activities, and find jobs.

In its settlement, North Carolina agreed by 2020 to provide at least 3,000 housing slots, where people could live in communities rather than institutions, and provide them with mental health services. The state was also required to expand a particular type of intensive mental health treatment called assertive community treatment, to make it capable of serving 5,000 people by 2019.

The state is not on pace to meet most of the settlement requirements. For example, it has provided 850 housing slots so far, but the agreement said it should have had 1,166 by now.

The state has relied on regional government mental health organizations to go into nursing homes to find people interested in moving out and capable of living outside institutions. They also coordinate assistance for people living independently. Clark lived in the region covered by Cardinal Innovations Healthcare. Cardinal worked with other companies, including contractor RHA Behavioral Health Services, to move Clark to his apartment and provide his care.

Jack Register, executive director of the North Carolina chapter of the National Alliance on Mental Illness, a mental health advocacy group, said his organization gets steady complaints about people being discharged too soon or moved to housing that’s not good for them.

The official explanation is the client wants to move, Register said. “They’ll go back to client choice even if it’s not the most expedient clinical move.”

The state Department of Health and Human Services, which oversees the program, denied requests for interviews but responded with a written statement and answers to questions.

“This initiative provides long-term housing stability and promotes a reduced reliance on crisis services and hospitalizations,” the statement said. “To date, more than 850 individuals have made the choice to find living accommodations that offer more independence, and we join in their celebration of enhanced opportunities and self-direction. We are particularly proud of the expansion of Assertive Community Treatment, supported employment and tenancy supports as a result of this initiative.”

Eager to move out

Progress notes recorded by mental health workers assigned to Clark say he was initially reluctant to consider leaving assisted living but was later eager to go. He relentlessly questioned counselors about progress they were making toward getting him moved. Terri Clark provided copies of the records, which included workers’ notes before and after her brother left assisted living.

Clark underwent a psychological assessment in July 2014. He was eager to learn the results, according to the counselors’ notes. But then the report came back with discouraging findings.

“Psych evaluation completed,” says the progress note dated Aug. 12, 2014. “James does not appear to have skills necessary to stay in independent living. This could impact participation in housing program.”

An entry in an Aug. 15, 2014, note refers to “the rather negative findings that suggest independent living may not be reasonable outcome. Presence of dementia is likely too strong and he will need assistance. Discussed the option of providing this kind of assistance, noting that he will only be able to stay in an independent setting for an unknow(n) number of years, though this may be a goal that we’d find desirable – living with help for 2-3 years may be a modest success.”

A progress note dated August 21, 2014, said that there were no medical reports that diagnosed Clark with dementia, other than the psychologist’s evaluation, and that state guidelines “compel placement efforts.”

Plans to move him continued, and in late August 2014, Clark told a community support worker he was happy knowing he would soon move and was eager to “get away from ‘death derby’ assisted living facility in order to be free.” He often complained that the team working to find him an apartment wasn’t moving fast enough.

A health assessment from February 2014 showed that Clark’s problems included chronic obstructive pulmonary disease – later found to be the primary cause of his death – high blood pressure, gastroesophageal reflux disease, arthritis, diverticulitis, anxiety disorder, and a condition called aerophagia, or air-swallowing.

Health conditions don’t disqualify people from the chance to live independently, said Corye Dunn, director of public policy at Disability Rights North Carolina. Doing so would be discrimination, and a violation of the Americans with Disabilities Act.

DHHS is confident people are properly screened, the agency said in an email. “This process includes an in-reach and Transitions assessment in addition to a comprehensive clinical assessment. Each person who transitions to community living also has a person-centered plan which they are involved in developing,” the department said in an email.

“In-reach” is done by people working for the local mental health agency who go in to institutions to talk to residents covered by the federal settlement about the possibility of living in the community.

Clark battled severe anxiety, with attacks routinely interrupting conversations with counselors. Sometimes he would leave the room to vomit.

Counselors taught him control techniques such as deep breathing, breathing through his nose, hand massage and counting. He took a drug that is prescribed to control anxiety and depression, along with a half-dozen prescriptions to treat physical illnesses.

Terri Clark said her brother moved to assisted living after failing to properly care for himself while living on his own. Before he moved to assisted living, he started a fire in one of his apartments, and the manager would not renew his lease.

It’s somewhat common for family members to resist having their relatives moved from adult care homes, but in Clark’s case, one of his support workers also didn’t think he should have moved.

Sherrill-Corry, the RHA support worker assigned to Clark, worked with him in the assisted living facility and after he moved.

Clark had an anxiety attack on moving day, Sherrill-Corry said, and she sat with him for hours in the bathroom as he gasped for air and vomited. Sherrill-Corry said she wanted to call 911, but was told not to by a worker with Cardinal Innovations because Clark would lose his apartment if he went to the hospital. Cardinal Innovations declines to comment on specific cases.

Once in the apartment, Clark refused to learn about healthy eating, Sherrill-Corry said, and wanted to use his money to buy cigarettes. Clark smoked while in assisted living, too, even though counselors stressed the importance of quitting because of his COPD.

“He knew he couldn’t smoke; he did it anyway,” she said. “His eating habits were poor. James could not cook for himself.”

Counselors’ notes after Clark moved are full of observations that his diet worsened problems with his digestion. He spent weeks in the hospital in 2014. After living on his own for about a year, he was admitted to a Concord nursing home, where he died.

Martha B. Knisley is the independent monitor the state was required to hire to monitor its progress in meeting its goals. Knisley said she could not talk about Clark, but has seen or spoken with about 170 people in facilities or who have moved into houses or apartments as part of her job.

“The selection process is quite comprehensive,” Knisley said, and involves discussions with health care providers and family members or guardians. Moving then takes months, and Knisley said she had never seen someone pressured into leaving an institution.

People with difficult medical conditions can do well on their own, Knisley said. A 58-year-old man with “every conceivable medical condition you could have” and psychotic depression from alcohol abuse got sober and moved from a hotel into a house. “He was happy as a clam,” Knisley said, and was able to re-establish a relationship with his daughter.

In a progress report published last year, Knisley wrote that “a number of individuals were isolated in their apartments.” She said in an interview that they preferred apartment living to adult care, despite the isolation.

Mental health systems get around to working on “the social or personal aspects in a person’s life,” which Knisley said “ are as important as the clinical.”

This story was originally published August 4, 2016 at 3:50 PM with the headline "Kannapolis woman says independent living was bad fit for sick brother."