In transition to independent living, the ‘dignity of risk’ for the mentally ill
By Stephanie McCrummen
December 27, 2014
Kelvin Cook sits near his television shortly after getting cable installed at his apartment in Concord, N.C. He was given the opportunity to live on his own as part of a 2012 settlement between the Justice Department and the state of North Carolina, which agreed to move at least 3,000 people with serious mental illnesses into independent living by 2020. (Matt McClain/The Washington Post)
CONCORD, N.C. — On his 26th morning of independence, Kelvin Cook made a huge pot of coffee and ate oatmeal off a plate. His Social Security check had not arrived and he was down to $5. He had a cellphone plugged into a wall, but it was out of minutes. Rent was overdue. He was out of his five prescriptions, including the anti-psychotic that had suppressed the symptoms of his schizophrenia for the past year, and now he felt sluggish.
He rolled his wheelchair into the kitchen and poured himself another coffee. Day by day, he was trying to let go of all that had come before now — years of psychiatric hospitalizations, sleeping on streets, hearing voices, seeing “ghosts,” shelters, a suicide attempt and, most recently, an adult home where, for the first time, he thought he might have found stability.
Thirty-three years old, he was now trying the next step, to live on his own.
He looked around his new two-bedroom apartment in suburban Charlotte, all blank white walls and empty except for a blue couch, a bed, two side tables and a TV with no cable. He poured another cup of coffee. “Oh, man,” he sighed.
What he had learned in his first 25 days: He didn’t know if this was going to work out.
But what he also knew: Here was his chance. This bare-bones place, the result of decades of lawsuits, legislation and a 1999 Supreme Court ruling, known as the Olmstead decision, that found it discriminatory for states to segregate people with serious mental illnesses in psychiatric institutions if they were willing and able to live more independently in the community.
Recently, the Obama administration has been trying to aggressively enforce the ruling in 24 states where efforts were thought to be lagging, potentially affecting tens of thousands of people. One of those states was North Carolina, which agreed in a 2012 settlement with the Justice Department to move at least 3,000 people with serious mental illnesses into independent living by 2020, as long as they wanted to move. No one could be disqualified from trying, including people who might be actively delusional, or who even might deny having a mental illness, provided that their safety and that of the community would not be compromised. “The dignity of risk” is how one Justice Department official described what the settlement aimed to give people who had been institutionalized, and this was why, earlier this year, Kelvin found himself talking to a woman who handed him a pamphlet explaining his civil rights.
At the time, he was living in an adult care facility called Country Home. The woman said that she was from an organization helping to move people like Kelvin into their own apartments. She said that living alone wouldn’t be easy, especially for someone who was both mentally ill and in a wheelchair because of cerebral palsy, but that there would be people to help him. She said that despite his history of schizophrenia, despite everything that had resulted in his being in Country Home, he had a right to be in charge of his own life. Did he want to try?
He wasn’t sure. To him, independent living had meant sleeping by a Dumpster, emergency room visits, drug abuse, hallucinations and isolation.
But part of him was also terrified of not moving forward. He wanted to have a job, a family, a life. And so he said yes, and a team of people that included clinicians and social workers began developing a transition plan:
“Kelvin will .?.?. develop necessary food preparation skills .?.?. be medically healthy by having access to medical health services .?.?. role play job skills .?.?. purchase a new home by increasing financial management skills .?.?. increase recovery skills to address symptoms of Schizophrenia .?.?. take medication as prescribed .?.?. increase independence.”
Asked to describe his needs, Kelvin wrote that he needed a detachable shower head. He needed help grocery shopping. Help organizing bills. Help with cooking. Help with his medication, without which he was at greater risk of the gradual disintegration of personality that clinicians call decompensation, and which he experienced as a kind of gravitational pull toward confusion.
On a line asking him to list warning signs that he was becoming ill, he wrote: red eyes, headache, stomachache, depression, hearing voices. On a line asking for “input about self,” he responded: “very courageous.”
Now, on day 26, he sighed again and rubbed his forehead, waiting for his support worker to arrive and help him sort out all the complications piling up, the sort of daily minutiae he didn’t have to deal with at Country Home. He had thought that by now things would be going more smoothly.
He waited some more. He was never quite sure when to expect Corey Ready, whose job was to provide one to two days of support each week, for two hours each day, which was supposed to taper off after three months as Kelvin became ever more self-reliant.
He poured another coffee. About 10:30 a.m., Corey arrived, and they began sorting out why Kelvin’s bank was telling him he had no money.
“Where’s the card at? The debit card?” Corey began, telling Kelvin to call the number on the back of the bank card. Kelvin told Corey that he couldn’t call because he’d been out of minutes on his cellphone for four days.
“I can call,” Corey said.
“I’m getting a land line .?.?.” Kelvin said while Corey was on hold with the bank. “So y’all can get a hold of me.”
“And you’re going to pay $154 a month to Time Warner for phone, cable and Internet?” Corey asked. “You got to think, man. You got to write things down. Remember you still got to pay rent, you got a late fee, you got groceries .?.?.”
“You’ve got to learn you don’t have to rush, man,” Corey continued. “These are your decisions.”
“I know,” Kelvin said.
“I’m here to help, but you got to think,” Corey said.
“I know,” Kelvin said.
He was trying to think but there was so much to keep track of now. As organized as Kelvin’s transition plan was to the people who created it, how it all felt to Kelvin was random, even down to who would show up when. Sometimes Corey stopped by. Sometimes a woman named Valerie stopped by. There was L’Oreal. There was Ericka. There were Julie, Marilyn and Chad. Before his minutes ran out, there’d been a call from Margaret.
“Margaret called and said I’ve got a training course next Thursday,” he told Corey now.
“Who is Margaret?” Corey asked.
“I forgot her last name,” Kelvin said.
“You’ve got to remember this stuff .?.?.” Corey said. “Who’s going to take you?”
“I got to ask,” Kelvin said.
“You got to set up your transportation,” Corey said.
“That I can do,” Kelvin said, trying to stay positive.
“You’re sitting here, looking at the white walls,” Corey said, shaking his head.
“I got nothing but white walls,” said Kelvin, trying to laugh it off. “It’s all right, though.”
“You had coffee this morning?” Corey asked him.
“I had coffee,” said Kelvin, and he rolled back into the kitchen, bumping through a doorway that was too narrow for his wheelchair. He poured his fourth cup.
He pulled his medications out of a drawer — five tinfoil sheets of prescriptions including one for psychosis, one for anxiety, two for depression and one for symptoms associated with cerebral palsy. The sheets were empty except for two pills.
“Okay,” Kelvin said, spreading the empty sheets in his lap. “I got one left of that one .?.?.”
When had the others run out? Was it yesterday? The day before? How long had he been without his medication? He couldn’t remember.
He took the last two pills, and Corey drove Kelvin to his new pharmacy to get refills. Come back in a few hours, the clerk told him.
“Thank you,” Kelvin said, worried that the headache he was getting might be a warning sign.
They drove to the Division of Social Services to see about emergency rent money. “Go in there and take a number,” Corey said.
“Where’s the numbers?” Kelvin said once he was inside, staring at a red ticket dispenser, which appeared to be out of tickets. He shook it. A woman opened it, unstuck the tickets inside and handed him one.
“This is crazy,” Kelvin said under his breath.
It was late afternoon by the time they returned to Kelvin’s apartment complex. He rolled himself down the sidewalk to his building, an old brick cotton mill converted to apartments in the 1970s. He opened the outside door, a heavy metal gate with vertical bars, and wedged his chair in. He rolled across the stained carpet in the long, dim breezeway to his apartment. He unlocked his door and went inside.
He put away his groceries. He smoked a cigarette. There was a knock at the door. It was Corey, who’d gone back to the pharmacy and now had Kelvin’s medications. Not all of them — the pharmacy was out of the anti-psychotic — but at least he had four of the five.
“I’m going to make this simple for you .?.?.” Corey said. “Every med you got you take tonight. All of these are tonight.”
Usually, Kelvin thought, he took only three medications at night, not four. He took all four.
“It’s all you now,” Corey said, heading out.
“You coming back?” Kelvin asked.
The first time Kelvin had tried living on his own, he was 18 years old in Davenport, Iowa, where he had grown up. He was already in a wheelchair by then but his mental illness hadn’t show up, at least not in an obvious way.
He had been raised by a mother he adored and a father with a drug and alcohol habit. His mother, a high school English teacher, was his protector, he said.
“We were best friends, that’s what it was like,” he said, smoking one of the five cigarettes he allowed himself each day, waiting for the next support worker to arrive. “She’d say, ‘Kelvin, you’ve got to let things happen for themselves. Don’t rush things, but you’ve got to make an effort. You’ve got to show up.?”
He tried to remember more of what she said to him but so much of his life since he was that 18-year-old had turned into a blur.
There was Davenport, where he’d had his own apartment, worked stocking shelves in a grocery store, had a girlfriend, drank and made what he called a lot of stupid decisions involving drugs. That was pretty clear in his mind.
There was Charlotte — fairly clear — where his mother moved when she became ill with kidney failure and cancer to live with his brother, and where he eventually followed. He remembers watching her get thinner and thinner, and hearing her tell him that he’d survive, that he’d always have his Social Security check and hers, too.
He remembers watching her die, and after that, things becoming less clear. He started a period he refers to as “traveling.”
He somehow took a train and a bus to Davenport to visit his father, staying in cheap hotels and homeless shelters and spending days at a bar his uncle ran called K.P. Hall. He remembers a woman calling him on the phone, saying his father had died. He remembers someone telling him to go to Mississippi to be near his sisters, and somehow taking a bus down there, and staying a week, or was it a month, or was it two months, he can’t recall, until they kicked him out for some reason he still doesn’t understand.
He remembers deciding to take a bus back to Charlotte, but something happened to the bus in Birmingham, Ala., and he had nowhere to go except a place he described as “an old, broke-down shelter.”
He remembers his ankles going numb around that time, and his fingertips being cold. He thinks maybe this was when he started hearing voices.
“I enjoyed it the first two days, I enjoyed the sound of it. I enjoyed seeing visions, the seeing things that weren’t there,” he says. “Then I was like scared. I thought I was seeing ghosts, having evil visions, hearing people calling my name, telling me where to go. I didn’t know what direction my life was going. .?.?. I felt desperate. I felt in need of help, but I didn’t know where to get it.”
He remembers passing out and being hospitalized in Birmingham for a few days, or possibly it was a few weeks, and then being back in the homeless shelter downtown. Did he have medication by then? He can’t recall.
He remembers spending weeks walking around a park in downtown Birmingham.
He remembers going back to Charlotte at some point, getting off a bus and spending the next months, or maybe it was years, bouncing among shelters, hotels and the street.
He remembers sleeping behind a Dumpster under a light.
He remembers sleeping in the woods.
He remembers sleeping by a bus stop.
“I remember one night, this man found me,” he says. “He was real nice. He said, ‘What the hell you doing in the woods?’ He said, ‘Come stay with me a few days.’ I told him I’m ill. I told him call an ambulance.”
He remembers telling people at the hospital, “I’m sick, I’m in the rain, I need attention, I need my medications,” and them wanting him to leave.
He remembers riding the bus for hours and a lady taking him to church.
He remembers being taken to the hospital for another few days or weeks and being discharged at 4:30 a.m., and begging the hospital to let him stay until 6 a.m., when the buses started running, and getting in a fight with a police officer and being in jail.
He remembers being sent to a North Carolina state psychiatric hospital, where doors were locked and people got into fights and which he calls “the scariest place I’ve ever been and a place I never want to go back to ever again.”
He remembers feeling like he was going to die soon. Not exactly like he wanted to die, but like it was going to happen, an inevitability.
“I felt like my life was over,” he said. “Like I had no way out.”
He remembers getting out of his wheelchair and lying down across some train tracks near Charlotte. He remembers a train coming closer and closer, and the blare of the horn getting louder, and finally seeing the conductor’s face in the front window.
He remembers galloping away on his knees as fast as he could.
He thinks what happened next is he that went back to Davenport. But maybe he stayed in Charlotte, because soon he was in a police car, and an officer was saying to him, “Now you can get yourself together and get back on your feet,” and he was being dropped off at Country Home.
“So I ended up there,” he says, and a few months later, the woman from Cardinal began talking to him about his civil rights, and getting his own apartment, and soon, he was the proud owner of a welcome mat, a 12-piece set of pots and pans, some dishes, sheets, towels, a shower curtain, a blue sofa, two side tables, a TV and a bed.
On the 27th day, Kelvin woke up groggy. The four medications he’d taken the night before had knocked him into a deep sleep, which was not what usually happened.
Corey showed up about 9 a.m., and they played a video game. He told Kelvin his $1,200 Social Security check had been deposited into his savings account, which he had to use for rent, utilities, a phone and groceries.
“Be aware — I’m buying a carton,” Kelvin told Corey on the way to the bank, referring to the cigarettes he’d been craving.
“That’s on you,” Corey said. “Smoke your life away. Just put that $150 for your lights and water aside so when it comes, you can knock that out.”
They pulled up to the bank and Kelvin went inside and to make a withdrawal.
The teller told him to slide his debit card.
“Which way?” Kelvin asked.
“Just turn it .?.?.” the teller said.
“Put in your PIN,” Corey said.
“Man, shut the hell up,” Kelvin said.
He withdrew $900, put it in his wallet, put the wallet in his pocket and patted his pocket. “I’m basically paying everything I can today,” he said.
They went to the cable company and signed up for cable.
They went to Wal-Mart and bought cellphone minutes.
They went to Food Lion and Kelvin got a carton of Newport 100s and a money order for rent, and then he wheeled down an aisle stocked high with sodas, Corey pushing a grocery cart behind him. It was the first time he had been grocery shopping in years.
“What do you want to drink?” Corey asked.
Kelvin stared at all the choices.
“Orangeade, Crush and grape,” he said, and they moved on to the meat cooler — beef oven roast, sirloin roast, beef cube steak, beef tips, chuck roast, London broil, beef stew.
“What kind of meat do you want? Ground round? Steak? See, these are already patted out,” Corey said, pointing out some hamburger patties.
“I’m not good at patting ’em out,” Kelvin said.
He noticed a package of chuck wagon beef and chicken patties.
“This is what they’d give us at Country Home,” he said, and moved on to poultry — boneless chicken, skinless chicken, boneless skinless chicken, split breasts, breasts with skin and bone.
In the checkout line, Kelvin rubbed his head.
“You want to go home?” Corey asked.
“No, I’ll be all right,” Kelvin said.
One more stop, Corey decided. They needed to track down Kelvin’s Medicare card, which the pharmacy had asked for the day before. Kelvin stared out the car window as they passed strip malls, fast-food restaurants and gas stations.
“Waffle House,” he said. “Never been there.”
The four-lane road became a two-lane that wound out toward the rural edges of the city, up a hill and past miles of piney forest. At last they arrived at a one-story red brick building, outside of which was a broken white sign bearing the name Country Home.
Kelvin got out of the car, and here came a red-haired woman in a leopard-print robe and slippers shuffling out of the front door, a cigarette dangling from her fingers.
“Ah!” Kelvin said seeing her, grinning broadly.
“Hey, buddy! How you doing?” she said, hugging him, and here came Jeff in a stocking cap and dirty trousers, his zipper undone, and Eric wearing a wrinkled yellow shirt and a blank stare.
“Hey!” Kelvin said. “How you all doing for real!”
Eric stared blankly.
“How you doing, Eric?” Kelvin boomed, trying to elicit a response.
“Doing good,” Eric finally said.
“We miss you,” Kim said.
“We miss you,” Jeff said.
“We miss you,” Eric said.
“I miss y’all,” Kelvin said, shaking his head and laughing as he looked over this collection of people, some with mental illnesses, others with various medical or physical needs. “I love y’all.”
“You like it over there, Kelvin?” someone asked. “You like your place over there?”
“It’s nice,” he said. “You know what? I’ve been paying bills and stuff, going to the grocery store, getting food .?.?.”
“You for real?” the leopard-robed woman said.
“You’d love it,” Kelvin said, and he wheeled himself inside, past the aid station where uniformed workers were handing medication in a cup to a frail man in a wheelchair; down the narrow, low-ceilinged hallway with a communal bathroom; past wallpaper brown at the seams; past doors half-covered with Christmas wrapping paper.
“They must’ve decorated,” Kelvin said. “Looks good.”
He rolled into the cafeteria, where an elderly man sat alone at a table. He had a black stocking cap pulled over his head, stubble across his face and missing front teeth. The man raised his head and broke into a smile.
“What’s been up, man?” Kelvin said to his old roommate, Claude.
Claude didn’t say anything.
“I’m in a good place, man,” Kelvin said. “It’s locked, it’s secure, it’s real nice. How you been doing, man?”
Claude continued to smile. Kelvin reached out and took his hand.
“You got any money?”
“No,” Claude said.
Kelvin took out his wallet and gave Claude $2, enough for a snack from the vending machine. “Man,” he said, looking around. “This place is lonely.”
“Kelvin!” yelled a resident named Susan. “Oh, I didn’t think I’d ever see you again!”
“Bless you,” Kelvin said.
“How you like it?” Susan asked.
“It’s real nice,” Kelvin said.
“I’m just trying to keep from killing somebody in here,” Susan said.
Kelvin laughed and shook his head and went to an office to see if they had his Medicare card. Come back another time, he was told, and so he left the office and went out to the screened-in porch to have a last cigarette with his old friends.
“Give me a dollar,” a woman in a robe and a red stocking cap said.
Kelvin ignored her.
“You back?” a woman asked after a few minutes.
“Just visiting,” Kelvin said, and when Corey called to him from the car he wheeled himself out through the muddy yard and they headed away.
Back at the apartment, Corey dropped Kelvin off. Kelvin opened the heavy iron gate and edged himself inside. He wheeled down the long breezeway to his door. He dropped his keys. He picked up his keys. He went inside.
After a while, his phone rang. It was Corey, back again, this time with Kelvin’s anti-psychotic medication.
“This is the only one I take in the morning?” Kelvin asked, trying to be sure he had it straight.
“Yes,” Corey said. “Morning.”
Later, Kelvin took the bottle out of the bag.
“Take one tablet every night at bedtime,” the label read.
“Bedtime’s not morning,” Kelvin said, confused.
He went to bed without taking any medications at all.
He woke up late and feeling awful. He made a huge pot of coffee.
“I don’t know if I’m excited, angry, confused, I don’t know,” he said. “I feel weak. It makes me uncomfortable not taking my medications. Makes me feel eerie.”
He knew that eventually he had to learn to handle all of this by himself. That’s what Corey told him. That’s what Margaret told him. That’s what L’Oreal, Julie, Ericka, Marilyn and Chad had told him. “You’ve got to show up.” That’s what his mother had told him.
He made his bed. He took a shower.
He had to pay his rent. He wasn’t sure how to fill out the money order. He couldn’t read the instructions. He needed reading glasses. He couldn’t find a pen.
“This world is not easy,” he said. “You can’t deal with it yourself. You gotta have somebody.”
Was Corey coming today? He wasn’t sure.
He poured some more coffee. He closed his eyes.
In the late afternoon, a neighbor knocked on his door. Cornelius Wilson, the building handyman, lived across the hall. He had been checking in on Kelvin since he moved.
“Got time to carry me up to the office?” Kelvin asked him.
He needed to pay rent. He needed help.
“Yep,” Cornelius said. “I can take you up there.”
“Can you help me take the trash out?” Kelvin asked.
“Yeah,” Cornelius said.
He went into Kelvin’s bathroom and got the trash can.
“You got them small garbage bags?” he asked Kelvin.
“No, I threw them out,” Kelvin said.
“You need to save those small garbage bags for your small trash,” he said.
“Okay,” Kelvin said.
He opened his refrigerator.
“Can you tell me if this looks old?” he said, holding an onion.
“Yeah, you throw that out,” Cornelius said.
“I’ve gotta have someone cook me these collard greens,” Kelvin said, staring at a huge bag of them. “I don’t know how to cook ’em.”
“I know how,” Cornelius said. Then he gathered the trash bags and the two headed outside and over to the rental office.
“Watch your hand,” Cornelius said as they went through the heavy iron gates.
In the office, a woman helped Kelvin fill out the money order.
“It’s been four years .?.?.” he said, signing his name. “It’s hard out here.”
“Okay,” the woman said. “This is your copy.”
Kelvin carefully folded the receipt and put it in an envelope and put the envelope in his pocket. His rent was paid. He had a little money in the bank. He had some minutes on his cellphone. He had all five of his prescriptions and now, back in his apartment, he was trying to remember what to do with them when there was no one around to help. “Two in the morning, three at night,” he said to himself, and that was day 28 of independence. Onto day 29.
If you’re in a wheelchair and trying to become more independent, there are lots of ways in which you can adjust your living arrangements to make life easier for yourself physically. You probably need to access a raised platform such as a step up to the front door, so why not try a wheelchair lift as an alternative to a ramp. They require less strength, and every little helps when you’re faced with challenges like those detailed in this account. Follow the link to see some options if you are interested in this option.