Last Exit: Mentally Ill Teen Struggles to Keep Life Together in Adult Care Homes
Parker’s Family Care Home lies on a bleak dead-end road in rural Orange County, North Carolina. To reach this small group home you will pass an abandoned gas station, several dingy, overgrown shacks vaguely reminiscent of Walker Evans’ famous Depression-era photographs and large expanses of empty fields. Years ago, before the tobacco buyout, these fields, some 10 miles northeast of historic colonial Hillsborough, were prime tobacco land. Many now sit vacant, or serve as enormous setbacks for small ranch houses and trailers. Even in the middle of the day there is a sense of utter isolation. On the weekends the silence is temporarily broken by the sounds of rumbling motorcycle engines from the nearby motorcycle club. A mile up the road from the group home, adjacent to state highway 49, there is a small eutrophic pond, where catfish still swim underneath swarms of thick algae. This lonesome pond is one of the few places Jacob Bailey associates with good memories.
“When I get upset I can go down there,” Jacob says. “Sometimes I’ll lie and say I’m upset just so I can go down there and sit by the pond and look at the trees around it. It’s real nice to be able to walk down to the pond down the road just to see all that because when I think back about my past I don’t think about much that is good.”
Sitting by the pond, the 18-year-old remembers outdoor outings he used to make with his adoptive family. In his mind he’s plodding alongside the pond side by side with his father or casting bait into the still, murky waters with his mother who occasionally came along. For a brief moment he reconstructs his fragmented life.
Jacob’s nostalgia for his adoptive parents is a brief glimpse into a vulnerable mind and is in stark contrast to the persona he has created for himself. To strangers he describes himself as a gangster, hopelessly locked into the notorious Crip lifestyle of ritualized violence. He’ll describe what it’s like to kill a man. On his left arm he has tattooed what he says is a high level Crip symbol. Hundreds of times, he dipped a common thumbtack in blue ink from a Bic pen and plunged it into his bicep, until an amoeba-like shape emerged on his swollen and deeply irritated flesh. It represents his level 6 status in the gang. To make room for this emblem, Jacob burnt off his first homemade tattoo, a reference to his jail cell, “A1,” with a lighter, only to have it become infected. He’ll often say that he can’t explain why he says these things or that he does it to scare people off. But the real reason of course is related to his mental health. Jacob has been diagnosed with a long list of mental illnesses, including bipolar and borderline personality disorders. For most of his life, these illnesses have played havoc with his thoughts and emotions and have shredded any semblance of peace and stability in his life.
Jacob is one of the more than 6,000 North Carolinians suffering from mental illness who now live in long-term adult care homes. Adult care homes, commonly called rest homes, have long provided cheap boarding and basic assistance for the elderly. The state began licensing these homes in the 1940s; today, there are more 1,400 adult care homes in North Carolina. Unlike nursing homes, the staff at group homes like Parker’s are not authorized to provide medical assistance, only basic personal care services such as bathing, feeding and grooming. But in recent years, these privately-run group homes have become a major provider of housing to the mentally ill as a result of the state’s diminished role in long-term mental health care. Advocates for both the elderly and the mentally ill have protested the pairing of the two groups, and instances of violent crime and murder have snatched the headlines. Even in a good home, there is scant likelihood that the staff will be trained to supervise a person dealing with a serious mental illness such as schizophrenia or bipolar disorder.
At Threshold Clubhouse in Durham, N.C., a non-clinical service provider that offers a place for members to meet and work, most members live in family care homes. Threshold Employment Director Phil Wintermute says that most of the homes that they deal with are extremely well run and caring. However, financial motivations have lead to a very unstable housing situation for the mentally ill that, at its worst, can be “downright abusive,” he said. To maintain the bottom line, key home health aids are often paid meager wages and are the first to go in times of financial strain.
“The for-profit system for something like supported housing automatically sets up a situation where it’s open to people who think that they may be able to make money in an easy way,” Wintermute said. “There seems to be a perception among certain groups that operating a family care home is an easy quick way to make some money. Unfortunately, that leaves something to be desired when it comes to the care part of that.”
Moreover, Wintermute says that some family care homes tend to focus only on custodial care and reinforce the same institutionalized behaviors that have incited calls for reform since the beginning of the deinstitutionalization movement in the 1950s.
“I certainly don’t want to paint everyone with the same brush but it’s a huge problem,” Wintermute said. “If the expectation is uniformly low or not there, there isn’t a lot of support for progress. Sometimes we feel like we are working in opposite directions with some of the other folks in our member’s lives.”
At 18, Jacob is no longer a child. He’s big and can make a pretty domineering first impression. He stands around 6 feet 3 inches tall and he recently developed a bit of belly. But in so many ways he is still just a kid — a kid who is trying on this new body for the first time. His posture and gait are awkward and loose, which he says is a result of being born with clubfeet. He has kind but often sad eyes, which flash glances that sometimes seem at odds with his words. His clothes tell the story he wants people to know; that he’s tough, that he won’t back down from a fight. Nearly every day he wakes up and puts on the same baggy jeans and cutoff gray sleeveless shirt, which shows off his big, though soft, biceps. Only on occasions that would warrant it entirely inappropriate does he expose his hair, which is often cut by group home staff. He prefers to wear a black do-rag. As winter approaches, he has taken to wearing a threadbare flannel jacket over his sleeveless shirt. While the ensemble doesn’t provide nearly enough warmth, it’s simple and he says the cold doesn’t bother him too much.
Jacob’s room at the Parker’s Family Care is equally simple. It’s spare and drab. A lamp. An empty dresser. An old stereo. A small bookshelf with no books. An 8-by-10-inch print of a lighthouse, which seems out of scale on the barren wall. A folding chair is oriented to the centerpiece of the room: an 18-inch television, which is connected to an old Sony PlayStation that belongs to the group home. His closet is virtually empty. He has no personal photographs. He has little that places him anywhere other than right here in this moment. His only personal mementos are a middle-school science book and a catalog card from the Hillsborough library, which he has kept for nearly two years. It’s a reminder of a cute girl he spoke to briefly. To feel more at home, he has tacked a strand of colored Christmas lights to wall. Nothing is permanent about his living space. It’s as if he knows he won’t be staying long.
A System of Brokenness
North Carolina's mental health saga began with a 1999 Supreme Court ruling, which found that the unnecessary segregation of individuals with disabilities in institutions might constitute discrimination as described by the Americans with Disabilities Act. In 2001, the North Carolina General Assembly passed sweeping reforms to the state’s mental health care system. It was the first time since 1974 that the state had made major changes to the system. The goal was to move mental health services away from large state-run hospitals to smaller community-based providers. The initial plan called for the closing of one of the state’s four mental hospitals, and the creation of a statewide mental health trust fund. In addition, legislators intended to make local mental health agencies accountable to county governments and to split care management from care provision. Simply put: North Carolina counties are no longer in the business of providing mental health care.
North Carolina's switch to community-based care is not necessarily a tectonic shift in thinking. The deinstitutionalization movement, which began in the 1950s, has spurred a gradual clearance of U.S. mental hospitals. Between 1955 and 2000, the number of patients living in long-term state mental hospitals nationwide declined from 559,000 to 54,000. Mental health advocates have successfully argued that community-based care promotes hope and recovery by offering patients increased freedom in an environment more closely integrated with their family and community networks. However, North Carolina's ambitious plan proved difficult to implement. Complaints from families and mental health care providers came flooding in as a reduction in hospitalization services and the consolidation of mental health management entities threatened to make it more difficult to house and care for the mentally ill at the county level. Six years into the reform, complaints from mental health patients and advocates have not subsided. In 2006, the National Alliance on Mental Illness issued North Carolina a D+ for its mental health infrastructure, information access, services and recovery support, a grade that was slightly higher than the national score. During that year, North Carolina ranked 43rd among U.S. states in per capita spending on mental health, at slightly more than $50 per person.
As NAMI noted in their 2006 report, the problem with the reformed system is the state’s inability to meet the demand for long-term care of the mentally ill. Nearly 1.7 of North Carolina’s 9 million residents suffer from some form of mental illness. In the most severe cases of mental illness, patients require long-term, around-the-clock care. While the General Assembly’s ambitious reform plan called for reducing the role of state hospitals, their services continue to be in high demand and populations exceed the number of available beds in some wards. The problem of overcrowding has become so pronounced that the state has halted new admissions. However, as state hospitals cut inpatient services, community-based agencies are not able to meet the resulting need for adequate long-term care. As the availability of services dwindles, the system is at risk of becoming bottlenecked, causing long waitlists for services and the early discharging of patients from hospitals before their medicine has been given time to work.
A Bad Month
The judge said Parker’s Family Care Home would be his last chance to graduate from a group home; but after only one week young Jacob seems on the verge of burning through yet another safety net. He’s plodding down Wade’s Dead End Road, every movement from head to toe orchestrated to convey his resentment. His mind is racing. Moments earlier he had been throwing chunks of gravel at the owner’s 12-year-old daughter. When the daughter responded in kind, things quickly got out of hand. Miss Syreeta intervened. She explained to him, “You’re 18 now, you should know better.” But Jacob wanted nothing of it. Instead, he fired off a string of profanities and stormed off down the quiet country road.
It’s not a new scenario for Jacob. He’s been through plenty of group homes, and he’s burned dozens of bridges along the way.
A few weeks before he came to Parker’s, Jacob made his monthly appearance in Community Resource Court, a court that works with mental health providers to keep eligible offenders out of jail through proper medical treatment. Every month, offenders go before the judge to discuss how the following weeks have gone. At the end of the discussion the judge calls upon the fellow offenders to give a round of encouraging applause, especially when the individual has had a good month. Jacob is the last to appear before the judge on this day. He sits alone in the back of the cavernous courtroom, one hand in the other, slumped on one of the wooden benches. Rarely does he lift his head to look up at the proceedings. One by one, in reverse alphabetical order, more than a dozen grinning men, young and old, stroll past Jacob to the sound of hearty applause.
Jacob had not had a good month. He was living just up the road from Parker’s at a group home called Apogee. Rules at Apogee restricted him from traveling beyond the two white mailboxes that demarcated the home’s property lines. Time after time he continued to run away. Often he would sneak out of his window undetected and walk into the woods behind the house where he would sit for hours whittling a stick. Staff, not knowing where he was or how long he had been gone, would call on the police to come search for him.
As men walk down the aisle to applause for making good on promises to stay sober or holding down jobs, Jacob feels embarrassed for being perhaps the only person in the entire room who has had a decidedly bad month.
Jacob convenes with his public defender briefly before going before the judge. She explains what he already knows, that the judge won’t be pleased with this report. She escorts him to the front of the courtroom. Jacob listens intently to the judge, who reprimands him for continuing to ignore the rules of his probationary agreement. From behind bench, two paintings of stern-looking judges stare back at Jacob. He nervously rubs his hands, which are dirty and scratched like the hands of a mechanic, behind his back. Long gone is the image of Jacob the gangster. In accordance with courtroom policy, his striped rugby shirt is tucked into his jeans, billowing over slightly. He looks sheepish, nervous and just a little annoyed. He’s just another kid. A kid who thinks he might want to drive a Cobra someday when he has a license and a little money. A kid that blushes as he considers whether to slip his phone number to a cute girl at church.
In the end, the judge lets him off with only a strong warning. He encourages Jacob to take his medication according to his doctor’s orders, perhaps noting a discrepancy in the amount of lithium indicated in Jacob’s monthly blood test. Walking outside, Jacob bums a cigarette from a stranger and shares a laugh with one of the deputies. Extending his arms so that his forearms are turned up and his hands are touching, pinky to pinky, he jokingly prepares to be handcuffed. He seems relieved. But hours later, Jacob would take a razor blade to his forearm, creating two long, red grooves spanning from his wrist to his elbow. Frenzied and with fresh cuts, he would run into the street, hoping to be struck down by oncoming traffic. He woke up the next day at John Umstead Hospital in Butner, N.C.
After the incident, Jacob’s days at Apogee were numbered. The final straw came when Jacob broke down a door in order to reenter the home while the staff and group home members were on a shopping trip. Jacob says that when he declined to go to the store, they simply left him there, locked out of the house. After a week in jail, Jacob was sent to Parker’s Family Care with the understanding that if he fails here he’ll find himself right back in jail — this time for 3 months.
The Family Business
Kenneth and Syreeta Parker started Parker’s Family Care Home 20 years ago after they were both laid off from their textiles jobs in Burlington. After years of working for other people, Kenneth decided it was time for them to start working on their own. Wouldn’t it be nice to start a business just taking care of old folks, he said. It was a good fit. It provided the stability they wanted and the initial investment was extremely small, they already owned the property and only a few changes would necessary to bring the house up to standards.
Recently, Syreeta has been trying to get over the loss of her father, who passed away this August. He had contracted a staph infection following prostate surgery. Always a “daddy’s girl,” she had trouble coping with the frail figure he had become. He could no longer eat solid foods, and even swallowing liquids was a source great pain that often caused him to tear up, a sight Syreeta, who says she hates to see men cry, could hardly bear. By the end, he had lost so much weight that the contours of his skull were plainly visible. She has no regrets about not being there for the end, but finding closure has been difficult. She tried taking some time off work but it was short-lived. Soon she found herself back in the group home working the early morning shift, waking up around 5 a.m. in order to drop off her daughter and make it over to the house by six when she starts her daily regiment of cooking, cleaning and administering medications, as well as assisting some residents with bathing and using the restroom.
“There’s just always something to do here. It never lets up.”
This Thanksgiving, Syreeta invited her family to the group home for a festive dinner. While some residents of the group home celebrated with their families, just as many had nowhere to go. Jacob was one them. He says Thanksgiving has always been an unlucky and unhappy holiday for him, for as long as he can remember.
Family have been big help to Syreeta in the months following her father’s death and she was excited about the dinner. But before dinner could be served Jacob says he began feeling lightheaded, and soon he fell to the ground. It was a seizure. By the time an ambulance arrived, the seizure was over. So was Thanksgiving. Several of Syreeta’s relatives left shortly after the episode. Jacob felt responsible for the incident and was embarrassed about it later.
“I could tell it was a big deal for her, I felt bad,” he says.
Last Exit
The last thing Jacob says he remembers about the incident that forced him out of Parker’s was slamming the door and jumping into his bed underneath the Christmas lights. And though it may be hazy for him, there is no doubt that shortly after Syreeta asked him to finish a phone call, he flew into a vicious rage — breaking the phone and throwing a remote control in her direction. Finally, after pronouncing that he wanted to “kill all niggers,” he stormed out of the house. It would be his last night at Parker’s. When the police brought him back to the house, Jacob says his few belongings had been packed and left for him on the front porch.
Syreeta said it was the worst experience she has had in her 20 years as an adult caregiver. “I don’t need anybody threatening me in my own home, threatening my daughter.” Parker’s wasn’t right for Jacob, she says. He needs one-on-one supervision. Locked doors. He needs to be with people like himself.
Meanwhile, Jacob is running out of places to go. After getting kicked out of Parker’s, two group homes, one in Chapel Hill and another in Durham, refused to admit him. Surprisingly, he was able to find a bed in a group home called D & H near the Virginia state line, an hour and a half from his parent’s home in Chapel Hill. While it’s a temporary home until he can find a facility closer to his parents, it’s a good fit for Jacob. D & H owner Gladys Poteat says she’s dealt with residents suffering from mental illness for 26 years. She says that she normally examines residents’ records before admitting them and that it’s not out of the ordinary for her to decline someone who she knows will be a bad fit for her group home. Poteat never received a copy of Jacob’s record, but she accepted him, anyhow.
“We get a lot of people coming in with behavioral issues; we just hope that we can keep them here for a while,” she says.
Home for Christmas
Now in his third group home in as many months, Jacob says he is not even sure what it would mean or what it would take to “graduate” — he’s never lasted long enough to find out. Jacob is 18 years old. It’s should be an exciting milestone, when life seems to offer endless possibilities. For Jacob, the future is impossibly foggy and difficult to forecast. Recently a social worker came to D & H to talk to him about some programs that would help Jacob develop job skills. Jacob said it was a good meeting, but he is still unsure. He says that if he could live on his own, the first thing he would do would be to buy a security system.
“Wherever I live I need to feel safe, right now I feel safe in group homes,” he says.
But he knows that getting out on his own won’t be easy. In fact, he has a hard time imagining living without a group home support system. For now he is setting his sights small: spending Christmas with his parents.
In Jacob’s new room, the sound of Elvis’ “Blue Christmas” competes with a clamoring radio evangelist. His 86-year-old roommate has gone to sleep with the radio on, so Jacob has turned up his own stereo, creating a jarring cacophony to which he seems utterly oblivious. Even at this volume, he says the Christmas carols help him relax. He’ll leave them on until the morning just in case he wakes up in the middle of the night. In a few weeks, when he stands for his monthly court date, there’s a very real chance that he’ll be sent back to jail for the things he said to Syreeta. But for Jacob, Christmas seems to possess a sort of magic alchemy —like the dismal pond on Wade’s Dead End did — that seems to suggest that maybe anything is possible this time of year, even going back home.