Home Is Where the Hurt Is

Imagine being 80 years old, frail, in need of almost daily care. Imagine you have little money and no family willing to take you in. Chances are you would either end up in one of Miami-Dade County's 600 licensed assisted-living facilities, or in one of countless illegal homes. The sheets on your bed haven't been changed in weeks. There are feces under your fingernails because no one has helped you bathe in days. You feel the pain of inch-deep bedsores that refuse to heal. Out in the hallway, two mentally disturbed residents who also live in your home scream profanities at each other.

Now put yourself in the shoes of a 40-year-old diagnosed as schizophrenic, living in this same facility, dependent on a health care system you can't even fully understand. Your burnt-out relatives rarely visit you, your gray-haired neighbors across the hallway hardly leave their room, and your depressed, mentally ill roommate gave up on life by jumping from a balcony. Sometimes the wrong drugs are given to the wrong people, and sometimes, with chronic understaffing, medications aren't given out at all.

A nightmare indeed, but far from an exaggeration. Such conditions are a reality for many people stuck in some of Miami-Dade's woefully neglected, sometimes unlicensed assisted-living facilities (or ALFs). Although the elderly and the mentally ill have very different needs in terms of care, if they are poor, there's a good chance they'll be thrown together in one of about 160 places that are licensed to house such a diverse population. Even high-end assisted-living facilities that admit only seniors may not always provide the best of care. In this county there is a grand total of one person responsible for training all the administrators who run assisted-living facilities; only three inspectors assigned by the Agency for Health Care Administration (AHCA) make sure codes are enforced and the people in the approximately 9400 licensed beds in the county's ALFs are treated properly. According to Bruce Middlebrooks, who works for AHCA media relations, ALFs are not “required” by law to report how many people are living in each home at any given time. (Compared with other counties in Florida, Miami-Dade has the fewest number of inspectors assigned to assisted-living facilities.)

And these are just the licensed homes.

Unlicensed ALFs, experts and law enforcement say, have proliferated because of the shortage of affordable beds in licensed facilities. The underground network of ALFs is as vast as the number of legitimate homes for seniors and the mentally ill. “There are just as many unlicensed homes as there are licensed ALFs in this county, if not more,” says Det. Mary Walters from the Miami-Dade Police Department's elderly-exploitation unit. Douglas Adkins, chairman of the Florida Center for Assisted Living, a lobbying group that represents assisted-living facilities throughout the state, says dollar signs are driving the rise of unlicensed facilities. “It's more profitable to operate an unlicensed facility than it is to play by the rules,” says Adkins, who also owns an assisted-care home in Hilliard County that houses only mentally ill residents.

Since no agency monitors unlicensed facilities, neglect, abuse, and fraud are commonplace. In September City of Miami police officers charged 73-year-old Eva Avila with running an unlicensed home on SW 23rd Street. While conducting a surprise sweep of Golden House, police discovered eighteen elderly women living in bedrooms the size of walk-in closets. There was no air conditioning, and some rooms had no windows. The house was protected by burglar bars but lacked a fire escape; there were no licensed staff members on the premises. Avila told police she was just an old woman taking care of the people living in her home.

Only when a crisis erupts do residents complain to authorities, or anonymous tipsters report a case to an abuse hotline and make such places fall under authorities' radars.

A closer look at both the licensed and unlicensed ALFs and at AHCA investigations over the past three years reveals the deplorable state of many of those institutions set up to care for those who most need it.

The Pioneer Adult Residential Facility at 2166 SW Fourteenth Terr. is a legally run assisted-care home. It's licensed by AHCA and monitored by other public agencies and volunteer groups such as the Department of Children and Families (DCF) and the Long-Term Care Ombudsman program. Yet records kept by AHCA from as recently as this year show that the Pioneer is plagued with problems.

In December 1999 AHCA inspectors discovered that medicines were kept unlocked in a cardboard box, medical charts were incomplete, and some residents were either taking medicines without prescriptions or not taking medicines they were supposed to. One resident was taking Glipizide to treat diabetes, even though doctors had stopped prescribing it. The same resident was receiving another drug called Zestril every day without a physician's order. There also was no address or telephone number for the resident's health care provider on file at the Pioneer. When AHCA inspectors interviewed the Pioneer's assistant manager, Aida Leyva, she admitted not knowing who the resident's primary physician was. Another resident was prescribed insulin shots, but there was no record of the resident receiving them.

During a 1998 visit, inspectors discovered that nurses had not been regularly administering drugs such as Zoloft to mental-health patients. While part of an ALF's function is to help patients properly take their medications, at the Pioneer an announcement is simply made that drugs will be dispensed from an office. Those who are lucid or mobile enough to show up get them; those who are not often don't.

In October 1999 inspectors from AHCA flipped over a resident's mattress, and urine dripped from it. As they examined other beds in the facility, the inspectors realized that most mattresses were stained and had holes in them. In March 1998 AHCA cited the Pioneer for health violations when inspectors discovered the air-conditioning vents in the kitchen were filthy. Around the same time, the state agency received complaints that elderly residents had been raped at the facility; AHCA referred the allegations to DCF's abuse hotline. (DCF says the allegations were not substantiated.)

This past May inspectors from the Long-Term Care Ombudsman program observed that toilets needed cleaning, residents did not have access to private places to make, for instance, phone calls, and that there were no planned activities for residents as required by state law. (Florida mandates that residents at ALFs be engaged in appropriate activities for at least two hours per day or a minimum of ten hours per week.)

On a hot afternoon in September, mentally ill residents sat and smoked on the steps leading to the entrances of the Pioneer's two buildings in Little Havana. An elflike senior with blue eyes, pointy ears, a flamingo-pink button-down shirt, and a wisp of hair on his head greeted a New Times reporter at the gate. As he rubbed his skinny hands together, his long fingernails, which clearly had not been trimmed in a while, pointed to the cloudless sky. He walked about with spry steps. “I don't know how long I've been here,” he said in a high-pitched voice. Once inside the building he added, “But I really like it here,” while swaying back and forth like a child.

Residents hovered near the main office. Some begged for their mail while others inquired about their government checks. Others filled the stairs leading to the second floor. A female resident who looked to be in her forties stood on a step with a blank stare. Her face was so caked in layers of makeup, it appeared as though she were wearing a white mask. Two other mentally ill men argued. A tall, lean black man barged into the room of a white, shirtless resident and began repeatedly screaming, “I'm gonna break your motherfuckin' neck.” Each time the other man responded, “Your mother!” A few seniors were milling around the hallway as the shouting match ensued.

The Pioneer's walls are bare, the mattresses inside the rooms are thin and worn out, there is little furniture, and the tables and chairs in the dining area are small and flimsy. Next to the white plastic lawn chairs chained together in the television room is a brown broken-down piano, which no one plays. The only thing heard up and down the hallways on this day were the rants and raves of dysfunctional people. Seniors who wet their beds are grouped together and are called meones by staff, a derogatory Spanish term used to describe people who urinate often. Those who don't have the energy or will to get out of bed are just left there.

“The floors are collapsing, the tubs are slanted, and all the young mentals smoke in their rooms,” Detective Walters says, referring to a recent visit to the Pioneer. “The place is a real dump.”

While the Pioneer rightfully has earned a bad rep, even many of the more respectable homes would be grim places to spend your long days. The Carlyle on the Bay, at 1900 N. Bayshore Dr., is a legitimate home that also mixes psychiatric patients with seniors. In July 1999 AHCA cited it for not having enough staff to “ensure proper supervision of the residents and for not providing a safe environment.” In 1998 inspectors cited the Carlyle for not keeping accurate up-to-date medication administration records on residents. One resident was receiving Ativan, an anti-anxiety drug, without a physician's order. That year AHCA inspectors found that a door leading to the building's roof did not lock, after residents had reported seeing a man diagnosed with acute psychosis leaning over the roof of the building.

“We're currently deficiency-clear,” says Rose Wilson, administrator of the Carlyle on the Bay, in rather convoluted bureaucratese. But Carlos, a former Carlyle employee (he was working there when he spoke with New Times) who uses a false name because he wants to continue to work at ALFs, doesn't think the Carlyle has a clean record. “Everything is covered up,” he asserts. “Nobody wants to make any waves.” On a Sunday in September, while he was still employed at the bayside facility, Carlos stood at the entrance to the activities room where a few seniors, almost devoid of all facial expressions, sat in front of a blaring television set. Nearby on a hallway wall, a list of planned diversions for residents was posted. Biweekly Bible studies as well as weekly outings to Publix and Walgreens were offered. Other options included playing bingo and watching television.

Carlos says most people living at the Carlyle have no other choice. “An assisted-living facility is supposed to be a happy place,” he observes. “It's supposed to be a social facility. But here nobody really cares about these people.”

Between 1985 and 1999, seven residents killed themselves at Carlyle on the Bay, according to AHCA records. Five people jumped from the windows, balconies, or fire escapes of the condo-style building; the victims included a woman diagnosed with depression who jumped from her window in 1997, and a man diagnosed with chronic paranoid schizophrenia who jumped from the seventh floor of the building in the summer of 1999. Two others hanged themselves.

Carlos says the suicides are a result of carelessness. Indeed, as noted in AHCA records on the Carlyle from 1999, “preventative measures were not initiated in the facility to prevent further jumping from high altitudes.” Finally, in response to the 1999 suicide, AHCA required that wooden blocks be added to each window frame in the facility so the windows wouldn't open more than four inches, and that all fire-escape landings be completely enclosed in wire mesh.

Carlos criticizes the Carlyle for other reasons, too. He condemns the unpleasant aesthetics of the place, from the old faded furniture to the shag carpets he says should have been ripped out and replaced long ago. Water from a sprinkler recently seeped through cracks in the walls, flooding four floors of the building. He also challenges the way the Carlyle's administrator, Rose Wilson, runs the facility. He accuses her of not knowing how to “handle” mentally ill residents and claims she is careless about drug supervision.

AHCA reports from August 1998 and witnesses of a more recent incident that occurred at the Carlyle substantiate Carlos's claims. That summer a new resident revealed to AHCA investigators that she had not been taking her medicines since being admitted to the facility. The Carlyle chart AHCA investigators reviewed also stated that when the resident had asked for her medications, the nurse responded that she had run out of drugs, and therefore the resident would have to wait 30 days until her health care provider was in place.

This past July a 41-year-old mental-health patient was admitted to the Carlyle from the psychiatric ward of Jackson Memorial Hospital. (Mental-health patients who are on Medicaid and can't care for themselves are transferred to assisted-living facilities. Medicaid pays the bill for medicines prescribed by psychiatrists to mental-health patients living in ALFs; assisted-care facilities also receive government money for the care of each mentally disabled person living there.) The resident asked for her medicine on a Friday afternoon, says another Carlyle employee who asked not to be identified. “When no one responded, she asked me for help,” the Carlyle worker says. “I called a nurse, and the nurse said she didn't have any medication for the resident. The nurse took the woman to Rose. [At this point, say other witnesses, the woman began screaming for her medicine.] Rose just said, “Don't pay her any attention; that's what I do.'”

“Next thing you know, she walked outside and set her blouse on fire with a lighter,” says a 65-year-old wheelchair-bound resident who witnessed the incident. “A lot of crazy things have happened here,” he adds.

The resident suffered first-degree burns and remained in Jackson's intensive care unit for about a month. From there she was transferred back to the hospital's psychiatric ward, where she had initially come from. “I don't know how it happened,” she said in a phone interview. “I feel a lot of discomfort from the burns.” The resident's father would not comment further, though he believes there was no neglect on the part of Carlyle staff members. Former Carlyle employee Carlos, however, insists she had not been receiving medication for at least three days and had reached a state of desperation when she set herself ablaze. Administrator Rose Wilson would not comment.

In December 1999, according to City of Miami police reports, Adolf Parker, a Carlyle resident, set fire to his mattress. Upon returning to the Carlyle from a night of drinking and before entering his room, he argued with Wilson, Carlos says. “She gave him a 30-day notice to get out.” On the following morning, the sprinkler system in Parker's room started spraying water as flames and smoke filled his tiny living quarters. No one was hurt but the water from the sprinkler flooded four floors. Carlos says that although Carlyle owners received insurance money for new carpeting, the old, mildewed rugs remain to this day. Again Wilson declined comment.

Assisted-living facilities provide housing, meals, and support services. Staff members help residents bathe and dress and remind them to take their medications. ALFs are alternatives for people who don't need 24-hour nursing supervision but do require basic assistance in caring for themselves. ALFs intending to house both seniors and people with psychiatric disorders who receive a state supplement must obtain a limited mental-health license.

In Florida many assisted-living facilities started out in the 1960s as boarding homes for senior retirees. Back then they were known as adult congregate-living facilities and were not regulated until 1975. The admission of mentally ill people into assisted-living facilities dates back to the deinstitutionalization movement of the 1970s, when many mental hospitals discharged patients and shut their doors. “It's not, for the most part, a threat to the residents,” says Larry Polivka, director of the Florida Policy Center on Aging at the University of South Florida, of the living arrangements. “Of course it only takes one episode for it to become a problem,” he adds wearily. The issue of mixed-living homes has been debated for years, but it has prompted little action. Very few residential programs cater exclusively to poor mentally ill patients.

Between social security and state subsidies such as the optional state supplement, federal and state governments can provide up to $740 per month for someone needing assisted-living care. Of that monthly stipend, $697 goes to the facility for the cost of care, and $43 goes to the resident for personal expenses. Beginning in January 2001, assisted-living facilities that care for low-income residents will receive $818 per month per resident, and certain residents in the low-income bracket also will see a monthly stipend increase to $54 per month. The rise, however, will come at a cost to some people. Under a provision of the new rules, the income eligibility for receiving the optional state supplement will decrease from $697 to $590 per month; as many as one-fifth of the current recipients of optional state supplements who live in ALFs will be squeezed out. That translates into several hundred indigent elderly and mentally disabled people who will be cut off. Statewide 11,782 Floridians receive the state funds; among them 3125 currently live in Miami-Dade County ALFs.

By law mental-health patients who receive government aid, who can't live on their own, and who have no family willing to care for them must be referred to assisted-living facilities after hospital visits. Hospital social workers, says Douglas Adkins, chairman of the Florida Center for Assisted Living, must then discharge patients quickly -- usually they have two days to find a place for them -- so that the hospital doesn't run up costs.

But sometimes efficiency comes at a price. Social workers may not always have the time to research just where the hospitals are referring patients, Adkins says, and mental-health patients often run the risk of being discharged to homeless shelters or unlicensed facilities. According to Polivka the problem is augmented by the fact that even legal homes catering to low-income people often turn away mentally ill persons because they have no space.

Hospitals and government agencies that send people to assisted-care homes are faced daily with the dilemma of where to place patients who no longer need medical attention but can't afford even the cheapest of legal ALFs. The ultimate problem, says Adkins and other industry experts, is that the state does not spend enough money to make sure that people who need adequate care get it at legitimate assisted-living housing. Taking up the slack are hundreds of underground homes, often found tucked away in suburban neighborhoods.

Sometimes it is family members who place their relatives in unregulated homes, many not knowing a license is needed to run such a place. And often in Miami-Dade it's Latin families, say law-enforcement detectives investigating the abuse and neglect of the elderly and disabled. The places come highly recommended “from a friend of a friend or an uncle's cousin's aunt who knew someone in Cuba who was some kind of medical something,” says Det. Mary Walters from the Miami-Dade Police Department's elderly- exploitation unit. But, “just because you're a good housekeeper doesn't mean you're trained to run such a place.” Mary Jo LaMont, Walters's partner, says they've investigated more unlicensed assisted-living facilities in Westchester, which has a large Cuban population, than any other place in unincorporated Miami-Dade. “For a while it seemed like we were always on José Canseco Boulevard.” LaMont says.

Detectives Walters and LaMont are the only two members who make up the police department's elderly-exploitation unit. Each city police department in the county has its own equivalent. The two Marys, as they are known in the field and in state monitoring agencies, investigate and bust unlicensed homes. Since 1997 they've made 38 arrests. The people who run these homes, they say, often are elderly themselves. Operating an unlicensed home is a third-degree felony punishable by up to five years in prison. But since most defendants are first-time offenders with no criminal histories, say the Marys, they are sent to diversion programs and usually get no prison time.

Last year, however, the state legislature passed a bill that in effect established local task forces in every county. The State Attorney's Office, the local Human Rights Advocacy Committee, local law enforcement, and other social agencies must identify, develop, and implement a plan to enforce current state law. The task force must report to Tallahassee twice a year. Now the SAO has no choice but to crack down on hard-core scammers, the ALF equivalent of slumlords who prey on the elderly for their government checks.

Most of the people arrested by the Marys are Hispanic women. Walters cites as an example the arrest of a 60-year old woman who was caring for about a dozen elderly people in Southwest Miami-Dade. “She had been trying to lift an 80-year-old resident and dropped her on the floor,” Walters recalls. “The resident broke her ankle and laid in bed for days.” When the Marys arrived on the scene after receiving an anonymous tip, they discovered the bed-bound woman had bruises on her right arm; her left leg was so contorted it wouldn't straighten out.

“The victim's son was outraged that we were pulling his mother from this woman's care,” recounts Walters. “He claimed his mother was receiving wonderful care and said that a friend from Hialeah would come in a pickup truck to transport his mother to his home. I told him: “Over my dead body.' We sent that poor woman to the hospital to get checked out. The woman running the place told us she could care for these people just fine because she was strong as a bull. Well, that wasn't the case.”

This past May the Marys busted a tiny operation run by another elderly woman who was caring for two men. “Our bad guys walk with canes,” Walters says half-joking. A 52-year-old man in a wheelchair called police to report he had been locked out of his home. When the Marys arrived on the scene, they discovered an 86-year-old man who suffered from Parkinson's disease locked inside a bedroom in the home and left unattended.

Carlos from the Carlyle believes the real villains are those who keep such a critical industry underfunded and understaffed. “About a year ago at the Carlyle, a 90-year-old man who was supposed to get his medicine at noon died at 11:00 a.m.,” Carlos relates. “Since nobody discovered his body till about 4:00 in the afternoon, it appears as though no one ever intended to give it to him.” In the end, Carlos observes, it's an uphill battle as ALFs serve a disadvantaged population. “It's old people; no one cares.”


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