Friday, March 22, 2019

Building New Lives

Building new lives A revolution in care How Rhode Island became a leader in moving mentally ill, retarded out of state hospitals and back into the real world
Publication date:  11/25/1984 Page:  A-01 Section:  NEWSEdition:  ALL

First in a series

Just now, Elaine Cunningham, 49, is on top of the world. Her smile is big, her eyes wide, her voice crackling. "This is it," she's saying. "My big day."

Indeed, it is. After 36 years at the Dr. Joseph H. Ladd Center, Rhode Island's only public institution for mentally retarded people - a place that, until quite recently, could charitably have been called a human warehouse - Cunningham is moving out.

Outside Kingstown Cottage, her dormitory, a van is waiting in the morning sun. Inside, the 25 other female residents are getting their days under way. One walks half-naked toward the door. Another is yelling. A third is trying to steal a blueberry muffin from somebody's breakfast plate. A fourth is squabbling with an attendant over her medicine.

Cunningham heads down the hall for a last look at her room, which she shares with her longtime friend, Mary Tavares.

It is a small, drab room with two steel beds, two night tables, two desks, a rocking chair and a plastic-web lawn chair. The outer wall, made of cinderblock, is painted green. Sprinkler pipes run through the ceiling. The floor is cold, gray tile. The windows open out, like those in office buildings.

Cunningham won't miss that room, she says. Neither will Tavares, who also is moving out today. Margaret D'Agostino, a third Ladd resident who's saying goodby this morning, too, says she feels the same way.

By tonight, the three women will be settled into their new home, a single-family ranch house located in a tree-lined, all-American neighborhood in Westerly. For weeks, as part of a process to smooth their transition into the community, they have been visiting the group home and meeting its 24-hour staff.

They like what they've seen: wooden furniture, carpeted floors, wallpapered walls, a fireplace, two bathrooms, a well-stocked kitchen with all the modern appliances, windows that open up, a big backyard, a well-trimmed front lawn, a porch with a gas grille and a chaise longue. All of this for them, and a fourth woman from Ladd who'll be moving in later.

"I'll miss you," Cunningham tells Melody Mattscheck, an attendant.

"I'll miss you, too," Mattscheck answers. "Come give me a hug."

"I'm gonna have my own washer," Tavares says excitedly.

"A nice spray thing, too," Cunningham explains. "And we have two faucets in the sink. Cupboards."

"You guys are going to have it made," Mattscheck says.

"It's about time we're moving," Cunningham says. "About time."

The van's driver waves. Time to go. The women embrace the attendants.

"We'll miss you," Mattscheck says, "but don't you come back, hear?"

OVER THE LAST two decades, there has been a revolution in how Rhode Island cares for its mentally disabled people - a revolution that goes by the cumbersome title of deinstitutionalizati¬on.

For Cunningham and D'Agostino and Tavares and hundreds like them, it has meant leaving institutions for new lives in the community - liveswhere they can find the self-worth, happiness and dignity that was lost to them behind brick walls and barred windows.

For hundreds of others - a new generation of disabled people - it has meant never having to enter institutions at all.

Rhode Island has two public institutions exclusively for the mentally disabled: Ladd, which specializes in the mentally retarded, many of whom also have physical handicaps, and the Institute of Mental Health, in Cranston, for the mentally ill - schizophrenics, psychotics, depressed people. A third institution, Zambarano Memorial Hospital in Burrillville, has a single ward for the retarded.

A revolution?

Since 1964, its peak year, the population of Ladd has dropped from 1,017 to 390. The IMH population, which peaked at 3,459 in 1954, now stands at about 360, the lowest census in 99 years. Zambarano's ward, which housed 102 retarded people (mostly infants and children) in 1961, now has 38.

Of course, not every one of those approximately 3,750 people went to group homes. Some died. Some drifted out of state. Some wound up in flophouses or on the streets. A handful landed in prison. Several hundred - primarily the aged - went to nursing homes, Zambarano, or the state-run General Hospital in Cranston.

BUT MOST, like Cunningham and D'Agostino and Tavares, have come back to the community to live in dignity. Hundreds were moved to group homes and group apartments. Some went back to their families. A few hundred spent time in supervised programs, then advanced to livescompletely on their own.

Almost all had spent years at the IMH, Ladd, or both. Many had been confined for decades on locked wards. Some had been beaten, shabbily clothed, poorly fed, taken advantage of in countless other ways. For the most part, they had been forgotten by their families, their friends, their legislators, abused and neglected by their caretakers.

Today, they are our neighbors. They live in ranch houses on shady suburban streets, in inner-city apartments, in working-class neighborhoods and moneyed districts, on main drags and out-of-the-way culs-de-sacs.

Some have jobs in the private sector. Others are employed at "sheltered" workshops or attend programs where social workers teach them such basic skills as how to brush their teeth, dress, cook, wash dishes and do laundry. Still others attend public schools.

You ride with them on the bus, see them at the library, the grocery store, McDonald's, in the park, at the malls, at PawSox games.

Some, you may not recognize. Others, you surely will. They may be muttering to themselves. Maybe they forgot to tie their shoes, or button or tuck in their shirts. Maybe they're deformed, or confined to wheelchairs.

The attendants used to hit us out there. They hit me on the face with a bottle of soda when I asked for it. They threw it in my face and got me all wet down the front of me. And she told me I couldn't have no more after. Just like a prison out there to me.

- Anna Russell, who spent 32 years at Ladd, and lives now in a subsidized apartment.

THE REVOLUTION has been national, as well.

With few exceptions, the 50 states have reduced the populations of their institutions. Some states did it without proper discharge planning and provision of community services, leaving thousands of mentally disabled people to fend for themselves in a complex, changing, confusing world.

Others, such as Rhode Island - which experts consider a national leader - spent millions of dollars and took several years to do the job well.

"Where a state has moved slowly and put community supports in place, deinstitutionalizati¬on has succeeded," says Dan Caley, public relations officer for the state Department of Mental Health, Retardation and Hospitals, the primary architect of Rhode Island's movement.

It happened for two reasons, financial and humanitarian: Ultimately, community services are cheaper than those provided in institutions, and the quality of life outside is immeasurably better than behind brick walls.

"The evidence is that community care is cost-effective and more therapeutic for the chronic patient," says former MHRH head Joseph J. Bevilacqua, now commissioner of Virginia's Department of Mental Health and Retardation.

It happened, too, because Rhode Islanders - despite frequent disagreements on where group homes should be located - have supported the movement by approving all 10 of the multimillion-dollar bond issues the state has requested to build community homes and devise programs over the past 17 years.

And it happened because the climate - a national climate of civil rights for others who were deprived, women and blacks among them - was right.

Says Robert L. Carl. Jr, head of MHRH's retardation division: "It's a measure of the values of this society. We value people. We value even significantly disabled people, to the extent that we will spend a lot of money to have them live and exercise as much humanity as they can."

The locked wards were terrible. They pushed me, threw me onto the mattress. Choked me. Didn't treat me right. I was afraid. Suppose I hit the floor? I just can't describe it. . . .

- P.G., 58, a schizophrenic, who was at the IMH a dozen times between 1960 and 1982, and now lives in public housing in East Providence.

FOR MANY REASONS, community care of mentally disabled people is cheaper in the long run than institutional care.

Because they are much smaller, community residences are able to meet fire-safety codes and regulations at significantly less cost than institutions. Salaries and benefits for workers at privately run homes also tend to be less than those for state employees, most of whom are unionized.

In addition, group homes have only a fraction of the overhead costs of large institutions - sewage treatment plants, miles of paved roads to repair and plow, acres of lawns to mow, massive heating and power plants.

MHRH cites these estimates for average daily costs for each patient: at Ladd, $167; for retarded people in community homes and programs, $60 to $150, depending on medical needs; at the IMH, $207; for mentally ill people in community homes and programs, $60.

Not surprisingly, as deinstitutionalizati¬on has proceeded, the costs of running the IMH and Ladd have begun to drop. Fiscal 1979 spending for the IMH was $24 million; this year's budget is $22 million. In 1981, $22.4 million was spent to run Ladd; this year's budget is $19 million.

I was petrified. I used to see things no one would believe. I don't even want to talk about it. I have the shivers going through me even now. . . .

- Dora, at the IMH from 1949 to 1979. She has her own apartment now in Central Falls.

HAD RHODE ISLAND not opened the doors, thousands of people would still live at Ladd and the IMH - and the populations today could well have been higher than ever, MHRH officials say.

In part, that's because medical advances since the 1960s have prolonged and improved life for birth-defective babies. In part, that's because the postwar baby boom has produced the largest generation of young chronically mentally ill people in U.S. history. Both groups are now served primarily in the community; two decades ago, they would have gone to Ladd or the IMH.

Because fire-safety regulations have become much stricter in the last two decades, most of the buildings at Ladd and the IMH would not have met the latest federal and state codes. MHRH would have been faced with a capital-improvement program that would have cost untold millions.

Some buildings could have been renovated. Others - those built in the late 19th or early 20th Centuries and now closed - have passed the point where renovation was feasible. New construction would have been necessary.

MHRH's Carl gives these cost estimates, which he describes as conservative: for renovation of buildings at the IMH and Ladd, $50,000 per bed; $100,000 per bed for new construction.

By contrast, MHRH estimates the maximum cost of buying a private house and converting it to a group home is $20,000 to $25,000 per bed. Carl estimates the cost of building new group homes at $30,000 to $40,000 per bed, at most.

The showers were all open stalls. They had no doors. Then there were the hopper rooms. Hoppers were Ladd slang for toilets. The toilets were five or six right in a row. The clients were hoppered after mealtimes. They would sit on the toilets and staff would watch. There were no toilet seats.

Janet Bullock, who worked at Ladd as an attendant in the 1960s and '70s, and who now works in a supervised apartment program in Providence.

TWENTY-FIVE years ago, community care of the mentally disabled was a concept that existed only in the minds of imaginative social reformers. True, some parents kept their disabled children at home, but they were on their own in caring for them.

Today, MHRH's community system serves more than 7,000 chronically mentally disabled people, employs nearly 2,500 professionals, and has programs and group residences in every corner of Rhode Island. Some are operated directly by the state. Most are privately run under contracts with MHRH, with the majority of their financing coming from the state and federal governments. (Other sources include local municipalities, private donations and fees, workshop profits, the United Way and other charitable agencies.)

Because disabled people have a variety of medical and mental health needs, the community system that has been developed in Rhode Island is a patchwork of services and living arrangements.

Some apartments and homes - those for profoundly retarded and physically handicapped people who have trouble moving independently - feature handrails, customized bathrooms, fireproof materials. Because of their special features, the state had to build most of these group homes.

Other homes, for the more capable, are no different than houses for normal people. In fact, most of them were once private residences which the state bought and renovated, at less cost than newconstruction.

Recreational, educational and work programs are similarly diverse. For the most disabled, learning to tie one's shoes may take days and require full-time assistance. Others may need help only in sophisticated skills - negotiating the public transit system, for instance, or keeping a checking account.

Very, very boring.

- Chris Craddy, 29, who spent almost 13 years at Ladd before moving into a group home.

LATE IN THE afternoon, after spending their regular day at a workshop for the retarded, the van carrying Cunningham, Tavares and D'Agostino pulls into the driveway of 6 Mockingbird Lane, Westerly.

A slight woman with black hair and a sharp jaw, Elaine Cunningham was born March 29, 1935, in Providence. The third of seven children, she didn't walk or talk until she was almost 6. She was a problem child, frequently breaking windows, yelling, unable to sit quietly for long.

She attended grammar school, but teachers weren't happy with her. When she was 12, they suggested she be sent to Ladd. Her family agreed. Because admission criteria in the 1940s were loosely defined - the word of a priest, minister, doctor or principal was enough for a lifelong commitment - she was accepted immediately.

"Committed on 2/26/48," her record states, "with the description of being slow in school, whispering and talking to herself continuously, being a behavior problem and unable to follow directions for any period of time."

Today, she is described as "moderately retarded," which puts her IQ in the 36-to-50 range. Like her housemates, her retardation is at least partly attributed to the anaesthetizing effects of her years at Ladd.

Mary Tavares, a dark, tall woman with curly hair, was born Jan. 22, 1944, in the State Infirmary in Howard (Cranston). Three months before her birth, her mother, a 13-year-old retarded woman from Providence, was committed to Ladd when she was found to be pregnant (she eventually left Ladd for a group home and now lives in a subsidized apartment). Tavares's father has never come forward.

In December, 1944, she was placed in a foster home. She was late in talking - though when she finally did, she spoke two languages, English and Portuguese, the native tongue of her foster family. As a toddler, she had temper tantrums - pulling her hair out, ripping off her clothes, screaming when she was angry.

When she was 4, a doctor examined her and wrote that "this examination . . . suggested that Mary might be mentally defective." As her foster parents aged, they became too frail to care for her. Not yet 18, she was admitted to Ladd on Jan. 10, 1962.

Today, she is considered severely retarded, and her IQ measures between 20 and 35. She is still, however, bilingual.

Margaret D'Agostino is the least retarded of the three. Her degree of retardation is described as "mild," giving her an IQ between 51 and 70. The people who know her suspect she wouldn't be retarded at all if she hadn't lost almost 18 years to Ladd.

D'Agostino, a short, heavy woman with a pretty smile, is articulate and opinionated. The third of seven children, she was born in Central Falls on Oct. 23, 1944. Records indicate that she was a normal, healthy child, with one exception - grand mal seizures that medication didn't control.

She spent several years in a parochial school, but her seizures interfered with her work and she failed several grades. On March 14, 1966, at the age of 21, she was admitted to the IMH for treatment. She never went home.

While at the IMH, a doctor wrote: "She has become a nuisance on the ward because of inactivity. She can be noisy and disturbing." The IMH staff suggested she would do better at Ladd, and on Dec. 13, 1966, she was transferred. Today, the right medication has been found to control her seizures.

I always ask people: "How many of you have ever lived in institutions?"

- Daniel McCarthy, director of community mental health services for MHRH.

"OH, ISN'T THIS nice," Cunningham says as she walks up the front steps of her new home. Tavares doesn't say anything, but she jumps up and down, frantically clapping her hands. D'Agostino grins.

"Glad to see you came," says Tori Hulsman, a group home worker.

Under a state contract, 6 Mockingbird Lane is run by Alternatives Inc., a nonprofit agency in Peace Dale, South Kingstown, which operates several other group homes in South County. Most of the eight people who will staff the home are on hand for the women's arrival.

Unpacking their belongings - clothes, stereos, toiletries, books, posters, stuffed animals - takes most of the afternoon.

Dinner that night is spaghetti and salad. The women help prepare it and set the table - only two of the household chores they will share.

"Ladd Center - I didn't like it there," Cunningham says. "You get biffed and banged around. I wanted to get out. I'm going to stay here."

About this series

In many states, programs to move people with mental health and retardation problems out of state hospitals have been a disgrace.

To find out how deinstitutionalizati¬on is working in Rhode Island, Journal-Bulletin reporter G. Wayne Miller spent nine months visiting more than 130 group homes and other programs - better than 90 percent of those in the state. He interviewed hundreds of social-service professionals, out-of-state experts, neighbors and mentally disabled people, and spent many days observing life at the Institute of Mental Health and the Dr. Joseph H. Ladd Center.

Miller reports on this revolution in a six-part series, beginning today and continuing this week in the Providence Journal and The Evening Bulletin.

Miller, 30, is a 1976 graduate of Harvard College. After nearly three years at the Cape Cod Times, he joined the staff of the Journal-Bulletin in October, 1981.

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