Friday, March 25, 2016

In Ladd's final days, some exemplary care

Many residents of the Ladd Center, Rhode Island's now-closed institution for the developmentally disabled, suffered cruelly through years of abuse and neglect. But toward the end, as the state moved aggressively to move everyone onto what was then, the 1990s, a model community system (and now is under intense scrutiny for alleged abuse and neglect), conditions had improved significantly. I witnessed this personally during the week 26 years ago that I was allowed to live on one of the last wards for a Providence Journal story.

Here is that story, the story of Lorraine Jean Bessette.

Lorraine's world As Ladd Center prepares to close, a new day dawns for the profoundly disabled
Publication Date: July 29, 1990  Page: A-01  Section: NEWS  Edition: ALL  

SHE WAS given ID No. 2774. She was labeled an "idiot," one step below "imbecile" on the mental scale. She had blue eyes, perfect features, beautiful hair and skin, curvature of the spine. She was 18 months old.

"The child is a great burden on the mother," read the paperwork. "There are four older children, the oldest of whom is only eight. Mother is expecting a sixth child in another month. The baby, Lorraine, is very heavy, is unresponsive and takes a great deal of mother's time. She is exhausted. Lorraine is also a feeding problem."

Four days after Christmas, 1948, Lorraine Jean Bessette, born with severe cerebral palsy, was committed to the Ladd Center.

She's still there.

But only for a little longer.

Lorraine's headed for a home in the community.

And Ladd is going out of business, probably next year. Closing Rhode Island's only institution for the retarded will bring down the curtain on an era whose first act was compassion, whose long-running second act was degradation and despair, and whose finale is resplendent with a chorus of new dignity for some of society's most vulnerable - and needy - people, people like Lorraine.

Lorraine's 43 now, all grown up.

She loves babies, hugs, thumbing through women's magazines. She hates vegetables, particularly squash. She favors pink fingernail polish, ribbons in her hair, dresses she orders herself from the Sears catalogue, coffee with cream and sugar, chocolate cake, barbecued chicken - provided it is ground to a consistency she can swallow. Her best friend is Diane, who spent years at Ladd and is in a group home now. Diane telephones about once a week. Her picture's on Lorraine's dresser. When she can, she has Lorraine over for dinner.

On this summer Sunday, Lorraine is in her wheelchair, custom-built at a cost of almost $4,000 to accommodate her 88-pound body, which is permanently twisted in ways unique to her. On her tray is one of her sign boards. Lorraine cannot utter a word, but she is a masterful - and, sometimes, sly - communicator. With no more than facial expressions and her signature giggle, Lorraine can tease, flirt, plead and display anger or disgust or great joy.

Her sign boards expand the possibilities. This one, the small everyday one, has pictures of her doll, her bed, a TV, a toilet, orange juice and a three-layer chocolate cake. All day, she's been pointing to the cake with her left hand, the only one with any use in it. A huge smile has been overspreading her face. Those big blue eyes have been twinkling.

"What've you been wanting?" says Linda Hussey, principal attendant on Lorraine's ward, Rehab 1. On her supper break, Linda slipped off grounds on a secret errand. Now she's back.

"Tell me. What've you been wanting?"

Lorraine points to her sign-board cake.

"Ta-da]" Linda places a hunk of fudge cake on Lorraine's tray.

"See it? Just like the picture."

Lorraine shakes her head, the very image of disappointment.

"What do you mean, no?"

Lorraine's face brightens.

She laughs.

Her head is going up and down now, yes] yes] yes]

"You're teasing again, woman," Linda says. "As much as you nagged me about that cake, you're going to eat it]"

Lorraine, never one to pass on a prank, is convulsed. When she's calmed down some, she struggles to get her fingers around the cake, but the slice is too big. Linda breaks it into bits.

"There," she says. "All bite-size pieces so you can pick it up. Looks like we're going to have to wash our hands after that. Goo city."

Later, Linda will muse. "I wonder sometimes what they dream. I wonder what they'd say if they woke up one morning and could talk."

Lorraine and me, 26 years ago.

Most born 'fragile'

Living with Lorraine are 26 men and women ranging in age from 23 to 68. All are profoundly retarded. All have some sort of physical disability. Most are what the physicians call medically fragile: prone to epileptic fits, digestive difficulties, heart problems, limb contractures, muscular atrophy.

Some can trace their disabilities to early-childhood accidents, but most came into the world with something wrong, a reminder of just how delicate human procreation is.

All but a handful have been at Ladd for years. Because of their multiple handicaps, which make placement in group homes more of a challenge than those less dependent, they are the last to go. They are the Final 200, members of a class that in Ladd's heyday, the mid-1960s, numbered more than 1,000.

Lorraine's world is a cinder block and brick building. It has three stories. Two have bedrooms, day rooms, bathrooms and dining areas. The basement has treatment centers for exercising and learning skills - putting pegs in boards, for example, or introducing new symbols onto Lorraine's most sophisticated board, which is up to 48 pictures now. On steamy summer days, there are enough air conditioners and fans on Rehab 1 to make things tolerable.

Aesthetics, a concept once alien to institutions, count.

Walls are painted pleasant shades of green and blue. Curtains and prints have been hung, fake potted plants put about, color TVs and VCRs and tape decks brought in. Every resident has a chest of drawers, a closet, his own shampoo, deodorant and soap. Beds have pillows and spreads and are made every morning.

It's a far cry from the days of Ladd's infamous back wards - days, not much more than a decade ago, when Lorraine slept in a crib, always wore a hospital johnny and spent her waking hours alone in a "vegetable cart," a wheelbarrowlike contraption inspired by what old-time peanut vendors pushed around. These were the days of isolation chambers and personal hygiene that consisted of herding excrement-covered people into cavernous tiled rooms and hosing them down.

Today, everyone has his or her own wardrobe, purchased with Social Security money. One man sports a Playboy T-shirt. Another wears one that proclaims: Professional Beach Bum. Red Sox, Patriots and Special Olympics motifs are standard. Lorraine likes dresses and skirts, typically in bright colors. But her most beloved dress is checkered gray.

"Her preppie look," Linda says.

The care-givers

As conditions at Ladd have slowly improved, the work load inevitably has increased.

From 7 a.m. until the day's over, frequently at 10 p.m. or later, the attendants - who often must work shorthanded - barely have time for the cigarettes most of them seem to smoke. They spoon-feed those residents, a majority, who cannot lift a fork. They change diapers. They do the laundry. They groom, shave, dish out ice cream treats, comfort, amuse, brush teeth, hold hands, dress, undress, tuck into bed. They keep incessant records: positioning charts, defecation charts, med and hygiene charts.

"All my life, I've found someone to take care of," says Chris Eidam, another attendant on Rehab 1. If Lorraine could speak, Chris believes, "she'd probably say, 'Thank you.' She's such a grateful person."

Today, Chris has dinner duty in one of Rehab 1's small dining rooms. Four residents are here. Only Lorraine can feed herself. Chris dishes her dinner - ground steak, mashed potatoes, pureed butternut squash - onto her plate. Lorraine starts to eat with a Teflon-coated spoon, which is easy on the teeth. Lorraine has a special handle and cup for drinking, but she doesn't like them. She prefers sandwiching a regular cup between lips and the back of her hand, even if the spill rate is significantly higher.

Chris's little sister was 4 when she collapsed, the victim of a rare blood disease. "I remember holding her in my lap, my mother trying to call an ambulance," Chris says. "She kept saying, 'My head] My head]' They tried surgery. She didn't make it. She was buried on my 13th birthday.

"Had she made it, she probably would have been here."

Lorraine is crying. She's gotten a taste of squash.

"Squash isn't anything to cry about," Chris says, but her reasoning doesn't impress Lorraine.

"What about those roses in your cheeks?" That's Chris's little ploy, telling Lorraine vegetables bring out good color.

Lorraine won't be persuaded.

"Okay." Chris scrapes the squash away.

"There. Now there isn't any."

Lorraine grins and gets back to work - more quickly, now that dessert, some sort of pudding, is that much nearer.

"She likes to read beauty magazines," Chris says. "I tell her those girls are so pretty because they eat their vegetables. She laughs. But only sometimes does it work."

Opened in 1908

The Exeter School for the Feeble-Minded opened in January 1908, when Dr. Joseph H. Ladd (for whom the institution would later be renamed) and eight "boys" moved into an old farmhouse on property that was about as far away from it all as one could get in turn-of-the-century Rhode Island.

The motivation was compassion - and, purportedly, protection. Exeter gave all its residents asylum and, for the "high grades," employment on a farm. The School for the Feeble-Minded gave greater Rhode Island a dumping ground.

Within 20 years, 430 people were "enrolled." Many were retarded. Many were not. Prostitutes, paupers, immigrants, thieves, "undesirables" of all stripes wound up in Exeter. Typically, their ticket was a form requiring only the signature of two doctors. More often than not, the ticket was one-way.

As early as the 1920s, accounts of abuse began circulating about Exeter, which the automobile was bringing closer to populated Rhode Island. Buildings were fire hazards. Wards were overcrowded. Health care was primitive. Sanitation was lacking. Residents were being beaten, some to death. Decades passed. The stories, many verified in Journal-Bulletin investigations, only got worse.

"You'd see people in feces and urine, lying in it," says Ed Brown, who began work at Ladd in 1962 and is still there, on Lorraine's ward.

"I remember a client who would bite. He was in a detention room 365 days a year, 24 hours a day. He'd been there for years. He had no wearing apparel, only a mattress and two sheets. One day, they let him out. They had a rope around his waist. He was out maybe half an hour and they brought him back."

Says Walter Kirk, 77, who was shipped off to Ladd in 1925 and is still there: "Danforth beat me with a rubber hose. I don't know why, myself. He was the boss. He's dead now."

The only option

In 1948, there was no help for a family such as the Bessettes. If a family couldn't make a go of it with their disabled newborn, Exeter was the only option.

"Due to present high cost of living, family having a difficult time to get along, although the father is employed steadily," one of Lorraine's pre-admission records states. "They are attached to the child but realize that it is for the best to have her institutionalized."

On Dec. 29, 1948, she was.

Lorraine's siblings, who lived in northern Rhode Island, were told by their father that their baby sister had died, according to Ladd officials. Lacking anyone to pay any attention to her, Lorraine would pass the next four decades in her crib and vegetable cart, with little but the walls to amuse her.

There is no test to tell how much of Lorraine's situation results from birth defects, how much is the inevitable product of so much numbness. One can only speculate where she might be if, like today's handicapped babies, she'd had intensive help - and been able to stay home.

"If she'd been given the benefit of early intervention," says Chris Eidam, "she would have gone so far. How far? I don't doubt that she could read."

(Two years ago, Lorraine's social worker managed to track down a sister, who was stunned to learn Lorraine was alive. There has been limited contact since, despite several overtures from Ladd.)

The larger picture

While Lorraine and hundreds like her were almost literally rotting, someone was beginning to pay attention, at least to the larger picture.

By the 1970s, newspapers were turning up the heat on Ladd. A federal lawsuit was filed by an advocacy group, the Rhode Island Association for Retarded Citizens. Aggressive young bureaucrats took over at the Department of Mental Health, Retardation and Hospitals, which runs Ladd. Governors and the General Assembly agreed on a new mission. So did voters, who supported development of a community system by approving tens of millions in bonds.

As group homes sprouted all over Rhode Island, the population of Ladd slowly shrank from its mid-1960s peak of more than 1,000. By 1986, fewer than 300 were left.

The monster was dying. And Rhode Island, which had risen from a vegetable-cart mentality to become a national leader in the dignified treatment of the disabled, was on its way to becoming the first state not to have an institution for the retarded.

Four years ago, Governor DiPrete made it official. DiPrete, whose commitment to handicapped people has been unwavering despite his political ups and downs, announced that Ladd would close in 1991 - a target date that remains feasible, although it could be into 1992 before the last light goes off forever. Closing Ladd, DiPrete said, would be accomplished by accelerating the development of group homes, including specialized facilities for people with multiple physical, medical and mental handicaps.

"What have we learned?" says James V. Healey, head of the Rhode Island Association for Retarded Citizens. "We've learned we can't segregate ever again."

A better place

Tuesday evening.

The phone on Rehab 1 rings. Debbie Sheldon, an attendant, answers. It's Diane. She's calling from her group home, in Johnston.

Lorraine has visited Diane enough to know that's just the kind of place she wants to live in. For one thing, with a lower resident-to-staff ratio than Ladd and better transportation possibilities, the home's five residents get out a lot. They go shopping, to the movies, to Rocky Point Park, to the beach, to restaurants, to sheltered workshops and jobs.

For another thing, there's chocolate cake and barbecued chicken and a whole bunch of good stuff like that. At the group home, residents help prepare their meals. They have a say in the menu. They can smell dinner in the oven. Except for swallowing, residents of Ladd hardly ever get involved in these most basic - and delightful - of human pursuits.

"The homes are beautiful," says Linda Hussey, the attendant. "No matter how many pictures you hang on a wall or how many plants, it will always look like an institution at Ladd."

Goodbye Ladd: Lorraine's new home.

Lorraine's wildest dream is to live with Diane. What she doesn't know yet is that, within a few days, arrangements will be completed to make her dream come true.

Debbie Sheldon wheels Lorraine to the phone.

"It's for you," she says.

Lorraine lights up. Debbie holds the phone to her ear. Lorraine giggles. On the other end, Diane is saying hello.

"Ask when she's coming to a cookout," Debbie says, loud enough so that her voice carries over the line.

Lorraine giggles.

On the other end, Diane can be heard.

"I think she's saying, 'I love you,' " Debbie says. "Ask her when she's coming over. For a cookout and a sleepover."


"Is she telling you a dirty joke?"


"Tell her you love her."

More giggles.

On the other end, a group home worker's voice is heard. "Lorraine, do you want to come over and see Diane? Would you like to come for dinner?"

Lorraine's head is going up and down, yes] yes] yes]

"Yeah? You might be interested? How about Sunday?"

Lorraine is laughing so hard she's crying.

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