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.

Monday, March 21, 2016

'The beast is dead.' Or so we thought, 22 years ago...

The state of Rhode Island 22 years ago this March closed the human warehouse known as the Ladd Center, an institution in Exeter, R.I., for people then labeled "retarded" -- people we today know as developmentally or intellectually disabled. Vulnerable people frequently without voice who, with some exceptions, particularly toward the end, were brutally mistreated for decades at Ladd.

The story below is the one I wrote on that triumphal day.

As you will read, after decades of abuse and neglect -- and following Providence Journal exposes, a federal lawsuit, and tireless advocacy -- one of the leaders of the movement could declare: "The beast is dead... Nobody will ever be able to throw away a human being again."

An enlightened state legislature with the determination of compassionate departmental leaders and taxpayers who supported millions of dollars in bonds to build a model system of community group homes and programs had prevailed. The powerless had found power; the voiceless, a voice. And we were all the better for it.

And now, in March 2016, comes word of Barbara A. Annis, a 70-year-old developmentally disabled woman in a state-run group home who died after a broken leg became infected and staff did not get her to a hospital until days later, when it was too late; when surely she had suffered as the infection that killed her intensified. A cruel history, tragically repeated; a system that has been allowed to fragment and decay. How wrong. Did we learn nothing? Do we now, again, believe some lives matter more than others? Read about the woman's death in the story I wrote. Read further developments, and of another investigation of alleged patient abuse at the state-run Zambarano Hospital.

So read, below, the story I wrote on the very final day of Ladd, 22 years ago this early spring, when triumph prevailed and the hope was that no person would ever again have to suffer the indignities of a heartless system... or die because of its neglect and abuse.

The Ladd Center in the 1970s. Residents spent hours like this, warehoused. What the camera didn't capture was worse.

The Ladd Center in the 1950s, when first Journal expose was published. You are welcome to compare to 1930s Germany.

FINAL DAY Ladd Center shuts down quietly
Publication Date: March 26, 1994  Page: A-01  Section: NEWS  Edition: ALL

At 12:35 p.m. yesterday, the last of five men was helped into a van outside a building at the Ladd Center, Rhode Island's institution for the retarded. It drove off, its passengers never to make Ladd home again.

After 86 years, Ladd was closed.

"The beast is dead," said Robert L. Carl Jr., the state official responsible as much as anyone for slaying it.

It was the end of an era that began in 1908 with hope for society's most vulnerable people - hope that had given way, by the 1960s and '70s, to scandal and shame. More than 4,500 people lived at Ladd over the course of its existence. No one will ever know how many suffered.

There was no ceremony for Ladd's last hours - no speeches, no champagne, only a quiet, emotional gathering of some two dozen people who battled for decades to build a better life for those who could not do it themselves.

Together, Ladd's final five residents spent 206 years in the institution. Now, like hundreds who left before them, they will shop on Saturdays, not lie naked in their own feces, as many did during the years of worst abuse. They will have their own rooms in their own homes, not be packed 50 to a back ward. They will bathe, not be hosed down.

"Nazi Germany killed these people," said Carl, who heads the Division of Developmental Disabilities, a branch of the state Department of Mental Health, Retardation and Hospitals, which ran Ladd. "Rhode Island made a commitment to treat them with dignity and respect."

"How do you find a word for this?" said James V. Healey, executive director of the Rhode Island Arc, which four decades ago began the battle to find alternatives to Ladd. Like Carl, Healey had tears in his eyes at 12:35 p.m. yesterday.

"I never lost faith," said Ladd's superintendent, George W. Gunther Jr., who left a lucrative career as an insurance executive 24 years ago to work for change from within, and who had vowed, on his promotion to the top job, to one day close the place. Gunther's daughter, Nancy, was at Ladd for many years.

Rhode Island joins New Hampshire and Vermont, which recently shut institutions, as the only states to serve people with developmental disabilities entirely in the community.

But Rhode Island declared its intention first: In July 1986, when former Gov. Edward D. DiPrete announced Ladd would be out of business within five years. Construction of group homes and centers for Ladd's remaining residents, more disabled than those who'd already left, took longer than expected.

Promises not kept

In 1907, when the fate of the retarded was prison and the poorhouse, a Massachusetts physician came south to try something more humane. Softspoken and generous, Dr. Joseph H. Ladd opened the Rhode Island School for the Feeble-Minded on a farm - where, he believed, his charges could lead satisfying lives in safety. In January 1908, eight retarded men moved in with him and his wife into an old farmhouse.

By 1913, more than 100 men and women lived at the institution. Men who were capable worked the farm, while women sewed and did housework, and children did what they could. In his annual report that year, Ladd outlined his plan to build a laundry, power plant, hospital and more dorms.

In 1925, the population of the institution, by then known euphemistically as the Exeter School, passed 500. Not all were retarded: Many were epileptic, sexually promiscuous or unemployed, sent away by doctors or judges seeking solutions to people they considered nuisances. Ladd believed that with the right treatment, some of Exeter's "high-grades" could be discharged, and a small number, less than 10 percent a year, were. For the rest, passage through life was marked only by the change of seasons.

Overcrowding, understaffing and insufficient funds contributed to worsening conditions in the 1950s and '60s, when the institution's population peaked at slightly more than 1,000. The parents who founded RIARC demanded that their retarded children be served in their communities, mostly in Greater Providence, not behind bars in the middle of 550 acres miles from where they lived. By the '70s, many believed Ladd had to close.

None had more conviction than Healey.

One day in 1976 while touring a back ward, he saw a woman naked on the floor with what he thought was a red ball against her naked bottom. It wasn't a ball, but her rectum - protruding out.

"That's just a prolapse," the supervisor said. "It falls out and we just push it back."

Healey's eyes met the woman's. She couldn't speak, but Healey imagined what she would have said if she could: "If you're an advocate, why do you let them do this to me?"

"It's a snakepit there," Healey said at a news conference he called a short while later.

But little happened for a year, until September 1977, when the Journal-Bulletin began a series of investigative pieces documenting neglect and abuse at Ladd. The paper found that fire protection was inadequate, residents routinely had teeth extracted without proper anesthetic, and doctors failed to diagnose broken arms, infections and diabetes. Because of bad care, the paper reported, some had died.

A state was shocked. Ladd had many dedicated employees, but their quiet contributions were lost in the ensuing controversy, which led to a federal suit by RIARC and the firing of the superintendent, Dr. John G. Smith, who had succeeded Dr. Ladd in 1956. In a short time, Gunther was promoted and Carl hired from Ohio, where he was known as an administrator who meant business, and who believed the future was in the community, not behind brick walls.

Even before the scandals of the '70s, Rhode Island had been moving away from Ladd. Voters in 1967 approved a $1.5 million bond for community centers, and in years to come would approve tens of millions more for group homes and other programs. As Gunther and Carl improved conditions for Ladd's remaining residents, they accelerated community development.

Last year, for the first time since 1913, the institution's population dropped below 100.

Yesterday, it hit zero.

Last day on ward

Jimmy Lassiter was up early on his last day at Ladd, which came a half-century after his first. Staff washed him, combed his hair, brushed his teeth, dressed him in black trousers, Notre Dame T-shirt and basketball shoes, and gave him his medications. Breakfast was Tang and oatmeal with sliced bananas. He ate with a spoon, and a Ladd pillowcase for a bib.

Lassiter was 9 years old when he was sent to Exeter, in January 1940. His mother had died in childbirth the summer before, leaving six children 8 and under. Jimmy was profoundly retarded and had a temper. He spoke only when angry, and only a word or two then. His father couldn't handle him.

A working farm had little use for a "low-grade," and so Jimmy spent much of his life on back wards. In recent years, as Ladd improved, he was prepared for life in a group home. After breakfast yesterday, he went to his classroom. His clothes were packed and an attendant mopped his old room. He ate lunch with his four friends and they were gone. Their new home is a group home in Hope Valley.

Many uses have been proposed for Ladd, including as the site of a corporate park, but no decision has been made for disposition of its more than 300 acres and 42 buildings, some beyond rehabilitation. (Ladd's farmhouse has been demolished, but the site where it stood is being preserved as a memorial, to be dedicated later this spring.)

All officials would promise yesterday is that Ladd will not be forgotten, nor will it ever come back.

As they reminisced about how long it took to get there, Gunther, Healey, Carl and others praised Ladd's employees, who rather than fight the closing, as colleagues in other states have, agreed to transfer to community homes run by the state. They also praised former Ladd residents, who proved to an initially skeptical public that they could live in neighborhoods, just like anyone else.

"Nobody," said Carl, "will ever be able to throw away a human being again."

* * *

CAPTION: LAST MEAL: With the aid of an attendant, two of the remaining five residents of the Ladd Center, Raymond Guarnieri, left, and Anthony Stanton, have breakfast before leaving for a group home.

Journal-Bulletin / KATHY BORCHERS

* * *

CAPTION: THE WAY IT WAS: A ward in the Ladd Center, jam-packed with beds, in 1973. The center was closed yesterday.

Journal-Bulletin files

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Wednesday, March 9, 2016

CAR CRAZY featured in AAA's Home and Away Magazine

Home and Away, the magazine of AAA chapters in Ohio, New York, Pennsylvania, Oklahoma and South Dakota, featured a short excerpt from car Crazy in the March/April issue. Thanks, AAA!

And if you would like to read an excerpt, visit the book site.