Another busy week for The Arc. Today I head for Freeport to meet with the new Exec at Malcomb Eaton, Craig Joeston. Wednesday the Executive Forum meets in Lisle and on Thursday we gather for our Health Care Reform Seminar.Our Living with Autism Conference last week was an outstanding success. Here is a picture of me with Dr. Temple Grandin.
Last Friday, The Arc participated in a national presential debate on disability issues. Here is Arc CEO Peter Berns with Ted Kennedy Jr.
Familiar story from the New York Times on closing institutions.
After Decades in Institutions, a Bumpy Journey to a New Life
Grant Blankenship for The New York Times
After nearly 35 years in a state hospital, Wally Burns, 51, moved in May to a group home, part of a new effort in Georgia.
Mr. Burns with Sandra Robinson, a worker with Arc of Macon, which runs the group home where he lives.
“You have a new home now,” his attendant told him, reminding him of the big move only hours away. “We hope you’ll like it.”
Mr. Burns’s blue eyes wandered as he listened in silence. He has not spoken a single word since he was 5 years old.
For more than three decades, he has lived here at Central State Hospital, known in its darkest days as the home of the psychotic, the manic and the hopeless. For generations, invalids here have sipped life through feeding tubes, grown men with the minds of children have hummed tuneless melodies and patients tormented by delusions have banged their bodies against the walls with wordless screams.
No one dreamed that Mr. Burns would ever leave. He is severely mentally retarded and his doctors and parents assumed he would spend his final years here. Instead, Mr. Burns, who is 51, was preparing for something utterly unexpected: a life beyond the hospital walls.
“You ready to move?” a hospital coordinator asked Mr. Burns, who was hunched in his chair, seemingly oblivious to the question. “You ready?”
Once viewed as outcasts to be shunned and isolated in institutions, hundreds of Georgia’s most disabled citizens are taking their first tentative steps back into society. Their fledgling journeys, marked by uncertainty, jubilation and some setbacks, are unfolding as officials embark on an ambitious plan to profoundly reshape the lives of the cognitively and physically impaired.
It is a new strategy for Georgia, one of several states responding to mounting pressure from the Justice Department, which in recent years has threatened legal action against states accused of violating the civil rights of thousands of developmentally disabled people by needlessly segregating them in public hospitals, nursing homes and day programs.
Mississippi, which has nearly 2,000 developmentally disabled people living in its institutions, began moving dozens of them out this spring. Virginia, which reached a settlement with the Justice Department this year, expects to move more than 400 people out by the end of the 2016 fiscal year.
Here in Georgia, about 360 developmentally disabled patients have left state hospitals over the past two years, health officials say, moving mostly into small group homes that house four people each. About 400 more will leave over the next three years, nearly emptying the state’s institutions of people with severe mental disabilities, autism and dementia.
Advocates for the disabled are hailing the move as akin to the demise of racial segregation. For the first time, people who have spent decades in hospital wards will live in the community, have some say in their day-to-day activities and get the opportunity to meet and mingle with their neighbors.
But the transition has also been fraught with anxiety. Over the years, most of the patients have been middle-aged and older, with little memory of their childhoods outside the institution. And many of their relatives — who viewed the hospital as a safe haven, not a prison — greeted the decision to move them with fear and outrage.
Some advocates for the disabled worry that people once warehoused in public hospitals will simply be warehoused in group homes, which in some instances have become nests of abuse and neglect in places like New York.
Georgia officials say they are expanding the network of community services to support the newly discharged patients, to ensure that they do not end up on the streets or back in a hospital.
Elizabeth Jones, the court-appointed monitor charged with overseeing the discharge process, commended the state for its efforts, saying officials had moved people into the community more quickly than expected. But she warned that most discharged patients were still living segregated lives, spending their time with other disabled clients in the group homes and in day programs.
She also warned that some people had ended up in unsanitary homes with inadequate staffing and programming, a problem that state officials say they have taken quick action to correct.
“We are proud of this process,” said Frank W. Berry, head of the state’s Department of Behavioral Health and Developmental Disabilities. “We also know there are very important areas where we need to improve.”
A Family’s Anxiety
Becky Burns, Mr. Burns’s mother, wept for days when she learned of the impending move. She and her husband adore their son, who loves children’s puzzles, fried chicken and long drives in the family’s Suzuki S.U.V. But hospital officials said he has the intellectual capacity of a child, makes himself vomit when he is anxious and picks at his skin until it bleeds.
“We’re too old to look after him now,” said Mrs. Burns, who is 71 and whose husband, Wallace Sr., has been incapacitated by a stroke.
She begged hospital officials to help her find a safe, clean place for her son and nearly despaired when the options she was offered were group homes in crime-ridden neighborhoods. It was only when she met the welcoming staff at the Advocacy Resource Center, known as Arc of Macon, a nonprofit group that was building a new group home just 20 minutes from her house, that she warmed to the change.
On moving day, Mrs. Burns sat down at a conference table here at Central State Hospital with her brother, Charles Massey Jr., and nearly a dozen hospital staff members and officials from the Arc of Macon to review the details of her son’s care.
A doctor went over all of Mr. Burns’s ailments and medications (Fosamax for osteoporosis, Keppra for seizures, Prevacid to prevent vomiting) and described his challenging behaviors.
“Don’t make him nervous,” the doctor warned. “He vomits right away.”
Mr. Burns huddled in a pink plastic chair in a corner of the conference room as the conversation ebbed and flowed around him. Eyes downcast, he rolled and unrolled a blank piece of paper as his mother proudly described how he would have his own room for the first time.
Raymond McCrea Jones for The New York Times
To help him adjust, staff members started taking Mr. Burns to a day program several times a week in a nearby town.
Raymond McCrea Jones for The New York Times
Mr. Burns is still getting used to the day program.
He would have a new bedroom set and home-cooked meals, the trappings of an ordinary life. She reminded the hospital officials not to forget his favorite shorts, the ones with the elastic waists — “That’s been packed, Mrs. Burns,” they reassured her — and the medals he had won for walking and running in the Special Olympics.
“That’s important to him,” said Mr. Massey, Mr. Burns’s uncle. “That will remind him of his time here.”
The hospital staff handed over Mr. Burns’s birth certificate, his Georgia state identification card, his Medicaid card and his prescriptions to the Arc of Macon representatives, Mr. Burns’s new caretakers.
And then, on May 30, nearly 35 years after he was first admitted here, Mr. Burns shuffled through the hospital’s glass doors for the last time. He held on tightly to an aide’s hand and blinked in the blazing sunlight as he walked carefully down the four stone steps to the sidewalk.
“Come on, Wallace,” the attendant said as she guided him into his seat in a silver Nissan sedan and strapped on his seat belt. Mr. Burns did not look back as the engine sputtered to life.
“I think he’ll like it,” said his mother, her voice brimming with hope, as she watched the car pull away.
Mr. Burns stepped calmly out of the car when he arrived at his new home in Macon about 40 minutes later. He walked silently through that front door without any hint of the turbulence and anxiety bubbling within him. But it was there.
He would not eat a single meal for two days.
Something Not Right
Mrs. Burns still remembers those first few months in 1961 before everything went wrong, when her firstborn seemed like any other sweet-tempered baby with sky-blue eyes. “He was so smiley, so happy,” she said. “He was such a good baby.”
But as time passed, it became clear that something was not right. Her son did not hold his head up by the time other babies did. He could not sit upright. He did not crawl or walk or speak.
She took him to a doctor and discovered that he had been irreparably damaged by the trauma of his birth: His umbilical cord had twisted around his neck, depriving him of precious oxygen. And he had been delivered with forceps, which may have exacerbated the injury to his brain, the doctor said.
He then told Mrs. Burns that her boy would probably never sit, walk or talk. “We’ll see about that,” she said, and devoted the next few years to proving doctors wrong.
By the time he was 4, she had taught him to walk and to say simple words like “Mama,” “Daddy” and “Gama” for Grandma.
But he regressed when she gave birth to twin boys a year later and could no longer focus exclusively on him. He stopped speaking and became increasingly difficult to manage. He would stick his fingers into electrical sockets and whirring fans. He would smash light bulbs with broom handles and unlock the side door and flit aimlessly down the street.
The doctors told her that he needed to be institutionalized, and her husband and parents agreed. In the mid-1960s, most of the developmentally disabled patients admitted to large state facilities were children under the age of 12. States offered virtually no support to families hoping to keep their sons and daughters at home and no education for those children living outside institutions.
So Mrs. Burns handed over her son to an institution in Gainesville, Fla., two hours from Daytona Beach, where she and her husband were living at the time. He was screaming and crying and clinging to her legs. She was crying, too. He was just 8 years old.
“They told me it was the right thing to do,” she said. “But all I could think of was that I was giving away my own child.”
Eight years later, when the Burnses moved to Georgia, he was transferred to Central State Hospital here. Mrs. Burns had relatives who worked at Central State and they checked in regularly on her son, finally giving her some peace of mind.
At the program, Mr. Burns has the opportunity to dance, socialize and learn other skills.
A Difficult Transition
Over time, she and many of the other parents with children at the hospital learned to find comfort in the familiar rhythms of institutional living that surrounded them. Central State had been there long before they were born and they prayed that it would always be.
By the 1950s, the hospital, which opened in 1842, was the largest psychiatric institution in the country, with nearly 13,000 patients. Over the passing decades it survived, even as its population dwindled, despite findings of inadequate care and suspicious deaths and the waves of deinstitutionalization that emptied out other hospitals.
By January, only 99 patients remained, including Mr. Burns, who had entered the hospital as a teenager and would leave it as a middle-aged man marching toward the twilight of his life.
His blond hair had gone gray. He had learned to dress himself, to go to the bathroom independently and to play games like Connect 4. But after spending decades inside the institution, he had great difficulty adjusting to new people.
Hospital officials hammered out a plan that included a series of carefully calibrated visits to his new group home before he was discharged.
And on moving day, Mr. Burns seemed to recognize his new home, a red brick ranch with peach-colored roses blooming out front. He walked right in, through the living room, the kitchen and straight into his bedroom.
“He remembered his room,” said Patricia Stewart, one of his new caretakers. “He knew right where it was.”
But once in his bedroom, Mr. Burns promptly retreated to his bed, hiding under his midnight blue quilt. He emerged for a few minutes, in response to Ms. Stewart’s entreaties, but quickly returned to his bedroom.
Mr. Burns refused to eat for two days. And for several nights, he could not sleep.
Hospital officials thought that weekly trips to a day program for the disabled would benefit Mr. Burns, who had loved outings to the zoo and the state fair when he was at the hospital. So several times a week, the Arc employees started taking him in a white van to the town of Cochran, where he would have the opportunity to paint, dance, socialize and expand his skills.
But by mid-July it was clear that he was not adjusting as quickly as everyone had hoped.
At his day program, when staff members approached him, Mr. Burns forced himself to vomit at times. He stuffed small pieces of paper into his ears and then picked at his ears until they bled. He refused to participate in activities and withdrew deep into himself.
“He’s not doing too well,” Beverly Sullivan, director of the day program, said in late July. “He’s still very afraid. Whenever you try to talk to him, he shies away.”
Mrs. Burns remained confident that her son would weather the bumpy transition. She loved that he was living something akin to a normal life, celebrating his 51st birthday with a vanilla sheet cake in his new home. (Mr. Burns refused to eat any cake that day, but she was thrilled all the same.)
“I just keep praying for him,” she said. “It’s a big change.”
Andy Harrell, who runs Arc of Macon, the agency responsible for Mr. Burns’s care, echoed her feelings. He has taken in six patients from Central State since the spring of 2011, who all still spend most of their time with other disabled clients. He said his agency would increase their integration in the wider community as they adjusted to their new lives.
“There have been bumps in the road and a lot of adjustments really quickly,” Mr. Harrell said. “But we’re here to work through the difficulties. We’re going to do everything we can.”
By September, three months after the move, Mr. Burns appeared to be settling in. He had found a favorite chair in the living room, a comfort zone beyond his bedroom. He started going to the refrigerator on his own when he was hungry. He began helping bring in the mail and take out the trash.
He seemed to enjoy the company of one of his housemates, a blind, wheelchair-bound man, and to feel more at ease at the day program in Cochran.
On one recent morning, Mr. Burns stunned the day program staff by dancing — a slow, methodical march — when some disco music was playing. He is still reluctant to participate in group activities, and he still makes himself vomit at times, but when someone greets him, he raises an arm in an awkward wave.
The staff hopes that Mr. Burns will become more comfortable in groups. His mother hopes he will learn to use a computer. No one knows how much progress he will make or what setbacks he may encounter. But there is no going back to the life he once knew.
Central State is mostly empty now. The building where Mr. Burns lived was shuttered in June when the last batch of the hospital’s developmentally disabled patients was finally discharged.
It is hard to know what Mr. Burns makes of his transformed existence. He is still a man without words, who watches silently as the currents of life swirl around him. But he certainly understands now that he has a place beyond those hospital walls.
These days, he gets himself dressed in the morning and rolls his wheelchair-bound housemate to the door of his new home, ready for the van ride to Cochran. The world is waiting.
Tony Paulauski Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423