Great Oaks suit spotlights debate over care of retarded

THE BALTIMORE SUN

When you have an IQ below 30, a nervous system so poorly organized that you cannot chew or swallow, and a vocabulary that's limited to a tongue click, learning can amount to this:

Danny lies on a mat, his eyes fixed in a far-off gaze that, to a stranger, looks both sweet and vacant. To his left, a blinking light dances across a twisted filament in a jazzy, helter-skelter pattern that causes visitors to stop and watch with interest.

Danny's teacher hopes he will find it interesting, too, and will turn his head to watch. It's the type of purposeful reaction that, for Danny, would represent a huge leap in his education. But Danny is still looking the other way. Says Joanne Campbell, his teacher at the Great Oaks Center in Calverton: "If he ever gets past this, the next thing would be to have him respond to his name. If he responds, he would move his head."

Danny, say his care-givers, has made strides at Great Oaks, a sprawling institution in Prince George's County that is home to 250 mentally retarded people. He recognizes certain people and projects a warmth that has made him a favorite among the staff. And while he cannot speak a word, he draws people toward him by clicking his tongue.

Such strides infuse the staff with a sense of pride and purpose. But a stinging critique of Great Oaks by the U.S. Department of Justice has rekindled a long-standing debate over the quality of life for profoundly retarded people in Maryland's institutions, with some advocates arguing that the centers should not even exist.

It is a debate that has bitterly divided parents who care equally for their children but have come to different conclusions about what's best for them.

On one side, many parents and professionals say that centers like Great Oaks by their very nature stunt development and deprive people of the basic right to live in society. They insist that the state should move quickly to close its five institutions and place the 1,100 people who live in them in supervised group homes that offer greater comfort and privacy.

"There's no way in hell I'd put my son in an institution," said Lorraine M. Sheehan, the president of the Maryland Association for Retarded Citizens (ARC), whose retarded son, John, lives in a group home. The association has called on the state health department to close its institutions within five years and to move to a system of community care.

"In an institution, you don't have the freedom to get up and get an apple out of the refrigerator, to decorate the room in any way they want," she said. "It's just not normal living. Just because people learn slowly doesn't mean they can't appreciate having some control over their lives."

Equally vehement are parents like Anne Jones, whose 43-year-old son, Gary, fell into a depression during a brief stay in a group home when neighbors recoiled at his erratic and often bizarre behavior. She wishes that people who reject the concept of institutions would worry about their own problems, not hers.

She recalls how he once startled neighbors in a Washington suburb when he bolted from his home at 11 o'clock one night and wandered through yards banging on trash cans.

Another time, he shocked a neighborhood woman when he strolled into her house unannounced and uninvited.

"Society just does not accept him on his level," Mrs. Jones said. "He comes and goes at Great Oaks. At a neighborhood, there will always be people who will be afraid and will reject him."

Unapologetically, she insists: "I'd rather see my son dead than see him rejected by society. And I'm tired of educating society. I really am."

Events are pushing the argument toward a climax, with parents on both sides of the issue lobbying legislators, Gov. William Donald Schaefer and Health Secretary Nelson J. Sabatini to slow down or speed up the pace of deinstitutionalization.

The catalyst was the Justice Department threat, made in July, to ask the courts to force Maryland to spend up to $5 million making improvements at Great Oaks. Its July report, based on inspections from 1986 to 1990, charged that Great Oaks violated residents' civil rights by overmedicating them and by failing to provide meaningful therapy or a well-trained staff.

In a particularly disturbing criticism, the government charged that Great Oaks dealt with self-abusing patients by outfitting them with helmets and arm restraints rather than taking the time to wean them away from their injurious behavior.

For his part, Mr. Sabatini said the report was flawed because it focused on old problems that have all but disappeared. And Ted Bunck, who is in charge of therapeutic programs at Great Oaks, said the report greatly exaggerated the degree to which self-abusing patients are restrained. Only 12 residents, he insists, wear helmets, and only for sporadic 15-minute stints during the day.

Mr. Sabatini said he is waiting for Justice Department officials to visit the center again and hopes they will be impressed with recent improvements such as the hiring of additional psychologists and therapists.

Now, the health department must also contend with a federal lawsuit filed Friday by the Maryland Disabilities Law Center, charging that Great Oaks has physically and emotionally abused six residents.

The lawsuit cites the case of a 71-year-old woman who broke her leg and hip, allegedly because attendants did not lift her carefully. Then there's a 30-year-old man who allegedly received a black eye, a broken arm and a dislocated shoulder because Great Oaks deprived him of therapy that would direct him away from head-banging and other self-abusing behavior.

The suit does not charge that the staff deliberately hurt anyone.

"It's institutional indifference," said Steven Ney, an attorney for the Disabilities Law Center. "It's not that the staff is indifferent. They're probably trying to do the best they can."

Health department officials declined to comment on the lawsuit Friday.

In the suit, the law center asks the court to stop Great Oaks from admitting any new residents and to begin finding homes for residents who are able to live in the community. Lawyers for the advocacy group estimate that 200 of the residents fit this description.

Almost everyone involved in the debate acknowledges that institutionalization, in many ways, is already playing a declining role in the care of Maryland's mentally retarded citizens.

The institutionalized population reached its peak during the early 1970s. Then, as part of a national trend, the state moved steadily to favor neighborhood homes over institutions. By 1985, more retarded people were living in group homes than in institutions.

Today, three times as many people live in supervised homes in neighborhoods across Maryland as in large centers such as Great Oaks and Rosewood.

Dr. Lois Meszaros, director of the state's Developmental Disabilities Administration, predicted the institutions will continue to shrink but will not disappear altogether.

Money is not the issue, she says, acknowledging that taking care of people in group homes does not cost more than the $90,000 the state spends to house each patient in an institution.

Rather, Dr. Meszaros said she is concerned that institutions may continue to be the safest and most comfortable place for "medically fragile" patients who need ready access to medical specialists and high-tech equipment.

"I think you also have to look at the individual, what the individual wants and what the individual needs.

"If they want to go into the community, that's their right," she said, but she added: "Some of the people who have lived in institutions all their lives want to stay there."

Many Great Oaks families agree.

A few days ago, Helen Greenspan of Silver Spring was bubbling with joy.

"They've got her walking good and practically toilet-trained," Mrs. Greenspan said as her mentally retarded daughter, Robin, walked in a stumbling manner out of a treatment room at Great Oaks.

"My child is kept clean here, and she never comes home [on visits] with a diaper rash. If you look, you can find fault with anyone's home."

Robin, 31, wears a helmet to protect her from hurting her head during the violent seizures that can send her crashing to the floor. But Mrs. Greenspan was ecstatic over a recent innovation that, she said, provides an extra measure of safety for her daughter. It's a wide belt that fits around Robin's waist -- loosely enough so a care-giver can hold on from behind to steady Robin as she walks.

"I'm grateful for this belt," Mrs. Greenspan said. "I'm so grateful, I've got to tell you."

At midday, young residents like Danny -- lying beside the dancing light -- were engaged in educational activities, while older people were scattered across recreation rooms or in workshops where they earn wages by performing jobs like fitting washers over roofing nails.

In a recreation room, a man tinkered with the keys of an upright piano. Another sat nearby, holding a tambourine that shook from time to time. A man named Billy sat in a wheelchair, his paralyzed legs stretched horizontally on a metal support. His recreation therapist, Nancy Dudley, placed a plastic flute by his mouth, and he whistled a note.

"He may not look like he can do much," Ms. Dudley said. "But with a head pointer, he can play a keyboard, turn pages of a catalog."

Walking across the wide lawns of Great Oaks, Mr. Bunck surmised that many of the patients could make it in communities. But 111 people living at Great Oaks today have been rejected by agencies that run group homes because they were judged too sick or volatile to fit into a neighborhood setting.

"They've looked at these people and said no," he said.

It's a point that riles many of the advocates who have fashioned group homes for the retarded. Kate Rollason, executive director of the Calvert County ARC, insists that community agencies could house more patients if the state would free up money it is not spending on institutions.

If more money were available, she said, more people like Cheri could be moved out of institutions.

Cheri, a 21-year-old woman, is profoundly retarded and suffers from a degenerative neurological disease that is always fatal. She is the type of person some would argue who could only live comfortably at an institution like Great Oaks but is happy living with three other retarded adults in a modern home near Prince Frederick.

The other day, she looked peaceful while sleeping in her molded wheelchair, her spine bent in a C-curve because of the condition known as scoliosis. The living room where she dozed has a cathedral ceiling, soft furniture, a roll-top desk, oil paintings and track lighting. Down a hallway, her well-kept bedroom was packed with stuffed animals and dolls.

A rotating staff of counselors, therapists and housekeepers take care of Cheri and her housemates. They monitor the wild swings of her health and somehow find time to take her to the movies, church and events in Baltimore.

"Everyone can have a bedroom, and it doesn't mean you can't get the kind of support you need," Ms. Rollason said. "We need to look at individuals, not just great rooms of people."

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