The question was, should they let them do this to their son?
The Velezes were torn. Yes, the Behavior Research Institute used electric shock to get young people to alter dangerous behavior, and, yes, their son, James, unarguably needed help. But shock my son! his father mused. He feared, ''Once you sign the papers, they'll do what they please.''
But what could he say when his wife and son insisted there was nothing else, that this might be James's final chance to become like everyone else?
''I went along because we were desperate,'' Mr. Velez said. ''When you get desperate, you will go to the four corners of the earth to find something.''
They had already visited the other three.
For reasons that defied medical science, James Velez felt bugs crawled over him, and he scratched himself until he bled. Seventeen years old in the summer of 1991, he had lived in institutions since he was 7. But the maddening worst of his anguish was that he was within the range of what is considered average intelligence, and so while he couldn't stop destroying his own body, he knew full well what he was doing. Cloistered in a developmental center in Queens, he had deteriorated to a mass of sores, and was so despondent his parents thought he might kill himself. Frustrated at their inability to help him, educational officials had suggested the Behavior Research Institute, a bristlingly controversial place in Providence, R.I., that took the children no one else wanted.
In the vast exodus of the developmentally disabled from America's institutions, most of the easy cases have already begun lives in the community. What to do with the really hard ones, the James Velezes, is a matter of strident debate. There is not often someone who wants to get them out, and many people insist they should stay in -- for their own sake, or for the sake of society. There is no tidy protocol, no ''Fill out this form in triplicate and wait 30 days.''
Indeed, in the case of James Velez, only because he traveled to the very end of the institutional world did destiny intervene. Only by luck did he come to the attention of a small Manhattan social-services agency called Job Path, which nursed the mighty hope that he could have his own ordinary life in his own home, maybe even college and a real job, something almost unheard of for someone of such profound disability. For Job Path saw him as a vehicle to prove the idyllic notion that even those shunted to the subbasements of institutions belong with everyone else. But this was later -- after B.R.I., after the shocks.
What the Velezes found at B.R.I. (it is now called the Judge Rotenberg Educational Center, and recently moved to nearby Canton, Mass.) was a school and treatment center that employs a rigid blend of rewards and what is called aversive therapy. Though it says it stresses rewards, it is the punishments that have gained it renown.
B.R.I. sprayed ammonia up students' noses. It shot water in their faces. It made them eat jalapeno peppers. Lately, however, its aversive of choice has been jolts of electricity. It is a method much out of favor, and is used nowhere in such concentration as at B.R.I. (Of 44 students there now, the center says 17 receive shock.)
Some parents and behavior experts praise B.R.I. as a wondrous place. Many others assail it as barbaric. It lies at the flash point of a marshy debate about how to treat the most extreme behavior problems.
In recent years, many in the disability field have endorsed the idea of letting the disabled control their own lives. Don't play games of rewards and punishments, they say, and reduce people to laboratory rats. Instead, determine what truly makes them happy and give it to them.
But B.R.I.'s director, a psychologist named Matthew Israel, likens his institute to ''an intensive care unit.'' Michael Flammia, B.R.I.'s lawyer, offered this analogy: ''What if I told you I was in a room and a guy was shoving a knife into another person's stomach? Sounds awful. But what if I told you I was over at Mass General Hospital and I was watching surgery? We're talking about kids who have blinded themselves in one eye and they may do the other.''
The extraordinary was the ordinary at B.R.I. -- a child who batted his head against pointed objects, another who ate corkboard -- but when James Velez arrived in August, he was one of its worst cases. Covered with wounds, he nearly died while having an infected toe amputated. An aide determined that he rubbed or scratched 2,955 times a day, once every 30 seconds.
His life became highly controlled. His daily routine was broken down into behavioral ''contracts''; bed-wetting, for example, would violate a contract. When he failed to earn food, he was fed a ''loss of privilege'' meal -- a watery blend of chicken, mashed potatoes and spinach. He said, ''It tasted like nothing.'' Slight as he was, he said he sometimes went days with not much that he liked to eat.
He also received monetary equivalents for proper behavior (and lost them if he was rude or impatient or didn't finish a meal in 15 minutes). Only with these earnings could he buy certain activities: $3 of B.R.I. money bought a three-minute chat with another patient; $15 bought a phone call to a friend, $20 a call to his mother. (''Isn't that freedom of speech?'' he once complained. ''People on the outside don't have to do that, do they?'')
B.R.I. had microphones and cameras everywhere, including bathrooms, to guard against injury and staff abuse, but the surveillance felt like persecution. Many of his housemates could not even talk, and he again felt socially isolated.
And then there were the shocks. Five electrodes were always affixed to his skin: one on his torso, one on each arm and leg. An aide carried a radio transmitter known as the Graduated Electronic Decelerator. If James scratched or rubbed, he got a two-second jolt through one electrode.
The first week on the G.E.D., his records show, his instances of dangerous behavior fell to 201, under 30 a day. Everyone was highly encouraged.
Although scratching was his primary behavioral problem, he was eventually shocked for 72 actions. These included things B.R.I. felt were part of a ''chain'' of self-abuse: hiding parts of his body so he could scratch undetected, crossing his legs. But he was also shocked for things more on the order of cantankerous behavior: noncompliance of any sort, yelling, cursing.
He has often been incontinent. At night, an aide woke him every two hours to usher him to the bathroom. If he soiled his bed, he would be shocked as he slept. He would be shocked for ''tensing up'' while asleep. The interrupted nights left him drowsy, but if he dozed during the day, he would be shocked.
Already suffering a low self-image, he would become embarrassed when out in public, for there he would be tethered to an aide like a bizarre human lab experiment.
He was selective about what he told his parents; he did not want to worry them. But some days he received more than 100 shocks. Their monthly frequency increased to about 2,000 after nine months, then began to fall. ''I didn't like it that they used it for every little thing I did,'' he said. Often, he fought off the shocks, crying, ''No. No.''
His self-mutilation decreased significantly at B.R.I. Ultimately, he was removed from the G.E.D. during the day, and averaged fewer than 200 shocks a month. Yet Dr. Israel said he might never be entirely freed of shock, like someone with vision problems who always needs glasses.
Increasingly, James could not accept the price of this improvement. Something began to collapse in him. He had been enclosed too long.
It was at this point that certain strands of serendipity began to intersect, that he became not just someone with a deformed life but a torch coveted by much broader forces. As they say in mergers and acquisitions, this is when he was put into play.
By state law, all patients getting shock treatment at B.R.I. had to have lawyers as their advocates, and in December 1993, he was assigned a young lawyer named Donna Loomis. Ms. Loomis worked for the Center for Public Representation in Newton, Mass., which opposed B.R.I.'s practices, and she found herself dismayed by his life. She sought the advice of Fredda Brown, a Queens College professor and consultant on people with difficult behaviors. Ms. Brown had ill-disguised contempt for aversives, and after visiting Mr. Velez, she concluded he would blossom in the outside world.
Ms. Loomis spoke with Daisy Velez, and for the first time, she learned how unhappy her son was. ''Then he opened up to me,'' she said. ''That's when I wanted him out.''
Julio Velez, though, quite emphatically did not. He was not convinced his son had improved enough, though mostly he feared the impact on his own life. The years of depression as he had grappled with his son's insatiable needs were fresh in his mind.
''In the years he was away, the family was able to recuperate,'' he said. ''I was prospering. I had my daughter. I didn't think I was prepared for him to come back. Daisy said, 'No matter what, he's coming home.' I said, 'Don't expect too much out of me.' ''
It was then that Job Path took on the case, and soon a bit of saber-rattling erupted. Dr. Israel felt it was reckless to believe that someone so troubled could be plopped into an apartment of his own. You may kill yourself if you leave, he told Mr. Velez. Michael Flammia said, ''It looked like the anti-aversives were trying to claim a head.''
His parents felt B.R.I. was picking on him. ''The last two home visits James made, the staff was constantly on his back,'' his mother said. ''I made James pancakes. The attendant with him told me to get out of the way and she was going to give him a shock. She said he was rubbing. He was sitting eating pancakes. I got all upset.''
Fears congealing in her mind, she decided that, even though Job Path wasn't remotely ready to proceed, he had to be removed at once. He was in a Boston hospital with a hand infection. Before dawn one day in November 1994, she and her nephew drove up, checked him out of the hospital and brought him back to New York.
Mr. Velez was placed temporarily at the state's Brooklyn Developmental Center, in a monastic room with an air of exhausted promise on a wing with severely retarded patients. He was put back on a regimen of drugs that he said left him sluggish. He had arrived largely healed; his first night there, he scratched his legs horribly.
''I got so depressed,'' his mother said. ''It was like the old times.''
$231,008. Kathleen Broderick stared incredulously at the big number. A quarter of a million dollars a year for one life?
As a deputy director of the New York City arm of the State Office of Mental Retardation and Developmental Disabilities, Ms. Broderick routinely reviewed budgets to grant people in institutions lives in the community. But as she sat in her office in February 1995, she knew she had never seen a budget, or a case, like this one.
She had no quarrel with the idealism. But as much as this undertaking was about humanity, it was also about dollars and cents. And the place where Job Path's warm vision collided with the coldness of a price tag was on Kathy Broderick's desk.
In their desire to relieve his agony, of course, his champions hadn't stopped to make certain comparisons -- to reflect, say, that college graduates were bunching three or four to an apartment, or that welfare families were shoehorned into dismal projects, who knew how many to a bed. Nor did they balk at the fact that, for that same quarter of a million dollars, three, perhaps four, disabled people on the state's yearslong waiting list could get their own ''normal'' lives. Social policy, it seemed, often got determined in a wind tunnel, insulated from the mighty forces of the outside world.
But now, over in the outside world, Kathy Broderick found herself pondering just what that princely sum would buy, and whether, when you balanced the competing interests, the state would even be getting its money's worth, especially given the uncertain trajectory of Mr. Velez's life.
It is usually much cheaper for mildly and moderately disabled people to live outside institutions, largely because of lower labor costs. New York calculates it costs an average of $120,000 to house someone in its institutions and $80,000 in the community. But with the most serious cases, all those numbers tend to rise, and some people might even cost more on their own.
And while life in a group home would surely be cheaper, many people in the field these days, Job Path included, felt smaller was better. A group home, after all, was so laden with rules that the residents often did not see it as their place, but the state's place. Mr. Velez wanted his own place, and Job Path felt bound to give it to him. (His advocates did hope that, eventually, his life would cost less -- that he would not need constant care and could hold a job.)
But while Ms. Broderick approved virtually all budgets, she also had a cap: $60,000 a year for residential costs and $17,000 more for day treatment programs, a total of $77,000. Anything higher needed the blessing of the Department of Budget. Twice, she had sent budgets there, each a bit over $90,000. Not only wasn't this budget in the neighborhood, it wasn't in the same solar system.
Yet she also wondered if it would be big enough. (At B.R.I., his annual bill had been $236,979.) Ms. Broderick believed in something she called the ''dignity of risk'': A person would have dignity in his own place, and that was worth a certain amount of danger. But how much?
''This is a scary proposition,'' she recalled thinking. ''Not that James poses any danger for the community. He wouldn't hurt a fly. But himself.''
Finally, she had to break the news to Shelley Azumbrado, Job Path's financial officer: only divine intervention could get the $231,008 figure approved.
Ms. Azumbrado could understand. But when she revisited each item, the budget seemed low. The big thing was round-the-clock aides. Pay $10.75 to $12 an hour, plus modest benefits, and you were up around $150,000. Ms. Broderick had been feeding her state guidelines. She figured $250 a year in clothes. ''That's a laugh,'' Ms. Azumbrado thought. Think $200 a month for food. ''What?'' she said. Was he going to live on canned beans?
She went back to work, relying more on part-timers who wouldn't get benefits. She snipped here and there. This still left the imposing sum of $221,146. In August 1995, Ms. Broderick sent it on to the budget people, hoping they would not laugh.
Very deliberately, he dressed his food with duck sauce. His gaze roved idly around the Chinese restaurant to a mother with a child squiggling in her lap. From time to time, an amorphous unease seemed to settle over him and he reached behind his neck and scratched.
Alertly, Lisa Pitz pulled down his arm and massaged his shoulders. For the moment, that quieted the impulse. As Job Path's housing coordinator, she was the day-to-day point person on the project, and she knew his habits like a favorite melody.
''Calm down, James,'' she said soothingly.
''It itches,'' he mumbled, shrugging his shoulders against the demons inside. He yawned freely and speared some food.
As often as she could, Ms. Pitz took him out like this, for her to learn more about him and for him to sample the world. They had been visiting an apartment in Ozone Park, Queens, that Mrs. Velez had found. It was a pleasant enough place in a two-story brick building with a soupcon of lawn. The rent was $900 a month, and it had been agreed that he would take it, with Job Path footing the bill pending news on the budget.
Leaving the restaurant, they walked lazily through the urban gumbo of the afternoon. The subway racketed overhead, emitting blue sparks. Mr. Velez walked with his unsteady gait, his head wobbling.
They came on a clothing stall, and he bought a pair of sunglasses.
''You look good, James,'' Ms. Pitz said. ''You look sharp.''
''Yeah,'' he said. ''I'm a movie star.''
He cherished these moments of affirmation, these tastes of the unexceptional that he so dearly wished for.
He squirmed and squirmed, his face assuming the concentrated expression of combat, fighting the urge to scratch.
They walked on.
In November 1995 came the answer on the budget, and it was no. Months went by, a slow and meticulous waltz with the numbers that got nowhere. The effort, it seemed, was meant to detour, pivot and dance before reaching its destiny.
What about a roommate? the state asked. This violated Job Path's desire to give Mr. Velez what he wanted. But there weren't a lot of alternatives. Job Path homed in on a man in a Queens institution who was on a similar intellectual level. Twice before he had joined group homes only to be sent back. He had set fires and punched aides. Yet the state wished him released. He was a vehicle Mr. Velez could ride to freedom.
In February, a budget of $247,928 for two was put together. It was then that support workers for the other man visited Mr. Velez and rejected him as too challenging.
His advocates tumbled into a deep gloom. His mother was so jumpy she feared a heart attack. An awful weariness washed over Lisa Pitz. She was 29, tireless, with a warm smile easily won, and had spent more time on this quest than anyone. She visited him every week, pumping up his fragile confidence. Now she could not help but see disaster dancing like a shadow next to her.
''There are days I come home and sit on my sofa and cry for an hour,'' she said. ''I just can't see any progress in getting him out. And James is so depressed, and he takes it out on me. There are days when he won't stop scratching, days when he won't even get out of bed. I have fantasies of quitting. I have fantasies of going back to waiting tables again like I did in college, just to get out of this.''
Why was she so devoted to him?
When she spoke, it was to say, ''I feel I'm the only one. If I stop, who would take him on? I keep looking at this person and asking why he doesn't have his life. Sure, it's just one life. But I think one life is a lot.''
Building 2. A locked door into a wing (bang until an aide opens it), and at the end of the first hallway to the right, the small boxy room with the hand-colored ''Keep Out'' sign. This enclosed in a dour, sprawling place, the way it is in the movies. The Brooklyn Developmental Center.
On the small television this afternoon was the drone of ''Cosby'' reruns and ''Power Rangers.'' Mr. Velez languished on the bed, his eyes glued to the shimmying screen. A light cast its sallow glow.
Movie posters adorned the soiled wall, along with a hand-drawn sketch of a brutish guy meant to be Mr. Velez. ''What are you staring at?'' it said.
Mr. Velez said, ''As you can see, there's not much here.''
He felt bad vibrations. He disliked his wing mates. He said they stole his things. He had put padlocks on his closets. He hated being told when to do things. He detested hearing aides chanting, ''C'mon, move it,'' ''Hurry up there.''
He had expected to be there a few months. And yet seasons had come and gone -- more than a year and a half's worth -- and still he waited. The center said it did the best it could, though his gloom made him recalcitrant. Pictures of him when he arrived made it clear that he was physically worse now. He had been in and out of the hospital with cellulitis on his hands, infections from the scratches. He broke his ankle. If he deteriorated too much, Job Path realized with glum apprehension, how was it going to handle him if he did get out?
An aide poked her head in. Someone was supposed to watch him at all times. He asked: ''Are there any trips soon? I'd like to go out and do something.''
''Nothing right now,'' she said. ''Maybe later in the week.''
He said, ''I don't get out much.''
Outside, channels of shadow fell on the institution. Squirming on his bed, trying not to scratch, Mr. Velez stared at the TV.
The young man's name was Manny Sanchez, and he was short and matchstick-thin. He was born with a form of Down syndrome and his I.Q. had never risen beyond 36. He lived with his sister in Brooklyn. He was fairly independent -- he cooked himself waffles and macaroni and cheese -- but could not travel alone. He went to a day-treatment program, a sort of adult day-care center, and would sweep up at a dry cleaner. His dream was to work at McDonald's.
He was 25, and for nearly 12 years had been waiting for a group home or apartment. Asked why, he would say: ''Because I'm a man. A man lives on his own.''
Mr. Velez liked him a lot. Intellectually, Mr. Sanchez was a poor match as a roommate, but his low needs would make the budget work. So Manny Sanchez it would be.
The new number was $207,511 for two people. Ms. Azumbrado had budgeted for even more part-time aides and had sliced administrative costs to the bone. In truth, since Mr. Sanchez demanded little supervision, most of the money was for Mr. Velez. The budget went to the state on June 21.
A month later, it was approved at $173,844 (a blend of state and Federal funds). More than $120,000 went for the aides alone. Mr. Velez ended up with $3 a day in personal allowance.
Subsequently, the state also granted him $15,940 a year for ''day habilitation'': career training, money management and the like. Mr. Sanchez already got a similar amount for day treatment. Add it all up and it came to a bit over $200,000. Moreover, $26,314 was allocated for hiring and training the staff, and for furnishings.
And so they had hit their bonanza. But there was no time for self-congratulation.
Oh, it was difficult putting a disabled man in an apartment. Ms. Pitz had to appear before the local community board, give the developmental center a precis of how he would spend his days. Most important, aides had to be recruited and trained. Scores of people responded to ads, but most could barely care for themselves. Finally, Ms. Pitz managed to hire three full- and four part-time aides, including a forklift operator, a recent Berkeley graduate and a paraprofessional at United Cerebral Palsy.
There was one last step: an ''exit meeting.'' There would be a lawyer there named Ronald Karben, who worked for the Mental Hygiene Legal Service, a court agency that acts as the advocate for anyone supported by the state. He didn't get many ''liberty'' cases anymore. As he remarked, ''You don't have that happen all that often, because the people left are lower-functioning and don't ask to get out.''
Job Path had heard he was tough, that if he was dissatisfied, he could stop the whole thing, delay it who knew how many more weeks or months. What more rough edges would they have to bevel?
The exit meeting on the subject of the discharge of James Velez as an institutional ''consumer'' was held on Friday, Nov. 8, 1996, and there was some rain. The deflated, pewter-colored sky was of the sort that does not give people hope.
Nineteen people attended, a virtual Congressional committee of B.D.C. specialists, Mr. Velez's main advocates and his parents. Presiding over it was Alice Bassiur, the placement coordinator. James Velez came in a windbreaker and a baseball cap plugging radio station ''Hot 97-FM.''
There was an edgy tingle in the air. Fredda Rosen, the director of Job Path, wore her lucky necklace. Lisa Pitz woke up at 4 and stayed up. Daisy Velez had had a fitful night, too. Her mother rose at 7 and recited a special prayer. A lot of adrenaline had been generated.
Ms. Bassiur asked Mr. Velez to tell about his apartment.
''It has a kitchen, two bedrooms and a basement,'' he said.
''Did you like it?''
''Yes,'' he said. ''I loved it.''
Ron Karben spoke up with a stiff-as-starch look: ''Would you describe what you mean by 24-hour supervision?''
Ms. Pitz told about the aides. He asked about a nurse to monitor the administration of medication. She said a nurse would visit weekly, maybe not always the same one.
''The medication must be on the license of a nurse,'' Mr. Karben said. ''You may be deficient immediately.''
Color drained from everyone's face. Then someone spoke up and said she thought the arrangement would be all right.
Mr. Karben fired some questions about emergency contacts. (He later said, ''I knew a lot of care had been put into this. I knew it was O.K.'' He also expected a bumpy ride. ''He is going to have to learn to live in the community and how to deal with the insensitivity of some people. I think he will go up five steps and down three.'' But he had no doubt it was for the best: ''James will be able to grow and develop in a way that he could not here.'')
''I have one more question,'' Ms. Bassiur said. ''Can James transfer?''
There was dead silence. No one seemed to grasp what was being asked.
''You mean, is he ready to move?'' Ms. Pitz said, realizing that the final hurdle had been cleared.
''Yes. James can leave.''
Next: Into the real world.