Retarded Woman’s Story : Move Out of State Home Left Her Gaunt, Incoherent

When Jennifer Campbell left Camarillo State Hospital 3 1/2 years ago to live in a private community care home for the retarded, she was a chunky 130-pound Special Olympics competitor who was able to take care of most of her personal needs, carry on basic conversations and write simple letters.

When she returned to the hospital last month, she looked “like she (was) right out of a concentration camp,” said Alice Meeks, a senior psychiatric technician at Camarillo.

The 30-year-old woman--who is diagnosed as both retarded and psychotic--weighed a skeletal 95 pounds, was incontinent and could only jabber and scribble incoherent messages when she was readmitted to Camarillo on Nov. 22.

Her eyes were dark and hollow, her cheeks were sunken, her face was lined and drawn and the bones of her body poked against her flesh. Some staff members who had worked with her in the past did not even recognize her.

The story of Jennifer Campbell is a case study of why many parents of retarded children in California are fighting to keep their children in rather than out of state hospitals. It also illustrates the frustrations and uncertainties parents face in trying to find care for retarded children.

Jenny, as her family calls her, was born Sept. 8, 1958.

She didn’t start talking until after her fifth birthday, according to her father and stepmother, Andrew and Rhonda Campbell of San Marino. When Jenny did begin to talk, she often spoke to hallucinations. She would sometimes sit in the back yard and carry on long conversations with people no one else could see.

Her parents were unable to toilet-train her. She had to be fed by hand. She babbled in words that were difficult to understand.

After Jenny reached her teens, she was even more difficult to control. She would walk around without a blouse, or with a blouse and no pants. She would wander away from home and strike up conversations with strangers on the street.

Jenny was placed in special schools and saw psychiatrists, but her parents finally despaired of caring for her at home.

“It drained everybody,” said her father, a retired engineer.

“I couldn’t handle it any longer,” said Rhonda Campbell, a nurse practitioner.

With strong misgivings about state hospital care, the couple turned to Camarillo for help.

Jenny was admitted to Camarillo State Hospital’s developmental center--as the facility for retarded patients is called--on March 3, 1975, when she was 16.

Rhonda Campbell found that the developmental center at Camarillo was, at the time, Spartan in appearance but by no means merely a warehouse for the retarded.

“I felt enormous confidence in these people,” she said.

Jenny was placed on medication to help control her psychotic behavior. She was toilet-trained, taught to eat with silverware and enrolled in workshops.

“She grew in every dimension,” said Rhonda Campbell. “She became more confident. . . . She could write better, speak better, her vocabulary grew. . . . (She had) friendships.”

Although Andrew and Rhonda Campbell were pleased with Jenny’s progress, it is state policy to find homes in the community for all developmentally disabled state hospital patients who might benefit from such living arrangements. The state pays private operators for providing such care.

In May, 1977, the Campbells reluctantly agreed to have Jenny placed in a private facility in Carson.

At first Jenny did extremely well in a special school in the community, the couple said, but soon her behavior began to deteriorate. She began hallucinating and jabbering again. Finally, out of control, she was taken to a psychiatric unit and subsequently, in July, 1980, was readmitted to Camarillo, where a long recovery began.

By Sept. 23, 1982, Jenny had recovered sufficiently to convince an “interdisciplinary team” of professionals in the field of mental retardation at Camarillo that she was again ready for community placement.

Such a team includes a psychologist, a social worker, a unit supervisor and other Camarillo staff members. The team also includes a representative of a regional center--private nonprofit agencies located throughout the state that contract with the state Department of Developmental Services to place retarded clients in community care homes and to provide other services.

Once clients have been deemed suitable for placement, the regional centers have the authority to remove them from state care and place them in community facilities. Regional centers also have the responsibility to monitor the progress of residents in community care homes.

Parents Unaware of Rights

The Campbells did not agree with the finding by the interdisciplinary team that Jenny was ready for community placement, but they were not aware of their right to a hearing to protest the matter. It is the policy of the state Department of Developmental Services not to remove retarded clients from state hospitals over the objections of their parents.

“Frankly,” said Rhonda Campbell, “we’ve never known our rights or Jennifer’s rights. We’ve just been very negligent in that area.”

Jenny wasn’t sent out of the hospital right away and, as the months and then the years passed, the Campbells began feeling confident that Jenny would remain at Camarillo. They visited her about once a month and took her home for holidays and vacations.

Then in 1985--nearly five years after Jenny was readmitted to Camarillo--officials from the Harbor Regional Center in Torrance called the Campbells to say that the young woman was to be placed at a community care home in Lakewood.

“We were terrified because of our last experience,” said Rhonda Campbell. But the couple didn’t know how to prevent Jenny’s transfer.

Jenny was allowed to stay at Camarillo through June, when she competed in the Special Olympics in Berkeley. Then she was transferred to a six-resident home in Lakewood operated by Edward T. Dawson, who runs a chain of such homes known as Social Vocational Services in Southern California and Developmental Services Assn. in Northern California.

18-Month Probation

The State Department of Social Services put Dawson’s group home operations on an 18-month probationary period this fall, alleging poor care, neglect and abuse of clients in some of his 13 homes. The state accusations did not include the Lakewood home in which Jenny was placed.

At first, the Campbells said, Jenny seemed to do well in the home, but by last Easter when she was home for a visit, they said, she was screaming and jabbering unintelligibly again. They also frequently found large bruises on her legs and arms.

The Campbells said they were told by people at the Lakewood home that Jenny had abused herself, but she had no history of such behavior. They say that when they would call to check on Jenny’s condition, they were frequently told that she was asleep or away from the facility on an outing of some kind. The Campbells didn’t know what to do.

Jenny’s behavior continued to deteriorate and last June, staff members of the Lakewood home transferred her to the psychiatric unit of Long Beach Memorial Hospital.

Rhonda Campbell said that when she saw her stepdaughter shortly after admission to the psychiatric unit, she was somewhat thinner than normal, wearing clothes that were filthy and stained, had a large black eye and was babbling incoherently.

Privacy Considerations

A spokesperson for Dawson said the group home officials would make no comment on Jenny’s care because of privacy considerations.

The Campbells asked that Jenny be readmitted to Camarillo State Hospital last June, but they were told there was no room. They took their daughter home for a month pending her placement by the Harbor Regional Center in a home on Heath Lane in Long Beach operated by a private agency called Straight Talk.

When Jenny Campbell was placed in the Straight Talk home last July 18, the state agreed to pay $2,764 a month for her care and subsequently $1,000 more a month for “one-to-one” therapy by a staff member.

The Campbells say that Jenny’s behavior was still poor when she entered the home but that she was back to near her normal weight of about 130 pounds and was wearing Size 12 clothes.

Less than two months after Jenny was admitted to Straight Talk, Andrew Campbell saw his daughter at a Sept. 8 meeting to discuss her progress and was alarmed at her condition.

“Her weight was really down,” he said.

“Jenny was shouting the whole time and repeating herself. We could hardly hear ourselves think.”

‘Some Slight Progress’

A Harbor Regional Center report on Jenny’s progress dated Sept. 8 says the young woman had made “some slight progress” in connection with her repetitive shouting and jabbering, but the report also seems to indicate that Jenny had lost a considerable amount of weight:

“Jennifer weighs 102 pounds and was found to be in good health at the time of her physical on July 20. . . . Her former weight was in the area of 138 pounds. (112-120 pounds ideal weight). Jenny’s perseverations (constant repetition of words and phrases) interfere with eating and staff encourage her to eat. . . .

“Father is concerned about Jennifer’s weight loss and general mental condition,” the report continues. “He feels (Camarillo State Hospital) Developmental Center would be more appropriate than community placement.”

On Sept. 10, the Campbells called the Harbor Regional Center to voice their concerns and sent a mailgram to Frances Provost, the program coordinator from the Harbor Regional Center who wrote the Sept. 8 report, requesting “immediate medical intervention for Jennifer Campbell.”

The Campbells, who admit that they do not feel blameless, subsequently went on vacation. They say they never received a response to the mailgram.

Emaciated Condition

Officials of the Harbor Regional Center did not return phone calls from The Times regarding Jennifer’s case.

On Nov. 6, the Campbells visited Jenny at the Straight Talk home and this time were horrified at her emaciated condition.

The Campbells called Provost the next morning and reiterated their concerns. Three days later, on Nov. 10, Jenny was transferred to a private psychiatric unit and on Nov. 22 she was readmitted to Camarillo, where staff members said she weighed in at 95 pounds and was screaming incoherently.

Colleen Potusak, music therapist at Camarillo’s facility for the retarded, who had worked with Jenny before she was transferred to community care in 1985, was shocked at the young woman’s condition when she was readmitted.

“The difference,” said Potusak, “is Jenny is not Jenny. She is so sick. She is a total medical problem right now.”

Straight Talk director Ronald Leaf declined to comment on some specifics of Jenny’s case, citing patient confidentiality, but he contended that his organization is not responsible for the young woman’s loss of weight or her deterioration in behavior.

‘No Radical Change’

“My impression is that she came in (to Straight Talk) rather thin. . . ,” said Leaf. “There was no radical change in weight.”

He pointed out that Jenny had been in another community care facility before being transferred to Straight Talk and maintained that in his organization, Jenny was regularly seen by a medical doctor and that “her weight was basically pretty stable.”

He also argued that the young woman, whose height has been variously reported at about 5 feet, 1 inch, to 5 feet, 4 inches, was probably overweight at 130 pounds.

Bridget Soper, who was supervisor of Straight Talk’s Heath Lane house, said Jenny was “petite” when admitted to the home.

“She was very small to begin with,” said Soper, “and then she dropped some weight, (but) not enough that (it) would be considered abnormal.”

Soper acknowledged, however, that Jenny “didn’t eat a whole lot” and that she and Jenny’s parents became concerned about the young woman’s loss of weight.

“I don’t like to see any client losing weight that drastically,” she said. “And I was afraid she might get malnourished. . . . She had lost a lot of weight.”

Leaf also maintained that Jenny’s behavior improved while in the care of Straight Talk.

‘Behaviorally Disturbed’

“She came in very behaviorally disturbed, and she walked out less behaviorally disturbed,” he said. “She wasn’t yelling as loudly.”

But Soper said of Jenny’s behavior:

“Overall, I wouldn’t say there was a big improvement.”

Why was she transferred out of Straight Talk?

“Although she had made improvements,” said Leaf, “it wasn’t enough to stay in the program. And because we are so effective with our clients, I look at those clients as very important . . . and she was taking one of those spots.”

The state Deparment of Developmental Services, which has the ultimate responsibility for retarded clients in community care and state hospitals, reviewed Jenny’s case and found no agency at fault.

“Our findings indicate that the regional center has complied with the law and departmental policy and has done more than required in this case,” said a department spokesperson.

‘Not Found Negligence’

“And we have not found negligence on the the part of the regional center or the care providers.”

Officials of the department refused to discuss specifics of the case, citing client confidentiality. In the meantime, John Chase, a member of the advisory board of Camarillo Developmental Center, where his daughter is a patient, is calling for an independent investigation into Jenny’s case.