Parents’ Groups Decries Inequities in State Aid for the Mentally Ill and the Retarded

Parents of the mentally ill are charging that the state has shortchanged their sons and daughters by denying them benefits long available to another class of mentally impaired individuals--the retarded.

The lower benefits have forced many mentally ill adults to live under sometimes brutalizing conditions in run-down apartments and rooming houses or in board-and-care homes that offer little supervision or meaningful activity, according to advocates for the mentally ill.

The retarded “have all kinds of things we only dream of,” said Tony Hoffman, a volunteer lobbyist for the California Alliance for the Mentally Ill.

The pleas of parents are having an effect. Legislation to increase payments for the board and care of the mentally ill was introduced earlier this year.

Earlier Estimate

The Deukmejian Administration recently proposed spending $11.3 million more next year for board and care, far less than an earlier estimate that it would take an additional $45 million annually.

Even with the money the Deukmejian Administration is proposing, however, board-and-care benefits for most mentally ill patients would still be lower than they are for the retarded.

Without a major change, the parents say, inequities will continue.

Even at The Manor in Santa Monica, a pleasant board-and-care home where the mentally ill and the retarded live side by side, the sharp difference in the way the state treats the two groups is clearly evident.

At first blush, the place has the look of a singles apartment complex. On a recent afternoon, several mentally ill residents sat around a central pool.

However, most of the 20 retarded men and women were away all day at special job programs. For the retarded residents, evenings are filled with activities designed to teach such simple living skills as tying shoes, grooming, cooking and shopping.

Not Available

Comparable programs are not available for the mentally ill, said Dennis G. Wilder, a Ph.D. psychologist who directs the privately owned board-and-care facility. All too often the mentally ill “don’t have anything to do all day,” he said.

Moreover, the state sets the rate that Wilder can charge at $503 a month for each of 125 mentally ill residents. Payments for the retarded, however, vary with the needs of the individual, up to $945 a month.

Wilder said he and his partner are losing money on their mentally ill residents and are forced to consider shifting over to an increased number of retarded.

In fact, since 1977, when the state began providing added money for the board and care of retarded adults, more and more mentally ill individuals have been forced out of board-and-care homes and into the uncertain world outside state-licensed facilities, according to state officials.

Ironically, under the current system, mentally ill men and women can consider themselves lucky if they are retarded as well.

Privately Owned

At a privately owned group home in Inglewood called Only a Place to Start, all of the residents have a double diagnosis--they are both retarded and suffer from chronic schizophrenia, a mental illness.

Because these patients are retarded, they are eligible for funds and programs that they would not receive if they were schizophrenic alone.

All these doubly afflicted men and women are enrolled in programs that take them away from the facility, a former nursing home, for much of the day. The board-and-care home also is paid to run programs of its own designed to change troublesome behavior patterns and to teach basic living skills.

The state is spending more than $2,200 a month for each resident--significantly more than the $503 monthly payment for those who are only mentally ill--according to Marshall Pura, program director at the home.

Watch TV

“If they were just schizophrenic and in a large board-and-care home, they’d just sit around watching TV,” Pura said.

Because of the payment levels, few board-and-care operators are willing to take in the most severely disturbed of the mentally ill--patients who cannot be hospitalized but who require a great deal of supervision.

For example, the small, homelike board-and-care facility run by Leon Springer and his wife in Gardena screens out the most troublesome mental patients. The Springers have no problem keeping their 12-patient facility full, and they usually have a waiting list.

Late one morning recently, several of the residents were still in bed. “They tire easily,” Springer said, and they seem to spend a good deal of time sleeping or sitting and smoking.

A psychiatrist comes twice a month, the maximum number of visits paid for by Medi-Cal, the state and federal health care program for the poor. Except for an occasional outing, there are few organized activities.

Yet the Springers’ patients are among the luckiest: They have decent housing.

Living conditions behind the iron fence and crumbling facade of Merit Manor in Central Los Angeles illustrate in the starkest terms the failure of the state to provide incentives to care for the sickest patients.

On a recent, unannounced visit to this state-licensed board-and-care home, a score of mentally ill men and women sat listlessly against the wall of a dingy entry room or in the narrow inner-courtyard beyond. Many of the patients were filthy, unwashed and dressed in grimy clothing. The reception area reeked of urine.

A woman resident gyrated wildly to music on a second-floor balcony, apparently trying to get the attention of the male patients below.

Only a week before, state licensing officials cited the 83-bed facility for a host of violations, including a failure to report that a woman patient said she was raped by a midnight visitor, the assault of three residents by another and a fire set by a woman patient in her room.

Spoiled Produce

The inspectors also reported finding rodent droppings and spoiled produce swarming with flies in the kitchen. Not one bed, the inspectors said, had clean linen. A number of the mattresses needed to be replaced, and one was so filthy and roach infested that the state team ordered it destroyed on the spot. Few of the heaters were working.

The state evaluators observed that lunch on the April inspection day “consisted of about one-half cup of prepared macaroni and cheese, two to three tablespoons of green salad (lettuce) mixed with mayonnaise and a cup of punch. No seconds served.”

“A rat dropping could happen anywhere,” said Jeanne Salamon, who with her husband, James, owns and operates Merit Manor.

The Salamons vigorously defend their facility as one of a few ready to take in seriously disturbed and sometimes violent individuals. It would be easier to become a hotel, dropping the state license as a board-and-care home and avoiding state inspections entirely, they said.

Correcting Problems

Instead, they said, they are correcting every problem identified by inspectors--replacing mattresses, buying new linen, repairing heaters and increasing supervision.

“Their families don’t want them,” Jeanne Salamon said. “Really, we are their family.” For many, she added, the alternative is living in a park.

Many of the mentally ill do survive as best they can in parks or on the streets. State mental health officials estimate that half of the 75,000 homeless in the state are mentally ill.

Others live in unlicensed facilities, like the downtown Sacramento apartment house where four mentally ill patients use their disability checks to pay $400 a month to sleep on metal bunk beds in the living room of a converted apartment.

For their money, the residents get a roof over their heads, linens and towels and food, which they must cook for themselves. They get no supervision, other than what is provided voluntarily by a caretaker, a mental patient himself.

Lobbying Effort

Parents of the mentally ill are mounting a lobbying effort to improve benefits for the board and care of their sons and daughters.

They are following the example of the parents of the retarded, who over the past decade have won a host of benefits for the developmentally disabled--a group that includes the retarded, those with cerebral palsy and others with lifelong mental impairments.

“When the parents of the developmentally disabled come to town, you can hear the tanks roll up,” said one legislative aide, who attributes many of the differences between the two systems to the parent-run Assn. for Retarded Citizens and its well-oiled lobbying effort.

“The political clout of the developmentally disabled community” is largely responsible for the differences, agreed Gary Macomber, who heads the agency that provides programs for 75,000 retarded and mentally ill individuals.

Protest Staged

In 1975, five members of the parent group staged a 57-hour sit-in in the office of then-Gov. Edmund G. Brown Jr. in a protest against conditions for the retarded at state mental hospitals. Brown finally agreed to meet with the demonstrators and, after a tour of the hospitals, promised to upgrade conditions.

Today, facilities for the mentally retarded in state hospitals fully meet national standards. The state hospital wards for the mentally ill do not, although Gov. George Deukmejian says he is committed to upgrading the hospitals in order to meet those standards by 1987.

The parent lobbying group for the retarded remains an active political force, alerting its 47 chapters whenever a major issue is before the Legislature and urging members to contact legislators directly, both in the Capitol and in legislative districts.

It is “grass-roots lobbying”--without campaign contributions, lavish legislative dinners or political endorsements--said the parent group’s executive director, Theodore E. Johnson.

And it works.

In 1984, when state rehabilitation programs were on the verge of running out of money, the group convinced the Legislature to find an additional $5.1 million to keep training programs for the retarded going until the end of the year.

Lawmakers Cited

The parent lobby publicly recognized the legislators who carried their bills. Sen. Gary Hart (D-Santa Barbara) and Assemblyman Bill Leonard (R-Redlands) were honored with plaques presented at the parent group’s annual meeting.

So superior are the benefits for the mentally retarded that parents of children with autism--a lifelong mental disorder in which the individual fails to develop socially and may be totally withdrawn--have fought successfully to have government agencies consider the disorder in the same category with retardation and not a mental illness.

“We avoided the mental health system like a cobra,” said Toby Arenberg, director of the Los Angeles chapter of the National Society for Children and Adults with Autism.

The autism group, in a lobbying campaign of its own, convinced Congress to classify autism as a developmental disability, like retardation, in federal education and public health laws. Most states, including California, use the federal classification when designing state programs.

Promising Results

Consciously following the example of the parents of the retarded, the parent lobby for the mentally ill opened its own Sacramento office just four years ago. Today, eight volunteers and a two-member staff follow bills, knock on doors in the Capitol and organize letter-writing campaigns.

The results are promising.

“They’ve become sophisticated,” said the state’s mental health director, Dr. D. Michael O’Connor. “They’ve figured out that you’ve got to have a lobbyist up here walking the halls. They’ve figured out that you’ve got to knock the director of mental health on the head; you’ve got to send letters to the governor. And it’s really made a difference.”

The parents already claim several triumphs, including passage of a bill that permits hospitals to release mental health records to patients’ relatives--an exception to state privacy laws.

Friction has developed between the parent lobby and a growing organization of mental patients and ex-patients known as the California Network of Mental Health Clients.

There are several points of contention.

One is the $43,000 in federal funds the state has granted to the patients’ group.

‘Block Access’

“The patient movement is dominated by an anti-psychiatry philosophy,” said Edward R. (Ted) Hutchinson, one of those active in the parent group. “They try to block access to treatment. Many are against involuntary treatment.”

Hutchinson said it is unfair for the state to subsidize the patient group just as the parents are beginning to have an impact.

The parent lobbyists are also at odds with the patient lobbyists on the most basic issue of all: how to care for the mentally ill.

Many in the patient movement think board-and-care facilities are not the answer.

“The problems are not solved by pouring more money into the system,” said Ron Schraiber, an active member of the statewide patient group. “It’s like pouring gasoline into the fire.”

Schraiber, who said he has been jailed 15 times and hospitalized 20, said he prefers jail to hospitals.

On mental illness, he said, “I don’t believe in the concept.”

Radical Wing

“We feel the treatments are harmful, unbelievably harmful, permanently harmful,” said Jenny Miller, an editor of Madness Network News, a 12-year-old Berkeley publication that is a forum for the more radical wing of the patient movement.

Miller and others complain that the parent group is “working to make it easier to lock people up.

We don’t believe in the whole psychiatric system,” she said.

Others in the patient movement acknowledge that they have been helped by the system, despite what they regard as its serious flaws.

“I’m glad my wife called the cops; I’m glad the cops came and put me in the hospital,” said Lou Williamson, another patient activist.

“Lots of folks taking medication are leading fairly normal lives,” he said. “What they need is social and vocational help, and that’s not being provided.”

Some parents of the mentally ill worry that this new cacophony of voices will hurt their efforts to improve the mental health system for their children.

Care Payments

The parents are backing a bill by Sen. Nicholas C. Petris (D-Oakland), which would increase board and care payments for the mentally ill. The biggest increases would go for facilities that take in the most severely ill patients.

The payment system would be similar to what the retarded already have, a costly idea. A state study estimated that the Petris proposal would have cost $45 million if it had been in effect in 1982.

Petris said that the high cost has been the biggest obstacle to getting his measure out of the state Senate, where it has been stalled.

On the Assembly side, however, the language of Petris’ bill has been added to a major mental health reform measure, authored by Assemblyman Bruce Bronzan (D-Fresno).

Last week, the Bronzan bill was unanimously approved in the Assembly subcommittee on mental health and developmental disabilities.

Seek Common Ground

Out of necessity, the patient and parent lobbying groups are trying to find some common ground.

“We are meeting with the ex-patients,” parent lobbyist Hoffman said. “We are finding out where we agree. We, of course, will never be in the same organization.”

“We are trying to work cooperatively with (the parents),” said Jay Mahler, an ex-patient who works as a patients’ rights advocate. “We want to work together for the next couple of years on things we agree on and hold a moratorium on things where we are opposed.”

DIFFERENCES IN THE PROGRAMS

The differences between the systems for the mentally ill and the mentally retarded are striking:

MENTALLY ILL BOARD AND CARE HOME BENEFITS: Operators of homes serving mentally ill receive a flat $503 a month for each resident to cover food, lodging and a minimum of supervision. Most of those who care for the retarded receive much more, up to $953 a month, depending on the needs of the resident. Additional payments averaging $700 a month for each eligible resident are made to homes providing special instruction in living skills. SUPPORT SERVICES: There is no statewide system of care for the mentally ill; programs vary widely from one county to the next. STATE FINANCING OF COMMUNITY PROGRAMS: Money earmarked for programs serving the mentally ill has declined by 11% in inflation-adjusted dollars since 1980. PERCENTAGE OF PATIENTS IN LICENSED FACILITIES: Only about 6% of the estimated 170,000 chronically mentally ill adults in California are in state-licensed homes. HOUSING GUARANTEES: California law does not guarantee mentally ill patients housing, treatment or other services.

MENTALLY RETARDED BOARD AND CARE HOME BENEFITS: Most of those who care for the retarded receive much more, up to $953 a month, depending on the needs of the resident. Additional payments averaging $700 a month for each eligible resident are made to homes providing special instruction in living skills. SUPPORT SERVICES: A statewide system of 21 private, nonprofit regional centers places developmentally disabled individuals in appropriate housing. Centers also arrange job training, social activities and transportation and regularly check on clients’ progress. STATE FINANCING OF COMMUNITY PROGRAMS: In same period, financing for local programs for the retarded has increased by 54% after adjustment for inflation. PERCENTAGE OF PATIENTS IN LICENSED FACILITIES: 33% of the state’s 43,000 developmentally disabled adults are in licensed facilities. HOUSING GUARANTEES: All those rights are spelled out for the retarded.