The Great Divide

Should the developmentally disabled be cared for in state institutions or in their communities, either at home or in residential facilities? And if they stay at home, who is available to care for them? The issue, which is partly philosophical, partly economic, has been simmering for more than three decades.

It has reached a boiling point in the wake of the case of Pennsylvanians Richard and Dawn Kelso, who, left without nursing help and desperate for respite from caring for their severely disabled son, dropped him at a hospital emergency room--and now await trial on charges of child abandonment.

In California, the faction of parents supporting community care for the disabled said the Kelso case is the canary in the coal mine. Thousands of families are in desperate need of help, they say, because of a critical shortage in nursing care and because the large institutions receive the lion’s share of state funds, even though they care for a minority of California’s disabled.

Gov. Gray Davis’ projected budget for the coming year would allocate $2.4 billion in state and federal monies to the Department of Developmental Services. Of that, $612.7 million would fund the state’s five developmental centers--and $1.7 billion would go to services for those living outside of the institutions.

Community-care advocates point out that the institutions house about 3,800 people, while an estimated 162,800 people with disabilities are cared for in their communities through services provided by 21 DDS-funded regional centers.

Average annual DDS allotment per client to the regional centers: $10,838. Average annual cost per resident in a developmental center: $160,479.

That’s an “apples and oranges comparison,” says John Chase, 76, of West Hills, whose brain-damaged adult daughter has been institutionalized since she was 12. Chase said the care at developmental centers costs more because it includes medical, educational, clinical and residential needs--far more than regional centers provide.

Robert Baldo, executive director of the Assn. of Regional Center Agencies, agreed, saying there is a wide range of costs for clients of community care, depending on need, from almost nothing to $200,000 a year.

But that, he says, does not change the fact that direct-care providers in the community are miserably underpaid and hard to find.

Because of reduced Medicaid reimbursements and a labor-pool shortage that has tightened further in the current strong economy, he said, “The home-health agencies that supply the nurses . . . can’t hire and keep nurses.”

For Bruce MacKenzie of Santa Barbara, who with wife Louise cares for their disabled 18-year-old daughter at home, “the day-to-day uncertainty of whether a nurse will be available and how they will be paid for has made havoc of our lives. A system that makes deserving recipients claw, bite, beg and grovel to get the services and supports they need is not a very good system.”

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Of the disabled outside institutions, about 120,000 live with their families, the others in licensed community facilities, which are much smaller and more homelike than the institutions. Despite the numbers, MacKenzie charges, “the decision-makers continue to give lip service to the idea of in-home support and the idea of a community-based system.”

Pay for community-caregivers is so low, said Michal C. Clark, chief executive of the Kern Regional Center, “people won’t take these jobs. It’s a system in crisis.”

The state does not mandate a level of training for direct-care providers, and registered nurses and licensed vocational nurses are too expensive, said John McCue, chief executive of Santa Rosa-based Independent Living, a multi-service agency. Finding competent staff is difficult, he said.

“Nobody’s going to say, ‘Gee, I’m going to go to school so I can be a community-service provider for eight bucks an hour.’ ”

By contrast, the projected 2000-01 payroll, with benefits, for the 8,000 mostly unionized and highly trained employees of the five developmental centers is almost $423 million.

“California is No. 1 in the disparity between what our state workers get and what people get in the community,” said Ronald Cohen, executive director of United Cerebral Palsy of Los Angeles and Ventura counties.

Sandy Papazian of Westchester, whose 22-year-old disabled son, Joey, lives at home with 24-hour care, said, “We got so desperate we hired the maintenance man at our office” as a caretaker.

“Staff turnover has reached crisis proportions,” McCue said. “Staffing standards have been loosened in order to fill positions. . . . Service [agencies] are unwilling to continue fiddling with system reform while the community service system burns.”

He and others decry Davis’ October veto of a bill that would have increased by 5% funding for community care, including respite care, which is now assessed by the regional centers on a case-by-case basis. Davis said he felt the increase was premature, citing a new rate-setting system at the regional centers that is still being devised.

The state’s institutional population has shrunk from about 12,500 since 1969, the year the state Lanterman Developmental Disabilities Services Act recognized the shift in philosophy away from institutionalization and toward community-based care by establishing the regional centers.

The centers offer services, including at-home nurses, independent-living classes for adults, assisted work programs and sibling support groups. Unable to meet current demand, some regional centers have gone to a voucher system, telling clients with children at home to find the help they need and the state will reimburse them.

Locally, United Cerebral Palsy, recognizing the need of family caregivers for a break, created a “respitality” program. Cohen says, “We go into the home at 4 o’clock on a Friday afternoon and say, ‘Mom and Dad, here are the keys to the Sheraton or the Hilton or the Radisson. You have a weekend on us. We’ll take care of your child.’ ” UCP pays for caregivers, and hotels donate the rooms for parents.

Cohen said there is not enough state money to meet the need. Many parents are 24-hour, seven-day-a-week caregivers.

“You can’t find nurses. And with these kids, you can’t just call the 16-year-old down the street to baby-sit,” he said.

The people with disabilities bear the brunt of the crisis, said Ann Laferty Snowhook of Pacific Palisades, past president of the Autism Society of Los Angeles and mother of Eileen, who suffers from autism, cerebral palsy and epilepsy, and has lived at home most of her 46 years.

“Eileen must cope with six new people every year,” Snowhook said. “It’s very, very difficult for people with autism to get used to new people or new places.”

She and other parents speak of the potential for tragedy when caregivers are underpaid and/or undertrained. It angers her that the institutions get such a big piece of the pie.

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Families with loved ones in institutions say turning the battle for funds into a zero-sum game is overly simplistic and that closing institutions would be cruel to the residents, many of whom have spent their lives there.

Barbara Turner, 79, who lives in the Bay Area and is president of the California Assn. of State Hospital Parent Councils for the Retarded, has a 57-year-old daughter, Linda, who’s lived in an institution for 40 years. Turner is adamant that they should not be shut down: “One size does not fit all.

“The emphasis on deinstitutionalization has spread like wildfire around the country, tragically in many instances. Some people, such as my daughter, benefit from the care they receive in a congregate-care facility where the services they need are available. She would, frankly, die, if you moved her.”

Bob Cross, 68, a retired Los Gatos attorney whose daughter, Colleen, 40, has lived at a center for more than 35 years, said, “It’s tragic that there’s this kind of fight at the food trough. We applaud the fact that Californians still have some opportunity for choice.”

Profoundly retarded, medically fragile individuals such as Colleen, he said, require the level of professional care and services offered at well-run developmental centers, which “cause the community efforts to pale in most instances.”

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At the other end of the philosophical spectrum is Terry Boisot, 44, of Goleta, mother of 10-year-old Ben, who is deaf, blind and severely physically and mentally disabled. She cares for him at home and, with the help of an aide who knows palm-signing, he’s a mainstreamed fifth-grader.

Boisot, who acknowledges being a bit “radical,” thinks the disabled should be fully integrated into their communities.

“When you’re in a segregated classroom, put on a bus, shipped off miles away from home, you can’t expect the community to know you and value you because they haven’t seen you,” she said.

“My son would die. He loves school, and they adore him. He adds something to the classroom that makes being different acceptable. . . . He’s absolutely an example of what diversity really means.”

Terri Menter, 59, of Long Beach, mother of Eric, 28, who has Down syndrome and lives at home, believes there is a middle ground. She deplores the idea that “if you want your kid in an institution, that’s a crime. The anti-institution pendulum is swinging from [keeping them in] the closet to ‘there’s nothing wrong with them at all.’ Now you can’t get anybody in a hospital [even] if they’re dancing on your roof naked and lighting firecrackers.”

Community-care advocates contend that the vast majority of those in the institutions could thrive outside, but that their parents, many of whom are getting older, choose to keep them there--and their lobbyist is a persuasive voice in Sacramento.

“The politicians simply cannot overcome the political forces that keep those institutions running,” MacKenzie said. To raise an opposing voice, the MacKenzies founded the Community Advocacy Services Assn. But, he said, “we have nobody full time in Sacramento. There are brown-bag parents who go up there, but we’re sort of one-man bands. Our average parents shrug their shoulders and say, ‘Whatever they’re willing to give me. . . .’ ”

While acknowledging that “there are people that have issues that we cannot deal with in the community,” said Baldo, of the Assn. of Regional Center Agencies, “our philosophy is basically that people need to be in the least restrictive environment. By and large, we agree that small is better.”

Douglas Van Meter, deputy director, developmental centers division of DDS, said, “With the proper supports, most of the people we have in the developmental centers would do well in a community setting.” He excepts those who might be a danger to themselves or others, a small number, and those who are there by court order after scrapes with the law.

Nevertheless, he said, “the people we provide the services to need the level of services they’re getting,” a concentration of resources and expertise not available in a community setting. “Whether that’s the best environment is another issue. The downside is that we’re in older buildings that don’t allow for the kind of individual living arrangements we would like.”

Beyond that, said Dale Sarbello, manager of DDS’ regional-center branch, “the existing community-based system does not have the capacity to serve adequately all the people now placed in the developmental centers.”

Van Meter estimates the cost of bringing the institutions up to code at between $600 million and $1.5 billion. But he refutes the idea that they are under-utilized. “All the space we have is just about totally used up,” with former residential units converted to treatment units to meet current federal standards.

The state budget for 2000-01 proposes formation of a task force to study whether the institutions should be in different types of buildings or in different locations.

“We know that people do well in smaller settings, and they do very well when they’re close to their families,” Van Meter said.

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Menter, a past president of the advocacy group the Arc of California--which has split over the issue of deinstitutionalization--said the concept of rights for the disabled has segued from partial mainstreaming to full inclusion to attacks on families who choose institutionalization.

Now, she said, there’s the push for “self-determination, that every person, no matter how severely disabled, is capable of self-determination. Personally, I don’t believe that. Eric is not capable of self-determination. Eric is not going to go out and start a computer business.” Yes, the community may accept him, “but they’re not going to take him home and say, ‘I want you to meet my sister.’ ”

Bruce MacKenzie, who calls the institutions “that albatross around our neck,” said that the prevailing notion is that, if disabled children are at home, families need relatively little in the way of assistance. The Kelso case, he said, illustrates the need “to stop pushing families to the wall and to begin fashioning better ways to reach these people before they collapse.” Too often, he said, these parents are dismissed as the “misguided enemies of their own children” for choosing home care.

While Barbara Turner may have basic differences with parents who choose community care, she lamented “this division among parents because, in fact, we’re all in this together. Destroying the care for my daughter isn’t going to help anyone else. It’s a struggle, [and] it seems to me we should be united, not fighting one another.”

Menter agreed, saying, “We’d be shooting ourselves in the foot if we didn’t keep fighting for individual and family preference. Otherwise, the system is going to collapse. The government would like nothing better than to get out of this business.”

Beverly Beyette can be reached at beverly.beyette@latimes.com.