‘Care-Givers’ Told There’s No Quick Fix for Disabled : Groups Helping Brain-Impaired Individuals Urged to Work Toward Long-Term Improvements in Services

Nonprofit groups striving for attention and funds to help those with mental retardation, degenerative brain diseases and traumatic head injuries must learn to work together, said William Dussault, a Seattle attorney who gave the keynote address at “Public Issues, Private Sorrows,” a Friday and Saturday conference at the Anaheim Hilton.

Dussault, who began working in 1970 to improve educational options for mentally retarded children and now advises a wide range of nonprofit groups, also told about 200 “care-givers”--relatives of brain-injured people as well as professional health workers--that Americans must stop thinking in terms of “the quick fix” for major social problems.

“One year, on the cover of Time magazine, there’s a huge spread about Alzheimer’s,” he said, “but six months later it’s gone, and we’re on to AIDS, and (then) to crack (a form of cocaine). It’s like we’re conditioned by the Ben Casey, Marcus Welby school of medicine, that you can fix any problem in an hour on a TV show. . . .”

Keeping the focus on long-term problems requires unified action, Dussault said. Improving services for those with brain disabilities also requires diverting the bulk of the “federal funding stream” from such institutions as nursing homes and intermediate care facilities to “providing support for individuals to live at home. . . . The main thing that should be at the core of our agenda is maintaining freedom of choice” for brain-impaired individuals and their families, Dussault said.

Statewide Program

Dussault’s talk launched two days of speeches and workshops on legal, financial, medical, personal and political issues affecting those with brain disabilities. The conference was sponsored by San Francisco’s Family Survival Project (FSP), the Los Angeles Resource Center and the San Bernardino-based Inland County Resource Center (three of the four state-funded agencies--the fourth is in Santa Rosa--that provide informational and support services for the families of brain-impaired adults).

The Los Angeles, San Bernardino and Santa Rosa centers are modeled after the 10-year-old FSP and went into operation at the end of last year. Only California has such a statewide program for the families of brain-damaged adults, according to Assemblyman Art Agnos (D-San Francisco), a Saturday morning speaker. In October, the sites for three more resource centers will be announced, he added, and Orange and San Diego counties are under consideration for two of those sites.

Agnos, who authored the legislation that provided funding for the centers, said he is not presently pushing for more state assistance to the families of brain-damaged individuals, but that the “great unmet need” for such families is for more “respite services” to allow them occasional time away from care-giving responsibilities.

Resource Centers

The resource centers serve as centralized information, advice and referral sources for their areas, and offer mental health services to the families of brain-injured individuals. FSP also serves as a statewide information clearinghouse and can be reached at (415) 921-5400. However, the centers can provide only limited funding for day-care and home health-care services, according to Kathy Kelly, FSP’s education and services program manager.

Yet day-care services can be costly, she added. Out-of-home placement of brain-impaired individuals is even more expensive, averaging $800 to $1,000 a month for a residential care facility; $1,500 to $2,000 a month for a nursing home, and more than $2,000 a month for placement in a locked hospital ward, Kelly said.

While the destitute may receive financial aid, with middle-income families “by and large the cost of care is born privately,” she said.

But Zoran Basich, a Hollywood attorney who serves as an adviser to the Los Angeles Resource Center, told participants in one workshop that it’s possible to become eligible for public assistance by transferring property from an ill person to a healthy relative.

For instance, Basich said, an ailing husband could give his property to his wife, then wait two years and apply for Medi-Cal health insurance. (In most counties, including Orange County, Medi-Cal requires that an individual not have given away property “without receiving like value back” within two years of application for public health assistance, Basich said. However, an individual can transfer a family residence to a spouse at any time without affecting Medi-Cal eligibility.)

Splitting Assets

A couple can also legally split their assets and use the ill partner’s half for medical expenses until he or she is eligible for Medi-Cal, Basich said.

The earlier such action is taken, the better, Basich said, because questions of mental competency can arise as diseases such as Alzheimer’s progress. If, however, an individual becomes incompetent before transferring property to a healthy relative, the primary care-giver should get legal designation as conservator of the property, Basich said.

“There’s no reason why people today need to be pauperized. . . . The well spouse can keep at least half of the estate,” he said.

In another workshop, Robert Enright, an assistant professor of sociology at the University of Wisconsin, said that women are most frequently the primary care-givers for brain-damaged husbands, children and other relatives, and increasing numbers of care-givers also work outside the home.

Enright, who recently completed a survey of those who care for brain-damaged adults, said that many employed care-givers find their job performance impaired by worry about ill relatives. In addition, he said, many care-givers who work part time reported that they would work more hours if they weren’t caring for ill relatives at home. More than one-fifth of those who responded to the survey had quit their jobs in order to care for brain-damaged relatives, Enright said.

Help From Employers

A survey conducted by the Travellers Insurance Co. of Hartford, Conn., produced similar findings, said Barbara Greenberg, a company representative. However, Greenberg said, many companies across the country are starting to provide their care-giving employees with information about available community resources, and some companies are also establishing care-giver support groups and adult day-care center programs.

Care-givers’ biggest need is for adequate information about available community resources, according to Nicole Kaplan, director of the Los Angeles Resource Center. The Torrance-based center also funds some respite services for Los Angeles County residents. Similar services for Inyo, Mono, Riverside and San Bernardino counties are provided through the Inland Counties Resource Center. (To reach the Los Angeles center, call (213) 543-4808; for the Inland Counties center, call (714) 824-2461 or (800) 423-6432.)

No Agency in Orange County

However, no such agency exists in Orange County, although the county has a “very definite need for a central resource center,” said Faye Ashby, a Garden Grove resident who’s the director of adult services for the Orange-based Rehabilitation Institute of Southern California.

“Orange County does have a number of resources (for families of brain-damaged individuals), but one of our biggest problems is making people aware of where they are,” Ashby said.

Resources within the county--which include several adult day-care facilities that accept brain-impaired adults, hospital and community support groups for the families of Alzheimer’s disease victims and the Rehabilitation Institute’s own free counseling service for the families of stroke victims--are presently scattered, “like a jigsaw puzzle” that needs to be put together, Ashby said.