How California Copes in Caring for the Brain Damaged : State Centers Aid in Keeping Those Who Don’t Need Constant Care in the Home

Mrs. Bashkiroff, you must realize society is not prepared for problems such as yours. --Psychiatrist to Anne Bashkiroff after seeing her husband, avictim of Alzheimer’s disease.

It was brutally cruel, but true. For brain-impaired adults, the options have been minimal and harsh.

The problem is that though brain-impaired people may look like everybody else, their behavior makes it impossible for them to hold jobs, live on their own or generally function in society. They need constant supervision, but not always constant care. And that’s the rub. There is no insurance provision for this type of situation. Which means a family caring for a brain-damaged adult must either be rich enough to afford day help or a nursing home--or poor enough to qualify for Medi-Cal, which pays for this type of care.

It’s an insidious problem and one that affects an estimated 13 million adult Americans and their families, according to statistics provided by the Family Survival Project in San Francisco. It’s also a problem where everyone loses--not only the patient, but also the family and the American taxpayer, who combined are spending an estimated $26 billion a year for nursing home and home health care of Alzheimer’s victims alone. (Alzheimer’s is only one of many causes of brain impairment, a condition that may be due to stroke, accident and a variety of diseases.)

The California solution: Known officially as Assembly Bill 2913, it was authored by Assemblyman Art Agnos (D-San Francisco) and 26 Assembly and Senate co-authors. Though it took effect on Sept. 30, 1984, only in the past few months have Californians started seeing real action.

Inspired by the experiences of Anne Bashkiroff, who had nowhere to turn when her husband, Sasha, became a victim of Alzheimer’s disease, and modeled after San Francisco’s Family Survival Project, four Regional Resource Centers have been established to serve brain-impaired adults. Located in San Francisco, Santa Rosa, Los Angeles and San Bernardino, the centers share funding of $1.6 million from the California Department of Mental Health. Plans call for seven more centers by 1988.

The premise behind the centers is simple: Instead of placing brain-damaged people in nursing homes, why not keep them at home, but with the availability (either free or at a nominal cost) of respite (or visiting home) care, residential day programs, legal advice and direct counseling? The price differential to the state is startling: $400 per month for respite care compared to about $2,000 for a nursing home stay, according to figures provided by the Family Survival Project.

It’s a “spend money to save money” philosophy and it’s “revolutionary,” said Agnos, a social worker before his election to the Assembly in 1976. “Not only for California, but for the country. It’s the first time we’ve seen a health-care effort aimed at people no matter what their income is. It really provides the best of both worlds. It’s good for the patients and it’s good for taxpayers.”

“I hope someday people will look at us as they do the 411 number for information, an all-purpose number for information and referral about the brain-impaired,” said Nicole Kaplan, director of the Los Angeles Resource Center for Brain-Impaired Adults.

Since the local center began offering services on Feb. 1, close to 500 people have called (213) 543-4808.

“A lot were for information only or referrals to other agencies,” she said. “But there were some requests to fund part of respite care (which is available on a sliding scale) and to assist with legal consultation. And besides having calls from across the county, we had calls about not just Alzheimer’s, but multiple sclerosis, Parkinson’s, everything.”

The Los Angeles Resource Center is a program of the Harbor Development Disabilities Foundation and shares its offices in Torrance. (The state’s other resource centers are programs of Catholic Charities of the Diocese of Santa Rosa, San Bernardino Community Hospital and the Family Survival Project. In addition to serving six Bay Area counties, the Family Survival Project was the pilot for the statewide program and is consultant and statewide clearinghouse to the other centers.)

It began with an angry Anne Bashkiroff meeting up with the San Francisco Mental Health Assn., which just happened to be going through a period of assessing community needs. From that developed the Family Survival Project, funded by the state Department of Mental Health as a pilot project in 1978, one that proved so successful it spawned a statewide network of Regional Resource Centers beginning in 1984.

But along the way, there had also been a great deal of lobbying and educating. For one thing, said Family Survival Project executive director Diana Petty, most people had no understanding of brain damage. There had been little research and there was no public voice for brain impairments as there has been for, say, cancer or more recently, AIDS.

“It’s an invisible disability,” said Petty, who came to the project in 1978 from a career in communications and public relations. “There was nothing (to help). This was the most difficult population, the one that the health and social services had the most trouble dealing with because brain-impaired people are not nice to be around. What we’ve done is find a way to bring services to the family of that person without supplanting that family.”

If the Family Survival Project worked, said Petty, it’s because the people behind it did a number of additional things right:

“We’ve done a little of everything--from legislation to working with support groups, developing and delivering services. Plus we looked at all the brain impairments, not just one specific disorder.”

Political savvy was another factor in the project’s success, Petty said. “I don’t think it works taking angry people to Sacramento. It clogs the halls. Rather you need groups of articulate professionals who come on to legislators with just the facts. And then they follow up--efficiently and ethically.”

Nor did it hurt, observed Karla Griffin, resource coordinator, that by the time talks began with Agnos about taking the project statewide, the Family Survival Project had a mailing list of 8,000 names.

Bay-Area Mailing List

Now there’s a mailing list of 12,000 in the Bay Area alone. In its consultant role, the Family Survival Project is seeing how problems vary in different parts of the state--a shortage of long-term facilities in the Bay Area, while in Los Angeles it’s the logistics of providing adequate information and referral--and trying to set policies that are both broad and flexible.

Nevertheless, problems facing the brain impaired and their families are no longer as grim as they once were, said Petty. “There are 13 long-term care demonstration projects throughout the state; multicare programs for low-income elderly have been expanded along with multipurpose senior services programs. There are six state-funded Alzheimer’s diagnostic and treatment centers (including two at USC) and eight state-funded respite centers (for Alzheimer’s patients), plus a growing number of privately funded respite facilities and diagnostic centers.”

What’s more, California’s commitment to the Regional Resource Centers is firm, says Agnos. “The Family Survival Project established a good solid track record. So the issue no longer is ‘Is this worthwhile?’ Instead, it’s funding and how much.”