Small Advocacy Organizations Struggle To Overcome Odds

Well-intentioned advocates hoping to es tablish effective consumer groups face daunting obstacles.

Good intentions aren’t enough. It takes a lot of money to build an effective consumer organization. That’s one reason some so-called consumer groups are funded by the very industries they’re supposed to be watching.

Consumer pride is another obstacle. Once an advocacy organization is in place, consumers often don’t want to admit they’ve been cheated, making it almost impossible to help them.

And all agencies must overcome the reputation of being ineffective or fraudulent - a problem caused by an increasing number of fly-by-night agencies. One-person, homebased operations - the typical profile of an industry front group - have to be especially dedicated to serving the consumer in order to overcome this reputation.

But some small advocacy organizations overcome these odds. Despite financial losses and frustrations, they stay afloat because of their unflinching desire to equalize the marketplace - and often because they wish they had had an advocate to turn to when they got ripped off.

One such agency is Foundation for Aiding the Elderly.

FATE is a one-person operation run by Carole Herman out of Sacramento, Calif. When her aunt died 12 years ago due to mistreatment in a nursing home, she founded FATE to help other nursing home residents and their families.

Her non-profit agency investigates abuse claims around the country and provides information on nursing home law and lawsuits. Herman, who funds the operation largely with personal savings, sits on a task force for the Nursing Home Association of California.

“If someone contacts me, I can assure them that I am a legitimate non-profit organization and I am personally motivated to help them because my family itself was a victim,” she said.

The most important key to becoming an effective consumer advocate is the ability to deliver what you promise, Herman said.

If you need quick advice, she will tell you what your rights are or the rights of the family member inside the nursing home. She can also tell you which homes have been parties to lawsuits.

If you need more information, Herman will mail you a copy of the federal government’s “patient’s bill of rights.” If you believe you or a family member has been abused in a nursing home, she will file complaints on your behalf with regulatory boards in Washington state.

Being familiar with government officials, victims and the institution itself is also integral to effective advocacy.

“I know the process and people in the system who are supposed to be protecting us,” Herman said.

“Basically, you have to take responsibility for yourself and your loved ones. The government has given us all a false sense of security that they’re protecting us and they’re not.”

Nursing home abuse has become commonplace because the nation has allowed nursing homes to get away with it, she said.

Nursing home abuse - what she calls the “disgrace of the century” - is widespread because family members who can’t take care of elderly relatives feel guilty. They don’t like to acknowledge their responsibility in choosing the abusive nursing home, Herman said.

“Some people don’t even want to think about dying, and to complain might mean that you have to deal with your own feelings of guilt and immortality,” she said.

Herman does not charge customers a fee. Although most of her funding is from her savings and family, she gets some money from non-government/non-industry grants. She also receives small donations from victims’ families.

“I’m a pure advocate. No money from any type of organization will impact my work,” she said.

Herman’s not financially bound to corporate dollars, as are some “research” groups funded by corporations.

Because she’s not dependent on businesses or the government, “the system doesn’t know how to handle me and neither does the industry,” Herman said.

“No one can threaten me. I’m not accountable to the bureaucracy. I can speak my peace,” Herman said.