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Blackouts Mean More Than Inconvenience for Disabled

Energy: They say life-saving equipment could fail. Advocates will urge state officials and utilities to provide a stronger safety net.

By JOHN M. GLIONNA, Times Staff Writer

SAN FRANCISCO--As she monitored the news of possibly more rolling blackouts Monday, Lori Gray braced for another tense day in the projected summer-long fallout from the state's worsening energy crisis.

For the 39-year-old Berkeley woman--who is blind and suffers from epilepsy, asthma and chronic pain from aching joints that restrict movement--losing electricity is more than just an inconvenience. It could kill her, she says.

Gray relies on electricity to run several life-saving machines that do everything from dispensing her asthma medication and opening her door by remote control to relaying her emergency telephone numbers in a computerized voice.

Today, disability activists are calling on state officials and California's utilities to do more to assist residents like Gray --disabled people who are perilously vulnerable to any loss of electrical power.

In letters to Gov. Gray Davis, the California Public Utilities Commission and Judge Dennis Montali, who is presiding over Pacific Gas & Electric's recent bankruptcy filing, an Oakland-based disability watchdog is calling for a comprehensive statewide system to ensure that disabled people do not fall through the energy crisis safety net. Lawyers from Disability Rights Advocates want a state-mandated emergency plan that responds to the "disproportionate and life-threatening impact of the energy crisis on people with disabilities."

Activists are calling for a statewide early-warning system; the creation of charging stations on exempt circuits for recharging equipment during blackouts; funds to buy backup batteries and generators and a toll-free emergency hotline for the disabled. They also seek a state investigation into remedies for the long-term impacts--including rate increases.

Gray says the prospect of losing power and relying on unreliable generators pervades even her dreams. "I spend my days worrying," she says. "I worry over when the next blackout will come. I worry about my friends who are in similar, if not worse, predicaments than me--who rely on their respirators. Let me tell you, this is no way to live."

At least two utilities said Monday they already employ an early-warning system for many customers on life support, but were open to other suggestions on how to improve services for the disabled. They added that the burden also rests with state officials. Activists, who called the letters a first attempt to open discussions of the issues, say they have not ruled out a class-action lawsuit on behalf of what they say are 3 million people with disabilities in California.

"The response should not be an ad hoc process--one utility doing this and another that," said Shawna Parks, an attorney for the Oakland nonprofit. "We want an organized system that addresses some very serious needs. And as for any lawsuit if this doesn't happen, we're not closing any doors."

Disability Rights Advocates recently won major concessions in settling a lawsuit it filed against health care giant Kaiser Permanente for failing to address the needs of its wheelchair patients. PUC Commissioner Carl Wood said Monday he would be open to any suggestions to assist the sick, elderly and disabled in the event of continued blackouts. "The energy crisis has put a huge burden on the most vulnerable people in our society--people just trying to survive," he said.

But funding new programs presents problems. "One utility faces bankruptcy and others could be close, so some might question the wisdom of giving them new mandates when there may be no money to fund them," Wood said. "The goals are reasonable. The question is where the money comes from."

Dan Quigley, director of emergency communications for PG&E, said the company contacts about 22,000 life-support customers before anticipated blackouts. Another 48,000 are part of a medical baseline program in which they receive reduced electrical rates. "We didn't design the system to shut people off and cause them inconvenience," he said. "We're eager to work with the PUC and disabled advocates to figure out a system that reduces the disruption."

Quigley added, however, that some of the activists' suggestions--such as community battery charging stations--would be better served by state emergency response groups. Anita Gore, a spokesperson for the state's massive health and human services agency, said the suggestions will be considered. "This is all relatively new," she said of the blackouts, "so we're gearing up to address concerns of the disabled and everyone else."

Ed Van Herik, a spokesman for San Diego Gas & Electric, said the company notifies 3,500 life-support customers of impending blackouts and "calls those customers back later to make sure the power has come back on." He echoed concerns about the suggestion of an emergency hotline. "Some of those calls might be better handled by 911," he said.

Disability Rights Advocates has recently heard from dozens of disabled residents from across the state, including a woman who uses a respirator to breathe at night--who says she must stay awake during blackouts because she cannot afford a generator.

A deaf man who uses visual alarms for the phone, doorbell, smoke detector and baby monitor has lost them during blackouts and fears going without power at night--saying his family will have difficulty communicating because they use sign language. Another disabled woman who uses a wheelchair told advocates she was stranded in her apartment during a blackout because the elevator did not work and she could not use the stairs.

Parks said activists want the utilities to expand services for the disabled. "There are situations faced by the disabled that aren't defined as critical by the utilities," she said. "There are many more definitions of being disabled than to be on a respirator or life support."

Lori Gray knows how the system can fail the disabled. She was expelled from PG&E's medical baseline program last summer after failing to respond to a company letter requiring her to recertify. "They sent a printed letter, but I'm blind and can't see," she said. "But they bounced me anyway."

Now Gray must acquire new letters from her doctors to get readmitted into the program. And when she asked utility officials to attach a staple to the return address of future letters so she could distinguish them as important mail, they refused--until she complained to PUC officials.

Gray says she would do anything to be included in the early warning programs because notification could be a lifesaver. "It would relieve the stress of worrying when the next blackout is coming," she said. "I think the disabled deserve that much."

Copyright 2001 Los Angeles Times

-- Swissrose (cellier3@mindspring.com), May 08, 2001