Residents' Rights Recognized in WA

Three cheers for rights: Laws aiding nursing-home residents recognized

By Marsha King
Seattle Times staff reporter

Activist Jill Hacker secretly worried that her nursing home "could remove me at any time for any reason," perhaps when her long-term-care insurance ended or her needs became too difficult to meet.

"I was really scared," says the 59-year-old who has chronic progressive multiple sclerosis and can't walk or get in and out of bed without help.

But Hacker, a champion of long-term-care residents' rights, was relieved recently to learn that she cannot be capriciously transferred or discharged.

If her money runs out, her nursing-home bills can be paid by Medicaid.

Still, her worry was telling.

Despite longstanding laws, even the most educated of the state's some 40,000 long-term-care residents harbor fears about their rights.

That's why Resident's Rights Week is celebrated by citizen advocacy groups and long-term-care ombudsmen this first full week in October every year.

"Residents' rights are not being consistently met in facilities across the country, and a lot of people don't know what their rights are," said Hilke Faber, advocacy coordinator with the Resident Councils of Washington.

"Once you're in a wheelchair, people start making decisions for you."

Out of all consumer complaints to long-term-care ombudsmen nationwide, 31 percent concern resident rights, Faber says.

This state's celebration has been organized by the state Long-term Care Ombudsman program and the nonprofit Resident Councils, which champions long-term-care residents' interests, with a special proclamation from the governor. Facilities that participate will have parties, skits and games such as resident-rights Bingo throughout the week.

The celebration comes at a time when the political clout of residents in Washington state's long-term-care system seems to grow stronger every year.

The nonprofit Resident Councils is the only organization of its kind that's statewide, claiming nearly 300 member councils in long-term-care facilities.

The organization lobbies policy-makers for adequate, well-paid and trained staff; holds training conferences; and publishes a handbook that's in use nationwide on how to start a council. A new publication is in the works that will teach residents how to advocate for themselves.

"The goal is to train residents to be like watchdogs in their own facility, so they aren't fearful to call or write or speak up. So lives will change," says Sharon McIntyre, director of the Resident Councils.

A rally to inform

To help kick off this week, Hacker was the mistress of ceremonies from her power wheelchair at a pep rally where she lives at Richmond Beach Rehabilitation and Specialty Care.

The event started with a cheer from a spunky squad of five residents waving pompoms from their wheelchairs.

"Give me an R. Give me an I. Give me a G. ... What does that spell?"

Hacker reminded the audience — of mostly elderly women and a few men — that their rights are spelled out in the 1987 federal Nursing Home Reform Act, which promises a good quality of life for every resident. This state had passed similar nursing-home laws much earlier. In the mid-1990s, the state also legislated rights for people who live in boarding homes and adult family homes.

The Nursing Home Reform Act addresses every aspect of a long-term-care resident's life from preservation of personal money, to freedom of choice and the right to privacy. It deals with the use of restraints, abuse and overall quality of life.

Top five rights chosen

"This is the first year that the state resident councils decided they'd make an event of these rights," says Hacker, who sits on the council's board. "This year we decided, OK, let's publicize it and celebrate the idea we do have rights and are able to speak up for ourselves."

The state board also chose the top five rights out of the many specified in the law. At Richmond Beach's rally, those rights appeared on brightly colored hand-lettered banners.

Designated most important is the right to communicate without fear of retaliation. Next is the right to use personal belongings and then the right not to be transferred or discharged. Finally, there is the right to safe and adequate care and the right to be treated with dignity and respect.

The aim is to have the spirit of this week carry over to the rest of the year.

"The tricky part is how to actualize the laws," says Louise Ryan, assistant state long-term-care ombudsman. "That's the hard part. Living it out is the challenge."

One of the pep-rally cheerleaders, Evangeline Dubé, wore a smile and an optimistic red hat. Though she has multiple disabilities, she's hardly giving up.

"I'm an old registered nurse, and I have seen things improve," Dubé said. But there's always room for things to get better.

She's planning to meet soon with the nursing-home administrator "to present my ideas. ... I didn't come here to just take a rest. I really want to contribute."

Marsha King: 206-464-2232 or mking@seattletimes.com