Image: Chuck Barzen and Karen Hammer
Ted S. Warren  /  AP
Chuck Barzen, left, receives help getting dressed from Karen Hammer at their home in Seattle on Jan. 16.
updated 5/14/2004 12:43:59 PM ET 2004-05-14T16:43:59

The red brick ranch house with the white picket fence was a dream home when Karen Hammer and Chuck Barzen bought it together 10 years ago.

But when Barzen suffered a devastating stroke, Hammer shelved her own dreams to take care of him. She gets the 6-foot, 200-pound Barzen out of bed every morning, dresses him, bathes him, changes his adult diapers, cooks his meals, cleans his clothes, and does everything else necessary to keep him healthy and out of a nursing home. For this, the state pays her $8.43 an hour.

She knew caring for him would be tough, but she never thought things would get this bad.

Last fall, responding to budget pressures, the state cut her monthly paycheck from about $900 to about $300. Over the past seven months, Hammer, 62, and Barzen, 69, have slid deeper and deeper into poverty. Their van was repossessed and they’re constantly ducking calls from creditors.

Now they’re selling the house.

“We can’t keep living like this,” Hammer said recently as she took a break from cleaning and packing. “I’m tired of being poor.”

She’s not alone. Recent changes in the way Washington State calculates home-care hours for clients have left many of them in a lurch. Legal challenges are pending for hundreds of elderly and disabled people who say they’re not getting enough hours of taxpayer-funded help.

Home-care clients face difficulty
State officials say they’re simply trying to make determining home-care hours more fair and consistent across the state. But some advocates for the elderly and disabled say the new system is backfiring, and hurting those who need help the most.

“It has been very scary and very hard” for home-care clients, said Seattle attorney Lisa Brodoff.

Like many other states, Washington pays for home-care services under its Medicaid program. About 24,000 elderly and disabled people get taxpayer-funded care so they can live in their homes.

Home-care costs about a third of the cost of nursing home care. Long-term care is one of the biggest budget drivers for states. Many states have recently cut or tried to reduce their spending on home care as a part of their solution to budget woes.

  1. Don't miss these Health stories
    1. Splash News
      More women opting for preventive mastectomy - but should they be?

      Rates of women who are opting for preventive mastectomies, such as Angeline Jolie, have increased by an estimated 50 percent in recent years, experts say. But many doctors are puzzled because the operation doesn't carry a 100 percent guarantee, it's major surgery -- and women have other options, from a once-a-day pill to careful monitoring.

    2. Larry Page's damaged vocal cords: Treatment comes with trade-offs
    3. Report questioning salt guidelines riles heart experts
    4. CDC: 2012 was deadliest year for West Nile in US
    5. What stresses moms most? Themselves, survey says

In California, Gov. Arnold Schwarzenegger has proposed cutting $454 million in support for in-home caregivers next year, although he’s seeking to fill in the cut with more federal money. Oregon tightened eligibility requirements for home care because of its budget crisis.

Last year, and again this year, Washington state gave home-care workers a raise. But the state also capped enrollment in the program, made eligibility requirements stricter and instituted a new rule that says home-care workers who live with their clients can’t get paid for chores such as meal preparation, laundry and shopping. The live-in worker would be doing those things anyway, the state’s reasoning goes.

That’s why Hammer’s hours, and her paycheck, decreased so dramatically. The “shared-living” rule, as it’s called, makes no sense to her.

“Because we live in the same house, they think I would wash his clothes with my clothes — NOT! He’s incontinent!” Hammer said indignantly. She thinks the people who make the rules would change their minds if they followed around a home care worker for one day: “They don’t realize you’re dedicated to one thing, and that’s that person.”

New rule defended
Penny Black, home-care services director for the state Department of Social and Health Services, defended the shared-living rule.

The state wants to help clients, she said, but in a “cost-effective manner.”

“When someone is living with a client, certain tasks can be subsumed when you’re doing tasks for yourself,” Black said. Even when a client such as Barzen is incontinent, requiring extra laundry, and diabetic, requiring special meal preparation, the worker shouldn’t get paid for that extra effort, she said.

“We felt that those extra kinds of tasks were 'de minimis,”’ Black explained, using a term that means, roughly, “a trivial matter.”

Barzen’s attorneys think the state’s policy violates state and federal laws that guarantee disabled people the right to choose their own caregivers. They say Barzen is being wrongfully penalized with fewer hours of paid help for choosing a caretaker who lives across the hall instead of one who lives across the street.

“For Mr. Barzen, few decisions are more significant than his choice of the person that will provide the care he needs to continue to live every day outside of a nursing home,” wrote Dan Krische, who represented Barzen for free at an administrative hearing in March. “State and federal statutes and regulations protect Mr. Barzen’s choice of provider.”

The judge at that hearing upheld the state’s decision to cut Barzen’s hours. Now Hammer and Barzen are appealing to Superior Court, challenging the shared-living rule. The decision in their case could affect hundreds of state residents in the same situation.

But the stress of living on $300 a month has already taken a toll on Hammer. She’s given up every luxury and semi-luxury she can think of — she hasn’t filled some of her own prescriptions for months, she shops at a dollar store, and she drinks soda pop instead of milk because it’s cheaper.

Even if they ultimately win in court, Hammer and Barzen have already lost a lot. When they sell the house, they plan to move to a small town in Montana where Hammer lived before moving to Seattle. They hope things will be better, but they’re also afraid of starting over again.

“The packing and moving is like casting off in a row boat to go to Hawaii,” Hammer said. “We have good memories in some of those boxes.”

© 2012 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Discuss:

Discussion comments

,

Most active discussions

  1. votes comments
  2. votes comments
  3. votes comments
  4. votes comments