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Regulation change would have forced Kenai woman out of home

Not ruling out independence

Posted: Sunday, January 15, 2006

 

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  Kathleen Muller uses a pointer to type an e-mail message on a computer in her Kenai home. Muller¿s mobility is restricted by cerebral palsy. A change to state regulations proposed last summer would have made it necessary for Muller to move into an assisted-care facility. Photo by M. Scott Moon

Muller receives a wet kiss from her dog Gracie. “Living here (in my own home) allowed me to grow up,“ Muller said.

Photo by M. Scott Moon

The state has dropped a proposed change in the way it administers personal care assistance, a change that could have resulted in forcing a disabled Kenai woman to move this year.

Last summer, a lengthy document spelling out planned changes in Department of Health and Social Services regulations were interpreted by Kathleen Muller to mean she was being forced out of her independent living apartment into a nursing home.

Because she was born with cerebral palsy, the 50-year-old Kenai woman does not have good use of her hands. She is confined to a wheelchair, cannot cook or feed herself and cannot use the restroom or bathe herself.

She needs the help of a caregiver 24 hours a day.

A personal care assistant (PCA) provided by Frontier Community Services visits her in her apartment off Aliak Drive for nine-plus hours a day, and a supported-living services assistant comes for up to 18 hours a day.

In an attempt to avoid possible duplication of services, the state proposed to disallow one or the other.

That proposal, however, would have left Muller without a caregiver for at least six hours.

 

Kathleen Muller uses a pointer to type an e-mail message on a computer in her Kenai home. Mullers mobility is restricted by cerebral palsy. A change to state regulations proposed last summer would have made it necessary for Muller to move into an assisted-care facility.

Photo by M. Scott Moon

Assuming she needs to sleep at least six hours, that might work, except if she needed to get up during the night to use the bathroom, except if she had one of her asthmatic attacks during the night, except if her home caught fire or someone tried to break in during the night.

All of those exceptions are real possibilities.

The state elected to drop the PCA proposal to disallow one assistant or the other.

“I am very grateful,” Muller said by phone last week.

“I will be able to stay where I am. I won’t have to move,” she said.

In 1992, the Department of Health and Social Services presented Muller with its “Giant Step Award,” when she took it upon herself to get out of a nursing home and into independent living quarters.

Since that time, she has learned to use a computer, attending classes at Kenai Peninsula College, and has written about 400 poems, many of which she illustrates with watercolors.

“Living here (in my own home) allowed me to grow up,” Muller said. “I thank God for the support I get. Without it I wouldn’t be here.”

When the state proposed changing its rules last summer, Muller refused to sit by quietly.

She immediately penned a letter to the editor protesting the DHSS proposal.

Muller also expressed her objection to a change that might have required her to designate a power of attorney.

The state, however, has since said that requirement would only pertain to people incapable of making their own legal decisions regarding their care. Muller is capable.

According to Tammy Meier, personal care assistance program manager for Frontier Community Services, the power of attorney regulation as well as other proposed PCA changes are currently being reviewed by the Alaska Department of Law before being sent to Lt. Gov. Loren Leman for signature.

Meier said the PCA Providers Association is working with DHSS to ensure changes go through as easily as possible.

“The lawyers now need to say, ‘No,’ and send (proposals) back, or ‘OK,’ and go forward,” Meier said.

“It looks like the changes will be implemented March 1,” she said.

“A lot of what we went in with initially was revised,” said Rod Moline, director of the Division of Senior and Disabilities Services.

Moline said the proposal to not allow people to receive assistance from PCAs and supported living services now states they may not receive both types of assistance “at the same time.”

In other words, Muller may receive support living services for up to 18 hours a day and receive PCA services the remaining six hours of the day. She can remain in her own home.

Clarion photographer M. Scott Moon contributed to this report.



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