LYLE — At a recent hearing conducted by phone, Randy Krulish was asked by a judge to raise his right hand so he could testify under oath.
Krulish, a 56-year-old Lyle man, couldn't. He had to explain to the judge that as a quadriplegic, he couldn't raise his hand.
Krulish, a former paraprofessional with the Lyle school district, was appealing a state decision to reduce the number of hours he receives in personal care assistance. A quadriplegic since a diving accident at age 12, Krulish can't groom or dress himself, eat or take a bath, brush his teeth or move from his bed to his wheelchair without the help of a personal care attendant.
The judge rejected Krulish's appeal; she said a law that took effect Jan. 1 didn't give her leeway to override the Minnesota Department of Human Services.
For Krulish, the setback was the latest disappointment in a process that he says has failed to adequately consider his health and physical needs. The fact that the judge had asked him to raise his right hand was a sign that she didn't know his condition.
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"She wasn't as familiar with my case like I thought she should be," Krulish said.
Krulish initiated the appeal after the state told him he would be getting 17.5 fewer hours per week in PCA care. Since then, some of the hours have been restored, but he still has 10 fewer hours per week.
If the decision stands, Krulish says, it would force him into a nursing home, which he argues doesn't make sense for the state because nursing home care costs at least twice as much as the PCA he receives.
An exhausting process
Typing his letters with a wooden stick held by his mouth, Krulish has continued to press his appeals. He has asked Minnesota Department of Human Resources to reconsider its decision, but he admits that the effort is exhausting, the prospect of ending up in a nursing home depressing in the extreme.
"You're talking about a quality of life issue here," Krulish said. "I enjoy living in my own apartment and being able to do my own thing. It would be very disheartening and depressing" to end up in a nursing home.
A delicate balance
Krulish's situation also underscores the challenge the state faces in calibrating the balance between health care needs and skyrocketing health care costs. For years, such costs have galloped at double-digit rates, and PCA services are an example of the state's efforts to rein in costs.
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PCA services are paid for by Medical Assistance, the state's Medicaid program. Begun in 1977, the PCA program started out with a narrow focus — to keep non-elderly adults with physical disabilities out of more costly nursing homes.
Over time, eligibility expanded to include people of all ages, and program costs soared. The number of PCA recipients nearly tripled from 4,314 in 2002 to 11,652 in 2007, even though the cost per recipient declined, according to a legislative audit report.
Spending over the same period jumped from $88 million in 2002 to $219 million in 2007.
The costs reflected not only the state's commitment to deinstitutionalization but also the ability of health care to help people survive injuries and accidents they would have died from decades ago.
The auditor's report was the catalyst for legislative hearings in 2009 on PCA services. Legislators grappled with how to pare the program's runaway costs.
Assessment is tough
The need for a common assessment tool for calculating the level of care a person needed became clear during the hearings, said State Rep. Kim Norton, a Rochester Democrat who is a member of the health policy committee that examined the issue. Evaluations varied greatly. Two people with identical disabilities but living in different parts of the state could receive different assessments depending on the nurse doing the evaluation. The evaluation also made it easier for fraud and abuse to take root.
"Sufficient state oversight and accountability of the program are lacking," the legislative auditor said. "Fiscal integrity, quality assurance and the assessment process in the program require attention."
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The new assessment was designed to take subjectivity out of the process.
"There is supposed to more equity in the evaluations," Norton said. "We were being a little too generous, according to what the auditor said, in providing the level of care we were giving people, perhaps more care than they needed."
Some worry that the new instrument has become too blunt, a hardened template that fails to adequately take into account people's individual needs. They cite Krulish as an example of its shortcomings.
"Basically what's happened is the max amount of hours that a person like Randy or any other quadriplegic used to be able to get would be 14 to 14 1/2 hours a day. Now the max is 11 hours a day," said Lori Mortensen, owner of All Generations Home Care, the agency that provides Krulish with PCA care.
The state recently agreed to restore an hour to the daily care Krulish would receive, providing him 12 hours of daily PCA care. That would still be 10 fewer hours per week than what he previously received.
"It's going to help, but it's still not enough," said Mortensen. "I still have to figure out where to safely take hours away."
She estimated the amount of care he gets at about $77,000 a year.
Basic necessities
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Krulish's condition means activities most people take for granted are drawn-out tasks for him and his personal care attendant. When Krulish wakes up each morning, he has to be dressed. He uses a catheter to urinate so his bed bag has to be emptied and replaced with a leg bag. The morning ritual also involves hoisting Krulish from his bed to his chair with a Hoyer lift.
That's just in the bedroom. Krulish also brushes his teeth and has his hair washed with the aid of a PCA worker. Then there is breakfast and washing clothes.
"Sometimes, it's so much I forget what some of them are," he said.
Krulish said life in a nursing home is not an option for him. He plans on pursuing every appeal available to him and is hoping for the best.
"I just have a lot of faith and confidence that things are going to work out," he said.
