A fight for help
LYLE — Randy Krulish can't blow his nose without someone's help.
He cannot feed himself, brush his teeth, use the bathroom, shift his body in his bed or even cough without the help of personal care attendant.
When, as a 12-year-old boy, Krulish broke his neck in a diving accident, doctors said he'd probably live no more than 15 years. But in the 44 years since then, the Lyle man has gone on to defy the medical professionals and play a contributing role in this southeastern Minnesota city of 500.
He has worked as a paraprofessional in Lyle Public Schools. He was the voice of Lyle high school sports for two decades as a P.A. announcer at football and basketball games. He was involved in local cancer telethons, was chairman of a Fourth of July committee, and once served as grand marshal.
But this spring, Krulish was informed by the state that the amount of personal care assistance he receives and depends on to function was to be reduced from 13.5 hours to 11 hours a day, 17.5 hour per week.
Krulish says he cannot function with less care from PCA attendants, and if the state's decision stands, he will be forced into a nursing home.
In May, Krulish appealed the decision, but a judge ruled that she had no jurisdiction to overrule the change under a new law that took effect Jan. 1. He has since asked the Minnesota Department of Human Services to reconsider. While he awaits a decision, he continues to receive the same amount of help he has received for the last decade.
Krulish says he was never raised by his parents or siblings to view himself as a disabled person, to see his wheelchair as something that defines him. But the recent ordeal has undermined his sense of stability as few things have.
"I woke up this morning and I got in a wheelchair. So what? That's my life," Krulish said in his Lyle living room. "But this hit me full force and makes me think that simply because of my physical condition, I'm not receiving the rights and freedoms I should enjoy in this country. And that, to me, is scary."
The loss of PCA hours was the result of a new assessment tool county public health nurses are required to use in calculating the hours a person may receive. With health care budgets exploding, the state is hoping to rein in costs and make the assessment less susceptible to the fraud and abuse that has plagued the program.
Some home health agency officials see the new assessment as an improvement, making the process of evaluation more fair and less subjective to the whims of county nurses.
In the past, "it was sort of up to the judgment of that particular public health care nurse who was doing the assessment, and now the tool is simplified. It's very objective. This is what you do," said Priscilla Dudley, manager of the PCA program for the Southeastern Minnesota Center for Independent Living, which serves 300 people in an 11-county area.
Critics say the new assessment is too blunt and inflexible to accurately assess the needs of all PCA patients.
The Minnesota Disability Disability Law Center, a legal resource for people with disabilities, estimates that between 6,000 and 7,000 current PCA recipients out of the more than 15,000 people younger than 65 who receive services will have their hours cut. Others are expected to see an increase in hours.