Personal care aides: Between budget and hard place

Since she began getting help from personal care attendants five years ago, Karen Boersma has run through about 20 aides from a dozen agencies.

"Some PCAs have been wonderful, some could not read English, many did not show up on time, some forged my signature on time cards and one stole my credit cards," said Boersma, 62, of Wayzata. (Back in 1954 she was Minnesota's first United Cerebral Palsy poster child.)

On top of that, her current PCA agency informed her last week that it no longer will work with her primary aide of four years, another step that leaves her angry and frustrated.

State investigators are finding problems throughout the system. A Legislative Auditor's report found that Minnesota's rapidly growing PCA program receives inadequate oversight from state agencies and is "unacceptably vulnerable to fraud and abuse;'' and a set of proposals by state regulators to tighten supervision, payment procedures and eligibility in the $400 million per year program.

About 25,000 Minnesotans with disabilities get help with dressing, bathing and other tasks from upwards of 40,000 PCAs through the service, which is funded by Medicaid, the state-federal health insurance for the poor. Ironically, the program was once conceived as a way to improve care and save money by allowing clients to stay in their homes rather than entering care facilities.

Changes proposed by the Minnesota Department of Human Services would require more training and oversight of the 600 or so agencies that bill the state for PCA services. The department would also require that the state pay an aide for no more than 310 hours a month and no longer pay for PCA services in assisted living facilities. In addition, it would require that a nurse or social worker supervise all PCA services quarterly.

But, in a step to address the state's projected budget deficit, the department also wants to cut costs in the PCA program. It proposes saving about $42 million by tightening program eligibility -- mostly by requiring that a client need help with at least two from a list of eight "activities of daily living" -- dressing, grooming, bathing, eating, changing positions, transferring from bed to chair, moving around and using the toilet.

That would eliminate about 2,100 people from the program -- including clients like Lilly A., of Minneapolis, who gets help with only one of those tasks. (She asked that her last name not be used because of harassment by a neighbor.)

With fibromyalgia, arthritis and spinal damage, Lilly, 59, lives with chronic pain, supported by Social Security disability payments and Medicaid. She can't lift anything heavier than a cup.

For eight hours a week, aide Riawa Smith goes to Lilly's apartment for light housekeeping, laundry, lifting, carrying and -- the only assistance on the proposed list of eligible care -- fixing meals.

"Anybody who thinks those other needs don't matter doesn't know much about disabilities," Lilly said. "Without this help, I will be living in dirt. I will be exhausted by pain when I try to do things I can't."

She was among 35 people who testified Thursday at the second of five days of state Senate hearings about the effect of Gov. Tim Pawlenty's proposed budget for health and human service programs.

Tightening eligibility is necessary to "control growth of the program, to make sure that our resources are being directed to people who require services, not just to those who like them," said Loren Colman, human services assistant commissioner.

Another change would require that people acting as the "responsible party" for clients who cannot direct their own care would have to live with those clients -- eliminating about 400 more people from the program.

Designed to ensure that someone actually oversees the work of PCAs, the rule would require a relative or friend of some clients with mental disabilities to move in with the clients to keep them eligible for help.

"The department is absolutely right to bring some fiscal integrity and oversight to the program," said Anne Henry, a lawyer and advocate with the Minnesota Disability Law Center in Minneapolis.

"But we have to keep some flexibility here,'' Henry added. "If we get too restrictive, we'll end up paying far more when [former clients] end up in nursing homes, emergency rooms and even jails."

Overall, Pawlenty has proposed changes that would make about 113,000 Minnesotans ineligible for Medicaid, and MinnesotaCare for low-income workers in order to balance a budget with a projected deficit of $4.8 billion, which could be as high as $7 billion.

Boersma's solution

After years of frustration with PCA problems, Boersma has found the solution, and she has enlisted members of her church to help.

"I'm going to start my own PCA agency," she said. "That way I can pay a decent wage. It's the only way I can be sure that both I and the PCAs who work for me will be treated with the respect we deserve."

Warren Wolfe • 612-673-7253