Alyssa Emery transferred Dannielle LeClair to the bathroom for a bath. LeClair, 22, lives with her dad and stepmother in Ham Lake.

Jeff Wheeler, Star Tribune

Balancing the cost of care

  • Article by: JIM SPENCER
  • Star Tribune
  • March 22, 2011 - 2:42 PM
Lance Hegland got out of bed the way he always does. A personal care assistant rolled his limp body back and forth, working a sling underneath him, then cranked him aloft in a hoist and lowered him into a motorized wheelchair. Hegland, who is 38 and has muscular dystrophy, will endure almost anything to avoid going to a nursing home. What he may not overcome are recent cuts to state-paid personal care assistance, known as PCA.

Allegations of billing fraud in a 2008 legislative audit and a 164 percent increase in spending from 2002 to 2007 made PCA an easy target for officials trying to reduce state spending. But the strategy to control a runaway program also eliminated crucial services to hundreds and reduced services to thousands of Minnesotans with disabilities. More severe cuts loom as the state confronts a $6.2 billion deficit and has nothing but hard choices left to erase it.

By July, nearly 2,600 Minnesotans with disabilities -- roughly half of them children -- will no longer qualify for state payments for care assistance, which allows them to live at home. Another 6,000 people younger than 65 are expected to have services reduced. In addition, thousands of low-income senior citizens with disabilities -- the state can't say how many -- will have PCA cut or ended. Hegland is an example. With virtually no use of his legs and arms, he once qualified for 22 hours a day of personal care. New state rules cut him to 18.

"If I lose one more hour per day of PCA, there's a chance I might have to go to a nursing home," Hegland said. "If my hand falls off my controller, I'm stuck for hours in my wheelchair in the middle of my apartment. What am I supposed to do, sit around and urinate on myself?"

For Hegland, who has earned bachelor's and master's degrees, PCA is the difference between living productively and being warehoused.

For taxpayers, balancing the budget by cutting services to those with disabilities could backfire. On average, advocates say, nursing homes cost three times more than PCA.

"We made cuts that are going to harm people's lives," admitted state Sen. Tony Lourey, a chief author of the 2009 legislation that cut access to PCA. Lourey, a DFLer from Kerrick, said he helped write the 2009 law to stop more drastic cuts by Republican Gov. Tim Pawlenty. "People are not being served in the manner I'd like to see," Lourey said. "We were under pressure to cut, and these people had no voice. We need people to talk about this."

'Promises we couldn't keep'

Whatever discussion occurs will take place in a Legislature newly led by Republicans vowing to cut services rather than raise taxes. An array of Minnesota programs aimed at helping those in poor health or with other needs will face fresh scrutiny, and the government's role in their lives could be redefined.

Rep. Jim Abeler, a Republican who is the House health committee's incoming chairman, promised to reassess every program, including PCA, to determine what is "essential, important and nice." But he added: "Human services have been growing at unsustainable levels. I think we made some promises we couldn't keep."

Officials at the Minnesota Department of Human Services say that rule changes for PCA will match people with disabilities to more appropriate sources of care and help regulate a system once vulnerable to fraud. State officials say PCA grew too large, ballooning from $153 million in 2002 to just over $400 million in 2007. A 2008 audit identified allegedly fraudulent billing, including 400 cases in a single month where the state paid care assistants for working more than 24 hours in a day.

No one disputes that the 2008 PCA audit found abuse. What the audit did not address was whether Minnesotans with disabilities received help they did not deserve. In one case, the state recently told a 92-year-old woman who had been hospitalized twice in the year before her reassessment that she needed less personal care. "Sometimes," her daughter wrote in an e-mail, "the bureaucracy gets in the way of common sense."

Started in 1977, PCA was "a consumer-driven program developed by people with physical disabilities who wanted to have more control of their lives," said Loren Colman, an assistant state commissioner of human services. "The program has grown to try to accommodate more people with more problems."

Colman says county programs are better suited than personal care to help those with developmental disabilities and mental illness.

But county waiting lists to help those with developmental disabilities totaled 3,858 in November 2009 and has grown since, said Anne Henry, an attorney with the Minnesota Disability Law Center. Long waiting lists also exist for other PCA alternatives. The result, according to Henry, is a Catch-22 where the state cuts people off PCA or reduces their hours of care when programs that might better serve them have little or no room to take them.

Meanwhile, Lourey and others involved with the changes say the governor and legislators were not thinking about improving health care when they passed laws cutting PCA.

"To be brutally honest, the reason we did this was to save money," said Rep. Larry Hosch, DFL-St. Joseph, who like Lourey reluctantly sponsored the House bill cutting PCA in order to minimize the pain. "We are trying to balance the budget on the backs of some of our most vulnerable citizens."

'I can't maintain her'

The registered nurse sobbed as she described her 9-year-old adoptive daughter's third hospitalization since Minnesota cut the disabled child's personal care assistance by 65 percent. The child suffers from rages brought on by fetal alcohol spectrum disorder. She had gone on yet another hourlong rampage, hitting and scratching herself and hitting, kicking and biting her mother while screaming and trying to destroy everything in her path.

"I adopted her when she was a baby," the nurse said as she wept. "The agreement was that there would be some state help if there was something wrong with her. Now, I can't maintain her in my home."

The woman didn't want her name printed to protect her daughter's identity.

The child's behavior no longer qualifies for monitoring by a personal care assistant. Instead, the state recently placed the child in a group home that will cost taxpayers tens of thousands of dollars more per year than PCA.

"We were managing her at home with the personal care that we had," her mom said. "The people making these cuts have no idea how this trickles down to affect the children."

State officials promise to find other programs to offset reductions in PCA. But advocates say alternatives have also been trimmed.

"I think some people will just be cut off," Henry said.

In rural areas, PCA cuts have created logistical problems that leave some people hard-pressed to use what hours of care they have left. Billy Corbin lives in an isolated area 200 miles north of the Twin Cities. Having broken his neck twice, Corbin lacks feeling in his feet and hands. He needs help dressing and bathing. He can't cut up food.

He also can't get as much care assistance as he used to. The state cut Corbin's PCA from 4.5 hours per day to one hour per day. They might as well have taken it all, he said. "Nobody's going to drive out here to work one hour a day."

No choice but group homes?

While many people already suffer, Henry predicted that the number will rise dramatically after July 1, when those with behavior problems related to mental health and those who need help carrying out only one "activity of daily living" will no longer be eligible for PCA. Most of those losing coverage will be children.

In Coon Rapids, Carol Olson's 15-year-old son, Mark, suffers from developmental delays, attention deficit disorder and seizures. He's had open-heart surgery. Yet a new PCA reassessment found that he needed fewer hours of care.

"Our son at one time got six hours of help a day," said Carol Olson. "Last year, it went down to four hours a day. Now, it's down to three hours a day. I assume that next year he won't get any services. What's going to happen is you're going to force kids into group homes."

State officials insist they will find ways to keep that from happening. They point out that as of Aug. 31, reassessments have increased personal care hours for 3,928 of 15,336 clients who were queried; another 3,091 saw no change in services. Still, people being shed from the program and those having service hours cut continue to rise. In addition to 515 people with disabilities who lost all PCA from December 2009 through August, another 336 new applicants were denied service and 4,368 had services partially cut. After July 1, state officials expect to eliminate services to another 2,000 people under 65. Meanwhile, thousands of senior citizens in managed-care plans will lose some or all PCA.

Pawlenty's budget proposed to remove nearly $121 million from PCA between fiscal years 2010 and 2013. The Legislature reduced that figure to $81.6 million over the four-year period. The governor then used an unallotment to increase the cuts another $2.1 million. Right now, the state intends to save $83.7 million by the end of fiscal 2013.

The monetary impact will be at least double that amount, the Disability Law Center's Henry claims, because each state dollar that gets cut reduces a matching Medicaid dollar from the federal government.

If PCA cuts force many people into more expensive institutional living, advocates say the reforms will be lose-lose.

Parents who adopted children with disabilities feel especially betrayed.

"These adoptions are predicated on the assumption that you would get these services," said Becky Gawboy of Tower in the Iron Range. With her husband, Gawboy adopted 12 disabled children, many of whose mothers abused alcohol. "We lost about 300 hours a week [in PCA reimbursements]. We used to have someone here at night because one of the effects of fetal alcohol syndrome is that they don't sleep. Now, we sleep with a baby monitor to listen to the kids, which means we don't sleep."

Hundreds of miles away, a southern Minnesota mother of four disabled adoptees echoed Gawboy's frustration.

"I have a 16-year-old son with Down Syndrome, fetal alcohol syndrome and autism, who is severely mentally delayed," said the woman. "He had 10 hours a day of personal care. They cut that down to five hours and 15 minutes. It's the new assessment. He can get his own food in his mouth. He can't cut food or know how much to put in his mouth. But as long as he can get food in his mouth, he doesn't get any points."

The woman also has a 13-year-old adopted daughter with fetal alcohol spectrum disorder. The state cut her PCA hours from 10 a day to 3.7. The child's behavior that the state no longer treats includes what her mother calls "raging."

"She'll throw things," the mom said. "She'll kick and bite and pull hair on others. She has pulled her braces off of her teeth. It can go on for a couple of hours, but it doesn't count for PCA."

Cutting back on her hours

Dannielle LeClair is 22 years old but functions as a two-month-old. She contracted viral meningitis in the first week of her life and entered into a near-vegetative state. But her father and stepmother, Mark and Belinda LeClair, have kept her at home since her dad got custody when she was 3.

Now, the state has decided that the disabled woman from Ham Lake qualifies for fewer PCA hours.

"They changed the way public health nurses can assess patients and they put caps on how much time [clients can get] for each kind of service," Belinda LeClair said.

The LeClairs are thankful for whatever state aid they get. But in reducing personal care assistance, they said, Minnesota has heaped stress on families and pain on those powerless to change their circumstances.

PCA cuts, said Mark LeClair. "are hurting the people who need help the most."

Jim Spencer • 612-673-4029

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