Advocates for disabled send a distress signal to legislators

Squeezed by a dangerous shortage of personal caregivers, Minnesotans with disabilities and their allies are pressing for legislation that would reform the state's 40-year-old system of paying for home health care.

A group of individuals with disabilities, many in wheelchairs, testified at a state Senate hearing last week that Minnesota needs urgent measures to expand the supply of workers who care for tens of thousands of vulnerable adults and children in their homes. The state-funded personal care assistance program, they argue, has not kept pace with burgeoning demand and a more competitive labor market, thrusting many people with complex health needs into life-or-death situations.

"The home care infrastructure is crumbling beneath us," said Jeff Bangsberg, 60, a disability advocate from New Hope who has quadriplegia. "If nothing is done, people will die."

Bangsberg and other grass-roots activists testified on behalf of proposed legislation that would establish a new, complex level of care within the state's home health program, which in 2015 served 40,600 Minnesotans in their homes at an annual cost of $832 million.

Under the proposal, home-care aides would get a 20 percent wage increase, amounting to $2 to $4 an hour, if they care for people with complex health needs, defined as those requiring 10 hours or more of care per day. In addition, aides providing such services would be required to get specialized training so they can handle more complicated tasks, such as preventing pressure ulcers (bedsores) and administering feeding tubes. About 3,000 people statewide would qualify for the new, enhanced level of care, according to state estimates.

The proposal, which is supported by prominent lawmakers on both sides of the aisle, would address what disability advocates have long considered a major problem: Personal attendants who care for people with basic needs, such as grooming and dressing, are typically paid the same hourly rate ($10 to $12 an hour) through Minnesota's Medical Assistance program as those who provide complex medical care. As a result, home care workers often have little incentive to take on difficult clients who may have respiratory problems, feeding tubes and other complex needs. Increasingly, as the job market has improved, caregivers are switching to better-paying jobs and clients who require less-demanding care.

"The fact is, the people with the most significant needs are having the hardest time finding qualified staff — and that's fundamentally unjust," said Sen. John Hoffman, DFL-Champlin, among the bill's supporters.

For many people with severe physical disabilities, the shortage of home care assistance has reached a crisis point. Some have been forced to go without care for hours or even days at a time, putting their health in jeopardy, say advocates.

When home care shifts go unfilled, the health effects can be dramatic. Tim Benjamin, executive director of Access Press, a newspaper for Minnesota's disability community, blames the home care shortage for the partial amputations of both his feet. Last year, he was unable to find personal care aides who could regularly reposition him in his wheelchair and help with range-of-motion exercises. The resulting lack of movement caused pressure sores to develop on his feet. To prevent infection, doctors amputated the outer bones and small toes of his feet.

"It's part of what happens when you go without consistent, quality care," said Benjamin, whose feet bear jagged scars from the amputations.

Kim Higgins, 52, of Hopkins, has been in a panic since she learned early this month that her longtime caregiver is leaving for a better-paying job on Feb. 17. Higgins, who became a quadriplegic from a motorcycle accident 31 years ago, said she is unable to bathe, eat, get out of bed or take her medications without daily assistance. But so far, no one has responded to her multiple postings on Facebook, Indeed.com and Craigslist. Higgins said she fears ending up in a hospital or a nursing home if she is unable to find a new caregiver within the next week.

Like others, she wanted to testify at the Capitol this week, but was unable to find a caregiver who could accompany her. "The whole experience has been terrifying," she said. "People without disabilities have no idea what we're going through."

The shortage is only projected to get worse. Because of the growing needs of an aging population, the state workforce agency projects that Minnesota will need an additional 59,000 direct care workers through 2024, according to a recent report.

Kim Tanfield, a licensed social worker at In Home Personal Care of Golden Valley, which has about 80 home care clients, said her agency is now recruiting high school students as young as 16 because more experienced caregivers are in such short supply. About once a week, Tanfield said she has to call a client at home and urge the person to arrange an emergency backup, because her agency cannot fill the necessary shifts. Two years ago, such calls were unnecessary, she said, because the agency still had plenty of personal care attendants.

"It's heartbreaking," Tanfield said. "I've been in the industry for about nine years now and I've never seen anything like it."

The idea of creating a separate, enhanced pay structure for complex care services is starting to gain momentum. Beyond the pending legislation, Gov. Mark Dayton has proposed a more modest 10 percent wage increase for personal care assistants serving people with complex needs. However, this increase would affect a much smaller group of people, 545 clients statewide, who qualify for 12 hours or more of care per day.

Chris Serres • 612-673-4308 Twitter: @chrisserres