Clara Nakumbe with her son
MINNEAPOLIS - Clara Nakumbe gave up a successful day care business years ago so she could devote her full attention to taking care of her own 39-year-old son Siran.
"When they first diagnosed him with multiple sclerosis in 2002, he could still work a little and take care of himself," Nakumbe told KARE.
Now, Siran requires around-the-clock care. Clara prefers that he gets that in her Minneapolis home rather than somewhere else.
"Not all facilities do a good job of taking care of the patients," she said.
"With Siran being as vulnerable as he is he couldn't tell anybody what he needs. He can't see. He is 100 percent vulnerable."
Because of the advanced state of his MS, Siran qualifies for 11 hours of personal care each day financed by government. It's still considered less expensive to taxpayers than a group home or skilled nursing home.
The State of Minnesota contracts with companies that hire the home care workers. Clara, like many other parents of critically ill family members, was hired to provide part of that care.
She takes care of Siran five hours each day, while one of his siblings covers the other six hours of paid time.
"That leaves 13 hours each day uncovered. Of course, I do the other 13 hours for free. That's how a lot of families do this, and the government now counts on that happening."
Push to Unionize
Nakumbe is one of many personal care attendants who will be pressing the state legislature for the right to unionize, something that's currently not allowed for home health workers who take care of relatives.
The pay varies depending on the company that hires the direct care workers, but one study found they earn on average $9.22 per hour. Most do not receive paid vacation, paid sick leave or health coverage through the job.
"I want the governor and lawmakers to know that this is important work we're doing, caring for vulnerable people," Nakumbe said.
"But home care workers have responsibilities and bills to pay. I have a mortgage. I have health care I have to pay for myself, not through this job."
Beyond that, the goal of organizing such care givers is to raise the standards in the profession that is plagued by high turnover.
"If we could get a decent wage, some of the benefits, we could attract people to this home care work that we're doing. It would be easier to find enough workers, and the cost to the government would be even less.
She said Siran was perfectly healthy as a child, and played hockey at North High School in Minneapolis. He then went to Howard University in Washington, D.C., where he earned a degree in chemistry.
He was working a chemist in the Twin Cities when he started having trouble completing tasks. Then he began to fall down. He reached the point where he could no longer pick himself up when he fell.
"That was when I made the decision I would give up my career and come home and take care of him," Nakumbe said.
"He already deals with a lot of emotions, asking why this happened to him. And to have him in a strange place with strange people would be doubly hard for him."
Her job goes far beyond feeding and bathing Siran, or making sure he gets his medications.
Clara regularly turns his body in his bed. She suctions mucous out of his mouth, so that his lungs will function better. The job also requires her to changes the bandages around his catheter, and replace the bags that collect his urine.
"He can still hear us and understands things perfectly well, but he can't talk very much anymore."
At that point Siran uttered the word "pop" and his face lit up when she explained to a KARE crew that her son gets to have one bottle of Pepsi each day.
A study by the Paraprofessional Healthcare Institute, financed in part by the Service Employees International Union, predicted that home health care workers will be even harder to find as the baby boom generation ages.
The report forecast a "care gap" of 53,000 workers in Minnesota in the next decade. That's the difference between the demand for direct care workers, including family caregivers, and the availability of those qualified or willing to do those jobs.
On Wednesday, House Speaker Paul Thissen, a Minneapolis Democrat, told KARE that the legislature will consider the unionization proposal this year.
"Personal care workers should have the same rights everybody else has to organize. That bill will be taken up in the legislature and move forward," Thissen said.
"I don't know exactly what the outcome is, but it is something that we're going to be discussing in the legislature. I don't know why we would distinguish home care workers from anybody else's right to organize."
"Those home care workers are just as important as other health care workers, and they should have the right to organize," Rep. Thissen said.
"Whether it will pass or not remains to be seen."
Republicans, who are now in the minority in both chambers of the legislature, are expected to oppose any such moves.
On an episode of Almanac on Twin Cities Public Television last month, Sen. Dave Thompson, a Lakeville Republican, predicted the public would oppose allowing such caregiver to organize.
"I appreciate what these people do for their family members," he said.
"We need to have a public discussion about how much money do we want to put into that. And we really shouldn't create another class of people that become union members."
(Copyright 2013 by KARE. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.)