Caretaker pay cut by 20%
For the past seven and a half years, Vickie DeWald has been caring for her grandson, Elias DeWald, while his mother is working.
About a month ago though, she received notice that, because of state budget cuts, her pay would be cut by 20 percent for the care she provides.
When Elias, who will be 10 next month, was 2½ years old, he was diagnosed with autism.
"I've been taking care of him ever since. You can't take your eyes off him," she said.
She said he wanders off easily and doesn't do other things needed to care for himself.
"I do a lot of work, and I don't understand why they say we don't deserve the same rate of pay," she said.
Change in the law
DeWald, and other personal care assistants through New Dimensions Home Health Care -- who DeWald is employed through -- received a letter that said effective Oct. 1, there was a change to the Relative Caregiver Law in Minnesota.
Now, fee-for-service PCA service claims are paid at 80 percent of the allowable rate when the provider is a parent, sibling, adult child, grandparent or grandchild.
DeWald said that as a relative, she has just as much value as a caregiver than a non-relative caregiver. She questions if the state cut the pay of relatives because "if we're family, we'll take care of them anyway?"
Where's the cost savings, and who really pays?
But because of the cut, DeWald said, it's actually going to cost the state more money. For instance, she'll either need to get a second job or she'll have to get a different full-time job and the state would have to pay for a non-relative to take care of her grandson.
Also, with the pay cut, some caregivers can now qualify for food stamps or heating assistance, costing the state more.
"I keep asking myself how I'll heat my house this winter," she said.
She has lost about $500-$600 a month with the pay cut.
Besides taking care of her grandson, she also cares for her husband and brother-in-law, but she doesn't get paid for that, which is fine with her.
But, if she has to get another job, will the state have to pay for care of those two then, too?
And what is the likelihood that she'll find a job, also, she questioned.
"With this economy, is there even a job out there?"
She has written letters to State Rep. Paul Marquart and U.S. Rep. Collin Peterson to no reply, and she's writing other government leaders. She's taking it to the federal level because the state doesn't seem to care.
"It's a budget thing."
In her spare time while her grandson is at school, she said she goes to the library and does research, trying to find what she can do to fight the new law.
"They're taking it from the ones who really need it," she said of not only the pay cut but also the care from the relatives that need it.
"I don't know where to begin or where to go."
Carol Ackerman, who said her 32-year-old autistic son is at the developmental level of an 18-month-old, has been fighting an uphill battle for years as well. But, because it's her son, she doesn't mind because it's important for him.
"Ben never used pot, or even smoked, drank or did any drugs. In other words, none of his problems came from him making wrong choices -- he's never been able to make any choices," she said in an e-mail from her home in Verndale. "He did not make himself this way."
But, she said, many times the focus is taken off those who were born with or developed problems at an age, like Ben did when he was only several months old.
"We live in a society where we'll do everything we can to house, feed and help the people who made the choice to abuse drugs and even abuse other people. And I realize it's important to help them, too. I'm not against it," she said.
"We pay for correctional institutions/prisons that are more like country clubs, but we can't help precious families to take care of their own innocent relatives? I say anyone who is for this wage cut is inhumane and irresponsible."
The better caregiver
More than just the fight for her pay, it's about care as well. Not that a non-relative would do a better or worse job with her grandson, but it would be a big change for him, DeWald said.
"A stranger isn't going to understand his needs like I do, like his mother does," she said.
Besides autism, her grandson suffers from hip problems, chronic ear infections and headaches.
Phyllis Rust of Campbell, Minn., can attest to the better care she can provide her adult daughter rather than the strangers that filter through the house.
In a letter to Sen. Gary Kubly, she explained how her daughter has been affected over the years by her caregivers.
"We currently have two family members involved with the care of our daughter. She has never been happier or healthier than since family members have become her primary caregivers. She tolerates stress at much higher levels than she has ever able to before due to the fact that she is comfortable with having the familiarity of family on a steady basis.
"For years we had strangers in our home every day. Almost weekly it seemed we were having new people being trained to care for her. The stress it causes for her and the entire family is totally unbelievable. Besides that who has her best interest at heart and who knows her needs better than family members? Certainly not those persons who are here today and gone tomorrow."
That was before the cut was made, something Gov. Mark Dayton didn't support and vetoed, but ultimately conceded to end the government shutdown.
Rust sent her message on to Dayton's office.
"The final compromise protects funding for the governor's priorities: special education, services for seniors and the disabled and getting Minnesotans working again, though the plan to pay for these services relies on borrowing and continuing the school aid shift. To reach a compromise, the governor agreed to the funding methods the legislative majorities insisted on, though they are not ones he agrees with," the governor's assistant, Benjamin Hill, replied to her.
Ackerman has also written many letters over the years about the care her son receives.
"I feel almost like I am forced to 'beg' just to maintain simple help," she said. "I had to give up working outside of our home as it became harder for my husband and I to work out schedules with our employers to accommodate Ben's care. And that was OK. We tried to rely on outside caregivers, but it was difficult to count on people to show up at all, let alone on time."
Over the years while her son, Ben, was growing up, Ackerman said she quit her job outside the home and tried to run a licensed daycare in her home to help with income. Because of her son's need for constant care and paid help that didn't show up, she eventually quit the daycare business as well.
"It just turned out that at that time when I spoke to New Dimensions about having to quit my job at the group home to care for Ben myself, they told me parents of a special needs child could be a Personal Care Giver as long as they were not the legal guardian," she said. "So like Moses' mother, I always say, I had to sacrifice my guardianship for Ben so that he could obtain the best care. His dad is the only legal guardian."
She also took certified nursing assistant classes at a local college -- and paid for them herself -- so she would be more qualified for the job.
And while it was the right move for her family, and she eventually got paid for a full-time job, she didn't get to take nights off like someone coming into their home would have.
"We don't get paid for hours between 10 p.m. and 6 a.m. like group homes do. And he has just as horrible seizures during those hours as he does during the day," she said.
Regardless of pay, it's true, relatives are likely to provide the care their loved ones need and deserve. But, they still want to be paid their worth, the same as any other caregiver.