Could the state of Illinois remove mothers of disabled children from their roles as caregivers?
At least one such mother has already been threatened with that very thing.
Twenty years ago, Juliet Teixeira was a passenger in a car accident that caused a major brain injury and several other permanent physical problems.
Juliet is 37 now, and has been confined mostly to home and a wheelchair since her accident. She talks with the help of a communication device and is only able to walk short distances with assistance.
Nonetheless, her mother Deborah, who takes care of her on a full-time basis, says Juliet is cognitively aware, pleasant, bright, and funny. She derives joy from life and supplies it to others.
Deborah Teixeira has cared for her daughter full-time for two decades now, but says the Illinois Department of Rehabilitation Services is threatening to replace her with a state worker.
The trouble began when the state implemented a call-in system that requires caregivers to clock in and clock out over a nine-hour period each day in order to receive the financial benefits from the DRS.
Deborah said she calls in every morning, and is required to call again exactly nine hours later, with a very small window of time in which to make the call and end the clock for that day.
“The system is really set up to fail” Teixeira said. “I can’t understand how they can strap people like me to a time clock, punching in and punching out. We [caregivers] live our lives and do our jobs 24-7.”
After a couple missteps with the system, including one where the state admitted their own fault, she was threatened to be replaced with a worker from the agency if the problems persisted.
“I laughed at first, because I thought she was joking,” Teixeira said. “I said ‘Seriously? You must be kidding.’ She said she was serious and that the department was already doing it in other cases. I felt threatened right away. The lady told me three mistakes and I was out. That a state worker would be sent to my home to replace me and care for my daughter.”
These “mistakes” came when twice Teixeira failed to call and clock out precisely nine hours after clocking in. But Teixeira says the rules are unclear about when the hours must be allotted.
“Does that sound like a felony?” she asked. “Like I’m trying to steal money from the government? It was shocking to hear her suggest that because I didn’t clock in at exactly the right time, I would be replaced.”
Teixeira made it clear that it wasn’t even an issue of attempting to earn more than nine hours of pay a day, but that it was inconvenient or impossible to call at the right moment every day.
“Sometimes I’m cooking, or helping Juliet bathe, or we get busy and I forget. It could be any number of things. It certainly isn’t fraud,” she said. “As hard as people like me try to follow the time perfectly, it’s rarely going to be perfect because we’re human beings. We have clocks in every room of the house with alarms set so I don’t miss the window to call. They act like we work in a factory – punch in, punch out, leave. But that’s not the nature of our job.”
The Department of Human Services oversees the Rehabilitation Services division, and released a press statement announcing the new call system in May, calling the system “the most stringent timekeeping system in the program’s history.”
Tom Green is the communications director at the Department of Human Services, and says it’s true a memo was sent out to home caretakers, but they had a very specific purpose.
“These warnings were intended for people who were obviously trying to game to system, to get more money for more hours than their assessment determined they should,” Green said. “The whole purpose is to try and reduce fraud, not replace working mothers.”
The issues weren’t restricted to problems with the call system, however.
The case manager for the Teixeira family told Deborah that “under no circumstances” was she to take Juliet out of her home during the nine hours in which she’s being paid to work, that the terms of the service agreement stipulated she must stay inside. A trip to the park, the grocery store, or the movies would be a violation of the program.
She was told more than once “you cannot remove your daughter from your home.”
Teixeira contested this, and said she was originally told she was allowed to take Juliet out for a maximum of two hours a day. Even that amount is too little, Teixeira said, as it’s hard to make a trip to the doctor or dentist or across town and back in that time, especially as it’s sometimes slow going due to her special needs.
“I provide a home to my daughter. She has family, she has friends. We want her to have her life, not be imprisoned in her home,” Teixeira said.
“A case manager came out and assessed the presumed needs of our situation, and determined how much time I was allowed for cooking, for laundry, etc. They are micromanaging our whole lives. It is ridiculous.”
She also said the time allotted for the various activities in the service plan added up to 10 and 1/2 hours, but when she attempted to log that time in the system, she received a call warning her to keep her hours at nine a day, or else.
All of this Teixeira must navigate in order to receive a modest stipend from the Brain Injury Waiver Fund, a federal fund to help subsidize the home care necessary for special situations like Juliet’s.
Out of that stipend comes mandatory union dues, to which Teixeira objects and fellow Illinoisan, mother, and home caretaker Pam Harris is contesting in the U.S. Supreme Court. A decision on the case is expected to be announced Monday.
“That money is there for the people with the disability, not for the union,” Teixeira stated.
Patrick Semmens is the vice president of public information at the National Right to Work Foundation, and says it’s no surprise the state is making it difficult for those parents in the program who want to remain free of union dues and work rules.
Semmens drew a distinction between employees of Illinois and the caretakers in this program.
“These are not state employees,” Semmens noted. “They’re parents taking care of their own kids in their own homes. These people are already being forced to pay union dues, and the union agreed to this system which is clearly detrimental to parents and their children.”
The Rehabilitation Services division of the Illinois Department of Human Services has not return calls for comment.