It’s Friday afternoon at Sjany de Groot’s home for medically fragile babies and children, and 13-year-old Xander is peering into a large tank, watching fish flit back and forth.
“He feeds them five times a day,” de Groot confided.
Earlier during an interview at the San Luis Obispo home, Xander, who has a brittle bone disease, moved his wheelchair around the house and laughed with delight as some of the caregivers showered him with hugs and kisses.
“They said something about us not giving him enough attention,” de Groot said. “Everyone gives him attention.”
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De Groot was referring to a state inspection that happened earlier this summer and resulted in a nearly 100-page report with numerous infractions. She was given an additional 60 days to respond and now has until Sept. 30 to do so. If she does not respond, it could put de Groot’s funding and operation in jeopardy.
But some of the infractions, de Groot said, may be impossible to comply with: Adding walls to provide privacy between rooms that are now open, ensuring every child has a closet, installing a ventilation system, and making sure that every bed is next to an outside wall.
The report also appeared to take issue with the way de Groot and her staff feed, bathe and interact with the children. Seven people work there, including de Groot, a registered nurse. The facility is licensed for 15 children.
De Groot shared some information from the report, but a copy was not available from the California Department of Public Health on Friday. A spokesman for the department said it would be redacted and sent next week.
The department’s website lists numerous deficiencies from past inspections, but information on those cases and their final outcomes was not available Friday.
De Groot must submit “an acceptable plan of correction” by Sept. 30, according to the state agency.
“The facility needs to be in substantial compliance with the state requirement and federal conditions of participation before the termination date,” the department said in an email.
“They looked at our facility like a hospital and really took it out of context,” said Blair Gracey, a certified nursing assistant who has worked there a year.
Assemblyman Katcho Achadjian, R-San Luis Obispo, said he’s been in contact with de Groot since she received an initial letter from the state Public Health Department. “Our goal is to work with the department to ensure that the de Groots can continue to operate their facility and care for the children it currently serves,” Achadjian said in an email. “I will continue to work with all those involved to see if we can come up with a workable solution.”
San Luis Obispo attorney Paul Phillips, who is working with de Groot to respond to the state, said she’s trying to comply, but “only time will tell if she’s able to comply … to the satisfaction of the regulatory body.”
“That’s when the question comes — does one need to make exceptions?” Phillips said. “Does one need to have them comply meaningfully but not exactly?
“She’s an inspiration,” he added. “You have a segment out there, but for her and her dedication, where else would they get the service?”
De Groot, who turns 87 in October, has faced several regulatory issues since she and her late husband opened their Buchon Street home to children with special needs in the early 1980s. Her daughter also works there.
In 2001, de Groot was ordered by a judge to repay $180,695 in Medi-Cal reimbursements because one of her patients had been getting Medi-Cal in addition to money from a lawsuit settlement. The California Department of Health Services said de Groot was essentially double billing.
De Groot cares for five children now, ranging from 2 to 16 years old, and is the legal guardian of three of them, including a 10-year-old girl who was nearly suffocated as a baby and can’t move on her own. A painting on the wall near the girl’s bed reads: “It matters not how long I live, but how.”
“I love my kids and I love my home,” de Groot said. “They want me out. They want me to say, ‘Sjany gave up.’ I’m not giving up.”