Mother says state abandoned adult daughter with severe autism
Cyndi Sibley, the mother of a woman with autism, is sharing her family's story because she believes there are many others with autistic children going through something similiar to what hers has experienced.
Her daughter Jackie has severe autism and now that Jackie is 20 years old the Sibley family said the state of Michigan has abandoned them.
"I had remembered her saying some words and then she had stopped saying words. So around the age of 2 we noticed a difference and we had her tested," Cyndi Sibley said, recalling how her daughter came to be diagnosed with autism.
As Jackie got older she required more and more help. Sibley said her child grew more violent and was classified severely autistic.
"A lot of times she would fall on the ground until her knees would bruise and become bloody, because she was just almost craving the input," Cyndi Sibley said.
When they tried to send Jackie to school, Sibley said, the workers assigned to her case were not able to adequately control Jackie.
"I was being called to pick her up because she was having severe upsets at school, and bleeding and lacerations to herself," Sibley said. "I was left alone to handle it because there was no help."
"I mean the kids who are on the spectrum, there is a lot of services out there. It's the ones that reach this point of severity that there's a huge lack of any kind of services."
Sibley tried to care for her daughter alone, but it was challenging.
"Driving, I ended up getting a cage behind the front seat of our car, because if she became upset, she would go after me while driving on the freeway," Sibley said. "At least this allowed me enough time to pull over and, until she could calm down."
"I think when you reach this level of severity, you need professional people there. You need some kind of program that knows how to deal with this."
Sibley said she was given a list of providers to contact but none of the ones on the list would accept her daughter.
She tried to find an out of state facility to help her child but faced a roadblock.
"Well Michigan will not back me on that. They do not want us taking her out of state to another facility," Sibley said. "The state is recommending that she gets put into a psychiatric ward, here in Michigan."
When Sibley wouldn't comply, the state of Michigan pulled Jackie's medicaid benefits.
She said the state sent her a letter, saying that the reason "your Medicaid waiver is no longer available, is because your daughter is currently out of state."
"They ended up sending me a letter, saying that your medicaid waiver is no longer available, is because your daughter is currently out of state."
State Sen. Peter Lucido is not pleased with what happened in this situation.
"If you don't have a facility for her here in the state, it's a mandate that you must find a facility out of state," Lucido said. "She's a taxpayer, the mother and father, Jackie has a need, and we're supposed to meet the expectation of the need."
Once the family hired an attorney they received a letter stating that the Michigan Department of Health and Human Services reinstated Jackie's medicaid retroactively.
The Sibley family says the state and Oakland Community Health Network has denied the out-of-state placement and funding for Jackie despite there being no services available in Michigan.
Local 4 contacted MDHHS and was told officials could not comment on this case.
The Sibleys are pushing for an answer as they have found a facility with an opening that will accept Jackie in a different state and give her the care the family said she needs. However, they need a letter from the state acknowledging there are no facilities here for Jackie.
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