Michigan mother says state has abandoned adult daughter with severe autism

A Michigan mother is speaking out after she says the state has abandoned her adult daughter who suffers from severe autism.

  • The mother cannot find in-state help for her daughter with severe autism.
  • The state of Michigan pulled her daughter's benefits until a lawyer got involved.
  • The mother is waiting for a letter from the state of Michigan that says she cannot get help in-state and is allowed to seek benefits from out of state.

Cyndi Sibley is sharing her family's story because she not only needs help, but believes there are many families of autistic children going through the same thing in Michigan.

Cyndi's daughter, Jackie, is severely autistic. Now at 20 years old, the Sibley family says the state of Michigan has abandoned them.

Also see: Metro Detroit family battles to keep adopted son with violent history in psychiatric hospital

"She was our first child," Cyndi said. "I had remembered her saying some words and then she had stopped saying words. So around the age of two we noticed a difference and we had her tested, thinking she may have a hearing problem, but it ended up being autism."

As Jackie got older, she needed more and more help. Cyndi said her child became bigger and more violent and was classified as 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 said.

The family tried sending Jackie to school. 

"I was being called to pick her up because she was having severe upsets at school. Bleeding with lacerations to herself," Cyndi said. She says state workers assigned to her case were not able to adequately control her daughter.

"It takes experienced people. And it's very scary for somebody to walk in and to see these kinds of behaviors. I was left alone to handle it because there was no help," Cyndi said. "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."

Cyndi continued to try by herself to care for her daughter, 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 driving on the freeway," Cyndi said. "At least this allowed me enough time to pull over until she would calm down."

Cyndi said she was given a list of providers to contact for help. All 62 of them didn't accept Jackie at her level of autism. She started to look out of state for help and finally picked one.

"Michigan will not back be on that. They do not want us taking her out of state to another facility," Cyndi said. "The state is recommending that she gets put into a psychiatric ward."

Cyndi says the state pulled Jackie's Medicaid benefits after the out of state move. Michigan State Senator Peter Lucido found out about the case and is not happy.

"She's a taxpayer, a mother and father, Jackie has a need and we're supposed to meet the expectation of need," Lucido said.

After lawyers sent a letter to the Michigan Department of Health and Human Services, the family was told Jackie's benefits would be reinstated.

The Sibley's said the state and Oakland Community Health Network has denied out of state placement and funding for Jackie, despite there being no services available in Michigan.

"The county owes her and her family a letter, to indicate that there is no facility, and they're holding back on that," Lucido said. "The county of Oakland must be held accountable to do their job as any other mental health department in the state."

The Sibley family is pushing for an answer, as they have found a facility with an opening that will accept their daughter in a different state and give her the care they say she needs, but they're waiting on that letter from the state.

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