Speaking up for Special Needs: Are parents of kids with special needs getting the support they need?

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MILWAUKEE —  A FOX 6 Investigation has found that children with disabilities are dying from abuse and neglect in Wisconsin at an alarming rate. Many parents are prosecuted. Others end up killing themselves after they hurt their disabled children.

“The thing that I think has been missing is this whole need to support parents of children with disabilities and get them access to crisis supports when they need them and before these really, really egregious things occur," said Lisa Pugh, public policy director for Disability Rights Wisconsin.

Pugh says there's a real question about whether Wisconsin parents are getting the help they need to take care of themselves and their families.

“I think we put up a lot of road blocks and there are thousands of parents who are waiting for very basic supports," Pugh said. "There are referrals to supports that are not being made.”

FOX6 News spoke to multiple families who have experienced these road blocks, like the Cerretti family in Kenosha.

When you first meet Kyle Cerretti, he's like any other 17-year-old boy. But as his mom Mary will tell you, it hasn't always been an easy road.

"He couldn't talk," she said. "Many kids on the spectrum couldn't talk. But what bothered me is that he didn't understand a word of spoken language," Cerretti said.

Kyle Cerretti was diagnosed with autism when he was 18 months old.

cerretti mom

Mary Cerretti has been advocating for her disabled son since he was 18 months old.

"Every day I think I woke up thinking 'today's the day he's going to talk and then everything's gonna be OK,'" Mary Cerretti said.

Kyle Cerretti's parents found a therapy program called Tomatis that would change their lives -- and his.

At first, the therapy, which Kenosha County helped pay for, worked.

At age nine, Kyle Cerretti finally started talking. But as he got older, his behavior got worse.

"Things got really out of control," Mary Cerretti said.

cerretti son 3

Kyle Cerretti, who has autism, has been accepted to college after Tomatis therapy changed his life.

When Kyle threatened to kill his mom and sister with a butcher knife, the family begged Kenosha County officials for help.

"I told them, 'one of us is going to go to jail, and it is going to be a matter of who strikes who first,'" Mary Cerretti  said.

Kenosha County officials told the family there was nothing they could do, and encouraged Mary to have her son arrested.

"I told them, 'I'm not calling the cops on him. He doesn't need to be arrested. He needs help. We need to help him,'" Mary Cerretti said.

That's when Kyle's parents decided he needed to go back to the special therapy. But the family couldn't afford it anymore and the county wouldn't pay again, calling it experimental.

"It is the worst imaginable when you are on your own trying to figure out how to help your child," Cerretti said. "And you are supposed to have these supports in place to help you get through these times, and they just wash their hands of you."

It's a frustration shared by a lot of parents who have children with disabilities.

"Anybody who has not walked in our shoes, they don't understand," says Rebecca Underwood.

underwood

Rebecca Underwood, parent of a severely disabled child, says there should be more options for families.

Underwood's son Aaron, almost 36, is severely disabled and lives full-time at the Central Wisconsin Center in Madison.

“He has no purposeful voluntary movement. Where you place him, how you position him, you go back 15 minutes or 15 hours and he’ll be in that same position," Underwood says.

His parents cared for him at home until he was four years old.

“We wanted a better life for our son than we were giving him," she says. "The care he needed was beyond our capacity.”

Because her son requires around the clock care, she says she understands how parents can reach their breaking point, especially when they don't have enough help.

"I've talked to a number of mothers who say, 'yeah, I've had dark thoughts,'" Underwood said.

Those dark thoughts can sometimes lead to dark actions.

In January 2014, a mom in Green Bay murdered her son who had autism before killing herself. In July 2015 in Dane County, a dad murdered his 16-year-old son with Angelman Syndrome, before killing himself.

"When we read reports like that, the question is 'has this parent asked for and received the necessary supports to help them to parent this child with a disability?'" says Pugh.

When six-year-old Raul Espinosa, a boy with autism, ran out of his Milwaukee home last year and got hit by a bus, officials with the Milwaukee County Bureau of Child Welfare knew he had a history of unlocking the door and running away.

"There had been repeated reports of this child wandering," Pugh says.

His family could have asked for the county to pay for a special lock on the door or for a fence, but even then, Disability Rights Wisconsin officials say there are no guarantees.

"Parents request those very basic supports to keep their kids safe and it's denied, denied, denied -- and they don't get the supports they need," Pugh said.

"There aren't options. There aren't enough options. There aren't the right options," Underwood says.

And even when there are options, it can take years for families to get the help they need.

"I think we put up a lot of road blocks," Pugh says.

In Wisconsin, more than 2,000 children with disabilities are waiting for services (which is nearly one in three eligible kids). While they wait, families suffer.

"Children can't wait for services," says Geri Lyday, administrator of the Disability Services Division for Milwaukee County.

Milwaukee County

Milwaukee County's Disability Services Division answered 25,000 phone calls in 2014 from families needing assistance.

Last year in Milwaukee County, officials with the Disability Services Division answered more than 25,000 phone calls from families needing assistance. County officials say they've made a real effort to make sure families don't have to wait for help.

"It's about connecting families. Making sure the families have the information, access to services, how they learn about what's available to them," Lyday says.

Multiple families, who wanted to remain anonymous, talked to FOX6 News about being denied services in Milwaukee County. None of them were willing to do an on-camera interview, though, saying they fear retribution from the county.

"I’d like to believe that if anyone had an issue, that they would feel free to call, call me, call us, and that we in no way would do anything that would impede or hamper someone from getting services," Lyday said. “That’s why we’re here. We’re here to provide service. We want to make sure families have what they need."

But even when families know that help is available that doesn't always mean they can get it.

"That is the worst part of the whole thing is knowing you can do something to help this child and you are choosing not to," Cerretti says.

When Kenosha County refused to pay for Kyle Cerretti's therapy, his parents, who had divorced, ended up getting re-married.

"You have a child with a disability. You are struggling financially," Mary Cerretti said.

With two incomes again, they managed to save enough to get him the treatment he needed. But they know other families haven't been so lucky.

"What do we need to do to keep a child safe? That is what it should come down to," she said.

If you're a parent who is looking for more help or you want more information on what services might be available for your family, contact Disability Rights Wisconsin.

Another resource is Snappin' Ministries. Snappin' can help connect families to a larger consortium of faith-based/church-based ministries that try to fill in the gaps left by state programs.

If you live in Milwaukee County, you can visit this website for help. You can also call 414-289-6799. If you need assistance taking care of your child, the following organizations provide help for families with young children:

  • Vision Forward
  • Center for Communication, Hearing and Deafness
  • Curative Care Network
  • Curative Care Network (Screening and Evaluation)
  • Easter Seals
  • Lutheran Social Services
  • Milwaukee Center for Independence
  • Penfield Children’s Center
  • Francis Children’s Center

If you are a mandated reporter or teacher, looking to better protect your students from abuse and neglect, this Meetup group has been formed.

2 comments

  • Lisa Brady

    First of all, they are NOT “autistic kids.” Would you appear on TV saying things like “cancer kids” or “down syndrome kids?” I highly doubt it; I know I’ve never heard it, and I surmise the reason to be your realization that “cancer kids” etc are more than their diagnosis, their disease, their syndrome. They are, just like we are, a sum of our parts, and a part of them happens to be autism; they are children WITH autism.

    Secondly, the next time you want to call yourself an “investigative” reporter, perhaps you should ask yourself if you have really investigated enough? Is your story complete? Do you have all the facts? Do the people with fancy titles you chose to interview actually live up to the demands and responsibilities of their position, or are they just going on camera telling the public what they want us to believe about them?

    Those with opposing viewpoints are “afraid of retribution,” yet you have no problem allowing whom I consider to be the biggest perpetrator of the lies and corruption coming out of MDS on tv. “We want to make sure families have what they need.” Ha, yeah, I’m so sure of it. How does she sleep at night?!

    PS. You can put my name all over this if you want. I’m not concerned with retribution; I have nothing to take.

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