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WI mother of autistic child: ‘The system doesn’t work’

By   /   April 9, 2013  /   7 Comments

By Ryan Ekvall | Wisconsin Reporter

MADISON – This is the choice Susan Giaimo says she faced:  Risk upwards of $30,000 for a due process hearing or leave her autistic child in a school that she felt was failing her son.

With the odds of winning the hearing favoring the Wauwatosa School District, Giaimo decided she couldn’t afford the expense of fighting for a federally granted right – a free, appropriate public education under the Individuals with Disabilities Education Act, or IDEA, as the act is called.

“We’ve tried to work within the system to get the district to follow the law,” she explained, frustrated by the lack of support she feels the district has provided over the last seven years. “We worked within the system, and the system doesn’t work.”

Under IDEA, the school district develops an Individualized Education Plan, or an IEP, and a curriculum that is geared toward the student’s learning ability. If educational progress isn’t made, the parent can go through an appeals process, which in some cases allows the child to move to another school, including a private school, at the expense of the resident school district.

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Susan Giaimo, a supporter of proposed special needs vouchers, is fighting for the education of her autistic son.

Giaimo said it took five years of battling with school officials to get an appropriate curriculum for her now-13-year-old son, who is autistic and non-verbal. Even then, she claims the curriculum was only followed for a year before being abandoned and that teachers and staff don’t understand her son’s autism.

“All of these rights under the special education law, those are rights on paper, but if they’re not followed and they’re not implemented, what good are they?” Giaimo said.

Giaimo, a professor at Marquette University, is now speaking out in favor of a controversial provision in Gov. Scott Walker’s budget proposal that would allow parents of special needs students to move their children to other public or private schools. Walker’s plan would allow vouchers for up to 5 percent of special education students in the state.

Giaimo says she temporarily pulled her son from school and filed a complaint with the state Department of Public Instruction, a formal process that hasn’t been resolved. She’s put her home up for sale and is looking at school districts she thinks can better accommodate her son.

“If the scholarship proposal went through, we’d be able to change schools without having to move,” she said.

The Wauwatosa middle school Giaimo’s son attends declined to comment as a matter of policy and student confidentiality.

Closed enrollment?

Giaimo’s not the only one frustrated with the current special education system.

In 2010, 81 complaints were filed with DPI related to special education. In 2011, 54 complaints were filed. And in 2012, 60 complaints were filed, according to DPI’s website.

Another 71 cases last year were brought to a separate mediation and dispute resolution process outside DPI, down from about 100 cases each of the previous two years.

DPI spokesman Patrick Gasper did not return several requests for information.

According to a Legislative Audit Bureau report, 3,235 special needs students switched districts through open enrollment in 2011, 9.4 percent of all students who participate in the open enrollment program.

But school districts don’t have to accept open enrollment applicants, a charge that’s also levied against private voucher schools. And resident school districts don’t have to allow the student to leave.

That’s a fact disability rights advocates are trying to change.

“We are looking at ways to make the open enrollment law more usable for kids with special needs,” said Monica Murphy, managing attorney for schools and civil rights at Disability Rights Wisconsin’s Milwaukee office. “They are covered under it, but there’s a lot of difficulty. It’s not quite as available for kids with special needs as regular kids.”

Disability Rights Wisconsin provides legal services and advocacy for people with disabilities. As an organization, Disability Rights Wisconsin opposes the voucher for special needs students.

Murphy cited the transfer of resources from public special education classrooms, concern with private school accountability and a loss of rights under IDEA for a student who has transferred to private school.

“We understand parents’ frustrations and they feel they might be able to find better resources for their kids,” she said. “We don’t oppose that. We feel like they’re going to be giving up a lot of their rights.”

According to the latest data available from the U.S. Office of Special Education Programs, 1,678 special education students were enrolled in private schools in Wisconsin as of fall 2011.

Nine other states have special needs voucher programs and others, such as Texas and New York, have introduced similar legislation. In each state, enrollment in the programs has increased since implementation.

Still, some parents of children with disabilities are skeptical of the program.

Florida’s McKay Scholarship Program, the first special needs voucher program in the nation, came under fire for fraud and abuse in 2011 after a Miami New Times exposé.

“What it all comes down to is a request that these vouchers need to come out of the state budget,” said Joanne Juhnke, of Stop Special Needs Vouchers, herself a Wisconsin parent of a special needs student.

Juhnke cites the same opposition to the proposal as Disability Rights Wisconsin – accountability, public school resources and loss of IDEA rights. She contends that on such a large policy shift, the legislation should go through the normal committee hearings and legislative debate, not dropped into the budget.

“What has happened when it goes in budget is it’s a very small piece of a very large document. We are denied a right to a public hearing on this. Passionate people on both sides of the issue deserve to more thoroughly explore the pitfalls and explanation of the proposal,” she said.

A similar piece of legislation passed the Assembly last session, but failed to move in the Senate.

Proponents of the special needs voucher, like Giaimo, say they’ve waited long enough.

“I can understand concerns about accountability,” Giaimo said, but added that there are accountability measures in this law. “For the kids who the school district is failing, there’s just not much you can do about it. I don’t know why these kids aren’t worth fighting for.”

Dani Rossa, a parent with two autistic children in Milwaukee Public Schools, testified with Giaimo last week at the Joint Committee on Finance’s first public hearing on the budget at Greendale High School in Milwaukee County.

“I find it ironic that advocates who are against this scholarship because they believe I would be giving up accountability if I choose to send my children to a private school could not help me hold my public school accountable for implementing an IEP. If that had happened, there would be no reason for me to be here,” she told the committee.

Rossa, too, says she is forced to consider moving out of state.

“It’s because of this dead end that my children are on a waiting list for an out-of-state school. We’re applying for jobs that would require us to sell our home and move to a state where we have no family and no friends,” she said.

Giaimo said she just wants what’s best for her son, and he’s not getting it at his current public school.

“We want him to have a reading program and delivered in instruction manner that works for him. He’s supposed to have interaction with peers. That hasn’t been followed. This whole past school year, the IEP has not been followed,” Giaimo said.

She describes her son as “pretty social” outside of school. He’s developed sign language skills and is in a local Boy Scout group. Giaimo says he’s gone on overnight camping trips, does gymnastics, likes to swim and go sailing.

For his birthday, his parents brought him and his therapist to a Neil Young concert in Chicago. Giaimo said the teen loves Neil Young.

She thinks her son will always need some kind of supervision, but she knows he can learn – given the right opportunities.

“We know he can learn, he does it in his home program,” she said. At home, he receives five to seven hours a week of “rigorous” Applied Behavior Analysis training, a technique used to treat autism that he doesn’t receive at school.

“With five to seven hours a week of that, he makes measurable progress. When we look at the school environment, it’s nothing,” she said.

“I think people are well meaning and kind. But the problem with public schools is they’re trained to be generalists and trained to work with a whole variety of disabilities. Autism is different,” Giaimo said. “They’re all different, with different abilities and range of severity. They underestimate him because they don’t know how to treat them and they don’t get proper guidance and training from higher up.”

Contact Ekvall at Ekvall@wisconsinreporter.com

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Ryan Ekvall

  • Rhiannon

    We live in Cudahy, Wisconsin and my son was put into a school in our district after being in the birth to three program. He did great his teachers were great with him and they would work with him and he was very happy there. In 4k I had to fight to keep him there because he was suppose to go his neighborhood school. Then this year I tried fight again but they would not let him continue at the school that did so much for our son. So we went to the school in our boundary area, well we noticed a change in our son. I found out the first three days of school he didn’t use the bathroom at all because it was unfamiliar to him and his teacher knew this and didn’t ask me about it or think to take him. They were not following his IEP I had meetings with them my son still seemed to be declining. During winter break we decided to pull him from school to home school, it was the best decision we made. My son is a totally different kid now he is so happy and so much more connected. We are lucky we have the ability to home school so many families don’t have that option. All schools and teachers are not created equal, the school where we had all the problems said they understood autism but by what they showed us they didn’t at all, and the school district is not any better we want what is best for our son they want what is easiest for them.

  • M.D. Kittle

    Thank you for sharing your story.

  • mom

    What people don’t understand is the excessive cost that goes along with educating special needs children. I’m not saying that it’s not worth it, but being the parent of “normal” kids, I see the disruption and loss of teaching time that my child receives when special needs kids are integrated into classroom settings that do not work. How is it right that 28 other students in the classroom are distracted and are not learning because of 1 special needs student? Something does need to be done to address these situations, but not at the expense of the classroom and the “normal” kids.

  • http://www.facebook.com/patrick.r.schuppe Patrick R. Schuppe

    theres a new book covering this mess of 2 yrs. ago.

  • Joyce. S

    Your an ASS!!!!!!!! I don’t why people think you own the class rooms. I have three boys that have special needs and one as Asperger’s that is a high form of Autism with OCD and very bad anxiety and he just had his Graduation also got a cord for his GPA. He was in a what you want to call a so call “normal” class. and FYI his class work was not changed for him. he did the same work that the “normal” kids were doing. I also have a son that is in both special needs and so call “normal” and he does great with both class oh and he as mild Autism and other disorders. My other son Tourette Syndrome, anxiety, and OCD also behavior disorders and he is in a what you call “normal” class. I’m sorry you fell my kids and your kids shouldn’t be in the same class room, but special needs are not going any where. Also FYI some special needs don’t show any signs in tell the age of 10 or older. Also you can come down sick or hit your head and then have some kind of special needs. So don’t count out the kids with special needs kids can learn from each other when they are in a class room working together.

  • Guest

    If the reporter of this article wish to reach out to me I would love to share my story involving my 6 yr son who has Autism, and was abuse at his school by his Aid, His I.E.P was not adhered to. I have been getting nothing but a huge run around.

  • Tina Jones

    Our 10 year old son has a IEP last school year I found out on May 10th, 2013 that was abused by the Vice Principle at Sullivan Elementary in Green Bay WI.I pulled him and his twin sister from the School and transferred them to Nicolet Elementary.
    Vice Principle Brinkman called Police without my knowledge at least 3 times. He never informed the officers that he was Autistic or special needs. I was never contacted. In one of these incidents he let the police restrain him in handcuffs during a meltdown. My son’s has a IEP and what was done by Mr. Brinkman was criminal.
    During a field trip to the museum there was a incident where he picked up a ax after being told that they could touch the tools but not the ax. Of course when they seen him touch it they told him to put it down and he did. They never called me I found out from his twin sister that the Vice Principle was called and he picked him up brought him back to school. During this incident he grabbed the collar of my sons shirt because he didn’t want to leave the trip and pulled it. In my child’s eyes due to his autism he said he was chocked.I was never called or notified!!!
    Mr Brinkman told him that he was bad, he was going to go to jail and get locked away. That he was going to make him wear a cow collar with a bell so they knew where he was!!
    My son is no longer the child I used to know and the Dean of Students at Nicolet who used to be at Sullivan even told me that he is not the same child!! In 8 months this man has changed my child and my family I cry daily he won’t stay in School and threatens to kill him self!!!
    The School District will no Longer talk to me and they have passed the buck and lied straight faced to me. I have repeatedly asked for the records of the investigation. Under WI Open Records Law I Hunters Mother should have access to them. I am starting to believe there was no investigation and I also learned they took him out of Sullivan and promoted him to principle at another school. I am sickened and appalled!!
    I want accountability for the damage he has caused my son and to our whole family.