A Parent’s Right to Represent a Child: Getting the best autism education
February 25, 2007 by Kristina Chew, PhD
Filed under Health
Whatever your position on what causes autism or what treatment you think is best, there are some experiences that most parents of autistic children go through and that are just not easy: Getting the diagnosis and just hearing the word “autism” for the first time. Dealing with the attention (stares) of strangers when one’s child is having an unhappy moment in a public place (even just on the sidewalk in front of your own house). And, dealing with the school district to ensure that one’s child gets their free and appropriate education (FAPE) in the least restricted environment (LRE).
My husband Jim and I are both educators—he is a professor of American history and religion at Fordham University in New York City and I am an assistant professor of Classics at Saint Peter’s College in Jersey City, which is in northern New Jersey. We have always felt that our sympathies rest very much with those in the education field, whatever age of students or subject matter under question. I teach college students Latin, ancient Greek, and classical civilization, literature, and history—I am currently teaching a class about Roman law, politics and society. And while I can tell you a few things about the notions of patria potestas (the legal power of the father over a Roman household) and the “freedoms” allotted to different strata of Roman society, I can tell you that when it comes to representing Charlie’s educational needs before the Child Study Team in an IEP meeting, I would have liked to have had some formal legal training.
A case that will be argued before the Supreme Court on Tuesday highlights the efforts that parents of autistic children go through to get their child the right kind of education. As reported in today’s Plain Dealer, Jeff and Sandee Winkelman are in a “war” with the Parma School District (Ohio) over their nine-year-old autistic son Jacob’s educational needs. While exactly what sort of education Jacob needs is at the heart of the Winkelmans’ dispute with the school district, the case that the Supreme Court will hear is “whether parents of disabled children like the Winkelmans, who aren’t lawyers, can go to court without a lawyer to challenge schools’ plans for educating their children.” The Winkelmans argue for the importance of this issue due to many parents of disabled children not always being able to hire a lawyer to represent them, or to find a lawyer who can assist them for free.
According to Sandee Winkelman, the family’s income is below $50,000. Jeff Winkelman works as a dialysis nurse and the Winkelmans have four children, two of whom are autistic. Attorneys for the Parma School District are arguing that children could “suffer” without the legal representation of a lawyer, and also that, if parents untrained in legal matters file numerous legal disputes against their school districts, this would increase “‘exponentially the cost to school districts who are then forced to respond and defend against all these motions,’” as Christina Henagen Peer, an attorney at Squire, Sanders & Dempsey who represents the Parma schools, is quoted as saying.
Sandee Winkelman rather notes that the family has “‘just been ruined’” financially from all of their efforts to provide their son with the education he needs. A California attorney, Jean-Claude Andre, is voluntarily representing the Winkelmans before the Supreme Court:
Attorneys for Parma dispute the assertion by Andre and the Bush administration that Congress intended to give parents the right to go to court on their own in special-education cases.
They point out that when Congress rewrote the special-education law in 2004, the Senate included a provision spelling out such a right for parents. But the final bill omitted the provision. That omission, Parma maintains, proves that Congress didn’t intend to give parents the right.
The court is expected to rule by July. But for Parma and the Winkelmans, the battle will go on. Even if they win, the Winkelmans will face the challenge of getting a court to overturn Parma’s plan for their son’s kindergarten year.
They also are appealing Parma’s plans for his education in subsequent years.
The Winkelmans’ son, Jacob, is the same age as my own son, Charlie and while I have not met Jacob or his parents, some of Jacob’s educational needs much recall those of Charlie—and the one thing that has helped Charlie the most is being in the right school setting (and our efforts to find Charlie the right school and then get him into it have been a constant topic on my blog Autismland):
At the heart of the case is Jacob, a boy with moderate to severe autism who won’t be in court Tuesday, his mother says, because she can’t be sure he would sit still. She says Jacob has a short attention span, a tendency to be disruptive and difficulty grasping why he needs to learn basic social and academic skills that come easily to most children.
Jacob has learned to speak in sentences and to read at a first- grade level thanks to a private autism school, the Monarch School, in Shaker Heights, Ohio. Jacob has been a student on and off for the past few years, depending on whether or not his parents have been able to pay the tuition, which is over $60,000 a year. The Parma Schools refused to pay the tuition for Jacob and argued that he should be in their own school program, where (the district said) he could get the special education services he needed and also the “advantage of interacting with children who aren’t disabled”; the Winkelmans have argued that the school district’s plan calls for too little speech therapy and one-on-one instruction for Jacob. (The Winkelmans have been “pleased” with the education that their other autistic child has gotten from the Parma public schools.)
Again, I do not know the Winkelmans and I have not met Jacob. But much in their experience in dealing with the school district about the right kind of education for their autistic son strikes more than a few familiar notes with what we have gone through for our son, and especially in regard to the disputes about a private school placement in which there is no interaction with non-autistic children, vs. a public school setting that is not specifically geared to meet the needs of an autistic child. On paper, it can sound like a public school placement is “better”—because of what are supposed to be opportunities for social interaction with typical children and for mainstreaming, for a school environment that is “less restrictive.” This kind of setting can indeed be the right kind of setting for a child, based on their educational needs and abilities.
However, in figuring out the right kind of school placement for Charlie, I have found that, language like “social interactions” and “opportunities for mainstreaming” sound good—-sound as if (for example) a school district is suggesting that a child can “do more” (be “higher-functioning”). In the case of my son Charlie, some of these phrases have become buzzwords for a watered-down education in a public school system that simply does not have the staff and resources to address his needs. Of course my son needs social interactions with non-autistic children but what he needs to do first and foremost in school is learn academic subjects (reading, writing, arithmetic) and also the prerequisite skills for learning thos subjects (these would include, for example, his language and communication abilities and his ability to pay attention and listen to instructions). He needs to be taught with specialized teaching methods in a small classroom where he receives one-on-one instructions along with speech therapy, OT, and adapted PE that are all very carefully tailored to his needs (cognitive, sensory, etc.).
Over a year ago we were in a situation in which we knew that Charlie needed to be in a private school setting that offered all of the above and there were some discussions of a legal nature that went on between us and the school district. We were able to find a school and the district did pay for it; we then had the problem of not having a school for our son, as the private school closed after a few months. We were then fortunate to be able to find a public school program—in the town that my husband’s parents have long lived in—and to place Charlie in this. And how good he is doing, with the right kind of program—though he is not mainstreamed and does not have any direct interactions with the typical children in his school; he receives one on one instruction throughout the day. He has been off for the past week on a break from school and, by his serious look when I mention the names of his teachers, is ready to return.
It is our efforts to represent Charlie before the school district and, in many ways, to the world at large that have made it possible to get him into this school situation that has made his life good (and that has enabled Jim and me to try to return some aspects of our life that we had more or less put on hold to take care of Charlie’s needs first (the book on the New York/New Jersey waterfront that Jim has been working on ever since the time of Charlie’s autism diagnosis; my academic teaching and writing, which have been constantly rearranged or “back-burnered” so I could take care of Charlie). “Ruling will decide parental right to represent child” is the subtitle for the Plain Dealers article about the Winkelmans and the Parma School District—and it seems to me that ought to be no questions about that parental right to speak up, out and for what their child needs to learn and succeed.
I have been following this case, also.
I totally agree that a child’s primary and best advocates are their parents. And most families with special needs kids get financially “tapped out” fairly quickly.
So it is essential that parents be able to advocate for their child in court, in order to receive fair treatment.
To insinuate that we would take what little precious time we had to file frivolous lawsuits grossly misses the mark, at best.
Would like to know your further thoughts on this case too. It stood out to me that the district was mostly concerned about money.
I will be watching this case. It’s very sad, considering, they were reasonable with the other child, so I’ll assume they are not out of line in their requests. The issue of education of our kids is a huge one. My asd daughter was diagnosed in public school. We tried to get the hearing for the IEP and were blown off repeatedly! Anyone can tell me this is illegal, and of course I know it is, but then, one needs a lawyer… hence you are here, the article. I placed my daughter in a private school, and like Kristina, the school might be closing next year, so, basically, I am in the same quagmire as us all. Like everyone else (instead of fighting this court fight to get an IEP), I’ll consider (and will end up) moving to a better school district for ASD kids, and then, OMG! We have a hotspot of autistic kids! a breakout!! How sad.
Well, I am pleased to say that we are in complete agreement on this one.
On May 11, 2007 the due process hearing of Jeffrey and Sandee Winkelman, on behalf of their son with autism, ended the evidentiary phase. This hearing addressed the special education issues of their son Jacob for the 2006-2007 school year. The Winkelmans have been in litigation with the Parma City School District for a number of years regarding the free, appropriate public education which the Individuals with Disabilities Education Act requires their son to receive. The Winkelmans are involved in a lengthy court battle with the PCSD over whether a parent has a right to proceed pro se (for themselves without an attorney) in matters of the IDEA (the law addressing special education). The decision in that matter should be rendered within the next month by the U.S. Supreme Court.
In the current due process hearing, the Winkelmans are represented by attorney Andrew Cuddy, of Auburn, New York. Cuddy was admitted pro hac vice (for this particular matter) under the sponsorship of Michael J. Goldberg, a Cleveland Criminal Defense attorney, who represented the Winkelmans for the 2004-05 and 2005-06 school years. Michael welcomed the help from Cuddy and sponsored him so that he could practice law in Ohio on behalf of the Winkelman family. Cuddy is an experienced special education attorney that has recently published The Special Education Battlefield: A Guide to the Due Process Hearings and Other Tools of Effective Advocacy (available at http://www.andrewcuddybooks.com).
The current due process hearing is addressing the Winkelman’s claim for reimbursement for a private school placement of their son at the Monarch School, a state approved school designed to meet the educational needs of students with autism. PCSD claims that the school is not appropriate, and that the parents are not entitled to reimbursement. PCSD further maintains that its in-district program is appropriate to meet Jacob’s needs, despite the Districts failing special education programs according to Ohio Department of Education records.
The hearing lasted eleven days. During the hearing the Winkelmans presented testimony of three individuals that were qualified as experts by the hearing officer who testified that the PCSD program would cause irreparable harm and injury to the student. The District only presented the testimony of their staff to support the District position that the PCSD program would “allow for educational benefit.” “I believe the District staff was pressured to misrepresent information to the hearing officer, and am investigating this matter further so that it can be brought to the attention of the appropriate authorities if warranted,” said Cuddy.
Cuddy stated, “The position of the District is outrageous. Experts and the child’s physicians are telling the District that their program will cause irreparable harm to the student. For the District to insist the student attend this program is evidence of their complete disregard for the student’s well-being.” Cuddy has launched an investigation into the budgetary issues of the District, as he suspects that IDEA money that is designated for special education programming is being funneled to the School District’s attorneys. “There is no other explanation I can imagine for a District spending $1,000,000 dollars defending a program that all the experts involved in the case conclude will injure the child. If we follow the money, I believe we will find the individual for this decision-making,” Cuddy said.
When asked of his opinion regarding the case, Cuddy expressed confidence. “The burden of proof in these due process hearings is upon the parents. We presented multiple experts with advanced degrees supporting the parents’ position. Every service provider familiar with the child supported the parents’ position with their reports and testimony. The District’s defense in this matter was based on the opinions of their own staff, which certainly appeared ‘coached’ as each witness testified about hours of preparation spent with multiple school district attorneys.” Cuddy further stated, “The only way that I can imagine the hearing officer ruling against the parents is if the corruption in the District goes beyond the District and to the level of the hearing officers and the Ohio Department of Education.”
As an attorney from New York, Cuddy expressed surprise about the programs that were described by the PCSD staff. The classrooms, which were continually referred to as “units” by the PCSD staff, offered little educational instruction to the students. In the morning hours, the special education teacher only spent 15 minutes of time with each student. The remainder of the morning the student only received the attention of a classroom aide, a person unqualified to provide instruction. A similar routine was established in the afternoon, allowing for minimal time with a certified teacher. “Districts are not allowed to ‘warehouse’ special education in this manner. These children are entitled to teaching services equivalent to a regular education student. That is not happening in Parma. I am surprised that other parents are not up in arms. There was also evidence in the hearing that the Parma staff is using mechanical restraints in the classroom to control behavior of students with autism. This rises to the level of criminal conduct, in my mind, as the state’s own regulations prohibit mechanical restraints for this purpose,” Cuddy said.
The hearing also focused on the School Report Card of the Ohio Department of Education. “Parma did not pass. The District’s action plan to address their failures in special education, and complained of inadequate funds to properly train staff. It was clear during this hearing that the staff members are not properly trained, and that there are funding issues.” The two classrooms addressed in the hearing both exceeded the state limit of eight students. Cuddy is continuing to investigate the funding issues. “It seems very clear from the District’s records that money intended to pay for special education programming is being used to pay attorneys to fight providing appropriate special education programming. This is contrary to what the law allows, as it is a violation of law to use special education money to pay attorneys. This practice negatively impacts of the provision of special education services to all the students in the District.”
A decision from the impartial hearing officer, Harry Taich, Esq., is due on June 28, 2007.
If you have questions regarding this press release, please contact Andrew K. Cuddy, Esq.
(716) 868-9103
Andrew@cuddylawoffice.com
Thanks for posting this information, Mr. Cuddy.
According to CNN the parents expect taxpayers to cover the $56,000 yearly tuition for this child’s private school.
Why am I paying for this child’s education?
Public school is a charity service provided by our taxes. If they want him in a private school, they should be footing the bill themselves.
Thanks for writing in here, Justin. Parents of disabled chilren like myself sometimes must seek private placements for their children because no appropriate educational placement is provided by the school district.
I just found these posts… sad but after two years of preschool and one year of K in the public school system, my daughter had more problems from the other disabled children (like sign language, flapping, non-verbal squeals, etc.) because no one wanted to give her an extra shadow (teacher) to help her when she couldn’t do what the other children did. She also was so upset about going to school she would scream leaving me (they would literally pull her finger by finger off of me) and throw up in the mornings after breaks or weekends. I was told I was baby-ing her, that I gave my children too much attention and it was unnatural, etc. to have my children behave like this (although my older and younger didn’t have this issue). I finally took her out to homeschool because in the hours of prep, crying, deflating from school, homework, IEPs and all that, I can do everything my child needs. Replacing my income, now that is another story. And of course, my taxes still pay for a school system I don’t use or believe in.
Justin-
A lot of thought has gone into the Individuals with Disability Education Act. One of the concerns that those who developed the law was that School Districts would resist providing the services for some of these children. For that reason, the law allows the parents to place a child in a private school if the school is not meeting or able to meet their child’s needs. Unfortunately, School Districts often fail to comply with the law and provide appropriate programming for these children. This is an extremely common problem for autism spectrum children, but also very common with children with dyslexia and emotional disturbances. In the Winkelman case, the public school is offering nothing more than a babysitting service for the children in the program that they want the Winkelman child in. This program will not prepare the child for independent adult living, which is the purpose of the IDEA.
As a taxpayer too, I understand your concern. But it is more complex than you imagine. It is vitally important to provide these children with the needed services so that they can become independent adults. If they do not receive these services, it is extremely likely that children such as Jacob become institutionalized, do not hold jobs, and in other ways cost taxpayers a ton of money. Investing early in these children’s educations saves us all a great deal of money in the long run. When the IDEA was developed this community benefit was recognized.
Hope this helps you with your understanding of this complex problem. Families such as the Winkelmans need our support.
Andrew Cuddy
http://www.andrewcuddybooks.com
Summer, I have heard more than a few accounts from parents whose children were thought “too high-functioning” for a 1:1 aide—and whose children then had similarly difficult moments at school, at transitions, during classtime, etc.. Do you think you will homeschool indefinitely?
The plight of autistic children in America is more complex than we are all ready to admit. I am a physician with 4 kids. The last two are autistic. They are both going to public schools. I am convinced they are not getting the best of education. The option for a private schooling is not available in my locality.
As a physician, I still have to work double job to keep the family afloat. My wife is a foreign trained pediatrician. She has practically put her profession on hold for more than 10 yrs in order to care for our children. I am not able to offer her a whole lot of physical or emotional assistance because of the extra-ordinary demand of a double job including sleeplessness. Now anybody that works closely with me will attest to my hardwork. Unfortunately, for reasons not unconnected with the extra-ordinary needs of my family I recently lost my job. Amazingly, there is no empathy from professional colleagues that should know better.
Now with regards to comment made by one of the readers on using tax payers’ money to fund education for autistic children. If you use my family as a case study; I paid $50-60,000 to the goverment annually on tax. A good public program could have freed my wife’s time and she would have been able to practice as a physician with a potential for a tremendous benefit to the society. I worry about the impact of my children’s autism on their brother and sister. I worry about the educational needs of the unaffected children. We paid less attention to them than actually required. My brilliant first son is now suffering a failing grade….
I shiever when I hear people talking about protecting their taxes at the expense of the less privileged. The common enemies of diligent taxpayers are not the middle income earners who are laboring to keep American society moving forward. It is the corporate guys in conjuction with the government that create a system that promote begging for our right. It is a shame we need lawyers to advocate for the basic needs of children. American greatness is a function of its readiness to work as 50 United States; negligence of any of the member states will only invite anarchy in the long run. We have to be careful about the danger of individualism in this country. There are times it is more efficient for a single finger to do certain task, and there are other times it will be foolish not to use the whole hand.
Getting back to my predicament, I am currently interviewing for jobs. I will be glad if readers can suggest the best communities with the provision of excellent public and/ or private educational resources.
Thanks
Toyin
Toyin,
If I may ask—how old your two youngest? What are their main educational needs and challenges; what sorts of teaching, therapy, etc. have they so far had? New Jersey has been good for Charlie, thought services and programs (and the cost of real estate) vary from town to town.
I am with you regarding taxes—-my son’s educational needs are not a “burden” on society, but what he needs to be and do all that he can.
Justin: Did you pay at least 56k in taxes during the previous filing year? If not, then what did you pay?
Can someone tell me if one can legally sell your kidney to foster and support aba therapy. I heard about a father who did this, and he was able to get $70,000 for his kidney by selling it to a hospital in NYC. He apparently had no money for private aba therapy and did this to pay for aba for two years. He apparently works 2 jobs and has no time to help his wife with several children. I understand the aba therapy has been working wonders for his son. I thought this might be a worthwhile idea. Everyone has two kidneys, and getting cash to pay for medical expenses in this manner seems fair game. We are certainly not going to get a doctor or a pharmacutical company to give up part of their millions to help one bleeding small potatoe
@Florida Dad,
I think this is the story you’re referring to?
It seems an extreme way to pay for therapy. A number of people have commented about the idea of selling a kidney to pay for ABA; I think people have some other, not life-threatening, suggestions.