Is there any revisionary legislation that has been proposed to amend the existing law and act to protect the original purpose of the legislation? Correcting the system from being misused as a fund for services above and beyond the intended purpose of the law seems a very effective way to save money and improve education in our communities. As I read this article, it seems that in the case of Luke, the program diverts hundreds of thousands of dollars for taxpayers on a single child, yet the program offers no substantially improved "end result" that significantly improves the impact of Luke's education to the point where he can fully function and be a productive member of society. While I feel strongly for Luke and his parents, in the end, no one believes that this hugely expensive approach can "cure" him or render him able to perform at a functional level as a productive member of society. This effectively renders Luke to be destined for a life in institutions, anyway.

It seems to me that focus would be best spent on trying to study the problem and find a cure or a means to treat the condition, rather than subsidizing an ridiculously expensive private "educational daycare" program with public school funding, yet providing little, if any, improvement over his existing progress. In the end, in present interpretation, the system is being manipulated to serve the interests of a few at the greater loss to the majority of students, as Federal monies are being increasingly diminished. This is accelerating the "starving" of school districts and feeding a pool full of legal and private pseudo-educational institutions (some of which are "for profit") with dollars earmarked to help improve education for all our kids. These dollars were to be focused on providing public education services in our schools, not "sidetracked" toward grossly expensive educational experiments in private institutions.
Andrew West
Grosse Pointe Woods, MI

With 36 years experience as a special educator, I have conflicting feelings. If schools have to pay for home issues, children in regular education will suffer. Perhaps parents should pay on a sliding scale for the residential piece of the program and Medicare should fund the rest.
Rosalind Hill
Boston, MA

The debate about special education funding is too often framed, whether in theoretical or real, budgetary terms, as a conflict between students with disabilities and students without, all competing for limited education dollars. What I'd like to know: why do we isolate this issue in our schools? Have policy makers determined what the broader societal costs are of not educating students with disabilities? What can we save on social services in the long run were we to provide an adequate education in the short run? How, for example, does the cost of institutionalizing an under-educated person for the balance of his life compare to the cost of an alternative high school? State policy makers need to weigh carefully the implications of their decisions around special education in areas beyond education.
Dana Kooistra
Lawrenceville, NJ

This article is outrageous. I find it absolutely appalling. First, please understand the meaning of "people first language." The article stated many times the autistic child, autistic children. Autism is not this child. The child HAS autism, he IS NOT only autism. Second, understand the Individuals with Disabilities Education or later revised to be Individuals with Disabilities Education Improvement Act. It does state that every child is entitled to an appropriate education, which yes, means the BEST for them. Appropriate is defined by the child's IEP. Sending Luke to a boarding school was the best/APPROPRIATE choice for him, as every special education student is entitled to the best placement for them. Luke was regressing in his skills, which required full-time reinforcement. I'm sure that the school has an extended school year (ESY) which would greatly benefit Luke. Kudos to the parents for realizing what is best for Luke. Unfortunately most of the country has a lack of understanding what exactly special education entails, and a great lack for respect of others ... remember, a child IS NOT his disability.
Tabitha
Philadelphia, PA

I think the real point of the story is that the federal government has never reimbursed the states for the full cost of the law. All students deserve an appropriate education, whether GATE or special ed, Title 9 eligible or not. The federal government created a very appropriate law to ensure that students receiving special education would receive appropriate education, and then have failed to fully fund that law; and the funding ends up coming out of general education budgets at a district level. It is not fair to any student.
Debbie
San Jose, CA

I am the single parent of twin boys, age 14, that were born three months premature. Ryan is severely handicapped, Ian is not, so I can see both sides of this issue. I have experienced the insulting comments regarding "the cost of special ed" and the impact of "those kids" from teachers, parents and administrators who did not realize I also have a disabled son. Ryan has been fortunate to have had teachers that take the time to see the person beneath the disability. He has also come up against assumptions, usually wrong, about the abilities of a blind, non-verbal kid in a wheelchair — even by master-degreed professionals. Does Ryan deserve a good life and a quality education? Absolutely. Does it have to cost $100,000 a year? No. Like his brother, he needs caring teachers and professionals that will hold high expectations and expose him to experiences that will further his understanding of the world. Beyond that he also needs enough aides in the classroom, community trips and assistance with learning basic living skills. He needs accessible buildings and a patient listener when he is trying to say hello. He needs to live in a society where the same effort that was made to save his life, is made to help him create a life. Focusing on the extreme cases that were described in this article only serve to further polarize. Please run a story of the impact that a well-thought out, well-funded special education program can have. Both of my boys deserve a good education. One does not have to receive it at the expense of the other, if approached creatively instead of adversarialy.
Sharon Devo
Bartlett, IL

This is the point in time where America has to realize where we are heading. Everyday we lose professional jobs to the rest of the world and the situation isn't improving. School systems are strapped more for cash now than they've ever been. By the time I got to high school they were asking student-athletes for $100 per season to play a sport, yet there was one unfortunate young man who had a personal assistant who would spoon feed him lunch everyday. My elementary school gifted program was cut shortly after I left, yet there was never a time when they weren't adding special education teachers. We need to ask ourselves whether we should be spending on talented & gifted programs that invest in the future or autistic & severely disabled programs that produce next to nothing but good feeling for parents of those students. That's not to say that disabled children shouldn't receive any assistance, but stories like the Perkins really show where appropriate education quickly becomes selfish and ridiculous. This country was founded on fairness and we need to keep that alive. So let us show support for the gifted children, the average kids, and when appropriate, the disabled.
J.B.
Charlottesville, VA

If parents don't advocate for their kids, who will? School districts are looking to provide the cheapest education possible so their goal is to minimize a child's disability so services can be reduced. Hardly the formula which promotes a trusting, collaborative team approach which is what will help our children succeed. Until the school districts can figure this out, let the battles continue!
Jennifer S. Voorhees
Cincinnati, OH

I am a former Special Education teacher. I have taught students with Autism. They are difficult to teach.

Like any disability, you need to catch it early. You can make the best use of education dollars at a young age.

The funding issue has never been easy. That is because Special Education has never been fully funded. The federal government passed IDEA, but never fully funded it.

You have to be reasonable when dealing with a School District. No School District is going to give you the moon, when apple pie will do.

Yes, there will continue to be lawsuits. No, I do not have the answer. Neither does the U.S. Department of Education have the answer.

Each student's needs are different. That is why it is called Special Education.
Richard Melville
Midland, TX

It was with great outrage that I read your article The Battle Over Funding For Special Education. Filing for a due process hearing is a last resort for any parent of a special needs child regardless of the child's disability and should only be utilized after all other attempts at negotiation have failed. Furthermore, due process hearings and tuition waivers should only be used to address educational issues in the school, never behavioral issues in the home. It is not the responsibility of the school or the tax payers to help parents parent their children. It is extremely expensive, time consuming, frustrating and has little guarantee of a positive outcome for the parents or the child.

There are times however that school districts force parents to proceed with a due process hearing because of their own incompetence and their failure to address the pertinent issues with any constructive proposals. We found ourselves in this very situation at the beginning of this school year with an inappropriate school placement for our son who suffers from autism and ADHD. After repeated attempts to schedule an IEP meeting to negotiate a more suitable placement, the school district has refused to schedule that meeting due to personnel changes and a lack of communication within their own departments. So what are we supposed to do? This is one parent that has never asked for anything more than what we are entitled to: a fair and appropriate public education with trained and certified teachers and support personnel. I have even refused services that we are entitled to because I felt that there were other children with greater need of the services and the subsequent personnel. But when you can't get answers from your school district or even a meeting to try and negotiate, you are left with little recourse but to file legal action.

Yes, there are parents that want specialized treatment for their disabled children and receive more services than they are entitled to, which is ludicrous and wrong. Forcing a school district to pay for a private boarding school on the other side of the country is not an appropriate use of I.D.E.A. and No Child Left Behind. I find it difficult to believe that there wasn't one school available within their district or a neighboring district that could provide the educational services that their son needed. If there are behavioral issues in the home they should be addressed outside of the school with private therapists that are paid for by the parents. Using due process to handle parenting issues is a gross misuse of the law and a waste of tax dollars. In the end, all of us who are personally dealing with special needs children and facing the appropriate use of a due process hearing will suffer because of this type of abuse of the system.
Sharon Lewkuc
Chicago, IL

As a former public educator (Spec. Ed. Director and Superintendent) and a parent of a spec needs child. I applaud the Perkins' family for pursuing the appropriate education for Luke. The Colorado Thompson school district has nobody to blame but themselves. Instead of spending $191K in legal fees they should have honored the transfer request by the family and this would be a non-story. The Spec Ed director cost the district the dollars by denying the request. I also challenged my daughters district for tuition to a private school for the deaf in Mass. cost=$27K per year and they agreed. She is now a grad student at Rochester Institute of Tech. Good luck Mr. and Mrs. Perkins and especially Luke! To the Colorado Thompson school Dist you need to re-think your position. You have already spent $191k more than enough to cover the $135K for Luke's tuition.
Scott M Gordon
Mansfield, OH

I have been a special education aide for 4 years and have 5 children of my own in public schools. It concerns me that your article never mentions the students who have to share a classroom with children like Luke. What about the majority of kids who have their learning disrupted on a daily basis because the teacher and in Luke's case, 3 aides, have to attend to his needs and compromise the other students time? Did Luke's parents ever consider the students who have their learning put on hold while the staff has to deal with their son? Sometimes it seems that NCLB means that "normal" kids are left behind.
Sarah Leonard
Arvada, CO

As a special educator, having been on both sides of the problem, schools cannot be experts on all disabilities, especially when the incidence is a low one. For example, a small district may have one or two deaf children. It is unrealistic for the government to expect that a small district can provide the specially trained staff to provide for that child as well as a private school with an expertise that is just that. In many cases it is not just finances, but demonstrating that the child is continuing to grow and achieve in the current placement. If the public school can show reasonable growth, then they should continue to maintain placement. However, if they cannot then the parents and the district should look for other options. Unfortunately, the high-income families will always be able to purchase higher quality education while low-income families must rely on public education funding. It was not too long ago that families did not even have that to fall back on. I still believe that IDEA has been an incredible breakthrough for the disabled child.
Jeanne Fredriksen
St. Louis, MO

It seems the School Districts want all the funding they can get, yet spend as little as possible on the qualifying children generating those funds. It appears necessary to fight for anything for your handicapped child.
Reagan Mackey
MI

The number of due process actions is small compared to the number of students with disabilities. The dropout rate for kids with certain disabilities remains 50%, with high unemployment after leaving school. Parents aren't "looking for the best," they are looking for equal access to educational opportunity and meaningful special education services. Schools often spend huge amount of money resisting providing services kids need. In your article, it was clear that the parents sought the special school only after the local district refused to consider a nearby program in another district. That's the kind of shortsighted resistance that often drives parents to costlier solutions than those they originally sought. To say this steals from "regular kids" is preposterous, because students are students, whether or not they have disabilities.

Incidentally, I am the first parent to seek federal litigation under IDEA in the 30-year history of special education in my state. It should have been done long ago.
Sheri McMahon
Fargo, ND

The cost to train and educate children with Autism is expensive. One question would be what is the cost, to the state, for a lifetime of care for a child with NO skills? Next question, what is the percentage of due process hearings compared to the total of disabled. Comment, for every 1 due process there are 10 that probably don't go that route. Last comment, autism is the fastest growing disability population, yet we don't have a cause, much less a cure. What's wrong with that comment, and what are the ramifications.
Paul Deane
Reno, NV

When young children are first diagnosed with autism parents are told about the tremendous benefits of Applied Behavioral Analysis.

We hear about studies that show when autistic children receive a certain amount of this educational therapy before the age of five 50% of these children lose their diagnoses. In other words, they become developmentally indistinguishable from their peers. And, many of those who get this therapy after the age of five still make significant gains in cognitive, social and/or communication skills. Therefore, it is widely believed by experts and parents that this is the best way to educate autistic children, period.

Suddenly there is hope, at least until we hear the price tag: tens of thousands of dollars per year! Therefore, many autistic children do without this educational tool that could offer their best chance at an independent lives.

I appreciate that school systems are being financially taxed by the costs of educating the ever-growing number of special needs children. Yet, I think it is important for districts to re-evaluate how money is being spent across the board. For instance, each school gets a certain amount of federal dollars to help fund Special Education. Yet, in the state where I live that money is not specifically earmarked for special education programs. This means the schools can basically use these funds to pave parking lots or build new gyms! So, when the local school systems cry poor it is hard for us parents of special needs children to take them seriously.
Suzanne De Gregorio
Louisville, KY

I would think that states would want to find out what Boston Higashi is doing right and begin to build their own Colorado Higashi or Illinois Higashi to support families AND schools in their own backyards. Ms. Jay's comment that "regular ed kids are missing out" because of increased spending on special education is divisive and completely unhelpful. Despite the fact that they've been getting short shrift in many districts for years, it's rare that you hear parents of special needs children screaming "special ed kids are missing out" when school districts spend eye-popping amounts of money on new sports facilities. It's time for the federal government to step in and stop this "who-deserves-a-bigger-piece-of-the-pie" argument and begin creating effective, lower-cost treatment and support centers in states and local communities.
Anne Higley
Charleston, IL

As a parent of an autistic son, I've found dealing with special ed to be essentially tragic.

The parent has to risk losing the strength and energy that they need to deal with the child every day just in order to make sure they get what they need in school. Every bit of energy spent struggling in one direction is at the expense or sacrifice of what is needed in another. For their part, the schools are full of people who start their careers with visions of themselves as saviors and miracle workers, but the daily grind of working with autistics, and dealing with inadequate budgets and ridiculous requirements for paperwork and meetings, just grinds away at them until they are jaded, bitter, angry and hopeless. They very soon come to see as their adversary the very children they'd once intended to help. Even in the best cases there is always the risk that if the parent pushes too hard then the school will exact a cruel revenge on the child. It's as if the structure of the whole thing were arranged so that it won't work.

I hate to sound like I'm complaining as my son is in a school where they are very nice and do what they can, but it's like pulling teeth to get what we have, and he needs so much more.

The system in place serves everyone badly on all sides. There's got to be a better way.
Kenneth Newman
Mt. Pleasant, MI

We can all debate about whether parents of special ed students are asking for too much vs. districts not having enough, but the real issue is that the federal mandate which states that these services must be provided is assuming that the programs are fully funded. Unfortunately, however, the federal government has never ever made good on it's obligations to provide little more than marginal funding.

This debate also continues to pit the parents of special needs children against those families who do not have a special needs child, and it always seems to come out making the special ed parents look greedy, unwilling to compromise, and difficult ... especially when remarks are printed, even in this article, stating that the parents want what's "best" for their child, when all we're asking for is what's appropriate for our children. The Perkins family was willing to compromise. They were willing to send their child to another public school in the area, but the district refused to fund that out-of-district placement. The district continued to maintain that their program was appropriate when even the courts agreed that it was not.

Parents would love to not have to go the due process route, but sometimes that is the last resort for our children. The article points out that parents can be penalized for frivolous lawsuits, but the article did nothing to investigate the multitudes of frivolous lawsuits brought by school districts, and the costs involved with those — Now that would be an eye-opening article to those who complain about special ed costs...Folks should know what's really going on when it comes to special ed and due process hearings.

For those who balk at the services that are being provided, do realize that for every $ spent by the district on that child, the family has paid out in multiples, year in and year out, and will continue to do so in hopes that our children will one day be happy, productive citizens.
Ellen Jannol
Valley Glen, CA

The Perkins family dispute is just another in a long line of law suits that remove much needed tax dollars from state education programs in America's public schools. If the US government is so hell-bent on giving special education, and since it is so quick to threaten a loss of federal tax dollars if the school districts don't give in to the feds' arm-twisting, why isn't the federal government just footing the bill itself. I feel sorry for the Perkins family, but the truth of the matter is that their tax dollars are a very small part of a school district's money and their child's education should not take place at the risk of another child's education.

The cost and futility of trying to educate this child is way to high and like it or not, raising a normal child or one with an enormous disability is the responsibility of the parent not the village.
Rob Shalmoy
Summerlin, NV

My son has special needs. His doctor, David E. Mandelbaum, director of child neurology at Robert Wood Johnson in New Brunswick, N.J., said my son's seizures and brain damage plus autism was a result of vaccine lot #2a-41126DTP from Connaught Labs.

This lot # met the FDA Criteria 12 times to be recall and it was not. At about the same time Connaught sent DPT to China. In two weeks 5 children died and their government stop the vaccine program within hours.

I see you are closely aligned with Pharma by your Ad. So I do not believe you would care for the whole story. But if you wish, please contact. It has been an ugly story, from skull scans to "skull and bones" of Yale, from retired FBI to FDA.
Larrie F. Collura
Pittsboro, NC

As a parent of a disabled child, I believe that your story was too focused on the extreme costs for the effective education for Luke Perkins and did not mention the enormous long-term savings for society once disabled children are trained to live without burdening an even more expensive mental health care system. The real problem is not too much funding for special ed, it is not enough funding for all education in our country. Special ed is just a vulnerable target for school districts that feel the pinch of budget problems. Lets increase funding for all education.
Jon Pierce-Shimomura
Richmond, CA

My child is now 12 and also has a diagnosis of autism. When he was a preschooler, my district continually told me what "wonderful progress" he was making, even as he lost skills and fell further and further behind his peers.

In 2000, I removed him from the district; in 2001, I managed to obtain private services, through medical insurance. My son thrived. In 2003, the insurance company contacted the district and decided that he could get his services there (even though that did not happen in four years' worth of 'services'). Keep in mind, the services that allowed my son to thrive did not cost the district one penny, not one.

The perceived assurance that the district would provide my son's services caused the medical insurance to cease providing those services. When I questioned the district about the start of services, the district told me that they made no such promise to provide any services to my son. However, the medical insurance continued to insist that it was so.

The result of the district's interference is that my son has not had any medical OR special education services for more than two years. If it were indeed only about costs and money, why would the district do such a thing?

Beyond that, when they finally, in writing, declared that they would NOT provide the needed services, I was completely content to return to the medical insurance for services. The district instead filed for a due process hearing to obtain approval to NOT provide the services. The DISTRICT, not me, instigated due process and all the costs associated with it.

My experience has led me to believe it is NEVER, EVER about the money.
Anonymous
USA

I feel sorry for these parents but it is not fair for this school district to pay for extraordinary expenses for this child when there are so many children needing help. I pay my taxes as well as this parent and I have sent my child to a church school. I do not expect the government to pay for my personal choices and beliefs.
Paula Powers
Wichita, KS

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