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How to Fight for Special Education

I have often wondered what I would do if I discovered I had a child with learning disabilities. The parents I have interviewed who have gone through this seem more patient and persistent than I am. I suspect they got that way by necessity. Now I have found a couple of books that may help parents encountering this issue for the first time.

One book came out in 2005, the other in 2008. They were sent to me by people who read my recent confessions of ignorance on this subject. They both qualify for my Better Late Than Never Book Club, a list of recommended volumes I would have reviewed when they came out if I weren’t so perpetually behind in everything I do.

They are well-written paperbacks. “Special Education: What It Is and Why We Need It,” (83 pages) by University of Virginia education professors James M. Kauffman and Daniel P. Hallahan, is the more scholarly of the two. It is good on big-picture policy and measurement issues. It deals directly with some the most provocative questions, such as “How do we know if special education is effective?” and “Who should decide whether a child needs special education?”

There is much in the book that parents will find useful. Hallahan himself has a child with multiple disabilities. But it also has academic purpose, to provide, as the authors say “a convenient summary of basic ideas that may be used as a supplement for a beginning course in special education.”

The other book, “Learning Disabilities: Understanding the Problem and Managing the Challenges,” (195 pages) by Etta Brown, a veteran special education teacher in Ohio, Iowa and California, is written expressly for families. The brief bio does not say if Brown was ever the mother of a special education student herself, but she has a remarkable ability to imagine even the smallest problem, and come up with solutions.

My favorite part comes halfway through her book. It reads like the climax of a Western novel, when the lone cowboy gets ready to face down the bad guys: “When the parent has attended all the meetings, asked all the questions, advocated to the best of their ability and the child is still not learning, it is time to take action. Purchase a three-hole punch and a three ring binder...Relevant documents and report cards [should be] stored in one place. Get a copy of everything in the child’s cumulative folder and keep it with the other documents in the three-ring binder.”

With other tools she describes in detail, the parent is ready to do battle in a hearing, or in court. That is just the beginning of Brown’s marching orders.

Are such hostile, military images appropriate? I’m afraid they are. Brown knows that special education teachers like she was before retiring do their best to help every child. But the vagueness of the regulations, the tightness of the superintendent’s budget, the limits of the deputy superintendent’s experience with learning disabilities and other unpredictable factors often put the parent at a severe disadvantage. Knowing the weak spots in the bureaucracy will give mothers and fathers a chance to squeeze as much from the law as it was intended to give them.

Although Brown is a good writer, her book necessarily becomes clogged in some places with names of laws (IDEA, Section 504, ADA), helpful groups (LD Online, SERI, NCLD) and even toxic metals (thimerosal, cadmium, lead). Nonetheless, I have never seen a book on this subject with so much practical advice. It is as if Brown were sitting at your kitchen table, sipping a mug of coffee and answering all your questions deep into the night.

Two important tips from Brown: 1. “If this has all come as a shock to the parents, and they don’t like the way things are going, they have the option of not signing the permission form” to begin special education services. "Nothing can be done until they do.”

2. “If [during one of the long meetings with educators] the parents feel overwhelmed, they may call a time-out and reschedule after a time during which they can read and gather additional information.” Brown’s book is full of such information.

Parents may want to buy two copies of “Learning Disabilities,” since their first is likely to become marked-up and dog-eared beyond recognition. Then, for a break, they can explore the Kauffman-Hallahan book.

The professors take a few steps back from the fatigue and stress of a two-hour individualized education plan meeting to help parents understand the big issues. Their book would be invaluable to communities that have gotten into political fights over special education funding. School board meetings on such topics often deteriorate into unexamined assumptions and misinformation. The Kauffman-Hallahan book clears the air.

For instance: “Special education is effective if and only if students learn more with it than they would have learned without it. However, it is very hard, if not impossible, to do scientific experiments to show this, simply because it’s not legally or ethically defensible to withhold special education from students for any amount of time just so they can become a scientific ‘control group'."

Many parents who have been fighting for their children could write books like these. But they don’t have the time. Both books will fit in a purse or a jacket pocket, ready to be pulled out when confusion thickens and nerves rub raw.

I’m not sure I could handle the situations special education parents deal with every day, but with the help of these authors, I would have a chance to get started without being knocked over, and gain time to get my balance.

By Washington Post editors  | October 9, 2009; 6:00 AM ET
Categories:  Jay on the Web  | Tags:  Daniel P. Hallahan, Etta Brown, James M. Kauffman, Special education, learning disabilities  
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Comments

The hardest battles seem to be for the children with deepest needs, for of course their education would be the most expensive. If you get to know some parents with exceptional children, you'll see the battle scars. Many of them smile way more often than I would with their challenges. One family I know had to take the city of new york to court to get approval for the special program their severely autistic (but clearly intelligent) son needed. It was a yearlong court battle over preschool! luckily, the courts agreed with the scientific evidence that indicates very strongly that the younger you begin to intervene in autism, the better the results. these parents were highly educated, resourceful -- and exhausted. We have agreed as a society that education, appropriate education, is a primary aim of government. Why do we turn it into a battle of endurance and resources?

Posted by: annie4576 | October 9, 2009 12:38 PM | Report abuse

Unfortunately Jay, the door swings both ways as there are also parents who insist that their child receive services that would be of no benefit to the child. I know several special educators who, incresingly each year, are confronted and badgered by parents demanding expensive services that does the child no good. I know one spcial educator who had a parent who had no background in special education. The parent demanded servcices for her child and even brought a lawyer with her. Most of these services were unanimously agreed upon by the educator, the classroom teacher, the school psychologist, and the testing coordinator would not benefit the child. Yet she still demanded them and stated that she took her child to an independant doctor. The doctors report, which the parent only gave up after the schools legal department got involved, echoed exactly what the special educator had been sugesting all along. These services would not only have no benefit to the child they would hinder the child by reducing the time they would have had receiving services that would help. That still didn't stop the parent from demanding the services, nor calling up other parents and telling them they need to demand them also. So you see Jay, it's not a one way street. Parents need to stop demanding services simply because they feel entitled to them.

Posted by: akmzrazor | October 9, 2009 12:39 PM | Report abuse

Most American schools are orientated towards sport programs. Thats where the majority of the monies go.. Most,, if not all schools are authoritarian in nature. I would hazard to guess that an autistic person would not
hold still for this invasion of self.

Autistic people are not very regimented where as,,authoritarians are always regimented.

Posted by: bugmenot | October 9, 2009 1:44 PM | Report abuse

My disabled son (high functioning autism) is 17 and a senior in high school this year. I'd have loved a book like Brown's in our earliest years of dealing with the school district! Yes, by now, DH and I probably could have written it ourselves. We've both lost count of the number of parents we've tried to help - sharing our IEP's, explaining the laws in common English, knowing which administrators in the school district were easy to work with, and which to avoid.

Eventually we boiled it down to a couple of simple things:
1 - Always bring a recording device to every meeting. This serves several purposes; it keeps everyone in the meeting cordial (no one wants their shouting matches recorded, so they don't get into them), district staff won't lie to parents if they're being recorded (but they sure will if they think they can get away with it!), and the district staff will suspect the family is consulting with an attorney and preparing to file a suit so they'll do everything they can to avoid giving the family any legal standing (in other words, fearing they'll lose the pending suit, they are suddenly very motivated to give the kid the necessary and appropriate services).
2 - Banish the word "best" from the parents' vocabulary, and replace it with "need" and "necessary". State and federal laws don't require the schools to provide what is *best*, so don't bother to talk about it. Schools are legally required to provide what is *necessary* for the student to benefit from his education, so talk about what s/he needs.

That's it - the core for every parent of a Spec. Ed. student. There's a lot more (FAPE = Free Appropriate Public Education, LRE = Least Restrictive Environment, etc.), but everything else is going to vary depending on the individual kid's abilities and disabilities.

Posted by: SueMc | October 9, 2009 2:08 PM | Report abuse

well akmzrazor having seen both sides of the issue I'd say the adminstrators who tend to get hung up with thier "educated" opinion do more harm than the parents pushing for thier child.

I've got a child who had an easily correctable but hard to diagnose visual tracking disorder. Took a year of arguing with the principle over whether or not the well above average child, as determined by the tests she ordered then ignored, actually had a problem. She enabled the special ed department to be lazy. When I asked for another principle from another school to be at a meeting that principle spent the first half of the meeting arguing over why they weren't following the districts own policies. In the end it was only because I had the resources to take the childe to an outside expert and get a full diagnosis to get any help at all. In the end being right meant more to her than helping the child. And every principle in the district from now on will deal with parents who've been told by other parents to go in guns ablazing or they'll be ignored.

Yes some parents go over the edge but one principle or special ed teacher going the other way causes far more harm than a thousand pushy parents.

Posted by: galfax | October 9, 2009 2:11 PM | Report abuse

My heart goes out to special education children and their families. If one of my children needed extra services, I, too, would fight for those services. But, I have had special education children in my classes that are so disruptive that I have to wonder if it doesn't affect the learning of the other children.

Some make constant noises and scream. Some will hide under the tables. Some eat the crayons. Some say inappropriate things to classmates. Some cry. Some don't do anything, the assistant will do their work.

While I understand "least restrictive," at what point does disruptive behavior violate the learning conditions for others? That might not be a politically correct question to ask...but it is nontheless one every "regular" ed teacher has asked.

Part of the problem is money. The SpEd teacher usually has been assigned the maximum number of students. Many of the IEP's state that the child should be assigned an assistant when inclusioned, but the SpEd teacher has more children than assistants. When they come to my class, art, the SpEd teacher attempts to send them w/o an assistant. This often causes problems within the classroom and I have to have a follow-up conversation with the teacher.

School districts should offer professional development, or actually, college's should offer a course for all ed majors on sped issues. Most teachers these days will have an occasional inclusioned student. The course should include, but not limited to, federal and state mandates, the right's of the student, as well as the right's of the teacher.

Again, to those on the outside, solving the problems of public education seems simple. But, it is those grey areas that cause the majority of problems and those for which there can be no clearly defined right or wrong solution.

Posted by: ilcn | October 9, 2009 3:05 PM | Report abuse

"For instance: “Special education is effective if and only if students learn more with it than they would have learned without it."

Special education is effective if and only if it will enable the child to live independently as an adult. Children who will never be able to dress themselves or who are sociopaths can cost the local school district $50,000 to $150,000 a year. In these cases, the "education" boils down to baby sitting on the school district's dollar. These children should be the responsibility of the state welfare agency.

Yes, some parents choose to dedicate themselves to care for these eternal children. When the parents die or are to old to handle the problem? The adult child is then dumped into the welfare system? Talk about "cruel and unusual punishment."

Posted by: billwald | October 9, 2009 5:20 PM | Report abuse

The witches' brew of acronyms is a must for parents, and IDEA, NCLB (no child...) and the 504 are easily mastered in two hours study. The overall concepts, I mean. Geez, that is the ground floor. Read up.
As a master's candidate in EEX I wish you could see how committed these teachers are to your kids. The whole "come in with guns blazing" sets the wrong tone and wastes valuable time that could be spent narrowing down options for the student.
Every teacher I know - and me - thinks that these parents have channeled their rage at the disorder to the school, since there is no-one to fuss with about autism, etc. We know you are venting on us and wonder if this is what you would do if you have a chance to catch your breath. We are on your side.
BTW - ldonline (learning disorders online) is a fab web site and I am glad Jay mentioned it. Everyone in out program including the doc. students uses it all day. Tune it - there is a lot to see and most is in layman's terms.
Be grateful for the IDEA and its major amendment. Mandating a research-based assessment and plan for your child is all good and I welcome the chance to help your child soon. Playing prosecuting lawyer with a tape recorder running makes no dent in my energy, dedication or knowledge base, and I bring all that in with me, every day.
And bear in mind that a good education program may have elements you do not like. This is true at any level. We do not work to suit parents. We work to suit children, and we use rigorous, evidence-based practices to do this. Helping your child advance 1.5 levels in reading may be a win in one year - but that child may still be behind. Success is not bringing everyone up to honors level. Success is measurable headway and a workable plan for continued growth. And this is KEY - be sure to attend the transition meetings that are mandated at age 14 and older. See what is on the table for plans for your child as he/she ages out of school. This is a place to pay attention and perhaps hire an expert. KEY meetings, these. Attend them.

Posted by: nancyjeanmail | October 9, 2009 9:21 PM | Report abuse

I didn't read all the comments here. The main thing in all of this is that there is NO enforcement to make schools follow FEDERAL law and help these children. It seems that all public schools across teh USA are exempt from FEDERAL law.
No matter how many PWN's you request, how many meetings you record, how many state complaints you file, how many DP's you file, NOTHING is going to work UNTIL school employees have to pay fines and/or prison time for violating FEDERAL laws like the rest of the free world.
Most parents don't know that the TAX MONEY they give to pay these educators PAYCHECKS is used to hurt their own children!
Lots of people don't know special ed laws in schools. Like me, I didn't even know they existed. This is ANOTHER thing that schools are suppose to do BY LAW, and they don't.
I have wrestled with GA dept of education for numerous things about my school district and they were ALWAYS in favor of the school, even blatant violation of laws.
Heck, even the state violated THEIR own laws in investigating my complaints!
All you have to do is a simple google search and/or go to www.wrightslaw.com and find out all about the rampant corruption of special ed in public schools in the USA.

Posted by: sisymay | October 9, 2009 11:02 PM | Report abuse

People here that are on the 'other side' of the table, the schools side, must not have special needs children who has needed help in school.
I know some people who are on both sides of the table and they were horrified to learn just how corrupt it was when they tried to get their own school to help their child. A child who attended their own school, a parent who works as a teacher at their own school.
Teachers get FIRED for helping children, inform parents of their rights, etc.
Lots of teachers don't know the special ed laws themselves, so they blindly follow the administrators and think everything is being done legally.
Then, when the parents stand up and want the school to do right, they wonder why the parent is in such an uproar.
If the schools would do right to start with, parents wouldn't have to be this way.
Funny how schools can lie, cheat, intimidate, be hostile, discriminate, bully, violate FEDERAL laws, and NOTHING is done about it.
BUT, when the parent finally learns what is going on and tries to put things right, they are the BAD PARENT.
WHO is REALLY bad here?

Posted by: sisymay | October 9, 2009 11:26 PM | Report abuse

An easy explanation for why schools do not follow federal law regarding special education is that when the legislature wrote the law, they did not provide the additional funds necessary to implement it. Therefore, schools have to hedge to stretch the budget to provide the "appropriate" services guaranteed in a "free, appropriate, education" with the funds allotted before all this was guaranteed.
And, yes, I agree that many administrators and teachers are ignorant of the law and why the schools can't implement them. It would be very easy to tell parents, "we just don't have the money to provide an individualized education for every child that needs one." "So, we do the best we can with the money that we have to work with." This would win more parents to the side of the school, and help them direct their anger at the correct source, the legislature that failed to fund the law that it wrote. And just perhaps a question or two to your state and federal congressmen would bring attention to this fact.
Then, parents have a role to play in preparing their children to learn. A healthy breakfast, some physical exercise, and a good nights sleep would work wonders. Cutting out the soda, and junk food, and greening up the child's environment by removing toxins from the home have demonstrated that a change in the child occurs within a few days. This, too, is available in Etta Brown's book available at understandingld.com.

Posted by: EKBro | October 10, 2009 6:24 AM | Report abuse

To EKBro, I understand your comments. But the big thing that goes against your point of parents should be mad at the gov't instead of the school, is that the very law that mandates schools to help sped kids, the law that is NOT being funded, states that schools can NOT use 'lack of funds' as a legal reason to refuse services.
You are right though, that if schools would just tell parents the truth that 'they don't have enough money' they would win them over, can work together, etc. BUT schools DON"T say this. The reason? As I stated above- they KNOW that using 'lack of funds' as a reason to refuse services is ILLEGAL. So they go the route of being intimidating, hostile, lying, cheating, violating laws, etc.
It's just horrible all the way around.
Whether or not the IDEA law is funded properly, schools are still violating FEDERAL law if they do not follow it and help the children.
All the things you listed such as good diet, enough sleep, etc are good for ALL children, but these things alone are not to replace what learning disabled children NEED, a specialized program taught by qualified teachers, implemented in the correct and legal way.
A parent can provide ALL the things you listed above but none of these things will remediate the child's learning problems/differences.

Posted by: sisymay | October 10, 2009 9:36 AM | Report abuse

Go see www.GetIEPHelp.com -- it's one of the best resources I've found for parents of special needs kids who want more guidance. They offer a downloadable book & workbook called "Ask The Special Education Advocates: A Parent's Guide" with the secrets parents MUST know but the schools don't tell you. GetIEPHelp.com also provides free teleseminars for parents twice a month and all you have to do is sign up with your first name & email address for notifications. And they offer a 2nd opinion on your child's IEP - before or after the fact. Way worth checking it out. It's a gold mine of info.

Posted by: EducationConsultant | October 10, 2009 1:41 PM | Report abuse

Solid advice...but after 30 plus years of parent/student advocacy I would suggest that the parent begin the binder right from the start...NOT after many frustrating meetings...Enter ALL emails and letters exchanged. Staple envelopes to letters. Enter all teacher notes, grades, evaluation reports etc.Enter, date all telephone exchanges..Learn absolutely superb information on Wrightslaw.com, dynamite in content for both parents and instructors. Sign up for the free newsletter briefs with links to just about everything one needs in in resources. Don't delay...your binder is GOLD!

Posted by: Chinle | October 10, 2009 4:38 PM | Report abuse

Jay - Thank you for the article. It is sad, but true. It is a fight at some schools. A high school student had straight A grades, her best attendance since 5th grade, her parents drove her to and from school as she often could not ride a bus, her absences were 100% excused, she was well known for her own charity work for others. What "accommodation" did a school Vice Principal seek? The V.P asked for, and received approval from, the cluster head to contact Child Protection Services due to absences. Experience tells me, this will not be easy for readers to grasp because truth is stranger than fiction. Perhaps another story will help from Wrights Law: http://www.wrightslaw.com/info/retal.primer.htm.

Thanks,Jay for writing. Our triangle didn't end. Our daughter is still afraid, but not at her new school.

Posted by: ShirleyBridges | October 10, 2009 5:54 PM | Report abuse

Being a parent who battled the unscrupulous, unlawful and unethical practices of our school district, I can tell you I have NEVER met a single employee of Pupil Services who has the necessary integrity and decency or intelligence to truly understand how to help a student with learning disabilities. All these people care about nothing but the paycheck every month which comes out of my pocket. They don't have the passion to help. For them it is nothing but a way to earn a living. sissymay is correct about nothing changing while there are no penalties for ignoring federal law. All these school personnel including teachers I dealt with ignore the law every day. Teachers aided the school districts in violating the law. They all do it with straight faces. My experience has been that to work in Special Education as teacher, psychologist, director, one has got be someone who lies without any shame and has no integrity. It may be a sweeping generalization but that has been my experience.

Posted by: pcot | October 11, 2009 7:06 AM | Report abuse

Having a parent that works with children that have special needs, I know about the hardships that the kids face. With the "No Child Left Behind," these children that perform tasks at levels way below their age, must take the same tests in the same allotted time as the kids without special needs. Also, with all the rules that come along with standardized tests, the resource teachers aren't allowed to assist the struggling kids. It's unfair and cruel to ask these students to magically perform at their age level. The sad truth is that none of them will ever be able to function at a level equal to their grade or age. That's not to say that they aren't trying incredibly hard, it's just that they can't, and it's not their fault. They didn't ask to be born with the genetics that they have. It's not our job to take them in and nurture them like infants their whole life, but it is our job to be fair to children of special needs and to make learning as accessible and easy as possible for them.

Posted by: ks92 | October 11, 2009 2:54 PM | Report abuse


Sisymay's comments are exactly right!

We hear too often the mantra that IDEA 2004 is not fully "funded" so that is the excuse districts give for not following this federal law. It's not their fault - the feds impose this law on them and then won't fund it.

States have to follow federal laws even if no dollars are provided by the federal government. Such as, ADA mandates that private businesses must make reasonable accommodations for persons with disabilities. The feds do not "fund" this law.

These are just excuses. Districts do not mind at all spending millions on school board high-dollar attorney fees to fight parents and their children with disabilities. They would rather give money to rich lawyers than provide an aide to a child with a disability. And they complain about lack of funding all the time! They love to take the federal funding and ignore the law! They want their cake and eat it too. Where does the money go? Not much of it goes to the children who need it.

Think of this - a classroom of 25 kids "costs" a typical district about $250,000 a year. The teacher gets about $42,000. Do the math. That leaves $208,000. Let's say there are 3 children with disabilities in the classroom that, most costly scenario, need a 1-1 aide (very, very few, if any, children need a 1-1 aide) that costs about $15,000 per year. That's another $45,000. Still have $163,000 left over. So let's add a full-time sped teacher for a co-taught classroom. That would be another $45,000. We still have $118,000 left over for administrative costs, etc. Think about it though. How many classrooms have a full-time sped teacher along with the regular teacher? Less than one per grade. How many students in a regular classroom get a 1-1 aide? Not many! So spending the very most you can spend, still results in half left over. Where is all the money going?
Why don't citizens revolt or at least ask questions?

There is PLENTY of money with lots left over! Who is getting the "left over"???


Posted by: concerned36 | October 11, 2009 11:15 PM | Report abuse

concerned36 is right, too! I wonder if there is anyone out there that knows public schools all over the USA gives special ed funds BACK to the federal gov't each year?!?! WHY do they do this, and then say they don't have enough money!!

http://www.wrightslaw.com/heath/oped.fed.funds.htm

And I also bet they don't know that schools would rather spend thousands upon thousands of dollars to NOT help a child, i.e. take the parents to court, when they could have spent a fraction of that just to go on and help the child.

All this thanks to your so called 'educators'

As for who is getting the 'left over'? It is the sports teams and some school district superintendents who ride in limosines with their own drivers. REALLY!

Posted by: sisymay | October 12, 2009 12:07 PM | Report abuse

I also believe there is a black hole of money spent by school districts on attorneys. As a disabled student wanted a locker, not to run in PE, use email to turn in homework, have her doctor's notes and then letters accepted as in previous years, get credit for completed work, have her absences excused. She pleaded, she eventually cried, she eventually became weak and fatigued. But no. So her medical staff at the hospital suggested the parents contact the OCR. After one and half years there was an OCR decision. I understand from the OCR that often a school will work with them, but this school hired a lawyer (perhaps the Harvard Lawyer they have been known to use?). They spent:

FAIRFAX COUNTY
PUBLIC SCHOOLS
September 1, 2009

FCPS Legal expenses involving
(XXX child)

Total Fees $65,652.95

Now, that is simply nutz to spend such money fighting one disabled honor student known for her own charity work for our troops and others. Nutz. However, I understand it is a drop in the bucket compared to due process...Dare anyone peak at those dollars that are not getting to our students and teachers? The $$$$ numbers I saw in a recent bill were a bit horrifying. Ever wonder where the money goes?

Posted by: ShirleyBridges | October 12, 2009 10:43 PM | Report abuse

After 30 years in public education with a masters degree in special education, and an educational specialist degree in school psychology, I can say with accuracy, there were few educators with advanced degrees. Educators are not the brightest bulbs in the chandelier, and as has been stated most are not even aware that laws exist.
The stats will support that most teachers and school administrators are in their Plan B positions. They couldn't hack it as a methemtician, so they teach math instead. People wind up in education for a lot of reasons, and some of them are doomed forever to defend the status quo because they don't know how to change it. Has there been an outstanding person in public education since Horace Mann?

Oh, just one more thing. I notice that there are no comments about what parents are doing at home to help. There is plenty parents can do for their own children. As Jay recommends, the book by Etta Brown tells parents how to do it from conception through grade 14. The book is available at Barnes & Noble, Amazon.com,
and www.understandingld.com, and if a parent can't afford the book, they will send you a free ebook. Just leave a comment telling them why you want the free ebook.

The schools are not the best, but there is also the question about what parents are willing to do for their own kids.

Posted by: EKBro | October 15, 2009 5:31 PM | Report abuse

dumniggar, step back and consider that most learning problems are caused by damage from the environment after the child is born. Also, consider that race, and income this time will not protect you from the type of environmental toxins that are causing the problem. 98% of children in special education are not born that way. They are made so by their environment. Vaccinations, junk food, poor parenting, and lack of sleep, are equally as effective as poor genes in creating a handicapped child. Buy the book Jay reviewed. It's in there.

Posted by: EKBro | October 15, 2009 5:41 PM | Report abuse

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