Navigating the Special Education System

In the second part of a series exploring the costs associated with learning disabilities, Patient Money columnist Walecia Konrad today offers advice for navigating the special education system for children with learning disabilities.

More than 6 percent of school-age children — almost three million students — are receiving special education services because of learning disabilities, according to the Learning Disabilities Association of America. The cost of such special services can easily total thousands of dollars a year per child. But the Learning Disabilities Association suggests that when learning disabilities are left untreated, the overall cost to society may be far higher.

To learn more, read the full story, “Nudging Schools to Help Students With Learning Disabilities,” and then please join the discussion below.

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I’d like to add my family’s long saga with dylexia. We had mirror image twin sons 51 years ago. The first born, who we later learned had a twisted embalical cord at birth, was always significantly lagging behind his brother, from crawling, walking, but most of all reading and overall school performance. Years of battling teachers, school principals, school boards and even professional psychologists (many of whom still deny that many of these problems even exist). In the end we were rescued by the PAL Program at Curry College in MA. Today, that son is a practicing School Psychologist, who is our family hero for his spirit and never giving up on himself or family support.

As a special education teacher, I found this article upsetting in so many ways. This is especially upsetting because the topic, navigating the system for your child, is an extremely important one. Where to start? First of all, if you’re going to write an article about navigating the special education system in public school, why start off in a controversial manner, with lawyers mentioned right off the bat? Why not start from the inside and interview special education teachers and child study team members? We could give many practical tips on how to work within the system in a productive, non confrontational way that often produces just as much, if not more, results as being confrontational.

Your article was irresponsible and ill informed on multiple levels:

1. By starting with a picture of two white upper income people (the young man has a laptop), and mentioning lawyers and $5000 private diagnoses services, you are implicitly talking to one segment of our population, the upper income white segment. Perhaps this is intentional; perhaps for you this is all that exists. However, white upper income people make up a very small proportion of children with special needs. This article doesn’t address the vast majority of people’s needs because most people don’t have the money to pay for lawyers and expensive diagnostic services, nor do they have the time to spend on endless meetings with school officials. An article addressing the reality of most people – people of color, people of limited means or time – would have been far more useful to a wider range of people.
2. In addition, the article is very confrontational. It talks of lawyers from the get go. It doesn’t interview experts within the system and basically talks about how to aggressively tackle it as long as you have money and time. I have to say that we teachers and child study team members go into the field because we want to help your kids and because we are trained to do so. Yes, schools can drag their feet (it’s expensive). But I have seen many, many parents convinced their child needs special services they don’t need (it’s the least restrictive environment, not the most–this means the school is obligated by law to try the classroom first). Their solution, if they are upper class and a certain sort of person, is to go nuclear. Of course, this is a case by case thing–sometimes you have upper class people whose child is just not being served and who go to bat for them. But more often than not, sadly, you have parents with nearly unlimited means spends tens of thousands of dollars in lawyers’ fees and private consultants all so their child can be classified as learning disabled so they can then get time and a half for SATs and an edge into colleges. Seriously. This happens a great deal. If you don’t believe me, check statistics–how many upper income kids are diagnosed with a LD that gives them time and a half versus lower income? For low income people of color, it’s almost zero. For upper income people, I have encountered a sizable minority or even majority. There is a very good book written on this topic, class biases in special education diagnoses. (Conversely, poor children of color, particularly African American boys, are diagnosed at extremely high proportions and without parental involvement.) Class as it plays out in diagnoses is a very real, serious issue that this article completely ignores.
3. Finally I find the timing of this article offensive. In our dire economy schools are slashing staff and departments. My own school will be letting 15% of the staff go and will be slashing the entire theatre program. Yet none of this is mentioned at all in this article, which seems to exist in an alternate universe in which money is unlimited and your own child is all that matters. The harsh reality is that if your child gets sent to a private school for $100,000 per year, that is $100,000 per year less the school has for everyone else. In our current society, that means two fewer teachers in the entire school per year because of one child. Of course, if it is determined that this is the least restricitve environemnt under the law, then that is the law. But the government mandates laws it does not fund. It’s a disaster. A little humility here would have been in order.

Unfortunately when it comes to the school system, you need to assume that they are your antagonists, not your partners. I speak from years of experience with my own severely handicapped child and many observations of others. You need to send any communications via registered mail because otherwise the school may deny ever receiving the letter. You need to find an advocate and take one with you to meetings. You may well need to hire a lawyer. You need to make sure that the education plan includes truly measurable objectives, not just vague platitutdes, because vague objectives are a blank check for the school. They can have lots of excuses for not providing the services they have agreed to provide. You may find that, for example, even though your child’s plan includes physical therapy, the school will tell you that they couldn’t provide it because the PT left and they haven’t hired another one yet. This will mean that your child won’t get the therapy in the plan. Sometimes the school won’t even provide the transportation they are supposed to (the bus driver was sick, the bus broke down, etc). You have to just keep politely but firmly insisting that they provide the services that they have agreed to provide, even if it means they need to send a taxi to take your child to school or contract for temporary PT services. .

To All the Parents of Children with LD or SLD:
I have been navigating the waters of public education for my child for 7 years. My advice on what works:
1) Know your rights
2) Be Vigilant about research and education regarding your child’s LD; you have to be an expert!
3) Be Extensively Involved in the Classroom in Elem School with them -Volunteer
4) Become best friends with your child’s primary teacher
5) Build relationships with administration and teachers responsible for providing IEP and Accommodations for your child each day. Thats the key to having immediate response when something goes wrong or needs changing.
6) Be completely involved in writing your child’s IEP, as well as updating and noting the changes in your child’s LD. As they grow older things change and adaption is necessary.
7) BE VIGILANT EVERY DAY; communicate with teachers asap when things arent done correctly with regard to the IEP, accommodations etc….
8) No one is better at being your child’s advocate than you!
Arm yourself with research, info, your rights and get in there and fight for them to have a good learning experience!
9) Be loving, kind and patient with your children however difficult at times it is, I KNOW.

The article states that it is important to become an expert on your child’s disability, and I agree wholeheartedly. By the time my child left elementary school, I found that I knew more about dyslexia than any teacher or administrator in my school district. These people have to deal with a very broad range of students, and simply can’t put in the time needed to become expert or even stay current with any one disability.

The frustrating part is that most of them are unwilling to believe that I know anything at all beyond the fact that I love my child. They feel that a parent’s role on the IEP team is to say yes to the “real” experts. Every meeting is a battle because of this disrespect, but at least I know what to fight for.

As a teacher in a fairly affluent school system, I have
a different perspective on parents and the special
education system. I really feel that most parents are
extremely aware of how to negotiate the system and
we end up testing (and qualifying) many children who, I believe, are really just in the wide range of average or normal. Last year, almost 20% of my students were on
IEP’s. Sure, there are children who really need services,
but many function normally with a few adjustments in classroom instruction (which I do as a matter of course, anyway). The bloat in this system is just incredible.

As a parent with an 11 year old “twice-exceptional” child in the sixth grade I have been navigating the special education system for years. The struggle to get my son an appropriate education is constant, but I feel fortunate that at least we understand my son’s rights and have the wherewithal both for the fight and to fill in with private services when we must.

The real tragedy is that there are many, many children who need services but will never get them because their parents are simply not aware of what their children are entitled to or need, or because they do not have the resources (time, financial, and/or education) to take on the school system.

Becky McGee and Kyle are not unique. In New York City, over 160,000 school-aged children are known to have disabilities that effect learning. To help their children succeed, parents must know their rights. And in New York City, they also must know how to negotiate a complex and rapidly changing educational system, talk with stressed and often overworked teachers and administrators who may not understand the law, and approach the school as equal partners in their child’s education. Some parents, especially those with financial resources, turn to lawyers for help as the McGees did.
But there are free, highly effective options for New Yorkers who have children with disabilities to learn information, resources and strategies to help their children.

One option is Resources for Children with Special Needs (RCSN), a New York City non-profit, IDEA-funded Parent Training and Information Center helping thousands of families every year to understand and navigate the special education system on behalf of their children. In 2009, RCSN helped over 7,000 parents be where they belong – in the driver’s seat.

All of RCSN’s services are free to New York City families. Anyone can attend our city-wide free training series – with topics spanning Early Intervention through Transition to Adulthood, and can obtain personal consultation, information, and guidance on evaluation options (both private and through the school system), the IEP process, transitions, community resources (tutoring, afterschool, summer camp) and much more.

RCSN can be reached at 212-677-4650 or online at //www.resourcesnyc.org, which includes a comprehensive list and free registration for upcoming trainings across the city. The website also includes critical information on issues like the kindergarten enrollment process, high school application, diploma and credential options and implications for student with disabilities, and changes in regulations and laws affecting New York City students with special needs. Parents can register for workshops, get the newsletter, or talk with a seasoned, objective, and professional advocate – most likely also a parent of children with special needs — to help understand and strategize effective approaches to getting children what they need and are legally entitled to.

RCSN is lead partner for two New York State Special Education Parent Centers: the Manhattan and Bronx Parent Centers without Walls (www.bronxpcww.org and //www.manhattanpcww.org). Along with our partners, Advocates for Children and the Jewish Child Care Association in the Bronx, the Parent Centers offer an extensive menu of workshops for schools, community organizations and parent groups to guide families through the process of helping their children reach their fullest potential. The Parent Centers advocate for effective instructional practices to assure that every child learns to his or her fullest potential. The New York State Education website lists special education parent cents for every borough at //www.vesid.nysed.gov/specialed/techassist/parentcenters.htm.

From the infancy through age 26, RCSN and our sister Parent Centers are here to inform, educate and support parents through the evaluation process, to understand their rights, and to effectively advocate for their children in New York City’s often byzantine administrative and legal processes. We help thousands of parents every year, and will continue to do so with knowledge, independence and a passionate belief in the value of every child.

Rachel Howard
Executive Director

Winston Prep, where I used to teach, has specialized in learning-disabled students since its creation. It has worked with a few NYC lawyers to help secure Board of Ed funding for students, which the BofE has naturally resisted tooth and nail. Advocates for Children (I believe that is the name) offers assistance, pro bono, with a serious backlog due to the numbers of people who need this kind of assistance. They can presumably recommend other practitioners in the city.

Although inevitably this article will be followed by tedious commentary attacking the rich for their ability to “discover” learning disabilities, I can assure you that the problems are not limited to the upper crusts — the nature of American class is that a poor student who performs badly as a reader can often be benefitted by the same kind of remedial training that helps dyslexics. “Normal” reading is beyond the reach of the under-achieving poor child in the same way, so long as our model of education remains one-size-fits-all.

Costs are escsalated and far more exhorbitant when considering acquired disability-if not vocationally retrained the adult sits idle and drains the taxpayer pockets for food stamp program/rental subsidies and social security/medicaid till death. If voluntarily wanting retraining, people like myself sometimes have to legally challenge the state we live in to force them to pay for vocational training so we newly born cripples and retards are not socially oppressed as is the plan. Don’t spend money so we can return to the workforce-keep us out, in abject poverty on limited social funds and complete the scaffolding necessary for a three class strata system under capitalism.

This is very interesting

I’ve got two kids with learning differences (age 14 with dyslexia and age 11 with dysgraphia.) I have been told by two public-school teachers in two different schools and also by the head of my kids’ current (private, special-ed) school that public-school teachers cannot, by law, recommend a private school or even private services for your child, even if they feel that would be best for the child. They can only talk about what you can get through the public-school system. (Both public-school teachers told this to me sotto voce.)

What this leads to is parents being unaware of what else is out there unless they find it themselves and also that parents with a child in public-school special-ed may believe their child is getting all the services they need when they are not.

Be careful. There are many truly wonderful people working in public schools and many wonderful public schools. There are others, however, who lose sight of the fact that it is, or should be, all about the kids.

What I’ve encountered is parents who can afford to pay for many services instead of encumbering the already-strapped schools get taxi services to far-away special schools, or even get tens of thousands of dollars to pay for residential placement in another state. All because they can afford to hire the lawyers who can bend the system to their monied will.

The rest of us have to spend our lives fighting for barely-adequate services – and the fight starts anew every year, and with every IDEA meeting.

It’s a hellish process. It absolutely takes over your life. Yes, the costs of services is breaking the schools, but why have the laws if you can’t fund them? And we need services for both sides of the Bell Curve – not just the kids with deficits. High IQ kids have their own issues but are being terribly shortchanged because everyone thinks they’ll just coast and do fine without any services or programs.

Parents want “optimal” but the schools insist they’re only required to provide “appropriate.” Huge gap between those two educational settings, and outcomes.

It’s a nightmare, and it’s a shameful one.

I just spent the last several months navigating the system to get help for my Autistic son. I thought I was prepared with three outside evaluations, documentation from his Pre-K teacher and an advocate familiar with the system. I met with extreme opposition from the Nashville School system. They would not accept outside evaluations, and they refused to give my son an IEP. They pushed me to get a lawyer, knowing that the cost and length of the court battle would discourage me. I could not afford a lawyer, the retainer was $10,000 for a case like this. So I got another advocate who is more aggressive and scheduled another meeting. This process took months to get another meeting and while I waited I talked with dozens of people who had gone through the process. I got involved with the people who were against me and asked them how I could help the process. I spent a lot of time at the school getting to know the administrators and how to work with the system. It took a lot of effort and I finally got my son an IEP that provides some assistance. In my research, I found that the school was not funded to provide the assistance required by law. The administrators and teachers were discouraged because they were being told by their supervisors to delay the process, so that the parents give up. The most important thing I learned is that the parents were the weak link in the chain. They want the school to fix their child, rather than do what they can to work with the schools. They have an entitled perspective of the IDEA law, thinking they are entitled to an education for their child that does not interfere with their lives. Shame on these parents. School should be a supplemental education to your child, meaning the parents educate and the school reinforces the learning.

Great article. I was a child with LDs and my parents spent hours fighting with the school system until they finally gave up and sent me to a private school that specialized in LDs. That school changed my life and made my parents’ lives better because they didn’t have to fight anymore. Sadly, not every family can send their kids to the sort of school I went to, due to economics. I wish public schools provided better care for kids with LDs. But too often, you have to fight tooth and nail to get services.

And Never Again, kids with LDs are often gifted. Having a LD DOES NOT mean you are on the low end of the bell curve. It is a common misconception that is very harmful. I happen to be be gifted, as well as having LDs.

I am grateful to come across this article and to read the responses and the resources offered. I have a child with a LD that will be entering Kindergarten this upcoming school year and I have run into so many road blocks. It is amazing to me how I have been pushed into the public school system without knowledge of other options(i.e. Charter schools, specialized schools, private schools). I am only now finding more parent groups that can assist me in this process. I believe parents are the best resource in some cases when it comes to schools because they have been through the process or are in it. I do not have the means to sue the department of education much less do I wish to do so just to prove that my son can get a better education in a different environment than what is recommended. I just want the best education for my son without the hassle and roadblocks.

I came to this discussion a bit late, but I would like to add. It is sad but true that in this country you get what you pay for. Children that are disabled (or not) will only receive customized services in a private school. I work in a private school in NYC and my kids go to school in NYC public schools. Public schools have larger classrooms, few enrichment programs (art, music, phys ed etc.), little teacher support and large immovable administrative systems. Private schools have smaller classrooms, lots of enrichment, and independent administrations and teachers that can change curriculum and classroom practices. Private schools also cost alot of money (more than a private school teacher can afford).
My son has an emotional disorder (Juvenile Bi-polar) that interferes with classroom performance. Yet he is also very bright – above average reading and math scores. In first grade he was in an “accelerated classroom”. This year (third grade) he is in danger of being held back. He does not belong in a special ed class but does not function well in his large (28 kids) classroom. He need a small class setting, alternative teaching methods, breaks between sessions, and special behavior management techniques. The Board of Ed sees his IQ and test scores and says he belongs in a normal classroom. His school and his teachers say they can’t manage him and that he is is non-conforming, oppositional and disruptive. I can’t pay private school tuition. I can’t afford a lawyer either, but I may have to. He is failing, and this impacts on his emotional state – which of course has led him to give up on school.
It is unacceptable that parents have to fight for a good (appropriate) public education for the children of this county (disabled or not). This country needs to start taking a look at it’s priorities. You can’t have “No Child Left Behind” in any context with the current cuts to public education. No matter what the reforms, good schools cost money – an unassailable fact

As an educational specialist and National Board Certified Exceptional Needs Specialist with over 30 year of special education experience, teaching, administrating, developing, etc., I can safely say the the special education services that our schools provide today are horrible and not effective. The political pendulum has swung from segregation to inclusion, in most cases with no training or support, from functional skills to academics and testing. Good teachers have become paper pushers trying to keep up with the changes in the mandates. The real work of education has been lost for everyone, teachers and students included. The system needs more resources and more common sense to meet the needs of students and families. American Educational systems are appalling.

They feel that a parent’s role on the IEP team is to say yes to the “real” experts. Every meeting is a battle because of this disrespect, but at least I know what to fight for.

Unfortunately, this comment fits my experience. I wish I could say otherwise. Mostly, I feel patronized and manipulated. I break the budget for expensive evaluations because the school’s are so dismal and the recommendations would clearly do more harm than good.

We have fought for services for our Asperger’s son for approximately nine years, through two different school districts, one in California (the richest state in the country) and one in New Mexico (one of the poorest states in the country). What we have found is that how you are dealt with and what kind of services your child ultimately receives are HIGHLY dependent on the school district and what they have decided in advance they will do. The CA district did everything possible to avoid giving our child ANY type of service. Their representatives would “forget” meetings, we were lied to by the school psychologist, they would somehow not administer crucial tests which had to be rescheduled months away – it was an on-going nightmare. We hired an advocate, and eventually received some services, but not what we had requested. We also thought we had done all our “homework” – we came armed with not one, but two evaluations done by well-respected Bay Area developmental pediatricians – the district refused to even look at these evaluations, they would only use those evaluations made by district personnel. It was such a transparent, concerted ploy to avoid and delay providing services that it should have been treated as a criminal offense.

In sharp contrast is the experience we have had in New Mexico, in one of the largest school districts in the country. These folks are concerned, informed and professional. They too did their own extensive evaluation, then all evaluators sat down with my husband and I and explained their findings, and the entire IEP team sat down and with my son’s best interests in mind, we all wrote his IEP together. The process was so different from CA – it was a collaborative effort, not a contentious pitched battle!

My point is that the federal guidelines established by IDEA should be followed the SAME WAY by every school district, and there should be a federal agency to which parents should be able to report non-compliance. Until such a watchdog agency exists, school districts will do exactly as they please – sometimes to the detriment of the students they are there to help. And unfortunately, these kids don’t have the time to wait for help…

They feel what was said above, that a parent’s role on the IEP team is to say yes to the “real” experts. Every meeting is a battle because of this disrespect, but at least I know what to fight for. But when it comes down to Schools saying there going to act on curtain teaching aids and equipment and give smoke screens about how well a child is doing and finding out later that after the I.E.P. nothing changed, after all the school knows that some kids when asked daily how and what did you do in school do not answer with any detail except to say very little about how the program is going , the kids just are being left out and the school comes off saying and not doing.
In our situation after being screwed around for 3 years in the same district a special ed teacher told us about the financial end of how this school works and about 6 months later she was forced into retirement, im so angry, well I had a good paying job in that community but after all that BULL and lose of my child’s education we move outside the district by a 1 mile and found a very good school for special needs kids and its been 7 years now and working out great,bad part is I was terminated from my job for moving 1 mile outside my employee contracted residency requirements even getting an OK from the BOSS, 17 years of service to my employer spotless record, it seems in this country education for families with disabled children equals WASTE, I worked for a local town and the school was within that town, I guess I was to loud with having our child’s needs being taken seriously so I was punished and have been in and out of work for 7 years now, but the money problems are bearable knowing my child’s getting a way better education 16 miles away in a different school district, talk about turning a family upside down, and conspiracy between the ranks its embarrassing to of been born and raised in that town for 43 years

I am occupational therapist who has provided services in NYC public and private schools for years. I work as a contract therapist via excellent agencies.
This year the DOE is asking agencies to send therapists into schools that have been serviced with RSA therapists, who are private, more costly, therapists who the regs. permit to service the mandated students only if no therapist is available for their school. It is actually preferable for students to receive OT int he school iself, as there is the opportunity to meet needs directly via working with teachers and other disciplines to specifically address issues as they present at school.
I and others are running into the schools resisting the change from the RSA services despite a therapist being available to them directly, requesting the change not happen, and being able to get what they want, which is not to have to bother with the therapist being assigned to their school during school hours. This is not as it should be, and is generally not best for the students. What to do?
Althea