I need help finding my son an advocate

I’ve found over the years that many parents simply do not know or understand their rights as parents of a special needs child. Some of the information I’ll touch on may be a repeat for those parents who are actively involved, but perhaps it will be of some use for those parents who are new to the system, reluctant to use the system, or simply overwhelmed.

Currently I reside in Minnesota but I was schooled in Mississippi for my undergraduate work, and worked in the educational system in Arizona for years before moving up to Minnesota. As a parent I’ve resided in Illinois, Mississippi, and Texas. As a student I grew up in Montana, Illinois, and Wisconsin with visits to my father in Virginia and Indian. So, I’ve covered quite a bit of the country in terms of my own educational experience, my children’s experience, and in my actual teaching post. I’ve not been to all fifty states mind you, but I do feel I have a pretty good understanding of just how the system works. Though I will be the first to admit that it is a pain to go between states, and that the system in general is in dire need of being repaired.

The first thing I suggest to parents who have a special needs child is that you familiarize yourself with the I.E.P. process and the document itself. Yes, I’m suggesting that you actually know the process from start to finish in your state, as well as the document. Some may ask why should I the parent be the teacher? My answer is because this is your child and no one else will take your child as seriously as you do.

Now, there are wonderful websites out there to help you with knowing what one should ask though I agree that if you are really overwhelmed you may wish to find an advocate who is more familiar with the system. Here in Minnesota we have the Pacer Organization (see previous post on special education links). Most states have such groups and believe it or not you can find them listed on your State Department of Education website under special education. You can also do a search on the Internet for special education advocate groups in your state.

Do not allow yourself though to fall into a poor attitude though regarding special education services. There is no delicate way to handle this so I’ll be candid. I understand that culture has much to do with why some parents do not feel their child need special education. If this early intervention can help them in the long run one should consider it as help and not a hindrance. It is an old wives tale that one in special education always in special education. The fact is we want all children to return to the regular education program as soon as they are able. Our goal in special education is to bridge that gap, not keep them behind. Now, this brings to another myth. There is an old myth still quite prevalent that states we do not want children in special education and do not wish to spend monies on them. The truth is districts receive monies each year for students in regular education and special education. Special education students are actually allotted a higher amount. This said, you’d think more districts would want to classify everyone as special education, right? Well, that’s just not quite the case. There is guidelines set up in each state that determines the percentages of special education students that each district and each school should have based upon population. In this field of education the goal of all special education is to put themselves out of business. We don’t want to see every child non-progressive, we want to get them up to speed and working with their disability so they can function in the real world outside of school where they will not have access to specialized programs. Our goal is to help them be successful after our program, not just while in it, and the sooner we do that the more successful the student will be. If we labeled every student with some sort of disability under special education we’d have to question what was wrong with the community. Meaning, if we had a class of students who all had a learning disorder that would be a special education enrollment of 100%, something that scientifically defies the laws of averages in the genetic structure of humans. The averages for the year 2006-2007 across the United States were as follows:

LD-44.6%

SI-19.1%

OHI-9.9%

MR/ID-8.6%

ED-7.5%

Autism-3.7%

MD-2.2%

DD-1.4%

HI-1.2%

OI-1.0%

VI-.4%

TBI-.4%

Deaf/Blind- (falls under 0% at 1,472 total of the population)

(http://en.wikipedia.org/wiki/Special_education_in_the_United_States)

This does not mean by any means you should not advocate for your child. However, it does mean you need to do your own research. Know what your child’s disability is all about. (This of course being if you already know, because getting into the program is different from dealing with the existing diagnosis). The best way to have a child evaluated is to call for an evaluation. Know your districts policies though before you call. If you can use the same lingo that your school district uses and understand the process you’ll be met with less resistance then if you go in with an attitude.

So, let me address this as both parent and educator. It is understandable that when our child is having struggles we want to rush in and fix it. That is the natural part of being a parent. However, when you are on the receiving end of a parent who is not researched, argumentative, and not responding to anything you wish to do to help their child it is almost impossible for anything to be done. And who pays the price? The child. If you want to be there for your child, do the research. So, let us speak about this as if you already have been involved with the program and want the I.E.P. used. You need to know what those accommodations are and what modifications are that are going to be used. Attending meetings as mentioned is important. If you do not understand something ask. I’ve met parents who aren’t comfortable in certain subject areas but were willing to come to me or another colleague for a bit of tutor time in them. Take an extra class if you need to, this is your child we’re talking about. The educational process does not stop when that child leaves the school. I’ve had parents in the past that had a young student with reading problems. Their belief was that we should fix it in the special education program. So, it was suggested that parent spend 15 minutes a day reading to their child. The answer was they were too busy to be bothered, it was our job. It is a two way street. Don’t be that parent who wants everything done for their child but isn’t willing to do a bit of work as well.

Each parent is given a pamphlet of procedural safeguards an each I.E.P. meeting where the I.E.P. is being changed or edited. If you do not accept it do not blame the district for not knowing your rights. Each district is mandated to give them out by federal law. If you are not offered one, ask for one. They are available in your native language so ask for one that you can read, and then read through it. If you are confused about the language of special education ask your advocate to help you understand it.

Do not assume that because our goal in special education is to move your child out that we are not doing our job. Your goal should be as a parent to have your child out of special education as well. Teaching your child how to be a self-advocate is also something you can do as the parent. It will teach the child about their disability and how to advocate for them, something each person should learn. In Minnesota we have a program through the Institute on Community Integration that works with this. I heard a young man speak last year that had entered his senior year of high school, took his mom off his I.E.P. and handled it he. He chose what accommodations and modifications he needed, and interestingly enough he took many off because he felt they were hampering him. He actually was making A’s and B’s with less then more and felt that he was in control of his life and his goals.

Now, in the case that you feel you indeed have a legal case the best thing to do is find an attorney that specializes in educational law and in particular has expertise in special education. It does you no good to have someone who doesn’t know the first thing about what is acceptable and non-acceptable where your child’s I.E.P. is concerned. Where the law is concerned you need to make sure you have documentation. This doesn’t mean just the last few conversations; it means your child’s entire special education program. You need to start documenting from the very beginning. So, this is a suggestion for those just starting out with a child in special education. Create a notebook just for your child. Divide it into sections marked Referral Process, I.E.P., Meeting Notes, Evaluations/Tests, Outside Services (Medical, Psychological, etc), Grade Reports/Teacher Reports, Phone Logs, and Research. You may find you need more specialized notes but this will help you start. Record everything for your child in each section. This binder will become your lifeline as you move through the process. Meaning, if you keep up with the basic information all the way through the process you’ll be that much better off if a problem should ever arise and you’ll have the documentation to prove it. Think about how many times on your own job it has occurred that you had a phone conversation with someone, didn’t document it, and later it came that you need to prove what was said. This is your child’s education so the more you have the better. The section on research will be your area as a parent looking into strategies, methods, etc. Do not be fooled into thinking that is all of the school’s responsibility to find out what works. They do not know your children as well as you do. Let me give you an example. I had one student that I had a difficult time getting to do her homework so I tried my usual methods of behavior modification until I’d exhausted the tool bag I had. I finally approached the parent for ideas and it was the student herself who had the solution. I always provided my students with 15 minutes of class time to work but for her there was too much stimulation. She asked if she could sit in the alternative desk that I used for a break space just during my class. She said not being able to look at her classmates would help her focus. Indeed it had because after that I didn’t have any more homework issues. You can help the teachers provide an even better environment if you can bring to the discussion table things that work at home and things that do not work. Now, if you have done all on your end and decide to sue a school district beware there are consequences. Simply suing a district isn’t always going to mean the end of whatever issues you may have been having. I find that the best strategies are those where compromise are met, or at least those that have both sides working toward a solution rather then a nasty law suit. Not that they are not warranted but they should always be the last resort. Know that a lawsuit may create resentment, especially if those involved feel they were doing their best, and a lawsuit may find you on the end you don’t wish to be in. The judge may very well find out that they did everything for your child and that there is no case. This leaves everyone resentful and less likely to go above and beyond because you were not willing to work with the district. So always look first to work with the school before you decide to bring in an attorney.

The question always arises who should pay for services. Well, the answer is that in most cases the school is responsible. However, there are things that the school is not responsible for so make sure to check with your particular state to find out just what is covered under FAPE, and IDEA and what is not. There area I dealt with is alternative education. The school district that decides that the least restrictive environment is not at the traditional school must pay for the student to attend that school, but that does not always cover transportation. That does in some states fall upon the parent. It is best to know this before making an agreement and finding out it was not in the best interest of the child. Again, you know your child, but do keep in mind there are other students attending a school that need to be considered as well. It is not fair to those students to have a poor learning environment because of one child. I’m a parent and I know that at times I have wanted only what I wanted for my child without considering this, then I became a teacher and found out just how important it is. Some students simply need another environment in which they can learn so that their other classmates can learn as well. It doesn’t mean that your child is a “bad kid”, it means that they need something that works for them.

The best piece of advice I can give you is to form relationship with the school and those that work with your child. It creates a much better learning environment for all those around. If you are the type that constantly goes on the warpath so to speak you’ll find yourself with few allies. Be proactive, not reactive.

List of Resources for Special Needs Parents

(There are many like this on the web, these are but a few)

Planning your child’s I.E.P. program: Some Suggestions to Consider

http://nfb.org/legacy/fr/fr7/frsp0214.htm

The IEP-Your Child’s “Tailor-Made” Education Program

http://www.wpic.org/iep.htm

Your Child’s Individual Education Program: Your Blueprint for Services

http://www.familyconnect.org/parentsite.asp?SectionID=72&TopicID=346&DocumentID=3957

Attending Meetings to Plan Your Child’s Individualized Education Program (IEP)

http://www.ldonline.org/article/19795

Institute on Community Integration

http://ici.umn.edu/

A friend sent this out and gave me permission to post it here. Thank you Dee.

In response to so many messages and comments about schools, I wanted to address some of them in a blog so everyone benefits from it as well. I know I post this kind of thing a couple times a year at the least, but it's an ongoing battle and something we as parents need to be aware of.



First of all, if you do not have an advocate for your child who is on and IEP, please get one ASAP! As I have stated so many times before, you would be blown away by what the schools CAN actually do and how much IEP funding they are receiving PER CHILD. I know because I have been there! I have been to meetings and we sit and pull straws as to what to do until the very obvious feeling that the school is giving up on your child overwhelms you.

If I only knew then what I know now, my son would not have fell behind! When the district acts as if they have the child's best interest at heart, yet are doing nothing to accommodate to their Individualized Education Plan, what is that saying about the district? It's all about money, this is true.... But these schools are funded through the government based on the disability, severity of the child. The school administration does not want parents to know this either! Trust me on this.

It's not the teachers, it's the administrative, the "business" end of the school. Your teachers are in a catch 22 so to speak.. They know what's best, yet they cannot put their jobs on the line. The information that I have been told by not one but several teachers and school staff over the years, all in "secret" would blow your mind away. Finding my own advocate was the best thing I ever did. I have actually had a principal try to silence me for giving this information to another parent in the school only weeks ago. As I touched base with my own advocate, I was informed that I was very correct and she was 1. mislead or 2. shutting me down. If you wish to know the exact amount a school district is receiving for your child and a generalized view of where it's being spent on your child, YOU HAVE THE RIGHT TO KNOW THIS! You can get it through the department of education! It's your right to know and no school will tell you this.



My advice? Stay focused, keep mental and written notes of everything, never let the school put anything back on you! It's THEIR responsibility to educate your child!! That is your child's legal and entitled right, to receive a proper education! Do work with them, but use common sense within reason. Know your rights and the rights of your child. If you feel the walls closing in, call a meeting. Bring your advocate to the meeting, not an advocate appointed through the school district either.. They work for the schools best interest, not your child's. So make sure your advocate is a good one and from an outside source.

I can help you find an advocate in your area or you can contact www.autism-society.org to get in contact with the Autism society in your area, who will assign an advocate to you.



Sometimes we as parents need a backup of force to make things happen for our kids. You are your child's biggest advocate! No one will fight for your child harder than his or her own parents! I have read some true horror stories from some of you about some schools. First, get an advocate then in the most extreme rare cases, if need be get an attorney who specializes in special education and IEP laws. I have quite a bit of information on the ugly side of this as well considering my own sister about sued her sons district and was informed by her advocate she had a sound case on that specific issue. Needless to say, the principal of that district lost their job and the school was fined heavily through the department of education. Things have since worked out for her. Some will fight you harder, but most fall into line rather quickly when you bring an advocate to the table. Don't wait until you start having trouble, bring them in when all things are "good". You deserve that back up.



One other thing, if your child is on and IEP and you transport your child to school, something many parents do not know is the school district must pay you for your travel to and from school for every day your child attends.


Anything your school puts on YOU that pertains to the child's education and is based in the IEP, they MUST reimburse you so keep your receipts. And do know that by law, you do not have to cater to the school when they are requiring something of cost. When something is worked into a child's IEP plan, it's the schools responsibility to pay for it. Of course they would like to push it off on you.... But they owe you if they do.



When the school becomes to desperate it shows. Because they become overly dependent on the parent to change any problems with that child. However, it's their responsibility to FIND SOMETHING that works, if that means restructuring the entire program designed for that child, then by law they have to. They have to find something that works or they must hand over funds to other sources of education that can help. If you don't have an advocate, they will convince you otherwise. The goal is not to trash schools, some of these districts are Excellent districts for the typical child, so it's not about degrading schools. It's about making them do what they are required to do by law and the facts are schools are ran like a business, if money is involved they will become greedy. Your child on an IEP is bringing a nice chuck of cash to that district, so they need to use it for YOUR child.



If you need help or more information, I will do my best to help you out. But I advise you, get an advocate!!! Save yourself the headaches... You will be so grateful you did! :)

Have a great day!