Advocating For Your ADD, ADHD Child

Judy Bonnell, host of The Parent Advocate website, has 40 years of experience and knowledge to share when it comes to parenting and advocating for ADHD children. This conference is for parents of children with ADHD, ADD.

David is the HealthyPlace.com moderator.

The people in blue are audience members.

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Conference Transcript

David: Good Evening. I'm David Roberts. I'm the moderator for tonight's conference. I want to welcome everyone to HealthyPlace.com.

Our topic tonight is "Advocating for your ADD, ADHD Child". Our guest is Judy Bonnell, owner of The Parent Advocate website here at HealthyPlace.com. If you haven't been to her site yet, I encourage you to do so. There's a lot of information there.

So everyone knows, Judy has over 40 years of experience parenting and advocating for her children with ADHD (Attention Deficit Hyperactivity Disorder) and helping other parents deal with the system and understanding their child's education rights. Over those years, she's picked up a lot of knowledge about how "the system" works and how you can make it work for you. You can read her story here.

Good Evening Judy, and welcome to HealthyPlace.com and thanks for being our guest this evening. I can't tell you how many emails I get from parents who are either frustrated or dejected and feel like they've run into a brick wall when it comes to getting help for their children. Why is it so darned hard to get the health system, the school system, and others to work with our ADD, ADHD children?

Judy Bonnell: Good evening. It is indeed a pleasure to be here. If I had an easy answer to your questions, we would indeed have healthy well-educated children. But I find politics and money are often the overriding factors in these services. It will be a fine day when a child's needs are most important.

David: If you had to summarize, what would you say are the one or two more important things parents should know when it comes to advocating for your child?

Judy Bonnell: Document, Document, Document. Write lots of letters of understanding. Explain what you want and what you have been told by school personnel. Be polite but thorough and keep copies of everything.

David: When it comes to school issues, would you say it's better to go through the chain of command, or would you go straight to the top to get your problems resolved?

Judy Bonnell: By the time parents realize they have a serious problem, the teachers and, usually, the principal are aware. If so, go to the special education director. Principals do not actually make special education decisions but are sometimes a member of the Individualized Education Plan (IEP) team and have input.

David: So, keeping well-documented files on your attempts to get help and what's been said to whom is very important. What about a parent's demeanor in dealing with the school personnel. Should a parent be tough or condescending, or what would you suggest?

Judy Bonnell: That is such a hard one! I was always Jell-O at my own son's Individualized Education Plan, IEP meetings. But if parents take a Parent Attachment and have their concerns on paper, it is much easier.

David: We have some audience questions, then we'll continue:

KK: Yale University Medical Center has strongly recommended that my 7 year old daughter have an aide in the classroom. We live in Florida and I was told "that is not how we do things down here." North, South, East or West should not make a difference. What is the criteria for obtaining an aide?

Judy Bonnell: The need actually. Anytime someone tells you something that sounds off the wall, ask them to please put their position in writing for you. Also, if it is district policy, it has to be in writing.

KK: They said that an aide is only used for short-term issues and since my daughter's need is long-term, she wouldn't qualify for an aide. Isn't an aide less restrictive than 2 hours in the resource room?

Judy Bonnell: I would ask for that position in writing! I bet you don't get the same response. Any aide is only as good as the support and training he or she gets. If utilized in regular education setting, then teachers need support and training also. You are entitled to ask for that.

David: So what you're saying is -- school officials, etc. can say anything they want, and they expect parents to take that as "gospel," but that doesn't mean it's so. So it's important to take the initiative and go through the written school district policy book and check it out yourself.

Judy Bonnell: The written word is your most important ally. Learn to use it all the time. You can afford to be polite but as firm as necessary when you make people accountable on paper for their words. Also Letters of Understanding give people the chance to correct any misunderstandings.

And yes, David, it is wise not only to get district policy but a copy of your state's regulations for special education.

teresat: How can parents obtain information such as written school district policy books?

Judy Bonnell: Such information is public record. I would ask for a copy of any policy that you regard as strange. Just ask for it in writing. They have to give it to you.

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David: What about the idea of bringing an advocate with you to school conferences and meetings with officials. Would you advise a parent to do that? And, if so, where does one find an advocate?

Judy Bonnell: It is always wise to bring family, a friend, and most especially an advocate. Every state has Parent Training and Information Centers that provide parents to assist parents, and also advocacy training. They are funded by the U.S. Department of Education and their services should be free. It was such a parent who originally assisted our family and who trained me.

David: And the function of the parent advocate, is it to "speak for the parent" or to act as a "witness" to what is being said and what's transpiring"?

Judy Bonnell: Ideally, the parent speaks for the parent. In real life, parents who have experienced only failure are often in extreme duress when I first get involved. So I assist only as much as the parent desires. Once they learn how to take everything in writing to the meeting, they start gaining self-confidence.

David: So, it's more of someone being there to show you the ropes until you feel comfortable doing it yourself. How do you find the Parent Training and Information Centers?

Judy Bonnell: The parent organization is PACER (Parent Advocacy Coalition for Educational Rights) and it is easy to find on the web. They will list all the sites. They are in every state and are there for the families.

David: My guess is you can also call your county and/or state board of education and they can point you in the right direction.

Judy Bonnell: Every State Department of Education is mandated to work with these centers. They should make available the information also. These are the people to ask for a copy of your state's special education regulations.

I cannot emphasize enough the importance of knowing the law that directs your child's education if he or she has special needs. Believe me, the local school administrators have the regulations practically memorized. You should be equally informed. The law was written to protect children, not written for the convenience of school districts. But often that information is not easily available to parents.

David: What kind of things should a parent expect the school district to do, to accommodate their ADD, (Attention Deficit Hyperactivity Disorder) ADHD child?

Judy Bonnell: First of all parents need to understand that not all children with ADD/ADHD qualify for assistance. If children just need minor help, such as shortened assignments, less homework, oral testing, etc. they can get that with a 504 plan. If they need big-time help with services they should qualify for IDEA which lets them have an individualized plan. IDEA means Individuals with Disabilities Education Act.

We are talking two different laws. 504 is a civil rights law. It says all children with disabilities will have access to the same things as children without disabilities.

David: Let's get to some more audience questions Judy:

chemcl: I have a son with adhd. For the past 5yrs of dealing with the school board and Individualized Education Plan - IEP teams, it took forever to get my son in the right setting. My son's self-esteem was in jeopardy also. After a long 5yrs of public schools (three different schools to be exact), I felt my son was not getting the education he so deserved. My question to you is, how beneficial are private schools for adhd children? My son will be attending this fall. This is a big cost factor, but after dealing with the public school, this was my only solution, to put him in a private school.

Judy Bonnell: It depends on the school. Some schools are geared to meet the needs of children with learning problems. Some schools are very conservative and the emphasis is on strict regimentation. So it depends on the individual child's needs. I would look for a school, public or private, where the emphasis is on a child's strengths.

teresat: What tips could you give to a parent who works with an advocate and school officials become intimidated, thus causing a defensive relationship instead of a working relationship?

Judy Bonnell: School officials who are easily intimidated are usually school officials who are either uninformed as to what they must do, or they are in personal ivory towers and have a great fear of losing control. A child in need cannot afford such an attitude. What must happen is to put aside other considerations and focus on the needs of the child and what teachers need to be successful with that child. When that eventually becomes the focus, and it will with effective advocacy, everyone ends up a winner and a smiler :-)

Special education is rapidly becoming a team effort. There is no room for people who are uncomfortable with that. Those people seem to be leaving the profession as it is too stressful for them. Ask for a full educational evaluation including executive functions and do it in writing. Then, if they still deny services, parents can ask the district to pay for an independent evaluation by a neutral party. But they must let the district test first. As always, request it in writing and they must meet a timeline to complete it. It varies state to state as to the timeline. When you make a request, always ask for a reply within say 10 or 12 working days.

David: Sometimes, it helps to be complimentary to the teacher or school officials when things are going right. Also, if you are educated yourself on what's going on and what the law is, you can then say "I came across this article, or whatever, and thought you may find it helpful". That way, you're educating the school officials without coming off as combative.

starLyon: How can you get help for a severe ADHD gifted child if the school says he's doing fine? Does a child have to be failing to get assistance?

Judy Bonnell: Again, ask for that evaluation and also testing for gifted. Being gifted does not let the district off the hook for services! In fact, doing just so-so is not good enough for a gifted child. Don't ever let them determine services just on an IQ score either.

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Pat B: What do you do when a special education coop continuously has a power struggle and forgets what the needs of the child is?

Judy Bonnell: You write that Letter of Understanding. State what you understand that is not happening, that should be happening. Ask for a meeting and state the expectation that district recommendations and denials of your requests be in writing as required by law.

Nadine: I was told my son has inattentive type ADD (Attention Deficit Disorder), however, he is at the top of his class and he has no behavior problems, so, therefore, the school will not step in and help. So it will cost me over a $1000 to have a full evaluation done here in Canada.

David: Is there anything she can do, Judy, to get the school district to help with the evaluation?

Judy Bonnell: Not all children with Attention Deficit Disorder, ADD, are going to need services. I don't know about Canada, but in the U.S., there must be problems in learning. As I say, I don't know Canadian law. She needs to get a copy of her law and see what it says about evaluations. Always learn what the law is that covers your child.

David: Even though some parents may like to, most can't afford to hire a lawyer and fight the system. When do you think it's time to throw in the towel and seek legal assistance in getting your child's special education needs met?

Judy Bonnell: The problem with due process and lawyers is that it can drag on for years. It can also irreparably damage relationships. In any case, parents should start building that all-powerful documentation because a lawyer will bless them for it!

I have found the Office for Civil Rights very helpful in many instances for ADHD. And they provide their own lawyers when necessary. That's how we won our class action suit for children in New Mexico.

David: Yes, I imagine that because of the slowness of the legal process, if you start with lawyers while your child is in 5 grade, by the time that issue is resolved, your child is a college graduate :)

Judy Bonnell: Not always. And we have some very fine, caring, advocacy lawyers. Just depends on the circumstances.

ikwit1: My husband and I spoke to a school psychologist to develop a 504 plan for my daughter. She had numerous educational testing. The problem is that the psychologist would not put certain interventions in the plan because she didn't know if the next school would follow through with the intervention. The psychologist wouldn't allow a few interventions that we wanted.

Judy Bonnell: I think the psychologist went far beyond her authority. Such decisions are team decisions and should be based only on a child's needs.

David: What should she do Judy?

Judy Bonnell: I think you would have a good issue for the Office for Civil Rights with that one. First I would get the psychologists position on paper, of course.

iglootoo1: I was told at annual review that my ADHD, Learning Disabled, Gifted 16 year old would not be entitled to accommodations in an honors history class according to the State (NJ). He has an IEP (Individualized Education Plan). Since he was only recently diagnosed and trying to come to grips I am considering an attachment to IEP sent to all his teachers. What do you think?

Judy Bonnell: I think I would write a letter of complaint to your special education director and tell him/her that you believe your son's civil rights are being violated by not making the necessary accommodations. I do recommend parents look ahead and see that such recommendations are in the IEP long before testing is due.

You might also ask them why the SAT is given with accommodations but a local class will not make accommodations?:-)

David: I want to thank Judy for being our guest tonight. We appreciate you sharing your knowledge and experience with us. And I want to thank everyone in the audience for coming and participating.

Judy Bonnell: It has been a pleasure David. Thank you for inviting me.

David: If you haven't visited Judy' site, The Parent Advocate, I encourage you to do so. There is a lot of very useful information, sample documents, and links to sites related to issues discussed above that you can use. You can also check other sites in the ADD/ADHD Community.

Good night everyone.

Click here for a list of conference transcripts about ADD (Attention Deficit Disorder), ADHD (Attention Deficit Hyperactivity Disorder) and other mental health topics.

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