Advocacy Tips

Leslie Packer, PhD
Tuesday, August 23, 1994 12:15:08 PM

I was asked to generate some tips on successful advocacy. If you are the parent of a newly diagnosed child, or a child who has been diagnosed for a while but is first encountering difficulties in school, here are some pointers that may help you get started:

1. Set up a filing system, if you haven't done so already. Don't set the files up by subject. Keep the records chronologically. Save even anecdotal reports about your child from the teacher(s). If there are any behavioral problems reported or suspensions, be sure to keep copies of these too. While we would all dearly love to forget about some of these notes or problems, they may help demonstrate that your child is in need of special educational assistance.

2. Keep copies of all notes you send the school or district personnel. Keep their notes and correspondence to you. Make sure that each piece is dated.

3. If you send the district anything official, mail it certified, receipt requested. I used to mail mine registered, but a postal worked tipped me to the fact that even that can get lost!

4. If you have a conversation with school or district personnel about your child, send a note or letter the next day confirming the gist of your conversation. It could start off, "Thank you for calling me yesterday about.... As we discussed...." Make sure your letter is dated, and of course, keep a copy in your files.

5. If you find yourself having arguments with the school personnel, back up and look at your style. Are you personalizing the issue? Is it becoming a war about your rights vs. the school's? One way out of this problem is to keep the focus on the child -- not the teacher and not you. Talk about what your child needs and relate it to his/her disability or disabilities. For example, "Johnny has a lot of trouble organizing himself to record his assignments and pack up the books and materials he needs to go with them. I understand that this is very common in children with ADD. Can we develop a strategy for school and home that will help him get better organized?" Teachers are more likely to cooperate if they are positively engaged in the process and feel that they have generated the ideas or have developed them cooperatively with you. Don't forget to thank the teachers who really are trying to help your child. Sometimes we forget, and everyone appreciates a pat on the back now and then.

   Obviously, not all teachers are wonderful, and not all teachers will be receptive to this approach. However, there is truly nothing gained in the early stages by being adversarial. I never blamed my son's teachers for his problems, and by sharing our frustrations and ideas, I usually found that we had developed a mutually supportive relationship.

   Consider offering the teacher(s) or school personnel professionally prepared material on your child's disability. Major organizations such as ChADD and TSA have literature available written especially for educators. If your child has a disorder such as Tourette Syndrome, contact your local chapter to see if they have a speaker's bureau that can provide staff developments for educators. I have always found it helpful to let educators know where their resources are so that they can arrange for further training or consultation.

   Encourage your child's teacher(s) to communicate directly with your child's treating physician or psychologist. You will need to give them a legal release to speak with each other.

6. If things start to become really difficult, still keep the focus on the child's needs. If you are not getting the cooperation you need from the teacher, or if you feel that the teacher needs more support from her/his administrator, write to the principal and request a meeting with both of them (consider asking the school psychologist to participate as well). At that meeting, keep the focus on the child's needs and try to generate a problem-solving approach. Follow up on the meeting with a confirming letter (and keep a copy in your files). Again, it doesn't hurt to thank people for spending time trying to problem-solve with you, etc.

7. Ask your child's treating physician to prepare a detailed report on your child, giving his/her diagnosis(es), identifying the symptoms, and explaining how they impact on school functioning, including academic, social, and psychological functioning. Some physicians are more than willing to provide specific recommendations to the school as to how to manage the symptoms.

   Send a copy of the physician's report to the school with a cover letter. You can send it to the principal, and request that s/he share it with the child's teacher, or you can cc the teacher directly (a strategy which I personally prefer). Unfortunately, some educators don't give much credence to a parent's recommendations, but may be more receptive if it comes from a treating professional.

Sometimes, despite our best efforts, we do not achieve satisfactory results when working with the building team. If you have come to that point, and the building team suggests evaluating your child, you will have to decide whether to allow them to evaluate your child or if you will arrange for outside evaluation. Do not just ignore their suggestion, however. When parents appear uncooperative or don't follow through, it makes things more difficult later on.

If the building team doesn't suggest evaluating your child, and you feel that you have exhausted your options on the building level, you should seriously consider referring your child yourself to the school district's Committee on Special Education and 504 Committees.

At this point, you might want to call your State Education Department and ask them to send you a copy of the parent's handbook about special education. Copies of this handbook are also available through your school district's special education office. The handbook will answer a lot of your questions about procedures, etc.

A word of caution: many educators are not familiar with or knowledgeable about an important piece of legislation known as Section 504 of the Rehabilitation Act. Even the parents' handbook for your state may not discuss it. Section 504 has a broader definition of who qualifies for assistance, and children who may not qualify for help under one major piece of legislation, I.D.E.A., may qualify for help under Section 504. You can request a copy of Section 504 from your school district's office for special education.

Because many educators are not knowledgeable about ADD, ADHD, Tourette Syndrome, etc., they may be looking for the wrong things when they evaluate your child or interpret your child's performance. Many parents have had the experience that their child is evaluated by the school psychologist or resource room teacher, and they are then told that their child doesn't qualify for help because academically s/he's on grade level or there's no 50% discrepancy between the child's potential and their actual achievement.

If you are being told this by school personnel, don't bother arguing with them or trying to educate them on the law. Refer your child to the district's Committee on Special Education. In your letter to the district, tell them that your child has a medical disorder which you believe has affected their ability to benefit from their free appropriate public education (FAPE), and that you would like them evaluated for either an IEP *or* a 504 Plan. Enclose the letter from the treating physician. If your child is academically on grade level, but is having problems in the areas of functioning typically impacted by ADD or ADHD, you might include a statement to the effect that you are not looking for classification under the Learning Disabilities category, but understand that children with your child's problems may be classified as Other Health Impaired, or that s/he may qualify for a 504 Plan.

If your child has significant handwriting or motor problems, mention in your letter that you have observed these problems and will send them a prescription for an occupational therapy evaluation under separate cover. Then, contact your child's physician and ask him/her to write a prescription for the district to evaluate your child for occupational therapy. Send it with a cover letter to the district.

Send your letters certified, receipt requested, and of course, keep a copy in your files.

Do not worry too much at this time about what some of the terms in the paragraph above mean, such as IEP, 504 Plan, FAPE, etc. They have legal significance, however.

After you refer your child, you will be contacted by the district to sign a consent to evaluate. You should respond to this request, but you may wish to arrange to have the comprehensive evaluation conducted by outside professionals at your own expense. Under some conditions, the district may give your prior authorization to have the child evaluated privately at public expense, but that is the exception rather than the rule, and they usually don't offer it -- you have to request it. The parents' handbook will explain the conditions under which the district may authorize private evaluation at public expense.

For the most part, you can either choose to have the child evaluated by the district, and then request an outside independent evaluation at public expense if you disagree with their findings and recommendations, or you can have your own testing done at your own expense from the "get-go." There are pro's and con's to both strategies.

Leslie Packer, PhD
73642.2375@compuserve.com

This article has been downloaded from the ADD Forum on CompuServe, and may be distributed freely as long as the contents of the file are unchanged. Because the CompuServe ADD Forum is new, we are frequently asked how to join CompuServe and get on the forum. Call 1-800-524-3388 and ask for rep #464. Outside the US/Canada call +1-614-457-0802.

Last Modified: Thursday, October 02, 1997 9:34:45 PM