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Effective parent advocacy: how to take charge.

According to Webster's dictionary, advocacy is active support for a cause. To advocate is to speak into favor of or to defend (someone). For parents of children with disabilities, it is speaking up on behalf or your child to ensure that his or her needs and rights are met. It is often confronting authority. Sometimes, it is simply getting out there and fighting for your child's rights. Here are some tips that will help you become your child's best advocate.

On behalf of Your Child

Believe in your child. Believing in your child is essential. No doctor, therapist or teacher--no one--knows your child better than you do. You have lived with your child with a disability longer and more intimately than anyone else. Only you have the long perspective--the big picture. Trust that knowledge.

Believe and trust in your own insight and intuition. Believing in your intuition is being able to trust yourself and those feelings you have. A hunch is usually a sign. Follow your hunches.

Remember that information is power. Educating yourself in critical. You do not have to become a walking encyclopedia about disability law. But it is very important to learn what your child's rights are before you can fight for them. There are many sources of education and support in your state. There are advocates in your state--at United Cerebral Palsy affiliates, the Protection and Advocacy agency and at parent training centers. They are your allies and will prepare and support you. The more skills and information you learn the better you can advocate.

Be a change agent. The squeaky wheel gets greased. You can do it!

Advocacy Tips:

* Documentation. Keep a notebook. Always write down facts and keep a 'paper trail.' There are two different kinds of facts--objective and subjective.

Objective facts are the same, telephone number and title or position of the person you talk to. Don't be afraid to ask. Say: Just a minute, please. I need your name and title. I'm writing this down.

Facts are lists of questions you ask and answers you receive. Put quotes around answers. Ask the person to repeat themselves or say: I heard you say that you do not think Jesse can be in your day care center because he has a wheelchair. Is that what you said? Write it down. It is helpful to say that you are writing the responses into a notebook.

If you get an answer that you don't agree with, don't understand or you know is wrong, say so. Always ask for the statement to be sent to you in writing. Say: Please send me a copy of that in writing. Make this request when you are talking with educators, health care professionals, insurance companies, Medicaid, community agencies, hospitals, landlords, restaurant owners and others.

Keep a file folder, box or drawer for the written replies and paperwork you will receive. If you have time, organize it either chronologically or by subject.

Subjective facts are your personal thoughts and feelings about either a person or an event that occurred. Did the person act friendly? Ignorant? Were they willing to talk with you? Were they evasive? Just jot down a couple of words or sentences to remind you what kind of conversation you had.

Remember to keep your notes on facts and opinions in one place--either on a computer disk or in an organized notebook. This is a quick and easy way to make sure that your notes are not here and there, but easy to find. Over the years, you will see why having your notes together is a time saver.

Always date your notes.

* Phone calls. Record phone conversations in the notebook. Include the date and time of the call, along with the name, title and telephone number of the person you spoke with. Before placing the call, write down the questions that you will ask, leaving space for the answers. Realize that a phone conversation can be forgotten--or denied.

Try to talk to the 'power' person or the person who has the critical information you want. It may take a while to get to the person who has the authority to state policy, so persist in trying to reach a person of authority. Call an agency and say:

Who is the person responsible for putting together the IEP team?

May I speak with the policy expert on the Medicaid state plan?

Who determines the transportation schedule for school buses?

Who is the expert on assistive technology funding in our school district?

If you don't know what an IEP is or whether your child is eligible for Medicaid, that is the call you need to make tomorrow.

When you make a call, try to leave pleading and begging behind. Be as direct as you can with your initial request. Simply say:

Hello. This is Jane Doe calling for Mr. Sampson. Period.

My son can't see very well and has cerebral palsy. What are the steps I must take to get him enrolled in an extended school year program?

How and where do I apply for Social Security for my son who has a disability?

You do not need to explain your story or request in detail to everyone. You don't have to give the medical terminology for your child's disability. Just keep it simple and straightforward. And keep it to the facts. It can be tempting to begin to explain the ins and outs of what you've been through; however, save that for your friends, family and support groups. Deal with administrators and service delivery people in a businesslike manner.

If the person is not available, simply say: Please ask Ms. Claims Supervisor to return my call. My number is...

If a message is requested, or if you volunteer to leave one, make it strong and to the point.

I am calling about the bus picking the kids up an hour early each day.

I'm calling about my son's application into the summer recreation program.

Ask when you can expect a return call. Write that down. If you don't get a return call when you should have, call back.

Call back if you don't succeed in reaching the right person the first time. Ask: Who should I be talking to, then? If they seem unhelpful or to be avoiding you, write it down. Keep a record of these referrals and if they are passing the buck, say so: Look, I'm getting annoyed. Mr. Blank referred me to Ms. Specialist who referred me to you and now you're referring me to Mr. Blank!

If you are given approval over the phone, be sure to say thank you and ask for written confirmation to be sent to you the next day. File this with your other documentation.

* Letter writing. After the phone call, sit down and write a short letter stating that you just talked and summarizing the phone conversation. Keep it as objective as possible by stating the facts. At the top of the letter reference the subject:

"Re: Occupational Therapist Still Not Hired"

"Re: Second Request for Payment of Physical Therapy Sessions"

To give your letter real muscle, though, there's a simple technique called 'cc' or 'carbon copy' This is at the very end of the letter and it's to let the recipient know that you mean business. You 'cc' your letter to their boss or to the head of the agency that administers the program. Using two or more cc's can be useful--you can 'cc' an advocacy organization such as the nation United Cerebral Palsy Association office or the affiliate, a parent training enter, your state legislators and your U. S. Senator or Representative.

Don't worry about whether or not your congresspersons care. They do. This is one 'cc' that will do more good in the long run than any other. The people who amend, authorize funding or change the laws of the land need information from you. If there is no law or regulation, they can propose a new one. Your voice is very important. They need you to keep them informed.

* Meetings. If a meeting is scheduled at a time you aren't available, ask for it to be rescheduled. Propose an alternative time that is good for you. If you know that you are going to be late, call to let them know.

Be sure you know the purpose of the meeting. This will establish what your role is and will help you to focus on what your child needs.

Be prepared. If you are going to change the IEP, have your suggestions in writing, preferably typed, with extra copies.

Take a moment at the start of the meeting to write down the names and titles of everyone in the room. Don't hesitate to ask: Just a minute--how do you spell your name? Introduce friends or advocates who you bring along for support.

Take notes during the meeting, if you can. If the meeting is 'going nowhere' say so and propose another meeting. You may want to bring a tape recorder.

If you don't understand something that is happening in the meeting, or if emotions flare, ask for a break. Say: I think I need a break. I'm going into the hall for 10 minutes. Use the time to collect your thoughts. Avoid being in a position where you swear or will later regret words you say.

If substantial gain is made during a meeting, write a follow-up letter to everyone who was at the meeting, stating what decisions or advances you believe were made and expressing your appreciation. Send carbon copies of the letter to anyone interested in the outcome of the meeting.

* Legal Representation or Alter-nate Dispute Resolution. You can hire a lawyer later if you need to or you can opt to utilize a formal Alternative Dispute Resolution process if it's available or offered. Every state has a Protection & Advocacy agency and every county has a legal services office.

Documentation, knowledge of the facts and a feeling about what is going on are very important. You will save time, attorney's fees and personal aggravation if your records are in order. You will also know a great deal and be able to figure out if the mediator or lawyer is competent and knowledgeable about disability issues. You cannot assume that the domestic relations lawyer who you used for your divorce, for instance, also understands how special education law works, or that an appointed mediator knows what a personal assistance services care giver is.

Like all professionals you will be involved with, they are paid for their expertise and services--and it is you who hires or consults them. Always get several referrals and then "interview" the professionals, if possible, to see if you can work with them. Again, trust your intuition and observations. You can say: I'm shopping for an (attorney, doctor, dentist...) who understands disability. I'll get back to you when I decide what to do.

* Use of Anecdotes. Anecdotes are stories told to make a point. They are used to give examples. Anecdotes are a particularly useful tool if you meet face-to-face with an elected representative, are asked to testify at a public hearing or meeting or are writing a Letter to the Editor for a newspaper. People remember anecdotes. For example, if you feel that the school system is unresponsive or insensitive to your child you could talk about your child's IEP goals and explain how they are not being implemented. Or, you could say: My son Sean is in regular kindergarten. He can't talk. He uses sign language and a machine that talks for him when he pushes buttons. The teacher asked the children to bring in a favorite stuffed animal at story sharing time. Sean brought in his Snoopy, which he carries with him all the time. When it was his turn, the teacher wouldn't let him use his voice machine. She said it was disruptive and distracting to the other children. She has not learned his signs, so no one understand what he was doing with his hands. Sean stood in front of the class, silent. The teacher and children stared at him for a while and then she instructed him to sit down. He threw himself on the floor and had a temper tantrum. The teacher told the aide to take him out of the room for "time out." She then reported that Sean was becoming a problem child in her class and asked the principal to work out a behavior modification program.

A story in short declarative sentences is easier to understand than a lot of detail and opinion. Find a powerful story to make your point, and use it.

Advocacy is its own reward. And there will always be something to advocate for in this imperfect world. Accept that you cannot win all the time and that many goals may take months or years to reach. Give yourself a break now and again!

* Pick your battles. You'll have ample opportunity over the years to fight many, so choose them and space out your energy. And be creative--there is no limit to the tactics parents can choose as they advocate for what is right for their child with a disability. One parent may leaflet all the teachers' mailboxes to argue for inclusion of their child with Down Syndrome into a regular education classroom and win. Another parent may launch a full-scale litigation effort and win. Different circumstances require different actions and strategy on your part.

* Celebrate your victories. With each achievement, no matter how small, take a moment to congratulate yourself for a job well done. Have a party with your family or friends when you finally get Medicaid to pay for the specially-adapted toilet seat, when you secure SSI for your child or when you get the 'okay for payment' for an extended school year over the summer. Share the gladness of the moment when your child gets on the bus with his sister to go to the neighborhood school, or when your young adult daughter with a disability gets a job after a year of searching.

* Respect, not popularity. You'll know you are an advance when you feel like you have had to decide between being popular and being respected. In the long run, being respected will do more for your child than trying to keep everyone pleased. This might sound like we're suggesting you have to fight for everything and be combative. We are not saying exactly that. We are saying, however, that as you work to make sure your child's legal and social rights are won--because, unfortunately, they are not automatically provided or extended to your child--you will feel and act differently. And it will be worth it!

It is your right, your responsibility and your duty to speak up and out. We thank you for your efforts. We all gain when your child gains.
COPYRIGHT 1993 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1993 Gale, Cengage Learning. All rights reserved.

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Title Annotation:book excerpt
Author:Rader, Helen; Simpson, Jennifer
Publication:The Exceptional Parent
Article Type:Excerpt
Date:Sep 1, 1993
Previous Article:Residential placement: coping with separation.
Next Article:A place in the dugout: family mainstreaming in a rural community.

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