Parents, Get your Act Together . . . and Take it to School.
Become Your Child's Advocate
Parents of children with disabilities have a unique opportunity to participate in planning their child's educational program. The Individuals with Disabilities Education Act (IDEA), entitles parents to plan their child's program along with school district staff. The law guarantees parents the right to advocate for specific programs, services, classrooms and technologies that will allow their child to benefit from his/her educational programs.
Unfortunately, many parents think of themselves as "only the mom (or dad)." This perspective may come from our own failings as students or an awe of teachers developed in elementary school. Whatever its origins, most of us can still resurrect those buried feelings of being powerless when we cross the threshold into school, or heaven forbid, walk into the principal's office for a talk!
In addition, listening to school staff talk about our children in clinical and unfamiliar terms is difficult. We have so much of ourselves invested in our children: our love, our need to protect, even our own egos.
However, parents can become effective advocates for their children. Primarily we need to recognize that our role as parent is vital to the planning process. We know our children better than anyone else. We view them differently than other members of the planning team. That viewpoint is as important as the school psychologist's, speech pathologist's or classroom teacher's. In that light, the title of "mom" or "dad" takes on added significance.
This issue of TECHNOTES does not discuss IEP (Individualized Education Program)* procedures, time lines or laws because there are many resources out there to give parents that information. Instead, it identifies techniques parents can use to prepare themselves to be effective team members. It also provides strategies parents can employ to make the laws work for their child. For a list of materials about IEPs, laws, time lines and other procedures, see the Suggested Reading List on page seven.
One Parent's Story
I was what could best be described as a wimp for most of my young life. When I became a parent of a child who has cerebral palsy, learning disabilities and health problems (severe allergies), I was unsure of my abilities to meet the challenges. Initially, I wanted the doctors to tell me what was wrong with my child and then fix it. Yet, when I heard the diagnosis, I felt anger. Cerebral palsy cannot be fixed.
Over time, I realized that my daughter was the same precious blond-haired, blue-eyed beauty she was before the diagnosis. I also realized that while she probably could not do some things, there were far more things she could do. I vowed to do all I could to help her reach her fullest potential.
At that time in my life, I would never have asked for things for myself, shared my opinions or acted in any assertive manner. That would have to change if I was to be an effective parent advocate. My daughter needed someone to clear enough of the obstacles from her path that she could reach the doors of opportunity and achieve the successes that come so easily to children without disabilities.
My daughter needed an advocate and I needed to become that person. Learning new skills usually means failing at times. It's like learning to ride a bicycle. The trick is learning how not to fall off. Most of us endured several skinned knees, hands and elbows before we trained our bodies to stay on the bike.
Slowly, over time, I grew more knowledgeable and skillful at being assertive. It took study, practice, stumbling, and trying again. Through my role as parent advocate I increased my daughter's speech time and got physical and occupational therapy written into her IEP. I also worked to have her included in a regular education setting, and removed many barriers from her path.
Sometimes I failed in my role as a parent advocate, but through that failure I discovered what did not work. My daughter, too, failed at things she tried, and from failure she learned valuable lessons. We must never be afraid to try new things.
Now my daughter is 18, in college, and enjoying life to the fullest. We both learned that just because something is hard, doesn't mean it's not worthwhile.
It's not always easy becoming a parent advocate, but it is usually worth the time and effort. Parents can exercise their right to be equal partners in planning their child's educational program. It is our right, our privilege and our responsibility.
Below are some tips that a parent can use to prepare him/herself to be a better advocate for his/her child with disabilities.
Before a Meeting
Keep good notes all year long. If you speak to someone regarding your child's program, record the date, who you spoke to and a summary of the conversation. If it is a very important call, you may want write a follow-up letter summarizing the conversation.
Visit your child's school. Pay particular attention to how your child interacts with classmates, teachers and other school personnel. Be as objective as possible: does he/she sit still, get along with others, stay on a task, listen to directions, etc.? Take notes of your observations.
Review your child's school records before the IEP meeting. The Illinois School Code ensures your right to inspect your child's records within 15 days of your written request. Professionals working with your child prepare that way. You should too. You are entitled to have an explanation of the material by a qualified person; to challenge its contents by asking for correction or deletion of inaccurate, misleading or inappropriate data; and to insert a written statement about the contents of the files. You may also get copies of anything in the file. The school may reasonably charge for copies.
Write goals of your own. From your observations at home and school, and a review of your child's school records, determine one or more important goals. Write the goal so that it's attainable and measurable. (Example: By mid-semester, Dana will study at his desk for 15 minutes without bothering other classmates.) The practice will make you a more valuable member of the team. Bring your goals to the meeting and ask the team to incorporate them into your child's IEP.**
Study your rights. Read A Parents' Guide published by the Illinois State Board of Education. Review the Individuals with Disabilities Education Act (IDEA). Look over the Illinois School Records Act (Article 50, Illinois School Code). Use the material like a textbook, underlining important parts. In the back of the book make your own table of contents of sections concerning your child. Your personalized table of contents will come in handy if you need to check something during a meeting.***
Know what you want. Some parents know they are unhappy with their child's educational program, but cannot give one constructive suggestion to make it better. Look at where your child is and where you would like for him/her to be. What steps are necessary to get there? If the self-contained classroom doesn't give your child the academic stimulation he/she needs, will full inclusion and a resource room do the trick? If you don't know what you want, how will you ever know when you get it?
Find out exactly where the meeting will be. One Dad, a big man and former college football star, told a story about attending his preschool son's IEP meeting. They held the meeting in the cafeteria. Not only was it very noisy with the food service workers clanking trays and pots, but the team sat around a little table on little chairs. The noise and the uncomfortable knee-chest position so distracted him, he only wanted one thing . . . for it to be over. If you are uncomfortable with the meeting place, explain why and ask for another room . . . or for grown-up chairs and tables!
Practice using the language in our study materials. The district must give your child a "free appropriate public education" (FAPE), meeting his/her "unique" needs, in the "least restrictive environment," so (s)he can "benefit from an educational program." If parents request a communication device for their child because "it's the best thing for Mandy," a district can respond by saying "We don't have to do what's best." It is true. The federal law does not require schools to provide best services . . . it requires them to provide appropriate services. Stating it's appropriate for Mandy to have a communication device to benefit from her educational program, clarifies your intent and reduces possible misunderstandings.
Ask who will be at the meeting. You can invite others if you wish. One Mom explained that her daughter was in a self-contained classroom within an elementary school. One afternoon while talking to the principal, he stated that he had never been to an IEP meeting. Since the mom had a better rapport with the principal than the special education supervisor, she invited him to the IEP meeting. During the meeting she felt like she had an ally as part of the team. Another Mom felt overwhelmed when she learned that eight district staff members planned to attend a dispute resolution meeting. To ease her intimidation, she invited seven other people to join her!
Recruit someone to go to the meeting with you. Parents can miss important spoken information because they focus on one issue and another crops up. The other person could be another parent (not your spouse), advocate, or someone who is interested in your child. His/her function at the meeting is to be an observer and listener. Tell him/her to watch and make sure that you get all the details. If (s)he thinks you may have missed something, tell him/her to interrupt the meeting and bring it to your attention. (Example: "Excuse me, Dr. Jones did I hear you correctly when you said . . .")
Pick a primary spokesperson, if both parents attend. This parent will take the lead in conversation. When the other parent has something to share, they can give a cue (Example: Gently putting a hand on the other's arm.) And then wait until recognized to speak: "Honey, did you have something you wanted to say?" This may sound rigid, but it looks better than both parents speaking at once, or constantly interrupting each other. One of your goals is to act professional and to be courteous with other team members. In most family situations, one parent tends to take the lead with the school anyway.
Once you've done your "homework" you are prepared to attend an IEP or any other meeting and be a full partner in planning your child's educational program.
At a Meeting
Below are some hints to help you be more comfortable at the meeting itself. Remember this is a professional meeting and if you disagree with your child's IEP you have options to pursue. Hollering, crying or being angry won't strengthen your case--being prepared and informed will. Many parents have said that once they knew their rights and their child's rights, containing their emotions was easier.
Dress appropriately. Choose clothing that is as formal or informal as other team members. One Dad stated he dressed so anyone coming into the meeting could not readily identify him as the parent.
Shake everyone's hand when you enter. Smile, make good eye contact and introduce yourself. Don't wait for someone to introduce you to the team. You are not a visitor at this meeting; you are a partner. If you act like an equal partner, your chances of being treated like one increase.
Sit next to the highest ranking school person at the meeting, especially if you've felt left out of previous meetings. That position will guarantee that people will look at you. One parent tells a story of sitting directly opposite the special education director. The parent looked at the back of everyone's head for the entire meeting. Don't be afraid to move chairs, or request a different seat. You are trying to make yourself comfortable enough to be a valuable member of the team. Other team members do this all the time. You get to do it once, maybe twice a year.
Pass around a sign-in sheet. You will get a copy of the IEP at the end of the meeting. However, having a list of names during the meeting will allow you to address team members by name.
Display your special education literature on the table. The team will know immediately that you are an informed and prepared parent.
Contribute to the conversation. Your opinion is very important. The classroom teacher knows the academic part of your child; the psychologist knows the behavioral and cognitive parts; the speech pathologist knows the speech parts; but you know the whole child. If you know your child is a morning person and that test scores could differ greatly from morning to afternoon, say so!
Ask other team members to define words you do not understand. Most professionals use a "verbal shorthand" to describe tasks, tests or other activities in their field. District personnel are used to talking to one another in this language Changing the habit for a meeting is often difficult. You won't look silly if you ask. In fact, caring professionals appreciate the reminder.
Take refreshments to the meeting. It may seem silly, but setting yourself up as host can be an empowering moment for some people. They understand the role and can act within it quite effectively. Besides, the team will enjoy the goodies after spending endless hours reviewing and revising IEPs!
Record the meeting with a tape recorder if you wish. This will give you a permanent record of the meeting.
Get a copy of the IEP. Keep it with your other records.
If You Disagree
Your child could be a student in your special education district for as many as 21 years, if your district operates a birth to three program. Over that length of time, it's reasonable to expect that you may disagree with some components of your child's program. Parents almost instinctively protect their young and can become too emotional if they believe their children are missing an opportunity. Remain calm, and prepared. You have many options. Even if you disagree, you need to find a way to remain calm. The person you disagree with is a human being. He/she deserves respectful behavior, even in disputes. These tips can help you bring a dispute to resolution.
Do not sign the IEP. Some districts require a signature to prove you attended the meeting. In those cases, sign your name and add, "present, but not in approval of the IEP." Ask for another meeting to resolve the issue. If the district has to get back with you to set a time, set a date for that call. If the district personnel do not call you, you call them. Don't let it slide.
Keep to the subject. If your child needs physical therapy, don't be maneuvered off track by a discussion about how hard it is to find physical therapists. Instead, guide the discussion back to getting physical therapy into the IEP. (Example: "I know that is a difficult task, but today we are talking about Jeremy's need for therapy. We all agree he needs it, right? Let's put it in the IEP. Can you call the hospital to schedule a time for therapy, since you don't have a therapist available?")
Request an outside evaluation. You can ask the district to pay for an independent evaluation. That request must be in writing to the superintendent. Once they receive the letter, they have specific time lines to follow to respond to your request. "If the district denies your request, the district must state its reasons for the denial and request a Level I impartial due process hearing to demonstrate that the district's evaluation is appropriate."****
Even if you lose at the hearing level, you can have an evaluation conducted at your own expense (or your insurance company's). The school district must consider an independent evaluation and its recommendations at an IEP or multidisciplinary conference.
Ask to see the policy if the district states they can or cannot do a certain thing because it's the policy, rule or regulation. It's alright to make people responsible for the things they say. Remember that federal laws, rules and regulations take precedence over local laws, rules and policies. Point out discrepancies in the district's policy if you believe it is contrary to IDEA.
If informal steps fail, all is not lost. If you continue to disagree, you can ask the Illinois State Board of Education (ISBE) to mediate the dispute, file a complaint with ISBE or file for a due process hearing. "No" doesn't have to mean "no" forever. You have options. Even if efforts with ISBE fail, you still have courses of action to pursue to resolve the dispute. Continue to use the steps outlined here to prepare for complaints, mediation and/or a due process hearing.
No one likes having conflicts with others, but you should not be afraid to work hard to ensure that your child receives an appropriate education that meets his/her unique needs.
Where Seldom is Heard, An Encouraging Word
By now you know the road to becoming an effective parent advocate is long and often full of potholes. It means being disciplined, dedicated and determined. It also means that you may not win popularity contests at times. More importantly, it means not letting that matter enough to stop. We all like being liked. The trick is to not have our need to be liked paralyzing our advocacy efforts.
Parents can also get discouraged and just plain tired of the fight. School districts in Illinois are semiautonomous groups and each operates differently. The services and devices that are easy to obtain in one district might be very difficult to secure in another. Until you try getting services for your child, you won't know. Don't give up. You might get the services or devices included at the IEP meeting or a follow-up meeting. However, it may take filing a complaint, mediation, a due process hearing, or even beyond. Keep trying. If experience has shown that your school district will take every dispute as far as possible, go into the process expecting it to be long and drawn out. If they realize they cannot "wait you out," they may even decide to cooperate sooner.
Don't be reluctant to use the steps that Congress has set up for you. Once you read IDEA you will see that our federal lawmakers created these steps to protect your child's right to a program that fits his/her unique needs.***** Congress also set up the system for parents to advocate themselves, without costly legal representation, until they find it necessary to sue.
If you feel discouraged, read the comment section in the Federal Register for IDEA. It reveals Congress' intent for your child's right to a free appropriate public education and your rights as a parent. The Congress of the United States of America believes you can do it. They are behind you.
You can employ some of these strategies to help keep your energy and your spirits high.
Don't do it alone. Find at least one other parent in your area that is, or is interested in becoming, a parent advocate. Work together on projects. Help one another learn the law. Talk regularly. It doesn't matter if your children have the same disability. In fact, it might be beneficial if they have differing disabilities. It will broaden your knowledge. When two or more people work together they can achieve success that they could not realize individually.
Surround yourself with supportive people. You don't need to be constantly defending your actions to others. One parent stated that every time she told her mother about her parent advocacy work she would discourage her with comments like: "What makes you think YOU can fight a city hall"; "You are just making enemies"; or "Can't you just be happy with what you've got." She could not disown her mother. However, she consciously decided not to talk with her about the work she was doing on her child's behalf.
If you find yourself in the position of having to defend your work to friends/family, change the subject as soon as possible, or walk away. Your involvement with your child's educational program deserves a handshake, a supportive smile, a big pat on the back. Settle for more... not less.
Tell your story to other parents. Encourage them to work with you or someone else to make the system work for their child. The more parents there are in Illinois working to become an integral part of the team, the easier it will become for all of us.
Ask for help when you need it. Asking for help is difficult for some people. So is having to admit that you don't know what to do next. If that's you, get over it! You are holding yourself back from tremendously helpful resources. One Dad explained that when he began asking people what they would do, he always found two or three solid ways to continue. Think of it as doing something for your child rather than yourself.
Adopt a Can-Do attitude. A wise man once said, "I can't, never did one thing--I will try, accomplishes everything." Olympic runners learn to visualize themselves crossing the finish line, breaking the ribbon, receiving the gold. The little engine that could told himself "I think I can, I think I can" and did! You should do the same. Visualize yourself sitting at an IEP meeting, talking about your child, requesting services or devices that will help your child, and responding calmly to remarks that used to make you angry. Rehearse your responses to old arguments. Make a game of anticipating and preparing for new arguments.
Pick your battles carefully. Some disputes about your child's program are more important than others. Determine what is vital to your child's program and go after it. If it's clear that you are not going to get a consensus on a smaller issue, it may be an effective use of energies to hold the issue for a later date.
Remember why you are advocating. Public education prepares our children for the future. For some, the future may mean college or vocational school. For others, it may mean learning how to live independently, use public transportation, and supported work environments. For our children to reach their fullest potential, they will need an educational program that provides experiences (academic and social) to help them achieve that potential. You and the team will need to be creative in planning your child's unique program. If your district is not fulfilling its mandate, your work as parent advocate is to bring them back on track.
Now that you know how... Get your act together, and take it to school!
* In this TECHNOTE the term IEP is used throughout, but for parents of preschool children, the IFSP or Individual Family Service Plan, is the planning document. The information here is just as relevant for the IFSP as it is for the IEP. We decided to use only one term, for ease of reading.
** For those of us not used to writing goals and objectives this can look like a difficult task. Refer to the suggested reading list and check out a book or two about how goals are written at your local library. Believe it or not, it can be fun to learn this new skill.
*** See the suggested reading for reference materials.
**** A Parents' Guide, The Educational Rights of Students with Disabilities, Illinois State Board of Education, Department of Special Education. 1997, rev.
*****. Don't be intimidated about reading a law. It is quite readable using the right techniques. Here's how to do it. Skim over the bureaucratic, boring parts. Study the parts that appear to apply to your child. That's it . . . don't get bogged down thinking you have to read every word. The comment section is not actually part of the law, but a very good read. Rather, it clarifies Congress' intent by responding to questions from the public. It is a useful and interesting read.
About Your Rights
A Parent's Guide, The Educational Rights of Students with Disabilities (1997 rev. ), Illinois State Board of Education, 100 N. First St., Springfield, IL 62777-0001217-782-4321
Cost: Single copies free Provides and overview of rights of children with disabilities in education. Outlines parents role and gives the time lines a district needs to follow to be in compliance. Provides sample letters for filing a complaint, due process hearing, or requesting an evaluation.
A Road Map to Funding Sources, RESNA Press, Department 4813, Washington, DC , 20061-4831 202-857-1199
Cost: $25.00 + $3.50 S & H Deals primarily with funding sources for technology for people w/disabilities. Has sections on special education programming. Sec. II, pp 21-53 contains an outline of special education laws and rules. An excellent resource for educational technology.
Special Education Manual, Family Resource Center on Disabilities, 20 East Jackson Blvd., Chicago, Illinois 60604, 312-939-3513 Voice or 312-939-3519 TTY
Cost: $25.00 This manual contains copies of all federal and Illinois state laws that regulate and govern special education, including all that are listed below.
The Illinois School Records Act (Article 50 Illinois School Code.), Illinois State Board of Education, 100 North First Street, Springfield, IL 62777-0001217-782-4321
Cost: Free for single copies. Covers your rights to examine your child's school records and have them remain confidential. Individuals with Disabilities education Act (IDEA) Amendments of 1997, To obtain a copy, call or write your United States congressman or senator and ask them for the information as it is listed above. P.L. (Public Law) 105-17- is IDEA, the reauthorization of original act, P.L. 94-142 (The Education for All Handicapped Children's Act)
Technology and Individualized Education Program (Updated), RESNA Technical Assistance Project, 1101 Connecticut Avenue, N.W., Suite 700, Washington, DC 20036202-857-1140
Cost: $10.00, Covers mandates for educational technology in special education legislation, definitions, uses of devices and services, determining technology needs, educational technology and the IEP, who pays, delivering technology services to children, taking educational technology home and supports needed for a technology program in school.
About Becoming Part of the Team
Cutler, Barbara Coyne, Ph.D., You, Your Child and Special Education: A Guide to Making the System Work. Baltimore: Paul H. Brooks Publishing, 1993.*
Cost: $26.00. Dr. Cutler is an educator and the mother of a child with autism. This handbook is a resource that can show parents how they can make a difference in the quality of their child's education. Check out some of the chapter titles: Rights Are Not Favors. Substituting Fact for Fiction: The Myths Stop Here. Confrontation: When Nice Guys Finish Last.
Fisher, Ury & Price. Getting to Yes: Negotiating Agreement Without Giving In. New York: Penguin Books 1991*
Cost: $11.95. This book provides a "step-by step, proven strategy for coming to mutually acceptable agreements in every sort of conflict--whether it involves parents and children, neighbors, bosses and employees..."
Family Resource Center on Disabilities. How to Get Services by Being Assertive. 220 S. State, Chicago, IL 60604 312-939-3513 Voice or 312-939-3519 TTY
Cost: $10.00 + $2.00 postage. Covers assertive vs. non-assertive behaviors, developing your positives, eliminating your negatives, assertiveness at special education meetings, assertiveness exercises and assertiveness with bureaucrats and public officials. Call or write to order.
*These books are available at your local bookstore. If they are not on the shelf, the store can order the book(s) for you.