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How to Navigate the School System When Your Child Has a Disability

by Jill Fletcher, Parental Support Line Specialist
How to Navigate the School System When Your Child Has a Disability

As a parent, there are moments when warning bells go off—times when you notice that your child might be having trouble grasping certain skills that their peers seem to have mastered. Over the course of my career as a teacher and child case worker, time and time again I’ve heard parents make statements like the following :

“I have been reading with my child, but he doesn't seem to understand what he has read.” 

“I notice while we’re practicing spelling words, my daughter mixes up the letters, or writes them in reverse order.” 

“My child just seems to drift away; she’s not really overly active, but she doesn’t seem to be paying attention.” 

Do any of these scenarios sound familiar?  If so, you may want to start the process of getting some help with your child’s education. When your child is diagnosed with a disability, the rule of thumb for parents is: the earlier you can document the problem, the better.

“Keep copies of all correspondence, evaluations, minutes of the meetings you attend and your copy of the educational plan. This can become one of the most valuable documents in your child’s life.”

Where to start?

Start by gathering information to support your concerns.  Contact daycare providers, the child’s doctor, or anyone else who might be interacting with your child or knows them and may have observations to share.  Are they seeing what you have noticed? Have them put something into writing. Then it’s time to contact your child’s school for help. 

Put your concerns in a letter to your child’s school and be sure to include the date. Keep a copy of this letter in your files. This letter will start the “timeline” that documents the disability and need for extra support. Clearly state that the letter serves as a request for a multi-factored evaluation and that you are giving consent for this to take place, and be sure to clearly outline your observations and concerns. Include copies of any documentation, evaluations or assessments that support those concerns.  Also, describe any special or extra supports that the school may already be providing for your child. 

Be sure to provide your contact information with your address, both day and night phone numbers, email and cell phone. Remember that a reasonable time frame for response would be (1-2 weeks), and address your letter to the principal and Special Education Coordinator of your school or district.  By doing this, you have started the process for your child to get the help they need.  There are timelines that each state must go by, but the final determination of what type of help they will provide should be made within 100 days.

The process may vary from state to state.  You do have the right and responsibility to participate in any meetings with your school during the evaluation process. There should be several meetings: one to plan what evaluations will take place, which could include screenings, classroom observations, monitoring, consultations, assisted technology, and materials to support student achievement.  Your child must be assessed in all areas associated with the suspected disability including an appropriate evaluation in the areas of: health, vision, hearing, social and emotional status, general intelligence, academic performance, communicative skills, and motor abilities.

The members of the team from the school will come together to review the results and determine if your child meets the criteria for services.  The right to receive those services  has been mandated under Federal Law—The Individuals with Disabilities Education Act (IDEA) provides that if school-aged children fall under one or more qualifying conditions or under Section 504 of the Rehabilitation Act of 1973, they should be eligible for support.

If your child is determined to be eligible, your child’s team will develop an “Appropriate” (which means equal to an education that is provided for those students who are not disabled) program that will be designed to provide an “educational benefit for a person with disabilities.” This covers all school age children who meet specific criteria who may fall under on or more qualifying conditions , ie autism, specific learning diabilities, speech /language impairments, emotional disturbance, traumatic brain injury, visual or hearing impairment, and other health impairment.  Under IDEA, an Individual Educational Plan will be made. The name of this plan will vary from state to state, but it must be developed within 30 days.  This plan will be reviewed on a yearly basis, to establish goals for your child’s education and the supports that will be provided.  Your child will be re-evaluated every three years to determine eligibility for continuation of services.

A child may also receive services under Section 504, which has less specific procedural  criteria under which school personnel and services are provided. Under Section 504, a child who meets the definition for qualified “handicapped person” may receive services,, such as a physical or mental handicap that substantially limits a major life activity. This would include a child who has a disability that impairs walking, seeing, hearing, speaking, learning, working, or caring for him or herself.  504 services cover a lifespan, and safeguard a person with disabilities in areas of school, employment, transportation and public access to buildings, among other things. If a 504 plan is developed, it will be reviewed periodically, usually annually, and the guidelines are more flexible.
 

What are my rights and responsibilities?

If your child is denied services, you have the right to request that an independent evaluation be done to assess your child’s needs. Under IDEA the school will be responsible for the expenses, while under 504 the parents would cover the costs.  You may also appeal the decision under due process with the state education department.  Each state may have a slightly different process—you can find out more about the process in your particular area by accessing the websites for the Department of Education for you state/province.  Also check the yellow pages and web sites for advocacy groups for various disabilities in your area.  They can be a strong support for parents during this process, and have materials that can help you on this journey.

Remember: You are your child’s advocate.  You know your child better than anyone else at the table and it is your role to help develop the best educational supports to meet your child’s needs.  You should be notified of any planning meetings scheduled for your child. Prepare for these meetings by making notes and doing research. Be ready to give your views: you are an important part of the planning process. 

Build a file or binder about your child.  Keep copies of all correspondence, (send important concerns by registered mail), evaluations, minutes of the meetings and your copy of the educational plan.  This can become one of the most valuable documents in your child’s life.  Most schools make sincere efforts to provide the education and services your child needs.  But there may be times where you will need to push for things that you feel will make a difference for your son or daughter’s education.

Accommodations and supports may range from very minor changes to more restrictive or creative educational settings. Some supports may be as simple as alternative means of testing for your child, (oral testing, extended time to test, etc.) to employing a one-on-one aide who will support your child on the bus or in each class.  The beauty of the team approach is the problem-solving and creative solutions that can be developed to meet the needs of your child.  This is why it is called the individual education plan.

Remember we must “parent the child we have.” It is our job to advocate for the best education that can be provided for your child.  You know your child, and you are their cheerleader and supporter.  Your involvement in their education will make all the difference.

For more in-depth information about special education, see the National Information Center for Children and Youth with Disabilities (NICHY)


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Jill Fletcher has a Master’s in Education and is a certified Assistant Principal. Jill also taught for five years in a special program for “Youth at Risk of Dropping Out of School” in New Brunswick, Canada.

READER'S COMMENTS

Great article loaded with specific information to educate and direct me to the right places for support. Well done.

Comment By : Sue M. Y.

As this article states, documentation is extremely important in this process. If I would have read this article when I first suspected my son may have a learning disability, I would have a a lot of documentation to show the many attempts I have done to have the school evaluate my son. Making a request in writing to the school and keeping a copy of that request along with any other documentation is my best recommendation for any parent.

Comment By : Maria

My niece is 10 and has ADHD. She can not take meds for it because she has seizures and the ADHD meds conteract her seizure medicine. My sister says that the school wants to put her in all special education classes because they can not figure out how to teach her. Aside from that, she has no physical or other disabilities. The school has never suggested coming up with a custom plan that works for her. My sister does not agree with taking her out of classes, (like music, art, p.e.) that she has no problem participating in, just because the teachers don't know what to do with her. Seems like they just want to toss her aside because they don't want to put forth any extra effort. Is the IDEA program something that would work for my sister and my niece in their situation?

Comment By : Kathy

* Dear Kathy: Here are some options for you: Ask for a meeting with the school. If your niece is under special education there should be a plan for her education and placement. Under IDEA placement may be any combination of special education and general education classrooms. It is also the right of the child to be in the least restrictive environment. The school should/ could provide appropriate supports for inclusion in the regular classroom where the child can be successful. This could even include a one-on-one aide so that she could attend specific classes. I want you to understand that it is the parent’s role to be an advocate for their child, and if they do not feel that they agree with the decisions being made, they can seek support from an educational advocate, or, if need be, follow the due process procedure for their state. Further information is available on line, usually under the State Department of Education. I do not know the particulars of your niece’s situation, or the rationalization for the school's decisions. It is the right of the parent to express their needs, wants and concerns in the best interest of their child. They should be invited to all meetings held in regard to their child and I strongly recommend that they attend the meetings or have them scheduled so that they are able to attend. If there are any community service providers, they too can be in attendance and may be supportive of the family’s point of view.

Comment By : Jill Fletcher, MEd

You have mentioned about form 504, can I download the form online? Do you have a website for people who live in Maryland? Is there a program that the school system covers for the testing expense? My son needs to have an evaluation for his ADHD and the cost is very expensive. Thanks

Comment By : skuno99

* Dear Skuno99: To answer your question, I would suggest you talk with your child’s pediatrician about your concerns and observations to begin the process of gathering assessments. Write a letter to the school to request a meeting about having your child evaluated around your concerns. Remember to send this by registered mail so that you are starting a paper trail and a timeline. A 504 plan is arrived at with meetings with the school after the assessment of your child and his needs. This is a classification under the law that will let your child be eligible for supports under the 504 law. For further particular information about your state you can look up your state’s Department of Education online. But remember, 504 is a Federal Law of entitlement for children with special needs. I hope this helps!

Comment By : Jill Fletcher, MEd, Parental Support Line Specialist

Will my child run the risk of being "labeled" as a disbled person for the rest of his life? He has had an ADHD diagnosis in toddlerhood, and has been changed to "depression" in preteens; Will this follow him even if he were to "outgrow" his issues?

Comment By : Cherie2

MY 13 YEAR OLD HAS ADHD AND ODD. HE HAS AN individualized educational program in place for the last 6 years. my problem is, even at his best, he struggles to make passing grades which keeps him inelgible for sports which is an area he is successful. Up until now, is there any way around this ?

Comment By : mom

Dear Mom: Have you thought about getting your son involved in a community, city or club team of some kind, or in martial arts? We enrolled our son in karate last year, and he loves it. I can honestly say that it's had a positive influence on every aspect of his life -- including schoolwork. In the past year, he's become more responsible and confident, is better able to take care of himself around bullies, and has better control over his body and physical movements. (Always a plus for an energetic boy.)Maybe this is one place you might start. If you decide to go this route, be sure to enroll your son in a place that emphasizes skill-building and doesn't glamorize fighting and aggression. Good luck, and please let us know how it goes!

Comment By : Elisabeth

* Dear Cherie2: Some parents think of the words “permanent record” and get scared. But know that it’s not uncommon today for kids to have a 504 plan. It’s actually a way to get children services without putting the label of special education on them, so in that sense it works well. State school records and special education records are legally confidential--they are not public records. Ideally, other institutions like insurance companies can’t get at those records. I’m not sure I trust any place 100% to keep information confidential, although there is confidentiality methodology in place in public schools. I do think that in this day and age, if your son needs help and a 504 plan is the way to get it, then get it. That’s the risk you’re going to have to take. If the identified disability or the need for special education is based on a serious need your child has for either remedial work and supportive services around academic material or around behavior, I think it’s worth taking the risk. Your child needs those skills to manage his life. Think of it this way: the life of a kid is school. That means education, socialization, and behavior. If they’re not managing those areas to the degree that a 504 meeting is being suggested, then I think parents should take the risk and have their child get the services. Even if the fact that your son has a 504 plan does get out some day, it’s better than continuing to have this deficit in his education, socialization or behavior. Good luck to you, Cherie.

Comment By : James Lehman, MSW

My son Stephan, is 14 years old. He will be in grade 9 next year. But I think part of his pants is left behind in grade 8. Academically he averages between 45 and 65% - sport!!! He has colours in Squash, tennis and karate. He has inter privincial colours in squash and may I say he only started this year. He lives in a world of his own. In South Africa he is on meds called ritellin - now he is with you and now his not - ask him to bring you something and he never comes back - this year I decided on a student to help him inidividualy with homework and learning on a dayly basis - hopefully he will be concentrating more on academics and still be excellent in sport - he is always kind, loving - bst manners ever and he has always been an example for others - Hopefully his school which is by the way Grey College, one of the best schools in South Africa, the support of his teachers, friends and family and his God he will reach the top!

Comment By : Mommy

Our 8 1/2 year old son (ADHD with impulsivity) is getting away with acting out at school. ISS does not deter him from misbehaving at school, it only interrupts his misbehaving. He told his principal that he wants to misbehave enough to be sent home to be with momma. She said they won't send him home, but she also mentioned that suspension may be looming around the corner. He qualifies for 504, but the principal (who ironically sent us the notification that he qualifies for 504-ADHD ) tells us that his being under "the special ed umbrella for speech" is much better. He's getting close to suspension since they haven't figured out how to control him at school. They will not listen to how we get him to behave at home. We are very tired of the public school he has been attending this year.

Comment By : smst

I have a 5 year-old who started kindergarten. I was informed by his teacher recently that he has echolalia and that she is going to refer him for a speech evaluation as well as an evaluation by an occupational therapist as he has difficulty holding his pencil. Quite frankly, my son does not exhibit echolalia if the immediate or delayed type. He has been routinely evaluated by his pediatric doctor as well as developmental screenings in pre-K. He participated in a kindergarten screening when he was registered for school a couple of months ago and nothing was ever communicated to me that there were any issues. In a nut shell, this teacher's observations seem to be coming out of left field. There is some emotional immaturity on his part as to how he handles frustration; otherwise he is a bright, engaging, and smart little boy. According to many resources I've read on milestones, he's either right where he should be at or ahead of the curve. I'm going to have him go back to his doctor (who incidentally agrees with me) but I feel somehow there's been a breakdown in communication with the school. I'm not against my son being evaluated if there's a legitimate concern but the "diagnosis" seems baseless and suspect and my husband and I were undoubtedly left out of the communication loop and school policy in handling referral and evaluation was breached. What should I do next?

Comment By : concerned mom

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school related problems, disabilities, education system, learning disabilities, ADHD, ADD, difficult children, oppositional defiant disorder, Struggling teen, The Total Transformation, James Lehman

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