Ten Lies That Parents Of Special Needs Kids Often Hear: Know Your Rights!

When I speak to parents of children with disabilities, I often hear reports of Child Study Teams (those responsible, along with parents, for creating Individualized Education Plans or IEP’s) who pass along false information or undermine the critical role parents have in deciding on necessary services and appropriate placements.  I hear these reports from Latinx parents — some not completely comfortable with the English language and/or concerned about their immigration status — in low-income districts like Lakewood and Asbury Park. I hear them from parents of color in Trenton and Plainfield. I hear them from wealthy white parents in districts like Millburn and Montclair, as well as parents in my own middle-income diverse district.

This is wrong. But knowledge is power, right? And, in the special needs community, we’re all in this together.

Let’s start with this: Federal and state laws on the rights of children with disabilities and their parents are clear. (For NJ’s explanation of your rights, click on this link; it is available in multiple languages.) When district staff violate these rights (often by orders from their supervisors), parents and children become victims of that deceit. So let’s start a conversation and begin with 10 statements parents have heard from Child Study Team members; also see this excellent primer from Special Mom Advocate. Sometimes I’ll include possible responses for parents and, when relevant, resources. If you have questions, comments, or just want to add to this ongoing list,  put them in the comment box at the bottom of this post or email me at [email protected].

Think of this post as an online support and information resource. Together we’re stronger. 

“Your child is doing just fine and is keeping up with all his classwork so he or she isn’t eligible for special education services.”

Wrong! The federal law that all states must follow — the Individuals with Disabilities Act (IDEA) — in serving America’s 6.7 million American students with disabilities specifically says that grades and classroom performance can not be the sole determining factor of whether your child is eligible for special education services. Don’t let this get in the way of your advocacy. If you think your child needs to be evaluated for special education eligibility, you have the right to demand that the district do so.

“Before we find your child eligible for special education services we need to try our Response to Intervention (RTI) program first.”

Wrong! I hear this all the time from parents. It’s such a common ploy that the U.S. Department of Education put out a memo explaining that “states and LEA’s [districts] have an obligation to ensure that evaluations of children suspected of having a disability are not delayed or denied because of implementation of an RTI strategy.” If a school staff member tells you that they’re first going to try RTI, say, “I have nothing against RTI but federal law says you still have to evaluate my son/daughter.”

“We tested your child for eligibility for special education services but he/she doesn’t meet the criteria for eligibility. Therefore, this matter is closed.”

Wrong! You have the right to an independent evaluation at the district’s expense. Typically the district will provide you with a list of acceptable evaluators. If you have money, you can also pay yourself for someone you want who is not on their list and the Child Study Team must take that evaluation into consideration.

“I’m sorry, we don’t have a translator available for you so we’ll have to conduct this meeting in English.”

Wrong! Your district is required by law to provide a translator for you in whatever language you are most comfortable with. Don’t fall for this.

“We can only hold the meeting on Monday at noon. If you can’t make it then, I’ll call you later to tell you what happened.”

Wrong! You have the right to have the IEP scheduled at your convenience. Also, you can participate in an IEP meeting by phone or skype.

“We understand that your child’s IEP says that he/she is supposed to get help with his/her behaviors but right now we don’t have a behavioral therapist available. We’re trying to get one soon.”

Wrong! Remember, the IEP is a contract between you and the district. If a certain therapy is in the IEP, the district must provide it. If the district doesn’t have a particular therapist on staff, then it must contract with a private provider, a public agency, or even another school district to provide the service. If your child misses a session because a staff member is absent, the district must provide a make-up session. 

How do you know whether or not your child is receiving services written in his or her IEP? That’s a hard one. (Been there, done that.) You can ask for daily progress reports. You can ask to speak weekly with the therapist or your Case Manager (the person who runs the IEP meetings). If your child is reliably verbal, you can ask him or her. It’s really hard on parents to provide this oversight; we all want to trust the district to follow the rules. But if you’re in a district that isn’t trustworthy, you need to set up a system that reassures you that your child is getting what he or she is entitled to. 

“We’ve written the IEP already, so all you need to do is sign it.” 

Wrong! You are the most important member of the IEP team — who knows your child’s needs better than you? IEP’s, by law, must be developed collaboratively. Once you have a satisfactory IEP in place for your child, the next year’s may look similar (in regards to the frequency and length of speech therapy sessions, for example) but the goals in the IEP should change every year. It is your right to participate in the IEP-writing process. It is your right to see the all evaluations 10 days before an IEP meeting so you can review it and see the draft IEP before the meeting itself. It is your right to bring a friend or relative to the IEP meeting. It is your right to tape the IEP meeting. And it is your right to say to the Child Study Team, “I appreciate all the work you’ve done but I’m not going to sign this IEP until we’ve made the necessary changes.” 

This is important — don’t sign the IEP (which you’ll be asked to do) unless it includes all services you feel are necessary and you’re comfortable with the placement. (The placement is where your child will receive his or her academic instruction and therapies: In a regular classroom, a special ed classroom, an inclusion class, some combination, or even a different district or a private special education school. Click here for a list of private special education schools in New Jersey.) If the district refuses to provide the services you want you can go to mediation or “due process.” If that’s what you want you must request this in writing and send it to the Department of Education and your district. (See page 31 of this booklet for a pre-written request.) While you are in dispute, the district must continue to provide the services in the old IEP: That’s called “stay put.”  If you end up in court, feel that you have to hire a lawyer, and end up winning the case, the district has to pay your legal fees as well as out-of-pocket expenses for independent evaluations. 

Note: The New Jersey publication called Parental Rights in Special Education (you must be given a new copy every year) says, “You are considered a member of the multi­disciplinary team of qualified persons who meet to make these determinations and develop your child’s individualized education program (IEP).”

“Here’s the draft IEP. We took out occupational therapy because  your child is doing so well and doesn’t need that anymore.” 

Is that true? Have you been shown proof — in the form of testing or your own observations — that your child has overcome his or her small motor skills deficits? If not, then insist that occupational therapy continues. If the district refuses, request an independent evaluation (at district expense). If that doesn’t work, go to mediation or due process. (See above.)

“We know your child has been in a general education classroom but he/she will learn more if he/she is in a self-contained classroom. Also, he’s being disruptive to the other students.”

According to IDEA, your child must be placed in the “least restrictive environment.”  This spectrum runs all the way from classrooms with typical children to private residential placements. You have the right to insist that your child be educated in a general education classroom with assistance. This assistance can be a one-on-one aide or an inclusion classroom (one that combines special needs children with neuro-typical children) or with modifications to the curriculum. 

Let’s say your child is in a gen ed classroom but, when stressed, becomes disruptive. You can say to your Child Study Team, “my child needs to have a place to go when he’s anxious. I want the IEP to specify that he will have a calming room with support from a behavioral therapist when necessary.” Also, your concern is not the other children’s disruption. Your job is to protect your own child. There are a variety of ways to provide more inclusive instruction. For example, your child can go to a resource room for one-on-one math instruction but be mainstreamed for the rest of the day. 

“I can’t approve that service you just asked for. I need to check with my supervisor.”

Wrong! By law, the Case Manager must have the authority to approve services during an IEP meeting. This is a common tactic. Don’t fall for it.

What other questions do you have? Put them in the comment box or email me at [email protected]!

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