Last week I published a post called “Ten Lies That Parents Of Special Needs Kids Often Hear: Know Your Rights!” and suggested that we in the special needs community share information to better advocate for our children. During the past week I’ve received many questions and comments from parents who are doing their best to navigate what can be an overwhelming thicket of regulations and red tape as they struggle to secure necessary services for their children. We can all learn from their stories so here are six questions (without identifying information) from parents, along with my answers. I appreciate all the feedback! Keep the questions and comments coming either in the comment box at the bottom of this post or by email at njleftbehind@gmail.com.

Q: My child gets speech therapy but her therapist doesn’t always show up. When I complain, I am told by the district that they don’t have to make up the missed sessions. Is my district right?

A: According to the well-regarded resource Wrightslaw, “Interrupting or failing to make-up missed services could constitute a denial of FAPE.” FAPE stands for “Free Appropriate Public Education,” and is one of the cornerstones of the federal law called “Individuals with Disabilities Act (IDEA).) So your district is wrong and you are right: When a therapist is absent (or the district has a vacancy in staff, another question that was asked), your child is entitled to make-up sessions. Your Individualized Education Plan (IEP) is the final arbiter: If the district agreed to, say, 2 sessions a week for 30 minutes, then the district has to provide 2 sessions a week for 30 minutes, regardless of staff absences. Sometimes this issue is resolved by adding a session during the week for as long as it takes to catch up (and you have input into what other class your child will miss during those make-up sessions). Sometimes the district offers make-up sessions during Extended School Year (or summer programming for students with disabilities) or after school. This is all negotiable but the bottom line is that your district must make up the missed sessions.

Q: My child’s school is not following her IEP. One of the goals for my daughter (who has mild cerebral palsy) is to practice her handwriting with an adaptive pencil grip, and here it is October and nothing’s happened. I want to set up a meeting with the occupational therapist to ask questions but I was told I’m not allowed to contact the therapist. Can you help me?

A: You  have a right to see all information about your child’s progress in all services provided by the district and it’s always a good idea to stay in close contact with your child’s therapists, especially since you need to know what they’re working on so you can start incorporating those new skills into the home environment. But sometimes districts are resistant to one-on-one meetings with you and the therapist — I remember struggling to get information about my son’s progress in speech therapy and it was very frustrating! I would start by contacting your Case Manager and expressing your concerns. In the best of all worlds, you and your Case Manager work collaboratively to maximize your child’s progress and he or she should help you out. If that fails, I suggest you call for an IEP meeting — you can do this at any time. The therapist is required to be there and you can talk to her/him about your child’s progress and the pencil grip. While you’re at it, you can also ask that weekly reports from therapists be part of your child’s IEP so regular contact is assured.

Q: I just read your article and understand that the information is specific to New Jersey. I live in Alabama and at my son’s last IEP meeting someone said that they need to ask their supervisor for approval for services, which you said shouldn’t happen in NJ. Do you know if this is true for other states?

A: This is not just a Jersey thing because IDEA is a federal law. This guidance from the U.S. Department of Education says,in regard to the IEP member who is representing the district (often this is the Case Manager), “it is important that this individual have the authority to commit resources and be able to ensure that whatever services are set out in the IEP will actually be provided.” So what is true in NJ is true in Alabama, or any other state for that matter. 

Q: My daughter attends private school and a specialist has diagnosed her as communication-impaired. Does she have the right to any special education resources from the school district we live in?

A: You do give up rights when you enroll your child in private school (unless, of course, that is the placement agreed to by the Child Study Team while you were in-district). While you don’t have the right to all services, you do have the right to be referred to your district’s Child Study Team for eligibility for special education. In other words, you have the right to ask for an evaluation. If the Child Study Team agrees that your child should be evaluated, then they go ahead and do it at no cost to you. If the Team determines that your child is eligible for services, you would collaborate with them on a service plan. The district has the right to say that those services will only be provided in-district. 

Q: Last May at the IEP meeting we agreed that my child, who is classified as autistic, would get social skills training through an afterschool club that includes both typical kids and special needs kids. I thought that was great, but then the club was cancelled — I think it was budget cuts — and now my son isn’t getting any social skills training.  What should I do? 

A: I would ask for another IEP meeting to clear this up. Let’s say your IEP says, “John (just making up a name) requires practice with social skills in order to derive academic benefit and this need will be filled through the district’s Social Skills club which meets one afternoon per week.” But that Social Skills club no longer exists. This doesn’t obviate John’s need for social skills practice but, obviously, this need has to be filled in a different way. Maybe there’s a social skills club in a nearby district. Your IEP can be changed to say, “John will attend the club at XYZ district (with your district providing fees and transportation).” Or maybe your IEP team will suggest that the district behavioral specialist put together a “lunch bunch” group that intermingles special needs kids and typical kids to practice social skills. In other words, your son still has the right to get the necessary service. The district has to find a different way for him to receive that service.

Q: My 8-year-old  daughter is on the autism spectrum and her occupational therapist just doesn’t get her. On the two days a week that she has OT, her anxiety spikes and it affects her whole day. But we’re in a small district and there’s only one OT. What can I do?

A: I’ve been in a similar place! My son is also on the spectrum — he has Fragile X Syndrome — and we had a speech therapist who insisted that one of his goals on his IEP should be making eye contact. Children on the spectrum, and especially FX boys, can find eye contact over-stimulating and anxiety-provoking. We refused to agree to that goal and, just to ensure her buy-in, we sent her a number of articles on eye contact avoidance in Fragile X Syndrome. What do you think your OT isn’t getting about your daughter? Are the sessions too intense? Are their other kids there whom your daughter finds challenging? These are questions you should direct to your Case Manager, who may refer them to the social worker. Then one of your Team members can observe the OT sessions and give you feed-back on your daughter’s behavior and what is provoking her anxiety. For example, if the other children in the session are provoking her anxiety you can ask to change the group OT sessions (which would be in the IEP as such) to one-on-one sessions. Your IEP has to have SMART goals: specific, measurable, attainable, results-oriented, and timebound. If your child isn’t reaching those goals then you and your Child Study Team should delve into the reasons and make necessary changes.