In my last article (The Best Kept Secret, Autism Spectrum News – Summer 2010) I discussed what might be the best kept secret of parent counseling and training (PCT) for parents of children with autism. Under the Federal Regulations of the IDEIA, PCT is to be provided to parents as a related service on your child’s IEP. It is often through PCT that parents begin to learn about treatments that may be appropriate for their child. It is a given that, “when you’ve met one child with autism, you’ve only met one child with autism.” Each child, of course, presents differently and deciding on an appropriate treatment for the child depends on the child’s unique needs.
How do you know how to treat the many components of your child’s autism condition? By consulting with professionals who can properly advise you. Your child will likely have deficits across several domains: occupational therapy, physical therapy, communication, behaviors, social skills, vision problems, among others. Once you get recommendations from your professionals you should give those recommendations to your school district’s special education committee. For example, in New York, you would submit the recommendations to the committee on special education “CSE” and in Connecticut, you would submit them to the pupil planning team “PPT” and ask them to convene an IEP meeting so that the “team” can consider the recommendations, reports and evaluations when planning your child’s program and placement for the school year.
Parents will want to make sure that their child’s needs are appropriately met and, as always, the first step is getting quality evaluations and recommendations. You may have a friend or neighbor who also has a child with autism that receives “floortime” therapy (Dr. Stanley Greenspan) and, based on what they tell you, you think that your child should receive the same intervention. You may or may not be right. You should take steps to find a professional to assess your child to see whether this intervention would be appropriate and effective. A quality assessment may confirm that floortime would be an effective intervention but it may also reveal that 1:1 ABA therapy would be a more appropriate intervention for your child. Until your child is evaluated, however, you will not know the answer and it is important to keep in mind that the school district won’t have the answer either. If your school district recommends a “methodology” without assessing or evaluating your child to make that determination, ask that they do so. Be insistent on that point.
When you are at your child’s IEP meeting, you want to make sure that everyone on the IEP “team” has a copy of the evaluations and reports that you submitted; you want to make sure those reports are “meaningfully” considered. Your reports may recommend intensive levels of ABA intervention for your child and you want that on your child’s IEP. I have often heard from parents that they are told that ABA cannot go on an IEP or “there is no way” that a specified level of ABA can go on an IEP. Neither is true – ABA and its intensity can absolutely be added as a specified service on your child’s IEP if recommended by your professional. It is true that some school districts are reluctant to add these services because they are expensive, but under the federal IDEIA statute, an anticipated expense is not a bar to meeting a disabled child’s unique needs.
It is important that you attend your child’s IEP meetings “armed” with reliable recommendations. While no one knows your child better than you do as a parent, “just because you say it’s so doesn’t make it so.” This means do not go to the IEP meeting asking for services for your child because “your neighbor’s child gets them.” Your opinion and demand will be immediately discounted. Think about it. You do not want your child to get fewer services because “other children are not getting those services or that level of services,” right? It would be completely inappropriate (but unfortunately not uncommon) for an IEP team to tell you just that – we cannot offer your child five hours a week of speech therapy, because no other child in the district is receiving such an intensive level of speech services. Your reaction must be, “What? Are you kidding me? You are denying my child services she needs and is appropriate for her because other children who may or may not need those services are not getting them?” Your child should receive services because they were recommended by professionals and it is appropriate for your child. Your child’s recommended services should have nothing to do with what “other” disabled children in the district are receiving or not receiving. Remember, you are your child’s advocate at that meeting – you have no duty or obligation to be concerned about other people’s children and what they may or may not be getting. You should focus intently on your child’s needs and not allow anyone on the team to “guilt you” into accepting less for your child because it is “too expensive” or that “other children are not getting the services.” Even if that is the case, that is not your problem as you are sitting at that meeting. The same is true for you – just because other children are receiving physical therapy does not necessarily mean that your child needs physical therapy. Ultimately, the strongest justification will be what an informed professional is recommending.
By all means, ask for what your child needs and be a strong advocate. However, always go into your IEP meetings with an open mind.
Tracey Spencer Walsh, JD (Fordham University School of Law, ’94) is the Senior Counsel at Mayerson & Associates, a New York law firm dedicated to representing children and adolescents on the autism spectrum, and assisting families in accessing the education and related services necessary and appropriate for students. For six years, Ms. Walsh worked as an educator and served as an Upper School Dean of Students at an independent school in Rye, New York.