Prior to my son Charlie's diagnosis of autism in July of 1999, I knew even less about special education than I did about autism. I literally didn't know anyone -- family members or friends -- who had ever been in special ed. I had less than zero idea if any of the public schools I had attended back in the 1970s and 1980s in California had special ed classes. I'm sure they did; to say that I was ignorant is an understatement.
Now I realize that my lack of experience and knowledge about special education back then speaks to a general attitude about special ed, a sense that it's great that our society provides it, but best not talk to about it; that special ed is for "those kids" who don’t do well in school, or have behavior problems, and so forth.
So here is a bit of a primer about what special education is and about how to navigate your way through getting services and an education for your child and dealing with the provider of those, your school district.
N.B. There are many, many websites and books out there about special ed. I’ve only highlighted web resources in these essay as I prefer to concentrate on a few quite comprehensive sites; it’s very easy to be overwhelmed by all the information out there.
What Is Special Education?
Special education refers to the services and accommodations needed by children who are not able to be educated in a "regular" classroom, due to their learning needs and disabilities. Special education services are provided for children aged 3-21 by your school district, under federal law.
The IEP and IDEA
IEP stands for Individual Education Plan and IDEA is the Individuals with Disabilities Education Act of 1997, a federal law. IDEA’s predecessor, the Education of All Handicapped Children Act (EAHCA), was signed into law in 1975 following the passage of the Education of Handicapped Children Act of 1974.
The IEP as a combination contract -- it is a legal document -- and guide plan for a child's education. The IEP spells not only what services your child is to receive, but the educational goals, the curriculum, for your child's schooling.
In reference to the IEP and your child’s actual education, this is the exact wording of the law about what an IEP must contain:
(4) A statement of the special education and related services and supplementary aids and services, based on peer-reviewed research to the extent practicable, to be provided to the child, or on behalf of the child, and a statement of the program modifications or supports for school personnel that will be provided to enable the child—IDEA was made possible by the Americans With Disabilities Act of 1990.
(i) To advance appropriately toward attaining the annual goals;
(ii) To be involved in and make progress in the general education curriculum in accordance with paragraph (a)(1) of this section, and to participate in extracurricular and other nonacademic activities; and
(iii) To be educated and participate with other children with disabilities and nondisabled children in the activities described in this section... [§300.320(a)(4)]
Education for students like Charlie is a federal and civil right. It wasn't always so: Prior to IDEA, families were on their own to educate their children and to get what help they might, or rather might not, from school districts. It is only fairly recently that public school districts started educating autistic students, or felt -- or were legally mandated under IDEA -- they must do so. My son has either been educated in special education classrooms in local public schools or (as has been the case since November of 2009) in an autism center (a "non-public school" that is not a private school) with tuition and transportation provided by our school district. As the school district is not able to provide an appropriate classroom/educational setting for Charlie, it is legally required to have him placed in a school that is able to.
- More information on IEPs is available at the Wrightslaw website and also at theNational Dissemination Center for Children With Disabilities (NICHCY)website. For regular reports about special ed law see the Special Education Law Blog by Charles Fox.
- More on the history of special education and IDEA and on congressional intent by Jennifer Parker and also at through the Council of Parent Attorneys and Advocates (COPAA).
Charlie was in a daycare center in St. Paul, Minnesota, when his teachers noticed that he was developmentally delayed, back in the autumn and winter of 1998 and 1999. We were given information about developmental disabilities and services and encouraged to have Charlie evaluated. We didn't do so for some months as we were in shock that Charlie might have delays. In retrospect, I'm very glad that Charlie's delays were identified as early as they were. While I remember some incredibly painful and strained interactions with the daycare teachers, I thank them today for noting that Charlie was not developing speech, social interaction, play, and other skills like the other children, and persisting to have him evaluated.
It might be your child's pediatrician or you yourself who have concerns about your child not developing; not developing language is one sign (it was one of a couple of signs in Charlie's case). In some states, you will be referred to your state's Early Intervention program, which (in New Jersey) is overseen by the Department of Developmental Disabilities. You may also be advised to set up an appointment with a specialist such as a developmental pediatrician or a neurologist, or a speech therapist or psychologist, to further evaluate your child. In St. Paul, early intervention services are overseen by the public schools. So Charlie's Individual Family Service Plan (IFSP) was put together by a Child Study Team from the St. Paul school district.
To qualify for special education services, you will need proof in the form of evaluations and reports that your child needs such, usually provided via reports by doctors and or therapists. The school district may wish to further evaluate your child to determine about what services he or she is eligible for.
You will be referred to a Child Study Team and assigned a case manager (usually a school psychologist, social worker, learning consultant) who will handle the administrative responsibilities for your child. Your case manager is your basic contact person to find out about scheduling evaluations, writing the IEP, organizing IEP meetings. This team will include your case manager, your child's teacher, a regular education teacher, speech therapist, occupational therapist, physical therapist, and---very, if not, most importantly---you as the parents.
Kinds of Special Ed Services
What services your child needs will first be based on the evaluations of your child. Once your child has started receiving services, there should be clearly stated criteria about accessing your child’s learning and provisions made for what to do when your child is not progressing.
Services can include:
- Placement (general education classroom placement; special ed placement with part-time inclusion; self-contained special education placement).
- Resource Room.
- ‘Related services’ including therapies (speech, occupational, physical).
- Aides (in special ed classrooms; as a support for your child if he or she is mainstreamed (partially or fully); on the bus.
- Assistive technology such as an augmentative communication device.
In theory, IEP meetings should be thoughtful, hopeful conversations about your child's needs, abilities, and how best to foster his or her learning. In practice, IEPs can be combative sessions in which, with the tape recorders (yours and the school district's) running, you argue it out about what services your child should receive -- a 1:1 aide, placement at a specific out of district placement that you know offers the best and most appropriate education for your child -- and how these are to be delivered.
You have the right to bring someone else with you, provided you inform the school district in advance. The same goes for the school district. However, who attends an IEP meeting should be determined in advance of the meeting and all parties informed. If the Assistant Special Education Director shows up at your IEP meeting, and her or his name was not on the list of people you signed off on to be at the meeting, you should at least point this out, and then request that that person leave or (if he or she will not) that the meeting be rescheduled with only the persons present who everyone knows, in advance, have been approved.
This is serious stuff and may it sounds excessive. But once you make it clear to the school district that you are not going to be "messed around" with, things will be easier. You are not there to be friends with administrators. It might be better to think of the IEP in terms of a business meeting because in some ways that's what it is to the school district. Call me cynical, but it's budgetary needs that often ultimately drive decisions made by school districts, though no one is going to say that.
It’s a cliché but the squeaky wheel does get the grease: You can never make too many phone calls, leave too many voice messages, ask too many questions, write too many emails (email is actually a very good way to communicate with your school district as you have an automatic written record of your communication, or attempt to communicate with the school district). It’s been said many a time but you the parent are truly your child’s best advocate and must represent him or her as you know you need to. IDEA is the reason that Charlie is able to live with us and to lead what I like to call a 'good life,' being a member of the community and living among friends and family. School districts and personnel can get preoccupied with numbers, budgets, and protocols; it’s your task as a parent to remind them that, for a child like Charlie, school isn’t just about learning the three R’s. It s the preparation for his whole life.
Some suggestions on preparing for an IEP meeting by developing a "positive student profile" can be found here via the NICHCY websites. Advocates for Special Kids has more information about advocates and their role.
The 10 Steps of Special Ed
These are the 10 Steps of Special Education according to the National Dissemination Center for Children with with Disabilities (NICHCY):
- Identification of a disability in a child -- this might be by a parent or family member or perhaps by a professional such as a pediatrician.
- Evaluation of the child to determine what diagnosis he or she has, by a developmental pediatrician or neurologist; other professionals, including some from a school district (such as a school psychologist, social workers, speech therapists) might also make a diagnosis of your child (but you may need to seek out a diagnosis from a medical professional to qualify for services).
- Deliberation and determination of eligibility for services by the Child Study Team assigned to your child by the school district (this will include a case manager/school psychologist, special education teacher, speech therapist, occupational therapist, and others).
- Decision that a child is eligible for services. Within 30 calendar days after a child’s eligibility is determined, the IEP team must write an IEP for a child.
- Scheduling of an IEP meeting by the case manager.
- The actual IEP meeting being held and the writing of the IEP, usually by the case manager. Know that as a parent you can ALWAYS provide input at EVERY stage of the process. I suggest always writing a statement to be included in your child’s IEP, so that the IEP always contains your own perspective about your child. You can write this prior to the meeting and share it at the meeting; I usually revise my statement after the meeting and then submit it to the case manager. I tend to get rather passionate at IEP meetings (especially when my son has been having difficulties, a not infrequent occurrence; so it is) and have found it helpful to read from my prepared statement.
- The actual providing of services (ranging from, perhaps, sessions of speech therapy to placement in a full-day special education classroom).
- Gathering of data on child's progress towards meeting the goals of the IEP and reporting of this (to you, and to the Child Study Team) with a view towards assessment: Are the services a child is receiving appropriate---is the child learning and moving towards the goals and objectives specified in the IEP?
- Reviewing of the IEP; this usually occurs annually but can certainly occur more frequently if your child is not progressing in his or her placement.
- Reevaluation of your child to determine if he or she is still in need of services, and/or if the services the child is currently receiving are appropriate.
"Will my child always need special ed?"
In the case of my son, yes. Charlie has never been in anything but a classroom or school for autistic children. He attended "specials" (library and music) with "typical" children for a brief period in elementary school with an aide but he struggled a lot and we had to conclude that these were not appropriate for him. He has needed speech therapy, occupational therapy, and teachers and aides specially trained to teach autistic children for all of his years in school and will continue to do so until he finishes school.
Not every child who starts in an early intervention program or requires special education classrooms, speech therapy, and the like as a preschooler will need all this throughout their lives. Indeed, the hope is that thanks to all of those services, a child might progress to the point that he or she would not need any more "special" services and be "just another typical" schoolchild-though one should be careful, lest a school district deem your child "too high-functioning" for any services at all with the result that your child might be placed in a "regular" classroom without any supports at all and flounder.
It would have been hard to hear that Charlie would always need special ed when he was a preschooler. When he was in elementary school, I used to drop him off and pick him up from school and felt a great deal of bittersweet at those moments: Intense love and pride to see him with his backpack drooping from his shoulders, and a pang that he was in a "special" class and could only join in the regular activities of the school (assemblies, Halloween parade) with extra assistance, and sometimes not at all. It’s hard to hear your child referred to as "classified" and that he or she is "different;" to hear other parents say to you (as one parent once said to me) that they feel "sorry for what you have to go through."
Those are the moments when I remind myself how it is Charlie’s civil right to be in school and to have an education provided for him, just as it is for students who don’t need special ed. In a sense, there’s nothing so "special" about special ed. Schools need to teach students, need to teach all of our children.