The Everything Parent's Guide to Special Education: A Complete Step-by-Step Guide to Advocating for Your Child with Special Needs

Introduction

IF YOU’RE READING THIS book, you probably have a child who has or may have a disability and you are concerned. Maybe your child is struggling in school and you don’t know how to get help. Perhaps your child has been referred for Response to Intervention or for further evaluation for special education services, and you’re not really sure what all of that means. Or maybe your child is already receiving special education services, and you’re not happy with how it’s working and you don’t know what to do about it.

Whatever the circumstances, you picked up this book because you wanted to know more about the special education process and how to navigate it to make sure your child gets the right help to make school easier. You are not alone in needing this help. Many parents feel helpless in the face of what seems like a daunting, tangled system of rules and regulations.

Sometimes sitting in meetings to talk about your child’s strengths and weaknesses, and what services are available to a child with that diagnosis, can feel more like a contract negotiation than a conversation about an actual child. It can be frustrating and overwhelming to balance being your child’s advocate with the need to work cooperatively with the school district to help your child.

This comprehensive, easy-to-read book is designed to teach you what you need to know about the laws that govern special education, the process of referring your child for special education, and what will happen once your child is referred. It’s designed to answer the question What’s next? before you even have to ask it. It will walk you through the process of keeping organized records, asking the right questions, finding the right answers, and even what to do if you and the school district can’t come to an agreement on what type of program your child should have.

No two children who need special education services are the same, but they are all covered by the same legal rights provided to them by the groundbreaking Individuals with Disabilities Education Act (IDEA). IDEA has changed the landscape of special education and gives parents like you the power of an equal say in deciding what your child’s educational program looks like.

Throughout this book, special education programs are referred to as special education services or special education. Non–special education programs are regular education or the general education classroom. That doesn’t mean that your child is irregular; it’s simply a way to differentiate between the types of programs.

Knowing what these terms (and many others) mean and how they pertain to your child can serve to make you not only a good advocate but an informed one as well. Being able to back up your position with more than just a gut feeling can alleviate a feeling of helplessness and replace it with a feeling of satisfaction and purpose.

You will learn about the wide variety of disabilities children who qualify for special education have and the varied effects these disabilities can have on their ability to learn in the general education classroom. No matter what type of disability your child has, you will learn what types of services are available, what accommodations might be helpful, and how to work with the school to create an individualized education plan to meet your child’s needs. Together, we can unravel that tangled system so you are confident enough to have a meeting about your child, not a negotiation for what services are given to a child with a certain diagnosis.

CHAPTER 1

The Basics of Special Education

Until 1975, if you asked the question What is special education? the answer you got would be incredibly dependent upon whom you asked. One parent of a child with a disability might tell you it meant her child couldn’t go to school with the neighborhood children; another parent might tell you that special education was the classroom where kids with physical or mental disabilities were taught away from the regular kids. Still others, both teachers and parents, might not even know what you were talking about if you asked them.

What Special Education Is

In 1975, Congress passed Public Law 94-142, the Education for All Handicapped Children Act. The law laid out a set of rules, regulations, and legal protections for children with disabilities that had never been seen before. It has been revised many times and, in 1990, was renamed the Individuals with Disabilities Education Act (IDEA).

According to IDEA, the basic answer to the question about special education is simple: Special education means specially designed instruction, at no cost to the parents, to meet the unique needs of a child with a disability. (IDEA, Sec. 300, Subsection/paragraph 39)

IDEA’s simple answer doesn’t mean that special education is simple, though, and it doesn’t mean it looks the same for every child. In fact, IDEA makes sure that special education doesn’t look the same for every child. That’s exactly what specially designed instruction means; your child’s special education program will be created specifically to meet her individual needs.

While your child’s plan is called an IEP (individualized education program), the term is also used to refer to the meeting that is held about your child’s special education. It’s not unusual to hear that you will be writing an IEP at the IEP.

Although it may sound a little backward, in order to make sure that children with disabilities are able to have that specially designed program, IDEA lays out rules that apply to all children receiving special education services. Those legally binding instructions provide the basics you’ll need to know in order to be the best advocate you can be for your child.

An Overview of Special Education Services

You already know that if your child has a disability that affects his education, he’s entitled to an educational program that is built around his needs. However, now you need to know what IDEA says about how to make that happen. Some of the more important points you should know are:

Your child has the right to a free appropriate public education (FAPE). This means that your child has the legal right to the same education as his peers without disabilities—without you having to pay for it. The school district must, at public expense, provide the support services, individualized instruction, and/or modifications your child needs to be able to learn what other kids are learning.

Your child has the right to a full evaluation to determine what his needs are and whether or not he has a disability that qualifies him for special education. This evaluation must be performed by the local education agency. (The local education agency is the school district or, for non-school-age children, the agency that provides early intervention services.) This evaluation cannot be done without your consent unless there is a hearing that rules against you.

Your child has the right to receive his education in an environment most like his nondisabled peers that will still allow him to learn. He’s entitled to stay in his neighborhood school if a FAPE can be provided there, or if the school can’t provide such a placement, then he has the right to a private school placement at the expense of the local education agency.

If it is determined that your child has a disability, he has the right to an individualized education program (IEP) with yearly, easily measured educational goals. The IEP is written by and agreed upon by a team that includes involved school personnel, evaluators, service providers, and, most importantly, you.

Parents have the right to ask for a hearing if they disagree with the local education agency about their child’s IEP, program, placement, or eligibility for special education. Furthermore, no changes can be made to an IEP without your permission or agreement.

The bottom line is that special education services look different for every child, but every child has legal rights in regard to how his or her program is developed and put into place. As you navigate the special education system, keep in mind that your child’s IEP only addresses the educational needs that are affected by his disability. That may seem as though he’s not getting all he needs, but if he can excel with partial support, that’s a good thing!

Although IDEA gives your child the right to a FAPE and an individualized program, it doesn’t say that the school has to provide the ideal or best program possible. The school is only required to provide a reasonable and appropriate education based on your child’s needs.

Who Receives Special Education Services?

Special education services aren’t just available for children between kindergarten and high school. Your child can actually receive special education services between three and twenty-one years of age.

That may seem like a wide age range, but there are practical reasons for it. Once children turn three, they are technically of preschool age. Whether your child is actually in a preschool or not, under the law it’s now time to look at how her disability affects her learning. If your child is already receiving early intervention services, your case manager will hold a transition meeting, changing her plan from family-based services to educationally-based services.

If she is not in preschool and her disability would make it difficult for her to learn in the same type of preschool education as her peers, it is likely that the services on the plan will include some sort of educational instruction, be it tutoring or placement in a preschool setting.

Under IDEA, provisions are made for special education services for children ages birth to three. These services are known as early intervention. The eligibility, types of services, and how they are delivered is different than school-based special education.

Having an age limit of twenty-one is also done for a valid reason. If your child has a disability so severe that it significantly impairs her learning and daily functioning, acquiring all of the skills necessary to graduate high school by age eighteen might not be a reasonable goal. Allowing students to continue in special education services until the age of twenty-one provides for better transition planning. It also gives your child some extra time to learn the skills she needs to move from a school environment to the community.

What Kind of Kids Get Special Education Services?

There is no specific profile of kids in special education. They don’t all look the same, they don’t all act the same, and they don’t all have the same needs. If there was a profile or a checklist, it might be a lot easier for some children to get special education services! What can be said about children who receive special education services is this:

Kids in special education come from all different backgrounds. They are from well-to-do families, middle-class families, and low-income families. They are children whose families have lived in a city for generations, and children whose families are migrant workers.

Kids in special education have differing abilities, strengths and weaknesses, and varied learning styles. Some learn quickly, while some learn more slowly. Some don’t have trouble with learning at all, but they might have trouble with underlying issues that affect their behavior and get in the way of learning. Still others have physical disabilities that make it harder to learn the same way as more typical kids.

Kids in special education receive services because they have been found eligible due to the unique learning needs they have from a specific disability.

Kids in special education all have plans that are tailored to teach to the way they learn best. Ideally, none of these plans are exactly alike.

Kids in special education are not dumb. In fact, some children who receive some special education support also qualify for gifted and talented classes in areas in which they do not have learning problems.

Kids in special education often receive support services in addition to special education. Those support services, known as related services, help your child get the most out of his special education program so he can continue to make progress toward his learning goals.

Related Services

Related services can be confusing because, for some children, these services are the only type of special education support they need. Keep in mind that when the teachers, administrators, evaluators, and service providers around you talk about special education, they are referring specifically to the modifications made to the way your child is being taught what he would learn in a regular classroom.

Remember, your child has the right to an individualized special education program. If she needs to be taught differently, that’s the special education piece. If she needs other services to help her benefit from that special education and meet her goals, those are related services. Related services help to make that individualized education a program.

The difference is that related services aren’t necessarily educational. For example, a child with a learning disability that makes writing difficult may need access to a computer or other type of device to be able to achieve success in a language arts class. That device, also known as assistive technology, is a related service. In another example, a child who has autism may need occupational therapy services to help learn strategies to cope with his sensitivity to sensory stimuli. Without occupational therapy, that child may not be able to benefit from his education, but with the related service he can.

Don’t assume the school can automatically deny a service not on this list! Since your child’s plan should be individualized to meet his needs, if there are related services he needs that are not on this list, IDEA says the IEP team can make the decision to provide them as needed.

Both of these situations are examples of why IDEA requires schools to give your child related services: to make sure your child is able to achieve satisfactorily in the mainstream classroom and to give your child the help she needs to gain benefit from her special education. IDEA includes the following services as related services.

Psychological services and/or counseling

Social work services

Occupational and physical therapy services

Speech-language and audiology services

Orientation and mobility services

Special transportation

Interpreter services

Assistive technology

Medical services (but only for evaluation, not continued care in a school)

School nurse services

Why Special Education Is Needed

Despite the flexible definition of special education and the frustrations that parents can bump up against when trying to get services for kids, special education is crucial. Without special education services, children who need some support in school or a more structured learning environment would fall behind.

According to a long-term study of students with disabilities done by the U.S. Department of Education’s Office of Special Education Programs, kids who don’t have adequate special education services to help them are at higher risk for dropping out of school, not just falling behind.

Special education as defined by IDEA allows children to stay in the same school as their neighborhood friends. It provides options for children who, prior to the mid-1970s, were, according to an article in a 1996 edition of the journal The Future of Children, routinely denied the right to enroll in school because school administrators considered them to be uneducable. There has been a lot of progress made in special education since IDEA, and even more progress with its reauthorization in 2004, but that doesn’t mean that parents don’t have issues with the special education system.

The Parents’ View of Special Education

If you’re thinking, All of this is great information, but my child is still struggling in the classroom and we haven’t been able to get him the help he needs, you are in good company. Researchers putting together a 2002 Public Agenda report, entitled When It’s Your Own Child: A Report on Special Education from the Families Who Use It, did a survey of over 500 parents of children with disabilities. The point of the survey was to see what parents’ attitudes toward special education was, since for a long time there seemed to be a stigma attached to having your child in special education. It seems now that stigma has lessened and parents are more concerned about how to get those services into place.

It’s interesting to note that in the decade since the Public Agenda report was released, there’s been a big shift in how many children receive special education services and for what disabilities. While the National Center for Education Statistics reports that the number of students in special education has stayed fairly steady, there has been a 175 percent increase in the system of children with autism, for example.

Here’s why that’s interesting and how it might apply to your child: If the overall number of kids in special education is staying the same while the number of children with certain disabilities in special education is increasing, that means that it’s possible that not all kids who need services are getting them. What parents had to say in the Public Agenda report supported that thought. Some of the highlights of the report are:

Over half of the parents surveyed said their school district did things the right way when evaluating their children for services, but nearly a third of parents said their child’s school was dragging its feet in getting the process started.

A majority of parents (70 percent) said kids lose out on getting services because the parents don’t know what services are available. Half of the surveyed parents agreed that it’s up to parents to figure it out on their own because the school is not going to volunteer the information.

One parent even went so far as to tell the story of her interaction with a school evaluator who told her if she were less persistent, her child wouldn’t be getting services. The moral of this story: You need to know what’s available for your child and you need to be persistent.

CHAPTER 2

Special Education Terms Translated

As you start navigating the special education system, there are so many abbreviations, acronyms, and specialized terms that you may feel as though you’re wading around in a bowl of alphabet soup. Don’t let that discourage you, though, as you may find many of the professionals around the table aren’t always sure what everything stands for, either.

What All Those Letters Mean

Although you can always ask for clarification as you need it, here is a brief list of some of the more common terms and acronyms to get you started.

COMMON SPECIAL EDUCATION ACRONYMS

Common Special Education Terms Defined

Not all of the words you’ll hear are acronyms. Some of them are terms that have a very specific meaning when used in regard to education. Not all states define terms exactly the same way, but there are some terms that have common meaning across the board.

Accommodations

Accommodations refer to the adjustments to how your child is taught to help him participate in his general education class. You may also hear these referred to as modifications. Accommodations can take many forms, including changes to the format in which your child is taught, the amount of time he has to take tests and complete work, behavioral intervention plans, and supportive technology or other services.

Accommodations don’t change what your child is being taught or tested on; they just change the way that information is presented to him.

Adequate Yearly Progress (AYP)

Adequate yearly progress is how much your state’s education department expects kids to learn in each subject area each year. Though states may define adequate yearly progress differently, as many states have adopted the Common Core State Standards, it’s starting to become more standardized.

What are the Common Core State Standards?

The Common Core State Standards (CCSS) are a set of defined expectations for grades K-12 in reading, writing, language, listening, and mathematics. They were created to make sure that students across the nation are equally prepared for college or the workforce upon graduation from high school. Although CCSS is voluntary, forty-five states have adopted them.

If your child has a special education plan, she may be working on academic goals at a different rate and not meet the adequate yearly progress as defined by your state’s standards. As long as her personal educational goals are being addressed and met, this is not a problem.

Americans with Disabilities Act (ADA)

The Americans with Disabilities Act is a federal civil rights law that says people with disabilities cannot be discriminated against when it comes to accessibility, employment, transportation, and other public accommodations. That is, it makes sure that people with disabilities are able to get to services and have the same rights as a person without disabilities. ADA is not limited to schools; it provides protection in the larger community as well.

Assistive Technology (AT)

Assistive technology is any type of device that is used to help a child with a disability be more functional in a certain area. Often, you’ll hear about assistive technology used to help nonverbal children communicate with teachers and caregivers, but assistive technology is not limited to communication. Children who have learning disabilities in reading and writing may use some sort of assistive technology to help make those areas easier for them, just as children with physical disabilities may use assistive equipment to improve other types of functioning.

Behavioral Assessment (BA)

You may more frequently hear this term as a functional behavioral assessment (FBA). In either case, it refers to the process of gathering and analyzing information about your child’s behavior. That information can then be used in creating a plan to help your child and his teachers manage unwanted or inappropriate behaviors.

A good functional behavioral assessment consists of data gathered through direct observation; teacher and parental input; and observations of how often, for how long, and under what circumstances a behavior occurs.

Behavioral/Behavior Disorders (BD)

This can be a scary term for a parent to hear, particularly because the word disorder often implies a condition that is chronic and persistent. In some states, the phrase is used in regard to children who show inappropriate behaviors and trouble with social interaction that get in the way of learning.

Behavior Intervention Plan (BIP)

A behavior intervention plan is a plan developed by your child’s team to help her learn and maintain appropriate behavior and social skills. Ideally, a plan should be positive and proactive as opposed to containing only negative consequences and reactive solutions.

Child Find (CF)

Child Find is a federal program outlined in IDEA that requires every state