Some years ago, a parent came to my office to discuss the difficulties her
teenager was having in school. The parent was a kind and thoughtful
person, but looked overwhelmed. Her child had learning disabilities and
increasing emotional problems, and the pain of the child was etched on the
face of the parent. Her child was falling further behind, losing the
confidence she once had, and missing the academic skills and emotional
strength she would need for adulthood.
My client sat quietly for some time and then asked in a whisper, "What in
the world can I do for my daughter?"
Whether you and your child are entering special education for the first
time or the tenth time, you have probably asked the same question. You
have a dozen concerns and a hundred fears. You don't know where to begin.
The problems seem insurmountable. There are more than 5,000,000 children
with disabilities in the U.S., and at some point their parents have felt
the same as my client did -- and you probably have, too.
Fortunately, Congress enacted a law called the Individuals with
Disabilities Education Act, or IDEA, to assess children with disabilities
and provide special education programs and services to help them succeed
in school. Before IDEA was enacted in 1975, public schools frequently
ignored children with disabilities or shunted them off to inferior or
distant programs. IDEA represents a long-overdue recognition that
individuals with disabilities have the right to access public
institutions, be served appropriately and be treated with dignity and
respect.
The detail and reach of IDEA are remarkable -- no other law in this nation
provides such clear and unique legal protection for children. Everything
you do to help your child secure an appropriate education is connected to,
and determined by, the legal requirements of IDEA.
A. Special Education: An Introduction
"Special education" is the broad term used to describe the educational
system for children with disabilities. The term is used in this book to
describe that portion of your child's school system which provides special
services and programs for children with disabilities. There are three
fundamental questions to consider as you begin the special education
process:
Where is your child now?
Where do you want your child to be?
What do you need to get your child there?
IDEA entitles your child to an "appropriate" education which meets his
unique needs. You'll likely have a good sense of what is meant by an
appropriate education as you read this book. Broadly speaking, an
appropriate education involves the following educational components:
The specific program or class (called "placement") for your child.
Placement is more than just a classroom; it also includes characteristics
such as location, class size, teacher experience and peer make-up.
The specific services (called related services) provided your child, as
well as the amount and frequency of those services and who provides them.
Other educational components, such as curricula and teaching methods.
Special education centers around a process for evaluating your child and
the development and provision of an individualized education program, or
IEP. The acronym IEP refers to several inter-related things:
the meeting where the school district determines whether or not your child
is eligible for special education (called the IEP eligibility meeting)
the yearly meeting where you and school representatives develop your
child's educational plan (called the IEP program meeting), and
the actual detailed written description of your child's educational
program.
Special education then is essentially about the "what," the "where" and
the "how" of your child's educational program as developed through the IEP
process.
"Disability" Is a Loaded Term
Webster's New World Dictionary defines disability as an illness, injury or
physical handicap which "restricts" or causes "limitations" and
"disadvantages." Advocates in special education and disability rights
understandably object to the term disabled, preferring the term child with
disabilities -- this is the term we use throughout this book.
More importantly, all human beings come into this world with a variety of
qualities and characteristics. Having special education needs does not
mean that your child should be treated as "different" or denied the care
and respect that all children deserve. Human beings are complex and a
determination of who is able and "disabled" is an effort in futility.
Franklin Roosevelt was president four times and could not walk. Stephen
Hawking is severely disabled and understands the universe like few on this
earth.
It is not a cliché to say that we all have some kind of disability, even
as we realize that the difference in degree between one or another
disability can be significant and life-altering. Defining terms should not
be judgmental terms. I have many colleagues who are deaf. They are, to be
sure, without hearing, but to consider them ineffective or incapable would
be ludicrous. They cannot hear, but communicate in a beautiful, complex
and effective way. In a meeting of deaf people, it is my halting sign
language which is ineffective and disabling to me.
B. Special Education Basics
Special education laws give children with disabilities and their parents
important rights not available to children in regular education and their
parents. These include the right to:
*have the child assessed
*secure information about the child
*attend an IEP meeting
*develop a written IEP plan, and
*resolve disputes with the school district through an impartial
administrative and legal process.
While the specifics of any one child's special education needs may vary --
one child may need placement in a private school while another needs a
one-to-one aide for full-time participation in a regular class (called
mainstreaming) -- mastering the IEP process is central to securing an
appropriate education for your child. But equally important, the IEP
process is entirely individual. The program developed by you and the
school district must fit your child, not the other way around. What works
for other students is irrelevant if it won't work for your child. IDEA was
written in a way so as not to tell you or the school district specifically
how your child will be educated. Rather, IDEA provides rules to govern the
process, so the IEP team decides what is appropriate for your child.
C. Being Your Child's Advocate
Advocating for your child is easy. You want the best for her. Still, there
will be bumps along the way. The IEP process is maze-like, involving a
good deal of technical information, intimidating professionals and
confusing choices. For some families, it goes smoothly, with no
disagreements; for others, it is a terrible encounter in which you and
your school district cannot even agree on the time of day. For most
people, the experience is somewhere in between.
Don't fall into the trap of thinking that teachers, school administrators
and experts know everything and that you know nothing. Right now, you may
not have all the information you need and you don't know where to look for
it. But the law states that you and your school district are equal
decisionmakers, and, further, that the school district must provide you
with a good deal of information along the way.
You do not need to be a special education expert or a lawyer to be an
effective advocate for your child. The general strategies for helping a
child in the IEP process are not complex and can be easily mastered. The
cliché that knowledge is power is absolutely true in the IEP process.
D. Using This Book
The purpose of this book is to help parents effectively proceed on their
own through the IEP process, whether it's the first time or the fifth
time. The book is for parents whose child has a mild or severe learning
disability, has emotional difficulties, is deaf or blind or has other
physical conditions, or has a multitude of disabilities. In other words,
it's for every parent of a child with disabilities.
Specifically, this book can help you:
*develop an understanding of special education law
*understand eligibility rules and the role of assessments
*gather current and develop new information and material about your child
-- become an expert about your child
*determine your child's specific goals and educational needs
*gather current and develop new information and material about various
school programs, as well as options outside the school district
*prepare for the IEP meeting
*attend the IEP meeting and develop your child's IEP plan, and
*resolve disputes with the school district.
Mastering these tasks requires you to be generally organized (but not
fanatically so), willing to ask questions and make use of resources that
are widely available. The suggestions and forms in this book will help you
get -- and stay -- organized throughout the IEP process. Because
organization is half the struggle, this book focuses with equal vigor on
what the law means and how to organize yourself around the law.
Detailed Appendices provide invaluable information, including:
*copies of key federal special education statutes and regulations
*addresses and Web sites of federal and state special education agencies
*addresses and Web sites of 125 national and state advocacy, parent and
disability organizations
*a bibliography of other helpful books, and
*two dozen tear-out forms, letters and checklists to help you through
every stage of the IEP process.
Some of the material will be very familiar to parents who have been
through many IEPs -- for example, you may already know too well the list
of characters and the basic legal requirements. Still, we recommend that
you review each chapter, even the ones with which you are familiar. We may
have new insights or angles on old problems. Of course, you can skip
material clearly not relevant -- for example, if your child is already in
special education, you don't need to prepare for an eligibility meeting.
If you are new to special education, very little in this book will be
familiar to you. We suggest that you first take a quick look at the
chapter titles and table of contents to become familiar with key ideas and
how they relate to each other before you start reading. As you read, check
the index and jump among chapters if it makes sense. Highlight points you
want to remember and note in the margin the page numbers of related topics
in other chapters.
The special education process has a discernible beginning and end. In
general, it takes a year. There are similarities and differences between
the first IEP year and subsequent years. For example, each year you will
gather information and prepare for the yearly IEP program meeting, at
which time you and the school district will determine placement and
related services. But the first year always includes assessing your child
and determining whether she is eligible for special education. In
subsequent years, your child may or may not be assessed. Eligibility is
rarely addressed after the first year, unless you or the school district
feels a change is justified -- for example, if your child no longer needs
special education or may qualify under a different eligibility category.
There is a certain chicken-or-egg quality to some of the chapters. For
example, the chapter on assessments comes before the chapter on
eligibility. You will soon learn that your child must be assessed before
determined to be eligible, but you need to know how a child becomes
eligible before you arrange an assessment. Which chapter do you read
first? It really doesn't matter, as long as you read both.
Scope of This Book and IDEA
IDEA provides rights and procedures for children between the ages of three
and 22. There is as well a procedure for children under three, but this
book's fundamental focus is on children between three and 22. There are
also certain IDEA issues which involve very complex and detailed
procedures which are only briefly discussed in this book, such as
transition services to help children over age 14 prepare for a job or
college, including independent living skills. This book does not address
in detail issues regarding discipline of special education students,
including suspension and expulsion. This issue is complex; you should
contact an attorney or at least a support group (see Appendix 3) regarding
discipline issues. (20 U.S.C. §1415 (k); 34 C.F.R. §3300.519-529; see
Appendix 1.)