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Demystifying Speech and Language Services

beach-33 textSpeech and language services were always a mystery for us when our son was in school. Even as he struggled with written composition, our school’s Speech and Language Pathologist would end her evaluations with the statement that “services are not recommended at this time.” We assumed that since he did not have an audible problem with his speech, that he didn’t need any of her services.

We now know that this is a typical reaction of many parents, who like ourselves, don’t understand the wide range of services that a Speech and Language Pathologist can and should provide to students in a school setting. In this article, we want to review some of the most important of these services, describe our experiences with schools attempting to limit them, and make suggestions about how you can advocate for your child to have the services that he or she needs.

The Role and Responsibility of a Speech and Language Pathologist*

A Speech and Language Pathologist evaluates children to determine if there is a communication disorder in areas related to speech, the use of language, and sensory issues that impact communication and interfere with attaining educational goals.

Though there are many detailed aspects to what a Speech and Language Pathologist can evaluate, for the purpose of this article we have simplified them into the following categories:

  • Speech: This includes expressive speech (the quality of audible sounds such as articulation and voice volume and quality), receptive speech (how a person understands and processes verbal communication), and pragmatic language (social communication skills).
  • Language: This includes the comprehension and expression of written language, sequencing of thoughts, syntax and grammar, and understanding symbols and their meanings.
  • Sensory Issues: These include social and emotional deficits that impact communication and even difficulty swallowing pills.

In addition to diagnosing disorders in these areas, a Speech and Language Pathologist provides therapy to help children communicate with their peers, teachers, and families. Therapy can also teach children who are nonverbal how to use communication devices to express themselves.

In other words, speech and language services are not just about speech, they are about learning how to communicate with others in many different ways, with both expressive and receptive language, speaking, writing, and assistive technology. The professional organization for Speech and Language Pathologists in the United States takes the position that it is the responsibility of its members to provide a full range of these services to improve the “literacy achievement of… those who struggle in the school setting.” For more detailed information about this organization and what it expects from its members, visit the website of the American Speech-Language-Hearing Association.

Eligibility for Speech and Language Services

Given the wide range of speech and language services that are available, it is no exaggeration that they are often key to providing an appropriate education to many children with disabilities. Getting schools to provide these services as part of special education, however, isn’t as simple as you might think. In fact, we have found that schools may limit what speech and language services they will provide.

Our school district, for example, claimed that its Speech and Language Pathologists were available only for obvious expressive language deficits, like significant articulation problems or stuttering. We believe that the reason for this is that speech and language services can be intensive and therefore expensive for schools to deliver.

This is a concern for parents, because more and more children, especially those on the autism spectrum, need speech and language services to help with the less obvious, but no less important, pragmatic language or written expression deficits. Because most parents don’t fully understand the nature and importance of pragmatic language, or the connection between written and expressive language, it is easy for schools to convince parents that their child doesn’t need these services. After all, for a child with multiple learning disabilities, what parent wants to hear that there is yet another therapy to schedule for their child?

How Schools Take Advantage of Parents’ Ignorance

This was the situation we found ourselves in during one of our Team meetings in elementary school. Although testing had indicated that our son had difficulty with pragmatic language and written expression, the school’s Speech and Language Pathologist concluded her report by stating that since he didn’t have a noticeable problem speaking, she could not recommend any speech and language services. We actually felt relief that this was one area we didn’t have to worry about, and focused the rest of the meeting on occupational therapy and reading instruction. Unfortunately, the school let our ignorance relieve them of the cost of providing services that our son clearly needed and that they were obligated by special education law to provide.

By the time our son was in high school, we had an independent Speech and Language Pathologist evaluate him. She produced a very detailed report that said he needed intensive and frequent services with a Speech and Language Pathologist to help with pragmatic language and writing skills. We submitted this independent report to our director of special education, who then held a meeting with us and the school’s Speech and Language Pathologist.

During this meeting, which lasted over an hour, the school’s Speech and Language Pathologist reviewed our independent report (she hadn’t done her own testing), and once again we heard the phrase “services are not recommended at this time.” While giving her report, we noticed that she never made eye contact with us, but looked directly at the director of special education as if to make sure that she was saying only what was expected of her.

During another meeting, which the director also attended, we brought up the issue of pragmatic language instruction and she told us that the school’s Speech and Language Pathologist wasn’t necessary because “the students teach each other pragmatic language skills.” In her mind, it seems, our town’s high school was full of certified Speech and Language Pathologists.

Schools Warned by the Department of Education

Diverting students away from speech and language services is apparently becoming a common practice with schools. In 2015, the US Department of Education issued a guidance letter that alerted schools to reports that a growing number of children with Autism Spectrum Disorder may not be receiving needed speech and language services. The letter also said that some schools were not including Speech and Language Pathologists in evaluation and eligibility determinations or in meetings to develop IEPs.

The letter goes on to remind schools that when they conduct an initial evaluation for special education eligibility, the school must assess in all areas of the suspected disability, including “communicative status,” if appropriate, and that IEP meetings must also “include an individual who can interpret the instructional implications of evaluation results,” in other words, a properly trained Speech and Language Pathologist.

What Can You Do?

From all of the above, it may seem that the deck is stacked against parents. We can’t disagree, so we have the following suggestions to help you obtain needed speech and language services for your child:

  • Be aware of possible communication disorders your child may have beyond obvious expressive speech problems. Consider having an independent speech and language evaluation performed to confirm the full range of your child’s needs. If appropriate, have your independent Speech and Language Pathologist attend a Team meeting to interpret the data and advise on his or her recommendations.
  • When any speech and language evaluation is performed, especially the school’s, it should be comprehensive in all areas of a suspected disability according to Part B of IDEA. This should include an assessment of the communicative status of your child. See the US Department of Education guidance letter of July 2015.
  • Think about your child’s sensory needs and how they affect communication. If swallowing is a problem, for example, a Speech and Language Pathologist should be able to help with that. This type of service is included under IDEA.
  • If speech and language services are in your child’s IEP, make sure that the service delivery grid specifies a Speech and Language Pathologist to provide them. “Sped. Staff” is not acceptable, as it could be anyone. Neither is a “Speech and Language Assistant,” who in many states is not required to have formal training. The Speech and Language Pathologist should be certified by your state department of education as well as by the American Speech-Language-Hearing Association (ASHA).

Obtaining appropriate speech and language services for your child is not an easy task. Determining what your child needs through testing and knowing what a properly trained speech and language pathologist can do, however, are important steps in the process. Remember that your research and advocacy now will pay big dividends for your child’s education in the future.

Judith Canty Graves and Carson Graves

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* The inspiration for the subhead title and much of the content of this section comes from a document published by the American Speech-Language-Hearing Association (ASHA): Roles and Responsibilities of Speech-Language Pathologists in Schools. This document is considered an official policy statement of the ASHA, the professional organization for certified Speech and Language Pathologists in the United States.

Understanding Accommodations and Modifications

Of all the terms in special education, two of the most confusing for parents are “accommodation” and “modification.” We always saw these terms on our son’s IEP and, like most parents, never fully understood what they meant. This is unfortunate, because knowing the difference can have a significant impact on a child’s education. Both accommodations and modifications function together in a student’s IEP or 504 plan, but you need to understand how they affect your child’s curriculum and academic progress.

What is an Accommodation?

An accommodation is something that changes how a student learns, but doesn’t change the instruction itself. For example, an accommodation might mean that a student is seated at the front of a classroom to compensate for a hearing or vision deficit, but the student participates in the same curriculum as the rest of the class. Or, a student might be given extra time on tests to accommodate an executive function disorder, but the teacher still expects him or her to answer the same questions as all the other students.

Accommodations can also include the use of an assistive device, such as a specialized chair or desk, a computer, or a pencil grip. The curriculum remains the same as for the other students in the class, so teachers should have high expectations that a child with accommodations will be able to learn the material.

What is a Modification?

A modification changes what a student is expected to learn. Modifications alter the curriculum or the instruction for a student with disabilities. For example, the student might be given easier questions on a test or shorter and simpler reading assignments. In general, a student who receives modifications is not held to the same standards as his or her general education peers.

Other examples of modifications might be for a student with a math disability to do fifth-grade math in a seventh-grade math class. Or, a student might be required to know half the words on a spelling test that the other students are learning.

One important aspect of modifications is that they should be, in the words of a recent U.S. Department of Education advisory letter, “aligned with State academic content standards for the grade in which a child is enrolled… so that the child can advance appropriately toward attaining those goals during the annual period covered by the IEP.” The letter also reminds IEP Teams to create goals that are “ambitious but achievable” and to estimate how much progress toward reaching grade level that the student will make.*

In other words, modifications should not “dumb down” the curriculum so that a student can appear to be successful without actually making meaningful and effective academic progress.

Our Experience with Modifications

As we write in our book, our son has a language based learning disability that affects his reading and written composition. By the time he became a fluent reader in the fourth grade, he was behind in his writing ability. After all, if you can’t read, you can’t write. By the time he reached middle school, the academic demands were much greater than in elementary school.

Our school kept telling us that his writing problems were due to fine motor deficits, not a learning disability, despite independent testing that clearly showed the disability. Testing also showed that he was reading and comprehending at a college level, but his written composition was well below grade level.

Instead of giving him appropriate instruction, however, the school’s solution was to have him write as little as possible. In middle school, we began to get progress reports that indicated he had been “excused” from his written assignments. It was clear that the school was modifying his curriculum rather than trying to teach him how to write. There was no attempt to have him make progress toward writing at grade level. This was without ever having discussed writing modifications in our IEP meetings.

When confronted about this, the district’s director of special education proposed a formal modification for our son’s IEP that would excuse him from ever writing more than a single paragraph. After all, she continued, once he graduated from high school he could choose a college major in a subject that didn’t require any writing. Then, when he graduated from college, he could apply for jobs that didn’t involve having to write. In her mind, the solution was that simple. Interestingly, when he did eventually attend college, he majored in English literature and Classical languages, both of which require a great deal of writing.

Accommodations and Modifications Can Alter Expectations

Based on our experience, we want parents to be vigilant and pay attention to how accommodations and modifications can affect the school’s expectations for their child. We came to realize that “excusing” assignments was a modification and not an accommodation, one that made no attempt to allow our son to advance toward his grade level of writing ability. Such a modification was not part of our son’s IEP and it was inappropriate for a student who had the ability to do the assignments with the proper instruction and accommodations.

Modifications can be appropriate in certain circumstances but they are no substitute for proper and effective accommodations designed to help a student learn. Improperly used modifications can lower a teacher’s expectations for what a student can do, something we discuss in a previous blog article, The Problem With Low Expectations. This article documents how certain school systems around the country misuse modifications to make the schools look better on standardized tests than they would have otherwise, and to reinforce low expectations and stereotypes for students with special needs.

Your Child’s IEP Must Clearly Specify the Difference

When discussing accommodations and modifications with your child’s IEP Team, we recommend that you:

  • Make sure that any proposed accommodations and modifications are clearly spelled out in your child’s IEP.
  • Be aware of how the proposed accommodations and modifications align with your state’s academic content standards and still meet your child’s unique needs. These standards should available on your state’s department of education website.
  • Determine how the proposed accommodations and modifications will help close any grade level gap in your child’s performance. The accommodations and modifications should support IEP goals that are “ambitious but achievable.”
  • Use independent testing to verify what your child is capable of doing before you agree to any proposed accommodations and modifications. Don’t just rely on school testing, especially if you feel that the testing doesn’t fully describe your child’s strengths and weaknesses.

Schools are required by law to use appropriate accommodations and modifications for children in special education, but it is unfortunately your responsibility to see it is done correctly.

Judith Canty Graves and Carson Graves

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* United States Department of Education Office of Special Education and Rehabiltative Services, Dear Colleague Letter on Free and Appropriate Public Education (FAPE), November 16, 2015 (accessed on 1/27/2016)

The Yin and Yang of Inclusion

mt-p-textInclusion is a special education term that parents hear a lot, and one that they need to understand. As we look back over the 41 years of the Individuals with Disabilities Education Act (IDEA), we have come to realize that the word inclusion has had many meanings and interpretations over the decades. These interpretations have shifted the intent of inclusion from one that favored an appropriate education for students with disabilities to one that for all intents and purposes seeks to deny them the education that is their right. This is what we call the yin and yang of inclusion.

First, a brief history. The federal special education law, originally called the Education for All Handicapped Children Act, was passed in 1975. Prior to that monumental event, the general assumption was that children with disabilities could not learn. Expectations were low for these children. Public schools had the right to exclude them, so millions of children languished at home or in institutions.

As Special Education Attorney Robert Crabtree wrote in the foreword to our book:

The movement in the early 1970s to expand and deepen the legal rights of children with disabilities had its roots in the eloquent language of the U.S. Supreme Court written on behalf of another disenfranchised school population, children of color. In Brown v. Board of Education (1954) the Court declared: “…in these days, it is doubtful that any child may reasonably be expected to succeed in life if he is denied the opportunity of an education. Such an opportunity …is a right which must be made available to all on equal terms.”

It was in the 1970s that parents, advocates, and lawmakers began to work together to include children with disabilities in the public schools. Attorney Crabtree, with his law partner Lawrence Kotin, wrote the Massachusetts special education laws, Chapter 766, which later became the model for IDEA.

With the passage of the federal special education law in 1975, inclusion had begun for children with disabilities. Over the decades, it became a standard practice to include all children in the general education classroom, no matter how severe their needs were. Many children with special needs could be in a full inclusion setting all day or most of the day with little or no specialized instruction. Schools began to see the cost benefit of keeping these children in a general education classroom for most of the day compared to expensive individualized services.

With time, schools began to insist that “inclusion” always meant the general education classroom, leading University of Texas professor of special education, Jessica R. Toste, to write recently that: [I]nclusion is often falsely translated to mean the “place” where teaching and learning occurs.* This was the attitude we experienced when our son was in the public schools.

If inclusion is not executed carefully, however, many teachers without training in special education can find themselves teaching both mainstream children and children with disabilities at the same time. Without the proper training or without the right kind of support, the results are often dismal. In her article, Professor Toste cites a high dropout rate, criminal activity, behavior problems, underemployment and even unemployment for students with learning disabilities who do not receive an appropriate education.

The problem is that IDEA does not adequately define the term “inclusion,” it just says that students must be educated in the “least restrictive environment.” This lack of rigorous definition allows schools to interpret inclusion in a manner that is most favorable to their budgets, regardless of what effect it might have on the students in their charge. They can save money by insisting on including students with disabilities in the general education classroom as a substitute for providing individualized education with highly qualified teachers to meet the unique needs of each child in special education as required by IDEA.

The circular irony of the history of inclusion can be summed up as:

  • In the early years of IDEA, the law forced schools to include students with disabilities in the general education classroom.
  • Now, many schools use the law to force students with disabilities to remain in the general education classroom even when it does not allow them to receive an appropriate education.

Special education is supposed to consider appropriate services and placement for each child at no cost to the parents. Schools are expected to define the “least restrictive environment” for each child according to individual needs and not assume that full inclusion is always the answer. They are required to offer their students a “continuum of alternative placements,” not just assume that the general education classroom is always the least restrictive environment. Parents need to know, and more importantly expect, that full inclusion in the general education classroom is not the only option. In the law, “inclusion” does not always mean “place.”

Parents, be vigilant and ask questions to determine if your child will receive the proper specialized instruction by a qualified professional. That is what the law says your child should have. That is the fair and true meaning of inclusion.

Judith Canty Graves and Carson Graves

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* Toste, Jessica R., “The Illusion of Inclusion: How We Are Failing Students with Learning Disabilities,” The Huffington Post, 11/13/2015. Accessed on December 12, 2015 at http://www.huffingtonpost.com/jessica-r-toste/the-illusion-of-inclusion_1_b_8530372.html

Thoughts on the 40th Anniversary of IDEA

Lincoln WinterLast month the Individuals with Disabilities Act (IDEA) reached an anniversary milestone of 40 years. We have been reflecting on this law, the enormous impact it has had on education, and the daunting task of fulfilling its promise for all students with disabilities.

The civil rights movement of the 1950s and 1960s inspired parents and advocacy groups to believe that students with disabilities had a right to the same educational opportunities as their non-disabled peers. As a result, the level of school participation for the disabled increased at both the state and local levels. Despite this progress, by 1970 only 20 percent of students with identified disabilities were being educated in public schools. Many state laws specifically excluded students who were deaf, blind, “mentally retarded,” or “emotionally disturbed” (to use the terms of that era as they were written into the laws) from getting any public education at all. Many students who were turned away languished at home or in institutions.

Massachusetts was the first state in the country to pass a comprehensive special education law, known as Chapter 766. At the federal level, the legal recognition of the rights of students with disabilities occurred in 1975 when Congress passed the Education for All Handicapped Children Act. This law was modeled after Massachusetts’ Chapter 766.

The law required schools to provide a “free appropriate public education” to students with a wide range of disabilities. It also required that districts provide this education in the “least restrictive environment,” a mandate that opened the doors of mainstream classrooms to the 80 percent of students with special needs who had up to then been excluded. Later this law was given the name we know it by today, the Individuals with Disabilities Education Act.

We are grateful that public education became available to all students 40 years ago, but we also recognize that much more work needs to be done. Because IDEA does not give specific definitions to terms like “appropriate education” and “least restrictive environment,” school districts and parents frequently disagree about the meaning of these concepts. The main reason for this conflict is that funding for special education is so inadequate.

In 1975, Congress authorized the Federal government to pay for 40 percent of all special education costs. Since that time, the government has funded less than 20 percent of these costs. The rest of the money to pay for special education comes from either individual states or local communities.

The intent of IDEA is for schools to provide special education services to students with identified disabilities at no cost to the parents. But this takes money and IDEA has never been fully funded. Thus school districts and parents clash when a child’s needs require expensive services.

For the parents, the stakes are incredibly high, as their child’s future depends on an appropriate education. For school districts with constrained budgets, there is pressure to serve students in the most cost-effective way.

In addition, political groups, at both the state and local level, can apply great pressure to school districts. Some residents in towns complain that their tax dollars are used to pay for the educations of less-deserving children in special education. Funds to train teachers for educating special needs students or to hire highly qualified staff are often limited. As a result, the public school budget sometimes limits special education services to a “one size fits all” approach that ultimately fits no one.

All these factors can influence the education that individual students receive. Parents are frequently unaware of these political pressures and wind up feeling confused and frustrated by the special education experience. The result is that many children with disabilities do not receive an education that is appropriate to their needs.

Ultimately, while the implementation of IDEA is far from ideal, we want to acknowledge the anniversary of the law that opened the doors of public education for the many deserving children who might otherwise have been excluded from the classroom. We also want to reaffirm our goal of educating parents about their children’s rights so that their children might realize the education promised to them 40 years ago. We should remember that everyone benefits when all members of our society receive an appropriate education.

Judith Canty Graves and Carson Graves

Question: Has your family benefited from IDEA? In what ways could your experience have been better? You can tell us through our Contact page. Let us know if we can share your story with our blog readers.

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The Role of a Special Education Advocate

When we entered special education many years ago, we had never heard of a special education advocate. And if we had, we probably wouldn’t have hired one because we felt comfortable with our son’s Team members. Later, however, we realized that we had missed important opportunities by not having an experienced professional explain our son’s rights and the school’s responsibilities to us.

Going It Alone (Our Experience Without An Advocate)

In the early days of elementary school, the general education teachers were warm and nurturing. Teachers only had one class of about twenty children all day long, so the demands on them weren’t as great as on teachers in middle school and high school.

The special education teachers also seemed to make an extra effort to get to know us and our son. We were impressed by their sincerity and their efforts. But we discovered that sometimes the school culture and the administrative bureaucracy get in the way of that idealism.

By middle school, we found the nurturing environment and attitude fading away. The entire school culture changed. There were multiple teachers and much larger classes. Getting an appointment to meet with our liaison or the general education teachers was almost impossible. We found fewer opportunities to be involved in school life and to get to know the teachers and the other students.

Now we realized we were in trouble. Our son wasn’t making progress and the teachers didn’t have time to meet with us. By seventh grade we noticed that the goals in our son’s IEP were being changed without our knowledge or a Team meeting to discuss them. A friend suggested a special education advocate who she had used. We contacted that person and made an appointment.

What Does An Advocate Do?

We began by reviewing our son’s educational history with the advocate. Fortunately we had kept all his paperwork. The advocate helped us organize everything in chronological order, then she reviewed our son’s IEPs. Finally she explained to us that the school had committed multiple violations of the special education laws. Our trust in the school district was crumbling with each passing day.

We began to realize how naive we had been in those early years. Although everyone had been very nice, they had ignored opportunities to recommend needed services at a critical time for learning and sometimes even violated explicit special education laws. While it is possible that some of the school personnel simply did not know the law and what was required of them, it is also possible that they chose to not follow the law in order to save time and money on special education services the school should have provided.

Now we understood the importance of working with an experienced advocate. Had we been working with her in elementary school, she would have noted the violations and advised us on our rights when it could have helped our son the most. She also had a lot of experience working with other families in our town and would have helped us avoid certain situations unique to our school district.

How to Find an Advocate

There are no licensing requirements for special education advocates like there are for most other professionals you will encounter in special education. It is critical to check the training and credentials of anyone you are considering. In many states the federally funded Parent Training and Information Centers (PTI) offer advocate training classes. The Yellow Pages for Kids, maintained by the Wrightslaw website at www.yellowpagesforkids.com lists PTIs, advocates, and other professionals in every state. Finally, ask other parents with children in special education about advocates they have used.

Once you have one or more names of advocates you can contact, arrange for an interview, either on the phone or in person, and ask questions such as the following:

  • Confirm the advocate’s training and credentials. They should match what you have already discovered through your research.
  • Describe your child’s problems and listen carefully to the advocate’s responses. Try to get a sense of his or her style and personality and whether or not you feel comfortable with that person.
  • Ask if he or she has worked collaboratively with your school district in the past. Someone who knows the people and programs in your district already has a head start.
  • Finally, ask for references and talk to other parents who have used this advocate. Ask if the kind of help you are seeking is similar to what the advocate helped them with.

Although an advocate’s fees can be quite reasonable compared with other special education professionals you may encounter, if finances are an issue, there is a federal program, Protection and Advocacy for People with Disabilities, that can provide free advocacy help. The website: www.parentcenternetwork.org, contains links that will help you locate a group in your area.

How to Work With an Advocate

The role of a special education advocate is to help you understand the laws and advocate for an appropriate education for your child. There are many ways to achieve this goal. The two most common are:

  • You can work with an advocate behind the scenes. This can help maintain your relationship with school personnel if you fear they might feel threatened by the presence of an outside professional.
  • Have the advocate attend Team meetings and negotiate for appropriate services and accommodations. The advocate can help you understand the sometimes hidden dynamics in the room and keep the meeting on track. For more on how this can work, see our earlier post Surviving Team Meetings.

In some states special education advocates specialize in either legal or educational advocacy. A legal advocate, often referred to as a “lay advocate,” is not a lawyer, but has specialized training in legal matters that pertain to special education. Lay advocates can attend Team meetings, write letters, and negotiate with schools to help resolve problems. In some states they can even represent parents in due process hearings. Educational advocates specialize in making recommendations about accommodations and services based on a student’s disabilities. In general, there can be a lot of overlap between the functions of lay and educational advocates.

Ultimately, if you can only hire one professional, consider hiring a special education advocate.

Judith Canty Graves and Carson Graves

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Three-Year Reevaluation Strategies

fall-14 textTeam meetings are a major part of the special education experience, none more important than the three-year reevaluation. The evaluation reports and subsequent Team meeting to discuss them set the course of your child’s next three years in special education. During the meeting, the Team can modify your child’s services to make them more appropriate, or the Team may conclude that your child is no longer eligible for special education. With so much at stake, you need to be prepared for a meeting of this importance.

What Is the Purpose of the Three-Year Reevaluation?

The purpose of the three-year reevaluation is to determine if your child has made progress achieving his or her goals and what changes, if any, are needed to continue that progress. First, both you and the school personnel decide ahead of time which evaluations your child should have. They should be in all areas of suspected disability, such as academic, social-emotional, occupational therapy, or physical therapy. These evaluations should carefully assess what progress your child has actually made over the previous three years. The Team then meets to discuss whether your child continues to have a disability and what services, accommodations, or modifications are needed based on objective data provided by the evaluations.

What We Experienced in Reevaluation Meetings

We experienced several three-year reevaluations during our 15 years in special education and some of our experiences are worth mentioning. During each reevaluation meeting there were many separate reports that needed discussion. Fortunately, we had requested the written reports in advance so we could review them before the meeting. In addition, we usually brought outside professionals to the meetings to give reports of their evaluations. The meetings also included a discussion of IEP goals for the coming year.

We would attend these meetings without an advocate, confident we could manage the meeting and all the information presented in it. We were wrong about that. As each meeting progressed, we would begin to feel overwhelmed. It was difficult to listen, take accurate notes, and fully understand what was being said. Some reports were very detailed and confusing. Each report had recommendations that were briefly discussed but not fully explained. All of this would happen in approximately one hour, after which the teachers and specialists would have to attend to other duties. We would leave these meetings exhausted and wondering what, if anything, had been accomplished.

What You Can Do

Looking back on our experience now, we have the following suggestions to help keep your meetings more manageable:

1. Request, in writing, copies of all evaluation reports in advance of the Team meeting that will discuss them. Federal law requires schools to do this, though each state differs as to how many days in advance the school must let you review them.

2. Make sure that each report contains recommendations for services, accommodations, or modifications to be written into the IEP. The recommendations should be in plain English, not technical jargon, and based on objective data, not anecdotes. If not, ask the evaluator to clarify what he or she is recommending. If the recommendation is too brief, such as “more time on tests” or “provide counseling,” ask for more details. If counseling is recommended, for example, how many times a week? With whom? What kind of professional? Do not accept any report that says “Recommendations will be discussed at the Team meeting.” If necessary, postpone the meeting until clear and specific recommendations are added to any report that lacks them.

3. If many evaluators are scheduled to discuss their reports and time is limited, request a brief summary of each report, saving detailed discussion for the written recommendations. That way the evaluators will be on the record for saying what they think the school needs to do to help your child.

4. Never attend any Team meeting alone. Bring a spouse, partner, or friend. Ideally, bring a special education advocate who understands the dynamics in the room and who can help keep the meeting on track.

5. Bring someone to the meeting just to take notes. A person who is not as emotionally involved in your situation as you are can provide important factual information to you later. Don’t rely only on your memory.

6. Prepare a list of your concerns several days ahead of time and give them to your special education liaison. Work with your liaison to create an agenda with both school and parent items to discuss. Bring copies of the agenda to hand out to each person in the room. Follow the agenda during the meeting to help keep the discussion on track.

7. Have a Team discussion to determine if your child is achieving his or her IEP goals based on the results of the evaluations. The discussion should focus on specific goals based on the objective data in the reports.

Realize that the three-year reevaluation meeting is an important milestone for both you and your child. A productive meeting will give the Team the best possible chance to determine if your child has actually made progress over the previous three years and how to plan for the future. The data from the evaluations and the specific recommendations based on this data will be critical for your child’s success during the next three years.

Judith Canty Graves and Carson Graves

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Special Education Advocacy and the Quality of Life

beach-22 textThere comes a moment when you realize that what you’re advocating for is more than just accommodations. You’re really advocating for someone’s quality of life. That’s the moment you realize you won’t give up.

We recently read this quote on Facebook from the Dyslexia Training Institute and immediately recognized how true it is. We experienced such a moment when our son was in elementary school and was struggling to read and demonstrate other essential academic skills at grade level. We knew that advocating for an appropriate education for him, which began in preschool, would have to go beyond just the few services and accommodations listed in his IEP. Even though his adult years were far into the future, we intuitively knew that our efforts to improve his education then were actually building a foundation for his future.

The basic concept of the federal special education law, IDEA, is that an appropriate education is the key to a productive life. Mastering academic skills opens many doors for learning and fulfilling dreams, which in turn makes for a productive citizen. This simple concept is a true and worthy ideal for a society that places value on each and every one of its members.

Sadly, there is an imperfect relationship between our society’s ideals and our society’s practices. In special education, the ideal, expressed in the concept of the Individualized Education Program, is that every child should receive an individualized education appropriate to that child’s abilities. The reality is that all too often schools offer these students only a “one size fits all” program that ends up fitting none of them.

We witnessed this reality over and over during our fifteen years in the special education system. We know of many young people who were on IEPs in public schools and received diplomas, only to be unprepared for life after high school graduation. Those who have made significant progress since graduation had parents who were strong advocates throughout their primary and secondary education.

We all want our children to feel satisfied with school, excited about learning, and happy to apply what they have learned. The goal is for them to become independent and productive adults. An education that prepares a student for life after high school, whether it is attending college or technical school, or living and working independently, contributes to that quality of life.

The bottom line is that your child’s future depends on your advocacy now, especially if your child is in special education. You may feel it is the school’s job to handle your child’s education and you shouldn’t have to be involved. We know from our experience that you must be fully involved.

We knew that despite the extra work of being our son’s advocates, we had to maximize our efforts. We found independent professionals who guided us with testing, accurate information, and critical support. When it became clear that the public school was not providing an appropriate education, we placed our son in a more appropriate school and sought reimbursement to hold our school district accountable for providing the free appropriate education they were required to give him by federal and state law.

All of this was up to us. It was not easy, but we never stopped trying. The result was that our son went from being a struggling student in elementary school to becoming a college graduate. This has had a major impact on his opportunities for the future.

Bear this in mind as you progress through the school year. In every Team meeting, every evaluation, and every teacher conference, you’re really advocating for your child’s future. Don’t ever give up!

Judith Canty Graves and Carson Graves

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A Parent Journal

journalAs a parent, you have an important tool right at your fingertips to help you in your special education experience. This simple tool, developed over time, can be one of your greatest assets in advocating for your child. It is your parent journal in which you record your impressions and descriptions of your child’s behaviors, moods, struggles, achievements, and any other notable information.

You may not think that day to day life is worth recording or perhaps you think you are too busy to find the time to write journal entries. We want to tell you that this is valuable information that grows in importance over time.

Why is a Journal Important?

Remember the scene in Thornton Wilder’s play Our Town in which the main character Emily goes back in time to see her twelve year old self at home with her parents for one day? It is a poignant scene of an adult woman seeing herself as a twelve year old girl with her parents. She notices how young everyone is and all the details in her childhood home. She sees everything with fresh eyes, from a different perspective provided by the passage of time. What was absolutely ordinary and common years ago suddenly takes on a new meaning and significance for her. Your parent journal can do the same for you.

How We Started

We began our journal when our son started special education in preschool. Initially we just recorded details of phone calls and letters related to school, but as time went by we started recording the details of everyday life: what foods our son ate and his reactions to them, his activities, and how he slept. At an early age he had food allergies, so keeping a journal was essential to pinpoint his sensitivities to certain foods.

The journal evolved as he started elementary school, with details about his difficulties learning to read and write. We recorded our impressions of how schoolwork was going, parent-teacher conferences, and Team meetings. The more we became involved in special education, the more we wrote, since there were so many details to keep track of.

Over time, keeping our journal became a habit. We wrote detailed notes and impressions immediately after Team meetings and phone calls with school personnel. We recorded our son’s mood after he came home from school each day. We followed up these experiences with letters to school personnel. Writing factual notes became an important part of the special education experience for us. By middle school our entries revealed that school personnel were giving us conflicting information about our son’s school experience and helped us understand that his placement was not appropriate.

How We Used Our Journal

When we began to work with a lawyer to seek reimbursement for a more appropriate placement, she was able to use the facts and dates to strengthen our case. Through her, we began to appreciate the importance of the “trail of paper” we had created. When our school district served us a discovery request we had the information they requested at our finger tips. Notes that we had taken years earlier suddenly became significant and had a new meaning, just like Emily’s experience in Our Town.

For example, in third grade our school had sent us reports saying how well our son was doing, but in our journal we had recorded details of his frustration at not being able to read at grade level. We could clearly see his struggles with school assignments. He was not excelling in all academic areas as the school had claimed. Testing by professionals independent of our school district confirmed what we had written. Our journal entries were an important part of our case.

Your child will change over the years, but change can happen gradually. Sometimes weeks or months go by and you feel like nothing different has happened. But growth is always happening, so be aware, observe your child, and start recording the details of his or her life. You may feel too busy, but if you make it a practice to spend even five minutes a day recording your impressions, either in writing or in a recording, over time you will see details emerge that will pay big dividends in the future as you advocate for your child.

Judith Canty Graves and Carson Graves

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Why We Wrote Our Book

With September marking the start of the school year, we would like to repost the following article for parents who may be just beginning their experience with special education or who may have just discovered our website. We also encourage all our readers to take a look at our earlier articles for more information that may help you obtain an appropriate education for your child.

We entered the world of special education like most parents, with concerns about our child and a diagnosis we didn’t understand. Our experience began in preschool and continued through high school graduation, a span of fifteen years. Over these years we met many other parents of children receiving special education services. We listened to their stories and heard many themes emerge that corresponded with our own observations. As a result of this experience, we realized that every single year of a child’s education matters and that parents are the only constant advocates their child will have during these years. It is an enormous responsibility, but it can be an ultimately rewarding one.

Lessons Learned

One lesson our experience taught us is that the more parents know about special education, the more effective they can be as advocates for their children. Learning how special education works takes persistence because, like an iceberg, most of it exists below the surface of what parents can initially see. We have heard stories of school districts that are reasonable to deal with, but like us, you may encounter problems that are preventing your child from receiving an education appropriate to his or her needs. The keys to overcoming these problems are knowledge and organization. The tools you must use are research and a network of carefully selected professionals and like minded parents whom you have to identify and cultivate.

Parents Have Two Roles

Parents of children with special needs have two roles. The first, and most obvious role, is understanding and dealing with their child’s unique disability. The second, and more subtle role, is learning to navigate around the icebergs of special education. This second role usually comes as a surprise. Parents who have quite naturally focused on their child’s disability are often not prepared for how the special education system works. They assume that school personnel are the professionals who will know, and more importantly will do, what is best for their child. This assumption is all too often misplaced, because special education in many school districts has become an elaborate bureaucratic maze in which budget requirements are more important than doing what is right or even what is legally required. The result is confusion, disappointment, and lost opportunities.

Learn From Our Experience

Our book, Parents Have the Power to Make Special Education Work, is both a narrative of our personal experience navigating the special education system and a guide to help other parents translate our experience to fit their own situation. When we entered special education in the early 1990s, there were no online search engines or social networking sites, so it was difficult to find information and meet other parents with similar concerns. We felt isolated and confused. A book like ours would have changed the course of our son’s education. That is why we wrote it, so that parents who are now involved with special education can learn from our experience.

The realization that parents have the power to make special education work came to us while attending a workshop on transition planning. The speaker made the point that at a Team meeting most of the school personnel in the room actually knew very little about special education. Many understood individual pieces, depending on their specialties, but only the parents were in the position to see the whole picture. The workshop speaker encouraged parents to study the special education process, especially the laws, in order to understand their rights and protections. She also encouraged parents to study what a school district’s obligations are to a student because ultimately it is the parents’ responsibility for making sure that schools comply with the law. As the saying goes, knowledge is power.

Parents Do Have the Power

Our message is that parents can make special education work if they take the time to understand their child’s disability, their legal rights, and the often hidden agenda of school culture. We know that you, the parents, are the best advocates for your child. You must be proactive and organized, study the state and federal laws, and persevere. Doing all this will give you the information, the confidence, and the power to help your child get an appropriate education that will pay many dividends in the future. This will be the most important and rewarding job you will ever have. We hope our book will guide you and inspire you.

Judith Canty Graves
Carson Graves

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Special Education From an International Perspective

Star Island- 8 textIn the fall of 2014, professor Sarah J. Denman of the University of Queensland in Brisbane, Australia, wrote an article for the International Journal of Disability in which she reviewed our book in the context of special education around the world. You can read an abstract of Professor Denman’s review of our book.

Titled “Parents as Experts on Children with Disabilities: Being Prepared for the Long-Haul,” Ms. Denman used Parents Have the Power to Make Special Education Work to compare the resources parents have in other countries to our descriptions of special education in the United States.

We Are Not Alone

The article brings together literature from many international sources and cites studies from Europe, Australia, and New Zealand, as well as North America, describing the development of state and federal laws regarding the education of children with disabilities. This was very interesting for us, as our experience with special education is limited to the United States.

For example, it was a revelation that special education laws internationally closely parallel those in the United States, with an emphasis on inclusion in the least restrictive environment, IEP meetings, and the recurring cycle of special education, from referral, evaluation, meetings, goals and services, progress reports, yearly review, and re-evaluation. As the article points out: “This cycle is shared by parents regardless of their location in the world.”

Clearly, those of us in the U.S. have much to share with and learn from other parents around the world.

Parents as Experts

Professor Denman writes “A recurring theme in Parents Have the Power to Make Special Education Work is the role of parents as active participants, advocates, learners, and listeners within the special education experience…” It is this observation around which her essay is built, as she cites numerous articles published by academic researchers on special education techniques, but points out that few of these studies “extended to include a practical guide for parents.”

In fact, Ms. Denman believes that special education “professionals” have historically disregarded the value of parent participation, writing that: “Previously, the role of parents as `experts’ on their child with a disability was not widely accepted…” She feels that this is at least partly because before the publication of our book, there were few “…easy-to-read resources available for parents wanting to define and extend their role in the special education system.” By contrast, she writes, that our book is “a practical guide of the special education process…”

Encouragement for the Long-Haul

It is no accident that the essay’s subtitle is “Being Prepared for the Long-Haul.” Special education is the proverbial marathon, and parents must be psychologically prepared for the years ahead. It was therefore pleasing to us that the article ends with a mention of our Afterword in which we describe our son’s success in ultimately obtaining a college degree. “This Afterword may serve as an encouragement to parents who may not be confident of their ability in the demanding special education process ahead of them,” she writes.

In this one sentence, professor Denman has written as good a summary of our intentions as we can imagine, and it informs all of our efforts in writing our book and maintaining this blog. We hope that what we have written has encouraged you.

Judith Canty Graves and Carson Graves

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