Category Archives: Parent advocacy

What Gives Parents the Right to Request a Team Meeting?

It is an article of faith in the special education community that parents have the legal right to request a Team meeting at any time, for any reason, and the school must comply. A search of the Internet reveals multiple trusted websites and state parent guides making this claim. The problem is that a careful examination of IDEA’s statutes and regulations doesn’t turn up anything that explicitly grants parents this right.

This is a concern, as parents have written us about schools ignoring their requests for Team meetings to discuss important issues. When this happens, what authority can parents cite to request a Team meeting and have the school comply? It is an unfortunate reality that parents need a firm legal footing to convince a reluctant school district of their child’s rights.

Some States Give Parents the Right in Certain Circumstances

Some states, such as Arizona and California, have laws that allow parents to request a meeting, but with certain restrictions.

In Arizona, a “parent or public education agency may request in writing a review of the IEP, and shall identify the basis for requesting review,” and the review has to take place within 45 school days of the receipt of the request (Arizona Administrative Code R7-2-401(G)(7)). Since most reasons to request a Team meeting probably have to do with an issue that is in, or should be added to, the IEP, this is a pretty broad mandate.

California tells parents: “you can request an IEP meeting whenever you think one is needed in order to review or change the program.” Once the parent makes a written request, the school has 30 school days to hold the meeting according to California Education Code Sections 56343(c) & 56343.5. This wording is even broader than Arizona’s, though it is likely that “program” is intended to refer to the IEP.

The Right is Not Mentioned in IDEA

However, searching the text of The Individuals with Disabilities Education Act of 2004 (IDEA), statutes 20 USC §1400 through 20 USC §1482, and regulations 34 CFR §300.1 through 34 CFR §300.818, reveals nothing that grants parents the right to request a Team meeting at any time and for any reason. While 20 USC §1414(d)(4)(A) “Review and Revision of IEP” goes over the reasons for calling a Team meeting, it doesn’t mention who can request the meeting. Section (III) comes the closest by stating that the Team should meet when the parents present “information about the child provided to, or by, the parents.” This hints at the right of parents to request a Team meeting but still doesn’t address it directly.

So, What Gives Parents the Right?

The answer to this question appears in The Federal Register, the official journal of the federal government. This document compiles government agency rules, proposed rules, and public notices. Rules initially published in The Federal Register are ultimately organized and codified into the Code of Federal Regulations (CFR), which are authorized by the statute law found in the United States Code (USC).

The Federal Register provides a place to query points of law and expand on the law’s meaning. This is typically done through sections of comments followed by discussion. It is in one of these sections that a parent’s right to request Team meetings is finally mentioned, specifically on page 46676, in volume 71, number 156, dated Monday, August 14, 2006, on the topic “Rules and Regulations.”

The comment and discussion halfway down the left-hand column is about parents having the the right to change their mind when excusing an IEP Team member from attending a meeting. The concern is that it might become apparent during a Team meeting that the absence of an excused member could inhibit the development of the IEP. This would make the IEP developed at the meeting incomplete at best and possibly even inadequate. The question being addressed is: would it be worthwhile to modify the regulations to expand a parent’s rights regarding excused Team members?

The discussion in answer to this question focuses on the fact that there is nothing in IDEA that prevents a Team from reconvening to continue developing or modifying the IEP, as long as it is done “in a timely manner.” Then comes the pertinent sentence: The parent can request an additional IEP Team meeting at any time and does not have to agree to excuse an IEP Team member. The discussion concludes with the statement that no changes are needed to the regulations, which means that the discussion is considered to be settled law.


In other words, government regulators believe IDEA, as it is currently written, gives parents the right to request a Team meeting “at any time,” and that the meeting must be convened “in a timely manner.” The discussion does not mention any restriction to this right. So, when a school tries to tell you that you can’t have more than one Team meeting a year, this gives you the legal authority to request additional meetings and the school must convene the meeting without undue delay.

What You Can Do If the School is Uncooperative

Of course, we parents know that schools don’t often understand their obligations under IDEA and that some have been known to try to prevent parents from exercising their rights. If the school tries to tell you you can’t request a Team meeting when you feel that one is necessary, we have these suggestions:

  • First, show your liaison or special education director the discussion in The Federal Register. Politely explain that the school has an obligation to hold a Team meeting at your request and without undue delay. Also know that only you have the right to excuse a Team member from attending the meeting. If the school is simply unaware of its obligation, this should work.
  • Otherwise, you can request mediation from your state department of education. Every state has mediators who will arrange a meeting at no charge to the parent to resolve issues between parents and schools. In our experience, mediators are honest brokers who do their best to observe the letter of the law. In fact, it is possible that once you explain the issue, it is likely that a simple phone call from the mediator to the school will resolve the issue.

Of course, nothing is ever certain, but we have found that the more informed you are, the better the chance you have to convince your child’s school to provide the appropriate education your child deserves and by right should have.

Judith Canty Graves and Carson Graves

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Is the School Following Your Child’s IEP?

The Individual Education Program (IEP) is the cornerstone of special education. It is a legal contract between the school district and parents that defines what specialized instruction, accommodations, and modifications are necessary for a child to receive the Free Appropriate Public Education (FAPE) required by law. Since each child in special education has unique needs, by definition the IEP must be individualized based on what objective testing reveals about a child’s disabilities and capabilities.

A new study, published in February of this year (2018) in the journal, Educational Evaluation and Policy Analysis has uncovered disturbing trends in the way that schools create and implement IEPs that appear to violate special education law. This study, titled (with typical academic brevity), “The Dynamic Interaction Between Institutional Pressures and Activity: An Examination of the Implementation of IEPs in Secondary Inclusive Settings,” states that its purpose is to “illuminate a dynamic interaction between institutional pressures and the activity of providing students with a special education.”

The study identified different approaches that two schools took in creating and implementing IEPs that circumvent the intention of the Individuals with Disabilities Education Act (IDEA). While this study was undertaken with the goal of influencing the anticipated congressional revision and reauthorization of IDEA and not as an indictment of special education in general, you may want to consider its implications for how your school implements your child’s IEP.

Two Ways to Ignore the Law

In one school, the study discovered that the IEPs for 10th and 11th grade students were written around the school’s existing curriculum for general education. The school would then follow the students’ IEPs, but without acknowledging that the services were simply based on getting the students to pass their general education courses and standardized tests. As a result, the students in special education did not receive the educational services and supports that their disability required. The study cites “institutional pressures” (no doubt including the school budget) as the reason, something the study’s authors point out is not the purpose of an IEP, much less special education.

The second school in the study wrote IEPs for each student that were individualized, but then mostly ignored them. Instead, the school relied on additional staff in the general education classroom as a way to provide more support for the special education students. In addition, these students attended a daily special education “study hall,” where they received more support. While the students in the second school had greater access to the special education curriculum than the first school, it was without the benefit of a program “designed to meet their unique needs,” the purpose of special education. [20 USC § 1400 (d)(1)(A)]

What Can We Learn From This?

It is important to remember that this study had a small sample size and is just the first of several planned studies with the goal of encouraging debate among educators and legislators on how to update special education law. Among future studies, the authors hope to focus on how to improve the creation and implementation of IEPs for special education students included in the general education classroom.

Still, we can extrapolate from this study that even after more than forty years of special education law and practice, there is a lot of uncertainty, and perhaps reluctance, on the part of schools to provide an appropriate education for students with disabilities. This is something that parents must understand and be prepared to deal with.

What You Can Do

Making sure schools are following the law is a responsibility that should not have to be left to parents. Still, the reality is that in addition to parenting a child with disabilities, you also have the job of being a watchdog over the school’s implementation of your child’s education.

Here are some suggestions to help you do that:

  1. Make sure that all services, accommodations, and modifications are clearly defined in the IEP. See our blog article: The Three Essential Parts of an IEP Goal for some tips.
  2. Create a special education “paper trail” by organizing all the paperwork and other communications with the school that relate to your child’s education. Include samples of your child’s work to illustrate any problems or successes. If you suspect problems, you can use your paper trail to provide evidence of your concerns.
  3. Start a parent journal that, among other things, records your impressions of how your child’s IEP is being implemented.
  4. Arrange a meeting with your child’s teacher to make sure the teacher has a copy of the IEP. Go over any sections that the teacher is responsible for implementing and make sure that you both understand them. Discuss possible ways that you can communicate with each other regarding issues or concerns that may come up. Note that teacher meetings are easier to arrange in elementary school than middle or high school.
  5. IDEA gives schools the ultimate authority over the content and implementation of the IEP.
  6. Contact your state’s Parent Training and Information center (PTI), which is a federally mandated organization to provide parents support and information on how to make the most of their child’s education. The staff at the center should be able to advise you on your rights under IDEA and suggest a course of action.
  7. Make sure this person is fully independent and does not have any conflicts of interest that may prevent this person fully supporting you and your child.

Judith Canty Graves and Carson Graves

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Conflicts of Interest in Special Education: Part 2 – Outside Professionals

Parents are frequently unaware of possible conflicts of interest in special education. As we wrote in our previous blog article on conflicts of interest for school personnel, you must always try to be aware of the subtle, but real possibility that a school employee may act in the best interest of the school district first and put your child’s needs second.

But conflicts of interest are not limited to school personnel. Conflicts can also occur with the outside professionals you hire to perform evaluations, make recommendations for services, or advocate for your child. This sort of conflict is less understandable than with school employees, which is why you have to select outside professionals carefully.

What Sort of Conflicts Occur for Outside Professionals?

Conflicts of interest for professionals outside the school district occur when they have personal, professional, or financial ties to school administrators and employees. The fact that you are paying for a professional’s time does not always guarantee objective or appropriate advice or services.

Here are a few examples of the potential conflicts that a professional may have:

  • The professional might regularly get referrals from the school district for evaluations or services, such as counseling or occupational therapy. This person might not want to jeopardize future income from referrals by recommending that the district provide expensive services even when they are needed.
  • The professional may have developed relationships with certain teachers or administrators in the past. These relationships could influence how a professional writes an evaluation report or advocates for your child.
  • The professional might have a child in the same district, or even the same school, as your child. If that is the case, this person may not advocate strongly for your child out of fear that there might be consequences for their child.
  • We have even personally encountered a situation in which an outside professional was (unknown to us) seeking employment in our school district at the same time she was performing an evaluation of our son. This situation is unethical and casts a cloud over the professional’s objectivity.

Even if these kinds of conflicts seem unlikely, they do exist, which is why you need to carefully screen any outside professional you are considering.

How to Find the Right Professional

The first step in considering an outside professional is to determine what personal, financial, or professional ties this person might have with your school district. Establish that this person considers you and your child as their client. Ask direct and specific questions, because you need to know this information.

Questions you should ask include:

  • Does the professional receive any money, directly or indirectly, from your school district?
  • Does the professional expect to get future referrals from the district for their business?
  • Does the professional have children or other relatives in your school district?
  • Will the professional attend Team meetings and advocate for your child?
  • If the school has referred you to the professional or offers to pay for the professional’s services, ask if this person regards you and your child as their client and not the school.
  • If necessary, will the professional testify at a mediation or a hearing on behalf of your child?

The answers to these questions will reveal potential conflicts of interest. The last question in particular is a crucial one if you think you might have to go through mediation or a due process hearing to obtain an appropriate education for your child. If you are comfortable with the answers to your questions, then there is a good chance that the professional will be working in the best interests of your child and not be conflicted by other interests.

What You Can Do

Your goal is to be an educated consumer of the services that professionals offer when evaluating children and making recommendations for accommodations and proper educational placement. To help you achieve this, we recommend the following:

  • Review the code of ethics for any professionals you are considering. Organizations for lawyers, psychologists, and psychiatrists, for example, all require ethical behavior from their members, especially when it comes to acting in the best interests of their clients. Check to make sure that your outside professional is a member of an organization with such a code.
  • Check the license status of anyone you are considering. A professional who is licensed by the state has met higher standards than someone who is unlicensed. Most states have a Division of Professional Licensure website where you can search for an individual’s license status.
  • If your school offers to provide the services of an outside professional at no cost to you, consider such an offer carefully. This usually means that the organization offering this service (for example, counseling for parents and children), has a contract with the school and receives payment directly from the school. Their employees might be restrained in their recommendations so as to not lose this contract. If this makes you uncomfortable, consider using an organization that is financially independent from your school district.

As you can see, it requires time and effort to find a professional who is truly independent and has the freedom to write objective evaluation reports and advocate for appropriate services. But all this effort will be worth it to secure an appropriate education for your child.

This is an excerpt from Chapter 5 of our book, Parents Have the Power to Make Special Education Work.

Judith Canty Graves and Carson Graves

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Conflicts of Interest in Special Education: Part 1 – Schools

There is an aspect of special education that often goes unnoticed by parents. It can be subtle, but it is real. It is the possibility of a conflict between the needs of your child and the interests of the people working with your child.

Conflicts of interest can affect both school personnel and even outside professionals. Both groups can have relationships and financial ties that influence how they write evaluations, how they make recommendations for students, and how they interact with parents and other professionals. In this article we will analyze conflicts of interest for school employees.

Conflicts in the School

Conflicts of interest can occur in all aspects of life, but in special education where appropriate instruction for students with disabilities can be expensive, school personnel are often faced with a difficult situation. Do they advocate for a student who may need costly services, knowing that there may be personal consequences for their advocacy?

There are many examples of teachers who have lost their jobs or have been demoted after advocating for services and accommodations that the school administration did not want to provide. In one well-documented case, a Portland, Oregon, school district retaliated against and fired a teacher after she advocated for things like wheelchair ramps in the local high school.

This kind of conflict occurs primarily as a result of how special education services are funded. The people who approve services are frequently the same people who control the school budget or who are working for those who control the budget. If a potential service is too involved or costly, it is less likely that the school will provide it regardless of how beneficial it might be for a student. A school employee who goes against this unwritten rule is likely putting their job at risk.

It is important to note that we have encountered many school professionals who have a strong sense of professional responsibility and ethics. Unfortunately, they are not usually the ones who have the power to authorize services or accommodations that will cost the school money. The result is that employment security forces many school professionals to choose between what is best for them and what is best for the student.

These Conflicts are Systemic

In 1988, Galen Alessi, a psychologist and professor at Western Michigan University, conducted a survey of 50 school psychologists from around the country, each of whom had handled approximately 100 cases during the previous school year. That yielded 5,000 case studies. The goal was to determine the cause of learning and behavior problems in students.

The survey identified five probable causes of problems: faulty curriculum, ineffective management practices by the school administration, lack of parental support, and a student’s physical or psychological problems. All the school psychologists agreed that each of these could play a role in a student not learning properly or having behavior problems.

Yet, when the 5000 evaluations written by the psychologists were examined, every one concluded that the student’s physical and/or psychological problems were the primary cause of the students’ learning difficulties. Some also concluded that a lack of parental support or the home environment were contributing causes. None of the evaluations stated that the curriculum, teaching, or administrative practices were factors.

When asked about this, most of the psychologists in the study stated that school culture dictated that their conclusions be restricted to the student and family. Many said they could lose their jobs if they blamed school-related factors such as the curriculum or poor administrative practices.

Although this study focused on school psychologists, you should consider the implications when working with all school professionals. Bear in mind that the real client of any school employee working with your child is the school district, not you or your child.

What You Can Do

Most of the time it is difficult, if not impossible, to discover the existence of a conflict of interest affecting your child’s education. Learning to recognize conflicts when they exist and knowing how to effectively deal with them requires understanding your child’s legal rights and the pressures in the system that create the conflicts. Here are some ideas on how you can level the playing field:

  • Try to find ways to work cooperatively with school personnel, realize their limitations, and maybe together you can come up with a creative plan to help your child without ringing budgetary alarm bells.
  • Obtain a copy of your school district’s code of ethics and study it. Most districts post their code on the school website, or you can ask for a copy at the school office. While there are exceptions worth looking for, most codes don’t acknowledge the kinds of conflicts discussed in this article. At the least, however, it will show you what the school formally expects from its employees.
  • Check the certification of any school professional who works with your child. Some schools attempt to economize on their special education budgets by employing staff with interim certification or even no certification. This information is in the public domain. Most districts have websites where you can check this information, or you can ask at your school district office.
  • If you do suspect a conflict of interest, realize that you will probably not get honest and objective information regarding your child. The best remedy is to independently learn as much as you can about your child’s disability and what is necessary to obtain an appropriate education. Then you will be better able to ask pertinent and specific questions of school personnel to reveal the possible conflict and decide what action, such as filing for mediation or a due process hearing, is necessary.
  • Ultimately, the best use of your time and money may be to consult a professional who is outside of your school district to perform evaluations and make recommendations based on what your child truly needs.

The last suggestion is not foolproof, however. Our next blog article will cover potential conflicts of interest with outside professionals and how to find one who is truly independent of your school district.

You will find more information on this topic in Chapter 5: “Conflicts of Interest,” in our book, Parents Have the Power to Make Special Education Work.

Judith Canty Graves and Carson Graves

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Advocating over the Long Haul: Handling Stress and Staying in the Game

We are honored to present a guest blog by attorney “Parents Have the Power to Make Special Education Work.” The following is a transcript of his remarks to the Council of Parent Attorneys and Advocates (COPAA) annual special education advocacy conference. The occasion was his acceptance of the Diane Lipton Award for Outstanding Advocacy. The title of his presentation was: “Advocating over the Long Haul: Handling Stress and Staying in the Game.”

I am so pleased to have this award from COPAA. I have loved watching this very special organization grow into a robust resource for families whose children struggle in school, and their advocates and attorneys.

COPAA stands tall, manifesting the great power that can be exercised through organizing people with widely varying interests around a common mission at a national level.

COPAA educates and trains in special education law, fights to sustain and advance those rights, and speaks truth to power both directly at all levels of government, and indirectly through COPAA’s many trainees, as they assist parents in the clinches of Team meetings, negotiations with school districts and due process hearings.

Every state should have a comparable local organization – as Massachusetts does in its Federation for Children with Special Needs, the Mass. Advocates for Children, the Disability Law Center and others – but having COPAA so powerfully active at the national level provides an indispensable resource that greatly enhances the effectiveness of state organizations.

As for me, beginning with my position with the Massachusetts Legislature’s education committee in the early 70’s and right on through my years of practice as a special education attorney, I have been incredibly lucky in my work. There are not a lot of practice areas like special ed law where an attorney can wrestle with such interesting, worthwhile legal and substantive issues and know that the stakes are among the highest that can be imagined – the chance for a child who has intellectual, emotional or physical challenges to grow as far as she can toward her full potential.

We are entrusted by our clients with the future of their children; they let us into the most intimate recesses of their lives in order to carry out our work; and the trust is a sacred one. More, through our contacts with some of best of the professionals who evaluate and treat our clients, and through the research we must do to understand our clients’ needs, our work offers us the opportunity to learn about a vast array of critical factors that affect human learning and growth.

The work is highly stressful, given the stakes and the complexities, – you might have noticed! – and yet with healthy management of our stress we can become excellent helping hands to the clients we serve.

About that stress: If I may be indulged as an old warhorse now – and one, by the way, who would be with you in person were it not for having had my chest opened three weeks ago for a heart bypass [[I’m fine, by the way, and making an excellent recovery]] – I’d like to offer a few thoughts about how one might carry out the work of an advocate over the long haul, without burning out.

At this conference and through other means, I know you are all honing your advocacy skills and learning as much as you can about how to navigate special education’s crazy quilt of rules and substance. I want to address something a little different here – to describe a few basic elements of my own history that I think have enabled me to keep on keepin’ on for, now, more than 40 years in the work.

Never stop learning. Learn to listen. Protect your heart: cultivate calmness under stress. Be connected.

First, dig into every possible resource to keep educating yourself, and never stop learning. The disabilities that can undermine progress in school are widely various, and each one carries its own questions, history, and, typically, many competing schools of thought about how best to assist the child.

You are best armed – and most at ease in this work – if you are fully informed about the disabilities you encounter, the competing options for treating or addressing those disabilities, and the ways in which any particular disability has been viewed and treated by hearing officers and courts.

We’re strongest when we know what we’re dealing with … 

Are there any shortcuts? Not really, but one that I always recommend and would make required reading if I could, no matter where you may be in your advocacy career, is the book, Far From the Tree, in which Andrew Solomon writes eloquently and deeply about a number of common and not so common challenges that people experience, separating them from their families or their wider communities.

Other examples of must reading: We all know of the huge increase in the numbers of children struggling with spectrum disorders and the battles over how effectively to meet those children’s needs. A book that I think is indispensable for understanding Autism is Donvan and Zucker’s In a Different Key.

And third on my list: Carson and Judith Graves’s book, Parents Have the Powera cleanly written resource to help parents help themselves in the process – a way to make our own jobs easier. (Disclosure: the Graves’s book includes a foreword that I wrote for them, canvassing some of the history of advocacy and the current sharp challenges to the system of rights we work with.)

Second, a corollary: learn to truly listen without interjecting or being deafened by your assumptions – what you think you know. Listen deeply to both the verbal and the nonverbal communications of your clients, of your colleagues and of those on the other sides of the cases you handle. When we think we know it all, we sometimes miss that one singular fact or strategic opening that may turn a case in a new direction.

Third, you all have great hearts – you would not be in this business if you did not – so nurture and protect that heart! The two inevitable enemies of a healthy heart are uncontrollable stress and bad physical and nutritional habits. Take care of yourselves!

Know that one of the great heart-stressors in our work can be the attitudes and actions of hostile school personnel. How should we deal with them? We all encounter school people who act badly – with disdain, with implacable coldness and bureaucratic arrogance, even, sometimes, with flat-out bigotry toward persons with disabilities. But understand that if you react and are driven by rage, you hurt only yourself and your client.

We all have to figure out how to turn anger into compassion: otherwise we become our own enemy and, in many cases, our anger distracts us and blinds us to a raft of possible strategies that might actually help our clients. Try to avoid demonizing those who wish to thwart our mission: do everything you can to get behind the curtain and understand what drives the school folk that are blocking you.

They are, believe it or not, fully human, and somewhere in there you can almost always find an opening. At the very least this entails always – always! – treating school personnel with the utmost respect and kindness, even if – in fact even more so –they treat you and your clients with apparent malevolence. (This applies not only to our particular advocacy work, but is a caution for our whole political/cultural lives at least, it seems, for the next four years.)

As for the physical, please take care of that heart with exercise and mindful eating, and also cultivate an interest that has little or nothing to do with your special ed work, be it in music, drama, book clubs, yoga, whatever – feed the interests that give you joy outside of your work to sustain yourselves and the work that you do.

I know whereof I speak. My own attention to physical exercise, to music and to friends has literally saved my life and has made my ongoing recovery from open heart surgery a much easier road than it might have been. It’s never too late to start!

And, finally, please don’t work in isolation. Create, nurture and sustain a working cadre of fellow advocates and experts. This work is too demanding to carry it all on your own shoulders. Find and cultivate colleagues with whom you can toss around issues and strategies and provide mutual support.

And, more, with those colleagues, keep an eye always on political and legislative developments that might advance or undermine special education and disability rights, and be willing to make calls and write letters to legislators to let your voices be heard.

Thank you again for this award. It’s a good feeling to be recognized by my colleagues in the field for work that has so enriched my life and enabled me, with my colleagues at Kotin, Crabtree and Strong, to help children and families live better lives.

After the Diagnosis, Then What?

sunset-2-textParents who realize their child is struggling, who suspect something is amiss, will seek out the advice of a pediatrician, a psychologist, or perhaps another professional. At first, parents don’t want to notice that their child isn’t perfect. They may suppress their feelings, but eventually, if their child is not achieving the usual milestones, some professional they know may suggest testing. That person may diagnose a disability, which leads to the question: “Now what?”

Varied and Complex Reactions

Receiving a diagnosis of a learning disability or a developmental delay can be devastating and surprising news. Some parents deny that there is a problem and will not accept the diagnosis. Other embrace the diagnosis and research everything about it. Some will share it with other parents and some won’t.

The reasons for these varied reactions can be complex.

For some parents, a diagnosis of a disability brings out fear and shame. They refuse to let their school know about the diagnosis, believing that there is a stigma to having a child in special education. Fearing the label “disabled,” they refuse to explore the option of special education services, hoping their child will get by without additional help.

For other parents, a diagnosis brings a sense of relief. Once they understand what is behind their child’s issues, they can begin to plot a course of action to help their child more forward.

Grief, Disappointment, and Acceptance

For most parents, there is an initial grieving process. Their beliefs about their child may be challenged. What if their child won’t be able to go to college and achieve in a similar fashion to themselves? What if the diagnosis means a new way of life and a change of plans and expectations?

Grief and disappointment are common reactions.

Some parents even feel anger toward the professional who made the diagnosis. Others blame each other for being the cause of the disability. Fatigue sets in as parents struggle to understand what professionals are telling them.

Receiving a diagnosis for a child is a hard experience, but accepting the diagnosis can eventually lead to a positive outcome for your child.

Working Through the Confusion

Because there are a variety of diagnoses that a child can receive, the process becomes confusing. Parents hear terminology that they have never heard before and feel even more confused. People they have never met before will be delivering complicated news about their child. Many parents wonder if they can trust the opinion of a stranger who doesn’t know their child the way they do. Fortunately, there are things that parents can do to help them work through the confusion and put them on the road to becoming an advocate for their child’s education.

What You Can Do

  • Locate a Parent Training and Information Center: Each state in the United States has a federally funded Parent Training and Information Center. These centers can advise you of resources in your area. Go to The Yellow Pages for Kids at the Wrightslaw website to find a center near you.
  • Ask for a Referral to Special Education: Contact the special education department in your child’s school district to request assessments in all the areas in which you suspect a disability. As long as your request is in writing, schools must comply with your request within a specific timeline set by your state’s department of education.
  • Build a Team of Independent Professionals: Seek out independent experts who can do a comprehensive and objective assessment of your child’s special needs. Relying only on school testing can lead to a narrow view of your child, sometimes with important information missing.
  • Understand the Terminology: Parents will hear many new terms for different disabilities such as Attention Deficit Hyperactivity Disorder, Nonverbal Learning Disability, Cerebral Palsy, Tourette’s Syndrome, or Autism Spectrum Disorder. Be sure to ask the professional who gives you the diagnosis to be clear and explain the term so you can understand it.
  • Locate Parent Support Groups: Seek out groups of parents who have children with disabilities. Other parents can be a great source of trusted information. Find local groups of national organizations that are pertinent to your child’s disability, such as such as CHADD or the Autism Society.
  • Do What You Can in the Moment: We have discovered that mindful living is especially helpful when you have a child with special needs. It is pointless to project many years into the future and worry about your child’s well-being then. It is easier and healthier to focus on what you can do today, this week, or this month to help your child.
  • Remember That You Are Not Alone: Thousands of parents have children who get a diagnosis of special needs every year. Consider family members, friends, neighbors, and clergy as sources of support. If you belong to a faith community, ask if there is a special needs ministry. Many churches have them to create accepting communities for children and teens with special needs.

Judith Canty Graves and Carson Graves

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A New Kind of Book Club

mountain-clouds-8-textWe recently had an idea that we would like to share with parents whose children (or grandchildren) are in special education. Have you ever considered starting a book club to read and discuss books on special education? We recently read about a parent group that was reading Pete and Pam Wright’s excellent book, From Emotions to Advocacy. That was our first book on special education and it really opened our eyes to the reality of special education and advocating for our child.

Instead of joining a book club to read the latest fiction, why not join with like-minded parents to read and discuss books on special education or any other books that would help you advocate for your child’s education? At the end of this article, we’ll suggest some of the most useful books we have come across.

How to Begin

Once you choose a book, your group can plan to read one chapter a week and discuss it at the next meeting. Books by Pete and Pamela Wright and also our book, have a lot of important information and ideas for parents, so it is important not to try to cover too much in one meeting. The weekly discussion could also include a brainstorming session about how you can use the information from that chapter to improve your child’s experience in special education.

Here’s an example: In Chapter 11 of Parents Have the Power to Make Special Education Work, we write about transition planning and graduation. This is a topic that even parents of middle schoolers need to start thinking about, since effective transition planning should begin in the IEP meeting preceding a student’s entering ninth grade.

In this chapter, we explain why planning ahead is important, and we discuss the details of transition planning and services. We also describe what we call “the graduation game,” which is how some school districts give inflated grades and overly optimistic progress reports to ensure that a student will graduate easily and on time. Many parents don’t understand that for schools, graduation ends their obligation to provide special education services, so there is a great incentive to graduate students, whether they are prepared for the next step in their lives or not. We end the chapter with eight points describing what parents can do to prepare for transition planning and graduation. This section can be a good starting point for a group discussion.

Some Book Suggestions

You may already be thinking of some books that you would like to read and discuss in your book club (Parents Have the Power to Make Special Education Work is a good place to start!), but in case you would like some suggestions, here are a few of our favorites, and why we like them (we’ve provided Amazon links to these books for your convenience only; we have no financial interest in selling them):

  • From Emotions to Advocacy by Pam Wright and Pete Wright. The Wrights are in the forefront of helping parents understand and deal effectively with special education. This is one of their best books for parents. The Wrightslaw web site is likewise one of the best Internet resources for parents.
  • Writing Measurable IEP Goals and Objectives by Barbara Bateman and Cynthia M. Herr. This is a clear and concise guide to one of the most important parts of the IEP. It contains useful examples that you can follow.
  • Straight Talk About Psychological Testing for Kids by Ellen Braaten and Gretchen Felopulos. This book provides clear explanations of how psychological testing works and how testing can identify specific learning disabilities. The authors go into the issues of interpreted scores, deciphering jargon-filled reports, and making sure that a report contains useful recommendations. There is also a discussion of how to choose the right professional to conduct tests.
  • How To Compromise With Your School District Without Compromising Your Child by Gary Mayerson. This is an engaging and candid text, written by a special education lawyer who is also the parent of a child with special needs. The book is full of first-hand accounts of dealing with school districts. Many of these accounts read like verbatim descriptions of encounters we have had with our school district, illustrating how the problems in special education are universal.

Coming Together to Increase Your Power

These are just a few examples of books that you may find helpful in increasing your understanding of special education and advocacy for your child. By reading and discussing such books with other parents, we think you will find that there really is strength in numbers and discover a great source of emotional support. We hope this idea will work for you!

Judith Canty Graves and Carson Graves

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Special Education Etiquette

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Special education can be both rewarding for parents and a source of frustration when things don’t go the way they should. While some experts believe that conflict between parents and schools is normal and inevitable,1 it is too easy to become frustrated with the special education system and take it out on the individuals in the system you encounter most often.

The Individual is Not the System

It can be unfair, however, to confuse the individual with the system. Teachers and other professionals who choose special education as a vocation usually do so out of a genuine interest in helping students and can be as frustrated by the system as parents. Whenever you are tempted to display your anger and frustration, our best advice (paraphrasing investor Warren Buffet), is to remember these two rules:

  1. The special education experience is not about you, it is about your child.
  2. Never forget rule number one.

What we mean by this is that no matter how many violations of the special education law the school commits and no matter how angry that makes you, do not take the situation personally. Always do your best to maintain a cordial relationship with the people who are teaching your child, providing services to your child, or administering the program your child attends. You need their help for your son or daughter to get an appropriate education.

Seek Appropriate Remedies, Not Confrontation

Confrontation only makes school personnel defensive and less cooperative and puts your child in the middle of an uncomfortable situation. To quote one expert: “Unless you are prepared to remove your child from public school forever, you need to view your relationship with the school as a marriage without the possibility of divorce.”2

If necessary, you can seek remedies for problems in a due process hearing, but if you do, the hearing officer will want to know that you first have made every effort to cooperate and try reasonable suggestions that school personnel offer. It is fine to point out problems and seek to negotiate solutions, but if you go to a hearing with a history of confrontation and lack of cooperation, that will inevitability be factored into any judgement the hearing officer makes.

What Can You Do to Maintain an Appropriate Relationship?

In short, there is no downside to being polite, even if you feel that the courtesy is not reciprocal. To that end, we have the following suggestions to help you maintain an appropriate relationship with school personnel:

  1. Treat the people working with your child as you would like to be treated. What you perceive as lack of cooperation may be the result of being overwhelmed by having to work with too many students or being hamstrung by lack of resources, rather than an intentional slight. It doesn’t help to be rude or dismissive of people who are doing their best in less than ideal circumstances.
  2. Don’t assume that school personnel understand all the details of your child’s disability. Be willing to spend some time educating Team members about your child’s particular needs. Sometimes parents mistake a lack of understanding as a lack of cooperation.
  3. Prioritize what is most important for your child’s education and do not make a habit of complaining about small procedural errors or trying to control all the details of your child’s school life. Save your energy and credibility for the important problems. Ask yourself if you would rather be angry or get appropriate services for your child.
  4. Find a forum other than a Team meeting to express anger or frustration. Use a spouse or trusted friend for animated discussions about things you feel the school is not doing appropriately. A trained advocate can be a good sounding board for your concerns as well as a source of advice for how to proceed when you encounter roadblocks.
  5. Keep an open mind at Team meetings and consider all suggestions thoughtfully, even ones with which you might disagree. If you find a discussion over a disagreement becoming too heated, or if a Team member starts to lose emotional control, ask for a short break or, if necessary, ask that the meeting be reconvened at a later date.
  6. Even if your school is not following the letter of the special education laws, your job is to insure that your child gets the help he or she needs, not to point out the school’s failures, or worse, try to get the school to admit its failures. School districts, like all bureaucracies, will hardly ever do that. To this end, concentrate on the solutions to problems, not on the failure that might have caused the problem.

None of this means that you have to accept improper behavior from school personnel or not stand up for the rights of your child. Your goal is to create a positive working environment in which you can advocate for your child and successfully negotiate for appropriate services and supports.

Judith Canty Graves and Carson Graves

The above article is adapted from Chapter 2 of Parents Have the Power to Make Special Education Work.

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1. Wright, Pam and Pete Wright, From Emotions to Advocacy, Second Edition, (Hartfield, VA: Harbor House Press, 1999), p. 41.
2. WrightsLaw, “Parent/School Relationship: Marriage Without the Possibility of Divorce.

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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Getting FAPE: Asking the Right Questions

In a recent conversation, a parent asked us a question that was hard to answer. Her son’s school was changing his grades after they had been posted on the school’s website, raising them in an apparent effort to make it appear that he was making more effective progress than he actually was. She wanted to know what to do about it. The brief conversation didn’t leave enough time to find out all the details, and aside from recommending that she file a complaint with her state’s department of education, we really had no answer for her. This wasn’t very helpful, as complaints like this usually take a long time to investigate, and rarely, in our experience, do they result in more than a metaphoric slap on the wrist for the school district. In fact, the mother told us that the previous year she had filed a similar complaint and the school had been found out of compliance, yet the school had not changed its behavior.

A Problem, or Only a Symptom of the Problem?

After the conversation, it finally hit us why the question didn’t have an obvious answer. The grade changing tactic by the school was only a symptom of the problem. The actual problem was that the school wasn’t providing an appropriate education. Changing grades was simply an admission that the school couldn’t (or wouldn’t) provide that education. Getting the school to stop changing the grades, even if it had been willing to do so, would by itself do nothing to improve the child’s education.

This highlights a situation that we have seen occur many times in other families and even experienced ourselves. If you don’t define a problem correctly and ask the right questions, you can’t know how to fix it.

When We Didn’t Ask the Right Questions

In elementary school, when our son wasn’t learning to read with his peers, we were told by the school’s reading specialist that he needed a tutoring methodology called Orton-Gillingham. This was, in fact, the proper researched-based approach for our son, and we agreed to it. What we missed was that his IEP limited the amount of time he was tutored in the Orton-Gillingham method so that he wasn’t able to make effective progress learning to read. As a result, each grading period he fell further behind the other students in his class in all subjects that required reading and felt increasingly frustrated.

Our problem was that we were only paying attention to the Orton-Gillingham instruction, and missed connecting it to the fact that it wasn’t being given often enough. This is a common mistake that parents make when approving their child’s IEPs, and is one reason we recommend that IEP goals include service delivery information in the text of the goal itself and not just in the service delivery grid.

To compound the problem, while our son was struggling to learn to read we investigated a private school near us that specialized in teaching the Orton-Gillingham method as an integral part of their overall curriculum. Reassured by the public school, however, that our son was getting the “same” instruction provided by the expensive private school, we felt satisfied and didn’t ask any further questions. Only later did we realize that the problem wasn’t the type of instruction our son was receiving, but how much of it he was being given. Had we been asking the right questions about frequency and duration, we would have either focused on getting him additional tutoring or placing him at the private school that was better prepared to provide the amount of service that he needed.

So What Was the Right Question?

Getting back to the mother’s question, her frustration came from believing that the problem was the school’s changing her son’s grades, not the fact that this was simply evidence that the school wasn’t providing FAPE. Her question should have been “What can the school do to give my son an appropriate education?” The answer could then be defined as either getting the school to provide a more appropriate curriculum and teachers who were properly trained to understand her son’s needs, or an out-of-district placement at a school better prepared to teach him.

If such a solution couldn’t be negotiated informally, then the mother could have used the grade manipulation as evidence in a mediation or a due process hearing. Of course, pursuing a due process remedy is not a simple task and has no certain outcome, but the evidence was strong (she had screen shots of the “before” and “after” grades from the school’s website). In short, she had caught the school trying to hide a lack of effective progress, an apparent violation of IDEA. But focusing on the violation without addressing the underlying cause wasn’t going to improve the educational outcome.

The Lesson to Learn

The lesson is that to solve a problem, you first have to define it properly and ask the right questions. This is true in almost every situation, but it is especially important for parents in special education where the emotional aspects of their child’s situation can misdirect parents into focusing on the symptoms and not the root problems.

Judith Canty Graves and Carson Graves

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