A Special Mother Excerpt:: Advocacy: Advice from an Expert

A Special Mother: Getting Through the Early Days of a Child's Diagnosis of Learning Disabilities or Related Disorders

by Anne Ford, with John Richard-Thompson

Chapter 16
Advocacy: Advice from an Expert

Candace Cortiella, introduced in an earlier chapter, is the director of The Advocacy Institute, a nonprofit organization that develops projects, products, and services aimed at improving outcomes for children with disabilities—not just learning disabilities, but all disabilities. One of the institute’s core activities is training Special Education advocates who work on behalf of parents and families. Candace is also the author of the IDEA Parent Guide so often cited in previous chapters, and I can think of no better person to talk to about the world of Special Education advocacy and the benefits and drawbacks of obtaining the services of an advocate for your child.

I began by asking what propelled Candace into the role of advocate.

“ It is totally due to my daughter,” she said. “My passion and devotion to advocacy can be traced back to having a young one who, at preschool age, was showing signs of developmental delay and a ‘lack of school readiness,’ as they called it in those days. That set into motion a series of extremely traumatic events that took me and my entire family down a long and difficult road.”

“ Essentially you were once one of the mothers we are trying to reach with this book,” I said. “And I assume you remember all the confusion and the fear and the panic these mothers feel.”

“ Yes, and the sorrow.”

“ You have knowledge and experience from the point of view of both a mother and an advocate. Let’s say you have just met a mother who is in the situation you were back when your child was in school. How would that mother find an advocate?”

“ First, I would like to point out that a lot of mothers who think they need an advocate don’t necessarily need one. Getting an advocate is not a decision that should be made lightly because injecting an advocate into a situation has both positive and negative consequences.”

“ What most often influences parents to make the very serious decision to hire an advocate?” I asked.

“ Usually, it’s when they feel that things aren’t going right and that they don’t have the capacity to get things done—whether it’s knowledge, information, or the time and energy to deal with it themselves and move things along toward the results they’re looking for. In some cases, advocates can very much stay in the background, and the parents can continue to play the role of facilitator with regard to whatever they are trying to accomplish. In other situations, advocates play a more direct role and accompany the parents to meetings and partake in sessions with private providers, school officials, and evaluators to become another set of eyes and ears.”

“ Let’s look at both of those scenarios separately,” I said. “Let’s say a mother feels overwhelmed by the situation with her child. She’s received the evaluation results and simply cannot understand what it all means. Would it then be possible to hire an advocate who could help her without the school knowing?”

“ Yes, and often that is the best way to handle things. But if we go with the example you used of the mother not being able to understand the results of an evaluation, it is important to let parents know that schools have an obligation to provide parents with information that they can understand. It’s very appropriate for a parent to say to a school, ‘I need an opportunity to have an interpretive meeting about this evaluation before we go further in this process.’ I was fortunate in that my daughter attended a school district that was rather large and sophisticated, and that practice was routine. They wanted parents to understand the evaluation results.

“ So, first of all, parents should understand that they have the right to ask for interpretations of test results in understandable terms. Secondly, there is a whole system of Parent Training and Information Centers around the country to help parents. These PTI centers are funded by the federal government with IDEA dollars. Their mission is to help parents understand this whole morass of Special Education. So there are ways parents can seek that kind of help before they get to the point where they would need an advocate. But let’s say they need to find an advocate. In some cases advocates are available through the PTI centers, or through a disability-specific organization or association—so there is a way to get an advocate without any cost. But in a lot of cases, advocates have to charge because this is how they make their living. But I hate to see parents pay for something when there are free alternatives.”

“ How much might an advocate charge?”

“ I really can’t say because there is such a vast range. There are people who try to keep their fees very low, and then there are people who work as advocates who also happen to be attorneys or well-trained educational diagnosticians. They bring a set of skills to the table, and they’re going to charge more. As trainers of advocates, we have always encouraged them to do some pro bono work through the course of a year.”

“ If a family simply does not have the money for an advocate, can’t they also approach their local Legal Aid Society?”

“ That’s right,” Candace said. “There are also many Education Law centers around the country that work on all kinds of issues related to the education of children from low-income and minority families. They very often will have a Special Education component to them.”

“ So if a mother feels overwhelmed, she may want an advocate. But it sounds like you are strongly suggesting that she try to do as much as she can before taking that step.”

“ Absolutely.”

“ What is the best way to do that?” I asked. “How can a mother best educate herself about these issues?”

“ The first thing to do is to take advantage of this network of Parent Training and Information Centers that I mentioned earlier. Educating parents about these issues is their purpose and their mission. There is at least one in every state, and some of the larger states have several. There are about a hundred all together. That is the first step parents should take. One of the reasons the PTI centers are so helpful is because, even though there is this federal law that governs Special Education, every state has its own particular policies and procedures put together in order to implement its Special Education obligations. This overlay of policies and procedures varies from state to state. For instance, I can learn about Special Education in Virginia and then move to California and all the terms are going to be different and there will be differences in the various policies. The training centers in each particular state have an expertise in that overlay.”

A state-by-state listing of these centers can be found at www.ld.org/aspecialmother.

“ You said there were both positive and negative aspects of having an advocate,” I said. “The positive ones are pretty clear. This is someone who can guide you through the process. You can have this done without the school’s knowledge, or without the advocate going to the school.”

“ That’s right,” Candace said. “If parents want to hire an advocate in more of a consulting role, then there would certainly be no reason for them to have to divulge to the school that they are working with an advocate.”

“ What is the downside of divulging to the school?” I asked. “And is this one of the negative aspects of hiring an advocate?”

“ Sometimes, yes. Unfortunately, some schools consider parents bringing an advocate in to their case as a display of animosity. They can change their attitude and become quite defensive about the whole thing, which is a shame because, in a lot of cases, the advocate can be very helpful to the school as well as the parents. For example, when I was a practicing Special Ed advocate, it wasn’t unusual for me to tell parents that their expectations were too high for what they were asking the school to do. Schools have an obligation, but those obligations also have parameters. Some parents think that the sky is the limit when it comes to the obligations of the school, and that is not the case. Sometimes the parents were more prepared to accept that from me than they were from the school.”

“ Sometimes a parent can become quite bitter and angry over the perceived treatment by the school,” I said. “By no means am I saying they don’t have legitimate concerns, but somewhere along the line the process broke down and was replaced by a completely antagonistic relationship. One mother I heard about filed so many disputes that everything was tied up for years, and the problems were kicked down the road a ways, but didn’t go away. Eventually the school would not deal with her anymore, and she had to hire an advocate.”

“ There are times when that happens,” Candace said. “For parents in those cases, winning their point becomes more important than what is best for the child.”

“ Some parents can become mired in these negative feelings,” I added. “Something starts it—probably an issue that they feel the school didn’t handle well. And maybe the school didn’t handle it well, but then they begin to believe the school is handling nothing well, or that it is actively out to deny their child the services needed. There’s no question that dealing with the school system can be a frustrating experience at times, but to fall into this quagmire of anger and resentment can do more damage than good. Do you run into this type of situation?”

“ Yes, I do,” Candace said. “And, of course, if you have a parent who also happens to be a professional of some kind, such as an attorney, that can present its own set of problems. They start becoming their own client in an area of law they don’t know, and that can be difficult.”

“ One of our Special Mothers is an attorney, but she used her position in a positive way. She simply wrote her letters on her legal letterhead, and that seemed to get things moving. But in the cases we discussed, when all communication has broken down, can an advocate help the situation?”

“ Sometimes, but certainly not always. We have had situations when we have had to essentially sever our working relationship with some parents. They won’t listen, or follow our guidance. We have to say, ‘We can’t work with you. Your demands are unfounded. The manner in which you conduct yourself with the school people is doing nothing but deteriorating the relationship. It’s doing nothing to benefit your child, and so you need to find someone else.’”

“ What happens in that situation?” I asked. “What happens to that child? Do they just linger there without help?”

“ Sometimes they do, yes. Sometimes parents take their kids out of the school and put them somewhere else, and then they continue to fight their battle. But in a lot of cases, the kids stay in whatever situation the parent is objecting to. So if they argue about it for two years, then the child is still there and not getting what the parents are arguing for. In cases like that, all the parents are doing is embittering themselves to the school district to the point where the school simply won’t speak to them.”

“ What are some of the most common challenges parents face?”

“ The thing that motivates parents to go to an advocate is essentially this: they are not getting whatever it is they want. There is no set pattern to the things parents want. In other words, it is difficult to pinpoint a single issue that is considered the greatest challenge. A lot of times parents want a more inclusive approach to the programming. I’m not talking only about LD here, but all disabilities. I think that is probably one of the most common issues for parents. They don’t want the segregated placement that schools give them. They want something that is more inclusive.”

“ And what would you say is the most difficult to solve?”

“ Again, the issue of inclusion is probably the most difficult,” Candace said. “In most cases, if that is the issue, then the reason it is an issue is because the school or the district has always taken the segregated approach to children with disabilities. Therefore, getting what you want involves systemic change in the district. In fact, the most rewarding part of my work as an advocate over the years is when you help change something not only for one child but for a whole group of children. So systemic advocacy efforts are really at the heart of our work because we want things to be made better for all children. If we have six million children in Special Education in this country and we change it one child at a time, we’re never going to live long enough to help them all. If we can improve the school experience of all children with disabilities, then we have made huge changes.”

“ What is the success rate for a parent who wants a more inclusive environment for her child?” I asked.

Candace hesitated. “That’s a little difficult to answer,” she said.

“ Does it vary by school district?”

“ Yes. Some simply refuse to do it.”

“ Does a parent have any recourse in that case?”

“ The recourse is the Procedural Safeguards that are embedded in IDEA. This is also the level where you file a due process complaint, and that is not something to take lightly. This level of action is also the only one for which we have data, and that data shows that parents do not usually prevail. Most often the school prevails. So again, good advocates generally will not be the ones who are most eager to file due process. Rather, they try to solve the conflict at a much lower, informal level. That is why I had a hard time answering your question about the rate of success. We don’t have data on how frequently disputes are settled at an informal level, nor do we have any real data on how successful those settlements might be.”

“ I spoke to one mother who disagreed with something on her child’s IEP and was told that she was perfectly free to dispute the issue, but it could take up to a year to solve the problem,” I said. “She looked at her options and decided she didn’t want to spend a year on what should have been a simple thing, so she was able to settle it informally. Is it true that something like a dispute can take up to a year or longer?”

“ It shouldn’t, but it can. And again, at the Advocacy Institute the person we would consider to be an effective advocate is not someone who beats the drum for parents to file a dispute right away. Filing a dispute puts your relationship with the school at a whole different level. The state gets involved. There is a timeline that starts ticking. This is a quasi-legal procedure, which is not to be taken lightly. And I have to tell you, a lot of parents will tell you with good reason that they are concerned that if they go to that level, the school may retaliate in some way, including possibly against their child. Just imagine it: you are having a quasi-legal process going on about your child, and at the same time you send the child there every day to interact with the same people you’re in a dispute with.”

“ Why would someone go through all that?” I asked.

“ What has become in vogue lately, mostly because of a major Supreme Court win, is that you take your child out of the public school and put the child in a private school, and then you sue the public school for tuition reimbursement. Those private school settings can be $30,000 to $40,000 a year. The parent can go back to the public school and say, ‘You denied my child an appropriate education, which they are now getting in this private setting, therefore you must reimburse me.’ But the attorneys who have a reputation for taking and winning those kinds of cases will usually say, ‘All right, we’ll get started on this as soon as you take your kid out of the public school.’ As they develop their case, they don’t want to have to be concerned with retribution against the child.”

“ Is it common for a parent to win in such cases?”

“ Despite a couple of Supreme Court decisions finding in favor of parents in tuition reimbursement cases—Forest Grove School District v. T.A., 2009, and Florence County School District Four v. Shannon Carter, 1993—these cases take many years and lots of resources to win. Fortunately, these favorable decisions serve as reminders to schools to make every effort to provide a program that delivers results for the student. Parents, in turn, should try to work with schools to develop a program that provides adequate progress.”

I asked Candace if it is common (in her experience) for a school to reject services a parent feels the child needs.

“ Oh, yes!” she exclaimed. “All the time.”

“ If that happens, what is the sequence of actions a parent should take?”

“ It is a little dangerous to suggest that there is one pattern, because it is so dependent on the circumstances and on the size and complexity of what the parent is asking for. When we deal with parents around these issues, we have to be very careful, because an issue that seems enormous to a parent can seem rather trivial from my perspective as an advocate. The significance of what they want and are not getting is all in the eye of the beholder. For instance, a parent may want a full-time one-on-one aide, which can be a big issue for everybody involved. For the school it’s a huge expense, and they may feel—with good reason, by the way—that they can address the child’s needs without plastering an individual to them all day long. There is no specific set of services that are prescribed by the law. The law says only that you must provide the child with a free, appropriate public education, and that can leave a lot of room for the school to maneuver.”

“ That is an important point,” I said. “It puts the school on a pretty strong footing. So let’s say that a mother has heard that a certain type of service is effective for one child, and decides that is the type of service her own child should get—but the school, with legitimate reason, believes otherwise. They believe there is a way to do the same thing with less expense. The school’s job is then to convince the mother that its method is equally successful, and the mother’s job is to try to keep an open mind about this. She shouldn’t just dig in her heels and say, ‘No, I want this.’”

“ That’s right,” Candace said.

“ That will be tough for some parents to hear, especially if they feel the school hasn’t been upfront with them on other issues. It’s hard for them to accept that the school is telling the truth.”

“ That’s true. And also, for that mother, it becomes an issue of saying, ‘Okay, if I don’t get this for my child, what will be the variance in how my child progresses?’”

“ What do you mean?” I asked.

“ Parents can easily get caught up in the details and lose sight of the big picture. At the end of the day, the important thing for parents is the progress made by the child, not whether or not that progress is made with whatever type of service the parent originally asked for. So if the school can give you the same progress, and it is appropriate and adequate for seventy-five cents as opposed to a dollar, then the parent really doesn’t have much of a position on which to argue the need for the more expensive service.”

“ If a mother in that circumstance brought this to a dispute and the child’s progress with the less expensive service was proven, would the parent lose?”

“ Absolutely.”

“ So if a parent is insisting on something and the school is insisting on another thing that is as effective but less expensive, maybe that is the time to consult an advocate—even if it is only on this one issue. You don’t need to bring the advocate into the school. It could be just a matter of asking the advocate’s opinion to ease the parent’s mind on whether or not the school is telling the truth and providing an equally valid service.”

“ Yes. That would absolutely be appropriate.”

“ I believe it comes down to a matter of trust in many cases,” I said. “Some mothers simply do not believe what the school is telling them because they know that the school has a financial incentive to avoid providing certain services. For these mothers, it can be extremely difficult to get beyond that and accept that the school truly is doing something for the child’s benefit as opposed to the school’s benefit.”

“ That’s true. And the fact is, public schools are always operating within the constraints of their finances.”

“ One of our Special Mothers, Helen, was never told that she had to officially ask to have her child evaluated. She was operating under the assumption that the school would step forward and tell her what she needed to do. From that point on, she couldn’t shake the feeling that the school was not going to tell her things that were in the best interests of her child.”

“ The situation you just described goes further than the school simply neglecting to tell her,” Candace said. “That school was actually violating their obligations under IDEA. Public schools have an affirmative obligation to identify and serve children with disabilities. It is not simply a matter of whether or not the parent asks. It goes much further than that. Denial of services and lack of responsiveness to parental concern is a very significant issue for schools. In fact, it is at the heart of that Supreme Court decision I mentioned earlier, Forest Grove v. T.A., which was decided only in June 2009. The school district lost because it failed to be responsive to the parents’ concerns and failed to identify and serve the youngster. It was a tuition reimbursement case, but the court’s decision was very much driven by the fact that the school was callous and completely disregarded the concerns of the parents. And I’ll tell you something, this Supreme Court decision has sent chills up the backs of every school district in this country!”

“ This mother I mentioned faced a great deal of conflict and had to educate herself about the issues.”

“ She probably had to educate the school district, too. This is an important point. Parents should not presume that the schools always know fully and with thorough understanding what their obligations are, in terms of Special Education. The truth is that they don’t always know.”

“ This notion might influence the way a parent approaches the school,” I said. “For instance, when we talk about conflict resolution, rather than going into the school and throwing accusations around, it might be a good idea to start off by saying, ‘Are you aware that you have this or that obligation?’ In spite of all the horror stories we hear, we must emphasize that schools are not the enemy. Many teachers really do step forward and try to do the best they can.”

“ That is absolutely true,” Candace said. “An informed parent can certainly be of help to both the school and the student. And again, the best way to become an informed parent is to take advantage of the resources provided by the Parent Training and Information Centers because they are federally funded and free to parents. That’s what they are there for. The PTI centers will talk to you about the whole legal framework. To get disability-specific information, parents also need to rely on organizations such as the National Center for Learning Disabilities. You can find so much information online.”

“ There is a wealth of information out there,” I said. “Parents have only to go to their computer to access it.”

In that light, I would also like to mention the work of Pamela and Peter Wright, founders of the Wrightslaw Web site (www.wrightslaw.com). For years, whenever a legal question came up from one of the thousands of mothers who called NCLD, we always directed them to the Wrights. They are experts in the field of Special Education law and have written several books. Many mothers have found their book From Emotions to Advocacy to be particularly helpful.

For more about the work of the Advocacy Institute and advocacy in general, please visit their Web site at www.advocacyinstitute.org.

Excerpted from A Special Mother: Getting Through the Early Days of a Child's Diagnosis of Learning Disabilities or Related Disorders
by Anne Ford, with John Richard-Thompson
Copyright © 2010 Anne Ford. All rights reserved.
Reprinted by permission of Newmarket Press, 18 East 48 Street, New York, NY 10017, www.newmarketpress.com