The following is a discussion of the IEP process that appeared on Stutt-L in October 2001. It was precipitated by one parent relating her experiences in trying to get services for her daughter who stutters. It is a thoughtful and insightful expression which relates frustration from a very intelligent and caring mother.
A speech-language pathologist prepared an equally thoughtful and insightful response. Their discussion is included here, with their permission, for professionals and consumers to gain understanding from both perspectives.
An interesting caveat was provided by an adult who stutters.
From the parent of a child who stutters
On to my soapbox...
I welcome the opportunity to let someone who will be working and dealing with parents what NOT to do!! BRAVO for asking, and please pass my experiences on to other students to sensitize them to the issues.
When I was in speech therapy as a child (30 years ago) it was no big deal - school picked up on it, school provided a wonderful therapist (Mrs. Nush, I remember her to this day! Nicest person in the world!) and my problem was pretty much resolved with no negative feelings - only positive ones.
Today, with my stuttering daughter....Very, very different experience.
Experience #1:First, the school did not volunteer anything. When I requested an evaluation, I was told "your family situation will be checked out too". I said fine, but I can see how this would make people not want to continue with the process - it just set an odd and somewhat defensive tone. Then I received a cryptic letter from the school mentioning scholastic and behavior problems and I was to report at 9:30 AM on such and such a day - nothing about speech therapy. When I called to find out what it was about, I was told it was in reference to the speech evaluation I requested. When I questioned the letter - they said "oh, it's just a form letter". When I mentioned I worked and left the house by 6:30 AM and could not on a moment's notice drop my entire work schedule, they seemed surprised.
Step back - parent view: First, the letter accuses a sweet, compliant, good student of "scholastic and/or behavior problems" and never mentions the reason for the evaluation - speech! This approach is custom made to put any parent on the automatic defensive. Letters should clearly state what is to be communicated, not just pulled from a file and sent. Review form letters for appropriateness or don't use them!! Second, the parent and child are the CUSTOMER, to be treated with some respect and courtesy. Parents have jobs (some fairly high level professionals too, by the way - moms as well as dads) and schedules are set a month in advance. Call the parent and ask for a couple of times they can attend a meeting - don't just set one up well after most people's commute and working day have begun and tell them you expect them to be there with less than a week's notice. I'd be more than willing to work on flexing my schedule if asked like an adult, not told like a child.
Experience #2: Next, the review meeting after the evaluation. I was told my child met the legal requirements for speech therapy as far as her speech was concerned. Her disfluencies were documented. BUT, since she didn't have "emotional" or "behavioral" or "scholastic" problems too, she "didn't meet the legal requirements" for the school to treat her. I was given some materials and told to go home and treat her myself. As probably all of you know (but I didn't at the time) a parent with a handful of pamphlets (much of which was discussing how the parent deals with the stuttering, how this would help me provide therapy to my child is beyond me) has no chance at all of successfully treating a stuttering child. At the time I had a gut feeling I was being set up for my daughter not to receive services, but couldn't put my finger on exactly what was wrong...
Parent 20-20 hindsight: Either a) therapist didn't feel comfortable or competent to treat a stuttering child and didn't want to admit it or b) school didn't want to spend the money from their budget. Or possibly some other factor I'm not aware of. Either way, as a parent I get REALLY UPSET when I realize I have been played for a fool by the school administration I trusted. I've since been informed by a knowledgeable specialist in speech therapy (found through this list) that my daughter does indeed meet the legal standards because she came and told me that her stuttering bothered her, she was teased by other children, and she, herself was requesting help. Don't for a minute think that this information was not given to the school - it was - both in writing and orally!
As a therapist, if you know the school is required to provide services, make sure the administration knows it - or make sure the parent knows it. Nothing worse, from a parent view, is losing several months of time that could have been spent in speech therapy due to misleading information given by the school. I'd much have preferred being told honestly "I can't provide the help she needs, please contact XYZ for the specialized speech therapy". Deal with me like a competent adult, don't mislead me and expect me not to find out.
To add insult to injury, I have gone back to the school and told them what I have found out about how futile it is to tell a parent to do stuttering therapy on their own. The principal's reaction "of course it is". WHAT! She, who sat in the meetings we had, who endorsed the recommendation that I treat my child myself somehow, tells me she knew all the time that I was sent to tilt at windmills? This is not the way to build good parent-school relationships... A formerly compliant and helpful parent is now suspicious and distrustful of the school system.
Also, as a speech therapist, think long and hard about alluding to unsubstantiated "emotional problems" in children. Although I would not rule out that emotional issues can cause a host of various problems (I am a psychologist after all), I wouldn't be too quick to jump *first* to that conclusion for stuttering. Seems a no brainer to me that having a family history on both sides of speech problems and stuttering could indicate heredity rather than "emotional" issues at play. This knee-jerk response of "it must be an emotional problem" is somewhat akin to the old psychological reasoning to "blame the cold/bad mommy" anytime a child had an emotional problem. So much research has been done since then! Also, I'd be more than willing to bet that "emotional" issues come as a result of, not a cause, of stuttering.
I hope in some small way my experiences can help illustrate how difficult it is to be a parent dealing with a school bureaucracy and how speech therapists can make a huge difference in the experiences both students and parents have. . . .
From Louise Heite, a speech-language pathologist
Experience #1: First, the school did not volunteer anything.
Most of the time, school personnel are forbidden from volunteering anything. The rule of thumb is that if a school employee makes a suggestion, the school is obligated to pay for actions resulting from it. Period. The district might not be reimbursed by the Federal programs that are supposed to partially pay for special services if the entire referral, child study/multidisciplinary team and IEP recommendation process is not followed and documented. A recommendation out of turn may produce that result. A school employee who volunteers suggestions outside of the process might very well find him- or herself looking for a job when contract time comes up.
When I requested an evaluation, I was told "your family situation will be checked out too
Depending on district policy, this is also expected. Most districts require the school nurse, social worker, and psychologist to sign off on referrals, even if they are "just" for a speech problem. Unless there is reason to believe that the child is being abused or neglected, these are just pro forma reviews involving searching the records for formal complaints. However, the school should warn parents that that will have to be done.
Then I received a cryptic letter ...I was to report at 9:30 AM on such and such a day... When I called to find out what it was about, I was told it was in reference to the speech evaluation I requested. When I questioned the letter - they said "oh, it's just a form letter". When I mentioned I worked and left the house by 6:30 AM and could not on a moment's notice drop my entire work schedule, they seemed surprised.
Although the school appears to have been rather unprofessional in this instance, the scheduling of IEP meetings is in general incredibly clumsy. The Feds in their wisdom have required the presence of several professionals at these meetings, who all also have other responsibilities; but the same Federal authority does not provide money for salaries to enable them to stay past a normal workday. School employees are required to be present in their classes, or doing therapy or paperwork, for eight hours a day, just like everyone else. Therefore, they schedule meetings at their own convenience. Most professionals do. Try getting your HMO primary care doctor to schedule an appointment outside of his or her regular scheduled work hours!
That said, your first meeting notification should have given you ten days notice, in case you needed to reschedule. However, under some interpretations of the law, the ten day clock begins to tick with your first inquiry. That means ten days to do the preliminary informal reviews of the case, schedule all the required personnel to meet (and perhaps find substitutes to perform their regular duties) and then contact you. There may not have been another time when everyone required to attend could meet.
First, the letter accuses a sweet, compliant, good student of "scholastic and/or behavior problems"
Federal special ed money is not given for speech unless it produces what your district calls "scholastic and/or behavior problems." Nor is it given for other kinds of remediation. A child with a bad limp, weak eyes, or other disability would also not be eligible for services unless the condition produced "scholastic and/or behavior problems." The old model of schools providing speech therapy as something of a matter of course (if it was given at all) is long gone. A speech problem must be documented to have a negative impact on the child's ability to function in the classroom or in the normal social milieu of school. Some of this is a jargon problem. A negative impact on a child's ability to take part in school social activities is technically a behavior problem, even if the problematic behavior is nondisruptive, such as being too quiet.
Second, the parent and child are the CUSTOMER, to be treated with some respect and courtesy.
I wish this were the case, but as the system is set up, the parent is automatically an adversary. Each parent encounter in special services must be treated as a potential lawsuit, because some people do go that route. That puts people who should be on the same team into wary, warring camps. I hate it, but I have to live with it.
You do not seem to be this kind of parent, but there are some who get a little power-happy and seem to thoroughly enjoy simply dictating to special services personnel exactly what they will do, and when, without regard for the havoc their demands may wreak not only on the lives of the school personnel but also on other kids who also need services. Heck, if those parents know that much, they ought to keep the kid home and do the job themselves! That kind of dictatorial behavior on the part of parents causes staff burnout more than any other single factor, including fairly low salaries compared to similar specialists in other settings.
Experience #2: Next, the review meeting after the evaluation. I was told my child met the legal requirements for speech therapy as far as her speech was concerned. Her disfluencies were documented. BUT, since she didn't have "emotional" or "behavioral" or "scholastic" problems too, she "didn't meet the legal requirements" for the school to treat her.
That is correct. If the school has no documentation of academic, social, or psychological problems stemming directly from her stuttering, they cannot count her services towards Federal special services reimbursement. If a kid who stutters can still make B's and C's, does not cut up in class, and participates in school-sponsored activities, they are usually determined to have a disability but not a handicap. Jargon again - disability is what you can't do because of your physical or psychological makeup, handicap is what society won't let you do, or try, because of assumptions people make based on your physical or psychological makeup or refusal to make appropriate accommodations. If a district claims reimbursement for a child who has a disability but not a handicap, they may be liable for a very hefty fine and loss of Federal funds for special education. That's a big price to pay for an error, so school districts tend to err on the side of caution in these calls.
This is why I do an extensive investigation of a child's classroom and social performance when I do a stuttering evaluation. I look for refusal to participate in discussions, take leadership roles, complete oral assignments, or take part in group activities. This is something the slp has to do personally, as most teachers don't recognize the effects of stuttering unless they are told what to look for. There are a few formal instruments that help but the best tool is to interview the teachers in detail, observe the child in several different situations, and inventory the child's perception of the effect of stuttering on his or her life. A simple stuttering event inventory won't do.
Parent 20-20 hindsight: Either a) therapist didn't feel comfortable or competent to treat a stuttering child and didn't want to admit it or b) school didn't want to spend the money from their budget. Or possibly some other factor I'm not aware of.
I'd vote for the "other" factor myself. The need was not really documented, as per below:
I've since been informed by a knowledgeable specialist in speech therapy that my daughter does indeed meet the legal standards because she came and told me that her stuttering bothered her, she was teased by other children, and she, herself was requesting help. Don't for a minute think that this information was not given to the school - it was - both in writing and orally!
You have every right to request a new IEP process based on this new information. My guess is that the teachers, seeing a quiet, compliant child who is passing her classes, didn't perceive a classroom problem. The slp probably doesn't have enough experience with documenting nonacademic IEP factors to be able to do it effectively. Maybe he or she didn't feel competent to handle stuttering, but I suspect that that was a secondary consideration at best. The cost of treating one kid with a fairly inexpensive disorder really wouldn't have been much of a factor.
I hope in some small way my experiences can help illustrate how difficult it is to be a parent dealing with a school bureaucracy and how speech therapists can make a huge difference in the experiences both students and parents have. . . .
And I hope that I have explained, at least partially, how a school district's hands may be tied unless the correct documentation is provided to justify services. It's too bad that you went into the situation with a paradigm that just doesn't work any more. Believe me, the school is going to be just as wary of you now as you are of the school. I hope you can reinstate the IEP process using your new documentation, and in the process repair your relationship with the school. You will all benefit if you can - your daughter most of all.
Now for some general words about the environment surrounding school services. Budgets are tight, some school slp's have caseloads of as many as 80 kids, and classrooms are expected to accept "mainstream" children who can't find their way across the room without an adult supervising every move. Federal requirements for documentation are burdensome at best, and maddening at worst. All of that has raised the bar for eligibility for services to the point that many of the traditional speech clients drop off the bottom. If you go into an IEP conference expecting that your child will get speech simply because she needs it, you will be in for the kind of nasty surprise that you got.
Anyone who is contemplating initiating an IEP process needs to become very familiar with the law and with the mare's nest of regulations surrounding it. Try to work with the system rather than take an adversarial stance. The people who are your adversaries are after all responsible for your child's education and welfare for six or seven hours of that child's day. You don't want people who are angry with you in that situation. Schoolfolk are human, and even if they make a sincere effort not to let their arguments with you interfere with your child's education, there will probably be some unintentional spillover. School personnel really are too busy to engage in malice.
When dealing with a disorder whose effects are more likely to be social than academic, it is very important to provide complete documentation of those effects. There is a lot of information on the Internet. You can find all the regulations concerning the IEP procedure by searching the Federal Register online (if you are a masochist or if you enjoy reading law). Find your district's regulations. You can request a statement of parents' rights, and if you begin the process the district must offer you a copy every time they have formal contact with you. Some states have that information online. Boring as it is, it's a good idea to read that stuff if you expect to be able to participate in the process intelligently and without undue disappointment or confusion.
If you've gotten this far, thanks for your patience. The best thing that could happen to special services education would be to streamline the IEP process, to trust the professionals who have to implement services under the regulations to use intelligent, professional judgment most of the time. The current process really doesn't do much but proliferate paperwork, and can cause genuine delays in the initiation of services. I hope that in time it will get better, but that kind of optimism may be a terminal condition.
From Marty Jezer, an adult who stutters
From the parent of a child who stutters
First, many of the problems I've encountered is in the "How" the system is implemented. For example, the "your family situation will be checked out too" comment. LH makes a good point - perhaps a social worker, psychologist, etc. must routinely sign off. That's OK. What's NOT ok is simply having a school secretary say the above quote without any explanation of any type. The simple sentence or two LH added would make all the difference. It goes from a perceived threat (retaliation for asking for services?) to a simple routine process. Parents can and do understand reasoning - not necessarily lengthy - just give a simple, direct explanation.
*Point -- How you communicate makes ALL the difference in the world.
I do take some umbrage at the comment "they schedule meetings at their own convenience. Most professionals do". That is exactly the attitude that drives parents nuts. As a working professional (yes, for the federal government too) I am in meetings constantly. How do we set them up with other agencies, outside vendors, and union leaders? I'll tell you what we DON'T do - send them a letter saying I expect you here at this day and time!! Instead, we email or give a quick call, to inquire - "hey, can you check your schedule, what works for you?" These meetings are not outside of the work day, nor does it take more than a minute or two to inquire. The consideration provided by this quick touch-base is more than appreciated by all parties I would think. I don't perceive the normal consideration I would even afford a vendor (presumably at my beck and call) outside the normal call of duty for me. As for "other professionals" haven't you ever called a physician's office for an appointment and requested "can we do this in the afternoon instead of the morning?". There is flex in almost everyone's 8 hour day.
*Point -- All I'm asking is what I consider to be "normal business consideration". Nothing more, but nothing less either.
Respect & Courtesy in the current legal environment - "the parent is automatically the adversary". This again is a case where it doesn't have to be that way. Without getting too detailed, in the position I hold I am responsible for a) avoiding litigation b) dealing with it as it happens. Every complaint I respond to has the potential for blowing up into a class action suit. Not a pleasant prospect. Believe me, I choose my words with the greatest of care as I know the possibility exists they may be read back to me in court!! This is similar to what the school seems to be anticipating. HOWEVER, this does not mean I don't try to be as helpful and encouraging as possible (without promising a thing). Does this take some thought, skill and practice? Yes. And it takes putting myself in the position of the person who complained - how do they feel? Where are they coming from? What do they want? What can I offer? Yes.
My personal feeling is that if I treat everyone with courtesy and respect I AVOID more lawsuits by being patient and understanding. Ever wonder why some parents become dictatorial and demanding? Perhaps how they are treated by the school system has made them that way. I started out thinking the school administration wanted what was the best for my child and now I have BECOME suspicious, defensive and demanding. I didn't start out that way - I am what they have made me!
*Point - even in an adversarial environment, the golden rule applies and can even help you avoid trouble.
"Not meeting legal requirements"
Actually, your comments on this are both right and wrong. If there were really "No emotional, behavior or scholastic" problems she would not be eligible for services. However, from what I've found out from other professionals, she DOES meet the legal requirements. Ironically, I had (completely inadvertently) provided the documentation in writing and orally at the *first meeting* (not "new" information after the fact - the only thing "new" was now *I* know she meets the legal standard) that my daughter was upset about her stuttering, other children teased her about it and she herself was requesting help". According to the opinion of the outside speech therapist I contacted, this meets the legal requirements for services to be provided. However, I believe since this information was provided by her parent, not by her teacher, it was disregarded.
*Point - Listen to the parents. We're there everyday living with our kids. Our documentation we provide is both important to your understanding and has legal ramifications.
LH makes some great points about learning about the IEP process, the law and the district's regulations. From what I know now, absolutely essential!! I personally have begun that learning process. However, remember not all parents are able to self-educate about a fairly complex process. In our school district there is a large immigrant population with English as a second language. I fear for those folks (and others) who cannot help themselves adequately.
Thank you LH for providing the "other side". Hopefully this counterpoint will help the folks inside the system see where things can be improved even in an adversarial, federally-controlled environment!