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Avatar of Robert Rummel-Hudson

by Robert Rummel-Hudson

Speaking for Herself

May 28, 2012 in Featured by Robert Rummel-Hudson

“There is no greater agony than bearing an untold story inside you.” — Maya Angelou

In ways both large and small, Schuyler is learning to advocate for her own self-interests.

A few weeks ago, she attended her first IEP meeting. It’s true that we’ve fallen out of love with Schuyler’s school district, and they’ve been particularly bad this year where her AAC usage has been concerned. I must admit, however, that the thing that I actually like about her school program is that beginning in 7th grade, unless there is a compelling reason against it (and I can imagine that for a lot of kids, there are some very good reasons), students are required to attend their own IEP meetings. Schuyler is in 6th grade; this was her practice run.

I wasn’t sure what to expect, but the meeting went well, at least her part of it. And it went well because Schuyler took ownership over a particular part of her future. Schuyler informed the committee that beginning next year, she wants to use an iPad instead of the dedicated speech device that she’s been using for the last seven years. The team member informed us that the school district wasn’t supporting iPads as AAC devices in the classrooms. We informed them that we didn’t really care. Schuyler made her choice, and we were supporting her, and that was pretty much that.

Furthermore, Schuyler announced that she had chosen to use the relatively new (and vaguely controversial) speech app Speak for Yourself as her mode of communication. She told the committee that she could use her iPad for class in different ways, not just as a speech device, and she pointed out that with the iPad, she looked just like everyone else.

Schuyler made a choice, and it was at least in part a choice based on her desire to “pass” as neurotypical as much as she can. I confess, one of the reasons for her choice, to look like everyone else, made me a little sad. “Passing” feels like a denial of who she really is, and it also feels like an endeavor which may ultimately be doomed to failure. But at Schuyler’s age, and given that her disability is largely invisible, it was a perfectly understandable choice. I am immensely proud of her, not just for making the decision but for expressing her reasons for doing so in an extremely articulate manner. She knows how she wants to communicate. She understands.

This is Schuyler now. She has fallen in love with communication, even as she struggles to find her own way to be heard. She’s writing short stories and reaching out to friends via email and text messaging. She is advocating for herself, and not with anger or a sense of separation from the grand rough world around her, one that she would be perfectly justified in distancing herself from. I watch Schuyler make her way in the world with positivity and courage, and it settles my oft-fretting fatherly heart. There’s a lot I don’t get right in this life, but I feel sometimes like I’ve gotten it right with Schuyler. I sometimes manage to feel like she’s going to be able to make it through the world, communicating on her terms and with real happiness.

Schuyler recently rediscovered her long lost digital camera, and she’s been taking a lot of photos of the world around her. It’s fascinating to watch that world through her lens. It reminds me that for Schuyler, communication is about the words, yes. But it is also about the touch, and the laughter, and the anger, and about what she captures wordlessly with her camera and her art.

Schuyler still has her secrets, and she still has more than most people. But she’s making her own choices about what to keep secret, and from whom, and most of all what to offer to the world around her, if we only have the sense to hear.

———

 

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Avatar of Robert Rummel-Hudson

by Robert Rummel-Hudson

The Anxious Season

May 7, 2012 in Featured, Featured Member by Robert Rummel-Hudson

It’s that time of year again. Schuyler’s IEP meeting is today.

Did you see that? I said that without anxiety, without fear and without slurring my words or developing a nervous tic. I must be getting better at this.

We are generally in a good place for this meeting. The biggest news is that Schuyler herself will be attending the meeting for the first time this year. This is a big deal; it has always been our intention that as soon as she was ready, Schuyler should be present, advocating for her own needs and participating in the decisions being made about her future. I look forward to a day when Schuyler drives the agenda for these meetings.

That day will not be today, however. Today, we’re just hoping she’ll stay focused long enough to make it through the meeting without bribery, Angry Birds or a sedative. But from small beginnings like this, great things grow. I’m excited for her.

Like any special needs parents, we’ve experienced bad IEP meetings in the past. Our current situation is actually pretty golden, particularly compared to ones that took place before we moved to this school district. I can remember one of the very earliest, when Schuyler was just beginning to use an advanced electronic speech device. The technology adviser to the district had been making noise about how Schuyler wasn’t ready for such an advanced model, and that more support from the school wasn’t warranted. We knew better, but our attempts to convince anyone else of the potential for Schuyler fell on unreceptive ears.

A few nights before the IEP meeting, I videotaped Schuyler answering questions on her speech device, including many that required her to move through subdirectories. She had only been playing around with the device for about two weeks. Despite the newness of the device in her curriculum, however, she was able to answer questions using preprogrammed answers. She was able to find and identify colors of specific objects (in this case, rubber ducks). She navigated multiple levels and subdirectories in order to find food menu selections, and she was able to put her choices into very simple sentences. Most of all, she was enthusiastic about using the device. She consistently answered questions with the device that she was perfectly capable of addressing using sign language. And she was just barely getting started. Two weeks had given her this much.

The video was convincing; indeed, it turned around many attitudes among her support team, attitudes that I suspect were built on our reputations as annoying know-it-all parents and because of people like the technology advisor, professionals who were supposed to know better, who were supposed to do better than they did. It would have been easy to feel smug in the face of that meeting, and honestly, I did. For a while, anyway. But the more I thought about it, the more it bothered me. Should it really be the job of a parent to resort to videotaping their own child at home in order to be taken seriously? More importantly to us, should teachers be in the position of limiting a child’s options, basing that decision on budgetary issues?

You might be surprised at my answer, at least to that second question. I recognize the very real fact that for most teachers and administrators, the question quite often boils down to exactly that. What can we afford to do? How much can we afford to help an individual student when each resource that goes into one child is taken away from the rest? It’s a real question, and I recognize that for a small school like the one Schuyler attended, that one child’s needs could very directly affect the services that the rest of his or her class receives. It’s an ugly way to look at it, but it’s a fact and we all know it.

I get a lot of emails and questions about IEPs, particularly from parents who are new to the process and may be attending their first meeting. The one thing that I try to give them is an understanding, or at least my understanding, of how the system works. And I do believe that it works, mostly, and that federal law provides more than adequate protection for the majority of special needs students. I give these parents my opinion, which of course is mine alone and based on purely anecdotal information. I tell them that the key to developing a successful IEP is to recognize a few things going in.

First of all, parents need to understand that everyone in that meeting is there for the same reason: to help our kids. I am convinced that even the people who made our lives the hardest did so out of a sincere belief that what they were doing was in the best interests of Schuyler and her classmates. There aren’t very many outright villains at an IEP meeting, although I imagine there are plenty of parents and teachers and SLPs who would be willing to rebut that point. We’ve all got the same interest at heart.

But having the same interest, my second point begins, does NOT mean that we’re all trying to achieve the same things. The two points sound close, and they are, really. The teachers and support staff want to help their children, they want them all to go into the world with every advantage that the schools can give them. Our goal as parents is to help our child get those same advantages. The key to successfully navigating the IEP meeting, in my opinion, is to recognize that because of their finite resources, the best way for the teachers and administrators to accomplish their goal is to spread their resources out as evenly as possible. Or put more indelicately, I tell these advice-seeking parents, they can do their jobs more successfully by giving your child less.

It sounds harsh until you examine the flip side of that. Your job as a parent, I tell them, is the exact opposite. It sounds callous, as if you are saying you don’t care about other disabled kids as long as your own child gets what they need, and it’s not that simple, not at all. Special needs parents are some of the most sympathetic people on earth, for perhaps obvious reasons. But in that meeting, it is the parent’s role as their child’s advocate to attempt to secure the most resources for their kid, at the necessary expense of other kids.

It sounds crass when stated that way. In a perfect world, the village would take care of them all. But the truth is what it is, and the system works when everyone takes their position with confidence and doesn’t take the other side’s position personally. It’s inflammatory, perhaps, to talk about sides, because what ideally emerges out of this conflict is a plan for that child that balances every party’s needs and responsibilities. It forms from compromise, and it works when parents respect the teachers and the support staff, and when the school believes in the parents and takes seriously their instinctual knowledge of what their child is capable of. It resembles an architectural structure, supported from different angles. When the Individuals with Disabilities Education Act works properly, no parent gets to run roughshod over a school, and no school gets ultimate control over a child’s curriculum.

And in the end, everyone is right back where they started, trying to help the student.

Which is not to say that I didn’t wonder about the feasibility of brining a flask to the meeting today. I mean, if everyone plays nice, I’ll be happy to share.

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Avatar of Lena Herrington

by Lena Herrington

I’m Only Mama

November 22, 2011 in Community Wisdom, Featured Member by Lena Herrington

As his parents, when D was experiencing extreme rage and aggression, we had to make some very difficult choices. He had been in the hospital several times in a 2 month period and nothing was changing. With D’s mental health team, we decided to place him in a Residential Treatment Center (RTC). Since he had always been well behaved in school and did not have an IEP, we chose not to involve them.

At the beginning of this school year, upon his return from RTC, we began the evaluation process for special education. Before the process began, school system representatives were predetermining that he should be in a self-contained classroom for students with emotional disabilities away from his home-based school. I stood, rallying against the forces, for him to be allowed to stay in the regular classroom. I felt it was unfair for us to pull him from his happy place. 

Once the evaluation process was complete, the IEP team agreed that the regular classroom was an appropriate placement. However, he was exhibiting extreme school anxiety and school refusal. We were only successful in getting him to school 1-2 days a week, the other days we had intense battles. Many of the mornings he would hide under his bed or under the seats of the van, crying, begging to stay home, screaming that he just can’t go. The entire situation was traumatic to us (his parents) and his siblings, but mostly it was traumatic for D. I spent hours scouring the internet for ideas to get him to school. When those ideas did not work, I began spending hours investigating online academies and options for homeschooling him. I was essentially biding my time until the evaluation was complete, the team met in order to determine his eligibility for special education, and the IEP was written. I wanted to give the school system a chance to help us meet his needs.

The principal and his teachers had several great ideas. His teachers bought Star Wars books, of his choice, for him to read in the classroom. The principal, in an attempt to make mornings appealing, reserved one of the e-readers and downloaded Star Wars books for him in the library. She also made arrangements with the PE teacher for him to shoot basketball or other physical activity if he chose not to read in the library. She even bought an awesome Darth Vader mask that he could earn by coming to school 15 days.

Unfortunately, even the best incentives can not override intense school anxiety on a long term basis. The absences continued, the anxiety intensified, and the days that we were able to coerce him he was beginning to show anxiety induced inappropriate behaviors. 

It was unnerving when our phone rang at 8pm on a Sunday night. The principal identified herself, apologized for calling so late on a Sunday night, and explained that she was calling to set up a meeting. We, as a team, needed to come back together and brainstorm some ideas to get D to school. We decided to meet later in the week, and my mind went crazy. With previous news from D’s counselor that the school system was trying to find someone to sign a medical homebound release form, my own anxiety was taking over. While I have been considering homeschool, I wanted to do it on my terms, not theirs.

When the IEP team came together, we wrote a beautiful plan for D. We took away some of the choices he had available to him. Choices, like many students with Autism Spectrum Disorders, cause him intense anxiety. We created a time early in the morning for a social story to plan his school day, and a time in the afternoon to decompress and attend to any problems that may have come up during the day. He has an early morning, school routine that should alleviate some of the anxiety that comes from sitting in the hall with other students before class. We agreed to implement a picture schedule. He is an excellent reader, but when his anxiety is high he is unable to focus on the meaning of the words in a written schedule. We also decided to implement a system to help him self monitor his anxiety. Overall, this plan should be perfect, minus one small problem…

A great plan does not create a magical transformation in a student with extreme anxiety.

Our first morning since the IEP meeting we had one of the biggest battles we have had this year. He was embarrassed because of something that happened the previous school morning. We were not successful in getting him to school, we were successful in raising his anxiety level to a point from which he could not return.

Clearly the regular classroom without support was not the proper educational placement for him. He is doing great academically, but at this point, he has not been socially successful. His social failure has intensified his anxiety, making it less likely for him to be socially successful. Hindsight being 20/20, I wish we had chosen to homeschool or use an online academy when he first returned from RTC.

What is the answer? Where is the right educational placement for him?

I’m only his Mama, I don’t know.

What I do know, is that I will continue to advocate for D until we help him reach success — academic and social.

———–

*Note: This post is an update to The Loaded Question: Least Restrictive Environment?

About Lena Herrington

With the help of a wonderful husband, I am raising 4 wonderful kids. D (9) has High Functioning Autism, SPD, & possible mood disorder (though this is being ruled out by his pdoc). He is transitioning home from a residential treatment center where he spent 4.5 months receiving intense therapy. Spike (4) has a speech articulation delay and PTSD from dealing with her brother’s reactive/aggressive behaviors. Pouty (3) has seizure disorder, possible PTSD, and will rule the world with her determination. Samoo (18m) is the cuddliest, sweetest baby with amazing ability to understand language, but severely delayed expressive language. He is quite possibly the most comical, expressive kid I have, even without his words. My M.A.Ed in Special Education may not have taken me back into the classroom, but it sure helps me to “Embrace the Crazy” at home!

Lena’s blog is http://luvmycrzylife.blogspot.com and twitter is @luvmycrzylife" href="http://www.twitter.com/luvmycrzylife" target="_blank">@luvmycrzylife

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by dianaglick

Getting Started in Special Education: First Steps

August 1, 2011 in Ask the Special Ed Lawyer, Featured, Insider Insight, Latest Articles by dianaglick

This first published in May 2010. It was Diana Glick’s 2nd article for us and it’s a terrific reminder right now – before regular session school starts – to start educating ourselves about the basics. If you get a chance read all of Diana’s articles from the start. Especially helpful is the one about what your legal team will need from you; should you ever have the need for one..

On a personal note, about Diana. She contacted me from my personal blog Kidneys and Eyes after I’d posted something about my son’s IEP. It was just a little advice; something to keep him mind. I wrote her back, thanked her and promptly asked her if she’d be willing to contribute to the site and she agreed without hesitation. Why? Why would a busy attorney want to write for a site like ours? Pure desire to educate parents navigating the maze of special education.

Thank you Diana!

————–

By Diana Glick

If you have decided to seek special education services for your child, you have likely traveled a long and often difficult journey already. Your child may have a longstanding medical diagnosis, or you may have been concerned about her performance in school and tried other interventions before getting to this point.

The Individuals with Disabilities Education Act (IDEA) that I discussed in my introductory column has two major categories of services for disabled children: Part B and Part C. Part B will encompass the majority of our discussion of the legal perspective as it applies to school-age children; however, if you are the parent of a very young child with an already diagnosed disability, you should know that services are available to children aged 0-3 under Part C.

Early Intervention

Part C, also referred to as Early Intervention, is available to children with developmental and other disabilities from 0-36 months of age, and includes assessments and services. The services under Part C are provided in accordance with an Individualized Family Service Plan. Part C programs are available in all 50 states, but eligibility criteria vary significantly. If you are interested in seeking out programs for a child under three, the best place to start is at the website for the National Dissemination Center for Children with Disabilities. This website contains information about what is available under Part C and provides Early Intervention contact information for each state.

After Early Intervention

Part B of the IDEA encompasses special education services for children ages 3 through 21, which are administered by local school districts. If you suspect that your child needs special education services, the first step is to request an assessment. It is best to make this request of the school principal and to do so in writing. Each state has different timelines for assessment. For example, in California, once the school receives a request for assessment, they have 15 days to provide parents with a written assessment plan. This is not the case in Ohio, where the school has up to 30 days to respond to a request for assessment. Federal law provides that the District must obtain your written consent to proceed with testing, which is typically done with an “assessment plan.” Once you have signed and returned the assessment plan, the District has 60 calendar days to conduct the assessments and convene and IEP meeting to discuss their findings, unless state law provides a different timeline.

Getting a response

What should you do if you make a written request and get no response? As an attorney, I often hear stories of difficult communication with schools and school district personnel. The last thing you want to do is get off on a bad foot with people who are there to help your child. On the other hand, it is frustrating to be ignored. If you are not getting a response from your child’s teachers or the school principal, the next step is to contact the school district’s special education director. This person is sometimes housed in the Student Services or the Special Services department. It is also important to conduct communication in writing and to start a binder with your child’s special education documentation. A well-organized binder helps you track your child’s course through special education and safeguard important documents. If you are having difficulty getting a response from the District to requests for an assessment, I recommend keeping a copy of all of your communications and having a school secretary or administrative assistant initial and date your copy to confirm the date of receipt.

In my next column, I will discuss the various eligibility categories and what parents can do when there is a disagreement about eligibility among the members of the IEP team. In future columns, I will also discuss alternatives to an IEP, such as 504 plans.

We are also interested in hearing from you! Feel free to suggest topics for further discussion; just keep in mind that I cannot provide legal advice for your specific situation.

Disclaimer:
This column reflects the views of Diana B. Glick in her individual capacity. It does not necessarily represent the views of her law firm or her clients, and is not sponsored or endorsed by them. The purpose of this column is to assist in dissemination of information about federal special education law, but no representation is made about the accuracy of the information. The information contained in this column is provided only as general information for education purposes, and topics may or may not be updated subsequent to their initial posting.
By using this column you understand that this information is not provided in the course of an attorney-client relationship and is not intended to constitute legal advice. This blog site should not be used as a substitute for competent legal advice from a licensed attorney in your state. This column is not intended to be advertising and Diana B. Glick does not seek to represent anyone desiring representation based upon viewing this blog site in a state where this blog site fails to comply with all laws and ethical rules of that state.

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Avatar of Julia Roberts

by Julia Roberts

Adjustments in Special Needs

February 23, 2011 in Featured, From Julia by Julia Roberts

We’ve recently been trying to figure out what we’ll do with our son for 6th grade. Well, that’s not exactly true, we’ve been thinking about it for about a year. Sixth grade is still month away but with private schools needing to know by April 1ish we needed to start looking in January.

We have a good option for our public school. It’s large though. The director of special ed is a lovely woman who came to our elementary school to meet with us and discuss our son’s IEP/needs. She didn’t see any reason why they couldn’t serve him there. We also visited a private school (to the tune of $22,500/year) that is for students with learning differences. My son had a lot of anxiety over our discussions and it manifested itself in self hatred talk and thoughts of harming himself. It was with 100% certainty that I knew the root of the anxiety.

Anxiety is a tricky thing in our world. With delays, mental health issues and the fine balance of keeping things from exploding at any given time I thought it’d be good for get him over to the middle school to see what it was like. He was  resistant to going to a private school away from kids he’d know but after visiting the large school he’s open to another school choice. When we left the building he said, “No, it’s too confusing.” When I told him one of the schools we are looking at has just 8 kids in the 6th grade he smiled and said, “Yeah, I’d like a small class like that.”

He obviously needed to see it to adjust his thinking he had to go to the school where most of his friends will go. I still think he could but I’m not sure he’d flourish. He’d survive it but not without unique challenges of being different in a school of 400+ 6th graders. We’re still searching and I’m sure we’ll come up with something because we just will.

We’re a resourceful bunch, special needs parents are, aren’t we?

We have a world of adjustments we make from the second we hear of an issue/diagnosis to selecting where we’ll live to making decisions of what to push for and let go of with educators, friends and family. We’re constantly making adjustments. I know when you have kids you know you’ll have adjustments. Add in the special needs factor and it just makes things more complicated.

I am not sure when I realized my life would be about making adjustments about everything…including a style of parenting that isn’t necessarily 2nd nature, maybe a year into learning about the kids recessive polycystic kidney disease. When things are stable and moving along I forget the amount of adjustments we have to make nearly everyday. Adjustments have become so much a part of what I do, it hits me when we have a big adjustment.

Like middle school. Middle School + Special Needs = ADJUSTMENT. In a big way. I’m not ready for it but with special needs we don’t really have time to get ready, do we?

What’s your latest adjustment relating to special needs?

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by dianaglick

Wading Through the Alphabet Soup: An Introduction to Federal Special Education Law

December 11, 2010 in Ask the Special Ed Lawyer by dianaglick

One of the first things I explain to clients during an initial intake appointment is the basic federal standard for educating students with disabilities. This is frequently referred to as the “alphabet soup” of special education: the IDEA mandates that schools provide FAPE in the LRE according to the child’s IEP. Keeping in mind that talking in acronyms is just job security for attorneys, let’s break it down:

IDEA = Individuals with Disabilities Education Act

This is the federal law ensuring that special education services are provided to children with one or more qualifying disabilities, whose disability interferes with their ability to receive an education. The IDEA originated in 1975 under President Ford and has been reauthorized and changed several times, most recently in 2004. While the IDEA is federal law and applies to all public school children in the country, each state also has its own education laws that may be slightly different than the federal requirements; states may provide more protections than those available under federal law, but may not provide fewer or less than the federal standard.

FAPE = Free Appropriate Public Education

The IDEA defines a free appropriate public education as special education and related services that are provided at no cost to parents and are in accordance with the child’s Individualized Education Plan (IEP), among other requirements. 20 U.S.C. 1401(9) (2009). The majority of legal disputes are about the meaning of “appropriate” for a child’s particular circumstances. In 1982, the Supreme Court issued a decision in Board of Education v. Rowley, which provides a working definition of FAPE as “a basic floor of opportunity” providing “some educational benefit.” Bd. of Education v. Rowley, 458 U.S. 176, 200 (1982).

What does “a basic floor of opportunity” mean in real terms? Because children who are eligible for special education have such a wide range of disabilities and needs, it cannot be defined as a specific set of services. However, most children who have passing grades or are making progress towards their IEP goals will be found to have received a basic floor of opportunity.

LRE = Least Restrictive Environment

This is one of the major improvements that the IDEA has made for students with disabilities. No longer does the law allow disabled children to be warehoused or educated exclusively in a special education setting, as long as their IEPs indicate some mainstream time during the school day. The LRE requirement has led to better outcomes, both academically and socially, for disabled students. It can also be a double-edged sword in some instances when parents are seeking a more restrictive environment for their child.

IEP = Individualized Education Plan

All students who are eligible for special education are to receive services in accordance with an IEP, which must be developed to meet the child’s individual needs. Those of you who already have some experience with special education have probably spent many hours at IEP meetings and have a sense of what they entail. We will talk more about IEPs in future columns.

I am excited to be included in this new community of families supporting children with special needs and look forward to sharing more of the legal perspective with you all. In future columns, I will address such topics as the difference between IEPs and 504 plans, discipline issues, assessments, the fair hearing process, private placements and knowing when to seek out legal help, among others.

We are also interested in hearing from you! Feel free to suggest topics for further discussion; just keep in mind that I cannot provide legal advice for your specific situation.

Author Diana B. Glick

Disclaimer:

This column reflects the views of Diana B. Glick in her individual capacity. It does not necessarily represent the views of her law firm or her clients, and is not sponsored or endorsed by them. The purpose of this column is to assist in dissemination of information about federal special education law, but no representation is made about the accuracy of the information. The information contained in this column is provided only as general information for education purposes, and topics may or may not be updated subsequent to their initial posting.

By using this column you understand that this information is not provided in the course of an attorney-client relationship and is not intended to constitute legal advice. This blog site should not be used as a substitute for competent legal advice from a licensed attorney in your state. This column is not intended to be advertising and Diana B. Glick does not seek to represent anyone desiring representation based upon viewing this blog site in a state where this blog site fails to comply with all laws and ethical rules of that state.

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by dianaglick

Assessments In the Driver’s Seat

November 3, 2010 in Ask the Special Ed Lawyer, Insider Insight by dianaglick

The most important thing to remember about assessments is that they not only determine eligibility — they also drive placement and services.

A good and appropriate initial assessment can be used by the IEP team to determine whether a child is eligible for special education. My prior articles have described the requirements for eligibility, in short: a qualifying disability and a showing that the disability interferes with a student’s ability to access his or her education. However, that initial assessment will also set the stage for the placement and services offered by the district. While the eligibility category (such as autism, specific learning disability, or a speech/language impairment) will signal the main interventions to be provided, an IEP should include services necessary to address all of your child’s areas of need.

For example, if a child is eligible for special education as a student with Other Health Impairment because of a diagnosis of ADHD, he should receive services designed specifically to address the challenges arising from attention deficit. However, it is possible that in the scope of the assessment, the evaluator also identifies some problems with social/emotional functioning, such as withdrawal, anxiety or depression. These issues should be addressed as well, usually by an initial offer of school-based counseling, or a social skills groups for students.

When Assessments Steer You Wrong

Clearly, when an assessment is used to conclude that a child is not eligible for special education or not eligible under a certain category that you may be seeking, this can be a frustrating setback in your advocacy efforts. However, the worst assessments are the ones that provide absolutely no useful information about a child. Even if you disagree with a particular recommendation or conclusion that the district may have drawn from an assessment, the data itself can still be very helpful in understanding your child’s educational strengths and deficits.

Some of the more common issues that that arise with assessments are when the district fails to use an appropriate testing instrument, fails to properly score a test, or fails to administer or conduct any testing in an area that is a known issue with the child. To expand upon the example above with the child who suffers from ADHD, if that child’s teachers have noted troubling behaviors in the classroom that they believe could be emotionally-based, or if his parents are raising concerns about his mental health status, this would be considered an additional area of suspected disability. When his triennial re-evaluation rolls around, the district should absolutely include some kind of assessment to address these concerns.

Federal law sets forth several requirements for evaluations, including that they be conducted at least every three years, but not more than once per year unless agreed upon by the IEP team. A full assessment should include a variety of testing instruments and tools, so as not to rely on a single measurement of a child’s ability. In addition, standardized tests should be administered in accordance with the publisher’s instructions by knowledgeable and qualified personnel, should be given in the language of the student and should not be racially or culturally discriminatory. One key requirement is that the child must be assessed in all areas of suspected disability.

Getting Back on Track

A major part of my practice involves helping parents navigate a situation in which their child has not been appropriately assessed. The law allows parents to obtain an independent educational evaluation (IEE) at public expense when they disagree with a district assessment. A key point to note: there generally must be an assessment with which to disagree. While there are exceptions to every rule, if the district simply fails to assess and you take them to court, they will likely be given an opportunity to conduct an evaluation before having to pay for a private one.

If you request an independent educational evaluation, federal regulations provide the district with two choices: they can either agree to your request or they can file for due process to establish that their assessment was appropriate. In most cases, the district will determine that it is more cost-effective to pay for an independent assessment than to incur the expense of a due process hearing against the parents. However, it is important to know that the district may file for due process in response to a request for an IEE.

Many times, a district will deny the parents the requested IEE, but fail to bring due process. In this situation, parents often seek out a private assessment themselves and then request that the district reimburse them. They may have to file for due process against the district in order to obtain this reimbursement.

If the district agrees to fund an IEE, parents should be given the opportunity to negotiate with them regarding the independent professional who will conduct the evaluation. It is important to go with an assessor who is truly independent of both the parents and the district so that all sides feel they are getting an objective opinion. Ask other parents in your community for references in order to identify the good assessors in your area.

Once an independent assessment has been conducted, the district should convene an IEP meeting to consider the results of that assessment. If the independent assessor draws different conclusions than the district, this may strengthen the parents’ argument for a particular category of eligibility, a particular placement or additional or different services. Parents may use the independent assessment in a due process hearing against the district to establish that the district’s assessment was inappropriate or that the child has been denied services because of the district’s failure to identify his or her needs.

While trying to obtain an appropriate assessment of your child can be a frustrating experience, the law has built in a mechanism for a second opinion, which in most cases I recommend pursuing. Having more information about the student’s strengths and deficits leads to better team decision-making, better educational planning and better outcomes for the child.

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by dianaglick

What Your Future Attorney Will Want to See

September 9, 2010 in Ask the Special Ed Lawyer, Insider Insight by dianaglick

Mom and SonThis is a rather cynical title. But, in case you ever need to seek the advice of an attorney or bring litigation against the school district over your child’s special education program, there are certain documents that you will want to be able to locate and present to an attorney. On a less cynical note, it’s always good to have an organized binder with your child’s important documentation. There are professional organizers who comment on this blog about organizing your life when you have a child with special needs and nothing in this column should be construed as going against their advice. This is more of an attempt to piggy-back on the concept of organization from a legal perspective.

Some of my clients have saved every scrap of paper related to their child, but somewhere along the way became completely overwhelmed with trying to keep it all sorted. I can sympathize with this—you start by throwing a few IEPs in a folder, they multiply when you’re not looking, and suddenly you have paper coming out your ears and no sense of how to organize it.

What to Save

My recommendation is to save the following for the duration of your child’s K-12 education:

* Official report cards and progress reports (computer printouts from online grade programs can also be helpful if you regularly consult these services for updates on your child)
* Assessment Plans
* IEPs
* Assessments
* Written communication with the school or school district (including emails)

Other items of that may or may not be important, depending on the case:

* Notices of Meeting—only if the District is continually canceling meetings on you, or has a habit of convening meetings with very little notice. If you have regular, timely meetings, a notice of meeting itself is not going to be important.
* Procedural Safeguards—Districts are required by law to provide you a copy of these and some people have enough for several bird cages. I do advise parents to read these and ask questions about anything that is unclear. However, as long as you have a recent copy from the District, there is no need to continue accumulating them. Sometimes, you can even save a tree and decline them at the IEP meeting. Just remember that you will be held to knowing and understanding your rights whether you accept or decline a copy.
* Mental Health records—including progress notes from treatment, any Discharge Summaries if your child has experienced a psychiatric hospitalization, and statements, receipts and cancelled checks for your out-of-pocket expenses.
* Record of any outside services—if you seek out private tutoring or educational services for your child, keep a record of the services received, including any pre-tests or progress summaries, as well as statements, receipts and cancelled checks.

How to Save It

A simple three-ring binder with tabs separating out the school years is great way to keep your documents organized. Within the section for each school year, you can group the documents as I’ve outlined above (assessments, IEPs, report cards, etc.). Another alternative is to have a separate binder for each group of documents and then organize them according to date within each binder. Either one of these solutions will work well over the long term and will allow you easy access to documents as you need them.

What to Bring to an Intake Meeting

Special education lawsuits have a two-year statute of limitations, unless your state law specifies a different time period. State statutes of limitations prevail over the federal two-year statute and there are states with longer and shorter timeframes. California’s statute of limitations is two years, so in most cases, our office wants to see all the documentation described above from the last three school years—documents from the period covered by the statute of limitations, plus one year before that. This allows us to see what services were in place when the statute of limitations began and will usually allow us to see a triennial assessment and review.

If your attorney suspects that you have a case for pleading additional school years outside of the statute of limitations, he or she can ask for additional documentation from you and from the school district.

Disclaimer:

This column reflects the views of Diana B. Glick in her individual capacity. It does not necessarily represent the views of her law firm or her clients, and is not sponsored or endorsed by them. The purpose of this column is to assist in dissemination of information about federal special education law, but no representation is made about the accuracy of the information. The information contained in this column is provided only as general information for education purposes, and topics may or may not be updated subsequent to their initial posting.

By using this column you understand that this information is not provided in the course of an attorney-client relationship and is not intended to constitute legal advice. This blog site should not be used as a substitute for competent legal advice from a licensed attorney in your state. This column is not intended to be advertising and Diana B. Glick does not seek to represent anyone desiring representation based upon viewing this blog site in a state where this blog site fails to comply with all laws and ethical rules of that state.

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by Julia Roberts

Aspie Advocate: Helping parents and kids win the IEP game

August 27, 2010 in Insider Insight, Resources by Julia Roberts

Meet Carol Greenburg, Executive Director of Brooklyn Special Needs Consulting, and recently appointed East Coast Regional Director of Autism Women’s Network. I had the pleasure of meeting Carol at BlogHer (well, formally meeting her at a book reading for My Baby Rides the Short Bus, where I had this picture taken) and from the moment I saw her speak at the Autism session at BlogHer I liked her. She has a wicked sense of humor and her delivery and pause at just the right moment is a gift. She wicked smart, too. We’re proud and grateful she allowed us to interview her for Support for Special Needs.

Julia

Can you tell us a little about yourself and your family?

We have three humans and two cats in our house. (Which species outranks which should be obvious to those in a similar position.) My husband, John, is a marketing and publicity genius, owner of Soho Digital Art Gallery, the only gallery in NY dedicated to the display of digital art. He’s also an all-around great guy without whom I can’t imagine doing any of the work I do. I’m a professional juggler, uh, I mean mother, and constant irritating barrier between my eight-year-old and his ever more creative mischief-making. The hardest part of my job, other than housework, is keeping a straight face in the aftermath of his antics. Like my son I’m on the autism spectrum, which legally qualifies us as people with disabilities, but I prefer to think of us as a traveling consciousness-raising team using our autistic superpowers to defeat ignorance and serve justice. Makes trips to the supermarket more interesting. My little boy struggles with a a severe speech delay, and other autism-related difficulties, which he gracefully balances with song, dance, sports and most importantly laughter.

Can you talk a little bit about what you do? An anecdote to illustrate would be great.

As Executive Director of Brooklyn Special Needs Consulting, an advocacy and consulting company that serves Brooklyn and beyond. I walk families through the IEP process, helping them prepare for meetings and attending meetings with them. I consult with institutions about effective programs for special needs students and offer workshops to parents and professionals. As an advocate specifically, I try to help alleviate parent confusion, empower them as full members of IEP teams, and help school personnel to do the jobs they were hired to, but don’t always have the budget or staff-power do. Calm and imagination are an important part of my job, as many discussions about who gets what services can quickly escalate into fights. Fights rarely serve anyone. (Plus they make my ears hurt. Believe me auditory sensory issues can really ruin an otherwise perfectly good day.)

The best way to tone it all down is to acknowledge the wisdom, even if it’s only the most microscopic shred of wisdom, of the people who disagree with you. So when a bunch of teachers tried to force one of my clients, a fourteen-year-old interested in writing, to take what amounted to a study hall rather than the advanced English class he wanted, I picked one word out of the conversation that came up frequently. Self-advocacy. The teachers and administration kept saying this word reverentially and bundling it up in a way I still don’t understand with this kid sitting in a resource room with very little of the structure he needed and could get out of the English class he himself requested. “I couldn’t agree more about the importance of self-advocacy” I began, because that’s what I believe. “The folks from the school seemed pleased as punch. “And at the heart of self-advocacy is a student’s right to choose his own electives,” I continued because I believe that too. Now, my autism interferes with my ability to read facial expressions and body language, but even I know what drooping shoulders and frowns mean. In the end it worked out for everybody, though. I hear my client is thriving in his class, and the teachers are genuinely happy for him.

What was the inspiration for starting this business?

One of my closest friends was diagnosed with cancer a week or so after finding out her son was on the autism spectrum. Since my son got his diagnosis a year earlier and I had a little experience with the special education system We figured that if she could stand aggressive cancer treatment, I could handle a little aggressive advocacy on behalf her child. About three months into the process, I found myself getting him services that no one else had been able to get. That’s when, with my husband’s encouragement, I decided to attend some workshops and eventually turn pro.

Why do you think families have trouble doing this on their own?

A lot of parents are not fully aware of their rights, so they don’t have the proper information upon which to act. But even the best informed parents often need someone else to step in and offer some objectivity. I occasionally lobby for a service or two for my son, and of course I participate in his IEP meetings. But because he has a unilateral placement in a private school, we need to sue every year to get reimbursement for his tuition. We’re lucky to have a terrific lawyer. Now I don’t have a law degree myself, but even if I did, I wouldn’t represent my own family. Just as lawyers shouldn’t represent themselves at trial, I feel that advocates shouldn’t represent their own families at Due Process, unless there are no other options. And while it’s true that, when everyone is behaving cordially, parents really are the best advocates for their own children because no one knows those children better. When conflicts arise sometimes they need someone who isn’t as close to the situation to help them strategize and steer clear of unnecessary escalation. Due process is expensive, time and energy consuming, and inherently adversarial. Sometimes, unfortunately, it’s unavoidable and when it is I’m always happy to recommend lawyers I trust to represent families. But my preference is to try and keep everything in the conference room so that everybody stays out of the hearing room. That works out better for families and taxpayers and yes even for lawyers. No decent special ed lawyer wants to lose a case and set a precedent that might hurt children in the future.

What one piece of advice would you give any parent who has concerns about their child’s IEP?

It depends what the specific concern is. If the IEP lacks clear goals, you’ll need one strategy, but if the IEP is picture perfect, but not being enforced then you’ll need another. Overall, if you feel like your input isn’t heard or valued, you’re probably correct. A very casual disrespect of parent’s expertise in their own children is extremely common. It’s also legally and morally wrong. I recommend all parents set the tone write parent attachments that paints a paragraph-long picture of your child (motivators, special interests, observations of behaviors at home) and provides a list of his or her most urgent needs, ask to read them right after everyone introduces themselves at the IEP meeting.

If you’d like feel free to give us a link to a blog post you think would be helpful for people starting or in the IEP system and finding it challenging. And please provide us a link to the business site (didn’t know if you want someone to come onto the site in a particular area)

I don’t want to overwhelm anyone with information so I’m just going to give you two URLs that I heartily recommend . I worship at the altar of wrightslaw.com. They have a website with a search engine, and a terrific blog. I’m also a member of Council of Parents Attorneys and Advocates, which does require a modest fee to join, but I think it’s well worth the price. If you don’t find what you’re looking for there, you can always contact me at my website www.bklynsnc.com or just come visit to find out more about my work.

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by Julia Roberts

Supercat Calhoun: Supermom Advocate

August 26, 2010 in Inspiration by Julia Roberts

Meet Catherine Calhoun (she’s on the left, community member Janis @sneakpeekatme in the middle and me at BlogHer). She’ll first tell you she’s a mother and advocate for son Billy. She’s also a lawyer. An advocate for rare disease. An event planner as long as it benefits research. I had the (extreme) pleasure of meeting her at BlogHer and I’m proud to call her my friend. She doesn’t like to hear about any child in pain, not from medical issues or emotional issues and she’s as compassionate about other kids as she is her own.

I consider meeting her a highlight of attending BlogHer this year and I’m lucky I know her. Follow her around the Internets because you’ll get to witness great things. And if you are lucky enough to meet her in person, buy her a cup of coffee. She loves her caffeine. You’ll see why.

So, tell me about you and your family and why you find yourself being able to identify with the special needs community:

How do I identify with the special needs community? That’s a funny question, because I think back to over eight years ago when a friend of mine was collecting donations for Canine Companions for Independence (CCI), a group that places working dogs with people living with various disabilities. I’m pretty sure I didn’t even listen to her pitch and just wrote her check without really even thinking about. I knew nothing about disability. Mind you, there is plenty of crazy in my family, but never any “gosh, I hope this place has an accessible bathroom” type disability.

When I was pregnant with my younger child, a son named Billy (now eight), that is when I got my first taste of “what do you mean my kid is not gonna be perfect?” We had one strange sonogram and jumped into a bunch of possibilities, read the special medical needs section of the baby guides, and then more sonograms. None of the medical experts were worried when the issue resolved close to the end of pregnancy, but I never shook that worry, the worry that puts a tightness on your throat and heart, I just moved it into a “save for later” box in the back of my mind.

I went in for a sonogram two days before my due date just to see if Billy would be a big baby like his older sister was or not, she was a c-section, and we were thinking that Billy would be too, if he was really big. He wasn’t big and ended up an emergency c-section when the sonogram tech caught that conditions were bad and going for worse that day. I don’t know that he would have survived the weekend if I hadn’t pushed for that sonogram that Friday morning. He was skinny but alright despite the emergency situation.

At about two weeks old, I noticed that he had these birthmarks on his back, big ones. I looked them up in the “What to Expect” and winced when it said something like “talk to your child’s pediatrician if your child has café-au-lait birthmarks because they could be a sign of a serious medical condition.” Gulp. I immediately googled the birthmarks and found the possibility of neurofibromatosis (NF), pretty scary stuff. I was pretty much convinced at that point that he had NF. His pediatrician blew me off, for several years. I pushed to rule things out for the NF diagnostic checklist as much as possible – it’s a wait and see medical condition and can take years for diagnosis.

I freaked out when Billy was delayed for speech at two years old and my speech therapist sister said: “I think he has apraxia.” What do you mean we will be coming to this speech therapy place two or more times a week for years plural. Gosh, if only I had known then. We added occupational therapy when Billy was three to fine tune the fine motor skills. He seemed less coordinated than the other boys. He was not at all a dare devil – no bouncy houses, no climbing to the top of the play sets.

At age four, he played hard one day and was limping the next. We went in for x-rays, oh boy. One doctor then the next and then the next, we got to fibrous dysplasia for the bones (McCune-Albright for the overall deal). They x-rayed for over an hour, and I cried the whole time, just cried and cried.

It’s been almost exactly four years since that limping day. Fibrous dysplasia means progressive bone disease, more and more irreparable damage to the bones day after day, with most of the diseased bone apparent by age 15. For Billy, it also means pain, lots of pain and a walker and wheelchair. I’d say we are pretty firmly planted in the special needs community as we proudly tout our ten pound IEP and go about town with Picasso, a working dog that Billy got from CCI in May 2009.

Supercat Calhoun and her son, Billy

What was your first experience in advocating for your son?

I would say that the most memorable (and likely first effective) experience in which I advocated for Billy must have been when we met our second bone specialist, Dr. A., on the Wednesday following the Monday we first learned that Billy was facing some bone trouble. I had about had it by that point. I had been through the pediatrician, the one who never listened to my worry, and then the first bone specialist whose resident was near tears talking over Billy’s case. I was standing in a tiny, hot, bright yellow exam room with a Daffy Duck print on the wall, Dr. A. was talking over Billy’s case to the four or more residents jammed in the room with my husband, Billy and me, it was almost lunch time, and we’d been on the road and waiting for hours already. I said, clearing my throat and nearly barking I’d imagine, not wanting to cry, and quite loudly I believe: “Someone has to take responsibility here. I’ve been worried about this kid for four years and no one listened. Someone has to do something here. It’s time, do something for my kid, help my kid.” And our kind Dr. A. replied, without calling security on me: “We will try. We will help William.” And that was when I decided he was our guy for sure and dropped the first specialist right then saying: “Can you let Dr. __ know we are using you? We want to use you.” As the residents jaws dropped because this Dr. A. was not even five years out cutting and the other was quite revered. (Now Dr. A. and I laugh about this.)

Rare disease advocacy? Of course, I joined every group, foundation, list serve and the like possible for fibrous dysplasia within the first week of official diagnosis. Within a few months, I knew who the experts were and had read every medical journal article I could find, even the ones that cost $45 and end up being a one-page letter to the journal editor, ugh. One of the foundations, the Fibrous Dysplasia Foundation, posted a notice about six months after the diagnosis that they were looking for board members. I thought to myself that “sure, I can do this, I’m a lawyer, semi-retired, busy caring for Billy, but still.” I was voted on and got to work with that.

Then I applied for a disability advocacy program in Louisiana called Partners in Policymaking, got accepted and learned more though that program than I would have ever imagined. A friend of mine wanted to raise some money so we then decided to raise money for the MAGIC Foundation (in large part because their newsletter, the first one I ever read, was critical to getting Billy the care he needed). Often kids with Billy’s medical issues are harmed by the medical system – doctors don’t know what to do and end up causing more harm than just the fibrous dysplasia or endocrine issues would have on their own. The fundraiser was a success raising more than $20,000 for MAGIC. MAGIC then asked me to take on the volunteer coordinator position for Billy’s specific condition, one guess, of course I said “yes”.

I think I probably take on more and more because the work is so important to me – I know I am helping people who need help more than pretty much anyone else in the world, kids with complicated rare conditions are very vulnerable. And it also keeps me from thinking (so much) about how Billy’s bones are getting worse all the time. Tell us about all the organizations you are involved in and what you’ve been able to accomplish (it’s okay to toot your own horn): In addition to the Fibrous Dysplasia Foundation and MAGIC Foundation, I’ve been busy volunteering with the Children’s Rare Disease Network (CRDN). I’ve been helping with the RARE Blog and social media tools like Facebook and Medpedia. I am most proud of the Father’s Day project we did in June with almost 80 dads participating and sending in the most precious photos I’ve ever seen, it was really exciting to me to celebrate these dads because I personally appreciate how hard my husband works to provide for us.

We do have some good family support from my husband’s parents, but since both of my parents died when I was young that leaves coordinating Billy’s medical care pretty much all to me (I often wish for a mom myself to shoulder the needs). It’s complicated and never easy. I am really excited to be part of the team leading the charge for the Global Genes Project (GGP) this September. GGP is working to raise awareness for rare diseases, disorders and conditions using blue jeans/denim as symbol for support. GGP has an idea in the running with the Pepsi Refresh Project that could revolutionize the way research is funded for rare conditions making it easier for rare groups and foundations to connect with folks looking to support a worthwhile cause. The campaign we are pushing to make a win happen is called “Vote 4 Hope”, please stop by the website www.vote4hope.org to grab a button and show your support. We will need everyone’s help to get the word out and get the votes we need by text, through Facebook and on the Pepsi Refresh website. {can we add these if we have live links/info before publish date on this article?}

How can we help you? Please provide links and tell us what to do!

I need lots of help with Vote 4 Hope – please, everyone reading this, pledge to vote by text, or Facebook, or Pepsi Refresh, or all three. Please ask your family, friends and even strangers to do the same!

What do you find most rewarding about the volunteer/advocacy work you do?

First, I sleep better at night knowing that kids all over the world, and grownups too, are doing okay or just doing better because I helped them. I know what it’s like to be scared and need help, to need information, and when you have what you need, it is a gift.

Second, I always wanted to be a designer. I love beautiful smart things, and even wrote a paper on Frog Design when I was freshman at the University of Dallas. When I get to help craft campaigns like “7,000 Bracelets for Hope” which combine the things I love – handmade thoughtfully designed Etsy-like things – with a cause I am passionate about – rare kids, that is really as good as it gets. {I don’t really have much talent is why the designer thing didn’t work out I guess.}

Any words of wisdom to parents who are just getting into finding their own advocate voice?

It still seems strange to me, and a little sad honestly, that it took my son having a sometimes super terrible health condition to bring out the mama grizzly in me. But it is what it is, and now, I feel like I can do almost anything. I’d say don’t let doctors and researchers, don’t let anyone, intimidate you. Find the people you can work with – the people you can have fun with while making the world a better place. I live in this tiny rural town in Louisiana, and I just started a research fund with one of the smartest researchers around, who knows what will happen – maybe he will find something that really takes the pain away for Billy. I hope so. And every time I just think about it, it lifts me up and loosens the tightness of worry (and feelings of failure and guilt). Really, anything must be possible if I can make this happen from Louisiana. I find a lesson in the trials of my life and a ghost of a gift. I believe Taisen Deshimaru’s words: “To receive everything, one must open one’s hands and give.” That’s what I try to do, and it’s the legacy I want for my kids, especially since there won’t be any money, special needs/disability is very expensive, mentally and dollar for dollar.

Vote4Hope is live!

We encourage you to follow Catherine at her blogs: http://www.calhounbonepainproject.org/ and http://www.supercatcalhoun.com/ or on twitter: @supercatcalhoun

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