Who watches the watchmen?

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On February 24 of this year, the South Indianapolis Star ran a story on RISE Learning Center. In it, Anne Davis, who is the director of Indiana's Division of Exceptional Learners, was quoted. 

All parents want the very best they can have for their children. I believe that schools are doing the best they can to provide the best services for their students, but sometimes those two pictures don't match. Everyone comes to the table with the best expectations, but their perspectives change.

This is the woman who defines the state of Indiana's special education. She thinks it's okay, and schools are doing all they can;  except that it's not, and they aren't as a whole. Rise Special Services, soon to be South Side Special Services of Marion County, is chief among the offenders.

Parents can present evidence for how this happens, and have. Procedure gets a little devil-may-care. Parents don't know what's happening and when. Recommendations go unmade and testing undone. Then, the IEP stands with minimal services "offered"to that child. Anne Davis has a responsibility to see that IEPs like this are never written in the state of Indiana. That is best done through the training of administration on those same procedures and making it policy to get testing done as a matter of course.

This year, testing policy was loosened to allow schools to skip it, if it's not needed. It's often unneeded by a school's estimation. This was done, as so often is the case, because of a shortage, schools claim.  Testing puts documentation in the hands of parents and leads directly to program and service decisions. 

This year, Anne Davis also granted RISE Special Services' request for reconsideration of the findings in a complaint found for the family of the student allowing them to skip training for all administrators in Perry Township of Marion County and only train two administrators at the Learning Center.

Special education can be costly, but avoiding the expense now only leads to more expense and loss later, even if you ignore the loss of quality of life for students. We can continue to ignore parents, pretend they are being over-emotional basket-cases, or we can fix the problem, plan for the future and try to serve each individual.

Analyzing an IEP. . . for dummies.

Image by bestlibrarian via FlickrCase conferences. Much like the flu bug, they come every year like clockwork, and they can be about as much fun. Here is a quick list of things to watch for as you go over your draft.

• Make sure your draft of the IEP arrived a minimum of 24 hours in advance of your CCC.
• Note each person invited to prepare for possible requests to be excused (never the teacher or the agency rep).
• Double check that your previous concerns have been noted.
• Are the goals and objectives satisfactory, appropriate and thorough?
• Pay close attention to methods of measurement, descriptive documentation, testing, teacher reports. One method isn't enough.
• Services should be expressed as they will be delivered, ex. speech should be a weekly amount, not monthly.
• Written notes should contain all relevant information that fits nowhere else such as previous meeting notes, parent/school contact and special requests being discussed.

This list is, of course, not exhaustive. Give yourself plenty of time to go over the draft, as this is a legal contract with all that implies.

A personal note: our struggle with Perry Township.

Image via WikipediaOur family is in the complaint process, I think our situation is probably extreme. It all began four years ago when a fellow RISE Parent brought me in to their group. We became aware of glaring omissions and violations.

Being a mom and a reformer at heart, I got training from a group called Insource and anywhere else I could get it, and I started working to improve our school's services and IEP.  Four years later, here we are. Still fighting to reform an even more broken system.

And I am tired. I'm tired because my son matters. It's a truth. Every child in RISE Learning Center matters. They deserve protection and service, true humanitarian service, and each of us should carry the burden of these kids' challenges and obstacles in our hearts, but there are a few who just. . . well, they don't. It's not a mission. It's a job.

If you have the mission. . . 
Your thoughts are preoccupied with how to do better each day for these sweet souls. You set your ideals far beyond the demands of your pocketbook or your ambition. You want for them what you want for yourself.

We want opportunity. All kinds of opportunities are denied those housed in this building each day. Some are denied the opportunity to communicate. They have no system by which to speak their wants and wishes, nor are they being given one. Some are denied the opportunity to learn by being placed in programs inappropriate to their needs. Some have been denied peace because no one stopped the bullying and beatings. The mission is lost at RISE, and it's not coming back very quickly.

Parents have gone to the DOE, the superintendent, Dr. Little, even the boards. Nothing changes. Okay, maybe it gets worse, but that's not change worth having. Families withdraw their children from this system and go it alone when no remedies emerge.

Ours may be next. How long can we wait, let Darrel wait, for adults to get the mission? How much farther behind can these kids fall before we act to stop systemic corruption and ineptitude? How much more can parents be expected to do? If we have to sue the school, which most can't, it will wipe us out with no likelihood of recouping anything without wheelbarrows of proof that we aren't lying or overreacting or reaching or exercising a vendetta or all the other things administrators say to steal our credibility or divert attention from facts.

Efforts to discredit the parents of RISE have never stopped and likely never will, but one thing is certain we aren't backing down. We have the mission. Each one us got it handed to us in a hospital both on the day of our child's birth and the day of their diagnosis. The mission to serve our children as advocate, parent, interpreter and care giver is a reality of every single day.

To parents facing the unfairness and discrimination of education systems gone awry, I say, " Never give up. Never surrender. Your children matter." Guess I just need the reminder.

Getting a program

Image via WikipediaA program is the key. When folks start out on the road to a special education, it's important to know what you can expect. Good programs should contain three things: data, flexibility and room to grow.

But the greatest of these is. . . Data. It should produce tangible statistics on a child's progress.
From a parent's prospective, a program without data leaves you out of the loop on your student. It's the river from which all educational decisions flow. Not knowing the results of a child's day to day activities is the same as sitting in a dark room and trying to describe the furniture from memory. You won't remember it all, and it's likely you missed something on your first look.

A program with wiggle room lets educators change the pieces without sending an autistic child into shock from too great a change at one time. Structure can help with that. Administrators can sometimes suggest programs that can be adapted to a student's changeable needs.

 Long term thinking lets parents and professionals in the field look toward the future and plan for developmental milestones. Overall goals allow parents to choose a path most likely to get them where they want to go. Whatever your goal, you should think big, maybe bigger than you can expect. That's fine. 

Thinking big and long term could get your child the next best thing to your ideal. A non-verbal child would have an ideal long term goal: communication. So verbalizing communication is the goal, but should they learn to sign to communicate you got the next best outcome. The learning disabled child with Aspberger's might want to go to college. That goal could get them the best high school GPA and result in excellent job training, even if the ultimate goal of college doesn't happen. It's easier to prioritize steps to these goals once you have them, rather than cobble together a step by step program one priority at a time. The overall goal gives you room to grow your student's program, to expand their abilities.

Athletics For Everyone?

Image via WikipediaWeeeelll . . . Maybe. Perhaps. Kinda.
Schools have a lot of obligations when it comes to special ed. students, but is an inclusive extra-curricular one of them. Obviously, a student who is able must be allowed to participate, or the school faces the music. Schools don't necessarily have to consider after school sports as part of a Free and Equal Public Education.
However, there are perhaps situations that could require a child's IEP to include such activities according to the professional website DistrictAdministration.com, an online resource for school leadership. The wisdom presented in their article, Boosting Inclusion for Students with Disabilites, suggests appropriate moments exist for schools to take on the responsibility.

"In some circumstances, however, participation in athletics and extracurricular activities may be necessary for the child to benefit from the child’s educational program. For instance, a student with an emotional disability may require participating in athletics to develop a positive self-image and acquire social and emotional skills."

This, they suggest, would be an appropriate moment to include sports participation in an IEP. As a parent sitting down for a case conference, this may be a hard sell situation, meaning there could be some resistance. Bring plenty of evidence to the discussion, if this is your goal. Teachers, coaches and administrators may need some convincing. More than that, you have to be certain yourself that it's something your child really needs.

Do schools have to provide this? Not necessarily, but there could be circumstances where they would. Behavior Plans and social skills training need to be firmly married to any after school activity to truly justify its inclusion in an education plan.

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Fighting Frustrations; When the System Seems to Be Fighting You

Image via WikipediaWhen working toward a negotiable goal with your child's school, it's possible to become frustrated, and irritated, and. . . you get the picture. Some resistance can become lots of resistance, and your sunny disposition goes right out the window because this is your kid we're talking about here. There are ways to break through that resistance and come out on the other side with relationships intact, as well as an acceptable IEP. It starts with you.

Know Your Stuff


Research your positions, so that you can communicate that position clearly and without snarkiness. We seldom snark when we have facts and figures to quote. Unfortunately, this means we get homework. Pull out the old IEP binder and get to work. The safest way to start, in my opinion, is to decide on your deal-breakers.  What issue will force you up and away from the table? Once those are prioritized, you'll know where to start researching.


Know Your Enemy

Let me reassure you that it's usually not an enemy, more like an obstruction. It's not a good idea to assume an administrator is not "on your side". Admins are very often worker bees in the hive. They have job descriptions and requirements. Seldom are these people your enemy, but neither are they your friend. These are professionals. Once you really grasp that, it's not a long jump to the next logical conclusion. So are you!

As a mother or father, you have the most diverse job description known to man. You are the resident expert on your child. The data you have on this particular student is invaluable to the school's staff. They need your input.

Treat this like a business meeting. Wear a suit if you have to! If you come at this from a professional frame of mind, it will help you be the advocate you need to be. If you are losing your temper, stop the meeting. Ask for a break or a reschedule. The law gives you the right to do this. 


Know Thyself

Maybe this makes me the cockeyed optimist in the room, but I really believe most parents can do this on their own. It takes time and work and gumption. It's hard, still is it really harder than what we do already? Any one of us can do this. 


Degrees and doctorates are not required to get a diagnosis in the family. All it takes is breathing to get that news. Most diseases and disorders are no respecters of persons. As a parent, our limitations are what we say they are. How often do we tell our child with special needs 'they can do it'? Take a moment to look in the mirror and say it to yourself. After all, you've gotten this far, right?

Progress! What's that?

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Parents get progress reports every year. It comes with the regularity of the morning paper and often with just as much bad news. Progress by school standards can differ greatly with our assessment and vice versa. Yay, he writes so well, the teacher says to Mom. But, he has no friends! Mom says freaking out.

My advice to all parents is to define first, for yourself, what progress is, and then determine if you're seeing any. We don't just want kids who can copy and paste learning. We want functional, social individuals with thinking skills. This goes for all students.

Istar is a monitor of progress, too. If you see over the course of the IEP that your child has stalled out and appears stuck on the same goals. It's time to try something else. Step one, check for a medical issue undiagnosed or recently developed. Step two, look at classroom structure to see if anything can be done differently. Step three, repeat step two or look at the options like placement or extended schoo year. Does your child need more drastic measures to move forward?


Parents can define priorities, and that helps prepare for writing your plans each year. It's okay to ask yourself what you and your child need this year and expect an answer!

New Year, New I.E.P.

Image by Beverly & Pack via Flickr

Case conference time again. Must be January. This time I'm devoting my post to my understanding of one aspect of the conference. You're all together again, catching up on old times and reminiscing about IEPs past. Oh, wait that was in my dream.

In reality, staff changes and gets busy, so a CCC can be a cold, impersonal place. I think it's helpful for parents to remember that. Everyone at that table has the best of intentions, most of the time, but you're the only one who doesn't get paid to do it, Mom and Dad.

So here's what we need to do. We need to be up on procedure. This is a legal contract we're writing, and we want it right.  There is a resource online that can help. IdealIndiana
The law alone is the discussion, but it's complete, if dry.

I like to tell parents to learn the Istart 7 system and just follow the dotted lines. Each point in there should be discussed with no skips. It's so common to rush over one section or another. Extended school year in particular gets jumped quite a bit. If that starts to occur, parents can just politely stop everything and go back to discuss it. We have that ability. Don't move on, until you've determined something even if it's that you can't determine anything at this time.

Information on ESY is confused even among professional sources. Here's the best explanations from IPAS:

If your child needs services beyond the regular school year in order to make reasonable progress, the school system must provide these services.
Extended school year services are special education and related services that

• are provided to a student with a disability.
• beyond the public agency's school calendar or instructional day;
• in accordance with the student's IEP;
• at no cost to the parent of the student; 
• and meet the standards of the Department of Education.

Each public agency must:

• ensure that extended school year services are available as necessary to provide free appropriate public education;
• provide extended school year services only if a student's CCC determines, on an individual basis, that the services are necessary for the provision of free appropriate public education for student;
• may no limit extended school year services to particular categories of disability, or unilaterally limit the type, amount, or duration of those services.

The decision about ESY services must be made at your child's annual IEP review meeting, IEP Amendment, subsequent CCC meeting, or at a meeting in time for you to challenge a decision not to provide services so that the issue can be resolved before the summer. ESY must be individualized to meet your child's needs, and must be provided in the least restrictive environment.
Remember: ESY services are not just an extension of time in school, they are not automatic, and they are not enrichment programs. ESY services are individualized services designed to give your child the ability to meet certain objectives in his or her IEP that cannot be achieved without education time beyond the regular school day.

Training is essential for a parent. You can get training at Insource.org among others, however Insource is free. Start preparing for your IEP in advance, get your documentation in order and know you have the power to advocate for your child. Use procedures in place to guarantee your IEP conference is as painless as possible. Things can get heated at times, so just stick to the procedures and talk it all out. This is too important to rush.

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Data Collection for Parents

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Each child has data. . . somewhere. The question parents must ask is can you find it. I have a system for compiling data that works even for the most unorganized woman on the planet, myself.

You'll need:
At least three sturdy binders and page protectors.


Binder 1:
IEPs: Design this binder to come with you to each case conference. Make a place for notes and questions. Keep copies of your most recent IEP there as well as all your child's current school year data; grades, progress reports, testing and evaluations.

Binder 2:
Progress- This is my catch-all binder. If I think it's data or could be data to present or analyze at any point, I keep it here. Progress reports move to this folder once I have a completed IEP for the year.

Binder 3:
Transition- We're all working toward the future, and that's what goes here. Anything pertaining to your child's graceful transition into the world. At the age of 22 in Indiana, at the latest, all children leave school. You need to sit down and ask the tough questions ASAP.

• Will he live with me?
• Will she be able to work at all?
• Will he need waiver support?
• Do we need Power of Attorney?

These aren't simple questions with easy answers, and some can't be answered yet. But it's best to begin to think about this now. Even if all you do is make a binder for things you can't look at yet, you're thinking about the future and adjusting your dreams continually to your child's progress. That's important.