What a Difference a Move Makes?

So, it's been a while. . .

Since last we talked, I've experienced multiple life changes, but the strangest one was to leave Indianapolis for , literal, greener pastures. We have returned to small, town USA in Missouri.

 First thing I noticed?

Special education here is run from the state. Now, I'm not saying it goes fast; but, already, I see a change in quality of service. Placement decisions must be justified in writing. They are made at the state DOE. Placement is by the numbers. Sure, that could become negative in a borderline situation, where you have a child who seems very abled needing more supports or a parent who really wants inclusion education with a more severe child. I can't be sure what that will look like over time, but the system I see is as well regulated as any I've ever seen.

Other thing I've noticed?

I haven't seen a single Bill or Tim here. Not one. Oh, the bliss.

There are no overpaid, power hungry directors of special education in my life at all! Just one nice lady who fills out applications and helps us work with the state and write an IEP. One nice lady. My heart just skipped a beat.

Do you know what a relief that is? Our lives, literally, felt embattled and under seige. We felt disenfranchised and disconnected from society by our son's disability. Now, I feel like all the other moms. I don't have to march on a school board or storm the state house. I can focus on what my kids need and what I want to do with myself.

The best advice I can give to parents in Indiana is MOVE...now.

How do you say it?

Image via WikipediaIn a couple weeks, I'm due to meet with the Indiana Superintendent of Schools, Dr. Tony Bennett. This week, I'm agonizing over how I'll say it. How do I convey what it's like to watch a school go downhill? How do I explain that it's not about the idea that school is the cure, but whether my son is valued as a person? How do I tell him about the human cost of bad schools in Indiana?

What if it's all about the bottom line?

Here's the saddest question floating around in my mind this morning; What if he doesn't care? It's been our family's experience that this is the biggest obstacle between our children and education. People don't always care, and, yes, sometimes they care about Darrel even less. After all, what will he be when he grows up? Autistic.

RISE Special Services may have individuals who care and work and strive, but the organization as a whole doesn't have the mission. It's lost in the pressure to cut costs and "include" because it's cheaper. True supported inclusion is expensive as any advocate or professional will tell you. It requires trained staff and equipment to make sure kids have what they need to be successful in Inclusion programs. Unfortunately, that's not the only problem RISE has.

Where do we go from here?

Last year at RISE Learning Center, the school that should be the training hub, I sat in a classroom of non-verbal students and found they never worked on reading. No one worked on communication systems of any kind, and there was little accountability on the part of the administration. That teacher is elsewhere now, but the "culture" that led to the oversight remains.

My son's IEP marks the first time in the history of RLC that an autism program has been implemented in its walls. You read that right, but I'll wait to let you look at that sentence again. . . .  Yes, my son's STAR program marks the first time in 30 years of serving students most severely affected by Autism that a program for autism has been implemented. NO staff in the school are trained in ABA at all, and the school hires out for that service at great cost.

How do you reform hearts?

Those are the problems, or at least, a few of them. How do you make someone care about your child if they don't? That's not to say he doesn't. Maybe, Tony Bennett is the one in a hundred. Maybe, I'll walk in there and see a man committed to fair implementation who is outraged at the years of lost opportunities.  Maybe, or maybe not. It's possible it will be just like it always has been when I leave.

My husband is out building a bridge this morning. The kids are off to Perry schools in the city, and I'm sitting here agonizing over education and how to change it. It seems odd. When we realized D would be different, that our lives would be different, I don't think I truly understood what it meant. I thought it meant we would grieve for the life D won't have, move on to struggle through the one we have and rejoice at the small victories each day like every other family with disability.

In addition to those things, I find myself in a crusade to reform a school for all the children who have become so special to our family, classmates and friends. How do I get people to sign up for the mission into which we were drafted? What can I say that will make them look twice at what we're doing, right and wrong? If we don't value the most vulnerable children in our society, how on earth can I make this argument effectively? It all hinges on where our hearts are.

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Power to the mommies!

Image via WikipediaThere is no need to lie to an audience and pretend that the author of this blog is no reformer. There's no getting away from what I am. If there were a sign to carry about special education in Indiana, I'd be there holding it and singing We Shall Overcome till the cows come home. It's discouraging that this is so often a bad thing in social circles.

Reformers seldom win popularity contests. They make waves, and therefore they make enemies. If you don't believe it, ask a suffragette or civil rights protester of the sixties. To bring it into modern terms, ask a Libyan or Egyptian on the streets. These are extremes, but no less difficult is the life of the mom fighting for free and equal public education for a disabled child in today's world. Instead, moms and dads of the disabled have to be in it for the long haul. A revolution has a foreseeable end, not so with disability and education coming together.

The battle to provide services for children will be fought again and again, until our society prioritizes its most vulnerable. Before I had a child with autism, I would have assumed (did assume) that we had jumped that hurdle with disability. Now, I know better.

There is an unwillingness to "waste" money on educating kids who "can't succeed". So many in our culture never think that the problem isn't with the kid, or even the disability, but with our definition of success.

I wish I could say to parents it will get better, but I don't know that. What I do know is that to change society it will take outspoken, passionate advocates, and it will take time. Parents are the pioneers to reform because they have the most to lose. We have to embrace who and what we are. Damn the torpedoes and full speed ahead!

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Separation of schools and experts; Advisory committees are getting left behind.

Image via WikipediaThis article is about the interlocal change over in Perry Township, but it's about far more than that. It's about a movement in Indiana to keep schools and school boards for Special Education schools separate from the vital information they need to do their work.

Parents and advocates are increasingly "disinvited" from participating in official capacities. The RISE Learning Center Stakeholder Committee was dissolved at the first opportunity and replaced with "PTA" interaction, however the PTA has no advocacy arm at that school and less to say on special needs issues than your average goldfish. How was that an even swap?

Southern Indiana's Greater Clark County Schools has a Gifted Ed Advisory Committee. Muncie school districts have parent advisory committees. Yet, in meetings with parents, Bill Dreibelbis and other school officials of Perry Township continually tell PTA members and leaders, "It's just not done". Gentlemen, it is done. Where people want good, actionable intelligence, they find sources. Without it, you're likely to go off-mission.

Parents and advocates are the experts. Teachers are the experts. Yet, increasingly, advisory committees are passed over and school boards are shrinking the influences of regular citizens in the policy making process. This has far reaching impact on the future of all education, but particularly special ed. Frankly, to continue with the metaphor, we may be headed for a Charlie Foxtrot of epic proportions.

RISE Interlocal

This is copied from the report published on RISE Special Services website:

APPENDIX A

BASIC LEGAL STANDARDS FOR AN INTERLOCAL
Mr. David Day, Esq., Church, Church, Hittle & Antrim, offers the following information
dealing with the basic legal standards for providing services through a Joint Agreement
or an Interlocal Agreement.


TO:  WILLIAM DREIBELBIS

FROM:  DAVID DAY

DATE:  JULY 1, 2009

RE:  RISE AGREEMENT

RISE currently operates under a joint services and supply agreement that was last
updated a couple of years ago.  The statute authorizing joint service and supply
agreements essentially allows schools to exercise jointly any power that they could
exercise individually.  

IC 36-1-7 provides an alternative means for more than one political subdivision to
exercise jointly a power that they could exercise individually.  This statute authorizes
Indiana political subdivisions (this term includes school corporations) to enter into what
are called “interlocal agreements” to accomplish this goal. The interlocal agreement, like
the joint service and supply agreement, contains terms concerning the duration and
purpose of the enterprise, the manner of financing and staffing and the methods to be
employed in terminating the agreement.  In addition, the statute provides for a variety of
ways to administer the agreement including the creation of a separate legal entity.

Unlike a joint services and supply agreement, however, which must designate one of its
participating school corporations to administer and supervise the joint program, the
interlocal agreement can either (1) delegate funding authority to the treasurer of one of
its participants; or (2) create its own funding authority.  If the latter option is chosen, then
the agreement must be approved by the attorney general.  Also, because this interlocal
would carry out the authority that is subject to control by the state, the State Board of
Education would also have to approve the interlocal here.  Neither of these approvals
should present significant obstacles.

This poses some interesting questions because we could do this differently than we do now, but will we? Our current JS&S names Perry Township as the legal representative (and I understand why they'd run the other way from that), but it's possible to continue as we have begun. While it seems to be the intention of RISE administration to move to it's own legal entity, it isn't strictly necessary or necessarily the wish of all the townships to do so. 

My understanding was that we would have to become our own entity. That isn't exactly true. SO it makes me wonder who's leaning to what and when it will all be revealed. The politics of the Interlocal boggle the mind.

Sigh.

Image by Coal and Ice via Flickr

For some time now, I've dialed back my resistance of our school's administration. I've rooted for the inter-local and wished for its success. That inter-local isn't even here yet, and the disappointment seems inevitable. A wise woman once said to me in a training that your child's education doesn't have to be a Lexus, but the state has to give you a Ford at least. Well, Darrel is kicking the tires on a jalopy and wondering where it all went wrong.


There were big plans for ABA training. It never happened. Neither did TEAACH or anything else for that matter. We got a parent on the Autism Team for the township, and I was so excited. Oh, what we could do! Nothing. That's what we could do. Nothing happened.

 We have so much technology, so many programs, and so much we could use to make our kids functional. It wasn't a matter of cost. I know that will be the excuse given, but it's just that, an excuse. Implementing policy in the classroom usually doesn't cost a dime. The price is will-power. Orientation training for teacher's assistants who do the lion's share of the work, that takes time, but it's worth it. Autism training which is mandated isn't even happening consistently.  What does it all come down to? I have an answer, but it's not PC.

How the heck will we include the most severe students if we don't even give them comprehensive tools like sign language, PECS and behavioral training? The answer: we'll pretend we did. We put them out in a self-contained classroom or a general education setting and pray for divine intervention. One day, we'll be right back in that CCC discussing suspensions and change of placement. It's not good enough. Sorry, Indiana, but you are flunking out in special education.

Then to hear things from so many professionals and even advocates like "it's happening everywhere!" as if that excuses our failure to make it stop happening. Again and again, I've seen what true intervention can do for a child. I'm sick of being told it takes money! No, it really doesn't. It takes effort! If I can do it at home, you can do it at school for free.

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Oops, We Did It Again

Perry Meridian Middle School in Indianapolis and RISE Special Services have done it again. The story found here at channel 6's website charges that teachers have once again used bad methods to correct good kids. There are better ways to correct behavior, but the Powers That Be don't seem to know it.

Documentation. Documentation. Documentation. To change a placement for a student or start an intervention of any kind, a family needs to be able to produce raw data on that student. In the absence of data, the school can be forced to comply with the request. Within the townships, there seems to be a standing policy to avoid documentation of behaviors. Why? Because a more restrictive environment is costly? Perhaps. It could be laziness. It could be inattention to detail; but, whatever the cause, it's pervasive.

The Director of Special Services has repeatedly denied the consideration of cost at case conference committees discussing placement. He has also discussed at length the 20,000.00 per child cost for sending students to RISE Learning Center in Perry Township. When requested, parents have been told on many occasions that the 20k price tag cannot be, or simply has not been, itemized to determine what the facility truly costs line by line. Some parents charge that it shouldn't be that high. The cost of a satellite classroom is a comparable 7,000.00, and GenEd settings cost even less.

School staff are blowing the whistle in all the townships, telling others that they have been told RLC is not an option for new students. Preschoolers are directed to the least restrictive setting automatically, however, no new students are assigned to the comprehensive intervention classrooms each year. As a parent, I can be my own source on that point. My son's class does not grow. I'd be overjoyed at that fact, if so many kids didn't pop up in bad placements every year. Putting a child in a less restrictive environment should be based on data that is routinely not done in the four townships. I believe some of this is cost cutting, but some of it is something else.

What does a separate facility do for students? Some will tell you they promote discrimination as surely as any segregated school ever did for African-American students. Some say it allows peers to avoid contact with disabled students and sets them up for prejudice. That could be considered true, if general education settings weren't appropriate for verbal, high functioning individuals. Children who need less intervention should ALWAYS be placed in these regular classes. Some would call it warehousing. That is a matter of opinion. I would call a bad placement with insufficient services warehousing, and through no fault of the schools that is exactly what is happening. They just aren't set up for the severely disabled.

What happens at RLC that is so different? Focused attention on behaviors and concentrated effort to make a child as academically and socially abled as possible with the intention of dialing back the intervention is the goal of that facility, which is one of two in the whole state. The goal should be inclusion, but including students without skills makes little sense. Satellite classes are understaffed and under trained in Rise Special Services Program which brings us right back to where this article started. OOPS.

We did it again.

Tax Dollars Circle Drain- More at Eleven

The Governor has done it again. He has found more ways to piss away the tax payers money. Fiscal responsibility never looked so frivolous as it does in the lawsuit against health care. The constitutional precedent is there and the attorney general, Greg Zoeller, chooses to ignore that precedent in the name of politics.

According to eyewitness news, Indiana joined thirteen foolhardy states in an expensive attempt to overturn legislation they don't like. "I believe that it's in the best interest of all and that includes those people who support the new legislation that we raise the constitutional questions that are apparent to the United States Supreme Court," said Zoeller; this, from coverage of the event. It is in all our best interests to engage the state's funds in a legal battle that will not be won. OOOkay. Is there any other response, but to shake our heads in wonder and amazement?

Meanwhile back on the farm, Indiana schools had an average shortfall of 3 million per district. That was the average. Job after job has gone on the chopping block in area schools. Industry is moving out of our state, and the governor issues marching orders to engage in frivolous spending. Indiana is no longer the republican bastion it once was, and this lack of fiscal common sense seems poorly judged for our man, Mitch.

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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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Image by kvitlauk via Flickr

Indiana is special when it comes to special education. It has a dream. That dream comes in the form of a law, but it's far from being a reality. Article Seven dictates to schools how disability should be handled in the state. Placement should be appropriate and definitions of what is or is not appropriate run us aground each and every day.

My experience of case conference committees has been both sad and typical. It's a battlefield whether it should be or not, whether that's right or not. It's parent against school, and the things you don't know are the hardest to overcome. Funding, politics and even individual egos, theirs and yours, must be navigated like a mine field.

So I treat Article 7 like a beautiful dream that must be realized and, even tweaked, now and again. The bottom line is that these aren't rights until you no longer have to ask for them. Maybe I'd be more patient if I was asking for my own, but it's Darrel I worry about, the time he's losing, the things that need to happen before too long. Not a cure, but a life lived with minimal assistance would be nice. Speech might be good, but I'll settle for coping skills, his and mine. This leads to all the conflict with schools I can handle because some things are just right.

Where do schools fit in all this? If we're the dreamers, are they the dream? Article 7 is all about education, and therefore depends on teachers, administrators and even local government to become reality. That's the rub. Parents and students depend on them, so they need them to be dependable.

My frustration probably comes from that, but also from the dealings I have every day with people I perceive as my son's best hope for functionality, and I forget that they may not see it that way. They may see it as a job, maybe one they love. But they go home to an autism free zone perhaps, and turn on the TV or help their kids with their math homework. Meanwhile, I'm at home trying to interpret a screaming fit or medicating someone. Sometimes I'm dodging teeth or fists because that's where we are that moment. Those professionals don't often live where we live. Living with severe disability isn't something you can turn off, so we're always in crisis mode.

Learn patience is the lesson for the day. While everything may seem immediate to us, it's really not immediate for everyone else. Get up each morning and move firmly forward with purpose, but don't run over anyone. "Here endeth the lesson."

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