In a perfect world, we'd all be lawyers.

Image by dbking via FlickrParents of disabled children already wear many hats. Since IDEA, we've had to don yet another and hang out our shingles whether we wanted to or not. At least, those of us who were able. It's the rest of that population that is our subject today.

As I've said before, Indiana's Article Seven and IDEA guarantee certain rights for the disabled student. Is that enough?

Most emphatically, NO.

In order to navigate the system, I had advantages. One, I had only some college, so my husband and I recognized my time was most valuable at home. Little did we know, it would be imperative. Two, I found training in the law fairly early on in our journey, and made a study of it ever after. Three, when I did get part time work, it was as a substitute instructional assistant in my son's school. The rest was history.

Our son has needed a lawyer almost from day one, and we couldn't afford one. We had to make do with my makeshift law degree. This gave us access to the complaint system, but it still denies us access to due process. Without access to the courts, our battle has had to be a political one. Squeaky wheel gets the grease.

The primary problem with that is that I didn't stop squeaking. I discovered a whole school of students without speech therapy and went to war alongside their parents to make the school do the right thing. One thing led to another, as our parent's group discovered violation after violation of the law and went to work on them. Now, I attend conferences and consult with parents on their IEPs in my spare time, and we still miss things.

Article Seven is a law with all the whys and wherefores that entails. It isn't easy for a housewife with some college to navigate, and, for some, it isn't possible. Many of my friends work a job, or a job and a half, on top of parenting a disabled child. They can't put in the hours that I have. Single mothers, forget about it. Many parents don't understand the law because it's a law, and that's why we have lawyers. A majority of us are broke what with all the medical bills.

A law without access is like a dance without music. It's missing something. When lines are drawn on a socio-economic basis, it's called disenfranchisement. Being unable to enforce your child's education because it's too expensive isn't much off the days before the wheelchair ramp.

So, families need a ramp. Teachers are a natural advocate for a student. They know the information and usually have the willingness (or did they pick the wrong job!). However, teachers answer to administrators who answer to superintendents who answer to politicians. You can see the problem. Our schools need to get back to the days when teachers were the advocates for families and let them make the recommendations that make sense for the child.

In the event this relationship breaks down, the simplest, second-best thing is to get the school, who failed to nurture the parent/teacher relationship, to pay for the family's advocate. The advocate doesn't have to be a lawyer.  Most often, it's a mom who did this on her own. Every advocate I know was the mother of a special needs child.

This would give all parents access, and advocates are more like coaches. Therefore, the training the parent would receive as a result could allow them to advocate for themselves in future. At the very least, it would put the parent back in the Case Conference Committee as an equal player and not a subservient.

Does Indiana have FAEPE? Meh.

Image by Jim Nix / Nomadic Pursuits via FlickrOur recent experiences as a family in the special education system of Indiana have illustrated a new social problem for Hoosiers, but perhaps for others across the nation. The idea behind IDEA and all its sister laws was to guarantee equivalent education for the disabled, and maybe, at the time, we didn't know what that really meant. There's great cost involved.

To be realistic, there are good teachers, bad teachers, great administrators and bad directors everywhere. People are people, and just being an educator doesn't guarantee good intentions. It's true of any job, but in few places does it have more effect than in education. Education becomes slave to local politics. That is directly juxtaposed to the intention of Article Seven and IDEA, the laws governing our treatment of disabled students.

Parents, already financially strapped due to massive medical bills, have a law that allows them the right to advocate for their child. Great! How's that working in Indiana?

It's not. Not really.

Children take what they are given, and services do not always follow the individual needs of the child as they are meant to do. Why? Because politics demands cost cutting somewhere, and these kids are most vulnerable to that reduction of funds. Sadly, discrimination still exists, and it's most apparent at school board meetings where equal is defined in a school district. So why don't parents sue? There's a law, right?

While the law guarantees the right, it doesn't guarantee access.
Money does that. Money that disabled children and their families don't have because they are disabled. The weakness in the law falls in the category of socio-economic disenfranchisement. In the next few posts, I intend to explore the subject further; looking at the details and discussing options that lawmakers and administrators have at their disposal.

A not so quiet crisis

Cover of HoosiersIn Quiet Crisis  
Follow this link and you will find stories of families and individuals facing disabilities with few services and true grit. Advocacy for persons with disabilities is on the rise in Indiana. It's a sad development because it means disabled Hoosiers need advocates.

Get involved with your local advocates today! Developmental disabilities wait for no one.  Autism, Downs syndrome, and other disorders happen each day whether or not we're prepared to deal with them.

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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Who's predjudiced against disabled kids? Not us.

Image via Wikipedia
Autism, as any parent who has gone through diagnosis and reached a severe disability can attest, is one long chain of obstructions and missing pieces. It's usually the missing pieces that cause the obstructions. When they don't make eye contact, it becomes hard to decipher what they mean or what they want from a parent. When children don't speak, they can't tell you what they like, who they are or why they did that. We noticed the holes first, and then later we saw the problems as they grew, and we ran off to the doctor hoping to fill those holes. Really, let's be honest. Early days are where we hope that it ain't so. We want them to be able, to be strong and live a full life rich with promise.

But doctors aren't the answer with autism, at least not yet. So, parents listen while professionals tell them in broad strokes what's wrong with their child, what they won't do in all likelihood and how to find resources to help the family cope with the disability. Once parents leave a doctor's office with a dazed look on their faces, they have to choose to make peace or make war with the disorder. They will spend years looking for ways to get to the child inside, some of them with amazing success. Some will work in vain, and never get to the place where they don't have to worry what will become of them, who will take care of them.

Why is autism, why is disability, so devastating? Perhaps, because in our culture we worship ability. We deify captains of industry, Olympic athletes and prize winners.  We celebrate success and reward it. Conversely, we may devalue those without. Let's not kid ourselves, we certainly devalue those without ability.
The homeless man standing on the corner of Market Street. The uninsured single mother who didn't finish high school. The unemployed veteran who can't keep it together on the job since that last tour. There are few excuses we accept as a society for a lack of productive ability. Never mind that the single mother works two jobs and still can't make ends meet, and never mind that the homeless man was abused horribly by others in his lifetime. It's not a good reason for not trying now, right? Individuals who overcome, pull themselves up by their bootstraps, are the deserving. So what if they can't? Can't, as in, do not have the ability.

During a school board work session here in Perry Township, I listened as the allocation of special education stimulus funds were discussed. Shockingly, Gwen Freeman, a Perry school board member and candidate on the Take Back Perry Schools ticket, expressed her concerns that money in the general fund should not be used for the new REACH program aimed at the higher functioning, emotionally disabled of Perry Township. She wanted to be sure that "children who do work hard and do succeed have access to the funds they need". As a mother, it's a statement that struck fear into my heart with its implications. Children with emotional disability "choose" their behaviors, therefore it's their responsibility to meet the benchmarks. She didn't seem to get that it's our responsibility to get them there at all. Though she had the grace to look embarrassed by her remarks (when they were explained to her), it stuck with me, even though I'd encountered discrimanatory remarks about the disabled before that night. It worries me to this day that there are those like Mrs. Freeman in positions of authority over my child's education and its funding.

 Persons in power reflect the values of a society, even a corrupt one sometimes. So as Americans run through the debate over health insurance and whether it's a right or privilege, and run around on TV calling everything and everyone retarded, I wonder sadly if we aren't showing clearly that we value ability. You deserve to be respected based on level of ability. Individual health is wrapped up in the ability to pay for it. Are these the values of our society? And what happens to my son in such a society?

It's a worrisome train of thought, but the questions need to be asked. To truly effect social change, it seems likely that first we need to address social attitudes.

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Case conference recordkeeping; what should you keep?

An early blog article on 15 minutes discussed keeping a notebook just for your conference, to keep and take notes and to organize anything you may be given. Another possible time saver for a family is to make your own report.

It's simple to make up your own form to document all that occurs once the case conference begins. It may sound stupid, but date everything. This gives you a frame of reference for when particular events occur.

Be sure to document each attendee and if they were excused for any amount of time. This gives a parent a sense of who was there and said what. It also helps to keep the names with the faces.
List the issues you wish to discuss. This will be particularly helpful during the conference, keeping you on track to discuss each concern and ensuring you get to them all in good time.

Parents might find it helpful to allow space for listing what was actually discussed, in case the conference gets away from the participants. It helps you track weak points in your own conferencing style as well. While we love to hear great things about our kids, there's only so much time to talk.

Leave space for the outcomes. What was decided today and how will we implement it? Later on, it will be useful to have something to refer to when you discuss your conference or decisions made there. There will be no doubt in your mind what agreements were reached and when because of your thorough dated notes.

Keeping copies of a form makes for easy prep. You can grab the form and stuff it in the file on the way out the door, and always have clean notes from your conference.

Transition Fair at Rise Learning Center.

This event is a great resource for all parents, but a must for those of us approaching the teenage years. It's run by a dear friend, Joni Atkinson. She's been doing this for 23 years and taught me almost everything I know about transition. Her Facebook explains:

The transition fair has a variety of different booths for parents of students both young and old to gather vital information for their student to be successful when transitioning out of school. There are people from Vocational Rehab, BDDS, SSI, Medicaid, Stress Centers, Supported living, Supported employment and the list goes on and on. This information is so vital to get out to all parents of students with special needs. Anyone that you know that could benefit from additional services should partake in this event. Everyone has a chance to meet people and develop a bridge of communication. Please spread the word to let everyone know that this event can be very beneficial. We will also have a spaghetti dinner that is $5.00 for adults and $3.00 for kids. Please rsvp asap!!!!

The Fair happens Tuesday October  26th at 5 pm.
5391 shelby here in Indy.

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A word on inclusion from Wisconsin

Image via Wikipedia

There are no comparative data available on special education students' academic gains, graduation rates, preparation for post-secondary schooling, work, or involvement in community living based on their placement in inclusive vs. non-inclusive settings. Therefore, an accurate comparison between separate programming and inclusive programming cannot be done.
The following is a brief review of a number of studies of various inclusive strategies. There are a number of reviews and meta-analyses that consistently report little or no benefit for students when they are placed in special education settings (Kavale, K.A., Glass, G.V., 1982; Madden and Slavin, 1983). However, in 50 studies comparing the academic performance of mainstreamed and segregated students with mild handicapping conditions, the mean academic performance of the integrated group was in the 80th percentile, while the segregated students score was in the 50th percentile (Weiner R., 1985).
Using this evidence, inclusion proponents claim that segregated programs are detrimental to students and do not meet the original goals for special education. Recent meta-analyses confirm a small to moderate beneficial effect of inclusion education on the academic and social outcome of special needs students. (Carlberg, C. and Kavale, K. 1980; Baker, E.T., and Wang, M.C., and Walberg, H.J., 1994-95).
Another study assessing the effectiveness of inclusion was done at Johns Hopkins University. In a school-wide restructuring program called Success For All, student achievement was measured. The program itself is a comprehensive effort that involves family support teams, professional development for teachers, reading, tutoring, special reading programs, eight-week reading assessments, and expanded opportunities for pre-school and kindergarten children.
In assessing effectiveness, a control group was compared with the students in Success For All programs. Comparative measures included:

• Woodcock Language Proficiency Battery (1984)
• Durrell Analysis of Reading Difficulty (1980)
• Student retention and attendance.

Comparisons were made at first, second, and third grades. Students identified with exceptional education needs were included in all comparisons. While assessments showed improved reading performance for all students, the most dramatic improvements occurred among the lowest achievers. In spite of the fact that these inner city schools have normally high retention problems, only 4% of the fourth graders in the experimental group had ever been held back one or more grades, while the five control schools had 31% who had failed at least one year.
There was a similar finding in the comparison of attendance rates. The research also found the best results occurred in schools with the highest level of funding. They concluded that when resources are available to provide supplementary aids, all children do better.
The primary importance of research on Success For All is that it demonstrates that with early and continuing intervention nearly all children can be successful in reading. Common practice in compensatory and special education is to identify children who have already fallen behind and provide remediation services that last for years (Allington and McGill-Frazen, 1990). Research on Success For All and other intensive early intervention programs such as Reading Recovery (Pinnell, 1991) and Prevention of Learning Disabilities (Silver and Hagen, 1989) suggests that there are effective alternatives to remedial approaches.
While researchers are cautious in their conclusions, there are some positive signs. In particular, students in special education and regular education showed several positive changes, including:

• A reduced fear of human differences accompanied by increased comfort and awareness (Peck et al., 1992);
• Growth in social cognition (Murray-Seegert,1989);
• Improvement in self-concept of non-disabled students (Peck et. al., 1992);
• Development of personal principles and ability to assume an advocacy role toward their peers and friends with disabilities;
• Warm and caring friendships (Bogdan and Taylor, 1989).

The final issue shared by proponents of inclusion relates to cost-effectiveness. A 1989 study found that over a fifteen year period, the employment rate for high school graduates with special needs who had been in segregated programs was 53%. But for special needs graduates from integrated programs the employment rate was 73%. Furthermore, the cost of educating students in segregated programs was double that for educating them in integrated programs (Piuma, 1989).
A similar study by Affleck, Madge, Adams, and Lowenbraun (1988) demonstrated that the integrated classroom for students with special needs was more cost-effective than the resource program, even though achievement in reading, math and language remained basically the same in the two service delivery models.

It is normally not my practice to cut and paste, but this information is hard to come by for parents. It's especially hard to find unbiased resources like the Wisconsin Educational Association Council who report just what is. 

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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Makin' WAVES at the Y

Image via Wikipedia

Waves started at the Baxter Y yesterday. Swimming lessons for the disabled are not just fun, but essential. There isn't much available for our kids in the Summer, but this program always has a waiting list. Now, I know why.

It was amazing. A one-on-one lifeguard for each participant, participants of every age group and disability, and the incredible Y facilities are the recipe for the perfect Summer activity for autism. Non-member cost for the program is approximately 150.00. It runs for 8 weeks.

This Y also offers sensory motor sessions, but, sadly, there are never enough takers for the class to be held.

Best of Intentions

We seldom think of school administration as a high-flying career. One could easily imagine it as a thankless job with little reward other than the love and devotion of the families served by one's efforts. One could, but I don't. I've seen the hubris sometimes involved in the choice. There's a micro-chasm of power there, and sometimes, every now and again, individuals are attracted to that power.

In all my training as an advocate for special needs families and as a parent and employee of the school, I've been told again and again that the key to communication is knowing everyone in the room has the well-being of your child at heart. Employees of the schools, after all, went into this profession to help others. They love children. They want to help you.

How I long to believe! It just hasn't been our experience here in Perry Township. I have yet to figure out what the benefits are of being stingy with services and occasionally ignoring the law completely; however, there must be some kind of payoff. It happens far too frequently. Perhaps, it's prejudice.

I know Rain Man seemed cute and cuddly, but all too often disability is hard to understand and downright repulsive.  Put down the pitchforks. Wait till you see the reality of the "playing in feces" stage and tell me how you like it. I loved him through it because I'm his mother. Others aren't so motivated. There's some slobbering that can be encountered on the spectrum and lots of potty trouble. Students who vomit intentionally can and do happen. These things don't bother me because they are our kids. They belong to each and every one of us, and so do the hangups. It's our problem to solve, not theirs. It gets to some people.

The disabled also remind us of our own frailty. The fragility of the human body is a fearsome thing to behold. Perhaps, the negative experiences I've had with administration can be traced back to their own fear of mortality. Maybe it's all this complicated and this simple. I can't be sure, but my faith in the law and humankind is failing.

As a mom, I've seen too much to believe in the innate goodness of man. Fiscal conservatism often seems to translate differently to different people. To me, it would include not wasting money, directing it to services that are appropriate and valuable (like Special Education) instead of to the things that get us elected and do little good. To others, and if I'm honest, most others I've met who claimed that label, it is simply not having to pay for something that isn't your responsibility. That's where every man's conscience comes in and where I get nervous. My kid is no picnic and one day he'll be a very large, severely disabled man with two-fisted impulsivity issues. How will these people receive him? When his autism has drained me, where will he turn for care? And will those people be as unreceptive as his school has been? I'm not optimistic.

Inclusion in Perry Township is not done well or with much effort. Children out in the general ed. setting find very little compassion or understanding when they are inappropriately placed with typical populations, and I wish it was only the kids I worry about. I've encountered principals and teachers who just disliked a child for their autism, saying it's "an excuse". That principal couldn't understand that it was a reason, not an excuse.

RISE Special Services has one separate facility for the severely disabled student who can't go to their home schools, and I'm seeing the push. The end of that safety net for all involved nears by the day. Parents don't know it's there because they aren't told. When something goes horribly wrong in the home school, they may find out by word of mouth, and then it's a fight to get them in there. Parents who need this facility and ask for it are told they are "warehousing" their kid. However, that same kid may have just arrived from an environment where he was strapped down all day as my son was, and then they tell me I'm ruining his socialization. Please.

Instead of comprehensive intervention, preschoolers are directed to satellite programs with little training for the teachers trying to run them. Are there good teachers? Absolutely. They came that way. The township had nothing to do with it, and those teachers do not get the support or supervision they need from trained and competent administration. Often, the administrator has less clue than the teacher! Students in that separate facility are frequently farmed out only to return again when it was too dangerous to keep them out with typical peers. Many continue through their home school and age out of inappropriate programs. Thus, the population of that school diminishes each year, and the law suits abound.

What does it all mean? It means that we will shortly have blanket inclusion in the townships, and the choices for parents who have children who get violent during melt-downs or self-injure will get limited to keeping them home for school which limits them further to five hours of very expensive schooling per child each day. There will be incidents. Someone will get hurt. Where is the difference there with institutionalizing the mentally ill? Where is the fiscal conservatism in pushing the severely disabled out of the schools altogether to educate them at home? 

Currently, Perry Township has three environments for special education; general ed. classrooms, satellite classes located at home school locations, and Rise Learning Center, a separate facility focused on comprehensive intervention. If all those fail, you have the option of home-bound instruction.

Someone, recently said to me proudly of Indianapolis Public Schools where inclusion is the only option, " The disabled kids are there, and everyone just had to deal with it." That about sums it up. Yet, IPS doesn't have a spotless record or a good reputation. Could it be that they are using inclusion badly just as we are? Throwing autistic students into the population and saying, "Go!"is not inclusion. Inclusion involves peer education and social supports. It involves intervention and accommodation. Further, sometimes those things aren't enough, and we end up warehousing the child in an inclusion classroom.

Perry Township has got to get a hold of itself. Nothing changes, unless we change it. Parents have to organize and get involved. Learn about real inclusion and the options available to your child. On the other hand, I hear Johnson County is nice. Plenty of my acquaintances have taken that option, just move.

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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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