Information for parents of disabled children

Tuesday, April 26, 2011

RISE Special Services Q & A

3D Character and Question MarkImage by 姒儿喵喵 via FlickrMay 12th seems to be the magic day for parents of SPED students in the four townships, Beech Grove, Franklin, Decatur and Perry, to get answers. Here is my submission to the RLC PTA for the event.

  1. What will the top down structure look like?
  2. What voice will parents have in policy building, such as parent members of an advisory committee? 
  3. What steps will be taken to insure transparency in policy building?
  4. Will parent education, including information on law, teaching methods and advocacy for their student be a priority for the interlocal? If so, what mechanisms will be in place to deliver this service?
  5. If parents have a dispute with specific administrators, who will be the mediator in order to avoid the complaint process provided by DOE? Will you institute a formal process to give parents access to objective mediation which will help the schools avoid expensive due process proceedings?
  6. How will the interlocal improve staff and administration training across all environments, classrooms, bus transportation, etc.?
  7. The school has been given orders of correction this year for violations of the individualized education plan for several students. What system of checks and balances, staff training and administrative supervision will you put in place to avoid this in future?
  8. What definitive standards will be put in place to determine teacher and administrative performance?
  9. Who will be the administrative staff of RISE Learning Center?
  10. Will Administrative staff in all the townships receive extensive training and professional development through the new Interlocal? If not, why?
 If you live in one of these townships, you can submit your questions to RISE Special Services at 5391 Shelby Ave. Indianapolis, IN 46227 . 317*789*1650 Time and Location to follow.
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Friday, April 15, 2011

This morning, it just hurts.

May_30_Health_Care_Rally_NP (585)Image by seiuhealthcare775nw via FlickrSo much was easy when I was young, even medical care, and I was thoroughly unaware. I get it now though. Especially, dealing with my teeth.

This morning I woke up with a swollen mouth. It's a tooth I tried to have pulled at a low-cost clinic a while back. For 45 minutes and forty dollars, they pulled, only to tell me in the end that I'd need an oral surgeon.  That means it stays, and I wait. But, for what?

For our family, it's become a waiting game. How long till the insurance? Just a few more hours and we qualify. We just have to make it a month or six. The jobs just have to be there, and they haven't been steady as any ironworker will tell you.   If you read my blog, then you know we have an autistic child.

Some of the political rhetoric has been pretty strong; war on the middle class, the plan is to die sooner, and on and on. They are strong words, but I get what those words mean at this moment. We did what we were supposed to over the years. We worked, and then one day, insurance was hard to get. It just wasn't there. We even did a tour in Iraq or two, to get it temporarily. We live in a city where I could walk to a dentist without breaking a sweat on a July day. If I could afford one. Even on insurance, I can't afford it, since most is fifty percent coverage. For me, that left $8000.00 on the bill. We can't. We just can't. When things get this bad, you feel like it's a war. It's as desperate as battle, and sometimes, like now, it feels like life and death. It is life and death. A tooth can kill you eventually.

I could write about how it's fiscally damaging to not provide health care for those on the poor end of the spectrum who are important to the workforce. I could tell you all about how when I am gone, when my husband is gone, we don't know where D will end up. I could wax eloquent on the subject of biblical truth and the qualities of mercy not being strained, but not this morning. Because this morning, it just hurts.

And I wish it would stop. It hurts that something as stupid as an infected tooth could kill me living in America, that living in these modern times nothing has really changed. I feel like a failure, and my jaw is sore. I'm tired and in pain. This probably just sounds like angst to your average boot-straps kinda guy, but life can't get more discouraging than this. Just. . . if you have it, be thankful for it.

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Saturday, April 9, 2011

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

US Supreme CourtImage 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.
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The home/school connection and shooting the moon.

Indianapolis Children's MuseumImage by Brandy Shaul via FlickrWhy are administrators required at case conferences? Simple. They commit funds and services. The end.

Administrators are the final authority on what can and cannot be implemented. Now, does the law say cost is not to be considered? Yes, it does, but the unspoken truth is that it is considered and will always be. That's why you have to have the admin present. Though the teacher is widely considered the primary representative,  his or her boss is the heavyweight.

And while parents hold directors of special education responsible for results in the classroom, school boards and superintendents squeeze them in the pocketbook more often than not. So what if we took the administration out of the picture? What would parents and teachers do if left to their own devices? Imagine a case conference with no politics involved.

Probably, teachers would do exactly what they wanted to do all along; write the perfect program for the student before them. What are they doing with an administrator's oversight? They are considering how best to meet the student's needs on the budget understood from the get-go. We all see the practical side. You have to know how much something costs, right?  You can't dream big on a budget.

Besides the obvious benefits of early intervention, there is a cost effectiveness to early investment in disabled children. Most development will happen during the school years, and the potential for development is the foundation for independence later in life. Clipping special education funding now will lead to larger bills in the future. It's the difference between 24 hour hospital care or assisted living with minimal assistance.

How do we get school districts on board?

We could do what we do now, and trust administrators to do the right thing. We could pass even more laws that we will weakly enforce. We could take a different road altogether, since what we're doing isn't working. How bout we take the administrator out of the conference till the end? And then his job is to get the desired services on his budget or broker some sort of solution with the family to keep impact on the child minimal.

We could put a premium on the parent/teacher relationship by removing external pressures to ensure that all recommendations are made in good faith and by the two or three most appropriate people in the child's life. Goal centered education should consider all the possibilities, and then break down the logistics. It's corny but true, that old saying; Shoot for the moon, even if you miss, you land among the stars. Why not let our teachers shoot the moon?
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Keep the ball moving.

Conseco FieldhouseImage by thoth188 via FlickrPerry Township schools are home to RISE Special Services, soon to change their name; and one hopes, their practices. This township is the gold standard, for how to get special education wrong. If you want to know what not to do, look no further. RISE is a shining example of how to move the ball without scoring actual points.

Testing Optional

A shortage of funds has led to a shortage of professionals in an era of massive student demand. This was the argument administrators used to justify the change to testing policy for disabled students. Unfortunately, this is also an excellent way to cut costs. Testing equals data on the student. Data equals information. Information equals power for teachers and parents to make recommendations regarding program, services and staffing. This testing no longer has a mandatory deadline of every three years, again due to a lack of psych staff in schools, according to administrators.

There is no doubt that school psychologists are overloaded. However, the removal of mandatory testing guidelines has the unique ability to drastically reduce the amount of services considered appropriate for a student, and that inevitably lightens the school's load. Parents can trigger re-evaluation, but many don't know that or take the school's recommendations that testing is not necessary.

Call me suspicious, but this sounds like a sweetheart deal for directors feeling the pressure from school boards across the state to cut back. And it comes with a consequence proof excuse to give the state DOE. It wasn't required.

Testing is only one benchmark to evaluate a student's progress, but it's the one most considered when discussing a change of program or placement, both can be expensive. This means a child could languish in a program that is no longer appropriate or miss out on a chance to include with normal peers for lack of data.

Perry Practices

By and large, parents of mildly disabled students notice nothing lacking in their child's education. Those who are easily included in general education usually have no trouble getting minor accommodations for their student. It's the other end of the spectrum that has a wrench in the works.

Besides oodles of administrative redundancy, Perry has an overall unfriendly way of dealing with parents. Lawsuits are way up, according to Bill Dreibelbis, but he's quick to point out  that we live in a sue happy society, and it's the nature of the beast. That's one interpretation, or we could be doing something wrong. The fact is that complaints with the state are up, too, and testing isn't automatic. Couple this with parent dissatisfaction with staffing discipline and training, and you have a perfect storm of malpractice. Of course, the motto seems to be that it's all good, as long as we keep the ball moving. Hitting the hoop is secondary.

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Does Indiana have FAEPE? Meh.

The Indiana StatehouseImage 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.

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