Memorial Day - 2010

Voice of The Fallen
by Alex Kaye

far away a voice is calling
someone long ago, who’s fallen
I listen hard and hear it say
hear me on memorial day

under the colors, of a flag true
I fought a war and died for you
oh listen to me when I say
hear me on memorial day

you knew not me, I knew not you
the war I fought was just, and true
I knew just what I had to do
the duty of a chosen few

oh listen mother, hear me dad
don’t be angry. don’t be sad
war is dark, notorious
but the goal was glorious

listen to me, hear me say
I died for freedom on that day
I did not die in vanity
I died for all humanity

and as I lay here, dying, dying
I think I hear some voices crying
I think I hear my mom and dad
but no, these voices are not sad

I thought, I’s sure my fate was sealed
I thought I felt the killing steel
I watch the battle from the ground
I only see, I hear no sound

how things are clear. a perfect sense
the struggle of the innocence
oh if I’d known before the war
it is the same side we fight for

I was only just a knave
but my heart was strong, and brave
the duty of a chosen few
I did just what I had to do

sometimes I’m your brother older
sometimes I’m the unknown soldier
if I could only make you see
we all are one, humanity

through the silence hear me say
remember on memorial day
remember what this day is for
remember me, and stop all war

Season Over

Four children with IEPs. Six meetings in the last six weeks. But I am done for this school year!!!

It’s so interesting to me how different IEP teams conduct meetings differently. Now all these are in the same school district, a school district that is OCD about following the rules (except when they don’t).

For Jessica’s IEP, the team just passed the document around via email. We had our discussions via email, and appropriate changes were made. Then I signed the document electronically and sent it to school electronically.

Ronnie’s IEP meeting, the first held for him in this school district, involved 16 people and two attorneys. The attorneys were not for the reason you probably suspect, but for now, I can’t share anymore. The final result however was that 2 weeks later, a great IEP had been developed for Ronnie’s transition to his new school.

Ashley’s IEP meeting was pretty run of the mill. Of course, that has not always been the case, but I think we are finally re-establishing good working relationships. Until high school, her IEP meetings were always contentious, lasted hours, and often ended in mediation and once in due process. But this year was fine. She has a good IEP and next school year is looking to be a positive experience, much like this first year of high school.

Then, we had ESY IEP meetings for both Ashley and Ronnie. Again, no problems and good results.

Today I finished up with Corey’s IEP meeting. Corey’s meeting was only attended by me, the case manager, and a general education teacher. Of course, we were missing an administrator, but I was too tired of meetings to quibble about that. Corey’s meeting was interesting because of the contrast between Corey’s actual abilities and his motivation to do a good job, or even a passable job, at school. It’s tough to write goals and objectives when the primary reason Corey is failing 11th grade is lack of motivation.

Also, because Corey can’t plan and imagine a future any further than tomorrow, we did beef up the IEP with objectives requiring him to explore and consider life after high school. I am so worried that he will eventually squeak through high school, and then have absolutely no place to go. College isn’t looking likely. The military, his first choice, is even questionable. I proposed to the team that we hit hard on some vocational skills and they agreed. So, we ended up with another good IEP.

Other than all the time I had to take off from work, this year’s IEP season wasn’t too bad. But I am really, really glad it is over!

A Day In The Life of a Superhero

Ronnie, aka Super Ninja, starts his day by donning his disguise - an improbable mix of plaid and checks designed to throw off anyone who might suspect his true purpose in life.

He goes about his day at school, laughing with his friends, charming his teachers, and always playing the loveable little geek. To further throw off his foes, he even picks up orthotics designed to mask his true superhero powers.



But once home and back in his lair, he and his partner ninja, Mark, meet via the video phone to plan their next crime thwarting adventure.



The world is indeed a safer place tonight because of the presence of Super Ninja Ronnie!

Special Exposure Wednesday

This is just what I needed to see - a smiling neurosurgeon!!



Dr. McYummy had good news to share with us - Ashley's tumors have not grown! He said we will do MRIs annually for two more years, and if they reveal no changes, we will go to every 5 years.

There are a couple of things still to be tended to though. First, Ashley has had some weakness in her right arm and hand. She will be having an MRI of her spine to see if there are any issues there. (Remember, the disease she has can cause tumors to grow anywhere....).

And, Ronnie is going to have x-rays of his shunt, from head to belly, just to get a baseline. Dr. McYummy said everything looked good with the shunt. He felt around, and checked a few things that might indicate a problem, but nothing caused him concern.

Two good pieces of news!!

Happy Wednesday everyone, and make sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Dr. McYummy Day!

Today is Dr. McYummy day! Ashley and Ronnie will be visiting their neurosurgeon. I'm anxious to get the results of Ashley's MRI, and the handsome doctor will also be checking out Ronnie's shunt.

I'm very nervous about the MRI results, but figure if there was anything major, the film reader would have contacted the doctor and he would have contacted me. But still, I'm worried.

And Ronnie is worried also. The last thing he needs right now is problems with his shunt. He isn't exhibiting any symptoms that make me think there is something wrong. This appointment is just to establish a relationship with the doctor and Ronnie.

Hopefully tomorrow I will have good news to share with everyone. But until then, here's a little bit of good news. During a trip to the pharmacy this past weekend, I needed BandAids. Imagine my surprise when I found that the BandAid box had Braille on it!!! I'm very impressed....

Forced To Leave Home, Part 2

Cheryl from the blog Finding My Way: Journey of an Uppity Intellectual Activist Crip, left the following comment on last Friday's blog post. I thought it important enough to repost here:

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ADAPT had Syracuse/Cornell do a study that found that funds for the Community Choice Act would cost middle class Americans $6.07 in taxes a YEAR to keep people in the community. That's without factoring in the savings from all the institutions that would be forced to close as a result. Then we paid for a Harris Poll where 2/3 of Americans said they would support the bill before they even knew how much it cost. After they found out it, that number went up to 89%. Now what bill has an 89% approval rating? All you have to do is skip 1 trip to Starbucks a year. Here's a link to the fact sheet:

Cost and Benefits of the Community Choice Act

So, what I want to know is where do I send my $6.07
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Watching states balance their budgets by cutting services to people with disabilities is not the only way they are forcing more institutional decisions.
I spoke with a mother of a 15 year old young man who is severely disabled but who wants to stay home with his family. To accomplish that, the family must have the assistance of nurses around the clock. Unfortunately, they live in a smaller city in Virginia, a city not known for available service providers.

This young man is approved for nursing services and for enough hours to provide the assistance the family needs to keep their son home with them. But they can’t find nurses to staff the positions that have been approved. This is yet another example of how people with disabilities are being forced into making a decision to institutionalize.

I believe that our state Medicaid services should be required to maintain an adequate number of providers for the people with disabilities in the state. Whether that means raising salaries and reimbursements rates, or providing additional training, whatever is required to make sure that people have the support they need to stay in the community.

But there’s the rub – I don’t believe our states, or at least my state, wants people to remain in the community. Why else would our budget this year provide funds to build a new institution and not fund more community based waiver slots?

Forced To Leave Home

Born with cerebral palsy, Ms. Hickey, now 67 years old, is confined to a motorized wheelchair. She lives alone and relies on certified nurse's assistants to get her in and out of bed, bathed, clothed and fed.

In December, she received a letter from the South Carolina Department of Special Needs and Disabilities, saying her weekly 50 hours of personal-care help was being cut to 28 hours. That meant Ms. Hickey would get help for two hours in the morning and two hours at night. If she needed to use the bathroom in between, she would sit in a soiled diaper.

Not a day goes by that I don't hear or read about how states are trying to balance their depleted budgets by cutting services to people with disabilities. Lulled into a false sense of budgetary security by the influx of stimulus money, the time to pay the piper is now upon state governments.

People with disabilities are being forced into institutions because home-based services are the first things cut. Where is the Olmstead Decision in all this? Don't our state leaders read the literature that has proven it costs more to keep a person in an institution rather than in their home and their community?

This article from the Wall Street Journal is just one of many more to come, I fear.