Parent Participation Trumps Deadlines! (Doug C. Vs Hawaii)

5 07 2013

Monumental!!

Doug C. Vs. Hawaii rules (in essence) that the right of the parents to participate in IEP meetings/development is more important than the school’s need to meet the deadline for IEP annual reviews. (Happy Dance!!)

Well worth reading this Wightslaw analysis even if you’re not a geek: http://www.wrightslaw.com/law/art/dougc.hawaii.pwanalysis.htm

The Court explained that procedural violations that “infringe the parents’ opportunity to participate in the IEP formulation process, clearly result in the denial of FAPE” (*FAPE is Free and Appropriate Public Education)

While the case centers around the scheduling of IEP meetings so that parents can participate in the meeting– the ruling is clear that parents have a right to participate in the “formulation process”– which in my interpretation (am not a lawyer– just a geeky mom) also includes the right to help write the document.

Last year my work was taking me out-of-town every week, my son’s intervention specialist (IS) was going through chemo therapy so our schedules just didn’t allow us to work on his IEP together… not malicious, not that either of us was playing games; our schedules just didn’t match up. We got to a week before the IEP annual review was due and we believed we were meeting with his IS to work on the IEP and the school ambushed us– they tried to push through the rough draft we had been working on by email. It was really rough… and we refused to sign it. They threatened to implement without our agreement and we basically dared them to do it. To make a long story short– we found a work-around and bought some time to finish working on the IEP so it all turned out fine. But, thanks to Doug C. Vs. Hawaii this won’t happen again!

Too many people– parents and school staff alike– are under the impression that an IEP “expires”. Let me be clear– Individual Education Programs do NOT expire. Seriously– read the Individuals with Disabilities Education Act (http://idea.ed.gov/).  They do NOT expire!

The law requires that IEPs be reviewed at least once a year and be changed as needed. That’s all. The law doesn’t require a re-write… the program does not expire. So– the annual review is a procedural issue and Doug C. Vs Hawaii says clearly that the rights given by IDEA get priority over proceedural timelines.  

From Wrightslaw analysis:

“The Court discussed the balancing of two options, i.e., including the parent versus meeting the procedural timeline. There are two primary purposes of IDEA. The first is to prepare the child for “further education, employment and independent living.” [See 20 USC § 1400(d)(1)(A)]The second purpose of the law is “to ensure that the rights of children with disabilities and parents of such children are protected.” [See 20 USC § 1400(d)(1)(B)]”

 “When confronted with the situation of complying with one procedural requirement of the IDEA or another, we hold that the agency must make a reasonable determination of which course of action promotes the purposes of the IDEA and is least likely to result in the denial of a FAPE.”

“Under the circumstances of this case, the Department’s decision to prioritize strict deadline compliance over parental participation was clearly not reasonable.”

I am SO excited about this ruling– not only because I feel vindicated– but also because this gives families legal grounds for our objections to being excluded from the IEP process. Granted that generally speaking, parents aren’t the experts in education, in education law or in procedure– but, we are the foremost experts in our own children and have the legal right to have a say in our children’s educational plan.

Thanks Doug C.!

* Pete Wright is a Special Education Attorney. I am not. I encourage you to read this ruling for yourself and visit www.wrightslaw.com — go to one of their trainings… And don’t assume that everything you read on the internet is true! My post is to the best of my knowlege… but, I’m not a lawyer so do your own reading/research.





Fighter Parents

29 06 2013

I read a great blog about how families of special needs people are always in fighting mode:

I think people wonder why special needs parents stay in fighting mode. It’s because if we let our guard down even for a day, we miss something. Sometimes it’s something big. Or something as simple as our family getting to swim together in a community pool with our son safer by use of a floating vest. Our “fighting” isn’t fighting as much as it is just doing what we do. Or doing what we have to do.” http://supportforspecialneeds.com/2013/06/28/why-special-needs-families-stay-in-fight-mode/#comments By Julia Roberts

It got me thinking about the many fights we’ve had since our son’s diagnosis… He doesn’t have a modified curriculum on his IEP! Keep that little bully away from him! Don’t send him home– give him accommodations! You receive Federal funds– you can not exclude him! He’s not going into the multiple disabilities classroom– he’s going into general ed! And the list goes on… some fights I’ve handled well; others like a rabid mama bear. Some fights I’ve won– others have thrown me on my butt in a puddle of tears. But we HAVE to persevere.

I love the Samuel Johnson quote “Great works are performed not by strength but by perseverance.” But, I do believe that sometimes strength is needed… we have to be strong enough to get up in the morning and go head-to-head with people who are afraid of our kids or are too lazy to work toward our high expectations. We have to be strong enough to learn the law and use it. We have to be strong enough to keep on believing that our kids will reach their maximum potential when everybody around us only sees the disability.

Our children need to know that they are “good enough” to do what others get to do– they need to know that we’ll fight for them– that they are worth it! That we don’t give up– we accommodate.

Some of us fighter parents create organizations to include their kids when the mad hits (Ohio Adaptive Sports for example) others hire attorneys and some just pay for the private lessons when their kids are kicked out of group swimming lessons at the Y. (And wait to rub swimming medals in the faces of those who excluded our kids.).

I believe that every generation of fighter parents weakens the walls that our kids have to face. I want to be a fighter parent who helps clear the path so others have lesser fights.





Happy Birthday, Healthcare Reform!

23 03 2011

My amazing boy who has a “pre-existing condition”– autism– has insurance thanks to the hard work, and courage of good people like John Boccieri. I will always be thankful to him, his staff and his family for all they had to put up with because of people who didn’t understand the benefit of passing this into law.  Thank you!

This means more to me then you’ll ever know…





Anything But Typical (Book Review)

8 11 2010
 
“How do you show appreciation? Appreciation is an emotion. It’s a feeling. You can’t draw a picture of it. Why do people want everyone to act just like they do. Act like they do.
And if you don’t — If you don’t, people make the assumption that you do not feel what they feel.
And then they make the assumption– That you must not feel anything at all.”

 Anything But Typical by Nora Raleigh Baskin, a Schneider Family Book Award winner, is wonderful in a confusing sort of way. It’s a story for adolescents written from the perspective of a 12-year-old on the autism spectrum.  It addresses friendship, outbursts, sensory issues, family dynamics and a boy’s first crush.

It deals with bullying.

“…He is laughing more. Louder.
‘You want to know what her name is?’ he is saying.
…My hair hurts. My chest is tight.
‘I bet her name is Retardo Girl,’ the boy says.
No, I am thinking. Her name can’t be Retardo Girl.
Can it?
‘And I bet she rides the little bus to school’
And then I figure it out. He is just being mean. When a dog gets mean and bites a person, it’s the law that they have to put that dog to sleep. This boy is being mean. He is lying. He doesn’t really know PhoenixBird. I have nothing to worry about. For some reason my head is still shaking.
But I can breathe.”

 This isn’t a pity party or some veiled attempt to explain to neurotypicals (NTs) what it’s like to have autism– although I think it does.

“My head exploded.
There was no way to stop all the molecules that started penetrating my skin.
My hands flew off my body.
My body flew into a million little pieces.
I could smell the fresh coffee that Aunt Carol and my mother had put up for desert as we hurried out the front door. I could smell the pastries she would have put out, and I wanted one.”

Anything But Typical is a story in its own right whose main character is an individual with his own history, his own likes and dislikes, his own wants, tastes and fears. 

It’s given me some insight into my 10-year-old and cautioned me about making emotional demands. I wouldn’t say that Anything But Typical is a must-read– but, it’s a good read that made me think.






Yet Another Follow-Up on Daytrana

4 11 2010

J has been on the Daytrana patch for about 3 years now… we put it on before he wakes up and take it off as soon as homework is done in the evening. We’ve gone up on the dosage and gone back down and generally speaking it’s been good.

Lately, however, we’ve noticed that there is a bell curve on the effectiveness of Daytrana during the day.

  • 6:30 Patch goes on
  • 7:15 Rise and Shine!
  • 8:15 bus comes– pretty smooth ride to school
  • 9:00 all hell breaks loose
  • noon– zombie time to 2:30 ish
  • 2:30 very productive time of day– good conversations, descent focus
  • 4:00 home from school and homework– very smooth
  • 5:00 patch off– play time (usually computer, editing)
  • 7:00 my son comes back to life (hungry, funny kid!)
  • 10:00 bedtime

Not sure if there is a moral to this story but, I talked to his teacher and this is an accurate portrait of his day… so, I’m going to talk to J’s doctor and see about switching meds at Christmas Break so that if it doesn’t go well, we can go back to the tried and true-ish when school starts back up.

By the way– we have recently figured out that Band Aid brand blue no hurt antiseptic wash works great on the red-sore icky spot the patch’s adhesive leaves behind… Just thought you’d want to know.





What the GOP thinks about Autism

24 09 2010

The Republicans think my son is a wrecked car with “autism”

Mike Huckabee:

http://www.youtube.com/watch?v=GoCnxnStMpU

Sharron Angle:

http://www.youtube.com/watch?v=9M46hn8qtJI

Why in the world would any family or friend (teacher, doctor, therapist) of a child with autism vote for the Tea- GOP?!