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

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.

It’s Time to Enforce IDEA

If you’re anything like me, you’re tired of fighting for your child’s rights to be enforced… Year after year fighting for the law to be followed wears on the heartiest… on the stubbornest… on the parents of children who need special education services. We get tired of having to educate educators about the legal definitions of terms like “general curriculum”, “least restrictive environment”, “accommodations”, “modifications”… and the list goes on.

I think what irritates me most is that there is a pretty good law out there already– The Individuals with Disabilties Education Act– but it’s not being enforced.

Please sign this petition: https://petitions.whitehouse.gov/petition/enforce-individuals-disabilities-education-act/shvRJcx2 asking that the Federal Government start taking this law seriously and start enforcing IDEA.

If we can get 25,000 signatures by August 10, we will get a response from the White House. That’s how the “We The People” petitions work. Will you help me get the attention of the President on this very important issue? Please forward this link, post it to Facebook and Tweet at will– https://petitions.whitehouse.gov/petition/enforce-individuals-disabilities-education-act/shvRJcx2

Our children deserve a chance to pursue further education, employment and independence.

Thank you!

What’s Wrong with this IDEA?

Special Education Law (IDEA) has kind of become my hobby. Sure it’s related to my son and my work… but it’s really interesting. As a mom and an advocate I think it’s a pretty good law. In both capacities there are a few things I’d change but over all it’s a good law. I’d love for the law to spellout what they’ve had to explain in commentary (http://www.wrightslaw.com/idea/commentary.htm) but it works. Well… it would work IF schools spent a fraction of the time getting to know their rights and responsibilities as the mom brigade has…

In my humble (but pretty experienced) opinion the biggest hurdles to our children with special education needs having their educational needs met are:

1. The people…. General Education Teachers who don’t think they have any responsibilities under IDEA… or don’t want to fulfil their responsibilities… or just plain don’t understand their responsibilities (which is the fault of those to taught them and those who are responsible for helping them with professional development). They know they are supposed to show up and sign IEPs… but they either don’t know or don’t care that it’s a legal document and their signature makes them legaly responsible for their part of the program. Special Education professionals— who don’t know the legal definitions of the buzz words they use… are treated as the “red-headed step-child” in their schools… need more funding for their students and can’t compete against the football program…. the list goes on. I do not believe that people go into special education as a profession without caring about our kids (some exceptions of course) and then they get beaten down. School Administrators— who see high expenditures with statistically minimal results… who are too arrogant to admit when they make “mistakes” and can’t make it right because that would mean admission.They fail at educating staff on special education law– fail to supervise special education programs– circle the wagons when anything goes wrong… fail to establish a culture that values special education, students in special education and families who live with special education needs. Parents— yes… we really are part of the problem. We are the foremost experts on our children– but,  (generally speaking) we are not experts in education. (Generally speaking) We are intimidated by professionals. (Generally speaking) We want our children to have it all– even what they don’t need because who knows– that might be the magic bullet. Many of us are angry and have blown a gasket at least once in the years of dealing with special education. (Generally speaking) We are excluded from the process. (Generally speaking) We are angry. (Generally speaking) We are tired.

2. Enforcement: The federal government went to all the trouble of creating a good law but appear to be careless about enforcement… it can take years to work through the process… Local and State cronyism makes it difficult for parents to fight for their child’s rights to have their “unique needs” met so that they can go on to “future education and independent living”. Without enforcement, this good law is impotent.

Of course funding is also an issue– but shouldn’t be because the law doesn’t let funding be a consideration in determining the child’s needs. When you get to nuts and bolts of HOW the needs will be met– that’s when you can get creative. There are many ways to skin a cat (my son is working on memorizing euphemisms so forgive me…) so, working together– so long as both parties have good faith and the best for the child at heart– is best for the child. Most of us understand a tight budget– been there or are there– so we can be reasonable. If districts would treat parents as true members of the IEP team and parents would set aside the anger over past wrong doings, creativity can lead to reduced cost– while avoiding reduced results. We must focus on the results– not the “thing”…  But, we can’t waste time on that which does not work.

There are many other obstacles to ensuring that our children’s needs are met and some we can overcome. There is already a pretty good law…

Anything But Typical (Book Review)

 

“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.

Social Advocacy: Giving my son a voice

Parents of children with exceptionalities (aka disabilities) see things that parents of the “normal” kids don’t notice –the volume of a movie, the ceiling fan, the florescent light that strobes,  the teacher who only explains verbally… We can complain– or we can educate.

Business owners, neighbors, family, friends, teachers don’t mean any harm (generally speaking) — they just don’t know any better. It’s important for us to educate these folks so that change happens.

I never complain without offering to help solve the problem– If I offer to train their staff at no cost and they don’t take me up on it they don’t have an excuse… and I have more leverage if I need to lodge another complaint.

There is no silver bullet… and unfortunately, education hasn’t always worked for me… I confess that I have filled complaints with the ADA when education has failed but it’s always been last resort.

Remember to be polite, know your facts, ask questions, be persistent and make change!

Wearing Blue for World Autism Awareness Day

Yesterday was World Autism Awareness Day (WAAD) as declared by the United Nations.

While watching the evening news, I noticed that MSNBC’s Chris Mathews was wearing an Autism Speaks puzzle piece so, I started bouncing around to see if any of the other networks were honoring this day… CNN’s John King was wearing blue but, his guest, Governor Strickland of Ohio was in red… On Fox Sheppard was in pink.

My family all wore blue, my Facebook friends wore blue and  the sky was even blue… but, the press (with the notable exception of Chris Mathews) didn’t acknowledge WAAD. And, I couldn’t find a single special on the topic.

It’s sad that this epidemic is a footnote– or rare news story– when 1 in 70 boys born today– 1 in 110 children– have autism. Surely they don’t think it’ll just go away if they ignore it…

Remember Swine Flu? Bird Flu? Just plain old regular flu? The numbers weren’t anywhere as high as autism’s and they led the news… funding for research and development of vaccines was astronomical but, the Epidemic that is Autism is relegated to a single line in the news casts if mentioned at all.

Don’t get me wrong– I appreciate any positive mention of accomplishment or discovery but, I wish that the attention given to comparatively minor outbreaks would be given to this disorder– and the boy who has autism that is dancing in my kitchen as I write.

When the 1 in 110 is enters the workforce or applies for government assistance they will notice… it will be the lead story… I hope it’s not too late for this generation of children with autism.

I challenge you to write a letter to the editor of your local paper, post a blog, write your elected officials and/or tell your Facebook friends what autism is, how it impacts those you love. Let’s talk about autism– let’s demand the attention this epidemic deserves!

The inclusion of behavioral health services and ending of  “pre-existing conditions” in the new Healthcare law are a really good start– and very appreciated by my family.

 As our Country moves on to Education reform let us advocate for increased and improved education for children with autism. Let’s insist that colleges  provide supports needed for those with autism to succeed. We, the people, the grassroots advocates for our children–can make a difference.

Interviewing a new School for our son with Autism

I have scoured the Internet and can’t find a set of questions to ask or how to evaluate a good school for a child with Autism so, I’m putting one together.

We are considering a move. Not because we aren’t thrilled with the school J is in now but for a new job.  There are a couple of options and the school will be the deciding factor. So, how do we figure out which option has the best school? What do we ask? What do the school “report cards” really mean?

I’m beginning the process and hope to have a good set of questions together pretty soon — in the next couple of weeks– and will share the whole thing with you then. In the meantime this is what my mother in law who is a retired Elementary teacher and Principal had to say:

I called my friend, Barbara.  She was a supervisor for the Special Education programs in VCSC.  She is someone I trust to give me the correct information.  While she is retired now, she still works with SMWC student teachers in the schools.

These are some of the questions and suggestions she made:

1. What kind of special education services are available?
2. How are categorical labels identified in your schools systems and by your state?
3. Do you have staff that can provide Speech, OT, and PT services that provide functional life skills and direction?
4. Is Integrated Therapy done with speech in the classroom as a whole, or in a small group, or in a social group for learning pragmatic speaking skills?
5. How is staff development done in accordance with IDEA?  Do other staff members understand autism and how to integrate such a student into the general education classroom?

 

Then she also suggested these:

1. Push to have a multi-disciplinary psychological evaluation that includes speech and OT and or PT requirements.  Usually these are done every three years but you may also request one.  (My thinking is that he is due for a re-evaluation this year if the only one that has been done was in preschool.)
2. Have a very clear I.E.P.to take with you!!  For example it should say that Jay will write his spelling words on the computer maybe 3 times rather than 10.  Write in the IEP that he needs extra time to process information if that is a requirement, etc. Make sure the I.E.P. is very specific to meet his needs.  (I will re-read his IEP to see if I think it needs to be tweaked.)
3. She said to go to this website: autism speaks   Barb wasn’t sure if it was .com or .net or .org but type that into your Goggle and it should come up.
4. Barb also suggested a fiction book written by an English man who worked with autistic child who wanted to write a book.  She says it gives great insight into how an autistic person “sees” things.  It is by Mark Haddon and is called the curious incident of the dog in the nighttime.  The title is written in lower case.
5. Barb also quoted another autistic author as saying, “I can look you in the face or I can listen to your words but I cannot do both.”  Barb says that facial features are difficult for the autistic person to understand where they understand perfectly that a dog wagging its tail means it is happy or a bark may mean let me outside because facial expressions do not have to be interpreted. 

 (I started reading the curious incident of the dog in the nightime and couldn’t get through it… when the kid lands in jail and actually likes the quite, stark setting I walked away from it… My sister said it was great. It’s written by an autistic young man so it’s through the eyes of autism.)

If you have tips or questions that should be asked of educators or therapists in order to find the best please comment.  I need help! Thanks!