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.

Fighter Parents

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.

Update: The last two years

I just realized it’s been two years since I’ve written anything much on this blog… if anybody is still watching– I’m sorry.

When the nightmare that was 4th grade (see that post) finally settled down and J started getting a real education– I felt like I couldn’t let up… like I just couldn’t turn away for a minute. Maybe because I still don’t trust that this school district won’t try to move him into an MD class– or maybe because J needed to prove their repeated insistence that he “couldn’t learn past 2nd grade” so very wrong. Maybe just because it still makes me angry… but, the good news is that he really got taught the academic content standards in both 5th and 6th grades!!

He is getting good grades, learning to talk to girls (J’s personal goal for speech therapy), getting ready to join the swim team in the fall and getting scuba certified this summer– in addition to frontloading social studies (mostly ancient civilizations) and making a documentary about the water quality in NE Ohio.

I don’t know if it’s the sensory deprivation under water or what but, he loves swimming! He’s already done the PADI Discover Scuba class twice and did really well… He researched Cousteau, and Disney Oceans is still in his top 10 (although the animated movie du jour is Monsters Inc.) Maybe I’ll write another post on scuba and autism… but, I make no promises!

J makes movies all the time (last summer’s Humboldt Penguins Documentary was really cool!)– and power points that do things I didn’t know that program can do!– I loves this stuff– and, he’s really good at it. He loves science and wants to learn about ancient civilizations– so, we’ll do MOMA’s Egyptian wing, read some books, watch some movies and do some projects.

We’ve always supported J’s interests, made lots of museum visits and worked to expose him to interesting subjects and places… but over the last two years we’ve been much more focused on helping him create files to put new materials in– giving him a foundation for learning the general education curriculum. Maybe I’ll write more on “frontloading” another day… again, no promises!

It’s going to be a busy– and fun summer! We’ll get to play in water, read good books, go to some neat places… he’ll get to see a ship wreck in lake Erie, enjoy a silent world that doesn’t drive him crazy and we’ll find some time to spend with friends.

Before the accusations that I am a “Tiger Mom” start flying let me tell you– He LOVES this stuff! We firmly believe Temple Grandin’s edict that “we must keep them engaged.” And, we believe in IDEA’s mission statement– everything we do needs to prepare him for “further education, employment and independent living” so, we’re off and running Monday morning.

Perseverance

4th grade was a nightmare! We knew there were issues (seriously, you don’t give report cards to kids with disabilities?! Hellowwww ADA!) but the severity and number of issues didn’t come out until after the school year was over… 4th grade with “General Curriculum” on his IEP means (according to IDEA) that he should have been taught the “same material taught to non-disabled” 4th graders…. not the K-2 pre-reading curriculum that the district gave me as a result of my FERPA (Family Education Rights and Privacy Act) request. Then there was the issue with earplugs, fig-its, the boy who terrorized him, the change of placement without team agreement (or even notification), the humiliation in the gen ed classroom… no wonder he’s been diagnosed with an anxiety disorder!

So… in July (2011) we filled a complaint with the US Department of Education Office of Civil Rights (OCR) and submitted more than 5 inches of doubled sided documentation. In December we received a “letter of findings” that basically told us that we said this and the district said that– OCR just doesn’t know what really happened. Seriously. Did they not look at the documentation? So… in January we sent in our appeal to the Washington, DC office– with the original 5 inches of documentation plus another 2 inches. According to them it’s “impossible” to tell how long this is going to take. (And we are supposed to believe that they are serious about disability law?!– without enforcement there may as well not be a law.)

So… here we are at the end of 5th grade… Jay spent the last school year in full inclusion with an aide and personal FM system used only during lectures. He passed all subjects (even without having been taught any subject in 4th grade) and has increased 3 years’ reading levels. He has friends– REAL FRIENDS who seek him out! He has a crush that seems to be returned… he has made more progress in one year than he did in the previous 4.

This summer he is taking speech, swimming, and cornet. He is doing a research project about penguin behavior with a typical friend– this is part of a bigger– grown up– research project and their documentary at the end of the summer will become part of the zoo’s educational program. We are taking his group of 6 on field trips to the Science Center… one of the girls is setting up a book club that Jay will be part of. He’s working so hard– and having fun!

I am exhausted!

Great works and accomplished not by strength but by perseverance. Samuel Johnson

Political Advocacy: Giving my son a voice

About a year and a half ago my husband went back to school and we found ourselves needing to purchase private insurance.  It never occurred to me that my son who has autism would be denied on that basis– but, he was–by more companies that I can count. I got mad and started the fight for change.

I made phone calls, sent emails, crashed meetings where I knew my elected officials were going to be, wrote letters to the editor, and spoke out whenever I could find someone who would listen. I emailed all my friends and family members asking them to write letters asking for insurance reform… I fought for my kid! 

As proposed reform laws moved to the back burner in my home State, I moved on to advocating on a Federal level. I told my story over and over again. I watched, read and researched. I followed the progress of Healthcare Reform through House and Senate continuing to make calls, send emails asking for a YES vote…

One evening in March  I got a call from Organizing for America asking that my son and I stand with my Congressman as he announced his support of healthcare reform and promised a yes-vote. We were there when our efforts paid off. We were able to thank him in person for his support– for helping our son.

There are lots of things to advocate for– laws, funding; big-ticket, high-profile, high impact needs– and, ones that improve the lives of future generations as well as day to day needs our children have for normalcy– accomodations at the YMCA, IEPs, reasonable volume at the movies… The more we educate our communities and our Nation the lower the stigma and higher the accomodations.

We need to learn how to effectively advocate so that our time and our efforts have maximum effect. Here are a few tips to get you started:

1. Be polite. Your attitude will transfer to the cause you are advocating for. Remember that the person you’re talking to is usually not the person who is going to cast the vote and you want that person to give your cause a favorable slant when speaking with the vote-caster. Practice the Golden Rule.

2. Do your research! Know what you’re talking about before you dial. Back up your claims with statistics– and use them. I’ve always found it helpful to have a cheat-sheet in front of me.

3. Ask questions— How does Senator/Congressman/Mayor/Councilman so-and-so feel about (insert your cause here)? How are they planning to vote? Why or why not? Follow up their comments with your views.

4. Be honest. If you don’t know– say you don’t know and promise to find out– then get back to your public official.  This is actually a good thing because it gives you an excuse to call or write back.

5. Tell your story— it shouldn’t be a play-by-play– keep to the outline version.  Politicians needs examples of real people who benefit from the law being passed– or repealed. They are people like us– parents, business people, community members, vets, customers…

6. Know who you’re talking to. What is their history? Do they have kids? How have they voted on similar issues? Use the similarities between you and them as a hook. If they can relate they are more likely take up your cause.

7. Offer to help. I’ve always believed that if I’m going to ask someone to do something for me, I must be willing to help them get it done– and, support them when they put themselves on the line for us.

8. Be Persistent! Any changes, progress or set-back is a good excuse to make contact again.

9. Double Dip. Do it all– call, fax, write, email, get an appointment, cast your votes on Facebook’s Visible Vote, sign polls, contact organizations associated with your cause (Organizing for America, Autism Votes, etc.)

10. Build relationships. Get to know your official and his/her staff– and, let them get to know you. Volunteer, go to public and private events, send birthday cards– be creative.

Although it varies by person/office– generally speaking, a personal visit has the most weight followed by a snail-mail hand written letter, then phone call, then email or fax. You can– and should– ask the staff member you talk to what works best for them.

To get an appointment all you have to do is ask for one. It’s really pretty easy– call the scheduler in their office and set it up.  You can meet with your elected official at their local office during a home visit– or at their government office. Typically summer time is “downtime” and therefore the best chance to chat. When you do get an appointment– Be respectful of their time— if they spent an hour with each of us they wouldn’t have time to cast votes or see their kids.

Don’t allow yourself to be intimidated. Our elected officials are people like us whose power is that which we gave them. When you think of these people like that, it’s easy to talk to them. 

I sometimes take my son along when I go on visits or attend rallys and, I do believe that he needs to grow up understanding the power of the common man’s voice. He needs to understand the value of his vote. He needs to learn to ask for what he needs. However, parents must weigh privacy against impact and education. Many private citizens have had their lives torn apart by becoming involved. Personally, we haven’t had any negative experiences as a result of our very public involvement and for that I’m thankful– but, it’s important for each person/family to consider this potential downfall.

My Congressman, John Boccieri,  is up for re-election. Our family is volunteering and donating to his re-election campaign. It’s important to us to keep this man who, despite personal threats, voted for our son to get insurance.  It’s important to us to have representation who “gets it”.  Whether we had gone to Washington to stand with him as he made his announcement of support for healthcare reform, we would be supporting our Congressman because thanks to John Boccieri, my son will have insurance on October 1, 2010.

As parents we have a powerful, passionate voice– one that knows the daily struggles, one that knows our children’s needs. Let your voice be heard!

Federal Funding for Autism Research

One in every 110 children has autism. One in 70 boys is affected. There are almost 750,000 children in the United States who test somewhere on the autism spectrum.

In FY 2008, Federal spending on autism research was just $177 Million and is expected to increase to $282 million in FY09 due to $89 million in one-time stimulus funds…   That’s less than $40.00 per person with autism in the United States. 

Federal Funding for Defense Research in FY2009: $6,692 Million

“During his campaign, President Obama committed to $1 billion of annual federal spending on autism by 2012. In October, he identified autism as one of his administration’s top three public health priorities. This new prevalence data must compel Congress to take action to fulfill the President’s promise in the upcoming FY 2011 budget process,” said Mark Roithmayr, President of Autism Speaks.

It’s time to write our elected officials… and hold them to their promise. http://www.usa.gov/Contact/Elected.shtml

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.

New Healthcare Law: GREAT for autism

April is Autism Awareness Month and a time to talk about issues that Americans with autism and their families must face. Awkward social and language skills, sensory disintegration, misunderstandings perpetuated by movies like “Rainman,” parents’ guilt for wanting a cure that would change our children and the stigma of “imperfection” is only part of it– insurance companies discriminate against those with autism in a real and deliberate way.

Healthcare reform is personal for our family because our son has autism.

The Health Care and Education Affordability Reconciliation Act benefits Americans with autism not only by putting an end to “pre-existing conditions” and, in-effect, removing the term from our language but also provides for behavioral health treatments that are proven to have significant benefits for those with autism.

According to Autism Speaks, “…behavioral health treatment is included as part of the essential health benefits package required in certain health plans. Behavioral health treatments were added to ensure that people with autism are provided with insurance coverage of medically necessary, evidence-based behavioral treatments, such as applied behavior analysis (ABA) therapy. The reconciliation bill will require the following health plans to offer at least the essential benefits package: (1) plans offered by state-based exchanges, through which individuals and small businesses can purchase coverage; and (2) plans offered in the individual and small group markets outside the exchange.”

While some say that this law doesn’t go far enough, it goes farther than any law has gone before in ending healthcare discrimination. This benefits not only children with autism but, middle aged men with heart conditions and grandmothers with diabetes.

Over the course of the past few weeks there have been significant threats made against our elected representatives because of their support of healthcare reform. These reprehensible threats have not been limited to adults who are public figures– their children have been threatened! Congressman Boccieri’s family is at risk because he stood up for our children– for the 1 in 70 boys born today with autism who cannot get healthcare insurance.

Now it’s our turn, the millions who benefit from John Boccieri’s personal and political sacrifices, to proudly stand with him because he believes, as we do, that pro-life doesn’t end at birth.

Ten Things Every Child With Autism Wishes You Knew: Part 7; Focus On What I Can Do

As I’ve mentioned before (Six times now) I recently finished reading the book “Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. The full article can be found on-line and the book is available at Amazon.com. Here’s the seventh part from an article by the same name: 

Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.”  Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided.  Look for my strengths and you will find them. There is more than one “right” way to do most things.

I read a great blog this morning–  “Soccer Moms” February 6th on http://asdmommy.wordpress.com/  Check it out. C’s mom puts it so well!  (Thanks, Darcy!)

We need to pick our battles, work on encouraging and building self esteem in our children (be they autistic or not) and strengthen their skills.  Does it really matter if they score a goal? Does it matter if they are exceptional musicians or mathematicians?

What does matter is that our children are confident and complemented. What does matter is that they are loved for being themselves. What does matter is that they try.

John Edwards on Autism

I spent some time looking around John Edwards’ website and in his blog section the mother of an autistic 12 year old (Austin), prouddem316 writes of Mr. Edwards: “He has looked me in the eye and said “things will change for kids like Austin” and I believe him, I do.” http://blog.johnedwards.com/user/prouddem316

I haven’t looked him in the eye. I don’t know whether to believe him or not… a debate about Autism would sure help!

I emailed Edwards’ campaign this morning and so far no form letter– points for him! 🙂 Obama and Clinton both sent form letters referring me to their sites… OK. I don’t expect them to call me but, come ‘on… that didn’t help. I’ll wait to see what becomes of the email to Edwards.