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Special Needs Kids: The New Squeaky Wheel

Squeaky_wheelNever before have children with special needs been in the political spotlight to this degree. 

Governor Sarah Palin spoke in Pittsburgh today about the McCain administration's plans to assist families with special needs children. You can read her remarks HERE. If you attended the event please tell us about it in the comments section.  Click HERE for the Yahoo news story on the event.

On October 21, Kareem Dale, the Obama campaigns National Disability Vote Director wrote a blog entry on why Obama is the best candidate for people with disabilities. You can read that entry HERE.  The Obama campaign discusses disabilities HERE on its website.

The countdown to the election is on - it's encouraging to know that our kids are an important part of the political debate. It's good to be a squeaky wheel.

Comments

Mike in Brooklyn

Sarah Palin and special needs.
Talks the talk but won't walk the walk.
Against the Colorado initiative.

http://www.guardian.co.uk/world/uselectionroadtrip/2008/oct/27/sarah-palin-pro-life-contradiction

Monica

Kelli Ann, sorry you feel this was a personal attack. It was not directed at you, or any one person. Too often, here, and on other autism/ disability sites, I hear the same rhetoric about Palin being a "friend and an advocate".

I am simply making a point. Not all moms are good moms. Not all "special needs moms" are advocates.

That's just life.

I would not hold my breath waiting for Palin to become my daughter's advocate.

jennifer

I have to tell you that as a Canadian I can't even understand why anyone would support the Reupublican party (unless they were rich). McCain keeps saying that the Democratic approach to health care is "socialist" but I am proud to just call it "decent". In Britain and Canada if people get sick they are looked after (and sooner or later, most people are in the position of having some kind of unforseen illness strike them or a family member). Sure, the government uses more tax money to pay for this but I think it breeds a feeling of comfort and generosity, in the same way that I think the way you do health care there (U.S.) breeds a meanness and seems inhumane. When people are not looked after it's just not good for a country's soul...just my opinion.

Kelli Ann Davis

"Why can't people get past the fact that she has a child with special needs!? Does that mean anything?"

"Why is it beyond your imagination that just because a person has a child with special needs means they give a damn?"

Monica:

Why do you insist on talking down to others who may not agree with your viewpoint??

For the record, there is nothing that *I* need to *get past* in regards to Sarah Palin having a child with special needs. I view her as another mother who is dealing with much of the same heartache and pain that many of us face and I believe she is in a unique position to help us. Pretty simple really.

"She has a pregnant teen, and left Trig when he was three days old to return to work. I can't expect that she would have the passion to advocate for a child she was in such a hurry to leave."

Really, where do you get off being so damn judgmental? She is the Governor of Alaska. What did you expect her to do?? Take 3 months of maternity leave??

Bottom Line: I'm all for debating the *merits* of the candidates and their positions. What I have absolutely no patience or stomach for is personal attacks which are baseless, irrelevant and disrespectful.

Kathy

I just want to make a quick response to Monica's comments. You don't have to be an " Elitist" to start a "Special Needs Trust" for your disabled child. I'm not rich, and not an elitist and we have just completed ours. All you need is an Attorney with experience in writing these trusts and life insurance. Your insurance is what funds the trust in order to take care of your child when you pass away. We haven't put a dime into it. The only fee was paying for the Attorney.
And a quick comment to Tim, historically Republicans govern more according to the constitution which states a " Government for the people and by the people". Democrats and especially now want to tax us more, take our money and do with it as they see fit. We work very hard as middle class and would like to spend our money as we wish and not give it away because Obama wants to spread it around. I'm sorry I have to disagree that socialism does no favors to the poor and disadvantaged. It only takes away more and more of our rights and freedoms and makes them even more dependent on the government.

YG

I totally agree with Deborah.

Val from Ohio

The phrase that disturbs me in Obama's policy statement is this description of his past work:
"First, there is his record: As an Illinois state senator Barack Obama sponsored legislation that created an autism spectrum diagnosis program, designed to implement evidence-based best practices. "

"Evidence-based" sounds an awful lot to me like Pharma-speak for "the-consensus-is-its-not-caused-by-vaccines". Early diagnosis is all well and good, but what we need is a sea change in treatment philosophy. Our kids NEED medical treatment, as much as, if not more than, OT PT ABA and speech therapy.

I'll go with McCain. At least he has publicly stated his belief that mercury is a cause. That's more than most of my own relatives will acknowledge, much less neighbors and friends.

Barbie Hines

So Palin-McCain (let's get the real order straight here!) will help with the school systems and early intervention...again I say, what will they do for my son???? It would take a century to turn around the school systems available to my child...they cannot accomplish this in time to help my child...and again, Palin hasn't a clue what having a special needs child is about...

Isn't early intervention already addressed? Come on...that was hot 4 years ago...

What will they do to help with my therapy bills? What will they do to help with my son's medical treatments? Nothing different.

Deborah

Ron Paul is one of the few honest politicians in Washington. Until he came on the scene I thought honest+politician was an oxymoron.

McCain/Palin, Obama/Biden will say ANYTHING to get themselves in the Oval office.They are all liars and corrupt.

I will go to the polls and as some say "throw away my vote". I WILL VOTE FOR RON PAUL!

He is the only qualified candidate to deal with ALL the issues.

Wake up people and stop being SHEEP. Use your brains, do your own research. Stop relying on a media system that is spoon fed the news that powers-that-be want us to know. God gave us all brains. It's time we all started to use that gift!!

VOTE RON PAUL!! :)

Tanners Dad

Open Letter to Autism Speaks... Time to unite...Tighten the belt...Time for the real fight....Are you for our children or against them?

I am Squeaking...

Dear Autism Speaks,
The parents are fighting for our children. Autism speaks is fighting a good fight of awareness. As we become the squeaky wheel and the focus of everyones attention we must find common ground and unite to complete our mission. I feel we must unite. A divided front accross so many different organizations is only hurting our children. It is time for us to find a middle ground. It is time for us to demand the research that was requested more than a decade a go. It is time to see results. There are researchers who have been working with grant money for more than 20 years on Autism research and have produced nothing. Yet they are now getting grants in the 10, 20 and 30 million dollar range. It is time to ask for performance. It is time to ask the question... What happens in 10 years when all these children become adults?

It is time to tighten the belt. If the AIG incidents have taught us anything it should be this. Tighten the belts. Never again should planes show up on annual reports. Never again should black ties be required. Every penny spent on luncheons, kick offs, give aways, gift baskets, and even rent. The Parents are going bankrupt. Do you see that? It is time to tighten the belt.

The Autism society is quickly coming a society of have and have nots. Some parents have the chance at ABA therapy. Some parents do not. Some parents have therapies paid for by inurance. Some do not. Some parents are advocates for a safer vaccine schedule and safer vaccines. Autism Speaks seems to advocate for the government (All vaccines on time no exception). Some groups have black tie affairs. Some groups sit at home and clean up feces.

Even Bob Wright said in October ...

...The last vaccine Christian had before he regressed was MMR - that’s why my daughter concentrates on that. I don’t know whether his autism is linked: it was certainly coincidental, what we don’t know is if it was causal. Nor do we know whether the thimerosal (the mercury-based preservative used in vaccines) is a factor, although mercury is clearly poisonous. Governments want to run from that issue but they should become more aggressively involved. They have to follow children through to see if there are any effects.

It is time to choose sides. It is time to choose our children. The Government has more than enough resource to defend their never ending policy of mandating more and more vaccines. Do you speak for Autism or do you speak for the pharmaceutical companies?

Are you for our children or against them?

http://www.causecast.org/member/tanners-dad

Freedom Supporter

WHO IS RON PAUL?

"Insanity is doing the same thing over and over again and expecting different results." - Einstein

Voting for McCain or Obama is missing the larger point. If you take a step back and look at the situation in a larger scope, the two parties are nearly the same.

Both parties will promise anything to get elected. And you guys are parsing their words as the candidates straddle a see-saw, careful not to offend dueling sides.

Remember that government regulation, in the form of unconstitutional corrupt albatross agencies, such as the CDC and NIH, provide the regulatory platform for vaccine makers to manipulate and game the system. Without the regulation and government largesse, individuals and health-care institutions could make the choices for themselves, and vaccine scandals would affect consumer choice, and would have an actual impact on those responsible.

Vote for the guy who promises nothing. A true libertarian/constitutionalist, Ron Paul will not promote vaccine makers with corrupt regulation in the form of albatross government agencies. And he will never make vaccination mandatory - it is unconstitutional as a violation of individual liberty.

RON PAUL ON VACCINES: http://www.youtube.com/watch?v=f74xvtRijMc

Most importantly, remember the ONE TRUTH OF GOVERNMENT that history teaches us: there will never be, and has never been, an expansion of government that does not hurt the exact people in which it aims to help. There has never been anything as damaging as good intentions.

Vote Ron Paul (or Ron Paul endorsed candidate Chuck Baldwin).
http://www.baldwin08.com/
(Don't worry - this election is not close, your vote will not decide the election - but it CAN boost the individual liberty and constitutionalist movement)

Other Ron Paul Candidates:
BJ Lawson, House NC-4: http://www.lawsonforcongress.com/
David Krikorian, House OH-2:
http://www.krikorianforcongress.com/

Ron Paul Revolution:
http://www.ronpaul.com/

monica

Why can't people get past the fact that she has a child with special needs!? Does that mean anything?

Do parents who let the tv and computers raise their kids exist?

Why is it beyond your imagination that just because a person has a child with special needs means they give a damn?

Don't assume that just because someone has a child with special needs means that they will advocate for them. There are parents like the ones of kids at Judge Rotenberg, and all the kids who get shipped off to hospitals, and resident programs and forgotten. Those parents have children with special needs, too.

Look past that $150k make-over and the Tina Fey glasses.

She has a pregnant teen, and left Trig when he was three days old to return to work. I can't expect that she would have the passion to advocate for a child she was in such a hurry to leave.


Can we really count on her to push for the right research? Seriously, before the fruit fly blunder tonight, I thought she was atleast an intelligent woman. Now, it's just over.


I think us in the autism community have learned, check your facts before you open your mouth. We shouldn't expect the same from our leader, "friend, and advocate"?

Lee

Political promises? Yes, you're right. Most politicians give them, and you should take them with a grain of salt.

However, ever since my son was diagnosed with autism 3 years ago, I have always said that it would take someone like the President to have a child with autism to understand what it is like. My doctor told me, "There's nothing you can do, just take him home and love him." I never felt so alone and filled with despair in all of my life. Luckily, that didn't last but a few weeks. Then, I got angry. Then, determined to prove him wrong. I've done my research, implemented supplements, diets, etc. on my own. I have still yet to meet a doctor who even KNOWS what the GFCF diet is. They've never heard of it... And don't even get me started on the school systems... Looking at the funding for the NIH, knowing the vaccines are the cause... there's little parents can do, but network with each other. Until someone, somewhere hears us. I always felt we needed someone on the inside.

Here, we ARE GIVEN someone like that. We are given a MOTHER as potential vice president. Who knows better than a parent? No one. Obama can talk about his "friend" all he wants... Like everything else with him, I take it as an empty promise - that belongs in the wastewater dump like the previous poster said.

McCain has joined us with our tin foil hats and openly said he believes there is a link to vaccines. Palin is the mother and aunt to special needs children. Cindy McCain was a special needs teacher. This is a trifecta to me. They are the answer to our prayers.

Obama has a letter his friend wrote.

Let's not forget we just spent $700 billion on the bailout. No one is going to be able to fultill all of their promises. They will have to pick and choose selectively. I ask you, which candidate has selected advocating for special needs children as one of their main platforms?

Sue M.

"We should be electing RON PAUL for president! Not these fake knuckleheads who will say anything to get our vote. The election day will be a sad day for America. It will be kind of like voting for same person who on one side is wearing a blue shirt and the other wearing a red shirt. I apologize if I have offended anyone".

Offended? Nope, not me... I'm cheering you on :)

There's no real difference between these two candidates. A vote for one is a vote for the other. Same. Same. Same.

Remember in all those Presidential debates when Ron Paul would be laughed at for all his warnings about our troubled economic future... It's not looking too funny anymore!


momof4

Have you all done some research on Gov.Palin comments on Fruit Fly research and wasted $$ in France???
....wow, maybe her speech writers didn't clearly research it...there's a link to the studies done w/fruit flies to AUTISM....HELLO Gov.Palin you haven't SOLD me yet on anything you've said re: my child and special needs...

http://thinkprogress.org/2008/10/24/palin-fruit-flies/

Matt Morrison

Here's a shocker.

http://thinkprogress.org/2008/10/24/palin-fruit-flies/

Today, as she was saying that a McCain administration would - despite their promises to freeze all non-military federal spending - find the money to increase money for special needs children by cutting needless programs such as "things like fruit fly research in Paris, France."

Two problems. First, the research in question is in that well-known anti-American state of North Carolina. Second, it was actually this exact research has "shown that a protein called neurexin is required for..nerve cell connections to form and function correctly" and "has also been used for other autism research and “revolutionize[d]” the study of birth defects".

The honest truth: Palin has NO idea what she is talking about, even ignoring how questionable it is to freeze the entire budget except for military spending and the earmarks in question not being anywhere NEAR enough to cover the spending that Palin is proposing.

Monica

I agree with Tim, we cannot fall for anyone simply because they are making us empty promises.

I am basing my vote on the actions the two Senators have thus far taken. Obama with his support of the Community Choice Act, and the Expanding the Promise to Individuals with Autism Act has my vote.

Obama also introduced 2 items of legislation to ban mercury.

McCain has done nothing!

All I got out of today's speech, that God-forbid Obama loses, we can hold Palin accountable for her promises.

I have taken some quotes from today's speech, and added my comments.

“Under reforms that I will lead as vice president, the parents and caretakers of children with physical or mental disabilities will be able to send that boy or girl to the school of their choice -- public or private.”

-What about developmental disabilities, such as autism and Down’s Syndrome? Does she really know so little about her own son and nephew that she does not realize these are not mental disabilities?
__________________________________________________________________________________
“Some states have begun to apply this principle already, as in Florida's McKay Scholarship program. That program allows for choices and a quality of education that should be available to parents in every state, for every child with special needs.
Like John McCain, I am a believer in providing more school choice for families. The responsibility for the welfare of children rests ultimately with mothers and fathers, and the power to choose should be theirs as well.”

Sure, we have the McKay scholarship here in Florida for autistic children, but we have no choices! Good luck finding a school to use it in! There is ONE for all of Tampa Bay! http://faceprogram.org/
I can’t drive an hour each way every day to ensure Jade has an education! We don’t need more “school choice”, we need more funding, in our public schools! Besides, why should my daughter have to be shipped off to a special school, and be segregated from society?
_____________________________________________________________________________________
“In a McCain-Palin administration, we will also fully fund the Individuals with Disabilities Education Act.”

Won’t we have to raise taxes tremendously to make this happen? We cannot rely on what McCain said during the last debate, in regards to education-
• “But, again, spending more money isn't always the answer”
• “Let's reform it. Let's reform it and fund it.”
• “And I will support those reforms, and I will fund the ones that are reformed. But I'm not going to continue to throw money at a problem. “

According to McCain, we will not see any increased funding. That is like buying groceries for 4, and expecting to feed 100. Funding increases to special education programs have in no way reflected the enormous increase of children with autism in the US. In 1990, one out of every 10,000 children had autism. Today 1 in every 150 children in the US has an autism spectrum disorder.

However, if Palin is in fact correct, we will see billions being poured into the schools, and we will all be taxed for that, even if you make less than $250k a year. Fully funding idea would be an enormous feat, one I don’t feel we can accomplish considering the state of our economy, and spending in Iraq. There is absolutely no way it can be fully funded, and delivered to each student as the law is written. Nice thought, though…
_____________________________________________________________________________
“This will require reform by the states as well. Just as the federal government expects proven results in the progress of other students, we must require results as well in the achievements of students with disabilities”

How can you mandate a state to provide something, if they do not have the resources to fund it? It’s like “no child left behind” beautifully written, horribly underfunded. A mandate cannot be written, and expected to follow, unless there is a plan to fund it.
This is the case with early intervention, or IDEA Part-C in Florida for children birth to age 3. Early Steps is federally mandated to provide ABA to children with autism, however, it cannot, as it does not have adequate funding. This is also the case with MedWaiver, which is supposed to provide ABA therapy to children age 3+, yet there is now a 15 yr waiting list for services.
_____________________________________________________________________________________
“As families across America know, the care of special-needs children requires long-term planning, and especially financial planning. A common practice among these families is to establish financial trusts. These are known as special needs trusts, covering years of medical and other costs, and for parents they bring invaluable comfort.
Understandably, then, many families with special-needs children or dependent adults are concerned that our opponent in this election plans to raise taxes on precisely those kinds of financial arrangements. They fear that Senator Obama's tax increase will have serious and harmful consequences -- and they are right. The burden that his plan would impose upon these families is just one more example of how many plans can be disrupted, how many futures can be placed at risk, and how many people can suffer when the power to tax is misused.”

This is how simply out of touch this woman is.

TRUST FUND! I wish we simply had enough money after paying for all of Jade’s biomedical bills to provide ABA therapy for her! Many parents don’t have trust funds! They have to rely on failing programs such as MedWaiver, and hopes that programs such as the Community Choice Act will get passed. An Act Obama has sponsored, yet McCain has called too costly, and will not sponsor.

I don’t know of a SINGLE parent of a child with special needs that has enough money to start a trust fund! We are too busy paying through the nose trying to help our kids and survive in today’s economy!

Can I say ELITIST!?!?!?!

It’s easy to set up a trust fund when you make over $200k a yr, have excellent insurance that covers your child’s therapy, and you don’t have to pay for DAN or ABA out of pocket!

Tim Kasemodel

uKathy - you say:

"Her and McCain want to give us as parents the freedom's and choices to make our own decisions about schools, healthcare, and vaccines."


I respect your opinion and your political choices. But, as far as political promises go, I have a great picture of the back end of a truck hauling septic system waste with a sign saying "Warning - political promises inside" or something to that effect.

I remember our last political promise that someone would support a ban on mercury. seems like it went to the wastewater treatment plant with that truck.

I think we all need to remind ourselves that both parties (all parties for that matter) will say WHATEVER IT IS YOU WANT TO HEAR - RIGHT NOW.

Getting back to Kathy's comment, I think what Palin means is the parents in each state, political district or SCHOOL DISTRICT will be able to choose for themselves WHAT THEY CAN AFFORD.

You need to read this as - sure, we give control to the local governement and that is great, but what if you live in a wealthy district vs. a poor district? Wealthy state vs poor state? Do you think, as a PARENT, you will have the FULL control to make the decisions regarding "schools, healthcare, and vaccines"??? I think what she means is the "economic" choice.

I think the conservative view will be if you "have", you will have. If you "have not" well, you are just s#@t out of luck I guess. If you are on a computor reading this than I would guess you are a luckier than those "have nots" who we all should be supporting - the poor who were unfortunate enough to get "Free" vaccines, who are under the radar because they certainly do not have the luxury of the time and/or money to pay for a computor or internet access it takes to post to AOA.

I grew up in a "have not" place. I do not care who anyone votes for, as long as it is based on more than promises.

They belong at the wastewater treatment plant.

Tim Kasemodel

Elucidatus

We should be electing RON PAUL for president! Not these fake knuckleheads who will say anything to get our vote. The election day will be a sad day for America. It will be kind of like voting for same person who on one side is wearing a blue shirt and the other wearing a red shirt. I apologize if I have offended anyone. I would be lying to myself if I said it any other way. For those of you who know me just laugh it off.

Pamela

Here's the video link to Palin's speech

http://www.johnmccain.com/informing/news/Speeches/3d5fc0cf-8229-490f-879b-91f6f4bb9eb2.htm

Kathy

Gov. Palin is about as real and sincere a person and politician as you can get. Being in attendance this morning and hearing her remarks first hand, and seeing the deep love she has for her son and how she speaks with such affection for her autistic nephew and all special needs kids really just gives me so much hope.
Anyone that cannot see that, isn't looking hard enough. Her and McCain want to give us as parents the freedom's and choices to make our own decisions about schools, healthcare, and vaccines. If we had those choices early in the 90's when Clinton was in office my child probably wouldn't have autism. It was during the Clinton years that all these additional vaccines with mercury were mandated for our kids.
It was Ron Paul that wrote the Healthcare Freedom Bill that will allow us all to keep purchasing supplements and vitamins as we wish without Govt. regulations or the Pharmaceutical companies taking over for profit and Ron Paul is a Republican.
Our freedom's are in jeopardy here if anyone thinks that more, bigger Government is the answer then maybe you should think again.......

Dadvocate

Wow, another whopper from Sarah. Obama is not going to tax special needs trusts. They are not taxable and, as we all know, are designed to shield assets so individuals can qualify for the very federal programs a Palin/McCain Administration would slash. Either she has no clue what they are or is being disingenuous. Her plan copies Obama's and fully funds IDEA. OK, so far so good. Uh oh. Here comes the school voucher pitch!


Maintaining SSI? Community Choice Act? CLASS Act? Disability Savings Accounts? Nuh-unh.

Angela Warner

Prevention? Yes that is part of that and McCain has already made a statement regarding finding the cause.

Ya know what I'd like to see??? A bit of balance here. No matter what McCain says or what Palin says... well it seems it's never enough.

My mind is pretty much made up at this point. We all know Obama is not for selective vaccination. This is where I'd like to see some balance (and this is most certainly not AoA's fault - there is just nothing there to my knowledge)

McCain has made statements.
Palin has made statements.
Obama has made statements.

What the hell has Biden said? Not a word to my knowledge. And not to mention the fact that Obama has said nothing about finding the cause - unless I missed something. I know he has certainly never mentioned vaccines as McCain has...

Monica

Thank you for having the links available to both campaigns position on this subject. After reading the speech by Gov. Palin and watching the video viewpoint of Sen. Obama I feel there is a clear difference between the two. As a recently bankrupt parent of a child with Autism, I can listen to both sides and judge for myself who really understands the issues facing persons with special needs. Gov. Palin spoke of specifics that have plagued us since our son first began this battle. Specifics that, in our experience, need to be addressed, fixed and fast. Sen. Obama just did not say anything that made me feel he understands the subject at hand and what needs to be done. He spoke in very general terms, using words and phrases we have all heard for generations. I tried to find inspiration or hope for my child in what he was saying but I could not.

Prevention?

"But it would make a lot more sense for these centers to focus as well on infants and toddlers. ...... Families need to know what treatments are most effective, and where they are available, what costs they will face, and where aid can be found, and where they can turn for the advice and support of others in their situation.......there's no substitute for the friendship of those who have been where we are now."

I don't see anything about prevention. Isn't prevention the *main* reason we are here?

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