Boy, it's almost like Sarah Palin read my post yesterday. I wrote about her opportunity to be an extraordinary advocate for families of children with special needs, and during her speech last night she looked right in the camera and said:
To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters.Maybe it's heartfelt, maybe it's political posturing, maybe it's a little of both, but on some level, I don't care: Having families of children with special needs mentioned with special emphasis in a highly anticipated speech watched by tens of millions feels like a little bit of a victory right there. Someone has found us worthy of rhetoric.
I pledge to you that if we are elected, you will have a friend and advocate in the White House.
Palin's sister Heather mentioned on CNN that she, too, has a son with special needs. Add to that the fact that McCain and his wife adopted a child with a cleft palate, and I'm loving the special-needs symbolism of this ticket, anyway. (Whether the fact that Cindy McCain was a special education teacher is a plus or a minus depends, I suppose, on how I feel about my kids' teachers at the moment.)
Symbolism's nice, but as we all know, elections are about more than symbolism and feel-good rhetoric: They're about "What are you going to do for me?"
So let's play a little game of "What If." What if we had political leaders who were truly interested in being our advocates? What would you like to see them do in the area of helping families of children with special needs? Whether you're Democrat or Republican, in the U.S. or around the world, what do you think are the major concerns for families like yours and what do you think government can do about that?
From the comments on previous posts, I know that insurance and health care is a huge concern. Myself, I'm particularly concerned about education, particularly the drive for inclusion and the ways in which No Child Left Behind has not been helpful to students with developmental delays. Certainly, there needs to be some thought given as to why so many families with special needs are struggling financially, and whether standards for aid need to be broadened and workplaces need to be encouraged to be more flexible in scheduling so that parents don't have to choose between a job and a child's care.
What's on your wish list? Share your thoughts in the comments.
Read more:
- Sarah Palin and the Responsibilities of Special-Needs Parenting
- Sarah Palin is the Republican VP Nominee!
- News and Views: Sarah Palin
- Discuss Sarah Palin in the Forum
Photo by Win McNamee/Getty Images
[A note on comments: I would like the discussion on this post to stay true to the post's topic of sharing our special-needs political wish lists. I have created a forum folder for broader discussion of Palin's candidacy, including topics for just positive and just negative opinions for those who don't care for the arguing. I will not go back and cut comments from this post that are off-topic, but from here on in -- past Comment 12 -- I will be pruning at my discretion.]
Reading online about the McCain-Palin plan, I think, so far anyway, its all political posturing…
A quote from Andrew Dzeguze
“Okay, here are some issues about McCain and Palin’s views of the special needs community from a review of the McCain-Palin official website as of this morning, and other choice McCain comments:
1. On the campaign’s website, there is NO discussion of special needs kids or adults (other than a bland comment that he’ll keep investigating the causes of autism). No mention of DS, CP, MS, PDD-NOS, MD, Asperger’s, organic brain damage, fetal alcohol syndrome or even the phrase “special needs.” Apparently not worth discussing.
[Editor's note: I'm trimming here because Andrew has posted much of the same comments at #23 on http://specialchildren.about.com/b/2008/09/03/sarah-palin-and-the-responsibilities-of-special-needs-parenting.htm. Please go read his words there for more. -- TM]
I followed this up by actually reading the mccain website and andrew is correct.
I was really hoping a women and mother of a special needs child would be a crusader for children, of all kinds. But I believe she is just going to toe her party line.
I’m so sorry, I forgot to include my wish list.
I do not have a special needs child, but my nephew is. And I see the extra time, years really, my sister-in-law spends to her child’s positive benefit. I wish that there was more, much more, coverage in the first 3 years for speech and physical therapy. The first 3 years in a disabled child’s life are so critical!
In addition, more support in the work environment for working parents of children. I get called from work very frequently on child related emergencies, is quite a juggling act. My sister-in-law gets called more frequently and is so stressed from the pressure that she gets from her colleagues. Our work hours are too long, to the detriment of our children I think.
Maybe they haven’t updated the site yet!!??
I am holding out hope because at the very least, I see Palin and McCain valuing special children. Obama is too far left, and his devaluing of unborn children through legistlation that subsidizes abortion leads thousands of exceptional babies being terminated each year.
From Obama’s platform, it is more socially acceptable to abort a Down Syndrome baby than to be a running for office as the mother of one.
My wish — to live in a world where we hear great things about special children; to raise my children in a world where they are not just a burden to tax payers but where they are seen as beautiful, valuable; to live in a world where no one would consider aborting their child because there is a chance he/she will be born “imperfect.”
I just want my son to have BASIC insurance coverage…you know the kind of security you have when you feel like “hey, I can now get into a car accident and won’t have to worry that my son’s medical expenses will wipe us out financially…” it’d be hard to be homeless with three other girls and a wife and the family dog you know…
sounds like Maisey’s already buying into the R spin machine with the whole Obama is liberal and that wedge issue of abortion that has fooled millions of Americans into voting against their own best interest…
if Mcain/palin were so much for “valuing” special children, don’t you think they’d have a plan to help special children posted on their website like that Liberal Obama…
http://www.barackobama.com/issues/disabilities/
let’s please leave out the wedge issues that have done no one any good…The R’s held the WH, congress and Supreme Court and what did they do about abortion? Nothing, because their lip service to this issue has gotten them millions of voters that vote one issue even when it means they vote against what is best for their own family….
my special needs kiddo is seven today…happy birthday son…he loves candy canes and dressing up like superman….we’re having a candy cane party for him…you know how hard it is to find candy cane stuff in Sept?…I hope to be able to give him the health insurance that he needs soon…and not just for special needs kids but for CHILDREN in general……if this new advocate for spcial needs kids gets into office with Mr War Machine, I fear my son will be 11 before he will have health insurance…
my son deserves better than lip service…
Dear Ms. Palin:
Since you have told the nation that you will be an advocate for special needs children and their families I need you to start advocating for me right away. At the present time I am swimming in more than $2000 in medical bills that Blue Cross is suddenly denying. They no longer feel that my two boys with autism need therapy. In addition, after a delay of almost 3 years my husband and I finally won a court case against the CVCR in California who are suppose to provide services to those individuals with autism. If I spent my day doing EVERYTHING I needed to fighting the insurance company and the state it would be a full time job. Therefore I have decided to take you up on your offer to advocate for me. Please send me an address where I can mail this huge notebook of bills and denials. I promise I will help you someday too after you have had years of denials for your son. Oh but you will have the congressional insurance plan so you probably won’t have any of the issues that I do.
Thank you for your help in advance.
Cheryl
As a 2 income household with 1 child that has special needs, it has been a struggle to keep up with the cost of therapy, etc. We have good insurance but there are lots of expenses.
My Wish List:
1) Provide Free Lunch to students with disabilities regardless of income
2) Let siblings of students with disabilities to attend Pre-K (similar to the Pre-K program for foster kids and kids of active military families)
3) Get rid of lifeskills classes or self-contained classes.
Improtant point – People need to be first and I am offended when the person isn’t placed first, I have a 30 year old son who is developmentaly delayed – not a developmentaly delayed son!!! People!!!–the PERSON COMES FIRST NOT THE DISABILITY and when those of us who are in this community of persons with special needs place the person first then others will follow suit. Now having said that, I have a large wish list for my son but will try to keep it managable.
Continued education past high school,of course health care, a better structuring for SSI qualification so he can have a larger savings account to cover possible “rainy days”, and an oportunity to inherit money and property allowing him to continue his present life style and not jeopardizing his continued participation in SSI, and of course long term care when my husband and I are gone.
My son recieved a wonderful education and I am thankful for that. However the day he graduated from high school was the day his formal educational opportunities stoped. I wish he could continue to build on his daily living skills, money handling, and social interactions similar to what was offered in a structured education situation. Not necessarily everyday but periodically so he doesn’t loose what he has and actually gains more knowledge. I as a parent try my best to teach and model for him but sometimes he learns better from another “teacher” in his life.
Health care is on everyones plate as far as a wishlist is concerned. However, there has to be a way for coverage of proceedures and treatments that are labeled “experimental” or are to new that the insurance compaines aren’t on board with them to be covered so families who require these new precedures can get the help they need and not go through all the hassels they have when fighting coverage.
My son is presently working in what is refered to as a sheltered workshop. He loves his work and goes to work everyday putting in a 36 hour week but is paid by the piece!!! I know one reason his wage is structured this way is so his SSI and health insurance would not be radically affected but really some weeks he only makes less than $5.00 and he does work hard for that.
He is only allowed a $2000 maximum savings (now how far is that going to take you these days?) and can’t inherit any money because this would affect his SSI. (If you really look at SSI and the monthly maximum amount received – no one could possibly be making any money once daily living expenses are taken care of) I would like to have him inherit property and an appropriate amount in savings to augment his SSI so he could have a dinner out and maybe buy his t-shirts he loves so much, etc.. The little things that you or I enjoy but he won’t be able to do or buy when my husband and I are gone. I know there are ways to “get around” this delema but why can’t I leave my son something directly like every other parent can do for their children?!
My son does not have any siblings but I worry where he will live and who will look after him when we are gone. Will my husband and my wishes be carried out once we are gone and our son will spend the rest of his days being happy and secure. His cousins are very good to him and I know they will watch him but . . . ?
Being a parent of a son with special needs has been a joy more than a worry. I wouldn’t trade my life for anything because he has allowed me to see the world in a different light. This is not to say I don’t wonder what his life would have been like if he were “normal” but that was not to be and I have accepted long ago our path in life and have cherished every step.
I hope if nothing else ever comes of Gov. Palins run for VP than a hightened awareness
in our country for PEOPLE with special needs and how to improve their lives I will be happy. I will continue to advocate for my son and hope every parent will do the same – don’t give up you all can do it.
First:
Please do not mix up a stand on the right to chose abortion with honouring the needs of our special children! Except that usually those who respect the rights of individuals to chose will be the same who will fight for the rights of our children.
Respecting the right of individual females’ right to chose abortion has nothing to do with respect, care and love for those with special needs.
Second:
Palin tows the party line totally>
The Republicans only respect the “right” to out-of-wedlock children for those who are able to financially take care of them themselves. The Republicans state very clearly that it is not the responsibility of the government to care for any out-of-wedlock children of poor families; no matter what the situation which led to the pregancy, rape, child abuse, ignorance, etc.
Their attitude and laws regarding the above are the same as those to people with special needs. Only people with enough money have the rights.
So don’t be fooled by the fact that Sarah Palin is a female body, or what she appears as personally. She tows the party line with vehemence.
They can talk all they want about “understanding”; but keep looking at what they actually propose in law and supports.
Plus, personally, she has other, older children and a husband to take care of the youngest child; and she can afford in-home childcare if necessary. So what real empathy or understanding will she have? Not much
The Republican party has never been concerned with those who need; and they are not going to start.
I live in a Democrat state of NY and my programs were cut 5 years ago for my son who has Asperger Syndrome High Fuctioning. I moved my family to Tampa Fl for a test program called a SLD (that changed my son’s life!) that went on in 3 County’s in FL and NC. Jeb Bush was in office a huge supporter of Autism. I am a with no party but I must say due to the fact Sarah Palin speaks to me as a mom and advacte. I believe she is are only voice in any White House of either party. I jumped for joy when she spoke to us Special Needs Parents in here address. Finaly we been even mentioned as a majority and not a minorty that we have voices and issue’s! I would love to see her due a Town Hall meeting with us parents!
My wish would be that mental health needs would be treated by insurance companies and SOCIETY AT LARGE as the same as a physical disability/disease. Our son was horribly abused at the orphanage in Ukraine we adopted him from but try and get any kind of help for post traumatic stress disorder, generalized anxiety disorder and reactive attachment disorder and you are up the creek.
Like others, I’m disgusted by the judgemental attitudes people are taking towards Palin and the questioning of her commitment to her family. All 3 of my children have special needs, and I work long, long hours while my husband is a stay-at-home dad. I have been the target of exactly the same attitudes from teachers, other parents, etc. — one teacher went so far as to BLAME me for one of my children’s special needs (PDD-NOS), because I wasn’t home enough. There is not another human being on this planet who knows my children better than I do or who does more for them — I don’t need to be in the same room with them to being their mom and planning for them every waking moment of my day. If this woman is going to bring national attention to the truth about special needs families, and at the same time show the world that neither we nor our children ought to be out of sight, out of mind — then God bless her (as He already has)! I was already planning to vote Republican, but now I’m going for bumperstickers and the works! You go, girl!
So, for those of you that get all tingly because this gal (Palin) just spoke some words about it in her speech, did you realize that President Clinton said something about families with special needs kids in his speech to the Democratic community? Last I checked, the Clintons don’t even have a special needs kiddo….and the CLASS funding (which my son has been on the waiting list for since Bush took office because his R party cut funding) was increased under Clinton. The same CLASS program that Obama is promising to expand as soon as he gets into office…
but hey, vote for her cause she “asked” for your vote but has done nothing but vote against our type of families in Alaska…get that bumper sticker and try to get others to vote against programs that will help your child and mind…makes sense to me…
Given Sarah Palin’s ultra conservative politics, I don’t believe
> she’ll be interested in the kind of healthcare reform that all
> children (and adults), and especially special needs children need.
> As parents of special needs kids, we all know the kind of financial
> drain involved, and how little health insurance (when we have it!)
> covers. She made a lot of dramatic statements, but the facts
> conflict with much of her image–on pork barrelling, on earmarks, on
> using alternative energy sources in addition to oil. Her defense of
> her family’s privacy would be laudable if she didn’t believe in
> invading other families’ privacy in decision-making. Everything
> about her suggests skilled self-promotion first, country last.
>
At the top of my wishlist is increased research funding for what is causing the autism epidemic and also how best to treat autism. There is a big discrepancy in how research dollars are spent: $394 million is spent in researching pediatric AIDS, which affects 1 in 8,000 while $42 million is spent researching autism, which affects 1 in 150. We need more research NOW to figure out what is causing this epidemic and help the children and families who are living with autism. I believe Sarah Palin when she says that she will be an advocate for children with special needs, because I as a parent of a special needs child know that one of the strongest and most determined forces in the world is a parent advocating for their special needs child! Palin is a new parent of a child with special needs, so she will need some time to know exactly HOW and WHAT she wants to advocate for the special needs community, but I have no doubt that she will!
As a mother of a child with special needs (autism) for 7 years, 4 of which I have known he had autism…I feel I have more experience than Sara Palin than she herself has experience.
I’m bordering on upper-lower class. Single mom. Two kids. Working full time. Child Support every month and I can barely afford to pay my car payments, gas, food. I can’t afford a specialist for my son. Thank god his dad has medical for him, but it still doesn’t do much for him other than offering a diagnosis and if I believed in medicating him, it pays for prescriptions. How is her plan going to help me and my son? Seriously, what is her plan other than to just “be a voice”. I actually don’t want to hear her bark. I want to see her bite. I want to ask her in person what she actually means. Or if it’s just a political ploy to get votes from parents of children with special needs in “hopes” that someone is actually going to do something.