Friday, October 17, 2008

Pondering special needs…

Happy Friday, chil’ren!

Let’s jump right on in, shall we?

The fact that the Palin family has a child with special needs (her son has Down syndrome) has sorta-sparked a national discussion on the needs of children with special needs.

Longtime readers know that my older brother is autistic…’cause, Gawd willing, special needs children grow up to be adults with special needs…and I’ve written about the ups and downs of co-guardianship and dealing with the system.

Supporters of Gov. Palin like to use her choice to knowingly have a child with Down syndrome as some sort of example of how it can be done. I’m the youngest in my family and I’ve never known a day without autism…the Palin family is just getting started, trust a bitch.

Special needs are needs, for the love of all that is logical. My brother is 38 years old and my parents struggled to pay for private school, therapy, special camps and treatments followed by assessments followed by treatments followed by meds that weren't covered by insurance and so forth and so on. Now that he is grown he is vulnerable to funding cuts that have taken away dental coverage and supported employment programs.

The fat was trimmed long ago...but The Man hasn't put the scalpel down.

The lifetime costs of caring for a person with autism are estimated to be around $5 million dollars and only some of that shit is covered.

When a family has a loved one with special needs everything changes. Personal time…vacations…daily rituals...everything changes and a lot of shit is taken off the table. I recently wrote about the lack of funding and support for programs that benefit people with special needs at RHRealityCheck because we need more than rhetoric…we need leadership, programs and the motherfucking funding to put them to work.

There are some great programs out there…at the state level and at the federal level…that would really help out, but too many have been underfunded or eliminated. Families need respite, financial assistance for therapy and special education…we need government to value our families too.

And now, with the economic crisis sure to impact what the next President will be able to do, we need our needs to be a priority...on the must-do list and off the cut first list.

Senator Obama has a ain't perfect, but it is a plan that we the people can work to make happen.

Senator McCain?

***cue crickets***

Mayhap a bitch should get Joe the Plumber to ask where the fuck it is?



Anonymous said...

Nice . . .

Unknown said...

Like fighting poverty, the government always finds ways to suck money out of important and worthwhile programs so they can rathole it away for a war, corporate welfare or Buddha knows what other fresh hell they find.

Informative writeup Shark Fu..thank you.

The Bear Maiden said...

You know, I've been thinking about Palin trotting out her poor, unsuspecting (grand?)son, talking about "I know, I understand, I've a (grand?)child with special needs", and I want to scream... "Baby, you have no idea".

Now... I don't have the total idea... but...

I have friends who do. And no, I can never ever understand the day-to-day hardships of struggling to care for a person with special needs... not personally. And so I felt unqualified to call her out on it. But I have been in line at the zoo with Jonny (who's autistic) and watch him get agitated and saw how his aunt and his mom had to calm him, enduring the looks of strangers. And it's OK when when they're little... but Jonny is a teenager now and is taller and stronger than his mother.

I was there the night he wandered off into the dark, with his portable DVD player around his neck, snapping his fingers. His whole family, strangers and police were out looking for him. It did no good to call him because he's mute. My Sun kept saying "I hope we find him". We did... crouched behind a police kiosk, watching his DVD player, snapping his fingers and smiling.

Raising a person with special needs requires EVERYBODY's help. And lifelong help. Not just the 4 months you were paraded around the media, a cute, sleepy little baby. Palin has no idea what she's in for.

I'm glad you are able to tell her.

Earl said...

Congratulations Sharkfu on a well written article about special needs individuals.You definitely have more insight than most because you have a family member that requires unique care.Palin and McCains use of this issue is

Anonymous said...

You may like reading this

The Lazy Iguana said...

I am sick of hearing about Palin and the special needs baby that the family (whoever the mother is - and it really does not matter in the slightest) decided to keep.

Because they have money. And if you have money you can hire private full time care givers.

"Joe six-pack" can't.

God forbid, if she becomes the next VP the special needs baby will have secret service agents, a most excellent health care plan that WILL cover ALL needs, and Palin will have a personal chef to do all the cooking, cleaning staff to take care of all the house work, personal drivers, and much more.

They are far from the typical family dealing with this issue.

She talks about it now - but I think that if she really said what she thought then it would be shown she is no friend to families with special needs members.

And why on Earth does the family have to drag their prop baby out every time they can? At rallies - out comes the baby! After debates - out comes the baby! Convention time - out comes the baby! 11 PM? Not a problem - drag out the prop baby!!

I would not drag a perfectly normal baby out at 11 PM!

But they do. As if they can not find anyone to help take care of the child.

What bullshit.

Anonymous said...

I'm a social worker who also has an older brother, the same age as yours, who has schizophrenia. While he hasn't had a lifelong disability, he has needed considerable added supports, like group housing and therapeutic and social training. I have been frustrated in my role that in social services, it always seems like the system is as lean as it can get and then they cut another 20-30%. I don't think people even get how much harder it gets for families.

My cousin has Down Syndrome. The medical issues are even more challenging than the mental retardation. You are right, Palin is just at the beginning of this struggle and has very little idea and empathy right now about how difficult it is.

I've been told my numerous people how my brother should work, though he wakes up every night b/c his medications don't stop the constant auditory hallucination and nightmares and finds it overwhelming to deal with other people--with the medication so strong he has lost jobs b/c he has difficulty staying awake. I would love to see a candidate with a disabled adult in their family as well and in general, I'd like to see all sorts of people humanized and receive the care and support that would allow them to reach their potential.

But all we get from the right are platitudes and supply side economics.

Royce Penstinger said...

In a perfect world, every one's needs percieved or real could and would be taken care of...we do not live in a perfect world. Taking care of a special needs child is not an easy job, but I disagree with you when you state their needs, their programs should take precedent over others.

You brought up the figure of costs being $5 Million dollars to take care of one Special Needs child. That five million dollars would pay for the college educations of some 100 children that might not otherwise have a shot at a higher education. Sure the number of children that could be saved from starvation in a 3rd world country with that $5 million dollars would run into the thousands.

Like it or not, too often who gets saved, who gets money requires some very hard decisions, and am sure one of those decisions, is how can we help the largest number of people with the limited funds we could be that sad reality is why many special needs programs fall on the wrong side of the budgetary chopping block.

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