Saturday, May 23, 2009

Attention Parents of Young Children with Disabilities: The Fight Club Video and the Community Choice Act

There is a horrible video from an institution for adults with disabilities in Texas where the employees forced the residents to fight for their entertainment. I know many parents of children who say they didn't see it and won't ever see it because it is so upsetting.

In a lot of ways I don't blame them a bit. It isn't that they don't care, it's that they hope to change future of the disability community by putting all their energy into building up their own child and helping them be the best they can be.

I applaud their efforts--I have done (and do) the same myself.

But because of this focus many parents don't get involved in disability issues, don't call congress or sign petitions. And this is a shame.

You know what the worst part about the "Fight Club" video out of the institution in Texas is?

It wasn't Willowbrook. In the legendary Willowbrook expose from the 1970s the facility was run down, the residents weren't dressed and few had had any education at all...

In the Fight Club video of 2009 the place looked decent, the men looked clean and modern and well dressed, many or all had clearly been taught much--they could speak and more.

And still they were victimized.

Like every other parent who watches that video my very hairs are standing up on end, screaming, "NO, NO, NO... NOT my child!!!! Please no..."

The sad truth is that to create the world we want for our children with disabilities we have to do more than bring them up. We must participate in creating the situations that will receive them.

We must get them ready for the world AND get the world ready for them.

The good news is we don't have to kill ourselves doing this. We don't have to make it our full-time (or even part-time) job. There are many, many ways to be heard and make a difference without becoming overwhelmed--honest.

First: get yourself a decent source of information. You don't need to watch all of the videos and read all the hours of congressional testimony yourself, but you need to pay attention to someone who does.

The National Down Syndrome Congress, The American Association of People with Disabilities, The Arc and more have government newsletters and send out action alerts to let folks know about the important issues.

Second: Read the e-mails you receive. Or at least a percentage of them (LOL!)

Third: Take an action. Make a phone call, write a letter, fax something. These are all short actions that add up to big impact. If you feel the need and have some energy to invest, join a committee or visit a legislator (or more than one.) Don't burn yourself out, just pick an action and do it.

Fourth: Forward the e-mail to your friends and family and ask them to help.

Right now there is a problem with Medicaid. It easily covers institutional care--it wants to pay for care to be given in institutions or nursing homes. It does not cover care in individual homes. (They call this institutional bias.)

This is a problem for people with disabilities (who get medicaid when they are unemployed, or considered uninsurable by their employers' plans) and for older folks who want to stay home as they age.

Now, care at home in neighborhoods is better. No one drives past an institution of any kind and wishes they could live there.

It is cost effective. They estimate that community living costs around 1/3 less per person than institutional care.

And if the nightly fighting from the Texas video had been happening in a neighborhood home SOMEONE would have heard it and complained.

Call your congressmembers. Tell them the Community Choice Act matters to you.

Creating the future your child will thrive in begins at home--and in the world.

We can do this together.

Let me know how it goes!

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