Issues, Boy Have We Got Issues! Autism, Texas Institutions and Assisted Suicide

There is so much going on in the disability community at the moment... And if you ask, as I mentioned in my last post, Where Does this Lead? The answers are pretty upsetting...

Let's start with this:

Institutions: Now, just a few months ago the world was horrified by the story of Fight Clubs in Texas institutions where staff goaded residents to fight for their entertainment. And Texas, rather than investing in the tough work of dismantling this system and its culture of contempt and violence REWARDED the system by superfunding it...

Where did this lead?



This makes me ill.

Assisted suicide: Bill Peace talks about England's developing stance that although helping kill someone is against the law, in the case of 'severe disability' it may be understandable and not be prosecuted.

Where does this lead?

Over at Not Dead Yet, Stephen Drake has the sad story of a woman in Arizona with a disability who killed herself and was hailed in the newspaper as a hero for doing so... Disgusting--especially since most of her 'struggles' could have been alleviated by a decent public transit system, affordable healthcare and a caring community...

Pitiful, uneccessary and portrayed--sold--as perfectly understandable.

Where does that lead?

Y'know, outside the disability community, many folks see Down syndrome as 'severe.'

And now another disability organization sells out its constituency for the almighty dollar... They get funded while teaching the world that autism is evil.

Where does this lead?

Will it help parents, neighborhoods, schools, communities and employers welcome people with autism into community life? Will it increase understanding and acceptance, increase funding for things like assistive technology and other things that improve lives for people with autism?

Yesterday I heard a mom say that she wouldn't have her young child vaccinated against H1N1 for fear of autism... does she really fear autism more than death?

Why would she, do ya think??

Here is a disability campaign I like: and here is a place where you can create your own campaign poster (and be in a contest!)

Trouble of course is that pity is lucrative... solidarity isn't. There should be something we could do about that,

In the meantime, pandering for bucks has a name...

Not a nice name...

So what can we do?

We can speak up, we can look for new and clever advocacy strategies, we can be present and visible and heard and expect respect... We can build something better.

If we pay attention and ASK!!!

Where does this lead????

We can be consistent and we can STOP the messages about disability that will lead us places we don't want to go.

On your mark, get set, GO!!!!

We have a lot of work to do!

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!

Transition is an Obstacle Course

My idea for this post far exceeds my technical expertise (and my patience, I'm afraid!), but...

I hate transition. Actually I don't mind transitions so much, but Transition (with a capital 'T') stinks. I hated it when my daughter had to make the leap from Early Intervention to school, and now that she is moving to high school and adult living is the focus of everything at the same time that my son has a Transition plan to ready him for college I REALLY hate it.

But I am paying attention, Gentle Readers, and I am figuring out the path so I can pass the scoop along to you. The following is the grand tour of what I have gleaned so far:

The Transition Obstacle Course

Start: You begin in the Playground of the Past. It is familiar there, but it no longer fits. Your child has outgrown the slide and the swing and the sandbox, exceeded the age and height limits. It's time to go. This can be a happy or sad moment depending on how well it ever worked for you, but there WILL BE some emotional backlash. Prepare yourself.

Next: The Ladder of Information--this is a VERY high ladder with widely spaced rungs. The first rung will be the propaganda (brochures, etc) about your future options. Next will be their reputation in the community. Your next info will come from personally visiting the place or places and right up near the top is the rung called 'the inside scoop'. This rung is helpful, but may not exist in which case you will have to jump over the space--just don't look down.

At the top of the Ladder of Information is a high diving board. You will jump off the board and land on the Trampoline of Gut Feelings. If you are like me you will bounce around on that for a while.

From the Trampoline of Gut Feelings you must jump and land with one foot on each of two scooters (the wooden seats with wheels we used to use in gymclass--I will try to find a picture!) The two scooters will immediately roll away in opposite directions bringing you to the Split of Decisionmaking. Any compromises, contradictions, uncertainties or inconsistencies you encounter will roll the scooters further and further apart.

After the Split of Decisionmaking we move to the Hoopjumping portion of the course. Here you will encounter 3-10 hoops of varying heights and sizes, and any or all of the hoops can burst into flame at any time. At the very least you will encounter the hoops of qualifications, applications, and justifications--there may be more and you won't know about them until they are in front of you.

After Hoopjumping comes Platespinning wherein you will endeavor to keep all of the applications and information moving while the powers-that-be deliberate the fate of your child. This can be a very long phase. Very long. And exhausting--exciting background music helps.

After Platespinning you will be dumped into one of two destinations:

The Mud Puddle of Rejection from whence you will towel off and start all over again, or...

The Swimming Pool of Acceptance. You will swim in this pool for a bit, getting the feel of things. If it turns out to be a lovely, fun, idyllic swimming experience you will then leave the game.

If, however, the Swimming Pool of Acceptance turns out to be a filthy pit of vipers and sharks (or Fight Clubs) it's back to the beginning for you! (Note: some folks opt at this point to stay in the scary pool because going back through the obstacle course seems more grueling than dealing with the sharks...)

One major benefit I have found is that I do not have to face this course alone. There are people who can help make this obstacle course easier. There are Transition Specialists and Transition Projects around the country and I find great help from other parents of kids with disabilities...

And yet I still hate it.

Sigh....

Fighting Without a Club

An article from the AP on Media Dis&Dat yesterday said that there has been more fighting at the Corpus Christi State School in Texas in the last few days. I hope they knew this was going to happen and I hope they are doing something SUBSTANTIVE to prevent even more.

This continued fighting is totally predictable. That facility has developed a culture of violence and a little news exposure isn't going to fix it.

Residents have been rewarded for fighting--perhaps in a concrete sense, but certainly with attention and cameraderie. They will miss those rewards and if they don't get them they will amplify their behaviors to get them.

They need a plan to address this and dedicated, round-the-clock implementation of that plan by people intent on and capable of leading.

A few missing staff will not be enough to change an overriding tolerance of harsh or physical expression--among the staff or the residents. Leadership and everyone below them has to be dedicated to change--because frankly, in the break room, staff are most likely saying things like, "Yeah, they say they want change and we have extra staff and extra help, but as soon as the heat is off it will be back to business as usual."

Why? Because they have heard about change before...and things might actually have changed for a while, but after a while attention would turn to other things, money would go to other projects, blah, blah, blah... and the old way would come back.

Why do I know this? Because it's the same everywhere. "From now on..." is often a very short lived proposition.

There probably is a handful of believers on staff who are hungry for change, but they never had power--formal or informal--and, more than likely, they still don't. They will need to be supported. And protected--people who are willing to incite violence and take pictures are a pretty brazen bunch.

And the organization need to bring in help. They need experts in culture change and they need to increase their oversight drastically in ways that fit with the culture they wish to change to.

Culture change is an extraordinarily difficult process and the larger the organization involved, the harder it is to accomplish. And most organizations that undertake culture change have time to build the change they need. These institutions need it NOW. They may find that the only way to change the culture for so large a group of residents and staff is to break them into smaller groupings. That is what they are finding in eldercare.

Either way, few arrests won't be enough to make the difference they need.

And unless they enact sweeping changes now, more fights and more injuries are all they can really expect.

More about Institutions

The conversations going on around the troubles in institutions in Texas this week have interested me.

One of my best friends lives in Texas and has spent the better part of this week calling her legislators about this issue. One of the legislative staffers implied to her that the whole "fight club" occurence wasn't that serious because the victims had been evaluated and didn't appear injured.

My friend stopped for a moment and then said, "If people with disabilities were seen as equal this would not even be discussed. We would just be upset about the bad thing that had happened to our friend or our neighbor."

The staffer had to agree.

In another conversation I had this week someone pointed out that abuse can occur in smaller settings as well. And this, of course is true. But when people live in neighborhoods, go to schools and restaurants and miniature golf courses with everyone else, abuse can be noticed. Being seen and being known are protective.

One of my first blog-posts ever contrasted the media coverage and experiences of a man who died in a Missouri institution and a pastor who was shot in Texas the same week.

Dave Hingsburger has been running a series of posts about a woman he had seen while he was out shopping who was being abused by a caregiver. He gave her his phone number and told her to call the police. She did call the police. And him. Her Caregiver is being investigated and charged...

Had she lived in an institution, away from shops and neighbors, Dave would not have been there to notice.

Food for thought.

Timing is Everything: The Texas Institution Scandal and HR 1255

Over the last few months there has been lots and lots of exposure of problems in the institutions that "serve" people with disabilities in the state of Texas.

First came problems at the Denton School, an institution that houses several hundred children and adults with cognitive disabilities in .

Then after lots of investigation the oversight committee came to the conclusion that the large institutions that have proven more dangerous AND more expensive than smaller, community-based living situations do not need replacing, they need new names and a PR campaign...

Better lives through spin.

Then came the Iowa Turkey Farm Debacle--21 men from Texas who were found to be spending their nights in a run-down former factory and their days allegedly in indentured servitude to a turkey packing company...

And this week it turns out that the carers at Corpus Christi State School and possibly at others have allegedly been holding a "Fight Clubs" where they wake the residents at the schools in the night and stage fights between them. Allegedly the carers goad the residents, laugh at them and film them--there is investigation to whether there was gambling involved...

And this week an action alert came from NDSC that Rep. Barney Franks has introduced legisalation that will limit the ability of Protection and Advocacy agencies to bring class action suits against institutions where abuse, etc of people with disabilities has taken place....

ARE THEY KIDDING??????

Action Needed:

Contact your representative and ask him/her NOT to cosponsor or in any way support H.R. 1255. Call the capitol switchboard 202-224-3121 and ask for your Representative's office. (To find your Representatives go here.)

Talking points are as follows:
*This legislation is not needed and would harm individuals with disabilities.
*It would harm the efforts of parents and advocates to work for community services and support needed to live in the community.
*It would limit the efforts of lawyers to represent our constituency.

Picture from here.

Katie

In Tazewell County, IL on 1/18/08 Dr. Karen McCarron was convicted of the murder of her 3 ½ year old daughter, Katie. According to news reports Dr. McCarron stated to the police and to the jury that she had suffocated her daughter with a garbage bag on May 13, 2006 purportedly because she had a diagnosis of autism.

Cases like these are terrifying to the disability community. There is a common perception that people with disabilities are perpetually ‘suffering’ and that this ‘suffering’ is somehow contagious to everyone around them. This perception seems to throw a switch in some folks that almost imperceptibly moves them from being human WITH someone to being humane TO them. The person becomes less important, the ‘suffering’ (diagnosis) becomes the only thing that matters.

Once the ‘suffering’ becomes the focus, alleviating ‘suffering’ becomes the goal—or obsession—and what happens to the humans involved is seen as collateral damage. Anything can be justified.

In Katie’s case the perception that hers and her mom’s suffering were monumental persisted even though she had not lived with her mom in months and it was reported by all the folks that she HAD lived with that she was happy, singing, loveable, little girl.

While daily care presents challenges for people with disabilities, clinging to the slippery slope created by prejudices, general perceptions and policies is an out-and-out battle for survival. Organizations like Not Dead Yet exist to fight this battle.

Throughout history this battle has occurred on many fronts—babies with disabilities were left on hillsides to die in ancient Greece and folks with disabilities were high on Hitler’s extermination list—and it rages on today.

In the last year there have been stories out of Portland, Oregon and Lexington, Kentucky telling of abuses in large institutions—and these are just the stories that made the news. Our taxes continue to fund these institutions despite overwhelming evidence that they are much more expensive (and less desirable) than community-based housing alternatives.

Life expectancy, health, educational gains and quality of life for people with Down syndrome are higher than they have ever been, yet the American College of Obstetrics and Gynecology came out with a recommendation last year that ALL babies in utero be tested for Down syndrome. They made this recommendation while knowing that 85-95% (depending on who you read) of all positive tests for Down syndrome result in abortion. And one of my friends was at a conference two weeks ago where it was announced that the birth rate of babies with Down syndrome in California was nearly down to zero.

In the last couple of years there have been surgeries performed on children with disabilities that would be refused to people without disabilities even if they requested it. There is an overriding belief—even in this age of amazing accomplishments in science and technology—that the challenges of disability are just impossible to address any other way. And that anything is justified to alleviate ‘suffering.’ The effect on these children of being customized for ease of portability may never be known, the effect of treating a person with a disability in ways one would never treat a person without a disability (aka dehumanizing them) diminishes everyone. It is a sign telling us who we really are.

The disability community is relieved and grateful that the judge and jury in Illinois recognized Katie’s humanity and convicted her murderer.

Her father told reporters, “If the measure of a person’s life could be quantified by the number of people that loved them then Katie, in her brief 3 ½ years, achieved well beyond all of us.”

Pictures (and context for which they may be used) here.