Wanting Community

I think when most people think of institutions for people with disabilities, they assume that institutions are really a thing of the past. In the olden days, parents of a young child with a disability were advised to send them away to an institution. Surely that doesn’t really happen anymore — we’ve come so far.

If most people stop and realize that these institutions really do still exist, they probably imagine the conditions there being much-improved over the old black and white photos that we’ve seen from decades ago of mostly-naked, malnourished people sitting in the corner of a plain concrete room with other mostly-naked individuals, curled up into balls and rocking back and forth.

However, as I have learned the last couple of years, these institutions do still exist. And parents still send their children there. And from what I’ve learned, the conditions have sadly — tragically — not improved much.

(I should note here that I’m talking about Texas’ institutions because those are the ones I know about. I’m unaware of  conditions in other states; but I would unfortunately have to guess that all state institutions lack a standard of care that would meet your/my approval! I know, too, that 13 states no longer have institutions.)

You may know them by the name “state school.” In Texas today they’re actually called State Supported Living Centers or SSLCs. And the state of Texas still has 13 of them. In fact, in Texas, living in an institution is the only entitlement a person with a disability has. Yes, there are some programs that enable the person with a disability to receive Medicaid services and also some community supports, but there is a years-long waiting list for these services. Like literally an 8 to 10 year wait list! They are called “interest lists” and there are many, many people waiting… waiting for the services and the medical coverage that they need in order to stay in the community, stay with their family. (See this link for the actual numbers of people waiting.)

If the family of a person with a disability cannot afford to pay for the care of their family member, and their loved one’s name has not yet come up on the interest list, then the only choice is for that person to be placed in an institution.

And Texas’ SSLCs are notorious for abuse and neglect. What more would you expect from a setting that is totally segregated from society, having its own medical facility, etc. Closed and locked doors. Residents who can’t report the abuse; “professionals” who don’t take the residents’ complaints seriously. It’s easy to get away with abuse and neglect in that setting. No eyes. No ears.

And to make matters worse and more complicated, it actually costs the state (and its taxpayers!) way more money to house an individual in a SSLC than to support them out in the community.

So over and over and over the abuse goes unreported. And even when it’s reported — even when it’s confirmed — nothing is done about it. Abusers go unpunished — and even keep their jobs! Doors remained locked. And money is poured into the management of these institutions to keep them open and running, housing our most vulnerable citizens.

Can you tell it’s a soapbox?? Can you tell it makes me crazy?

It does.

And that’s why our family decided to make our voices heard at a recent rally at the Denton SSLC, formerly the Denton State School. CommunityNOW! along with some other organizations organized the rally/press conference and invited the public and the media to attend.

The rally was scheduled for the 10-year anniversary of the horrible abuse of a young resident: Haseeb Chishty. Haseeb was horribly abused in the Denton facility, and his life is forever altered because of it. He now lives at home and receives constant care from his family. And nothing has been done to date about the abuse Haseeb received.

So Paul, Elliot, Zippy, Chloe, and I joined with other concerned citizens, holding signs for the passersby to read. We heard people speak up about never wanting to be placed in an institution… they instead want their community services to remain and increase. We heard people explain the importance of speaking up to our legislatures about change. And we called for the closure and/or downsizing of all of Texas’ SSLCs.

And we were a part of it. All 5 of us. Because it’s important to us. Because it is very close to us. Because hopefully our 5 voices joined with all the other voices will finally be heard and will be a part of bringing about justice and bringing about change.

And we will be able to say that we were a part of that movement. And we will celebrate!

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5 responses to this post.

  1. Posted by PAPA on October 8, 2012 at 4:15 PM

    you go girl!! I know you all get tired,but stay the course,you are making a difference! I love you and am so proud of what you and your family do.


  2. Posted by Angel on October 8, 2012 at 4:17 PM

    Thanks Kelly for your family’s ministry to give voice to the voiceless. So proud to call you friend, you’re so inspiring. Please let us know if there are ways to support your efforts from afar. Our paper has reported abuse on assisted living facilities with adults and it brought state-wide attention and investigation. Blessings on your fight!


  3. Posted by lifeandothermisadventures on October 13, 2012 at 3:22 PM

    This was a very eye-opening post. Thank you for sharing it, I plan on researching the situation in my own state.


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