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Hot topics: Curtis L. Decker on Texas institutions

March 11th, 2009

Curtis L. Decker, photo from NDRN.org

“Why would we be shocked something like this could be happening in these facilities when there’s been this long history of abuse?

– Curtis L. Decker

By Patricia E. Bauer

The news reports started coming out of Texas yesterday afternoon: Vulnerable men with intellectual disabilities were allegedly used and abused for their caretakers’ entertainment. Law enforcement authorities say a group of employees at the Corpus Christi State School in Texas repeatedly staged a “fight club,” compelling their charges to physically battle with one another.

The investigation began when someone gave authorities a cellphone that contained videos of the alleged abuse. As of now, seven state employees have been suspended from their jobs and the state has halted admissions to the campus.

Searching for background on the emerging scandal, we caught up with Curtis L. Decker. He is executive director of the National Disability Rights Network, the nation’s largest non-governmental enforcer of disability rights.  Decker is familiar with conditions in Texas’ institutions for people with intellectual disabilities because the NDRN has been investigating conditions and working with residents and their families for several years.

Q:. Based on your experience and observations, what can you tell us about what may be happening inside the institutions for people with intellectual and developmental disabilities in Texas?

Curtis L. Decker: There has been an absolutely demonstrated and documented series of abuse and neglect in these facilities, eight hundred staff fired over the last several years, numerous deaths, lots of complaints and lots of documentation of abuse and neglect. There has been nothing like this particular story, but why would we be shocked something like this could be happening in these facilities when there’s been this long history of abuse?

In December, our affiliate, Advocacy Inc. in Texas, asked the governor to put a moratorium on admissions to these facilities based on what we already knew. Now again we’ve called for that. And today the governor has actually now stopped admissions to this facility. It took this story. All the other deaths and abuse and neglect didn’t do it, but this story finally caught their attention.

Q: We know that the state of Texas has been the target of an investigation by the U.S. Department of Justice, which found that negligent and abusive care in the state’s institutions violated residents’ civil rights and contributed to 53 preventable deaths. How can this be going on?

Curtis L. Decker:
Texas relies on these large facilities with 400 or 500 people each. There’s an absolute refusal to consider alternative ways of providing care to these people. They rely on these big congregate facilities that we know from across the country don’t work, can’t work. Then we get these examples and horror stories of neglect, and they say oh my goodness, what are we supposed to do? It’s a complicated question. A lot of forces want to keep these places open.

Traditionally, the organized disability community spent tons of time and energy trying to convince policymakers that these places are outdated, outmoded, dangerous and ought to be closed.  And some states have gotten away from using them. A few states, Texas being among the worst, seem to be beholden to certain forces that want to keep them open.

There’s lots of forces that want to keep these places open — forces like the intractable bureaucracy. Then there are the unions who have an interest in making sure their members continue to have their jobs. They’re a very important force at the state level. And there are family members who think these places are the only place their children can live, which I think is misguided.

There is also a lot of pressure from the community. Some of these places are in depressed and rural areas, and they are like a company town. They can be the only source of business around. So there is a lot of pressure to keep these places open.

Q: In your view, why should these institutions be closed?

Curtis L. Decker: They should really be closed because in the year 2009 we have completely changed our view of what people with disabilities can do in terms of their potential, their ability to live in the community in a more integrated way that’s more humane and more reasonable. We certainly have around the country people with the very same kinds of disabilities living in the community with the proper support. The idea that they are too disabled, too involved, too medically fragile to live in the community doesn’t hold up any more because we have the same kinds of people in other states living in the community.

Q: Who are the people who work in these places, and how are they paid, trained and supervised? Is that part of the problem?

Curtis L. Decker: These are state workers, and I assume they go through the same kinds of civil service procedure when they’re hired as everybody else. They’re unionized, so the other thing that happens here is often that when they’re suspended or disciplined for these kinds of abuses – well this situation is so outrageous that it sounds like some people are going to get clobbered – but often what will happen is that when they’re suspended or fired,  their union will represent them in a state procedure. We’ve had lots of experiences in the past where people are reinstated. Of course in this case, they’ve actually got videos. But so many times you have the incident, you have the injury, and what we get from a lot of local law enforcement people is, oh, well, these aren’t good witnesses. They may be nonverbal.

So an awful lot of abuse in these facilities goes unpunished and unpenalized because there’s just no way of proving it. In this case, they’ve got video, so hopefully they’re not going to need the person with intellectual disabilities to actually testify.

Q: There are an estimated 4.5 million Americans living with intellectual and developmental disabilities. What should their families and advocacy groups do to try to put an end to abuses like those we’ve been talking about?

Curtis L. Decker: There are several things. They have to be organized, and there are fortunately organized groups like The Arc and United Cerebral Palsy. They’ve got to certainly work with those groups to impact on policymakers to change these facilities, downsize them and create quality communities.

They’ve got to be very vigilant of their ward or their child. They’ve got to be able to call agencies like mine to alert us to what they see, if they see their children bruised or beaten or whatever. They’ve got to do a whole variety of things to make sure their kids are safe.

Q: And what about the families whose children may not be living in institutions, but may have similar diagnoses, or who may be on a waiting list for adult services but living with mom and dad? What should those families do?

Curtis L. Decker: We’re working with groups in Washington to try to create community services for people on waiting lists, or for people who have kept their kids at home and have not let their kids go into institutions. The states in a lot of places have gotten off the hook. They haven’t had to spend money [on adult services] because parents have kept their kids at home.

So now there is a huge problem with aging parents. We have adults with intellectual disabilities who may have lived in the community for 50 years. But now, because their caretaker may be aging or dying, they may have to go into an institution, where they never lived in one before, because there’s nothing in the community for them.

The incredible irony is that even if you’ve lived in the community all your life, there may be no other place but an institution for you if we don’t develop this community system. The system has to be developed not only for the people in the institutions, but also for the people who are at home, the people on the waiting lists, the younger people coming up.

It’s a crisis. And the last thing we want to do is to have people have to go into the institution so that they can come out of the institution … to have to go into the institution so that they become eligible for community care.

See also: Texas Senate OKs bill to protect residents of institutions

Earlier posts here.

(Photo from NDRN.org)

3 Responses to “Hot topics: Curtis L. Decker on Texas institutions”

  1. Bill Willhoite Says:

    How concerning! My wife and I are caregivers for a cousin who has Down Syndrome. We have been doing this for more that 10 years. We have been discussing alternatives to her care since we are in our mid 50′s and need to plan for the future, both her’s and ours. Just as we were beginning to seriously look into this, the story breaks and continues. We live in Texas and it is quite disheartening to think that an institution may be our only alterntative.

  2. terri Says:

    In eldercare the hot topic right now is ‘culture change.’ The process of creating smaller, person-centered human habitats where individuals and their carers thrive together.

    The DD world needs to walk that path also.

  3. Nancy Banov Says:

    Without the evidence produced by the video on the cell phone, this abuse would not have surfaced. What about placing video cameras in all residential facilities in the common areas? At least the prosecutors will have the evidence they need to either exonerate or prosecute the abusers.

    Are there states that allow cameras? Any precedent for the use of cameras other than nursing homes? I believe this is a tool that advocacy organizations could promote as a deterrent to abuse and as a witness as well.

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More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

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