I heart someone with autism

Autism Community

A community for people affected by autism

Previous Entry Add to Memories Share Next Entry
Institutions and Group Homes
knottedgibberis wrote in autism
Hello everyone!

After reading a few recent posts here, I just wanted to say something about the topics of instutions and group homes. I'm an autism behavioral therapist, working with several children on the spectrum while pursuing a degree in special education. I also have a part time job working at a group home with a man who has autism who is in his mid 40's. I love the people I work with, and I would do anything to ensure their saftey and to help them learn to cope with their behaviors. I'm writing this to stress that institutions at times may be necessary, but they are not necessarily what many assume them to be.

In past years many states have moved to close down state facilities (or instiutions.) While instutions have been given a bad name, it is important to remember that most of these issues took place decades ago, in the 70's and earlier. It's also necessary to remember that only a fraction of institutions have had issues with residents being abuse or neglect. There are very strict regulations that govern institutions today regarding treatment for behavioral issues, nutrition issues and length of stay (most institutions have a goal of community reinvolvement for residents within 90 days.)

In the fall I was placed at a school located inside a mental helath institution for several weeks as part of a practicum placement for the special education program. The children there obviously had severe behavioral issues, and were there to learn how to cope with these issues. The teachers and staff at the institution did a great job working with these children, and everything they did was to help them learn to better function in the community. While most of these children were on medication, it was necessary as they were a danger to themsevles and others on a daily basis.


I'd also like to state that group homes and residential based care facilities (RBCF) are a completely separate entity from institutions. The same goes for group homes as for institutions-not all are alike. While some have had issues with neglect and abuse, most HAVE NOT. Again, there are regulations regarding everything, and training for workers at most group homes is extensive. Many group homes strive for their residents to learn how to live independently with as little as support as possible.

It's important to realize the only way to know what's right for your loved one is to be sure that you do your research. Ask lots and lots of questions and ask to visit the home on several occasions. No group home or facility should refuse to let you visit or answer questions unless there are confidentiality issues (and there's usually a way to get around those.)

I hope this helped to clarify a little for some of you. I think that everyone here is great, and I am amazed by the dedication you have to your children and sibilings. :)

Just to sort of add to this...I used to work at a group home. I spent the first 6 weeks working there in training. We learned alot about what to do, how to treat the kids, what we were allowed to do or not do. We were required to get this training every year. Group homes are not all bad, sometimes they are good things for the children. The point is finding out what's right for your child.

Please note that the treatment options put forth by group homes and institutional settings are NOT what some people agree with as the appropriate way to deal with autistic individuals.
The other thing you have pointed out is many state supported facilities for individuals living away from their families are quite safe and decent, however the primary providers of paid care for individuals who are unable to live on their own are private. Many of these places recieve state funding in the form of vouchers but quite a few do not and therefore they operate in quite a different manner.

That was the point of this entire post. Not all are alike, they can differ greatly. However, it is important to remember that while there are bad ones, there are just as many, if not more good. Any facility that you look at when considering placement of your loved one should be researched extensively, as they are all different.

It doesn't clarify much for me, because what you're saying are the exact misconceptions that allow the abuse and neglect to go on totally unchecked all the time. Laws don't make it stop. Claiming that things are happening to people because they're a "danger to themselves and others" doesn't make it stop. Prettifying institutions and making them smaller (i.e. into group homes) doesn't make it stop, nor does claiming they're not really institutions anymore. Nor does assuming that the worst abuses in institutions are ones that you can see (which most people who've actually lived in them can tell you, is simply not the case, most of us would far rather be beaten up or neglected than a lot of what goes on in them). I've been watching "This all happened in the past" go on for years now, and some of my friends have been watching it for decades, as "the past" creeps steadily nearer and nobody ever seems to get that things haven't changed all that much except the people who won't be believed (the people who live there). All this post has done is read like a Top Ten Institution Myths list.

Oh, and, the idea that when problems crop up in institutions, it's because they're individual problems with individual people or institutions, is another myth. So is the one that says institutions keep people safe.

Amanda,

I have seen you post on several other forums, and I have always respected and enjoyed reading your opnions, and about your experiences. I had written a quite different reply, and now knowing where you're coming from I've changed some of it. I'm sorry that you have had these experiences in instutitions.

I have worked with a child who is giving himself concussions by self abusing 275 times an hour, well over 4,000 times a day. I've worked with a family where the parents have to sleep in shifts because they are afraid that their child is going to injure or kill them or one of their other children.

These children need help. And unfortunately, the only place they are often able to get it is in a facility such as a mental health institution. This may be because their parents are unwilling or unable to help them, there are no resources in their community or for a whole slew of other reasons. These children have such serious behavioral issues that they are no longer able to be helped in the community. And I hope that you realize out of home placement is the LAST step any system will take.

Like I said before, all systems are different. All institutions are different. I still believe that most issues differ from facility to facility. I know that not everyone involved in these places is in it for the reasons they should be. And I do realize that abusive situations take place that many are not aware of. But it is not fair for you to make the accusation that this takes place EVERYWHERE.

I realize that it's almost pointless to try to argue this with you, as we both have quite different views on this issue. I hope to read more from you on other topics, but I'm done discussing this one for now.

Abuse in institutions doesn't occur because of "bad people" for the most part, it has to do with how any person responds to the power structures. And the worst abuse in institutions is not getting beaten up or something like that, it's a kind and level of degradation that goes on that is often invisible to the people engaging in it (and probably, from the sound of it, totally invisible to you).

I'm sure if you've read enough of my postings you'd know that I've given myself concussions in the past and could pass the 4000 mark in terms of head banging in a couple of hours (continuous headbanging at least once a second, do the math), and don't need to be talked to as if I don't understand what extreme behavior is. I don't think this warrants institutionalization. I don't think institutionalization in these circumstances would warrant being described as "help". And I have never heard of anything useful that can be done in an institution that cannot be done anywhere else, and usually better somewhere else.

I used to know a guy who was infamous for destructive behavior that probably goes well beyond a lot of the kids you're talking about (just as mine has at times without an institution spontaneously and magically growing around me). He had his own house and full behavioral support in the community. Why? Because the institution he'd been living in got sick of him. They got sick of paying for replacing all the objects and furniture he damaged, so they stuck him in a supported living program in his own house with full-time staff. He was a lot happier, and got a lot of medical problems treated for that matter that had been ongoing for some time.

It is fair, based on the data I've seen, to make the accusation that this stuff takes place nearly everywhere. The reality is almost diametrically opposite to how you present it. The destructive aspects of institutionalization are incredibly uniform place to place (decade to decade, even country to country) and it is very rare indeed that you find a place with people who are aware of it and able to overcome it (they do exist). I have spent a good deal of time researching this, and am not just speaking from my own experiences. There can be good individual staff, and good particular experiences, this does not make a place overall good or non-destructive or safe. The overall tendency of the structures of these systems is to lean towards destruction. If you don't think it's there, you're probably not fighting it, and probably contributing to it unawares (from what you have said I'm not even convinced you know what is destructive about institutions, but are focusing on the lurid horror stories, rather than the way they insidiously warp the minds and lives of both staff and inmates).

Oh, and I'm not putting this here for you, I'm putting it for the benefit of all the people who might be lulled into believing these things are safe and happy and non-destructive and everything's changed since the (fill in the decade that keeps moving closer to the present).

Abuse and Neglect of Adults with Developmental Disabilities

Chapter 1: The Nature and Extent of Physical and Sexual Abuse Involving Individuals with Developmental Disabilities

A. Frequency and Severity of the Problem

Although violent crime has declined in the United States over the past several years, people with developmental disabilities remain at disproportionately high risk for violent victimization, abuse and neglect (Petersilia et al., 2001). While the scientific evidence continues to be limited, international studies from Canada, Australia, Great Britain, and the United States have documented high rates of violence and abuse affecting people with disabilities (Ibid.). Experts conservatively estimate that people with disabilities are at least four times more likely to be victimized than people without disabilities (Sobsey, 1994; Toronto Star, 1990). Individuals with an intellectual impairment are at the highest risk of victimization (c.f., Sobsey & Doe, 1991).

Some studies estimate that close to 80% of women with developmental disabilities have been sexually assaulted at some point in their lives (Sorensen, 2002; Lumley and Miltenberger, 1997). Other studies have found the rate for sexual assault was anywhere between 2-10 times higher for people with disabilities when compared to people without disabilities (Wilson & Brewer, 1992; Baladerian, 1991; Muccigrosso, 1991; Westat Inc, 1993)...

(And so on...)

:-(

Please read all of Chapter 1 at the very least.