Tuesday, 2 September 2014

Thoughts on Inclusion and Intellectually Disabled People

Thoughts on Inclusion and

Intellectually Disabled People

Inclusion for intellectually disabled people should just be a given.
Recently, in an internet  discussion group to which I belong, we were debating all things inclusion for intellectually disabled people.

Inclusion vs. Segregation for Intellectually Disabled People

It was an interesting experience for me, because I've never really heard people defend the argue the idea that moving toward community-based housing and employment and out of institutions, group homes and sheltered workshops potentially violates the ideals of person-centred planning, and that institutional residential and employment arrangements aren't segregated...that they are, in fact, a better option for intellectually disabled people than more community-based alternatives.

I was one of the ones arguing in favour of more inclusive practices when supporting intellectually disabled people which probably doesn't shock anyone. Out of the three of us "inclusion types" that were talking the most, though, I was definitely the moderate one. Maybe it's because I've worked with a lot of parents and seen how scared they are for their intellectually disabled childrens' safety once they leave the home, that the constant supervision of a group home or even a more institution-like setting (Ontario doesn't have institutions anymore, but I understand that other areas still do) becomes attractive. I can see the other side, while still firmly coming down on the idea that it's more desirable that all disabled people , including intellectually disabled people, be as much a part as the community as possible, and that institutions, group homes, and sheltered workshops tend to work against that.

The Argument Against Community-Based Placements for Intellectually Disabled People

But, said the people arguing the other side, what if people are more comfortable in those environments and they don't want to leave? You are taking away their choice. You are telling them, "Inclusion is the right way, and you'd better get on board, even if it means leaving your home/workplace and your friends and all the things that make you feel comfortable." It wasn't about segregation, they argued. It was about really listening to intellectually disabled people and what they wanted out of life.

And wow, did it ever take off from there.

We got into questions of whether people can actually make an informed choice if they haven't experienced the alternatives, whether social systems stream intellectually disabled people into segregated settings and when that starts if people do believe that it happens (I do believe it happens, practically from the time that a child is officially identified in school as having an intellectual disability), whether disabled people having other disabled friends is "inclusive", and medical intervention versus "warehousing" when a person does have to spend time in an institution. We talked about caregiver rights. It got heated, sometimes a little nasty. People were very passionate about their positions.

The other, less moderate gentleman and I tried to explain our positions on all this several times, but I didn't feel like I was being understood...I'd venture a guess that the people on the other side of the debate were feeling the same way, from the tone of the discussion, but it seemed to me that we were all ultimately working toward the same goals. I was puzzled as to where we were going sideways.

What I Do Know - How I Support Intellectually Disabled People in My Work

I'm not interested in fixing a situation that isn't broken to begin with, including moving someone out of an institution, group home, or sheltered workshop if they haven't indicated that they'd like to move and they'd like my help to do so.  There are some situations where, unfortunately, people have to move out of places because of issues related to safety and violations of rights, like when people were moved into community settings when institutions started to close in Ontario, or when medical issues arise that require specialized interventions that can only be delivered in a hospital or, say, inpatient mental health services setting, or when families are in crisis to the point where they can't care for an intellectually disabled family member anymore and that individual must by necessity take the first placement that opens and wait for a more suitable one.  These are tough situations, involving the health and well-being of the individual, and sometimes that has to take priority over whether a placement is community-based.

However, how can a truly person answer, "Do you want to continue living in a group home or live (or work toward living) in your own place?" or "Do you want to stay at the workshop or try to get a job somewhere else?" if they've never experienced anything but living in a group home or working in a sheltered workshop (or at least never had it explained to them that there are different ways that people live and work than what they've experienced and that they have to right, as citizens, to try these things if they want?) Maybe it doesn't happen tomorrow, because maybe there are skills that need development and supports that need to be put in place...maybe it takes a long time to work up to being ready to live independently...and maybe it even doesn't work the first time out because it's too overwhelming...

But intellectually disabled people should have the right to take risks, and it's not the worst thing in the world for them to experience disappointment. And you never know - what you think is going to turn out terribly (and I've been there in my work, when an intellectually disabled person that I support has announced intentions to do something and I've just wilted inside, thinking, "Wow, there's no way this is going to work") may actually turn out wonderfully for all involved. I've seen this happen too.

One interesting thing I noticed about this discussion was that sometimes it felt like each side was criticizing the other for the same thing:

  • There are too many rules and the individual doesn't get to make them

  • People fall through the cracks and that leads to bad service and potential abuse

I took two classes on person-centred planning for my Developmental Services Worker Diploma, and have been exposed to it as a philosophy of support for as long as I've been in this field (over half my life). I've never taken it to mean that it's about making choices for people, or even influencing them a certain way. Yes, it's unfortunate that intellectually disabled people (all disabled people) are at the mercy of whatever current trends are shaping the services that they use, and if that means that means that a person has to leave a group home or sheltered workshop (or move into a group home or institution setting if you're living in England, or even in Canada - loss of control is a theme for disabled people the world over, it just manifests in different ways sometimes), but when I worked with youth I told them:

"We'll talk about what your options are, we'll make a plan, and then we'll talk to the people who can put the plan in place. If you ever want to change the plan, just say so, and we will. This is your life."

Part of the process was, "If you don't like doing something that we've set up, tell me, and it doesn't go any further. It stops there."

The individual always set the course. Why wouldn't they? It was their life, not mine.

When families are involved, that kind of process is difficult.  It takes a bit of negotiation sometimes, particularly if the person was under 18 and not considered an adult. In the group discussion, I didn't get into how my first responsibility was to the individual (with some exceptions dictated by legalities around age). It didn't seem like a discussion that would be welcome among parents in the group.

I don't use a specific person-centred planning tool, but I use the methodology, and didn't understand the objections to it in the discussion.

And if you want to argue that people don't fall through the cracks and that abuse doesn't happen in residential settings, then I've got a long list of articles that you need to read.

I left the conversation when it was obvious that it was getting personal and not going much further, but not before I posted this:

I don't know whether it was this thread or another that I wrote about Special Olympics, but I'll say again that my experience of it is that intellectually disabled people get told, "This is a great chance for you to play sports" when some of them could definitely play sports on a level that would allow them to comfortably compete on a community league...certainly much better than I ever did before I acquired disabilities. I understand the reasons why people like SO, and it's certainly a valuable program, and even if people can play in community leagues and would rather stick with SO for their own reasons...go for it. But people have the right to know all their options, if they're interested in playing sports...that they have the right, as all community members do, to try community league play if they want, instead of having people assume that because they're disabled, they "belong" in SO and that it's the option they'd choose, so no others need to be talked about... but as far as whether people choose to associate with other disabled people, or non-disabled people, or a mixture of both, or hang out by themselves...not my call to judge their choices or to presume to tell them their choices are wrong. I just let them know what their options are and, if they want/need the help, assist them to set it all up (assuming I ever get work in this field again). Does that make sense?"

I think that there will always be some intellectually disabled people who require a level of care that's more institutional in nature than inclusion advocates like me would like, because of specialized needs. I also think that there are ways of increasing agency and self-determination within these settings for providers who are really committed to doing so, and that the population who really requires this level of care is smaller than we assume. The thing that really bothered me about the arguments against community based-supports was that they seemed to minimize the fact that intellectually disabled people have rights - not rights that can be ignored or tweaked because of the individual's disabilities to fit others' needs, but rights that they have by virtue of being adults in our society.

We need to get back to presuming competence and finding ways to allowing intellectually disabled people to make truly informed life choices, not letting ourselves be afraid of individuals potentially making bad decisions.  We need to be okay with the lives of people we support getting a little (or even a lot) messy as they learn about being a community member and the rights and responsibilities that come along with that.

Ultimately Agreeing, But Still So Different

The thing that we all agreed on this discussion? That disabled people in general and intellectually disabled people in particular should drive the discussion in which services develop and change, and that they should have as much input as possible into that change process. I feel like we all had a lot more in common than anyone would guess at first guess. Just drastically different ideas of what that should look like, which was perhaps the most frustrating thing of all about the whole discussion.



  1. This is definitely a tricky debate, and you covered the ground very fairly. That's hard to do.

    I think that one problem is that there are several "sacred cow" or "taboo" ideas that are very active, but we have trouble even discussing honestly. They have to do with:

    Parents' motives, some of which are understandable, but at times selfish, which we can't talk about because nobody wants to be mean to parents, and for good reason,

    The possible limitations imposed by actual intellectual disabilities, which those of us on the inclusion side have difficulty talking about convincingly,

    The possibility that having disabilities doesn't mean we should be 100% catered to or never challenged to do hard things,

    The fact (as you alluded to) that institutional models and settings do tend to become regimented and abusive, and concentrate everyone's worst motives and behaviors.

    That there is still a strong but now hidden motive in society to find programs for certain kinds disabled people that will "take care of them" in the sense of being able to forget about them without it bothering our conscience,

    That brick and mortar institutions are self-perpetuating in a way that individual services in the community are not ... they have to be staffed and funded at a certain level, so if only 5 people "choose" them, it's not enough and you have to "recruit" more, which messes up the whole notion of real choice.

    This is a transition time, and it won't happen smoothly. In the end, there will be far more choice overall than there was before. That's the bottom line.

  2. Great post, Sarah. Maybe part of what makes this discussion such a hot potato is that 'inclusion' has been abused as a concept and has often been an excuse for social services and education authorities to dump kids/people into inclusive environments with no support. So, for some, inclusion like segregation has become a dirty word. Of course we know that the ideal is for people to live in family homes, in vibrant communities where people can learn, play and grow. But often, for people with intellectual disabilities, communities can be very lonely places. I agree with you 100% that the interests and aspirations of the individual must be at the heart of planning and that relationship building must be very intentional. With those values firmly in place, I think a person has a pretty good shot at being happy.

  3. Sarah, here is a link bit.ly/1njioAy to our blog post about this subject. Obviously, as a sheltered workshop we have a strong point of view that is different from your’s, but I hope you will take a couple of minutes to read the perspective of an organization on the other side of this controversy. I enjoy your writing, and I have great respect for your opinions. Thank you.

  4. Andrew, you've got a better grasp on this than just about anyone I've ever talked to. Ever considered running for office? :D

  5. Hi Donna...yes, this is definitely an issue, and one that came up often in the discussion. It would concern me if I was a parent as well. I think that when planning is really approached with the person at the centre, with the support system determined to be just that - support, even if the person's decision isn't something that seems like it's going to bring them the closest to their goals - people tend to find their own place in terms of where they want to be on the inclusion continuum and, like you said, have a pretty good shot at being happy. I think that perhaps I'm moving away from blanket closing of some supports, like sheltered workshops (provided that they're run responsibly), in favour of letting people have options, at least during this transition time that Andrew talked about. But the way that we approach how people get/stay in them has to change...people need the respect of being told all their options. I'll have to think about this some more. Thank you for commenting!

  6. Thank you for posting this...I'd actually read it before, when I visited your website, and it did get me thinking. I think it's important to remember that just because general thinking is moving away from a service model doesn't mean that we should automatically indict all providers using that model. There are some sheltered workshops out there that are terribly exploitative. There are many others that aren't. Yours doesn't sound like one of them. And I can understand the reasons why, particularly if people have worked in those environments for many years, they'd be reluctant to move on. My main concern is if people realize that if they wanted to, they could - and then maybe the controversy around sheltered workshops lessens, because they become for more people what they used to be - places where people trained for jobs in the community, then left, and find other ways to enjoy the relationships that they cultivated in the workshop (which are very real and should be kept up) - coffee dates? Doing a community activity together? Maybe the world opens up a bit for everyone... But for me, it's the choice element that's crucial. I really do appreciate your comment, though, and thank you so much for reading. :)

  7. Heh! I just have the opinions, the responsibility I can do without!