Image Description: Shiny green push button with shiny grey border, “inclusion” in uppercase black letters across button.
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 there 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 person truly 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, not the family (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 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.