How can we change institutional housing into a home?

April 28 | Guest post by Inclusion Geek
DSC_0003_1_72 - Indiana Farmhouse Near Peru Indiana
Photo by bterrycompton. Used under Creative Commons license.

I have a really cool job. I connect adults with all kinds of developmental/intellectual/cognitive disability labels to the resources and happenings in our community. The organization I work for has a strong mandate for inclusion – we reject segregation of people with disabilities as oppression. When I look for events I am specifically mandated to think beyond "swimming" and "gym" and "library" — would a schedule of events like that interest you? Some of the more exciting options I've explored lately include pride groups, medieval banquets, bike collectives, belly dancing, and a marijuana activist group, just to name a few.

I'm challenged daily to think outside of the box and actually explore the stereotypes that exist around the demographic I work for. I thought I 'believed' in inclusion before I started this job, but now that belief is a full-on life paradigm. Now, I just see a bunch of really cool people who deserve to be treated as individuals — not forced into segregated, stereotyped, simulacra lives.

You can volunteer, and they call it a job, but it's not really a job. You have a friend — but not really a friend. They are motivated in some false way to be in your life. And you have a house, but not really a home. Not your home, anyhow.

The CEO of the Alberta Association of Community Living speaks as a strong voice for inclusion of people with developmental disabilities, and I heard him speak on how we often create a kind of a parallel universe for people with disabilities. You can volunteer, and then you have a job, but it's not really a job. You have a friend — but not really a friend. They are motivated in some false way to be in your life. And you have a house, but not really a home. Not your home, anyhow.

Really, the shift away from mandatory institutionalization began not that long ago. There are still a number of institutions in Canada and the US today, but we've evolved into developing group homes. I always imagine living in a group home to be like living forever with a roommate you didn't choose on the world's smallest budget and while little to no control over most of the things you do on a daily basis. People's daily lives easily become run by schedules and compromises. It's what happens when bureaucracy takes over day-to-day life.

Families who are anti-segregation or who can't afford the added cost of contributing to an extra household often have adults with disabilities still living at home. The only weird thing about that is that it makes it just that much harder to transition to adulthood — what parent doesn't have a hard time letting go of their kids so they can make their own choices? Not living at home is vital to some of that coming-coming-of-age we all do.

The latest shift seems to be adults with disabilities living individually in the home of a family or individual who provides some or all of support that person needs. It's still pretty new here, so I can't really speak to the potential, although I do have some pauses about it. There is still huge potential for abuse and power-over situations, but at least there is usually some attempt for the person to have their own space and live as independently as possible.

I've heard of organizations that have spaces donated, or fundraised, for this purpose so rent and mortgage aren't barriers and the person can continue living in the space – THEIR space – as long as they like. This model seems like it would have some power, but there is still a need for good training and philosophy behind it.

I would love to be able to give that opportunity to someone — what if the long-time tenant who rented the other side of your duplex lived independently and received assistance on her terms? If you two are friendly, you might still catch up in the front yard, and laugh about how messy your houses are, and Facebook each other. You'd want her to have the option to make her own friends and pursue her interests.

How are homes different when they're offbeat because they help residents live more normally?

So many of our homes are offbeat because we've got a different lifestyle; we are burners hosting hula hoop parties all year long or we are strict locavores or we made a kawaii bathroom. How are homes different when they're offbeat because they help residents live more normally? People with impaired eyesight equip their homes with different clocks, braille knobs and other accouterments. People with wheelchairs install chair lifts. Some people have a home nurse visit. The people in our lives who, in the past, may have lived in sterile, clinical housing are now more and more acknowledged as having a right to truly make a home. What does an offbeat home for a person with developmental/intellectual/cognitive disability labels look like?

  1. As an an employment solutions facilitator (aka- job coaching) for adults with disabilities, and having worked and volunteer with children of all ages this article really hit home. You become part of teams that help facilitate dreams, be it employment or varying levels of independence, and what if places like the one you write about could be? What if places where varying levels of care could be accomplished without it being sterile? So many people feel so cut off from their community as it is..and institutions can bring that to a fuller effect. But a real home? That is something that last for a lifetime.

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  2. Very interesting take on a group home – that really puts things into perspective! I've spent time in nursing homes (in Houston TX area) visiting patients and really hate the way they are treated – herd them here or there, bring condescending bingo games now and then like they don't have more sense to do anything else, but above all, STICK WITH THE PROGRAM!!! There was no individuality encouraged that I saw, which is really sad. So now all that's left for them is wake up, dress, eat, do whatever activities are available, go outside for every smoke break, undress, get in bed, and ultimately die…

    Sorry to get on the soapbox. Bless your efforts!

    gina

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    • I was thinking about the similarities between other low-income (seniors included) groups and this while writing but didn't want to dilute it too much! Thanks for pointing out the connection!

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  3. Unfortunately no time for a full and thoughtful comment but two anti-group home group homes that are very interesting are:

    1) http://camphillvillage.org
    For adults with disabilities

    And 2) http://www.edenalt.org for senior care.

    Really good stuff to read for anyone interested in this sort of thing!

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    • See – I still see weirdness with things like Camp Hill. It's still segregated. it's still the idea that people "like that" need somewhere special and different to live and that they can't/wouldn't want to participate in the same kinds of things in similar ways to how you or I would. For example – I didn't need a special garden therapy to enjoy gardening, I joined the local gardening club.

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      • This reminds me of something I noticed a few years ago when I was living in the Chicago burb area. I noticed three or four subdivisions (a few of them almost village sized) that seemed to be marketing themselves to older citizens. Turns out, each community had those individualized options you mentioned. It was just a regular yuppie neighborhood (the kind with amenities and such, ya know), but if you wanted, they had in-home care ranging from someone just to stop by every so often, to full-time care if necessary. They had round the clock shuttle service too! And considering my Grandma's biggest pet peeve in her nursing home is that she can't go to the library whenever she wants, I can see how valuable that would be. The housing seemed so much nicer than my Grandma's units since it was clear their intention was to be a full community of individuals.
        My boyfriend's grandmother lived in a lovely area that had spaces for every price range. From condos to full on houses and yards, but everyone received the same care options through the neighborhood. It'd be nice to think my housing fee was going towards something so worthwhile.

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        • This sounds really amazing! We don't have as many gated communities like that in Canada, but I could see that being an excellent model.

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      • As someone who works as a service provider in group homes for adults and children for developmental disabilities, I have a slightly different perspective on group homes. I work in a small, poor, mid-western town with a mid-sized college in the middle of it. My company has 8 "community integrated living arrangements" homes and 1 children's group home. Our homes are interspersed throughout the town as part of their "integration" into the community. The only community interaction my clients experience is a weekly trip to a fast food restaurant for dinner followed by a trip to the big chain superstore in town. Sometimes, the higher functioning individuals will go for walks with staff or go to holiday celebrations in town, but not my girls. In my main house, my girls are lower functioning and their opportunities to be a part of the community are severely limited by offerings in the community, available transportation, their ability levels, and just how short staffed we are that day. Plus, if you live in a "one staff home", and some of your housemates don't want to go on an outing, it typically means none of you go. Three of my girls love going to the park, but one hates being outside so we can't go anymore.

        It is my personal belief that my girls, as well as other clients in other houses, would benefit from an retirement community type set up. If all of our houses were clustered up, vans would be easily accessible for staff to take the client on outings (we currently have only a few vans that are left at select houses, making spontaneous trips nearly impossible). If a house was short staffed and needed immediate help, staff pulled from another house would be on the scene almost immediately– not arriving 2 hours after the initial "I need help ASAP" call. Residents would be able to see their friends at other houses more often. We could look into a workout center and pool and playground and other recreational spaces that could be utilized by the residents daily (it is VERY difficult to find outing staff to take clients to the Rec and many clients would benefit from exercise). We could set up a community garden to encourage healthy eating habits, get the clients outdoors more, and give them real responsibilities in their homes.

        I understand the goal of community integration and believe individuals with differences should be a part of their community. But I am living in a town that makes no effort to make the community accessible to my clients. My clients don't have the necessary staff or transportation to leave their house for something other than Day Program more than once a week. A weekly trip to the store is NOT community integration. I believe there are benefits to designated housing communities for individuals living in group homes. It doesn't have to be entirely out on its own in the middle of no where, but having all the company's homes on the same block would have so many benefits. They can still be part of the town-wide community, but build their own community of friends and resources in addition to it, and (in my opinion) be all the richer for it.

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        • Thanks for your comment! Your right, that's NOT community integration, that's lip service at the very best! and it sucks and in some ways it's worse than having something more segregated that feels more inclusive on the surface.

          I would say – with all respect because I don't know your situation or what would/wouldn't work – that your solution sounds like you are trying to work with the current FUNDAMENTALLY BROKEN model of funding and philosophy to find something that kind of works for everyone. It sounds like a very different landscape to here in Canada and it's a good reminder that we're lucky (even if things are fundamentally broken here in many ways too!!!).

          As you said, all of the issues you identified as being problems are due to lack of funding and inclusive philosophy within your community. Are there parent groups or community living groups who also recognize the same issues you see? Sometimes when people come together and demand things change there can be real power…

          I feel so lucky to work in an organization that recognizes that doing that work of 'changing the world' is my main job – and not to shepherd around groups of people in mock-inclusive ways.

          Thank you for doing what you can to shift things… even just a little towards something better!

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  4. My boyfriend is disabled and we live off of his Social Security and my wages at my very part time job. We're constantly talking about moving because our area doesn't have much within walking distance and the community activities for the disabled are terrible. My BF can't drive so he's home all day with Facebook and video games to keep him company.

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    • This is a really great point – location and ability of the community to think about how transportation and resources are important for people is HUGE!

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  5. Thank you for being a proactive thinker! my daughter is disabled and while shes only 4 right now this is something i worry about and think about alot. What is the future going to be like for her?

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    • It is families that started many of the movements around inclusion – so hats off to you and the work you do – I know it's a constant battle.

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    • I know my mom worried about it when I moved out on my own – I'm visually impaired, and I think the idea of her half blind, half deaf daughter moving to New York City by herself was a scary thought! But I promise you, if you help your daughter find ways to adapt to the world around her she WILL succeed. I did, and so have many others that I know. See more in my below comment.

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  6. Thank you for writing this article. My husband and I are both Special Ed teachers (grades K-12) and we are often faced with questions from parents like, Will my child ever be able to live by themselves? It is amazing to know that there are people that care and services available to them as adults.

    Most importantly, thank you for bringing this issue to light, and thank you for all the work that you do.

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    • See below for my excitement that Special Ed teachers are excited about this kind of thing.

      I'm not a teacher (nor do I have any special disability training) but I agree… The fact that many people don't realize that the way things are isn't perfect ("oh but they have a place to live and funding for that isn't that a good thing? why wouldn't you be happy going from coffee shop to bowling to swimming day after day?") is a huge part of what motivated me to submit my post.

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  7. I'm a Developemental Disabilities and Special Education major currently, and this is something that I'm actually planning on touching on in my senior project. Why is it that we treat people with disabilities like they're at summer camp? Why do we need to have "special" places for 'them' to hide out? I wish more people thought about this.

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    • I'm excited that there are special ed people thinking about this – especially given the fact that the segregation of special ed classrooms is a huge piece of perpetuating the idea of something different being necessary for this demographic of people.

      If you don't already have this as a piece of your project, you might be interested to check out the Inclusive Post-Secondary Education movement, currently happening across Canada and is beginning to go global:
      It's existed in Alberta since the mid-80s, although the main website for info is currently being revamped, here's one of the University's:
      http://www.lethbridgecollege.ca/students-staff/index.php?option=com_content&task=view&id=1221&Itemid=466
      For main info about Alberta's model (the pioneers) get in touch with AACL.org
      In BC connect with http://www.steps-forward.org

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  8. thanks for such a great article! I have worked within the 'disabilities sector' for a few years now and am so disillusioned and frustrated with the empty mission statements and constantly knocking my head against a bureaucratic wall. As a 'lowly' care worker we are suppose to promote inclusion but only as far as the organisation and supposed social norms will allow. Rather than challenge social barriers, I found my job description and thus expectations leans (head first) towards bounding the people I support within those social barriers. Grrrr, sorry for the rant but thank you very much for your writing!

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    • I'm so lucky to be working in a progressive organization without all the bureaucracy! Good luck finding/starting something like that where you live!

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  9. I volunteered for a project at university to help people with learning disabilities into social situations. We ran "speed dating" and "fast friends" events but it seemed like we were saying lets encourage people with learning disabilities to make friends with similar people. I totally disagree with this thinking so quit the project.I agree with the post, an independent (as far as is possible) life away from the parental home is ESSENTIAL to growing up and learning who you are as a person. Thanks for the thought provoking words!

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    • It's exciting to hear that people are seeing those things from within something that on the surface sounds so progressive! Sometimes I feel scared that there are so few people out there that question that way of thinking…

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  10. I figured I'd through the name of L'arche out there: http://www.larcheusa.org/
    L'arche organizes homes in local communities, regular houses you'd in no way be able to distinguish from the Smiths next door. Once you are in you are in for life. You have a job and share chores within the house. Everyone sets their own goals through the year and has the support of the house in reaching them.
    I have volunteered with L'arche over the past three years and find it to be a place I can spiritually regroup. It's a powerful place I wish more people with intellectual disabilities had access to.

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  11. Very interesting post! I work for a place called Marklund (www.marklund.org). There are 6 houses, and 16 clients in each home. Inclusion is something that we strive for every day. However, it's hard. My clients are profoundly developmentally delayed, and operate at the mental age of an infant. Most are completly nonverbal, those that do know how to say words are very limited in their vocabulary. However, they all have their own way of communicating, and they lead very active lives. We go shopping, out ot eat, to the movies, to sports games and plays….basically everything and anything. Some of the clients participate in races (and even the Chicago Marathon!). The biggest challenge I see is the reaction that the general community gives my clients. When the facility opened, there was a huge uproar against having the facility in a residential neighborhood. I wish people were more accepting.

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  12. I am completely blind in one eye, almost completely deaf in the other, and I moved to New York City by myself.

    And it scared the pants off almost everyone I know. Granted, there are a lot of things that I require that have had to be done wherever I live. I need LOTS of light – and not just man-made light, but natural light. I require no stairs in my home unless if they are well lit, and any neighbor I have in a building HAS to be aware that if they leave the lights off on the front door, I legitimately cannot get into my own home. We're in the process of having that discussion with my neighbors right now.

    I put glow strips on every single lightswitch in my home, I have a system for finding dishes, and silverware. All my roomates (and my now fiance) have had to adapt to the way I do things. Sure, that's not entirely fair – and plenty of ex college roomies have REALLY hated that. But my experiences living with other disabled people have actually been pretty horrid. I think it's because we are "supposed" to be friends. Like everyone with a disability is the same. We're people, and not all people get along.

    I could go on about this forever – but I guess I'll leave it that many disabled people, in wheelchairs, canes, blind, deaf, autistic, do make it out in the world by themselves. It's just about finding the ways to make it possible!

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