Thursday 28 September 2017

On housing and autism

The commentary published by David Mandell [1] provides some food for thought today pertinent to the on-going debate about "how and where to house adults with autism."

I've kinda touched upon this complicated subject in past blog posts (see here) but wouldn't dare think that any quick and easy solutions are going to be forthcoming on this important topic.

Housing for those on the autism spectrum (and beyond) has a patchy history across the globe. From the dark days of mass institutionalisation of those with psychiatric and developmental disabilities to moves towards 'care in the community', one can almost chart how society's views and attitudes to some of its most vulnerable people have seemingly advanced in a relatively short space of time. As Mandell points out: "institutions and the practices that occur within them were hidden from public view, which led to little accountability and serious abuses" reflecting how moves towards "greater observability and accountability" have probably been a primary driver in the switch in housing options.

But all has not been plain sailing in this transition. Many people here in Blighty remember those harrowing scenes filmed in places such as Winterbourne View, a place meant to be 'home' for many people, and with it, meant to provide all the trappings of home such as happiness, comfort and dignity; all sadly lacking in that case. There have, as Mandell also acknowledges, also been serious misgivings about how community services serve all those on the autism spectrum particularly when "caring for individuals with more profound impairments." A recent and relevant example of this can be read here. Balancing civil rights such as "inclusion and community participation" with basic needs such as actually finding suitable housing arrangements is a task still faced by far too many.

As I've said, there are no quick and easy solutions to ensuring that housing services meet everyone's needs. I do like the ideas that Mandell discusses in terms of a change of focus when it comes to housing arrangements in the context of autism, where "happiness and life satisfaction" and care quality are key over and above generic requirements such as inclusion and community participation. By saying that I'm not suggesting that inclusion and community participation aren't and shouldn't be important (see here for example) but rather that mandating them when it comes to residential options for those on the autism spectrum perhaps risks putting a 'one-size-fits-all' recommendation on what is supposed to be a personalised and tailored core issue. Living in the countryside or remote areas as quite a few people in the general population also do - "segregated farming communities" - should not for example, be viewed as 'a worse option' if and when someone is happy in such a setting and experiences a good quality of life. Even worse, that by housing people in "poor neighborhoods with few opportunities for community engagement" purely on the basis of concepts such as social inclusion, risks putting vulnerable adults in an even more vulnerable position (combining at a time when care resources and finances are already reaching breaking point).

And when it comes to residential placement for children when required [2] similar considerations also might apply... happiness, life satisfaction and good quality care and support. Simple.

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[1] Mandell DS. A house is not a home: The great residential divide in autism care. Autism. 2017 Oct;21(7):810-811.

[2] Benderix Y. et al. Parents' experience of having a child with autism and learning disabilities living in a group home: a case study. Autism. 2006 Nov;10(6):629-41.

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