Autism and residential placement

It's going to be a bit of an odd blog post this one as I muse over the results reported by McGill & Poynter* on the cost of residential placement for those diagnosed with an intellectual disability (ID). Odd because I'm going to be bringing in a little bit of politics - or at least UK Government legislation - and how this intersects with current financial policy. Hopefully you'll stay tuned though as I try and remain true to the aims of this blog (autism research and other musings).

I can't say I know a great deal about the provision of residential services for people with IDs. Through some contact with a local provider of such services for young people and older adults with autism, I've picked up snippets of what's involved and indeed the various processes and red-tape to be taken on board. All I'll say is that it's not as easy as you might think and indeed neither should it be in light of recent events at Winterbourne View here in the UK.

The McGill paper details a few important things:

• The aim of the study was to determine which factors most strongly contribute to the highest financial costs of placements for people with an ID.
• Bearing in mind the study was conducted in probably the most expensive part of the UK to live and work (South-East England), the average placement was estimated to cost £172,000 per year (about US$275,000). 
• To quote: "Young, male adults with learning disability, challenging behaviour and/or autism continue to receive very high cost residential support, often in out-of-area residential care". This was indicative of the fact that (a) quite a few people with IDs cannot be readily cared for in their own home, (b) indeed quite a few people with IDs can't even be cared for in the vicinity of where they were born and/are normally resident, and (c) part of the reason why residential placement is provided is because of the presence and impact of challenging behaviours (often with autism as a diagnosis). This last point on the impact of challenging behaviours fits quite well into the findings of Hodgetts and colleagues** (thanks Natasa) and how one facet of challenging behaviours in cases of autism, aggression, can have profound effects on families and caregivers (the possible causes of such aggression have been debated in a previous post).

This is not the first time that such provision has been the topic of scientific investigation as per papers like this one from Allen and colleagues*** who seemed to have arrived at similar conclusions with regards to the factors influencing the use of out-of-area residential care (autism, challenging behaviours). I don't think that this is a big surprise to anyone really - the more complicated and severe the presentation of symptoms, the greater the need for specialist, residential care and onward the higher the costs in order to provide that care. This outside of issues like aging and the question that no parent really wants to think about: what happens to my child when I'm gone?

I did say that I would bring a little politics into this post and so I am by introducing some of the provisions of the UK Autism Act 2009. I've briefly touched upon the Autism Act in previous posts (see here for example) and how as well as being the first ever disability-specific legislation in the UK, the Act road-maps what the State must offer for adults with autism including: (i) an assessment of needs, (ii) transition planning from childhood to adulthood, and (iii) planning in relation to the provision of relevant services.

It all sounds pretty good doesn't it? That and the changes to UK/English SEN provision, now (or soon) enabling parents to have a far greater say in how budgets for their child are spent and also getting rid of the cliff-edge that was being 16-years of age where services now stretch up to the age of 25 years for those in further education. Looking at all this on paper, I actually am very proud that old Blighty is taking a lead on these issues.

Not to rain on the parade however, but legislation and Politicians talking the talk is one thing, practical implementation and ensuring the funds are available to fulfil promises and commitments is another. Indeed a few stories in the press quite recently seem to unravel the purposes of why these policies have been set up. So this article in TES magazine paints a rather different picture of transition, and this article in the Guardian on what might potentially happen to specialist FE colleges in this brave new world. Indeed even some of the service providers are battling under-funding issues as per this fairly recent story (something I've heard about before). Of course I don't need to remind anyone about the current financial climate we are all faced with and for viewers (hopefully) reading this in 2020 or 2030, it is currently all rather messy. Councils and local authorities are cutting back and at the same time having to hold services and even improve them. Rather them than me.

What's the take home message from this post? Well, as per other posts, and without trying to turn people into statistics, autism costs in terms of provision and care, and the more challenging the presentation, the more the costs rise. Here in the UK we're doing pretty well in terms of legislation and getting the rules and regulations more into line with how the real world looks where autism is concerned and trying to ensure that particularly those with very complex needs are appropriately catered for by the State. I actually know a few families who have already put things like the Autism Act to good use with their children's future in mind. That being said, there seem like there are enough loop-holes (if I can use that term) present so that things still don't necessarily run smoothly when planning transition and specialist care if and when required.

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* McGill P. & Poynter J. High cost residential placements for adults with intellectual disabilities. J Appl Res Intellect Disabil. 2012; 25: 584-587.

** Hodgetts S. et al. Home sweet home? Families’ experiences with aggression in children With autism spectrum disorders. Focus Autism Other Dev Disabl. January 2013.

*** Allen DG. et al. Predictors, costs and characteristics of out of area placement for people with intellectual disability and challenging behaviour. J Intellect Disabil Res. 2007; 51: 409-416.

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McGill P, & Poynter J (2012). High cost residential placements for adults with intellectual disabilities. Journal of applied research in intellectual disabilities : JARID, 25 (6), 584-7 PMID: 23055291