Who are “people with a learning disability and/or autism”?
The National Implementation Plan for Transforming Care, published recently, raises more questions than it answers about how the good intentions about closing hospital beds and improving community provision are going to be brought about in the real world. The jazzy PCP diagrams, co-produced “National Service Model” and graphs projecting falling inpatient numbers are aspirational, yes. But are they really going to produce change?
It seems to me that the key is whether community provision can be sufficiently improved to prevent admissions in the first place (as well as providing a viable discharge plan for those already there). So what’s the plan?
Mostly it seems to be founded on the solid ground of Positive Behaviour Support.
So long as this is truly rights-based and well implemented so far, so good.
But there, unfortunately, the good news comes to an abrupt end. Because all this good work is aimed at meeting the needs of “people with a learning disability and/or autism”. This term is used, without variation, throughout the report.
The report argues that “people with a learning disability and/or autism” are a “highly heterogeneous group” and that “Some will have a mental health problem which may result in them displaying behaviour that challenges. Some, often with severe learning disabilities, will display self-injurious or aggressive behaviour unrelated to any mental health condition. Some will display behaviour which can lead to contact with the criminal justice system.”
But never, not once, are autistic individuals referred to separately and distinctly. At no point is it considered which, if any, of the described issues or behaviours might be directly or indirectly related to autism itself and the relevance of that to effective behavioural prevention/management. At no point are autism and intellectual disability disentangled or dealt with separately.
Of course they can and do co-occur. But the behavioural issues which underlie the presence of these individuals in overly restrictive settings do not occur independently of whether or not an individual is autistic. Behaviour is communication. And autistic people communicate very differently.
It seems to me that no amount of person-centredness or positive approaches to behaviour are likely to make sustainable difference on the ground unless they are accompanied by vastly improved autism knowledge and understanding amongst those supporting those autistic individuals who make up a very substantial percentage of this group.
What percentage I hear you ask? I can’t tell you, because the statistics only count … yes, you guessed it … “people with a learning disability and/or autism”