Category Archives: Health interface and hospital discharge

Who are people with a learning disability and/or autism?

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”

Which council should be buying the advocacy input for “out of area” clients?

On my travels doing training, I am being told that when a council telephones an out of area advocacy provider, because the council has a client in that other area, who needs advocacy, the organisation is often saying “No, we are not allowed to do advocacy for you – we are tied to doing it for this council, the one who is paying us.” Then the council in need says “Well we would pay you, of course – but we need a local advocate” the organisation still says “No, it’s in our contract – we can only do it for the local council”.

Clearly this is madness in light of the Care Act policy. It isn’t co-operation as between councils; it ignores the freedom of the advocacy organisation – unless wholly in the financial control of the purchasing council (which would not be terribly impressive from the ‘independence’ perspective!) – to sell services to whomsoever wants to buy them; and it scuppers the provision of mandatory advocacy services  – or makes it cost twice as much, in times of austerity.

What does the guidance say?

Continuity of care and ordinary residence

7.29. The local authority which is carrying out the assessment, planning or review of the plan is responsible for considering whether an advocate is required. In the case of a person who is receiving care and support from one local authority and decides to move and live in another authority, the responsibility will move with the care and support assessment (see chapter 20).

[that bit of the guidance needs to say – we feel sure – “…if the person is simply moving to ordinary accommodation, of their own volition, and not taking up a place in specified accommodation as a resident or a tenant, through the auspices of care planning done by the council that USED to be responsible – for all of those people will be able to assert continuing links with their old council.”]

The guidance goes on:

For a person whose care and support is being provided out of area (in a type of accommodation set out in the section on ordinary residence) (see chapter 19) it will be the authority in which the person is ordinarily resident.

[my comment here is that that is at least consistent with the legislation, because it is underlining that living out of area under a care plan can mean that it is not the authority on the spot which will be liable to pay; and the advocacy obligation should of course go with the authority that is responsible.

But it is not so helpful to people wondering what should happen when a new setting elsewhere than in the place where they are currently living has been found or is going to need to be considered, due to care planning concerns or where a change of status needs to be acknowledged: for instance, from a long term rehabilitation placement, paid for by the NHS out of the person’s original area, not yet counting as CHC, and now perceived to be coming to an end.

My view, applying general, and Care Act principles, is this: when a person is provided for by the NHS – wherever that happens to be – it does not change their place of ordinary residence for social care purposes. When a rehab package is believed to have achieved its purpose, the person in question is entitled to a proper review of whether they NOW need CHC to be commissioned, by the CCG where they have been GP registered (the rehab area, for this example) or whether they are NOW merely eligible for social care purposes or a split health and social care package – and the council where the person was ordinarily resident before the rehab, on general principles, will be the relevant authority for liaising with, UNLESS the person in question is going to make a move to ordinary accommodation somewhere of their own choice because they are not interested in living in specified accommodation. So the OLD council needs to make the decision about whether specified accommodation is needed, in most cases, if there is ultimately no CHC status awarded, and the OLD authority will need to make provision for independent advocacy.]

The guidance goes on:

Understanding of local communities may be an important consideration, so the advocacy/advocate should wherever possible be from the area where the person is resident at the time of the assessment, planning or review.

[My comment is that this only makes sense if the advocate is needed in the context of a settled placement or care arrangement out of area, not a situation where a person needs to consider acquiescing in, or other people need to do best interests decision making about, a move to one of a range of options somewhere else, somewhere other than where the person is currently settled.]

Finally, the guidance says this:

Consequences for local authorities

The local authority should have local policies to clarify the appointing of advocates:

  • from advocacy services out of their area that they may not have a direct commissioning relationship with (as it currently is with Independent Mental Capacity Advocate (IMCA));
  • for people placed out of area temporarily;
  • for people who move from one area to another following an assessment and care and support planning in which an advocate is involved (the same advocate should be involved wherever practicable).


[In all cases, if councils have expanded their IMCA contracts to provide for Care Act advocacy, and think that by so doing they have in some way reserved those advocates for use only by themselves, then I would have to say that I think that the commissioning advice in the Guidance would produce a system that would not be fit for purpose. A council with out of area responsibilities needs to be able to commission Care Act independent advocacy from organisations or individuals on the spot where the client is, or in the area where the client is considering a range of options and needs local insights. Anyone who has worked in social care for a long time will know that charging for services provided by one council ON BEHALF OF ANOTHER which is properly liable, is a commonplace part of the system, based on the law of agency].

Comments about other ways round this hiccup in the thinking, would be most welcome.

Why we’re still nowhere on getting autistics out of Assessment and Treatment Units and back into the community (2)

Placements are often justified on the grounds that behaviour which challenges needs to be addressed before community living is possible. But for many autistics this is backwards! Behaviour is communicative. Common causes of behaviour which challenges, in autism, are frustration and distress, due to difficulties with:
• communication
• uncertainty and unpredictability
• sensory issues

Most staff working in care have had little or no good quality autism training. “Behaviour management” typically focusses on reactive management and restraint techniques! It is little wonder that autistics stuck in these situations display distress in such an adverse environment. In institutions individuals are typically subjected to:
• change with little or no warning
• little control over their environment
• a highly unsuitable sensory environment
• constant interaction and demands
• very limited access to people with whom they can communicate effectively (e.g. family) or appropriate support for communication (e.g. AAC technology)
It is hardly surprising if this results in behaviour which challenges.

Effective training of community-based staff to enable them to actually understand and anticipate an autistic perspective is essential. We need to move away from ineffective and damaging “reward and sanction” reactive approaches to behaviour management. Creating workable community support is possible. It isn’t always cheaper immediately, but it is in the long run and this should be very motivating to local authorities and trusts. A good starting point is to look for providers who take an autistic perspective seriously and make use of the autistic community as a source of knowledge about how seeing the world from an autistic point of view can help enormously. Most behaviour which challenges can be prevented and avoided – but institutions are completely the wrong place to do it.

Community provision can work but only if it is staffed by sufficiently well trained and supported staff who have a clear and deep understanding of autism on a practical level. “Awareness” courses are not enough. Learning about the triad of impairments is not much use when faced with a distressed autistic who can’t use speech to tell you what’s wrong. The latest “products” on sale from the autism industry are also of very dubious value – check out first whether they are really as evidence based as they sound – there is a lot of “neuro”-rubbish being talked out there. Exercises to retrain developmentally immature reflexes are little help when faced with an autistic adult head-banging to the point of bleeding. Creating an autistic friendly environment, addressing communication, autonomy and sensory needs can be a good start to proactive behaviour management. But community staff need to have confidence in their skills and knowledge to be able to do that. It isn’t going to happen more widely until the entire social care sector begins to learn enough about autism to really understand that autism is a fundamentally different way of being and approach the needs of autistics with fewer assumptions and an openness to those different ways of thinking and being.

I’m aware of a few providers doing some fine work in this area, but we need more. We also need more willingness from local authorities to think outside of the box and consider bespoke packages with sufficient funding and support for training to ensure good quality PAs equipped with real world autism skills.