The House of Commons Health and Social Care Select Committee’s recent report on the treatment of autistic people and people with a learning disability was right to describe the inpatient experience as “shocking”.
But as many individuals, families and support workers across the care sector will know, the fundamental issues in the current system mean that this state of affairs is far from surprising.
Indeed, despite countless reports and action plans in the decade since Winterbourne View, fundamental structural issues remain.
In particular, there is a critical shortage of community based crisis resources to prevent admissions in the first place. Patients are admitted without subsequent discharge plans, and funding arrangements further disincentivise discharging patients.
Indeed, as of last month, 2,075 people with learning disabilities and/ or autism were being held as inpatients within hospitals and Assessment and Treatment Units (ATUs) – including 1,175 people (57%) whose total stay already exceeds two years.
On top of this, there is still no consequence for those responsible for this ongoing failure – in stark contrast to those failed so desperately by the system.
Long-term detention is fundamentally a human rights issue
So yes the Select Committee’s report is welcome because it underlines the fundamental need to invest in the right support so that people can lead better lives.
But the report is also welcome because, above all, it recognises that long term detention is fundamentally a human rights issue.
Moreover, as the report sets out that – no matter how well managed or supportive inpatient settings might be – community support is the only model of support that empowers people to lead independent, free and fulfilled lives.
Dimensions has long pointed out the perverse incentives that arise in the system of inpatient detention. In particular, current funding arrangements retain funding in the wrong parts of health and care services, making it difficult to provide the much needed services into which people should be discharged.
Furthermore, there are limited safeguards in relation to the independence of clinicians making decisions about discharge from services that ultimately derive their income from the admission of people into their care.
That is why I am so pleased that the Committee rightly recommends new measures to reverse these incentives and create obligations that pay due regard to the rights of people detained.
Weekly reviews of the appropriateness of admission
But what else does the Committee get right when it comes to reforming the system, and what more can be done?
To begin with, Dimensions supports the underpinning principles of the “Trieste Model” cited by the Select Committee, particularly reform to ensure that inpatient detention can only ever be used as a necessity and to introduce safeguards to reduce an individual’s length of stay to an absolute minimum.
In addition, the Committee’s recommendation for weekly reviews of the appropriateness of admission for people who have been detained for longer than three months would support ongoing scrutiny by families of clinical decision making.
Furthermore, the introduction of a duty to establish community support within eight weeks of admission no longer being appropriate – or pay compensation for a breach of human rights – would create much needed accountability within the system.
But beyond this, we feel there is an important point which must not only be articulated but be recognised and embraced when it comes to reform.
Specifically, long term detention is not just an affront in itself, but also sustains wider inequalities and lack of inclusion more generally for autistic people and people with a learning disability.
Whilst we have always recognised that, for a small number of people, a limited admission to a specialist inpatient service might support better outcomes, we have an enduring commitment to providing high quality support to people in their communities, where they can be active citizens and lead the lives they want to lead.
That’s why we welcome the Committee’s reference to research carried out by Dimensions in relation to the experience of autistic people and people who have a learning disability in primary care and the need for training and development to ensure that people can have their health and wellbeing needs met with the right adjustments and an inclusive approach within their communities.
Indeed, in our response to the UK Government’s White Paper on reforming the Mental Health Act we have consistently underlined that legislative reform will not succeed unless it is accompanied by investment in the right support.
Most importantly this means investing in the services that prevent people from reaching a level of crisis that might necessitate detention.
And as part of this, securing better lives for more autistic people and people who have a learning disability demands that housing and support are consistently available, close to people’s loved ones.
All of which is why as well as calling upon Ministers to act on the recommendations of the Select Committee’s report, we also want to see progress in two other areas.
Removing barriers for disabled people and creating a fully inclusive society
First, we will carry on – and hope others across the sector will join us – emphasising the importance of the abovementioned investment, especially in training, development and housing. And as the UK Government introduces legislation to reform inpatient detention for autistic people and people who have a learning disability, now is the time to commit the money to make the legislation work.
Second, the UK Government’s National Strategy for Disabled People needs to be aired as soon as possible. If the UK Government is serious – as it states it is – about removing barriers for disabled people and creating a fully inclusive society, then I can think of no better way of showing it than revealing its strategy for doing so as soon as possible.
These two steps are not nice to haves. They are fundamental to ensuring equality and justice. Indeed, to coin a phrase, they would contribute towards “levelling up” the opportunities and life chances afforded to so many people in this country, many of whom have been so badly affected by this terrible pandemic.
Steve Scown is Chief Executive of Dimensions, a support provider for autistic and people with learning disabilities