Supported living, or ‘hidden institutions’?

by Neil Crowther

As Lucy Series explains here, the fundamental principle of ‘supported living’ (like its close relative ‘independent living’) was that people should have the right to choose where and with whom to live on an equal basis with others, with the support they need to do so. Crucially, to make this right a reality, access to the care and support a person needs must not be contingent upon accepting particular living arrangements. This separation was regarded as crucial to the process of deinstitutionalisation – not simply the closing down of long-stay hospitals, but the avoidance of the replication of their features in other forms apparently set in ‘the community’.

As the UN Committee on the Rights of Persons with Disabilities notes in its ‘general comment’ on Article 19 of the UN Convention on the Rights of Persons with Disabilities (living independently and being included in the community):

‘Both independent living and being included in the community refer to life settings outside residential institutions of all kinds. It is not “just” about living in a particular building or setting; it is, first and foremost, about not losing personal choice and autonomy as a result of the imposition of certain life and living arrangements. Neither large-scale institutions with more than a hundred residents nor smaller group homes with five to eight individuals, nor even individual homes can be called independent living arrangements if they have other defining elements of institutions or institutionalization. Although institutionalized settings can differ in size, name and set-up, there are certain defining elements, such as obligatory sharing of assistants with others and no or limited influence over whom one has to accept assistance from; isolation and segregation from independent life within the community; lack of control over day-to-day decisions; lack of choice over whom to live with; rigidity of routine irrespective of personal will and preferences; identical activities in the same place for a group of persons under a certain authority; a paternalistic approach in service provision; supervision of living arrangements; and usually also a disproportion in the number of persons with disabilities living in the same environment. Institutional settings may offer persons with disabilities a certain degree of choice and control; however, these choices are limited to specific areas of life and do not change the segregating character of institutions. Policies of deinstitutionalization therefore require implementation of structural reforms which go beyond the closure of institutional settings.’

The Committee goes on to note how:

‘Providers of support service often wrongly describe their service using the terms “independent” or “community living” as well as “personal assistance”, though in practice such services do not fulfil the requirements posed by article 19. Mandatory “package solutions” which, among other things, link the availability of one particular service to another, expect two or more persons to live together or can only be provided within special living arrangements are not in line with article 19.’

In England, there is evidence – both in official social care statistics and via grassroots reportage – of a growth in the provision of and numbers living in so-called ‘supported accommodation’ which, while maintaining a separation between landlord and care provider and according people who live in them their own self-contained property and tenancy, nevertheless make access to care and support contingent upon ‘congregate’ living arrangements. That is to say, disabled people requiring support are co-located in the same development and the development does not offer accommodation to people who do not require support. Such developments also appear, from reports (though yet to be substantiated by qualitative research), to be growing in size.

This planned development in Oldham exemplifies the type of development people believe to be emerging across the country: described as ‘supported independent living accommodation with access to some form of shared communal facilities’ it would involve the development of a new-build supported housing scheme for up to 20 adults with learning disabilities.   The council argues that this is in response to ‘a joint strategic needs assessment (that) identified that individuals with learning disabilities and complex needs and their families felt that they have a lack of housing choices available to them in the borough.’

In terms of official statistics, Between 2014-15 and 2017-18 there was a growth of around 5% in the number of working-age adults with learning disabilities receiving long-term support from social services. The proportion who were living in registered residential care homes and in nursing homes declined from 18% to 16%, while the proportion living in ‘supported accommodation/supported lodgings/supported group home’ rose from 18.5% to 22% (3.5%) during the same period.   There was very little growth in the numbers living in their own home with a tenancy (hovering around 10%) or who own their own homes (around 2%). The number living in ‘mainstream accommodation’ with family or sharing with others stayed at around 36% and remains the most common living arrangement for adults with learning disabilities in receipt of long-term support. Hence, supported accommodation would appear to be becoming the default living arrangement for those in receipt of long term support who do not live with family or in residential care homes.

Is this trend consistent with the UK’s obligation to ensure that disabled people enjoy the right to live independently and to be included in the community? A somewhat libertarian argument can be made that no one is obliged to live in such ‘supported living accommodation’.  However, Article 19 (b) of the UNCRPD requires the government to take steps to ensure that:

‘persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community’

In its general comment the Committee notes how:

‘Often, persons with disabilities cannot exercise choice because there is a lack of options to choose from. This is the case, for instance, where informal support by the family is the only option, where support is unavailable outside of institutions, where housing is inaccessible or support is not provided in the community, and where support is provided only within specified forms of residence such as group homes or institutions.”‘

It is ‘supported living accommodation’ that appears to account for much of the decline in people with learning disabilities living in residential care homes and the growth in the numbers receiving long term support. Moreover, if other councils follow Oldham’s logic, then ‘a lack of housing choices’ is being addressed via the development of new, large, congregate living arrangements. This comes on top of previous action whereby residential homes have been de-registered and refashioned as ‘supported living schemes.’   Such schemes can only be said to represent choice if other options are being generated.  There is very little evidence that this is the case

As Lucy Series has pointed out, the Care Act 2014 has unhelpfully muddied the waters where ‘supported living’ is concerned. The ‘choice of accommodation’ regulations define ‘supported living accommodation’ as:

(a)accommodation in premises which are specifically designed or adapted for occupation by adults with needs for care and support to enable them to live as independently as possible; and

(b)accommodation which is provided—

(i)in premises which are intended for occupation by adults with needs for care and support (whether or not the premises are specifically designed or adapted for that purpose), and

(ii)in circumstances in which personal care is available if required.

(2) The accommodation referred to in paragraph (1)(a) does not include adapted premises where the adult had occupied those premises as their home before the adaptations were made.

That is to say, for reasons unclear, the Act explicitly precludes a persons own home, or accommodation not designed or designated for providing care and support from the definition of ‘supported living accommodation’ (and hence from the specific right to choose).

Moreover, the regulations also say that

‘(3) For the purposes of paragraph (1)(b)(ii) personal care may be provided by a person other than the person who provides the accommodation.’

By saying ‘personal care may be provided by a person other than the person who provides the accommodation’ it appears to weaken existing case law that the care must be provided by a person other than the person who provides the accommodation, for this is the precise point of ‘supported living’. As Lucy says in her blogpost, in theory a person can strive to direct their personal budget towards being supported in accommodation of their choosing, but why would these regulations not re-enforce the right to choose where to live and the principles which underpin the idea of ‘supported living’ and Article 19 of the UNCRPD that access to care should not be contingent on accepting particular living arrangements? As Lucy has since suggested, these regulations might be a useful focus for the Equality and Human Rights Commission’s work on how far domestic law does or does not implement Article 19.

In conclusion, while the trend may be away from registered residential homes, it appears to be towards one in which people with learning disabilities that receive long term support either live in adulthood with their parents or will continue to live in demarcated, segregated settings where access to care and support is contingent on accepting a particular living arrangement and where there is (to varying degrees): ‘obligatory sharing of assistants with others and no or limited influence over whom one has to accept assistance from; isolation and segregation from independent life within the community; lack of control over day-to-day decisions; lack of choice over whom to live with; rigidity of routine irrespective of personal will and preferences; identical activities in the same place for a group of persons under a certain authority; a paternalistic approach in service provision; supervision of living arrangements; and usually also a disproportion in the number of persons with disabilities living in the same environment.’ On top of this trend is the huge and growing unmet need for support, with ever larger numbers living without any targeted financial or practical assistance (about whose lives we know very little).

For understandable reasons, much of the debate about the situation of adults with learning disabilities has for the past 10 years focused on incarceration and ill treatment in Assessment and Treatment Units. There are issues that are highly specific to ATUs, but at the same time ATU’s are arguably just an extreme manifestation or symptom of a much wider fact: that institutionalisation never left the lives of people with learning disabilities and that rather than continuing the long march to freedom, for those still eligible for care and support, we are instead – like many other countries in Europe and around the world – re-imagining it for the future.

 

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