People with a learning disability

People in this client group, and their carers, have to grapple with a big gap between the legislative framework, and the current policies being rolled out under government guidance to health and local authorities.

The legislation is arcane, paternalistic and aimed at ‘management’ of people with learning disabilities, although it gives such people certain legal rights, flowing from the status of being disabled. We set it out below, in summary form.

The guidance (Valuing People) is modern, forward thinking, scrupulously inclusive, and aiming to be driven by the priorities of the client group itself. The guidance is statutory guidance under s7 LASSA and must therefore be complied with unless there is a very good reason for departure.

Mental Capacity

Learning disabled clients are often assumed by professionals and those who care for them on a daily basis to lack all capacity, and not to be entitled to make choices, because those choices are not seen to be sensible choices.

This is not the correct test in law, and capacity required for one sort of issue will be greater than for another; people are assumed by the common law to be capacitated, until the contrary is established.

Both legislation and case law support this enlightened approach – for instance, a person with moderate to severe learning disabilities will still be able to assert a right to choose where to be accommodated, (subject to suitability, etc) under the Choice of Accommodation Directions (see the Kent County Council ex p Kim Salisbury case), and yet how often does it happen in practice that this is explained and facilitated?

Learning disabled service users count as disabled under the National Assistance Act test of having ‘a mental disorder of any description’. This is not necessarily mental impairment within the meaning in the Mental Health Act, but that Act’s definition of ‘mental disorder’ would underline the status of a person with a learning disability as ‘disabled’, for it includes ‘arrested or incomplete development of mind’. The status is of central significance in establishing legal rights amongst this client group, however unpalatable it may seem to be advocating the stereotyping of a wide range of persons under one label. This is because people who are disabled have been given the benefit of a statutory duty, and not a mere discretion, under the Chronically Sick & Disabled Persons Act, so long as they have sufficient mental capacity to be able to have a place of ordinary residence. Duties to provide that which is assessed to be needed, are hard to find in social care law, and should not be disdained.

People with a learning disability, since it can count as a mental disorder, are also favoured by the wording of statutory functions in the National Health Service Act 1977 schedule 8, and the accompanying guidance in LAC 93/10.

They benefit from being included in the client groups to whom a duty is owed under s21 of the National Assistance Act as well. They are the focus of the government’s extension of the Direct Payments scheme signalled under the Health & Social Care Act. And because many are physically well and able-bodied, they may be helped to use the Supported Living Initiative in independent sector housing.

Guardianship is available as an authoritative framework for clients with a mental impairment, but only if it is associated with seriously irresponsible conduct or abnormally aggressive behaviour. The professional culture which embraces the social model of disability is uncomfortable about subjecting people with learning disabilities to a regime which is regarded as disempowering. But we think that guardianship can be used benignly for those with moderate to severe disabilities, and indeed, more constructively than heavier handed intervention when behaviour gets too challenging to manage in a freer setting.

Sensitive Adult Protection work will be particularly important with this client group but it is not able to be put to good use in delivering the government’s aims, without commitment to care planning and commissioning of innovative service packages to maximise autonomy.

Carers and Conflict

People with learning disabilities have not always been helped to assert capacity, and neither have advocacy services been consistently provided. At the same time, this client group will very often have very articulate and determined parents and carers to speak up for them; in turn, however, their views may be at odds with the capacitated choices of the very people at the centre of the service provision function. The authority responsible for implementing the enlightened Valuing People approach often ends up ‘negotiating’ with a carer who on the one hand has done a phenomenal job of caring for a person, throughout childhood and adolescence, but who on the other hand now wants and expects domiciliary support and future planning – sometimes on their terms, and not necessarily from an objective assessment of the service user’s long term needs.

In the real world, we think it is inevitable that the financial saving which parent carers are facilitating for the authority, in continuing a caring role, is bound to be significant in relation to where the balance of power lies in those negotiations; and this must be guarded against by the professionals involved in care planning, so that the service user remains at the centre of the process.

The Valuing People Strategy

The guiding principles for government policy in this field are independence, choice and inclusion on a cross-governmental basis, from birth to death. Interestingly, the guidance asserts that adults with Asperger’s or higher functioning autism should not be precluded from using learning disability services – which is code, we think, for prohibiting exclusion from assessment, of persons merely by reference to a known IQ level of something around 70 -73.

Given the emphasis on inclusion, we find it strange that learning disabled people are excluded from the ambit of the guidance as to NHS continuing care. If a learning disabled person has a continuing care health need, it seems bizarre that Health bodies could contend that these people are in a special category and not entitled to be considered for continuing care. We do not see how it can be assumed that people with a learning disability will be confined to that client group alone, and not have a dual or more complex ‘diagnosis’.

In any event, all over the country, Learning Disability Partnership Boards should now be established to steer through local action plans for implementing the Valuing People strategy. These Partnership Boards should be chaired by a senior local government officer or Member, and interests thereon should be drawn from health, housing (ie District Councils as well as Counties), education, the employment service, and Jobcentre Plus offices. Links with Connexions Partnerships, Supporting People teams and the Benefits Agency and Local Learning Partnerships should be fostered. People with learning disabilities and carers must be full members of the Boards, and providers and voluntary organisation are to be represented. The government’s aim is to ensure continuity of care and support for learning disabled young people so as to encourage participation in education, training or employment.

Priorities for service changes are being funded by an injection of £22m revenue and £20m capital spending. Capital and revenue plans for the Development Fund money may only be used where deployed as part of pooled funds under the Health Act flexibilities. The priorities are advocacy services, support schemes for wider use of direct payments, moving remaining residents of long stay hospitals out of such settings by April 2004, local housing strategies for people with learning disabilities, modernised day services, and person-centred care planning.

With regard to Direct Payments, under the provisions in the Health & Social Care Act coming into force in April 2002, councils will be required to make direct payments where an individual who requests and consents to one being made meets the criteria.

The implementation guidance for Valuing People requires that special policies are expected for excluding people from services. These are to cover

agreed criteria against which to consider the propriety and necessity of exclusion

protecting the identity of individuals who are being excluded

arrangements for notifying exclusion decisions to joint boards,

procedures for arranging alternative services, based on a person-centred approach

monitoring the number of exclusions in this client group


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