The disability movement has for many years campaigned for a legal right to practical assistance for those who need support to go about their daily lives. While others talk of ‘care’ for ‘vulnerable’ people, we have made the case for a right to the kind of assistance, adaptations and equipment which enable disabled people to access the kind of life that non-disabled people take for granted. The right to choose when you get up in the morning, the right to assistance over necessary personal care, the right to the help needed to participate in family and community life and in society generally.
The first time that anything like this kind of right was included in British legislation was the 1970 Chronically Sick andDisabled Persons Act (originally a Private Members’ Bill campaigned for by Alf Morris MP). Section 2 of this legislation says that, if a disabled person is assessed as needing assistance, equipment or adaptations, then their local authority has a duty to make arrangements to ensure those needs are met.
This entitlement was strengthened in the late 1980s when further legislation was passed – the Disabled Persons (Services, Consultation and Representation) Act 1986 - to provide an entitlement to an assessment of needs covered under Section 2 of the 1970 Act. However, it took many years of campaigning and advocacy for disabled individuals to access their rights under this legislation. One key initiative was an Advocacy Project run by RADAR in the early 1990s which sought to increase awareness amongst both local authorities and disabled people of the statutory rights provided under Section 2. The advocacy provided by this project - which published a report called 'Disabled People have Rights' - led directly to a series of court cases which established some important precedents.
One of the most important involved Gloucestershire County Council who, in order to make cuts to their social care budget, had reduced the amount of support provided to those receiving home care services. A series of legal challenges established, firstly that support could not be arbitrarily reduced without re-assessing an individual’s needs, and secondly that, as lawyer Luke Clements explains, “once a local authority has decided that a person has ‘eligible needs’, these must be met irrespective of resource arguments”.
The Gloucestershire and other cases established that, while a local authority could take resources into account in their definition of ‘eligible needs’, once it has been decided what levels of need are to be classified as ‘eligible’, then, if a person is assessed as meeting that level of need, arrangements have to be made to meet those needs – and the arrangements have to be related to the circumstances of that particular individual.
Unfortunately, in practice, the legislation and case law does not provide sufficient protection of disabled people’s rights – primarily because some local authorities continue to ignore their statutory duties. Often they do this as a result of ‘custom and practice’ – in other words it isn’t written down as a formal policy but is something that is part of the everyday practice of decision-making. One of the most common examples of this is the practice of placing a limit on the amount of funding that will be approved for individual care packages. This amount usually varies according to which ‘social care’ group someone is placed in, for example the ‘cost ceiling’ applied to home care or residential care placements for older people is lower than that for people have learning disabilities and/or physical impairments.
Occasionally, local authorities are bold enough to put such illegal practices in their policy documents and recently the website False Economy highlighted one of these. In a budget paper titled “A fair budget for a fairer city”, Newcastle City Council set out its proposal to:
put in place afunding panel that will authorise all high cost care packages to new and existing users. Packages costing more than £500 per week will be reassessed with a maximum upper limit of spending on care packages to meet each person’s individual needs. We will implement this over the next two years. The upper limits principle is already applied to services for older people.
It is unusual for a council to be open about this kind of action (and indeed about their existing policy relating to older people), not least because it is in clear breach of community care law. A local authority should not take a decision that an individual’s needs will be responded to by providing no more than a certain level of service or funding.
Even without such a blatant statement which contravenes statutory obligations, funding panels often act in ways which are open to legal challenge. This is because they often fail to take full account of the needs and circumstances of the individual who has been assessed and instead apply a depersonalised and generalised format with the sole purpose of rationing resources. As Luke Clements and Pauline Thompson point out, in their book Community Care and the Law, such practices have been successfully challenged in the courts, though in many instances, individual cases have been settled to avoid litigation.
Such illegal rationing mechanisms are particularly worrying in the context of the closure of the Independent Living Fund and the government’s assumption that local authorities will replace the funding that would previously have been received from the ILF by people who have high levels of support needs. It is also worrying in the context of the continuing dearth of advocacy services and of reductions in entitlement to legal aid. Rights are meaningless unless people know about them and have effective means of redress.
The current legislative framework for social care does not provide a full entitlement to independent living of the kind argued for by many of us (and most recently by the JCHR’s Inquiry into independent living). However, it does provide some important rights for disabled people and places key statutory duties on local authorities. We need greater awareness about these rights and duties, and the help of organisations and lawyers to enable disabled people to resist the casual denial of their rights which has been all too common in the past, and which will undoubtedly increase in the context of the severe pressure on social care budgets. We also need a statutory right to advocacy, as set out originally in the Disabled Persons Act 1986 but never enacted. Perhaps someone can start thinking about how to get this into the next Labour Party manifesto?