Friday, June 17, 2011

Resourcing Independent Living: Universal Access and Personal Supports

by Noelin Fox

Noelin is a Ph.D candidate in the Centre for Disability Law and Policy, NUI Galway. Her research examines the right to independent living provided for in Article 19 of the UN Convention on the Rights of with Disabilities. Noelin has worked for many years in intellectual disability services’ in Ireland.

A proposal by Birmingham City Council to limit the provision of direct support to disabled people with ‘critical’ need only was ruled to be unlawful by the High Court in May this year. The judgment is available here. This was on the basis that the policy failed to give ‘due regard’ to the impact of the proposals on disabled people as required by Section 49A of the Disability Discrimination Act 1995 (as amended in 2005). Section 49A stipulates that public authorities must, in carrying out their functions, give due regard to:

a) the need to eliminate discrimination that is unlawful under this Act;

(b) the need to eliminate harassment of disabled persons that is related to their disabilities;

(c) the need to promote equality of opportunity between disabled persons and other persons;

(d) the need to take steps to take account of disabled persons’ disabilities, even where that involves treating disabled persons more favourably than other persons;

(e) the need to promote positive attitudes towards disabled persons; and

(f) the need to encourage participation by disabled persons in public life.

The claimants – four people with significant intellectual and other disabilities – alleged that the Council had failed in its duty to have due regard to the impact of the proposed policy changes on disabled people and that its consultation procedures were inadequate. On both of these points Mr. Justice Walker found in their favour.

The proposal formed part of a larger policy change (termed the ‘new offer’), which would have seen the Council transform its services for disabled people, and included the following core elements:

  1. Information, advice and signposting available to everyone, fostering strong and supportive communities that value the contribution that each of their citizens can make
  2. Preventative and enablement services –to keep people as independent as possible for as long as possible;
  3. Individual budgets for people whose personal care needs are critical, based on a Universal Resource Allocation System, and subject to financial assessment
  4. Closer working with Health to keep people out of care and help them stay independent in their own home.

The proposal envisaged targeting funding for direct support only to those assessed as being in ‘critical’ need alongside the development of alternative means of support for other disabled people to assist them in accessing mainstream services. It was estimated that this would entail withdrawing personal support form approximately 5,400 people who currently use personal supports provided by the Council i.e. people with ‘substantial’ needs or who have no recorded needs assessment rating but nonetheless avail of support services. The policy envisaged the development within the community and voluntary sector of services designed to support disabled people in accessing mainstream services and facilities as well as an increased use of people’s own resources and family and informal community supports.

Although the Council was attempting to deal with major funding cuts, they suggested that this was not the only (or even the main) reason for the proposed changes. According to Mr. Peter Hay, Strategic Director of the Council’s Adults & Communities Directorate, the existing system of support to disabled people was unsustainable and was, in any event, not necessarily the best approach for people. He stated that:

‘Our judgment was … that it would be detrimental to the interests of our clients to provide them with services which we cannot continue, without developing substitute arrangements which are sustainable; we believe it is in their interests to get away from a culture of unsustainable dependency and as soon as we can… even if (which it is not) the money were available to sustain the former and develop the latter [the new policy of information, advice and signposting available to everyone, preventative and enablement services and closer working with health services] at the same time, that is not an approach which works.’

Recognising that the Council has a duty to balance the interests of the taxpayers and users of the Council’s services, nonetheless Mr. Justice Walker stated that the failure of the Council to adequately assess the severity of the impact of the proposal to move to ‘critical’ only support represented a failure of the authority’s statutory equality duty. He suggested that ‘… an alternative which was not so draconian should be identified and funded to the extent necessary by savings elsewhere’ by the Council.

The ideals of Independent Living are an inherent part of UK government disability policy as outlined in the Independent Living Strategy in 2008, which aims to ensure that (see here):

  1. disabled people (including older disabled people) who need support to go about their daily lives will have greater choice and control over how support is provided.
  2. disabled people (including older disabled people) will have greater access to housing, education, employment, leisure and transport opportunities and to participation in family and community life.

The Convention on the Rights of Persons with Disabilities (CRPD), which was ratified by the UK government in 2009, asserts the right of all disabled people to realize the full range of universal human rights, and their entitlement to specific supports needed to achieve this. Article 19 reads ‘States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community.’ Both the Independent Living Strategy and Article 19 mandate a combination of universalist and targeted approaches by embracing the right of access to mainstream services, hand-in-hand with personal supports to achieve and sustain access and participation in community. Neither one approach will work by itself – both are required. The policy proposal of Birmingham City Council also embraced the ideals of independent living and community participation – aiming at opening access to mainstream services, developing natural and community supports to facilitate access and direct support to individuals with support needs. These are surely laudable aims, however, the judgment starkly highlights the dangers of moving to such approach in a rushed and somewhat unplanned manner – and without adequate buy-in from those most directly affected. Independent Living involves supporting access to the mainstream and access to personal supports to achieve this – one cannot be provided without the other – and in this case removing personal supports from those with ‘substantial’ needs in order to fund the development of access to mainstream would have been, to quote Justice Walker ‘potentially devastating’.

As we move towards the greater personalization of services for people with disability in Ireland – including moving a proportion of public spending to personal budgets as promised in the Programme for Government of the Fine Geal/Labour Coalition – we need to take heed of the experience of Birmingham City Council. In particular the government must ensure that people with disabilities and their families/carers are fully consulted and involved in the development of new policies aimed at enhancing independent living and that where funding is taken from one model of service in order to develop the new model, that people are not adversely affected by this or are not left unsupported. The building of segregated and specialist services for disabled people in Ireland evolved over many years. Developing the opposite type of services will take equally careful planning and is a process which should be undertaken with care and attention – we can learn from experiences in other jurisdictions and we do not need to make the same mistakes.