Facilities for women & young adults found lacking

Laura Niwa, policy officer at Law Centre (NI), examines the lack of appropriate respite care facilities for women and young adults in Northern Ireland.

Respite care is vital to ensure that everyone in the family is equally and fully supported.{footnote}Mencap, Breaking Point Survey, 2006, pg. 3{/footnote} Respite care allows for much needed breaks for carers. It also provides the opportunity for children and adults with disabilities to have a change of scene and a change of carer which can be a positive and welcome new experience for the individual concerned. This article outlines some of the Law Centre’s concerns with the lack of appropriate respite care facilities and support for many families, highlighting those areas that warrant particular attention.

Age & gender appropriate facilities

The Law Centre has considerable concerns regarding the provision of facilities and services for young adults with special needs or learning disabilities. We have correspondence on the gap in provision of age appropriate respite care in Northern Ireland going back to 2000. This is a wide ranging issue and one that needs to be addressed as a priority. When young adults with special needs or learning disabilities turn eighteen or leave school, (usually at eighteen or nineteen), they are moved from children to adult support services. This often results in young adults with special needs losing contact with their current support services social worker. This change can cause considerable distress for a young adult who has established a relationship with a social worker only to have to move to a new social worker who may not have the relevant skills and experience of working with young adults with special needs.

Our community care legal practitioners are currently advising a number of clients on these issues. There are considerable gaps in the provision by adult support services of appropriate facilities for young adults with special needs. In particular, there is a lack of age appropriate respite and/or day care facilities to provide the support and assistance young people with special needs require. A further problem is the lack of gender appropriate facilities for people who require respite care. This is particularly evident in the provision of respite care for women with brain injuries. As most road traffic accident victims tend to be men, there is a lack of appropriate facilities for female victims who require respite care for resulting brain injuries.

Another form of respite care available to carers is day care facilities. Day care facilities do not provide residential care but they do provide a welcome change of scene for an individual with special needs and a break for his/her carer. Once again there are insufficient day care facilities available and places are strictly limited.

Concerns for carers

Many carers are the sole care giver(s) for their family member and eight out of ten families provide more than fifteen hours of care every day.{footnote}Mencap, Breaking Point Survey, 2006, pg. 5{/footnote} Such a high level of constant and intensive care, without pay or holidays, places an enormous burden on the carer (s). Family relationships often suffer and time spent with other family members including other children can be severely limited. Without adequate respite care, a carer’s own physical and mental health is at risk as the endless pressure of providing care takes its toll.

The Carers and Direct Payments Act (Northern Ireland) 2002 gives carers the right to request an assessment of their individual needs and places an obligation on trusts to meet the needs of carers as assessed, including the need for respite care.{footnote}Luke Clements, Carers and their Rights – the law relating to carers, June 2006{/footnote} The Act contains a duty to provide the services required yet no extra funding was earmarked to meet the requirements of the Act. So even if a carer was assessed as requiring additional services, it is unlikely that the relevant trust will have adequate resources to provide this support.

Carers represent one of the most socially excluded groups of people for whom the government’s inclusion policy appears (to date) to have failed.{footnote}Social Exclusion Unit, Office of the Deputy Prime Minister, Breaking the Cycle: Taking stock of progress and priorities for the future, Sept 2004 at para 6.17.{/footnote} Many carers remain unaware of their rights under the Act and further awareness raising is required regarding the right to an assessment of need. Consideration also needs to be given to the allocation of resources by the health and social care trusts to ensure that when assessments are completed there is funding for the recommendations, including any need for respite care, to be implemented.

The right to assessment for people in need of respite care is contained in section 4 of the Disabled Persons (Northern Ireland) Act 1989. Section 3 of the Act, which contains a duty to make written statements (if requested) to specify the need as assessed and how the assessed needs will be met, was never enacted in Northern Ireland. Furthermore, there is no equivalent section enacted for carer's assessments, instead a good practice guide was issued by the Eastern Health and Social Services Boards in 1999 which was largely ignored.

The Law Centre recognises that health and social care trusts as public bodies are bound by principles of natural justice to meet the general requirements of proper decision making. We would highlight the need for section 3 of the Disabled Persons (Northern Ireland) Act 1989 to be enacted and call for an equivalent section to be enacted within the Carers and Direct Payments Act (Northern Ireland) 2002. If enacted, these sections would ensure that both carers and those in receipt of care have the right to request a written statement clarifying their assessed need and most importantly how that assessed need will be met. This will create a more open and transparent system and enable greater access to justice for many individuals in Northern Ireland.

Cross-party support

We welcome the commitment shown by all parties at the plenary debate in the Assembly on 25 June 2007 and the unanimous passing of the motion ‘that this Assembly calls upon the Minister of Health, Social Services and Public Safety to ensure that all carers, formal and informal, can access services and support to maintain their own health and well-being, to recognise financially the vital role they play and ensure uptake of all benefit entitlements.’ The Law Centre will continue to monitor this issue and we look forward to seeing the results of the passing of this motion and the impact this will have on the provision and receipt of respite care.