17. ADVOCACY SUPPORT
The purpose of this chapter is to confirm the importance and value of advocacy for carers in their own right and to encourage support for the development of carer advocacy.
17.1 Three dedicated carer advocacy initiatives operate in Scotland. Carer advocacy provides an important support to the most vulnerable carers to help them to communicate their views clearly and to support them on complex issues relating to the caring situation. Often these can require the co-ordination of action by several agencies or cover situations where carers seek to access mainstream provision for people with support needs. There may be situations where persistence is required over a long period of time to reach a solution, for example, with housing issues such as relocation or major housing adaptations to provide for independent living.
17.2 In addition to their caring responsibilities, carers can be swamped by a large volume of paperwork from a range of agencies involved with the care of the service user. They may also be required to produce a significant amount of correspondence themselves. Carer advocacy services support carers to fill in various forms and applications, write appeal submissions, draft formal complaint letters, write specialist education placement requests and write to MSPs, MPs and councillors.
17.3 Carer advocacy organisations report positive outcomes for carers on a wide range of issues, for instance, one-off interventions, multi-disciplinary hearings and long campaigns for re-housing or housing extensions to accommodate people with complex disabilities. Many of the beneficiaries are themselves disabled or elderly, or have mental health problems or learning disabilities. Providing carer advocacy can help restore family and partner relationships.
17.4 Carer advocacy should not generally be provided by independent advocacy workers who also represent users of services, as this may lead to a conflict of interest and undermine national guidance on principles and standards of advocacy. Carers centres are well placed to provide carer advocacy as most local carer organisations already fulfil the role as collective carer advocacy organisations.
"I am the sole carer for my son who has Autistic Spectrum Disorder. His condition was not diagnosed and he was excluded from school for nearly 4 years. I was judged by many professionals to be the cause of his behaviour. He was violent and abusive towards me and I became depressed and suicidal. Having been informed of the existence of the local Advocacy Service I now have a trained and sympathetic advocate who has, after a 3 year battle, got my son diagnosed and starting to be integrated into mainstream education. Advocacy has been my lifeline. I can rely on her support and advice at any time. She is both mine and my son's voice at meetings."
Allison, who is the sole carer for her son, who has Autistic Spectrum Disorder.
17.5 The Scottish Government and COSLA recognise the value and benefit of representation for carers and will consider the scope for guidance about carer advocacy. In view of the fact that the most vulnerable carers can benefit enormously from advocacy support relating to their ability to care and the support they receive for their caring role, we will also encourage local partners to develop or expand carer advocacy.
ACTION POINT 17.1
The Scottish Government and COSLA acknowledge the value and benefit of carer advocacy. From 2011 onwards we will encourage local authorities, NHS Boards and other local partners to develop or expand carer advocacy services for those in greatest need. We will also in 2011-12 examine the scope for producing guidelines on carer advocacy.