The National Advocacy Service (NAS) held its first conference My life, my say, my way, in Dublin Castle on 9 September 2013. NAS was set up to provide an independent, confidential service to the person with disabilities and it is funded and supported by the Citizens Information Board. It operates through five regions, each with a manager and a team of advocates. Its aims are to keep the person at the centre of services and to enable people to follow their own wishes wherever possible.
The Minister for Social Protection, Joan Burton, opened the conference, noting NAS’s key role in empowering people with disabilities to speak for themselves. Both the Chair and CEO of the Citizens Information Board, Sylda Langford and Tony McQuinn, spoke of the work undertaken to date. Ben North and Andrea Reynolds (manager and senior advocate) set out their principles and work practices. Given the level of need in many disability areas, it is important for NAS to be clear about its purpose so that it sticks to its main role.
Terry Donoghue from Cheshire gave an honest response to advocacy, as a service-provider. He welcomed the shift towards participation and a fairer balance of power between person and service. The arrival of advocacy is mainly a development opportunity for a service-provider—nudging them towards greater openness about control structures, and from defensiveness to growth. The main difficulties arise over misinterpretation of roles, overcoming the poverty of many people’s lives and accepting the need for sometimes messy changes within the service.
Sally Warren from the Paradigm organisation in the UK was the keynote speaker. Her lively presentation outlined practical ways of achieving an ordinary life. Her message was: keep it simple and don’t over-support people—although the latter seems a minor danger in the present Irish context of cutbacks! “Bricks and mortar and lots of staff do not necessarily create a good lifestyle. How we direct and mould support around the person does,’ she said. A flourishing life could be built with all sorts of supports, some from the person’s community. Getting the trust of families was crucial—something that resonated with me a an former-carer. Sally saw ‘just enough support’ promptly available, as reducing intrusion in the person’s life; and she challenged the notion that all people with disabilities need ‘constant surveillance’. There wasn’t a word about risk assessment or health and safety. But then as Sally said: ‘Fresh eyes and new ways of thinking are essential!’
During the breakout sessions, burning topics like individualised funding, self-advocacy and (escaping from) congregated settings were discussed—as well as the duller but necessary ones, such as finance and housing.
But the stars of the show were the people with disabilities who told their own idiosyncratic stories of engagement with NAS. This was the My way, my say piece par excellence. Louise Haughney described the support she had got from her advocate in her dealings with a hospital complaint following a failed procedure. This resulted in the hospital setting up a personalised plan for her for any future visits, along with increased care hours from the HSE.
Jane Fennessy characterised herself as ‘well able to advocate in letters and phone calls’, but after a breakdown in communication with her service, she realised that at crucial meetings she needed support from someone who accepted her as she was. NAS had provided that person.
Mary Sullivan told of her move to a place of her own and the ups and downs along the way. Some staff supported her ambitions, others were doubtful. The practical steps—like changing service provider and organising a HSE care-package—were probably key. ‘I might have been able to do this all myself,’ Mary said, ‘but I believe it would have taken years longer without the help of an advocate. …. The advocate let me speak myself when I wanted to. …. In the beginning we worked on very minor things because I wanted to test them as I wasn’t sure if they would be up to the job!! This helped me to have trust, which is something I find difficult to do.’ Her final definition of independent living was the most telling: ‘Independent living is feeling that you can be you.’