In 2002 the South Eastern Health Board had the idea to get the people living in counties Carlow, Kilkenny, Tipperary (South), Waterford and Wexford and who used intellectual disability services to meet. At first this ‘idea’ was just to listen to what persons thought about services. Encouraged by the health board and managers of other centres, SOS Kilkenny set to work to bring a ‘forum’ together.
At the start, ‘staff’ got the conversation going; and people shared their feelings about training, day and residential services. Everybody liked being asked about what they thought, and being listened to, and they wanted to get together more often to discuss things, like: –
- getting doctors and nurses to explain things in easy words
- moving into a place of your own
- choosing your own friends
- doing as much as you can yourself
- being asked if you liked a personal assistant or house-parent,
- being spoken to with respect like any other grownups.
At another meeting in 2003, the forum agreed to take on work with help from someone that was ‘on their side’. People made two important suggestions: to have a conference to attract attention, and for a course to be designed to help them to become able leaders.
The Equals Conference took place in December 2003, in Kilkenny, with guests from almost all the services in the area, TDs, councillors, business people, South Eastern Health Board, FÁS, NDA, NAMHI and Disability Legal Resource. SOS Kilkenny was encouraged to help train and set up a forum leadership. They got help from the health board, Comhairle and the Dormant Accounts Fund to create a facilitator’s post to work with the forum. The work included holding elections, seeing what people felt they needed to learn to be good leaders, and running a course to meet that need.
Cabrini de Barra, in the Brothers of Charity Services, and Joe Wolfe and Associates helped the steering committee with good advice. Elections were held in the centres around the southeast. Anyone who wanted to stand in the election could do so. Centres with up to 50 elected one representative; centres with up to 100 elected two representatives, and centres with more than 100 elected three representatives. At first, 23 were elected and, on 14 April 2005, they came forward to hold the forum’s ‘Parliament’. (That number has risen to 52 since then.) The leaders of the new forum chose the name ‘Seasamh’, which is the Irish word for ‘standing’, and they decided on a logo with trees and hands.
Between April and July 2005, elected representatives, with the facilitator, set to work to design a leadership course. Waterford Institute of Technology said yes to granting the ‘Certificate in Leadership and Advocacy’. In the course, students learn about leadership and advocacy, teamwork, communication skills, the history of disability in Ireland, standards of service, programmes and campaigns, and inclusiveness. Students on the course mix with students studying social care.
Since March 2006 SOS Kilkenny has worked to spread the advocacy model created by Seasamh in the south-eastern region, to the north-eastern region where Midway Services (based in Navan) are partners in a project called A seat at the table. In 2006, the Dundalk Institute of Technology granted accreditation to the Certificate in Leadership programme. This project is funded by the Department of Justice Equality and Law Reform under its Enhancing Disability Services Initiative. The funding allows the work to get ‘seats’ where decisions are made that affect the lives of people accessing intellectual disability services. A recent report shows that the Seasamh Model is transferable to other parts of the country.
Parliament members want to get on ‘boards’ of their services, and into local and regional committees; where they can act as real representatives, no longer just accepting the decisions of others, but as free and equal citizens looking others in the eye and contributing to discussions and decision making. Seasamh members aim to get places on the teams that check how good services are. Seasamh wants to help health professionals and care managers to improve day-to-day health care.
Parliament members gave two plenary sessions in the first All-Ireland Self Advocacy conference (20–21 June 2006). They also held parallel plenary sessions at the All-Ireland Self-Advocacy Conference hosted in the University of Ulster in Northern Ireland, and were commended for their respective contributions by Dr Patricia O’Brien of the National Institute for Intellectual Disability, Trinity College Dublin.
Timothy O’Connell, reporting on the Seasamh project at the European Association of Service Providers for Persons with Disabilities (EASPD) in Vienna, May 2005.
Seasamh representatives also gave three presentations on 28 March 2006 during the Active Citizenship Awareness Day at the Gandon Inn in Co. Laois, and again on 2 October 2006, at the Consultation Seminar hosted by the Taskforce on Active Citizenship in Tullamore, Co. Offaly. Mary Davis, the Taskforce chairperson, commended them for the quality and relevance and foresight of their various contributions. Seasamh members took part in the HSE’s Transformation Programme on 29–30 March 2007, in Kilkenny. And in May, the Parliament gave team-presentations at the Rights Seminar in Tullamore, Co. Offaly, and at the ‘Seat at the Table’ National Conference in Kilkenny. Our open-space forums have continued during the year, with a Seasamh Open Forum at the Talbot Hotel in Wexford (30 August) and the presentation of a drama on advocacy at Windmill Therapeutic Centre (also in Wexford).
Seasamh’s chairperson, Anita O’Connor (from the Carlow Delta Centre), says: ‘Being asked what we think “first” is really important and that’s why I think this way of doing things really works. When you are asked first, it means that what we say counts and that the things that are done and the way they are done feels right.’ Derek Watson says: ‘I like talking in the meetings now, I think people are beginning to listen, we still need Tim to help us with stuff, but we do more and more of the talking now.’
‘Conversation’ best describes the facilitative style in Seasamh. It rejects spurious power or authoritarian interventions and it purposefully avoids the temptation to impose meaningless ‘rote’ learning, or to ‘interpret’ participants’ contributions. Unobtrusive interventions are catalytic and aimed to empower. The Seasamh ethos is based on the social model of ‘helping’, not ‘interfering’. Supporting participation in Seasamh, its forum and the leadership course, has also given the participating organisations another way of working together. By giving one-to-one help, transport, and sharing their buildings, centres throughout the region have shown our wider society how much we can achieve (and how they can work together too!).
Parliament members are leaders; they draw public and official attention to the concerns they spot and they help to get things done.