Will politicians soon face a more formidable, cohesive lobby group of families representing persons with learning disabilities? This is the aim which the National Parents and Siblings Alliance asserted at its first AGM in February. Delegates from parents and friends associations across Ireland attended the meeting in Dublin. They approved a constitution and elected officers for the coming year—Seamus Greene, Chairperson; Karen Canning, Secretary; Tom Healy, Treasurer; and Gina Moloney, PRO. A number of area coordinators are also being named.
The major themes of the alliance are to improve networking among existing representative organisations, strengthening personal contacts locally, regionally and nationally; to train individuals from member organisations to become more effective advocates/lobbyists; and to present a united focus in approaches to government and service providers. Chairperson, Seamus Greene emphasised that the alliance has been formed not as a new organisation in competition with existing groups, but as a network for existing parent and sibling organisations, in cooperation with other representative bodies such as NAMHI and the Federation of Voluntary Bodies. Membership in the Alliance is open to all parents and friends or siblings organisations, and to individual families where such an organisation is not available, or who are without a service.
The Alliance will campaign for increased financial provision for learning disability services and for the establishment of a statutory legislative framework of rights for persons with disabilities. The aim is to strengthen member organisations with a professional approach so that the demands of those advocating for persons with learning disability will be taken more seriously.
Although the new Alliance conducted an active pre-budget campaign last autumn, it recognises that a long campaign lies ahead in order to influence government policy and budget-formation. Fergus Finlay, offering his knowledge and experience of the political arena, spoke about the Alliance’s plans for the year. During coming months it is will concentrate on building up the alliance network and gathering data on documented needs. Training sessions will be held for representatives of member organisations on lobbying techniques, PR, media training and communication skills. He emphasised, and this was echoed by other speakers, that it was vital for alliance members to leave any party political affiliation or label ‘outside the door’; it is counterproductive for any lobby group to allow itself to become identified with a particular party. He pointed out the importance of using local print and broadcasting media which are ‘an empty space crying out to be filled’.
Gina Moloney, PRO, spoke about the need for parents to improve their networking and advocacy skills so that they can bring their concerns, without ‘cap-doffing’, to service providers and to a wider audience. For the campaign to be effective, it needs to be well-timed and coordinated at local, regional and national levels, and in partnership with others such as NAMHI and service providers.
Pat McNamara, Galway, spoke about the importance of guaranteeing the effectiveness of parent participation on health board central planning committees; significantly, there was virtually no mention of parents in the report of the Department of Health Working Group on the Implementation of the Health Strategy in relation to persons with a mental handicap Enhancing the Partnership (1997). Ger South, speaking from twenty-five years of campaigning within the Limerick Parents and Friends Association, cautioned that politicians have been able largely to ignore the ‘mental handicap lobby’ because it has been weak and uncoordinated, and that they would take quick advantage of any sign of dissension within our ranks. He said the Alliance must use the media to educate the politicians and the public: ‘the thousands out there need to know what we in here know’—the realities of our families’ lives and the needs of their members with learning disabilities.
Another speaker advised that local representatives and TDs should be asked to follow up in writing any verbal assurances they give of agreement and ‘being on our side’. They should also be sent the minutes of all such meetings. Meetings with cross-party groups may be more productive than individual contacts.
Chairperson Seamus Greene concluded the meeting by reiterating that the success of the National Parents and Siblings Alliance would be totally dependent on strong local groups, the consistency of their voice and the coordination of their efforts. An action fund would be established, with a contribution of £25 requested from each member organisation. A representative of the Alliance officers and area coordinators would be available to attend any local area meeting to which they were invited.
The new National Parents and Siblings Alliance has taken on an impressive agenda. The AGM in February was attended by approximately 25 local representatives; their first challenge is to build the strength of the alliance and to overcome the geographical isolation of member organisations. However, the breadth of experience of many, and the evident energy and commitment of all present at the meeting were hopeful signs that the Alliance may significantly strengthen the voice of parents and siblings in cooperation with other advocacy groups for learning disability in Ireland.