NAMHI NOTES

ISSUE No. 1. - JULY 1998

In this Newsletter:

1. AGM Report - Report on 37th AGM held in Killarney on April 24/25th

2. Budget Campaign Campaign to influence November 1998

3. Plan 2000 Update - Revisiting the 5 Year Plan

4. St. Ita's Hospital - New plans for the developmental of St. ITA's campus

5. Parents Seminar - 4th Annual Parent's Seminar Saturday 31st October in Cork

6. Fragile X Society - Seminar & AGM 5th September 1998

1. AGM Report

Killarney AGM Success

The beautiful setting of the Lakes of Killarney provided the backdrop to the 37th AGM of NAMHI held on the 24th to 25th of April 1998.

Over 300 delegates from all over Ireland debated motions on education; day and residential services; legal rights and terminology. Lively debate took place on the forthcoming education Bill, the long waiting lists for services and the proposal to change the name of NAMHI and to cease using the term mental handicap. The clear message from AGM was that waiting lists and inappropriate placement of people with a mental handicap in psychiatric hospitals will no longer be tolerated. Immediate action is called for and NAMHI must ensure that those in Government will receive this message.

The guest speaker was Mr. John 0' Donoghue, T.D., Minister for Justice, Equality and Law Reform and the Address of Welcome was given by Jacqui Browne, Chairperson of the National Rehabilitation Board. The AGM was hosted by the Kerry Parents and Friends Association who were celebrating their 25th anniversary and who pulled out all the stops to ensure a smooth and efficient AGM during the working sessions and a very enjoyable banquet on the Saturday evening.

New President of NAMHI 1998-2000

Mrs. Ann Donovan was inaugurated as President of NAMHI at the AGM. She succeeds Mr. Jim Gilmartin who served NAMHI so well during the past two years. Mrs. Donovan is also chairperson of the Galway County Association. Mr. Tony Darmody was elected vice- President and Mr. Harry Boland Honorary Treasurer. The Honorary Officers are Mr. Bill Shorten, Secretary, Mrs. Aine Keaveney, Assistant Secretary and Mrs. Jean Spain PRO.

Honorary Awards

As with every AGM Honorary awards were bestowed on people for their outstanding work and service to people with a mental handicap. This year recipients were Dr. Norrie Buckley for her pioneering work in Kerry. Mr. John O'Gorman for his work in Bulgaria and for the Adams Fund and Her Excellency, the American Ambassador, Mrs. Jean Kennedy- Smith for her efforts in promoting the rights of people with disabilities during her stay in Ireland and for establishing the Rose Kennedy Awards for Mothers, received by a number of our members.

AGM 1999

AGM 1999 will take place in the new Galway Bay Hotel, Salthill Galway on the 16th and17th of April 1999

2. Pre-Budget Campaign

As in previous years NAMHI will be undertaking an active Pre-Budget campaign to ensure that the Government meets its commitment to end waiting lists for day and residential services. Figures which were published by the Department of Health in 1997 have estimated that there is a need for 1,439 residential places and 1039 day places. In addition there are approximately 1,200 people with a mental handicap resident in psychiatric hospitals or designated units. The revenue costs of meeting this need has been put at £63.5 million pounds over five years. Since 1997 only £17 million has been spent. At this rate the waiting lists will continue to grow and will take years to eliminate.

Members are asked to contact their local political representatives and inform them of the needs in their own areas. The letter writing campaign and the General Election campaign of 1996/1997 in conjunction with the leaflet ‘It’s nice to be thought of as special but not if you are on a waiting list’ were successful in bringing the needs of families to the attention of politicians.

Bye-Elections

In February and March of this year NAMHI used the opportunity presented by the two Bye-Elections in Dublin North and Limerick East to gain valuable public support and publicity for our campaign to end waiting lists and the placement of people with a mental handicap in Psychiatric Hospitals. All the candidates in both constituencies were invited to attend a public meeting in their area and to pledge their support to the NAMHI campaign. They also had the opportunity to hear at first hand the problems experienced by families and service providers in their constituencies. A further Bye- election is due in Cork South Central later in the year and NAMHI will hold a similar public meeting in Cork to draw attention to both the local and national needs. Further details will be circulated to members by the NAMHI Regional Coordinator after the summer

3. Plan 2000

It is over two years since NAMHI launched its five year plan: 2000 A Plan for Progress at the 1996 AGM in Donegal. It is now time to revisit this plan and look at what has been achieved and what still needs to be achieved. The overall aim of the plan is to ensure that all people with a mental handicap have a service based on the key principles of Equity, Quality of Service and Accountability by the year 2000. A great deal has occurred in the last few years in the area of disability such as the publication of the Report of the Commission on the Status of People with Disabilities, the establishment of the Irish Council of People with Disabilities, the publication of the data base on mental handicap/intellectual disability and the formation of a new National Disability Authority. NAMHI must take all of these events into account in its strategic plan. To this end our president, Mrs. Donovan, has set up a small working group to review the work done on Plan 2000 and to make recommendations for future action.

4. St. Ita's Hospital

For years NAMHI has drawn attention to the inequitable and unacceptable position of those people with a mental handicap in residence in psychiatric hospitals or former psychiatric hospitals. Regular motions and debates at AGM as well as discussion at regional meetings have kept this issue alive, even if action did not always result. Mrs. Annie Ryan, a former NAMHI President has been an indefatigable campaigner for years for the rights of people with mental handicap in these hospitals. Following the closure of Our Lady's Hospital in Cork, the largest residential center for people with a mental handicap in the Republic is St Ita's Portrane with an estimated 350 people in residence. In the last year much publicity has been given to the plight of these residents and NAMHI made it a focal point during the bye-election campaign in Dublin North the constituency where St Ita's is located. Campaigners such as Mrs. Ryan and the Portrane Parents and Friends Association have experienced very many disappointments over the years as proposals for change were put forward yet progress on the ground was slow. A cautious welcome is therefore given to the proposals for the future of St Ita's Portrane outlined by the Eastern Health Board. These proposals outline plans for the development of community services, for realigning existing services and for new buildings on the campus. A recent NAMHI sub-committee report on psychiatric hospitals made a number of important recommendations on psychiatric hospitals and we will be pressing the Department of Health and the Health Boards to ensure that sub- standard facilities are replaced. At our AGM, Minister O'Donoghue referred to the Government's plans to upgrade facilities for residents in St. Ita's, in St. Raphaels Youghal, and in other psychiatric hospitals.

5. Parent's Seminar

The fourth annual parents’ seminar will take place on Saturday the 31st October in Jury's Hotel Cork. The subject will be Reaching Out and Letting Go. This seminar will look at some of the issue which arise for families when a family member goes into residential care. These very successful seminars offer parents and professionals a chance to meet and discuss issues of mutual concern. A full programme will be issued later.

6. Irish Fragile X Society

The first AGM of the Irish Fragile X Society will take place on the afternoon of Saturday the 5th September 1998 in UCD, Belfield, Dublin. The AGM will be preceded by a meeting on Fragile X which will be addressed by Dr. Jeremy Turke, Child Psychiatrist, St. George's Hospital London, and Prof. Andrew Greene, Geneticist, National Centre for Medical Genetics, Our Lady's Hospital, Crumlin. All are welcome.