NAMHI NOTES

ISSUE NO.4 - MAY 1999

In this Newsletter:

1 AGM 1999 Report

2. Executive Committee 1999-2000 

3. New Publications: Standards of Care, Directory of Services 1999 

4. ‘Walls of Silence’ New book by Annie Ryan 

5. Carers’ Payment - £200 respite payment in June 

6. Education Update - Education Act 

1. AGM REPORT

The feedback from this year’s AGM held in the Galway Bay Hotel, Salthill Galway on the l6th-17th April has been very positive. The new format of a panel discussion on the Friday evening proved a great success. Three hundred delegates heard contributions from parents, siblings, service users and service providers on their vision of service provision for the new millennium This session was chaired by Justice Declan Costello, former President of the High Court, and first President of NAMHI. On Saturday morning there was a full house to hear the address of the Minister for Health and Children, Mr. Brian Cowen, T.D. The Minister took questions from the floor and spoke individually to delegates during the lunch break. Mr. Cowen spoke of his commitment to providing additional residential, respite and day services. He recognized that there has been an increase in the number of persons requiring services and this had led him and the Department of Health to a focus on future planning. He was particularly conscious of the need for extra respite places. In her response to the Minister, Ann Donovan, President of NAMHI, welcomed the additional developmental funding in last years budget but made it clear that NAMHI would not rest until all children and adults had a appropriate services. The Minister was accompanied by Mr. Frank Fahy, T.D. Minister of State at the Department of Health and Children.  Judge Declan Costello, Mr Eamon Carpenter and Mrs Kitty Callinan were made Honorary Life members of NAMHI. At the delegates dinner dance on Saturday evening tributes were paid to them for their outstanding work on behalf of people with a mental handicap/intellectual disability. Specially commissioned pieces of Dublin crystal were presented by Ann Donovan. A presentation was also made to Don Wills, President of the world body, Inclusion International to which NAMHI is affiliated. He addressed the AGM on the work of Inclusion International. He thanked the members of NAMHI for their support for Bulgaria through the Adams Fund. Don has a daughter with an intellectual disability and traveled to Ireland with his wife Maureen at his own expense.  NAMHI would like to thank all those involved in this year’s AGM and in particular to Tom Hogan, CEO of the Galway County Association, for his Trojan work in organising all AGM bookings and liaising with the hotel. We look forward to AGM 2000 in Cork on the l2th-l3th May 2000 in the Silver Springs Hotel. 

2. Executive Committee

Honorary Officer Aine Keaveney has stepped down from the position of Assistant Honorary Secretary and Ursula King was nominated for this post and elected at AGM. Harry Boland and Jean Spain indicated their willingness to serve as Honorary Treasurer and PRO respectively. Bill Shorten and Maeve Harrington were nominated for the post of Honorary Secretary and following a tied vote at AGM, a postal ballot was carried out and Bill Shorten was elected. The President, Ann Donovan and Vice President, Tony Darmody were elected for a two year period. Executive Committee membersAt the Council Meeting on the 1st of May the following members were elected to the Executive Committee. These were: Jean Bayliss, Noirin Buckley, Jerry Buttimer, Anne Gunning, Maeve Harrington, Tom Healy, Stephen Kealy, Aine Keaveney, Siobhan McConnell, Mary Nee, Rosaleen O'Connell, Pat O'Shea, Annie Ryan, Jonn Ryan, Margaret Schlingloff.The incoming Executive co-opted following members: Frieda Finlay, Finula Garrahy, Dan Rogan and Eileen Brophy. Former Presidents remain on the Executive for a three year period. ElectionsThe Executive faces a very busy year (especially with the forthcoming Local andEuropean Elections in June) keeping the pressure on Government to end waiting lists. NAMHI wishes them well and asks all its members to contact their own local candidates repesentatives and let them know about the waiting lists in their own area. Details of the campaign will be sent to members. A leaflet for the European elections will be produced in conjunction with other groups including the Disability Federation of Ireland, the Federation of Voluntary Bodies, and the Irish Council of People with Disabilities. 

3. New Publications

The Minister for Health has agreed to officially launch the Directory of Services Booklet and the Standard of Care leaflet which were printed just in time for this year’s AGM. In light of the revelations of abuse of children in the recent RTE Programme 'States of Fear' the guidelines in the Standard of Care leaflet are most timely and must be implemented. The launch will take place on the 26th May in Buswell’s Hotel, Dublin.Copies of both are available from NAMHI. There is no charge for the Standards of Care leaflet but due to the high cost of printing a charge of £5 plus postage has been agreed for the Directory of Services. Members are entitled to a free copy.   

4. 'Walls of Silence' - new book by Annie Ryan 

‘Walls of Silence’ - Another launch will take place on the 20th of May. Annie Ryan, President of NAMHI 1992-1994 and campaigner for the rights of people with a mental handicap in psychiatric hospitals has written a book Walls of Silence which tells the story of how each Government since the foundation of the State has disregarded the most basic needs of people with a mental handicap in psychiatric hospitals. The book will be launched by the broadcaster and journalist Vincent Bowne. It will cost £10. For further information contact: Red Lion Press, Tel: 056 25162 6.  

5. Carers Allowance

The Budget last year announced that a payment of £200 for respite care will be made to all those in receipt of the allowance on the 3rd of June 1999. It will be up to families and carers to decide how they will spend this money. NAMHI welcomes this move as it signals a long awaited recognition of the work of carers in the home and their need for respite care. The sum involved is paltry and can at the most only provide for a short respite break. NAMHI will continue to seek an increase in the amount and an end to the means test for the Carers Allowance. The Carers Allowance is to be extended to those in receipt of Domiciliary Care Allowance payable to carers of children with severe disability aged 2-16 years who live at home. It is estimated that there are approximately 9,000 people in receipt of Domiciliary Care Allowance and that around 3,000 of these maybe eligible for Carer’s Allowance. The Domiciliary Care Allowance only takes the child means into account whereas the Carer`s Allowance takes the means of the carer his/her spouse/partner into account. The Department of Social Community & Family Affairs will notify people in receipt of Domiciliary Care Allowance about this. NAMHI is affiliated to the Carers Alliance, an umbrella group of over 40 groups involved in caring 

6. Education Update

For the first time in the history of the State there will be an Education Act. This Act has an important link to constitutional rights and spells out as its first objective to give practical effect to the constitutional rights of children including children who have a disability. The Constitutional rights have been interpreted in the case of Paul O' Donoghue by Justice O Hanlon in 1993 and are quite clear. The State has a clear constitutional obligation to provide for the free primary education of children with a mental handicap in as full and positive a manner as it has done for other children in the community (O' Hanlon 1993).

In recent months the Minister for Education, Micheal Martin, has made a number of announcements in relation to the provision of education for children with disabilities. Last November he announced that all children assessed as having special educational needs arising from a disability will have an automatic entitlement to the level of teaching and child care support which their condition requires. For the first time children in ordinary schools will have automatic access to special teaching support and, if necessary, child care support. Previously the situation was dependent on the number of children with special needs in a particular catchment area and was based on a reactive system. NAMHI has written to the Minister to ask him to ensure that in addition to educational supports all children with special educational needs have the essential supports such as speech and language therapy, psychology, physiotherapy. It is important that parents contact the Department of Education if their child is not receiving an education or is receiving an education inappropriate to his/her needs.