September1998

On 27th July the Minister for Justice, Equality and Law Reform, Mr. John O'Donoghue, announced the establishment of a new 21 person National Disability Authority. This Authority will assume responsibility for advising the Minister on policy and on the development and implementation of standards for services for people with disabilities. An interim 21 person Authority has been appointed and Mr. John O`Gorman, a former past president and honorary life member of NAMHI has been appointed to the Authority.

In all 13 members of the Authority are people with a disability or a family member. The establishment of a National Disability Authority was one of the key recommendations by the Report of the Commission on the Status of People with

Disabilities and as such is welcomed. However, a number of the features of the Authority as proposed by the Commission are absent in this new Authority. The main differences relate to the power of the Authority to develop standards; the absence of grievance and redress procedures and a change from the principle of nomination to the Authority by people with disabilities to one of Ministerial appointment.

It is also a disappointment that the Minister of State with responsibility for disability issues, Mary Wallace did not use this opportunity to appoint a person with a disability to chair the Authority. The Executive of NlAMHI will be making a full submission on the Authority to the Government. In the meantime we hope that an Authority will emerge which will be independent and will be able to speak with the authoritative voice of Irish people with disabilities and which is free from any conflict of interests.

The Commission recommended the setting up of a 'Disability Support Service' which would operate through a national network of one-stop shops. This recommendation will now be implemented by merging the appropriate services of the National Social Services Board and the National Rehabilitation Board. Information and advice to people with disabilities will now be provided within the context of a mainstream service. This move should ensure the provision of locally based advice and information services to all citizens, disabled and non-disabled.

In another move towards mainstreaming services for people with disabilities, the Government announced the transfer of vocational training and employment from the Department of Health and Children to the Department of Enterprise, Trade and Employment; a move long called for by NAMHI.

On the 26th August Mr. Brian Cowen, Minister for Health and Children, announced an additional £5m in capital for mental handicap services. This money is to go towards the cost of replacing unsuitable premises and refurbishing and upgrading accommodation for people with a mental handicap resident in psychiatric hospitals. This news is particularly welcome to NAMHI and its members who have campaigned for so long for improvements in sub standard accommodation in these hospitals. However it is important that this money is released without delay. Reports from member organisations show that they still are waiting for capital promised in the last budget.

The Minister said that this brings the total additional capital and revenue funding allocated to services in the past year to £25m and pledges the Government's commitment to meeting the needs identified in "Services to Persons with a Mental Handicap -An Assessment of Need 1997-2001". The cost of meeting these needs has been put at £63m revenue. To date £17m has been paid for new services. The Ministers announcement is recognition of a huge backlog of need and we ask the Minister to prove his commitment by ensuring at least £25m in revenue for new services in the 1998/99 Budget and paying the remaining £25m before the year 2001. People on waiting lists need places without delay. Finance: Everyone knows the money is now available and NAMHI calls on the Government to use the extra millions in taxation revenue to end the scandal of waiting lists for once and for all.

Education: Bill Shorten (Chairperson) Noel Sinnott, Mercedes Egan, Tom Walsh, Anne Gunning

Stephen Kealy,(Chairberson) Ann Crean, Mary Cmnin, Marion Early, Brigid Fox, Anne Gunning, Rosaleen O'Connell

Harry Boland (Chairperson) Jean Bayliss, Noirin Buckley, John Hanlon, Verena Keane, Anne-Marie O'Neill, Annie Ryan. Ann Donovan (Chairperson) Harry Boland, Eileen Brophy, Carmel Goggins, Maeve Harrington, Ursula King, Siobhan Mcconnell, Jean Spain.

Pat O'Shea (Chairperson) Ann Donovan, John Joe Higgins, Verena Keane, Patricia Murphy, Andrew Petherbridge, Jean Spain.

Harry Boland (Chairperson) Eamon Carpenter, Tony Darmody, Ann Donovan, Jim Gilmartin, Ursula king, John O'Gorman

The Parents Sub Committee of NAMHI has produced a paper on Standards of Care for Services for people with a mental handicap. This document will be published shortly in booklet form and circulated as widely as possible. Services should be based on a collaborative effort involving parents, service providers and as appropriate the service user. The standards cover areas such as; admission and discharge policies, evaluation, access to adult and child teams, rights, management of challenging behaviour, client protection and appeals procedure.

Our thanks to Stephen Kealy and the members of the parents committee for their work in producing tne paper

Over a hundred parents and professionals attended the Fragile X Seminar on the 5th September in UCD. Professor Andrew Greene and Dr Jeremy Turk gave very informative papers on the genetics of Fragile X and Behaviour and Fragile x. NAMHI and the Centre for the Study of Developmental Disabilities were pleased to have been able to assist the newly formed Irish Fragile X Society with their first seminar and AGM. Fragile X is the most common inherited form of mental handicap and it is only in recent years that people are beginning to find out more about the syndrome

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 issues which arise for families when a family member with a mental handicap goes into residential care. Speakers include, Teresa Blake, Barrister, Eileen Brophy, Delta Services Carlow. Early booking is essential to avoid disappointment.

Please note that the NAMHI Cork regional meeting will take place prior to the seminar on Friday 3Oth October in the Metropole Hotel Cork at 7.30.pm. This is an important meeting given the forthcoming Bye-Election in Cork South Central.