NAMHI NOTES

ISSUE NO.3 - MARCH 1999

In this Newsletter:

1. AGM 1999 - April 16th & 17th Galway

2. Waiting Lists - Establishment of NAMHI Task Force on waiting lists & funding 

3. Staff Shortages - Report of NAMHI Survey on Staff Shortages 

4. National Database - National Intellectual Disability Database 

5. New Publications - Standards of Care, Directory of Services 1999 

6. Equality Authority - Launch of new Authority 

7. NAMHI Appointment 

1. AGM 1999

The 38th AGM will be held in the Galway Bay Hotel, Salthill Galway on the 18th 17th April. We are pleased to announce that the Minister for Health and Children, Mr. Brian Cowen, TD will address members on the Saturday morning. Friday evening will see an open panel discussion with representatives of service providers, both voluntary and statutory, parents, siblings, staff and self advocates. This session will be chaired by Justice Dedan Castle, former President of the High Court, and the first President of NAMHI. The motions from members will be discussed on Saturday when a lively debate on a wide variety of issues is expected. NAMHI would like to thank the Galway County Association, its CEO, Mr Tom Hogan, its Chairperson and NAMHI President Mrs Ann Donovan and staff for their assistance in organising this years AGM. We look forward to seeing our many friends and members in Galway. 

2. Waiting Lists

The disappointment expressed by members to the provisions in the Budget to tackle the waiting lists was fully discussed by Council at its meetings in December and February. One of the problems that has continually presented itself to NAMHI is the need to have accurate figures on the number of people on waiting lists for residential, day, and respite services in each health board area, the number, type, cost and location of new places created each year by health board area, the number of emergency cases and the impact of these on the waiting lists. It is essential that we have information on the number of new places created each year and how these relate to waiting lists. If new places are created waiting lists should be reduced and if not what are the reasons for this. To investigate these questions The Executive of NAMHI has established a Task Group chaired by Mrs Frieda Finlay. This group also will look at issues of funding, costing of places and definitions of waiting lists. The group will prepare a report for the Executive which will form the basis for the NAMHI Budget Campaign 2,000. The Executive have agreed to make funding available to assist the group with this important task. Members of the group are: Pat O'Shea, Ger South, Jean Spain, Stephen Kealy and Eileen Brophy. 

3. Staff Shortages

Staff shortages in all areas have been reported by both parents and services providers.  Following motions at AGM on this topic, a staffing Sub-Committee was established in 1997 with Mr. Jim Gilmartin as Chairperson. The issue of shortages is of great concern to NAMHI. The need to create new places each year inevitably gives rise to the question as to how these places are to be staffed. As part of its work the Sub- Committee undertook a survey of members on their current staff shortages. The results of the survey are now available. The information from those agencies who responded highlights serious deficiencies particularly in the area of nursing staff. NAMHI will be discussing these findings with the Department of Health and Children. There is an urgent need for a national strategic plan of action to cover all disciplines working in the field of mental handicap/intellectual disability. 

4. National Database

The National Intellectual Disability Database was established in 1996 to obtain information on people in receipt of and in need of mental handicap or intellectual disability services. It provides information that identifies the service needs of people and their families and is a tool to plan and develop appropriate services. To this end NAMHI has actively encouraged all parents to ensure that their children are on the Database and that the information contained is up to date and accurate. Dr. Ruth Barrington, CEO, of the Health Research Board spoke to Council members on the 30th February about the Database. Her talk was most informative and as a result of the interest shown by members at the meeting, Mrs Donovan, President of NAMHI and Chairperson of the Parents Sub- Committee said that NAMHI will return to this subject and would hold a seminar for parents on the Database and the Freedom of Information Act 1997. The main concern of parents discussed at the meeting related to their right to be involved in the process, particularly in the crucial area of the identification of future need. Under the Data Protection Act 1988 an individual or in the case of a child his or her parent, guardian has a right to request a copy of the information held about him or her on the Database rectified or erased. Each health board has a Database Coordinator who can be applied to. The Freedom of Information Act 1997 also gives individuals and parents of dependent children, including those of adult children with a mental handicap / intellectual disability similar rights in relation to their personal information. Dr. Barrington said that from September 1999 all parents or guardians of children under 18 years will be contacted to obtain their consent to have information about their child held on the Database. The legal position in relation to those over 18 years who are deemed incapable of giving informed consent is less defined. The law as it stands does not allow for adult guardianship of those aged over 18 years. However, Dr. Barrington said that those adults who are deemed capable of understanding the Database should have it explained to them and their consent sought and those who are incapable of understanding their parents should be contacted for their consent. Dr. Barrington also stressed the strict arrangements in place to ensure the confidentiality of the information supplied.

5. New Publications - Standards of Care

NAMHI is pleased to announce the publication of a new leaflet on Standard of Care which is intended to provide a guide to parents, families and service users as to what standards should exist in services to ensure that the quality of care is of the optimum and in line with best practice. Consistently high quality will not happen accidentally and it is the wish of NAMHI that this leaflet will provide a framework for the development of quality services throughout the country. Sincere thanks are due to the members of the Parents Committee; Ann Donovan, Jean Spain, Maeve Harrington, Carmel Goggins, Harry Boland, Ursula King. Siobhan Mcconnell, and Eileen Brophy. Thanks are also due to Stephen Kealy who wrrote the original document which formed the basis for the leaflet, Priya Prendergast for her advice and support and Deirdre Carroll for preparing the leaflet for publication. Directory of Service: It is now ten years since the last NAMHI Directory of Services was published. Since then there have been many changes and developments in services. NAMHI has now produced a new Directory of Services which we hope provides a comprehensive guide to services by health board area as well as information on Parents and Friends Support Groups. NAMHI is most grateful to all the organisations who took the time to answer our questionnaire and who responded to our telephone calls. NAMHI would also like to express its appreciation to Clíona Ní Chualáin and Jenny Doran who compiled the Directory. Clíona and Jenny were also responsible for undertaking the staffing survey.They are Social Science graduates from University College Dublin and are currently studying for their MSc. in Applied Social Research in Trinity College. Dublin. These two publications from NAMHI will be available at AGM in Galway. 

6. Equality Authority

The Minister of Justice, Mr. John O'Donohue, launched on the 8th of March the new Equality Authority. The Authority will have the responsibiIity for the elimination of discrimination within Irish Society and promoting equality opportunities under employment equality and equal status legislation. In addition to other groups the twelve member Authority will also have the responsibility for ensuring that people are not discriminated against on the grounds of disability. The Employment Equality Act has been passed but will not be implemented untilSeptember 1999. We are still awaiting the Equal Status Act and a Disability Act  

7. Appointment

Sinead Costello has joined the NAMHI staff since February 1999. Sinead replaces Colette Forde who left NAMHI last year to take up a new appointment. Sinead will be the voice at the end of the phone when you ring NAMHl. Members will be able to meet Sinead at AGM.