NAMHI NOTES

ISSUE NO.22 - November 2003

In this Newsletter:

1. Budget 2004: ‘No let up’ - namhi’s Pre-Budget submission 2004

2. Database 2002: Disappointing National Database figures 2002 show little reduction in waiting lists

3. Disability Bill: National petition to call for rights based legislation. The final push.

4. Who Decides & How?: Publication of discussion document by namhi on legal capacity and consent

5. namhi Directory: New updated Directory of Services for People with Intellectual Disability 

6. Forthcoming Events: Dates for regional meetings and other namhi events

1. Budget 2004

namhi’s Pre-Budget submission has been sent to Government and to all members of the Dáil and Seanad. It states very clearly that Budget 2004 ‘should not repeat the mistake of Budget 2003 & should provide adequate funding to continue with the programme initiated in 2000 to eliminate waiting lists across the whole range of services for people with intellectual disability’.

It calls for minimum targets to be set to clear waiting lists over the next three years and for a sum of €35m revenue and an equivalent sum in capital for 2004 to create new residential, day and respite places.

Other key points included are:

• Continuation of programme of relocating people with intellectual disability from psychiatric hospitals & former psychiatric hospitals (de- designated units) to improved alternative care facilities.
• Full implementation of Bacon Report on Supply & Demand for Health Care Therapy Professions, 2001
• Review of current funding arrangements of service provision for people with intellectual disability
• End to means test for Carer’s Allowance
• Payment of Respite Care Grant in respect of all people being cared for
• Entitlement to a medical card for all children with a disability
• Immediate publication of the report of the Interdepartmental Group (set up over 5 years ago) to review the Disabled Drivers & Passengers Tax Concession Scheme

These items and others will be followed up by namhi before the Budget. Already namhi has met Minister for Social & Family Affairs, Mary Coughlan,TD and Minister of State at the Dept of Health, Tim O’Malley, TD. Budget Day is 3rd December 2003

2. Database Report

Following fast on the heels of the National Intellectual Disability Database Report, 2001 published last June, the report for 2002 was launched in October 2003. The figures published are disappointing as they show little inroads being made into waiting list figures at a time when significant funding had been made available to tackle waiting lists for residential, day and respite services. The Database Report for 2000 showed that 1,711 persons required a residential service over the 5year period 2001-2005, this has gone down to just 1,633 persons requiring a residential service for the period 2003-2007.

Demographic changes, an ageing population of people with intellectual disability with increased dependency needs, improved data collection techniques and the fact that the services have been historically under funded all help explain the slower than expected progress in this area. Nonetheless, it is essential that the figures are carefully checked and audited. namhi, Federation of Voluntary Bodies and the National Parents and Siblings Alliance as members of the National Monitoring Committee, set up in 2000 by Brian Cowan, then Minister for Health & Children to oversee spending on new developments in services have called for a detailed audit of the Database. The Database Committee is undertaking work on this at present.

In the meantime, namhi urges all parents to find out what is recorded on the Database for their son or daughter. Request for information relating to a specific health board region should be made in writing to the Intellectual Disability Database Co-ordinator for the relevant Health Board Area. namhi advises all parents / carers to speak with their local service provider about arrangements for collecting information about the current and future service needs of their children. For example, do they require a residential service now or at some later stage? Will they need a day service, supported employment service or vocational training when they leave school? How much respite care is required? It is important to ensure that all information on the Database is as accurate as possible and that it is regularly updated to take account of changing individual circumstances

3. Disability Bill

The Taoiseach has promised the Disability Bill will be published in November. Over the summer there has been much discussion in the media over what might be contained in the Bill and many members have expressed concerns that there may be some rowing back on the clear commitments given by the Taoiseach on 15th July to the Disability Legislation Consultative Group as reported in the last edition of namhi notes

The Limerick Parents Association met with Minister of State at Dept of Justice, Equality & Law Reform with responsibility for publishing this important piece of legislation, Willie O’Dea TD, in Limerick and he has assured them of his continued efforts between now and publication of the Bill to get agreement of his colleagues to the strongest Bill possible.

In the last few weeks before this Bill is published namhi and the following groups: Forum of People with Disabilities, Amnesty International, Downs Syndrome Ireland, NPSA, Irish Autism Alliance, Centre for Independent Living, Disability Legal Resource Project have launched a campaign  ‘Rights make the Difference’. As part of this campaign namhi is continuing with the petition launched during the Special Olympics in June asking all members of the public to call on the Government to enact legislation which will: ‘establish a set of enforceable rights to enable people with disabilities to achieve equal access, participation & outcomes in all areas of service provision & employment & to exercise the same rights and obligations as others to fully participate in Irish Society, including independent needs assessment, services, advocacy and redress. (Equal Citizens, Proposals for Core Elements of Disability Legislation, DLCG, Feb 2003). The weekend of the 7th, 8th, 9th November have been chosen as national petition signing days. If you wish to sign the petition or assist with obtaining signatures, please contact namhi.

4. Who Decides & How?

For many years, namhi has been deeply concerned with the inadequacies of the law in relation to decision-making by and for people disabilities. People with intellectual disabilities do not have clear rights to make decisions. The law on deciding who has decision-making capacity is very inadequate and arrangements for supported and substitute decision-making are non existent in many cases and inadequate and inappropriate in others. This means that the rights of people with intellectual disabilities may be infringed and it creates major practical difficulties for people with intellectual disabilities themselves as well as for their families and service providers

Recently the Law Reform Commission published a consultation paper on Law and the Elderly, which deals with the protection of vulnerable elderly people. Much of the analysis in that paper is relevant to people with intellectual disabilities and the Commission points out that many of the recommendations they make are also relevant to other adults with decisions making disabilities or who are otherwise in need of protection.     

namhi is pleased to announce the publication of a new document Who Decides and How?, which  outlines the issues involved and indicates its views on how this situation should be changed. It is namhi’s view that new legislation needs to be put in place to provide for decision-making by and for adults with intellectual disability. The scope and powers of the substitute decision maker must be limited to dealing with the manifested problem and must not involve unnecessary intervention in the lives of people with decision-making disabilities. The document will be officially launched at the end of November.

5. namhi Directory

A new updated namhi Directory of Services will be available from the end of November. This Directory will list all services and support groups in Ireland for people with intellectual disabilities across all health board regions and should prove an essential guide for families and professionals alike.

6. Forthcoming Events

namhi Midland Regional Health Board meeting:Tuesday 18th Nov, Tullamore Court Hotel, 8pm

namhi North Western Regional Meeting: Monday 24th Nov, Central Hotel, Donegal, 8pm

namhi Western Regional Health Board meeting Tuesday 25th Nov, Abbey Hotel, Roscommon, 8pm

namhi North Eastern Regional Meeting: Tuesday 2nd Dec, Fairways Hotel, Dundalk, 8pm

namhi Council Meeting: Saturday 29th Nov, Mont Clare Hotel, Dublin, 2pm

Me, Blue and You against Discrimination - namhi and Inclusion Europe European Traveling Art Exhibition, Bank of Ireland Arts Centre, Foster Place, Dublin 2, 12th – 23rd January 2004:

This is namhi’s contribution to the European Year of People with Disabilities, 2003 and will mark the official end of EYPD. The Exhibition has been traveling around Europe in 2003, displaying 60 pieces of art by people with intellectual disability from all over Europe. The pieces were chosen from over 800 entrants. Geraldine McEvoy & Mary Francis Leahy from Laois are two Irish artists who worked together on a piece displayed in the Exhibition. Another Irish artist, Finola Lennon from Dundalk also has a piece on display. All are welcome to attend the Exhibition.