NAMHI NOTES

ISSUE NO.21 - MAY 2003

In this Newsletter:

1. Funding Campaign: namhi campaign for extra funding 

2. Disability Legislation: “Equal Citizens” - Proposals for Core Elements of Disability Legislation

3. AGM Report: AGM Waterford 9th/10th May

4. Public Health Doctors: Impact of strike on Services

5. Standards: National Disability Authority Draft Standards for Disability Services

6. Advocacy Project: Progress report on namhi project

7. Award for President: namhi president honoured by Lord Mayor of Dublin

1. Funding Campaign

Since January namhi has had an active campaign to seek extra funding for services in 2003. The last Budget made no provision for new residential, day or respite places.

Members staged a public protest outside the official launch by the Taoiseach, Bertie Ahern of the European Year of People with Disabilities EYPD 2003, on 28th January to highlight the impact budgetary cuts would have on people with intellectual disability and their families. At regional meetings in Limerick, Cork, Kerry and Dublin in February and March people spoke of the effect the cuts were having, with parents receiving letters from service providers telling them that there would be no places available for their children leaving school next September and severe cut backs in respite care.

On the 11th & 12th February the issue was debated in the Dáil under a private members motion put forward by the Labour Party and supported by all opposition parties. The debate followed a very effective letter writing campaign to T.D.s countrywide. At this stage there is no public representative who can say they do not know of the crisis in services.

On the 8th April, namhi, National Parents and Siblings Alliance and Irish Autism Alliance held a major public rally in the Round Room of the Mansion House in Dublin. Over 900 people from all over Ireland some coming in specially organised buses attended the rally.

Despite these efforts no extra funding has been forthcoming and the anger of delegates was palpable at AGM in Waterford on 9th /10th May, when motions condemning the Government for its lack of action were unanimously passed. The fact that this was happening with the Special Olympic Games around the corner was not lost on members.

At a meeting of the National Council on the 24th May members agreed to the following proposal from the Mid West Alliance: That namhi demand the following from Government as a matter of urgency: -

1. Bring forward the Rights Based Disability Bill

2. Meet with namhi immediately to agree funding to meet shortfalls in services this year

3. Prioritise funding for disability services with multi-annual budgeting

4. Publish National Intellectual Disability Database Reports immediately

5. Agree that within the next three years, all waiting lists for services are eliminated

2. Disability Legislation

The Disability Legislation Consultative Group (DLCG) has produced a report “Equal Citizens” Proposals for Core Elements of Disability Legislation. This report outlines what disability groups want to see in a new Disability Bill. It summarises the consultations, recommendations and discussions undertaken in the last year by the DLCG.   

The need for rights based legislation is all the more clear in this time of severe budgetary constraints. namhi looks forward to the publication of the new Disability Bill and the Education for Persons with Disability Bill, both of which have been promised in this Dáil session. Copies of the DLCG report are available from namhi

3. AGM Report

A new format was tried at AGM this year. Along with the motions that are an integral part of every AGM, a theme was selected Promoting Good Health for People with Intellectual Disability. Prof. Mike Kerr, University of Wales, an expert on the health needs of people with intellectual disability and promoting good health practices gave the keynote address. Three workshops on general health, mental health and the older person with intellectual disability heard from speakers, expert in their own field. It is intended to build and develop on this format for AGM 2004 which will be held in Dundalk on the 16th and 17th April.  

Thanks are due to all our members in the Waterford region who took stands at AGM and to the Waterford Association for their lovely gifts to delegates. A special word of thanks is due also to Mary Davis, CEO of the Special Olympics World Games who took the time to address members on the Friday evening and who was thanked with a standing ovation. namhi wishes herself and all the athletes taking part a very successful games.      

4. Public Health Doctors

Public Health Doctors have been on strike for the past number of weeks and it is likely that the strike will continue for sometime. The Irish Medical Organisation has informed namhi of areas of work which are not being covered during the strike and which have an impact on people with intellectual disability and their families.

Public Health Doctors are involved in the assessment of people for various allowances including Domiciliary Care Allowance, Disabled Drivers Tax Concessions, Disabled Persons Housing Grants and discretionary medical card assessments. There is also an issue that no public health medical advice is available to various institutions if there are cases of winter vomiting bug or outbreaks of other infectious diseases. namhi looks forward to a speedy resolution of the dispute.   

5. Standards

The National Disability Authority has produced a second draft of National Standards for Disability Services (April 2003). This draft has taken on board the views of people with disabilities, their families, carers, their representative groupings and service providers following an extensive consultation process. namhi was one of the many groups and individuals that made submissions on the draft standards. Frieda Finlay, Hon PRO sits on the NDA Advisory Committee on Standards.

The new draft standards will be piloted in 20 services over the next 6-8 months. It is expected that following final agreement of the standards that the process of implementing them will commence in 2004.

Standards will cover disability services for children and adults with autism, intellectual, physical and or sensory disability funded by the Department of Health and Children. Standards will apply to day, residential, respite training and home support services. Service providers will have to meet mandatory criteria to register as an approved service.

namhi has long supported agreed national standards for services and was the first organisation to produce a set of standards: “Standards of Care” in 1999 under the auspices of the Parents Committee.  The majority of services will have no problem implementing these standards as they are already operating their own internal standards. However, it should be recognised that some of the standards have resource implications and that funding must be made available to achieve the agreed standard. Standards will encourage services to improve the quality of care to service users and their families, but they will require independent monitoring and enforcement.  Further information can be obtained from the NDA website - www.nda.ie

6. Advocacy Project

The namhi Advocacy Project has been in place since January. Lisa Kelly, Advocacy Officer has been extremely busy building a picture of what is currently happening in the world of self-advocacy. She has visited and talked to many groups around the country and is very interested in hearing from self-advocates directly. Frontline magazine has kindly agreed to give some space in each edition for People’s Pages to increase awareness of self-advocacy in Ireland. Contact Liza at namhi if you want to make your views published.

In addition to this work a very successful training day was held in Dublin on the 10th April called “People with Intellectual Disabilities as Consumers of Support Services”. Over a 100 self advocates, their support workers, parents and staff attended the training day and received a Resource Pack. Due to the demand for places it is intended to run another day in the autumn. Mr. Tim O’Malley, Minister of State with responsibility for disability services, opened the seminar.

7. Award for President

Jean Spain, President of namhi has been awarded the Lord Mayor of Dublin Award for 2003 in recognition of her long service on behalf of people with disabilities. These awards were established in 1989. Jean is a parent of a young woman with a mild learning disability and has been active for over 20 years in namhi and the Special Olympics movement as well as in her own community running summer projects for children with disabilities. We congratulate Jean on this prestigious award, which will be presented on the 18th June in Dublin