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Inclusion Ireland backs DEPA

category national | rights, freedoms and repression | news report author Monday April 03, 2006 12:51author by Miriam Cotton - Disability Election Pledge Allianceauthor email info at inclusionireland dot ieauthor address Unit C2, The Steelworks, Foley Street, Dublin 1 Irelandauthor phone 01 855 9891 Report this post to the editors

Challenge to the Disability Act 2005 gathers momentum

On Saturday, the Disability Election Pledge Alliance secured a significant boost to its campaign against the Disability Act 2005 at the AGM of Inclusion Ireland (formerly the National Association for the Mentally Handicapped in Ireland/NAMHI). The resolution was proposed by the Limerick Association of Parents & Friends and seconded by the Asperger Syndrome Association of West Cork. A number of speakers addressed the conference in support of the motion which was resoundingly passed by the hundreds of delegates present.

The need for appropropriate rights-based legislation was starkly underlined by the other motions submitted to the conference, which reflected the ongoing difficulties that carers and people with disability are forced to struggle with:

"The AGM calls on the government to front load funding for intellectual disability services for the next five years, commencing with E250,000 million, with an appropriate capital sum, in order to make real inroads into waiting lists for new residential, day and respite services"

"The AGM calls on the Minister for Health & Children to eliminate waiting lists for residential care, by increasing available resources, both human and financial to ensure that people with intellectual disability can access residential and respite places when they wish and require them , and not when it has become an emergency response."

"This AGM calls on the secretariat of Inclusion Ireland to liaise with all relevant Iirish disability organisations well in advance of the next budget in order to prepare a joint pre-budget submission to government requesting the government to allocate sufficient monies to provide appropriate and necessary therapeutic services to all people with disabilities in accordance with international best practice and to put the necessary educational facilities in place in order to do so on an ongoing basis."

"This AGM calls on the Minister for Health & Children to implement the National Disability Authority national standards for disability services and put in place the relevant authority to oversee these standards."

"This AGM is seriously concerned at the action of the Health Service Executive in moving intellectually disabled clients from existing residential care to nursing homes, in the absence of enforceable contracts in respect of appropriate individual care, or continuity of any care."

"This AGM calls on the secretariat of Inclusion Ireland to bring about formal debate, which will lead to national guidelines for service providers to support people with intellectual disability in managing their disability allowance, thereby standardising procedures for service providers, ensuring transparency, accountability and equity for all people with an intellectual disability."

The outgoing Chairperson of Inclusion Ireland, Mr Stephen Kealy, speaking on the subject of funding for services, made the following observations to delegates in his address to the conference:

"The National Intellectual Database identifes that over 60% of persons withintellectual disabilities are awaiting new or enhanced services or will require such services before 2010. On teh basis of current funding it is difficult to see how these service requirements will be met within this time line. During discussion with the HSE and the Department of Health and Children key words were used -

Person Centredness

These words repeatedly presented during discussion not only in the context of the cost of services but also of helping parents with their son or daughter within the family home. What is critically important to this association is that these words are not a harbinger for cheap services and supports which contribute to fewer quality of life options for people with intellectual disabilites. The service component must have the right fit for parents, the funder and the person with intellectual disability. There is something wrong, isn't there, about the sequence I have just presented. The sequence should really read the person with intellectual disability, the family and then the funder."

In her report to the conference, Ms Deirdre Carroll referred to the Disability Act 2005:

"One of the key events last year was the enactment of the Disability Act 2005. This time last year members voted to reject the then Bill as it was not a rights-based piece of legislation. Today we have a Disability Act which in the view of Inclusion Ireland falls far shrot of the vision imagined by the Commission on the Status of People with Disabilites in its report "Strategy for Equality" published thenyears ago this year.

The Disability Legislation Consultative Group of which Inclusion Ireland was an active member (establishe by government in 2001 and to consult on new legislation) pointed out 5 core issues which they said must be addressed before the then Bill proved acceptable to people with disabilities and their families. Unfortunately, only minor and technical amendments were accepted and Inclusion Ireland, along with the Forum ofr People with Disabilities and teh NPSA, withdrew from the DLCG as it was unable to continue to be part of a process whereby people were consulted but not listened to.

Inclusion Ireland has written to the Minsiter with responsiblity for this Act,Mr Frank Fahey TD, outlining our views and have suggested to him that a new representative structure with clear terms of reference be established to have a consultative and monitoring role with respect to the Act. The Minister, in his reply to Inclusion Ireland last January, has acknowledged the advantages of such a group. Yet at the same time makes it clear that "there are no proposals for changes in such a recently enacted measure."

It remains now for the Disability Election Pledge Alliance to make it clear to the Minister that this response is as inadequate and inappropriate as the Act itself.

Related Link:
author by M Cottonpublication date Mon Apr 03, 2006 13:53author address author phone Report this post to the editors

Inclusion came up trumps as usual in the organisation of their conference. There were some fantastic seminars and workshops including one excellent one presented by Mary Kealy, the Chief Executive Officer of the Brothers of Charity Services in Co. Clare.

Entitled 'Promoting people's quality of life with services in their own communities', Kealy and her co-presenters discussed the situation of a young woman living in Kilrush. The Brothers of Charity service is straightforward in that it is based on the individual designing their own community support programme in the context of an approach called 'a service without walls in the community'. A programme of activities and social involvement is developed based on the person's stated interests and preferences. By liaising on her behalf with the local drama group, the pub, the village shop etc, we saw how Mary (not her real name) had established great links within her own community and was now able to acess and participate in community life to an extent that had been impossible previously. The extent of the goodwill that had become apparent within the community was very encouraging to all parents present at the workshop. Kealy also told how the programme had been immensely beneficial to the local community who had gained a vastly improved understanding of the needs of the local population of people with disability. Prejudices had dissolved in many instances and great feeling of inclusion, belonging and mutual benefit had been established.

This approach is necessarily time-consuming and painstaking as it must also take account of the sensory, physical and intellectual needs of the person but Mary Kealy explained that, over time, because of the accumulation of experience and knowledge within the community, it had become much easier to create integrated programmes for people.

Brothers of Charity website in Clare:

author by M Cottonpublication date Mon Apr 03, 2006 18:26author address author phone Report this post to the editors

Deirdre Carroll, Chief Executive Officer of Inclusion Ireland, also spoke about mult-annual funding and outcomes inconsistent with increased spending. She said :

'Multi-annual funding also announced as part of the national disability strategy was welcomed by Inclusion Ireland at AGM last year with E900million to be rolled out between 2006-2009. This money is proving difficult to pin down and waiting lists are growing as shown by the NIDD figures 2005. In recent years admittedly, large sums of money have been allocated to Intellectual Disability services. Yet we hear of services under severe stress and service providers feeling compromised in their ability to provide for those already receiving services never mind rolling out new services.

Parents are having huge difficulties getting respite care. Those who have children with any type of disturbed or challenging behaviour, i.e. those who need a break most are finding it impossible and have all but given up. This topic was articulated very clearly at our annual Parent's conference last November in Kilarney. On a brighter note the extension of the respite care grant to all those caring fulltime is welcome and one which I believe our members through their campaigning work can take credit for."

Conforming to a now familiar pattern of 'hit and run' public addresses by government representatives, Tim O' Malley, Minister of State at the Department of Health & Children who gave the address of welcome in Limercik, did not stay around long enough to respond to these and many other urgent issues raised at the meeting. Minister John O' Donoghue did exactly the same thing at the parents conference in Kilarney last November - vanishing in a puff of smoke before anybody could ask him, too, to explain the discrepancy between diminishing services and increased investment.

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