The Research Role of the NDA

M. Claire O’Connor, Director, National Disability Authority

On behalf of the NDA I would like to welcome you all here today. This day marks an historic milestone for disability research in Ireland. It is the first in what we hope will become a long and distinguished series of NDA Disability Research Conferences. The focus of this year’s conference is on ‘Using Emancipatory Methodologies in Disability Research’, an appropriate and extremely important topic not only to us at the NDA but, judging by the overwhelming response to the conference, to many people working in the area of disability research in Ireland. This conference today is the strongest and most visible indicator to date of the NDA’s intention to position ourselves at the centre of disability research in Ireland. As a National Disability Authority with an explicit mandate in the area of research, the past two years have seen the NDA develop its potential to a point where the results and findings of both in-house and commissioned research have begun to emerge and we are now hosting the first ever Disability Research Conference to be held in Ireland.

The research mandate taken up by the NDA evolved in the context of certain key events since the mid-1990s, namely:

1996 Report of the Commission on the Status of People with Disabilities;
1999 NDA Act;
2001 NDA Strategic Plan.

The first significant step in this process emerged from the damning report on the state of disability research in Ireland given by the Commission on the Status of People with Disabilities in its 1996 report ‘A Strategy for Equality’. The Commission stated that:

Perhaps one of the most telling indications of the neglect of people with disabilities is the silence of relevant official statistics... Funding for research into disability issues is small, there appears to be little if any coordination or prioritisation, and the dissemination of information on current and completed projects is patchy (A Strategy for Equality, 1996).

Having proposed the establishment of a National Disability Authority, the Commission recommended that :

The proposed National Disability Authority be empowered to conduct and commission research on disability issues and that adequate funding be allocated to extend both the scope and volume of current research (A Strategy for Equality, 1996).

Following the Commission’s recommendations, a process of mainstreaming services for people with disabilities included the enactment of legislation, which paved the way for the establishment of the National Disability Authority. The NDA Act (1999) added statutory weight to the research mandate outlined for the NDA by the Commission.

The NDA Act (1999) states that:

The NDA can undertake, commission and collaborate in research projects and activities on issues relating to disability
The NDA must assist in the development of statistical information appropriate for planning, delivery and monitoring of programmes and services

In drafting its first Strategic Plan, the NDA sought to build on this legislative mandate by establishing core principles that would underpin and direct its research role. The plan, entitled ‘A Matter of Rights’, states that any research which the Authority undertakes, commissions or collaborates in, should be grounded in:

The social model of disability
The empowerment of people with disabilities

The second key principle underpinning the NDA’s work, the empowerment of people with disabilities, creates very specific demands when applied to a way of doing research, all of which are central to today’s proceedings and which have become prominent features of our work in this area. Among these are:

The inclusion of people with disabilities in the research process
Emancipatory research frameworks; and participatory methodologies

In relation to the specific work laid out in the Strategic Plan, a research dimension is identified under three of the four NDA Strategic Priorities. Under Strategic Priority 1, which states that the NDA will “Develop policies that promote the equal status of people with disabilities”, the research component includes projects that will:

Develop baseline quantitative and qualitative data
Develop protocols for effectively including people with disabilities in all aspects of research which affect them
Set up systems for the effective dissemination of disability research

In developing baseline data, through which change can be benchmarked and monitored, we have recently begun preparations for a comprehensive national disability study to establish the level of disability in Ireland and the situation of people with disabilities in our society. In this initial phase the research aim is to develop an appropriate research instrument for use in a national survey to establish the prevalence and impact of disability in Ireland. The second research element under Strategic Priority 1 culminates today in the launch of our ‘Guidelines for Including People with Disabilities in Research’, which were developed in-house after consultation with groups of people with disabilities who had undertaken their own research, and with others involved in producing disability and other types of social research. The aim was to produce a tool for researchers, which would outline practical ways in which people with disabilities, can and should be included in their research, and we hope that it will be influential in increasing the level of inclusive disability research conducted in Ireland.

The final research element of Strategic Priority 1, establishing systems for the effective dissemination of disability research, incorporates several activities including:

The NDA Postgraduate Research Scholarship – which this year received a significant increase in funding, giving our three Scholars of 2002 research funding of €12,700 a year for up to three years
The NDA Research Promotion Scheme – which provides support to disability and community groups to undertake research on disability issues, and which will be officially launched at the conference close later today
The establishment of an NDA register of researchers
A feasibility study into the production of an NDA research journal

A final element in setting up effective dissemination systems, which provides a focal point for much of our research and other work, is the new NDA website, the launch of which I am pleased to announce today. Funded with the help of the Information Society Committee in CMOD, NDA now has an extensive website that is fully accessible for users with disabilities and, in what is a first for the public sector, our system for updating our site is fully accessible also. Some of the features of our new site are:

The NDA Library catalogue
NDA Publications that are available for download
NDA’s Find Out Europe project, which gives information on how the EU affects disability policy
NDA’s Policy, Standards and Research papers
Information on our Register of Researchers, ‘Guidelines for including people with disabilities in research’, and funding opportunities available for research through the NDA
Online discussion forums
And information on any tenders, consultations or events in train at the moment

The NDA sees the website as central point around which we can build an online community for people involved with disability issues.

Under Strategic Priority 2 of A Matter of Rights, the NDA’s first strategic plan, which states that the NDA will ‘Influence attitudes in Irish Society’, there is again an explicit research component which outlines that we will: “Undertake benchmark surveys on perceptions of and attitudes towards people with disabilities as a basis for monitoring change”. As many of you will be aware, the NDA undertook such a survey in spring of last year, which measured the attitudes of the general Irish public using a nationally representative sample. Preliminary findings were made available through a summary report last October. However, I am pleased to announce the launch and availability today of the fully published report, which contains a full outline and analysis of the findings and their implications. The availability of this data establishes a benchmark against which to measure change, and will allow for the effective monitoring of targeted follow-up measures and actions to address negative attitudes.

Strategic Priority 4 in our first Strategic Plan, which states that the NDA will ‘Assure best practice in services for people with disabilities’, also contains a specific research component. Under this Priority, it is our goal to:

Identify programmes and services for people with disabilities, which require to be provided but being provided or are inadequately provided.

To this end the NDA has recently commissioned a series of service mapping projects in our current priority policy areas (education, health, transport, training and employment). The findings of these projects, which will begin to come on stream in the New Year, will identify the range of services currently available for people with disabilities, and the areas in which gaps exist. The findings will also facilitate follow-up measures such as service evaluations, leading to recommendations to Government about the need for and availability of services, and on the suitability of services where they exist.

That provides a brief outline of the background of the NDA’s research mandate, role and key activities. While I have already mentioned some in passing, I would like to remind you again of the work that is being launched at today’s conference. Available from today are the following:

NDA Public Attitudes to Disability in the Republic of Ireland final report;
NDA Disability Related Research in Ireland 1996 – 2001 (2^nd Edition)
NDA Guidelines for Including People with Disabilities in Research;
The new NDA website (www.nda.ie)
The announcement later of funding under the NDA Research Promotion Scheme 2002

Disability Related Research in Ireland 1996 - 2001, now into its second edition, was undertaken to map out the disability research landscape in Ireland, particularly to gauge whether any progress had been made since the Commission report in 1996. While the report identified over 400 individual pieces of research in the field, indicating a significant level of activity, major concerns were identified which suggest that a great deal remains to be done. The three major concerns highlighted were:

Still no evidence within the field of Irish disability research, of a co-ordinated approach, a coherent work programme, or substantial impact;
Few studies which were based explicitly on a social model of disability;
Little awareness of emancipatory methodologies.

In conclusion, while these concerns have identified the fact that there is much work to be done before we have a coherent overall framework of disability research in Ireland which is being fed into by inclusive, emancipatory research on priority areas, there is also much cause for optimism. We are now in a position where many of the shortcomings, having been identified, can begin to be addressed. The NDA sees its position at the heart of what is becoming a turning point for research in the area; where more resources are becoming available; where the focus on more inclusive methodologies based on the social model of disability is marking a shift in thinking for researchers; and where there is quite clearly an energy and enthusiasm to take up the challenge – as evidenced by the amazing response to this conference.

As I said at the outset, this day marks not only an historic milestone for disability research in Ireland, but also an excellent start to a new era. I’m very pleased that so many of you could join us on this occasion and hope you have a very interesting and enjoyable day.