Chapter 3. The National Disability Authority and the Pilot Exercise
The National Disability Authority (NDA) was established June 2000 to “promote and help secure the rights of people with disabilities by influencing public policy and legislation and by working to ensure that services are of the highest quality”. One of the major challenges the NDA sees to the successful achievement of its mission is the lack of data on the lives of people with disabilities in Ireland. To help fill this gap, the Authority set out as an objective in its Strategic Plan for the period 2001-2003 the establishment of “baseline quantitative and qualitative data to inform and underpin the planning and development of policy and services for people with disabilities in Ireland.” (Strategic Priority 1, Objective 6, NDA 2001).
In pursuing this objective the National Disability Authority has commissioned the present exercise, which involves the preparation and pilot testing of a draft disability survey questionnaire. This should make a significant contribution to a full-scale national survey in due course, and be an important milestone on the way towards that survey.
The NDA is committed to two core principles in relation to its research programme and its work more generally: a social model of disability and empowerment of people with disabilities, including its research (NDA 2000, p. 16-18). Disability is understood as a social construct, which is built upon impairment but which is not a necessary consequence of impairment, which has been created socially and historically and is amenable to change. The key focus is on society and it disabling structures, rather than on the person or persons with impairment. This, and the NDA’s commitment to the empowerment of people with disabilities, underpin the research it commissions, and its approach towards both a national disability survey and the current preparatory exercise.
Importantly, the pilot survey instrument is to be based on a new classification system, the International Classification of Functioning, Disability and Health, known as the ICF for short. This has been developed by the World Health Organization, moving on from the previous classification system it employed called the International Classification of Impairments, Disabilities and Handicaps (or ICIDH). This classification, and its implications for the design of an appropriate survey instrument, are discussed in detail in the next section.
So in summary the task addressed in the current project has been to develop an appropriate research instrument to establish the prevalence and impact of disability in Ireland, based on the ICF. This has entailed:
- Reviewing existing research instruments based on the ICF, and its predecessor the ICIDH 2, and used in national surveys in other countries;
- Liaising with the WHO, and with Professor Jerome Bickenbach, an International expert on the ICF who is acting as consultant to the NDA;
- Consulting with relevant stakeholders in the area of disability;
- Designing a draft questionnaire which could be used for an Irish national disability survey;
- Piloting the draft questionnaire;
- Preparing a comprehensive report and set of recommendations for the NDA based on the results of the drafting and piloting process, including a final version of the questionnaire and discussion of training needs.
A core element throughout the project has been consultation with relevant stakeholders. An Advisory Group established for the project met on a number of occasions and made a very valuable input, for which the authors are very grateful . Several seminars on the ICF with a leading expert from the WHO, Jerome Bickenback, organised by the NDA were also very valuable. A structured consultation process around the pilot survey itself formed a key element of the project, as described in Section 6. The results of the pilot survey, as outlined in this report, will also be presented and discussed at a seminar of key stakeholders.
Since a key objective of the approach to be adopted in the pilot exercise was to ensure a close alignment with the framework set out in the ICF, we now turn to a detailed discussion of that classification.
- The members of the project Advisory Group were as follows: Anne Good (NDA), Gerry O'Hanlon and Gerry Brady (CSO), Rob Kitchin (NUI Maynooth), Roy McConkey (University of Ulster), Frank Mulcahy (European Disability Forum), Mairide Woods (Comhairle), and, in the initial stages, Donal Toolin (Forum for People with Disabilities).