Appendix 2: Details of the Monitoring Process & Learning from the Project

How the Organisational Framework for the Study Evolved

On 15 December 2008, Marcia Rioux addressed a workshop with invited disabled people’s organisations and others to learn about the Disability Rights Promotion International project and discuss its possible benefit to New Zealand. The project investigates legal systems, individual experiences, and societal attitudes to monitor rights of disabled people. In summary, those disabled people’s organisations present were in favour of the DRPI project being used in New Zealand.

Over the next year leaders from the disability sector continued the conversation with government about implementing the DRPI project. Subsequently, four or five DPOs met with the Office for Disability Issues to ascertain if funding was available to proceed with the project in New Zealand. One of the criteria for the funding was for a coalition to be formed. This consisted of DPA, People First New Zealand, Deaf Aotearoa NZ , ABCNZ, Ngāti Kapo and Nga Hau E Wha. The coalition met for several months and then were in a position to begin the project.

The study progressed in an ad hoc and organic way with key personnel coming on board at various times. The project commenced before the funding came through so a lot of goodwill toward the project was in evidence with people paying from their own pockets and significant time lags for reimbursement. As we know disabled people are often economically disadvantaged and under employed so this was a major issue for people who could not afford to self fund.

The Project Management Committee (PMC) consisted of representatives from the partner organisations. The role of the PMC was to organise the overall logistical management of the project including selecting the Monitors, Data Analysis team (see appendices for a list of the project personnel) and appointing a Project Co-ordinator;

Project Co-ordinator’s Role

The Project Co-ordinator was offered their position two weeks before the training workshop was due to begin. He immediately recruited 3 of the 4 Site Co-ordinators from his networks. The last Site Co-ordinator was appointed a few days before the workshop.

The Monitors were recruited over the next 2 weeks using the Project Co-ordinator's, Site Co-ordinators' and Project Management Committees' networks. Many people approached would have committed to the monitoring had there been more time to arrange to be away from home for 6 days.

The Project Co-ordinator’s role included:

• Overseeing the Monitoring work in the field and assisting with the development of field work modalities
• Assisting with identification of potential Site Co-ordinators, Monitors, and interviewees
• Plan and implement the dissemination of the report in appropriate formats.
• Oversee day-to-day coordination of the project, including administration of the budget
• Participate in the organisation of and attend training seminar
• Coordinate, supervise & support interviews in field (with Site Co-ordinators)
• Conduct site visits, as necessary
• Coordinate feedback meeting(s) with Monitors (with Site Co-ordinators)
• Participate in data analysis, report writing & publication

Data Analyst and Data Analysis team

The data analyst was recruited two weeks before the project began. She attended and participated in the training workshop. Two of the Monitors expressed interest in becoming involved in the data analysis. Another disabled data analyst later joined the team. The Data Analysis team:

• Were trained in the use of NVIVO and took part in a series of data analysis meetings over the course of the project.
• Attend training seminar, three of the four Data Analysis team members attended
• Liaised with Project Co-ordinator regularly (assisted with ensuring sample balance & interview quality control)
• Attended feedback meetings with Monitors and sought input on the draft report.
• Organized and supervised the transcription and translation (if necessary) of interview recordings.
• Established and maintained systems to safeguard the confidentiality of paper, and electronic interview records
• Coded monitoring data and generated reports using NVIVO software (overseeing others to assist with this work)
• Conducted qualitative and quantitative analysis of data
• Wrote draft report & finalized report for publication
• Participated in review(s) of the report by the Project Management Committee

Capacity Building

An intended outcome of the DPRI framework is to build the capacity of the people involved in the project. A team of disabled people with the ability to conduct research now exists. To further enhance New Zealand’s reputation as a world leader in the field of participative studies with disabled people, disabled people should continue to be invested in. In the spirit of true capacity building it is recommended that a member of the Data Analysis team is employed as a research assistant so that they can observe, participate in and further develop skills in this area.

The Training Workshop

The initial activities of the project involved 6 days of intensive workshops setting the tone and substantial grounding for the project.

The workshop consisted of background information about Disability Rights Promotion International and introducing Monitors to the concept of Disability as a Human Rights Issue.

Marcia Rioux from Disability Rights Promotion International facilitated the training workshop. In advance DRPI had developed an interview questionnaire, a training manual for the Monitors, information and consent sheets, and a coding schedule. These items are internationally standardised. They provided technical advice and assistance regarding the organization and administration of interviews.

Most of the time was spent learning the practicalities of interviewing including training on interview techniques, role play and mock interviews to practice skills. Intensive training was provided on how to do an interview and to use the interview guide, techniques of interviewing, finding the interview subject using the snowball method, potential problems in the field, maintaining confidentiality, and the organization and administration of the monitoring project. The importance of gaining the consent of the participants both for the interview and of audio recording as well as the methods to ensure confidentiality were a central part of the training (consent and confidentiality procedures are outlined in the consent forms in Appendices).

The formation of monitoring teams was decided at the training and logistical details of the field work was also covered during the seminar.

The topics of the workshop included a wide range of issues including the following: a basic understanding of human rights and disability from a human rights perspective including the distinction between a charitable approach and a human rights approach to disability.

Guest speakers were:

• Hon. Tariana Turia, Minister for Disability Issues. The Minister attended the conference to announce three years of government funding for the project. New Zealand is the first country in the world to receive government funding for the DPRI project.
• Professor Ron McCallum, Chair of the UN Committee on the Rights of Persons with Disabilities. Professor McCallum outlined the role of the monitoring committee, how it works, and how the committee gives great weight to reports from disabled people and their organisations. He emphasised that one ‘shadow’ report per country is best.
• Mr Don Mackay, Chair of the UN Ad hoc committee which drafted The Convention on the Rights of Persons with Disabilities. Don Mackay explained The Convention creation process.
• Dr Jan Scown, Director on the Office for Disability Issues. Dr Scown explained the ratification process and the ways in which The Convention fits with existing legislation.

The workshop was attended by the people and organisations listed in appendix 8 apart from one person who came on later as part of the Data Analysis team.

The Monitoring Sites

Four monitoring sites were chosen. They were Auckland, East Cape-Bay of Plenty, Wellington and Nelson –Marlborough (later expanded to include the rest of the South Island. There were a number of considerations behind the choice. First, the committee wanted to ensure there were opportunities for a good representation of disabled Maori and Pacific people in rural, provincial and urban settings. Second, the committee looked for sites where there might be groupings of Maori with impairments who might be particularly hard to reach, for example, Maori with learning impairments. Third, the committee wanted to tap into other hard-to-reach groups eg homeless. Finally, there was a desire to reach disabled people who did not often get interviewed - to extend beyond the ‘usual suspects’.

New Zealand is a relatively affluent nation with a history of social protection schemes. It ha a history of ad hoc provision with regard to social support services. It is likely that regional variations do exist in New Zealand. The choice of sites produced a degree of regional difference however exploration of the various sites within different categories of analysis did not provide conclusive results.

Monitoring Meeting

There were 3 meetings of the Monitors and, additionally, there was a meeting of the Site Co-ordinators on the last day of the training workshop.

Learning from the Research

Setting up the software and training analysts was more time consuming than anticipated, however we now know how to streamline the process. The project got off to a slow start, however, efficient interview collection and transfer processes evolved during the fieldwork process to accommodate changing circumstances. These processes will stand the DPOs in good stead when setting up a framework for future research.

The Disability Rights Promotion International is an international standard. Some of the categories are not relevant to a developed western democracy like New Zealand and do not need to be included in future research. For example, the distance to the police station in New Zealand is a function of rural or urban living, all houses in New Zealand have to conform to a building code so the question of what housing is constructed of is irrelevant and water is available in all New Zealand homes. Homelessness is an issue for some disabled people. However, New Zealand does not have statistics on this. In an effort to include homeless people the Wellington Site Co-ordinator approached a number of organizations in Wellington and the Hutt Valley, including Evolve, Desperate and drop-in centres for mental health consumers and street people. These approaches were unsuccessful. Measures of deprivation more relevant to New Zealand society should be developed. More relevant indicators might be access to public transport, opportunities for appropriate employment, the ability to procure fresh fruit and vegetables, use of food banks by disabled people and privacy issues. Participants were asked to choose one category of impairment. Choosing a single category proved difficult for participants and also means that the demographic information on type of impairment that can be extracted from NVIVO is limited as the analysis instrument did not reliably measure what it was intending to measure. In future it is suggested that impairments are described by the participants and the sampling frame is systematically monitored to ensure a representative spread of impairment.

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