interview with Marija Dragovic, Project Assistant, Association of Students with Disabilities (ADS) Belgrade
The Association of Students with Disabilities (ADS) of Serbia network has a good amount of experience in conducting research as they have either given or worked as a partner in three surveys1 on disability. The first one was in 2001 on the promotion of inclusive higher education in Southeast Europe. The second was conducted in December 2003 to January 2004, dubbed the “Promotion of Inclusive High School Education” in Serbia and Montenegro. The last “survey” was named “Disability is a Matter of Human Rights”, looking at individual experiences related to the discrimination of people with disabilities, conducted from November 2005 to February 2006. In their “surveys“, ADS used a wide definition of disability, which also includes people with chronic medical problems.
This last “survey“ was conduced amongst the population with disabilities and had a sample of 545 people covering 15 municipalities in Serbia and 12 in Montenegro. The questionnaire contained both multiple-choice questions and those that people could answer themselves and it consisted of 5 different parts, each covering a different area of interest.
This research was conducted before the anti-discrimination law on disability was passed. ADS was part of the team drafting the law, so we were aware of it, but the general population was definitely not and our research reflected this. Yet, at that time our specific reason for carrying out this kind of “survey“ was to see if and how we should offer legal aid services to people with disabilities, to see if they were ready to use it. So, one of the aims of the survey was to see how to design legal aid services. We are still working with the results we collected, analyzing them, in order to develop this kind of service.
How did the implementation go?
There were 14 people who administered the “survey“ throughout the municipalities in Serbia and Montenegro. We wanted to include all the actors involved in problem of discrimination; line ministries, institutions and city services, but we ended up conducting it in cooperation with centers for social welfare, the Ministry of Human and Minority Rights and the People’s Office. The common reply from the other stakeholders was that people with disabilities were not under their jurisdiction.
In terms of timing, it took us a long time to formulate the questionnaire, more than a month in total. The time it took to get answers from the participants varied but the topic of discrimination can be very personal and people have lots of bottled up emotions so they often have a need to speak at some length.
Once we had the responses from all survey takers, we had to begin the data analysis process. A psychology student assisted us in the analysis of the data as he had experience in conducting surveys. He also helped to teach us how to use SPSS, a statistics computer program for analyzing data.
Which results would you stress?
The understanding of discrimination varies widely amongst people. Some people with disabilities even thought that discrimination meant not receiving the benefits they were entitled to; others understood it as being insulted on the grounds of their disability by a person without one.
It is also striking how a personal experience of discrimination can differ even if the situation and the personal background are practically the same; some people just do not recognize it as such. However, it took us by surprise that the feeling of discrimination was the highest in the most unexpected of places: in hospitals and at physical rehabilitation facilities. At the same time, we expected to find a much higher level of respondents who felt discrimination. Instead we have some 60 percent who answered affirmatively that they have not ever experienced discrimination.
Another important finding: the readiness to go to court with an individual discrimination case was significantly higher among those who felt that they had not been discriminated against. That says a lot.
What are you going to do with the findings of the survey? Will you present it to the general public through the media? Or do you submit the results directly to state institutions and bodies?
For this “survey“ we will publish a brochure in which we present the results. We are also planning round tables across the country, gathering several municipalities together; putting the local NGO’s together with representatives of local authorities.
What were the specific problems?
The length of the questionnaire is definitely something to seriously consider. Looking at it now I see that in some places we have repeated things or have asked the questions in such a way that the responses are unusable. This is where the role of an expert is crucial: they act as a guide, putting boundaries on the questionnaire. In addition, they can make sure that the questionnaire matches the general purpose you are trying to achieve with your research.
Yet, the more resounding problem is how to get a sample from a wider population. There is no database you can use, with names and contacts of people with disabilities of all ages and educational and geographic backgrounds. So, a wider sample was not really possible even though we tried our best to achieve it, even using the snowball method2.
Not having a large source of data, we were forced to get our sample from the members of other organizations of people with disabilities that were willing to cooperate. Anyway, having mainly DPO members as the sample also produced biased results. Members of the disability movement are far more aware of human rights issues and discrimination than other people with disabilities and the results show that. For example, 26% of the respondents had higher education, whereas according to data shown in the Poverty Reduction Strategy Paper for Serbia (PRSP), only 7 percent of people with disabilities completed university - a striking discrepancy. The results of the “survey“ also showed that in answering questions pertaining to household income, 42% of the respondents were below the official poverty line, whereas according to the PRSP, it is over 70%.
What would be your specific recommendations, by different stages in conducting a survey: the concept design, the implementation, results analysis, and the dissemination and use of the findings?
Only people with specific experience and training can administer surveys, there is no question about it. Also, in “surveys“ like this, next time we will include the definition of the key concept; in this case, discrimination. If the participants had heard the definition of discrimination, their position might have been more clear and therefore of more use to us.
Also, the team of people administering the survey needs to be very well informed on the philosophy and the ideas behind disability issues. For example, they should be able to explain the social model, plainly and with ease. Also, whoever is planning to do a survey should definitely work with an expert to design the questionnaire. By expert, I mean psychologists and sociologists who have had experience carrying out this kind of research.
1. The research conducted is more of a census of DPO members than a survey as the sample was not determined randomly.
2. The snowball sampling method is a special non-probability method used when the desired sample characteristic is rare. It may be extremely difficult or cost prohibitive to locate respondents in these situations. Snowball sampling relies on referrals from initial subjects to generate additional subjects. While this technique can dramatically lower search costs, it comes at the expense of introducing bias because the technique itself reduces the likelihood that the sample will represent a good cross section from the population. More information available at: http://www.statpac.com/surveys/sampling.htm
THE DEVELOPMENT OF DISABILITY STATISTICS: EXPERIENCE FROM HONDURAS
Thierry Gontier, disability statistics expert
Thierry Gontier, a statistician who worked in many countries on disability issues, spent many years in Honduras working in the field of disability. While in Honduras, Mr. Gontier was contracted to work with the national statistical institute (INE) to analyse the results of a large survey conducted with a disability module in 2001. In a discussion with Mr. Gontier about his experience, he explains how this project developed and what the significance of obtaining disability data was for Honduras.
Why did the government initiate the survey?
Importance of having disability data was identified by civil society in Honduras. When drafting the Poverty Reduction Strategy Paper in 2000, civil society pointed to the need for the creation of a national information system for persons with disabilities and to incorporate a module on disability within surveys produced by the National Statistical Institute on various aspects in order to identify among other things geographical location, socioeconomic and demographic characteristics of the population with disabilities. In addition, there was a large consensus between the disability sector and the team in charge of the poverty reduction strategy as they both felt that collecting data in order to design appropriate programmes to fight discrimination made sense. Therefore, in 2001, the government did not have any objection to conducting a survey with a disability module.
How was the project carried out?
The first phase of the project was initiated by Handicap International in 2001 with UK Department for International Development (DFID). The first phase was the identification of the way to produce data on disability which included the design of a disability module with the participation of DPOs and relevant line ministries. Then, the survey itself had a sample of 13,000 households selected randomly and was carried out by INE within its regular budget. By the time HI withdrew from Honduras at the end of 2001, the analysis of the results had not yet been completed. However, in 2002, Mr. Gontier was contracted by INE as a consultant to conduct the analysis of the survey results.
What are the main findings from the survey?
The answer to this question depends mainly on the end user of the information: for example, the Ministry of Health, it was enlightening for them to discover that 3 of 4 parents of a child with a congenital disability under 2 years of age have not yet detected the disability and cannot take appropriate measure when its time to reverse or limit the impairment. As a result of this finding, the development of an early detection program was a priority for the Ministry of Health.
For the Ministry of Education, they could not reach their international commitments of universal access to primary education without addressing the problem that the majority of children with disabilities were not completing primary school. In addition, the survey showed that the few children with disabilities enrolling in school having access to education do not have the specific attention they need and have lower rates of progression from their classmates without disabilities.
For the Ministry of Labour, the fact that the public sector was more discriminatory towards hiring people with disabilities than the private sector was important information. In addition, the high rates of employment of people with disabilities in the informal sector were also revealing for this ministry.
Probably the most significant results showed the link between poverty and disability in Honduras was strong. For example, the probability to become disabled is 3 times higher in poor household than in rich ones. The survey also showed the marginalization people with disabilities face through the lack of access to mainstream services such as education and health and the survey confirmed the limited coverage of specialised services.
By comparing the results of the survey with the public budget it was easy to demonstrate that the existing public policies and social expenses were not reducing the discrimination between people with disabilities and the rest of the population. In fact, the data showed that more public money is spent on non-disabled persons than on people with disabilities.
What did stakeholders do with the information once it was completed?
DPOs have seen that having official data that shows clear direct or indirect discrimination between people with and without disabilities was a powerful tool to defend their rights. After having a presentation of the results of the survey, the Ministry of Education has begun to address the problem of access to education for children with disabilities. They have created a specific department to tackle the issue and have begun defining a policy. In the design of the policy, the ministry used detailed findings from the survey such as how household characteristics and demographics impact access to education. The survey also showed that attitudinal barriers in the family have a greater impact on access to education than the attitude of the teachers of physical accessibility of the premises. Finally, the data from the survey was also used to establish a baseline and provide an indicator for monitoring the policy.In addition, international agencies such as UNDP and UNICEF made great use of this information in their reports in the design of their country programmes. The development of these statistics is critical for guiding the development of disability policies and can serve as indicators for monitoring their implementation. However, it is vital that local DPOs are involved and aware of the development of such surveys so that they have a certain level of ownership on the data and are therefore, committed to using the results for lobbying.
Disability Monitor Initiative in South East Europe is managed by the Center for Society Orientation – COD (Centar za orijentaciju društva).
The mandate of COD is to support capacity building of local actors in the Republic of Serbia and other countries of Southeast Europe during transition period, in order to enable all marginalized groups, with a special focus on people with disabilities, enjoying their fundamental human rights and equal opportunities.