The WHO Atlas-ID

Download all of the «The WHO Atlas-ID» sessions.

Presenters

• The WHO Atlas-ID Project:
  Shekhar Saxena, Coordinator, Mental Health Evidence and Research Team, Department of Mental Health and Substance Abuse, World Health Organization

• Atlas-ID Methodology and Procedure:
  Jocelin Lecomte, Information and Research Counsellor, Gabrielle-Major, Lisette-Dupras and West Montreal Readaptation Centres for Persons with Intellectual Disabilities (Canada)

  Download «The WHO Atlas-ID» Presentation.

• Salient Findings:
  Céline Mercier, Director, Research and Education, Gabrielle-Major, Lisette-Dupras and West Montreal Readaptation Centres for Persons with Intellectual Disabilities, and Professor, University of Montreal (Canada)

  Download «The WHO Atlas-ID» Presentation.

Discussants

• The Atlas-ID and the Low-Income Countries:
  Mama Josephine Bakhita, Director, Amani Centre for Persons with Mental Disabilities (Tanzania)

• The Atlas-ID and the Middle-Income Countries:
  Moussa Charafeddine, President, Inclusion International, Middle East and North Africa (Lebanon)

  Download «The Middle-Income Countries» Speech.

Chairperson

• Itzhak Levav, Representative, World Health Organization (WHO) European Region (EURO)

Introduction

• Good afternoon, ladies and gentlemen. We are going to start the second Plenary Session. The first one was excellent, to my taste.

  Our subject is: Human rights as an over-arching issue on human intellectual disability.

  We are going to have a presentation of the Atlas that was prepared by the WHO Collaborating Centre. You have a copy, and I expect you not to go to sleep tonight before you read it carefully. You will find, following the references to food that were made this morning that it's sweet and sour. There are aspects which are very positive, and some others that are very worrisome, that demand change. But I'm not going to tell you what we are going to hear right now.

  The next speaker is going to be Dr. Shekhar Saxena, who is the coordinator of the Mental Health Evidence and Research Team, the Department of Mental Health and Substance Abuse, of the World Health Organization, who is on my left, from Geneva.

  In the conference book. you have the biography of Dr. Saxena and of the other speakers, . With your permission, Dr. Saxena, I would like to introduce you in a nonconventional fashion.

  Dr. Saxena is Mr. Atlas, or actually Dr. Atlas, He has produced several of these reports, which have taken us from the time of darkness with regard to the world situation, to a time where there is light, No longer we need to grope when we start thinking about which are the decisions that need to be made, We now have a baseline against which to compare accomplishments or regressions in our programmes or efforts.

The WHO Atlas-ID Project

• Dr. Shekhar Saxena

  Thank you very much, respected Chairperson. Good afternoon to all of you.

  This session is about the Atlas, particularly the Atlas on Global Resources for Persons with Intellectual Disability, which is right here and which is also in your files. You will have a formal launch of this Atlas this evening at 7:00 pm. My task this afternoon is a very short one. The task of my colleagues who come after me is much more complicated, to describe the methodology and the findings of this Atlas, which you will hear in due course, so let me begin with an introduction of the Project Atlas.

  This particular project is one of the projects of our department in WHO, the Department of Mental Health and Substance Abuse. The objectives of Project Atlas are to collect, compile and disseminate information on the resources and services in the areas of mental, neurological and substance use disorders from across the world. It's a global project. We collect information from as many countries as we can, and I'll show you how successful we are in doing that, and the usefulness of this project towards three objectives: advocacy, planning and monitoring. We believe that providing information that is as correct and as reliable as possible, on a global basis, is a first step towards change. And Project Atlas is designed to do that.

  This information can of course be used for advocacy purposes, and it's used to a very large extent. It's also used for planning. Once you have information, you can see what works well and what doesn't work well, and what needs to be done for that. And lastly, it's useful for monitoring. What are the effects of what you do? You can measure it by collecting information again and seeing if there is a change or not.

  We began in 2001 with the Mental Health Atlas, and these are the two publications that we published in 2002. Both were on mental health. One was a global aggregate report, and second was country profiles. We realized that these atlases were so popular, were being used so much, that we thought that there was a need for developing atlases in a variety of areas. We collected data from all 192 countries which were member states of WHO at that time and we put this information together. This was used so much that we had a revised edition in 2005. In your bags, there is information on the Mental Health Atlas 2005, and you're most welcome to get on the website and use this, or acquire a published copy. There were additional data in 2005 Atlas from academic institutions, published literature, unpublished reports, and personal communications, apart from the government sources, so it became much richer and it became much more accurate. Again, this was used in a variety of settings.

  We have a website. The best way to search for that website is to go onto any search engine that you use and type Mental Health Atlas, and that is the first website that comes up. And that website has all of the information that we have, so we don't hide anything from you, we give you as much as possible on the website. You can create your own maps, you can create your own graphs, you can download all the information. This is the kind of map that you can produce, which depicts the country's data in a graphical manner, so you can actually identify your country, and see where your country is among its neighbours across the globe, and compare what works better, and what doesn't work better.

  As I said, the whole Atlas is on the website, and you can search for it just by typing a few things in the search engine. If you are interested in the mental health field, I would strongly urge you to go onto the website and search. You will be surprised at all of the data that is available. But we went ahead and produced a few other Atlases. We had the Neurology Atlas, the Epilepsy Atlas, we had an Atlas on Child and Adult Mental Health Services, we had one on psychiatric education and training. Very recently, in 2007 we had an Atlas on Nurses and Mental Health, and this has again been a good contribution. But the last one in the series is the Atlas which is the topic of discussion today.

  We are very proud of this Atlas. This Atlas has been produced in collaboration with the Montreal folks, and they'll be speaking next, so they will introduce themselves. But this has been a wonderful exercise, to collect information from across the world on intellectual disability services, intellectual disability resources, and we have as many as 147 countries which participated in this exercise, so this is truly a global exercise. We covered 95% of the world population so we can claim to be global in this Atlas again.

  The Atlas launch here, which I don't see as the 7:00 event, but as the three day event, is partly about the Atlas. And what we are hoping to do is a systematic review of the contents. As our Chairperson reminded us, there'll be a multiple choice exam tomorrow morning, so we hope that you're able to at least read some parts of it and discuss it. There will be comments by stakeholders, starting from this session; there will be discussions on implications on the Way Forward.

  I noticed that there are many sessions in this conference which are talking about the implications of Atlas data for individual regions, for individual stakeholders, and this hopefully will be a good beginning for taking seriously the lack of resources in the area of intellectual disability all over the world. It's not only a matter of low income countries. It's a matter of a global trend towards ignoring and neglecting the people with intellectual disabilities, so assigning fewer resources to them.

  We do plan regular revisions of the data in all Atlases, including the Intellectual Disability Atlas, and we will have updates, we will correct inaccuracies, and we will expand the information base in the coming years, so it is just a first step that we are taking in collecting systematic information across the world.

  We do plan to use the Atlas for advocacy, for human rights awareness, for planning at local, regional and national level, and, as I said earlier, for monitoring change. The Atlas is just a beginning, so it is in your hands that it might find use. It's giving you information that you can use for all the purposes that are there, including advocacy. If you want to focus on the Way Forward, look at Table 59 of the Atlas, which is on page 74. This gives you the global needs in one page. It describes the issues, and it describes the steps that need to be taken. So I would like you to read the whole Atlas, but when you go to your Ministry, when you go to your policy people, take Table 59 and show them what can be done.

  I'll end my presentation with a reminder of two issues that we have become very familiar with.

  The first issue is to make people realize how badly people with intellectual disabilities are being treated. And I think that's a fundamental power of this information. That you can open the eyes of people who can act. You can put things in front of people and say to them “This is how you look when you compare yourself with other countries. This is how badly you are treating the people that you are supposed to treat well.”

  And the second issue is the power of collaboration. We realized, as we worked on the Atlas, that we work together collaboratively, and we were able to achieve the results that are in front of you in the Atlas. Now today, we're expanding that network to all of you. We're putting in your hands the information, and we hope that we will be able to work collaboratively, to make use of the information and to progress further. This morning at the session, we heard that the human rights ideas are very high. As we read the Atlas, I become very depressed. This is what we have in the world for these people, and the gap is very wide, between the morning session and the afternoon session. What we should have and what we do have. There's a big gap, and that's what we have to bridge. Hopefully, this will be a good beginning for that. Thank you,

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• Itzhak Levav

  Dr. Saxena, the floor will have about 20 minutes for questions or remarks, but if anyone wishes to ask one question to Dr. Saxena before we continue, I will deduct it from the end. Not really. All right.

  As Dr. Saxena has mentioned, this is information for change, and I think that we should put it to good use.

  Now, the next speaker is M. Jocelin Lecomte, from the Montreal Collaborating Centre. He has an impressive CV that I suggest you read. I would say Jocelin, that you belong to this rare profession called lawyer-jurist, that has joined us in greater numbers in recent years, and they have strengthened our field. We look forward to your presentation, in which you are going to talk about the methodology and procedure that you used in order to create this Atlas.

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Atlas-ID Methodology and Procedure:

• Jocelin Lecomte

  Thank you very much, Dr. Levav.

  First of all, I'm here today to talk to you about the methodology and limitations of this process. Before going forward, I just wanted to take a moment to clearly identify who was part of the Atlas-ID team. You have met Dr. Saxena, who was the Coordinator of the Mental Health Evidence and Research Team at WHO. There is myself, who was the Atlas-ID Coordinator, there is Céline Mercier, who you will hear later on, who is the Director of Research at our three Centres in Montreal, and there was Marco Garrido Cumbrera, who was a technical advisor at WHO. The reason why I'm taking the time to mention this is because the team really worked together as one, and I think it's nice for you to know who was behind this Atlas.

  Secondly, regarding the methodology and limitations, I just briefly wanted to go over the reasons behind the creation of an Atlas-ID. Beyond the obvious reasons which I know that you could state as well as I do, I think it's worth noting the importance of intellectual disabilities for the World Health Organization, and the need to compute some global data in the field of intellectual disability.

  There is also a second reason which is the increasing emergence of intellectual disability as a human rights issue. I think the session of this morning was quite eloquent on that. This is, especially in light of the UN Convention on the Rights of Persons with Disability, a very very real issue.

  And the third, which is, on a more personal note, the recent establishment of a link between WHO and the intellectual disability field via the Montreal WHO Collaborating Centre, and its affiliated Centres, the West Montreal and Lisette-Dupras Readaptation Centres, which allowed for, I think the first time, but correct me if I'm wrong, the establishment of such an Atlas from such an agency-based point of view. So, the Atlas was coordinated from Montreal, with close collaboration with Geneva, and with the support of all the Regional Advisors from all of the WHO regions.

  I think that we can start off by the obvious, which is that currently, it is very hard to find data about services on intellectual disabilities. It is hard to access quantitative data. The repartition of this data is very uneven. You either have forests of trees that have been passed through papers for programmes of information in certain countries, or you have a paucity of information in other countries.

  This project started off on the shoulders of an endeavour by IASSID, the International Association for Scientific Study of Intellectual Disabilities, which started putting together a questionnaire to send to countries to collect data on intellectual disabilities. So we basically built on that. We put together a team of experts from more than 17 countries, basically asking them “OK, what do we need to know? What areas should be covered regarding intellectual disability services in a global study?” This allowed the production of a questionnaire.

  We rapidly realized that there was also a need to produce a glossary, because one of the major problems that we had in communicating related to concepts used and the need to be sure that we were all talking about the same thing. So, we tried to put together a glossary, which by the way does not reflect WHO's definition of these terms, but was rather more an operational glossary, very much linked to this project. The questionnaire, which you have at the end of the Atlas report, was divided into ten sections. The glossary is also there, I'll let you look at it. I will not go through it now, because I really want to talk about the heart and soul of this Atlas, which are the national respondents.

  The data were collected through these focal points, as we called them, and it would not have been possible to produce such an Atlas without the support of national respondents. I know that some of you are in the room today, and I really want to take this opportunity to thank you for your cooperation in this. I think that, without you, we wouldn't have this great report. The information that it contains is very rich and very thought-provoking.

  But how did we find these respondents? We basically put together an order of respondents. First we tried to contact the governments, or ministries to find somebody responsible for intellectual disabilities. Who is the person in charge? If we could not find such a person, then we'd look at public organizations that act as advisory bodies to governments in matters of intellectual disabilities. If that didn't work, then we'd look at national non-governmental organizations (NGOs) that deal with intellectual disabilities. And finally, if that didn't work, then we'd look at university research centres, and researchers that do studies in this field.

  So, once we had identified a national respondent, the procedure was that we sent the questionnaire, along with the glossary. The questionnaire was produced in four languages, English, French, Spanish and Russian. The respondents were invited to fill out the questionnaire, to the best of their knowledge, but also to involve other respondents, either ministries or NGOs or what have you, to complete the information. If discrepancies arose between the languages; the English version was the master version. And also, the Atlas-ID coordinator in Montreal was available to respond to any questions, and to provide any clarifications that were needed regarding either the glossary or the questionnaire..

  So, at the end, we had more than two thirds of the questionnaires that were completed or approved by a member of the government, or a ministry responsible for intellectual disabilities. Twenty four percent came from NGOs, and about 18% from universities and research institutes. You have all of these details in the Atlas report, but just to tell you that the majority of responses came from governments, and that was, I think, also one of the objectives, to ask the governments what they are doing regarding resources in intellectual disabilities.

  In some countries, we had teams of respondents. One country had more than 12 respondents on the same questionnaire, which gave a very rich questionnaire, but at the same time, was a bit complex. For some other countries, we received more than one questionnaire from different categories of respondents, and that created a problem. We addressed that, again, by going back to our focal point order, which I showed you earlier, so we would take the questionnaire from the highest of this order, and then fill out the missing data with the information coming from the other questionnaires.

  So, based on 147 completed questionnaires, we had a response rate of 74.6 percent of countries, representing 94.6 percent of the world population. So, this is what it looks like in your Atlas report. The colours are maybe a bit more vivid. So this is what looks like is, and I think that, as Dr. Saxena has mentioned, we can really say that this is a global view of the state of resources in intellectual disabilities.

  Now, of course, such a project has limitations, and I think it's worth noting them. Especially, since this global report on intellectual disabilities is the first of its kind, it is important to note that terminology was a huge problem, as I referred to earlier. In the absence of an international terminology, and in view of the diversity of contexts, we could not presume that the same term meant the same thing for different people. The glossary was produced to try to respond to that, but although it was very useful, it was not that satisfactory on all parts, because some questions still remained, and I received emails up until the end. Questions such as: “What do you mean by this?” “In our country, this expression does not mean the same thing”, “We don't have this type of services”, “We don't know what you're talking about” .And so on.

  Another limitation regarded the national limitation of services. Collecting and aggregating data on intellectual disability services that come from different ministries, which come from a federal government that is responding for the whole of its country, like Brazil or Canada, or the United States, was quite a challenge. In analyzing the data, we had to aggregate by regions, and by country income level, and of course that also has its limitations.

  There are also sources of bias regarding the questionnaire itself, regarding the yes or no format which tends to overestimate available services. We tried to alleviate that via questions where we used words like “generally” or “most of the time”, but the issue still remains. Another bias was the fact that there is an absence of factual data on resources on intellectual disabilities, so in certain circumstances, respondents had to rely on approximations, if not on their own experiences. Especially in the absence of factual information, it is likely to occur in countries that share common characteristics, and that could affect the findings.

  Another bias was the fact that, of course more respondents were associated with governments. I alluded to that a bit earlier, but one has to keep in mind that WHO is a coordinating authority on international health within the UN, and that it maintains close relations with governments. So you cannot produce such a report without allowing governments to have a look at the data that is going to be published about their country. In a way, this is also very useful, because then you can compare what the government is saying with what is it is doing. I think that that is your job, now that the Atlas is out.

  And also, a final limitation was regarding epidemiological information. We started off wanting to collect such information on intellectual disability, but there was a severe lack of reliability of the epidemiological data that was produced, to the point where, in the Atlas, we decided not to report the data. I'm referring to Question 2 of the questionnaire, which is at the end of the Atlas report.

  So, what's the overall outlook of the data gathering process? Well, the overall outlook is that this project aimed to map resources for persons with intellectual disabilities in all member states of the WHO, as well as associated members of the WHO, areas and territories, by compiling and calculating their distribution by regions and income levels. The primary target readers for the Atlas- ID, as was alluded to by Dr. Saxena, are planners for social health and policy, and services within countries. But the Atlas will also be useful for providers of services for intellectual disabilities, for international and national NGO's active in the area, in the field, for human rights advocates, activists, public health professionals, and civil society in general.

  Also, at the end of the day, the data gathering process allowed us to come to three conclusions. One, that we identified gaps in needs in intellectual disability resources, and services throughout the world. Dr. Mercier will be presenting that in a few moments. But also, we developed two instruments to be used at country or regional level, the glossary of terms used in intellectual disabilities, as well as the Atlas-ID questionnaire. Now, mind you, as I already mentioned, these two instruments were developed by leading intellectual disabilities experts from 17 countries, so this in itself is a contribution. Another contribution that you will find at the end of the report, and that I feel very strongly about, is that we produced a network by way of this project. We always say that there is such a lack of an international network across different specialities, fields, and areas of expertise. There is one now. This is a significant contribution to the establishment of a network in intellectual disability through the national respondents, through the people also that helped on this project, and also through the enormous resources that we found on the websites and through contacts in this field.

  So, basically, the data gathering process lasted 18 months and it resulted in this. We feel very very proud of the results. Thank you very much.

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• Itzhak Levav

  M. Lecomte, you have very good reasons to feel proud. This is a very difficult operation. You couldn't do it unless you have ingenuity, commitment to the field, and a hell of a lot of stubbornness. To obtain information on 145 countries, having done so in a smaller number of countries, I tell you, you really need to be committed to the field. We thank you very much for this effort.

  Any questions with regard to methods and procedures that you would like to make? One question, please identify yourself and speak close to the mike.

• Question

  I am from Poland. My question concerns the problem of discrepancies between national and nongovernmental organization data. Did you give the priority, as I understood, to governmental data?

• Jocelin Lecomte

  Yes, you are correct. We did give a priority to government data. As I mentioned, if we obtained either a one or a two category of national respondent, we would give them priority. But if there were missing data in the questionnaires, and there were multiple respondents, then we would use the questionnaires from the others.

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• Question (cont'd)

  OK, then when you have double information, governmental data and nongovernmental, and you have found a big discrepancy, what have you done in this moment?

• Jocelin Lecomte

  That's a very good question. According to the order of the focal points that we had established, we would go with the governmental data. And if there were no governmental data and we would have only NGO data, we still sent this information to governments prior to publication to allow them to react to this. This is part of the Atlas process.

• Itzhak Levav

  A very sensitive question. Dr. Saxena wants to add something to it.

• Shekhar Saxena

  Just to add that in several cases we went back to the government, to give them the NGO data, and give them an opportunity to give us revised data, and some countries did take that and revised it, but not all. There are advantages and disadvantages of working with the government. The disadvantage is that sometimes the data is inaccurate, or I could even say, incorrect.

  Some governments would like to present a rosier picture than what it is, and some governments would actually like to give a negative picture in order to obtain more help from outside. So, it's not a one-direction bias, if I can say that. The advantage is that we rely on the governments to make some changes, and unless they own the data, unless they think that the data is correct, there is no way you can make changes. So, I think it's a process of working together and seeing how accurate the data is, but also how useful the data can be. Obviously, the Atlas is a compromise on that, but since it's a first attempt, we feel that it's a good compromise.

• Itzhak Levav

  Since I don't belong to this team, I'm just coordinating it, I will tell you the rule of thumb that I use for this governmental data. If this is the best picture, then that is right. That is right. If you find that some items are very worrisome, then truly, they are very worrisome. I agree with you in this question. But I think that the last point of Dr. Saxena makes sense. If you wish the government to take action, you cannot come to them with other information. There is enough here to demand change.

  We'll continue further, because we are most anxious to know about the findings. By the way, it is well structured this Atlas. At the end, you will have a summary of the salient findings. And I should also mention that this glossary that M. Lecomte has described is really excellent for all of us in the field, because it brings clarity to a number of concepts that are at times very loose. So their contribution, in this respect, is even higher.

  Dr. Mercier is one of the stars of this programme. Dr. Mercier is a Professor of Psychology at the two leading universities in Montreal. The first one is the Université de Montréal, did I say it right? And McGill University, which is the English speaking university. She holds these two chairs, and she has been highly involved in the development and production of the Atlas, so nobody is better than her to give us the salient findings. You have about 30 minutes to walk us through .

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Salient Findings

• Céline Mercier

  What is really striking is that this very first question shows how research always has a political dimension. That was really a concern when we were working on this project.

  At the end of the Atlas-ID, you will find the salient findings. As, it has already been said there are many ways to analyze and to use this data. So my purpose today is to offer you a guided tour of those findings. The objective of this presentation is to demonstrate how the data can be used to document, demonstrate or compare situations, to analyze, to monitor, to promote, to advocate, to make decisions about priorities. That's the orientation of this presentation.

  Lack of Visibility and Accountability

  The first series of conclusions which will be put in relation are the following: the paucity of documentation and data; the concurrent use of terminology and systems of classification, and the last one, the lack of visibility. Everyone will agree that, these are really well known facts. However, the Atlas has allowed us to document those three facts.

  The first conclusion is about the paucity of documentation. Only 37.9 % of the participating countries said that they have a reporting system about the prevalence, incidence, or provision of services, or the use of services. The interesting thing about having a series of Atlases, is that you can make comparisons. In that case, we can refer back to the Atlas on Mental Health of 2005. You will find that in 2005, regarding mental health, 75 % of the countries had some type of monitoring or epidemiological data on mental health, compared to today’s data of 37.9 %. So, you can really document the situation with this type of data and say that there are two times fewer countries in the world that have any systematic information on intellectual disabilities compared to mental health.

  The next conclusion is the concurrent use of terminology. It's quite clear that “mental retardation” is really the term that is most used in most countries of the world, followed by “intellectual disabilities”. You can also see that, according to the WHO region, there are different percentages of use of the different terms. Here, I really have to say that the question was about the terms (plural) that were most often used in your country, so there was a possibility of multiple responses. So, with that, you really have a clear figure of what the trends are, and what is the relative position of use. I know that professional opinion is not a classification per se, but we can see that it is quite important in some countries.

  We can see the same thing with the systems of classification. It is here that we have “professional opinion”. There you see that ICD10 is really the one that is most popular and that it is used across all WHO regions. And then the DSM4 is really used. What can be a bit surprising is that ICF is not used as much. We have to be cautious when we are talking about that type of data. It could be that we have a bias, since we are collecting data through a health and mental health network. But, as it is now, it's quite clear that intellectual disabilities are more on the side of DSM4 than on the side of ICF.

  The last conclusion pertains to lack of visibility. If I want to make a case for the lack of visibility, I can really at this point document the paucity of documentation and data, and also try to look through the Atlas at related findings that can be put in relation with that. One of the findings is the fact that intellectual disabilities is really a field embedded within mental health and disabilities, as we have seen through the use of terminology and classification systems. But also when we ask people to identify the department that is in charge for policies and programmes and for legislation regarding intellectual disabilities, on all issues, eleven different departments have been mentioned. And just asking the department that is responsible for policies, six departments were identified.

  Actually, the graph presented in the Atlas-ID report shows that the field of intellectual disabilities is shared between many constituencies. That can be a positive thing if there is a good integration, but it can also have some negative effects, such as the difficulty to identify who is responsible and accountable. Really accountability is the key question concerning intellectual disabilities.

  Inequities

  Now I will go through a second set of findings, and with this I want to demonstrate inequities… and I think that this is not very difficult. If we look at WHO regions or if you consider low and middle and high income countries, there are many facts that can demonstrate such inequities, but I will use just three of them.

  The first one is about the sources of funding for services. The first thing you can see in the Tables [see PowerPoint] is that there really is a gap when we look at tax-based funding. A gap between low-income countries and high-income countries. This is really a discrepancy between one category of countries and the other one: much more high-income countries rely on tax-based funding than low-income ones. If you look at out of pocket money, we see that it is really an important source of funding in most categories of income. However, if we consider the median revenue or the median PIB of those different levels of countries, we see that it is absolutely not an indicator of equality. The importance of out of pocket monies really has quite a different impact according to the income category of countries. Having to pay for services is much more a constraint in high-income countries than in low-income ones.

  Then you can see a trend in the proportion of countries which refer to social health insurance, from low income to high income countries, with a greater proportion of funding from social health insurance from low to high income countries. It is also quite important to see that NGO's are important in all categories of countries, but that external grants are really a critical source of funding for low income countries. Sources of funding is then one type of inequity. This is the first level of inequity that can be demonstrated through the data.

  The second one is access to government benefits. Jocelin Lecomte was talking earlier about the yes/no format and the bias that this can provoke. Most of the countries said that there are some types of government benefits for people with intellectual disabilities. But, when we asked which proportions of people that were entitled to those benefits really get those benefits, the figures were quite different. Just look at those two figures. We see that in 75% of low income countries, less than 10% of people get the benefits they are entitled to. At the other end of this spectrum, you see that in high income countries, more than 75% of people receive the benefits they are entitled to. So, this is really another type of inequity that is more related to the persons themselves.

  The third type of inequity concerns accessibility. We found that the most important barriers regarding access to services are socioeconomic factors, geographical factors, and location (urban vs. rural). If we look a little closer, we can see that socioeconomic access is really much more affected by the level of income of the countries, with a greater impact in low-income countries. We can observe the same trend regarding geographical factors as well as urban and rural location, but the gap between low and high income countries is not so striking.

  Asylum-type Institutions

  From the data on provision of services, we learned that in 56 countries, there still are asylum-type institutions for adults and, in almost the same proportions, for children. This is really quite hard data, because you either have this type of institution or you have not. Such data can really be used to set priorities, to benchmark and identify targets as “close down this number of asylum-type institutions in the next five years”. And then to monitor the progress that are done. Also, we found that asylum-type institutions are not present in the same proportion in every part of the world. We can see that the African region has fewer institutions, and that may be related to the fact that they have fewer health services. Also we see that in the European region, Eastern Mediterranean region, and South-East Asia region, we still have significant proportions of asylum-type institutions, as well as in the Americas. So, there are significant proportions of custodial care institutions and facilities that still exist today.

  Prevention and Primary Care

  The next set of data pertains to questions on preventive efforts, provision of services by primary health-care workers, and in-service training of primary health-care workers. The idea here is to promote a public health approach, compared to a specialized approach in the field of intellectual disabilities. If this is a policy that a government wants to implement, it can access some indicators to monitor development of such a public health approach. As a researcher, I am interested in the provision of services by primary health care workers because the Atlas-ID report indicates, in the sections on access to health services, that more than 75% of the participating countries say that people with intellectual disabilities have access to such services. So my conclusion is that the easiest access is really to primary health care. And also I have my WHO bias, that is very much involved in primary care services.

  On one side, there was a question indicating that primary health care services are the most accessible services for persons with ID. On the other side, when looking at the professionals that are involved with the provision of services in the field of intellectual disabilities, primary health care workers came almost last, just before the art therapists. So this is really a big discrepancy. These primary health care services are the most accessible, and yet the primary health care workers are not seen as working in the field of intellectual disabilities.

  In this next table [see PowerPoint], we can see that when we are talking about in-service training, the primary health-care workers came again in almost the last position, sharing the last ranks with the physicians and the paediatrics. This is quite concerning, because most of the GPs work in primary care services and that the paediatricians should play a critical role in screening and referral for early intervention. With this data, we really demonstrate that there is something wrong somewhere and that we should focus on that.

  If we come back to the issue of preventive efforts, you can see that most countries are really involved in preventive strategies. The issue here could be how can these strategies be used in more effective ways, in terms of implementing strategies that respond to the five criteria that Dr. Chandra talked about this morning: strategies that can be easily implemented, that are effective, and that have an impact.

  Role on NGOs and International Organisations

  The last set of findings is about the role of NGOs and international organizations. First, when you compare the proportion of countries where NGOs are active in the mental health and intellectual disabilities fields, you see that the NGOs are involved in as many countries in mental health as in intellectual disabilities. Regarding the international organizations, I didn't find data in the Mental Health Atlas about their importance.

  The specific data for ID suggests that the international organizations and the NGOs are not active in the same fields. If you look at the NGOs, we see that education, support and health to the persons, and rehabilitation, are the ones that are implemented in the greater number of countries. With the international organizations, the more frequent fields of activities are related to advocacy, policy and system development, and then education. So it could be that there is some sort of repartition of fields or a different type of involvement, depending on whether you are an international organization or you are an NGO.

  What is also interesting is that if you look at the housing sector, there are fewer countries where there is some impact from the NGO's and the international organizations. If we go a bit further, we can see that among the NGO's the field of activities will not be the same, depending on whether the NGO is active in low income countries or in high income countries. For instance, in low-income countries, you have education, support, self help, advocacy and family as the main fields of activities, while in the high-income countries you have advocacy, support, self help, and policy and system development.

  We also see that amongst the less numerous fields of activities, you still find housing, work, policy and system development, and prevention in low-income countries. They are slightly different in high income countries, with housing, health, and prevention as fields of activities. But if you consider that social health insurance and access to public funding was much more important in high-income countries, it could be that those sectors are already covered by government policies. That is not the case in low-income countries. So it could be an explanation, and we should further analyze the conditions that can affect the activities of NGOs.

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• Itzhak Levav

  Very good. Exactly on time. It was good, walking through the book, and there is a lot to react to. I would first like to get the reaction of the two speakers and then we take the reactions of everybody. OK? Two people are going to react, unfortunately the third speaker has not yet arrived. He's an expert in the field, and we would have liked to hear from him. Perhaps he's going to arrive later on.

  The first reaction is from Mrs. Josephine Mama Bakhita, from Tanzania. And I recommend that you read her biography, as I said with the others. But this is written in a personal narrative way in which we see how two axes converge. Her personal commitment, because her late son and only child was affected by intellectual disability, as I understand, and the other is her professional track. She's a social worker, and you will see how beautifully the two of them come together in her narration. So, we would like to hear from you. You have 10 minutes.

The Atlas-ID and the Low-Income Countries

• Mama Josephine Bakhita

  Honourable Bangkok Co-Chairman, Scientific Council, distinguished guests, ladies and gentlemen. My name is Mama Josephine Bakhita from the Amani Centre for Mentally Disabled Children/Youth in the United Republic of Tanzania. I feel duty bound to thank the Scientific Council for facilitating and thus enabling us to participate at this Bangkok Conference and in doing so may you remain assured that I am also voicing the sentiments of the entire community of workers and parents inside and outside Amani Centre.

  I feel emotionally overcome whenever I think about the very opportunity of my being here, because, initially, I did not, as an NGO, possess the required qualifications due to a lack of travel and participation costs for this conference. But we put up a request for consideration of financial assistance and the Scientific Council was not long in letting us have a positive response. We are very grateful to be with everybody else here, as we believe that out of the Bangkok deliberations about disabilities Amani Centre will pick a pain-killer, a map and compass to enable us play the role of an agent of change in the challenging task of rehabilitating the intellectually disabled. As if that was not enough, the Scientific Council granted me the opportunity to be a resource person for the topic named here above. For all this we, at Amani Centre, cannot thank the Scientific Council well enough.

  Distinguished guests, ladies and gentlemen. As you can notice from the world map, Tanzania is geographically an East African country. Its vast expanse of land rubs shoulders with Kenya, Uganda, Rwanda, Burundi, Zambia, Malawi, Msumbiji and the shores of the Indian Ocean. Tanzania’s total land mass is 942,400km2, which includes an inland water area including large and small lakes, of 58,100km2. The economy is, by UN standards graded as one among the least developed in the world. This is a factor which has adverse impact on disabled persons and their respective families, as it will be realised later on in my presentation.

  Vital demographic statistics include total population which, according to the national human census, 2002, registered at 34 million. The 2002 census in Tanzania has had one rare value in that all the disabled were also identified and enumerated countrywide. As per the 2002 census it is reliably revealed that Tanzania has some 650,000 disabled persons of multiple descriptions. Income per capita is generally low to such an extent that more than half of the total population survives under the one dollar-a–day expenditure bracket. The mainstay of the economy is un-mechanised agriculture. The per capita GNP, year 2000, stood at $270.

  Now about playing roles. An effective playing of roles to rehabilitate the disabled in low income countries, by NGOs, calls for the provision or availability of a number of facilities from the public as well as the private sector and the communities which host the disabled. The Tanzania government has both law and public policy aimed at enhancing efforts towards rehabilitation work. But when it comes to actual implementation of projects by individual NGOs, government annual budgets do not reflect the necessary goodwill and thrust avowed under the prevailing law and policy.

  As such, the burden of effective performance in rehabilitation work falls back squarely on individual NGOs as role players. This is of course, unfortunate. Amani Centre, for instance, is non–profit making by virtue of its constitution. We have no such lucrative assets as would enable us to generate and reap fund raising for a sustainable development effort in rehabilitation.

  The result is the tendency for NGOs to raise a gaze for possibilities of external financing through donors and partnerships, a matter, which places NGOs as role players in much vulnerability under donor and other forms of fatigue. Amani centre has operated without recurrent budget donor assistance for nearly two years now! One donor reaches a stage of drastic change in policy such as to disallow them continuing support to us. Continued efforts to search for an option lands us in the hands of a donor whose criteria do not fit in with many objectives pursued by our programmes. Under the circumstances, project postponements, delays and, even abandonment become our final lot and also that of the poor disabled. But the Amani Centre, as a key role player, has not succumbed to nagging. While efforts for partnership and donors continue, we have resorted to income generating activities and fund-raising methods even though they can only reap a mere trickling effect.

  Community Based Rehabilitation (CBR) is our modus operandi. For role players in low-income countries CBR proves to be a strong shock absorber operation-wise. Under this system, service delivery reaches the disabled at village level, in the hands of community and social workers. Amani Centre’s area of operation consists of a region/diocese estimated, according to census 2002, to have 29, 000 disabled persons. The area of operation also has in it large, medium and small urban areas. The villages are scattered and outlying. This poses a big problem in transport costs, taking into consideration our meagre financial and human /personnel resources. But we leave no stone unturned within the local environment by attracting the professional attention for partnership support from medical institutions within Tanzania.

  At Amani Centre we operate periodic mobile clinics in villages in partnership with an international organisation known as the Comprehensive Community Based Rehabilitation in Tanzania (CCBRT), which is a large professional hospital in Dar es Salaam, Tanzania’s capital city. During the clinical visits, a large number of cases are attended to and serious cases are given referrals. Parallel to this, opportunity is taken to counsel mothers and carers with disabled children on such matters as hygiene, nutrition and the broader field of public health, which includes physiotherapy intervention. The process of service delivery is continuous through home visits. And it works, though tough and rough due to lack of sufficient financial liquidity.

  As role players we are very much up against traditional customs and rules, under which a mentally disabled child is seen as a bad omen and a curse. These attitudes cause problems of stigma, avoidance and confinement of disabled children and youth in hideouts as well as social exclusion. At Amani Centre we are eliminating this odd trend of public thinking and opinion by launching aggressive adult education campaigns through television, the press and massive open-air congregations in urban and rural areas. Also, the home visits and the mobile clinics have created a positive impact in that more and more disabled children and youth are being released from hide-outs to be medically attended to.

  For the last fifteen years we have been in existence we have witnessed an increasing public awareness as well as good-will towards mentally disabled children and youth. As of now we have identified 3,667 who are registered for care under us, out of an estimated total population of 29, 000 disabled children, and youth. By way of statistical inference, this achievement is not yet much of a success story. Given ample national and international facilities, we should be doing better.

  When, by God’s grace, the fetters of disability have been done away with and sound rehabilitation among the disabled is achieved, a question which role players must always address themselves to is, what next? Does the mentally and socially reborn individual have to roam the streets and villages to his or her own detriment? Few things need make role players unhappy than to meet well-rehabilitated persons dwelling in utter desolation as if the entire rehabilitation effort has ended in a refuse dump. Rehabilitation must have a human right and purpose, the right to earn a living.

  In some countries government policies stipulate about “sheltered employment”, wherein certain occupations are, by law, reserved for the disabled. This helps avoid discrimination against disabled persons in areas of employment. Here vocational training comes into sharp focus as part of rehabilitation. As role players at Amani Centre, we have facilities for vocational training to the disabled. These include tailoring, cookery emphasizing nutrition, carpentry and agro-vet activities, such as small-scale animal keeping and vegetable gardening.

  In many cases many of the vocations are under-equipped in the sense of hi-tech standards, but they are better than nothing. In the area of formal education we pay attention to special needs. Role players must keep thinking about a future for the disabled and use the lobby system to exert influence on public authorities. The spiritual aspect must also be given a place in rehabilitation work.

  We are an NGO under the parenthood of the Catholic Diocese of Morogoro and we have not had difficulties in giving exposure to spiritual devotions to disabled persons of all denominations. We have always found religious institutions very willing to co-operate in this aspect of rehabilitation. This is a value-added task, which makes all the difference between “fattening a lamb” and human up-bringing.

  Another future-oriented aspect, which contributes to sound rehabilitation, is exposure of the disabled to recreation. For too long now the disabled in low income countries have been screened against recreation as if their fate was limited to movement between their homesteads and health centres. By their very being, the disabled may not be able to physically participate in sports and games, especially outdoor ones, but by casting a smile at athletes in playing fields, a matter which affords them mental relaxation. At Amani Centre the disabled have participated in Special Olympics at our Northwestern town of Mwanza last year. And this year at Mbeya, in the Tanzania’s Southern Highlands. On both occasions they scored several medals. In day–to-life they participate in singing, traditional dances and church choirs.

  I have been speaking to you from my own personal experiences as the director of a small NGO based within a country of extreme low income. I am therefore unashamedly biased as to my feelings of the importance of such organisations as ourselves. As both director and a parent of a child with learning disabilities, I am under no illusion that without our existence, the majority of our clients and families would have no support on either social, practical or emotional levels. As mentioned previously, it is not for lack of governmental, legal, and public policy, but a dearth of budget to fulfil these good intentions and sadly the low prioritization of our client group. We are therefore fulfilling an enormous, sometimes overwhelming role, often far beyond our capacity.

  You have already heard of the various projects and activities that we at Amani co-ordinate to both increase awareness of mental disability and to encourage Community Based Rehabilitation; but this is obviously at a regional level only. There is clearly a great need for awareness to be raised nationwide. The grassroots level at which we are working is often a crucial bonus for NGOs like ourselves; we are able to identify areas of true need, get ‘under the skin’ of the community we serve and target our services accordingly. While building experience and trust along the way, we are then able to use this insight to lobby public authorities at both regional and national levels, to varying degrees of success.

  In summary, we believe that that the service offered by Amani Centre as an NGO is invaluable, but under funded and therefore unable to maximise its potential. Our work has identified a major need for service change at a national level, but given our size, inexperience and lack of influence we need guidance and assistance to achieve our ultimate goal of greater support and understanding for persons with learning disabilities in our country. Working as small isolated agencies, we have little lasting effect – it is only by communicating with larger more experienced NGOs and community leaders both nationally and internationally that we may instigate this desired change.

  Finally, reliable studies and experiences have established that in low income countries poverty and disability co-exist and that the one evil aggravates the other. Under nourishment, for example, aggravates disability more seriously than the other way round. But given scarce resources which of the two needs should be uprooted first? Poverty eradication is a millennium goal, but as role players we must bank heavily on the combined efforts of parents and service deliverers. May I end with this food for thought.

  Chairperson, distinguished guests, ladies and gentlemen, thank you for lending me your ears

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• Itzhak Levav

  Very good. This is such as beautiful illustration of what was mentioned in the morning, and what Dr.

  Mercier showed us, that wherever there are fewer resources, and people need the most, the governments are less present, and the community takes things in their hands. But of course, without support, it's a burden and it might collapse. So, it illustrates both what has been discussed in the morning and today, so ,I congratulate you on the work you do.

  And the last of the reactions from the podium is by Dr. Moussa Charafeddine, who is remarkable. He's a medical doctor, with a tremendous curriculum. Trained in one of the leading centres on developmental disabilities, at John Hopkins. I suppose that this is where you got your training. But apparently he has been unhappy, just performing in the professional field, and he has crossed over to the NGO field, and he is the President of the Middle East/North Africa region of Inclusion International, and I suppose he will explain to us what it is, and the Friends of the Disabled Association.

  Again, here I invite you to read his biography because he's very interesting, particularly because of his two fields that he has covered, the professional and NGO. Dr. Charafeddine, if we give you 15 minutes, would you manage?

The Atlas-ID and the Middle-Income Countries

• Moussa Charafeddine

  OK. Thank you. Ladies and gentlemen, I was asked to prepare comments from middle-income countries on the Atlas Global Resources for Persons with Intellectual Disabilities 2007. First of all, I would like to thank the organizers, and those who have worked at bringing together this conference and event , it is a great success.

  It's a pleasure to represent the opinion of middle-income countries regarding this Atlas. I am very glad to attend this international gathering and to meet prominent leaders of the disability movement around the world. Besides people with disability themselves, who were absolutely absent from this Atlas. Nobody asked them “What is your opinion? What do you want? How are you feeling?” The organizers of this Atlas went to the governments, they went to the NGOs, they never went to the persons with disabilities themselves. The most important motion in the Convention was “Nothing about us without us”. We are doing an Atlas on people with intellectual disability without asking them what they want, what are their opinions, on the quality of life they have? It is very strange, astonishing, that they are here. They are listening, what the studies and research say about them.

  About three years ago, we at Inclusion International conducted a global survey about poverty and disability. The focus groups in our mapping were people with disability and their families. I will not give more hard criticism, like this one, but this one is very important, I would think.

  It's evident that the cooperation between WHO and a well-known research institution is bound to be very efficient. It produced such a comprehensive database and orientation guidebook, this is this Atlas, to be used by policy makers, by researchers, by public sector organizations, people with disability, parent groups, and persons with intellectual disabilities themselves around the world. I hope that it will fulfil it’s contribution to intellectual disability across the objectives. That is, identifying the gaps and needs, offering a tool, mapping questionnaire, and paving the way for networking for the countries' respondents.

  I still remember the efforts of the International community during the last three and half decades. The United Nations initiated the International Year for Disabled People, and the first time in history there was a mapping, just like this Atlas. But that Atlas was about disability at large, and after that, the United Nations brought world attention to the World Program of Action, which lasted for 10 years, during the International Decade of the Disabled. There was a repetition, a revision where United Nations Standard Rules were issued, and we have among us her Excellency Hissa Al Thani who is following up the implementation of the Standard Rules. And by the way, last May Hissa Al Thani had issued a mapping similar to this one but about disability at large, about the compiling of the international community with the United Nations Standard Rules about equality and equal opportunity.

  After 1993, and after issuing the United Nations Standard Rules, the International Committee started to arrange a time database in decades , for people with disabilities all over the world. This was done in the Americas, and the Middle-East, and North Africa, and in this region, the Asia-Pacific region, where they had it from 1993 to 2002, and they extended it this year from 2003 to 2012. And we also have this for the Arab region, from 2004 to 2015 .All these regions have their regional programme of action, and each country has a national programme of action. And I would suggest that this Atlas could be available for each region, and each region could target the time gap between now and the end of their decade to make use of the Atlas.

  There are other international initiatives which were adopted by the UN, such as in 1978 in Alma Ata, and the Convention about the Rights of Employment for People with Disability. Last but not least, the United Nations Convention, which was adopted by the United Nations and launched on December 13, 2006, and which was ratified by more than 120 countries.

  I was lucky enough to have a role in the revision of the Ten Questions "TQ" screening tool. I don't know if everybody knows what the Ten Questions "TQ" screening tool is? The Ten Questions "TQ" screening tool Questionnaire, which was issued by the WHO, focused on the screening of intellectual disabilities, in the developing world, in the Third World. And this questionnaire was revised by Inclusion International in 1998, where we offered to the WHO a kind of overview to develop this screening tool. And this questionnaire is much more advanced than that which you have put in the Atlas.

  The other event I had the honour to attend was a round-table at the WHO headquarters with an international session for scientific studies about intellectual disability. Dr. Parmenter is here, and we reviewed issues, at that time. But it was also a little bit confusing, because, as is the case here, most of the responses come from representatives who want to be rosy, or who wanted to show that they are very good, especially in the developing countries, those who do have the worst conditions. Not in the developed countries,

  You said that you are a UN agency, and you have to get the answers of the governments. The governments will never tell you that they are doing good, or that they are doing bad. It is a good point that they may give you a dark view to show that they need some help, but we all know that most of the European countries like democracies. They like a lot of human rights tools. They will never give you a dark or bad view, otherwise they will not be very well appreciated by the European community and they will be labelled by several bad labels. Of course, sometimes they do bad things, bad data, to get money. But not all of them want money from United Nations, they can get money from other sources.

  Now we are in front of a specific contribution from WHO and its Canadian partner, with appreciation for the Canadian partner, and for the extremely hard effort which was done by the personnel here. All we know, the roles of the WHO and CBR, Community Based Rehabilitation, along with UNESCO and International Labour Organization (ILO), it has successes in some areas, and it was not so productive in other areas. CBR is very good and very productive, but unfortunately it was being done to be sold to developing countries so that the burden of disability will be upon the people, the society itself. In the developing countries, they are lying under a very heavy burden, and now voila, here we have found you a solution. CBR. But CBR, my friends, it will give all the roles to the NGOs.

  What is the role of the governments of the developing countries? They have to handle everything themselves, and they are leaving the most serious burden about disability on the people themselves, on the parents. In the Atlas, you said that you find out-of-pocket services as important in the analysis of the incomes. You see how much it appears in the developing countries? It is just like the developed countries. Can you imagine the income of the poorest of the poor, the people with disability, in the developing countries? And they are paying out-of-pocket money, just like the developed countries. Can you imagine that? Can you imagine that the governments show that they are doing very well, and despite that, people with disabilities and their relatives are paying the expenses of disability from their pocket money, as it was shown here.

  It is the first time WHO has given comprehensive consideration regarding disability issues. By comprehensive, I mean from a multi-focal approach. It is evident that the main key disability issues is being viewed from different perspectives, starting from terminology, policies, legislation, protection, public awareness, financial governmental benefits services for children, and other access service factors, prevention, standard or provided services, training, the role of NGO, world international community, and other issues. Mind you, all of these were discussed and viewed from a health perspective, or from health vision. Health value or health quality.

  In the Atlas, I didn't see anything about an inclusive approach to the problem of people with intellectual disability. I mean, to go to the professionals, all of the professionals are very good, but there was no way to compare educators who are going in public schools, who are not in special schools. We do not need special educators for people because we are going towards inclusion now. These resource persons, the paramedical persons, are very important, but the most important for us, in the movement for an inclusive approach to intellectual disability, we want all the professionals to be inclusive in their minds, the doctors, the engineers, the bankers, the farmers, the drivers, the taxi, and the police. They are stakeholders, just like these paramedical stakeholders, because this was traditional, to have the old-fashioned personnel approach the problem of people with intellectual disability.

  The new approach after the UN Convention, after “nothing about us without us”, is to make everybody in the society a stakeholder. To make everybody share the responsibility to deal with the stigma of this. As Miss Al Thani said, we need a new culture, a new education, we need a new kind of thinking, a new kind of approach, where human rights is very nice and very rosy, to say these very nice things just like you are reading poems. But on the ground, this will not be translated unless you approach the people with intellectual disability. People with physical and motor disability need ramps to cross the streets, people with intellectual disabilities do need ramps in the sectors of the mind and the heart. Then everything will be OK, and they will be included. We'll look to them in another review.

  This view is going to be available in the registration, and I also have some copies and it will be very nice to read it. I hope it will be very fruitful to the people who prepared this Atlas, with high appreciation for all the efforts which were done. Thank you.

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• Itzhak Levav

  Thank you. I think that it is an important point that has been raised, and we should give the opportunity to the authors to reply.

• Céline Mercier

  Thank you.

• Question

  My question has to do with primary care provision for adults with intellectual disabilities. And it also has something to do with inclusion, so I’ll explain. I would like to provide primary care for adults with intellectual disabilities. That’s what I would like my patient panel to be. And the way things are in the United States, in the field of paediatrics, delivering care to children, you can be a general paediatrician, or you can be a developmental paediatrician, and you can have a panel of children you see for primary care who have intellectual disabilities.

  Now, in regards to medicine for adults, you can be a primary care provider for adults, but there’s no way to specialize in being a physician for adults with intellectual disabilities. There’s no fellowship in that, which is really what would be needed to specialize. So I’m in the process of helping a doctor at Boston University, Joanne Wilkinson, to develop a fellowship to help to train doctors to provide primary care for adults with intellectual disabilities.

  Now, here’s the dilemma. Should we focus the fellowship on developing doctors who can be consult liaisons for general practitioners, and help general practitioners to be able to serve adults with intellectual disabilities, or should we focus on training doctors who are, what I would like to become, which are primary care physicians for adults with intellectual disabilities? Those two things are different. The Department of Mental Retardation has some thoughts on this, and they, in the spirit of inclusion, would prefer that we train people to be consult liaisons.

  In the recommendations in the Atlas, it also mentions consultation liaison. One issue that I have with that is that doctors who go into primary care for adults often do so because they don’t want to have to deal with parents. And so that’s one reason why a person who wanted to go into primary care for adults with intellectual disabilities would be very different from another general practitioner. And also there are different screening guidelines, but perhaps those could be taught by a consult liaison. So I’m up in the air. I would like to know each person’s thoughts. Should we focus on consult liaisons, or should we focus on actual primary care physicians who specialize in intellectual disabilities?

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• Itzhak Levav

  The question is well taken, and I think that you will also have an opportunity to discuss this in the workshops, perhaps. Then you will obtain more opinions. You said “I want to hear from everybody”, and there are about 150 people on the floor. I doubt that it will reach even dinner. But the question is well taken.

  I think that it’s time to react, and I will give the methodologies of the team first. OK, Céline will answer.

• Céline Mercier

  I think that you can answer that type of question only by general principle. I will say that such a question has to be re-framed in the context of the general health system the country has. That’s the first principle. The second one is just trying to look at some evidence-based data. In this context, if we refer to the consultation liaison, that there is some evidence in the field of mental health in a context where resources are scarce, the model of consultation liaison is really more efficient, because it makes service available to more people.

  But actually, I think that there is a workshop about health, and another workshop about policies and service organizations, so perhaps one of these sessions could address your issue more specifically.

• Itzhak Levav

  Of course, the chair also has a reply, but I’m inhibited to give it now. With regard to the methodologies, who would like to answer the question of Dr. Charafeddine? Because it’s an important item that was raised.

• Shekhar Saxena

  I would like to thank Mr. Charafeddine for the appreciative comments, as well as the criticism. I would also like to point out what the Atlas is not. I think we perhaps didn’t explain it very well.

  The Atlas is not a needs analysis, it is not a satisfaction analysis. It is just an aggregate of resources and services available. I must point out that at WHO we take the task of consulting the users, consumers and families very seriously, and we do that very often for many projects. But in this project, we are talking about what services and resources are available, rather than what the satisfaction levels of the users are. This is a different task, and perhaps we will come to that also.

  In the end, by doing the Atlas, are we helping the people with intellectual disabilities or not? Our belief is that we are, and if we are proved wrong, we will accept defeat. I hope that this is not the case. Thank you, sir.

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• Itzhak Levav

  You obtained an answer, doctor?

• Moussa Charafeddine

  You want to open the dialogue? OK. It’s for the benefit of these people, so we have to take their opinion. That’s all. It’s nothing about us. This is a United Nations Convention, and this conference is coming about six months after that. That’s all.

• Itzhak Levav

  I think that you had made your point, and I think that Dr. Saxena, in my opinion, answered from his perspective. It’s what society has given to people with intellectual disabilities, either in the mental health field or in the neurological field or in the training field. It is not being asked, through this instrument, whether people are satisfied, or whether they have additional requests, etc. But you can gather a hell of a lot from reading these tables.

• Moussa Charafeddine

  Of course.

• Itzhak Levav

  Dr. Bertolote.

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• Jose Bertolote

  I think there are a few murky questions here that need some clarification. I would like to try to clarify a few things.

  First of all, this meeting is not a WHO meeting. It is a meeting of the WHO Collaborating Centre of Montreal with the Thai Ministry of Health. The WHO very proudly co-sponsored this meeting. It is not a WHO meeting.

  Second, I would like to tell you, very briefly, what is WHO. We have eight staff members from WHO here, we are not WHO. We are the WHO Secretariat. What is WHO? It is a club of 193 Ministries of Health, and we work for this club. That is what WHO is, the special agency from United Nations. Now, we are accountable to the Ministries of Heath. The Ministries of Health ask what you ask your staff, think of these issues, and we have two constitutional mandates. Nomenclature, therefore the intellectual disabilities/mental retardation issue is quite relevant, and second, obtaining and disseminating information.

  The Atlas is a perfect example of our constitutional mandate. Now, if you think that we are discussing a topic that is basically education, our Ministries of Health are not interested to listen to it. If you think its basically employment, our Ministries of Health will not be interested in it. It’s only relevant to WHO if its a health issue. If we, or some people, believe it’s not a health issue, why should WHO be involved?

  We, the secretariat to WHO, do believe it’s a health issue, an important health issue, too much neglected. Actually, it is a category of diseases ranging from genetic diseases to infectious diseases, given what is called in the official nomenclature, mental retardation. Of course, there is disability. We have also a classification of function, classified as disability. We are not here to tell you, or the governments, what to do. The governments have not yet asked what should be done to this category. Sometimes they ask. Sometimes there are political decisions. You may wish to know that, three days ago, the general assembly adopted a resolution declaring the 2nd of April the day of autism. There is no day for mental health, no day for intellectual disabilities, no day for depression. Political pressure created the awareness

  Now, that’s United Nations secretariat, we are the WHO secretariat of health. So, whenever we are discussing these things, please don’t blame us for not doing things on education, on employment, on housing. This is not our mandate. The United Nations has agencies to deal with that. What we can do is to flag, a given health condition, the relative weight of education, of employment, of housing, of other issues. But we can only flag. We are not here, or in Geneva, or in the regional offices, to tell what should be done with this category.

  My last word. The WHO produces guidelines, never norms. When WHO says that the quality of the air should be of this level, that’s our technical opinion. The governments make the decisions about the quality of the air, or the quality of the water. So we are a technical secretariat. It is the ministries that will make the political decision, they will decide what should be done, inclusion, or non-inclusion. We are there to advise, and we are here to listen to your opinion. This is why we are co-sponsoring this meeting which brings together probably the best experts in the world. So, we are listening to you, we’ll make our report, and that we’ll put forward. The ministries will decide.

• Itzhak Levav

  Thank you for the clarification. Let me take the privilege as chairperson and extend this session another 5 minutes, should there be more comments from the floor. And I ask you, please be brief, so we can have as many comments as possible.

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• Question

  I just wanted to react to a very important statement. I totally agree that the WHO relates mostly to health issues, but being a psychologist and sociologist, I know very well to what extent the health can be improved when the situation in education, in incomes, in living conditions, in water supply, is provided. And I totally agree that you have your right to deal only with health issues.

  But you are a very influential body of people, and very influential experts. So, if you in your guidelines and in your recommendations say, for example, that the inclusion of persons with intellectual disability is a way to improve their health through changing their way of life, this would be an important voice. Thank you.

• Question

  Hello. I’m from the United Nations Economic and Social Commission for Asia (ESCA), based in Bangkok, part of the UN family.

  First of all, I would like to thank you for this fabrication, because this will be a good instrument for us to do evidence-based advocacy for the policy-makers, as we are an inter-governmental organization promoting intellectual policy development.

  Two questions. Number one is a very simple, methodological question. I would just like to know, how long it took you to get the answers from 147 states, because it’s a huge number, and maybe you had been doing back and forth between you and one country to get the sufficient responses. Because we have done some surveys about the disability-related demography in this region, and we had a very hard time to get responses due to a reporting fatigue kind of phenomena.

  Question number two, in view of this rights-based approach, where the concept of disability is changing. I mean, it has been there from a long time ago, but it’s becoming more legitimate, that disability is interaction between one’s condition and the environment external factors, such as institutional attitude and information and other barriers. So, when it comes to these classification issues, I’m not talking about what Atlas is not, but I’d like to get your insight about how you actually want to measure these external factors that constitute disability.

  I understand that there is a need for comparability of classifications, but it seems to me that these are more medically oriented classifications, so in view of the rights-based approach to disability, I’d like to get your expert opinion about how you measure those external factors. Those are my two questions, thank you very much.

• Itzhak Levav

  I’m glad there are only two questions! Let me say, tongue-in-cheek, that with regard to the first one, in order to tap their success, hire the Montreal Collaborating Centre, they will do it for you. You could hire them, and they will do it, I’m sure. What I wish to say is, perhaps this discussion could be over coffee, and for the second one, which is more substantive, I would like the authors to react, if possible.

• Jocelin Lecomte

  With regard to the methodological question, we actually contacted close to 4,000 different focal points throughout the world, which allowed us to get 147 countries. So, it was 18 months of persistence, stubbornness, and maybe a little bit of not knowing what we were getting into.

• Question (cont'd)

  It was especially with regard to the classification. I understand there were salient findings about the uses of different classifications, in view of the concept of the disability being the results of the interaction between one’s condition and external factors. Maybe I’m wrong, but it seems to me that maybe these classifications are more referring to one’s conditions, so I’m not questioning about that part. When it comes to the external factors, which constitute the other half of the disability, how you measure those attitudinal barriers, institutional barriers?

• Shekhar Saxena

  I think that’s a very relevant question. I would say that our WHO international classification for functioning, which is called ICF, is a follow-up of another classification which was on disability but now we like to use the term functioning. It has a very good conceptual basis for a particular aspect called participation, which depends on the external world, and there is a nice conceptual model, although I must confess that there is not enough hard-core data on that environmental aspect, especially for intellectually disabled people. That’s one of the research challenges. Perhaps we do need to go into that, but as of now in the Atlas, we’re using the model, but we’re not actually collecting a sufficient amount of data on that.

• Itzhak Levav

  Dr. Saxena, thank you very much. I think that the content and the mood should be carried over to the next Plenary Session. Thank you very much.

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