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Perspectives from the WHO Regions

Panel

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Presenters

Chairperson

  • Jose Bertolote, Coordinator, Management of Mental and Brain Disorders Team, Department of Mental Health and Substance Abuse, World Health Organization

Introduction

  • Jose Bertolote

    Good afternoon, ladies and gentlemen. We now have three sessions called next steps. This one is from the perspective of the World Health Organization (WHO) regions, the following one will be from Non-Governmental Organizations (NGOs) perspectives, and the last one will be the perspective from a “labelled person”.

    It gives me a great pleasure to be here, representing WHO, being with my colleagues from the regions, some of whom over and above of being colleagues are also friends. And, you can find their biographies in the programme.

    We have Dr. Itzhak Levav, who also happens to be my preferred guru. Also here, we have kind-of our host, Dr. Vijay Chandra, who is the Regional Advisor for this region, SEARO. On my left hand side, my dear Therese Agossou, who asked me for more than a few minutes, because she'll be shy in English. Her mother tongue is French. She speaks a lot of other African languages she could share with you, but she's afraid of speaking English. Then, Jorge Rodriguez, my newest friend in this group of people. They will present the perspectives from their respective regions. Dr. Levav is representing here the European region. Dr. Levav, you have the floor.

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Next Steps: Perspectives from the EURO Region

  • Itzhak Levav

    Contrary to the other groups, which had their Regional Advisors as their advocates, the group that I represent is addressing some considerations and recommendations to the Regional Advisor, Dr. M Muijen.

    We were an "intense group", highly involved, very committed. It comprised of ten individuals representing nine countries, interdisciplinary, largely from NGOs, although there were governments, etc. We had learned the Atlas-ID by heart, Chère Dr. Mercier: We know every single page by heart! Seriously, we have made considerations based on the findings of the Atlas.

    To say it very simply, the European region should attempt to correct what needs correction. Obviously, it should aim at maintaining what has been achieved. We have established few additional objectives further to the Way Forward, as submitted in the Atlas. The group is suggesting what needs to be done in the short- and mid-term planning in several domains of action in the European region. The group also suggested partners that would collaborate in future action.

    First, although the group took good notice of the information that has been gathered through the Atlas, there was consensus that more data were needed. Particularly, with reference to epidemiological data, that will identify the extent and characteristics of the problem. Second, the group recommends studying the risk of premature mortality of the population that has developmental disabilities, or intellectual disabilities. Third, the group emphasized that some studies should be conducted on both, mental health and general health problems. Fourth, the group recommends to study the family burden with a double purpose, for awareness raising, and to advocate for the provision of services and support to the families. (In some regions these families are overwhelmed by poverty, and the additional care of a member of the family that might need particular care could really make them collapse.) I think that there was quite an agreement that this data is needed, and that we do not have it. The group submitted that however essential these research studies are - they should not delay the initiation of actions which are needed immediately, based on the data that was gathered in the Atlas.

    What would be the use of these epidemiological data? One, for programme and service planning. Second, for advocacy vis à vis the stakeholders and, particularly, the decision-makers.

    A second component of the recommendation refers to training. The group was very concerned over the information provided in the Atlas, only a minority of countries reported graduate programmes for paediatricians and other health personnel. The group discussed the need to develop a special curriculum for general psychiatrists, since child psychiatrists rarely available in some countries. There was consensus that the Atlas data are adequate in this regard thus a firm recommendation could be made now to WHO/EURO to upgrade efforts in the promotion of training for the relevant health personnel. The group insisted, that training, should not only address children but people along the life span.

    The other item that was discussed referred to resource mobilization. It was the understanding in the group that WHO leads action in the health field, but health by itself does not cover all the needs that exist in this population group. For those components that WHO was not prepared to take leadership, the group insisted that it was absolutely necessary to develop linkages with other sectors, such as NGOs and the educational sector.

    I think that this covers what was discussed, and the recommendations that were made. The group thought that they should be very few, and achievable. To the group, the adoption of these recommendations could make a difference.

    I would ask any member of the group if I omitted mentioning what was discussed.

    To summarize, we are going to submit a memorandum based on this discussion to the Regional Advisor in Europe to advance subjects or issues connected to the research for advocacy and programme planning, training, mobilization of resources, including networking. Thank you.

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  • Jose Bertolote

    Thank you very much. For the sake of time management, please keep your questions until the end of the presentation. So starting from the other side, may I invite now Dr. Jorge Rodriguez, the Regional Advisor from the Americas region to present the next steps from that perspective.

Next Steps: Perspective from the AMRO Region

  • Jorge Rodriguez

    This is a very brief presentation about next steps from the perspective of the Pan-American Health Organization Regional Office of the WHO. First, the main element in this framework is our Strategic Plan 2008-2013. It is a Strategic Plan based on the similar document of the World Health Organization, and we suppose that the strategic objectives in the plan will guide our work in all our technical cooperation with the country in the field of mental health, disability and rehabilitation.

    But in The Pan American Health Organization (PAHO), we have another document. This is the Health Agenda for the Americas. This is the programmatic document, approved and signed by all ministries of every country in the region of the Americas. Moreover, we must mention a third document. This is the Resolution of the Directive Council of the top body of government in the PAHO region, and this is a specific document about disabilities and human rights. Therefore, we have three elements in this framework.

    Briefly, lines of action, what we are working on. First, support in the countries in order to develop national policies, plans and programmes. Second, strengthening of rehabilitation service in the health system, and prevention programmes, especially, of course, with the government, with the Ministry of Health. Third is the development of technical training material, specifically in order to develop the process of training in the countries. The main element is developing national capacity. Human rights is another important point. We are working in conjunction with specialists in human rights in the WHO organization. Care to the vulnerable population, for us, is a very important issue, especially in poor population, population affected by the war. This is the point I am going to mention, the population vulnerability.

    Advocacy is another line of action that we are supporting at both the country and the regional level. The other rights and actions in relation with providing assistance to the country for the collection, analysis, and use of data. Research and dissemination of information, this is very important. This morning, we were talking in our groups about this point, to support the networks in the Pan-American region, including government and NGO, agencies for the nation, or international agencies, professionals, families, user organizations, private sector and the media. The last line is monitoring and evaluation.

    I would like to briefly describe a group of priorities for 2008. Human rights is the first point, second is uses and applications of international classifications. Problems with standardized language and diagnoses. Information systems, including the component on disability rehabilitation in national health information. This is an important problem and we need to work in this direction. Support and strengthen programmes of social protection in different countries, access to rehabilitation service in the health system. Prevention programmes, human resource training, development of human resources, CBR, you know perfectly, coordination among different solutions.

    And finally, I would like to mention specific activities in 2008 that we are preparing. First, the launching of the Atlas at the regional level, and we are going to begin working on the preparation of the specific document of a regional Atlas. We were talking about this idea with the Montreal Collaborating Centre, and with Dr. Saxena, and it's an important task in 2008. We think it's important to disseminate not only the global information, it's necessary to disseminate data more specific about the countries. Disseminating the entire Atlas to the countries in the first semester, experiences and lessons learned. And we are preparing a workshop for discussing and analyzing the current situation, the perspectives and the next steps in the first semester of 2008. And defining country priorities for implementing PAHO technical cooperation’s. We want to have clear priorities in each country of the region, and focus the technical cooperation according to these priorities in each country. It is different, the situation among countries.

    And finally, I am thinking of support, implementing national plans in selected countries, not possibly in every country of the region but probably a pilot project. And we are also preparing a regional meeting of user and family organizations, for October 2008 in Santiago, Chile. Thank you very much, these are the main ideas that I wanted to share with you.

  • Jose Bertolote

    Thank you, Jorge. As I said, please keep the questions you may have until the end of the presentations. Now we move on to the African region. May I invite Therese to make her presentation?

    During the time she adjusts the IT, I know that there was a discussion among the people from the Eastern-Mediterranean region, however we do not have the Regional Advisor here. So, I'm wondering if after her presentation, someone who discussed the EMRO would be willing to come and let us know which were your main conclusions, after Therese' presentation?

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Next Steps: Perspectives from the AFRO Region

  • Therese Agossou

    Jorge has already prepared you on the fact that you have to be more tolerant because I will do my best to be more comprehensive on these presentations. Before reporting what we discussed this morning with the AFRO group, we would like to let you know again some specificity of the African region.

    The WHO African region, which is different from all of the continents, has 46 countries. The specificity of this population is that children and youth represent between 40% and 48% of the total population. So we can say that this population, regarding issues and concerns of these past three days, is a more vulnerable population.

    Regarding the burden of condition, the burden of disease, and the main factors that lead to intellectual deficiencies and mental retardation, these factors relate to the societies, individuals and organizations, but I will just emphasize the importance of cultural component aspects, and the importance of the educational aspects, and the belief; because if we want to work at the community level, we should take into account these components in our work with the parents, with the children, and with the relatives.

    We want also to emphasize the fact that the health system, the services and resources, are not always in a good condition. And we also have an environment of poverty, conflict, war, and disaster. But if the African region is aware of all that, we can solve the wars, and we can also solve the good things, the good practices, and we also have a strong human potential who can be mobilized. I will pass the question of a political option because we have already discussed that this morning.

    We just wanted to point to the situation that in the African region, it is true that the society is important, the community is important, but also the individual is important for different reasons; because for each person, for each child, it is also important to know who he or she is.

    What is the key point we notice relative to the Atlas? It is that the conditions related to disability, and to the person with disability, these conditions are neglected, and the person is exposed with a lower system of protection. It is important to work on political issues, to work on society, and to work also on individuals. This domain is not really a priority. We have talked already about that. The Atlas also shows us diagnostics made through true professional opinion. We wanted to emphasize the fact that it can be a situation where one individual has the power to decide who is good and who is not good. But it is also important because if training is given to these professionals, we may see changes in their opinions.

    So the Atlas also shows that in most of the countries of the region, it is especially the The International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD-10) which is a reference. And we also see in the Atlas that the sources of funding of the different interventions and associations are, I wrote too many, but it is not too many but so different. We need a mechanism of coordination at the country level to follow and monitor funding. Another thing that the Atlas shows us is that 52% of people with difficulties do not receive any benefits from governments.

    What are the other points? It is important that at community level or at country level, we have a real utilization of services by people with disability and by their families or their relatives. NGOs, organizations and institutions who are more involved, that’s public service, and we also have a lack or weakness of data collection and research. Service providers who, as indicated in the Atlas, are specialized, conventional providers, we see that they talk about psychiatrists, medical officers, psychologists. We see in the data and in the measures that we also utilize the non-conventional care providers.

    What are alternative resources which we have in our region? We rely on people because in our region, we believe that one person is a medicine for another person. It is to emphasize that the human resource is important in these situations. We also have some people who can be volunteers, who work with the families, and with the people who have the difficulty. We want to emphasize the fact that it is particularly the women who are involved in this work. We also have the men, as parents as grandparents. But what is important to focus on, for all this work, are the people, including sisters, brothers, peers, and the person with the disability.

    I will pass the section of the caregiver. I will also pass the section on members of the association, except to say that the group based on an activity, on a religious association, or on self-help is also important. I want also to emphasize the fact that in our region, we have traditional women who can help for delivery, for health. Midwives. We want also to emphasize the role of tradition, with a situation. And we also want to emphasize the important role of the local media, including the local newspaper, and the local radio, who focus on the local situation.

    When we met this morning, we discussed the fact that for the associations and the NGOs, who take care of the people with disability and their families, we have to make a map for each region. It is important to know who does what in each country. And we already emphasized the fact that we have associations who work in Tanzania, Mama Josephine talked about that, and Zanzibar, we have associations in Malawi, we have in Zimbabwe, Lesotho, Zambia, Uganda, Gambia, and Kenya. In the AFRO region, we will continue to identify the different groups, and especially to identify the work that they have done.

    We also discussed the question, how can we reach the people who have needs, in the country and in the community, how can we help those with the needs? We also discussed the question of power, and the question of political people who may have the way to deal with the things, but who may not in relationship with the population. We also discussed that it is always better to do something, based on the needs of the population and the community and the family.

    What are the actions for change? We say that it is important to implement the measures of the different Conventions. At the beginning, it is easy to do straight legislation, but by working from the Convention and the measures, it is possible to be more concrete with the community. We also need more advocacy, but it will be advocacy based on evidence, based on documentation of the good practices that have been done at the family level.

    We also need to share updates of information, because sometimes people have information in relation with their beliefs and their education. It is important to have that information. We don't say that it is the good, the right information, but it is information updated and based on evidence. We also speak about capacity building, based on available resources. We also talked about sharing information and systems and working with the system using the existing network. And we also talked about support and the work of NGOs, taking into account the interests of persons with disabilities and their families.

    We discussed some other future actions for the region. One is to advocate for development, and the strengthening of the mechanisms of funding to avoid having situations where we have a lot of money, but the money is not necessarily for the people who are in need. And to have coordination between private sector and public sector in the country. We also have to work to facilitate support and accessibility of care for these people, and to undertake research for improving interventions and the quality of results.

    When we talk about the research, we sometimes talk about the simple things. But it is important to participate, because if we don't know, for example, what is the name of some difficulty in the community, we cannot understand some behaviour or some practices in the field. We have also said that these different situations could be an entry point for more comprehensive approaches. We also decided to plan to strengthen the data network of those people who responded to that Atlas. We have seen that if it is possible for each person who helped before to have the document, we should send the document to each of them or to allow them to print it in a website, to have one result of the work they have done, and to provide them with a network. We also talked about a mapping of the existing associations and NGOs. There are some questions that we have discussed.

    When I look at you, I think that maybe it was difficult to understand what I am talking about, but I try to do my best.

    Thank you for your attention.

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  • Jose Bertolote

    Merci Thérèse, pour la présentation et pour ton effort en anglais. Je crois qu'on a bien compris et que le message est passé. I think you understood basically what she wanted to tell us. I understand that Dr. Moussa Charafeddine will present the conclusions from the Eastern-Mediterranean region country. I would ask you to be as brief as possible, and not to speak Arabic, please.

Next Steps: Perspectives from the EMRO Region

  • Moussa Charafeddine

    Thank you, Mr. Chairman. I'm sorry because the EMRO Countries are not being represented by a lot of representatives. I'm from Lebanon, and I'm President of Inclusion International for that region, at the same time, so I will have this chance. I have written a very brief recommendation to EMRO, to be done by our EMRO, our East Mediterranean region of WHO.

    We are hoping that EMRO will be involved in parliaments of legislation, to recommend the governments of Lebanon, on the legislation on the right of health and advocacy. We would like WHO to be involved in capacity building for medical and paramedical, especially capacity building for persons with intellectual disabilities and their families.

    Improve preventive measures by promoting well-being indiscriminately, especially in maternal and child health, involvement of EMRO in comprehensive early detection, and early intervention to promote inclusive education, within the programmes of primary health care, with cooperation with the Ministry of Education.

    Involvement of all NGOs especially, and not governmental, because I know that WHO is a gathering of governments, so I would like that this kind of work be done in cooperation with the NGOs, especially with people with intellectual disability and their parents and their families. Join efforts with others in campaigns for raising awareness, attention to be paid to endemic neuro-degenerative diseases in the region. This kind of question was not raised in the mapping, but it is very important to pay attention to that fact.

    Facilitation and provision of all medical supports, especially for persons who suffer from enzymatic deficit, this was also not also mentioned in the map, in the Atlas. It's very important to concentrate on cooperation and exchange of good practices among the WHO agencies or WHO regional offices around the world. That's it. Thank you very much.

  • Jose Bertolote

    Thank you very much for the conciseness and precision. I'll transmit to our Regional Advisor in EMRO, who sits in Cairo, the recommendations from your group. Thank you very much.

    Now, to close the presentations, we move to one set of presentations that, as Dr. Vijay Chandra reminds me, includes two thirds of the world's population, which covers the SEARO and WPRO regions. Dr. Chandra.

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Next Steps: Perspective from the SEARO and WPRO Regions

  • Vijay Chandra

    Yes, please remember that. We now talk about two thirds of the world's population. So it's a tremendous responsibility on the South-East Asia Regional office and the Western Pacific office. We also took note of the fact that 70% to 80% of the communities are rural. If 70% to 80% of the communities are rural, then 70% to 80% of the people who need services are rural, and remote, and tribal. So please remember that we have to reach out to everyone. That it's OK to sit in the capital cities, or a nice plush office saying we are doing a wonderful job, but the people are way out there, so that's another thing that we took note of.

    And the second thing we decided, that there are issues of importance to South East Asia, which are basically very large countries, India, with 1.1 billion people, Indonesia and Bangladesh, over 100 million, they are so-called mega-countries. Then we have very small countries, such as the Maldives, with its 300 thousand people. So the issues here are more size, whereas in the Western Pacific you have very high income countries like Australia, New Zealand, Japan, Brunei, and Singapore. And then there are very low income countries like Viet Nam, Cambodia, Laos, things like that. So, these low income countries fit in more into the SEARO perspective.

    So, what we thought we'd do is we'll have one presentation from Lynette Lee, from Western Pacific. She'll be presenting the high income country perspective. And we'll have two presentations from Dr. Panpimol, and from Jayanthi Narayan, as you know very well, or you will have learned by now that these are two of the foremost experts that we have, and who have hands-on experience with this programme of intellectual disability. So they are the experts.

    May I turn the floor over to you, Jayanthi, and Dr. Panpimol, if you please.

Next Steps: Perspectives from the SEARO Region (Part 1)

  • Jayanthi Narayan

    I would just like to begin by quoting a Nobel Laureate poet from India, who once said: “The task ahead is not how to wipe out the differences, but to live together with the differences intact”. I think that suits very well our situation f.

    Our group, I will proudly say, has been working since last evening, since dinnertime. The group had been working for this session and had been contributing very actively, so much so that this morning we continued and someone had to come and tell us to wind up because the morning session had to star So thanks, all the members who have participated, of course, under the leadership of Dr. Vijay Chandra, everybody had much to say, and what we are going to see here is what was discussed.

    First we thought of advocacy as an important point. Intellectual disability needs to receive direct focus. Many times in many countries, all of us say “great” but when we talk of all disabilities, intellectual disability gets the last seat, it is the last priority. And the visibility is also not as great when you compare the support being given to other disabilities, for it to become a focus.

    Sensitization across persons with disabilities on issues on intellectual disability; this point, actually, came from Mr. Reddy, who is here, who is a wheelchair user. He said that, among us persons with disability, we often believe that persons with intellectual disability can't do anything at all. And it is an eye-opener for us that, if trained and given the right support and opportunities, they are capable of performing independently as contributing members of the society. Therefore, it has to be a point to be noted that across disabilities, there should be sensitization. And there should be self-advocacy groups, which all of us know, we have been repeating on that, and self-help groups, aiming at exercising the rights by persons with intellectual disabilities.

    Specific Acts on disabilities are enacted in a few countries. In some countries it is in process, and some countries do not have it. So, there is a need for Acts. All countries must have an Act on disabilities, with specific place given to intellectual disabilities. In India we have three Acts, and all the three Acts have a specific place for intellectual disabilities. Differences between state and central level are to be looked at. This came from the participant from Sri Lanka, where she said that the central level makes Acts or legislation or policy, and at the state level this is not accepted. Therefore the implementation does not happen. There needs to be coordination between the central and state levels when we talk of action policies.

    In procedural difficulties, to claim the rights of the persons. They are there in all the countries, or most of the countries, I would say. There are rights, but to get there, the paperwork and procedures are so much that the person finally says I would rather be without it. This should not be the status. It should be made easy so that they receive what they deserve to get.

    The technical aspects were another area where we talked about the training and the capacity building. And all of us know that there is a need for retuning all of the professional groups who form part of the multidisciplinary team, to have the right focus and positive outlook towards intellectual disabilities. Awareness and sensitization programmes to all the stakeholders. We use the term awareness here and sensitization because this may be short but sharp programmes to be given to them so that the government officials or the community leaders, even the police system or the transport, who are often insensitive to the characteristics and needs of persons with intellectual disabilities. They need to be oriented, and once oriented, it is also proven that they do understand and therefore give the right support.

    And in-service and pre-service training for the professionals. Pre-service, of course, yes. In-service is intentionally mentioned so that they are updated periodically, not having the old school of thought. There are new developments all the time and therefore they are updated. Development and dissemination of resource material, and we've been hearing about the material that we can get through the Internet, anything is available. And also other modes by which resources reach all the stakeholders. Use of technology optimally. Of course, research and development has been repeatedly mentioned.

    came from one of the members in the group. We keep talking about them, how we really engage them so that they are productive members and they are proud of what they are doing. And specific focus on persons with severe and profound levels of intellectual disability, which has not been discussed in much detail throughout the conference, but altogether a different group, and the whole methodology of working with them is a little bit different from the group with milder disability. Therefore, this needs to be looked into. And Dr. Panpimol will continue. Thank you.

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Next Steps: Perspectives from the SEARO Region (Part 2)

  • Panpimol Lotrakul

    I will present the issues from our group. The first one is organizational aspects. I think that evidence based practices should be identified, documented and shared. Especially in our region, and scaling up of models that are proven successful, and to find local solutions, and then adapting the model to suit local country-level appropriate needs. And more about organizational aspects. Work toward sustainability of best practices through teamwork, because we always have the experience that the best practice is begun, but then it is not sustainable in our community. And we also think that one solution is teamwork, to be system dependent, not person dependent. We have a lot of models with the name of a particular person, and then it dies because the person leaves this field.

    And the use of technology, assisted technology and the Internet, that we can share and we can do a lot for our organization. The next aspect is about funding. Governments are to allocate funds exclusively for programmes concerning intellectual disability, and utilization of government funds through innovative programmes. I think this is very important for government organizations: how can the innovation of the programme, the centralized approach involve itself, and help global NGOs, governments to facilitate programmes of various agencies and all concerned government departments to allocate funds for disability, particularly for intellectual disability, and sustainability, after programme funding by NGO or UN and then after the project periods, governments to absorb the project.

    We think we must keep in mind universal desire to facilitate inclusion of people with intellectual disability. This will not only help persons with intellectual disabilities, but also those who do not know local language in a city or country, just think of the sign for a toilet. It doesn't only benefit people with intellectual disability, but everyone can understand and can benefit from this. And another thing that charts the road ahead is that it will have the person with intellectual disability travel with dignity in an inclusive barrier-free rights-based society.

    And now may I invite Mr. Reddy. He would like to contribute some perspectives.

  • Vijay Chandra

    Just for your information, Mr. Reddy is the Disability Commissioner in the state of Andhra Pradesh, and he's a strong advocate and leader of a very well organized programme in disabilities in general, in which intellectual disabilities apply.

  • Presentation by Mr. Reddy

    Dr. Vijay, a small correction. I am the Project Manager for the Royal Bank on this project, which is implemented by the government of Andhra Pradesh, not the Commissioner. This project which I am referring to is being implemented in the state of Andhra Pradesh. The population is about 66 million, which is equal to Thailand.

    I would like to tell briefly what we have done in the recent times. The project actually has got a field staff of about 300 people, 325 people who are working at the field level. And we have been working mostly on the livelihoods, and very recently we have started working on persons, supporting persons with intellectual disability.

    Because our project is being implemented in the rural area, our biggest problem was to get trained special educators to work in that remote area. So, thanks to experts like Dr. Jayanthi Narayan, we have conducted recently a TOT, training of trainers, where about thirty coordinators, field level staff, and supervisory staff, got training as trainers. We adopted a manual that we distributed to all participants in this workshop. And those thirty trainers in turn have trained another 150 to 200 field staff, and all of them now are giving planning programmes and services for persons with intellectual disability. So, the project is going to end in March 2009, and I want to tell you what basically we would like to do in the project in the coming three years.

    We would like to assess all the people in the project and get them all the programmes and services that are required to them, and deliver those services at their home. That is one thing we want to do. And we also want to take up in a big way to sensitize the community in this area, like teachers, local government, representatives, and health workers, and other influential community members in this area, to the various issues of intellectual disability.

    And then make sure that a lot of social capital is then ready by the end of the project, so that we also have grants to expand this programme to cover our entire state. Hopefully when all this work is done, by 2009, we'll be ready to further scale up the project to cover our entire state. That is our project plan. Thank you.

  • Vijay Chandra

    Thank you. Now, while Lynette is coming up, just for your information, in our region we have two outstanding centres which provide training in management, care and development of persons with intellectual disabilities. One you will see tomorrow, Rajanukul Hospital, and the other one, where Dr. Narayan used to work, is called the National Institute of Mentally Handicapped. And the manual which was given to you was produced while she was at the National Institute of Mentally Handicapped.

    If you want to see a project working very well in the community, you can talk to Mr. Reddy. He'd be delighted to show you an actual implementation of a community based rehabilitation programme. Lynette.

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Next Steps: Perspectives from the WPRO Region

  • Lynette Lee

    Greetings to everybody. My name is Lynette Lee. I am a Rehabilitation Physician and I've been involved in health policy development for people with disability in Australia. The Western Pacific Region of the WHO has both very large and very small populations. The group who met this morning came from the higher income countries in the Western Pacific region - Australia, New Zealand and Brunei.

    The general living standard in these countries is quite high so for us the key thing in the implement of the Convention is our governments. Some of us have monarchies, some have democracies, some have combinations of those things and our governments have a lot of money because we are taxed at a high rate. The difficulty for some of us is that the provision of services by the government is based on the legislation. So, our Minister for Health is bound to act and provide services based on an Act about health services. And the Disability Services Minister is bound by the Disability Services Act, etc. etc. So that means there are silos, which sometimes means we develop difficulties with resource allocation because we have legislation about health services, not about health status of people.

    On the whole, this group of countries has universal health care and the health care that is provided is of a high standard.

    So we thought we'd think about things in terms of themes for inclusive health services, and our four themes were to think about

    • the fact that the person has to have a healthy life style
    • that health risks are identified early
    • that the person has access to appropriate health care services, they being both the generic health services, the universal inclusive services, and well qualified specialized health services when required
    • and that outcomes of health and health service provision are measured

    And the dimensions that we want to stress are that we are talking about the person with the disability, the families, and the providers. So each of those four areas of concern are to be developed with respect to these three dimensions.

    Now, amongst providers we are talking about

    • the carers, who are assisting people with disability to have a healthy lifestyle
    • the clinicians who are caring for them
    • the organizations with whom they're associated who may in fact be providing the assistance
    So, in terms of a healthy lifestyle, we're thinking about safety, shelter, nutrition, freedom from infection, and appropriate medication use.

    In terms of early identification of risk, we're talking about carer awareness, and practices that facilitate annual comprehensive health checks. By that we mean a full history and a full physical examination and appropriate screening being available to people with disabilities.

    In Australia, we have a breast screening service for all women over the age of 50, and we recruit women to that service by going to the electoral roll. Our women with intellectual disability are not on the electoral role.

    We mean home visits. Home visits are about inclusion, and about including people with disability to be able to participate in their health status and in their health care. We want disability friendly hospitals and health centres, and we want disability-aware clinicians, both the generic and the specialized services.

    We are concerned about outcome measurements in terms of policies, reports, databases and research.

    So, with respect to this matrix we think that there are issues for development across the levels of support, and across those groups of providers. The key concerns for the higher income countries, we think, are the funding silos, the aging of people with disability, and the aging of their carers.

    So what is needed? We think there's a need for awareness trickling up. As it's been doing over the last 20 to 25 to 35 years in the higher income countries, we want it to continue to trickle up from the carers of people with disabilities, and from the people with disabilities themselves.

    We feel that there is a need for champions at the top, at the top of the government, at the top of the organization, at the top of the health system. We think that training will be important in terms of individuals, families, clinicians and whole communities.

    So, in terms of how and what we think we could be doing, we thought about it in terms of what we can do as individual countries, and what we can be doing at a regional level. From the point of view of individual countries, we think we need a generic ‘plan’, for inclusive health policies. So we feel there are two areas of concern. One is governments, and the other is training for implementation. In terms of governments, we feel that we as individual countries must ‘seize the day’.

    So we will use the ratification process of the UN Convention, but I have to say, some of us will be very careful about using the Atlas, because if we show the Atlas to some of our governments, they may say “Oh, you're actually OK. Go away.” But we will use the UN Convention process - we will find our champions and we will seek national strategies, laws if necessary, and I think in some countries, it will actually require laws, so that governments will implement the policies that are needed. We want to spill the silos.

    In terms of training implementation, we as countries can be looking to our schools, our universities, and our educational systems to be developing the training and the educational programmes that are needed for individuals, for their families, for our care partners, and for clinicians and administrators about health status and health service provision.

    And at a regional level we think that, firstly, we would like to know to whom should we be talking in the Western Pacific region? We're particularly perturbed that the Western Pacific Region Mental Health and/or Rehabilitation WHO group don’t have an official representative at this meeting because we would have liked to meet him or her.

    At another level, regionally, we think that our collaboration is going to be about sharing knowledge, sharing our research, but particularly continuing to have conferences like this so that we can share what's being achieved.

  • Jose Bertolote

    Thank you very much. Just one quick remark. Our Regional Advisors in both EMRO and WPRO are totally alone and responsible for the whole mental health area and they don't have any collaborators that they could send here. Both had previous commitments during this week, and they simply had no one else that they could send. That's the limit of our meagre human resources in these two regions. They are Dr. Tien Hung Wang, in Manila, WHO office for Western Pacific Region, and Dr. Daggi Yasimi from the Cairo office, Western Pacific Region. Yasimi in Cairo, and Wang in Manila. These are the Mental Health Regional Advisors who are in charge of anything related to mental health.

    The main message I take to WHO from this presentation is that there were three things that were common in all presentations, which were awareness raising, sharing the information, and training. For the personnel, I mean. Not special education, which appeared in some but not all presentations. Also the issue of human rights appeared in all presentations.

    There are two main topics that particularly captured my attention, the first which was mentioned at least three times , is the importance of the local realities, local communities, local languages, so that you can really understand what you're talking about. The second topic that was stressed is that the majority of the world population lives in rural areas, in poor countries, so if we really want to be equitable, we have to think that the majority of the people we want to help here are in remote areas, in rural areas, in poor countries, in poor poor resource areas.

    And the other important message from these meetings, particularly important for the WHO, is the importance of supporting NGOs. I think this became a bit clearer for you that we, the WHO secretariat, are very weak in influencing governments. We can produce instruments, good instruments, we can produce tools, we can share information. However, civil society is much more powerful than we are in putting pressure on governments. The civil society votes. And governments are sensitive to voting people, not to technicians. We can prepare the technical materials, but it is only with the strong support of civil societies that we will be able to reach what was just mentioned in the last presentation, how to mobilize, how to trickle up the awareness of the issues you were just talking about. So, we rely on strengthening our collaboration with the NGOs so that we can combine our efforts and see where we can hammer with greater opportunity.

    I thank you once again, and I suggest that if you have questions for the presenters, take advantage of the coffee, tea, refreshment, warming up break, whatever it is. I thank you very much for your attention, and I hope to see you next time. Goodbye.

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