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Perspectives from NGO's

Panel

Presenters

Chairperson

  • Therese Agossou, Regional Advisor, Mental Health and Substance Abuse, WHO Africa Regional Office (AFRO)

Next Steps: NGO's Perspectives: Down Syndrome International

  • Balbir Singh

    Thank you, and good afternoon.

    DSI congratulates the World Health Organization (WHO) and the Montreal Collaborating Centre in developing the first Atlas: Global resources for Persons with Intellectual Disabilities; and the organizing Committee of the 2nd International Conference on Intellectual Disabilities. DSI is privileged to officially endorse it.

    Down syndrome is the most commonly diagnosed genetic condition that is associated with Intellectual Disability and is usually diagnosed at birth.

    DSI believes in avoiding labels, and the term Mental Retardation certainly is not acceptable, and hopes for the ‘Next Step’ by WHO and other agencies will be to eliminate this label, as it devalues the person.

    DSI has an on-going commitment to ensure the quality of life and rights for all the people with Down syndrome. It encompasses research and facilitates its dissemination. It will pursue collaborative efforts with International Organizations like International Association for the Scientific Study of Intellectual Disabilities (IASSID), Inclusion International and other who have Intellectual Disabilities as their interests. The World Down Syndrome Congress will continue to be the main platform to discuss these.

    DSI is pleased that WHO recognizes and endorses the critical role of families. We and all DS organizations have always ensured the Inclusion of families in any policy, plan and initiative and will continue to do so; and will have strategies in place to empower families with relevant information. The power of the internet will be harnessed to enhance this empowerment.

    More importantly, DSI has proactively engaged persons with Down syndrome, respected their opinions and needs. DSI will take every effort to make relevant information available to them in a language that is easily understood and accessible.

    Much as DSI supports the move to make Intellectual Disability as a public health issue, it does not label Down syndrome as a disease or a medical condition. We are wary of ‘preventive strategies’ proposed; as very often, ‘genetic counseling and ante- natal testing’ is synonymous as a “search and destroy” mission. However, DSI certainly promotes a healthy life style that will prevent a secondary disability.

    DSI in principle supports the adoption of a right-based approach to disability but this should be done with flexibility and adaptability to the country’s sensitivities and cultural norms.

    DSI will attempt to mobilize, optimize and facilitate the sharing of resources. It is proposed to have a Mentoring Programme, where organizations which are better established ‘mentor’ those especially in developing countries; thus addressing disparity in services.

    DSI launched the Inaugural World Down Syndrome Day on 21 March 2006; it was an enormous success with profound outcomes. WDSD in 2007 had similar results. We take this opportunity to make a formal request to the UN & WHO to endorse and declare 21 March as WDSD. (Afternote: WHO Representatives agreed to promote and publicise WDSD through their usual channels/media.)

    DSI certainly does not encourage Asylum-type institutions. Down-sizing these facilities in favor of community based care of course are the best option. Some countries may need some guidance and support for this to happen for the desired outcomes.

    DSI is disturbed be the inference that “Care of children with Intellectual Disability by productive adults represents a substantial burden to society”. This statement is not absolutely accurate and has negative connotations.

    Monitoring change and standards of service delivery requires an intense and workable system with benchmarking and measurable yardsticks: DSI may want to collaborate with other International Organizations with regards to this.

    DSI supports the notion that Inclusion of persons with Down syndrome in all facets of life is the best option and that the cost of exclusion is obvious and we will continue promoting this.

    DSI supports the proposal for a Disability Secretariat at WHO, to be able to take the next steps and move forward, we will practice and promote good governance and make efforts to sensitize policy makers.

    DSI thanks all of you and is confident that the Atlas is an excellent initiative and resource which will enable persons with Down syndrome and other intellectual disabilities to have a better quality of life.

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Next Steps: NGO's Perspectives: Handicap International

  • Jean-Marc Boivin

    So, dear colleagues and dear friends. First of all, I want to thank all the organizers of this important meeting because I think it's a crucial issue in terms of implementation of the dignity and all the processes we'd like to have for the disabled people, especially people living with intellectual disabilities.

    When I began working in France, in a rich country, in a centre for people with intellectual disabilities, I was very shocked every evening to see people coming to the door, to see our teenagers leaving the centre. I was so angry because I thought they were stupid, and maybe curious, and it was something very hard for me. In fact, now I think that it was that they didn't know anything about intellectual disabilities, and that they just wanted to try to understand.

    And in my country at this time, in France, all children with intellectual disabilities were completely excluded from mainstream services. School, at first, transportation, leisure, sports, in one word, life. And everything was just specialized because it has been expected and created by families themselves. They wanted at this time to have specialized services in France.

    So now, 28 years after, what has changed in the world? Certainly in my mind, the way we look at them, because we have more information on disability, and surely because people living with disability are fighting to be recognized as human beings, to have a place in society, and to take a part in their community and the development of their countries. But maybe not enough and certainly not enough for people living with intellectual disabilities.

    We have maybe changed now, because we had a new Convention for the Rights of People Living with Disabilities. This is an important step, but we must be aware. This Convention is a tool, it's not a final step. Everything has to be done. It's just a new beginning for all of us. So what do we do now? For the future? How to use this Convention?

    Handicap International is a French Non-Governmental Organization (NGO) of professionals involved for and with people with disability. Twenty five years ago, we were born in this country, in Thailand, at the border with Cambodia, and now we are working in 60 countries, all around the world. Mainly in developing countries, that means in poor countries. And also in the humanitarian crises. We have also actions in such situations.

    So now the challenge for us is to work daily and closely with organizations of disabled people, at local, regional, national, and international levels. And with all actors involved in development from prevention to full participation in society, through services, training, etc. Our first challenge is to contribute to change of practices, and maybe the way of thinking for all stakeholders. States, governments, UN agencies, international NGOs, national NGOs, NDPOs too, with media, also with corporations and communities. People with intellectual disabilities cannot be excluded, forgotten or ignored. And each time we are used to hearing, from donors for instance, “Sorry, your project is very interesting but this kind of project is not a priority”.

    So, because of a new Convention, especially because of Article 11 and Article 32, it will very soon be forbidden to have such answers because it has to be included in any kind of a project for development. So we have to be careful, we need to promote the Convention through states, communities, DPO's, media, we have to explain what this Convention is made for.

    We have to organize monitoring of this Convention, of the implementation of this Convention, because we know that the states can sign the Convention, doing not enough or doing nothing in terms of change, how they change their policies without mobilizing all the administrations, with budgets we need, at each level, for an effective inclusion of people with disabilities, for their families, and their organizations. We also have to organize monitoring of the international corporations to see that they effectively include disabilities in their programmes, and we also need the money to promote inclusion.

    At the grass root level, we try to promote good practices and exchanges within all the networks of GPOs and NGOs, but change is not impossible if we are able, all of us, to share our experiences, differences and capacities. So the first step is certainly to change the collective representation of misunderstandings we have on disabilities, especially on intellectual disabilities.

    Too often, I see families thinking they are guilty. The shame is no longer acceptable. We must tell them to feel confident and respected. We must first tell them to be visible, and listen too. Too many countries continue to hide or ignore this population because they know nothing, or not enough, about disabilities.

    We must promote data collection, surveys, and assessment of needs. I am very surprised, when visiting countries, to meet Ministers of Social Welfare or Health who say “Oh, you're welcome, but we have no needs in this country because we have no disabled people”. So, it's not a dream, it's a nightmare for me. So we also have to prove always, everyday, that it's also not the truth. We are always, more and more, involved in programmes with organizations of people with intellectual disabilities, and we try to facilitate a strong network of governments, GPOs, NGOs, who meet and develop ways to work together. We are also solicited by governments, asking us to support new inclusive policies or to make surveys. We try to promote local GPO's, and also, often, to support them.

    So many people are definitely classified in the wrong categories. A young boy I met last winter was identified as having an intellectual disability because he was deaf. There was a teenager living with Down syndrome, and the doctors' diagnostics were saying that he is unable to live alone, he will never speak, he will never do anything. We also have to change this.

    In inclusive education programmes, in mainstream schools, and also with special education according to needs and desires. In health services, we need to have professionals able to know about intellectual disabilities. Everyone also has to have access to health, and cannot be excluded because of his disability. In social welfare, we have the same question. In employment, no one can be excluded from employment policies because of disability. And in the space of life, especially in family life, we must understand the personal desire of each one, without prejudice, even each difficult issue, we have to listen and find the best way to answer.

    At each level, we must promote inclusive development, and because we work in poor countries, we believe that the best way is to create inclusive attitudes instead of creating specialized services. Inclusive education through mainstream schools and also with adaptive services for education. Inclusive health services, employment policies, inclusive social welfare.

    It may be cheaper, more efficient, and a contribution to change, but it needs money. We mustn't say all the time that inclusion is the way to make cheaper programmes and economy. That isn't true. We also need to fight because it's an issue of human rights, it's not an issue of cost.

    So we have to start, in my experience, at the grass root level, with good examples to show that change is possible, and that everyone has a place to change in society, in their community. And also we have to promote the Convention at the legal level, because it's a human rights issue which is unconditional and is available for anyone with any kind of difference, because it belongs to human beings.

    And altogether, GPO's, UN agencies, states, services of any kind, we all have to learn to work together. This is my message. Altogether we can win, if we can join our efforts and differences. Thank you.

  • Therese Agossou

    Thank you very much, Mr. Boivin. I will give the floor to Diane Richler, who is President of Inclusion International.

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Next Steps: NGO's Perspectives: Inclusion International

  • Diane Richler

    Thank you very much. You've heard my voice a lot over the last few days. So, I'm going to try to focus very specifically on some next steps that we would recommend, and focus on three targets; on recommendations for the Montreal Collaborating Centre, recommendations for WHO, and recommendations for civil society representatives who are here.

    First of all, for the Montreal Collaborating Centre, I certainly want to repeat and echo the other comments that have been made to congratulate the group for their leadership in bringing us together, and for bringing issues affecting people with intellectual disabilities to the fore, and for their openness in reaching out to so many people around the world to contribute to this process.

    I have to offer a public apology which I offered privately before, which is that I know that our organization did not contribute as much as we could have to the Atlas. We were invited to participate, I'm sure that there were many others also who were invited to participate, and just because of competing priorities, we didn't take the time. I think that the fact that now the Atlas is a reality and has been published, that there now will be a much better response to the Atlas Mark 2, as Trevor referred to it.

    And in thinking of next steps, one of the recommendations that I would like to make is that in the future, the Atlas focus on some specific benchmarks to be able to monitor change. And I think that we have a couple of frameworks that could be helpful in offering areas to be monitored. First of all, there are the Millennium Development Goals, and I know that at least three of the specific Millennium Development Goals touch upon health issues relating to child and infant mortality, relating to the elimination of HIV and AIDS and other communicable diseases, and relating to maternal and child health.

    And I think that in each of those, there are some disability specific issues that could be looked at and could be monitored over time so that we can see progress and draw to the world's attention the impact that efforts in those areas are having, or are not having, in terms of people with disabilities. So, for example, we have some preliminary data suggesting that the infant mortality rates for children with disabilities are much higher than for other children, and not because of the nature of the disability. It's not that these children are born sick, it's because they don't get the same attention as other children when they're born.

    So, what's happening in that area? What's happening in the incidence and prevalence of HIV and AIDS and treatment? We know that in Africa, for example, malaria and other diseases are huge causes of intellectual disabilities. How is that being monitored and what changes are being made? So, Atlas Mark 2 could start to focus on those issues.

    And as well, the new UN Convention opens up a new area, one which is highlighted in the Atlas, and that is the number of people in congregate living facilities. There are a number of items in the Convention that touch on that, and each of them could be identified as an area for measuring what's happening now and charting progress over time. So, those would be our recommendations for the Collaborating Centre.

    For WHO as a whole, first of all, I think it's important to remember that WHO is part of the United Nations family, and as such, should be taking some steps to reflect on what the adoption of the UN Convention means for WHO. And essentially, what the Convention does is call for a new paradigm in disability, in thinking about disability as a cross-cutting issue that touches everything. To my knowledge, WHO has not yet instituted a process of looking at what the Convention means to WHO as an organization and to its regional entities. How should that process be started, what can happen? I think that's really important, but I think that there are a number of issues that we've touched on over the last few days that would be addressed if a process were started within WHO to look at the implications of the Convention.

    And certainly following up on some of the discussions from this morning, the whole question of how there is a focus on disability as a whole in WHO, and on intellectual disability in particular, could be addressed within that context, which I think would give it a proper framework, as opposed to simply looking at intellectual disability as a silo issue within everything that WHO has to take on.

    And then, since I want to be fair in suggesting that civil society also has a responsibility, I think that we have an opportunity based on what's been offered to us this week to work with WHO and with the Collaborating Centre in Montreal, and a specific recommendation that I would have, based on the discussions of this week, is that we should undertake to change the terminology. There is no reason for us to wait for someone else to take it on. If every single organization here this week commits to take action both by writing to the WHO directly, as well as communicating with our governments, saying this is no longer acceptable, I think that we can become a force for change.

    And so I will commit Inclusion International to taking a step in that direction. I would invite all other groups to join with us in doing that, and if we can start to keep in touch with each other, and let each other know of the progress that we're making, who we're contacting, what kind of reaction that we're having, I think that we can start to build enough momentum so that when we meet again, we won't have a slash after the first two lines. Thank you very much.

  • Therese Agossou

    Thank you for your inputs and your recommendations. Now I will ask Mr. Lennon to take the floor and to make his presentation.

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Next Steps: NGO's Perspectives: L'Arche International

  • Patrick Lennon

    I thought of a story when Dr. Singh was speaking, and I couldn't help but be laughing to myself. I like stories. My friend Susan attended a conference for people with Down syndrome in Vancouver a few years ago. It was a weekend conference, and it was the first time that she attended a conference on her own. She took the bus to the conference and was there all day, then came home. And on the Sunday afternoon when it was through, she came home and was welcomed by everybody in her home, and they sat down and had some tea and cookies. And she said “Well, this was a really good conference for me. I've just got something that nobody else has. None of you has what I have. I have an extra croissant.” And I thought that really summed it up. For her, it was the relationship of the weekend. And I was thinking about her and all the people I'm connected with. There were some road signs that have come to mind and I'd like to share those road signs with you.

    The first road sign, or billboard, would read “Relationships are key”. When we enter into a relationship with someone, everything changes. What relationship does is that is offers the possibility for transformation. And this is what we've been talking about this weekend, this is what this convention is about, the Convention on Intellectual Disabilities, it's about transformation.

    I was struck by what Trevor said this morning. He said that when it comes to rights, people can be forced to comply but not to care. I think our role in society is to offer ways that people can continue to learn how to care. I'm thinking particularly in relationships with governments that can end up being quite adversarial. But if there is a relationship and if there is a person with an intellectual disability that is meeting with the government, along with other people, or there is a group of people, the meeting is going to change. And it's possible, then, for us to meet each other as human beings.

    Relationship is everything, it's the key, and I believe that it's out of relationship that the transformation takes place. It's not about transforming society. That's too huge. It's about transforming ourselves, allowing ourselves to be transformed to be agents in the transformation of people that we meet.

    The second billboard that I would like to hold up is the need to partnership. That we need to be in partnership, we need to be in relationship with each other. It's absolutely imperative for two reasons. And again, Trevor touched on both of those this morning. The first is that the world is experiencing this wave of neo-liberal governments. I read a while ago on a study of the economy of Central America in the 1970's, and this author said that from their point of view, a definition of fascism is that there was more concern for material things than for people. I believe we have a responsibility to be a united voice to remind our governments that they're first and foremost about people, and not about profit or making the environment in such a way that multi-national corporations can make huge profits on the back of people who are vulnerable.

    The other point that was made this morning, and the reason why I believe that we need to work in partnership, is because of the environment. Neo-liberal governments operate from fear, they generate fear, we don't operate from abundance, we operate from scarcity. And we know for sure that there is a scarcity that will happen. Particularly in water. In renewable resources. And unless we're working together, it's going to be the vulnerable people that we support that are going to be the first casualties. It's imperative that we partnership together, and if L'Arche International has been slow in recognizing our need to work in partnership, I leave this meeting convinced that this is what we need to do.

    And the third billboard that I'd like to have on the highway is “Disability is a way of life”. It's there for all of us. There isn't anybody who is especially disabled. All of us are disabled, and at times in our lives, we all are going to have special needs. Some people just have an extension of special needs, and over a certain period of time, or over a longer time, they have those needs. But each one of us here is going to be at a time in their life, and you may be there now, where we have special needs.

    Disability is part of the human condition, and when we can begin to see ourselves as part of this, it changes the landscape. We're not talking about IDs, we're speaking about people. And I have just the bottom of this little brochure, some family photos of my brothers and sisters around the world. These are my people, and we're bound together, and I'm really grateful for that opportunity that was given to me so many years ago to be able to align my life with this group of people.

    I want to thank the conference planners for giving L'Arche International an opportunity to come and to share in this meeting, and for the opportunity to be able to speak twice. Quite frankly, I was really quite overwhelmed. I was coming, thinking that I could just participate in receiving and not so much giving. This has been quite a wonderful experience. Thank you.

  • Therese Agossou

    Thank you, Mr. Lennon. I will give the floor to Mrs. Bauer, secretary of Board of Directors, of Mental Disability Rights International.

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Next Steps: NGO's Perspectives: Mental Disability Rights International

  • Elizabeth Bauer

    I am so happy to be here and have a chance to talk with you again, and to thank the organizers of this meeting, the Collaborative, the World Health Organization, our gracious Thai hosts who have been so marvellous all the way through.

    This has been an excellent learning experience, and I think my colleagues have spoken to that, as well. We've travelled an interesting path these three last days, and focused on the Way Forward today, and we've got some new resources in our bags. We've got the Atlas that has some data. We all know we need more data, but we now have a starting point. We have new relationships and new friendships and new networks that we've made together, all of which will sustain us as we take the next steps forward. Our job on this path is to close those gaps between what is and what we want the world to be for all people, and particularly for people with intellectual disabilities and their families, but their needs are not unique. And therefore we need to recognize the human rights of all people.

    I have to tell you the phrase the Way Forward has unique meaning for me. I'm going to tie my daily experience with the Way Forward to today's meeting and to our action item from Mental Disability Rights International.

    I come from Detroit, Michigan, which is the home of the auto industry in America, which has fallen on hard times. The company that has fallen the hardest is the Ford Motor Company. It's a 100 year old motor company, and they are trying to regain power and position in the automobile manufacturing world. They call their plan “The Way Forward.” So every day in the newspaper, I see the Way Forward, and where we're going on the Way Forward. Well, you know what I am thinking? The Way Forward for us is exactly the same thing, it's a movement to gain power and position, power in society and position so that we're not the last individuals thought of when plans are made by governments and intergovernmental organizations. So we can be the first people thought of and we can be the leader in our field.

    From the perspective of Mental Disability Rights International, which is a non-governmental organization committed to promoting human rights and full participation in society of children and adults with mental disability, we see this new partnership that we are forming here, between the World Health Organization, between our various non-governmental organizations and governments, as essential to our progress on the Way Forward.

    And there is some thing else. We need to model what we advocate, and you may or may not know that of the Mental Disability Rights International staff, the majority are people who have been labelled with some kind of mental disability at some time in their life, so they have experienced the prejudice and discrimination that occurs when you have a label. Almost all of the members of the Board of Directors are either people who have experienced a label or are immediate family members. I think sometimes people see us as a legal organization, and don't see the humanity and personal experience that drives us to fulfill our mission.

    MDRI has enjoyed the support of the World Health Organization for many years. WHO commissioned a report that was written some years ago by MDRI’s Executive Director, Eric Rosenthal, and Board President, Clarence Sundrum, on the role of international human rights in the in domestic mental health legislation. That document was the foundation for yet another document that guided a lot of the discussion in framing the International Convention on the Rights of Persons with Disabilities. So, we're very grateful for that partnership and support, and hope to continue to work collaboratively with everyone in advancing human rights.

    I looked at the Way Forward in the Atlas, and there are particular items that really look like MDRI's business. One is the adoption of a rights-based approach to disability. That is the approach that we are specialized in using. Different organizations have different purposes and missions, but that happens to be ours. MDRI is advocating a high priority for our issues with governments and civil society. MDRI provides technical assistance to governments, United Nations agencies, international donors, and community members in terms of policies, programmes, planning and operational research.

    For example, right now we're advising the President of Kosovo on ways to close the psychiatric hospital Shtime and create community based services. We have an initiative for inclusion on the ground in Kosovo and are working daily with the leadership in that country toward downsizing institutional facilities and increasing community based service and supports. That action item in the Way Forward on page 79 is very much part of our work, and what we will be committed to doing more of as we go forward.

    The world is big and the challenge is huge, but there are some things that all of us can do.

    The International Conventions on Civil and Political Rights on Economic, Social, and Cultural Rights, the Convention on the Rights of the Child, and the foundational Universal Declaration of Human Rights, are conventions that are in force right now. When we see abuses of those rights, discrimination, whatever, we ground our findings on those conventions, and we hold governments accountable for the rights of individuals and to provide all of the programmes and services that those conventions promise to them.

    I strongly encourage you to look at some of the MDRI reports (www.mdri.org) to see how we have used the existing conventions to advocate the rights of individuals. I suggest when you read a report, rather than worry about the conditions of the subject country, attend to the description of the condition and the relevant international law. If you see a description of a situation that you have observed in your own country, you can apply the same legal rationale and make your case to the authorities that the condition you have observed is a violation of the human rights of the individual or individuals.

    I strongly encourage you to do that, because if we don't use the tools that we have, and obviously when we get the new Convention and the optional protocol, we will have an even better tool, but if we don't use these tools these lose effectiveness. They're just like muscles, you know. If you don't use your muscles, they wither and lose strength. But if you do use them, they build and become more powerful. Like the Ford Motor Company, the Way Forward for people with intellectual disabilities or any other condition is all about gaining position and gaining power in your place.

    I would like to end with a call to action. We need to make clear to our governments that this Convention and the optional protocols that we are advocating they sign are nothing new. We need to make clear that we're not asking for new rights. The rights are already guaranteed in other documents. The Convention on the Rights of Persons with Disabilities makes explicit that these rights apply to people with disabilities. It's a helping document. It informs and advises governments in terms of their responsibilities, and nothing can be more helpful than to be clear about what they're supposed to be accountable for. So, they shouldn't be reluctant to sign. In your advocacy for your country to sign, that is if you're in a country that has not yet signed, like mine, then it's really important I think to help people see that they're doing the right thing, and they're doing the reasonable thing. They are not being asked to do something extraordinary that has a political downside.

    I want to say something about our work together, and about the kinds of power we already have even without the Convention. And that is the power of knowledge. Knowledge is power. And the more you know about the situation in your country, the more powerful you will be. Start with the baseline data in the Atlas. Start with the provisions of the Conventions already in force. Start with a complete understanding of the Convention on the Rights of Persons with Disabilities and its history. That kind of knowledge will give you power. You will know more than other people know. And that makes a difference. Unity is power. The people in the disability community for too long have tried to get one up on each other, rather than pulling together and having a unified message. Unity is power. Come together.

    Craft a simple message. Get some road signs. The previous speaker, Mr. Lennon, talked about billboards .His billboards were “Relationship,” “Partnership,” and “Disability is a Way of Life.” Road signs point the Way Forward. They are a reminder and guide to where you're going. Be persistent and stick with your message. You will be astounded at the progress you can make with a simple message, repeated often.

    Finally, be a resource to your policy makers. You know more about your situation than anybody else does. You are experts. Family members are experts. Individuals who have been labelled with intellectual disabilities are experts in their lives. If you educate your policy makers to understand this, and then encourage them to do the right thing, and when they do, give them all the credit, you will be amazed how far forward you and we will go.

    MDRI will continue to teach these advocacy skills as we work to hold governments accountable through our investigations and reports and recommendations. I think the information that we've received here from one another in Bangkok and the connections that we have made all will be important and will guide and support us on our Way Forward. Thank you and I'm looking forward to seeing you on the way.

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  • Therese Agossou

    Now it is the turn of Dr. Luis Salvador-Carulla. He is the Chair of the Section on Psychiatry, of the World Psychiatric Association.

Next Steps: NGO's Perspectives: World Psychiatric Association

  • Dr. Luis Salvador-Carulla

    Perceptions and views on disability may have many facets apart from label and stigma. It may be worth to remember that probably the most positive character in the history was a disabled person: Harpo Marx. On the other hand label and stigma may also tan professions and organisations nearly as much as persons. A clear example of that is psychiatry. The most wicket character in cinema was Annibal Lechter, who, apart from a multiple murderer and a cannibal was a psychiatrist. Therefore carers and professionals may also suffer from label and stigma. They may be undervalued by colleagues working on more fashionable areas at their professions, they may feel under stress, burden and burn out. Psychiatrists devoted to intellectual disabilities have a strong vocational attachment to the persons they treat and some times it is hard to listen to the critics made by a number of users and organisations. It is important to reckon that we: users, families and carers are all in the same boat and our main objective is to promote and implement any strategy aimed at improving autonomy, self determination and quality of life of people with ID. The Section of Psychiatry of Intellectual Disability advocates for the proper rights, the proper services, and the proper inclusion in society of persons with ID.

    In this meeting, a major organization, the World Health Organization, is joining us in this boat. This is a major step in the recognition of the unmet needs of this population group which has been invisible in health policy for decades. It is important to acknowledge the people who are helping us from the World Health Organization, and I do hope that they feel confident and reassured as they are working in their own organisation to get things done. Having them here in our forum, working for intellectual disability, as it is named in the Atlas, is a major feat. We have to be aware of how important it is that WHO has arrived so far in this road, and that we are probably at the stage of making a major leap forward in the recognition of ID as a major health issue.

    What does the Atlas tell us about psychiatry? According to the Atlas the first health professional in contact with the person with intellectual disability is the psychiatrist. On the other hand, it also shows that the level of training of psychiatrists in the area of disability is quite low. Just a bit more than half of psychiatrists get any training in intellectual disability, and this is a very optimistic rate. So it is necessary to increase the training, the awareness and the knowledge of ID to psychiatrist.

    The section of psychiatry of intellectual disability is in the process of changing the name in our large organization, we developed ABC guidelines on the problem of intellectual disability in 2001, and guidelines on autism in 2002. We worked on the naming and the concept, and we explained to our colleagues why it was so important so change the name to intellectual disability.

    We are developing treatment guidelines for intellectual disabilities, we patronise national initiatives in the area, and we are trying to put together training programmes in this area within our association. This is related to the person centered approach which has been recently promoted by the World Psychiatric Association. It incorporates an idiographic approach to the data gathering and the diagnosis, a better understanding of the relationship between the health condition, the disability and functioning, the context, and the environmental and the personal factors, as well as the quality of life. The idiographic approach requires gathering information on the person that exceeds mere clinical symptoms and signs. It focuses on other life aspects, the life cycle, as well as the positive health and aspects related to health promotion and healthy life styles.

    The World Psychiatric Association is interested in merging the best research evidence with clinical experience and with patient values. The integrative health care, takes into account many factors ranging from the genetics to psychosocial and economical factors and it follows a recovery perspective.

    The ID section at the World Psychiatric Association is committed to increase the awareness and to make ID visible to our colleagues In this context the publication of the Atlas is a cornerstone to facilitate training, and to promote appropriateness of care and rights in the persons with intellectual disability. Intellectual disability is not a marginal topic, but the key example to develop a model for citizen-centred psychiatry in the future.

    As other sailors in the boat of ID, please do not see ID psychiatrists as enemies. We may have different views, about labelling classification, care and many other things, but we are fighting the same problems and we work for the same purpose. We are not fighting them with bullets or cannons, but we are fighting with ideas and values, and now we have new colleagues in this fight. I would like to recommend you to enhance and help WHO official to keep on working in the area. We will have the name MR changed by WHO in the next future, for sure. Thank you.

  • Therese Agossou

    Thank you Dr. Salvador-Carulla.

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Questions and comments

  • Therese Agossou

    Now we can have one or two questions or comments, because the time is already advanced.

  • Comment

    Excuse me. Because I would like to address two specific problems that were just mentioned, but it seems to me that it should be one of the recommendations to WHO. The first problem was brought up on the first day, and there was a question on how to help people with intellectual disability, prepare for problems such as death and dying. And nobody undertook this problem, and in my opinion it is extremely important to prepare people with intellectual disability for their own disease problems with terminal illness, and the problems with the death of their caretakers.

    And why I mention this problem, especially now, is because there were a lot of words said on the double diagnoses, ID and psychiatric diseases, and nobody has mentioned that a lot of psychiatric problems of people with ID could be caused by their grief, which was not understood by their carers. And when some of us are sad, are unhappy, are anxious, the normal question is why, what has happened in your life? But nobody asks these questions to people with ID when they are grieving or present an aggressive behaviour, or when they behave in an unexpected way. So I think that for psychiatrists, it is extremely important to have in mind this important issue.

    And the other point I would like to raise is, in my opinion, my understanding, we didn't pay enough attention to early intervention and support for people with ID. In a press release, it was a question from journalists. What are the preventive measures to help solve the problem with ID? And in my opinion, we didn't give the good answer for that, and we all know, psychologists know, how important early intervention is, and not only in the period of early childhood, but all along the lifespan. Without support, without stimulation, without intervention, people with ID would deteriorate, and it is a rule.

    I remember hearing a statement that “without intervention, the IQ of children with ID would drop about 20 points”. I know that not all of us like IQ measures, but it seems to me that for non-professionals, it is a very strong message. Without early intervention, without stimulation, without support, people with ID will deteriorate. And there’s no possibility of it being otherwise. So, in my opinion, I would like to give this message and to support the idea of early intervention.

  • Therese Agossou

    Thank you.

  • Luis Salvador-Carulla:

    As you say, the psychiatric diagnosis of intellectual disability is the most difficult area of diagnosis in all psychiatry, and in many countries we do not have any training in how to diagnose, care and treat people with intellectual disabilities.

    So the problem is that many of you are in contact with psychiatrists who have no training in that, or psychologists that have no training in that. Of course, one of the major issues is how to improve the education if you don't know what the problem is, and who are the people, you have a direct contact with the people during your training, how are you going to treat it? How are you going to know the difference between a behaviour problem due to a teeth problem or due to a depression?

  • Therese Agossou

    Yes, if you allow me, we have to close the session, because some people have to take their flights. I apologize for that. I want to thank all of you for your participation.

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