The Way Forward towards Closing the Gaps

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Keynote Speech

• Trevor Parmenter, Professor of Developmental Disability, Faculty of Medicine, University of Sydney (Australia)
  The Way Forward Towards Closing the Gaps

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Chairperson

• Diane Richler, President, Inclusion International

Introduction

• Diane Richler

  Good morning, everybody. I hope that all of the other regions had as productive and fruitful discussions as our regional group did, and that you've had a good start to your morning.

  Today is the day for coming up with conclusions, and for tying together all of the threads of what we've been hearing and talking about over the last couple of days. We’re very lucky to have to start out our discussions this morning, Trevor Parmenter, who is going to be starting us on the Way Forward.

  I'm sure that most of you have already looked through your programme and so you know about Trevor's various appointments. He's the Foundation Professor of Developmental Disability in the Faculty of Medicine at the University of Sydney, and Director of the Centre for Developmental Disability Studies. He's probably best known internationally as a past President of IASSID, and personally, I can say that he's really been an inspiration, as someone who's been a leader of a global organization, and has been able to make a real change and make a real difference. I think that he really helped move the organization into the twenty-first century. He has been recognized by his own country in Australia with the Order of Australia, and we're very pleased that he can be here today to start off our discussions. Trevor, over to you.

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• Trevor Parmenter

  My school boy French goes to “merci beaucoup”, but I will finish the address in Latin. It's indeed an honour and a privilege to be part of this august gathering, sponsored by the World Health Organization. It's doubly pleasing that we're in Thailand, because many of us come from countries that have been colonized by our European brothers and sisters over the centuries, and this is one country which can claim that it has not been colonized by Europeans. I would like to send our greetings to His Majesty, the King of Thailand, who just returned home from hospital, and we wish him well. He is a very revered person, and deeply honoured by our Thai brethren.

  I'm going to address some of the challenges that the topic presents us, particularly what is intellectual disability. I'm going to look at some of the historical backgrounds that look at what I propose to be six ways forward. Some of which will address page 74 of the Atlas, that our friend Dr. Harnois outlined in his introductory remarks two days ago. Then, at the forum section, with Diane's help, we may address some of those challenges that are on page 74, and to help us I've made three Powerpoint slides of the shortcomings and issues we need to address for the future.

  As Diane said, I have had the privilege of being the President of the International Association for Scientific Study of Intellectual Disabilities (IASSID). Like Inclusion International, we too went through rigorous name changes. “Mental deficiency” was once in our nomenclature, as was, “mentally handicapped” for Inclusion International. It's a truism that no matter what term we use to refer to people with intellectual disabilities, it will become a term of stigma. And I want to make a plea to my colleagues in this part of the world, because what I've noticed from my many visits to South-East Asia is that we're now referring to people as ““the ID's””, In fact I have a campaign against journal editors who actually shorten intellectual disability in the journal articles to ID, so please let's not refer to”the ID's”, because we used to refer to these people as “the cretins”, “the idiots”, “the morons”, and now “the ID's”. So please, those of us who speak English, let us desist.

  You've probably heard the story of the person who was lost and asked his way to a particular town., I'll put it into an Australian context. A stranger was lost, and he asked a farmer in the Outback of Australia for the directions to Kalgoolie, which is in the middle of a desert in Australia. The farmer chewing on a stalk of wheat looked at him and said “I think I can direct you to Kalgoolie, but I wouldn't start from here.” Now, I'm not for a moment suggesting that metaphor applies to our document the Atlas, because I do believe that we need to start from here.

  Just a final comment of introduction to my dear friends from the Centre that was responsible for the hard work. Probably seven or eight years ago, Dr. Saxena suggested that IASSID might be the organization which could put together the map, and he's a very persistant man. In fact, I have this picture of Shekhar being Atlas, holding up the world. That's the image I have of him. Disappointingly, IASSID was in poor financial straits, and we were not able to do this. I somewhat sadly thought the whole idea had died. But no, our friends from the French speaking part of Canada picked up the ball and ran with it, and here we have this wonderful document.

  What is intellectual disability?

  I think we should address, first of all, just what is intellectual disability. Allan and Anne Clarke are now quite an elderly couple ,but they have contributed an immense amount to our scientific discoveries in the area of intellectual disability. They said in 1958 that “Mental deficiency”, and that was the common term then, “is a social and administrative, rather than a scientific concept, varying in different countries, and within different countries at different times”. I think that is a very profound statement which is equally still true in 2007.

  I ask the question, “Are the current definitions and classification systems appropriate?” Different organizations have promulgated different definitions and different classification systems. We heard from Ruth Luckasson during the course of our meeting about the contributions made by what was formerly known as AAMR to the classification system, particularly looking at classification along the lines of supports. But that system is still being criticized, particularly by some of our colleagues from the discipline of psychology.

  We should also look to what scientists are contributing to the definition in the general area of intelligence How are they defining intelligence and asking the questions “What is intelligence?” “What is intelligent behaviour?” Here I am reminded of the work of the American psychologist Sternberg. People are asking the question, “Are the notions of adaptive behaviour and social competence more useful concepts than Intelligence Quotient (IQ)?”. And as our colleague from Spain, Dr. Luis Salvador-Carulla asked in one of the workshops yesterday, “Is it a deficit? Is it a disability? Is it a disorder? And do we need a meta-syndromic approach, as in the area of dementia?” I thought that was a very excellent suggestion for us to explore.

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  Where have we come from in supporting people with an intellectual disability?

  I'd like to address where I believe we have come from. The truism is that if we do not learn from history, we surely will repeat it. In the United States in the early 1960s, primarily as a result of having a sister with intellectual disability, John Kennedy, the President of the United States, set up the President's Panel on Mental Retardation. I recall in one of the workshops that I was in yesterday, the suggestion that we should identify important people who do have relatives with an intellectual disability, particularly those in powerful positions, in government for instance; because surely they can become our colleagues, and often push the barriers where those of us from more humble backgrounds have little success.

  Then in 1964, Harvey Stevens became the initial President of the International Association for the Study of Mental Deficiency, as it was then known, He was also the President of the American Association on Mental Deficiency. He was one of the first in the literature that I have been able to discover, to talk about human rights as early as 1964. Persons with intellectual disabilities were viewed, not as second class citizens, but as people who possessed no citizenship. In 1971, there was the UN Declaration of General and Specific Rights of the Mentally Retarded, followed four years later by the UN Declaration on the Rights of Disabled People.

  As Isaac Newton said “We often stand on the shoulders of giants”. I'm just, very quickly, going to mention five people who have made a significant contribution, particularly in the sixties, seventies, and beyond. The first was Niels Bank-Mikkelsen from Denmark, the first man to coin the term “normalization”, followed by a Swedish man Bengt Nirje, who took the term, and then enunciated key principles relating to patterns of life.. In my analysis of history, I think I would refer to him as “the father of the normalization principle.”

  Wolf Wolfensberg picked up the Nordic concept and really popularized it throughout much of the United States, Canada, and Australia,. And last, but not least, the work of Gunnar and Rosemary Dybwad, again two people who have travelled the world, promulgating the concept of human rights. And there we have pictures of Bengt Nirje and Wolf Wolfensberg. Together with Terry Dolan, the then president of IASSID, we honoured Gunnar and Bengt Nirje with special awards from our Association at our World Congress in Helsinki in 1996.

  Of course, we have come from, and we still are going through the processes of de-institutionalization. One of the challenges that's on page 74 of the Atlas, is that we still have several countries, including my own, that still have considerable numbers of people in congregate care settings. In fact, in some countries, the numbers are increasing, not decreasing; one of which is the Netherlands. I read recently where Taiwan is also increasing the numbers of people in congregate care settings, although they do have a policy of de-institutionalization. But given the de-institutionalization movement, I ask the question: Have we really achieved community inclusion, at school, in community living, and at work? There's evidence right across the world, despite the conventions, and declarations, and calls for school inclusion, we still haven't achieved the goal of true community inclusion. That challenge is still very much before us. I believe that we need more work, on research to look at the processes that will help us achieve inclusion.

  Future Threats

  I shall now address some of the threats that currently exist around the world, to the realization of human rights. One of the key factors that I believe threatens the true implementation of human rights in today's world can be traced to the negative effects of the globalization phenomenon. Because the globalization phenomenon is essentially looking at economic outcomes, we have all become economic units rather than citizens of the world.

  I believe there are at least three issues that are contributing to this threat: the concepts of utilitarian individualism, and meritocracy, and the loss of community. We've truly lost the concept of community. Some people might say, did we ever have it? Is it a dream; is it something that we older people think we grew up with? Well, I grew up in a very isolated rural area in Austria, and I can remember having a true community where I grew up in a farming community.

  A related issue and the one that I believe is really driving the individualism issue, is neo-liberal economic policies, which lead to the commodification of people with intellectual disabilities. They become economic units, they lose their citizenship, and they lose their identity. Related to that is the issue of genetic engineering, and the design-a-baby phenomenon. What is in reality driving the promises of genetic engineering, the promises that are given to help allay, or to modify, to ameliorate many of the diseases that face many people in the world? Lurking behind the promises are large pharmaceutical companies that see the possibilities of making immense profits from their discoveries. Discoveries that will in most cases benefit richer populations.

  But it's more insidious than that. We talked throughout the course of the last two days about prevention, and some of the issues surrounding prevention of intellectual disability. We do have the technology to design babies. We have it in the animal world, and it's a small leap to doing it in the human world. And within a few decades, we could start engineering babies' hair colour, complexions, and even IQ. Who will have access to that technology? Only the very rich people, who can afford the new technologies.

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  The rejection of people who are different

  Behind all of this are the negative community attitudes towards people who are different. And it's not just because they are different in terms of their abilities, but different in terms of their skin colour, different in terms of their religion, and race, ability and their sexual preferences. It is not that long ago when many countries had laws sanctioning the sterilisation of people who might weaken the gene pool.

  One of the tasks that I have at home, and I'm sure that others of you have similar tasks for your countries, is to write a long psychological report for families who want to migrate to my country, but they happen to have a child with a disability, particularly a disability that's quite obvious, such as Down syndrome. Our country does not welcome people with Down syndrome from another country, the reason being the potential cost to the community in supporting the person throughout their life time.

  Our recent research showed that the eugenics movement is still alive and well in the thoughts of the general public. We compared the attitudes of students, many of whom were doing disability courses, people who were carers, and the general community to people with an intellectual disability. Both the students and the carers had positive attitudes, but the responses from the general community indicated that intellectual disability is something that should be prevented at all costs.

  I now want to digress to share with you a piece that I wrote for a conference in Sydney last year, a Conference of Carers.

  I'm referring to the way that governments have, almost in a sense, taken over the agenda, and have almost bureaucratized values; a term coined by a famous American writer, Burton Blatt, whose work I respect deeply. Burton spoke very strongly about the concept of bureaucratization of values, where good values, as soon as they're promulgated, become bureaucratized.

  I've suggested that welfare agencies are increasingly becoming a tool of government, especially as governments are moving out of direct service delivery. Some of these comments pertain essentially to Australia, but if your country has a similar situation, “if the cap fits, wear it”. I believe there are currently two almost antagonistic movements which provide the context in which support for people with a disability are provided. First, the current mantra of neo-liberal economic policy continues to embrace the Reagan-Thatcher trickle-down theory which asserted that a strong vigorous economy was the best way to ensure that the most disadvantaged in society would enjoy a decent life. Explicit in this theory is the emphasis upon utilitarian individualism, wherein people are judged in terms of their utility to society.

  The other movement is the need to place greater emphasis on the building of community capacity and social capital. Implicit in this approach is the call for less government involvement, and the privatization of services and utilities formerly delivered by governments. The message to families is that they need to do more themselves in providing for their child with a disability. The message to communities is that they should be more responsive to the needs of those who are disadvantaged. However, government support for capacity building projects is often limited to pilot projects that lack sustainability. Paradoxically, the competitive pressures of the corporate economy have weakened self help networks, and the concept of reciprocal relationships.

  I believe that a number of phenomenon emerged from the utilitarian individualistic philosophy. People with a disability are seen as commodities to be serviced, and are viewed as an economic burden on society. Their deficits, their defects are emphasized, and their worth is judged by their contribution to society. Being objects of charity, they are patronized, and at worst, they are perceived as dehumanized others.

  A solution to capturing the promises of the 1980's is to foster more urgently the empowerment and self determination of people with disabilities and their families. We need to build new alliances between people with disabilities, government, and service agencies. For too long, the power base has been with government, and, to a lesser extent, with the welfare agencies that have become, I believe, de facto instruments of government policy. The disability industry is in desperate need of a complete overhaul, starting with putting the person with the disability, and where relevant, his or her family, at the centre of the equation. We need to look for collaborative decision-making mechanisms that will ensure a more equitable distribution of current resources. But there is an inevitable need, also, for increased resources, that should be channelled more directly to those who need support. It may be that direct payments, rather than the building of elaborate infra-structures, may be the way forward.

  I noticed in this morning's local press, a news report that could have come out of a Sydney paper. It referred to politicians and to popularist policies. Our two major parties at the moment, contending for the privilege of being the next government of Australia, both are promising upwards of 38 billion dollars in tax breaks, the bulk of the tax breaks going to rich people. And I would be willing to make a small wager that in the US elections next year, there will be similar promises of tax breaks, which will also go the rich people of the United States. I'm sure that it has happened in the UK, and it's probably going to happen in Canada, and across the world. In my country, we are resource rich, we have lots of coal, which of course is affecting the environment; and we have lots of iron ore. Our wealth is being dug out of the ground and we're distributing it to people who will not be here tomorrow. We're not distributing it to build the infra-structures that are needed to help less privileged people and future generations. Our greed is for material benefits of the here and now.

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  Gaps in the system

  So where are the gaps in our system that we need to look at and look for, to see if we can do some remedial work? As the Atlas points out, intellectual disability has a very low priority in government policy across the world. There's an enormous gap between needs and the resource allocation. Personalized models of support, in some countries are becoming the norm, at least at the policy level. Whether they are being applied is another question, but at least we're talking about putting the person at the centre.

  There's enormous lack of accountability at the structural, process, outputs, and outcomes levels, and they are some of the benchmarks that the World Health Organization are using. We need indigenous research, with partnerships with people with intellectual disabilities and their families; research that is peculiar to each country, to each country's needs. We cannot migrate research findings from one country to another very easily, particularly from the well developed countries to the low and middle income countries. The research needs to be done locally, for local conditions and local circumstances.

  Part of my role as a professor is to question, and I'm questioning through the mouths of others, the rights discourse, I'm just pointing to some of the limitations that some authors have suggested. I choose two. Hans Reinders from the Netherlands, who is an ethicist and a theologian, and my late departed colleague and friend, Bengt Nirje. I know they are not opposing the concept of rights, it's just that they have a word of caution. Hans says: “The moral language of rights is neither sufficient nor necessary to ground the moral responsibility for people with a disability”. He goes on to say that “Without people who have sufficient moral character to care, rights can do little to sustain the mentally disabled and their families. People can be forced to comply, but they cannot be forced to care.”

  Bengt Nirje said “Laws and legislative work cannot provide total answers to problem-solving and proper action with regard to the realization of human rights. These can only come into existence in the full cultural and human context”. I think all of us realize very well, that just because a country signs to the Conventions and the Declarations and the different protocols, there's no real guarantee that the communities that they represent as a whole will support the very key principles. What I would add to these two gentlemen's comments is that we must work actively within our countries to promulgate the human rights issues, explaining it carefully and sensitively, because we have to win the hearts and minds of our fellow countrymen. We cannot do that didactically, we cannot preach from pulpits, we must win hearts and minds, and I think that's a challenge that the human rights conventions and declarations give to each of us as citizens of our respective countries. It's not something that Prime Ministers and Presidents can do, it's up to you and me to do it.

  Challenges

  I've just chosen a small number of challenges that we face. We're competing for resources in the world. Many of us live in rich countries, but many of us live in poor countries that have hidden riches, and where riches are not equally distributed. But I think the big competitor is going to be the competition for resources by the needs of the general ageing population. The world demographics are showing that a disproportionate number of people in the world, in the next 10, 20, 30 years, are going to be people in their 70's, 80's, 90's and beyond. If my country, we're going to have a shrinking population earning income to keep those older people to the life they've been accustomed through superannuation and pensions. the ageing population will also become increasingly disabled.

  Another challenge is the early aging of people with intellectual disabilities. Good health and good nutrition, have brought about a revolution in the longevity of people with an intellectual disability. But with that extra longevity, people with an intellectual disability will contract diseases which formerly would not occur because the persons would not be alive. And here I refer specifically to people with Down syndrome, who have the possibility of early onset of dementia.

  The other challenge, which I believe is equal in well developed and low income and middle income countries, is the aging of parents of people with intellectual disability. One of the blind spots I believe that we have in our current policy development is an over-concentration on the de-institutionalization principle. What that principle hides is that the bulk of people with intellectual disability have always lived at home with their parents, and only a small proportion; too large a proportion I admit, but nonetheless a small proportion; have been consigned to back wards and to congregate care living. What's happened in many countries is that resources have been poured into the de-institutionalization of people, but the needs of parents who have kept their child at home have been ignored. In my State of New South Wales, 45% of the disability budget is given to 5% of the people who have needs. And those 5% are people who are in government funded group homes, and some still living (at least 2000), in congregate care.

  There's going to be increased competition for trained and committed staff to support people with intellectual disability. We need skilled staff in employment, in community living, in education, in helping to develop relationships, and in helping to develop true leisure and recreation activities that are not mindless activities that we subject many people to. The other subject is the effects of environmental degradation, which affects all of us, but often affects people with disabilities and other people at the margin, in a more drastic way.

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  The Way Forward

  I want to proceed to six suggestions for the Way Forward. One of the most exciting developments for the World Health Organization, other than the Atlas, of course, is the effort in recent years it put in to the International Classification of Functioning Disability and Health (ICF). My challenge is for us to use it in our field of intellectual disability.

  I just have a number of slides which quickly describe some of the goals of the ICF. It provides a scientific basis for understanding the health and health-related needs of people. One of the important things about the ICF is that it's universal, it applies to all of us; it just doesn't apply to people with disabilities. It uses a common language to improve communications, and it has been translated into several languages across the world. It allows us to compare data across countries, across health care disciplines, and services.

  It attempts to bring the social and medical models of disability together. Rather than having the medical versus the social model, we have the medical and the social model sitting side by side. It's not a minority model, it's a universal model. It doesn't take a negative view, it takes a neutral approach. It doesn't rely entirely upon categorization, it's multidimensional, it doesn't patronize, it encourages equalization. It's not dehumanizing, it's humanizing. It's a universal model, where health is a basic human right. No one should be discriminated against on the basis of their health status and functioning. Most of us have some form of disablement. It's a fact of life. And functioning can be altered at the body level, the person level, and the society level. And not being a linear model, I believe it has tremendous potential for us to share a common language, particularly the issue that the Collaborating Centre in Australia has contributed to. That is the concept of participation, and the barriers and restrictions to participation, which I think are entirely relevant, most relevant, to the population that we work for, with and beside. The other strong domain is the environmental factors. Applications of the ICF cover statistics, research, clinical treatment, social policy, and educational policies.

  The second Way Forward is to put the person with the disability at the centre of the equation. Vern Hughes, a social welfare commentator in Australia, has pointed out that the current paradigm of service delivery in the welfare area may be described as supply-side service delivery. In hospitals, in welfare agencies, in psychiatric care units, in nursing home dining rooms, in day centres for people with intellectual disabilities, this paradigm still rules. Services are dispensed to disconnected and passive clients, in programmatic modules, administered by departmental silos, segmented by jurisdictions, fractured by disciplinary demarcation, and delivered by agencies that are charged with delivery, not to their consumers, but to their funders.

  As Hughes says, disability services has been supply driven, not needs driven. Consumers and families have been disempowered. There is very little evidence, in many of our high income countries, that increases in funding have led to increases in outcomes. It's a common finding in our group home work in Australia, and in studies in the UK and the US, that simply increasing staff in a group home, or in a residential home, for people with intellectual disabilities does not increase outcomes for the residents. In fact, the opposite is often the case. Lower staff numbers often lead to better interactions and better support and better independence of the person with the disability.

  There is a need for a new paradigm that recognizes consumer and family involvement in policy development. Put the person at the centre and develop social capital around the person with the disability. Build community capacity to provide formal and informal supports. The challenge for us who are working in the research world and in the service delivery world, is to work more strenuously in building informal supports, and not simply paid supports. Because paid supports come and go, and informal supports are the supports that are likely to be sustainable. But that doesn't come about easily. One cannot wave a magic wand to build those informal supports.

  Here is the new paradigm I'm suggesting- the DEMOS model which includes :

  • personalized support
  • consumer family support
  • individualized funding which is increasingly becoming the norm in some of the high income countries
  • person-centred planning
  • empowering the people with disabilities and their families
  • system-wide intermediaries between the consumer and the provider
  • long term financial asset development by families, helping families to develop assets that they can apply to their son and daughters needs, when they are no longer able to provide that support

  DEMOS has, I believe, made a very important contribution to this model. I'm sorry that most of you are not going to read it, but these notes will be up on the website for the conference. The disabled person is essentially in the middle, and each concentric circle is taking levels of support farther and farther out, right to the outer ring which is support of public attitudes and an understanding of independent living by the general community. I believe that is an excellent model. It will help drive policy and practice.

  The third Way Forward is to develop collaborative research and training to build local capacity in the middle and low income countries. By collaborative, I mean those of us in the richer countries that have a much longer history of research could mentor researchers in less developed countries., This is actually happening in this part of the world as I speak, but the need is to build the capacity of the local researchers to address local problems that they themselves have defined. In terms of the Atlas, we need to build local databases, with valid and reliable information, so that when we do Mark 2, the data may become more valid and more reliable.

  The fourth Way Forward is to develop coalitions with other advocacy groups. We are a very small population in comparison to competitors, but if we join with civil rights groups, feminist movement groups, and sexual preference groups; we will certainly develop much better alliances and much better strengths. In my country at the moment, the Greens Party is reaching out to people with disabilities, probably more strongly than either of the two major conservative and liberal parties. So we must join with stronger groups to push our case and seek allies.

  The fifth Way Forward is to apply universal design in our countries. Universal design, I believe, is not the whole answer. This principle can be applied to health services, in educational services, and community living services. We do need specialized back-up, otherwise the resources that may be earmarked for a person with a disability will be lost completely. There's a debate about whether we need Ministries of Disability in countries, or whether all the ministries should pull together and, using universal design principles, should look after all peoples in their jurisdiction. But as night follows day, we know that disadvantaged groups can often be ignored. I once worked in a high school that was given a small allowance for the slower learning students. The principal very conveniently took the few dollars that we received for the slow learning children, and put that into the general library pool. I think we eventually received one or two books.

  My sixth and final Way Forward addresses Atlas, Mark 2. We should be reporting outcomes and outputs and processes and structures that countries have put into place to meet the needs of people with an intellectual disability.. In the outcomes area, we should measure how we have impacted on the quality of life of people with intellectual disabilities and their families. There are tools that can be used to report that those data. I would strongly recommend that we consider that in the Atlas, Mark 2.

  I want to conclude with a comment by the Japanese-Canadian environmentalist, Suzuki, who visited Australia in 1991. He commented that, “… one of the major things that has gone wrong today is that governments have become so far removed from the average person, that there is no connection between them. We have to get back to communities, and gain greater autonomy to determine the future of our own community”.

  And so, dear friends, here is the Latin: “CARPE DIEM” “Seize the day”. Et bonjour, mes amis. Thank you.

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• Diane Richler

  Thank you very much Trevor, I'm going to invite you to come sit beside me and we're going to turn things over to people in the room. This is our chance to reflect on the proposals both from the Atlas itself, which, for those of you who still have it handy in your briefcases, is on page 74, dealing with the Way Forward, as well as dealing with some of the challenges that Trevor outlined in his presentation.

  And in his presentation, Trevor dealt with three major themes. What is intellectual disability? He provided us with a historical perspective of where we've come from and where we are now. And then he provided us with his own analysis of some of the issues that we need to deal with to move forward, which, in some ways overlap, and in some ways expand on what's contained in the Atlas.

  And what I would like to propose is that we divide our discussion a little bit and start with Trevor's first theme, which is something that has come up earlier this week, and that's the question of what is intellectual disability? And certainly that's an important issue, in terms of how we're moving our agenda forward, an agreement on terminology and on what our understanding is of what is the common theme that brings us together. I'm just wondering if there is anyone in the room who would like to make any comment on that point. There were a lot of people who had ideas about it before.

• Comment

  Well, this is not a well thought out idea, but it seems to me that if society defines you as disabled, retarded or whatever, then you are. Once someone else labels you, then you are disabled by that society.

• Diane Richler

  Thank you.

• Andre Blanchet

  Andre Blanchet, from Canada and the United States. First of all, hi Trevor. I would like to say that Trevor Parmenter is a very humble man. I have known him for many many years, and his humbleness has been one of his hallmarks. When he showed that slide with the leaders in the intellectual disability movement, following Bengt Nirje, and Kalgonfald, and Wolf Wolfensberger, and Gunnar and Rosemary, there should be another picture of this man from Australia, Trevor Parmenter, who has done tremendously and is one of the greatest leaders in our field, and has been for many years. So, I know, Trevor, you're a very humble man but take this compliment.

  I have other comments that I may make later, on the implementation of human rights. I think it's such a huge issue. We could have countries who have tremendous, beautiful pieces of legislation, but in fact, in reality, there's not much going on in terms of changing the reality of our friends. But that's another issue.

  In terms of the identification of people with intellectual disability, this is a very difficult issue. If we think that intellectual disability is not a disease, we have to get away from the Diagnostic and Statistical Manual III (DSM III), DSM IV, and all of these international classifications of diseases when we talk about people with intellectual disability. We have to make this point very clear. And I think one of our colleagues, Zuhy Sayeed, the President of the Canadian Association, said it so beautifully, that we recognize that within the spectrum of human diversity, there is room for people who happen to have difficulty in the functioning of their intellectual capacity.

  And it is a very very difficult issue. In my practice, for instance and it's true in Canada and fairly true in the United States, if you don't give a label to people, very often they don't receive services. For example, in Ontario at this time, and it's true in Massachusetts too, autism is the big thing. There is a tremendous amount of money that is given to autism. There are very few real autistic kids but there are a large number of kids that could be labelled as being part of the autism spectrum disorder. And now we have parents who are telling us “I hate this label, but if you don't label my son, he will not receive the services along with the funding that is given to kids with autism.” And I think this is true for autism, but this is also true for developmental disability, or mental retardation.

  There are a lot of services in Massachusetts, for example, the Department of Mental Retardation is a very well-endowed department. But you have to label the kid, or the adult, as being mentally retarded, or a person with mental retardation, or a person with developmental disability, otherwise the person won’t receive the funding, so we're caught. It's a very difficult dilemma. If you're a bit enlightened, you don't want to label. You have to recognize, as Zuhy was saying, that's a part of the human experience. On the other hand, our systems that are in place at this time, don't allow us as practitioners not to label the person.

• Diane Richler

  Thank you. Any other comment on this theme?

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• Comment

  I think it's following up on Andre's point, but at a more global level. I think one of the challenges in terms of addressing the issue of not having a priority based on the issue of people with intellectual disabilities is the issue of data and demographics. In the development context, we have no mechanism for saying these are the people who we think are not being served or supported. So, for example, the Washington group is doing work around putting a standardized census question around disability at a national level, so that we can actually use this as evidence of the need to support these people.

  The problem is even if we do that, the response to that issue becomes a response that isn't necessarily around inclusion, it's a response for specific programmes or particular policies. And I think we need to struggle with how we create a priority, without actually having the results to be policies that are exclusive instead of inclusive.

• Diane Richler

  Thank you. I wanted to just read to you the definition of disability that's in the new UN Convention on the Rights of Persons with Disabilities. It says, “Persons with disabilities include those who have long term physical, mental, intellectual, or sensory impairments, which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.” There was a huge debate within the convention negotiation process about this, because this gets to the core of which people will be protected by the convention, which once ratified, should also mean which people would also be entitled to the supports and services that are outlined in the convention.

• Comment

  Thank you. As the person responsible for the area of classification in World Health Organization (WHO), I would very much like to invite suggestions, either now or maybe later on. We do want to move away in the Institute of Corporate Directors (ICD), from the term mental retardation, as I said on the very first day, but we do need concrete suggestions and some logic behind that. We are in the listening mode right now, so I would not say what WHO's opinion is at this point in time, but we are very receptive to ideas and arguments. Thank you.

• Diane Richler

  Thank you. Can I pose one other question before we move on to the second part of the discussion? Is there anyone here who has had experience where services or supports are being offered without labelling? Has anybody found a way in their jurisdiction to provide entitlements to people, not based on traditional definitions?

• Comment

  I agree that we hate labels, but what do we do? I agree with the previous comment that not giving the label is harmful, because we cannot receive resources and help. But it seems to me that it would be perhaps our task to choose the labels that are not harmful. And I know that in some countries, in my country Poland, and I know that in Soviet Union, we still use the pedagogy, and oligophrenics. It is really terrible, and I fight against it, but I cannot persuade the persons with the Ministry of Education and in the different ministries to change this label. But the ministries are listening to WHO, you are very powerful. If you would send the message that we prefer to change the label to something, which we all agree is acceptable, it would be good. Thank you.

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• Diane Richler

  Did we have an example of supports and services being provided without labelling?

• Comment

  There is a camp that I am involved with which is available for only a limited time per year, maybe a month out of the summer, and it has sparked many other camps around the world. There are about five or six in general, three of them in the United States and one in Mexico, and there's one in Guatemala, and we're hoping to start more.

  And in this camp there are absolutely no labels, and it does make it kind of difficult to explain it to people. But it's a camp that's very inclusive, and it's for adults with and without developmental disabilities. A lot of people have cerebral palsy, and a lot of people have Down Syndrome, and a lot of people have different paths of development, like we were talking about. And then there are people that don't have anything that's defined as a disability.

  There is a one to one camper/counsellor ratio. And what we've found is that when you have somebody who has difficulties due to one aspect of their development doing something fun with someone who doesn't, it's almost like a Utopian kind of thing. People come away from it and it affects the rest of their life for the rest of the year, and I wish this was something that was all year round, and that was in the workplace, and in medicine. But it does exist that there are people who recognize that you don't need to have a label or have it defined in some way in order to fit into a community like that.

• Diane Richler

  Thank you. Andre.

• Andre Blanchet

  This is an issue that interests us a lot. There is an agency not too far from where I live, in Massachusetts. It's in the community of a small town, maybe 30,000 people there. The name of the town is Attleboro. And there has been an agency there that has been in place for over 25 or 30 years, and it's a community based agency.

  If you look at the board members of this agency, there are a lot of leaders, natural leaders in the community. There are political leaders who are part of that agency. The agency used to be an agency for the mentally retarded, and so on. But what is does at this time, is to look at the needs of the people in that community. They know the people in that community, they know which people are aging and having some needs, and they know which people are developing different conditions, Alzheimer's etc. They provide highly individualized services for them, not trying to label them.

  So this agency has transformed itself from an agency that used to serve exclusively people with developmental disabilities, at that time they were calling it mental retardation, to a community based agency that looks at individuals and looks at their needs, individually. It is a very highly committed community based agency. For example, for people with Alzheimer's, for instance, they tend to keep them in their community, so that they die in their homes, instead of dying in a nursing home, which, you know, in the United States, that’s what happens most of the time. And the leaders of that agency are very aware of the non-labelling dimension, and the transformation of their agency into something that tries not to label people.

• Diane Richler

  And can you tell us anything about how that affects their funding? Does thefunding for the individuals that they support come from different streams?

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• Andre Blanchet

  That's right. Well, you see, this agency is very strong politically in their own community, so they are not dealing only with the Department of Developmental Disability, they are dealing with the Department of Mental Health, they are dealing with the Department of Aging, they are dealing with the Department of Housing, and so on. And if you go to their annual meeting, you will have 300 to 500 people there, and they are all members of that community.

  One of their strengths is that they have been in place for years and years and years, and they resist the kind of fusion, the craze that went on in Canada, that you fuse all agencies together so that they lose their own identity, and they lose the participation of the community. That has been one of their strengths over the years. Yes, they receive funding from different sources.

• Diane Richler

  So, they still have to label people to qualify for the funding, or they have to prove that the people qualify?

• Andre Blanchet

  They don't label people, they look at the needs of people.

• Diane Richler

  But in terms of dealing with the funders, they need to do something to prove that the people qualify.

• Andre Blanchet

  Well, I won't give out their tricks, but they have funding from departments without labelling people.

• Diane Richler

  That's great. Can you give us any reference for people who want to learn more about it?

• Andre Blanchet

  The name of the community is Beta community. You can go on their website and see. The name of the executive director is Bill Kelly, so if you go to Beta Community Services, you could look at their website.

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• Diane Richler

  Thank you. Trevor, do you want to make a final comment on this issue?

• Trevor Parmenter

  Just following up on Andre's comment. I was in a small country town in my state, about 12 months ago. I was asked to address a meeting of upwards of 60 parents, each of whom had a son or daughter who was in their 40's, the parents were 60 or 70 years plus. They would not qualify for government support for their adult sons and daughters, because they were not in crisis, but they were looking forward to a bleak future.

  I suggested to them that they go to the local mayor, and put the case that these parents have a need, and we don't really need to label their sons and daughters, because their sons and daughters are going to have a need when the parents are too old to care for them. And rather than waiting on the waiting list which does not exist in our State anyhow, because it's too embarrassing to have one, my suggestion was that they go to the mayor and suggest that they have a public meeting in this town and put the case to the citizens of this town that you have a responsibility as a community to assist these 60 parents.

  But how can this community do this? The citizens have the capacity to come up with ideas, innovative ideas. And that's the sort of building of communities that we dream about, where you don't have to get onto a waiting list, where we don't have to have someone come along and run an IQ test and say whether you're in or out. Because so many people are at the margins of IQ tests anyhow.

  And for those people who have a clearly identifiable disability, and one of the things that we haven't talked about much are those with, using old terminology, with severe and profound disability, who will never speak for themselves, and will have to speak through others. Those people are clearly identified by their health needs, by their schooling educational needs, by their communication needs, and we don't really need to run an IQ test on them. It's abundantly clear that they need support.

  So, I support this concept of community capacity building, and community to take responsibility for themselves. And in some of our developing countries, that is happening. Community based rehabilitation, that whole movement, was built around self help. Because the cargo cult mentality that some of us have developed in the Western world and imposed upon developing countries just doesn't happen. Nobody's going to come in with a rehabilitation facility, a 50 bed rehabilitation facility in the middle of Bangladesh, so self help is going to have to be the order of the day.

• Diane Richler

  Thank you. Let's move on the talk about the Way Forward. And maybe first, Andre, do you want to make the other comment that you wanted to make before?

• Andre Blanchet

  Well, there is a very colourful politician in the United States, who is very well known for his quotes. His name is Tip O'Neil, this Irish house-speaker in Washington for many years. He always used to say that all politics are local. And I would tend, following your comments about the implementation, Trevor, to say that all human rights are local. Because if you have these very nice pieces of legislation like in some countries, and Canada is well known for that, if there is no way to implement them, then it stays as a piece of paper. And it's true at the United Nations, when you look at the number of conventions that countries sign, and there is no implementation afterwards, so it's a lesson about us as human beings. It's very easy to sign a piece of paper, but it's very hard to do the work afterwards.

  You know, one thing that struck me when I was in Canada and I was at the Canadian Association for Community Living, is that we were not using very many lawyers. I'm not a lawyer so I'm not pushing for the use of lawyers, but one thing I learned when I came to the US and worked with Gunnar, is that they were not shy to use lawyers, and especially pro bono lawyers and human rights lawyers.

  Let me give you three or four examples of what we have done in Massachusetts. I happened to be involved with the Arch of Massachusetts, which is the parents association of Massachusetts. We had a waiting list of 3,000 people who were not being served by the Department of Developmental Disability, families not receiving services, not receiving supports. Following the advice of Gunnar we hired pro bono lawyers. The ones that we hired for this task would have cost us about $700,000 if we had had to pay them. But the end result is that now there is no more waiting list. We never went to court, but the government agreed to pay 50 million dollars more every year, so that we would solve the waiting list. It took us five years to solve the waiting list. So, people have the right to services, but in reality, they don't always get them.

  I'm hearing from families in Montreal, where there's a huge waiting list, but nothing goes on despite the fact that there are rights there. I'm consulting in Ottawa, and we have a huge waiting list in that part of Eastern Ontario, and nothing is happening there. So, we have to find ways both in the US and in other countries and Europe too, to make sure that people get their rights actualized, and if they want services, that they have to find services somewhere. And I'm not there to push the use of lawyers, but sometimes they can be useful for that. Gunnar was extremely masterful for that.

  For example, Gunnar helped to force the Government of Tennessee to close their institutions. Gunnar was one of the experts, and the proponent in Tennessee was the State's self advocacy organization. And Gunnar was such a master, do you know what he did? Gunnar was 84 or 85 years old at that time, and the judge was probably 75 or 78 years of age. And Gunnar said to the judge: “Your Honour, let's have coffee together this morning at the institution”. He brought the judge to the institution, for a surprise visit. Gunnar introduced him to the people who lived there and then the judge understood.

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• Diane Richler

  Thank you. In addition to your local advice in terms of using litigation, I also heard an idea for the Atlas Mark 2, and that is the issue of unmet needs. Whether there are official waiting lists, in the US, or simply, like in Australia, people who are not on a list but are not receiving services. How can that be quantified in some way, to make the need evident? The Atlas certainly points to the gap that exists, but there's not solid documentation of the number of people who aren't receiving any supports or services.

  Do you want to make a comment?

• Trevor Parmenter

  No, I'd just like to hear from some people in the audience, particularly low and middle income countries. I'd be interested in any suggestions they might propose on how we might get more reliable data into the hands of WHO, that could be published in an Atlas Mark 2. Because I think those of us in the high income countries are so inestimably better off, overall, compared to people in developing countries, despite our complaining about a lack of services and resources. And so I'd like to hear how people might propose to do that.

  I remember talking to a medical doctor who made a strong plea for help in identifying people in Bangladesh who had an intellectual disability. But I'm at a loss as to how that might be done in the poorer countries, and what help they may need to come up with those data. In the last Australian census, we collected data on disability for the first time in the national census. We do a regular survey, a sample survey, and there is quite a difference between the rates in the census data and the survey data, which means that we're going to have to look much more closely at definitions. We've used the ICF quite clearly in trying to get those data in the national census, but the prevalence rates from the census are much lower than in the survey data.

• Diane Richler

  The census is much lower.

• Trevor Parmenter

  Yes. But of course, in both cases, it's self identification.

• Diane Richler

  Yes. And what are the numbers?

• Trevor Parmenter

  Well in the survey data, the figure is that almost one in five people would argue that they have an activity restriction. But in the census, we asked a question which talked about levels of restriction to activities, and the percentage is much nearer to 6 or 7, I believe. Don't quote me on that, but I know that it's much lower. It's less than half of what came up in the survey. Those data haven't been made public yet. That's why I'm being cautious.

• Diane Richler

  Thank you. Yes, please.

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• Jayanthi Narayan

  Good morning, I'm Jayanthi Narayan from India. Talking about prevalence rates and census, for the first time, the Government of India included mental disabilities, as they called it, in the national sample survey last year. In the past, the prevalence was believed to be about 2.5 percent persons with intellectual disabilities. However, the sample survey showed 0.9 percent, now we are trying to understand this discrepancy. Is it a lack of awareness? It's a door to door survey that is done, so it that lack of awareness? Is it that the families shy away from informing that they have a person like this at home, when they heard that it was a door to door survey? Or is it the very issue we have been talking about since the discussion began, about labelling? That they don't perceive the child to have a disability.

  As we know, by default, India has always been an inclusive society. We never had segregation, institutionalization. So such persons have always been with the family, and accepted socially. The reason why people have not informed, is it also answering the labelling issues? When the family and community don’t perceive him as having a disability, should we insist that they bring him out and label him? On the one side, yes, it is required, so that, as we discussed, he will receive the benefits that the government is offering, when he has a certification in his hands. On the other side, if the family doesn't see the disability, especially for those with a mild level of intellectual disabilities, in rural areas, is it necessary for us to go and have them stigmatized then come back?

  The issue remains, and right now it is time for the next national sample survey. There is going to be a meeting on this issue. Why is there a discrepancy and how we are going to handle it? I just thought I would share this.

  One other thing about labelling is an experience that I think set me thinking, as a professional in the field. I thought I would share. In one of the self advocacy meetings that we had, a person with intellectual disability came and said “I like my label. I want my label because it entitles me to many benefits. When I get onto a bus, the bus driver says to me: You don't have a problem. You have a fake certificate in your hand.” He has been trained to travel independently, and we are very proud to say that he doesn't look like he has intellectual disability, although by technical definition, he falls into the definition of high difficulty. “No”, he says, “I like my label because it gives me many benefits, and if you want to be my escort, you will also get the benefit. So I like my label.”

  The point I am trying to make here is that this is coming from a person with intellectual disability. We are talking about them for them, and maybe it is also important to hear from them how they look at the issue. I'm talking from the Indian perspective on this. I thought it is important that I share both of these issues. Thank you.

• Diane Richler

  Thank you

• Trevor Parmenter

  I can't wait until I retire, and then I get a pensioner's card. And then I can travel right around Sydney for $2.50 anywhere. My wife has just got one, but she only works 2 days a week, and unfortunately I work 5 days. But I cannot wait to get that benefit. One of the strengths of the American Association's support needs is that it identifies people’s support needs in their particular environment. For example, people in a rural community that, to use my colleague Eric Emerson's term are not obtrusive , and don't stand out in their society, so they don't need a label as they often don't need supports. But bring that person into an urban society: put that person into a very competitive school, and it's a different circumstance. In that setting the person will need higher supports, so maybe the concept of supports is a way forward, so that the label is on the support, not on the person. It's a thought.

• Diane Richler

  Yes, please.

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• Rob Greig

  Thank you. Rob Greig, from London. I'd like to make a specific suggestion that the World Health Organization could think of doing. But to do that, I need to make a point and then ask a question.

  Intellectual disabilities are a low priority for governments, and there is a lack of well-identified, accountable authorities. And that seems to me to be important. Governments have signed up to declarations of human rights, the new UN Declaration on Disability, and therefore ought to be doing something about it. I would suggest that non-government organizations are probably the organizations and the people that get the most done, and make the most difference. And individual practitioners and professionals are people who, working on an individual basis, working with people supporting them, can make a difference in individual lives.

  But governments do one of two things: they either help make things happen, through policies and funding and actions, or else more often they get in the way of other people doing things, by putting up blocks and barriers in the way. And which they do will depend upon political systems and cultural systems and other things. But either way, governments have to do something. And the World Health Organization is a body that represents governments, or governments link into it.

  So, given that, with your permission, Chair, I'd like to ask a question of the participants here. If people would mind indicating with their hand if they are one of two things. Which is either they're here on behalf of their government, or their government knows that they're here and has asked them to report back afterwards on what they should do. Would people mind just indicating with their hands if either of those two things applies to them; either they're here on behalf of the government, or the government knows they're here and has asked them to report back? If you're here on behalf of your nongovernmental organization, or your professional body or yourself, then don't indicate.

  I'm trying to get at how many governments in the world that relate to the World Health Organization have actually sent someone here, or authorized somebody to be here on their behalf. And that's not saying that if you're not, you're less of a person. It's actually the opposite.

  The lack of hands going up in the air is actually my point. The World Health Organization has consulted governments, has produced this Atlas, and governments have shown a complete disinterest in the results of it. And I think the WHO needs to do something about that. I think, and this is part of the conversation we had during the European lunch, that an action for the World Health Organization, after this, could be to go back to its Regional Offices or whatever, and say to them, “You've signed up for the declarations, and the evidence is that almost no governments are taking an interest with people with intellectual disabilitiesd”.

  We've heard from Helena in the first presentation of the first day, that they're supposed to be monitored, they're supposed to show positive action after they sign up for those things. As a minimum, the World Health Organization should be asking governments to identify who, on the part of the governments, is going to take the lead on fulfilling their responsibilities on this, because then, at least you can have a dialogue with governments. If that happens, it might then be easier for the all nongovernmental organizations and professionals to effect some change.

• Céline Mercier

  It's just that I want to answer that from the point of view of someone, who tried to find someone to talk to, especially Jocelin , someone to talk about the government, and to talk for the sake of a country. That's really an issue of fragmentation. You can have many many contacts with different departments and constituencies, and no one wanted to take the responsibility to just fill out a questionnaire about intellectual disabilities. This issue was mainly relevant for high income countries because they have very complex bureaucracies, and no one wanted to be the person, the respondent, the focal point for a country. And when we are talking about dialogue, that makes things very difficult, when everyone is ready to talk with you off the record, but not in an official sense.

• Zuhy Sayeed

  I'm really struck by our coming together to have this kind of discussion, and my comment and discussion will follow very closely on Rob's comments, and certainly Céline's as well.

  Just to illustrate a point that Céline made, a few years ago the Canadian Association for Community Living took on the organization of a Congress on Children with Disabilities that was traditionally held in the US, and came out of the US into Canada for the first time. We did try very hard to find someone in the Canadian government that would actually talk about children with disabilities, and it ended up being, as you said, very fragmented.

  The second thing, I think, is that WHO has certainly taken the leadership and brought us all together. I think we've commented on this yesterday and certainly have said our thanks, but I want to take it one step further.

  I think WHO has shown it's leadership, and our proposal, or our suggestion to the secretariat of WHO, would be to continue to enable community and governments to have this discussion, and maybe to formalize this in WHO with a focal point on intellectual disability. Having a person or a portfolio responsible specifically for these discussions and these issues, I think, would give governments more impetus, and we would have more leverage, certainly with WHO's leadership, to have governments present at these discussions. I think there has to be a place where community organizations and civil society can come together with governments, and we in the community cannot do that alone.

  So I would strongly urge WHO to think about how we can assist you in putting a very strong proposal or recommendation together that there be a focal point in WHO that specifically deals with the issues of disability, or I would go so far to say, intellectual disability, but maybe it's just cross disability as well. I would support that too.

• Diane Richler

  Do you think that would help to attract a better government response, if there were a focal point within WHO for these issues?

• Rob Greig

  I think it would. I would endorse and support that. I think, and this was part of what we were just hearing, that it needs to be framed carefully, because of the issue of it being the World Health Organization. But I think that a starting point would be a dialogue with anyone in the government, taking Céline's point about government being fragmented. Perhaps it's better to get somebody just from the Department of Health rather than nobody to talk to, because then at least they can go back to their country and start talking to people in other bits of government, hopefully.

  So, I think there's a challenge about asking governments, and putting pressure on governments, and I speak as one of the two people here in a government role. If you do that, it helps. It won't be immediate change, but if we don't ask that at all, then I just think that governments will continue to evade responsibility. It may be that some governments will actually get an NGO to take that responsibility for them, and that's great, that's fine. But they need to know that's the case, rather than just wash their hands of responsibility for intellectual disability, which I suspect most governments are doing.

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• Diane Richler

  Any other comments?

• Trevor Parmenter

  There might be a precedent. Our friends from Geneva could help us here, but I've worked with International Labour Organization (ILO), which helped sponsor a group there that brought the needs of people with disabilities in employment to the fore, and there's still an ongoing relationship in ILO in that respect. I'm not sure if they have an identified person, but I remember Barbara Murray who used to work here in Bangkok, and my last visit to Bangkok was an ILO meeting. The other agency, of course, is Organisation for Economic Co-operation and Development (OECD) , which has the Centre on Educational Research and Innovation, which has a very strong interest in transition and disability. So some of the United Nations sponsored organizations do have some focal points. I certainly personally support the proposal for WHO.

• Diane Richler

  I think there are people here who certainly know the WHO system better than I do, but there is a division within the WHO at the world level, where there is responsibility for most disability issues within the Department of Rehabilitation. Generally these issues that we're dealing with here fall within the Mental Health Division, which deals with both Intellectual Disability and Mental Health, but there has not been a specific focus on intellectual disability.

  I think there was a very open recognition of that at the conference in Montreal that produced the Montreal Declaration, and I think that whatever support has come from Geneva for this meeting is a sign of that. But clearly there is not a specific direction, there's not a lot of momentum from Geneva in the way that Zuhy's suggestion might respond to.

  I'm wondering if there's someone here from the WHO system, who could comment on what kind of a mechanism might be possible, so that if we're making a recommendation, it would be one that would be really practical. I know that the organization of responsibility is different within the regional entities than it is in Geneva. Is there anyone here who is comfortable talking about other examples of what exists, or what might be possible?

• Comment

  Thank you for the good question. Actually, within WHO we have two kinds of departments. We have the Department of Mental Health, that deals with the issue of what we call mental retardation. Mostly we are looking at prevention, and care for people with mental retardation. Now the other department deals with disabilities in general, and they are looking at the management of disabilities. We try to work together, in such a way that they are dealing mostly with physical and sensory disabilities, and you are dealing mostly with mental disabilities.

  This is reflected in the Regional Offices. We have Regional Advisors for Mental Health, and four of them are here. And there are also Regional Advisors for Rehabilitation. In one of the regions, Dr. Vijay Chandra was until recently in charge of both Mental Health and Rehabilitation. Now, things are moving by the week in WHO, I don't know the names of the Department. When I'm back in Geneva, quite a lot of things will have changed. Dr. Helena Nygren-Krug represents another approach to the issue. So if you approach it from the human rights side, you have another approach.

  Now WHO, I used to say, is any bureaucracy that you know multiplied by 193, which is the number of member states. We have very heavy bureaucracy. So if you go to Geneva to ask for anything, we must go to the Regional Offices, then to the country offices to have anything moved on. And again, depending on what your main issue is, you may go for Mental Health, for Rehabilitation, or for Human Rights. We are trying more and more, as you can see in this conference, to work together, identifying in which issues we can work together. We took part in the development in the Convention on Rights of People with Disabilities, but now it's mostly sitting in the Department of Human Rights. So it depends which of the actions we are dealing with. We have different entry doors. Not only WHO, but also at the countries.

  As I mentioned to you, some of the issues, most of the issues, are not quite in the Department of Health, Ministry of Health, Department of Mental Health. And as some people mentioned here, in some places it's preferable that it's not in the Department of Health and Mental Health because the kind of care you can have there is just the institution. It's the kind of care which is non-care, it's just a deposit. You put people there and you leave. There are no specific programmes, no treatment, and most of these people don't need any medical treatment as such. They need rehabilitation, or that kind of opportunities, which is, I would say, on the fringe, on the border of the Department of Mental Health limit, if you wish.

  So, as I said, we try to work together and identify what is the action, and how can we at least give the kick to the action. We are in good position, the WHO, to see where the links are, where the doors are, even though we might not be the best people to knock at the door of the Ministry of Labour, Ministry of Welfare, if they are not connected with Health or Welfare, depending on the action. So, we have to think in this perspective. Starting with prevention, which is sitting clearly in Mental Health, up to rehabilitation, which is sitting in another department, and human rights, which is another one.

  Whichever is the entry, if any one of you contact us, we will try to see which is the best route, best routing for the action, and we will try to mobilize this kind of action for you. Mental retardation is really a priority for us, as a whole, even though we have to change the labels, the tags, or the names. Even when we talk about prevention, most of the actions are not in the Department of Mental Health. When you talk about the ionization of salt, or of water, it is not the Department of Mental Health. When you talk about improving labour attention, attention to delivery, this is again not the Department of Mental Health. It is the Department of Mental Health, though, who is flagging it. We have to improve these kinds of things for the benefit of people with mental retardation. So, I leave here the openness of the WHO as a whole, to help identify which is the best route and which is the best action. Even though it is not sitting in Mental Health.

• Diane Richler

  I wonder if I can just follow up though, because my sense of what prompted the recommendation and some of the other comments that are coming out is that there's been an expression by WHO that issues of intellectual disability are a priority. At least the representative group in this room doesn't feel it, doesn't see it.

  I think our experience, generally, is that the World Health Organization has tremendous convening power and authority, and when the WHO says something is important, Ministries of Health and governments listen. The fact that only two governments authorized people to come here is an indication that governments did not perceive the World Health Organization as saying “This is an important issue. This is an important event”. So, maybe there is something else happening around intellectual disability that nobody in this room knows about, but if it's only prevention, that's clearly not what the Atlas-ID points to as the priorities for the Way Forward, and it doesn't seem to be what the group is saying should be the priority. So if it's a priority of WHO, where's the evidence of that?

  Who do we have to talk to to find out how it's been prioritized, and maybe make some suggestions for changes that would be more in line with the kind of recommendations that Trevor made and to what's contained in the Atlas? And if there isn't a focal point to go to, then how do we make sure there can be some kind of dialogue, so that the expressed priority becomes more manifested in a way that causes governments to take action? Because right now, there seems to be a de-linking. If there's a priority at WHO, it's not being translated into communication with government.

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• Comment

  If I may just complete two points. It's not clear, but the Director of the Department that deals with Rehabilitation happens to be the husband of Dr. Helena Krug, who was here. So you see, the top gets flowing even in informal links. The Department of Rehabilitation was not here, however, we have perhaps the strongest link, the wife of the Director, she was here with us.

  There is another issue, which doesn’t appear clearly in the Atlas, which is quite relevant for us, which is the care for the mental health, in general, of people with intellectual disabilities, and I refer here to what we call co-morbidity. People with intellectual disabilities have depression, they have many other kinds of mental disorders, and these people need special attention to their mental disorders when it happens. We're not talking about mental retardation. Depression, anxiety disorders, sleep disorders, and the people in mental health care are not prepared to deal with co-morbidity in general. We are trained to deal with one disease at a time. We know that people over 50 who have depression quite likely will have hypertension. But all our medical schools teach us to treat, when they treat, hypertension, depression, diabetes, things in isolation. And the needs, the mental health care needs, of people with intellectual disabilities, is not yet taken care of.

  Now, this is an entry point directly with us. You can approach any of these three entry points in WHO, and we will attempt to see which is the best routing. Where we are the strongest. We have a section, a team, in our Department of Mental Health, dealing with the rights of people with disabilities due to mental disorders, mental disabilities, intellectual disabilities, whatever you call them. We have a team on management of mental and brain disorders. And we have Rehabilitation. Please feel free to knock at our door, whenever you want.

  We are not organized, if this is an answer to your question. We don't have a focal point for mental retardation as such. Mental retardation, intellectual disability, is not a point as such in WHO, just as depression is not, schizophrenia is not. We have a different approach. We don't have a vertical approach to all these mental conditions. Any of these, we have a different approach to it. If you come to WHO and ask who is the focal point for intellectual disabilities, the doorman would be lost.

  If you ask, who is in charge of Human Rights, they easily indicate the person to you. So, our approach is not like the structure of universities. We don't have a section on psychiatry, for instance. Our approach is different. The door is open. Come and ask us and we'll try to see the best way of dealing with the problem.

• Diane Richler

  I'm realizing that I'm too engrossed in the debate, and so I'm doing a very bad job as Chair, because I see that we've gone well over the time. There's going to be more time this afternoon to continue these discussions.

  But I think that the sense that I'm getting from this dialogue is that while the WHO maintains that it has this priority, it's not evident to the people who are practitioners in the field. And I think many of us are aware that the Department of Rehabilitation is now doing a major study on rehabilitation and disability, but intellectual disability and psychosocial disabilities are getting lost in that. And while the study is being painted as a study of disability broadly, these issues get lost.

  And so this is the question that came out in Trevor's presentation. The balance between how do you make sure that issues affecting people with intellectual disabilities get protected while still using a cross cutting approach and a more universal approach. And I think that's what you're saying, that the WHO has tried not to have separate departments. But then does that mean that issues get lost, and what's the best way to make sure that issues affecting people with intellectual disabilities are protected? We are going to go to lunch, but I just want to give Trevor one more chance to make a comment before we go.

• Trevor Parmenter

  You must have sensed the body language. With due respect to our colleague from the World Health Organization, I would hate to see us use the co-morbidity as the way through, and I'm one of the researchers who has some very good data on the prevalence of mental health issues in people with intellectual disability. I'm fairly positive, though. In my early roles with IASSID, I worked closely with WHO in having the IASSID aging special interest group work with it, publishing a co-produced statement on aging and intellectual disability. We've had statements on mental health, physical health, we're producing one on ethics at the moment, and the collaboration has been very strong. I do think we need more dialogue. The structures may not be just what we want, but I think the way is open given the evidence of the commitment of WHO is in the Atlas production. I think we have runs on the board, and I'm feeling very positive. I think a way forward will be found. And I reiterate “carpe diem”!!

• Diane Richler

  Thank you very much. Thank you all and we will see you back here at 1:30.

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