< Viewpoints < 2009

A neglected human rights crisis: persons with intellectual disabilities are still stigmatised and excluded

[14/09/09]  People with intellectual disabilities tend to be among the most marginalised. Even today their treatment is clearly inhuman in country after country, even in Europe. They have limited possibilities to make themselves heard and this has contributed to making their situation a hidden human rights crisis. It is time for political decision makers to stop ignoring these vulnerable citizens.

Before policies are designed, it is necessary to be clear about different kinds of disabilities and apply the relevant terminology. A distinction is necessary between persons with psychiatric problems (e.g. schizophrenia and bipolar disorder) and those with intellectual disabilities (e.g. a limitation caused by, among others, Down’s syndrome).

Though there are some people with intellectual disabilities who also have mental health problems, the two kinds of impairment are different; they have different causes and effects and, therefore, define different needs.

Though persons with any of these disabilities suffer human rights abuses, I am focusing here on those with intellectual disabilities. What is common for them is a reduced level of intellectual functioning which may affect learning and language capacity as well as social skills.

It is, however, stressed by experts on disability and health that the degree of impairment differs greatly between individuals and that generalisations should therefore be avoided. The response has to be individual.

The key point is that persons with intellectual disabilities, as for other human beings, are entitled to basic human rights and fundamental freedoms. This was also the simple request formulated at a remarkable WHO conference in Montreal five years ago. Among the participants were persons with intellectual disabilities, their representatives, families, service providers and other specialists1.

The adopted “Montreal Declaration on Intellectual Disabilities” made points which should not have to be raised, but had remained ignored until then and, in fact, are still not taken seriously enough.

The declaration called upon governments to implement the agreed human rights norms for persons with intellectual disabilities; to consult with them on relevant laws, policies and plans; and to take steps to ensure their full inclusion and right to participate in society.

Furthermore, it asked governments to allocate sufficient resources and to provide the necessary support to persons with intellectual disabilities and their families; to strengthen their organisations; and to develop education, training and information programs for them.

These proposals are realised only to a limited extent. During missions to Council of Europe member states I have had to conclude that persons with intellectual disabilities are still stigmatised and marginalised; that they are rarely consulted or even listened to; that a great number of them continue to be kept in old-style, inhuman institutions; and that moves to provide housing and other services in community-based settings have met obstacles and been delayed.

Conditions in some of the “social care homes” are appalling in many countries across Europe. In these segregated institutions very little, if any, rehabilitation is provided. Not infrequently, persons with intellectual disabilities are placed together with persons having psychiatric problems and unnecessarily given sedatives against their will. They are in some cases deprived of their liberty and treated as if they were dangerous.

Many are cut off from the outside world. Intellectual disabilities – like other disabilities – carry a stigma, and many people have been abandoned by their families through shame and lack of alternatives.

Staff at these institutions are almost always underpaid. However, I have met many dedicated and caring employees who try to do their very best with extremely limited budgets. Almost without exception they stress the need for more political support and resources at a more reasonable level. Though many governments have adopted Plans of Action in this field, these have not been sufficiently funded. Many have also not been monitored appropriately, so that plans often drop out of political attention and there is no follow-through.

The call for de-institutionalisation has, however, not gone unheard. In Albania, for instance, I noticed that the process of moving persons to community and family-based housing had already had some satisfactory results. In the “former Yugoslav Republic of Macedonia” an ambitious strategy was adopted, and strong efforts were also being made in Serbia – though some families were unable to receive their relatives back home.

More efforts are obviously needed to prepare such moves and to develop adequate services at the local level – in consultation with organisations protecting persons with disabilities. It has to be recognised that life in the broader community may not be easy, even for those who have not been heavily institutionalised. Prejudices against persons with intellectual disabilities are widespread.

Some progress has been made in the case of children in the process of de-institutionalisation, therapy and rehabilitation. The infamous collective homes for disadvantaged children are being slowly phased out, in eastern European countries as well, where they were common. Every European government has recognised that such institutions are not good for children.

However, it has also been learnt that closure of these homes must be done with some care to avoid institutionalised children being further damaged. Furthermore, there is a need to take measures to create alternatives, which include efforts to build support to families, to establish a child-friendly foster care system and to monitor their functioning.

In spite of some progress during recent years for the rights of the child in general, too little is done to ensure that children who show symptoms of intellectual disability are given sufficient attention, care and support. Efforts to diagnose problems at an early stage in order to facilitate early intervention are not given sufficient priority.

Schooling is another problem. Very few children with intellectual disabilities are offered specialist assistance tailored to the individual child in ordinary schools, while ‘special schools’ – a segregated system which is often the beginning of lifelong social exclusion – remains the norm. Many children are not provided with their right to education at all. For instance, the European Committee of Social rights concluded that children with intellectual disabilities and living in Homes for Mentally Disabled Children in Bulgaria were deprived of an effective right to education2.

Health care for both children and adults with intellectual disabilities is another serious problem. Persons with intellectual disabilities may have greater health needs than others. At the same time they are often confronted with discrimination by healthcare systems, whose staff neglect to provide healthcare on an equal basis with others, and fail to appropriately communicate with persons with intellectual disabilities.

The result is that the care they receive tends to be of poor quality and that health problems go undetected. There are indications that they have a shorter life expectancy and higher morbidity rate than the average population. The sum of all this is that the medical system has failed to meet the particular needs of persons with intellectual disabilities.

Adults with even minor intellectual disabilities are discriminated in the labour market, even for jobs they have the qualifications and skills to do. Efforts to provide sheltered job places have in some cases, unfortunately, contributed to the further isolation of the individuals.

Little is also being done to develop a wise and rights-based approach to the problem of the legal capacity of those with intellectual disabilities. It may be in the nature of this impairment that problems occur in relation to how one represents oneself towards authorities, banks and other such institutions. This, however, is no justification for a policy to routinely incapacitate people with mental disabilities and put them under legal guardianship where they have no say in important decisions affecting their lives3.

Another major problem is that families with members having intellectual disabilities are often left on their own, in spite of their important role as care givers and as people who can understand and communicate with the person with intellectual disabilities.

A sad consequence in some cases is that parents and other family members just cannot cope, and that the individual with a disability will be seen as nothing but a burden. In some countries families seek to place their adult child with intellectual disabilities under guardianship and send them to an institution, as they want to ensure that their adult child survives when the parents are no longer able to look after them.

On one aspect there has, however, been considerable progress since the Montreal meeting in 2004. We have now international agreements which include norms on the rights of persons with intellectual disabilities. Every state should ratify the UN Convention on the Rights of Persons with Disabilities and all members of the Council of Europe should respond constructively to its Action Plan 2006-2015 to promote the rights and full participation of people with disabilities in society4.

It is urgent to move from word to action and to ensure that effective steps are indeed taken. The UN Convention requires states to set up a mechanism to coordinate government action; to establish an effective system of independent monitoring; and to invite civil society – and in particular persons with disabilities themselves and their organisations – to take part in the monitoring5.

Such measures would help address the stigmatisation and marginalisation of persons with intellectual disabilities and encourage instead their participation and integration into society to the maximum extent possible. This change would make our societies more humane.

Thomas Hammarberg

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Notes:

1. The meeting was organised by WHO and Pan-American Health Organisation, 5-6 October 2004; The declaration can be found on www.declaracionmontreal.com 
 2. ECSR, Mental Disability Advocacy Centre (MDAC) v. Bulgaria., Complaint No. 41/2007, Decision on the merits of 3 June 2008. The Special Rapporteur on the right to education also made strong recommendations towards inclusive education for persons with disabilities. See The right to education of persons with disabilities, 19 February 2007, http://daccessdds.un.org/doc/UNDOC/GEN/G07/108/92/PDF/G0710892.pdf?OpenElement…
3. This particular issue will be addressed in a forthcoming Viewpoint.
4.  According to recent information from the United Nations only the following European countries have so far ratified the UN Convention on the Rights of Persons with Disabilities: Austria, Azerbaijan, Belgium, Croatia, Denmark, Germany, Hungary, Italy, San Marino, Serbia, Slovenia, Spain, Sweden and the United Kingdom.
 5. Article 33 of the UN Convention

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Links:

WHO
UN Special Rapporteur on the Right to Health
UN Special Rapporteur on the Right to Education
Mental Disability Advocacy Center
UN Convention on the Rights of Persons with Disabilities
Recommendation (2006) 5 of the Committee of Ministers to member states
on the Council of Europe Action Plan to promote the rights and full participation of people with disabilities in society: improving the quality of life of people with disabilities in Europe 2006-2015

Recommendation (2009) 6 of the Committee of Ministers to member states on ageing and disability in the 21st century: sustainable frameworks to enable greater quality of life in an inclusive society
Inclusion International
Inclusion Europe
 


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