Invisible children with intellectual disabilities

Inclusion Europe is doing a project to protect the rights of children with intellectual disabilities in the European Union. We hired experts to find out  if the rights of children with intellectual disabilities are respected in their countries. This article talks about the research. The final results of the research will be launched in Brussels in October.

The preliminary results of the national reports were discussed in March at a two-day Symposium in Brussels held by Inclusion Europe.

Organisations and institutional bodies

Unsurprisingly, children with intellectual disabilities are rarely mentioned in any State or NGO alternative reports about the implementation of the UN Convention on the Rights of the Child. As Lesley Campbell, the UK expert, reported children with intellectual disabilities are seen as” children in needs rather than children with rights“.

One of the preliminary key findings is the lack of co-ordination of the relevant departments dealing with child policies and/or with disability policies. All over Europe, the same conclusion is made: the co-ordination between agencies and authorities (health, education, social care) is far from satisfactory.

Only in very recent years the vulnerability of children with disability and children with intellectual disabilities to abuse, harassment and bullying has been recognised in national and local policies. However, experts found that the implementation of the overall national strategies to safeguard disabled children remains a major weakness.

Education

As far as education is concerned, it is encouraging to see that in all countries involved in the project, there is a policy direction to promote inclusion in mainstream education for children with intellectual disabilities. However, the reality does not match the legislation and policy. “The special system for children with special needs is so strong that it leads to a prolonged parallel system“, states Geert van Hove, the Belgian expert. Too many barriers still exists to really implement inclusive education. “The right of children with intellectual disabilities to participate in their own local community alongside their peers remains far from being implemented, especially in education“, concludes Mari Saarela, the Finish expert.

Support

Support for families is mainly available in cities or urban areas. Families living in remote areas do not have access to the same level and quality of services. Often families do not have access to information. They have to fight to obtain information that is often fragmented to only a specific area – on education, healthcare or related to social benefits. In most countries family-based organisations or self-help groups are still seen by the parents as the main source of information for taking informed decisions.

Rights

In some countries positive progresses have been made in reinforcing the rights of children with intellectual disabilities, notably through the establishment of Ombudsman or Commissioner for Children's Rights. However, there is still a gap between legislation and everyday life. Sonja Uhlman and Gerardo Echeita, experts for Spain, are describing how contradictory policies contribute to this gap: “Contradictory policies and actions regarding the general principles towards more inclusive strategies have been observed (education, de-institutionalisation and participation…) this slows down the process and limits the depth of changes and improvements. Numerous of families face dissatisfaction, disillusion and growing sense of frustration”. In Greece, “laws are not consistent in the way they apply the principle of equality, non-discrimination and equal opportunities“, states Ioanna Kouvaritaki, the Greek expert.

Statistical data

Preliminary findings also show that there are huge differences in available statistical data about children with disabilities and children with intellectual disabilities between the countries. In addition, the data collection is patchy, and not consistent: there are very few statistics in the area of promotion, participation and anti-discrimination. Only some experts reported about the availability of data regarding age group of children with disabilities in Cyprus, Hungary, Italy, Latvia, Lithuania, Slovakia, United Kingdom (some parts). There is no systematic reporting on abuse, and no data on abuse of children with intellectual disabilities. In the area of education, age group of children with disabilities educated at mainstream primary schools, special primary schools and in institutional care is relatively frequently available (e.g.: in Greece, Italy, Ireland, Slovakia, Slovenia, Czech Republic, Spain and Scotland), sometimes even disaggregated by age group of children with intellectual disabilities. But for secondary education data is available in only four countries (Czech Republic, Hungary, Slovakia, Spain)!

Some estimated data about children with disabilities, including children with intellectual disabilities, living in large residential institutions have been found in 15 countries out of 21. However, the figures are often only estimations.  In addition, the number of children adopted and in foster care is often available but not as disaggregated data. Therefore it is often not possible to identify if children with intellectual disabilities benefit or not from foster care or adoption.

National experts also highlighted that additional statistical data is available but is not used or reported about in the State or alternative reports that are regularly submitted to the Committee on the Rights of the Child.

Legislation and policies

In summary, the preliminary findings clearly point out that often legislation and policies are in place and cover also children with intellectual disabilities but there is no evidence or reports about progress of their implementation. The main reasons are seen mainly in the absence of data and benchmarks to measure progresses and impact on children with intellectual disabilities and the absence of policy evaluation.

All the findings gathered will be published in the form of a European report, and lunched on 20 and 21 October in Brussels. For more information about the project and the conference go to www.childrights4all.eu