Developmental disabilities: challenges for research practices and policies in the 21st century

Abstract

Some of the issues include: how can modern research be translated into everyday practices and policies? How can we make use of new biomedical, psychosocial, and public health technologies? And, particularly in Central and Eastern Europe, how can we eradicate the deep-rooted myths about developmental disabilities that have shaped practices in the past? In the past 20 years many innovative services have been introduced in the area of childhood disability. It is sad however, that the huge amount of research in the field of developmental disabilities 1 has not resulted in full implementation of basic rights for children with disabilities. A similar gap between the results of good research and translating such research into everyday practice has also been identified in the area of mental health services 2,3 For many decades children with developmental disabilities in countries in Central and Eastern Europe were held hostage to state policies of institutionalization and medicalization, according to what was then perceived as the science of ‘defectology’ (i.e. children with developmental disabilities were ineducable and should be institutionalized) and child psychoneurology (i.e. providing highy medicalized care for children with emotional and behavioural problems). In many countries of this region more resources are still allocated to institutional care for these children than to providing community-based and family-focused services. Apart from institutionalization, other practices aimed at solving the problems of children with disabilities, although well intentioned, have sometimes led to tragic mistakes. These include treating autism and mental retardation* as ‘diseases’ and employing ‘therapies’ that are mostly ineffective or even harmful, often based on manipulating the hope of parents for a ‘miraculous’ cure for their child with disabilities. As a member of the committee for the implementation of the United Nations Convention on the Rights of the Child, I have had a unique opportunity to observe that the rights of children with developmental disabilities ‐ the right to education or the right to live with their parents rather than in institutions ‐ are seriously challenged all over the world. Although the second half of the 20th century has been marked by obvious progress in this field, children with disabilities in many countries of the world are suffering from grave violations of their basic rights. There are many safeguards that can be put in place to prevent mistakes in the provision of services for children with disabilities and in investing in research. One of the strongest protective factors is a rights-based approach. Dialogue between politicians, professionals, researchers, and parents of children with disabilities is a prerequisite for effective implementation of modern, evidence-based services based on a human rights approach. Modern research on genetic and biomedical determinants of disabilities needs today to be better integrated with social research and the social model of disability that is currently dominating disability policies and practices. The social model of disability acknowledges that obstacles to full participation and inclusion for children with disabilities reside in the social environment rather than in the individual and that such barriers can and must be prevented. Most of these obstacles and barriers are of an attitudinal nature, and this fact needs to be addressed more convincingly in research as well as in provision of services. We must avoid the mistakes of the past and implement the principles of participation, inclusion, and autonomy for children with developmental disabilities through better interaction between biomedical and social research and practices and policies.