Ethical consideration for neurodevelopmental disorder pathway service evaluation and research

Abstract

The Disabilities Act of 1990 and the Developmental Disabilities Assistance and Bill of Rights Act of 2000 of United States in act to prevent social exclusion of people with intellectual and developmental disabilities (IDDs) and to cut back on unneeded expenditures to society.  However, despite the protective legislation, the rights of adults with neurodevelopmental disorders have not yet been fully realised. There are several obstacles to overcome the neurological development related health care services, including health care usage, educational and career pathways, family and social lives, self-fulfilment, and quality of life. There are significant gaps in the transition process that affect the health care systems. Lack of transition and transfer planning, neurodevelopmental disorder health care pathway services have lack of experience, education, and expertise which result the inadequate growth of the health care quality and create communication gap in between service providers and service users.  The aim of this short communication is to mention and clarify the ethical concerns of neurodevelopmental service evaluation.