Life planning for people with neurodevelopmental and intellectual disability: effective support, quality of life, and community engagement. Preface

Ivan Brown
2020 Annali dell'Istituto Superiore di Sanità  
It is an honour and a pleasure to be asked to introduce this monograph. The contents of the articles it contains represent recent thinking and research in the field of neurodevelopmental and intellectual disabilities (NDID) that are important to share and apply. It also affords me an opportunity to review the major trends in the field of NDID today, and to stress the importance of its principal applications. Over the past three decades, two philosophical concepts have dominated our thinking and
more » ... ed our thinking and guided our research and practice: social inclusion and quality of life. Social inclusion represents a major shift in our thinking -away from seeing disability as "difference" and something that is devalued and unwanted in our societies, and toward seeing human diversity of all kinds (including disability) as contributing to a richer and healthier society. The central view here is that all citizens have a right to fully access the life that is common to us all but, more than that, we are all better individuals, better communities, and better societies when we adopt practices that include and involve everyone. Quality of life represents the end goal we are striving for when we put social inclusion into practice. Its core sub-concepts -life satisfaction, availability of opportunities, and freedom of choice in important areas of life across the lifespan -act as ways for us to enhance quality of life within the broader context of social inclusion. Both social inclusion and quality of life are sociallyconstructed concepts. That is, they do not have concrete meaning, but rather have a meaning that we ascribe to them. But all socially-constructed concepts evolve over time in response to changing thinking, values, and conditions, and it is for this reason that they need to be re-examined and tweaked from time to time so that they are relevant to the present times and conditions. This is precisely what several of the authors in this monograph have endeavoured to do, with the article by Bertelli, Francescutti, and Brown an explicit example. Philosophical concepts such as social inclusion and quality of life guide our thinking and sometimes our ac-tions, but two things that are highlighted in this monograph are essential to put them into practice effectively. First, international, country-specific, and disability organization policies that set out rights, entitlements, and systems of support for people with disabilities create the environment for a better life. The United Nations' 2006 Convention on the Rights of Persons with Disabilities (CRPD) [1] is one of the most important international documents that has ever emerged in this regard. Its 50 Articles combine to act as the standard against which all other national and organizational policy is judged. But rights are ideals and are not always acted on. Our challenge is to ensure that they are acted on to best effect for all, and, perhaps even more important, that they are acted on in person-centred ways that respond to the characteristics and needs of individuals. Second, for rights to be acted on effectively there needs to be commitment from governments, social service organizations, the education sector, and even the business sector. Applied rights need new models of organizing services, providing care, and allocating funds that respond to individual conditions and to changing social and economic conditions, and these need to be constantly generated and assessed. Genuine attempts to explore new models are represented by the contributions of Cappa et al., Varrucciu et al. and of Camoni and Venerosi, and are accentuated by the interesting alternative in social agriculture described by Borgi et al. Two areas of social functioning that are particularly important to applying rights, and the philosophical concepts that underlie them, are those that almost every citizen participates in to some degree: school and work. The article by Laghi stresses the importance of both, and it sets out some practical ways to apply rights and principles in a useful and inclusive way. It is individuals with NDID who experience both social inclusion and quality of life in a personal way, and the focus of our field needs to be kept on ensuring that they are able to do so. As such, the ultimate measures of success for all our efforts and endeavours are the an-
doi:10.4415/ANN_20_02_06 pmid:32567566 fatcat:mwuvlhw4ifgyfkvcc2g24v4kce