Measurable Indicators of CRPD for People with Intellectual and Developmental Disabilities within the Quality of Life Framework

Abstract

This article proposes the quality of life (QOL) construct as a framework from which to develop useful indicators to operationalize, measure, and implement the Articles of the Convention on the Rights of Persons with Disabilities (CRPD). A systematic review of the scientific literature on people with intellectual and developmental disabilities (IDD) was carried out, with the aim of identifying personal outcomes that can be translated into specific and measurable items for each of the CRPD Articles aligned to the eight QOL domains. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, the systematic review was conducted across the Web of Science Core Collection, Current Contents Connect (CCC), MEDLINE, KCI-Korean Journal Database, Russian Science Citation Index and SciELO Citation Index, for articles published between 2008 and 2020. A total of 65 articles focusing on people with IDD were selected. The results were grouped into four broad categories: conceptual frameworks used to monitor the CRPD; instruments used to assess the rights set out in the CRPD; recommendations on the use of inclusive research; and indicators or personal outcomes associated with specific rights contained in the CRPD.

A shift in perspective on secondary disabilities in fetal alcohol spectrum disorders

“…(7) material well-being; and (8) physical well-being. A discussion of measurable indicators of QOL, aligned with the rights of persons with disabilities, is available and could be used to guide multiple intervention ideas, especially for older individuals with FASD, and their families and service systems (Gómez et al, 2020). This could be a useful resource, as strengths-based interventions have increasingly been called for in the field of FASD (e.g., Flannigan et al, 2020).…”

“…Briefly put, the QOL conceptual model used to drive service delivery for persons with IDD consists of eight domains: (1) rights; (2) self‐determination; (3) social inclusion; (4) interpersonal relationships; (5) personal development; (6) emotional well‐being; (7) material well‐being; and (8) physical well‐being. A discussion of measurable indicators of QOL, aligned with the rights of persons with disabilities, is available and could be used to guide multiple intervention ideas, especially for older individuals with FASD, and their families and service systems (Gómez et al, 2020). This could be a useful resource, as strengths‐based interventions have increasingly been called for in the field of FASD (e.g., Flannigan et al, 2020).…”

Paternalism to empowerment: all in the eye of the beholder?

“…The answer to the question of fidelity to purpose matters because policy reforms can degrade over time, or even render supposed benefits fictional. Some obligations in the CRPD arguably do lend themselves to quantitative measures of change (for a systematic review: Gómez et al 2020), including some aspects of support for decision-making (Douglas, Bigby, and Smith 2020). However, the respective degrees of paternalism or empowerment impacting on the decision-making by people with a cognitive impairment relies on highly subjective interpretation of data about context, support and participation, as well as interrogation of imprecise and contestable concepts.…”

Community Living, Intellectual Disability and Extensive Support Needs: A Rights-Based Approach to Assessment and Intervention

“…It is therefore essential to monitor the implementation of the Convention through the use of precise instruments, assessing how the support provided to people with ID and extensive support needs ensures compliance with the rights outlined in this international treaty [ 8 , 13 , 50 ]. In this regard, and in relation to the right to living independently and being included in the community that concerns this study (Article 19 of the Convention), it should be noted that living in community settings is a necessary but not sufficient condition to achieve the goal of inclusion of people with ID [ 45 ].…”