In reflecting on the title of the special issue: Inclusive Research: A road less or more well-travelled, this paper reviews the strengths of inclusive research that have augmented the global knowledge about the lives of people with intellectual disabilities across the lifespan. The successes of inclusive research are outlined with the respective ongoing individual challenges discussed. Authors will draw upon their own experiences of inclusive research, together with the seminal and current literature, as well as the dialogue between them. The conclusions of the article are in the form of recommendations aimed at increasing the traffic on the road of inclusive research through: 1. expanding its purpose and parameters across all forms of disability research; 2. developing systems for sustaining inclusive research as a funded model; 3. creating capacity to enable people with intellectual disabilities to be employed as researchers directing research projects; and 4. establishing bridges and crossroads with policy and practice through its findings.
This article explores how people with intellectual disabilities can be more involved in evaluating and regulating the services they use and the quality of their lives. Traditionally, these evaluations have been performed by professionals, but we argue that people with lived experience of intellectual disabilities bring unique insights and should be part of the process. The idea builds on ‘inclusive research’, where people with intellectual disabilities are not just subjects of research but active researchers. We use the term ‘inclusive evaluation’, to describe the active engagement of people with intellectual disabilities in inspecting and assessing services to ensure they meet standards and respect human rights. The paper describes a small exploratory study involving interviews with regulators, professionals, and people with intellectual disabilities across Ireland, Northern Ireland, Australia, and New Zealand who had been involved in inclusive evaluations. It found strong support for it, highlighting benefits such as greater trust and empathy during evaluations with users of services, more meaningful feedback for service providers, and increased confidence and employment opportunities for evaluators with disabilities. However, challenges remain, including funding and fair pay for the engagement of people with intellectual disabilities, training opportunities that meet the support needs of all stakeholders, and changing the cultural attitudes in support services that underestimate the abilities of people with intellectual disabilities. Steps to overcome these challenges are proposed such as piloting inclusive evaluation programmes, providing inclusive evaluation training to all involved, and lobbying governments to fund these roles. We conclude with a proposed implementation framework and a set of guiding principles that will nurture a spirit of inclusion and respect in service evaluations.