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.

The purpose of this Special Issue on inclusive research is to capture international insights into the following questions: “How far have we come

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.

Background: Australia's National Disability Insurance Scheme (NDIS) funds individualised supports to increase choice and control. The relationship between NDIS individualised funding, outcomes for wellbeing and exercising choice and control for people with intellectual disability has been unclear.Method: Adult NDIS participants with intellectual disability (N = 62) completed a longitudinal survey with validated instruments exploring personal wellbeing and choice.Findings: Personal wellbeing scores were generally positive, with the mean comparable to that found for a similar population over a decade ago. High choice and control were evident for most individuals over everyday matters, but not key life decisions. Living environment and physical and/or mental and emotional health status were associated with the level of satisfaction with personal wellbeing and everyday choice and control.Conclusions: There is need to better support people with intellectual disability to exercise choice and control over key life decisions and to address disparities in choice and wellbeing associated with living environment, physical and mental and emotional health and future security.

(2020). “No researching about us without us as decision makers.” Commentary on “Are individuals with intellectual and developmental disabilities included in research? A review of the literature” (Jones, Ben-David, & Hole, 2019). Research and Practice in Intellectual and Developmental Disabilities. Ahead of Print.

Background: This study aimed to evaluate the everyday ways that individuals with mild and moderate intellectual disabilities exercise choice and control. Method: Photovoice with 17 adults with mild to moderate intellectual disability who were receiving individual funding was conducted. Focus groups were held to review the photos. Findings: While some participants directed the activity they had chosen, others appeared to have been restricted to activities planned and organised by the service provider. Many participants took photos of locations rather than activities. In these cases, the locations they photographed represented their identity or something that was personally meaningful to them. This illustrated the individuals' power to create spaces and/or travel to places that are important to them. Conclusions: It is important to understand how certain activities facilitate choice and control. A critical examination of real choice compared with generic activities framed as choice continues to be needed.