This article describes a systematic approach to enhancing the personal well-being of children and adolescents with intellectual or closely related developmental disabilities. The article incorporates international trends in disability-related policies and practices and proposes a quality of life framework for implementing the approach, which consists of input, throughput, output, and outcome components. Guidelines for implementing the approach are presented, along with an example of its use.

Accessible summary The research was conducted by a team of researchers. Some of the researchers have experience of living with a disability. The researchers created training for other research teams that include experts by experience. The training has six parts. To decide what happened in the training, the researchers read articles and asked the research teams they trained about what problems they had and what they wanted to know about. The article tells why and how the training was made. It also says what training is needed for researchers with and without disabilities to learn and work together in a way that feels safe and useful. In developing and providing the training, it was very crucial to search for a safe and welcome space for all people involved (Figure 8). As we don't know what is “safe” for the other, this means we have to search together, in respect and with enough time to get to know each other. Abstract BackgroundResearchers collected questions and needs for training from 10 inclusive research projects in the Netherlands. Based on literature research and the information collected, six training modules were developed. Researchers sought to learn how to develop and provide training and coaching to inclusive teams on organising collaboration in the different stages of their research projects. MethodAn iterative training development process to support inclusive research projects was initiated by a research duo backed by a transdisciplinary team including researchers, trainers and designers. Some members of the team have experiential knowledge based on living with a disability. ResultsLiterature research resulted in four guiding theories, including Universal Design for Learning, Derrida's concept of Hospitality, post‐materialist theory looking at agency as an assemblage, and Romiszowski's model situated within Instructional Design theory. Insights gained during development of the training modules are documented with text, figures and vignettes. A core finding was the need to add “Level Zero” to Romiszowski's model: a collective term created for all the interacting issues trainers had to consider because of research group diversity. ConclusionsHospitality formed the heart of “Level Zero.” Creating a failure‐free space for learning is an important pre‐condition for the development and organisation of training. Training can inspire exploration and reflection on collaboration and can illuminate how to conduct research within transdisciplinary teams. Essential practices included working with nonverbal research methods, as these are (more) fit for purpose when including the knowledge of experts by experience and incorporating practice‐ and stakeholder‐based knowledge.

ObjectivesQuality of life (QoL) is a multi-dimensional phenomenon composed of core domains that are influenced by personal characteristics, values, and environmental contributions. There are eight core domains of QoL aligned with both the United Nations and the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD). The Personal Outcome Scale (POS), is a semi-structured self and proxy instrument that specifically measures these aspects of QoL for people with an intellectual disability.MethodsA total of 85 people with an intellectual disability and their primary keyworker (n = 85) took part in this study. A convenience sample recruitment strategy was employed to recruit participants during the calendar year from January–December 2020. Participants completed the self-report and proxy POS, and clinic-demographic data was also considered.ResultsQoL is higher in those who have a dedicated service planner and also for those with a less severe to profound disability. People who were in gainful employment reported significantly higher QoL as did those availing of outreach and residential services, over and above local services.ConclusionsThis research shows that there are distinct and specific factors that relate to QoL for people with an intellectual disability community-based services in Ireland. Future research could aim to investigate these longitudinally, and specifically how QoL relates to cognitive and functional outcomes.

In a person-centered support system for people with intellectual disabilities, there should be an alignment between the wishes and goals of a person, his or her support needs, the support given, and his or her quality of life as outcome. Thus far, quite some research has been done on measuring support needs and measuring personal outcomes. In this article the focus is on the actual support to people with intellectual disabilities. It is argued that there should be an emphasis on 1) the application of evidence-based supports, 2) based on evidence-based measurement of support needs, 3) in which the outcomes are evidence-based assessed quality of life-related personal outcomes, 4) within a value-based framework, and 5) in a process of methodological sound Individual Supports Planning. A value-based model for evidence-based supports and interventions in a support methodology is presented.