Care and support for older people with intellectual disabilities beyond the pursuit of ageing ‘in place’: towards constructing a space to be(long)

Abstract

ABSTRACTWhereas population ageing has been a much debated issue over the last decades, the political and scientific awareness of the longevity of adults with intellectual disabilities is considered relatively new. When the situations of older people with intellectual disabilities are coming into focus, attention has especially been drawn to medical aspects or to expected challenges of their ageing for health and social service providers. In that vein, a prominent yet rather wicked issue has been the question whether either disability care or elderly care services are the right place to meet their needs. This article discusses findings of a qualitative research study that aimed to reconstruct and investigate 10 care trajectories of ageing people with intellectual disabilities. Based on open interviews with the individuals themselves and with significant others from their formal and informal networks, we identified mechanisms in society that allow or deny older people with intellectual disabilities access to certain care settings or welfare provision. Moreover, we discovered concerns, interests and aspirations that are often left unseen. This shows the necessity to go beyond the debate of ‘ageing in (or out of) place’, and challenges us to create opportunities and strategies to create ‘a space to be(long)’.ABSTRACTTerwijl de vergrijzing van de algemene bevolking de afgelopen decennia een gekend onderwerp is van maatschappelijk debat, is het politieke en wetenschappelijke bewustzijn van de stijgende levensverwachting van volwassenen met verstandelijke beperkingen relatief nieuw. Wanneer de situatie van oudere personen met verstandelijke beperkingen onder de aandacht komt, wordt de focus vooral gelegd op medische aspecten of op verwachte uitdagingen van hun veroudering voor de gezondheidszorg en sociale dienstverlening. Een prominente, maar complexe kwestie in deze context is de vraag of eerder de ouderenzorg ofwel de gehandicaptenzorg het best geschikt is om aan hun behoeften te voldoen. Dit artikel bespreekt de bevindingen van een kwalitatief onderzoek waarin de zorgtrajecten van 10 ouder wordende personen met verstandelijke beperkingen gereconstrueerd en onderzocht werden. Op basis van open interviews met de betrokkenen zelf en met relevante actoren uit hun formele en informele netwerk, identificeerden we mechanismen in de samenleving die ouderen met verstandelijke beperkingen toegang geven of ontzeggen tot bepaalde zorginstellingen of welzijnsvoorzieningen. Bovendien ontdekten we bekommernissen, interesses en aspiraties die veelal onbelicht blijven. Dit toont de noodzaak om voorbij te gaan aan het debat over toegang krijgen tot een bestaande plaats, en daagt ons uit om op zoek te gaan naar mogelijkheden en strategieën om een plaats te creëren om te bestaan, ook op oudere leeftijd.KEYWORDS: Quality of lifebelongingintellectual disabilitieselderlyageing in placeTREFWOORDEN: kwaliteit van levenerbij horenverstandelijke beperkingouderenter plaatse ouder worden Disclosure statementNo potential conflict of interest was reported by the author(s).Notes1 More recent policy plans are focusing on the introduction of an adjusted scaling instrument (BelRAI) that should allow a more ‘global assessment of a person’s physical, cognitive, psychological and social care and support needs’ (Beke, Citation2019, p. 21 – Policy note on Welfare, Public health, family and poverty reduction 2019–2024).Additional informationNotes on contributorsTineke SchiettecatTineke Schiettecat works as a postdoctoral researcher at the Department of Social Work and Social Pedagogy (Ghent University). She is also lecturer at the department of Social Educational Care Work, and affiliated as a researcher to the EQUALITY Research Collective and eCO-CITY (HOGENT University of Applied Sciences and Arts). Her research interests involve qualitative research about social work and welfare rights in relation to issues of poverty, disability and age.Jorrit CampensJorrit Campens obtained a master's degree in nursing and midwifery and, in 2015, started working at the HOGENT University of Applied Sciences and Arts as a lecturer in the bachelor's program in nursing and as a researcher focusing on older adults with intellectual disabilities and students' attitudes toward older people. Since 2020, Jorrit has also been working at Vrije Universiteit Brussel as a doctoral student contributing to the Digital Ageing project. His work is centered around the development of typologies of internet (non-)users among older adults.Griet RoetsProf. dr. Griet Roets is Professor at the Department of Social Work and Social Pedagogy at Ghent University. Her work focuses on social work, citizenship and social rights, intersections of poverty, disability, gender, and age, and the way in which social services and social workers carry or critically reflect on and question broader societal developments. Her research and teaching interest includes qualitative and interpretative research, and dimensions of research ethics.Nico De WitteProf. dr. Nico De Witte is one of the founders of the elderly needs studies and has been exploring the intersections and needs of elderly people living in Belgium and several other European Countries since 2002. He is currently a member of the faculty Psychology and Adult Educational Sciences at Vrije Universiteit Brussel and of the Faculty of Health Care, HOGENT University of Applied Sciences and Arts. His research interests are frailty, quality of life, quality of care, loneliness in later life, the added value of digital applications for the elderly in their daily lives and in healthcare provision, etc.Joan LesseliersJoan Lesseliers is a lecturer at the Department of Social-Educational Care Work and researcher at the Research Centre - Substance Use and Psychosocial Risk Behaviours (SUPRB), both at HOGENT University of Applied Sciences and Arts.Ilse GoethalsIlse Goethals is lecturer at the department of Social Educational Care Work, and researcher at the EQUALITY Research Collective, both situated within Ghent University of Applied Sciences and Arts. She is also an affiliated researcher at Ghent University, department of Special Needs Education. She has experience in applied scientific research which mainly focusses on optimizing the quality of life of socially vulnerable populations by analysing treatment processes (on an organisational-, system-, care providers- and/or client-level) and assessing implementation of treatment interventions.