Transitions in lives of people with intellectual disability

It was written by: The word transition means a change from: Articles in this special issue: Authors from many countries wrote an article for 3 self-advocates also tell their stories: We have divided our editorial issue on transitions the lives of people with intellectual disability into four parts. first three sections focus gaps applied research that attempted to address. Specifically, (i) articles broaden understanding beyond those traditionally explored literature, and (ii) are grounded voices disability. last section presents narratives Australia sharing diverse experiences different they experienced. Transitions critical timely topic. COVID-19 pandemic brought challenges specific had face, often quite abruptly. However, there inequity when it came supports handle these transitions, such as face-to-face service provision online services or seeing general practitioner using Telehealth connect them, name just two. These were experienced by unprecedently short time during highlighted existing systemic inequities, living low socio-economic circumstances poverty, thus having limited access internet mobile devices one-to-one support. What do we mean “transitions” issue? According Merriam-Webster Dictionary, meaning noun is very diverse, including (but not to) (shift, passage) one state (place, subject) another; period (phase) which happening; (iii) something links (subject, place) another. In literature disability, two meanings—a (e.g. residential setting community living) supporting high school post-school life via planning preparation period) (https://www.merriam-webster.com/dictionary/transition). mainly focuses school-linked postschool (Pallisera et al., 2014; Salt 2019). primarily on: assessment (and with) students (Carter Johnson 2020; Wilczenski 2017); evidence-based (or research-based) practices (Kyzar 2016; Rowe 2021); impact self-determination skills' development successful (Shogren 2018); (iv) students/young severe Jacobs al.). School-linked most frequently parents' (Ellman Malapela 2020), teachers' (Cumming psychologists' (Talapatra 2019), other professionals' 2014) perspectives, while studies presenting voice limited. While substantial body about (as evidenced above), lifespan remain unexplored. For example, early childhood (McIntyre 2006; Wilder & Lillvist, 2021), primary secondary Strnadová 2016) under-explored. Similarly, vertical common, been research. include, mainstream schools visa versa (though less common). Moving life, becoming older adult (Strnadová, retirement (Wilson 2010), post-parental care (Garnham 2019) deserve more attention. Yet, so stories presented at editorial). between employment types positions, unemployment versa), parent, new communities, few, need attention researchers, policy makers practitioners. Most Global North (Australia, UK, USA), some publications reporting countries, Botswana (Malapela 2020) South Africa ethnic minorities (e.g., Chinese Vietnamese parents USA - Lo Bui, 2020). More needed outside order better understand culturally, ethnically, geographically, historically contexts. include researched life), but go spaces artist. Indeed, phase space. Further, reflect culturally contextually relevant. reality made around world vary great deal, considering inclusion issue, placed greater importance hearing across wider portion than determining what “appropriate” perspectives. believe important recognition irrespective settings be adequately recognised supported. Our includes addressing populations disability: (Jacobs al.), dementia (Sheth al.) (Andriana Evans.; Moreover, international perspectives (Strnadová Scott Watfern), Indonesia Evans), Mexico (Rubio-Jimenez Kershner), Norway (Wass (Mupaku UK (Chapko Bayliss Fish Morgan, Easy Read Dorota Chapko, Pedro Rothstein, Lilly Cook, Pino Frumiento Robyn Steward describe Heart n Soul inclusive team “Hub” physical space pandemic. Based 28 meetings Zoom, shared type highlighting role trust mutual respect managing transition. full format, accompanied video members’ reflections how felt moving working online. “Jargon Buster” excellent article, explaining all complicated words used accessible way. Kraig Bayliss, Fran Mooney, Chrissie Timmins, Samantha English, Edith King Nazia Rafique Building Bridges Training provide Response appreciating Chapko al. good story experience. however, pointed out seems changing home project asked information things found out. interview team, allowing readers learn details study. Lisa Chloe Watfern discuss Lisa’s story, focussing her creative practice within it. artist life-changing. Her art allowed reflecting significant changes loss mum, yet compelling Rebecca Hannah Morgan explore relationships secure inpatient units staff, back community. Their highlight positive staff residents units, beneficial both groups essential process. They soft skills, trust, successfully. Iva Strnadová, Julie Loblinzk Joanne Danker study sex education life. interviews ten girls girls’ perceptions education. barriers experience, topics incorporated talked being included Individual Learning Plan (ILP) consulted wished education, potentially leading reduced opportunities develop sense agency skills. Excluding ILP contradicts “collaborative curriculum process” according appropriate options adjustments must involve student themselves. Elga Andriana David Evans examine voiced children Yogyakarta, Indonesia, who multiple schools. provides innovative arts-informed through nondisabled peers provided experiences. findings particularly relevant build Paula Jacobs, Ethel Quayle, Heather Wilkinson Ken MacMahon report discussions families profound professionals worked transitions. theme surfaced matter deal extensive support needs domains. decisions lives. Wendy Mupaku, Adrian van Breda Berni Kelly studied young grown up transitioning, age 18, This process called “care-leaving” Africa, reports six adults going speak feelings disruption difficulties mental health transition, deepening family members. only reminder can times anxiety stress people. Ana Luisa Rubio-Jimenez Ruth Kershner turned issues researchers like them value relative independence associated challenges. degree tools meet supported growth self-determination. Alisa Jordan Sheth, Joy Hammel, Tamar Heller, Jessica Kramer, Susan Magasi Akemi Nishida women dementia. involved work environments, recreation hobby activities, relationships. women’s inform others similar stages, emphasis friendships, well peer networks ensuring Sofie Wass, Mugula Chris Safari, Silje Haugland, Hans Olav Omland Elisabeth Holen-Rabbersvik interviewed finding sheltered employment, option them. Participants mixed meaningful work. spoke fact social aware experience did topic issue. Hopefully, here will impetus thinking why practice. As mentioned beginning editorial, done levels. First, typically parents', rarely perspective conducted disability; therefore, various Furthermore, co-authored Second, opens few Australia, demonstrate research, Third, co-edited academics self-advocate continents (Australia America) fully embracing (Zoom, Workplace, Facetime, emails). necessary due (see Figure 1). generally understood where stages occur. nevertheless listen attentively telling gain in-depth complex are—they truly ever-evolving—and much succeed. strength-based acknowledging inter-dependency characteristics human beings, gender, situation, race religion. Thus, stories, editors, Loblinzk, fellow Self Advocacy Sydney, Inc. (Australia). I am woman Australia. children, independently twenties. middle Sydney (SAS) 34 years. Now paid doing volunteer SAS Executive Board. SAS’ sub-committees, focussed developing newsletter activities clients. disabilities (Australia) help become Advocates providing clients information, training client getting support, anymore. Board, Professor disabilities. my partner Sydney. 2 hours area, Hunter Valley region. My wedding me Matron Honour (I pleased). better, pleased changes. grew suburban Windsor NSW, mother father me. guess slightly unaware would happen after left little later. September 2017, graduated Year 12 gained certificate. thankful witness graduating she sick. events followed 2017 life-changing person 5 6 months before got job assisting treatments illness. January 2018, Mum decided touch ability Windsor. Even joined options, long endless even stepped foot job. February 2018 crack pub cleaner Clarendon Tavern. remember day cleaner, smell cigarettes betting room, overall ruggedness pub. enjoy anticipated. ringing consultant next saying “Angelo doesn’t job, now?” quit Pub said “I know place NOVA apparently jobs.” Late mum Richmond enquired joining. application almost instant, days later, employment. weeks, office jobs Job shortly approached spot available reading cinema Rouse Hill Town Centre. interview, big line cinema. standing shaking sweating, I’d never worried stuff up. finally turn don’t contact email soon. A week went unsuccessful. shame, wasn’t giving although think Finally March McDonalds Richmond. manager comfortable saying. That received bit uniform hat, belt apron, still have. Two weeks started cook all, nobody expecting employees caught surprise. ok want you deep fryer. stunned mullet knowing doing. Eventually, shown properly all. After day, wanted give together. sat down gave advice There trouble whole bad managers enough franchise. How lasted really surprised me, shame. ended leaving without any troubles. late June July phone call Uncle position soon heard this, music ears. accepted. news look face smile ear ear. On 10 coordinator greeted Julie. organised explained everything could understand. Immediately, place. Before employee Client Action meeting board And then August officially employed now three-and-a-half years counting. Unfortunately, passed away 14 2019. inspiration mother. I’m sure proud man raised. mother’s passing extraordinary. grateful day. joining step someone because showed capable things. Everyday learning, yes, make mistakes thing every minute loving 2018. has helped take business admin certificate 3. To extremely chance grow person. happy organisation helps train, hope part future known When own months, move rollercoaster breakdown caused Then, another moved later controlling Also, couple in, hell painful. month.