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Gillian Young; Maria Mathews; Leslie Meredith; Shannon L. Sibbald; Dana Ryan – Journal of Applied Research in Intellectual Disabilities, 2025
Background: In partnership with PHSS, a community care agency in London, Ontario, we describe the person-centred planning model. Person-centred plans (PCPs) are mandated in the community care sector and created annually through discussions with the person-supported, staff, family/friends and community members. PCPs are individualised, integrated…
Descriptors: Foreign Countries, Community Health Services, Planning, Models
Verstraten-Oudshoorn, Lisette M.; Coppus, Antonia M.; Klein, Mieke; Bakker-van Gijssel, Esther J. – Journal of Applied Research in Intellectual Disabilities, 2024
Background: A comprehensive multidisciplinary medical guideline for adults with Down syndrome is lacking in the Netherlands. In this study, we aim to explore parents' views on multidisciplinary care and identify which aspects of health care they find most important in the context of developing such a guideline. Method: This qualitative study used…
Descriptors: Parent Attitudes, Health Services, Down Syndrome, Medical Services
Ariana M. Mastrogiannis; Caren Steinway; Telmo C. Santos; Jack Chen; John Berens; Thomas Davis; Michelle Cornacchia; Jason Woodward; Ilka Riddle; Brittany Spicer; Charmaine Wright; Lee A. Lindquist; Sophia Jan – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood. Method: Caregivers (n…
Descriptors: Caregivers, Intellectual Disability, Developmental Disabilities, Needs
Peter Baker; Josephine Chishty-Collins; Nick Gore – Journal of Applied Research in Intellectual Disabilities, 2025
Background: The psychological wellbeing of staff who provide support to people with intellectual and developmental disabilities is one of the crucial factors in determining the quality of provision offered. An understanding of the current status and influencing variables of staff psychological wellbeing is considered to be vital in this respect.…
Descriptors: Adults, Intellectual Disability, Employees, Caregivers
Kats, Daniel J.; Skotko, Brian G.; de Graaf, Gert; Skladzien, Ellen; Hooper, Brian Takashi; Mordi, Rose; Mykhailenko, Tetiana; Buckley, Frank; Patsiogiannis, Vasiliki; Krell, Kavita; Haugen, Kelsey; Donelan, Karen – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Down syndrome is the most common liveborn genetic condition. However, there are no surveys measuring societal services and supports for people with Down syndrome. We developed a questionnaire so that initiatives could be targeted towards countries most in need of assistance. Method: We formed a geographically diverse group of…
Descriptors: Down Syndrome, Social Services, Questionnaires, Test Construction
Beth Tarleton; Katy Burch – Journal of Applied Research in Intellectual Disabilities, 2025
Background: This paper recognises that there has been a long history of research into support for parents with intellectual disabilities in England and a helpful approach to integrating adults with intellectual disabilities in society called "Valuing People." This focus has now faded. Method: The paper draws together findings from three…
Descriptors: Parents with Disabilities, Intellectual Disability, Adults, Social Services
Hussain, Rafat; Parmenter, Trevor; Wark, Stuart; Janicki, Matthew; Knox, Marie; Hayhoe, Nicola – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Although a 'person-centred focus' is a legislated objective for both aged-care and disability services sectors in Australia, evidence suggests limited translation into systems and practices due to entrenched silos. This paper proposes a Best Practice Framework to mitigate these silos. Methods: Mixed-methods research comprising key…
Descriptors: Foreign Countries, Older Adults, Health Services, Disabilities
Esther H. Bisschops; Noud Frielink; J. Clasien de Schipper; Carlo Schuengel; Petri J. C. M. Embregts – Journal of Applied Research in Intellectual Disabilities, 2025
Background: The Needs Assessment Framework (NAF) stimulates awareness of care staff to consider perspectives of clients with intellectual disabilities in decisions on involuntary care. We explored the effect of implementers' participation in a Virtual Community-of-Practice (VCoP) for designing implementation plans, on NAF implementation and staff…
Descriptors: Communities of Practice, Intellectual Disability, Social Services, Computer Mediated Communication
Marian E. J. Breuer; Esther J. Bakker-van Gijssel; Tim Pelle; Jenneken Naaldenberg; Geraline L. Leusink – Journal of Applied Research in Intellectual Disabilities, 2025
Background: This study aims to explore patients' and their caregivers' experiences with and expectations of a medical consultation with a specialised ID physician at an outpatient ID practice. Methods: Fifteen semi-structured interviews were conducted with patients and their caregivers. Interview topics concerned (1) ID physician's knowledge and…
Descriptors: Intellectual Disability, Specialization, Caregivers, Physician Patient Relationship
Collins, Josephine; Murphy, Glynis H. – Journal of Applied Research in Intellectual Disabilities, 2022
Background: The abuse of adults with intellectual and developmental disabilities in care services seems to be relatively common, although there are anecdotal suggestions that abuse may be predictable and preventable. Method: Evidence related to how abuse is detected and prevented within services was reviewed. Database and ancestry searches were…
Descriptors: Identification, Prevention, Antisocial Behavior, Adults
Watts, Paul; Kwiatkowska, Gosia; Minnion, Andy – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Multimedia Advocacy is the use of digital technology for people with intellectual disabilities as means of developing identities, being heard, connecting to family and care networks and, advocating for change. Methods: We explore principles and theories that underpin Multimedia Advocacy, mapping disciplinary approaches that have…
Descriptors: Multimedia Materials, Multimedia Instruction, Technology Uses in Education, Self Advocacy
Andrea Almas; Rosemary Lysaght; Susan Farrell; Lorrie Heffernan – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Engagement of individuals with an intellectual disability and their caregivers in health care has been highlighted as an essential factor in developing services that better meet client needs; however, few studies have focused on the engagement of individuals with a dual diagnosis (intellectual disability co-occurring with a mental…
Descriptors: Intellectual Disability, Caregivers, Health Services, Comorbidity
Anke J. E. De Veer; Hille Voss; Anneke L. Francke; Y. Man – Journal of Applied Research in Intellectual Disabilities, 2024
Background: To improve the quality of palliative care, six evidence-based tools were implemented in 10 care services specialised in care for people with intellectual disabilities. Contextual differences were taken into account by using a participatory action research approach. Method: The RE-AIM framework (Reach, Effectiveness, Adoption,…
Descriptors: Intellectual Disability, Intervention, Program Effectiveness, Health Services
Lewis, Sunali B.; Florio, Tony; Srasuebkul, Preeyaporn; Trollor, Julian N. – Journal of Applied Research in Intellectual Disabilities, 2020
Background: Can disability support services (DS) facilitate access to mental health services (MHS) for people with intellectual disability? This study utilized 10 years of data from 6,260 persons in NSW who had received DS and specific MHS to quantify the relationship between DS utilization and MHS utilization in adults with intellectual…
Descriptors: Health Services, Mental Health Programs, Adults, Intellectual Disability
Ion, Sandica; Lightfoot, Elizabeth – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Much of the research and program innovation regarding future planning for adults with intellectual disabilities has occurred in countries with well-developed disability service systems. This study explored how family caregivers planned for their adult children's future caregiving needs in Romania, a country with a limited array of…
Descriptors: Caregiver Attitudes, Planning, Adults, Intellectual Disability