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Journal articles on the topic 'Parents of people with severe and profound intellectual disabilities'

Author: Grafiati

Published: 2 June 2025

Last updated: 31 July 2025

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1

Peeters, Wilfried. "Hoe ondersteun ik een matig, ernstig of diep verstandelijk beperkt kind met autisme: een praktische leidraad." Wetenschappelijk Tijdschrift Autisme 23, no. 4 (2024): 2–17. https://doi.org/10.36254/wta.2024.4.01.

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Children with autism and moderate, severe or profound intellectual disabilities are in need of high levels of care. The quality of their lives relies heavily on the goodness of fit between the provided care and their unique mode of experiencing the world, other people and themselves. This article offers a practical guide for parents, teachers and professional caretakers on how to give these children the support they need.

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2

Novak, Metka, and Majda Končar. "Role of gender and age in the cooperation between parents of people with intellectual disabilities and professional staff in care centres." Journal of Health and Rehabilitation Sciences 1, no. 1 (2023): 22–35. https://doi.org/10.33700/jhrs.1.1.39.

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<strong>Introduction:</strong> understanding factors that influence the cooperative relationship between parents of people with intellectual disabilities and professional staff comes from understanding how parents and staff function and, on this basis, from understanding their abilities and skills reflected in their interactions and cooperation. This paper presents some results of a broader study which examined: The<strong> aim </strong>or research question is how the level of the cooperative relationship between the parents of persons with moderate, severe and profound learning

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Novak, Metka, and Majda Končar. "Role of gender and age in the cooperation between parents of people with intellectual disabilities and professional staff in care centres." Journal of Health and Rehabilitation Sciences 1, no. 1 (2022): 1–14. http://dx.doi.org/10.33700/jhrs.1.1.39.

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Introduction: understanding factors that influence the cooperative relationship between parents of people with intellectual disabilities and professional staff comes from understanding how parents and staff function and, on this basis, from understanding their abilities and skills reflected in their interactions and cooperation. This paper presents some results of a broader study which examined: The aim or research question is how the level of the cooperative relationship between the parents of persons with moderate, severe and profound learning disabilities and the professional staff of Train

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4

Heister, Noemi, Peter Zentel, and Stefanie Köb. "Participation in Everyday Leisure and Its Influencing Factors for People with Intellectual Disabilities: A Scoping Review of the Empirical Findings." Disabilities 3, no. 2 (2023): 269–94. http://dx.doi.org/10.3390/disabilities3020018.

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Background: Participation is often defined as taking part and being included in different areas of life. Leisure represents an important area of life for all people. People with disabilities have the right to experience leisure time in a self-determined manner. They have the right to participate in leisure activities on an equal basis with others. Due to various influencing factors, people with intellectual disabilities, especially those with severe to profound intellectual disabilities, are at risk of decreased participation. This is alarming because participation in leisure activities reflec

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Wissing, Maureen B. G., Aurora M. Ulgiati, Johannes S. M. Hobbelen, Deyn Peter P. De, Aly Waninge, and Alain D. Dekker. "The neglected puzzle of dementia in people with severe/profound intellectual disabilities: a systematic literature review of observable symptoms." Journal of Applied Research in Intellectual Disabilities 35, no. 1 (2021): 24–45. https://doi.org/10.1111/jar.12920.

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<strong>Abstract</strong><i>Background: </i>Dementia is increasingly prevalent in people with severe/profound intellectual disabilities. However, early detection and diagnosis of dementia is complex in this population. This study aimed to identify observable dementia symptoms in adults with severe/profound intellectual disabilities in available literature.<i>Method:</i> A systematic literature search was conducted in PubMed, PsycINFO and Web of Science with an exhaustive search string using a combination of search terms for severe/profound intellectual disabilities and dementia/ageing.<i>Resul

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6

Dantata, Prof Yau Musa, and Dr Shamsuddeen Idris Rimingado. "Safety Measures for Children with Severe and Profound Intellectual Disabilities: A Guide for Parents and Caregivers." Journal of Nursing Research,Patient Safety and Practise, no. 36 (November 20, 2023): 42–47. http://dx.doi.org/10.55529/jnrpsp.36.42.47.

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Providing appropriate safety measures by parents and caregivers are integral part of nurturing children with severe and profound intellectual disabilities. In line of this, the present article highlighted the concept of intellectual disabilities, its classification and safety measures needed to be taken for proper nurturing.

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Nicholson, Clare, W. Mick L. Finlay, and Steven Stagg. "Forms of resistance in people with severe and profound intellectual disabilities." Sociology of Health & Illness 43, no. 3 (2021): 642–59. http://dx.doi.org/10.1111/1467-9566.13246.

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8

Thompson, Christina L., and Andrew Reid. "Behavioural symptoms among people with severe and profound intellectual disabilities: A 26-year follow-up study." British Journal of Psychiatry 181, no. 1 (2002): 67–71. http://dx.doi.org/10.1192/bjp.181.1.67.

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BackgroundVery little is known about the natural history of challenging behaviour and psychiatric disorder in people with severe and profound degrees of intellectual disability.AimsTo clarify the natural history of challenging behaviour and psychiatric disorder in this population through a long-term prospective cohort study over a 26-year period.MethodOne hundred individuals with severe or profound intellectual disability were randomly selected in 1975. Their behaviour was recorded through carer and psychiatrist ratings using the Modified Manifest Abnormality Scale of the Clinical Interview Sc

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Watson, Anna Freeman, José Blanco, Patricia Hunt-Hurst, and Katalin Medvedev. "Caregivers' Perceptions of Clothing for People with Severe and Profound Intellectual Disabilities." Perceptual and Motor Skills 110, no. 3 (2010): 961–64. http://dx.doi.org/10.2466/pms.110.3.961-964.

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10

Delgado-Casas, C., J. I. Navarro, R. Garcia-Gonzalez-Gordon, and E. Marchena. "Functional Analysis of Challenging Behavior in People with Severe Intellectual Disabilities." Psychological Reports 115, no. 3 (2014): 655–69. http://dx.doi.org/10.2466/15.pr0.115c26z4.

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Challenging behaviors exhibited by individuals with developmental disabilities often hinder the acquisition of academic, social, and life skills. Functional analysis has been useful for assessing challenging behavior in various settings. The purpose of this study was to implement an operant methodology for recognizing the functional properties of challenging behavior in people with intellectual disabilities. Four adults diagnosed with profound intellectual disability received assessment under several experimental conditions using a functional analysis methodology: social attention as positive

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11

Skora, Helena, Bob Pillay, and Ishwar Desai. "Curricular Skills Valued by Parents of Children Attending Special Developmental Schools in Victoria." Australasian Journal of Special Education 25, no. 1-2 (2001): 4–16. http://dx.doi.org/10.1017/s1030011200024829.

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The need for parental involvement in developing effective programs for children with disabilities is highlighted in the conceptual and research literature as well as in the legislation and policies of a number of countries. The present study was undertaken to investigate the curricular skills valued by parents of children with moderate to severe/profound intellectual disabilities attending Special Developmental Schools in Victoria, Australia. The study examined whether a significant relationship existed between selected background factors and the value parents placed on particular curricular s

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12

Neyroud, Marion C., and Christopher J. Newman. "Parents’ Perspectives on Adaptive Sports in Children with Profound Intellectual and Multiple Disabilities." Children 8, no. 9 (2021): 815. http://dx.doi.org/10.3390/children8090815.

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Children with profound intellectual and multiple disabilities (PIMD) need adaptations to participate in sports and it is more difficult for them to access these activities. We investigated the effects of adaptive sports in children with PIMD as perceived by their parents. The parents answered a postal questionnaire exploring the effects of adaptive sports during the 3 days following an activity. The questionnaire explored twelve domains of children’s daily lives, such as sleep and appetite. We calculated a composite score, including all of these domains, to assess whether the children globally

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Luijkx, J., A. A. J. van der Putten, and C. Vlaskamp. "Time use of parents raising children with severe or profound intellectual and multiple disabilities." Child: Care, Health and Development 43, no. 4 (2017): 518–26. http://dx.doi.org/10.1111/cch.12446.

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14

Álvarez Aguado, Izaskun, Vanessa Vega Córdova, Maryam Farhang, Leyre Álvarez Aguado, Félix González Carrasco, and Herbert Spencer González. "Quality of Life of Elderly People with Severe Intellectual Disabilities in Chile." Revista Ciencias de la Salud 21, no. 3 (2023): 1–17. http://dx.doi.org/10.12804/revistas.urosario.edu.co/revsalud/a.11646.

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Introduction: Currently, the concept of quality of life (QoL) is key to defining health policies aimed at the population with intellectual disability (ID). Most QoL studies in this field have been limited to people with ID with higher levels of functioning. This has resulted in little interest in evaluating QoL interventions in people with ID and high support needs, affecting their general well-being and conditioning the care received. This study seeks to explore the QoL levels of people with severe and profound ID, and to examine their differences according to some variables. Material and met

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15

Hayes, S., B. McGuire, M. O'Neill, C. Oliver, and T. Morrison. "Low mood and challenging behaviour in people with severe and profound intellectual disabilities." Journal of Intellectual Disability Research 55, no. 2 (2010): 182–89. http://dx.doi.org/10.1111/j.1365-2788.2010.01355.x.

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16

van Timmeren, E. A., A. Waninge, H. M. J. van Schrojenstein Lantman-de, A. A. J. van der Putten, and C. P. van der Schans. "Patterns of multimorbidity in people with severe or profound intellectual and motor disabilities." Research in Developmental Disabilities 67 (August 2017): 28–33. http://dx.doi.org/10.1016/j.ridd.2017.05.002.

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17

Wissing, Maureen B. G., Johannes S. M. Hobbelen, Deyn Peter P. De, Aly Waninge, and Alain D. Dekker. "Dementia in people with severe/profound intellectual (and multiple) disabilities, and its natural history." Journal of Mental Health Research in Intellectual Disabilities 17, no. 1 (2023): 1–28. https://doi.org/10.1080/19315864.2023.2240734.

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<strong>Abstract</strong><i>Introduction: </i>Although the prevalence of dementia increases among people with severe/profound intellectual (and multiple) disabilities (SPI(M)D), dementia in people with SPI(M)D is not yet fully understood. Therefore, this study aimed to characterize the natural history of dementia in people with SPI(M)D, in particular, the prevalence and time of onset of dementia symptoms.<i>Methods:</i> An explorative retrospective review of clinical records was conducted for people with SPI(M)D without dementia (<i>n</i> = 103), with questionable dementia (<i>n</i> = 19), and

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Dekker, Alain D., Maureen B. G. Wissing, Aurora M. Ulgiati, et al. "Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs." Journal of Applied Research in Intellectual Disabilities 34, no. 6 (2021): 1602–17. https://doi.org/10.1111/jar.12912.

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<strong>Abstract</strong><i>Background: </i>Differentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Moreover, studies on observable dementia symptoms are scarce. This study examined (a) the relevance of dementia diagnosis, (b) observable symptoms and (c) training/information needs.<i>Methods:</i><strong> </strong>Four explorative focus groups were held with care professionals and family members who have experience with people with severe/profound intellectual (and multiple) disabilities (≥40 years) and

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Wissing, Maureen B. G., Roos Dijkstra, der Wal Ina A. Van, et al. "Dementia in people with severe/profound intellectual (and multiple) disabilities: Applicability of items in dementia screening instruments." Journal of Mental Health Research in Intellectual Disabilities 15, no. 4 (2022): 322–63. https://doi.org/10.1080/19315864.2022.2111737.

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<strong>Abstract</strong><i>Introduction: </i>Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments.<i>Methods: </i>Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in D

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20

Lancioni, Giulio E., Nirbhay N. Singh, Mark F. O’Reilly, et al. "Use of everyday technology to promote ambulation in people with intellectual and multiple disabilities." Technology and Disability 33, no. 3 (2021): 229–36. http://dx.doi.org/10.3233/tad-210336.

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BACKGROUND: People with severe to profound intellectual disabilities and visual or motor impairment tend to be detached and sedentary. OBJECTIVE: The present study assessed a technology-aided intervention to promote ambulation in four people with severe to profound intellectual disability combined with blindness or deafness and spasticity. METHOD: The intervention was introduced according to a non-concurrent multiple baseline design across participants. The participants wore a smartphone fitted with the MacroDroid application at their right or left ankle. This application served to (a) detect

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21

Al-Bustanji, Murad A., Noor T. Al. Bdour, and Mohammad A. Beirat. "Hysterectomy of Girls with Intellectual Disabilities in Jordan: A Family Perspective." International Journal of Learning and Development 8, no. 1 (2018): 53. http://dx.doi.org/10.5296/ijld.v8i1.12342.

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The current study aimed at determining the Jordanian families’ degree of acceptance of having a hysterectomy performed on their daughters with intellectual disabilities (ID). It also aimed to study the differences based on the age of the girl with intellectual Disability, the type of the Intellectual disability of the girl, the severity level of disability, the gender of surveyed parent, the level of education of surveyed parent, and the level of monthly income of the family. The participants of the study were (329) parents of girls with intellectual disabilities. Each one of the participant c

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22

Peeters, Wilfried. "De onbegrepen wereld van matig, ernstig en diep verstandelijk beperkte kinderen met autisme." Wetenschappelijk Tijdschrift Autisme 23, no. 3 (2024): 17–31. http://dx.doi.org/10.36254/wta.2024.3.02.

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Children with moderate, severe or profound intellectual disabilities form a small but significant subgroup within the autism spectrum with high and very specific needs. This article reviews their behavioural characteristics and the way they process sensory stimuli and information. Because these children are – unlike people with a normal intelligence – unable to articulate their needs, an attempt is made to give a sketch of their unique experiential world: how do they experience the world, other people and themselves?

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23

Calveley (née Clark), Julie. "Including adults with intellectual disabilities who lack capacity to consent in research." Nursing Ethics 19, no. 4 (2012): 558–67. http://dx.doi.org/10.1177/0969733011426818.

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The Mental Capacity Act 2005 has stipulated that in England and Wales the ethical implications of carrying out research with people who are unable to consent must be considered alongside the ethical implications of excluding them from research altogether. This paper describes the methods that were used to enable people with severe and profound intellectual disabilities, who lacked capacity, to participate in a study that examined their experience of receiving intimate care. The safeguards that were put in place to protect the rights and well-being of participants are described, and it is argue

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24

Bindels-de Heus, Karen G. C. B., AnneLoes van Staa, Ingeborg van Vliet, Frans V. P. M. Ewals, and Sander R. Hilberink. "Transferring Young People With Profound Intellectual and Multiple Disabilities From Pediatric to Adult Medical Care: Parents' Experiences and Recommendations." Intellectual and Developmental Disabilities 51, no. 3 (2013): 176–89. http://dx.doi.org/10.1352/1934-9556-51.3.176.

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Abstract Many children with profound intellectual and multiple disabilities (PIMD) now reach adulthood. The aim of this study was to elicit parents' experiences with the transfer from pediatric to adult medical care. A convenience sample of 131 Dutch parents of young people with PIMD (16–26 years) completed a web-based questionnaire. Twenty-two percent of the young persons were still in pediatric care; 22% of the others had no care coordinator, although their health needs were the same. Parents valued the care provided by the pediatrician, and wished to see it continued. They were critical abo

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Griffiths, Colin, Sandra Fleming, Paul Horan, et al. "Supporting safe eating and drinking for people with severe and profound intellectual and multiple disabilities." Learning Disability Practice 21, no. 1 (2018): 26–31. http://dx.doi.org/10.7748/ldp.2018.e1817.

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Wissing, Maureen B. G., Andrea S. Fokkens, Roos Dijkstra, et al. "Dementia in people with severe/profound intellectual (and multiple) disabilities: Practice-based observations of symptoms." Journal of Mental Health Research in Intellectual Disabilities 15, no. 4 (2022): 364–93. https://doi.org/10.1080/19315864.2022.2061092.

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<strong>Abstract</strong><i>Introduction: </i>Observable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population.<i>Methods:</i><strong> </strong>Care professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experien

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Aherne, Cian, and Barry Coughlan. "A preliminary investigation of the suitability of aquatics for people with severe and profound intellectual disabilities." Journal of Intellectual Disabilities 21, no. 2 (2016): 118–33. http://dx.doi.org/10.1177/1744629516646513.

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Background: Aquatics is an under-researched but possibly appropriate form of activity for people with severe to profound intellectual disabilities (SPIDs). Aim: The current pilot study investigates the suitability of an aquatics programme for service users with SPIDs. Method: Four service users with SPID completed an 8–12-session aquatics programme. Front-line staff ( N = 6) were interviewed after the programme to explore its suitability. A thematic analysis of the interviews was utilized. Results: The thematic analysis unearthed main themes of effects, facilitators, barriers, strengths and ne

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Jackson, Jeffrey B., Sarah R. Steward, Susanne Olsen Roper, and Bertranna A. Muruthi. "Support Group Value and Design for Parents of Children with Severe or Profound Intellectual and Developmental Disabilities." Journal of Autism and Developmental Disorders 48, no. 12 (2018): 4207–21. http://dx.doi.org/10.1007/s10803-018-3665-z.

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29

Botha, Renier, and Zondani Zimba. "Managers' Readiness and Strategies for Severe Intellectual Disabilities: An Exploratory Study in Gauteng, South Africa." International Journal of Elementary Education 13, no. 3 (2024): 49–61. http://dx.doi.org/10.11648/j.ijeedu.20241303.12.

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In South Africa, learners with severe to profound intellectual disabilities have not had access to public funded education and support, leaving them vulnerable and excluded from the services available to all school-aged children. To address this national disparity, the South African government developed a Draft Policy Framework for the Provision of Quality Education and Support for Children with Severe to Profound Intellectual Disabilities, which is now being implemented in special care centres at a national level. In Gauteng, the draft policy is being implemented at the provincial level by th

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Desriyani, Yusi, Ikeu Nurhidayah, and Fanny Adistie. "Burden of Parents in Children with Disability at Sekolah Luar Biasa Negeri Cileunyi." NurseLine Journal 4, no. 1 (2019): 21. http://dx.doi.org/10.19184/nlj.v4i1.8696.

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Children with disabilities are children who have limited whether physical, intellectual, mental, sensory, and multiple disability. Children with disabilities tend to have poor quality of life due to low ability fulfilled basic needs independently. Therefore, they need special treatment from their parents and that could be the reasons of burden for parents as primary caregiver. This research aims to find the general burden of parents in disabilities children who attended Sekolah Luar Biasa (SLB) Negeri Cileunyi. This is a quantitative descriptive research with cross sectional approach. The popu

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Lancioni, Giulio E., Gloria Alberti, Chiara Filippini, et al. "A Technology System to Help People With Multiple Disabilities Increase Contact With Objects and Control Environmental Stimulation: Single-Case Research Design." JMIR Rehabilitation and Assistive Technologies 12 (March 21, 2025): e70378. https://doi.org/10.2196/70378.

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Background People with severe-to-profound intellectual disability and sensory-motor impairment tend to be passive and detached from their immediate context. Objective This study assessed a new technology system using a webcam to detect participants’ responses (ie, hand contact with objects) and to trigger computer delivery of preferred environmental stimulation, such as music, contingent on (immediately after) the occurrence of those responses. Methods In total, 8 adults with severe to profound intellectual disability and extensive motor and visual impairments participated in the study. Each p

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Eremina, Anna, Olga Shokhova, and Elena Firsova. "The competence of parents raising a child with special health needs." E3S Web of Conferences 210 (2020): 18108. http://dx.doi.org/10.1051/e3sconf/202021018108.

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The topic of the research covers socio-pedagogical problems of formation of significant parental competencies required for effective development of children with disabilities, including intellectual impairment and multiple types of mental deficiency (moderate, severe, profound mental retardation – F 71, 72). This article is the review of the parental competence structure and its distinctive features, it defines the characteristics that lead to deformation of competency comprising rejection of a child with developmental difficulties, hyperprotection, misunderstanding the patterns and uniqueness

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Vos, P., P. De Cock, K. Petry, W. Van Den Noortgate, and B. Maes. "Investigating the relationship between observed mood and emotions in people with severe and profound intellectual disabilities." Journal of Intellectual Disability Research 57, no. 5 (2013): 440–51. http://dx.doi.org/10.1111/jir.12021.

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Vos, Pieter, Paul De Cock, Vera Munde, et al. "The role of attention in the affective life of people with severe or profound intellectual disabilities." Research in Developmental Disabilities 34, no. 3 (2013): 902–9. http://dx.doi.org/10.1016/j.ridd.2012.11.013.

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Bitova, Anna L., Anna A. Portnova, Yury P. Sivolap, Oksana A. Kolomina, Artem Yu Novikov, and Timur B. Khasanov. "Analysis of the provision of mental health services in orphanages for children with neurodevelopmental disabilities in Russia." Neurology Bulletin LII, no. 3 (2021): 30–34. http://dx.doi.org/10.17816/nb33988.

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Aim. The aim of this study was to analyze the main problems of provision of mental health services in orphanages for children with neurodevelopmental disabilities in Russia. Methods. A cohort cross-sectional study was conducted in 23 orphanages, in which 2853 pupils live. Results. There was determined a structure of psychotic disorders among children of psycho-neurological orphanages. Prevalence of mental disorders among this group was: mild intellectual disability 56 (1.96%) people, moderate intellectual disability 967 (33.89%), severe intellectual disability 1079 (37.82%), profou

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Papuda-Dolińska, Beata, Anna Błaszczak, Katarzyna Wiejak, et al. "Observational Scales for Assessing Cognitive Development of Persons With Moderate (Kapp_sniu), Severe (Kapp_sniz) and Profound (Kapp_snig) Intellectual Disabilities – Characteristics of the Tool." Lubelski Rocznik Pedagogiczny 42, no. 2 (2023): 117–33. http://dx.doi.org/10.17951/lrp.2023.42.2.117-133.

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Introduction: On the basis of education, the criterion-referenced diagnosis of the disorder does not provide sufficient grounds for planning educational and therapeutic support. The functional characteristics supplementing the data from the nosological diagnosis show the possibilities and difficulties of a person in functioning in the everyday life context. Research Aim: The aim of the article is to present observational scales for assessing the cognitive functioning of people with moderate (KAPP_SNIU), severe (KAPP_SNIZ) and profound (KAPP_SNIG) intellectual disabilities aged 6 to 25, which a

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Kliewer, Christopher, and Douglas Biklen. "“School's Not Really a Place for Reading”: A Research Synthesis of the Literate Lives of Students with Severe Disabilities." Journal of the Association for Persons with Severe Handicaps 26, no. 1 (2001): 1–12. http://dx.doi.org/10.2511/rpsd.26.1.1.

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Developmental and connectionist research describing a student's development of competent reading and writing skills commonly evokes the image of a normative ladder to literacy. Each rung of the ladder is believed to constitute certain sets of increasingly complex subskills. It is believed that cognitive mastery is required prior to the next step up the ladder. For people labeled with severe mental retardation, subskill mastery is often considered an intellectual impossibility. Hence, literacy is denied. In this research synthesis, however, we suggest that people with severe intellectual limita

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Grove, Nicola, Karen Bunning, Jill Porter, and Cecilia Olsson. "See What I Mean: Interpreting the Meaning of Communication by People with Severe and Profound Intellectual Disabilities." Journal of Applied Research in Intellectual Disabilities 12, no. 3 (1999): 190–203. http://dx.doi.org/10.1111/j.1468-3148.1999.tb00076.x.

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39

Walton, Chris, Charles Antaki, and W. M. L. Finlay. "Orienting to affect in services for people with severe or profound intellectual disabilities: A UK‐based investigation." Journal of Applied Research in Intellectual Disabilities 33, no. 5 (2020): 876–86. http://dx.doi.org/10.1111/jar.12707.

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40

GARNHAM, BRIDGET, LIA BRYANT, PAUL RAMCHARAN, NILAN YU, and VALERIE ADAMS. "Policy, plans and pathways: the ‘crisis’ transition to post-parental care for people ageing with intellectual disabilities in rural Australian carescapes." Ageing and Society 39, no. 4 (2017): 836–50. http://dx.doi.org/10.1017/s0144686x17001258.

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ABSTRACTThe concurrent ageing of parental care-givers and people with intellectual disabilities is driving academic and social welfare concern for a post-parental care ‘crisis’. The ‘crisis’ typically pertains to a transition from primary care in the family home precipitated by the death or incapacity of older parents without a pre-planned pathway to post-parental care. This crisis is amplified in rural communities given low service engagement with families and a deficit of disability-supported accommodation and services. Academics, service providers and policy makers have responded through a

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van den Bosch, Kirsten A., Tjeerd C. Andringa, Wolter Peterson, Wied A. J. J. M. Ruijssenaars, and Carla Vlaskamp. "A comparison of natural and non-natural soundscapes on people with severe or profound intellectual and multiple disabilities." Journal of Intellectual & Developmental Disability 42, no. 3 (2016): 301–7. http://dx.doi.org/10.3109/13668250.2016.1250251.

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42

Lancioni, GE, NN Singh, MF O'Reilly, D. Oliva, and G. Basili. "An overview of research on increasing indices of happiness of people with severe/profound intellectual and multiple disabilities." Disability and Rehabilitation 27, no. 3 (2005): 83–93. http://dx.doi.org/10.1080/09638280400007406.

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Lambrechts, Greet, and Bea Maes. "Analysis of staff reports on the frequency of challenging behaviour in people with severe or profound intellectual disabilities." Research in Developmental Disabilities 30, no. 5 (2009): 863–72. http://dx.doi.org/10.1016/j.ridd.2008.12.004.

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Okamoto, Mari, Ryosuke Kojima, Akihiko Ueda, Machiko Suzuki, and Yasushi Okuno. "Characterizing eye-gaze positions of people with severe motor dysfunction: Novel scoring metrics using eye-tracking and video analysis." PLOS ONE 17, no. 8 (2022): e0265623. http://dx.doi.org/10.1371/journal.pone.0265623.

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Nonverbal communication with people who have physical disabilities is difficult. Eye-tracking technologies have recently been developed and applied to help people with physical disabilities in their communication. However, the eye-gaze patterns of people with severe motor dysfunction (SMD) have not been analyzed in detail. To clarify characterization of people with SMD, we aimed to develop gaze position-based evaluation metrics and analyze detailed eye-gaze patterns of people with SMD. We developed two new scoring metrics: (1) saliency score based on three saliency maps—spectral residual (SR),

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Lancioni, Giulio E., Nirbhay N. Singh, Mark F. O’Reilly, et al. "Promoting physical activity in people with intellectual and multiple disabilities through a basic technology-aided program." Journal of Intellectual Disabilities 22, no. 2 (2016): 113–24. http://dx.doi.org/10.1177/1744629516684986.

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This study assessed a technology-aided program (monitoring responding, and ensuring preferred stimulation and encouragements) for promoting physical activity with 11 participants with severe/profound intellectual and multiple disabilities. Each participant was provided with an exercise device (e.g. a static bicycle and a stepper) and exposed to the program according to an ABAB design, in which A and B represented baseline and intervention phases, respectively. Data recording concerned (a) the participants’ responses with the exercise device (e.g. pedaling) during baseline and intervention phas

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Tichá, Renáta, K. Charlie Lakin, Sheryl A. Larson, et al. "Correlates of Everyday Choice and Support-Related Choice for 8,892 Randomly Sampled Adults with Intellectual and Developmental Disabilities in 19 States." Intellectual and Developmental Disabilities 50, no. 6 (2012): 486–504. http://dx.doi.org/10.1352/1934-9556-50.06.486.

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Abstract This article examines everyday choices made by 8,892 adults with intellectual and developmental disabilities (IDD) and support-related choices made by 6,179 adults with IDD receiving services from 19 state developmental disabilities program agencies that participated in the 2008–2009 National Core Indicators Project. Controlling for physical and sensory impairment, age, behavioral support, communication, and state, people in residential settings with 16 or more people had less everyday choice than those in other living arrangements. People with mild and moderate IDD had more control o

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Jones, Martyn C., Robert M. Walley, Amanda Leech, Marion Paterson, Stephanie Common, and Charlotte Metcalf. "Using goal attainment scaling to evaluate a needs-led exercise programme for people with severe and profound intellectual disabilities." Journal of Intellectual Disabilities 10, no. 4 (2006): 317–35. http://dx.doi.org/10.1177/1744629506070051.

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Lancioni, Giulio E., Mark F. O’Reilly, and Gabriella Basili. "Use of microswitches and speech output systems with people with severe/profound intellectual or multiple disabilities: a literature review." Research in Developmental Disabilities 22, no. 1 (2001): 21–40. http://dx.doi.org/10.1016/s0891-4222(00)00064-0.

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Grove, Nicola. "Story, Agency, and Meaning Making: Narrative Models and the Social Inclusion of People With Severe and Profound Intellectual Disabilities." Journal of Religion, Disability & Health 16, no. 4 (2012): 334–51. http://dx.doi.org/10.1080/15228967.2012.731887.

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Lancioni, Giulio E., Gloria Alberti, Chiara Filippini, et al. "A New Technology System to Support Occupational Activity and Mobility in People with Severe-to-Profound Intellectual Disability and Blindness." OBM Neurobiology 09, no. 01 (2025): 1–20. https://doi.org/10.21926/obm.neurobiol.2501268.

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People with severe-to-profound intellectual disability and blindness tend to be sedentary and detached, given their orientation and mobility problems, often combined with their limited interest in their surroundings. An approach to address this problem may involve the use of technology systems guiding the participants through mobility and occupational activity (object use) with a combination of spatial/orientation cues, basic instructions for the responses required by the activity, and positive stimulation during the activity. This study extended the above-mentioned approach using a new techno

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