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'It's been adapted rather than impacted': A qualitative evaluation of the impact of Covid-19 restrictions on the positive behavioural support of people with an intellectual disability and/or autism Series: Journal of Applied Research in Intellectual Disabilities ; 34 (4) 1089-1097: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/jar.12859
- Background We used a qualitative approach to explore the experiences of social care staff regarding the provision of positive behavioural support (PBS) to people with an intellectual disability at the height of the Covid-19 restrictions. Method We conducted semi-structured interviews with 19 staff who had recently completed a PBS workforce development programme. Data were analysed using thematic analysis. Results Three themes were identified in the context of the restrictions: The challenges to maintaining quality of life and PBS of the people being supported and staff attempts to overcome these; the ways in which PBS and behaviour support plans were implemented and the impact on behaviours that challenge; the ways in which PBS principles were applied at organisational levels to help to understand and address staff stress and distress. Conclusions Overall, the staff identified many unexpected benefits of the restrictions. The results are discussed in the context of the study limitations.
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"It's ok, mom. I got it!": Exploring the experiences of young adults with intellectual disabilities in a postsecondary program affected by the COVID-19 pandemic from their perspective and their families' perspective Series: Journal of Intellectual Disabilities ; 25 (3) 405-414: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1177/17446295211002346
- Students' resilience in a postsecondary program for individuals with an intellectual disability impacted by the COVID-19 disruption and the challenges they faced during this time was captured in the context of social network analysis interviews that included students' and families' experiences as they managed the pandemic. Students' experiences spoke to their resilience in using the skills they gained through the program to navigate the COVID-19 disruption even though it was sometimes tricky. Parents' experiences revealed their increased confidence and sense of pride in their adult children when they observed growth in independence, self-determination, and familiarity with technology. Innovative and engaging instructional practices and e-mentoring support offered by peer mentors motivated students in their academics and encouraged their social development during this time. Student and parent experiences offer hope that young adults with an intellectual disability can gain skills in a postsecondary program that better prepares them to meet life's challenges.
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A Call to Action to Implement Effective COVID-19 Prevention and Screening of Individuals with Severe Intellectual Developmental and Autism Spectrum Disorders Series: Journal of Autism and Developmental Disorders ; 51 (7) 2566-2568: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1007/s10803-020-04719-6
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Applying the CRPD to People With Intellectual and Developmental Disability With Behaviors of Concern During COVID-19 Series: Journal of Policy and Practice in Intellectual Disabilities ; 18 (3) 197-202: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/jppi.12374
- People with intellectual and developmental disability (IDD) are a vulnerable population in all aspects of access and participation, abuse and neglect, and being subject to the use of restrictive practices. Accordingly, they are a group whose human rights can be impacted where equal access to supports, services, and accessible information is compromised. The current COVID-19 pandemic is a global humanitarian emergency that has had a devastating impact across the world, for all people. Growing concern has been raised about the impact of the COVID-19 virus on the health of people with disabilities and there has been subsequent development of strategies and protocols to promote equal access to information, health supports, and services. People with IDD have high levels of underlying comorbidity that increases their risk of contracting COVID-19 and measures to protect them from infection are critically important. However, those measures may trigger behaviors of concern and increase the risk of being subjected to restrictive practices. While some attention has been paid to the health impacts of COVID-19 on people with disabilities, there has been less paid to the impact on the human rights of people with IDD who present with behaviors of concern. The aim of this paper is to provide a hypothetical exploration of the impacts of pandemic prevention measures on people with IDD and behaviors of concern in the context of the Convention on the Rights of Persons with Disabilities (CRPD). In the absence of available guidance for working with people with IDD with behaviors of concern during COVID-19, we suggest behavior support response plans that aim to ensure that people with IDD with behaviors of concern are supported properly in a time of significant disruption for them, thereby safeguarding their human rights.
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Autistic adults' personal experiences of navigating a social world prior to and during Covid-19 lockdown in Spain Series: Research in Developmental Disabilities ; 117 104057: 2021- https://ihc.idm.oclc.org/login?url=https://www.sciencedirect.com/science/article/pii/S0891422221002067
- Background The SARS-CoV-2 coronavirus pandemic brought significant movement restrictions and national lockdowns. These drastic changes impacted routines, social life and support networks for the autistic community. Aims This study investigated the lived experiences of autistic adults with social expectations before and during the first Covid-19 lockdown in Spain. Methods A qualitative Reflexive Thematic Analysis was applied to 10 Photo Elicitation Interviews using images provided by five autistic adults. Interviews were conducted at two time points, before the pandemic and during the first lockdown. Findings Three themes before the pandemic were identified: (1) everyday interactions, (2) finding sense of belonging, and (3) fractured wellbeing, which revealed the participants' eagerness to fit in socially whilst experiencing rejection, weakening their mental health. During the first Covid-19 lockdown, two master themes were identified: (1) daily, positive experiences, and (2) surfacing failures, which emphasised an increased lived stigma as well as an ineffective autism support network, contributing to a heightened anxiety. Conclusions The current study provides further support to the recent findings highlighting lack of appropriate mental health support for the autistic communities during the pandemic, across the world. Future research should aim to provide more data on the experiences and needs of autistic communities when sudden societal changes are imposed.
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Blurring the Boundaries: Reflections From Early Career Faculty During the COVID-19 Era Series: Intellectual and Developmental Disabilities ; 59 (1) 1-6: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1352/1934-9556-59.1.1
- The last three issues of Intellectual and Developmental Disabilities (IDD) have featured perspectives from a diverse set of contributors on how the field of intellectual and developmental disabilities (IDD) is being impacted by COVID-19. As four newly appointed faculty members with diverse backgrounds, the editor of IDD invited us to share our experiences with beginning academic careers during this unique time. In making this request, he pointed out that approximately half the members of the American Association on Intellectual and Developmental Disabilities (AAIDD) are those who have some type of affiliation with an institution of higher education. While the perspectives outlined in this article do not represent those of all early career faculty, we hope our stories resonate with IDD readers who may be facing similar circumstances. This article includes a series of brief essays addressing how the pandemic has affected our academic job searches, research, teaching, and service. Although penned by different authors, each section encompasses our collective experiences, concerns, and hopes for the broader IDD community. We close with guiding questions that might support more socially responsive and integrated approaches to traditional academic roles as faculty continue to navigate the repercussions of COVID-19.
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Brief Report: Impact of COVID-19 on Individuals with ASD and Their Caregivers: A Perspective from the SPARK Cohort Series: Journal of Autism and Developmental Disorders ; 51 (10) 3766-3773: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1007/s10803-020-04816-6
- The impact of the 2019 coronavirus pandemic (COVID-19) in the United States is unprecedented, with unknown implications for the autism community. We surveyed 3502 parents/caregivers of individuals with an autism spectrum disorder (ASD) enrolled in Simons Powering Autism Research for Knowledge (SPARK) and found that most individuals with ASD experienced significant, ongoing disruptions to therapies. While some services were adapted to telehealth format, most participants were not receiving such services at follow-up, and those who were reported minimal benefit. Children under age five had the most severely disrupted services and lowest reported benefit of telehealth adaptation. Caregivers also reported worsening ASD symptoms and moderate family distress. Strategies to support the ASD community should be immediately developed and implemented.
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Commentary on "The experiences of Covid-19 'lockdown' for people with a learning disability: results from surveys in Jersey and Guernsey" Series: Tizard Learning Disability Review ; 26 (3) 130-133: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/TLDR-06-2021-0016
- Purpose This paper aims to consider the experiences of people with intellectual disabilities in relation to the COVID-19 pandemic and subsequent lockdown restrictions. Design/methodology/approach This commentary reflects on the issues raised by Morris et al., and in the wider literature. Findings Although there have been some benefits to lockdown for people with intellectual disabilities, mainly they have experienced isolation, increased mental health and well-being challenges, difficulty in accessing services, support and adequate adapted information. Originality/value This commentary argues that it is important to continue to capture the experiences of people with intellectual disabilities now and over time to assess the long-term consequences of the pandemic and to design services which are respondent to their needs.
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Core experiences of parents of children with autism during the COVID-19 pandemic lockdown Series: Autism ; 25 (4) 1047-1059: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1177/1362361320984317
- The lockdown that was imposed by governments as part of the attempt to contain the COVID-19 pandemic included extreme measures, such as home confinement and the shutting down of special education systems. Our aim was to learn about the core experiences of parents of children with autism during this significant life disturbance. Thirty-one parents of 25 children with autism participated in semi-structured telephone interviews which were transcribed verbatim and underwent a qualitative, immersion/crystallization analysis. The analysis was conducted in an iterative consensus-building process to identify parents' experiences, concerns, challenges, coping strategies, and perceived needs during the lockdown. The main themes that emerged related to the various parental concerns; the major difficulties encountered during this unique time, the functional, social, and behavioral implications the lockdown had on these children; and the manner in which the parents coped as an indication of their resourcefulness and outlook. Our findings broaden the insight into the underlying elements of the hardships and gains experienced by children with autism and their parents in times of significant life adversity. Programs in such times should be directed at supporting and guiding parents on how to better accommodate to the situation, thereby optimizing their coping strategies and resilience.
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COVID-19 and intellectual disability/autism spectrum disorder with high and very high support needs: issues of physical and mental vulnerability Series: Advances in Mental Health and Intellectual Disabilities ; 15 (1) 8-19: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/AMHID-07-2020-0016
- Purpose The COVID-19 outbreak has profoundly plagued the world, and current health efforts are focused on providing prevention and ensuring access to intensive services for people with the most severe symptomatology. Many reports have already described substantial psychological distress in the general population. Nevertheless, disasters tend to affect vulnerable subjects disproportionately, and individuals with intellectual disabilities/autism spectrum disorder with high and very high support needs (PwID/ASD-HSN) seem to be counted among the hardest hit populations. The present paper aims to provide a comprehensive discussion and evaluation of COVID-19 related issues specific to PwID/ASD-HSN. Design/methodology/approach Commentary on available literature and analysis of new preliminary data on PwID/ASD-HSN's physical and psychic vulnerability factors. This knowledge is fundamental to provide families and caregivers special advice to counteract the risks associated with the current pandemic. Findings PwID/ASD-HSN represent one of the most vulnerable population to the COVID-19 outbreak and the associated factors of mental distress for several reasons, including multimorbidity, low levels of health literacy, difficulties to understand and communicate, reliance on other people for care, low compliance with complex hygiene rules, the strong need of routine/sameness and low adaptive skills. Originality/value In the present work, the authors analyze the specific factors of physical and mental vulnerability in PwID/ASD-HSN, corroborating the dissertation with a discussion on the first data published worldwide and with preliminary data collected on the Italian territory for what concerns prevalence rates of COVID-19 and complications in persons with PwID/ASD-HSN and signs and symptoms of psychic distress during the mass quarantine period.
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COVID-19 and people with intellectual disabilities Series: Journal of Intellectual & Developmental Disability ; 45 (3) 203-203: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.3109/13668250.2020.1755075
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COVID-19 and the Field of Intellectual and Developmental Disabilities: Where Have We Been? Where Are We? Where Do We Go? Series: Intellectual and Developmental Disabilities ; 58 (4) 257-261: 2020- https://ihc.idm.oclc.org/login?url=https://www.aaiddjournals.org/doi/abs/10.1352/1934-9556-58.4.257
- The coronavirus (COVID-19) pandemic has affected, and will continue to affect, every aspect of the intellectual and developmental disabilities (IDD) community. We provide recommendations to (a) support people with IDD and the broader of field of IDD during the course of the pandemic, and (b) place the IDD community in a strong position when the health threats associated with the pandemic abate and post-pandemic social and policy structures are formed.
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COVID-19 impact on psychological outcomes of parents, siblings and children with intellectual disability: longitudinal before and during lockdown design Series: Journal of Intellectual Disability Research ; 65 (5) 397-404: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/jir.12818
- Background Parents of children with intellectual disability (ID) report comparatively lower levels of well-being than parents of children without ID. Similarly, children with ID, and to a lesser extent their siblings, are reported to show comparatively higher levels of behaviour and emotional problems. Psychological problems may be accentuated by restrictions associated with the COVID-19 pandemic, due to increased social, caring and economic stressors and reduced social support. However, existing studies have not been able to examine the impact of COVID-19 restrictions accounting for pre-COVID levels of well-being in these families. In a naturalistic design, we examined outcomes for parents, siblings and children with ID in a two-wave longitudinal study where Wave 2 data were gathered for some families before and some during COVID-19 restrictions. Methods Parents of children with ID who took part in a Wave 2 survey pre-lockdown (n = 294) and during/post-lockdown (n = 103) completed a number of measures about their well-being and the behaviour and emotional problems of both their child with ID and their nearest-in-age sibling. These same measures had also been completed for all families 2-3 years previously in Wave 1 of the study. Results After accounting for covariates including family socio-economic circumstances, pre-lockdown and post-lockdown groups did not differ on Waves 1 to 2 change for measures of parental psychological distress, life satisfaction, the impact of caregiving on their lives or perceived positive gains; nor child or sibling internalising or externalising behaviour problems. Conclusions Findings of the current study indicate that during and shortly after the COVID-19 lockdown in the United Kingdom, well-being in families of children with an ID (as reported by parents) was at similar levels compared with prior to the lockdown period.
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COVID-19 Pandemic and Impact on Patients with Autism Spectrum Disorder Series: Journal of Autism and Developmental Disorders ; 52 (1) 473-482: 2022- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1007/s10803-021-04950-9
- The COVID-19 infectious disease pandemic has caused significant fear and uncertainty around the world and had significant adverse psychological impact. Children, adolescents and adults with autism spectrum disorder (ASD) are a particularly vulnerable population, impacted by stay-at-home orders, closures at nonessential services, and social distancing standards. This commentary describes various challenges faced by individuals with ASD in the United States including disruptions caused by educational and vocational changes, challenges to home and leisure routines, limited access to behavioral health services and changes in health services delivery due to the pandemic. We highlight the need for ongoing skills development for individuals and development within systems to better respond to needs of the ASD population in future emergencies.
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COVID-19 social distancing: A snippet view of the autistic social world Series: Disability & Society ; 35 (6) 1007-1011: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1080/09687599.2020.1774866
- In this Current Issues article, I will use National Health Service guidelines on hand hygiene and social distancing measures (which the UK government introduced in March, 2020, to combat the COVID-19 coronavirus) to give readers an insight into the restricted social life of an autistic person, using auto/biography to explore my personal experience of social isolation and being a 'vulnerable adult'. I am an Autistic, newly qualified sociologist and I will be using my positionality as a vantage point, as the public adjust to my 'normal'. I acknowledge the element of 'choice' in autistic individuals' self-isolation but focus here on the social restrictions imposed on us from outside (social isolation). I call for social change, once the social distancing measures are lifted. These changes might occur at the individual level (e.g. being a friend) but will still broaden our social world.
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Development of a PBS helpline during COVID-19 Series: International Journal of Positive Behavioural Support ; 10 (2) 53-54: 2020- https://ihc.idm.oclc.org/login?url=https://www.ingentaconnect.com/contentone/bild/ijpbs/2020/00000010/00000002/art00009
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Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities Series: Journal of Applied Research in Intellectual Disabilities ; 33 (6) 1523-1533: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/jar.12811
- Introduction The measures implemented to manage the COVID-19 pandemic have been shown to impair mental health. This problem is likely to be exacerbated for carers. Method Informal carers (mainly parents) of children and adults with intellectual disabilities, and a comparison group of parents of children without disabilities, completed an online questionnaire. Almost all the data were collected while strict lockdown conditions were in place. Results Relative to carers of children without intellectual disability, carers of both children and adults with intellectual disability had significantly greater levels of a wish fulfilment coping style, defeat/entrapment, anxiety, and depression. Differences were 2-3 times greater than reported in earlier pre-pandemic studies. Positive correlations were found between objective stress scores and all mental health outcomes. Despite their greater mental health needs, carers of those with intellectual disability received less social support from a variety of sources. Conclusions The greater mental health needs of carers in the context of lesser social support raises serious concerns. We consider the policy implications of these findings.
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Ensuring equity for people living with disabilities in the age of COVID-19 Series: Disability & Society ; 35 (10) 1682-1687: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1080/09687599.2020.1809350
- People with disabilities are at higher risk of severe illness from COVID-19. They may also suffer from lack of accessible emergency preparedness plans, communication and healthcare. Protective measures for people with disabilities should be endorsed and prioritized at a community level to adjust for social distancing. Repositories of local resources for emergency outreach in this time are also crucial. Telemedicine offers an innovative and safe way for health providers to care for people with disabilities to access many critical services without placing themselves or their caregivers at increased risk of contracting COVID-19. Communication strategies for critical information about resources for people with disabilities should be accessible. United States hospitals and government agencies should make allocation guideline proposals accessible to people with disabilities and incorporate bias training.
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Experiences and needs of direct support staff working with people with intellectual disabilities during the COVID-19 pandemic: A thematic analysis Series: Journal of Applied Research in Intellectual Disabilities ; 34 (2) 480-490: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/jar.12812
- Background The present study aimed to explore the experiences and needs of direct support staff during the initial stage of the COVID-19 lockdown in the Netherlands. Method Overall, eleven direct support staff were recruited from five intellectual disability services to participate in this descriptive qualitative study. They recorded 34 audio messages during the considered period. Thematic analysis was used to analyse these audio recordings. Results Four themes emerged: (1) Emotional impact, which pertained to various emotions they experienced in their work; (2) Cognitive impact, which referred to challenges and changes they had undergone in their work; (3) Practical impact, which centred on the practical impact of the pandemic on their work; and (4) Professional impact, which concerned their experiences with other professionals. Conclusions This study provides valuable insights into the experiences and needs of direct support staff during the COVID-19 pandemic, which, in turn, can help inform practice in preparation for a second wave of COVID-19 or another future pandemic.
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Exploring the experiences of siblings of adults with intellectual/developmental disabilities during the COVID-19 pandemic Series: Journal of Intellectual Disability Research ; 65 (1) 1-10: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/jir.12793
- Background The COVID-19 pandemic has caused many adults with intellectual/developmental disabilities (IDD) to lose their daily routines and social support, and as a result, many adults with IDD are increasingly reliant on their family caregivers. Siblings often play a crucial support role for their brothers and sisters with IDD. As such, this study aimed to describe the experiences of adult siblings of people with IDD during the COVID-19 pandemic. Methods The Sibling Collaborative worked with researchers to codesign an online survey, completed by 91 people, exploring sibling supports and concerns during the COVID-19 pandemic. The survey also aimed to identify helpful resources for siblings during this time. Results The results showed that the majority of siblings are supporting their brother or sister with IDD during the COVID-19 pandemic and are concerned about the health and well-being of their brother/sister. The most common concern related to disruption of their brother's or sister's routine and activities. Although responses of older and younger siblings did not differ from each other, siblings whose brother or sister with IDD lived with family had some unique concerns relative to those whose siblings no longer lived with family. Siblings described how their own self-care and relationships with others, as well as support for their brother/sister, were particularly helpful during the COVID-19 pandemic. Conclusions Siblings are providing key support to their brother or sister with IDD during the COVID-19 pandemic, and they too must be supported. Siblings should be included in efforts to disseminate resources targeting people with IDD and their feedback and input must be obtained. It is also important to include sibling mental wellness as caregiver supports are created and implemented. More research is needed to further understand how to support sibling caregivers.
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Home education for children with autism spectrum disorder during the COVID-19 pandemic: Indonesian mothers experience Series: Research in Developmental Disabilities ; 114 103954: 2021- https://ihc.idm.oclc.org/login?url=https://www.sciencedirect.com/science/article/pii/S0891422221001037
- This study aimed to explore the experiences of mothers and efforts in implementing home education for children with autism, during the COVID-19 pandemic in Indonesia. Five mothers were recruited as participants and interviewed online, as the data obtained were examined through the use of thematic analysis. Also, three main themes were shown, (1) Mothers' experience in implementing home education, as regards adaptability and burden of caregiving, (2) The constraints in home education implementation, as regards maladaptive behaviours of ASD and emerging negative emotions, (3) The efforts to alleviate barriers, as regards problem-focused and religious copings. Also, the implementation of home education during the pandemic was less than optimal, due to the increase in maladaptive behaviours of the autistic children, low adaptability, the burden of caregiving, and emerging negative emotions. Appropriate coping strategies were also observed to help mothers in alleviating the constraints to implementing home education and parenting stress.
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How COVID-19 May Change the World of Services to People With Intellectual and Developmental Disabilities Series: Intellectual and Developmental Disabilities ; 58 (5) 355-360: 2020- https://ihc.idm.oclc.org/login?url=https://www.aaiddjournals.org/doi/abs/10.1352/1934-9556-58.5.355
- The COVID-19 epidemic caused disruption and dislocation in the lives of people with disabilities, their families, and providers. What we have learned during this period regarding the strengths and weaknesses of the service system for people with disabilities should provide a roadmap for building a more robust and agile system going forward. Based on a canvas of leaders in our field, I propose a way of outlining a reimagined system.
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How have youth with Autism Spectrum Disorder managed quarantine derived from COVID-19 pandemic? An approach to families perspectives Series: Research in Developmental Disabilities ; 110 103860: 2021- https://ihc.idm.oclc.org/login?url=https://www.sciencedirect.com/science/article/pii/S0891422221000093
- Quarantine derived from COVID-19 pandemic has challenged children and adolescents with Autism Spectrum Disorder (ASD) and their families daily life and routines. Because of these children unique needs related to manage uncertainty and overcoming situations, an in-depth approach to how they navigated through quarantine urged to better comprehend their current support needs. Forty-seven families with a child with ASD ranging in age between 2 and 17 years old (M = 7.3, SD = 3.4) from the north of Spain responded to an online developed questionnaire on different aspects of their daily life management of quarantine. Most of the families stressed that their offspring better drove quarantine than expected. Some families reported that youth participated more often in families' routines and were more communicative with their parents. Families, beyond some difficulties aroused, had more time to qualitatively spend with their children to teach new skills as autonomy or house care related skills. Families also developed new strategies to manage quarantine, such as structuring their days, using visual supports or new technologies for learning or leisure, and found more useful in this effort their family cohesion, online contact with relatives, and having online psychological supports.
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How is COVID-19 Affecting the Mental Health of Children with Special Educational Needs and Disabilities and Their Families? Series: Journal of Autism and Developmental Disorders ; 51 (5) 1772-1780: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1007/s10803-020-04577-2
- Parents of children with Special Educational Needs and Disabilities in the UK (n = 241) were asked to describe the impact of COVID-19 on their own mental health and that of their child. An inductive content analysis of the data was undertaken. Both parents and children appear to be experiencing loss, worry and changes in mood and behaviour as a result of the rapid social changes that have occurred. Some parents reported feeling overwhelmed and described the impact of child understanding and awareness. Finally, a minority of parents reported that COVID-19 has had little impact on mental health in their family, or has even led to improvements. Implications for how to support these families in the immediate future are discussed.
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Impact of COVID-19 outbreak on mental health and perceived strain among caregivers tending children with special needs Series: Research in Developmental Disabilities ; 107 103790: 2020- https://ihc.idm.oclc.org/login?url=http://www.sciencedirect.com/science/article/pii/S0891422220302225
- Background While COVID-19 outbreak has had adverse psychological effects in children with special needs, the mental state and burden on their caregivers during this pandemic has yet to be reported. Aims The objectives of this study were to describe the mental health status and the change in perceived strain among caregivers during the COVID-19 outbreak. Methods and procedures Two hundred sixty four caregivers completed an online survey that assessed demographics, use and perspective on tele-rehabilitation, homecare therapy, caregiver's strain and mental health. Outcomes and results The prevalence of depression, anxiety and stress symptoms were found to be 62.5 %, 20.5 % and 36.4 % respectively. A significant difference in caregiver strain (p < 0.001, effect size = 0.93) was observed during the outbreak compared to levels pre-outbreak (pre-outbreak strain was measured retrospectively). Caregivers not using tele-rehabilitation along with a perception of it being a poor medium for rehabilitation were at greater risks for poor mental health whereas a negative perception on homecare therapy were strongly associated with higher psychological symptoms and strain. Conclusions and implications This study identified a high prevalence of depression and significant change in strain displayed by caregivers during the COVID-19 outbreak. We identified several factors associated with poor mental health and perceived strain that can be used to help safeguard caregivers.
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In response to "Decommissioning normal: COVID-19 as a disruptor of school norms for young people with learning disabilities" Series: British Journal of Learning Disabilities ; 49 (4) 403-405: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12422
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Innovative response initiatives in the European Union to mitigate the effects of COVID-19 Series: Journal of Enabling Technologies ; 15 (1) 40-52: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/JET-09-2020-0039
- Purpose The COVID-19 pandemic has significantly impacted the European Union (EU) through heavy pressure on health services, business activity and people's life. To mitigate these effects, government agencies, civil society and the private sector are working together in proposing innovative initiatives. In this sense, this study aims to characterize and explore the relevance of these projects to mitigate the effects of COVID-19. Design/methodology/approach The Observatory of Public Sector Innovation provided by the Organization for Economic Co-operation and Development was considered to enable the identification and exploration of innovative projects to combat COVID-19. A methodology based on mixed methods is adopted to initially identify quantitatively the distribution of these projects, followed by a qualitative approach based on thematic analysis that allows exploring their relevance. Findings A total of 206 initiatives in the EU have been identified. The distribution of these projects is quite asymmetric, with Portugal and Austria totaling 33.52% of these projects. Most of these projects focus on the areas of public health, infection detection and control, virtual education, local commerce, digital services literacy, volunteering and solidarity and hackathons. Originality/value This work is relevant to identifying and understanding the various areas in which COVID-19 initiatives have been developed. This information is of great relevance for the actors involved in this process to be able to replicate these initiatives in their national, regional and local contexts.
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Lessons learned: what the COVID-19 global pandemic has taught us about teaching, technology, and students with autism spectrum disorder Series: Journal of Enabling Technologies ; 15 (2) 108-116: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/JET-12-2020-0053
- Purpose The purpose of this paper is to examine the impact of the abrupt transition from attending school face-to-face to participating in online learning in response to the COVID-19 pandemic as reported by a parent of a student with autism spectrum disorder (ASD). Design/methodology/approach A phone interview was conducted with the parent of a child with ASD. The semi-structured interview focused on how the child's family was impacted when classes shifted to virtual from face-to-face learning in response to the COVID-19 pandemic. Findings A total of four themes emerged from the interview. Three of these included adjustments to changes in routines and roles, instruction, and social interactions. A final theme involved the benefits and challenges that emerged following the transition to online learning for students with ASD. While we are in an unprecedented time with the COVID-19 global pandemic presenting understandable challenges, opportunities for and examples of effective virtual learning environments for students with ASD were reported in the parent interview and supported by the literature. Practical implications This research provides insight regarding the impact of COVID-19 and highlights elements that should be considered involving technology for students with ASD. Increased awareness regarding the benefits and contraindications of technology while teaching students with ASD can minimize the adverse effects and enhance the positive impact of technology in students with ASD. Originality/value This paper shares the experiences of one parent of a child with ASD and their experiences with technology and learning during COVID-19.
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Masks in the time of COVID-19 as an inadvertent simulation of facial paralysis Series: Disability & Society ; 36 (5) 840-843: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1080/09687599.2021.1899898
- New face mask requirements to slow the spread of COVID-19 have complex ramifications on stigma for people who have facial paralysis or facial difference. The author, a psychology researcher who has facial paralysis, links her research and insight into adapting to and destigmatizing facial paralysis to the COVID-19 pandemic. Masks render this visible disability nearly invisible, potentially undermining adaptation and identity. While people without facial paralysis are suddenly experiencing restricted facial expressions, people with facial paralysis are skilled in alternative expression (i.e. communicating with gesture, posture, and prosody). Disability simulations such as this increase non-disabled people's frustration and pity by simulating the immediate acquisition of a disability unless they showcase the adaptations disabled people develop over time. There is an opportunity to destigmatize people with facial paralysis and other disabilities by learning from their adaptations.
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My Son Can't Socially Distance or Wear a Mask: How Families of Preschool Children with Severe Developmental Delays and Challenging Behavior Experienced the COVID-19 Pandemic Series: Journal of Mental Health Research in Intellectual Disabilities ; 14 (2) 225-236: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1080/19315864.2021.1874578
- Background: Families of children with developmental delays (DD) prior to the COVID-19 pandemic experienced inequalities in accessing health and social care services. Measures put in place to combat the spread of the coronavirus have potentially exacerbated existing inequalities and have led to additional pressures for these families.Methods: We carried out a cross-sectional online survey of parents of young children with moderate to severe DD and challenging behaviors living in England, UK. We asked about the impact the pandemic has had on their family well-being, receipt of support, and post COVID-19 concerns.Results: Eighty-eight parents who are participants in an ongoing clinical trial (EPICC-ID) reported a broad range of challenges they faced during the pandemic: lack of information specific to children with DD; difficulties following social distancing and isolation rules; disruption or pause of health and social care services; deterioration in parental mental health and regression of the child's skills. Future access to services, negative long-term impact of school closures, parental unemployment were the parents' main post-COVID-19 concerns.Conclusions: Families of children with significant developmental delays fear lasting impact of the pandemic on their own psychological and material wellbeing and on their child's health. These families require urgent help to meet major health and social care needs and should be prioritized within an overall children's mental health strategy.The article includes a commentary from parents with lived experience.
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Perceptions of Families of Individuals with Autism Spectrum Disorder during the COVID-19 Crisis Series: Journal of Autism and Developmental Disorders ; 51 (8) 2920-2928: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1007/s10803-020-04760-5
- Caring for an individual with autism spectrum disorder (ASD) in ideal circumstances can be stressful, and the Coronavirus disease (COVID-19) pandemic created a high degree of disruption to life and stress to families living with an individual with ASD. We conducted an online survey of families in Michigan that revealed higher levels of stress in caregivers of younger individuals with ASD and those with greater severity of ASD symptoms. Stress around therapeutic service disruption, finances, and illness predominated and greater stress was reported for caregivers of individuals receiving greater intensity of services pre-COVID-19. Respondents voiced concerns about receiving respite care during COVID-19, and those expressing interest in respite also reported greater symptom severity in the person with ASD.
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Psychological distress and burden among family caregivers of children with and without developmental disabilities six months into the COVID-19 pandemic Series: Research in Developmental Disabilities ; 114 103983: 2021- https://ihc.idm.oclc.org/login?url=https://www.sciencedirect.com/science/article/pii/S0891422221001323
- The COVID-19 pandemic has created unique challenges for family caregivers of children with developmental disabilities (DD). The purpose of this study was to conduct a 6-month follow-up on the experiences of caregiver burden and psychological distress among caregivers of children with autism (ASD) and/or attention deficit hyperactivity disorder (ADHD) during COVID-19 pandemic, compare their experiences to caregivers of children without DD, and test the interaction between opportunities for self-care and caregiver burden and psychological distress. Results indicated caregivers of children with ASD/ADHD continued to report significantly higher levels of psychological distress and caregiver burden compared to caregivers of children without DD. Counter to study hypotheses decreased opportunities to engage in self-care as a result of the pandemic predicted higher levels of psychological distress and caregiver burden for caregivers of children without DD, whereas only caregiver burden was moderated by self-care for caregivers of children with ASD/ADHD. Overall, the COVID-19 pandemic is continuing to negatively impact the psychological health of family caregivers of school-age children. In general, greater challenges are presented for caregivers of children with ASD/ADHD, but they seem to be more resilient to some COVID-19 challenges than caregivers of children without DD.
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Psychological impact of Covid-19 pandemic in Italian families of children with neurodevelopmental disorders Series: Research in Developmental Disabilities ; 109 103840: 2021- https://ihc.idm.oclc.org/login?url=https://www.sciencedirect.com/science/article/pii/S0891422220302729
- Research on the psychological impact of the COVID-19 pandemic highlighted negative effects on the general population and particularly on parents. However, little is known about families of children with Neurodevelopmental Disorder (NDD). The present study investigated parental stress, coparenting, and child adjustment in Italian families with children with NDD (N = 82) and typical developing children (TD, N = 82) during lockdown, using an online survey. Results of quantitative analyses showed a significant increase in parental stress and child externalizing behaviors, but not of coparenting. Parental stress is predicted by externalizing behaviors, and coparenting acted as a moderator in the relationship between the change in the amount of time spent with the children before and during lockdown and parental stress. In children with NDD, the decrease in therapeutic/rehabilitation support predicted higher externalizing behaviors. Qualitative analysis showed that beyond the difficulties and worries arising during lockdown, most of the parents appreciated the opportunity of spending more time with their children and strengthening the parent-child relationship. In conclusion, our results point out the importance of ensuring continuity of care for children with NDD (e.g. telehealth) during home confinement and of providing psychological support for parents.
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Staying connected during COVID-19: Family engagement with adults with developmental disabilities in supported accommodation Series: Research in Developmental Disabilities ; 108 103812: 2021- https://ihc.idm.oclc.org/login?url=https://www.sciencedirect.com/science/article/pii/S0891422220302444
- Background Enduring family engagement and informal support is crucial to the health and well-being of adults with developmental disabilities (DD) residing in supported accommodation. The COVID-19 pandemic and restrictive measures enforced in residential settings have resulted in changes in daily routine and modified the ways families can interact with and provide support to residents. Yet, the impact of these changes has not been empirically explored. Aim Explore how family caregivers have interacted with and supported their relatives with DD residing in supported accommodation during the pandemic. Methods Changes in frequencies of communication modes and types of informal support were measured through a cross‐sectional and anonymous online survey which completed by 108 family caregivers of adults with DD. Results Most family caregivers adopted remote communication technologies; however, these were not perceived to be effective in filling the gap created by reduced face-to-face contact. While families were able to provide emotional support and advocacy using digital technologies, they were limited in their ability to provide significant social support. Conclusions Findings may help key stakeholders develop and implement novel strategies and policies to accommodate the changing circumstances and to ensure continuity of family engagement and informal support in the context of COVID-19.
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The experiences of mothers of children and young people with intellectual disabilities during the first COVID-19 lockdown period Series: Journal of Applied Research in Intellectual Disabilities ; 34 (6) 1421-1430: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/jar.12884
- Background Recent COVID-19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers. Aim The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period. Methods Eight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results Three main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future. Conclusions All mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well-being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed.
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The global COVID-19 Disability Rights Monitor: implementation, findings, disability studies response Series: Disability & Society ; 36 (8) 1356-1361: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1080/09687599.2021.1920371
- The global COVID-19 Disability Rights Monitor (COVID-19 DRM) has revealed major injustices suffered by disabled people around the world during the first stage of the pandemic, including enhanced institutionalisation, breakdown of essential services in the community, multiplication of intersectional harms, and denial of access to healthcare. In this paper, we present an overview of the COVID-19 DRM and its findings. We also offer a disability studies response by making recourse to the social model of disability, independent living philosophy, and analyses of biopolitics. We argue that the COVID-19 DRM illuminates systemic flaws that predate the pandemic, and that it is these flaws that need to be addressed in post-pandemic efforts at reconstruction.
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The hidden inequalities of COVID-19 Series: Autism ; 24 (6) 1309-1310: 2020- https://ihc.idm.oclc.org/login?url=https://journals.sagepub.com/doi/full/10.1177/1362361320927590
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The impact of COVID-19 on the social inclusion of older adults with an intellectual disability during the first wave of the pandemic in Ireland Series: Journal of Intellectual Disability Research ; 65 (10) 879-889: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/jir.12862
- Background Social restrictions and service closures from COVID-19 have negatively impacted social inclusion and well-being for some people with intellectual disabilities (IDs). Methods The fourth wave of a national longitudinal study on ageing in people with ID in Ireland was interrupted during the COVID-19 outbreak. Social inclusion data for pre-existing participants interviewed before COVID-19 (n = 444) were compared with data for pre-existing participants interviewed during/after lockdown (n = 62). Results More people interviewed after lockdown reported frequent family contact. Significantly greater numbers in the post-lockdown group reported access to and use of technology than the pre-lockdown group. Technology use was higher among those living in grouped residences supported by services compared with individuals living independently or with family. Conclusions During the early stages of the COVID-19 pandemic in Ireland, many older adults with ID stayed connected with family and reported rates of contact higher than were reported by others before COVID-19. This connection may have been supported by a significant increase in technology use during the pandemic. However, uneven use of technology may disadvantage some including individuals living with family or independently. Given that COVID-19 restrictions are likely to continue to restrict social opportunities, increased digital support may assist more people with ID to use technology to maintain their social connections.
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The impact of the COVID-19 pandemic on the health, wellbeing, and access to services of people with intellectual and developmental disabilities Series: Research in Developmental Disabilities ; 114 103985: 2021- https://ihc.idm.oclc.org/login?url=https://www.sciencedirect.com/science/article/pii/S0891422221001347
- Background Individuals with intellectual and developmental disabilities (IDD) may be especially vulnerable to changes associated with the COVID-19 pandemic given an increased likelihood of health concerns, low socioeconomic status, and difficulty accessing services. Aims The purpose of this study was to explore mental health problems and services in individuals with IDD during the pandemic. We explored whether number of mental health problems differed by disability, age, gender, living situation, physical health, and access to services. Methods and procedures An online survey about experiences during the pandemic was administered to adults with IDD and their caregivers in the United States and in Chile. Outcomes and results In both Chile and the United States, few people endorsed increased health problems. Half of the sample in Chile and 41 % of the sample in the United States endorsed increased mental health problems. Approximately 15 % of the sample in the US reported no longer receiving state developmental disability services. Conclusions and implications Healthcare and disability-specific agencies should consider strategies to tailor supports to improve mental health functioning and access to community.
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The possibility and importance of immersive technologies during COVID-19 for autistic people Series: Journal of Enabling Technologies ; 14 (3) 187-199: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/JET-07-2020-0028
- Purpose The purpose of this paper is to identify three key areas where autistic people may find themselves impacted through COVID-19, namely, education; employment; and anxiety. Design/methodology/approach This paper provides some views based on the extensive experience of using immersive technologies for the utilisation and application with autistic groups during COVID-19. Findings This paper offers some examples of immersive technology application that might be helpful for practitioners, services and others to consider in overcoming possible challenges faced by people with autism. Originality/value This opinion piece offers expert insights to the role immersive technologies and virtual reality might play during COVID-19 in the lives of autistic groups.
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The Wellbeing and Mental Health Care Experiences of Adults with Intellectual and Developmental Disabilities during COVID-19 Series: Journal of Mental Health Research in Intellectual Disabilities ; 14 (3) 285-300: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1080/19315864.2021.1892890
- Introduction: COVID-19 has adversely impacted the health and wellbeing of people with intellectual and developmental disabilities (IDD). While there is emerging research examining how to support the mental health of this population during the pandemic, the perspectives and experiences of people with IDD have been largely absent.Methods: Nine virtual interviews were conducted with adults with IDD to explore the impact of the COVID-19 pandemic on their wellbeing and mental health care. Interview transcripts were analyzed thematically.Results: Findings centered around three main themes: (1) the impact of the pandemic on daily life and wellbeing; (2) a need for connection; and (3) availability and access to mental health supports.Conclusion: Participants described significant challenges to their health and wellbeing related to the pandemic and public health measures, but also demonstrated remarkable resilience in the face of this new adversity. Findings highlight ways to support the wellbeing of adults with IDD and how social determinants impact mental health.
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