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The Experiences of Carers of Adults With Intellectual Disabilities During the First COVID-19 Lockdown Period

PATEL, Varsha
PEREZ-OLIVAS, Gisela
KROESE, Biza Stenfert
ROGERS, Gemma
ROSE, John
MURPHY, Glynis
COOPER, Vivien
LANGDON, Peter E
HILES, Steve
CLIFFORD, Clair
WILLNER, Paul
2021

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Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers.


Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the rst 2020 lockdown period.


Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis.


Results: Four main themes were identied: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being.


Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These Findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.

Experiences of Reciprocal Caring Among AdultsWith an Intellectual Disability Caring for an OlderFamily Member

TRUESDALE, Maria
TAGGART, Laurence
RYAN, Assumpta
McCONKEY, Roy
2021

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Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill-health. This has resulted in a shift in the parameters of the rela-tionship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as “reciprocity” or “mutual support.” Limited information exists about these “hidden carers” and what services are available to support them.

 

Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member.


Method: A qualitative methodology was employed using semi-structured interviews. Nine participants with mild-to-moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis.

 

Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing familymember; support; impact of caregiving and future planning.

 

Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of “in-house” support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.

Does the criminal justice system treat disabled people fairly? Inclusive justice: a system designed for all

EQUALITY AND HUMAN RIGHTS COMMISSION
April 2020

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The UK Equality and Human Rights Commission launched an inquiry to understand the experiences of disabled defendants and accused people in the criminal justice system. They looked at:

  • whether their needs are properly identified
  • the types of adjustments being made to accomodate their needs, and
  • whether they can fully participate in court processes and understand the charges they face.

Based on their findings, recommendations are made to UK Governments.

 

The use of video hearings was rapidly expanded in response to the coronavirus pandemic. In April 2020, interim findings from this inquiry were released to help mitigate the risks that this technology poses to disabled people in the criminal justice system.

Gendered experiences of physical restraint on locked wards for women

FISH, Rebecca
HATTON, Chris
2017

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Physical restraint is used in inpatient services for people with intellectual disabilities as a way of holding a person to avoid injury. This article uses data from an ethnographic study in a locked unit in the north of England to explore women’s experiences of physical restraint using a feminist disability studies analysis. Data consists of field notes as well as interviews with 16 of the women who had experienced restraint, and 10 staff who worked with them. The women gave insights into the gendered phenomenon of restraint in light of their past experiences of violence. The authors argue that restraint is used with women to encourage passivity at times when more relational and therapeutic methods could be used. The article offers recommendations for alternative strategies that services can encourage.

Satellite classes: A promising model for educating children and young people on the autism spectrum

CROYDEN, Abigail
et al
2017

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Results of research into attempts to provide the best of both mainstream and specialist education for autistic children are presented. The ‘satellite class’ model of supported inclusion is where the strengths of a special school education are kept in place for selected autistic pupils as they transfer to dedicated classes within mainstream ‘host schools’. The schools studied were all within the London borough of Tower Hamlets, UK.

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

BATES, Keith
GOODLEY, Dan
RUNSWICK-COLE, Katherine
2017

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This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal- able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.

Confessions of an inadequate researcher: space and supervision in research with learning disabled children

BENZON, Nadia von
2016

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Location is often at the fore of decision-making regarding fieldwork and choice of methods. However, little research has directly discussed the importance of the choice of site in the production of research data, particularly concerning the way that different relationships will manifest between researcher and participant in different spaces. Site may be particularly important in research with (learning disabled) children, as research location is intertwined with the level of caregiving required from the researcher, and the sorts of surveillance the research engagement may be subject to. This paper draws on research with learning disabled 6–16-year olds that took place in homes, schools and the outdoors, in a variety of microgeographical locations from bedrooms to nature reserves. This paper reflects on the challenges, including the very ‘worst’ research moments, occurring in the different research environments. Whilst the research was carried out with learning disabled children and young people, the discussion has implications for research with non-disabled children and ‘vulnerable’ participants more broadly.

Living in fear: experiences of hate crime and discrimination amongst people with learning disabilities and autism

BRADSHAW, Jill
RICHARDSON, Lisa
May 2016

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The views and experiences of people with learning disabilities and autism living within one UK unitary authority (Medway, Kent) were explored.  Aspects investigated were: how many people victimisation affects; who is affected by victimisation; what type of things happen to them; and the impact of victimisation on their quality of life.  The focus groups were: 7 groups with people with intellectual disability and autism (31 people); 4 groups with family and paid carers (33 people).  A survey was completed by: people with intellectual disabilities and autism (220 surveys) and family or paid carers (35 surveys).  27 individual interviews were carried out. 

Recognising the agency of people with dementia

BOYLE, Geraldine
May 2014

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People with dementia have been assumed to possess weak or even no agency, so this paper provides a novel contribution to academic debate by examining their actual potential for agency. The author draws on findings from a qualitative study of everyday decision-making by people with dementia that aimed to iden- tify the role of social factors (such as gender) in influencing their involvement in decisions. Whilst decision-making constitutes a form of deliberative agency, the research also identified when agency was alternatively habituated, embodied or emotional. The Economic and Social Research Council-funded research was undertaken in the North of England. Existing theoretical perspectives on agency are critiqued, particularly in relation to rationality, language and individualised agency. The study highlighted that people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency. A more expansive concept of agency is needed in social science theory that is informed by the experiences of cognitively disabled people.

Talking about sex and relationships : the views of young people with learning disabilities

CHANGE
2009

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"This report talks about the Sex and Relationships project. This was a 3-year project that took place at CHANGE, a leading national organisation led by disabled people that is based in Leeds, in England, that fights for the rights of people with learning disabilities...The project found out about the views and experiences of young people with learning disabilities about sex and relationships"

Autism : a guide for criminal justice professionals

THE NATIONAL AUTISTIC SOCIETY
2008

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"This guide provides background information about autistic spectrum disorders. It aims to assist all professionals working in the criminal justice system, who may come into contact with someone who has autism, particularly police officers, solicitors, barristers, magistrates, justices of the peace, the judiciary and the courts"

The sexual heath needs of young people with learning disabilities

FRASER, Shirley
SIM, Judith
2007

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This briefing paper summarises the key findings from an evidence review on the sexual health and wellbeing of young people with learning disabilities. The review assimilates various forms of evidence, including the voices of young people themselves and emerging findings from practice. It also identifies a number of potential future actions that will help ensure that sexual health services and sex and relationships education are better able to meet the needs of young people with learning disabilities, as well as those of their parents and the professionals that support them

Sexuality and relationships education for people with down syndrome

WOOD, Mandy
2004

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"This article describes why Sexuality and Relationships Education (SRE) as part of the school curriculum is especially important for individuals with Down syndrome and how parents and professionals can work together to ensure that it is delivered effectively"
Down Syndrome News and Update 4(2)

Inclusive citizenship : the Leonard Cheshire social exclusion report 2002

KNIGHT, John
HEAVEN, Christine
CHRISTIE, Ian
2002

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This report documents how disabled people have been excluded from society in the UK, and it explores possibilities for the inclusion of disabled people. It is useful for disabled people, disabled people's organisations, and non-governmental organisations aiming to include disabled people.

Downsed : discovering potential, transforming lives|Down syndrome online

THE DOWN SYNDROME EDUCATIONAL TRUST

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This website offers a broad range of information specific to down syndrome and assesses and evaluates programmes and processes that can facilitate the inclusive education of people with down syndrome. It features specific information on: employment, society and politics, motor skills, family, and numbers and mathematics

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