The idea that disabled young people should be at the centre of decision making about their future is promoted in policy, practice and research, yet this often translates into a narrow agenda on transitions through service and benefits systems. In this project, we aimed for an expansive exploration of disabled young people’s hopes and dreams in the context of unprecedented societal changes. Co-production methods brought academics, members of a Centre for Independent Living, and nine peer researchers together to host knowledge cafes with fifty seven disabled young people. Peer researchers visited a robotic laboratory and developed key messages around the freedom to define their future that engaged stakeholders in the impact events they took part in. The themes: being responsible, giving love, freedom and happiness and a strong sense of self and togetherness, convey a more filled-out vision of disabled young people’s futures and a new politics of the possible.
(Edited publisher abstract)
The idea that disabled young people should be at the centre of decision making about their future is promoted in policy, practice and research, yet this often translates into a narrow agenda on transitions through service and benefits systems. In this project, we aimed for an expansive exploration of disabled young people’s hopes and dreams in the context of unprecedented societal changes. Co-production methods brought academics, members of a Centre for Independent Living, and nine peer researchers together to host knowledge cafes with fifty seven disabled young people. Peer researchers visited a robotic laboratory and developed key messages around the freedom to define their future that engaged stakeholders in the impact events they took part in. The themes: being responsible, giving love, freedom and happiness and a strong sense of self and togetherness, convey a more filled-out vision of disabled young people’s futures and a new politics of the possible.
(Edited publisher abstract)
Subject terms:
young people, disabilities, co-production, user views;
JOHANNSDOTTIR Asta, EGILSON Snaefridur Thora, GIBSON Barbara E.
Journal article citation:
Disability and Society, 36(3), 2021, pp.342-357.
Publisher:
Taylor and Francis
Affect theories have become widespread in feminist research and other critical social sciences but have just recently entered critical disability studies. This paper is an attempt to connect the two. We argue that it is important to ground theoretical discussion in empirical data and discuss how affective practices can offer a deeper, more nuanced analysis to unfold shame and other negative affects. In order to shed light on how shame may unfold, we draw on data from focus group interviews with young disabled people as informants. The paper concludes with a discussion of the possibilities for empirically analysing affect in critical disability studies, showing how power circulates through affect. The circulating affects are sometimes hard to recognize and, therefore resist. When recognized, the imposition of shame can be resisted over time.
(Edited publisher abstract)
Affect theories have become widespread in feminist research and other critical social sciences but have just recently entered critical disability studies. This paper is an attempt to connect the two. We argue that it is important to ground theoretical discussion in empirical data and discuss how affective practices can offer a deeper, more nuanced analysis to unfold shame and other negative affects. In order to shed light on how shame may unfold, we draw on data from focus group interviews with young disabled people as informants. The paper concludes with a discussion of the possibilities for empirically analysing affect in critical disability studies, showing how power circulates through affect. The circulating affects are sometimes hard to recognize and, therefore resist. When recognized, the imposition of shame can be resisted over time.
(Edited publisher abstract)
Journal of Applied Research in Intellectual Disabilities, 33(5), 2020, pp.856-864.
Publisher:
Wiley
... disabilities. An integrative model of self‐determination and related contextual factors was tested through a structural equation modelling approach. Participants were adolescents that reported their perceptions on self‐determination dimensions and opportunities. Results indicated that educational and family contexts impacted self‐determination and provided further understanding on self‐determination
(Edited publisher abstract)
Self‐determination, as a person dispositional characteristic, is indeed influenced by situational characteristics that shape actions across contexts. Research has also reported differences in self‐determination as a function of personal factors, but there is a need to integrate this knowledge in a general model aiming to analyse the impact of contextual variables in adolescents with and without disabilities. An integrative model of self‐determination and related contextual factors was tested through a structural equation modelling approach. Participants were adolescents that reported their perceptions on self‐determination dimensions and opportunities. Results indicated that educational and family contexts impacted self‐determination and provided further understanding on self‐determination dimensions’ entity and function. Relevant implications for self‐determination measure, comprehension and promotion derived from this study are discussed.
(Edited publisher abstract)
Semi-structured interviews were conducted with boys and young men who have Duchenne muscular dystrophy (DMD), a severe, degenerative condition that only affects boys. The main focus of the interviews was to explore how the participants thought they might make a decision to take part in medical research. To better understand this, aspects of the participants’ lives were discussed; they talked about the impact of discomfort and declining mobility, and the social issues they experienced, such as discrimination and a sense of difference. Their observations indicate that living with a degenerative condition has physical and social impacts, and that there are limited opportunities for them to talk about these issues. It was also apparent that parents are key figures who provide care for their child, often in the absence of comprehensive support services. Raising these matters privileges the experiences of severely disabled children and young people, who live with increasing muscle weakness, disablist attitudes and intensifying support needs. Their contributions build on understandings of life with a degenerative condition, highlighting the intersection of impairment and social issues in their lived experience.
(Original abstract)
Semi-structured interviews were conducted with boys and young men who have Duchenne muscular dystrophy (DMD), a severe, degenerative condition that only affects boys. The main focus of the interviews was to explore how the participants thought they might make a decision to take part in medical research. To better understand this, aspects of the participants’ lives were discussed; they talked about the impact of discomfort and declining mobility, and the social issues they experienced, such as discrimination and a sense of difference. Their observations indicate that living with a degenerative condition has physical and social impacts, and that there are limited opportunities for them to talk about these issues. It was also apparent that parents are key figures who provide care for their child, often in the absence of comprehensive support services. Raising these matters privileges the experiences of severely disabled children and young people, who live with increasing muscle weakness, disablist attitudes and intensifying support needs. Their contributions build on understandings of life with a degenerative condition, highlighting the intersection of impairment and social issues in their lived experience.
(Original abstract)
NATIONAL DEVELOPMENT TEAM FOR INCLUSION, BRITISH ASSOCIATION FOR SUPPORTED EMPLOYMENT
Publisher:
National Development Team for Inclusion
Publication year:
2016
Pagination:
5
Place of publication:
Bath
This short guide outlines the key considerations when supporting young people with special educational needs and disabilities to move into paid work. The employment rate for disabled people stands at 45.7 per cent for the period July to September 2015 against an overall employment rate of 78 per cent and yet only 6 per cent of people with a moderate to severe learning disability known to adult
(Edited publisher abstract)
This short guide outlines the key considerations when supporting young people with special educational needs and disabilities to move into paid work. The employment rate for disabled people stands at 45.7 per cent for the period July to September 2015 against an overall employment rate of 78 per cent and yet only 6 per cent of people with a moderate to severe learning disability known to adult social care are in work. The guide covers: raising aspirations of children, young people and everyone around them; ensuring high quality, impartial career information, advice and guidance for young people and outlining how this can be built into the curriculum; understanding the use and importance of vocational profiles, how to include their development in classroom or tutorial time and how to ensure they inform a vocational curriculum; developing work experiences in real work settings in line with aspirations; working with social care to maximise opportunities for holiday and weekend jobs; creating more work opportunities through traineeships, supported internships and apprenticeships; ensuring that employment support is of high quality, staff are appropriately trained in supported employment and Training in Systematic Instruction and there are mechanisms for monitoring success rates; and ensuring follow-on support is in place for young people after they leave education to maintain or gain paid work
(Edited publisher abstract)
Subject terms:
employment, special educational needs, disabilities, young people;
Child: Care, Health and Development, 41(6), 2015, pp.1018-1029.
Publisher:
Wiley
Background: Clinicians working with youth with disabilities have acknowledged making friends as a commonly identified client goal. Clinicians find this goal difficult to address, as there are no measures that provide a breakdown of making friends into functional steps. In addition, research on friendship has traditionally focused on characteristics and quality of friendships rather than
(Publisher abstract)
Background: Clinicians working with youth with disabilities have acknowledged making friends as a commonly identified client goal. Clinicians find this goal difficult to address, as there are no measures that provide a breakdown of making friends into functional steps. In addition, research on friendship has traditionally focused on characteristics and quality of friendships rather than the friend-making process as a whole. A goal menu, comprised of a variety of steps that address the goal of making friends, would provide guidance to clinicians challenged with this goal in practice.
Purpose: To develop an understanding of the friend-making process as a first step towards the development of a goal menu for the goal of making friends.
Methods: A literature review, youth focus group and expert clinician semi-structured interviews and consultation were used to generate a comprehensive data set. Established qualitative methods were used to sort and group the data into categories. A thematic analysis of the categories was performed.
Results: Analysis revealed four themes integral to the friend-making process: person factors influencing friend-making, making friend-making a priority, opportunity for friend-making and motivation to make friends. An additional theme identified as occasionally involved in the process was a little bit of luck in making friends.
Conclusions: The themes generated by this research indicate that actionable target areas exist for the somewhat abstract notion of friend-making and the authors recommend that clinicians explore beyond person factors when addressing the goal of making friends. As a next step, the identified themes will provide the foundation for a goal menu, ultimately enabling clinicians to address the goal of making friends in a more efficient and effective manner.
(Publisher abstract)
Subject terms:
disabilities, friendship, young people, life skills;
This report raises concerns about the impact reforms to Disability Living Allowance (DLA) will have on the ability of young disabled people aged 16-25 to establish independent living. The report, based on the views of young people across England and Scotland, cautions that not enough consultation has been done with disabled young people to ensure that Personal Independence Payments (PIP), which will replace DLA from October 2013, meet their needs. The report urges Government to work more closely with disabled young people and to monitor the impact PIP has on them when it is introduced. The report sets out four principles identified by disabled young people to help the benefit system support them effectively: participation - the government needs to ensure that they are providing active opportunities for disabled young people to participate in the design of the benefit system; information - it is vital that disabled young people are provided with accessible information in a range of formats to ensure they are able to actively engage with benefits and assessments; advocacy - an independent advocate should be provided, where requested, to ensure that disabled young people are able to play an active role in their assessment and to get their voices heard; and choice - there should be an element of 'choice' given to disabled young people to enable them to access an assessment process that best meets their needs.
This report raises concerns about the impact reforms to Disability Living Allowance (DLA) will have on the ability of young disabled people aged 16-25 to establish independent living. The report, based on the views of young people across England and Scotland, cautions that not enough consultation has been done with disabled young people to ensure that Personal Independence Payments (PIP), which will replace DLA from October 2013, meet their needs. The report urges Government to work more closely with disabled young people and to monitor the impact PIP has on them when it is introduced. The report sets out four principles identified by disabled young people to help the benefit system support them effectively: participation - the government needs to ensure that they are providing active opportunities for disabled young people to participate in the design of the benefit system; information - it is vital that disabled young people are provided with accessible information in a range of formats to ensure they are able to actively engage with benefits and assessments; advocacy - an independent advocate should be provided, where requested, to ensure that disabled young people are able to play an active role in their assessment and to get their voices heard; and choice - there should be an element of 'choice' given to disabled young people to enable them to access an assessment process that best meets their needs.
Subject terms:
independent living, young people, disability living allowance, disabilities;
This investigation into accessible housing and the services of the UK’s housing providers was instigated following concerns raised by members of the Trailblazers network and their families when searching for accessible accommodation to rent or buy. Members reported having to wait years to find wheelchair-accessible homes, despite local authorities providing funds for adaptations to the homes of thousands of disabled people every year. The report was compiled using the views and experiences of 200 disabled members. It found that eight out of 10 members were not confident they would find a suitable property if they moved out of the family home, and the same number were not confident they would be able to access the same level of care if they moved out of their local authority. It also showed that a lack of information from estate agents, local authorities or other providers has prevented or deterred half their members from living independently. The charity is calling on local authorities to make it easy for young people to transfer their healthcare packages between regions.
This investigation into accessible housing and the services of the UK’s housing providers was instigated following concerns raised by members of the Trailblazers network and their families when searching for accessible accommodation to rent or buy. Members reported having to wait years to find wheelchair-accessible homes, despite local authorities providing funds for adaptations to the homes of thousands of disabled people every year. The report was compiled using the views and experiences of 200 disabled members. It found that eight out of 10 members were not confident they would find a suitable property if they moved out of the family home, and the same number were not confident they would be able to access the same level of care if they moved out of their local authority. It also showed that a lack of information from estate agents, local authorities or other providers has prevented or deterred half their members from living independently. The charity is calling on local authorities to make it easy for young people to transfer their healthcare packages between regions.
Subject terms:
housing, waiting lists, young people, disabilities;
A one off magazine produced by a group of young disabled people as part of a project at the Norah Fry Research Centre, University of Bristol to improve take up of direct payments by young disabled people. The magazine is aimed at young people and includes pictures, personal experiences, examples of what young people use their direct payments for, working with your personal assistant.
A one off magazine produced by a group of young disabled people as part of a project at the Norah Fry Research Centre, University of Bristol to improve take up of direct payments by young disabled people. The magazine is aimed at young people and includes pictures, personal experiences, examples of what young people use their direct payments for, working with your personal assistant.
Transition Pathway aims to provide a navigable route for professionals and pupils with special educational needs through the complex process of transition to adulthood within the framework of government legislation and guidance. It offers holistic, person-centred guidance and tools to support transition for young disabled people aged 13-25. The resource pack is designed to reflect the advice and priorities of young disabled people, their families and multi-agency professionals with experience of the process and was originally developed by a multi-agency team in the West Midlands. It aims to help young people think about, plan and lead the lives they want. The pack is divided into five sections. Section 1 covers guidance and looks at the legal framework, some examples of good practice, definitions and jargon, and the process map. Section 2 covers the tools for transition in five stages, getting ready, making a transition plan, planning ahead, leaving school and moving on. Section 3 provides additional guidance for young people who are looked after or who have after care support. Section 4 includes examples, and other useful resources and websites are listed in Section 5. The resource is also intended to be of value to mangers and commissioners when planning future resource needs. A companion guide “The Big Picture” is written for young people and their families to use as they go through the transition process and can be used as a personal workbook.
Transition Pathway aims to provide a navigable route for professionals and pupils with special educational needs through the complex process of transition to adulthood within the framework of government legislation and guidance. It offers holistic, person-centred guidance and tools to support transition for young disabled people aged 13-25. The resource pack is designed to reflect the advice and priorities of young disabled people, their families and multi-agency professionals with experience of the process and was originally developed by a multi-agency team in the West Midlands. It aims to help young people think about, plan and lead the lives they want. The pack is divided into five sections. Section 1 covers guidance and looks at the legal framework, some examples of good practice, definitions and jargon, and the process map. Section 2 covers the tools for transition in five stages, getting ready, making a transition plan, planning ahead, leaving school and moving on. Section 3 provides additional guidance for young people who are looked after or who have after care support. Section 4 includes examples, and other useful resources and websites are listed in Section 5. The resource is also intended to be of value to mangers and commissioners when planning future resource needs. A companion guide “The Big Picture” is written for young people and their families to use as they go through the transition process and can be used as a personal workbook.