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Timetabling a transition with dignity: perspectives of young adults with significant support needs
- Authors:
- HART Sarah M., HILL Mary F., GAFFNEY Janet S.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 46(3), 2021, pp.227-238.
- Publisher:
- Taylor and Francis
Background: This study investigated transition, or school leaving, as experienced by young adults living in Aotearoa New Zealand who had significant intellectual and developmental disabilities. Method: To investigate these typically unheard perspectives, qualitative methods were adapted to individual communication preferences. Personal and contextual intersections were critically analysed using the theoretical framework of the capability approach. The capability approach emphasises individuality and one's freedom of choice to construct a good life of dignity. Results: Timetables - schedules of daily activities - were examined using artefactual analysis to make sense of and explain important insights about transition through this pivotal support anchor. Yet, the utility of these artefacts, found to communicate personal capabilities, was underrecognised by those supporting transitions from school. Conclusion: This article reports fresh insights into supporting this critical life stage increasing the potential for a transition with dignity. (Edited publisher abstract)
Reflections on a participatory project: the rewards and challenges for the lead researchers
- Authors:
- CONDER Jennifer, MILNER Paul, MIRFIN-VEITCH Brigit
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 36(1), March 2011, pp.39-48.
- Publisher:
- Taylor and Francis
Participatory research offers potential for people with an intellectual disability to have an active voice in service provision. Using the example of a project to develop a quality of life tool in New Zealand, this paper aims to address 3 issues raised in a 2004 article by Ramcharan, Grant, and Flynn in relation to participation of people with an intellectual disability in research: lack of detail about level of participation, how people have been supported in their participation, and the extent to which participation in the project has changed the lives of the participants. The article includes a brief overview of the project, and presents a discussion drawn from reflections on the research process by the researchers. The researchers worked with people with an intellectual disability who were service users as co-researchers or participants in choosing indicators of quality of life. The article discusses the participation of the 6 co-researchers and 95 participants, the support provided, and whether co-researchers' and participants' lives were changed. The authors note that although the project achieved its goal of people with intellectual disability authoring a quality of life tool, there was a variation in participants' contribution, and the financial and practical support of the contracting organisation was crucial to enabling people to take part.
Factors that influence outcomes for clients with an intellectual disability
- Author:
- RAFFENSBERGER Marilyn K.
- Journal article citation:
- British Journal of Guidance and Counselling, 37(4), November 2009, pp.495-509.
- Publisher:
- Taylor and Francis
Is counselling effective for clients with an intellectual disability? Practitioners question not only the ability of these clients to derive benefit from counselling but also their own ability to provide an effective service. However, this simplistic binary question does not do justice to the complexities of either the counselling process or the lives of those with an intellectual disability. A more useful question would be, 'What factors influence the counselling outcomes of these clients?' This review invites practitioners to refrain from questioning abilities, but rather to reflect on their practice in light of this latter question. Researchers are invited to broaden the scope of their enquiry to further assist practitioners' reflections.
The mountain to be climbed
- Author:
- NOONE Zita
- Journal article citation:
- Professional Social Work, April 2008, pp.20-21.
- Publisher:
- British Association of Social Workers
The author, winner of a Social Workers' Educational Trust scholarship award, discusses her research visit to New Zealand as part of her investigation into palliative care for people with learning disabilities.
Paid work and intellectual disability
- Author:
- REID Patricia M.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 22(2), June 1997, pp.87-96.
- Publisher:
- Taylor and Francis
Describes a survey in New Zealand in which selected agencies were asked to identify adults with intellectual disabilities who had paid community-based work. Agencies forwarded invitations to adults whom they considered were successfully employed. Seventeen workers responded and were interviewed on how they obtained and learned their job and initial and ongoing support. Themes such as independence at work, the continued need for links with formal support, choices in lifestyle opportunities and lack of career path options are discussed in this article. Strategies leading to better opportunities and greater employment rates of adults with intellectual disabilities are offered.
New voices: self-advocacy by people with disabilities
- Editors:
- DYBWAD Gunnar, BERSANI Hank Jr.
- Publisher:
- Brookline Books
- Publication year:
- 1996
- Pagination:
- 286p.
- Place of publication:
- Cambridge, MA
Collection of papers on self advocacy by people with developmental disabilities, many by self advocates themselves. Provides an historical background to the development of the self advocacy movement in the Western world. Examines the current state of self advocacy activities, and concludes by projecting the movement's future course as it continues to be accelerate worldwide amongst people with learning difficulties.
The beliefs, values and principles of self-advocacy
- Author:
- INTERNATIONAL LEAGUE OF SOCIETIES FOR PERSONS WITH MENTAL HANDICAP
- Publisher:
- Brookline Books
- Publication year:
- 1996
- Pagination:
- 48p.
- Place of publication:
- Cambridge, MA
Booklet setting out values and principles for self-advocacy. Also contains sections on: support and the role of a support person; empowerment; institutions; and stories of good practice from around the world.
“Getting by”: people with learning disability and the financial responsibility of independent living
- Authors:
- CONDER Jennifer Ann, MIRFIN‐VEITCH Brigit Frances
- Journal article citation:
- British Journal of Learning Disabilities, 48(3), 2020, pp.251-257.
- Publisher:
- Wiley
Background: Within Aotearoa New Zealand (ANZ), disability policy is directed at increasing choices for disabled people. However, funding to individuals remains insufficient to address wider social inequities that exist. While people with learning disability enjoy the freedom of living independently, they can be at risk of poor health outcomes and limited opportunities to fully engage within their community. Method: This qualitative research explored the experience of living independently with 20 adults with learning disability within ANZ. Taking a constructivist perspective, interview transcripts were analysed to develop an understanding of their experience. Multiple readings resulted in comparison and contrast of data. The researchers discussed developing themes before settling on final themes. Results: With regard to money management, two themes were identified. The first illustrates the challenges of managing a budget, while the second highlights what people's limited budgets meant in terms of how they were able to live. Conclusion: This research reinforced previous studies whereby people with learning disability place a high value on having choices. However, it also demonstrated that social inequities within ANZ are not being addressed, as without other financial support, people on a benefit struggled to afford medical and dental care, or holidays and other leisure activities. (Edited publisher abstract)
Perceptions of ageing and future aspirations by people with intellectual disability: a grounded theory study using photo-elicitation
- Authors:
- TRIP Henrietta, WHITEHEAD Lisa, CROWE Marie
- Journal article citation:
- Ageing and Society, 40(5), 2020, pp.966-983.
- Publisher:
- Cambridge University Press
Internationally, 1 per cent of the general population are living with an intellectual disability and life expectancy is increasing in line with global trends. The majority of people with an intellectual disability live with family. This represents a growing and largely ‘hidden’ population who have, or will have, additional needs as they and their family age. There is limited research about what is important for people with intellectual disability when thinking about getting older. This article reports on a study which explored the concept of ageing and future aspirations with 19 people living with an intellectual disability, aged 37–58 years of age (mean 48 years) and living with someone they identify as family. Using Charmaz's constructivist grounded theory approach and photo-elicitation, constant comparative analysis generated four themes: reciprocating relationships, emerging (in)dependence, configuring ageing and entertaining possibilities. As part of the interview process, photo-elicitation facilitated the expression of associations and perspectives about ageing and conceptualising the future for participants. The findings demonstrate the engagement of people with intellectual disabilities in research and provided unique insights into both their experiences and perspectives on ageing in the context of family. The need for greater flexibility in service planning and delivery are identified, alongside ensuring the meaningful inclusion of people with intellectual disability in decision-making about their own lives as they age. (Edited publisher abstract)
Self-management abilities of diabetes in people with an intellectual disability living in New Zealand
- Authors:
- HALE Leigh A., et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 8(4), December 2011, pp.223-230.
- Publisher:
- Wiley
Diabetes is more prevalent is people with intellectual disabilities than the general population. This qualitative study aimed to understand how to improve the self-management abilities of diabetes in people with an intellectual disability (ID) by exploring the understanding of diabetes held by 14 adults with ID and either type 1 or type 2 diabetes in New Zealand. Participants fell into three categories of understanding: those who had a good understanding; those who had limited understanding; and those with only a very basic understanding. While all of the participants were actively engaged in the self-management process, support from others was important, even for those with a good understanding of the disease. The authors concluded that while those with ID could be taught self-management, it was important to continue education and support throughout their lives. User-friendly teaching resources are recommended to achieve the education and support required.