Experiences of adults with high-care needs and their family members with housing and support pathways in Australia

McIntyre, Deborah, Fleming, Jennifer, Foster, Michele and Tweedy, Sean (2016) Experiences of adults with high-care needs and their family members with housing and support pathways in Australia. Disability and Rehabilitation, 39 18: 1-11. doi:10.1080/09638288.2016.1212108


Author McIntyre, Deborah
Fleming, Jennifer
Foster, Michele
Tweedy, Sean
Title Experiences of adults with high-care needs and their family members with housing and support pathways in Australia
Journal name Disability and Rehabilitation   Check publisher's open access policy
ISSN 1464-5165
0963-8288
Publication date 2016-09-23
Year available 2017
Sub-type Article (original research)
DOI 10.1080/09638288.2016.1212108
Open Access Status Not yet assessed
Volume 39
Issue 18
Start page 1
End page 11
Total pages 11
Place of publication Abingdon, Oxfordshire, United Kingdom
Publisher Taylor & Francis
Language eng
Subject 2742 Rehabilitation
Abstract Purpose: Many adults aged less than 65 years with high-care needs resulting from acquired disabilities are unable to access age-appropriate housing and support, and reside in residential aged care or live with family members who may struggle to navigate the disability support system. This qualitative study aimed to investigate the experiences of adults with high-care needs and their family members regarding pathways related to housing and support. Method: Two in-depth semi-structured interviews were conducted six months apart with 21 people aged 18 to 65 with high-care needs of varying etiology and living in different housing settings. Nineteen family members involved in decision-making about housing and supports were also interviewed. Results: Thematic data analysis yielded five themes: (1) Traveling in different directions; (2) “the fight, the battle and the war”; (3) willing but wanting; (4) uncertainty and vulnerability; and (5) redefining social roles and relationships. Conclusions: Current disability policy is not satisfying the housing and support requirements of adults with high-care needs and their families. The findings provide rigorous, empirical evidence which indicate the urgent need to improve access to affordable, individualized housing and support packages, including financial, practical and informational support for family members involved in caring roles. Implications for Rehabilitation Individual preferences are an important consideration in housing and support arrangements for younger people with high-care needs alongside needs-based solutions. Individualized funding approaches may provide flexibility of care and choice in housing and support for people with disability. Family members willingly provide substantial informal care, support and advocacy for younger people with high needs but perceive their role as a constant “battle”. Payment of family members in recognition of caring work was perceived as a solution to relieve family hardship and ensure optimal care.
Formatted abstract
Purpose: Many adults aged less than 65 years with high-care needs resulting from acquired disabilities are unable to access age-appropriate housing and support, and reside in residential aged care or live with family members who may struggle to navigate the disability support system. This qualitative study aimed to investigate the experiences of adults with high-care needs and their family members regarding pathways related to housing and support.

Method: Two in-depth semi-structured interviews were conducted six months apart with 21 people aged 18 to 65 with high-care needs of varying etiology and living in different housing settings. Nineteen family members involved in decision-making about housing and supports were also interviewed.

Results: Thematic data analysis yielded five themes: (1) Traveling in different directions; (2) “the fight, the battle and the war”; (3) willing but wanting; (4) uncertainty and vulnerability; and (5) redefining social roles and relationships.

Conclusions: Current disability policy is not satisfying the housing and support requirements of adults with high-care needs and their families. The findings provide rigorous, empirical evidence which indicate the urgent need to improve access to affordable, individualized housing and support packages, including financial, practical and informational support for family members involved in caring roles.

Implications for Rehabilitation:

• Individual preferences are an important consideration in housing and support arrangements for younger people with high-care needs alongside needs-based solutions.
• Individualized funding approaches may provide flexibility of care and choice in housing and support for people with disability.
• Family members willingly provide substantial informal care, support and advocacy for younger people with high needs but perceive their role as a constant “battle”.
• Payment of family members in recognition of caring work was perceived as a solution to relieve family hardship and ensure optimal care.
Keyword Accommodation
Australia
Carers
Disability support
Family
Policy
Qualitative research
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status UQ

 
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Created: Wed, 05 Oct 2016, 19:46:55 EST by Sandrine Ducrot on behalf of Learning and Research Services (UQ Library)