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

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.

Keywords:

• Accommodation
• Australia
• carers
• disability support
• family
• policy
• qualitative research

Disclosure statement

The authors report no conflicts of interest.

Funding

The first author was a recipient of a PhD scholarship provided by Youngcare.