Caring for the carer: home design and modification for carers of young people with disability

This HMinfo Occasional Research Paper focuses on carers, that is those who deliver informal (unpaid) care to young people with disability, and particularly those carers who share their home with the person they are caring for, as well as the housing design considerations that may support carers in their caring role. In this report, paid carers are referred to as support workers, and their role is clearly differentiated from that of carers, who are unpaid. It should also be noted that many people with disability are themselves the carer for a partner or family member. Both carers, who are usually family members or partners, and support workers, who are paid to provide care to a person with disability, need supportive and safe environments in which to care for people with disability. The definition of a carer is: “A person of any age who provides any informal assistance, in terms of help or supervision, to persons with disabilities or long-term conditions, or older persons (i.e. aged 60 years and over). This assistance has to be ongoing, or likely to be ongoing, for at least six months.”. This research adopts a definition of disability that understands it as the product of interaction between an individual and their environment. Whether or not a particular physical condition is experienced as disabling depends on the natural and built environment, social, political and cultural structures, and interpersonal processes of the individual concerned. In addition, Eley et al highlight that both people with intellectual disability and their carers are ageing, and the concurrent ageing of these groups poses specific challenges in providing suitable housing. For the purpose of this research, the concept of ‘care’ is defined as the provision of assistance to a person with disability or chronic health condition or frail older person, to ensure their health, safety and wellbeing. Care is generally triaged into: • formal care delivered by waged staff or trained volunteers • informal care delivered by unpaid carers, usually family members; or • self-care, a newly evolving conceptual category that will be referenced in this report insofar as it impacts on the degree of care provided by carers. The ABS describes self-care as the capacity to undertake tasks associated with: showering or bathing; dressing; eating; toileting; and bladder or bowel control. This HMinfo Occasional Research Paper will focus on the unpaid (informal) carers of young people with disability (