Views of family carers to the future accommodation and support needs of their relatives with intellectual disabilities

Abstract

Objectives: The demand for places in supported accommodation is likely to rise due to the increasing longevity of people with intellectual disabilities and as their parents become unavailable or unable to care for them. However few attempts have been made to ascertain carer's views on alternative accommodation.Method: Four studies were undertaken in Northern Ireland to ascertain carer's views using three different methods. In all, 387 carers participated with the response being greatest for individual interviews conducted in the family home and least for self-completed questionnaires and attendance at group meetings.Results: The majority of carers envisaged the person continuing to be cared for within the family. The most commonly chosen out-of-home provision was in residential or nursing homes, living with support in a house of their own and in homes for small groups of people. Few carers chose living with another family. However only small numbers of carers envisaged alternative provision being needed in the next two years and few had made any plans for alternative living arrangements.Conclusions: The implications for service planning are noted, primarily the need for individual reviews of future needs through person-centred planning; improved information to carers about various residential options and their differential benefits, along with more services aimed at improving the quality of life of people living with family carers. These need to be underpinned by a commitment of statutory agencies to partnership working with family carers. The implications for mental health services are noted.

Fair shares? Supporting families caring for adult persons with intellectual disabilities

“…Of these, a small number (2.5% overall) were thought to require a move within the coming 24‐month period. Similar proportion of people needing to move were obtained from data gathered directly from samples of carers (McConkey et al. 2005a).…”

“…Only a small proportion of carers (7.7% overall) were reported to have a befriender for their relative although this is a service many request alongside respite breaks and in‐home support (Heller & Factor 1993; McConkey et al. 2005a).…”

Views of People with Intellectual Disabilities of Their Present and Future Living Arrangements

“…In addition to service users, information was also obtained from family carers, from key workers assigned to people in current residential settings, and from a named worker for those living independently or with family carers. This paper describes the procedures used to ascertain the views of people with intellectual disabilities and the results that were obtained; whereas, the views of other informants are documented elsewhere (McConkey et al., 2004; McConkey et al., in press).…”

A case-study of policy change in residential service provision for adult persons with intellectual disability in Ireland

“…The variety of provider agencies within Ireland—some 60 in all—could be seen as a contributor to the variation in policy implementation as up until recently, they have enjoyed a high degree of autonomy in the nature of the services they provide. In part, these organisations may also reflect the culture, values and expectations within their locality and which are reflected in the views of their staff as well as by family carers as to what they consider is “best” for people with intellectual disability (McConkey, McConaghie, Barr, & Roberts, ). Also the so‐called “neighbourhood effect” of modelling provision on what is already available within an area increases the propensity for similar styles of services (Fernandez & Forder, ).…”