Experience of Choice and Control for Service Users and Families of Direct Payments in Residential Care Trailblazers

Abstract

Context: Direct payments (DP) -cash for care -have been promoted in England as a mechanism to enhance the choice and control of service users living in community settings who are eligible for statefunded care. In 2011, the government decided to pilot DPs in residential care in a few areas and to commission an evaluation of the pilot programme. Objective: To explore the experiences of care home residents and their families offered a DP, in terms of choice of and control over their care and of their consumer power in local care home markets. Methods: We held 34 semi-structured interviews with care home residents and family members as part of the evaluation. Interviews were analysed using the "Antagonisms of Choice" framework to study the frictions caused by promoting self-directed care via private market mechanisms within publicly funded systems. Findings: Findings suggest unequal access to DPs according to residents' access to family networks, level of cognitive function and underlying physical health. Some participants expressed concern about the effects of DPs on quality of care home services. Several family members using DPs perceived enhanced power in relation to the care providers; others saw no benefit from DPs. Limitations: Uptake of DPs was lower than expected, potentially limiting the generalisability of these findings.

Do Cash-For-Care Schemes Increase Care Users’ Experience of Empowerment? A Systematic Review

“…Moreover, some care users deliberatively choose not to use a cash-for-care scheme, as they expect it to be too difficult to manage or feel overwhelmed by the responsibilities of managing a budget [35,41,50,51,57,60,63,68,71,76,81,101,114,117]. However, this feeling can change over time: almost one quarter of the articles (23%) reported increased feelings of empowerment as care users became more competent and confident over time, learning to manage their responsibilities as budget holders [35, 38, 39, 42-44, 50, 52, 59, 61-63, 84, 85, 91, 96, 105, 111, 116, 117, 121] 4.2.3.…”

“…Self-determination All but one [47] of the articles discussed the feeling of self-determination, or the lack thereof, in care users . These studies indicate that cash-for-care schemes can be a mechanism for enhancing self-determination if certain contextual conditions are in place-for example access to information and support [35,41,48,51,54,59,60,81,117]. When these conditions are met, care users are able to choose their care provider, weigh alternatives against each other, and select services that match their needs and preferences.…”

“…Some of these articles (43%) describe how society and the care network tend to impose the views of normal, nondisabled bodies on care users, which leads to deeply rooted assumptions about the capabilities and skills of care users and to the exclusion of care users from life domains. For example, assumptions about the capacity (skills, emotional resources, and resilience) of older people to become a budget holder or to manage a budget [41,53,63,70,77,80,102,112,114], assumptions about the capacity of people with intellectual disabilities to have a job [49,61,87,92,107], or failing taking into account the transportation needs that people with disabilities have if they are to participate in society [49,104,120,121]. Moreover, one-third of the articles (37%) mention that informal and professional caregivers can restrict access to cash-for-care schemes or take over decision-making processes based on such ideas of the care user's incapability and need for protection.…”

“…Moreover, one-third of the articles (37%) mention that informal and professional caregivers can restrict access to cash-for-care schemes or take over decision-making processes based on such ideas of the care user's incapability and need for protection. These negative attitudes lead to a reduction in the feeling of empowerment on the part of the care user [41,44,47 Additionally, almost half of the articles (48%) discuss the lack of a holistic focus from care providers. The care user and his or her needs, strengths, abilities, and family context should be taken into account when determining how the budget will be spent.…”

“…However, in some schemes, the informal caregiver becomes the focal point of attention instead of the care user. Since the informal caregiver is using and directing the budget, professional caregivers can become sensitive to the needs of and demands on the informal caregiver, discussing the care arrangements solely with the informal caregiver and thus ignoring the needs of the actual beneficiary of the budget, the care user [41,42,103,116,119]. Another important remark is that care users' needs have to be assessed in the context of their family life, since family members often support the care user.…”