Views and Experiences of Parents of Adults with Intellectual Disabilities, Service Providers and People with Intellectual Disabilities Around Care and Social Networks in Times of Austerity

Background: People with intellectual disabilities can benefit from having meaningful relationships with people in their social networks. These networks can include family, friends and professionals, and can be vital for providing support and maintaining and improving wellbeing. Since the introduction of austerity measures in 2008, funding for care, welfare, services and support systems in the U.K. has been reduced. There is little U.K. research which explores the views and experiences of parents of adults with intellectual disabilities, service providers and people with intellectual disabilities regarding their care, relationships and social networks in times of austerity. As a result, this thesis aimed to explore these experiences in order to better understand the ways in which austerity may be perceived to impact individuals' lives from their own perspectives, and to make suggestions for future research, policy and practice.

Methodology: A systematic literature review and synthesis was carried out in order to analyse previous literature regarding the social networks of people with intellectual disabilities (Chapter Two). Mixed methods research approaches were then used to undertake three empirical studies. Chapter Four presents the findings and conclusions regarding interviews with ten parents of adult children with intellectual disabilities. Chapter Five considers the responses of nine professionals who provide services to adults with intellectual disabilities. Finally, analysis of the responses of 150 people with intellectual disabilities are presented in Chapter Six.

Results: Theories of stigma, normalisation and care ethics were used to better understand reported experiences and effects of austerity. The experiences of parents, service providers and people with intellectual disabilities suggested that austerity was felt to negatively impact on relationships, care and social networks. Under austerity, distance was experienced in relationships with Local Authorities and their workers. Systems were felt to have been designed to create and maintain this distance. Participants in each study reported feeling misunderstood and uncared about, and that their lives, identities and wellbeing were all negatively impacted by the effects of austerity. Relationships with Local Authorities and their workers were experienced as having become (more) adversarial, with each group of participants reporting feeling the need to fight against cuts, against being given stigmatised identities and against false assumptions being made about them. Loss was experienced around relationships. The care and social networks both of people with intellectual disabilities and of parents were felt to be being diminished. Improvements under earlier policies based on normalisation principles were felt to have been lost; practice and attitudes were instead felt to be regressing to historically poor levels. Under austerity the purpose, experiences and effects of reassessment were all experienced as disabling people with intellectual disabilities.

Conclusion: This study makes suggestions for improvements in policy, practice and research. An evaluation of the financial and emotional impacts of austerity is recommended in order that governments and Local Authorities can better understand the impacts of their decisions. Policy being written in partnership with people with intellectual disabilities, parents and service providers could promote a care ethics approach. This could be strengthened by a promise from governments that appropriate support will be funded and provided to people with intellectual disabilities throughout their lifetimes. Training of government and Local Authority staff by people with intellectual disabilities, parents and service providers could challenge stigma and aid the development of policies and practices which understand and meet the needs of people with intellectual disabilities and those who support them. A care advocacy collective could also be instrumental in promoting these changes. Longitudinal research which includes the experiences of people with significant intellectual impairments, those who have experienced no deterioration in their relationships with Local Authority workers and importantly, the experiences of assessors making judgements about eligibility for care would add to our understandings of the ways in which experiences of care and social networks could be improved.