ABSTRACT
Context: UK austerity measures following the 2008 financial crisis included budget reductions for health and social care. We aimed to investigate the extent to which austerity-measures had impacted the lives of people with intellectual disabilities in England, and whether their support costs were associated with their characteristics, needs and outcomes. Objectives: We report on what services people with intellectual disabilities were using, whether they had lost care, the costs of their support, and what impact any loss of benefits and services had on individuals’ lives. Methods: 150 participants with intellectual disabilities across England were interviewed about their services and their well-being. Service and individual support costs were calculated. Statistical and thematic analyses were employed. Results: The largest proportion (42%) of our sample had lost care. 14% had experienced changed care, and care had remained the same for 36%. Only 7% said their care had improved. No associations were found between costs and characteristics and needs except for whether the person had mild or severe intellectual disabilities. Those who had lost care engaged in fewer activities and had significantly lower self-esteem and quality-of-life scores compared with those who had not lost care. Loss of care impacted on individuals’ independence and future aspirations. Limitations: A comparative study of austerity impacts across the whole of England was not possible. Our costs data may be underestimated because full information on support from home, key, or support workers was unavailable. Implications: In attempting to mitigate against COVID-19 impacts on people with intellectual disabilities, policy-decisions will need to consider the backlog of a decade of cuts. © 2021 The Author(s). cial-NoDerivs 3.0 Unpor.
ABSTRACT
Background: People with intellectual disabilities (ID) have worse health outcomes and face inequalities at the end of life. It is not clear how Covid-19 has affected end of life care. Aim: To gain insight into the perceived COVID19 related changes in provision, quality and challenges of palliative and end-of-life care to people with ID in countries across the world. Method: An international anonymous online survey, aimed at health/ social care professionals, was developed by 15 researchers from 10 countries (part of the EAPC Reference Group on Intellectual Disabilities). It was based on the 2015 EAPC White Paper on ID describing 13 good practice norms. Data were analysed using descriptive statistics, with content analysis of free text. Results: 471 respondents from 19 countries completed the survey between Oct 2020-Mar 2021 (88% health/social care professionals, 12% academic/educators). North West Europe was over-represented, but responses were received from other countries including USA, Australia and Asia. Areas of end-of-life care most frequently reported as less in line with the 13 investigated norms were 'adequate bereavement support for people with ID' (40%) and 'adequate training/support for healthcare staff' (40%). Areas showing the greatest concordance with these norms were 'access to hospital care when needed' (62%) and 'families involved in end-of-life decisions' (50%). Areas that most respondents reported as worse during the pandemic were 'people with ID attending funerals' (57%), 'opportunities for families to be involved in care' (49%) and 'adequate support from health/social care professionals for the end of life needs of people with ID' (41%). Conclusion: There are significant challenges in providing end of life care for people with ID, these have been exacerbated by Covid-19. This survey provides important indicators for developing policy, practice and research priorities, and is a starting point for further research.