that while national differences in supports to carers exist, generally, the supports available are often fragmented and inadequate. Supporting carers becomes even more urgent in the context of COVID-19. Supports normally available in the community (such as various forms of respite care for carers) may suddenly become unavailable. Older adults with serious illnesses or disabilities who normally reside in congregate settings such as long-term care (LTC) homes may need to reside with family members temporarily due to outbreaks in LTC homes. As we prepare for the
27 TWO Dementia as a disability Introduction In Chapter One, the topic of human rights and dementia was introduced, and it was shown that dementia is a human rights issue since the individual diagnosed can experience injustice, inequality and marginalization. As I argue in later chapters, once diagnosed a person may encounter discrimination, segregation and social exclusion (Cantley and Bowes, 2004), their autonomy can be compromised (Boyle, 2008), and opportunities to exercise choice and control in decisions directly relevant to their lives may be denied
give or receive care ( Knijn and Kremer, 1997 ). At the heart of this exclusion is the value (or lack thereof) placed upon care and its association with the private domain. Tronto (1993) suggests that the inability to think of care outside of privatised and gendered terms is not a failure of care, but a constraint in the social contexts in which caring practices occur in society. Exclusionary practices particularly affect women with disabilities, whose parental rights are not always recognised. For many mothers with disabilities, especially those with intellectual
273 International Journal of Care and Caring • vol 2 • no 2 • 273–77 • © Policy Press 2018 Print ISSN 2397-8821 • Online ISSN 2397-883X • https://doi.org/10.1332/239788218X15224823740266 debates and issues THEMED ISSUE • Variations and innovations in care and care work: Critical perspectives User-controlled personal assistance – the case of persons with intellectual disabilities Anne-Britt Horn Hanssen, abhh@oliviaassistanse.no Head of Olivia Assistance, Norway Sidsel Maxwell Grasli, smg@oliviaassistanse.no Senior Advisor, Olivia Assistance, Norway key words
587 International Journal of Care and Caring • vol 2 • no 4 • 587–93 • © Policy Press 2018 Print ISSN 2397-8821 • Online ISSN 2397-883X • https://doi.org/10.1332/239788218X15411706368334 debates and issues Underpricing care: a case study of Australia’s National Disability Insurance Scheme Natasha Cortis, n.cortis@unsw.edu.au University of New South Wales, Australia Fiona Macdonald, Fiona.macdonald@rmit.edu.au RMIT University, Australia Bob Davidson, bob.davidson@mq.edu.au Macquarie University, Australia Eleanor Bentham, eleanor.bentham@rmit.edu.au RMIT
Introduction Older adults living with disabilities in Canada often require assistance from a relative or friend (that is, a family carer) ( Kokorelias et al, 2020 ). Based on 2012 estimates, 13.7 per cent of the Canadian population (4.8 million Canadians) lived with disabilities ( Statistics Canada, 2013 ) and 28 per cent of the population (9.7 million Canadians) aged 15 and above provided unpaid care to a family member, friend or neighbour ( Fast, 2015 ). While 74 per cent of carers spent under ten hours per week on care, 10 per cent of them provided unpaid
575 International Journal of Care and Caring • vol 2 • no 4 • 575–80 • © Policy Press 2018 Print ISSN 2397-8821 • Online ISSN 2397-883X • https://doi.org/10.1332/239788218X15411706605330 debates and issues ‘Special mothers’ in Ireland: gender, identity and the social construction of caring for a relative with an intellectual disability Mary Cronin, maryecronin@gmail.com National University of Ireland Maynooth, Ireland Gender balance in caring is heavily skewed towards women providing the majority of care. This is particularly evident in literature relating
The time has come to further challenge biomedical and clinical thinking about dementia, which has for so long underpinned policy and practice. Framing dementia as a disability, this book takes a rights-based approach to expand the debate.
Applying a social constructionist lens, it builds on earlier critical perspectives by bringing together concepts including disability, social inclusion, personhood, equality, participation, dignity, empowerment, autonomy and solidarity. Launching the debate into new and exciting territory, the book argues that people living with dementia come within the UN Convention on the Rights of Persons with Disabilities and therefore have full entitlement to all the rights the Convention enshrines.
A human rights-based approach has not to date been fully applied to interrogate the lived experience and policy response to dementia. With the fresh analytical tools provided in this book, policy makers and practitioners will will gain new insights into how this broader perspective can be used to further promote the quality of life and quality of care for all those affected by dementia.
Introduction Support coordination refers to assistance provided to effectively navigate and implement cohesive and collaborative services and supports across various systems and sectors. For people with disability and complex needs, it should optimise service provision coordination and reduce the risk of inadequate and inefficient services. If appropriately designed and performed, support coordination should lead to: better understanding of individual need; informed choices about appropriate providers; stronger relationships and communication with service
47 THREE Setting the context: The UN Convention on the Rights of Persons with Disabilities Too often, those living with disabilities have been seen as objects of embarrassment and at best of condescending pity and charity … on paper they have enjoyed the same rights as others; in real life they have often been relegated to the margins and denied the opportunities that others take for granted. (Kofi Annan, 2006) Introduction In the opening chapters of this book I have argued that dementia is both a human rights issue (Chapter One) and a disability
