The Disability Royal Commission currently in progress in Australia, was established in April 2019 in response to community concern about widespread reports of violence against, and the neglect, abuse and exploitation of, people with disability, which have happened recently or in the past.
People with dementia are people living with acquired cognitive and other disabilities [2], hence belong in the disability community, with the same rights and access to the UN Convention on the Rights of Persons with Disabilities [3].
The Disability Royal Commission will investigate preventing and better protecting people with disability from experiencing violence, abuse, neglect and exploitation, achieving best practice in reporting, investigating and responding to violence, abuse, neglect and exploitation of people with disability, and promoting a more inclusive society that supports people with disability to be independent and live free from violence, abuse, neglect and exploitation.
DAI provided a Submission, titled "Re-framing Dementia as a Disability" in which we provided background information on our organisation, which to our knowledge, is the only one that exclusively represents people with disabilities due to dementia in Australia, or globally. We provide a list of 17 suggested recommendations which we believe are crucial to preventing all forms of violence, abuse, neglect and exploitation of people with disabilities due to dementia, and for inclusion in the Commission’s Final Report and Final Recommendations.
The 17 suggested recommendations DAI asked for are listed here:
1) Governments at all levels will recognise, and advocate for people with dementia to be supported as people with acquired disabilities, including in all new research funding, and in health and social care.
2) Governments at all levels will introduce individual and collective actions for people with disability, including those living with dementia who experience violence, abuse, torture and neglect in residential, respite or community care settings, and care partners and family members who are impacted by that harm.
3) Governments at all levels will improve the recognition of, and prevention of all forms of violence, abuse, torture and neglect in residential, respite, and community care for people with disability, including people living with dementia, who experience harms, including care partners and family members impacted by that harm.
4) Governments will introduce improved reporting of violence, abuse, torture and neglect in residential aged care, respite and community care.
5) Deinstitutionalisation [4] and desegregation for all people with disabilities, including people with dementia, as recommended by the United Nations Deinstitutionalisation Guidelines. We know institutionalisation for older people and people with dementia causes harm and abuse. It is also coercive, due to the lack of alternative and accessible, dementia-enabling environmental design, the lack of support to enable community living that allows people to stay at home for longer, and the lack of small group home style accommodation when assisted living is seen as the only option. Hence we need revised models of care and accessible, environmentally designed enabling housing that increases independence and allows people to live at home.
6) Governments at all levels will introduce individual and collective actions for people with disability, including those living with dementia who experience sexual assault and abuse, and others including care partners and family members who are impacted by that harm.
a) Note, we highlight sexual assault separately, due to the current attitudes or ignorance within service providers, police and other organisations providing advocacy or care, many who do not believe it occurs, impacting reporting and access to legal processes.
7) Governments at all levels will improve the recognition of, and prevention of sexual assault in residential aged and community care for people with disability (including people living with dementia) who experience sexual assault and abuse, and others including care partners and family members who are impacted by that harm.
8) Governments will introduce improved reporting of sexual assaults in residential and community care, including mandatory acknowledgement, information, and support when assault is suspected or observed outside of the ambit of the Serious Incident Response Scheme, with a pathway to referral if the victim or their care partner or family member wishes to proceed.
9) Governments will introduce improved complaint processes victims/survivors support schemes, and specialised services for older people and people with dementia who have experienced or are at risk of experiencing sexual assault.
10) Governments to introduce individual and collective reparations that are accessible and affordable for people with disability, including people living with dementia and older people who experience any form of violence, abuse, neglect, and exploitation, including sexual assault, and others who are impacted by that harm such as care partners and family members.
11) Funding to be provided for third party advocates and organisations, to provide access to reparations, legal services, as well as counseling and support. For example, but not limited to, Victims/Survivors and their care partners and families that may require funded legal assistance, assistance with documentation and may not have access to the internet (many forms are online)
12) Governments to provide improved access to independent supported decision making, including mandatory training and accountability for substitute decision makers. This must be auditable, transparent, and outside of the ambit of current guardianship arrangements (to ensure that guardians or substitute decision makers do not block access due to real or perceived conflicts of interest). Furthermore, a pathway should be developed for people living with dementia to make an Advance Social Directive, whereby they have a voice into the future, should capacity become compromised, particularly in relation to living and social arrangements, visitors and family of choice relationships and sexual activity.
13) All disability workers must be educated in disability care and support specific to the disabilities caused by dementia, and disability rights, to ensure people with dementia in their care are provided with appropriate care and support. This includes, if a worker is supporting someone with dementia, adequate education about dementia, and the disabilities the different types of dementia can cause.
14) Disability workers and organisations providing disability services and supports through the National Disability Insurance Scheme (NDIS) to people with young onset dementia must be educated in all forms of dementia. This should include, at a minimum, the freely available University of Tasmania Wicking Institute 9-week ‘Understanding Dementia'' Massive Open Online Course (MOOC), or an alternative free course in dementia.
15) Dementia education must be provided and must include dementia as a condition causing acquired disabilities, with appropriate training on supporting cognitive and other disabilities specific to the many types or causes of dementia.
16) Finally, the NDIS must include people with dementia of all ages, as it currently discriminates against people with dementia, who are people with disabilities, over the age of 65.
Read our full submission here...
[1] https://disability.royalcommission.gov.au/about-royal-commission
[2] https://www.who.int/news-room/fact-sheets/detail/dementia