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Protecting the Right to Social Participation of Older Persons in Long-Term Care

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Rachel Morrison-Dayan discusses how the COVID-19 pandemic has highlighted social isolation and loneliness among older people in residential long-term care.

Image courtesy of interviewee. February 8, 2024

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This video video discusses the challenges of social isolation and loneliness faced by older adults in long-term care settings, emphasizing the need for better protection of their right to social participation under international human rights law. It defines long-term care as assistance with daily activities outside of the home and highlights the importance of social connections for mental and emotional well-being.

It points out that older women are particularly affected due to their higher representation in care facilities and longer life expectancy. This video video references Article 19 of the Convention on the Rights of Persons with Disabilities, which mandates that states support independent living and community inclusion, thus applying to older persons in aged care.

Various barriers to social participation are identified, including frailty, lack of access to technology, and insufficient staffing and training in care facilities. It notes the detrimental health effects of isolation, equating them to significant physical health conditions.

This video video advocates for individualized approaches in aged care that respect the autonomy and preferences of older individuals, suggesting practical measures such as homelike environments, community integration, better staffing, and use of assistive technologies for communication.

Lastly, it calls for comprehensive actions involving legislation, policy changes, community awareness, and interdisciplinary research to effectively combat loneliness and ensure meaningful social participation for older people in care settings. It emphasizes the need for a culture shift in the aged care sector to enhance the rights and quality of life for older adults.

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X-TIMESTAMP-MAP:LOCAL=00:00:00.000,MPEGTS=900000

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Many older people living in long-term care settings

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experience social isolation and loneliness,

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and their right to continue accessing opportunities

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for social participation needs better protection

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through international human rights law.

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So by residential long-term care, I mean care

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provided outside of the home in activities of daily living,

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such as being helped in the shower, help with eating,

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mobility such as getting out of bed

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and accessing, the dining room or the garden.

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And by social participation, I mean, opportunities

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to engage in activities which provide, connection

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with others, interaction with others.

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And, the issue of social

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participation in long-term care is extremely,

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increasingly significant in an aging population,

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an aging global population.

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And this issue does in, does affect women disproportionately

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as they're overrepresented,

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overrepresented in long-term care due to their,

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for many reasons, including their, long,

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their longer life expectancy

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and the, less likelihood that their cared at home,

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cared for by a spouse at home.

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So international human rights law,

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including the convention on the rights of Persons

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with disabilities, the Disabilities Convention,

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and in particular, article 19, living independently

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and in the community can be applied to the aged care context

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to better protect old person's right

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to social participation.

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In short, article 19 requires states

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to facilitate full inclusion

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and participation in the community.

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They need to ensure that the person can make individual

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choices about where

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and how they live, including their place of residence,

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daily routine, personal assistance, personal relationships,

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such that institutional living

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and rigid routines, which limit the choices

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that older people can make about their living arrangements

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are not acceptable.

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Article 19 also requires states

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to facilitate individualized assistance to support living

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and including and inclusion in the community

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and the availability of community services and facilities.

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For many people in residential aged care suffer from

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loneliness and depression,

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and women are overrepresented in aged care, as I said.

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And so both ageism

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and gender discrimination are relevant factors here.

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Older persons lack opportunities for social relationships

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for a number of reasons, including their frailty

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and the restrictive and closed nature of their environment

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or segregation from the community.

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They may also lack access to technology

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because they don't have that kind

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of technological know-how perhaps,

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or they lack staff assistance, for instance,

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Skype or internet chatting apps.

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Um, they may not have, the, the eyesight

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or the, hearing

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or other skills, to be able

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to make the best use of that technology.

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And furthermore, many older people

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are on psychotropic medicines such as antipsychotics

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or benzodiazepine medicines, for instance.

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And, and this along with perhaps other issues such

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as unmanaged pain or poor sleep

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or fear of falls, for example, may decrease their desire

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or ability to interact socially.

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Other factors, which adversely impact on opportunities

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for social participation include high staff turnover,

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poor staff training,

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and low staff to resident ratios,

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which do impact on the quality of care

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and the time that care workers have to, spend with,

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with, with people and to deliver person centered care

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and enhance social opportunities.

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We all remember the isolation endured by many people

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during the COVID-19 pandemic, brought a lot

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of public attention, to both the consequences

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of social isolation and the importance of social connection,

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and also the failings of long-term care.

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In the 13th session

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of the Open-ended working group on Aging in 2023,

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the United Nations Department of Economic

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and Social Affairs noted the continued segregation

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of older people from their communities.

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And reasons for this included the unpreparedness

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of institutions to facilitate social participation.

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This is really concerning as social isolation

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and loneliness, serious matters.

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Research has indicated

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that the health consequences can be similar in magnitude

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to conditions like diabetes and obesity.

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Some of the health effects are poorer, cardiovascular,

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brain and immune health, depression and anxiety

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and cognitive decline.

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So there isn't a specific right

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to social participation in human right treaties.

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Although social participation does broadly relate

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to other rights in core international treaties involving

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accessing education, employment, and healthcare.

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Some non-binding in international instruments dealing

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specifically with our older person's issues have

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recognized the continuing need for social participation

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such as the UN principles for older persons

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and the world Assemblies on Aging.

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But better protection is needed

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while treaty is relevant to protecting the right

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to social participation in aged care

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include the International Covenant on economic, cultural

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and social rights, especially the right to health

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or the elimination of all forms

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of discrimination against women with a higher number

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of women in aged care.

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The Disabilities Convention is particularly relevant

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to older people receiving aged care.

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But this convention is underappreciated in the aged care

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context as policy makers

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and service providers don't often define aged care services

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as disability services.

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However, the convention has considerable potential in

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raising awareness of social isolation

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and loneliness in aged care facilities as human right

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at human rights matters,

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and protecting the right to social participation

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if properly implemented.

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Human rights mechanisms should elaborate further

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on the relevance of the Disabilities Convention specifically

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to older persons in long care, long-term care.

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And especially as these, issues become more important

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as the population ages.

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So human rights mechanisms have explicitly confirmed the

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applicability of the Disabilities Convention

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to the Aged Care context.

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Um, in a 2019 Report on Aging a Disability Special

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Rapporteur on the Rights of Persons with disabilities,

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Catalina dus Aula elaborated on the applicability

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of the Disabilities Convention, including Article 19

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to older persons with age related disabilities.

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And both dus Aula

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and the current special Rapporteur Gerard Quinn have

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emphasized the need for transformation

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of institutional forms of care

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for older people within the dis within,

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with disabilities and for states to provide so services

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and support within the community.

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So in its general comment number five, adopted in 2017,

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the Committee on the Rights of Persons with Disabilities

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and also the Office

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of the United Nations High Commissioner for Human Rights.

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In a 2014 thematic thematic study

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acknowledged the applicability of Article 19

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to older persons as well,

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and the European Network

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of National Human Rights Institutions

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and other scholars have also discussed the application

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of nine of Article 19 in the long-term care context.

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There's, there's been some useful proposals,

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in the work of the Open-ended working group on aging

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relating to draft state obligations on social

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participation in long-term care, reflecting the obligations

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of Article 19 of, of the Disabilities Convention,

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the World Alzheimer's Report 2020

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includes recommendations about dementia related design

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and the built environment.

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And this addresses weakness in human rights awareness within

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the architecture profession of the need

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to protect vulnerable groups

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and meaningfully involved, impacted parties in design,

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which can create an environment that is more conducive

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to social participation in respecting, protecting

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and fulfilling the rights.

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In Article 19 in aged Care states should ensure

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that these rights are reflected adequately

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through legislation policy, regularly re regulatory measures

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and monitoring of what's going on

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and the need for further changes.

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States must also ensure that

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that third party aged care providers uphold the standards in

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the disabilities convention

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and should focus on instigating deeper cultural changes

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within provider organizations to achieve this

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and the general community, as well

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as increasing opportunities for older people

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to participate meaningfully in decision making about their

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living arrangements, care and support.

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So what are some of the ways

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that Article 19 can be applied prac practically?

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Well, it's important that older,

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that older persons can choose to live in home-like settings

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with sufficient staffing, which allow them

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to maintain choice about their daily life

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and community connection,

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and are not forced into institutional living arrangements

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with rigid routines.

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Undertaking everyday activities in home-like environments

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can present social opportunities such as meal preparation

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or even just dusting or polishing ornaments

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and having a chat together in relation

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to environmental factors, natural light views to the

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outside, open plan kitchens as well

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as outdoor gardens

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and cafes can create welcoming environments for residents

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and visitors, and thereby facilitate social participation.

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Options, of course, vary between countries and settings.

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The provision of sufficient staff skills mix

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and training, including about the human rights

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of older persons is, is important in ensuring quality care

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and assisting older people to be socially involved.

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Staff assistance is important for personalized

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or group transport

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or activities with other people at the setting, such

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as intergenerational activities

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or volunteer programs where people of all ages can get

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to know each other, share their life experiences

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and discover common interests.

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Some cultural specific age care settings can foster a sense

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of community quite well, interaction

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with nature and pets, music, art, culture,

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reminiscence therapy, and physical activities such

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as hand massage, reflexology,

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or aroma therapy are also great ways to,

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inspire social participation.

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Assistance with communication is also

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important with the use.

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Um, such as with the use of technology

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and supporting communication may also include other

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measures, such as teaching of simple sign language to,

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to both staff and older people.

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Um, this could include words such as cup of tea, shower,

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happy or sad or bored.

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Um, that's just a few, words from,

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Australian sign language, called Auslan.

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Uh, so this could be very useful in aiding communication

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where older people suffer from.

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Uh, many, many people,

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who are old suffer from hearing loss,

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where understanding is even more difficult,

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when infection control masks such as with COVID-19,

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or other illnesses are worn,

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or where voices are are weak,

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or accents are difficult to understand.

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So all levels

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of government should be involved in making community

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services and facilities more accessible.

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And this could inc include, for example, better walking

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pathways between aged care settings and local parks

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and shops and accessible transport

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and the placement of community facilities

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near aged care settings.

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There are many challenges though in facilitating social

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participation, including the frailty

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of many persons living in age care

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and conditions like dementia.

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And there's also the need for specialized staff

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and environmental design

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and a range of practical considerations.

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There's also the need to balance different human rights,

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such as those involving autonomy and liberty

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and the need for protective measures.

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The challenges and dilemmas

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of applying the disabilities convention, including what

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deinstitutionalization should look like specifically in aged

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care and even matters like the extent of incorporation

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of technology such as robotics.

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They need further elaboration by human rights mechanisms

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and consultation with different stakeholders.

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There are many other articles of the disabilities convention

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that interact with, with Article 19, for example,

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article 26, which also relates

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to social re rehabilitation and relationship building

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and overcoming stereotypical views of people living

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with dementia and their capacity

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to engage in rehabilitative, re rehabilitative therapies

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and the recognition of older person's legal capacity under

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Article 12, including people, with dementia relating

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to support of decision making.

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Article five, equality

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and non-discrimination, which obliges states

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to prohibit discrimination on the basis of disability,

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where discrimination may take the form of segregation

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or social barriers

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or paternalistic, approaches

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to care which limit autonomy and erode identity.

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And there's also a need for greater community awareness

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of issues facing older people, under Article eight,

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through educational campaigns including dementia awareness.

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Um, and this can help our family members, particularly,

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when, when their family member may, acquire dementia

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and go into a f facility so that visits don't drop off.

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Um, if they can receive some education, on how

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to communicate, to make, visits, you know,

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be better for, for everyone the disabilities Convention

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and Article 19 in particular offers an important opportunity

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to protect the right of social participation in aged care.

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And this need is gaining importance in an aging population.

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In adopting human rights standards, state should ensure

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that older persons are

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provided with meaningful opportunities for social

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participation by facilitating choice in living arrangements

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such as smaller homelike settings with sufficient staff

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and individual assistance to support the pursuance

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of meaningful connections, as well as greater access

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to community services and facilities.

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This will require a range of measures including leisure,

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legislative policy, and regulatory, measures

16:38.285 --> 16:39.685
and adequate monitoring

16:39.945 --> 16:42.005
and working towards cultural change

16:42.395 --> 16:46.165
with the aged care sector, and also involving older persons

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and groups, which represent them in related decision making

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about living arrangements, care and support.

16:52.825 --> 16:54.565
And raising community awareness

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to encourage greater understanding of closer connections

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and the need for closer connections between older persons

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and younger generations is also crucial.

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And of course, more interdisciplinary research

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and dialogue is needed on the ways to tackle loneliness

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and social isolation in aged care,

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and how the disabilities convention can be implemented in

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this context to best protect the rights of older persons.

00:00 - Many older people living in long-term care settings experience social isolation and loneliness, and their right to continue accessing opportunities for social participation needs better protection through international human rights law. So by residential long-term care, I mean care

00:19 - provided outside of the home in activities of daily living, such as being helped in the shower, help with eating, mobility such as getting out of bed and accessing, the dining room or the garden. And by social participation, I mean, opportunities to engage in activities which provide, connection with others, interaction with others. And, the issue of social participation in long-term care is extremely, increasingly significant in an aging population,

00:52 - an aging global population. And this issue does in, does affect women disproportionately as they're overrepresented, overrepresented in long-term care due to their, for many reasons, including their, long, their longer life expectancy and the, less likelihood that their cared at home, cared for by a spouse at home. So international human rights law, including the convention on the rights of Persons

01:23 - with disabilities, the Disabilities Convention, and in particular, article 19, living independently and in the community can be applied to the aged care context to better protect old person's right to social participation. In short, article 19 requires states to facilitate full inclusion and participation in the community. They need to ensure that the person can make individual choices about where

01:54 - and how they live, including their place of residence, daily routine, personal assistance, personal relationships, such that institutional living and rigid routines, which limit the choices that older people can make about their living arrangements are not acceptable. Article 19 also requires states to facilitate individualized assistance to support living and including and inclusion in the community and the availability of community services and facilities.

02:29 - For many people in residential aged care suffer from loneliness and depression, and women are overrepresented in aged care, as I said. And so both ageism and gender discrimination are relevant factors here. Older persons lack opportunities for social relationships for a number of reasons, including their frailty and the restrictive and closed nature of their environment or segregation from the community. They may also lack access to technology

03:02 - because they don't have that kind of technological know-how perhaps, or they lack staff assistance, for instance, Skype or internet chatting apps. they may not have, the, the eyesight or the, hearing or other skills, to be able to make the best use of that technology. And furthermore, many older people are on psychotropic medicines such as antipsychotics

03:30 - or benzodiazepine medicines, for instance. And, and this along with perhaps other issues such as unmanaged pain or poor sleep or fear of falls, for example, may decrease their desire or ability to interact socially. Other factors, which adversely impact on opportunities for social participation include high staff turnover, poor staff training, and low staff to resident ratios, which do impact on the quality of care

04:00 - and the time that care workers have to, spend with, with, with people and to deliver person centered care and enhance social opportunities. We all remember the isolation endured by many people during the COVID-19 pandemic, brought a lot of public attention, to both the consequences of social isolation and the importance of social connection, and also the failings of long-term care. In the 13th session of the Open-ended working group on Aging in 2023,

04:35 - the United Nations Department of Economic and Social Affairs noted the continued segregation of older people from their communities. And reasons for this included the unpreparedness of institutions to facilitate social participation. This is really concerning as social isolation and loneliness, serious matters. Research has indicated that the health consequences can be similar in magnitude to conditions like diabetes and obesity.

05:06 - Some of the health effects are poorer, cardiovascular, brain and immune health, depression and anxiety and cognitive decline. So there isn't a specific right to social participation in human right treaties. Although social participation does broadly relate to other rights in core international treaties involving accessing education, employment, and healthcare. Some non-binding in international instruments dealing specifically with our older person's issues have

05:45 - recognized the continuing need for social participation such as the UN principles for older persons and the world Assemblies on Aging. But better protection is needed while treaty is relevant to protecting the right to social participation in aged care include the International Covenant on economic, cultural and social rights, especially the right to health or the elimination of all forms of discrimination against women with a higher number

06:17 - of women in aged care. The Disabilities Convention is particularly relevant to older people receiving aged care. But this convention is underappreciated in the aged care context as policy makers and service providers don't often define aged care services as disability services. However, the convention has considerable potential in raising awareness of social isolation and loneliness in aged care facilities as human right

06:49 - at human rights matters, and protecting the right to social participation if properly implemented. Human rights mechanisms should elaborate further on the relevance of the Disabilities Convention specifically to older persons in long care, long-term care. And especially as these, issues become more important as the population ages. So human rights mechanisms have explicitly confirmed the applicability of the Disabilities Convention

07:22 - to the Aged Care context. in a 2019 Report on Aging a Disability Special Rapporteur on the Rights of Persons with disabilities, Catalina dus Aula elaborated on the applicability of the Disabilities Convention, including Article 19 to older persons with age related disabilities. And both dus Aula and the current special Rapporteur Gerard Quinn have emphasized the need for transformation of institutional forms of care

07:55 - for older people within the dis within, with disabilities and for states to provide so services and support within the community. So in its general comment number five, adopted in 2017, the Committee on the Rights of Persons with Disabilities and also the Office of the United Nations High Commissioner for Human Rights. In a 2014 thematic thematic study acknowledged the applicability of Article 19 to older persons as well,

08:25 - and the European Network of National Human Rights Institutions and other scholars have also discussed the application of nine of Article 19 in the long-term care context. There's, there's been some useful proposals, in the work of the Open-ended working group on aging relating to draft state obligations on social participation in long-term care, reflecting the obligations of Article 19 of, of the Disabilities Convention, the World Alzheimer's Report 2020

08:56 - includes recommendations about dementia related design and the built environment. And this addresses weakness in human rights awareness within the architecture profession of the need to protect vulnerable groups and meaningfully involved, impacted parties in design, which can create an environment that is more conducive to social participation in respecting, protecting and fulfilling the rights. In Article 19 in aged Care states should ensure

09:28 - that these rights are reflected adequately through legislation policy, regularly re regulatory measures and monitoring of what's going on and the need for further changes. States must also ensure that that third party aged care providers uphold the standards in the disabilities convention and should focus on instigating deeper cultural changes within provider organizations to achieve this and the general community, as well

09:57 - as increasing opportunities for older people to participate meaningfully in decision making about their living arrangements, care and support. So what are some of the ways that Article 19 can be applied prac practically? Well, it's important that older, that older persons can choose to live in home-like settings with sufficient staffing, which allow them to maintain choice about their daily life and community connection,

10:29 - and are not forced into institutional living arrangements with rigid routines. Undertaking everyday activities in home-like environments can present social opportunities such as meal preparation or even just dusting or polishing ornaments and having a chat together in relation to environmental factors, natural light views to the outside, open plan kitchens as well as outdoor gardens and cafes can create welcoming environments for residents

11:04 - and visitors, and thereby facilitate social participation. Options, of course, vary between countries and settings. The provision of sufficient staff skills mix and training, including about the human rights of older persons is, is important in ensuring quality care and assisting older people to be socially involved. Staff assistance is important for personalized or group transport or activities with other people at the setting, such as intergenerational activities

11:39 - or volunteer programs where people of all ages can get to know each other, share their life experiences and discover common interests. Some cultural specific age care settings can foster a sense of community quite well, interaction with nature and pets, music, art, culture, reminiscence therapy, and physical activities such as hand massage, reflexology, or aroma therapy are also great ways to, inspire social participation.

12:15 - Assistance with communication is also important with the use. such as with the use of technology and supporting communication may also include other measures, such as teaching of simple sign language to, to both staff and older people. this could include words such as cup of tea, shower, happy or sad or bored. that's just a few, words from, Australian sign language, called Auslan.

12:49 - so this could be very useful in aiding communication where older people suffer from. many, many people, who are old suffer from hearing loss, where understanding is even more difficult, when infection control masks such as with COVID-19, or other illnesses are worn, or where voices are are weak, or accents are difficult to understand. So all levels

13:15 - of government should be involved in making community services and facilities more accessible. And this could inc include, for example, better walking pathways between aged care settings and local parks and shops and accessible transport and the placement of community facilities near aged care settings. There are many challenges though in facilitating social participation, including the frailty of many persons living in age care

13:43 - and conditions like dementia. And there's also the need for specialized staff and environmental design and a range of practical considerations. There's also the need to balance different human rights, such as those involving autonomy and liberty and the need for protective measures. The challenges and dilemmas of applying the disabilities convention, including what deinstitutionalization should look like specifically in aged

14:12 - care and even matters like the extent of incorporation of technology such as robotics. They need further elaboration by human rights mechanisms and consultation with different stakeholders. There are many other articles of the disabilities convention that interact with, with Article 19, for example, article 26, which also relates to social re rehabilitation and relationship building and overcoming stereotypical views of people living with dementia and their capacity

14:44 - to engage in rehabilitative, re rehabilitative therapies and the recognition of older person's legal capacity under Article 12, including people, with dementia relating to support of decision making. Article five, equality and non-discrimination, which obliges states to prohibit discrimination on the basis of disability, where discrimination may take the form of segregation or social barriers or paternalistic, approaches

15:14 - to care which limit autonomy and erode identity. And there's also a need for greater community awareness of issues facing older people, under Article eight, through educational campaigns including dementia awareness. and this can help our family members, particularly, when, when their family member may, acquire dementia and go into a f facility so that visits don't drop off. if they can receive some education, on how to communicate, to make, visits, you know, be better for, for everyone the disabilities Convention

15:51 - and Article 19 in particular offers an important opportunity to protect the right of social participation in aged care. And this need is gaining importance in an aging population. In adopting human rights standards, state should ensure that older persons are provided with meaningful opportunities for social participation by facilitating choice in living arrangements such as smaller homelike settings with sufficient staff and individual assistance to support the pursuance of meaningful connections, as well as greater access

16:27 - to community services and facilities. This will require a range of measures including leisure, legislative policy, and regulatory, measures and adequate monitoring and working towards cultural change with the aged care sector, and also involving older persons and groups, which represent them in related decision making about living arrangements, care and support. And raising community awareness to encourage greater understanding of closer connections

16:58 - and the need for closer connections between older persons and younger generations is also crucial. And of course, more interdisciplinary research and dialogue is needed on the ways to tackle loneliness and social isolation in aged care, and how the disabilities convention can be implemented in this context to best protect the rights of older persons.

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