Nothing about us without us - older citizens and their allies co-producing community care

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Supporting and Managing Cultural Diversity in HACC Services Day One

Nothing about us without us older citizens and their allies co-producing community care

20 October 20161Community Care SymposiumAged and Community Services SA & NTAdelaide 21 October 2016

Nothing about me without me

I would like to acknowledge the traditional owners of the land who we meet on today and pay my respects to Elders, past and present. I would also like to acknowledge my Aboriginal colleagues who are here today.

I would like to thank the Australian Aged Care Quality Agency for the opportunity to present this paper today


Purpose Changing landscape of aged careCo-production as a framework for working with older citizens and their allies Challenges and opportunities Six key steps for service providersImplications for policy and research


Nothing about me without me


Carrie Hayter Consulting

20 October 2016


Nothing about me without me

Empowering people who use social care to be in charge of their funding and supports

I am the Managing Director of Carrie Hayter Consulting that works will all actors in the social care system to put people at the centre of their supports and funding.

We do this through our research, evaluation, education programs, public speaking and writing.



20 October 2016Work with over 300 aged care and disability services across AustraliaPeople with disability, older people and their allies Advocate and service userFather and grandfatherPhD research4

Nothing about me without me

This paper is based on my PhD research as well as the consulting work I have undertaken with over 200 aged care and disability service agencies across Australia. This also includes working with older people and their allies.

It is also based on my reflections as an advocate and service user for my father and grandparents in their journey through the aged care system. 4

20 October 2016Active Ageing Conference Carrie Hayter Consulting5


Shifting Policy Landscape Personalisation

Passive Clients Active Citizens

Block funding

Individualised fundingRigid inflexible, bureaucratic services

Flexible responsive services 20/10/20166

Nothing about me without me

There are significant changes happening in the policy landscape in age care and disability policy in Australia as part of the agenda of personalisation. The assumptions that underpin these shifts include the changing role of people who use public services shifting from being passive clients to active consumers. It is assumed that people who use disability services or aged care services will become active consumers. Rather than being passive clients relying on professionals for support and advice people are assumed to be active engaged consumers who will make informed choices about their care.

Flowing from this assumption is the need for changes in the how agencies are funded from block funded to individually funded. It is assumed that individualised funding will provide more mechanisms for service users to get their needs met. However I am not so sure that the scale of reforms we are seeing in the community are what we are seeing in residential aged care in this country. I think there are pockets of innovation but I still think that we have a long way to go to see people as citizens living in a residential community.

The changing external landscape is such that residential aged care services need to rethink their models and how they view and engage with older people and their allies 6


Nothing about me without me

I think it is important to reflect on the history of the aged care system. The reforms being implemented are probably the most significant since the

One of the other challenges is that the aged care system was largely created in the interests of professionals, government and providers. In the past older people were seen but not heard, ageing was seen as a sickness and people were slotted into services mainly institutionally based services and not given access to any rehabilitation because they were older people. We still see large numbers of people living with dementia in institutions in dementia specific wings and it is assumed that most people living with dementia will eventually be supported in a nursing home. We dont always see the right environments for people living beyond dementia to age well including the creation of dementia friendly communities. Since the mid 1990s were the emergence of the concept of active ageing and the rights of older people we are seeing shifts. These shifts are also driven by the perceived economic costs of ageing framed within a human rights perspective. However, the way in which we support people with dementia has not necessarily been framed from an active ageing perspective?

At the same time we have seen the growth and emergence of community care with policies stating that older people should have choice and control over their support. 7

Wellness and reablement with older people Improved health and wellbeing for older people (Lewin at al, 2013, Parsons et al, 2013)Reduces peoples dependence on paid supports (King & Parsons, et al 2012, Lewin & Alfonso 2013, Lewin & De San Miguel, 2013) Benefits of physical exercise for people with dementia (Alzheimers Australia NSW 2014, Henwood and Neville, 2014)Engaging carers and service users in their reablement and wellness (Wilde & Glendenning, 2012)8

Nothing about me without me

There is an emerging evidence base for wellness and re-ablement for older people in that it can improve the health and wellbeing of older people, it can reduce the dependence of people on paid supports.

Research identifies the benefits of physical exercise for people living with dementia. We know it can increase the mood and wellbeing of people living with dementia



Nothing about me without me

People living with dementia, particularly people living with younger onset dementia are advocating for the way that we think about people living with dementia moving away from a prescribed disengagement to a social model of support.Kate Swaffers book what the hell happened to my brain? Living beyond dementia is essential reading for all people who work with people with dementia. Kate Swaffer talks about the model of prescribed disengagement as part of the medicalisation of dementia. She talks about her experience of being diagnoised with early onset dementia at 49 and told to give up work, get your affairs in order and prepare for a nursing home. In her book she talks about living with dementia has been one of the biggest fights of her life. Christine Bryden has also written extensively about living with dementia and in this books reflects on the self advocacy movement for people living with dementia. 9

10Social Model of Support Swaffer 2016 Diagnosis/ confirmation of diagnosis

Assessments (eg Driving, medication occupational therapy )

RehabilitationStrategies to manage and support disabilities (eg technology, buddy/mentor)Advanced Care Directives

Continued meaningful engaging activitiesSource: Swaffer, K., (2016:165) What the hell happened to my brain? Jessica Kingsley Publishers, London and Phiiladelphia Support for a terminal progressive chronic disease

Aged Care

Swaffer talks about the need to move away from a prescribed model of disengagement for people living with dementia to a social model for people living with dementia and their care partners.


Personhood Consumer or Customer asPurchaser Citizen Social and political rightsEconomic purchasing power Relationship between client and professional Client Citizen Consumer AgencyMechanisms for enacting choice and voiceMarket mechanisms via competition (LeGrand, 2007)Managing self interest(LeGrand, 2007) and voice mechanismsEnable choice through voice mechanisms (Simmons et al 2011)Hybrid Choice and voice mechanisms

The language about how we see people is changing as part of the personalisation and transformation of social care for older people and people with disabilities in Australia.

The language used by the Australian government is referring to people who use aged care services as consumers and the creation of a market of care. Within this is the use of the word, choice, voice and control and various policy mechanisms instituted by government to introduce choice and control for older people.

However, I wonder whether the positioning of people as consumers of residential services is the right terminology.


20 October 2016 Carrie Hayter Consulting12

Who is the consumer it takes a community, a lifetime of friends and relationships to age well. These are pictures of my father who died last year from an very aggressive form of Parkisons disease Multiple System Atrophy. His life was filled with love, family and friendships a 49 year partnership with my mother, he had three children a wonderful grand-daughter and had so many wonderful friendships.

When we talk about the consumer directed care or person centred perhaps we are using the wrong language. Is it about community centred supports with the person directing in partnership with their family, friends and the people they love.12

20 October 201613Coercing Educatin