Aged Care Legislated Review Anonymous 30

Aged Care Legislated Review – Anonymous 30

Table of Contents

Page | 1 1. Tell us about you

1.1 What is your full name? -

1.2 What stakeholder category do you most identify with? Carer or representative

1.3 Are you providing a submission as an individual or on behalf of an organisation? Organisation

1.4 Do you identify with any special needs groups? Nil

1.5 What is your organisation’s name? As a former carer, I voluntarily facilitate Corrimal dementia carers support group in the Illawarra NSW area

1.6 Which category does your organisation most identify with? Consumer advocate

1.7 Do we have your permission to publish parts of your response that are not personally identifiable? Yes, publish all parts of my response except my name and email address

Page | 2 2. Response to Criteria in the Legislation

2.1 Whether unmet demand for residential and home care places has been reduced Refers to Section 4(2)(a) in the Act In this context, unmet demand means: • a person who needs aged care services is unable to access the service they are eligible for e.g. a person with an Aged Care Assessment Team / Service (ACAT or ACAS ) approval for residential care is unable to find an available place; or • a person who needs home care services is able to access care, but not the level of care they need e.g. the person is eligible for a level 4 package but can only access a level 2 package. Response provided: It is difficult to access long term residential placement even when you are being discharged from hospital. Short term respite in an aged care facility has to be organised well in advance. Example – a carer was recently overjoyed to find she was able to get respite although she had had her name down with a facility for a year. Emergency respite is usually out of the area. Cottage respite i.e. 3 to 4 day respite organised through service provider, is no longer available in the Illawarra now that the tender has gone to Carers ACT. It has always been considered as an integral part of the caring journey as shown in the Rethink Respite program established by the University of Wollongong. I understand that if the consumer is on a package and managed to get collage respite somewhere it is on a ‘full cost recovery’ basis and becomes too expensive to consider. Carers find it difficult to get help at home if they have to go to hospital for an operation, particularly if they have been self-sufficient till then and will only need assistance for up to six months for cleaning etc. It took over a month for one carer to get an ACAT to go from a level 2 to level 3/4 package.

2.2 Whether the number and mix of places for residential care and home care should continue to be controlled Refers to Section 4(2)(b) in the Act In this context: • the number and mix of packages and places refers to the number and location of residential aged care places and the number and level of home care packages allocated by Government; and • controlled means the process by which the government sets the number of residential care places or home care packages available. Response provided: If the government wants people living with dementia to use CDC packages and remain at home, then the mixture of residential and home care places should be controlled. It is essential that residential facilities must have a percentage of places available for respite and for people of all income levels if they wish to be eligible for funding. Some facilities do not have respite beds because they say they cannot afford it. Care of the 24/7 carer must be considered otherwise the government will be caring for 2 people in a facility.

Page | 3 2.3 Whether further steps could be taken to change key aged care services from a supply driven model to a consumer demand driven model Refers to Section 4(2)(c) in the Act In this context: • a supply driven model refers to the current system where the government controls the number, funding level and location of residential aged care places and the number and level of home care packages; • a consumer demand driven model refers to a model where once a consumer is assessed as needing care, they will receive appropriate funding, and can choose services from a provider of their choice and also choose how, where and what services will be delivered. Response provided: A consumer demand driven model is probably effective in city areas but in regional and rural areas may not be financially sustainable. In city and metropolitan areas there is a wide variety of for-profit and not-for-profit providers from which a consumer can chose – this is not the case in other areas. It may be necessary for the government to increase subsidies in outer regions to persuade providers to establish in such locations. In the case of a consumer being allocated the funding it should not be taken frog ranted that the consumer/carer can make all the necessary decisions without assistance. If the service provider is involved in decision making it should be mandatory that any decisions reflect the choice of the consumer and not the business strategy or bottom-line of the provider. The provision of direct funding will most likely benefit members of higher socio-economic groups more than others. It will be essential to provide assistance to those who do not think they are capable of decision making to ensure their needs are met. The most important project should be the education of the 24/7 in home carers – at this stage most seminars and conferences reach allied health professionals and paid carers employed by providers but stops short at that point. I say this from personal experience as I attend events in order to gain information to pass on to the group – carers cannot attend because of lack of even 1 day respite. In fact there are many carers in my area who are unable to attend a support group. In the case of dementia carers it would be a help if the younger onset key worker program could be extended to all people living with dementia. I think it is a great pity that COTA are no longer able to organise talks on My Aged Care which have been helpful to many people. As a volunteer peer educator for the organisation I know the reaction the talks have produced.

2.4 The effectiveness of means testing arrangements for aged care services, including an assessment of the alignment of charges across residential care and home care services Refers to Section 4(2)(d) in the Act In this context: • means testing arrangements means the assessment process where: o the capacity of a person to contribute to their care or accommodation is assessed (their assessable income and assets are determined); and o the contribution that they should make to their care or accommodation is decided (their means or income tested care fee, and any accommodation payment or contribution is determined). Response provided: The cost of care is constantly on the minds of the carers but this is more worrying for people on low incomes – particularly in the early stages before they really need a level 1 package but still require some help at home. When the time comes for placement carers in that category realise that there are a number of facilities in the area that they cannot consider because of the cost. However the cost of care does not necessarily mean higher quality care. If facilities advertise their fees (not all do) they should explain the breakdown.

Page | 4 2.5 The effectiveness of arrangements for regulating prices for aged care accommodation Refers to Section 4(2)(e) in the Act In this context: • regulating prices for aged care accommodation means the legislation that controls how a residential aged care provider advertises their accommodation prices. Response provided: Nil

2.6 The effectiveness of arrangements for protecting equity of access to aged care services for different population groups Refers to Section 4(2)(f) in the Act In this context equity of access means that regardless of cultural or linguistic background, sexuality, life circumstance or location, consumers can access the care and support they need. In this context different population groups could include: • people from Aboriginal and/or Torres Strait Islander communities; • people from culturally and linguistically diverse (CALD) backgrounds; • people who live in rural or remote areas; • people who are financially or socially disadvantaged; • people who are veterans of the Australian Defence Force or an allied defence force including the spouse, widow or widower of a veteran; • people who are homeless, or at risk of becoming homeless; • people who are care leavers (which includes Forgotten Australians, Former Child Migrants and Stolen Generations); • parents separated from their children by forced adoption or removal; and/or • people from lesbian, gay, bisexual, trans/transgender and intersex (LGBTI) communities. Response provided: Equity of access can vary depending on location and depends on the variation of facilities. There are those that accept only high income residents and those open to all. As there are no public residential nursing homes (at least in NSW) financial situations have to be considered. An equity of access may vary.

2.7 The effectiveness of workforce strategies in aged care services, including strategies for the education, recruitment, retention and funding of aged care workers Refers to Section 4(2)(g) in the Act In this context aged care workers could include: • paid direct-care workers including nurses personal care or community care workers, and allied health professionals such as physiotherapists and occupational therapists; and • paid non-direct care workers including: managers who work in administration or ancillary workers who provide catering, cleaning, laundry, maintenance and gardening. Response provided:

Page | 5 Continuity is an important factor in the strategies used by providers. Wherever possible the same carer should visit a consumer as often as required as in the case of a person living with dementia. Routine is important – variation can lead to problems if the worker is not familiar and may lead to resistance. Only people trained in dementia care should be allocated to a dementia person. Aged care workers will only stay with a provider if their pay and conditions are at least on an award basis.

2.8 The effectiveness of arrangements for protecting refundable deposits and accommodation bonds Refers to Section 4(2)(h) in the Act In this context: • arrangements for protecting refundable deposits and accommodation bonds means the operation of the Aged Care Accommodation Bond Guarantee Scheme. Response provided: The only comments I have heard on this is the length of time it sometimes takes (in one case nearly a year) for the nursing home to make a payment after the death of a resident. Do they have to wait for probate?

2.9 The effectiveness of arrangements for facilitating access to aged care services Refers to Section 4(2)(i) in the Act In this context access to aged care services means: • how aged care information is accessed; and • how consumers access aged care services through the aged care assessment process. Response provided: There is a problem with the availability of information on My Aged Care. People who are on the internet, registered with a service provider, or have been able to attend a COTA session know how to access the information. They can then register, ask for an ACAT or a RAS. However NOT all people over the age of 65 are on the net and some only use emails or Skype. Everyone over the age of 65 should receive a copy of the My Aged Care booklet, either by post or through their GP. I recently accessed My Aged Care for a RAS as I need community transport (I am 87 and have just stopped driving). I found the number of questions and the fact that I virtually had three interviews (initial MAC phone, followed by phone with RAS and then a home visit by RAS) a little overdone as I just needed one thing.

Page | 6 3. Other comments

Response provided: From my experience the best way the government could assist carers and people living with dementia would be to provide information, education, counselling and resources in a one-stop setting accessible to all people at the point of diagnosis. Such centres do exist in some regions that I am aware of (Port Macquarie, Newcastle) but like Cottage respite it is non-existent in the Illawarra despite the prevalence of dementia. A key worker for younger- onset has an office but because of the large area she covers is not in the office often. A counsellor form Alzheimer’s uses the office by appointment. Legislation should be enacted so that any funds organisations receive should be distributed equally. With regards to CDCs they must be monitored to ensure that those receiving funds use the money in the best possible way.

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