Consumer Engagement in the Aged Care Reform Process

Responses to Q&A sheet

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Responses by city

Sydney
Melbourne

Special Groups: CALD Sydney

What are people living with dementia looking for in aged care reform?

• Appropriate, quick and flexible assessment and services
• No long waiting lists
• Consistent staffing
• Variety of choice – that means services available and no waiting list
• Information available for all services
• Accreditation of the services
• Have someone who cares and understands their personal needs
• More dementia specific services
• Workers trained specifically to work with dementia clients
• A better assessment to identify their needs
• More advocacy by workers for people with dementia and their carers
• Support in a crisis
• No stigma in the community
• For their condition to be understood by families and friends
• Help for people with younger onset dementia
• Not having to change services as needs increase
• Dignity
• The right to stay in their own home
• Continuity
• Have individual needs addressed
• Holistic approach (personal care, domestic assistance, respite)
• More packages
• More hours
• Services that address the loss/grieve associated with having a family member with dementia
• Security, care and safety
• To get help from home if possible
• Able to get information from home and know how to get it
• More help and company
• Love
• Better community care/support and advice on how to deal with challenging behaviours with people with dementia
• Services tailor to individuals with different ethnic backgrounds
• Diagnosis—difficulty in communicating with GPs
• Emotional costs of people with dementia and carers
• Government needs to get serious about aged care as a whole

What concerns you most in access to community and residential care services that meet your needs?

• Staff not trained
• Understaffed, not meeting client’s specific needs – carer continue to be carers even when their loved ones are in the nursing homes
• Currently there is NO CHOICE – you have to take the first place available
• Lack of interpreters
• The role of the carer even after the person is placed in residential care, mostly due to staffing levels
• Languages and cultural barriers
• Need workers who speak my language and understand my culture and beliefs
• Skilled workers
• Quality of care
• Cost
• Lack of funding to address needs
• Accessing needs of Early onset dementia
• Cost, honesty and determinism
• Consistency
• The chance to meet together and share with others about concerns
• Long waiting lists
• Distance
• To provide more respite care for short time
• Ethnical group service by staffs with the same nationality
• Choice of bilingual/bicultural staffs
• High turn-over rate
• Funding for training of staffs Top of page

Do you have particular concerns around access to information and assessment for access to care services?

• Phone numbers do not work – issues must be addressed face to face so that emotional issues can be addressed
• There should be a DVD of all services in the area that the client can take home and view
• Access to information
• Access to more community based services and to decrease wait lists (12 months for EACH packages, 2 years for agencies in western Sydney such as BCS, Southern Cross etc.)
• There needs to be one access point into the system so there is less confusion about where to look for help.
• Language and cultural aspects – mainstream services use interpreters to help but it is not effective, people are reluctant to ask for help because it is too much trouble.
• We are unable to access a lot of services in our community.
• More information for multilingual communities
• A list of services needs to be sent to all GPs and medical centres.
• CALD communities need education about dementia
• Culturally appropriate counselling
• Long waiting lists
• Why have central points? There are no resources to provide services through service providers
• Translators and interpreters
• The system is difficult to navigate
• Diagnosis—bilingual/bicultural
• Always struggling with funding
• Vacancies available?
• Confusion about where the patients can bet the assessment team
• More multicultural carers
• Information that is available in different key languages and needs to be clear and easy to follow
• Staffs who understand the system of age care
• Sustainability
• Too many papers and information is not available in other key languages.
• Outreach to people with dementia and carers who are isolated and/or have troubles with the languages.

What kinds of services do you need most? (E.g. home care, respite care, residential care, services for those with severe behavioural issues)

• In home respite and day centre respite
• Respite care that is individually tailored
• Personal care
• Help with behavioural problems
• Transport
• All of the above when needed
• Support for carers with kids (child care services?)
• Lower worker to client ratio
• Staffs and services need to be person centred rather than just “baby-sitting”
• What types of support and services do you need to assist you in your role as a carer?
• Support - Many are elderly and have difficulty coping
• Counselling and debriefing
• Respite - appropriate allocation, more hours available, good quality.
• Flexibility
• Help to understand the role
• Good quality support from service providers
• Financial help
• Information on where to find help for all types for difficulties
• Education
• Regular training
• Contact with other carers – carer support groups such as memory lane cafés
• Someone who will listen
• One stop shop for information
• Longer hours of services
• CBDC—often not used/not preference for many clients/inappropriate (I don’t understand what it means so I just type it down)

Are there health issues that need to be addressed in the reforms?

• Dementia
• Counselling for carers – if not addressed carers cannot address their emotional issues, this leads to depression and other medical issues
• Mental health issues affecting people with dementia
• Funding for younger onset of Alzheimer’s
• Respite for younger onset dementia
• Carer stress
• Care for carers
• Safe workplace in aged care facilities
• Co-morbidities and management of medication and cost Top of page

Are there any other concerns you have about dementia care or the aged care system?

• The high costs of diagnosing dementia. Could the government subsidise this?
• CALD services for dementia need to be placed in high priority
• If “cashing out” is introduced will training be provided to the paid carers?
• Financial support
• Address Younger Onset Dementia
• Social activities like at the dementia specific Orange Blossom Cottage at the Hills Shire District
  • Orange Blossom Cottage provides social support and friendship to clients through mentally stimulating recreation and social interaction
• More education to CALD community (clients/carers/workers) through ethnic newspaper/TV, ethnic radio etc.
• Lack of communication between hospital staffs and patients and carers. There needs to be more education for hospital staffs in dealing with people with dementia.
• Bigger budget for research to help to prevent early onset dementia.
• Issues around access to the system and the quality of aged care, maybe there should be better training and pay for aged care workers so that quality of care maybe improved
• Stigma with dementia, there are people with dementia refuse to find help because of the stigma associated with dementia
• More social activities
• Financial issues
• More energy and attention should be spent on prevention rather than dealing with issues when it is at the crisis point
• More facilities

Special Groups: CALD Melbourne

What are people living with dementia looking for in aged care reform?

• Compassionate, skilled staff to deliver a suite of services that are both consumer directed and block funded
• People with dementia in the Romanian community are isolated and neglected, this is due to us being a smaller community and not having enough services to provide to our community
• Educational support for Turkish speaking community (awareness and understanding)
• Community service and support for senior citizens (especially ethnic groups)
• Increased activities and support/resources for senior citizens e.g. home care and aged care for Turkish people
• Training programmes
• Care places for all nationalities (one for Sri-Lankan)
• Quality home care
• More written materials (lack of Turkish resources)
• Information sessions about the disease in their first language, instead of interpreters
• Responsive services
• Support for carers
• Research into a cure or means to modify the impact of the disease
• Appropriate services that can be addressed in the community, rather than residential
• Staff who are considerate and caring of their needs
• Better and quicker access to assessment
• Staffs need to be better compensated to keep the sector alive and recruit people into it
• The needs of training and educated workers who speak the language of the patient (Arabic) and not interpreting only
• Culturally specific services

What concerns you most in access to community and residential care services that meet your needs?

• Poorly skilled work force that needs to be paid in accordance to their duties performed
• The Romanian community needs a lot more attention from the Government.
• Need to make the Romanian community more aware about the services available for them
• Well trained Turkish speaking aged care and home services
• Transport services and carer community activity (increased social community activity)
• Promotion of activities in the Turkish community
• Services more culturally relevant, for example food, staff who can communicate in the appropriate language, interpreter services – these are not issues considered at all at the moment
• Care places for older Sri-Lankans, with family around, familiar landscape and surroundings
• Most residential care places are not culturally appropriate
• Turkish people only have one ageing nursing home – Ottoman nursing home. We applied for one in the South Eastside but it has been rejected.
• Different councils have different policies
• Lack of CALD responses to dementia
• Lack of access to support services that anglo-Australians have come to expect
• There is no national strategy on care for the CALD aged
• Interpreter service is not used friendly
• Wait lists for CACPS, EACH and EACHD, there are not enough packages to meet demands
• Huge gap for social support funded through federal government money
• Costs of residential homes are far too expensive
• Not everyone has a carer so they miss out on social services as they are not eligible for NRCP funding
• There are no elderly residential services for Arabic ethnic groups. We need funding and support for Arabic groups to help us maintain this service.
• It is hard to decide what care facility to go to in a short amount of time Top of page

Do you have particular concerns around access to information and assessment for access to care services?

• GPs are critical in the patient’s journey. Additional funds need to be directed to up skilling GPs
• Not enough information available for the Romanian community
• Nursing homes don’t provide Romanian speaking staff
• Staff are stressed due to language barriers
• Promote seminars and training for volunteers
• Training volunteers and service providers in different languages
• Yes, there should be better updated information for people needing aged care services e.g. home care services, information and residential care services and information
• Current systems don’t work well at the moment – there is lots of missed information and communication
• Not using interpreters or interpreter services
• Not enough Turkish interpreters
• Information needs to be in more community languages. There needs to be language dedicated phone numbers such as those used by Centrelink.
• Yes, there is a huge lack of funding from the government to assist in assessment and better care coordination for CALD people from hospitals as a main provider back through the community
• Better coordination between GPs, hospitals and community is needed
• People who don’t have a carer can’t access NRCP services
• Many elderly people don’t have access to information in their Arabic language
• Bring in students in their final year of studies in health areas from specific countries. An agreement is in place with Finland and Holland.

What kinds of services do you need most? (E.g. home care, respite care, residential care, services for those with severe behavioural issues)

• Funds need to be directed to keeping people at home with additional care and support 4-6 hours per day
• Romanians like to grow old in their homes, so home care is most needed
• Asian community prefers in home care
• Home care, appropriate with quality and relevance
• A carer in their first language
• Culturally sensitive services
• Immediate services when people need them
• Consideration for people’s religions
• Greater variations of respite care e.g. homes for Greek people
• All! Home care, respite care with more social activities, and more affordable access to residential care
• More seamless entry between HACC and Federal services
• Better culturally specific residential services
• Residential care services for people who speak Arabic
• What types of support and services do you need to assist you in your role as a carer?
• Funding for staff training
• Counselling services to avoid burnout
• Training programme and seminars for support
• Financial support
• Support from the government to employ quality carers at home (culturally and linguistically relevant)
• Look into what the Turkish community need
• Respite in the home with bilingual trained carers
• A GP to come to the home
• More respite for family carers
• Access to information and support through a helpline
• Services to keep carers healthy
• More flexible services that fit within a carer’s life and work
• More funding should be put into social support and carer holidays
• Carers shouldn’t be punished for working more hours
• Funding for carer respite
• Social support for client and carer
• Support services so we don’t have to care 24/7 Top of page

Are there health issues that need to be addressed in the reforms?

• Mental health issuers of the carers
• Preventing dementia and Alzheimer’s
• Early diagnosis
• Turkish community is one of the fastest ageing populations
• The government needs to look at each ethnic group instead of the population
• Chronic disease – more preventative health measures
• More information on the prevalence and cost of dementia
• Chronic health conditions and people with complex care needs as these people don’t fit easily into services for the aged
• Aged services should work better with other services
• Hospitals need to be better funded for interpreters to be more culturally appropriate

Are there any other concerns you have about dementia care or the aged care system?

• That this consultation doesn’t result in ‘real change’
• Services need to be flexible and sufficient in terms of hours of care
• Remuneration to satisfy good quality dementia carers
• A care place for the Sri-Lankan community
• The aged care system is very complex at the moment, there are many different agencies doing the same thing
• I am concerned about the nursing homes. Most of them are not suitable for dementia patients. I am concerned about dementia residents sharing a bathroom.
• For the government to look more closely into the Arabic community, and provide quality nursing homes, as we are ageing
• Don’t put all dementia clients together, mix them in with low care clients
• The overall planning of CALD care is woeful
• No national strategy on the care of the CALD aged
• No minimum data sets maintained by Alzheimer’s Australia or carer groups
• CALD care unduly reliant on small grants through CPP and dementia grants
• Cashing out or vouchers does not fit for people who are complex, don’t have carers or who have cognitive issues
• There needs to be good links between CALD agencies and mainstream services
• Senior citizen groups should be better supported to provide support to members who are ageing or have dementia rather than kicking them out.
• Police and communities should be more aware of ageing and dementia
• Experienced trained workers for dementia are in high need for all multicultural groups, especially Arabic ethnic group.
• Why not use innovative ideas from overseas by working with companies in other countries? We use Finish technology companies by trialling their equipment. Top of page

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