Anglicare (media release), 13th October 2014
Many ageing parent carers, aged over 60 years caring for a son or daughter with a disability, are looking after their loved one without a transition plan and with little support, according to a new study released today by Anglicare Sydney.
The study that surveyed 159 carers found the importance of a transition plan arrangement was mentioned by four out of five carers. Yet only 10 per cent of carers surveyed had received assistance with transition planning prior to joining Anglicare Sydney’s program.
“Most ageing parent carers in our program are female and about a fifth are in their 80’s or 90’s. They have been providing care for 30 years or longer and one of their key concerns is for their child to be cared for after they are no longer able to do so.
“However, the lack of appropriate, affordable and secure supported accommodation for people with a disability makes transition planning into alternative accommodation difficult for families,” explains Sue King, Director of Advocacy and Partnerships.
“Stress and anxiety are prevalent among ageing parent carers, with two in three carers exceeding the normal range of stress. Yet they have been less likely to seek assistance. Carers entering our program indicate that case management, transition planning, respite and increased social contacts for their children with a disability are vital support services. However, many hadn’t accessed these supports for at least 12 months prior to seeking support from us.
“We also found that although many carers accessed respite, it was still not enough and came at a cost. Over one third of carers entering our program needed respite including emergency respite when they were ill or needed hospitalisation.”
The study also highlighted that:
“Currently there remains no legislated enforceable right for carers to assessment and support and there is no guarantee that carers’ needs will be assessed or catered for under the NDIS,” says Ms King.
- There were significant positive changes in carers’ wellbeing while they were in the program
- Most people with a disability wish to stay in the family home as they age
- Parents and care recipients need to be at the centre of a network of support
- Regular planned respite periods assisted carers to sustain their caring role long-term
“We urge the Federal Government to amend the National Disability Insurance Scheme Act 2013 to include a provision for a separate carer assessment in addition to the participant’s assessment and plan. The Federal and State Governments and the National Disability Insurance Agency should also provide support for carers of people with a disability who are not NDIS participants.
“The National Disability Insurance Agency and the private, public and community housing sectors should also fund the development of co-located housing models suitable to accommodating ageing parent carers and their adult son or daughter with a disability.”
NDIS overlooks needs of carers, says report
Lisa Vinsentin, Sydney Morning Herald, 13th October 2014
... Evelyn Scott, 69, who is the primary carer of her daughter Kylie, 34, said she knows of many parents in her situation who are struggling to find accommodation for their disabled child in Sydney.
"Those of us who are ageing and getting more and more tired and worn out are still looking for the solutions to the difficulties we see as we get older," Ms Scott said.
"We still have our sons and daughters living with us because the supports aren't in place."
Kylie, who has Down syndrome, is able to live independently but can't afford to pay Sydney's high rents, and would be forced to live somewhere far from her existing support networks, and with limited access to public transport, Ms Scott said.
"It's something that I really would like to see Kylie able to establish in her own right while I'm still around to assist.
"I've come up against brick walls everywhere. It's been a very frustrating year."
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