Briefing: Findings of Survey of Older People with Disabilities

Background

In September 2024, COTA Victoria and Seniors Rights Victoria launched an online survey on disability supports for older Victorians. This occurred in parallel with the release of a discussion paper developed with partner peak bodies in the ageing and disability sectors. The survey and discussion paper are part of an ongoing policy advocacy process to address gaps and inequities in the provision of disability support to older people.

The survey aimed to gather insights into the experiences of older Victorians in accessing disability support services and their ideas about improving disability support and inclusion. The survey was promoted actively to COTA Victoria members, and cross-promoted by partner agencies to their membership bases.

Respondents

A total of 33 responses were received. While a relatively small sample, the responses offer valuable insights that corroborate other sources of evidence and point to issues for further investigation. We are grateful to all those who took the time to respond and share their personal experiences.

Across the sample, 42% were aged 50-64 and 58% aged 65-74. This provides a good split between those potentially eligible for the National Disability Insurance Scheme (NDIS) and those not eligible to join the scheme on the basis of age.

Respondents reported having a diverse array of disabilities – the largest number having physical disabilities and mobility restrictions and psychosocial disabilities, with several people in each of the following disability categories: sensory and speech, intellectual, acquired brain injury, and other disability.

Service access experience

Across all respondents, 36% had not sought the help of a disability support service, 40% had sought and accessed a service, and 24% had sought but not accessed support. This means that, for this sample, around a third of those who sought help did not receive it.

The reasons cited for not receiving the support sought included: cost, not meeting eligibility requirements, unavailability of a suitable service, and waiting time being too long.

Respondents were asked to identify the funding program under which they accessed support. Support was predominantly provided under the NDIS (67%). Other programs mentioned were Commonwealth Aged Care Home Support, the Disability Support for Older Australians (DSOA) program, the Victorian Home and Community Care Program for Younger People, and funded disability advocacy.

Respondents’ overall rating of their experience in seeking a disability support service ranged from a low of one star out of five to a high of four stars.

Positive aspects of this experience mentioned included: being listened to, having one-on-one physiotherapy, and having access to NDIS funding (albeit with some not finding it easy to access actual services once on the scheme).

Negative aspects included: support being too costly, process being too complicated and bureaucratic, waiting periods too long, finding it hard to navigate systems, and not feeling listened to and respected.

Perceived gaps in the system

Common themes raised by respondents in relation to gaps in the current system were:

A significant discrepancy between the level of disability support funded in Aged Care compared to the NDIS.
A lack of basic information and navigational support to identify and access relevant services.
That many older people who do access the NDIS find the scheme confusing and overly bureaucratic.
A disconnect between disability services and the healthcare system, with some people pointing to the lack of referral structures between the two systems and the need for a GP type role to facilitate specialist support.
A perceived inadequacy of disability expertise and understanding in the Aged Care system especially around allied health and reablement focus.
Too much reliance on digital communications alone to facilitate access to support services.
That Regional areas lack many services required by people with a disability, even regarding basic home help, leading to very long waiting times.
A sense that people in the Disability Supports for Older Australians (DSOA) program are being pushed towards Aged Care and that people nearing 65 being delayed from NDIS assessment.
Some specific gaps relating to people with intellectual disability who were over 65 before NDIS started, and those with degenerative conditions that were present but less severe in earlier age.

Feedback on quality of support

Respondents also provided a range of views about the quality of the support they received through various funded disability programs:

A small number of respondents reported positive experiences particularly with the provision of physiotherapy and home support, yet this was sometimes provided for too short a period.
Some older people with a disability feel they are not well engaged in planning of supports and simply being told what they need, although a small number of others said they were pleased at being heard and responded to.
Some highlighted a need for cultural change to better respect older people in need, with those respondents saying they felt demeaned and invisible.
A sense that some people with disability do not fit well into typical Aged Care programs even if they are over 65.
Conversely, some respondents think that general disability supports need to be more tailored to older people’s needs and preferences.
A concern that changes to the DSOA program are pushing more older people into residential care against their preferences.

Priorities for disability inclusion

Respondents offered a range of ideas on ways to better support older people with a disability in the local community:

A call for Local government to improve footpaths, parks, and opportunities for social interaction for this target group. One respondent pointed to the need for councils to revisit Age Friendly Environments guidelines.
Improved community and public transport are needed in many areas, together with help to keep older people with disabilities driving longer as they age.
Wider and quicker access to aids and equipment is needed, including things like special chairs and minor home modifications.
The need for housing that is both affordable and accessible for older people with a disability is a growing concern.
More ongoing and tailored support is required to help older people with specific types of disability to access and utilise digital communication technologies.
Tackling the twin issues of ageism and ableism in community attitudes and organisational policies is highlighted by some as a central underlying challenge.

Quotes from survey respondents

“Aged Care is treated differently to Disability Services. If you have had a stroke at 55 or at 85 the outcome is the same. You are potentially left with a significant disability. The same supports should be available to both age groups.”
“It is incredibly frustrating and demeaning to access disability services in my area”.
“Everything is fobbed-off onto Aged Care. Most disabled people live in poverty due to a lifetime of no or underemployment and increased medical costs… there are not easily identifiable supports for disabled older people and, those that are found, are not affordable.”
“Complicated, bureaucratic systems that place the onus on individuals to find out that the possibility of support exists and then they generally have to navigate it without help from those who understand the system.”
“The NDIS is complicated to understand and work through. There is a lack of helpful advocates, and everything requires technology access – this is hard.”
“Being elderly and having a disability makes you a somewhat invisible person. If the government put clients first instead of funding… peoples’ conditions would deteriorate less rapidly and they would be able to remain functioning members of society.”
“I was heard and listened to which is important.”
“Disability support is not connected enough to healthcare… [it] should be more like healthcare with primary providers a la GPs, and secondary specialists. At the moment… individuals initially do not have much knowledge of what’s available or any source of independent advice.”

How can you stay engaged on these issues?

COTA Victoria hopes this snapshot adds a valuable sense of lived experience to the broader analysis of these issues presented elsewhere. Hearing directly from older people and their carers is vital to better understanding of the problems with the current system and framing of effective solutions.

To this end, we would like to hear from more older Victorians about these issues. If you or someone who know has a relevant concern or views you would like to share, please contact us by email to askcota@cotavic.org.au or by phone to the COTA WISE Helpline (1300 135 090).

We are also keen to engage further with policy, research and service organisations interested in these issues. Please do not hesitate to contact our policy and advocacy team at policy_advocacy_team@cotavic.org.au.