With technical and medical advancements, more disabled people are living into old age. The system is not prepared, writes Robyn Hunt.

I find myself, with some surprise, riding the dreaded “silver tsunami”, which is bringing lifelong and long-term disabled people with it.  

We are the generation of disabled people who mostly escaped institutions. Some of us are better educated than previous generations and benefiting from technical, medical and other advancements. Some had partners, children, jobs and even careers, albeit sometimes patchy. We are living longer than previous disabled generations. As activists, we worked for change then and still do now.

Yet support systems for elders are unprepared for us. Predictions were possible since we have had disability data since 1996, and ageing population growth has been well signposted. But little data is available about our disability and age status cohort. Lack of data means poor policy and service decisions.

Many disabled older people are not taking kindly to this. For us, the disability came first, then the ageing. That makes a difference.

We do not always fit with either younger disabled people or the age-related impairment group. We are accustomed to living with impairment and disability, but face very particular issues as we age.

Disabled older people know about living with impairment and limitation. We have learned to adapt and problem solve. Someone like me, who has been vision impaired or blind, a wheelchair user, and/or hearing impaired for all or most of our lives, will have different attitudes, skills and ways of managing and adapting to that impairment than a person who is losing their sight, mobility or hearing as they reach older age. 

Once disabled people reach 65 we become invisible, losing our voice and becoming subsumed with those who acquire impairments with ageing. We are disabled by a system taking no account of the difference. 

We lack voice and representation in areas that are critical to our wellbeing, such as on the advisory committee of Whaikaha (the Ministry of Disabled People). Older people should not be excluded as younger people’s voices are (rightly) supported and encouraged. We bring a wealth of knowledge, especially institutional knowledge that has more than historical value.

Medical and caring professions see us all as a collection of medical and health conditions to be managed, a functional and medicalised view of all impaired older people. As activists, we speak for ourselves. We are not prepared to lose our hard-won identity, autonomy and agency, and go gently into that good night. 

There are also some fundamental systemic service problems. These began in 2001 when cabinet changed Disability Support Services (DSS). Separation of DSS for older people recognised that disability in older people is generally related to worsening health, and that older people’s support needs are closely entwined with health needs. Before the change, there was a seamless service for many disabled people as they aged. After the change, services – including those for long-term disabled people – were overseen by aged care, which meant a more medicalised, less holistic approach disabled people were not used to. When the change was made, the impact on disabled older people was acknowledged, but not acted upon. Since then, DSS has continued to focus on the needs of disabled people under 65.

The group most disadvantaged by this 2001 decision was disabled people who age. For some disabled people, their impairment might mean that they age more quickly, and the original impairment may be exacerbated with age. For example, manual wheelchair users’ shoulders wear out, collagen diminishes as people with Ehlers-Danlos age, and scoliosis reduces lung capacity. We can also acquire additional impairments with compounding results. If I develop a physical impairment with age I lose my independence, because low vision means I don’t drive. I would not feel confident using a wheelchair. DSS needs to consider that people in this group need more or different support.

Our situation is complicated by a lack of clarity around who is eligible for DSS. All agencies should work together to sort out the widening definition of disability, and the need to integrate a fractured system that doesn’t work for disabled people in all age groups. At present, many disabled older people feel neglected by DSS, despite promises of a more effective interface. 

Advances in medical technology and better support and services mean disabled people are living much longer. But the approach to policy, services and support has not kept up. Disabled older people face many environmental and social barriers that affect our involvement in our communities and contribute to a sense of isolation. For example, physically disabled people who may have once been able to use public transport, but can no longer do so, are hampered by the chronic nationwide lack of accessible taxis. 

The promoted health stereotype of the “fit and able” older person is undermining. Some disabled people may need supported living at a younger age than non-disabled older people. If they need equipment they may need a premium room, which is more expensive for someone who may not be able to earn and save. Those needing support without means might go without. Living in facilities more geared to very old people can limit opportunities for social and community connection and stimulation.

Increasing disability and living costs mean hardship for those who have had a broken work history related to disability. Poverty and access to appropriate, stable accessible housing close to public transport and services is a real problem. This affects older women particularly, who may not have had partners or owned their own homes. People with learning disabilities who in the past might have been institutionalised face similar problems.

Disabled older people also lack information access. Past unequal access to increasingly expensive technology and internet connections continues for many disabled people, yet government, banking, bill payment and other important transactions are increasingly expected to be conducted online.  There are gaps in the information available for disabled older people, or it is unclear or unhelpful. Many public sector websites are still not accessible. 

Meaningful public discussion on disability and ageing is rare, largely the province of medicos and academics.  Leadership by disabled older people is essential.