Nothing About Us Without Us: Healthy Ageing With a Disability

As part of the consultation on a new strategy for an ageing population, we've invited a range of experts and specialists to write on topics of their choice.  In the following article Henrietta Trip considers disability in an ageing population.

“The moral test of government [society] is how [it] treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life…” (Hubert Humphrey, 1977).

How technological trends affect people with disabilities

Over the last two decades there has been a rise of technology resulting in both benefits and costs for people with disabilities. Technology has improved accountability, ease of access to services, and offers new and faster ways to communicate. On the downside, electronic communication options can be more impersonal, and services more fragmented due to the increased demands on peoples’ time and access to other resources. This can impact on the time available to provide individual services, as well as the quality of, and engagement in, person-centred care.

What are the implications of ageing for people currently living with a disability?

  • In 2013, nearly a quarter (24%) of New Zealanders identified as having a long-term physical, sensory, cognitive, learning or functional impairment (since birth, acquired from illness or accident or developed as the person got older). This group (1.1 million people) included 28% from Middle Eastern, Latin American and African origin, as well as 26% Māori, 19% Pasifika, 14% European and 13% Asian.
  • The median age of people living with some kind of disability is 57 for Europeans and 45 or less for all other groups. The average life expectancy for a person with a learning (or intellectual) disability in New Zealand is approximately 59 years of age.
  • The number of people living with a disability will increase over the next 50 years as they are living longer and may experience the same range of health challenges as the general population. However, these health challenges are likely to occur at an earlier age and in greater number and complexity for people with disabilities (Ministry of Health, 2011; Wahrendorf et al., 2013).
  • Sometimes the changes experienced as a person gets older are attributed to their existing disability or impairment rather than as a natural part of the health and/or ageing process. Krahn, et al. (2006) called this ‘diagnostic overshadowing’.
  • The majority of people with a disability have lived with impairment(s) for a long time and are supported by volunteers, friends and family/whānau carers – who may be experiencing their own challenges related to ageing.

Achieving equity for older people with a disability

The Social Model of Disability reflects that people are not disabled when they live in a society that is organised to provide accessible information (language and media), health, disability, social services and environments which enable a person to be independent and exercise autonomy in decision-making about their own lives. This means ensuring all citizens experience both equality and equity, including protection from abuse and injustice.

Equity includes (but is not limited to) access to: education, voting, transportation, communication, training and employment (pay and conditions), health, housing and standards of living within and across disability populations.

To achieve, develop and sustain equity as an outcome for older people with a disability, all sectors (including health, disability, education, justice, civil and national policy makers) must also receive core education and training to promote the rights and engagement of people with impairments in all areas of their life.

People have impairments which may include physical, cognitive, learning, mental and/or sensory limitations. As a society we all have a responsibility to ensure individuals, their family/whānau, and those of significance to them, have access to support which facilitates biological, psychological and social well-being in a community of their choosing, as well as acknowledging an individual’s spiritual, cultural and personal identity.

The United Nations Convention of the Rights of People with Disabilities (2006) requires signatory countries (Aotearoa New Zealand signed up in 2008) to provide evidence of their commitment to meeting the Convention’s standards.

Ensuring respect and dignity for people with disabilities requires recognising, promoting, upholding and embedding their rights as citizens. This is a cornerstone of the Convention and it involves asking individuals, and the communities with whom they identify, what is important for them in thinking about and planning for their older years.

Planning for positive & healthy ageing: What has been learned from people with disabilities?

Future directions are undertaken in partnership with those ageing with, and/or into impairment. These include but are not limited to the following:

  • Leadership is developed and sought from within the disability community.
  • Accessibility and mobility within and between communities and cities.
  • Development of inclusive approaches to improve socialisation and reduce loneliness.
  • Continued learning, education and training — Universities of the ‘Third Age’.
  • Maintaining employment and/or planning for retirement — ensuring economic security.
  • Leisure, sport and recreation opportunities, and outlets which are equipped to enable access and adapt to the needs of people with impairments as they age.
  • Flexibility within and between health, disability and social services funding.
  • Healthcare screening and access which reduces diagnostic overshadowing, improves health outcomes and ensures people with impairments receive integrated services that are ‘Better, Sooner, More Convenient’ (Ministry of Health, 2011).
  • When people with a disability access integrated services, they are supported by trained health, disability and other relevant sector or industry professionals.
  • Access to specialist primary, secondary and tertiary older persons’ health, disability and respite services — where these skills do not exist within mainstream services. This may include people with specific learning or intellectual disability, addictions, mental health, dual disability, neurodevelopmental and/or rehabilitation challenges.
  • Technology improves what the person considers quality of life for themselves.
  • Caring for the network of support, as the majority of people with impairments receive support from unpaid sources including volunteers, friends and family/ whānau carers.
  • Streamlined services reduce duplication and improve access to support for each member in a person’s network of care.
  • Provision of accessible information about the services and funding available for people with a disability, and for those who support them. This will enable access in a planned and timely manner.

“Nothing About Us Without Us”

Planning into the future for people to age well starts NOW.

Consultation and leadership must include people with impairments — across the lifespan.

Henrietta Trip, RN, PhD, Lecturer, Centre for Postgraduate Nursing Studies, University of Otago, Christchurch