The theme of this Issue of Frontline is Ageing and Intellectual Disability.
The international age profile is changing, leading to a projected doubling of the world’s population in the over-60s age cohort over the next 35 years (WHO, 2015). It is also estimated that the next two decades will see a greater proportional increase in the intellectual disability population over the age of fifty-five. While this increased longevity is welcome – the changing profile also brings with it many challenges for health and social care provision.
Article 19 of the Convention on the Rights of People with Disabilities recognises the right of people with a disability to choose where and with whom to live. This is further endorsed by HIQA’s National Standards for Residential Services (HIQA, 2013) and the report on Congregate Settings (HSE, 2011), with its policy shift from a congregated model of support (defined as 10 or more people living in a residential setting) and institutionalised service supports, to community-based supports.
Over one quarter of people with a moderate, severe or profound intellectual disability in Ireland live in home settings. As people with an intellectual disability live longer, they are however now more likely to outlive their caregivers. In 2011, there were 4,000 people resident in institutional settings (HSE, 2011), with this figure reduced to 2,725 in 2015 (HSE, 2015). The Transforming Lives Programme subsequent to the Congregate Settings Report (HSE, 2011) endeavours to support people with an intellectual disability to live a life they choose in ordinary places. Notwithstanding this, it is also estimated that there are 162 people with an intellectual disability residing in Nursing Homes (NIDD, 2015), a figure which may not reflect the actual number of older people with an intellectual disability in Ireland in such care environments.
Ireland is faced with the challenge of supporting older people with an intellectual disability in their advancing years, and needs to address this challenge in a meaningful way. National policy espouses community-based service supports, where older persons are supported to remain within their own home as they age. However, failure to achieve this is evident in numbers of older people remaining in hospital-type settings, reported lack of appropriate home care packages and the continued use of Nursing Homes (congregate setting) as a model of supporting older persons.
We need to consider current service provision, that is expected to uphold policy and encourage movement from congregate settings, yet funds congregation when a person ages and their needs begin to challenge. Such an approach only justifies this care option in the absence of any real alternative. Policy initiatives must imagine creative and supportive alternatives for older intellectually disabled people, or at least clearly articulate the decision-making framework for choosing support options.