Changing role for Ireland’s intellectual disability nurses

New report highlights importance of leadership in implementing change and improving outcomes

With people living longer, there is a leadership role for intellectual disability nurses in implementing change as well as improving outcomes, a new report states

Picture: Charles Milligan

‘Supporting people with an intellectual disability to live ordinary lives in ordinary places,’ is the strapline of a new report on the future of intellectual disability nursing in Ireland.

66.2 years

Estimated life expectancy in 1993 for people with intellectual disability, increasing from an average 18.5 years in 1930

(Source: RNID report)

The report, Shaping the Future of Intellectual Disability Nursing in Ireland, describes registered nurses in intellectual disability (RNIDs) as a profession providing health and social care for people with intellectual disabilities (ID).

The 150-page Health Services Executive report has 32 recommendations and aims ‘to determine the future role of RNIDs, who provide health and social care services to individuals with an intellectual disability and their families/carers in a changing landscape’.

The values of person-centred planning

Mary McCarron, dean of the faculty of health sciences and chair of ageing and intellectual disability at Trinity College Dublin,  is the lead author.

Professor McCarron says it will ‘lead our thinking on the role of the RNID for years to come’.

The report has four themes:

  • Person centredness and person-centred planning.
  • Supporting individuals with an ID with their health, well-being and social care.
  • Developing nursing capacity, capability and professional leadership.
  • Improving the experience and outcomes for people with an ID.

Mary McCarron: 'RNIDs positioned
to provide leadership at all levels'

The report argues that changing demographics, renewed movement into community settings and emerging health needs among people with ID – including dementia, osteoporosis, autism and epilepsy – will influence their care, with implications for the future role of RNIDs. This will see a change from direct provision of care as RNIDs’ predominant activity to managing and coordinating health, well-being and social care of people with ID.

Professor McCarron says the report ‘places the values of person-centred planning front and centre, with RNIDs positioned to provide leadership at all levels. Also, it will help implement integrated care by placing RNIDs in community hospitals, health practices and in ID-specific services.’


Prevalence range of epilepsy in people with intellectual disabilities, exceeding a prevalence of 0.4% to 1% reported for the general population

(Source: RNID report)

She adds the report – and its recommendations when implemented – will create the specialisations and training for RNIDs to lead on assessment, interventions and interdisciplinary care in support of health and quality of life across the lifespan.

Key to the successful delivery by RNIDs of person-centred care are:

  • New forms of care in the community.
  • High-quality healthcare provision to address complex health needs and long-term and progressive conditions as people age.
  • A holistic commitment to realising the fullest community lives possible for people with ID. 

Intellectual disability in Ireland

Intellectual disability (ID) is defined as ‘a disability characterised by significant limitations in intellectual functioning and in adaptive behaviour, which covers many everyday social and practical skills. The disability originates before the age of 18.’ ID is the preferred term in Ireland, but is referred to as learning disability in the UK.

As of December 2016, there were 28,275 people registered on Ireland’s National Intellectual Disability Database (NIDD). This represents a prevalence of 6.16 per 1,000 population. For comparison, international prevalence rates are usually estimated at 2% of the population.

There is growing concern that Ireland’s increasing ethnic diversity may translate into variable rates of ID among different ethnic groups.

Of those registered on the NIDD in December 2016, there were more males (58.8%) than females (41.2%), and 68.7% (19,416) living at home with parents, siblings or relatives. The prevalence of mild ID was 2 per 1,000, and the prevalence rate for moderate, severe or profound ID was 3.59 per 1,000.

The number of children and young people with ID is growing, with almost 36% of those registered on the NIDD younger than 20 years.


So, given the pivotal role of RNIDs in the lives of people with ID, what challenges can RNIDs expect and does this report address them? 

Paul Horan: ‘There will be many
challenges in the context of care
 and service provision models'

Paul Horan, assistant professor in intellectual disability nursing at Trinity College Dublin’s School of Nursing and Midwifery, and member of the report’s project team and expert group, says: ‘There will be many challenges in the context of care and service provision models as demographic trends continue to change.

'The report advocates the need for RNIDs to embrace an expansion of their professional skills and nursing roles as part of career-long continuing professional development activities.’

Professor Horan highlights the report’s requirement for RNIDs to position themselves better in a variety of areas of health and social care delivery and provision.

‘These areas include primary care, hospital systems, community integrated service delivery systems, plus school and childcare services,’ he adds.

Plans for the future

In 2023 there will be an evaluation of the recommendations’ implementation, and the findings of the ongoing Intellectual Disability Supplement to the Irish Longitudinal Study of Ageing (IDS-TILDA), led by Professor McCarron, will be relevant.


The year intellectual disability nurse education began in Ireland

(Source: RNID report)

‘Ideas and innovations are only good when they are implemented, and when that implementation is monitored and supported. The IDS-TILDA will be the data source that monitors how well we are supporting the lives of people with ID in Ireland,’ observes Professor McCarron.

Ireland benefits from a committed group of service providers, families and advocacy organisations that insist on more and better services; funding bodies and policymakers who wish to respond; and the long history of RNID dedication to supporting people with ID, adds Professor McCarron.

Finally, she highlights ‘the willingness of people with ID to disprove the myths that they do not want, or they are not able, to participate in research.’

Changing demographics and the role of intellectual disability nurses

The report identifies a changing demographic landscape which will inevitably influence the nature of the work undertaken by registered nurses in intellectual disability (RNIDs), these include:

  • Increased survival of children with complex health needs requiring increased support for families and schools
  • Adult years spent in the community accessing work, leisure and community resources
  • A growing ageing population

Although planning is underway, some services are unprepared. For example, there is little readiness by hospitals, primary care and hospice/palliative care to prevent, support and manage long-term enduring health conditions. Addressing these demographic trends needs an adaptable service provision and additional RNID training/preparation. For example, RNID skills should expand to include new nursing roles in:

  1. Schools and children’s services, supporting children with intellectual disability and complex needs
  2. Primary care and hospital systems, including maternity services, with RNIDs providing knowledge, skills and competencies to specialist and general health services and family support
  3. Providing lifespan approaches addressing perinatal and end of life concerns
  4. Balancing the promotion of opportunity with quality and safety for community integration for those with an ID
  5. Engaging with other governmental programmes, for example justice, education and employment, housing and social welfare



McCarron M, Sheerin F, Roche L et al (2018) Shaping the Future of Intellectual Disability Nursing in Ireland. Health Services Executive, Ireland. RNID Report (Shaping the Future of Intellectual Disability Nursing in Ireland)

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