Executive Summary
Life expectancy of people with intellectual disabilities (ID) has steadily improved, and with this progression in longevity, there is an increased need for health and social resources. This presents a specific challenge for policymakers seeking to provide life-long care for adults with ID. Researchers at Trinity College Dublin (TCD) have documented the changing health, social, and care needs of this vulnerable population highlighting the importance of planning for diverse living arrangements across the lifespan (McCarron et al., 2011; Brennan et al., 2018, 2025; McCausland et al., 2021; Sheerin et al., 2022; Burke et al., 2023). The evidence supports individualised solutions oriented around choice for both adults with ID and the families who care for them.
Introduction
Life expectancy of people with intellectual disabilities (ID) has steadily improved, and with this improvement in longevity, there is an increased need for health and social resources. Many adults with intellectual disabilities (ID) require life-long care and as they are now living longer, require a different set of healthcare and social supports. Historically, service provision for people with ID was predicated on shorter lifespans with relatively stable characteristics, compared to today’s increasingly diverse population with complex needs (Sheerin et al., 2022). Researchers now have the opportunity to learn how people with ID age, and what their health and care needs may be later in life. With this improvement in life expectancy, governments need to plan accordingly (McCausland et al., 2021; Witsø and O’Donovan, 2023). This paper examines the provision of care for adults with intellectual disabilities in Ireland, highlighting how most adults with ID are cared for by ageing parents or other family members (Brennan et al., 2023a; Fanagan et al., 2025). We argue that public policies for supporting people with ID must also include family carers upon whom the social contract of care relies, and that such policies must be centred on choice around care decisions. Such policies would reduce the anxiety and uncertainty relating to the provision of care for both family carers and the adult with ID. We conclude with key policy recommendations in the areas of data collection, supported decision-making, respite, and care capacity planning.
The number of adults with ID requiring specialist disability services has been forecast to increase by 25% between 2018 and 2032 (National Disability Authority (NDA), 2021). Services for people with ID in Ireland are sometimes delivered directly by the Health Services Executive (HSE). More commonly however, disability services are funded through government contracts between the HSE and voluntary, non-profit service providers (Kelly et al., 2021). To facilitate accurate data collection for planning, development and organisation of these disability services, information relating to the service users and their interaction with these distributed HSE funded providers is collectively recorded in the National Ability Supports System (NASS) (Fanagan et al., 2025)[i].
The database excludes those not in receipt of specialist services. 40,210 people were registered with NASS in 2024 (5,558 children and 34,652 adults), representing a 9% increase in the number of adults reviewed compared to 2023, with 58% being over the age of 40 (Fanagan et al., 2025). The most common disability noted in NASS was ID (22,453 people or 56% of service users) with 63% of these people recorded as having a moderate, severe or profound intellectual disability (Fanagan et al., 2025). The three most common services people with ID accessed were social work, nursing, and speech and language therapy (Fanagan et al., 2025).
Population Characteristics & Demographics
People with ID represent 2.1% of the national population, with the 2022 Census recording 109,288 people affected by ID to any extent (Central Statistics Office (CSO), 2023a). However, only those in receipt of specified services are recorded in NASS, equating to 22,453 people. This means there is no accurate data relating to the provision of care for the majority of people with ID.
Key Health Challenges
Many adults with ID typically have multiple health conditions and an acceleration of age-related decline, meaning they age faster and die younger than the general population (McCarron et al., 2011; 2018; Sheerin et al., 2022; Witsø and O’Donovan, 2023). Additionally, adults with ID have an elevated dementia incidence (McCarron et al., 2018). The risk of early mortality and preventable deaths are linked to persistent health inequalities at a system, accessibility, and utilisation level (Witsø and O’Donovan, 2023). This means adults with ID are more likely to have chronic and complex medical needs which require unique models of care that can be costly and intensive, yet the health system is not organised to provide holistic or integrated care (Witsø and O’Donovan, 2023). Despite the many national policies which emphasise that a person with ID has agency over their own care, the proviso ‘where appropriate’ is attached to medical decision-making (Witsø and O’Donovan, 2023, p. 29). There is no framework for how decisions should be made, or how and who has responsibility for it (Witsø and O’Donovan, 2023). This means that despite positive recognition of personal autonomy, in reality, decision-making lacks clarity.
Key Social Care Challenges
In September 2025, Ireland published its progressive new integrative policy relating to the promotion and protection of the human rights of disabled people (National Human Rights Strategy for Disabled People 2025-2030 (Dept of Children, Disability and Equality, 2025). This new strategy outlined a holistic approach to the provision of government services to disabled persons, which orient around the concept of choice. Underpinning this strategy is the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which Ireland ratified in 2018 (NDA, 2024a). The UNCRPD assigns the same human rights outlined in the UN Declaration of Human Rights, to persons with disabilities. This rights-based approach to disabilities emphasises autonomy, choice, equality and independence as fundamental principles to enable persons with ID to enjoy comparable quality of life to other citizens (McCarron et al., 2018; McCausland et al., 2018).
In April 2023, the Irish government introduced the Assisted Decision-Making (Capacity) Act 2015 (ADMA), legislation which reformed the Ward of Court system (Government of Ireland, 2023). The ADMA was designed to confer autonomy and reform decision-making for adults who may lack capacity, consolidating legal authority for a person’s affairs to a nominated person. Additionally, the ADMA introduced planning for future care under the Advanced Healthcare Directive. Whilst noble in intent, in practice the ADMA is proving challenging – 67% of surveyed adults had never heard of the legislation in 2023, and in 2025, the National Advocacy Service identified that there were widespread, systemic problems with implementation (Safeguarding Ireland, 2023; National Advocacy Service, 2025). As with the provision of medical care, people with ID, in principle, have the right to autonomous decision-making, but in practice, this is harder to formalise.
Key Housing Challenges
Since the 1960s, there has been a global shift in reducing reliance on institutional care for people with ID (McCarron et al., 2018; Kilgannon, 2023). Deinstitutionalisation, the move from congregant or institutional care to community and home-based care, has more recently been the focus of government policy (McCarron et al., 2018)[ii].
The UNCRPD affirms the rights of people with ID to live independently, and the right to adequate housing provision (Inclusion Ireland, 2019). Ireland, however, has a national chronic housing crisis driven by constrained housing supply, coupled with high purchase costs, and poor rental affordability (Inclusion Ireland, 2019). Home ownership rates for retirees are in decline with a growing number of older people in the private rental sector. The latest census data shows a 71% increase in people in their 50s in the rental sector, rising to a 104% increase for over 60s, which raises concerns about their financial precarity and housing security (Orr et al., 2016; Slaymaker et al., 2022; CSO 2023b). This all has consequences for government policies aimed at housing provision for people with ID.
As with health and social services access, the housing system is difficult for people with ID to navigate. Adults with ID are over-represented in both nursing homes, and in homelessness figures, and approximately 26% live in rented accommodation with their families (Inclusion Ireland, 2019; NDA, 2020, 2024b). Accessing the rental market independently is inherently more difficult for people with ID. Adults with ID are less likely to be in employment and more reliant on social supports, and may require adaptive housing. Additionally, under the ADMA, capacity is assumed and viewed in functional terms i.e. the person with ID has decision-making capacity to secure a tenancy (National Advocacy Service, 2025). As a consequence of housing policy, most adults with ID are living within the family home, with a primary carer, usually a parent (Inclusion Ireland, 2019). This creates an informal care arrangement which relies on parental/family carers, with few supports from the HSE, and a category of people for whom housing provision is not prioritised (Inclusion Ireland, 2019; Brennan et al., 2025).
Negotiating Care: The Family and the State
Family care remains the dominant form of support for people with ID, and approximately 12,000 aged over 25 lived with their parents in 2022 (CSO 2023b; NDA, 2024a). Projections are that the number of young adults with ID is projected to increase by one third by 2032 (Brennan and D’Eath, 2023).
Historically, many people with ID were institutionalised, however, the rights-based social model has assumed that the family is the natural locus of care, a constructed role which is reinforced through government policies aimed at supporting carers (Brennan et al., 2023a, 2025). Yet many family carers have difficulty in accessing services, and experience the care system as dehumanising and fragmented and thus, an additional source of caregiver stress (McCarron and McCallion, 2016; Family Carers Ireland, 2024).
Whilst family caring can be positive, informal care presents specific challenges (Brennan et al., 2023). The decline in family size, labour market mobility, women’s participation in the workforce, instability in the housing market, and ageing all present challenges to care capacity (Brennan et al., 2018, 2020, 2025). Though some adults with ID may attend work or day programs, or be in receipt of supports, many adults with ID may not engage with services until later in life (McCarron and McCallion, 2016). As care recipients age, this increases the pressure on ageing parent carers to navigate complex bureaucracy when they themselves may have additional emotional, financial, and health needs.
Whilst family care is socially constructed as either a natural or assumed responsibility, this is context dependent and in a rights-based model should be a choice – however, choice is limited by a constrained housing, social and health system (Brennan et al., 2023a, 2025).
Ageing & ID: a Dual Challenge
As populations age and household structures change, OECD countries have seen an increasing demand for long-term care (LTC) for people over 65 years of age (OECD, 2024b). LTC is projected to double by 2050, and these costs present a significant challenge for social care provision (OECD, 2024b). LTC systems are often distributed across variable government sectors, resulting in fragmented services with gaps in access and coverage. To reduce the costs associated with LTC, some countries have oriented toward preventive health measures aimed at promoting healthy ageing and improving quality of life (OECD, 2024b). Healthy ageing enables older people to remain in their homes and communities, and thereby reduces the cost of low and moderate residential institutional care, which is typically more expensive (OECD, 2024b). In the 2022 Census, the population of Ireland was recorded as 5,149,319, with an ageing profile, the highest increase in population was in the over 70s age group, and the number of people over 85 years increased by 25% compared to 2016 (CSO 2023b, p. 202).
Approximately 300,000 unpaid carers (6% of the population) are recorded in the latest census, about 15% of those carers are aged over 65 (CSO 2023b). Unfortunately, the census does not distinguish which carers support adults with ID, or whether the carers themselves require long-term care or other supports. Adults aged over 50 formed the highest proportional increase in those being provided with family care (Kelly et al., 2021). NASS indicates that most people using their services are adults with ID, 17% of whom are aged over 60, the majority of them with significant and complex needs. NASS records demonstrate that most people with ID in their service have a primary carer, of which 73% are parents, 38% being over the age of 60, including 10% being over the age of 80 (Fanagan et al., 2025).
Research consistently shows that few ageing family carers have formal plans for the future care of their adult relative, this has been attributed to low life expectancy i.e. parents outlived their children, however, this has changed and planning is essential (Taggart et al., 2012; Brennan et al., 2018, 2020, 2023b).
Future Planning
Primary concerns for ageing parents orient towards future care of their adult child. As the ability to provide family care declines, coupled with the increase in life expectancy for people with ID, demand for residential services is seen by many family carers as the only feasible long-term option (Brennan et al., 2018).
Many families find there are limited alternatives to family care and there has traditionally been a reluctance to engage in future care planning (Brennan et al., 2023; Brennan et al., 2025; McCarron and McCallion, 2016). This reticence is driven by stress, anxiety, uncertainty and concern about the adult with ID and their decision-making capacity (Taggart et al., 2012; Brennan et al., 2018).
Though the ADMA was introduced to empower the adult with ID to make decisions about their care, challenges remain (National Advocacy Service, 2025). Further, the latest national policy strategies do not establish how decisions should be made or the role of family caregivers in the provision of care (Dept of Children, Disability and Equality, 2025). Recent evaluations of the ADMA point to the need for co-designed accessible resources to guide supported decision-making planning and implementation (Casey et al., 2025). The Future Care Road Map (FCRM) was devised as a supported decision-making tool to empower adults with ID and their family carers to plan for future care (Brennan et al., 2019; McCausland et al., 2019). FCRM was designed specifically to assist families in early planning in conjunction with the care recipient and service providers, which in turn should enhance service provision. Thus, practical resources such as FCRM may be better suited to the needs of supported decision-making for people with ID, rather than the ADMA.
Policy Recommendations
Improved Data Collection
Good data is necessary for optimal service planning. Though census data identifies the numbers of people providing care in the state, it does not capture information about who they care for, how long they care for, and how and why they provide care. Whilst Ireland does record data relating to people with ID via the NASS database, this is directly limited to the actual service user, i.e. the person with ID. The NASS, whilst useful, is also limited to specified services. Further, it does not include data relating to unpaid carers, who are predominantly ageing parents, or other family members. Given the multiple agencies involved in delivering services, the variance in the way different agencies collect data across a dispersed health and social model, plus the large number of people with disabilities not captured on the NASS, Irish policymakers should consider the creation of a single comprehensive national database, incorporating such data.
Develop a comprehensive national database on disability and care needs
A universal dataset would enable the optimisation of service development, planning and delivery, particularly in the context of a diverse set of needs and an ageing population.
Expand national data collection to include unpaid family carers
Ireland has no national data for the number of parent-carers of adults with ID. No data is gathered on the health needs of ageing carers, or their housing, financial, or support needs, or their own requirements for long-term care (Kelly et al., 2021). To complement service planning, government policy could link adults with ID with their primary carer. This unique approach has recently been integrated into a flagship longitudinal study on ageing and ID (IDS-TILDA, TCD). Disability and ageing supports could thus be integrated into longer term care strategies and healthy ageing programs.
Incorporate service preferences into cost effective planning
At present, there is no standard approved needs assessment tool for people with disabilities in Ireland (NDA, 2018). This means that the data on which services are planned may require supplementation. What needs people with ID have, and how they want to be cared for, is essential to providing accurate data for effective planning and optimising the provision of care.
Supported Decision-Making
Embed supported decision-making across health and social care
The three key areas of housing, medical and social care exhibit the same grey zone with regard to decision-making frameworks. If the ADMA is retained, clarity around how decisions should be made and who gets to make them, and in what contexts, needs to be elaborated (National Platform of Self Advocates, 2025). Standardised training for clinicians and service providers should be rolled out. Plain language accessible documents need to be provided with clear pathways for decision-making outlined. Uptake should be monitored via service audits.
Advance Care Planning
Transitions need to be planned when family care is no longer possible. This requires structured pathways for transition planning, and the use of tools such as FCRM offers a guide to service providers, people with ID, and their family carers, to co-create long-term plans. This would reduce crisis placements, and anxiety over future care for both care recipients and their families. It enables service providers to see how and why future care plans are being made, and allows effective service development based on projected desires and needs.
Living Solutions and Future Transitions
Irish policy is characterised by a legacy of institutionalisation, and a growing reliance on families for life long care, but with few formal supports. This presents a social contract of care which is no longer fit for purpose. Demand for services is increasing as the population ages and though policy reforms aspire to be person-centred, substantial gaps remain in implementing these strategic visions.
A key objective must be to provide appropriate housing whether this is residential, community or family based. In tandem with these housing options, transition planning must feature. This engages service providers, family carers and the person with ID in defining what their optimal living standards should be. Given the economics in providing tailored, person-centred care, this must extend to family carers and not just the person with ID – both have rights and needs. The social contract of care assumes that family carers can and will provide care, and if this is to remain a cornerstone of government policy, then it must include sustainable and cost-effective solutions which work for family carers.
Strengthen Family and Community-Based Supports
To optimise the role of family care, improvements need to be made in supporting carers. This includes income supports, social supports, housing security, an increase in respite availability and crisis prevention programs. This may also integrate long-term care options for ageing carers who may independently need services.
Respite
Family carers may experience increased levels of stress due to the demands of caring for their relative with ID. Respite care provides family carers with essential overnight residential care for their relative with ID. This may be short or long-term respite, for example to enable the family carer to access medical treatment, or as a reprieve from the responsibility of caring. Respite availability should be scaled up, in part as a crisis prevention strategy, but also to support ageing carers (Kelly et al., 2021). Emergency respite in particular is under-resourced, expensive, and reactive, with out of area placements for people with complex needs averaging annual costs of €264,170 per person, with variation in the provision of regional services (Cullinan et al., 2024). In general, however, respite provision is also inadequately resourced and capacity falls short of need. Only one in four lone carers of people with ID were reported to receive respite breaks (Doyle et al., 2023). Yet, as national demographic trends demonstrate, an increasing proportion of people with ID are projected to live with a lone parent (Brennan et al., 2018; Doyle et al., 2023). For those recorded in NASS, respite in a respite centre or community house was the most common type of overnight respite in 2024, again with demand outstripping supply (Fanagan et al., 2025). 74% of those requiring overnight respite were people with ID (Fanagan et al., 2025). Family carers emphasise there is no formal right to respite care, nor can they plan when respite may be available (Family Carers Ireland, 2024).
If the government policy is to facilitate social models of care, this must include a planned approach which works for family carers in order to be sustainable. Such an approach could incorporate lower cost in-home respite resources. This will enable a reduction in high cost crisis placements, and a proactive rather than reactive approach to respite that better meets the needs of family carers, which in turn will require significant government investment.
Workforce Capacity Planning
With a primary goal to support community living for people with ID, the associated economics of service delivery are complex, and include the cost of housing, redesigning community models of care, appropriate levels of staffing with requisite skills and competencies, and transition planning (McCarron et al., 2018; NDA, 2018). These challenges have prompted the planned expansion of training and work placements to meet projected demand for health and social care professionals, by the government, with the intent to avoid replicating institutional practices within community settings (Dept of Children, Disability and Equality, 2025). Workforce planning must consider the mix of professions, and the diverse competencies needed for community-based, social models of care, supported by professional and regulatory stakeholders (NDA, 2018). A global nursing shortage suggests that the reliance on international recruitment to plug workforce shortages is not sustainable (Simoens et al., 2005; OECD, 2024a), yet this is the articulated strategy in the recent government policy (Dept of Children, Disability and Equality, 2025). As adults with intellectual disabilities (and their family carers) age, the need for complex care may emerge later in life, requiring future access to specialist services and appropriate residential or clinical supports. Appropriate planning must consider not just the reduction in specified services or skills in the process to transition, but also how to safeguard those skills and services at a later stage in a person’s life course.
Conclusions
Ireland’s social policy architecture for intellectual disability care is forward thinking and rights-oriented, however, achieving this strategy for person-centred care requires commitment and investment. Adults with ID have diverse needs that evolve over time. Many adults with ID age faster and die younger than the general population. As they age, people with ID may develop complex medical needs which require a holistic response within a healthcare system that is not fit for purpose/need. In addition, people with ID need lifelong care, with varying degrees of intervention/social support.
Whilst the current policy framework in Ireland demonstrates a commitment to rights-based and person-centred models of care, in practice, this is a complicated service. In part, this can be attributed to fragmented services and a lack of core data which omits the large numbers of family carers.[iii] This means that policy frameworks which rely singularly on the rights and needs of the person with ID fail to acknowledge the significant contribution that family carers make to enabling these policies. Though the government has recognised the need for integrated service provision, improvements in housing, and capacity planning for health and social staff, such policies do not consider in any meaningful way, the role of family carers.
Most adults with ID are cared for by ageing parents, with other family members stepping into long-term care provision when parents no longer can (Brennan et al., 2023a). To meet these needs, a clear pathway to decision-making is required, particularly when the adult with ID may lack capacity to consent or make decisions about their own care. Care decisions may need to be made by family carers who require integrated, holistic models of medical, social, and housing supports.
Policies for supporting people with ID must therefore also include family carers upon whom the social contract of care relies. Family carer needs must also be factored into data collection, and service provision. Family carers want to care for their relatives with ID, and the state needs to provide them with the tools and supports to do this successfully, planning for the life cycle of the carers, as much as the person with ID.
Public policy must therefore support choice: choice of where to live, choice over who provides care, and choice over the balance between independence and supported living assistance. Choice, however, is only feasible if the investment in infrastructure is there to support it, starting with the early formation of long-term care plans and inclusion of family carers.
About the Authors
*Corresponding Author
Prof Damien Brennan is the project lead on the Family Carer’s Study, affiliated with the Trinity Centre for Ageing & Intellectual Disabilities (TCAID), Trinity College Dublin (TCD). Prof Brennan works on research oriented to the best provision of care for people with ID, designing evaluations, improving workforce training, and working with families who provide care to improve future care options.
Dr Ciara Henderson* is a research fellow on the Family Carer’s Study, within TCAID, TCD. Dr Henderson works on policy related research oriented to the provision of care in health and social services.
Prof Mary McCarron is Professor of Ageing and ID, PI of IDS TILDA, Director of TCAID and Executive Director of the National ID Memory Service at TCD
Dr Maureen D’Eath is a postdoctoral researcher working on family care experiences, with a focus on ID and ageing, and a collaborator with TCAID.
Prof Philip McCallion, Senior Academic Advisor to TCAID, a John A. Hartford Foundation Social Work Faculty Scholar and Mentor, and a member of the steering committee of the National Task Group on Intellectual Disabilities and Dementia.
Glossary
ADMA Assisted Decision-Making (Capacity) Act
CSO Central Statistics Office
DFI Disability Federation of Ireland
FCRM Future Care Road Map
HSE Health Service Executive
ID Intellectual Disabilities
LTC Long Term Care
NASS National Ability Supports System
NDA National Disability Authority
NIDD National Intellectual Disability Database
NPSDD National Physical and Sensory Disability Database
NDSD National Day Service Database
OECD Organisation for Economic Co-operation and Development
TCAID Trinity Centre for Ageing & Intellectual Disabilities
TCD Trinity College Dublin
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Endnotes
[i] Ireland is one of the few countries to maintain a database of service users with ID. NASS was initially established in 1995 as the National Intellectual Disability Database (NIDD), and merges older, legacy databases such as the HSE National Day Service Database (NDSD), and the National Physical and Sensory Disability Database (NPSDD) (Fanagan et al., 2025). The NASS database includes geographic service provision, and details relating to day service users, such as, age, type of care, primary and secondary disabilities, and for those with ID records the degree of assessed ID (mild, moderate, severe or profound) (Kelly et al., 2021).
[ii] Congregant settings are institutions with 10 or more residents, community settings are when each unit contains no more than four residents (McCarron et al., 2018).
[iii] The exception to this is the longitudinal data gathered in the Family Carer’s study within IDS-Tilda (the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing), the flagship project within the Trinity Centre for Ageing and Intellectual Disability (TCAID). This study researches ageing in Ireland among people with an intellectual disability aged 40 and over.