Siloed approaches to disability and ageing

Undergirding these issues is the fact that older people with impairments tend not to be regarded as ‘disabled’ in the same way as children or younger adults might be, as impairment tends to be considered a social norm of ageing (Priestley Reference Priestley2002, Reference Priestley, Goodley and Lawthom2006). Indeed, the very definitions of what ‘disability’ is differ within approaches to ageing and to disability. ‘Disability’ in older age is usually seen in medicalised or functional terms, typically as inability to perform certain routine actions or in terms of ‘frailty’ (see, among others, BURDIS 2004; Verbrugge and Yang Reference Verbrugge and Yang2002). A consequence is that broader cultural and social-structural influences are overlooked in explanatory frameworks for disablement in older age (Kelley-Moore Reference Kelley-Moore, Dannefer and Phillipson2010) and limited attention focuses on subjective experiences of disablement processes in older age (Leahy Reference Leahy2021). By contrast, in the context of disability generally, following the articulation of social models of disability decades ago, all definitions or models informing scholarship and activism reject a view of disability as the sole result of individual differences or biology. Instead ‘disability’ is linked to a range of contextual factors – cultural, social, economic and political (see, among others, Goodley Reference Goodley2011; Oliver Reference Oliver1990, Reference Oliver1996; Shakespeare Reference Shakespeare2021).

Public policy frameworks on disability and on ageing tend to remain separate. Typically, policy approaches to ageing are based on a medical model, sometimes involving ‘custodial’ care, while approaches to disability have evolved towards a social care model (Monahan and Wolf Reference Monahan and Wolf2014, S1). Thus, in general terms, disability policies encompass social aims and aims of independence (Monahan and Wolf Reference Monahan and Wolf2014), but older people experiencing disability can be ineligible for supports such as disability-related grants or rehabilitation services (Devandas-Aguilar Reference Devandas-Aguilar2019). Competing ideologies and languages, complexity and illogicality are associated with these separate administrative categories on disability and on ageing and with transitions between them in several countries (see Coyle and Mutchler Reference Coyle and Mutchler2017; Era Reference Era2021; Jönson and Larsson Reference Jönson and Larsson2009; Leahy Reference Leahy2018; Molton and Ordway Reference Molton and Ordway2019; Priestley and Rabiee Reference Priestley and Rabiee2001; Putnam Reference Putnam and Putnam2007). For example, a tendency is identified to define older people with disabilities as ‘elderly’ rather than ‘disabled’, and not to treat them as if they have the same rights to support as their younger peers (Jönson and Larsson Reference Jönson and Larsson2009; Leahy Reference Leahy2018; Mastin and Priestley Reference Mastin, Priestley and Sargeant2011). When we look to the EU, the Green Paper on Ageing (European Commission 2021a) includes references to disability experienced in older age, as does the EU Disability Strategy (albeit to a very limited extent) (European Commission 2021b), but policies and initiatives on long-term care tend to be approached separately (Georgantzi Reference Georgantzi2023; see Social Protection Committee and European Commission 2014; OECD/European Commission 2013). In several European countries, supports to live independently in the community, such as personal assistance, are limited to people of working age or are available only to older people who have been receiving them prior to age 65 (European Network on Independent Living (ENIL) 2013,Footnote ² 2018). Human rights concerns are also highlighted in respect of quality of long-term care available to older people in their homes (Equality and Human Rights Commission 2011) and in residential settings (ENNHRI 2017).

Furthermore, policies are not well developed across many countries for people ageing with disability (Bigby Reference Bigby2002; Carter Anand et al. Reference Carter Anand, Davidson, Macdonald, Kelly, Clift-Mathews, Martin and Rizzo2012; Raymond et al. Reference Raymond, Grenier and Hanley2014). Transferring from one service category to another due to chronological ageing can mean that ‘the orientation of services shifts from supporting independence to reproducing dependence’ (Walker and Walker Reference Walker and Walker1998, 127) and there can be fears that control/choice will diminish within services for ‘older’ people (Putnam Reference Putnam and Putnam2007, Reference Putnam2017). The phenomenon of more people ageing with disability, therefore, challenges different sectors to intersect more.

When we turn to consider disability scholarship and activism, the focus tends to be people with disabilities of working age and children (Priestley Reference Priestley, Goodley and Lawthom2006). Connections between forms of discrimination associated with being older and being disabled are slow to emerge and very limited attention has been paid to people who acquire impairments with ageing or even to people ageing with disability (Thomas and Milligan Reference Thomas and Milligan2018). Simultaneously, ‘positive’ ageing discourses shape how people growing older think about ageing (Estes et al. Reference Estes, Biggs and Phillipson2003; Pack et al. Reference Pack, Hand, Rudman and Huot2019). These discourses risk constructing experiences of disability in older age as a personal failure and can contribute to exclusion of people who do not fit the ‘positive’ model (Kahana and Kahana Reference Kahana and Kahana2017; Larsson and Jönson Reference Larsson, Jönson, Ayalon and Tesch-Römer2018; McGrath et al. Reference McGrath, Rudman, Polgar, Spafford and Trentham2016). In this context, ideas of ‘normal ageing’ have come to be associated with maintaining norms of self-care aimed at delaying or denying ‘decline’ (Higgs et al. Reference Higgs, Leontowitsch, Stevenson and Jones2009, 703), and efforts to counter ageism involve dissociating older age from illness, impairment and dependency (Larsson and Jönson Reference Larsson, Jönson, Ayalon and Tesch-Römer2018). Thus, scholarship on ageing engages with ‘disability’ largely as an ‘undesirable condition’ to be ‘limited in scope and compressed in time’ (Kahana and Kahana Reference Kahana and Kahana2017, 5), and civil society organisations working on ageing often identify with ‘active ageing’ rather than with disability issues or as organisations of people with disabilities.Footnote ³

Human rights and older people

The efficacy of adopting a human rights approach to disability in older age is starting to be recognised, especially in respect of experiences of dementia (Aubrecht and Keefe Reference Aubrecht and Keefe2016; Dementia Alliance International 2016; Shakespeare et al. Reference Shakespeare, Zeilig and Mittler2019; Thomas and Milligan Reference Thomas and Milligan2018) and some countries have developed/updated dementia strategies to become more strongly rights-based (Cahill Reference Cahill2022). Human rights perspectives that engage with the CRPD are also emerging in debates on care of older people (see Birtha et al. Reference Birtha, Rodrigues, Zólyomi, Sandu and Schulmann2019; Morrison-Dayan Reference Morrison-Dayan2023; Steele et al. Reference Steele, Carr, Swaffer, Phillipson and Fleming2020). Furthermore, in recent years, European umbrella organisations among ageing and disability movements highlight that older people with disabilities cannot access certain services or may face discrimination on grounds of age when accessing services. For example, ENIL (2013, 2018) notes several countries where availability of personal assistance is subject to age-ceilings, and AGE Platform Europe (2017, 2019) identifies countries where laws and policies impose age limits on access to disability benefits, mobility allowances or personal assistance.

The consequences of siloed approaches to ageing and disability continue, including how age-sector organisations are rarely consulted by national governments on the CRPD or on developing disability policies. In fact, in a position paper on Article 19 CRPD, AGE Platform Europe (n.d.) reports findings from a survey amongst its members that a majority were not involved in implementing/monitoring the CRPD in their countries and some were not aware of its existence. Alongside this, discussions of shortcomings in the human rights framework for older people are increasingly prominent. Thus, while existing human rights standards address universal rights of all individuals, including older people, no distinct international convention specifically addresses rights of older people (Birtha et al. Reference Birtha, Rodrigues, Zólyomi, Sandu and Schulmann2019). The UN Open-Ended Working Group on Ageing is considering the possibility of a new UN convention on the rights of older people (that is, one addressing ageing in broad terms). Bodies like AGE Platform Europe and ENNHRI have advanced this discourse (Birtha et al. Reference Birtha, Rodrigues, Zólyomi, Sandu and Schulmann2019). Progress has, however, been slow in progressing the Working Group’s mandate (ENNHRI 2022) and the Office of the High Commissioner for Human Rights (2021) suggests that the Covid-19 pandemic has highlighted the urgency of improving international human rights frameworks for older people.

This article does not engage with arguments about the proposed Convention on the Rights of Older Persons, but focuses on the CRPD, whose provisions come closest at present among human rights instruments to providing a legal framework to protect the rights of older people with disabilities (or older people termed as having impairments or care/support needs) (Birtha et al. Reference Birtha, Rodrigues, Zólyomi, Sandu and Schulmann2019). A starting point is that, despite challenges, the CRPD has potential to contribute to realising rights for older people with disabilities that is under-recognised within approaches to ageing among scholars and non-governmental organisations (NGOs). As ENNHRI (2016a) highlights, we need greater recognition of the relevance of Article 19 CRPD (‘Living independently and being included in the community’) to older people with disabilities by all stakeholders, and greater investment by governments in developing community-based services.

Relevant features of the CRPD

This section outlines key features of the CRPD, starting with its definition of ‘disability’. The CRPD conceptualises disability as resulting from ‘the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others’ (Preamble, para. 5 and Article 1 CRPD). In this respect, the CRPD is said to embrace a social-contextual model of disability (Broderick Reference Broderick2015; Broderick and Ferri Reference Broderick and Ferri2019). The CRPD is also said to embed a human rights model of disability, emphasising human dignity and valuing impairments as part of human diversity (Degener Reference Degener2016, Reference Degener, Della Fina, Cera and Palmisano2017).

The CRPD is viewed as uniquely inclusive by comparison with other human rights treaties – emphasising participation of people with disabilities in developing domestic laws, policies and practices (Arstein-Kerslake et al. Reference Arstein-Kerslake, Maker, Flynn, Ward, Bell and Degener2020). Related provisions are found in Article 3 and also, inter alia, under rules on implementation and monitoring the CRPD (Articles 4 and 33). Article 4(3) requires consultation and active involvement of people with disabilities, through representative organisations, in developing and implementing the CRPD and in ‘other decision-making processes concerning issues relating to persons with disabilities’. In guidelines, the CRPD Committee (2018, para. 11) suggests that ‘representative organisations’ are those governed and led by people with disabilities who are to compose a clear majority of their membership. Article 4(3) specifically refers to ‘children with disabilities’ but does not specify other groups such as older people.Footnote ⁴ Article 33 deals with implementation and requires that ‘Civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process’ (Art. 33(3)). Article 33(3) CRPD, therefore, while highlighting again the participation of representative organisations of persons with disabilities, also anticipates broader civil society engagement in implementation. Furthermore, guidelines issued by the CRPD Committee addressing participation in its work also refer many times to ‘civil society organizations’, who are welcome to make written submissions that contribute to the review of states parties’ reports (CRPD Committee 2014, Annex II).

States that have ratified the CRPD are required by Article 19 to ‘recognize the equal right of all persons with disabilities to live in the community, with choices equal to others’, and to take ‘measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community’. Realisation of this right requires structural change, including de-institutionalisation, according to the CRPD Committee (2017, para. 41). The CRPD Committee (2017, para. 8) states that the right to independent living ‘refers to all persons with disabilities, irrespective of … age’, and guidelines issued in respect of de-institutionalisation state that ‘efforts should include older persons with disabilities, including those with dementia’ (CRPD 2022, para. 52). Civil society organisations have lobbied governments to end the institutionalisation of people with disabilities and support independent living, often focusing on younger people with disabilities, even though many older people prefer to remain in their own homes and even though many care settings display characteristics of institutions (ENNHRI 2017). Thus, efforts made to support people with disabilities to transition to community-based care may not be seen as relevant for older people, and more attention is required to be paid to the relevance of Article 19 to older people with disabilities (ENNHRI 2016a, 2016b).

Mixed picture relative to ageing in definitions of disability

Fundamental issues are not clearly addressed in reports, starting from the fact that they tend not to define the terms used to address issues of ageing. It is often unclear if, when they talk about ‘disabled people’ or ‘people with disabilities’, that is meant to include older people with disabilities. However, reports frequently refer to ‘older people’ (or cognate terms such as ‘elderly’ or ‘retired’) alongside ‘disabled people’ (or cognate terms like persons/people with ‘disability/disabilities’ or ‘special needs’), which suggests that a distinction is made – in other words, older people with disabilities are apprehended as ‘older’ rather than ‘disabled’, consistent with research findings (Jönson and Larsson Reference Jönson and Larsson2009; Leahy Reference Leahy2018). Thus, reports rarely specify that they are addressing the situation of older people with disabilities, although that is implied by the fact that there are any references to ‘older’ people at all in reports made under the CRPD. Reports tend not to distinguish between the two groups mentioned already – people ageing with disability or people experiencing disability with ageing. Reports also sometimes refer to people experiencing dementia, reflecting perhaps dementia advocacy invoking the CRPD (see, among others, Dementia Alliance International 2016). This also begs the question as to why only that experience of impairment in older age is specifically highlighted.

Reports reviewed often address ‘disability’ definitions in laws/policies in their countries in opening sections, typically addressing Articles 1–4 CRPD. From the point of view of ageing, there was a mixed picture in terms of whether definitions encompass older people with disabilities or whether they seek to exclude them. It was common for definitions of ‘disability’ not to include any specific reference to ageing, consequently not making it explicit if older people with disabilities were understood as included. Some reports propound definitions that explicitly include older people (among them CRPD/C/LV/2–3, para. 9; CRPD/C/LTU/1, para. 7; and CRPD/C/EST/1, para. 9). It was also commonplace for reports to refer to several definitions used in different contexts or under different laws/policies. Definitions used in the context of employment could define disability with regard to capacity to work, sometimes specifying an upper age limit (or ‘retirement age’) in this context (see, among others, CRPD/C/AUT/1, paras. 17, 20; CRPD/C/EST/1, para. 10; CRPD/C/ITA/1, para. 3; CRPD/C/LTU/1, para. 9).

These were not the only definitions that involved exclusions on age grounds; some other definitions explicitly exclude disabilities linked to ageing. Among these, for example, reports from Austria reference definitions excluding people with ‘age-related’ impairments (CRPD/C/AUT/1, para. 21; CRPD/C/AUT/2–3, para. 35). Thus, a reference is made to a law which states that ‘persons with impairments are those who, due to the failure of important functions as a result of physical, mental, intellectual or multiple such (not predominantly age-related) impairments, are lastingly and significantly disabled in an important social context’ (CRPD/C/AUT/1, para. 21, emphasis added).

Other reports include definitions of disability by reference to activities considered normal, appropriate or typical for a given age – a somewhat ambiguous formulation but one that may attempt to exclude disability experienced in older age or suggest tacit acceptance of lower levels of ambition in terms of functioning or support at older ages. For example, this is how a law defining disability is referred to in a report from Croatia (CRPD/C/HRV/1, para. 10): ‘a person with disability is a person with a permanent limitation, reduction or lack of capability to perform some physical activity or psychological function appropriate for his/her age, arisen as a consequence of health impairment’ (emphasis added).

Similarly, a Swedish report (CRPD/C/SWE/1, para. 14) refers to legislation whose target group is defined as persons ‘with other permanent physical or mental disability that is obviously not due to normal ageing’. A German report (CRPD/C/DEU/1, para. 15) refers to deviations from functioning ‘typical for their age’ and a report from Belgium (CRPD/C/BEL/1, para. 9) refers to disability as limiting/preventing the fulfilment ‘of a role usual for a person’s age’ (see also CRPD/C/CYP/1, para. 20; and CRPD/C/POL/1, para. 3).

Somewhat related to the issue of disability definition, reports cite statistics as to population levels of people with disabilities or numbers availing of certain services. Typically, these reports cite overall numbers of people with disabilities without stating if that includes older age-groups. Some statistics cited, however, draw on particular reports or surveys that exclude people above certain ages (see CRPD/C/CYP/1, para. 22). On the other hand, there are several reports that specify that statistics cited include older people with disabilities (among them CRPD/C/EST/1, para. 11; CRPD/C/HRV/1, para. 4; CRPD/C/LV/2–3, para. 19; and CRPD/C/SWE/1, para. 10). For example, the initial report from Sweden (CRPD/C/SWE/1, para. 10) refers to using ‘an approximate definition’ and to there being ‘between 1.1 and 1.5 million persons of all ages with disabilities of varying degrees’.

Overall, therefore, a mixed, and sometimes ambivalent, picture emerges, with some definitions of disability in use whose effect seems to be to exclude age-related conditions, and, therefore, many older people experiencing impairment, from the category ‘disabled’. At least in some contexts, reports appear to construct impairments as a natural and ‘normal’ part of older age. It is perhaps ironic, and emblematic of the siloed approaches within different fields, that in this context it appears that impairment is considered to be part of ‘normal’ ageing and, thus, not ‘disability’, while in scholarship on ageing, ‘normal ageing’ is associated with distancing from disability, or denial of ‘decline’ (Higgs et al. Reference Higgs, Leontowitsch, Stevenson and Jones2009, 703).

Services/programmes support living at home but tacit acceptance of institutionalisation for older people with disabilities

The second theme concerns how reports address care and supports to live at home, specifically relating to Article 19. There were reports whose sections addressing Article 19 did not refer to any issues to do with older people or ageing. Among them are reports from Cyprus (CRPD/C/CYP/1), Hungary (CRPD/C/HUN/1), Malta (CRPD/C/MLT/1), Portugal (CRPD/C/PRT/1), Romania (CRPD/C/ROU/1), Slovakia (CRPD/C/SVK/2–3), Spain (CRPD/C/ESP/1) and the UK (RPD/C/GBR/1). There are others whose sections addressing Article 19 refer to ageing/older people in very limited terms (see, among others, CRPD/C/BEL/1, but see para. 190; CRPD/C/EST/1, but see para. 122; and CRPD/C/SVK/1) and still others that refer to programmes of support targeted specifically at ‘older’ people (see e.g., CRPD/C/HRV/1, para. 102). It is impossible, however, to know whether – even where a report contained no specific mention of older people in addressing Article 19 – the references to ‘disabled people’ (and cognate terms) are meant to encompass older people with disabilities. Also, as already mentioned, reports tend not to clarify if they are referring to people ageing with disability or to people first experiencing disability with ageing.

Reports that engage specifically with issues of ageing in respect of Article 19 typically do so by outlining actions taken or planned to support ‘older people’ (or cognate terms) or people with dementia to live at home, referring to laws, policies or programmes, often alongside services provided to ‘disabled people’ (or cognate terms). This could encompass a range of items such as care and support, home help or personal assistance, housing arrangements and community supports such as centres, education or training. There were many examples. Among them, the Greek report (CRPD/C/GRC/1) contains several references to older people (or cognate terms) in the context of Article 19 alongside references to ‘disabled people’ (or cognate terms). One paragraph refers to ‘independent living’, stating that ‘This action aims at safeguarding independent living conditions for elderly and disabled people at their homes, in order to ensure their stay in a familiar physical and social environment, avoid referral to closed care structures and prevent social exclusion’ (para. 167, emphasis added, see also paras. 163–166, 169). Other examples (i.e. of references to services available to ‘older people’ and to ‘people with disabilities’) are found in the following reports, among others: CRPD/C/AUT/1, para. 180 and others; CRPD/C/BGR/1, paras. 97, 99 and others; CRPD/C/CZE/1, paras. 182, 187 and others; CRPD/C/DEU/1, paras. 149, 151; CRPD/C/DNK/1, para. 170; CRPD/C/FRA/1, paras. 164, 170, 173 and others; CRPD/C/ITA/1, paras. 59, 65; CRPD/C/LVA/1, para. 183; CRPD/C/SVN/1, paras. 91–92, 100. However, on the whole, these statements can be quite brief and tend to be couched in quite general terms. It is impossible to glean whether different criteria or service models apply to people experiencing disability in older age, but several reports (discussed later) refer to services/supports from which ‘older people’ are excluded.

There are some specific references to services designed (or planned) to prevent institutionalisation of older people with disabilities (see e.g., CRPD/C/LVA/1, para. 18; CRPD/C/NLD/1, para. 192) and this is explicit or implied in the many reports that reference supports to live at home for older people just discussed. However, a report from Denmark was notable in including a reference to ‘older persons’ in the context of closure of institutions, stating:Footnote ⁵ ‘As the main rule, all social housing offers intended for older persons and persons with disabilities can include this group [severe disabilities]. Since 1988, it has not been possible to establish nursing homes and “protected homes” because they are considered institutions’ (CRPD/C/DNK/QPR/2–3, para. 161).

By contrast, some discussions of de-institutionalisation focus on people with disabilities below an age-ceiling (typically age 65 or ‘pensionable age’), referring to younger people with disabilities living in nursing homes or institutions and to steps taken, or to be taken, to cease this practice. See, for example, the Irish report (CRPD/C/IRL/1, para. 235), and the second–third Belgian report. The latter (translated from French) states: ‘Unfortunately, the German-speaking Community notes that an increasing number of disabled people who have not reached pensionable age are obliged to go and live in a nursing and care home in order to benefit from appropriate follow-up’ (CRPD/C/BEL/2–3, in response to Question 18(b), emphasis added).

While de-institutionalisation is an understandable focus for younger age-groups, it is arguable that there is tacit acceptance that it is not necessary for people above certain age thresholds, tantamount to acceptance that older people with disabilities are not entitled to the rights enshrined in Article 19 to have a choice to live in the community. Furthermore, some reports specifically characterise institutions by reference to older age. For example, the initial report from Austria (CRPD/C/AUT/1, para. 200) includes an implicit acknowledgement that services for older people remain framed in different terms, citing criticism from a disability NGO to the effect that de-institutionalisation is not being progressed and that there is an ‘excessive orientation towards a paradigm of care and help for the aged’. Overall, therefore, reports can display tacit acceptance that institutionalisation involves a type of care appropriate to long-term care of older people.

Exclusions of older people with disabilities from services/supports

It was not common to find a specific focus on issues arising due to the traditional separation of services on disability and ageing, although there are examples of explicit exclusions of older people with disabilities from services available to other people with disabilities, which represents the third theme. Instances of upper age-limits are cited as applied in access to health screening or supports for working (see e.g., CRPD/C/DNK/QPR/2–3, para. 201; CRPD/C/HUN/1, paras. 187–189; CRPD/C/HUN/2–3, paras. 240–241), but the focus here is on exclusions from supports to live at home. These are found in reports from Austria (CRPD/C/AUT/2–3, para. 284), Denmark (CRPD/C/DNK/1, para. 323), Finland (CRPD/C/FIN/1, paras. 216, 363), France (CRPD/C/FRA/1, para. 164) and Sweden (CRPD/C/SWE/1, para. 151). For example, a report from Sweden (CRPD/C/SWE/1, para. 151) refers to a social reform from 1994 that included legislation to ‘guarantee good living conditions for persons with extensive and permanent disabilities’. The paragraph specifies those entitled to access this, which includes ‘persons with other permanent physical or mental disabilities that are obviously not due to normal ageing’Footnote ⁶ (emphasis added). Thus, ideas of ‘normal ageing’ are invoked to exclude older people with disabilities from access. This ‘reform’ has already been highlighted by Jönson and Larsson (Reference Jönson and Larsson2009) for its institutionalised ageism and how this constructs significant impairments among older people as a ‘natural’ part of older age rather than ‘disability’, while people of the same age who experience impairments before they turn 65 are provided with a different type of support (Larsson and Jönson Reference Larsson, Jönson, Ayalon and Tesch-Römer2018). In an instance of the ambivalence embedded within reports, the initial report from Sweden is, nonetheless, one of those that includes older people with disabilities in the statistics it cites referring to ‘persons of all ages with disabilities’ (CRPD/C/SWE/1, para. 10), as discussed already.

Other reports evidence similar exclusions of age-related disability in access to personal assistance. These include approaches taken in reports from Austria (CRPD/C/AUT/2–3, para. 284) and Finland (CRPD/C/FIN/1, para. 216). For example, the Finnish report states: ‘In the organisation of personal assistance, a person is considered as having a severe disability if … [they] need assistance from another person in order to manage daily life functions at home and away from home. Persons whose need is mainly due to ageing-related illnesses and disabilities do not qualify for personal assistance’ (CRPD/C/FIN/1, para. 216, emphasis added). Era (Reference Era2021) confirms that Finnish legislation excludes people from availing of personal assistance if their service needs mainly stem from age-related disabilities, but not specifically from other disability services, although extending this exclusion to all disability services is under consideration.

The initial report from Denmark (CRPD/C/DNK/1) in dealing with Article 28 (‘Adequate standard of living and social protection’) refers to local councils being required to cover additional expenses of daily life but only for people ‘between the age of 18 and old-age pension age’ (para. 323). A report from France (CRPD/C/FRA/1, para. 164) also suggests exclusions of older people, referring to ‘Institutions and services for persons aged between 20 and 59’ which are said to include a very broad range of services.Footnote ⁷ Indeed, France is among the countries identified by AGE Platform Europe (2019) where different schemes operate for ‘disabled’ people and for ‘older’ people.

This discussion of explicit exclusions of older people with disabilities from supports to live at home, which are said to be available to other people with disabilities, should not be taken to imply that the countries mentioned are the only ones that operate them in practice, given the age limits on supports for independent living already highlighted (ENIL 2013, 2018; see also AGE Platform Europe 2019). Neither does it facilitate cross-country comparison in terms of quality/adequacy of what is provided. As Jönson and Norberg (Reference Jönson and Norberg2023, 151, 163) argue, discussing the situation in Sweden, while legal discourse communicates ‘ageist notions’, older people excluded from disability services still receive home care and nursing home care that in international comparison ‘would likely be regarded as generous’.

However, the examples identified do suggest that a narrower range of services can be targeted at older people with disabilities with exclusions framed by way of recourse to the notion of impairments due to ‘normal ageing’ or ‘age-related’ conditions, concepts that occur also in definitions of disability, discussed earlier. As Era (Reference Era2021) argues, for an older person, an impairment may be interpreted as age-related until proven otherwise. Overall, this represents, this author suggests, unsatisfactory and ageist ways of dealing with the issues at stake. This is not least because timing of disability onset may determine rights to support for older people of the same age, or two people of different ages with similar needs and rights to support may be treated differently.

Limited attention paid to people ageing with long-standing disability

There was a paucity of attention given to the situation of, or the rights of, people ageing with disability (i.e. people who are now older having lived with disability over the long term), discussed by way of the fourth theme. One area where there often was an explicit focus on this group related to access to pensions (responding to Article 28 ‘Adequate standard of living and social protection’) by reference to transitions to retirement pensions or access to pensions before the usual retirement age (see, among others, CRPD/C/HRV/1, para. 212; CRPD/C/DNK/1, paras. 449, 498; CRPD/C/DEU/1, para. 234; CRPD/C/LVA/1, paras. 325, 330; CRPD/C/ESP/1, paras. 194, 200–202).

However, there was little focus on whether/how the situation of this group is addressed within health and care policy frameworks on disability, on whether they are entitled to the same range of supports to live at home as younger people with disabilities (under Article 19), and on whether they are required to transition to services for ‘older people’ at a given chronological age. In a few cases, references that existed focused on one group among them – people ageing with intellectual disability (‘ID’). It must also be acknowledged, given the lack of clarity around terms used in reports, that it is possible that some other references to ‘older people’ (and cognate terms) are intended to include this group without that being made explicit, or they may be included in general references to ‘people with disabilities’ without that being made clear. This makes analysis challenging and underlines the importance of states parties defining the terms used relative to older people with disabilities.

The German report represents a rare usage of the term ‘older persons with disabilities’ (responding to Article 23 CRPD ‘Respect for home and the family’). It seems likely that this is intended to relate to people ageing with disability: ‘The right to live a self-determined life also applies to older persons with disabilities … Advice services on conversions appropriate to age are being expanded, networked and professionalised. Existing programmes are being continued. Networks and services can facilitate both independence and participation in the life of society’ (CRPD/C/DEU/1, para. 186). The references here to programmes focused on ‘participation in the life of society’ can be said to carry through the more socially orientated aims enshrined within policy frameworks on disability rather than adopting the narrow/medicalised approaches to care associated with policy frameworks on ageing.

A report from Spain (CRPD/C/ESP/2–3) suggests a similar approach (see also Austrian report CRPD/C/AUT/2–3, para. 304(b)), referring to people with ID ageing prematurely and to programmes promoting personal autonomy and active ageing: ‘With regard to the promotion of personal autonomy and independent living, in residential and non-residential centres alike there are programmes to promote personal autonomy and active ageing, since persons with intellectual disabilities often age prematurely’ (CRPD/C/ESP/2–3, para. 157).

Only a few other reports explicitly reference supports for people ageing with disability, but these tend to be quite cursory references, sometimes documenting numbers benefiting from particular schemes. For example, the Finnish report refers to growth in access to personal assistance among recipients aged 65+ and lists numbers of people with ID aged over 65 accessing services, including assisted housing (CRPD/C/FIN/1, para. 221, Annex 8; see also report from Lithuania, CRPD/C/LTU/2–3, para. 158). A French report (CRPD/C/FRA/1) references ‘independent accommodation for persons with disabilities, especially older persons’ (para. 173; see also para. 249). Finally, a few reports reference war veterans, who might be assumed to constitute a group ageing with disability, suggesting that there can be special arrangements for them.

Overall, although references do exist to supports to live at home for people ageing with disability under Article 19, these are infrequent. As mentioned, ENIL (2013, 2018) documents age-ceilings in access to supports to live independently, and this can involve different levels of service after a given age, or even distinguishing in determining supports between conditions due to ageing and those due to existing disability (ENIL 2013Footnote ⁸; see also Larsson and Jönson Reference Larsson, Jönson, Ayalon and Tesch-Römer2018). Overall, lack of attention to the situation of people ageing with disability is a striking – and perhaps surprising – feature of many reports.

Lack of consultation with NGOs on ageing

Consultation is claimed to be extensive in reports, but a striking lack of consultation with groups working on ageing is evident. This illustrates ambivalence at the heart of how states parties address issues of disability in older age – including references to ‘older people’ in some contexts, yet not consulting specifically on ageing and disability. Thus, the reports reviewed almost universally refer to consultation and input by people with disabilities and their representative bodies in policy-making processes and in monitoring the CRPD (usually addressing Articles 4(3) and 33). The degree to which representatives of age organisations are not involved in consultative processes becomes especially evident in reports that name a plethora of national NGOs consulted without any organisations that, on the face of it, work on ageing. An example comes from a report from Hungary (CRPD/C/HUN/2–3, para. 5) that lists 68 NGO members of a monitoring group in an Appendix – none of which appears to be an age-sector organisation. In a Slovakian report (CRPD/C/SVK/1, para. 5), more than 30 bodies (including ministries, human rights organisations, trade union and employer representatives) are said to have been consulted in the preparation of the report. None appears to be primarily working on issues of ageing.Footnote ⁹ It is possible that some of these organisations – such as human rights bodies, social partner representatives or disability NGOs – may in fact raise issues of ageing and disability. However, that cannot be assumed, given the siloed approaches that operate; nor can it be assumed that issues concerning both people ageing with disability and people first experiencing disability with ageing would be raised.

Any references to organisations representing older people were extremely minor. For example, an Italian report (CRPD/C/ITA/1, para. 215) refers to consultation with unions ‘representing workers, pensioners and employers’. A UK report references one age-sector organisation (AGE UK) among 24 entities that identified issues relating to implementing the CRPD (CRPD/C/GBR/1, para. 351; Annex III), but in Annex II that report references consultation with 46 organisations, none of which appears to be an age-sector organisation. Nonetheless, that report (Annex III) involves a rare reference to an age-sector organisation in the reports reviewed. The paradoxical nature of this becomes apparent when one considers that older people are by far the largest group of social care users in the UK (Woolham et al. Reference Woolham, Daly, Sparks, Ritters and Steils2017; see also Mastin and Priestly Reference Mastin, Priestley and Sargeant2011).

Given the large and growing proportion of people with disabilities constituted by older people (see Grammenos Reference Grammenos2021), lack of consultation with NGOs in the age-sector appears as almost a perverse omission, even if we understand some of the legal, socio-cultural and political reasons for it. These include the relative weakness of ageing advocacy networks compared with disability networks (Sciubba Reference Sciubba2016) and the fact that organisations working on ageing do not typically identify as representatives of organisations of ‘people with disabilities’ (a classification foregrounded in consultation processes enshrined in the CRPD’s Articles 4(3) and 33).