Being an older person or a person with a disability: Are supportive policies ageist?

Abstract

The article concerns the Swedish support system’s legal discourse, and investigates the rationale for excluding people over the age of 65 from services that younger people with disabilities may obtain. Data consist of government texts and court decisions under the Severe Disability Act about services for people over the age of 65. It was found that little in the legal discourse concerns the needs and rights of older people, and the general belief is that the Severe Disability Act is primarily intended for children, young people, and adults of working age. Othering of older people was indirectly present in three assumptions about differences in categorizations (people with disabilities vs older people with support needs), needs (active age vs not active age), and comparisons (with people without disabilities of the same age vs with others receiving eldercare).

Points of interest

• In Sweden, as in many other countries, the support system excludes older people with disabilities from some services, using a division between the categories ‘people with disabilities’ and ‘older people’.

• The legislation that governs the support system communicates the message that older people with disabilities have different needs as compared to non-old people with disabilities.

• Justice for non-old people with disabilities is to have similar living conditions as people without disabilities of a similar age, and justice for older people with disabilities is to have similar living conditions as others who receive eldercare.

• The support system of Sweden rests on the assumption that disability after retirement age is caused by the process of ageing.

• People who grow old with experience of being part of disability movements may establish new identities as older people with disabilities, and challenge the present order.

Keywords:

• Ageism
• disability
• legal discourse
• life course
• policy
• Sweden

Introduction

In Sweden, two people aged 75, both with extensive support needs, may be provided with very different types of services if one has been judged to have the support need before the age of 65 and the other not. What is the logic behind this type of difference?

In recent decades, the nexus of disability and ageing has attracted greater attention, and the interest in people who grow old with disabilities has also encouraged researchers to pose new questions about the situations encountered by people who get disabilities during the period of old age (Bickenbach et al. 2012; Krassioukova-Enns and Ringaert 2012; Jeppsson Grassman and Whitaker 2013; Putnam and Bigby 2021). Researchers in a number of countries have shown that people with extensive needs are treated differently depending on whether they are regarded as ‘people with disabilities’ or as ‘older people’, and these categories have been variously linked to different concepts, theories, and ideologies (Oldman 2002; Priestley 2003; Romo et al. 2013; Jönson and Harnett 2016; Harnett, Larsson, and Jönson 2021). Policy processes for the two categories have also followed different routes. In the North American context disability advocates have focused on the possibility to act as consumers (Kane and Kane 2005) and used a legislation strategy, whereas ageing advocates have focused on organizational and financial aspects (Cohen 2007). A focus on citizenship, societal participation, equal rights and discrimination has been a prominent feature in disability policies the Scandinavian countries (Tideman 2000), but this focus has been relatively absent in ageing policies where costs have a prominent feature of policy texts (Erlandsson 2014). A difference in self-perception and use of reference groups among younger and older people with disabilities has been noted (Oldman 2002; Darling 2003; Darling and Heckert 2010; Leahy 2018). In a study by Darling and Heckert (2010) older people were less likely to use the social model and display “disability pride” and this affected the way they perceived their position in society.

Acknowledging the type of analysis that has focused on differences in strategies, activism and identities, the present study will address the difference in services and rights through the lens of ageism. Within the field of critical gerontology, studies on ageism have focused on the construction of older people as a particular category with different (lesser) needs than people of other ages, and it has been argued that disabilities during the period of old age are presented as part of the normal ageing process (Bodily 1994; Bytheway 1994; Priestley 2003; Kane and Kane 2005).

The present article uses Sweden’s disability policy’s legal discourse to investigate the motives for providing services of a different character and ambition to people of different ages, with a particular focus on the exclusion of people over 65 years of age from some services. The Swedish system is in this study used as a case of a type of differentiating logic that also appears in the support systems of a number of different countries (Council of Europe 2002; Breda and Schoenmaekers 2006; European Network of Independent Living 2013; Hoppania, Mäki-Petäjä-Leinonen, and Nikumaa 2017; Rickli 2016; Leahy 2018).

In Sweden, services for people with disabilities are granted under two separate laws. The Social Services Act states that people with unmet needs may be granted support in order to attain ‘reasonable living conditions’. The act regulates a number of services, among them eldercare and support for people with disabilities. From the legislators’ perspective, the Social Services Act introduced in 1982 had improved services and living conditions for all people with support needs (Prop. 1992/93:159), and as an addition to the Social Services Act, the Severe Disability Act (LSS, formally the Act Concerning Support and Service for Persons with Certain Functional Impairments) was introduced in 1994. The aim of the reform was to even out differences in living conditions between people with and without disabilities and the reform was a response to demands from the disability movement, and researchers, experts and politicians with links to this movement. The LSS is a special law aimed at providing ‘good living conditions’ for three different categories of people, using ten specified services. The first two categories are diagnosis-based, and include people with developmental disabilities, autism, and intellectual disabilities from birth or that have been caused by illness or trauma as adults. The third category includes people with other enduring physical or cognitive disabilities that cause them substantial difficulties in daily life, resulting in a need for extensive support or care. People over the age of 65 may find themselves in any of the three categories, receiving LSS services according to two scenarios: (i) people who were included in these categories before they reached 65 will keep their status and services thereafter; and (ii) people with needs that arise after they have reached 65 and that are ‘manifestly not due to normal ageing’ may be included in the third category. The example that is usually mentioned is disability caused by a traffic accident (SOU 2008:77). The most expensive type of service—personal assistance—cannot be granted to people over the age of 65, but following revisions to the Severe Disability Act in 2000, people who have been granted personal assistance before the age of 65 may keep (but not increase) this service once they are 65. A reason for not making older people part of a new Disability Act was the desire to break with the historical tendency to bring people with different ‘needs’ together within the help system (Jönson and Larsson 2009), and the exclusion was also motivated by costs (Proposition 1992/93:159; Proposition 2000/01:5).

Three differences in attractiveness between the Social Services Act and the LSS are important to note. The LSS is more ambitious and services are typically personalized and flexible to a greater extent, unlike for example eldercare under the Social Services Act. Services provided under both acts are publically funded, but whereas LSS services are free of charge, people who receive services under the Social Services Act pay a fee for care up to a maximum of 200 Euros a month. The LSS specifies ten rights, whereas the Social Services Act expresses general goals, and therefore services are vulnerable to municipal variation and cutbacks.

The population that is discussed in this article constitutes people below and above the age of 65 years who have comprehensive support needs. Older people who are excluded from LSS-services still receive help in the form of home care and nursing home care. In an international perspective, this help would likely be regarded as generous, so it is important to clarify that injustice in this article refers to comparisons within the country (Table 1).

Table 1. The social service act and the sever disability act.

	Social Service Act	Sever Disability Act - LSS
Introduced	1982 (later revised)	1994 (later revised)
Target population	Covers all citizens and a variety of needs. Also chapters on specific populations: children, persons with disabilities, older persons, persons with substance use problems.	Targets three specific populations with sever disabilities.
Aim	‘Reasonable living conditions’	‘Good living conditions’
Service entitlement	Not specified – support and services according to ‘need’.	Specified as ten rights.
Cost for users	Income related fee for care.	Free of charge.

Problem and aim

In relation to age and ageing, several aspects of the Swedish policy are potentially ageist. The LSS is predicated on the belief that all humans are of equal value, and that people with disabilities should be provided with living conditions that are similar to those of ‘others’ in society (Nirje 1992; Tideman 2000; SOU 2008:77). Even so, the law has age limits that exclude people over the age of 65 from some services. What is the logic behind this? Furthermore, according to the LSS the cause of a particular disability should not determine the right to help, but nevertheless the act states that people with disabilities caused by ‘normal ageing’ should be excluded from services. What is regarded as normal ageing within this context? Why should normal ageing be a cause that affect services when it is stated that the right to help should not depend on the cause of the disability?

The aim of this article is thus to critically analyse the use and conceptions of age and ageing in Swedish law as it regulates services for people with severe disabilities, in order to answer the following questions:

• What needs and rights are ascribed to ‘older people’ compared to people of other ages?

• How are known cases of exclusion based on age justified?

• To what extent is it relevant to regard the legal discourse as ageist?

In terms of theory, the analysis draws on the field of critical gerontology that relates the construction of age categories to established power relations and basic ideas on human value (Kohli 1987; Minkler and Estes 1991; Holstein and Minkler 2007). Proponents of the critical gerontology approach have not sympathized with attempts to upgrade the status of older people with the introduction of the concepts like “successful aging” (Rowe and Kahn 1987) that define success and normality as the absence of disability (Holstein and Minkler 2003).

The analysis of this article will refer to research on ageism that has analysed the stereotypical construction of older people as a category, with common characteristics and differences to other ages (Bytheway 1994, 2005). Ageism has commonly been described as stereotypes, prejudice and/or discrimination against aging people because of their chronological age, but a number of different definitions exist (Iversen, Larsen, and Solem 2009). Theories on ageism holds that older people are constructed as different, through processes of othering. Old age has also become part of an institutionalized tripartition of the life course, consisting of the basic stages of preparation, work/activity, and retirement (Kohli 1987). Age is a continuous variable, and for the category of ‘older people’ it is also open-ended (Bytheway 2005), yet the category is often held to be homogenous and associated with dependency and decline. Disability is often perceived as normal to life-course trajectories in old age (Priestley 2003). Ageism has according to Bodily (1994) its roots in the use of age and ageing as explanations for actions and differences among people. The medical model rather than the social model is dominant – disability among older people is perceived as the outcome of the ageing process (Harnett and Jönson 2017; Leahy 2018).

As noted by Bytheway (1994, 2005), institutionally established differences make ageism difficult to identify, and differences that refer to age tend to appear ‘natural’—as when a 20-year-old is compared with a 90-year-old. Given this difficulty, Bytheway (2005) has suggested that more attention should be devoted to the negotiation of transitions in the life course—occasions when categorization membership is tested. This study is a response to this call.

Analytically, the study borrows from the field of disability studies, where the concept of normality has been critically discussed in relation to the rights of people with disabilities (Nirje 1992; Tideman 2000; Priestley 2003; Shakespeare 2007). The question of how to define normality using comparisons within and between various categories is central to any understanding of the needs and rights of people with support needs. In the article, we focus on the way normality is linked to category membership in a legal discourse, and in particular how various reference groups are invoked as comparisons (Jönson and Harnett 2016).

Method

Data for the study consists of the government texts that describe the aim and scope of the Severe Disability Act, and court cases that specifically deal with issues related to ageing and older people. The primary sources for the analysis were four government white papers (SOU 1990:19; SOU 1991:46; SOU 1992:52; SOU 2008:77) and two government bills (Proposition 1992/93:159; Proposition 2000/01:5). This was judged to be the most significant legal sources relating to the present legislation. Relevant court cases were identified using the Bisnode database and selected by the legal expert on the research team, according to standard operating procedures in law research. As Sweden’s Administrative Supreme Court has not addressed some of the questions raised in the article, we also present cases from administrative appeal courts in the second-highest tier in the administrative court system, chosen for their relevance by the legal member of our team. In total, seven court decisions merited inclusion in the analysis, based on the judgement that they provided unique information on the how support needs of older people was evaluated. Quotes from the government bills are those that have been taken up by the courts as important, balanced by quotes that support important alternative ways that the courts could have decided in cases involving elderly people with disabilities. Court decisions that merely referred to the position of the Administrative Supreme Court were not included in the analysis.

Data was independently read and discussed by the two members of the team, one being a social scientist and the other a lawyer. Two types of analysis were conducted: (i) a dogmatic legal analysis (not part of this article, see Norberg 2020) to identify the correct interpretation of the law; and (ii) an analysis of the legal discourse to identify the use and logic of age and age categorizations. This meant that not only the arguments by the court itself were discussed, but also claims of local authorities and individuals who appealed, and sought to clarify or challenge practices that denied or granted people services under the LSS. Court decisions provide authorities with guidance on LSS but it should be noted that the mission of administrative courts is not to elaborate or explain the law beyond what is necessary in order to decide on a specific case. For instance, the dataset contained cases where the courts did not comments on claims about normal ageing and age-based comparisons that were invoked in the complaints, since other circumstances were used to make a decision.

The study was approved by the Swedish Ethical Review Authority (2019-04393).

Data was reviewed using two guiding questions. What types of age categorizations and comparisons are used in discussions about the needs and rights of people of different age? And what is considered as normal and normality in discussions about the needs and rights of people aged 65 and over? Based on these questions the analysis of the legal discourse revealed a type of othering of ‘older people’ which is constructed through absence of comments of a type that was visible in the case of younger people, through exclusion from what is described as the needs and rights of ‘non-old’ people with disabilities. Three othering presumptions were identified as part of this othering.

Differences in categories: ‘People with disabilities’ and ‘older people with support needs’ constitute two different categories, and support needs among people in the latter category should be presumed to be caused by normal ageing.

Differences in needs: Children, young people, and adults of working age with disabilities are of active age, and have needs that are different from people of retirement age.

Differences in comparisons: People over 65 come under eldercare, and whereas justice for younger people with disabilities is to have living conditions similar to people without disabilities, justice for older people with support needs is to have living conditions similar to others who receive eldercare.

Results

Age categorizations and active non-old people

When the LSS came into effect in 1994 it was intended to raise the ambition of support above what was provided through the Social Service Act. Therefore LSS was provided with Section 5 explicitly stating a high ambition providing assistance making it possible to ‘live like others’ as opposed to the more moderate ambition of the Social Services Act providing ‘reasonable living conditions’ in Chapter 4 Section 1. Section 5 of the LSS clearly states that the life of ordinary able-bodied people should be the norm for what kind of activities society should enable, and this goal has been operationalized as being dependent on the established stages of the life course (Jönson and Larsson 2009). The act’s purpose was ‘living conditions for people with comprehensive, life-long or long-term impairments that are equal to those of other people of a corresponding age’ (Prop. 1992/93:159 p. 64). The government bill stated that LSS services should concentrate on three categories: children, young people, and adults of working age. People over that age should be provided services under the Social Services Act. This created a basic division between the two categories of non-old and old, and while reference groups were clearly identified as people without disabilities for people of younger ages, it was not said who older people with disabilities and support needs should refer to when demanding equal living conditions.

The government texts preceding the LSS relied heavily on age-typical activities in its construction of life-stage dependent support needs: education for children and young people and employment for adults of working age. For adults, this logic was expressed in relation to one of the ten support forms of the LSS, a work- or practice-like arrangement labelled ‘daily activities’. This support was provided with three goals in mind: personal development, social inclusion, and short- or long-term possibilities of participating in regular work (Prop. 1992/93:159 p. 90). A white paper by the Disability Committee (SOU 1991:46) that preceded the government bill argued that the goals for participation in the standard labour market introduced a ‘natural age demarcation’, but added that the ambition to participate in regular labour was also unrealistic for many non-old people with disabilities. Here a different logic was invoked: ‘Despite this, or rather, with this as a point of departure, we suggest that the possibility to work is more important for the target group of the Committee, as compared to others’ (p. 298). The need to avoid isolation and increase participation in work-like activities were mentioned as reasons. This implied that isolation and social participation were primarily issues for people under retirement age. A similar distinction has been noted by Erlandsson (2014) in a study of online representations of the LSS and eldercare services. Participation by younger people was framed in terms of participating in society as part of the public sphere, whereas participation in eldercare was framed as being involved in and deciding about one’s context of care. The chance for people over retirement age to participate in daily activities was further reduced by a precedent from the Supreme Administrative Court in 2014 (No. 927-13). Referring to the government white paper, the court interpreted the meaning of the service as being aimed at people of working age, and only in exceptional cases under particular circumstances should people over the upper limit for retirement have the right to daily activities.¹ The complainant’s argument—that being deprived of daily activities was detrimental to his health and wellbeing, and that ‘the only thing that keeps him going is the activities, staff and friends’ at the activity centre—was not found to be such a circumstance.

As the government texts on the LSS focused on the non-old, the meaning of a normal life for older people with support needs was mostly spelled out in statements that justified age limits. This was the case when the reasons for excluding people over the age of 65 from the possibility of having personal assistance. The government bill stated that personal assistance should enable people with disabilities to live ‘an active life regardless of their impairments’ and that the service would ‘change character’ if it was possible to apply for personal assistance at any age (Prop. 2000/01:5 p. 10). If granted to individuals with needs that emerged after retirement age, personal assistance would take on ‘the character of being a compliment to healthcare and eldercare’, and hence people above retirement age should be assisted entirely within that help system.

In a study of group residence for people with intellectual disability, Kåhlin, Kjellberg, and Hagberg (2016) noted that the staff did not seem prepared to cope with demands for an active third-age lifestyle among residents of retirement age. Similarly, our analysis shows a complete absence from government texts and court decisions of the notion of a third age—the period after retirement associated with study, travel, voluntary work, leisure activities, and social involvement. What is evident, though, is a division of the life course which has childhood, youth, and adulthood under 65 years of age as the ‘active age’ (Jönson and Larsson 2009; Lövgren 2017), and although older people’s lifestyles and needs are not commented on directly, the introduction of two distinct help systems communicates that, as a category, people over 65 have less need to live an active life. This replicates the stereotypical divisions of the life course, which assigns activity and social participation to the broad category of the non-old, consisting of children, youth and adults of working age (Kohli 1987).

Similar living conditions

If people with disabilities under the age of 65 should compare their life circumstances to those of ‘others’ of the same age, who then should people over that age invoke as a comparison? Given that the LSS was meant for the non-old, government texts on the legislation do not provide direct information, but comments on the help context points towards a different type of comparison. Older people who acquire disabilities once over 65 are referred to the eldercare system, and in effect are expected to compare their life circumstances with those of other older people who receive help in the eldercare system. In stark contrast to the way reference groups have been used in disability policies, this suggested using a reference group internal to disability and care. Justice was a matter of having living conditions equal to those receiving eldercare.

Our review of court cases reveals several attempts to challenge this position by referring to external reference groups such as older people without disabilities. Comparisons were contested in the Administrative Court in Gothenburg (No. 10900–16), for example, when a 72-year-old man’s legal representatives argued that a reduction in the number of hours of companion service prevented him from living a normal life:

Today, 72 is no particularly great age, and there have been discussions about raising the retirement age to something in this region. Most who are 72 years of age live active lives with a great social life and he [the complainant] should not be discriminated against because of his handicap.

The local municipality that opposed the claim of the man cited the government texts on the LSS, according to which the comparison should be made with what is considered normal for other people of a similar age, but did not see pensioners in general as the relevant reference group. Instead, the municipality argued that the situation of older people with help needs should be the basis for comparison, since ‘The vast majority of people of the same age are referred to services under the Social Services Act.’ In its decision, the court did not see the need to comment on this particular issue, since his appeal was dismissed for other reasons.

The court cases we have studied contain references to ‘the main rule’, according to which LSS is primarily meant for children, young people, and adults of working age. In a typical case, a 65-year-old man was denied residence with special services under the LSS, with reference to the help he had under the Social Services Act, and the court stated: ‘It was weighed in that the man, given his age, should as a rule have his needs met under the Social Services Act’ (Administrative Court of Appeal in Sundsvall, 2011, 2010-377).

The only case we have found where an external reference to people of similar age was successful was a decision in the Administrative Court in Umeå in 2016 (No. 909–16). The case concerned a man in his seventies who had previously had a number of hours companion service under the LSS, but when he moved and entered residential care run by a different local authority he was denied this particular service. The court acknowledged that the LSS was primarily aimed at children, young people, and adults of working age, but it also addressed the issue of whether the needs of the complainant were being met. The court concluded that the man lacked stimulation (as the care facility itself acknowledged) and that ‘it could be regarded as normal for a person in his seventies to have the opportunity, apart from socializing with his children and grandchildren, to get out for a walk for example’. The local authority was ordered to grant companion services under the LSS. Although the complainant’s appeal was approved, however, the cluster of activities associated with normality for people in their seventies was remarkably similar to what is often demanded for residents in nursing home care.

The absence of comments on normality among older people without support needs leads to the conclusion that the period over the age of 65 is treated as a time when it is presumed normal to receive eldercare, and justice is having similar living conditions to others who receive such care. This presumes a completely different logic to the one used for people under retirement age.

Normal ageing starts at 65

The introduction of the LSS in 1994 was accompanied by a striking anomaly. While the cause of a disability should not determine the right to support according to the law, the LSS also stated that its services should not be used for disability caused by ageing. An individual could in some cases be entitled to LSS support for needs identified after the age of 65 as long as the need was ‘manifestly not due to normal ageing’ (1 §). Neither government texts nor court decisions justify this ‘exception’ to the rule of not considering causes beyond the ‘main rule’, according to which the LSS is meant for children, young people, and adults of working age. The exclusion of people from the disability system who have needs possibly caused by normal ageing could be regarded as an attempt to differ between membership of two support categories, but invites problematic reasoning on the meaning of ‘normal ageing’, as will be seen.

There was an attempt to define normal ageing in the government bill (Prop. 1992/93:159) that preceded the LSS, which described it as ‘a natural loss of function associated with ageing’ only present among older people. Referring to ‘common usage’, older was specified as being over 65. Conditions associated with normal ageing were said to be progressive, the examples given being cardiac diseases, and diseases linked with the muscular, skeletal, and nervous systems, with consequences that were different for younger and older people:

Other impairments can have a geriatric character and for instance be a worn-out hip or senile dementia in an older person, that is, diseases that are not entirely unexpected for an aged person, but regarded as a catastrophe if a younger person is affected.

The text constitutes an attempt to construct two different types of people—an ‘aged person’ and a ‘younger person’—and suggests a difference in the perception and experience of illness for the two categories.

Gerontologists have attempted to dissociate normal and pathological ageing (Rowe and Kahn 1987). Again, it is evident that established knowledge in the field of ageing studies has been completely absent from government texts on disability policy. Direct associations between the category of older people and geriatric illnesses or conditions have also been made in court cases: for example, in the argument by a local authority that it ‘could be regarded as normal for older people to be affected by different types of dementia’ (Administrative Court of Appeal in Jönköping, 2013, No. 2173-12). This type of comment indicates that a particular use of the terms ‘normal’ and ‘older people’ is being applied, given that dementia is statistically uncommon for people in their seventies, the age of the complainant in that case.

The LSS was the subject of a new government white paper in 2008 (SOU 2008:77) when the so-called LSS Committee published a comprehensive investigation. It questioned the reference to normal ageing for three reasons: it contradicted contemporary research; it resulted in demarcation problems in individual cases; and it went against the overarching goals of the LSS. The Committee stated that the type of reasoning on normal ageing that had been used in the 1992/93 government bill was not in line with the current language of research and official texts, which distinguishes between normal ageing and illness. This was the case with motor and sensory capacities, as well as specific diseases. The Committee referred to ‘modern research’, according to which dementia cannot be regarded part of normal ageing, and concluded that it was difficult to determine what was normal and what was pathological in the ageing process. A recent study had shown that few aged between 65 and 80 needed any assistance to get out of bed, dress, and shower, or eat. In addition to problems in determining the meaning of normal ageing in specific cases, the LSS Committee found it difficult to justify why a person with impairments caused by a traffic accident should receive support from another system than a person with brain damage caused by a stroke. This was described as a breach of the overarching goals of the LSS: ‘These are explicitly stated as applicable for men and women of all ages, regardless of the causes of disability’ (SOU 2008:77 p. 291).

Strangely, the conclusion that differences in provision for people of the same age constituted a breach of LSS goals was not developed into a discussion of who should be allowed to keep LSS services in old age, or even to a broader discussion of injustice between people of different ages. The Committee suggested revising the law to address the perceived anomalies:

We also propose the introduction of a general limit on the entire LSS category to being granted LSS services at the age of 65. This age limit should be applied to all three subcategories of the target population. The present formulation of ‘normal ageing’ for the third subcategory lacks scientific support and could be regarded as prejudiced towards older people. A chronological limit of 65 years of age is clearer and in line with the intentions of the LSS, which primarily targets people of working age, and with the way the law is generally applied. (p. 295)

The Committee feared that the current formulation left it open for ‘very large groups that could claim LSS services for example in cases of dementia, neurological problems, motor problems, and so on that occurred after the age of 65′ (p. 388). The suggestion to introduce an age limit of 65 for all new applications can be regarded as an attempt to disentangle the application of an age-based policy by retreating to the legislators’ main rule. This, according to the Committee, would be in line with the way the LSS was applied in practice. The Committee’s proposal was not implemented; it was decided to keep the possibility for some people over 65 to be part of the target population.

Two court decisions exist that specifically attempt to clarify the meaning of normal ageing. The first (Administrative Court of Appeal in Sundsvall, 2000-1229) concerns a woman diagnosed with Alzheimer’s at the age of 67. The local authority decided that she did not come under the target population of LSS, since she had received her diagnosis after the age of 65. The Administrative Court confirmed this decision, but the woman appealed to the Administrative Court of Appeal in Sundsvall and provided a new medical certificate from a medical expert at the Geriatric Centre at Umeå University Hospital. The court called for an expert statement from the Legal Council of the National Board of Health and Welfare (NBHW, Socialstyrelsen). This statement confirmed the medical expert’s position, and concluded that every year approximately 2.5 per cent of the population over 65 years of age is confirmed to have Alzheimer’s disease (AD). Historically, a difference was applied to onset before and after the age of 65, but today the internationally acknowledged position is that it is the same illness regardless of age of onset. Hereditary factors played a role in cases of early onset. Microscopically, neuritic plaque formation can be observed in AD, but not in normal ageing. To some extent, AD is pharmacologically affected by a medication (this was also documented in the woman’s medical records) that has no effect on normal ageing. AD is associated with a rapid cognitive decline and other symptoms that cannot be attributed to normal ageing. With reference to the medical certificate and records, the council concluded that the disability was ‘clearly not due to normal ageing’, and this also was the decision of the court.

The second decision from the same court came ten years later and concerned a man who had substantial impairments after a stroke at the age of 68 (Administrative Court of Appeal in Sundsvall, 2011, 2010–377). The court followed procedure by obtaining a medical certificate and a statement from NHBW. The medical certificate—from the Neurological Department at Lund University Hospital—stated that stroke is not ‘part of normal ageing’, but age is one of the risk factors for onset. With reference to this, and returning to the list of ‘expected’ illnesses mentioned in the government bill of 1992/93:159, the court decided that it had not been clarified that the man’s illness was ‘manifestly not due to normal ageing’.

The court cases illustrate the two different ways of deciding about the relation between disability and normal ageing. Both confirm the position expressed by the LSS committee in 2008 by stating that neither AD nor stroke were part of normal ageing. The first decision applied an absolute distinction, while the second introduced the possibility that ageing was a factor in the illness, based on a correlation that was actually present in the first case. The second decision was in line with the way the LSS paragraph is phrased, and this seems to be the way the law has been applied by local authorities. Above all, though, the two decisions reinforce the idea that ‘normal ageing’ starts at the age of 65. The statistical correlation with age was said to apply for people over the age of 65, despite the fact that AD and stroke also correlate with higher age in ages below 65. Ageing, to sum up legal discourse, is presumed to be a process that may influence people’s functional capacity after their 65^th birthdays. This is the time when people should expect illness and disability that would be unexpected among the non-old.

Freezing category membership

The Swedish system is thus based on a distinction between the two categories of ‘people with disabilities’ and ‘older people with support needs’. This division is upheld in legal discourse and institutionalized in law and in support services. What, then, of the obvious problem that this division invites? Age is a continuous variable, so in a system where 65 marks a border between two types of help and two types of services, people who grow old with disabilities present a challenge.

It is possible for people who fall into any of the three LSS subcategories to remain in the disability support system after the age of 65 and keep services provided under the law. The government texts that preceded the LSS provided both practical and person-centred arguments for this. One practical argument was that those in residential care ‘with special services for adults’ or living in ‘specially adapted housing’ according to the LSS should not have to move when they turn 65. It is also possible to discern a principle of personhood continuity that rests on the freezing of category membership. This logic was plain in the revision of the LSS in 2000, when it was decided that people who had been granted personal assistance before the age of 65 should be able to keep this service after that age. The government bill of 1992/93:159, citing the public purse, introduced an absolute age limit for personal assistance, but added that local authority social services should provide the same type of help under the Social Services Act: a better, assistance-like eldercare for people who lost the right to personal assistance under the LSS. Eight years later, the government concluded that this had not worked as intended. Under the circumstances, the government proposed that personal assistance already granted could be kept, but that further needs should be met by the provisions of the Social Services Act. The revision was manifestly an attempt to address the problem of how to define and support people with disability in their later years, and the proposed solution was to freeze category membership.

The possibility of keeping personal assistance added to the challenge presented by ageing people with the right to LSS services, for the reason that an increase in support that could be expected at some point in later life would be very costly if provided by personal assistants. The solution was to freeze the level of support at the age of 65, justified by the government bill (Prop. 2000/01:5) with reference to the difficulties in separating the original impairment from the ageing process:

It would raise substantial or even impossible demarcation problems for local authorities and the Social Insurance Agency [Försäkringskassan] to clarify if an increased need after 65 years of age has occurred due to normal ageing/age-related illness, or if the illness or injury that caused the original impairment has worsened. (p. 13)

According to the government, the presumption should be that all types of disabilities that occurred over the age of 65 were caused by normal ageing. This meant that all ‘disabilities’ of the type that meant inclusion in the LSS categories were defined as characteristics that had to occur before the age of 65, if not caused by an accident.

At present, the possibility of retaining personal assistance granted before the age of 65 is a major anomaly in the support system for older people. As a result, people with extensive support needs, are provided with different types of services depending on whether the need appeared before or after the age of 65.

Conclusion – are policies ageist?

If ageism is defined as prejudice or stereotypes and discrimination of older people (Iversen, Larsen, and Solem 2009), is it then correct or incorrect to conclude that the legal discourse on disability support services in Sweden is ageist? Is the category of older people stereotypically portrayed and excluded from services based on age? Is the process of ageing used to explain problems and challenges for people within the category?

As concerns the legislation, we would argue that the difference in treatment of non-old and old people with support needs constitutes a case of residual ageism—a type of indirect, relative deprivation (Runciman 1966) that occurs when society pays special attention to groups that are not old. The fact that older people receive fewer, less personalised and ambitious services, and have to pay fees could therefore be understood as an effect of the attempt to further improve living conditions for younger age categories in relation to a comparative reference group: non-old people without disabilities. When explaining why the legislator decided to introduce legislation explicitly providing a statutory defined higher standard for children and people in the working age compared to older people, the government bill (Prop. 1992/93:159) that introduced personal assistance simply stated that older people could not be granted this service because of the cost to the taxpayer, and the white paper of 2008 (SOU 2008:77) expressed fears that the possible right to LSS services for older people with needs that were not caused by normal ageing would open the way for large groups to demand such services. The inclusion of older people, constructed as people aged 65 and over, was perceived to be too costly, but once again it is important to note that the legislator (in the government bill) did not give a reason for this position beyond the main rule: the law is for children, young people, and adult of working age. Court decisions could be regarded as an effect of how the intention of the legislator is translated into cases that are not described in the law itself. When courts have decided that older people should have the right to LSS services – for instance by dissociating disability and normal ageing – it is clear that they have ‘failed’ to follow the intention of the legislator as it is expressed in the government bills that preceded the law.

When applying the type of analysis that has been developed in critical gerontology (Bodily 1994; Bytheway 1994, 2005), and that relates policies to concepts like categorization, normality, stereotypes and othering, it is relevant to conclude that the legal discourse of Sweden communicates ageist notions. The Swedish support system refers to a traditional division of the life-course and attempts to uphold difference between the two categories or ‘master statuses’ (Hughes 1945) as ‘people with or without disabilities’ and ‘older people’. This division has also affected the concept of needs. In a critical comment on the exclusion of older people from LSS services, Mattsson (2018) has argued that services should only be provided according to need, but our analysis demonstrates that the legal discourse constructs needs of non-old and old as being different. Members of the category of ‘older people’, aged 65 and over, are not regarded as being of an ‘active’ age. There is no sense that people might enter the third age (Laslett 1987) or even increase their social activities once they have retired. Attempts to separate normal ageing from disease and disability that have been crucial within anti-ageism (Rowe and Kahn 1987; Jönson and Larsson 2009) are only acknowledged in the 2008 white paper (SOU 2008:77). People above retirement age are regarded as being in the ‘realm of eldercare’, where illness and disability are to be expected as part of normal ageing, and hence it is reasonable to aim for similar living conditions as others with eldercare, and not other people of a similar age without help needs (Jönson and Harnett 2016). The logic of the system is that people over 65 are affected by the process of ageing, but are not perceived to have different ages—they all have the same age—whereas people below 65 have different ages, but are not affected by the process of ageing.

Does the othering of older people mirror devaluing attitudes among policy-makers or the public? Perhaps so, but our suggestion is that the construction of older people as a category with different needs primarily reflects attempts to justify an exclusion that was primarily about costs. A system that provides people in the fourth age – the age that is characterized by disability and dependence – with the most ambitious services were not regarded as affordable, even less so today. The solution was to base the legislation on the institutionalized tripartition of the life course.

Chronological age is, as noted by Mattsson (2018: 46), ‘an attractive and often-used tool in governmental practice’. Returning to Bytheway (1994), we would suggest that this is primarily the case when age categorization and age-limits are viewed with a general and stereotypical understanding of the life-course, where support needs during old age are viewed as the result of gradual decline over a long time. General ideas about the undisputed realities of old age as the last phase of the life course support policies that differentiate between the non-old and the old. Attempts to use a less peripheral gaze, for instance by attempting to decide when the period of old age begins or if a stroke at the age of 66 is part of the normal ageing process, invite arguments that challenge this division.

Final remarks – is there a potential for change?

Mainstream gerontology has for a long time tried to combat the idea that old age equals illness and disability and older people themselves are often reluctant to refer to themselves as persons with disabilities (Oldman 2002; Darling 2003; Jönson & Larsson 2009)? A Swedish action plan on ageing policies used, as noted by Erlandsson (2014) terms like “ailments” and “worries” to describe situations where individuals were not able to get dressed or visit the bathroom without help. The use of such terms has cast health problems as normal parts of ageing, but also supported a system that is unfavorable for older people with extensive support needs. Few people in the ages between 65-79 years of age have severe disabilities but as members of the category of “older people”, they are regarded as being in the realm of eldercare and support needs are cast as the outcome of normal ageing.

Coming back to the difference in self-perception and identities among old and non-old people with disabilities that has been described by Darling (2003) and others, we propose that new cohorts of older people may challenge the present separation of categories and identities. A growing number of people with disabilities are entering old age and this has prompted researchers to pose question on how to understand the experience of being old with a disability (Bickenbach et al. 2012; Larsson 2013; Jeppsson Grassman and Whitaker 2013). People who have been part of the disability movement, and who have used the type of strategies and identities that have been typical of this movement are now identifying as ‘older people with disabilities’. For instance, one of the founders of the Swedish independent living movement Adolf Ratzka who has previously emphasized the uniting experience of having a disability, has in recent years argued that the changed character of older people in general entails a need to grant personal assistance for people above the age of 65. When emphasizing the need for a reform, Ratzka (2014: 404) invoked a new type of comparative reference group:

Why should older people accept the house arrest of the nursing home or in the home with home care when their age peers who had their stroke before their 66^th birthday can live out in the city and continue their lives – almost like before – with the help of their personal assistants?

What the comparison reveals is an attempt to introduce older people who age with the type of supportive services that are enabled through LSS as a comparative reference group for older people who acquire a disability after the age of 65. Ratzka ironically referred to people who had a stroke before and after the age of 65 as lucky or unlucky in terms of the support they were entitled to. This rhetoric focuses on the years surrounding the age limit – a period typically described as the third age – and challenges the construction of two distinct categories as non-old and old.

Some people in their 70 s who would otherwise have lived in nursing homes are now living with personal assistance in their ordinary homes. Members of this small population challenge the idea that eldercare is the normal solution for older people with support needs. With support from LSS they engage in activities and lifestyles that are typical of the third age, far beyond what eldercare would offer; they travel, do research, participate in advanced leisure activities, help their grandchildren and visit friends (Larsson 2013; Larsson and Jönson 2018). Disability policies have referred to comparisons between people of similar ages with and without disabilities when defining the right to live like others. Is there a new ‘us’ to reckon with: older people with disabilities who aim for the right to live like others of the third age?

Acknowledgements

The authors wish to thank Tove Harnett and other members of the research groups ‘Social Studies in Ageing South’ for useful comments.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1 At time of the decision, the upper limit for retirement had been raised to 67.