Do personal assistance activities promote participation for persons with disabilities in Sweden?

Abstract

Purpose: To examine how the right to participation according to Article 19 of the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD) is promoted by personal assistance use in Sweden across age, gender and eligible person categories.

Method: Register data and data from a questionnaire were used (N = 15,289). Principal component analysis was performed and the internal consistency was tested. Descriptive statistics (χ² test) were used across age, gender and eligible person categories and components.

Results: An uneven distribution of personal assistance across the components Health and Care; Home, Leisure and Social Interaction; and Daily Occupation was found. Significant differences in personal assistance reported were found between children and adults, men and women and between the three eligible person categories.

Conclusions: The discrepancy between reported and expected outcome of personal assistance indicates that Article 19 of the UNCRPD has not been met. The unequal access to participation across age, gender and eligible person categories would seem to further signify that the Act concerning Support and Service for Persons with Certain Functional Impairments is promoting activities of a caring nature rather than fulfilling Article 19 of the UNCRPD, i.e. ensuring full participation in society.

IMPLICATIONS FOR REHABILITATION

• Government assistance allowance were granted for predominantly health and care, i.e. basic needs presenting risk of undermining the intention of participation in society.

• Men reported more personal assistance use for activities promoting participation than women.

• The discrepancy found between reported and expected outcome of personal assistance underlines the importance of service providers and administrative officials being sensitive to policy intentions.

• There is a need of guidelines for service providers and administrative officials to promote disability rights of participation for persons eligible for personal assistance.

Keywords:

• Disability rights
• independent living
• social insurance
• social policy
• UNCRPD

Introduction

The United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD) [1] is the youngest of the core conventions on human rights, adopted by the United Nations General Assembly in 2006 and ratified by Sweden in 2008. The purpose of the UNCRPD is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others,[2] such as taking part in social activities including mobility, employment, education and housing, thus express a social understanding of disability. The principle of independent living is expressed in Article 19 of the UNCRPD, which ensures equal rights to all persons with disabilities by providing full participation in the community. Article 19 states the right of personal assistance when regarded as necessary to facilitate and support living and inclusion in the community and to prevent isolation or segregation.[3]

The intention of the UNCRPD is reflected in the Swedish disability policy [4] and most strongly outlined in the Act from 1994 concerning Support and Service for Persons with Certain Functional Impairments,[5] the so-called LSS reform. The LSS Act, unique of its kind, was a ground-breaking role-model reform with a strong focus on the recognition of disability rights. According to the Act measures, i.e. personal assistance, should promote equal opportunities in life and full participation in society with the aim that the individual will be able to live like others. The government bill preceding the Act [6] specifically mentions that measures granted by the LSS Act should make it possible even for persons with severe disabilities to live independently, including being able to work. The goal of the reform was thus to empower persons with severe disabilities through the fulfillment of intentions for good living conditions. The reform covers a wide range of eligible groups with regard to age, impairment and diversity of needs. Out of the 10 measures covered in the Act, the most comprehensive is personal assistance. The hallmark of personal assistance is that the assistant helps out with activities that the user would have done her/himself, if it were not for her/his physical, mental or intellectual limitations. Service and support through a personal assistant has been described as the prime political tool for strengthening the participation and independence of persons with disabilities in Sweden by comprehensive rights and choices for the eligible.[7,8]

Swedish government agencies have repeatedly evaluated the implementation of the LSS Act in terms of cost, administrative procedures and number of recipients. The results indicate an incomplete and uneven implementation nationwide with risks of legal uncertainties as well as a substantial development of financial expenses, beyond the original expectations by the government.[9–13] These outcomes have in turn raised questions about the effectiveness of the LSS reform. In addition, a literature review showed that perceived quality of personal assistance corresponds to general indicators for health and social care, rather than promoting activities for participation.[14]

In spite of an awareness of the challenges facing the implementation of the Act, little attention has been given to how personal assistance fulfills the needs to promote participation in line with Article 19 of the UNCRPD. The International Committee on the Rights of Persons with Disabilities, monitoring the implementation of the UNCRPD, expressed great concern in its concluding observations on the initial report of Sweden.[15] The Committee found that the level of disaggregated data by gender, age and disability is insufficient and that it was vital to enhance capacity building and develop sensitive indicators in order to pursue the rights of the Convention. Extended knowledge of the outcome of the reform and an understanding of how measures by the LSS are perceived by its users is of significant importance in the implementation of disability rights. Consequently, it is essential to investigate to what extent the service and support provided by personal assistance according to the LSS Act constitutes sufficient conditions for participation in the community in accordance with Article 19 of the UNCRPD.

In this article “participation” is defined according to the International Classification of Functioning, Disability and Health, ICF, as “a person’s involvement in a life situation”, defined by the domains of domestic life, interpersonal interactions and relationships, major life areas and community, social and civic life.[16] A selection of the ICF life domains of participation was made in this study to reflect Article 19 of the UNCRPD, operationalized in the Swedish context by the policy goals set out in the LSS reform, i.e. full participation in society. Participation restrictions, according to the ICF, are defined as: “the discrepancy between observed and expected implementation”. In the study a personal assistance activity is defined as a person performing a task or action with the support of personal assistance thus eliminating limitations in function within specific life domains, as defined above.

The LSS Act, personal assistance and assistance allowance

Personal assistance can be granted to persons under the age of 65 years and there is no minimum age. Persons above the age of 65 years are eligible to retain the number of hours for personal assistance granted, but are not entitled to extend the support who belong to one of the following three eligible person categories: (i) persons with intellectual disabilities, autism or pervasive developmental disorders; (ii) persons with severe disability following brain damage in adulthood, caused by external violence or physical illness; and (iii) persons with other permanent physical or mental disability that is clearly not due to normal aging, causing significant difficulty in daily life and hence providing an extensive need for support and service.[6] The first and second categories are based on specified main diagnoses and were merged into the LSS reform due to previous legislation on persons with intellectual disabilities. A third category was added to the reform, inspired by the independent living movement and assessed solely on the extent of special needs, thus covering a wide spectrum of diagnoses and conditions.[17] Eligible persons of personal assistance are placed in a category according to his or her main diagnosis, alternative assessment of special needs. The categories are thus not mutually exclusive as to the presence and extent of multiple disabilities.[18] The person categories will henceforth be referred to as (i) intellectual disability; (ii) physical disability and (iii) special needs. According to the LSS Act, personal assistance should be carried out with respect for privacy and autonomy, and the individual should also have her or his own influence on and involvement in planning and performing activities, in order to attain good living conditions. Personal assistance should be coordinated and tailored to the user’s individual needs and designed so that it is easily accessible to those who need it and thereby strengthens the ability to live an independent life. However, services and support according to the LSS Act should be given only if the individual requests it.[6]

Service and support by personal assistance is provided under the LSS Act for basic needs and additional needs.[19] There are five basic needs defined by the Act, which are assistance with personal hygiene, meals, getting dressed and undressed, communication, and other assistance that requires specific knowledge of the person with the disability. Medical attention and constant supervision have by precedential adjudgement in practice come to represent the basic need that require specific knowledge of the person.[20] Additional needs, as expressed in the LSS Act, may, for example be “to be able to work”, “to study” or “to pursue leisure time activities”.[20] The scope and content of “additional needs” do not have a clear demarcation in the LSS Act, but are expressed in relation to a set of policy intentions.¹ The individual user has the right to choose and employ assistants. There is, however, no condition placed on the users’ ability to manage or control the assistance provided, in spite of no minimum age to receive personal assistance. The range of persons eligible for personal assistance includes all ages, and covered a span of 1–80 years of age in November of 2010.

Personal assistance for basic needs that does not exceed 20 h/week is funded by the municipality. Assistance allowance is a government subvention for the costs of hours exceeding 20 h/week of basic needs. Personal assistance is thus administered both by the municipalities and the Swedish Social Insurance Agency (SSIA).

To sum up, the LSS Act is considered to be the strongest expression of Swedish policy towards enhanced participation and involvement for persons with disabilities. Government evaluations of the LSS Act have so far been limited to measuring number of recipients, administrative procedures and costs. The content and distribution of personal assistance received by eligible persons have not been described earlier. Moreover, how personal assistance constitutes preconditions for participation in accordance with Article 19 of the UNCRPD needs to be further elaborated.

The purpose of this study was to explore how the right to participation according to Article 19 of the UNCRPD is promoted by personal assistance by examining the distribution of activities reported by persons granted government assistance allowance in Sweden across age, gender and eligible person categories.

Method

The data used in this article is SSIA register data on age, gender and eligible person categories and data from a questionnaire sent to all users of government assistance allowance by the SSIA.[18] The purpose was to collect information on how the implementation of personal assistance was perceived by the eligible persons receiving service and support within specific domains. The questionnaire was a unique initiative and is the only comprehensive survey including the whole population.

Population

According to SSIA register data, there were 15,289 persons entitled to personal assistance allowance in Sweden in 2010, of which 47% were women and 53% were men. On average, assistance allowance for basic and other needs was 112 h/week.[18]

The questionnaire was completed from November 2010 to February 2011. In total, there were 10,201 valid responses and corresponding to 67% of the population. Of the population, 69% of the women and 65% of the men responded. Of the respondents, 19% were children 0–19 years old. About 1.7% of the respondents were under the age of 7 years, i.e. preschool age in Sweden. Of adults, 64% were between 20–64 years, and 17% were persons older than 65 years. The category of eligible persons classified by intellectual disability corresponded to 36%, while the category classified by physical disability was considerably smaller and covered 5.6%. The category classified by special needs comprised the largest proportion of respondents, equivalent to 56%. Information on eligible person category was missing for the remaining 2.4%. Of the respondents, 75% had answered the questionnaire in part (42%) or completely with the help of another person (33%).[18] A non-respondent analysis showed that there were no significant differences in the population of non-respondents as compared with respondents [in terms of gender, age, eligible groups, etc.], except for a lower response rate among younger ages and from certain counties.[18]

Material

The questionnaire consisted of 41 questions, of which one question—“Do you receive assistance for …”—contained 22 items that outlined activities for which personal assistance can be granted assistance allowance.[20] In addition to the five basic needs defined by the LSS Act, the 22 items covered health, care, housework, leisure, social interaction, banking and daily occupation. The four possible response alternatives on the 22 items were: not relevant; no, but would wish; yes, sometimes; and yes, regularly.

The relevance and comprehensibility of the questionnaire was examined by a panel of users of personal assistance, recruited by the SSIA.[18] The panel consisted of eight persons representing different gender, age and levels of disability. The persons were individually interviewed about how they use assistance for activities. The result of the interviews was used as a base for developing the questionnaire. In a second step, the administrator officials of the SSIA and representatives from disability associations was allowed to give their comments on the questionnaire.

In order to facilitate filling in the questionnaire, three response formats were offered: a paper questionnaire, a web-based questionnaire and a telephone interview. It was also possible to answer the questionnaire with the help of or by a proxy respondent, i.e. a person who had personal detailed knowledge about the person receiving assistance allowance. A proxy respondent assisted in 75% of the cases.

Data

Variables used in the present study were items which constituted response alternatives to the question “Do you receive assistance for…” in the questionnaire, i.e. the 22 items outlining activities for which personal assistance can be granted. The answers were coded as “0” if the response was not relevant or no, but would like to have, “1” if yes, sometimes and “2” if yes, regularly.

The database used in this article included responses to the questionnaire. Items were merged with registry data from the SSIA: gender (men and women); year of birth, categorized as children (≤19 years) adults (>19 years) and eligible person categories (one, two and three), e.g. (i) persons with intellectual disabilities, autism or pervasive developmental disorders; (ii) persons with severe disability following brain damage in adulthood, caused by external violence or physical illness; and (iii) persons with other permanent physical or mental disability that is clearly not due to normal aging and causes significant difficulties in daily life and hence provides an extensive need for support and service.

Variable reduction

In order to reduce the dimensions of that part of the dataset comprising responses to 22 items describing activities for which personal assistance was received, principal component analysis was used yielding three components with internal consistency 0.88, 0.88 and 0.91. A principal component analysis with varimax-normalized rotation was conducted with 22 items retained. Four items attained a communality value <0.50, of which three were discarded and one item which attained 0.470 was retained. One item “Do you receive assistance to make purchases or run errands such as going to the post office or bank?” did not fit to any of the component. The item “Do you receive assistance for life support?” showed a co-variation with the items covering the component of occupational activities, which did not correspond to similar phenomena. A third item “Do you receive assistance with anything else that requires profound knowledge of you?” was found to have a low communality value 0.366. The three items were excluded from further analysis. Grade of homogeneity of the items within each of the three components was tested using Cronbach’s α. The item “Do you receive assistance in communicating with others?” was most strongly related to Component A, yet also related to Component C. Testing by Cronbach’s α showed that adding the item to Component C resulted in reduced internal consistency by 4.5%. Excluding the item from Component A, on the other hand, showed a small reduction of internal consistency, equivalent to 0.4%. From the test results of internal consistency, it is appropriate to assess the item addressing communication as part of Component A. To test for an internal structure, a principal component analysis with varimax rotation was conducted on the 19 items in the questionnaire that discussed needs for which personal assistance was perceived. The analysis yielded three Components A–C, where A and B comprised eight items each and C included three items, as shown in Table 1.

Table 1. Principal component analysis of items for which activities by personal assistance was reported, showing (n) by item.

		Components
Items	n	A	B	C
Do you receive assistance with your personal hygiene?	9673	0.821	0.308	0.093
Do you receive assistance with meals?	9908	0.795	0.297	0.125
Do you receive assistance with dressing and undressing?	9571	0.822	0.265	0.105
Do you receive assistance in communicating with others?	7426	0.470	0.282	0.423
Do you receive assistance with medication, suction of mucus, care of wounds, etc.?	8182	0.606	0.247	0.291
Do you receive assistance with supervision by someone who is always at hand?	8156	0.531	0.295	0.293
Do you receive assistance with moving indoors?	7900	0.659	0.213	0.257
Do you receive assistance with moving outdoors and with transport?	8978	0.708	0.272	0.180
Do you receive assistance with driving?	3619	0.172	0.585	0.490
Do you receive assistance with household chores, such as cleaning, laundry etc.?	8762	0.419	0.655	0.030
Do you receive assistance with repairs, washing the car, mowing the lawn, painting the house, etc.?	3374	0.171	0.620	0.455
Do you receive assistance to manage personal finances?	5974	0.242	0.686	0.250
Do you receive assistance to visit friends and relatives?	7086	0.407	0.678	0.185
Do you receive assistance with going downtown, having coffee, going shopping, etc.?	9062	0.436	0.690	0.094
Do you receive assistance with other hobbies?	8300	0.319	0.677	0.213
Do you receive assistance with family life?	6771	0.236	0.567	0.316
Do you receive assistance to work?	1604	0.168	0.275	0.806
Do you receive assistance to study?	1486	0.185	0.218	0.874
Do you receive assistance to play?	1876	0.229	0.137	0.862

Items by component is marked in bold.

Kaiser–Mayer–Olkin’s measure of sampling adequacy showed 0.945 and Bartlett’s test of sphericity was significant (p < 0.001). Total variance explained was 63.8%.

Component A (Health and Care) consists of eight items describing personal assistance for needs of basic health and care, including items for personal hygiene, medication and supervision. Explanation to the item “moving outdoors and with transport” loading into Component A may be the close interconnection to the item of moving indoors. Component B (Home, Leisure and Social Interaction) reflect assistance necessary in order to use own available social and economic assets and consists of eight items describing personal assistance for carrying out different household tasks, leisure time activities and socializing. Component C (Daily Occupation) consists of three items focusing on activities which relate to personal development within the person’s daily occupation i.e. work, study and play. The item “work” can include employment, subsidized employment or daily activities. The item “play” lacks a uniform definition and can be interpreted for several functions and purpose linked to personal development such as skills and language training, motor skills or for learning situations.

A high internal consistency reliability of Components A, B and C was found by using Cronbach’s α (Table 2).

Table 2. Internal consistency of Components A, B and C.

	Index	Cronbach’s α
A	Health and Care	0.88
B	Home, Leisure and Social Interaction	0.88
C	Daily Occupation	0.91

The three components identified were used in the analyzes of age, gender and eligible person categories, derived from SSIA registry data.

Data analyzes and statistics

Descriptive statistics were used to describe the basic features of the data. Non-parametric statistics (χ² test) were used to explore differences among age, gender and eligible person category and across the components Health and Care; Home, Leisure and Social Interaction; and Daily Occupation. The significance level was set at p < 0.05 (two-tailed). Based on the 0–2-point scale, the possible component scores were 0–16 for Health and Care, 0–16 for Home, Leisure and Social Interaction and 0–6 for Daily Occupation.

As described previously, variable reduction was performed using principal component analysis with varimax-normalized rotation, Kaiser–Mayer–Olkin’s measure of sampling adequacy and Bartlett’s test of sphericity. Internal consistency of components was tested by using Cronbach’s α. Statistical analysis was performed using SPSS statistical software.[21]

Ethical consideration

The Ethics Committee of the Swedish Social Insurance Agency approved the survey in 2010. A forthcoming follow-up has been approved by the Regional Ethical Review Board in Stockholm, Sweden (Doc. No. 2012/1822–31/5).

Results

The results showed an uneven distribution of mean values when components of received personal assistance were compared, as shown in Table 3. The eligible persons reported on average receiving nearly 13 out of 16 possible component scores on Health and Care and nearly 10 out of 16 possible component scores on Home, Leisure and Social Interaction, in contrast to less than 1 out of 6 possible component scores for Daily Occupation.

Table 3. Distribution of personal assistance by components for total population, showing mean (M) and standard deviation (SD) (N = 10,201).

	Total
Components	M (SD) (N = 10,201)
Health and Care	12.8 (3.63)
Home, Leisure and Social Interaction	9.8 (4.01)
Daily Occupation	1.0 (1.45)

Scales: Health and Care 0–16; Home, Leisure and Social Interaction 0–16; Daily Occupation 0–6.

Gender and age

Significant differences between females and males were found when Home, Leisure and Social interaction and Daily Occupation were compared. The result, presented in Table 4, showed that males reported receiving more personal assistance than females.

Table 4. Distribution of personal assistance by components for total population divided by gender, showing mean (M), standard deviation (SD) and p values (N = 10,201).

	Gender
	Females	Males
Components	M (SD) (n = 4891)	M (SD) (n = 5309)	p Values
Health and Care	12.8 (3.68)	12.8 (3.57)	NS
Home, Leisure and  Social Interaction	9.7 (3.97)	9.9 (4.04)	*
Daily Occupation	0.9 (1.39)	1.1 (1.49)	**

* p < 0.05.

** p < 0.001.

NS: not significant.

Scales: Health and Care 0–16; Home, Leisure and Social Interaction 0–16; Daily Occupation 0–6.

Divided by gender and age, significant gender differences remained only among adults (>19 years), where women reporting less personal assistance than men did for Home, Leisure and Social interaction and for Daily Occupation as shown in Table 5.

Table 5. Distribution of personal assistance by components for total population divided by adults showing mean (M), standard deviation (SD) and p values (n = 8610).

	Adult
	Women	Men
Components	M (SD) (n = 4283)	M (SD) (n = 4327)	p Values
Health and Care	12.7 (3.7)	12.8 (3.56)	NS
Home, Leisure and  Social Interaction	10.0 (3.83)	10.3 (3.91)	**
Daily Occupation	0.6 (1.81)	0.8 (1.32)	**

* p < 0.05.

** p < 0.001.

NS: not significant.

Scales: Health and Care 0–16; Home, Leisure and Social Interaction 0–16; Daily Occupation 0–6.

Divided by age, significant differences were shown for all components when children and adults were compared. Children reported more personal assistance for Health and Care and Daily Occupation than adults, as shown in Table 6. Adults, on the other hand, reported more activities for Home, Leisure and Social Interaction than children.

Table 6. Distribution of personal assistance by components for total population divided by age, showing mean (M), standard deviation (SD) and p values (N = 10,201).

	Age
	Adults	Children
Components	M (SD) (n = 8610)	M (SD) (n = 1590)	p Values
Health and Care	12.7 (3.62)	13.2 (3.65)	*
Home, Leisure and  Social Interaction	10.1 (3.87)	8.1 (4.23)	**
Daily Occupation	0.7 (1.26)	2.4 (1.43)	**

* p < 0.05.

** p < 0.001.

Scales: Health and Care 0–16; Home, Leisure and Social Interaction 0–16; Daily Occupation 0–6.

The results in Table 6 illustrate that the distribution across components differed with regard to age and revealed that with adulthood comes less personal assistance for Health and Care and for Daily Occupation but not for Home, Leisure and Social Interaction.

Gender across eligible person categories

When stratifying the results by eligible person categories, differences between genders in the categories classified by persons with intellectual disability and persons with special needs were found, see Table 7.

Table 7. Distribution of personal assistance by components for total population divided by gender and eligible persons categories1 showing mean (M), standard deviation (SD) and p values (N = 10,201).

		Gender
		Females	Males
Components	Eligible person categories^a	M (SD) (n = 4891)	M (SD) (n = 5309)	p Values
Health and Care	Intellectual disability	13.6 (3.59)	13.1 (3.67)	**
	Physical disability	13.1 (3.41)	13.5 (3.26)	NS
	Special needs	12.4 (3.64)	12.5 (3.52)	NS
Home, Leisure and Social Interaction	Intellectual disability	10.2 (4.07)	10.1 (4.12)	NS
	Physical disability	10.1 (3.50)	10.6 (3.72)	NS
	Special needs	9.4 (3.86)	9.7 (4.00)	*
Daily Occupation	Intellectual disability	1.8 (1.61)	1.9 (1.62)	*
	Physical disability	0.2 (0.00)	0.4 (0.91)	NS
	Special needs	0.5 (1.04)	0.6 (1.16)	**

* p < 0.05.

** p < 0.001.

NS: not significant.

Scales: Health and Care 0–16; Home, Leisure and Social Interaction 0–16; Daily Occupation 0–6.

^a First category of eligible persons classified by intellectual disability: persons with intellectual disabilities, autism or pervasive developmental disorders; second category of eligible persons classified by physical disability: persons with severe disability following brain damage in adulthood, caused by external violence or physical illness; third category of eligible persons classified by special needs: persons with other permanent physical or mental disability that is clearly not due to normal aging. The damage is large and causes significant difficulties in daily life and hence provides an extensive need for support and service.

There were significant differences between females and males in the category classified by intellectual disabilities, for Health and Care, where females reported more activities than males and for Daily Occupation, where males reported more than females. For the category classified by physical disability, females reported fewer activities than males for all components; however, the difference did not reach statistical significance. In the category classified by special needs, significant differences were found, where males reported more personal assistance than females for Home, Leisure and Social Interaction and Daily Occupation.

In summary, males in the person category classified by intellectual disability was equivalent to 36% of the respondents and person category classified by special needs was equivalent to 56% of the respondents, reported significantly more personal assistance than females on Daily Occupation. Males in the category classified by intellectual disability also reported significant more personal assistance than females on Home, Leisure and Social interaction. Females in the category classified by intellectual disability, on the other hand, reported significantly more personal assistance than males for Health and Care.

Differences between eligible person categories

Several statistically significant differences were found when eligible person categories were compared, as shown in Table 8. When comparing the categories classified by intellectual disability and physical disability, differences were found for Daily Occupation. Differences were found for all components when comparing the person categories classified by intellectual disability and special needs. Similarly, significant differences for all components between the person categories, classified by physical disability and special needs, were found.

Table 8. Distribution of personal assistance by components in between eligible person categories, showing mean (M), standard deviation (SD) and p values (N = 10,201).

	Eligible person categories^a			p Values
Components	Intellectual disability, n = 3366	Physical disability, n = 1358	Special needs, n = 4867	Intellectual/physical disability	Intellectual disability/special needs	Physical disability/special needs
Health and Care	13.3 (3.64)	13.3 (3.33)	12.5 (3.58)	NS	*	*
Home, Leisure and Social Interaction	10.1 (4.09)	10.4 (3.63)	9.5 (3.94)	NS	*	*
Daily Occupation	1.8 (1.62)	0.3 (0.83)	0.5 (1.1)	*	*	*

* p < 0.05.

** p < 0.001.

NS: not significant.

Scales: Health and Care 0–16; Home, Leisure and Social Interaction 0–16; Daily Occupation 0–6.

^a First category of eligible persons classified by intellectual disability: persons with intellectual disabilities, autism or pervasive developmental disorders; second category of eligible persons classified by physical disability: persons with severe disability following brain damage in adulthood, caused by external violence or physical illness; third category of eligible persons classified by special needs: persons with other permanent physical or mental disability that is clearly not due to normal aging. The damage is large and causes significant difficulties in daily life and hence provides an extensive need for support and service.

When the distribution of personal assistance was broken down by eligible person categories, the results revealed that persons belonging to the person category classified by special needs had a lower mean value for Health and Care and for Home, Leisure and Social Interaction. The mean value of persons belonging to the category classified by intellectual disability on Daily Occupation was higher than the other two categories, especially in comparison to persons belonging to the category classified by physical disability.

There were significant differences between persons in the person categories classified by intellectual disability and special needs for Health and Care and for Home, Leisure and Social Interaction, where persons in the category classified by intellectual disability reported more personal assistance. The results also yielded significant differences between the categories classified by physical disability and special needs, on Health and Care as well as on Home, Leisure and Social Interaction, where persons in the category classified by physical disability reported receiving more personal assistance. There were significant differences on reported personal assistance for Daily Occupation as well, where persons belonging to the categories classified by intellectual disability and special needs reported more personal assistance than persons belonging to the category classified by physical disability. There were also significant differences between persons belonging to the categories intellectual disability and special needs on activities of Daily Occupation, where persons in the category classified by intellectual disability reported more activities.

In conclusion, the results showed that persons in the category classified by special needs, reported receiving less personal assistance in all components in comparison to persons belonging to the categories classified by intellectual and physical disability. The only exception was for persons belonging to the category classified by physical disability, who reported less personal assistance in Daily Occupation than persons in the two other person categories.

Discussion

The results showed an uneven distribution of personal assistance across the components Health and Care; Home, Leisure and Social interaction; and Daily Occupation. Significant differences between children and adults and between men and women were also found, which could indicate unequal terms for participation. This, in addition to significant unexpected differences found between the three eligible person categories, gives reason to question if assistance allowance allows for equal conditions for participation for persons with disabilities. How the results relate to the intentions of the LSS Act and to Article 19 of the UNCRPD, regarding the fulfillment of disability rights, will be discussed further below.

Unequal access to participation across age, gender and eligible person categories

With regard to age, there were significant differences between children and adults, where children reported more personal assistance for Health and Care. An explanation may be that special health and care needs of children, considered to exceed normal parental responsibilities, could be granted assistance allowance. Significant differences between children and adults were also found for Home, Leisure and Social Interaction, where adults reported more activities than children. This component, including the items household activities and care of property, is typically adult responsibilities. The component may therefore not be appropriate to determine the child’s need for personal assistance. Significant differences were also found between children and adults in Daily Occupation, where children reported more activities. This may be explained by the component covering studies, schooling and play as could include leisure time. The, unlike adults, higher level of activity for children regarding Daily Occupation may be explained by the dual role of personal assistance as both relief for families and support for the individual user. As for children, studies show that the support of personal assistance by external and parental assistants works supplementary.[22,23] There is a tendency of external personal assistants being more encouraged to involve children in activities outside the home into broader social systems enhancing participation, while parental personal assistants tend to focus on activities requiring little planning and to the large part home-based. The results, which illustrate a low incidence of personal assistance supporting working life and Daily Occupation for adults, may indicate that support for building network within social systems and thus opportunities for participation in society declines with age.

The results revealed significant gender differences for adults on Home, Leisure and Social Interaction and on Daily Occupation, where men reported more personal assistance than women. Different conceptions regarding the needs of men and women, creating unequal status between genders, is a reasonable assumption to explain the results. According to the theory of social construction of gender,[24,25] a social process which creates a different status between men and women leads to unequal access to rights and responsibilities in society. Both feminist and disability research have examined women with disabilities exclusion from main societal arenas such as education, employment and participation, hence concluded major difficulties in comparison to men in gaining status as full citizens.[26–29] Thus, assessing needs of men and women for personal assistance may be affected and therefore stratified by the expectation of gender roles in the decision-making process of granting assistance allowance. Previous reports from the SSIA confirm gender differences and show that the proportions of males entering the assistance allowance are higher than for females. The reports testify significant difference between the genders, where males are granted more hours than women, a difference that arises already at the first decision made of granted hours of assistance allowance. Reasons could be that males are dominant in the category classified by intellectual disability, which has over time increased more than the other two categories. Another reason is that females, which are dominant in the category classified by special needs, have meanwhile decreased.[30]

Regarding the distribution of personal assistance between men and woman across the three personal categories (i) intellectual disability, (ii) physical disability and (iii) special needs, several significant differences were found. Women and girls belonging to the category classified by intellectual disabilities reported significantly more personal assistance for Health and Care than men and boys. The survey used for this study does not allow us to measure the extent of disability, which makes these results difficult to interpret. The results however, indicate that men and boys receive fewer activities defined as basic needs by the LSS Act, than women and girls in more than one-third of the studied population.

Significant gender differences were found for eligible person category classified by special needs, on Home, Leisure and Social Interaction, where men and boys reported more personal assistance than women and girls. Again, social construction in gender roles [24] may be a reasonable explanation for the results, in that men may be expected to be in need of more support in taking care of home and family.[24,31] Men in the categories classified by intellectual disability and special needs, reported significantly more personal assistance than women on Daily Occupation, covering 92% of the studied population. Unlike studies which demonstrate a decline in the status of the male breadwinner in welfare state societies.[32] other studies highlight a gendered distribution of resources among persons with disabilities, where women are more likely to be unemployed [31]. Findings from international studies show that the disabled man is associated with independence, activity and productivity, whereas the disabled woman is associated with being passive and unable to achieve participation and autonomy over her own life. The interplay between gender and disability makes the situation even harder for women with disability to execute their rights, while facing oppressive and discriminatory obstacles.[33,34]. Barron notes that by not paying attention to gender patterns, the LSS legislation, although gender neutral, can be indirectly discriminatory in its effects.[34] The interaction between gender and society that determines who is exposed or vulnerable and whose needs are acknowledged or dismissed [35] might thus, to an even greater extent be based on normative beliefs about men and women with disabilities than for others. In all, the results indicate that there are gendered distributions of personal assistance that disadvantage women’s rights for equal opportunity to participate in community life in comparison with men.

Comparing eligible person categories, the results show significant differences. Persons belonging to the categories classified by intellectual or physical disability reported significantly more personal assistance in Health and Care than the category classified by special needs. An explanation for the results may be the construction of the categories, i.e. categories classified by intellectual and physical disability are derived by diagnoses, while the category classified by special needs is derived by an assessment of daily living conditions. For the category classified by persons with intellectual disabilities, autism or pervasive developmental disorders, government reports [36] indicate that the group of persons belonging to this category are in extensive need of constant supervision for challenging behavior, an item found in the component Health and Care. The category classified by persons with severe disability following brain damage in adulthood, caused by external violence or physical illness, is the smallest group and characterized by extensive health and care needs. The results of this category may reflect the item of medical attention, also found in the component Health and Care. The phenomenon of medical attention and constant supervision in personal assistance indicates that personal assistance has progressed to performing service and support similar to that of health and nursing home care.[36] An explanation for the results could therefore be an unclear definition of what separates and defines personal assistance from other social and medical services. A contributing factor for the results is likely to be found in precedent-setting adjudgement, which according to recent studies has influenced the content of personal assistance over time to include more of a medical understanding of disability, i.e. health care services.[36,37] When comparing Home, Leisure and Social Interaction across person categories, categories classified by intellectual and physical disability report more personal assistance than the person category classified by special needs.

In all, the results demonstrate that the category classified by special needs, receives significantly less personal assistance than the other two categories, with the exception of the category classified by physical disability receiving less Daily Occupation. According to a study from SSIA, [36] the category classified by special needs covers a wide range of persons with regard to diagnoses, impairment and diversity of special needs. The absence of a clear definition of the boundaries of the persons eligible for this category makes it difficult to know if the results are unreasonable or not. The results indicate, however, that the persons belonging to the category classified by special needs may be either disadvantaged, or the support is given from elsewhere, or that persons belonging to this category are expected to be in need of personal assistance for participation in community life to a lesser degree than persons belonging to the other two categories, i.e. intellectual and physical disability.

Uneven distribution across components

According to the results, personal assistance is primarily provided for Health and Care. Personal assistance for Home, Leisure and Social Interaction was reported to a lesser degree while Daily Occupation yielded a negligible proportion. Given the policy implications of the LSS reform, described as the prime political tool for strengthening the citizenship of persons with disability,[8] the obvious dominance of Health and Care was not expected, nor the low occurrence of Daily Occupation.

One explanation may be that only persons with severe disabilities are considered for personal assistance, i.e. a care-intensive group. It stands to reason then that a considerable proportion of personal assistance would be provided for health and care. A second explanation could be that the needs of the individual, initially being reasons for granting personal assistance to support an active life, have changed over time due to progressive and thus more care-intensive health and impairment conditions. A recent report by the SSIA shows that the number of eligible persons of assistance allowance with disabilities associated with autism and developmental disorders, i.e. intellectual disability, has tripled throughout the period of the reform since 1994 and has increased the number of children. The category classified by special needs has since 2009 decreased, regarding persons under the age of 64 years old.[36] The shift of user profile granted assistance allowance may thus over time have migrated to an increasing proportion of health and care services. A third explanation could be that adjudgement of regional Administrative Courts, based on the LSS Act, has over time resulted in an applied law practice which mainly supports extended rights related to health and care. Brennan [37] reached the conclusion that a development by court rulings of eligibility criteria has shifted focus from the intentions of the LSS Act towards a medical understanding. Yet another explanation could be that basic needs in the LSS Act, represented by the component Health and Care, have by precedential adjudgement been possible to operationalize, measure and grant by the SSIA.[38] The LSS Act’s intention of participation, on the other hand, is harder to define and lacks demarcation by precedential adjudgement.[38,39] The lack of legal references may thus have undermined the emergence of institutional guidelines promoting activities for participation, supporting the decision-making process of granting government assistance allowance by the SSIA.

The deviation from the policy intention of the LSS Act can possibly be explained by the internal management process of the assistance allowance by the SSIA. Shortage and vagueness of institutional norms and guidelines for the decision-making process of granting assistance allowance may lead to local practices being established independently at SSIA offices nationwide. Recent government reports have highlighted the lack of guidelines for fulfilling the policy goals of the LSS Act.[38] Government reports have also highlighted insufficient support for the administrator officials to make assessments, for instance regarding communication and supervision, which are items belonging to the component Health and Care in the decision-making process.[12,36] The reports indicate that creation of practice at local SSIA offices has been influencing the decision making process in the absence of adequacy of central guidelines. The development of adjudgement of regional Administrative Courts has resulted in an applied law practice which differs from the intended Act. This development may, combined with local practices, have created norms which differ from the original intention of personal assistance. There is a margin of appreciation (discretion) when welfare legislation is applied.[40] Even if the LSS Act sets out rights to support and service, the decision-making process of granting assistance allowance gives the SSIA a high degree of discretion.[40] Adjudgement stating rights for health and care and the absence of legal references, i.e. precedential adjudgement, in how to interpret the intentions and goal of the LSS Act, may have shifted the implementation of the Act to emphasize health and care rather than participation.

New groups with greater needs for health and care may have emerged over time in the population eligible for assistance allowance, which could explain the uneven distribution of personal assistance across components. According to the SSIA, the population of persons eligible for assistance allowance has changed over time.[36] The person category classified by intellectual disability, has increased continuously since the LSS Act came into force in 1994. Meanwhile, the person category classified by special needs, has decreased.[36] It cannot be ruled out that precedential adjudgement supporting extended rights for constant supervision, an item included in the component Health and Care, may have contributed to a shift of users with extensive needs for nursing and health care.

Another aspect that may be contributing to the uneven distribution across components is an unclear demarcation between personal assistance and medical attention. The definition of self-care, which by the LSS Act does entitle a person to personal assistance, seems to differ between county councils. The needs of medical attention do not entitle a person to personal assistance. However, there are indications that medical attention has come to be performed by personal assistance providers due to an unclear distinction of what self-care consists of.[36] An explanation for the dominance of health and care found in this study could be that county councils, responsible for the medical assessment which is mandatory in the decision-making process of granting government assistance allowance,[19] are transferring the responsibility of medical attention to the personal assistants.

Policy implications

Article 19 of the UNCRPD, operationalized by the Swedish LSS Act,[5] is recognizing disability rights by stating that measures should promote equal terms and full participation in society with the aim that the individual will be able to live like others to achieve good living conditions i.e. to live independently to the greatest possible extent.[6] The distribution of the components indicates, however, that the implementation of the LSS Act seems to have drifted from the intentions of empowerment by promoting participation, to instead being composed in the main of activities of a caring and nursing nature. In particular, there are reasons to raise concern for the low incidence of activities reported for Daily Occupation, aimed at strengthening the base for independent living primarily through studies and work.

Based on the policy intentions set out in the LSS reform, achieving participation on equal terms through personal assistance, the significant differences across age, gender and eligible person categories indicate insufficient preconditions for equal access to participation.

Methodological limitations

The empirical material is based on a questionnaire answered by persons who were granted assistance allowance for personal assistance. The material does not allow us to measure efficiency or satisfaction of personal assistance reported. Although the material has its limitations, the distribution of components between user groups shows significant differences across age, gender and eligible person categories.

A majority had answered the questionnaire in-part or completely with the help of another person, which constitutes a risk that the answers do not fully represent the view of the person granted government assistance allowance. However, this is inevitable in surveys directed at groups where part of the respondents has a limited ability to communicate without the assistance of another person. There are few other options to capture such a large heterogeneous population as a person’s eligibility for government assistance allowance. Since the question did not include elements of assessment, such as quality of the assistance performed, subjective experience of participation or other form of personal views in relation to the activities, the proxy respondents were expected to be less sensitive to bias.

The construction of the questionnaire was based on a panel of persons eligible for personal assistance. Although the population of persons eligible for personal assistance is very heterogeneous, it cannot be excluded that another panel would have concluded other items.

Completed questionnaires corresponded to 67% of the population. Despite a large proportion of non-respondents, the results are based on 10,201 responses, which must be considered a large group and as thus valuable and useful. A non-respondent analysis showed that these persons in most respects did not differ considerably from those responding, except for a lower response rate among younger ages.

Future research

The uneven distribution of the three components and the significant differences found across age, gender and eligible person categories give cause for further study of the implementation of the LSS reform. According to the LSS Act, measures should promote equal opportunities in life and full participation in society with the aim that the individual will be able to live like others. The results, indicating that the intentions of the LSS reform to enhance participation by personal assistance cannot be considered to have been met, give reason to further study policy implications of the Act. In particular it is of interest to study how personal assistance supports equality in experienced living conditions for persons granted assistance allowance to be able to live like others which, as participation, is expressed as the goal of the LSS Act. The result highlights the importance of identifying key factors in the implementation to explain the observed transformation of the LSS reform from a citizenship-oriented rhetoric and politics to a more medical model. Further on, there is need to supplement the results of this study with interviews of persons eligible to government assistance allowance to explore the subjective experience of personal assistance in relation to the intentions of the LSS Act.

Conclusions

The results revealed a discrepancy between reported and expected outcome of personal assistance in relation to the LSS Act. Even if the persons eligible for government assistance allowance are the recipients of the main target of welfare compliance for persons with disabilities in Sweden, the results testify that the ambition of the LSS Act regarding the implementation of government assistance allowance has not been met. The implications of unequal access on participation across age, gender and eligible person categories, as well as the uneven distribution between the three components Health and Care; Home, Leisure and Social Interaction; and Daily Occupation, further signifies that the LSS Act is promoting activities of a caring nature rather than fulfilling the policy intention of full participation in the community. In all, the results indicate a move of the LSS reform from a citizenship oriented political ambition towards a medical model, a shift which presents a grave risk of undermining the intention of enhancing participation on equal terms. As a consequence, Swedish disability policy is facing major challenges in providing the realization of disability rights as expressed by Article 19 of the UNCRPD.

Acknowledgements

The authors wish to express gratitude to the persons who completed the questionnaire. We would also like to thank Professor Edward Palmer for generous comments on the first draft.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Note

Notes

1 Policy intentions in the LSS Act are developed in the sections of Operational Objectives and Overall Direction, and in the Right to Action, outlined in Chapter 2, paragraphs 5–8 (Ministry of Health and Social Affairs, 1993) and are aimed at promoting equal opportunities in life and full participation in society with the purpose of providing conditions to allow the individual to live like others on equal terms.