Table Of ContentFrom the Department of Neurobiology, Care Sciences and Society
Karolinska Institutet, Stockholm, Sweden
Live life!
Young peoples’ experience of living with
personal assistance and social workers’
experiences of handling LSS assessments
from a Child perspective
Lill Hultman
Stockholm 2018
All previously published papers were reproduced with permission from the publisher.
Published by Karolinska Institutet.
Printed by Eprint AB 2018
© Lill Hultman, 2018
ISBN 978-91-7831-062-3
Live life!
Young peoples’ experience of living with
personal assistance and social workers’
experiences of handling LSS assessments
from a Child perspective
THESIS FOR DOCTORAL DEGREE (Ph.D.)
Defended on Thursday 24 May, 2018, at 1 PM, Magnus Huss Aula, Stockholms Sjukhem
By
Lill Hultman
Principal Supervisor: Opponent:
Professor Ulla Forinder Professor Berth Danermark
Gävle University Örebro University
Department of Social work and Psychology Department of Disability Science
Faculty of Health and Occupational studies Faculty Board of Health, Medicine and Care
Karolinska Institutet
Department of Neurobiology, Care Science and Examination Board :
Society Professor Elisabeth Olin
Division of Social Work Göteborg University
Department of Social Work
Co-supervisor(s) :
Docent Pernilla Pergert Docent Ingrid Hylander
Karolinska Institutet Karolinska Institutet
Department of Women’s and Children’s Health Department of Neurobiology, Care Science and
Childhood Cancer Research Unit Society
Division of Family Medicine and Primary Care
Professor Kerstin Fugl -Meyer
Karolinska Institutet Professor Rafael Lindqvist
Department of Neurobiology, Care Science and Uppsala University
Society Department of Sociology
Division of Social Work
Stones taught me to fly
Love taught me to cry
So come on, courage, teach me to be shy
'Cause it's not hard to fall
And I don't wanna scare her
It's not hard to fall
And I don't wanna lose
It's not hard to grow
When you know that you just don't know
(Lyrics by Damien Rice)
To all of you who fight, love, try, fail, succeed, laugh and cry – Don’t give up!
ABSTRACT
The Act Concerning Support and Services to Persons with Certain Functional Impairments,
in which the provision of personal assistance (PA) is included, came into force in 1994. It
paved the way for strengthened rights for people with disabilities, in which the overall
intention was to give disabled people equal opportunities and enable full participation in
society.
This thesis explores adolescents’ and social workers’ perspectives on and experiences of
personal assistance. The overall aim of this research was to gain empirical knowledge and a
deeper understanding of young assistance users’ experiences of living with PA and the social
workers’ experience of assessing children’s right to PA and other LSS interventions. In
paper I, a grounded theory (GT) analysis showed that the adolescents’ main concern was to
achieve normality, which was about doing rather than being normal. The findings underline
and discuss the interconnectedness between the different enabling strategies adopted by the
adolescents, and to a lesser extent discuss disabling barriers for which PA cannot compensate.
In paper II the adolescents describe their experiences of the assessment process which
precedes possible access to PA. The content analysis reveals that the adolescents’
participation was determined by the structure of the meetings, in which the assessments tools
played a decisive part. The adolescents adapted their behaviour in response. Paper III is based
on a phenomenological approach to social workers’ responses to children and young peoples’
ability to participate in meetings and decision making concerning their own support
interventions. It reveals difficulties in grasping what participation should be and result in. In
paper IV, a GT study, the emerging theory explains how case workers tried to maintain their
professional integrity by adopting various strategies.
The synthesis of the four studies has resulted in a clarification of how the individual,
organizational and societal levels interact through legislation and policy documents, meetings
and norms to create certain processes and interactions between the different stakeholders.
However, further research is necessary to explore the long-term effects of the current changes
to Swedish LSS-legislation regarding both the professional conduct of the case workers
responsible for assessing LSS interventions and the consequences of such decisions for
assistance users and their families.
Keywords: Personal assistance, children with disabilities, social workers, LSS legislation,
discretion, decision making, assessment, participation, norms, professionalism
LIST OF SCIENTIFIC PAPERS
The thesis is based on the following papers, which are referred to in the text by their Roman
numerals.
I. Hultman, L., Forinder, U., and Pergert, P. (2016) Assisted normality : a
grounded theory of adolescent’s experience of living with personal assistance.
Disability and Rehabilitation, vol. 38, no.11, 1053 -1062.
II. Hultman, L., Pergert, P., and Fo rinder, U. (2017) Reluctant Participation : the
experiences of adolescents with disabilities of meetings with social workers
regarding their right to receive personal assistance. European Journal of
Social Work, no. 4; 509-521.
III. Hultman, L., Öhrvall, A-M., Pergert, P., Fugl -Meyer, K., and Forinder, U.
Elusive participation : Social workers’ experience of disabled children’s
participation in LSS assessments. Submitted .
IV. Hultman, L., Forinder, U., Fugl -Meyer, K and Pergert, P. Maintaining
professional integrity: Experiences of case workers performing the
assessments that determine children’s access to personal assistance. Accepted
for publication in Disability & Society .
CONTENTS
INTRODUCTION .................................................................................................................. 9
Outline .......................................................................................................................... 10
Conceptual clarification.............................................................................................. 10
BACKGROUND AND PREVIOUS RESEARCH ............................................................ 13
Swedish disability policy and the development of personal assistance ................. 13
The emergence of the welfare state .............................................................................. 13
The impact of the Normalization principle in Scandinavia ......................................... 14
Gaining access to personal assistance in Sweden ........................................................ 17
Development of personal assistance in the Scandinavian countries ............................ 19
Previous research on personal assistance ................................................................. 20
Adult experiences of personal assistance ............................................................................ 20
Children and adolescents with personal assistance ............................................................. 23
Study rationale ................................................................................................................... 26
Overall aim ......................................................................................................................... 27
THEORETICAL FRAME ................................................................................................... 28
Normality, norms and normalization ....................................................................... 28
Norms ............................................................................................................................ 28
Normalization ................................................................................................................ 29
The critique of Social Role Valorization ...................................................................... 29
Crip theory and performativity ..................................................................................... 30
Social justice and the welfare state ............................................................................ 31
Global austerity and New Public Management ............................................................ 32
Discretion ....................................................................................................................... 32
Discretion and Professionalism ..................................................................................... 33
Moral distress and emotional labour ............................................................................. 35
Ethical values, norms and power .................................................................................. 36
Children's participation ............................................................................................. 37
Children's participation from a rights perspective ........................................................ 37
METHODS ........................................................................................................................... 39
Ontology and epistomology ........................................................................................ 39
Design ............................................................................................................................ 39
Sampling and participants ......................................................................................... 41
Paper I ............................................................................................................................ 41
Paper II ........................................................................................................................... 41
Paper III ......................................................................................................................... 41
Paper IV ......................................................................................................................... 42
Data collection .............................................................................................................. 43
Study I, Paper I and II ................................................................................................... 43
Study II, Paper III and IV .............................................................................................. 44
Analysis ......................................................................................................................... 45
Paper I ............................................................................................................................ 45
Paper II .......................................................................................................................... 46
Paper III ......................................................................................................................... 46
Paper IV ......................................................................................................................... 46
Ethical considerations ................................................................................................. 47
Ethical awareness in relation to research with young people ...................................... 48
Validity and generalizability ...................................................................................... 49
Problematizing my research position ........................................................................... 50
Reflections about the research process ......................................................................... 51
SUMMARY OF THE ARTICLES ...................................................................................... 53
Assisted Normality (I) ................................................................................................. 53
Reluctant Participation (II) ........................................................................................ 54
Elusive Participation (III) .......................................................................................... 55
Maintaining Professional integrity (IV) ................................................................... 56
OVERALL ANALYSIS AND DISCUSSION ................................................................... 58
Normality as a guiding principle ............................................................................... 58
Access to normality by displaying disability ................................................................ 58
Discretion and reproduction of disability ..................................................................... 59
Social Work and Social justice .................................................................................. 61
The need for redistribution and recognition ................................................................. 61
Restricted participation ................................................................................................. 61
Paradoxical spaces in social work ................................................................................ 62
The distributive dilemma .............................................................................................. 63
Professionalism in social work .................................................................................... 65
IMPLICATIONS FOR PRACTICE .................................................................................... 66
CONCLUDING REMARKS AND REFLECTIONS ........................................................ 68
SVENSK SAMMANFATTNING ....................................................................................... 72
ACKNOWLEDGEMENTS ................................................................................................. 78
REFERENCES ..................................................................................................................... 81
APPENDIX I
APPENDIX II
APPENDIX III
APPENDIX IV
APPENDIX V
APPENDIX VI
ARTICLES
ABBREVIATIONS
ACC Alternative Augumentative Communication
BO Barnombudsmannen [Children’s Ombudsman]
CRC Convention on the Rights of the Child
CRPD Convention on the Rights of People with Disabilities
FUB För Utvecklingsstörda Barn, ungdomar och vuxna
[The Swedish National Association for Persons with
Intellectual Disabilities]
GT Grounded Theory
ICF International Classification of Health
IL Independent Living
LSS Lag om Stöd och Service till vissa funktionshindrade
[Support and services for people with certain functional
impairments]
NPM New Public Management
PA Personal assistance
PIMD Profound Intellectual Multifunctional Disabilities
RBU Rörelsehindrade Barn och Ungdomar
[Children and adolescents with mobility
Impairments]
STIL Stockholm Independent Living
SIA Social Insurance Agency
SRV Social Role Valorization
WHO World Health Organization
