Choice and control : the right to independent living : experiences of persons with intellectual disabilities and persons with mental health problems in nine EU member states.
Date: 2013-02-13
Institutions: European Union Agency for Fundamental Rights
Subjects: comparative study, fundamental rights, independence of people with disabilities, integration of people with disabilities, mental health, mentally disabled person

Choice and control:  
the right to  
independent living

Experiences of persons with intellectual disabilities 
and persons with mental health problems 
in nine EU Member States

 
Foreword

Recent years have witnessed major developments in the European Union (EU) and internationally in the protection of 
the fundamental rights of persons with disabilities. The adoption of the United Nations Convention on the Rights of 
Persons with Disabilities (CRPD) in 2006 was a significant milestone in asserting the rights of persons with disabilities. 
The EU concluded the convention on 23 December 2010, making it the first international human rights treaty to which 
the EU has acceded. In addition, as of April 2012, all EU Member States had signed the treaty and 20 had ratified it, 
with more to come in the near future. These ratifications illustrate the Member States’ dedication to the rights‑based 
approach to disability, and are a clear sign that the EU and its Member States are committed to improving the lives 
of persons with disabilities.

The CRPD marks a paradigm shift from an understanding of disability as a medical condition to one that sees disability 
as the effect of an interaction between an individual’s impairment and the barriers society creates. Article 19 of the 
CRPD, which guarantees the right to live independently, throws the spotlight on this shift in perspective. It outlines the 
need to offer persons with disabilities choice and control over their living arrangements, access to services provided 
to the general public and, if needed, individualised support.

At the core of the CRPD are the concepts of self‑determination, participation and inclusion. These principles underpin 
the work of the European Union Agency for Fundamental Rights (FRA) on the fundamental rights of persons with 
mental health problems and persons with intellectual disabilities. This report, which is based on in‑depth interviews 
with persons with disabilities in nine EU Member States, presents a portion of this work. Those interviewed have 
spoken about their experiences and conditions of everyday life; their voices help us to understand what the right to 
live independently means in practice.

The right to live independently, this report shows, is a multifaceted concept encompassing more than policies on 
deinstitutionalisation alone. While these are of tremendous importance, for community living to be truly successful, 
deinstitutionalisation should be accompanied by a range of social policy reforms in areas of education, healthcare, 
employment, culture and, not least, support services. Only then will the rights enshrined in the CRPD become a reality 
for all persons with disabilities.

The report points to the need for a discussion of what making choice and control a reality for persons with disabilities will 
mean for EU Member States and provides some evidence on which to base such a discussion. The research brings 
to light the situation of two groups of individuals who have long suffered discrimination and social exclusion and 
whose fundamental rights situation demands urgent action. The findings are also relevant to the situation of all per‑
sons with disabilities. The report shows that protecting and fulfilling the rights of persons with disabilities is not just 
about putting in place the appropriate legal instruments and safeguards but also about ensuring that society itself is 
prepared to support the full and equal integration of persons with disabilities. This can only be achieved if persons 
with disabilities are given the opportunity to exercise choice and control over their daily lives.

Morten Kjaerum
Director

3

Contents

Foreword ��������������������������������������������������������������������������������������������������������������������������������������������������������������������������������3

exeCutive summary �������������������������������������������������������������������������������������������������������������������������������������������������������������7

BaCkground �������������������������������������������������������������������������������������������������������������������������������������������������������������������������13

aBout the report ���������������������������������������������������������������������������������������������������������������������������������������������������������������17

1� experienCes oF persons with intelleCtual disaBilities ��������������������������������������������������������������������������������������21

1.1. Living arrangements .......................................................................................................................................................21
1.2. Daily living .......................................................................................................................................................................25
1.3. Support for daily living ...................................................................................................................................................31
1.4. Participation in the community ...................................................................................................................................33
1.5. Barriers to inclusion and participation ........................................................................................................................35
Summary .................................................................................................................................................................................41

2� experienCes oF persons with mental health proBlems ����������������������������������������������������������������������������������� 43

2.1. Living arrangements ..................................................................................................................................................... 43
2.2. Daily living ......................................................................................................................................................................46
2.3. Support for daily living ................................................................................................................................................. 52
2.4. Participation in the community .................................................................................................................................. 56
2.5. Barriers to inclusion and participation ....................................................................................................................... 57
Summary ................................................................................................................................................................................ 63

ConClusions ������������������������������������������������������������������������������������������������������������������������������������������������������������������������ 67

BiBliography �����������������������������������������������������������������������������������������������������������������������������������������������������������������������71

annex 1: sample Composition at national level ���������������������������������������������������������������������������������������������������� 75

annex 2: methodology ���������������������������������������������������������������������������������������������������������������������������������������������������� 77

annex 3: external researCh team memBers �������������������������������������������������������������������������������������������������������������81

55

executive summary

Background
The chance to grow up with one’s family, to live where 
and with whom (as adults) one chooses, to participate in 
the life of one’s local community and to make one’s own 
life choices are opportunities which most of humanity 
takes for granted. The importance of this chance is 
recognised by the United Nations (UN) Convention on 
the Rights of Persons with Disabilities (CRPD), of which 
Article 19 sets out a right to live independently and be 
included in the community recognising that disability 
results  from  the  interaction  between  persons  with 
impairments and attitudinal and environmental barriers 
that  hinder  their  full  and  effective  participation  in 
society on an equal basis with others.

The  CRPD  adopted  by  the  UN  General  Assembly  in 
December 2006 is the most wide‑reaching and compre‑
hensive international instrument in the area of disability 
rights. It was drafted with an unprecedented degree of 
civil society involvement, in particular from organisa‑
tions representing persons with disabilities. The con‑
vention provides a unique frame of reference through 
which  to  evaluate  the  present  situation  of  persons 
with disabilities, as well as tools to measure progress 
in enabling them to live independently and participate 
in community life on an equal basis with others.

For a person with disabilities the right to independent 
living  entails  more  than  deinstitutionalisation  and 
support options. While these are essential for an indi‑
vidual’s self‑determination, other issues are equally 
important. For persons to have choice and control over 
their lives they should be, for example: allowed to vote 
in elections and stand for public office; facilitated to 
work through reasonable adjustments in the workplace; 
and allowed to enter legally binding contracts. Finally, 
they should not be unduly deprived of their liberty by 
administrative means. These activities empower an 
individual to exercise the choice and control which is 
essential for living independently.

This report outlines the findings of interview‑based 
research carried out in 2010 and 2011 in nine EU Mem‑
ber States with persons with mental health problems 
and persons with intellectual disabilities. The research 
examined how they experience the principles of auton‑
omy, inclusion and participation in their day‑to‑day 
lives.  The  report  also  provides  some  examples  of 
promising practices.

The qualitative research generated a wealth of infor‑
mation about experiences in different parts of the EU, 
giving a platform to those individuals whose voices are 

seldom heard. The nature of this type of research does 
not allow for a sample large enough to be statistically 
representative of the total population of persons with 
mental health problems or persons with intellectual dis‑
abilities. Although the experiences outlined here cannot 
be taken to represent the situation across the EU as 
a whole, they can illuminate and explain how the lives 
of individuals are affected by laws and policies, or by 
the lack of them.

methodology

The  fieldwork  research  was  carried  out  between 
November 2010 and July 2011 in Bulgaria, France, Ger‑
many, Greece, Hungary, Latvia, Romania, Sweden and 
the United Kingdom. One‑to‑one and focus group inter‑
views with a limited number of persons with mental 
health  problems  and  persons  with  intellectual  dis‑
abilities allowed for an in‑depth understanding of the 
issues. Photographs taken by respondents and with 
their informed consent are included in Annex 2. The 
research also held focus group interviews with stake‑
holders with expertise and experience relating to per‑
sons with mental health problems and with persons 
with intellectual disabilities in each of the nine coun‑
tries. Stakeholders represented organisations or bodies 
working in the field, for example user‑led organisa‑
tions or groups, government departments, ombudsman 
offices or national human rights institutions and profes‑
sional bodies, such as psychiatrists and social workers. 
At a peer review meeting, organisations and groups 
representing persons with mental health problems and 
persons with intellectual disabilities from the countries 
covered by the fieldwork discussed the initial findings of 
the research. The results do not claim to be representa‑
tive of all persons with intellectual disabilities or mental 
health problems, but they do provide a rich insight into 
the issues and problems those with such disabilities face 
in everyday life across several EU countries.

the situation of persons with 
intellectual disabilities
The research shows that opportunities and support for 
people with intellectual disabilities to live indepen‑
dently vary. According to the respondents, barriers 
and systems – whether in the form of long‑term care 
institutions, institutional regimes, lack of daily living 
support, inaccessible workplaces and services, stig‑
matisation and discrimination or restrictions on legal 
capacity – act to exclude them from the mainstream of 
community life. The interviews highlight the obstacles 

77

Choice and control: the right to independent living

which impede people with intellectual disabilities from 
living independently and participating in community 
life, but they also offer examples of good practice. 
Indeed, respondents’ characterisation of the transition 
to independent living as an on‑going process which, 
however, remains far from realisation is a consistent 
theme of this research. Respondents describe their lives 
as restricted by a general lack of power and opportu‑
nity, but they say that as power and opportunity are 
gradually transferred to them they undergo a form of 
liberation. Many are caught between these two states.

Respondents spoke of a lack of choice and control over 
where and with whom to live and attributed this mainly 
to two factors. First, limited alternative housing and sup‑
port options restrict the number of available and suit‑
able living arrangements in the community. In a number 
of countries respondents said that this reduces their 
choices to either living with their parents and relatives 
or moving into large social care institutions. Second, 
many people with intellectual disabilities do not have 
the financial resources needed to live independently. 
Respondents in this research expressed a desire for 
a ‘place of their own’ but frequently had insufficient 
income to rent or buy their own accommodation.

The  research  also  shows  that  outside  the  home 
autonomy and inclusion are similarly circumscribed. 
According to research respondents, employment in the 
open labour market is out of reach for many because: 
segregated education makes the transition from edu‑
cation to employment particularly difficult; employers 
fail to make reasonable adjustments; and of discrimina‑
tion on the grounds of disability. These barriers leave 
people with intellectual disabilities with little prospect 
of getting a job, although work is a way to overcome 
boredom and isolation, secure inclusion in community 
life and gain independence. In the absence of employ‑
ment, alternative daily activities, such as day centres, 
become even more important, for they offer a way to 
spend time away from residential accommodation, pro‑
vide structure, build relationships and access support 
services. Respondents argued that such activities are, 
however, frequently segregated from mainstream com‑
munity life and often do not satisfy individual needs or 
interests. Furthermore, the ‘risk‑avoidance’ practices of 
care takers and family members often hinder choice and 
control over cultural and leisure activities.

In terms of personal life, forming intimate relationships 
and establishing a family are often subject to significant 
restrictions. Parents frequently play a particular role 
in sanctioning relationships; an issue that respondents 
indicated can be a source of conflict between individuals 
and their families. Respondents argued that administra‑
tive burdens, such as those arising, for instance from 
disputes on ordinary residence, can also limit the ability 

to maintain intimate relationships by preventing people 
from moving from one local authority area to another 
in order to live together.

For  many  people  with  intellectual  disabilities 
independent living requires support in their daily lives. 
According to research respondents, personal assistants, 
freely chosen by the person with intellectual disabilities 
themselves, can promote autonomy and inclusion by 
helping to develop daily living skills, facilitating par‑
ticipation in community and cultural life, dealing with 
financial matters and opening up access to goods and 
services. Similarly, personal budgets and direct pay‑
ments can empower people by giving them control over 
who to employ and what services and support they 
provide. If their assistants simply perform such tasks 
and decide on their behalf, people with intellectual 
disabilities will not be able to build up the knowledge 
and daily skills for an independent adult life and their 
dependence will increase.

Another  crucial  aspect  of  independent  living  is  the 
ability to participate in public and political life, in terms 
of exercising the right to vote or through involvement in 
self‑advocacy organisations. Many people with intellec‑
tual disabilities are legally deprived of the right to vote, 
while others lack awareness of political events and find 
the political process inaccessible. The self‑advocacy 
movement helps to counteract this political isolation 
by conveying the concerns of people with intellectual 
disabilities to public authorities, and by advocating for 
their views to be heard in policy and decision making. 
Self‑advocacy and peer support organisations can also 
provide wider services that help to empower people 
with intellectual disabilities, including training, rights 
awareness and support to access justice in cases of 
poor or unfair treatment.

While  the  absence  of  choice  and  control  in  living 
arrangements, daily activities and support services 
are pervasive obstacles to independent living, research 
respondents also mentioned specific barriers impeding 
autonomy and inclusion, such as restrictions on legal 
capacity. Such restrictions can deprive people with 
intellectual disabilities of the ability to make decisions – 
both major and minor – about how they live their lives. 
Administrative barriers also curtail individuals’ scope 
to make choices about their lives through complex and 
changing rules and regulations that can alter eligibility 
for benefits and support services. Inaccessible infor‑
mation reduces their awareness of entitlements and 
administrative processes. Similarly, respondents men‑
tioned the need for legal systems to be adapted to the 
needs of people with intellectual disabilities to address 
difficulties in recourse to justice in cases of maltreat‑
ment, which can include lack of legal support and the 
fear of not being believed.

88

Executive summary

Less tangible or visible barriers also serve to undermine 
choice and control. According to respondents, despite 
progress towards deinstitutionalisation, institutional 
cultures often suffer from a lack of privacy, rigid daily 
routines and power inequalities between staff and 
patients. In the community, bullying, harassment and 
verbal and physical abuse are widespread, respond‑
ents say. Some professionals and parents, they add, 
have paternalistic attitudes and practices that increase 
dependency and impede participation. These negative 
attitudes and low expectations are based on the pre‑
sumption that people with intellectual disabilities lack 
the intrinsic capacity to exercise rights responsibly, to 
make choices for themselves and to live independently 
in the community.

Respondents  highlighted  how  financial  restrictions 
affect the daily lives of people with intellectual dis‑
abilities in complex and profound ways. The lack of 
employment opportunities means many people are 
reliant on benefits and other state support, which limits 
their ability to participate in a range of activities access‑
ing goods and services that are required for meaningful 
independent living. Participants also noted that, given 
the current economic climate, eligibility criteria for 
community‑based support are being tightened, which 
can have a detrimental impact on opportunities to live 
independently and be included in the community. Some 
respondents in this research expressed concern that 
as a result they may have no choice but to return to 
living in an institution. Austerity measures also affect 
self‑advocacy groups and other civil society‑led support 
measures, with many shutting down or scaling back 
their activities. Together, these developments could 
undo some of the positive results achieved in relation to 
integration and participation of people with intellectual 
disabilities on an equal basis with others.

the situation of persons with 
mental health problems
Again, the research shows that the extent to which 
people with mental health problems are able to live 
independently in the community varies considerably, 
reflecting the degree and various types of support 
available in different countries. For many respond‑
ents, barriers and processes – ranging from long, and 
sometimes involuntary, stays in psychiatric hospitals, 
restrictions of legal capacity and financial pressures to 
a lack of reasonable accommodations at work, insuf‑
ficient support services, and stigmatisation and dis‑
crimination – work to exclude them from community 
life. Respondents also speak, however, of promising 
practices that help people with mental health problems 
to exercise more choice and control over their lives. 
They describe being empowered by appropriate support 

and accommodative systems, while reflecting on the 
restrictions that continue to undermine their autonomy. 
Although considerable progress has been made in this 
area, much more remains to be done.

Choice and control over living arrangements is a key 
issue for people with mental health problems. In some 
countries, respondents said that many people live alone 
or with people they have chosen, giving them both 
control over their daily lives and a place of refuge. Two 
interrelated factors determine whether it is possible 
to live in this way. First, the availability of appropriate 
housing in the community and of support for independ‑
ent living; lack of these elements leaves little choice but 
to live with families or in group‑based accommodation 
with varying degrees of institutional culture. Second, 
the level of income and/or of state benefits restricts the 
choices available to rent or buy a home. Respondents 
also described the lack of choice over residence area 
given a reliance on subsidised housing. While none of 
the respondents interviewed lived in institutions at the 
time of the interviews, many expected that they would 
again spend time in psychiatric hospital in the future, 
and were concerned about the impact it would have 
on their ability to live independently in the long term.

According to respondents, people with mental health 
problems often have difficulties in finding employment 
both because of low levels of educational attainment – 
the  onset  of  mental  health  problems  often  occurs 
during late adolescence and affects post‑secondary 
education – and because of prevailing prejudice and 
an unwillingness to reasonably accommodate their 
needs. In the absence of opportunities on the open 
labour market, many seek – or are given – jobs in shel‑
tered workshops or with voluntary organisations. In the 
absence of proper paid work these activities offer social 
interaction, the feeling of contributing to society and 
a sense of purpose. Such sheltered workshops, how‑
ever, isolate people with mental health problems from 
community life thus reinforcing their stigmatisation and 
undermining their prospects of getting and maintaining 
paid work on the open labour market.

Respondents also spoke of difficulties they encounter 
when interacting with healthcare services and about 
insufficient or inappropriate community‑based mental 
health support. They argued that general practitioners 
frequently fail to take physical complaints seriously, 
assuming that they are related to their mental health. 
Similarly, treatment for physical illness can be restricted 
on the basis of mental health problems, while infor‑
mation about diagnosis, medication and potential side 
effects is often lacking. Where available, talking and 
other non‑medicinal therapies, as well as local centres 
offering flexible support and a variety of activities, 
are  highly  prized.  Respondents  stressed,  however, 

99

Choice and control: the right to independent living

the need to improve availability of and access to such 
services, and particularly the importance of ensuring 
that they reflect the ever‑changing nature of mental 
health problems.

People with mental health problems need access to 
a range of different forms of support, respondents 
said,  in  order  to  be  able  to  live  independently  and 
have genuine choice and control over their lives. In 
terms of formal support, for instance, assistance with 
the development of independent living skills can facil‑
itate the transition from institutional or family living 
arrangements to community‑based ones. In the com‑
munity, state‑funded advocates or agents who provide 
particular services such as support with finances are 
highly valued, while others can benefit from technical 
devices that can, for example, automatically check that 
household appliances are switched off before a per‑
son leaves the house, and from self‑developed tech‑
niques to avoid difficult tasks during periods of mental 
ill‑health. Informal support mechanisms also serve to 
facilitate autonomy and inclusion. Many respondents 
identified the discussion of issues and informal advice 
from family and friends, for instance, as key sources of 
support. They also stressed the importance of repre‑
sentative and user‑led organisations, which, alongside 
their peer‑support role, offer services and practical 
assistance with navigating different support options. 
Concern about the limited – and sometimes declining – 
availability of many support options emerges strongly 
as a theme of this research.

In some countries, respondents noted the valuable role 
representative organisations play both through peer 
support and by giving a voice to people with mental 
health problems in the shaping of service delivery and 
policy. In other countries, however, respondents say 
such  organisations  face  considerable  challenges  in 
terms of capacity or political support, leaving people 
with mental health problems isolated, unsupported 
and less able to influence the shape of policies affect‑
ing them. Strong networks of user‑led organisations 
can help to inform and empower people with mental 
health problems, giving them a means through which 
to articulate, and campaign for, their needs and to raise 
awareness of their rights.

Legal and societal barriers can also impede the choice 
and control people with mental health problems can 
exercise over their own lives. According to the respond‑
ents,  many  people  are  formally  deprived –  either 
totally or in part – of their legal capacity, potentially 
leaving them unable to sign contracts for employment 
or to take decisions about their property and finance. 
These choices are instead made by guardians whom 
they have often not selected themselves. This lack of 
decision‑making power is particularly acute in relation 

to the involuntary placement or treatment of people 
with mental health problems in psychiatric hospitals. 
Respondents also spoke of informal restrictions, for 
instance when families restrict choice and control by 
interfering excessively in their private lives. More‑
over, despite changes intended to make legal systems 
more accessible and responsive to people with mental 
health problems, many obstacles continue to affect 
access to justice. Lack of awareness of complaint or 
redress mechanisms, insufficient legal support and fear 
of stigmatisation can affect people’s decisions to lodge 
a formal complaint.

Societal  barriers  are  also  important.  Institutional 
regimes limit the choice and control not only of those 
in psychiatric hospitals and large social care homes, 
respondents say, but also of those in some smaller group 
homes where institutional cultures persist. Respondents 
recalling their time in institutions described them as 
characterised by regimented daily routines and a lack 
of privacy, and marked by unequal power relationships 
between staff and residents. In the community, stig‑
matisation and discrimination on the basis of mental 
health are common occurrences. Entrenched miscon‑
ceptions about people with mental health problems 
lead to abuse and bullying from the public, and can 
undermine personal relationships and interaction with 
service providers and medical professionals. This con‑
tributes to social isolation and reduced opportunities 
to participate in society. Fear of possible recriminations 
means that many do not disclose their mental health 
status to others, depriving them of the possibility to 
benefit from reasonable adjustments.

Finally,  economic  factors  operate  to  exclude  and 
marginalise people with mental health problems and 
deny them access to opportunities on an equal basis 
with others. Research respondents noted that many 
people, in the absence of paid employment, are reliant 
on benefits for all or most of their income. Such benefits 
are often not enough to allow people to make choices 
about where and with whom to live, to access support 
and to participate in activities that would enable greater 
inclusion in the community. Dependence on benefits 
exacerbates the stress brought on by repeated changes 
to the benefit system or to entitlement thresholds, as 
well as anxiousness associated with the need to prove 
the severity of mental health problems in order to renew 
one’s disability status. In addition, austerity measures 
taken in the context of the economic crisis often result 
in cuts in services and social security benefits, which 
risks holding back progress towards meaningful inde‑
pendent living.

1010

the way forward

The  gradual  transition  to  independent  living  as  an 
on‑going process is for people with disabilities a form of 
liberation as they gradually gain more control over their 
own lives and are able to make their own choices about 
how to live. The positive initiatives and testimonials 
presented in this report show the positive impact that 
innovative policies facilitating choice and control are 
already having on persons with disabilities. While pro‑
gress is being made a consistent theme of this research 
is, however, that there remains a long way to go before 
the rights enshrined in the CRPD become a reality. In this 
regard key initiatives in policy, law and practice, such 
as those listed below, can facilitate progress in help‑
ing persons with mental health problems and persons 
with intellectual disabilities to live more independently 
within the community.

 n Legal  and  administrative  measures  to  support 
decision  making  by  people  with  mental  health 
problems or intellectual disabilities.

 n Measures  to  ensure  that  adequate,  good  quality 
and  freely‑chosen  personalised  support  for  inde‑
pendent living is made available independently of 
the type of living arrangement.

 n Measures to ensure that support is available to the 
families  of  children  with  intellectual  disabilities  or 
mental health problems and to parents with intel‑
lectual disabilities or mental health problems to en‑
able them to look after their children.

 n Measures to enhance the financial independence of 
people with intellectual disabilities or mental health 
problems through social security and employment 
promotion programmes.

 n Measures  combating  discrimination  and  ensuring 
equal access to employment and key areas of social 
life, such as education, culture, leisure and the pro‑
vision of goods and services, including affirmative 
action to remedy existing inequalities.

Executive summary

 n Measures to develop appropriate community‑based 
living arrangements that give a meaningful choice 
over where to live, making appropriate use of the 
EU’s structural funds.

 n Measures  to  reduce  any  administrative  burdens 
associated  with  accessing  and  using  public  sup‑
port  services,  including  through  the  provision  of 
accessible  and  relevant  information,  particularly 
regarding entitlements.

 n Measures 

supporting 

the  development  of 
self‑advocacy  organisations  and  measures  to  in‑
crease the active participation and involvement in 
politics  and  in  policy,  in  programme  development 
and decision making by people with intellectual dis‑
abilities and people with mental health problems.

 n Measures  to  support  the  establishment  of  more 
community‑based  mental  health  centres  and  ser‑
vices for people with mental health problems.

 n Measures  to  ensure  the  political  participation  of 
persons with mental health problems or intellectual 
disabilities. The right to vote is a basic prerequisite 
for effective involvement in the political process.

 n Measures  to  raise  awareness  about  complaint 
mechanisms  and  to  support  people  with  men‑
tal  health  problems  and  people  with  intellectual 
disabilities  to  access  justice  and  participate  in 
judicial procedures.

1111

Background

Persons with intellectual disabilities and persons with 
mental health problems have for centuries suffered stig‑
matisation and discrimination. Isolated from mainstream 
society and kept away from public view, they lived in 
a variety of institutions, asylum facilities and psychiatric 
hospitals.1 Deinstitutionalisation as a policy goal started 
in Europe in the late 1960s and early 1970s2 and has been 
implemented at various speeds and in different ways.3

According to research over one million people live in 
institutions in Europe, including the EU and neighbour‑
ing countries.4 Persons with intellectual disabilities or 
with mental health problems feature disproportion‑
ately amongst them.5 Although precise statistics are 
not  available,  research  suggests  that  persons  with 
intellectual disabilities make up over a quarter of this 
population and persons with mental health problems 
are the next largest group.6

There  is  no  commonly  agreed  definition  of  an 
‘institution’, as the term is used in different ways across 
different countries. In the context of disability, the term 
‘institution’ is widely used to refer to forms of living 
arrangements which separate persons with disabilities 
from their families and local communities, and which 
do not permit them full choice and control over their 
day‑to‑day lives. The World Health Organization (WHO) 
provides the following definition of an ‘institution’:7

“Any place in which persons with disabilities, older people, 
or children live together away from their families. Implicitly, 
a place in which people do not exercise full control over their 
lives and their day‑to‑day activities. An institution is not 
defined merely by its size.”7

The  right  of  persons  with  disabilities  to  live 
independently and take decisions is not only affected 
by their stay in such institutions. It is also reflected in 
aspects of law and policy. One example, which has been 
a focus of the disability rights movement, is guardian‑
ship legislation. Legal definitions of ‘guardianship’ differ 
between countries but share a common denominator, 
namely  that  a  guardian  has  legal  authority  to  care 
for the personal and proprietary interests of another. 
Guardianship regimes are applied to minors and persons 
who are incapacitated, or to persons with a disability. 

1  Goffman, E. (1961).
2 

For more information, see Ericsson, K. and Mansell, J. (1996), 
and Mansell (2006).
For more information on deinstitutionalisation, see Fakhoury, 
W. and Priebe S. (2000), pp. 187–92.

3 

Under guardianship laws, individuals may be deprived 
of all or some of their legal capacity, for example their 
right to marry, vote, write a will, sign an employment 
contract or buy assets, such as a house.8 Another exam‑
ple is legislation on involuntary detention and psychiat‑
ric treatment of persons with mental health problems.

Independent living today is a holistic concept addressing 
several elements that enable persons with disabilities 
to be included in society on an equal basis with oth‑
ers. In this way, independent living has become “about 
disabled people having the same level of choice, control 
and freedom in their daily lives as any other person”.9

the united nations 
Convention on the rights 
of persons with disabilities

In December 2006, the UN General Assembly adopted 
the Convention on the Rights of Persons with Disabilities 
(CRPD), profoundly altering how international law views 
the rights of persons with disabilities. This convention, 
drafted with an unprecedented degree of involvement 
from civil society and, in particular, from organisations 
representing persons with disabilities,10 details the essen‑
tial building blocks for ensuring the respect, protection, 
promotion and fulfilment of the human rights of persons 
with disabilities. The CRPD does not create new rights, 
but rather takes existing rights and puts them into the 
disability context, detailing the steps that must be taken 
to make them practicable for persons with disabilities. It 
brings together civil and political rights with economic 
and social rights, creating a comprehensive framework 
built on different facets of human rights protection.

The CRPD, because of its clarity and detail about what 
human rights mean in the disability context, provides 
not only a unique frame of reference through which 
to evaluate the present situation of persons with dis‑
abilities, but also the tools to measure progress made 
in enabling them to live independently and participate 
in community life on an equal basis.

Article 19 of the CRPD entitled ‘living independently 
and being included in the community’ is of particular 
relevance to this research. It is the first provision in a UN 
human rights treaty to expressly articulate a right to be 

8  See: http://mdac.info/guardianship. See also Keys, M. (2009); 

4  Mansell et al. (2007).
5  Pfeiffer, J. et al. (2009) and Townsley, R. et al. (2010), 

and Bartlett, P. et al. (2007), Chapter 6.

9  UK Office for Disability Issues, Independent Living 

section 3.3.

6  Pfeiffer, J. et al. (2009).
7  WHO and World Bank (2011), p 305.

Strategy, available at: http://odi.dwp.gov.uk/odi‑projects/
independent‑living‑strategy.php.

10  Tromel, S. (2009).

1313

Choice and control: the right to independent living

furnished support in order to live independently and 
participate in community life.

Article 19 of the Convention on the 
Rights of Persons with Disabilities

Living  independently  and  being  included  in  the 
community

“States  Parties  to  this  Convention  recognize 
the  equal  right  of  all  persons  with  disabilities 
to  live  in  the  community,  with  choices  equal  to 
others,  and  shall  take  effective  and  appropriate 
measures to facilitate full enjoyment by persons 
with disabilities of this right and their full inclusion 
and participation in the community, including by 
ensuring that:

(a) Persons with disabilities have the opportunity 
to  choose  their  place  of  residence  and  where 
and with whom they live on an equal basis with 
others and are not obliged to live in a particular 
living arrangement;

(b) Persons with disabilities have access to a range 
of  in‑home,  residential  and  other  community 
support  services,  including  personal  assistance 
necessary  to  support  living  and  inclusion  in 
the  community,  and  to  prevent  isolation  or 
segregation from the community;

(c)  Community  services  and  facilities  for  the 
general population are available on an equal basis 
to persons with disabilities and are responsive to 
their needs.”

The convention does not define the scope of the term 
‘independently’. It can be argued, nevertheless, that 
the term is not used in the narrow sense of perform‑
ing tasks alone and unassisted. Instead, the CRPD links 
the notion of independence to choice and control over 
daily living arrangements rather than to unaided func‑
tional ability. When assistance is required it should 
be provided in a way that empowers a person to “to 
support living and inclusion in the community, and to 
prevent isolation or segregation from the community.” 
(Article 19 (b))

While Article 19 codifies the right to independent living, 
to be made meaningful in its fullest sense it must be 
read in conjunction with a number the convention’s 
other articles, because the concept of independent liv‑
ing brings together many aspects of an individual’s life, 
and thus requires the realisation of many other human 
rights. Article 5 of the CRPD, for instance, lays down the 
duty on States Parties to prohibit discrimination based 
on disability. Discrimination, as Article 2 of the CRPD 
makes clear, includes a failure to provide reasonable 
accommodation. ‘Reasonable accommodation’ is itself 
defined as a ‘necessary and appropriate’ modification 

or adjustment which is needed in a ‘particular case’ to 
ensure access for a person with disabilities to a particu‑
lar right or freedom ‘on an equal basis with others’ and 
which does not impose a ‘disproportionate or undue 
burden’. Discrimination thus includes both the notion 
of less favourable treatment on grounds of disability 
and the failure to provide reasonable accommodation.

The  need  for  the  provision  of  support  in  order  to 
facilitate independent living and community participa‑
tion also lies at the heart of Article 26. This requires 
States Parties to take “effective and appropriate meas‑
ures, including through peer support, to enable persons 
with disabilities to attain and maintain maximum inde‑
pendence, full physical, mental, social and vocational 
ability, and full inclusion and participation in all aspects 
of life”. These measures must include the provision of 
voluntary habilitation and rehabilitation services based 
on assessments of an individual’s needs and strengths 
and available as close as possible to the person’s own 
community, also in rural areas, supporting participation 
and inclusion in the community. In Article 26 (3), a spe‑
cific obligation is set out to promote “the availability, 
knowledge and use of assistive devices and technolo‑
gies” relating to habilitation and rehabilitation.

Article  12  supports  inclusion  and  participation  by 
recognising that persons with disabilities are ‘persons 
before the law’ and have legal capacity on an equal 
basis with others. Indeed paragraph 3 of this article 
assigns an explicit duty to States to “take appropriate 
measures to provide access by persons with disabili‑
ties to the support they may require in exercising their 
legal capacity”. In this way the convention facilitates 
a shift away from ‘substituted decision‑making’ towards 
more individually‑tailored systems of support, based on 
respect for the autonomy and dignity of the individual.

Article 28 of the CRPD on standard of living and social 
protection is also of relevance to independent living, in 
particular its references to the need to ensure access 
to  poverty  reduction  schemes and  assistance  with 
“disability‑related expenses, including adequate train‑
ing, counselling, [and] financial assistance […]”. Pov‑
erty is often closely linked to barriers faced in obtaining 
and retaining employment. In this regard it should be 
noted that Article 27 of the CRPD requires employers 
to prohibit discrimination on the grounds of disabil‑
ity. Article 27 also places a duty on States to improve 
employment opportunities for persons with disabili‑
ties, for instance by: employing them in public sector 
jobs; promoting their employment in the private sector 
through affirmative action policies and other incentives; 
employment retention and return‑to‑work policies; and 
self‑employment, entrepreneurship and co‑operatives.

1414

Background

Article 29 concerns participation in political and public 
life. It imposes obligations on States to ensure that per‑
sons with disabilities are able to participate, for example 
by voting and standing for and holding public office on 
an equal basis with others. It also imposes obligations 
on them to encourage the formation of representative 
organisations of persons with disabilities. Article 4 (3) 
requires States Parties to involve persons with disabili‑
ties and their representative organisations in relevant 
policy making processes.

Article 25 should also be noted: Paragraph (b) requires 
that the provision of healthcare services which are 
needed by persons with disabilities “specifically because 
of their disabilities” include services designed to “mini‑
mise or prevent further disabilities”. Paragraph (c) spec‑
ifies that such services should be made available “as 
close as possible to people’s own communities, includ‑
ing in rural areas”. In the context of mental health, the 
obligations imposed by Article 19 on independent liv‑
ing should also be seen in relation to Article 14 (1) (b), 
which demands scrutiny of the choices and opportuni‑
ties available to persons with mental health problems 
as regards their living conditions, stating that the “exist‑
ence of disability shall in no case justify a deprivation 
of liberty”.11 This could have important consequences 
for involuntary placement and treatment.

Finally, Article 8 of the CRPD imposes awareness‑raising 
obligations on States Parties requiring them to foster 
respect for the rights and dignity of persons with dis‑
abilities; to combat stereotypes and harmful practices; 
and to promote awareness of their capabilities and 
contributions. Specific reference is made to the need 
to raise such awareness through the education system 
and by encouraging the media to consider these issues 
when portraying persons with disabilities.

the european union and 
the Council of europe
The EU became party to the CRPD on 23 December 2010, 
making the CRPD the first international human rights 
treaty to be ratified by the EU. Inevitably, the EU’s acces‑
sion raises novel and challenging legal and political 
questions about the extent and nature of EU compe‑
tence in relation to the rights guaranteed by the con‑
vention.12 The EU itself has direct power to legislate in 
only a limited number of areas, such as discrimination, 
with the bulk of responsibility for implementing the 
CRPD lying with EU Member States. Nonetheless, the EU 
can play a crucial role in raising awareness and promot‑
ing Member State implementation of the convention, 

particularly by facilitating the sharing of experience, 
gathering data and identifying good practices.

Furthermore, requirements to respect and realise the 
fundamental rights of persons with disabilities exist 
at the heart of EU law: Article 10 of the Treaty on the 
Functioning of the EU (TFEU) requires the EU to com‑
bat discrimination based on disability when defin‑
ing and implementing its policies and activities; and 
Article 19 grants it the power to adopt legislation to 
combat discrimination on grounds of disability. The 
Equality Employment Directive13 prohibits direct and 
indirect discrimination, as well as harassment and any 
instruction to discriminate on grounds of disability, reli‑
gion and belief, age, and sexual orientation. It covers 
the fields of employment and occupation, vocational 
training and membership of employer and employee 
organisations. It sets out minimum requirements and 
Member States may provide for a higher level of pro‑
tection in national legislation. According to Article 5 of 
the directive employers are required to take appro‑
priate measures to enable persons with disabilities 
to access, participate in, or advance in employment, 
or to undergo training, unless such measures would 
impose a disproportionate burden on employers (‘rea‑
sonable accommodation’). 14

The Charter of Fundamental Rights of the European 
Union also contains specific provisions for the realisa‑
tion of the rights of persons with disabilities associated 
with  independent  living  and  community  participa‑
tion. The entry into force of the Charter as a legally 
binding instrument means that its requirements now 
apply  to  all  EU  institutions  and  also  to  EU  Member 
States  in  their  interpretation  and  application  of  EU 
law.15 Articles 21 and 26 are the two provisions of the 
Charter of direct relevance to persons with disabilities: 
Article 21 prohibits any discrimination on the ground 
of disability and Article 26 recognises the right of per‑
sons with disabilities: “[…] to benefit from measures 
designed  to  ensure  their  independence,  social  and 
occupational integration and participation in the life of 
the community.”

The key EU policy instrument in the area of disability is 
the European Disability Strategy 2010‑2020: A Renewed 
Commitment to a Barrier‑Free Europe, which was pub‑
lished by the European Commission in November 2010.16 
Its overall aim is “to empower people with disabilities 
so that they can enjoy their full rights, and benefit 
fully from participating in society and in the European 
economy”. The strategy follows the spirit of the CRPD.

13  Council Directive 2000/78/EC, OJ 2000 L 303.
14  For more information, see FRA (2011).
15  Charter for Fundamental Rights of the European Union, 

11  See, for instance, Minkowitz, T. (2010), pp. 151‑177.
12  European Council (2010), pp. 0011‑0015.

Art. 52.

16  European Commission (2010a).

1515

Choice and control: the right to independent living

The Council of Europe set out its overarching framework 
of disability policy in the 2006–2015 Disability Action 
Plan, adopted by the Committee of Ministers in 2006.17 
Although adopted some months prior to the finalisation 
of the CRPD, the text reflects the importance of inde‑
pendent living:18

“This action line focuses on enabling people with disabilities 
to live as independently as possible, empowering them to 
make choices on how and where they live. This requires 
strategic policies which support the move from institutional 
care to community‑based settings ranging from independent 
living arrangements to small group homes. Such policies 
should be flexible, covering programmes which enable 
persons with disabilities to live with their families and 
recognising the specific needs of individuals with disabilities 
requiring a high level of support.”18

For its part, the European Court of Human Rights (ECtHR) 
has issued a series of landmark rulings which refer to 
various aspects of independent living. Most notably, 
in the ruling Stanev v. Bulgaria,19 the ECtHR recognised 
that life in an institution can amount to a violation of the 
right to liberty. In doing so, the ECtHR took into account 
the institution’s distance and isolation from the com‑
munity, its regimented daily schedule, rules on leave of 
absence, lack of choice in everyday matters and the lack 
of opportunity to develop meaningful relationships.20

17  Council of Europe, Committee of Ministers (2006).
18  Ibid., Section 3.8.
19  European Court of Human Rights (ECtHR), Stanev v. Bulgaria, 

No. 36760/06, 17 January 2012.

20  For a detailed discussion of the relevant international 

instruments and an overview of the ECtHR case law, see the 
Council of Europe, Commissioner for Human Rights (2012b).

1616

about the report

This FRA report, informed by the CRPD and a human 
rights‑based approach to disability, focuses on issues 
of choice and control that persons with intellectual dis‑
abilities and persons with mental health problems face 
in their daily lives. The right to live independently epito‑
mises the social model of disability adopted by the CRPD 
highlighting the social, physical and attitudinal barriers 
that need to be removed to ensure the full participation 
of persons with disabilities in society.

The ability to live independently is not only a matter of 
available accommodation and support options. While 
these are essential for individuals’ self‑determination, 
the full participation of persons with disabilities entails 
choice and control over other issues, such as political 
participation through voting and standing for elections, 
the ability to enter legally binding contracts and not 
be unduly deprived of their liberty by administrative 
means. These are all very important dimensions that 
give an individual the choice and control required for 
meaningful independent living. These complex and mul‑
tifaceted issues are addressed in other reports devel‑
oped by the FRA in its work on disability. The reports 
examine the right to vote, protection from discrimina‑
tion and provision of reasonable accommodation, invol‑
untary placement and treatment and legal capacity.21

This  report  presents  the  findings  of  transnational 
qualitative  research  which  generated  a  wealth  of 
in‑depth information about important aspects of the 
lives of individuals whose voices are seldom heard. In 
order to collect such information the research relied on 
relatively small samples of respondents which are not 
representative of the total target population, namely 
persons  with  mental  health  problems  and  persons 
with intellectual disabilities, and focused on selected 
EU Member States. The findings outlined here cannot, 
therefore, be taken to represent the situation of all 
persons belonging to this target population in the EU.

Nevertheless, by providing a deeper understanding 
of the challenges facing these two groups of people, 
this research can usefully inform the EU in its efforts 
to improve the respect, protection and fulfilment of 
their rights as guaranteed by the CRPD, the Charter of 
Fundamental Rights of the European Union, as well as 
informing the development of EU and national legis‑
lation in accordance with the EU’s European Disability 
Strategy 2010‑2020.

21  European Union Agency for Fundamental Rights (FRA) (2010); 

FRA (2011); FRA (forthcoming)

methodology

Fieldwork research was carried out in nine EU Member 
States (Bulgaria, France, Germany, Greece, Hungary, 
Latvia,  Romania,  Sweden  and  the  United  Kingdom) 
between November 2010 and July 2011 through per‑
sonal and focus group interviews. The fieldwork was 
conducted in two parallel and distinct strands in order 
to respect the important differences between persons 
with mental health problems and persons with intel‑
lectual disabilities. This distinction is also reflected in 
the analysis of the data. The sample was made up of 
persons with relatively strong functional abilities who 
were selected to participate because they could articu‑
late their experiences relatively easily in an interview 
situation but did not include: persons living in institu‑
tions; under guardianship whose guardian refused con‑
sent to the interview; and, persons under the age of 
18, although adult respondents were asked about their 
childhood experiences.

The  fieldwork  was  carried  out  using  individual 
semi‑structured  interviews  and  focus  groups:  indi‑
vidual  interviews  were  held  with  115  persons  with 
mental health problems and 105 persons with intel‑
lectual disabilities. In each EU Member State at least 
two focus groups – one with respondents with mental 
health problems and the other with respondents with 
intellectual disabilities – discussed the emerging find‑
ings of the personal interviews. Additional focus group 
interviews were conducted in each EU Member State 
with selected stakeholders with relevant expertise and 
experience relating to persons with mental health prob‑
lems or with intellectual disabilities. Stakeholders were 
representatives of relevant organisations or bodies with 
an interest in the topics studied. The organisations rep‑
resented varied between Member States, but, wher‑
ever possible, included: a representative of a user‑led 
organisation or group, representatives of government 
departments, representatives of ombudsman offices or 
national human rights institutions, and representatives 
of relevant professional bodies, such as psychiatrists 
and social workers. At a two‑day peer review meet‑
ing in Vienna, organisations and groups representing 
persons with mental health problems and persons with 
intellectual disabilities from the EU Member States cov‑
ered by the research discussed the initial results of the 
fieldwork research.

The FRA administered the project and applied its own 
rigorous quality control measures including its Scien‑
tific Committee. Large part of the background research 
and the fieldwork was outsourced to the Human Euro‑
pean Consultancy, which formed a core research team 

1717

Choice and control: the right to independent living

composed of Neil Crowther, Edurne Garcia Iriarte, the 
National Institute for Intellectual Disability (Dublin), Anna 
Lawson (Leeds University), Oliver Lewis and Jasna Russo 
(Mental Disability Advocacy Centre), Rachel Stevens 
(NUI Galway) and Rannveig Traustadottir (University of 
Iceland). In addition, background studies and fieldwork 
research at the national level were conducted by national 
researchers; see Annex 3 for a full list. The research was 
supported by an ad hoc advisory board composed of the 
following civil society organisations: European Network 
of Independent Living (ENIL), the European Disability 
Forum (EDF), the European Network of (ex) Users and 
Survivors of Psychiatry (ENUSP), the European Platform 
of Self Advocates, and Inclusion Europe. In addition, 
the following experts kindly contributed to the work: 
Michael Bach (Canadian Association for Community Liv‑
ing), Mark Priestly (Leeds University), Gerard Quinn (NUI 
Galway), and Lisa Waddington (Maastricht University). 
The responsibility for the analysis and conclusions lies 
with the EU Agency for Fundamental Rights.

terminology and structure 
of the report
The preamble to the CRPD acknowledges that disability 
is  an  ‘evolving’  concept:  “Persons  with  disabilities 
include those who have long‑term physical, mental, 
intellectual or sensory impairments which in interac‑
tion with various barriers may hinder their full and 
effective  participation  in  society  on  an  equal  basis 
with others.”22 There are no commonly agreed terms 
to describe the two groups of persons covered by this 
report. The terminology varies between jurisdictions, 
professions and persons with disabilities themselves as 
well as across geographical regions. During the period 
when this research was carried out, the terms used by 
international bodies changed. The Council of Europe 
Commissioner for Human Rights in his 200923 Viewpoint 
and 201024 Human Rights Comment, for instance, used 
the collective term ‘persons with mental disabilities’ to 
refer to ‘persons with mental health or intellectual dis‑
abilities’. In his later (2012) Human Rights Comment, he 
referred to “persons with intellectual and psycho‑social 
disabilities”. 25  On  the  other  hand,  the  European 

22  Art. 1 (2) of the CRPD.
23  Council of Europe, Commissioner for Human Rights 
(2009), Persons with mental disabilities should be 
assisted but not deprived of their individual human rights, 
Viewpoint, available at: www.coe.int/t/commissioner/
Viewpoints/090921_en.asp.

24  Council of Europe, Commissioner for Human Rights (2010), 

Inhuman treatment of persons with disabilities in institutions, 
Human Rights Comment, available at: http://commissioner.
cws.coe.int/tiki‑view_blog_post.php?postId=93.

25  Council of Europe, Commissioner for Human Rights (2012), 
Government leaders distort justice when they interfere in 
individual court cases, Human Rights Comment, available 
at: http://commissioner.cws.coe.int/tiki‑view_blog_post.
php?postId=207.

 Commission’s Pact for Mental Health and Well‑Being 
refers to ‘people with mental health problems’,26 while 
the European Commission’s Disability Strategy 2010‑
2020 applies the CRPD term ‘psycho‑social disabilities’ 
in place of ‘mental health problems’.27 Finally, the WHO’s 
World report on disability28 speaks of ‘people with men‑
tal health conditions’.

In the absence of a common terminology, and after 
consultation  with  disabled  persons’  organisations 
(DPOs), this FRA report refers to ‘persons with mental 
health problems’ and ‘persons with intellectual disabili‑
ties’. The term ‘persons with intellectual disabilities’ is 
used by Inclusion Europe, an association of persons 
with intellectual disabilities and their families,29 and 
the European Platform of Self‑Advocates,30 a network 
of persons with intellectual disabilities. In the United 
Kingdom, however, the preferred term is ‘persons with 
learning disabilities’.31 The term ‘persons with mental 
health problems’ was regarded as more accessible to 
lay persons and non‑fluent English speakers, although 
the term ‘psycho‑social disability’ is favoured by the 
World Network of Users and Survivors of Psychiatry,32 
the  International  Disability  Alliance,33  a  world‑wide 
disability NGO, and the UN Committee on the Rights 
of Persons with Disabilities.34 This term is not used by 
the European Network of (ex) Users and Survivors of 
Psychiatry (ENUSP).35 The reluctance of many people 
with psychiatric diagnoses to identify themselves as 
‘disabled’ has spurred a debate about the relationship 
between conceptions of mental health and disability 
and contributed to the decision to use the term ‘persons 
with mental health problems’ in this report.36

Intellectual disability and mental health problems are 
quite separate and distinct phenomena. They have gen‑
erated different political movements, are associated 
with different types of experience and response and 
often have quite different concerns. In this report, in 
order to avoid repetition, reference is made to ‘persons 
with disabilities’ in the spirit of the CRPD. This is not 
intended in any way to undervalue the important differ‑
ences between persons with intellectual disabilities and 
persons with mental health problems. The report also 
refers to ‘groups of persons’, although it is recognised 
that individual experiences vary greatly.

26  European Commission (2008c).
27  European Commission (2010a).
28  WHO and World Bank (2011).
29  See: www.inclusion‑europe.org/en/about‑us.
30  See: www.inclusion‑europe.org/en/self‑advocacy.
31  See: www.nhs.uk/Livewell/Childrenwithalearningdisability/

Pages/Whatislearningdisability.aspx.

32  See: www.wnusp.net/.
33  See: www.internationaldisabilityalliance.org/en.
34  United Nations Committee on the Rights of Persons with 

Disabilities (2011), para. 8.

35  See: www.enusp.org.
36  See, for example, Beresford, P. (2000), pp. 167‑172.

1818

About the report

The report reflecting these differences is divided into 
two main chapters presenting findings relating to per‑
sons with intellectual disabilities and findings relating 
to persons with mental health problems. Each chapter 
is divided into five main sections dealing with living 
arrangements, daily living, support options, partici‑
pation  in  the  community  and  barriers  to  inclusion 
and participation.

Choice of countries

The  fieldwork  research  was  carried  out  in  nine  EU 
Member States (Bulgaria, France, Germany, Greece, 
Hungary, Latvia, Romania, Sweden and the United King‑
dom) reflecting a range of geographical regions within 
the EU and a variety of disability and welfare policy 
regimes, as well as different approaches to deinstitu‑
tionalisation and guardianship. For instance, whereas 
in Sweden the deinstitutionalisation programme37 has 
replaced large residential institutions with group homes 
with no more than six residents, large‑scale residential 
institutions still exist in several EU Member States, such 
as Bulgaria, Hungary, Latvia and Romania. The provision 
of personal assistance schemes to support daily living 
also varies from minimal such provisions, for instance in 
Greece, to strong entitlements, for instance in Sweden. 
There is also considerable variation in the emphasis 
given to choice and control over budgets given to per‑
sons with disabilities to purchase support, also known 
as direct payments, with Germany and the United King‑
dom having comparatively strong measures in place.

37  Sweden, Law Concerning Support and Service for 

Certain Groups of Disabled People (Lag om stöd till visa 
funktionshindrade) (LSS, 1993) SFS 1993:387 and the 
Law Concerning Compensation for Assistance (Lag om 
assistansersättning) (LASS, 1993) SFS 1993:389.

1919

1�

experiences of persons with 
intellectual disabilities

This chapter explores some of the complexities people 
with intellectual disabilities experience in connection 
with living independently and being included in the 
mainstream community.

A total of 105 people with intellectual disabilities were 
interviewed (see Table 1.1 below). The highest propor‑
tion of respondents (64 out of 105) was between 26‑ 
and 45‑years old and the majority of the interviewees 
were men (58 v. 47 women). The largest proportion 
of interviewees came from Greece (20), followed by 
the United Kingdom (14), while the smallest proportion 
came from Hungary (9). In Bulgaria, France, Germany 
and Romania, ten respondents were interviewed. More 
details of the sample composition at national level can 
be found in Annex 1.

1�1�  living arrangements

All  research  respondents  lived  at  the  time  of  the 
interviews  in  the  community,  either:  alone  or  with 
a partner or friend; with their parents or other rela‑
tives; or they lived in group homes. Their experiences 
varied widely. A small number of respondents from 
some of the EU Member States owned their own homes. 
The respondents’ level of satisfaction with their living 
arrangements depended largely on their previous living 
conditions. People who had recently moved out of insti‑
tutions were pleased with the group homes they had 
moved into. Even if they had to share most of the facili‑
ties such as the bedrooms and day rooms with other 
people, the group homes were still a great improve‑
ment over the institutions. No respondents were living 

table 1�1: respondents with intellectual disabilities, by country, age and gender

Country

Number of 
interviewees

Men

Women

Age < 25

26‑45

46‑65

>66

Total Age < 25

26‑45

46‑65

>66

Total

BG

DE

EL

FR

HU

LV

RO

SE

UK

10

10

20

10

9

11

10

11

14

Total

105

Source: FRA, 2011

4

1

3

1

2

1

1

1

0

2

3

5

5

2

6

2

3

4

0

1

4

0

1

0

0

2

3

0

0

0

0

0

0

0

0

1

6

5

12

6

5

7

3

6

8

58

1

0

0

0

0

0

5

0

1

3

4

5

3

4

3

2

4

4

0

1

2

1

0

1

0

1

1

0

0

1

0

0

0

0

0

0

4

5

8

4

4

4

7

5

6

47

21

Choice and control: the right to independent living

in institutions at the time of the interviews but many 
had prior experiences of living in institutions as children 
and/or as adults.

living alone, with a partner 
or with a friend

Few research respondents lived alone or with a partner 
or  friend.  In  Bulgaria,  Greece,  Hungary,  Latvia  and 
Romania, for instance, none of the respondents lived 
alone. In France and the United Kingdom, in contrast, 
the majority lived on their own in rented flats. Over‑
all, respondents expressed a general desire for more 
autonomy over their living arrangements:

“[…] see, I want my own key and my own front door” 

Interviewer: “Could you decide where to live, where to get 
a flat […] if you got money?”

Man: “For the flat we had to meet together to see how we 
were going to do things, because we needed both guardians 
to get along together.”

Interviewer: “Did you organise a meeting with the 
guardians?”

Man: “Yes.”

Interviewer: “Did you do that to choose the flat?”

Man: “Yes. That’s right. To see how we could move forward 
together; who should do what.”

Interviewer: “Did you decide on the place yourselves?”

Man: “Yes […] with my girlfriend. After visiting it, we said: 
this is very good.”

(Man, 34, Latvia)

(Man, 31, France)

They wanted a system in which:

“[…] you can choose who you want to live with and who 
helps you.”

(Man, 39, Germany)

In Sweden, about half of the respondents lived on their 
own. The Swedish law on Special Support and Services 
for Persons with Disabilities (LSS)38 provides for the right 
to a place in a group home, an apartment with special 
services or another specially adapted apartment for 
individuals deemed to have large or persistent diffi‑
culties in managing daily life. In 2009, 83 % of indi‑
viduals entitled to services under the LSS were people 
with intellectual disabilities. Under this law, individuals 
secure property rights over accommodation with cer‑
tain conditions, including: the accommodation must be 
of a high quality, sufficiently removed from other such 
housing arrangements and without any restrictions on 
movement or association. A woman (32) respondent in 
Sweden shared her positive experience of the support 
and choice she had over a place to live: after living with 
her mother for several years, she moved to her own 
sheltered apartment, which she had chosen herself and 
where she was satisfied with the staff that helped her.

Three  of  the  French  respondents  who  lived 
independently found their flat with the help of their 
parents or their guardian:

38  Sweden, Law Concerning Support and Service for Certain 

Groups of Disabled People (LSS, 1993) (Lag om stöd till visa 
funktionshindrade) SFS 1993:387.

2222

In Romania, lack of private space and autonomy were 
issues raised in most interviews. None of the respond‑
ents had received any information about their entitle‑
ments to social housing; stakeholders stressed that 
community support services facilitating independent 
living are urgently needed.

living with parents or relatives

Parents and relatives are often a vital source of support 
for people with intellectual disabilities living outside 
institutions. Living with parents or relatives can, there‑
fore, be seen as a way of combining accommodation 
and personal support. Over half of the respondents 
in the study lived with parents or relatives, with as 
many as 17 out of 20 Greek respondents living in such 
arrangements.

“Currently I live with my grandmother, but I was staying with 
my mother, with my parents before. But then I moved to my 
grandma, because my mother was working at the police, 
in the identity department, so then they could not look after 
me anymore, because my mum was working, and my dad 
was working as well, so then I moved to my grandma.”

(Man, 37, Hungary)

Stakeholders in Greece stressed the important role of 
families in terms of the support and care they provide 
but  also  pointed  to  the  danger  of  family  members 
becoming overprotective:

“Parents think that people with intellectual disabilities are 
always children and do not let them take any initiative.”

(Stakeholder, Greece)

Financial considerations sometimes played a significant 
role in determining whether respondents lived with 
their families into adulthood:

“Well, my plan is to leave the ‘family nest’ at some point, but 
I do not really know when. I would like to have my very own 
life, separate from my parents […]. [A]t the moment I am 
thinking of renting a flat, but if I count my monthly income, 
I do not think I could afford it.”

(Woman, 30, Hungary)

Financial incentives for accommodating relatives with 
disabilities can also lead family members to try to pre‑
vent such persons from leaving home. Stakeholders 
in Latvia, for instance, argued that some families are 
preventing people with intellectual disabilities from 
leaving the family home because their social security 
benefits are regarded as a source of additional fam‑
ily  income.  The  government  representative  in  the 
stakeholder focus group in Latvia said that, since the 
start of the economic recession, families have shown 
greater interest in keeping relatives with disabilities at 
home, and waiting lists for places in long‑term social 
care institutions have shrunk considerably. In Greece, 
one of the stakeholders suggested that there may be 
a link between the financial incentive to keep children 
with disabilities within the family home and their loss 
of legal capacity, because families with children with 
disabilities receive disability pension only if the child is 
under guardianship.

living in group homes

Group homes are settings catering for a small group 
of persons that also provide on‑site assistance. While 
there is no commonly accepted definition of a group 
home, a European Commission funded study identified 
group homes as “typically 5‑6 people living together, 
though some examples may have up to 10 people resi‑
dent. In some situations these are provided for people 
with mild or moderate disabilities but in others they 
are provided for people with more severe disabilities 
or complex needs […]. Staff support varies from visiting 
or drop‑in support to 24‑hour cover, depending on the 
needs of residents.”39 These settings are referred to as 
‘protected homes’ in Bulgaria, ‘serviced apartments’ 
in Sweden, ‘group apartments’ in Latvia, ‘residential 
homes’ in Hungary, or ‘protected apartments’ in Greece.

While most persons with disabilities in Sweden live 
independently, some of those with specific support 
needs also live in group homes. In Latvia, in contrast, 
in 2009 there were only 12 group homes for people with 
intellectual disabilities or mental health problems, for 

39  Mansell, J., Knapp, M. et al. (2007) p. 9.

Experiences of persons with intellectual disabilities

a total of 168 residents.40 While Bulgaria is taking steps 
to make community structures available, NGOs report 
instances where group homes have been established 
within the old institutional settings. The Bulgarian Hel‑
sinki Committee reports that a number of ‘deinstitu‑
tionalised’ people were simply shifted to another area 
of the same institution.41

There were considerable differences in the numbers of 
respondents living in group homes. All but one of the 
respondents in Bulgaria and seven of eleven respondents 
in Latvia lived in such arrangements. In Hungary, Sweden 
and the United Kingdom, by contrast, only one respond‑
ent lived in a group home and, in France, none did.

Respondents pointed to the dichotomy between the 
protection and independence that group homes offer 
their residents. One man considered the protection 
offered by the group home as a safety net:

“It is nice here [in the group apartment], it is kind of safe, 
there is security, strangers cannot get in, in that way it is 
nice.”

(Man, 34, Latvia)

Others, instead, viewed this protective aspect as an 
unwelcome monitoring measure. A Swedish respond‑
ent who had moved to a group home from his par‑
ents’ at age 20 said the move had cost him his freedom 
and  the  possibility  to  assume  responsibility  for  his 
own activities:

“I got help with finding a service apartment but it only 
worked so‑so because they did not actually listen to how 
I wanted it to be. They tried to control me kind of. And that 
did not work. I did not agree to that. They came with a lot 
of stuff like they wanted to decide how and when we were 
going to do stuff and it kind of did not feel like I had any say 
in anything. And I felt like […] I was always left behind, never 
listened to, it felt like the other [person] who belonged in the 
service apartment always came[…] before me.”

(Man, 45, Sweden)

40  Latvia, Ministry of Welfare (2010) Public annual report 

of 2009 (LR Labklājības ministrija, 2009. gada publiskais 
pārskats), p. 28; available at: www.lm.gov.lv/upload/gada_ 
parskats/gada_parskats_09_2.pdf; Latvia, Ministry of 
Welfare (2010) Social services and social assistance in town/
region in 2009 (LR Labklājības ministrija, Sociālie pakalpojumi 
un sociālā palīdzība pilsētā/ novadā 2009. Gadā), available at: 
www.lm.gov.lv/text/1728.

41  Bulgarian Helsinki Committee (2009) Needs 

assessment of the structures involved in the process of 
deinstitutionalisation of the care of persons with severe 
mental diseases and mental disabilities, Monitoring report, 
August 2008‑August 2009, Sofia, available in Bulgarian at: 
www.bghelsinki.org/index.php?module=resources&lg=bg& 
id=0&cat_id=19#2009.

2323

Choice and control: the right to independent living

Another Swedish man had an ambivalent impression of 
group homes: on the one hand, he saw them in a posi‑
tive light:

“You never need to be alone.”

(Man, 33, Sweden)

on the other:

“The staff sometimes interfered in our privacy.”

(Man, 33, Sweden)

In a similar vein a Greek woman (52) commented on 
the institutional characteristics that can be found in 
a group home:

“No matter what it is called, for me it is an institution.”

(Woman, 52, Greece)

experiences in institutions42

All the countries covered by the research had embarked 
upon ‘deinstitutionalisation’ programmes, but the tran‑
sition to community living is at different stages and 
many people with intellectual disabilities still live in 
institutions. Sweden was one of the first countries in 
Europe to implement a deinstitutionalisation process, 
and currently has no institutions for people with intel‑
lectual disabilities. Countries such as Bulgaria, Hungary, 
Latvia and Romania still rely on institutional settings 
for the provision of care for people with disabilities.43

None of the research respondents lived in large social 
care institutions at the time of the interviews but many 
had lived in such institutions as children and/or adults, 
mostly in Bulgaria, Hungary and Latvia. A smaller num‑
ber of respondents in Germany, Greece and the United 
Kingdom also reflected on their childhood experiences 
of institutional life. Respondents said that living in insti‑
tutional settings left them with little, if any, control over 
their lives, for instance when they were transferred to 
other institutions:

“I was abandoned as a baby in the ‘Mother and child’ home 
[…]. Then at the age of two they moved me to the home 
for small children [...]. Then the director and teachers from 
another home came with cars to bring us to the village […] 
where we had to study first grade. But the director told me 
one day that I would be moved to another special school […] 
and they moved me there. After eighth grade I studied in 
the special boarding school for vocational training […]. Then 
I lived in a home for blind people […]. After that I was moved 
to a home for men with intellectual disabilities […]. I was in 
other homes in the meantime, too, as I did not have another 
place to live.”

(Man, 32, Bulgaria)

Even upon reaching adulthood, care takers and the 
institution’s administrative personnel held in their hands 
the decisions as to future living arrangements, giving 
the person concerned little choice or control.

“[After finishing residential boarding school] then they 
decide to either send you to a social care institution or find 
you an apartment if you are capable of living independently. 
The director makes the decision [...], if the person cannot 
take care of himself, then he [the director] sends them 
to a social care institution.”

(Man, 30, Latvia)

Stakeholders noted that guardianship laws may play 
a role in restricting the opportunities of people with 
intellectual disabilities to choose to enter or to leave 
social care homes. In Bulgaria, for instance, an advo‑
cacy organisation said that the majority of people with 
intellectual disabilities residing in institutions are placed 
under the guardianship of social workers or directors 
of the institution in which they live.44 In Hungary, being 
declared legally incapable, and therefore placed under 
plenary guardianship, is considered a way to enhance 
eligibility for places in institutions, stakeholders argued; 
thus some families may try to deprive relatives with 
intellectual disabilities of their legal capacity in order to 
secure them places in such establishments.45

The respondents also noted signs of change that had 
taken place in institutional facilities over time. Some 
commented on improved material conditions, others 
pointed to greater respect for residents’ personal dig‑
nity and privacy:

42  Many of the respondents identified diverse forms 

of residential facilities – including boarding schools, 
orphanages, small and large community living facilities, and 
various other forms of residential facilities – as institutions 
and described how many of these places had institutional 
characteristics and practices regardless of the number of 
people living there.

43  For more information on the deinstitutionalisation process  

in Europe, see Mansell, J., Knapp, M. et al. (2007).  
See also European Commission (2009).

44  Mental Disability Advocacy Centre (2007) Guardianship and 
Human Rights in Bulgaria, available at: www.mdac.info/
documents/Bulgaria%20report_comprehensive_English.pdf, 
p. 113.

45  Verdes, T. and Tóth, M. (2010) A per tárgya. Gondnokság 

alá helyezett személyek társadalmi kirekesztődésének 
mozgásformái a rendszerváltás utáni Magyarországon, 
Budapest, ELTE Eötvös Kiadó.

2424

Experiences of persons with intellectual disabilities

“[…] right at the beginning there were beatings […] when 
I was young […] that was the discipline […] not today, let’s 
say, the staff can’t do things any more like they did twenty 
or thirty years ago.[…] They only come in my room when 
I want them to [...].”

(Man, 50, Germany)

Respondents  who  had  experienced  life  both  in 
institutions and in the community spoke of life ‘inside’ 
and life ‘outside’ when they compared the two. Overall, 
they preferred more autonomy:

“In a home [and outside], they are two different worlds.”

(Woman, 34, Germany)

“I prefer to live outside institutions. It is better to live in the 
community as in this way one can be among people, can find 
a job, can talk to people, and can laugh with them. But when 
one lives in an institution one cannot find anything.”

(Woman, 44, Bulgaria)

“I did not like living together like that – so many people. 
Not together. Now it’s much better. You can live freely, like 
a human being. [...] When I was a kid I was scared to go 
out the door and be in public. I was very afraid. But now 
I am living in the community. Now I am free to go where 
I need to do my things and I am not scared any more. I feel 
independent and safe.”

(Man, 34, Latvia)

1�2�  daily living

education

The most striking finding with regard to education was 
how many respondents had received no or little educa‑
tion and that the majority who had attended schools 
were educated in segregated settings. Research has 
shown that children and youth with intellectual disabili‑
ties have the lowest educational attainment among all 
children with disabilities. Furthermore, they are often 
educated in segregated settings, as inclusive educa‑
tion is not widely available.46 In Germany, for instance, 
according to official sources only 15 % of all children 
with disabilities attend mainstream public schools and 
44 % of pupils in special schools are children and young 
people with intellectual disabilities.47 In France, about 
52,000 children were educated in mainstream schools, 
another 50,000 in special classes in mainstream schools 
and 115,000 in segregated schools.48 In Latvia, according 

46  Ebersold, S., Schmitt, M.J. and Priestley, M. (2011).
47  Germany, Nationaler Bildungsbericht 2010, 

Bundestagsdrucksache 17/3400, available at: www.
bildungsbericht.de/daten2010/bb_2010.pdf.

48  De Lacerda, E., Jaggers, C., Michaudon, H., Monteil, C., 

and Trémoureux, C. (2010) La scolarisation des enfants et 
adolescents handicapés, Note d’information, p. 12, available 
at: http://media.education.gouv.fr/file/11/9/5119.pdf.

to an NGO report, in 2008, 4,586 children with intellec‑
tual disabilities studied in special education institutions, 
and only 931 children attended mainstream schools.49 In 
addition, 13.7 % of children with intellectual disabilities 
had never attended school at all.50

In Sweden, special education in segregated schools for 
pupils with intellectual disabilities is rare. Persons with 
intellectual disabilities are either included in regular 
classes in mainstream schools or attend special classes 
within a mainstream school. In both cases education is 
provided at a slower pace and the curriculum is appro‑
priately adapted.

Most research respondents had attended a segregated 
school  and  only  two  had  university  education.  The 
experiences  of  the  respondents  differed  and  they 
expressed various views concerning education qual‑
ity and outcomes. Some said they felt little effort had 
been put into their schooling by education authorities.

“I finished two [grades]. They gave me sleeping pills at 
school and I spent most of the time sitting under the desk, 
I just did not want to study.”

(Man, 36, Latvia)

In Bulgaria, most respondents were placed in vocational 
schools for young adults with intellectual disabilities and 
learned skills in sewing, machine processing, cooking, 
construction or gardening. They still lacked, however, 
the literacy skills taught in general education curricula.

“[…] I am illiterate. I feel ashamed of this but it is the truth 
[…]. I need to pay for my education but to be able to pay 
I need to have a job and I do not have a job now.”

(Man, 28, Bulgaria)

“Once you have an intellectual disability you are deprived of 
the simple right to education and this makes you a cripple 
till the end of your life […]. But once you are over 16 no 
one wants to teach you in general schools if you have 
a disability.”

(Man, 32, Bulgaria)

Elsewhere, respondents recounted positive educational 
experiences, highlighting the skills they had developed 
at special schools:

49  Erdmane, A., Leimande‑Veldmeijere, I., Mucins, R., Veits, U. 

(2009) Report on the Implementation of the World Health 
Organization’s Mental Health Declaration and Action Plan in 
Latvia, Riga: ZELDA Resource Centre for People with Mental 
Disability, p. 33, available at: http://zelda.org.lv/wp‑content/
uploads/file/REPORT‑86lpp‑10dec‑2.pdf.

50  Latvian Movement for Independent Living (2010) 
Children and Young Persons with Intellectual 
Disabilities in Latvia, p. 7‑8, available at: www.lkndz.lv/
lv/?n=informativie_resursi.

2525

Choice and control: the right to independent living

“[Going to a special school] for some people, it is a plus that 
bears its fruits. […] I learned to read and write there.”

Promising practice

(Man, France)

“From the moment I went from the ordinary setting to the 
protected setting, how to say, for me, it helped […] there was 
less pressure, I got along well with my classmates.”

(Man, France)

“The years I spent at [boarding school] were the best two 
years of my school life […] I just felt comfortable. I was 
learning new skills like washing, cleaning teeth, and then 
I was doing things that I didn’t get a chance to do at my 
previous schools. Playing sports on grass instead of concrete 
[…] and because there were only 30–35 of us, you did a lot 
better than you would have done if you had been in a school 
of 100 or 150. Because you got to know each other better.”

(Man, 40, United Kingdom)

Some  research  respondents  who  were  active  in 
self‑advocacy groups51 strongly supported the inclu‑
sion  of  children  with  intellectual  disabilities  in 
mainstream education.

“First of all, I don’t like special schools. They’re not a good 
solution. To separate people just because they happen to 
have a diagnosis is not right. But we keep fighting here at 
[self‑advocacy organisation] and even I fight for the rights 
to attend a mainstream school and get the help that you 
need and to make it so that the education is tailored to the 
students’ needs. That is something I find very important.”

(Man, 45, Sweden)

Some stakeholders suggested, however, that it can 
be difficult for children with intellectual disabilities 
to attend mainstream education, either because the 
schools fail to provide reasonable accommodation due 
to a lack of financial resources or because of the dis‑
criminatory attitudes of school authorities.

“There is very clear discrimination in education against 
people with intellectual disabilities. When my son was 
seven, the schools explained to me that he was uneducable. 
The teaching materials and programmes were not adapted to 
the needs of children with intellectual disabilities.”

(Chair of a parents’ association, Bulgaria)

51 

In self‑advocacy groups people learn to speak up for 
themselves and the things that are important to them, and 
support each other in developing and using self‑advocacy 
skills regarding, for example, communication and negotiation.

2626

making education inclusive

ELTE  University 
in  Hungary  partnered  with 
information  technology  and  consulting  company 
International  Business  Machines  (IBM)  to  create 
a  support  system  for  students  with  disabilities 
that  would  enable  them  to  meet  mainstream 
academic  requirements  through  the  help  of 
information 
techniques  such  as 
specialised 
technology  devices  and  a  peer  mentor  system. 
The  university’s  social  sciences  department 
developed a new equal rights policy which focuses 
on  enhancing  accessibility  and  offers  intensive, 
personally tailored support instead of exemption 
from exams or the setting of easier assignments. 
In  addition,  IBM  offers  internships  to  students 
with  disabilities  and  support 
infrastructural 
development  on  the  university’s  two  campuses 
to  make  them  accessible  for  persons  with 
disabilities.  The  programme  was  launched  in 
2009  and  20  students,  of  whom  three‑quarters 
have  mental  health  problems  and/or  intellectual 
disabilities, have taken part.

The  Special  Education  Centre  established  by  the 
Speranţa  Habilitation  Foundation  in  Timişoara, 
Romania,  focuses  on  helping  children  with 
intellectual disabilities integrate into mainstream 
schools.  The  centre  offers  support  to  both 
families  and  schools 
in  the  mainstreaming 
process, and works to change society’s attitudes 
towards  children  with  intellectual  disabilities. 
The  foundation  also  acts  as  a  resource  centre 
for  mainstream  schools,  providing  information 
and  counselling  for  teachers,  parents  of  children 
with  disabilities  and  the  children’s  schoolmates; 
through 
offering  support 
a support teacher; and developing and distributing 
adapted curricula.

the  classroom 

in 

For more information on the project in Hungary, see: www.
elte.hu/file/yves_beszed.doc and www.mastertema.eu/
studentlife/special; and in Romania, see: www.eenet.org.uk/
resources/docs/speranta.php

employment

The Equality Employment Directive52 prohibits direct 
and indirect discrimination, as well as harassment and 
any instruction to discriminate on grounds of disability, 
religion and belief, age, and sexual orientation. It covers 
the fields of employment and occupation, vocational 
training and membership in employer and employee 
organisations. It sets out minimum requirements and 
Member States may provide for a higher level of pro‑
tection in national legislation. According to Article 5 of 
the directive employers are required to take appro‑
priate measures to enable persons with disabilities 

52  Council Directive 2000/78/EC, OJ 2000 L 303.

Experiences of persons with intellectual disabilities

to access, participate in, or advance in employment, 
or to undergo training, unless such measures would 
impose  a  disproportionate  burden  on  employers 
(‘reasonable accommodation’).

However, many respondents spoke of the obstacles 
they encountered when looking for work and at work, 
linked mainly to negative attitudes and direct or indirect 
discrimination.

“It is not easy to know if you should be honest and tell 
people about your impairments – or if you should hide them. 
In both cases you might end up being unfairly treated. If you 
don’t tell – that’s wrong. If you tell they will discover your 
shortcomings.”

(Man, 42, Sweden)

“At the beginning it was very hard, they had difficulties in 
accepting a disabled person in town […]. Yes, yes, yes […] 
I had a harsh foreman […] he said to me: ‘so you’ve come 
from [organisation for people with disabilities]. Anyhow, 
disabled people have no place here [name of town]. This is 
of no use’. I was shocked then […] in fact it was psychological 
harassment. He had difficulty working with a disabled 
person. And then I met with another foreman, who takes 
care of me.”

(Man, 42, France)

Social security legislation requirements can also affect 
persons with intellectual disabilities. A respondent in 
Sweden, for instance, spoke about how his special edu‑
cation certificate influenced the employment choices 
offered to him:

“We are discriminated against when it comes to work; we 
can’t register with the Public Employment Office and expect 
to get a job, because we have marks from special education 
[special education certificates] and then you are offered daily 
activities instead of a regular job.”

(Man, 23, Sweden)

The mother of a man with intellectual disabilities in 
Bulgaria shared a similar problem:

“I have to say that the medical assessment commission 
prohibited my son from working, even though he is able 
to do a lot of things, especially those that require physical 
labour. I initiated a case before the National Labour Medical 
Assessment Commission to challenge the assessment. 
So even if he applies for a job and the employer hires him, 
that employer would be breaking the law. He was assessed 
as having 98 % reduced working capacity and was deprived 
of the right to an assistant.”

(Mother of man, 22, Bulgaria)

Nevertheless,  there  is  evidence  that  persons  with 
intellectual disabilities have limited employment oppor‑
tunities. For instance, according to official sources53 in 
Sweden only 10 % of people with intellectual disabili‑
ties are in employment. In the United Kingdom,54 only 
6.4 % of adults with moderate to severe intellectual dis‑
abilities who are known to social services departments 
are in paid employment, while in Romania the figure 
is only 1 %.55 Furthermore, in some countries persons 
with intellectual disabilities can be considered as unfit 
to work on the basis of their medical diagnosis without 
an evaluation of their individual skills.

Some  EU  Member  States  have  taken  measures  to 
improve the situation. Sweden has, for instance, devel‑
oped a range of special services to assist in labour mar‑
ket integration through work internships, subsidised 
positions, sheltered employment in the public sector 
and  special  introductory  and  educational  support, 
including a support person. In 2009, between 22 % 
and 23 % of new respondents in the special introduc‑
tory and educational support scheme were people with 
intellectual disabilities and people with mental health 
problems,  according  to  official  sources.56  Research 
respondents saw work as an important part of every‑
day life, a value in itself, a way of proving one’s worth 
and means to actively contribute to and engage with 
society. They often expressed the wish to engage in 
valued and productive activities:

“I feel bored staying here in the home. I want to work. 
And I know that I will work from July to December this year 
at the place where the others work temporarily now. I want 
to work to earn money. It would be more interesting to 
work.”

(Woman, 44, Bulgaria)

“If I worked, I would like to be an operator at a phone centre. 
I enjoy talking with people. Not with people who live or work 
here [at the day care centre]. […] with people in the outside 
world.”

(Woman, 52, Greece)

53  Sweden, Public Employment Service, (Arbetsförmedlingen/

Statistiska centralbyrån) (2009) Funktionshindrades situation 
på arbetsmarknaden 4:e kvartalet 2008.

54  United Kingdom, Office for Disability Issues (not dated) 
Jobs for People with Learning Disabilities, available 
at: www.officefordisability.gov.uk/odi‑projects/
jobs‑for‑people‑with‑learning‑disabilities.php.

55  Romania, National Authority for Persons with a Handicap 

(NAPH) (2011), Statistical Data, 30 June 2011, Q1.

56  Sweden, Public Employment Service (Arbetsförmedlingen) 
(2010) Arbetsmarknadspolitiska program. Årsrapport 2009. 
Ure 2010:1, p. 122.

2727

Choice and control: the right to independent living

Promising practice

assisting with the job search

Programmes  and  initiatives  to  support  persons 
with  intellectual  disabilities  to  find  employment 
are in place in many EU Member States. Some are 
national‑level policies designed and implemented 
by  governments  or  private  companies,  while 
others are organised by civil society organisations 
and may be focused on specific towns or cities.

The  Romanian  Ministry  of  Labour,  Family  and 
Social Protection issued Order No.1/2011 in January 
2011 creating a new occupation called ‘Specialist in 
supported employment (job coach)’ to complete 
the  Romanian  Classification  of  Occupations.  This 
role consists of assisting, analysing and proposing 
measures  for  persons  with  disabilities  who  are 
seeking  employment,  and  providing  support  for 
activities  in  the  workplace.  The  supermarket 
chain  ICA  in  Sweden  launched  a  campaign  in 
2009  called  ‘We  can  do  more!’,  with  the  aim  of 
employing between 500 and 1,000 persons with 
intellectual  disabilities  within  three  years.  By 
the  end  of  2011,  more  than  900  persons  with 
intellectual disabilities had been recruited.

In  Latvia,  the  NGO  Saule  runs  a  Supported 
Employment  Bureau,  which  provides  assistance 
to persons with intellectual disabilities in finding 
jobs  and,  if  necessary,  provides  coaching  and 
further  support  once  the  person  is  working. 
The  system  has  helped  eight  clients  with 
intellectual  disabilities  to  stay  in  jobs  for  long 
periods of between three and eight years.

For more information on the initiative in Romania, see: 
http://reports.ica.se/ar2011en/Start/Sustainability/
ICA+in+the+community/Important+events+in+2011 and www.
ica.se/Global/Om%20ICA/Pdf/ICA_GRI_(E)_110308.pdf; and in 
Latvia, see: http://saule‑rb.lv/info.php?sadala=4&asadala=5

day centres

Many respondents said that when not in full‑time paid 
employment or education they spend their time in day 
centres. Most respondents in Greece attended day ser‑
vices which they referred to as ‘schools’. In most cases, 
parents made the choice of day service. Still, most Greek 
respondents liked their ‘schools’:

with their parents and with limited contacts outside 
the family:

“Children who are at specialised centres have some way 
out; they leave the home for several hours and this is good 
for them. There they have a psychologist, a social worker, 
a trainer; they have something to do.”

(Stakeholder, Greece)

In Romania, all respondents mentioned the important 
role of day care centres in ensuring interaction and com‑
pany, as well as in making information that concerns 
them accessible. They stressed, however, that access 
to such facilities depends on financial resources and 
the availability and willingness of family members with 
whom they live to accompany them.

In Latvia, a man now attends a day centre he learned 
about from a television programme. This was his first 
opportunity to spend his time in any meaningful way:

“I wandered around the city [...] or stayed at home between 
four walls.”

(Man, 23, Latvia)

Another man wanted to attend the day centre to spend 
more time with people and:

“To learn something. […] I come around 8:30, eat breakfast 
and lunch then after lunch I go to work.”

(Man, 38, Latvia)

However, respondents also raised concerns about day 
centres, arguing that such settings offer little scope 
for integration. Respondents in Hungary, for instance, 
suggested that active social involvement is offered 
mainly among persons with disabilities who attend 
other day centres.

Some stakeholders also raised issues related to the 
quality of care provided in day centres and their ability 
to meet the needs of all interested persons. They sug‑
gested, for instance, that staff may not be sufficiently 
trained, or that the services may be inappropriate for 
some people.

“It is nice here. I am having a good time. I even work; 
I weave […] I want to come. I prefer it to staying at home 
all the time. I take music lessons as well.”

(Man, Greece)

“I decided to run a day‑care centre by myself as the 
experience I had with my daughter attending other day‑care 
centres showed that her condition worsened and she got 
epilepsy as a result.”

(Mother of a young adult with intellectual disabilities, Bulgaria)

Stakeholders  in  Greece  underlined  the  importance 
of day services for children as a means of providing 
some autonomy and self‑determination for those living 

2828

“The young adults who come into our centre have very 
different conditions and needs and we know that it is not 
appropriate for all of them to come to our centre. Some 
have much greater potential but have no other place to 
develop it. Others need much more support than what we 
can offer. However, we are at least one place where these 
adults can come and talk, learn and make friends. Otherwise 
they would stay at home watching TV or playing on their 
computers on their own.”

(Director of day centre, Bulgaria)

Forming a family

People with intellectual disabilities were in the past 
often prevented from having children.57 Obstacles con‑
tinue to prevent people with disabilities from forming 
a family. In Latvia, for instance, municipal regulations58 
in Riga do not permit people with intellectual disabilities 
in community‑based group homes to continue living 
there if they bear a child or start a family life. In the 
United Kingdom, the seventh Joint Parliamentary Com‑
mittee on Human Rights report59 noted that according 
to research the children of people with learning dis‑
abilities are more likely to be removed from their par‑
ents’ care than the children of people who do not have 
learning disabilities. Research suggests that this hap‑
pens in around 50 % of cases involving a parent with 
an intellectual disability. In France, on the other hand, 
a 2004 survey60 reported 144 ‘Support service for social 
life’ (Services d’accompagnement à la vie sociale, SAVS) 
in 61 regions supporting 683 families with at least one 
parent with an intellectual disability.61

Three respondents in Sweden had established families 
as adults, with two marrying partners who also had 
intellectual disabilities. One respondent was a parent, 
but the child lived with the mother. He was not provided 
with enough support, he said, to see his child as often as 
he would like. In France, one male respondent lived with 
his partner and their son, and two others had children 
but did not live with them. Few of the respondents with 

57  Compere, J.M. (2010) Parentalité : « L’art d’être parent », 

L’Entente, 2ème trimestre 2010 , 17ème année, n° 66.
58  Latvia, Riga City Council (2007), Binding Rules No. 96, 
Procedure of Receiving and Funding of Social Services, 
provided by Riga City Council (Rīgas domes saistošie 
noteikumi Nr.96, Rīgas pilsētas pašvaldības sniegto 
sociālo pakalpojumu saņemšanas un samaksas kārtība), 
11 December 2007, available at: www.likumi.lv/doc.
php?id=169136.

59  United Kingdom, Joint Committee On Human Rights – Seventh 
Report, 22 January 2008, available at: www.publications.
parliament.uk/pa/jt200708/jtselect/jtrights/40/4009.
htm#note257.

60  France, Laboratoire de Recherche PADI (2004) Enquête 

« Déficience intellectuelle et parentalité ». Lille : Laboratoire 
de Recherche Parents Avec une Déficience Intellectuelle 
(PADI).

61  Helfter, C. (2009) Une parentalité accompagnée. Actualités 
Sociales Hebdomadaires, n° 2631 du 6 novembre 2009, 
available at: http://sd‑1.archive‑host.com/membres/
up/129373388838288757/Parentatlite_39.pdf.

Experiences of persons with intellectual disabilities

intellectual disabilities had any experience of having or 
of taking care of children. Some of these experiences, 
however, concerned their children being taken into care 
and were negative:

“After my husband died we moved to live at my 
grandmother’s house. [She] took care of my son and me. 
But when she died my uncle decided to place me in a home 
and this is why they placed my son in a childcare home too.”

(Woman, 44, Bulgaria)

Three respondents in the United Kingdom reported their 
young children had been taken into care and they were, 
therefore, mistrustful of social services.

“I don’t trust social services. If you are a parent with learning 
disabilities, they think you are not able to look after your 
kids […]. They should put the support in at the beginning. 
We’ve been doing this training and we’ve been explaining 
that to them for years.”

(Man, 38, United Kingdom)

Stakeholders  in  Greece  said  that  carers  and  family 
members were concerned about the responses they 
should give to people with disabilities on the difficult 
issues of sexuality and marriage.

“When a child with intellectual disabilities asks why he/
she never went to school together with his/her sisters and 
brothers or cousins, and when another says that it is time 
to get married. What do parents say then? What can be the 
answer?”

(Stakeholder, Greece)

Parents and guardians play a significant role in shaping 
opportunities to establish and maintain relationships. 
A man in the United Kingdom described how his plans 
to marry had met with parental opposition, resulting 
in the break‑up of the relationship and his decision to 
move to a new area:

“Her dad really didn’t want the wedding to go ahead. He was 
really against it. So he told me mum in a letter what he was 
wanting. And what he was prepared to do. I think he wanted 
complete control, he did. [...] I had to call the whole thing off. 
I can see it now. She threw the ring at me, she did. We went 
our separate ways. Her family didn’t tell her any of what 
I knew and all that, so she was a bit confused. She didn’t 
know about the letter. She didn’t give me a chance to 
explain.”

(Man, 39, United Kingdom)

Other respondents spoke about family support in form‑
ing relationships:

2929

Choice and control: the right to independent living

“I had some relationships previously and it happened a few 
times that my partner was only after things I had and did 
not love me for who I am. And of course my family was only 
trying to protect me. I told my mum about this guy and that 
he was different. I told her not to judge him before getting 
to know him. […] Then my younger brother told me that our 
parents were not against me but they only love me and want 
to protect me and want you to be safe with somebody once 
they will not be around.”

(Woman, 30, Hungary)

Promising practice

lending families a hand

In  some  county  councils  in  Sweden,  health 
and  community  care  services  have  started 
educational  programmes  to  support  parents 
with  intellectual  disabilities.  These  programmes 
include  structured,  home‑based  educational 
activities led by professionals who guide and give 
feedback to parents. The aim is for the support to 
reduce stress and increase the self‑confidence of 
parents with intellectual disabilities. So far, around 
50 people have taken part in these projects.

For more information, see: http://english.skl.se/
municipalities_county _councils_and_regions/activities_1

access to healthcare

A general concern raised by research respondents was 
what they perceived as ‘lack of understanding’ by pro‑
fessional staff, in particular in healthcare. In the stake‑
holder focus group in Bulgaria, mothers of children with 
intellectual disabilities said that they felt that healthcare 
professionals underestimated their children’s poten‑
tial and focused only on their impairments. In France, 
a  respondent  suggested  that  health  professionals 
focused on individuals’ impairments, rather than on 
the individuals themselves:

“All these people, like psychologists and health professionals, 
they attempt to help people but they do not try to 
understand the problems of people, the problem of the 
individual who is behind the disabilities.”

(Man, 42, France)

In  the  United  Kingdom,  respondents  spoke  of  their 
problems with healthcare staff and services. They said 
that their physical symptoms, for instance, were not 
taken seriously by doctors. Medical staff have nega‑
tive attitudes, they added, or information is inacces‑
sible. They also said that they experienced particular 
unease when their usual doctor was unavailable and 
they  had  to  make  appointments  with  doctors  and 
nurses they did not know. Although in some instances 
people took assistants with them to appointments, this 
was not felt to be ideal, due to the lack of privacy this 

entailed. Respondents said, however, that healthcare 
services are improving, especially in surgeries where 
awareness‑raising training on intellectual disability 
had been carried out: two research respondents were 
in fact involved in training and awareness‑raising for 
general practitioners.

One  respondent  in  Sweden  said  he  had  not  faced 
problems in accessing specific healthcare services but 
complained of a lack of coordination between the dif‑
ferent bodies dealing with persons with disabilities.

The  FRA  conducted  fieldwork  research  focusing 
specifically on healthcare in regard to multiple dis‑
crimination. The results, which relate particularly to 
people with intellectual disabilities and a migration 
background, can be found in the upcoming FRA report.62

leisure

Respondents  had  little  choice  or  control  over  their 
leisure activities. Two young Romanian women said, 
for instance, that although they wanted to go out, they 
rarely did, because there was nobody to accompany 
them and they were afraid to go on their own. They also 
always needed their parents’ permission, they added. 
Others said that decisions about leisure activities were 
taken by their family or by social workers, whose pres‑
ence was sometimes mandatory on social outings.

“I enjoy theatre and cinema. I go there with my mother. 
She chooses the film or the play. [If I don’t like it] I cannot 
leave; I have to watch it all. Once I slept.”

(Woman, 32, Greece)

“I do not know whether we will go again on a trip to the 
seaside. Maybe if the ladies [social workers] decide we will 
go […] the ladies tell us when there are concerts in the city 
and sometimes they take us there.”

(Woman, 37, Bulgaria)

“And I had to laugh at the boy that day. He said ‘I’ve got 
a ticket for a band but I cannot go to hear it’. I said ‘How 
is it you cannot get to hear it?’ And he said ‘I forgot to get 
tickets for two staff.’ ‘How dare they – the two staff should 
sit outside and you go in!’ ‘Oh, I cannot do that.’ And the two 
staff were sitting in the cafe next to him when I said it to 
him. The two staff said [to me] ‘you’re so cheeky.’ ‘What??!! 
I’m only telling the truth – what I think. If I was going to 
go and you two were coming with me, I’d tell you to go sit 
outside and go and take a walk.’ What do you mean go take 
a walk?’ ‘Go on, clear off!’ ”

(Man, 63, United Kingdom)

Social and leisure activities are often organised in iso‑
lation and with little interaction with the mainstream 

62  See http://fra.europa.eu/fraWebsite/research/projects/

proj_multiplediscriminationhealthcare_en.htm.

3030

Experiences of persons with intellectual disabilities

society, respondents say. Hungarian interviewees com‑
plained that their cultural and leisure activities hap‑
pened mostly ‘behind closed doors’. When they talked 
about holidays, they emphasised that every year they 
go to the same place with the same people. Similarly, 
when they attended sporting events, it was always 
with the clients of a partner institution. Respondents 
in Germany said that leisure activities take place, at 
best, with other people with disabilities or with care 
professionals. Social isolation was seen as something 
undesirable by the stakeholders in Greece, who argued 
for more social interaction:

“There should be specific emphasis on the socialisation of 
people with intellectual disabilities. To be in the position to 
do things that everyone does, for instance, to go to a bar, 
when everyone else is there.”

(Stakeholder, Greece)

Another important aspect of participating in cultural and 
leisure activities is the possibility to travel independently, 
but most respondents had experienced difficulties.

“They showed us how to use the trolleybuses here but we 
can’t travel alone without an assistant. […] They do not allow 
us to go alone in the city as they are responsible for us and 
they are afraid something bad can happen to us.”

(Woman, 44, Bulgaria)

Respondents in Sweden commented that the transport 
provided them was cumbersome and did not give them 
equal opportunities to be mobile:

“One needs to order the transport many hours beforehand 
and one cannot decide the route taken by the car or 
minibus because you don’t know where the co‑passengers 
are going.”

(Man, 23, Sweden)

1�3�  support for daily living

In order to participate in the daily life activities described 
in the section above, persons with disabilities often 
require support. Support options can turn participation 
in the life of community on an equal basis with others 
into something particularly meaningful. If the support 
operates without the choice and control of the persons 
receiving it, however, it can curtail freedom. This sec‑
tion examines two options in some detail, namely the 
provision of a contact person or personal assistant and 
person‑centred support options. The information pro‑
vided in this section, however, may have changed as 
EU Member States are reviewing their relevant legisla‑
tion and policies to ensure compliance with the CRPD.

personal assistance

Sweden is the only country of the nine covered in the 
research that has developed legal provisions on the right 
to living arrangements and support (Law on Special Sup‑
port and Services for Persons with Disabilities, LSS).63 
The aim of this support scheme is to give people with 
intellectual disabilities more freedom to participate in 
mainstream daily activities and thereby to counteract 
their isolation. Under the LSS, persons with disabilities 
can benefit from one or more of the following services: 
personal assistance, companion services, contact person 
(support person), relief service in the home, short‑term 
minding of school children over 12, short stay away from 
home (respite care), group homes for children and adults, 
daily activities, counselling and other personal support.

The  roles  of  contact  person  and  personal  assistant 
merit  particular  attention.  Individuals  awarded  this 
type of help have the right to employ the assistant 
of their choice or to select the assistant, if they prefer 
a municipality to be the formal employer. The disabled 
person can also choose to have the assistance arranged 
through a user collective or a private provider. In addi‑
tion, the person has the right to decide what kind of 
help the assistant should give and in what way. All 
10 respondents in Sweden had access to specialised 
support services to facilitate independent living. Three 
of them had a contact person and positive experiences.

One woman said of her contact person, a middle‑aged 
woman:

“She is like my friend, I don’t think very much about not 
having friends of my own age.”

(Woman, 29, Sweden)

H er  co nt ac t  p erso n  was  a p p oi nte d  by  the 
LSS‑caseworker, but the respondent was first given the 
opportunity to meet the candidate and give her opinion 
before the appointment was finalised. Another Swedish 
interviewee, aged 45, has had his contact person for the 
last ten years. They meet every second week and go to 
the café, cinema and sports events. The man said that 
he was very pleased with how things were working out.

There are still practical problems due, arguably, to the 
structure of the welfare system. To help people with 
intellectual disabilities to overcome such difficulties, the 
law governing social support provides persons with the 
right to an individual plan which specifies the division 
of labour between the different agencies concerned 
and when and in what way their different tasks are to 
be accomplished.

63  Sweden, Law Concerning Support and Service for 

Certain Groups of Disabled People (Lag om stöd till visa 
funktionshindrade) (LSS, 1993) SFS 1993:387.

3131

Choice and control: the right to independent living

In the other countries researched various policies and 
programmes are in place to enable persons with dis‑
abilities to live independently. In Latvia, for instance, the 
Disability Law promotes community living and includes 
a right to a personal assistant.64 None of the research 
respondents in Latvia had a personal assistant, which 
at the time was available only to persons with visual 
impairments and then for only 10 hours per week. It is 
foreseen that as of 2013, however, people with other 
impairments will also be able to benefit from personal 
assistance for up to 40 hours per week. Bulgaria has 
also introduced legislation on personal assistance in 
the form of the Social Assistance Act.65 The Regulations 
for the Implementation of the Social Assistance Act, 
adopted in June 2010, entitle persons with mental health 
problems or intellectual disabilities (assessed with at 
least 71 % reduced labour capacity) to an assistant.66 
Such assistance is limited to 10 hours per year.

Existing legal provisions related to personal assistance 
are in some cases under review. In Romania, for instance, 
under Law 448/2006 people with severe disabilities, as 
assessed through social and psycho‑medical evaluation, 
have the right to a personal assistant.67 An amendment 
to this law in 2010 stipulated that people with a severe 
degree of disability will no longer be entitled to a ‘meas‑
ure of special protection’, in other words a personal 
assistant.68 Instead, they receive a monthly allowance 
from the city council. Stakeholders commented that, as 
a result, many people with disabilities had ‘dismissed’ 
their personal assistants, often family members, who 
had received this allowance as compensation but had 
not declared it as taxable income.

Programmes  in  France  and  Greece  provide  mainly 
domestic assistance. In Greece, municipalities offer 
a social welfare programme named ‘Help at Home’ 
designed specifically to help the elderly and people 
with disabilities living alone.69 None of the research 
respondents in Greece commented on the choice and 
control this programme afforded them in their daily 
lives. In France, support for meaningful community par‑
ticipation is provided by the Support Services for Social 
Life (Services d’accompagnement à la vie sociale, SAVS) 
and the Medical‑social Support Services for Disabled 
Adults  (Services  d’accompagnement  médico‑social 
pour adultes handicapés, SAMSAH). These services help 

64  Latvia, Disability law (Invaliditātes likums) of 20 May 2010, 

Section 1(1), available at: www.likumi.lv/doc.php?id=211494.
65  Bulgaria, Social Assistance Act, State Gazette, No. 56 dated 

19 May 1998.

66  Bulgaria, Regulations for Implementation of Social Assistance 

Act, 1 June 2010, Article 53a.

67  Romania, Law No. 448/2006 concerning the protection 
and promotion of the rights of persons with disabilities, 
republished in the Official Journal Part I, No. 1, 
3 January 2008.

68  Romanian Government Ordinance No. 84/2010 amending 

Law No. 448/2006 on the Protection of Handicapped People.

69  Greece, Law 5814/1997.

people with disabilities to manage daily living activities, 
such as housecleaning, shopping and cooking, and to 
handle administrative tasks.

person‑centred support

EU Member States, such as Germany and the United 
Kingdom, continue to evolve models of ‘self‑directed’ 
or ‘person‑centred support’ through mainly ‘direct pay‑
ments’ and ‘personal budgets’.

In  Germany,  personal  budgets  have  been  legally 
possible since 2001 and a legal right since 2008. Under 
this system, benefits are paid as sums of money or 
vouchers, which can be used by the claimant as they see 
fit. By 2009 around 10,000 recipients had used this form 
of benefit, according to official data.70 An evaluation 
conducted as part of the federal Multi‑provider Personal 
Budget Pilot Project (Modellprojekte ‘Trägerübergrei‑
fendes Persönliches Budget’ (2004–2007)) found that 
31  %  of  budget  recipients  within  the  project  (from 
a sample of 845 respondents) were people with intel‑
lectual disabilities (the percentage of people with men‑
tal health problems was 41 %).71

Research respondents in Germany who had access to 
specialised support services to facilitate independent 
living spoke of the positive impact these personal budg‑
ets had on the power relationships between them and 
those who supported them:

“In the employer model [personal budget], I hold perfectly 
normal job interviews.”

(Woman, 32, Germany)

“The employer model gives me more quality of life. […] 
This budget enables me to build my life up all over again.”

(Woman, 49, Germany)

Stakeholders in Germany also highlighted that personal 
budgets are an invaluable form of support enabling 
people with intellectual disabilities to achieve greater 
self‑determination and self‑esteem.

In the United Kingdom, direct payments became legal 
with the passing of the NHS and Community Care (Direct 
Payments) Act in 1996. While offering direct payments 
became  mandatory  for  local  authorities  in  2003  in 

70  Deutscher Bundestag (2009) Bericht der Bundesregierung 
über die Lage behinderter Menschen und die Entwicklung 
ihrer Teilhabe, p. 6, available at: http://dip21.bundestag.de/
dip21/btd/16/138/1613829.pdf.

71  Metzler, H., Meyer, T., Rauscher, C., Schäfers, M. and 
Wansing, G. (2007) Begleitung und Auswertung der 
Erprobung trägerübergreifender Persönlicher Budgets – 
Wissenschaftliche Begleitforschung der Modellprojekte 
„Trägerübergreifendes Persönliches Budget“, Tübingen, p. 82, 
available at: www.bmas.de/portal/23072/property=pdf/
f366__forschungsbericht.pdf.

3232

Experiences of persons with intellectual disabilities

England and Scotland and in 2004 in Wales and North‑
ern Ireland, the law initially stipulated that applicants 
must be ‘willing and able’ to manage the process to 
be eligible. This requirement was removed in 2009 in 
England72 and in 2011 in Northern Ireland, opening up 
the possibility for a third party to directly receive and 
manage the payments.73 Recipients of direct payments 
may decide who to employ, the hours they work and 
the tasks they carry out. Additionally, the recipient may, 
if he or she wishes, take all or part of the benefit as an 
allocation in kind, in other words as a service provided 
by an organisation, rather than in money.

Take‑up  of  direct  payments  and  personal  budgets 
(a modified form of direct payments) by people with 
intellectual disabilities has been low in comparison 
with people with physical disabilities. The number of 
people receiving direct payments also remains small in 
comparison with numbers living in residential care and 
those receiving community‑based services.74 Neverthe‑
less, according to NGO research, take‑up increased from 
60 people in 2006 with intellectual disabilities reported 
to them as having personal budget to some 30,000 
across 75 local authority areas at the end of 2009.75

One respondent who received direct payments said that 
she used it to employ workers from an agency, which 
also  dealt  with  the  related  administrative  arrange‑
ments. Although in the main the same people visited 
each week, this was not guaranteed and she did not 
point out particular benefits to the arrangement com‑
pared with others. Nevertheless, it appeared that she 
did have some control over who provided assistance: 
she said that one assistant who had stolen money from 
her was not resent.

72  United Kingdom (England), Health and Social Care Act (2008).
73  United Kingdom, Department for Children, Schools and 

Families (2009) Guidance on Direct Payments for Community 
Care, Services for Carers and Children’s Services London: 
Department of Health, available at: www.dh.gov.uk/
prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/
documents/digitalasset/dh_121131.pdf.

74  United Kingdom, NHS Information Centre for Health and 

Social Care (2009) Community Care Statistics 2008‑09: 
Social Services Activity Report, England, available at: 
www.ic.nhs.uk/webfiles/publications/Social%20Care/
socialcarepubs280410/Community%20Care%20Statistics%20
Social%20Services%20Activity%20Report%20England%20
‑%202008‑09%20FINAL2.pdf.

75  Tyson, A., Brewis, R., Crosby, N., Hatton, C., Stansfield, J., 

Tomlinson, C., Waters, J., and Wood, A. (2010) A Report on 
In Control’s Third Phase, available at: www.in‑control.org.
uk/media/55999/in%20control%20third%20phase%20
report%20.pdf.

Promising practice

supporting community living

In  the  United  Kingdom,  KeyRing  has  set  up 
a  series  of  networks  to  support  people  with 
intellectual  disabilities  to  live  in  the  community. 
Each network is made up of 10 people living close 
to one another: nine who live in their own homes 
but  need  support,  and  one  Community  Living 
Volunteer.  The  aim  of  the  networks  is  for  the 
members  to  support  and  assist  each  other  with 
daily living skills and activities, with the volunteer 
seeing members regularly and helping the group 
to  work  together.  The  volunteer  also  supports 
other members of the network to explore events 
taking place locally and to get involved in them. 
Paid Community Support Workers and Supported 
Living  Managers  can  provide  additional  support 
services if required.

For more information, see: http://www.keyring.org/home

1�4�  participation 

in the community

Participation  and  inclusion  in  community  life  is 
fundamental to independent living. This section will 
address the experiences of people with intellectual 
disabilities  on  two  key  issues,  namely  establishing 
a voice in public and political life and participating in 
the self‑advocacy movement.

participation in public and political life

The FRA report on the right to political participation 
showed that in most EU Member States persons with 
intellectual disabilities deprived of their legal capacity, 
were in consequence also automatically denied their 
right to vote.76 Of the nine countries covered by the 
fieldwork research persons with intellectual disabilities 
maintain the right to vote regardless of legal capacity 
solely in Sweden and the United Kingdom. In Hungary 
and France, a judge decides on the exercise of the right 
to vote on a case‑by‑case basis.

A milestone development in this regard is the Council 
of Europe Committee of Ministers recommendation of 
16 November 2011 on the participation of persons with 
disabilities in political and public life, which states that 
“all persons with disabilities, whether they have physi‑
cal, sensory, or intellectual impairments, mental health 
problems or chronic illnesses, have the right to vote 
on the same basis as other citizens, and should not be 
deprived of this right by any law limiting their legal 
capacity, by any judicial or other decision or by any 

76  FRA (2010).

3333

Choice and control: the right to independent living

other measure based on their disability, cognitive func‑
tioning or perceived capacity”.77 Subsequently, the Euro‑
pean Commission for Democracy through Law (Venice 
Commission) amended its interpretation of its Code of 
Good Practice in Electoral Matters to state that people 
with disabilities should “be able to exercise their right to 
vote and participate in political and public life as elected 
representatives on an equal basis with other citizens”.78

Evidence from the interviews suggests that participation 
in public and political life was closely connected to 
awareness and accessibility of the electoral process. 
Respondents in Latvia said they had voted in elections 
and received information from booklets and newspa‑
pers. None of them recalled, however, that anyone had 
helped them to understand more about the election 
results or party platforms. Other respondents were often 
not aware of the reasons for their disenfranchisement.

“My stepfather arranged it this way so I can’t vote and I do 
not even get called up for military service.”

(Man, 37, Hungary)

Some respondents in Germany and the United Kingdom 
commented on the right to stand for elections and on 
the  absence  of  people  with  intellectual  disabilities 
in parliament.

“We need more people with learning disabilities in 
Parliament to change the laws. And you could have people 
with learning difficulties being in the House of Lords. […] 
So more people with learning difficulties as MPs (Members 
of Parliament) and MEPs (Members of the European 
Parliament).”

(Man, 53, United Kingdom)

“That there’s a place in politics for disabled people, that 
people have a chance to get involved in politics.[…] I think 
a quota would be good […] because they’d be more in the 
public eye.”

(Woman, 49, Germany)

Respondents also noted the need for greater consultation 
and participation of persons with disabilities and their 
representative organisations in policy making.

“People at the ministries and authorities should talk to 
people like me when they develop legislation and policy. 
They should ask us what we want and need, and not make 
our lives more difficult.”

(Man, 32, Bulgaria)

In the United Kingdom, several people with intellectual 
disabilities were active in campaigning and considered 

77  Council of Europe, Committee of Ministers (2011), Appendix 

point 3.

78  European Commission for Democracy through Law (Venice 

Commission) (2011).

3434

this to be an effective means of raising the govern‑
ment’s awareness about their issues.

“I don’t know about human rights but I’d like the government 
to listen to us.”

(Woman, 38, United Kingdom)

Promising practice

Making elections accessible

EU  Member  States  have  undertaken  several 
initiatives to address the accessibility of electoral 
processes.  Germany  published  easy‑to‑read 
information  about  the  electoral  process.  In  the 
United  Kingdom,  Mencap  worked  with  political 
parties 
into 
easy‑to‑read  versions,  leading  to  a  doubling  of 
the  vote  of  those  with  intellectual  disabilities 
compared to earlier campaigns.

their  manifestos 

transform 

to 

For more information on Germany, see: www.sovd‑bv.de/file‑
admin/downloads/wahlhilfe/pdf/bundestagswahl05.pdf; and 
on the United Kingdom, see: www.mencap.org.uk/campaigns/
take‑action/get‑my‑vote.

A  pan‑European  project  also  suggested  ways 
to  make  elections  more  accessible,  such  as  the 
need  to:  enhance  awareness‑raising;  improve 
access to polling stations and produce accessible 
information; train staff; and involve organisations 
that  promote  and  defend  the  rights  of  disabled 
persons. The project ‘Voting for all’ was carried out 
by Inclusion Europe, together with self‑advocates 
from  member  organisations  in  Scotland  (Enable 
Scotland),  France  (Nous  Aussi)  and  the  Czech 
Republic (SPMP).

For more information, see: www.inclusion‑europe.org/
images/stories/documents/Project_ADAP/index.html

role of self‑advocacy and peer support

Respondents who were more politically engaged, and 
more aware of their rights, were often members of 
self‑advocacy  organisations.  In  such  organisations 
people  with  intellectual  disabilities  discuss  among 
themselves matters that concern them. Self‑advocacy 
organisations  and  disabled  persons  organisations 
(DPOs) are a crucially important way for channelling 
the needs and views of persons with disabilities, and 
most importantly, for engaging them actively in an 
emancipatory political process. Such organisations can 
also provide important support services and help to 
increase awareness among persons with intellectual 
disabilities of their rights and entitlements.

Promising practice

Encouraging self‑advocacy and 
peer support

self‑determination 

Overall,  peer  support  organisations  aim  at 
increasing 
rights 
awareness of persons with disabilities. They also 
help  with  everyday  life  situations  and  access  to 
justice.

and 

In  Germany,  the  network  People  First  (Mensch 
zuerst)  organises  a  weekly  ‘Talk‑Hour’  (Sprech‑ 
Stunde)  during  which  persons  with  intellectual 
disabilities can contact the organisation and talk to 
one of its employees or co‑workers.79 The regular 
session  aims  to  give  persons  with  intellectual 
disabilities  the  opportunity  to  ask  questions 
about  issues  that  are  important  to  them,  such  as 
support services, accommodation options and local 
self‑advocacy groups.

People  with  disabilities  have  benefitted  greatly 
from peer support organisations’ role in providing 
free  legal  support.  In  Sweden,  the  Swedish 
Disability  Federation  (LaSSe  Brukarstödcent)  is 
an  independent  organisation  whose  counsellors 
offer  advice  on  legislation  and  policy.  In  2011, 
a  record  high  of  220  people  sought  individual 
advice,  generating  a  further  750  visits,  while 
counsellors also answered queries by phone and 
post. Most advice (41 % of requests) was sought 
on  economic  issues,  such  as  sick  pay,  funding 
requests,  disability  allowance  and  personal 
assistance,  with  other  major  concerns  being 
personal care, psycho‑social support and leisure, 
including  people  to  accompany  persons  with 
intellectual disabilities in social activities.

For more information on the Network People First, see: 
www.people1.de/was_machen_wir.html; and on the Swedish 
Disability Federation, see: www.lassekoop.se/aerenden‑, 
as well as user support centres (Brukarstödscentrum), see 
www.brukarstodcentrum.se

79

Peer support and self‑advocacy organisations in the 
nine Member States covered by the research are at 
different stages of development and vary in capacity. 
There are no developed self‑advocacy organisations in 
Bulgaria, while in Greece parents’ associations estab‑
lished the majority of organisations offering services to 
people with intellectual disabilities. In Hungary, Latvia 
and Romania only a few respondents were either part 
of a self‑assertiveness group themselves or were aware 
of organisations to which they could turn for support. In 
the United Kingdom, several respondents participated 
in the national self‑advocacy support organisation of 
people with intellectual disabilities, People First. Peo‑
ple First covers: in Scotland80 over 90 local groups; in 

Experiences of persons with intellectual disabilities

Northern Ireland, seven;81 in Wales, 23;82 and in England, 
18. In Sweden, user organisations play a vital role in dis‑
seminating information about the abilities and interests 
of persons with intellectual disabilities.

“We will show society that we are capable, too. We can do 
more than people believe. We need to come out!”

(Woman, 53, Sweden)

While  peer  support  organisations  provide  much 
needed services and play a vital role in forging the 
self‑determination of persons with disabilities, their 
funding was generally considered uncertain. At the time 
of the interviews widespread cuts to public services had 
hit funding and at least one such organisation had had 
its funding withdrawn.

“A lot of them are going under. And that’s the problem, 
we desperately need all different types of advocacy and it 
needs to be really funded. If it’s not funded by grants and 
government and local authority then we need to make sure 
that it’s self‑sufficient.”

(Man, 45, United Kingdom)

1�5�  Barriers to inclusion 
and participation

This section examines the experiences of respondents 
on issues which restrict choice and control in the lives 
of persons with disabilities, such as restrictions of legal 
capacity, institutional regimes and cultures, difficulties 
in accessing justice, bullying, harassment and abuse, 
administrative barriers and financial issues, such as the 
impact of austerity measures and low income.

restrictions of legal capacity

A  variety  of  legislative  provisions  regulate  the 
deprivation of legal capacity and the appointment of 
guardians in the countries covered by the research, 
affecting people’s choice and control over their lives.

Around half of the research respondents with intellectual 
disabilities had been wholly or partially deprived of 
their legal capacity and placed under different forms 
of guardianship, including the majority of respondents 
in Greece. Several respondents gave accounts of how 
their legal guardians, who are often also family mem‑
bers, had curtailed their opportunities to make choices. 
The guardians exercised control over financial affairs, 
but in some cases they also took over other aspects of 
people’s lives, which respondents did not like:

79  See www.people1.de/was_machen_wir.html.
80  See: www.peoplefirstscotland.org/index.html?pid=1.

php.

82  See: www.allwalespeople1st.co.uk/news.asp.

81  See: www.peoplefirstltd.com/members‑northern‑ireland.

3535

Choice and control: the right to independent living

“My mum is my guardian and I can’t say ‘no’ to her [...] 
If she wants me she can phone up the house. And the house 
phones her. Everything is controlled by her. And I can’t 
breathe. Because she’s there – in my face. In this. In that. 
And you know she’s everywhere. And I’ve tried to [...] I know 
she’s my mum but [...] I’ve tried to move away from her 
slowly but it’s not working.”

(Woman, 27, United Kingdom)

“If I really fancy something then I ask my mum and she will 
tell me whether I can buy it or not. […] How can I say […] she 
is my guardian so therefore I always have to ask her about 
everything.[…] I always discuss everything with her – just to 
be on the safe side.”

(Man, 37, Hungary)

A  Swedish  man  explained  that,  because  he  had 
mishandled some of his bills, staff in his group home 
had, without his consent, successfully applied for him 
to be placed under guardianship eight years ago, which 
he had found upsetting. When asked what the guardian 
managed, he said:

“For the moment she pays my bills but she also decides too 
much about my financial affairs. If I have money I want to 
make my own decisions.”

(Man, 39, Sweden)

Other respondents who were under supported deci‑
sion making schemes, rather than plenary guardianship, 
viewed it as a source of practical support, particularly 
with paperwork and finances.

“I’d say, you know, for papers, repayments, all that stuff, 
I’d say it’s simpler.”

(Man, 31, France)

“I can’t go out and buy that car or sign up for a contract 
with a phone provider because the [guardian] has the last 
word. I trust him and he trusts me. I have always wanted 
it that way, because I can’t handle real money. I have had 
a [guardian] for over 10 years, ever since I got the [disability] 
pension.”

(Man, 31, Sweden)

There was a wide variation among respondents in their 
awareness levels of the implications of guardianship. 
When asked if she wanted to vote, one woman under 
guardianship replied:

Woman: “I can’t do that anymore.”

Interviewer: “Why?”

Woman: “I don’t know. I do not receive such letters anymore 
and I was also told that pensioners [people receiving 
disability pension] can’t do this anymore.”

(Woman, 27, Hungary)

In contrast, respondents in Hungary who were involved 
in a self‑advocacy organisations had a better awareness 
of their situation.

“I am under comprehensive guardianship. […] Yes. Because 
of this I cannot vote and we cannot get married either. I am 
not the only one with these problems, there are many of 
us. I cannot sign an employment contract; I cannot work 
so I have many such disadvantages.”

(Man, 53, Hungary)

Finally, respondents in Germany, where all respondents 
living in group homes had a legal guardian, advised 
caution in the way guardianship is used:

“Don’t just give everyone a guardian, check more carefully.”

(Woman, 34, Germany)

administrative barriers

Several respondents commented on administrative 
barriers that limited their choice and control over their 
place of residence. The barriers are mostly connected 
to eligibility for benefits or availability of assistance in 
the new location:

“I think they are having either a discussion or argument 
about it, who’s going to take it on. In fact last week a social 
worker actually came to my flat – from the [local area] 
social services and asked me lots of questions. He asked 
me how I would cope if I didn’t have any support and I told 
them I wouldn’t like that. I’m quite happy the way things are 
so hopefully it will stay.”

(Man, 39, United Kingdom)

“It may also happen that you need to make a new 
application, for instance if the matter concerns housing or 
daily activities if you want to move. You also need to have 
a new caseworker which means that you have to tell your 
story once again.”

(Man, 31, Sweden)

3636

Experiences of persons with intellectual disabilities

One respondent in Latvia spoke of the administrative 
obstacles that over the past three years had prevented 
his wife from moving to live with him: his wife’s munici‑
pality refused to meet the costs of supporting her if she 
were to move to her husband’s municipality.

“I just want to live with her. I am just sick of it all. All I want 
is for her to live with me. Not this situation, where she is 
there and I am here.”

(Man, 32, Latvia)

On the other hand, a 46‑year‑old respondent in Latvia 
said that she and her husband were provided, imme‑
diately after their wedding, with a room of their own 
in their long‑term social care centre.

The  lack  of  easy‑to‑read83  material  or  not  knowing 
where and how to get it can prevent people with intel‑
lectual disabilities from accessing administrative infor‑
mation and making appropriate choices.

Interviewer: “Are there areas in your life where you would 
need some further support, things that you cannot do alone?”

Woman: “Well, sorting out my business with the authorities, 
you know, at the bureaus, that stuff is still not very clear. 
For example, let’s say when you need to sort out your 
identity card, or whatever.”

(Woman, 30, Hungary)

“Lots of groups have done something on human rights in 
easy read [...]. So the material is out there but I think it needs 
to be advertised more widely.”

(Man, 51, United Kingdom)

In Sweden, respondents and stakeholders spoke of the 
challenges in interacting with a wide range of welfare 
agencies, most importantly the public employment ser‑
vice, the social insurance office and the local healthcare 
centre (primary care), because of differences in their 
structures and functions. This was attributed to the 
complex and reportedly84 fragmented structure of the 
welfare system.

Promising practice

Providing accessible resources

Five  out  of  Latvia’s  14  ministries’  websites  have 
information in easy‑to‑read language developed in 
cooperation with the NGO Agency of Easy‑to‑read 
Language  (Vieglās  valodas  aģentūra).  Important 
state bodies, such as the Ombudsman, the State 
Inspectorate  for  Protection  of  Children’s  Rights, 
the  Central  Election  Commission  and  the  State 
Employment  Agency  also  provide  easy‑to‑read 
versions on their websites.

In  France,  the  National  Union  of  Associations  of 
Parents of People with Intellectual Disabilities, and 
of their Friends (Union Nationale des Associations 
de  Parents  de  personnes  handicapées  mentales 
et  de  leurs  amis,  UNAPEI)  is  promoting  the 
general use of a pictogramme « S3A » (Symbole 
d’accueil,  d’accompagnement  et  d’accessibilité), 
which  would  allow  people  with 
intellectual 
disabilities  to  locate  the  places –  such  as  shops, 
services and administration offices – which offer 
assistance  and  adapted  services.85  The  symbol 
is  intended  for  display  on  counters,  transport, 
goods or documents.

For more information on UNAPEI, see: www.unapei.org/
le‑pictogramme‑S3A‑symbole‑d.html for the pictogramme 
« S3A » and the 2010 Guide pratique de l’accessibilité, p. 75

85

Financial problems

A significant factor determining the range of choice and 
control persons with disabilities can have over their lives 
is personal income. According to the Social Situation 
Observatory report on income distribution and living 
conditions, on average across the EU as many as 21.6 % 
of men and 20.6 % of women who report disabilities 
across all age groups are at risk of poverty, as opposed 
to 13.5 % and 14.7 %, respectively, of those who do not 
report disabilities.86 Lack of financial resources limits 
the possibilities of persons with disabilities to live inde‑
pendently and be included in the community and makes 
them more reliant on families and informal support.

83  Everyone has the right to information they can understand 
in order to be able to take informed decisions. For more 
information on what constitutes ‘easy‑to‑read’ material, 
see the ‘Pathway’ project of Inclusion Europe, available 
at: http://inclusion‑europe.org/pl/icon‑display‑polityki/
self‑advocacy‑and‑accessibility/easy‑to‑read‑project.
84  Lindqvist, R. (2000) Att sätta gränser. Organisationer och 

reformer i arbetsrehabilitering. Umeå: Boréa.

85  UNAPEI (2011) Le pictogramme « S3A »: symbole d’accueil, 
d’accompagnement et d’accessibilité, available at: www.
unapei.org/le‑pictogramme‑S3A‑symbole‑d.html; UNAPEI 
(2010) Guide pratique de l’accessibilité, Paris, Union Nationale 
des Association de Parents, de personnes handicapées 
mentales et de leurs amis, p.75.

86  European Commission, Social Situation Observatory – 

Income distribution and living conditions, Research Note 5 
/2011 The situation of working‑age people with disabilities 
across the EU p. 15, available at: www.socialsituation.eu/
research‑notes/SSO2011%20RN5%20Disability_Final.pdf.

3737

“[With] all the cutbacks, when the services are not there, and 
[there’s] not anybody supporting you, they will end up going 
back to these institutions. And we’ve got to fight to make 
sure that they do not go backwards.”

(Man, 51, United Kingdom)

impact of experiences in institutions

An institution is defined not by its size but primarily by 
its organisational structure and culture which can, and in 
practice always does, restrict choice and control. At the 
time of the research none of the respondents lived in 
long‑term institutions. As such, the recollection of all 
events relating to such institutions had occurred in the 
past, many several decades earlier. The experiences 
described here should, therefore, not be taken to por‑
tray the current situation. When recounting such past 
experiences respondents spoke of lack of privacy, rigid‑
ity of daily routines and of power inequalities between 
staff and patients, which sometimes resulted in acts of 
violence and abuse.

When recalling their time in long‑term care facilities, 
many respondents focused on the lack of privacy and 
constant staff surveillance:

“What bothered me personally was that everything personal 
is documented. […] Did she have a male visitor? Did she have 
a female visitor? What time did the person come? What was 
the content of the conversation?”

(Woman, 49, Germany)

“Because it’s like Victorian, ‘put them in there and they’ll be 
safe’, but you’re not safe. Staff watch you when you’re going 
for a bath. Especially the men. They come out with things 
you don’t want to hear [and make vulgar comments about 
your body].”

(Man, 64, United Kingdom)

“It was okay for sending letters. But as for the phone, we 
had to give our mobiles directly to the office for the week as 
soon as we arrived on Monday morning. We were allowed to 
check them once or twice a week. If our parents wanted to 
call us, they needed to dial the number of the IMPro (special 
school) directly.”

(France)

Respondents  also  mentioned  that  rigid  schedules 
restricted their choices.

Choice and control: the right to independent living

“A disabled person can work anywhere and do any job he 
is capable of, [...] a disabled person cannot live on LVL 75 
(€105), completely impossible.”

(Man, 30, Latvia)

“[…] I have HUF 20,300 (€68) family support, my salary is 
HUF 47,000 (€157), I could not pay for a flat from that amount 
of money and besides the rent I also have to pay the bills, 
I also have to live on something, pay for clothes and all that.”

(Woman, 30, Hungary)

Concern was also expressed that austerity measures 
taken in the context of the economic crisis can threaten 
the trend of increasing support for community living and 
choice and control, by, for instance, restricting eligibility 
for social support. According to respondents in Bulgaria 
and Hungary, many families do not have the financial 
resources to pay fees for integration services provided 
privately, for instance in day centres.

Financial constraints also had an impact on choice and 
actual participation in social activities. Respondents in 
Romania, for instance, claimed that they wanted to have 
friends and spend more time out, but this depended on 
whether their family could afford it. Other respondents 
said that lack of money effectively kept people at home. 
In the United Kingdom, respondents valued leisure ser‑
vices highly, but for many the cost of participation was 
a barrier, especially when it was necessary to pay for 
the costs of support staff.

“This is the second major lot of cuts that we’ve had in the 
last four years. So whereas we had quite a few groups 
doing social activities, there’s barely any now that go out 
and go to the cinema and go to the theatre or whatever […]. 
Doing social things has come to a halt.”

(Man, 40, United Kingdom)

Respondents also noted the effects of the financial cuts 
on support measures for employment:

“They told me we are sorry but we have come into hard 
times and you cannot work here anymore.”

(Man, 28, Bulgaria)

The  impact  of  austerity  measures  is  deeply  felt  by 
persons with disabilities. The European Disability Forum, 
an umbrella organisation for persons with disabilities, 
developed a Crisis Observatory87 to collect examples of 
measures taken by EU Member States, EU institutions 
and international financial institutions. Respondents, 
for example in the United Kingdom, argued that cuts in 
services may jeopardise progress made in the direction 
of choice and control.

87  More information is available at: www.edf‑feph.org/Page_

Generale.asp?DocID=13854&thebloc=13856.

3838

Experiences of persons with intellectual disabilities

Interviewer: “Could you come and go as you wanted?”

Woman: “You had to be there at breakfast, dinner and tea 
and supper. You had to be – you couldn’t have a lie‑in unless 
you were ill, could you?”

Man: “You couldn’t have a lie‑in. No, you couldn’t have 
a lie‑in.”

Woman: “You weren’t allowed to have a key to each other’s 
rooms.”

(Married woman and man, 59 and 72, United Kingdom)

“I am supposed to be there at around 7 p.m. as otherwise 
they would not give me my dinner.”

(Man, 21, Bulgaria)

“We have what is served or nothing […] and this 
bothers me.”

(Woman, 52, Greece)

Respondents said that institutions affected the staff 
working there as well. They pointed to the social dis‑
tance imposed between staff and residents, the divi‑
sions between ‘them’ and ‘us’. Social workers applied 
control and punishment, they said.

“She has power, she gets access to the medication, she is 
a nurse, she has power. She comes to her shift, she poisons 
everyone, they sleep all day, she has peace, she can do the 
jobs she does at home.”

(Man, 34, Latvia)

Some of the respondents who had lived in institutions 
had performed a lot of work while living there, an expe‑
rience shared, for instance, by three Bulgarian women 
who used to live together in an institution. All of them 
recounted that they had helped the staff clean floors, 
serve food in the canteen, and bathe and change the 
bed sheets of bedridden residents, commonly without 
pay, and that this is why staff treated them well. Other 
respondents, however, had negative experiences with 
the work they were assigned:

“In the summer we had to do some job every day. 
The director would line us all up and assign us to groups to 
do jobs[…].I said to the nurse that I had a hernia again, and 
she started criticising those teachers and the director, saying 
to me ‘why do they make you do that? If he [the director] 
had a hernia, he would not be made to do any heavy work.’ 
But [the director] replied – cut out the laziness, you have to 
learn about life.”

Man: “It was like they would talk down to you.”

(Man, 30, Latvia)

Woman: “Didn’t like it.”

Man: “They would make you call them by their last name. 
You weren’t allowed to use their first name.”

Man: “Yes. [...] One of the social workers, I called him John. 
And he said ‘get out’. He said that!”

(Married woman and man, 59 and 72, United Kingdom)

“The home was very structured and if it didn’t go according 
to their wishes, if I didn’t follow them to the letter, then 
there were certain punishments.”

(Germany)

Some respondents also described instances of violence 
and abuse:

“He did not like it when we went to the hill and slid down it, 
little kids we were. We came back and our pants were wet. 
He put me on the table and used the clothes iron.”

(Man, 36, Latvia)

The  experiences  of  a  highly  regimented  life  in  an 
institution can have a long‑lasting impact. A woman 
respondent  said  that  even  when  her  partner  is  in 
his own home he still asks for permission to do the 
simplest things:

“A lot of things that are really normal for me aren’t normal 
for him; he doesn’t have to ask if he can have a Coke – it’s 
in his fridge.”

(Woman, Germany)

Bullying, harassment and abuse

Respondents  recalled  various  forms  of  bullying, 
harassment and abuse, particularly during periods spent 
in institutional settings. Most such cases took place at 
child care institutions such as boarding schools and 
long‑term social care centres. Respondents, however, 
also spoke about current experiences of mistreatment:

Respondents also spoke of medication used to control 
violent behaviour but also simply to make the staff’s 
work easier:

“I often get insulted. I mean, somebody in the street may 
come up to me and start laughing at me for no reason. And 
they may also say four letter words to me. I don’t want to 
repeat them.”

“Say you got in a fight with somebody, well they used to 
give you the needle to put you to sleep.”

(Woman, 21, Romania)

(Man, 59, United Kingdom)

3939

Choice and control: the right to independent living

“The other morning when I was going for a walk a man 
called me a spaz. Then he ran off. That’s not very nice, is it?”

Promising practice

(Man, 72, United Kingdom)

“When I’m on the bus […] just [like] normal people. 
When I stand there or sit there perfectly normally, the 
‘normal’ people say: ‘Disabled! Disabled!’, and it really gets 
on my nerves. I almost wanted to get up and ask them what 
they’ve got against disabled people, but then I didn’t have 
the guts but I will do next time.”

(Man, 39, Germany)

Respondents said that bullying and harassment also 
occurred in their neighbourhoods, where a victim is 
daily  exposed  to  the  perpetrators.  In  Bulgaria,  one 
respondent recounted how his neighbours filmed him 
then  uploaded  the  short  video  to  the  internet.  His 
mother filed a complaint against the perpetrators, only 
to discover later that the video had been uploaded to 
many websites. Stakeholders in Greece noted, in con‑
trast, that the situation at local level tended to improve 
with other residents becoming more supportive over 
time, but that, in general, persons with intellectual dis‑
abilities still face open ridicule, verbal insults and even 
physical attacks.

Some respondents also experienced hostility within 
their own families. A 21‑year‑old Romanian respon‑
dent recalled how her father and sister had verbally 
abused her.

Respondents also spoke of incidents beyond verbal 
abuse. In the United Kingdom, respondents recounted 
incidents in which people made silent phone calls, set 
a front door on fire, hurled paint and eggs at windows, 
broke into homes smashing up furniture and, in one 
instance, launched a physical attack:

Inquiring into disability‑related 
harassment

inquiry 

launched  an 

The  United  Kingdom  Equality  and  Human  Rights 
Commission 
into  public 
authorities’ actions to eliminate disability‑related 
harassment  and  its  causes,  finding  that  for 
many  people  with  disabilities,  harassment  is 
a  commonplace  experience.  The  results  of  the 
inquiry,  published  in  September  2011  in  a  report 
entitled  Hidden  in  plain  sight,  said  that  this 
harassment  takes  different  forms, 
including 
bullying, cyber‑bullying, physical violence, sexual 
harassment  and  assault,  domestic  violence, 
financial  exploitation  and  institutional  abuse. 
Harassment  is,  however,  often  not  reported. 
This  may  be  because:  people  with  disabilities 
do  not  know  who  to  report  it  to;  they  fear  the 
consequences of reporting; or they are concerned 
that  police  or  other  authorities  will  not  believe 
their account.

The inquiry highlights the need for additional data 
to  be  collected  on  the  issue,  as  well  as  making 
a  number  of  recommendations  for  how  public 
authorities  could  improve  their  performance  in 
preventing  and  dealing  with  disability‑related 
harassment.  A  ‘manifesto  for  change’,  outlining 
the 
commitments  public  authorities  have 
made  and  the  outcomes  they  aim  to  achieve,  is 
scheduled for publication.

For more information, see: Equality and Human Rights 
Commission (2011) Hidden in plain sight: inquiry into 
disability‑related harassment, Manchester, Equality 
and Human Rights Commission, available at: www.
equalityhumanrights.com/uploaded_files/disabilityfi/ehrc_
hidden_in_plain_sight_3.pdf

“It was this bloke and his girlfriend. They had sticks and they 
broke the door down and they just beat me up.”

difficulties in accessing justice

(Woman, 45, United Kingdom)

4040

Overall, the number of respondents who had formally 
complained against unfair treatment was in general low 
among those with intellectual disabilities. In the United 
Kingdom, though, most of the respondents had made 
official complaints about their treatment in a wide range 
of situations.

Most respondents said that the reason they refrained 
from complaining was the fear of retribution and most of 
those who had lived in institutions and had experienced 
unfair treatment never brought formal complaints:

“Well, to complain is to […]. It just means things will be worse 
for me.”

(Woman, 31, Latvia)

“I would be too afraid.”

(Woman, 32, Romania)

Experiences of persons with intellectual disabilities

“I know lots [of places to lodge a complaint] […] but I’m 
always scared they’ll find out and then not stand by me.”

(Germany)

“The manager of the guy who was running the residential 
home came and gave me a talk and told me that complaints 
were a threat, and they warned me not to do that again.”

(Man, 54, United Kingdom)

Some of the respondents also feared that they would 
not be taken seriously:

“What is the use in complaining? He [the director of an 
institution] would just say it is your own fault!”

(Woman, 41, Latvia)

Respondents  also  reported  bad  experiences  when 
trying to secure help from law enforcement officials 
and the justice system. A young man from a small town 
in Latvia went to the police after a dispute with his 
relatives but felt the police made no effort to help him. 
When he returned to the police station to sign the nec‑
essary documents, an officer made him sign without 
letting him first read them or his brother, his support 
person, take part in the conversation. Later, the police‑
man warned him not to return to the police station. The 
policeman, the man said: “threatened to take me to the 
psychiatric hospital.”

“[The policeman said] ‘Did you not do it?’ ‘Did you not 
break your own window? Or chuck paint and eggs at your 
window?’ You must be joking! And that’s how they treat you, 
because you have a learning difficulty. They have no respect 
for us. And sometimes some police say: ‘You shouldn’t be 
out here. You should still be locked up.’”

(Man, 63, United Kingdom)

Some respondents said that they had tried to complain 
but received no response:

“I went and complained before the national Ombudsman, 
the Parliament, the President and the Ministry of Labour 
and Social Policy many times but there was no reply from 
anywhere. No one cares for the people who live in homes.”

(Man, 32, Bulgaria)

In Latvia, a woman turned to the media to complain 
about her mistreatment and succeeded in having the 
director of an institution dismissed:

“It was hard to get him out of his chair. I had to fight for 
about a year. I wrote letters all the time. I only got to bed 
at midnight.”

(Woman, 46, Latvia)

An important barrier to obtaining redress was lack of 
awareness about complaints procedures combined with 

lack of formal support. In Bulgaria, according to one of 
the stakeholders, a lawyer with the Bulgarian Helsinki 
Committee, the low number of complaints can be attrib‑
uted to the lack of self‑advocacy organisations that 
could raise rights awareness. In her view, persons with 
intellectual disabilities are mainly supported by carers, 
often family members, who are less willing to assist in 
lodging a complaint. In Hungary, stakeholders said that 
there were many developed advocacy groups for per‑
sons with intellectual disabilities. The only respondents 
in Hungary who could name the institutions to turn to 
for redress in cases of bad or unfair treatment were part 
of such self‑assertiveness groups.

In the United Kingdom, all the respondents who had 
lodged complaints said that support to do so was essen‑
tial. The need for support was echoed by a respond‑
ent in Sweden, who explained how his parents and 
self‑advocacy group supported him in appealing a ruling 
on an unsuccessful complaint against his local authority 
at the District Court. Research respondents in Sweden, 
some of whom had brought complaints to authorities 
and the courts, spoke of lack of awareness concerning 
organisations that can help in seeking redress and of the 
scarce information on the operation of support services 
and the welfare system.

summary

While there were important differences between the 
experiences of respondents from different countries 
in some areas, there were common themes that cut 
across all countries. Research respondents spoke, for 
instance, of limited access to regular community life 
and independent living. Many lived in community set‑
tings that still engaged in characteristic institutional 
practices. Most were educated in segregated schools 
or programmes and some faced barriers in establishing 
their own families and gaining access to the regular 
labour market.

Those respondents who had experienced large‑scale 
institutions  at  some  point  in  their  past  were  over‑
whelmingly negative, especially if they had been placed 
there involuntarily. They complained of lack of choice 
in their everyday lives, little or no privacy, a prohibition 
on intimate relationships, a lack of information, staff’s 
humiliating treatment as well as occasional violence 
and abuse.

Many  people  with  intellectual  disabilities  who 
participated in this research found it difficult or impos‑
sible to make decisions about large and small aspects of 
their lives. While in some countries they could benefit 
from elaborate systems supporting decision making, in 
others no such support schemes were reported to be in 

4141

Choice and control: the right to independent living

place. With many fundamental aspects of life, as well as 
with small issues of daily living, the respondents often 
had limited or no choices.

Experiences varied widely with regard to access to 
justice, but many respondents reported victimisation, 
discrimination, harassment, bullying and abuse which 
they found difficult to challenge. Access to justice was 
limited not least because many did not know about 
their rights, did not know how or with whom to file 
complaints or feared that complaints would worsen 
their situation.

Findings from the field research in the nine countries 
show that there is a wide gap between the lived eve‑
ryday  experiences  of  people  with  intellectual  dis‑
abilities in Europe and the demands of the CRPD. The 
results show that although the transition towards more 
independent living has begun, much remains to be 
done. Respondents described how their lives are still 
restricted, but also how they are gradually transformed 
as they achieve more choice and control over their lives.

Deinstitutionalisation is a key element in this process 
and much has been achieved, although varying degrees 
of progress mean that the options available to people 
with intellectual disabilities for living in the community 
in the countries covered by the research differ consider‑
ably. Despite progress, lack of choice and control over 
where and with whom to live remains a significant prob‑
lem. Although most EU Member States have officially 
embarked upon programmes of deinstitutionalisation, 
the alternative housing and support options for liv‑
ing in the community that are on offer remain limited. 
Furthermore, many people with intellectual disabilities 
cannot find adequately paid employment and lack the 
financial resources that would allow them to live inde‑
pendently in their own home, as many of them desire.

An important component of independent living is the 
ability to participate in public and political life through 
voting and through active involvement in peer support 
and self‑advocacy organisations. Respondents spoke of 
a lack of political awareness and of the inaccessibility of 
political processes. They highlighted the contribution of 
self‑advocacy organisations in supporting the political 
involvement of people with intellectual disabilities and 
their communication with public authorities, as well as 
in advocating for their voices to be heard in policy and 
decision making.

Administrative barriers also curtail individuals’ scope to 
make choices about their lives. Complex and changing 
rules and regulations serve to alter people’s eligibility 
for benefits and limit their freedom to move to a new 
town or city without losing their support services, while 
inaccessible information reduces awareness of enti‑
tlements and administrative processes. Similarly, the 
failure of legal systems to adapt to the needs of peo‑
ple with intellectual disabilities means that recourse 
to justice in cases of maltreatment remains rare. The 
lack of legal support and fear of not being believed or 
prompting retribution further restrict access to justice.

Finally, both respondents and stakeholders expressed 
concern about the impact of austerity measures taken 
in the current economic climate that may impact on 
their opportunities to live independently. Participants 
were also concerned about the effect public spending 
cuts can have on self‑advocacy groups and other civil 
society‑led support measures.

4242

2�

experiences of persons  
with mental health problems

This chapter explores some of the complexities people 
with mental health problems experience in connection 
with living independently and being included in the 
mainstream community.

teenagers  or  young  adults.  Although  the  research 
focused on their current experiences as adults, some 
respondents  also  reflected  on  earlier  experiences 
when relevant.

There were a total of 115 people with mental health 
problems  interviewed  in  this  study  (see  Table  2.1). 
Roughly half of the respondents (58 out of 115) were 
between 26 and 45 years old and the majority of the 
interviewees were women (61 v. 54 men). The larg‑
est number of interviewees came from Romania (21), 
followed by France (16) and Greece (15). The smallest 
number came from Hungary (eight) and Sweden (nine). 
More details regarding the sample composition at the 
national level can be found in Annex 1 of this report.

Almost all of the research respondents had been diag‑
nosed with mental health problems when they were 

2�1�  living arrangements

At the time of the interviews all research respondents 
lived either alone, with a spouse or partner, with par‑
ents or other relatives or they lived in group homes. 
None of the respondents were homeless at the time 
of the interviews, but Hungarian and French respond‑
ents reported having lived on the streets in the past. 
Some respondents had in the past also lived for longer 
or shorter periods in psychiatric hospitals and some 
expected to return there.

table 2�1: respondents with mental health problems, by country, age and gender

Country

No. of 
interviewees

Men

Women

Age < 25 26‑45 46‑65

>66

Total

Age < 25

26‑45 46‑65

>66

Total

BG

DE

EL

FR

HU

LV

RO

SE

UK

10

12

15

16

8

12

21

9

12

Total

115

Source: FRA, 2011

0

0

0

0

0

2

0

0

0

3

2

4

1

1

0

5

5

3

2

4

4

6

1

2

2

1

1

0

2

0

0

0

2

0

0

1

5

8

8

7

2

6

7

6

5

54

0

0

0

0

0

1

2

1

0

2

2

5

6

6

3

11

0

5

3

2

2

3

0

2

1

2

2

0

0

0

0

0

0

0

0

0

5

4

7

9

6

6

14

3

7

61

43

Choice and control: the right to independent living

Experiences  of  making  choices  on  where  and  with 
whom  to  live  and  their  living  arrangements  varied 
among respondents in different countries. Financial 
status was a critical factor determining the type of 
living arrangements, which, in turn, directly affected 
respondents’ scope for decision‑making in other areas 
of their lives.

Some respondents living with their parents or spouses 
said that their families could be a source of support. 
Others felt, however, that their own decisions were 
overridden by their families or they had conflicts with 
them, and some even felt that their families contrib‑
uted to their mental health problems. As a result, many 
respondents expressed a wish for further independence 
from their families, although economic difficulties pre‑
vented them from moving out on their own.

living alone, with a spouse or with 
a partner

In France, Germany, Sweden and the United Kingdom 
most  respondents  lived  alone  or  with  a  spouse  or 
partner. The opportunity to set up one’s own home 
was greatly valued and was directly associated with 
increased freedom. In the words of one woman:

“It is a totally different thing when I have my own space, my 
own home.”

(Woman, 25, Latvia)

Many respondents had come to own an apartment as 
a result of inheritance or parental support and feared 
that losing it could mean returning to an institution:

“It is good for me that I have the house. If they took the 
house away, I would go to the social care institution, because 
I do not have anything else. I am so used to it, I feel good 
at home. I have things to do, I have my own garden. [...] So 
I think that people need a place of their own if they are able 
in any way to take care of it, they need their own home 
rather than a place in the institution.”

(Woman, 53, Latvia)

Promising practice

Supporting housing searches

The  urban  community  of  Lille,  France,  published 
a  guide  to  inform  all  authorities  involved  in 
housing  programmes  about  aspects  to  consider 
in  relation  to  the  accommodation  of  persons 
with mental health problems. The guide presents 
information  on  the  different  types  of  housing  in 
the area, on how to find financial support and on 
access to care and mental health services.

For more information, see: Lille Métropole Communauté 
Urbaine (2010) Guide Habitat ‑ santé mentale – Lille 
Métropole.Logement, hébergement et accompagnement 
des personnes en difficulté psychique, Lille Métropole 
Communauté Urbaine, Agence Régionale de l’Hospitalisation 
Nord‑Pas de Calais

living with parents or relatives

The proportion of respondents who lived with their 
parents or siblings varied significantly. In Sweden and 
the United Kingdom, for instance, none of them did, 
while in Bulgaria, Greece, Hungary, Latvia and Romania 
more than half of the respondents continued to live 
with their parents or other family members well into 
adulthood. In many cases, family members provided 
invaluable support for daily life both in terms of facili‑
tating access to goods, services and leisure activities, 
and in providing emotional support. Some respondents 
were happy living with their families:

“It is my choice to live with my parents. I don’t feel […] 
overwhelmed by them. I don’t feel ready to live on my own.”

(Woman, 31, Greece)

Living with family members was not always a matter 
of  choice.  Hungarian  respondents  emphasised  that 
living with parents or with family members was the 
only option available to them, even if relationships 
were strained, in the absence of any viable alterna‑
tive apart from a social care home. Some respondents 
described difficult relationships with family members, 
with relatives sometimes showing prejudice and a lack 
of understanding:

4444

“When I lived together with my family, I always had 
arguments with my mother, because my way of thinking is 
totally different and she never accepted my point of view. 
My brother used to call me a sicko, an idiot [...] – he thinks 
I am completely ill. [...] When I did something at home 
which someone else did not like they would say ‘take your 
medication’ – that kind of attitude […] all the time.”

(Woman, 25, Latvia)

Although many respondents saw family support as 
critically  important,  some,  particularly  in  Bulgaria, 
Greece, Hungary and Latvia expressed a wish for fur‑
ther independence from their families. But the limited 
number  of  places  in  group  homes  or  other  service 
accommodation, difficulties in securing support with 
independent living and/or lack of financial resources 
prevented them from living on their own.

living in group homes

The term ‘group home’ refers to a variety of living 
arrangements  usually  in  an  apartment  or  other 
small‑scale housing. They clearly differ from ‘social care 
homes’ in that they are smaller in scale and generally 
more oriented towards enabling residents to have more 
choice and control over daily living. Typically, resident 
support services are available and people needing simi‑
lar types of support tend to be grouped together to live 
in these establishments. The respondents referred to 
such settings in different ways, for instance in Bulgaria 
as ‘protected homes’, in Sweden as ‘serviced apart‑
ments’, in Latvia as ‘group apartments’, in Hungary as 
‘residential homes’ or in Greece as ‘protected apart‑
ments’. At the time of this research several respondents 
lived in such accommodation in Greece, and, fewer, in 
Hungary, Latvia and the United Kingdom. Others had 
prior experience of living in group homes but had sub‑
sequently moved into other accommodation.

Group  homes  triggered  mixed  reactions.  Some 
respondents considered them as an opportunity to 
break away from situations of greater dependency 
either in institutions or with their families. However, 
a number of respondents argued that they do not offer 
enough choice and control. Some stakeholders were 
also critical of the conditions required by group homes. 
In Sweden, for instance, representatives of user organi‑
sations said that in some cases residence at the group 
home was conditional on taking prescribed medications.

Those respondents who spoke in positive terms about 
their life in group homes regarded themselves as fortu‑
nate to have been given the opportunity to live there:

Experiences of persons with mental health problems 

“Come and see my room. I like it here. I have everything – 
here is my bed, my bear, my clothes, my cosmetics. Here is 
our day room, we have TV sets and we can listen to music on 
this tape recorder.”

(Woman, 34, Bulgaria)

One respondent who had moved there with her husband 
from a social care home characterised the difference 
between the social care home and the group home as:

“Night and day.”

(Woman, 47, Latvia)

A 30‑year‑old Hungarian woman who had previously 
lived with her parents appreciated the independence 
she gained. Others were also satisfied:

“It was good that I could live there, that they cooked for me 
and did my room for me. My mother gave me money, I had 
a car and I could do what I wanted.”

(Man, 52, Germany)

Many respondents commented, however, on the limited 
availability of supported living arrangements, such as 
group homes or half‑way houses, a transitional form of 
residential facility. Stakeholders in Sweden argued that 
persons with mental health problems tended to have to 
wait longer than others, for instance than persons with 
intellectual disabilities, for this type of accommodation 
and that they were more likely to be placed in outlying 
areas distant from city centres. The Greek stakehold‑
ers stressed that community‑based accommodation 
options are only available to people who had been 
treated in psychiatric hospitals.

“A lot of people were in line. They considered your age, and 
I would never have gotten out if X and I had not married 
before that.”

(Woman, 47, Latvia)

experiences in psychiatric hospitals 
and institutions88

Deinstitutionalisation  programmes  are  under 
implementation across the EU with varying degrees 
of success. In France, Greece, Latvia, Romania and the 
United Kingdom more than half of the research respond‑
ents with mental health problems had lived or had been 
treated in an institution, mostly psychiatric hospitals, 
but also, in Germany and Latvia, in social care homes. 
Respondents had also experienced involuntary hospital 

88  Many of the respondents identified diverse forms 

of residential facilities – including boarding schools, 
orphanages, small and large community living facilities, and 
various other forms of residential facilities – as institutions 
and described how many of these places had institutional 
characteristics and practices regardless of the size or number 
of people living there.

4545

Choice and control: the right to independent living

placement, which in most cases they experienced as 
frightening  and  unhelpful.89  Admission  and  stay  in 
residential hospital care were experienced more posi‑
tively when respondents had choice and control over 
the procedure.

A number of respondents noted improvements in the 
infrastructure and sometimes also in the regimes within 
institutions in recent years.90 A 50‑year‑old woman with 
recent experience of a psychiatric clinic in Germany said: 
“I liked it in the ward I went to.” Some respondents also 
highlighted good and productive relations with staff. In 
Latvia, for instance, hospital staff actively assisted one 
of the respondents to recover his legal capacity by con‑
tacting an advocacy organisation and an attorney. Once 
he had regained his legal capacity, the man was able 
to choose to leave the hospital and move into a group 
apartment. Good interaction with staff underlies the 
positive experience of a four‑month stay in hospital 
described by a British woman:

“There wasn’t anything scary. Everybody seemed really nice. 
People were always having conversations with you or other 
people in the same predicament. And there were visitors 
coming in and everybody seemed really friendly.”

(Woman, 43, United Kingdom)

Other  respondents,  however,  opposed  living  in  an 
institution:

“The first floor is a joy. There are birds, there is 
a conservatory. It is nice to relax there. But I still do not 
want to go there. I want to avoid that place. I want to forget 
everything that happened.”

(Woman, 40, Latvia)

“Residential homes, the way the people live in homes, 
scary, oppressive and sometimes even, it makes me angry, 
it makes me want to scream, the conditions there and that 
would be the last way I’d want to live.”

(Woman, 52, Germany)

Furthermore, respondents argued that improvements 
have not occurred across the board and there is still 
considerable  variation  between  and  even  within 
establishments:

89  The issue of involuntary placement and involuntary 

treatment is discussed in FRA (2012).

90  The timeframes mentioned varied, e.g., 20 years was 
mentioned in the United Kingdom, whereas in Latvia 
respondents said that improvements started in 2000.

4646

“So you can go in one ward in one place and it’s actually 
fairly pleasant, everything’s clean, people are in distress but 
it’s managed and they’ve got their own space, and there’s 
privacy and dignity. [...] and then you’ll go on another ward 
in another place and it is bedlam. You don’t get a sense that 
anybody is in control there; that anybody’s being helped; 
there are people in distress who are not being catered for 
and actually a very unsafe environment. You can go in 
the same hospital site and go in two different wards and 
it can be completely different and yet they’re physically 
mirror‑wise the same.”

(Woman, 46, United Kingdom)

2�2�  daily living

The  experiences  of  participants  across  the  nine  EU 
Member States revealed problems in accessing general 
services and specialised community services either due 
to discrimination or due to the lack of good networks of 
financially accessible services. While most respondents 
had received mainstream education, disruption to their 
studies and a lack of reasonable accommodation were 
mentioned. Employment was of the utmost importance 
to all respondents, but many felt discriminated against 
and trapped in a system of welfare benefits that was 
not conducive to active participation in the open labour 
market. Lack of employment and dependence on wel‑
fare benefits or family income made for a precarious 
financial situation that, in turn, prevented them from 
participating in community life.

education

Most respondents had experienced general mainstream 
education and finished secondary school. While in some 
cases they held university degrees, they reported hav‑
ing their first symptoms of mental health problems in 
their teenage years, coinciding in some cases with their 
university education.

Two experiences related to education were commonly 
reported  by  respondents:  first,  bullying  by  either 
classmates or teachers in school and second, disrup‑
tion of secondary and university education due to epi‑
sodes of mental health problems. Secondary school 
was described as a difficult period by respondents in 
Greece, Latvia, Romania, Sweden and the United King‑
dom, where half of the respondents said they had been 
bullied. Several respondents described how they felt 
unable to protect themselves or to ask for help from 
their teachers or parents:

“I heard them speaking about me as a crazy person but I was 
proud somehow and shy at the same time and did not say 
anything to my parents.”

(Man, 43, Bulgaria)

Experiences of persons with mental health problems 

“I had my first anxiety attack when I was 17. I was extremely 
inhibited and I could not talk to teachers and classmates. 
Finally, I went to the headmaster’s office, banged my school 
books on his desk and said, ‘I quit!’”

(Woman, 46, Sweden)

Respondents in Bulgaria and Romania faced particular 
difficulties in continuing education after their first crisis 
and treatment either because of the demands of treat‑
ment or because the school failed to accommodate their 
needs. In Romania, two‑thirds of the respondents had 
completed secondary education and/or had done two 
or three years of university, but only one had a uni‑
versity degree.

“They applied electroconvulsive shocks to me. I could not 
continue high school. My relatives moved me to an evening 
form of education. But I was very frequently in hospital and 
did not like the school very much.”

(Woman, 48, Bulgaria)

“My mother and my stepfather moved me to another high 
school in S. after the first crisis. I had to take exams, like 
entry exams, to be enrolled in it. Later on I had lower marks 
at school but still enough to be admitted to university.”

(Woman, 29, Bulgaria)

“If I’d got my diagnoses earlier, staff in school would have 
known better about my disability and it would have been 
easier for me to adjust. […] School staff did not understand 
or attend to my needs.”

(Man, 31, Sweden)

As  with  earlier  schooling,  one  particular  challenge 
was the failure of authorities to account for the fluc‑
tuating nature of mental ill health. One woman in the 
United Kingdom complained about being required to 
pay for one academic year again although she had 
missed a considerable amount of the previous one due 
to mental health problems. In Latvia, a woman reported 
a lack of available adjustments:

“I am disabled but [...] in reality they do not pry into your 
private life. [...] We are given assignments, you do them and 
whatever you do in your free time is your own business, 
regardless of your disability or social status. For a while 
I received a stipend that’s paid to disabled people or poor 
people or those with children. [...] The rules are the same 
for everyone, and I may not be able to study as diligently as 
someone without a disability, perhaps. All the students have 
to meet the requirements of the study programme, and the 
lecturer is not going to give you an easier time just because 
you have a disability.”

(Woman, 25, Latvia)

employment

As  mentioned  earlier  the  Equality  Employment 
Directive91 prohibits direct and indirect discrimination, 
as well as harassment and any instruction to discrimi‑
nate on grounds of disability, religion and belief, age and 
sexual orientation. It covers the fields of employment 
and occupation, vocational training and membership in 
employer and employee organisations. Article 5 of the 
directive asks employers to take appropriate measures 
to enable persons with disabilities to access, participate 
in, or advance in employment, or to undergo training, 
unless such measures would impose a disproportionate 
burden on employers (‘reasonable accommodation’). 
The 2010 FRA report The legal protection of persons with 
mental health problems under non‑discrimination law92 
provides a comparative legal analysis of the current 
situation showing that in almost all EU Member States 
non‑discrimination legislation protects persons with 
mental  health  problems,  who  also  benefit  in  most 
cases  from  reasonable  accommodation  measures 
in employment.

EU  Member  States  have  implemented  a  range  of 
initiatives to improve the employment rates of persons 
with mental health problems. In Sweden, for instance, 
labour market policies have specifically targeted peo‑
ple with mental health problems as one of the most 
disadvantaged in the labour market. Targeted initia‑
tives to raise employment levels include work intern‑
ships, subsidised positions, sheltered employment in 
the public sector, and special introductory and edu‑
cational support, including the provision of a support 
person through the Special Introductory and Educational 
Support Measures (Särskilt introduktions och utbildn‑
ingsstöd, SIUS). In 2009, 23 % of the new users of this 
programme were persons with mental health problems. 
Several Member States have also introduced manda‑
tory quotas for the employment of a minimum share 
of people with mental health problems in the private 
and public sector.93

Respondents in most countries had experience working 
in the open labour market although at the time of the 
research half were not employed and few were in paid 
employment. Respondents reported that they found 
working with other people and assisting people fulfill‑
ing. Most respondents agreed, however, that there are 
three key barriers to employment: discrimination; lack 
of reasonable accommodations or job adjustments; and 
lack of social support services to help them find and 
retain work. Given these difficulties, compounded by the 

91  Council Directive 2000/78/EC, OJ 2000 L 303.
92  FRA (2010).
93  See: www.nda.ie/cntmgmtnew.nsf/0/84AA79B029E870

AE8025729D0046CAED/$File/people_with_disabilities_in_ 
public_sector_04.htm.

4747

Choice and control: the right to independent living

economic crisis, most respondents were unemployed or 
had found only unstable and short‑term employment.

Most respondents employed in the open labour market 
were in Germany and Latvia, where a third of respond‑
ents had jobs at the time of the interviews, and in 
Hungary, where three out of eight respondents were 
employed. In France, two‑thirds had worked on the open 
labour market at some time during their working lives. 
In contrast, just one Romanian respondent reported 
such employment. Most of those who were employed, 
however, felt that their job did not provide them with 
a sufficient income. The proportion of respondents 
in  supported  employment  varied  considerably.  For 
instance, in Bulgaria, respondents worked part‑time 
in community day centres, while in Germany and Swe‑
den some respondents were in supported employment. 
In Greece, Hungary, Latvia, Romania, Sweden and the 
United Kingdom more than half of respondents said that 
they were unemployed. In the United Kingdom, more 
than half of respondents had tried to mitigate the lack 
of employment opportunities by working voluntarily, 
mostly in jobs connected to mental health.

Respondents  in  Hungary  spoke  of  problems  with 
employers who refused to hire people taking medica‑
tion for mental health problems – especially when the 
work involved contact with children or machinery.

“I started to work in an elementary school as a cleaner. 
After two weeks I had to go to a medical check‑up. The next 
day I went to work as usual and the boss wanted to see me. 
At first I thought there was a problem with my work, but he 
said that I did my job well, there were no complaints, but 
he still had to discharge me. I asked him why. I started to 
cry, which I felt awful about. He said that I was not allowed 
to work closely with kids while I was taking such strong 
medications. I have had the same problem in many other 
work places.”

(Woman, 27, Hungary)

To avoid discrimination and minimise the risk of unfair 
treatment, many respondents opt not to disclose their 
disability. A woman in Hungary, who had a job with 
a secure salary, attributes her success at work to the 
fact that she has not told anyone about her mental 
health problems:

“I really, really keep it as a secret, as a huge secret.”

Several  respondents  felt  that  lack  of  education 
contributed to their employment problems:

(Woman, 33, Hungary)

“What I am detecting is a degree of intellectual frustration 
because [mental health service users] have lost their chances 
of a good education and therefore a good, satisfying sort of 
workplace environment. And a lot of that comes from the 
fact that if you fall out of education at some point, always in 
the past you were treated with some disdain. You didn’t fall 
out because of emotional problems, but because you’re not 
good enough. Whereas I’m finding it’s just not true, I can see 
the evidence of that now.”

(Woman, 55, United Kingdom)

Others  complained  of  difficulties  in  obtaining  and 
retaining work because of discrimination:

“The public job advertisements at the Employment Agency 
Department contain the following information: ‘people 
assessed by medical commissions as people with reduced 
working capacity are allowed to apply’ and below this there 
is a statement that these people must not have a mental 
health problem.”

(Woman, 51, Bulgaria)

“I went to apply for a job in a restaurant. They saw me with 
my stick and asked me whether I broke my leg. I explained 
to them about my muscle problem. […] They told me to 
bring my medical assessment document to prove I [had] 
a disability. But when they saw in it that my main disability 
[was] a mental health problem, they said that they [were] 
sorry but would not hire me.”

(Man, 47, Bulgaria)

Other  respondents  highlighted  the  potential  risks 
involved in revealing a mental health problem:

“As soon as I disclosed [my mental health problem] my 
probationary period got doubled [..].and I got quite a lot of 
personal victimisation. [...] If I didn’t reply to an email straight 
away they’d be on the phone saying: ‘Why haven’t you – you 
need to be able to answer us at any point’. […] In the end […] 
I resigned.”

(Woman, 38, United Kingdom)

“I was working at a supermarket warehouse. I did not tell 
them I had a problem. They wouldn’t have recruited me if 
they had known. I panicked twice and had to be absent. 
My sister tried to make an excuse for me. However, after the 
second time I did not go back. What could I say? That I had 
a problem? They would ask me why I had not informed them 
in the first place. What could I say?”

(Man, 40, Greece)

If they do not report their needs, persons with disabilities 
cannot benefit from their entitlement to reasonable 
accommodation. Many respondents pointed to the need 
for adjustments on the parts of employers, in particular 
regarding flexible working hours or altered work tasks 
but said that in reality it was difficult to obtain them:

“I need half a shift, but unfortunately no one will give you 
one. It is impossible. If you want a half shift, then ‘get lost’. 
And if you don’t get lost, they offer you less official work and 
you get less money.”

(Woman, 40, Latvia)

4848

Experiences of persons with mental health problems 

“I’d like to go to work at some point. But I’m so scared of 
working full time [...] I’ve had to take time off work to get 
1.5 years’ therapy and that took me ages to fight for. If I was 
at work, I couldn’t take time off, people say you have flexible 
hours but realistically, all these things don’t work with [...] 
time off to see a doctor.”

(Woman, 32, United Kingdom)

“Voluntary work is a good option for people recovering from 
mental ill health and participation in paid employment is 
low because the system for getting back into work is very 
inflexible. […] However voluntary work, which has the role of 
rehabilitation now that most of those services have gone, is 
being affected by local authority spending cuts – many work 
in voluntary organisations which are being closed.”

Given  the  difficulty  of  obtaining  work  on  the  open 
labour  market,  some  respondents  worked  in  ‘shel‑
tered’ or ‘protected’ employment schemes. While the 
exact nature of sheltered workshops varies, the WHO 
describes sheltered employment as “[…] employment 
in separate facilities, either in sheltered businesses or 
in a segregated part of a regular enterprise […] intended 
for those who are perceived as unable to compete in 
the open labour market.”94 Such schemes may offer 
a useful mechanism for developing work‑based skills 
and confidence and introducing people into the labour 
market, but there is a risk that they operate away from 
mainstream society. Furthermore, being associated with 
a sheltered workshop can itself be a source of disad‑
vantage when attempting to find work on the open 
labour market:

“I said I’m at a workshop at the moment and I just wanted 
an internship to start with, but I noticed that that was it, and 
they just told me to come back later.”

(Woman, 44, Germany).

For many respondents voluntary unpaid jobs fulfilled 
the need for interaction with people and gave them 
a sense of purpose and of having contributed something 
of value to society:

“[…] those grey, flat weekdays, all the same, monotonous, 
that monotony, I do not know […] but it is pretty bad, so 
I would like to go to work somewhere to switch off, to be 
among people, because my illness is much worse if one is at 
home.”

(Woman, 36, Hungary)

“You can give as well as take and bring some joy to someone 
else. […] To live like you are useful to somebody else and 
yourself, to have meaning in life and understand what life is 
all about. To merely live like you just exist is not what living 
is about. To only think about eating and sleeping [...] and 
taking care of your other bodily functions. That’s not a life.”

(Woman, 47, Latvia)

(Stakeholder, United Kingdom)

Promising practice

Finding employment and being 
employed

Legislation  in  Greece  allows  people  with  mental 
health  problems  to  set  up  limited  liability  social 
cooperatives,  or  ‘KoiSPE’,  with  a  membership 
of  up  to:  35  %  of  people  with  mental  health 
problems;  45  %  of  mental  health  professionals; 
and up to 20 % of other individuals and sponsoring 
organisations. The cooperatives have independent 
legal  and  tax  status,  are  exempt  from  corporate 
taxes  excluding  value‑added  tax  (VAT)  and  can 
carry out any economic activity. As of March 2011, 
16  KoiSPE  were  in  operation,  employing  more 
than 200 people of whom 45 % were people with 
mental health problems living in the community.

Labour  market  programmes  to  assist  persons 
with  intellectual  disabilities  or  mental  health 
problems in Sweden include Special Introductory 
and  Educational  Support  Measures  (Särskilt 
introduktions  och  utbildningsstöd,  SIUS). 
In 
2009,  22  %  and  23  %  of  new  participants  in 
the  programme  were  persons  with  intellectual 
disabilities  or  with  mental  health  problems, 
respectively.

For more information on KoiSPE, see: European Commis‑
sion, Legal frameworks: A first step towards social and 
economic integration of the mentally ill. The EU social 
protection social inclusion process. Good practice article, 
available at: http://ec.europa.eu/social/BlobServlet?docId
=733&langId=en; and on the labour market programme in 
Sweden: Public Employment Service (Arbetsförmedlingen) 
(2010) Arbetsmarknadspolitiska program. Årsrapport 2009. 
Ure 2010:1, p. 122

general healthcare

For  most  respondents  living  in  the  community  the 
most important healthcare relationship was with their 
local general practitioners (GPs) who provided gen‑
eral healthcare but could also act as access points for 
additional services related to their mental health. The 
respondents’ experiences varied significantly in terms 
of how they were treated by their GPs and the types of 
services that they were able to access through them. 
In the United Kingdom, for instance, the success of 
interaction with the GP was seen as directly related 
to whether or not the GP had had special training on 
mental health issues:

94  WHO (2011), p. 242.

4949

Choice and control: the right to independent living

“At the moment I have an excellent GP who is 
psychotherapy‑GP trained so he’s a real diamond.”

(Woman, 55, United Kingdom)

A  recurrent  theme  in  the  interviews  was  the  GPs’ 
attitudes to persons with mental health problems:

“They (the medical profession) must not be afraid of persons 
with mental health problems, we are not dangerous.”

(Man, 42, Sweden)

Respondents  commonly  experienced  ‘diagnostic 
overshadowing’95  when  healthcare  staff  attributed 
physical illnesses or problems to their mental health 
problems and consequently did not take them seriously:

“As soon as my blood pressure rises, there must be 
something wrong with my psyche, even if I have had 
bronchitis. [The GP] looks for indications, after all.”

(Woman, Latvia)

“My family doctor did not take me seriously when I talked 
about my physical complaints.”

(Man, 42, Sweden)

Respondents  in  Hungary  and  Latvia,  for  instance, 
complained that when general health services identi‑
fied someone as having a mental health problem they 
were often referred to a psychiatric hospital without 
providing the services they originally sought:

“It really is like there is a mark on you. No matter whether 
you have a headache or your blood pressure is up, the 
solution is to take you to Tvaika Street [Riga Psychiatric 
hospital]! End of story. The doctor thinks you have 
a temperature because you imagined it yourself, so your 
heart starts beating faster and you get hotter.”

(Woman, Latvia)

Respondents complained, for instance in Hungary, that 
psychiatric hospitals did not pay attention to physical 
ailments either:

“I mentioned a couple of times during the ward rounds 
that my leg was sore, because I could not even stand. They 
took my medication that I had brought to the hospital, e.g. 
medication for heart disease, diuretics. They had not given 
me these pills for a week; of course I had pain in my leg. 
When I told the doctor during the ward round that I could 
not do anything and was in pain, that I missed the diuretic, 
the doctor told me that this was a psychiatric unit and not 
a hospital for internal diseases.”

(Woman, 27, Hungary)

Respondents  in  Romania  said  that  when  they  had 
a general health problem they were either referred to 
another specialist or they were prescribed medication 
which had been given to them while in a psychiatric hos‑
pital, where they had access only to psychiatric drugs.

Another issue identified by respondents was the lack of 
thorough information about their diagnosis, medication 
and potential side effects. Some respondents argued 
that they had not received thorough information from 
either mental health specialists or GPs. They mentioned 
instances where medication was prescribed without any 
explanation of how to take it or where little information 
was provided about the progress of their treatment and 
little opportunity given for follow‑up consultations.

In Greece, respondents reported positive experiences in 
regard to the general healthcare they received while in 
institutions. They referred to healthcare services as an 
integral part of the treatment they received with regular 
general check‑ups and access to dental and ophthalmo‑
logical services. Nevertheless, they also said that they 
would like to be better informed about their medication 
and its effects before being treated.

Community‑based health services

A variety of community‑based health services had been 
accessed in some form or other by most respondents. 
In Bulgaria all respondents said that they needed more 
such community services, while in Hungary, Sweden 
and the United Kingdom a lack of access to these ser‑
vices was mentioned. In Latvia, the respondents said 
the only specialised community‑based care service for 
people with mental health problems is outpatient visits 
to psychiatrists. Generally respondents reported a pref‑
erence for ‘talking therapies’.96

“A psychotherapist. That is essential. That is the main thing, 
so I can get all my worries off my chest, because some little 
thing can knock me over, some feeling or thought.”

(Woman, 40, Latvia)

According  to  respondents  access  to  this  type  of 
psychotherapy was often not easy, as they were not 
always available as part of the health system. In Latvia 
and Romania, for instance, access to such therapies 
was made available, on a limited basis, through NGOs. 
In the United Kingdom some respondents said that 
certain community‑based services offered alternative 
therapies  to  medication,  such  as  relaxation  and 
anxiety management.

95  More information on ‘diagnostic overshadowing’ in 

Thornicroft, G., Rose, D., Kassam, A. (2007) ‘Discrimination in 
health care against people with mental illness’, International 
Review of Psychiatry, 19(2):113‑22, available at: www.ncbi.
nlm.nih.gov/pubmed/17464789.

96  For more information, see www.nhs.uk/Conditions/

Counselling/Pages/Talking‑therapies.aspx.

5050

Experiences of persons with mental health problems 

There was recognition particularly among stakeholders 
of the important role played by these centres and the 
services they offered and of the importance of devel‑
oping flexible approaches which catered for the needs 
of people at evenings and weekends as well as during 
normal working hours. In the words of the director of 
a day centre in Bulgaria, echoed by Greek stakeholders:

“We do not integrate our clients into the society as the 
design of […] services such as the day‑care centre requires 
that the client comes into our building in the morning and 
goes home in the evening. We need flexible services which 
would allow [us to meet] the individual needs of the clients.”

(Stakeholder, Bulgaria)

In  this  light,  stakeholders  in  Bulgaria  and  in  Latvia 
expressed  concern  about  recent  large  investments 
on the renovation of psychiatric hospitals but not on 
developing community‑based support services and 
structures. The European Commission’s proposal for 
pre‑conditions for receiving EU structural funds for the 
period 2014 to 2020 reflects the preferences expressed, 
stating as one of the conditions for receiving funds 
that a national strategy for poverty reduction must 
be in place that “includes measures for the shift from 
residential to community based care” and “includes 
clearly measures to prevent and combat segregation 
in all fields”.98

In Germany, according to the Social Code (Article 37a 
SGB V), people with mental health problems are entitled 
to receive personal assistance in their use of medical 
treatment and services. This service is known as socio‑
therapy (Soziotherapie) and is available for a period of 
three years. This entitlement has been in existence for 
10 years. Many practical and administrative problems 
involved in its implementation, however, have resulted 
in low take‑up and lack of use, with only a minority of 
people with mental health problems having used it. An 
evaluation carried out in 2005 showed that only 2 % of 
the budget for this service had been used.97

Strict eligibility criteria can also restrict access to the 
services offered by day centres or community men‑
tal health teams or clinics. In the United Kingdom, for 
instance,  a  respondent  argued  that  the  fluctuating 
nature of his mental health problem generated eligi‑
bility difficulties:

“So then I lost my CPN [community practice nurse]. And then 
when I actually became unwell, and needed one, I had to 
go through the whole system again. So I had to go to the 
doctor’s, then make an appointment to see a CPN and then 
get shoehorned back into the system”

(Man, 44, United Kingdom)

British respondents appreciated the support provided 
by community‑based services and were concerned 
about the impact of public spending cuts on the local 
centres they relied on:

“They don’t want to spend money on prevention […] even 
though a wellbeing centre might cost less. They want to get 
rid of local wellbeing services and they don’t understand 
why we need them. They are the things that get us through.”

(Woman, 32, United Kingdom)

97  Germany, Aktion Psychisch Kranke (HG.) (2005) Evaluation 
der Umsetzung des § 37 a SGB V (Soziotherapie), available 
at: www.apk‑ev.de/Datenbank/projekte/0022_Bericht_
Soziotherapie_09_01_06%20kompl.pdf.

98  European Commission (2011), p. 148.

5151

Choice and control: the right to independent living

Promising practice

Bringing mental health services into 
the community

The  NGO  Chovekolyubie  (‘Philanthropism’)  in 
Pazardzhik,  Bulgaria,  has  developed  services 
through  its  Centre  for  Mental  Health,  including 
psycho‑social rehabilitation programmes, a crisis 
intervention  service  and  a  social  enterprise. 
The  business  includes  a  studio  to  manufacture 
souvenirs,  a  shop  for  honey  and  natural  bee 
products,  a  refreshment  stand  and  a  vegetable 
garden.  Users  of  mental  health  services  work  at 
the Centre: five to 11 people with severe mental 
health problems are on the Chovekolyubie staff at 
any given time.

In  Romania,  the  Orizonturi  Charity  Foundation 
in  partnership  with  the  Psychiatric  Hospital 
of  Câmpulung  Moldovenesc  and 
local  town 
halls  has  implemented  a  project  to  provide 
community alternatives to psychiatric assistance. 
The  project  aims  to  pilot  mobile  healthcare  and 
social  intervention  in  the  small  towns  and  rural 
communities  covered  by  the  psychiatric  district. 
Activities  are  focused  on  developing  alternative 
and 
the  Câmpulung 
Moldovenesc  Mental  Health  Centre  by  involving 
the  local  community  and  service  users  in  their 
design and implementation.

integrated  services  at 

For more information on Chovekolyubie in Bulgaria, see: 
http://chovekolubie.org/?page_id=80; and on Orizonturi in 
Romania: www.echipamobila.ro

2�3�  support for daily living

Persons  with  mental  health  problems  may  require 
support to improve choice and control over their daily 
life. Respondents spoke of their experiences with vari‑
ous forms of such support ranging from assistance in 
developing independent living skills; formal support 
options; informal support from family and friends; and 
support provided by NGOs and user groups.

development of independent 
living skills

Developing skills for independent living is essential for 
a successful transition from institutional to community 
living. Such skills may refer to essential daily activities 
such as getting dressed, washing or cooking to pay‑
ing the bills and dealing with administrative tasks. In 
Latvia, a woman described her training experience in 
independent living skills after a lengthy period of living 
in a social care home:

“We learned from scratch [...] how to cook, because I spent 
so many years in the institution, 14 and a half in total, and 
I did not cook anything. Personal hygiene – we learned all 
about that [...], then we went to the laundry room to learn 
how to iron. [...] Then there were psychology lessons, [...] 
then we learned about laws, our rights and duties.”

(Woman, 47, Latvia)

Most  respondents  wanted  to  live  independently 
whether in a group apartment or in their own home. 
However, some did not feel ready to make the move to 
independent life. In particular, respondents in Greece 
did not always feel confident enough or ready to reduce 
their  dependence  on  family  members.  Similarly,  in 
Bulgaria older respondents were unwilling to separate 
from their families fearing poverty or that they would 
not be able to cope with everyday activities and pay‑
ments. While independent living skills are important, 
other practical issues are also important for achieving 
a successful independent life. According to some stake‑
holders a major issue is the availability of housing and 
support services, which can be a serious obstacle to 
moving out of psychiatric hospitals and into commu‑
nity settings. In Latvia, for instance, a representative 
of Mental Health Care Nurses, which is also responsi‑
ble for a social care centre, said that around a third of 
those residing in her centre could live at home if they 
were provided with housing and community support 
services.  A  representative  of  the  Latvian  Ombuds‑
man’s Office expressed a similar view, suggesting that 
a recent visit to a psychiatric hospital indicated that 
about a third of the patients could live in the community 
if they had alternative community‑based care, including 
personal assistants.

Formal support options

The provision and availability of support services differs 
reflecting a variety of welfare regimes as well as the 
extent of progress towards deinstitutionalisation and 
community living. In Sweden, for instance, emphasis 
has been placed on the importance of allowing people 
with mental health problems themselves to choose who 
assists them. Stakeholders, however, noted that peo‑
ple with mental health problems can have difficulties 
accessing these services, as they are restricted to those 
persons with disabilities who have “severe and persis‑
tent difficulties in managing daily life”. In France, peo‑
ple with mental health problems living independently 
can benefit from the support provided by the Support 
Service for Social Life (Services d’accompagnement à la 
vie sociale, SAVS)99 and the Medical‑social Support Ser‑
vice for Disabled Adults (Services d’accompagnement 

99  France, Décret n° 2005‑223 du 11 mars 2005 relatif aux 
conditions d’organisation et de fonctionnement des 
services d’accompagnement à la vie sociale et des services 
d’accompagnement médico‑social pour adultes handicapés.

5252

Experiences of persons with mental health problems 

médico‑social pour adultes handicapés, SAMSAH).100 
SAVS provides independent living support for adults 
with mental health problems, including houseclean‑
ing, shopping and cooking, as well as administrative 
tasks. SAMSAH supplements the support of SAVS by 
coordinating people’s medical care.

A number of other EU Member States have introduced 
legal reforms to provide personal assistance but have 
faced major challenges meeting demand for support 
services and in implementing the policies. In Bulgaria, 
for instance, the Regulations for Implementation of the 
Social Assistance Act adopted on 1 June 2010 provide 
for personal assistance, but it is limited to 10 hours per 
year. Eligibility for assistance is linked to the level of 
reduced labour capacity or to the financial income of the 
users. The new Disability Law in Latvia, which entered 
into force on 1 January 2011, introduces the right to have 
a personal assistant initially for persons with visual 
impairments and from 2013 for persons with other dis‑
abilities, up to a maximum of 40 hours per week.

Several  EU  Member  States  have  implemented 
innovative provisions to promote the choice and control 
that persons with mental health problems have over the 
formal support services they use. Alongside personal 
assistance, one notable development has been the 
concept of personal budgets, for example in Germany, 
where persons with mental health problems make up 
the largest group of recipients: an evaluation carried 
out as part of the federal Personal Budget Pilot Project 
(2004–2007) found that 41 % of budget recipients were 
categorised as persons with mental health problems.101 
In the United Kingdom, the English government, as part 
of the move towards more personalised services, issued 
guidance to move towards more extensive use of direct 
payments, in particular by those groups that have not 
made wide use of them up to now, including people 
with mental health problems. According to this guidance 
local councils have not just a power, but a duty, to offer 
direct payments in most circumstances.102 Furthermore, 
since 2009, people judged to lack mental capacity in 
England have been able to receive direct payments, 

100 France, Ministère de la santé et de la solidarité. Ministère 
délégué à la sécurité sociale, aux personnes âgées, aux 
personnes handicapées et à la famille. Note DGAS SAVS 
SAMSAH 2006[1]. Les services d’accompagnement à la 
vie sociale (SAVS) et les services d’accompagnement 
médico‑social (SAMSAH).

101 Metzler, H., Meyer, T., Rauscher, C., Schäfers, M. and 
Wansing, G. (2007): Begleitung und Auswertung der 
Erprobung trägerübergreifender Persönlicher Budgets ‑ 
Wissenschaftliche Begleitforschung der Modellprojekte 
„Trägerübergreifendes Persönliches Budget“, available 
at: www.bmas.de/portal/23072/property=pdf/f366__
forschungsbericht.pdf.

102 See United Kingdom, Department of Health (2009 – revised 
2010) Guidance on direct payments for community care, 
services for carers and children’s services, available at: 
www.dh.gov.uk/en/Publicationsandstatistics/Publications/
PublicationsPolicyAndGuidance/DH_104840.

opening up the possibility for a third party to directly 
receive and manage the payment. Recipients of direct 
payments may decide who to employ, the hours they 
work and the tasks they carry out.

Respondents across each of the nine countries accessed 
specialised support services to facilitate independent liv‑
ing; however, the proportion of respondents using such 
services varied considerably. In France, Germany, Hun‑
gary and Sweden fewer than half of those interviewed 
accessed specialised support services to facilitate inde‑
pendent living, whereas in each of the three Member 
States Greece, Romania and the United Kingdom all but 
one respondent did.

Formal support in the form of personal assistance was an 
exception. Only a small number of respondents in Ger‑
many, Sweden and the United Kingdom brought forward 
experiences of formal support in the form of personal 
assistants. In Bulgaria and Greece, none of the respond‑
ents had any experience of personal assistant services. 
In Latvia, respondents claimed that support services, 
including personal assistants, are currently unavailable.

Unsurprisingly,  respondents  from  different  countries 
identified some similar issues which affected their abil‑
ity to carry out day‑to‑day activities and with which 
some of them felt they required assistance. In Sweden, 
for instance, respondents stressed that it was important 
to ensure that support systems are sufficiently flexible 
to provide the appropriate solution for each individual 
and that their availability should not be tied to particular 
forms of accommodation, such as group homes. In the 
United Kingdom, respondents who did not use the direct 
payment system felt they had little control over who 
assisted them and the service they were given. While one 
respondent was campaigning for the wider use of direct 
payments by people with mental health problems, others 
expressed concern about the potential stress associated 
with employing staff and the risk that local authorities 
might replace other services with direct payment.

Respondents had experienced a range of state‑funded 
formal ‘advocacy support’. Mental health advocacy 
according to the WHO103 was developed to promote the 
human rights of persons with mental disorders and to 
reduce stigmatisation and discrimination. It consists 
of various actions aimed at bringing down the major 
structural and attitudinal barriers to achieving positive 
mental health outcomes in populations and is consid‑
ered to be one of the eleven areas for action in any 
mental health policy. According to the Office of the 
Public Guardian in the United Kingdom, for instance, 

103 For a more general discussion of mental health advocacy, 

see WHO (2003) Advocacy for mental health: mental health 
policy and service guidance package, Geneva, WHO, available 
at: www.who.int/mental_health/resources/en/Advocacy.pdf.

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Choice and control: the right to independent living

advocacy is taking action to help people express their 
views and wishes; secure their rights; have their inter‑
ests represented; access information and services; and 
explore choices and options.104

In the United Kingdom three respondents received the 
support of an independent mental health advocate105 
shortly after being involuntarily detained in hospital. 
Several respondents had also served as or were being 
trained to act as advocates or peer supporters for other 
people with mental health problems. In Sweden, two 
respondents spoke very positively about their experi‑
ence of assistance from personal agents or personal 
ombudsman (personligt ombud):

“He learnt a lot about me and my needs; he was a person 
who listened to me and we still keep in touch.”

(Man, 30, Sweden)

The respondent no longer had a personal agent because 
none were available in his district. Other respondents as 
well as stakeholders expressed regret that this scheme, 
which was assessed very positively, was not available 
more widely.

104 For example, see United Kingdom, Office of the Public 

Guardian (OPG 606) Making decisions: The Independent 
Mental Capacity Advocate (IMCA) service, available 
at: www.justice.gov.uk/protecting‑the‑vulnerable/
mental‑capacity‑act.

105 For more information on the independent mental 
health advocate (IMHA) in the United Kingdom, 
see www.dh.gov.uk/en/Healthcare/Mentalhealth/
InformationontheMentalHealthAct/DH_091895.

5454

Promising practice

Supporting decision making: the 
personal agent or ombudsman

In Sweden advocacy support is provided through 
the institution of the personal agent or personal 
ombudsman  (personligt  ombud)  who  support 
people  with  mental  health  problems,  enabling 
them to enjoy a more independent life and equal 
opportunities  in  participating  in  community  life. 
Their  role  is  to  work  for  the  relevant  person 
to  assist  them  with  benefits,  entitlements  and 
administration  to  secure  their  accommodation 
and income.

Personal  agents  are  highly  skilled  professionals 
who work on individual assignments independently 
from  government  and  healthcare  providers  in 
many  municipalities.  They  are  not  part  of  the 
guardianship  regime  and  no  deprivation  of  legal 
capacity  is  involved.  They  only  act  upon  the 
decisions  of  their  ‘clients’.  Building  up  a  trusting 
relationship  in  which  this  is  possible  can  be  time 
consuming and therefore the engagement by the 
personal agent needs to be long‑term, usually for 
several years.

The central government covers part of the personal 
agent’s salary, with municipalities funding the rest 
as  well  as  additional  costs  such  as  premises  and 
cars. County councils co‑fund about 10 %.

Personal  agents  are  available  to  adults  who 
require support in their daily lives due to mental 
health  problems  and,  who  may  also  have 
a  substance  abuse  problem  and/or  be  homeless. 
Each  year,  thousands  of  people  are  helped  by 
around 300 personal agents, who have an average 
of 15 or more clients per year. There is no formal 
referral  procedure,  which  means  that  getting 
a personal agent is a fairly straightforward matter. 
The  fact  that  establishing  personal  agents  is  not 
compulsory  for  municipalities  means,  however, 
that their availability is not guaranteed. As cases 
are  assessed  on  an  individual  basis,  there  may 
be  waiting  lists.  In  some  parts  of  Sweden  young 
people  with  a  psychiatric  disability  are  given 
priority;  in  others,  priority  is  given  to  those 
with children.

Personal agents focus on their clients’ strengths. 
The agents help to create opportunities for greater 
choice and control over their social situation, thus 
increasing  their  chances  for  more  independent 
living.  In  this  sense,  personal  agents  function  as 
tools  in  a  process  in  which  the  client  develops 
greater self‑reliance.

For more information, see: www.personligtombud.se and 
www.ypos.se

Experiences of persons with mental health problems 

support from family and friends

Respondents  referred  to  the  significant  assistance 
provided by family and friends in the context of strong 
relationships based on affection and trust. A number 
of respondents in Latvia, Sweden and the United King‑
dom referred to the assistance in practical matters or 
decision making provided by spouses or partners. One 
man explained that he always sought his wife’s advice 
before making a significant decision:

“My wife’s opinion is most important. Then comes myself, 
perhaps my father, mother or brother, in that order. [...] 
I always carry my mobile phone, and in any situation in life 
we [the interviewee and his wife] call each other.”

(Man, 47, Latvia)

In  Bulgaria  and  Greece,  respondents  stressed  the 
importance of parental and sibling support. One man 
explained his difficulty in dealing with money and the 
support his sister gives him with it:

“I do not pay bills. […] My sister does this as she studied to 
be a shop assistant and she is good at this. […] If they give 
me the exact amount of money I can do it but when I shop 
the bill is not right at the end.”

(Man, 41, Bulgaria)

In the United Kingdom, a woman explained how she 
relied on her friends at a day centre for advice. Another 
relied on friends and family to let her know when she 
was  beginning  to  appear  unwell  so  that  she  could 
organise medical treatment accordingly.

support provided by ngos 
and user groups

NGOs and peer‑advocacy or user‑led groups provide 
many services that enhance participation and inclusion in 
community life. In some EU Member States, the involve‑
ment of user‑led groups in service provision has been 
specifically promoted and facilitated by the government. 
Since 2005 France, for instance, funds the participation of 
people with mental health problems in mutual assistance 
groups106 (Groupes d’entraide mutuelle, GEM). These 
services differ from medico‑social services in that they 
are managed by associations governed by people who 
themselves have mental health problems, providing new 
opportunities for people with mental health problems to 
express themselves and to search for their own solutions 
as service users. In 2010, 340 GEMs received €24 mil‑
lion in state support. An official evaluation107 in 2008 

106 More information available at: www.oisis.fr/.
107 France, Instruction DGAS/3B n° 2008‑167 du 20 mai 2008 
relative aux groupes d’entraide mutuelle pour personnes 
handicapées psychiques, available at: www.sante.gouv.fr/
fichiers/bo/2008/08‑06/ste_20080006_0100_0087.pdf.

confirmed that the GEMs brought benefits but noted 
that not all GEMs are managed by users’ organisations.

Respondents who attended a GEM said that it helped 
them to maintain a good level of social interaction and 
to expand their social participation. Stakeholders also 
appreciated the work and impact of self‑help groups:

“Even among organisations governing self‑help groups, it 
seems to be unthinkable to give responsibilities to users – 
[for example], keys and the ability to spontaneously organise 
meetings without other people – even though this is specified 
in the legislation. The GEMs were actually created in order to 
allow people with mental health problems to gain autonomy, 
to dare to be something other than just medical cases and 
sick people.”

(Stakeholder, France)

Peer advocacy groups have also been instrumental in 
assisting persons with mental health problems to select 
support options and in encouraging them to become 
involved in monitoring government‑provided support. In 
Sweden, for instance, managing personal assistants can 
be an arduous task for a user, particularly as they often 
have several assistants to manage. User organisations, 
such as Equality, Assistance and Community ( Jämlikhet, 
Assistans och Gemenskap, JAG) provide educational 
activities to support them in dealing with such tasks. 
In addition, user support centres (Brukarstödscentrum) 
provide basic information about rights, how to inter‑
pret information and the entitlement criteria of welfare 
authorities. They also help to formulate applications for 
services and assist in bringing complaints to the authori‑
ties and courts. Furthermore, user audits (brukarrevi‑
sion) have become quite common in mental health care 
provision. These systematic and independent assess‑
ments performed by users of mental health care ser‑
vices serve as an enabling way to ensure service quality.

Respondents who had received support from NGOs and 
user groups were very positive, but they often raised 
the issue of funding. Respondents in the United King‑
dom, for instance, were concerned about the possible 
effects of public sector cuts on day care centres:

“I just think that for the first time in my life, I am getting, 
I am really being treated as an individual, not as a diagnosis. 
I have never in my life experienced such support, not even 
from my own family. And the only bad thing is the threat of 
losing it of course.”

(Woman, 55, United Kingdom)

Respondents  also  regarded  as  impor tant  the 
opportunities to develop other skills, to socialise and 
meet people as well as the support network such centres 
generate. One man mentioned the assistance a Latvian 
day centre provided with paying his bills electronically 

5555

Choice and control: the right to independent living

and the opportunity it offered him to develop his com‑
puter skills. In Romania, some respondents who had 
used psychological counselling services provided by day 
care centres operated by NGOs stressed the importance 
of the social interaction the centres provide, as well 
their help in making relevant information accessible. 
One respondent said that using the services of an NGO 
day care centre had cut the length of his hospitalisa‑
tion stays.

“[…] put the focus on patients with mental health problems, 
they include them in this society and do not exclude them as 
the others do.”

(Man, 44, Romania)

In Hungary, a third of the respondents had used day 
services run by NGOs, which they said offered support 
to deal with the lack of appropriate social relationships 
and social activities:

“It was really good. They came to my house to see me, 
they asked me how I was, how it was going. When I was 
in a state, for example when I could not take the patients’ 
transport alone, they helped me, came with me in the 
vehicle. They gave all the support they could, but it was 
too little, the whole thing closed down.”

(Woman, 36, Hungary)

Stakeholders  stressed  the  importance  of  self‑help 
groups, and expressed their regret that Bulgaria, Hun‑
gary, Latvia and Romania did not have strong user‑led 
initiatives. Where self‑help groups are in place, stake‑
holders noted that they provided a valuable alternative 
to public services. They offer community programmes 
such as arts and craft making and other social events, 
as well as transport support, mentoring and training 
sessions that raise the quality of life. Stakeholders in the 
United Kingdom proposed establishing user‑led crisis 
houses that would provide an environment conducive 
to well‑being and recovery.

2�4�  participation 

in the community

Participation  and  inclusion  in  community  life  is 
fundamental to independent living. This section will 
examine the experiences of people with mental health 
problems with peer advocacy and their participation in 
public and political life.

5656

Promising practice

Building capacity

Since 2009, Latvian NGO RC ZELDA has organised 
in  which 
regular  capacity‑building  meetings, 
10–15 people with mental health problems discuss 
issues  of  importance  to  them,  such  as:  access 
to  social  services;  access  to  out‑patient  mental 
healthcare;  the  rights  provided  by  the  CRPD; 
the  new  Law  on  the  Rights  of  Patients  (2009); 
and  what  reasonable  accommodation  means  in 
education  and  employment.  RC  ZELDA  published 
a handbook in 2010 on peer advocacy for users of 
mental health services. The NGO plans to conduct 
train‑the‑trainer  courses  on  peer  advocacy  to 
facilitate more active participation by people with 
mental health problems in advocacy.

For more information, see: http://zelda.org.lv/
psihiatrijas‑pakalpojumu‑lietotaju‑kapacitates‑celsana and the 
Handbook for users of mental health care services ‘Peer helps 
peer’ (Rokasgrāmata psihiatrijas pakalpojumu lietotājiem 
‘Līdzīgs palīdz līdzīgam’), Riga, RC ZELDA, p. 63, available at: 
http://zelda.org.lv/wp‑content/uploads/Rokasgramata.pdf.

The FRA report on the right to political participation 
shows that deprivation of legal capacity can result in 
the loss of the right to vote.108 Among the EU Member 
States where interviews were conducted only Sweden 
and the United Kingdom permit persons with mental 
health problems to participate fully in the electoral 
process. Despite the restrictions in place elsewhere, 
none of the respondents commented on the issue of 
their right to vote.

Across the EU, self‑advocacy groups have sought to 
influence government policy making related to persons 
with mental health problems. Such campaigns can serve 
as a vehicle for people with mental health problems 
to become involved in the political life of their com‑
munities. In several countries, self‑advocacy groups 
have organised particular events to lobby for changes 
in government policy. In Romania, for instance, mem‑
bers of NGOs picketed the National Insurance Agency 
(Casa Nationala de Asigurari) and the Ministry of Health 
(Ministerul Sanatatii) demanding a debate be held on 
amending the law on mental health. With the help of the 
Ministry of Justice (Ministerul Justitiei), representatives 
of the Ministry of Health accepted an amendment to 
the article that allows hospitals to notify families within 
72 hours of when a person with mental health problems 
is admitted to the emergency department.

Respondents  in  all  countries  were  aware  of  the 
existence of organisations to support participation in 
community life. The level of participation in such groups 
varied considerably, however, as did awareness of the 
support they could provide. Respondents in Bulgaria, 

108 FRA (2010).

Experiences of persons with mental health problems 

Greece and Romania did not have contact with groups 
involved with protecting the rights of persons with 
mental health problems and were unaware of how they 
could join such organisations.

“One possible way to tackle people being treated as children 
is self‑help groups as these communities can significantly 
improve the motivation of the persons concerned to make 
decisions on their own and govern their own lives.”

(Stakeholder, Hungary)

Promising practice

Focusing on peer advocacy

In  Scotland,  United  Kingdom,  the  collective 
advocacy  organisation  Highland  Users  Group  has 
established a project to challenge the stigmatisation 
of mental health problems and to raise awareness 
and  understanding  of  mental  health  issues.  The 
project involves: supporting mental health service 
users  to  speak  out  about  their  lives;  delivering 
user‑led  mental  health  awareness  training  to 
professions  such  as  psychiatrists,  social  workers 
and teachers; media and public relations work to 
increase  public  understanding  and  to  challenge 
negative  reporting  on  mental  health  issues;  and 
the  sharing  of  good  practice  in  user‑involvement 
and anti‑stigmatisation work throughout Scotland 
and Europe.

For more information, see: www.hug.uk.net/
challengestigma_home.htm

The level of development of peer advocacy organisations 
was closely linked to participation in public and political 
life. In France, Germany, Sweden and the United King‑
dom several of the respondents were involved in service 
user groups which articulated the perspective of people 
with mental health problems in order to influence policy 
and service delivery. They referred to well‑developed 
networks of advocacy groups which sought to involve 
people with mental health problems in the design and 
implementation of policies and services affecting them. 
In contrast, in Bulgaria, Latvia and Romania respond‑
ents discussed the lack of self‑representation groups or 
organisations for people with mental health problems, 
and in Hungary stakeholders reported an almost total 
absence of advocacy groups.

“I miss some newspaper, newsletter or something which 
would reflect the problems and the potential of persons 
like me. I would like to be involved in preparing such 
a newsletter, issued for example by the day‑care centre 
I use now.”

(Woman, 51, Bulgaria)

Stakeholders generally recognised the importance of 
self‑advocacy groups and suggested that such groups 
and organisations should be more involved in influenc‑
ing the content and delivery of care. Stakeholders in 
Hungary identified the scope for user‑led groups to 
empower and inform people:

Stakeholders also stressed the need to build up the 
capacity and presence of advocacy organisations while 
maintaining their political independence.

“When we talk about the situation of persons with mental 
health problems their problems should not be presented by 
us anymore but by them. The face of these people is lacking 
in the media and in our society.”

(Stakeholder, Bulgaria)

“Our members do not have money to travel so that we 
can see each other to discuss even our agenda. The 
communication between us is broken. Some suggest that we 
use Skype but others do not want or do not have Skype. So 
we need support to be able to work as an organisation.”

(Stakeholder, Bulgaria)

2�5�  Barriers to inclusion 
and participation

This section examines experiences of participants in 
regard to barriers to inclusion and participation in the 
community, including restrictions of legal capacity and 
guardianship; informal restrictions on decision‑making; 
issues of involuntary treatment and involuntary place‑
ment;  past  experiences  in  institutions;  stigma  and 
discrimination; difficulties in accessing justice; and, 
financial restrictions, including poverty and the impact 
of austerity measures.

restrictions of legal capacity 
and guardianship

A  variety  of  legislative  provisions  in  the  countries 
covered by the research regulate the deprivation of 
legal capacity, as well as the appointment and func‑
tions of a guardian affecting different aspects of peo‑
ple’s choice and control over their lives. A legal analysis 
of the situation in the EU is provided in a forthcoming 
FRA report.109

At the time of the research only a few respondents were 
under different forms of guardianship and some others 
had previously experienced it. In addition, a third of 
French respondents were under curatorship and a small 
number of Swedish respondents had mentors: curators 
and mentors can make legally binding decisions only 
with the agreement or consent of the person concerned.

109 See FRA (forthcoming).

5757

Choice and control: the right to independent living

The  respondents’  experiences  of  the  process  of 
entering into guardianship varied widely. One woman 
in Germany spoke positively about the process and her 
involvement in it:

curator placed a lot of strain on family relations. Others, 
who had no experience of guardianship themselves, 
expressed concern about the impact it could have on 
their autonomy:

“Someone from the court came […] and then I chose her (the 
guardian) myself […] she had a file with her too, well, I do 
think it works well.”

(Woman, 50, Germany)

In Sweden, a participant explained that he had requested 
a mentor and was able to choose one that he liked.

By contrast, respondents in Bulgaria, Hungary, Latvia 
and Romania said that they had not understood what 
was  happening  when  the  restriction  of  their  legal 
capacity was considered or what the implications of 
being placed under guardianship would be. One Bulgar‑
ian man was sedated before being taken from hospital 
to the court hearing:

“I was sleepy and they did not try to explain anything 
to me.”

(Man, 41, Bulgaria)

One Hungarian woman was convinced that she was 
under guardianship, although in fact she retained full 
legal capacity:

“My mum has been my guardian for three years now and 
really if mum doesn’t have time to come with me and 
I go to the psychiatric hospital on my own then the doctor 
complains right away saying that I should not do this because 
my mother has to come as well so I should not do this. Also, 
if here in the local hospital, they advise that I should stay […] 
they always need my mum to sign so that she approves of 
me being admitted to the hospital.”

(Woman, 27, Hungary)

“A guardian, that would be the worst thing I could imagine.”

(Woman, 52, Germany)

On the other hand, two respondents in Sweden had 
positive experiences with their mentors regarding their 
choice and control over day‑to‑day living. They said that 
the arrangement provided them with useful support, 
such as in managing their finances.

informal restrictions on decision making

Respondents spoke about a number of informal restric‑
tions on their ability to take decisions about their lives. 
Although  in  many  cases,  as  discussed  previously, 
families were an invaluable source of support, some 
respondents said that their families restricted their 
choices,  especially  when  they  depended  on  them 
financially:

“My ‘dad’ influences me in many things, he supports me 
financially, and due to that – how to say that, doctor – he 
does not let me [...] be independent [...] be myself. I am 
under his influence. If I do not obey, he threatens me with 
taking back the support from my children. This is a terrible 
situation; I simply cannot assert myself.”

(Woman, 36, Hungary)

“But there are some people who are manipulative, for 
example a friend of mine lost her property that way. She was 
pushed over the edge by people telling her to go to different 
places all the time. She was physically and emotionally 
exhausted. Afterwards all her relatives got together and told 
her ‘Now sign these papers’. And she signed. Now she lives 
in a social care institution.”

(Woman, 26, Latvia)

Some respondents said that guardianship proceedings 
were initiated following disputes with family members:

In one case, a respondent was allegedly exploited:

“We had quarrels with my mother before the hospital. She 
made my Roma girlfriend have an abortion in the village 
where we lived with her. […] I wanted the child but she told 
me I am not ready to have a child. […] I was angry because 
I did not know. […]My mother brought my girlfriend to the 
place and paid for the abortion. […] So they punished me 
with compulsory treatment […] while I was in the hospital 
she became my guardian.”

(Man, 41, Bulgaria)

A number of respondents had negative experiences 
with  guardians.  For  example,  one  respondent  in 
France was unhappy because his curator restricted the 
budget he was allowed to spend supporting a heavy 
smoking habit. Another said that having his family as 

“While I was at home, she always tried to control my money 
and asked me to sign a power of attorney and she received 
my money and did not give me money [...] and she bought 
my sister a car with the money I received. For more than 
a year she received the money.”

(Woman, 47, Latvia)

Other respondents described how their parents tried to 
influence their choices about relationships and having 
children. A respondent in Romania, for instance, said 
that her parents pressured her into following a psy‑
chiatrist’s recommendation that she have an abortion 
because of her mental health problems.

5858

Financial problems

Low income and reliance on benefits are significant fac‑
tors that can limit the choice and control persons with 
mental health problems have over their lives.110

“I want to live by myself but just cannot afford this now.”

(Woman, 31, Bulgaria)

Poverty and mental health problems are self‑reinforcing 
phenomena.  A  survey  by  Eurobarometer  in  2010111 
showed that it is the poorest in society who suffer the 
most from mental health problems. The income of more 
than half of the respondents came from benefits or 
a disability pension. Respondents in Bulgaria, France 
and Germany and stakeholders in Greece explicitly 
cited poverty as a major factor inhibiting inclusion and 
participation:

“The benefit provided by the state is at one third of the 
poverty threshold. So practically, the right to independent 
living […] does not exist.”

(Stakeholder, Greece)

“If you have money troubles added to your mental health 
problems, you are in a precarious position.”

(Man, 44, France)

Participants mentioned financial problems in a variety 
of contexts. In Greece, Romania, Sweden and the United 
Kingdom, participants were concerned about changes 
to the benefits systems and cuts in provisions. In Bul‑
garia, they were worried about the frequency of their 
disability status review as they could not receive a dis‑
ability pension until they have been reviewed.

The sole income of those respondents without paid 
work came from benefits supplemented by financial 
help from family members:

“In the beginning we managed on our own with paying for 
those utilities [expenses], food. Last year we managed, but 
this year [...] heating is very expensive, so my mother helps 
me materially a little bit.”

(Woman, 25, Latvia)

Lack of financial resources also meant that respondents 
could not afford to engage in cultural and leisure activi‑
ties unless they were subsidised, funding for which the 
economic crisis has apparently curtailed:

110 For more information see European Commission (2008d).
111  European Commission (2010) Mental Health, Special 

Eurobarometer 345/Wave 732 – TNS Opinion & Social, 
October 2010, available at http://ec.europa.eu/health/
mental_health/docs/ebs_345_en.pdf.

Experiences of persons with mental health problems 

“Before, I used to go to the cinema, exhibitions and theatre 
a lot, but now I cannot afford to pay for it. They used to take 
us to such events from our centre but they haven’t done so 
during the last year.”

(Woman, 51, Bulgaria)

“I used to play sports. I used to go to the cinema every 
two weeks. I stopped doing that because I couldn’t afford 
it. I don’t do either of those now. I watch the television 
sometimes.”

(Man, 45, United Kingdom)

A respondent in the United Kingdom highlighted a lack 
of information about existing subsidies:

“There are schemes locally where they give you free training 
sessions with somebody at the gym if you need help. But 
nothing is freely advertised: you get some discounts and 
bus passes – nothing is advertised. You hear of them from 
somebody else.”

(Woman, 32, United Kingdom)

In contrast, respondents in Romania said that, pro‑
vided they had a disability assessment certificate, they 
enjoyed free access to theatres and museums.

involuntary treatment

Various legislative provisions regulate the possibility 
for involuntary psychiatric treatment. The FRA report 
Involuntary placement and involuntary treatment of 
persons  with  mental  health  problems  analyses  the 
legislation in place across the EU and, in addition, the 
findings in regard to involuntary placement or treatment 
from the fieldwork interviews with persons with mental 
health problems. All EU Member States specify mini‑
mum criteria for involuntary treatment and provide for 
a right to appeal against placement or treatment deci‑
sions. Despite these safeguards, however, respondents 
described their experiences of involuntary treatment in 
overwhelmingly negative terms, characterising them as 
frightening and humiliating. Specifically, respondents 
said that they were not provided with an explanation 
about the treatments and were given no opportunity 
to discuss them with their doctors.

impact of experiences in institutions

A  number  of  respondents  reflected  upon  their  past 
experiences in psychiatric hospitals, although, as already 
mentioned, people currently living in psychiatric facili‑
ties were not interviewed. Thus, all the accounts pre‑
sented here relate to past events – some occurring in the 
last year but others stretching back over a period of dec‑
ades. When recounting past experiences in institutions, 
respondents spoke of isolation, lack of privacy, the rigid‑
ity of daily routines, and power inequalities between 
staff and patients. Stakeholders were also critical:

5959

Choice and control: the right to independent living

“Our experience with attempts to communicate with patients 
placed under treatment in our regional hospital showed 
that it is very inaccessible for outside people. The overall 
condition of the patients in terms of their rights is worse than 
the condition of […] prisoners. Their contact with relatives 
and friends is […] cut, their phone[s] [are] taken away and 
the visits of outside people are not allowed.”

(Stakeholder, Bulgaria)

Respondents who had lived in institutions in the past 
spoke of an overwhelming feeling of lack of privacy 
caused  by  a  dearth  of  personal  space  because,  for 
instance, they shared rooms and bathrooms with oth‑
ers, sometimes with many others:

“Dark rooms, very small spaces, always a stale and foul 
odour. The bed sheets were dirty. There was no place […] 
to take a bath, and toilet bowls were cracked.”

(Woman, 39, Romania)

“All the patients had to use the bathroom together.”

(Man, 55, Greece)

“We slept two persons in a bed […] it was stupid, like in 
a concentration camp.”

In Bulgaria, a psychiatrist who worked in a psychiatric 
hospital provided one explanation of why patients were 
not permitted to keep mobile phones:

“We had a patient with [a] high position in society and some 
of the other patients used a mobile phone to [photograph] 
her and to send the pictures to be uploaded [on] the internet. 
We have to protect her rights and this is why we do not 
allow patients to use mobile phones.”

(Stakeholder, Bulgaria)

In contrast, a respondent in Sweden who had spent time 
in a psychiatric hospital said that the staff had bought 
cheap mobile phones, without a camera function, for all 
patients so that they could keep in better contact with 
their friends and family without risking the privacy of 
other patients.

Respondents also often spoke of their frustration with 
the number of restrictions on aspects of daily life and 
rigid routines:

“There are restrictions everywhere, what you do, how you 
express yourself, restrictions everywhere. You cannot go 
out, you cannot say the wrong thing.”

(Man, 43, Bulgaria)

(Woman, 26, Latvia)

Respondents also expressed discomfort at the sense of 
being watched and said they considered staff surveil‑
lance intrusive:

“Sometimes what they used to do was ‘obs’ where they 
watched people all day long. It was like a prison cell. 
They’d have the window like in a prison cell. They’d watch.”

(Woman, 45, United Kingdom)

In the United Kingdom and Hungary respondents spoke 
of glass doors in wards as having a particularly negative 
effect on women, who were made to feel vulnerable 
and exposed. In Latvia, a respondent was disturbed 
by the close circuit television (CCTV) installed – with 
the exception of bathrooms – throughout the hospital.

Respondents  in  Bulgaria,  Germany,  Hungary  and 
Sweden said that mobile phones were sometimes con‑
fiscated during hospital stays:

“As soon as they noticed my telephone, they took it. It was 
simply not allowed to use the telephone. Then I had to give it 
to the storekeeper, and it was awful.”

(Woman, 36, Hungary)

In  Romania  respondents  said  that  they  were  not 
permitted to use mobiles in closed wards, but could 
use them in open ones.

They also referred to restrictions on where they could 
go and access to the outdoors.

“You stay alone in a room, in pyjamas, you are not allowed 
to go out, as these are the conditions in the hospital.”

(Woman, 39, Romania)

In Bulgaria, a respondent described how she helped 
staff in order to be allowed outside for a few minutes:

“Once a doctor in […] did not allow me to go out of the ward 
(usually … we cleaned the hospital, the corridors, rooms, 
windows, and as a reward after that we were allowed to go 
out). Big deal that they would allow you to breathe fresh air 
for 10 minutes or half an hour!”

(Woman, 48, Bulgaria)

Respondents also regarded regulations affecting other 
aspects of choice and daily living as unnecessary or 
overly bureaucratic:

“There was a person who kept the cigarettes, but the rest 
of the cigarettes were kept by the storekeeper, but you had 
to ask for each one from the storekeeper, then you had to 
give it to the nurse, and then you gave it to – how do you say 
that – to the other person who stored the cigarette, so the 
whole thing was dreadful.”

(Woman, 36, Hungary)

6060

Respondents recalled a number of limitations on choice 
and control over their personal hygiene. In Bulgaria, 
respondents said that they were not allowed to go to 
the toilet when they needed to. In France, a 39‑year old 
woman described how, after being involuntarily admit‑
ted to a hospital in 2009, as punishment for breaking 
a window she was denied a shower.

Many negative experiences with staff related to their 
use of seclusion or restraint. Some of the respondents 
had experienced such seclusion or restraint themselves 
and others had witnessed forcible restraint being prac‑
ticed on others. In the United Kingdom, a respondent 
described being secluded overnight in a room naked 
without  bedding  or  furniture;  a  French  respondent 
reported  a  similar  experience.  The  use  of  forcible 
restraint was described by all who had experienced it as 
a traumatic and unforgettable experience that caused 
some of them physical injury:

“And because I resisted they tied me to the bed. It was 
horrible, awful! That was hard on a person. To tie you up to 
the bed so tightly you cannot move. And I asked for a drink, 
there was one person there, it was night time, and I was left 
alone in the corner moaning. And so I lay there in the dark, 
one orderly showed up and I asked her for a drink, and she 
brought a glass of water and I asked – can she untie one of 
my hands? Then she poured the glass of water in my face.”

(Woman, 53, Latvia)

“The last time there were two women and three men […] the 
men were very firm and aggressive. […] It is only one woman 
who looked me in the eyes in this traumatic moment. […] 
I think they ought to give the patient a feeling of having 
control, even in such a miserable moment. It is humiliating to 
be put in belt restraints on a plank bed with your legs spread; 
not even Jesus was crucified with his legs spread!”

(Woman, 42, Sweden)

“Restraint, that was very traumatic because there was no 
debriefing and the whole process of restraint, er, in my eyes 
it was bad.”

(Man, 56, Germany)

“One person was chucked in his bed. He was really chucked 
like that, his arms were held down, they tied him, strapped 
him, and I don’t want to know what else they did. However, 
he did not do anything bad; he was just talking at the 
window. There was nobody there though.”

(Man, 40, Hungary)

“I didn’t like the fact that sometimes the patients were 
strapped down. The staff should not have tied them down 
to calm them. They should have talked to them. This made 
me sad.”

(Man, 36, Greece)

Experiences of persons with mental health problems 

Some of the respondents considered that ethnic origin, 
age, sexual orientation and class affected the way staff 
treated patients:

“In one instance there was a lady brought in to the hospital 
who was not treated very well because she was not very 
clean and also I think because she was a Roma.”

(Woman, 27, Hungary)

“Well, unfortunately it happened a couple of times that there 
were elderly men on the closed unit where I was, and the 
staff treated them like dogs, they talked to them in a way, 
in an awful way.”

(Man, 40, Hungary)

“I was pressed up against the wall by a male nurse, who said 
he did not like me hinting at my sexual orientation.”

(Woman, 42, Sweden)

“The staff treated me differently because they perceived 
me as being reasonably middle class. Somebody I’m still 
good friends with, we were both at one stage, suicidally 
depressed. She had ECT treatment and I didn’t. I was referred 
for talking therapy and afterwards I actually wrote to the 
consultant – I said ‘why did you send me for therapy and not 
my friend who you sent for ECT?’ And the reply came back: 
‘We didn’t think that she would take to talking therapy.’ 
It was a different judgment about me. I’ve always been 
a good talker and speaker, I’m a very verbal person. But 
that other person now has early Alzheimer’s and she’s not 
much older than me. She was put on some very strong drugs 
which I avoided because I talked myself out of Librium and 
stuff like that, because I didn’t like the sound of it. Whereas 
she was not able to do so and she was put on these terrible 
drugs and she’s now a mass of physical problems. And I think 
I avoided the worst treatments simply because of my social 
class and my education.”

(Woman, 55, United Kingdom)

In Latvia and Hungary stakeholders attributed prob‑
lems with staff behaviour to lack of adequate training, 
staff shortages and heavy workloads. A respondent in 
Hungary, when asked whether she thought the lack 
of attention given to patients arose from lack of staff 
training, expertise or time said:

“Well, I think it is the matter of time, because they do not 
have the time, so they walk by the patients, no matter if 
they ask for a glass of water and so on. So yes, it’s a matter 
of time.”

(Woman, 34, Hungary)

6161

Choice and control: the right to independent living

stigmatisation and discrimination

Across  the  EU  legislation  transposing  the  Equality 
Employment Directive112 prohibits direct and indirect 
discrimination, as well as harassment and any instruc‑
tion to discriminate on grounds of disability, religion 
and belief, age, and sexual orientation in the fields of 
employment and occupation, vocational training and 
membership of employer and employee organisations.

Nevertheless,  discrimination  remains  part  of  the 
everyday lives of people with mental health problems 
across the EU, particularly in the area of employment, 
as discussed previously. A survey carried out by the 
Academic  Society  of  Romania  shows  that  of  those 
who reported being discriminated against, 30 % say it 
related to the labour market.113

Promising practice

Combating stigmatisation and 
discrimination

National  Mental  Health  Week  in  France  aims  to 
raise awareness through grass‑root actions. Each 
year  in  March  more  than  400  events  take  place 
with  users,  carers,  professionals,  local  officials, 
the  media  and  the  general  public  taking  part. 
The week aims to open public debate on mental 
health  issues,  promote  public  information,  raise 
the  awareness  of  stakeholders  and  elected 
officials, encourage people to seek help and fight 
against the stigmatisation of persons with mental 
health problems.

In Greece, the University Mental Health Research 
Institute  (UMHRI)  (Ερευνητικό  Πανεπιστημιακό 
Ινστιτούτο  Ψυχικής  Υγιεινής,  ΕΠΙΨΥ)  and  the 
Greek Ministry of Press published a guide for the 
presentation of mental health topics in the media. 
The  manual  focuses  on  providing  accurate  and 
objective  information  on  mental  health  topics 
and  refuting  common  myths  and  prejudices, 
particularly  through  the  use  of  correct  and 
socially responsible language. ‘Neutral’ terms are 
suggested to replace commonly used stigmatising 
labels.  The  guide  also  aims  to  raise  awareness 
among  media  workers  of  the  consequences  of 
stigmatising, and in highlighting the role the media 
can play in either perpetuating or combating such 
stereotypes.

For more information on France, see: www.unafam.org and 
www.psycom75.org; and on Greece, see: www.epipsi.gr/
Service_all/service/Antistigma/

Participants from Bulgaria, France, Germany, Greece, 
Romania and the United Kingdom recalled being victims 
of stigmatisation, abuse or bullying. Respondents and 
stakeholders recognised that there were entrenched 
misconceptions about people with mental health prob‑
lems which contributed to stigmatisation and reduced 
opportunities to participate in society. These miscon‑
ceptions often resulted in fear of people with mental 
health problems, leading to their social isolation, par‑
ticularly in rural areas. According to a Eurobarometer 
survey in 2010, on average, 22 % of EU citizens would 
find it difficult to talk to a person with a significant men‑
tal health problem, and a further 11 % are not sure how 
they would react.114 Many respondents commented on 
the negative effects of stigmatisation on their personal 
and family relations.

“With the illness it was like this: I was practically excluded 
from the family.”

(Woman, 52, Germany)

“My family rejects me just because I was in that psychiatric 
hospital.”

(Woman, 47, Latvia)

“I had a boyfriend whom I met after I finished high school. 
I did not tell him I had a crisis in 1999‑2000. In 2005, when 
I had the second crisis, he realised I had it as he came to the 
hospital and talked to my doctor. After that he gradually 
stepped away from our relationship and we parted. He said 
his parents influenced his decision and [used] my illness [to 
justify their role].”

(Woman, 29, Bulgaria)

Given  the  stigmatisation  associated  with  mental  ill 
health, respondents avoided disclosing their mental 
health problems wherever possible. A stakeholder in 
Bulgaria explained how people would travel long dis‑
tances to be treated away from their home town to 
hide their condition:

“There is a group of patients who do not search for 
psychiatric care in their places of residence for a number of 
reasons. I have patients from very distant towns. They come 
to Sofia because in Sofia they are anonymous. They say that 
the provision of psychiatric help to them in the small town 
would be known by the whole town.”

(Stakeholder, Bulgaria)

Respondents also mentioned incidents of abuse. In Lat‑
via, a woman respondent describes the hostility she 
regularly encounters from a bus driver to whom she 
shows her disability card:

112  Council Directive 2000/78/EC, OJ 2000 L 303.
113  Academic Society of Romania, Diagnostic: excluded from 
the labour market. Impediments in the employment 
of disabled persons in Romania, available at: http://
observator.sas.unibuc.ro/wp‑content/uploads/2011/01/
Diagnostic‑exclus‑de‑pe‑piata‑muncii.pdf.

114 European Commission (2010) Mental Health, Special 

Eurobarometer 345/Wave 732 – TNS Opinion & Social, 
October 2010, p. 61‑62, available at http://ec.europa.eu/
health/mental_health/docs/ebs_345_en.pdf.

6262

Experiences of persons with mental health problems 

“When I show him the card, he starts yelling so the whole 
bus can hear him: ‘The invalids are here, again those 
invalids!’”

(Woman, 25, Latvia)

In  the  United  Kingdom  all  respondents  who  had 
attended  mainstream  schools  reported  being  bul‑
lied there, as did over half of those attending special 
schools. They also said that they had been verbally 
abused in the street and on public transport, and many 
had been subject to attacks on or in their own homes. 
Although most participants were aware that certain 
actions were wrong and against the law, not all were 
convinced that the law could adequately protect them. 
Respondents in Germany felt that there was inadequate 
protection from victimisation, particularly in relation to 
making complaints.

difficulties in accessing justice

There are a variety of measures in place across the 
EU to enhance the opportunity for persons with men‑
tal health problems to access justice. In Germany, for 
instance, the Federal Network of Independent Offices 
for Complaints on Psychiatric Services (Bundesnetzwerk 
unabhängiger Beschwerdestellen Psychiatrie) estab‑
lished in 2010 operates in nearly 50 regions.115 These 
offices investigate grievances and complaints regarding 
psychiatric services, provide assistance and mediation 
services and try to find remedies. In France, the post 
of ‘general inspector’ of deprivation of liberty sites 
(Contrôleur général des lieux de privation de liberté, 
CGLPL)116 was introduced in 2007.117 This office can either 
offer its own services or be called upon by authorised 
persons or organisations. In cases involving the vio‑
lation of fundamental rights, the CGLPL can demand 
a response and/or refer the case to the public prosecu‑
tor or to the relevant disciplinary bodies. The CGLPL also 
advises on legislative changes.118

Nevertheless, many practical obstacles continue to 
inhibit access to justice. This is particularly problem‑
atic in institutions. The Bulgarian Helsinki Committee 
reported, for instance, that residents in institutions 
and psychiatric patients in acute wards do not have 
free access to pen, paper or envelopes nor to a post 
office, telephone or internet to send a complaint to 

the relevant authorities.119 Research conducted by the 
Latvian Centre for Human Rights in 2006 indicated that 
43 % of patients in psychiatric hospitals and 27 % of 
social care home residents did not know where to seek 
assistance to make a complaint about the quality of 
medical care, the attitude of personnel or conditions 
at psychiatric facilities.120

Respondents spoke of considerable discrepancies in 
terms of their awareness and use of complaint and 
redress mechanisms. In Germany, respondents active 
in self‑help organisations were, for instance, familiar 
with the institutional complaints bodies such as patient 
advocates, local, regional and federal offices, residen‑
tial home advisory boards and workshop councils, but 
other respondents relied on their relatives and exist‑
ing networks and service employees and some had no 
knowledge of complaints procedures. In Bulgaria none 
of the respondents was aware of complaints mecha‑
nisms in psychiatric hospitals.

In Greece, the majority of the respondents said that 
they had been informed of their rights with regard to 
bad or unfair treatment or bullying and harassment. 
They were aware of the competent institutions and the 
option to submit complaints; they pointed in particular 
to the Greek Ombudsman as the main institution pro‑
tecting human rights. A few respondents said, however, 
that they feared ‘publicity’ and stigmatisation if they 
addressed the ombudsman.

Few participants had made a formal complaint or taken 
legal action. In France, Hungary and Sweden a small 
number  of  participants  had  instigated  legal  action 
against official bodies or service providers. Only in the 
United Kingdom, where three‑quarters of participants 
had complained about aspects of their treatment, had 
a majority accessed justice.

summary

The  extent  to  which  people  with  mental  health 
problems interviewed were able to live independently 
in the community varied considerably reflecting the dif‑
ferent degrees and types of support available to them. 
Although considerable progress has been made, much 
more remains to be done. Disabling obstacles and pro‑
cesses – ranging from long, and sometimes involun‑
tary, stays in psychiatric hospitals, restrictions of legal 

115  See: www.beschwerde‑psychiatrie.de/index.html.
116 France, Projet de loi relatif aux droits et à la protection des 
personnes faisant l’objet de soins psychiatriques et aux 
modalités de leur prise en charge. Etude d’impact, May 2010, 
p. 15.

119 Bulgarian Helsinki Committee (2011) Human rights in Bulgaria 
in 2010, Sofia, Bulgarian Helsinki Committee, available at: 
http://issuu.com/bghelsinki/docs/report2010‑english.

117  France, Loi n° 2007‑1545 du 30 octobre 2007 instituant un 

120 Leimane‑Veldmeijere, I. and Veits, U. (2006) 

Contrôleur général des lieux de privation de liberté. Journal 
officiel de la République française, 31 October 2007.
118 Stark, J. and Maugey, C. (2009) Droit et hospitalisation 

psychiatrique sous contrainte, Paris, L’Harmattan, p. 42‑43.

Needs Assessment of Users of Mental Health Care 
Services, Riga: Latvian Centre for Human Rights, 
available at: www.humanrights.org.lv/html/news/
publications/29057.html, p. 21.

6363

Choice and control: the right to independent living

capacity and financial pressures to a lack of reasonable 
accommodations at work, insufficient support services, 
and stigmatisation and discrimination – contributed to 
excluding them from community life. Still, the inter‑
views also showed evidence of promising practices that 
help people with mental health problems to exercise 
more choice and control over their lives. Respondents 
described being empowered by appropriate support 
and  accommodative  systems,  while  reflecting  on 
restrictions that undermine their autonomy.

A lack of meaningful choice and control over where to 
live remains a dominant issue for people with mental 
health problems. Although many respondents lived 
alone or with people they have chosen, giving them 
both control over their daily lives and a place of refuge, 
others have not achieved this due largely to two inter‑
related factors. First, the lack of appropriate housing 
in the community and support for independent living 
leaves many with little choice but to live with their fami‑
lies or in group‑based accommodation characterised by 
varying degrees of institutional culture. Second, low 
income levels and dependence on state benefits restrict 
opportunities to choose a home to rent or buy. Partici‑
pants also described the lack of choice over which area 
to live in associated with reliance on subsidised hous‑
ing. While none of the participants lived in institutions, 
many expected that they would again spend time in 
psychiatric hospital in the future, and were concerned 
about the impact it would have on their ability to live 
independently in the long term.

Insufficient autonomy and inclusion can also curtail 
the ability to make choices over daily life. While many 
complete basic education, the onset of mental health 
problems during late adolescence often interrupts uni‑
versity education. Combined with a lack of reasonable 
accommodations and on‑going discrimination on the 
part of employers, this serves to undermine employ‑
ment prospects. In the absence of opportunities on the 
open labour market, many seek – or are given – jobs 
in sheltered workshops or are engaged with volun‑
tary organisations, viewing these activities as offer‑
ing the interaction, feeling of contributing to society 
and sense of purpose they would ideally get from paid 
work. Periods spent at sheltered workshops, however, 
serve to segregate people with mental health prob‑
lems from mainstream community life and can create 
stigmatisation that further undermines their prospects 
of getting and maintaining paid work on the general 
labour market.

Away from work, difficult interactions with healthcare 
services and insufficient or inappropriate community‑
based  mental  health  support  often  cloud  daily  life. 
General practitioners frequently fail to take physical 
complaints seriously, assuming that somatic issues are 

related to mental health status. Similarly, treatment for 
physical illness can be restricted on the basis of mental 
health problems, while information about diagnosis, 
medication and potential side effects is often lacking. 
Where available, talking and non‑medical therapies, 
as well as local centres offering flexible support and 
varieties of activities are highly prized. Respondents 
reflected on the need to enhance the availability of 
and access to such services, and particularly on the 
importance of ensuring that they reflect the fluctuating 
nature of mental health problems.

To live independently and have genuine choice and 
control over their lives, people with mental health prob‑
lems are likely to require access to a range of different 
forms of support. In terms of formal support, assistance 
with the development of independent living skills can 
smooth the transition from institutional or family living 
arrangements to community‑based ones. In the com‑
munity, state‑funded advocates or agents, who provide 
particular services such as support with finances, are 
highly valued. Others can benefit from technical devices, 
and from self‑developed techniques to avoid difficult 
tasks during periods of mental ill‑health. Informal sup‑
port mechanisms also serve to facilitate autonomy and 
inclusion. Discussing issues and getting informal advice 
from family and friends before making important deci‑
sions was identified as a key source of support by many 
participants, as were representative and self‑advocacy 
organisations, which often offer services and practical 
assistance with navigating different support options 
alongside their peer‑support role. Where such support 
mechanisms are lacking, exercising choice and control 
over daily life can become more challenging. Concern 
about the limited – and sometimes declining – avail‑
ability of many support options emerges strongly as 
a theme of this research.

In some countries, representative and self‑advocacy 
organisations play a valuable role both through peer 
support and by giving a voice to people with mental 
health problems in processes of shaping service delivery 
and policy. Where strong networks of user‑led organi‑
sations exist, they can help to inform and empower 
people with mental health problems, giving them both 
awareness of their rights and a means through which 
to articulate and campaign for their needs. In other 
countries, however, such organisations face consider‑
able challenges in terms of capacity‑building or politi‑
cal environment, leaving people with mental health 
problems more isolated, unsupported and less able to 
influence the shape of policies affecting them.

Alongside the challenges to autonomy and inclusion 
associated with living arrangements, daily activities, 
support services and participation in the community, 
additional legal and societal barriers work to curb the 

6464

Experiences of persons with mental health problems 

Finally,  economic  factors  operate  to  exclude  and 
marginalise people with mental health problems and 
deny them access to opportunities on an equal basis 
with others. In the absence of paid employment, many 
people are reliant on benefits, often set at a low level, 
for all or most of their income. Low income levels limit 
choices about where and with whom to live, to restrict 
access to support and to curtail participation in activities 
that would enable greater inclusion in the community. 
Such dependence exacerbates the stress brought on by 
repeated changes to the benefit system or to entitle‑
ment thresholds, as well as anxiousness associated with 
the need to prove the severity of mental health prob‑
lems in order to renew one’s disability status. Added 
to cuts in services and social security benefits associ‑
ated with on‑going austerity measures, this precarious 
financial position creates an insecurity that risks holding 
back progress towards meaningful independent living.

choice and control people with mental health problems 
can exercise over their own lives. On the legal side, 
many people are formally deprived – either totally or in 
part – of their legal capacity. This can leave them unable 
to sign contracts for employment or to take decisions 
about their property and finance, with these choices 
instead made by guardians they often have not been 
able to choose themselves. This lack of decision‑making 
power is particularly acute in relation to involuntary 
placement or treatment, which can see people with 
mental health problems detained and treated in resi‑
dential care against their will. Informal restrictions on 
legal capacity are also powerful, with families some‑
times acting to restrict people’s choice and control, and 
interfering excessively in their private lives. Moreover, 
despite changes intended to make the legal systems in 
EU Member States more accessible and responsive to 
people with mental health problems, many obstacles 
continue to restrict access to justice. Lack of awareness 
of complaint or redress mechanisms, insufficient legal 
support and fear of stigmatisation mean few people 
make formal complaints.

Societal barriers include institutional regimes that limit 
the choice and control not only of those in psychiatric 
hospitals and large social care homes, but also in smaller 
group homes where institutional cultures persist. Par‑
ticipants recalling their time in institutions described 
them as characterised by a lack of privacy and regi‑
mented daily routines, and marked by unequal power 
relationships between staff and residents. In the com‑
munity, stigmatisation and discrimination on the basis 
of mental health are common occurrences. Entrenched 
misconceptions about people with mental health prob‑
lems lead to abuse and bullying from the public, as well 
as sometimes negatively affecting personal relation‑
ships and interaction with service providers and medical 
professionals. This contributes to social isolation and 
reduced opportunities to participate in society. Fear of 
possible recriminations means, in addition, that many 
choose not to disclose their mental health status to 
others, depriving them of the possibility to benefit from 
reasonable adjustments.

6565

Conclusions

The findings demonstrate that many of the participants 
in this research often had reduced opportunities to live 
independently and participate in community life. The 
results also illustrate the positive impact that reform 
processes are already having on the lives of persons 
with mental health problems and those with intellectual 
disabilities. By highlighting some of the promising steps 
that are being taken to promote the choice and control 
they have over their lives, and by giving a platform to 
those whose voices are seldom heard, this report pro‑
vides an in‑depth understanding of the current situation 
which serves to illuminate the informed discussion that 
should now take place within the EU.

Despite important differences between individuals, 
many of the limitations which restrict independent 
living opportunities affected both people with mental 
health problems and people with intellectual disabilities. 
These limitations result largely from the persistence of 
disabling barriers which operate to exclude them from 
the mainstream of community life. The personal cost 
of practices of disempowerment, segregation, neglect, 
hostility and discrimination that were described by the 
individuals whose voices permeate this report is incal‑
culable. When, however, accommodative policies and 
adequate support were in place, participants spoke of 
the autonomy and freedom such measures brought to 
their lives, and reflected on the inclusion and participant 
in community life that opened up to them.

Individuals  striving  to  live  independently  in  the 
community need an enabling community context. The 
findings of the research point to a number of dimen‑
sions of community life and service provision which 
need to be addressed in order to improve access to and 
enjoyment of community facilities and services such as 
healthcare, public transport, education and municipal 
authorities. This raises questions about the capacity of 
current community services – both in terms of finances 

and human resources – to meet the needs of people 
with intellectual disabilities and mental health prob‑
lems, particularly in the context of the economic crisis.

The  main  obstacles  to  independent  life  identified 
through the research include legislation and policies 
that fail to support autonomy adequately or prevent 
it; lack of adequate community‑based housing and 
support options; persisting negative attitudes and low 
expectations which prevail in society, among many 
families, professionals and policy makers; and, wider 
socio‑economic factors which limit the scope for exer‑
cising choice and control, including labour market dis‑
advantage and low income.

Despite deinstitutionalisation efforts the continuing 
existence  of  large  scale  institutions  and  persisting 
institutional cultures contribute to the limitations of 
individual choice and autonomy. Leaving an institution 
often hinges on the availability of housing provision 
and other support in the community, making it difficult. 
People with disabilities cannot enjoy meaningful social 
inclusion and participation in the community without 
adequate support freely chosen and controlled by them.

Lack of encouragement, empowerment and opportunity 
to develop skills and independence can also impose 
constraints on the opportunities to live independently 
and participate in community life, even if they do not 
directly result in dependence on family members or 
others. Without adequate and independent income, 
appropriate support and integration measures, persons 
with mental health problems or intellectual disabilities 
may still face social isolation, even if they are physi‑
cally located in a house or apartment in the community.

Stigma, hostile and negative attitudes contribute to 
the isolation experienced by many respondents. Such 
attitudes lead to discrimination affecting persons with 

6767

Choice and control: the right to independent living

mental health problems or intellectual disabilities across 
all areas of social life, including employment, where 
strong legislation prohibits such phenomena. This sit‑
uation is as unacceptable as discrimination on other 
grounds, such as race or ethnic origin, and shows that 
there is a need to provide broader protection against 
discrimination on all grounds including disability.

The analysis presented in this report reveals a number 
of key factors operating at the level of the individual, 
the family and society, the community context, and the 
legal and policy sphere, which shape the level of choice 
and control people with disabilities have over their lives.

At the individual level, respondents confirmed that 
having choice and control in their lives was essential 
to their sense of personal well‑being and belief that 
they had a future. Although many had not achieved 
this, others had found a voice through peer contact 
and mutual support. Peer support, user‑led organisa‑
tions and self‑advocacy groups in particular appear to 
have played an instrumental role in helping individuals 
to develop higher expectations and to recognise and 
challenge injustice.

Positive  and  supportive  relationships  with  family 
members and others, including professional staff, were 
also important. Family members – whether parents, sib‑
lings or partners – are often a critical source of security 
and support for people with intellectual disabilities or 
mental health problems, especially in the absence of 
other community‑based support. Nevertheless, legal 
and policy frameworks should ensure that persons with 
disabilities who live with their families retain choice and 
control over their personal lives.

The research revealed situations where a person has 
no alternative but to live in an institution because they 
or their families lack financial and other resources to 
support them at home. To avoid such situations, specific 
measures may be necessary to provide families with 
the necessary support to keep their family members 
with intellectual disabilities or mental health problems 
at home. These measures should encourage families 
to play a role in fostering education and employment 
expectations and in assisting in their relative’s transition 
to independent living.

Discrimination in the labour market entrenches the 
dependence  of  people  with  intellectual  disabilities 
or mental health problems. Their exclusion from the 
workplace is a major cause of poverty, which in turn 
limits the possibility to live independently and leads to 
wider segregation and isolation from the community. 
Such exclusion is also likely to have contributed to the 
hostility which people with intellectual disabilities or 

mental health problems encounter when they do seek 
to engage with the wider community.

the way forward

The  rich  vein  of  material  provided  by  this  research 
shows that although much has been done, more efforts 
are needed to ensure that persons with mental health 
problems and persons with intellectual disabilities can 
live independently and be included in the community. 
Key initiatives in policy, law and practice, such as those 
mentioned below, can facilitate progress helping per‑
sons with mental health problems and persons with 
intellectual  disabilities  to  live  more  independently 
within the community.

 n Legal  and  administrative  measures  to  support 
decision‑making  by  people  with  mental  health 
problems or intellectual disabilities.

The deprivation of legal capacity can undermine the 
choice and control which is fundamental to living inde‑
pendently and being included in the community. The 
UN Committee on the Rights of Persons with Disabili‑
ties, in its Concluding Observations on Spain, recom‑
mended that “the State party review the laws allowing 
for guardianship and trusteeship, and take action to 
develop laws and policies to replace regimes of sub‑
stitute decision‑making by supported decision‑making, 
which respects the person’s autonomy, will and pref‑
erences. It further recommends that training be pro‑
vided on this issue for all relevant public officials and 
other stakeholders.”121

It  is  therefore  worthwhile  investigating  how 
mechanisms other than those based on the substituted 
decision‑making entailed in guardianship regimes can 
be established that can enable a person to negotiate 
important aspects of daily life, such as dealing with 
bank accounts or entering into financial transactions, 
which they might find challenging.

Laws on involuntary placement in psychiatric hospitals 
and involuntary psychiatric treatment should also be 
carefully  assessed  to  ensure  that  they  include  the 
appropriate checks and balances to ensure ‘choice and 
control’ which is the basis of independent living and 
community participation. The UN Committee on the 
Rights of Persons with Disabilities has recognised the 
inconsistencies between such laws and the CRPD and 
recommended in its Concluding Observations on Spain 
that the State Party: “review its laws that allow for the 
deprivation of liberty on the basis of disability, including 
mental, psychosocial or intellectual disabilities; repeal 
provisions that authorize involuntary internment linked 

121  United Nations, Committee on the Rights of Persons with 

Disabilities (2011), para. 34.

6868

Conclusions

to an apparent or diagnosed disability; and adopt meas‑
ures to ensure that health‑care services, including all 
mental‑health‑care services, are based on the informed 
consent of the person concerned.”122

 n Measures  to  ensure  that  adequate,  good  quality 
and  freely‑chosen  personalised  support  for  inde‑
pendent living is made available independently of 
the type of living arrangement.

Persons with intellectual disabilities and persons with 
mental health problems may need assistance, which 
can vary from person to person. This should be pro‑
vided regardless of their living arrangement. Personal 
assistance and/or particular technical devices may be 
necessary to support independent living. Whatever the 
type of support, it is important to ensure that the user 
can choose and control its use. The provision of such 
valuable personalised support should not replace sup‑
port and services provided by other important services 
and facilities, such as day centres.

 n Measures to ensure that support is available to the 
families  of  children  with  intellectual  disabilities  or 
mental health problems and to parents with intel‑
lectual disabilities or mental health problems to en‑
able them to look after their children.

Families often require additional support measures to 
ensure that a person with intellectual disabilities or 
mental health problems continues living with them. 
Without such support, there is a risk that the practice 
of abandoning such persons, in particular children, to 
institutional care will continue. Parents with disabilities 
may also require support to enable them to look after 
their own children at home. Such assistance should be 
freely chosen and controlled by the parents, and should 
adapt to reflect the families’ shifting needs as children 
grow older.

 n Measures to enhance the financial independence of 
people with intellectual disabilities or mental health 
problems through social security and employment 
promotion programmes.

Without financial independence autonomy and choice 
cannot be achieved. Therefore, appropriate employ‑
ment, sufficient income support and benefits and other 
relevant measures are necessary as preconditions for 
independent living, particularly during the current eco‑
nomic crisis – a point also recognised by the UN Com‑
mittee on the Rights of Persons with Disabilities in its 
Concluding Observations on Spain.123

 n Measures  combating  discrimination  and  ensuring 
equal access to employment and key areas of social 
life, such as education, culture, leisure and the pro‑
vision of goods and services, including affirmative 
action to remedy existing inequalities.

The  Equality  Employment  Directive 124  prohibits 
discrimination on grounds of disability in employment 
and occupation, vocational training and membership 
of employer and employee organisations. In ad dition, 
Article  5  of  the  directive  requires  that  employers 
take measures to enable persons with disabilities to 
access, participate in, or advance in employment, or to 
undergo training (‘reasonable accommodation’). The 
directive, however, sets out minimum requirements 
and EU Member States may provide for a higher level 
of protection in national legislation. Indeed, robust laws 
to prohibit discrimination in areas beyond employment 
and  occupation  have  already  been  implemented  in 
some EU Member States, but enforcement requires 
more rights awareness efforts and support in lodging 
and following up complaints. EU anti‑discrimination law 
could also be more effective by extending protection 
to all fields covered by the Racial Equality Directive.125

 n Measures to develop appropriate community‑based 
living arrangements that give a meaningful choice 
over where to live, making appropriate use of the 
EU’s structural finds.

Persons  with  mental  health  problems  and  persons 
with intellectual disabilities should be facilitated and 
empowered  to  choose  where  to  live.  This  requires 
the development of and support for a range of differ‑
ent living arrangements that reflect their needs and 
wishes for different levels of support, including group 
homes, supported living arrangements and personal 
assistance in one’s own home. Such measures should 
ensure that people do not resort to living in institutions, 
simply because they have no other viable option. This 
need has been highlighted by the UN Committee on the 
Rights of Persons with Disabilities, which in its Conclud‑
ing Observations on Spain expressed concern that: “[…] 
the choice of residence of persons with disabilities is 
limited by the availability of the necessary services, and 
that those living in residential institutions are reported 
to have no alternative to institutionalization.”126

EU Member States should make use of the EU’s Structural 
Funds for investments into deinstitutionalising mental 
health services and building up community‑based ser‑
vices. As the European Commission’s Ad Hoc Expert 
Group on the Transition from Institutional to Community‑
based Care noted, projects which aim to build, enlarge 

122 Ibid., para. 36.
123 Ibid., para. 9 and 39‑42.

124 Council Directive 2000/78/EC, OJ 2000 L 303.
125 Council Directive 2000/43/EC, OJ 2000 L 180.
126 Ibid., para. 39.

6969

Choice and control: the right to independent living

or perpetuate institutions are not in line with the CRPD 
and the EU’s own policies on equal opportunities, social 
inclusion and anti‑discrimination, and should therefore 
not be eligible for funding. Member States should there‑
fore ensure that structural funds are not used to build 
new segregating residential institutions.

 n Measures  to  reduce  any  administrative  burden 
associated  with  accessing  and  using  public  sup‑
port  services,  including  through  the  provision  of 
accessible  and  relevant  information,  particularly 
regarding entitlements.

Processes to demonstrate eligibility and to apply for 
particular services should be as simple as possible, and 
clearly explained to persons with disabilities. In particu‑
lar, information about and application procedures for 
support and services should be presented and com‑
municated in ways that are accessible. This includes 
the preparation of easy‑to‑read material, as well as 
measures to ensure that information is provided when 
required. Choice and control over where to live also 
means being able to move to a different administrative 
area. This requires introducing a degree of flexibility to 
the way support, allowances and benefits are trans‑
ferred from one area to another.

 n Measures 

supporting 

the  development  of 
self‑advocacy  organisations  and  measures  to  in‑
crease the active participation and involvement in 
politics  and  in  policy,  in  programme  development 
and decision making by people with intellectual dis‑
abilities and people with mental health problems.

Involvement in social and political life is at the heart of 
the implementation approach required by Article 4 (3) 
of the CRPD. It reflects the fundamental demand of the 
disability movement: ‘nothing about us without us’. To 
ensure such involvement, measures are needed to sus‑
tain and further develop the capacity of such organisa‑
tions, particularly in those EU Member States where 
they are underdeveloped and to safeguard their exist‑
ence and functioning, where public sector cuts put 
them at risk.

 n Measures  to  support  the  establishment  of  more 
community‑based  mental  health  centres  and  ser‑
vices for persons with mental health problems.

Flexible, person‑centred community‑based centres and 
mental health services provide valuable support for 
independent living reducing the need for hospitalisa‑
tion. It is important, therefore, particularly during a time 
of economic crisis and austerity‑driven cuts to sustain 
such services.

 n Measures  to  ensure  the  political  participation  of 
persons with mental health problems or intellectual 
disabilities. The right to vote is a basic prerequisite 
for effective involvement in the political process.

Laws which restrict the right of persons with mental 
health problems and persons with intellectual disa‑
bilities to political participation should be amended to 
ensure compliance with Article 29 of the CRPD, and the 
view of the Committee on the Rights of Persons with 
Disabilities that “all persons with disabilities, regardless 
of their impairment, legal status or place of residence, 
have the right to vote and participate in public life on an 
equal basis with others”.127 Additional steps that further 
facilitate political participation, for example allowing 
assistance by a person of one’s choice and ensuring the 
accessibility of polling stations and election material, 
should also be considered.

 n Measures  to  raise  awareness  about  complaints 
mechanisms  and  to  support  people  with  men‑
tal  health  problems  and  people  with  intellectual 
disabilities  to  access  justice  and  participate  in 
judicial procedures.

Meaningful access to justice requires both awareness 
of available redress mechanisms and support to use 
them. More targeted steps should be taken to promote 
awareness of relevant legislation protecting the rights of 
persons with mental health problems and persons with 
intellectual disabilities and of the complaint mechanisms 
available independent of their living arrangements or 
legal capacity. Adequate, independent and accessible 
support should be provided to them throughout the legal 
process, including legal aid where necessary. Such meas‑
ures should involve steps to increase the accessibility of 
the justice system, including by facilitating the participa‑
tion of persons with mental health problems and persons 
with intellectual disabilities in judicial procedures.

Across  the  European  Union  the  journey  towards 
social inclusion and participation for people with 
mental health problems and people with intellectual 
disabilities has begun. There is still a long way to 
go and little time to lose. At stake are deep‑seated 
values of the EU – a commitment to the dignity and 
autonomy of the person and an equal commitment 
to citizenship and inclusion.

7070

127 Ibid., para. 48.

Bibliography

Bartlett, P., Lewis, O. and Thorold, O. (2007) Mental Dis‑
ability and the European Convention on Human Rights, 
Leiden, Martinus Nijhoff.

com.instranet.InstraServlet?Index=no&command=com.
instranet.CmdBlobGet &InstranetImage=2037325&Sec
Mode=1&DocId=1858314&Usage=2.

Beresford, P. (2000) ‘What have madness and psychiat‑
ric system survivors got to do with disability and disabil‑
ity studies?’, Disability and Society, Volume 15, Issue 1.

Council Directive 2000/43/EC of 19 July 2000 imple‑
menting  the  principle  of  equal  treatment  between 
persons irrespective of racial or ethnic origin, OJ 2000 
L 180 (Racial Equality Directive).

Council  Directive  2000/78/EC  of  2 December 2000 
establishing a general framework for equal treatment 
in employment and occupation, OJ 2000 L 303 (Employ‑
ment Equality Directive).

Council of Europe, Committee of Ministers (2006) Rec‑
ommendation Rec(2006)5 of the Committee of minis‑
ters to member states on the Council of Europe Action 
Plan to promote the rights and full participation of peo‑
ple with disabilities in society: improving the quality 
of life of people with disabilities in Europe 2006–2015, 
5 April 2006.

Council of Europe, Committee of Ministers (2011) Recom‑
mendation Rec(2011)14 of the Committee of Ministers 
to member states on the participation of persons with 
disabilities in political and public life, 16 November 2011.

Council  of  Europe,  Commissioner  for  Human  Rights 
(2008)  Human  rights  and  disability:  Equal  rights 
for  all,  CommDH/IssuePaper  (2008)2,  Strasbourg, 
20 October 2008.

Council  of  Europe,  Commissioner  for  Human  Rights 
(2009a)  Persons  with  mental  disabilities  should  be 
assisted but not deprived of their individual human 
rights, Viewpoint, 21 September 2009.

Council  of  Europe,  Commissioner  for  Human  Rights 
(2009b)  A  neglected  human  rights  crisis:  persons 
with intellectual disabilities are still stigmatised and 
excluded, Viewpoint, 14 September 2009.

Council  of  Europe,  Commissioner  for  Human  Rights 
(2010a) Inhuman treatment of persons with disabilities 
in institutions, Human Rights Comment, 21 October 2010.

Council  of  Europe,  Commissioner  for  Human  Rights 
(2012a) Who gets to decide? Right of legal capacity for 
persons with intellectual and psychosocial disabilities, 
CommDH/IssuePaper(2012)2, available at: cd.coe.int/

Council  of  Europe,  Commissioner  for  Human  Rights 
(2012b) The right of people with disabilities to live inde‑
pendently and be included in the community, CommDH/
IssuePaper (2012)3, available at: https://wcd.coe.int/
com.instranet.InstraServlet?Index=no&command=com.
instranet.CmdBlobGet&InstranetImage=2047120&SecM
ode=1&DocId=1867328&Usage=2.

Council  of  Europe,  Commissioner  for  Human  Rights 
(2012c)  Persons  with  disabilities  have  a  right  to  be 
included in the community – and others must respect 
this principle, Human Rights Comment, available at: 
http://commissioner.cws.coe.int/tiki‑view_blog_post.
php?postId=211.

Council of Europe, Committee for the Prevention of Tor‑
ture and Inhuman or Degrading Treatment or Punish‑
ment (CPT) (2011) Report to the Latvian government 
on the visit to Latvia carried out by the European Com‑
mittee for the Prevention of Torture and Inhuman or 
Degrading Treatment or Punishment from 3 to 8 Decem‑
ber 2009, CPT/Inf (2009)22, Strasbourg, 19 July 2011.

Council of Europe, CPT (2012) Report to the Bulgarian 
government on the visit to Bulgaria carried out by the 
European Committee for the Prevention of Torture and 
Inhuman or Degrading Treatment or Punishment from 
18 to 29 October 2010, CPT/Inf (2012) 9, Strasbourg, 
15 March 2012.

Council of Europe, European Commission for Democ‑
racy through Law (Venice Commission) (2011) Revised 
interpretative declaration to the code of good prac‑
tice on electoral matters on the participation of peo‑
ple  with  disabilities  in  elections,  CDL‑AD(2011)045, 
19 December 2011.

Council Regulation No. 1083/2006 of 11 July 2006 lay‑
ing down general provisions on the European Regional 
Development  Fund,  the  European  Social  Fund  and 
the Cohesion Fund and repealing Regulation (EC) No. 
1260/1999, OJ 2006 L 210, 31 July 2006.

Ebersold, S., Schmitt, M.J. and Priestley, M. (2011) Inclu‑
sive education for young disabled people in Europe: 
Trends, issues and Challenges, A synthesis of evidence 
from  ANED  country  reports  and  additional  sources, 
available at: http://disability‑europe.net/content/aned/
media/ANED%202010%20Task%205%20Education%20
final%20report%20‑%20FINAL%20%282%29_0.pdf.

7171

Choice and control: the right to independent living

Ericsson,  K.  and  Mansell,  J.  (1996)  Introduction: 
Towards deinstituionalisation, in: Deinstitutionalisa‑
tion and community living: intellectual disability ser‑
vices in Britain, Scandinavia and the USA, available 
at: www.kent.ac.uk/tizard/staff/documents/Mansell‑
1996Deinstitutionalisation andCommunityLiving.pdf.

European Commission (2008a) Proposal for a Council 
Directive on implementing the principle of equal treat‑
ment between persons irrespective of religion or belief, 
disability, age or sexual orientation, COM(2008) 426, 
2 July 2008.

European Commission (2008b) First Disability High level 
Group report on implementation of the UN Convention 
on the Rights of Persons with Disabilities, Brussels.

European Commission (2008c) European Pact for Men‑
tal Health and Well‑Being, EU High‑Legal Conference 
Together for Mental Health and Wellbeing, Brussels, 
12–13 June 2008.

European Commission (2008d) Mental health in the 
EU: Key facts, figures, and activities – A background 
paper, SUPPORT‑project, Brussels, available at: http://
ec.europa.eu/health/archive/ph_determinants/
life_style/mental/docs/background_paper_en.pdf.

European  Commission  (2009) Report  of  the  ad  hoc 
expert group on the transition from institutional to 
community‑based care, Brussels, Directorate‑General 
for Employment, Social Affairs and Equal Opportunities.

European  Commission  (2010a)  European  Disabil‑
ity Strategy 2010–2020: A Renewed Commitment to 
a Barrier‑Free Europe, COM(2010) 0636 final, Brussels, 
15 November 2010.

and representation of the European Union relating to 
the United Nations Convention on the Rights of Per‑
sons with Disabilities, 2010/C 340/08,OJ 2010 C 340, 
15 December 2010.

European Network on Independent Living (2012) Defend 
the right of independent living – how the EU’s austerity 
policy is undermining the lives of people with disabili‑
ties. Report from the Hearing in the European Parlia‑
ment 9 February 2012, Valencia, European Network on 
Independent Living.

European Union Agency for Fundamental Rights (FRA) 
(2010) The right to political participation of persons with 
mental health problems and persons with intellectual 
disabilities, Luxembourg, Publications Office of the Euro‑
pean Union (Publications Office).

FRA (2011) The legal protection of persons with mental 
health problems under non‑discrimination law, Luxem‑
bourg, Publications Office.

FRA (2012) Involuntary placement and involuntary treat‑
ment of persons with mental health problems, Luxem‑
bourg, Publications Office.

FRA (forthcoming) Legal capacity of persons with men‑
tal health problems and persons with intellectual dis‑
abilities, Luxembourg, Publications Office.

Fakhoury,  W.  and  Priebe  S.  (2000)  ‘The  process  of 
de‑institutionalisation: an international overview’, Cur‑
rent Opinion in Psychiatry, 15.

Goffman, E. (1961) Asylums: Essays on the social situ‑
ation of mental patients and other inmates, New York, 
Doubleday.

European Commission (2010b) Commission Staff Work‑
ing Document to the European Disability Strategy 2010‑
2020, SEC(2010) 1323 final, Brussels, 15 November 2010.

Goffman, E. (1963) Stigma: Notes on the management 
of spoiled identity, Upper Saddle River, New Jersey, 
Prentice Hall.

European Commission (2011) Proposal for a regulation of 
the European Parliament and of the Council laying down 
common provisions on the European Regional Develop‑
ment Fund, the European Social Fund, the Cohesion Fund, 
the European Agricultural Fund for Rural Development 
and the European Maritime and Fisheries Fund covered 
by the Common Strategic Framework and laying down 
general provisions on the European Regional Develop‑
ment Fund, the European Social Fund and the Cohesion 
Fund and repealing Regulation (EC) No. 1083/2006, 
COM(2011) 615 final, Brussels, 6 October 2011.

European Council (2010) Code of Conduct between the 
Council, the Member States and the Commission setting 
out internal arrangements for the implementation by 

Keys, M (2009) ‘Legal Capacity Law Reform in Europe: 
An Urgent Challenge’, in: Quinn, G. and Waddington, L. 
(eds) European Yearbook of Disability Law, Intersentia.

Lindqvist,  R.,  Markström,  U.,  Rosenberg,  D.  (2010), 
Psykiska funktionshinder i samhället. Malmö: Gleerups.

Mansell, J. (2006), ‘Deinstitutionalisation and commu‑
nity living: progress, problems and priorities’, Journal of 
Intellectual and development Disability, 31(2), pp. 65–76.

Mansell, J. et al. (2007) Deinstitutionalisation and com‑
munity living‑‑outcomes and costs: report of a European 
Study. Main report, Canterbury, Tizard Centre, University 
of Kent.

7272

Bibliography

Mégret, F. (2008), The Disabilities Convention: Human 
Rights of Persons with Disabilities or Disability Rights, 
Volume 30, Human Rights Quarterly.

UN, OHCHR (2010) Monitoring the Convention on the 
Rights of Persons with Disabilities: Guidance for Human 
Rights Monitors, New York and Geneva, United Nations.

Mercer, G. (2004) ‘User‑led Organisations: Facilitating 
Independent Living’ in: Swain, J., French, S., Barnes, C. 
and Thomas, C. (eds.), Disabling Barriers: Enabling Envi‑
ronments, London, Sage.

UN, OHCHR European Regional Office (2010) Interna‑
tional Seminar on the Human Rights of Persons in Insti‑
tutional Care: Forgotten Europeans, organised by the 
European Regional Office of the OHCHR in October 2010.

UN, Committee on the Rights of Persons with Disabilities 
(2011) Concluding observations of the Committee on the 
Rights of Persons with Disabilities – Spain, Sixth session, 
19–23 September 2011, available at: www.ohchr.org/
Documents/HRBodies/CRPD/6thsession/CRPD.C.ESP.
CO.1_en.doc.

UN, General Assembly, Convention on the Rights of 
Persons with Disabilities, adopted 13 December 2006, 
General Assembly Resolution 61/106.

United Nations, General Assembly Human Rights Coun‑
cil (2011) Thematic study by the Office of the United 
Nations High Commissioner for Human Rights on par‑
ticipation in political and public life by persons with dis‑
abilities, 21 December 2011, A/HRC/19/36.

Waddington, L. (2011) ‘Future prospects for EU equal‑
ity law: Lessons to be learnt from the proposed Equal 
Treatment Directive’, European Law Review 163.

World Health Organization (WHO) and World Bank (2011) 
World report on disability, Geneva, WHO.

Minkowitz, T. (2010) ‘Abolishing Mental Health Laws 
to Comply with the Convention on the Rights of Per‑
sons with Disabilities’ in: McSherry, B. and Weller, P., 
Rethinking Rights‑Based Mental Health Laws, Portland, 
OR, Hart Publishing.

Parker, C. with Bulic, I. (2010) Wasted Time, Wasted 
Money, Wasted Lives ... A Wasted Opportunity?, Lon‑
don, ECCL.

Parker, C. (2011) A community for all: implementing 
Article 19 – A guide for monitoring progress on the 
implementation of Article 19 of the Convention on the 
Rights of Persons with Disabilities, Open Society Public 
Health Program, available at: http://www.soros.org/
initiatives/health/focus/mhi/articles_publications/
publications/community‑for‑all‑20111202/commu‑
nity‑for‑all‑guide‑20111202.pdf.

Parker, C. (2011) Forgotten Europeans – forgotten rights: 
the human rights of persons placed in institutions, Office 
of the High Commissioner for Human Rights European 
Regional Office.

Pfeiffer, J. et al. (2009) Report of the Ad Hoc Expert 
Group on the Transition from Institutional to Commu‑
nity‑based Care, Brussels, European Commission.

Priestley, M. (1999) Disability and Community Care, Lon‑
don, Jessica Kingsley Publishers.

Townsley, R. et al. (2010) The implementation of poli‑
cies supporting independent living for disabled people 
in Europe: Synthesis report, ANED.

Tromel, S. (2009) ‘A personal perspective on the draft‑
ing history of the United Nations Convention on the 
Rights of Persons with Disabilities’ in Quinn, G. and 
Waddington, L. (eds.) European Yearbook of Disability 
Law, Mortsel, Intersentia.

United Nations (UN) Office of the High Commissioner 
for Human Rights (OHCHR) (2009) Thematic study of 
the Office of the United Nations High Commissioner 
for Human Rights on Enhancing Awareness and Under‑
standing of the Convention on the Rights of Persons 
with Disabilities, A/HRC/10/48 (2009).

7373

annex 1: sample composition at national level

Table A1: Sample composition – people with intellectual disabilities

Living 
arrangement

Education

Employment

Country 

i

s
w
e
v
r
e
t
n

i

f
o

.

o
n

l

a
t
o
T

Men Women

)
r
e
n
t
r
a
p
h
t
i

w

(
e
n
o
A

l

e
m
o
h
p
u
o
r
G
/
d
e
t
c
e
t
o
r
P

s
d
n
e
i
r
f

r
o
y

l
i

m
a
F

l

y
r
a
t
n
e
m
e
e
/
y
r
o
s
l
u
p
m
o
C

l

i

o
o
h
c
s
h
g
H
/
y
r
a
d
n
o
c
e
S

y
t
i
s
r
e
v
n
U

i

n
o
i
t
a
c
u
d
e
o
N

l

d
e
y
o
p
m
e
n
U

d
e
r
e
t
l
e
h
s
/
d
e
t
c
e
t
o
r
P

t
e
k
r
a
m

r
u
o
b
a

l

n
e
p
O

r
e
h
t
O

TOTAL 

105

58

47

18

29

58

48

49

2

6

59

27

14

6

BG

DE

EL

FR

HU

LV

RO

SE

UK

10

10

20

10

9

11

10

11

14

6

5

12

6

5

7

3

6

8

4

5

8

4

4

4

7

5

6

‑

1

‑

6

‑

‑

‑

4

7

9

5

3

‑

1

7

2

1

1

1

4

17

4

8

4

8

6

6

1

9

13

5

9

6

5

‑

‑

9

1

1

5

‑

4

4

11

14

‑

‑

1

‑

‑

1

‑

‑

‑

‑

‑

5

‑

‑

‑

1

‑

‑

8

‑

19

2

3

6

8

8

5

1

9

‑

2

4

1

2

3

4

1

1

1

4

1

4

‑

‑

‑

‑

‑

2

1

‑

‑

‑

2*

3**

Notes: UK: *The ILO definition of employment is used, denoting that some part of paid employment was being undertaken at the 

time of the interview. However, substantial underemployment was apparent, with some participants working as little as 
one hour a week. **Refers to people who have retired from the labour market as a consequence of age or long‑term ill health.

Source: FRA, 2011

7575

 
 
 
 
 
 
 
 
 
 
 
 
Choice and control: the right to independent living

Table A2: Sample composition – people with mental health problems

Living arrangement

Education

Employment

Country

i

s
w
e
v
r
e
t
n

i

f
o

.

o
n

l

a
t
o
T

Men

Women

)
r
e
n
t
r
a
p
h
t
i

w

(
e
n
o
A

l

e
m
o
h
p
u
o
r
G
/
d
e
t
c
e
t
o
r
P

TOTAL

115

54

61

40

12

BG

DE

EL

FR

HU

LV

RO

SE

UK

10

12

15

16

8

12

21

9

12

5

8

8

7

2

6

7

6

5

5

4

7

9

6

6

14

3

7

‑

9

1

10

2

2

5

5

6

‑

‑

6

‑

2

3

‑

‑

1

l

y
r
a
t
n
e
m
e
e
/
y
r
o
s
l
u
p
m
o
C

l

i

o
o
h
c
s
h
g
H
/
y
r
a
d
n
o
c
e
S

31

50

‑

9

6

‑

5

3

6

2

‑

5

1

3

11

3

4

14

3

6

l

d
e
y
o
p
m
e
n
U

d
e
t
c
e
t
o
r
p
/
d
e
t
r
o
p
p
u
S

t
e
k
r
a
m

r
u
o
b
a

l

n
e
p
O

r
e
h
t
O

63

14

26

12

4

4

9

2

5

6

20***

5

8

5

4

1

‑

‑

1

‑

3

‑

1

4

4

5

3

4

1

1

3

‑

‑

1

9

‑

1

‑

‑

1

y
t
i
s
r
e
v
n
U

i

34

5

2**

6

5

‑

5

1

4

6

s
d
n
e
i
r
f

r
o
y

l
i

m
a
F

63

10*

3

8

6

4

7

16

4

5

Notes:  BG: *Two of the participants live as a family, but together with the man’s mother and sister. DE: **Not completed yet. RO: ***15 

(six men and nine women) out of 20 unemployed participants attended a day care centre. Occasionally they received a small 
amount of ‘pocket’ money for the worked performed there.

Source: FRA, 2011

7676

 
 
 
 
 
 
 
 
 
 
 
 
 
annex 2: methodology

The  report  is  based  on  fieldwork  interview  based 
research in nine EU Member States: Bulgaria, France, 
Germany, Greece, Hungary, Latvia, Romania, Sweden 
and  the  United  Kingdom.  Additional  background 
material produced through desk research covering all 
EU Member States allowed the contextualisation of the 
fieldwork findings.

The FRA administered the project and applied its own 
rigorous quality control measures including a review 
by its Scientific Committee. A large part of the back‑
ground research and the fieldwork was outsourced to 
the Human European Consultancy, which formed a core 
research team composed of Neil Crowther, Edurne Garcia 
Iriarte, the National Institute for Intellectual Disability 
(Dublin), Anna Lawson (Leeds University), Oliver Lewis 
and Jasna Russo (Mental Disability Advocacy Centre), 
Rachel Stevens (NUI Galway) and Rannveig Traustadottir 
(University of Iceland). In addition, background studies 
and fieldwork research at the national level were con‑
ducted by national researchers; see Annex 3 for a full 
list. The research was supported by an ad hoc advisory 
board composed of the following civil society organisa‑
tions: European Network of Independent Living (ENIL), 
the European Disability Forum (EDF), the European Net‑
work of (ex) Users and Survivors of Psychiatry (ENUSP), 
the European Platform of Self Advocates, and Inclusion 
Europe. In addition, the following experts kindly contrib‑
uted to the work Michael Bach (Canadian Association 
for Community Living), Mark Priestly (Leeds University), 
Gerard Quinn (NUI Galway), and Lisa Waddington (Maas‑
tricht University). The responsibility for the analysis and 
conclusion lies with the FRA.

primary data collection

Empirical research was carried out in nine EU countries 
(Bulgaria, France, Germany, Greece, Hungary, Latvia, 
Romania, Sweden and the United Kingdom) between 
November  2010  and  July  2011.  This  was  qualitative 
research underpinned by principles of participatory 
research methodology – a methodology which aims to 
empower the subjects of the social inquiry. It consisted 
of one‑to‑one semi‑structured interviews and focus 
group discussions which will be outlined below.

participatory approach

Par ticipator y  research  principles  guided  the 
development of the research design.128 The methodol‑
ogy selected aimed to ensure that people with mental 
health problems and people with intellectual disabilities 
would be active participants at all stages of the study 
and that they and their representative organisations 
would be given a guiding role in the process of analysis 
and conclusion formulation.

Accordingly, the leading EU level NGOs representing 
people with mental health problems and people with 
intellectual disabilities, as well as other organisations 
working in the field of disability rights and independent 
living more generally, nominated members to take part 
on the project’s Advisory Board.

128 For more information and references on emancipatory 
research see National Disability Authority (Ireland) 
proceedings from its 2005 conference on using emancipatory 
methodologies in disability research, available at www.nda.
ie/cntmgmtnew.nsf/0/87418679FAE58B0E80256F02004753E
9?OpenDocument.

“This is my house – well, actually it is a flat. I want to 
show that I live independently. Although I get support 
I’m an associate (of the support organisation) now, 
which means that I’m quite independent. I’ve been 
living here a long time. “

“Where I work we have a co‑worker model. 
That means that we work equally with other people: 
a person with a learning disability and a person 
without a learning disability. That’s very important – 
it’s much better.”

(United Kingdom respondent)

(United Kingdom respondent)

7777

Choice and control: the right to independent living

training

A two‑day training event on the project methodology 
was held in October 2010. Principal researchers from 
the nine countries in which the empirical work was con‑
ducted were asked to attend. This event explored the 
underlying values and aims of participatory research as 
well as covering methods and matters relating to ethics, 
data protection and health and safety.

people with mental health problems 
and people with intellectual disabilities

In order to respect the fact that there may be potentially 
important  differences  between  the  experiences  of 
people with mental health problems and people with 
intellectual disabilities, the empirical research was con‑
ducted as two parallel and distinct strands.

interviewee samples

The  sample  of  people  with  intellectual  disabilities 
consisted of 105 people from the nine different coun‑
tries. A detailed breakdown of the characteristics of this 
sample is to be found in Table A1 in Annex 1.

The sample of people with mental health problems 
consisted of 115 people, from the nine different coun‑
tries. A detailed breakdown of the characteristics of this 
sample is to be found in Table A2 in Annex 1.

Neither  sample  included  people  falling  into  the 
following categories:

 n people  unable  to  communicate  relatively  easily  in 

an interview situation;

 n people currently living in obvious 

institutional regimes;

 n people under guardianship whose guardian refused 

consent to the interview; and

 n people under the age of 18 (although the adult par‑
ticipants were asked about childhood experiences).

methods

A range of research methods were used, comprising 
the following methods.

 n One‑to‑one semi‑structured interviews

One‑to‑one semi‑structured interviews with 220 people 
(115 people with mental health problems and 105 people 
with intellectual disabilities).

Interviewees were recruited by country researchers 
on the basis of purposive sampling. Assistance with 
recruitment was often provided by local and national 
NGOs working in areas connected with the human rights 
of people with mental health problems and people with 
intellectual disabilities.

 n Focus groups with interviewees

At least one focus group for interviewees with mental 
health problems and one for interviewees with intellec‑
tual disabilities was held in each of the nine countries.129 
Their purpose was to present the interviewees with the 
emerging findings and obtain their views and insights 
which were then fed into the analysis.

 n Focus groups with stakeholders

One focus group for stakeholders with expertise and 
experience  relating  to  people  with  mental  health 

129 In Germany, people other than the interviewees and their 
support persons were also present at these focus groups.

“Being loved by someone gives me a reason to live 
when I am in my darkest depression. “

“I like to go to rock concerts and to the cheering 
section of my favourite Swedish football team.“

(United Kingdom respondent)

(Swedish respondent)

7878

problems and one focus group for stakeholders with 
expertise  and  experience  relating  to  intellectual 
disability was held in each of the nine countries. Their 
purpose was to present stakeholders with the emerging 
findings and analysis and to seek their observations and 
insights on the situation in the country more generally. 
Stakeholders were representatives of organisations 
or bodies with an interest in the topics of this study. 
The organisations represented varied from country to 
country but wherever possible included a representative 
of a user‑led organisation or group, representatives of 
government departments, representatives of ombuds‑
man offices or national human rights institutions and 
representatives of professional bodies working in the 
field (e.g. psychiatrists and social workers).

 n Peer review meeting

A two‑day meeting with the participation of disabled 
persons organisations and groups representing people 
with mental health problems and people with intel‑
lectual disabilities from the countries covered by the 
fieldwork. The aim of the meeting was to validate and 
prioritise the draft findings. The meeting took place in 
Vienna in November 2011.

 n Photo‑voice methodology

Further one‑to‑one discussions were conducted with 
63 of the original respondents (36 (excluding France) of 
whom had mental health problems, and 27 (excluding 
France and Greece) of whom had intellectual disabilities) 
based on photographs taken after the first interview by 
the person in question of images which they regarded 
as important to their lives. This technique, known as 
‘photo‑voice’, is a method which involves providing the 

Methodology

research participants with a camera, asking them to 
take photographs and then explain the stories behind 
the images.130 Photo‑voice is generally regarded as an 
empowering method because it provides people with the 
power to decide which aspects of their lives they choose 
to document and which stories they choose to tell.

130 For further information, see Nind, M. (2008) Conducting 

qualitative research with people with learning, 
communication and other disabilities: Methodological 
challenges, National Centre for Research Methods, 
available at http://eprints.ncrm.ac.uk/491/1/
MethodsReviewPaperNCRM‑012.pdf;‑ also Aldridge, J. (2007) 
‘Picture this: the use of participatory photographic research 
methods with people with learning disabilities’, Disability & 
Society, 22(1), pp. 1–17.

“Living in a ‘normal’ community and the importance 
of independent mobility.”

(German respondent)

 “This is the room at the community‑based centre 
where I attend group sessions.”

(Bulgarian respondent)

 “I feel safe using this technical aid so that I don’t 
forget to turn off the cooker and the coffee‑maker.”

Other important aspects of everyday life documented 
by one of the respondents related to daily activities 
and to letting other people know more about it: 
‘Come and have a look!’

(Swedish respondent)

(Swedish respondent)

7979

Choice and control: the right to independent living

After their interview, participants who were willing to 
take part in the photo‑voice methodology were given 
a disposable camera and asked to take photographs of 
people, places, objects and whatever else they regarded 
as relevant to their lives and the issues discussed in 
the interview. When the photographs had been taken, 
the participant met the country researcher again and 
explained the meanings of the photographs. The infor‑
mation gathered from these discussions enriched the 
data already gathered from relevant participants in the 
initial interview.

The primary purpose of using photo‑voice was to ena‑
ble participants to use photographs they had taken to 
deepen their communication with the researcher, to 
provide a focus for additional discussion about aspects 
of their lives and, thereby, to enrich interview data. The 
photographs communicate relevant aspects of partici‑
pants’ lived experience, and with the permission of rele‑
vant participants, some have been included in this report.

secondary data collection

Secondary  data  and  contextual  information  on 
community living, institutional living, legal capacity and 
access to justice was provided through desk research 
covering all EU Member States between October 2010 
and October 2011. The desk research examines legal 
and policy developments, as well as examples of good 
practice drawing on government and non‑governmental 
sources, such as academic research, NGO reports and 
other literature and publicly available information. The 
accuracy of the data and information provided was 
assessed by national authorities.

Desk research was also carried out between January 
2011 and May 2011 on EU and international level devel‑
opments. The findings are integrated in the present 
report and other relevant FRA reports.

“It is a picture of the faceless crowd, which, stands 
behind the same banner and this unites them. He is 
just one of them, fighting for a society with solidarity 
and against injustice. “Like we step on ants, this is 
how they step on us”. “I try to achieve balances. 
I want neither revolutionary dividing lines nor being 
apathetic.”

(Greek respondent)

“The flight of birds means freedom to him. They open 
their wings and fly and their only danger are the 
stronger birds and men. At the same time this picture 
means condescension. This is what he feels when he 
sees birds sitting on wires.” 

(Greek respondent)

This nice scenery makes him feel “special […] for 
living twice, after attempts of suicide, a divine 
fortune tells me that I am special, at least that it was 
not time for me to leave this world yet”.

(Greek respondent)

“It’s really important to have information that’s 
accessible. We help people make things accessible.”

(United Kingdom respondent)

8080

annex 3: external research team members

Core research team

Neil Crowther, Independent expert, United Kingdom  
(from 15 November 2011)
Edurne Garcia Iriarte, National Institute for Intellectual 
Disability, Dublin, Ireland
Anna Lawson, Leeds University, United Kingdom
Oliver  Lewis,  Mental  Disability  Advocacy  Center, 
 Budapest, Hungary

Country researchers

Jasna Russo, Mental Disability Advocacy Center,  Budapest, 
Hungary
Rachel Stevens, National University Ireland (NUI) – Gal‑
way, Ireland
Rannveig Traustadottir, University of Iceland, Iceland

EU  
Member State

Austria

Belgium

Bulgaria

Cyprus

Name

Tobias Buchner

Geert van Hove

Slavka Kukova

Organisation

Lebenshilfe

Vrije Universiteit Brussels

Bulgarian Helsinki Committee

Simoni Symeonidou

University of Cyprus

Czech Republic

Jan Siska

Charles University, Faculty of Education

Denmark

Steen Bengtsson

Danish National Institute of Social Research

Estonia

Finland

France

Germany

Greece

Eve Pilt

Estonian Patients Advocacy Association

Antti Teittinen

Finnish association on intellectual and developmental disabilities

Dominique Velche

Centre Technique National d’Études et de Recherches 
sur les Handicaps et les inadaptations (CTNERHI)

Petra Gromann

University of Fulda, Institut personenzentrierte Hilfen

Maria Mousmouti

Centre for European Constitutional Law

Hungary

Tamas Gyulavári

Eötvös Loránd University (ELTE),  Labour Law Department, 
Budapest

Ireland

Italy

Latvia

Rachel Stevens

National University of Ireland (NUI) – Galway

Maura Benedetti

University of Rome, Faculty of Psychology

Ieva Leimane‑Veldmeijere

Resource Centre for People with Mental Disability “ZELDA”

Lithuania

Dovile Juodkaite

Global Initiative on Psychiatry, Vilnius Office

Luxembourg

Arthur Limbach‑Reich

University of Luxemburg

Malta

Anne‑Marie Callus

Kummissjoni Nazzjonali, Persuni b’Dizabilita

Netherlands

Anna vd Zwan

Stichting Perspectief

Poland

Ewa Wapiennik

Academy of Special Education

Portugal

Sandra Marques

Federação Nacional de Cooperativas de Solidariedade Social 
(FENACERCI)

Romania

Georgiana Pascu

Centre for Legal Resources

Slovakia

Slovenia

Spain

Sweden

Maros Matiasko and 
Zuzana Durajova

Darja Zavirsek

Agustin Huete

University of Ljubljana, School of Social Work

InterSocial

Rafael Lindqvist

University of Gothenburg

United Kingdom Sarah Woodin

University of Leeds

8181

Choice and control: the right to independent living

Consortium management

Scientific members:

Human  European  Consultancy  –  Piet  Leunis  and 
Andrea Trotter
Mental Disability Advocacy Center – Oliver Lewis
Centre  for  Disability  Studies,  University  of  Leeds  –  
Mark Priestley
Centre for Disability Law and Policy, National University 
of Ireland (NUI) – Galway – Gerard Quinn

Michael Bach, Canadian Association for Community 
Living
Mark Priestly, Leeds University
Gerard Quinn, NUI Galway
Lisa Waddington, Maastricht University 

advisory board

European NGOs:

European Network of Independent Living – represented 
by John Evans
European  Disability  Forum  –  represented  by  Javier 
Guemes
European  Network  of  (ex)  Users  and  Survivors  of 
 Psychiatry – represented by Debra Shulkes
European Platform of Self Advocates – represented by 
Senada Halilcevic
Inclusion Europe – represented by Geert Freyhoff

8282