C Explanatory memorandum
by Ms Reina de Bruijn-Wezeman, rapporteur
1 Introduction
1. On 20 May 2020, the Committee
on Social Affairs, Health and Sustainable Development tabled a motion for
a resolution on “Deinstitutionalisation of persons with disabilities”.
Note Proper
organisation and appropriate support in the process of deinstitutionalisation
is vital in order to uphold the fundamental rights of persons with disabilities.
Thus, the motion calls on the Parliamentary Assembly to study the
process of deinstitutionalisation in line with relevant legal standards
and calls on member States to ensure that autonomy, freedom of choice and
full and effective participation in the life of society and the
community are guaranteed to persons with disabilities. The motion
was referred to our committee for report and I was appointed rapporteur
on 6 July 2020.
2. On 16 March 2021, the Committee held a public hearing
Note composed of three sessions with the participation
of:
- Ms Dunja Mijatović, Council
of Europe Commissioner for Human Rights
- Mr Gerard Quinn, United Nations Special Rapporteur on
the rights of persons with disabilities
- Mr Andreas Accardo, Head of Unit, Institutional Co-operation
and Networks, European Union Agency for Fundamental Rights (FRA)
- Mr Luk Zelderloo, Secretary General, European Association
of Service providers for Persons with Disabilities (EASPD)
- Ms Ritva Halila (Finland), Chairperson of the Council
of Europe Committee on Bioethics (DH-BIO)
- Mr John Patrick Clarke, Vice President, European Disability
Forum (EDF)
- Ms Jolijn Santegoeds, Board member, European Network for
(ex)-Users and Survivors of Psychiatry (ENUSP)
- Ms Michelle Funk, Head of Unit, Policy, Law and Human
Rights, Department of Mental Health & Substance Use, World Health
Organization (WHO)
- Ms Stephanie Wooley, ENUSP
- Mr José María Solé Chavero, Board member, EASPD.
3. I would like to thank all colleagues and experts for the fruitful
discussions and their valuable input, which I have incorporated
into the text. I have further been informed by the process
Note which has developed in parallel to
this report at the level of the United Nations (UN). This process
is to lead to the adoption, by the end of 2022, of “Guidelines on
deinstitutionalization of persons with disabilities, including in
emergency situations” by the UN Committee on the Rights of Persons
with Disabilities. The first annotated outline of the proposed guidelines, on
living independently and being included in the community, were published
end 2021, following a bottom-up process of seven regional consultations
organised by the Committee’s Working Group on Deinstitutionalization with
the support of the Global Coalition on Deinstitutionalization composed
of representative organisations of persons with disabilities and
civil society organisations advocating for the rights of persons
with disabilities.
4. Deinstitutionalisation is a key steppingstone to ending coercion
in mental health. This report is thus also a follow-up to my report
on “Ending coercion in mental health: the need for a human rights-based
approach”
Note, which
led to the unanimous adoption of
Resolution 2291 (2019) and
Recommendation
2158 (2019), and which were also supported by the Council of Europe
Commissioner for Human Rights.
5. The Council of Europe Committee on Bioethics (DH-BIO) took
the procedural decision on 2 November 2021 to present the draft
Additional Protocol to the Convention for the protection of Human
Rights and Dignity of the Human Being with regard to the Application
of Biology and Medicine: Convention on Human Rights and Biomedicine
(ETS No. 164, Oviedo Convention) concerning the protection of human
rights and dignity of persons with regard to involuntary placement
and involuntary treatment within mental health care services to
the Committee of Ministers with a view to a decision, despite me
recalling the widespread opposition expressed with regard to the
draft Additional Protocol at that meeting. The representatives of
the EDF and of the EASPD also reiterated their position against
the draft Additional Protocol at the meeting.
6. While this report is not the place to analyse the draft Additional
Protocol in any depth, I believe it is my duty to recall that this
Protocol, in the eyes of the Assembly,
Note the Council
of Europe Commissioner for Human Rights,
Note the responsible UN mechanisms and
bodies,
Note and representative
organisations of persons with disabilities and civil society organisations
advocating for the rights of persons with disabilities,
Note goes in the wrong direction. Its
adoption would make the deinstitutionalisation of persons in mental
health care services more difficult. This is why my report will
touch upon this issue, and I will include a reference to the Assembly’s position
thereon in the draft recommendation.
7. The annotated outline of the guidelines on “Living independently
and being included in the community” proposed by the UN Committee
on the rights of persons with disabilities calls for both guardianship
and institutionalisation to be recognised as forms of discrimination
based on disability.
Note I briefly
touched on the issue of guardianship in my last report on “Ending
coercion in mental health: the need for a human rights-based approach”,
but did not go into detail, since this issue would merit its own
report. I will concentrate on the issue of deinstitutionalisation
in this report.
2 A human rights-based approach to disability
8. All human beings are born free
and equal in dignity and rights. A precondition for anyone to enjoy
their rights and fundamental freedoms is that they live in and are
included in the community. For a long time however, persons with
disabilities were viewed only as passive objects of care. A growing
understanding of disability and movements pushing for equal rights
have enabled a shift to a human rights-based approach in which society
must accommodate human diversity and enable persons with disabilities
to be an active part of it. Such an approach turns the focus away
from a person’s impairment and identifies social and attitudinal barriers
that prevent people with disabilities from enjoying their fundamental
rights.
9. The rights of persons with disabilities to equality and inclusion
are now recognised at the international level, in particular thanks
to the UN Convention on the Rights of Persons with Disabilities
(CRPD). The adoption of this Convention in 2006 represented a milestone
in recognising the fundamental rights of persons with disabilities
and has enabled a shift to a social, and human rights-based approach
on this issue. Under the CRPD, State parties are obliged to take
effective and appropriate measures with a view to achieving full inclusion
and participation of persons with disabilities in the community.
10. Persons with disabilities are often presumed to be unable
to live independently. This is rooted in widespread misconceptions,
including that persons with disabilities lack the ability to make
sound decisions for themselves and that they need “specialised care”
provided for in institutions. In many cases, cultural and religious
beliefs may also feed such stigma, as well as the historical influence
of the eugenic movement.
Note For too long, these arguments have
been used to wrongfully deprive persons with disabilities of their
liberty and segregate them from the rest of the community, by placing
them in institutions. Persons with psycho-social disabilities and/or
mental health problems have been particularly badly affected.
11. Following the adoption of the CRPD, which since 2018 is finally
ratified by all Council of Europe member States, States must ensure
the equal right of persons with disabilities to live in the community,
with choices equal to others. This involves ending their harmful
practice of placing persons with disabilities in institutions, which
is a violation of international human rights, and instead enable
their full inclusion and participation in the community.
12. Placement in institutions affects the lives of more than a
million Europeans
Note and is a pervasive violation of
the right as laid down in Article 19 of CRPD, which calls for firm
commitment to deinstitutionalisation. Many are isolated in their
own communities due to inaccessibility of facilities such as schools,
health care and transportation, as well as lack of community-based
support schemes.
13. However, a key challenge is to ensure that the process of
deinstitutionalisation itself is carried out in a way that is human
rights compliant. This includes respecting the rights of the user
groups, minimising risk of harm and ensuring positive outcomes for
the persons concerned
. Ensuring
that there are proper community-based care services available for
persons with disabilities, and thus a smooth transition, is pivotal
for a successful deinstitutionalisation process. The aim is not
mere deinstitutionalisation of the persons with disabilities, but
genuine transition to independent living in accordance with Article
19 of the CRPD, General comment No. 5 (2017) of the UN Committee
on the Rights of Persons with Disabilities on living independently and
being included in the community,
Note and the upcoming Guidelines on deinstitutionalization
of persons with disabilities, including in emergency situations.
3 Institutionalisation
of persons with disabilities: lack of alternatives that lead to
human rights violations
14. Institutions are defined by
the European Expert Group on the Transition from Institutional to
Community-based Care as any residential care where residents are
isolated from the broader community and/or compelled to live together;
residents do not have sufficient control over their lives and over
decisions which affect them; and the requirements of the organisation
itself tend to take precedence over the residents’ individual needs.
Note
15. Institutions may differ from one context to another. Yet,
there are certain defining elements which characterises them and
includes as follows: lack of control over day-to-day decisions;
rigidity of routine irrespective of personal preferences or needs;
identical activities in the same place for a group of persons under
a central authority; a paternalistic approach in the provision of
services; supervision of living arrangements without consent; obligatory
sharing of assistants with others and no or limited influence over whom
to accept assistance from; lack of choice over whom to live with
and disproportion in the number of persons with disabilities living
in the same environment.
NoteNote
16. Institutional care provides a poorer outcome in terms of quality
of life. The reason is that it is more challenging to ensure the
person-centred approach and appropriate support needed in order
to provide full inclusion of persons with disabilities.
Note Small environments, such as group
homes, are not much better if the overall control remains with supervisors.
For policy makers to have a thorough understanding of what it means to
live in an institutional setting, it is important to avoid the introduction
of newer forms of institutions that simply conceal the institutional
reality by introducing superficial changes.
17. According to the Office of the United Nations High Commissioner
for Human Rights (OHCHR), living arrangements should be assessed
taking into account issues such as the choice of housemates, who
decides when residents can enter or exit, who is allowed to enter
a person’s home, who decides the schedule of daily activities, who
decides what food is eaten and what is bought and who pays the expenses.
Regardless of size and name, living arrangements that control those
choices are inconsistent with the CRPD and constitute a deprivation
of liberty.
Note
18. Persons with disabilities are some of the most vulnerable
individuals in our society. Institutionalisation in and of itself
should be recognised as a human rights violation.
Note But
being placed in institutions further puts persons with disabilities
at risk of systemic and individual human rights violations and many
experience physical, mental, and sexual violence. They are also
often subjected to neglect and severe forms of restraint and/or
“therapy”, including forced medication, prolonged isolation, and
electroshocks.
Note
19. The interplay between disability and other identity traits,
such as gender, age or belonging to a minority, produces further
inequalities, as pointed out by the United Nations Special Rapporteur
on the rights of persons with disabilities. For instance, women
with disabilities are sometimes viewed as “burdens” and are at higher risk
of being placed in institutions based on stereotypes and misconceptions
that they are unable to fulfil the traditional role of mother and
caregiver. Studies have also shown that minority populations are
over-represented in psychiatric facilities.
NoteNote
20. Children are particularly vulnerable to institutionalisation
on the basis of impairment. In many cases, children are forcefully
removed from their families and placed in institutions because of
impairment. For example, in some countries, deaf and blind children
are institutionalised for no other reason than “facilitating” access
to education. Others are placed in institutions for the purpose
of “treatment” and “rehabilitation”. In a resolution adopted on
18 December 2019 on the rights of the child, the United Nations
General Assembly stressed that no child or family should be forced
to give up family connections in order to escape poverty, or to receive
care, comprehensive, timely and quality health services, or education.
Note
21. Persons with disabilities who are placed in institutions are
deprived of their liberty for long periods of time, and in some
cases even for a lifetime. Most of them are institutionalised against
their will or without their free and informed consent. Such practice
along with the poor treatment that they receive in institutions
affect their most fundamental rights, including the right to integrity
and the right to liberty.
22. For residents in institutions, neglect and inadequate health
care is too often a reality. The Covid-19 pandemic has highlighted
the way that vulnerable persons are disproportionately affected
in times of crisis. For persons with disabilities living in institutions
this is shown in the way in which they are exposed to additional serious
health risks in such settings, in addition to having particular,
often unmet, support needs in this challenging period. Thus, in
a statement on the impact of Covid-19 on persons with disabilities,
the Commissioner for Human Rights of the Council of Europe called
on member States to reduce the risks of Covid-19 for persons with
disabilities, including by moving those who live in institutions
out of these as much as possible.
Note
4 The
right to live independently and be included in the community
23. The right to live independently
and be included in the community is widely recognised in international and
regional instruments as one of the most fundamental rights and is
inevitably linked to the enjoyment of other human rights, including
the right to personal liberty and security, freedom from ill-treatment
or punishment, the right to integrity, the right to private and
family life, the right to privacy, the right to health, the right
to freedom of movement, and the right to freedom of assembly, association
and expression.
24. The most developed articulation for the right to live in the
community of persons with disabilities is found in the UN Convention
on the Rights of Persons with Disabilities. As laid down in Article
19, persons with disabilities, without exception, have the right
to live independently and receive appropriate community-based services.
This applies no matter how intensive the support needs. An important
aspect of quality service provision is that persons with disabilities
should be supported within their community.
Note
25. The overarching objective of Article 19 is full inclusion
and participation in society. Its three key elements are: choice
(sub-paragraph a); individualised supports that promote inclusion
and prevent isolation (sub-paragraph b); and making services for
the general public accessible to persons with disabilities (sub-paragraph c).
26. Article 19 is closely connected to provisions in other human
rights treaties, including the International Covenant on Civil and
Political Rights,
Note the International
Covenant on Economic, Social and Cultural Rights
Note and the Convention on the
Rights of the Child.
Note The
right to live independently and to be included in the community
is also recognised in regional instruments such as the Council of
Europe European Social Charter (ETS No. 35)
Note and has strong connections
to the right to liberty and security and the right to a private
and family life as laid down in the European Convention on Human
Rights (ETS No. 5).
Note
27. State parties to the CRPD have an obligation to comply with
its Article 19 by putting an end to segregation of persons with
disabilities and thus enabling them to have control over their lives.
The Convention contains the most recent norms relating to the right
to live independently and be included in the community. It should
thus be considered the minimum standards when developing future
human rights instruments at global and regional levels.
28. Fulfilment of the obligations under Article 19 of the Convention
is a precondition for the implementation of the Convention across
all articles - without independent living, persons with disabilities
cannot access any of their other rights. For reasons mentioned above
regarding the discrimination of persons with disabilities and their
lack of ability to fully take part in their communities, and as
a result of the adoption of the CPRD and other human rights instruments,
institutionalisation is increasingly acknowledged as poor policy
and a violation of human rights.
29. For cases concerning children, the best interests of the child,
as laid down in Article 3 of the UN Convention on the Rights of
the Child (CRC), must always be assessed and determined. State parties
to the Convention also have an obligation to ensure that the child
is heard and that his or her views are given due weight in accordance
with the age and maturity of the child when it comes to living arrangements
and the kind of support they need, in line with Article 12 of the
CRC. The inclusion of children with disabilities in society is at
the core of both Article 23 of the CRC and Article 7 of the CRPD.
30. Many persons with disabilities are wrongfully deprived of
their legal capacity, making it difficult to contest the treatment
they receive and their deprivation of liberty, as well as their
living arrangements. Choice, the key element sub-paragraph a of
Article 19, is upheld by recognising the legal capacity of the individual
to make their own choices and have them respected, in line with
Article 12 of the CRPD. Member States must therefore review their
legislative and administrative measures, including guardianship
and substitute decision-making, to ensure that persons with disabilities
are able to exercise choice and control over their lives on an equal
basis with others, with access to supported decision making when
needed.
Note
5 Commitment
to deinstitutionalisation in the Council of Europe member States
31. Existing studies show significant
differences in the availability of community services across Europe
to persons with disabilities, the provision of individualised support
and the opportunities to choose services.
32. Unfortunately, several Council of Europe member States still
hesitate to close down residential institutions and develop community-based
services for persons with disabilities, arguing that institutional
care is necessary for persons with multiple or “profound” disabilities,
or for persons of “unsound mind” (as the European Convention on
Human Rights calls them) on the spurious grounds that they may pose
a danger to public safety or that their own interests may necessitate
their detention in an institution. It is also worrying that in a
number of countries in the European region, institutionalisation
is in fact increasing,
Note in
spite of international obligations and long-standing calls from
international human-rights bodies to end such practices.
33. Institutionalisation of persons with disabilities is especially
prevalent in Eastern European countries. More should be done to
support these member States in ending this practice and provide
proper care and community-based services to persons with disabilities.
For this, the Council of Europe Development Bank (CEB) has played
an active role in funding and underwriting the restructuring of
institutional service provision and the building up of more inclusive,
community-based services.
34. During the 2021 autumn part-session of the Assembly, I had
the pleasure of meeting Mr Pavlo Sushko (Ukraine, EC/DA) who wanted
to tell me more about the deinstitutionalisation process in Ukraine.
Ukraine unfortunately has one of the highest rates of institutionalised
children in the world and the highest rate in Europe.
Note Following long standing calls from
international human rights bodies and civil society, the Government
of Ukraine has embarked on a process of reform and committed to
transform its national care system through the adopted National
Strategy on Reform of the Institutional Care System (2017-2026).
I share Mr Sushko’s concern over the fact that institutions are
shut down without any proper community-based alternatives.
35. Member States must allocate adequate resources for support
services that enable persons with disabilities to live in their
communities. This requires amongst other things a redistribution
of public funds from institutions to the strengthening, creating,
and maintaining community-based services. Strong political engagement
and commitment is needed on this matter, as pointed out during our
hearing on 16 March 2021. This may require targeted investments,
in particular in the initial phase, effective partnerships and prioritisation. The
CEB, the World Bank and other social development funds such as the
European Structural and Investment Funds can support such efforts.
It is important however that funds are directed towards sustaining
systemic reforms that enable member States to fulfil their obligations
under international law. In no way should funds be given to projects
that involve maintaining, refurbishing or building new institutions.
36. As illustrated in the deinstitutionalisation process of Ukraine,
and as pointed out by the OHCHR, there may be a need for community-based
services to exist alongside institutions during the transitional
phase and this would thus need double funding.
Note Studies have demonstrated,
however, that after the initial phase, community-based services
are not necessarily more expensive than institutional services.
In a report by the WHO and the World Bank, the transition from institutional
care to community-based services is in fact found to be more cost-effective
and to provide a higher quality of services.
Note Furthermore,
the comparison of the costs of institutional care and those of community-based
services should also take into account the long-term impact of deinstitutionalisation,
including the fiscal implications of a higher number of persons
with disabilities being part of the workforce and household income.
6 Ensuring
a genuine transition to independent living and inclusion in the
community
37. The United Nations Committee
on the Rights of Persons with Disabilities, the WHO, persons with disabilities
themselves and other human rights activists and stakeholders have
repeatedly urged States to adopt adequately funded strategies for
deinstitutionalisation with clear time frames and benchmarks, in
co-operation with organisations of persons with disabilities. They
should be actively involved in the implementation of Article 19,
including in the development and implementation of legislation,
policies and programmes, as stipulated in Article 4, paragraph 3
of the CRPD.
38. A systemic approach to the process of deinstitutionalisation
is needed in order to achieve good results. Disability has been
linked to homelessness and poverty in several studies.
Note If member States fail to secure income
and housing assistance to persons with disabilities, they will have
increased risk of ending up involuntary committed or institutionalised.
Following this, the transformation of residential institutional
services is only one element of a wider change in areas such as
health care, rehabilitation, support services, education and employment,
as well as in the societal perception of disability and the social
determinants of health.
Note Simply relocating
individuals into smaller institutions, group homes or different
congregated settings is insufficient and is not in accordance with
international legal standards.
39. Support services are an indispensable element of the transition
from institutions to community living and are essential to enable
persons with disabilities to live independently and be included
in the community. Article 19 b of the CRPD includes a reference
to a range of services that can involve different providers. Services provided
should be built around concepts of person-centeredness and individualisation,
in order for them to be sensitive to the person’s needs and wishes.
Services must be flexible enough to support the individual’s need and
not the other way around. Universal design should be included in
the service design and innovation in service provision should be
fostered through structural involvement of persons with disabilities
and their families.
Note
40. Support may include individualised assessment, information,
counselling, auxiliary aid, support in finding a job, life planning,
housing, and income assistance. Personal assistance is also an effective
means to ensure the right to live independently and be included
in the community in ways that respect the inherent dignity, individual
autonomy, and independence of persons with disabilities.
Note This can include individually
designed support for personal hygiene, meals, dressing, mobility
and communication with others.
Note
41. Choice and control over the support needed to live and be
included in the community are of paramount importance in the area
of support services, in particular when it comes to personal assistance.
As they know their own needs best, persons with disabilities must
be the ones who hire, employ, supervise and dismiss their own assistants
and should be able to choose between different service providers.
This is seen as important to make services more accountable and
at the same time reduce the risk of abuse within care.
42. For many years, institutions have contributed to the centralising
of “care” for persons with disabilities. Thus, the process of deinstitutionalisation
must naturally involve decentralising of services and building up infrastructure
so that persons with disabilities are not discriminated against
when it comes to the availability of services within the community.
A necessary step in this relation is that mainstream community services
and facilities must adapt to the needs of persons with disabilities,
as was also pointed out by our colleague Ms Sevinj Fataliyeva (Azerbaijan,
EC/DA) in her report entitled “Supporting people with autism and
their families”.
Note
43. Access to mainstream services is a good illustration of how
costs may be reduced in the long-term by ensuring that community
services and facilities for the general population are available
on an equal basis to persons with disabilities and are responsive
to their needs. More importantly, it is a human right and enables member
States to fulfil their obligations under Article 19 c of the CRPD.
Apart from health care, it can also include the right to attend
school in the community, the use of the general transport system
and to have access to work in the open job market, depending on
individual aspirations and qualifications. Sheltered work is inconsistent
with Article 27 of CRPD and, in effect, prevents inclusion and interaction
with the community as pointed out by the OHCHR.
Note However, EASPD
argue that innovative forms of sheltered work can be useful to provide
a bridge between persons with disabilities and the labour market,
as often it represents the only possibility for persons with disabilities
to make a step into the world of work.
Note In the report on autism, Denmark and
Austria were highlighted as member States with good practices in
this regard, for example through the social enterprise Specialisterne
that specialised in preparing people from the autism spectrum for
suitable jobs, using a mixture of training, coaching, and support
measures.
Note
44. Training is also essential in order to ensure that support
is in conformity with the standards of the CRPD, responds to needs
and respects the individual’s will. The WHO QualityRights initiative
can provide essential guidance on the implementation of mental health
services and on community-based responses from a human rights perspective.
The recommendations are accompanied by seven technical packages,
each encompassing a specific category of service required for a
fully responsive mental health system (crisis services, hospital-based
services, networks of services, and others). At the end of each
package, examples of practical actions are included, to facilitate
implementation. QualityRights offers a path towards ending institutionalisation
and involuntary hospitalisation and treatment of persons with disabilities.
The initiative can be a useful tool for care givers in health as
it complies with the CRPD and the 2030 Agenda for Sustainable Development frameworks.
Note DH-BIO has published a compendium
with examples of good practices to promote voluntary measures in
the field of mental healthcare.
Note
45. If the process of deinstitutionalisation is not managed properly,
and without due consideration of the special needs of each individual
and his or her family, this can have severe and unfortunate consequences, such
as the person concerned not being able to fully integrate into the
community and thus having to be re-institutionalised, the person
ending up homeless, or even in prison.
Note Community living arrangements should not
be established and monitored by the institution itself. Consequently,
appropriate monitoring mechanisms in member States must be put in
place to ensure that the support given in the deinstitutionalisation
process is adequate. The ombudsperson of each member State could
play an important role in this.
46. The annotated outline of the proposed CRPD guidelines on living
independently and being included in the community, includes a requirement
for States parties to “Recognise that institutionalization also
occurs in the private sphere, in urban or rural areas, through institutions
run and controlled by non-State actors, including charities and
church-run organisations. Recognise also that States have duties
in ending these type[s] of institutions.”
Note It is
indeed important that institutions run by non-State actors are fully
included in any deinstitutionalisation strategies.
7 Deinstitutionalisation
of children
47. Deinstitutionalisation of children
must be a top priority. Scientific research into children’s early development
shows that even a relatively short institutional placement can negatively
affect brain development and have life-long consequences on emotional
well-being and behaviour.
Note Institutionalisation
of children with disabilities is clearly not in the best interests
of the child, but in many cases, parents feel they have no choice but
to put their children in institutions due to poverty and lack of
support, or a false belief that children with disabilities are better
protected by placing them in institutions. As reiterated by UNICEF,
no child or family should be forced to give up family connections
in order to escape poverty, or to receive care, comprehensive, timely
and quality health services, or education whether that is special
or inclusive.
Note Children do not belong in institutions.
48. Member States must ensure adequate support services and necessary
information are provided to children with disabilities and their
families. As the upcoming CRPD Guidelines on deinstitutionalization
of persons with disabilities point out,
Note States
must ensure support for children with disability in the family,
and when the family is unable to care for a child with a disability,
provide alternative care within the wider family and, failing that,
within the community in a family. Building up family support, respite
care services, the provision of child services within the community,
different child protection strategies, inclusive education, and the
development of disability-inclusive family-based alternative care
are all important measures that would contribute to a successful
transition from institutional care to community living for children
with disabilities. Moreover, providing assistance and learning to
families to understand disability in a positive way may help them
understand how to support their children in accordance with their
age and maturity.
Note Conversely, listening
to children with disabilities and their families will make it easier
for the State to adapt services to actual needs. After all, persons
with disabilities and their families know best what their needs
are, as pointed out by our colleague Ms Fataliyeva in her report
on autism.
Note
49. Recognising their important role in supporting persons with
disabilities, families are sometimes given compensation. In many
countries this is given in the form of social security benefits,
allowances and pension schemes. However, exclusive reliance on support
from the family can have adverse consequences and lead to the endorsement
of gender stereotypes of women as caregivers. Mothers are often
exposed to higher levels of stress and fatigue in these situations.
Likewise, it may affect other siblings in a negative way. Family
support may also affect the choice and control that persons with
disabilities exercise over the type of support required. In situations
where families do not receive sufficient support from the State,
this often results in a reduction of the number of working members
in the family and thus a lower household income, and a possible
slip into poverty – with further negative effects on all family
members. Sometimes families are simply not able to provide full
support to persons with disabilities as needed. More resources should
be allocated to provide viable options to these families in order
to alleviate their burdens without resorting to institutionalisation.
8 Conclusions
and recommendations
50. In institutions, persons with
disabilities have limited capacity and possibilities of taking part
fully in society because of the physical separation from their families
and the rest of the community they live in. Institutionalisation
of persons with disabilities is ripe with serious human rights violations.
The human rights violations are compounded further if institutionalisation
is resorted to in childhood.
51. As an alternative to institutionalisation, scholars, practitioners,
and persons with disabilities alike have found that community-based
support services and supportive living arrangements provide a better
quality of life for persons with disabilities, as well as being
more human rights compliant and cost-effective.
52. As “proper” deinstitutionalisation (a genuine transition to
independent living in accordance with Article 19 of the CRPD) is
vital in order to uphold the rights of persons with disabilities.
Concrete action must be taken towards ending the institutionalisation
practice and ensuring that these persons and their families are
met with appropriate support in the process of reintegrating into
society. At the same time, measures must be taken to combat the
“culture of institutionalisation resulting in social isolation and
segregation of persons with disabilities, including at home or in
family, preventing them from interacting in society and being included
in the community”,
Note a
culture which also persists in many of our member States.
53. We need to move on from the outdated paternalistic and medical
models of disability and the widespread use of coercion against
persons with disabilities, in particular in mental health settings,
and embrace the paradigm shift to a human rights model of disability.
Indeed, the CRPD Committee is looking to strengthen the role of
regional international organisations in promoting deinstitutionalisation
processes in line with the CRPD.
Note This means refraining from adopting
the draft Additional Protocol to the Oviedo Convention concerning
the protection of human rights and dignity of persons with regard
to involuntary placement and involuntary treatment within mental
health care services, which is anchored in the outdated medical
model, incompatible with the CRPD, incapable of protecting persons
with mental health conditions or psychosocial disabilities from
violations of their human rights – and quite frankly, not worthy
of a human rights organisation like the Council of Europe.
54. The Council of Europe and its member States should follow
the provisions of the UN Convention on the Rights of Persons with
Disabilities, the UN Convention on the Rights of the Child, the
European Social Charter, the European Convention on Human Rights,
and other international legal standards implement measures reinforcing
the transition from institutional to community-based services. Parliaments
need to take the necessary steps to progressively repeal legislation
authorising institutionalisation of persons with disabilities, as
well as mental health legislation allowing for treatment without
consent and detention based on impairment.
55. The process of deinstitutionalisation requires a long-term
strategy that ensures that good quality care is available in community
settings.
Note As institutionalised persons
are being reintegrated into society, there is need for comprehensive
social services and individualised support in the deinstitutionalisation
process in order to support these persons and their families. Support
must be timely and sustainable, accompanied by specific access to
services outside institutions to enable people to obtain,
inter alia, care, work, social assistance
and housing. Thus, it is vital that the social determinants of health
are also addressed.
56. Persons with disabilities have different needs. This entails
the need for a holistic approach between all relevant stakeholders
so as to ensure that they are guaranteed their right to full and
effective participation in the life of society and the community.
An individualised approach is key to providing preparedness for
those who have been or are still living in or growing up in institutions
to participate fully in their community and wider society. Gender
and other stereotypes also need to be addressed.
57. For cases concerning children with disabilities, the deinstitutionalisation
process must be child centred. Resources must be mobilised so as
to ensure that children with disabilities can live with their families
while at the same time having their needs met and their human rights
realised, such as the right to education. Family caregivers also
need to be given adequate support.
58. Above all, member States must actively include persons with
disabilities and their representative organisations in the implementation
of Article 19 and when considering policies, legislation, and development of
programmes in the deinstitutionalisation process. Persons with disabilities
know their own needs best. Member States must listen to them and
act according to their needs.
59. Independent mechanisms are needed in order to properly monitor
the process of deinstitutionalisation and ensure its success. Funding
must be directed towards sustaining systemic reforms that enable
member States to fulfil their obligations under international law.
It is of paramount importance that member States commit to refraining
from projects that involve maintaining or building new institutions.
60. Neither member States, nor the Committee of Ministers, should
support or endorse draft legal texts which would make successful
and meaningful deinstitutionalisation more difficult, and which
go against the spirit and the letter of the CRPD – such as the draft
Additional Protocol to the Oviedo Convention concerning the protection
of human rights and dignity of persons with regard to involuntary
placement and involuntary treatment within mental health care services.
Instead, the Council of Europe and its member States need to embrace
and apply the paradigm shift of the CRPD
Note and fully guarantee the fundamental
human rights of all persons with disabilities.
