Memorandum by Open Society Mental Health
Initiative (MHI)
1. THE OPEN
SOCIETY MENTAL
HEALTH INITIATIVE
(MHI)
MHI is a program of the Open Society Institute.
It seeks to ensure that people with mental disabilities (mental
health problems and/or intellectual disabilities) are able to
live as equal citizens in the community and to participate in
society with full respect for their human rights and currently
works in Central and Eastern Europe and the former Soviet Union.
MHI promotes the social inclusion of people with mental disabilities
by supporting the development of community-based alternatives
to institutionalization and by actively engaging in policy based
advocacy. MHI is both a grant making and an operational program,
providing training and technical assistance to its partner organisations.
The focus of MHI's activities is to end the
unjustified and inappropriate institutionalization of people with
mental disabilities by advocating for the closure of institutions
and for the development of community-based alternatives. Over
the past 12 years MHI has provided sustained and strategic financial
and technical support for the development of community-based alternatives
to institutionalisation in the region.
2. GENERAL COMMENTS
ON THE
GREEN PAPER
MHI welcomes and supports the European Commission's
initiative in establishing an EU-strategy on mental health. The
mental health of the EU population is of crucial relevance to
the EU's strategic policy objectives such as bringing tangible
practical benefits to the quality of life for European Citizens
(question 1, page 13). As the Green Paper makes clear, there are
many areas in which the mental health of the EU population can
be improved and it is of crucial importance that steps are taken
to address the causes and effects of mental ill health. Thus MHI
considers that the development of a comprehensive EU-strategy
would "add value to the existing and envisaged actions"
(first part of question 2, page 13). However, MHI has two major
concerns with the Green Paper:
— Greater emphasis on deinstitutionalisation[71]
is required: there is insufficient emphasis on the need
to ensure that all EU Member States commit to, and implement,
deinstitutionalisation policies. Unless policy and practice is
focused on the development of comprehensive community-based services,
resources will continue to be tied up long-stay institutions.
This will perpetuate the social exclusion of people with mental
disabilities. It will also limit the opportunities to initiate
action to address what the Green Paper acknowledges as "a
first priority", namely "to provide effective and high-quality
mental health care and treatment services, accessible to those
with mental ill health". Deinstitutionalisation should be
included in the priorities of the EU-strategy (second part of
question 2, page 13).
— Lack of clarity on the target
group: it is not clear whether people with intellectual disabilities
(described as people with learning disabilities or learning difficulties
in the UK) are included in these proposals. MHI advocates for
including people with intellectual disabilities in the target
group of the Green Paper. In the new Central and Eastern European
Member States of the European Union, people with mental health
problems and people with intellectual disabilities are often relegated
to the same long-stay institutions. Because people with intellectual
disabilities make up a substantial portion of the population in
long-stay institutions, it is crucial that EU mental health policy
also addresses the needs of this group. If people with intellectual
disabilities are to be included in this strategy, then this needs
to be made explicit and those organisations working in the intellectual
disability field should be invited to participate in the consultation
process.
Set out below is a more detailed explanation
of MHI's concerns and additional comments on various aspects of
the Green Paper, including the appropriateness of the initiatives
outlined in sections 6 and 7 of the Green Paper (question 3, page
14).
3. GREATER EMPHASIS
ON DEINSTITUTIONALISATION
IS REQUIRED
Context
Traditionally, governmental policy across Central
and Eastern Europe (CEE) has been to segregate people with mental
disabilities in long-term residential institutions, such as psychiatric
facilities, social care homes and orphanages. Children and adults
with mental disabilities who are isolated in institutions, regardless
of their age, sex, or type of disability are often subjected to
the most severe forms of cruel, inhuman and degrading treatment
and other human rights violations.
Despite many positive political and economic
developments across CEE in the last 15 years, the situation for
people with mental disabilities has received little attention
and is largely unchanged. To date, membership in, or candidacy
for membership of, the European Union has done little to promote
the social inclusion of people with mental disabilities. In the
Member States of the European Union, new institutions for people
with mental disabilities continue to be built despite the fact
that some governments have stated their intent to close institutions.
None of the new EU Member States have concrete plans or financing
mechanisms to develop networks of community-based alternatives.
While there are pockets of high quality community-based services
in the region, and a number of governments have stated their intentions
to move toward a community-based model, tens of thousands of people
with mental disabilities are still living in institutions.
Segregating people, barring them from access
to education and employment, denying them the right to choose
where and how they live and who they associate with, solely on
the basis of a mental disability label is unacceptable. The nature
of institutions is, in itself, dehumanising. The existence of
institutions is an anathema to the concept of a civil and open
society in which the rights of all citizens are respected.
Deinstitutionalisation must be a priority for
the EU-strategy on mental health
While MHI welcomes the reference to deinstitutionalisation
in the Green Paper, the Paper fails to make clear that the unjustified
segregation of people with mental disabilities in long-stay institutions
is not acceptable and constitutes a severe human rights violation.
Governments must, as a priority, develop and implement policies
that require the closure of long-stay institutions and the development
of community based alternatives.
The Green Paper mentions psychiatric facilities
and mental health reforms in connection with the move away from
institutions towards community-based services. This is only part
of the picture. Many people with "chronic conditions",
or those who are elderly, are placed in social care homes. Children
and young people with mental disabilities are commonly placed
in orphanages, often because there is no support available to
their parents to be able to provide for them at home. Thus action
is required to assist governments in reforming their social welfare
systems and in developing legal and financial mechanisms which
underpin the transfer of all types of institutional care to the
provision of community-based services.
A further concern is that the Green Paper refers
to an assessment by Member States and the Commission on "how
the Structural Funds can be better used to improve long-term care
facilities and health infrastructure in the field of mental health"
(page 7). It is not clear what is meant by "long-term care
facilities" or who would be considered to need them. MHI's
view is that it would be a grave error for EU policy to promote
the improvement of long-term care facilities, since, with the
exception of some forensic patients, people with mental disabilities
do not need long term care, but rather need support that that
is community-based.
MHI believes that in many countries the lack
of knowledge and expertise within governments about how to develop
capacity in the community and close institutions is a major disincentive
to such work being carried out. Thus the development of an EU-strategy
is a timely opportunity not only for the crucial importance of
deinstitutionalisation to be highlighted but also for initiatives
at EU level to be proposed. MHI therefore suggests that deinstitutionalisation
should be one of the focus areas of the EU-strategy, in addition
to the other four areas identified on page 8 of the Green Paper
(mental health promotion; addressing mental health through preventative
action; improving the quality of life of people with mental ill
health or disability through social inclusion and the protection
of their rights and dignity and the development of mental health
information, research and knowledge system for the EU). Deinstitutionalisation
is crucial step towards addressing these four areas. Unless policy
and practice is focused on the development of comprehensive community-based
services, resources will continue to be tied up long-stay institutions.
This will perpetuate the social exclusion of people with mental
disabilities. It will also limit the opportunities to initiate
action to address what the Green Paper acknowledges as "a
first priority", namely "to provide effective and high-quality
mental health care and treatment services, accessible to those
with mental ill health".
MHI suggests that the Commission proposes a
Council Recommendation on the need for long-stay institutions
to be closed in conjunction with the development of alternative
community-based services.
4. LACK OF
CLARITY ON
TARGET GROUP
It is not clear whether the Green Paper is intended
to address the needs and interests of people with intellectual
disabilities. Much of the paper appears to be focused on issues
relating to mental health, such as action to prevent suicide and
references to mental health reforms. However there are parts of
the paper which suggest that people with intellectual disabilities
may be included. For example, page 6 refers to "the social
inclusion of people with mental disabilities" and on page
11 it is suggested that the EU-Platform on Mental Health will
be able to "identify best practice for promoting the social
inclusion of people with mental ill health and disability ...".
If people with intellectual disabilities are to be included in
this strategy then this needs to be made clear and those organisations
working in the intellectual disability field should be invited
to participate in the consultation process.
MHI would argue that people with intellectual
disabilities should be included in this strategy. While there
are significant differences between people with intellectual disabilities
and people with mental health problems, many of the issues faced
by both these groups of people are similar—such as serious
human rights abuses, social exclusion, stigma and prejudice.
5. ADDITIONAL
COMMENTS
The need for a comprehensive approach
MHI welcomes the Green Paper's emphasis on the
need to take a comprehensive approach to the development of mental
health policy and ensure that all stakeholders are engaged in
the process (page 5). However, MHI would like to see this approach
reflected more clearly in the suggested areas of action. For example,
while the Green Paper refers to reforms within psychiatric services,
little attention is given to social welfare reform which will
be of crucial importance to the development of community-based
services. Action to facilitate the meaningful participation of
people with mental health problems (and if the strategy relates
to them, people with intellectual disabilities) will be crucial.
Furthermore, it will be vital that the work initiated under the
EU-strategy for mental health is closely linked to—informs,
and is informed by—EU initiatives on wider disability issues.
Protecting the rights of people with mental disabilities
The Green Paper refers to compulsory placement
in psychiatric institutions, pointing out that this should only
happen as a last resort. Again, it should be noted that people
are placed in a variety of institutions, not just psychiatric
institutions, without their consent. While MHI agrees that such
placements should only occur as a last resort, the European Convention
on Human Rights sets out further conditions that should be met
before a person can be lawfully detained. [72]Furthermore,
the concept of "last resort" is arguably meaningless
if there is no support available to individuals with mental disabilities
living in the community.
Many countries in CEE have a system of "guardianship"
under which a court can appoint a person to have the power to
make decisions on behalf of a person deemed to lack the capacity
to make decisions for him/herself. The guardian often has extensive
powers, for example the power to require the person subject to
guardianship to move into an institution thereby circumventing
any legal formalities which would have been otherwise required
if the person did not consent to the admission.
The activities of the new Fundamental Rights
Agency of the EU should not be limited to addressing the situation
in psychiatric institutions. Rather, its work should include all
long-stay institutions and other areas in which the rights of
people with mental disabilities are being violated, such as guardianship
which allow others to exercise arbitrary and invasive powers over
people with mental disabilities.
Action to address stigma and discrimination
The Green Paper rightly acknowledges the problems
caused by the stigma and discrimination faced by people with mental
health problems. Such widespread and severe stigma and discrimination
is a serious and substantial barrier to the social inclusion of
people with mental disabilities. Member States must take concrete
steps to address these barriers if they are to succeed in the
first three of the suggested priorities (promoting mental health,
addressing mental ill health through preventative action and improving
the quality of life of people with mental ill health or disability
through social inclusion and the protection of their rights and
dignity).
The possible initiative to identify, through
the consultation process, "best practice for promoting the
social inclusion and protecting the rights of people with mental
ill health and disability" (page 12) would hopefully generate
a range of activities that could address stigma and discrimination
and promote the social inclusion of people with mental disabilities.
For example:
— Awareness raising in schools, among
employers and the wider population—this could be part of
broader work on disability issues.
— Ensuring that people with mental
disabilities are aware of their rights. For example the EU Employment
Framework Directive[73]
requires that Member States introduce legislation which outlaws
the discrimination of disabled people in employment. People with
mental disabilities should be protected by such legislation.
— Providing information and advice
to employers to assist them in meeting requirements to provide
"reasonable accommodation" at the workplace for people
with mental disabilities.
— Considering barriers to social inclusion
and taking steps to address these. For example, as mentioned above,
in some CEE countries the guardian for a person with mental disabilities
deemed to lack capacity has extensive powers. The ward has no
right to make important and personal decisions such as to vote
or to marry, irrespective of his or her actual capacity to make
such decisions.
People with mental health problems and intellectual
disabilities must be involved at every stage of the consultation
on, and the development and implementation of, such proposed activities.
Open Society Mental Health Initiative
1 February 2006
71 We use this term to mean the process by which the
closure of long-stay institutions is planned and implemented in
conjunction with the development of a range of community-based
services as alternatives to institutional care. Back
72
See, for example Winterwerp v the Netherlands (1979). Back
73
Council Directive 2000/78/EC, 27 November 2000-established a
"general framework for equal treatment in employment and
occupation". It covers discrimination on the grounds of age,
disability, religion or belief and sexual orientation in employment
and occupation. Back
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