2 Independent living as a human right
What is independent living?
8. The Government, adopting wording originally proposed
in 2002 by the Disability Rights Commission, have defined independent
living as "all disabled people having the same choice, control
and freedom as any other citizenat home, at work, and as
members of the community. This does not necessarily mean disabled
people 'doing everything for themselves', but it does mean that
any practical assistance people need should be based on their
own choices and aspirations"[11].
A personal account of independent living
John Evans gave a personal account of the meaning of independent living in evidence to us:
"What does independent living mean to me? I think that is a very deep, life
changing question and it means a lot of things. I suppose I could say it has
changed my life and I know it has changed the lives of many other disabled
people whom I have come into contact with [...] It is very hard I think to get that message across to people who perhaps are not dependent on others to support them in their day-to-day living. But it has provided me with a life, my work-I have worked widely-and the opportunities and the choices to do the things I want, like you do. I think with the restrictions somebody like myself has, with the kind of severe impairment I have, it is freedom. It is the freedom for me to be able to do what I want to do, when I want to do it, in a way, because I have people around me who can support me to do that."[12]
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9. Independent living is as relevant to people living
in residential care as it is to someone living in their own home,
and as relevant to people with significant cognitive impairments
as to a university graduate. In its inquiry on the rights of
adults with learning disabilities, our predecessor Committee supported
independent living as a basis for Government policy, explaining
that, as a concept, it was important that independent living did
not mean leaving people without support:
"When we refer to independent living, we refer
to the Disability Rights Commission interpretation, which promotes
choice and autonomy for people with disabilities in their daily
lives. This may mean different things for different people. It
should not be confused with situations where people with learning
disabilities have been moved to supported living in the community
without adequate support. One of the first things that we learned
in this inquiry was that a 'one size fits all approach' was not
appropriate.
We consider that the principles of independent living
and promoting the participation of disabled people in community
life are core themes of the UN Disability Rights Convention. It
has a clear basis in other human rights standards and principles,
such as freedom, equality and autonomy."[13]
10. Independent living, in short, is freedom for
disabled people. Individual freedom has long been cherished by
our common law tradition. The Disabilities Convention simply
recognises that for some people positive steps have to be taken
in order to secure that freedom.
Relevant provisions of the Disabilities
Convention
11. The UNCRPD's stated purpose is to "promote,
protect and ensure the full and equal enjoyment of all human rights
and fundamental freedoms by all persons with disabilities, and
to promote respect for their inherent dignity."[14]
It reaffirms the existing human rights of disabled people and
sets out the practical action that is required to remove barriers
and put in place the support to make the human rights of persons
with disabilities an everyday reality. The key articles for understanding
the right to independent living as enshrined by the Convention
are Articles 3, 4 and 19. The effect of these three crucial provisions
is summarised below. Their full text is included in the Annex.
12. Article 3 of the Convention sets out a number
of general principles which are intended to guide States in their
interpretation of the subsequent provisions of the treaty.
These include:
- Respect for the inherent dignity,
individual autonomy (including the freedom to make one's own choices),
and independence of persons;
- Non-discrimination;
- Full and effective participation and inclusion
in society;
- Respect for difference and acceptance of persons
with disabilities as part of human diversity and humanity.
13. Article 4 of the Convention sets out the range
of obligations which are assumed by States which choose to ratify
the Disabilities Convention[15].
The general obligations set out in Article 4 are extensive.
Significantly, they explicitly recognise that States are under
an obligation to take positive actions in order to comply with
the Convention. The obligations recognised in Article 4 include
(most relevantly for the purposes of our inquiry) the following:
- To ensure and promote the full
realisation of all human rights and fundamental freedoms for all
persons with disabilities without discrimination of any kind on
the basis of disability;[16]
- To adopt all appropriate legislative, administrative
and other measures for the implementation of the rights in the
Convention;[17]
- To take all appropriate measures (including legislation)
to modify or abolish existing laws, regulations, customs and practices
that constitute discrimination against persons with disabilities;[18]
- To take into account the protection and promotion
of human rights of persons with disabilities in all policies and
programmes;[19]
- To ensure that public authorities and institutions
act in conformity with the Convention;[20]
- To take all appropriate measures to eliminate
discrimination on the basis of disability by any person, organisation
or private enterprise;[21]
- To take measures to the maximum of its available
resources with a view to achieving progressively the full realisation
of the economic, social and cultural rights in the Convention;[22]
- To consult closely with and actively involve
persons with disabilities, through their representative organisations,
in the development and implementation of legislation and policies
to implement the Convention, and in other decision-making processes
concerning issues relating to persons with disabilities.[23]
14. Article 19 of the Convention is a key provision:
it deals with living independently and being included in the community
and is of such importance to this inquiry that we set it out in
full:
"States Parties to the present 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."
15. Article 19 has been interpreted as a logical
extension of the right to equal recognition before the law in
Article 12 of the Convention, in the sense that recognition of
legal capacity restores the "power of persons with disabilities
to decide about their own lives, while the right to independent
living paves the way for persons with disabilities to choose how
to live their lives."[24]
Article 19 can be seen as what lawyers call a "lex specialis",
that is, a more specific or concrete expression of a general underlying
norm when that norm is given effect in a particular context.
It gives more specific meaning to the general rights to liberty
and security of person and to private and family life in the particular
context of disabled people and their living arrangements. Of particular
importance is the elimination of living arrangements that segregate
and isolate people with disabilities (e.g. institutionalisation),
unless that choice is made by the disabled person. Article 19
thus requires States Parties to ensure that people with disabilities
are able to live in the community with accommodation options equal
to others, and that these options support the inclusion and participation
of people with disabilities in the life of the community. Article
19 requires that States ensure that disabled people have the opportunity
to choose with whom they live on an equal basis with others.
16. In order to realise these freedoms, States Parties
are obliged to ensure that disabled people have access to a range
of support services that they may require in order to live freely
in the community, and to avoid isolation and segregation from
the community. The Convention also requires that steps are taken
to ensure that mainstream community services and facilities must
be available to disabled people on an equal basis with others
and responsive to their needs.
The legal status of the relevant
standards in the Disabilities Convention
17. In the course of our inquiry it became apparent
that Government ministers were under an unfortunate misapprehension
as to the legal status of the Disabilities Convention. In oral
evidence to us the Minister for Disabled People expressed her
view that the Convention was 'soft law': "Is it hard law
or soft law? [...] the UN Convention is soft lawif one
uses those termsbecause it is a Convention that does not
have legal standing, but it is very much a Convention which every
Department is signed up to [...] it does drive at the heart of
our approach although technically [...] it is a soft law approach."[25]
18. "Soft law" is the term generally used
to describe standards which do not have the status of being legally
binding on the State in international law, such as declarations,
minimum principles and similar internationally agreed documents.
Treaties, however, are legally binding on the state in international
law. A violation of a treaty obligation is an internationally
wrongful act which has serious consequences for the State in international
law. Obligations contained in treaties are always "hard
law".
19. The UK Independent Mechanisms[26],
in supplementary evidence, gave the following assessment of the
legal status of the Convention: "As a matter of international
law the CRPD, in its totality, is binding international lawi.e.
"hard" law. It is an international treaty which has
been entered into by State Parties and is subject to the law of
treaties and the principle of pacta sunt servanda. That
is the principle, codified in the Vienna Convention on the Law
of Treaties, that States enter into international agreements and
implement those obligations in good faith. The CRPD was ratified
by the UK Parliament on 8 June 2009. Since that date the UK has
had "hard" international law obligations under Article
19 of the CRPD."[27]
This analysis is clearly correct.
20. In addition to its status as an international
treaty which is legally binding on the UK, the Convention also
has a degree of more direct legal effect in the UK's legal system,
through the Human Rights Act 1998 and the European Communities
Act 1972. The European Court of Human Rights has begun to take
note of the Convention in the context of its interpretation of
the European Convention on Human Rights.[28]
The UK Courts are required by the Human Rights Act 1998 to take
account of ECtHR jurisprudence and the Government is bound by
its judgments in cases against the UK. The Convention also has
a particular status in EU law. The EU, as a "regional integration
organisation" has ratified the UNCRPD requiring it to interpret
EU law and regulation compatibly with the Convention, providing
the basis for consistent interpretation of EC (now EU) secondary
law including Regulations, Directives, Decisions, Recommendations
or Opinions.
21. What the Minister may have had in mind when describing
the Disabilities Convention as "soft law" is that fact
that it has not been incorporated into UK law and is therefore
not directly justiciable in UK courts: that is to say, an individual
cannot go to a UK court to complain about a breach of any of the
rights in the Convention. Implementation of the UN human rights
treaties is generally supervised by the "treaty bodies",
which are independent expert committees established under each
of the treaties, through a system of periodic State reports and,
under some of the treaties, petitions from individuals. The UNCRPD
requires its parties to report periodically to explain the extent
of State compliance. The responsible treaty body will then examine
the report, together with submissions of NGOs and others, and
will issue Concluding Observations highlighting positive and the
negative aspects of the State's level of compliance, and will
make recommendations for appropriate changes to law or practice
accordingly. These conclusions and recommendations are not strictly
speaking legally binding, but provide an authoritative interpretation
of the individual treaty obligations which are legally binding.
All of this is correct but it does not make the treaty "soft
law".
22. The Minister may also have had in mind that the
nature of some of the obligations imposed by the Convention are
of a different kind from those imposed by treaties such as the
European Convention on Human Rights, in that some of them are
subject to the principle of progressive realisation. The precise
nature of the legal obligations imposed by the Disabilities Convention,
and by Article 19 of that Convention in particular, is considered
in detail below. It is true that the nature of some of the legal
obligations imposed by the Disabilities Convention is different
from those imposed by other international human rights treaties
such as the ECHR. But this difference in the nature of the legal
obligations does not reduce the status of those obligations to
"soft law".
23. We are concerned
that characterising the obligations assumed by the Government
under the Disabilities Convention as "soft law" is indicative
of an approach to the treaty which regards the rights it protects
as being of less normative force than those contained in other
human rights instruments. The UNCRPD is hard law, not soft law.
The Government should fulfil their obligations under the Convention
on that basis, and must counter the public perception that it
is soft law.
The nature of the legal obligations
under the Disabilities Convention
OBLIGATIONS TO RESPECT, PROTECT AND
FULFIL
24. Like all international human rights treaties,
the Disabilities Convention imposes three distinct types of legal
obligation on States: obligations to respect, protect and fulfil
the rights contained in the Convention.
25. The obligation to respect means that States
must not interfere with the enjoyment of the rights of people
with disabilities. For example, they must respect their right
to education by not excluding them from school on the basis of
their disability and must respect their right to health by not
carrying out medical experiments on them without their free and
informed consent.
26. The obligation to protect means that States
must take positive steps to protect the rights of disabled people
against violation by third parties, including private individuals
and organisations. For example, the State must protect people
with disabilities against inhuman and degrading treatment by privately
run prisons or care homes, and must protect their right to work
by ensuring that private businesses cannot discriminate against
employees on grounds of their disability.
27. The obligation to fulfil means that States
must take appropriate actions (including legislative, executive,
administrative, budgetary, and judicial actions) towards the full
realisation of the rights in the Convention. For example, the
State must fulfil the right not to be abused or mistreated by
taking positive steps to ensure that adequate training and information
are provided to health professionals, police and prison officers,
and must fulfil the right of disabled people to take part in the
life of their community by taking steps to enhance accessibility.
OBLIGATIONS OF "PROGRESSIVE
REALISATION" AND "NON-RETROGRESSION"
28. As we pointed out in our recent Report on the
Welfare Reform Bill, where international human rights treaties
protect social, economic and cultural rights, the State is under
a particular type of legal obligation: it must take deliberate,
concrete and targeted steps towards the realisation of those rights
"to the maximum extent of their available resources."
29. The availability of resources is therefore of
central relevance in assessing the degree to which the UK is meeting
its obligations under such human rights treaties. However, the
duty of progressive realisation entails a strong presumption against
retrogressive measures. In its General Comment on the scope of
the UN Committee on Economic Social and Cultural Rights (ICESCR)
right to an adequate standard of living and to social security,
the ICESCR explained:
"There is a strong presumption that retrogressive
measures taken in relation to the right to social security are
prohibited under the Covenant. If any deliberately retrogressive
measures are taken, the State party has the burden of proving
that they have been introduced after the most careful consideration
of all alternatives and that they are duly justified by reference
to the totality of the rights provided for in the Covenant, in
the context of the full use of the maximum available resources
of the State party. The Committee will look carefully at whether:
(a) there was reasonable justification for the action; (b) alternatives
were comprehensively examined; (c) there was genuine participation
of affected groups in examining the proposed measures and alternatives;
(d) the measures were directly or indirectly discriminatory; (e)
the measures will have a sustained impact on the realization of
the right to social security, an unreasonable impact on acquired
social security rights or whether an individual or group is deprived
of access to the minimum essential level of social security; and
(f) whether there was an independent review of the measures at
the national level."[29]
30. So, while the principle of progressive realisation
within available resources affords States a degree of flexibility
in achieving the objectives of the Convention, it does not absolve
States of the responsibility to take active steps to protect and
fulfil those rights. "Retrogressive" measures, that
is, measures which represent a backwards step in terms of the
realisation of the rights concerned, require strict justification
and even then are not permissible if they are incompatible with
the "core obligations". Although States are free to
secure their minimum obligations through a variety of means, those
obligations have a "minimum core", and any failure to
meet the minimum standards envisaged will be in violation of the
international standards which the United Kingdom has accepted.[30]
31. In its recent General Comment on the scope of
the right to social security in the International Covenant on
Economic, Social and Cultural Rights, for example, the UN Committee
on Economic and Social Rights explained:
"The right to social security is of central
importance in guaranteeing human dignity for all persons when
they are faced with circumstances that deprive them of their capacity
to fully realise their Covenant rights."[31]
"To demonstrate compliance with their general
and specific obligations, States parties must show that they have
taken the necessary steps towards the realisation of the right
to social security within their maximum resources, and have guaranteed
that the right is enjoyed without discrimination and equally by
men and women"[32]
"Violations include, for example, the adoption
of deliberately retrogressive measures incompatible with the core
obligations [
] the formal repeal or suspension of legislation
necessary for the continued enjoyment of the right to social security;
[...] active denial of the rights of women or particular individuals
or groups. Violations through acts of omission can occur when
the State party fails to take sufficient and appropriate action
to realise the right to social security. In the context of social
security, examples of such violations include the failure to take
appropriate steps towards the full realisation of everyone's right
to social security; the failure to enforce relevant laws or put
into effect policies designed to implement the right to social
security [...]"[33]
32. Similarly, in its General Comment regarding the
right to housing, the UN Committee asserted that "a general
decline in living and housing conditions, directly attributable
to policy and legislative decisions by the States parties, and
in the absence of accompanying compensatory measures, would be
inconsistent with the obligations under the Covenant".[34]
33. The UN Committee has also emphasised the particular
responsibility on states to ensure that the most vulnerable do
not bear a disproportionate burden at times of public spending
cuts:
"The Committee wishes to emphasize, however,
that even where the available resources are demonstrably inadequate,
the obligation remains for a State party to strive to ensure the
widest possible enjoyment of the relevant rights under the prevailing
circumstances. Moreover, the obligations to monitor the extent
of the realization, or more especially of the non-realization,
of economic, social and cultural rights, and to devise strategies
and programmes for their promotion, are not in any way eliminated
as a result of resource constraints [...] Similarly, the Committee
underlines the fact that even in times of severe resources constraints
whether caused by a process of adjustment, of economic recession,
or by other factors the vulnerable members of society can and
indeed must be protected by the adoption of relatively low-cost
targeted programmes."[35]
THE LEGAL OBLIGATIONS IN ARTICLE
19 OF THE DISABILITIES CONVENTION
34. As we indicated above, the Disabilities Convention
does not recognise any new human rights for people with disabilities,
but is intended to complement existing international human rights
treaties by spelling out in more detail States' obligations to
respect, protect and fulfil the human rights of people with disabilities.
It is intended to assist States by clarifying the steps that States
need to take in order to ensure that disabled people enjoy their
human rights to the same extent as other people. Like the UN Convention
on the Rights of the Child, the Disabilities Convention therefore
draws on all of the existing international human rights treaties,
and includes a mixture of civil, political, social, economic and
cultural rights.
35. The right to live independently and be included
in the community in Article 19 of the Disabilities Convention
embodies this synthesis of civil and political, economic, social
and cultural rights. Article 19 (a) in particular concerns self-determination,
a recognisably civil and political right. Yet its realisation
is strongly dependent upon the availability of options, as envisaged
by Article 19 (b) which confers economic, social and cultural
rights, and upon access to mainstream community services and facilities
as envisaged by Article 19 (c). Ensuring equal access to and
responsiveness of community services and facilities in turn depends
upon measures to combat disability discrimination, including reasonable
adjustments in the context of goods, facilities and services.
36. A rigorous analysis of Article 19 is important
because, as we explained above, different types of rights impose
different legal obligations. Compliance with the obligations imposed
by Article 19 will therefore require the State to take a variety
of different actions and measures.
- Article 19 (a) implies rights
to self-determination in relation to matters affecting where and
with whom a disabled person lives and the means by which disabled
people are involved in decisions affecting them. This suggests
a need for legal and/or administrative mechanisms which protect
and promote choice and control regarding where and with whom disabled
people live.
- Article 19 (b) appears to recognise social and
economic rights of disabled people and as such obliges a contracting
State to "take measures to the maximum of its available resources
with a view to achieving progressively the full realization of
these rights, without prejudice to those obligations contained
in the present Convention that are immediately applicable according
to international law".[36]
- Article 19 (c) is more in the nature of a civil
and political right to non-discrimination in relation to accessing
goods and services, including the duty to make reasonable accommodations,
legislative measures for which are required with immediate effect,
but which in practice (such as in relation to making premises
accessible) may take time to be realised in practice.
37. The precise nature of these legal obligations
must always be borne in mind when considering the extent to which
the UK has implemented the right to independent living and when
making recommendations about the sorts of action which the State
should be taking in order to fulfil its treaty obligations in
that respect.
11 See for instance the 2009 Independent Living Strategy,
Improving the Life Chances of Disabled People, Prime Minister's
Strategy Unit, 2005, and Policy Statement on Social Care and
Independent Living, Disability Rights Commission, 2002. Back
12
Q 78 Back
13
See Seventh Report of 2007-08, paras 72-73 Back
14
Article 1 Back
15
In a recent statement, the Children's Commissioner has expressed
concerns about the impact of the Welfare Reform Bill on children,
citing Article 4 of the UN Convention on the Rights of the Child,
which imposes similar obligations. Back
16
Article 4(1). Back
17
Article 4(1)(a). Back
18
Article 4(1)(b). Back
19
Article 4(1)(c ). Back
20
Article 4(1)(d). Back
21
Article 4(1)(e). Back
22
Article 4(2). Back
23
Article 4(3). Back
24
Study on challenges and good practices in the implementation
of the UN Convention on the Rights of Persons with Disabilities,
European Foundation Centre, October 2010 Back
25
Q 232 Back
26
Article 33 of the Convention requires states to establish an "independent
mechanism" to promote, protect and monitor implementation
of the Convention. In the UK, the independent mechanism is jointly
the Equality and Human Rights Commission, the Scottish Human Rights
Commission, the Northern Ireland Human Rights Commission and the
Equality Commission for Northern Ireland. Back
27
IL 122 Back
28
See for example Stanev v Bulgaria (2012) in which Bulgaria was
held to have violated the rights of a man with mental health problems
to liberty, to a fair trial and not to be subject to degrading
treatment. http://echr.coe.int/ECHR/homepage_en
Back
29
General Comment No 19, The Right to Social Security, (2008),
paragraph 42. Back
30
Joint Committee on Human Rights, 21st Report of 2010-12,
HL Paper 233 HC 1704, para 1.30 Back
31
General Comment No 19, The Right to Social Security, 4 February
2008, E/C.12/GC/19, para 1. The Committee on Economic Social and
Cultural Rights is the relevant Treaty Monitoring Body for this
treaty. The purpose of these General Comments is to provide clear
guidance to States and others as to the Committee's approach to
the interpretation of key issues in the ICESCR. Back
32
Ibid. para 62 Back
33
Ibid. paras 64-65 Back
34
General Comment No. 4, The right to adequate housing, para
11 Back
35
General Comment No. 3, paras 11-12. Back
36
Article 4(2) of the Disabilities Convention. Back
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