Written Comments on draft General Comment on Article 12 of the
Convention on the Rights of Persons with Disabilities, submitted to
the UN Committee on the Rights of Persons with Disabilities
27 February 2014
Introduction
1.
MDAC applauds the work of the Committee in formulating a draft general
comment (GC) as to the meaning and implementation of Article 12 of the
CRPD. As the draft GC notes, Article 12 is of fundamental importance to the
realisation of rights of people with disabilities, and the deprivation of the right
to legal equality has been of particular relevance regarding people with
intellectual disabilities or people with psychosocial disabilities. Like the
Committee, MDAC believes that proper implementation of Article 12 is central
to the implementation of the remainder of the Convention.
2.
MDAC has been working on legal capacity from its establishment in 2002. With
NGO and lawyer partners, we have litigated some of the leading cases
challenging guardianship regimes in Europe. Our latest report on legal
capacity summarises the situation in Europe: see “Legal Capacity in Europe: A
Call to Action to Governments and the European Union”, available here:
http://mdac.info/en/news/end-civil-death-call-action-right-legal-capacityeurope.
3.
MDAC supports the overall direction of the GC as consistent with the text of
the Convention and the academic and other comment concerning it. In our
view, the draft GC is fundamentally right, most notably in its insistence on a
move from substituted to supported decision-making. The following
comments are to be read in that light.
Hercegprímás utca 11, H-1051 Budapest, Hungary • tel: +361 413 2730 • e-mail: mdac@mdac.info • website: www.mdac.info
The Mental Disability Advocacy Center is an international human rights organisation which advances the rights of children and adults
with intellectual disabilities and psycho-social disabilities. Our vision is a world of equality – where emotional, mental and learning
differences are valued equally; where the inherent autonomy and dignity of each person is fully respected; and where human rights are
realised for all persons without discrimination of any form.
Article 12(1)
4.
The CRPD represents a paradigm shift in the international law relating to
persons with disabilities. MDAC, of course, supports this paradigm shift. We
would note, however, that it is conceptually new to much of the world, including
many governments, regulators, service providers and families and carers of
people with disabilities, and to some people with disabilities too. It is not merely
that they will find the CRPD requirements challenging (although they certainly
will), it is also MDAC’s experience that many people who bear the duty of
implementing the Convention find it incomprehensible. For this reason, in our
view it would be helpful to provide some more detail in the GC, expanding
further what is required by the relevant elements of Article 12. We do not
propose fundamental alteration of the nature of the guidance, and we do
appreciate that it is, in the end, a matter for States Parties to determine the way
in which they will comply with the Convention, but some additional guidance
would in our view assist this. The fact that there are so many reservations and
declarations on Article 12 is evidence which strongly supports this view.
5.
The guidance in the draft GC on Article 12(1) is an obvious example. Many in the
human rights community understand the meaning of ‘legal personality’ and its
consequent requirements, but it is our experience that government officials in
some countries do not. It would therefore be helpful to expand on this in a
couple of sentences about what this means, including perhaps an illustrative list
noting registration of birth, the right to citizenship, issuance of identity papers,
the right to engage in legal relations as a subject of law (eg., concluding leases
and contracts, bringing litigation), and entitlement to any benefits of law
(including human rights law) provided to citizens of the country such as social
security and housing rights and democratic rights such as voting.
Articles 12 (2) and (3)
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6.
These are perhaps both the most potentially transformative and the most
challenging provisions in the CRPD. While MDAC of course supports the move
to supported decision-making from substitute decision-making, there are
aspects of the shift that are – even to supporters – exceptionally challenging. It
is here where additional guidance is essential.
People with higher support needs
7.
The first concerns people who have multiple or profound disabilities. The ‘pure’
example is of the person in a coma with whom communication is not possible,
but in our view that is not a distinct case, but rather one end point on a
continuum of ability (or ‘mental capacity’ as the draft GC says). Clearly, it would
be wrong (and a violation of Article 16 and depending on context potentially
other Articles of the Convention) simply to desert people with profound
disabilities on the basis that a person trying to help cannot get understandable
instructions from them.
8.
How are we meant to proceed in such cases? In some cases, the person will
have expressed views in the past which a potential supporter might perhaps use.
In the Committee’s view, is this in compliance with Article 12? The question is in
our view problematic. On the one hand, MDAC takes the view that systems of
advance planning are desirable, and an essential element of empowerment of
people with disabilities (see further below). Particularly when views have been
expressed as part of such a system of advance planning, in our view they should
be followed. Views are not always expressed in such a context, however, and
taking into account an individual’s prior will and preferences in this situation can
involve a considerable amount of guesswork. Even in situations where the
person had previously been of robust ability, the empirical evidence suggests
that supportive decision-makers (be they family members or professionals) are
not very good at making those assessments: they get these decisions wrong a
lot of the time. These problems are of course magnified when the individual has
always been in a position of manifestly limited ability, and the values and
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preferences that the individual would have brought to the decision are therefore
undeterminable.
9.
If the practical problem is that we may get these decisions wrong, the normative
problem is that, in the end, the support person has taken over the decision, and
is in effect making a substituted decision. This would seem to be in violation of
Art 12 as articulated by the Committee, but the Committee gives no guidance as
to how States are arrange laws and policies to deal with these situations. The
increasing power of people providing support in decision-making further raises
issues under Article 12(4), which we will note below.
10.
This is not, of course, an argument for the status quo ante in most countries.
MDAC does acknowledge and abhor the way in which existing systems of
substitute decision-making and guardianship are used in the bulk of the world,
and has for over a decade been active internationally in challenging those
systems in courts and other human rights mechanisms. We would favour
amendment of the GC by the inclusion of more explicit references to taking all
reasonable measures to communicate with the person with disability, including
use of BLISS and other systems designed for people with learning disabilities
and of course sign language for Deaf people. The abuse of systems of substitute
decision-making in practice in most of the world does not, however, remove the
real difficulties for a small but significant number of people, where meaningful
instructions cannot be obtained.
Advance Planning
11.
As noted, MDAC favours mechanisms by which people can plan for periods in
their life when they may be unable to make decisions. In our view, the provisions
of structures to make such plans are part of the general obligation on States to
provide reasonable accommodation for the needs of people with disabilities.
Assuming the Committee agrees with this, it would be helpful to see an express
reference to that effect in the GC.
12.
The approach of the GC can, however, create serious difficulties for advance
planning. The traditional structure of such advance planning is that an
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individual, P, makes decisions while having mental capacity to do so (however
defined) about what he or she wishes to happen when he or she becomes
incapable (however defined) of making the decisions covered by the advance
plan. This may involve, for example, appointing someone to make decisions for
him or her under an instrument analogous to a power of attorney, articulating
who should take care of the individual’s business and on what basis the
business should be run, or articulating what medical treatments should or
should not be provided. Until the point where P loses capacity to make those
decisions, the plan may be updated or amended, but at a time when P does not
have capacity, the plan is in effect and cannot be changed.
13.
Different systems of law in different countries vary as to the specifics of the
schemes available, but this is the general pattern. Such systems of advance
planning are in MDAC’s view of considerable importance to many people. It is
not merely that they allow control of the individual over their life in situations
where meaningful views cannot be ascertained at the time decisions must be
taken (see above), although that is of course important in its own right.
14.
It is also important in situations where people may not want wishes expressed
to be honoured in specific situations. People with cyclical manifestations of their
disability that may result in extreme exuberance (traditionally diagnosed as
‘bipolar disorder’ or ‘manic depression’) are perhaps a good example. People
when on the ‘high’ swing may make huge purchases that will bankrupt and
impoverish themselves, or take risks in business that may bankrupt the firm and
deprive the individual of a livelihood when the high swing ceases. It seems that
Article 12 may preclude intervention in such situations in the absence of an
advance plan, since it does seem difficult to see how these unwise decisions are
legally to be distinguished from other decisions perceived as unwise.
15.
The matter for the Committee’s attention now, however, is whether an advance
plan made by P which specifically envisages the ‘high’ swings and provides
instructions as to what should happen during them should be followed, and the
decisions made by P in those ‘high’ moments consequently not acted upon. The
difficulty is that during the ‘high’ where the decisions are expressed, they do
represent P’s wishes at that time and, on the standard reading of Art 12
expressed in the draft GC, should be honoured even if they are in direct conflict
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with the advance plan and indeed the sort of decision that the advance plan was
intended to address. If the decisions expressed in the ‘high’ moments are not
honoured, however, what is the justification? To date, it has been because P
lacks capacity, but that would seem to be precisely the justification ruled out by
Article 12.
16.
It may perhaps be that this sort of advance planning arrangement may be
included in the range of ‘measures that relate to the exercise of legal capacity’
under Article 12(4). If so, it would be helpful for this to be clarified, but we would
counsel the Committee to be circumspect in its guidance in this regard. If such
advance planning mechanisms are within the scope of 12(4), would other
interventions not also arguably be included, such as court orders regarding
decisions taken by P during a ‘high’ swing that were not covered by the advance
plan? If that were the case, substitute decision-making would effectively be reintroduced, and MDAC would argue that this would be a bad thing.
Mechanics of Supported Decision-Making
17.
MDAC would note that there is little discussion in the draft GC of the mechanics
of supported decision-making. This response relates in part to substantive
matters: how is supported decision-making to be done? In the event of a variety
of different wishes or values apparently expressed by the person with disability,
how is it to be decided how to proceed? Presumably, it will frequently be the
case that the actual implementation of decisions will fall to the supporter, not
the person with disability (eg., once a decision has been reached by the person
with disability, through the supported decision-making structure, as to where he
or she will live, the actual negotiation of the contract with the landlord or care
home will fall to the supporter, not the person with disability). What is the
nature of the authority of the supporter in those situations? As many of these
situations will involve legal relations (such as contracts), legal systems need
clarity on this to ensure that the other party to transactions (the landlord in the
above example) will know that the legal relations are established in law and
enforceable.
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18.
Equally more detail would be helpful on administrative matters. Is the support
to be provided by family members, or professionals with a certain distance from
the decision to be taken? Particularly if it is the latter, how is it to be funded?
Does the Committee have a view on whether the funding of the provision of
support can be means-tested? Is support to be viewed as an economic and
social right and thus subject to progressive realisation under Article 4(2) of the
Convention? If not, is it realistic for States to be expected to immediately
implement Article 12 upon ratification, given the infrastructure issues? We
suspect that many people without disabilities would benefit from investment
advice just as much as people with disability, for example; is the right to support
triggered by the existence of a disability (and thus articulated as an example of
reasonable accommodation), or as a service that is available to all?
Role of Lawyers
19.
We entirely support the comments in the draft GC at paragraphs 34 and 35. We
would note however that in our experience, lawyers are also in dire need of
training and reminding of their role when representing clients with disabilities.
In particular, they should operate on instructions, rather than on the basis of
perceived beneficence (‘best interests’) of the client. Further, lawyers should
understand that the protection of the rights of people with disabilities is as
important as for any other client.
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