Human Rights Watch Submission to the CRPD Committee:
General Recommendation on Article 12 of the Convention—Equal recognition
before the law
March 13, 2014
Human Rights Watch welcomes the opportunity to provide input to the
Committee on the Rights of Persons with Disabilities (CRPD Committee) for
its General Recommendation on equal recognition before the law.1
The implementation of article 12, on the right to legal capacity, forms the
foundation
of
many
other basic
human
rights. Because
persons with
disabilities have historically been subject to legal and actual limitations on
their
exercise
of
legal
capacity,
the
rights
to
self-determination
and
recognition as persons under the law have particular significance for this
population.
The issues raised in this submission are based on research and advocacy
conducted by Human Rights Watch, in particular our reports “Once You
Enter, You Never Leave”: Deinstitutionalization of Persons with Intellectual
or Mental Disabilities in Croatia; “Like a Death Sentence”: Abuses against
Persons with Mental Disabilities in Ghana; and “I Want to be a Citizen Like
Any Other”: Barriers to Political Participation for People with Disabilities in
1
Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res. 61/106, Annex I,
U.N.GAOR Supp. (No. 49) at 65, U.N. Doc. A/61/49 (2006), entered into force May 3, 2008, art. 12.
Peru, and ongoing monitoring of the right to legal capacity for persons with
disabilities. 2
This submission focuses on the following issues:
1. The need for further guidance on the implementation of supported
decision-making regimes in practice, particularly for people with high
support needs;
2. The need for specific mechanisms to ensure that supported decisionmaking arrangements are recognized, accommodated, and supervised;
3. The duty of states parties to not only ensure that children with
disabilities are registered at birth, but to promptly register children
and adults who have not been registered and provide them with
identity documents;
4. The need for recognition of the existence of informal restrictions on the
decision-making capacity of persons with disabilities irrespective of
their legal status; and
5. The role of national monitoring in ensuring the realization of the right
to legal capacity.
This document does not review every aspect of legal capacity; rather, it
underscores several concerns that figure most prominently in our research
and that significantly influence the degree to which persons with disabilities
are able to exercise other rights enshrined in the CRPD.
1. Further Guidance on the Implementation of Supported Decision-Making
Procedures
The CRPD obligates states parties to provide such support as may be needed to
exercise one’s legal capacity.3 Supported decision-making is a framework in
2
Human Rights Watch, ‘Once You Enter, You Never Leave”: Deinstitutionalization of Persons with Intellectual or Mental
Disabilities in Croatia, September 2010, http://www.hrw.org/reports/2010/09/23/once-you-enter-you-never-leave;
Human Rights Watch, “Like a Death Sentence”: Abuses against Persons with Mental Disabilities in Ghana, October 2,
2012, http://www.hrw.org/reports/2012/10/02/death-sentence; Human Rights Watch, “I Want to be a Citizen Like
Any Other”: Barriers to Political Participation for People with Disabilities in Peru, May 15, 2012,
http://www.hrw.org/reports/2012/05/15/i-want-be-citizen-just-any-other.
3
CRPD, art. 12 (3).
which a support person enables a person with a disability to make and
communicate decisions with respect to personal or legal matters.4 Subsections
(3) and (4) of article 12 have profound implications for many states’
guardianship regimes and affirm the requirement that states shift from
substituted decision-making to supported decision-making systems. Subsection
(3) requires states to take appropriate measures to provide access for persons
with disabilities to the support necessary to exercise their legal capacity to the
fullest extent. Subsection (4) concerns the need to guard against the abuse of
such support through appropriate and effective safeguards.
Supported decision-making may take many forms:
Those assisting a person may communicate the individual’s
intentions to others or help him/her understand the choices at
hand. They may help others to realize that a person with
significant disabilities is also a person with a history, interests
and aims in life, and is someone capable of exercising his/her
legal capacity.5
The
Committee
implementation
should
of
consider
supported
providing
specific
decision-making
guidelines
procedures.
on
the
Implementing
supported decision-making, particularly for people with high support needs
who live with severe mental and intellectual disabilities or chronic health
issues that make it difficult for them to communicate decisions, is a
particularly subtle and complex task. While paragraph 25 of the DGC
represents an important step in clarifying the normative content of the
supported decision-making principles provided for in article 12, further
guidance would assist states parties in reforming their domestic laws and
policies to comply with the CRPD.
4
5
United Nations, General Assembly Human Rights Council, “Thematic Study by the Office of the United Nations High
Commissioner for Human Rights on Enhancing Awareness and Understanding of the Convention on the Rights of
Persons with Disabilities,” A/HRC/10/48, January 26, 2009, para. 45.
United Nations Enable, “Handbook for Parliamentarians: Legal Capacity and Supported Decision Making,”
http://www.un.org/disabilities/default.asp?id=242.
The General Comment on article 12 also presents an opportunity for the
Committee to identify good practice for the implementation of article 12.6 The
Committee
should
consider
endorsing,
as
one
example,
the
supported
decision-making system known as the Eindhoven Model. The model was
developed as an alternative to forced psychiatry, and relies on Family Group
Conferencing
(FGC)
to
provide
support
for
persons
with
psychosocial
disabilities to make decisions, particularly in times of crisis.7 FGC relies on a
network of family members, friends, neighbours, or peers to help the person
with a disability identify a range of desirable solutions. The network works
together to develop a list of possible options, assist the person with a disability
in making a specific decision where applicable, and composes a plan for
achieving the desired outcome.8 Use of the Eindhoven Model for implementing
supported decision-making is consistent with the spirit and purpose of article
12.
2. Need for Specific Mechanisms to Ensure that Supported Decision-Making
Arrangements are Recognized, Accommodated, and Supervised
The Committee should consider providing specific guidelines on mechanisms
that satisfy the requirement for safeguards in article 12(3). There is
substantial risk for a person with disabilities who is in an inappropriate
support relationship to suffer restrictions on their exercise of legal capacity
and the right to make decisions. Adding language on specific mechanisms for
states parties to implement to give effect to article 12(3) and specific
“threshold” requirements for the assessment of support measures, as noted in
article 12(4), would help protect persons with disabilities from exploitation
and abuse and allow them to challenge their support status. Doing so would
be consistent with paragraph 25 of the DGC, particularly subsections (d), (g),
6
This is particularly important given that some laws that legislatively recognize “support” may not necessarily comply
with article 12. The Canadian province of Manitoba is one example. At first blush, Manitoba’s The Vulnerable Persons
Living with a Mental Disability Act seems to embrace supported decision-making, yet the Act limits itself to support
networks and could be interpreted as excluding the broader range of supports to which individuals should have access
under article 12(3) of the Convention. Michael Bach & Lana Kerzner, A New Paradigm for Protecting Autonomy and
the Right to Legal Capacity, October 1, 2010, www.lco-cdo.org/disabilities/bach-kerzner.pdf (accessed February 24,
2014), p. 81.
7
FCG was originally developed in New Zealand in the 1980s to care for children and adolescents who commit crimes,
and has been described as the “lynch-pin” of the country’s youth justice system. Government of New Zealand, “Youth
Court of New Zealand,” http://www.justice.govt.nz/courts/youth (accessed March 12, 2014).
Jolijn Santegoeds, “The Eindhoven Model and Family Group Conferencing: An Alternative to Forced Psychiatry,”
presentation given at the Conference of State Parties to the CRPD, July 17, 2013.
8
and (h), which state that a third party should be able to challenge the
decision of a support person, that a recipient of support must have the right to
refuse support and modify the support relationship, and that safeguards must
be provided for “all processes” related to legal capacity. Given the unique
nature of an individual’s disability, particular guidance on how support can
be “tailored to the person’s circumstances” pursuant to article 12(4) would be
useful.
One way for the Committee to suggest specific safeguard mechanisms is to
recommend that states parties model their laws on those of jurisdictions that
represent positive examples of how the protections in article 12 should be
implemented. Michael Bach has suggested that a system of monitors should be
established to protect the decision-making rights of the individual and
oversee the work of the support person. The role can be modeled after that
created by British Columbia’s Representation Agreement Act, a law already
endorsed by the UN as good practice, taking into account the successes and
limitations of that system.9 The monitor can either be appointed by the
person requiring support or a court, and is responsible for ensuring that the
representative or facilitator is complying with his or her duties. Monitors can
require the representative or facilitator to produce accounts or records. If the
person requiring support wishes to challenge any aspect of their support
status, the monitor can make attempts to resolve the issue.10 A court can serve
as a means of last resort by adjudicating such disputes.
The Committee should consider emphasizing that any mechanism created to
allow a person to challenge an aspect of their support arrangement should
take into account the inevitable barriers that people with disabilities
encounter on a daily basis, particularly with respect to pursuing legal
avenues. These include difficulty in understanding court processes, a lack of
appropriate accommodation during hearings, or even having their right of
participation challenged on the basis of perceived incapacity. For these
reasons,
mechanisms
intended
to
act
as
safeguards
for
the
support
arrangement should be expeditious, fair, accessible and not be burdensome to
9
10
United Nations, “Legal Capacity and Supported Decision-Making,” http://www.un.org/disabilities/default.asp?id=242.
Bach & Kerzner, A New Paradigm for Protecting Autonomy, p. 118.
persons with disabilities.11 In addition, the Committee should note that when
a person with a disability enters into a formal support relationship, the state
has an obligation to perform periodic reviews to determine whether the
person should continue to remain in that relationship.12
Finally, Human
Rights Watch urges the Committee to include language on the need for state
parties to ensure the right to counsel in any court proceedings concerning the
supported decision-making arrangements.
3. Implementation of Programs to Provide Identity Documents to Unregistered
Children and Adults with Disabilities
The Committee should make specific reference to the need for measures to
promptly register children and adults with disabilities who have not been
registered and given identity documents at birth. Human Rights Watch’s 2012
investigation into the barriers to political participation in Peru revealed that
thousands of Peruvians with disabilities were not able to exercise their right
to vote, in many cases because they lacked the required identity cards. The
government of Peru has acknowledged that a disproportionate number of
undocumented Peruvians are persons with disabilities. A 2005 report issued
by the Public Ombudsman identified a significant number of residents in
psychiatric institutions—41 residents in one institution alone—who did not
have names and identity documents. According to the National Registry of
Identification
and
Civil
Status
of
Peru,
many
of
them
remain
undocumented.13
The DGC, at paragraph 39, reinforces the right of persons with disabilities to
a name and to registration of their birth as part of the right to recognition
everywhere as a person before the law. It is also important, however, for the
final General Comment to acknowledge that many adults with disabilities
have not been registered in birth records and remain “invisible citizens”
throughout
their
lives.
In
that
context,
the
Committee’s
Concluding
Observations on Peru highlighted that “a number of persons with disabilities,
11
CRPD, art. 12 (4): “The safeguards shall be proportional to the degree to which such measures affect the person’s
rights and interests.”
12
Bach & Kerzner, A New Paradigm for Protecting Autonomy, pp. 122, 173.
Human Rights Watch, “I Want to be a Citizen Like Any Other”: Barriers to Political Participation for People with
Disabilities in Peru, May 15, 2012, http://www.hrw.org/reports/2012/05/15/i-want-be-citizen-just-any-other, p. 52.
13
especially those living in rural areas and in long-term institutional settings,
do not have identity cards and, sometimes, have no name.”14 For this reason,
Human Rights Watch encourages the Committee to recommend that states
parties should introduce measures to register children and adults who have
not been registered at birth and to initiate programs to promptly provide
identity documents to unregistered individuals.
4. The Need for Recognition of Informal Restrictions on Decision-Making
Human Rights Watch urges the Committee to acknowledge the informal
restrictions on decision-making that persons with disabilities experience
when
exercising
their
right
to
legal
capacity.
While
formal
support
relationships are one way to assist an individual in exercising their right to
legal capacity, many persons with disabilities, particularly those without
registered status, experience constraints that limit the amount of control they
have over their own lives, often irrespective of their legal status. Some persons
with disabilities have never been allowed to identify situations in which
they could make decisions or choose among several courses of action. They
may be afraid of making decisions due to not understanding the possible
outcomes, or are simply not provided with choices to be made. For many
individuals with disabilities who retain their legal capacity but do not have
formal support persons, for example, their family members or doctors may
make decisions for them. While some families are an invaluable source of
support, others may restrict a person’s choices, particularly
with disabilities is dependent on them
when a person
financially.15
Human Rights Watch’s 2010 research on the deinstitutionalization of persons
with intellectual
and/or mental disabilities in Croatia revealed that many
people with disabilities who retain their legal capacity “choose” to live in
institutions because there is no alternative.16 In addition, irrespective of their
14
United Nations Committee on the Rights of Persons with Disabilities, 7th Session, “Concluding observations prepared
by the Committee on the Rights of Persons with Disabilities: Peru,” Geneva, April 16-20, 2012, para. 23.
15
European Union Agency for Fundamental Rights (FRA), “Legal Capacity of Persons with Intellectual Disabilities and
Persons with Mental Health Problems,” July 2013, http://fra.europa.eu/sites/default/files/legal-capacity-intellectualdisabilities-mental-health-problems.pdf (accessed February 24, 2014), p. 49.
16
Human Rights Watch, “Once You Enter, You Never Leave”: Deinstitutionalization of Persons with Intellectual or Mental
Disabilities in Croatia, September 2010, pp. 25-27.
legal status, once placed in an institution, there is little opportunity for
persons with mental and/or intellectual disabilities to make decisions
regarding their living arrangements, what kind of support to receive, or where
to be placed.17
As a result, persons with disabilities may face particular challenges to
making informed choices with respect to property, reproductive rights, and
healthcare
interventions,
among
other
decisions.
Many
persons
with
disabilities have never been asked for their opinion, and consider it normal
for family members to make decisions without consulting them.18
The
Committee should acknowledge the nuanced and often unreported impact of
these informal restrictions on persons with disabilities’ right to legal capacity
as within the ambit of article 12, and include language in its General
Comment on the duty of states parties to address these challenges.
5. The Role of National Monitoring in Ensuring the Realization of the Right
to Legal Capacity
Human
Rights
Watch
strongly
supports
the
DGC’s
emphasis
on
the
inextricable link between article 12 and the enjoyment of numerous other
human rights provided for in the CRPD.
In 2011 and 2012, we conducted field research in Ghana that included
visits to three public psychiatric institutions and eight “prayer camps”
(spiritual healing centers with little to no government oversight where people
with mental health disabilities are often taken by family members as an
alternative to formal mental health care or psychiatric hospitals). Human
Rights Watch interviewed nearly 170 individuals and documented a range of
human rights violations that flow directly from being stripped of the right to
make decisions about one’s own life, such as involuntary admission and
arbitrary
detention,
prolonged
detention
(including
chaining),
and
involuntary treatment (including electroconvulsive therapy).19
17
European Union Agency for Fundamental Rights (FRA), “Legal Capacity”.
18
Ibid.
19
Human Rights Watch, “Like a Death Sentence”: Abuses against Persons with Mental Disabilities in Ghana, October 2,
2012, http://www.hrw.org/reports/2012/10/02/death-sentence, p. 11.
In light of these abuses, we encourage the Committee to build on section IV of
the DGC by recognizing the interrelationship between legal capacity and
national monitoring (article 33) and the duty of states parties to consult with
persons with disabilities when developing and implementing relevant law
and policy in article 4(3).
Human Rights Watch encourages the Committee to consider providing concrete
and
practical
guidelines
on
how
the
national
bodies
responsible
for
administrating the independent monitoring framework provided for in article
33 should support and protect the right to legal capacity. For example, it
should be within the mandate of the monitoring body to promote supported
decision-making options as a means for persons with disabilities to exercise
their legal capacity. The monitoring framework should include mechanisms
for handling complaints and conducting public inquiries into violations of
article 12, as well as monitoring national legislation and policy regarding
compliance with article 12. Persons with disabilities, disabled persons
organizations, NGOs working on legal capacity, and national human rights
institutions
should
all
be
involved
in
monitoring
and
assessing
the
realization of the right to legal capacity.
Conclusion
Human Rights Watch hopes this submission is useful to the Committee’s work
on these matters. We would be happy to discuss issues relevant to your
General Comment on article 12. We look forward to continuing to support the
work of the Committee in promoting strong and effective implementation of
the CRPD.