37/56 Report of the Special Rapporteur on the rights of persons with disabilities- Note by the Secretariat
Document Type: Final Report
Date: 2017 Dec
Session: 37th Regular Session (2018 Feb)
Agenda Item: Item3: Promotion and protection of all human rights, civil, political, economic, social and cultural rights, including the right to development
GE.17-22328(E)
Human Rights Council Thirty-seventh session
26 February–23 March 2018
Agenda item 3
Promotion and protection of all human rights, civil,
political, economic, social and cultural rights,
including the right to development
Report of the Special Rapporteur on the rights of persons with disabilities
Note by the Secretariat
The Secretariat has the honour to transmit to the Human Rights Council the report of
the Special Rapporteur on the rights of persons with disabilities, pursuant to Council
resolutions 26/20 and 35/6. In her report, the Special Rapporteur provides an overview of
the activities undertaken in 2017 and a thematic study on the right of persons with
disabilities to equal recognition before the law. The study provides guidance to States on
how to guarantee this right for persons with disabilities, paying particular attention to the
process of law reform on legal capacity.
United Nations A/HRC/37/56
Report of the Special Rapporteur on the rights of persons with disabilities
Contents
Page
I. Introduction ................................................................................................................................... 3
II. Activities of the Special Rapporteur ............................................................................................. 3
A. Country visits ........................................................................................................................ 3
B. Engagement with stakeholders ............................................................................................. 3
C. Communications ................................................................................................................... 4
III. The right of persons with disabilities to equal recognition before the law .................................... 4
A. A paradigm shift towards universal legal capacity ............................................................... 4
B. The normative content of article 12 of the Convention on the Rights of Persons with
Disabilities ............................................................................................................................ 6
IV. Legal capacity law reform ............................................................................................................. 9
A. Law reform trends on legal capacity and supported decision-making .................................. 10
B. Learning from supported decision-making in practice ......................................................... 12
V. The way forward ........................................................................................................................... 14
A. Law reform .......................................................................................................................... 14
B. Policy development .............................................................................................................. 15
C. Research ................................................................................................................................ 15
D. Access to justice ................................................................................................................... 16
E. Participation and collaboration ............................................................................................. 16
F. Capacity-building ................................................................................................................. 17
G. Awareness-raising ................................................................................................................. 17
H. Resource mobilization .......................................................................................................... 18
VI. Conclusions and recommendations ............................................................................................... 18
I. Introduction
1. The Special Rapporteur on the rights of persons with disabilities, Catalina Devandas
Aguilar, submits the present report to the Human Rights Council pursuant to Council
resolutions 26/20 and 35/6. It contains a description of the activities she carried out in 2017
and a thematic study on the right of persons with disabilities to equal recognition as a
person before the law. In preparing the study, the Special Rapporteur analysed the
responses to a questionnaire sent to Member States, national human rights institutions,
agencies of the United Nations system, civil society organizations and persons with
disabilities and their representative organizations. She received 40 responses. 1 She also
relied on information gathered during an expert meeting on supporting the autonomy and
independence of older persons with disabilities, which took place in New York in October
2017.
II. Activities of the Special Rapporteur
A. Country visits
2. In 2017, the Special Rapporteur visited the Democratic People’s Republic of Korea
from 3 to 8 May (A/HRC/37/56/Add.1), Kazakhstan from 4 to 12 September
(A/HRC/37/56/Add.2) and France from 3 to 13 October (report to be submitted to the
fortieth session of the Council). She thanks the Governments concerned for their
cooperation prior to, during and after the visit.
3. The Special Rapporteur has agreed to undertake a visit to Kuwait during the last
quarter of 2018 and has requested invitations to visit Cambodia, Chile, Colombia and Saudi
Arabia. She has also received an invitation to visit Algeria and Egypt.
B. Engagement with stakeholders
4. During the year, the Special Rapporteur participated in numerous conferences and
expert meetings, including the fifty-fifth session of the Commission for Social
Development in New York in February, the fifth Pacific Regional Conference on Disability
in Samoa, also in February, and the annual interactive debate on the rights of persons with
disabilities at the Human Rights Council in March. She also co-organized expert
consultations on disability assessment and on sexual and reproductive health and rights of
girls and young women with disabilities jointly with other United Nations experts,
agencies, international civil society organizations, organizations of persons with disabilities
and academia. She actively promoted the establishment of a United Nations system-wide
action plan on disability with the Inter-Agency Support Group for the Convention on the
Rights of Persons with Disabilities.
5. In June, she participated in the tenth session of the Conference of States Parties to
the Convention on the Rights of Persons with Disabilities, and its parallel events. As
mandated by the General Assembly, she continued to engage with the United Nations
Statistical Division, the Inter-Agency and Expert Group on Sustainable Development Goal
Indicators and several United Nations agencies to advocate for the use of the short set of
questions of the Washington Group on Disability Statistics to disaggregate data by
disability in the monitoring of the Sustainable Development Goals.
6. In July, she organized a meeting in Madrid with United Nations human rights
experts to discuss the role of human rights mechanisms (treaty bodies and special
procedures) to protect the rights of persons with disabilities and identify ways to enhance
coherence and coordination in this area. In October, together with the Independent Expert
1 See www.ohchr.org/EN/Issues/Disability/SRDisabilities/Pages/LibertyAndSecurity.aspx.
on the enjoyment of all human rights by older persons, she convened international experts
from the ageing and disability constituencies to discuss the situation of older persons with
disabilities, particularly as it relates to their autonomy and independence.
7. On 24 October, the Special Rapporteur presented her annual report to the General
Assembly on sexual and reproductive health and rights of girls and young women with
disabilities (A/72/133). The report was made available in accessible formats.
8. On 4 December, to mark the International Day of Persons with Disabilities, the
Special Rapporteur together with other United Nations agencies, Member States and
disability advocacy organizations organized several awareness-raising activities under the
campaign to embrace diversity called “A Day for All”. In December, she also took part in
the celebrations of the twentieth anniversary of the Convention on the Prohibition of the
Use, Stockpiling, Production and Transfer of Anti-Personnel Mines and on Their
Destruction held in Vienna.
9. In June, the Special Rapporteur was elected as Chair of the Coordination Committee
of Special Procedures and held many meetings in that capacity. She continued to
collaborate closely with special procedures and treaty bodies, as well as with other United
Nations experts and agencies, including the International Labour Organization, the Office
of the United Nations High Commissioner for Human Rights, the United Nations
Population Fund, the World Health Organization and the United Nations Partnership to
Promote the Rights of Persons with Disabilities.
10. The Special Rapporteur also engaged with several stakeholders, such as national
human rights institutions, representative organizations of persons with disabilities, other
non-governmental organizations, universities and the diplomatic community.
C. Communications
11. Summaries of communications sent and replies received during the period covered
by the present report are available in the communications reports of special procedures
(A/HRC/34/75, A/HRC/35/44 and A/HRC/36/25).
III. The right of persons with disabilities to equal recognition before the law
12. The present report aims to provide guidance to States on how to guarantee the right
of persons with disabilities to equal recognition before the law. Given the importance of the
process of legal harmonization in implementing that right, the report pays particular
attention to the process of law reform on legal capacity.
A. A paradigm shift towards universal legal capacity
13. Equal recognition before the law is central to human rights. Often described as the
“right to have rights”, it articulates the right of every person to be a holder of rights and
obligations under the law, which is a necessary precondition for the exercise of all other
human rights and fundamental freedoms. At the international level, it is recognized in the
Universal Declaration of Human Rights (art. 6), the International Covenant on Civil and
Political Rights (art. 16), the Convention on the Elimination of All Forms of Discrimination
against Women (art. 15), the International Convention on the Protection of the Rights of All
Migrant Workers and Members of their Families (art. 24) and the Convention on the Rights
of Persons with Disabilities (art. 12).2 At the regional level, it is recognized in the American
2 While the Convention on the Rights of the Child does not contain any explicit provision, the
recognition of children as rights holders and respect for their views and interests are intrinsic to its
text.
Convention on Human Rights (art. 3) and the African Charter on Human and Peoples’
Rights (art. 5).
14. Recognition as a person before the law and legal capacity are closely interlinked
concepts. Equal recognition as a person before the law guarantees the right of every human
being to have his or her existence recognized in the legal order, that is, being recognized as
possessing legal personality and coming within the purview and protection of the law.
Legal capacity entails holding rights and duties (legal standing) and exercising those rights
and duties (legal agency).3 The evolving interpretation of the right to equal recognition as a
person before the law implies that legal capacity is a universal attribute inherent to all
persons by virtue of their humanity. Therefore, if a person’s legal agency is denied, his or
her status as a person before the law is also affected.
15. Throughout history, many groups have been denied their legal capacity as both legal
standing and legal agency, including women, minority groups, indigenous persons,
migrants, refugees and asylum seekers. Among them, persons with disabilities face a wide
range of violations to their right to legal capacity in all jurisdictions worldwide. Challenges
are particularly acute for persons with psychosocial disabilities, persons with intellectual
disabilities, autistic persons and persons with dementia. Their legal capacity is usually
restricted on the basis of having a medical condition or impairment (status approach),
having made a decision perceived as poor (outcome approach), or having deficient
decision-making skills (functional approach).4 Once their legal capacity is restricted in one
or more areas of life, they are put under a substitute decision-making regime such as
guardianship or curatorship, where a legal representative is appointed to make decisions on
their behalf, or where decisions will be made by designated medical personnel or by a
court.
16. The denial of and restrictions to the legal capacity of persons with disabilities are
grave and pervade all aspects of life. Persons with disabilities under guardianship, for
example, lose their capacity to exercise all or almost all of their rights and have no control
over decisions related to their lives, from entering into contracts to choosing where and
with whom to live. Restrictions may also apply on a case-by-case basis. For example,
legislation based on a functional approach may limit a person’s rights and freedoms in
specific areas of life such as marriage, voting, parenting or free and informed consent to
health care. Furthermore, in many jurisdictions, those who have not been formally placed
under any form of substituted decision-making may also face restrictions in exercising their
rights, as it is commonly assumed that they have no legal capacity or that they need a third
person to validate their acts. All those practices perpetuate discrimination and exclusion
against persons with disabilities, and pave the way to different forms of abuse, corruption,
exploitation, coercion and institutionalization.
17. Women with disabilities experience aggravated forms of discrimination and specific
violations against their right to legal capacity. Owing to gender stereotypes and gender-
based violence, they are at particularly high risk of being placed under substitute decision-
making regimes. For instance, women with leprosy-related disabilities are often deprived of
rights, such as the right to property. Furthermore, in most countries, women with
disabilities cannot take autonomous decisions with regard to their reproductive and sexual
health and rights, resulting in highly discriminatory and harmful practices (A/72/133).
18. Similarly, older persons with disabilities are at heightened risk of being denied or
restricted in their legal capacity, formally or informally, owing to prejudices and
assumptions based on both age and disability. Many of them are placed in institutions,
confined at home or are not allowed to exercise their legal capacity without the consent of
family members, even if there is no substitute decision-making regime in place. These
3 See Committee on the Rights of Persons with Disabilities, general comment No. 1 (2014) on equal
recognition before the law, paras. 11–12.
4 Amita Dhanda, “Legal capacity in the Disability Rights Convention: stranglehold of the past or
lodestar for the future?”, Syracuse Journal of International Law and Commerce, vol. 34, No. 2
(2007).
practices lead to the loss of control of their lives and expose older persons with disabilities
to high levels of violence, abuse and neglect.
19. For too long, the international human rights system did not pay attention to those
multiple violations of the right to legal capacity of persons with disabilities. In fact, there
has been a significant underuse of the international legal framework to advance this and
other human rights for persons with disabilities (see A/70/297, para. 18).
20. In that context, the Convention on the Rights of Persons with Disabilities introduces
a paradigm shift in relation to the legal capacity of persons with disabilities. The
Convention moves away from medical and paternalistic approaches to disability towards a
human rights-based approach and considers persons with disabilities as rights holders,
rather than as mere receivers of protection, rehabilitation or welfare. In the Convention the
universality, indivisibility, interdependence and interrelatedness of human rights are
recalled by stressing that persons with disabilities should fully enjoy all their rights without
any kind of discrimination. While in the text of the Convention the subsistence of structures
and practices that are contrary to the human rights of persons with disabilities is questioned,
the importance of positive measures to ensure the effective implementation of the
Convention is also stressed.
21. In the Convention a universalist understanding of the right to legal capacity is
upheld and it states that all persons with disabilities enjoy legal capacity on an equal basis
with others. Moreover, the role of support in the actual implementation of the right to legal
capacity is emphasized, underlining the diversity and interdependence of human
experiences. Accordingly, persons with disabilities should have access to appropriate
support to exercise their legal capacity and not be restricted in its enjoyment. The paradigm
of the Convention enshrines the universal recognition of legal capacity and the provision of
the support needed to exercise it. In doing so, it challenges traditional discriminatory
approaches and acknowledges the structural barriers to exercising legal capacity
experienced by persons with disabilities. Furthermore, the Convention has expanded the
understanding of the right to equal recognition before the law in the international human
rights system for persons with disabilities and other groups. 5 On that account, the
obligations arising from other international human rights treaties should be complemented
by the provisions of the Convention and interpreted in the light of it.
22. The paradigm shift of the Convention in relation to legal capacity has already had an
important impact on the work of the United Nations and of regional organizations.
Different United Nations treaty bodies, special procedures and agencies are progressively
adjusting their standards to the Convention.6 In the inter-American human rights system,
the Committee for the Elimination of All Forms of Discrimination against Persons with
Disabilities adopted a general comment calling for the Inter-American Convention for the
Elimination of All Forms of Discrimination against Persons with Disabilities to be
interpreted in line with article 12 of the Convention on the Rights of Persons with
Disabilities.7 The draft protocol to the African Charter on Human and Peoples’ Rights on
the rights of persons with disabilities in Africa, adopted in 2016, also recognizes the right to
legal capacity of all persons with disabilities.
5 For example, in the Inter-American Convention on Protecting the Human Rights of Older Persons the
support paradigm of the Convention on the Rights of Persons with Disabilities in relation to the right
to equal recognition before the law is upheld. The Committee on the Rights of the Child has also
referred to the need to ensure access to supported decision-making arrangements to ensure the right of
children to express their views (see general comment No. 20 (2016) on the implementation of the
rights of the child during adolescence, paras. 22 and 32).
6 See, for example, E/C.12/MDA/CO/2, para. 24, Committee on the Elimination of Discrimination
against Women, general recommendation No. 35 (2017) on gender-based violence against women,
updating general recommendation No. 19, para. 29; CEDAW/C/CZE/CO/6, para. 41;
CEDAW/C/MDA/CO/4-5, para. 38; CEDAW/C/FIN/CO/7, para. 29; CEDAW/C/IND/CO/4-5, para.
37; A/HRC/10/48, paras. 43–47; and A/HRC/34/32, paras. 25–28. See also WHO QualityRights
guidance and training tools, available from www.who.int/mental_health/policy/quality_rights/en/.
7 See OEA/ Ser.L/XXIV.3.1 CEDDIS/doc.12 (I-E/11).
B. The normative content of article 12 of the Convention on the Rights of
Persons with Disabilities
23. Article 12 of the Convention articulates the content of the right to equality before the
law as it applies to persons with disabilities. Article 12 (1) reaffirms the right of persons
with disabilities to be recognized as persons before the law. Article 12 (2) recognizes that
persons with disabilities enjoy legal capacity on an equal basis with others in all areas of
life. Article 12 (3) sets out the State obligation to provide persons with disabilities with
access to support in the exercise of their legal capacity. Article 12 (4) outlines the
safeguards that must be present in a system of support for the exercise of legal capacity.
Finally, article 12 (5) requires States to ensure the rights of persons with disabilities with
respect to financial and economic affairs, on an equal basis with others.
24. There are four primary State obligations arising from article 12. First, States must
recognise universal legal capacity for all persons with disabilities, including for those
requiring more intensive support. That entails adopting legislation that explicitly recognizes
the capacity of persons with disabilities to create, modify or end legal relationships, as well
as providing effective legal protection against any interference with such capacity. That
recognition must include the exercise of the right to property, access to all forms of
financial credit and the right to control one’s own financial affairs, as recognized in article
12 (5) of the Convention. States cannot restrict the legal capacity of persons with
disabilities and must rather protect it against any interference in all aspects of life, including
decisions related to medical treatment, living independently or financial matters.
25. The recognition of universal legal capacity for all persons with disabilities strongly
influences the exercise of all other human rights and fundamental freedoms. Those rights
include access to justice (art. 13 of the Convention), liberty and security of the person (art.
14), freedom from torture or cruel, inhuman or degrading treatment or punishment (art. 15),
freedom from exploitation, violence and abuse (art. 16), integrity (art. 17), nationality and
liberty of movement (art. 18), living independently and being included in the community
(art. 19), freedom of expression and opinion, access to information (art. 21), privacy (art.
22), marriage, family, parenthood and relationships (art. 23), health, including the right to
free and informed consent (art. 25), work and employment (art. 27), adequate standard of
living and social protection (art. 28), and participation in political and public life (art. 29).
States must eliminate, in law and practice, all denials or restrictions of legal capacity of
persons with disabilities in the exercise of these rights.
26. Second, States must abolish and prohibit all regimes of substituted decision-making.
According to the Committee on the Rights of Persons with Disabilities, these regimes can
be defined as systems where legal capacity is removed from a person (even if limited to a
single decision) and a substitute decision maker appointed by a third party takes decisions
based on what he or she considers is in the best interests of the person concerned, even if
that goes against the will of the latter.8 They include plenary and partial guardianship,
judicial interdiction, curatorship, conservatorship and mental health laws that allow
involuntary treatment and commitment. All forms of substitute decision-making are
prohibited under the Convention, including those based on the assessment of mental
capacity skills.9
27. Third, States must develop supported decision-making arrangements of varying
types and intensity, including informal and formal support arrangements. 10 Such
arrangements include, for example, support networks, support agreements, peer and self-
support groups, support for self-advocacy, independent advocacy and advance directives.
Contrary to substitute decision-making regimes, under a supported decision-making
arrangement, legal capacity is never removed or restricted; a supporter cannot be appointed
by a third party against the will of the person concerned; and support must be provided
based on the will and preferences of the individual. The right to legal capacity is not
8 Committee on the Rights of Persons with Disabilities, general comment No. 1, para. 27.
9 Ibid., para. 15.
10 Ibid., para. 17.
contingent on the acceptance of any form of support or accommodation, as persons with
disabilities have the right to refuse them.11
28. All forms of support must incorporate a human rights based-approach that is
respectful of the general principles of the Convention (art. 3). States must take all
appropriate measures to ensure that support programmes respect the inherent dignity,
individual autonomy (including the freedom to make one’s own choices), and independence
of persons; are provided on a voluntary basis; and respect the principles of non-
discrimination and equality. Support arrangements should be designed to enable direct
choice and control by persons with disabilities, so that they can plan and direct their own
support (see A/HRC/34/58, para. 55). Furthermore, States must adopt a community-based
approach to the provision of support. That allows the provision of culturally sensitive
support arrangements in the communities where persons with disabilities live, builds on
existing social networks and community resources, and enables stakeholders (family,
friends, neighbours, peers and others) to play a significant role in supporting persons with
disabilities (see A/HRC/34/58, para. 61).
29. Support arrangements must be available, accessible, adequate and affordable (see
A/HRC/34/58, paras. 48–56). States should ensure the availability of an adequate number
of functioning programmes and services to provide the fullest possible range of support to
the diverse population of persons with disabilities. Support arrangements should also be
accessible to all persons with disabilities, particularly the most disadvantaged ones, without
discrimination of any kind. States must ensure that support is available within the safe
physical and geographical reach of everyone, including those in institutions. Support must
be affordable for all persons with disabilities, and States must ensure that support is
available at nominal or no cost to the maximum extent of their available resources and take
into account gender disparities in income and access to financial resources. States are also
required to provide accessibility measures and reasonable accommodation to ensure that
persons with disabilities can exercise legal capacity. The State obligation to ensure access
to support goes beyond the right to legal capacity, as some persons with disabilities may
need support for decisions that have no legal impact (see A/HRC/34/58, paras. 29–41).
30. Fourth, States must establish safeguards to ensure the respect for the rights, will and
preferences of the individual who is availing themselves of that support. Safeguards on the
provision of support must: (a) be based on the person’s rights, will and preferences; (b)
offer protection against abuse and undue influence; and (c) be proportional and tailored to
the individual. Safeguards should include accountability mechanisms to ensure that the
person’s will and preferences are respected in the provision of support, as well as
mechanisms to challenge the action of a support person if there is a belief that the support
person is not acting in accordance with the will and preferences of the person concerned.
Ensuring that persons with disabilities have access to different forms of support, including
independent advice, also contributes to reducing the risk of undue influence. It is important
to emphasize that safeguards are meant to protect individuals in the provision of support,
not prevent them from making decisions, or from the possibility of taking risks and making
mistakes. Support should never amount to substitute decision-making and the primary
purpose of the safeguards outlined in article 12 of the Convention is to ensure the respect of
the rights, will and preferences of the person concerned.12
31. The Special Rapporteur acknowledges that in certain situations the will of the person
concerned might be difficult to determine. In situations where this cannot be established
even after significant efforts, including through the provision of support and
accommodations, a “best interpretation of the will and preference” standard should be
applied as a last resort.13 That standard implies ascertaining what the person would have
wanted instead of deciding on the basis of her/his best interest. The process should include
consideration of the previously manifested preferences, values, attitudes, narratives and
actions, inclusive of verbal or non-verbal communication, of the person concerned.
11 Ibid., para. 29 (g).
12 Ibid., para. 20.
13 Ibid., para. 21.
32. Similarly, the provision of support to persons experiencing an emotional crisis and
severe distress poses certain difficulties. The default response in most jurisdictions today is
to override the legal capacity of the person concerned and to authorize forced psychiatric
interventions. However, such an approach does not respect the inherent dignity and
autonomy of the individual. The support paradigm offers a rights-based approach to deal
with such cases. For instance, advance plans allow persons with disabilities to give
instructions on how to deal with future emotional crises and/or to appoint a person to
support them in those particular circumstances. In addition, there is growing evidence as to
the effectiveness of non-coercive support practices within and outside the health sector (see
A/HRC/35/21, para. 29). Those practices need to be further researched, developed and
implemented, and must be based on the principles set out above regarding supported
decision-making. In addition, there is an urgent need to address the structural aspects that
make it impossible for persons with disabilities to access support during an emotional crisis
(for example, because of prejudice, low expectations, lack of flexibility, lack of resources
or stringent liability).
33. Article 12 of the Convention was one of the most discussed articles and the one that
demanded the greatest consensus during the negotiations. The issues of universal legal
capacity and substituted decision-making were discussed extensively during the drafting
process. The text adopted reflects the common understanding that all persons with
disabilities should enjoy the right to legal capacity on an equal basis with others, as well as
the right to access support if requested. In fact, proposals to limit the scope of the right to
legal capacity and to incorporate a substituted decision-making paradigm, including the
proposal to include a footnote conditioning the understanding of the term legal capacity in
several languages, were rejected prior to the adoption of the Convention.
IV. Legal capacity law reform
34. Under international human rights law, States have an obligation to respect, protect
and fulfil the right of all persons with disabilities to legal capacity. The obligation to respect
means that States should refrain from interfering with or curtailing, by any means, the
enjoyment of persons with disabilities of the right to legal capacity. The obligation to
protect requires States to prevent third parties, including private actors, from interfering
with persons with disabilities to realize and enjoy the right to legal capacity. The obligation
to fulfil requires States to take positive actions to facilitate the exercise of their legal
capacity, including by facilitating access to support and training.
35. International human rights law also imposes on States an obligation to ensure that
their domestic legislation is consistent with international standards. Article 4 (1) (a) and (b)
of the Convention requires States to adopt all the appropriate legislative measures to
implement the human rights and fundamental freedoms recognized therein and to repeal
any inconsistent legislation that constitutes discrimination against persons with disabilities.
States must therefore review the adequacy of their existing legislation in view of their
obligations under article 12 and other related articles of the Convention.
36. Accordingly, States should identify all legislation to be abolished, amended or
adopted to render their normative framework compliant with article 12 of the Convention.
The legal review should be comprehensive and take into account the interdependence and
indivisibility of all human rights. It should also be all-encompassing and exhaustive, going
beyond the traditional areas of law related to legal capacity (civil, family and mental health
law), to include legislation on political participation, privacy, health, employment, social
protection, immigration, criminal law and access to justice, among other things.
37. Thirteen States parties to the Convention have issued reservations and declarations14
upon ratification or accession, with the intention of limiting the implementation of article
14 The Special Rapporteur considers such declarations as reservations, since they aim to exclude or
modify the legal effect of the provisions of the Convention.
12 and other related articles.15 According to article 19 of the Vienna Convention on the Law
of Treaties and article 46 of the Convention itself, reservations and declarations
incompatible with the object and purpose of the Convention are not permitted. Given the
centrality of article 12 to the enjoyment and exercise of all rights set out in the Convention,
such restrictions clearly contradict the object and purpose of the Convention, as they hinder
and/or deny the full and equal enjoyment of all human rights and fundamental freedoms by
all persons with disabilities. In that regard, the Special Rapporteur urges the States parties
concerned to withdraw all their reservations and declarations.
A. Law reform trends on legal capacity and supported decision-making
38. Since the adoption of the Convention, several States16 have started or completed
legal reforms in relation to the right to legal capacity of persons with disabilities as part of
their obligations under the Convention, or in order to harmonize their legislation prior to
ratification or accession. While most of these laws and bills are not in full compliance with
article 12 of the Convention, they show that a growing number of States acknowledge that
their legal systems, and particularly their substitute decision-making regimes, fail to
guarantee the rights of persons with disabilities.
39. In 2016, Costa Rica adopted Law No. 9379, which abolished all forms of
guardianship and created the legal figure of “guarantor for the equality before the law of
persons with disabilities”, whose role is to ensure the full enjoyment of legal capacity by all
persons with disabilities. The Special Rapporteur welcomes this significant development
and encourages Costa Rica to promptly adopt the necessary regulations to effectively
implement the reform in line with the principles and rights of the Convention.
40. Some countries have adopted provisions declaring universal legal capacity for
persons with disabilities. Those declarations reaffirm that persons with disabilities have the
right to equal recognition before the law and legal capacity, as enshrined in article 12 of the
Convention. While those declarations often contradict other provisions in the same legal
framework, they open the space for further law reforms and court interventions. For
example, in the general law on persons with disabilities of Peru a universal recognition of
legal capacity was introduced and at the same time a parliamentary committee was created
to review the Civil Code in line with the declaration in the general law.
41. Several countries have also introduced recognition of supported decision-making
regimes into their legislation. The scope and formality of those regimes vary from country
to country, but generally they allow individuals to appoint one or more persons to assist
them to: (a) obtain and understand information, (b) evaluate the possible alternatives and
consequences of a decision, (c) express and communicate a decision, and/or (d) implement
a decision. In some jurisdictions, however, the role of supporters includes representation as
a general rule, which renders the support as a de facto mechanism of substitute decision-
making.
42. In a number of countries, persons with disabilities must access the courts in order to
have supported decision-making arrangements recognized. The courts are mandated either
to determine the scope of such arrangements, or to ensure that the proposed scope is
suitable. While in most cases such measures have no impact on a person’s legal capacity,
requiring the intervention of a court creates a series of challenges for persons with
disabilities: (a) in most jurisdictions they encounter barriers in access to justice owing to the
15 Australia, Canada, Egypt, Estonia, France, Georgia, Kuwait, Malaysia, Netherlands, Norway, Poland,
Singapore and Venezuela (Bolivarian Republic of).
16 The Special Rapporteur identified law reform processes, which do not include mental health
legislation, in at least 32 countries: Argentina, Australia (New South Wales, Northern Territory and
Victoria), Austria, Belgium, Bulgaria, Canada (Alberta), Colombia, Costa Rica, Czechia, Denmark,
Germany, Georgia, Hungary, Ireland, Israel, India, Kenya, Latvia, Lithuania, Malta, Marshall Islands,
Netherlands, Peru, Portugal, Republic of Moldova, Romania, Russian Federation, Spain (Catalonia),
Switzerland, United Kingdom of Great Britain and Northern Ireland (Northern Ireland), United States
of America (Texas) and Zambia.
lack of accessibility and procedural accommodations; (b) it is a more costly system, which
makes access to support less affordable; (c) court delays can compromise access to support;
and (d) intense training is required to ensure a paradigm shift in the way judges address the
legal capacity of persons with disabilities.
43. In some countries, persons with disabilities can create supported decision-making
arrangements through private agreements. Such regimes are voluntary and can be
terminated at any time. While those agreements do not require judicial intervention, in
many jurisdictions they are usually subject to very rigorous validity requirements and must
be notarized and/or registered in order to have legal effect and be monitored. As the
procedure can compromise the confidentiality of personal information and could be
wrongly perceived as a condition for exercising legal capacity, it requires appropriate
regulation to ensure adequate safeguards to avoid compromising the full exercise of legal
capacity.
44. Many legal systems also provide for advance directives, which allow individuals to
express their will and preferences beforehand, so they can be followed at a time when they
may not be in a position to communicate them. The scope of the potential advance
decisions is usually specified in each jurisdiction. Advanced health-care directives are
among the most common, but some countries allow advanced directives with a broader
scope, including personal, patrimonial or finance matters (enduring power of attorney). The
person concerned should decide the moment in which an advance directive enters into force
and ceases to have effect.17 However, in most jurisdictions advance directives only enter
into force when the person is declared legally incapacitated. Moreover, in many countries
they are not binding or can be overruled in certain situations.
45. Some countries have implemented regimes of co-decision-making. Under those
regimes, an individual appoints a co-decision maker who will make decisions jointly with
the appointer in order for those decisions to have legal effect. Such arrangements are
usually implemented through private agreements, although some legal frameworks require
court intervention. In most jurisdictions, however, the co-decision maker has the power, in
certain circumstances, to veto a person’s decision, thus restricting the exercise of their legal
capacity. As long as such arrangements are involuntary and the person concerned does not
have the right to terminate or change the relationship at any time, the directives cannot be
considered as a form of supported decision-making.
46. States have also introduced independent advocates to support persons with
disabilities to exercise their legal capacity. In Sweden, for example, independent advocates,
called “personal ombudsmen”, conduct outreach and establish relationships of trust with
persons with psychosocial disabilities, providing them support in different areas of life,
including decision-making. Research has shown that this nationwide scheme provides
significant benefits not only to its clients but also to society in general, by reducing the use
and the costs of specialized services. 18 In some jurisdictions, however, independent
advocates work within the framework of substituted decision-making regimes, assisting
individuals who have been deprived of their legal capacity to express their will and
preferences and/or to communicate with the guardian or curator.
47. All supported decision-making regimes include a broad range of safeguards. Many
jurisdictions require supporters to respect the will and preferences of the individuals, while
regretfully others still refer to the “best interest” standard. Several countries have
incorporated provisions in their laws to prevent abuses and undue influence, such as time
limits, periodic review, requirements for being a supporter, liability, complaint and redress
mechanisms, and monitoring. For example, in Ireland the Assisted Decision-Making
(Capacity) Act 2015, provides that anyone can lodge an administrative complaint against a
decision-making assistant.
48. Many of the efforts towards supported decision-making regimes maintain elements
of substitute decision-making and/or coexist with regimes of substitute decision-making. In
17 See Committee on the Rights of Persons with Disabilities, general comment No. 1, para. 17.
18 See Sverige Socialstyrelsen, “A new profession is born: personligt ombud, PO” (2008), p. 24.
some jurisdictions, courts can impose a supported decision-making arrangement or a co-
decision-making arrangement, or decide who should act as a supporter and what acts she or
he may perform. Many countries have established thresholds to access support, usually
based on an assessment of a person’s mental capacity, where those who cannot reach such
thresholds are “doomed” to substitution decision-making regimes. The use of the “best
interest” standard in some supported decision-making regimes is also worrisome, as it
contradicts respect for the will and preference of individuals. Furthermore, in certain
jurisdictions, accessing certain forms of supported decision-making compromises the legal
capacity of the person and can translate into a loss of rights, including parental and political
rights.
49. Despite such limitations, the growing number of countries adopting supported
decision-making schemes is encouraging and shows that substitute decision-making
regimes are increasingly being challenged. Colombia and Peru, for example, are in the
process of undertaking major legal reforms in this area, which include the recognition of the
capacity to act of all persons with disabilities, the elimination of guardianship regimes, and
the introduction of a set of supported decision-making arrangements. In both countries,
draft bills prepared by multi-stakeholder commissions received the endorsement of
different political parties and civil society. The Special Rapporteur welcomes those
processes and strongly encourages the States to promptly adopt these important reforms.
50. The Special Rapporteur has also identified countries that have undertaken reforms to
ensure more procedural safeguards in the implementation of substitute decision-making
regimes. Changes introduced include the possibility to choose the person who would act as
guardian, the periodic review of guardianship orders and the right to appeal decisions that
remove or restrict one’s legal capacity. Some countries have also limited guardianship to
being a measure of last resort, when no other less restrictive measure can be applied. All
such reforms fall short in respecting the rights of persons with disabilities, as the existence
of substitute decision-making regimes is contrary to article 12 of the Convention.
51. In a similar effort, a number of countries have removed plenary guardianship
entirely from their legal systems, only permitting substitute decision-making in certain
circumstances and for a limited period of time. In the majority of cases, States transition
from plenary guardianship to partial guardianship or curatorship, limiting restrictions to
legal capacity to health and/or financial matters. While the abolition of plenary
guardianship is an important step, maintaining or creating regimes of partial guardianship
and other forms of substitute decision-making are still contrary to the requirements of
article 12 of the Convention.
52. Finally, there are a significant number of countries that have adopted or are
considering adopting mental health legislation. As long as mental health laws allow for the
involuntary deprivation of liberty, forced treatment and forced medication of persons with
disabilities, those laws are contrary to the Convention, including the right of persons with
disabilities to legal capacity. Regardless of their rights-based rhetoric and increased
procedural safeguards, mental health laws confer on medical professionals the capacity to
make decisions on behalf of persons with disabilities, particularly persons with
psychosocial disabilities, thus legitimizing coercive practices. Moreover, in the past two
decades, there has been a worrisome increase of community treatment orders in mental
health legislation, which expands coercive care beyond the confines of mental health
facilities.19 Mental health legislation as it exists today must be repealed, as it creates a
separate legal regime for persons with psychosocial disabilities, contrary to the obligations
of States under the Convention. Regulation of the practice of mental health services should
focus on acceptability and quality, while the rights and freedoms of persons with
psychosocial disabilities must be the same as those of others in all areas of law, including
legal capacity and liberty and security of the person.
19 See Andrew Molodynsky, Jorun Rugkåsa, and Tom Burns, Coercion in Community Mental Health
Care. International Perspectives (Oxford, Oxford University Press, 2016).
B. Learning from supported decision-making in practice
53. Since the adoption of the Convention, there has been an increased interest in
exploring how supported decision-making works in practice; pilot projects have been
carried out in a number of countries across the world.20 Some have been carried out or
funded by States, whereas others have been directly implemented by civil society
organizations, including organizations of persons with disabilities, parent organizations and
research centres. These initiatives cover a rich and diverse range of experiences and
constitute a valuable source of information for legislators and policymakers.
54. The different models of supported decision-making include, among others, formal
and informal networks, support agreements, independent advocates, peer support, advance
directives and personal assistance. Such schemes provide a very broad range of support to
individuals, including access to information, support for communication, empowerment,
building self-confidence, relationship building, personal planning, independent living
assistance and administrative support. Moreover, while in many jurisdictions supported
decision-making involves the appointment of one or more individuals, in practice support is
also provided in group settings or using a mixed structure that incorporates both individual
and group support. Legislation needs to acknowledge this diversity in supported decision-
making regimes. However, there is little recognition of peer support in legislation, despite
its potential to assist persons with disabilities in exercising their legal capacity.
55. Most supported decision-making schemes reviewed for the present report tend to
concentrate on a specific group of persons with disabilities. While some pilot projects have
attempted to include a diverse range of participants, the diversity of the disability
community requires a response to a very broad range of support needs and specific groups
may be in the best position to define those support needs. Furthermore, persons with a high
level of support needs, including those with severe cognitive impairments, non-verbal
communication and/or complex needs, are usually excluded. In that regard, providing
access to a broad range of support arrangements seems better than developing a single
model of supported decision-making. A “one size fits all” approach to supported decision-
making is ineffective and discriminatory. States should take steps to ensure that all persons
with disabilities are provided with the opportunity to access supported decision-making
measures.
56. The nature of the relationship between the individual receiving support and those
providing it varies significantly across practices. Some schemes rely on “trusted persons”
for the provision of support, frequently family members, friends or peers who have a pre-
existing relationship of personal knowledge and trust with the individual concerned.
However, in many supported decision-making mechanisms, the supporters do not have a
previously existing relationship with the individual receiving support, but are individuals
and/or professionals who have been trained to provide support. Some schemes also utilize a
mixed approach, operationalized through support networks that are facilitated by a trained
individual but populated with trusted persons.
57. While having a relationship of trust can be conducive to a better understanding of
the will and preference of the individual and facilitate the relationship between the
individual and supporters, overreliance on persons who have existing relationships can also
be problematic. Many people may not have a social network, may have experienced abuse
and manipulation by relatives, or just do not want to be supported by relatives, friends or
peers. Certain programmes have proved that individuals can build relationships of trust with
volunteers and/or paid workers, especially when appropriate training and guidance is
20 For example, Argentina, Australia, Bulgaria, Canada, Colombia, Czechia, Hungary, India, Ireland,
Israel, Kenya, Latvia, Peru, Sweden, United Kingdom, United Republic of Tanzania and United
States.
available.21 In that regard, legislation should be flexible enough to respond to this diversity
and should not prescribe one form of support over others.
58. While the majority of supported decision-making mechanisms outlined in legislation
include some kind of formality (such as a signed agreement or a court order), there is no
clear consensus among pilot projects and programmes on the benefits of operating under a
formal arrangement. Some projects have identified many positive outcomes from the
inclusion of a written agreement between individuals and their supporters, such as
recognizing the autonomy and self-determination of the individual, tailoring and clarifying
the scope of the support, making the supporter accountable and challenging community
attitudes towards supported decision-making. Procedural safeguards can also be included
into formalized support arrangements. However, some programmes intentionally exclude
signed agreements, due to concerns about undermining the relationship of trust, as well as
the informal nature of support.22 Legal frameworks should therefore be flexible enough to
recognize both informal and formal support arrangements and avoid overregulation.
59. The majority of supported decision-making practices include a component for
training supporters to ensure respect for the will and preferences of individuals and avoid
paternalistic attitudes, low expectations and substitute decision-making. Programmes with
good practices on training typically involve supporters receiving initial comprehensive
training and continuous training, including one-on-one coaching and problem-solving
sessions.23 Topics vary, including basic training on supported decision-making, person-
centred approaches, strategies for supported decision-making and human rights. For
example, peer support groups in Kenya receive training on human rights, including the
rights-based approach to disability. It is important to ensure that clear and effective
resources and training on supported decision-making are available and easily accessible for
anyone providing or receiving support.
60. Community involvement has been demonstrated to contribute significantly to the
success of supported decision-making. Providing support to make decisions is only helpful
as long as others recognize those decisions. Community involvement is necessary to
address structural factors that can hinder or violate the exercise of legal capacity of persons
with disabilities, such as stigma, discrimination and institutionalization. In that regard,
many supported decision-making initiatives have considered training for the authorities and
for service providers, including judges, notaries and medical personnel, among others.
61. Communities also play a role in developing support alternatives, such as support
networks or peer and self-support groups, as well as helping people to access existing
support networks, particularly persons with a high level of support needs and older persons
with disabilities, who may lack other sources of support. Indeed, community-based
approaches for the provision of support constitute an effective strategy to ensure that
responses consider geographical, social, economic and cultural issues (see A/HRC/34/58,
para. 53). According to article 19 of the Convention, legislation must ensure a community-
based approach in the provision of supported decision-making and facilitate the flourishing
of social networks that ensure the individual autonomy and self-determination of persons
with disabilities.
62. Supported decision-making initiatives use a broad range of safeguards, including
adherence to the will and preferences of the individual concerned, express recognition of
his or her right to withdraw from any arrangement, the establishment of time limits and
periodic reviews of arrangements, coaching sessions and dispute-solving and monitoring
mechanisms. In many projects, having multiple supporters was identified as a safeguard,
21 See Brenda Burgen, “Reflections on the Victorian Office of the Public Advocate supported decision-
making pilot project”, Research and Practice in Intellectual and Developmental Disabilities, vol. 3,
No. 2 (2016).
22 See WestWood Spice, “My life, my decision: an independent evaluation of the supported decision
making pilot”, New South Wales Government Department of Community and Family Services
(2015).
23 See Bizchut, “Supported decision-making service for persons with disabilities. Service model”,
schedule C (2017).
since it ensures that different points of view are present, reducing the risk of undue
influence. In relation to monitoring mechanisms, many existing formalized schemes turn to
a third party or independent person, who periodically contacts both the persons receiving
and providing support to enquire about how support is provided. That informal type of
monitoring is promising, as it avoids bureaucratization. When regulating safeguards,
policymakers should strike a delicate balance between ensuring respect for the will and
preferences of individuals and protecting them from abuse and undue influence, and
ensuring that their lives and choices are not overregulated.
V. The way forward
A. Law reform
63. States must take immediate measures to reform their legal frameworks in order to
ensure or restore the right to legal capacity of all persons with disabilities. It is important
that legislation expressly recognize that persons with disabilities have the capacity to both
hold and act upon rights and duties. Legislation must also recognize the right to access
support for the exercise of legal capacity, if desired, and ensure that support arrangements
are available, accessible, adequate and affordable. States must establish an enabling legal
framework that facilitates the creation and implementation of various supported decision-
making schemes, including the provision of financial and technical assistance to civil
society organizations for that purpose. All substitute decision-making regimes must be
repealed.
64. States must ensure an appropriate framework of safeguards to ensure respect for the
rights, will and preferences of individuals in the provision of support and protect them from
conflicts of interest, undue influence and abuses. When discussing crisis or emergency
situations, States must adhere to the principles and rights recognized in the Convention. In
particular, States must refrain from establishing exceptions to the full enjoyment of the
right to legal capacity of persons with disabilities at all times and from creating new
apparently disability-neutral responses that will disproportionately and adversely impact on
persons with disabilities.24
65. States should initiate a comprehensive law review process and make changes in their
legal systems to fully implement the right to legal capacity of persons with disabilities. The
review must be comprehensive and encompass different areas of law, including family,
criminal, mental health and tort and contractual law. The concerns of third parties, such as
those regarding the duty of care, liability and the security of transactions, must be addressed
in the light of the Convention. States must be aware that many experts working in the area
of legal capacity are not familiar with the standards of the Convention and may thus require
prior information and training. The law review process should include persons from
different groups and sectors, including persons with disabilities themselves and those
providing support in practice.
B. Policy development
66. States should consider establishing a comprehensive system to coordinate the
effective access to supported decision-making of persons with disabilities. Such a system
must adopt a human rights-based approach, take into account equality between men and
women and the rights of the most disadvantaged and marginalized groups, and respond to
the diversity of support needs of persons with disabilities, including older persons and those
with a high level of support needs (see A/HRC/34/58, para. 58).
67. States must consider the implementation of pilot projects on supported decision-
making, as part of their obligation to provide persons with disabilities with access to
24 See Tina Minkowitz, “CRPD and transformative equality”, International Journal of Law in Context,
vol. 13, No. 1 (March 2017).
support for exercising their legal capacity. Demonstrations can provide legislators,
policymakers and the wider community with valuable information about the functioning,
cost and value of supported decision-making, thus contributing to a better legal and policy
design.
68. Pilot initiatives should be implemented in collaboration with civil society
organizations, particularly organizations of persons with disabilities who represent the full
range of potential support users, including persons with intellectual disabilities, persons
with psychosocial disabilities, persons with dementia, autistic persons and persons with
brain injuries. That is in order to benefit from the outreach capacity of organizations of
persons with disabilities, their knowledge of the local context and their mobilization and
advocacy capacity (see A/HRC/34/58, para. 64). Supported decision-making experiences
can also benefit from involving a broad range of local stakeholders, including authorities
and service providers. Evaluation should be considered during programme design,
including qualitative data that incorporates the perspectives of participants.
C. Research
69. States should undertake or promote research in relation to legal capacity and
supported decision-making. Research can offer legislators and policymakers valuable
information and possible lines of action to guarantee the right to legal capacity and to
implement supported decision-making. There is a need for more quantitative and qualitative
data on the current use of different forms of substitute decision-making to understand the
extent and impact of that human rights violation, including involuntary commitment to a
mental health facility and forced treatment. Similarly, despite the increasing
implementation of supported decision-making schemes, there is still a clear need for better
quality data to inform subsequent initiatives and policy design. Research on supported
decision-making has predominately concentrated on formalized forms of support, with little
attention paid to other informal forms of support in decision-making, such as natural
support networks or the support provided in the framework of peer support groups. There is
a need to understand how all those forms of support operate and how they relate and
contribute to the exercise of legal capacity of persons with disabilities.
70. Importantly, research on supported decision-making should respond to the rights of
persons with disabilities and include the perspective of the disability community. In line
with article 4 (1) (d) of the Convention, States should refrain from funding or engaging in
any research project that is inconsistent with the right to legal capacity of persons with
disabilities, as enshrined in article 12. Research should, wherever possible, be led by
researchers with disabilities, be participatory and include the views of persons with
disabilities and their organizations in all phases. Outcomes should be published in
accessible formats, including easy-to-read versions.
D. Access to justice
71. While the recognition of the right to legal capacity is fundamental to guaranteeing
access to justice, it is also essential for the protection and restoration of legal capacity.25 As
required by article 13 of the Convention, States must take appropriate measures to ensure
effective access to justice for persons with disabilities on an equal basis with others and
promote appropriate training for those working in the field of administration of justice.
States should also take all appropriate measures to ensure that persons with disabilities have
access to procedural and age-appropriate accommodations, including supported decision-
making, in all legal proceedings before, during and after trial.
72. States must ensure that all persons under substitute decision-making regimes have
access to an effective remedy and consider a moratorium on new applications. They must
also guarantee that all persons with disabilities who have experienced any form of
25 See Committee on the Rights of Persons with Disabilities, general comment No. 1, para. 38.
exploitation, violence or abuse in the context of substituted or supported decision-making
regimes, including arbitrary detention or violations of personal integrity pursuant to mental
health legislation, have access to justice and effective remedies. Those remedies should
include adequate redress and reparations, including restitution, compensation, satisfaction
and guarantees of non-repetition, as appropriate (see A/HRC/34/58, para. 74). National
human rights institutions and independent mechanisms for the promotion, protection and
monitoring of the implementation of the Convention should be mandated to carry out
inquiries and investigations in relation to the enjoyment of the right to legal capacity of
persons with disabilities and provide assistance to persons with disabilities in accessing
legal remedies.
73. Litigation can play an important role in the reform of legislation on legal capacity. It
can have an impact beyond those directly involved in a particular case, leading to new
judicial criteria and changes in the law. In monist countries where treaties are immediately
incorporated into domestic law once they have entered into force, litigation has the added
value of ensuring the direct application of article 12 of the Convention, thus creating a shift
in case law. Indeed, in many countries courts are already applying the standards of the
Convention, challenging existing legislation that denies persons with disabilities the full
recognition of legal capacity.26
E. Participation and collaboration
74. Article 4 (3) of the Convention explicitly requires States to consult closely with and
actively involve persons with disabilities, including children with disabilities, in the
development and implementation of legislation and policies concerning issues relating to
them. States should closely consult with and actively involve persons with disabilities and
their representative organizations in the process of legal harmonization regarding legal
capacity. While the legislative process may vary from country to country, legislatures
should guarantee the participation of persons with disabilities throughout the entire process,
inclusive of deliberative assemblies or chambers that can debate and vote on law proposals.
In many countries, citizens have the right to propose legislative initiatives, referendums and
petitions without the endorsement of political parties or the State authorities. States must
ensure that the procedures of direct democracy are fully accessible for persons with
disabilities.
75. Persons with disabilities and their representative organizations must also participate
in all decision-making processes related to the design, implementation, monitoring and
evaluation of support services and arrangements. The Special Rapporteur’s thematic study
on the right of persons with disabilities to participate in decision-making provides specific
guidance in that regard (A/HRC/31/62).
F. Capacity-building
76. States must complement law reform efforts with training for State authorities, public
officials, service providers, the private sector, persons with disabilities, families and other
key actors. Capacity-building on the Convention is indispensable to ensure the adequate
implementation of the right to legal capacity of persons with disabilities. Training should
also address the intersecting forms of discrimination with regard to legal capacity that
affects persons with disabilities and the forms of prejudice and barriers encountered by
specific groups of persons with disabilities, as well as how to promote and deliver
supported decision-making.
77. States must promote appropriate training for those working as notaries, since they
play an important role, particularly in civil law countries, in concluding and formalizing
legal transactions, such as contracts, wills, and powers of attorney. In doing so, notaries
make assessments of the capacity of individuals entering into legal relationships. It is
26 For example, Argentina, Colombia, Georgia, Kenya, Latvia, Peru and the United States.
therefore important that notaries understand the recognition of universal legal capacity and
the support paradigm brought forward by the Convention, in order to ensure that their work
does not translate into a de facto restriction of legal capacity. They must also receive
appropriate training in the provision of accessibility measures and reasonable
accommodation.
78. The role of academia in promoting the right to legal capacity of persons with
disabilities is critical, particularly in education, research and innovation. Universities should
review their curricula to ensure that the education they offer adequately reflects the
innovations of the Convention in relation to the legal capacity of persons with disabilities.
They can also support the implementation and evaluation of supported decision-making
initiatives. The direct involvement of persons with disabilities with and within academia,
and the development and strengthening of critical studies based on the perspectives of
persons with disabilities, can strengthen the capacity of universities to identify challenges
and propose better solutions.
G. Awareness-raising
79. A cultural change in how persons with disabilities are perceived by their
communities is essential for ensuring that the decisions of persons with disabilities are
respected. States must adopt immediate, effective and appropriate measures to raise
awareness throughout society, including at the family level, regarding the abilities and
rights of persons with disabilities. States should also take measures to combat stereotypes,
negative attitudes and harmful and involuntary practices against persons with disabilities in
all areas of life, and promote the support paradigm in decision-making. Persons with
disabilities must not be seen as objects of care, but rather as rights holders in the same way
as every member of society (see A/71/314, para. 74).
H. Resource mobilization
80. States have an obligation to mobilize resources to their maximum availability to
ensure access to the right to legal capacity, including funding supported decision-making
initiatives, research, training and awareness-raising campaigns. States must also refrain
from funding any act or practice that is inconsistent with the right to legal capacity of
persons with disabilities and ensure that the public authorities, service providers and other
stakeholders act in conformity with it. Retrogressive measures that affect access to support
for persons with disabilities in different areas of life, such as cuts or reductions in subsidies
for community support services, in-home services and personal assistance, can also impact
the exercise of the right to legal capacity.
81. The United Nations, including all its programmes, funds and specialized agencies,
should increase the awareness and expertise of its staff in relation to the right to legal
capacity of persons with disabilities. International cooperation should also consider
increasing funding for the design and development of supported decision-making
initiatives, ensuring that those interventions are consistent with the human rights of persons
with disabilities.
VI. Conclusions and recommendations
82. Throughout history, legal capacity has been denied to many persons with
disabilities, who have therefore been deprived of the exercise of their rights. While the
practice has been widely accepted and viewed as necessary to protect both the
individuals concerned and society, it has proved to be wrong. Denial of legal capacity
takes away people’s control over their everyday lives and significantly reduces their
opportunities to participate in society. Furthermore, it has legitimized and facilitated
the continuation of harmful practices, such as coercion, institutionalization and
sterilization, prompting the ultimate objectification of persons with disabilities.
Against that background, the Convention on the Rights of Persons with Disabilities
reaffirms the universality, indivisibility, interdependence and interrelatedness of all
human rights and fundamental freedoms, and recalls the role of society in ensuring
their full enjoyment. States have an obligation to guarantee the full enjoyment of
human rights for all persons with disabilities. The recognition of full legal capacity
and supported decision-making are necessary steps for making rights a reality,
providing persons with disabilities with the freedom and opportunity to live the lives
they value.
83. States must pay special attention to the right to legal capacity of persons with
disabilities and champion law and policy reforms towards its full implementation. As
the present report illustrates, the standards introduced by the Convention are being
progressively implemented at the international, regional and national levels. The
review of substituted decision-making regimes and the implementation of different
forms of supported decision-making in many jurisdictions reveal a gradual but steady
paradigm shift. There is a broad range of measures that States can implement to
respect and ensure the right to legal capacity of persons with disabilities. However,
States and their leaders need to systematize those lessons and turn them into systemic,
comprehensive and sustainable policy responses.
84. The Special Rapporteur makes the following recommendations to States with
the aim of assisting them in developing and implementing reforms towards the full
implementation of the right of legal capacity:
(a) Recognize, in domestic legislation, the right of persons with disabilities to
legal capacity on an equal basis with others in all aspects of life, and provide them
with access to the support they may require in exercising their legal capacity;
(b) Conduct a comprehensive law review process to abolish or revoke all
laws and regulations that directly or indirectly restrict the legal capacity of persons
with disabilities and/or allow for substituted decision-making;
(c) Adopt an enabling policy framework to ensure the effective access of
persons with disabilities to appropriate supported decision-making arrangements, by
(a) establishing a comprehensive system to coordinate access to supported decision-
making arrangements across the territory, including in rural and remote areas; (b)
promoting the establishment and sustained operation of community-based supported
decision-making alternatives, including the allocation of resources; (c) implementing
or promoting pilot projects and demonstration experiences; and (d) undertaking or
promoting research on supported decision-making;
(d) Introduce safeguards in the provision of support related to the exercise
of legal capacity to guarantee respect for a person’s will and preferences at all times;
(e) Guarantee access to effective remedies to all persons with disabilities
currently under substitute decision-making regimes and take immediate action to
restore their legal capacity, including the adoption of a moratorium on new
applications;
(f) Promote and provide training on the right to legal capacity of persons
with disabilities for State authorities, judges, notaries, service providers, persons with
disabilities, their families and other relevant actors;
(g) Actively involve and consult with persons with disabilities and their
representative organizations in all decision-making processes related to the
implementation of the right to legal capacity of persons with disabilities, including law
reform, policy development and research;
(h) Progressively increase the allocation of funds to ensure access to
supported decision-making and refrain from adopting any retrogressive measures
that directly or indirectly affect the access of persons with disabilities to support;
(i) Encourage international cooperation actors, including non-profit
organizations, to fund and carry out research, provide technical assistance on legal
capacity law reform and supported decision-making, and refrain from implementing
or supporting projects that contravene the Convention on the Rights of Persons with
Disabilities.
85. The Special Rapporteur also recommends that the United Nations system,
including all its programmes, funds and specialized agencies, enhance its capacities
and adequately consider the right to legal capacity of persons with disabilities in all its
work, including when supporting the legislative and policy reforms of States.