A/HRC/44/46/Add.1
53.
Older persons affected by Hansen’s disease and related disabilities should never be
denied the right to legal capacity on the grounds of their age or mental health. Instead, older
persons should always have the right to receive support in decision-making in any
circumstance they may need it. Support in decision-making can take different forms, such
as having someone who is fully trusted by the concerned individual to assist her or him
with a decision, having information provided in an accessible way or being able to say in
advance the type of care or medical treatment the individual would like to receive in the
future. Older persons affected by Hansen’s disease and related disabilities have the right to
personal autonomy in making decisions, in determining their life plans and in leading
autonomous and independent lives in line with their will and preferences and on an equal
basis with others.
54.
These rights to autonomy, independence and legal capacity in older age are
enshrined in the Convention on the Rights of Persons with Disabilities, article 19 of which
provides for the right to independent living for persons with disabilities, and applies to
older persons with disabilities. For the enjoyment of this right, support services may be
required in areas such as mobility, assistive technologies, communication, daily activities,
participating in leisure activities and in other social, religious, cultural, political or
educational activities and personal relationships on an equal basis with others, and decisionmaking, including the possibility to make decisions in advance on budgeting and financial
planning, on making wills, on health care and on end of life care.
55.
By the same token, palliative care, understood as an approach that improves the
quality of life of patients and their families who are facing problems associated with a lifethreatening illness, has been recognized by several treaty bodies. Both the Committee on
Economic, Social and Cultural Rights in its general comment No. 14 (2000) on the right to
the highest attainable standard of health, and the Committee on the Elimination of
Discrimination against Women in its general recommendation No. 27 (2010) on older
women and the protection of their human rights, have asserted that States must ensure
access to palliative care as part of the right to health. Furthermore, the Independent Expert
on the enjoyment of all human rights by older persons has affirmed the need for States to
ensure the availability and accessibility of palliative care in public and private settings
(A/HRC/30/43, para. 131). Older persons affected by Hansen’s disease should have the
right and opportunity to make free and informed decisions on their palliative care.
56.
All the aforementioned measures to ensure a good standard of living for older
persons affected by Hansen’s disease should be guaranteed both in and outside the
sanatoriums. To that end, support services should be available on an equal basis in home,
community and residential settings, and counselling should also be provided on a routine
basis for older persons affected by Hansen’s disease. Moreover, steps should be taken to
ensure the effective access of older persons affected by Hansen’s disease to a wide range of
community-based support services and arrangements, including counselling and personal
assistance; support for decision-making; assisted living arrangements; mobility aids;
assistive devices and technologies; palliative care; and community services.
57.
Given the ageing of this population, but more fundamentally the effects that the
systemic violation of their rights has had both on persons affected by Hansen’s disease and
their family members, the Special Rapporteur urges the Government to recognize the
internalization of stigmatization as a form of discrimination. While the Special Rapporteur
acknowledges the effort the Ministry of Justice has made to develop a mechanism for
receiving complaints of discriminatory practices and to provide suitable follow-up, as a
good practice, the full scope of discrimination may not have been embraced when this key
instrument was conceptualized. Many persons affected by Hansen’s disease and their
family members will be more in need of redress for the psychosocial effects of
discrimination than with regard to ordinary discriminatory events and practices. The
Special Rapporteur therefore recommends that the scope of the mechanism be extended to
include psychosocial counselling, support, especially peer support, as a means to redress the
internalization of stigmatization and to support people to be open about their personal
history and to reunite with their families and communities.
(2004) on temporary special measures.
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