A/HRC/34/58
family rather than directly to the persons with disabilities, and the feminization of support. 19
It is important to note that allowances that are paid directly to “informal carers” of adults
with disabilities can compromise the capacity of persons with disabilities to exercise choice
and control over their support. Support to families should never replace support to
individuals.
3.
Participation and collaboration
63.
Persons with disabilities and their representative organizations must participate in all
decision-making processes related to the design, implementation, monitoring and
evaluation of support services and arrangements. Persons with disabilities know best what
type of support they require and the barriers they face in accessing it. The Convention on
the Rights of Persons with Disabilities 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 (art. 4 (3)). The Special Rapporteur’s thematic study on the right of persons with
disabilities to participate in decision-making (A/HRC/31/62) provides specific guidance in
this regard.
64.
States should promote collaboration and partnerships between public authorities and
civil society organizations, including representative organizations of persons with
disabilities, in the area of provision of support, particularly at the subnational and
operational levels. In this way, support systems can benefit from the outreach capacity of
organizations of persons with disabilities, their knowledge of local contexts and their
mobilization and advocacy capacity. For instance, in Kenya the Government funds
organizations of persons with psychosocial disabilities to run peer support groups in seven
counties that facilitate support for decision-making and community living.
4.
Non-discrimination
65.
States must ensure that all persons with disabilities enjoy equal access to quality
support without discrimination. Public and private service providers and agencies cannot
deny access to support on the basis of disability, whether directly or indirectly, and they
must ensure the provision of reasonable accommodation to all those who may require it.
States should review all eligibility criteria and assessments from a human rights perspective
to ensure they are not discriminatory, in line with the recommendations included in the
Special Rapporteur’s thematic study on the right of persons with disabilities to social
protection (A/70/297).
66.
States must abolish discriminatory practices in the provision of support. For
instance, many States continue to rely on institutional and residential care and provide
support services predominantly in those settings. Furthermore, the existence of
guardianship and other substitute decision-making regimes present great challenges for
persons with disabilities in accessing support services. These practices not only deprive
them of the possibility to choose their supports, but also contribute to perpetuating their
isolation, forced treatment and institutionalization. States should not bundle access to
support with such requirements as accepting certain residential arrangements or undergoing
medical treatment. Stigma and discrimination also have a negative impact on access to
support services by persons with disabilities. Misconceptions about them often result in
19
16
Evidence also shows that, if well designed, personalization schemes can increase the protection of
those who provide support, both in the formal and informal sector. See Kirstein Rummery, “A
comparative analysis of personalisation: balancing an ethic of care with user empowerment”, Ethics
and Social Welfare, vol. 5, No. 2 (2011), pp. 138-152.
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