A/HRC/34/58
4.
Choice and control
55.
States must design support services and arrangements so that they enable direct
choice and control by persons with disabilities. Existing services often do not comply with
this standard. In many instances the decisions of users can be overridden by professionals
and family members. States must guarantee to persons with disabilities the opportunity to
plan and direct their own support: who provides it and how, and whether it is provided in
disability-specific services or in services offered to the general public. The denial or
restriction of legal capacity, a widespread human rights violation worldwide, has a direct
impact on the possibility for persons with disabilities to exercise choice and control over
the support they receive and contributes to the imposition of services that are contrary to
their dignity and rights.
56.
Individual funding is a suitable way to ensure choice and control by persons with
disabilities. Personalized schemes allow persons with disabilities to hire support directly,
either from formal service providers or informal carers, or a combination of both. In this
way, persons with disabilities can decide who provides them support and the type and level
of support they wish to receive, and thus are much more empowered to ensure that they will
receive adequate support. The implementation of such schemes should not, however, result
in States relinquishing their primary responsibility to ensure access to appropriate support
for persons with disabilities. On the contrary, States have a significant role to play in its
management and monitoring.
V. Ensuring access to support for persons with disabilities
A.
General State obligations
1.
Legal and policy frameworks
57.
States must establish legal and policy frameworks that ensure that support services
and arrangements, including assistive technologies, are available, accessible, adequate and
affordable. Many national legal frameworks do not include support services at all, or only
for the exercise of certain rights (e.g., inclusive education or mobility). Moreover, when
legislation does consider these services, States often do not have the appropriate policies
and programmes in place to ensure implementation. States should review existing
legislation and policies on support to ensure that they are compatible with the requirements
of the Convention on the Rights of Persons with Disabilities.
58.
States should also consider establishing a comprehensive system to coordinate the
effective access to support of persons with disabilities. The system should be anchored in
the human rights-based approach to disability; take into account equality between men and
women and the rights of the most disadvantaged and marginalized groups; and cover all
support needs across all sectors of society throughout one or more schemes, formal and
informal. Such a system could bring coherence and coordination across programmes, actors
and levels of government responsible for the provision of support. Within this system,
States should take all appropriate legislative, administrative, social, educational and other
measures to protect persons with disabilities from all forms of exploitation, violence and
abuse, including their gender-based aspects. States should also consider integrating as many
assistance and support services as possible into their existing mainstream policies and
programmes. Persons with disabilities and their representative organizations should
participate in all decision-making processes concerning this system, including design,
implementation and monitoring.
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