CRPD/C/GC/5
segregation from independent life within the community; lack of control over day-to-day
decisions; lack of choice over whom to live with; rigidity of routine irrespective of personal
will and preferences; identical activities in the same place for a group of persons under a
certain authority; a paternalistic approach in service provision; supervision of living
arrangements; and usually also a disproportion in the number of persons with disabilities
living in the same environment. Institutional settings may offer persons with disabilities a
certain degree of choice and control; however, these choices are limited to specific areas of
life and do not change the segregating character of institutions. Policies of
deinstitutionalization therefore require implementation of structural reforms which go
beyond the closure of institutional settings. Large or small group homes are especially
dangerous for children, for whom there is no substitute for the need to grow up with a
family. “Family-like” institutions are still institutions and are no substitute for care by a
family;
(d)
Personal assistance. Personal assistance refers to person-directed/“user”-led
human support available to a person with disability and is a tool for independent living.
Although modes of personal assistance may vary, there are certain elements which
distinguish it from other types of personal assistance, namely:
(i)
Funding for personal assistance must be provided on the basis of
personalized criteria and take into account human rights standards for decent
employment. The funding is to be controlled by and allocated to the person with
disability with the purpose of paying for any assistance required. It is based on an
individual needs assessment and upon the individual life circumstances.
Individualized services must not result in a reduced budget and/or higher personal
payment;
(ii)
The service must be controlled by the person with disability, meaning that he
or she can either contract the service from a variety of providers or act as an
employer. Persons with disabilities have the option to custom design their own
service, i.e., design the service and decide by whom, how, when, where and in what
way the service is delivered and to instruct and direct service providers;
(iii) Personal assistance is a one-to-one relationship. Personal assistants must be
recruited, trained and supervised by the person granted personal assistance. Personal
assistants should not be “shared” without the full and free consent of the person
granted personal assistance. Sharing of personal assistants will potentially limit and
hinder the self-determined and spontaneous participation in the community;
(iv) Self-management of service delivery. Persons with disabilities who require
personal assistance can freely choose their degree of personal control over service
delivery according to their life circumstances and preferences. Even if the
responsibilities of “the employer” are contracted out, the person with disability
always remains at the centre of the decisions concerning the assistance, the one to
whom any inquiries must be directed and whose individual preferences must be
respected. The control of personal assistance can be exercised through supported
decision-making.
17.
Providers of support service often wrongly describe their service using the terms
“independent” or “community living” as well as “personal assistance”, though in practice
such services do not fulfil the requirements posed by article 19. Mandatory “package
solutions” which, among other things, link the availability of one particular service to
another, expect two or more persons to live together or can only be provided within special
living arrangements are not in line with article 19. The concept of personal assistance
wherein the person with disabilities does not have full self-determination and self-control
are to be considered not compliant with article 19. Persons with complex communication
requirements, including those who use informal means of communication (i.e.,
communication via non-representational means, including facial expression, body position
and vocalization) must be provided with appropriate supports enabling them to develop and
convey their directions, decisions, choices and/or preferences and have them acknowledged
and respected.
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