16
Innocenti Digest No. 13
Promoting the Rights of Children with Disabilities
cases of physicians in both income-rich and income-
poor countries who have
chosen to deny children
with disabilities access to essential operations.
37
In
extreme cases, doctors, sometimes backed by the
courts, have refused to intervene to save the life of a
child with a disability, even when the child’s parents
have sought such intervention.
38
Studies have also
suggested that physicians may withhold medical
and rehabilitative services from people with severe
impairments because of assumptions that they are
too severely disabled to benefit. In other respects,
health care providers may lack awareness of
underlying causes that have
a persistent influence on
the health and well-being of persons with disabilities.
Yet in other instances, children with disabilities
have been subjected to clinical and pharmacological
interventions that would be considered unacceptable
if carried out on children without disabilities in
the same community, with examples including
electroshock therapy, excessive medication and
routine hysterectomies.
39
The result in all such
instances is that children with disabilities are deprived
of individualized or appropriate care.
The basic and continuing education and training of
doctors and other health
professionals should always
include up-to-date information on childhood disability.
This recommendation is reinforced by the CRPD. A
number of resources are available to provide basic
knowledge and skill development concerning persons
with disabilities for health care workers.
40
Persons with disabilities and family members have
often played a key role in sharing their experience
and have made valued contributions to the training
of health care professionals. Opportunities should
also be available for paediatricians and other health
professionals to meet children with disabilities
in community settings, such as play centres and
schools, as well as adults with disabilities in colleges
and workplaces, rather than in hospital clinics.
Parents across the world have expressed concern
that physicians tend to underestimate the potential of
children with disabilities to benefit from education and
training or to make a positive contribution to society.
41
Ill-defined policies, objectives and an ambiguous
position on the part of national governments often
exclude or fail to ensure the provision of welfare
services for children with disabilities, across different
regions of the world. Different
definitions of disability
and poor coordination between departments of
health, social services and education are reported
in many developed countries and have serious
implications for the extent to which children with
disabilities enjoy their rights to support and other
services. This also makes it difficult for parents and
children to determine the benefits to which they are
entitled, creating wide variations in the availability
and quality of support and services for children and
their families.
42
Legislative barriers can be exacerbated by administra-
tive divisions that indirectly perpetuate marginaliza-
tion and discriminatory attitudes.
Services for children
with disabilities are often organized differently than
those for children without disabilities, leading to inef-
ficiency and confusion for families. In many countries,
different phases of education have different funding,
administration and legislative systems, thus creating
bureaucratic barriers. In sectors such as education,
health and social work, services for adults may be
organized differently than those for children. As a
result, after reaching a certain age,
young people may
lose welfare support to which they were entitled or
may have to renegotiate this support.
43
Do'stlaringiz bilan baham: