Promoting the Rights of Children with Disabilities, UNICEF

cases of physicians in both income-rich and incomepoorcountries who have chosen to deny childrenwith disabilities access to essential operations. 37 Inextreme cases, doctors, sometimes backed by thecourts, have refused to intervene to save the life of achild with a disability, even when the child’s parentshave sought such intervention. 38 Studies have alsosuggested that physicians may withhold medicaland rehabilitative services from people with severeimpairments because of assumptions that they aretoo severely disabled to benefit. In other respects,health care providers may lack awareness ofunderlying causes that have a persistent influence onthe health and well-being of persons with disabilities.Yet in other instances, children with disabilitieshave been subjected to clinical and pharmacologicalinterventions that would be considered unacceptableif carried out on children without disabilities inthe same community, with examples includingelectroshock therapy, excessive medication androutine hysterectomies. 39 The result in all suchinstances is that children with disabilities are deprivedof individualized or appropriate care.The basic and continuing education and training ofdoctors and other health professionals should alwaysinclude up-to-date information on childhood disability.This recommendation is reinforced by the CRPD. Anumber of resources are available to provide basicknowledge and skill development concerning personswith disabilities for health care workers. 40Persons with disabilities and family members haveoften played a key role in sharing their experienceand have made valued contributions to the trainingof health care professionals. Opportunities shouldalso be available for paediatricians and other healthprofessionals to meet children with disabilitiesin community settings, such as play centres andschools, as well as adults with disabilities in collegesand workplaces, rather than in hospital clinics.Parents across the world have expressed concernthat physicians tend to underestimate the potential ofchildren with disabilities to benefit from education andtraining or to make a positive contribution to society. 41Ill-defined policies, objectives and an ambiguousposition on the part of national governments oftenexclude or fail to ensure the provision of welfareservices for children with disabilities, across differentregions of the world. Different definitions of disabilityand poor coordination between departments ofhealth, social services and education are reportedin many developed countries and have seriousimplications for the extent to which children withdisabilities enjoy their rights to support and otherservices. This also makes it difficult for parents andchildren to determine the benefits to which they areentitled, creating wide variations in the availabilityand quality of support and services for children andtheir families. 42Legislative barriers can be exacerbated by administrativedivisions that indirectly perpetuate marginalizationand discriminatory attitudes. Services for childrenwith disabilities are often organized differently thanthose for children without disabilities, leading to inefficiencyand confusion for families. In many countries,different phases of education have different funding,administration and legislative systems, thus creatingbureaucratic barriers. In sectors such as education,health and social work, services for adults may beorganized differently than those for children. As aresult, after reaching a certain age, young people maylose welfare support to which they were entitled ormay have to renegotiate this support. 43Access to educationThe child’s right to education is enshrined in humanrights treaties, including articles 28 and 29 of theCRC. A critical implication is the requirement forprimary education to be compulsory and availablefree to all; and secondary education to be availableand accessible to every child, with the provision offinancial assistance when needed. The CRPD buildsupon this principle and makes recommendationsabout access to lifelong learning opportunities. Inmany parts of the world, however, the majority ofchildren with disabilities and especially those withmoderate, severe and profound impairments, are stillfar from enjoying access to any kind of school, letalone to regular education.In many Western countries and throughout Easternand Central Europe, special schools have played animportant part in providing education for children withdisabilities. Some of these have been residential,especially in large countries with scatteredpopulations, but many day special schools have beenestablished with pupils living with their families.In recent decades, however, the role of special schoolshas come under critical scrutiny, the lead being takenby Italy when it closed most of its special schools inthe 1970s, relocating the pupils to local schools andproviding individualized support through the recruitmentof support staff (see box 6.6 on page 29).Experience in many countries has shown thatmany children who would previously have beenautomatically referred to special schools can besatisfactorily educated in mainstream schools, givensupport tailored to their individual needs, oftenthrough an individual educational programme. Thisincludes children with intellectual disabilities suchas Down’s syndrome, a number of whom haveconfounded expectations by completing secondaryeducation and successfully passing the nationalschool-leaving examinations. 44Successful inclusive education experiences in numerouscountries are also linked to the expansion of earlyintervention programmes – guaranteeing an earlyInnocenti Digest No. 13Promoting the Rights of Children with Disabilities16