European governments promise equal health rights for children with special needsBMJ 2010; 341 doi: https://doi.org/10.1136/bmj.c6806 (Published 26 November 2010) Cite this as: BMJ 2010;341:c6806
More than 50 countries in Europe have signed a declaration committing their governments to provide high quality healthcare for children and young people with learning disabilities and to end neglect, abuse, and discrimination.
The 53 countries from the World Health Organization Europe’s region are also committed to transferring care of children and young people with learning disabilities from institutions to the community. Families should be given support to allow parents to care for their children at home, says the declaration, which was signed at a WHO Europe conference on improving the lives of children and young people with intellectual disabilities and their families in Bucharest on 26 and 27 November. The conference believes that health underpins wellbeing and the capacity to enjoy life.
A review by the Unicef Innocenti Research Centre of how children are treated found that about 500 000 children with disabilities were living in institutions in 1990 in the eastern part of the WHO European region. At least 317 000 children in this subregion still live in segregated residential institutions, it says. And this number is expected to rise by about 1% per year over the next 10 years unless urgent action is taken.
Many of the institutions have been described as “little more than warehouses, often operating on less than $1 [£0.63; €0.73] per inmate per day, providing no rehabilitation and no means of ever transitioning out,” says the report.
Children spend most of the day in bed, which often causes atrophy of the limbs, contractures, spine deformities, and breathing disorders. Self inflicted injuries are also common.
With a limited number of staff, children are given little care beyond being fed and clothed. The report says, “The lack of human contact is especially detrimental for babies and small children. Overuse of medication and abuse of restraints, including the use of cage beds, is not rare.”
Poor hygiene has led to a high prevalence of hepatitis B and D, diarrhoeal diseases, and other infections. A study by the Innocenti Research Centre found more than 15 000 cases of disease registered in institutions in Bulgaria in 2001 alone, an average of five cases per child.
Children in institutions are also more likely to have epilepsy, cerebral palsy, sensory impairment, mental health problems, and behavioural problems.
Many health problems, such as hydrocephalus, congenital heart disorders, and cleft palates, are left untreated because there is no transport to take children to hospital or they are refused admittance because hospitals worry that nobody will collect the children when they are discharged.
The report says that different models of healthcare will work in different countries in the WHO region. It adds, however, that there is a consensus that the team providing the healthcare to children with intellectual disabilities should be multidisciplinary, with a “high level of planning, collaboration and cooperation between social services, child health, education, voluntary agencies and mental health services for children and adolescents for both community and inpatient services.”
Zsuzsanna Jakab, WHO’s regional director for Europe, said, “Children with intellectual disabilities have the same rights to health and social care, education, and protection as other young people. They should have equal opportunities to live stimulating and fulfilling lives in the community with their families, alongside their peers.
“The declaration that our member states have adopted today in Bucharest recognises that these children have greater health needs, yet they encounter major barriers in gaining access to effective health promotion and care. If they gain access to services, their needs are often either missed or neglected. The declaration maps out concrete actions that will empower these children to achieve their full potential in life.”
Cite this as: BMJ 2010;341:c6806
The declaration and a background paper, Better Health, Better Lives: Children and Young People with Intellectual Disabilities and their Families, can be seen at www.euro.who.int/en/what-we-do/health-topics/diseases-and-conditions/mental-health/activities/intellectual-disabilities.
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