Perspective: Children with disabilities and universal human rights

By Lenín Voltaire Moreno Garcés

There can be no such thing as the universal exercise of human rights unless these rights are enjoyed by all people – including the most vulnerable. Spurred by this conviction, the Office of the Vice-President of the Republic of Ecuador has focused on ascertaining and improving the situation of people with disabilities – starting with children.

Beginning in July 2009, we conducted surveys throughout Ecuador under a project known as the Manuela Espejo Solidarity Mission. By visiting 1,286,331 households in the country’s 24 provinces and 221 cantons, we were able to identify 293,743 persons with disabilities. Of this total, some 24 per cent had intellectual disabilities and the remaining 76 per cent had physical or sensory disabilities. We estimated the prevalence of major disabilities at over 2 per cent of the national population, as measured by the 2010 census.

We found that about 55,000 boys and girls under 18 years of age had disabilities, accounting for about 19 per cent of all persons with disabilities in Ecuador. As of June 2012, these children had received 87,629 technical assistance donations consisting of such items as wheelchairs, walkers, anti-bedsore mattresses, walking sticks, hearing aids and visual kits, depending on the need or needs identified. Three new prosthetics shops were established and expected to deliver 1,960 prosthetic and orthopaedic devices to the country’s children in 2012 alone.

We also found that many families live in extremely difficult circumstances. The care of children with severe disabilities can be particularly expensive, forcing mothers to abandon them in order to earn money. So the Joaquín Gallegos Lara Subsidy was established and provides the equivalent of US$240 per month in financial assistance to the primary caregiver of a child or adult with a disability. Training in first-aid services, hygiene and rehabilitation is also provided. Ecuador is thus recognizing, for the first time, the labour of love performed by families who care for persons with disabilities. As of June 2012, the subsidies had benefited 6,585 children, 43 per cent of them girls.

In addition to support, our approach attaches importance to early detection and intervention. By 2012, some 1.1 million children under age 9 had been screened to detect hearing impairments and promote early intervention. To this end, 1,401 diagnostic and aural screening service units were set up in the Ministry of Public Health network; 1,500 health professionals were trained; 30 speech therapy service units were established; and 1,508 hearing aids were provided.

In 2013, 714,000 children will have been screened at 24 impaired-sight service centres, and we expect that some 2,500 children will receive aids to help them improve their vision or function with blindness.

We have also set up a national programme to screen newborns for congenital conditions that can be treated. By December 2011, this effort, known as ‘Right Foot Forward: The Footprint of the Future’, had screened 98,034 newborns and found 30 cases of congenital hypothyroidism, galactosaemia, congenital adrenal hyperplasia or phenylketonuria. Each of these 30 girls and boys has received treatment for conditions that, if left untreated in the first few weeks or months of life, place children at increased risk of low cognition, speech impairment and tremors, among other impairments.

Beyond bio-social support and early intervention, we are pursuing social and cultural inclusion. Under the banner of ‘An Ecuador of Joy and Solidarity’, 70,000 children and young people with and without disabilities have participated in inclusive fairs held throughout the country. Play and games are being promoted as means of creating space for integration. At these fairs, persons with disabilities take the lead as instructors in physical exercise, arts and crafts, games and storytelling.

Some 7,700 marginalized or vulnerable children and young people are advancing their personal development, self-esteem and social integration through such pursuits as dance, music, painting and literature. They include 1,100 children and young people who are involved in the Social Circus, an initiative run in collaboration with the Canadian entertainment company Cirque du Soleil.

These innovations have awakened interest among Ecuador’s neighbours, a number of whom are seeking to learn more about our experience. The first thing to note is that there is no time to lose. No child should have to wait for the services and supports that are rightfully hers or his, but this is especially the case for children with disabilities, because their vulnerability can increase with age.

We in government must tackle the tasks at hand without delay. We must understand that disability is not a problem but rather a circumstance. It is up to us, regardless of the place or the role we have to play, to assist our youngest citizens in entering the mainstream. We cannot even dream of a country with social justice, one that abides by the principles of good living, unless we guarantee that persons with disabilities, especially children and adolescents, can fully exercise their rights.

Disability does not mean incapability: It is the wonderful diversity that enriches humankind.

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