Disability – A parent’s perspective

December 12th, 2014

by Charmaine Edmondson-Nelson

Illustration by Jonathan K. Nelson

My last child, the baby of the family, turns 15 this year. In many ways he is the baby of family, as he still gets hugs and kisses and his actions still elicit oohs and aahs. You see, my son has a neurodevelopmental disorder, so although 14 years old, he is at the intellectual level of a 4 year old. Every new word he learns, every concept grasped and any increased awareness of the world around him is a moment of joy for the family.

The biggest joy is that there is always some progress, which gives us hope and drives us to continue trying new approaches. Over his 14 years he has attended six schools, each contributing to some aspect of his development.  He has benefited from speech therapy, occupational therapy, listening therapy, ABA, brain-balance therapy and nutrient supplementation.  At various stages in his development, he has been assessed by different professionals – Developmental Pediatrician, Speech Pathologist, Neurologists, Audiologist, Clinical and Educational Psychologists. He is currently in a therapeutic programme, based on the science of neuroplasticity and we are seeing positive results.

But what of the parent who does not have the resources and the networks to access these kinds on interventions?

Article 23 of the Convention on the Rights of the Child commits States to ensure that assistance extended to a disabled child is designed to provide effective access to education and training to allow the child to achieve the greatest possible social integration and development. Article 24 of the UN Convention on the Rights of Persons with Disabilities (PWDs) contains similar provisions.

The discourse on access for PWDs, however, has often focused on physical access. For a child with an intellectual disability, such as my son, access means specialized schools, specialized curricula, specially trained teachers and highly specialized equipment and technologies. This calls for significant investments, which in the absence of State resources, falls on the parents to identify.

In keeping with its commitment under the UN Convention on the Rights of PWDs, the Government of Jamaica approached the Inter-American Development Bank (IDB) for support to improve targeting of PWDs for social assistance, in advancement of ongoing social safety net reforms.  The resulting Technical Cooperation (TC) “Support for Improving the Lives of the Disabled” is situated within the Social Security Ministry and is being implemented with some success.  The 2011 Population Census indicates that approximately 470,000 persons experience some level of disability; however information specific to persons with intellectual disabilities is not currently available. One of the components of the IDB TC however, is the strengthening of the Jamaica Council for Persons with Disabilities (JCPD) to identify, classify and register PWDs.

It has been acknowledged by policymakers that lack of access to quality education, training and income earning opportunities, has fueled the numbers of PWDs falling below the poverty line. Despite this, interventions targeted at PWDs continue to take a welfare-based approach. It may be timely for the model to be inverted, with an approach based on empowerment underpinning future program design.

My son currently attends a public school for children with intellectual disabilities. I would love to see some of the interventions I have been exposed to being mainstreamed in this school, so that every child could benefit regardless of their social status. I dream of bringing the brain-based therapy program he is currently participating in to Jamaica. If this were to happen families would not have to travel to Florida, but could remain at home, access the programme at a more affordable cost, and potentially experience the breakthroughs in communication, cognition and behavior that I have witnessed. Major funding is required for such ideas to become reality.

Given effective access, appropriate to their type of disability, PWDs will have a greater chance at living at their fullest potential, resulting in fewer persons requiring State social assistance. Although the approach will not cost Government less in the medium term, the positive impact on families, like mine, would be significant.

Tags: Caribbean, Convention on the Rights of the Child, disability, health, Jamaica, Jamaica Council for Persons with Disabilities, neurodevelopmental, neuroplasticity, parent, PWDs, Support for Improving the Lives of the Disabled