Disability – A parent’s perspective

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[1] 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)[2] 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”[3] is situated within the Social Security Ministry and is being implemented with some success.  The 2011 Population Census[4] 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.

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  • […] Para leer el texto en inglés, visita el blog Caribbean DevTrends. […]

  • avatar image
    Sonia Copeland
    June 28, 2014 Reply

    Hi, In a policy dialogue at MIND with multiple sectors yesterday, a civil servant raised this very issue enquiring what is being done to support families who have children requiring special programs and interventions. Then after a less than adequate response from the panelists she stood again and declared "My interest in this is personal, I am a grandmother with 2 grandchildren who need this service". Thanks for your article as it is now time to widen the conversation to look at an "All of Government, All of Society" approach and action. I hope you will be willing to share your experience and reflections with our policy makers. Bless you and keep strong Sonia Copeland

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    Victor L.rown
    June 28, 2014 Reply

    Having been associated with Special Olympics Jamaica for the past 18 years, I agree 100% with the comments made. Not enough is being done to provide PWDs with equal 0pportunities to develop their true potential. During my stay at the National Works Agency I was able to secure jobs for four athletes on the road crews. They all were able to perform the tasks given them very well and one has gone on to become a heavy machine operator and another has his certificate as a welder. All of this shows that with the right opportunity PWDs can learn and contribute not only to their own wellbeing but to the increased economic standard of the country. More needs to be done to provide whatever "customized" training is required for PWDs to include all of what has been mentioned in the article. I also work closely with some athletes that have the same issues as the young lad mentioned and find that through the sporting approach they have developed confidence and skills that can help them in the regular world if only given a chance. Not enough is being done in this regard, to identify specific work streams that PWDS can do. other countries make such an effort why can't we (government and private sector)? Count me in on any effort you have in mind. Regards

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    A. Pennant
    June 28, 2014 Reply

    Quite an enlightening article. Grateful that your Son is so loved and has an excellent support structure in place. Hopefully your article will be the commencement of a greater awareness so that the funding can be put in place for PWDs to have a better quality of life here in Jamaica and across the region. Thank you for Sharing.

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    Marie Wint-McKenzie
    June 30, 2014 Reply

    Charm, my support always for you and the many other persons I know that have similar struggles. Changing policy is the first step along with awareness. Love the lifelike illustration Jonathan has done.

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    July 1, 2014 Reply

    Very inspiring article the story of a committed mother continue on your journey to improve the life of your son and I hope as a country we take seriously this initiative to improve the lives our PWDs

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    July 1, 2014 Reply

    Very interesting article. I am so happy to learn of Jonathan's progress and I am confident that with the help of God and the support of his family, he will overcome. His creativity in the lifelike illustration (as described by Marie) is evidence of hope. May your dream of bringing the brain-based therapy program to Jamaica become a reality. I do hope that the powers that be will be inspired to take a more serious approach towards improving the lives of PWDs (children in particular).

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