Jaevion Nelson | Urgent action for children with disabilities

Children with disabilities and their parents are bombarded with a great deal of negligence and injustice in their daily lives that they are often left to face on their own. The costs for caring for a child with disability is exorbitant. There aren’t many public schools that can cater to their needs (at all levels) and health facilities often lack the capacity to cater to them adequately, among other things. Sadly, despite some progress, there is seemingly no end in sight.

Caring for a child with disability (CWD), in this country, takes a toll on families, parents/guardians especially, because there is little to no support available for them. An informative, but frightening report, Study on Socio-Economic Impact of Disability on Children and Access to Safety Nets in Jamaica highlights some of the issues. Some of the findings are:

· There is generally a lack of awareness among parents and guardians about the services that are available (however few there might be) to support them with caring for a child with disability.

· Sixty-nine per cent of respondents report that it was either difficult or very difficult to access services from the government.

· The most common types of services parents/guardians accessed were testing and screening (78 per cent) and therapy (71 per cent), which are mostly provided free of charge through the Early Stimulation Programme and public hospitals/clinics.

· Parents/guardians typically spend between $30,000 and $49,999 monthly to care for the CWD (33 per cent) and receive financial support for the child from their partner (61 per cent) and earnings from a job (59 per cent). Only 29 per cent received funds from PATH and seven per cent from the Jamaica Council for Persons with Disabilities (JCPD).

· Most parents/guardians (64 per cent) say half or nearly all of their household income goes towards caring for the CWD.

Based on anecdotal reference and this report, one need not wonder how we fare where the sector plan for people with disability for Vision 2030. With eight years to go, we need to seriously consider what we have done, are doing, and how much more we need to do to create “A society that is inclusive, accessible, provides opportunities for all and recognizes the rights, freedoms and responsibilities of persons with disabilities in the process of nation building”.

ACCESS TO EDUCATION

Of great concern, to me, is access to education. This must be a priority. Sadly, more than 10 years after the Report on Access and Inclusion for Persons with Disabilities in the Jamaican Education System by Senator Floyd Morris, there is much to be done. Rifkin and Pridmore (2001) argue that ‘education is a powerful tool for the economic empowerment of people with disabilities’ because ‘people who lack education/information often lack power and lack choices about how to improve their lives.’

Unsurprisingly, the Public Expenditure Review of the Education Sector in Jamaica which was published in June 2021 by World Bank and UNICEF revealed spending for special education is low. This has been the case for several years when, as reported, expenditure for early childhood and special education was about 3 per cent of the education budget. According to the report, “Special education spans the first three levels of the education system, designed for children who find it difficult to learn in a regular school setting without specialised support services.” Therefore, the one per cent we are spending on special education for those with such needs in early childhood, secondary and tertiary schools is awfully low. Most of the money, 91 per cent, in this regard is allocated to staff compensation. Interestingly, the report points out that 45 per cent ‘subsector is devoted to schools for students with learning disabilities and 21 per cent to schools for hearing-impaired children’.

If Jamaica is to be the place of choice to live, work, raise families, do business, and retire it must include people with disability. For this to happen, laws and policies must be enacted, promoted and compliance enforced to protect their rights, dignity, livelihood, and well-being. Importantly, such positive development, including the Disabilities Act, must be followed by budgetary allocations for education, health, social and other services to enable greater access and the requisite support so they can live their fullest potential.

We sincerely hope that some of our politicians will recognise the injustice meted out to children with disability and their parents and caregivers and thereby be their champion. Let’s ensure there is more in the budget for them this time around.

Jaevion Nelson is a human-rights, economic and social justice and inclusive-development advocate. Send feedback to columns@gleanerjm.com and jaevion@gmail.com, or follow him on Twitter @jaevionn.