Families face "Triple Threat" in caring for children with disabilities – UNICEF report

UNICEF/2019/Hunter

Director and Principal of the Early Stimulation Programme (ESP) in the Ministry of Labour and Social Security, Antonica Gunter-Gayle together with students at the Early Stimulation Centre in Kingston.

The monthly costs of caring for a child with disabilities far outstrip the income of many Jamaican families, according to UNICEF Jamaica.

The report, Caring for Children with Disabilities: Managing the Triple Threat to Families, commissioned by UNICEF in collaboration with the Ministry of Labour and Social Security has found that while respondents’ monthly earnings did not exceed J$29,000, most families with a child with a disability spend close to J$50,000 each month on food, diapers and transportation. These expenses were among the most significant monthly costs and when routine therapy services, medication and special education are added the costs skyrocket to upwards of J$220,000 monthly.  

The research on the socio-economic impacts of disability on children and their access to social safety nets will be released during Disability Awareness Week 2022 which is observed from December 3 to 9.

More than 60 per cent of the respondents in the study, reported that half or nearly all of their household income goes towards caring for the child with a disability and given the high costs, they are unable to afford many of the services.

“The extremely high costs are cause for concern especially for children with disabilities from the most disadvantaged households and even more as we consider the devastating effects of the COVID-19 pandemic on the poorest families,” said Vicente Teran, Acting Representative, UNICEF. The triple threat to families with children with disabilities identified by the report were the economics of care, the cost of care and the barriers to care for children with disabilities.

In examining the economics of care, the study found that 43 per cent of respondents were unemployed and most of these persons were out of work for more than one year (85 per cent). Many reported becoming unemployed after their child with a disability was born and remained unemployed out of an obligation to care for the child at home. Some mothers explained that they felt they had to stay home and take care of the child as they did not trust anyone else to do so. They felt no-one else was capable of providing care or feared other people would mistreat the child.

The expenses associated with caring for a child with a disability push up the costs of care and reduce the family income. Some monthly costs range from J$28,000 for childcare to J$48,000 for speech therapy.  Even if the family is living above the poverty line, the additional expense means there is little disposable income, family members live from hand to mouth, and any economic shock could push them into poverty.

The study also identified significant barriers to care for children with disabilities. While financial support for people with disabilities is available from the Jamaica Council for

Persons with Disabilities (JCPD) and the Ministry of Health and Wellness (MOHW), it is not tailored to children’s specific needs. As such, children with disabilities must compete with other groups for limited funds. Their families also face significant challenges in accessing funds from the Programme of Advancement Through Health and Education (PATH) based on criteria which often require the household to be deemed poor or an agent to act of their behalf.

The report specifically recommends a separate social safety net programme for children with disabilities.    

“This would be a game changer for children with disabilities in Jamaica,” said Teran, adding that there was an urgent need to enhance current social safety net provisions to better target and protect vulnerable children in Jamaica.

UNICEF has started work with the government of Jamaica under a US$1.2M Sustainable Development Goals (SDG) Joint Programme to explore improving the social safety net’s targeting of children with disabilities and the introduction of shock responsive social protection measures, especially for persons with disabilities. The report and other planned interventions will be used to advocate for specific changes that are needed to fulfil the rights of children with disabilities.