Maia Chung-Smith, Contributor
THE POVERTY associated with caring for a child with a disability who grows into an adult with that disability, whether mental or physical, is grossly under estimated by many who are unfamiliar with the innards of such a dilemma.
The Maia Chung Autism and Disabilities Foundation has unearthed a number of cases where the parents, sadly, usually a single mother, cannot work due to her inability to find safe and affordable care for her child should she be able to get a job. Many family members, by their own confessions, are very harsh towards these people, oftentimes telling the parent, "Gi weh de pickney".
Where there is care, it is oftentimes too expensive, and, sadly, too far away, particularly to the many rural families impacted. This is especially so in the case of autism, where rural diagnoses are growing, according to statistics provided by Professor Maureen Samms-Vaughn.
Caring for the disabled individual means caring for their caregivers, missing a day's work, losing that day's pay, finding the food, bus fare, and proper care facility for the other siblings in that family while long journeys are made to far-away urban centres where the best treatments are available.
The care available becomes useless to the needy families who are not able to match the attendant costs.
In too many instances brought to its attention, The Maia Chung Autism and Disabilities Foundation has found that parents are not even able to by food for daily consumption, as they are caught in the vicious cycle of not being able to leave their child with a caregiver, friend or relative. Therefore, they are unable to earn a livelihood and cannot even maintain a decent standard of living for a person on the normalcy curve, much less the specialty of needs - food and medication - required by someone contending with a disability.
Government's underwriting of the costs of medical tests and clinical care, such as diagnostics, is not enough. It is the catch 22. Many families have told our foundation they cannot muster the additional wherewithal to get to these glorious offerings.
For the mother who lives in Westmoreland or St St Elizabeth to travel to Kingston, where the majority of the proper services and specialists are located, or even in other urban centres, more often than not they cannot find bus fare to get their children to these places.
Factor in that, someone has to care for well children while mother plans a bus trip with a challenged child. She has to come and wait at a clinic because this is all they can afford as opposed to private medical care, all the while trying to ensure the safety of the child from others who aren't au fait with the child's needs and can be abusive and unsympathetic. It is an ugly world when you're not 'perfect'.
Debating in Parliament
Directors from The Maia Chung Autism and Disabilities Foundation met with Labour and Social Security Minister Pearnel Charles last month, seeking his backing, which he gave, to begin debating in Parliament the need to establish a trust - which our directorship is willing to administer and monitor - to which these needy persons could apply to cover travelling costs, school fees, after-school care, which also falls into the list of services many parents of the disabled cannot afford - particularly in the area of autism.
The minister verbalised his support for the foundation's initiative and our intent to assist with the trust with financial help from interested and committed stakeholders.
The permanent secretary in the Labour and Social Security Ministry, Alvin McIntosh, has been assigned the responsibility to take the foundation's project paper to the House. It contains recommendations and a request for an annual subvention to the trust to assist those now floundering in the morass of disabled persons' care. The trust will have to eschew bureaucracy.
The freeness of hospital visits for children means little for many challenged individuals who need specialised care at places which do not fall under the net where free childcare is offered.
And while a few drugs, say for ADHD and autism, are covered by the National Health Fund, it is not enough. Many parents interviewed say when stacked beside the other essential costs, as well as other medications not covered by the NHF, the help in theory is appreciated, but in reality, there is not much help.
The proposed trust seeks to identify legitimate cases to provide funding for, not just tests and visits, but bus fare, lunch money if the tests take long, overnight accommodation, things that will actually yield results and possibly encourage more usage and treatments and enablement of the disabled.
The CHASE Fund, under its stated mandate, could assist in the formation of such a fund, but obviously, our community would need consistent governmental allocations for what should be an annual grant. We need overseas input and private-sector resources.
If these children who will become adults are not looked after, they will end up becoming a burden on society as they have to be maintained and cared for while developing into men and women. Childhood care is agreed by most physicians to be the more guaranteed path to having highly functional adults no matter what their challenge, within reason.
Maia Chung is managing director of The Maia Chung Autism & Disabilities Foundation.
Children with autism have problems with social interaction, communication, imagination and behaviour. Autistic traits persist into adulthood, but vary in severity.