One third of children living in children’s homes across Jamaica have a disability and the large majority have CP.
However, most staff, at all levels of the system, have no training or experience working with children with disabilities.
This means that an estimated 1000 children with disabilities living in these facilities have no access to therapeutic interventions. In fact, many are kept in bed or left sitting in their wheelchair all day with very little input or engagement.
In 2015, the Nathan Ebanks Foundation (NEF) was tasked by the national Child Development Agency to provide targeted training and support to staff working in children’s homes in Jamaica.
The specific objective of the project was to train caregivers on basic interventions to improve the children’s ability to participate in activities of daily living through:
- toileting and hygiene with dignity.
Drawing on both the M.O.V.E. (Mobility Opportunity via Education and Experience) International program, and the Working with Cerebral Palsy in the Community Manual, NEF set out to develop a program. Partnering with the UK organisation Multi Agency International Training and Supports (MAITS), the team developed a training curriculum specific to Jamaica.
Funding to develop and implement the project came from a number of grants and sponsors, chief of which were MAITS, Rangoonwala Foundation and the Supreme Ventures Foundation.
The end result was a rehabilitation aide support training model comprising three components:
- a three-day pre-knowledge workshop – six modules, giving an introduction to disabilities and their impact of daily living
- a 10-day practical skills course involving hands on training by an occupational therapist and speech therapist – including assessment of the child, assessment of the environment, interviewing the caregiver, and development of skills and activities for the child
- placement in a children’s home to work with children with CP and their caregivers (pilot was a six-month placement).
Preparing for take-off
A number of challenges had to be overcome before the pilot program could commence. Bad weather (Hurricane Matthew), difficulties recruiting and securing trainers, as well as logistical issues all combined to delay commencement.
When the program finally started in October 2016, 30 trainees attended the pre-knowledge component. From this group, five were selected to go on to become Rehabilitation Aides (RA). They had various levels of experience, however all were passionate about working with children with CP.
Once the first two components of the program were completed, the RAs were placed in a children’s home to work with children and their caregivers for six-months.
The pilot location was West Haven Children’s Home in rural Jamaica, home to approximate 100 children and young adults with disabilities, the majority of whom had moderate to severe CP. Despite their diagnosis, these children received no therapy or rehabilitation support prior to the project.
NEF founder Christine Staple-Ebanks described the condition of the children as dire, particularly those with no mobility.
“Five of the children had serious medical conditions warranting emergency treatment. Two had been aspirating food into the lungs, two had severe hip dislocation and were in excruciating pain, and one had a shunt in her head that had shifted position,” she said.
These findings reinforced the original concerns regarding the lack of understanding and training caregivers at the children’s home had in relation to children with disabilities.
Making an impact
While working on placement in West Haven, the RAs worked alongside 18 caregivers and four teachers employed by the children’s home, providing direct support to 12 children.
The feedback from the existing staff members at the completion of the project indicates that the presence of the RAs not only had a direct impact on the wellbeing of the children they were working with, but also the staff as well.
Many staff reported feeling more confident working with the children and having a better understanding of their potential capabilities.
One staff member stated in the project review interview: “The RA has helped me understand more about kids with CP. I have gained knowledge and my confidence has excelled to the point of working with other kids, not just the ones I was taught to work with.”
Through the Rehabilitation Aide Support model, the children with CP involved in the pilot at West Haven now have better health outcomes, functional skills and overall quality of life.
Onwards and upwards
Following the pilot program, the trained RAs quickly secured employment – four with West Haven and one through a private family.
NEF has had many more requests from families and services looking for trained carers to help support their children with CP.
Fortunately, NEF have plans to continue with the West Haven training, as well as looking to scale the program to suit other environments such as community, in-home care and day care centres.
Its is also looking to develop national care standards for working with children with CP in children’s home.
“In the long-run, a nationally recognised program for RAs in Jamaica, can contribute to saving these children from a life of mere existence, and being cared for by people who don’t understand their needs,” says Christine Staple-Ebanks.
“The Rehabilitation Aide model and caregiver training provide these children with the possibility of a healthier, happier life, learning to do things for themselves – not merely surviving but thriving.”