For Sister-in-Charge Candace Kewley, rehabilitation is as much about supporting families as it is about treating disabilities.
FOR many families raising children with disabilities, the challenges extend far beyond medical care. Daily transportation struggles, financial pressures, social stigma and the demands of round-the-clock caregiving can leave parents exhausted and isolated. At the Ptolemy Reid Rehabilitation Centre Dormitory Day Care, however, care is built around both the child and the family. Through a range of services that include 24-hour residential care, temporary weekday accommodation, respite care and after-school support, the centre has become a vital source of assistance for dozens of families across Guyana. Sister-in-Charge Candace Kewley said the facility’s approach goes beyond nursing, with staff viewing themselves as surrogate parents who provide not only medical attention but also love, stability and encouragement.
In an interview with the Pepperpot Magazine earlier this week, Kewley, a registered nurse, registered midwife and rehabilitative nursing educator, explained that the Ptolemy Reid Rehabilitation Centre is part of the National Rehabilitation Complex, which houses the Dormitory Day Care among its services. Speaking about how the facility operates, she shared that its offerings are designed to meet the needs of families of children with disabilities at the point of need, with each service addressing a distinct yet interconnected challenge.
Sharing insight into the day care services, Kewley added, “We have children that come on a daily basis, and they get cared for between 07:00 hours and 17:30 hours. We also have children who come Monday to Friday; we call that the temporary resident service, where they come on Mondays and they get cared for until Fridays. This is provided because we find that we have parents, especially single mothers, who have difficulties with transportation.”
Another hurdle the day care works to address is the difficulty of travelling with children who have disabilities, a challenge made harder by a lack of public awareness about disabling conditions and the children who live with them. Unpredictable behaviour or the possibility of a seizure mid-journey can make public transportation a stressful experience for families. The financial burden of daily taxi fares from outside the catchment area is also something the day care works to ease through the temporary resident service.
Explaining this, Kewley noted, “To save our parents that, and also the financial constraints of taking a taxi back and forth out of the catchment area, we said to these mothers and parents: you can bring the child on Monday, we will take care of the child through the week, and you can pick the child up on Friday.” She added, “While the child is here, we liaise with all the other departments so that they can have their treatments. They get their medication and everything while they’re here. If they attend school, we also prepare them for school.”
Moreover, for children entering the public school system, the aftercare service bridges the gap by working with both children and their parents to ensure that all their needs are met as they learn and integrate into a traditional school setting. As Kewley added, “Our children who are being integrated into the public-school setting come into us to get their hygiene needs met, diapers changed, they get their meals if they’re on special meals, they get their medication. We understand our children, and we say, half day, you can send them back to us, we will take care of them,” she said.
Furthermore, for those with nowhere else to go—children left at hospitals with no known relatives, or whose home circumstances are not suitable—the centre becomes something more permanent, with Kewley noting, “Those residents are always here, our young adults,” Kewley said.
The respite service, meanwhile, is built on a different but equally important recognition: that the caregiver, too, needs care. As Kewley highlighted, “It takes a community to raise a child, and when you’re looking at the community, you look at the parents, you look at the caregivers as well.” She added, “There is a mother who is taking care of this child 24-7. Maybe she needs a day to get her documents in order, or a day to get her medical check-up, or a day to just go to the spa and relax and unwind, so they can be refreshed to continue their care. You bring the child, we take care of the child, and you pick the child up. That is our respite service,” she said.
Approximately 70 per cent of the children in the centre’s care have cerebral palsy, with the remaining 30 per cent presenting with conditions including microcephaly, hydrocephalus, Down syndrome, spina bifida, epilepsy and, in rare cases, Kabuki syndrome. The 2016 Zika virus outbreak left a lasting mark on the facility’s population, with the surge in microcephaly admissions that followed still reflected in the children, now young adults, who remain in the centre’s care today.
As Kewley explained, “Those babies are still with us because they do not grow chronologically. We have children who are adults, 27 and 28 years old, but stuck in infancy. You have a child roughly the size of a three-year-old but with the age of an adult because they are developmentally delayed.” While the facility works to meet medical, dietary and health needs, care remains equally central to its mission, as Kewley shared, “All they need is just love and care.”
That philosophy underpins every aspect of care at the centre, with Kewley noting that staff are not simply trained to treat, but encouraged to love. As she shared during her interview, “We do not view ourselves as nurses; we view ourselves as surrogate parents, surrogate mothers. I am a parent of this child, and I give the child the best care I can,” she said.
This approach is backed by continuous staff education and training, as well as close observation and attention to the children. “We constantly keep educating ourselves and keeping ourselves abreast of new treatments and changes. It’s constant intervention. When you notice any changes, you keep observing them—constant observation and intervention,” she said.
Rehabilitation Week saw the centre take this work well beyond its walls. Staff visited health centres across communities on paediatric and outpatient clinic days, conducted outreach, followed up with patients, and made referrals where needed. Workshops, including sessions on 3D printing, were held alongside a health fair and a community walk.
Speaking to parents of children with disabilities, Kewley offers both practical and compassionate guidance. Adequate folic acid intake, appropriate birth spacing, prenatal awareness and community information-sharing are all tools she urges parents to embrace.
As she shared, “If you have a child with a disability, don’t give up. There is so much advancing technology out there. Arm yourself with the knowledge, arm yourself with the necessary resources. Research and see what your child needs. If you’re not sure, find out.” She added, “Share information parent to parent. If you have a child with a disabling condition and you notice another parent has a child with the same condition, share information.”
At the Ptolemy Reid Rehabilitation Centre, that spirit of shared purpose is not just advice; it is the foundation on which every service, every shift and every act of care is built.
