With limited resources, an island nation cares for its disabled youth

A patient’s room at Care Project in Antigua & Barbuda. Note the cracked mirror on the left. Bars and wooden barricades have been placed on the door and windows due to the patient’s psychiatric episodes.

By Chris Cameron

At the entrance to what was formerly the children’s hospital in the small island nation of Antigua & Barbuda, a young man lies in his cot, his legs twisted and emaciated, rendered mute by his cerebral palsy. He has lived his entire life in these halls, unable to utter a word, yet he greets visitors with a smile.

Reorganized as a department of the Antiguan Ministry of Health in the aftermath of the 2015 election, the Care Project initiative was founded to cater for the needs of children with disabilities and special needs in Antigua & Barbuda.

Some of the patients in the facility are in their 20s and 30s, stunted by their disabilities, appearing no older than an elementary school student. Others are newborn babies, permanently impaired at the beginning of their lives.

“As a mother, it’s very hard,” Kendacy Parks said, cradling her month old son.

Parks’ son suffers from hydrocephalus, a condition where the brain is swollen with spinal fluid. While the future is unclear for her child, Parks said that Care Project has been a lovely environment for his care.

“It’s my first day over here, and it’s been very welcoming,” Parks said. “It [his condition] really took me by surprise. I worry … very much worry. But for now, I’m just taking it one day at a time.”

The girl’s ward of Care Project. Juliet Delabastide, the program’s matron, said that the Ministry of Health limits who can photograph or even speak directly with patients.

While Care Project had only recently been validated as a government health care program, the organization had started out caring for developmentally disabled children who had been left behind when new hospital facilities had been established at Mount St. John’s Medical Centre in 2009.

“When Holberton [the old hospital] was transferred to Mount St. John’s, there were persons here that were basically abandoned, developmentally challenged children,” Matron for the Care Project Juliet Delabastide said. “When we came there were a lot of challenges, but we needed to put some sort of structure in place and improve the quality of life for those who are here.”

Staff shortages and late payments for supplies have harried Care Project in its state-sponsored infancy, Walton Edwards, Operations Manager of Care Project, said.

“We have gone to our merchants and they would say to us that they can’t provide, because they’re not being paid on time. And so you would see how this would impact what we do,” Edwards said. “From the time we started [in 2015], we’ve had that challenge. Despite the many times I’ve had to visit the treasury, things haven’t really changed.”

A shattered window in the children’s ward of Holberton Hospital, where Care Program currently operates. Antigua & Barbuda’s Minister of Health Molwyn Joseph has announced a standalone facility for Care Project, but there is no clear timeline for the completion of the facility.

A delay in payments reduces trust between Care Project and its merchant suppliers, Edwards said. He added that they’ve had to switch suppliers for medical equipment several times in the past, which makes the process of ordering supplies for the initiative’s patients more cumbersome.

“What we don’t like to do is change from merchant to merchant all the time. Because you have merchants you have developed relationships with over the years,” Edwards said. “And then you have a situation where you have a lot of merchants, but you’re not able to pay them, so you owe a lot of people.”

Bolstering Care Project’s staff with more permanent and specialist workers is one of the long term goals for the project, Edwards said. He added that this has been a challenge, as most of the staff currently working at Care Project are still on the payroll of other departments within the government.

“Most people, when they’re paid from a particular department, they feel comfortable that they’re a part of that department,” Edwards said. “We’re still waiting to stabilize our staff … They’re in a quandary because they’re not permanent.”

While challenges remain for Care Project, community-spirited persons who donate their time and resources to assist the initiative have allowed the staff to cope with the financial burden, Matron Delabastide said.

“When governments do their part, and put things in place, you need a continuity and you need the support,” Delabastide said. “The service we provide is ongoing, and its the developmentally challenged we deal with. So yes the ministry gives its supplies, but we do need a little extra all the time.”

The Ministry of Health and the Friends of Care Project Foundation said that they are planning to build a new facility for Care Project. Estimates for when the facility will be finished have not been given, but Minister of Health Molwyn Joseph said in a press release in December that they will break ground on the project “within a short time”.