Alberta Health Services has reversed a decision that families believed would have closed a Down syndrome clinic at the Stollery Children's Hospital.
AHS planned to stop funding a nurse coordinator who provided care and arranged treatment for 180 children in Edmonton and northern Alberta.
On Thursday, AHS released a statement saying the position will be maintained.
"Care provided at the clinic will not change, and we are committed to ensuring community supports continue," the statement said, adding: "AHS is sorry for the distress this has caused for the families."
Shelley Wywal, whose five-year-old daughter Elora has Down syndrome, said she was excited and relieved about the decision.
"But also a little bit cautious, because our level of trust that this clinic will carry on as it has has kinda been broken," she said.
"We're concerned with what's going to happen with funding in the future and how as parents we can be assured that we don't need to be afraid."
Province pulls funding for nurse co-ordinator position at Edmonton Down syndrome clinicAlberta Health Services will no longer be able to fund a nurse co-ordinator at the Edmonton Down Syndrome Clinic, parents of afflicted children have been told.
“It is absolutely devastating to my family to think we could go back to the position where we didn’t have anybody,” said Shelley Wywal, whose five-year-old daughter has received assistance from a nurse co-ordinator through the Stollery Children’s Hospital for four years. “It is incredibly important. I can’t even put into words how hard the situation is without one.
“Our kids have complex medical needs. It is extremely difficult to try to co-ordinate appointments and navigate through the system ourselves.”
Wywal and other parents said they were alerted several weeks ago the position is being dissolved by AHS as a cost-cutting measure.
The Edmonton Down Syndrome Society, which serves about 200 families from Red Deer to northern Alberta, is working with the health authority to come up with a solution, said the society’s executive director, Michelle Ponich.
“The clinic is still operating with the nurse co-ordinator in place because we are trying to find a resolution that will work for both sides,” Ponich said.
A group of parents decided about five years ago that a nurse dedicated to serving people with Down syndrome was needed, so money was raised to hire a nurse for two years. During that time, the nurse kept statistics and information meant to show the health authority the position was necessary, Ponich said.
Alberta Health Services absorbed the cost of the job about a year-and-a-half ago, Ponich said. But now it has decided to stop.
The authority is looking at alternative ways to fund the position and has a meeting scheduled with the Edmonton Down Syndrome Society later Wednesday, said Linda McConnan, executive director of the Stollery hospital.
“The situation is under review,” McConnan said. “We are looking at the program to see if we can deliver the services in a different place or way. I am very sorry for the concern or distress that is being felt by anyone that receives these services, but I want to reassure them that we are committed to providing ongoing care.
“I want to be really clear that the clinic is not closing. We understand that it is a medical necessity, and we are proud of the services and level of care our clinic provides. Parents, patients and the community can rest assured that that work will continue.”
The Friends of Medicare is criticizing the decision to stop funding the position, saying it follows a “disturbing trend” of reducing health services for kids with Down syndrome in Edmonton and Calgary.
The nurse co-ordinator job shouldn’t have to depend on the ability to fundraise, said Sandra Azocar, executive director of the group that lobbies for public health care.
“This is an essential health service,” Azocar said. “I find it reprehensible that this government is attempting to use that funding model to provide a health service for very vulnerable children.”
NDP MLA Deron Bilous blasted government over the issue during question period on Wednesday.
Only a year ago, Bilous said, government agreed the position was essential.
“They are trying to go back and requalify what is an essential service and what’s not,” Bilous said. “When it comes to cost savings, it’s a drop in the bucket compared to their (the Tories’) summer spending habits.”
Wywal and Shawn Sidoruk, the father of a seven-month- old daughter diagnosed with Down syndrome, believe that eliminating the position will cost Alberta Health Services more than it saves.
Sidoruk said the nurse co-ordinator is available to parents 24 hours a day, often consults with them when any number of health issues arrive, and helps arrange a variety of appointments.
Parents that call the province’s Health Link service are told to take their children to the emergency room as soon as the nurse on call learns their child has Down syndrome, both Wywal and Sidoruk said.
“When we call the nurse co-ordinator, she understands the issues and knows our child’s history and then tells us what we need to do,” Sidoruk said. “When our daughter was diagnosed, she was the person who reached out and came and saw us and lifted the burden off our back.
“We were very scared and didn’t know what to do, and she told us not to worry, to just love our baby.
“The position is central to all of us.”