Down Syndrome clinic funding changes alarms parents

Edmonton parents of children with Down Syndrome say they feel abandoned by the province after Alberta Health Service abruptly pulled funding from a clinic at the Stollery Children's Hospital.

Province insists parents and patients will see no differences in care

Shelley Wywal, with five-year-old daughter Elora, worries about funding changes at the Edmonton Down Syndrome Medical Clinic. (CBC)

Edmonton parents of children with Down Syndrome say they feel abandoned by the province after Alberta Health Services abruptly pulled funding from a clinic at the Stollery Children's Hospital.

The Edmonton Down Syndrome Medical Clinic's nurse-coordinator provides care and arranges treatment for 180 children from Edmonton to northern Alberta.

The province says it will no longer fund that position, but is looking for alternative sources for the money. That alarms some parents.

"Are we going to be distributed to other pediatricians?" asked Shelley Wywal whose five-year-old daughter Elora has Down Syndrome. "I can't even image what that's going to be like for our family. To go through that again, I'm overwhelmed."

Health Minister Fred Horne said on Wednesday that the clinic isn't closing and that discussions are ongoing.

"AHS is talking with the families and the community organization today that supports these families," he said. "So we're interested in the needs of those patients and their families and ensuring that they're met and I have every reason to believe that Alberta Health Services will see to that."

The clinic's pediatrician, Dr. Melanie Lewis, told CBC News that she's been led to believe the clinic is closing. She insists investment in the children is worth much more than the salary of one nurse.

"I feel that unless we advocate for this population and we give them the services they deserve, they're just not going to reach the potential I know they can. "

The nurse-coordinator meets with parents as soon as they learn their infant has Down Syndrome and eases the fear and bewilderment parents first feel, said Wywal.

"That lifts such a huge burden and when you meet new families, they're standing taller, they absolutely feel empowered," she said. "They feel like their child is valued. It's an amazing gift that she gives a new family."

The nurse-coordinator position relied on funding from the Edmonton Down Syndrome Society from 2008 to 2011 when Alberta Health recognized that the services were not 'value-added services' but essential services, said Sandra Azocar, executive director of Friends of Medicare.

"Health services for children and their families in this province should not have to rely on the ability of organizations or individuals to fundraise," says Azocar. 

Alberta Health Services said it is committed to providing care at the Down Syndrome Clinic and patients and their families will see little or no change in the care they receive.