Down Syndrome clinic funding changes alarms parents
Province insists parents and patients will see no differences in care
CBC News
Posted: Nov 7, 2012 1:50 PM MT
Last Updated: Nov 7, 2012 6:50 PM MT
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.
Share Tools
Latest Edmonton News Headlines
- Lindale fire doubles in size within hours
- A fire which was discovered west of Lindale, Alta. around 3 p.m. Wednesday more than doubled in size over a couple of hours. more »
- Smudge, the Hotel Macdonald's friendliest greeter
- Edmonton's Hotel Macdonald has taken an unusual step to help stressed-out travelers feel at home -- a 'canine ambassador' who welcomes guests with a wag of her tail. more »
- Hostage taking at Edmonton courthouse sends prisoner to hospital
- A female inmate allegedly used the lens of her eyeglasses to take another female prisoner hostage in the cells area of the Edmonton courthouse on Wednesday. more »
- Liam, Emma, most popular names for Alberta babies
- Liam and Emma were the top names given to Alberta babies in 2012, a record-breaking year for the number of births in the province. more »
Must Watch
Top News Headlines
- 2nd suspect in Tim Bosma case charged with 1st-degree murder
- Mark Smich of Oakville, Ont., is formally charged with first-degree murder in the death of Tim Bosma, the Hamilton man who disappeared earlier this month after taking two men on a test drive of his truck. Smich's arrest follows the first-degree murder charge against Dellen Millard of Toronto. more »
- U.K. attack suspects were focus of past security probes
- WARNING: This story contains graphic content. Two men accused of butchering a British soldier had featured in previous investigations by security services, a British official said, as investigators tried to determine whether the men were part of a wider radical Islamic plot. more »
- Neil Macdonald: Harper no Obama when it comes to dealing with scandals
- Beset by three so-called scandals at the moment, Barack Obama has been meeting his accusers and the press head on, Neil Macdonald writes. The same cannot be said for how Stephen Harper operates. more »
- Needed: New approaches to defuse 'suicide contagion' among teens
- Mental health experts say we need to find new ways to refer to and discuss suicide, particularly now that a large medical study has confirmed that teens are more susceptible to the idea if they know a schoolmate who died that way. more »
- Smudge, the Hotel Macdonald's friendliest greeter
- Hostage taking at Edmonton courthouse sends prisoner to hospital
- Lindale fire doubles in size within hours
- Photocopier bill could topple Edmonton charity
- Postal workers strike in Fort McMurray
- Edmonton driver, 62, charged in boy's patio death
- Liam, Emma, most popular names for Alberta babies
- Driver too drunk to stand, says mom of toddler killed on patio
- Edmonton Remand Centre lawsuit angers family of stomping victim

