Five-year-old Emiliano Hernandez doesn’t know that he is the subject of a new short film documentary, or that his family’s story was featured in the Left Out report.
Released Dec. 3 by B.C. Representative for Children and Youth Dr. Jennifer Charlesworth, the report delivered a scathing rebuke of the Ministry of Children and Family Development for not providing adequate or equitable support for families of children with complex medical needs.
Emiliano doesn’t know that that his mother, Diana Salcedo, is the family’s sole support, that his father is a full-time caregiver. He doesn’t know there is a global pandemic or that the lack of services and support has exhausted and diminished and nearly broken the family.
He does know he loves ice cream and chocolate, the feeling of sunshine on his face and the attention of his older brother, seven-year-old Jeronimo.
Emiliano was a healthy, full-term baby, but he developed jaundice two days after his birth. There were extreme complications, as he went into cardiac arrest and sustained permanent brain damage.
“He’s a warrior,” says Salcedo.
Emiliano has cerebral palsy and can’t hold his head up, sit down or stand. He is deaf and blind, has breathing difficulties and a sleep disorder. He needs six medications daily, can’t be left without supervision and his parents have to hold him upright when he sleeps.
Neither Salcedo nor her husband have had more than one or two consecutive hours of sleep in years.
The family relies on the province’s woefully inadequate At Home program, which was designed to provide equipment and support for families to care for medically complex children at home. The program provides the family with just five hours per week of respite care — care that has been all but impossible to access during the pandemic.
Emiliano’s father, Cesar, provides the daily care for Emiliano, unpaid. (If they gave Emiliano over to the foster system, a foster family would be paid to care for him — but that is something Salcedo said the family could never consider.)
“The support we receive is not enough to cover his basic medical needs, equipment and therapy. One of us has to care for him and can’t work, so we will never be able to have two incomes. It’s extremely challenging.”
Because Emiliano is immune compromised, the family is deeply isolated, and the effect this has on Jeronimo weighs heavily on his mother: “He hasn’t been able to play with another kid all year,” said Salcedo.
Salecedo said families in their situation desperately need accessible vehicles and accessible housing.
“I need to drive my son to the hospital every week — it’s not a luxury. Many families are stuck at home once the kids turn 12, 13 because they can’t transport them.” (The family recently had to turn down an electric wheelchair from the Variety Club because they don’t have the specialized van they would need to transport Emiliano in the chair.)
Salcedo has tirelessly advocated for families of children with complex medical needs. Two years ago she and other families prepared a report for the At Home program directors and presented it to the Ministry of Children and Family Development. “It didn’t make a difference,” said Salcedo.
Now 19-year-old Vancouver Film School student Nadine Widjaja is hoping to make a difference. Salcedo was her guardian when Widjaja came to Canada from Indonesia as a minor to study at the film school.
Widjaja didn’t have to look far when she needed a subject for a short documentary project. She had spent time volunteering in orphanages in Indonesia and understood the struggles that families of medically complex kids face in a developing country with no system to support them. She just never expected to see it here.
“This is not something I was expecting to happen in Canada. Canada’s system is letting people down instead of helping them,” said Widjaja.
Salcedo had been a supportive ally as Widjaja adapted as an international student far away from her own family. “I thought I had it hard trying to figure things out, dealing with a new culture and managing school and not sleeping because of assignments, then I listened to Diana’s story.”
Widjaja wanted to give back. “I am shocked by what she has to do every single day to make sure her family is well and healthy and provided for every day,” said Widjaja. “Not a lot of people seem to know that this is happening in Canada.”
Salcedo said families like hers are hidden, and it’s easy to turn away from what can’t be seen: “Nobody knows what is happening to us.”
Widjaja, who wants to share her film as widely as possible, hopes to change that.
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