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Happy 19th Birthday Samantha and Congratulations Velvet

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on Wed, 06/06/2012 - 21:46

Local advocate wins service award

Edmonton mayor recognizes Velvet Martin's tireless advocacy for the vulnerable

By: Scott Hayes

St. Albert disabled persons advocate Velvet Martin recently earned an award usually reserved just for Edmontonians.
Martin spent years pushing for a new law to improve the rights of children with disabilities and their families after her 13-year-old daughter Samantha died while in a foster home. Martin’s efforts earned her an award for outstanding service from Edmonton Mayor Stephen Mandel during

his annual mayor’s awards ceremony recently.
Martin said the honour makes her feel humbled.
“I hadn’t even prepared a speech. I just spoke from the heart when I went up … mostly about just the fact that the award actually recognizes Samantha,” she said.
Mandel gave Martin the award for outstanding service for advocating for the rights of children, youth, vulnerable persons and seniors in her community.
“I am inspired by these individuals and organizations who are building a more inclusive city where all Edmontonians can participate fully and share their gifts with the community. My congratulations and thanks to all the award recipients and nominees,” Mandel said in a prepared statement.
Samantha’s Law, the reason that Martin was able to receive the award, is an amendment to the Alberta Family Support for Children with Disabilities Act. It requires that participants in the Family Support for Children with Disabilities Program are recognized as legally distinct from children in protective services under the intervention model.
It means that the government needs to involve the families when figuring out funding for children with special needs.
“What Samantha’s Law did … it changed the way that the legislation looking at parents of children with disabilities focuses now,” she began. “Now you do not need to have your child move out of home in order to access the services. The services are provided to the family.”
She called the previous legislation an “archaic way of looking at individuals with disabilities.”
“When my daughter was born in 1993, we were actually forced to place her into an outside home for care because the government wouldn’t support natural families in home, which is totally crazy. Now what the legislation does is it defines children with disabilities in good homes separately from the child intervention model.”
All in the name of her daughter
Samantha Martin was born with a rare chromosome disorder called Tetrasomy 18p that results in several severe congenital abnormalities including a malformed heart and hip dysplasia. The Martins were forced to send Samantha to a foster home in order to access funding and services. She died in that care after suffering a heart attack at the age of 13.
Now employed by Transitions – the St. Albert agency that offers programs and services for people of all ages with disabilities – Velvet Martin continues to work hard to improve living conditions and make lives better every day.
Executive director Paul Fujishige said the award was well deserved. He called Martin a huge asset to the organization.
“Velvet is a true advocate and supporter of people with disabilities,” he said. “It was a tragic situation for her family but I do applaud her for turning the tragedy into something positive. It’s employees like that that are inspiring.”
Because the ministry of children’s services was involved in the case of her young daughter, there was a publication ban that prevented her from speaking about the system. Now, she can speak freely.
“To see her name on the plaque, that was huge for me because there are just far too many children that are dying anonymously and publication bans are protecting the wrong individuals,” Martin said. “It was really good to be able to tell her story and make sure that this doesn’t happen to somebody else.”
There are still things she wishes she could talk about but can’t at the present because of a fatality inquiry into her daughter’s death. The inquiry wrapped up in November but its report hasn’t yet been released.
Martin also works at the Glenrose Rehabilitation Hospital helping families who have experienced a disability. She is also the spokesperson for Protecting Canadian Children, a group whose purpose is to stop abuses within the foster care system.

 

Addendum:  Samantha would have/should be celebrating her 19th birthday yesterday, June 4th, but will forever be just 13 years of age. As I have relayed to others, I was so concerned with teaching Samantha, but it is in hindsight that I see it was she who was always teaching me. I am so glad to have been chosen to be Samantha's mom. I love her and miss her dearly. Our family unit is broken, but I will continue to honour our child's life by helping others in the hope that no other child or family endures what we did.

*For clarity: Samantha did not die in the placement. We were able, at long last, to bring our little girl home where she blossomed for 6 wonderful months before sudden collapse. Samantha left the medical placement at 13 years of age weighing 50 pounds. Within a few months, she had attained an additional 10, which was 20% of her body mass. Samantha learned to toilet over the summer months. And, after 13 years of silence, she began to speak! Teachers describe Samantha as, "A butterfly who emerged from her cocoon." Upon monitoring Samantha now on a daily basis, concerns for possible seizures emerged and were witnessed also by school staff and pediatrician. Samantha was scheduled to undergo an EEG and commence treatment, but suffered a fatal heart event one day before the procedure. We learned that the disorder had initially been identified on Samantha's 3rd birthday, but the medical placement opted not to intervene as directed by medical authorities, nor inform us, natural family and legal guardians of our child. The caseworker was aware, but failed to ensure that follow-up occurred by caregivers.