Supports are available: Alberta Health Services denies FASD testing for Edmonton child

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In response to the CBC article Alberta Health Services denies FASD testing for Edmonton child’ we want to share with Albertans that we and others are there to provide supports and services.

Raising a child with Fetal Alcohol Spectrum (FASD) can be exhausting. The parent and caregiver role can be filled with many trials, tribulations, and successes. For some, it is a 24-hour a day job of providing supervision, behaviour and risk prevention, and constantly educating those around you on what it means to parent a child with FASD and what does it mean to have FASD. Individuals (children, youth, and adults) with Fetal Alcohol Spectrum Disorder, parents and caregivers, and finally communities all need support.

The Edmonton and area Fetal Alcohol Network Society is one of 12 provincial FASD Service Networks that is there to ensure that parents and caregivers do not feel alone or isolated and have the tools needed in their toolbox to effectively raise their child or children with or suspected to have FASD from a strength-based approach with hope. With comprehensive supports and services throughout Alberta, the diverse needs of individual, families, and communities are provided for through the regional FASD Networks.

In developing and delivering community-based solutions we strive to make it easier for people affected by FASD and their families to get the help they need, at any point during their life. The programs and initiatives across Alberta help build awareness, promote prevention, increase access to FASD assessment and diagnosis clinics, and provide support for individuals living with FASD and their caregivers.

For more information on the Edmonton and area Fetal Alcohol Network Society please contact the Coordinator, Lisa Rogozinsky, at 780-940-7108. For information on the regional FASD Networks, please visit http://fasd.alberta.ca/service-networks.aspx

Excerpt from CBC article:

Alberta Health Services denies FASD testing for Edmonton child

‘She won’t be able to work, because she won’t be able to have the strategies and training to succeed in life’

By Andrea Huncar, CBC News Posted: Apr 01, 2016 6:30 AM MT

An Edmonton woman who says she cannot get her 11-year old niece tested for fetal alcohol spectrum disorder lives in fear someone will get hurt.

“She hurts people as well as animals,” said the aunt, who is not being identified to protect the privacy of her family.

She recalled the day her niece took their puppy outside in winter and poured cold water on her for an hour and a half.

“She thought she was playing with the puppy,” said the aunt, who has cared for her niece for the past six years and has full custody.

“(She) thought that this was OK. Because she doesn’t know action and consequence.”

The girl has been refused FASD testing because her mother has not declared that she drank alcohol while pregnant, the aunt said.

But there’s no way to get that confirmation, because the mother lives on East Hastings Street in Vancouver.

“She is a crystal meth addict and she’s pretty much nowhere to be found.”

The woman said her niece is a “sweet girl” who loves to help out around the house, bake cupcakes, and lick the spoon.

Seemingly normal stuff. But everyday life is anything but, she said.

Girl dancing

The 11-year-old dances at the wedding of her aunt who has full custody of her.

“I have to say, ‘Come on, it’s time to get dressed’,” said the aunt, who has three girls of her own. “I have to pick her clothes out for her. I have to tell her to brush her hair and brush her teeth every day. I have to still wash her hair at age 11.”

The aunt has been convinced for years that such behaviour proves her niece needed help. “And we needed help, to help her grow into an adult and succeed in life.”

Recently, after academic and psychological testing pointed to FASD, her niece was referred to the Glenrose Rehabilitation Hospital for testing, the aunt said.

She believed a positive diagnosis would finally help them access supports, such as the respite care the family can’t afford at $34 an hour.

Then she got a call from the hospital. They told her they couldn’t do the test without the mother’s confirmation that she drank alcohol during the pregnancy, to protect her privacy rights, the aunt said.

“I was devastated, in shock, in tears,” she said, adding she felt alone and unsupported. What’s worse, she said, no one referred her to other sources for help.

Caring for her niece has taken such a toll, she has even considered giving her up.

For full article please visit: http://www.cbc.ca/news/canada/edmonton/alberta-health-services-denies-fasd-testing-for-edmonton-child-1.3514709

Retrieved from: http://www.cbc.ca/news/canada/edmonton/alberta-health-services-denies-fasd-testing-for-edmonton-child-1.3514709

 

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