After refusing to leave Vancouver General Hospital until her health care needs were met, Langley’s 22-year-old Tavia Marlatt is a step closer to receiving what she needs.
Tavia suffers from epilepsy, and can have anywhere from six to 50 seizures a day. Last week, she was at VGH undergoing a series of epilepsy tests that revealed she’s been having seizures from three parts of her brain.
Through a YouTube channel, Tavia documented her stay at the hospital, and said she was refusing to leave the hospital until she was given at at-home care plan.
“Basically, what the plan is, is stay here until my needs are met or the police come,” Tavia explained in a YouTube video.
Fortunately, officials from Langley Memorial Hospital agreed to meet with Tavia and her mother, Renee, last Friday to discuss health care options.
Renee explained the family has been asking the Fraser Health Authority for in-home care support at their family home since Tavia turned 19. She said there is a gap in funding from when children age out of school, and become adults.
Prior to the meeting, Renee said Fraser Health has repeatedly denied funding for in-home care, and has instead suggested Tavia live in a group home.
“We want funding released to have staff at home,” she added.
On the same Friday, Tavia agreed to leave the hospital on “good faith” that long-term funding will soon be provided.
Tavia was diagnosed with epilepsy at age seven, and the severity of it increased when she was eleven.
According to Renee, Tavia’s condition was more manageable when she was school-aged, because the family had the support of her being at school during the day, with people who could administer medications if needed.
Since becoming an adult, the medical system has failed Tavia, according to Renee.
“She needs support to be successful, and hasn’t been given the opportunity to be successful, and that’s hard to see. She [Tavia] says, ‘It’s hard to connect and make friends because they’re too independent for me.’ It’s hard to watch her suffer.”
Renee confirmed there is now short-term funding in place.
After Friday’s meeting, Renee said there is now a proposal for long-term services being drafted, and she is hoping to find out more information by the end of this week.
“They [Fraser Health] recognized there’s a gap in services,” added Renee.
“This isn’t just for Tavia, it’s for any person with epilepsy.”
Fraser Health confirmed they met with the Marlatt family.
“We continue to have ongoing conversations and work on a plan to support the patient’s needs,” Fraser Health said in a statement.
Currently Renee is unsure what type of funding they will receive, but hopes it will be long-term funding to access Choice in Supports for Independent Living (CSIL) – a self-directed home support services program.
“The benefit of having individualized funding is you can customize those supports to be responsive and flexible to a person,” added Renee.
Ideally, Renee is hoping for an in-home support system that is able to administer Tavia’s medications, bring her out into the community, and take her to activities such as her volunteer job.
This would also allow Renee to go back to work, since she wouldn’t have to stay home to care for Tavia herself.
“We’re very hopeful those supports will be in place. As a parent, it’s been really encouraging to see her [Tavia] taking a strong role and lead in advocating for people with epilepsy.”
Renee emphasized her and Tavia’s advocacy isn’t just for their own family needs.
“Our goal is that this isn’t just something for Tavia. Hopefully it will further support change for people with epilepsy or invisible disabilities.”
Is there more to this story?