British Columbia·CBC Investigates

Father with ALS fears lack of funds will keep him from son

Sean Tagert has ALS and needs 24-hour care at home — but with the regional health authority only funding 15.5 hours, he has exhausted his savings paying for caregivers so he can stay in the community with his family and young son.

Vancouver Coastal Health says there are alternatives to staying at home

Sean Tagert of Powell River using his EyeWriter to communicate.

Update: Sean Tagert contacted the CBC on Monday to let us know Vancouver Coastal Health has increased his hours of home-care funding to 20 hours per day. He was asking for 24.

Lou Gehrig's disease has already cost Sean Tagert his ability to walk, breathe on his own, feed himself and speak.

Now, the Powell River father fears a lack of funds may separate him from his 10-year-old son. The 40-year-old has exhausted his savings to ensure that he gets 24-hour-care at home. 

Tagert says he needs an extra $263.50 per day to remain in his home. He's asked Vancouver Coastal Health for the increased funding to ensure he can continue to live in Powell River.

Vancouver Coastal Health has assessed the former heavy duty mechanic as being eligible for 15.5 hours of home care a day under the Choice in Supports for Independent Living program. He and his doctor say he needs 24-hour care.

The health authority says Tagert could be relocated to George Pearson Centre in Vancouver where 24-hour residential care is available for those people who are no longer able to stay at home safely.

"It would be a death sentence," says Tagert.

'My boy is everything to me'

Moving to Vancouver would mean he would not be able to spend weekends with his young son Aidan. Tagert shares custody with the boy's mother.

If Tagert moved to a Vancouver residential care facility, his son would not be able to stay with him. He credits that relationship with keeping him going.

Sean Tagert and his son Aidan watching television. (Tagert family )

"My boy is everything to me. I wouldn't still be here if it weren't for him."

Tagert, who turned 40 on Friday, was diagnosed with amyotrophic lateral sclerosis (ALS) four years ago. He has managed to stay in Powell River through the support of his community, family and doctor.

He communicates through an EyeWriter, an eye-tracking device that allows a person to communicate using their eyes. He speaks with a computer-generated voice like the one used by physicist Stephen Hawking.

But Tagert needs 24-hour care to remove fluid from his tracheostomy site. He also needs to be turned every half hour.

He questions whether residential care would cost even more than the extra hours to bridge his home care, but neither he or his doctor have been able to obtain that information.

His physician, Dr. Stephen Burns, calls Tagert's medical setup at home in Powell River  "second to none," and says Tagert has done this at his own expense.

"He's an amazing person who has had everything taken away from him and he's still able to continue on and to find some meaning and quality of life."

'People... should not be warehoused away in facilities'

Burns is concerned  that Tagert, who has set up a complex communications system with his care workers when he is away from the EyeWriter, would not be able to communicate with constantly changing staff in a large facility.

Vancouver Coastal Health declined a request for an interview and issued a statement  that concludes:

"There are a range of options for care for those with complex health needs, including 24/7 residential care. We will continue to meet with and offer options to this particular client to ensure we understand his situation and that his care needs are met."

Dr. Stephen Burns is Sean Tagert's doctor.

Tagert's mother, Trish Mennitti, says the family is thrilled that Sean has made it to age 40, but an institution is not the place for a man who is aware of everything around him.

"People need to be cared for like human beings, at home ….they should not be warehoused away in facilities."

The community of Powell River has rallied around the family, helping to retrofit the home for a wheelchair, sling shower and EyeWriter setup.

'I'm a father. I'm a local'

A GoFundMe campaign raised more than $16,000 for the purchase of a dental suction machine, and a local dentist helped the family obtain one. Tagert's caregivers are all trained to use it.

Tagert says staying in Powell River is important to his identity and he is not just another ALS victim.

Trish Mennitti giving her son Sean Tagert a kiss.

"I'm Sean. I'm a father. I'm a local."

According to the ALS association, the average age for a diagnosis is 55.

Half of all people affected live at least three years after diagnosis. Another 20 per cent live for five years or more and 10 per cent will live more than 10 years.

Tagert says he plans to beat those odds.

With files from Belle Puri

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