'I am at my wit's end': Manitoba man says limited home-care hours too restrictive

Alex Lytwyn, a freelance writer living with cerebral palsy, has been trying for 10 years to get full-time, home-care assistance, but the current wording in the Vulnerable Persons and Home Care acts means his only viable option is moving into a personal-care home, something he's not comfortable with. He would like to see the acts amended.

Alex Lytwyn is calling for changes after a decade-long battle to get home-care hours increased

Alex Lytwyn needs help with daily tasks. He says the home-care hours he is allocated aren't nearly enough for his needs. (Riley Laychuk/CBC )

A Manitoba man living with cerebral palsy is calling for changes to the province's Vulnerable Person's and Home Care acts to end the suffering he says he endures while he tries to get more home-care hours.

Alex Lytwyn, 31, has lived with cerebral palsy — a disorder that affects body movement and muscle co-ordination — his entire life, and has a speech impediment. He is in a wheelchair and has limited use of his right hand. He says he needs a second set of hands helping him from the time he wakes up to the time he goes to bed.

Lytwyn gets some help though self-managed home-care hours — he is allocated 155 hours of help from a home-care worker bi-weekly, or about 10.5 hours per day. He has tried to get those hours increased for the past decade because he feels it is no longer adequate.

"I am at my wit's end," Lytwyn said at his home in Winnipegosis, Man., a small town about 280 kilometres northwest of Winnipeg on the shores of Lake Winnipegosis.

Lytwyn says his family helps when they can, but if they can't he is sometimes stuck in bed for 10 hours at a time or more. He feels his physical and mental conditions have worsened as a result of a lack of care. 

"My safety is at risk," said Lytwyn, a freelance writer who lives in a spacious, wheelchair-friendly apartment — with Toronto Maple Leafs memorabilia in nearly every corner — in a building that used to house a grocery store.

Fixtures such as his computer desk are built to Alex's height, and an automatic door has been installed. However, he says he's still had near-death experiences while on his own.
Lytwyn, 31, lives in an apartment in Winnipegosis, Man., that was built to accommodate his needs. Fixtures, such as his computer desk, are built to his height for easier use. (Riley Laychuk/CBC)

He recalls having the flu and vomiting in bed and starting to choke. Another time, he says, he left his apartment in the dead of winter after hearing a noise outside. His wheelchair became stuck, and he suffered severe frostbite before help arrived.

Doesn't qualify for full-time care 

Lytwyn says he doesn't qualify for full-time care under the Vulnerable Persons Act because he doesn't have a mental disability. He is also maxed out on help he can receive according to regulations set out in the Home Care Act, which says his next step would be moving into a personal-care home.

"At this point, I'm 31 years old … I shouldn't be forced to move into a personal-care home," said Lytwyn, who hopes to work and volunteer as much as he can despite his condition. "It is an option, but it's something I'm not comfortable doing."
Winnipegosis, Man., is a small town located about 280 kilometres northwest of Winnipeg. It lies on the western shore of Lake Winnipegosis. (Riley Laychuk/CBC )

He was also offered a space in a group home in Portage la Prairie, but wasn't willing to move that far away from his family in Winnipegosis. Both of his parents work full-time and live outside of town. He says moving back in with them isn't an option.

His mother, Sherry Lytwyn, says not having access to home care has meant her son has to plan every minute of his day.

He'll do things like sacrifice eating supper.- Sherry Lytwyn , mother of Alex Lytwyn  

"It breaks my heart," she said. "Every day it breaks my heart. I go to bed every night and I know that he's alone and I can't do anything about it and I don't have a million dollars to hire [private] care.

"He's suffering because of that. It's kind of been a plateau for a while. His needs are increasing."  

Sherry says Alex is very determined and volunteers at community events and activities whenever possible.

"He'll do things like sacrifice eating supper because he has to use the staff time to help out with the Christmas lighting of the tree. It's very restrictive," she said, adding the family cannot afford private home care, which had been presented as an option.
Sherry Lytwyn, Alex's mom, says she has been pushing for change to Alex's self-managed home-care program for about a decade. (Riley Laychuk/CBC)

Sherry says it's been a long, frustrating battle dealing with so many different government departments and representatives, and the family hasn't been able to get any answers.

"Everyone seems to understand and have empathy," she said. "But there's no one that we've talked to yet that can make change."

Calling on province to make changes 

"If he had more hours … he could live," Sherry added. "He could get up in the morning, the same as you or I, plan his day, know he is not going to worry about putting his coat on or eating or getting somewhere on time … he's got a lot to offer his community and he really wants to do that."

She's calling on the province to make changes, including seeing  the word "mental" removed from the description of the Vulerable Persons Act and changes made to home-care system to make it more patient-centred. 

"He can't be the only one. But maybe he is the only one — he's fallen though the cracks before," she said.  "As a mother it's a very painful process."

Lytwyn feels he's hit a peak in his life, and if changes aren't made he feels it could go downhill. He says he's had to turn down job opportunities for fear he might not have the hours or help available from workers to get to or from work.
Lytwyn says he still has a lot left to give back to his community, and doesn't want a lack of help to hold him back. (Riley Laychuk/CBC )

"My world has started to get dark and I'm not sure where else to turn," he said. "I do my best to be upbeat and positive but with each passing hour … it's really hard."

Lytwyn wants a one-on-one meeting with Manitoba Health Minister Kelvin Goertzen and Family Servies Minister Scott Fielding so he can tell his story and describe his struggles first-hand. 

"On paper it's one thing, but if I can sit down and explain to them why I need this care maybe they would understand," he said. 

"I've done everything I can do. All I need is a little bit of help to give back to my town and society."

When asked for comment, the Manitoba government said there are no plans to change the Vulnerable Persons Act.

"There is no intention to expand the application of the Act to those who do not have significantly impaired intellectual functioning," a spokesperson said via email. 

The spokesperson also said "individuals may qualify for government support through programs such as Employment and Income Assistance and marketAbilities."
Alex Lytwyn lives with cerebral palsy. He is calling for changes to the province's Vulnerable Person's and Home Care acts to end the suffering he says he endures while he tries to get more home-care hours. 2:13

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About the Author

Riley Laychuk

CBC Manitoba reporter

Riley Laychuk is CBC's reporter based in Brandon, covering rural Manitoba. Share your story ideas, tips and feedback: riley.laychuk@cbc.ca.