The mother of a severely disabled six-year-old boy says she’s tired of fighting the government for the care her son needs.
Nicole Daugherty, of Olds, already stays up many nights with her son, Izrahia, who suffered serious brain injuries at birth and needs 24/7 supervision.
Although born with normal intelligence, the boy has seizures, lacks fine motor skills, is vision impaired and can’t swallow.
Daugherty needs a care assistant to spend every night at her house to clear Izrahia’s airways while he’s sleeping. The mother can then get some sleep herself and be alert enough help look after him in the mornings, after school and evenings.
If his airways aren’t suctioned of secretions, Izrahia can develop a form of pneumonia, said Daugherty, who would also like help for a few hours on a weekend, “so we can spend time together as a family.”
The homemaker’s partner works as a janitor. Sanitizing her son’s medical equipment and taking care of his various medical needs leaves little time for them to read to her son, or taking him out into the community, said Daugherty.
The Central Alberta mother has had trouble hiring and keeping staff – and she said it’s because the amount provided for home support by Family Supports for Children With Disabilities (FSCD) is inadequate.
She initially received $10 per/hr. This was gradually raised – after much pushing by Daugherty over the years – to $28 per/hr, but still falls far short of the $35 per/hr a Red Deer nursing agency charges to send staff to Olds.
Daugherty said she hires inexperienced helpers and trains them herself, but has faced high turnover, as people leave for better paying jobs. The helpers only get about $23 per/hr out of the $28 after taxes and administrative expenses – and one of them is driving to Olds from Calgary.
“I’m frustrated and it’s tiring … I would really like to spend more time with my son instead of battling for what I need, (in getting help) with his cleaning and meds,” said Daugherty.
Samantha Power, press secretary for the Minister of Community and Social Services, said the department is “dedicated to ensuring families are supported in finding the right services to promote their child’s healthy development and participation in activities … regardless of where they live in the province.”
Information provided by Power states FSCD is designed to respond to a child and family’s unique needs, “so families can negotiate the type, amount and level of supports provided to them, annually, and at any time their needs change.”
On the question of whether “negotiating” can feel to some parents like fighting to get what their child needs, Power said ministry staff have been in contact with this family and are “actively working through ways to ensure they have the support they need.”