‘A fight’ to get support for parents
Report highlights struggles with caring for medically complex children
Imagine your child has a severe disability, is extremely medically complex, and will likely die at a young age. What do you imagine you would find most challenging about parenting your child?
Memorial University PHD candidate Amie Richards spoke with 11 parents of such medically fragile children in Newfoundland and Labrador for her master's research project, some of the findings of which she published in a report, “Treading Water: Parents of Medically Fragile Children in Newfoundland and Labrador and their Struggles
Accessing Government Supports,” released last week.
“One of the things that I would ask the parents is, ‘Tell me the best thing about parenting your child,’ and then I would ask them, ‘Tell me the worst thing about parenting your child,’ and they said the worst thing about parenting their child was trying to access government support,” Richards told Saltwire on Wednesday.
“I was talking to parents whose children are severely disabled, and extremely medically complex.
“These children are not likely to make it to adulthood. They are very medically fragile, and to know the kinds of things that they have to go through — lots of medical appointments, lots of home care, surgeries, how unstable the very life of their child is, that their child could die tomorrow — and to hear that they considered the worst thing that they were going through was trying to access support from the government was mind-blowing,” Richards said.
LOW WAGES FOR RESPITE WORKERS
Richards’ own daughter, Minxie Tuttle, was medically complex. She had chronic lung disease and cerebral palsy.
She was hospitalized about 30 times during her life before she died in July 2020 at age 11.
Knowing the struggles of families of medically complex children, Richards continues to research and to advocate for ways to make their lives easier.
She found that accessing government support under the provincial government’s Special Child Welfare Allowance (SCWA) Program is described by parents as “a fight” — one that she learned all too well herself — and that parents struggle to find and retain respite workers due to workers’ low wages, hours and job security, all of which are affected by government policies.
‘WE’VE BEEN TOLD WE SHOULD SEPARATE’
Some of the comments Richards heard from parents include:
• ”We’ve been told we should separate. I would receive better support as a single mom.”
• ”I asked how I was supposed to stay up all night and all day; they said, ‘You have to.’”
• ”They look at our income instead of looking at her needs.”
• ”I had seven medical professionals write letters for these respite hours. SCWA still turned it down.”
• ”They said this is normal parenting stuff, so I shouldn’t need respite help for it.”
Richards’ report says parents feel the number of respite hours they receive is inadequate. Richards gave an example of one family who requested additional respite hours, and were told it was excessive and that if the child needed such care the parents should consider a residential care facility instead.
“These children are loved by their parents,” Richards said earlier in her report, when introducing her research.
“The parents do not consider these children as a burden they have to provide for; they are ferociously loved and wanted.”
NEEDS VERSUS INCOME
Jeanine Mcdonald’s 14-yearold daughter, Claire, has severe epilepsy, cerebral palsy, autism and PTSD, among other medical conditions.
Mcdonald had to quit working to care for Claire.
“What we do for our children goes far beyond parenting,” Mcdonald told Saltwire on Wednesday.
“We’re no longer parents anymore as much as we are nurses, and doctors, and occupational therapists, and physiotherapists.”
Mcdonald said she’s lucky to have some respite care for her daughter, but qualifying for such care should be based on the needs of the child, rather than the family’s income.
She said trying to access government support can feel like you’re being punished.
“You end up feeling like you’re begging,” she said.
CONCERNS ABOUT CHANGES
Richards said she released her report last week because she heard the provincial government was making changes to the SCWA Program, and she worried changes might be made that will make it more difficult for families.
“These changes are being implemented without input from the people who are going to be affected by the changes,” Richards said.
Both Mcdonald and Richards told Saltwire they would like to see an advisory board created, with significant representation from parents and caregivers.
It’s a recommendation that was also made in October by citizens’ representative Bradley Moss in his report, “By a Thread: A Report about the Challenges of Parents and Caregivers of Medically Complex Children”.
WORKING TO IMPLEMENT RECOMMENDATIONS
Moss made 12 recommendations in his report, and the government accepted all of them.
He told Saltwire on Wednesday that after the report was released, his office requested that the government appoint a senior official in the Department of Health and Community Services to meet with them every 90 days to provide an update on progress. He said that request was quickly met.
“These meetings have been productive, and started off with them asking what we felt were the most important and achievable recommendations so they could get to work on those while the longer-term ones took shape,” Moss said.
“In the short term we felt the internet portal for available services and establishment of the ministerial advisory committee would be most helpful.
“Government has also been proactive by engaging this official with parents and caregivers for individual and collective concerns. Meetings have already started there as well,” he said.
Moss said the advisory committee has not yet been formed, but there are people interested in joining it.
On Wednesday, Saltwire requested comment from Health Minister Tom Osborne, and asked his department for information. They were unable to meet the Wednesday print deadline, but Saltwire will update this story once it obtains an interview or information.