By: Sue-Ann Levy
Marcy White’s soon to be 14-year-old son, Jacob Trossman, can’t move or talk and relies on a feeding tube to eat.
Trossman, who has suffered since birth from a rare neurological, degenerative disease similar to the one portrayed in the movie Lorenzo’s Oil, needs his airway deeply suctioned many times a day to ensure he can breathe properly.
White said after Jacob spent 236 days in Sick Kid’s hospital last year and his health deteriorated considerably, the family was allotted 24-hour nursing care through the Toronto Central CCAC in August 2015.
Since then, some 29 different nurses have come through their north Toronto home. Many of them have been “poorly trained and incompetent,” White said during a recent interview.
She added that for every mistake that occurs, there appears to be no consequences and contends the CCAC repeatedly tells her the “system is not set up for 24/7 home nursing.”
She cited such problems as nurses showing up at the last minute for a shift; a nurse forgetting to put up the railings of Jacob’s hospital bed, which caused him to fall out; another feeding him her food in his mouth with her finger (even though he’s been tube fed since birth) and another who fell asleep on a day shift because she took too much codeine.
“We still don’t have a stable and consistent schedule and Jake has been home (from hospital) 8 1/2 months,” she said.
White’s husband, Andrew Trossman, said that despite the considerable off-loading of hospital services to the community, the system is just “not designed” for people who are as sick as their son Jacob.
Nolan Reeds, spokesman for the Ontario Association of Community Care Access Centres (OACCACs), insisted that parents of kids with medically complex needs are the “primary caregivers,” and that the CCACs “regularly train” parents on how to suction their kids and administer medications (the families I interviewed said it’s more often than not the other way around).
He added that performance issues related to employees of nursing agencies are the responsibility of those agencies.
Representatives of two nursing agencies regularly contracted by the Toronto Central CCAC — VHA and Saint Elizabeth — insisted their nurses have not only had experience working with children (often in a paediatric hospital setting), but that ongoing training and support in advanced skills is also available to them.
Both agencies also indicated they have formal complaint processes.
Mairead Cavanagh, a single mom of two boys, has had to fight with Central CCAC to even get 88 hours a week of nightly nursing and personal support worker care for her seven-year-old, Maleek Lubambula, who suffers from a rare congenital syndrome which causes respiratory, airway, cardiac, GI and hearing issues.
Maleek breathes through a trachea tube and also requires a feeding tube and a Picc line to to deal with his severe bowel problems.
Cavanagh said the challenge has been finding a nurse “trained to do” all the things Maleek needs. She said there are times when she has been “horrified” by mistakes that were made and was once woken up by the sound of a nurse snoring.
“I had to wake her up … she was snuggled up on some toys,” she said.
She said her ability to “trust nurses with his care is very limited.”
Cavanagh added the issues are “across the board” — present in all agencies — and one big issue is that if these nurses were providing complex care in the hospital, they’d have a whole team of colleagues to help them. In the community, nurses have no such support.
Shae Greenfield, spokesman for health minister Eric Hoskins, said they’ve heard clearly from Ontarians that they need to take additional steps to improve the quality and consistency of care patients receive through home care.
“Our office has reached out to the OACCAC and to the CCACs to look into the specific cases that have been brought to our attention to determine how we can improve the care we deliver to these families,” he added.
Mother runs her own show
After battling Toronto Central Community Care Access Centre (CCAC) first to get nursing services and then to get well-trained nurses, Samadhi Mora Severino finally won the right in mid-February to make her own decisions for her medically fragile four-year-old son.
Every month she gets self-directed funding from the CCAC for her son, Kian Snyder, to hire and pay the nurses and personal support workers she selects herself.
She receives 230 nursing hours and 84 personal support worker hours each 30-day cycle.
For the first three years of her son’s life, Mora Severino said she was never told she was eligible for nursing services for Snyder, who suffers from severe cerebral palsy. He can’t sit, stand or walk on his own and is just starting to talk a little bit.
She had to go to Ontario’s ombudsman for help.
But she said after going through 10 nurses from the time she started getting services in January of 2015, it became clear to her there were “many nursing issues” with the agencies contracted by the CCAC to deliver care.
Mora Severino said Snyder has “profoundly severe sleep apnea” which requires him to wear a BiPap machine while sleeping to help him breathe and a nurse is needed to monitor that machine all night.
But not many of the nurses who came to her had BiPap experience.
Once Mora Severino finally got self-directed funding two months ago, she hired two nurses through ads on Kijiji and Craigslist.
She conceded that while it’s a “much better fit” for Kian, her situation would not work for every family.
Mora Severino said she’s now not only Kian’s case coordinator but head of payroll responsible for ensuring she calculates the tax, WSIB payments and vacation pay for her employees.
“It’s almost like another job on top (of what I’m doing),” added Mora Severino, who working on a Master’s degree at York University.
Asked if working with medically complex kids was beyond the scope of CCACs, Noland Reeds, spokesman for the Ontario Association of Community Care Access Centres (OACCACs) said to the contrary, they are “honoured” to work with such children.
“While there are finite limitations on how many paediatric (specialized) nurses are available in Ontario, we work with hundreds of families to successfully care for their child at home,” he said.
The ins and outs of respite care for kids with severe medical complications:
- Nursing and personal support care at home is provided through local Community Care Access Centres funded by Ministry of Health and Ministry of Children and Youth Services.
- No protocol for number of hours provided: CCAC decides what families receive based on individual care plans and sub-contracts to nursing agencies
- Ministry of Children and Youth provides enhanced respite funding of $3,500. CCAC determines eligibility and arranges services.
- Ontario CCACs says there are a limited number of specialized nurses (i.e., paediatric nurses) available.
- Saint Elizabeth has 500 nurses (RNs and RPNs) working in paediatric programs. They’re assigned to clients based on skills, experience and client/family fit.
- VHA has a dedicated team of child and family nurses. Nurses hired for the team have experience working with children, often in a paediatric hospital, go through a comprehensive orientation program and must demonstrate their field skills to a nurse mentor.