A Saint John woman whose son suffers from a rare form of epilepsy is speaking out about her ordeal as the sole caregiver of a severely disabled child while surviving on a low income.
Heather Whittaker takes care of her son Justice, 15, around the clock, while struggling to make ends meet on a fixed income from social assistance and child disability payments.
Meanwhile, conditions at her subsidized apartment have become practically unliveable due to mold and a lack of wheelchair access.
Watch the full interview here:
The NB Coalition of Persons with Disabilities is trying to raise awareness about Whittaker’s story.
The advocacy group says it’s just one example of many in a province where people with disabilities are treated as second-class citizens or worse.
“Systemic ableism is alive and well in New Brunswick,” said Shelley Petit, chair of the NB Coalition of Persons with Disabilities.
The Department of Social Development declined an interview request.
A spokesperson provided an emailed statement which said, in part, that “making sure children, youth, and families have the right support and services” is an important part of the department’s mandate.
The statement pointed to the provincial government’s Family Supports for Children with Disabilities program, which helps eligible families cover some of the “extraordinary costs” associated with caring for disabled children.
The statement added that the department is “constantly reviewing best practices and services to address systemic changes and gaps and continues to do so.”
On Tuesday, the government also announced new measures including a monthly $200 household supplement for social assistance recipients, starting in February, to help offset rising food and housing costs. The NB Common Front for Social Justice said it welcomed any relief effort but called on the province to raise social assistance rates above the poverty line.
For the Whittaker family, support from the provincial government has fallen short.
Heather Whittaker’s son suffers from multiple overlapping conditions, including Dravet syndrome, a type of epilepsy involving developmental delays and frequent, life-threatening seizures.
His delayed cognitive development means that he’s “non-verbal,” meaning he can’t communicate through speech.
A pediatric neurologist said in an August 2023 letter that Justice requires constant one-on-one care within the home to ensure his safety and wellbeing. Outside the home, he requires an even higher level of support.
Whittaker described a nightmare scenario in which she has struggled to get help from the Department of Social Development, while constantly fearing for her son’s life.
“I’m constantly in an anxiety state because I’m just waiting for a seizure to happen.”
To survive, Whittaker depends on social assistance from the province, along with the federal child disability benefit and a $355 GST rebate that comes every three months.
Whittaker said her income amounts to about $1,800 a month. New Brunswick’s social assistance rates are the lowest in Canada.
A housing subsidy from the province means only $57 per month goes to rent, but when a broken pipe flooded her apartment, moldy patches spread on the walls and floor.
The NB Coalition of Persons with Disabilities has helped push the authorities to address the issue. The Deputy Minister of Housing has been involved and says a solution is imminent, according to Petit.
In the meantime, Whittaker said, the mold affects her son’s breathing and may even trigger seizures.
“Any kind of stress from anxiety or illness can provoke uncontrollable or unpredictable seizures, which are-life threatening,” she said.
She was already looking for a new apartment because of Justice’s mobility problems.
“My son’s medical conditions regressed and now he needs a wheelchair,” she said. “He can’t walk long distances and he can’t walk stairs, and we are in the basement.”
The apartment is accessed by a flight of six stairs inside the building and additional stairs outside.
Justice requires wheelchair accessible accommodations, according to a 2018 letter from a pediatric neurologist.
Housing and services elusive
Their rent subsidy is portable – meaning it isn’t attached to the moldy, inaccessible unit – but New Brunswick’s rental market is marked by a declining supply of affordable housing.
The portable rent subsidy also comes with stigma.
“The biggest thing is nobody wants to deal with NB Housing,” Whittaker said.
“I’ve searched high and low from Moncton to Fredericton to Saint John. I’m on waiting lists in all three cities and nobody wants to deal with NB Housing.”
The role of 24-hour caregiver also isolates Whittaker from the outside world.
“I have to do everything all on my own,” she said. “If I want to go to work, if I want to go to school, if I want to do anything other than just attend to my son’s needs, I would need a break.”
But Whittaker has encountered roadblocks accessing respite care, a service that provides temporary relief to caregivers.
The Department of Social Development agreed to reimburse her for 20 hours per week of respite care, at $20 per hour.
She found that respite care providers were asking for around $30 per hour, meaning she was on the hook for the $10 per hour difference, an amount that quickly exceeded her limited resources on social assistance.
Reimbursements from the province for those out-of-pocket expenses were irregular, she said. Some caregivers quit because she couldn’t pay them promptly.
The province eventually agreed to cover the full $30 per hour amount, and to pay the service providers directly.
So far nobody has agreed to take the job.
Breaking the isolation
Whittaker said she’s going public because she wants the general public to understand the difficulties faced by parents of terminally ill or disabled children.
And she wants people in situations like hers to know they’re not alone.
“From experience it’s a very lonely world in isolation, feeling like the world is against you.”
This article was updated on Nov. 23, 2023 with information about a new supplement for people on social assistance from the provincial government, with a response from the NB Common Front for Social Justice.
David Gordon Koch is a journalist with the NB Media Co-op. This reporting has been made possible in part by the Government of Canada, administered by the Canadian Association of Community Television Stations and Users (CACTUS).