Emma Miles worries about her brother Ethan, who is non-verbal and needs constant care. She is afraid her income won’t be enough to get him the care and resources he needs once he ages out of school. Her worst fear is that he will be abused in a care home.
Looking after Ethan isn’t easy, and he is entirely dependent on his family to advocate for him. It has been a full-time job for Miles, and respite care can be impossible to get due to the COVID-19 pandemic exacerbating old problems, and creating new ones.
“His world doesn’t function without us,” says Miles.
Ethan spent the first months of his life in the neonatal intensive care unit after experiencing seizures shortly after birth. Once he was stabilized and sent home, he underwent many surgeries as a child.
“Lots of time in hospitals, which was hard for him,” says Miles.
By his fourth birthday doctors gave Ethan an Autism diagnosis to secure funding for school. He would need a special education assistant by his side, but doctors wanted his family to keep investigating. They speculated there was another genetic condition involved.
“We’ve done genetic panels,” says Miles. “We’ve done brain scans, MRIs, CTs.”
Ethan tested for a new genetic condition, KCNQ2, during high school and was diagnosed. But, like with Autism, this genetic condition presents in different ways in different children.
Doctors are still unsure what behaviours arise from which diagnoses or whether Ethan is even Autistic. Regardless of diagnosis, it was clear Ethan needed constant lifelong care.
Throughout the diagnosis search, Ethan went through various therapies in the hopes he would learn how to talk. His communication skills increased, but he was still unable to speak. The family, who were present for every session, noticed how Ethan treated his therapy as a social opportunity.
Ethan uses certain words, gestures, and prompts on an iPad application to communicate.
The family worked tirelessly with doctors, behavioural interventionists, and therapists to help Ethan learn — but there was a limit.
“We switched our modes from pushing to get farther and more to deepen his knowledge of what he is doing,” says Miles.
Both Miles’s parents were working full-time jobs during this time. Her father would work night shifts and take care of Ethan during the day, while her mother was at work. He would sleep only for a couple of hours in the evening before his shift started.
They were always desperate for respite care. But when Ethan was finally approved for it, they had a hard time finding the right person for the job.
The family had to be comfortable with the worker because of his dependency on them.
“He can’t speak, so we don’t know what happens when we are not there,” says Miles.
Complicating their respite search was the baseline government funding.
“There are some workers who won’t do it for that amount,” Miles says. “We are pulling from our pockets to top up the respite workers.”
Miles doesn’t blame the workers for demanding better pay. “The services they provide are invaluable to families,” she says.
The family was lucky when their special education assistant agreed to be their respite worker.
“When my parents want to have a night out, they don’t have to rely on me,” says Miles. “I love my brother, but having a special needs sibling makes you grow up remarkably fast.”
Miles was often in charge of supervising Ethan when she was a child. And while she is grateful for the lessons in maturity, there is a feeling of a lost childhood. “To be a third parent to a child when you are already ten is not normal,” she says.
Miles has recently developed anxiety and sought therapy for herself. She struggles with a fear of the future — for both herself and Ethan.
She worries about Ethan’s health, and where he will go once he ages out of school. She fears not making enough money to get him the care and resources he needs. Her worst nightmare is her brother being abused in a care home.
Throughout her childhood, Miles relied on the support of friends. She knew her parents didn’t have the time or energy for typical interactions. When Miles got home from school, her mother was already exhausted.
“I never wanted to add anything onto that.”
The lack of respite care puts a strain on the entire house. “We know it’s hard on the child,” she says. “It’s also hard for everybody around them.”
The COVID-19 pandemic has made respite care disappear entirely.
“My mom spent six months with Ethan, almost every day,” she says. “Completely taking care of him with no rest.”
“Ethan is a full-time job, and most of the time she was also working her full-time job.”
Respite care is designed to reduce the stress on families, and let them do activities other than caregiving. It also gives the child a chance to socialize with someone outside their household.
In 2009, Simon Fraser University graduate student Frances Simpson wrote a thesis on access to respite care for parents who have children with disabilities in British Columbia. The report found there were problems with long waitlists and a shortage of qualified long-term respite workers. Funding tied to income results in financial strain on families and eligibility criteria was an issue because it is based on diagnosis rather than functionality.
Children with disabilities and their families are entitled to this support, as it falls under their citizenship rights in the Canadian Charter of Rights and Freedoms. Canada also signed on to the United Nations Conventions on the Rights of Persons with Disabilities in 2007.
Surveyed families weren’t happy with portraying their child negatively to justify the support.
In December, B.C.’s Representative for Children and Youth released a report on how families cope during the COVID-19 pandemic. Left Out: Children and youth with special needs during the pandemic shed light on a “crisis decades in the making.”
It explains how the pandemic broke an already fragile and fractured system and how children and youth with special needs and their families have never received adequate or equitable support.
The hardest-hit families are those who live in poverty. These families are disproportionately Indigenous, racialized, new to Canada, or led by single mothers. Those in rural regions face additional obstacles as well.
Families fear having to give up their children to government care just to get the support and services they need. Special needs children in government care receive more funded services than they would in a family home.
For a long time, families with medically complex children have turned to charities to get equipment, like Variety the Children’s Charity, which had to stop taking in grant applications during the first months of the pandemic.
The report calls for a new communication strategy for families, as many were unable to contact their social worker during the first wave of the pandemic. Even if they did have contact, workers were often unaware of new information. Many turned to social media groups to find out policy and funding changes.
It also called for an extension of all pandemic-related changes until at least fall this year. Another call to action was to create a regular roundtable for those in the system to come together and address emerging needs, such as barriers to better support.
The report wants families in the system to be declared essential workers to get them the critical services they need during lockdowns. It also advised the government to funnel funding into community organizations that work with families to develop activity plans for special needs children losing school and community services.
The government must decrease the excessive paperwork required to get funding, which has been a huge frustration for families. They also need to see whether a bubble with support services can be created for families for future lockdowns.
“Families need empathy,” says Bobbi Taylor, family support coordinator for the Family Support Institute of B.C. “They need policies that are family-centred and family-focused.”
Taylor has worked with families whose child does not qualify for support and respite care but needs it.
“There are obviously a lot of undiagnosed processing disorders or kids that aren’t diagnosed just due to not meeting criteria,” she says.
The Family Support Institute is an organization created in the 1980s when families started a movement to bring their children out of institutions. It operates on a volunteer, peer-to-peer model to share lived experience expertise.
Respite care depends on a family’s specific needs. For caregivers who need a break, respite care is crucial for their mental health, but many struggle with finding care workers who can attend to a child with complex needs.
“It’s not a living working wage,” says Taylor.
“In order to get a full day, you would need four individuals at two hours a person,” she says. This does not include the travel time to each respite worker.
The current framework for government-funded respite care requires a special needs social worker and relies on a certain set of criteria.
“You need to have either the Autism diagnosis, an intellectual disability that is documented, or you’ve been approved for the At Home Program, which is a medical benefits program in B.C.,” says Taylor.
Even after being approved for respite care, there is a long waitlist. “There are some children who age out of child services before they ever see respite,” says Taylor.
“Last year, the ministry invested $6.3 million to boost respite funding by 10 per cent…allowing more than 1,300 families to come off the waitlist,” the Ministry of Children and Family Development said in a 2019 statement. More than 2,000 families are still on the waitlist.
The government invested over “$400 million a year in funding and support for children and youth with special needs and their families.”
They acknowledged the COVID-19 pandemic is difficult for families of children with support needs, with many in-person services and therapies being temporarily suspended. The ministry has tried to address these difficulties by making “policies more flexible.” For instance, families can use respite funding for housekeeping and meal prep. In September, the ministry updated its respite emergency relief support, and issued a statement which says, “Until March 31, 2021, families who receive Direct Funding/At Home Program basic respite can continue to use their respite funding in a flexible manner. Families do not need to provide a record of respite expense forms for agreements expiring before March 31, 2021.”
Additionally, “A new service-delivery framework is being developed” to better address the needs of each family. The ministry stated the new framework will be introduced in phases this year.
Miles wants an expansion of respite options and access to qualified, long-term respite workers. She also wants the government to ensure better pay and benefits for respite workers.
By sharing her mental health struggles, Miles hopes to see more support programs designed for parents and siblings of special needs children.
“I hope one day we can get there,” she says. “When one day you can see a family that is fully supported from cradle to grave.”