Parents of Kids with Complex Needs Are at the Breaking Point

Becky Armstrong and her husband haven’t slept more than six hours a night since the province effectively shut down on March 17.

Armstrong's 15-year-old daughter, Meagan Mitchell, has a rare genetic condition that leaves her susceptible to lung, kidney and urinary tract infections. It also left her profoundly deaf, unable to speak, walk or eat without a feeding tube.

Before the pandemic Armstrong was home with her daughter during the day. But the province’s At-Home program — one of a suite of programs under Children and Youth with Special Needs services — provided funding that let her hire an education assistant to visit twice a week. Mitchell also stayed one night a month at a respite house, giving both parents a break.

But since the province declared a public health emergency all the respite services were stopped by Armstrong because of the extreme risk COVID-19 posed to Meagan’s health.

For the last 11 weeks Armstrong and her husband, who works days, have been caring for Mitchell without help.

“It’s wearing on the mental side and body side because there is no real break,” said Armstrong, adding she and her husband aren’t in bed until midnight or 1 a.m. and up every day at 7 a.m.

“That’s seven days a week, all month long. And that’s four feeds a day, and medications, diaper changes and other care she requires.”

Parents across the province are reporting similar problems, and saying the government is not doing enough to help.

On April 8, three weeks after the province declared the emergency, the Ministry of Children and Family Development acknowledged families of children with complex mental, physical, emotional and development needs were struggling.

The government announced a $225 monthly payment to families of children with complex needs to pay for supports or services to alleviate their stress. The program runs from April to June.

In an email to The Tyee, a Children and Family Development Ministry spokesperson said families eligible for Children and Youth with Special Needs support services prior to the pandemic are eligible for emergency funds.

The ministry also relaxed requirements that birth parents make monthly payments to support their kids in special needs or voluntary government care. It made it easier to qualify for at-home medical supports; increased staffing for child development programs; increased flexibility in how ministry benefits are used; extended services by three months for youth aging out of care; and said families wouldn’t be cut off from benefits during the pandemic.

But Armstrong said she hasn’t seen any benefit from these supports. And she is not alone.

An online survey by four advocacy groups found almost 60 per cent of parents of children with complex needs hadn’t been able to access any of those pandemic supports. Less than 10 per cent — 50 families — had received the extra $225 per month. About 1,050 people responded to the survey, conducted April 23 to 25 by BCEdAccess, Inclusion BC, Family Support Institute of BC and BC Parents of Complex Kids.

Brenda Lenahan, a parent representative for BC Parents of Complex Kids, said the pandemic is creating major risks for families and children.

“Our big concern is that families are heading deeper towards poverty,” she said. “There’s always a concern, as well, that families will reach a breaking point where kids will end up in care, because families are struggling to support their kids.”

The problems the survey highlights are not new, Lenahan added. But the pandemic has intensified the issues.

“We worry about the breaking point for so many.”

“I need a break”

Stephanie Beharrell fears her family is reaching their breaking point after more than two months without in-home nursing supports for her oldest son Owen, who is nine and has a rare genetic disorder. The family receives medical and respite benefits through the At-Home program but stopped the services they paid for during the pandemic.

“Owen cannot eat, so he requires tube feeds. He has 27 medications to be given to him daily, so a nurse would come in and prepare and give his medications,” she said, adding Owen sometimes has seizures so intense he stops breathing.

“He’s also on a breathing machine at certain times of the day, so they would help clean, sterilize, and administer his breathing machine or administer oxygen if he needs it.”

A nurse also helped Owen with bathing, positional changes, school work and reinserting his dislocated joints. It’s a round-the-clock care routine that includes monitoring all of Owen’s life-saving equipment, some of which set off eight to 10 alarms every night — most of them false, but all of them needing to be checked.

The family qualifies for 91 hours of nursing support per week, funded by the ministry. But it’s been over a year since they had all 91 hours of nurse services, Beharrell says.

The family cancelled their at-home nursing services in mid-February after a nurse who had just finished a two-week quarantine following a vacation in China came to their house with respiratory illness symptoms.

After a dispute with the nursing company over its infection protocols and the fact their nurses continue to work at more than one home during the pandemic, the Beharrells have not had any at-home nursing support since Feb. 15.

More than three months later, with two other small children to take care of and her dairy-farmer husband working up to 18 hours a day, Beharrell is at the end of her rope.

“My mental health — I need a break. It’s really hard to listen to your child scream in pain and wonder, ‘is this a time you give morphine? Or is this not the time to give morphine? If you give him morphine, are you going to cause even more breathing complications for him?’” she said, speaking through her tears.

“The anguish of that is super taxing.”

In an email to The Tyee from the health and children and family development ministries, a spokesperson noted the Public Health Act order that limits professionals and support staff at care homes, assisted living, mental health facilities and stand-alone extended care hospitals to working at one site does not apply to at-home nursing supports.

“The acute, social services and other community care sectors... are not included in this order,” the emailed statement read. Employers in those sectors are prioritizing employee safety and training on infection prevention and control, as well as providing them personal protective equipment, it said.

“We recognize that it is impractical to limit these services to one site due to a limited number of resources. Precautions are being taken to protect staff and residents when these individuals come to a site.”

Too little funding, too many rules

Families receiving respite funds get anywhere from $2,800 to $3,080 annually from the ministry to hire someone to care for their children and give them a break. The rate was increased from an average of $233 to $256 per month in 2019, the first increase since the At-Home project launched in 1989. Funding was also increased to allow an additional 1,300 families to receive respite funding, a 33 per cent increase.

Beharrell has been using her respite funds to hire her mother-in-law to watch the children so she can get a shower or accompany Owen to the doctor.

“But she’s 73 and she’s tired, and she’s having to do it a lot more often, and unpaid because nursing support services can’t support us appropriately,” said Beharrell, adding the respite pay, at $314 a month, doesn’t go far.

She would like to use her nursing funding to pay for extra help, like a cleaning or laundry service, or hire someone to watch Owen for a few hours.

But Beharrell isn’t sure if that’s allowed under MCFD’s rules. And she is not the only parent confused by the ministry rules on using respite funding.

The survey found almost 70 per cent of parents who receive respite funding haven’t been able to use it during the pandemic, either because of restrictions on how it is used or safety risks to their children.

The ministry has provided a list of services respite can be used for during the pandemic, including meal prep or grocery services; home cleaning supports; hiring a family member to provide caregiver relief; counselling services; online programming for children; and “other services that support family functioning.”

But 40 per cent of survey respondents who receive respite funds say the guidelines are too vague and they want more clarity on how respite funds can currently be used.

Lenahan of BC Parents of Complex Kids said services like meal prep and house cleaning may be impossible for families with immunocompromised children.

“Basically the ministry said you can use it for meal prep or you can pay a sibling to take care of your kid,” she said. “They want you to take a break, but they’ve dictated what a break looks like, and that plays out differently for all of us, especially at this time.”

“It’s privileged of them to decide what we can do with it.”

The organizations behind the parents survey are asking for increased financial support, seeking $525 per month for April, May and June for families currently receiving or on the waitlist for supports through the At-Home program.

They also want more flexibility in how all ministry program funding can be spent during the pandemic and clear communication and guidelines from the ministry, social workers and the public health officer about funding guidelines, safety protocols and how in-person supports can be safely accessed.

They also want the province to introduce the new provincial Child Opportunity Benefit now instead of waiting until October. The benefit will provide eligible families with one child up to $1,600 annually, rising to $3,400 for families with three children.

“Even before the pandemic we have those extra financial burdens, and we also have barriers to employment because of our kids’ care,” said Lenahan. She said families should be able to save their respite funding for financial emergencies during the pandemic.

“A lot of us are on the edge of intense financial challenges.”

Minister not available to discuss parents’ concerns

The Tyee requested an interview with Katrine Conroy, children and family development minister, but she was not made available. Instead a ministry spokesperson provided an emailed statement.

“We know that all families have unique challenges, and these supports will provide some relief for families,” the statement read. “Minister Conroy and ministry staff continue to be in regular contact with families who have children with special needs and the organizations who support these families to hear about their experiences and ideas during this difficult time. We will continue to work hard to support all B.C. families.”

Lenahan says the ministry was already working on a new framework for supporting children and youth with complex needs.

The current program is inadequately funded and doesn’t centre families in decision making, she said.

“We would like to see that implementation expedited, with a focus on relieving those financial burdens for families,” said Lenahan.

But the ministry says while the new framework is a priority, they don’t want to make mistakes.

“We want to take a thoughtful approach and do not want to rush implementation during a provincial state of emergency,” the statement read.

Armstrong says her family is financially OK — for now. She was laid off from her part-time job at the Comox Valley Costco on March 18 because of Mitchell’s precarious health. Since then their health care provider has advised it won’t be safe for Armstrong to return to work.

But the family will run into financial trouble if Armstrong’s not back at work at a job that doesn’t involve interacting with the public by the end of the year.

“The best support would be the ministry coming out and saying, ‘we’re going to pay you to stay home to be a caregiver,’ instead of feeling like I have to go back to work,” she said.

Beharrell is also facing a difficult choice if she doesn’t get more support for Owen’s care soon.

“It might mean that I have to look at putting him in a home,” Beharrell said through tears, “where he would get the care — maybe not the love — but he would get the care that he would need. It’s not something I want to do. I want to keep my child at home.”