‘The gaps become chasms’

Sequilla Stubbs needs supportive housing. All the province has offered is a hospital bed.

By Tori Marlan
December 30, 2020

‘The gaps become chasms’

Sequilla Stubbs needs supportive housing. All the province has offered is a hospital bed.

By Tori Marlan
Dec 30, 2020
Sequilla Stubbs speaks to her mother from the hospital. Photo: Jimmy Thomson / Capital Daily

‘The gaps become chasms’

Sequilla Stubbs needs supportive housing. All the province has offered is a hospital bed.

By Tori Marlan
December 30, 2020
‘The gaps become chasms’
Sequilla Stubbs speaks to her mother from the hospital. Photo: Jimmy Thomson / Capital Daily

After calling Vancouver Island’s crisis hotline on November 27, 19-year-old Sequilla Stubbs went to the emergency room at Royal Jubilee Hospital. The voice in her head, “Mr. D.,” had grown louder than ever. It was threatening to hurt her 13-year-old brother and telling her to kill herself.

Hospital staff led her to an open area with reclining chairs in the psychiatric emergency services unit, an area she’d come to think of as a “bright jail cell.” The staff took away her phone and the stuffed giraffe that made it easier for her to express difficult feelings. By talking through the giraffe, Sequilla finally had been able to reveal to her mother what Mr. D. was saying: everything would be better if she were dead. 

Sequilla remained in a reclining chair for the next five days under constant observation, waiting for a room on the main psychiatric unit. At night, she’d extend the chair so she could lie down, but her legs dangled far over the edge, making sleep difficult.  

Sequilla was no stranger to hospitals. She’d been in and out of them in the past year and a half, her longest admission lasting six months. As someone with Type 1 diabetes, mental-health issues, developmental delays, and an intellectual disability, she was prone to confounding doctors and the various agencies that her mother, her fiercest advocate, enlisted for help. New diagnoses, it seemed, were always coming, making Sequilla feel like “an unsolvable Rubik’s Cube.”

More than a month later, she is still in the hospital, on the main psychiatric unit, burning through Netflix shows, making paint-by-numbers art, studying for college when possible, and itching to get out.

But Sequilla’s mother, Jennifer Stubbs, fears that her daughter is in for another long haul. Last December, during the six-month hospitalization, a psychiatrist determined that Sequilla’s complex-care needs required that she be released to a group home. The lack of options in BC extended her time in the hospital by almost four months—until the pandemic forced her discharge, jolting her out of a locked medical environment and back to her parents.  

“The system hasn’t come to meet her,” Stubbs says. No one the family has turned to for help in the last year—not from VIHA, the Ministry of Child and Family Development, or Community Living BC—has been able to find a suitable place for her. “Every agency says she’s not a fit for them,” Stubbs says. “There’s nowhere for her to go.” 

* * *

Young people with multiple and complex needs in British Columbia often find themselves in Sequilla’s predicament: in urgent need of publicly funded services that come too late or not at all.  As a result their needs are often met by expensive systems—like hospital emergency wards—intended to deal with acute, not chronic, conditions.

The Ministry of Children and Family Development (MCFD) funds and provides services for youth up to 19 with neurological conditions, chronic health concerns, and disabilities though its Children & Youth with Special Needs (CYSN) program. But access to services is based on diagnoses rather than actual needs, and care providers tend to operate in disciplinary silos. 

The system “leaves uncounted thousands of children and youth with special needs with no services whatsoever, solely because they don’t fit into the right boxes for eligibility,” according to a recent report by the BC Office of the Representative of Children and Youth (RCY).

Families the Office consulted for the report observed that the ministry’s special needs program’s goal often seems to be “to screen children out of services ... rather than help them reach their potential.” 

While the pandemic has exacerbated the barriers to services, it’s well known to people who work in the system that many of the barriers predate COVID-19. The former minister of children and family development, Katrine Conroy, acknowledged last June that the system needed an overhaul. The framework for offering supports to children and youth with special needs wasn’t working, Conroy told the CBC, adding, “We have to change the way we provide services.” The current minister, Mitzi Dean, agrees, and early efforts to do so are underway, according to a ministry spokesperson. A target date for implementing a new framework has yet to be announced, however, and at this point, the ministry is still in the planning stages of setting up an advisory council to solicit input from affected families.  

On the day Ministry of Children and Family Development clients turn 19, they lose the ministry’s support and must apply for services through Community Living BC. For people with complex needs, it’s rarely a smooth transition, says Shelley Cook, a postdoctoral Health System Impact Fellow at UBC. “The gaps between systems become chasms for individuals like this.” 

* * *

It was clear to Stubbs early on that keeping Sequilla safe, and alive, would require extraordinary effort. Sequilla was diagnosed with Type 1 diabetes when she was two-and-a-half years old, after developing a life-threatening complication of the disease that caused swelling in her brain. “They told me she may have suffered brain damage, and we [wouldn’t] know until she gets older and see the impacts,” Stubbs recalls.

 Not long after the diagnosis, Stubbs and Sequilla’s father separated. For the next couple of years—before she met her husband, Matt—Stubbs learned how to be a single mother to a toddler with chronic health needs, punctuating her workdays with trips to Sequilla’s daycare to administer insulin injections. 

As Sequilla grew, Stubbs saw clear markers that something wasn’t quite right. Sequilla had speech delays and difficulty printing but was never flagged for diagnostic tests.

Sequilla had behavioural issues too. She had “big emotions,” Stubbs says, and would melt down when she felt overwhelmed, retreating inward rather than lashing out. Stubbs recalls being summoned to pick up her daughter from school one day after Sequilla pulled her hood over her head on the playground, shaking and refusing to speak.

After a meltdown on a camping trip when Sequilla was 11, Stubbs implored her to articulate what she was experiencing. “It’s jumble brain,” came the reply. Stubbs didn’t understand what Sequilla meant, but she devoted that year to finding out. The diagnoses rolled in: ADHD, learning disabilities in math and writing, anxiety, developmental coordination disorder, and sensory processing disorder. 

Life got easier for Sequilla in middle school, after Stubbs enrolled her in Discovery School, a private school up to Grade 12 for children with learning disabilities. She thrived, finding friends and a community that nurtured her. In high school she made the honour roll and took a part-time job at Thrifty Foods. Outside of school, she took voice lessons and acted in musical theatre productions. She also capably advocated for herself and others with diabetes. When she was 15, she travelled to Ottawa as one of 50 youth advocates to participate in Rick Hansen’s first national youth summit on disability, pledging to make Canada more accessible through diabetes education and fundraising. A couple of years later, after a city bus driver insisted she stop eating a snack after her blood sugar dropped, Sequilla reported the incident to BC Transit and then went on the radio to talk about it, eventually winning an apology from the agency. In her senior year, she applied to—and was accepted by—Camosun College, setting her sights on the Community, Child & Family Studies department in the hope of one day becoming a child life specialist and making the hospital less scary for children.

Sequilla was doing so well that at the suggestion of Victoria General Hospital’s pediatric diabetes clinic, which Sequilla had been attending as an outpatient since early childhood, Stubbs agreed to disengage from Sequilla’s diabetes management and let Sequilla handle it herself. 

But as Sequilla approached graduation and the prospect of more independence, she began to regress. Meltdowns occurred more frequently. She would curl up on the floor, clutching a stuffed animal, and speak in a childlike voice, saying, “Me no talk” and “I don’t want to adult.” Most distressingly, she started having trouble managing her insulin intake, which she’d done successfully at that point for two years. 

In May 2019, while Stubbs and her husband were on their first-ever vacation, Sequilla overdosed on her insulin by more than two-and-a-half times her normal dosage.

That summer, it seemed to Stubbs that a day rarely passed without an emergency. The alarm she’d set up on an app monitoring Sequilla’s blood sugar levels would suddenly go off, blaring the disconcerting sounds of a baby’s wails—a decidedly annoying alarm tone, but one she’d selected to differentiate from the dings and buzzes associated with mundane notifications. Several times the wails pierced the quiet of her office, and Stubbs raced home to find Sequilla unresponsive. Only with slaps and by forcing sugar into her mouth could Stubbs revive her.

Wondering if Sequilla might be purposely harming herself, Stubbs raised the prospect with Sequilla’s GP, and, later, a psychiatrist, but the idea didn’t gain traction with her care providers, and the focus of Sequilla’s treatment remained behavioural and medical. 

The days were a revolving door of trips to the ER: For blood sugar levels that were too high or too low. For catatonic panic attacks. And for non-epileptic seizures—a fierce and sometimes prolonged shaking that doctors said had no medical origin.

Hovering in the background of the immediate trauma was Stubbs’s persistent and growing concern about what would become of Sequilla as she moved into adulthood. Would she ever be able to live independently? Stubbs now had her doubts.

The concern only grew after Stubbs learned about Mr. D. 

In early September 2019, Sequilla’s blood sugars dropped rapidly during a day pass from one of her hospital admissions. Stubbs recalls rushing back to the hospital, arriving at the ER as Sequilla was “drifting into unconsciousness.”  

A nurse suggested that Stubbs search Sequilla’s belongings, and after a syringe with insulin turned up in her pencil case, Stubbs scoured Sequilla’s bedroom, finding thousands of units of stockpiled insulin and syringes, hidden everywhere she looked—even inside a teddy bear.  

Sequilla finally admitted that she had been manipulating her blood sugar levels, by dialing up her insulin pen or putting sugar in her water bottle or eating too much or too little. And she revealed that she had done it at the direction of Mr. D., who was also demanding that she poke her brother with insulin. To spare him, she said, she'd had to turn the needle on herself 

The pediatric mental-health team at Victoria General Hospital developed a safety plan for Sequilla before she was discharged. It included securing Sequilla’s insulin in an outbuilding and instructing her to think of her level of crisis as a traffic light and to say “red” whenever Mr. D. was present. “They recommended things but there was no follow up,” Stubbs says. “There was no family education, there was no outside support for Sequilla, there was no counselling provided in-community.” The family did receive a referral to the Integrated Mobile Crisis Response Team, which could be dispatched to their house in a crisis. “We spent the whole week with crisis and traffic lights and our son hiding in his bedroom,” Stubbs recalls. “We felt like prisoners. It was brutal.”

Twelve days after Sequilla was sent home, Stubbs and her husband risked a trip to the grocery store. While they were gone, Sequilla used a grabber claw to break into the locked cabinet containing keys to the outbuilding. After letting herself in, she emptied a vial of long-lasting insulin into her stomach and arms.

At the hospital, as doctors stabilized her blood sugar levels, the prospect of her independence—and questions about how to keep her safe—hit Stubbs with a new urgency.  

But it wasn’t an urgency that Stubbs thought the doctors shared. “They kept telling me they were going to discharge her,” she says. “In order to keep her in hospital, I had to do something I never imagined I would do.” 

Terrified and desperate, Stubbs picked up the phone and reported herself to the Ministry of Children and Family Development’s Child Protection Services: “I said, ‘I can’t keep both of my children safe in my home.’”

Sequilla is currently back in Royal Jubilee Hospital. Photo: Jimmy Thomson / Capital Daily

Years before, not long after Stubbs and Sequilla’s father had separated, Stubbs had sought help from MCFD through its Children & Youth With Special Needs program. Part of that program’s stated mission is to assist families “in their role as caregivers,” and as a single mother of a toddler with a chronic health issue, she thought she’d be eligible for respite funding through the At Home program. Families in the program can receive $256 per month for specialized support workers—an amount that has increased by just $23 since 1989. During that period a dollar has lost about half its value to inflation.

Sequilla was deemed too high functioning for the program.

Now, after Stubbs had reported herself to the ministry, a child protection social worker contacted the hospital social worker and made it clear that Sequilla couldn’t be released to her home.  

Sequilla remained in the hospital through the fall of 2019 and winter of 2020, undergoing a battery of tests. A head scan showed calcification on her brain stem—a worrying indication that Sequilla could have a rare genetic mutation or that she’d suffered brain damage as a toddler from diabetic ketoacidosis. A neuropsychological exam showed a significant decline in Sequilla’s intellectual functioning when compared to an IQ test she’d taken three years prior. The new score placed her in the moderately impaired range for general intellectual functioning. On an adaptive functioning test, which evaluates basic life skills, she scored below the first percentile. The combination of her results designated her as someone with an intellectual disability, making her eligible for Community Living BC (CLBC) services once she turned 19. But the designation excluded her from all mainstream mental-health supports and programming. She immediately lost access to the early psychosis intervention program she’d begun through the Eric Martin Pavillion.   

Community Living BC advises youth who will be aging out of MCFD-funded services to plan early for the transition. Facilitators will meet with prospective clients as young as 16 and their families, according to a CLBC spokesperson, “to review eligibility documentation, collect information, and plan collaboratively” well before their 19th birthday. In November 2019, CLBC assigned a facilitator to Sequilla.

At the time, she was on the psychiatric unit at Royal Jubilee Hospital, cleared for discharge but stuck waiting for an appropriate placement in the community. The hospital psychiatrist told her care team that an appropriate placement meant a group home with 24-hour staffing.  

“And then the war started between VIHA [Vancouver Island Health Authority], MCFD, and CLBC,” Stubbs says, betraying the word-soup of acronyms she has had to keep straight all these years. “CLBC would say we won’t have housing till she’s 19”—which was still seven months away—“and MCFD would say we don’t have any housing, and VIHA would say she’d be too vulnerable in our mental health housing for youth.” 

Because it’s often such a struggle for people with multiple and complex needs to obtain services, even with advance planning, whole agencies and departments, including the Office of the Representative for Children and Youth (RCY), exist to advocate for them as they transition from pediatric to adult services and to help them navigate the various systems.

Stubbs enlisted advocates from RCY and Community Living Victoria to work with Sequilla. The people involved in Sequilla’s case ballooned and included representatives from Developmental Disability Mental Health Team and the inter-ministerial Office of the Advocate for Service Quality. 

They began to hold regular case conferences, and sometimes a dozen people showed up—but the attention to the case was a mixed blessing. “When you get a group that size, things tend to go round and round and you just walk away going, ‘We've really accomplished nothing,’” says Justine Dooley, Sequilla’s Community Living Victoria advocate. “My motto is, ‘Don't tell me what you can't do, I want to know what you can do to help.’”

But nobody seemed to be able to do anything when it came to finding Sequilla housing. She wasn’t a good fit for a regular foster home or a shared housing situation; she was too high functioning for locked medical facilities; and her medical needs were too complex for mental-health facilities. 

Jennifer Charlesworth, BC’s Representative for Children and Youth, can’t speak to Sequilla’s specific experience, but she says she’s aware of similar situations. “It’s heartbreaking and disappointing, but it’s also not an outlier case.” 

It’s also a familiar scenario to those who research the system. “People with the most complex overlapping needs are the ones at most risk of not getting the services that they need,” says Shelley Cook, the postdoctoral Health System Impact Fellow at UBC.

After a couple of months, MCFD widened its search to Vancouver and the mainland but found no options for Sequilla there either.

The only solution the ministry offered to the family was a nonstarter, Stubbs says: “One of the social workers actually suggested that instead we bring her home and put our son in care.”

(An MCFD spokesperson said the department could not comment on specific cases due to privacy issues.) 

Community Living BC also came up empty. Although it has contracts with 59 service providers on Vancouver Island that operate “approximately 116” staffed residential homes, a facilitator reviewing vacancies told Sequilla’s team in an email in March, “At this time, we do not have an available residential option that has both the medical and mental health experience.” 

Then the pandemic hit. Doctors urged Stubbs to bring Sequilla home for her own safety, as her diabetes put her at high risk of complications from the coronavirus. Stubbs agreed on the condition that the search for supportive housing would continue and that the family would receive in-home medical and mental-health supports in the form of overnight awake staff and respite care. She needed to know that while she and her husband slept, Sequilla wouldn’t have an opportunity to harm herself or her brother. They also needed a backup in the house from time to time, so they could be attentive to their other child. Stubbs says she was given assurances that the support services would follow. Although an RJH community liaison worker did make referrals for the services as promised, the health unit declined to provide them because Sequilla wasn’t yet 19. 

Stubbs again turned to MCFD. One of Sequilla’s advocates sent an urgent email to the ministry, warning that Stubbs and her husband “will not be able to continue to ensure [Sequilla’s] safety without an adequate level of support.” 

The ministry signed off on funding for respite care, but in the early days of the pandemic many in-person services were suspended. The help that Stubbs needed wasn’t available. The funds, however, did allow her to hire a private support worker the family knew for a couple of hours of respite on Saturdays. A few months later, on the day Sequilla turned 19, the funding stopped. Stubbs says a three-month gap occurred before Community Living BC stepped in with its own.

After BC Housing added Sequilla to its supportive housing registry, VIHA referred her to a small mental-health group home for young adults in Victoria called Greenridge Place. It was the only referral. Greenridge Place, however, rejected it on the grounds that its staffing level for nurses was insufficient for Sequilla’s medical needs. An alternate option VIHA looked into had no vacancy and a long waitlist. Although Sequilla’s advocates at various times floated the idea of CLBC creating resources, and of bringing in supports and services to supplement what was available at the staffed residences, nothing concrete was ever proposed, Stubbs says. 

 Meanwhile, Mr. D’s voice was getting louder.

“Honestly, the writing was on the wall,” says Dooley, Sequilla’s Community Living Victoria advocate. Without a living environment that was equipped to meet Sequilla’s many complex needs, Dooley says, “it was inevitable she was going to end up back in hospital.” 

* * *

On November 27, several hours after Sequilla called the crisis line and left for the hospital feeling suicidal, a fire broke out in one of the suites of the character house in Fernwood that the Stubbs family had lived in for about 15 years. The family evacuated to their car while firefighters put out the flames. 

The fire largely spared their own unit, but concerns about the house’s air quality and the need for a structural assessment made it uninhabitable. 

The family gathered a few of their belongings and spent the night at a friend’s. The following day they checked into a hotel, resigned to the idea that they might be there for a while.

Amid the tumult of her family’s displacement, a comforting thought occurred to Stubbs: the fire was a blessing in disguise.

The pandemic wasn’t over. Coronavirus cases were again on the rise. But this time, there was no home to send Sequilla back to. The province would have to find her housing.

But as the days turned into weeks, and the weeks became a month, Stubbs again began to feel that the family had been abandoned. 

Doctors were hard at work, trying to determine the root of Sequilla’s psychosis. Stubbs was told if the root cause turned out to be metabolic rather than genetic—a distinction she didn’t fully understand—it would disqualify Sequilla for mental health housing

For her part, Sequilla tried to remain optimistic. “I’m hoping to get into a group home that can deal with mental health and also my diabetes,” she said recently. Even if the fire hadn’t occurred, that’s what she’d want. She knew that her own home wasn’t a good place for her. “Although my parents are doing the best they can,” she said, her needs were “above their heads.” But the uncertainty of her predicament was weighing on her: “It sort of feels like you're stuck on a deserted island, and you don't know when help is going to come to get you.” 

Stubbs worried that help, if and when it arrived, might turn out to be a compromise rather than an environment that would nurture her daughter. Although CLBC now seemed to recognize Sequilla as a high priority and had put in a new emergency application for Sequilla at a group home, Stubbs was worried about its back-up plan. “CLBC is considering sending her to a high-needs medical home where she will live with nonverbal people because there’s no appropriate housing,” Stubbs said one evening in December.

It was starting to feel like last year on repeat. Sequilla’s complexity confounding an inflexible system. Sequilla undergoing another battery of tests. Sequilla spending another Christmas in the hospital. 

“This is a human being with high potential and disabilities,” Stubbs said. “It’s devastating to me that this is all our province has to offer.”

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