Eric Candelaria’s brother Andy died less than two days after moving into a B.C. government-funded group home in May.
Eric initially had many urgent questions about his 31-year-old brother’s death.
But his more far-reaching concerns are about the failures of Community Living BC, the provincial government agency responsible for looking after adults with developmental disabilities.
“What always surprised me from the very beginning was the extreme amount of pressure required in order to get them to do what everybody already knew needed to be done,” Eric said.
“What I’ve experienced over the last two-and-a-half years going through this process is a lot of.... extremely limited budgets,” he said. “There’s a culture inside of CLBC that incentivizes the wrong behaviour for the wrong outcomes at times.”
A spokesperson for CLBC, Randy Schmidt, said that he couldn’t comment on a specific situation, but “funding decisions are made based on disability-related needs and circumstances, which are assessed with the involvement of individuals and family members.”
The budget for CLBC is set each year in consultation with the provincial government, he said. It’s intended to cover the needs of people already receiving services and the number who are likely to be added.
“Once our annual budget is determined, staff allocate funding for new services to ensure the most urgent needs are met and as many requests for service as possible get funding.”
Andy Candelaria had cerebral palsy, a condition caused by abnormal brain development that affected his ability to control his muscles. In addition, he lived with autism, which is also related to brain development and affects how a person interacts and communicates with others.
Eric describes Andy, who was 31 when he died, as being full of energy, optimistic and able to lift up people around him.
He had high aspirations for himself and others. He wanted to be a YouTube influencer and believed he could succeed at it. For a time, he wrote the Vancouver Canucks a letter every day until they sent him a bunch of signed materials and let him visit the locker room. He sent emails to the mayor of Coquitlam telling him how to do his job better.
“Even the coaches at Special Olympics said they’d get text messages from him with advice about how to coach better,” Eric said. “He was just always involved and always felt that he could do better and the people around them could do better. He brought that energy.”
At the same time, when Andy was frustrated, he held nothing back, said Eric.
“In the same way he had no filter when he was happy and wanted to bring people up, when he was frustrated and not getting what he felt he needed, he’d be very aggressive verbally.”
Sometimes the anger was directed at the wrong people and he would say things that were unproductive, but it was part of living with limited cognition and a social disability.
“People understood where that was coming from,” Eric said.
For many years, Andy’s mother looked after him, caring for him from birth, through childhood and well into adulthood.
Then, in 2015, she was diagnosed with Alzheimer’s disease, a type of dementia affecting memory and thinking skills. She continued to care for Andy for some years after that, but soon needed more help.
Eric and Andy’s sister began looking after both Andy and their mother, an arrangement that eventually became too much.
“By 2019, the situation was becoming untenable,” said Eric. “My brother’s physical capabilities were degrading and his emotional and mental state was significantly falling because of seeing my mother’s degradation.”
In the summer of 2019, Eric began discussions with CLBC for the agency to take on Andy’s care, a matter he expected would be straightforward for someone living with both cerebral palsy and autism. He hoped the transition could be made as smoothly as possible.
“I was indicating that the police were visiting on a regular basis to the home because of his frustrations, because he was becoming more violent as a result of these frustrations,” he said.
A complaint as minor as not getting what he wanted for dinner could lead to Andy calling the police and they had been to the home nearly two dozen times over a short period.
At first, discussions with CLBC seemed promising. An official said they had opened a file and were beginning the process of finding somewhere for Andy to live where he would be looked after, Eric recalled.
But months went by, and it was obvious nothing was happening.
“They told me the process had started, but what I didn’t realize until later, until an RCMP officer with [the] mental health [unit] told me, that process was not going to move until there were larger pressures — as in my brother had nowhere to live.”
It became clear to Eric that the way forward was to have Andy admitted to the hospital under B.C.’s Mental Health Act, which allows people to be treated involuntarily for a mental health disorder. He did that in January 2020, several months after he’d sought help from CLBC.
Still, CLBC insisted it had nothing for Andy.
“Once he was in hospital, CLBC began to tell me they didn’t have any spaces,” Eric said. “They admitted that they hadn’t processed any paperwork and that it would take months and months to get him a placement of any kind.”
As the availability of acute care at the hospital ran out for Andy, Eric said, there was pressure to bring him home, including threats that he would be billed for any extra days in the hospital.
“Meanwhile, CLBC was simply looking to try and drop the whole thing,” said Eric. “They kept saying he should stay with a friend, he should stay with a family member. He should go to a homeless shelter, at one point was what they were saying. They were saying a hotel.”
Asked if that experience lines up with CLBC policy, spokesperson Schmidt said its mandate is to support individuals with developmental disabilities to achieve maximum independence in their communities.
“To do this, CLBC works with individuals and families to build as much community and family support as possible, along with funded services,” he said.
In Andy’s case, there was nowhere for him to go. A shelter was unthinkable, he had no money for a hotel and he needed care.
“Without supervision, without somebody there, he will fall and he will die,” Eric remembered thinking.
By that point Andy had already had a few serious falls requiring hospital visits and at least twice had been in a coma.
It wasn’t until March 2020 — three months after Andy’s hospitalization and nearly a year after the application to CLBC — that the agency found a home-share placement for Andy.
The program is funded by the provincial government through CLBC and delivered by local agencies that contract with some 4,000 providers to open their homes to about 4,200 people and look after them.
While CLBC had been telling Eric there were no spaces, Andy’s home-share providers had a different story.
“What surprised me was they said they were looking and banging on CLBC’s door to fill in the contract because they had an empty space.”
For months the providers had wanted to bring someone into their home, he said.
“CLBC was meanwhile saying to me they’d sent it out to everybody and had no responses in that time,” he said. “That immediately set off alarms of, ‘Hey you guys aren’t actually wanting to place.’”
Eric figured CLBC was trying to keep costs down by denying or delaying Andy’s placement.
“If you hand out the contract then you have to pay more money,” he said. “They just don’t want to spend their limited budget unless somebody’s really making it hard on them.”
CLBC’s operating budget will reach $1.36 billion this year. According to B.C. budget documents released in February, the amount for “community living and other services” has been increasing on average by about 5.5 per cent annually.
CLBC spokesperson Schmidt said the Crown corporation serves more than 25,000 people and another 1,200 individuals become eligible for service annually.
“CLBC works with the government each year to identify funding required to continue services to eligible individuals and meet service needs of new individuals,” Schmidt said. “This is based on tracking the number of CLBC-eligible youth turning 19, and the expected number of older individuals that will be registering for the first time. CLBC works within its annual budget.” (People under 19 are supported by the Ministry of Children and Family Development.)
At the same time, CLBC’s most recent service plan describes caseload growth as a “risk” to the agency’s operations and budget.
“The most significant drivers impacting CLBC’s operations continue to be the number of new people establishing eligibility and an increasing number of requests for services,” it said, attributing the growth to various factors, including general population growth, advances in health care and extended life expectancy.
CLBC presents shared living as having many benefits that can enhance the quality of life for a person with a disability, including stable relationships with providers that can last many years and offering a balance between connection and independence.
The Tyee has in recent months reported on the concerns of some home-share providers. They included Darren Guy, who cited stressful work and low pay that wasn’t keeping up with rising expenses as his main reasons for quitting after 14 years sharing his home.
And there was Karin McKenzie, who said that she’d repeatedly sought more support from CLBC and Sooke Family Resource Society in the months before Jamie Joe, a man in his mid-20s with a developmental disability, was killed in her home.
The provincial government has acknowledged the program needs to be better.
The mandate letter sent in 2021 from Social Development and Poverty Reduction Minister Nicholas Simons to CLBC’s board chair Michael Prince, a University of Victoria political science professor, tasks the agency with “working with home-sharing stakeholders to develop and implement improvements to improve the quality and sustainability of home sharing.”
From Eric Candelaria’s perspective, the failure to better support home sharing is part of a pattern of poor services for adults with developmental disabilities.
Around the same time that Andy moved into the home share, Eric sought psychiatric assistance for him from another government organization, Developmental Disabilities Mental Health Services, hoping that Andy could build some coping skills and supports as he struggled with feelings about how their mother was changing.
“That referral was outstanding until the day he died,” Eric said. “Over a year, close to a year-and-a-half, that he was sitting on that referral and DDMHS, another organization that really doesn’t have the resources, because he never got that psychiatric consult.”
A spokesperson for Fraser Health took questions but didn’t respond to them by Tyee publication time.
With CLBC, even once Andy was placed, it was an ongoing effort to get him assessed at the right level. The agency uses five categories that vary depending on the client’s needs to determine how much care they get and how much the home-share provider is paid.
Payment amounts from CLBC range from $1,000 to $4,925 a month. Clients also typically receive $716 a month in disability assistance payments to help cover their living expenses.
Initially, Andy was assessed at level three, but it quickly became clear he needed more care.
“He had several incidents in the home share regarding his physical capabilities, and after the home share had had some time with him for several months, [CLBC] agreed with me to push his care level up,” Eric said.
In the months that followed, Andy had more falls and was having difficulty walking. The skills he’d learned for falling safely were no longer working and he sustained some injuries. An occupational therapist was involved and there were concerns Andy would soon injure himself badly enough that he’d need a long recovery in a hospital.
Eric asked CLBC to raise the assessment a second time, this time to level five, but the request was refused.
“They did not want to upgrade him,” he said. “Their reasoning was that he’d already been upgraded once and they didn’t want to upgrade him again. They didn’t want to do the assessment.”
Schmidt at CLBC said care levels are set using standardized tools and processes to help make funding decisions in a consistent manner.
“This includes eligibility criteria, a guide-to-support allocation tool, which supports staff to assess level of disability related need, and a prioritization tool to assess urgency of need.”
There’s no limit on when a reassessment can be done, he said.
“An individual can request a review of their needs at anytime if there is a significant change in their circumstances.”
Schmidt said that “CLBC is committed to having positive relationships with individuals and families” and has been taking steps in recent years to support those relationships.
Those steps included giving trauma-informed practice training to staff, providing welcome workshops to families to help them understand what to expect from CLBC and providing information on the agency’s website about its funding processes, he said.
“CLBC also recently consulted with more than 500 individuals, families and others to develop its new strategic plan,” he added. “This will be launched soon with goals to make further improvements.”
Andy himself had the sense he wasn’t getting the care he needed, leading him to file complaints and building animosity between him and the home-share providers, Eric said, adding that Andy’s ways of expressing himself were often ineffectual.
“The autism really prevents him… his mental cognition is so low, he never really understood why things weren’t the way they should be,” said Eric. “He only understood things weren’t the way they should be and he would typically blame the people he was directly in contact with, which were the first home-share providers.”
Eventually the situation escalated to Andy threatening the home-share providers. The police became involved. There was a stay in the hospital after which the providers refused to take Andy back.
Another home-share provider was found to take Andy in, but the stay wouldn’t be long. “Within a few months he fell in the night and broke his shoulder,” Eric said.
By last November Andy was in the hospital for acute care and Eric continued to press CLBC to get the care level raised. This time they didn’t resist as much, he said.
“I guess they’d finally seen enough.”
The reassessment would also mean a move for Andy into a group home that would be better able to look after him. Andy was discharged from the hospital in December, which was what he wanted, but it took another five months to find a place for him in a group home that had lifts and other appropriate facilities.
“Close to six months he was there without any recovery supports,” Eric said, attributing the shortcoming in part to CLBC’s reticence. “As soon as he’s outside the hospital it was on CLBC to pay for the supports and they would rather not.”
Andy moved into the group home on the morning of May 16.
The next evening he choked while eating, his heart failed, and he died. As far as Eric could tell from reports from the coroner and caregivers, the group home had done everything it should, including cutting Andy’s food into small pieces.
While cerebral palsy can affect swallowing, Andy had never shown any signs of trouble eating.
“Nobody saw that as a risk,” Eric said. “He could just scarf it down.... Up until the day it happened we’d all seen him just eat dangerously, shall I say.”
There were however, many other factors underlying the death, Eric said, including Andy’s poor health, his longtime preference for an unhealthy diet and his poor recovery after his November injury. His heart had become too weak.
After Andy’s death, looking back on the years of experience with CLBC, even the people who were empathetic and seemed to want to do the right thing were limited in what they could do, Eric said.
That resulted in a constant need to advocate to the agency on Andy’s behalf.
“What really only got their attention was knowing that there was somebody advocating that wouldn’t stop,” Eric said. “If they got the sense that I would stop, they would not do [what was needed] and they would try to delay as long as possible.”
Things could easily go badly for someone like Andy if they had nobody to advocate for them, said Eric, adding it’s easy to imagine someone like him ending up with nowhere to live.
“I have no doubt there’s people right now out there trying to get CLBC to help and they’re experiencing the same thing that I did, and they don’t know what to do, and they don’t know how to get CLBC to do it.”
Without the advocacy, many people end up in a loop like Andy where they are unnecessarily using hospital resources and wasting police time, Eric said, adding that it would be a lot more efficient to properly fund CLBC to do its work.
“That’s a loop that needs to be broken,” he said. “You ask what happens if someone like me is not involved, well the loop just continues.”
There’s a lack of accountability at CLBC, a desire among politicians to keep their distance from the agency and insufficient funding, he said.
“There’s not enough to go around, is the sense I get,” he said. “At the end of the day, whatever cultural issues exist, I get the sense exist because of an extremely limited amount of funding.”
The work CLBC does is much needed and it needs the resources to do it properly, he said.