Connie Williams’s kitchen counter is covered in photos of her late sister, Krista Ball.
The photos show Ball smiling, laughing, singing — unbothered by the barriers presented by her cerebral palsy, according to Williams. She said her sister was a ray of positivity until her final days, which she spent lonely and afraid in a hospital bed.
Ball lived in an alternate care home in St. John’s and relied on community support workers to assist her with day-to-day activities, Williams explained. She said members of the team she came to trust and adore were not allowed to accompany Ball when she was admitted to hospital in January, despite being allowed during a previous admission.
“While she was in hospital, she had a tracheostomy that was kept so she was unable to speak at all. Having one-on-one support there, they [would have been] able to recognize subtle cues,” she said.
Williams said when she pressed for a reason the request for her home support team was denied, she was told the hospital was simply following policy.
Connie Williams’s sister, Krista Ball, died in hospital without having a familiar support worker at her bedside throughout her stay. She hopes a promised health-care policy will prevent others with intellectual disabilities from having to go without their support workers in acute care. The CBC’s Maddie Ryan has more.
The province’s 2005 Provincial Home Support Program Operational Standards say “subsidized service is not provided to individuals in hospitals, personal care homes, community care homes, long term care homes, or health centres.”
Williams doesn’t quite understand why that rule is in place and questions why it’s only sometimes enforced.
A statement the province’s Department of Health and Community Services sent to CBC News this month said requests are handled on a case-by-case basis.
“We weren’t asking for any extra funding, we weren’t asking for anything extra,” Williams said. “We just wanted that care to follow her through from the home into the hospital.”
Williams hopes that policy will be adjusted to allow workers in acute care settings to ensure nobody has to experience the same fear on their deathbed.
Ball died in March from a brain bleed at the age of 43. Williams knows the outcome likely would have been the same if a support worker was present, but she feels her sister deserved to die surrounded by familiar, comforting faces.
Ripping out feeding tubes and IVs
The fear of a loved one being left alone is a feeling Shirley Brooks-Sharrow is all too familiar with.
Speaking from her home in Florida, she told CBC News she worries for her 66-year-old brother Hubert Brooks every day.
Brooks wasn’t supposed to live past two years old, according to his sister. He is blind, nonverbal and has limited movement, and therefore requires around the clock support from a team of workers.
That support didn’t follow him when he was admitted to the Health Sciences Centre in St. John’s with pneumonia last month and had to get a feeding tube put in, she said.
Living as far away as Florida when her brother is struggling back home has been difficult for Brooks-Sharrow. The updates she receives from her brother’s doctors and alternate care home are disturbing.
“He took every IV, all the feeding tubes out,” said Brooks-Sharrow. “I would assume that happened because he was scared. He wasn’t hearing anyone from his team.”
Much like Williams, Brooks-Sharrow was told it’s against policy for support workers to be present in the acute care setting. She wants that policy to change.
“Their excuses are so lame,” she said. “Who needs to get this done before something really bad happens?”
Recommendation made in 2023
N.L. citizens’ representative Bradley Moss has heard similar stories over the past three years.
Moss made a range of recommendations to the province related to medically complex children and adults in his 2023 report, By a Thread.
The citizens’ representative recommended that “home support workers be introduced to acute care admissions to provide optimal support for the family.”
He told CBC News his office has intervened in some cases to make that happen. Concrete policy, according to Moss, would ease a heavy burden for families, workers and the health-care system itself.
“The complex needs individual, whether it be a child or an adult, sometimes nonverbal, needs… some familiarity in a very unfamiliar and, I would imagine, sometimes terrifying environment,” he said.
Moss added support workers often form a strong bond with their clients that could be severed if they’re barred from taking their work to the hospital.
“If their employment stops the moment the person goes into the acute care setting, then they have to leave for some other pasture,” he explained.
Moss said the health minister at the time, Tom Osborne, agreed to the recommendations made three years ago. He said he’s been having regular meetings with Newfoundland and Labrador Health Services since, and current Minister of Health Lela Evans seems just as receptive.
Policy in the works
Evans was not available for an interview with CBC News, but Department of Health and Community Services spokesperson Khadija Rehma emailed a statement saying a policy is being finalized and will be completed “in the near future.”
“We recognize that there are times when a patient or family may benefit from the support of a home support worker in acute care, specifically if a patient has complex care needs, such as an intellectual or developmental disability,” the statement said.
The department said it will provide engagement and education to caregivers that will “clearly outline the intent of the policy, eligibility considerations, and the process for patients and families to make a request when unique circumstances arise.”
There are many details to iron out, but Moss said Evans wants to meet with him in June.
“I think that the message has been delivered to her loud and clear,” he said. “I’m not prepared to let this go.”
Download our free CBC News app to sign up for push alerts for CBC Newfoundland and Labrador. Sign up for our daily headlines newsletter here. Click here to visit our landing page.
