A woman in residential care lay dead in her room for two days before anyone noticed, while music was heard playing on her computer.

Ruth Kathleen Toka, also known as Ruth Finau, had an intellectual disability caused by a traumatic brain injury following a motor vehicle accident when she was 2 years old.

She was living in a small flat in South Auckland when she died from sudden unexpected death in epilepsy in July 2021, linked to her not taking her prescribed anticonvulsant medication.

Her older brother, Jono Toka, told NZME he missed his sister every day. The pair grew up together with their grandmother, Faleono Finau, to whom they were very close.

“Our grandmother was her favourite person in the world,” he said.

“Ruth was dealt some sad cards growing up. She was bullied at school and she was separated at one stage from our grandmother, but she always found her way back,” Toka said.

In her finding last year, Coroner Tania Tetitaha was critical of disability support services provider Spectrum Care Limited for the standard of care it provided Finau, who was in her early 30s.

Now, Spectrum has been further criticised for its failures around Finau’s care, despite her “very high” support needs.

Deputy Health and Disability Commissioner Rose Wall said in a decision released today, that in her view, what happened was a “severe departure” from the expected standard.

She found that Spectrum had breached a section of the health consumers’ code by not providing services in a manner that minimised harm to Finau.

Ruth Finau had been living in supported accommodation since 2014, until her death in 2021.

Toka told NZME that he was comforted by both decisions, which validated concerns he had been raising for years.

“I had multiple meetings with them and those who looked after her,” he said.

Spectrum Care said it accepted the finding and told NZME it had worked with commitment and sincerity to improve its procedures, and had put in place the recommendations from the Health and Disability Commissioner (HDC).

Spokesman Justin Walsh said the organisation “strongly believed” in transparency to ensure all disabled people and whānau had confidence in the support they received.

“This event has been a tragedy for the grieving family and the staff who formed a long-term bond with Ruth,” Walsh said.

“We share that grief.”

The coroner referred the case to the HDC after raising concerns around Spectrum’s level of monitoring of Finau’s compliance with her medication regime.

Music heard coming from Finau’s room

In the days leading up to her death, a staff member who cooked and delivered Finau’s dinner heard music playing on her computer.

The next morning, the staff member, who had then slept over, woke to hear the music still playing on the computer, which made her think that Finau must have been “in a good mood”, but the staff member did not see her all day.

At 3pm, another staff member came on duty, and an hour later, went to ask Finau what she would like for dinner.

He recalled hearing music and, seeing that she was lying on her bed, assumed that she was sleeping.

He did not want to wake her as this could trigger aggressive behaviour, Wall said.

He continued to hear the music playing in Finau’s flat, but he did not hear from her all evening or during the night.

Around 11am the next morning, he noticed the music was still playing, so went to check, and found her lying in the same position as the previous day.

He called her name then shook her, but she remained unresponsive.

Emergency services arrived and confirmed that Finau had passed away, likely early on in the 48-hour period that she had not been checked, it was later found.

It became evident that she had not taken any of her prescribed medication in the few days prior, Wall said.

‘Determined’ to be independent

Finau also had non-insulin-dependent type two diabetes and epilepsy, but was “very determined” to be independent, Wall said.

“Her daily routine consisted of making her own breakfast and lunch, and at 4pm, support staff next door would go to her flat and ask if she would like them to cook dinner for her.”

Toka said his sister tried hard to live her best life, despite the challenges, including that she remembered the birthdays of family members.

However, Wall said in her report that she also had a long history of being physically aggressive towards staff and police and had on numerous occasions presented to mental health services.

Over the years, Spectrum had supported Finau with anger management, and staff had received training in behaviour support strategies to mitigate risks.

Wall commended Spectrum for supporting Finau to live in her own home rather than in a group home, but criticised the organisation for not having plans in place that allowed it to overcome barriers created by Finau for her care, such as the use of text messaging.

Finau was also determined to be responsible for taking all her oral medications and had requested a week’s supply in blister packs. Staff were supposed to remind her daily to take her medication and if she was in a “good mood”, she would take them.

Wall said that in 2021, there were three recorded instances when Finau refused to take her medications.

Spectrum noted that if she was angry, she would refuse and sometimes throw the medications over the fence or on to the roof.

“Sometimes she would hide the blister pack so that staff could not check it,” Wall said.

She said medication reminders could have been placed on her mobile phone to alert her when it was time to take her medication.

Following Finau’s death, Spectrum commissioned its own independent investigation, which found that her policy of only allowing staff into her space when it suited her was a risk, in that it prevented staff from monitoring her welfare and compromised their duty of care.

Wall said staff trusted her to take her medicine but there was no way to check that she had taken it at the right time.

Wall recommended that Spectrum apologise to Finau’s whānau and revise its operating procedures to include alternative ways of conducting wellbeing checks.

That included using emails or text messages, where applicable, but they should not be used instead of face-to-face wellbeing checks.

Wall said it was concerning that it took such a tragic event before Spectrum developed and implemented a new standard operating procedure, including that wellbeing checks should occur at least three times daily.

Tracy Neal is a Nelson-based Open Justice reporter at NZME. She was previously RNZ’s regional reporter in Nelson-Marlborough and has covered general news, including court and local government for the Nelson Mail.