A woman with cerebral palsy and a moderate intellectual disability nearly died when a bowel condition escalated catastrophically after support workers at her group home failed to follow her nutrition and care protocols properly, the disability royal commission has heard.
The royal commission is examining matters of violence, abuse, neglect and exploitation in disability services, focusing on two disability group homes run by an NDIS provider.
On Wednesday, the commission heard extensive evidence from Jennifer*, mother of Natalie*, who has cerebral palsy and a moderate intellectual disability. Natalie also uses a wheelchair, hearing aids and has glasses. She was described as “cheeky, sociable” and “very trusting”.
Jennifer gave evidence via a written statement that was read aloud by counsel assisting. In it, she detailed her concerns regarding management of Natalie’s health, her finances, and allegations that Natalie was indecently assaulted by one of her support workers in a group home run by Life Without Barriers.
In 2020, Natalie had surgery to remove a calcified faecal mass in her rectum that had changed the shape of her uterus, possibly permanently, and was on the verge of rupturing her bowel, Jennifer said.
Natalie had bowel issues prior to moving into the group home in 2012, and had been taken to hospital with a bowel obstruction early in her time there. Jennifer said she was informed that Natalie was in hospital on that previous occasion only when she was called by Natalie’s father.
Jennifer said she called an LWB staff member to ask why she hadn’t been informed that Natalie was being taken to hospital. “She said she didn’t tell me because she didn’t want to tell me,” Jennifer said in her statement.
Natalie was given mealtime management, nutrition and exercise plans by health professionals to help manage her issues. Life Without Barriers staff were supposed to keep records of her daily food and fluid intake, as well as her bowel movements.
On 9 March 2020, Natalie was taken to the hospital emergency department by a non LWB carer. She was later operated on.
The family was told that Natalie had been close to having a ruptured bowel and sepsis. “The doctors also said they were not sure how things had gotten so bad with respect to Natalie’s bowels,” Jennifer said. “Natalie nearly died because of this incident.”
LWB staff could not produce more than five days’ worth of Natalie’s bowel charts from the months prior to the hospital visit, the inquiry was told.
“I believe that the LWB staff did not manage her properly, despite me raising the importance of her bowel management with disability support workers and the team leaders on a number of occasions,” Jennifer said.
Jennifer said she had given explicit directions to Life Without Barriers upon Natalie’s entry into the group home that her daughter’s personal care ought to be performed only by female staff, as that was what Natalie preferred. Jennifer later discovered that Life Without Barriers was not adhering to this request.
In August 2015, Jennifer was told a male support worker had been charged with the assault and sexual assault of Natalie.
Jennifer said she understood that Life Without Barriers had only reported the alleged assault on Natalie to police after they had conducted their own internal investigation.
The male support worker was found not guilty in September 2017. He was later dismissed from Life Without Barriers.
After the alleged assault, Natalie developed anxiety and would lose her temper in a very uncharacteristic way.
During a later counselling session, the counsellor told Natalie that she would never have to see the male disability support worker who had allegedly assaulted her again.
“[Natalie] started chanting ‘never, ever, ever’. Natalie is mostly non-verbal and had never done anything like that before. Anna [Natalie’s sister] and I started crying because at that point we knew what had happened had deeply affected Natalie emotionally,” Jennifer said.
Over the nearly 10 years that Natalie was in the home, Jennifer said she attempted to raise concerns repeatedly about what she perceived as failures in Natalie’s care and inappropriate actions of the staff. These included the management of Natalie’s finances, which LWB had effective control over for three years, as they alone had access to her keycard.
“LWB was in practical terms controlling her money,” said Jennifer. “Sometimes, if Natalie wanted to purchase something or go out I would tell her to ask LWB staff to give her some of her money. Natalie would tell me that she had already asked, but that they would not give it to her.
“I’m not really sure how LWB was using Natalie’s money. I was still paying for many of Natalie’s lunches out, pharmacy bills and new clothes.”
Jennifer said she made many complaints to Life Without Barriers during the period Natalie lived there. “The only time LWB appeared to take any of my complaints or concerns seriously was around the time that the indecent and sexual assault allegations concerning Natalie came to light in 2015,” Jennifer said.
Life Without Barriers will give evidence later in the inquiry.
* Names are pseudonyms used by the commission for privacy reasons