A year on from the murder of autistic woman Ruby Knox, a review of disability services in Marlborough and Nelson is about to start. Reporter Jennifer Eder finds out how the review could improve the way healthcare workers manage clients with severe disabilities.
An independent review of disability services is not a finger-pointing exercise, but a chance to improve the way staff manage high-risk cases, the region’s chief medical officer says.
The Nelson Marlborough District Health Board is faced with a number of questions following the murder of autistic woman Ruby Knox in Blenheim last May, who was in and out of medical care in the years and months before her mother Donella smothered her.
Leading paediatrician Dr Rosemary Marks will head the review of services used by Ruby, hoping to answer those questions and recommend improvements.
The review, scheduled to start this month, was pushed back to coincide with Marks’ schedule as a developmental paediatrician at Starship Children’s Hospital.
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The former Paediatric Society New Zealand president has previously advocated for disabled children and helped to develop national guidelines for the care of people with autism.
But what can hospital staff do if a patient or caregiver refuses help? What should they do if they think a family member could hurt a disabled patient?
And how can support workers better care for patients with severe disabilities as they reach adulthood?
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These are the questions Marks has been tasked with answering.
Shortly before her death, Ruby, aged 21, made the transition from paediatrics to adult care.
A Support Works report read out at Donella Knox’s sentencing in December commented on how difficult the transition could be.
When clients reached adulthood and the support available to them changed, parents could feel like no-one wanted to help anymore, the report said.
Board chief medical officer Nick Baker said the board would also be looking at the transition to adult services independently of the review.
A broader plan to improve the transition would be created drawing on the review’s recommendations, Baker said.
For diabetes and cancer patients there were already services in place targeting adolescents as they moved from child, paediatric and school-based services to adult, medical and community-based services, he said.
But a similar adolescent service for people with severe disabilities would not be as “clear-cut”, Baker said.
“What we want to work towards is making a smooth ramp from child services into adult services with continuity until transition is complete.”
Another goal of the review would be to help staff manage risks when parents or caregivers declined support or did not use healthcare and support available to them, Baker said.
Parents and caregivers refused respite care for children or dependents quite frequently, Baker said.
Respite care was important to give families with high-needs children a break, but parents did not always accept the types of respite care offered.
In the months before Ruby’s death, Donella Knox cancelled her respite service and continually refused to place Ruby in residential respite at Trolove House in Stoke.
“This kind of respite helps families to function as best as they can, for example, by allowing siblings to get the time and attention they need from their parents. This is why it is very important that families who are eligible for respite care actually use it,” Baker said.
“But we acknowledge their right to choose because in the majority of cases, parents know best. It can be difficult for parents to separate from their children, especially if they don’t have full confidence in a caregiver.”
The review would also try to identify how staff should respond when they have concerns about family violence when the potential victim was over 17-years-old, but was vulnerable and unable to care for themselves.
Healthcare workers were required to respond when they suspected domestic abuse.
“We have very clear and established policies and pathways for the assessment of suspected child abuse, or domestic violence, and for the interventions required.”
Vulnerable adults over the age of 17 were not covered by the Child, Young Persons and Their Families Act, but if they were unable to speak for themselves they could agree to domestic violence assessment and intervention, Baker said.
“We are hoping that Rosemary’s review will shed some light on what we can do to improve this area and we know that other DHBs will look to our review findings also.”
After Donella was sentenced to four years’ imprisonment in December, her lawyer Simon Shamy said the case was a “perfect storm”.
“They lived in a small centre with limited medical facilities and not enough money, and no social support. People did their best, but there just weren’t enough resources.”
Baker agreed it was an unusual case.
“While the likelihood of a chain of events leading to Ruby’s murder happening again is low, the likelihood of us treating and caring for young people with autism and complex needs is high,” Baker said.
“In Ruby’s case, this chain of events include very uncommon factors, reported publicly during the court proceedings, such as Donella discharging her daughter from our care against the advice of Ruby’s multidisciplinary team, and her repeated refusal of residential respite offers.”
Focusing solely on Ruby’s case would limit the lessons to be learnt, so the review would focus on improving systems of care instead, Baker said.
“The review will look at the care and treatment provided to Ruby Knox and I anticipate that this part will validate the efforts and expertise of multidisciplinary teams who cared for Ruby over many years.”