Without change ‘there will be more Rubys’
A review of New Zealand’s disability services, prompted by a mother murdering her autistic daughter, has found no failings by individual staff but warns ‘‘there will be more Rubys’’ unless services improve.
The independent review of services used by Donella Knox and daughter Ruby has identified a series of systemic service issues contributing to Ruby’s death two years ago. Knox smothered Ruby after 20 years as her sole caregiver, and was sentenced to four years’ imprisonment.
Ruby was a large and violent child with serious health problems and Knox felt let down by services supposed to be helping. Nelson Marlborough District Health Board chief medical officer Dr Nick Baker said when the review was launched last year he expected it would ‘‘validate the tireless efforts and expertise’’ of the teams and experts who worked with Ruby over the years.
Leading paediatrician Dr Rosemary Marks, who headed the review, said she found ‘‘no evidence of any deficiency of care provided by NMDHB staff’’.
‘‘Several staff members have gone above and beyond what what was required,’’ Marks said, presenting her findings yesterday. But she also issued a warning: ‘‘Unless the Ministry of Health works collaboratively with all DHBS to ensure that the needs of adults with disability are met, there will be more Rubys.’’
A recent study found more than 400 people with disabilities were killed by a parent or caregiver over five years in the United States, Marks said.
‘‘With that rate in New Zealand, we would expect one person with a disability to be killed each year ... killing children with disabilities is no different from killing other children.’’
WHAT HAPPENED?
The events leading up to Ruby’s death were ‘‘far from unique’’, Marks found.
More severely intellectually disabled people with complex health problems or challenging behaviour were surviving into adulthood, as medical care improved, she said.
Ruby was diagnosed with severe autism spectrum disorder when she was a child, and later with a severe intellectual disability. She could not speak or empathise with others, and was often aggressive and violent.
Ruby also had spina bifida, gastro-oesophageal reflux, haemorrhoids, incontinence and chronic constipation that caused further medical problems.
Ruby was helped by several primary and secondary health services but they did not communicate with each other well, and failed to recognise Knox was reaching crisis point, Marks said.
‘‘If Ruby had been under the age of 17 years, I am confident that health professionals would have notified Child Youth and Family Services of their concerns.’’ Knox had threatened to hurt Ruby twice shortly before her death, telling paediatric homecare nurses on the phone she was going to drive off a cliff two months before Ruby’s death.
She was visiting the emergency department and contacting primary care services frequently about Ruby. A few days before the murder, Knox told staff at Wairau Hospital, in Blenheim: ‘‘I don’t know what I would do to her’’.
Following either of the threats a call could have been made to the police but staff did not want to damage their fragile relationship with Knox unnecessarily, Marks said. Staff instead tried to work out whether Knox was serious and later Knox seemed to have calmed down, saying she was ‘‘just venting’’.
‘‘The majority of health professionals in New Zealand would share the opinion of those involved that a call to the police would not result in a different outcome,’’ Marks said.
Among many findings, Marks said disability services did not have enough resources to help families caring for people with severe disabilities. Funding had increased very little since 1993, and suitable caregivers were scarce, and there was no provision for training them.