A sobering report ordered after a Blenheim woman murdered her severely disabled daughter is calling for urgent reform, saying disability services across the country don't have the resources to cope with giving families support.
It's been two years since 20-year-old Ruby Knox was killed when her mother Donella Knox drugged and suffocated her at home on May 16.
Now a report warns there'll be more murders just like it if nothing is done to address the needs of adults with disabilities across all DHBs.
An independent review was commissioned by the Nelson Marlborough District Health Board to identify care and service delivery problems that may have contributed to Ruby's death and to make recommendations to prevent similar problems in the future.
The report's author, developmental paediatrician Dr Rosemary Marks, didn't find any shortcomings in the care provided by NMDHB staff and considered that the event could have happened "in any DHB".
However, she identified many gaps at both local and national levels, particularly at the time a person with disability transitions from child to adult care.
Dr Marks said there were signs the situation was deteriorating in the months leading up to Ruby's death; including the family's frequent visits to Wairau Hospital's emergency department, consulting a different GP to the one they were enrolled with and a reduction of respite care.
The report found no single person or agency was aware of all those factors.
Health professionals had heard Donella threatening to do harm to Ruby on two occasions, including one instance where a threat was made to drive off a cliff and during another, Donella had stated "I don’t know what I would do to her".
Dr Marks said staff concerned in both instances did "take reasonable steps" to follow up on the threats. But that if Ruby had been under the age of 17, "I am confident that health professionals would have notified Child Youth and Family Services of their concerns," she said.
In addressing the issues above, Dr Marks recommended the establishment of an "early warning score system", which would be triggered by concerns from a professional.
A social work assessment would have to be carried out whenever two or more risk factors were identified including observing a rise in ED visits, a change of primary care provider, a drop in school attendance, or escalating behaviour in a person or their care giver.
The author also called for the Government to introduce a mandatory system to protect vulnerable adults, as there is for children under Oranga Tamariki.
Dr Marks said there is a lack of training in New Zealand for those who provide respite care to children and adults with disability. But she hoped that disability support projects currently underway will result in better outcomes for people like Ruby and their families.
Disability advocates are welcoming the review but say there needs to be a change in attitude toward disability.
Disabled Persons Assembly’s Dr Esther Woodbury says she wants to see meaningful investment in disabled people in New Zealand.
“There are a lot of costs to being disabled which are not supported currently under our support system, under our welfare system and I think that can put so much pressure on individuals and families and I think that is something I'd like to see talked about more,” Dr Woodbury told 1 NEWS.
She agreed with the report’s findings over problems with the transition from child to adult services, describing it as a “crucial point where things often fall over”.
“Where people go from mostly interacting with their peers in the school system to suddenly being quite alone while their non-disabled peers are moving out into the community, moving out of home, moving into education and jobs and that kind of stuff and its often very difficult for young disabled people to be able to have those same opportunities”.
Donella Knox is currently serving a four year sentence for the murder of her daughter in 2016.