Disability regime ‘needs change’
A mother’s successful appeal against a decision to pay her parttime for the fulltime care of her disabled son has shown the system needs to change, the Disability Rights Commissioner says.
Auckland woman Diane Moody, 76, is a caregiver for her 51-year-old son, Shane Chamberlain. He has a severe intellectual disability, is partially paralysed and has Williams Syndrome, which causes life-long health problems.
Despite Moody’s care being constant, the Ministry of Health decided she was eligible to be paid for only 17 hours of work a week.
She took the ministry to court in 2017 and on Wednesday her appeal was upheld, with the Court of Appeal finding a ‘‘serious error’’ had been made.
Disability Rights Commissioner Paula Tesoriero applauded the decision, saying it recognised the hardships faced by people caring for disabled adult family members.
‘‘Dedicated family members have had to go through protracted, complex and stressful court proceedings to access fair and equitable compensation for their work,’’ she said.
‘‘By recognising this, and encouraging these matters to be settled without litigation, the Court of Appeal has shown that there need to be changes to the current system to make it more accessible for the people it is set up to help.’’
In his decision, Court of Appeal Justice Rhys Harrison referred to his ‘‘unease’’ about the complex processes surrounding funding for disability support services.
‘‘They verge on the impenetrable, especially for a lay person,’’ he said.
‘‘We hope that the ministry is able to find an effective means of streamlining the regime, thereby rendering it accessible for the people who need it most and those who care for them.’’
Tesoriero echoed those concerns. ‘‘We must ensure disability support services are appropriate and accessible and enable people to provide the best possible care to disabled family members.’’
She said she was hoping to meet with the Minister of Health over the issue ‘‘at the earliest opportunity’’.
Still reeling from the decision, a ‘‘delighted’’ Moody said on Thursday she was just happy people were taking notice of family carers.
‘‘The more people talking about us the better,’’ she said.
Despite the phone ringing off the hook, it was just another day.
‘‘People say to me: gosh, how do you cope, how do you manage? Sometimes I sort of look at them and think: what a funny question to ask me, because it’s just always been my life.’’
Does she feel like a hero? No, but she’s not that sort of person anyway, she said.
‘‘I didn’t do this for just Shane and I but for all families in New Zealand, I want this for them too. I’m quite happy to keep fighting.’’
Prior to 2013, people living in the same home as disabled family members could not receive payment for caring for them – although unrelated people could.
That changed after a Court of Appeal ruling that the policy was discriminatory on the basis of family status.
In 2013, then-health minister Tony Ryall announced about $23 million a year had been set aside to pay about 1600 family carers for their work.
The fund was available to those caring for a person over 18 with high needs, although the carer could not be the disabled person’s spouse. Family carers are paid the minimum wage.
The number of hours carers are paid for – up to a maximum of 40 per week – is determined by a needs assessment of the disabled person.