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Home / New Zealand

Dying man and wife at 'breaking point' due to restrictions in family carers policy

Emma Russell
By Emma Russell
Multimedia Journalist·NZ Herald·
28 Jun, 2018 05:58 AM4 mins to read

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Glenda Lovatt talks about Motor Neurone Disease, which her husband suffers from, and the lack of funding they are getting. / Video by Greg Bowker

A man dying of motor neurone disease and his wife who provides him with fulltime care are having to sell their house and leave family in Auckland in order to survive.

West Auckland couple Glenda and Grant Lovatt told their story of struggle last month, now they say they are at "breaking point".

The pair, unable to work, receive just over $500 a week of Government funding and have been relying on donations from strangers and food parcels for the last two years.

Glenda provides fulltime care for her dying husband and gets nothing. Photo/ Greg Bowker
Glenda provides fulltime care for her dying husband and gets nothing. Photo/ Greg Bowker

Since the Herald published their story, the Ministry of Social Development provided further assistance for car repairs, food and doctors' fees.

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But while Glenda acknowledges the short-term gain, their situation has only worsened due to spouses not being eligible to be paid for providing fulltime care to their disabled partners.

"We are seriously looking at selling our house to be able to survive and to get a disability vehicle so that Grant can go out because he hasn't been out of the house for two and a half years - he's basically housebound."

Grant Lovatt, 58, was diagnosed with motor neurone disease in 2012. In 2014 a neurologist gave him less than 12 months to live but he continues to battle through.

Glenda said the Government's policy won't pay a spouse a living wage to look after their partner but they will pay for him to go into a rest home which is more that $1500 a week.

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"Which is effectively costing the Government more than if spouses could be paid a wage."

Group manager of Disability Support Services for the Ministry of Health, Toni Atkinson, said a person in a residential service costs the Ministry on average $80,000 per annum.

"However, funding is based on an individuals needs and can range from $23,000 to $500,000," Atkinson said.

Atkinson also confirmed that spouses were still not being eligible to be paid for providing fulltime care to their disabled partners under the ministry's Funded Family Care policy.

Discover more

New Zealand

Family carers' heartfelt call on Govt for law change

05 Mar 04:00 PM
New Zealand

The cost of care: Wife and sick husband about to lose home

13 May 05:13 PM
New Zealand|politics

New report slams 'disgusting' family carers policy

15 May 05:42 AM
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Gifts of cash 'godsend' for motor neurone couple

22 May 05:00 PM

Associate Health Minister Julie Anne Genter has previously described the policy as "one of the worst human rights violations of the previous government".

A Ministry of Health spokesperson said it was estimated that around 22,500 spouses in New Zealand were providing fulltime care for a disabled partner. This included aged-related needs.

Today, Genter said she continued to work hard to fix this situation, along with other Ministers and the Minister of Health David Clark.

"Obviously I am unhappy with people not getting access to the support they need, and am pushing for change as soon as possible," Genter said.

The Herald asked Genter for the time frame they were working towards to change the policy and received this response: "We need a solution that's durable and fair for families with complex needs, and unfortunately that is taking time."​

For the Lovatts, selling their family home would mean moving out of Auckland far away from all their family and support systems.

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"What we need is to stay close to family and give my husband the dignity of living with what time he has left but that policy is stopping that from happening."

A brief history of family care cases

2000:

Discrimination complaint lodged with the Human Rights Commission about the Government's refusal to pay family carers.

2005:

The complaint is unable to be resolved and is lodged with the Human Rights Review Tribunal.

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2010:

The Atkinson claim is upheld by the Human Rights Review Tribunal, finding that excluding payments to carers of disabled family members was discriminatory and in breach of human rights.

2010:

An appeal by the Ministry of Health is dismissed by the High Court.

2012:

An appeal by the Ministry of Health is dismissed by the Court of Appeal.

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2012:

The government announces it will not appeal the Atkinson case to the Supreme court. It instead plans policy to address the issue.

2013:

Part 4A of the NZ Public Health and Disability Act 2000 is rushed through on Budget night under urgency. It underpins a limited Funded Family Care policy, and outlaws any further court cases.

2016:

Margaret Spencer, the mother of an adult disabled man, is awarded $200,000 compensation by the High Court for discrimination, for the years the Ministry of Health refused to pay her for her work.

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2017:

The Human Rights Commission complaints of seven families are bundled together as the King case, and put forward as a compensation case to the High Court.

2018:

Shane Chamberlain and his mum Diane Moody win their case, which argued the Ministry of Health had wrongly assessed the number of hours Diane should be paid for looking after Shane.

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