15 Feb 2018

The cost of looking after a disabled adult child

From Checkpoint, 5:41 pm on 15 February 2018

Diane Moody's goals for her son Shane Chamberlain are for him to start and end each day smiling.

Last week, Ms Moody, 76, won a landmark victory over the Ministry of Health, over care for Mr Chamberlain, who is 51 but has the intellectual capability of a toddler.

Ms Moody cares full-time for Mr Chamberlain, but the ministry decided to pay her for just 17 hours a week, at minimum wage - a decision rejected by the Court of Appeal

It also noted that it was the third occasion on which a dispute between the ministry and parents who care for disabled adult children had reached them - using words like "unease" and "impenetrable" and saying, "The minister has erred in law."

This follows a history of legal action by parents, first against not being paid at all, then against 'Funded Family Care', introduced by the last government with loud claims it would lead to them being paid.  

The ministry declined an interview, saying they were still assessing the Court of Appeal's decision. Health minister David Clark also declined an interview request.

Instead, Checkpoint spent the day with Mr Chamberlain and Ms Moody, to observe the reality of their day-to-day life.

Ms Moody said she had to prove time and time again that her son's disability had not changed. 

"It's just the same questions over and over again. What does he eat with? Does he drive? What are your goals?"

"I said the only goals I've got for Shane: 'I want him smiling when he goes to bed at night and happy and I want him smiling when he wakes up in the morning and happy during the day," she said.