The associate Minister of Health says it's not correct to say there is widespread discontent with the changes announced yesterday on the Funded Family Care system.
Photo: Supplied
Yesterday, the government announced changes to the Funded Family Care scheme - the inclusion of parents and partners of disabled people in pay, and an increase in the wages paid to family carers.
Disability Commissioner Paula Tersoriero told Morning Report the changes addressed many of the concerns advocates have been raising for years.
"I think this is a really significant set of decisions and disabled people and their families and advocates have spent years talking about the need to change Funded Family Care.
"I think the most important [change] is that the ability for families to [be able to take court action] and be involved in making complaints about policies and practices that affect them is really significant."
"That's definitely area where further work and much more improvement is needed" - Disability Commissioner Paula Tersoriero
However, one area that's yet to change and that some carers are expressing disappointment about is the assessment process, which is required to calculate how many hours they are paid for.
Ms Tersoriero agreed it was an area that would require improvement.
"Many people have expressed dissatisfaction with that assessment process and that was confirmed in some independent research undertaken last year.
"Some of the things families are particularly concerned about was the cap on 40 hours when in fact much of the care can require around the clock care and that's not taken into account, people would like to see more flexibility in how the money is used and people still talk about the process itself being very onerous."
Ms Tersoriero said she was hopeful that those problems might be eased with the government looking at an alternative.
"I think it's a bit far to say there's widespread discontent" - Associate Minister of Health Julie Anne Genter
Associate Minister of Health Julie Anne Genter told Morning Report she's well aware of the concerns and problems families face due to the assessment system.
Associate Minister of Health Julie Anne Genter. Photo: RNZ / Rebekah Parsons-King
"There actually is quite a large programme of work through the disability support system transformation to look at an alternative, there's a huge pilot happening right now in the mid-Central DHB, but that is a much bigger change to the overall disability support, and it's one that's going to take time," Ms Genter said.
"I really feel for the families, I agree, and we have heard that specifics of having to define down to the minute how they care for their disabled family member is frustrating."
However, she said it was incorrect to say there was widespread discontent with the changes to how family members who care for disabled people are paid.
"The announcement [yesterday] was about fundamental changes to the policy to ensure it's no longer discriminatory ... we've completely reversed that policy which is going to enable us to repeal without litigation, part 4A, and it took us time to get to that point.
"I think for many of the families … they realise this is quite a big step in the right direction, even moving from minimum wage to the pay equity rates will make a substantial difference."
She acknowledged work was still needed on the assessment process but said that would take more time.
"We can always do more to help some of these people who are in really difficult situations."
'This is one of their biggest concerns - is the assessment process'
The Court of Appeal last year criticised the assessment process and urged changes to the policy.
Some family carers for disabled people say the changes don't address the annual assessments.
"The assessment system is just ridiculous, it's absolutely ridiculous" - Disability carer Cliff Robinson
Cliff Robinson, 83, has been a full-time carer for his two adult children for nearly 50 years. He told First Up that the changes were a step in the right direction but the assessment process had been a "bone of contention ever since the scheme started".
Cliff Robinson, the parent of two adult children with intellectual disabilities has fought for a decent wage for fulltime parent caregivers over the last 15 years. The pay increase for caregivers gas gone up drastically but exclude people in his situation. Photo: RNZ/ Brad White
"It's been a continuous battle, they initially gave me 40 hours [of pay] for my son, John, who's absolutely full-on, none for my daughter, not a penny initially for my daughter.
"Then they reduced my son's hours to 29.5 and gave me six hours a week for my daughter eventually I went to the Ombudsman and got back the 10-and-a-half hours that they'd taken off me given back."
Other carers of disabled family members faced the same problems too, he said.
"I've talked to many of the parents [in the scheme] this is one of their biggest concerns - is the assessment process."
Disability advocate Jane Carrigan said the assessments process was degrading.
"When a needs assessor asks you 'can the person toilet themselves?' and you say 'no, I have to assist them in that process', that information is truncated down to that person is entitled to two minutes twice a day assistance to go to the toilet, and if person is incontinent they may have an extra five minutes chucked in each week."
Diane Moody, who cares for her adult disabled son, said she would be surprised if anyone who now qualified for the Funded Family Care scheme would get paid for 40 hours a week.
Diane Moody, 76, cares for her son Shane Chamberlain full-time Photo: RNZ / Screenshot
Ms Moody cares for her son fulltime, yet he was originally assessed as needing 11 hours of care a week.
It's taken five years of fighting to get that up to 40 hours and she is warning others not to get their hopes up.
"They'll go through the assessment and say 'oh well, you can have five hours a week' and 'you can have 20 hours' and then they're not happy and then it'll go through the system again."
"I don't they're quite excited as the government would like" - Paul Dale QC
Paul Dale QC, who acts on behalf of parents wanting a better deal from the Health Ministry, told Morning Report there were complaints from carers about the assessment process.
"It's degrading in the way they go about it but worse is you end up with these absurd results where parents who have, [like] in Diane's case, a totally disabled son, who's got the mental age of five, can't do anything by himself where the outcome of the assessment process was to determine that she should only get 17 hours [of pay] a week, that apparently is not going to be changed.
"So having to go through that process is both offensive and ridiculous in my opinion."