Hundreds of people who care for their adult disabled children have told the government what they already know, that the
current system is unfair, unlawful and discriminatory.
The much-anticipated report into the Funded Family Care system showed parents were opposed to being employed by their disabled child and they want
a greater say in how they spent the money they got from the government and not be constrained by a myriad of rules.
It also suggests spouses, partners and civil union partners should be eligible for Funded Family Care, because they are
trusted and provide safe care.
And it called for carers to be paid a living income for their work as full-time carers because they are unable to find
other work.
"I actually don't want to be a family carer. But there is just no other safe choices," one person said.
"No one will take her for care, even for respite and yet I am expected to do all those health cares myself. I've had no
training" another said.
"There is general agreement that no one should be paid caring 24/7 and they should be supported in other ways, but
access to quality and safe community supports and respite is often not available.
"People felt that the current Funded Family Care policy disincentives multiple carers, and the flexibility makes it more
difficult."
But despite spelling out the problems of the current system, it contains no recommendations or suggested courses of
action.
It is the third report commissioned since 2012 into problems with the Funded Family Care system. Despite this, there has
been very little change.
The report was commissioned by the government in September after it announced plans to change the Funded Family Care
policy.
The report writers - Jo Esplin, Tammy Hambling, and Rebecca Rippon - received 922 responses to an online survey and
interviewed 22 individuals and groups.
But due to the tight timeframe, they were unable to talk to all the people and groups they wanted to and suggested the
Ministry find ways to resolve this.
Families reported feeling that the current rules and systems left them with little choice and no flexibility to use the
system as they needed to.
"This does not mean requiring more funds, but rather being able to use them in a meaningful way that supports the
disabled person and the family carer best", the report said.
The report noted that there were two common themes, the ability to pay others at times and greater flexibility about
when they accessed funds.
"Just give us the money and let us get on with it, get rid of all the red tape," one person told the writers.
"These systems create undue and unnecessary stress for people already under stress," another said.
Pay spouses or carers
The current FFC policy excludes spouses, partners and civil union partners from being paid. Of the 680 people who were
asked that question in the online survey, 92 percent answered 'yes'.
The assessment and allocation process is flawed.
To receive FFC there is an assessment process for eligibility and to determine the number of hours a week a family
member can be paid for. That includes tasks a carer might undertake, the needs of the person being cared for and a range
of other factors.
Overall people felt that the 40 hour cap, irrelevant of need, was very unfair. The report writers were repeatedly told
to move away from a tasked base minute assessment.
Suggestions for improvement included:
• Rather than an hours based system, offer a package based system of bands which represent the level of need.
• Have a minimum number of set hours, that can be built on depending on need.
• One person suggested a minimum of 60 hours per week, as this would give a living wage based on across seven days of
care per week, rather than five days.
The Minister of Health has been contacted for comment.