Teuila Fuatai: Why the Governments disability funding policy for families is perverse

OPINION:

All families run in their own way. Dynamics, personalities, routines, even hierarchy – they give each of these special units their own flavour.

A glimpse into one that’s not your own offers insight into the norms and practices of others. It can highlight how different we all are, while simultaneously showing how kinship is cherished across various cultures, backgrounds and family setups. It can also show the strength of family relationships, and decisions made so everyone is cared for.

For some, those decisions come with extra layers and responsibilities which likely wouldn’t be met or acknowledged without familial ties. They go far beyond the support and care we need from loved ones when life goes in an unwanted direction.

For parents like Peter Humphreys and Christine Fleming – who are the primary carers for their now adult children with high and complex disability needs – it’s also meant years of having their relationships, and by extension “worth as a parent”, scrutinised and arbitrarily valued by the Government.

For Humphreys, 33-year-old Sian is one of several children he and his wife have. Sian was diagnosed with Angelman syndrome as a toddler, a genetic disorder affecting the nervous system and causing a range of problems, including serious developmental issues. She lives at home with her parents.

Because of her disability, Sian cannot be left unsupervised and requires help with basic tasks. In this family, Humphreys is the full-time carer for Sian. His wife also cares for her, however that is balanced with a full-time job outside of home.

Fleming and her son Justin’s household is just the two of them. Justin, 40, has Williams syndrome and requires 24/7 supervision. His complex mix of disabilities – and, importantly, physical and psychological wellbeing – is at the forefront of Fleming’s mind in her role as parent and full-time carer.

For their family unit, which also includes Justin’s sister Dana who’s long since moved out of home, it’s been that way since Justin was born.

Like other families, Humphreys and Fleming run their households in a way that suits them. What sets their families apart is the thought and resources dedicated to the needs of Sian and Justin respectively.

At a basic level, they prioritise their care and wellbeing because not doing so would result in dire consequences. As has been articulated in numerous legal cases around funding for families like Humphreys’ and Fleming’s, without the full-time care of their parents, those with needs as complex and severe as Sian and Justin’s would be in full-time residential care.

Move beyond this, and there’s a far more fundamental basis behind Humphreys’ and Fleming’s respective roles – that is, they love their children and want them to have a quality of life they wouldn’t get if they weren’t in their own homes and with family. They understand the care options out there, and this setup suits their children best. It’s where they’re happiest, safest, and most comfortable.

Family dynamic under fire

Perhaps most cruelly, it’s this very family dynamic that comes under fire when parents like Humphreys and Fleming query minimal funding available for families like theirs.

They get interrogated repeatedly about tasks like toileting, feeding and bathing, so a “needs assessment” can be performed. They then have their relationships as parents essentially sidelined so someone can assign a minimal numerical value to the care they provide based on daily tasks.

To top it off, that’s then funnelled into a perverse Government funding arrangement called “individualised funding” which sees them engage as an employee of their child – a setup that’s insulting and nonsensical for a range of variables, including the fact Sian and Justin simply lack the mental capacity to fulfil employer obligations.

For Humphreys and Fleming, it’s meant pursuing a fairer and more just funding arrangement through the courts. Last week, Humphreys received the latest judicial decision in his decades-long endeavour for funding for families like his.

The Employment Court found Sian “could not have been his [Humphreys’] employer” and declared the Health Ministry as his true employer in the current arrangement. He expects this will be appealed.

Fleming is in a similar situation. An Employment Court decision in May outlined the Health Ministry was her ultimate employer, rather than Justin. The Crown has already appealed aspects of this decision, affecting the amount of funding Fleming and Justin receive.

Both these families are now preparing for more bureaucratic and legal hurdles that ultimately devalue the best way to care for their children. Sadly, they are representative of a number of families being marginalised by the Government’s backwards individualised funding policy and ongoing belligerence to uphold it.

It’s time that was put right, with a system that actually helps those it’s supposed to.

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