Children with disabilities are more likely to be living in poverty, and families and advocates say they need more government assistance to help with extra costs.
Child poverty statistics released earlier this year showed one in five children with disabilities were living in material hardship – which meant their whānau might struggle to afford essentials, like healthy food, trips to the doctor or pay their power bills.
That rate of material hardship was more than double that of non-disabled children.
Lizzy is mum to six kids – the eldest is almost 30, the youngest is nearly 18.
Her youngest child is disabled and she said there have been times when her family would have been living in poverty.
“When my husband and I married, we had this vague idea in our minds that life was going to toddle along like everybody else’s: We would have our children, we would get them to a stage where we could both be going to work, we could be saving for retirement, we could be doing work around the house that’s needed.
“All those kind of things that we simply take for granted that’s going to be there, but that never happened.”
Lizzy was told early on in her pregnancy that something was very wrong with her baby – some of the organs were deformed or missing and she was told her baby was not likely to survive.
But, she has defied the odds.
“We are one of the lucky ones of course, we have managed to get to nearly 18 and we will just see what her future holds. Really, nobody knows,” Lizzy said.
It has not been easy though.
Lizzy said her family has struggled financially – she tried to go back to work, but it was just too difficult.
“In the end, I realised that actually there was no competition, it was either my daughter’s health or money, so we chose my daughter’s health and that was it, I just had to give up working totally.”
But there has not always been a lot of support available to cover all of the costs associated with her daughter’s disability.
“We have extra doctor’s costs, there is power, water, medicines which are not covered by Pharmac, you have got transport, you have got medical supplies, you have got specialists and those trips,” she said.
CCS Disability Action senior coordinator Sharleen Tongalea said Lizzy’s family was not alone – financial help is not always available.
“There is a limit with Work and Income, but if it is something outside of the Work and Income criteria, then that is just a no. Families have to look for alternative forms of funding and make applications again.
“It is an administrative minefield if you do not have the right supports and services in place.”
As children grow, their needs change too, Tongalea said.
“The equipment changes and the need for different equipment changes and you cannot always just go down to The Warehouse and buy a modified thing that is going to fit this particular child,” she said.
Making things worse, it is a difficult system to navigate, Tongalea said.
“It is a real minefield for families and a lot of families that I have come across over time are just tired, they are tired of asking, they are tired of the bureaucracy and having to jump through hoops and having to provide specialist doctor’s reports and sometimes you have to take time off work and school to get all of this stuff together.”
Child Poverty Action Group researcher Caitlin Neuwelt-Kearns said disabled children did not have to live in poverty.
“That link is not inevitable, we know from looking at other jurisdictions, like the United Kingdom, where they have far more generous income support for people with disabilities, that that link does not exist.”
Neuwelt-Kearns said the government needed to make changes to ensure families with disabled children get as much support as possible – and it was easy to access.
That included boosting benefits, increasing the disability allowance and simplifying the process for getting it.