Carer's campaign: Talia and Sarah's story

For almost 20 years, families of the severely disabled have been fighting to look after their loved ones at home, and to be paid for it. Some of those families are sharing their stories to advocate for a law change, and a fairer policy for all.

Talia and Sarah*

Talia's story

I'm a solo mum, with a 17-year-old daughter who has severe disabilities and very high and complex needs requiring 24/7 care.

Sarah was born with cerebral palsy, spastic quadriplegia, severe epilepsy condition and many secondary chronic medical conditions.

She's in a wheelchair, and she has massive seizures, but she understands on a very normal level. She just can't verbally respond. You can ask her questions, she's determined and knows what she wants. It's gutting because it's like she's trapped inside herself.

I have nursed her with very very limited support. I currently get about 6 hours support care per day.

I used to be a human resources manager, but because my child requires intensive neurological nursing, I am not able to work in an employed role and not recognised by our Government as employed. Instead I'm on a carer's benefit. I receive $125 per week accommodation supplement from Winz, leaving me struggling to accommodate Sarah in a suitable home for her disabilities. I have no hoisting equipment as the home I rent has no space for them and as I am not the owner of the home, I cannot get alterations done.

We have been told by the needs assessor we are receiving the maximum supports available to us. If I require more hours then I need to take it to the ministry. But if I take it to the ministry there's a presumption she should be in an institution. But I won't do that.

I'm not eligible for Funded Family Care because Sarah is under 18. The state thinks that if you're looking after a disabled child it's part of natural parenting. But there is a complete difference - I'm providing intense, neurological nursing. It's not related to natural parenting. There's nothing natural about a 17-year-old in nappies, who has feeding tubes sticking out of them.

I find it very hard to give her quality of life. We are wracked with constant medical problems that compromise her life. I try my hardest, I take her out to feed the ducks, I take her to the zoo. But our life is so medical, there's only tiny timeframes where we're not feeding or medicating or changing a nappy.

We live a really isolated life, just me and my girl. But we accept this is our life and get on with it.

If I was paid for the work that I do it would give me financial security. It would remove the stigma of being a beneficiary. It would give back self worth and my dignity. I would be entitled to health and safety, and retirement funding and KiwiSaver. I could have had a study grant. I was denied that by Winz because they said I wouldn't be able to pay it back.

For me, it's about the future. If we get compensation, that's in the past. The damage has happened already. But we have to continue living in the system. Everything we've had to fight and fight and fight for. We've been treated disrespectfully. I feel like I have no worth in this country. Doing my best but I am a nothing.

Currently, I have no future for me to look forward to. We live out of a free box, getting clothes from down the road. We get $125 for accommodation, but it's $400 for the home we live in. The rest of the funds for what should be disability costs are eaten up in rent. We're miles away from a hospital because we've been pushed out of Auckland, and yet she's so reliant on hospitals.

And yeah, there is a choice - I could put Sarah in an institution and go on my merry way - but these are our loved ones. This is my choice.

It's like we're a burden. I feel like they're just waiting for her to die.

*Not their real names