Mother fears Disability Support Services Bill will lead to desperate caregivers harming children

Warning: This story discusses suicide and child harm content that some may find disturbing.

A mother of a boy with a complex disability fears law changes will cut support for families, increasing rates of burnout and leading to desperate caregivers harming themselves and their children.

Victoria Coleman's court case is one of those that will be axed by the Disability Support Services Bill, which is currently before the Social Services and Community select committee.

A landmark ruling by the Supreme Court late last year confirmed caregivers should be considered employees of the government, and afforded the same rights and protections, like sick pay and minimum wage.

But the Minister for Disability Issues, Louise Upston, has said she believes there are better ways to support family carers than treating them as state employees.

The bill also aims to set up a formal framework for disability funding - through the Ministry of Social Development rather than the Ministry of Health - and ensure its future fiscal sustainability.

It shifts responsibility for care from the government to families, saying "responsibility for care of disabled people rests in the first instance with their family and whānau, where appropriate".

And while Upston told RNZ the new legislation would not change current care arrangements and was not intended to put new obligations on families, parents are worried what it will mean for future support.

Coleman's son, Levi, is seven years old and has complex needs - he had two rare bowel disorders and had undergone a dozen surgeries, alongside diagnoses of Down Syndrome, Autism and ADHD, making his care needs similar to that of a toddler.

It's a round-the-clock job for Coleman, who stays at home to care for him, but support funding is capped at 40 hours a week.

It was only late last year that her family was able to lock in adequate support for Levi.

In March 2024, then-minister for disability issues Penny Simmonds tightened the rules on what support payments could be used for.

"At that point, we lost our caregiver," Coleman said. "We were told that we couldn't pay travel, we couldn't do this, and we couldn't do that, and we let our caregiver go."

They lost access to his therapies for speech and movement. It had only been a couple of hours a week, but it had made a difference.

"So that just sent a lot of caregivers like me into a total spin," Coleman said. "We had no care at all. I mean, a lot of us had very minimal [help] anyway, but that was what was keeping us hanging on."

By the end of 2025, Coleman had been caring for Levi for almost seven years full-time, carrying the entire burden almost alone, as her husband still had to work to pay the bills.

"I was extremely isolated, and I became suicidal," Coleman said. "I essentially just had a breakdown. I could not carry on. I had been fighting off burnout for a number of years. I had been bouncing in and out of it, which is a very common pattern for someone in my position. And then I just ... I hit the skids."

Her only support was that of her husband, who had to take time off work so she wasn't left alone, and that of her elderly mother.

"For the government to assume that we have natural supports that are going to prevent us from burning out is just extremely dangerous," she said.

"People need to be aware, A, of the human cost, and B, that the cost of that is going to come back on the taxpayers, and it's going to be far more expensive than just supporting us in the first place."

But she had no choice but to carry on, and became "a robot", making Levi's meals and caring for his needs.

"I've heard many stories of caregivers harming themselves," Coleman said. "Unfortunately, it's also quite common that people end up harming their child as well in an act that they see as compassion, probably, because the world is so cruel."

Following the breakdown, and with the help of an advocate, their family finally received a more appropriate funding package, but caring for Levi remained a fulltime job for Coleman.

Did she hold any hope that the bill would open the door for better outcomes, rather than worse?

"Not as it stands, no, and not if it's rushed through before the election. And given that the government is so blind set on pushing it through regardless and not listening, no, I don't hold a lot of hope at all."

Submissions opened on 22 May and closed on 12 June - only a three-week window.

Coleman and others argued that wasn't enough time for people to digest the bill, compile their thoughts and get them in on time - but no extension was granted.

Upston told RNZ it was important to balance giving people the chance to have their say, with ensuring the legislative process could move forward and provide certainty.

But Coleman said she didn't buy that. "I believe that they've calculated the political risk and they think that there won't be enough support or understanding for it to do them any harm. And I'm hopeful that they are very, very wrong on that calculation."

The total number of submissions received on the bill would not be made public until it's reported back to the house on 13 August.

A select number of people would be invited to speak to their submissions from Tuesday to Thursday this week.

Disability advocate Jane Carrigan, who has been supporting families caring for their disabled relatives for 14 years, said 90 percent had openly discussed suicide with her.

"I discuss suicide like other people discuss the weather," she said.

Most carers would know someone who had at least tried to carry out suicide.

One case that had stuck with her was that of a family who had taken in their sick sister, who had a disabled son. The sister confessed she'd had thoughts of killing herself and her son, but her family talked her down and promised they would look after him when she was gone.

They told Carrigan later they wished they hadn't talked her out of it.

"It was just horrible," Carrigan said. "It just made the hairs stand up on the back of my neck."

Another family she had recently helped was a couple, aged 90 and 101, who were still caring for their son in his 60s.

"That is reflective of a system that unless you go begging for help, no one knows you're out there."

With Carrigan's help, they had recently found him accommodation, but separating a family that had been each other's only source of socialisation and support for 60 years had been a huge wrench for them. If they'd had support earlier, they might have been able to ease that transition, Carrigan said.

A review was launched in 1998, in the wake of the death of Casey Albury, a severely autistic girl killed by her mother in what was eventually ruled a manslaughter.

Professor and psychologist John Werry was commissioned to review the case, and the services provided to her family, and recommend improvements for the care system - in this case, specifically for autism.

His review laid out steps which he hoped would mean this never happened again.

But since 1997, Carrigan said she had counted 23 cases of murder or murder-suicide involving disability carers.

Carrigan would be among those speaking to the select committee about their submissions this week.

Shanika Koreshi from Massey University's school of psychology, is part of a current study gathering stories from caregivers.

"What stands out is the emotional intensity of the stories," she said. "People are not only talking about the practical work of caregiving. They're also talking about grief, and guilt, exhaustion, loneliness, anger, fear, and also feeling invisible."

The study was ongoing, with about 65 responses so far.

The responses showed how the level of support families received changed things, she said.

"The stress is not only from caring itself, it is also from having to fight for support when you're already exhausted."

People had talked to about things they otherwise wouldn't, she said. "The details in the stories have sometimes shocked me."

Stories are published anonymously on the Wāhi Kōrero website. Many contain accounts of broken family relationships, a loss of sense of self and struggling to find support. Some mention suicide.

"If decisions are being made about systems that rely on our family and our whanau carers, then those carers need to be part of the conversation. Otherwise, I think we are relying on their labour while failing to protect their wellbeing."

Minister Upston told RNZ carers played a vital role every day in the lives of disabled people, and the pressures they faced must be taken seriously.

There were free helplines and resources available on the Ministry of Social Development website.

The bill responded to the need for a clearer and more sustainable framework for the people who used disability support services. "It isn't intended to put new obligations on families and doesn't create any additional expectation that families or carers provide more support," she said.

The bill built on previous work for carers, Upston said. "For the first time, support for families' and carers' needs, including respite options for carers, are now part of the assessment. From 1 April 2026, disabled people with flexible funding gained more choice and control over their supports.

"Further work is already underway to improve support for family carers. This includes the carer support package, and the current community consultation, which provides an opportunity for disabled people, families, whānau, carers and the wider community to have their say on how we can improve respite options for carers to take a break and look after their wellbeing."

Meanwhile, eight national disability organisations have signed a join statement calling on Parliament to halt the bill. They include the Disabled Persons Assembly, People First NZ, Carers NZ, Parents of Vision Impaired NZ, the Complex Care Group, CCS Disability Action, Home and Community Health Association and the NZ Disability Support Network.

Collectively, they represented hundreds of thousands of disabled people and family carers, disabled people's organisations, advocacy groups, and support providers across Aotearoa.

Their main concerns were a lack of meaningful consultation with the community, and a lack of time both to submit, and speak to submissions.

"The Select Committee has scheduled only three and a half days of hearings, all in Wellington, with just a few hours available each day for public participation - and no hearings anywhere else in the country," it said.

The hearings continue this week.

Where to get help:

Need to Talk? Free call or text 1737 any time to speak to a trained counsellor, for any reason.

Lifeline: 0800 543 354 or text HELP to 4357.

Suicide Crisis Helpline: 0508 828 865 / 0508 TAUTOKO. This is a service for people who may be thinking about suicide, or those who are concerned about family or friends.

Depression Helpline: 0800 111 757 or text 4202.

Samaritans: 0800 726 666.

Youthline: 0800 376 633 or text 234 or email [email protected].

What's Up: 0800 WHATSUP / 0800 9428 787. This is free counselling for 5 to 19-year-olds.

Asian Family Services: 0800 862 342 or text 832. Languages spoken: Mandarin, Cantonese, Korean, Vietnamese, Thai, Japanese, Hindi, Gujarati, Marathi, and English.

Rural Support Trust Helpline: 0800 787 254.

Healthline: 0800 611 116.

Rainbow Youth: (09) 376 4155.

OUTLine: 0800 688 5463.

Family Violence

Women's Refuge: 0800 733 843.

It's Not OK 0800 456 450.

Shine: 0508 744 633.

Victim Support: 0800 842 846.

HELP Call 24/7 (Auckland): 09 623 1700, (Wellington): 04 801 6655.

The National Network of Family Violence Services NZ has information on specialist family violence agencies.

If it is an emergency and you feel like you or someone else is at risk, call 111.