Five things we could do right now to support disabled children

Ideas from the community....

Life with a disability in Aotearoa is hard. I asked parents of disabled children what changes they’d like to see made to support our most vulnerable tamariki.

The quotes in italics are from families who told me how much they’re struggling. I am, as always, grateful for their sharing.

What could the government do right now that would help you and your family? It’s a simple question that I’ve been asking families for the last few months. It’s impossible to have just five things - but for the sake of brevity, I’ve tried!

Here are some ideas from the parents of disabled, medically fragile, and immune compromised community…

Photo by Zachary Kadolph

Increase the disability allowance immediately

“Cost of living is high, paying for therapy to help our son makes things a struggle even more. To be able to provide therapy, I need to work at least part time but that presents its own difficulties around childcare. It’s a constant struggle to balance and make financial ends meet while still giving the kids the support, time and love they deserve from us and external supports for our son”.

“It's hard to find people to help care for your disabled child. It’s expensive to have someone who knows what they are doing. Because of this, I didn't work for three years so I could look after my child and all we got was the disability allowance. We should be supported and assisted if we stay at home to look after our child.”

The Child Disability Allowance is $52.79 a week. You can get a Child Disability Allowance only if your child has been assessed as needing constant care and attention for at least 12 months because of a serious disability.

Disabled children are more likely than non-disabled children to be in low income households. One in five disabled children in our country live in “material hardship”. That’s 20%. This is more than double the rate of non-disabled children who live in “material hardship” 10%.

Māori, Pasifika whānau with disabled tamariki are more than twice as likely to be experiencing poverty compared to Pākehā families.

On 1 April 2022, the allowance increased by $3 per week due to the Annual General Adjustment. This cannot and should not be considered a real increase. In the UK, disability allowances are paid at roughly three times the rate in Aotearoa. The Child Action Poverty Group says disability allowances must be trebled.

In the last budget there was no increase to the child disability allowance despite the government knowing disabled children are living in poverty.

Make supports like the child disability allowance and access to therapies automatic

“The hoops to jump through are ridiculous. Dealing with WINZ was a nightmare.”

“At Winz they keep asking me if my child’s incurable, life-long, degenerative disorder has been fixed so they can stop giving me the tiny amount they give us - that barely covers even 1/10th of what we need”.

Dr Rebekah Graham is an incredible advocate for disabled tamariki. She has completely summed up what parents told me about how the disability allowance, carer support and therapies access model struggles to support our tamariki.

“Working collaboratively from a high-trust, autonomous model - with an emphasis on meeting the point of need with as few barriers as possible - means that families receive needed supports when and as they need it,” she writes.

“A low-trust model of punitive welfare support creates multiple administrative burdens for families. For example, parents who receive the Child Disability Allowance have to regularly provide specialist reports to confirm that their child is still disabled; if they receive Carer Support they must correctly fill out extensive paperwork and track receipts for reimbursements; if the family is eligible for Working For Families, the parent must perform precise calculations for a family’s income - or risk incurring a debt that must be repaid the following year.”

“The compounding effect of these interactions, barriers, and worries can leave parents of a disabled child without the necessary financial supports.”

Establish and set a rare disorder framework co-designed with the community and Rare Disorders New Zealand

“Because my son’s rare disorder was not well known he did not qualify for funding even with his limitations and behaviour issues. However, now with his additional diagnosis of autism, doors are finally being opened. The supports provided should NOT be based on whether it is a well-known disorder.” [pdf]

"Kids with rare disorders face additional barriers to accessing care and support, and this can make it really hard for parents to effectively advocate for their children. A rare disorders framework would mean there is a better picture across our health and support sectors of what kids with rare disorders need. It would mean recognising the health inequity these tamariki face, and addressing that through better access to treatments, specialist care, and ongoing support."

There are around 300,000 New Zealanders, one in 17 people, living with a rare disorder - half are children.

Many congenital or rare disorders are considered "chronic illness" and therefore don't meet the criteria for disability services such as respite care.

New Zealand needs a health system that doesn’t make life harder for disabled children just because their health needs are from a condition that isn’t well known. The Government should work with Rare Disorders NZ to co-design a framework that ensures people living with a rare disease are cared for, protected, and supported.

“Health equity is crucial to our healthcare system, and equitable healthcare for people with rare disorders is no different” says NZMA Chair Dr Kate Baddock. “Those living with a rare disorder in New Zealand face inequitable access to diagnosis, treatment, and care. There is significant opportunity to enact meaningful change in our health policy that will benefit those living with a rare disorder and their whānau, and recognise them as a national health priority.”

On 2 March 2021, the Government announced that it had commissioned a review of the Pharmaceutical Management Agency, known as Pharmac. The Pharmac Review Panel’s recommended that the government ‘develop a strategy that will lead to better, more timely services and more equitable support and outcomes for people and whānau with rare disorders’.

Provide mental health support for whānau with tamariki surviving chronic illness and incurable health conditions.

“It's crippling. It's also heartbreaking when you can't afford therapy to help them process everything. In our family we have to take turns with therapy. I know we are so lucky that that's even a option.”

A study in 2020, before the pandemic, found parents of chronically ill children experience poorer mental health (more anxiety and depression), and mothers of those with congenital anomalies may have greater risk of cardiovascular disease and mortality than parents of unaffected children.

Another study found children with long-term health conditions may be more likely to experience mental illness in early adolescence than healthy children, according to new research.

Another found, longterm family exposure to stressful events, connected to the long-term management of their child’s chronic illness, has been shown to compromise the mental health of the family, including the well sibling.

A 2002 meta-analysis found siblings of children with a chronic illness experience more mental health difficulties, particularly internalising problems such as anxiety and depression.

When your child has a disability or has a chronic illness - they have a mental health need that must be supported. Often their entire family does too. Our families need to be able to access mental health supports in recognition of the trauma of going through disagnosis and treatment. Automatic counselling funding for families after diagnosis would protect our vulnerable tamariki and families from crisis.

Skylight Trust provides counselling and support to tamariki and their families going through grief, loss and trauma. They’re funded through a mix of fundraising events, grants and donations, sponsorships, and Government contracts through MSD, Oranga Tamariki and Compass Health.

Skylight clinical leader Ariella Moscoso says they would welcome any funding for counselling for children and their families struggling to cope with life with a chronic illness or disability. She says they often see families surviving the trauma of a sudden disagnosis.

“Funding is a big part of not being able to continue to get ongoing support. Not being able to cover the cost of ongoing support for their children is hard for families.”

Counselling can be a huge help for many, she says. “You go through a period of adjustment after diagnosis, there’s grief and learning how to cope and learning ways of living. All of that can be very challenging. Accessing mental health support to cope with the grief and adjust to the change is fundamental. Having the government providing funding for that would be ideal.”

Increase the travel assistance scheme funding which has been unchanged since 2009.

“When our daughter had open heart surgery, we all travelled together as a family to Auckland - as you can imagine it is very difficult for one parent to be home with our son and the other to be in the hospital with our daughter alone. That means driving is reimbursed by the kilometre, or if we all flew, only my daughter and one support person’s flights would be covered.”

The National Travel Assistance Scheme helps parents who are referred by their specialist to see another specialist, and need to travel long distances or travel frequently to get support. The specialists must both be part of a government-funded health and disability service. It is set at 28c per kilometre and $100 per night for accommodation. To put that into context, the current 2022 IRD mileage rate is 83c per kilometre.

I asked Health Minister Andrew Little if he would support this and he said: “Responsibility for both delivery of the National Travel Assistance Scheme and the NTA policy formally transferred to Te Whatu Ora – Health New Zealand on July 1 this year. It and Te Aka Whai Ora – Māori Health Authority will be undertaking work to ensure that all New Zealanders have equitable access to hospital and specialist services. While this work is still being scoped, it is likely to include reviewing the mechanisms that support New Zealanders to attend specialist appointments, such as the National Travel Assistance Scheme and any funding required to support equitable access.”

There’s obviously a lot more things we could do, I can’t include them all - but I will continue in this series to share what families of disabled children need and what they’re crying out for.

I hope that by sharing these ideas we can discuss them and make progress so no children are left behind and no families struggle unecessarily.

The community is strong and there’s great care for each other - I know that those outside of the community also care. So let’s raise our voices and see what can be achieved through pushing for more support for our tamariki.