What can families like ours hope for in the 2023 budget?

Probably not much....

I have to say, it feels f*cking delusional to write this given - everything. But, here I am again talking about The Budget and the needs of the disability community (particularly disabled and medically fragile tamariki) - again, again, again. Because what else do we do? - Emily

Last year’s budget provided an investment of $100 million to establish a Ministry for Disabled People. Quickly, it was named Whaikaha - the Ministry of Disabled people. But has it helped?

The $100 million investment covered the establishment of Whaikaha and also supported the rollout of the Enabling Good Lives approach to Disability Support. Since then, we have had more statistics come through about what it’s like to be disabled in Aotearoa.

Disabled people are over-represented in all aspects of poverty-related statistics, including income and material hardship. Evidence shows that poverty affects many areas of a person’s life including housing, access to food, access to energy, information or communication, access to healthcare, transportation, safety, and participation.

Recent employment data [pdf] from the Welfare Expert Advisory Group and Ministry of Social Development suggests that over 50 percent of people on main benefits are disabled and 72 percent of unemployed disabled people want to work.

Tāngata whaikaha Māori adults are three times as likely as non-disabled Māori adults to indicate they do not have enough money to meet everyday needs.

At the 2021 budget, benefit increases for adult disabled people equated to $20 before tax, per week. This increase did not bring benefits up to levels recommended by the Welfare Expert Advisory Group in 2019. That happened last year in April.

There was no increase to the Disability Allowance nor the Child Disability Allowance*.

This is despite the fact that disabled children are more likely than non-disabled children to be in low income households. One in five disabled children lived in material hardship (20.4 percent), which was more than double the rate of non-disabled children who lived in material hardship (10.1 percent).

From - Why people with disability get caught in a poverty trap:

Disabled children are doubly vulnerable to poverty: both as children and adults. Disabled youth are twice as likely to leave school with no formal qualifications, and four times as likely to not be in employment, education or training. Disabled people and their families tend to be resilient and resourceful.

This great article, by advocate Amy Hogan who lives with cerebral palsy (CP) and mother-of-four and advocate Dr Rebekah Graham highlights how few people understand the enormous costs of disability.

“A core challenge is that many people without disability cannot fully comprehend the additional costs associated with disability, or the multiple barriers that people with disability face when accessing support that is available.”

Photo by Külli Kittus

One of those costs, is medical tech and medicines that are not funded by Pharmac.

Pharmac were given a $191 million increase to pay for medicines and other health treatments in the last budget. It was the largest of its kind. Yet it was still not even close to enough to address the catastrophic human toll of not properly funding Pharmac.

Around 3.77 million New Zealanders receive funded medicines. Since the last budget, Trikafta has been funded in a huge win for advocates who fought so hard for help. In a stage-managed roll-out - Pharmac (a government agency) - gave exclusive access to the news, not to survivors and their families but to news media who had given them positive coverage.

Despite the increase in funding for Pharmac, families are still at the mercy of an organisation that has a drug-buying strategy that disadvantages Māori, Pasifika, disabled people and those with rare disorders.

Yes, I pay GST on my son’s medical tech.

There is nothing more heartbreaking than being a parent who can’t afford to keep their child well. And that desperate struggle, is increasing.

If we have to pay for medicines and services for our tamariki, why is the benefit so low? If they want to keep the benefit low - how can they expect low income or even middle income whānau to pay for every medicine and service our child needs?

It is not tenable to have people trying to survive on such little money - fighting poverty and fighting a system that seems designed to break them.

Jacinda Ardern once said: "If you ask me why I’m in politics, my answer will be simple: children." And now she’s gone. Chris Hipkins says it’s all about bread and butter and not nice-to-haves.

I would say that giving our disabled and medically fragile tamariki and adults in our community the chance to live is not a nice-to-have.

Photo by Sigmund

In September, I talked about five things we could do to help disabled kids right now:

1. Increase the disability allowance immediately - The Child Action Poverty Group says disability allowances must be trebled.

2. Make supports like the child disability allowance and access to therapies automatic - This would save money on admin fees. For example, parents who receive the Child Disability Allowance have to regularly provide specialist reports to confirm that their child is still disabled.

3. Establish and set a rare disorder framework co-designed with the community and Rare Disorders New Zealand - There are around 300,000 New Zealanders, one in 17 people, living with a rare disorder - half are children.

4. Provide mental health support for whānau with tamariki surviving chronic illness and incurable health conditions - There has at least been progress on this with GPs in some regions able to provide a counsellor for six sessions per year for parents and carers suffering caregiver burnout.

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

I said then, something that I still believe: The community is strong and there’s great care for each other - I know that those outside of the community also care. So please, hold onto that. No matter how bleak it feels. Maybe I’m giving myself a pep talk here but I’m trying not to give in to hopelessness.

I was going to do live analysis at the Child Poverty budget discussion on Friday, discussing the impact on disabled tamariki - but I can’t do that because the Ministry doesn’t fund a teacher aide at the alternative school my son goes to on Fridays, so I have to go all day and be his teacher aide. Which means I can’t work, do advocacy mahi, or do anything really.

And, if that isn’t a metaphor for something, I don’t know what it is.

*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.