Paying for tax cuts by not funding insulin pumps and glucose monitors for disabled kids

Ministry confirms funding pulled for new insulin pumps & glucose monitors, raising carer fears of 'Dead in Bed syndrome'; Simmonds didn't tell Cabinet of funding halt designed to help pay for tax cuts

Abbott’s Freestyle Libre sensors allow continuous glucose monitoring (CGM). The sensor is applied to the back of the patient’s arm, with a thin filament under the skin measuring glucose levels constantly. But it costs around $100 per sensor and must be replaced once every 14 days. Photo by BSIP/Universal Images Group via Getty Images

TL;DR: Carers and parents of disabled children fear a funding freeze announced this week to help pay for tax cuts will leave those at home with diabetes more vulnerable to ‘Dead in Bed’ syndrome because of the de-funding of new insulin pumps and glucose monitors.

Carers of disabled people report a widening array of essential services and devices needed to keep them all safe, able to communicate and rested are being blocked from funding by Whaikaha - Ministry of Disabled People, including:

• devices to help autistic children and adults communicate such as special boards and tablets;

• diabetes monitors that allow carers to sleep through the night without having to worry about sudden death from a slump in glucose levels;

• Insulin pumps; and,

• Eye gaze systems to help non-verbal people who can’t move be able to communicate.

Pain of disabled funding freeze deepens

The pulling of funding for continuous glucose monitor (CGM) sensors that have to be replaced every fortnight at a cost of $100 each is particularly concerning for parents and carers, some of whom are also now not being funded for the accommodation costs of respite. See this RNZ backgrounder for more on the sensors, along with this Starship explainer for parents of children who use the sensors. See more here from Rebekah Graham via Dr Bex’s Substack, X and The Spinoff

One carer described their fears about what might happen to their child after funding ends for the sensors.

“These monitors allowed parents to sleep throughout the night knowing the monitors would alarm if their diabetic child's glucose levels dropped. Without these, parents need to wake two hourly to check their child's blood glucose levels or else they risk Dead in Bed Syndrome.

“Dead in Bed Syndrome is when a diabetic child's insulin levels drop and a parent doesn't see this has happened. They wake in the morning to find their child dead in their bed.” One carer commenting on the removal of funding for replacement sensors.

A spokeswoman for Whaikaha, Sharon Williams, confirmed yesterday the monitors could no longer be claimed for.

“The purpose of Carer Support is to support carers to take breaks that sustain them in their caring roles. CGMs may have been claimed for previously through Whaikaha funded carer support, as part of reducing carer stress and reducing the need for more intensive breaks. However, items that reduce the need to take a break are now excluded from being purchased through Carer Support.” Whaikaha senior communications spokesperson Sharon Williams.

(Updated March 25) Later, Williams said carers needing the glucose monitors could apply for funding through Te Whatu Ora.

“Te Whatu Ora also provides Carer Support.  As diabetes is a medical condition, most families will receive Carers Support funding from Te Whatu Ora.  The criteria announced this week only applies to Carer Support funded by Whaikaha.

“There are no changes to eligibility for Te Whatu Ora Carer Support. We recognise they disability system is complex, and we remain committed to improving this.” Amanda Bleckmann, DCE, Commissioning Design and Delivery

Pharmac also said on Friday it was moving ahead with procurement of CGMs, although it did not expect supplies to actually be available until an unspecified date later in 2024.

Messy and painful decision, and backlash

The suspension of new funding for disability services and devices without cabinet approval has blindsided both those in the disability communities and a coalition Government anxious to avoid being painted as overseeing a mean and nasty exercise in paying for tax cuts for landlords by cutting services for the most vulnerable.

Simmonds is not in Cabinet and signed off on the changes herself last Thursday. She then justified them on Tuesday by referring to carers using the money for holidays, haircuts and pedicures. The changes were not formally announced until the details emerged in a ministry email to suppliers.

Finance Minister Nicola Willis told Stuff this week the decision and announcement titled Purchasing Rules and Equipment and Modification Services (EMS) Update had surprised her and was clearly concerned about the reaction.

“The news this week was a surprise to me, I can also confirm I had a briefing today with the minister and Whaikaha to understand their funding situation and understand what is required from the Government,” Willis said.

She said the Government had always planned to increase Whaikaha funding in the next Budget, due out at the end of May. The question now was whether the Government could provide early funding.

“What I've been working to understand is how is it that the appropriation they received at the last budget hasn't been sufficient to get them through the financial year? Because obviously that's the key challenge,” she said.

Willis told Stuff this was “a critical frontline service” that needed more funding. Stuff Glenn McConnell

Simmonds was repeatedly questioned in Parliament yesterday as to why she had not made a request for extra funding. Hansard

Then vs now

Nicola Willis’ big tax-cutting Budget for 2024 due on May 30 is shaping up as the heir to Ruth Richardson’s ‘Mother of all Budgets’ in 1991, which traumatised a generation and cost the National Finance Minister her job two years later.

The difference is Richardson faced a genuine fiscal crisis and used it to reshape and denude Aotearoa-NZ’s social safety net. She flew to New York with her Treasury Secretary Graham Scott in January to beg Standard and Poor’s and Moody’s not to slash the Crown’s sovereign credit rating two notches, assuring the ratings agency she planned swinging spending cuts to return the Budget to surplus and start repaying foreign-currency debt that threatened to bankrupt the country if our currency slumped and interest rates jumped.

Back then, New Zealand’s public debt was mostly denominated in foreign currencies and prone to explosive increases in interest costs whenever interest rates rose and the New Zealand dollar fell. It meant that by 1990 more than 10% of export receipts had to be used to service the debt, which was denominated in short terms vulnerable to not being rolled over and with variable interest rates. New Zealand’s net Government debt in 1991 was over 52% of GDP, which was then nearly three times as high as Australia’s net debt/GDP and almost double the levels of the United States.

Fast-forward 33 years and Willis has also talked of Labour handing her ‘fiscal cliffs’ ‘budget timebombs’ and committing ‘fiscal arson’ to justify spending cuts, but the difference is Government has no foreign currency debt and borrows for long terms in New Zealand dollars via Fixed Interest Securities, which are bonds that pay a set interest rate until the bond matures. It means that changes in interest rates and the currency over the life of the bond make no difference to the Government. It has shifted the exchange rate and interest rate risk to the pension fund or bank that bought the bond.

Also, the level of New Zealand’s net debt is not only lower at 20% of GDP than the 52% reached in 1991, but is less than half Australia’s currentl level of 40% of GDP and less than a fifth of the United States’ level now of 102%.

The difference is Richardson’s swathes of cuts to the social safety were forged in the midst of a true fiscal and financial crisis for the Government, whereas Budget 2024’s cuts to disability services, school building programmes, public transport subsidies and potentially thousands of jobs is being done to mostly pay for tax reductions worth millions each year for rental property multi-millionaires.

Ka kite ano

Bernard