Families ‘hung out to dry’ by new restrictions on disability support

Wednesday, 20 March 2024

Sarah Hinchey will no longer be able to afford psychologist sessions for her autistic daughter Olive, 13.

A mother with two autistic daughters - one at risk of self-harm - says she can no longer afford psychology sessions after the Government announced funding cuts without consultation.

The family is among thousands reeling from Monday’s news of changes to funding relied on by parents and carers of disabled people, including for respite items, travel related costs for carers and whānau, and purchases to give carers a break.

Families were not consulted before the changes were announced by Whaikaha, the Ministry of Disabled People.

In a Facebook post, Whaikaha said there was “increasing pressure across the disability support system”. It received $2.2 billion of Government funding annually to provide support for almost 50,000 people and fund equipment and modification services for 100,000.

Sarah Hinchey found out her funding would be cut after being tagged in a social media post.

Hinchey says she’s trying to come to termswith the fact both her daughters will no longer be able to access the support they need.

After Hinchey found self-harm letters in 13-year-old Olive’s bedroom, she knew she needed help. With autism and selective mutism, Olive was struggling at school. She once sat in class a whole day with a broken arm without saying a word.

A GP gave Hinchey a “flat no” when she asked for help accessing a counsellor or psychologist, because Olive was not in immediate danger.

Whaikaha funding allowed them to access private psychology sessions, which otherwise would have cost $230 a week.

Daughter Anna, 15, also had autism and struggled in class, unable to read properly, but was turned down for speech therapy. Whaikaha funding allowed her to get help privately.

The funding changes meant neither Olive nor Anna would get that support any more, Hinchey said.

“You are not able to buy support when funding for that support has been turned down by (or on behalf of) the responsible government agency,” Whaikaha’s website now states.

Minister for Disability Issues Penny Simmonds says funding changes are in response to a “forecasted overspend” of Whaikaha’s budget.

Whaikaha deputy chief executive Amanda Bleckmann said costs kept increasing, and this “is a decision [the ministry] has had to make”.

“We need to ensure that … funding is directed at the person it is meant for, and prioritised to those that need it the most.”

Disability Issues Minister Penny Simmonds said it was not about saving money, but about dealing with a forecast 10% budget overspend.

“Support for disabled people will continue to be maintained, however, to manage the current situation Whaikaha will be working with providers on how support can be prioritised to those with the greatest need.”

Simmonds said funding had been set to run out in “days” - although she first knew of funding issues back in December. The budget could not be increased “because the Government’s coffers are not an endless open pit”.

“We need to pause and sort out what that criteria was. And so I think, really, there's been a swing too far from no flexibility to total flexibility,” she said.

Tania Campen’s 8-year-old son had severe anxiety and autism and could not be left with anybody except her.

They lived rurally, so she had to care for him 24-7. Sometimes she did not sleep.

Hinchey says the way Whaikaha made and announced changes to funding felt “underhanded and sneaky”.

Whaikaha funding meant they could access occupational therapy and buy things like puzzles or a tablet to help regulate his emotions. It gave Campen a chance to get groceries or play with her three other children.

She had no idea how she would cope without the funding.

“We aren’t coping now.”

A petition pleading for Whaikaha to re-evaluate the changes already has over 7000 signatures.

Marsha Marshall, chief executive of disability support organisation Manawanui, said even in the most restrictive days of disability support funding, expenses such as carer travel costs were still allowed. The new rules stopped such funding.

Labour disabilities spokesperson Priyanca Radhakrishnan said the Government’s communication was confusing and acted to “blind side” families.

“A number of people will have their accessibility plans worked out for an entire year - what is the implication for them?”

Whaikaha said the changes - coming into effect on March 29 - were temporary while it worked through future funding.

For Campen, the word “temporary” was not good enough.

“Sometimes this is like being tortured, sleep deprived and not able to live any form of life apart from [my son]. How long do [decision makers] think they could manage that?

“We’re not rich, we can’t do this ourselves and you’ve hung us out to dry.”