People with disabilities are waiting longer to have their needs assessed, and others already through the system say it is inconsistent and confusing.

More people are being referred for needs assessments, and since 2020 they are taking twice as long to be seen.

Data provided to Newsroom by the Ministry of Disabled People Whaikaha shows that in 2019 and 2020 the waiting time for an assessment after being referred was 16 days. 

In 2021 that almost doubled to an average of 30 days and last year peaked at 47 days.

The first six months of 2023 show wait times have reduced since then but still remain high at an average of 31 days. 

The number of referrals are also increasing with about 760 people referred on average each month in 2019 and 2020, lifting to 830 a month in 2021, 900 in 2022 and for the first half of 2023 1000 people a month were referred. 

A needs assessment is required to qualify for publicly funded support, such as respite, personal budgets and other support services. 

There are dozens of Needs Assessment Service Coordination agencies – also referred to as NASCs – contracted by Whaikaha and Te Whatu Ora to undertake the assessments and report back.

But as well as longer wait times, people who are navigating the system say it’s anything but straightforward and the service differs substantially depending on which agency has been engaged.

Marise Lant is the full-time carer of her two grandsons, both of whom have non-verbal autism. 

“I had four assessors. One that took 15 minutes over the phone to assess two mokopuna takiwātanga … and the assessment was based on that. Hadn’t met us, hadn’t come out, never met the boys. 

“And when it came back, it was far short from where it should have been, it was a couple of paragraphs long. There should have been far more done and I found that out when I had the second assessment … now I’m on the fourth.”

Lant’s grandsons were first assessed in 2020 but it is only this year she finally has an assessment that allows for a decent level of funding and support.

‘As New Zealand’s population grows there is increasing pressure on the Needs Assessment Service Coordination network. This is why in January 2023 we increased annual funding to the Whaikaha NASC network by $7.15 million, to support measures such as increasing staff numbers and capabilities’ – Whaikaha Deputy Chief Executive Amanda Bleckmann

 She was told at one point that their needs equated to 11 days respite per child over the course of a year – that’s less than one day off a month for Lant, who looks after them 24/7.

“I had to challenge it and it was only reviewed after a formal complaint … and then they only came out and reviewed again after the formal complaint and came back with 104 days per child.

“Now I’m wondering … the boys’ situations haven’t changed … so how did it come from the length of 11 days, now all of a sudden we get 104 days?”

Newsroom has heard from a dozen other families with their own tales of wait times and quality concerns after their needs assessment experience.

Whaikaha Deputy Chief Executive Amanda Bleckmann said there was increasing pressure on the needs assessment network. 

“As New Zealand’s population grows there is increasing pressure on the Needs Assessment Service Coordination network. This is why in January 2023 we increased annual funding to the Whaikaha NASC network by $7.15 million, to support measures such as increasing staff numbers and capabilities.

“We expect wait times will reduce as the NASC frontline capacity increases.”

She said Whaikaha, which has been in place for just over a year, wanted to see better consistency across the various needs assessment providers.

“We are supporting the Needs Assessment Service Co-ordination Association to engage with its members, develop a standardised induction programme, and consider new approaches to individual needs assessment where necessary. 

“Around New Zealand, NASCs are taking steps to improve people’s experience when referred to them. 

“In addition to what we’ve mentioned above, this includes the establishment of community liaison roles, partnering with Māori and Pacific-based services, and developing a national safeguarding approach i.e. working with Whaikaha to prevent violence against disabled and at-risk people.”

The Needs Assessment Service Co-ordination Association represents the agencies. Its executive director, Simone Newsham, said there was work to do to improve the system.

“To bring wait times down we would really encourage Whaikaha to work with NASCA to simplify the process so it is easy to understand for disabled people, their whānau and the workforce using the system, develop new systems that make administration more effective and provide better data on how well the system is performing and ensure NASCs are adequately resourced to respond in a manner aligned to Enabling Good Lives principles.”

But it’s not just the disability sector that relies on needs assessments to get support, there’s also mental health and the health of older people.

These other two streams are funded by Te Whatu Ora, but no data is kept on referral volumes or wait times.

‘Families are trapped in this big, huge vacuum of different organisations, and there’s no clear direction on where you’re supposed to go, you have to find out the hard way’ – Marise Lant

Te Whatu Ora Group Manager Mark Powell said the data was collected regionally but the method and reporting structures from each region varied significantly.

“As the health reforms bed in, we are working to ensure national consistency with NASC data and the reporting system. However, this will take time to achieve.”

He said there were some delays in assessments and service allocations, but “we are not aware of any significant concerns with the number of people on wait lists”.

He also referred to a “national service specification”, which would help create consistency of needs assessment services.

“NASC wait times are also affected by the national workforce shortage, which has been a well-documented challenge for the rest of the health system. There are a number of ways Te Whatu Ora is addressing this including the aged care service and funding model review currently underway.’

Lant said inconsistency and under-resourcing was not unique to the needs assessment system. 

She said the number of agencies involved made caring for her grandsons overly complex.

“We’ve already got the GP, then we go to the paediatricians, then we have to go to the children’s development centre who makes referrals to other organisations, including early childcare, and intervention centres, and it goes on.

“Families are trapped in this big, huge vacuum of different organisations and there’s no clear direction on where you’re supposed to go, you have to find out the hard way.”

She said the other problem was a lack of training and resourcing within all those other organisations as well.

“They’re supposed to be delivering services and they can’t deliver them – not all of them and many of the staff within the organisations on the frontline are untrained. 

“Families that are dealing with disabilities, we deal with a lot of things, if we’re in transitional housing or emergency housing we’re dealing with Kāinga Ora, we’re dealing with the Ministry of Social Development, Ministry of Education, we’re dealing with the health board, we’re dealing with a whole range of different organisations, but one thing is real clear – they cannot deliver the services that meet the needs of those families.”

She said the problem was even more acute for Māori and the Crown’s obligation under Te Tiriti o Waitangi were clearly not being met.

“It puts families at risk. Families cannot function if they don’t have the wraparound services and access to professionals.

“Because the stress has been enhanced and when the parents get stressed because they have to deal with all of these things, who’s there to look after the children?“The vulnerable and at risk could not be any more so than those [with] disability, and everyone forgets about them.”