Section 2: assessment settings

Matching services to need 

When you had your needs assessment done, did it do a good job of establishing the support required?

There were 1,183 responses to the question ‘When you had your needs assessment done (or for the person you support), did the assessment do a good job of establishing the support required?’

There were 752 responses to the follow up question ‘How well did the services coordinated to you (or the person you support), match the needs identified?’.

89% of respondents shared some degree of satisfaction with their service coordination.

Responses could be coded both positive and negative where they expressed satisfaction yet went on to describe a mismatch in their service coordination.

The reasons for this varied considerably and are detailed below.

How well did the services coordinated to you (or the person you support), match the needs identified?

10% of respondents shared how the coordination of their services had been a good match, but this was no longer the case. For some this was because their circumstances had changed, for others it was because the supports had changed. This included the impact of the March 2024 changes to purchasing guidelines, but also because of the increasing cost or reduced availability of services.  

Really well, prior to the March 18 changes. Now we are struggling with the lack of sensory purchases - which has ironically meant a significant change to behaviour from our disabled person. This led at our recent review to being assessed as needing a significant raise in our funding allocation, so we can employ caregivers for longer, to help with the significant behavioral changes. - Family/Carer, Canterbury (including Chatham Islands) 

4% of respondents provided feedback on system level issues, such as regional inconsistencies, unfairness between different government agencies’ services and the impact of policy decisions.

Similarly at a high level, 6% of respondents highlighted the need for holistic approaches across processes, policies, and services which considered a disabled person and their family/whānau in their entirety, not siloed into parts. This reflected EGL principles.  

Very poorly because the NASC couldn't arrange for all supports I needed. It was due to restrictions in their government contract. Due to this I had to go into care rather than continuing to live on my own. The NASC Assessor, their manager and other people involved with my care all pushed for it but it couldn't be  done. Even Whaikaha later said I 'fell through the cracks. - Disabled person, Waikato 

Communication was raised by 18% of respondents as a critical component in matching needs to services.

Respondents stressed that they needed to be heard and have their input affect their outcomes. Information needed to be accessible, available via multiple mediums with a preference for in-person, relational communication, and follow-ups. Related to this was the ability for respondents to access information, a topic raised by 2% of respondents. Respondents highlighted the importance of transparency in rules and being able to make informed decisions upon receiving and understanding clear information.  

NASC identified the needs of the disabled person/s and family to a reasonably level, this could have been improved by also providing information on and access to further servicers such as education, group support, peer support and counselling options for both the disabled person/s and family members. - Carer, Auckland 

4% of respondents provided feedback on workforce shortages across regions, unavailability of skilled or specialist staff (and staff with NZ Sign Language (NZSL) proficiency).

A couple of respondents raised the additional burden on migrant workers, who experienced issues with Immigration NZ and poor pay, reducing their capacity and increasing staff turnover due to unsustainable employment conditions.

7% of respondents provided feedback on workforce capability: raising issues with language and cultural barriers; insufficient disability knowledge; or ableist attitudes and lack of understanding.  

It would be good for assessors to be trained about and experienced with the experiences of the specific disability (autism in my partner’s case). This would enable them to pro-actively make appropriate suggestions and queries, especially in cases where a disabled person is newly assessed and may be unfamiliar with both their own needs and the types of support available. – Family member, Canterbury (including Chatham Islands) 

People outlined how providing a service coordination that matched identified needs relied on an accurate understanding of the disabled person and their family’s/ whānau circumstances. 11% of respondents provided insights into how the assessment experience shaped their outcomes.

Respondents shared instances of inconsistencies between regions and between family members with the same disability; cultural appropriateness of assessments; and feeling overwhelmed and unsupported to understand the process.

4% of respondents shared their experience of reassessment and review frequency, including whether more or less assessments are required depending on their disability.

8% of respondents highlighted the challenges they experienced with assessment timelines, particularly where there were delayed follow ups and waitlists both to have an assessment and to access services following an assessment.  

I think they did a good job but the problem was I just didn't understand so much of what I was told. There was so much to know. Some of the words and terms they used I did not understand. I now do understand and consider the services did match the needs. - Family/whānau, Canterbury (including Chatham Islands) 

13% of respondents shared insights of issues they had with accessing services. Some respondents had not been allocated services which they needed, for some this was because the services were not funded through DSS (such as mental health support).

Some respondents had been allocated services but not been able to access these due to regional unavailability or long waitlists.

Others had been able to access services, but they did not meet their needs, either because of misalignment between staff and the disabled person and family/whānau, or because of the inflexibility of supports not meeting the identified needs.  

Also, realistically, you can't employ someone else to do personal cares, at different times of the day, when you live rurally. You can't ask your disabled family member to use the toilet only at certain times of the day!! - Carer, Northland 

11% of respondents felt that flexibility in service co-ordination was key to appropriately matching services to identified needs. This flexibility was visible where supports could be tailored and disabled people and their families could exercise choice and control.

However, poor flexibility in the allocation of services hindered the ability for services to meet identified needs.

Since the March 2024 changes to flexible funding, 18% of respondents found they have been unable to meet their assessed needs in the ways they had done previously. 

EGL has been the most empowering funding I’ve ever had. I get to decide what support best suits my needs instead of having that decided by an organisation that decides what’s best for everyone, often by people who have no lived disability experience. EGL is easy to use and simple to account for and super empowering. - Disabled person 

We have greater needs than that which we could be supported to achieve.  Even within the previous purchasing guidelines there were aspects of the support required that we would not be able to achieve - we need to be allowed to use the funding allocated in a truly individualised way and more funding not less.  There is also no proactivity within support services - we can't access services to enable us to sustainably care for our son so that we can continue to do so and make our situation the best it could be long term - it only looks at the short term. - Family/Whānau, Wellington 

Opportunities to improve coordination of services

What could improve the coordination of services to match your identified needs?

There were 403 responses to the question ‘What could improve the coordination of services to match your identified needs?’

3% of respondents highlighted the importance of disability knowledge and lived experience required to improve service coordination.

This knowledge was viewed as critical in shaping the policies and processes which facilitate service coordination, which 10% of respondents highlighted required improvement.

Respondents highlighted the need to improve end-to-end processes, improving coordination and addressing the current siloed approach. 

Having it all on 1 place. So the knowledge base is there and people aren't having to run around services and wait literally years on lists to be told this service can't help you but they'll refer to xyz. - Family/Whānau, Canterbury (including Chatham Islands) 

I cannot help but feel that the whole system is focussed on minimizing cost rather than maximizing wellbeing of disabled person. Supports are often offered when a situation has reached a crisis point rather than preventing it from becoming a crisis. The latter is often far more cost effective in the long run and less painful. - Family/Whānau, Auckland 

28% of respondents mentioned a mismatch between a service coordination and the availability of support, preventing the services from meeting the identified needs of disabled people and their families/whānau.

Availability of funding, services, and staff hindered disabled people and their families/whānau from accessing the services they had been allocated.   

Faster response times - I needed help with food prep, and I have had two friends with that need too, and all of us experienced a delay of at least one month to 3 months, before food prep assistance was able to be accessed - people seem to forget that we need to eat every day - a month is unacceptably long for some assistance to get in place. - Disabled person, Canterbury (including Chatham Islands) 

Families wait 12-18 months to be allocated a Connector. And the stop gap of 'Connector Support' are untrained admin staff. An unacceptable wait. - Service provider, Central 

Respondents wanted a stronger values-base underpinning DSS. 17% of respondents wanted a stronger person-centred approach to service coordination, where disabled people and their families were listened to, provided options, and were given time to understand and decide what would be best for them.

7% of respondents highlighted the need for holistic approaches to improve service coordination which consider the disabled person as a whole and include the family’s needs and perspectives.

3% of respondents also requested greater flexibility in assessments, funding, workforce options and service provision. 

Taking a more whollistic, cross-agency, cross-sector, life course approach, and considering the benefits gained. - Disabled person, Wellington 

Often clients report their choices limited by recommendations that do not actively support their needs or preferences, despite the some times obvious benefits. - Service provider, Waikato 

41% of respondents mentioned the central importance of interpersonal communication to improve service coordination.

Respondents needed to feel heard and empowered through access to the information they needed to make informed decisions. Communication had to be accessible and consistently available across multiple streams.

Respondents suggested a centralised information hub, written follow-up notes being shared, and a single point of contact like connector roles.  

I had to ask for Individualised funding- it had never been mentioned.  I have never been offered respite, even though at times we are desperate for a break.  I know families who have received all of this years earlier because they were in facebook disability groups, telling them what to ask for and how much.  They were told to ask for more at every yearly review.  They have children with similar needs, but with double or triple our care package. - Carer, Auckland 

19% of respondents mentioned a focus on workforce capability, where staff had the ability to carry out their role. Some respondents shared experiences of ableist, discriminatory, or abusive treatment from professionals within DSS and other government funded services.

They also shared experiences of staff having poor disability awareness and poor understanding of DSS, sometimes sharing incorrect information. A further 4% of respondents shared feedback on workforce capacity, where there were insufficient staff to provide services, sometimes resulting in temporary staff who lacked training, or no access to services.  

You get the answers you ask the question for. You need assessors who are qualified in the field and allow them to consider fully unhindered by policy. Give them education in assessment and develop appropriate tools to support quality assessments. With great information you will have great decisions and outcomes. - Family/Whānau, Waikato 

36% of respondents mentioned the assessment experience as being critical to match service coordination to needs. Respondents suggested flexibility in where and how the assessment is done, improving communication, and strengthening dual funding processes.

16% of respondents mentioned the length of time it took to get an assessment and access support due to backlogs and a lack of proactive action.

4% of respondents provided feedback on the frequency of assessments, some highlighting that it should not be required for those with permanent disabilities to be reassessed whilst others experienced changing needs over time with infrequent assessments resulting in unmet needs.  

My clients have waited for up to eight (8) months for agreed supports to be written & approved! By the time I get to see them, they are in need of much higher supports. What a waste of extra resources that could have been an easily prevented – Service provider, Central 

NASC was never proactive, didn't contact me on rollover dates until prompted. I have only had 2 in person visits in 19 years. Made inappropriate comments like 'there are people worse off than you' and 'he will never live on his own – Carer, Wellington  

The needs assessment process is a horrible deficit-based model. You essentially have to say that your much loved child (whose fault it isn’t that society does not support them) is ruining your life to access any support. The process is so horrible that I really questioned whether to even do it with my second child – Family/Whānau, Wellington 

Improving assessments

What can be done to improve assessments to establish the support required?  

There were 1,131 responses to the question ‘What can be done to improve assessments to establish the support required?’

6% of respondents spoke about the value of disabled knowledge and experience and the importance of consultation in decision making and governance.

21% of respondents shared feedback on the need for better policies and processes across the disability system to simplify, improve consistency, and support greater diversity of needs.

Suggestions included improving workplace standards and assessment processes, having 1 central NASC or inter-NASC peer reviews, and separating assessor and service coordinator roles. 4% of respondents mentioned the need for improved coordination and information sharing between agencies and organisations.   

Assessments need to be completely re-designed by disabled people who have experience in disability-led and inclusive research. Assessments should be based on international best practice, the UNCRPD, the NZ Disability Strategy, EGL, and the social/rights model of disability. – Disabled person, Auckland 

there needs to be interagency work between ACC, Te Whatu Ora, MOE etc. to make sure that each person's needs are met. So the situation where for example, MOE says DSS is responsible, and DSS says MOE is responsible for a particular need can’t happen. – Disabled person, Canterbury (including Chatham Islands) 

Communication to facilitate informed decision making was important to respondents. 5% of respondents mentioned the need for agencies to develop clearer processes and guidelines.

Suggestions included NASCs developing better understanding of different options and supports available, developing clear guidance on assessment processes and next steps, and providing examples and case studies on various processes.

3% of respondents talked about the negative impact of a lack of access to information, particularly where assessors would not have the relevant information or contact details or took inaccurate notes of the assessment. 14% of respondents provided feedback on the impact of insufficient communication affecting assessments.

Communication needed to be accessible. Relational communication was also seen as important with respondents highlighting the need to be listened to, have complaints acknowledged, and not be spoken about in their presence in a demeaning manner.  

Simplify processes to reduce stress and delays – Family/Whānau, Canterbury (including Chatham Islands) 

don't talk about the disabled person in front of them as though they aren't there. Talk TO them or if talking about them don't do it in their presence. – Family/Whānau, Waikato 

19% of respondents shared feedback on the impact of assessors’ capability to understand disabled people and their family/whānau needs. Respondents wanted assessors to have more qualifications or experience, greater understanding of disabilities, empathy, cultural sensitivity, and training to recognise unconscious bias.

7% of respondents mentioned workforce capacity, recommending more staff, especially connectors, better wages, and employing more disabled people.  

Our initial assessment was terrible.  The person doing it was very disrespectful to my son and didn't understand anything about his condition and was super condescending. There should be some understanding that we often have to go over this really traumatic story with doctors, specialists, counsellors etc, over and over again.   There is a lack of communication between all these people too. Our next assessment with EGL was amazing. Their attitude towards individualised funding was completely different, and they are really invested in the success and allowing them to thrive and recognise that they are not alone in this journey. – Family/Whānau, Bay of Plenty 

Training assessors in disability awareness and cultural competence is essential, as is incorporating feedback from individuals who have undergone assessments to enhance the process – Disabled person, Northland 

I would hire more staff to the NASCs with a reasonable case load to ensure that each case is given proper care. – Family/Whānau, Wellington 

4% of respondents mentioned their needs not being met because of the services available.

For some this was because of waitlists or language barriers, for others it was because the services were inappropriate, with 15% of respondents requesting greater flexibility and funding to access supports, often requesting the purchasing guidelines prior to March 2024 to be reinstated.  

As we had a great assessment no improvement I can see but what was agreed in the assessment can no longer be done now that flexibility purchasing has been stopped, this has created anexity and stress for all of us in this whanau. – Family/Whānau, Nelson/Marlborough/West Coast 

Respondents wanted a stronger values base underpinning the assessment process. 3% wanted greater flexibility both in how services are coordinated, and funding allocated, but also in how assessments are carried out and how support should change with the disabled person’s needs.

8% of respondents wanted a more holistic approach, which listened to and assessed the family/whānau as a unit. 15% of respondents wanted a person-centered approach which considered the individual’s needs and preferences in a way that was flexible to changing circumstances.  

Involving family members or support people in the process can provide additional insights, especially for those with complex need – Disabled person, Wellington. 

I would advocate for a person-centered approach that focuses on individual needs, preferences, and goals, allowing fr structured discussions that gather comprehensive information. Involving multidisciplinary teams of professionals, such as healthcare providers and disability specialists, would also provide a holistic view of each person’s situation. – Disabled person, Northland 

Some respondents requested a focus on strengths-based assessment. Respondents also suggested clarifying the criteria, expanding eligibility, and improving transparency in how the assessment criteria are applied.

4% of respondents mentioned assessment criteria, including how vague and strict they were. 11% of respondents shared feedback to improve the assessment experience. Suggestions included: 

• prior access to forms, assessment questions, templates, and examples
• self-directing the location of the assessment (in person, in home, online, phone, self-completed)
• assessors asking about and accommodating access needs prior
• allowing more time for assessments 
• clarification of timelines, processes, and requirements
• providing a connector who is consistently available 
• making the assessments more flexible and less of a tick-box exercise  
• greater flexibility around changing circumstances, particularly where needs are expressed differently on a day-to-day basis (particularly behavioural needs) 
• flexibility around the presence of children, particularly where children are being assessed and spoken about
• 9% of respondents spoke about assessment timelines, requesting more time to process information and needing shorter waitlists
• 6% of respondents mentioned the frequency of assessments, including whether more or less assessments are required depending on the disability.  

Actually get an assessment! I don’t mind and understand a wait list but I’m almost 6 years into this and still not even an assessment. EVERYTIME I ring I’m told you have to just wait your turn… made to feel like I’m supposed to curl up and die! Basically to just go away! – Disabled person, Nelson/Marlborough/West Coast 

We had one person visit to carry out an initial admission assessment then waited over a month for that to be reviewed and to be told who would be our key person. The key person kept telling us how busy he was. It took reaching crisis point and calling the manager to get any form of traction. From hospital discharge to start of support took 5 months and a hospital readmission... – Family/ Whānau, Canterbury (including Chatham Islands)

Making reassessments easier to understand 

Is it clear what the process of reassessment of services and needs is, and how it works?

1,193 people responded to the question asking if the reassessment process was clear, and 690 people responded to the follow up question 'What could be done to make it easier to understand?’

7% of respondents shared they were not aware of reassessments or reviews, or the process involved.

4% of respondents mentioned the importance of lived experience and disability awareness driving any changes to reassessment processes. 

I don’t know what this is or how it works which is indicative of how well it’s working – Family/ Whānau, Wellington   

15% of respondents shared feedback on the processes and policies required to improve reassessments. These responses requested changes to improve clarity, reduce bureaucracy, improve consistency both regionally and with the rules staying steady, and removing hurdles.

4% of responses also requested further information sharing and collaboration between organisations and agencies.

5% of respondents mentioned not knowing how to begin accessing services, particularly when their situation or needs changed.

This was connected to the purchasing guideline changes, where the March 2024 restrictions prevented respondents from meeting their needs in the ways that had done prior. 14% of respondents mentioned these recent changes and the ongoing need for further flexibility.  

Having all government departments on the same page about what disabilities someone has, what help they could get, and an app or website that the disbled could go to and know that all the agencies that they need are connected with them – Disabled person, Wellington 

Access to information was seen as an important method to improve the understanding of reassessment processes. 20% of respondents mentioned the importance of interpersonal communication focusing on clarity, timeliness of information access, and listening to disabled people and their families and whānau. 23% of respondents suggested developing transparent reassessment processes and guidelines.

19% of respondents provided feedback on how to improve access to information.

Suggestions included proactively releasing information in plain language and NZSL ahead of rolling out any changes and providing consistent messaging across multiple platforms.

The workforce was also seen as a factor in ensuring better information was made available and understood. 9% of respondents shared feedback on capability, suggesting staff should be more qualified, inclusive, knowledgeable, and culturally sensitive. A further 3% of respondents mentioned the need for hiring more staff.   

It's all confusing, there's little communication of who you're interacting with, what processes are happening etc. - Disabled person, Waikato 

 

A more culturally responsive approach – Family/Whānau, Taranaki 

Like assessments, respondents felt reassessments could be improved.

19% of respondents shared feedback on the reassessment experience, suggesting better follow ups, proactively providing information ahead of time, and addressing power imbalances between NASCs and disabled people and families/whānau.

 5% of respondents suggested making criteria more transparent and realistic with greater focus on needs over budget.

4% of respondents mentioned a need for more holistic approaches that consider wider support systems and work alongside family/whānau. Respondents also suggested including conditions such as FASD and long COVID, whilst ensuring autism remained eligible for support.

Focus on care and support, not treating individuals as burdens. Assessments should understand the whole person, their challenges, and needs for thriving – Family/Whānau, Canterbury (including Chatham Islands) 

I know it takes time but following up with the people that have these disabilities and really getting to see that they understand what is happening for them or to them or about them rather than them to say yes I understand when that absolutely have no idea I have done that myself on many occasions because I don't want to look like an idiot or that I don't understand sometimes it's hard enough just to read a simple document understand what it is a process of a reassessment May mean – Disabled person, Waikato 

8% of respondents mentioned assessment timelines and delays.

Respondents shared the uncertainty this created, particularly when reassessments and plans were not finalized before funding rolled over, resulting in supports being unavailable.

A further 8% shared feedback on the frequency of reassessments. Some respondents suggested that people with permanent disabilities should not require reassessments. Others experienced changing needs before they could be reassessed resulting in unmet needs. Some respondents suggested being able to request a reassessment if or when their needs changed.  

My frustration is that we have a daughter with a condition that does not improve and in most cases gets worse. We are frequently faced with re assessments asking us, "has she been able to find work" and stupid questions like that when the previous assessments clearly outline she requires 24 hour care. – Family/Whānau, Bay of Plenty 

Explain how they allocate a package. My disabled family members needs changed every year (as he grew) yet it took 6 years for this to be reflected in his budget – Family/Whānau, Wellington 

Many disabilities don't "go away" which could be better recognised by the system, which carries a burden of proof. This carries strain on disabled people, whanau, and on the health centre and network of professionals that are required to reconfirm needs – Family/Whānau, Canterbury (including Chatham Islands)  

8% of respondents shared the negative outcomes they had experienced due to the reassessment process, such as feeling unheard, confused, frustrated, overwhelmed, uncertain about the future, and sometimes traumatised.  

Daily we are seeing hopelessness, desperation and disabled people and whānau in crisis.  There is a lot of fear and mistrust. For this to improve there needs to be a shift from cost management and budget constraint to adequate funding – Service Provider, Auckland 

Stop treating it like a test for what can be taken away to save the government sectors money. The goal needs to be to offer support not take it away. These assessments are scary, we are afraid of them and that's sad and unnecessary. – Disabled person, East Coast