Section 1: overview of DSS

The role and purpose of DSS 

There were 1,317 responses to the question ‘What is the role and purpose of Disability Support Services in disabled people’s and their whānau/families’ aiga and carers lives?’ Views on the role and purpose of DSS varied substantially between respondents, with many people thinking DSS held multiple roles.

8% of respondents explicitly mentioned Enabling Good Lives (EGL), system transformation, or the United Nations Convention on the Rights of Person’s with Disabilities (UNCRPD) as the underpinning principles of the system or the aspiration and commitment the system is moving towards. 4% of respondents provided feedback relating to stewardship of the system, advocating at the government level to build inclusion and acceptance of disabilities within society.  

Enabling good lives. That is what the role should be and what we have come to understand as a community already after years of work. I really don't think it needs to be redefined or investigated - the work and understanding exists. – Disabled Person, Southern

To help people with disabilities and neurodiversity be accepted and understood. – Disabled Person,  Auckland 

15% of respondents highlighted the role DSS has in providing communication on available support and how to access it, including the services provided by other agencies and parts of society (such as community groups).

4% of respondents referenced the application of eligibility criteria and needs assessments. Some gave feedback on the importance of individualisation in assessments.

5% of respondents provided feedback on the safeguarding role of DSS to ensure there are sufficient services, delivered in a safe way to manage the risk of abuse and neglect.  

ideally: To assess individual needs of people with disabilities and allocation and distribution of funds and other supports based on these assessments. - Disabled person, Canterbury (including Chatham Islands) 

need support to ensure I am safe.....Since having support I am safe, happier and more able to do    things - I am supported and have more control of my life and a lot more options. I am happy now. Please don't take away the support I have. I won't cope. - Disabled person, Auckland 

Respondents provided feedback on the degree of involvement DSS should have in their lives. 43% of respondents felt DSS should make a partial contribution to disabled people to meet disability-related needs specifically.

20% of respondents thought DSS provided as good a life as possible to disabled people, providing individualised and fully comprehensive support. 17% of respondents thought DSS compensated for disability impact, ensuring disabled people have all the options available to non-disabled people.

8% of respondents thought DSS enabled access to community and mainstream supports. 

3% of respondents shared their opinions that DSS replaced mainstream options, particularly where mainstream options were not suitable or available to disabled people.  

To provide ANY kind of help a disabled person might need – Disabled person, Bay of Plenty

to support them to live meaningful lives and participate in society on an equal basis with non-disabled people – Disabled person, Bay of Plenty   

Responses also varied in how much support people thought DSS should provide carers, family and whānau.

37% of respondents felt DSS should provide care and supports to ensure carers were sustainable.

2% of respondents felt DSS provided support to enable family to participate in paid employment, similarly, 2% thought DSS was to compensate family carers for their work.  

For my family, it is the provision of respite care. My wife and I have suffered extreme exhaustion, stress and mental health challenges while caring for our autistic/ADHD son who is primary school aged. The funding that we receive allows us to get breaks. Without it, I think we would break down. – Family/Whānau, Wellington 

DSS should support carers to be able to live a good life too. We are often required to leave full time employment to look after our whanau and the stress of financial issues can be enormous. The amount of money carers save the Govt is enormous and we should be respected for this work – it is above and beyond what non-disabled children and takes a lot of time and energy to support. We also need to support our own health and wellbeing so that we can continue to provide quality support. – Disabled Person, Wellington 

19% of respondents shared their understanding that DSS provided funding so that disabled people could buy the support they need, delivered in the way they need it. 24%of respondents mentioned the services delivered by providers and funded by DSS. 

8% of respondents highlighted the role DSS plays in providing equipment and modifications to disabled people.   

Clarity of government’s role 

Answer	Percentage
No	74%
Not answered	3%
Prefer not to say	8%
Yes	16%

There were 1,343 responses to the question ‘Is the role of government agencies in supporting disabled people clear?’ 1,032 respondents then provided examples where they felt the role was not clear.  

Is the role of government agencies in supporting disabled people clear?

	Feel devalued	Not meeting needs	Gaps between agencies	Complexity & beaucracy	Lack of transparency in DSS	Experience of negative outcomes	Lack of workforce expertise	Reference to EGL
Carer	26	46		23	63	20	5	4
Community group	4	5	5	11	6	4		3
Disabled person	58	85	33	69	137	45	19	27
EGL site					1
Family / whānau member	93	160	41	148	217	85	36	30
NASC		2	1	4	3	1		1
Service provider	14	27	15	32	37	14	3	18

Respondents highlighted the lack of clarity around the role of government agencies in supporting disabled people.

28% of respondents felt there is unnecessary complexity and bureaucracy in the government DSS system, creating barriers to receiving support.  

Some highlighted that navigating the system to identify which government agency leads each service is complex and confusing. There is a lack of communication between agencies. Disabled people and their families/whānau often go to multiple agencies to receive proper support due to the siloed nature of government.

9% of respondents discussed the gaps between agencies where DSS will not provide support as it is expected from another agency, but the other agency does not provide what is needed either. 

Each government agency is siloed and doesn't communicate passed the walls they have created.  Splitting access to supports by label and not through human interaction – Community group, Wellington 

Over the years I could give so many examples of my daughter and her needs falling through the cracks and being shuffled between health / education / MSD and other government agencies. It is soul destroying, and we are a highly functioning family with the ability to navigate systems – family member, Canterbury (including Chatham Islands)

45% of respondents felt that there was poor transparency within DSS resulting from a combination of issues. Information overload and the lack of consistent information made it difficult for disabled people and their family/whānau to find and access the supports they need.

This was compounded by regional variation in the availability, resourcing, and delivery of DSS. Poor communication and lack of consultation with the community on the recent government changes made to DSS and Whaikaha was also outlined.

The changes earlier in the 2024 year left disabled people and their families/whānau confused in a system that was already difficult to navigate and understand. A further 6% of respondents discussed the negative impact that untrained frontline and support staff can have on the lives of disabled people. 

I have a PhD and yet I find it challenging to understand what is required – disabled person, Southern 

Changes are made suddenly and not via appropriate channels. The changes aren’t articulated in a way that is easily understood by disabled people and their families. Changing governments shouldn’t mean changing everything about how the support is given and expecting that everyone will understand these changes without appropriate explanation or consultation – Family member, Central 

32% of respondents believe DSS does not meet the needs of disabled people. Workforce shortages and financial constraints lead to long waitlists for support when it is needed more immediately. Inadequate and inflexible support plans decide what is ‘necessary’ support, while disregarding the disabled person and their family/whānau who know their situation best. This was seen as leading to needs not being met. 

The cutting of travel and carer support to travel for work /voluntary work is a good example of cancelling a service that leaves the disabled person with no support rather like cutting their legs off therefore leaving them a very limited, narrow life. What difference does this make whether the funding is used for travelling support or other services such as meals etc? it is to help the disabled lead a normal life – Family member, Northland 

19% of respondents felt disabled people are being devalued throughout society leading to inequitable outcomes. They felt undermined in their autonomy and dignity, particularly with the lack of consultation around changes to the system and restrictive funding models. A further 8% specifically reference or discuss wanting to see EGL put back into practice alongside the UNCRPD.

There is rarely consultation with the community and good programmes have constantly been delayed or discontinued. Enabling Good Lives is a good example. It was rolled out to a few and there has been regular promises of extensions that have not happened and now it seems to be being restricted – family member, Canterbury (including Chatham Islands) 

16% of respondents felt the current system had caused or contributed to their experiences of negative outcomes impacting their lives and wellbeing such as burnout, frustration, and inequity.  

When you have a disabled baby there is so many different agencies to contact and be apart of that it’s overwhelming. In my experience I was grieving for my child and the life I wasn’t going to have. The constant pressure to get all of this “help” organised was too much for my own mental health and wellbeing... My life is hard and only getting harder. I’m scared to contact you to ask for help. You might say no, you might withdraw what funding we have, you might dismiss how hard it is to be a parent my children – Family member, Wellington.

Opportunities to improve navigation  

How do you find navigating between different parts of government?

Difficulty level	Percentage
Very hard	41%
Hard	36%
Neutral	16%
Easy	1%
Very easy	0%
Not answered	1%
Prefer not to say	5%

1,408 people responded to the question ‘How do you find navigating between different parts of government?’.

A further 1,247 people responded to the follow up question ‘What supports would help make this easier?’   

What short-term actions, over the next one to two years, do you think would improve disability support services?

	Reducing negative outcomes	Reference to EGL	Flexible funding	Individualised support	Expand eligibility	Workforce expertise	Workforce with lived experience of disability	Better integration	Less talk more action	Structural change	More consistency	Consultation	Improved services	Valuing carers
Carer	26	13	50	11	5	25	2	8	0	13	32	10	17	33
Community group	3	4	4	1	0	8	0	2	1	7	6	4	10	1
Disabled person	56	50	76	31	17	67	11	37	5	53	113	33	54	16
EGL site	0	1	0	0	0	0	0	1	0	0	1	0	0	0
Family / whānau member	102	78	248	87	10	103	15	54	6	74	138	65	122	118
NASC	0	1	3	1	0	2	0	2	0	2	5	0	1	1
Service provider	11	16	16	5	2	21	1	16	3	25	42	12	20	5

5% of respondents provided feedback on their negative experiences engaging with the system, including exhaustion, the need to advocate for themselves, and a lack of trust. 11% felt the system would be easier to navigate if greater value was placed on the lived experience of disabled people and their families/whānau.

Some felt this would lead to a system that embodies empathy, respect, and empowerment in a culturally sensitive way. This approach would also recognise the permanence of disability for many and the diversity of experience. It would encourage greater investment into disabled people and their families/ whānau through the systems that support them.

A further 3% of respondents explicitly discussed the value of EGL in supporting disabled people and their families to better navigate different parts of the government.  

Let the client and their whanau be heard, let the egl principal be at the forefront of decisions – family member, Waikato 

People who are kind, patient, and committed to helping. Systems and criteria that are not degrading, or hostile to users or implemented in degrading or hostile ways – disabled person, Canterbury (including Chatham Islands) 

36% of respondents highlighted the need for better integration to improve navigation. Streamlining processes and greater agency coordination would improve the fragmentation experienced by many. Some respondents spoke of their experience with EGL pilot sites as exemplars in improved integration and shared data.  

Personally I've had multiple funding streams over the years. The best has been EGL, they have coordinated a package so less need to use multiple departments. They also know families at a deeper level to gain a clearer picture of needs and support that suit the disabled person and supporting family carers, having a coordination person works. Other departments are not Individualised to needs, more a tick box system, and always different people when contact is required, so they have no idea our situation – Family member, Waikato 

25% of respondents were in favour of centralisation to some degree. This varied from returning DSS to Whaikaha or the Ministry of Health (MoH), or centralising all disability supports into 1 agency. 

Some respondents suggested a single point of information, such as a website or hotline, with a further 12% suggesting a dedicated case manager for each disabled person and their family/whānau who would be equipped to provide information to navigate the disability system and access services.  

A centralized hub offering a one-stop shop for services would reduce confusion. Case managers or key workers could guide individuals through the system, while a unified application process would streamline access – Carer, Canterbury (including Chatham Islands) 

Many respondents (32%) felt communication was key to improving navigation. People outlined that communication should be accessible, readily available in alternate formats, with interpreters available as needed.

Communication should also be adaptable and available in diverse formats that suit the preferences of disabled people and their families/whānau.  

Get each Govt department to stop "passing the buck".  Services also do not overlap and many needs fall through the cracks. Also, tell people what they are entitled to in the way of help, don't continue to be gatekeepers of the Govt coffers. I have advocated in the disability world for over 30 years...simply because people generally find out what they are entitled to "by accident"....and always through other parents, not from the departments that are supposed to be there to help them. Facebook pages/advocates would not be necessary if you were doing your job of informing disabled people/families of their entitlements and how to use them – Carer, Northland 

Some respondents highlighted the importance of the workforce in supporting disabled people and their families to navigate the system. They commented that staff should be trained to navigate the system and to inform disabled people and their families about their entitlements.

Their workloads should allow them to spend time supporting disabled people in a variety of adaptable ways (such as meeting in person, possibly in the home, calling, or emailing depending on the preferences of the individual).  

Staff training in how to work with the disabled community in person and over the phone, how not to compare their own issues because its not the same. Personal experience of applying for SLP benefit was not great despite showing all documentation. - Disabled person, Canterbury (including Chatham Islands) 

A team that understands disability and treats clients with dignity and respect. A system that respects the rights of disabled people and provides what they require. A team that is fully resourced and can provide what they are contracted to provide. People with lived experience working with disabled people. - Community group, Wellington 

Improving DSS in the short term 

There were 1,356 responses to the question ‘What short-term actions, over the next 1-2 years, do you think would improve disability support services?’

What short-term actions, over the next one to two years, do you think would improve disability support services?

	Reducing negative outcomes	Reference to EGL	Flexible funding	Individualised support	Expand eligibility	Workforce expertise	Workforce with lived experience of disability	Better integration	Less talk more action	More consistency	Consultation	Improved services	Valuing carers
Carer	26	13	50	11	5	25	2	8	0	13	32	10	17	33
Community group	3	4	4	1	0	8	0	2	1	7	6	4	10	1
Disabled person	56	50	76	31	17	67	11	37	5	53	113	33	54	16
EGL site	0	1	0	0	0	0	0	1	0	0	1	0	0	0
Family / whānau member	102	78	248	87	10	103	15	54	6	74	138	65	122	118
NASC	0	1	3	1	0	2	0	2	0	2	5	0	1	1
Service provider	11	16	16	5	2	21	1	16	3	25	42	12	20	5

Of these respondents, 21% outlined some of the negative outcomes associated with the current system, such as disabled people experiencing discrimination, feeling blamed or devalued, being forced into unsafe situations, and experiencing poor mental health.  

Re-instate FLEXIBLE funding. In other words, using allocated funds in the best way that suits the disabled person and their whanau. To look after the carers who have been trashed on in recent months. Burn-out is not just a myth, and its getting worse.  - Family/ Whānau, Auckland 

Whaikaha needs to prioritize their funding allocation with respect to getting disabled people out of hospital when they no longer need acute care. Some people are remaining in hospitals for hundreds of days. Invoicing Whaikaha for these inpatient stays might get action as the waste of tax payer dollars is inexcusable. - Service provider, Central 

28% of respondents called for bipartisan support to provide additional funding and stronger planning for the system, more efficiency in the use of current funds, and a long-term commitment to the disability community.

Greater funding was seen as a method of valuing and respecting disabled people and families, enabling them greater certainty to be able to plan long term and reduce their stress. Many outlined that they have experienced shock and sometimes trauma with the sudden rollout of the March 2024 changes and have lost trust in DSS.  

Making sure that the service is reaching the people who need it, and keep it simple. Efficiency matters. - Disabled person, Auckland 

Increase funding to disability providers to provide consistent care investing in capable staff to increase the quality of service delivery. - Service provider, East Coast 

9% of respondents felt that DSS could be improved through greater integration with other agencies and greater flexibility. Respondents felt disabled people should have fair outcomes and equity of funding, regardless of whether their support was covered by the Accident Compensation Corporation (ACC), MoH, or DSS.

3% of respondents felt eligibility for DSS needed to be reviewed so that people with fetal alcohol spectrum disorder (FASD), chronic fatigue syndrome (CFS), attention deficit hyperactivity disorder (ADHD), and other chronic and neurological illnesses and disabilities should be covered.  

To improve disability support services in the short term, we should focus on making existing pathways more accessible, streamlined, and genuinely available. The pathways outlined in policy should be practical, easy to navigate, and responsive to the real needs of individuals seeking support. - Family/Whānau Auckland 

More compassion for people with illness and disability approaching agencies, being aware a person may not understand what they are entitled too or understand what you even are giving them in the way of paperwork. Make a start fixing the inequity between acc and people with serious illness who are treated so differently in supports and entitlements no one wants to get sick or causes it just like an accident so why they are treated differently also people with serious conditions like motor neuron and Parkinson’s and multiple sclerosis should not have to reapply every two years for the supported living payment when it’s obvious and paper work is supplied from medical staff that they are only going to deteriorate it adds massive stress to them when they are so sick. - Carer, Auckland 

13% of respondents felt that structural reform was required. A few suggested shifting the administration of DSS back to Whaikaha. A couple of people thought DSS should sit with the MoH or the ACC.

Respondents felt agencies and providers should be accountable for delivering value for money and needed to reduce the bureaucracy in the system. Respondents’ suggestions included increasing workforce capacity, providing an app/online platform, or a centralised hub/one stop shop.

Resinstate flexibility in purchasing. Increase child disability allowance. Move DSS back to whaikaha and properly fund Whaikaha. Make whaikaha the one stop support centre. - Family/Whānau, Wellington 

Make sure ALL staff are trained to sing off the same song sheet. Employ people who live disability and understand families. Reduce fluffy ways of collecting date and reduce the number of appointments. Families are busy and don't want 4 appointments with a connector each year to roll over a funding allocation. When the home situation is NOT going to change then set the allocation roll over to 3 - 5 years like it used to be. Thus reducing expensive Funding staff time. Help families with the correct information when they need it. This will reduce unnecessary mistakes leading to overspending. So, the message is to set up streamline, accurate informed systems to reduce wasted staff hours. - Carer, Central 

12% of respondents mentioned EGL and UNCRPD as important guides in improving the system.

These respondents called for the continued rollout of system transformation and taking an outcomes-led approach to supporting disabled people and their families/whānau.

10% of respondents felt that DSS processes and services should have greater adaptability to be tailored to disabled people and their families/whānau and understand the diversity of disability.  

Return control to us and put other checks and balances in place. Don't punish all of us when some either misunderstand or abuse the system. There will always be those. after all, you don't penalise all motorists just because some drink and drive. We absolutely must have control over our own lives. - Disabled person, Central 

But for the most part, creating as much flexibility as possible and putting the funding directly into the hands of disabled people and caregivers of disabled people, would give decision making and responsibility to the service users, allowing them to overcome as many barriers as possible whilst also saving the DSS an enormous amount of money. - Disabled person, Auckland 

13% of respondents felt that family carers should receive better support through dedicated funding (separated from support for the disabled person), more respite providers, and flexibility around respite supports. 

Flexibility with respite should extend into how respite can take place, where respite should happen, and making additional forms of respite available. For example, increasing in-home respite options through purchases to help the disabled person in ways that enable the carer to take a break.

The previous purchasing guidelines were seen as providing respite in ways that supported carers to continue their work sustainably.

A further 29% of respondents highlighted the value and empowerment of previous flexible funding rules. These rules were seen as demonstrating trust in disabled people and their families to know what was best for them and were adaptable enough to provide this. Respondents shared their frustration with the tightness of the new rules and highlighted that reintroducing the previous flexibility would improve DSS.

Respondents provided examples of supports they could no longer access through flexible funding, such as a wheelchair they could use outside their home and sensory items that had similar cost value to those on the approved list but better fitted their child’s needs.  

Change your way of looking at a disabled person as an individual- they are woven within whānau who care for them but also need a break. Let's main carers get a night away in a hotel occasionally so they can sleep all night twice a year. Realise that we live complicated lives and a one size fits all approach does not work- coming from a mum of two kids with disabilities who are VERY different in need and what works. - Family/Whānau, Canterbury (including Chatham Islands) 

Re-instate funding so that people with disabilities can live a full and happy life. Stop expecting families to be all and everthing. - Family/Whānau, Auckland

17% of respondents felt that, in addition to improving flexible funding, other services also need to be improved. There needs to be more availability and access to services contracted by DSS.

Poor access to quality residential spaces and lack of support in schools were of particular concern. Processes needed to be timelier from initial contact, to assessment, to outcome and delivery. Respondents also reference poor services provided by other agencies, such as long wait times for diagnosis, therapies, and specialists, which created negative and life altering outcomes. 

More funding for Residential Care (housing and carers) - Family/Whānau, Auckland 

Support needs to be more accessible, first and foremost. The amount of people struggling to get diagnosed is not okay, especially as adults when funding is not really there for neurodivergent diagnosis. This is urgent. - Disabled person, Waikato 

17% of respondents felt the DSS workforce needed to have greater knowledge of disability and how to navigate DSS systems, with a further 2% wanting to see more disabled people working across all parts of DSS, including in leadership roles.

Some people wanted connector/navigator roles extended across the country, where case managers were assigned to be the single point of contact for disabled people and their families/whānau. Staff should support disabled people, instead of experiences where respondents felt staff were passing the buck or questioning the validity of the disability.  

Improve accessibility for Deaf Community. Centralise and streamline services. Train staff continuously on Deaf Culture and basic sign language. increase awareness of Disability especially Deaf community- not enough awareness there. Always book at NZSL interpreter for a Deaf Person. - Disabled person, Auckland 

25% of respondents wanted greater consistency across DSS through improved availability of information and greater transparency in entitlements and service provision. Open and accessible communication was suggested to create greater transparency.

Respondents felt equality was an important outcome which could be achieved through ensuring the application of the same clear system rules in all parts of the country. Some respondents felt the loudest people, or those who know how to navigate the system received support more than people who did not complain or know what they were entitled to. 

More fairness in the support packages that are provided. Recently the loudest parents have received the biggest packages & the families that don’t want to complain about their disabled child, became invisible with very small packages. - Carer, Auckland 

Clear transparency - what you can and cannot access. Clear communication - what funding can be used for. Inter-agency communication and sharing of information. Holistic approach. - Family/Whānau, Auckland 

9% of respondents highlighted the need for genuine consultation with disabled people, family/whānau, and service providers. Longer timeframes are required for engagement, to enable wider reach.

Longer timeframes also provide more time for people to respond, with people with intellectual disabilities in particular benefiting from this. However, 1% of respondents expressed fatigue and frustration at the frequency of consultation in comparison to the lack of substantial system change.   

put it back the way it was during covid, or even just before covid, give back the individual choice as each person's disability is different, bring back the enabling good lives to the community as it was working for us, see the not everyone who has a disability fits into one square or oblong box. they all have some similarities but live and daily struggles are different and living circumstances are all different. so go back to case by case and support us with dignity and compassion, and treat us as you'd like to be treated.- Family/Whānau/East Coast 

More funding obviously, as the service and system is and has always been extremely under-funded. Why not continue to support the services that people need rather than watching them fall away with the lack of funding being made available. Don't bother talking anymore just do something positive for disabled people as a whole, not continue down these pathways to impoverished and lonely hell for many. - Disabled person, Auckland 

Short-term actions to help better manage the cost of disability support services to the Government 

What short-term actions, over the next 1-2 years, do you think would help better manage the cost of disability support services to the Government?

	Flexible funding	Undo March 2024 changes	Reduce eligibility	Allocate lower levels of funding	Cap numbers	Reconsider government funding priorities	Insufficient funding in wider disability system	Early intervention	Workforce expertise	Workforce with lived experience	Better service integration	Better assessment	Less talk more action	Structural change	Consultation	Reduce negative outcomes	Reference to EGL	Recognise Carers	Government to ensure funding is well spent	National Consistency
Carer	29	2	9	5	0	36	5	6	4	1	13	4	2	15	6	10	2	14	14	3
Community group	6	0	1	0	0	8	3	2	3	1	3	0	1	2	1	0	1	0	2	3
Disabled person	47	5	9	8	1	126	23	28	18	13	39	14	4	39	7	11	11	6	38	26
EGL site	1	1	0	1	0	0	0	0	0	0	0	1	0	0	0	0	1	0	0	0
Family / whānau member	139	16	32	23	1	240	35	48	34	8	57	26	8	76	30	32	19	51	79	43
NASC	2	1	1	0	0	2	0	1	0	0	3	0	3	1	0	0	0	0	2	2
Service provider	18	2	0	9	0	26	4	9	7	1	19	6	4	12	4	4	0	7	12	12

1,177 people responded to the question ‘What short-term actions, over the next 1-2 years, do you think would help better manage the cost of disability support services to the Government?’

Of these respondents, 21% recommended more flexible funding as an approach to help better manage the cost of DSS to the Government. It was emphasised that empowering disabled people and family can lead to more efficient, person driven use of funding.

Suggestions for this included increasing flexibility of funding, fewer rules, and reducing hosts’ power. 2% of respondents recommended undoing the March 2024 changes and bringing back respite for carers. 

Increase flexible funding again. Let each disabled person decide how to use their funding. Better off having smaller allocated budgets than making it so restricted that the individual can't access the budget they have. I would much rather have less funding per annum and actually be able to access what I used to use my funding for. – Disabled person, Wellington 

5% of respondents recommended ensuring high needs people are prioritised by reducing eligibility and creating stricter criteria for access to funding. A further 4% recommended lowering the levels of funding via approaches such as capping the funding in packages at a maximum amount or means testing/reducing funding based on income.

I could guarantee a decent portion of those receiving funding would happily take a cut just to be able to use their funding in a way that suits the needs of the disabled person and money is saved as people opt out of higher funding rates to access it. – Family /Whānau, Canterbury (including Chatham Islands) 

In contrast, 37% of respondents recommended the Government re-evaluate its funding priorities. Respondents outlined how inadequate funding leads to inequities across the system and impacts negatively on the dignity of disabled people.

A further 6% believe current funding is insufficient for the wider disability system, e.g. mental health, and education services. A further 8% emphasised the importance of early intervention and early investment, including providing more funding to improve outcomes long-term. 

The mark of a society is reflected in how we care and support our most vulnerable. The disabled community have historically always been at the margins and financially never truly supported. The government need to seriously reallocate funding to meet this need. If those affected by disability who receive ACC funding can access increased compensation, then we fundamentally have a huge discrepancy between those who are born disabled or become disabled through aging, etc. Many family carers (ourselves included) provide hours of unpaid and invisible support. I feel that this question in itself is very disrespectful. – Family / whānau, Auckland 

6% of respondents recommended improving workforce knowledge and experience of staff within the DSS system and promoting the navigator role. A 2% recommended utilising a disabled workforce with lived experience of disability.

4% of respondents suggested better consultation characterised by genuine listening and transparency.

2% were disappointed with the lack of action following consultation. A further 3% specifically referenced EGL and/or UNCRPD. 

Listening to disabled community groups and hiring disabled policy makers to ensure that the government is getting us what we need, not what able-bodied people think we need. – Disabled person, Wellington 

11% of respondents recommended better integration across government of DSS and non-DSS services. A further 4% expressed the importance of assessments being connected to needs for both what is being assessed and frequency. 

Better funding formulas - you can't manage a budget when the allocation of that budget is largely done on guess work and funding formulas that are decades old. – Service provider, Nelson/Marlborough/West Coast 

Cut back on Needs assessments ONCE THE INITIAL ASSESSMENT IS COMPLETE. – Family / Whānau, Wellington 

12% of respondents recommended structural reform by returning DSS to MoH or Whaikaha. Some felt that agencies delivering funding need to be value for money, reduce highly paid management, have less bureaucracy, and better use of technology to drive efficiency. 

Return management to whaikaha and fund their budget appropriately. – Disabled person, Wellington 

5% of respondents discussed negative outcomes where current DSS settings have led to disabled people in unsafe situations, discrimination, and burnt-out carers. A further 7% highlighted the need to value carers by providing better support, recognition, and respite. 

Supporting families who are caring must be so much cheaper than putting people with disabilities into full time care. Remember this. When a family is coping and thriving the person with the disability has a natural support network with countless unpaid hours of relationships, support and activities. Funding can tip the balance between coping and not - coping. It's not designed to reimburse every hour! – Family / Whānau, Nelson/Marlborough/West Coast 

Disabled people take a great deal of care, and all of that money goes back into the economy, paying people as carers, respite or activity providers. To save money - allow us to get the GST back on carer agency fees. – Family/Whānau, Auckland 

Improving DSS in the longer term 

Longer term, what changes do you think would help improve disability support services?

	Communication	Flexible funding	Expand eligibility	Workforce expertise	Disabled people led	Better integration across government	System funding	Less talk and more action	Structural change	Consistency	Consultation	Improve Services	Value carers	Reduce negative outcomes	Reference to EGL
Carer	6	26	7	14	11	9	23	3	8	20	4	31	19	3	5
Community group	4	5	3	5	4	6	5		3	4	4	7	4		3
Disabled person	28	35	23	21	35	20	64	9	32	17	15	53	10	5	23
EGL site	1														1
Family / whānau member	75	105	37	69	67	62	146	12	56	60	41	151	72	13	43
NASC		2	1			3	2		2	3		1			1
Service provider	13	12	4	13	8	20	19	2	12	10	6	27	5	5	16

There were 1,222 responses to the question ‘Longer term, what changes do you think would help improve disability support services?’

11% of respondents explicitly mentioned EGL and the UNCRPD as the direction to move DSS in. Respondents also spoke about the Royal Inquiry into Abuse in State Care as a vital source of learning to prevent any risk of future abuse. Respondents emphasised the need to take a values-based approach underpinned by empathy, alongside evidence and embedding the social model of disability.

8% of respondents shared feedback on the need for genuine consultation with disabled people, family/whānau, and service providers. Disabled people needed to lead change and be consulted on definitions to ensure they are not ableist.

A further 2% of respondents mentioned their frustration at the poor consultation paired with inaction to resolve longstanding issues. 3% of respondents shared their experiences of discrimination, burnout, and living in unsafe situations due to DSS.  

A full commitment to Enabling Good Lives. Better resources for auditing and monitoring – Family/Whānau, Canterbury (including Chatham Islands) 

The recent apology from the Royal Commission means nothing if these people are not cared for in an appropriate manner. - Family/Whānau, Central 

Nothing About Us Without Us! Inclusion and co-design in all areas concerning disability. - Disabled person, Waikato 

Having consistently and really listening to the needs of the community and acting on it not just asking for feedback as a formality – Family/Whānau, Wellington 

30% of respondents provided feedback on the need for further investment and improved efficiency within DSS and the wider disability system. Respondents highlighted growing populations and the critical need for system planning to prevent sudden disruptions to critical services. Respondents shared feedback on current government priorities, suggesting that DSS needed sustainable funding which enabled earlier intervention and equity with MoH and ACC, driven by better data collection and aligned budgets.

Building on improved equity between those supported by different agencies, 14% of respondents highlighted the need for DSS and non-DSS services to work together, where government understood the diversity of lived experience and was able to adapt services accordingly.

Suggestions included 1 assessment for multiple agencies’ services and delegating the authority to DSS to allocate other funds and services.

A further 13% of respondents mentioned the need for structural reform, suggesting DSS be returned to Whaikaha or, for a small number of respondents, ACC or MoH. Respondents suggested better legislation for DSS and learning from international examples such as the National Disability Insurance Scheme (NDIS) or Scandinavian countries.  

Better access to the correct support. Assessments should be completed with the multidisciplinary team and across government departments to identify needs. Do not departmentalize. - Service provider, Nelson/Marlborough/West Coast 

9% of respondents mentioned changing assessment and eligibility settings. Some wished to see an expansion of eligibility to cover disabilities, which are not covered and reflect the diversity of disability. Others requested changes to reassessment frequency or reducing allocations for some lower needs’ groups.

13% of respondents wanted to see greater value placed on carers both in considering carers and families in assessments and providing better supports (including respite) to enable carers to sustainably provide care to disabled people. 11% of respondents highlighted the need for greater consistency geographically, with funding, and with policy changes.   

Expand support services to cover people with ALL disabling conditions. - Disabled person, Canterbury (including Chatham Islands) 

If natural supports are relied upon, adequate respite is essential to prevent burnout and potential neglect. Reliable access to respite services ensures natural supports remain sustainable and available. Additionally, caregiver pay needs urgent reform – Family/Whānau, Auckland 

16% of respondents mentioned the need for greater communication and transparency to improve understanding of DSS policies and processes. Guidelines and processes needed to be made clearer and easier to understand. Communication needed to be accessible and adaptable with respondents requesting closer interaction between staff and disabled people and their families/whānau.

Workforce knowledge and experience was seen as a key factor to improve communication and was mentioned by 13% of respondents. Respondents suggested staff needed a better understanding of DSS, disability knowledge, and the rights and needs of tāngata whaikaha and Māori. It was suggested a workforce development plan was needed to enact this.

13% of respondents recommended that DSS should be run by disabled people and those with lived experience of disability, emphasising nothing about us without us.  

Clear communication!! Stop cutting funding but do a better job of management...take off Freezing residential care for younger disabled people – Disabled person, Taranaki 

Closer interaction with family – Family/Whānau, Auckland 

Get new people who know what they are doing. - Community Group, Wellington 

28% of respondents shared feedback on the need to improve services contracted by DSS and honour the rights of disabled people and families. Suggestions included improving access to and quality of residential supports; culturally appropriate services; better utilisation of technology; and greater individualisation of services for disabled people and family/whānau.

Respondents mentioned poor wages and working conditions which contributed to workforce shortages and prevented access to services.

21% of respondents shared feedback on flexible funding, which was perceived to be empowering, efficient, and person driven prior to the March 2024 changes, with many suggesting a reversal of the purchasing guidelines. Some respondents emphasised the preference for choice and control over how they spent their allocation, even if it meant receiving less.  

A change in mindset from seeing disabled people as a "cost" for the "government." Part of this is recognising the costs the government saves by families taking on caregiving burdens. Recognition of the extremely individualised nature of the support that families need. - Family/Whānau, Auckland 

My health has improved, my connection to community has improved, I had freedom to recieve supports which benefited me the best ever, since purchases changes I feel very sad and more worried for my future, you scare me, I feel afraid about the future becuase of what is happening. The language being used, threats of cuts. Its terrifying to be vulnerable right now, leave our systems and flexibility in place – Disabled person, Northland 

Making DSS fairer 

What changes do you think would make disability support services fairer? 

	Focus on disabled person	Value carers	Flexible funding	Consistency	Improve services	Addressing barriers in other systems	Improve system settings	Reference to EGL	Expand EGL nationally	Expand eligibility	Consultation	Less talk more action
Carer	55	15	29	16	14	26	50	4	3	4	10	0
Community group	9	1	2	9	4	6	10	3	4	1	5	0
Disabled person	148	19	47	38	38	92	152	28	15	22	24	5
EGL site				0	0		1	1		0	0	0
Family / whānau member	247	79	127	72	70	151	213	48	25	11	41	4
NASC	3			3	1	4	2		1	0	0	0
Service provider	36	9	12	26	15	41	52	13	4	1	7	0

There were 1,237 responses to the question ‘What changes do you think would make disability support services fairer?’

Respondents emphasized the importance of focusing on the disabled person and their specific needs to make DSS fairer.

41% of respondents mentioned the focus of funding and support should be based on need, not diagnosis, catering to the diversity of disability. Increasing autonomy in decision making or supported decision making/representation was seen as instrumental in this.

Respondents emphasized that blanket rules do not work in this community where circumstances are highly individual and different for each family. Consistency with assessment practice is also very important as those with the greatest need may not be able to advocate for themselves as much as others.

A further 3% mentioned that eligibility for DSS should be expanded as disability is not black and white (e.g. including FASD, ADHD, etc.) 

Egl in every Region and listening to what people need not just the diagnosis as everyone is so different with there needs. – Family/Whānau member, Canterbury (including Chatham Islands),  

This may seem like it's not fair, but you can't make blanket decisions on something that really is highly individual. Fairness needs to come from empowerment of the person and their families, and accountability. – Carer, Bay of Plenty 

7% of respondents recommended that consultation with disabled people, family/whānau, and service providers would be key in making DSS fairer.

A further 18% emphasised the need for flexible funding for both disabled people and their family/caregiver because they know what products and services will work best for them.  

Consult with the disabled community and their carers more. Don’t think one rule fits all it does not. Slashing and burning funding rules to cut costs does not make anyone feel valued, rather more like criminals and not trusted. – Carer, Bay of Plenty 

If the funding is flexible and can be used to purchase community based, uncontracted support options then the support can be tailored to the opportunities available in the community. – Service provider, Nelson/Marlborough/West Coast  

13% of respondents emphasised the need for improved consistency across regions for services, NASCs, impairment types, and the overall ‘postcode lottery’ that currently exists. A further 12% specified the improvement of services in both availability and access nationally to services contracted by DSS. 

All NASC staff to have appropriate training. Take away the postcode lottery which has become worse since some NASCs are adding in their own rules to manage within their budgets – Family / whānau member, Auckland 

10% of respondents felt the validity and recognition of caregivers needs improvement, including providing more support for primary caregivers. 

I feel whatever I say would be disregarded. All Full time care givers should be able to get the slp it's absolutely exhausting and degrading being broke and having no quality of life while giving your all to make sure your youth don't kill themselves. – Family / whānau member, Auckland 

Respite for exhausted carers and an actually responsible wage for paying  someone to help.  Acknowledging that most parents of disabled kids can not work full time due to the extra care or kids need and perhaps some kind of tax break?  – Family / whānau member, Bay of Plenty 

3% of respondents emphasized that interaction with the system should be simpler and more transparent, having clear guidelines that are easily referred to by disabled people, family/whānau, and providers alike.

Barriers to accessing DSS should also be addressed. Utilising connectors and advocates, particularly for Māori, Pasifika, immigrants, and those living rurally.

A further 8% referenced EGL and UNCRPD, focusing on easy-to-use services, person centered approaches, and relationship building. 

I hated fighting for the budget we have now. I hated having to explain over and over that the disability is not going to go away and that it will get worse leading to death. Given that we deal with a very rare disease that there be understanding of the parents expertise and that be taken into account when being assessed. Having said that we have an amazing NASC person – Family / whānau member, Bay of Plenty 

39% of respondents suggested making changes to the disability system itself. The system should have greater accountability, greater representation, and involvement of the disability community in policy making.

Others outlined the importance of more funding to the system, including a better funded and well-trained workforce.

Others suggested a focus on improving equitable outcomes and accessibility from various agencies, particularly with closing the gap between those receiving ACC support/funding and those receiving DSS.

A further 4% felt that EGL should be continued and rolled out nationally. 

Remove the horrible barriers and chasm of difference of services between ACC and DSS, establish a level of need and support it appropriately -there should not be a system of "haves" and "have-nots" which is what currently exists.  EGL provides for the above if resourced appropriately -NDIS is how things should be done, equitably. Yes, there are costs, yes there is challenges, however we are people, not numbers. – Disabled person, Southern 

Stopping the national roll-out of EGL is not about making disability support services fairer, it continues the inequity. The EGL needs to be rolled out nationally to make disability support services fairer. – Disabled person, Southern