Submission

to the

Commonwealth Joint Standing Committee on the National Disability Insurance Scheme (NDIS)

Inquiry into the Capability and Culture of the National Disability Insurance Agency (NDIA).

Preface

The ACT Government is a co-owner of the National Disability Insurance Scheme (NDIS) and welcomes the ongoing work of the Commonwealth Joint Standing Committee to inquire into and report on the implementation, performance, governance, administration and expenditure of the NDIS.

The ACT will respond to the Terms of Reference for this inquiry to inquire into and report on:

a) the capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment
b) the impacts of NDIA capability and culture on the experiences of people with disability and NDIS participants trying to access information, support and services from the Agency; and
c) any other relevant matters.

It should be noted that Disability Reform Ministers have recently agreed the Terms of Reference for a broad ranging independent review of the NDIS to improve the wellbeing of Australians with disability and the scheme’s sustainability.

The review will comprise two parts:

➢ Part 1 will examine the design, operations and sustainability of the NDIS covering issues outlined in the full-Scheme bilateral agreements between the Commonwealth and jurisdictions. ➢ Part 2 will examine ways to build a more responsive, supportive and sustainable market and workforce.

The findings of this inquiry will be of relevance to the upcoming NDIS review, given the scope of the NDIS review has as its overarching aim to ‘put people with disability back at the centre of the NDIS, restoring trust, confidence and pride in the NDIS amongst them and their families and carers as well as the broader Australian community.’

Should relevant recommendations to improve capability and culture within the NDIA arise from this inquiry, consideration should be given to recommending which actions can be implemented promptly and quickly by the NDIA to improve culture and capability without waiting for the findings of the NDIS review.

Aspects of this inquiry may overlap with work and ultimate recommendations of the Disability Royal Commission. The ACT Government will consider and respond to any relevant findings of both inquiries in due course.

Scope of the ACT Submission

This submission will provide the Joint Standing Committee with information regarding the experiences and feedback received from the disability community during consultation on the ACT Disability Strategy. It also includes feedback and information received across the ACT Government and from key advocacy and representative organisations in the ACT, as well as the views of members of the ACT Disability Reference Group (DRG), an advisory body comprised of people with disability which advises the ACT Minister for Disability on issues impacting people with disability in the ACT.

Three personal accounts are also included from members of the ACT disability community who have generously agreed to share their experiences on engaging with the NDIS. These people’s experiences speak to issues of capability and culture with the NDIA, and how these issues impact participant experience of the Scheme.

It is clear in analysing feedback from the community that people engaged with the NDIS don’t necessarily differentiate between the Scheme and the agency responsible for its delivery, the NDIA. Nor is it clear that people understand the broader role of the Department of Social Services (DSS) regarding policy setting and market stewardship, for example.

Consequently, this submission may interchange the NDIS and the NDIA to remain true to the sentiment of the issues raised by people engaged in community consultations.

Introduction

The capability and potential of the NDIA are significant factors in addressing some of the barriers to inclusion and opportunity for persons with disability in Australia.

For the NDIA to address barriers to inclusion and opportunity for people with disability, a deep understanding of the substantial gaps in access and opportunities is required. The ACT Government submits this remains as an emerging component of the NDIA’s place as a provider of Australian social services.

The NDIA, its workforce, its culture, and its intersections with other services plays a significant role in the cultural transformation required for equitable access to services for persons with disability in Australia.

The ACT Government observes the lack of transparency of NDIA process, layers of procedure and lack of consistency in delivery, are a source of frustration and distress to participants, other agencies working with the same cohort of persons and potentially with staff.

The skill and capacity of the workforce in disability services requires substantial investment over time and the Scheme is delivering this to a large extent. There is a continuing challenge in raising this workforce, maintaining diversity and standards, and its intersection with other critical services such as housing, transport, education, and health in each jurisdiction. Critical to disability workforce effectiveness is an understanding of the principles of the United Nations Convention on the Rights of Persons with Disability (UNCRPD), the social impact and the place that an insurance scheme might play in remedying some of the barriers to equity in Australia.

A workforce with sound acknowledgement of these principles will be better able to articulate and identify the place of the scheme in the cultural transformation and social change for people with disability.

Transparency of process and procedure would greatly assist in influencing the expectation of community, participants, and staff in service delivery. This will also address frustrations particularly with timeliness and inconsistency in decision making and the poor participant experience.

Page 4

The disability community has a reasonable expectation that the NDIA is working toward achieving equitable participation and social inclusion for persons with disability based on providing reasonable and necessary supports within a framework of choice and control for participants. There is also a reasonable expectation that the NDIA is playing a role in building the capacity in individual participants, organisations, and systems.

It seems counter-intuitive that persons with disability need increased supports and services or are driven to the need for a substitute decision-maker to access a scheme with an inherent purpose of building capacity with persons with disability.

The NDIA’s role in actively addressing access pathways and ongoing communication delivery tailored to the support needs of individual participants seems critical to sustainable delivery. This would also contribute to modelling equitable access for other general systems and reduce the burden of intermediate support services to access or utilise the scheme.

Feedback from the ACT disability community, and ACT Government experience in representing its clients who are participants in the NDIS, is polarising. There are undoubtedly instances of transformative change in the life of an individual through access to supports and services. But feedback also points to deep distress and extreme frustration at the opacity of decision making, inability to access identified necessary supports (the thin market) and inconsistency with understanding and interpreting the challenges of accessing information, support and services and intersections with other services.

Of significant concern to the ACT Government is that the challenge in accessing information, navigating systems and paperwork overwhelms persons with disability or their families such that their agency in decisions about their own life is significantly reduced or replaced with a substitute decision-maker.

Simplification of the process, transparency in procedure, consistency in delivery of scheme intent must include steps to support any person with disability to access and utilise the scheme on their own behalf or to build capacity to do so with a supported decision-making network. Safeguarding the process of decision-making with support is immeasurably better than appointment of a substitute decision-maker (public or private), more sustainable and more consistent with the goals of equity for persons with disability in Australian social and human services.

Personal accounts from NDIS participants and their families

The following stories have been generously provided by members of the ACT disability community willing to share their experiences of their interactions with the NDIS. Names have been changed to protect people’s privacy. These case studies have not been edited.

Mary

The cultural stance of the Agency seems to be in direct opposition of its purpose. It feels like there’s very much a position of a welfare agency (and I’m not saying that it’s correct for welfare agencies to have this attitude, but they certainly do) where they feel like we are lucky to get anything at all from the taxpayers and we should just be grateful.

It also feels like there is over policing of participants in terms of how they use their funding rather than looking at the places where fraud is actually occurring with providers. Likely because participants are seen as easy targets and it justifies their stance and position of reducing plan and funding. Again, fits with the welfare position.

There seems to be a lot of disconnect within the organisation with no interaction between areas on things like complaints. They need to be one NDIA, united under a single purpose and all understanding the vision and goals and objectives along with how to enact that right down to the individual role level.

There is also a disconnect between the NDIA and other departments. There is no commitment to helping people, rather just a blanket rule that they then rub their hands of. For example, the NDIA provide no support to participants in the school system, instead saying the school and Education Directorate needs to provide the support for the child to learn and participate at school.

But if the NDIA are saying no and the school is doing nothing then that can feel so very horrible, having no one that will listen and support you. Why can’t the NDIA work with education to ensure that whatever needs that participant has are met either by the NDIA or the school? It could, and should, happen with a number of other departments. The situation about coming out of hospital into safe and supported accommodation is another example.

Complaint’s handling is so very poor, and I know they ‘resolve’ complaints before they actually resolve them – as soon as the team hands the issue off to be dealt by the relevant area with they close the complaint even though it’s not actually been addressed. Goodness knows why they see handing off a complaint as resolution, but it speaks to my point above about there being no interaction between areas.

The level of disability knowledge is abysmal – even just knowing some of the basic things like that we don’t use the word handicapped anymore.

The agency seems to want to be the ‘expert’ around the needs of people with disability but also do nothing to provide their staff with that level of competence and knowledge. The people making decisions about what is funded in a plan do not have the expertise to understand the needs of participants yet still think they know more than the experts’ providing reports and evidence around the needs for people with disability in order to make funding decisions.

I recall right at the beginning someone asking my OT why I can’t just get a walker instead of my new wheelchair – I mean, seriously??!!?!? It’s not just being an expert in disability, but also in assistive technology – I’ve not come across one person who has expertise in the tech of powered wheelchairs and would understand why an OT might be recommending a particular model of chair even if it isn’t the cheapest.

Participants are not seen as the experts of their own lives and needs. They are constantly questioned, provided no continuity in service provision (I always talk to a different person it seems) and often have to retell their stories every review.

The agency needs to increase its technical capability – not just in terms of staff knowing how to use digital tech, but in terms of the uplift and adoption of tech innovations into the interactions with the agency and the platforms. I’m sure we could use the tech better to make things easier for both employees and participants. It feels like investment in these cutting-edge technologies is rejected because it’s just disabled people and they don’t need that.

The adoption of these sorts of technologies would make engagement and communication with the agency much easier and hopefully less time consuming and more accessible. I also feel digital tech adoption should be a priority for staff and making their jobs easier. There’s nothing worse than working on old tech that’s clunky, slow, and so outdated.

A number of years ago I heard whispers of a chatbot being developed by NDIA that was so realistic it was canned because people thought it was too good and would put people off. Not sure if it’s true but if they can do that then they can invest in and implement some new tech to make the portal so much better and to connect information and data.

There seems to be a reluctance to be transparent and open. Case in point the complaints handling. Of course, they are going to report high resolution of issues because they just close them off without even addressing the issue. They need to be honest and open in order to build trust back with participants, but also with the wider Australian public.

We want and need every Australian to care about keeping the NDIS/A going and that means being accountable. We can’t hold them to account if they’re hiding and burying all the issues.

All these things relate to agency maturity. Right now, they are just struggling to keep staff, make consistent decisions, understand the role of the Agency and even individual jobs. It’s time for them to grow up and be a leader. Bring in strong leaders and lift the culture.

I guess that means they need strong leadership capability! They also need the voice of people with disability right throughout the agency. It must be part of the vision and purpose and they should be leading the APS in employment of people with disability. This will help the leadership and culture.

Fran

Since joining the NDIS in 2017, I have been concerned about the stewardship of the system.

My experience is that the scheme is a bureaucratic nightmare and that even though I have post grad qualifications I am constantly unsure that I am taking the right items out of the right buckets of money. The terminology used and its inconsistent use across different formats given to participants is confounding. It is as if it is deliberately set up to confound.

I usually only spend half of what I’m allocated as the plan does not reflect my needs. It seems so arbitrary depending on who does my plan and what they know. I have been told one thing by one planner and another by someone over the phone at the NDIA.

Most often these people seem to have little or no understanding of my disability and how it affects my life but they are charged with deciding where large sums of money are to be allocated. This seems dangerously ignorant and wasteful. It seems like “a paint by number” approach to planning where you need to fit yourself into whatever they would like you to get.

An example of this was that for years they have kept giving me money for gardening and cleaning which I don’t want but would rather spend money on keeping up with the latest voice assistive technology that Apple brings out in many forms.

Voice assistant tech is a game changer for people who are vision impaired. I am legally blind and have had to buy much more expensive “blind” assistive technology because there is a blanket ban on buying normal mainstream items like iPads which could do the same job at a much lesser cost impost.

During planning meetings. I have been asked if “I could dress myself”, “feed myself” and “communicate with my family” even though my disability is visual. I was told that they ‘had to ask’ these questions of everyone. After planning meetings, I have felt that my goals as written on my plan, were not ones I felt I had communicated in the meeting but there was no chance to review these before they were set in concrete for the year.

The gatekeepers in the system seem to be making a lot of money from the NDIS and this money could better be directed toward services and supports for people with disability. A good example of this is a few years ago I wanted to buy mounted binoculars at a cost of about $500 so I could watch my daughters play soccer on the weekends.

I waited almost a year to get someone to write a report supporting this, by which time, the item had been superseded by better technology. This report cost $1350 for an item less than half that cost. I

never did get the item, but the report had to be paid for. Instead, I needed another report for the more updated tech. This involved more money and time by which time my daughter had left school and stopped playing soccer.

There are limited local equipment suppliers, waiting times are long, and I have been told they will only support the items they sell. This is an obvious conflict of interest but have been told it’s because they need to see the client using the equipment.

This seems problematic on a number of fronts especially as the NDIS is supposed to be about ‘choice and control’. Whilst open to suggestions, I have the greatest understanding about what my needs are and what assistive technology would suit that need. Even though I have always had more money than I’ve ever spent in my NDIS budget, the amount being charged for, and the number of reports required for each piece of assistive technology seems to be alarming.

I have queried line items on two out of three of the reports that have been written on my behalf. On both occasions the report cost was lowered by a couple of hundred dollars each time. These providers were simply gouging the NDIS and charging the maximum amount they could even when they clearly hadn’t done all the training/ phone calls/ research they were claiming they had.

Despite asking for many years, I have yet to receive a large print copy of my plan. I have been sent pdfs that I can’t access because they are not screen reader friendly. I have given feedback regarding these matters to the Federal Minister responsible for the NDIS and my local Minister, a Senate enquiry, and to a NDIA review team but nothing ever seems to change in this regard.

The lack of training and knowledge that the people who work in the system seem to have around basic disability awareness is a major issue for both the stewardship of the large funds involved and the basic disrespect it shows to the people who the scheme is for.

The planners and the staff answering calls have mentioned to me when asked over the years that they’ve received little or no disability awareness training. Further to this, broad systematic change for the better will not come about whilst the NDIA Board and advisory body have had limited numbers of people with disabilities represented.

I am grateful for the system and believe some aspects like the transport allowance work well. However, there is an urgent need for an overhaul of the many parts that don’t work well for the people the system was designed to support.

Anne

In the phone call from the LAC (Feros Care) to let me know my child had been accepted onto the scheme, and to make a time for our first plan meeting, I asked what I needed to do to prepare. I was told to “think about goals” for my child.

When I got to the meeting, I was told certain things would not be funded as I had not brought quotes with me. After the meeting, I was sent an email to request that I present to a NDIS office to provide 100 points of ID.

It would have been very useful to be provided this information during the phone call, when I could have sought quotes, and brought my ID with me to the meeting. Even the NDIS booklet that is designed to support people to prepare for such a meeting is vague and doesn’t guide people through the different funding buckets and their purpose – which would have been very useful preparation before the meeting.

Overview of ACT Disability Strategy consultation approach

To consolidate the ACT Governments commitment to the national disability strategy Australia’s Disability Strategy 2021-31 the ACT Government is developing a whole-of-government response in the form of a 10-year ACT Disability Strategy (the Strategy).

The Strategy will illustrate the ACT Governments commitment to creating a more welcoming and inclusive society and improving the lives of the more than 80000 Canberrans who identify as people with disability, including the ACT’s 9486 NDIS participants.

All aspects of the development of the ACT Disability Strategy is being codesigned and led by people with disability Every public consultation forum and event was led by people with disability resulting in an authentic and community-led process which engendered high levels of participation and trust.

The consultation for the ACT Disability Strategy was held between 24 April and 25 August 2022.

  ➢  415 people attended 33 events including focused conversations and open forums
  ➢  35 submissions were received
  ➢  397 surveys were completed through the ACT Government Your Say platform

Key themes raised by the ACT disability community

People want the NDISto work

There are undoubtedly participants who have had their lives transformed by the NDIS.

People who commented positively on the NDIS expressed that getting on to the NDIS (or the person they care for getting on the NDIS) had improved their wellbeing, by increasing independence and reducing strain on their relationships as they no longer relied so heavily on informal support networks.

The NDIS facilitates increased access to the community, social inclusion and improved access to independent living and employment and economic inclusion.

There is a high level of investment in the NDIS for its participants, which often translates as frustration in the processes, bureaucracy, and difficulty of engaging with the Scheme and the NDIA.

Community members want the NDIS to be better, remain true to its commitment to codesign, and to put people with disability at the centre of the Scheme, as experts in their own lives and disability.

TheNDIA‘needsareset’

ACT community members advise of the need for a total reset in the NDIA, starting with an attitudinal shift from what’s described as the current assumption that individual participants and providers are ‘gaming the system’ or accumulating unnecessary supports, when people with disability would like to live independently and with as few supports as necessary.

Redtapeandbureaucracyistraumatising

One community member described the NDIA as an “invisible monster”.

Many participants describe engaging with the NDIA as traumatic and patronising, with incomprehensible rules, too much red tape and is a bureaucracy that seems to actively work against achieving outcomes for participants.

“Even before accessing treatment or supports, the process to access diagnosis is very unclear, service providers have different processes, ACT (NDIA) staff don’t seem fully informed, it’s very vague and difficult. Families have to choose own service providers without any way to check them. The different pathways for different ages are complex.”

Feedback from the ACT community indicated it is generally hard for participants to negotiate the NDIS, especially for those with more complex needs or cognitive disabilities such as psychosocial disability.

It was felt that those people able to make the NDIS work for them were highly educated, with the time and energy to manage the administration and the ability to effectively advocate for themselves or the person they care for. Consequently, the NDIS does not work for a lot of people.

Consultation participants felt strongly that the NDIA was overly bureaucratic and complex.

They did not know what information or supporting documentation would be required for a successful application.

Application forms are reportedly difficult to understand, with one participant stating “I am an analyst in the public sector doing a PhD and I can’t fill in all the NDIS forms. How does someone who has not had the privilege of an education get anywhere with anything?”.

Participants were exhausted by the administrative burden, and the need to communicate with multiple management layers and different bodies. They were also frustrated by long wait times to find out the outcome of applications or reviews.

The participant experience is poor and the planning pathway is ‘incomprehensible’ The participant pathway is described as incomprehensible, overly bureaucratic, inconsistent and does not put people with disability’s expertise about their own lives at the centre.

Planning inconsistency, poor communication about planning decisions, cuts in plans without changed circumstances, and appeals and review process which are burdensome were all identified as leading to a poor participant experience.

There is an associated impact on families and carers who are supporting people to navigate the complex system, and a view that planning decisions do not consider any impact on carers and families.

The appeals process remains adversarial, burdensome, time consuming and engenders feelings of frustration in having to fight the Agency to receive adequate and reasonable and necessary supports.

Decision making is inconsistent, delayed and poorly explained Community members raised issues regarding delays in planning decisions, funding instability and uncertainty, and inconsistency in plans.

One participant stated “[a good life would be one where I am] able to access funding and support on an ongoing basis.“Feedback identified that cuts in plans occurred without an understanding of why a plan is being reduced or adequate communication being provided to support planning decisions. An example was given of planning decisions being taken to move a participant from complex supports to standard supports without reason, which means that people are constantly having to have plans reviewed or to seek a review of decision.

Issues were raised about prolonged delays in decision making around Supported Independent Living (SIL) which was contributing to delayed hospital discharge, and general stress an uncertainty for people seeking housing solutions.

Greater market stewardship is required ACT community partners have called for the NDIS to play a greater role in market stewardship, to address thin markets, provider quality and to address inconsistencies in regulatory responses between registered and non-registered providers.

A market stewardship role in improving provider competency in understanding and addressing domestic and family violence and building Aboriginal Community Controlled disability support providers was also called for.

These comments from the community indicate an unawareness of the role of DSS in market stewardship, or of the role of both Commonwealth and State and Territory governments may play in addressing these issues.

General Feedback

Generally, this feedback indicates a desire for more work to be done on this matter, regardless of whose responsibility it is.

Getting external assessments and expert advice is burdensome and not listened to

Community members identified significant red tape and administrative burden for participants gaining Assistive Technology (AT) that requires seeking significant supporting evidence from Allied Health Professionals, and that often this advice is ignored or overturned by planners who are not experts in AT.

It was identified that AT is not being viewed through the lens of being an inclusive technology that allows people with disability to better participate in the community. It is not just mobility equipment.

It was raised that discussions about AT do not recognise that people with disability are experts in their own life and people raised that the NDIA is not the AT expert.

There are significant Allied Health workforce implications arising from the administrative burden around AT, in a sector in which there are already workforce shortages and lengthy wait lists to receive assessments. The community identified that the need to get assessments for AT created further pressures on the Alliance Health sector, which was exacerbated when these assessments were not taken on board and used in planning decisions.

“The lack of allied health providers for people with disability – OT [Occupational Therapy], speech, capacity building psychology is an enormous problem. 28 months wait for OT. 4 sessions and the OT leaves and now we have another 12+ month wait. 7 months wait for speech therapy. 10 months wait for an ASD assessment. 8 months to get into a psychologist. How is this acceptable for an autistic child? We are utterly failing children with disability.”

Access to the scheme for people with multiple conditions requires access to multiple assessments and generates significant burden on participants.

There is an overwhelming view that the burden of evidence is not balanced in favour of the participants, creates system complexity, and then is not listened to by NDIA staff. This is a major frustration for participants.

Poor interface with mainstream systems

“Parents and carers should not have to reinvent the wheel on how to navigate school and the NDIS on their own”

Feedback from the ACT community indicates that the NDIS interface with other mainstream systems, such as the health and aged care systems, is complex and challenging, leading to poor participant experience.

The complexity of the mainstream interface also resulted in poor practice at the operational level for participants. People raised concerns that they felt ‘shunted between two systems’ and that this made people feel like they were a problem rather than in control of their lives.

Other participants raised issues with not being able to access their disability supports while in the health system, leading to overall feelings that they were unsafe and unsupported in healthcare settings.

The poor interface and inoperability between the NDIS, My Aged Care and MyGov portals were identified as a barrier to access and placed increased burden on people with disability to be holders of all their information.

Home and living supports require reform

ACT community members strongly identified that opposition to forced unsuitable shared living arrangements was a key reform driver in establishing the NDIS, but the range of issues around Supported Independent Living (SIL), Specialist Disability Accommodation (SDA) and Home and Living Supports is in danger of recreating the same system for people with disability.

Community members advised there is a disconnect in the ethos of choice and control playing out in SIL planning decisions: people may wish to live independently in their own home, but SIL funding does not support this,

forcing people to enter unsuitable SIL accommodation, or have their human rights impinged by living in shared accommodation.

Community members suggested the NDIA needed to reach a better balance between their decision-making lens of value for money, and the opportunity costs on the broader community, including inexplicable cuts to peoples plans that in some cases is forcing people to exit SIL and return home, where there is additional burden on families and carers and an increased reliance on informal and unpaid supports.

Community members identified that Home and Living Supports should be allocated as long-term funding in people’s plans with built-in indexation, not something that should be reviewed regularly. While people’s support needs can change over time, people’s housing needs do not.

Inconsistency and decision making which lacked common sense were also raised. An example was provided where a NDIS participant who required a wider door was a member of a six-person household. The NDIA only funded one-sixth of the costs of the door widening.

   Specialistdisabilityaccommodationis‘messy’andslow

SDA was identified by one community member as a particularly ‘painful and messy’ system for participants to negotiate. Community feedback identified a lack of leadership and ownership of SDA from the NDIA which has contributed to an underdeveloped market and fewer housing options for people with disability.

Community members identified issues with poor construction and issues with property developers where SDA properties have been built with faults and defects, which often left the provider with no recourse to address property issues and people with disability living in unsuitable or unfinished properties. Feedback was that the NDIA should play a greater role in overseeing SDA outcomes.

  ConversationsabouthousingoptionsneedtobebroaderthanSupported
  IndependentLiving(SIL)andSpecialistDisabilityAccommodation(SDA)

Delays in planning decisions and the coordination and lack of readily available SDA, SIL and aged care settings is a barrier to discharge for NDIS participants in hospital settings.

However, ACT community members identified there are broader issues about housing availability and affordability for all people with disability seeking to exit health care settings.

The is a strong view that the NDIA should be facilitating greater focus on housing solutions that consider rental availability and affordability as barriers to hospital discharge. The inability for home modifications to be made to rental properties is also a barrier for hospital discharge.

AgreaterunderstandingofDomesticandFamilyViolenceisrequired Research shows that women with disability are at significantly higher risk of all forms of violence, including domestic family and sexual violence. This increases further for women with disability who are Aboriginal or Torres Strait Islander or culturally and linguistically diverse.

People with disability in Australia (Australian Institute of Health and Welfare, 2022) reports significant levels of domestic, family and sexual violence for people with disability: ➢ 1 in 2 (47%) adults with disability have experienced violence since the age of 15. ➢ 2 in 5 (43%) adults with disability have experienced physical violence since the age of 15. ➢ 1 in 5 (20%) adults with disability have experienced abuse before the age of 15.

Feedback from the ACT community identified several concerns in relation to people with disability who experience domestic and family violence:

The domestic, family and sexual violence services sector does not always know how to recognise and respond appropriately to people with disability, although the ACT Government has funded the Better Safety Project to build disability awareness and capacity to make reasonable adjustments within this sector and to broker bespoke responses as required.
There is a lack of data collection and reporting on women with disability and their experiences of domestic, family and sexual violence.
By services not adequately understanding or responding to people with disability, it may result in those people experiencing barriers to safety and appropriate supports. A lack of appropriate responses when experiencing domestic and family violence can increase safety risks for people with disability.
People with disability have identified that having to explain personal information to multiple services can have a negative impact, particularly when there is history of trauma and family violence.
Carers may use provision or denial of support and care as a form of control.
People with disability may have their support services suspended or ceased when domestic or family violence is identified. This can be due to concerns for worker safety, lack of understanding and training in identifying risk, information sharing and safety planning. Any change or suspension to a person’s supports may impact on a person’s feelings of isolation, their wellbeing, as well as physical and emotional safety.
An abuser may deliberately act to control, manipulate or remove support services to increase their control over a victim-survivor.

The ACT community identified a need for:

greater collaboration and information sharing between services for people with disability who are experiencing domestic and family violence. This includes between the NDIA, disability services and domestic and family violence services, to ensure a holistic and coordinated response.
domestic, family and sexual violence services to increase their understanding of disability and the barriers that prevent access to services.
disability services to increase understanding and recognition of domestic and family violence and responding, noting the Better Safety project also has a component which aims to build capability within the disability services sector of domestic and family violence.
the NDIA to play a greater role in developing understanding and capability in registered NDIS providers.

Increased cultural safety and support for Aboriginal and Torres Strait Islander people is required

The ACT community identified that there are no Aboriginal NDIS plan managers in the ACT and that there are also no specialist disability support services for and lead by Aboriginal and Torres Strait Islander people in the ACT.

“There are close to 100 NDIS support agencies in Canberra, and I have been engaging with those agencies – Feros Care, Aruma, Step Up, Community Options etc., for 10 years. The bottom line is that most services do not have the cultural competency skills.”

The ACT community has a strong view the NDIA needs to increase its cultural competence and play a more active role in stewarding Aboriginal Community Controlled disability support organisations.

“There is no Black or culturally safe organisation to coordinate supports to employ our mob.”

CodesignoftheNDISandgreaterrepresentationofpeoplewithdisabilityin

leadershippositions The ACT disability community very strongly identify that codesign and increased representation of people in leadership positions in the NDIA is a critical component of improving culture, capability, and outcomes for NDIS participants.

ACT Government views

Improvementinthemainstreamhealthinterfaceisrequired

As outlined in the submission already, the culture within the NDIA has a significant impact on outcomes for NDIS participants and their healthcare providers. Canberra Health Services (CHS) provides supports for NDIS participants in hospital and are a registered NDIS provider for community nursing, allied health and some assistive technology services.

NDIS participants who have been admitted to hospital will often require changes to their NDIS plan and supports prior to being able to leave hospital. Similarly, improved coordination of supports while a client is in the community can help prevent hospital admissions.

CHS clinicians often face barriers to working collaboratively with the NDIA to progress these needs as there appears to be a reluctance to engage with front line health services, which creates increased burden and frustration for the Territory.

Key issues include:

Significant workload for clinicians to provide, or support participants to provide, overly extensive levels of evidence against inconsistent requirements for evidence. This can be both for clients newly entering the scheme and to support a change in requirements. Inconsistencies in this space create confusion and uncertainty for clinicians and participants alike.
Onerous questioning of clinician recommendations resulting in significant delays to clients gaining funding for necessary supports and additional workload for CHS to provide greater levels of evidence. Functional Assessments and Assistive Technology (AT) advice are consistent areas where this is an issue. Clinicians working in public health should be trusted by the NDIA as both clinicians and public servants to be experts regarding the needs of their patients.
Creation of the perspective that there is a health versus NDIS situation where the client gets stuck in the middle. While we directly seek to avoid clients being placed in this situation, in the community we often have clients informing us the NDIA have told them that public health services should provide the supports and the NDIA won’t fund them. This occurs particularly around the issue of Disability Related Health Supports (DRHS). There is hardly ever the opportunity to work with the NDIA to address these issues.
An additional area of difficulty is the highly bureaucratic nature of the NDIS makes it onerous to provide clients with assistance and support. When difficulties or delays occur (often around AT or DRHS funding), it is difficult to work directly with the NDIA despite this often being the client preference as the NDIA will always want the matter coordinated through the client. For a range of our more vulnerable clients, this is burdensome, stressful, and often results in increased failure/extensive delays to achieve the clients’ wanted outcome.

It is CHS’ view that increased collaboration and a more collegiate approach with other supports that NDIS participants access, including front line health services, would improve participant experience overall and reduce burden on public health services to have to perform unnecessary advocacy for the consumers with another government organisation.

Delays indeemingofSDA

In February 2020, the NDIA advised the ACT Government in writing that all ex-government disability program clients in the ACT would be deemed by the NDIA to have Specialist Disability Accommodation (SDA) included in their plans without requirement to apply and then go through an assessment process. The NDIA also stated all of these participants would be deemed even if they otherwise may not meet the criteria through assessment.

There are around 228 NDIS participants residing in properties enrolled by Community Services Directorate (CSD) with the NDIA for SDA. (Noting as a separate matter, that while CSD is registered for SDA, CSD is not an active provider and is not receiving any SDA funding for these participants.) All these participants residing in enrolled dwellings are ex-Disability ACT program clients and nearly all, if not all, have severe functional impairment or very high support needs, are receiving SIL and should have SDA.

To date the NDIA has only included SDA in the support plans of 133 (or 58%) of these 228 participants. CSD estimate the NDIA are including SDA in the support plans of this group at the rate of about 5 people per month. At that rate it is estimated not all of this group will have SDA in their plans until April 2024.

The NDIA has indicated to CSD that the NDIA are working to include SDA in people’s plans through an annual review process. This raises two issues:

 -      that after more than 2.5 years the annual review process should have enabled SDA to be included
          in participants plans by now,

 -     reviews do not appear to be taking a ‘deeming’ approach as reviews are involving assessment,
        rather than the NDIA taking a simplified and expedited approach to match property enrolment data
       with already acquired data for participants receiving SIL at those addresses as previously agreed.

GapsinearlyinterventionarefailingCanberra’sChildren

A key measure of children’s progress under the ACT wellbeing framework is the Australian Early Development Census (AEDC). Every three years across Australia, children in their first year of full-time school participate in the AEDC. The AEDC track the health and wellbeing of young children against a series of developmental domains. ACT children have the second highest developmental vulnerability nationally on the AEDC and the ACT has seen significant increases in this trend in each three-year cycle since 2015.

Considerable community consultation and feedback to ACT Government has consistently identified a gap in early intervention therapeutic service in the ACT because of changes made at the introduction of the NDIS in 2013, where the ACT cashed out its therapy services with an expectation early intervention would be provided under the NDIS. As a result, at October 2022, the ACT is the only jurisdiction where families and children do not have access to publicly available early intervention therapies.

Children who do not have a diagnosis of a disability or who have emerging developmental concerns are not eligible for the NDIS and are therefore largely excluded from accessing early support clinical services. The private early intervention system is an option for those who can afford it, although availability of private allied health professionals is limited in the ACT. This situation is at odds with ACT expectations of how early intervention services would be provided under the NDIS in the ACT. These current arrangements leave a large proportion of ACT children without the critical interventions such as Speech Pathology, Occupational therapy and Social Work services needed to address developmental concerns.

It is evident that ACT children are increasingly developmentally vulnerable and current NDIS and ACT government services are not providing the necessary interventions to meet community need. Left unchecked, children’s developmentally vulnerability increases the risk of depleting resources and adding pressure to the health and disability systems later on as the cumulative effect of multiple adverse experiences playout over the child’s life course. Health inequality has significant social and economic costs to individuals and the community. Every child who is not thriving is a missed opportunity: an opportunity at the individual and community level to support improved development, and a missed opportunity for the ACT economy and community.

Strong research evidence finds that developmental vulnerability has a detrimental effect on children’s school engagement and life outcomes. If unaddressed, developmental vulnerability jeopardises a child’s life chances and may lead to later in life chronic and debilitating health conditions such as poor mental health, drug and alcohol use and heart and respiratory conditions. Because of the rapid and dramatic nature of development during the early years, actively supporting parents and promoting children’s development during this period (i.e. ‘early support and intervention’) can dramatically shift life trajectories.