Introduction
The curse of government is that good ideas can turn to mere ghosts of their former selves as re-conception of the original idea is matched by constraints on resources and changing realities.
The field of Disability Inclusion is no exception. The genuine commitment to Disability Inclusion expressed by the NSW government does not form an inoculation against good ideas becoming neutered by a loss of fidelity to the original intent.
Disability Inclusion has not been looked at with an informed critical eye. We can be too close or too distant to see clearly. The bureaucrats who continue to deliver invaluable work in promoting Disability Inclusion are hampered by a situational myopia. This isn’t a criticism. It’s the reality of working under time pressures and resource limitations. The luxury of deep review is not available, which is why consultants are used – and, despite their best skills, they can be too much the outsider.
Activists outside bureaucracy may chafe against the constraints of the system with good cause, but unless there is a sympathetic engagement with the bureaucratic perspective, criticisms can come across as a churlish lack of appreciation for the work that is being done. It is rare that such an engagement happens.
The NSW Disability Council merits a closer critical look in this context. I will look at it in the context of a report – Review of the NSW Disability Inclusion Plan 2018 prepared by the Sax Institute and delivered in June 2019. Never heard of it? Me neither, until I found it by accident.
Disclosures
- Until 10 June 2021 I worked in the Department of Communities and Justice’s Disability Inclusion Team which provided secretariat services to the NSW Disability Council.
- I have presented before the Council, and I have attended an International Day of People with Disability event hosted by the Council.
- I was sent information about applying to become a Council member in 2021, which I completed and submitted with reservations about losing my independence to comment. I was not successful, fortunately. Looking at the new membership, I would have been a very bad fit.
- It was the process of applying for membership that spurred me to take a closer look at the Council. It was previously just something in the background I was too busy to put time into thinking about.
- I have also been chatting with a former Council member
When Things Don’t Work as Envisioned
Good ideas degrade progressively from conception to implementation – and if they are not cherished and nourished, they degrade further. Eventually they are discarded as flawed and failed or they survive in zombie form.
The NSW Disability Council was established in 1987 under the Community Welfare Act (1987). It was continued in the Disability Inclusion Act (2014) – see Part 3. Something that was a great idea 30+ years ago may not be such a good idea now.
I don’t have the mission of the Council from 1987, but the current mission is in the current Disability Inclusion Act at 3:17. It is to:
(a) to monitor the implementation of government policy in relation to people with disability and their families,
(b) to advise the Minister on emerging issues relating to people with disability,
(c) to advise public authorities about the content and implementation of disability inclusion action plans,
(d) to advise the Minister about the content and implementation of the State Disability Inclusion Plan and disability inclusion action plans,
(e) to promote the inclusion of people with disability in the community,
(f) to promote community awareness of matters concerning the interests of people with disability and their families,
(g) to consult with the National People with Disabilities and Carer Council and other similar bodies,
(h) to consult with people with disability and undertake research about matters relating to people with disability,
(i) any other functions prescribed by the regulations.
These are all good things to do, but who is going to do this? The Council comprises no less than 8 and no more than 12 members who are:
a) members of, or persons employed by, organisations concerned especially with the interests of people with disability, and
(b) other persons with appropriate skills and experience in matters relevant to the interests of people with disability.
These attributes are fine as they are. There is also a requirement that “The majority of members of the Disability Council must be people with disability.” That means 7 of the 12.
The members are appointed by the Governor. This is an immediate concern for me. Back in 1987, when Disability Inclusion was in its infancy, and our social structure was very different, that would have been fine. But now, in 2022, that level of formality seems to be anachronistic. It’s too much like the respectable middle class still congratulating itself long after the Disability Inclusion horse has left its stable.
Similarly, the Council meets at the NSW Parliament House. It’s a great venue, but it’s also rather grand in today’s context. Let me be more specific about that context. Relative to 1987 there’s vastly more Disability Inclusion activity. Its no longer a respectable middleclass struggle, as it was way back when families banded together to make decent lives for their kids. That struggle led to the creation of what became significant disability service providers running group homes, enterprise and employment programs, and day programs. Back then there was very little by way of support in the community. There was very little awareness of disability, and Disability Inclusion wasn’t even a thing.
Things are very different today. I will use myself as an example here – as a contemporary disability activist. As well as chairing my department’s Disability Employee Network for 3¼ years; and designing its current Disability Inclusion Action Plan, I am a member of my local governments Access Committee, and I participate in the Blue Mountains Disability Forum (as an observer). This is a group of service providers from the Blue Mountains and Western Sydney. I also have ongoing relations with the Australian Network on Disability and the UK-based PurpleSpace, as well as Disability Inclusion activists in the NSW public sector and the Centre for Inclusive Design.
The Disability Inclusion scene in 2022 is vastly more vibrant and complex than it was in 1987. The idea that this scrappier community would want to meet at Parliament House or want have their membership of any group sanctioned by the Governor is hard to imagine.
Whatever the function of the Council was at its inception scarcely applies now. It can’t do what its charter says it does simply because the disability landscape is so much more complex and dynamic. And, it has neither the expertise nor the time nor resources to fulfill its job description.
The Limits of Reality
The Council meets bi-monthly – 6 times a year. The meetings are from 10.00am to 04.00pm with breaks for lunch (30mins) and morning and afternoon tea breaks (15 mins is usually allowed). That’s 5 hours per meeting for business. That’s 30 hours a year – 360 person hours all up. That’s a shade over 10 working weeks for a single NSW public sector employee.
So, let’s refresh our memories on the Council’s tasks:
- to monitor the implementation of government policy in relation to people with disability and their families,
- to advise the Minister on emerging issues relating to people with disability,
- to advise public authorities about the content and implementation of disability inclusion action plans,
- to advise the Minister about the content and implementation of the State Disability Inclusion Plan and disability inclusion action plans,
- to promote the inclusion of people with disability in the community,
- to promote community awareness of matters concerning the interests of people with disability and their families,
- to consult with the National People with Disabilities and Carer Council and other similar bodies,
- to consult with people with disability and undertake research about matters relating to people with disability,
- any other functions prescribed by the regulations.
That’s not doable. I spent 21.5 years working in disability related matters in the NSW public sector. I had a pretty decent output rate. Could I do that in 2 ½ months? Not a chance. This would be a full workload for a fulltime worker over 12 months.
Let’s just look at points 3 and 4. In NSW there are 128 local government areas. There are currently 9 departments and an array of statutory authorities and other bodies. Let’s leave the other bodies out and focus just on the departments and local governments. That’s 137 in all. The NSW Disability Inclusion Act requires that all public authorities must provide copies of their Disability Inclusion Action Plans (DIAPs) to the Council, which must read, discuss, and advise the public authority and the Minister on the content.
If the Council did nothing else, it would have to process one DIAP in under 15 minutes – 4 for every hour it met for a whole year. Plainly that’s not possible. Council members get paid a small fee for attending meetings, but they are volunteers, so expecting them to put in many hours of unpaid work to fulfill the Council’s brief is not reasonable. Though this happens only every 4 years, there isn’t a year’s grace to do this. It would be more like 6 months, or less, more likely.
But, of course, the Council does not review all DIAPs, only a selection provided by the Department of Communities and Justice. This means there is no comprehensive overview of the DIAPs, which are the operational edge of the state’s Disability Inclusion Plan (DIP).
Points 7 and 8 are important functions; but expecting them to be performed in the available time is not reasonable, especially when point 8 includes conducting research.
Likewise points 5 and 6 require promotional activity. How would the Council deliver on that on top of all other tasks? These days promotional activity is a professional activity, and would require a budget, plus the time to design and develop any promotional activity.
The Council does not have such resources. The Department of Communities and Justice provides a secretariate service to the Council and is, as such, the body most likely to act to meet the Council’s scope of activity – which begs the question as to why the Council should be involved, in name only, in work conducted by a government department. This becomes problematic when we look at point 1: to monitor the implementation of government policy in relation to people with disability and their families.
One might expect that such a monitoring function should be at arm’s length from especially the department with a particular brief to implement policy “in relation to people with disability and their families.” But given, now, other departments have particular briefs as well – think Health, Customer Service, Transport and Education – the task is complex and large.
Let me be clear. I have no critical comments to make about implementation of policy and the role out of disability related services in NSW – other than the obvious one. This is that it’s still not ideal and not enough resources are being applied. Agitating for more isn’t criticism – it’s just necessary to keep focus on the intent in the face of strong competition for resources and attention.
So, in sum, the NSW Disability Council can’t deliver on what’s on its plate. So why not rethink what it is about? The obvious question to ask is: What would we lose if the Council, as it currently is, ceased to exist?
I don’t know what the answer is. But this is what I do think I know. Having a government department effectively subbing for you, and most of what you do is provide a brand, really isn’t a good use of resources. Also, it’s kind of misleading.
An Alternative?
I think the Council is an archaic concept wrapped in a form of respectability that is past its use by date. Having a suite of functions that it cannot meet is an echo of an earlier conception. Even though 2014 is not that long ago in some respects, Disability Inclusion has moved at a cracking pace – as we’d hope. The NDIS has altered the landscape as well. With so much more happening, staying abreast of what has been achieved, and where the blockages are, is hard work – even for a fulltime effort, let alone a group that meets for 30 hours a year.
The NSW Disability Inclusion Plan (DIP) 2021-2025 says, on page 21:
DCJ will convene the NSW Stakeholder Disability Forum. Members will be drawn from people with lived experience of disability, the Disability Council NSW, the community and government sector.
This could be a good idea, but I have reservations. It can be reduced to an almost tokenistic effort to comply with the fact that it’s in the DIP; and must be done. I am not exactly sure why the Council is included, except it might seem rude to exclude it. Stakeholder groups will have a hierarchy, and I could imagine the Council wanting to be seen as the top dog, and others disagreeing. The reason for this is explored later.
On top of this, there is the NSW Disability Inclusion Action Plan – a state-wide version of what state agencies are doing. I was surprised to discover this. At present I have no idea how this state-wide DIAP is going to operate. I don’t know who created it. There is nothing evidently available on its governance. I don’t know if there has been buy-in from the departments mentioned in it. There was one section that suggested to me that some things may be good ideas developed without consultation with the agencies nominated as players.
The Review of the Disability Inclusion Plan
The Sax Institute’s June 2019 Review of the NSW Disability Inclusion Plan 2018 has some useful thoughts about what needed to be done to improve outcomes from the first NSW Disability Inclusion Plan. I have selected parts of the Key Findings which talk about what more can be done. The full Key Findings are below, at the end of this essay, as an appendix. I have omitted the good news as not relevant to my point. However, for the sake of balance I will quote the last few lines of the Key Findings – Despite this, many narratives of success have been gathered demonstrating the breadth of the groundswell towards inclusion.
2014 to 2018 DIP Sax Review Key findings
- DIAPs: The documents provide evidence of significant activity in the inclusion space, both in terms of the processes undertaken to develop the DIAPs and the volume of actions documented by agencies. Many stakeholders also noted that inclusion work within their agencies extended well beyond what could be articulated in their DIAP. However, there was also a sense that some DIAPs were not ambitious enough and had recorded activities that may have already been planned in other contexts.
- Resourcing: Lack of resources was cited frequently as a challenge for agencies in both developing and implementing their DIAPs. Regional local government areas in particular struggled with the process citing limited staff capacity to support consultation, engagement and planning and fewer financial resources to support the realisation of the initiatives. The Liveable Communities grants helped some local government areas implement smaller scale initiatives, such as installing ‘lift and change’ facilities.
- DIAP implementation: Critical to successful implementation were good governance, inclusion champions (including at the executive level), and drawing on the organisation’s internal resources including human resources divisions and employees with lived experience. Another success factor was embedding responsibility for actions within and across agencies. For local councils, this often involved including DIAP actions in their Integrated Planning and Reporting (IP&R) structures.
- Disability Employee Networks (DENs): Several NSW Government clusters had DENs actively championing and driving positive initiatives internally. These DENs represent some of the key work being done towards the employment target; however, members reported that the workload could be a significant addition to their substantive positions.
- Impacts: Most agencies were not actively monitoring or collecting data that could demonstrate meaningful outcomes making it difficult to quantify the tangible impacts of their DIAP. Despite this, many narratives of success have been gathered demonstrating the breadth of the groundswell towards inclusion.
What Happened to the Report?
In June 2019, I was working in the Disability Inclusion Team in Communities and Justice; and was not aware of it. It was a turbulent time. The department was in the process of forming through the merging of Justice and FACS, and I was busy. Its presence may have been notified, but it would not have been a priority for me – as a review of the DIP. I will only note that given it contained a lot of comments on DIAPs, it would have been a handy resource for me.
The Disability Council read the review and did not like it, apparently. I can see why. From its perspective it would have lacked specifics and clarity. Now I have designing and implementing a DIAP under my belt, with my other background, the review makes a lot of sense to me. But, I’d have to ask how many people back in June 2019 would have had the experience and knowledge to make full use of the report? As a guess, I’d say I could have counted them on one hand, and would have had fingers left over. In June 2019, I would not have been one of those people.
The problem is that report written by an outsider covering a comprehensive array of themes is useful to insiders who have the background to get the best out of it, but not to insiders who do not have that background. This is a common problem – because the insiders who have the background are often considered to be biased, or hold views that do not sit comfortably with the politics of the governing agency. Also, outsiders don’t know what questions insiders want answered. Even good project briefs don’t provide that guidance, because they are written with presumptions that are not spelled out.
In this case the Disability Council was not the client, so it did not have an effective say in how it wanted evidence to be presented. But the Disability Council was a stakeholder in a very important way. The Disability Inclusion Act specifies that Disability Inclusion Action Plans are to be reviewed by the Council, not a government agency. And these plans are the operational expression of the Disability Inclusion Plan. So, I think it could be fairly argued that the Council should have been the client, or at least a partner with a say in what it wanted to know.
Though this essay is about the Disability Council, I wanted to look at the key findings of the report, and the report itself because they help frame a context for understanding the Council’s role and purpose.
A Place for the Disability Council the Disability Inclusion Landscape in NSW
The Sax report has some very clear messages from the coalface, and it does seem to me that a coordinated response with buy-in at Board level across all public sector agencies is essential to address the issues identified. Resourcing is a key concern across the spectrum of Disability Inclusion activity, and there must be effective advocacy for those resources.
I am concerned that, between the Council, the DIP and the DIAPs (state and agency), as well as a stakeholder forum, several things represent a risk:
- There is no proposed resource to ensure coordination and cooperation sufficient to address the issues in the report.
- The voice of activist stakeholders – the people driving change – may be filtered through bureaucratic processes in a way that will water down insight into areas where urgent change is needed.
- The valuable and scarce resources needed to make things happen – and stay happened – will be spread too thinly across competing interests. Disability Inclusion is like any other domain – there will be competing interests.
I struggle to imagine that the NSW Disability Council is fit for purpose in 2022. I think a sector-wide Disability Inclusion Community-of-Practice, led by active and ardent practitioners is a far better option for addressing issues of NSW policy and practice. Stakeholders from DENs, DIAP governance, Executive Disability Inclusion Champions and other key areas of Disability Inclusion policy, practice and programs would be crucial participants. Support from key community stakeholders would also be essential. I’d also like to see the Australian Network on Disability and PurpleSpace bring their expertise and professionalism to the conversation. I’d rather see such a body sit with Premier and Cabinet than anywhere else – so it has an assured whole-of-government perspective. It must be facilitated, rather than controlled, by government agencies.
If the Disability Council is to be retained, I’d radically prune its notional workload to create a body with a doable mission. This would require a major rethink.
The Council’s Idea of its Future
The Council commissioned a report – the Evaluation of options for increased NSW Government funding to support the NSW Disability Council. The final draft, prepared by the Gegis Consulting Group was completed in March 2020.
The report explored a range of options that included making the Council better resourced, so as to fulfil its range of functions independently. So far as I can see, it’s not online, which is a pity.
None of the recommendations were taken up by the NSW government. I can understand why, as a former bureaucrat. I can equally see why the Council sought to address its patent inability to fulfil its mission as specified in the NSW Disability Inclusion Act 2014.
The Council members who drove the rethink have gone. Their terms came up in 2021, and they were not extended.
Conclusion
To give anybody a workload they cannot fulfill through want of knowledge and resources is unkind – and disrespectful. At best it creates an illusion that something of value is being done – when it is, in fact, not being done anywhere near the extent created by appearances. At worst, it turns Disability Inclusion into an act of charity, where the act of charity is more important than the recipient. The Council didn’t start off this way.
Disability Inclusion is no longer a matter for charity – where those who control the means dole out betterment when and as they see fit. Yet this charity model remains entrenched in how governments continue to think and act. There is a lot of talk and promise of caring, but it’s not yet backed up with action. Getting away from the charity model puts the power to drive change in the hands of people with disability. This isn’t what we have, and it’s certainly not what the Disability Council is – at the moment. I doubt it will be so in the future.
In Canada the national government has gone beyond the old Disability Inclusion battle cry of “Nothing about us without us!” to “Nothing without us!” This is a spirit of genuine inclusion. But I am yet to ascertain whether it is part of the lived experience of people with disability in Canada. That will be the subject of a later blog post.
We need a fit-for-purpose overview of the state’s expression of its commitment to Disability Inclusion. It must be driven by people with skin in the game – those with a sense of focus and urgency. It is easy to look at the good things that are happening and miss the failings because you are too far from the coalface.
If it’s too close to government, it risks being captured by the gravity of process and culture which resists change. The instinct of government is to manage things on its own terms – and to resist being stirred up and made to move things along.
If it’s too far away from government it risks distorting the reality of government processes into being an enemy, rather than an ally who assists the community to become more responsive to Disability Inclusion.
Disability Inclusion within the NSW public sector is at a stage in its evolution where there are two areas of focus:
- Shifting organisational practice to drive Disability Inclusion in deliberate and strategic ways,
- Changing organisational culture to make Disability Inclusion part of the normal workplace experience.
In the wider community, similarly, the changes needed are about practice and culture. In the public sector, businesses and organisations, and in the community the persistence of discrimination, exploitation and abuse is no mystery – and neither are the solutions. The uncertainties concern our capacity and will to do what is necessary. These are not simple uncertainties to be glibly ‘solved’.
The Disability Council has 8 specified functions – 1 of monitoring, 3 of advising, 2 of promoting, and 2 of consulting. Five of the functions are outward looking and 3 directed toward the government – advising. Three functions are ‘fact finding’ – truth seeking. The Council’s function can be described as – monitor and consult, advise and promote. That’s a good recipe for action in partnership with government. Somebody should be doing this – and resourced to do so.
The real Disability Inclusion stakeholders are impatient and demanding. They are critical, even when things look good. If you hold a stake in something it is a thing to be protected and improved in a timely manner – and not when a large cumbersome mechanism gets round to it. Such mechanisms rightly protect resources and processes. That’s their job.
This is not a criticism of government. It is an acknowledgement of what is. The role of a stakeholder is to not accept that the way to do things is set by departments. That dynamic of demand and resistance is a natural and necessary tension. That’s why we have a thing called the Disability Inclusion Act. Business as usual had to be disrupted by legislation. But once disrupted, the demand for change must be persistent.
The term stakeholder is now used too loosely. A person or agency that has an interest in blocking or slowing an action because it conflicts with budget and other priorities may be a called stakeholder, but they also have a conflict of interest which will impede innovative solutions. You can’t have a body of blockers and movers and expect effective action. Smart governments will expose themselves to impatience. The old saying that ‘necessity is the mother of invention’ applies. A stakeholder group of those motivated by the necessity of change will achieve far more than one whose spirit is diluted by members driven by the need to dampen enthusiasm.
The issue of Disability Inclusion is not whether, but how. That means that constraints upon resources must always be challenged – as must the belief that reliance on those resources is a necessity. We do too little of the latter.
We must protect against Disability Inclusion being captured, turning the words of the Act into fine sounding sentiments not backed up with change spurred along by impatient demands for action. A Disability Council suited to our time would be replete with impatient and disruptive activists who are prepared to bluntly tell government what’s not working. A government genuinely committed to realising the ideals of the DIA would, you’d think, welcome frank and fearless comment.
In NSW the Disability Inclusion Plan is a great idea. Its operational expression is via the Disability Inclusion Action Plans. To get the best out of them, they should be reviewed, assessed, and supported to evolve. That can happen only via a competent and resourced body. For me that means including genuine activists who are operating at the ‘coalface’ in NSW government agencies and in the wider community in the majority of any such body. The key word here is “Action”. We need practitioners, not theorists or managers.
You can make up your own mind whether that’s what we have by checking out the Disability Council’s new membership.
This is an important matter. There is not a lavish supply of resources these days, so getting best value from what is available is essential. With the prospect of more ‘consultative’ mechanisms being set up, there is a risk that the opportunity to provide real support and guidance will be squandered in talk fests that create an illusion of action only.
Appendix
2014 to 2018 Sax DIAP Review Key findings
Key findings
- Compliance: All 10 NSW Government clusters and 128 local councils had DIAPs in place, although two local councils had incorporated a short section into their existing operating plans rather than producing a discrete DIAP.
- Legislation: The legislation was seen by most as highly effective in driving the prioritisation of inclusion, increasing awareness of disability and complementing the work of the NDIS. Many stakeholders recognised the confluence of factors that were contributing to great shifts in the inclusion space.
- NSW DIP: The NSW DIP was implemented as planned. Additional funding was available early in its rollout to deliver specific initiatives including media campaigns, human rights training, cross-sector partnerships and the Live Work Play conference, and to create positions in Local Government NSW to support local councils in their planning. These initiatives were perceived to add significant value to implementation and were recognised as creating a snowball effect.
- DIAPs: The documents provide evidence of significant activity in the inclusion space, both in terms of the processes undertaken to develop the DIAPs and the volume of actions documented by agencies. Many stakeholders also noted that inclusion work within their agencies extended well beyond what could be articulated in their DIAP. However, there was also a sense that some DIAPs were not ambitious enough and had recorded activities that may have already been planned in other contexts.
- Consultation with people with disability: This was done across clusters and local government, although lack of resources made it a challenge to do well in some cases. Disability sector agencies and people with lived experience perceived the consultations to be meaningful; although they also reported feeling somewhat overwhelmed by the level of requests to participate in these processes.
- Ongoing engagement: As the process continued, engagement with the sector and people with disability was not always achieved, although several agencies had processes in place to gather feedback and respond to complaints. There were some observations that local government was better at this, particularly if they already had a community access committee to provide input and oversight into the development and implementation of council planning.
- Resourcing: Lack of resources was cited frequently as a challenge for agencies in both developing and implementing their DIAPs. Regional local government areas in particular struggled with the process citing limited staff capacity to support consultation, engagement and planning and fewer financial resources to support the realisation of the initiatives. The Liveable Communities grants helped some local government areas implement smaller scale initiatives, such as installing ‘lift and change’ facilities.
- DIAP implementation: Critical to successful implementation were good governance, inclusion champions (including at the executive level), and drawing on the organisation’s internal resources including human resources divisions and employees with lived experience. Another success factor was embedding responsibility for actions within and across agencies. For local councils, this often involved including DIAP actions in their Integrated Planning and Reporting (IP&R) structures.
- DIAP reporting: Reporting was widely recognised as problematic. With little guidance provided, stakeholders agreed that reporting was largely anecdotal, giving little sense of impact or outcomes. Stakeholders commented that agencies had not reflected on their DIAP enough, particularly in terms of areas for further work, and there were concerns that there was little documentation of the challenges and limitations they faced. The need to carefully design and manage reporting requirements so as not to overburden agencies was also identified.
- Supporting structures: FACS, Local Government NSW, and the DIPIC were seen as useful resources and facilitators for planning and implementation. Some stakeholders felt they would have benefitted from more support, whereas others felt they required less as they were already leaders in the inclusion space. Some stakeholders said they would have liked the Disability Council to play a greater role in reviewing and monitoring DIAPs and holding agencies accountable; however, it was also recognised that the workload associated with this role meant that without additional resourcing this would not likely be feasible.
- Disability Employee Networks (DENs): Several NSW Government clusters had DENs actively championing and driving positive initiatives internally. These DENs represent some of the key work being done towards the employment target; however, members reported that the workload could be a significant addition to their substantive positions.
- Impacts: Most agencies were not actively monitoring or collecting data that could demonstrate meaningful outcomes making it difficult to quantify the tangible impacts of their DIAP. Despite this, many narratives of success have been gathered demonstrating the breadth of the groundswell towards inclusion.
The full report can be found here