Disability Advocacy by the Numbers 2012-16 Report Launch

This session was part of the Advocacy sector Conversations forum held at the Queen Victoria Women’s Centre on 18 May 2017 in Melbourne. Other sessions at this forum included:


Llewellyn Reynders, Policy Manager at VCOSS, showcased Disability Advocacy by the Numbers report that uses the data collected by the Victorian Office for Disability advocacy program through the Quarterly Data Collection (QDC) provided by organisations funded under the program.  He stepped us through the advocacy issues and identified trends through graphic representation and analysis.




References mentioned in  this session:




Good morning everyone.  My name is Melissa Hale and I’m the Coordinator of Disability Advocacy Resource Unit.  It’s great to see you all here today.  Our forum today is being held on the traditional land of the Kulin nation and I wish to acknowledge the traditional owners.  I would like to pay my respects to their elders past and present and the elders in our community here today.  I would also like to welcome those who have joined us online.  Just a reminder to those who are watching online, please feel free to message your questions for our presenter today and I will ask your questions on your behalf.  The number will be displayed on the screen for you to see.

Some general housekeeping before we start.  If you need the toilet, they are on both sides of me and there is another toilet downstairs.  In the event of a fire a fire warden will attend and provide instructions on how to exit the building safely.

Today the agenda will see our conversation about a new project with the Office for Disability about our Disability Advocacy By The Numbers Report.  Later on, we will have three sessions on family violence and people with disabilities, child protection and plan management options in the NDIS.  At the end of the day, we will also have an update from the Office for Disability.

So we worked with the Office for Disability to produce Disability Advocacy By The Numbers Report, which looked on the data and trends observed across advocacy agencies in Victoria.  I would like to invite Llewelyn Reynders, the Policy Manager at VCOSS who is also a big part of our DARU team to present on some of the findings and next step to this project.  Please welcome Llewelyn.

Good morning everyone and thank you very much for that introduction Melissa.  I’ll just wait one moment while we get the power point up.  I wanted to really spend today telling you a little bit about our Disability Advocacy By The Numbers Report and some of the issues we’ve encountered in that report regarding data collection in the disability advocacy program.  We’re really interested in having a longer conversation with you and your managers about how we can better collect data so that we can get the best information about disability advocacy and the difficulties people with disability are experiencing so that we can use that information to better inform our advocacy and better communicate to Governments about what is happening in the community.

So what we have been doing is every quarter disability advocacy agencies will report their data through the quarterly data collection process to the Office for Disability.  What the Office for Disability have done is aggregated that data so it is de-identified and aggregated, and given it to us to present in a report.

Now we’re at the moment finalising that data, we’ve just had some last minute data changes that we need to incorporate.  But what I want to do today is give you a bit of a sneak peek about what that data is beginning to tell us.  Also talk I guess some of the difficulties we’ve had with the data in the hope that we can have a broader conversation in the coming months about the best things to collect data on and the best ways of reporting that data.

To help inform that on your tables you will find the supplementary data report that we have produced.  It’s still in draft form but we did want to give you a copy so you can start thinking about some of the issues that we will be talking about today and in coming months.  I do want to give you a bit of a snap shot about what the data are beginning to tell us.  This won’t be in the report you’ve got but will be in a report we will produce and circulate to you in the coming weeks.

So disability advocacy organisations funded by the Victorian Government see over 800 people every quarter, in every three-month period.  About half of those people are clients new to disability advocacy services.  What we see is there are slightly more male clients than there are female clients.  We’ve seen over the last four years because we have four years of data to present to you, a rising number of young people accessing disability advocacy services and that trend has been quite stark in the data we have so far.

We also know that around 4% of our disability advocacy clients report that they are Aboriginal and Torres Strait Islander people and around 10% are reported to be from culturally and linguistically diverse backgrounds.  So in terms of a quick snapshot about what some of the data are telling us they’re some of the headline findings.

The other data we have is in your quarterly data reports you will nominate which advocacy issues people are presenting with.  What we see is that some advocacy issues are far more prevalent and common than others.  The big two, which are over 20% of the issues reported through the data collection, are disability services in the NDIS and education.  Those two issues make up over 40% of the issues reported amongst your clients.

The other significant ones we see is accommodation issues at just over 10%, legal issues also at about 10% and health issues which is approaching 10% as well.

Those five top issues make up nearly three quarters of the issues that clients are presenting with.  So we collect data on around a dozen different issues but five of them really stand out as making up three quarters of the issues people are presenting with.  I will note these data aren’t final.  Those numbers may change slightly once we’ve produced the final report but it gives you a good indication and they won’t change a lot.

By the way, if anyone has questions or comments during the presentation I am really happy for you to ask questions while we’re going or make comments while we’re going.

The other thing that’s worth noting is the gender split of disability advocacy clients.  What we see is just over a majority of clients are male, which is interesting because we know among people with disability women are slightly more likely to have a disability and yet the clients that are presenting at disability advocacy organisations majority are men.  That’s an interesting difference that we’ve seen in the data.

The other interesting difference we’ve seen is the age group that are presenting to disability advocacy organisations.  Among people with disability according to the data, we have from the Australian Bureau of Statistics around 40% of people with disability are aged over 65.  But we see that only around 5% of clients presenting to disability advocacy organisations are reported to be over 65.  There is a big difference in that particular age group between the people that have disabilities and the people using disability advocacy services.

In other age groups, they’re all well represented and in fact, there are quite a number of young people with disability using disability advocacy services.  But in older age groups, we see the reverse.

We will present more data in more detail just once we’ve finalised it in a full report presenting you with all of the data that we have that you’ve reported through this process.  As I said, we have four years of data so it’s actually quite a rich data source.

We also wanted to talk to you about the quality of that data and the suitability of that data, because there’s an opportunity at the moment both with the recent review of the disability advocacy program conducted by the Victorian Government as well as the Victorian Governments response to the abuse and neglect enquiry, which included a commitment by the Victorian Government to review the data collection process.

The report you’ve got in front of you it is a draft report but it won’t change substantially once we’ve produced the final report, starts to outline some of the issues we’ve discovered in collating this data.  Some of those key issues are there’s a lot of missing data.  What we notice is that many agencies aren’t fully reporting on all of the items in the data.  So for example, we only have gender data for about 60% of clients.  The other 40% their gender is not recorded in the reports that are coming back to the Office for Disability.

Similarly just under half of people are not having an age group recorded for them in the data that’s being sent through to the Office for Disability.  We see that across categories in the data collection process.  That limits very much the accuracy with which we can interpret the data and our ability to draw conclusions about what is happening in the community for people with disability who are using advocacy services if we don’t have the complete data set to interpret.

We’re really interested in opening a conversation with you about what some of the challenges in completing the data might be and how that process might be changed so that we can get more complete and more accurate data.

Another issue we’ve found is the current way data collected means we’re collecting data on the same people over and over again.  Because the data is collected quarterly, quite often, you might be assisting a person for many many months’ even years but the reporting process requires you to report on those people every three months.  So that creates a number of difficulties for us in adding up the numbers that we have because if we add them together we will be counting the same people twice because they’ve been required to be reported over and over again.

We think there’s some useful discussion about how we might reduce the reporting burden for you not having to report the same people over and over again as well as giving us a stronger data set that means we can add up the numbers and get a total for a year or for many years without counting people twice.

We have also noticed that some of the questions that are asked of you to report on can be quite difficult to interpret.  So for example, one question asks you to report how many culturally and linguistically diverse clients you are seeing.  But what counts as a culturally linguistically diverse client?  How do we determine that?  Who is deciding, who is counted as culturally and linguistically diverse or not?  So we think through a number of the questions we need to be clearer on what data we’re actually looking for and how we decide whether a person fits into a category or not.

Another example is these advocacy topics.  If a person comes to you and says I need to leave my home because I’m experiencing family violence which category does that fit into?  Is that an accommodation issue, is that an abuse and neglect issue, is that a gender issue?  It’s very unclear for me anyway about how we decide how we’re categorising advocacy issues.  That means it’s unclear when we say 10% of the issues are accommodation issues, what is that including and what is it not including?  So we think there’s a useful discussion in saying how do we categorise different advocacy issues and what is included in the category and what isn’t.

Which brings me to the final point we don’t know in this data whether organisations are interpreting the questions in the same way.  There are some interesting differences in some of the data from quarter to quarter where we see drastic increases and decreases in a particular topic or issue.  We wonder if everyone is reporting the issues in the same way, which is giving rise to those very lumpy data that we’re getting in some of the data sets.  You’ll see that in the final report when it comes out.

So what we’re proposing and we will come back to you in the coming months and ask these questions in more detail.  But certainly, we’ve suggested that we need to have a conversation about clearly understanding why we are collecting data, why you are filling out all of these forms every three months and what is being done with the data, what’s it for.  We think that we need to sit down and really provide some very clear questions and clear guidance on what those questions are so that we can ensure that everyone is collecting the same data in the same way so that we can meaningfully interpret the data.

We think we should have a look and make sure that we’re not asking you or you’re not being asked to collect the same data and report it over and over again.  We think there are probably some clear opportunities to reduce the reporting burden on you and not having to report the same clients every three months over and over again.

Finally, we think there’s some opportunities to collect the data in a way that is easier for you to report and make sure that there are some checks and balances so that the data that you’re reporting is meaningful.

I might just stop one second and ask if there are any questions that people have at the moment or even any comments on data collection that people have.

We have one question online and they said can we collect data on disability support pension application and appeal?

That’s a very good suggestion and in fact, it picks up on a suggestion we’ve made in the report.  You will see on Page 2 and 3 of the report we’ve actually set out some of the options we’re suggesting but more than happy to hear other options.  One of those is that we actually have no category for financial issues.

Certainly some of our discussions with disability advocacy organisations reveal that quite a lot of clients are often presenting with issues around the disability support pension or issues with their financial management or issues with who is controlling their money.  But we actually have no category for reporting those issues.

Again, it’s a very good suggestion because we really need to go back and look at well what are the issues clients are facing because we think there’s room for improvement in actually categorising what different advocacy issues are.

We need to wait because of the online people.

I have a similar question in terms of NDIS, are you hoping to get more specific data on the types of issues people are coming to you with?  I see it there NDIS but it could be accommodation, transport, it could span a lot of sectors.

It comes to another point that we’ve raised in the discussion paper which is again particularly in an NDIS environment where the NDIS is actually funding an awful lot of these things.  So when we categorise an issue are we categorising it about the agency that we’re dealing with or are we categorising it about the cause of the problem?

Again, it’s another important point for the discussion is what’s the best way of capturing an issue is it well we’re talking to the NDIS so therefore it’s an NDIS issue or is it we’re actually talking about a person’s access to health care so it’s a health care issue.  At the moment it’s really unclear.  You just have a list of topics and you’re expected to put numbers against them.  It’s a very valid question and I think one that we need to discuss in more detail.

I would like to make a comment on disability advocacy data collection.  You were talking before about the fact that it seems to be always the same people who are we are collecting the data from and that really I completely agree with that because that happens even with our program.  I think the reason for that is because a lot of people need support for a long period of time and the other reason is because the people who you advocacy servicing are always going to be the one who come back again.

It’s difficult to get new people to come.  I think sometime there needs to be more awareness and support for people who have never used an advocacy services or self-advocacy services.  I’m thinking for example about people who come from a cold background.  They need more support to change the perception on the fact that we are there for them.  We are there to support them.

Thank you Christian you raise a couple of good points.  Firstly, yes we believe there are probably better ways to reduce the reporting burden rather than reporting the same people over and over again.  But the other issue you raised is actually really important as well which is how do we capture a useful measure of the work that you’re doing, even if it is seeing a client for a very long period or if you are getting a person who has previously come to your service with one issue and actually comes back and asks for assistance with a different issue.

Our current reporting mechanisms aren’t able to capture those distinctions and we have a number of options in this discussion paper around well should we be looking at capturing data on the number and length of advocacy cases rather than just counting the number of people that an organisation is seeing, which could be an interesting – is one possible way of being able to unpack the complexity that you’re talking about.

Also I think the related point there is also how do we as a sector communicate our services to a broader audience.  I think that’s a really important point for us to think about as well including through other mechanisms.

I’m hoping you can say a little more about the legal category and what would be included in that.  I’m particularly interested as a later speaker today about whether that would include people who sought advocacy in relation to child protection issues but also does it include for example VCAT applications, state trustees, guardianship and advocacy and do you have an idea of the breakdown?

The short answer is no because and is related to the same issue, there is no guidance about what is included in this category.  It’s left to the judgement of the particular service or the particular person filling out the form about what is included in which category.  The cases you mentioned are precisely some of those ones where it’s really unclear.  Is a child protection issue a family issue or a legal issue?  There is no clarity around who is reporting what in each category.

My name is Angela I work for the Department of Education I’m also a member of Citizen Advocacy in Sunbury.  My question is similar to the previous one and it’s about the education issue.  I’m just wondering if that is broken down into early childhood education, primary and high school, vocational education and training at Tafe and higher education at University.  Is that I guess classification made in that broader heading of education?

The answer is the same which is no but it also raises an interesting other point in that there’s always going to be limits to the amount of detail a data collection process can identify.  We’ve actually been thinking about this at DARU as well and thinking about well what other opportunities are there to actually dig a bit deeper into the data and say well what are the issues that are presenting in these boxes.

We’re having a think and hoping to be able to perhaps roll out another process where we come back to disability advocacy agencies and have a conversation and saying this issue is coming up a lot, can we talk to you about what’s the detail of those issues and then be able to provide a perhaps a more qualitative report that actually says, here are the things that people are coming for advocacy support about and here are the barriers that they’re experiencing.

My name is Vi from Gippsland.  I have a couple of comments but there is a couple of things here that concerns me.  If we could go back to the area where we had to record new clients or the older clients that you’ve been supporting from the last quarter.  It doesn’t say or hasn’t captured what the issue is.  It just says how many clients are you supporting in the last quarter.  It would be good to identify what particular issue those clients from the past quarter is continuing and then maybe we can direct a support.  It would be good to capture those issues, those problems because if it’s been going for long there is some need to be attended to.

My second question, go back to the reporting of the age group.  There is a big gap between 25 to 64.  It doesn’t capture those aged in the 30s, 40s and 50s.  When you look at it you think where would it fit these clients in this particular age.  It’s just a big gap 25 to 64 and then the 65.  Those were just two points I just wanted to put forward.

Thank you Vi I’m really pleased you raised that later point because we’ve made a very similar recommendation about that exact fact, 25 to 64 is a massive age group and really doesn’t give us a lot of detail.  One of the recommendations we’ve made or options we’ve presented is to actually segment that in more detail to give us a better idea about the age spread of people using services.

On the first point, again we get back to the issue of trying to distinguish between counting the number of people and actually trying to understand how many cases are going on and how long are those cases taking.  I think there’s some opportunities there to have a think, both around what data is recorded but also how difficult that will be for organisations to report.

We’re very aware, we don’t want to make your lives harder by asking for data that is very difficult to generate.

It’s also in the area of recording disability.  Say for instance as an example it’s someone with a physical disability and it’s been having these issues for quite some time from last quarter to this quarter then it’s not captured.  To look at it it might be to do with housing or accessible or someone with an intellectual disability that’s different issues they face that person with intellectual disability but it’s been continuing on for – being reported in the last quarter and it’s still going on to this quarter.  It’s not capturing to see why is there services, is there a gap in there for the services to provide that need.  I hope I make myself clear.

I think it’s a really important issue that we need to think about in this.  Look the other point I will make that is related is while there are questions in the QDC form about the type of disability we haven’t been given that data to present to you.  And we think there is similarly a useful conversation to talk about about whether those categories are right, whether that’s a useful thing even to do is to try and classify peoples disabilities.  Because once again, we can get better information about who is experiencing what type of issue if we do that.

I’m very aware of time so I might quickly jump to the end.  But thank you for that feedback, that’s been really useful and I’m particularly pleased that so much of it reflects some of the recommendations that we’ve produced in the report.

In terms of a process going forward, there are a number of questions we’re really interested in discussing with you in the future and they include really what do we want to know about disability advocacy and what are the best ways of capturing that.  We’re really interested in talking to you about how organisations actually capture the data do you do it through your intake process, do you do it through other processes, do you do it through case note reviews.  There is a lot of ways that organisations might do that and it might vary from organisation to organisation.

We’re interested in whether more of the information should be made available to be made public.  We have a subset of the data that we’ve been allowed to publish but we’re interested in a conversation about whether more of it could be provided.  We’re interested in having some detailed design questions about how do we word questions so that we get consistent interpretation and consistent numbers from different organisations.

We’re also interested in how we report systemic advocacy, group advocacy and self-advocacy activities.  They’re currently not well captured in the reporting that is done.  A lot of it is focused on individual advocacy.  We’re interested in having a conversation about whether there is better ways to capture that information as well.

Finally, we are aware that the Victorian Government has made a commitment to looking at measuring demand for disability advocacy as well as outcomes of disability advocacy.  There might be some really fruitful conversations about how to do that.

I am aware I’m eating into Alison’s time so I will wrap up very quickly just to say we are at a moment in time because of the processes that have been going on to have some success and take hold of some opportunities at the moment to really improve this process so it’s easier for you so we get better data and so that we can kind of advance the cause of disability advocacy both within Government and the general community.

Thank you so much for listening.

Thank you very much Llewelyn for that and we will be in touch in the coming months to do this together with you.  It’s a group effort it’s your organisation we want to report on.  You will be hearing from us soon.



Advocacy Sector Conversations Forum

Date published:
Thu 18th May, 2017