This session was part of the NDIs and Advocacy conference held in Geelong on 4 December 2014.

Sharon Granek, Program Manager, Women with Disabilities Victoria (WDV), held an interactive discussion with audience members about what kind of tools and information women with disabilities need in navigating the NDIS. This will inform the work of WDV in preparing fact sheets and other tools for women with disabilities in Victoria.

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Transcript

DIANE WHITE:
My name is Diane White. I’m the VLAF project officer. VLAF is the Victorian Legal Assistance Fforum. That’s the organisation that brings together the eight main legal assistance providers in the state.

Underneath VLAF, there are a number of working groups and the BDAN group, Barwon Disability Advocacy Network, is one of those groups.

Today i’m going to be moderating this session here with Sharon Granek. I’ll give you a little bit of a very quick briefing on Sharon before we launch right into it, because we’re a bit pressed for time.

Sharon comes from Women with Disabilities, where she is the Program Manager. She’s worked for a number of years in community development in various capacities, but always in the field of diversity, case management, residential and respite care, policy development, housing, education, training, employment, public health and advocacy, so she’s done everything by the sounds, and she’s got a masters’ in human services and public policy and she’s completed a number of research reports.

So she’s going to be today running this session on what women want, looking at how specifically the NDIS can cater for women. So i’ll pass over to you, sharon.

SHARON GRANEK:
Thank you, and I hope you don’t mind but I need to take notes because WDV are going to be developing fact sheets for women and I need to know what you need to know, so that’s what the idea of today is.

We haven’t got much time, so I’ve left a piece of paper on all the tables. Please put your name and your contact details that I can contact you if you want to give me more information and I can send you the notes of what we’ve decided we’re going to do.

We are going to hold some more focus groups later down the track, and if you want to be part of those focus groups, please put your name down and we will contact you. This is not going to happen overnight. It’s going to be about a three month process, but we want to make sure you’ve got the information you need, and hearing today there’s lots of things we don’t know yet, so we need to make sure that you know when you finally get a package.

I’ll just tell you a little bit about WDV. We’re a state-wide not-for-profit organisation. We started in 94 to raise the awareness of women with disabilities. Our work addresses issues that are particularly relevant to women with disabilities. Our vision is for a world where all women are respected and can fully experience life.

And that means a mother with multiple sclerosis can get the support she needs to look after her child. A fifteen-year-old girl with cerebral palsy who wants to finish secondary school can actually think about going to university. A woman with an intellectual disability who reports sexual assault or rape will be taken seriously by the police and the offender will be charged. Health workers will be competent and confident in talking to women with disabilities about their health concerns, and schools and disability services will actually provide useful information to all students and clients about healthy relationships and sexual health promotion. And women with disabilities can be competitive and get paid for work they do, and get a job and get decent wages.

So we’ve got a bit on our plate, and I think we’re making progress which is really exciting but we’ve got a long way to go.

Now why am I here today? Women fare much worse than other women who don’t have disabilities and men with disabilities. We’re discriminated against because of gender inequality where it intercepts with disability.

Men and women are different. Our experiences, needs and priorities are different. Now under the NDIS, women with disabilities have a right to expect gender-sensitive services. We have a right to good health, personal safety and sexuality has to be recognised by these services.

We’ve been funded by the (Gwosh?) Foundation to produce a series of accessible fact sheets and a video so women with disabilities as users of the NDIS know what to ask for and know what to expect.

This session I’ve divided up into three areas that I think are important, but we can look at that. I’m going to look at the assessment process, service delivery and complaints process.

I need your help. I need to know, if you were part of the trial or if you weren’t part of the trial, it doesn’t matter. I need your input.

What did you need to know at the beginning of the whole process and what would you like to know at the beginning of the whole process that you weren’t told but you found out later. What would help you? What did help you as part of the pilot, and what else would you like to know?

What we’re hoping is that we can provide information to women with disabilities, how the NDIS can improve your life, what questions you need to ask or should be asking of a service to make sure it’s the right service for you, and we want to develop a checklist. If you’re going to visit a whole lot of services that might be providing services, what do you need to look for in that particular service? So we’re going to develop a checklist for you.

We haven’t got much time, so I’m going to walk around and make sure that everyone gets a chance to be heard. I’ll have the mike with me. Are there any questions at the moment?

Okay. First part is the assessment process. What has been your experience of the NDIS so far? I want to know about your journey from being assessed, receiving the package and choosing which service to use. Some of the things I’ve thought about is, did you have an idea when you first started what you wanted? Did anyone help you? Did you get what you asked for? What worked well in that assessment process, and what didn’t work so well, and why do you think that happened? So just think about the assessment process, what were some of the issues? And if you just put your hand up, we’ll make sure that you get heard.

Has anyone been part of the assessment process so far? Does anyone know what to expect in the assessment process? That tells me a lot. We have to make fact sheets to tell you from the start what is the assessment process about?

CONTRIBUTOR:
Thanks, Sharon. I’m Pauline and I’m an advocate, so no, I haven’t been involved in the assessment process, but I’m gathering from listening to the people in the other room earlier that one really important thing is to take an advocate with you to your very first appointment.

And the other thing that was talked about was with planning, if you know ahead of time what the categories are in the plan, that gives you a clue the sorts of things they’re funding and you can start to develop your ideas and your thinking around the things that are already being funded.

That doesn’t mean you shouldn’t push for whatever you think you need, because that was the other big message. Work out what you need for your goals and go for it. And you need to be able to demonstrate – because the other thing they were saying is they knock back things if there’s no evidence, so if you can trial things and prove you need it, they’re more likely to agree to fund it.

So I think, my ideas are, just based on what they were saying, because no I haven’t been through it, but the other thing I know is that the only advocacy that’s been funded specifically around the NDIS is the external merits review, and what they were saying in there, and I checked with the person from the external merits review group down here in Barwon, they’re only funded to deal with the second level.

So that first level, the internal appeals, they’re not funded to do that. They don’t do that, but you have to go through that first. So all the advocates who are here, it’ll be you who has to help people go through the internal stage of the appeal, and none of us, I don’t think anyone else has been funded additional money to deal with the whole process, but it’s going to be vital because they keep saying, take an advocate with you.

So I spoke to the Barwon group. Their ordinary advocate, who didn’t get funded anything extra, had 60 extra cases this year just doing those.

SHARON GRANEK:
Thanks Pauline. Who has any idea what the assessment process involves?

CONTRIBUTOR:
Hello, this is Adrian Harper speaking and I work at Able Australia as a case manager there, and this is just a guess, when I speak to the different clients about NDIS and what that might look like.

We start with a discussion about what do you have now? What’s working for you now? What’s not working for you now? What would you like to see? And a discussion of, okay, you have this many hours of support or you have no support. How is that beneficial? How is it not? How have you improved in this way versus how have you not improved? So maybe going in with that in mind.

SHARON GRANEK:
What do you think you would like before you even start the assessment process? What sort of information do you think you need to know? Would you like information on the types of packages that other people have got? Would you like to know what can and can’t be included in the package?

CONTRIBUTOR:
It’s Robyn. I’m potentially going to be a participant in the future and I want to know who can I bring with me to the planning meeting, because we’ve sort of got a few mixed messages today from various speakers about who people recommend we should bring, and there’s a difference between who do you recommend and who can we bring?

SHARON GRANEK:
That’s a really good point.

CONTRIBUTOR:
Just in relation to that and advocacy, there’s two things. One, if we look at White Ribbon and what that has an effect on women, and women with disability and just the treatment of women in general, I think advocacy going into these things is crucial and they are so under-funded I don’t know where we are going to get all these advocates from that they talk about at every process that they go through, so I think that’s a huge issue for people in terms of actually starting the process of applying.

DIANE WHITE:
SHARON, THIS is Dianne. We’ve got about ten minutes. It is a short session.

CONTRIBUTOR:
Sue from the Self-Advocacy Resource Unit. I just know, talking to some of the groups, particularly people with acquired brain injury, I think they’d like information before they even got to the assessment process about what information they need to get together, because they’re starting to talk about do we need to go and book in where there’s a huge waiting list for neurological assessments to take that with us to the assessment process. So what information do we need to get? So I guess it’s about – I don’t know how big your funding is – information sheets with specific things relating to the different disabilities about what they need to do to prepare for it.

SHARON GRANEK:
At the moment, this is a wish list, so nothing’s out of the question, and there was a comment over here from Michelle.

CONTRIBUTOR:
I think one thing that makes me concerned about NDIS, as I said before, it’s really hard, particularly for some of the people who will make or help people to put packages together etcetera,

I’ve two concerns. One that there’s a person who is deciding yes, they’ll fund X, Y Z, many of whom have had no to little experience with Deaf-Blindness. I think also too it’s really important that we as a community get out there to try and teach some of these people. Government being government you’re dealing with one person one day, and next thing all your hard work comes to pieces because they’ve changed offices or you have to start the whole process again.

Another problem I fear is that, as we spoke a couple of weeks ago in a community forum we had, if a Deaf-Blind person is not aware of the services and the package they can put together, they’ll only get what they ask for. Some people won’t ask for much, and they will miss out.

That’s something that does concern me, and it goes back to that factor I spoke about earlier on is that the complexity of the language of the NDIS. And also too, I have to reiterate what Jackie said before is that part of the problem with our group is that they keep running out of money to provide appropriate interpreters so that we actually have to cancel meetings, cancel meetings, cancel meetings.

I think Trudy is here with us and I think Trudy can share, who is also a founding member of Deaf-Blind Victorians along with Heather Lawson. We actually have to keep cancelling meetings. We also want to involve other women who are Deaf-Blind, but unfortunately we don’t have the funds to do this. Oh God, there’s so much we still need to do, and I have to wrap up.

SHARON GRANEK:
Sorry to cut it short but we’ve only got ten minutes left and we’ve got a bit to go through, but you have the chance to have more input later.

Okay, the service delivery. What do you think is important to you as a woman in the service? What’s important to you if you’re a parent with a disability? What would make a good gender-sensitive service? What did you look for, because no-one’s here that’s on the package already so it’s a bit hard to say, but when you’re using services, what do you look for in a service and how might that service be different to you as a woman and a man? And if you didn’t get what you asked for in the service if you were on a package, what would you do about it?

So there’s just some questions. Any thoughts on those things? Anyone who’s getting a support service, regardless of a package or not, what do you look for in a service as a woman?

CONTRIBUTOR:
Flexibility.

CONTRIBUTOR:
I’m with ASPECT, the Autism Family Support Association, and one of the big things of concern for families is a lot of the services now, because of the lack of what they involve, parents are actually supplying part of the services for a person.

Often these aren’t being factored into or considered because people consider them as part of their everyday life. Without an advocate to be reminding that these need to be factored in under this new system as well, especially where parents are ageing and what’s going to happen when they can’t supply these and there suddenly becomes a big gap for a person?

SHARON GRANEK:
What I’m hearing is we need to make sure we all advocate so the advocacy services don’t disappear and are funded properly to deliver the services. I’m hearing that really loud and clear.

If we created a checklist of what to look for in a service, what should we include on that checklist?

CONTRIBUTOR:
Well, that the person is feeling safe who receives the service.

CONTRIBUTOR:
That they’ve signed up to the IGUANA protocol, which is the Office of the Public Advocate protocol on how services should handle situations where abuse and neglect occurs for clients.

SHARON GRANEK:
Sorry, signed up for what protocol?

CONTRIBUTOR:
It’s called the IGUANA protocol. It’s short for a longer term, but don’t ask me what it is. But it’s basically steps that any service can go through if a client is abused or neglected to make sure that first of all the person with a disability is safe etcetera etcetera etcetera, and those guidelines were developed with the CASA services to make sure that it takes into account the needs of women when there’s been violence.

DIANE WHITE:
Got about 3 or 4 more minutes, Sharon.

SHARON GRANEK:
Okay, there’s one more over here and then we’ll just go onto the last bit and wrap up.

CONTRIBUTOR:
I’m thinking that it would be important obviously as one of your major identities being female, being a woman, but also to look into how your identity as a woman interplays with your intersecting identities within the community, within your family etcetera.

So “I’m a woman but I’m also an X Y Z which has impacted on this by being a woman.” So it’s that conversation about what else does your identity mean to you and how should we include that.

SHARON GRANEK:
The one area that really concerns me that we were hearing today was the complaints process and how little we all knew about it, so that rang real alarm bells to me that we need to produce information, because it’s not out there, or it’s not getting to the people who need it. So that’s one area we’re really going to have to spend quite a bit of time on looking at.

Other things in our checklist like do you look at the gender of your disability support worker? Is that important to you?

CONTRIBUTOR:
It’s important to some. I was an advocate for a lady from a Turkish background and she felt very uncomfortable with a male interpreter even and requested a female interpreter.

SHARON GRANEK:
And also for some women, and I guess for some men, it’s really important the cultural, they have a good understanding of your cultural background so they can consider that. I think we heard that loud and clear from Jody about the things that are missing for her as an indigenous woman. So that’s important and I think we might include it on the checklist as well.

CONTRIBUTOR;
And language appropriate as well.

SHARON GRANEK:
Language appropriate. We’ll include that.

Okay. I’ve probably got two minutes left. Is there anything else you think would help you through this whole process, that you would like information on, that you don’t know if it’s available or would make it simpler for you to navigate through everything?

CONTRIBUTOR:
Well, a full list of services so that you actually know what supports are out there. A lot of people are not aware of what the services that are out there, so they don’t know what to ask for, basically.

CONTRIBUTOR:
There’s a lot of talk today about different organisations putting different fact sheets and information up on their websites, but if there was an advocacy organisation that could be a central point to actually link all of those websites together for people.

SHARON GRANEK:
I actually see that as DARU’s role, that all the advocacy organisations we could send…

(inaudible)

No, because DARU is the resource organisation for all disability advocacy organisations. That would make sense that they would be the central point.

I’ll start wrapping up. I’ve got some cards here. If you’ve got more things to add, please let me know. Please put your name, address, email contact details on the form I’ve left on every table, because this is just the start of the process.

We want to get an idea – we’re going to be holding a lot more of these focus groups, and as I said, if you want to be involved, we’re setting up a project advisory group, because we want to make sure we get the information that you want in the format you want and make sure we get it right.

DIANE WHITE:
Okay, great. What I was going to suggest, too, Sharon is I’ll leave out the sheets, so feel free to write down in the break or later in the afternoon any other comments you may have under those headings or under other headings.

And the other thing, just addressing that question or the comment down the back there about the central list of services, there is the brochure that we launched today which has a list of all the different advocacy services in the Geelong region.

So I’ll just quickly thank Sharon. I feel very bad because she obviously put a lot of work in and it was a very short session, but I’m excited about what she’ll end up coming up with.

So perhaps if we could just put our hands together and thank Sharon that would be great.

 

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About Sharon Granek

Sharon Granek is the Program Manager at Women with Disabilities Victoria (WDV). She has worked for many years in community development in various capacities but always in the field of diversity, including case management, residential and respite care, policy development, housing, education, training and employment, public health and advocacy.
She has a Masters in Human Services and Public Policy and has completed two research reports: The Accommodation Needs for People with Huntington’s Disease, and Housing for Life – Planning for Accessible and Adaptable Homes in Victoria. Sharon helped to establish and was the first coordinator of the Disability Advocacy Resource Unit (DARU). More recently, she was a member of the Project Management Team at WDV that oversaw the Voices Against Violence Research Project – a cross sector partnership with the Office of Public Advocate and the Domestic Violence Resource Centre Victoria that investigated what happens to women with disabilities who have experienced violence in Victoria. Sharon is also a parent of two adult children and is a woman with a disability.