This session was part of the Advocacy Sector Conversations Forum series held on Zoom on28 October 2021.
Overview
The way we think about housing has changed rapidly with the development of Specialist Disability Accommodation (SDA), and in relation to supports, Supported Independent Living (SIL). Join Jamie-Lee Dwyer, Belinda Aitken and Cathy Bucolo, the Summer Foundation’s Lived Experience Team and Clinical Practice Lead to hear their experience of SDA and SIL as they share some hot tips and what they’ve learnt so far. They’ll talk about the National Disability Insurance Agency’s person-centred approach to planning and decision making as outlined in the ‘Home and Living Supports’ policy, how to apply, what evidence you need, and getting the language right.
Links and downloads for resources mentioned in this session can be found at the bottom of this post.
Audio and Transcription
MELISSA HALE:
Good morning, everyone. Welcome to the last session of the October 2021 Advocacy Sector Conversation series. My name is Melissa Hale and I’m the Coordinator of the Disability Advocacy Resource Unit. I would like to begin by acknowledging the Wurundjeri People of the Kulin nation, the traditional custodians of the land on which I am coming to you from today, and pay my respect to their elders past, present. I extend that respect to all First Nation people here today.
Once again, we are delivering the Advocacy Sector Conversation forum to you online. We hope at some stage soon to be able to deliver this series to you face to face when it is safe to do so in an inclusive and accessible way. However, we hope you have all settled in comfortably and are ready to settle in for the last session of the series. We encourage your active participation today. So please type your questions in the Q&A box and at the end of the session, I’ll be facilitating a Q&A session with our presenters.
The last session for this year which is on Supportive Disability Accommodation and Supported Independent Living Packages. Your home, your life, your choice. The way we think about housing has changed rapidly with the development, the development of specialist disability accommodation, and in relation to support, supported independent living.
Join in me listening to Jamie-Lee Dwyer, Belinda Aitken and Cathy Bucolo from the Summer Foundation to hear their experience of SDA and SIL as they share some hot tips and what they’ve learned so far. They’ll talk about the National Disability Insurance Agency person-centred approach to planning and decision making, as outlined in the Home and Living Support Policy, how to apply, what evidence you need and getting the language right. So, please give a warm welcome to Jamie-Lee, Belinda and Cathy.
BELINDA AITKEN:
Hi, everyone, and thank you, Melissa, for that lovely welcome. And thank you all for having us here today to talk with you. My name is Belinda Aitken, and I’m the Lived Experience Facilitator at the Housing Hub. I have lived experience in finding my own housing and living independently and I had always wanted to have my own place as most people do when they reach adulthood. But I have resigned myself to this never happening for me. That wasn’t until a chance encounter with a social worker, at a Melbourne Hospital who told me about specialist disability accommodation. And as a result of that, I now live in my own apartment in Melbourne’s inner city and have access to the support and community that I need to live the life that I want to.
But even after moving into my new apartment, that journey hasn’t always been easy for me. And I will discuss that further later in this presentation. But for now, I’ll hand over to Jamie-Lee Dwyer to tell you about her journey.
JAMIE-LEE DWYER:
I am Jamie-Lee and I live in my own SDA, and I love it. At one point, I thought I couldn’t move but I am so very glad that I did move at the time I did. They let me know about that later on. Now, I would like to hand over to Cathy. Cathy?
CATHY BUCOLO:
I’m Cathy Bucolo. Great. Just checking that you could see me. Yes, I’m Cathy Bucolo. My role at the Summer Foundation is the National Practice Lead, Clinical Practice Lead. This means I do a lot of work in the areas of the NDIS housing, SDA, support, health, discharge from hospital and lots of bits and bobs. My background is as a speech pathologist in the acquired brain injury field. And I’ve been at the Summer Foundation for five and a half years.
I’ve also worked as an intake advocate for DAIS who are now Regional Disability Advocacy Service in Albury–Wodonga way back in 2014. So, I’m really excited to be with you all today. So, what are we going to do today? We’re going to just talk you through a little bit of what the Summer Foundation is and talk about housing and support and changing the way that we think. SDA and SIL in terms of the NDIA policy and what Jamie Lee, Belinda and I have learned so far. And then as Melissa said, we’ll have a question and answer at the end.
So, I’ll hand it over to Belinda now to tell you about the Summer Foundation.
BELINDA AITKEN:
So, the Summer Foundation was established in 2006 by Di Winkler with the goal of solving the issue of people with disability aged under 65 being forced to live in aged care because there were no other housing options for them. So, I established the Summer Foundation, after becoming frustrated by the lack of appropriate housing support for young people with disability were being admitted to nursing homes.
At the Summer Foundation, we believe that just like everyone else, adults with disabilities should have the right to choose where they live, who they live with, and how they live. So, I’m going to talk a little bit about the Housing Hub as well.
The Housing Hub is an initiative of the Summer Foundation. It is a way for people with disability to find suitable housing and it advertises properties from a range of housing providers, and also hosts a library of useful information about housing options and planning your move. It was created by the Summer Foundation as a pilot project in 2017, with funding from the Department of Social Services, or DSS Sector Development Fund.
In its first year, the Housing Hub expanded from a few small regions to include housing located in many states across Australia. As a nationwide platform, housing providers from anywhere in Australia can list their properties and properties may include existing SDA properties, new DAI builds, non-SDA supported accommodation, private rental, properties for sale, and MTA or SDA housing. And more and more properties are listed on the Housing Hub each week.
Housing providers employing developers of specialist disability accommodation can advertise their properties for free by signing up to the housing hub, as well as connecting housing seekers with suitable housing, the Housing Hub plays an essential role in capturing the sorts of housing people are seeking.
So, that information about housing demand can be provided to government and developers, which leads to more accessible housing built. So, I’m now going to hand back to Cathy to take us around the next section.
CATHY BUCOLO:
Thanks, Belinda. So, see this slide. It’s a pretty plain slide. There are some words on it. There are no controversial photos on it. There’s no swear words on it. It’s just the slide. People read this slide, housing and the NDIS and support and the NDIS. And they start big sighing, they cross their arms, they have visions of S48s and S100s. They say weird things like, “But can it be a review of a reviewable decision?” And if they really revved up, they talk about SIL rosters of care, how many millimetres are a doorway? OOA, ILO, SDA, HBS, IL, RSC and they say weird words like robust. Who has ever said the word “robust” until now?
There’s none of all that on this slide. It’s just a slide. I read this slide, housing in the NDIS, and support and the NDIS. I hear bird singing, a little babbling broke. It’s like a musical in my head. Your problem today is that you are stuck with us and our relentless optimism about housing and support and the NDIS. But you’re lucky, because if we were face to face, we’d probably make you sit through a four-hour workshop. So, you only have to put up with us for an hour today.
So, we’re no strangers to the immense difficulty and frustration you will have all experienced in relation to housing support and the NDIS. We really get it. It’s our bread and butter. But our excitement and positivity come from this image here. It shows the change over the years in relation to housing for people with disability, as well as the key features of that through the decades.
There’s been a move from the medical institutionalised housing in the 70s to person-centred support provided as required, through the years from 2000 to 2020.
To bring us now to be centred around our obligation to uphold the rights of people with disability, particularly their tenancy rights in this context, and the expectation to the, to separate the provision of housing from the provision of support. And to provide a range of housing options.
The NDIS’s view and our view is that contemporary models of housing move towards people living in smaller settings away from larger group, group homes. In age-appropriate settings, so not in aged care. And with genuine choice over who provides their support and how the support is provided. Housing will look modern, equitable, and people are living in the community.
So, this change in housing that we’re talking about is fundamental. It seems so obvious when you talk about it. And you think, oh, yeah, I get it, no problem. People with disability, they have the right to housing that meets their needs. No one wants to live in an institution, people shouldn’t be made to live with other people they don’t want to live with, they should be able to choose and control what happens to them around them. I got it. It’s easy.
But then I had one of those life changing moments, life changing conversations with a colleague, in 2016. Right before I started at the Summer Foundation. We were talking about a new housing development that was happening which was five individual units where one person would live in each of the units, and the shared support would be in the middle.
I thought this sounded awesome. I was curious about a practical thing happening and I get their shopping done. And I asked him, “So, will they be a van or a car to take everybody shopping?” And he looked at me and with a smile. He said, “it’s not like that Cath. People are going to move into their own place, have their own support they need and choose when they need it. And they won’t be forced to meet other tenants in the other units to go shopping at a set time with strangers in a car or in a van. They’ll go shopping when they want to using transport they’ve organised and chosen and feel comfortable with, like anyone else.” I was, I’m embarrassed to say, blown away by my own thinking and attitude.
That was the turning point for me and I started to see the change that was coming. Before the NDIS, most disability housing vacancies were managed by the government. Across Australia, the government owned and funded disability housing and the support. It was mostly all shared living with large numbers of people grouped together. After the NDIS, funding for housing now sits with the person. It’s individualised.
The organisation doesn’t get block funded to run a house. The person themselves is funded in their NDIS plan for housing and the supports and they’re asked to go out into the market and find housing like everyone else, the housing market has the potential to create many options to choose from in lots of different great locations.
But as you know, we’re not quite there yet, are we? Our problem is that tension right there, isn’t it? There’s the future, we can just see, just see, but it needs to be created versus the urgent need for suitable housing right now. I believe we are all very confident, and we can do both. We can work to bring that future closer and we can work in the reality of today.
So, my experience of SDA and SIL and the evidence that’s needed is that the language that we use is important. Sometimes it’s important as it reflects that we’re upholding people’s rights and dignity. And sometimes it’s important because it can mean the difference between being funded for a support and not being funded for support.
So, in terms of people’s rights, the word “accommodation” brings to mind facilities, institutions, large, shared living, and also sounds temporary, and that it’s owned and run by someone else. It’s not yours. It’s for a holiday, we talk about student accommodation.
We’d love to see everyone move away from this old language and talk about housing for people with disability. We all holiday in accommodation, but we live in housing. The word SDA, Specialist Disability Accommodation, unfortunately, has got the word accommodation in it, and we can’t do anything about that.
So, housing leads to talking about the word tenant. Resident, client, patient is participant or perfectly fine in various contexts. But sometimes you can use the word tenant instead. And it can really change the conversation and the situation.
A tenant reads an agreement decides if they agree and signs it. A tenant has rights. A tenant might have housemates and is a housemate and there’s another great word for us. Housemate. Housemates are interviewed, and we suss them out and they’re chosen. Housemates are allowed to move in for a trial and then kicked out if it doesn’t work. Housemates have a say in how the house is set up and how everything works. The house is theirs, even if they are renting it.
And then tenants and housemates. Well. They’re not placed anywhere, are they? This phrase, “placing” someone into accommodation says it all, doesn’t it? The person has no choice, no control, others are making the decisions for them.
Instead, what do we do, we find a house we move in, we look for housing, people are housing seekers, they’re in charge, they lead the process, they make the decisions. Another great option to use the words “dwelling” or “building” instead of “place” as well.
And finally, it’s been so common to talk about people with disability with what we might call “passive language”. So, this very much sounds like things are being done to them. They’re being fed, being showered, you can hear how the person is passive, and things have been done to them versus the person eats or showers with support, or the person receives support versus the person engages support.
So, that was in terms of the person’s rights. Then some language in terms of SDA and what we’re talking about today and SIL.
So many of us have used the term fully accessible to describe a bathroom or a house. Now one of the SDA design categories is actually called fully accessible. Unfortunately, I’ve seen situations where OT reports have used the term fully accessible little “f”, little “a” with fully as an adjective, and the person needed high physical support SDA design category.
But because of the term fully accessible was used as a description in the report, the person only received fully accessible SDA funding. So, now I always recommend to just never use the term fully accessible, unless you actually mean capital F capital A and you’re talking about the SDA design category. For everything else, you can say highly accessible, very accessible, really, really accessible or just accessible
And my last Hot Tip is about how you talk about the support. So, many people’s needs are described as 24/7 support, you hear it all the time.
This is a sure way to putting a person onto a path of shared living with other people with disability. And if SDA is considered, it quickly means house three residents, group home, four residents, five residents. This isn’t always what the person wants. And even if it is, what does 24/7 support mean?
The staff at the Summer Foundation and many health practitioners I have worked with over the last five and a half years around Australia all know what’s going to come next. If they say to me, “Jane needs 24/7 support.” It goes something like this…
“Really?” I say? “Do they need someone right next to them? 24 hours a day?” I’m very annoying, hey? “Yes, they do,” they say, they need a lot of support. “Really?” I say. “They need someone right next to them who is awake all night while they sleep?”
“Oh, no. Not while they sleep.” Okay. So, they need someone right next to them 16 hours a day and a sleep. Over shift for eight hours overnight?” “Yeah, that’s better. That’s it,” they say.
So, I say, “So, for 16 hours, what’s the support worker actually doing?” “Well, Jane needs a three-hour shift in the morning for support with personal care, brekkie getting ready for the day. And then she needs support to make lunch and do some chores for two hours. And then she needs three hours for dinner, to do a hobby and contact her family and get ready for bed.”
“Ah, okay,” I say. So that’s eight hours of planned one to one support the Jane definitely needs. So, now we’ve got eight hours of person-to-person support for physical assistance set up and prompting for tasks and an eight-hour sleep over shift. What does Jane need the other eight hours of the day?
Well, she needs someone right there in case she falls or if something goes wrong, or an emergency or she drops something. Great. And does that support need to be in her dwelling? And take notice of the language here in her dwelling, her home without support? Or could the supports be close by?
Ah, yeah, she definitely could stay as long as they were really close by. Okay, so how close? Does she need them within say three to five minutes? Yes. That would be great,” they say.
One last question. This sleepover shift. Does it need to be in her dwelling, or can that be close by too? Close by is fine as long as she could contact them. Fantastic. So, she knows when she needs help, and she can call for it using some kind of technology. Yes, exactly.
All right. So, Jane needs eight hours of planned person to person support every day for physical assistance, set up, prompting. She needs an eight-hour sleepover shift. It can be close by, outside her dwelling and for the rest of the time when she is alone in her dwelling which could be up to another eight hours a day, she needs a support worker close by within three to five minutes for when she needs short bursts of support. That’s it,” they say.
So, now if think about SDA, actually, a group home and a house doesn’t really meet her needs. It would almost be over supporting her. There would be a support worker in her dwelling all the time. She doesn’t need that.
But if there were, say three villas, villas, with an office in the middle, and the technology to communicate to the three villas that could really work for her as housing, or a house and then two villas with the office in the house. And she lived in one of the villas, or an SDA apartment that’s in a residential building with another apartment that’s the support worker office. And usually by now that Summer Foundation staff member and the health practitioner, they’re pretty excited about what we’ve just done.
So, hopefully this helps you understand that you can say a person needs 24/7 support, but just be really aware of what that can lead to. Or you can describe the true support they need and create that future we just talked about earlier, where people with disability live how they want, with whom they want, and where they want.
So, I’ll hand over now to Belinda to tell us just go through what is SDA?
BELINDA AITKEN:
So, when we talk about housing, we often talk about SDA. And we’ve done that quite a bit today already. But what exactly is it?
So, Specialist Disability Accommodation or SDA refers to housing has been specially designed or modified to suit the needs of people who have an extreme functional impairment or very high support needs.
So, most of your housing special features or built designed supports people with disability to live more independently, safely, and to engage the supports they need each day. So, the NDIS funds the cost of housing for eligible NDIS participants whose extreme functional impairment or very high support needs, mean mainstream housing doesn’t meet their needs. And this is estimated to be for around 6% of all NDIS participants.
SDA funding under the NDIS will stimulate investment in the development of new high-quality dwellings for use by eligible NDIS participants. SDA funding is not support services, but it’s instead for the homes in which these services are delivered. And we used to term the “bricks and mortar”. The bricks and mortar will be involved with the NDIA. And it will be accountable to the Quality and Safeguards Commission.
It is involved as a certain design category. So, in other words, to a certain level of accessibility, and it will be that accessible. You will need SDA funding in your plan to be able to live in it. That funding will be in the capital part of your SDA’s NDIS plan. And it’s important to note that if a person has funding for SDA, they do not have funding for home modifications. And if you are funded for home modifications, you can’t be funded for SDA.
The SDA payment covers the costs to the SDA housing provider to complete the customisation and accessibility of your SDA dwelling.
What is supported independent living or SIL? And this is support for a person to live as independently as possible. This support when it’s called SIL usually means shared with other participants. It’s mostly support that’s provided in a person’s home. So, one support provider will provide it to all the people sharing the SIL supports. It’s on site, or it’s in your actual dwelling. And you need to be approved by the NDIA for it. And it usually means you have very high support needs every day.
But it doesn’t pay for utilities, groceries or rent, property damage, etc. And it will be in a person’s NDIS plan under “Core Supports”. It is usually in the plan is a stated support, which means a funding for SIL can only be used by the SIL provider.
And I’m going to hand that over to Cath to take us through our next section.
CATHY BUCOLO:
Traditionally, many of the group homes we all know about have the housing, the bricks and mortar and the supports the person, person to person support provided by the same organisation.
So, have a think about this. If a person breaks things in the house, makes too much noise, clashes with other tenants, but they have the best support workers they’ve ever had, this is a tenancy issue, not a support issue. If the housing and support is provided by the same provider, they will lose both their housing and the great support workers. And then vice versa.
If the person is abused by a support worker in terrible circumstances or doesn’t like the support worker that does the night time shift, or they’re left in bed until 11 o’clock every day, but the house is five minutes from where they work part time and their sister lives around the corner and visits every few days. This is a support issue. It’s not a housing issue. But again, if they want to change support, they’ll also lose their great housing.
In these types of situations, people with disability quickly feel trapped and stuck. Submissions into the Royal Commission into violence, abuse, neglect, and exploitation from people with disability outlined firsthand the possible consequences of not separating housing and supports.
So, this is a visual representation of how we can approach moving away from traditional thinking about people with disability as a society, to this more contemporary approach to housing and support. So, let’s think and talk about these two elements as separate and by doing this, we’re creating a future that we all want to live in.
So, Belinda, saying this, there is a question that’s on our minds. Can you live in SIL?
BELINDA AITKEN:
So, we know what this means when people say it. But if you think about the definition we just talked about, then the answer would be no, you can’t live in SIL.
But can you live in a SIL house? Again, we know what this means. It usually means a group home that is owned by a disability organisation, and they provide the SIL as well. And it means it is housing or dwelling that is not enrolled as SDA housing with the NDIA. And that’s really important information. Because it can also mean that the house is owned by the SIL provider and this leads to people’s choices been really impacted because if you want to live in that house, you have to have that support provider.
And we do have a position paper on this on our website, if you’d like to read more about that.
So, instead of living in a SIL house, we would prefer to say you live in or searching for non-SDA disability housing with SIL. So, everyone knows that the person doesn’t need SDA funding, but they do need SIL funding.
And there are risks involved with that type of housing and support model, as we just talked about. So, one last question. Do you have to live in SDA or non-SDA disability housing to be approved for SIL?
And the answer to that is no. Because two or more NDIS participants couldn’t live in a private rental, or social housing, or a caravan or an Airbnb or a service department in a hotel. And they would both still have SIL funding.
So, I’m going to hand back over to Cath now to take us through our next section.
CATHY BUCOLO:
Thank you. So, I’m going to take you through some different options for housing a person can live in, and some support models using this contemporary language and concepts.
So, you’re, many of you are going to be aware of these. And I’m certainly not presenting them as new ideas. But it’s just to really reinforce let’s not default to any housing and support approach. Let’s instead first think about the person, what are their housing needs and preferences? What are their support needs and preferences? And how could those two things come together to meet the person’s needs and desires? And then what funding would they need?
So, the first example is for want of a better term, where the person is living in mainstream housing, we’ll call it and has core supports. So, the person is living alone, with all people without disability. The housing is mainstream and could be your own home, private rental, Public Housing, Community Housing. The supports are in the plan as core supports assistance with daily living or could be ILO. The person chooses any provider they want for their assistance with daily living in their community access. And the housing provider, as such, is separate to the support provider.
So, the next one is same in terms of the housing, so we’re still talking about mainstream housing. Now the person lives with other people with disability. The housing is the same as we said, private rental, own home Public Housing, Community Housing or NRAS. The support is in the plan as core supports SIL assistance with daily living. So, all the tenants have one support provider for the SIL. They can have each have their own provider for community access, or sometimes they just use all the one provider. And again, the housing provider is separate from the support provider.
The next example is non-SDA disability, housing SIL. So, now the person is living with other people with disability, the housing is non-SDA disability housing, the supports are in the plan as, under core supports as SIL. All the tenants will usually have one SIL provider, they may have their own community access provider, or they may just all use the same provider. And the housing provider now may be separate, or it could be the same as the support provider organisation.
And our next example, now we’ve moved into the housing being SDA. So, the person is living with other people with disability, the housing is SDA, the supports are in the plan, as core supports for SIL. All the tenants have one support provider for SIL, they could each have their own for community access or not, the housing provider may be separate or the same as the support provider.
And I’d note that this is the common way. But we’d really encourage you to all think about and there are other ways that you could think to do this housing and support model that would still uphold people’s rights and their choice and control over their lives.
Could some of the support be SIL and some being their core supports? If three people live together could two people share support and one doesn’t, because they really want to be housemates, but they want different support providers.
We really know this is a complex, a complex thing to implement. But I think this is our time to really challenge ourselves, could we really uphold people’s rights and their choice and do this kind of housing.
And the last one, which personally is, for me, the most exciting is when there is there’s SDA, there’s SIL and there’s core supports. So, we have got the combo. So, this is pretty new still. The person is living alone, or with partner, family, friends, a person without disability, the housing is SDA. And for this option, if it’s easier to picture, you can picture 10 apartments peppered throughout a residential building or six apartments peppered throughout a building. It could also work for three villas that are near each other. It could also work for a house and then two villas near each other as an example.
So, you’re imagining that the tenants live alone, or with others without disability each in their dwelling. And those dwellings are near each other. And there’s some shared support very close by. So, the supports are in the plan, some supports are in the plan as SIL. And that’s for that shared component. But some supports are also in the plan, sorry, as core supports that that person can choose whatever provider they want. They, that all the tenants involved could choose the onsite provider, the one that they’re sharing. And they can do whatever they like for community access, choose any provider. And here the SDA provider, the housing provider, ideally, again, is separate to the support providers.
So, if that’s a bit confusing, or we’ve got Q&A time, go for it. Write your questions there.
So, I’ve got one last slide. Just to take you through that the NDI Act gives effect to Article 19 of the United Nations Convention on the Rights of Persons with Disabilities. So, this talks about, “That persons with disabilities have the opportunity to choose that place of residence and where and with whom they live on equal basis with others and are not obliged to live in a particular living arrangement. Also, persons with disabilities have access to a range of in home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community and to prevent isolation or segregation from the community.”
So, the NDIA is addressing this by establishing a Home and Living Policy that you may have heard of, which is described as person-centred. And with the aim of giving participants more choice and control over where they live, who they live with, and the supports they use.
The policy covers housing, housing related supports assistive tech, and home modes. The NDIA recently consulted with people with disability in the sector to support the design and the implementation of this policy. So, once this is finalised, it will give us all a really great picture of the NDIS role in funding home and living supports for people.
I’ll now hand it back to Belinda and JL, who will finish up our portion of today and let you know about their experience of SDA and SIL. And we’ll hear from Belinda first.
BELINDA AITKEN:
Thanks, Cathy. So, I mentioned earlier that my journey hasn’t always been easy. And that continued after I moved into my new apartment. In fact, that started a couple months before I moved in. So, I had never support workers before. It was always my mother who helped me my day-to-day activities. So having any outside help was very new to me.
In the SDA that I moved into use the SIL model of support. And then maybe one support provider provided both my daily living supports and the shared support component. But I didn’t really think too much about this at first, as I knew a little about having support workers.
But that changed not long after I moved in. After I had a meeting with the new support provider, they seem very controlling, to the point that they even told me that I would have no choice and control over who worked with me, and this raised many red flags. But my problem was I’d already agreed to use this company as part of the conditions of moving into my apartment.
And I did search advocates around this time, however, because I only had a physical disability, I thought no advocate would take me on and I had a voice, only, I wasn’t in the practice of using it to stick up for myself. Besides, I should be grateful that I had place to live and was specially designed around me, right? And I was grateful for that. But no one should ever have to be grateful for a support model that doesn’t meet their needs.
And what I found when I moved into my new apartment was a group home model transplanted into the new SDA apartment housing. And house support times were regimented. And often, were, we weren’t allowed to change them because it would interfere with the rostering with other tenants and rostering was a major issue that continued throughout.
The provider would constantly try to put support workers on my shifts that weren’t trained in my routines, or I wasn’t comfortable with, and no one should ever have to put up with that. The way support is delivered in SDA should be up to the tenant to provide maximum choice and control.
The daily living component of a person’s care should be up to the individual and not the choice of the SDA provider. It took me over a year of complaining to both the support provider and the NDIS Safeguards Commission to get control of my one-to-one supports.
But I did get there and now I run my own team of support workers. And we also have a new support provider running the shared support component here. And they seem to be more person-centred, which I think is really good.
So, most SDA partners have a support model that allows a tenant to bring their own supports and use whatever provider they want for their one-to-one support. However, there are still places where a group home model is used.
So, if you do come across people who aren’t happy with the support model that is in their SDA property, know that you can help them to change it and it’s very important that people know their rights and when and how they get their support is a fundamental part of those rights.
So, I’m going to now hand over to Jamie-Lee to take us through our experiences.
JAMIE-LEE DWYER:
Thanks. (Unclear 00:45:58) who told me that a new building in the city, with SDA included and I didn’t really know a whole lot about what I was getting into, but I really wanted to move out of where I was in the group home. So, when they (unclear 00:47:03) because a lot more people especially at Summer knowing how it all works. So, (unclear 00:47:37) in here, seeing my (unclear 00:47:51) my parents. I am on my own where I can (unclear 00:48:01) in here now and I am on own dealing with. And here, we (unclear 00:48:15).
So, I didn’t know whether I could be financially responsible for moving and on (unclear 00:48:36) which worked out okay, I can because my bank is only 25 (unclear 00:48:56). I can afford everything else. So, I live in the city, and I live in a building with able bodied people and disabled people. The new model is (unclear 00:49:41) and not degradation where I am all about segregating disabled people from society.
So, my personal support team, the ones that work here on site are a lot more flexible with my needs which means, for example, I write with a few of them (unclear 00:51:00) so I dictate to them, and they help me write because I was having a lot of trouble writing when I was (unclear 00:51:18) and this wasn’t something that I loved to do. I wasn’t really able to write what I want, what I wanted and so now I can and it’s really great.
I don’t want to live to anyone’s rules, which means I do what I want, when I want like other, other young people. I love living here in my very own bachelorette pad. It’s really cool, and I seriously encourage anyone thinking they can’t move out because their needs are too high to move as well, I get all the care I need.
And now I will handover to Cathy.
CATHY BUCOLO:
Thank you. Thanks Belinda and JL. So, fantastic to hear from you both and finish our presentation today on both of your experiences. And now we’re done. You can see our contact details there and I’ll hand back to Melissa.
MELISSA HALE:
Wow, Cathy, I have to tell you, you made the DARU team crack up laughing with your plain slide about housing in the NDIS and supporting the NDIS and people’s reaction to it we started to crack up because that is so sadly real. And it’s moments like this I wish we could all be face to face so I could hear the room chuckling along with us.
So, thank you very much to all of you, and particularly Belinda and Jamie-Lee for sharing your personal story. It’s really quite mind blowing to see the illusion of choice and control rather than actual choice and control particularly by strong women like yourselves had to go through makes you wonder about people who aren’t as strong and what they are going through as well.
So, before we go to questions just first thing I’d like to highlight is that the slides and recording for this session will be available on the DARU website as usual.
So, we’ll go to questions and answers now. We’ll pop them up on the screen. So,
QUESTION:
Can we have the link to the position paper about the SIL owned housing Belinda had just mentioned. I would be interested to endorse this and add to our own position paper in the future through our systemic work. So, where would we be able to find that position paper?
CATHY BUCOLO:
Yeah, thank you so much. That’s fantastic. Yeah, really easy if you go to the Summer Foundation website, and then look for under resources related to policy and look for the policy there. But also, Melissa, if you’d like to, we can send you that link, and you can send it to the participants or whatever works best.
MELISSA HALE:
Yes, we will make a resource page with the recording of this, we can put that on the resource page as well. So…,
QUESTION:
is the home modifications for housing through the assistive, assistive technology process. So, I assume that means about NDIS funding. So, if someone wanted to make home modifications, can they do through that assisted technology?
CATHY BUCOLO:
Yeah, it’s a bit of a funny thing – the answer is yes. So, assistive technology, and sorry if you already know this, but if you think of it as the broad umbrella term, and then under that are a whole different level. So, say the highest biggest level is for home mods. So, you’re right, under assistive technology, you’d apply for home modifications, and then the levels you imagine can go right down to if you needed a non-slip mat for your bench. That’s also an assistive technology process. But I think what the point that as well that Belinda was making was that if you’ve got home mods funding, you can’t get SDA funding as well.
MELISSA HALE:
Okay. Next question.
QUESTION:
If more than one person with a disability shares a house, would they need to have SIL funding in the NDIS plans? Or could they simply use their core funding in their NDIS plans?
CATHY BUCOLO:
Hmm, great question. Belinda, do you have anything to say about that?
BELINDA AITKEN:
My experience… Well, I do live alone so I don’t share with anyone else. And I’ve never shared with anyone else. So, I don’t necessarily know what is in funding for in their plans for supports when you do share house but usually, if you are in a share house you do normally need SIL funding as well.
Is that correct, Cathy? I think it’s something like that. I know I have SIL funding in my plan. I live alone. But I also have core funding for my one-to-one supports. So, my SIL funding is for the shared support component because I have got five other tenants, so there are five other tenants in their own apartments in this building. We all shared support and that comes under SIL funding. So, I think any support that shared between people I think falls under SIL funding,
is that correct? Cath? I think it works that way.
CATHY BUCOLO:
Yes, you’re spot on. And Jamie-Lee, I wasn’t sure, did you want to add something?
JAMIE-LEE DWYER:
Yes, I was contemplating moving out with friends and we were talking about SIL and one of my friends was telling us that she didn’t have enough. So, she couldn’t use her core but (unclear 00:58:58) money for her (unclear 00:59:08). So, you can it is meant for your one on one.
CATHY BUCOLO:
Thank you both. You have both answered it. Usually yes. But if that’s not what you want, we’d probably all three of us would say Give it a good go.
MELISSA HALE:
Yes, it seems that could be creative budgeting, that’s what it looks like to me. Next question. All households do that.
QUESTION:
Do you have any ideas on how people can learn about their rightsif they’re in an SDA that doesn’t allow advocates access, which happens quite often sadly?
CATHY BUCOLO:
Wow. Can I throw to one of you to answer that?
JAMIE-LEE DWYER:
(Unclear 01:00:30). Belinda?
BELINDA AITKEN:
I just want to say it surprised me that some SDAs don’t allow advocates access. I think that this is just wrong. But I mean, you can learn about… I mean, we have resources at the Housing Hub and Summer Foundation that does list what your rights are. And they do have different workshops and webinars listed on our site as well, that will take you through what your rights are in SDA, in SIL and in other areas as well. I think we do have some great resources that can help you with that.
Do you have any other suggestions? Maybe Cath where people can find out more?
CATHY BUCOLO:
Yes, thanks. That’s great. So, we’re really talking about, about the Housing Hub that she told you about. So, if you go to that that Resources page, also the Summer Foundation website resources page. I’d also say if a house or dwelling is SDA, that means it’s been enrolled with the NDIS and is accountable to the Quality and Safeguards Commission.
So, you know, you’d be calling, and this is assuming that the person can do this, and this might be sort of the complexity of this question, I imagine, as well. But Quality and Safeguards Commission is another option.
And if you happen to live in Victoria, I’ll just add, the consumer rights website has really good tenancy information about SDA. Look, I haven’t seen that for the other states, so I am sorry about that. But yes, again, we can give you that link if you happen to live in Victoria. That’s really great.
MELISSA HALE:
Great, I think we’ll go to the last question because we have got lots of questions coming through, so one more.
CATHY BUCOLO:
We needed the four-hour workshop!
MELISSA HALE:
Yes.
QUESTION:
Typically, how long does it take to receive approval for SDA SIL funding from the NDIS? I realise there will be (unclear 01:02:47) but an approx. will be helpful.
CATHY BUCOLO:
Thank you for asking me this question. I was hoping somebody would.
So, the really useful thing to know is, as you may or may not know, the NDIS has operational guidelines. There’s an SDA operational guideline. So, if you Google that you can find it. And about halfway down, there’s a tiny little sentence that says, “Once the SDA panel has your evidence, they will try to make the SDA decision within 10 days.”
So, you want to take that sentence and run with it. And use that in your very strong advocacy.
And anecdotal anecdotally, and probably in our work with the NDIA we hear that the expectation for SIL is you’re often here four to six weeks is what they would like. I think if we asked all our participants here today, that’s certainly not what we see happening on the ground, it takes a lot longer.
And with SDA, our other hot tip would be, particularly if the person’s in hospital or in aged care, that when you’re sending in your home and living form with your participant housing statement, your functional capacity assessment from an OT and a behaviour support plan if you’re going for robust housing, that you also in the subject of that email, right urgent person is in hospital or urgent person is in aged care to get people’s attention.
MELISSA HALE:
So, I can just see advocates (unclear 01:04:42) and I am going to find that sentence right now. I am going to run with it. But everybody, we have come to a close of this last session of this series,
so I would like, really, thank you Jamie-Lee, Belinda and Cathy from the Summer Foundation for your time during this presentation to us today on a very important topic. Thank you very much.
CATHY BUCOLO:
Thank you.
BELINDA AITKEN:
Thank you.
MELISSA HALE:
Thank you also to the Auslan interpreters and captioners for their hard work today. Thank you to Show Division for bringing this production to you today. Have a wonderful week everyone. We’ll see you next time.
Download presentation slideshowNDIS SDA Operational Guidelines (off-site)NDIS SIL Operational Guidelines (off-site)Consultation on Home and Living – Submission by the Summer Foundation (off-site)Closed setting SIL homes – Policy Position Statement by Summer Foundation (off-site)Housing Hub resources (off-site)Consumer Affairs Victoria, SDA information (off-site)
- Author:
- DARU
- Date published:
- Thu 28th Oct, 2021