Designing Safe, Purpose-Built Homes: A Conversation with Niti Prakash

Niti Prakash is a Disability Sector Consultant & Lawyer as well as disability accommodation/independent living options specialist at Disability Housing Solutions. Niti recently took on the role of Head of Engagement and Growth at Disability Housing Solutions. Niti’s most important role is a single parent to her 11-year-old daughter with multiple disabilities and challenges. 

Episode Description: 

In this insightful episode of ‘Forever Home for Our Kids with Disabilities’, Valerie sits down with Niti Prakash, an Australian advocate, parent, and expert in purpose-built housing for people with disabilities. With both professional insight and lived experience, Niti shares how families in Australia are navigating the complexities of creating forever homes through innovative housing models, like Specialist Disability Accommodation (SDA).  

Whether you're just beginning to explore housing options or already knee-deep in planning, Niti offers a look at how it works in Australia.

In this episode, you’ll learn:  

- How Australia’s NDIS and SDA systems support individuals with disabilities in purpose-built homes 

- The concept of “robust housing” and how it's designed to protect both residents and carers  

- What it means to be a “self-provider” and the responsibilities involved  

- Real-life examples of care burnout, system challenges, and how to proactively advocate for your child 

- The importance of community, forgiveness, and staying strong on the caregiving journey  

Key Takeaways:  

- Purpose-built housing is not just about bricks and mortar — it’s about creating safety, independence, and a better quality of life.  

- Parents must juggle planning for the future while managing the intense demands of the present.  

- Bad things can happen, but with good design, supportive care teams, and strong advocacy, a thriving future is possible.  

- You are not alone — there is a global community of parents walking this path with you.  

Words of Encouragement from Niti:  

“Forgive yourself. You didn’t do anything wrong. You’re supporting a child with complex needs, and that’s not easy. There’s no manual — even for neurotypical kids. But you can do it. Hold on. There’s a whole community out there walking this journey with you.”

Don’t forget to:  

- Share this episode with another parent who might need it  

- Subscribe so you never miss an inspiring conversation  

- Keep building your child’s future with courage and intention  

Keep building your child’s future

Live with Intention – Embrace the Journey

Connect with Niti Prakash 

https://www.linkedin.com/in/niti-prakash-a38aa6108/

https://disabilityhousingsolutions.com.au/

Connect with me:

hello@hello.coachingwithvalerieanne.com 

Music Acknowledgement: Audio Coffee - Denys Kyshchuk

Editor: Scott Arbeau

Link for book: The S.H.I.N.E. Principle: The special needs mom's path to strength, hope and happiness by Valerie Arbeau

https://www.amazon.ca/dp/B0CW18ZXGX (Canada)

https://a.co/d/03hFdZI4 (United States)

Learn more about your host at:
https://coachingwithvalerieanne.com/

Transcript

We had someone in a previous company that had, and I forget the name of the disorder, but it was a phobia to rain. And so, the house was set up so that when there was a sound of rain or a trigger, he could press a button for blackout curtains and, and sound insulation to come in so he wouldn't be triggered. So that's the type of improved livability. It's also more accessible homes as well.

Hello and welcome to ‘Forever Home for our Kids with Disabilities.’ I’m Valerie mom to two with disabilities, one visible and one invisible. I’m a life coach and an author. This space has been created to help you navigate the journey of creating a secure, sustainable forever home for your child. We’ll chat with parents on this path, realtors, financial planners and other experts who can make the process easier.

Why am I so passionate about this? Because seeing my eldest thrive living independent of us was a gift I didn't always know I could give.

I want you to have the opportunity to explore giving that gift to your child.

Hello and welcome to today's episode of Forever Home for our kids with disabilities. I'm your host, Valerie Mum to two with disabilities, one visible, one invisible. Today, I want to introduce you to our guest. It is Niti Prakash. She is a disability sector consultant and a lawyer, as well as a disability accommodation/independent living options specialist at Disability Housing Solutions. Niti recently took on the role of head of engagement and growth at Disability Housing Solutions. So congratulations Niti on that. 

Thank you. 

You're welcome. I'm just going to share that Niti does not mind sharing her age. She is 44 and I'm just going to say she's rocking it. She looks amazing! Niti's most important role though, is a single parent to her 11-year-old daughter with multiple disabilities and challenges. Welcome Niti.

Thank you so much. I'm so excited to be here.

And I'm excited to have you here. So Niti, we're starting with a little bit about your special needs mom journey. Can you share with us?

Well, I don't know. Most people would have heard of the welcome to Holland story. I don't know if all the parents on here have, but that is my journey.

I actually have a little miracle baby. I, my daughter Lara, she actually is through IVF and I had a 1% chance of getting pregnant. And I was successful in the first round of IVF. So, I do call her my little miracle child.

But I will be the first to admit that when she was born, the first thing that I noticed is she has facial nerve palsy. And I'll be honest as a mother, I didn't want to borrow it. I was like, well, where's my perfect child? And that was struggle street, that acceptance for me and the PTSD and the grief was huge for me. And that's why I always refer to the welcome to Holland story, because that's how I felt.

So, as a result, you know, we had multiple challenges. Lara has a number of disabilities and core morbidities, including one that's really rare. It's called dysgenesis of the corpus callosum. So that's where part of her corpus callosum in her brain is missing. Now, I don't like drawing parallels, but basically it's a spectrum disorder. So just like, I guess kids with ASD, there's a spectrum. It's the same with this. So, at the time I didn't see the blessing, but Lara actually is blessed because her development, even though we have delays and we faced a lot of challenges, you know, she's on the better end of the spectrum, even though I hate that word too. But how else do you say it? You know, kids with this disorder also can be born with, you know, physical mobility challenges, wheelchair bound, you know, cognition issues. And that's usually where another part of the brain is affected. So that's just her primary disability. She also has bilateral hearing loss, facial nerve palsy, sensory processing disorder, anxiety.

And she was actually born with a left ear, kind of malformed ear. The term is a pinna. So we did do an ear reconstruction early on because her school journey has been tough. Unfortunately, that failed. So, you know, there's a few complications with that. So it's been an epic journey. Her dad left the picture when she was three. And that was a massive challenge because she reacted pretty badly and she started to self-harm. So, you know, there was a lot of urgent, I guess, seeing a physio, not physio, my apologies, a pediatrician and all of that. And that's where they said, look, we think that what's playing up here in terms of self-harm and her big behaviors are more linked to a neurological condition rather than an additional diagnosis of ASD. But really, the, the behaviors that she exhibits really mimics and copies kids with ASD. So it's kind of like, you know, if, if there are strategies that are suggested for an ASD child, then of course, I try and implement that as well. I could talk for hours on this, but I'm trying to just give you a brief summary. It's been a tough journey, especially on my own and with very little support. But I have great framily. I don't know if anyone's heard that word. It's friends as family.

You know, I can count them on my hand, but I'm so lucky and blessed that they are around because, you know, they have gotten me through some really, really tough times when you feel like you can not get through it all.

Wow! I'm just taking that in for a minute, Niti, because that's a lot. That's a lot for a single parent to be dealing with. Wow! And, I get the, the journey is tough parenting period, whether you're parenting a child with a disability or a child without a disability, but then to add the, the addition of being a single parent and then trying to earn a living as well, so you can provide for your child is huge. And I'm so sorry to hear that your child went on the self-harm journey. I, and especially at such a young age. 

Yes. She was three. She was three. And I didn't get it. I mean, I had to use the strategies, I'm sure lots of parents will get this where you are holding your child in a, like a bear hug, but your legs are crossed against their legs because otherwise they'll use their legs to cause harm. I will never, honestly, I don't think I'll ever get over that. The behaviors are different at 11 as compared to three, but it's just all about that self-regulation and her angst was so high. I've really never experienced anything like that. And I still remember those cries and screams and, you know, I, I'm sure every single parent, you know, with these issues have felt it and it will never leave their brain.

I hear you. I hear you. Yeah. I had a situation with one of mine where they were banging their head against the wall. And I just thought to myself, I can't, I didn't know what to do because it was just sort of an out of the blue thing. So all I did was sit with my child, put my hand behind their head, so it was my hand that was hitting the wall. And just prayed and just waited it out. It took some time, but I can appreciate the fear. I can appreciate your fear with your child. I was fearful with my child. I didn't know where it was going to go. And just to be able to sit with it and work with it and go with it was so difficult. It was so difficult. And you're right, it just never leaves you. Like I'm, I'm reliving as I'm talking about it now. And it's like, I, it was just yesterday and I was just experiencing…

It's a trauma isn't it? And it's just, you know, the sound is ingrained in your head as well. So it's something that still makes me emotional to this day when I do think about it. But you know, it's, it is the journey for many.

Yes, it is. And thank you for sharing some of the diagnoses that your daughter has because it's, that's a lot too. Most of us deal with one. I know when my children were born, my oldest has cerebral palsy and that's all I focused on. It wasn't until she was maybe five or six that a speech language pathologist suggested that maybe she was on the spectrum. 

Yeah. 

Oh, okay. And it made so much more sense how my child had been the delay in her smiling and she didn't want to look at us and all those small things that happened during the beginning of their journey as they're growing and developing, but yeah, we were just so focused in on the cerebral palsy that we didn't even consider there could be a second diagnosis and here you are with several.

Yes. Look, it was hard. And that's why I'm openly admitting that at the beginning I didn't want to borrow it. I did not accept it. Even at that time, my ex-husband was better at it than me. But I talk about this openly because it is so important for mothers to not feel guilty about that because I love my child. I am her biggest advocate and I'm her mother and I'm here for the long run, but I did not start off well. And that's why I'm very open about discussing that because that was just like I said, welcome to Holland story. So…

Yeah. And I love that you brought up friends. No, what, how do you say that?

Framily. Framily. 

Yeah. Yes. They're there. And it look, it's a journey when you don't have as much strong family support, right? And so, I was very lucky, particularly in the older years, because things just got more challenging with various complexities. And, you know, I made friends. You know, I'm also a member of church and my church family are a big support. My daughter's extracurricular family, their moms are big support. And so, you know, whilst I can count them on my hand, don't always say to my daughter, you only need one because she does have social challenges at the moment. That's our biggest challenge. And so I said, you just need one. You really just need one person. And they can be a friend. They can be family if you're lucky enough and blessed enough, they could be really anyone. Some people have helped me in awful times and they didn't know me from a bar of soap. So, I've been lucky in that sense. Yeah. Yeah.

Wow. All right. Just shifting gears a little bit, Niti. You graduated from law school. So, tell us about your career path and how you got into doing what you're doing now.

Yeah. Well, it's kind of interesting. So I guess I always say better the devil, you know. So when I was younger, I come from an Indian background, I guess any Indians would recognize that there's a lot of push for being an engineer and a doctor and the usual career paths. But let me tell you, I was terrible, terrible at maths, terrible. And so I basically said to my dad, look, I just can't continue that in this physics and, you know, the bio, biology chemistry path. And I swapped into, I will never forget this legal studies. And I got the subject award in high school. And that was when I went, oh, I could be good at this. So anyways, I went on and became a lawyer, but unfortunately, it doesn't suit my personality at all. Now, my most of my career has been as a lawyer. And that's why I say better the devil, you know, number of reasons, income. I'm a single parent since three years. So since my daughter was three, income is higher, you know, when you work in law. But I also have very strong ethics and morals. And I ended up in a situation unlucky or lucky, I guess, blessed because now I'm in disability. But where one too many things went wrong, straw that broke the camel's back and I went, that's it. I really need to take the jump away from law. And my passion has always been advocating in the disability sector. So how I did this is I was lucky I applied from disability accommodation jobs and because I'm a property lawyer. So, that links directly into the construction side and the challenges that are faced from the building side of SDA. And I was really lucky. So I started off at an SDA company and we can talk about that shortly and what that means.

And, and now have found myself at Disability Housing Solutions, which honestly, with some experiences I've had, because anywhere where there's funding involved, America doesn't have as much, I did do some research into it, but Australia does have what's called the National Disability Insurance Scheme. Anywhere where there's funding involved, everyone knows there's fraud, there's toxicity, there's unethical practices. And with a few false starts, I've ended up in a company where honestly, I can say hand over heart, I'm here because they tell the truth. Whether it's to the owners building SDA's for investments, whether it's to the families or the individuals who are going to live in the accommodation. And that sits well with my morals and that's why I'm here. So, I've been very, very lucky. I love it. I will never go back to law.

And one of the other things I'm looking at and have been lucky enough is some independent disability advocacy as well. So assisting people who are fighting NDIS to hopefully get that disability accommodation funding.

Wow. So that's quite the journey, but I love how being a lawyer has dovetailed into what you're doing right now. So I just feel like you were on the path to come to where you are right now. 

Exactly. Exactly. And that's why I would say, look, you can say, well, although at the time I didn't believe it, but clearly I'm proof that you can sidestep your career path and use the skills that you used in a particular job, whether it's lawyer or otherwise, and apply those skills elsewhere. There's negatives and positives. I've had to learn to be honestly softer as a person too, because disability sector needs that. And so I've had to learn to work with that and improve upon that side of things as well, because law is definitely, no one would describe that as a softer kind of industry.

Tell me about SDA, you use the acronym SDA. What does that stand for?

Yeah. So in Australia, it's called Specialist Disability Accommodation. So we're lucky in Australia to have a government scheme that's called National Disability Insurance Scheme. And one of the categories of funding that, we call them participants, but that's really just the people who are qualified for the funding. So in Australia, if you say participant, that means that there's somebody who has NDIS funding. That's really the summary of it. So specialist disability accommodation is a purpose designed accommodation for those with complex disabilities. Now, that is both the physical disabilities as well as your psychosocial. And there are different categories of accommodation depending on the disability. Now, SDA, or as I call it, SDA is not something that's just handed out because obviously it involves the government funding accommodation.

So it is hard to get. And that's where I said, you know, dovetailing into the advocacy side is something I also am working on.

But if you meet the criteria and essentially willing to advocate, which is really important, I've had to do it for my own daughter's NDIS funding, generally, you will succeed as long as you have grounds. So about six, they say about six to 10 percent of NDIS participants in Australia will qualify for that. And so what I, and as an example, and unfortunately, you have to use labels and you have to name the primary disability and all of that sort of stuff. But when you think of one category, when you say complex physical disability, generally, we're talking about people who are wheelchair supported 24/7, you know, need assist for transfers, that sort of stuff. And when we're talking about complex psychosocial, we're talking about complex behaviors of concern. So often the label that's attributed to kids, who, kids and adults who have, you know, A.S.D. three, you know, mixed in with intellectual disabilities and a whole range of things. So that's what it is in Australia. And it's funded by the government. If you're successful, then this is where the owners come into it. There are owners just like everyone else who needs investment and to make extra money. They invest in building this accommodation. Which to me is amazing because the accommodation is not cheap.

There are risks associated with it because it's not like just renting to somebody on the street, like Joe on the street. You know, you're targeting a niche pool of people and then fits into that picture, which are SDA providers, which is where I work. So Disability Housing Solutions, you must be an SDA provider to manage an SDA home. So owners appoint us to manage their home and to find the participants or the people who will fill those homes. So I guess it's a complex area. And even in Australia, it's not known. And we often are involved in education pieces on that. I'm a passionate person in terms of educating the industry, educating families.

So that's really it in a nutshell. So we are lucky because I did a quick Google, you know, for America. And I believe there's no such scheme that exists there. And I'm not sure about Canada either.

Nothing in Canada like, anything like that. I'm, I'm here listening in. My brain is going crazy, thinking how can we adopt this?

Yes. Well, unfortunately, it is government funded. So the opposing argument is NDIS costs of fortune. The government and therefore also our tax rates are higher. I'm sure it's much higher than America. So I guess, whenever you provide social services of that type, right, tax goes up and all of that. And look, I'm an advocate for it, obviously.

But, Australia also has health insurance schemes and things like that. So we are lucky to live in a country like this. They even have university loan schemes to help people going to university. So we're lucky in that scheme of things. And I'm happy to take the tax liability for that because I'm earning an income. So, you know. It makes for a better country. That's my view, at least I'm sure there's thousands of differing opinions. And yes, I'm all for the US and Canada bringing it in. It's a good thing.

So I'm just going to go back a little bit now. So the criteria for you've mentioned for getting on to this insurance disability. So NDIS Funding is called the National Disability Insurance Scheme.

Yeah. So you'd mentioned sort of the criteria to get on to that. So, once a person has got that, what's the criteria for them to get housing then?

So you actually get the criteria of housing. So I can get into a bit of the nitty gritty and I'll mention it briefly. But there's four different types of housing options. And when we talk later about what to look out for, that's pretty much it. So we've got what's called high physical support. That's the top criteria for complex physical disability. So, those houses have ceiling hoist capability. So the ceilings are reinforced so that ceiling hoist can be put in for your transfers rather than just going on manual hoists. They also have wider doorways because you need to have, you know, appropriate turning circles and circulation circles, particularly because a lot of the times the funding granted is shared, which again is massively debated in Australia. But at the moment, my view is something is better than nothing.

So, you know, when you think of sharing with three other people or two other people with, in wheelchairs, you need to make sure there's enough space for everyone to move about. Right. So, you know, the doorways are wider. They're one point two meters. So there's specific guidelines that must be met to build these houses. So that's what's called high physical support. Just under that is called fully accessible. It's pretty much similar to high physical support. The exception is that a lot of the people with this funding may actually have some independent mobility. Right. So they don't get the top level. They get this one. Then there's something called robust. Robust is your complex behavior. So your ASD three. And that is where the houses are reinforced with sound insulation, double the wall linings, you know, in terms of behaviors of property damage, behaviors of concern and other sort of things. So basically more hardy fixtures and fittings. There's been a lot of debate like the houses these days, if they're constructed properly and we work with those types of houses, we will not go with an owner that has a what do you call a sterile looking jail looking house, because that's what it's about. It's the journey towards independent living. And I'm a big and my passion, by the way, is robust.

And I'm a big believer that we have too many people in mental health wards, even prisons, for that matter, who possibly could have a more stable life if they had the right accommodation and the right support. So it's a massive passion piece of mine as well. And the third category is called improved livability. Now, that's the lowest category. And that's for more generally, they may have physical disabilities, but we're talking about sensory issues, light issues.

We had someone in a previous company that had and I forget the name of the disorder, but it was a phobia to rain. And so the house was set up so that when there was a sound of rain or a trigger, he could press a button for blackout curtains and, and sound insulation to come in so he wouldn't be triggered. So that's the type of improved livability. It's also more accessible homes as well. So

we've got four categories.

Wow. OK. 

Yeah. 

So that sounds amazing. And I'm just as you're talking, I'm just thinking, you're right, the expense to build these homes. So who foots the bill for making all the accommodations?

The investors. So if let's say if I had a decent amount of money, which, which I don't. But let's say you wanted to invest instead of investing in a residential apartment or a house to rent, you invest in building specialist disability accommodation. Your cost is more, but the return, and I'm going to say this carefully, is very high compared to your standard residential if you get it right. So unfortunately, as a result of all this, there's been lots of SDA accommodation built in areas that have got too many. So they end up being vacant. There's been lots built with the wrong, basically just the wrong layout, the wrong setting in the early days of like, let's get it up quick. So with funding and all of this comes out rush work and the and the dodgy jobs and all of that sort of stuff. So that's all of the stuff that interplay. So investors basically invest in building SDA and their return is basically the funding that the participant gets. So they are able to claim via us like SDA provider, the annual SDA funding, it's called, that the government provides plus a rent contribution as well from the participant, which is basically a percentage of their pension.

Because we, I don't know what happens in the US and Canada, forgive me, but if you get various types of pensions, one of them is called a disability support pension.

Mm hmm. Yes, I can't speak for the States, but I know here where I live my daughter is on, it's called AISH. So it's a government disability pension, I guess. 

Wonderful. 

But we call it, we would call it a benefit.

So yes, yes, that's right. So it's similar there. I mean, it's not a huge amount. 

No. 

But, you know, again, like I said, there are countries that don't have any of these benefits. When people complain, I'm like, I still think it's better than nothing. You know, it's just got it's that ebbs and flows like when I raised my child for, let's say four years without NDIS funding.

And I'm I was a high income owner at that time, I was a lawyer. And the, the expenses were through the roof for speech pathology, occupational therapy, blah, blah, blah. And it breaks my heart, particularly for speech, because she's got bilateral. If I hadn't funded for that and didn't have the money, her speech probably wouldn't have developed as quickly. And she doesn't need it since she started school. She doesn't need a speechie anymore. So I am a huge, huge advocate for early intervention supports. It is literally what got my daughter going. The same as getting her to walk because she never crawled.

Wow. OK. All right. So I'm just picturing these houses in my head, you have in Australia. So an investor would come to your company and your Disability Housing Solutions and so say, “Hey, I'm ready to invest. How can I help? Where should… So you're the ones that will advise them where to build and how to build, what to build?

No, so we don't get involved in the building site. There are a huge range of builders that actually specialize in SDA accommodation.

So we've got. So if let's say an investor and this is common conversation we have someone says, look, I want to build SDA accommodation, we can set up an initial chat where we talk about, OK, where do you want to build?  Do you understand how it works? Do you understand the risks? And then we can connect them if they wish to various builders who actually build it. But see, the honest truth is generally when people want to build SDA they're going through a finance broker, right? And the brokers obviously know who the builders are and stuff. And they'll refer them to the builder or someone who packages up the, I don't know what the word is in American or Canada, but packages up the deal, as you call it, the land, the building and then right till the end of certification.

But we can always recommend builders, but we are not involved as a party to any of the building. We take over once it's built and they appoint us as the SDA provider because our job is to because there's a lot of compliance, things that need to be met. Obviously, it's government funding. So the government specifies that you must be an SDA provider to manage an SDA home unless you're going to self-manage. And that's a total different side of things as well. And that's where families are building with SDA funding their own SDA homes. 

Oh, neat. 

Yeah, you can self-fund it. So the government gives you the funding and then obviously you go and get the loan and you build your SDA accommodation for your son, daughter, whoever you're building it for.

And obviously you're only getting the funding per year, right? But that's your return. So you just take the funding per year, or whenever you claim it. And that puts money back into your mortgage, I guess, is the best way to put it. So they allow the self-provision of SDA as well.

Amazing.

So we're even looking at options. So I'm all about thinking outside the box and, you know, I could talk for hours on that. But even options like we

 have a lot more modular homes because they're quicker builds. And so whether it's possible to build modular offsite and for families who have extra land, can we then move that little modular build to the back of their house? Like a granny flat model, right? From the SDA funding side. So, you know what? Children who become adults, they have independent living, but they've got to supportive family near them. So, look, these are all things that people are canvassing, including Disability Housing Solutions. And it's just about making the model work and working out, OK, what do people need? What are people looking for?

Mm hmm. So you have a wait list of people looking for SDA homes.

Yes. Depends on the area. So it's a good example. There's an area in Queensland. I'm in Brisbane, Queensland called Gold Coast. So that's where all the beaches are. There is a large amount of demand there. So we are trying very hard to get builders and other people to build there. But I get the chat. See, I get both ends. It is expensive. Land in the Gold Coast is through the roof. And SDA build is more expensive. So, you know, people get angry when you talk about the finance side of things. But we have to understand that investments have to work as well. So I get both sides. Right. And so it's a challenge to bring SDA into demand's area. So another coast is the Sunshine Coast. There are zero robust SDA builds there. So I've connected with, because I told you it's my passion, the hospitals and local developers and builders to give them the demand data that our company has produced to say, look, there's no one building there. Can you make your figures work and get some robust there? Let's work with the hospitals to get, I guess, a pipeline of people ready for discharge so that they're not stuck in hospital forever or for ages. And so these are the new things that I'm really passionate about. And I want to work on getting occurring in Australia, and especially in those demand areas, because then we have the opposite problem. There are certain areas where there's just too many SDA's and not enough people needing it. Or wanting to live there.

Right. So do you cover all of Australia?

We do. We're national providers. Majority, yes, a majority of our builds are in Queensland, but we are expanding as well. And so we've always been national. But, one of the things is why I like this company, we don't just go yes, yes, yes to every investor. We look at the data, we look at the demand, we look at the build style and the floor plan and discuss; OK, what's the point of taking you on if we don't have the resources to find tenants for you or participants? Or you really have built in a terrible area. And, you know, we don't want to take on too many in that area because we're taking your money, but not able to fill your home. So we're really, really careful on that assessment. And that's why the expansion has been slower rather than quicker.

Mm hmm. OK. So then you find tenants for these SDA homes. And so you do the matching just to make sure that…

Absolutely. You got it right. So one of the frustrations I personally have is obviously NDIS are funding SDA on a shared ratio. So they want people to share. Now I get it. Again, I am a lawyer. I can play devil's advocate any day. Obviously, they can't afford to fund sole occupancy everywhere because the scheme already costs billions and billions of dollars, right? And it's it's huge debt.

And so they're saying, hey, adults, particularly adults and children are a separate topic right now. Hey, adults, we need you to share at the moment. They seem to just come out with share with you and two other people. And so usually what happens, unless they already know people, is you move one person in and then you get their profile, de-identify because we've privacy and basically, you know, you know. Joe loves fishing, blah, blah, blah, blah. And then you connect with the people in the disability sector saying, you know, this person is looking for a tenant. This is their profile. This is the description. This is what they love. Do you have anyone that would be a good fit for them, a good match for them? Because that's the other thing I like about where I work, which is just for the sake of the money, we don't move people in together. So we would rather say no. And our owners are educated to know that there is no point you moving, mismatch people in, because all that does is increase your risk of problems, property damage if they have an argument. I mean, wheelchairs can cause damage to property unintentionally. And so we're very, very good at that side of things as well, where we're careful about that co-tenant matching as well.

Yeah.

Sounds similar to our situation with our oldest. So we had, well, we still have it. We have a house in one area of Calgary. We live in Calgary, Alberta. So we have one house in which was our family home. And we left our oldest child there because it was wheelchair accessible. And my husband and I, our youngest child moved. And so we worked with an agency that provided, that provide the care, 24 hour care for our children. And they also did the matching. So that was their role was to get the staff, get them orientated, get them trained, the ones that needed it, because two of the young ladies are G-tube fed, wheelchair bound, using communication devices. And yes, so they were the ones that helped do the matching as well. So similar sort of thing, not putting people in there if it's not going to be a good match.

And we've got two layers, right? So we are the accommodation providers. So when I describe it, we do bricks and mortar, the structure. We don't provide the support. So you just mentioned, right, two are tube fed, etcetera. So the support is provided by other disability sector organizations and they we call them supported independent living providers or support providers. And so they also have the thing. So they might have one person who moves in and they also have the job of looking for the co-tenant sharing. So they give us the profile of why they think a good match. But we are the additional layer of checks and balances as well, because we don't we don't do the day to day right in terms of supporting this person. They would be more familiar, but we still have an overlay and compliance obligation to make sure that whoever these support providers have said, oh, there'll be a good match, is that true? And so example of a precondition is you must always have a meet and greet. Right. Make sure they meet, see what they think, what happens, you know, all that sort of stuff. And we have to be cognizant as well. And it's hard for me to say this because I'm a parent of a child with disability, but families also can be sensitive about their kids sharing. And so we have to keep that lens on that it may not be that they didn't actually like that person. They’re just worried about that whole sharing concept. So, you know, there's always challenges here, there and everywhere, depending on, you know, who it is in the in the property.

Yeah. We're fortunate with our property that each of the young ladies has their own bathroom. 

Yes. 

Yeah. So that's been a blessing. And we were able to access, well, not necessarily us, but each of the young ladies were able to access funding to make any further adaptations that needed to happen in our house.

So there's modification funding in Canada? That is brilliant. 

Yes. 

Because that's another category of funding in Australia. So instead of getting the SDA, the Bricks and Mortar House funding, you can get, if you qualify, home modification funding. So funding to modify your existing home to suit your needs. And if that's possible, then and it's cheaper than NDIS, of course, is going to choose that pathway. 

Right. Yeah. For us it's we're in Alberta. So this is I don't I don't think it's for every province, but for Alberta, we have that opportunity. Alberta Aids to Daily Living is what it's called. And so that is wonderful. Yeah. One of the ladies had a bathroom renovation because they're in a wheelchair and use a commercial shower. So they took out the bathtub and they redid everything and just made it a roll in shower. And then the other young lady is in the basement, which is like a bright basement. But she has some mobility issues. So they got funding, her family got funding to put in a stair lift. She can actually do the stairs, but when she's tired, it's just nice to have that option. ***CORRECTION: The RAMP program provided the funding for the modifications. AADL provides many other benefits for persons with disabilities. ***

Yeah, Yeah. Well, we recently had a case here because, obviously as a lawyer, I also follow the the legal cases where NDIS funded the installation of a lift in a two level house because one of the, and it was a child in this case, was in a wheelchair. And obviously it's important to be able to access your whole house is always connect with your whole family as well. So that was that was a good positive decision. We've got challenges here with NDIS being inconsistent. And so the message I always get is fight for it, you know, because if you've got a right for it, don't give up. But it's painful. I did my own daughter's tribunal matter. So it is exhausting and I'm a lawyer. I should know better, but it damn near drained me. So what chance does someone else have who doesn't have the background? 

Right. Exactly. I'm loving the conversation and I'm just loving that different areas are doing different things to help people with disabilities and that housing is something. I know when I was first a parent, this is my first time being a parent, our oldest, and we were told she was only going to live a year. But we are just so thankful and blessed that she's still here. She's going to be 23 very soon. 

Wow. Love it!

And we never thought about anybody else taking care of her. I don't know if you were the same. I was thinking that Scott and I, my husband, were going to be taking care of this child until we died. And so the thought of thinking about future for her and living independent of us as parents, it just, just never ever occurred to me. But I am so thankful that we have had the opportunity to do this. And that's why I do what I do, because I want to give other parents an opportunity to think about, just consider what it might be like to have your child living independent of you. And so I'm so thrilled to be on this journey and just understanding how other areas are doing this. And it's just so amazing to hear that Australia have taken this on and that there's actually entities that actually help people with buildings and that there's the self-directed one that you can do. 

The self-provider.

So if you were in Australia, potentially you'd be one of those, right? Because you've got a house that's purpose built or purpose modified for your child. So you would have to register as a self-provider because there's still compliance obligations that you would have to meet. But they allow that because I am the same like my daughter's disabilities aren't anywhere near as complex as, let's say, someone who would be SDA funded. But I still wonder, oh, my gosh, what is she going to do in the future? Right. Given some of the social challenges, you know. So I cannot even begin to imagine what it be like as the disabilities get more and more complex about what happens, you know, when I pass away, what happens to my child if they're reliant on me for 100 percent care? But I'm scared because you hear about so many bad things happening to vulnerable people and it will take the leap and I get it. I get the fear. I don't have an answer. But I think it's amazing that you actually jumped into that.

It will be seven years, actually, in a couple of days that we have done this. And it's just been a journey. And yes, I agree with you. Bad things do happen. I'm not going to sugarcoat that. It does. But we do all we can to mitigate it. But just being aware that it can happen is definitely huge. But still, when I think about it, when you think about the percentage of things that can go wrong to the fact that things can just be so amazing, it's huge. Right. 

So that's what you've got to keep in mind.

You know, exactly. When I think about the growth that my child, all three of the young ladies, we've just because we've they've been together from the beginning and just to see each of them grow in their own way and the independence that they have. And you know, what's beautiful, is I don't have to be a caregiver. I can go and visit and be a mom and she can come and visit us.

I've seen the impact of care about forget even in me. And like I said, my daughter's disabilities aren't as complex. But because I work with people with complex disabilities, and like I said, one of the advocacy matters I'm looking at with a colleague of mine is a 13-year-old child and, and the effect of care burnout on the parents because one parent has to work because someone has to earn an income. And the care burnout thing is massive. It's just massive, especially if you're also talking about behaviors of concern that involve violence. OK, because then you're also fearful, you know, of those triggered behaviors. And as they get older, they get stronger. So, you know, it's it's it's a real thing.

Yeah. Yes. People that we know from when our children were young, they had a similar setup to us for their son. And I didn't even think this was a thing. But they, she called me and she said, Val, the agency that are providing care for my son, they've given us three month’s notice. They're pulling out. I'm just like, you have got to be kidding. I didn't think it was a thing. I didn't think people could do that. Anyhow, the agency that provide care for my daughter and the other two young ladies that live with her, I called up the president of the company, I'm like, hey, I need to talk to you and explain what happened. And just so grateful. This company, this agency actually took this family on as well. 

Yeah. 

It was part, I'm wondering if part of it was because of behavior, because this child does have behaviors. This child was doing damage to the home. The parents owned the home. That's why they bought a home, because they knew that this was a possibility. But I'm just so thankful and grateful that this are the agency that work with our family, have been able to take on and help this other family through, I'm assuming can only have been an extremely trying time. Trying to figure out why.

I think support workers, particularly not that I should distinguish, but particularly dealing with the complex behavior side, should get paid a ton of money. Because even though the robust houses are designed, so as an example for a robust house, they don't have any corner ends. You can always escape, because and we always have, at least when we are involved in the picture, we make sure that from the carers room, there is an extra exit door.

So we will never have a place. So the kitchens will never have a corner that the support worker can then be trapped in. It'll be around things so they can run around. And there's like usually a benchtop in between, with rounded edges.

So it's all about predicting all of that and trying to make the accommodation, you know, as suitable as possible, both for the participant, but also for the carers, because they are the ones, particularly the behaviors. Look, honestly, it's scary. I've read reports all the time because of what I do, where you've got carers being chased by a knife because a participant has been triggered. So, you know, it's tough.

Absolutely.

OK, Niti, where can our audience go to find out a little bit more about you and feel free to share about the company that you work for. How can they find  your company?

Look, guys, if you want to know more about me, I'm on LinkedIn, so look up my name. I'm sure the spelling will be told to you guys on this post on LinkedIn. I do post regularly there about cases, strategies for housing construction, whilst all the government funding wouldn't apply to you guys, at least the housing construction side of things, maybe I can help you. You're welcome to reach out to me there. The other thing, Disability Housing Solutions is an SDA provider. So please go to the website and you can even get an idea, guys, of what those houses look like, because we have videos as well as photos. So you can see when we say, you know, fully accessible, what they're designed like. Like just today, there's a post on there about one of our high physical support homes in Redland Bay, and it's a video. So go and have a look, because then you can get an idea if you're thinking about this journey where you are. Oh, OK, this is this is what we need to look for. Robust is a little bit different, like I said, because you've got to change the way you think. And I'm happy to provide guidance on that because we manage robust properties as well. And they're in demand in Australia. So look, reach out to me, reach out to my company, go and have a look at our videos. You know, that's what we're here for, spreading education, no matter which part of the world.

Thank you so much, Niti. So, before we conclude our conversation, I'd love to hear some words of encouragement from you to parents who are raising children with disabilities. What message would you like to share with them to offer some hope and inspiration?

Guys, it's exhausting. I, that's not hope and inspiration, but it is what it is. But, you are your child's strongest advocate, and you can do it. So if you're having a bad day, and I have many, I apparently had one yesterday. You just have to remind yourself, I'm going to get through this. And my child needs me to get them through this and forgive yourself. I still struggle, by the way, with that. Every single day I feel guilty about something, but try, try hard to forgive yourself because you didn't do anything wrong. What you're doing is supporting a child that has complex needs. And that is not easy because there is no Bible or book even for a neurotypical kid, let alone for one that's living a different journey. So that's my message. I have no answers, but I can just say, hold on. There's a heap of us out there going through this journey.

Yes. Yes. And community is huge. And just know that you're not doing this alone. I know everybody has heard this a million times, but it's true. You're not on your own. All right. So Niti, thank you so much for being here. 

That was fantastic. 

All right, audience, I want you to keep building your child's future.

Remember to live with intention. Embrace the journey.

Thanks for joining me today on Forever Home for our kids with disabilities. I hope today's episode gave you something new to think about and it increased your confidence on your journey. If you found this episode helpful, do tell others about it.