This article was originally published by Summer Foundation on 28th February 2020.
Tom Butler Q & A
Tom Butler is the provider of his own Specialist Disability Accommodation (SDA). He moved into his SDA unit in Tasmania in 2019. We asked him about the journey to becoming his own SDA provider.
Please tell us about yourself
In January 2000 I was 19 and back home in Tassie after completing my first year in the Air Force at the Australian Defence Force Academy in Canberra. I went for one last swim with some mates the day before I was due to head back and very thoughtlessly took a very deep dive into what turned out to be very shallow water. I broke my neck and was left a complete quadriplegic at the C4-5 level.
After rehab in Melbourne I came back home to live in a unit next to my dad’s and his wife’s house and had support from my parents and carers.
What motivated you to go down the SDA path?
I had known for several years that I needed to move out at about the time my dad needed to retire from work. I went on the State “housing needs register” but I never heard back with any suitable accommodation options over those years. A small (and cheap!) block of land came up for sale in 2016 in a great location, near my parent’s houses and shops and the beach. So I took a bit of a gamble and bought it without knowing whether I could live by myself even with the NDIS rollout on the way, and knowing that the finances would be very tight.
How did you come to be your own SDA provider?
A friend of my dad’s gave me some info about SDA in early 2017. I took a quick look at it and didn’t really understand what it was about. Then a few months later I read an “Every Australian Counts” newsletter article about the SDA Rules being released and there was a small snippet about an allowance in the legislation for participants to be their own provider of SDA. A couple of inquiries and a significant amount of reading later it dawned on me what a game changer SDA was!
From that point on SDA became my main focus. Luckily I was still in the design phase for my unit so I was able to change my design to meet all of the LHA/SDA design requirements. I found an OT who had SDA experience and made an appointment for just after I started with the NDIS in mid-2018. I was approved for SDA by the end of the year, which was a great early Christmas present!
My build started in 2018 but it took up most of 2019 and I finally moved in in December. I registered as an NDIS SDA provider earlier in 2019 through the previous State-based system. I enrolled the dwelling once it was completed and have now received a couple of SDA payments, which greatly helps with my mortgage repayments!
What was the most difficult part of the process?
The most difficult part for most of the time was the uncertainty of my eligibility for SDA. Ideally I would have been approved for SDA before starting to build, so I had a better idea of what I could afford, but I didn’t have the luxury of time as I needed somewhere to live and I was determined it wasn’t going to be a nursing home or group home.
Unfortunately at the time there wasn’t much info around on who exactly would qualify for SDA and for which types of design categories. So it was a great relief when I finally got the SDA approval.
The next most difficult part looks to be me needing to renew my registration sometime this year through the new Quality and Safeguards Commission. There are policies and procedures and audits, mostly irrelevant to a participant provider like me, that need to be worked through.
Did you have much/any support to navigate the process?
It felt pretty lonely at times, with me having lots and lots of questions and not many options of where to get answers from. But I’m a bit of a research-aholic and I read all the great material that organisations like the Summer Foundation and Disability Services Consulting published on SDA. And I found others who were on the same path through Facebook, email, phone and in-person and we all helped each other where we could.
What would you say to anyone else thinking about building their own SDA?
If you’re like me and have always wanted to build your own home then it’s a no-brainer, do it! I’m someone that struggles for energy and motivation at the best of times, but I can say that there is no better motivator than having an uncertain housing future. Now I have my own place and you can’t beat that for housing security.
It’s not going to be for everyone though, it takes a lot of time that unfortunately some people don’t have, especially parents trying to do the same thing for their disabled children. I’m hopeful that there will be some rent-to-buy schemes or similar by other SDA providers that could be another pathway to homeownership for individuals.
Were there unexpected things that came up? What were they? How did you deal with them?
There was uncertainty about the tax implications for participant providers of SDA. Early on it seemed like SDA payments to participants would be taxed, which would have been a bit of a disaster for people solely on the DSP being able to afford a house with SDA payments, given that the pension decreases by 50 cents in the dollar before tax.
I applied to the ATO for a ruling on the tax status of the payments at the end of 2017. It took ages to get a decision but happily the decision came back that it was not to be taxed!
Top tips for others thinking about doing this?
Building houses can take a long time. So can getting approved for SDA and registering as a provider. You need to pursue both at the same time to avoid big delays.
Read the SDA Price Guide, Rules, and Design Standards. And then read them again!
Ask lots of questions. I have a Facebook page “NDIS self providers of SDA” and there is also “NDIS SDA Needs” which have people helping each other out.
Reach out to banks like Bank Australia to get an idea of your borrowing capacity. They are a community bank and know about SDA, and can potentially lend money taking into account the future SDA income. Hopefully this will mean people will be able to own their own home who otherwise never would have been able to.