Have you ever felt that you had to accept a model of support that was designed by a service to meet their own needs instead of yours? Or that your housing funding and housing options were based on wrong assumptions about you? You may have heard comments like, ‘this is how it’s always been’ or ‘this is how we’re funded to do it.’
Having the right support when and how you need it is critical to living in your own home. A very important step to achieving this is to describe your support needs and preferences in as much detail as you can, so that everyone’s clear about what you want and need. This kind of description can also help you provide the right information to the NDIS.
In this article, we talked about making a ‘schedule of supports’. This article will help you to do this; but it’s only a start. Your support needs and preferences will keep changing throughout your life, so it’s good to think of it as a work in progress. Think about it regularly and make changes so that the description is exactly right for you at any point in time.
Changing the way we think about support
What if we all change the way we think about support and support models and how it relates to housing options, and we move to a truly personalised approach which is led by you? Support would then be provided in the way you want, when you want it, and how you want it. Your support model would uphold your human right to have choice and control over what happens to you, and around you. This is what we mean by individualised living.
But how do we do it?
Talking about more than ‘24/7 support’
Firstly, we need to move away from talking about support needs and support models in the usual way. For example, saying you need ‘24/7 support’ might be technically true, but this phrase doesn’t really tell others enough about you. It can also lead to people assuming things about you and your housing needs that aren’t necessarily true, such as:
- You only want to live with other people with disability
- You can’t ever be alone
- You’ll only ever be funded to live in a group home
- You need someone else to help you with all your activities
- You can share all your support with others.
How to describe your support needs
A great start to describing your support needs is to answer the questions in this article. This can be done in any way that works for you and either alone or with someone you trust; or in a supported conversation with someone who acts on your behalf. Someone like a trusted Occupational Therapist or Support Coordinator could also work with you on these questions and put them in a document .
However it happens, your voice, opinions, preferences, wants and needs should lead the process.
What activities can you do:
- Independently: without any support from another person or any adaptive equipment or assistive technology?
- Independently with equipment: with the use of adaptive equipment or assistive technology?
What activities do you need support for:
- Distant support, where the person is watching what you’re doing and giving some prompts and instructions along the way?
- Close support, where the person is talking you through all the steps and planning for the activity, but doesn’t need to provide any hands-on support?
- Setting up the activity, and then you can do the rest alone or independently?
- Physical assistance with some of the activity and you can do most of it?
- Physical assistance with half of the activity and you can do the other half?
- Physical assistance with most of the activity and you can do a small amount?
- Physical assistance with all of the activity?
- Sleepover, where the person is asleep overnight?
- Active where the person is awake overnight?
What other types of support do you need? What other detailed descriptions about you and your needs can you think of?
Where does the support person need to be?
- Right next to you?
- In the same room as you, but not right next to you?
- In the same dwelling (apartment, house, villa, townhouse, duplex, caravan, etc) as you, but not in the same room as you?
- Close by, but not in the same dwelling where you live?
- What does ‘close by’ mean?
- How quickly does the person need to be able to be with you? 5 minutes? 15 minutes? 30 minutes? 1-2 hours? Other?
What other detailed descriptions can you think of, about where your support needs to be?
How much time can you be completely alone, with no support in your dwelling or close by?
- All day and all night
- All day but not at night
- Not in the day, but OK at night
- For a specific amount of time, for example, 3 hours; 2 hours; 1 hour.
How much time can you be alone in your dwelling, with support available close by (close by means they can be with you in 15 minutes, at the most)?
- All day and all night
- All day but not at night
- Not in day, but OK at night
- For a specific amount of time, for example, 3 hours; 2 hours; 1 hour.
How much time can you be alone in your dwelling, with support in another room?
- For a specific amount of time, for example, 3 hours; 2 hours; 1 hour.
What other detailed descriptions can you think of, about when and how you like to be alone?
And when you are alone in your dwelling, and support is close by in another dwelling or another room, can you call for help?
How do you call for help?
Think of all the different ways this might be possible:
- Call out using my voice
- Use a communication device
- Push an emergency device I am wearing
- Push a button on a wall
- Use an iPad
- Make a call on a phone
- Any other ways?
Can you think of any equipment or assistive technology that could let someone know you needed help? Things like sensor mats if you fall or step out of bed; shower timers that alert someone if the shower has been running for too long; sensors in rooms that will let someone know if you haven’t moved for a long time;
Your answers start to change things
Now that you have really thought about your support needs and preferences using the questions above, you can put the information together to lead the process in how support happens for you in your life.
So, you could say, “I need 24/7 support.”
Or you could say, “For days when I’m home….
| From 8:00am – 10:00am | I need physical assistance to get out of bed and some set up assistance and physical assistance for my morning routine. |
| From 10am – 12pm | I need support close by for an emergency or support for problem solving, but not in my home and able to get to me in 5-10 minutes |
| From 12pm – 1pm | I need set up support and distant support for mealtime |
| From 1pm – 3.30pm | I need support close by for an emergency or support for problem solving, but not in my home and able to get to me in 5-10 minutes |
| From 3.30pm – 4pm | I need set up support for some activities. |
| From 4pm – 6pm | I need support close by for an emergency or support for problem solving, but not in my home and able to get to me in 5-10 minutes |
| From 6pm – 7pm | I need set up support and distant support for mealtime. |
| From 7pm – 9.30pm | I need support close by for an emergency or support for problem solving, but not in my home and able to get to me in 5-10 minutes. |
| From 9.30pm – 10pm | I need some set up assistance for my night-time routine and then physical assistance to get into bed. |
| From 10pm – 8am | I need sleepover support close by but not in my home and able to get to me in 5-10 minutes. |
And “In summary, I need….
- For 2.5 hours per day I need person to person physical assistance.
- For 2.5 hours per day I need set up support and distant support for mealtimes.
- For 9 hours per day I can be alone in my home with support close by, but not in my home, and able to get to me within 5-10 minutes. I can call for this help via an icon on my ipad that is attached to my chair.
- For 10 hours per night, I need a sleepover shift that is close by, able to get to me in 5-10 minutes, and I can call for help via a button that is within reach of my bed.
Describe the support model and housing option that works for you
Now that you have a detailed description of your support needs, you can describe a support model and housing options that meet these needs. You can start to see all the things that might help you to live successfully in your own home. Equipment and technology is a great example. You might also see where skill development can help you be more independent.
Having this detailed description also helps you think about the kind of people who might help you. In this article, we shared some videos of people who are getting support from their housemates and neighbours, and using NDIS funds to help with that. You can also see what might be risks for you and what would help keep you safe.
In the example above, it could be that the person lives with a friend in a 2-bedroom ground level unit; the friend can provide the setup and be around at mealtimes; there are 3 units close by with other people who have support too. A support worker unit is in the middle of the units with technology that connects to everyone’s units. The person can call on the support worker for the emergency and problem solving support and sleepover support. The person has their own chosen support worker for the times when they need physical assistance.
Are there other ways you could imagine this person living?
Keep going!
You now have personalised, detailed information about your support needs and preferences. You can keep working on your summary, making it more and more what you need and want.
As mentioned, this is a very helpful process to do with a trusted supporter, OT or support coordinator to make sure they are working with you to provide the right information to the NDIS and to help you organise the right kind of supports.
About the author
Cath Bucolo is a qualified speech pathologist and has worked at the intersection of health, disability and justice for 25 years. She has experience in establishing and working on multiple national and state-based projects and teams, to train health and community services practitioners about various topics including – acquired brain injury, the NDIS, specialist disability housing, and how to work in a person-led approach.
