When you’re a person with disability, it’s more than likely you have a whole host of professionals in your life. Allied health staff, disability support workers, support coordinators… and plan managers, like us!
Together, there should be strong working relationships. But the reality is that pretty much every relationship – personal and professional – will have a bump or two in the road along the way.
While you’re working with professionals, we’re all human, everyone makes mistakes, and sometimes we can miss the mark. At times like these, you may need to speak up.
It’s rare to find someone who enjoys confrontation. But there are ways of being assertive and empowered that can make sure you get the care and support needed – and which you’re paying for. It might take a difficult conversation or two, but it can be done!
NOTE: Difficult conversations don’t relate to concerns of abuse or neglect by a provider or professional. If you’re concerned about the immediate safety of yourself or a loved one, dial 000 for assistance.
To report abuse, neglect or exploitation to the NDIS Quality and Safeguards Commission, phone 1800 035 544 or visit the NDIS Quality and Safeguards Commission website.
To report abuse or neglect of a child (with or without disability), contact the child abuse report line or child protection department in your state or territory.
More general information about safeguarding National Disability Insurance Scheme (NDIS) is available here.
Did you know that communication is the most common underlying cause of complaints in the healthcare system, according to the Australian Commission on Safety and Quality in Health Care?
That statistic doesn’t include the NDIS, but we can conclude that this cause of complaints shows up in the Scheme too. If you’re finding communication is a stressor, take heart in knowing it’s a common problem – and there are steps you can take to fix it.
Service agreements may seem complicated, but their purpose is simple: to set out in writing what you can expect from a provider, and what they can expect from you. It’s key to creating better outcomes and a positive experience, and it’s exactly why a service agreement is recommended.
Check your service agreement to understand what your provider has committed to, and what you can expect from them, before you enter into a difficult conversation. If a provider isn’t fulfilling their end of the agreement, this creates a quick case to fix it.
When you’re having a difficult conversation with a provider, it’s key to know your rights. A lot of people avoid confrontation because they don’t want to seem ‘difficult’, but that doesn’t serve them. Knowing your rights as a participant can change that mindset, and help you to create a more convincing case, advocate for yourself, ask better questions, and hold providers more accountable.
The NDIS Code of Conduct sets out expectations of how providers and workers will conduct themselves when delivering services and it’s a good place to start if you want to brush up on what your rights are. It’s created to protect the health, safety and wellbeing of people with disability by setting out acceptable, appropriate and ethical conduct for NDIS providers and workers.
The requirements in the NDIS Code of Conduct are fundamental to the rights of people with disability, as set out in the United Nations Convention on the Rights of Persons with Disabilities.
You may also want to refer to the NDIS Practice Standards, which outline the legally binding quality standards that registered providers must adhere to. Together with the NDIS Code of Conduct, the NDIS Practice Standards can help you know what you can expect from registered providers.
You may choose to have an independent disability advocate speak, act or write on your behalf. It’s their responsibility to assist you to exercise choice and control and to have your voice heard in discussions about matters that affect you. You may also choose to use an independent disability advocate when you make a complaint.
For more information about how to find an advocate, click here.
If you have a support coordinator, they can speak, write and act on your behalf too.
It’s hard to get the outcome you want without knowing what it is. That’s why it’s good to head into a conversation with clear objectives.
Write down the outcomes you want to achieve, then work backwards and write down the questions you want to ask. This can make the conversation more structured and strategic, and geared towards serving you better.
In stressful situations it can be hard relying on your memory. It could also be good to prepare notes that you can refer to and even share after the conversation.
You might want to make notes about:
Don’t underestimate the importance of writing things down as they happen or as soon as you remember. It can help you and your providers identify any patterns, and it could be the key to finding solutions or resolving matters faster.
Alternatively, you could use voice notes or ask a friend or family member to take notes for you.
People with disability can experience barriers to having their voices heard, which is where advocacy is vital. In this case, it’s recommended to contact the NDIS Quality and Safeguards Commission and let them know.
The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability recognised these barriers and made specific recommendations around enabling autonomy and access for Australians with a communication disability.
The Disability Royal Commission delivered its final report – its vision for an inclusive Australia – in late 2023. You can find the easy read version here.
Most professionals want to do a good job. And they want to be able to fix things if they’re going wrong. If possible, bring an open mindset to your conversation and tell everyone you want to work things out as a team.
You could say:
Did you know that up to 90 per cent of communication is conveyed by our tone of voice and body language?
If you’re having a stressful conversation, it’s very common for your tone of voice to convey how stressed you are. And that’s okay.
Sometimes even just acknowledging that our tone of voice sounds harsh can be a way of dispelling stress around the conversation.
If disability impacts your tone, behaviour or body language, it doesn’t hurt to reiterate that, even for providers who’ve worked with you for a while.
For example, try saying something like: “I find it really stressful having conversations like this. I already don’t like making eye contact, so thank you for understanding that I definitely don’t want eye contact in this conversation. It’s not personal. It’s just me.”
Don’t be afraid to ask everyone in the conversation to slow down, repeat information, or even stop and take a break. It’s important you have time to collect your thoughts, understand what’s being said, and make your voice heard.
You could use break time to regroup, reassess your thoughts, go over any notes, or chat to your support person or loved one.
This could be a good way to keep the ball rolling and also make use of any notes you prepared or took during the meeting. You can reiterate your points, make requests, and play an active part in setting a plan for the future.
And remember, don’t delay a conversation. The earlier you can communicate an issue with your provider, the better – and also the earlier they can work to fix it.