How to make the most of your choice and control under the NDIS

Updated: May 15, 2019

Building your capacity for success in the NDIS

Written by David Swift and Ali Strachan

Young man laying on couch makes NDIS choice and control work for him, what about you?

With the introduction of the NDIS, Australia has been undergoing a cultural shift toward recognition and inclusion of disability rights. If we view the NDIS as a starting line for this movement, we ought to recognise who is standing at that line, and how the opportunity for choice and control impacts them, so we can support them going forward.

This article has been inspired by conversations with consumers (participants entering the NDIS) south of Brisbane. They’ve encouraged me to explore the social, psychological and emotional changes we are all undergoing in the transition to the NDIS, and provide some insights into how we can build our capacity for success.

What does choice and control mean under the NDIS?

Through independent advice from a range of experts and through consultation with providers, carers and people with lived experience of disability, the NDIS Board heard that in order for people with disability to live a ‘good life’ and achieve better outcomes, they needed to have choice and control over the pursuit of their goals, the planning and delivery of their supports.

This ‘good life’ is largely dependent on:

· Where we live

· What we do

· How we feel

· What and who we know

· What we eat

· What we think

· How we love

· How we grow and

· How we belong

According to the NDIS Factsheet on Choice and Control, there are eight principles that underwrite these rights:

1. Choice – the NDIS should maximise opportunities for people with disability to plan and design their support arrangements.

2. Control – each person should be able to choose how much control they want over their funding, supports and service providers and be able to change this control over time.

3. Presumption of capacity – the NDIS should presume that people with disability, with the right support, have the capacity to exercise choice and control.

4. Design – each part of the system should be designed to ensure people with disability have maximum choice and control.

5. Minimum Intervention – the design of the NDIS should seek to intervene in people’s lives in the least intrusive way.

6. Minimum restrictions – any restrictions on choice and control should be minimal and evidence based. Clear information should be provided to people with disability, their families and carers so that these are transparent and easily understood.

7. Inclusion and flexibility – decisions about supports and how they are managed should be inclusive and flexible as a person requires. Decisions should be directed by the person with disability and anyone else they wish. Decisions should be revised as a person’s needs change.

8. Dignity in risk people with disability should be allowed to determine their own best interests, make mistakes and learn from those mistakes, so long as the person, or others around them, or their support arrangements are not put at significant risk and public resources are not wasted.

Choice and control: Adjusting to the shift in approach

Up until now, the previous disability services funding model has limited the choice and control we’ve had – which in turn has limited our ability to achieve real personal success. Now, via it’s eight principles on choice and control, the NDIS encourages a proactive approach to arranging support and living your life. There are three main ways that I’ve seen a proactive approach being employed:

Socially – Attending and participating in workshops, meeting with organisations and networking with peers to learn more about the NDIS and discuss opportunities.

Psychologically – Preparing for the NDIS Planning Meeting by acknowledging our responsibilities and taking the necessary actions (despite our doubts) to achieve our goals.

Emotionally – Working towards emotional resilience, but with an understanding that this process of applying for and managing the support we need puts us in a vulnerable space.

Peer to peer and family support helps you make the most of your choice and control under the NDIS

Peer Support: Learning from others

As individuals, many people with disability have spent their entire lives asking for help in one form or another, whether it be from a family member, support provider, carer, or other societal system. It is a culture of shared responsibility over the outcomes that affect our lives.

The NDIS, while offering support, also offers a new way of managing that responsibility. We now have the choice and control to decide how we implement our supports, who we ask to help us and in what ways – but we are now also responsible for the successes (and the failures) that arise from these choices.

In some ways, the variances and enormity of these choices can feel overwhelming in such a complex system as the NDIS – and it takes some mental adjustment to get your bearings. A valuable way of doing this is to seek out peer support.

The benefits of building peer support relationships are many. Studies have shown that in the areas of mental and physical health, and disability care, the benefits are extended to community, organisational and societal levels.

Associations like the Queensland Disability Network (QDN) offer regular support groups across different areas of Southeast Queensland to assist people with informational, emotional and social support. And this is critical as we adjust for the rollout of the NDIS.

As a member of the QDN Logan Support Group, I’ve been attending meetings regularly for some time. Here I’ve engaged a variety of people with disability in discussion about the NDIS and what it means for everyone.

The QDN peer support group, which is made up of friends, family and peers with the same or similar disability experiences, assists people by:

· Sharing information and working together to understand the NDIS systems and processes, to prepare for the implementation of the NDIS

· Discussion around pre-planning and the information to include, how to write effective goals

· Discussion about how to advocate for ourselves and our rights

· Sharing of experiences from other NDIS workshops and events, with providers, planners and recommendations of services and supports

· Sharing ideas around support strategies and flexible implementation of supports

The benefits of having someone to hear your frustrations, your doubts, encourage you to take action and keep you accountable has been very beneficial. If you haven’t done so already – you might benefit from finding a peer support network that aligns with you and your goals.

How do you find or join a peer support group?

Peer support groups can be formal (run by an association or organisation such as the QDN), or informal (made up of like-minded, family, friends or acquaintances who have similar experiences or needs).

If you are unsure about what support groups are in your area – you could ask your existing service provider to see if they run any information sessions, or groups that cater to your specific needs on a regular basis.

Disability support organisation (DSO) supports face to face and online groups of people with a disability who can’t meet face to face.

An alternative to this, is to reach out to others who attend local NDIS workshops and events, or other families that attend or are involved in other local services and suggest they form an informal support group with you.

The Peer Connect Network also has a lot of information and resources about connecting with a peer support group.

Choice and control: Psychological preparation

Surprisingly, there has been little emphasis on the psychological changes we’re all making in preparation to take on the responsibilities of the NDIS.

While we are busy gathering information and trying to understand what the NDIS is, its benefits and support it provides, it’s equally important to do the internal work and acknowledge our role in moving forward. With choice and control comes responsibility – and because the current culture for people with disability is one of reliance on others, the ability to step up into this proactive role might present as a challenge.

Many people already know how to talk to their service providers and can seek their help and advice on how to construct a plan that aligns with your goals and aspirations. The approach to preparing for NDIS is not very different from this.

Here are a few other ideas to help you;

· You may need to prepare to ask informal support (unpaid carers such as family and friends) for the first time to meet with you to discuss your proposed plan for the NDIS. This will help you get the feedback you need to strengthen your funding application.

· Simplifying the process and taking things one step at a time – using tools such as the First2Care pre-planning template can make the process easier.

· Seek support to help you to maintain a positive can-do attitude through the process.

· Stay focused on what is relevant to you. There is a lot of information out there and if you stay focused on your own goals and aspirations, then it will be easier to make the choices you need to make.

· Peer and social support relationships can help to shield you from the stress of overabundance of information.

· Get creative with your planning using colours can assist you to remember things that are important to you.

· Focus on activities and the people you know will sustain and motivate you during the transition into the NDIS.

· Draw a mental line in the sand of where the old system ends and the NDIS landscape begins and move forward with that line in mind. This is about drawing a boundary on past experiences and being open to new ones.

· Acknowledge your doubts and fears and don’t try to squash them. List ways in which you might get support to overcome those fears so they don’t paralyse you and stop you from taking action.

Choice and control: Emotional preparation

The very nature of change can make us feel like we are being pushed and pulled in all sorts of directions. One minute you might be filled with excitement of realising your vision and goals, and then the next you might feel frustration or despair at realising the limitations of gaps in the NDIS. Family and friends can help provide perspective and assess the information and the possibilities. They can help remind and encourage you to keep going – turning on a light when all seems dark.

In times of change, it’s important to keep doing the things you know will sustain you and help build your resilience. In conversations I’ve had, we recognised some feelings of uncertainty in the transition towards the NDIS.

Dr Ken O’Brien supports the idea that emotional fitness is akin to physical fitness. He argues that both physical and emotional fitness requires:

· Mental preparation and planning

· Basic skills and abilities

· Moving out of your comfort zone

· Allocation of time

· Some pain is involved (sweat/soreness vs awkwardness/memories)

· Needs/may require a support network

And they both provide:

· Social, psychological and personal rewards

· Improved health and longevity

And he argues that effort is taken to maintain and build emotional fitness, you’ll see a positive improvement in focus and determination that leads to resilience.

How do you build resilience in the face of choice and control?

We all understand the importance of being physically fit, the same goes for emotional fitness. It requires you to be proactive in maintaining your emotional health. This comes from acknowledgement in the need for support – but also taking time to relax, reflect and be creative in your approach to problem solving.

You might follow these steps in helping to build your emotional resilience:

1. Acknowledge your doubts and fears – and talk to friends and family about them. Recognise that it’s okay to need emotional support in the face of change.

2. Balancing optimism with realism – research has shown that resilient people acknowledge the problems they face, but don’t dwell on them. They stay focused on their goals, and are open to new ways of doing things, such as going online to seek support and do their planning.

3. Face your fears – by getting the support you need to break down your fear and take steps to overcome them. If you find the pre-planning process overwhelming, get support to break down those steps so that you focus on one small task at a time until it’s all completed.

You might find it surprising to learn that the journey of preparing for the NDIS can stimulate personal growth through change.

Everyone finds ways of flowing through change in their own ways, and I hope you can apply these principles to your life, and find the support you need to succeed within the NDIS.

Over to you

We’d love to know if what support you’ve had while preparing for the NDIS. Do you have a good peer support group? How are you tackling each step of the pre-planning? Let us know in the comments.

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