What has helped families to have a successful, helpful NDIS package?
Families can collate evidence from professionals such as your GP, mental health treating team, community-based service providers, or any therapists that may have been involved. We can provide professionals with some information about the NDIS approach, so that their reports will be helpful. The person with mental health issues can write a Participant Statement, or we can assist them, based on conversations they have shared with us about their goals, needs, and wants.
We can also tell our story of having mental health issues in the family through a Carer Statement. Each family member can write their own Carer Statement, including Young Carers or siblings and extended family. This information with assist NDIA to better understand the nature of supports required in daily life, and why these are necessary.
What do you mean by evidence? How does all this fit with recovery?
Naming the ways life is different for our family member than for someone without a mental health issue can feel quite exposing and difficult at times. Medical reports, assessments, and letters of support that outline the barriers to living an ordinary life can be blunt and uncomfortable to read. It does help to create a sense of urgency that prompts professionals to support our family member better, and outline how much stress we may face from day to day, without the right help in place.
Once we receive the NDIS funding we can go back to working in ways that are recovery-oriented and based on your family member’s needs. It may help to explain to your family member that the process itself may not feel good right now, but that hopefully the support from the NDIS could give them a better experience of their life. Hopefully the NDIS can also reduce pressure on family relationships to meet all of your family member’s needs.
This NDIS process is a lot of work – who can help?
You may find having a counsellor, supportive friend or assistance from local services helps you or your family member as you gather evidence. It can be an emotional time for many people. There are services available to assist with this access process. If you are not sure who may be able to help you, contact Tandem. We may be able to direct you or provide support about the next step for you.
You may be aware of professionals who have a copy of past assessments, or reports. See if they can help to write a letter of support for the NDIS, or outline in a report key challenges faced in the last two years. Specific information of risks, barriers and difficulties is more useful than general information.
What would help the professionals in our care team to represent our situation well for the NDIS?
The following prompts may assist professionals to create reports and collate information useful for you to use as evidence toward an NDIS plan, or an NDIS review.
Understanding the NDIS
- The NDIS is ‘deficit-based’.
- NDIS need to understand how life is different when someone experiences many symptoms and is most unwell.
- It is best to present a very honest, blunt account of difficulties and to show skills they cannot do, or can only do with assistance.
- NDIS planners have very little time to make sense of each person’s circumstances, and may not have a good knowledge of the mental health issue we will be sharing with them. Clear, simple evidence helps them to work with us effectively.
What to include in the evidence
- It is not helpful to discuss strengths in reports or letters.
- A table if possible, not a long written document.
- A list of:
- any barriers in attending to a person’s physical health needs, such as a need for additional support to assist them to attend appointments, or instances where behaviours and difficulties put you or others at risk. (perhaps yourself and a worker, or two workers may be needed in some situations)
- any difficulties a person has in leaving the house
- concerns around social isolation, lack of activities
- any difficulties a person has in getting to know new people
- difficulties in particular environments or particular sensitivities, fears or trigger situations
- difficulties in adapting to change, or a need for a slow, supported approach to new experiences
- the kind of reminders, prompts, or other tools and strategies you or other support staff try and how often you need to do this before you have the outcome you’re hoping for, with your family member (eg. to shower, to eat, to leave the house, to call a friend, and what
- observed impacts on the family. Professionals can state impacts on the family that they are concerned about
- risks to the person’s safety and wellbeing if family could not sustain their role and assist anymore.
We have created some tools to help you. Please download and complete the documents in the NDIS Tools section of this page.
What evidence is important to gather?
Professionals in the care team can assist to provide reports such as:
- Functional assessments – these can outline challenges in daily life such as personal care or food preparation skills. The WHODAS is one example of these. A case manager may direct you to what is appropriate in your situation.
- Neuropsychology reports – to show changes or inconsistencies in cognitive abilities such as concentration, processing information, attending to a task, or communicating needs.
- Victorian Dual Disability Report or behaviourist report, if appropriate for people with Autism, intellectual disability or an acquired brain injury, and co-occurring mental health issues.
- A brief timeline of:
- recent admissions or episodes of support from clinical services. Note difficulties that remain in home life or community participation outside of support offered by clinical services. This shows the responsibilities of health systems beside the responsibilities of the NDIA to assist with different parts of life.
- attempts to access support or services over years. Note difficulties in finding appropriate services. This summary provides context and shows long term challenges. It also shows NDIA that there are no options outside of the NDIS to assist in this situation.
- If multiple services have been used, list these too. This can be outside the mental health system. We have often been resourceful in looking for help, with difficulty finding anything appropriate to our needs or our family member’s needs. Name where you have tried, not only those that were helpful. This can also be listed by your family member in their Participant Statement, and by you and other family members in your Carer Statement.
What kinds of support in daily life would be important to mention?
It can be difficult to think of things that may make a difference when we have supported mental health challenges for many years. We may not recognise all the ways we provide support or how this impacts on the time available for our own needs, interests and goals.
A good way to measure the need for NDIS support in daily life, is to consider the following questions:
Is this the amount of support a person would typically require at this age, if they did not have mental health issues?
Is it appropriate for me to assist with this, or would it provide greater dignity, choice and control for my family member to receive help in this situation from someone else?
Support purchased is known as formal support. The NDIS does not directly provide for families and carers. Formal support provided may reduce your workload by replacing some of the work you currently do for your family member.
The NDIS considers family and friends informal support to a person with enduring mental health issues.
One approach is to link a goal to the resources required, outlining gaps in current support available, and sharing the type of outcome you would hope for with this support. This can be clearer for a planner to understand than a long written report.
Goals should be written in first-person, from the perspective of the person needing assistance.
They should be broad so that smaller goals can fit underneath these.
Example