Webinar: Younger Onset Dementia and the NDIS
Dementia Australia webinars are free videos where health specialists give you expert information about subjects relating to dementia.
In this webinar we are joined by Dementia Australia expert Joshua Moody, discussing what NDIS is and how it can benefit people who receive a diagnosis of dementia when they are under 65 years old.
You will learn about:
- what the NDIS is
- the process for accessing and applying for NDIS
- the areas of funding that may be available to you.
Transcript
[Beginning of recorded material]
[Title card: Dementia Australia]
[Title card: Younger onset Dementia and the NDIS]
Joshua: Hello, and welcome to this presentation on younger onset dementia and the NDIS. I'm recording this in Warmay* Country and I would like to acknowledge traditional owners of this land, Elders past, present, and emerging. My name is Josh. I've been helping people through the NDIS for several years in a range of different roles. I'm here to talk t to you today regarding some useful tips and tricks that will hopefully simplify the process, as I'm well aware of how daunting it can seem when you're first confronted with what you have to learn.
The information that I'm going to discuss during this presentation should remain current even as the NDIS process changes, which it does frequently. We will focus on the language used for the NDIS and providing some practical information to assist with not only understanding the scheme, but also having a successful experience. It is important to note here that if you access the NDIS before your 65th birthday, then you are not required to transition to My Aged Care after that date. You can stay on the NDIS regardless of your age. It is therefore crucial to begin the process well before this cutoff point whenever possible.
The first stage of the access process is to obtain evidence of disability. This must be provided by a specialist, not a general practitioner. It does not need to be an extended report. A simple paragraph similar to the one on the slide will be sufficient. It is best to treat any interaction with the NDIS as though they have very limited knowledge about dementia. It is therefore very important for a successful access request to provide documentation outlining that dementia is degenerative, and that there is no cure. Lifelong impact trauma disability is a requirement for access to be approved.
The second requirement for access to the NDIS is evidence of diminished daily functional capacity. This can be obtained through either a specialist or a general practitioner. Furthermore, it can be either a completed access request form, which can be downloaded from the official government website, or a separate extended report, or both. I would recommend trying to provide both documents to give a complete picture of how dementia impacts your daily life.
These dot points are very important. Once a diagnosis has been provided to the NDIS, they need more information regarding the impact dementia has on the categories displayed here. They don't need reports with any medical jargon or drug trials taken. They need simple language describing the impact dementia has on being able to complete the following.
Socialise: Do you have any difficulty in following conversations in large groups? Does this make you withdraw more frequently from these sorts of events? And has your friendship circle become smaller as a result of dementia symptoms and the anxiety that follows? Communication: Do you experience any word finding difficulties? And does this make it harder to express your needs? Mobility: Dementia can have an impact on coordination, balance, and visual processing amongst other things, all of which have an impact on mobility. Is navigating an uneven terrain difficult? Have you had any falls as a result of dementia? Learning: Do you have any difficulty in learning new skills, like catching a bus to a new place, or learning a new recipe? Self-care: Do you have any difficulty remembering to shower? Have there been any occurrences of consuming out-of-date food in the fridge? Do you need some help choosing the right clothes to match the weather conditions on any given day? And finally, with self-management: Do you have any difficulty organising a weekly schedule, paying bills, or making decisions about tasks you are confronted with throughout the day?
“Reasonable and necessary” is a phrase that the NDIS applies when assessing whether a support is appropriate to be funded. This term means that approved supports are relevant to a participant's disability. So any requested support must be linked to dementia, not to, for example, arthritis or any other ailment covered by the health system, or even a previous sporting injury. And it must not include day-to-day living costs unrelated to dementia support needs, such as groceries. They will fund for a support worker to assist you to do the shopping, but not for the groceries themselves.
The full criteria for reasonable and necessary is available on the NDIS website. If we think back to Sandra's evidence of disability in the earlier slides, when writing reports and documentation, the language needs to be specifically directed from the person with dementia's perspective.
So, Sandra, as a person with dementia, requires this support, not her husband, John. John might be experiencing carer stress, but we cannot state that John would like Sandra to go to the shops every day so that he can have a rest. We need to state something similar to, “Sandra would like support to maintain her independence in the community”. However, if Sandra has support in the form of someone to take her down to the shops and have a coffee with a friend, then John is also getting a break as a result.
What will the NDIS fund? Once you have been accepted onto the scheme, it is time to start planning for the meeting with an NDIS representative.
In a nutshell, “core support” is a term used to describe funding for support workers, whether this is in the form of cleaners, yard maintenance, assisted showering, or even help playing a round of golf.
“Consumables funding” is for the purchase of low risk, low-cost items that assist with aspects of daily life. These are items that don't need an assessment for suitability by a professional to purchase. You can simply purchase them off the shelf. For example, an alarm pill dispenser to improve independence and safety through alerting for medication times and preventing double dosing, a GPS watch, continence products, or a dementia-specific clock in the house.
The “capacity building” budget is most easily explained as therapeutic funding. Examples of supports that can be requested in this category include occupational therapists, exercise physiologists, and speech therapists. The aim is to improve functional skills through the application of skilled intervention by professionals.
“Assistive technology” is only improved once a thorough assessment of the most appropriate supports has taken place. This is to ensure that any safety risk is minimised, and that the most benefit will be achieved. Importantly, home modifications will usually only be approved by the NDIS if you own your own home and intend to still be there in five years’ time.
One of the most important supports that you can request funding for is called “support coordination”. If you think of your NDIS plan as a business, you are the owner and a support coordinator is your general manager. They look after the day-to-day running of the plan, find appropriate services for you, and gather reports prior to review time, amongst other things.
Plan managers are the treasurers or the accountants for the plan. They keep all of the receipts on file for you should there be an audit. They pay the bills and work together with the support coordinator to maximise the usage of your funding. There are other ways to manage the plan, but this option provides maximum flexibility with a minimal amount of stress on your behalf.
It is important to note that both of these supports involve additional funding being included in your plan. By requesting them, it does not mean that you are receiving less funding in another area.
“Specialist disability accommodation” is funding for residential housing. This is the actual bricks and mortar component, not the human support worker hours. This funding can be requested to cover the cost of the building that someone that lives in.
Supported independent living refers to the personalised daily supports one will receive while accessing specialist disability accommodation – so, the support workers. You may have the same provider for both supports or two separate providers. The choice is yours. These supports are only provided for those accessing the NDIS who have a significant support need, and thorough reports are usually required in order to meet eligibility.
“Transport” funding is a budget that is deposited directly into a nominated account on a periodic basis. If you are no longer driving, and dementia is making it difficult to use public transport, you can apply for transport funding. This is not intended for daily commitments, but is rather there for unplanned travel, such a taxi to the hospital if no other options are available. For any scheduled activities, the core support budget is preferable to use, as a support worker is able to drive you using this budget.
When writing goals for the NDIS planning meeting, it is always advisable to keep independence and safety at the forefront of your mind. These are some questions that you may want to think about when the process begins. When thinking of safety risks in the home, some may include out-of-date food in the fridge, double dosing on medication, stairs, bathrooms where there may be an increased risk of a fall or getting lost in public spaces. When discussing independence, place a higher degree of value on activities that are important for you to continue participating in that you might be having difficulty with, such as playing 18-holes of golf a few times a week, doing the grocery shopping, or travelling to visit family.
An example of a good common goal would be: Sandra would like to remain as independent as possible, both at home and in the community. This is a good goal, as many differing supports can be attached, including occupational therapy, support workers, both inside the house and in the community, home modifications, assistive technology, and transport. There is space to make several goals, so some of these additional goals can be more specific if desired.
We all know that dementia symptoms can fluctuate day-to-day, week-to-week. It is important that we answer all questions during the first plan meeting on a day where symptoms are particularly severe. This is so the funding and therefore support provided will be adequate to ensure safety and care during those times.
This WHODAS is one of the most important sections of the first plan meeting. It directly impacts on the funding. They will ask you questions on a scale from one to five, with five being the more severe response. It is a difficult section for some as human nature leads us to say, “Yeah, I'm okay and I can do that.” But for the WHODAS, it is important that you answer honestly and not downplay any symptoms you are experiencing.
The “About Me” section is a place to tell the NDIS who you are and what is important to you. By completing this section prior to the actual meeting, it shortens the time spent sitting down with the NDIS. This is a good thing, as it can minimise fatigue. There is no need to request supports in this section, but put down instead what you enjoy or miss doing on the weekend, community groups you're involved with, and a bit about who supports you, either emotionally or physically.
The final point on this slide is important. If you have a support person, whether that is a partner or a friend who you wish to be able to talk to the NDIS on your behalf, then they need to become a nominee. Without this process completed, there will be no communication from the NDIS without you present, even if your support person has power of attorney or guardianship.
Listed here are some places to go for further support. We have the NDIA themselves. Local area coordinators are partners of the NDIS in the community and can be very helpful in answering any questions you might have. The organisation that is providing service in your area will vary.
Advocacy groups can be a great source of support, even to the point of attending the first plan meeting with you in person. The Carer Gateway is a fantastic support. It is specifically for carers, not the person with disability. There is provision for supports like emergency respite and counselling.
At Dementia Australia, our website has a significant amount of information available, complete with a section which focuses on younger onset dementia. If there are any further questions, please call the National Dementia Helpline and you'll be connected with appropriate supports. Thank you for watching.
[Title card: Together we can reshape the impact of dementia]
[Title card: Dementia Australia. 1800 100 500. Dementia.org.au]
[END of recorded material]
More on younger onset dementia and the NDIS
- Younger onset dementia
A diagnosis of dementia when you’re under 65 is called younger onset dementia or early onset dementia. Explore information, advice and support tailored for you.
https://www.dementia.org.au/about-dementia/younger-onset-dementia - Living With Younger Onset Dementia Program
A program for people recently diagnosed with younger onset dementia, including information, advice and support.
https://www.dementia.org.au/get-involved/events/living-younger-onset-dementia-program - Understanding Younger Onset Dementia
These information sessions provide an introduction to younger onset dementia and the unique impacts of a diagnosis of dementia earlier in life.
https://www.dementia.org.au/get-involved/events/understanding-younger-onset-dementia - National Disability Insurance Scheme (NDIS) support
If you’ve been diagnosed with dementia and you’re under 65, you may be eligible for Australian government support through the National Disability Insurance Scheme (NDIS).
https://www.dementia.org.au/get-support/national-disability-insurance-scheme-ndis-support
The National Dementia Helpline
Free and confidential, the National Dementia Helpline, 1800 100 500, provides expert information, advice and support, 24 hours a day, seven days a week, 365 days a year. No issue too big, no question too small.