Webinar: Younger Onset Dementia and the NDIS
Dementia Australia webinars are free videos where subject experts discuss topics relating to dementia for a general audience.
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 the age of 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: Younger Onset Dementia and the NDIS]
[Title card: Dementia Australia Logo]
Joshua: Hello and welcome to this presentation on Younger Onset Dementia and the NDIS. I'm recording this on of Worimi country and I would like to acknowledge traditional owners of this land and pay my respects to Elders, past and present and to our shared futures. My name is Josh. I work for Dementia Australia and I've been assisting people with the NDIS for several years in a range of different roles. I'm here to talk to you today regarding some useful tips that will hopefully simplify the process of applying to the NDIS, as I'm well aware of how daunting it can seem when you're first confronted with what you have to learn. During this webinar, we'll focus on 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 funding system after that date. You can stay on the NDIS regardless of your age. It is therefore crucial to begin the process well before this cut-off 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. In our experience supporting clients, a simple paragraph similar to the one on this slide is often 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 there is no cure.’ Lifelong impact from a disability is a requirement for access to be approved. An example of appropriate evidence of disability is displayed here. "Sandra has been a patient under my care for the past two years. She has been diagnosed with Alzheimer's type dementia. Her dementia is degenerative and has a significant impact on her daily functional capacity. There is no known curative treatment available."
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 GP. 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 points are very important. Once the diagnosis has been provided to the NDIS, they need more information regarding the impact dementia has on the categories displayed here.
We recommend gathering reports with minimal medical jargon. Aim to include simple language, describing the impact dementia has on being able to complete the following: 'Socialising'. Do you have difficulty in following conversations in large groups? Does this make you withdraw more frequently from these sorts of events? Has your friendship circle become smaller as a result of dementia symptoms and the anxiety that can follow? 'Communication.' Do you experience any word finding difficulties? 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? And 'Learning.' Do you have difficulty learning new skills, like catching a bus to a new place, or learning a new recipe? Or ‘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, 'Self-Management.' Do you have difficulty organising a weekly schedule? Paying bills or making decisions about tasks you are confronted with throughout the day?
The progression of gaining full access to the NDIS is a four-step process. Firstly, the independent collating of evidence outlining the diagnosis and functional impact. Secondly, the initial meeting with a local area coordinator in a community connection meeting. Local area coordinators are partners or contractors with the NDIS. Organisations providing this service vary depending on your region. They will go through the submitted evidence and ask for some decisional questions. They will then compose this into a document to be submitted to the NDIS for approval. There will be a focus on any goals you have that the NDIS can assist you to achieve. We will discuss this in more depth further into the presentation. Thirdly, if the submitted evidence is considered satisfactory, a planning meeting to discuss potential supports and hours required, will be scheduled with the local area coordinator. This is drafted and sent to a NDIS planner for approval and then finally, a funded plan is approved for use. "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 related 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 a previous sporting injury. And, it must not include day-to-day living costs unrelated to your dementia support needs, such as groceries. For example, they may fund for a support worker to assist you to do the shopping, but not for the cost of 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 recommend phrasing it similarly 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 coffee with a friend, then John is also getting a break as a result of Sandra being supported.
So, what might the NDIS fund? 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, assistance 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 alarmed 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 approved once a thorough assessment of the most appropriate supports has taken place. This is to ensure that any safety risk is minimised and 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, where 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 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 effort on your behalf. Additionally, this option may minimise the stress placed on you, particularly in the first year of a plan. When you are learning how the scheme operates in practice, 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 receive less funding in another area. "Specialist Disability Accommodation" is funding for residential housing. It is the actual bricks and mortar component, not the human support worker hours. This funding can be requested to cover the cost of a building that someone lives in. "Supported Independent Living" refers to the personalised daily supports one will receive while accessing special 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 significant support needs 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 base. 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 as 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 community connection meeting, it is always advisable to keep independence and safety at the forefront of your mind. These are some questions you might want to think about when the process begins. When thinking of safety risks in the home, some may include out-of-date food from the fridge, double dosing on medication, stairs, bathrooms where there may be an increased risk of a fall, or getting lost in public places. When discussing independence, place a high degree of value on activities that are important for you to continue participating in, but you might have difficulty with, such as playing 18 holes of golf for a few times a week; doing the grocery shopping or travelling to visit family. An example of a common goal would be "Sandra would like to remain as independent and as safe 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 know dementia symptoms can fluctuate, day-to-day, week to week. It is important that we answer all questions during meetings 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. 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, 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. Put down instead what you enjoy or miss doing on the weekend, community groups that you're involved with, and a bit about who supports you either emotionally or physically.
The final point on this slide is very important. If you have a support person, whether this 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 they have 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 in the NDIS in the community, and they can be very helpful in answering any questions you might have. The organisation that is providing services in your area varies from region to region. Advocacy groups can be a great source of support, even to the point of attending a 'first plan' meeting with you in person. The Carer Gateway is a fantastic support. It is specifically for carers, not for people with a disability. There is provision for supports, such as emergency respite and counselling. Dementia Australia, our website has a significant amount of information available complete with a section which focuses on younger onset dementia. We also provide a number of different educational programs, specifically targeted people with younger onset dementia. If there are any further questions, please call the National Dementia Helpline on 1800 100 500 and you'll be connected with appropriate supports. Thank you for watching.
[Title card: No matter how you are impacted by dementia, or who you are, we are here for you]
[Title card: Dementia Australia Logo National Dementia Helpline. 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 - Family engagement counselling for younger onset dementia
Dementia Australia’s free counselling service for families where someone lives with younger onset dementia.
https://www.dementia.org.au/get-support/family-engagement-counselling-younger-onset-dementia
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.