Getting access to the NDIS can be a hard hurdle to jump in itself, but then when approved, as exciting as that can be, new challenges can arise.
When going into your pre-planning, its best to really work on setting your goals and keeping them broad. Your goals can depend on what supports are available to you. You may set a goal like, ‘I want to be safe and independent when at home and out in the community’. That can get you access to support for cleaning, gardening, meal preparation, hair washing and personal care, a support worker can assist you to participate in the community etc.
I guess it really depends on the level of care you need which your OT will help determine what supports you may require. Your OT may also recommend assisted technology, whether that be kitchen aids, mobility equipment, electric bedding or lifting recliner chairs. Some low cost assisted technology can be claimed under your consumables budget, while other higher risk items may need a support letter from your OT or other Allied Health Professional. You can find out more about that here
There is a helpful NDIS booklet that is a good tool for you to work on leading up to your first plan or plan review. You can access that booklet here
You have to really think about planning and answering questions as if it was your worst day, because those are the days where we will probably need a lot more support and assistance. I mean, nothing is guaranteed with MS is it! ….There is no cure. As good as the many treatments that are available, doesn’t guarantee that we will be symptom free or that we won’t have progression.
Once approved and getting access to your plan, you will need to find supports and services. You have choice and control of what service providers you use. Being agency managed gives you less choice because you can only use NDIS registered providers. Plan managed you can use any provider as long as they have an registered ABN, and pricing guide is set by the NDIS. Meaning, the providers hourly rate amount cannot exceed what the NDIS price guide has set out, and that amount includes GST. Participants that are self managed still need to use providers with a registered ABN, but are not limited to the NDIS pricing guide, they can pay any amount. But, with that, you need to keep an eye on your funding because although you can negotiate pricing with providers, you can also chew through you funding quickly if you are not careful.
Plan and self managed can usually use their core funding flexibly which means you get to have that little bit more control over your needs specially when it comes to assistance with daily living. What that means for us MS’ers is, we can get help to do the things we were once able to do.
There are plenty of grey areas, but I think as long as you can justify your needs and that prices are reasonable then there shouldn’t be too much of an issue.
As an example, ….I can’t wash my car anymore because of muscle weakness, balance and dexterity issues in my hands. Some will say to hire a support worker to do it for you, others will say its an everyday expense, but I think it is reasonable and necessary to go through a car wash to have it cleaned. Or, possibly book a mobile car cleaner to wash inside and out because they are qualified and are insured, opposed to a support work who may not be. It really is hard to get proper assistance sometimes and the solutions aren’t always a one size fits all kind of thing.
For anyone with MS, I would highly recommend requesting a support coordinator to help you navigate it all. There are many companies to choose from, including MS Plus. They have full understanding about MS and some of the challenges we may face. It is so much easier not having to explain yourself over and over again. That alone can be draining.
It can be really hard to get consistent advice as everyone has a different set of views. LAC’s (local area coordinator), Support Coordinator, Plan Managers and the NDIS themselves seem to sometimes give different answers to any questions you may have. Can be very frustrating for participants. At times, you really have to learn to advocate and fight for yourself.
I hope this blog has been of some help.
I’m very grateful for the NDIS and everyone that has helped me through my MS journey so far. There is an awesome Facebook group that I have found particularly awesome for learning and sharing NDIS tips. If you have MS and are an NDIS approved participant and would like to join, you can find the Facebook group here
Cover photo from Fauxels