How the NDIS has helped me.

Hi all thanks for you responses to my post on who is the NDIS really working for and this is a conversation that needs to go much deeper than it has been due to the fact that we see that people need to be able to understand a key concept being what is a disability. So in this, there are several definitions of disability but generally the UN one is more internationally accepted and it is what we see that the NDIS is based around so this is a general impairment or physical deficit or health condition that requires support and assistance through aid or other devices to live life and to have a meaningful life.

The NDIS definition is based of this but the fact that it is a legal definition has to be able to have clear limits of what people would qualify for and who is helped by other services or what they call informal supports, so this being family and friends. [i] We see that there are several lists of what qualifies as a disability in the NDIS terms and there is 3 lists list A is generally what was in the past an automatic acceptance for support. However, I do believe now that you do have to apply and people and parents who could use the support aren’t applying due to the fact that they have to spend thousands to prove that their child or charge is disabled, every plan change.

Then there are conditions that you need to prove your disability and its functional impact on your life as well such as the conditions that are in list B and C. I know that this has been a massive issue and has brought about what some health professionals have called the gentrification of disability as they have people who are actively seeking out a diagnosis to be able to get onto the NDIS and they come from a well of background so are able to get the best reports done and I don’t deny the support that comes from having a diagnosis but we are seeing that this then leads to people who need support but don’t know how to access it not accessing the needed support.

We also see that there is a fundamental misunderstanding of what a support worker does and sometimes from the support worker themselves, and this can lead to further criticism of the scheme we see that the news cycle is more concerned about our defence capabilities or the online world is up in arms about a spokesperson for a type of beer. [ii]

As there are actually some disabilities that aren’t on the NDIS and we see that this is a massive issue and we are seeing a lot of online noise about, what people think are political issues and I am talking about the online space here, about what is making noise online and it seems to be a bit too “difficult” for those who identify as a cultural activist to the disabled community and work with us as they are so used to us being told what we get and to not get upset, and being able to tell us what is good for us and to believe the service providers when they say that the person is being challenging despite not having any history of these types of the behaviours before.

This could be a provider making life easier for themselves in the way that we see that some providers around pre-NDIS were better equipped to respond to difficult and challenging behaviours.

Those who weren’t around pre-NDIS were generally not equipped well and those who didn’t understand what the NDIS calls a psychosocial disability didn’t really understand what that meant and the behaviours that came with it. This being conditions like Autism, or an intellectual disability, or a Brain injury. As there can be a rigid adherence to routines, a re-telling of stories that may have been told several times or a person not understanding appropriate behaviours in public leading to potential embarrassment from the client and support worker when they understand what is wrong with the behaviour.

I have found that it has been the pre-NDIS providers that have a deep understanding of the NDIS and the new providers that have personal experience though having a family with disabilities have been best equipped to provide for me and not isolate me from my family as yes I have had support workers wanting to isolate me from my family and told me when I was living in the family home that I didn’t need to ask permission I just needed to tell them what I was doing and I didn’t understand why I was then causing a lot of conflicts now my team is in contact with my family constantly and this is where we need to understand the complexity of NDIS planning as it’s not as simple as hearing is a plan go and use it there is the application, then if you are even eligible or not then we have. If you had funded.

It was generally through state government funding or charity services and to have a support worker meant that you were very high complex needs and the family needed support to keep you in the family home or you where very high needs you might be placed in a home run by a support organization and these where called group homes and at times where very institutional and not a great place to be.

However, we need to remember that not everything is on the NDIS and that some disabilities aren’t covered it is more about the “functional impact” on the person’s life, so if they need help with what the NDIS calls activities of daily living we see that this would attract the help of a support worker or organization, to help you day to day to employ someone on this level.

But if it has no impact but the person qualifies but has a physical disability but a person can be independent we see that this person might be able to use items such as a wheelchair or other mobility aids such as a walker or they might choose to get a cleaner in to do heavy physical cleaning that a person can’t do and that we see others might be able to do themselves.

[i] List A: Conditions that are likely to meet the disability requirements | NDIS Disability (who.int) [ii]