Submission for the inquiry into the Capability and Culture of the National Disability Insurance Agency
by the Senate Joint Standing Committee, specifically noting experiences of trying to access information, support and services from the National Disability Insurance Agency.
To whom it may concern,
My name is I live in South Australia. My partner has a diagnosis of level 3 Autism Spectrum Disorder and my 2 daughter both have a diagnosis of level 2 Autism Spectrum Disorder and have access to NDIS plans. All the plans are Plan Managed.
Problems with the NDIS that I have personally experienced:
e Incompetent LAC’s That do not understand what Autism is, how it affects them on a daily basis, what their needs are or what supports and services are common for Autistic people to access - even though their disability has not changed since the last time you spoke to them.
e Who do not call up to organize the plan review and wait for you to call them.
e Who are unsupportive of the services you want to use or are currently using. They tell you that you should not ask for funding for a particular therapy because it’s expensive and it’s likely that NDIS won’t want to pay for it so don’t bother.
e Who tell you not to go to the tribunal because it’s not worth it and it takes forever and it’s so hard and difficult even though it is my right to do so AND almost every case at the tribunal is won by the client/carer and often entitled to MORE than they have asked for.
e Who do not respond to any emails unless it is relevant to an immediate plan review.
e LAC’s being out of state being available at very different times than you are. LAC’s should be in your state at the minimum, preferably within a half hour drive from your suburb so they have local knowledge about your state/area.
e LAC’s refusing to make small changes to NDIS plans because it is not an official plan review.
Problems with Funding
Service costs double or triple as soon as you say you have NDIS funding available so the minimal funding you are given is now even less so it never lasts or is enough.
I provide reports, invoices, costing and assessments and do a lot of preparation ahead of a plan review to get the appropriate amount of funding for my children and partner. Then I am given a quarter of what is needed. I put in so much work with service providers and am ignored at every plan review by NDIS. It is extremely depressing and disheartening. I have proven why the specific amount of money is needed and what it will be used for, just put that money into the plan and stop making it so difficult.
Not allowing people to buy things cheaper on overseas websites so people can stretch their NDIS dollars further. Some items just do not exist here, are very difficult to find or are exorbitantly priced.
Not allowing people to buy items they want because they have been deemed unsafe or hazardous because a person needs to be supervised while using them. If an adult on NDIS or a parent with a child on NDIS has researched and wants to purchase an item and is understood what the concerns/risks are AND STILL WANTS TO PURCHASE IT then it should be their decision because they have now made an educated decision.
If an adult on NDIS or a parent with a child on NDIS has researched and wants to try a new/different style of therapy and understands what the concerns/risks are AND STILL WANTS TO TRY IT then it should be their decision because they have now made an educated decision. NDIS decide that 80% of support services are not beneficial because they don’t understand what allied health professionals do and this impedes the ability of people with a disability to seek and access appropriate support.
Instead of an item costing $10 it now costs $160 because the words “we love NDIS” are on the website and it’s in Australia. The price gouging is insane and out of control.
Being discouraged to go to the tribunal by saying it is very difficult and overwhelming so I’m better off just spending what I have – which I now know is because most tribunals end up with the complainant getting The funding they asked for OR MORE.
Having to give a week’s notice to cancel a session otherwise we are still charged the exorbitant amount of a full session, which is not practical or fair to a client, BUT the service provider can cancel whenever they like with as little notice as they like with no consequence to them.
Being charged for a full term of therapy sessions after only being able to attend 2. This is also not practical or fair.
NDIS not knowing what allied health professionals do - they told me they don’t fund Developmental Educators because they are education so the school has to pay for them.. I do not have the energy to explain in detail but this is so completely wrong. Developmental Educators do not help with education.
There is no way anyone can explain this logic to me:
0-6 years – lots of funding because it’s ‘early intervention’ 7-16 years – very minimal funding because everything is classed as ‘parental responsibility’ 16 years and over – no longer parental responsibility so lots of funding again
The 5 years after a diagnosis should be considered early intervention no matter what age it has occurred. Therapies and different supports need to be researched and explored in that time and extra funding is needed while an individual works out exactly what supports are right for them.
NDIS not helping with anything to do with school/education. My kids are there from 8:30 to 3pm most of the year. It’s where they need the most help because all their difficulties are confronted there. And the public schools are so grossly underfunded that there is never any help available from them either.
NDIS not helping fund supports for people with lifelong learning disorders. They do not go away outside of school or after school is finished and impact people significantly in so many different ways.