SUBMISSION:

My name is , I am 72, I live in Western Australia, and I am retired. I also have Multiple Sclerosis and other auto immune diseases, and I rely on the NDIS for various supports, which I would not be able to obtain if I was to pay my own way, and without which I would not be able to have any quality of life.

I believe the NDIS is an amazing support which provides so many people with opportunities to gain therapeutic support as well as many of the household, living and quality of life supports that they would not otherwise have access to. It has been a blessing to many including myself.

The new NDIS Bill takes away a lot of the care and dignity that participants have a right to; it removes references to the United Nations disability rights principles which centred on personalised support, choice and independence. It now focuses mainly on the financial aspect of the Australian Budget and does not consider the philosophy of the original scheme and has changed the original priorities. It is now a numbers game.

In addition, a new eligibility test will be introduced changing the focus from a medical diagnosis to functional capacity, and that capacity will be assessed without reference to the persons environment or personal circumstance. This makes no sense. The lifestyle and environment, and whether the person lives alone would have direct consequence on how a person can function. This new eligibility test also assumes that treatment is accessible and affordable which is not the case for many participants. Many are pensioners who cannot access treatments because they are too expensive, or too far away for them to attend.

Automation of assessment takes away any opportunity for a meaningful discussion around the persons diagnosis, their needs and goals and their ability to have a say I n what happens. Surely this is a backward step in caring for people with disabilities

I do not support the Bill in its current format and give my reasons next to the key points of the Bill as set out in (https://www.aph.gov.au/Parliamentary_Business/Bills_Legislation/bd/bd2526/26bd065#hea ding_848531c868b64fc69b974349d0f6e92c)

• The Bill is primarily aimed at reducing projected growth in NDIS expenditure and participant numbers, while strengthening fraud controls, provider regulation and governance arrangements. On the surface this sounds like a fair statement, but it does not take into account our aging population. Many people (such as myself) are diagnosed later in life, having put up with a variety of debilitating symptoms

• and hospitalisations before getting an actual diagnosis (I was diagnosed with MS at 63). I realise that I may get help through the Aged Care System, but they only provide supports to age related issues and not MS related issues.  In relation to our younger generations, there are many with ADHD etc who because of increased knowledge in the medical system have received a diagnosis… some after many years waiting. Surely, they should not be penalised for that? They will still need help, possibly into their teen years or beyond, so cutting their numbers will only put added burden on the Health system which is also in trouble.

  The Bill will make several significant amendments to the operation of the NDIS, including:)

      o  introducing a power for the Minister to reduce funding for specified groups of
           supports. When is it ever a good idea to introduce special powers for
          Ministers especially when it’s in the reduction of funding to specified
         groups? Surely if a group is not performing properly, there should be
         checks and balances in place that would notify of this early enough for
          organisations to go through a specific process to have their funding
           questioned/lessened. This makes it a procedural matter and not one that
         needs ministerial input.
  
      o  amending access and planning arrangements, including by defining functional
            capacity, limiting participant-requested plan reassessments, expanding the
          circumstances in which a person’s plan can be suspended, strengthening the
             link between supports and eligible impairments, changing reasonable and
          necessary support provisions, and allowing consideration of access to other
            service systems. The underlined above are all punitive measures to clients
        and I don’t understand why this is so. The clients aren’t necessarily the
         ones making mistakes, and if they are why hasn’t it been picked up
         through normal processes? The above takes away the recognition of the
            client knowing what they need, their right to question the result of an
          assessment, especially if it’s to be automated, and expanding the
          circumstances in which a person’s plan can be suspended is just a further
            client blaming tactic as are the remaining points in this paragraph. This
          point definitely needs reworking!
      o  strengthening fraud, compliance and regulatory arrangements, including by
          changing the definition of NDIS provider, introducing civil penalties,
          expanding information-gathering powers, imposing record-keeping
           requirements, changing claims timeframes and amending plan management
          arrangements. On the surface, this seems adequate, but any new
  

provisions would need to be clearly enunciated for them to be understood

and adhered to by individual providers, organisational providers, also by clients who self-manage. Consultation with all stake holders here is vital as it will not proceed without a majority understanding and endorsement. Remembering always that Disabled people should not have to prove their worthiness for support.

• establishing a Ministerial pricing mechanism for NDIS supports and permitting automated administrative decision-making within the NDIS A ministerial pricing mechanism for all NDIS supports is a good idea, although I thought this was happening now? An automative decision making process is DEFINITELY NOT a good idea. There have been too many mistakes with automative processes in other areas and any extra mistakes in NDIS would not be taken kindly. In addition, it flies against the United Nations disability rights principles which centred on personalised support, choice and independence

• facilitating implementation of new framework planning arrangements and providing for transitional arrangements. On the whole this is a good idea but it must be worked through in a consultative manner ensuring that Clients, and organisations have their say and remembering, that Disabled people should not have to prove their worthiness for support

This is such a complex and complicated Bill that I find myself questioning everything. Many of its points are made in a punitive manner towards clients as if it’s their fault that numbers have blown out, and I personally believe that that is how this project has been undertaken… “It’s the Clients fault”. But it’s not! Yes, clients will try it on, to get what they need, but there should be clear processes in place that let them know what they can and cannot claim, and this must be consistently accounted for across all areas of the NDIS.

The main point in this scenario, I believe, is that not enough staff have been employed to oversee this program in all its complexities. Clients must always be able have their say in what they need, but all their complexities must also be accounted for. That may mean a bigger or more well-trained workforce at NDIS, but it does not mean clients should be punished for asking for what they need.

I appreciate your reading my submission and would be happy to further expand these points if that’s something you would like .

Yours sincerely