Senate Inquiry into Capability and Culture of the NDIA

To the Honorable Members of Parliament, Please see below information pertaining to my Submission for the Senate Inquiry into the Capability and Culture of the NDIA.

Terms of Reference for Senate Inquiry into Capability and Culture of the NDIA

a. The capability and culture of the NDIA with reference to operational processes and procedures and nature of staff employment

The staff employed who hold the reviews have very limited understanding of disability needs. They also have very limited time to read through reports, and when they do read the reports, they do not appear to understand the diagnostic terms from Allied Health Professionals.

| have had to say to Allied Health Professionals “Please write your reports for a person who has no tertiary, disability, or human rights education or understanding.” But these are the people making life changing funding decisions??? Why??

Examples of really bad capabilities of the NDIA, that | have heard as a Support Coordinator while supporting people and/or their families in the review process.

• Told to “bank” social and community participation supports, which means to not use them, so that the person could have a 24-hour support for 3 days on a supported holiday. This beautiful person is in their 60’s has the cognitive ability

Senate Inquiry into Capability and Culture of the NDIA

• Of about a 3-year-old, unstable seizures and major behavioral concerns brought on by unstable neurological activity. Yeah – they were where to stop their paid supports and bank them so they could enjoy the ordinary activity of having a holiday where they required 24 hour supports.
• Was told in a review meeting by an NDIS delegate that the person could walk, as the Core Provider had written that the NDIS participant “enjoyed walks on the beach.” I had to reference the OT reports stating their diagnosis, they still went back to the Core Provider Report, and I had to again explain that they do this in a modified beach wheelchair, and it is a language term we use; we do not generally say “we are going for a roll on the beach.” They still went back to the Core Providers report and again stated that they walk (mum and dad were right there on the Teams meeting – they have had full time care of their adult child who is a fulltime wheelchair user), I then had to get my Mum face and my Mum voice on and explained in minute detail what the persons diagnosis means and how they are not able to do any of their Activities of Daily living. The poor family were very upset that it took this to get through to the Delegate.
• Was told in a review meeting that we did not have a DSMV to support the persons intellectual disability/ ABI needs – at no point was this ever mentioned prior to the meeting. The NDIS participant had Intellectual Disabilities listed in their Diagnosis, and as this was their 3rd NDIS Plan, we did not think we needed it, but because there was no mention of this, we did not get one. It temporarily stopped the review, and we were then able to supply documentation later.
• For another NDIS participant in the middle of the review for a person who has an elderly family member who is the guardian, we were told: 1) There was no Nominee paperwork’s on the file; and 2) Again there was no DSMV documentation. The elderly family member started to cry, and I asked to stop the review, but the NDIS delegate bluntly stated that “THEY” were facilitating the review meeting. I very bluntly stated back in a very loud voice (teleconference) that we were stopping. I was then able to explain to the elderly family member that I understood what the Delegate was saying and after the meeting I could help her to fix this situation up. (The elderly family member had been holding out for the review due to the complex nature of it all and is quite scared of people in authority).
• (We were told by this Delegate that they would send out the Nominee forms, but never did!) We were also able mid-review have the BSP practitioner reference DSMV in the Assessment of Need and have this immediately fixed up.

Senate Inquiry into Capability and Culture of the NDIA

• Repeatedly attempted to work with the NDIS to inform them that a Participant was about to run out of Core Funding in the next 2 – 4 months. - which we needed to use quicker (with Permission) to mitigate risks to the NDIS participant. With the family we submitted Change of Circumstances, Request for Review and all Plan Review Documents. The 2 – 4 months passed, and they then run out of money. We then had to get their Local Federal Member Involved to contact the NDIS. We then had had the review, where we had previously submitted the SC Report, OT Reports with Transition plan, Neurologists letter, and other supporting evidence – but none of this was taken into consideration in the review. None. We have just had to hold ANOTHER review for the same participant, with added extra information. – just so they get the supports they need to keep them safe and do not die from their disability related needs.

• As an SC, I have now had to go to the length of adding in references in my Plan Review Reports to the NDIS’s own web site for: High Support Care Needs; how multiple medical supports also require High Support needs; references to the NDIS & NDIS Commission Code of Conduct and also NDIS Commission Practice/ Provider Alerts – just so people get the support they need for their disabilities. WHY have I had to do this when they already have this information???

• Surely if they have this information, my role as an SC is not point out their own material to them, as to why someone needs High Support Needs, and is at risk of injuries, worsening of their disability needs and of Death?

Senate Inquiry into Capability and Culture of the NDIA

Culture of the NDIS — they have become bullies. Many of the Nominee’s/ guardians work with have had phone calls from the NDIS regarding review meetings stating that they (the NDIS and Nominee) can do the Review without the Support Coordinator. Often the delegate ringing keeps asking this question. Thankfully all people and their families are aware they allowed to state “No, they are having the persons NDIS Support Coordinator there for the review meeting.”

Senate Inquiry into Capability and Culture of the NDIA

Examples of this are

• People with Dysphagia related needs are not funded for their staff to attend the taining needed to prevent choking/ prevent death and are often not funded for he correct ratio of supports for their recommended Mealtime Management Plans.

(the family and or participant as well as the core provider to ensure that all risks are documented.)

The other area of capability which is of major concern to me is the vast discrepancies between what the NDIS Quality and Safeguards Commission deem as part of “safe” supports for a person and the very limited funding the NDIS give to people.

people with unstable epilepsy who require Midazolam and Oxygen available in their home, are not funded for their providers to attend training on this, are not funded for 1:1, though they need this (to prevent death), it also prevents accidents or death of 2™ participant.

People with BSP/ PBSP/ C-BSP who are managed through the NDIS Commission for this, are not funded under the NDIS as per the Behavioral Practitioners (& OT and Specialists), recommendations for 1:1 supports, not funded for their staff to attend training.

| have found many Core Providers are or at risk of - breaking the NDIS Code of Conduct, purely through lack of funding from the NDIS, in being unable to fully provide supports with appropriately trained staff, have safe environments (which includes ratio of staff), and provide supports in a way that mitigate risks (including risks of death).

c. Any other matters

The person with the NDIS plan or their Nominee are supposed to get a copy of why the NDIA made their decision, this is often not case. Or if it they do, they do not reference the full length of documents provided.