Terms of reference

capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment

b. the impacts of NDIA capability and culture on the experiences of people with disability and NDIS participants trying to access information, support and services from the Agency; and

c. any other relevant matters.

Background

Our 28-year-old son has been a participant in the National Disability Insurance Scheme (NDIS) for the past 7 years He is a young man with complex mental health conditions and various disabilities. His diagnosis are Schizophrenia, Generalise Anxiety disorder, Panic attacks, Autism, Global Intellectual Disability, Hyperacusis & ADHD.

Our son has required 24/7 care since he was born and went through school either in an Autism unit or in a special school. At school he required and was funded for a full-time aide to assist him all through his school life. In fact, he started preschool in what was then called a Tech 8 room and was specifically for children with high support needs. Our son from a very young age had very challenging behaviours and found it difficult to be around to many people at one time.

He experienced very turbulent years as a teenager which is when the schizophrenia began. He was at times unable to leave the family home, unable to go to school and later work, threatening to harm himself and others and regularly calling the police, sometimes multiple times a day because he was worried what he might harm someone he cared about. He spent many nights at the secure mental health unit within the local hospital at times being involuntarily committed.

Fast forward to now and our son is living in his own 2-bedroom government house and has been there since 2020 with 24/7 funded support. He has held a part time job for over 3 years, again with 1:1 support, very rarely calls the police and his Schizophrenia whilst still present is much more under control. He even (at detriment to his own health) increased his work week to full time at the height of the Covid epidemic because he wanted to do his best to keep everyone safe (it was his role to walk around the school he works and sanitize all door handles and smooth surfaces to try and prevent the spread of Covid).

The NDIS

Dealings with the NDIS over the past 5 years has been extremely stressful.

For the first 2 years the NDIS was a blessing and our son received the appropriate amount of funding and we had planners who spoke with the allied health professionals in his life. This has not been the case in the past 5 years. We have had to continuously battle with NDIA planners who do not understand our sons’ complex needs. This has led to countless reviews, reviews of reviewable decisions and the Administrative Appeals Tribunal.

In our son’s current NDIS plan he has only been partially funded for the supports he requires. We have always provided reports from the Allied health professionals involved in our son’s life along with his treating Psychiatrist all who have stated clearly in their reports that our son requires intensive support, at a ratio of 1:1 care 24/7 for at least the next few years while he learns and builds his independent living skills.

Because our son is a fighter who never gives in, he has overcome terrifying moments and continues to improve but it is slow and for every two step forwards there is a step back and often these step backs are caused by incompetent NDIS planners. They have never even met our son and they take little to no notice of medical professionals, Psychiatrists and Allied health professionals reports (often discarding them completely), they never contact the doctors or psychiatrists, Allied health professionals, etc to discuss questions they may have and very rarely communicate at all with our family despite repeated requests.

In this latest plan the planner insisted on expensive behaviour support practitioners because of a perceived restrictive practice around our sons medication, this is even after his treating psychiatrist wrote stating the medication was for the treatment of a mental health condition which under legislation is not deemed as a restrictive practice, they ignored this letter and then proceeded to remove all funding for the Allied health professionals that have working with our son for years and have successfully been helping to improve his life. These planners also think that our son should need less funding for supports now than he did 5 years ago and because this isn’t the case, they see him as a failure. They do not look at how far he has come and how much better his life is now, they do not listen to the experts who all say a few more years of solid support and he will reach a level of independence where supports can continually reduce but certainly not by 50% in 6 months which is what the current plan is funded. When we questioned the level of funding being reduced and pointed out that it was actually impossible to even do in our sons two-bedroom dwelling, that is having 2 clients to 1 support worker overnight, we were told and I quote ‘that gives you 6 months to find him different accommodation then’. Our son was on a waiting list for 10 years for his government house and there is no way he should be expected to give up where he lives because untrained NDIS planners say so.

These planners are not formally trained but take it upon themselves to disregard reports from professionals who are trained and offer no justification for any of the decisions to reduce the funding which goes against the advice in all the reports submitted.

In fact, even after only three weeks of the new behaviour support practitioners our son was made to see they wrote a letter to the NDIS planner stating our son required the

• continuation of 1:1 24/7 support and not to provide the funding for this would not only be

detrimental but unsafe, see attachment A. They further stated that there was no restrictive practice with our sons medication and couldn’t understand why they had become involved especially after his treating psychiatrist and stated in writing what the medication was for.

To try and resolve these issues and make the whole process less stressful for us we wrote to the ACT State Manager asking how we could access the NDIA Complex planning team, a planning team within the NDIS that looks after complex cases/diagnoses which our son certainly fits. We were advised that the only course of action we could take was to submit a formal complaint because participants are not allowed to request access to the complex planning team. We then submitted a complaint outlining the discussion with the State Manager and got a reply saying that our sons support coordinator could send in a referral to the complex team. No indication was given as to where to send the referral to, so we contacted them again and were told the complaint had been closed. Our sons Case Coordinator tried to contact the NDIA via a web chat to see where to send the referral to and was told that only our sons NDIS planner could make a referral to the complex team. The coordinator immediately contacted the current planner who did not even know there was a NDIS complex team and suggested we contact the general NDIS number to enquire how to we might get in touch.

It is clear employees of the NDIA do not even know what their own processes are. They constantly came back with no that’s not how you do it or you’re not allowed to do it or you need to do this, but no suggestions how to do it and what the actual process is to access the complex team.

It has been very stressful dealing with the NDIA over the past 5 years and has caused us many sleepless nights and in fact in our sons last NDIS plan we had to provide over 500 hours of care in 6 months because our sons funding again was insufficient and went against all submitted reports so consequently, we had to go through the AAT to address the matter and while the case was at the AAT we had to provide the support until the plan was eventually topped up to restore the 1:1 24/7 care..

Recommendations

More training is required for NDIS planners. It is insulting not only to NDIS participants but also to families that untrained NDIS planners can make decisions without justification that go against trained allied health professionals recommendations. In most cases the NDIS planner do not even read the reports submitted and have no knowledge of the participant before a planning meeting happens.

It should be mandated that an NDIS planner should only be a scribe and not someone with the power to revoke or disregard recommendations from those that work with participants. They should be mandated to read submitted reports and have an understanding of participants before a planning meeting commences. They should be contacting allied health professionals and asking questions if they don’t understand the need for particular funding or how particular disabilities affect the person in there everyday life.

NDIS planners should also be aware of other avenues available for complex participants for instance how to access the complex planning team. A policy/procedure needs to be

Capability and Culture of the NDIA

Page | 4

Developed that clearly states how and when access to the complex planning team takes place. Updates and new processes should be shared with all NDIA employees so the same information is provided to participants no matter how they contact the NDIA.

Participants and families should not have to tell their story every single year to a new planner from the NDIA.