CEO Update - Guest blog by ACT carer representative Janet Milford

Mental Health Australia CEO Frank Quinlan is currently on leave and has invited colleagues to provide a guest blog each week. These blogs are the views of each guest blogger and not the opinions of Mental Health Australia.

This week’s guest blog comes from Janet Milford, the ACT carer representative on the National Mental Health Consumer and Carer Forum.


What’s happening to our NDIS?

Mental Health Australia CEO Frank Quinlan is currently on leave and has invited colleagues to provide a guest blog each week. These blogs are the views of each guest blogger and not the opinions of Mental Health Australia.

This week’s guest blog comes from Janet Milford, the ACT carer representative on the National Mental Health Consumer and Carer Forum.

What’s happening to our NDIS?
As a carer of someone with a psychosocial disability, I have been a strong advocate for the inclusion of people with a psychosocial disability in NDIS and for their complex needs to be understood by the National Disability Insurance Agency (NDIA).

Our son’s initial NDIS package has made a positive difference in his life and ours.  He has never had so much ongoing relevant support. Being considered a “success story” I became involved in promoting the NDIS, presenting and advising in many forums. 

When his first annual plan review was due, we all prepared for the interview and attended with some trepidation. We were quietly confident current services and supports would continue, and were hopeful additional requests would be granted. 

It was then an immense shock, and very distressing, when we received the new plan. The funding was less than a quarter of the original plan. How were we going to pay for current services and support, let alone any new ones? In addition, and somewhat absurdly, the NDIA had granted a plan manager to employ other services. My advocacy work was now a very cruel ironic joke.
    
The consequences of this were terrifying - the new plan’s inadequacies were potentially life threatening for our son. Was this now a human rights issue?

The process highlighted to us that the NDIA seem to have very little understanding of psychosocial disability. What damage were they inflicting on people with psychosocial disability and their carers and families? Giving them funding, hope and a better quality of life one year and then taking it away the next. Reinforcing what has continually happened to them in the past. 

After an urgent plan review and ongoing negotiations, we clawed back a lot of the funding to produce a viable package to continue with current support services, along with a plan manager to manage the plan. This was not completely satisfactory, but at least an improvement, and I hate to think how people without the support of carers would navigate this process.

So with that in mind, and to help other consumers and carers, here’s what we learnt about the planner and process; 

  • The planner was not trained properly, 
  • They had no mental health background and little understanding of psychosocial disability,
  • They asked compulsory questions related to physical disability, and
  • They didn’t read the records, and didn’t review the last plan to see what had worked.

In addition, there was a mistake made with manual input and we deduced that a different assessment tool was being used from when we did the original plan, and that NDIA were manually entering data into a computer generated assessment tool to produce the plan. The NDIA do not disclose what assessment tool they used. 

We also discovered from the second planner that unspent funding is used as a base line for a new plan, resulting in punishment for not using all funding. The planners did not ask us why all funding was not used, but this was reassessed when we provided the reasons. This is worrying as NDIA states that participants are not to be penalized for not using funding and there are many reasons why people do not use up funding, especially in a first plan, in the first year of a new scheme. 

Additionally, ‘reasonable and necessary’ does not allow for more innovative solutions outside of what is set down by the NDIA as ‘reasonable and necessary’ i.e. there must be research proving the benefits outweigh economic outlay, which provides no scope for a reasonable and necessary support for the individual such as a companion/therapy/mind dog. 

While the final plan did recognize our specialized psychosocial support workers, we asked in writing for clarification on why the NDIA do not pay for the higher quality Peer Support/Recovery focused service at the appropriate level i.e. “life transition planning, mentoring, peer support and individual skill development” (Price guide Reference 09_006_0106_6_3)?  

The line item the NDIA reference as “Capacity Building”, developing individual skills and providing training (15_037_0117_1_3) is paid at less than Core supports. 

This is very concerning and hard for us to understand that NDIA do not consider these workers as ‘reasonable and necessary’. It is also very short-sighted. We have not received a response.  

Finally, in future we will employ a planner who is an expert in the NDIA processes, language and terminology, to prepare and attend the interview for the next plan. 

To help us all going forward, we have to ask that if these practices continue to undermine the whole concept of NDIS, is the NDIA in danger of becoming just another Centrelink?

Janet Milford
ACT carer representative
National Mental Health Consumer and Carer Forum

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