Joint Standing Committee on the National Disability Scheme

Reference: IT’S BECOME A PYRAMID SELLING STRUCTURE!!

This is the story of our brother’s demise under NDIS – neglect, exploitation and manipulation with no accountability.

We are lodging this as we believe the current system allows incompetence and negligence in the support programs implemented under the guidance of Co-Ordinators of Support (COS) and associated support workers. Our personal experience is that of a profound decline of our brother’s capacity to cope mentally, physically, socially and emotionally. Separation and exclusion of the family from support processes and decisions have disempowered both him and his family, even though the family has made numerous attempts to communicate with the COS and most recently provided her with very significant background information which we presumed was her responsibility to know when she pilfered our brother from another provider.

Prior to NDIS this family supported and managed our brother for 55 years. Our brother no longer trusts anyone, now experiences paranoia and delusions. Very recent documentation from his bariatric surgeon questions his longevity.

SUMMARY

The current NDIS program, and coordination services are not working to build capacity, in fact they have resulted in his physical, mental, emotional and social capacity deterioration.

In the last 18–24 months, under the coordination of COS B has deteriorated from:

• A person who could travel on public transport, alone to someone who is taxied around.
• A person who could cook various meals to someone, who has someone virtually cooking for him.
• A person who could do his own shopping, collect his medication, and take it, to someone who has supervised shopping, and supervised medicating.
• A person whose capacity to socialise in a number of community activities to someone who sits at home listening to the radio waiting for his support workers who he believes are his friends.

• A person who would get himself to church and bible studies, the club on a weekly basis to someone who is driven by a support worker to have coffee daily. He has lost these community contacts who really supported him, and potential friends.

• A person who attended family functions and accepted family support, to a person who is ambivalent about whether he will attend or not, because he perceives his privacy and secrecy about his NDIS support an indication of his independence, and he has to be loyal to his coordinator and support workers who are now his friends, even though they are transient paid support, who may not be there in the future.

Physical deterioration:

His Hiatus hernia is now at his knees with his organs compromised having progressed from a situation where medical intervention may have been successful to being no longer possible with a 50/50 chance of surviving. At this stage the doctor is not prepared to take such a risk. To leave the hernia means the organs will eventually fail. In the meantime mobility restricts his quality of life and he is often ostracised by community members. We believe this with poor management by NDIS, in addition to physical decline, has also contributed to the decline of mental health.

This is extremely concerning as over at least the last 3 to 4 years family consistently attempted to communicate with Co-ordinators of Support regarding these matters but were refused communication because of Consent and Choice.

 mentally and physically deteriorated to such a degree that he was threatening self harm

and family had to call in The Acute Mental Health Team who intervened with appropriate mental support and in conjunction with his GP set appropriate interventions.

When was under the care of his sister as NDIS Nominee was 30 plus kgs lighter, his hernia at normal height, substantially smaller and progressing towards being corrected successfully.

Family experience:

The NDIS support program has isolated from his family, friends and community.

The NDIS Co-ordinator of Support (COS B) impresses as not understanding disabilities, the importance of his connection with his family who have supported him for 50 plus years and lacks the competencies to develop an appropriate program that supports complex disabilities.

Although NDIS always talks about Privacy and Confidentiality the current COS hasn’t observed it when it has been to her advantage. More recently she distributed a confidential psychological assessment analyse of which were the main respondents, to people who did not need to know including support workers who had left. She did not have permission prior to doing this.

The current review plan is flimsy, with unrealistic and immeasurable goals. Anyone who really knew would have tried to guide him towards more realistic and measurable goals that address his disabilities.

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The family has an email trail supporting consistent efforts and requests to work with the NDIS COS’s to support but this is not and has not been forthcoming. This coordinator of support has taken control of medical appointments. When confronted regarding lack of medical care she stated it is not her brief. Although we requested to support him with medical appointments she continues to do so and only filters some information to family.

How has this happened?

The complex needs and circumstances of people with psychosocial disability are being processed and examined by NDIS staff with limited, sometimes no experience or professional background in this area. The current COS B proudly states prior to her 5 years in the Disability industry she was employed in the hospitality industry. During these 5 years she has completed her Diploma of Disability and managed to escalate her status from a support worker to a COS. At the time she pilfered a person with complex needs, from another provider she had only been working in the industry for 2.5 years. From what we have learnt most recently when she coerced our brother she did not investigate his background or needs.

Our family experience and evidence is that over a protracted period of time, the NDIS psychosocial support team and NDIS psychosocial pathway processes - simply do not exist. Various statements in public documents on the NDIS website, in the media and in public forums - regarding the improved psychosocial “pathway” - is utterly false. If there was any t ruth to the statement that there was an improved psychosocial pathway, then our brother would not be in his position today.

Choice, Consent and Privacy has been used for disempowering both client and his family through separation and exclusion, so that the COS has full control over the client’s life and family relationships.

No consideration is given to lived experiences and understanding (of nearly 55 years) from the family. This impresses as being deliberate as it gives full control of all decisions both financial and psychosocial made for the client by a person WHO MAY NOT HAVE THE NECESSARY EXPERIENCE. In doing so the only beneficiary is the COS and there is an obvious vested interest here, similar to Pyramid Selling - % of $156,000 per year!

This particular COS (COS B) was most excited when she realised there was an additional diagnosis she was unaware of (because she hadn’t bother to research brother’s history) that would give her more funding and indirectly more commission! All the family wanted was quality of support not quantity.

Why would a COS want the family involved especially one sister a registered psychologist, the other a registered Financial Adviser!! This week an email from the COS B stated Financial Guardianship is on the radar for her.

Our perception of changes required:

1. Quality of Support rather than quantity of support;

2. Enhanced training, up skilling both initially and annually of all support personnel engaged in services;

3. A professional standard and industry body that governs the education and supervision of all personnel and companies involved in supporting the Disability sector.

4. Mandatory review meetings involving all stakeholders and family where expert professionals explain the person’s disabilities and implications for the development of the appropriate support system.

5. All personnel working in the disability industry be required to complete mandatory annual development with a log required to be presented yearly to remain in the industry.

6. Accountability – independent checking and auditing of what Co-ordinators and support personnel are doing;

7. Transparency of funding allocation, commissions and referral fees by way of a register open to the public;

8. No decision making allowed regarding support for disabled personnel; e.g., placing them in shared or assisted living accommodation without consultation with immediate family;

9. Family should never be excluded especially when a disabled client is suffering from mental health and life is at risk.