I wish to address the following Terms of Reference for the Joint Standing Committee on the NDIS – Mental Health
1 a) the eligibility criteria for the NDIS for people with psychosocial disability;
b) the transition to the NDIS of all current long term and short term mental health Commonwealth government funded services, including the Personal Helpers and Mentor services (PHaMS) and Partners in Recover (PIR) programs and in particular;
i) whether these services will continue to be provided for people deemed ineligible for the NDIS. I will make the following 3 key points:
1 My experience with the process of determining eligibility for NDIS
My GP, Dr Lupisan completed her part of my Access Request Form and indicated I would require support in all of the six areas of my life - Mobility, Communication, Learning, Self Management, Self Care and Social Interaction.
When I was notified that my application had been rejected, I felt devastated. I had been deemed ineligible for two reasons, which were outlined in a letter to me.
The letter refers to Section 24 (1) (e) – Disability and specifically states that I must be likely to require support under the NDIS for my lifetime. I understand that my life will continue to be affected by my mental health, but I still hold hope for my recovery. It is hard for me to read that I need be labelled as disabled for life in order to receive support.
The second part of the letter refers to Section 25 – Early Intervention. This part of the letter contains someone else’s name (Sylvanna), so I thought maybe the letter wasn’t even meant for me. This didn’t seem to be about me at all.
After my phone conversation with the NDIA in January 2017, I was told that this section is only for people aged six years and under! But there is no indication on the Access Request Form to tell me this.
I have enclosed a copy of this letter with my submission.
My PHAMS worker supported me to make phone calls to the NDIS to discuss this letter. On two different occasions we spoke to NDIA staff named Heath, Marty and eventually Jessica in the NDIA Access section. Jessica was the person who made the decision to reject my application.
I told them that since I had applied for NDIS, I have received a diagnosis of Parkinson’s disease. This news was greeted with “Great!”
I’m sure that the man, Marty, didn’t mean it the way it sounded, but it was hard to hear my diagnosis and worsening condition being referred to in this way. I guess he meant that it would add weight to my application. He told me the author of the letter had believed that my needs would best be met under a State Government Mental Health plan of 10 visits to a psychologist, although that is not suggested in the rejection letter.
2 My experience with the eligibility criteria for NDIS
It was explained to me by Jessica, that the NDIA would require more evidence that all treatment options had been explored and had failed before the NDIA would step in. That was apparently the reason she rejected my application. She did suggest I “just find the money” for an OT assessment.
My GP, Dr , indicated on the Access Request Form that other treatments would not remedy my impairment. That question is:
Is there any other treatment that is likely to remedy the impairment? And my doctor indicated NO.
The Access Request Form gives the applicant two options:
1 they can chose to provide copies of reports, letters, assessments OR 2 by asking a professional to complete the form.
It seems like they will require both to determine eligibility. If that’s the case, then the form should state that.
Given the information on my Access Request Form for my mental health needs alone, I would have thought I would qualify for support under the NDIS. I understand this is called psycho-social disability.
I am very distressed about this whole process and the focus being put on my disability and how I need to have this for life in order to receive support. This is severely impacting on my mental health. I am more anxious than ever and I worry about my future. I can’t cope with addressing anything about my Parkinson’s disease until I know what is going to happen with my NDIS application.
In regard to the Parkinson’s, I am just beginning on this journey and I don’t know yet how this will affect me. Despite this, I continue to try to work towards my recovery, but I couldn’t do this without supports.
3 My concerns for the future of PHaMS program
I worry that I won’t be able to continue to receive service from the PHaMs program if I am ineligible for support under NDIS. The application process has been disempowering and very negative experience. I hope that my story will help other people too.
Possible solutions
1 Training for NDIS staff
NDIA staff need to be specifically trained to support them in dealing with people with mental health issues. It would be helpful for them to be trained to be aware and recognise that people with mental illness could become distressed when dealing with such a complicated process such as this.
Ordinary everyday activities can be overwhelming for someone with a mental illness. Previous dealings with government departments may have been demeaning and this will colour their interactions with the NDIA. Sensitivity is very important to someone who is anxious and feels their supports are under threat. Particularly important is the language used when discussing someone’s disability. Comments, like ‘great you’ve got Parkinson’s’, should just never have been made.
2 Changes to the Access Request Form
a) The requirements to provide evidence must be made clearer on the Access Request Form. If the NDIA requires people to provide documents as well as get the health professional to fill in their part, then it should state that is what is needed. It disempowers me further when I am given a choice and then penalised for making a choice, when the consequences were not made clear to me.
b) Also the Section for Early Intervention, needs to be marked as only for children under six years of age.
3 Continue to fund PHaMs programs
If eligibility for phsychosocial support is too difficult to determine, then keep the programs like PHaMS fully funded to keep doing the work they do so well.
PHaMS support meets my needs because it is individual to me. They are flexible, friendly and consistently support me to reach my goals.
My support keeps me out of hospital, encourages me to leave the house and to eat. It provides me with opportunities to interact with other people in a safe environment. Most importantly, my worker never gives up on me.