Severe spinal disease and autistic son’s concerns about Independent Assessments

Submission to the Joint Standing Committee on the NDis “Independent Assessments”

Thank you for agreeing to allow my late submission. I have been deliberately not following the progress of the NDIS, as it is too stressful, so I did not realise that you were even considering this issue.

I have a severe, incurable, degenerative spinal disease, and my son is autistic. Our family also includes my husband, and my other child.

I am opposed to the proposals for Independent Assessments for the following reasons:

1. I truly resent the intrusion into my life, and my son’s life. We were promised that the NDIS would focus on our abilities, not our disabilities, and yet we will be answering personal questions put to us by a total stranger, and we will know that focussing on positives will not help us to maintain our funding. I want to talk about what we need to help us continue to achieve our goals, to live full lives in our family and community, as the scheme intended. Not tell a stranger how I struggle to wipe my own bottom sometimes. It is degrading, and I thought we had moved way beyond that.

2. I fear the process will mean that funding is based on a snapshot of functional ability, made by a person who cannot have a breadth of experience with that individual. In my case this would probably be wholly inaccurate because my support is very proactive/preventative.

3. This is moving back to the State model of support assessment that was so broken. My severe degenerative spinal disease was initially rejected for support by our State disability system on the basis of my functionality. However, my rheumatologist told me that I needed help around the house, and to ask again. It turned out that my disease was listed as one of the conditions that our State disability system automatically provided support for – it was objectively considered to be so debilitating that they did not need to functionally assess me. The original MoU with state government gave assurances that there would be no disadvantage to moving from state support to the NDIS, so why am I now going to be reassessed?

4. Functional assessments do not accurately assess all disabilities. I know that on a functional assessment I would hardly appear to have any impairment. Taken as individual tasks, yes I can wash my hair, make a meal, get dressed etc. However if I do all these things day after day, or even all of them for one day, I get very tired and my disease flares to an extent where I can do nothing. For example last time I cleaned the oven, I could do little apart from sit in a chair and basic self care for the next two days. I am very functional, solely because I have plenty of support with the activities that I know tire me out. I can also suddenly be incapacitated, unable to get up from a chair or walk, but this is very sporadic and is unlikely to be seen by an assessor.

How on earth will a functional assessment, by someone who will not understand the complexities of my disease, by someone who only sees me on one day, allow a fair and reasonable assessment of the preventative support that I need to be able to function? Surely I have proven enough – it is a degenerative, incurable disease and my specialist and Physio have consistently confirmed the hugely positive impact of the support that I receive. But yes, I can feed myself, drive a car and make a meal, so all those boxes will be ticked.

5. We were promised at the beginning of the NDIS that the Planners would be allied health professionals with sufficient experience and knowledge to assess our needs. It proved to be impossible to recruit enough people fitting that description. Is this not just pushing that function onto another group of people, knowing that there will still not be enough suitably experienced staff? It is not an infinite pool of people, and most of them who are able will already be working in therapy roles, and will not want the job. It seems inevitable that we will get new graduates, or people who are not good enough to get more lucrative roles. It is utterly unrealistic to plan on these assessments being done by qualified people, yet they will lack any possible credibility if they are not.

6. I am very concerned that the process will not be honest and transparent. NDIA ordered an Independent Assessment of my son to determine his in home support needs. We agreed,

Independent Assessments

Submission 345

The condition that NDIA agreed to abide by the assessor’s recommendations. We had written confirmation of this agreement. NDIA chose the assessor; she came and did a very skilled and comprehensive OT assessment and recommended a substantial number of hours per week of funded support. When we got his Plan, NDIA had funded under one tenth of the recommended level of support. Several years later the assessor saw me in a shop and approached me.

She asked if I realised that she was never paid for her assessment. She said that NDIA asked her to change her report and reduce her recommendation; she had refused, and they refused to pay her. She got fed up with chasing them and arguing about it so she gave up.

So I am terrified of having my funding levels tied to an independent assessment. Even if it is done by someone very knowledgeable in the area of disability, even if the assessment is totally optimal, I do not trust that it will be used fairly.

7. Seventhly, if the result is unfair or inaccurate, I know that the review process is extremely lengthy. How on earth will we manage for a lengthy period with reduced support, if we have to appeal?

8. Lastly, as I understand it, this now gives me four things to worry about: how long have I got until the assessment, the assessment itself, the review with the LAC, and getting the draft plan. Before I only had to meet my LAC who had met me every year and had a good understanding of my needs. It has made the process significantly more stressful and complex for Participants.

So I am currently faced with both our plans being rolled over pending independent assessments at some future date. You probably have no idea what it is like to be waiting, every day, for a phone call email or letter which you know will put your entire family’s wellbeing in jeopardy.