The following outline of events in addition to the supporting documentation provided is intended for consideration by the Joint Standing Committee on the NDIS. My name is Shannon Manning and I, in addition to my 2 children, are participants in the NDIS.
For context, I will provide information on my children and their medical conditions.
Child 1:
Diagnoses: 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12.
Child 2:
DIagnoses: 1. 2. 3. 4. 5. 6. 7. 8.
In addition to my children’s conditions, I have recently been diagnosed with, and have received the first of multiple surgeries for, a lifelong degenerative illness: Complex Regional Pain Syndrome (CPRS). I underwent surgery in April 2019 and am indefinitely unable to lift any weight greater than five kgs. Medical evidence pertaining to this lifelong, permanent disability and functional impairment has been provided to the NDIA.
Per documentation provided by my GP and OT, my disability is the result of having insufficient supports in place to manage my children’s disabilities – specifically from lifting wheel chair in and out of vehicles and lifting herself, after the NDIA refused to approve funding for either a lighter wheel chair or a vehicle hoist. and the wheel chair both weighs approx. 45 kgs, and given that I am currently unable to lift anything over
5kgs, caring for my children represents a risk to both my physical wellbeing and that of my children. Under legislation, the NDIA must take my caregiving capacity and risks to my family’s health and wellbeing into account when determining my children’s levels of funded supports (s3.4(a) of the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth) and NDIS Operational Guideline 8.4).
In a recent review of progress toward goals and future planning for my son, I provided the assigned case worker, of Uniting Care ECEI, with assessments and reports from Paediatrician, OT, Speech and Language Pathologist, GP, health specialists from Lady Cilento, Wesley and Westmead Hospitals, and practitioners from the Centre for Disability Studies, University of Sydney. Individually and collectively, these reports outlined functional impairments, resultant support requirements, my own diminished capacity as care-giver, and the substantial risks that underfunding would have on my family. Despite this evidence, the ECEI and NDIA determined that receive only two hours of support each week. In doing so, I submit that the NDIA has not met its obligations under s3.4 of the Rules. The impact of this is that care and support needs are unable to be met.
I have now had to lodge a review. As part of the review process, the ECEI planner, , explained that the ECEI Uniting Care policy is that every child who has a sibling with a disability receives core funding for two hours of support per week, irrespective of the level of disabilities or support required in the home. I believe that this blanket policy to give children a fixed and pre-determined amount of funding, regardless of assessed need, contravenes the Objects of the Act.
In addition to my son’s complex care needs, my daughter has been assessed as requiring 24/7 2:1 care. Again, the NDIA has ignored the significant clinical documentation provided to it, and has instead elected to fund only six hours of support per day. This is
unsustainable – I am expected to provide the residual support for (while also
supporting ) despite my own functional limitations. displays significantly
challenging and complex behaviour, including severe self-harming behaviours. As she continues to grow and as my own condition continues to deteriorate, I will be unable to provide adequate support to her. My fear is that will be unable to remain living in the family home unless urgent and immediate supports are provided by the NDIA.
Sadly, I am aware of many other families who have been treated as I have by the NDIA, LACs and ECEI. Anecdotally, I am aware of funding limitations and ‘caps’ being determined based on a diagnosis – especially ASD level 2. This seems alarmingly similar to the aforementioned policy implemented by Uniting Care, and indicates that Scheme budgetary matters are more important than resultant funding to meet assessed need.
While I am aware of ongoing critique of the Act, my belief is that it is not the legislation which is problematic, but rather the implementation/ operationalisation of it. The NDIS has the opportunity to be life-changing and impactful for all families who have a child with a disability, not just a select few. To achieve this, a consistent application of the legislation is required.