Submission 2387
To the Community Affairs Committee,
I am a disabled person and advocate, who has lived experience of a rare neuromuscular condition for the past 15 years. I have been an NDIS participant for 8 years, as have three of my siblings (one of which was recently removed from the NDIS).
Before NDIS support I was largely housebound. Only able to access my community or attend appointments when my primary carer (mum) was available - who was also caring for three other children with disabilities. I had very limited resources to attend physical therapies (due to a low income) which resulted in muscle atrophy, progression of my condition and increased pain.
NDIS support has changed all of our lives, dramatically increased our independence, safety, quality of life, functional capacity and opportunities to work, volunteer and connect with our local and wider community. Equipment provided through NDIS has supported me to leave my home (safely and for longer - eg. wheelchair & slide board), sit and sleep safety when my muscles are weak and paralysed. I’ve also been able to utilise and implement other equipment recommended by my allied health team.
My overall view of this bill
I understand that changes and adjustments need to be made for the scheme to be sustainable, however I have serious concerns about the current proposed bill and its impacts on myself, my mum as primary caregiver, my siblings, friendships and the disability community I am a part of and advocate for.
My main concerns are:
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The definition of permanent disability - As someone with a rare disease, I understand that often research is ongoing and there is funding for treatments worldwide, which are often very expensive and inaccessible to the general community. I have significant issue with the proposed changes of ‘no appropriate treatments available that could remedy the disability’, as this may change over the course of a lifetime, as could access financially and geographically. A person’s functional capacity may also shift over a lifetime with or without treatment.
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Loss or reduction of supports (including community participation)- I am concerned that the ministerial power to cut entire support categories, without consideration of individual circumstances, could leave many participants (including myself) vulnerable, in unsafe and isolated environments. As someone who relies on a support person any/all times I leave the house due to my disability - which causes full body ‘locked in’ paralysis for upto 3hrs , experienced hundreds of times- at these times I can’t communicate or move, have decreased breathing capacity and am extremely vulnerable.
The decreased community participation funding largely restricts my employment opportunities and ability to stay engaged with my community, including; maintaining friendships, developing my independence away from my primary informal carer and attending vital medical and allied health appointments.
The significant reduction in self care and daily activity funding, already implemented in my latest plan reassessment limits my independence and places significant strain on my aging primary carer,
Submission 2387
with her own significant mobility and health challenges and therefore on our health and mental health system.
The complete elimination of certain therapies in my most recent plan and funding cuts, impacts my ability to implement suggested assistive technology and consumables, recommended by my allied health team. This is also a pattern of concern more broadly for participants. This personally impacts my work, communication, mobility and disability more broadly.
Short Term Respite automatically adjusted to 1:4 ratio; without opportunity for qualified expertise to assess this ratio need, despite multiple professional reports stating this is not appropriate for me. If used 1:1, this equates to max 5 days per year respite (as someone with a full-time primary carer), as in my experience, automatically only weekday rates are budgeted.
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Eligibility or assessment changes - as someone with a rare disease disability, with a capacity that fluctuates (due to the inherent nature of my disability) I am concerned that proposed changes to assessments would not take into account my individual circumstances and needs. My current plan is for several years and my support needs and informal support system structure is likely to change in that period of time. I am concerned about the ‘standardised assessment tool’ that is suggested to be utilised would not adequately assess fluctuating capacity and rare disabilities - of which I have both.
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Crisis situations / “not contactable” rules - The proposed change to allow plans to be suspended if a participant is considered ‘not contactable’ are very concerning personally, to my family and wider community. Due to my disability I have hours, quite often, where I am completely ‘locked in’ due to paralysis and would be deemed ‘not contactable’, which would also be the case whilst attending various appointments regularly. I have also experienced previous homelessness and been hospitalised. These are situations one cannot often predict or control, in which one is extremely vulnerable without support. Contacting participants in various forms eg. email, phone, letter or my gov letter (with more than a days notice) would be very beneficial - as not all mediums are accessible to people. The proposed limit of unscheduled plan reassessments is concerning, as these are the only options in a an unforeseen change of circumstance to change the level of supports needed, this is vital in crisis situations such as loss of informal supports, decline in functional capacity, change in employment or housing.
What I want the committee to understand
These proposed changes would leave participants like myself and my siblings, more vulnerable, with less options/autonomy and choice, increased isolation, place further strain on exhausted informal supports and decrease employment options/capacity. It would cause likely regression in progress gained through therapies due to lack of funding and continuity, for me specifically this includes muscle atrophy, pain and less mobility.
I understand that some state or community services may be able to meet the needs of some people with a disability for some supports, however in my experience many of these were removed prior/at the beginning of NDIS (in my family’s experience we’ve waited unto 2 years for services) or have been inappropriate/inadequate for my needs, so for this to actually be viable more infrastructure
Submission 2387
needs to be available before removing supports from disabled people. This is likely to put strain on already overwhelmed healthcare systems.
For example, Medicare rebatable chronic care plan visits for allied health can be very beneficial. However 5 visits is inadequate for my disability and support needs, as with many in the disability community. For people like myself, who require multiple specialised allied health professionals (who understand the specific condition) in a care team, this might equate to 1-2 appointment for each professional, annually. If the chronic care plan was increased to 10-12 (or 4-5 per allied health speciality) appointments per year - much like the mental health care plan - whilst minimising the medicare rebate/gap (and if possible with mental health care plan); this would be very beneficial to many in the disability community.
As someone with a rare disease disability, there is a lack of flexibility and nuance in this proposed bill necessary to meet our individual support needs. I am concerned about NDIS staff making life altering decisions about the capacity and needs of different disabilities which can be complex and layered; not having adequate knowledge, life experience and qualifications.
My position on this bill
I am strongly against this bill in its current form. I encourage further consultation with lived experience disabled, allied health and medical consultants, with adequate time for community feedback and definitions to be well-establish and defined.