I am a Parent, Grandparent & I have been a Carer for 26 years. I support & understand changes need to be made for the long term sustainability of the NDIS however, I strongly do not support this proposed NDIS Bill in its current form. I will do my best to outline below some of the reasons why I request amendments be made to this proposed Bill.
As a Carer I am facing burn out & am exhausted with the focus on anticipated NDIS changes which will impact negatively many of the most vulnerable in our community.
In particular the proposed changes in this Bill will potentially be life threatening for my Grandson, who for privacy & document purposes here I will call “E “.”
“E “lives with his Dad ( our son ) who has been a sole parent & Primary Carer ( assisted with my husband & myself as Support Carers ) for almost all of Ë’s “26 years of life.
“E “has the following multiple complex disabilities –
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Septo Optic Dysplasia – from Birth . This disability impacts vision, cognition /mid line brain abnormalities, physical -gross & fine motor abilities, sensory processing, psycho social abilities , endocrine deficits , growth hormone & metabolism – A complex care regime is required with this disability daily & lifelong.
- Legally Blind - from Birth including Optic Nerve Hypoplasia & Nystagmus
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Acquired Brain Injury from a stroke in early childhood These are all disabilities which are permanent – lifelong.
This proposed Bill narrows looking at a “whole person “approach. Section 34 1 ( aa ) for participants like “E “whose disabilities cross physical, cognitive, sensory, psycho social areas, there needs to be amendment to make consideration for inclusion of multiple disabilities . Amend 34 A so there are no “unsafe gaps “ for participants like “E “with complex, high support needs & multiple disabilities.
I do not support the Bill section around capping any support S 33 ( 2EA )
Section 34 A I believe needs to amend to consultation with the participant & their impact statement before reduction of funds to their social & community participation. If this were to be legislated the impact from this would be severely detrimental for “E “. This funding is not discretionary or purely recreational for “E “ it is essential supervision to keep him safe .
The flow on from these proposed cuts would mean- serious risks for “E”being unable to be left alone at home or in the community. My son would be unable to work full time in community health ( a loss impacting “E “& the wider community) This would further impact their life quality being unable to afford independent housing /rent. They then would require housing support. This would flow on to mental & physical impacts due to isolation & disconnection.
I believe that there should be a hold off on the starting of S 9B test until there has been consultation, piloting, designing & testing of the Functional Assessment tool & this should be transparent Public Information.
I believe amendment needs to be made to 48 ( A ) Unscheduled reassessment Cut the 90 day proposal & retain the 21 day decision time frame. Life with disabilities is not static nor predictable . In its current proposed form there is no Emergency reassessment pathway placing “E “at risk if he faces the real prospect of collapsed support arrangements , escalated needs or crisis situation.
Amend the proposal to revoke or suspend your plan without you knowing. SS 40 A, 30 ( 1 A ) There is no clear definition of the phrase ‘reasonable attempts ‘ This would impact “E “having an ABI & being blind. It makes no allowances for unintended consequences of a missed call. My son is “E ‘s “listed NDIA person to contact – he works full time , cannot always.take personal calls working in the public health system( the NDIA calls are from an unlisted number & messages not usually left )
25 A ( 2 ) ‘you must try all appropriate treatment ‘needs to be removed or greater clarification. There is no inclusion for access barriers around disability, individual circumstances, waiting lists , treatment costs. I believe this is a discriminatory proposal.
There will be further difficulties for “E “around a very unclear purchasing decision making & pricing document. There is potential for”E”to carry a debt from a purchase which may have been made in good faith even being approved or agreed to by his Plan Manager or Support Coordinator, which could then be later disapproved by NDIA. This proposed system is confusing, will cause fear & requires much greater clarity & elaboration.
Section 50 A ( 2 ) b needs to be adjusted so that one off funding carries over until that quoted item is actioned.
There are more amendments that I believe should be made to this proposed Bill that I am fearful will gravely impact “E “& many of the most vulnerable in our communities but for now I am truly weary. Alongside being a Carer , advocating for my Grandson & navigating the maze of Disability for the past 26 years, I am also doing my best to navigate care for my 89
year old Mum. Dad passed away in January & now my Mother is dealing with Grief , living alone without any in home Aged Care Support .
This proposed Bill also for me, raises deep concerns about the limits of a child’s right to a full & decent life. I believe it fails to put the best interests of the child first, directly undermining Australia’s commitments under the United Nations Convention on the Rights of the Child.
I don’t believe this proposed Bill secures the NDIS for future generations, but taking away these supports puts an unsustainable burden on Carers & families It is a backward step for inclusion, will potentially be the tipping point for break down of many families currently caring for loved ones, just like our Family. The ripple effect will be felt in weakening community connection, mental & physical breakdowns of many, adding significant burden to our health & policing systems.
It fails our most vulnerable in the worst of ways.
Thank you for the time reading & considering my submission. These are my views & my concerns, from first hand lived experiences of the last 26 years in the world of disability. Excuse any mistakes – I am not an expert but have done my best in my words to convey what amendments I believe need to be made.
I urge the Senate Committee to please review carefully what the consequences & impacts will be with this proposed changes to people who have a disability & their families.
Yours sincerely,