Submission

Dear Committee,,

Thank you for the opportuniity to share my thoughts on the, NDIS review.

My adult child has been a partic1ipant on the NDIS Scheme since trial days. I am my clh1ild’s Nominee of the, NDIS Pllan and constant carer. support. advocate and wornied parent about the, f:uture implications of the proposed changes in draft ND IS Le,gislation, and the, impact upon peoplle’s Human Rights and fiuture lives under the NDIS.

I write this subm1ission from my own personal experience and the detrimental! consequences I feell will occur, shoulld h1is go ahead.

Begist1ration of an p,,oyide’rs

We have already liv,ed through the impact of losing unregistered long term support work,ers via an ,error of jucJg,ement of Planner.. The Planner wrongly interpr,eted the BSP Plan information around restrictiv:e practices, and subsequ,ently. incorrectly revoked self-managem,ent without notice, placing all Cor,e support under NDIA Managem.ent. The impact of this decision was profound..

My child now has an additional disability from the impact of additional anxiety, suffering of stress and trauma during that time, and now r,equires additional support and medication. Although the error was rectified within months, supports were lost. Sourcing support for a profound, complex and complicated person was and still is extrem,ely limited. We w,e,:e without support for around 18 months.

I cannot explain the devastation of telling my child, the trusted supports were no longer supporting. Unable to explain to my child, because of the disabilittes at ha’nd, it made the already incredibly cruel situation ev:en more so. Traumatic for myself also.

In understanding how the consequences of loss of supports can damage people long term, I can therefor,e proc,ess the impact of this draft legislation and understand it will cause in detriment.

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It is in this decision makin:g, and in making all providers r,egistered, my child will most certainly be isolated from the community, without supports and vulnerable. My own sustainability to continue caring, poor. The tier,ed approach, will not include the small tim,e supports who support my child so carefully and dutifully. For my child, we will be required to use the big guys. The unpersonalis,ed support-the g.et who you are given model, when they can model. The large r:egister,ed provid,er model, whereby, we are sold the idea our loved ones ar,e safer, when the opposit,e from our ,experience is true. As far as complaining to a large Provider, in our experience,. you ‘II be m.et with experienced gaslighting and further trauma and suffering. AH our supports will be lost. After building up trusted support aga·in, support will all b,e gone. My child will have no one. We do not want to use larg,e registered Providers who we do not trust. This would be a human rights c,omplaint against the Agency for isolation of a person with dis.abilities“’ This occurred during the last episode of revoking se,lf management and leaving my child with no supports . .My child was in isolation. My child expresses the fact that large providers are, not wanted by her as she has not bee·n safe, under their care. She has a right to ,choose he,r supports not be dictated to by ,G·overnment.

Another issu,e comes to light from only having Registered Providers. This involves the r:easonable and n.ecessary needs required for the person to survive day to day and function, and the ability to purchase.

One such example, com,es from an AAT decision r.elating to my child for low cost AT, hubba bubba chewing gum. This low cost AT is completely vital to my child’s daily function, yet more than likely has not been ev,en remotelyconsider.ed by the NDIS R.eview Board. I purchase hubba bubba in bulk, such is the essential need we cannot run out and must have on hand. The gum r,eduoes self harm and harm to others, and minimises clenching when my child has flashbacksltrauma·tic memories calling dysr.egulation or dysregulation from disabilities such as autism. Without this product, I believe my child will be in hospitalised such is the risk of harm, b.ehaviours will ,exacerbate ,enormously. This is part of my child’s BSP, and is a known preventative strategy and ,essential. As I cannot afford anything mor,e financia/J’y on a car:ers pension. I would raise as a comp·laint to Human Rights as it will be causing considerab·le harm .and damage to my ,child. Furthermore, there is a severe risk to my health and future to support

• Other examples include;

• I ha,ve provided ma,ny activiti,es for my adult daughter such as crafts, as sh,e has no school no work and is unable at this tlm,e to attend day programs without my support as w,e still have a, serious la’ck of support workers. Profoundly disa·bled, having been chronically isolated from community and abused throughout schooling, my child ha’S an inability to pa,rticipate In day options, a’t least at this point in time for longer than an hour. Until the capacity builds to this level wher,eby attendance ca’n occur with regulatory, my child must be provided with cognitive supportive activities to ensur:e capa·city builds a,nd trust building between my child and support staff continues. However, this is completely una,ccepta’ble for the government to continue to pr,essure the unpaid carers who provide informal support to pick up the ,extra ,expenses. These a~e disa’bility related expenses and costs. I ha,ve constantly provided care a,nd support for my da·ughter throughout her lite, and been una,ble to work beca,use of the lack of support. It is a, complete disregard to caters who love their children, for the government to throw them out to the wolves a,nd the oat,ers with it, by a,JJowing us to pick up the ta·b when we are on the bar,e minimum to survive.

Weighted Blanket.

A proven ,example of ne,ed is the w,e/ght:ed blanket and one used by my child throughout periods of need, during day a,nd night for regulation purposes. Cannot live without this item. This is used a’S part of the BSP, effectively used for ~ears to improve wellbeing a-nd functioning, a,nd to help regulate. I would raise a .Human Rights Complaint if n,o longer ab.,·e t-·o pu_richase Veai NDIS-__ _ as t·h_ IS• ;s- an esse, -.· nt·_ 1a_• I necr;.u-“ an d_my· c hild____ , would deteri,or.ate wi,th,out.

Recliner chair

Funded R&N via AAT Essenti“al for my child to self’ regu ate,. Without the recliner, my body was use,d instead for calming purposes by my adult child. My clhild bejng lar,ger and stronger than myse·lf, it became more and more dif icult t,o maintain my own bodies physical health. I stiill have bad back, shoulders and neck pain from daiily ,co-regulating my child.

• has provid d a source o inde,pendi:mce to re,gulate, wlhen 1in

• dysre,gu latiion .

• ln .. home hai1rdre·ssing for ha1ir washing

Funded IR&N via AAT. My adult chiild ,do s not have the capability to s ay re,gulated w·thin a salon e·nvir,onment. Doe,s 1not have, the capacity to wash own hair due •,o disablilitie·s ..A lo1ng e·lim trus ed support. irireplaceabl,e. damage by the A,gency if denied Another Hum,an Ri,ghts co1mplaint.

• A ·f,ormer AAT decis·on wlh1ich 1is re·le·van, as these·have, 1not be·en considered by the re•v1iew committee, espeda.lly due to the· la,ck of support for autism within hiis re,v1ew 1is surro ndiing pharmaceu 1ical compound1ing. My ch1ld’s psychiatnist at the· ti’me prescribed a me·di1catio111 that only came 1in tab et form witlhin Aus ral1ia. At the rme·, my ch “Id ieou d 1not swallow tablets, related t,o, seve,re· anxiety de·r1ived from Au ism. Tlhis was won at AAT, the H&NI need to c,ompound the med1ic·ne, after much hard lbattle a,ga1ns the .Agency and wastage of 1Govemment mo1ney o close down legitiimate· nee·ds of a y,oung ,g1irl, and a mother who, cannot affor,d extra e pe·1nses, 01n a care,r payment

My child being pro,foundly disabled and having suffered from abuse, canno,1 undergo assessments even with our own Allied He·alt!h Team. The triggIe1ring of th·s will cause Iha.rm to my child. This is alre·ady evidle1nc ,d lby way of anotlhe Allied H al1h professional who, attempted to do this previously, but aborted after in e·xtremely short period, citing she·found it une,tihical 10 proceed with asse,ssing due to harm. The re·su It o,f the atte·mptedl assessment was self harm and harm 10 myself 1·or weeks and a damaged relationship be, weeIn my child and All’ ed Health pro,fessional of trust.

The draft legislation proposes a stranger would enter into our ho,mes and assess fo1r funding Ipurpo,ses. My ch“ldl sim1ply cannot do, this task witho,ut fear and without further traumatisation. The draft has no asse·ssment too,I as yet raising se11ious questio1ns about how ethical this process will lbe and how th Assessment pIrocess will work.

Specialist Support Coordination and Support Coordhiatio

Without a SSC it will be, imposs’’ble to naviga1e, tihe nature, of bureaucracy of the ND,IIA and associated processes of dealing with multiple suppo,rts, while consta1ntly caring. I do not believe the ~navigator role is ·n 1he be·st interes s of my chHdl and we will be left again high and dry witihout support. We must be able to have, a person who, unders1ands our situatio1n.

Failure, to ecogn·se, informal support/s andl the fallout from poorly thought out di aft leg1islation

As a imother who, cares and suppoirts my adult child 24/7/365, it ’s stagger’ng1to, think that the gIovernment wou Id want Imore lbarrie:rs pre,venting the acce,ss to disability supports which are essen ial of daily life, functionirng a1nd to live. Without these, curren1 existi1n - supports, my clhildl will no, longer ace . ss co,mmunity, no,r have supports. 11cannot fatlhorm the, fu ure because it would be 0Ine of seLlharm and harm 10, othe,rs, dleteriora1ion of all face,ts of wellbeing fo,r my child.

The gove nme,nt as always has not co,nsidle ed the consequences o,f informal supports which will be catastrophic should there be an increase of care,r burnout and no, suppo,rts That would be a lbillio:n dollar disaster no one has considered if info 1mal supports were, longe • able to care.

Wlhe e ‘s the so called co, design’? The NDIS Re,view has bee,n developed and ,dropped, town hall mee,tings have, bee,n conducted as a way of propaganda atlher than discussing 1he issues witlh peop e who, are, quite rightly extreme,ly conce,rined albou1 themselve,s, family 1memlbers and others in the co,mmunity. With the lack of human ri’ghts, lack of trans,pare,ncy andl rnot taki1ng p -oples lives and all disabil’tie“s into consideration as a wlho,le, we sho,uld be worr edl. Concerning is the desire of Go,vernme1nt to change the L gislation away from what we, know ·,s Heasonable, and Necessa1ry without aIny co

• deségn or oonsu tation with people who have disabilities or family members. advocates o,r other.

• The draft Legislation demonstrates a fundamental lack of respect fair people who have disabilities wuth egardl towards •heir privacy. Instead. the Go,vernment’s control over individuals diminishes PwD to act as any other persons in society without having to forcibly reveal their d’sabil’ty to purchase goods or suppoirts. The Government setting up providers for peo,ple to purchase, will eliminate, purchasing needs o,f vital service,s, wirthout of which could cause damage. harm and hospitalisation. It is neglect of the most vulnerable individuals lby the Government who, should be servirng their best interests as c’tizens.

• Finally. witltio,ut the supports albove, (although not all listed)i I am of the firm view. imy daugh er who, currently is without a restr’ctive practice and learning to regulate and understand herself, will be again forced to have restr1ictive p actices ·n place. This willll most. definiit,ely be .a human ri1ghts vi1ollat1iion as, it i1s enlir,ely· pr,eventable by the Governm,ent. The, Governments answer is placing further hardships of financial burden back upon the very peop,le who need it most.

• In my opinion, the draft leg’slation has a deliberate dliscriminato1ry flavour towards Aufst’c and psychosocial people. which again should lbe considered a hu1man nghts i1ssue.