Submission to the ACT Legislative Committee Inquiry into the Implementation, Performance and Governance of the
National Disability Insurance Scheme in the ACT
By
Dr Vanessa Fanning
Individual
My submission concerns my personal experience of having been excluded fromthe NDIS when it was rolled out in the ACT due to the failure of the transitionarrangements between the ACT Government Disability Agency and the NDIA andthe rigid application of an administrative technicality. Specifically, although I wasan existing client of the Community Services Directorate and Disability ACT, thatAgency failed to provide my details to the NDIS and failed to advise me that Ineeded to submit a new application for the NDIS. I received no communicationfrom any ACT agency at this critical time.I was diagnosed with Multiple Sclerosis, a neuro-degenerative disease in 1998. Ihave suffered from a significant, permanent and worsening mobility disabilitysince 2010. I am unable to walk without bilateral support. I also suffer fromother disabilities caused by the progressive nature of this disease.I have detailed my experience with the transition to the NDIS in the ACT atAttachment A.I have also attached copies of correspondence that I received from the thenMinister for Disability in the ACT, Chris Bourke, MLA at Attachment B.On 24 February 2017 the NDIA issued a statement in response to criticism of thetransition“The NDIA arrangementsis committed tostatingworkingthatwith: people with disability, their families and carers to resolve any issues during this period of transition.”
notMy experience clearly demonstrates that the NDIA is willing to work withpeople with disability to resolve any issues during this period of transition. Thereality was the opposite. Similarly while my representations to the ACTGovernment were met with sympathy, there was no recognition of the ACTGovernment’s failure to provide me or the NDIA with the necessary informationas per the Transition Arrangements, nor to intervene in what was a very unfairand arbitrary decision by the NDIA, nor to provide me with comparable support.My •experience demonstrates that : There was a failure of communication between the ACT administration • and the NDIS at the time of the launch of the NDIS in the ACT, which resulted in my being excluded from the NDIS through no fault of my own. The ACT administration issued no communication whatsoever to at least some of its existing disabled clients who were already in receipt of ACT Government disability support regarding their likely eligibility for the NDIS and the procedure required to be followed. (I suggest one could • safely assume that I am not the only victim of this failure of communication.) • The eligibility criteria specified on the ACT NDIS Internet portal on 7 January 2016 were incorrect and misleading. (See Attachment A) The transition procedure described on the NDIS website in January 1916 was wrong and misleading. (See Attachment A)
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• There is no definition of a “current Service provider” on the NDIS website. There is no mechanism to inform people with a disability who for any reason, such as lack of information, unwillingness to ask for help, remote location, socio –economic isolation, or intellectual disability, have no history of accessing external service providers, and no information about • theirThereeligibilityis no redressfor theavailableNDIS or howfor anyto goindividualabout applyingwho becomesfor admissionthe to victimthe scheme.of these administrative failures and legislative rigidity.The failure of the legislation to allow any discretion to the decision makerwhatsoever and the lack of any scope whatsoever for an “Act of Grace” or thecapacity to admit an eligible person retrospectively who has through no fault oftheir own failed to comply with the correct application procedure for any reasonincluding cognitive impairment, lack of information or misinformation.As Minister Bourke acknowledged in his correspondence to me, whatever therationale for the rigid age criterion for admission to the NDIS, it is evident that itis not intended to exclude people who have a significant, long-standing and non-age-related disability that predates the launch of the scheme by many years andwho failed to make an application before turning 65 as a result of a failure ofcommunication, wherever the fault for that may lie.Victims of the above inequities are advised that they may still be able to accesssupport from the Commonwealth Aged Care system. The support under AgedCare legislation is far from equivalent and is not appropriate. Aged care supportis designed to address ageing, not disability. The kind of supports that a disabledperson requires to assist them in managing their non- age-related disability andto remain an active and independent member of the community are not availableunder the Aged Care system. (for example, vehicle modification, and specialistneurological physiotherapy and occupational therapy services that target theirparticular disabling condition(s) or illness-relatedinsurancedeficits.schemeFurthermore the agedcare supports are viewed as “welfare” and are means tested. By contrast theNDIS is explicitly designed to operate as an and as such,there was a conscious policy decision that it was inappropriate anddiscriminatory to means test measures designed to enable people with adisability to work, to be educated, to participate in the community and to lead asfull a life as possible despite their disadvantage.Although I was in receipt of a disability grant and disability services from theACT Government prior to the launch of the NDIS in the ACT, the ACT did notmake my details available to the NDIS, nor did they advise me that this wassomething that I needed to do. The then Minister for Disability in the ACT, theHon Chris Bourke, however did support my “out of time” application forconsideration and I attach his letters to me which demonstrate that he alsoconsidered the transition process to have been flawed and that “the rigidity ofthe Act was not enabling the NDIS to operate consistently with the intendedprinciples.” (Attachment B)
Whilst I already have a significant mobility disability there is ample evidence tosupport the view that with specialized allied health professional therapy and theuse of various mobility devices such as foot orhtoses and braces, the WalkAide,the Musmate and the Hip Flexion Assist Device designed to assist and improvewalking, that it is possible to prevent or significantly slow the rate of furtherdeterioration of mobility and even to improve it. Funding support for therelevant specialized therapy (neurological physiotherapy) and devices isavailable under the NDIS. It is not available in aged care packages. The latterfocus their support on devices for people who are no longer ambulatory and onthe provision of home care packages where there is little or no choice ofprovider.As a result of the ACT Administration’s failure to supply my information to theNDIS and its failure to communicate with me during the entire transition period,I have suffered a very significant disadvantage, which will continue for the rest ofmy life. My peers with MS who are the same age as me and have similar orindeed, far less disability than me are receiving life-long, personally tailoredsupport and funding under the NDIS which is of great practical, emotional andfinancial value to them and to their families. Consistent with the principal that noone should be worse off under the NDIS, I submit that it is incumbent on the ACTGovernment to take the necessary steps to ensure that I am either approved forthe access to the NDIS for which I was clearly eligible on the relevant date, or toensure that the ACT Administration provides me with support specific to mynon-age-related disabilities and that such support should be equivalent to thatwhich I would receive under the NDIS.
Vanessa Fanning
Attachment A
My Experience with the transition to the NDIS in the ACT On the 8th of November 2013 I applied for a grant from the ACT Governmentunder the auspices of the Enhanced Service Offer Grants Round 2 Offer. At thetime I filled out a 23 page application form detailing the nature of my disabilitiesand my requirement for assistance. I understood that this program was part of atrial for the introduction of the NDIS and that it was important to register at thistime to ensure that I would receive continuing support under the auspices of theNDIS. I understood that my details would be made available to the NDIS when itbecame fully operational on an ongoing basis.I was successful in my application and received a grant for a WalkAide devicewhich“we hopewasthispaidallocationon 17 Aprilenables2014 andyouwhichto achieveI acquittedsomeonof27yourMaygoals2014.priorThe toletterthe launchthat I receivedof the Nationalfrom theDisabilityACT CommunityInsuranceServicesschemeDirectoratein the ACTstatedfromthat,July 2014.” I did not make further contact with the ACT agency as I assumed on the basis ofthis correspondence that I was “in the system” and that my details would beretained and made available to the NDIS.In January 2016, I became aware that other people with MS in the ACT werestarting to be contacted by NDIS planners to assist them in formulating a careplan. I contacted the NDIS by email to ask them what I needed to do to initiate aconsultation to arrange ongoing support. To my great distress, I was advised thatthe NDIS had no record of my prior application or grant and that because inJanuary 2016 I was then over the age of 65 that I was ineligible to register for theNDIS.On 7 January 2016, the ACT Government NDIS website stated specifically that tobe eligible• for the NDIS a person must have
• • “A significant and permanent disability Be a resident of the ACT Be under the age of 65 on 1 July 2014”This can no doubt be verified by accessing the ACT Agency’s internal records.I met all of these criteria on 1 July 2014 (my birthdate is 29 November 1949) andI met all the criteria stated on the ACT Government NDIS web portal on 7 January2015, the date that I formally wrote to the Minister responsible for the NDIA andthe Minister for Disability in the ACT. Following receipt of my representationsthe ACT Government altered the wording on its website.
I was advised by an official of the Department of Human Services, who had beendelegated to respond to me, that in order to obtain a formal determination on myeligibility for admission to the NDIS, I should submit an Application forAdmission to the NDIS.This•proved to be nearly impossible as:
• It is not possible to download an application form from the internet site • It is not possible to obtain an application form by going in to the shopfront and The only way you can obtain an application form is by submitting to a telephone interview in which the first question is your date of birth. If you are over 65 it is not possible to obtain an application form no matter what your age and eligibility was on the launch date.
I was advised by the NDIS that my application had been rejected on 11 May 2016on the grounds of my age. I immediately applied to the CEO of the NDIA for anInternal Review of that decision. On 24 June, 2016, I was advised that theInternal Review had upheld the original decision. I then explored the possibilityof seeking a further review of my case through the Administrative AppealsTribunal. After reviewing the legislation, I formed the view that such an appealwas unlikely to succeed given the lack of discretion accorded to the Delegate.In further researching my options to find an equitable resolution to the situationin which I found myself, I revisited the information on the NDIS websiteregarding access to the scheme. The website contains the following informationin its sectionHow willon IFAQs.be able to access the National Disability Insurance Scheme administered by the National Disability Insurance Agency? You will receive an information pack from your current disability support provider. This will contain a consent form which will ask your permission for the NDIA to contact you about having eligibility and support needs considered by NDIA. You will need to complete the form and mail it to NDIA or give it to your provider. When we receive your consent form we will ring you in the month before you are scheduled to come into the Scheme. We will ask you to complete the Access Request Form and to provide information we need to confirm your eligibility to participate in the scheme. We will also ask for some information so that we can confirm who you are (like a birth certificate) – and where you live. Finally, we will ask you about information you have on your support needs relating to your disability. This might include any current assessment you might have about your support needs, or your current Individualised Support Package plan. You can then choose to give all of this information directly to us or ask us to collect it from other people so that we have the information available before we meet with you.
Furthermore there was no definition on the NDIS site of a “current disabilitysupport provider.” However I still have the“ShouldlettersyouI receivedhave anfromqueriestheor requireCommunityassistance inServicesobtainingDirectorate.quotations,Apleaseletter contactdated 18theFebruary,ESO Individual2014 fromPlanningtheExecutiveTeam…” Director, Disability ACT, stated “…we hope this allocation enables you to achievesome of yourA furthergoals letterprior todatedthe launch1 April,of2014the Nationalfrom theDisabilitySenior Manager,InsuranceContractsSchemeandin theGrantsACT fromUnit,JulyCSD,2014…Ifstated thatyou need any assistance with accepting this offer or putting your supports or services in place, and do not have a service provider who can assist you, please contact the ESO Individual Planning Team.”
Consultant, Disability These letters,together with emailed advice from the “Clinical ACT” clearlystate that I was being offered personal access to an Individual Planning Team inthe CSD and led me to believe that the CSD was my Current Service Provider.Furthermore this correspondence took place only a few weeks before the launchof the NDIS in the ACT.The ACT CSD’s failure to contact me or advise me of how I needed to proceedgiven, that I was a very recent recipient of an ACT Government grant intendedfor disabled clients who were, in the words of the then Minister for Disability, JoyBurch, “in priority need” remains unexplained. Equally, I have hadin prioritynosatisfactory explanation of why the CSD not request my permission to providemy information to the NDIS, nor why, given that I was a person need,no further contact was made with me? The transitional access procedureoutlined on the NDIS website was not followed.The then ACT Minister for Disability was sympathetic to my situation and maderepresentations• to the Federal Minister and the Chair of the NDIA on my behalf. Iam not privy to the content of those representations but the facts are that: • I was a legitimate and eligible applicant at the time of the launch of the NDIS scheme in the ACT, • I was in receipt of support from ACT Disability prior to and at the time of the launch date of the NDIS, the information that the CSD held regarding my requirement for disability support which documented my eligibility, and/or my contact • details should have been provided to the NDIA during the transition period. I was under 65 at the launch date.Eventually, the ACT Government took the view that it was unfortunate that Iunderstood that I was already “in the system” but that there was nothing thatcould be done to redress the situation.