Submission to the Productivity Commission Inquiry into the National Disability Insurance Scheme (Costs) By Dr Vanessa Fanning Individual
Postcode: 2603
My submission is based my personal experience of having been excluded fromthe NDIS due to the failure of the transition arrangements and the rigidapplication of an administrative technicality.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.My submission has regard to the following issues and observations stated in theCommission’s• Issues Paper released on February 22, 2017.
• • The governance and administrative arrangements of the NDIS. (p7) Whether there are any issues with scheme design. (p7) • Ensuring the best outcomes for people with profound or severe permanent disability. (p7) “To streamline the process of accessing the NDIS, people receiving support under specified state and territory disability programs are • generally assumed to meet the disability requirements specified in the Act.” (p13) • “early intervention support is likely to benefit the person by reducing the • person’s future needs for supports in relation to disability.”(p14) “Preventing the deterioration of such functional capacity.”(p14) • “The NDIS is intended to meet people’s disability support needs, not to replace other mainstream services.”(p15) “Poorly defined boundaries between the NDIS and mainstream services • can raise the risk of gaps in services…and cost shifting (between agencies or governments.)”. (p15) • Is the way the NDIS refers people who do not qualify for support under the scheme back to mainstream services effective? (p17) • The rationale behind the concept of “reasonable and necessary supports” as set out on p20. • The rationale behind the objective of reducing the burden on informal carers as set out on p 22. • The assertion that “State and Territory Governments provide mainstream services and offer support to those unable to access the NDIS”. (p28) Issues with the scheme’s design, …in ensuring the best possible outcomes for people with severe and profound disability
I have detailed my experience with the transition to the NDIS in the ACT atAttachment A.I have also attached correspondence that I received from the then Minister forDisability in the ACT Government at Attachment B.On 24 February 2017 the NDIA issued a statement in response to criticism of thetransition arrangements stating that :
“The NDIA is committed to working with people with disability, their families and carers to resolve any issues during this period of transition.” My experience provides no support for the assertion that the NDIA is willing towork with people with disability to resolve any issues during this period oftransition. The reverse has been the case to date.
Vanessa Fanning
Issues with Scheme Design and Transition Arrangements.
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. 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. • The transition procedure described on the NDIS website is wrong and • misleading. 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 their eligibility for the NDIS or how to go about applying for admission to • There is no redress available for any individual who becomes the victimthe scheme.of these administrative failures and legislative rigidity.
Issues with the Scheme Legislation 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.In particular, if the age restriction cuts in before the administrative failure isidentified, the otherwise eligible person with a disability is permanently andirreversibly excluded from the NDIS. This constitutes a major injustice.Whatever the rationale for the rigid age criterion for admission to the NDIS, it isevident that it is not intended to exclude people who have a significant, long-standing and non-age-related disability that predates the launch of the schemeby many years and who failed to make an application before turning 65 as aresult of a failure of communication, wherever the fault for that may lie.
The fact that the scheme has different start dates in different regions and Statesunderlines the arbitrary nature of the age-based cut-off for eligibility. This meansthat among eligible applicants of identical age, a proportion will have access tothe NDIS and many others won’t, depending on where they live.Applicants affected by the above inequities will be advised that they may still beable to access support from the Commonwealth Aged Care system. The supportunder Aged Care legislation is far from equivalent and is not appropriate. Agedcare support is designed to address ageing, not disability. The kind of supportsthat a disabled person requires to assist them in managing their non- age-relateddisability and to remain an active and independent member of the communityare not available under the Aged Care system. (for example, vehicle modification,and specialist 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 asfullProposeda life asCostpossibleSavingsdespiteMeasurestheir disadvantage. Legislation is currently under consideration to roll a variety of paymentscurrently available to people with a disability into the NDIS. This will mean thatif individuals who are not admitted to the NDIS will not be able to accesspayments for which they are currently eligible. If this were to be enacted itwould arbitrarily exclude people aged over the age of 65 from accessingpayments such as the Mobility Allowance. Such blatant age discrimination isparticularly extraordinary in light of the Government’s decision to progressivelyincrease the retirement age beyond 65 and the apparently bipartisan support ofthe principle that people over the age of 65 can and should continue toundertake both paid and voluntary work, undertake vital caring roles, undertakefurther education, continue to live in their own homes and continue toparticipate actively in society. All research shows that healthy ageing requiressuch participation in the economy and the community and results in net savingsto Government outlays. It would be inequitable, short–sighted and counter-productive to eliminate the scarce supports that remain available to a limitednumber of people with a disability over the age of 65. If enacted the newmeasures would increasing marginalization, isolation and disadvantagesexperiencedComments onby observationsolder people withand astatementsnon-age-relatedcontaineddisability.in the Issues Paper
“To streamline the process of accessing the NDIS, people receiving support under specified state and territory disability programs are generally assumed to meet the disability requirements specified in the Act.”(p13)
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) “early intervention support is likely to benefit the person by reducing the person’s future needs for supports in relation to disability.”(p14) “Preventing the deterioration of such functional capacity.”(p14) 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 the WalkAide, the Musmate and the HipFlexion Assist Device designed to assist and improve walking, that it is possibleto prevent or significantly slow the rate of further deterioration of mobility andeven to improve it. Funding support for the relevant specialized therapy(neurological physiotherapy) and devices is available under the NDIS. It is notavailable in aged care packages. The latter focus their support on devices forpeople who are no longer ambulatory.It should also be noted that many younger people with MS are currently beingfound ineligible for the NDIS on the grounds that they do no exhibit a sufficientdegree of “permanent and ongoing ”disability. Given that MS is a progressive,degenerative disease this attitude makes a nonsense of the purported adherenceto “early intervention.” “Poorly defined boundaries between the NDIS and mainstream services can raise the risk of gaps in services…and cost shifting (between agencies or governments.)”. (p15) Indeed! This is exactly what is happening and individuals with disability arebearingIs the waythethecost.NDIS refers people who do not qualify for support under the scheme back to mainstream services effective? (p17) “State and Territory Governments provide mainstream services and offer support to those unable to access the NDIS”. (p28) Equivalent support to that available under the NDIS for people with a non-age-related disability who have been excluded from the NDIS is simply not availableunder state and territory schemes. The ACT Government has essentially closeddown its Disability Agency.
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 ofreceivedthe 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.
There appears to be no definition on the NDIS site of a “current disabilitysupport provider.” However I do“Shouldhave theyoulettershave anI receivedqueries orfromrequirethe CommunityassistanceServicesin obtainingDirectorate.quotations,A letterpleasedatedcontact18 theFebruary,ESO Individual2014 fromPlanningthe ExecutiveTeam…”Director, Disability ACT, stated “…we hope this allocation enables you to achieve some Aoffurtheryour goalsletterpriordatedto the1 April,launch2014of thefromNationalthe SeniorDisabilityManager,InsuranceContractsSchemeandinGrantstheUnit,ACT fromCSD,Julystated2014…Ifthat you 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 I hadthought that I was already “in the system” but that there was nothing that couldbe done to redress the situation.In turn the NDIA took the view that it was too bad that I didn’t apply foradmission to the NDIS using the proper form at the proper time but that the Actallowed the Decision Maker no discretion to consider my circumstances.