Speech Pathology Australia’s submission to the
Joint Standing Committee on the National Disability Insurance Scheme
Inquiry: NDIS Planning
6 September 2019
Hon Kevin Andrews MP
Chair
Joint Standing Committee on the National Disability Insurance Scheme
PO Box 6100
Parliament House
Canberra, ACT 2600
Dear Mr Andrews
Speech Pathology Australia welcomes the opportunity to provide feedback to the Joint Standing Committee on the National Disability Insurance Scheme’s Inquiry into NDIS Planning. As you are aware Speech Pathology Australia is the national peak body for speech pathologists in Australia, representing more than 9000 members. Speech pathologists are university-trained allied health professionals with expertise in the assessment and treatment of communication and swallowing disabilities.
We are very pleased that the Committee has decided to glean more information regarding this important issue. The Association has often raised concerns regarding the NDIS planning process, including delays, inconsistencies regarding eligibility, levels of therapy, access to supports, as well as the lack of in-depth knowledge regarding types of disability and appropriate support requirements amongst NDIS planners. Indeed, we and our colleagues at Allied Health Professions Australia, have consistently offered to provide support and advice to the NDIA to help upskill and inform their planners to be better equipped in their role.
We present evidence and feedback from our members working with NDIS participants and their families/carers to illustrate the key issues we feel relate to the Inquiry’s Terms of Reference. We preface this with brief background information about communication disability and swallowing difficulties and the role of speech pathologists. As always, we would be very keen to appear before the Committee, for our leaders in the speech pathology profession with expertise and ‘real life’ experience of these issues to provide more detail of the problems we highlight in our submission and to discuss potential solutions.
In the meantime, if Speech Pathology Australia can assist in any other way or provide additional
information please contact Ms Catherine Olsson, Senior Advisor Disability,
Yours sincerely
Tim Kittel
National President
2
Table of Contents
Introduction ………………………………………………………………………………………………………………………………… 4
About Speech Pathology Australia ……………………………………………………………………………………………. 4
About people with communication disability ……………………………………………………………………………….. 4
The role of speech pathologists ………………………………………………………………………………………………… 5
Speech Pathology Australia’s specific comments relating to the Inquiry’s terms of reference ……………….. 6
a. the experience, expertise and qualifications of planners; …………………………………………………………….. 6 b. the ability of planners to understand and address complex needs; ……………………………………………….. 9 c. the ongoing training and professional development of planners; …………………………………………………. 10 d. the overall number of planners relative to the demand for plans; ………………………………………………… 10 e. participant involvement in planning processes and the efficacy of introducing draft plans;……………… 10 f. the incidence, severity and impact of plan gaps; ………………………………………………………………………. 11 g. the reassessment process, including the incidence and impact of funding changes; …………………….. 12 h. the review process and means to streamline it; ………………………………………………………………………… 12 i. the incidence of appeals to the AAT and possible measures to reduce the number; ……………………… 13 j. the circumstances in which plans could be automatically rolled-over; ………………………………………….. 13 k. the circumstances in which longer term plans could be introduced; …………………………………………….. 14 l. the adequacy of the planning process for rural and regional participants; ……………………………………. 14 m. any other related matters; ……………………………………………………………………………………………………… 14 3
Introduction
Speech Pathology Australia welcomes the opportunity to provide feedback to the Joint Standing
Committee on the National Disability Insurance Scheme’s Inquiry into NDIS Planning. We have structured our feedback in response to the Terms of Reference we feel are relevant to speech pathology and
conclude with recommendations that we hope the Commission will find useful. We preface our
comments with brief background information on communication and swallowing disability and the role of speech pathologists.
About Speech Pathology Australia
Speech Pathology Australia is the national peak body for speech pathologists in Australia, representing over 9000 members. Speech pathology is a self-regulated health profession through Certified Practising Speech Pathologist (CPSP) membership of Speech Pathology Australia.
The CPSP credential is recognised as a requirement for approved provider status under a range of government funding programs including the NDIS.
As the national body regulating the quality and safety of speech pathology practice in Australia, Speech Pathology Australia is also well placed to monitor and progress workforce developments and initiatives.
Speech Pathology Australia accredits the 26 university entry-level training courses for speech
pathologists in Australia, evaluates requests for recognition of overseas qualifications, administers the continuing professional development (CPD) program for the profession and provides mentoring and support programs to the significant cohort of new graduate/early career speech pathologists currently within the speech pathology workforce. The Association also manages the formal complaints process for the profession and can, if necessary, place sanctions on practice for any member who is demonstrated to contravene the Association’s Code of Ethics.
About people with communication disability
The Australian Bureau of Statistic’s 2015 Survey of Disability, Ageing and Carers (SDAC), estimated that 1.2 million Australians had some level of communication disability, ranging from those who function without difficulty in communicating every day but who use a communication aid, to those who cannot understand or be understood at all.1
Some people have problems with their speech, language and communication that are permanent and impact on their functioning in everyday life.
Difficulties in speech, language, fluency, voice, and social communication can occur in isolation or the person may have difficulties in more than one area and can negatively affect an individual’s academic participation and achievement, employment opportunities, mental health, social participation, ability to develop relationships, and overall quality of life.
Communication disabilities can arise from a range of conditions that may be present from birth (e.g. Down Syndrome or Autism Spectrum Disorder), emerge during early childhood (e.g., stuttering, severe speech
1 Australian Bureau of Statistics (2017) Australians living with communication disability, http://www.abs.gov.au/ausstats/abs@.nsf/Latestproducts/4430.0Main%20Features872015?opendocume nt&tabname=Summary&prodno=4430.0&issue=2015&num=&view
4
sound disorder), or during adult years (e.g., traumatic brain injury, stroke and head/neck cancers,
neurodegenerative disorders such as motor neurone disease) or be present in the elderly (e.g., dementia, Alzheimer’s disease, Parkinson’s disease). The prevalence and complexity of these disorders increase with age as both communication and swallowing functions are vulnerable to the natural ageing process; therefore, with an ageing population, prevalence and subsequent demand for supports will increase.
Some people with disability have complex communication needs (CCN) which are difficulties with
understanding or the expression of communication, associated with additional physical, cognitive or sensory impairments. Many people with CCN benefit from the provision of alternative or additional methods of communication, including aided Augmentative and Alternative Communication (AAC) such as communication books, boards, speech generating devices and accessible IT for phone and internet based communication.
The role of speech pathologists
People with communication and swallowing disability span the entire age range and the nature of their difficulties impacts on most areas of life. These people frequently require interventions and supports from multiple areas of public service (including health, the disability and education sectors and mental health services). Speech pathologists, as experts in the assessment, diagnosis, and treatment of communication disorders are essential members of multi-disciplinary teams providing services to people with disability.
The clinical protocols for speech pathology treatment are evidence based and backed by strong
multidisciplinary scientific evidence for efficacy. Clinical protocols for treatment (in terms of session duration, frequency of care, intensity etc.) differ depending on the clinical presentation and diagnosis – usually speech pathology care is aimed at maximising function for that person. Speech pathologists use their diagnostic capacity to provide tailored and individually targeted intervention solutions to achieve
functional outcomes. Some speech pathologists working in disability focus their practice on the
assessment and provision of communication aids for people with CCN. This is a specialised area of the NDIS workforce. Speech pathologists working in this specific area of clinical focus typically develop their skills over many years working with people with CCN.
Speech pathologists also provide valuable contributions to the assessment of decision-making capacity and the facilitation of supported decision making for people with communication support needs. This includes developing communication accessible health information and decision-making procedures and
protocols. In addition to identification of disease/disorder, assessment and intervention, speech
pathologists can also provide counselling/support to families and caregivers, education of other
professionals, case management, consultation, and advocacy. Communication partner training, including staff training is considered an essential part of a speech pathologist’s work.
5
Speech Pathology Australia’s specific comments relating to the Inquiry’s terms of reference
a. the experience, expertise and qualifications of planners; Speech Pathology Australia has on several occasions highlighted to this Committee, either in written submissions or at public hearings, our concerns about the lack of knowledge and understanding of many NDIA planners and its impact on NDIS participants. Many of our members have provided feedback about poor decisions and inconsistencies regarding eligibility, level of service/therapy and/or provision of supports such as communication devices being based on interpretation of ambiguous guidelines and/or inadequate knowledge. Planners who are inexperienced with disability or lack knowledge of a condition need to be adequately trained and supported to ensure they are effective in their role.
Eligibility issues
We have reported on situations where a planner has determined that an individual referred to the NDIS by a Speech Pathology Australia member, is not eligible for the scheme, yet another person the member has also referred, with the same condition and similar functional needs, is determined to be eligible by a different planner. This has been particularly problematic, but not exclusive to, children in the Early
Childhood Early Intervention (ECEI) stream of the NDIS where it is unclear if the functional problems
experienced by the child will be permanent. Interpretation of the eligibility criteria by planners that a child MUST have therapy needs from more than one allied health profession and/or in one functional area, has restricted access to ECEI for children who have Developmental Language Disorder and Childhood Apraxia of Speech (and who are likely to have permanent and high functional needs in the domain of communication).
“Planners often have limited understanding of specialist areas but make final decisions about funding, sometimes based on their ‘own assessment of the situation’ (a direct quote from a planner) increase[ing] the burden of reporting - review assessments are falling through the cracks and families become exhausted by the process of fighting for funding - leaving less energy for focusing on the NDIS participant in their care.”
“The planners themselves lack knowledge about key health issues and are often cruel and negative in [their] refusal of requests.”
Levels of service/therapy
Our members have also repeatedly raised concerns regarding omissions and inconsistencies regarding levels of service/therapy. There have been examples of plans prepared for individuals with similar functional needs not including key supports that are reasonable and would be considered necessary by anyone familiar with these specific disabilities. In addition, there are many reports of over-funding or significant underfunding of supports and therapy. Planners are making decisions about ‘how much support’ for therapy is provided and what would be needed in NDIS plans in order for the participant to achieve their goals, without reference to the advice from technical advisors/experts (including speech pathologists). This has led to numerous instances where the number of speech pathology sessions listed in a plan is far above or below that which the evidence recommends for clinical efficacy (and change in functional status) for that condition.
6
Case study The following is based upon dialogue between the Association and a parent in NSW (October 2017): The child has moderate intellectual disability, severe apraxia and a diagnosis of Autism Spectrum Disorder and is non-verbal. The child uses Proloque2go (a speech generating App) on an iPad, and also uses Auslan (the sign language of the Deaf). The child was determined by the NDIS to only have ‘mild to moderate’ needs under the NDIS, and was allocated $11,000 in total in their plan (including equipment and therapy supports). The parent reported that this was equivalent to one hour of speech pathology therapy per week for the year, but would not fund any equipment or ongoing Auslan training. The parent reported to Speech Pathology Australia that before the planning meeting, the planner said “Just to let you know, I don’t believe in therapy, I usually suggest that people just go through early intervention support programs.” During the planning meeting, it was reported that the planner disputed a need for more than one type of communication system for the child and openly criticised the parent for teaching the child to sign as the child was not deaf.
It seems that planners are frequently making decisions about the provision of speech pathology supports, including the model of service delivery, based upon simplistic and reductionist views about what speech pathology interventions are or should be. While frustrating, it is unsurprising that this occurs to some extent as there are many factors which need to be considered including potential outcomes; determining the optimal service delivery; appropriate ‘dosage’ etc and whether it is appropriate to include an Allied Health Assistant. It is often a complex and dynamic process which needs to not only include, but also be responsive to, the participant, the context and a range of other factors. As planners are the nominated delegates for provision of supports in plans, it is imperative that they are provided with the skills, tools and supports, including supervision and support, needed to be able to consider and make informed and appropriate decisions regarding the recommendations made by allied health providers in their reports which are provided for the planning process.
Provision of equipment
Regarding the provision of aided Augmentative and Alternative Communication Assistive Technology (AAC AT), planners are not adequately trained, and/or are without the necessary competencies, to understand and apply the NDIS guidelines appropriately or effectively. For example, planners are reporting to participants that the NDIS does not purchase iPads because they are considered mainstream technology, so are refusing to fund the purchase of a tablet/iPad, but approving the cost of the iPad communication App. This has led to providers having to recommend (often much more costly) dedicated electronic AAC devices because the family or participant are not able to purchase the cheaper iPad,
which would ONLY be used to support communication and participation. Planners are therefore
inadvertently making decisions which are completely contrary to the NDIS principle of value for money.
There is also the added pressure and concern about having to find a registered provider who sells the required piece of equipment under the NDIS, in time before funding is ‘lost’. Clear guidelines as to what can/will be funded are required to ensure consistency, equity and timely access to these essential supports.
“Different planners from different regions have different standards. I have applied for the same equipment in the past for different clients and have had different results due to different interpretations of their own policies.” 7
Overriding recommendations of allied health professionals.
There are also cases of planners overturning or ignoring professional recommendations for equipment and services, as well as feedback that they are not reading provider reports and are therefore ill-prepared for planning meetings. We are aware of cases whereby a recommendation made by an experienced speech pathologist has been denied outright for the participant or where a type of AAC equipment has been denied and an alternative approved without consultation with the speech pathologist as to its appropriateness for the individual participant.
“I’ve had a client knocked back for a LAMP app (which he uses functionally to communicate). I didn’t apply for a dedicated device because all those requests were getting knocked back so I tried to help NDIS and suggest a cheaper option. The reason the planner gave her was “children under six shouldn’t be using that sort of technology to Communicate, they are too young”. Who are these people? What is their background in AAC? I’m a disability clinician, but I am starting to think this is all too hard now that NDIS is in town.”
The introduction of the trial of Assistive Technology (AT) Assessor as a ‘trusted’ source of information in relation to AT requests has the potential to raise awareness in planners and in participants of the role and value of Augmentative and Alternative Communication (AAC) Assistive Technology. Raising awareness
can prevent planners from providing advice and direction that is outside the scope of their
knowledge/experience and facilitate the engagement of appropriate providers by participants and support identification of the optimal AAC AT solution for them.
Unfortunately, the Association is not aware of any AAC AT provision being included in the AT Assessor pilot, so it is difficult to determine how the AT Assessor role may function in relation to provision of AAC AT, which is a more dynamic and complex process than the provision of other types of AT equipment. It is important that the new role is not rolled out without consideration being given as to how it may function in relation to the provision of AAC AT.
Promoting “cheaper” therapists
Regulation is also lacking regarding Allied Health Assistants and/or students who are being seen by planners as a cheaper option to a qualified therapy provider. Whilst this is concerning from the point of view of expertise and quality of service, it is also ineffective and potentially dangerous when no support or funding is included to provide for a qualified therapist to oversee them. This practice is yet another example of insufficiently trained NDIS staff making decisions about an individual’s support needs, which may be complex and require specialist assessment. This has the potential to impact negatively on an individual participant if they are not receiving support from a suitably qualified and experienced provider.
“Assistive technology that has been recommended as the optimal tool to support communication is often declined due to ‘cheaper options’ available, even though the cheaper option hasn’t been recommended for a reason.”
“Insufficiently trained NDIS staff [are] making clinical decisions that they are not qualified to make and impact[ing] on the potential that clients can reach for example recommending that people with severe communication and behavioural difficulties use ‘student’ speech pathologists or untrained helpers”
8
Case Study
In October 2017, the Association was contacted by a grandmother of three children who are deaf. Their mother is also deaf and therefore the grandmother is making inquiries on her behalf. At the planning meeting for the family the planner asked the mother if she couldn’t possibly ‘cut back on speech therapy’, or alternatively ‘find a cheaper therapist’, as it was going to be very expensive (implied too expensive) to have both speech therapy and all of the required equipment (hearing aids, assistive devices for the home) in their packages.
This practice of limiting the packages provided to participants, regardless of what might be needed in order to facilitate their development and participation, worryingly appears to be an increasing trend in the scheme.
In a number of recent forums attended by representatives from Speech Pathology Australia, some NDIA staff have made comments that seem to imply that it is not intended for the NDIS to provide enough funding to address all of the participants needs and that ‘choice and control’ over what they spend their
funding on is increasingly meaning an either/or choice. For example, many participants with
communication and swallowing disabilities, are having to ‘choose’ between accessing supports to be able to eat and drink enjoyably, effectively and safely, or therapy that helps them learn communicative strategies to be able to participate more fully in their family and community.
The shift from block grant funded providers to individual participant funded plans under the NDIS seems
to be resulting in a ‘rationing’ of funding for services and equipment. This would be in complete
contradiction to the intent of the scheme and the recommendations of the Productivity Commission to ‘fix’ what was considered a broken system and create a new way of providing disability services by which Australia is able to meet its obligations under the United Nations Convention on the Rights of Persons with Disabilities.
b. the ability of planners to understand and address complex needs;
Many planners are making important decisions regarding eligibility and supports with little or no
experience or knowledge of disability and the complex needs of some participants.
While we would not expect NDIS planners to have in-depth knowledge of all types of disability, we would expect criteria guidelines and protocols within the scheme to help planners access professional input and advice when required. For example, the distinction between developmental delay and disability in early childhood is clinically complex and not straightforward even for clinicians. The ECEI criteria and its application does not reflect this complexity and requires more sophisticated understanding of early
childhood delay and disability than currently exists by those making eligibility decisions. Speech
Pathology Australia have offered assistance to the NDIA to help clarify what ‘types’ of children and functional problems would benefit from what type of service and support through the ECEI.
The current inability of planners to understand and address complex needs is causing delays for
participants to access the scheme as their eligibility is being queried and more information is sought. It
also results in inappropriate levels and types of support being approved. Not only are these
consequences stressful for participants and their families but also results in unnecessary appeals. 9
“a 5 year old with virtually no speech who takes 6 months to be deemed to meet [ECEI] criteria is a joke. a 3 year old with a genetic duplication that has a 97% chance of having an intellectual disability, ASD, mental health disorder etc etc to be asked for further information when the paediatric letter says he has little language, is a joke. I have many other examples of long waiting times to meet criteria for these little ones - kids that have obvious needs. They have turned the family centred approach of Early Intervention into a bureaucratic nightmare particularly for many families who are less able to negotiate and advocate for their kids”
“One of my speechies’ NDIS families has been told by a planner that speech therapy does not work in Downs Syndrome folk over the age of 15.”
“I had a client who called up about her daughter’s application and was told it had been “closed” due to “not enough evidence”. This child is 3.5, has an Autism diagnosis, and is non-verbal. We were in disbelief. They hadn’t even told the family that it had been closed, the [family] thought they were waiting on a planning meeting. So they are starting again”.
c. the ongoing training and professional development of planners; We would argue that ongoing training and professional development of planners is essential to ensure they have adequate knowledge to be effective in their role and ensure that participants have timely access to the support and services they need. We have consistently offered our support and advice to the NDIA to help upskill their planning workforce to have a better understanding of communication disabilities, swallowing disorders and supports such as AAC devices as well as raise awareness regarding the roles of speech pathologists. Unfortunately, to date, the NDIA has not pursued this offer.
d. the overall number of planners relative to the demand for plans; While we do not know the exact numbers, availability or ratio of planners relative to demand for plans, we are aware of participants having to wait, often for months and the detrimental impact of these delays. Many of these problems seem to be exacerbated by the high turnover of planners within the NDIS.2
e. participant involvement in planning processes and the efficacy of introducing draft plans;
Supporting participants to understand the support options available and the evidence base would ideally be part of the role of planners/Local Area Coordinators (LACs)/ECEI partners. However, providers have often had to help participants and/or their families/carers navigate the NDIS system as many do not know what to ask for, or where to look to get information to assist with their decision-making process, or where to find providers of certain services once needs are established.
It would be useful to encourage participants (or partners such as LACs/ECEI partners) to allow providers to view draft plans to identify and rectify any errors or oversights, such as the ‘misallocation’ of support
item funding and/or inaccurate recording of the type of plan management. We think participant
2 https://www.pc.gov.au/inquiries/completed/ndis-costs/report/ndis-costs.pdf
10
involvement in reviewing draft plans prior to them being signed off has the potential to reduce errors in plans and subsequent requirements for plan reviews.
This will help minimise the risk of participants not being able to use the funding to access the supports they are seeking. For example, members have informed us of instances where funds for the purchase of low cost, low risk Assistive Technology has been placed in the Consumables budget, but because this support item has not been nominated as ‘self or plan managed’, neither the participant nor providers have been able to access the funds, leading to a requirement for a review, which often takes months to achieve and therefore delays supports and services being provided to the participant.
f. the incidence, severity and impact of plan gaps; High workload, poor communication and high staff turnover amongst the NDIA, Local Area Co-ordinators (LACs) and planners, has resulted in loss of continuity in supporting participants and caused service gaps when a participant’s plan has expired before renewal. While we do not have data regarding incidence, we have received feedback regarding the impact of plan gaps with examples of providers not being paid for services rendered ‘outside’ of plan dates and cases of services to participants being interrupted or stopped. Several speech pathologists reported that, after continuing to provide services to participants during the ‘gap’ between plans (as explicitly encouraged by the NDIA) they were subsequently told that they would not receive payment for these services because the participant has been refused a further plan/funding.
“Half my clients had plans run out last week. I have been contacting the NDIS since early March to organise review meetings. They happened 2 weeks ago. The LAC said he would be in contact about continuity of plans. I contacted several times before I was due back at the school on Weds. They did not return any contact attempts (e-mail or phone). As a result, I did not go to work on Wednesday because I did not know if the children had funding. I rang again on Weds and he said, “oh yeah, all the kids have had a 3-month extension because I am too busy.”
Additionally, at times due to the shuffling of planning positions across geographical areas, and other factors that are not communicated to participants, there have been numerous reports across 2018/19 of plan reviews being brought forward by several months. This has a significant negative impact upon families who then have their funding ‘cut short’, but also puts extensive pressure upon providers to provide complex reports at short notice. The Association has been informed that some plan gaps result from the ‘freeze’ being applied to the previous plan and then delays in the new plan being submitted and approved.
“In the past week I have had quite a few plan and self managed clients tell me their reviews have been brought forward. In some cases by three months, and with no warning. One due in July is being done next week. This means in some cases we don’t have time to do review assessments at all, or can’t do them yet because 12 months hasn’t elapsed since last assessment. Clients are being given one to two weeks to get their paperwork in order which is stressful to them (and me!)”
“Even with a review 10 weeks early, one of my families had a 3 week gap between plans. The planner stated that they would submit close to the end of the plan to maximise use of the old plan, which we viewed positively. Then she “forgot” to submit at the right time. So frustrating! I find it especially challenging as families seem to look to us for reassurance that the system will work as it should.”
11
While there have been fewer reports of gaps, or lengthy waiting times, for the provision of plans, of late, we are concerned that these improvements are a response to a temporary shift in resources by the NDIA to solve an immediate problem rather than the provision of adequate resources to permanently address the issue.
g. the reassessment process, including the incidence and impact of funding changes;
Our member feedback regarding the reassessment process shows that it is mainly applied to children as they turn seven years of age and shift from ECEI services to the mainstream NDIS. Those with developmental disorder often must go through a reassessment process to in effect ‘prove’ that they have a long term/permanent disability. This is an unnecessary and stressful process as families face the possibility of being told that their child is ineligible for the scheme and that their funding and support will therefore cease. It is a similar situation for children who have been given an initial short-term NDIS plan for six months, as the NDIA is in effect waiting to see if the child is still considered eligible (i.e. they ‘still have a disability’) six months later. This is putting families, many of whom are already vulnerable and under a huge amount of stress, into an added state of uncertainty and anxiety.
h. the review process and means to streamline it; “Scheduled plan reviews are not being held on time - managing this from an administration point of view is time consuming and difficult - especially if clients are NDIA managed”
Feedback from Speech Pathology Australia members indicates that requests to review a plan outside of the standard one-year cycle are taking a minimum of six months, leaving participants in limbo, and creating significant distress. There should be delineation between scheduled plan reviews, and those which are requested by the participant or their family due to an error, or because there has been a request for a review of a decision.
A process to ‘triage’ plan review requests needs to be developed and consistently implemented.
Straightforward changes to plans should not have to go through a full review process. It would save time and participant frustration and anguish to distinguish between reviews which are ‘significant’ and those which are less complex. For example, changing the way a plan is being managed should, in most cases, be a simple process and quickly implemented but it seems that this change request is just put on the list and addressed in date order. Plan errors, such as funding being placed in the incorrect category, should also be managed quickly and efficiently to lessen the impact of such administrative glitches upon the participant.
Additionally, if the planning process is improved and participants receive plans that meet their needs, and do not contain errors, then hypothetically this would result in a reduction in unscheduled plan reviews, and subsequent complaints and escalations to AAT.
“We are 8 months into zero response to a review of a reviewable decision and a complaint. We’ve been to pollies. We’ve been everywhere. No one will help until the NDIS have completed their internal review. But they seem to be getting around that by just not doing it”
12
i. the incidence of appeals to the AAT and possible measures to reduce the number;
We would argue that a shift in focus from one that prioritises applying a restrictive and arguably detrimental focus on the scheme’s financial ‘sustainability’ to focus instead on providing relevant and adequate ‘reasonable and necessary’ supports, would help reduce the number of appeals to the AAT. Ensuring the scheme is responsive and efficient will require the provision of clearer guidelines and training to ensure that participants receive the supports they need in a timely manner and are not having to appeal decisions regarding eligibility and/or where required supports have been denied, excluded or delayed.
This constant focus on budget is not only causing anguish, and in some extreme cases actual harm to some of society’s most vulnerable but also placing an unnecessary cost burden on the scheme. Money that should be used to provide the services and supports participants need in the first instance is being wasted on administrative appeals against poor decisions and inappropriate allocation of funding.
The current scheme is so flawed that some participants and their families are being forced to take extreme action, including unnecessarily involving the AAT or tactics (as described in the member feedback below) simply to get original unfair decisions reversed. As this feedback also highlights, the most vulnerable are not able to self-advocate, placing them at a disadvantage in regard to their levels of support. We would argue that participants and their families should never be placed in a situation whereby they have to act so forcefully to be allocated the appropriate funding for the supports that they require, which are often in the end deemed to be reasonable and necessary.
“I had a parent do this exact thing last week with her severely complex child - 4 hrs in the NDIS office with her child eventually led to an immediate change in plan and a mtg scheduled with a very high up person in the NDIA.”
“It has been the ones that are prepared to fight and advocate tirelessly who end up having their requests met by the NDIA. I had a particularly tenacious parent who told me she refused to leave the office until her plan was increased. She told me she sat there for hours until they eventually came around! I find stories like these particularly disturbing as [it] shows how inconsistent it can be. It also leaves our most vulnerable clients (low levels of literacy, low SES backgrounds, minimal English skills, etc.) in a position where they’re more likely to accept whatever is given to them. “
“I applied for an internal review, they upheld their original decision, I applied to AAT, about 2 weeks before the scheduled mediation meeting they started contacting me to discuss things and the day before the meeting we reached agreement on a new plan. I got everything he needed. “
j. the circumstances in which plans could be automatically rolled- over;
There are some circumstances whereby plans could be automatically rolled-over, these being where the existing level of support is proven to be adequate and the participant has what is considered to be a static condition with no changes expected to occur. There are also cases whereby existing funds have not been spent within the lifespan of the existing plan, this could happen for a variety of reasons, but arguably any unspent funding could be rolled-over. Whatever the circumstances this process would still need to be
flexible to respond to any indication by the participant, their families, and/or their providers that
needs/circumstances have changed and therefore plans may need to be altered before the next scheduled review.
13
k. the circumstances in which longer term plans could be
introduced;
Most children and adults who are in receipt of NDIS plans have a diagnosed developmental disability which is permanent. While it is understood that the goals of participants may change leading to the requirement for a new planning process, and perhaps a decision to increase or decrease some of their supports, it is likely that for a large proportion of participants, this will rarely occur, or if it does, will only require changes to a small proportion of their total supports. For example, a person with cerebral palsy who is living independently and attending university will likely require the same level of core supports over more than one year. Their need for AT may be predictable (i.e. once every two years), so they would need to undertake a new planning process only if their goals or their circumstances changed significantly.
It is recommended that the NDIA undertake a process to identify which components of participant’s plans are likely to vary and provide an alternative, simpler and quicker planning process that focuses on the capacity building supports. We feel this process would be best informed by participants and experienced providers. For example, longer plans could be suitable for children with developmental disabilities with reviews agreed at a particular point in their developmental pathway, however, this process and any agreed timing schedule would still need to be flexible to respond to any indication by the participant, their families, and/or their providers that needs/circumstances have changed and therefore plans may need to be altered before the next scheduled review.
The role of ‘Support Coordinator’ could also be expanded to include supporting participants in service planning. Part of the preparation for the planning process could identify whether a plan may be able to be extended; this could complement the role of the LAC or ECEI partner.
l. the adequacy of the planning process for rural and regional participants;
While we appreciate the need for planning sessions to be undertaken over the telephone, especially for rural and remote participants, our members have expressed concern that this hinders a planner’s ability to develop a relationship with a participant and their family/carers. Having a telephone planning session is also not suitable for many individuals with a communication disability. Finally, it could also be considered a missed opportunity for planners to gain a better understanding and experience of some types of disability as the session is not carried out face-to-face.
m. any other related matters; Another issue that has caused delays to access NDIS supports and services, and unnecessary added frustration and administrative burden to families, is the loss of ECEI applications/files. This seems to be occurring for several reasons including NDIA IT problems, administrative lapses or communication breakdown, indeed one family has reportedly had their application “lost” six times.
“I am in the process of applying for my son. They have lost the forms 6 times and I ended up hand delivering them to the local NDIS office. I follow up each email two days later to ensure that the documents have been received and can be opened”
We understand this to be a nationwide issue but was particularly notable in the Melbourne area when children’s files were being transferred from ECIS services, and the following quotes are from two Speech
14
Pathology Australia members based in Queensland forwarded to the Association as recently as August 2019:
“I have had an increasing number of children whose parents have applied for the NDIS for them, wait for months, contact the NDIS and are unvaryingly told their applications have been lost and they need to do the whole thing again”
“We had a number of ECEI families told their application was lost. They were all submitted before Christmas and it only rolled out here in July last year. About 6 or 7 families had to start the process again with many rushing because their [child’s] 6th birthday is approaching”
We have also received a report whereby an ECEI planning meeting was delayed by a year as the NDIS
planner(s) continually contacted an illiterate Indigenous family by mail when they had specifically
requested at the onset for the provider – in this case a speech pathologist – to be contacted to arrange and lead the planning process on their behalf. The lack of response from this vulnerable family resulted in their being ‘taken off the list’ by the ECEI partner organisation and the speech pathologist having to follow up and appeal the process on their behalf, at a cost of many unpaid hours, and significant emotional burden.
While it is necessary to ensure that families consent for any information that is personal and pertinent to them to be shared, we are aware of many instances where the current requirement of the scheme, that
participants explicitly identify whether, and which provider, the NDIA is able to communicate with
regarding plans, is creating delays, inefficiencies and adding to the stress levels for participants, their natural supports, and providers. For example, providers may find themselves unable to claim for services provided, because a participant’s plan has become plan managed, but the participant is unaware that this has occurred, or doesn’t understand the implications. In these cases, it is difficult to understand how a participant’s control over their information would be compromised if an NDIS provider was to access information that only pertained to claiming payment for services provided.
The Association believes that some simple and sensible changes could be made to the consent processes and requirements which would reduce stress for the NDIA, partners, participants and providers alike, without compromising the integrity and control by the participant of their own information.
Once again thank you for the opportunity to provide feedback on this important issue, if Speech Pathology Australia can assist in any other way or provide additional information please contact Ms
Catherine Olsson, Senior Advisor Disability,
15