DISCUSSION PAPER.
NDIS CURRENT ISSUES AND
RECOMMENDATIONS.
AUTISM ADVISORY AND SUPPORT SERVICE
88 MEMORIAL AVE LIVERPOOL NSW 2170
WWW.AASS.ORG.AU
MARCH 2019
Autism Advisory and Support Service (AASS) are a grass roots not for profit community organization who support families on a daily basis through the journey of having a child with disabilities, especially an Autism Spectrum Disorder. We also offer a multi disciplinary approach to therapies and supports for each individual, depending on their needs and those of the family. This is in line with the true spirit of the NDIS. Choice and Control.
While in theory the NDIS is a wonderful scheme that has supported many, the reality in our area of Liverpool and surrounding local government areas, is quite different.
AASS, through the families we support and serve, have experienced a number of issues and anomalies. Each NDIS experience and funding plan is subjective. If one has a planner who understands and listens to each experience, then the outcomes are more favorable than those who have planners who need to Google the disability during the planning meeting. We have also experienced a number of administrative issues that are frustrating and time consuming.
AASS are passionate about the welfare of the families we serve. This paper reflects the reality of the NDIS experience of most of our participants. We have put together a few ideas on how the current NDIS system can be tweaked to strengthen foundations so children and adults can realize their individual potentials and lead independent lives outside of the welfare system.
Grace Fava OAM
Founder/CEO
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The NDIS was introduced to
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“provide all Australians under the age of 65 who have a permanent and significant disability with the reasonable and necessary supports they need to enjoy an ordinary life”
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“help people with disability achieve their goals. This may include greater independence, community involvement, employment and improved wellbeing.”
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“an insurance scheme, the NDIS takes a lifetime approach, investing in people with disability early to improve their outcomes later in life.”
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“provide people with disability, their family and carers with information and referrals to existing support services in the community.”
Issue Recommendation
Limited workforce. ✓ Engagement/recruitment drive in schools
Since the introduction of NDIS, many senior and and Universities to discuss the benefits of experienced therapists have found there is more a career in allied health.
money to be made in working as a standalone ✓ Retraining workers faced with
practice than working for an organization. This redundancy.
has created a void in the sector for senior and ✓ Any worker engaged in disability support
experienced therapists, in particular in the field work MUST be accredited and have of Occupational Therapy. There is also a lack of experience before starting in the role. experienced, capable support workers. Most workers in the field of disability support seem to be individuals with limited English and no experience in the sector.
No Choice and Control in plans. ✓ Allow funds in each plan to be flexible
Currently all plans are funded to an unofficial cap. between categories without the need for Each cluster of funds are dictated and are not a lengthy review. flexible in the plan. If a participant requires more funds in one category they must apply for a change of circumstance/request for unscheduled review which will take in excess of six months in many offices.
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Autism Level 1 and 2 ✓ All levels of Autism to receive NDIS to
Currently Autism level 1 is not given immediate support their needs
access to the NDIS and level 2 is now under ✓ Better training for planners to identify
scrutiny by an “expert panel”. According to the needs and areas for support
NDIS fact sheet: ✓ Better support around transition to the
“The NDIS will provide all Australians under the workforce, social skills, sensory needs age of 65 who have a permanent and significant and communication to empower disability with the reasonable and necessary participants with the tools to be supports they need to enjoy an ordinary life. The independent members of society. NDIS will help people with disability achieve their goals. This may include greater independence, community involvement, employment and improved wellbeing.” Individuals with levels 1 and 2 Autism are capable of achieving independence with the correct and meaningful supports. These participants are the ones for whom the NDIS can help to live independent lives contributing to society and not depending on welfare. Yet we are focusing on this group as they are one of the largest to require support.
No clarity around NDIS guidelines. ✓ Clear policy around what can and cannot
Presently the guidelines are subjective at best be funded
and unclear at worst. Any advice requested by ✓ Specific and clear policy and/or
NDIS workers will never be issued in writing and guidelines that stipulates what is is to be taken at our own risk. Participants and required for the participant. This needs organizations cannot wait for the Appeals to address the necessary supports for tribunal to issue a decision. individuals with a physical disability as There is a disparity around Australia and within well the complex and varying needs for regions with plans, understanding of phrases those with invisible disabilities who often such as “reasonable and necessary” and even have comorbid diagnoses. basic understanding by planners of various disabilities and the level of need required by participants.
Untrained Planners. ✓ Meaningful and extensive training for
Many planners and local area coordinators (LAC) planners and LAC workers in disabilities have no experience in disabilities. For many LAC’s and how they impact on participants and the only requirement to employment is their families.
knowledge of a second language. They are ✓ Professional development annually for
unfamiliar with the lived experience of planners and LAC workers.
participants and have been known to google the ✓ Planners to have a current disability
disability in a planning meeting. qualification – at minimum a certificate IV in disability or community services.
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✓ Planners to have proficient literacy skills to understand reports and relay this information.
Waiting times to access NDIS Funds. ✓ If a participant has an official diagnosis
Many families have to wait in excess of 6 months that meets NDIS access criteria, they to enter the NDIS. They are left with a few should be allowed immediate funding Medicare items to try and commence therapy. and support. This should take no longer Many organizations will not accept a participant than 6 weeks from time of application without an NDIS plan. approval. ✓ Introduce a tiered system of funding for straight forward participants who have an invisible disability. EG Level 1 Autism $15,000 Level 2 Autism $25,000 Level 3 Autism $45,000 These funds can be spent on therapies, incontinence products and accessing community and other social programs. This will reduce the need for a planner and for frustration for families. If these amounts are not sufficient then the participant can request a planning meeting.
Waiting times to access Early Child Early ✓ Approved ECEI participants should
Intervention (ECEI (funding) receive a package of $10,000 to start Current wait times in south west Sydney for ECEI early intervention treatment. In the spirit are in excess of 12 months. In Fairfield and of HCWA this amount will be a stop gap Liverpool local Government Areas alone, there until their planning meeting.
are 800 plus children waiting to access a planning ✓ Pay outside agencies to provide family
meeting. The workforce is severely undermanned support. and staff are seconded from outside agencies. This not only lengthens waiting lists for therapies, but also puts a strain on planners to complete as many plans as possible in a short time frame, leading to plans that do not meet the participants needs. Families are left with a few Medicare items to try and commence therapy. Many organizations will not accept a participant without an NDIS plan.
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As part of the ECEI program, participants are not required to have a diagnosis and are to receive supports and early intervention in the form of therapy. This is NOT occurring. ECEI waiting times significantly impact the Education system in a negative way. Children with additional needs require early intervention therapy to prepare them for school. These waiting times are unacceptable.
Unofficial caps in funding of plans and cuts from ✓ Offer a capped plan (see solution above)
one plan to the next. to save parents from the addition stress There are obvious caps in funding for of attending planning meetings. This will participants. This is despite their needs for save money as it will decrease the need supports. (See E Nashmi plan) for planners.
Plans are cut in half from one plan to the next, ✓ Planners to read reports and adhere to
even with professional reports stating that the the professional recommendations. current levels of support are achieving goals.
Uncertainty around funding of supports for ✓ Clear policy on financial responsibility for
Children in the care of the Minister. out of home care children.
Participants under the care of the Minister (out ✓ Clear guidance on what the NDIS will
of home care) are caught in a financial tug of war fund and what FACS/Agencies are between NDIS and FACS as to which department responsible to pay. is financially responsible to fund items of need.
Access questions for Participants with an ✓ A new set of questions that are directed Invisible disability. to participants with an Invisible disability Current NDIS questions that form the basis of an to ensure meaningful and relevant NDIS plan are aimed at participants with a information is gathered. physical disability. They are yes or no questions which in many cases for those with an invisible disability such as an Intellectual Delay or Autism, do not apply.
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No current safety net for families in crisis. ✓ A line that families in crisis can call that Currently there are no safety nets for families will offer immediate and effective who cannot cope with children presenting with support for children at risk of escalating violent and aggressive behaviours. For relinquishment. those who call an ambulance, they are given a ✓ A specialized centre that is staffed with sedative and by the time they reach the hospital, 24/7 care for participants like this one they are calmer and are told to go home. For who are trained in supporting individuals those with no informal supports they are faced with profound disabilities. with nowhere to turn. A single mother rang us on a Saturday to relinquish care (there was no other number to call). We contacted the respite centre the child attends and they said they could not help at all. After contacting more than a dozen organizations we finally found a provider to offer emergency accommodation. This process took two weeks. This child self harms to the point of requiring hospitalization.
Disparity between plans and NDIS offices, and ✓ Where more than one person in a family
planners. are eligible for NDIS funding, they should There is a lack of consistency in plans and always have one planner who can take in funding. While each participant is unique with the needs of the family and ensure equal their own needs and family situations, we have and meaningful funds are allocated.
cases where identical twins with the same needs ✓ To ensure plans are less subjective,
and diagnosis had different planners and as a introduce tiered funding for levels of result, vastly different funding. disability.
Assistive Technology (AT) requests. ✓ Once Assistive Technology (AT) has been
In order to access AT, the planner currently approved at the planning stage there approves this. The participant then has to reapply should be no need to reapply for quote with a quote and wait for approval, even though approval. Each plan with AT has already there is an amount granted in the plan. We have been funded with a cap. The participant participants who are currently waiting in excess should be allowed to purchase from the of 12 months for communication devices that will plan. This will free up planner time to give them a voice. focus on other participants.
Lack of funded services in South West Sydney to ✓ Fund more organizations in south west
support with plan reviews, changes in Sydney to support families in these areas.
circumstances and basic support. ✓ Recruitment drive for more support
South west Sydney is growing in population with workers.
young families finding more affordable housing ✓ Fund AASS for the support we provide to
options there. There is a great influx of families and the community at large. immigrants with young families, in particular from middle eastern backgrounds where cultural practices (marrying in the family) produce
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children with chromosomal disorders and other disabilities. It houses one of the largest culturally and diverse populations in the country and one of the lowest socio economic populations in the state. Yet with all of these issues there are long waiting lists for services, no funding for support coordination and no basic supports to guide families through the maze of the NDIS. The LAC’s are not able to offer meaningful support and often do not return calls from families in need. AASS are inundated with calls from Medical professionals, schools and even NDIS workers to support these families.
Lack of support coordination funded for families ✓ Funding for support coordination to
in need. families who fit the criteria to build Support Coordination was established to support vulnerable families capacity and parents and carers from non English speaking knowledge, so that they can effectively backgrounds and those with additional needs to manage their loved one’s funding.
navigate the NDIS and establish meaningful ✓ Planners and LAC’s to have training to
supports for the participant. recognize families requiring support AASS have discovered many parents and carers coordination.
who have not been funded for support ✓ Funding for interpreting services where
coordination who live in south west Sydney. required
These families are/have: ✓ Access to the portal in a format other
• refugees, victims of domestic violence, than online.
single parents and individuals who have a ✓ Fund more organizations in south west
mental health issue. Sydney to support these families.
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Have no support system in Australia
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Low or no level of computer literacy, some do not even own a computer, lack of access to the portal
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At risk of exploitation from providers, seeking to access all of the NDIS funding from the participants plan
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Shame and embarrassment when they realise that the funding is gone. Unwilling to complain for fear of retribution
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Low/limited English, no funds in plans for interpreters
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CALD families require an initial intense level of support to build capacity and confidence
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A cultural lack of trust of government agencies
LAC’s do not have time for plan implementation or experience. AASS frequently receive calls from NDIS and LAC offices for advice and/or to manage complex cases
The establishment of the Advisory Group ✓ Many of the groups on the advisory reflects the NDIA’s commitment to working with group were represented when the DSM key stakeholders and experts who support V was released. The issue of Autism people with autism. diagnosis was already discussed here and agreed to so there is a general approach According to correspondence from a Member of to diagnosing and understanding of the Parliament: disorder. Why reinvent the wheel?? ✓ Communication with other Government Among the issues the Advisory Group will be departments such as Social Services, asked to discuss are: Department of Education and Health who
• The increased prevalence of autism are already collecting data on Autism.
within the Australian population, as ✓ Speak with grass roots organizations who
reported by the Australian Bureau of speak to participants and fully Statistics; understand their frustrations and needs.
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The work, funded by the NDIA, but undertaken independently by the Autism CRC to develop a set of best-practice diagnostic guidelines. This work has been submitted to the National Health and Medical Research Council for review;
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The relevance of the new PEDI-CAT (ASD) as a functional assessment tool in the Australian context;
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The NDIA’s proposal, as part of its Participant Pathway work, for an independent third party to undertake a pilot to assess which functional assessment tools are most appropriate to
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assist making eligibility assessments for the NDIS. There will be no cost to individual’s seeking access to the scheme from the proposed pilot;
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Whether functional assessment tools can assist with defining the necessary supports for participants to have a better life;
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The best approach to delivering autism services for eligible NDIS participants and children who receive ECEI services, within the context of broader mainstream autism services.
The NDIA is committed to ensuring the NDIS is equitable, outcomes focused and, in the interests of all participants, financially sustainable.
With the prevalence of Autism increasing exponentially why were none of these issues discussed prior to the NDIS roll out? It seems the issue is financial sustainability which is common sense, yet the disparity is nonsensical. Families living in areas like south west Sydney have multiple layers of complexity in accessing the NDIS.
Access to Plans on Portal is of limited use to ✓ Where participant grants permission
providers (goals only). (during the planning meetings or directly Providers need access to knowledge of plan, such to NDIS), more relevant information as how funds are managed (agency/self/plan), should be available to be viewed by the breakup of funding allocation and the provider on the portal. amount of funding available in different categories.
Plans end before the plan end date with no ✓ Start new plans at the due date for the
notification to providers. end of the old plan where possible.
This ends our service bookings prematurely and ✓ All agency changes made to a provider’s
causes additional administration when our claims service booking should be notified to the are rejected. service provider (either via automated If the new plan does not cover existing services email to provider or a message in the that are in place, providers risk not being paid for portal). services that they had agreed to with the participant under the old plan.
No communication around tracking a plan. ✓ Access to tracking information via the
Where a plan is due for its annual review or an portal would be helpful and save the unscheduled review is submitted, providers and agency a lot of phone calls. participants are not kept informed of the
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progress. Many participants and their providers subsequently contact the NDIS to find out where the review is and how long it will be till it is finalized. This causes much work for NDIS as well as participants and the providers who assist them.
NDIS plans for CALD participants are difficult to ✓ Issue plan in relevant language
understand. Most participants from a CALD ✓ Fund a translator in the plan along with
background do not understand their plans nor all support coordination to ensure of their options regarding the NDIS. participants and families fully understand then plan.
Changes in Behavior Support under the quality ✓ More therapists trained in writing and
safeguarding framework. implementing behavior support plans, in All behavior support practitioners are expected particular for complex participants.
to source behavior implementers with no ✓ Better awareness in Universities for this
additional funding. This is not financially sector with a minimum of 36 months sustainable and the sector will be left with a practical work. larger gap in this support category as current providers refuse to work within this category. Currently in south west Sydney there are only 4 service providers offering this service. Waiting lists are long for each organization (in excess of 8 months) If a participant accesses supports by a service provider, and that participant has a behavior support plan with a restrictive practice, all service providers to the participant MUST report to the NDIS monthly to the quality safeguard. This reporting is not funded in the participants plan.
NDIS Telephone assistance – staff are ✓ Regular and consistent training for staff
inconsistent in their advice and the information on the phones to resolve issues at the they will divulge in relation to participants. time of the call.
Service providers rarely are able to resolve an ✓ Clear guidelines for NDIS staff as to what
issue on the phone. information they can or can’t share with There seems to be inconsistent notes placed on providers and make providers aware of participant files when providers call NDIS to this as well.
action or expedite reviews or other issues on ✓ Issue reference numbers for calls.
behalf of the client. At times there is no record kept of issues reported. Some NDIS staff are reluctant to give their names and will not issue call reference numbers. There appears to be a lack of accountability in this regard.
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Provider Payments emails for assistance in ✓ Allow providers to make changes to their
making changes to existing service bookings are own service bookings on the Provider incredibly slow and unresponsive. We have Portal. These changes would include average wait times of up to 4 weeks, and that is changes to booking dates and booking when we send reminders to chase a response. amounts.
This provides an unreasonable burden on service ✓ Allow call centre staff the ability to make
providers administering the NDIS. these changes.
NDIS slow response to change of circumstances. ✓ NDIS to have a section for emergency
The NDIS can take an extraordinary amount of calls (see safety net issue)
time to respond to “change of circumstance” ✓ Reference number to be issued for ease
funding requests or funding requests outside of and efficiency of follow up. the plan. We have two such claims outstanding since September/October 2017 and cannot get a single reply to our many emails chasing the issues. One participant was suicidal. A change of circumstance form was submitted to the NDIS for emergency access to a psychiatrist. This took three months and many calls to the NDIS to action.
Portal limitations. The portal only allows manual ✓ Extend the amount of time that providers
claiming up to 90 days after the service is can claim on the portal manually to at rendered. However due to the delay in the least 6 months, or longer if the Provider Provider Payments Team correcting changes in Payments team does not respond in a service bookings, by the time it is fixed we can no timely manner. longer claim and then have to email Provider Payments again to make the claim for us. We have been waiting since 27/4/18 to fix a service booking on the portal and we finally had it fixed on 29/6/18, but we are now unable to claim it and will need to ask NDIS to manually process the claim for us.
Travel for therapy services is not funded in the ✓ Fund travel for therapy services where
NDIS plans. NDIS providers are able to charge up the client identifies the service is to 20 minutes for offsite therapy sessions. Part of provided in the natural environment.
offering a person centred approach to service, we ✓ Ensure travel funding is separated from
offer the choice of therapy as centre based therapy funding.
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therapy or in the natural environment. Travelling to the natural environment means travel charges will eat in to an already poorly funded plan.
Support Coordination Bookings made by Agency ✓ All agency created service booking should
Staff are not notified to service providers be notified to the service provider (either via automated email to provider or a message in the portal).
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