Improving supports and services for autistic individuals under the NDIS | External submission

June 2023

Australian Parliament

Joint Standing Committee on the Nation Disability Insurance Scheme

June 2023

Executive summary:

Autism SA was founded in 1964 by autistic individuals and their families to ensure that people in the community had access to the best information, education and support. The organisation advocated for acceptance and understanding of autism and encouraged research and leadership in the community.

Autism SA was the first organisation of its kind in Australia.

Since its beginnings, Autism SA has focused on empowering the autism community and has been at the forefront of service development and advocacy. The organisation has a long and rich history of being a recognised leader in providing services and supports to people on the autism spectrum, their families, and the broader community.

Autism SA has over 20,000 registered individuals on the autism spectrum and prides itself on a strong values-driven culture of empowering autistic people. Our team provide a range of services and supports to individuals, their families, as well as associated professionals and organisations. Our team operates from various locations including clinics, in-home, the wider community and in schools.

Autism SA remains true to its foundations, always putting our clients at the centre of everything we do and empowering people on the spectrum to live the life they choose. Autism SA continues to redesign and evolve how we operate to ensure that we are meeting the needs of the community. As an organisation, we partner with the community to identify gaps in services, supports or policies so we can advocate for change. We support and encourage activities that build an inclusive society through our Autism Friendly Charter, providing businesses with free, online training to build confidence to support inclusion and accessibility for the autism community.

We inspire a culture of engaged passionate staff who are connected to our vision, mission and values to ensure that we deliver quality services and supports to our clients.

We strive to ensure our activities are sustainable and meet our high standards for service quality and ethical practice and generate positive, person-centred outcomes for individuals, families, carers, and others supporting our community. Respecting and protecting people’s human rights is at the centre of our decision making. Autism SA advocates for policy change locally and nationally. Autism SA is a member of the Autism Education Advisory Group, the Australian Autism Alliance and a Board member of the Australian Advisory Board on Autism, with representation on the NDIA Autism Advisory Board.

Being a strong representative voice for the autistic and autism community is the reason we exist.

June 2023

Major milestones in the history of Autism SA include:

First National Conference on autism in 1967
First national federation of service providers specialising in autism in 1969
Operated the first autism-specific school in South Australia, opening doors to students on the spectrum in 1974
Published the first autism journal in 1979
First with specialised employment services
Developed the first recognition awards in 2007 to celebrate achievements within the autism community, which evolved into a national program
Researched and developed the iModeling™ App and iMsocial Program in 2009
Initiated the first national Future Leaders Program to involve and engage people on the spectrum as part of the 2013 Asia Pacific Autism Conference
Developed and launched Australia’s first Autism Friendly Charter, including a website and app in 2016 to build friendly business and workplace environments
Developed the Autism Conference Series in 2017
Developed and launched The Spectrum website, a resource to support any person at any life stage on their autism journey in 2019
Developed and launched the online Autistics’ Guide to Adulthood, co-designed with autistic individuals in 2023

Autism SA provides a range of quality services and supports accessible through NDIS funding. It is an innovative organisation which follows evidence-based practice, to individuals across their lifespan. Autism SA also supports families, and professionals in a range of locations, including clinic, in-home, and schools.

Autism SA aims to improve life outcomes for people on the autism spectrum by providing and facilitating the very best information, connections, expertise, education, services, and support. The organisation is a strong representative voice for people in our community.

Our services include therapy, consultation, training, diagnostic assessments, recreation, and accommodation, as well as providing information and support for the wider community.

Autism SA has over 21,000 registered clients that access a range of supports and services across South Australia. Autism SA registers on average around 2000 clients per a year.

June 2023

The ages of the individuals accessing supports and services are between 1 and 84 years of age, are of diverse genders, and from across metropolitan, rural and remote locations.

Autism SA and the NDIS:

Autism SA is the peak autism body of South Australia. We work with the Autistic, autism and Autism SA communities to identify areas of concern and offer a strong representative voice to influence at a state and national level.

As a service provider, Autism SA provides a broad range of services at supports through various funding models including the NDIS. These NDIS funded services include support coordination, therapeutic supports, community access and participation, and home and living supports. Autism SA’s submission is based on our position as the peak body for autism in South Australia and as a service provider who have been involved in the NDIS since its inception and roll out as a trial site when the scheme began.

Autism SA recommends the The Committee seek specific, meaningful consultation directly with a diverse range of stakeholders from across the Autistic community to identify issues and formulate recommendations to improve the implementation and performance of the NDIS.

June 2023

Summary of Autism SA recommendations:

Recommendation 1: Recognise autism as a lifelong condition and do not require people to get re-diagnosed to access the scheme.

Recommendation 2: Identify individuals’ support needs instead of using DSM5 Severity Levels inappropriately to dictate a cookie-cutter funding model.

Recommendation 3: Reduce barriers to accessibility to the scheme by streamlining the Access to Request Form, supporting culturally and linguistically diverse (CALD), Aboriginal and Torres Strait Islander (ATSI), and people with disabilities, and supporting IT resourcing and computer literacy.

Recommendation 4: Recognise that having a job or living independently does not mean that a person does not need ongoing supports and services to maintain these achievements, or that support, and services are not needed in other areas of a person’s life.

Recommendation 5: Provide proactive support coordination to help people execute plans effectively, rather than relying on adults’ parents to step into this role or no one at all.

Recommendation 6: Better support Local Area Coordinators (LAC) and staff to develop plans that reflect individuals’ needs, guided by clinical care, by providing proper training, mentoring, and supervision to eliminate cold calling, using stock standard templates, missing information, or plans that do not reflect the person’s needs at that point in their life.

Recommendation 7: Notify key service providers when a new plan is developed to avoid unclaimable services, rather than relying on the participant to do so who may not be aware themselves.

Recommendation 8: Ensure that LACs and NDIA staff have clear guidelines that are consistently communicated to participants, service providers, and the public to eliminate frustration around confusing or contradictory information.

Recommendation 9: Incentivise service providers’ registration to NDIS to support accountability across the sector and improve the quality of supports and services that Participants receive.

Recommendation 10: Recognise clinical expertise when developing and reviewing plans, avoiding costly and unnecessary Functional Capacity Assessments.

Recommendation 11: Work with the Health and Mental Health sectors to provide clear pathways to supports and services not provided by the NDIS to support people holistically.

June 2023

Recommendation 12: Review the funding allocated to Group Support to recognise the resourcing required to provide this type of service to support choice, control, and associate outcomes.

Recommendation 13: Provide further funding guidance around pricing and calculations that are common, such as when Short-Term Accommodation (STA) support starts partway through a weekday into a weekend.

Recommendation 14: Make funding more flexible and ensure participants are aware of this flexibility so that clinicians can guide support to respond to relevant priorities and needs.

June 2023

General Issues around implementation and performance of the NDIS:

Issue: NDIS reliance on formal diagnosis, and certain types of diagnosis, without clinical insight and understanding of disability or the impact of disability. Impact:

Lack of understanding of autism across differing presentations and support needs.
Lack of understanding when interpreting reports. Evidence: Funding which isn’t in line with recommendations or support needs. Recommendation: The system should put reliance on getting to know a person’s individual support needs, opposed to basing support needs solely on a diagnosis.

Issue: The use of DSM-5 Severity Levels determining level of funding. Impact: Participants not getting the supports and services that meet their specific needs. Evidence: Phone calls to Autism SA info line. Recommendation: Focus on the individual’s supports needs.

Issue: Diagnostic services conforming to the schemes system e.g., using checklists opposed to creating quality reports to meet the requirement of the NDIS. Impact: Parents/people not having a quality report. Evidence: Autism SA is aware of one provider using a Check List that aligns with what NDIS needs to get children onto the scheme quicker, opposed to doing quality diagnostic report which highlights a child’s support needs, strengths, skills etc. Recommendation: Upskill planners to interpret diagnostic and therapeutic reports rather than making clinicians conform with NDIS processes.

Issue: NDIS requesting reassessment for individuals diagnosed under DSM4 or even DSMIII-R or requesting reassessment of a DSM5 diagnosis to use Severity Ratings to allocate funding. Severity levels from DSM5 should not be used for funding purposes; they are supposed to be used by clinicians to track an individual’s support needs related to their autism characteristics at the time of diagnosis. Impact:

The diagnostic assessment process for autism is lengthy, stressful, and costly. Asking an individual to undergo a difficult and intrusive process that is not necessary is unreasonable. Waiting lists in Adelaide for diagnostic assessments are extremely long (well over 2 years for adults). It is a waste of the diagnosticians’ time to provide an unwarranted service to an individual and a waste of the individuals money.
Participants and potential participants not receiving timely intervention and support.

June 2023

Clinical practice and knowledge being undermined and dictated by bureaucracy. Evidence:

Multiple phone calls and email queries have been received from parents, adult clients, staff, and external professionals regarding LAC’s request for re-diagnosis.
Some participants have been told that their funding will not continue until they undergo another diagnostic assessment, even though they have an established diagnosis of a lifelong disability such as Autism Spectrum Disorder.
Regular monitoring and evaluation of an individual’s functioning levels, participation, and required supports, therapy, and intervention is necessary, but repeated reassessment to confirm their diagnosis of a lifelong condition is not required.
Participants diagnosed using DSMIV or DSMIII-R, or using DSM5 but whose severity levels in one or both domains are 1, have been asked to have another assessment, even though their diagnoses are recognized on List B as permanent conditions for which functional skills are variable.
Severity levels from DSM5 should not be used for funding purposes; they are supposed to be used by clinicians to track an individual’s support needs related to their autism characteristics at the time of diagnosis.
The levels give a recommendation for support needs, but the report should detail why an individual received the level they did and what the recommended support needs are.
The levels do not provide a complete understanding of an individual’s autism, and the information about the individual’s autism should be included in the reports. Recommendation: Recognise that autism is a lifelong condition, and that if a person has an autism diagnosis, regardless of when, at no point should they be required to get a re-diagnosis. NDIS should not use DSM5 severity levels to dictate funding or support needs.

Issue: LACs, early childhood partners and planners advising families of younger children who are about to age out of the early childhood pathway to ‘get an autism diagnoses’ to remain eligible for NDIS when there are no indicators that an autism assessment is warranted. Impact: Parents are referring to diagnostic services, waiting on extensive lists and spending large amounts of money for an assessment that is often not helpful. Evidence: Numerous referrals to Autism SA’s diagnostic team with little evidence of autism characteristics. Families sharing during the assessment process they were ‘told’ to get an autism assessment by their child’s planner/LAC as this was the only way to keep NDIS. Recommendation: Internal training for staff regarding when to make a referral and appropriate referral pathways. Return to functional capacity determining eligibility for NDIS.

June 2023

Issue: Access to services for clients who have additional barriers that impact capacity i.e., low SES, parents/guardians with their own disabilities. Impact:

Families have reduced capacity and then are unable to complete a RORD, CoC, AAT application
Reduced immediate and early access to support coordination, which then impacts access to other services e.g., therapy, groups
NDIS relying on advocates to support families however, advocacy services are minimal/have stopped accepting NDIS clients which is leaving vulnerable families unsupported Evidence: Direct request from NDIS for support coordination services for clients who have had access to capacity building funding for multiple years and have not used it. Recommendation: Early or standardised screening tool to identify at-risk families at the planning phase with the outcome being provision of proactive support coordination funding.

Issue: The Access Request Form is too long, complex, inconsistent, and daunting. Within the form, Section 2 specifically it indicates that medical evidence is required, however it does not make it clear that a diagnostic report is sufficient for this. Additionally, it has been reported that when a person calls the call centre to seek clarification on this, they are being told in some instances, that they do need additional medical evidence to the diagnostic report. Impact: People and parents become frustrated and overwhelmed by the access process, therefore don’t apply to the scheme even though they have significant support needs. Evidence: A call to the 1300 support number; a newly diagnosed adult waited around 6 months to apply for NDIS as the form was too overwhelming. They were worried about the cost to make another medical appointment to ask for section 2 on the Access Request Form to be completed. Recommendation: Streamline the Access Request Form- reduce the length, ensure it is Easy English and ensure the requirements are clear.

Issue: Support coordination is not being provided to individuals that require support coordination to execute their plan. Therefore, even if the participant is an adult, it is being passed on to parents, or in some situation no-one. Impact: This is placing the burden of managing their adult child’s plan when parents often do not want to take this on. In some circumstances, Autism SA is aware that the Participant is unable to manage their plan, but neither are their parents due to disability, passing etc. This means that the person, though has an adequate plan, are unable to get the supports and services required. This can then impact on their ability to get future supports as well.

June 2023

Evidence: Through phone call to the 1300 autism support number. Recommendation: Where a person received NDIS support but does not have the capacity or skills to manage and utilise the funding, allocate Support Coordination during the planning phase to ensure the onus does not fall to parents or in some situations, no one.

Issue: NDIS not recognising that adults that have a job or live independently need support to maintain these, or that there are other areas that a person may need support with. Impact: People that are employed or live independently do not get any supports and services, often leading to the living or employment arrangements breaking down. Evidence: Through phone call to the 1300 autism infoline number. Recommendation: Recognise that while a person may have a job or a place to live, that ongoing support or capacity building support may be required to maintain these situations or that other areas such need support.

Issue: Individuals receiving plans produced by LACs with other participants details that bear no relevance to their life or support needs appearing to be copy and paste errors. Impact: Having to go back and forth with the planner to ensure Plans are correct causing frustration and time delay in accessing services. Evidence: A parent reported that a child that was toilet trained, receiving a Plan that included continents support- was clearly a copy of someone else’s Plan where amendments to the name was made. Recommendation: Ensure that LAC are resourced to execute accurate and appropriate plans for each participant.

Issue: People being cold called to develop a Plan due to LAC having to meet KPI’s. Impact: People/parents not being prepared for the meeting, therefore, not clearly or fully articulating their needs. Evidence: Through phone call to the 1300 autism infoline number. Recommendation: Ensure that LAC are resourced to execute accurate and appropriate plans for participants.

Issue: People that have English as a second language (ESL) are not being supported to access or use NDIS Plans. Impact: An increase in the number of CALD participants not accessing the scheme or getting supports or services reflecting their needs.

June 2023

Evidence: As reported to the Autism SA 1300 infoline, an ESL person that was incontinent (16) was provided only with $500 for nappies, but no supports or services to develop skills around toileting. In communicating with the Participant, it was identified that they did ask for supports around capacity building, but this was not reflected in the Plan. Recommendation: Ensure that LAC are resourced to execute accurate and appropriate plans for participants.

Issue: People/parents not having access to the resources (phone, computer internet) needed to apply for the scheme, or not having the computer literacy to access the scheme. Impact: Participants that are particularly vulnerable because they have difficulty accessing other supports and services, are also excluded from accessing the scheme. Evidence: Through phone call to the 1300 autism support number. Recommendation: Provide resourcing that supports access and inclusion, including in rural and remote communities.

Issue: Lack of communication regarding plan reviews and plan implementation. Impact: Service providers overservice with a lack of knowledge that a new plan has been put in place, at times without this service being funded within the new plan- resulting in services not being funded or lengthy debt-collection processes. Services unaware of report requirements and unable to submit required evidence for unscheduled review meetings. Evidence: Clients being unaware of a new plan being put in place and funding being utilised without consideration for budget amounts. Regular debt collection for clients where plans end without warning. Recommendation: NDIS notifies service providers that participants are about to undergo reviews and when a new plan is issued.

Issue: Roll over plans not reflecting current ‘about me’ information and updating goals. Impact: Out of date information, goals are no longer relevant, Plan lacks direction therefore Participants are not being supported effectively. Evidence: Plan developed when individual was a child, and not updated. Recommendation: Allocate sufficient resourcing to develop Plans that reflect a person’s current support needs.

Issue: Intensity level not stated on many Plans.

June 2023

Impact: Calculations for Core supports may be inaccurate if a provider believes the client is high intensity, but they are funded at standard intensity support and there is no visibility of this. Shortfalls in service agreements. Evidence: NDIS plans detail high or standard in some Plans but not others. Recommendation: Ensure that there is consistency in listing intensity funded in Plan.

Issue: Inconsistency in information provided when calling the NDIS call centre. Impact: Different staff get a different answer when they call with the same question, which may result in confusion and someone following the wrong process. Evidence: Anecdotal. Recommendation: Ensure that staff are trained and have access to a source of clear and consistent information to provide to the public.

Issue: Proda logs user out frequently forcing user to login frequently which is inefficient and time consuming. Impact: Time consuming to continue logging in creating additional resource heavy administration Evidence: Web page times out after a few minutes. Recommendation: Allow providers to remain logged in or extend log in time to reflect more reasonably the time it takes to complete Proda administration tasks.

Issue: Sector not well regulated (90% unregistered) with a significant number of participants self-managed or agency managed and can go to any provider (that may not be regulated). Impact:

People are receiving poor quality of service.
Unethical bias under certain service providers.
Clients receiving support from staff who aren’t registered with their peak professional body.
Cost of service – can charge more than NDIS rate. Evidence:
Significant number of clients that are Self-Managed compared to those that are NDIS Managed.
Anecdotal information from clients/therapists regarding other professionals involved.
Reports to the NDIS Quality and Safeguards Commission / Professional bodies who were unable to act e.g., Adult Safeguarding Unit. Recommendation: More NDIS involvement with non-registered providers and subsidy for NDIS registered providers – what is the incentive for providers to be registered?

June 2023

Issue: No incentives for organisational cost to be a NDIS registered provider burdening already strained sector e.g., overheads, audits, training, Impact:

No difference to direct income from NDIS for services from registered vs non-registered providers
Staff retention (private practices and organisations with less overheads can pay therapists/staff higher salaries and provide more benefits)
Financially a benefit to be unregistered.
NDIS registered providers expect service delivery staff to complete a service delivery record, progress note, validate the session, provide session summaries if families aren’t physically in the session and provide a progress report with hours delivered to be compliant. Evidence: Autism SA Financial Statement Recommendation: NDIS registered providers to have some sort of incentive.

Issue: NDIS requesting specific services, without or against clinical guidance. Impact:

Clients receiving a plan with stated supports included, limiting their access to other services.
NDIS requesting yearly assessments (e.g., Functional Capacity Assessments) against the recommendation of the therapist and/or where there is an older and still relevant assessment in place- utilising funding which would be better utilised for direct support. Evidence:
Report requests from planners
Stated supports within Plans.
Planners not accepting relevant reports due to date stamp, regardless of accompanying letter to support. Recommendation: Plans should be able to be developed using therapists reports and recommendations, opposed to requesting re-diagnosis or Functional Capacity Assessments.

Issue: Provider payments- providers unable to claim for service where new plans have been developed, but the provider has not been made aware. Impact: Costly to the business to have debt collection. Service providers unable to claim for overservicing when plan reviews have occurred, and the service providers were not made aware of this. Evidence: Autism SA records. Recommendation: NDIS to notify key service providers when Plans are updated.

June 2023

Issue: Cap on charge rates for groups regardless of ratio makes providing groups which have evidence based positive outcomes for participants, unattractive to service providers. Impact: Current group costings (participants split into 1:1 rate) therefore additional work is required from staff + business to facilitate group programs including:

Screening clients for group eligibility
Contacting clients to offer and schedule the service
Service agreement development
Facilitate group
Additional progress notes
Additional invoicing, claiming
Additional debt collection when required
Match clients’ profiles to ensure therapeutic success Evidence: Business cases to run groups. Recommendation: Increase the rate allocated for group services.

Issue: Inadequate funding available in Plans, particularly for clients from low socio-economic backgrounds. Impact:

When inadequate, families need to spend lots of time and resources going to AAT to review the plan, which can take a year and be highly stressful for the family. It also relies on the family having a certain level of capacity, or supports already in place (an advocate, or support coordinators helping with admin)
Can be restrictive, e.g., ABA may be specifically recommended, and a high level of funding may be provided, but then other therapists are unable to use it. Evidence: Anecdotal. Recommendation: Plans should be developed based on an individual support’s needs, not on severity levels.

Issue: NDIS funding does not collaborate well with other government services, e.g., education and mental health Impact:

A disability may impact mental health or mental health challenges may be associated with a disability (e.g., autistic person experiencing depression due to social isolation)
NDIS won’t fund the support, but government mental health organisations/services also won’t fund the support as they believe the individual should use their NDIS funding to access support. Evidence: Anecdotal evidence through discussions at forums

June 2023

Recommendation: NDIS to improve their understanding of disability and clearly define scope of supports. If NDIS have a limited scope of supports, federal government and/or state governments to ensure supports can be provided.

Issue: STA pricing for part days is unclear. Impact: High admin burden doing calculations to ensure costs are covered for every scenario. Push back from support coordinators and plan managers if it doesn’t fit their idea on how it should be done. Evidence: STA is priced as a 24hr block of support for weekdays, Sat, Sun, Public holiday. When support starts/ends part way through the day it is unclear how much of the block should be charged. Recommendation: Guidance provided on how to charge part days e.g., divide rate by 24 and apply to actual hours, charge half the block etc.

Issue: Budget flexibility non-existent. Core for therapy and support coordination often run out before other funding. Impact: Clients have to stop services in one area and may have ample funding in another budget that isn’t being used. Detrimental to clients to stop services. Evidence: Anecdotal. Recommendation: Allow more flexibility to move funds between budgets.

Issue: Therapy budgets list hours allocated for SP/OT as a recommendation, but clients feel they are bound by this, don’t understand its flexible. Impact: Confusion for participant. Could lead to requesting services they don’t want. Evidence: NDIS plan sometimes lists hours allocated for each service. This is not ‘stated’ though. Recommendation: Make it clear that non-stated recommendations are only recommendations.

Issue: Breakdown of how funding values reached not detailed. Impact: If service providers go over budget, they can’t figure out why. Time is often spent recalculating to guess how they got there. Evidence: SIL clients being funded for NDIS hours and not SCHADS shift times so SA is over budget. Recommendation: Details provided on the breakdown of funding allocation.

June 2023

Conclusion:

According to recent studies, autism is a rapidly growing disability, and it is the primary type of disability that is supported by the National Disability Insurance Scheme (NDIS) in Australia. However, research highlights concerning disparities in the quality of life experienced by autistic individuals compared to non-autistic individuals in the country. Autistic adults have higher rates of unemployment, alarming mortality rates, and autistic adults and families also report feeling socially isolated.

These disparities have significant implications for society in terms of economic and social participation. To address these issues, there is a need for better support and services for autistic individuals to improve quality of life and increase social and economic participation.

The recommendations put forward by Autism SA emphasise the need for a more person-centred approach to supporting individuals on the autism spectrum under the NDIS. The recommendations aim to address the current barriers and disparities in accessing the scheme and to ensure that support and services are tailored to meet individuals’ specific and current needs. By implementing these recommendations, the NDIS can provide a more effective and efficient system that better supports autistic individuals to live the life they choose.

References:

Autism SA (2022). Autism SA Client Data Report. Autism SA

Australian Bureau of Statistics, 2018. Disability, Aging and Carers, Australia: Summary of Findings. [Online] Available at: https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release#:~:text=In%202018%20there%20were%204.4,years%20and%20over%20had%20disability.

Australian Catholic University, 2020. Summary of results from consultation survey, to inform a submission into the Federal Senate Select Committee on Autism. ACU.

Trollor, J., Srasuebkul, P., Florio, T., Lennox, N., & Foley, K.-R. (2018) Using big data to understand health and wellbeing, Part B: Mortality of people on the autism spectrum. Brisbane: Cooperative Research Centre for Living with Autism.