Z Level 10, 213 Miller Street, North Sydney NSW 2060
e PO Box 785, North Sydney NSW 2059
Carers NSW
Australia
17 July 2020
PO Box 6100
Parliament House
Canberra ACT 2600
Carers NSW wishes to thank the Select Committee on Autism for the opportunity to provide a submission in response to the Inquiry’s Terms of Reference. This brief submission will focus on the experiences of people with autism, their families and carers, highlighting key systemic issues within various government services, including the National Disability Insurance Scheme (NDIS) and the implications this has for people with autism to live meaningful and independent lives. Recommendations are embedded throughout this submission.
A carer is any individual who provides care and support to family member or friend with a disability, mental illness, drug and/or alcohol dependency, chronic condition, terminal illness or who is frail. Carers NSW is the peak non-government organisation for carers in New South Wales (NSW). Our vision is an Australia that values and supports all carers, and our goals are to:
e Bea leading carer organisation in which carers have confidence
e Actively promote carer recognition and support
e Actively support carers to navigate a changing service landscape that will be characterised by ongoing policy reform
e Promote connected community experiences and opportunities for carers that are inclusive of diverse carer groups
e Lead and advocate for carer-specific and carer inclusive policy making, research and service delivery
e Continue to be a quality-driven, responsive and carer-focused organisation
Thank you for accepting our submission. For further information, please contact Grace Cherrington,
Policy Officer
Yours sincerely,
Elena Katrakis
CEO
Carers NSW
Background
According to the 2018 Survey of Disability, Ageing and Carers (SDAC), there are approximately 205,500 people with autism in Australia.1 Data from the most recent NDIS Quarterly Report indicates that people with autism represent just over one third of all NDIS participants.2 Despite the high representation of people with autism in data and research, there is limited understanding of autism within the broader community, which often results in the development of policies and practices that do not adequately meet the needs of people with autism, their families and carers.
Carers NSW recognises that not all people with autism have family or friend carers in their lives, however evidence shows that many do.3 SDAC data demonstrates that most care and assistance with everyday tasks, self-care, mobility and communication, is provided by informal carers.4 Carers of people with autism often have intensive caring roles and significantly high levels of emotional distress, particularly when the person they care for is unable to access services and supports that meet their needs.
Carers are often highly in involved in navigating and coordinating services, supports and decision making with, or on behalf of, the person they care for. Many carers also play an integral role in facilitating the equal and meaningful social and economic participation of people with autism. As such, Carers NSW believes it is important to recognise family and friend carers as a key stakeholder in any policy reform that seeks to better support people with autism.
Adequacy and efficacy of the National Disability Insurance Scheme (NDIS)
Carers NSW recognises that the NDIS holds great potential to improve the lives of people with disability, their families and carers. Despite many participants indicating their satisfaction with the Scheme, Carers NSW continues to have a number of concerns, particularly in regards to access and eligibility as well as the provision of adequate funding and support. For carers of people with autism in particular, Carers NSW has heard that there has been significant challenges at each stage of engagement with the NDIS which has considerably impacted their care recipient’s access to necessary supports.
Access and eligibility
In several prior submissions on the NDIS, Carers NSW has “Our application for eligibility for our
raised concerns about the process of accessing the
son was denied. The medical advice Scheme, particularly in regards to participant eligibility and
and childhood allied health
its implications for families and carers. In a submission professional reports were considered responding to the implementation of the NDIS and the too old. We were advised to gain a
provision of disability services in NSW, Carers NSW
new diagnosis for autism under DSM reported that a large number of people with disability, their 5 (our son was diagnosed under DSM families and carers were found to be ineligible for the NDIS.5
- and reports from therapists.” This included people with mild to moderate disabilities such as Level 1 autism. - 2018 Carer Survey Respondent
Carers NSW continues to hear from carers that the person they care for is ineligible for the NDIS due to their diagnosed
1 Australian Bureau of Statistics (2019) Survey of Ageing, Disability and Carers 2018, TableBuilder Dataset. Australian Government, Canberra. Available online at: www.abs.gov.au
2 National Disability Insurance Agency, Quarterly Report 2019-20
3 SDAC (2019)
4 ABS Survey of Disability, Ageing and Carers: Summary of Findings 2018 5 Carers NSW (2018), submission to inquiry into the implementation of the National Disability Insurance Scheme (NDIS) and the provision of disability services in New South Wales (NSW).
level of disability or are unable to receive appropriate funding and support due to inadequate assessments. This often leads carers to either privately fund supports they would otherwise receive through the NDIS, at a significant personal cost, or provide informal care in their place, sometimes unsustainably.
Carers and other stakeholders have identified that a key barrier to people with mild to moderate disability accessing the NDIS is that local area coordinators (LACs) and NDIS planners are not always equipped with adequate skills and experience to make sound and fair judgements as to a person’s eligibility and support needs. Carers NSW has heard from many carers that the person they care for has been assessed at a level that is not reflective of their overall function and support needs, which has significant implications for the type of support they can access.
While participants and carers are entitled to challenge an NDIS decision, the review process is often incredibly time consuming and complex, which many carers feel ill-equipped to engage in, especially if they are unfamiliar with NDIS processes, have low literacy or are from a cultural and linguistically diverse (CALD) background. In addition, some people with disability, their families and carers have not been able to acquire and submit adequate documentation and ‘proof of disability’ due to lack of awareness of what is required among health professionals and the costs associated with obtaining evidence. In the Early Childhood Early Intervention (ECEI) context, Carers NSW has also heard from many carers about the approach’s limitations, especially in regards to eligibility, assessment and access to supports.
(recommendations \
e Policy changes be applied to clarify recurring eligibility barriers, particularly for people with mild to moderate disability like Level 1 autism
e Investment in education and training of NDIS workers to better understand people with autism and their diverse needs
e Additional support be provided to people with disability, their families and carers to prepare their evidence of disability.
Ne yy,
ECEI gaps and concerns
According to the most recent NDIS statistics, there are currently 5,500 children receiving support through the NDIS ECE! approach. The NDIS ECE! program is one of the most common pathways parents and carers may use to access support for their child or children who demonstrate early signs of developmental delay or disability.
Early Childhood Partners play a crucial role in identifying necessary supports that may be suitable for young children with developmental delay or disability and often an Early Childhood Assessment is undertaken to understand which services and supports are most appropriate. According to the NDIS website, an Early Childhood Partner may use a number of approaches to assess a child, including conversations with their parents and carers about key developmental milestones and observing their behaviour in the home or at an early childhood education centre. They may also suggest to parents and carers to have their child formally assessed by doctors, therapists and teachers to support in this assessment process.
It is important to recognise that many of these assessments are not bulk billed, and they often come at a significant cost to parents and carers. Assessments are often time consuming, further affecting parents and carers’ ability to balance work or other responsibilities. For parents and carers who are
unable to afford private assessments, this may affect their child’s Early Childhood Assessment, particularly if their child is demonstrating mild to moderate symptoms, in turn affecting the type of supports their child may receive. For carers who are based in regional and remote communities, costs associated with travel and accommodation may further inhibit their ability to have their child formally assessed by health care professionals.
Carers NSW would also like to highlight that Early Childhood Partners are not able to formally diagnose every child they assess, re-directing parents and carers to a GP or other health service. These services often have significant wait times, especially in areas where families are less likely to be able to self-fund private assessments, causing them to miss out on early intervention opportunities. Carers NSW would like to note that the NDIS has sought to facilitate greater access to NDIS funded assessments by expanding the Independent Assessment Pilot, which seeks to understand the functional capacity of the person with a disability to ensure they are able to access the right supports. However, due to growing concerns around COVID-19 the Pilot has been discontinued with no indication of when it may return.
In addition, while the ECEI approach provides parents and carers with financial support to access services, Carers NSW has heard from many parents and carers that this funding is inadequate, leading many to privately fund necessary therapies and interventions. Carers NSW has also heard that in some cases, children with autism with intensive needs would be better diverted straight to the NDIS by the Early Childhood Partner, instead of following the ECEI pathway, to enable greater funding for more intense supports, however this is not always done and therefore carers cannot access adequate funding through ECE] to meet therapy needs.
(recommendations:
e Provide parents and carers with financial support to undertake formalised assessments for their child
e Broaden the ECEI Partners to include GPS who are able to formally assess young children and make provisional assessment recommendations for future supports
e Liaise with state-based health systems to fill funding gaps within the NDIS i.e. streamlining child-specific services delivered by LHDs to provide consistent support
Ne y,
Experiences and interaction with the health system
While many people with autism are able to make decisions and communicate effectively regarding their own healthcare, significant barriers persist. As a result, many family members and carers play an integral role in supporting people with autism, particularly around supported decision making.® Research indicates that many people with autism and other cognitive disability experience poor communication from healthcare workers’ which often leads to being excluded from their consultations and appointments, in turn affecting their knowledge and understanding of their own health. People with autism and their carers have also identified that health professionals can lack sufficient knowledge about the needs of people with autism and hold negative attitudes towards them.® The inability of many health care professionals to effectively engage people with autism, their families and carers can lead to lower levels of health promotion and health screening, often resulting in a higher prevalence of unmet
® Carers NSW (2018) Carers NSW 2018 Carer Survey
7 AliA, Scior K, Ratti V, Strydom A, King M, Hassiotis A (2013) Discrimination and Other Barriers to Accessing Health Care: Perspectives of Patients with Mild and Moderate Intellectual Disability and Their Carers. PLoS ONE 8(8): €70855. https://doi.org/10.1371/journal.pone.0070855
8 Ali et al (2013)
medical needs and the greater need for family and carers to be closely involved in the coordination of the care recipient’s health care.
Furthermore, research and administrative data demonstrates that irrespective of support from family members or carers, people with conditions that involve decision making and communication impairments often fare worse than other patients in the health system, which is not always as responsive to their needs and preferences as it could be.?
Carers report to Carers NSW that health care professionals do not always communicate effectively or share adequate information with them or the person they care for. Respondents from the Carers NSW 2018 Carer Survey indicated their concerns regarding health care professionals communicating in a way that either they or the person they care for did not understand.‘® Similar experiences have been captured by international research with many people with autism and other cognitive disabilities and their carers reporting they had not been adequately informed about diagnoses, procedures and medication regimes.’’ For carers who are from CALD backgrounds, issues around communication are exacerbated, creating additional barriers for the person they care for in accessing necessary support and assistance.
People with autism often face significant challenges navigating and coordinating services due to the nature of their condition and the complexity of service interfaces between siloed sectors, particularly in the context of disability and health. Where formal services are not available to provide coordination of care, additional strain is also placed on carers to fill administrative gaps or to provide care at a higher level of intensity. Many carers have indicated their confusion and frustration regarding the complexities of both the disability and health system as well as their lack of coordination.
(recommendations:
e Investment in education and training of health care professionals to better engage people with cognitive disability, their families and carers
e Facilitate cross-sector collaboration with greater information sharing and care co ordination between disability and health sectors
e Commit additional funding to disability advocacy organisations to support carers with system navigation
Ne y,
Conclusion
The Select Committee’s Inquiry into Autism presents a valuable opportunity for people with Autism, their families and carers to be better understood and supported across various service settings. By ensuring that people with autism are adequately supported throughout their life course, allows them to live meaningful and independent lives in their community, in turn providing carers greater opportunities to share their caring role with other responsibilities.
° Chenoweth et al 2016
10 Cares NSW (2018) Carers NSW Carer Survey
11 Ali et al (2013)