Adequacy and accessibility of the Approach

5.1        This chapter explores adequacy of information and accessibility of the ECEI Approach.

Adequacy of information

5.2        Families and carers require accurate and accessible information to be able to make informed decisions about their child's early intervention.

5.3        Evidence received indicates widespread dissatisfaction with the quality of information currently available.[1] Submitters highlighted that information about the ECEI Approach is uncoordinated and can only be found through several sources, such as the NDIS Act, PITC Program Grant documentation, NDIS Price Guide, Operational Guidelines, and the NDIS website.[2]

5.4        The committee received feedback that even experienced staff working for specialist service providers are finding it difficult to locate relevant and definitive information.[3] Ms Michelle Crozier, NDIS Project Manager, Deaf Services Queensland, argued that information could be presented in a more user-friendly way:

I consider myself quite well versed in the NDIS. I do a lot of research, I address all our internal questions and I have an academic background in it, but I still cannot find information doing a simple google search on the website. It is incredibly frustrating. It requires that I read the operational guides or it requires that I find the bilateral agreements. It requires that I know all of those things quite intimately if I'm going to give a factual and correct answer to a participant who just wants something very basic. I find that an incredibly frustrating part of it. Yes, the information is there—I won't say it's not—but to actually interpret it, translate it, find it and deliver it to a participant who has no service literacy is an incredibly frustrating experience.[4]

5.5        Ms Natalie Rose, Manager, Advocacy and Engagement, Li-Ve Tasmania, argued that, for individuals who do not understand the system and are just reading the Agency's documents, 'it's probably not going to be enough'.[5]

Lack of overarching policy information

5.6        Submitters pointed out that information about the ECEI Approach is currently available through a range of sources. However, the information is fragmented and fails to provide an overarching explanation of how the ECEI Approach will support children with disability or developmental delay and their families.[6]

5.7        Submitters expressed concern that there is no uniform understanding of what Early Childhood Partners should be delivering as part of short-term interventions.[7]

5.8        At the public hearing in Sydney, Ms Kay Turner, Chief Executive Officer, SDN Children's Services, argued there needs to be discussion around how Partners should best use their short-term funds to support families:

...there have been different approaches to early intervention across the country. But there have been issues, as there are in human services, in demonstrating efficacy—which things lead to the outcomes? For very young children, development is happening anyway and young children are involved in families, so it is very hard to draw correlations between what is working and what isn't. The literature around best practice early intervention is available, but when we look at ECEI with the broad requirements and the very short-term interventions, I would say the evidence is not clear for consistency nationally about what those short-term interventions should be. There could be a range of selected processes. For New South Wales, for example, our funding envelope would have been around $6,000 per place. So to make a decision about what would work when you have, say, $1,500 per child needs to be a discussion.[8]

5.9        Peak body, Early Childhood Intervention Australia (ECIA), argued that the development of a national policy and guidelines for the Approach would improve procedural consistency across jurisdictions, provide clarity, improve response times, and reduce confusion.[9]

NDIS website

5.10      Submitters were critical of the NDIS website, and expressed a myriad of concerns; including that it lacks clear information about the ECEI Approach, is fragmented, unnavigable, has had documents changed or removed, and provides contradictory information.[10] According to the Victorian Autism Specific Early Learning and Care Centre, families across the spectrum are experiencing difficulty finding relevant information online.[11] Ms Dee Hofman-Nicholls, Director, Enhanced Health Therapy Services, encapsulated the criticism when she likened the Agency's website to a 'rabbit warren'.[12]

Suggestions for improvement

5.11      The Commonwealth Ombudsman argued that the NDIA could better manage the expectations of families, providers, and professionals involved in the ECEI Approach by improving its online material. The Ombudsman suggested the Agency publish information about the focus of the ECEI Approach, what can and can't be covered under the Scheme, why Plans may vary, the likely timeframe for receiving a Plan, and review rights.[13]

5.12      The Royal Children's Hospital submission suggested that information should be relevant to the child's age and difficulties, and provide links to related services, such as Medicare rebates and community services.^[14]

5.13      AMAZE argued that the website should provide cohort-specific information, for example, a dedicated autism section.[15] Similarly, Mr Brett Casey, Chief Executive Officer, Deaf Services Queensland, argued that information for the deaf community should be made available in Auslan:

If we're talking about the website and access to the plan, all of it is English based...there is no information...in Auslan. The NDIA recently, early this year, provided some information in Auslan, but we had the rollout start in July in Queensland last year and until recently there was no information available in Auslan. Even the information they do now have available is limited...'What is the NDIS?' and 'Accessing the NDIS' are very, very short videos that have been made publicly available. In terms of fairness and accessibility, deaf community members are so far behind in getting access to information...[16]

5.14      Noah's Ark argued that information about ECEI Partners should clarify the multiple roles they are undertaking, and provide information about the Partner's relationship with the community.[17]

5.15      Service providers argued that the website should also include information:

• for prospective providers interested in learning about the Scheme;
• on the model of intervention being implemented;
• to alert stakeholders about changes to policy and procedure;
• that is consistent with the 1800 line;
• on conflict of interest;
• on how Planning priority is determined; and
• provide timeframes for determining Access and Plan approvals.[18]

General practice

5.16      The Royal Australian College of General Practitioners (RACGP) stressed the importance of the role of General Practitioners (GPs) in the ECEI Approach. It highlighted that GPs are often the first to meet with families who have concerns about their child's development, and play a significant role as sources of information and advocacy, in the diagnostic process, referral to services, and managing associated health issues.[19]

5.17      The RACGP argued that the NDIS is currently underutilising this network of professionals. A recent poll conducted by the RACGP found that 93 per cent of respondents 'had little information to help facilitate NDIS requests' from families.[20]

5.18      Dr James Best, Member, Specific Interests Child and Young Person's Health Network, RACGP, told the committee that general practice was frustrated it had not had enough input during the development of the NDIS, which has made consistent communication with families difficult:

We really are a bit in the dark once we send people off to the NDIS to make an application, and we're frustrated that we don't have enough input into the process. It all seems a bit of a mystery once it goes over to the NDIS, and we certainly don't get any feedback, as well as not being integrated into the process.[21]

5.19      While Dr Best acknowledged that NDIS general practice fact sheets would assist in one respect, he argued that education programs targeting the role of GPs in the ECEI process would be of greater benefit to the sector. [22]

NDIA response

5.20      The Agency drew the committee's attention to its general communication efforts targeting GPs and other health professionals. For example: publications; information booths and presentations at GP conferences; advertisement on the Australian Medical Association's 2017 GP Year Planner; and an article in the December 2017 Good Practice magazine.

Committee view

NDIS website

5.21      The committee acknowledges that the NDIA has made efforts to publish a range of ECEI-related material on its website. However, it agrees with submitters that the quality of information currently available for families and carers could be improved. The committee is concerned by reports that even experienced personnel working in the sector are having difficulties locating relevant information.

5.22      The NDIA should ensure that information on the NDIS website is logically presented. All information should be clearly dated, indicate if it has been superceded, and identify related historical information. Information relevant to the ECEI Approach should consolidate information from multiple sources, and remove redundant and contradictory information. Tailored information should be provided for disability cohorts, such as Auslan and ASD. The Agency should incorporate submitters' suggestions for improvement, such as: providing a substantive explanation of the ECEI Approach, its purpose and focus, the role of Early Childhood Partners, why Plans may vary, Participants' review rights, and link to websites with relevant information for families.

Recommendation 17

5.23      The committee recommends that the NDIA consult and engage with key stakeholders to continually improve ECEI information on its website.

Information for GPs

5.24      GPs are often the first point of contact for families with concerns about their child's development, therefore the committee is of the view that particular attention should be given to information and resources for general practice.

5.25      The Agency's GP's Guide to the NDIS factsheet provides brief information regarding the general pathway, such as: how GPs can provide supporting evidence for an Access Request, and the process once a person is granted access to the Scheme.[23] However, it does not provide GPs with substantive information about the ECEI Approach.

5.26      The NDIA should harness the opportunity general practice offers as a source of information to families with concerns about their child's development. GPs should be provided with information about the ECEI Approach, the role of Early Childhood Partners, how eligibility is determined for children under the early intervention requirements, what supports and services might consist of, and be provided with details of the ECEI Partner arrangements in their Service Area.

Independent information

5.27      Submitters raised concerns that families of children with a disability or developmental delay can be overwhelmed by new information at a time when they are unsure what to look for.[24]

5.28       Professor Matthew Sanders, Professor of Clinical Psychology and Director, Parenting and Family Support Centre, University of Queensland, argued that more can be done to improve the ability of families and carers to exercise the principle of choice under the ECEI Approach. He drew the committee's attention to the current lack of independent information about evidence-based practices, and the evidence of their value to particular populations:

If we had a website where all evidence based practices that are pushed out there as having value to this population were accessible directly to parents as consumers, they could have a look at and get a feel for what the intervention involves, what their commitment is and what their requirement is. They could make judgements about whether they feel they have the capacity to engage in what's being required of them in the intervention...If you...inform the consumer better about the different products that are available and had some common lens through which to look at all of them...parents, with an adviser, could make a truly informed choice about whether it would be worthwhile to invest their time, effort, money and resources as an individual...[25]

5.29      Peak body, ECIA, advised that it is currently developing online modules to help families and service providers understand what best practice might mean,[26]  however, this does not address the absence of a consolidated, comprehensive hub of information from the NDIA about available practices and their substantiated benefit to certain cohorts.

Vulnerable cohorts

5.30      Submitters raised concerns that vulnerable families may be at risk of disadvantage under the ECEI Approach, as parental competence and advocacy skills can directly impact the level of funding allocated to a child. This in turn, can result in inconsistencies between the levels of funding allocated to families that can clearly communicate their child's needs and those that struggle to articulate the services required.[27]

5.31      Ms Maureen Fordyce, Manager, AMPARO Advocacy Inc, described the difficulty some vulnerable families can face:

We have an example of a family in Toowoomba with very complex needs and from a refugee background needing access to interpreters. They provided evidence from their local GP about their disability, and that evidence was inadequate, so the NDIA wrote to them and asked for further evidence. They couldn't read the letter and they had no-one in their lives to explain what was required, so they never responded within the time frame. So when we contacted them, they had to restart their application to the NDIS again. That is not uncommon, from our previous experience, with people trying to access services.[28]

5.32      During the committee's hearing in Melbourne, NDIA officials assured the committee that the role of the ECEI Partner, and individualisation of packages, is intended to mitigate potential inequity:

We are expecting our partners to be out in the community and to visit families and children in the home and natural settings...they can go into a home and get a really good understanding of what the informal supports are for the child, and if there is a need for some more supports, from a child and family support perspective. It's not actually around the family advocating...the package for the child in the first place, or how they target the supports for that family, should be geared to where the family is at, and in making sure that if there's additional supports required to address the needs of a child, that happens... the individualised package, or the planning and the support that will be targeted to what's required. So yes, a family that is more middle-class, and doesn't need more or other linkages to community or services—as, perhaps, a more vulnerable family would—that would look differently in that way.[29]

5.33      The Victorian Autism Specific Early Learning and Care Centre argued that establishing and funding advocacy support services for vulnerable ECEI families is an essential safeguarding framework that must be built into the NDIS.[30]

5.34      The Royal Australasian College of Physicians argued that programs specifically designed to identify and support vulnerable families should be developed, and charged with identifying developmental delay and providing advice and referrals.[31]

5.35      Ms Teigan Leonard, Team Manager/Psychologist, Kalparrin Early Childhood Intervention Program Inc, argued that there is currently a lack of support for families:

I think it's also using an advocacy model to support the families, and that's certainly what we find families are looking for. Your planning meeting is challenging. You're talking about your child on their worst possible day and all of the things that you need help with as a parent. Some families have described it as throwing your child under the bus. Having an advocate there who can help you say what you're trying to say in a way that is meaningful and who can support you afterwards as well—I think that's the model that's needed in this sector.[32]

5.36      AMAZE recommended that a trusted, independent, and experienced organisation should be commissioned to develop resources about autism for a range of audiences in co-design with the NDIA, including autistic parents/carers, CALD communities, and Aboriginal and Torres Strait Islander populations to assist families in navigating the system.[33]

Committee view

5.37      The committee is of the view that ECEI Partners do not currently have the capacity or funding to conduct essential outreach and support services for vulnerable cohorts. The committee agrees with the Productivity Commission that adequately resourcing Information, Linkages and Capacity Building (ILC) is critical to ensure people with disability are connected with appropriate services.[34] Whether this is put in place through an advocacy model, or some other type of support model, the committee welcomes the Commission's recommendation that ILC funding should be increased throughout the NDIS transition phase. The committee considers that allocating specific funding for information and support for vulnerable families to connect with ECEI Partners through the ILC program is essential to the success of the ECEI Approach.

Recommendation 18

5.38      The committee recommends that the NDIA allocate specific funding for information and support for vulnerable families to connect with ECEI Partners through the ILC.

Accessibility of Approach

Aboriginal and Torres Strait Islander communities 

Absence of culturally sensitive pathways

5.39      There are concerns that the unique cultural circumstances of Aboriginal and Torres Strait Islander people are not being taken into consideration under the ECEI Approach.[35] For example, the Planning process does not account for flexible family and kinship arrangements,[36] and the design and use of assessment tools are inappropriate for Aboriginal and Torres Strait Islander communities.[37]

5.40      The committee heard evidence that the concept of 'disability' is not one that Aboriginal and Torres Strait Islander people readily identify with,[38] and there is often no equivalent term for 'disability' in many Aboriginal languages.[39]

5.41      The Queensland Government raised concerns that engaging one ECEI Partner for each geographical location may have a negative impact for Aboriginal and Torres Strait Islander children who require culturally appropriate supports.[40]

5.42      Submitters argued for improved cultural competency within the NDIA, and non-Indigenous providers, and for services to be tailored to meet the needs of Aboriginal and Torres Strait Islander people.[41]

5.43      ECIA highlighted that there are currently few incentives for service providers to actively show that they are able to respond to the needs of Aboriginal and Torres Strait Islander communities. It suggested that early intervention services should be required to incorporate cultural awareness training for staff.[42]

General accessibility concerns

5.44      In addition to specific cultural needs of Aboriginal and Torres Strait Islander communities, the remoteness of some communities means there is limited phone and internet coverage for access to the portal or the NDIA, and an ongoing lack of specialist services.[43]

5.45      The committee's attention was also drawn to the lack of sensitive, targeted material for Aboriginal and Torres Strait Islander populations. Following consultation with remote communities, the Commonwealth Ombudsman reported that many Aboriginal and Torres Strait Islander people are having difficulty understanding NDIA materials.[44] It found that many families who have received a Plan are often unsure how to use it to access supports and, as a result, many have not spent any funds during the 12-month period.[45]

5.46      Mr Mark Baigent, Chief Executive Officer, Kalparrin Early Childhood Intervention Program Inc, expressed similar concerns:

We are dealing with nine ATSI families at the moment within our organisation—not a significant number, but it's very hard work even getting that nine well connected. It's crucial that those families have a culturally sensitive pathway from the beginning to the end in terms of their interaction with the NDIS, and we are certainly aware of two families that are funded in excess of $25,000 per child with up to three children in each family involved under the NDIS. They've been holding their money for six months because they do not know how to enter the scheme, they do not know who is going to support them and they can't find culturally sensitive pathways, and their linkage from the scheme into the support regime hasn't been effectively handled. So there are gaps there that the ATSI families need support and help with to ensure that they're given the same opportunities as every other family.[46]

5.47      Submitters argued that information should be developed in co-design with communities, and delivered in a variety of languages to ensure that particular cohorts are not disadvantaged.[47]

NDIA response

5.48      In March 2017, the NDIA released its Aboriginal and Torres Strait Islander Engagement Strategy. The strategy was based on the experience of the trial sites and the expertise of the Aboriginal and Torres Strait Islander Reference Group and associated working groups. It outlines the Agency's commitment to working with Aboriginal and Torres Strait Islander peoples, and identifies 10 priority areas for engagement.[48]

5.49      The NDIA is currently working to develop tailored pathways for people from Aboriginal and Torres Strait Islander communities.[49] For example, it is developing culturally safe and responsive strategies to improve access to holistic allied health services for Aboriginal and Torres Strait Islander peoples with disability in collaboration with Indigenous Allied Health Australia.[50]

5.50      The Agency—with the Department of Premier and Cabinet and the Department of Social Services—is partnering with local communities to develop place-based models for the delivery of the NDIS. Projects are underway in Anangu Pitjantjatjara Yankunytjatjara; East Arnhem; Ceduna; Mornington and Doomadgee; and Western Sydney.[51]

5.51      The NDIA is also proposing to launch a grant round of ILC specifically targeted to rural and remote communities in the second half of 2017.[52]

Committee view

5.52      The committee is troubled by reports that there are Aboriginal and Torres Strait Islander families unable to use allocated funding because they are unsure how to access services. The committee agrees with submitters that investment in accessible information for a range of audiences is required. The committee considers that resources should be developed in co-design with people with disability, Aboriginal and Torres Strait Islander populations, and CALD communities to assist them to understand the Scheme, and how to use their funds to access services.

Recommendation 19

5.53      The committee recommends that the NDIA collaborate with people with disability, Aboriginal and Torres Strait Islander, and CALD communities, to co-design and develop accessible information about the Scheme, the ECEI Approach, and how to use funds to access services.

5.54      The work undertaken by the NDIA in developing an Aboriginal and Torres Strait Islander Engagement Strategy is a positive step. However, it is imperative that the NDIA develop a specific strategy to ensure that culturally appropriate early intervention services are delivered for this community by specialised staff.

Recommendation 20

5.55      The committee recommends that the NDIA develop a specific strategy to deliver culturally appropriate services for Aboriginal and Torres Strait Islander people under the ECEI Approach.

Hon Kevin Andrews MP
Chair

Senator Alex Gallacher
Deputy Chair

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