Submission to the Parliamentary Inquiry into
Provision of services under the NDIS Early Childhood Early
Intervention Approach
RDI Consultants Australia is an association representing and supporting RDI Certified Consultants and Trainees in Australia who provide the RDI® (Relationship Development Intervention) Program.
RDI is a cost – effective, research - guided intervention approach for remediating autism spectrum disorders. The program uses a parent - training model to help children learn skills like joint attention, social referencing, theory of mind, social reciprocity, and communication for experience sharing purposes. It is an evidence - based practice approach that makes use of a combination of the best available research and clinical expertise in treatment decisions (Twachtman - Cullen, 2009)
A study in the Lancet (Pickle et al, 2016) found firstly, evidence that intensive, parent-involved early intervention around social communication skills has benefits that last well into a child’s future. Second, it suggests that the path a child with ASD will walk is not a fixed one, and that early intervention matters. Third, and maybe most importantly, it indicates that parent involvement can make a huge difference in communication treatment outcomes. Relationship Development Intervention (RDI) embodies these principles.
a. The eligibility criteria for determining access to the ECEI pathway; Concerns: There is typically a time lag of 6 months or more between when children first present with difficulties and when a diagnosis is confirmed. Early intervention in this interim would be very valuable but currently, this time is lost as there is no funding. Diagnosis can be expensive for families on a limited family income. Parents are not aware that NDIS support is available based on functional impairment rather than diagnosis, if that is the case. Recommendations: Provide a temporary NDIS access for children with genuinely suspected diagnoses, to allow them access to intervention with a choice of service providers. Establish a diagnosis pathway with choice of service providers after appropriate referrals. Inform the families of the actual eligibility criteria in a more adequate way, rumours abound.
b. The service needs of NDIS participants receiving support under the ECEI pathway; Concerns: The Early Childhood Partners approach currently in place is resulting in difficulties involving delays of service, because of backlog and poorly informed or biased access partners.
‘The access partner determines the appropriate supports for the child and family’ (The NDIS ECEI) yet the NDIS seems at odds with the family centred approach held as primary by the NDIA. The lists of registered providers are very confusing and almost impossible for families who have access to them, to explore. Names of ECEI services that are not registered providers are not supplied to families. This is unfortunate for families and unfair to small intervention practices. Small private therapy services are not being utilized in the Early Childhood Partners plans which is leading to the families missing out on these specialised services and is also creating a huge loss of business for those involved. Despite the NDIA claim of a family focused approach, many children are being offered small group interventions, denying the opportunity for client-tailored, individualised intervention. Families receive different answers from different NDIS staff and cannot easily recontact individuals because of the anonymity policy, resulting in long delays in resolving problems. There does not appear to be consistent NDIS knowledge amongst NDIS staff. Recommendations: Alter the role of the Early Childhood Partners to a referral role similar to that used by the Autism Advisers within FaHCSIA. These Advisers offered brief support yet offered impartial lists of services within their local area. They therefore did not have a conflict of interest and were able to empower parents to make their own decisions. Local lists of all available supports should be available to all ECEI families. These should include all recognised therapy interventions in the area, e.g. RDI Address Early Childhood Partner conflict of interest promptly and efficiently. Increase NDIS staff available for phone and email contact and institute more effective and consistent training.
c. The timeframe in receiving services under the ECEI pathway; Concerns: In practice, families are finding long waits for actual therapeutic services. The Early Childhood Partners are not able to cope with the workload and so keep families on hold when they should be receiving early intervention. There are also waiting times for service depending on the urgency as judged by the Early Childhood Partner. This is not supported by research and is delaying intervention, creating more problems for the child Communication with the NDIS is fraught with delays. Messages are not answered, emails not returned, waiting lists are created, reviews take months. Recommendations: We recognise that this new system is experiencing difficulties but adjustments to the time frames with the families’ contact with NDIS must be improved and staff must be more accountable for the timely interactions with families. More suitably trained or qualified staff and better systems are required.
d. the adequacy of funding for services under the ECEI pathway; Concerns: Children are individuals not statistics. Their need for services varies despite their diagnosis. A one size fits all format ignores these principles. Parents take time to create a request that reflects their child’s needs yet they seem to be receiving funding according to a formula. This leaves some children underfunded and parents feeling unheard, and others over funded and trying to use it under the use it or lose it principle. In some states, e.g. NSW, state funds are being delayed and therefore some children are having to wait up to a year after diagnosis before receiving funding. This precious ECEI learning time is lost. Funding is being wasted on plan management services when many families are able to manage their own funds. The use of NGOs means that much funding is wasted on administration and middle management.
Recommendations: Encourage planners to look at the request for funds individually. Have them justify why they did not allocate requested funds. Adjust financial arrangements with states to allow children to receive services when they are diagnosed. Encourage self management of funding wherever possible. Encourage the use of small practice practitioners who do not have NGO expense overlays.
e. the costs associated with ECEI services, including costs in relation to initial diagnosis and testing for potential ECEI participants; Concerns: At present families need to fund diagnosis. This can cost $450 to $1500 and is a significant amount for which there is no funding. Delays in appropriate, client specific intervention because of a virtual one size fits all philosophy, delay therapeutic progress. Therapist delivered intervention has a large cost in man power. Many parents are encouraged not to self manage their funds, therefore requiring the extra expense of a third agent. Recommendations: Allow entry to NDIS when a diagnosis is suspected to assist with assessment costs and to provide intervention in a more timely manner. Eliminate or providing alternative paths to the initial NGO programs and use unbiased referral advisers, similar to the FaHCSIA advisers. Prioritise interventions where the parents learn how to guide their child to grow through daily interaction, rather than employing outsiders to work with their child. RDI is such a research based program. Encourage capable parents to self manage their funds, saving on the agent expenses and empowering the parents to have more control of their child’s intervention.
f. the evidence of the effectiveness of the ECEI Approach; Concerns: Some interventions now available through the NDIS do not use the latest research into Autism or ASD intervention. Latest research supports the earliest possible intervention (Whitehouse A.J., 2017, Pickle, N. et al, 2016), promoting the parent child relationship as the keystone to service delivery (Barfoot, J et al, 2017 Oono et al, 2013), video feedback instruction for parents, therapy in groups of two rather than larger Social Skills groups where extinction occurs over time (again? a reference). Many who offer intervention through the NDIS do not have specific training in working in the manner described in The National Guidelines for ECEI and so are offering less effective or outdated intervention. Recommendations: Prioritise the recommendation for developmental, individual, parent facilitated interventions that do address the requirements set out in The National Guidelines for ECEI. Relationship Development Intervention (RDI) encompasses these elements. RDI is also seen by Prior and Roberts, 2012 in the document they produced for the NDIA as a valuable and eligible program for the NDIA, based on emerging evidence and principles of best practice.
g. the robustness of the data required to identify and deliver services to participants under the ECEI; Concerns: Autism is classified under levels 1, 2, and 3 with funding evidently allocated according to the level. This is not a published guideline yet is spoken about at times, by those in the NDIS. Exceptions are sometimes made with huge discrepancies and no good explanation, leaving other
parents bewildered and frustrated. The lack of transparency around decision making by the system does not take into account the needs of the individual child. Children who present with ‘high functioning’ Autism are perceived by NDIS as having few problems. Research shows that this is an incorrect belief. Many of those that group will develop marked problems with their autism later in teir development as they begin to see they do not fit easily into society. Results are high anxiety, poor job prospects, poor marriage prospects, limited friends, legal issues, disability pension likely. These children can be sidelined now but society, and those children, will pay later Recommendations: Train and support NDIS staff to truly understand each child’s abilities and circumstances and allocate appropriate funds or provide real explanations for denials or underfunding. Provide individualised intervention for children who appear to be high functioning to prevent later cost to all.
h. the adequacy of information for potential ECEI participants and other stakeholders; Concerns: In ECEI, participants’ therapy needs are ‘decided’ by the Early Childhood Partners (NGOs) thus discouraging the participants to explore intervention possibilities themselves and take the lead in their child’s intervention. The people making intervention decisions on behalf of the NDIS often lack appropriate and adequate training. Lists of Providers are available but they are large and not organised for easy reference. They do not include information about the expertise within each service. Nor do they include the non registered providers who have a strong history of providing services to this sector. Recommendations: Create more localised lists of providers within smaller areas, e.g. Northern Suburbs, which include registered and non-registered providers who can be funded through the NDIS. Organise these lists into profession or service categories. A large, but better organised list should be available for rural and remote familes. Provide adequate training to those in decision making positions. Recognise that parents are often the most informed advocates for their children. Include RDI as a category in these lists.
i. the accessibility of the ECEI Approach, including in rural and remote areas; Concerns: The relationships between participants or their families and the NDIS can become soured with the participants unsupported by the bureaucracy and feeling disempowered. This restricts easy access. It is difficult to service clients in rural and remote areas where intervention is often limited or not available on the ground. Recommendations: Train NDIS staff to respect participants and their families and make lines of communication more open and less secretive. If differences do occur, ensure systems allow for timely, mutually informed and respectful resolution. Relationship Development Intervention (RDI) has been delivered to families in rural and remote areas such as Western Queensland and Northern South Australia for at least 10 years. Because RDI Consultants guide parents rather than work directly with the child with Autism, teletherapy can provide good intervention under these difficult circumstances. A small Rural and Remote subsidy could be used for a very occasional on site appointment.
j. the principle of choice of ECEI providers; Concerns: Denial of choice - The system of the Early Childhood Partner being the first point of referral for families, providing information and initial supports can lead to the family not realising they have provider choice. It also allows the Partners undue influence with provider choice, since they are, themselves providers. Under HCWA & Better Start, with an unbiased referral system, a large pool of independent providers, offering valuable, evidence based support to children was created. Under the NDIS, these providers are being sidelined by the NDIS and the Early Childhood Partners. Rather than ‘supporting the emergence of a new disability market’ as NDIS aims to do, we are seeing the demise of these independents. These businesses are folding. A result of this Early Childhood Partner system is that families are seen by staff of the NGOs, very often inexperienced new graduate staff. Senior providers have generally joined the private sector and so clients are missing out on engaging with these most experience providers. ‘The NDIA would like to see the emergence of a new disability market with a diverse array of providers that maximises choice and control for participants’ (Provider Tool Kit Module 1). The system as it now stands for ECEI blatantly does not achieve this. Recommendations: Establish a system where the initial point of referral is not connected to a group that provides services. An independent person could thus inform families of possible providers and support them in making choices that best suit their circumstances rather than those of the worker’s employing body. HCWA and Better Start both have referral services that offer unbiased guidance to families. Ensure that all clients have access to information about all relevant service providers in both the private and NGO sectors. This should be presented in a clear and simple manner. Unbiased assistance should be available to understand this information.
Allow referral to individual providers. It is best practice for private therapists who themselves
are not officially part of a multi-disciplinary team, to work with other providers in the community when this is necessary. This was found to be so in FaHCSIA who abandoned the need for multidisciplinary teams. Choice of providers is a very significant point and we suggest that monitoring take place to investigate the distribution of referrals within ECEI NDIS over time.
k. the application of current research and innovation in the identification of conditions covered by the ECEI Approach, and in the delivery of ECEI services; Concerns: The ECEI research Approach document outlines a number of principles that are not being observed in general practice: “Research has shown providing children and families with timely, comprehensive and well integrated early intervention support leads to better, longer term outcomes for children.” As mentioned previously, this is not happening as many families find themselves on hold in a queue while waiting for Early Childhood Partner vacancies. “The common theme in these research pieces is that a family-centred model of practice and timely, well-integrated early intervention does promote optimal individual outcomes.” Again, the problem of timing and that NGO interventions are rarely family-centred. “The need for a child’s early intervention supports to be evidence-based and delivered using a family-centred approach which incorporated individualised planning to achieve positive outcomes.” We question whether the early intervention offered by the NGOs is evidence based or more a convenient combination of what they can offer, which, therefore, is not evidence based. Also, behavioural programs are no longer seen as best practice in ASD and these techniques are widely used by the less informed services.
“The NDIA will closely monitor service provider performance and outcomes to ensure all children receive the appropriate quality and level of support.” Is this possible? Outcomes in areas such as Autism is notoriously difficult to measure reliably. “With an emphasis on inclusion, each child will be supported in a range of mainstream settings, such as preschool, play group and other early childhood settings. This gives them an increased opportunity to learn and develop positive relationships.” Is this backed by good evidence? “A child who requires more intensive intervention support services will get a plan of supports and each family will be able to choose a provider(s) to best meet their child and their own needs.” Many families do not know they have a choice and follow the lead of the Early Childhood Partner. In NSW the choices are between the NGOs, not the broader provider community. Referral to Community Health is unrealistic as they already have hopelessly long waiting lists. Recommendations: To provide services within the boundaries of current best practice, the NDIS must: Ensure all those entering NDIS are well informed of their right to choose and supported to make their own decisions. Ensure the Program Advisor guiding the family is not conflicted so must be independent of any therapy services. Ensure every child is seen as an individual who is entitled to a program designed specifically for them, not being simply offered community participation in groups (Wetherby, A.M., 2014). Ensure that children are not ‘parked’ in intervention groups which have been shown to be of little value, especially for children with ASD.
l. Any other related matters. Concerns: A large number of small or individual therapy practices were meeting the demand for disability therapy prior to the NDIS, with some support from NGOs. NGOs, however, were generally not the workers supporting the families. These private practitioners, Occupational Therapist, Psychologists, Speech Pathologists, Specialised teachers and RDI Consultants, worked with families as their key support worker but sharing the responsibility with the empowered parents. Unfortunately with the NDIS directing families to the NGOs, these providers are finding their caseloads are drastically diminishing. We are heading towards a crisis in the disability therapy field because this artificial adjustment created by the NDIS is forcing experienced therapists to close or downsize their practices. These therapists have specialised skills in providing research based, best practice intervention developed over many years. They are seniors in their professions. It would be tragic if they were lost and replaced by young, inexperienced therapists who tend to work for the NGOs. Recommendations: Modify the ECEI scheme so that experienced private therapists are in a better position to offer their services to these challenging clients. Establish a general referral system, like the HCWA Autism Advisers, who can work with client families in an unbiased yet skilled manner. Understand that big organisations are not necessarily better. They often offer more generalised services whereas small practices are in a much better position to address and support individual needs.