Submission 67 — Independent Advisory Council — Provision of services under the NDIS Early Childhood Early Intervention Approach | External submission

Independent Advisory Council of the NDIS

Submission to the Joint Standing Committee on the NDIS into the provision of services under the

NDIS Early Childhood Early Intervention

Approach

August 2017

Independent Advisory Council of the NDIS August 2017 1

Independent Advisory Council of the NDIS ……………………………………………………………… 1 August 2017 ……………………………………………………………………………………………………… 1 Synopsis …………………………………………………………………………………………………………… 3 The nature of best practice in the ECEI approach……………………………………………………… 3

Family ……………………………………………………………………………………………………………… 4
Inclusion…………………………………………………………………………………………………………… 4
Teamwork ………………………………………………………………………………………………………… 4
Universal Principles ……………………………………………………………………………………………. 4 Getting the balance between an ordinary life and a therapeutic life for very young children ………………………………………………………………………………………………………………………. 5 Lessons from the Helping Children with Autism (2008) and Better Start for Children with Disability (2011) programs …………………………………………………………………………………… 6 Capacity building for families of very young children………………………………………………… 7 More peer networks for families of very young children …………………………………………… 8 Build innovative service models for school age children: the future market …………………. 9

Independent Advisory Council of the NDIS August 2017 2

Synopsis

The Early Childhood Early Intervention (ECEI) approach is an important strategy through which the NDIS is working towards a nationally consistent approach for children with disability or delay in their development. Currently, early childhood intervention is delivered and funded in a wide variety of ways in each State and Territory with some approaches being more inclusive and community-based than others.

The ECEI approach is based on best practices and will be a mechanism to further promote evidence based approaches for children in this age group. Evidence based supports are critical for children and families in these early years as they lead to optimal outcomes. Providing best practice support in this age group also has positive implications for scheme sustainability as early intervention is an investment approach which will have long term benefits for a child, family and community.

For some children, it will be immediately clear that they meet eligibility criteria for entry into the NDIS. For others, the ECEI approach will ensure that they and their families will have early access to supports, connections to the community and to specialist and mainstream services. This will also provide the time to determine if the child will be eligible for entry into the NDIS and for the family to have access to information which will assist them to make good decisions.

For these foundation years to be fully effective, greater capacity building, more peer networks and the development of innovative new service models are needed in order to support the continued achievement of outcomes throughout childhood.

The nature of best practice in the ECEI approach

All children learn through relationships with the key people in their lives and through their participation in their everyday environments. The role of professionals has therefore changed to ensure that they focus on assisting change in these environments rather than directly providing services to children.

The principle of the ECEI approach is to provide families with information, expertise, supports and linkages to local specialist and mainstream community services so that children are supported to develop their capabilities to participate meaningfully in all aspects of their lives.

The ECEI approach aligns with the evidence based National Guideline for Best Practice in Early Childhood Intervention (ECIA) 1 which outline the following principles in the four quality areas:

1 National Guideline for Best Practice in Early Childhood Intervention, ECIA

https://www.ecia.org.au/documents/item/186

Independent Advisory Council of the NDIS August 2017 3

Family Family-centred and Strengths-based Practice: Families play a central role in the lives of very young children and the gold standard in early childhood intervention is family centred practice which works from the strengths of each family.

Culturally Responsive Practice: Professionals work in culturally competent ways, respecting each family’s unique circumstances while working flexibly in partnership with them.

Inclusion Inclusive and Participatory Practice: Every child has the right to participate in family and community life and this must be recognised as an important intervention strategy. Children may require supports to participate meaningfully in family, community and early childhood environments.

Engaging the Child in Natural Environments: Everyday routines and environments provide the most powerful opportunities for children to learn and develop and these should be utilised as the basis of intervention wherever possible.

Teamwork Collaborative Teamwork Practice: Families and professionals work in partnership together in a collaborative relationship with one team member nominated as the key worker.

Capacity-building Practice: Professionals work actively to build the knowledge, skills and abilities of the child, the family and any individuals who spend time with the child in order for the best outcomes to be achieved.

```
Universal Principles
```

Evidence base, Standards, Accountability and Practice: Professionals utilise evidence based intervention strategies and sound clinical reasoning when delivering their services in partnership with families.

Outcome-based Approach: Families work together with professionals to reach outcomes for the child, family and community.

A specific version of the guideline has been produced to support families to understand best practices.2

2 ECIA ‘Choosing Quality Early Childhood Intervention Services: What you need to know’. https://www.ecia.org.au/documents/item/282.

Independent Advisory Council of the NDIS August 2017 4

However, best practice is not implemented at a national level even though most service providers in the private, not for profit and government sectors support these guidelines in theory. Guidelines are a good first step, however promotion of these principles alone is insufficient to encourage system wide change so that service delivery in early childhood intervention is universally underpinned by these best practice guidelines. The ECEI approach is another way to send an important and clear message about the principles of early childhood intervention; however, new, additional strategies are needed to promote understanding and implementation at a national level.

Getting the balance between an ordinary life and a therapeutic life for very young children

When a child needs specialised assistance to complete everyday activities such as eating, drinking, walking, talking and engaging, families and the broader community expect that specialist support is required. This assistance can be delivered in a way that either supports the concept of an ordinary life or it can result in an individual and their family leading a therapeutic life. It is not uncommon for families to be so entrenched in a therapeutic life that they engage with multiple therapists each week in the belief that more hours of therapy will lead to better outcomes for their child. Family routines are disrupted as children are driven to multiple appointments by increasingly exhausted and stressed parents who strive to achieve outcomes for their child, in the belief that the time their child spends with the expert, will have the greatest impact.

Adults who reflect on the impact of leading a therapeutic life during childhood recognise on the one hand that whilst this may have provided positive outcomes to a degree, there were also the negative outcomes arising out of a life lived with constant therapy. Indeed, many families come to understand the negative experiences associated with maintaining intensive periods of therapy or intervention through the growing resistance from their child along with the growing impact of disruption and burn out on family life. Over time, there is often recognition that the outcomes sought through therapy could have been achieved by participating in everyday activities with the natural supports of community. However, this is often a lesson learnt too late.

Best practice in early childhood intervention highlights the value of therapy and educational supports embedded in natural environments, everyday routines, and participation in family and community life. Using best practice, an early childhood early intervention practitioner provides the ground work for all the individuals involved with the child in multiple environments, in order to implement the intervention. This promotes an ordinary life for the child and strengthens the overall functioning of the family as a whole so that they too, are supported to maintain an ordinary family life. These outcomes are also identified by the NDIS Outcomes Framework throughout the lifespan for both the child and family.

Independent Advisory Council of the NDIS August 2017 5

Lessons from the Helping Children with Autism (2008) and Better Start for Children with Disability (2011) programs

Moore (2012) describes the Helping Children with Autism and Better Start policy initiatives as well intentioned but ill-conceived given the list of concerns that have arisen from implementation. A key learning is that the funding has encouraged ‘a service-orientated conceptualisation of early childhood intervention, rather than an outcomes-based model.’3 The two initiatives focus on the provision of ‘direct services by therapists rather than working with and through those who are the major providers of the children’s learning environments’. 4

Moore hopes that this unhelpful emphasis will be addressed under the NDIS so that the principles of best practice in early childhood intervention will be supported. However, the practice of direct therapy with the child has become so ingrained that it is difficult to see how this can be challenged by best practice. Experience with the NDIS to date indicates that the focus on direct therapy provision to children is becoming increasingly entrenched and is setting the child and family on a pathway to a therapeutic life.

Models of funding which favour direct therapy over best practice promote a therapeutic life. On the other hand, best practice in early childhood intervention aims to ensure that families and other individuals in a child’s life, are supported to provide children with the functional skills to participate meaningfully in their everyday environments. There is recognition that the family is the constant in the child’s life and that it is in these natural environments that a child spends most of the time. Effective use of specialist supports works with these key individuals and in these natural settings through collaboration and partnership approaches.

Other key learning from these nationally funded early intervention programs include:

Lack of focus on outcomes by families and professionals;
Direct therapy is valued over time spent in planning and reflecting on progress in relation to goals;
Trends toward clinic based services as these are cheaper than services which are provided in the child’s natural environment of home, early childhood setting, school;
Increased imperative for diagnosis in order to obtain funding as the programs were limited to children with Autism or 6 diagnostic categories. This also led to

3 Moore, T.G. (2012). Rethinking early childhood intervention services: Implications for policy and

practice. Invited Pauline McGregor Memorial Address to the 10th Biennial National Early Childhood

Intervention Australia (ECIA) Conference and 1st Asia-Pacific Early Childhood Intervention

Conference 2012, 9th August, Perth, Western Australia. http://www.rch.org.au/uploadedFiles/Main/Content/ccch/profdev/ECIA_National_Conference_2012.pd f 4 Ibid

Independent Advisory Council of the NDIS August 2017 6

a delay in intervention during the period in which the diagnosis process took place as funding was only received after diagnosis;

Significant growth of therapy providers with insufficient quality control mechanisms to ensure best practice;
An inequitable system for the children who did not fit into these categories regardless of the level of disability they experienced;
One size fits all funding formula of $6,000 twice to be spent by age 7 years, regardless of time of diagnosis instead of an individual approach to funding based on functional need.

Capacity building for families of very young children

Capacity building initiatives for families of very young children are needed to assist families to:

understand the value of their own role in achieving outcomes for their child within an inclusive home and community environment;
develop the skills needed to work actively in partnership with professionals, so that resources are utilised carefully and effectively within the context of the child’s everyday routines and community.

At its best, good supports in early childhood build the capacity of the family to support their child’s development. Capacity building must be recognised and enhanced for families of young children. There are two ways capacity building for families should be provided:

Firstly, professionals in the ECEI and early childhood intervention (not for profit and for profit) sector must work in partnership with the family in ways that help them to understand the pivotal role they play, in comparison to relatively short amounts of time spent with specialist professionals. This is best practice but is not yet consistently implemented. Out-dated segregated models still exist and some providers still work using the expert model. Furthermore, many allied health practitioners operate in an expert model in response to several factors, one of which includes parent expectations that the therapist should take on most of the responsibility of the intervention, in the belief that they are the expert. Best practice guidelines must be promoted across the entire market of providers who support children and their families. This alone will not be sufficient to promote national consistency of best practice implementation and therefore, new mechanisms are needed to ensure quality is maintained in service delivery.

If family understanding of their role is not directly and systematically developed, they will continue to place higher priority on the expert model as being the most central strategy in early intervention thereby, underestimating the value of family and community.

Independent Advisory Council of the NDIS August 2017 7

Given the existing NDIS patterns of service usage for children birth to six years old and the experience of Helping Children with Autism and Better Start programs, the NDIS is at risk of reinforcing this systemic focus on the expert model in allied health as the major service for children while sidelining the evidence based approach to ECI in which the role of families is paramount.

Secondly, new capacity building initiatives must be stimulated. These should target families at the earliest possible time so that family expectations of their child’s capability is firmly planted before a deficit approach takes precedence. Such initiatives should include: positive vision setting to help families reframe the possibilities for an inclusive and valued life for their child; the value of informal supports; how to effectively use formal supports such as therapy; working effectively in partnership with professionals, and the value of peer networks.

Currently, there are very few structured educational programs which address capacity building for families of children 0-6 years and this area should be stimulated to produce innovation to ensure that a diversity in these models develop in the future. It is not clear yet how this new capacity building should be supported or funded. A range of options should be considered including the potential for ILC funding to specifically target this age group. Families are the constant in a child’s life particularly in the early years and they need the right information on which to base their current and future decisions. This is in the interest of the family along with the principles of an insurance based approach.

These new models of capacity building would recognise that the family themselves are engaged in their own process of understanding the long term benefits of their own role, and the role community plays, to reach outcomes for their child. Founded on strengths based and family-centred perspectives, new family capacity building approaches would start early and take a developmental approach, recognising that family understanding and learning is layered, takes place over time throughout the child’s life and is most influential in a peer environment.

More peer networks for families of very young children

Research shows that families value the support they receive from other families who are in the same situation. However, most families prioritise the needs of their chid during this time as they cannot yet see the value of connecting to other families. Therefore, more peer groups for families must be stimulated to provide a complimentary approach to ECEI. Peer groups are a mechanism to promote connection amongst families, share information and positive visions for the future.

Peer networks in early childhood intervention are under developed and underutilised as they have been difficult to develop for a range of reasons including the priority families place on assisting their child before themselves. Furthermore, peer groups typically self-organise of life.

Independent Advisory Council of the NDIS August 2017 8

New models of peer connection for families of very young children must be stimulated so that they are exposed to the collective capacity of other families. This will support the family to understand the importance of inclusion and transitions associated with childhood, adolescence and adulthood.

It is too late to introduce families to peer networks when their child is an adult. Peer groups for families of young children should start early and take a family leadership approach so that they have each other during their own developmental journey of building a good life for their child during these formative years. In this way, the early childhood years can be used as an opportunity to help shape higher expectations for children and families which in turn will have impact on the service sector in the future, as the demand for new models of service delivery grows with these families.

Build innovative service models for school age children: the future market

Innovation in the delivery of ECEI services, early childhood intervention services and of the market beyond early childhood into middle childhood, will be essential for the full potential of the NDIS to be realised. Innovation in service models for children aged 7 years and older is required so that families who have experienced the ECEI approach will continue to have access to new ways to achieve their child’s goals in the community.

Currently, there is an extremely limited service system for children 6 years and older and their families, and yet this is a critical age for children as they grow into adolescence. Children aged 7-14 years currently make up 44% of NDIS participants. The existing services models for this age group are predominantly allied health services along with some crisis services delivered by government and respite providers which offer predominantly congregated options.

It is critical that this market be addressed so that there is a vibrant service system which offers services based on achieving the outcomes of the NDIS including: independence, inclusion, and self-management for children in this age group. Innovation in this sector must be proactively stimulated so that children who are still eligible for the NDIS after ECEI will have a range of new contemporary models which are inclusive, community based, and outcomes focused and which will lead to the outcomes desired by the NDIS.

Independent Advisory Council of the NDIS August 2017 9