Phone: (03) 8559 2620 Email: admin@eciavic.org.au Website: www.eciavic.org.au
Early Childhood Intervention Australia Victoria /Tasmania
Submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) Inquiry into:
Planning
September 2019
Sarah Riches - Chief Executive Officer
Early Childhood Intervention Australia Victoria/Tasmania Limited
ABN: 61 830 423 920 | ACN: 617 517 423 1
Phone: (03) 8559 2620 Email: admin@eciavic.org.au Website: www.eciavic.org.au
Introduction and background
Early Childhood Intervention Australia Victoria/Tasmania (ECIA VIC/TAS) welcomes the opportunity to provide input to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) Inquiry into Planning. This submission will address key aspects from the perspective of the early childhood intervention sector.
ECIA VIC/TAS is the peak body for early childhood intervention in Victoria and Tasmania. We represent over 600 professionals and organisations providing specialised support and services for infants and young children with disability and/or developmental delay to promote development, well-being and community participation. Our vision is for young children of all abilities to fully participate in family and community life.
ECIA VIC/TAS members are early childhood intervention (ECI) professionals working in community organisations, disability services, specialist ECI organisations, children’s services agencies and government departments – all of which reflect the diverse ways in which services are provided to young children and their families.
Our members implement a best practice approach to early childhood intervention which is outlined in the National Guidelines for Best Practice in Early Childhood Intervention (ECIA 2016). A brief overview of ECI best practice is provided on page 8 of this submission.
ECIA VIC/TAS acknowledges the National Disability Insurance Agency (NDIA) for their ongoing commitment to best practice through the NDIS Early Childhood Early Intervention approach. There is genuine goodwill across the ECI sector and a real desire to collaborate with NDIA to help ensure that best practice is maintained.
However, it is becoming increasingly evident that the planning process is moving away from an evidence informed best practice model, in many cases, the nature of early childhood intervention being delivered is highly restricted: child-focused, therapy-driven, and disability-framed. The evidence overwhelming indicates that such forms of service provision is unlikely to achieve positive outcomes for the child and their family.
This submission addresses key issues as identified by ECIA VIC/TAS members and key stakeholders.
ABN: 61 830 423 920 | ACN: 617 517 423 2
Phone: (03) 8559 2620 Email: admin@eciavic.org.au Website: www.eciavic.org.au
NDIS Planning and Workforce
There is an expectation under the NDIS experienced and qualified Planners / Early Childhood Partners with strong local knowledge and an understanding of best practice early childhood intervention would provide planning support for children and families. This however is not evident across all rollout areas. The recruitment of a skilled and proficient workforce continues to be an issue across the Planners / Early Childhood Partners. It appears to be a common occurrence that the Planners / Early Childhood Partners are recruiting staff that are new graduates and therefore have limited experience in early childhood early intervention and best practice approaches. Families have also reported on the high instances of staff turnover within the Planners /Early Childhood Partners, this has resulting in the family’s ongoing need to re-establish relationships and to explain their personal circumstances time and time again.
Key areas of concerns: Clinical inexperience of Planners / Early Childhood Partners, they are expected to make critical decisions/advice around support needs after 1-2 hours with the family Plans devoid of family-centred practice and the Key Worker model Planners / Early Childhood Partners appear not have the skill base to support complex and vulnerable families There is an increasing concern regarding the NDIS eligibility criteria and how it is inconsistently interpreted across the Planner / Early Childhood Partners. There is a tension between having to ‘prove how bad the situation is’ rather than the social model of intervention Lack of pre-emptive planning before meeting with families – children’s reports not reviewed by Planners / Early Childhood Partners before meeting which results in repetitive questions asked of parents, confusion and delays
Recommendations: Provide ongoing and systematic mandatory professional learning in best practice ECI (particularly in relation to family-centred practice and the key worker model) for all Early Childhood Partners. This professional learning should be based on the ECIA National
Guidelines for Best Practice Early Childhood Intervention. ECIA VIC/TAS has developed Best
Practice in ECI professional development modules and advised NDIA and Early Childhood Partners that this is available and can be tailored for delivery to key staff. Establish pathways between Early Childhood Partners and the ECI sector to increase knowledge and understanding of best practice ECI and local area supports.
Clear and robust sector wide recruitment and retention strategies implemented. This would see the NDIA working with the sector, universities and TAFEs and peak bodies to develop a plan (including an ECI Competency Framework) that would be responsive to the future ongoing needs of the sector.
ABN: 61 830 423 920 | ACN: 617 517 423 3
Phone: (03) 8559 2620 Email: admin@eciavic.org.au Website: www.eciavic.org.au
NDIS Planning and Best Practice Principles
The Planning Process
Although early childhood intervention is ideally relational, the planning process is not conducive to the development of relationships between Planners / Early Childhood Partners and families. This is because there is no time to develop a genuine relationship (Planners often only meet with families once or twice), Planners / Early Childhood Partners do not generally follow-up or keep in contact with families to provide ongoing supports or information, and the high staff turnover with the Planners / Early Childhood Partners means that families often have a different planner at every planning meeting and review.
Planning meetings are mainly focused on the child’s deficits. Families are reporting that the onus is then to provide proof they have of their child’s ‘problems’ and ‘issues’, and the better they are at articulating this, the more likely they will be able to secure higher levels of funding.
The Plans
Plans are not family-focused and typically do not include any family related goals, including goals relating to building family capacity. The plans position families as only being the ones responsible for coordinating their child’s therapy needs. Plans rarely include outcomes for caregivers, siblings and more generally, the family as a unit. Overall families appear to be largely excluded in the ECEI approach.
Increasingly Plans do not address the need for early intervention to be delivered within the child natural learning environment. Instead, services are being delivered within the practitioner’s office/clinical setting (and not in the child’s home or early childhood setting). This is largely attributed to the fact that the Plans do not provide adequate funding for travel costs, and families are reluctant to spend “therapy money” on Early Intervention Provider’s travel costs.
With the move towards therapy-driven plans (as opposed to capacity building) has meant that the Key Worker model is much less likely to be chosen or incorporated in Plans. Planners / Early Childhood Partners are unable to articulate this model to families, as a result families no longer have access to an adequately experienced and qualified practitioner, whose role it is to advocate on behalf of the families behalf, who also has a deep understanding of the child and family and is able provide the much needed supports they require, particularly when learning how to navigate the very complex NDIS system.
Key areas of concern: Inequities continue to be identified in which many Plans indicating parents who are better able to advocate for their child’s needs or those who are supported through the process are receiving better supports and higher levels of funding
ABN: 61 830 423 920 | ACN: 617 517 423 4
Phone: (03) 8559 2620 Email: admin@eciavic.org.au Website: www.eciavic.org.au
Planners / Early Childhood Partners are using diagnostic assessment tools such as the PEDI CAT as planning aids. This tool is not appropriate for use with all children aged 0-6 years. Linking funding to the outcome of these assessments has meant that some children with disability and/or developmental delay who should be eligible for support are being removed from waiting lists with no funding Families are not receiving adequate independent information and advice to enable them to make the best choice about the range of appropriate supports and service providers for their children Families are not always given an opportunity to review Plans prior to approval. This has led to the development of inappropriate plans and contributed to the high incidence of Plan reviews There have been inconsistencies in Plans developed for young children. Some Plans have excluded support items required by families, others have included supports not requested or inappropriate. Issues have included: o inadequate communication between Planners / Early Childhood Partners and families o Families lack of understanding about appropriate support options o lack of clarity and guidance around the function, allocation and use of support coordination. Planners / Early Childhood Partners are under the misunderstanding that the Key Worker model is the same as support coordination.
Recommendations:
Early Intervention Practitioners together with Planners / Early Childhood Partners to work in partnership with families in relational manner to co-produce plans Plans are a comprehensive, holistic child and family Plan (that is built around strengths and self-identified aspirations) Explore a peer mentor model were a peer mentor could facilitate warm introductions to the planning process, services, community groups, events and activities The provision of clearer information for families about the process and timelines is shared Facilitated access to community and place-based local supports is afforded to all families Targeted and additional supports for complex and vulnerable families Further research to identify a more appropriate diagnostic tool to be embedded into the planning process. The implementation of a ‘stages and ages’ model that clearly differentiates children from their neuro-typical peers has been proposed as a better approach. The results of the PEDICAT are often not a true indication of a child’s functional needs
ABN: 61 830 423 920 | ACN: 617 517 423 5
Phone: (03) 8559 2620 Email: admin@eciavic.org.au Website: www.eciavic.org.au
Case study – A parent’s experience (written by a parent):
My Background
My daughter needs early childhood intervention and has significant delays in all critical areas of her development from motor, language and learning. She is a beautiful and happy child and we need to ensure that we give her the best possible future outcomes. I provided evidence from multiple doctors including a paediatrician, physiotherapist, neurologists and geneticist about her condition to the Early Childhood Partner and NDIS but still took us over 157 days to gain access to the NDIS.
Inexperience of Planners
As a parent you are attempting to build rapport and trust with a person who you know has very little or no experience in community health, disability, social work or allied health but rather has completed a two day course which now provides them with the authority to make life defining decisions about your child. This inexperience was comically evident when my first planner resigned without me even knowing (after leaving messages on her phone for 6 weeks) as nobody informed me. The second planner was so junior she required her manager to be present at the assessment meeting but a mere five weeks later was so senior at my daughter’s planning meeting she was now training a new planner. The issue is that this is not a joke, as the planner is the determining force in what level of early invention my daughter will receive.
Inappropriate Assessment
During the planning meeting, my planner conducted a PEDS assessment which from my understanding should only be conducted by a health professional. During this assessment, I thought I had to provide a yes or no answer but actually it was on a scale (emerging, sometimes, always, etc). This has dramatic impact as some skills she has completed once but not able to do consistency. Also, when the planner was questioned about a meaning of her questions and clarification she was unable to provide information as she was simply reading the questions from a script.
Waiting Times- Timeline
I began the process on the 28 November 2018 by contacting the local Early Childhood Partner and arrange the accessibility to the NDIS and was informed that there would be many months to wait for a meeting.
On 4 December, I had a phone referral asked questions about treating doctor, name, and details of parents and couple sentences of concerns regarding my child. I was informed
ABN: 61 830 423 920 | ACN: 617 517 423 6
Phone: (03) 8559 2620 Email: admin@eciavic.org.au Website: www.eciavic.org.au
that a Planner will call me in April/May to arrange a 1 hour appointment to discuss a possible NDIS plan and more detailed issues about my daughter’s needs.
A planner called and left a message about my child’s eligibility meeting in January.
Over the next six weeks, I called back and left a message on over ten occasions and never received a call back.
After six weeks, I was informed that the Planner had left the organisation and my file had not been handed over to another Planner.
I was able to speak to the manager at the Early Childhood Partner and she and the new planner attended the access meeting on 27 February. At the end of the session, they recommended that my daughter be put forward to NDIA to gain access. The NDIS received the eligibility request on 11 March 2019.
I have rung NDIA on 10 occasions after the stated 21 days to determine accessibility and each time have been informed that they can provide no time frames and my accessibility request was being processed.
I lodged a complaint on 15 April with the NDIS about the length of time taken to process her eligibility request.
My child was granted access on 3 May. Once she was granted access, the planning meeting occurred very quickly - in only two weeks and the plan was then approved within 48 hours.
ABN: 61 830 423 920 | ACN: 617 517 423 7
Phone: (03) 8559 2620 Email: admin@eciavic.org.au Website: www.eciavic.org.au
Early Childhood Intervention Best Practice - overview
Early childhood intervention (ECI) is the process of providing specialised support and services for infants and young children with disability and/or developmental delay and their families, in order to promote development, well-being and community participation. (ECIA 2016)
The primary focus of high-quality early childhood intervention is to optimise a child’s learning and development and their capacity to participate meaningfully in family and community life. To achieve the best possible outcomes for children aged birth to six years, a best practice approach to the delivery of early childhood intervention services is essential. It is critical that this best practice approach is clearly articulated, universally understood and fully funded.
Most children and families using early childhood intervention services have multiple needs, requiring the expertise of professionals from multiple disciplines. For such families, best practice in ECI involves the delivery of services through a single professional or key worker, with the collaborative support of an appropriately knowledgeable and professional team. The key worker provides therapeutic support and links the team around the child.
Services are provided in the child’s natural environment – at home, in daily routines, in the community, in early childhood education and care settings. Using best practice principles, ECI professionals build the capacity of the child, their family and professionals, including early childhood educators and others in the community, to facilitate inclusion in daily life and maximise the child’s learning and development. ECI professionals work respectfully with families from diverse backgrounds to achieve the outcomes they want for their child and family.
This approach to best practice ECI is based on extensive consultation within the ECI sector and on Australian and international research literature and is detailed in the National Guidelines for Best Practice in Early Childhood Intervention (ECIA 2016). In Victoria, these principles have been well understood and supported by the State Government through the Department of Education and Training. It is essential that this important work in best practice ECI is maintained and funded into the future.
Quality Area 1: Family
- Family-centred and strength-based
- Culturally responsive
Quality Area 2: Inclusion
- Inclusive and participatory
- Engages child in natural environments
Quality Area 3: Teamwork
- Collaborative
- Capacity building practice
Quality Area 4: Universal Principles
- Evidence based and accountable
- Outcome based ABN: 61 830 423 920 | ACN: 617 517 423 8
Phone: (03) 8559 2620 Email: admin@eciavic.org.au Website: www.eciavic.org.au
References
Early Childhood Intervention Australia website www.eciavic.org.au
Early Childhood Intervention Australia (2016). National Guidelines for Best Practice in Early
Childhood Intervention, February 2016. Available at: https://www.eciavic.org.au/documents/item/1419
NDIS ECEI website: ndis.gov.au/ecei
ABN: 61 830 423 920 | ACN: 617 517 423 9