Submission to the Parliamentary Inquiry into the Provision of services under
the NDIS Early Childhood Early Intervention Approach
- Muddy Puddles – Who we are Muddy Puddles provides opportunities on the South Coast of NSW for children and young people with a disability to build skills for a good life. Working together with families, carers and the community we provide therapy, development programs and individual supports to promote personal growth, awareness and inclusion.
There is often a big gap in services and support for people with a disability in regional Australia. Prior to 2016, for families in the Eurobodalla Shire on the South Coast of NSW caring for a child with a disability or developmental delay, the situation was dire. There was a lack of early childhood early intervention services available, a severe shortage of local therapists and very limited programs for children and young people with a disability to build their skills to actively participate in the community.
A group of local parents and community members took matters into their own hands at the end of 2014 and formed a not-for-profit charity organisation with the hope of creating positive change for children and young people with a disability in the region. This group of volunteers worked tirelessly to establish Muddy Puddles and over the past 2 years we have built a quality organisation and attracted a highly qualified team. Our team consists of a psychologist, occupational therapist, speech therapist, behaviour therapist, music therapist, dietician and several educators.
In 2015 we received a grant from the State government to build a therapy centre from which to operate. This move reflected the need to establish an early childhood early intervention service in the Eurobodalla and indicates the faith the government had in the organisation to set this service up. We have now commenced construction in Batemans Bay and hope to complete the building by early
- In the meantime we operate from a building donated for our temporary use by a local business.
Muddy Puddles has never received ongoing funding from Family and Community Services to provide Early Childhood Early Intervention services. When the organisation was formed there was an expectation that Muddy Puddles would eventually receive FaCS funding but the introduction of the NDIS changed that and we were informed by the NSW State Government that we would have to wait until the NDIS rolled out to access individualised funding.
- Summary of submission This submission addresses the following terms of reference:
c. The timeframe in receiving services under the ECEI pathway f. The evidence of the effectiveness of the ECEI Approach h. The adequacy of information for potential ECEI participants and other stakeholders i. The accessibility of the ECEI Approach, including in rural and remote areas j. The principle of choice of ECEI providers Page 1 of 4
This submission is a personal account of a local situation. It is informed by the experiences of families in our community and our own experiences as a service provider trying to advocate on behalf of those families. Although this submission draws on our local story, it may reflect the experiences of other regions.
The families in the Eurobodalla have been let down by the ECEI Approach. The process has failed to support children requiring early intervention with ECEI transition providers unable to do the job they are obligated to do. There are dozens of children that are clearly eligible for the NDIS but have not yet obtained a planning meeting, let alone a plan.
- Comments and recommendations related to the terms of reference c. The timeframe in receiving services under the ECEI pathway The NDIS rolled out in the Eurobodalla in July 2016. In October 2016 it was announced that children aged 0-6 yrs would not go through the LACs to enter the NDIS. The NDIA announced the Early Childhood Early Intervention (ECEI) Approach and informed that organisations that were currently funded by FaCS would be selected as ECEI transition providers to deliver the ECEI Approach.
Mission Australia, Cerebral Palsy Alliance and Aspect are the nominated ECEI transition providers in the Eurobodalla – this has been in place since late last year. Although Muddy Puddles was an ECI provider in the area equipped to deliver the transdisciplinary approach, we were not eligible to be considered as a transition provider as we were not FaCS funded. We were told that once participants had been channelled through the ECEI transition provider and had a NDIS plan they could then access our service.
Over a year has passed since the introduction of the NDIS in our area and we still have not seen one child aged 0-6yrs with a NDIS plan.
It is our understanding that the transition providers received ‘defined’ lists of children to service in FY2017 – there were 11 children in total on those lists for the Eurobodalla. These are children who have been receiving supports in the past and funded by FaCS. As far as we’re aware, these families have been contacted but not all have been met and assisted to access the NDIS (the transition providers were to be trained in the process and assessment tools last November – this did not happen for the people on the ground who are tasked with the role of partnering with families). There are children with severe disabilities who have been funded previously who have not been contacted – therefore we assume they were not on a defined list.
Recommendations:
- If there is a clear lack of capacity of transition providers to fulfil their obligations, allow a partnership arrangement with another local ECI service provider with capacity to ensure families are seen quickly and necessary supports are put in place.
f. The evidence of the effectiveness of the ECEI Approach The ECEI Approach has failed to roll out in our region. We are concerned that the transition providers in our area do not have the capacity to deliver appropriate early intervention services. There is one part-time employee at Mission Australia (working one day per week) that is tasked with carrying out the ECEI role. CPA has now closed its operation in the Eurobodalla. Aspect does not have a presence in the Eurobodalla.
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We have 49 children aged 0-6 yrs on our database who have presented to our service for assistance. Not all will be eligible for the NDIS but this number shows that there are many more children that require early intervention than the 11 that appeared on the initial defined lists.
There is no clear communication about what will happen with new entrants and how long it will be before they will be attended to. We were told that new entrants (i.e. those not on a defined list) would be seen once the children on the defined lists were addressed.
A recent survey of parents/carers indicated that 75% of respondents had tried to apply for the NDIS and all those who had tried to access ECEI services under the NDIS told of poor experiences, slow service and not knowing who to go to for help.
Recommendations:
- Closer monitoring of ECEI transition providers (or partners in full scheme) to ensure they are able to fulfil their obligations and provide the necessary short-term intervention services for children and the appropriate supports to the families accessing the ECEI pathways.
h. The adequacy of information for potential ECEI participants and other stakeholders Our recent survey of parents/carers of children aged 0-6 yrs showed that:
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25% of respondents were not aware of the process to access early intervention support under the NDIS
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50% of respondents had not been contacted by the NDIA or an ECEI transition provider about entering the NDIS
When trying to work out a solution for families in the Eurobodalla we have had contact with NDIA (local office, national intake line and senior representatives), ECIA and FaCS, along with the local transition providers. During these interactions we have encountered a lack of understanding (or lack of interest) in the situation facing children and families in our region.
The NDIA website has some great communications around the processes. The problem is that the process is not working and we have not been told why or what is to be done to fix it.
Recommendations:
- Improved communication from NDIA and ECEI transition providers at a local level – for families and service providers and other mainstream supports. It is necessary to continue communicating at the local level even in Year 1 rollout sites.
i. The accessibility of the ECEI Approach, including in rural and remote areas As an organisation that was formed to address the severe shortage of services for children with a disability or developmental delay, we are acutely aware of the difficulties faced by regional areas when trying to attract and retain local qualified professionals. ECEI providers need to understand the local environment and it’s unique challenges to ensure families are well supported.
As there is a lack of service providers in regional areas, they often reach capacity and families experience long waiting lists. Travel is also an issue in regional areas where service providers must travel long distances to implement the best practice approach to ECEI.
Recommendations:
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- Improve funding for more remote clients to cover cost of travel
- Provide support or incentives for services providers to partner with Universities to encourage more student placements and other out of region service providers with capacity to consider short term regional partnerships.
j. The principle of choice of ECEI providers Under the current conditions in the Eurobodalla, those families wanting to access our ECI services are not able to as they have not entered the NDIS – no choice and control. As a service that has been committed to providing a local solution for families, we are concerned that a large number of children are going without sufficient early intervention due to lack of funding. We are also concerned that families will be tied to an ECEI transition provider for a long period before they have access to choice and control via a NDIS plan.
Recommendations:
- If ECEI transition providers are unable to assess the needs of children in a timely manner then the families should be able to contact NDIA directly and request access to the scheme to see the provider of their choice.
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