Institute for Family Advocacy & Leadership Development Assoc. Inc.
A New South Wales association concerned with the rights and interests of people who have developmental disability
Gerry McInally
Committee Secretary
Joint Standing Committee on the NDIS
RE: Provision of services under the NDIS Early Childhood Early Intervention Approach
Dear Mr McInally
Family Advocacy appreciate the opportunity to provide a submission on the provision of services under the NDIS Early Childhood Early Intervention Approach (ECEI).
About Family Advocacy
Family Advocacy is a state and federally funded disability advocacy organisation in New South Wales (NSW), founded by families of people with disability. Our goal is to advance and protect the rights of people with developmental disability to achieve meaningful lives and enjoy the same opportunities and living conditions as the majority of Australians.
Family Advocacy: builds the capacity of families to undertake an advocacy role and provides advocacy related information, support and advice; runs a successful ongoing capacity building project for families of people with disability, called Resourcing Families; develops leadership skills in families; represents the rights and interests of a person with a disability to government, from a family perspective, regarding legislation, policy, funding, monitoring and practice, and the extent to which they reflect the needs of people with developmental disability.
The issue One issue we are very concerned about is the long wait for children who may be newly eligible for early intervention. We have heard this wait may be up to two years. They are not being seen as a priority as they are ‘new’, however, for the children themselves and their families, the daily challenges of a child with disability are not new, and in some cases, they may already have been going on for years.
As far as we are aware, early intervention providers have received a list of children from the NDIA that have been accessing New South Wales (NSW) government funding through Better Start. The NDIA have distributed people across ECEI providers to try and balance the load across providers and get participants into the system. The mantra from the NSW government that ‘no one will be worse off under the NDIS’ does not ring true when the interim funding pool of Better Start has been cut off. Children who are newly eligible, who would ordinarily have received Better Start
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funding are receiving no funding and are being forced to wait in a queue behind those families that are being transitioned from Better Start to the NDIS.
The NDIA states that early intervention is imperative in people achieving their potential. To cut off children that are new to the system from this assistance until they receive an NDIS plan works against this statement. There is a risk that these children will fall through the cracks or there may be a long delay before early intervention commences. For some, up to 2 years.
There is also a lack of clarity in the communication which is time wasting, and creates unnecessary stress on families, as well as creating mistrust. We understand early intervention providers do not have capacity to meet the demand and although they have received some NSW funding to assist people, in reality they do not have capacity to do so, at least not very effectively. Better Start ceased at the end of July 2017. This was not well communicated. At the moment, NDIA are still referring families to the Better Start programme. Better Start tells families there is no more funding and refers them back to the NDIA. Again, lack of clarity in communication is time wasting and creates undue stress on families who are already stressed.
Another concern for families is that the lack of transparency in relation to timeframes. A family may receive a call from the NDIA to say they are on a list and will be contacted by an ECEI partner. However, the delay of a number of weeks until they get the follow-up call has families feeling concerned that something has gone wrong and they have missed their NDIS meeting. Clear timelines in NDIA communication with families would go some way to alleviate this.
Further, we are concerned that there may be undue pressure being placed on ECEI participants to use a provider selected by the NDIA. As we understand it, the participant is put on a list of an ECEI provider who then becomes their childhood partner. It could place a lot of pressure on a family if they do not want to use the allocated provider. Although the family has the right to change providers or use a different provider for direct service it still puts them in a difficult situation. Where is the choice and control in this situation? It is important that it be clearly communicated to families that they can choose a different provider, in the initial communication.
For the reasons above we recommend:
Better Start funding be reinstated until the backlog of NDIS participants entering the scheme has caught up, so newly eligible children are not worse off. Clear communication is provided by the NDIA to families regarding timeframes of the ECEI process. True choice and control be provided to families by the NDIA communicating clearly that they have the right to choose their provider at first instance and not necessarily choose the provider selected for them by the NDIA.
We welcome further communication from the Joint Standing Committee regarding these issues.
Kind regards