NBPSA Administration
E: admin@nbpsa.org W: www.nbpsa.org
ABN: 30 282 719 189
17 August 2017
Joint Standing Committee on the National Disability Insurance Scheme
PO Box 6100
Parliament House
Canberra ACT 2600
email: ndis.sen@aph.gov.au
Dear Committee
Re: Inquiry into the provision of services under the National Disability Insurance Scheme
Early Childhood Early Intervention approach
Thank you for the opportunity to respond to the Committee’s inquiry into the provision of services under the National Disability Insurance Scheme (NDIS) Early Childhood Early Intervention (ECEI) approach.
The Neurodevelopmental and Behavioural Paediatric Society of Australasia (NBPSA) is the peak body for doctors (primarily paediatricians) with specialist expertise in the care of children with neurodevelopmental and behavioural disorders. Our 330 members work in the public sector, in private practice, and in academic and leadership roles across the nation. We care for children with a wide range of developmental and behavioural disorders including developmental delay, Autism Spectrum Disorder (ASD), intellectual disabilities and learning disorder. The vast majority of children and families referred for ECEI services will have a paediatrician pivotally involved in their care.
We are affiliated with the Royal Australian College of Physicians and have contributed to their broader submission to your inquiry.
The NBPSA strongly supports the principles of ECEI and the potential of this approach to develop a coordinated methodology of assessing functional needs, helping families towards a diagnosis and providing evidence-based, goal-focussed support for children with developmental disabilities, in order to maximise their participation and inclusion during their early years.
We recognise however, that the NDIS program and the ECEI approach are at various stages of implementation across Australia and that there is limited information from which to judge its effectiveness. The feedback our members receive from the carers ranges from large funding packages, quickly approved for families who are well resourced and strong advocates for their child, to unacceptably long waits with no services during the transition to new approved providers.
We provide the following recommendations on the provision of services under the ECEI approach.
a. Eligibility criteria for determining access to the ECEI pathway We support broad ECEI eligibility criteria that encompasses the functional needs of young children rather than diagnosis based criteria. We also support the focus on family centred goals. The ability to “fast track” some children with a diagnosis can be helpful but should not make the process for children without a diagnosis more difficult. We would welcome the opportunity to discuss the limitations of assessment tools such as the PEDICAT for assessing access to funding as well as the opportunity for ongoing appraisal, with NDIA, of which diagnoses should and should not, be listed.
We are especially concerned that socially and culturally disadvantaged families are struggling to access the early intervention services their children need, and that developmental paediatricians, who have special expertise in assessment and advocacy, are not involved in the development of management plans.
b. The service needs of NDIS participants receiving support under the ECEI pathway The provision of a key-worker under ECEI has been helpful in most circumstances however unfortunately this is all that many families have received. Liaison and coordination of the key worker with paediatricians would greatly improve efficiency and outcomes. The provision of therapy has been intermittent, inconsistent and often unavailable by many ECEI providers. Children who joined ECEI after HCWA funding was stopped were greatly disadvantaged in their access to services.
c. & d. The timeframe in receiving services and the adequacy of funding for services under the ECEI pathway. There is great inconsistency in the wait for ECEI services. The same provider may have a wait list that fluctuates by months over a short time period. Families leave their names on the waitlists of several ECEI providers then seem obliged to take the first one without consideration of the suitability of services offered to the needs of the child. Sometimes short-term funding packages are accepted with the result that services are not there when next needed.
f. The evidence of the effectiveness of the ECEI Approach The ECEI keyworker model has been helpful in orientating and supporting families particularly for children with clear permanent disabilities. However, families need practical help during this early phase of an evolving developmental disorder. We know of many families that have given up on their keyworker due to a lack of practical help and a family’s sense of urgency. Early intervention approaches should be based on functional needs and work towards goals that are important for the child and their family. Clear goal-based outcome measures, coordinated across professional disciplines and built into treatment and early intervention plans, would greatly improve the evaluation of effectiveness and efficiency and build a national evidence base for future planning.
More broadly, we recommend better provisions for expert clinical input at appropriate points within systems governing the implementation, performance and future development of the NDIS and the ECEI approach. The current separation of the Disability and Health sectors, in early childhood, is meaningless and potentially harmful.
NBPSA, as the peak body for medical specialists working with children who are eligible for ECEI, would like to offer our input into the Committee’s further inquiries and would be pleased to answer any specific questions the Committee has for us.
Yours sincerely,