Review of the Research to Identify the Most Effective Models of Practice in Early Intervention for Children with Autism Spectrum Disorders
Autism Advisors were also asked to provide information about their experience and expertise in the field of autism. One of the major concerns about the eligibility criteria for Autism Advisors was the perceived limited expertise and experience of many of the staff members employed by panel providers. According to the survey results, over 50% of the Advisors surveyed had more than 2 years’ experience as an Autism Advisor and over 90% had been working in the field of autism for more than 2 years. This implies that the majority of the professionals who completed the survey have at least a basic understanding and knowledge of the disorder. Almost all of the Advisors surveyed have been involved in professional development activities related to autism, including specific workshops, seminars and conference and were affiliated with state-based autism organisations. The majority of Advisors felt very well prepared (64%) or prepared (36%) for their role as Autism Advisors.
The majority of Advisors (54%) felt that the needs of the children with autism were being well or very well met by the current funding packages, while 43% felt the HCWA package was only adequate in meeting parents’ needs. They felt that urban families have access to a range of services and their needs are generally well met. However the needs of some rural and remote families were perceived to be inadequately met. They reported that for these families there is a lack of services, limited choices for service and long waiting lists. Advisors felt that additional funding needed to be allocated to provide home visits, workshops or group work, information and training for parents, as well as respite and crisis support.
Many Advisors felt that children diagnosed at a later age are disadvantaged and their needs are not being adequately met. There is concern about the length of time taken for parents to obtain a diagnosis because waiting lists for paediatricians are too long and GPs need more training to recognise symptoms. The quality of some services offered to families was considered inadequate, especially some questionable treatments, poorly trained and inexperienced panel providers, with some families being described as being ‘ripped off’. One of the major concerns about the eligibility criteria for Autism Advisors was the perceived limited expertise and experience of many of the staff members employed by panel providers. More rigorous standards for eligibility of panel providers were suggested, especially in terms of their staff qualifications and experience and closer monitoring of services once they are approved, to ensure consistent quality of intervention.
Advisors were asked to comment on whether current eligible interventions reflect evidence-based intervention practices in early intervention for children with autism. Most Advisors felt that the majority of current eligible interventions reflected current guidelines for evidence-based intervention adequately or well. However, only one Advisor felt that current services reflected these guidelines very well. Perhaps more effort needs to be made to address this issue. See Table 8.
Over 50% of advisors indicated specific concerns over some of the currently eligible services, especially the way in which some services provide intervention that was not in accordance with their original agreement with FaHCSIA. According to one advisor, some services ‘lure’ families with eligible services and then market non-eligible interventions. Advisors would like to see stricter reviews and guidelines with service providers having to meet certain standards, qualifications, and to demonstrate evidence behind their practices. This is in line with a request from peak bodies.
Advisors were invited to suggest additional interventions they believe should be considered by FaHCSIA for eligibility for funding. The most commonly requested additional services were physiotherapy and music therapy, especially if presented as part of a multi-disciplinary program. In terms of programs that should no longer be funded, advisors felt the need for all services provided by panel providers to be closely monitored to ensure that they meet current research standards in providing evidence-based intervention.
Autism Advisors were asked to comment on possible issues that made it difficult for parents to access eligible services. The major concerns included locality of services and the distance parents sometimes have to travel to access these, the availability of trained and experienced professionals and the waiting lists attached to some services. In addition, advisors indicated that language barriers, lack of appropriate case management, social issues and poor time management also impacted on how parents are able to access appropriate services. See Table 9.
There was general consensus among the Autism Advisors that families should be able to access a range of service options and that the current list of interventions is adequate for most families and adheres to the necessary criteria outlined by FaHCSIA. The criteria outlined by FaHCSIA suggest that eligible services should be well structured, organised, regular and predictable and focused on specific objectives. Services should have an ASD specific content and focus and be well managed and focus on children’s attention, compliance, imitation, language and social skills and provide a supportive teaching environment to maximise early learning. Over 70% of advisors felt that the majority of eligible services adhere to these criteria well or very well. More than 70% felt that the eligible services provided ASD specific content and focus, 64% felt that eligible services provided appropriate functional approaches to problem behaviour, and attention to communication skills and collaborative planning with families.
According to the Autism Advisors survey, the majority (96%) of parents make contact with Autism Advisors within two months of diagnosis. Once referred, families have a range of needs to be addressed. All families require information about services within their local areas, with most families also wanting information about how to choose the most appropriate services, cost of services, general information on autism and how to access government services. In addition, under the ‘other’ category some families wanted access to resources, such as information on financial support, preschools, respite, and information about how to access grief counselling. See Table 10.
Table 10: Parent needs from the Autism Advisors on initial contact
The majority of Autism Advisors (85%) felt that parents are typically able to find the services they want in their local area and that parents are ‘somewhat satisfied’ (70%) with the list of eligible interventions currently available. Most parents are very satisfied with speech therapy services, occupational therapy, home-based interventions and services offering a multidisciplinary approach. Families are most satisfied when they feel that they are getting value for money and are supported by therapists who have their child’s interest at heart.
However, rural families reported problems accessing services, a lack of choice and long waitlists, having to travel long distances to find appropriate interventions. Some parents are frustrated that their preferred therapists are not recognised as eligible service providers and so they are unable to spend their HCWA funding on these services. Some families have expressed dissatisfaction with the cost of the services charged to clients with funding packages.
Advisors felt that parents’ needs post diagnosis were being met adequately (67%) or very adequately (19%) by the HWCA eligible interventions. A number of possible improvements to the Early Intervention Operational Guidelines were suggested by autism advisors, in consultation with parents. These included:
While there was considerable agreement between feedback from Peak Bodies and Autism Advisors on a number of matters, there was a mismatch in the perception by Autism Advisors that the interventions available to parents were evidence based, and the feedback from Peak Bodies many of whom were concerned at the lack of evidence base in many of the interventions being provided by Provider Panels. This suggests a poor awareness among Autism Advisors about the research evidence underpinning many of the programs provided by panel members.
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