Review of the Research to Identify the Most Effective Models of Practice in Early Intervention for Children with Autism Spectrum Disorders

Processes for regularly updating information about evidence of effectiveness and best practice

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3. Processes for regularly updating information about evidence of effectiveness and best practice

Evidence and information that allows assessment of best practice will continue to emerge over time. Thus, regular updating of the eligibility list of treatments will be required. We note that from 1995 there have been marked increases in publication about treatments for autism. Using the sensitive (broad) clinical queries treatment filter in PubMed we found that between 1995–2004 on average, 100 papers were published each year, while in 2010 over 280 were published. PubMed would not include many psychological and educational treatment publications that are relevant to autism, but we use this information to illustrate the growth rate of literature in this area and the need for strategies to keep abreast with emerging literature.

Some options for keeping up to date with the emerging literature on early intervention for ASD are:

Set-up automatic links to data bases (e.g. PsychInfo, PubMed and ERIC) to trigger notification of new/current autism intervention related publications.

Engage a research officer to review intervention studies retrieved and rate them in accordance with the evidence and good practice rating mechanisms established in this review.

Engage a panel of experts (from a range of professions) to review the intervention literature and its ratings (as generated in a) and b) above) and review whether this new information changes the eligibility rating as per Table 6.
4. Reinvigoration of operationalisation of principles of good practice

emphasis on services providing collaborative planning between families and multi-disciplinary teams

family involvement, which is essential for good practice (see page 15 should be specifically addressed in applications by panel providers.

The principles of good practice and the need for eligible services to meet these principles are outlined in Appendix F. In particular, attention is drawn to two principles:

The initial requirement that providers form a multidisciplinary collaboration, in line with recommended principles of good practice, was relaxed in 2010 because of the difficulty this presented to families in remote/ rural areas of Australia. Feedback suggests this change has not been helpful and re-confirms the importance of a multidisciplinary approach. Therefore we recommend that the requirement for providers to be multidisciplinary be restated with possible exceptions for isolated families in remote rural areas on a case by case basis

Particular questions have been raised concerning physiotherapy, and music therapy. Physiotherapy does not have an evidence base for autism. A special case may be made for individuals with Rett’s Disorder requiring physiotherapy. Music Therapy has some evidence to suggest it may be effective as a component of a program only (see page 43). We support the latter only if it is part of an eligible multi-disciplinary EI approach.

5. Employment of panel staff members with at least two years’ experience and expertise in autism, along with provision of ongoing training

The lack of experience and expertise among some service providers is a recurrent theme in stakeholder feedback. In line with principles of good practice, staff personnel delivering the programs need to have demonstrated substantial experience and expertise in autism, plus engagement in ongoing training and support/supervision. Changes in staff skill and experience profile subsequent to approval are to be reported on in the revised monitoring and evaluation process.

Employment of non-qualified staff was also noted as a stakeholder concern.

6. Revisions pertaining to evaluating provider applications

6(a) Decision making on provider panel approvals

Submitted applications must conform to published guidelines, and must clearly demonstrate how conformity to guidelines will be shown throughout the intervention, and how this will be monitored.

Criteria need to be clear for panel provider applicants that intervention must have valid scientific evidence (Type 1 and/or Type 2) and must meet principles of good practice indicating that this treatment will make a difference to autism in cognitive, adaptive, social, behavioural, and communicative development etc., as listed in modified current sections in FaHCSIA application document and seen in 5, above, in this section.

Full details of all providers regarding the status, professional experience, and competence in the autism field required. (Note that both the intervention program and the provider(s) have to be scrutinised.)

Full details of the program offered including all personnel, all components of intervention, time frame, setting, fees/charges, multidisciplinary input, and details of adherence to clinical guidelines should be provided.

We recommend that independent senior consultants with expertise and experience in autism should work with FaHCSIA to provide advice on unclear or doubtful applications.

6(b) We recommend changes to the application form as follows:

Applications to include reference to research evidence, direct evidence of intent to cover measurable outcomes, direct evidence of relevance to ASD and application of principles of good practice in ASD EI.

Revision of criteria relating to the goals of intervention is required. We recommend stating the required goals of “documented gains in development in social, communicative, cognitive, adaptive, play, self-care areas, and in improvement in problem behaviour areas”.

Providers should incorporate information on what measures will be used to demonstrate change within and across those core domains, and how improvement will be measured and quantified for individual children.

6(c) Provision of consistent advice to potential service providers seeking to join the panel:

Consistent responses are important for potential providers seeking information, to draw attention to the methods and rationale leading to approval standards for stakeholders who contact the department.

In problematic or unclear cases, the submission could be referred to experts for advice on treatment effectiveness.

7. Roles of Autism Advisors

An expanded role for Autism Advisors including service brokerage and case management assistance for families was a dominant theme in the feedback data.
This could involve further guidance for some families to help them to complete paperwork and to assist them to best utilise their funding allocations.

8. A system of ongoing monitoring and evaluation of services

Stakeholder feedback has indicated a need for more supervision and ongoing monitoring and evaluation of service providers, suggesting strongly that there need to be processes in place to ensure that services are being delivered as originally proposed.

Many respondents considered that once treatment has been funded, there is not sufficient follow up surveillance to ensure that interventions are proceeding as proposed, that approved provider staff have remained consistently engaged, that the program is multidisciplinary, and that the progress of the children in the domains specified for attention have been assessed to monitor improvements.

We recommend ongoing monitoring and reporting from providers covering the above noted principles, along with submission of regular reports to FaHCSIA. This could be monitored in vivo by a person on the ground, or via a questionnaire, or parent survey focused on the assessment of change in the domains targeted for improved adjustment.

We recommend the monitoring and follow-up of provider programs to ensure fidelity of treatment and to check any changes to staff or programs from the original granting of eligible provider status.

An important component of this recommendation is for clear and consistent fee schedules, e.g. for single versus group interventions, single providers in remote areas, changes in interventions; and particular components of interventions.

9. Innovation or changes to address identified problems

Stakeholder feedback highlights different service experiences across the different geographical areas, especially longer waiting lists, extra travel costs and a lack of appropriate early intervention services, which means families have to accept what is available, including multidisciplinary services and services with higher fees than those in metropolitan areas.

We strongly recommend consideration of the advantages and feasibility of tele-health methods where this could provide a better service to assist families.

10. Other issues raised by stakeholders included:

Fees and funding process: The current fee structure was widely discussed with suggestions for revision including improved consistency in fees and more funding for intensive intervention. The cut-off age for funding at age 7, was considered to disadvantage children who are not diagnosed early enough to access the early intervention funding packages.

Funding levels are not high enough to fully cover the intensive intervention programs which are most strongly supported by the evidence. The level of Government funding available to go towards the costs of intensive interventions needs to be made clear to families and service providers.

Conflict of interest: There was concern that some Autism Advisors were also service providers, presenting a clear conflict of interest and therefore potential inability to offer unbiased advice or information to families. This supports the importance of having clear guidelines about service provision and the need to ensure that all services follow these best-practice guidelines.

Delays in availability of some interventions

Some families are disadvantaged including non-English speaking, indigenous families, socio-economically and educationally poorer families.

There may be a need for a process to remove non-conforming services
Limitations of the review

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