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



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2.9 Summary

Evidence from high quality trials that is consistent across studies is lacking. There are also few studies with enough power to show whether real improvements have been made as a result of the interventions studied. Further, limited studies exist that have well documented information about potential adverse outcomes, and there are few studies that rigorously assess cost benefit of treatments. There are limited data about the effectiveness of interventions that have been shown to be effective in small trials, when implemented in service settings, where ensuring treatment fidelity and compliance are more problematic.

Nonetheless, high intensity interventions which address the child and family’s needs using a behavioural, educational and/or developmental approach have been shown to be the best of currently available early interventions. In addition a few interventions have now been proven to be ineffective.

The summary of recommendations provided in Table 6 incorporates the findings of reviews, evidence syntheses and an update of evidence as available by May 2011. It pertain to interventions that we recommend be considered eligible or ineligible for HCWA Early Intervention funding, based on what we know today. As more is learnt about autism, new evidence is published, and best practice models are evaluated, it is likely that listed interventions will have their eligibility modified (either up or down graded), and that new interventions will emerge. It is therefore recommended that ongoing literature monitoring and reviews are conducted.

Part 3 – Stakeholder Surveys

3.1 Background and Methodology

After discussions with FaHCSIA, the project team undertook two surveys and one consultation to gather information about views of professionals involved with the HCWA Package. The surveys were sent to:



key autism peak bodies and professional groups whose constituents are service providers for the HCWA Package

Autism Advisors.


The consultation was with the Parenting Research Centre (PRC) who developed the Raising Children’s Network website. Extensive surveys with parents were beyond the scope of this evaluation. The importance of gaining parents’ views is acknowledged and recommended for further evaluation studies.

3.1.1 Peak Bodies Survey


Peak Bodies representing members/professionals who are registered as Autism Panel Providers (professionals approved by FaHCSIA to provide eligible interventions) for the HCWA Package; or practitioners who refer families to such providers, were invited to provide written submissions based on a series of questions developed by the treatment review project team. The organisations/peak bodies were requested to seek the views of their membership in order to provide a representative submission to the project team. In consultation with FaHCSIA, the following peak bodies were contacted: Occupational Therapy Australia, Speech Pathology Australia, the Australian Psychological Society, The Royal Australian College of Physicians Division of Paediatrics and Child Health, the Royal Australian and New Zealand College of Psychiatrists, and the Autism Advisory Board. (See letter to peak bodies in Appendix G.)

Survey Instrument and Procedure

The project team, in consultation with FaHCSIA, developed a list of open-ended questions of relevance to these peak bodies. The Survey was developed to enable peak organisations to comment on a number of key issues designed to help improve the current service provision and funding package for young children with autism.

Organisations were asked to comment on the current administration of the Early Intervention (EI) Provider Panel component of the HCWA Package, specifically in relation to the approval process of panel providers, the approval process of specific interventions, and the interaction between panel providers and FaHCSIA.

Organisations were invited to comment on the adequacy of the EI services of the HCWA Package, including the amount of funding available per family, the breadth of intervention currently available, and the overall quality of the service.

Organisations were also invited to comment on currently approved interventions and their views about any additional services that should be funded.

Questions were asked about issues raised by parents including their access to services, possible improvements in implementation, their satisfaction, and suggestions on how to improve the EI Operational Guidelines.

A pilot version of the survey questions was sent to three autism panel providers, one each from occupational therapy, speech pathology and psychology for comment. Minor modifications to the questions were made in response to feedback from these panel providers. As the letter of invitation for submissions was sent to the Chief Executive Officer or Chair of these organisations, the project team left it up to this person to email their membership and seek comments/suggestions. These were compiled by the peak body or organisation and a summary of comments was forwarded by way of a written submission to the project team. Hence it is not possible to determine how many individual professionals were consulted.


Submissions were received from five of the six organisations contacted, namely the Australian Advisory Board, Speech Pathology Australia, Australian Psychological Society, Occupational Therapy Australia Limited, and the Royal Australasian College of Physicians Division of Paediatrics and Child Health. In addition unsolicited submissions were received from Services for Rural and Remote Allied Health (SARRAH), A4, and an individual professional. The latter was sent to the appropriate peak body for inclusion in its response.

Analysis


All written responses to the open-ended questions were read by two members of the project team and summarised. Subsequently key points were distilled in relation to each question asked. There was strong agreement between project team members and across peak bodies in relation to the key points raised. A final overarching summary of themes was consensually developed and is presented here.

Results


The key recommendations from the 5 Peak Body organisations, to each of the survey questions, is summarised below. After analysing the completed surveys, it was clear that there was a general consensus among the organisations as to their major concerns and also their recommendations to improve service delivery.
Q.1 (a): Views of the administration of the HCWA Package in relation to approval of panel providers

The general consensus among the 5 organisations indicated a definite preference for all approved services to provide a multi-disciplinary approach to intervention. All approved providers should be monitored and have guidelines in place ensuring multidisciplinary collaborative practice. The present lack of experience and expertise in autism among some service providers needs to be addressed. Approved services should have a strong commitment to providing evidence-based interventions.

Q.1 (b): Views on the administration of the HCWA Package in relation to approval of specific types of intervention

It was agreed that there is a need for clear procedures for the assessment and ongoing evaluation of panel providers. It was recommended that independent consultants with expertise and experience in autism should work/collaborate with FaHCSIA. Organisations surveyed also agreed on the need for clear standards to ensure quality and consistency of service providers, and that approval should only be given to services providing evidence-based interventions. Eligible services should also have a focus on providing collaborative planning between families and multi-disciplinary team members.
Q.1 (c): Views on the administration of the HCWA Package in relation to panel providers’ interaction with FaHCSIA

Revision of the current fee structure was suggested, including of the fees charged by providers for intervention. Organisations surveyed indicated that the current fee schedule template could be made easier to work with. Also, changes to Guidelines need to be well disseminated to either providers or parents. A quality assurance framework is required.
Q.2 (a): Adequacy of service provision of HCWA funded services in terms of amount allocated per family

An optimal aim among the organisations surveyed is consistency of service provision across all geographical areas. It is proposed that funding be indexed annually to reflect Increases in the cost of most services. Public funding levels are not sufficient to fully cover intensive intervention. Organisations recommended guidance for families to assist them to best utilise their funding allocations.

Q.2 (b): Adequacy of service provision of HCWA funded services in terms of breadth of intervention provided

There is a limited range of services in some rural and remote areas. The approval in rural and regional areas of some sole providers who lack multidisciplinary team input has negatively impacted on the plan for a multi-disciplinary intervention focus among providers. According to some organisations surveyed, there are often delays in the availability of certain interventions in some areas. One concern expressed was the conflict of interest where Autism Advisors are also service providers. There is not additional funding available for assistance for Indigenous families, non-English speaking families or other families who may have additional needs.
Q. 2 (c): Adequacy of service provision of HCWA funded services in terms of quality of advice to parents from autism advisors

It has been suggested that the role of Autism Advisors be expanded to include brokerage advice and support for families. However Advisors must have enhanced knowledge, experience and expertise to ensure consistency of information to families. Conflict of interest issues arise when Advisors are also service providers.
Q.2 (d): Adequacy of service provision of HCWA funded services in terms of time frame for service provision

The present cut-off date for EI funding (7 years) means children who are not diagnosed until older ages are ineligible for this funding. It was suggested that funding be provided for two years following diagnosis, for children who are diagnosed at older ages. There is a lack of awareness of the funding package among some parents and the package needs to be more widely publicised.

Q.3: Specific concerns about currently funded interventions

Of major interest to all organisations surveyed, was a desire for increased supervision, ongoing monitoring and evaluation of approved service providers. All approved service providers must be accountable and transparent in the selection and delivery of services. Some service providers are believed to lack specific autism expertise and experience and this needs to be addressed. In addition, all funded services should be evidence-based and provide consistency and transparency in fee structures and fee collection across services.
Q.4: Interventions that you consider should be funded that currently are not

Services that are funded should be evidence-based. There were suggestions by some respondents for physiotherapy and music therapy to be included as approved services if they form part of a multi-disciplinary approach. Further, consideration should be given to providing more funding for families living a long distance from services.
Q.5: Currently funded interventions that should no longer be funded

There was consensus across all organisations that funding should only be provided for services that are evidence-based, goal-directed and collaborate with families in determining priorities and goals. Therefore FaHCSIA needs to establish best practice guidelines and audit services, as well as introducing a process to remove non-conforming services.

Q.6: Parents’ issues in accessing HCWA funded early intervention services

There are a number of issues raised with organisations by parents in accessing the early intervention services. These issues included the difficulties for some families to access appropriate services and the travel costs imposed on families to access service, especially in rural and remote areas. There are long waiting lists and limited services in rural and remote regions, which leads to lack of choice and higher fees. The cost of certain therapies is prohibitive to many families. Parents want greater access to experienced, knowledgeable service providers.

Q.7: Suggestions for improvements in implementation of the HCWA package

There was consensus on the need for clear communication between FaHCSIA, advisors, service providers and families, especially around any changes to guidelines. Parents also recommended a stronger complaints process and more accountability for service providers. Parents would like clearer funding guidelines, with some changes to funding process recommended, and extension of funding to include children diagnosed later and those with other disabilities. Organisations surveyed recommended an updated website and a way of centralising records for better access for families and service providers. Mechanisms for ensuring accountability of service providers were also recommended.
Q.8: Parents’ satisfaction with the current eligible interventions available through the HCWA as reported to survey groups

While most parents were satisfied to some extent with the current approved services, they also suggested changes to guidelines and extra funding for rural and remote families. Families and advisors want to be kept informed about the range of services available through the HCWA funding to assist them to make informed choices. More services in rural and remote areas are wanted to meet demand.

Q.9: Suggested improvements to the early intervention operational guidelines

According to the surveys, the current Guidelines are beneficial and should be updated regularly. The guidelines should provide clarity around development of service plans and guidelines around purchase of resources and information about alternative models for EI services. It has been suggested that the role of advisors be expanded to provide brokering support to families. The information on the FaHCSIA website should be regularly updated.

Overall Summary of Findings


After summarising the input from the Peak Bodies, a number of recommendations were found to be common among the organisations. There was general agreement across all organisations on a number of key points. There was general consensus that all potential panel providers must meet certain standards and requirements in order to meet the eligibility criteria. These requirements included:


a multi-disciplinary approach to service provision, with a focus on collaboration with families

a system of ongoing monitoring and evaluation of service providers and services,

a commitment to providing evidence-based interventions,

a commitment to employing staff members with at least 2 years’ experience and expertise in autism, and to providing ongoing training about autism to panel providers and Autism Advisors.

Another key issue raised by all Peak Bodies was the need to develop the current procedures for the assessment and ongoing evaluation of eligible panel providers. This is an essential requirement in order to ensure the quality and consistency of service provision. There was consensus that any evaluation and monitoring process would be most effective if undertaken by independent consultants, with experience and expertise in autism.

Peak Bodies wish to have consistency of service provision for families across different geographical areas, especially early intervention services in particular rural and remote areas. Families who have to travel long distances to access services, often incur additional costs. The current fee structure was widely discussed, with suggestions for improved consistency in fees and more funding for very intensive intervention. It was proposed that the cut-off age of 7 years for funding be increased to include older children who have not been diagnosed early enough to access the early intervention funding packages.

There was also discussion about the role of Autism Advisors. It was felt that the role could be expanded to include more of a brokering role, enabling advisors to offer guidance to families and to offer family support. There was also concern that some Autism Advisors were also service providers, presenting a conflict in interest and therefore potential inability to offer unbiased advice or information to families. It was felt among the Peak Bodies that the current Guidelines were clear but should be regularly updated.

3.1.2 Consultation with the Raising Children’s Network (Autism)


Discussions were held with Mr Derek McCormack, Manager, Science Communication Content Manager, Raising Children Network (RCN) about the role and function of the PRC Raising Children Network (Autism) Internet based services for families of children with ASD in relation to Early Intervention Therapies. The RCN provides a suite of resources on the internet to inform families and professionals about autism, and to offer education and guidance on a range of aspects of ASD. The four main entry points to further information on the website are: (1) Learning about autism, (2) Guide to therapies, (3) Service pathfinder and (4) Parent forum. McCormack reports that there have been more than156,000 visits to the website in total since launching in 2009, with an average of 200 visits per day. The two resources of particular relevance for the current review are:

Reviews of treatment and interventions which are posted on the Guide to Therapies Site:

http://raisingchildren.net.au/parents_guide_to_therapies/parents_guide_to_therapies.html


The online Parent Discussion Forum which is the most popular parent forum in the RCN suite:

http://raisingchildren.net.au/forum/Forum133-1.aspx
Reviews of Treatment and Interventions

The RCN autism website is now in its third year of operation. It is one component of the HCWA package which focuses on internet delivery of information to families and provides sections as noted above which include a guide to therapies and interventions for autism. This component sets out the features of each of a wide range of interventions. It incorporates a research rating scale of the status of each one, which is based on the scientific evidence for its effectiveness using accepted rating scales for quality of research evidence from the literature. Each entry concludes with a list of references and web-based information possibilities for readers to follow up to access further information if they wish. This site is kept current with updates of the latest research every 6 months.

The RCN has a team of science communication experts (writers and editors) working with partner experts on this site to identify and review current evidence and to translate and present the findings in easily consumable language for families. This team is very focused on the rigour of the evidence they provide but also emphasizes the need for family context and treatments to fit closely together in making treatment decisions. For the selection of interventions to be researched and reported on the site, the RCN relies on information from a variety of sources to identify proposed treatments requiring review. These sources include conference attendance, media stories about ASD, parent feedback on what is circulating ‘out there’, what is being talked about in communities, and watching and listening in order to tune in to what is attracting attention in the autism field. On this site, an email address is provided for families to contact the RCN if they wish.

Feedback to RCN on the site is not substantial (but see below for a recent survey in progress to seek feedback), and mostly comes in the form of parents reporting their own family stories. Feedback from professionals working in the field has also been limited but the site is well known and some professionals at least, check the material presented in the intervention reviews to assess its fit with their practice. Some autism bodies (e.g. Autism Victoria) have reported to the RCN staff how valuable this site is for them.

In answer to the question of how the adequacy of current provision of funded interventions is viewed, McCormack noted that it is hard to answer this question because there is insufficient knowledge in the community on what is being funded, and what might be on a list of approved interventions. In some cases Autism Advisors do not have this knowledge either. He also noted that the same comments apply to attempts by the RCN team to access state based information on providers of assessment and diagnosis. The RCN has begun to build a list of providers but is finding it difficult to get information about who is available for this work. McCormack commented that parents have been requesting more technology to support interventions for their children.

It is important to explore and review technological developments which could enhance learning and social networking for children with autism (e.g. use of iPads), although this area will probably address an older age group than that covered by the Early Intervention package.

Autism Online Discussion Forum


This is an online space for peer support, where parents share ideas and stories about their experiences. So far, this forum has seen more than 4,000 new conversations begun by parents, drawing over 28,000 replies and comments from others. The popularity of this forum has lead the team to expand it, and to break it into a few ‘sub-forums’ on request from dedicated forum users. See the online forums here: http://raisingchildren.net.au/forum/Forum133-1.aspx

This is the most popular RCN internet resource and attracts a great deal of discussion. McCormack described it as ‘a great case study on the need for peer support’ in the ASD field. It incorporates topics for discussion suggested by and engaged in by parents. One example cited was ‘how to deal with birthday events’. The high level of good positive support given by parents to other parents in this forum is notable. The RCN team also provides suggestions on topics for discussion. A three person RCN staff team moderates this forum and reads every post. They contact users only if the terms of use have been breached or scanning of a post indicates that there may be a major problem for a particular respondent which indicates that they might need help or advice. If it is considered that help is needed for a particular case, they consult with experts to garner ideas and strategies to underpin feedback to that correspondent. A website evaluation survey was recently launched to ask parents about how they feel about RCN information and whether they feel further support is needed.


http://raisingchildren.net.au/survey/TakeSurvey.asp?SurveyID=30K493216891G

It will be useful to follow up on this initiative for further feedback.

Further comments and discussion with McCormack revealed that there may be a need for more clarity around what the HCWA Package offers. Choices are difficult if consumers do not know what is available. For some families the paperwork and personal research required to make use of the resources and available funding may be a barrier. Parents often need a dedicated advisor or mentor to help them through this process. While this role may be filled by an Autism Advisor, advisors themselves are not always clear and fully informed about resources and availability.

3.1.3 Survey of Autism Advisors

Background


In order to obtain the views of Autism Advisors about the HCWA package and their experiences with providing advice to parents, a purpose-designed electronic survey was developed specifically for Autism Advisors.

Survey Instrument


The survey was developed by the project team to focus on the key questions asked of the peak bodies and to obtain more specific information on the experiences of Autism Advisors who have regular contact with parents of newly diagnosed children who are accessing the HCWA funding. The first section of the survey obtained demographic information from the advisors regarding their location, length of time as an advisor, professional background, specific training and affiliations. Closed questions with fixed responses were used in this section.

The second section elicited information about their roles and experiences as Autism Advisors. Specifically, information was sought about the time spent with parents, adequacy of their preparation for the role, adequacy of the HCWA funding, knowledge of evidence behind the interventions provided, concerns about any current eligible interventions, need for other interventions currently not funded, issues experienced by parents in accessing services, and operationalisation of the package, funding, and criteria for service eligibility. Both closed questions with fixed responses and open ended questions were used in this section.


In the final section Advisors were asked their perspectives about parents’ needs, and about satisfaction with panel providers, and about parents’ informational needs and concerns. Both closed and open ended questions were utilised. See Appendix H for copy of the survey. The survey was piloted with several Advisors prior to finalisation and deployment.

Procedure and Analysis


A link to the survey was emailed to the people on the list supplied to the project team of Autism Advisors across all states/territories in Australia, and to the state autism associations, who were asked to forward this to their advisors. This dual pronged approach aimed to capture as many advisors as possible. While it is not clear how many people received the survey, we understand there are 58 Autism Advisors across the country. Advisors were asked to follow a link to the electronic survey using the Zoomerang electronic survey software www.zoomerang.com. Advisors were asked to complete the survey within two weeks. A follow up email was sent two weeks later to encourage further completion. There were 53 visits to the site while the survey was open. In total, responses were received from 29 Advisors, revealing a 50% response rate. Data collected from these surveys were anonymous. Descriptive statistics (frequencies and percentages) only were used to summarise the data. Open-ended questions were analysed using content analysis after two researchers read and summarised key findings and identified emergent themes.

Results


Of the 29 responses to the survey received from Advisors across all 8 States and Territories, the majority of responses were from New South Wales (25%) and Victoria (25%), with 14% each from South Australia and Western Australia, and 7% each from Queensland and ACT. We acknowledge that a 50% response rate to the survey is less than optimal and that this may limit the reliability of the results.
Demographics

In the first section of the Survey, Autism Advisors provided information about their experience and expertise in autism. According to the completed surveys, the majority of Advisors come from backgrounds such as teaching and psychology, occupational therapy and early childhood education. However, 46% of the Advisors come from other training backgrounds including counselling, social science, disability studies, speech pathology, human geography and community development, family support, communications, art therapy, information management and a parent. See Table 7.


Table 7: Professional backgrounds of Autism Advisors survey respondents

Professional Background

Number

Percentage

Teaching

9

32

Early childhood

2

7

Occupational therapy

1

4

Speech pathology

0

0

Psychology

8

29

Social work

0

0

Other

13

46

NB: some respondents indicated they had more than one profession

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.


Service Provision

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.


Table 8: Effectiveness of eligible interventions in reflecting current best evidence on outcomes of early intervention for children with ASD

Evidence-based intervention

Number

Percentage

Very well evidenced

1

4

Well evidenced

16

57

Adequately evidenced

10

36

Inadequate evidence

1

4

Very lacking in evidence

0

0

Advisors were also asked to comment on whether parents were kept informed about the level of evidence for eligible interventions. Advisors overall felt that parents are sufficiently provided with information about the level of evidence-base for eligible services. However, the amount of information provided is often dictated by the level of parent interest, and dependent on the questions parents ask. They also considered that it was the responsibility of service providers (i.e. Panel Providers) to advise parents on this matter, rather than this being something that Autism Advisors necessarily provided.

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.


Table 9: Issues that impede access to eligible services

Issues

Number

Percentage

Locality/distance

27

96

Cost

20

71

Waiting lists

25

89

Availability of providers

26

93

Lack of adequate resources

5

18

Family finances

17

61

Other

5

18

NB some respondents indicated they had more than one issue impeding access.

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.

Parent Needs

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

Parent Needs

Number

Percentage

Emotional support

22

79

Information about ASD

23

82

Information about government support

22

79

Information about parent support groups

15

54

Just need to chat

22

79

Information about accessing right services


24

86

Information about services available

28

100

Other

7

25

In addition, Advisors reported that parents’ information needs reflected need for knowledge about services in their locality (93%); which intervention is right for their child (86%); cost of services (56%); local autism associations/support groups (52%); other parents’ experiences with services (52%); websites (48%) and evidence base of interventions (30%).

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:



a focus on collaboration between all service providers and parents to ensure each child maximises potential,

improved complaints process,

regular update of all information in Guidelines

all documentation to be simplified and less ambiguous

monitoring the costs of funded services

clarification of relationship between providers and individual members of consortiums who work together to provide a multi-disciplinary approach to intervention for some families.


Overall, Advisors felt that interventions currently funded and the whole funding process met the needs of children with ASD and that families are generally satisfied with services provided. Most dissatisfaction stems, and problems arise, from service providers who do not provide the quality of intervention they claim, or who do not adhere to the current guidelines for service provision. Advisors felt strongly that there should be stronger ongoing monitoring or auditing of all panel providers to ensure quality service provision according to the guidelines.

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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