About Autism Spectrum Disorder in New Zealand:
About Altogether Autism:
Q: Why does Altogether Autism exist?
A: In 2006 the Ministry of Health determined a need for a national disability information and advice service (DIAS) in autism spectrum disorders. The Ministry of Health put out a call for proposals, and Parent to Parent and Life Unlimited jointly tendered for the contract to provide this service. The Ministry of Health awarded the contract to this joint proposal and Altogether Autism was established.
Q: When was Altogether Autism started?
A: The contract with the Ministry of Health was signed in July 2007. Public meetings were then held in 17 locations with over 800 participants during July – August 2007, and the information service commenced in October 2007.
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Q: What do you get from Altogether Autism in response to an information request?
A: Altogether Autism will answer your query by reference to a range of material we already have to hand, and will also undertake research in order to appropriately answer your specific question. You will receive, usually by post or by email, a full package of information specific to the question you have asked, together with any other relevant information we think may be useful to you.
Q: How long should it take for an information request to be processed?
A: We aim to acknowledge all requests within 2 working days and for all requests to be answered within 7 working days. There are occasions when the time frame may be longer when specific research is required or where we need to consult with the Professional Expert Group for advice. In those cases we will endeavour to keep you informed regarding the timing of our response.
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Q: Can an information request be made a priority?
A: Our information officers routinely process information requests as they come in, on a “first come first served” basis. However, the team are able to attend to more urgent requests. Please let us know in your email or phone call if you consider that your request is urgent and why.
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Q: Who are the Professional Expert Group and what is their experience?
A: Tanya Breen is the Clinical Consultant to Altogether Autism – her role involves providing clinical advice to the service, developing training for ASD Advisors, writing material for the website, responding to complex information requests and coordinating the Professional Expert Group.
The role of the Professional Expert Group is to provide the evidence-based information on ASD issues, such as diagnosis, intervention and service provision. The Group will provide a platform for provision of multi-disciplinary advice and commentary.
The Professional Expert Group is made up of Members, all were chosen because of their professional experience in ASD or ASD-relevant areas. Most are health or education professionals.
Q: Do Professional Expert Group Members work full time for Altogether Autism?
A: All Members of the Professional Expert Group have other full time jobs, and the work they undertake for Altogether Autism work is only a small component of their work. Most contact is via email and telephone. Members are paid an honourarium time and advice provided to Altogether Autism.
Q: Can people have direct access to the Professional Expert Group?
A: No – people must make requests through the normal contact channels provided as the first point of contact. When an information or advice request is complex or requires expert advice we will pass the request through to relevant members of the Professional Expert Group for input. Usually the advice and information provided from the Professional Expert Group will be based on the initial enquiry only, however, in some cases the Clinical Consultant may telephone the person requesting information.
Using the same points of contact for enquiry the Professional Expert Group are also able to provide written advice and comment to professionals working with a person with ASD, as well as to the person themselves and/or their family or advocate.
Q: Does Altogether Autism guarantee all the services listed on the website?
A: No, we simply hold information about these services. Please read and note the “disclaimer” which holds for all services and professionals listed in the database and on our website.
Q: What changes are being made to the Altogether Autism website?
A: Ongoing development of the Altogether Autism website will expand the range of information available on the site – soon we hope to include:
- Articles written by the Professional Expert Group
- Audio visual files of talks, addresses, and presentations that can be downloaded
In the longer term we would also like to develop
A message bulletin board where people can post questions and discussions, and where the Clinical Consultant, and/or members of the Professional Expert Group may post responses. The information will remain on the bulletin board for future reference.
Q: What were the results of the Customer Satisfaction Survey?
A: A Qualitative Customer Satisfaction Survey was conducted at the end of June 2008 to gauge customer satisfaction with the service for the period January to June 2008. A 10% sample of people who had contacted the service in the last 6 months was surveyed. A person independent of Altogether Autism was employed as a telephone evaluator to conduct the survey therefore ensuring honest and unbiased recording of the feedback. People were asked to rate the service (from 1 being very unsatisfactory to 5 being excellent or outstanding) and to make any additional comments. Key outcomes were:
- Overall feedback about the extent to which the information provided assisted the person, and was useful and specific to their requirements was rated as excellent or above satisfactory in 75% of people surveyed
- High levels of satisfaction were reported with the friendly and respectful manner people were dealt with when contacting the service for information, with 70% surveyed rating this as excellent
- Overall survey participants reported satisfactory, above satisfactory and excellent in relation to the length of time it took to receive their information pack. However, in a few instances people reported that it had taken too long to receive their info pack. (This situation has been rectified and an additional Information Officer has been recruited to meet increasing demand.)
- 85% of people surveyed reported excellent or above satisfactory regarding their contact with the ASD Advisor in their area and how useful this had been
- The majority of participants reported that they had not accessed the Altogether Autism website or provider database. However where people had used the website, all reported this as excellent or above satisfactory. These results have identified the need to further promote the website and additional funding has been secured through the Ministry of Health contract to develop and promote this further.
About Autism Spectrum Disorder in New Zealand:
Q: How many people in New Zealand have ASD?
A: UK research quoted in the New Zealand Autism Spectrum Disorder Guideline suggests that 116.1 per 10,000 people have ASD, and that 38.9 per 10,000 children have ASD. The Guideline estimates that there are over 40,000 people with ASD living in New Zealand, most being adults who are undiagnosed.
Q: How is the $18.6 million budgeted for ASD by the Ministry of Health being spent?
A: The NZ ASD Guideline Implementation Advisory Group provides advice to the Ministry of Health on where the funds should be directed. The Implementation Advisory Group will issue periodic newsletters and updates which will be lodged on this website.
Tanya Breen is Altogether Autism’s representative on the NZ ASD Guideline Implementation Advisory Group.
Martyn Matthews, IDEA Services
John Greally, Person with autism
Dr Oliver Mudford, Academic, NZABA
Prof Jeffrey Sigafoos, Academic
Alyson Bradley, Person with autism
Tanya Breen, Altogether Autism
Wendy Duff, Autism NZ
Dr Matt Eggleston, Psychiatrist, Canterbury DHB
Keryn Mells, Autism researcher, Trainer
Dr Justin Barry-Walsh, Psychiatrist, Capital and Coast DHB
Jenny Tippett, RTLB
Phillipa Clark, Paediatrician, Auckland DHB
Kahurangi Apiata, Ohomairangi Trust Early Intervention Service
Mary Henderson, Parent
Matt Frost (IAG Chair), Person with autism
Hilary Stace, Parent
Q: What is in the Promotional ASD Guideline pack?
A: These packs contain: The full New Zealand Autism Spectrum Disorder Guideline, Summary Version, Maori Version,Brochures on the New Zealand ASD Guideline, and Brochures on Altogether Autism