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| Autistic Spectrum Disorder Resources and Initiatives |
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| Author : Ruth Dyson, Address to Autism NZ, Wellington branch
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| Created : 04 Oct 2002
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| Last Revision : 04 Oct 2002
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Rau rangatira maa, tenei te mihi ki a koutou i runga i te kaupapa o te ra.
Tena koutou, tena koutou, tena koutoa katoa.
[Distinguished guests, greetings to you gathered here for this purpose today. Greetings once, twice, three times to you all.]
Good morning and thank you for the opportunity to speak today.First I would like to take this opportunity to applaud you for your ongoing work and commitment to supporting and advocating for people with autism and their families, and working closely in partnership with government departments and services providers.
When I spoke to you at last year’s AGM, I outlined some of the key issues facing people with Autistic Spectrum Disorders (ASD) and their families.
I acknowledged that we were still a long way from having a society where people with autism feel valued and accepted, and that we still had a lot to do to ensure the carers of people with autism are themselves properly cared for.
We were making positive progress, however. The New Zealand Disability Strategy had been launched – and that is already having a noticeable impact in a number of areas – and work had already been started to address many of the issues identified in the earlier Autism Services in New Zealand report.
I mentioned specifically, the Early Bird Programme pilots, the Ministry of Education’s programme to help teachers develop a better understanding of the impact of ASD, and plans to develop guidelines for relevant professionals and government agencies to improve services for people with ASD.
I would like now to update you on those initiatives, as well as outline other specific projects in various parts of the lower North Island that are being developed to improve services.
EarlyBird
As you know, the EarlyBird programme, which was developed in the UK, aims to improve families’ understanding of autism and teach communication and behaviour strategies. This is jointly funded by Education and Health, with much of the equipment funded by AMP.
Eighteen families took part in the pilots in Wellington and Nelson areas during 2000-2001. All indications show the programme has been successful, so it is being rolled out nationally over the next three years.
The originator of EarlyBird, Dr Jane Shields, was in New Zealand last November to discuss adaptations to the programme for the New Zealand context and to train and accredit a group of “trainers of trainers”. This means that providers of the programme can now be trained in New Zealand, rather than going to the UK as was previously required.
The Ministries of Education and Health are spending over $900,000 to fund the programme over the next three years and this is already helping to increase the capacity to provide the programme throughout the country.
The Ministry of Education is also spending a further $96,000 on an independent evaluation of the programme.
Autism NZ and their co-contractor, Spectrum Care, are working with the Ministries of Education and Health to prioritise provision of the programme to the areas of greatest need.
Some of these needs were identified through the survey of Autism NZ members last year.
Developments
Lack of information and skills in New Zealand have been identified as major issues. This came through strongly in the survey of Autism NZ members. In response, the Ministry of Education has funded two professional development initiatives.
The first is TIPS, which is a 10 week whole-team programme aimed at primary school staff. Parents, teachers, teacher aides and other specialists train together and develop an in-depth understanding of ASD, acquire effective teaching and learning strategies and help set up support and information networks in their teams.
The programme has been successfully piloted in the Wellington area. It is now being extended to the lower half of the North Island, and after three years will be extended nationally.
The second initiative is for Resource Teachers in Learning and Behaviour (RTLBs), who are a common source of support for students with ASD, yet previously had no ASD-specific component in their training.
Last year nearly $100,000 was put into developing an ASD-specific course and providing the course to 40 RTLBs. A further $50,000 is being spent on training another 44 RTLBs this year.
Diagnosis and treatment services
Diagnosis of ASD for children in the early years is crucial to ensuring good support for both the child and the family. I am very aware, however, that early childhood intervention has not always been timely.
This has been partly due to lack of funds and partly due to the lack of available people who have the experience and expertise to work in child development teams.
This is beginning to be addressed in different ways. For example, in Hawkes Bay the Ministry of Health has been providing funds to upskill the Child Development Team so that its community focused early intervention programme for children can include children with ASD.
In Palmerston North, the Ministry is funding a new child psychologist position and one additional occupational therapist (OT) position.
The Ministry intends to increase funding in other child development teams in the Wellington region, and will be making a decision about this at the end of this week.
Another reason why some families find it difficult to access diagnosis and assessment services is the lack of clarity on funding services for people with ASD who may also have another diagnosis such as an intellectual disability or Attention Deficit Hyperactivity Disorder (ADHD).
In response to this the Ministry of Health is proposing to set up a pilot programme in Hawkes Bay later this year to increase access to diagnosis services for children by improving coordination of services and raising greater awareness of ASD among local health professionals.
The Ministry has also been focussing on educating Needs Assessment and Coordination Services (NASC) on key issues for people with ASD and their family. As a result, some NASC services are already adapting their services to be more responsive to the individual and the family.
While this is still in the early stages, the Ministry is receiving positive feedback from families and relevant service providers about the improvements in the NASC process.
Respite care
Another key issue for families in the region is the difficulty in accessing suitable respite care.
Recently IHC have completed work on a new respite facility in the Hutt area, where day programmes and holiday programmes are also available.
The Ministry is now working with IHC to improve and extend its respite facilities in Palmerston North.
In the Wellington and Tararua regions, the Ministry is intending to extend a service which has been successfully piloted in Wanganui that provides training for informal carers and coordinates respite care, including for children with ASD.
In Hawkes Bay a holiday programme for children with high needs has been started at Hohepa – the majority of children accessing these services have ASD. This service has grown and continues to be well received.
In Hawkes Bay and Tairawhiti, the Ministry is developing a buddy system as an alternative to other respite provision. This is delivered by a trained pool of carers who are matched to the children and who buddy them on outings and mainstream holiday programmes. The target age group is 5–21 years. Young adults will be matched with peers of similar age and interests.
Vocational services options for adults including people with ASD
This Government is concerned about options for vocational services for many adults with disabilities, including those who have recently left school.
For some adults with ASD and their families, finding appropriate day and vocational services can be especially difficult. This is because they often have high support needs, and may require one-on-one specialised staffing assistance. Currently there is only a small pool of providers who can provide this type of support.
The Ministry of Health is therefore funding a research project to develop models for appropriate day and vocational services and for employment support for people with ASD. This is due to be completed by the middle of next year. The information will be used to prioritise and develop services, and inform planning and funding for this area.
The Government is also developing its new direction for vocational services for people with disabilities. In the document Pathways to Inclusion the Government has agreed that the aims of vocational services are:
· To increase the participation of people with disabilities in employment, and
· To increase the participation of people with disabilities in communities.
There is a five-year implementation timeframe for the changes set out in Pathways. Part of the implementation process will involve the key government agencies (such as the Ministry of Social Development, the Ministry of Health, and the Ministry of Education) working together to further develop day and vocational options and packages so people with disabilities receive the vocational services and support they need.
This work will therefore also improve vocational service options for people with autism.
ASD Best Practice Guideline project
Following on from what I had referred to last year, the Ministry of Health has commissioned the development of ASD Best Practice Guidelines for health and disability and educational professionals, and for social service agencies.
This recognises that individuals with ASD, and in some instances the family and whanau, often need to access a number of support services across different agencies, which is often difficult to coordinate. It is also important that professionals are able to provide individuals with ASD and their families’ accurate and useful information.
The guidelines project, which has just begun, will take two years to complete (by October 2004) and will be developed in three stages.
The Paediatric Society have been contracted to undertake the first phase for children of 0-5 years, including etiology, diagnosis, genetics, screening and assessment, family issues, medical management and pharmacotherapy.
The second phase will be developed in partnership with the Ministry of Education and will focus on management techniques and interventions, including applied behavioural analysis as a therapy, and issues for young adults moving through different life stages, and having options for leaving school.
The third phase is for adults and focuses on disability support services, including respite care, supported and independent living options, and day and vocational opportunities.
There will be a technical expert group to oversee this work, including paediatricans, child psychiatrists, educationalists, needs assessors and other professionals. It is also important people with ASD and people who can represent the needs of families are part of this work, so a stakeholder group is also going to be convened, including representatives from Autism New Zealand.
We are also looking to include representation from Maori and Pacific communities and new migrant groups who may have specific issues relating to their culture.
This is an ambitious project, which can only be achieved through working with all those involved in working with people with ASD.
The stakeholder group is going to be convened in October 2002.
The Ministry of Health will provide more detailed information through Disability Services Directorate newsletters and Update newsletters for Special Education.
Conclusion
The initiatives I have outlined – which are all in accordance with the objectives of the Disability Strategy – show that we are continuing to make good progress in improving services for people with ASD and their families.
There is still much to be done, of course, but I think increasingly we can see a more positive outlook for the future.
I am sure that if you invited me back again next year I would be able to expand a lot further on the good progress we have made to date. I would look forward to it.
Thank you.
This article is from Beehive.govt.nz.
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