Disability in New Zealand

Evidence based Guidelines are produced to assist health professionals, educators and consumers make decisions about education, support and care in specific circumstances. Research has shown that if properly developed, communicated and implemented, Guidelines can improve outcomes.

The ASD Guideline is intended for use by primary care practitioners, specialists, education professionals, policy makers, funders, parents, carers, and any others who make provision for individuals with ASD.

ASD is a life-long developmental disability, which can affect communication, social interaction and behaviour. Its form and severity can vary from person to person, but people with ASD share some difficulty in making sense of their world. A broad range of pervasive developmental disorders, including Asperger Syndrome, are now considered to be part of the autistic spectrum.

In 1998, the Government commissioned a review of autism services across key sectors now known as the Curry Report. It was pivotal in identifying gaps in services and made a number of recommendations to improve the quality of ASD-related services. Key issues identified in the review included a lack of co-ordinated services and cross government leadership difficulties.

As a result the Ministries of Health, Education and Department of Child, Youth and Family set up a cross government officials group to provide oversight of policy and services for individuals with ASD. This group recognised the need for an evidence-based Guideline. An ASD Guideline Steering Group was also set up to help guide the work of the project team.

A wide range of experts and professionals have participated in the development of the draft ASD Guideline including representation from families of children and adolescents and adults with ASD, Child Psychiatrists, Psychologists, Occupational Therapists, Speech Language Therapists, Nurses, Paediatricians, educational researchers, education practice advisors, Educational Psychologists, the New Zealand Guidelines Group (NZGG), disability academics, Māori advisors, Pacific Advisors, Needs Assessment and Service Co-ordination (NASC) services, disability service providers and primary healthcare physicians.

The ASD Guideline was developed in three separate sections by three workstreams and experienced Māori and Pacific researchers. The three workstreams, each with a particular expertise, were set up to represent different aspects of ASD. The Paediatric Society led workstream one and addressed assessment and diagnosis in children and pharmacotherapy in children. The Ministry of Education led workstream two and addressed educational issues and training issues for professionals and parents. The Ministry of Health led workstream three and addressed issues for older children and adults, including diagnosis, assessment and interventions, as well as support across the age spectrum. All the completed sections were then merged and integrated into one overall evidence-based ASD Guideline.

The draft ASD Guideline is a summary of the best evidence currently available. Where no evidence is available, but guidance is needed, recommendations for best practice have been developed through a systematic consensus process.

The ASD Guideline is divided into five parts, with chapters on Māori and Pacific People’s perspectives.

Two additional chapters cover the perspectives and experiences of Māori and Pacific people with ASD and explore issues of information needs, diagnosis, assessment, support, access, services and treatment decisions for these populations.

To finalise the ASD Guideline the Ministries of Health and Education gave the sector the opportunity to contribute to the document.

A three month written public consultation process was undertaken to gain sector feedback across the health, disability, education and social service sectors as well as feedback from families, whanau and people with ASD (December 2006 to March 2007). The consultation process involved a mail out on request of the draft ASD Guideline and submission booklet. Copies were also available on the Ministry of Health website with links from the Ministry of Education website. At the same time an expert peer review process was undertaken with international experts in ASD.

The Ministries of Health and Education are committed to ensuring that the ASD Guideline will lead to improved services and so have already commissioned an impact analysis. The primary purpose is to assess the likely impact of implementing the key recommendations in the Guideline, which in turn will assist government decisions regarding its implementation.

The impact analysis will identify and prioritise what is required to action the recommendations in the draft ASD Guideline, and generate options for implementation. It is expected that Health Outcomes International (HOI) will:

Following completion of this work government officials will prepare a report to Ministers by 30 June 2007 providing information and advice about implementation including proposals for priority areas, associated costs and key actions which will be addressed through an implementation or service development plan