The act requiring the new educational standards regime was passed through all its stages in Parliament in 24 hours just before Christmas 2008. It did not go to a select committee where the public, autism advocates, and those with lived experience, could make submissions. This was unfortunate as some of us could have pointed out the negative implications for our autistic students, most of whom do not fit this ‘one size all’ approach.

 My concerns were, firstly, that our autistic students typically have strong strengths and weaknesses across curriculum areas, and limiting assessment to only two areas would give a negative and limited view of our children’s abilities. Secondly, we know that some schools only grudgingly accept our children, and they are quick to find an excuse to ask them to limit their attendance, or even leave. If these standards are to be translated into league tables, schools will not be keen on our ASD students who may not excel in the narrow curriculum areas to be reported on.

 Under the new system, children from early in primary school will be assessed against some very narrow requirements. Temple Grandin has already warned of the negative effects on autistic children of the ‘No Child Left Behind’ regime in the US, which our new regime  is based on. In her recent book As I see it (2008), she describes a parent’s frustration that in order to pass the standard, the child was denied playtimes or anything that interested her, as she did repetitive drills to learn the required material.

 English autistic savant, Daniel Tammet, has written about his own education and describes the autistic student’s typically uneven learning profile in his books Born on a Blue Day and Embracing the Wide Sky. He personally found the physical process of writing very difficult from a coordination point of view, progressing slowly and with frequent errors. Although brilliant with pure numbers, when letters or symbols were introduced into maths, as in algebra, he became confused. An additional requirement of our numeracy testing will be that students show their workings. In Embracing the Wide Sky which includes discussion on intelligence and how the mind works, Daniel describes the visual and aural patterns by which he does his mathematical and linguistic learning, and such pattern thinking is typical of autistic thinking. But it does not fit the standards-required-template. Daniel also shows that knowledge is culturally constructed and what has significance for one culture (such as the strawberries used for counting in our numerical standards requirements) may be incomprehensible to other cultures.

Reporting of these standards to parents will be on Plunket type graph, showing parents and students in a clear visual way that those below the line are already educational failures from 5 years old. How many will be on the autistic spectrum and already finding school a negative experience? That is not the way to increase engagement, participation or achievement.

Unfortunately, this focus on such a limited view of literacy and numeracy in our standards has also meant cuts in other school support. School advisors in areas such as science, art and music have been made redundant, as have many early childhood advisors. Yet these are the experts who teach the teachers about teaching and learning. We also know that libraries can be a safe place at school for our children – but now school library advisors in the National Library have been cut. And these come on top of cuts to educational lifelines for our autistic adults such as night school classes (and large areas of New Zealand will have no night classes at all from next year) and cuts to the Training Incentive Allowance whereby our autistic adults on benefits can improve their lives by access to tertiary study.

The autism sector is right to be alarmed at the cumulative effects of all these negative political changes on the ability of autistic students to achieve their acadenic potential.  The standards regime will be  implementated from the beginning of the 2010 school year. For the sake of our autistic students, we must pay attention and report what happens.

Together they have formed a research team to look at how young people with intellectual impairment like them can have more control over the transition process and resolve barriers many face in going on to work or independent living.  The statistics reveal that, compared to people without intellectual disability, people with an intellectual disability are more likely to be unemployed, have fewer qualifications, have fewer friends and live at home or with caregivers.  And there is a big gap between government policy and what actually happens.

So what can be done to address this? Their research questions include asking how young people can have more choice and control over their lives in this transition from school to post school lives.  Their focus groups include those with answers: young disabled people both at school and school leavers, famlies, educators and employers.

They have been jointly involved in research design. I asked what themes are emerging from their research as to what young disabled people want? After carefully explaining to me that there are ethical and confidential issues around their research which means they can not tell me what individual people might have said, they can reveal that some of the things the young people want are real jobs which pay proper wages, friends, to go flatting, to get married and have a family (ie the same things non-disabled young people want).  The researchers want to be valued for who they are and what they do and this, of course, includes wanting to have their research valued, to make a difference and to be paid, professional researchers. Colin is applying for funding so this can happen.

These two young people are impressive presenters on their topic and I’m sure are very skilled and polite facilitators of the focus groups.

When those with insider knowledge and lived experience conduct research it is very powerful.

Best wishes to them all.

(This was one of several papers presented at the New Zealand branch of ASID (the Association for the Study of Intellectual Disability) in Hamilton 26-27 August on how people with intellectual impairment can be central to the research process.)

Autism Spectrum Disorder

June 2009 Newsletter 

This newsletter brings together information about the progress being made to improve autism services for people in New Zealand from some of the key groups who have been involved.  It updates the information that was provided in the March 2009 newsletter. The last newsletter was structured by organisation.  This newsletter is structured by the areas where progress is being made, and references the key parts of the New Zealand Autism Spectrum Disorder Guideline (NZ ASD Guideline) that are being worked on.  This newsletter focuses on activities that are coordinated nationally.  But the NZ ASD Guideline belongs to everyone in the ASD community, and its implementation cannot rely on what is done nationally.  Indeed, any implementation is in the end done by people in their local communities and families.  If you have been involved in a project or activity that helps to implement the NZ ASD Guideline and you would like to share that experience, then please let us know.  You can contact the New Zealand Guidelines Group through asd@nzgg.org.nz.  You can use the same email address to ask questions in relation to any of the projects outlined below.

 Implementation Priorities

The Ministries of Health and Education agreed a set of priorities for the next three years of NZ ASD Guideline implementation.  They made this decision after discussions with the ASD Implementation Advisory Group, the ASD Inter-sectoral Advisory Group, and a group of senior officials from a range of government departments. The priority areas are (not in any particular order): 

1. Assessment and diagnosis
2. Support to strengthen families
3. Interventions
4. Respite
5. Coordination

The next parts of this newsletter provide updates on the projects that are underway in each of these areas. 

Assessment and Diagnosis

There are five projects currently underway in this topic area.  They are: 

1. Development of a handbook for assessment and diagnosis for education and health specialists involved in performing assessments and making diagnoses

·         Leading organisation: NZGG, supported by an expert reference group

·         Goals: a.      To provide education, health and disability practitioners with a cut-down version of the NZ ASD Guideline, targeted at them, and focused on assessment and diagnosis.  b.      To provide options for the dissemination of the handbook.  c.      To provide analysis of options available for tools that will assist the standardisation of assessments.

·         Links to NZ ASD Guideline Recommendations: All recommendations from Part One of the NZ ASD Guideline. Also 2.3.02 – 2.3.15, and the sections of Part 6 that relate to specialists, and relevant recommendations from Parts 7 and 8 relating to the involvement of Maori and Pacific carers in the assessment process.

·         Status: The handbook has been drafted.

·         When can you expect to see something from the work? The content should be completed by the end of June 2009.  It will be accompanied by a paper that provides options for the distribution of the Handbook; which should occur prior to Christmas 2009. 

2. Development of training materials for specialists in the assessment, treatment and management of ASD

·         Leading organisation:  Werry Centre, supported by an external reference group

·         Goals: to develop a training resource for specialists (paediatricians, psychiatrists, clinical psychologists & educational psychologists) in the assessment, treatment and clinical management of ASD for young people aged between 0 and 19.

·         Links to NZ ASD Guideline Recommendations: All recommendations from Parts One and Four of the NZ ASD Guideline, the sections of Part 6 that relate to specialists, and relevant recommendations from Parts 7 and 8 relating to the involvement of Maori and Pacific carers in the assessment process.

·       Status: The Specialist training package is in its final stages and currently being reviewed by the Ministries of Health and Education. Once the training package is finalised further work will be required to scope how it will be implemented (delivered).

·         When can you expect to see something from the work?  The final draft of Specialist training package is expected by the end of June 2009. An implementation plan will then be established so that the training can commence.  

3. Review/ Revision of core Needs Assessment and Service Coordination (NASC) Standards, Protocols, Guidelines and Practice Resources

·         Leading organisation:  Needs Assessment Service Coordination Association Incorporated (NASCA)

·         Goal: To enhance NASC practice through reviewing and updating its existing standards and guidelines and good practice resources

·         Links to NZ ASD Guideline Recommendations: Broadly takes into consideration all parts of the NZ ASD Guideline

·         Status: Project well underway. A review of the key NASC documents is underway.  Workshops with NASC managers occurred in May and a stakeholder workshop is planned for June.  The workshops aim to test out findings from the document review and gather feedback on issues.  Further workshops will occur in late June to provide input to the development of the final report and implementation plan

·         When can you expect to see something from the work: A final draft of the revised NASC Standards and Guidelines is due in early July 2009. 

4. ASD Specific Guideline for NASCs

·         Leading organisation:  NASCA

·         Goal: To develop a new ASD-specific Guideline for NASCs

·         Links to NZ ASD Guideline Recommendations: Part 1 (overview recommendations 1 &2) Part 2 (overview recommendations1,2,3,4,5,9,11,12)  Part 3 (overview recommendations 1,2,6 &11), Part 4 (overview recommendations 1,3,&5), Part 5 (overview recommendations 1,2,3,4,5 7,9,10,11,) and generally Part 7 and 8.

·         Status: The project has started. Peer review workshops with NASC managers occurred 21/22 May and a stakeholder workshop (with consumers and front line NASC staff) occurred on 29 May, with the aim of getting input into the design and development of the ASD-specific Guideline for NASCs.

·         When can you expect to see something from the work: Finalised ASD-specific Guideline for NASCs will be completed by the end of June 2009. 

5. Development of NASC Resources

·         Leading organisation:  NASCA

·         Goal: To develop new resources and tools to support the revised NASC Standards/ Guidelines and ASD-specific Guideline for NASCs.

·         Links to NZ ASD Guideline Recommendations: Part 1 (overview recommendations 1 &2) Part 2 (overview recommendations1,2,3,4,5,9,11,12)  Part 3 (overview recommendations 1,2,6 &11), Part 4 (overview recommendations 1,3,&5), Part 5 (overview recommendations 1,2,3,4,5 7,9,10,11,) and generally Part 7 and 8

·         Status: Project well underway. This project is working in parallel with the development of the ASD-specific Guideline for NASCs, as the resources will need to support the ASD NASC Guideline. Peer review workshops with NASC managers occurred on 21/22 May. Valuable information on existing resources was gained as well as the need for robust tools and resources to assist in ensuring that the ASD NASC Guideline is implemented. A workshop with stakeholders (consumers and front line NASC staff) occurred on the 29 May with the aim of getting input to the design and development of the ASD Resources.

·         When can you expect to see something from the work: Resources will be developed by mid July 2009. Training for NASC staff in the new NASC ASD Resources will commence in July 2009. 

Support to Strengthen Families

There are five projects currently underway in this topic area.  They are:  

1. Improving information and advisory services

·         Leading organisation:  Altogether Autism

·         Goals: To ensure that that NZ ASD Guideline and its messages and recommendations are widely distributed amongst the ASD community.

·         Links to NZ ASD Guideline Recommendations: 2.2.1, 2.2.3, and the recommendations from Parts 7 and 8 relating to the language-appropriate information provision.

·         Status: Altogether Autism has been funded to support communication of the NZ ASD Guideline.

Activities undertaken include:

                                               i.            Website development 

                                            ii.            Targeted media follow-up

                                          iii.            Developing promotional packs for stakeholders

                                         iv.            Identifying conferences for communicating the NZ ASD Guideline

                                           v.            Distributing conference materials

                                         vi.            Library development

                                        vii.            One off training for professionals

                                      viii.            Evaluating the reach and effectiveness of the NZ ASD Guideline distribution 

Additionally: 

                                            i.            Pod casts are being been developed for the website which will soon include audio and video files for download of lectures and talks undertaken for Altogether Autism. Pod casts will also include people’s experiences of living with autism. These will be accessed from the Altogether Autism.

                                           ii.            Altogether Autism has developed a reference library accessible to the public.                                           iii.            Training for professionals using a tool called ADI-R is planned for August and September in Hamilton and

                                         iv.            In May a questionnaire has been sent to a sample population of the people who were sent the guideline for feedback on the guideline.  The feedback will assist future communications and planning. Feedback from the survey will be analysed by the end of June. This will inform the Ministries of Health and Education about areas to target further distribution of the NZ ASD Guideline. 

2. Parent Education

·         Leading organisations:  Ministry of Health, Ministry of Education

·         Goals: To provide quality-driven parent education programmes that will improve parents’ knowledge of the impact of ASD. Focused on parents of young children (i.e. before the child starts school), the programmes are expected to enhance parents’ ability and confidence to support their children to communicate, manage themselves and interact socially.

·         Links to NZ ASD Guideline Recommendations: 2.2.1, 2.2.2 and 2.2.3, plus detailed information on pages 71 and 72.

·         Status: Currently, the Ministries of Health and Education jointly purchase EarlyBird from Autism NZ. The Ministries have been running an open procurement process from November 2008 until the present.

·         When can you expect to see something from the work? The process is expected to conclude with contract(s) with one or more providers by July 2009. 

3. ‘tips for autism’

·         Leading organisation:  Ministry of Education and Ministry of Health

·         Goal: To extend the reach of the ‘tips for autism’ programme through funding additional programmes and additional facilitators

·         Links to NZ ASD Guideline Recommendations: Overview 2.1, 6.6, 6.8; Part 4, 4.3.3; Part 6: 6.17.

·         Status: ‘tips for autism’ provides teams of parents, carers and school teachers with practical knowledge and skills to support children with ASD who are between the ages of 5 and 12.  Each team completes a comprehensive long term plan and short term goals which they can action the day after the course ends. ‘tips for autism’ was written for the New Zealand context and is regularly updated to reflect new evidence and changing policies.  In 2009 (up until the end of May), ‘tips for autism’ has been delivered in 7 locations (in Manukau (Auckland), Porirua (Wellington), Invercargill, Gisborne, South Canterbury, Hawkes Bay and North Shore  (Auckland)) with a further 11 courses planned (Auckland Central, Christchurch, Stratford (Taranaki), Hamilton, Nelson, Whangarei, Bulls (Manawatu), Central Otago, Taumaurunui, Rotorua and one location to be confirmed). 

 ·         When can you expect to see something from the work?  It is happening right now. Further information and applications for the course are available at www.tipsforautism.org.nz. 

4. SPELL evaluation

·         Leading organisation/s: Kiwikiwi Research and Evaluation Services Ltd, Ministry of Health

·         Goal: To evaluate the success of the SPELL programme.  This will inform the Ministry of Health as it determines whether or not to continue funding the programme.

·         Links to NZ ASD Guideline Recommendations:  2.2.1

·         Status:  The evaluation has been completed and is under consideration by the Ministry of Health.

·         When can you expect to see something from the work?  A draft of the report has been submitted to the Ministry.  It will be finalised in June 2009. Decisions will be made following consultation with the Implementation Advisory Group and the cross sectoral Senior Officials Group. Autism NZ continues to provide this education programme. 

5. Bright Sparks: Programme Enhancements

·         Leading organisation/s: Autism New Zealand (Auckland Branch), Ministry of Health

·         Goals: To build on the positive evaluation of Bright Sparks by further developing and documenting the programme.

·         Links to NZ ASD Guideline Recommendations: Part 5 of the Guideline, 5.2.1-5.2.8

·         Status: Following the evaluation of Bright Sparks; an Auckland community-based recreational based programme for children with ASD, the Ministry has contributed to one-off funding to respond to recommendations contained within the report.

Work is continuing on programme enhancements with the current focus on the access of the programme to Maori and Pacific children and young people and their whānau and aiga.

·         When can you expect to see something from the work?  The work remains on schedule for completion on 30 June 2009.    

Interventions

There are three projects currently underway in this topic area.  They are:  

1. Family/Whānau community outreach services

·         Leading organisation: Ministry of Health

·         Goal: To provide ASD-specific family and whānau community outreach services to the ASD community in Auckland

·         Links to NZ ASD Guideline Recommendations: 1.1.1,1.4.6, 1.4.7, 1.4.9

·         Status: The Ministry of Health has negotiated a contract with Autism New Zealand. Autism New Zealand will delegate responsibility to Ohomairangi Trust and the Auckland Branch of Autism New

 ·         When can you expect to see something from the work? The new services will be available by August 2009. 

2. ASD-specific communication and behaviour support services

·         Leading organisation: Ministry of Health

·         Goals: To provide ASD-specific communication and behaviour support services to the ASD community in Auckland

·         Links to NZ ASD Guideline Recommendations: 4.3.2, 4.3.4, 4.3.5

·         Status: The Ministry of Health is negotiating this contract at present.

·         When can you expect to see something from the work? The new services should be available prior to Christmas 2009. 

3. Assessment of the feasibility of having ASD-specific behaviour support services

·         Leading organisations:  Bennett & Bijoux Ltd, Ministry of Health

·         Goals: To assess the feasibility, in the New Zealand context, of having behaviour support services that are developed specifically for people with lived experience of ASD

·         Links to NZ ASD Guideline Recommendations: 4.3.7

·         Status:  Bennett and Bijoux have this contract. They have established a Specialist Advisory Group to advise them with this work

·         When can you expect to see something from the work? The report will be presented to the Ministry in August/September 2009.  Whatever steps are taken after that will depend on the findings of the report.  

Respite

There are two projects currently underway in this topic area.  They are:  

1. Extending disability respite services

·         Leading organisation:  Ministry of Health

·         Goals: To increase access to respite services

·         Links to NZ ASD Guideline Recommendations:5.2.6

·         Status: In progress

·         When can you expect to see something from the work?  The Ministry has now signed contracts for the five following services:  i.        Waikato service for people 17 years of age and over with an intellectual disability and/or ASD – Spectrum Care Trust

ii.          Bay of Plenty/Lakes (to be located in Tauranga) service for people 17 years of age and over with an intellectual disability and/or ASD – Spectrum Care Trust

iii.         Bay of Plenty/Lakes (to be located in Tauranga) service for people under 17 years of age with an intellectual disability and/or ASD – The Open Home Foundation

iv.         Hawke’s Bay service for people under 17 years of age with an intellectual disability and/or ASD – The Open Home Foundation v.    Wellington service for people under 17 years of age with an intellectual disability and/or ASD – The Open Home Foundation

 These services are currently in set-up phase.  The purchase proposal process is not complete and contracts for the provision of other services may be signed in other areas in the future.  Respite continues to be an important area of priority. 

2. Describing ASD-specific respite services

·         Leading organisations:  New Zealand Guidelines Group, Acqumen Ltd supported by the Implementation Advisory Group

·         Goals: To describe ASD-specific respite services

·         Links to NZ ASD Guideline Recommendations:  5.2.1 – 5.2.8 ·         Status: The paper has been completed and submitted to the Ministry of Health, along with a draft service specification that could be used in any changes to respite services.  The Ministry is now considering how to progress this, within the context of the overall increase in disability respite services.

·         When can you expect to see something from the work?  As it is under consideration, it is difficult to forecast what will happen next.  The Ministry should make decisions prior to Christmas 2009. 

Coordination

There are three projects currently underway in this topic area.  They are: 1)      Business case for DHB Developmental Coordination

 ·         Leading organisations: New Zealand Guidelines Group, Ministry of Health

·         Goals: To develop new resources and tools to support the revised NASC Standards/ Guidelines and ASD-specific Guideline for NASC ·         Links to NZ ASD Guideline Recommendations: 1.2.9, 2.4.1- 2.4.4, 7.3

·         Status: The Ministry has conducted preliminary consultation with child development centres and with the ASD Implementation Advisory Group.  As a result of this work, the Ministry decided to complete a formal business case with options for how best to achieve the outcomes desired by the guideline.  Work has commenced on this business case.

·         When can you expect to see something from the work?  The business case will be available to the Ministry by September 2009.    2)      NASC ASD Coordination 

 ·         Leading organisation/s: NASCA

·         Goals:

a.      To develop and establish a NASC ASD coordination function to support existing staff identify, plan and review packages of service/ supports required to meet the prioritised needs and goals

b.      To improve knowledge skills, attitudes of NASC staff

c.      To support NASC managers and team leadersd.      To improve linkages with and across existing disability support services ·         Links to NZ ASD Guideline Recommendations: Part 1 (overview recommendations 1 &2) Part 2 (overview recommendations 1,2,3,4,5,9,11,12)  Part 3 (overview recommendations 1,2,6 &11), Part 4 (overview recommendations 1,3,&5), Part 5 (overview recommendations 1,2,3,4,5 7,9,10,11,) and generally Part 7 and 8

·         Status: Project started. Initial concepts and approaches have been worked through with NASC managers at peer review workshops in late May. A stakeholder workshop (with consumers and front line NASC staff) occurred on 29 of May aimed at getting input to the design and development of the ASD Coordination Function 

·         When can you expect to see something from the work? The ASD Coordination Function will be trialled from the end of June 2009 with the view of full implementation being completed by June 2010. 3)      Review of interagency protocols (Equipment and Therapy) between Ministry of Education and Ministry of Health for school aged children 

·         Leading organisation/s : Ministries of Health and Education, Acqumen Ltd

·         Goals:  To review the current Equipment and Therapy (physiotherapy and occupational therapy) protocols and make recommendations for revising the protocols within existing policy and resourcing. This includes:

a.      achieving the best outcome for children and young people and their families/whanau

b.      clarifying funding roles and service provision responsibilities

c.      maximising cooperation between agenciesd.      development of complementary roles and responsibilitiese.      assisting families/whanau and fundholders in making appropriate referrals ·         Links to NZ ASD Guideline Recommendations:2.4.1- 2.4.4, 3.2.4.5, 4.1.1-4.1.5

·         Status: Following consultation with key stakeholders and families of students in four locations nationally and feedback from a questionnaire distributed to individuals and key organisations, the protocols are being updated into:

a.      A Memorandum of Understanding

b.      Therapy and Assistive technology/equipment Operational Guideline: Roles and Responsibilities.When can you expect to see something from the work? 30 June 2009.  Once the revision is complete further work is required to scope how the above documents will be implemented  

Associated activity led by the Ministry of Education   In addition to the work that is led by the Ministry in the fields of parent education and teacher support (noted above), the Ministry is also leading the following projects in support of the NZ ASD Guideline: 

1. Living Guideline

·         Leading organisation:  New Zealand Guidelines Group, Ministry of Education, supported by a Living Guideline Group.

·         Goal: To ensure that the NZ ASD Guideline remains up-to-date and relevant as evidence changes.  This process will not add new topics to the NZ ASD Guideline, but keep the current topics up to date.  It will focus on areas where the evidence since 2004 has changed enough to warrant changing a NZ ASD Guideline recommendation.

·         Links to NZ ASD Guideline Recommendations:  Not directly linked to any as this project is about ensuring that the recommendations remain derived from current evidence.

·         Status:  A Living Guideline Group has been convened and met in early June, chaired by Professor Ian Evans (with Matt Frost as the deputy-Chair).  Its first job is to identify topics in the NZ ASD Guideline where the evidence has changed enough to possibly change a recommendation.  Applied Behavioural Analysis (ABA) is one topic that is already confirmed. The Ministry of Education recently funded two literature reviews that can be put through the living guideline process to determine if the evidence identified in the reviews requires changes in the current recommendations about ABA.

·         When can you expect to see something from the work?  The work plan will be with the Ministry of Health at the end of June 2009.  The next newsletter should contain more information about timeframes. 

2. Education ASD Action Plan

·         Leading organisation:  Ministry of Education

·         Goal: To develop a coordinated national plan for professional learning and development, including establishing a network of ‘Go To’ people who will take a leading role in providing evidence-based support and current information.

·         Links to NZ ASD Guideline Recommendations: 6.6, 6.7, 6.9-6.14, 6.16-6.25, 6.27.

·         Status:  The plan has been drafted and consultation is underway.  The draft plan stresses the need for activities to be connected and coherent and affirms that everyone has a role to play in supporting children and young people with ASD to learn, achieve and contribute to society, and outlines support for these roles.

·         When can you expect to see something from the work?  Initial scoping of the associated and detailed work plan will be completed by 30 June 2009.   

3. Early Intervention ASD Project

·         Leading organisation:  Ministry of Education

·         Goals: Exploring the use of the Social Communication, Emotional Regulation and Transactional Support (SCERTS) framework in early intervention in NZ. Specifically, during Phase Two (2009-2010), the goals are:o        Improved outcomes for more children, families and whānau;o        SCERTS effectively adapted and operating in the NZ context;o        More staff with a wider range of skills in providing effective interventions for children with ASD, their families, whānau and education teams;o        Further refining an effective model for providing professional learning and development and sustaining effective practices;

·         Links to NZ ASD Guideline Recommendations: 3.1.1 – 3.1.12, 3.2.1.10, 3.2.2.1 – 3.2.2.7, 3.2.3.1 – 3.2.3.3, 3.2.4.1 – 3.2.4.5, 3.2.5.1 – 3.2.5.3, 6.6 – 6.7, 6.9 – 6.12, 6.16 – 6.23, and 6.27.

·         Status: Phase Two (2009 – 2010) underway, involving thirteen teams across the country, 77 early intervention practitioners and at least 144 children, their families and whānau.

·         When can you expect to see something from the work?  There is a website for the project – www.inclusive.org.nz/asdev (part of the website is restricted to participants in the project). As resources are developed by the teams, they will be added to the website. 

Keynote address to the Disability Studies Conference, Disability Studies Research Centre, University of New South Wales,Sydney, June 2009

Dr Martin Sullivan, MasseyUniversity, Palmerston North  

Introduction

This week is a significant time in the disability communities of Aotearoa and Australia because it was about a year ago we lost two major disability activists, teachers and researchers.  I speak of Associate Professor Anne Bray and Associate Professor Christopher Newell and would like to take some time to remember and honour them.

I doubt many on this side of the Tasman would have heard of Anne Bray, let alone known her.  Anne’s younger brother had Down syndrome but he lived at home when children with Down syndrome were sent to institutions. Anne began her teaching career at Canterbury University in 1974 before being appointed to the position of lecturer in the Faculty of Education at the University of Otago. Disability issues always featured prominently in her teaching.  In 1984 Anne was appointed director of the Donald Beasley Institute (DBI) in Dunedin which had been established for research work in the area of intellectual disability.  The guiding principle of all Anne’s work was that of social justice and had the object of improving the lives of intellectually disabled people. Anne and the DBI were at the forefront of the movement to close the large psychopaedic hospitals: she and her team provided the empirical evidence for their closure, the how of the closure, and then the empirical evidence of the success or otherwise of those closures.  She built a strong team of researchers, supervising many through their PhD studies in conjunction with the University of Otago.  She edited the New Zealand Journal of Disability Studies (NZJDS) for many years before handing the editorship on to me when she contracted cancer.  Anne’s legacy is her fearless advocacy for disabled people, the DBI and its ongoing transformative – emancipatory research with intellectually disabled people in Aotearoa/New Zealand (ANZ).

Associate Professor Christopher Newell of the Tasmanian School of Medicine was a well known and much loved disability activist and intellectual in Aotearoa New Zealand.  So much so that he was accorded honorary Kiwi status whenever he visited.  He was in much demand as a keynote speaker and would do at least a conference a year in Aotearoa.  News of his death led to an outpouring of grief on our side of the Tasman. We held a special remembrance ceremony at which a number of us from the disability community spoke of his lasting impact and the lessons he had taught us in his gentle, persuasive way.

Christopher began his working life in a sheltered workshop and ended up as an Associate Professor lecturing medical students in ethics.  Often he would lecture his students from his hospital bed, which he would get wheeled into the lecture theatre in the Hobart Hospital.  Christopher was an academic activist to the core.  He was also an Anglican priest who chose not to take the high road but trod the backroads and byways where he befriended, counselled and supported the abandoned, destitute and lonely – many who were disabled people.

Christopher’s big thing was about “moving disability from other to us”.  He did this on a personal level among disabled people and struggled to inculcate it in the consciousness and public life of Australia.  He was instrumental in approaching me to extend the NZJDS to become an Australasian journal.  He will live on in journal we are planning: Disability Studies: Aotearoa and Australia.  He lives on in his work, and, more importantly, in the hearts of the many he touched and whose lives he transformed.   

Two mighty totara have fallen in the forest of Tane.  Haere ra Christopher.  Haere ra Anne.

In preparing for this key note, I had a look at the abstract I had written some months earlier to remind me of what I said I would say today. I thought it prudent to have a look at some of the work of my Australian colleagues so as to avoid carrying coals to Newcastle and looking rather stupid.  In one paper, Helen Meekosha, makes the point that the insights emerging from Australian disability studies seem to have little relevance to the makers and shakers in disability studies in the UK and USA who are immersed in their own projects (and, I might add, rivalry).  It then occurred to me that disability studies in Aotearoa New Zealand are probably just as irrelevant and unknown to Australian disability studies and scholars as their’s are to the North. Hence, rather than sticking religiously to my abstract, I though this might be a good time to tell you what has been going on across the ditch in disability studies, disability policy and disability generally.

Disability Studies 

The only programme in ANZ dedicated to disability studies is the one I teach.  It is a Post Graduate Diploma in Arts with an endorsement in Disability Studies.  A number of students go on to take an MPhil which gives them a masters degree by completing a disability related thesis. 

The programme began in 1993 with a paper called Disability Studies which concentrated on theory, policy and methodology.  It could be taken as an elective in either the Masters of Social Work or MSP programmes.  In 2003 we got permission to offer a PGDipArts with an endorsement in Disability Studies, so a paper concentrating on the Disability Rights Movement, rights, advocacy, ethics and contemporary issues was added.  I would like to add another paper so I could have a named Masters degree but since funding is tight in the tertiary sector the orders from on high have been to cut rather than add papers. People who take the PGDipArtsDS include disabled people, parents and, mostly, people working in the sector.  Next year I begin teaching a 3^rd year paper, Disability in Society, at undergraduate level which I hope will serve as a feeder into the diploma course.

When asked what disability studies are about I tend to say “The social & political aspects of disability”. I’ve modelled the programme more down the British line than the American, so it’s rather paradoxical that an American theorist, Tobin Siebers, more accurately captures what I try to do in the Diploma when he says:

The number one objective for disability studies … is to make disability an object of general knowledge and thereby to awaken political consciousness to the distasteful prejudice called “ableism”. (2008, 81)

I do this by exposing my students to what disabled writers and their allies have to say about disability in contemporary society.  Many find the whole ‘social oppression’ thesis quite shocking; and, indeed, it is shocking: what happens to most of us with impairments in today’s society is shocking. 

I must admit I sometimes feel a bit of a fake teaching the social oppression thesis because here I am sitting in front of class, highly educated and earning a good salary.  My position and income gives me certain freedoms and choices my students don’t have or are ever likely to have.  And I think this is why I like Siebers’ definition so much; it reminds me that no matter how privileged a position I occupy within academia, I am still subject to ableism both within and without academia.

But I digress.

Other programmes featuring disability in ANZ are mostly taught in the Colleges of Education which are involved in teacher training, specifically special needs education.  At the Massey University College of Education, a Centre for Research into Inclusive Education teaches papers firmly based on the social model as do the programmes at Auckland and Canterbury Universities.  

There are of course students dotted around the various campuses completing theses on disability related matters in disciplines such as anthropology, sociology, education, psychology and public policy.  These usually only really come to my attention when they are finished and if I get to examine them.

Numbers at Masters and PhD thesis level have increased in recent years thanks to scholarships established by the Health Research Council.  These scholarships are aimed at increasing the research capacity in the disability area – especially among post grads with disability.  A few years back the HRC asked Anne Bray, Alan Clarke and me to review their disability funding portfolio.  We found that practically all funding had been knobbled by clinicians doing ‘cause’ and ‘cure’ type research.  We introduced HRC to the social model and argued they should direct funds to researching the well-being of impaired people living in a disabling society. They agreed (and have since been true to their word) and we then said “well to do this research we need to increase capacity amongst disabled people by funding them through advanced study.”  Hence the scholarships.

What made this all possible was the policy climate of the day.  As you shall see, we had a NZ Disability Strategy in place and a government with a well developed disability consciousness.  I think it important to spend a bit of time on policy and disability policy at this point, because much of what happens within Disability Studies in Aotearoa is very much determined by what is happening in policy.  By this I mean that when teaching a research based degree, I find that students mostly look to apply disability theory in a critical analyses of contemporary disability policy.

Disability Policy Aotearoa 

To understand social policy in NZ one has to understand the founding document of ANZ, the Treaty of Waitangi.  Te Tiriti o Waitangi was signed on 6 Feb 1840 between Maori and representatives of the British Crown.  It is a short document consisting of three articles.

Article the first [Article 1]

The Chiefs … of New Zealand … cede to Her Majesty the Queen of England absolutely and without reservation all the rights and powers of Sovereignty which [they] exercise or possess…

Article the second [Article 2]

Her Majesty … guarantees to the Chiefs and Tribes … the full exclusive and undisturbed possession of their Lands and Estates Forests Fisheries and other properties which they may collectively or individually possess … but the[y] … yield to Her Majesty the exclusive right of Preemption over such lands

Article the third [Article 3]

… the Queen of England extends to the Natives of New Zealand Her royal protection and imparts to them all the Rights and Privileges of British Subjects. 

But to confuse matters, two texts were signed: one in English and one in Maori.  About 40 Chiefs signed the English version, 500 the Maori version.  I’ll return to these in a moment.

The treaty was by and large ignored by settler governments and following the land wars of the 1860s, much of Maori land was alienated via confiscation, legal and illegal land deals, swindles etc and with the loss of land the loss of language, culture and traditional kin based society followed as Maori drifted to urban centres. Here the ravages of alcohol and disease took further toll. 

By the 1960s, Maori were largely an urban, dispossessed people at the bottom of all social indicators.  Clearly the policy of assimilation was not working and one of biculturalism was suggested as the way forward for Maori.  Biculturalism is a type of cultural pluralism characterised by two partners rather than several.  This was more in keeping with the spirit of the Treaty of Waitangi which implied a partnership between Maori and the Crown. By the 1970s biculturalism had become the basis for Maori policy and through the next decade it quickly became the goal for all government departments.  By the 1990s, substantial progress had been made to at least introducing a cultural dimension and increasing the Maori workforce in the public sector (Durie, 1994). 

Parallel to, and giving impetus to movement within the state, was a renaissance in things Maori within urban settings. In the early 70s a number of young urban radicals formed Nga Tamatoa and began discussing their alienation from their Maoritanga; ie their loss of language and connection to their ancestral land, marae and their culture.  One faction within Nga Tamatoa modelled themselves on Black Power leaders in the US while a more conservative, university educated group set about supporting Maori migrants to the cities to find jobs, representing Maori before the courts, they set up kohanga reo or language nests to teach their children the language, established year long courses for training teachers in the reo and so on. So from the 70s what became known as the Maori renaissance in things Maori dominated the political & cultural consciousness of Aotearoa.  The Treaty of Waitangi, breaches by the Crown and calls to honour it were central to this renaissance (Walker, 1990; Durie, 1994).  

As I have mentioned there were English and Maori versions of the Treaty and this resulted in much debate around interpretation.  [See Durie 1994 p.85 for diagram] Maori argued that a greater degree of Maori authority was promised in the Treaty, while the Government argued that a full transfer of sovereignty had occurred.  In an attempt to reach some sort of compromise it was decided that it would be easier to follow the principles underpinning the Treaty, rather than the actual text itself.  A series of Treaty Principles subsequently emerged in a number of forums including the 1988 Royal Commission on Social Policy (RCSP), the courts and the Crown/government.  These principles were used to guide the implementation of the Treaty in various settings. The ones which concern us in Disability Studies are those which the RCSP formulated to guide the development and implementation of social policy generally.  These are the principles of partnership, participation and protection.  

Partnership

·        sometimes used to describe a working relationship between Maori Iwi (tribes) or hapu (sub-tribe) and government agencies

·        implies an association of equals but it more often refers to a reassignment of government authority to a tribal group within constrained guidelines – I fear that this is about as good as it gets in some of those partnerships between disabled people and the state or professional bodies 

·        symbolism – Treaty partners working together to achieve mutually acceptable goals

Participation

·        refers to Maori involvement in a particular activity or sector eg District health boards (hospitals and their regions)

Protection

·        this relates to Article three in the Treaty which guarantees Maori the same rights and privileges as other New Zealanders

·        implies “active protection” which requires Government to intervene positively rather than just let Maori take their chances alongside other groups ie provide culturally appropriate services

Many within the disability rights movement in NZ see themselves as occupying a similar position to Maori in mainstream society.

·        Maori were colonised by the British crown; disabled people have been colonised by medical and associated professionals;

·        Maori were made strangers in their own land; many people with disability were locked up in institutions and made strangers to their communities;

·        Maori were forced to participate in a biased, mono-cultural system; disabled people were excluded from participating in their communities on their own terms;

·        Maori are discriminated against by racism; disabled people by disableism/ableism;

·        Maori have high rates of failure in an institutionally racist education system; people with disability are routinely excluded from an ableist, mainstream education system;

·        Maori are subject to higher rates of unemployment and lower rates of income than non Maori; disabled people have high rates of unemployment and many are condemned to survive on subsistence level benefits;

·        Just as Maori have had tino rangatiratanga denied and made subject to British law, people with disability have had their humanity denied and made subject to pity, medicalisation and welfarism;

·        Just as Maori have been granted a limited form of tino rangatiratanga over tribal resources, many disabled people have been granted limited control over their lives within the confines of services, individual life plans, group homes and so on.

Given these parallels, it is not surprising that many disabled people in Aotearoa came to the conclusion that they needed their own treaty; a treaty to establish a genuine partnership with government; a treaty to guarantee our equal participation in society; a treaty which affirmed the active protection of our citizenship rights by the state.  With the election of a Labour led coalition government in 1999, this seemed a distinct possibility because in opposition they had promised us a Minister and Office for Disability Issues and the development of a NZ Disability Strategy. 

After extensive consultation with disabled people, the NZDS was adopted in 2001.  It is underpinned by the social model and aims to create a non-disabling society (P.5) by progressively removing the barriers to participation which confront impaired people.  This is captured nicely in the following:  

Underpinning the New Zealand Disability Strategy is a vision of a fully inclusive society.

‘A society that highly values our lives and continually enhances our full participation.’ (NZDS 2001, p.1)

Fifteen objectives are set out for the Government to achieve on its way towards a non-disabling society.  Ministries, departments and state agencies are required to report on the progress they have made in implementing the NZDS in their annual reports to parliament.  In the 2004/05 Progress Report, it was noted that a growing number of crown entities and territorial authorities were willingly taking part in Strategy implementation even though they were not required to. This is encouraging.  As is the broad, cross party support for the Strategy.  

Given this, many disabled people in Aotearoa New Zealand now see the NZDS as their treaty with the Government to build towards a society in which they can participate on their own terms and as much as they want. It also implies a partnership between disabled people and the government as well as the active protection of disabled people by the government.  Such partnership was highly visible during negotiations around the UN Convention on the Rights of Persons with Disabilities; from the beginning the NZ delegation was the only one to consist of State officials and disabled people including one with intellectual disability.

The NZDS has its limitations.  For example, it only applies to the state and those contracted by the state to provide services. And while its philosophy is right, the objectives could do with refinement, and implementation is quite lumpy.  But what it does provide is a multitude of entries for analysis and critique within disability studies.   And then, two questions are critical: is it working for Maori? Is it working for non Maori?

And therein lies the rub.  When I, a pakeha, am talking about disability, am I talking about the same thing as when Maori are talking about disability?  Up to twenty-five years ago it would have been acceptable for me to go out, do the research and become the ‘expert’ on Maori and disability.  This is unacceptable today because of Treaty consciousness, tino rangatiratanga and the reality that only Maori can speak for Maori with any authenticity.  And this presents a problem insofar as there are very few Maori disability researchers in the field.  

Maori and disability

One source, Maori Concepts of Disability, by Jo Kingi and Anne Bray reveals the potential for our talking past each other.  When Kingi asked Maori what the word disability or the concept disability meant to them, they generally saw it in terms of the effects of colonisation: 

It’s disability to have your land taken off you, it’s a disability to have your family dissolved and shifted to an urban environment where you’ve never been before.  It’s a disability to be told that you can no longer grow your own food so you have to get a job in a system that has been set up by white people for white people….  (Kingi and Bray 2000, p.8) Maoris are being brainwashed into doing things the pakeha way – that’s disability – it’s got to be done the Pakeha way – brainwashed. (ibid. p.8) We are disabled in the Pakeha world – in our world we’re not. (ibid., p.21) Poverty was seen as more disabling than any physical, psychiatric or sensory impairment. Drugs, alcohol and tobacco use by Maori were issues that were also perceived as disabilities by Maori (ibid., p. 12).   Policies of assimilation, especially the legislation which made the teaching of te reo Maori (language) in primary schools illegal and which remained in force until 1967, were seen as especially disabling.  One person spoke of his loss of language as his disability. Most spoke of the process of colonisation and its particular effects on identity and self worth as a disability:  We have a tendency to think of people in wheelchairs but I think from my understanding, and no doubt others, that disabilities is that people have lost their knowledge of whakapapa [genealogy] and how they are related to whanau, hapu and iwi [family, sub-tribe and tribe].  (Kingi and Bray 2000, p. 18) When asked if they thought there was a difference between Maori and pakeha concepts of disability, many commented on just how different the worldviews actually are:  Well I think the Maori health view is far more holistic than the pakeha health view – it takes into account the whole being and I believe the pakeha health view separates it – fixes one thing (ibid., p. 22)  Well I know we are different because we accept people as they are. (ibid.) There was no such things as manic-depressives or schizophrenic in Maoridom… . (ibid.)  It is important to note that Kingi stresses there is no such thing as ‘the’ Maori view on disability and what she presents is ‘a’ Maori view of disability.

This tends to be born out by an earlier report He Anga Whakamana. A Framework for the Delivery of Disability Support Services to Maori, (1995) which takes account of the effects of impairment as well as those of colonisation and assimilation.   In one of the earlier quotes, a participant mentions the loss of whakapapa and the knowledge of relationships between whanau, hapu and iwi as a disability.  This person is talking about whanaungatanga or relationships; the sense of family connection built through shared experience and working together which gives people a sense of belonging.  Whanau translates into extended family or family group.  So Maori do not see themselves as individuals so much as part of an extended group, be it whanu, hapu or iwi.  Identity and place in the world is closely tied to these groups.

This has implications for disability studies and disability support services, because while it may be appropriate to treat disabled pakeha as individuals, disabled Maori must always be seen as part of a whanau.  This already happens to a certain extent when Maori are negotiating over services etc. They are encouraged to bring members of their wider whanau to support.   When my pakeha friend is having another confrontation over DSS for her autistic daughter, I usually attend these meetings as whanau support even though there is no blood relationship between us.  This is entirely consistent with contemporary meaning of Whanau.  I guess you could call this biculturalism in action.  In summary, it is evident that disabled Maori see themselves as Maori first and as disabled people second.  This has huge implications for disability studies and the disability movement in Aotearoa in terms of developing a true partnership with Maori if disability studies and the movement are to have any relevance.   

It also means that disability studies in Aotearoa has to become bicultural and within that bicultural framework provide active protection for Maori academics and Maori students.  Active protection suggests to me a parallel development in which Maori have rangatiratanga and are resourced to do disability studies according to tikanga and in a culturally appropriate way.    Just as the Treaty of Waitangi implies one nation, two peoples, a Treaty centred disability studies programme will be bicultural and involve exchanges and opportunities for learning between te Ao Maori and Pakeha worldviews on disability I think it would be very useful for disability studies in both Aotearoa and Australia to do some research into whether any indigenous disability movements have developed, and if so, what forms do they take, their culture, objectives and so forth. I think we have a lot to learn from indigenous people when it comes to disability. 

On that note I would like to finish.  I have attempted to provide some insight into disability studies in Aotearoa NZ by unpacking the cultural context which influences both disability policy and disability studies.  I have done this at the risk of conveying a view of disability studies as been narrowly policy focused and obsessed.  Nothing is further from the truth as all the debates about the utility of the social model, of structural as opposed to poststructual approaches, the problem of impairment and how to bring the body back in without slipping into medicalisation etc, etc are alive and well on our side of the ditch.  These are worthy debates but, perhaps it is time for us in the global south to be shifting our attention to what is distinctive about disability in our part of the world, what we can learn from it and how to ameliorate it.  

Durie, M.  (1994) Whaiora. Maori Health Development. Auckland: OxfordUniversity Press.

Kingi, J. and Bray, A. (2000) Maori Concepts of Disability. Dunedin, N.Z.: Donald Beasley Institute Inc.

Ratima, M., Durie, M., Allan, G., Morrison, P., Gillies, A. and Waldon, J. (1995)  He Anga Whakamana. A framework for the delivery of disability support services for Maori. Wellington, N.Z.: Core Services Committee, Ministry of Health.  

Siebers, T (2008) Disability Theory. Ann Arbor: The University of Michigan  Press.

Walker, R. (1990) Ka Whawhai Tonu Matou. Struggle Without End. Auckland: Penguin Books.

 Hope this blog finds everyone in ‘cyber space’ well.

I was very interested in the Prime Minister’s ’summit on employment’ last Friday. Those who know me won’t be very surprised by that (but they might be surprised to read that I didn’t watch the closing comments live- I was exploring another passion of mine- cricket- go the Black Caps!) But I was interested by some of the comments that I heard, and I also wondered ‘whose voices weren’t being heard at the summit.’

I should say that I’m not against the idea of a summit to discuss the economy- it doesn’t take Adam Smith to tell you that the World is in some economic trouble. And being an ‘ideas’ person myself, I think its crucial that we do some factual thinking and theorising on these matters.

That’s why I was more than mildly surprised to hear the Prime Minister urging delegates at the start of the day to ‘leave their ideologies at the door.’ Lets think about that for a minute. When I did first year University politics, I did a course on political ideologies- we had an ‘ideology a week!’ The main thing it taught me was that EVERYONE has a way of seeing the World- its a series of ideas which offer an account of the present state of the World, gives ideas for how to change it and then outlines how that change will brought about. It therefore would worry me greatly if delegates hadn’t gone with ways in which they wanted to change (or preserve) the World to maintain employment.

I also wonder, following on from that, what ‘ways of seeing the World’ weren’t present at the summit.

Consider these three facts:

-60% of disabled people earn less than $15,000

-The employment rate of people with Asperger Syndrome is 3% in the Western World.

-In times of economic downturn, people with impairments (especially intellectual impairments) are more likely to be the first to ‘be let go.’

 I wonder who put those three facts to the Jobs Summit? In fact, I know who did- Wendi Wicks, Policy Researcher for the Disabled Persons Assembly. But, as I’m sure Wendi would acknowledge, its a hard job putting the views of 660,000 New Zealanders (and their families or whanau.) This number includes the 40,000 people with autism.

However, the Government has urged us to be innovative and come up with ideas. So here are my three top ones:

1. The 9 Day working fortnight is a good idea- I should know I do it now!How about the Government and industry, as well as paying for skills and training development for workers- extend that out. So on the 10th day Government could reward firms which do mentoring of groups of people who most need job skills- such as people with ASD. People with ASD- especially Asperger’s Syndrome- have highly developed fields of interest. The strategic use of these ‘fields of interest’ would be of great use to the economy. Support will be needed by firms however to make sure that both they and those of us with ASD get maximum benefit from the experience.

 2. Recognise that work is part of the ‘ordinary life package.’ I’m conscious as I’m writing this where I am. I’m sitting on my computer at my new flat and once I’ve finished this I’m going to cook myself some dinner. These may not sound like big things- but for the majority of disabled people these choices struggle to happen. Why? Because in order to pay the rent on my own flat, buy food and drink and write this blog I need two key components- education and employment- both things which disabled people can be ’shut out from.’ So please remember those making policy decisions from this summit- the ordinary life package!!

 3. Articulate some VALUES under which decisions will be made at this time. This is my ‘biggie’ and precisely why I think ‘ideology’ does have a part to play here. Telling us what ‘values’ the Government expects people to use in this crisis would reassure us (well me anyhow) that the Government doesn’t support a ‘free for all’  in the scramble for everyone to secure their livelihoods. Values provide us with a series of boundaries and beliefs which we believe are fundamental. Here are three I’d like to see articulated:

 1. Diversity- making sure we ‘include all people’ in our solutions to this crisis.

2. Social Justice.

3. Interdependence- an acknowledgement that we cannot survive without each other’s talents and labour.

 People may disagree with my assessment here. But I hope it at least gets people thinking- the thing I think we most need to do in this situation.

 PS: Russell- am enjoying watching ‘Media 7′ now I have freeview!

Cheers, Matt.

29 January 2009 

Allan Peachey MP

Member of Parliament for Tamaki

Chair

Education and Science Select Committee

Parliament Buildings

Dear Mr Peachey

EDUCATION (NATIONAL STANDARDS) AMENDMENT ACT 2008 

I am writing on behalf of the board of Autism New Zealand Inc to express concerns about the Education (National Standards) Amendment Act 2008 which was passed under urgency in December. We had hoped to have the opportunity to make a submission to the select committee but were denied this opportunity because the Bill was passed under urgency through all its stages in two days.

This Act has serious implications for students with autism spectrum conditions and their families. But we do not think this has been taken into consideration by Parliament in passing this Act. In this letter we set out our concerns and ask some questions about the legislation.

There are two particular aspects that concern us for their potential negative effects on our children and families.

Part 1:  Increased fines for parents who do not ensure their children attend school, and extending the powers of prosecution beyond the local school board. 

Many students with autism have very negative school experiences. This could be due to bullying, the school not understanding their learning needs, sensory overload caused by the school environment, or a combination of these. Many students become reluctant to attend school to the extent of becoming school refusers or even school phobic. Others have been subject to ‘kiwi suspensions’ whereby they and their families are made to feel so unwelcome at the school that they find it easier to stop attending, although official procedures might not have been followed.

Whatever the cause, many students of legal school attendance age do not attend school. Many parents sympathise with their children as they see the stress the formal school environment causes.  But these parents are now liable for a $3000 fine on the second offence of not enforcing their child’s attendance. 

Will there be counter measures put into place to make school a more welcoming and appropriate environment for students with autism, and their families?

Part 2: Literacy and numeracy standards 

We have three questions about this section:

1. If all children are to be tested against national standards in New Zealand what provisions will there be for those with different learning styles, and for those whose strengths are not in literacy and numeracy?

2. We would like to know what extra support will be provided for children with special educational needs, including autism, in mainstream settings? All children with special educational needs (not just those with autism) are likely to need extra support to sit these tests and schools may be unprepared to enrol them as they will potentially drag their league tables down. Most children with autism and other special needs in

3. How will the testing regime impact on those in special schools, satellite classes and units? Will they also have the same tests and reporting requirements?

We are also concerned that this legislation is signalling that New Zealand will follow the No Child Left Behind policy of the Bush administration of the United States.

Temple Grandin, PhD, an adult with autism, has criticised the No Child Left Behind policy of standardised testing of literacy and numeracy for its negative effects on the teaching and learning of children with autism. Most autistic children have special learning needs, and many have strengths in areas beyond literacy and numeracy, while they may struggle with the narrow range of abilities being tested. But because the tests are publicly notified and the teachers must use them, there is little time for the personalised learning these children require. Some children in the

NCLB has recently been evaluated by the independent No Child Left Behind Commission. (Beyond NCLP: fulfilling the promise for our nation’s children, 2007 www.nclbcommission.org).

Their report provides valuable information for those of us interested in education of children with autism and special needs. NCLB came into force in 2002 with the admirable intentions of closing achievement gaps and having high expectations for all students. The Commission’s report approved the aims of the legislation but found it is not achieving its goals.

Why? Because, after intense research, they have concluded that what makes a difference are effective teachers (such as those who can teach and engage with a diversity of students), principals who provide strong community leadership, and schools that foster learning communities. They also found that those children with the greatest educational needs tended to get the least effective or most inexperienced teachers.  We in New Zealand already know all this and it has provided the basis of our teaching and learning policies for years. NCLB has now been shown to have done little to lower the numbers of high school drop outs and has even lowered achievement in some groups. One recent report details the unexpected consequences of threats of non-achievement on students, schools and parents, with manipulation of scores, inaccurate classification of students, and reduced flexibility in the curriculum. (Fetler, L, ‘Unexpected testing practices affecting English language learners and students with disabilities under No Child Left Behind’, 2008,  http://pareonline.net/getvn.asp?v=13&n=6) 

This is why we are concerned if the intention of the Education Amendment Act is to adopt an American system that has been shown to be deeply flawed.

I have attached two short papers from the Commission on No Child Left Behind (The Facts: ensuring students with disabilities achieve academic success and Teacher and Principal Recommendations: effective teachers for all students, effective principals for all communities www.nclbcommission.org) 

New Zealand Autism Spectrum Disorder Guideline

We would like to remind members of parliament and the committee of the extensive work done on the development of The New Zealand Autism Spectrum Disorder Guideline. It assessed the evidence about what works for children with ASD in educational settings and has found that the most suitable education setting ‘will be one:

• That provides adequate structure and gives the child or young person opportunities for contact with typically developing peers
• Where staff are well trained and have a positive attitude, expertise, understanding and a willingness to work in a team with the family
• That has the ability to be flexible in meting the child’s needs over time (Recommendation 3.4.3)’.  (NZ ASD Guideline, 2008, page 129).

It recommended that:

‘tests and other cognitive assessments should be administered  by a psychologist with experience and training in ASD (Recommendation 3.2.4.1) The setting needs to be chosen with particular care and extreme care is required when interpreting test scores, particularly with young children.’ (Pg 116)

We would be very happy to come and talk to you and/or your committee about the educational needs of students with autism spectrum conditions.

Yours sincerely

Hilary Stace

Board Member

Autism New Zealand Inc

This week I received the following letter back from Mr Peachey. 

‘10 February 2009

Dear Hilary

Thank you for your recent letter relating to the Education National Standards Amendment Act 2008.

 I have not yet had time to study your letter in detail but will do that in the next few days and bring to the attention of the Minister for Education concerns that I have in relation to how our autistic children are treated in schools.

I have raised with the Honourable Chris Carter Deputy Chairperson of the Education Select Committee the thought that the committee might do some work on the schooling for autistic children.

I can not guarantee that this will happen but it is something I am quite keen to do.

 Kind regards

Allan Peachey

Member of Parliament

Tamaki’

Hello, 

This past Friday, we met with representatives from the Office of the President-Elect on Autism Policy. The meeting was attended by representatives from the Autistic Self-Advocacy Network, Easter Seals, TASH, the Marino Foundation, Autism Speaks and the Autism Society of America.

At the request of the Office of the President-elect, we presented to the new administration our top three policy priorities for the coming year:

 1) Supporting and Empowering autistic adults,

2) Ending School Abuse and Ensuring a Free and Appropriate Public Education for Every Student, and

3) Balancing the Research Agenda in Support of Quality of Life.

You can read our recommendations to the new Administration on our website and we encourage you to post them on your blogs, listservs and elsewhere.  Although these are our top three priorities, they do not represent our only action items and we are pleased to report that the incoming administration expressed a strong interest in remaining in continuous contact on these and other issues. It is absolutely essential that we ensure that autistic self-advocates have a voice at the policy table and we will continue to keep you up to date as we advocate for the autistic community. 
Nothing About Us, Without Us!

Regards, 
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC  20036
http://www.autisticadvocacy.org
732.763.5530__._,_.___

Dear President-elect Obama:

On behalf of the Autistic Self-Advocacy Network, we would like to provide your office with the attached policy recommendations addressing our top three public policy priorities for the new administration, as per the requestmade by your transition team. The Autistic Self-Advocacy Network is an international civil rights advocacyorganization of autistic people across the lifespan advocating for our community in public policy, service-delivery,research and media representation. Our organization is unique amongst autism advocacy groups in that we are run entirely by and for autistic people, the all too often unheard stakeholder in autism policy.

We want to applaud your efforts to ensure that this will be a fully inclusive and transparent transition process andhope that the same spirit will govern the upcoming administration.  As 2009 begins, autistic people across the country and the world continue to face many obstacles preventing the full realization of quality of life,communication, rights and opportunity. The public conversation about autism continues to be one that is held largely without autistic people, who should be the central stakeholder. It is necessary to implement the central tenet of the disability rights movement, “Nothing About Us, Without Us,” in our community.

Furthermore, numerous service-delivery and rights protection infrastructures designed to protect individuals with disabilities are not yet proficient at meeting the needs of autistic people across the lifespan. This must change. At the same time, it is also important that we not disconnect autism issues from the values and principles of the cross-disability rights movement. With that in mind, we have been active participants in the consumer-led Disability Leaders Caucus alongside other disability rights organizations such as the American Association of People with Disabilities, theNational Coalition for Disability Rights, the Special Olympics and other groups. We wholeheartedly endorse and are proud to have helped to develop the recommendations of that coalition alongside our own more specific recommendations focusing on the top three priorities of the autistic community.

Our top three priority areas are as follows:

1. Support and Empower Autistic Adults

2. End School Abuse and Ensure a Free and Appropriate Public Education for All Students on theAutism Spectrum

3. Balance the Research Agenda to Support Quality of Life

We have included a one page description of each priority area as well as recommendations on specific means of policy implementation. Please feel free to write to us if you have any follow up questions and we look forward tocontinuing to be a part of the policy process under the incoming Obama Administration.

Regards,Ari Ne’eman 

President

The Autistic Self Advocacy Network

Support and Empower Autistic Adults:

Current CDC statistics estimate the ratio of autism spectrum diagnoses amongst children at 1 in every 150. Systems designed to meet the needs of adults with disabilities are unprepared to deal with the large numbers of identified students on the autism spectrum preparing to transition into secondary and post-secondary environments. We must work to help high schools and adult services infrastructures meet the needs of autistic adults. Furthermore, a growing number of studies analyzing factors such as diagnostic trends, IDEA statistics and other factors suggest that rather than an “autism epidemic” what we are seeing is increasingly accurate diagnosis of previously un- or mis-identified individuals due to better diagnostic criteria and awareness. As such, there exists a large population of un-diagnosed or only recently diagnosed autistic adults whose needs must be met.We recommend the following:

▪ Ensure that autism health insurance reform addresses the needs of all autistic people – including coverage of methodologies such as speech and occupational therapy and Augmentative and Alternative Communication(AAC), as well as adult needs such as mental health services and vocational counseling programs.

â–ª Increase capacity of existing disability service-delivery and rights protection infrastructures to meet the needs of adults on the autism spectrum by:

-Ensuring that future re-authorizations of the DD Bill of Rights Act, the Rehab Act, IDEA and other major disability service-delivery and rights protection laws incorporate language requiring covered infrastructures to increase capacity and expertise needed to serve individuals on the autism spectrum across the lifespan.

-Work with Congress to Pass and Implement an Emerging Needs Protection & Advocacy Program as well as other initiatives discussed in Sen. Clinton’s Expanding Promise for Individuals with Autism Act. (S.937)

-Fund pilot programs to develop models for emulation on issues like employment supports, housing, socialsupports, post-secondary transition, community integration and other issues of importance to autistic adults.

-Appoint individuals knowledgeable in autism spectrum issues to lead OSERS, OSEP, ODEP, the DOJ Disability Rights Section and the EEOC.

â–ª Aggressively enforce disability discrimination laws in regards to autistic people across the lifespan.

-Direct the EEOC and DOJ to develop technical assistance materials outlining the rights of and frequent accommodations for autistic adults in contexts such as employment and interaction with police.

-Fund an extensive outreach program to inform autistic adults and families about relevant rights.

-Convene an inter-agency advisory group on the civil rights of autistic people across the lifespan, includingrepresentatives from self-advocacy and family organizations.

â–ª Work to address the lack of physicians knowledgeable enough to accurately diagnose adults on the autism spectrum by providing funding to improve medical education about the autism spectrum across the lifespan.

▪ Provide states with incentives to address the needs of autistic adults of all kinds across the lifespan. Models to  explore include the Pennsylvania Bureau of Autism Services and the Florida CARD system.

â–ªEnsure that all task forces, commissions, committees and other entities tasked with making autism policy include substantial representation from autistic self-advocates.

End School Abuse and Ensure a Free and Appropriate Public Education for All Students on the AutismSpectrum

Our nation is facing a critical civil and human rights issue with respect to the education of students on the autism spectrum. The frequent use of restraints, aversives and seclusion place students with disabilities, including those onthe autism spectrum, in the position of being abused in the name of treatment. Students with disabilities are at risk and students on the autism spectrum, who often have significant challenges in communication and social interaction,are at particular risk of many kinds of abuse. States across the country continue to allow methods that include pronerestraint, electric shock, slapping, seclusion and other unethical and dangerous methods. This must end. Despite a requirement that all students with disabilities be educated in the “least restrictive environment”, students on the autism spectrum continue to face rates of school segregation over three times higher than those faced by otherstudents with disabilities. For too many students, the promise of inclusion remains far away. Not only has enforcement of relevant special education law civil rights provisions been lax to non-existent in many jurisdictions, but recent judicial decisions have weakened the ability of parents to fight for the rights of their children.We recommend the following:

â–ª All federal laws and regulations which protect persons – of all ages – with disabilities from abuse in institutionaland treatment settings must also be applied to schools – all schools: public, private, day, residential.

-Issue an Executive Order implementing circuit court decisions stating that the Developmental Disabilities Bill of Rights Act applies to schools and should be enforced through all available measures. Clarify that aversives, seclusion and non-emergency restraint are in violation of the DD Bill of Rights Act.

-Place responsibility and budget funds for enforcement of laws protecting students with disabilities from abuse in HHS rather than USDOE, as HHS is better equipped to ensure proper enforcement.

-Fully fund the Protection & Advocacy (P&A) system. Have USDOE instruct state DOEs not to retaliate infunding against P&A agencies for seeking to enforce the law against schools that violate it.

▪ Transfer responsibility and budget for enforcement of IDEA complaints from USDOE Office of Civil Rights to the USDOJ  Civil Rights Divison. Failing this, transfer responsibility for complaints including acts of retaliation and intimidation against parents by school districts to USDOJ to address the more egregious illegal activity.

â–ª Ensure that IDEA is fully funded and that implementation of said full funding comes along with program andfiscal audits of IDEA funds to ensure effectiveness, quality and freedom from abuse in implementation. Precedent for program and fiscal audits of federal education funds exists from similar auditing in NCLB.

â–ª Create a National Technical

assistance to school districts on effective and inclusive educational practices for students on the autism spectrum and to develop teacher training programs to help prepare teachers for all subjects and grades on the needs ofstudents on the autism spectrum.▪ Restore IDEA’s due process rights, allow reimbursement to prevailing families for expert fees, and place the burden of proof in IDEA challenges on school districts.

▪ Instruct the Office of Special Education Programs to issue a “Dear Colleague:” letter clarifying that students should be eligible for an Individualized Educational Plan on the basis of social as well as academic challenges.

â–ª Instruct USDOE to embark upon a nation-wide bullying prevention program through the use of technical assistance to schools and the funding of studies on effective means to reduce bullying, harassment and violence.

Balance the Autism Research Agenda to Support Quality of Life

The autism research agenda has been near-exclusively focused on causation and cure, two priorities out of step with the needs and desires of the autistic community. In the year 2008, only approximately 1% of the NIMH autismresearch budget was allocated towards services-research. In the private foundation sector, the situation is similar,with autism services and education research vastly underfunded in favor of causation and cure research with little impact on quality of life. The priorities reflected in the current autism research agenda send a concerning message.Research that focuses on discovering and eliminating autism both enters the dangerous and unethical realm of eugenics and avoids addressing the social barriers that autistic people face that prevent quality of life and full participation and inclusion in society at large. Balancing the autism research agenda to focus on quality of life will pay dividends by providing evidence on the most effective methods of delivering services and providing for aneffective education across the lifespan. Such a research agenda would compliment other aspects of federal disability policy, such as de-institutionalization mandated under Olmstead v. L.C., the IDEA and NCLB requirements for evidence- and research-based methodologies, the IDEA “Least Restrictive Environment” right and increasednumbers of individuals with disabilities, including the autism spectrum, in the workforce.

We recommend the following:

â–ª Require that no less than half of the federal autism research budget across all departments and agencies,including NIH, CDC, HRSA, HHS, DOL and others, be allocated towards services-research.

â–ª Pursue a vigorous quality of life autism research agenda focused on issues such as improved service-deliverymethodologies, social barriers to full participation and quality of life, effective systems change models, means ofeffectively and respectfully addressing social, behavioral, emotional and other challenges, empoweringcommunication and other priorities.

â–ª Mandate that the Inter-Agency Autism Coordinating Committee (IACC) include representation from autistic self-advocacy organizations, such as the Autistic Self-Advocacy Network, and that there exist parity between the number of parent, provider and self-advocate representatives in the public membership to the IACC.

â–ª Fund research into Augmentative and Alternative Communication (AAC) options for autistic people across the lifespan, including Assistive Technology, so as to empower all autistic people to meaningfully communicate.

â–ª Establish a moratorium on federally funded autism-related genetics research until ethical concerns surrounding a possible pre-natal test and eugenic abortion are addressed to the satisfaction of the autistic community.

â–ª Allocate no less than one third of the federal autism research agenda towards the needs of adults on the autism spectrum, addressing the near total lack of research funding towards the needs of this population to date.

▪Fund Community-Based Participatory Research (CBPR) models including autistic self-advocates as full partners at every stage of the research process, from topic selection to study design and implementation. Look to existing projects as models, such as the Academic Autistic Spectrum Partnership in Research and Education( AASPIRE – http://www.aaspireproject.org).

â–ª Provide for Student Loan Forgiveness for services-related and quality of life/participation-based researchersthat is comparable to the loan forgiveness offered for researchers who work on basic science research.

▪ Look to research funded by the National Institute of Disability and Rehabilitation Research (NIDRR) as a model for autism research priorities. 

Two new tenders have also just been released as part of the implementation process. They are for family and whanau outreach services and communication and behaviour support – both in the Auckland region. For people interested in more detail they are on the government’s GETS website and through the www.nzgg.org.nz website. So things are moving.

Autism Spectrum Disorder Dec 2008

Implementation of the ASD Guideline has required significant commitment from many people across the sector. This newsletter brings together information from some of the key groups who have been involved, and their updates or links to updates are included in this newsletter.

These groups include:             1) Ministry of Health             2) Ministry of Education             3) New Zealand Guidelines Group and the Implementation Advisory Group             4) Altogether Autism             5) Autism New

   • In line with the directives approved by Cabinet in 2007 the Ministries of Health and Education have been working with the New Zealand Guidelines Group (NZGG) to complete the implementation plan within the broad priorities set by the Implementation Advisory Group.         

    • We are pleased to announce that the Ministry of Health has been given approval to allocate funding for improving services in line with the recommendations of the New Zealand Autism Spectrum Disorder Guideline.  

Prioritisation and Allocation Process The New Zealand Guidelines Group is contracted to support the implementation process. The New Zealand Guidelines Group established an implementation advisory group, made up from people who have experience of living with autism and/or supporting people living with autism. This includes family/whanau, professional carers, people working in support organisations clinicians and educators. NZGG have worked closely with the Implementation Advisory Group to determine the priorities for the allocation of funding. These priorities were:             1) Assessment and diagnosis             2) Support for families             3) Interventions (including early intervention and behaviour support to strengthen families, and transitions)             4) Respite  

Improving co-ordination and developing the workforce flows through all of the above priorities. A brief analysis of the services provided and work activity currently underway in these areas was completed, which focused on support for individuals, families and carers. The result of this work then informed two further prioritisation discussions:       i. with the IAG on 14 August 2008 http://www.nzgg.org.nz/download/files/ASDTechnicalInformationService-1.pdf       ii. with the Ministry of Health on 18 August 2008.  

Autism

Introduction

The New Zealand Autism Spectrum Disorder Guideline is a whole of spectrum, whole of life, whole of government approach to autism spectrum conditions  (www.moh.govt.nz/autismspectrumdisorder). This world first was published earlier this year after almost a decade of work. The process of implementation has now begun and, notably, the chair of the Implementation Advisory Group, is a young man who himself has Aspergers Syndrome, a type of autism.

I will start by setting the scene – how New Zealand came to the point of having this guideline, the input of lived experience into the process, and how we can harness the various expertises around autism. In New Zealand disability supports are mainly funded through the Ministries of Health and Education (although about 11 government agencies actually have some responsibility). This talk will look at how New Zealand came to have a Guideline, challenges involved in bringing the lived experience of autism into the Guideline process, and valuing the expertises many people can bring to the work.

My personal experience of autism is as a parent of a 23 year old son. What I’ve learnt is thanks to him, and I am grateful that he lets me talk about it. Just as everyone with autism is different so every experience of autism is different. I’m a board member of Autism NZ, and part of the collaboration working to implement the Guideline. I am currently doing academic research on autism and the policy process at Victoria University in Wellington. I’m also a consumer advocate on various government groups.

Historical strands

The ASD Guideline didn’t just happen. We are at a point of time in history when several strands have come together. Understanding of autism is rapidly developing and more and more people are being diagnosed. I believe there have always been people with autism but we haven’t had the language or diagnostic tools to describe it until quite recently.

Autism described In 1943 in the United States, Leo Kanner published a paper about the children he had observed children who had an ‘aloneness’ for which he used the word ‘autism’. Meanwhile in Vienna, Hans Asperger was working with a group of similar children. He described a more strengths based condition than Kanner – possibly because disabled children were being sent to concentration camps at the time. It took decades for his work to be translated into English and then till 1994 for Asperger’s syndrome to become an official diagnosis.

I have a friend whose son was one of the first Wellingtonians diagnosed with Aspergers less than 20 years ago, and I remember her excitement about it after the puzzling first years of his childhood. In those days autism itself was a rare condition thought to affect only about 3 in 10,000, and this new condition of Aspergers even rarer. Now some think prevalence of autism spectrum conditions (ASC) is as high as one in one hundred. So our understanding of autism is constantly evolving and who knows where we will be in 20 years time?

But this is only one strand.

Parent activism

Many people with autism like Temple Grandin pay tribute to their mothers for resisting attempts to put them in institutions. In spite of a tendency by Kanner and others to blame maternal ‘coldness’ for their children’s condition, all the parents I know are red hot advocates for their autistic children, and New Zealand has a tradition of parent activism.

By the late 1960s some New Zealand parents were getting a rare diagnosis of autism for their children. They brought an international expert, Dr Mildred

 Disability rights

The growth of the disability rights movement since the 1960s has brought huge changes. This current generation is the first with expectations of rights to education, employment and independence. Disabled lobbyists have been busy in New Zealand too. Achievements included the right of every child to attend their local school in the 1989 Education Act, and the inclusion of disability in the 1993 Human Rights Act, the first Minister for Disability Issues in 2000 and the 2001 New Zealand Disability Strategy. And now of course we have the UN Convention on the Rights of Persons with Disabilities. New Zealanders had a significant input into the drafting and passage of this convention. 

Autism rights

There is now also an international autism rights movement, which has coincided with the rise of global internet use. One very active US web based group – the autistic self advocacy network – is run by a 20 year old, Ari Nee’man (AutisticSelfAdvocacyNetwork@yahoogroups.com). It circulates political news, advocates for recognition of autism as its own minority culture, and challenges the parental and medical desire to ‘cure’ autism.

Deinstitutionalisation

Largely because of disability activism, this is the first generation of autistic people which has not been institutionalised, in New Zealand and I imagine here in Australia too. As recently as the 1970s parents were urged to put their autistic children into institutions and forget about them. Historically, disabled people have been seen as deficient, scary, degenerate and not inherently equal to so-called normal people. For decades they were locked up and drugged. So the closure of our last institution in 2006 was a great landmark (which is not to say there aren’t new challenges).

1997 killing of autistic girl

Another strand started in 1997 in NZ when a mother killed her autistic teenage daughter. This led to media and policy interest, two major reports, the first consultation with parents and a decade of work leading to the NZ ASD Guideline. NZ is not alone in having parents kill their autistic children as there have been similar tragic events in many other countries. But New Zealand’s small size and connectedness meant that a collaborative response was possible. And it was championed by some dedicated public servants who realised that innovative approaches were required.

Lived experience

The ASD guideline has tried to incorporate expertise of those with lived experience. Lived experience is a term I use to describe that understanding that is gained from having a particular life experience and knowing what it is like 24 hours a day, 7 days a week. My impression from discussions with many people who have autism and accounts in blogs and autobiographies, is that there are shared lived experiences, but within that is a diversity of lived experience. For example, they may share sensory sensitivity, and difficulties in understanding neurotypical people – us – but there will also be great variations.  

Similarly, there are shared lived experiences that parents of autistic children have. But there is diversity – even contradiction – within our lived experience.

But in the past these lived experiences – of people on the spectrum and parents – haven’t been valued in the policy process.

Who are the Experts?

So the key question here is: who are the experts when you look at an issue like autism?

People with autism

My view is those who live with it every day – people with autism – are the obvious experts. They are also the experts of the diversity of their lived experience of autism. People like Temple Grandin, Wendy Lawson and New Zealand’s own Jen Birch have written about their lives as autistic people, which are fascinating for their common themes as much as their diversity. Jen Birch has played a major role in our guideline development.

You might say – but these are the articulate ones. Unfortunately, the predominant view of autism is of something deficient, or broken or not fitting – something wrong. This is increasingly challenged by members of the autism community such as non-verbal autistic woman Amanda Baggs on her Ballastexistenz website (http://ballastexistenz.autistic.org). She challenges our assumptions of what is normal. And a recent article by another autistic woman posted on the autistic self-advocacy site, looks forward to a time when there is no treatment for autism as it will be seen as a minority culture in its own right and not something abnormal or deficient. While some understanding and support would be nice, they don’t want interventions. These views also challenge us from the dominant culture.

Parents/carers

Then there are those who care for people with autism, such as parents and other family members. They are also experts, because they have problem solved a lot of the caring and advocacy issues. But their expertise is of a different kind from those with autism. It is a caring and problem solving expertise. Like me they become experts thanks to their autistic family member and because of their family member’s particular needs. Parents are experts on their children. But we can’t assume that parents are always the best advocates for their autistic children. I know that there are times when my expectations for my son are much lower than he deserves and I have had to be pushed by others to give him more independence – to allow him the dignity of risk.

Professionals

Then there is the expertise of those who work with autistic people using their professional knowledge as teachers, psychologists, speech therapists and paid carers. They are the ones who can go home and leave the autism behind. The pay packet is not necessarily a measure of expertise – there are those who are champions for the person with autism and go beyond the basics of their job description. I have found my best support in some exceptional teacher aides, carers and volunteers – the lowest paid in the hierarchy.

NGOS and community organisations

Then there is the expertise of the non governmental agencies such as Autism NZ and Altogether Autism, who get government money through contracts, and raise money from the community. They are often parents themselves. Their challenge is to increase the representation of people with autism in their organisations.

Public servants

Then there are the public servants – policy makers, advisors, educators and researchers and managers (and their subcontractors), whose job it is to get public money from politicians, and to use it wisely to improve the lives of people with autism and their families.

Politicians

And then there are the controllers of the purse – the politicians.

People can belong to more than one of these groups. For example, some who work in government agencies also have family members with autism.We need all these people to work together to get some good outcomes for people with autism and their families. Our ASD Guideline has been world leading in attempting to bring these expertises together to create this whole of spectrum, whole of life, whole of government guideline.

But how do you turn the traditional power hierarchy around to get the input of those traditionally overlooked – people with autism and parents? One significant step was ensuring that the group advising on the implementation of the Guideline was chaired by a person with autism – Matt Frost, a young man from the sector. There has also been participation from parents and others on the spectrum throughout the process. However, how to get representation from those who are non-verbal or require extra support to participate in meetings – has been discussed but not yet addressed.

New Zealand Policy context

As well as needing all these expertises, government work takes place under a framework of principles and strategies.

As you might know New Zealand has just had an election and has had a lurch to the right. Voters apparently thought that in these financially worrying times we needed as Prime Minister a man with the lived experience of international money trading.

So this policy overview is mainly of the last 9 years and there is no guarantee that any of this, including the work on autism, will continue. But we are ever hopeful.

For the Guideline the most significant current policies are these

Social model of disability

Health and disability policy is based on the social model of disability, whereby people have impairments but it is society which disables. It is up to all of us to remove barriers and ensure the citizenship rights and participation of everybody.  Everyone is inherently equal, but some people have extra support needs.

UN Convention

Hugely significant is the recent United National Convention on the Right of Persons with Disabilities.

NZ Disability Strategy, Ordinary Life Report

Also of great significance are the 2001 NZ Disability Strategy and our 2003 report To Have an ‘Ordinary’ Life. The Ordinary Life report is relevant to people with autism, as it explains how we all can assist the participation of people who need extra support as indicated by the social model of disability.

Legal framework, ODI

The 2000 NZ Health and Disability Act has legal requirements for collaboration and consumer input. Also in 2000 the first ever Minister for Disability Issues was appointed and in 2002 the Office for Disability Issues was started, which now has a monitoring role for the NZDS.

Treaty of Waitangi

But what makes NZ unique is the Treaty of Waitangi and its expectations of partnership, participation and protection which are very relevant to the Guideline work. If we can get the Treaty stuff right I think we would go a long way to an inclusive and respectful society for all citizens. The Treaty and the public policy principles behind it is one reason why NZ has been able to get this far on collaborative autism work.

Right relationships

And there is also something more subtle – the need for ‘right relationships’ – it is attitudinal, involving respect, power sharing and good faith. This is hard, as it requires people to be continually self-reflective in their own behaviours and actions. At the beginning of her term as Prime Minister Helen Clark and her ministers wanted to set out new benchmark for behaviour between government and the community and spelled it out in a ‘Statement of Government Intentions for an Improved Community-Government Relationship’. Here is a quote from it    

‘Government is committed to creating a genuine partnership with the community, voluntary and Iwi/Maori organisations. Building strong and respectful relationships with the community sector will take time and will require hard work, reflection and active engagement’. 

Right relationships are particularly important in disability issues, considering the history.

What now?

The input of lived experience must be increased in all areas of policy development and implementation. 

Research must be framed and mentored by those on the spectrum. We require transformative research whereby the intention is to improve lives. We have an ethical responsibility to use the scare resources for the greatest good.

We must avoid the idea of autism as deficit or something broken and one way is by avoiding negative words and concepts like ‘suffer’ or ‘afflicted with’.

We also have to think of new ways of working, and supporting the young emerging autistic leaders.  

We need to continually reflect where expertise lies, how best to address power imbalances and work collaboratively. We must give more voice, support and participation opportunities to people with autism, including those who are non-verbal or less high functioning. Just because it’s hard is no excuse.

And continue efforts to increase advocacy and funding.

The ASD Guideline is a great chance to practice getting relationships right.