ASD in New Zealand – update
Russell Brown and Mike King had a lively sesssion on Asperger’s Syndrome on Radio Live last night. Russell namechecked humans several times so I thought it would be good to provide an update of ASD policy and initiatives. It was obvious from the callers that there are still significant regional differences, and finding support for ASD – Aspergers particularly – depends on luck. That’s why the thesis that I’m currrently writing is called “Moving beyond love and luck: building right relationships and respecting lived experience in New Zealand autism policy”.
For my thesis I have tried to untangle the current policy process and hope to recommend a consistently better way of doing things that includes the lived experience of people with autism and their families. I’ve got a way to go yet but here is a summary of what I’ve found out.
New Zealand Autism Spectrum Disorder Guideline initiatives
Much of the current concern and awareness of ASD goes back to the death of a teenage autistic girl in 1997. Since then there have been large numbers of papers and reports, committees and research projects mainly from the Ministries of Education and Health. This work culminated in the publication in April 2008 of the New Zealand Autism Spectrum Disorder Guideline, with over 300 recommendations based on best practice knowledge from around the world. It was a world first in that it took a whole of government, whole of spectrum, whole of life approach to ASD (although the adult section was particularly light as least work had been done in that field). The Labour-led government gave $17.5 million in 2007 for this work over 4 years. This has almost run out but hopefully some funding will be ongoing.
A contract was won by the New Zealand Guidelines Group to work on implementation. They set up a group of people including people with autism, parents and ASD professionals as their Implementation Advisory Group*. It is chaired by Matt Frost (who has written for humans). This group has its last meeting next week and an ongoing cross agency group will keep monitoring work programmes. (There is also an ongoing Living Guideline Group which is updating evidence and they first worked on ABA and are now examining medication.)
In the last two years the NZGG’s IAG, and their sponsors in the Ministries of Health and Education, have been very busy. They started by sorted all the recommendations into five priority areas
- Assessment and diagnosis
- Support to strengthen families
- Interventions
- Respite
- Coordination
Several initiatives have resulted. They recommended putting more funding into programmes that were already working well. An example is the training for parents of pre-schoolers with ASD. Autism NZ has been given more money to take their Earlybird course to parents in most of the North Island. Idea Services won the contract for their new ASD Plus parent education course in Northland and the South Island. Tips is a school based programme that was boosted.
Respite was another urgent area and contracts have been given to groups in various parts of New Zealand, and work reviewing respite is ongoing.
A big need was support for families through the diagnostic pathway and a tender was announced earlier this year for ASD coordinators in the DHBs for people under 19. There was not enough money for all the DHBs to have one each so they were encouraged to work collaboratively. The successful tenderers have not yet been announced, and it is possible that some regions will miss out. There is also the issue of people over 19 to address, and currently there is no pathway for diagnosis in the public system. For children and young people there are still long waits up to a year in many regions for diagnosis and as most Needs Assessment and Service Coordination agencies only work with people with ASD plus intellectual impairment (ie not Aspergers) there needs to be a cognitive assessment as well to determine whether the child has intellectual impairment (which may take another 18 month wait). Education has its own diagnostic and support pathway and their assessment process means a child may or may not get help with a teacher aide in pre-school or school.
However, some good news is that resources about ASD have been developed for GPs, health professionals and others (called recognisers and referrers). These have been developed jointly by the Werry Centre, Altogether Autism and the NZGG, and there is now a website where they can be found (as well as a hologram of IAG chair and Aspie Matt Frost) www.asdguideline.com
Behaviour support is a big issue for some autism families and Idea Services recemtly won a contract for services in the Auckland region. A tender for services in the rest of New Zealand has closed and the successful group or groups will be announced in a couple of months.
Apart from all of this the Ministry of Education Special Education is developing a network of ‘go to’ ASD experts so there will be regional expertise available through their 14 Group Special Education offices.
Overseeing all this is a senior officials groups with representation from several government departments as well as Health and Education, including Work and Income, Minstry of Social Development, CYFs and Justice.
Threats
However, while the ASD Guideline work is rolling out new and enhanced programmes, other parts of government are facing cuts and we need to be alert to these.
In education the cuts to community education and restrictions on entry to universities are very negative for people with autism as many have had bad experiences at school and need a pathway back into education such as through night classes. The Training Incentive Allowance which helped people on benefits access tertiary education has gone. There used to be funding for a cluster of schools to get together and employ an ASD specialist who would work across schools in the area and do such things as staff training (including all school staff). A very successful programme ran in the Wairarapa a couple of years ago and is now underway in the Upper Hutt area. However, funding for this was cut for new ventures in last year’s Budget. The special education workers in the Ministry of Education are not considered front line and there have been several staff cuts including to pre-school autism advisors and people who liaised between families and schools. I have also heard of cuts to speech therapist positions. Other staff, already busy, will apparently also take on these jobs. This will probably mean that families have to tell their stories over and over to new staff. My opinions on national standards can be found in earlier posts on humans. A review on Special Education has been underway over the last few months and they will report soon.
Welfare and employment are big issues in ASD. Getting the Child Disability Allowance (not means tested) has been almost automatic for any child with ASD under 16. It is now much harder and parents have to prove that ASD means significant extra costs. On turning 16 a young person with ASD could go on the Invalid’s Benefit even if they were still at school, and they wouldn’t need to keep proving they still had autism. The criteria are being tightened and many people with ASD on the IB are being put on the sickness benefit and work tested. Most people with ASD are willing and able to work but this may require significant support and employers and workplaces to understand about ASD, for example the sensory issues, the need for order, clear instructions and quiet spaces. But funding for employment support has been cut.
Changes to the Needs Assessment and Service Coordination system are likely with current work happening in the Ministry of Health looking at alternative systems such as the Local Area Coordination and Individualised Funding. These will be made public later this year.
However, there are organisations around New Zealand providing information and support. Autism NZ (www.autismnz.org.nz) is running a conference in Wellington in September which includes a stream run for and by adults on the spectrum. ANZ also have branches around new Zealand and some employ field workers and information staff. Altogether Autism (www.altogetherautism.org.nz) also provides information. The Ministries of Health and Education have ASD information about services on their websites. You can also get a free copy of the ASD Guideline or the English or te reo summary through the Ministry of Health and access regular ASD update newsletters.
There are also several facebook pages and websites relating to autism and Aspergers. The current estimate of one percent of the population on the autistic spectrum means many families, schools and communities will have autistic members.
(*Disclosure: I was part of the group which bid for that contract and am a member of the NZGG’s Implementation Advisory Group)
Giovanni wrote on June 15th, 2010 at 1:11 pm:
Thank you Hilary, that was a much useful update. I think I can probably contribute some first hand knowledge on one of your points:
This will probably mean that families have to tell their stories over and over to new staff.
Scratch “will” and “probably”.
ginny walker wrote on July 18th, 2010 at 9:49 am:
When will government agents standup take responsibity for more staff needs urgently from Early age education, health,transport,in home support funded my Needs assessment to respite care and residential care for adult’s services are lacking in Wellington region.
I’m a solo parent of 16yrs old brain injury, Autism/asperger with clusters of seizure of up 4or 5 a day end up in hospital a that’s causing a lot stress and lack resources to help families cope.I’m only receive 10hrs weekly for in home support worker from idea services but if sick noone come and not allways same time every week so so can’t plan my life around agents who don’t have enough funding for Ministry of Health to make sure I get a break or my son able to attend outings or activities like another teenagers.
Who do we as parent air whats not happening to support us to live a better life for our children who can’t talk so I’m worried noone wants to listen or how do I get heard my go to media. A very active mum who log into every group in wellington region for etc Parent2Parent,ASD group,Autismnz,Cloud9, Epilepsynz,and doing 2 Weltec courses to better to knowledge and feed some of my knowledge as a parent of children/adult back to other parents too.
Alyson Bradley wrote on July 21st, 2010 at 12:27 pm:
I was on the guidelines group, probably one of the more neuro diverse individuals within the group, as having to me an interesting mix Aspergers, Bipolar, ADHD, Dyslexia and Dyspraxia, plus other
differences like everyone. While the group itself have been brilliant in being inclusive and allowing me to speak out in my own way, the diversity, experience and varied differences within the group I feel is a credit to those organizing the group, but still feel the group could of been more inclusive of cultural, non verbal and included more individuals on the spectrum. I have to mention Matt Frost who was one of the few on the autism spectrum our chair, who has gone out of his way to ensure everyone is hear, brilliant job. While I found it hard being part of a process that was at times difficult for me, I feel alot has been acheieved, but so much more needs to be done. Of course various reasons many things are not happening the first obvious one that comes to mind is not enough funding to do what needs to be done.
I have huge concerns that the young adults after a certain age get no real support, an age when often most valuable, lack of support still for adults and overall do not feel the real need and urgency for real change is totally understood except by those of us on the autism spectrum. We were the children of yesterday and while early intervention all good, at times I feel maybe first we should let children be just that for a while and develop in their own way, and that early intervention should be for everyone at any age. I also feel all neurological differences need to be dealt with under the same umbrella (Aspergers, Bipolar, ADHD, Dyslexia and Dyspraxia etc… )including autism, and other co-morbids such as ocd, brain damage etc… I feel we should see these differences as neuro diverse and deal with the person as a whole, testing for their varied strengths and weaknesses, rather than giving endless list of labels. As at present its like trying to fit a jigsaw if you have a few neurological differences like my self. For more on this see: http://asplanet.info/index.php?option=com_content&task=view&id=79&Itemid=125
For all those that want change, contact the http://www.moh.govt.nz/moh.nsf/indexmh/disability-keyprojects-asd-guideline-updates we all need to be heard and keep being heard, as I feel the only way for real change.
Ben Seeley wrote on December 27th, 2010 at 2:01 pm:
Hello, I have just recently been diagnosed with Asperger’s syndrome by a Psychiatrist and I feel that employers and other co-workers don’t really understand about the disorder – the sensory issues, ritualistic behaviour, etc. They need to be made more aware of the issues so that there isn’t the ignorance and prejudice that already exists!
I would love to work, but get annoyed at the level of ignorance and prejudice about the disorder! Co-workers in the past have thought that my behaviour is very strange!
John Greally wrote on March 8th, 2011 at 2:01 pm:
I was also on the New Zealand Guidelines Group/Ministry of Health Implementation Advisory Group – whose remaininding work has been passed on to the new ASD Expert Advisory Group.
As a consumer, I see a large foot on the throat of ASD in this country. Not the causation/cure fixation that the US is afflicted by. But the unwillingness to bite the bullet and get on with adult diagnosis and dealing with the legacy issues of ASD, releasing the leadership of the issue to those diagnosed. (Without blind people in pole-position for blind issues you get ded-end bunkum, misdirected funding, and much fluff). Same for ASD in my opinion.
There is room for a professional-led autism organisation in NZ. Same for a parent-led one. But in the end… leadership MUST come from people with autism themselves. No amount of paternalism (maternalism?) can suffice as an acceptable or functioning alternative – which would serve only to proliferate the wrong answers being accorded to the wrong questions about autism over and over.