Nine Autism ORS Myths

“ORS” is the acronym for a special type of education funding, allocated to children with special needs by the New Zealand Government. It stands for “Ongoing Resourcing Scheme.” The funding is allocated to individual students based on their level of need; they are either “high needs” or “very high needs.” ORS funding is a highly sought after thing, which carries a sort of mysterious quality within the special needs community; especially within the autism community, as parents try to figure out why one student got it but another child – seemingly the same or worse off – doesn’t receive it. Because of its desirability and “mysteriousness,” a fair few myths have built up around what is required to get ORS and what getting ORS actually means.

In this post I’m going to share some of the ORS myths I’ve encountered over the years, and try to explain why they are myths. As much as possible I have taken the exact wording of the myth from conversations, forum discussions, etc. Some of the myths I’ve had to summarise more generally, to capture the point more clearly or succinctly.

If you want to find out more about the ORS scheme generally, I have done a previous post introducing the scheme and what we went through to get our son’s application approved, that you may find useful (including links to helpful resources, I’ve noticed some of those links are now broken, I’ll fix those asap!).

Myth 1: An autistic child must know less than 12 words to qualify for ORS. This is quite simply, incorrect. It is true that communication issues are part of an ORS application for an autistic child (hardly surprising), but there are no such tight guidelines as to word numbers (neither officially nor informally). Submitting the number of words that an autistic child knows – whilst it may be relevant to the application – is not definitive of whether the application will be successful. The ORS applications are much more intensive and involved than this myth implies, and do not have simple cut-off points. This theme is repeated in the second myth:

Myth 2: An autistic child won’t receive ORS if they are toilet-trained at the time of the application. Again, this will be a relevant consideration to include on an ORS application, but it is not the magical cut-off point that some claim. Myths like Myth 1 and Myth 2 sadly feed the third myth, which is perhaps the most concerning one for me:

Myth 3: ORS funding is so important that an autistic child is better off not being taught skills early-on, so that they remain severe enough to qualify for ORS when they reach the age of 5. This is plain disturbing, and very messed-up reasoning. With adequate early intervention, it may indeed become the case that the child is so improved that they no longer require ORS. This is not a sad thing, it is an amazing achievement that should be celebrated. Many children cannot improve at that rate, no matter what interventions are attempted, and it is for those most needy of cases that ORS is required. More-over, the “myth” part of this claim is the notion that a child would be better off accessing ORS by remaining limited in skills, than they would be had the parents made every effort with the child from an early age. ORS is great, but it is not more important than a child’s actual and possible development. Neither is ORS the be-all-end-all of special needs education funding, which will bring me to Myth 4 in a second.

I just want to add about Myth 3 that I like to think no parent would ever hold back their child’s skills and development in the hope of getting more funding (quite putting aside the fact that funding rules might change before the child even reaches the relevant age anyway). As much as I want to believe a parent would never do such a thing, the serious tone and manner in which I have seen this myth appear time and again, in a variety of forums, does leave me concerned that at least some parents take it seriously as a suggestion and a possibility.

Myth 4: If your child doesn’t have a successful ORS application, they are unable to access any special needs funding through the school. ORS is a generous funding option, but it is not the only support system in place for special needs children in schools. Schools receive other pools of funding that they can allocate to children with special needs too, and from quick further research I can see other types of individualised funding that appear to be available to students in addition to that more general school funding.

Since my son does receive ORS within a special needs school environment, I am not as familiar with these alternative funding options, other than the fact that they do exist outside of ORS. This web-page is a good starting place for research into those options. (If anyone reading this knows more about those alternatives, I would love to hear about your knowledge and experiences with them.)

This brings us to the next myth, also about the significance of ORS funding:

Myth 5: No child can attend a special needs school without ORS funding. ORS funding does make it possible to attend a special needs school, but it is not true that every child who attends such a school, has had a successful ORS application. This is a myth I used to labour under personally, until speaking to a Board member at one such school. Apparently the Board can – and does – make exceptions sometimes so that high needs children who haven’t qualified for ORS, may still attend and benefit from the pooled funding and services available via a special needs school.

Myth 6: The condition of autism is not enough to receive ORS, an autistic child must have multiple medical conditions. Again, though this would raise the likelihood of a successful ORS application, it is not necessary: Language and social communication problems present in autism, can suffice.

Myth 7: A child must have a confirmed diagnosis to receive ORS funding. This is incorrect; indeed under Criterion 8 in the 2012 ORS guidelines (the criterion best suited to autistic children applying for ORS), it expressly states: “Most students who meet this criterion have a diagnosis of autism but some have another, or no, medical diagnosis.”

Myth 8: Only children with “very severe” autism qualify for ORS. I suppose the truth of this depends on what is meant by “very severe.” In most people’s minds that wording is going to conjure up the corner-rocking, self-harming, non-verbal autistic child (or something similar). In which case the myth is incorrect, as a brief meeting with my son and some of his autistic classmates, would quickly make clear.

Myth 9: An ORS application must be as negative as possible about the child’s abilities, and must only be negative. ORS applications are far more complex than that; they need to address the relevant criteria, but they should also express the ways in which the student can and does benefit from appropriate assistance. A wholly negative application is not only un-necessary, it is also potentially going to fall short of what the application is meant to achieve, and therefore be more likely to fail since it hasn’t provided all the information the assessors require. This may sound counter-intuitive since you’re meant to be presenting a case as to why your child so badly needs assistance, but it was advice I was given by the main person in charge of my son’s application, and our successful application was most definitely not wholly negative.

There are a few other confusions about ORS that fall short of what I’d call “myths.” Such as the idea that ORS can be taken away from a child who has already been receiving it for years (this was true until last year), and the idea that ORS funding comes in multiple tiers, the highest of which is known as “high” funding (in fact ORS comes in two tiers; high and very high, so the “high” funding category is actually the lowest of the two levels). These are easy mistakes to make, and haven’t gained the same sort of chinese-whispers momentum as the nine myths above.

I must make it clear that I am no expert on ORS and autism ORS applications. I have read the publicly available official documents and guides to ORS, I have spoken to various professionals in the area, and know a group of autistic children (including my own son) who have successfully applied for and received ORS. I am open as always to corrections if I have made any errors. I would also be interested to hear if you know of other myths that I haven’t covered; this could not possibly be an exhaustive list.

Yes, ORS is important. Yes, ORS is hard to get for many families of autistic children, and yes I do believe it should be more widely available. But it does not help if parents are faced with myths that further complicate (or often, pretend to simplify) the ORS process. I hope this post helps reduce the impact of those myths, for at least some New Zealand parents.

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12 Responses to Nine Autism ORS Myths

  1. Angela says:

    Good informative post! When I was on the Board of my son’s special needs school we certainly had children who were not ORRS funded at school-economy of scales-a certain number of children can be supported as the school has all it’s funding in a big “pot” so everyone can benefit.

    Also-a truth for this funding-get the name of the Chief Verifier and harrass the crap out of them if you get turned down-most people get turned down first time-many families and schools just give up then.
    Don’t feel bad if other kids worse off than yours don’t get it-fight for your kid tiger mother!!!! The squeaky wheel -you will be astounded what a really “annoying” or as I like to see “advocating” parent can achieve for their child!
    Hugs to all you fellow travellers on this journey!

    • Thanks for that Angela!

      And for those thinking about appeals, after an application has been turned down, you may find this information helpful too (from the ORS guidelines):

      The verifiers make every effort to help parents reach an understanding of the decision. If, after a number of applications and reviews, the parents are not satisfied with the verifiers’ decision they may write to the Secretary for Education to request an appeal under Section 10 of the Education Act (1989).
      The appeal process is arranged independently of the verifiers. The Ministry of Education and the parents agree on an approved arbitrator from outside the Ministry to conduct the appeal. The Manager Assurance and Eligibility presents the Ministry’s position at the appeal hearing.
      An appeal is a formal process made by the parent or caregiver (and not the early childhood education centre or school).
      If you would like more information on the appeal process please contact your local Ministry of Education, Special Education Office or call the Special Education Information line on 0800 622 222

  2. Jack says:

    We are just about to start this process and are not sure of anything. We are going to have help with the application and have been told of variuous approaches. They match quite closely with what you have said, escpially myth 9. The progress our son has made has been great, but there is still a long way to go. By showing how far he has come over the last 2 years with support and hard work from him will form the core of our applcation I think.
    Also I totally agree with your comments on myth 2 and 3. No parent in their right mind would purposely hold back on helping their child. I would give anything to sort out why he is ambivalent to toilet training.

    • Hang in there Jack, my son didn’t make real progress with toilet-training until he was about 4 and a half. Even now, at six years old, he still has issues sometimes. He has various maddening anxieties and obsessive behaviours around his toileting, but again, we’re making progress and that’s what matters. At the time he began school, he was largely able to do the main toileting tasks unassisted, the main issues he needed help with still (from memory), were basic wiping skills and hand-washing. (I should really look up the details on his ORS application to remind myself of the details.)

      Sadly, there are some autistic children that never seem to overcome the toilet hurdle; I’ve met one particular autistic ten year-old who was still in diapers. Having said that, my understanding is that this tends to be true of the autistic children who also have clear intellectual disability in addition to the autism, and from what I’ve read about your son from your past comments, he sounds more like my own son (very challenged but tries hard and making slow but very real and important progress), than a child with intense and permanent intellectual disability. Obviously you’d know that best, it’s just a hopeful musing on my part, for your family.

      I would have liked to reproduce our ORS application for my son, so people can see what one looks like, and see an intensive snap-shot of an autistic child (it’s quite enlightening and eye-opening I think, since it’s so detailed). But I wouldn’t feel comfortable sharing it, not least of all because it’s an official document compiled by a range of officials for a specific purpose, not intended for the public. The Ministry of Education’s site does have examples of the type of child that would qualify under criterion 8. I’m not sure if that will help, but I’ll reproduce them anyway:

      David meets Criterion 8 at 4 years 10 months – a brief profile
      David is not involved in most activities and has a brief attention span for anything not self-chosen. He completes a favourite inset puzzle of nine pieces. Left to himself he runs a train around a track constantly or flicks very quickly through two favourite books about trains. He is distraught if he can’t find these books at every kindergarten session.
      David follows very familiar routines, such as washing his hands before morning tea, but needs frequent adult prompts. If the routine changes, or if there is a lot of noise, David reacts by screaming and hitting. When directed he urinates in the toilet at kindergarten but only does a bowel motion in a nappy.
      Given a range of appropriate prompts, David matches colours and shapes, makes lines on paper and recognises big and little. He rarely shows generalisation of learning in new situations and does not engage in pretend play.
      David leads and pushes to make his needs known or screams until someone works out what he wants. He often uses unintelligible jargon and echolalia but names some common objects.
      David does not join in peer social play and needs an adult to facilitate turn taking. He relates to teachers through gestures and grunts when he needs something, although he smiles at his education support worker when she arrives at kindergarten.

      Henry meets Criterion 8 at 14 years – a brief profile
      Henry has a diagnosis of autism spectrum disorder. Prior to a successful ORS application before starting school he was supported by an early intervention team of an early intervention teacher, speech-language therapist and psychologist.
      Henry is now 14 years old and attends his local secondary school. His communication is extremely limited. He has difficulty understanding or communicating through non-verbal behaviours, such as gesture, facial expression, eye-to-eye gaze and body postures. Henry uses single words and short phrases, many of which are repetitive and do not always fit the situation, so it is difficult for those who don’t know him to understand what he needs. He is very much in his own world. He does not understand information not related to his interests and lacks curiosity about others’ activities.
      Henry has an extremely narrow range of interests in which he engages independently. These include playing specific computer games and drawing trucks with details of particular makes and models. Henry memorises names and simple facts about trucks and when left uninterrupted is absorbed for lengthy periods.
      Tasks need to be broken into small steps and Henry relies on visual cues to help him understand what is required. He needs to be prepared in advance for any changes in routines, as he struggles to regulate his behaviours and becomes distressed and aggressive in situations he does not understand.
      It is extremely difficult to keep Henry on task and as a result, his learning achievements are delayed across all curriculum areas. However, with one-to- one support he may engage for short periods with school work, which is adapted for him by a specialist teacher. Henry will use personalised computer programmes to participate in reading, writing and maths tasks based on his specific interests or that he is able to relate to his daily life.
      Henry shows little interest in his peers and his lack of ability to determine what is acceptable also isolates him socially. Frequently he misreads social situations. Sometimes he can be supported to join small groups but will not stay if he feels anxious. His anxiety is extreme at times. He starts muttering loudly if he is expected to work in a group.
      Large groups are very difficult for Henry. He is fearful of unknown people, refuses to attend some events and is unwilling to attend school assemblies. He is sensitive to touch, sounds and smell, which sometimes act as a trigger for aggression and he hits out at anyone near him.
      Henry’s programme now includes transition planning and the team supporting him are working with his family and community agencies to explore recreation and future work options that interest him.

  3. SD says:

    We have a year to go before applying for ORRS, but the thought of it is never far away!
    I have a couple of queries that you may be able to help with.

    Is there is any reassessment process for kids who start school without funding but then really struggle in a mainstream environment?

    Is it correct that the observation part of the assessment for ORRS funding is based on one assessment day in the pre-school i.e” a day as a snap shot of how the child functions”?

    • Hi SD,

      Could you clarify your example a little? For example, if you mean someone who was denied funding and it turns out they should have got it as evidenced by what happens at school, then yes, they can re-apply 6 months or more after the last application / review, since this would be considered new information relevant to their eligibility. Or do you mean an example where the family didn’t apply for ORS at all, and then discovered after their child starts school, that they should have applied? The latter example is hard to imagine being eligible since ORS is only for high and very high needs students, whose needs would be quite obvious and concerning before they begin schooling. If the child wasn’t previously involved in an early education centre that could have picked up on the issue (and assisted the ORS application process), then yes they also come under a relevant application group as a “5 – 6 years old with little or no involvement in early childhood education.”

      Obviously, it is always best to apply and get turned down (and re-apply if need be, taking into account the verifiers’ feedback), then not to apply at all, if there is a strong suspicion that the child needs high levels of daily help.

      And no, it’s not quite correct that the observation part of ORS is based on a one-day assessment at preschool. That sounds like the combination of two parts of the ORS process, thrown together in a mixed up way. The first part it sounds like is the process where the verifiers couldn’t reach a consensus on an application. This is called an audit visit: “If all the verifiers do not reach an agreement and the application appears close to meeting a criterion, then two verifiers may visit the child’s early childhood education centre or student’s school to make sure all relevant information has been presented.

      The other part it sounds like to me, is that an application will include observations from relevant professionals, explaining what sort of challenges the child faces on a typical day. For example, my son’s speech therapist and occupational therapist variously observed my son in preparation for the application process, to gather together measured / timed examples of what happens and why my son needs assistance. But that again doesn’t exactly sound like what you’re referring to; it’s not like a stranger comes along, observes and makes notes, then decides whether the application is successful or not, as a standard part of the application process. It depends on what and who you had in mind in your example of a one-day observation, as to whether it is accurate.

      Again, I’m no expert, and of course there are experts who will be able to answer your questions better than I can, but I hope that provided some clarity..? If not, do feel free to ask further questions and I’ll help the best I can.

      (And as a minor aside, it’s no longer called “ORRS” because they dropped the “reviewable” (extra R) word from the title last year: Now it’s just “ORS”. 🙂 )

  4. SD says:

    Hi A&O,

    Thanks for the information.

    In my first question i was referring to children that are initially denied funding. I imagine that the Ministry deals with borderline applications at times so it is comforting to know that for children that miss out (but in reality need the support) there is another avenue.

    I had based my second question on information i had been told by another parent (but obviously not in total context). so thank you for the clarity.

    My son is receiving early intervention from the MOE who have indicated that they would co-ordinate the application process. Do you know if it is common for other families to seek non MOE involvement in the process.

    SD

    • Hi SD,

      I don’t know if it is common, but there is definitely room for it. The Ministry describe it as “a process where the parents, specialists, teachers and others, who all know the student well, provide information about the student’s needs”, that must be co-ordinated by “an educator” (in your case, someone from the Ministry itself, which we had too, and is a good start!) So as long as “an educator” is over-seeing the process, all those other sources can contribute too. The more the merrier in my opinion; it provides more information and professional perspectives for the verifiers to use.

      All the best with your application. I still clearly remember the anxiety and uncertainty of waiting for the answer, and the utter elation when we were told he would be getting ORS (and elation yet again when we were told that he wouldn’t have to be reviewed in three years time. Though the special school he was with assured us that they’d never kick out a student just because he lost his funding, unless the parents decided along with the school that leaving was the best for the child. His school is great.) I hope your application process goes smoothly and you get the answer you want and your child needs 🙂

  5. blogginglily says:

    I don’t know ORS, and don’t NEED to know it, but Myth 3 is horrifying.

    • It’s the sort of thing you don’t want to even believe possible. But I’ve had (and overheard) conversations where one parent quite literally encourages the other not to push to teach a particular skill simply because it will lessen the chances of getting ORS. They say to wait until the ORS is approved, since that takes precedence. To my mind, that’s just warped (and probably a sad indictment too on the system itself and the desperation it creates in parents).

  6. giovanni says:

    “they need to address the relevant criteria, but they should also express the ways in which the student can and does benefit from appropriate assistance.”

    This. I’m still convinced two lines form our psychologists nailed the application for us, and they were about how our daughter might tolerate being in the classroom, but would not be engaged in learning without specialist help.

  7. John says:

    Thanks for the info, but I do understand why some parents would say their child would have been better off without them trying so hard with helping them in the younger years. I personally don’t regret helping my autistic child, and he was the most communicative one in the special needs class (age 8), but dumped there due to behavioural difficulties in mainstream. He was denied the extra funding the school needed to support him several times (in any class), and in exasperation they have now had to kick him out of the special needs class also due to biting the teacher aids etc, and he is completely suspended with no schooling at all now, only allowed back on the condition that the government supplies the help they need. I hope they do…

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