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Your 57 NDIS Review Questions. Answered.

These are the broad topics you’ll find in this post.
You can also find a whole series of posts at https://www.thegrowingspace.com.au/library/

1. Reports and preparation for reviews

2. Funding

3. Types of reviews

4. The review process

5. How to get a review

6. How to chase up a review or, When you need to go higher

7. Plan expiry

8. Random Stuff

Reports and preparation for reviews

1. I’d like help with the format for making clear what would be helpful to ask for and why.

This is just so individual – every person with disability has different goals and different ways to achieve them. If you’re stuck on what a typical life looks like, check out this awesome document produced by the NDIA Independent Advisory Council: https://bit.ly/2Ky6ymp and if you’re stuck for what skills are typical of different age groups, check out http://media.focusonthefamily.com/fotf/pdf/magazine/checklist-4-lifeskills.pdf  (It’s American, and most of you won’t need to worry about learning to shovel snow, but there are some great ideas in this list)

2. What do they ACTUALLY want to see??

I THINK they want to see your great grandmother’s first pet cockatiel’s remains. I dunno, but I reckon this would be a good start: https://www.valid.org.au/10-steps-excellent-ndis-therapy-reports

3. How much ahead should I prepare?

As soon as you request a review, you should start gathering evidence to support your requests, and provide it to the Agency. For scheduled regular annual reviews, I’d be asking therapists etc 8-12 weeks before the plan ends to start writing! They can be slow to respond, and if you only give them a week’s notice because you just got a call to schedule your appointment next week, you’re really giving them an unreasonable timeframe. They may not be able to give your report the justice it deserves.

4. Which reports should I get ready?

Reports are great for all of your Capacity Building support categories – that usually means therapists, but, that depends on how you’ve used your funding to work toward your goals. Always. Be. Working. Towards. Your. Goals.

5. Examples of how we should word needs and ways we can use 1 goal to work for 2 or 3 goals in one at the reviews 

I’ll write another whole post about goals. NDIS are starting to use “SMART GOALS” now – here’s a cool presso about developing goals in the meantime: http://www.dhs.state.il.us/CBL/DDWritingMeaningfulGoalsandMeasureableObjectivesVersion2.pdf and googling “SMART Goals” will help too.
And so will think link from the awesome Disability Services Consulting gang. http://www.disabilityservicesconsulting.com.au/resources/why-language-matters

6. We provided paper and electronic copies of assorted reports at annual review, I also uploaded them in the portal. Yet I do not know if ANY of them were looked at and considered. I suspect they were, but….

Mwahahahahahaha. That upload feature? I call it “The Black Hole” but you should be OK if you emailed and gave paper copies in person. It will depend on the planner’s workload, and maybe on whether her partner yelled at her that morning, though you’d like to think that wasn’t the case, we’re all human. At The Growing Space, we tend to “assist” at the planning meeting by pointing out relevant bits in the reports as we go along, with the least dangerous assumption, which is that the reports may not be read later. I think they are though, usually.

7. Hubby’s review is coming up early next year. I’m scared that the funding he received that pays for his therapy, personal training etc will be cut (he will have used every last cent of it by the time his review is due). Apart from submitting reports from his therapists, what else can we do to try to get the same amount of funding for next year?

We all get scared about this. I hear you. It’s not good for our mental health! One option is to request a new 12 month plan rollover without a formal review with the funding remaining the same – sometimes this will be granted. If not, make sure your Hubby’s goals are fully in line with the supports and services you want funded, especially for any capacity building therapy type support needs. Good luck!

8. Can you explain the purpose of goals? I’ve heard people say things like ‘you can’t access house cleaning if it’s not in your goals to live in a clean house’. Is it really necessary to specify a goal like this, in my mind it should be assumed an adult pwd would want to live in a clean house???

Yeah, It’s a weird one. The NDIS act says (in different words) that funding must be tied to goals, so I always suggest that at least one broad goal, like “I want to live an independent life” will cover most of that kind of common sense “core” stuff.

9. Aside from therapist reports, who can provide evidence that the planner might consider? Eg, teachers, “mainstream” (not NDIA funded) mental health workers, sports coaches? Is there a link to a guide that will help them say what needs to be said in language NDIA will understand?

This guide was written for therapists, but equally applies to others who might write reports for your review. https://www.valid.org.au/10-steps-excellent-ndis-therapy-reports  At The Growing Space, we work hard to steer people to innovative ways to meet their goals, so your question is a good one for my team to think about too. Thank you!

10. Also, Carer’s statements. Are they really worth the time and effort? I keep getting told to do one but I feel like I have to spend hours prepping to tell them everything verbally and have it completely ignored, why should I have to put it in writing?

Yes.  Do it.  Then recycle and edit it next year. It’s a baitch. It’s painful, it drags up grief for many, but planners need to know what’s going on for you that might impact the care the person you love is getting. Do it with a friend, and chocolate, and scotch, or gin. Write a silly one, and then cry and write a serious one. It could also be valuable if you end up at the AAT. The lawyers do read it and interpret it according to the law. Which can be somewhat different to the Agency’s approach at times.

11. Last question might be a bit niche but if your child is diagnosed with a second disability after entry to ndis, what is generally required to demonstrate this and have it make a difference to planning?

It could well make a difference to your funding. If you’re autistic, and then lose your vision, for example, your needs and funding will, be necessity, be quite different. If the new diagnosis isn’t for something newly acquired though, and you’re just collecting labels, that’s probably not gonna make much difference. But it might. It won’t hurt to give the Agency a copy of the formal diagnosis from the relevant professional.  It could also be valuable if you end up at the AAT. The lawyers do read it and interpret it according to the law.

12. Can you insist on a face to face meeting for a review of a reviewable decision?

Good question. I don’t know. I don’t think so, as often the review goes interstate etc to be reviewed by someone with fresh eyes and you don’t actually ever talk to anyone. I’m *fairly* sure there’s nothing in the NDIS Act that requires the Agency to allow this (but anyone, please correct me if I’m wrong)

13. Can you ask for a specific planner to review the plan?

You can ask, but I’m would be almost 100% certain it would be denied. One point of a RORD is that someone new makes a decision based on the available evidence (which is why you should always submit new/better/awesomer evidence when you request a RORD.

14. What should therapist reports include? 

Here’s a link to an awesome guide to therapist reports https://www.valid.org.au/10-steps-excellent-ndis-therapy-reports

15. What assessments tools do they want to see that will make it easier to support higher level of support needs? (ASD Level 3 and Severe ID).

That stuff will depend on the age and needs of the person. I’d be looking at an updated DSM5 diagnosis for both ASD and ID, or just some really good reports from an OT or similar therapist, with an emphasis on functional impairment, rather than just IQ numbers etc. An ABAS can be useful – there’s a huge range of tools – a therapist with lots of NDIS experience is probably best to ask. Not me. I’m just a daft Support Coordinator with a Certificate IV.

Funding

16. What if you, for some reason, couldn’t use the funds, can it be documented to show you you have attempted to or don’t have the services available to use them?

If you needed that funding, and didn’t use it for valid reasons, I suggest you document those reasons, in writing, and make sure the planner has that answer, in writing. Otherwise, you run the risk of someone internally, higher up the food chain, cutting the plan because they don’t have that information. Providing that documentation doesn’t mean you will get the funds again, but it might increase your chances.

17. Happy with first plan…. how can you go about review to have a continuation of that level of funding?

You kinda can’t, though when you are called to make a regular scheduled plan review meeting, you can always let them know nothing has changed and you are happy for another 12 month plan with the same goals and funding. Whether they honour that or not, is up to the Gods.

18. How can you effectively request a plan that lasts longer than 12 months?

“My disability support needs are stable and I’d like a plan that last two years please.” Request it in writing and in person at your review. There are no guarantees, and it’s less likely to happen for a first plan, but there’s certainly no harm in trying! Be careful though, you might find the plan comes back with less than what you need and you might be stuck waiting for a review for longer…

19. If there is money left over at the end of a plan because you haven’t been able to access relevant therapies, is this detrimental to what you will get in the next plan? Will it be less?
    😉

It should only affect the new plan if you haven’t used it because you didn’t need it, not if you couldn’t find providers, didn’t understand the plan, were in hospital etc. That doesn’t mean the new plan won’t have less – each review looks afresh at your situation, goals and needs.

20. I’m seeking a review of a reviewable decision due to severe cuts to funding. What can/should I be providing to help get what I want, considering it was all provided at the annual review and they ignored it?

Definitely approach your local funded advocacy agency – you can find your local ones by plugging in your postcode here: https://disabilityadvocacyfinder.dss.gov.au/disability/ndap/

21. How do I ask for a review where the support under an NDIS plan is less than the supports that I’m currently receiving, before transitioning? There is supposed to be no disadvantage to changing over.

Once you have an NDIS Plan, you have already “transitioned” and state funding stops the day your NDIS plan starts. For you, the process will be the same as any review of a reviewable decision. There are a tonne of links and answers to that question above, and you might find more help at https://www.thegrowingspace.com.au/library/ I wish you all the best!

22. Why did they reduce my sons funding?

Could be any of a HUGE number of reasons – your son aged out of early intervention, he made progress on his goals, the planner didn’t like your haircut, he didn’t make progress on his goals with the funding last year, the scheme actuary is worried the scheme is overspending, you got too much in the last plan… I wish I could answer that better.

23. My review question is how best to state that my daughter got $120,000 last year but only used $60,000 then received only $30,000 this plan but needs what was spent last year..namely $60,000.
    How best to achieve this?

If you needed that funding, and didn’t use it for valid reasons, I suggest you document those reasons, in writing, and make sure the planner has that answer, in writing. Otherwise, you run a greater  risk of someone internally, higher up the food chain, cutting the plan as you’ve experienced. Proving that documentation doesn’t mean you will get the funds again, but it might increase your chances.

24. ID like to know how they decide how much funding you get and how they decide which category?

That’s a topic for another post, but googling “NDIS ACT section 34 reasonable and Necessary” will give you a good start. In general terms, however, factors taken into consideration when figuring out your funding include your age, stage of life, primary disability, functional impairment, living situation and natural supports. The category funding will be figured out by linking the supports required with your goals.

25. Why do LACs and call centres say to spend whatever funds you need while waiting for a review of reviewable decision outcome? What happens if your review does not result in increased funding and you have spent a year’s funding in 6 months?
    1. Because they do not live with disability nor care for someone with disability.
    2. You’re stuffed. If it’s really life-threatening stuff though, the Agency will eventually come to the party, if you haven’t stroked out with stress in the meantime. Sorry. Bad form disability reference there. It’s late. I’m tired. I’m on my seventh of eleven pages of answering review related questions tonight.

26. What are the reasons you don’t get what you have asked for when you have reasonable requests requested by trained professionals. Instead of reviews can they just let you know what areas they need more info about. For example, if they cut funds due to lack of use can they just have you write a letter explaining wait times in the country, therapist change overs or being unable to use funds due to ndis mistakes!

This is a big question, and out of scope for this post.  https://www.thegrowingspace.com.au/ndis-tips-how-did-they-come-up-with-the-dollars-in-my-plan/ Has some of what you are looking for – You’ll need to subscribe to read it, but a free subscription will work for this article, and if you want to read more, you can claim the subscription fee on your NDIS plan if you’re self or plan managed with a good plan manager.

Types of reviews

27. What’s the difference between change of circumstances review and the review of reviewable decision..

A Review of reviewable Decision (RORD) is when you don’t like a decision the agency has made, like the amount of funding in a particular category, or a category was missed etc.

A change of circumstances review is when your plan was OK, but major stuff happened (moved house, lost a job, got a job, carer family member died etc) and  you need your plan reviewed for more funds, or funding in different buckets, for example.

28. Yes, process of reviews how to do a review – what they are called and time period – for example what is a lite review – desktop review – review of reviewable decision – review based on circumstance changing 

There’s a bunch of posts on that here: https://www.thegrowingspace.com.au/category/ndis/ndis-reviews-and-changes/  You’ll have to sign up to see them – some are free, for others you’ll have to pay a subscription (which you can then claim from your plan if you are self managed, or have a good plan manager). And here’s some info from the horse’s mouth, too https://www.ndis.gov.au/medias/documents/h6d/h24/8804044996638/Plan-Review-Participant-FAQ.pdf

29. Hi Sam, any idea why Feros care are conducting the plan reviews?

Because that is part of their job as the Local Area Coordinator. 80% of plans and reviews will be done by LACS, only 20% will be done by the NDIA, though the NDIA does all approvals.

30. I’m in a situation where I’ve grounds for both change of circumstances and internal review. Ie the plan wasn’t sufficient and things have changed. Is the process the same for both? Do both go to the same level of expertise to review? Is one quicker? Is one more thorough? Will one get a better result?

Yes. Yes. Sometimes a CoC will be quicker if the change means someone is a great risk ie: leaving jail, becoming homeless etc. Probably not – depends on the change of circumstance.

31. How does one do a “light touch review”? Through LAC or contact NDIS directly?

Either, but I have heard that some LAC’s tell people to go to the NDIS to request it, and I’ve heard some NDIS offices tell people to go to their LAC’s. F*ck knows, really.

32. Steps to getting a review, types of reviews.

There’s a bunch of posts on that here: https://www.thegrowingspace.com.au/category/ndis/ndis-reviews-and-changes/  You’ll have to sign up to see them – some are free, for others you’ll have to pay a subscription (which you can then claim from your plan if you are self managed, or have a good plan manager). And here’s some info from the horse’s mouth, too https://www.ndis.gov.au/medias/documents/h6d/h24/8804044996638/Plan-Review-Participant-FAQ.pdf

The review process

33. How does the review actually work? Do you get to speak to someone directly to clarify what was in the plan/planning meeting? I believe a lot of our stuff was taken the wrong way. What about the items that were not included in the plan (assisted technology etc) do they just ignore what they don’t want. What about the OT reports that were included but the recommendations not followed? It’s so confusing? The amount we received didn’t even cover his current costs. Thank you 🙏

Hmmmm… There doesn’t seem to be a lot of consistency. If you ask for a RORD you might find that the whole thing just “happens” like magic, and you had no further input, other than your original RORD request. You should not expect that the NDIS will contact you to gather more information about the reasons you are requesting review, nor more reports to justify your request etc. If you ask for a RORD, I recommend that you provide all the evidence the agency might need to give you a fair answer, in writing, at the time you ask for your review, or very soon afterwards.

34. Can we see a draft of the plan before it is finalised please?

Pretty Please? This is actually a part of the much heralded new “New Participant Pathway”, coming soon to a location near you. Sometime. Hopefully soon. Don’t hold your breath, you may die. But it is coming, and is already happening in some areas. Yay!

35. Can we request, do we have a right to view our plan before it is approved? If we have cuts/are denied things, do they have to list reasons?
    1. I WISH. (this is however, a feature of the “New participant pathway” so hopefully you will be able to, soon.)
    2. I reckon they do, if you ask for a review and are denied on review. But other here have been told differently. Sorry. The Agency is, at least, consistently inconsistent?.. (cocking my head to one side like a cavalier puppy)

36. How long will my old plan be active?

Payment requests can generally be made from the old plan for about a month or so (I don’t *think* there’s any consistency on this). If, however, you miss the boat, don’t wig out, you can send in a manual payment request form like this:  https://www.ndis.gov.au/medias/documents/self-manage-payment-request-docx/Form-My-Plan-Purchase-Payment-Request.docx  (I’m sorry the NDIS have a shit website and this link is so long. It’s not their fault. DSS made them do it that way).

If your plan is Agency managed, your provider can send in a manual payment request too, so don’t you get lumbered with doing that.

37. If the Participant has a DSMIV ASD Diagnosis, is it true that if they get it reconfirmed under DSMV (with a severity level) they won’t have to go through all the functionality questions at each review?

Most probably. Usually. They are not 100% consistent about this.

38. Can I still use the funds from my old plan even if/ until my new one comes in?

You can only claim for stuff during the life of each plan. If you’ve had a gap between plans, when your new plan starts, the old plan will (it might take a week or so) be extended up to the day before the new one starts. You’ll need to make claims from the appropriate plan that corresponds to the dates you used/bought the support.

39. What should I should do if my review hasn’t come back and my old plan has expired? 

Sweat. And call, drop in and email, and then contact your MP if you need to.

40. Are annual reviews done face to face with LAC? Why are plans done with LAC then passed to someone else to complete and sign off? Too much information gets lost in “chinese whisper” and or documents not read in their entirety.

Annual reviews are generally done face to face, whether with LAC’s or NDIS planners. If you’re asked to do a phone review and you don’t want to, please ask for a face to face review.

41. Why do some participants find that asking a question on the telephone to NDIA ends in a review being processed, without the participant realising that this question equates to requesting a review. A review is then spat out and the participants only recourse then is to ask for an AAT review. The participant did not get the opportunity to provide any evidence/reports to back up what they were asking in the question, a review was simply processed and a letter issued advising of this with the next step AAT as section 100. If there was a better process in place, maybe the AAT’s time and advocates time may not be wasted if the initial question was not taken to be a review request and a review could actually have been done by NDIA. Crazy.

I have a quiet solution to this. Don’t ask the NDIS stuff. So sorry you went through this. Anytime you make a complaint about something that is a reviewable decision (there’s a list of them in the NDIS Act) it could be taken as a verbal request for review. Not that the NIDS need you to request a review for that to happen. The NDIS Act gives the Agency the power to review your plan at any time, even without your request. Yikes!

42. When should I hear from NDIA about my review? 

When “should” or when “will”? You “should” hear within a few months, but it could be a few days, or more likely, many months. The NDIS is understaffed. The people in there are working headless, day and night. If you haven’t heard in three months, I’d start nagging a little, and at six months, I’d be knocking on the door of the AAT and/or my local federal politician. Good luck!

43. How do you know if the LAC has taken the necessary steps to trigger a review when requested.

You don’t. Sorry. It sucks. There have been many suggestions made to the NDIA to have a “tracker” of some kind available through the portal, so that a participant/nominee can check at any time what stage of any internal processes you’re at within the NDIS. Fingers crossed that when the NDIA hopefully is able to wrench the website away from DSS and get their hands on their own portal, we’ll see these kinds of improvements. Feel free to send an email to the NDIS making this suggestion at feedback@ndis.gov.au

44. We didn’t get our review of a reviewable decision because my daughters new plan will be done on the 10th of dec, can I still make a complaint or will this be used in her new plan to help get the funds she needs this time.. (if that makes sense)

It does make sense. There’s conflicting info about the answer though. The AAT have basically said that you shouldn’t give up your right to review because you’ve started a new plan, and that the AAT’s decision should be reflected in the new plan. I don’t know how that’s panning out in real life though. Sorry I’m not more help on this one.

45. What paperwork should I receive after what I think was a RoRD interview?? I just received a new plan.

Just your new plan usually. If you were denied something you asked for, you can ask for the reasons why in writing, and you could then  se this if you decide to go to AAT for further review.

46. Who does the review of the reviewable decision?

An NDIS planner delegate who has “fresh eyes” for your plan.

How to get a review

47. If you have an issue with your plan, what is the best way to let NDIS know.,?
    Visit the local office or phone or email?

Yes. All of the above.

 How to chase up a review or, When you need to go higher

48. What rights do I have in choosing my planner?

Yeah nah. Although, if you have a horrendous time with a planner, or she’s your ex’s new partner, or your old boss and you hate his guts, it is very fair to ask for a different one. I’ve found the Agency to be obliging when there are genuine valid reasons for requesting a different planner (and same for LAC’s)

49. What should I do if I haven’t heard from them?

If you’re able to drop into an NDIS office, do it. Otherwise you’ll likely be sending emails into the black hole, or leaving phone messages that get sent to the same place. Sorry. And I’m extra sorry for regional, rural and remote peeps who have no option. I’m sorry this extra sucks for you.

50. I’m not happy with the outcome of my review. What can I do about it?

You can make a request to take your review to the Administrative Appeals Tribunal (AAT). Most (95% of people who go to the AAT are offered and accept a settlement before reaching the actual tribunal). This saves you having to go to the full Tribunal and potentially having your life exposed to the world, and also means the NDIS doesn’t have to risk losing at tribunal which they may not want set as a precedent for others.

51. I think it might be helpful also to have a list of key precedents from AAT cases summarised with they key elements they got an outcome on in case people want to use these as part of their review application for justification.

Check out this AAT Quarterly report at https://www.latrobe.edu.au/lids/resources/aat-ndis-decision-digest

Also, check out his twitter feed if you’re a twit https://twitter.com/darrenodonovan

And check out this awesome blog too: https://ndiscases.blogspot.com/

52. My question is why was I taken off self managed for $7500 and put on plan managed for $4000 as cost of manager is $970?? Whom I can’t find either n have rang ndia asking for light review.. Got more forms spoke again ..still waiting..son has had no appt.or help for over a month now ..like we don’t have enough to do!! Single mum here with yr12 grad n 9 yrold help!!

ARRRGGH!!! I feel your pain! If you can get into the office and cry, that might help. I don’t really mean that. Wait, yes I do. I don’t know. Make sure they know how urgent this is and that your kids are missing out on services because they haven’t made this change yet. Make your request in writing, via email if you can as a follow up too.

53. A clear interpretation of the Review of Decisions Operational Guideline , specifically Sections 5.8, 5.9, 5.10. My interpretation is very different to the Planner’s they have advised that they do not have to provide written notice of the Review of Reviewable decision and they do not have to provide a statement of reasoning for the decision. Planner reviewed a plan made changes, verbally instructed the participant of the changes and declined the request to provide written notice statement with reasoning for the changes. Participant is not happy and does not have details of reasoning as planner spoke so fast details could not be documented. This is frequently happening in the Hunter one planner advised a colleague that they had received a directive not to acknowledge Review of a Reviewable decisions and to only put through unscheduled reviews.

Yuck. I’m not a lawyer though. The NDIS Act trumps the guidelines though. I’d be rereading The Act. I think they do need to provide a reason though. Maybe go above them and ask?

54. This is what happened to me. I went to AAT for a review just to find that there was no paper trail and hence no decision made and could not pursue it any further through the system. I was left with another delay tactic which is to apply for another section 100 on the new plan.

This crap makes my blood boil. A review request can be made by email, letter, phone, in person or bloody carrier pigeon or even fax if needed (does the NDIS have a fax machine? “What *is* a fax machine?” asks all the millennials). Regardless, in writing is ALWAYS a safer bet – by email. Or even go into an office if there’s one close enough, and ask then to give you a receipt for your correspondence.

55. I’ve had my review in the AAT and am now waiting for the NDIA to implement the decision of the court which must be done “as soon as practicable”. How long would it be for the NDIA to be in contempt of court? 

Great question. Luckily, smarter people than me have answered it as per: https://twitter.com/darrenodon…/status/1063205551704698880
Unfortunately, with NDIA it seems to be strings all the way down. Which is the most outrageous, awful injustice… At AAT you should always request that a new plan is activated within a specific length of time e.g. 14 days. (not my words –Sam)

Plan expiry

56. What do they plan on doing about the “gap” especially when providers are refusing to provide services during the gap.

I have already written a post about this at https://www.thegrowingspace.com.au/ndis-plan-expiry/  You need to be a paid subscriber to read it though, but most people who are self or plan managed can claim that subscription on their plan.

Just quietly though, if you didn’t pay your plumber for a month, would she keep coming back to serve you? Providers are (often) human too, and we have bills to pay, staff to pay and children to feed too. We can’t keep serving people for no fee. Did you know that apparently the Tax Office (ATO) has a whole NDIS division set up just to support providers who can’t meet their BAS bills because of non-payment of NDIS services. ☹

And from another poster: “By law, they are not allowed to leave current participants without funding between plans. You have every right to ask for a plan extension and pro rata funding, until the new plan is activated. I have always done this through the finance officer at my local office – as they seem to get things done more effectively. If this does not occur, you should contact the Ombudsman. It is unreasonable for the NDIA to expect providers to cover the costs, when the funding is not guaranteed.”

Random Stuff

57. Why does it take so long to get an agency managed plan back to a self managed one when I requested self managed at the review?

Just because. Which is my way of saying who knows. It’s bizarre. I get some of these back in hours, and others take months. I don’t imagine to know how they prioritise this stuff, if indeed, they do prioritise. I’m sorry. In case you didn’t, make sure to make that request IN WRITING at your next planning meeting. Leave NOTHING to chance.

Sam Paior, The Growing Space

Copyright November 2018 – This post can’t be copied, or redistributed in any form without explicit permission from The Growing Space. This took me AGES and I don’t want it nicked.

Support Workers

June 28, 2017

FREE TO READ:Finding and Choosing Support Workers with your NDIS Funds (Part I)

A Support Worker is someone you pay to help you because of your disability related needs, a Carer is someone who is not paid – usually family or a close friend. It can be difficult to find good support workers that “click” with you and your needs, so here are some ideas or where to find potential workers, and interviewing tips, too.

How might you use your “Core” funds for a Support Worker?

• Helping with your personal care (toileting, feeding, showering, teeth cleaning, shaving)

• Moving around at home – transfers from bed or chair to wheelchair or toilet or shower etc

• Building your skills (cooking/making snacks, kicking a football, cleaning/tidying, getting dressed, washing dishes, using a computer, gardening)

• Helping you try new things or continue existing activities (hobbies, recreation, leisure, employment, sports, volunteering, making friends, learning new things)

• Helping you make friends and get out into your neighbourhood and into your local town or city

• Cleaning, yard-work, watering, filing, laundry, changing beds

• Cooking, light household duties, laundry etc

• Transportation – driving you around or going with you on public transport

• Indirectly providing families and carers time away from their caring role

Where might you find a support worker to hire yourself?

• Contact a university or TAFE student association, or a relevant faculty

• Ask your extended family and neighbours if they know anyone

• OSHC (out of School Hours Care) workers or SSO’s from a local school

• People from your faith community, or a club you’re already involved with

• Put a shareable post on Facebook, or other social media (be careful not to share too much information publicly!)

• Restaurant, fast food or supermarket workers

• Ask your therapists if they know anyone who might be interested

• www.HireUp.com.au and www.bettercaring.com.au are great places to look for potential workers

• Advertise on Gumtree, in your local paper, or through employment websites like www.seek.com.au

• Go to a Support Worker Provider – they may be an NFP or a for-profit company

Tips

• Make sure potential support workers have current State and National Police Clearances, First Aid Certificate and definitely check their references

• Be careful when advertising and interviewing strangers to make sure you don’t publicly share information which makes you or your family vulnerable – never include your home address or full name in an ad – you can meet interviewees for the first time at a library, coffee shop or other public place to keep safe.

Interview Question Ideas

• What is your experience with people with disability and/or children?

• What gave you an interest in working with people with disability?

• Do you have a disability or care for anyone in your family with disability?

• Do you have any studies/qualifications (related or otherwise, current or past)?

• Do you have your own reliable insured transport, licence and clean driving record?

• Are you OK with my pet cat/dog/bird in the house?

• What are your interests outside of work/study? Could you introduce any of these to me or my child?

• Have you had experience of (my child’s extra medical or behavioural support needs)?

• I/My child can sometimes get anxious/distressed. What would you do if he broke a window and was having a meltdown?

• Are you willing and able to provide personal care support (toileting etc), and can you do overnight help?

• Do you have any physical limitations that might make this job hard that I should know about?

• I/My child is very active – would you be fit enough to keep up?

• My child is not good about personal boundaries – would you comfortable with…?

• How would you communicate to us about your time with our child? (email/phone/text)

• What would you do if…?

• What is your availability and what notice do you require?

• How many hours of work are you looking for and are you willing to travel?

• Our cultural/belief background is… Do you share/are you comfortable supporting our beliefs?

General Tips on Choosing Support Workers to Meet Your Needs

• It is very very rare that any one support worker will have all of your desired qualities. Consider taking on two or three workers, even if you don’t have a lot of hours of work to offer – people do get sick, move on and go on holidays – don’t get caught short with just one worker.

• Younger student workers often have energy and enthusiasm, but may have limited availability, especially at exam or holiday time. They may also have upcoming student “placement” obligations for their study – ask about these!

• It is unlikely that your workers will work only for you – keep this in mind and try to book workers for regular shifts, and do this in as far advance as possible.

• Professional (full-time) support workers may have set ideas about the work you need and ways to do things, and may not be as flexible, but they may also have very valuable experience.

• Are you looking for community access – someone willing and able to get out and about with you or your child, or are you really looking for in-home support? These activities are not necessarily incompatible, but a young student may not have the domestic and life experience to just “notice” what needs doing and show that initiative (remember *your* first share house?).

• And one more thing – the NDIS will not fund parents or family members of participants to provide personal care supports except in the most exceptional circumstances (and even then, only for a short time), and there are many good reasons for this policy decision – it’s hard to fire Grandma or your sister!

Where to go for more information

Here’s a guide to recruiting and interviewing potential support workers from HireUp: https://hireup.com.au/wp-content/uploads/RecruitmentManualforUsers_July16.pdf

Here is some great Easy English information about how to choose staff from MyChoiceMatters: http://www.mychoicematters.org.au/index.php?option=com_content&view=category&layout=blog&id=9&Itemid=113

Ways to use NDIS Funding

February 13, 2015

FREE TO READ: Workshops and Parent Training

Do you go to workshops, conferences or seminars around your child’s disability? Are there particular ones that would help you help your child achieve their goals? You might consider asking NDIS for support for the fees to attend. If approved, you could ask for that line item to be self-managed, and that way the conference folk don’t need to be NDIS registered and you can pay them directly. Or, if you are self managed and your attendance at the workshop is a reasonable and necessary expense to help your child meet their goals, you could claim the fees from your Capacity Building or Core funding.

NDIS Reviews and Changes

November 9, 2017

FREE TO READ: NDIS NUTS & BOLTS TIPS: Annual Reviews – All about therapist reports

So, the end date of your plan is coming!

(this is a bit of a long read, sorry)

First, I suggest that you set a reminder, or write in your calendar, a full THREE MONTHS before your plan expires. This should give you enough time to get the reports you need.

Reports are NOT needed for most core supports most of the time – so don’t worry about asking your support workers or taxi drivers to write a review of how you’ve progressed towards your goals. I wish I was joking when I write this, but I have experienced a planner requesting a written report from a support worker who worked two hours a week for a participant. Just so you know, if they do ask, then I suggest you ask them for a specific, relevant and reasonable reason to provide reports from your support workers, and if they can’t, then I would not be providing those reports until I’d spoken to someone higher up the food chain.

So, reports, generally speaking, need to be organised by you, or your Nominee, or, if you’re lucky, your Support Coordinator, for each of the therapists you have funded with your NDIS plan over that plan year – this means your psychologist, occupational therapist, physiotherapist, speech therapist, behaviour support specialist etc. – any allied health professional you saw on a somewhat regular basis, who has worked to help you toward your NDIS goals.Some therapists will write their annual reports at no extra cost, but most will charge you, at least one hour (and some much more!), so be aware that this will eat into your therapy budget and you should be aware and plan for that when figuring out your services and budget. (And, if you’re smart, ask about their report writing charges and have it included before your sign their service agreement).

I’ve seen hundreds of NDIS therapist reports from dozens of therapists in the past four years, and not all are equal! I’ve seen parents cry when an NDIS planner has read a report in a planning meeting and said “This really doesn’t help me at all”.You don’t want to be that crying person.

So, here are four things that I’m pretty sure the NDIS want to know at review time for most participants…

1. FREQUENCY OF THERAPY – How many sessions were actually provided during the plan year.

2. PROGRESS MADE – This means baseline and ACTUAL PROGRESS/IMPROVEMENTS – this DOES NOT mean “We worked on core strength and fine motor control” – but it DOES mean “Jonny is now able to feed himself soft foods using an adapted spoon without support for around half of his mealtimes” or “Sarah has increased her spoken vocabulary from 20 to 100 intelligible words over the plan year” or “Louise can now successfully and safely catch a public bus home from her dance lessons every Saturday”. Some therapists do excellent reviews with pretty graphs tracking progress etc. This is easier with some kinds of therapy than others.

3. NEW GOALS – While you probably have a good handle on your broad goals, your therapists often have good ideas about smaller, bite size goals to work on – like “Jonny will be able to eat clear soup with a spoon with only minor spillage” or “Sarah’s intelligible spoken vocab will increase from 100 to 300 words over the coming year” or “Louise will learn how to order a taxi using her smart phone and to pay for it using her debit card and taxi voucher without getting ripped off by the driver”

4. EQUIPMENT NEEDED – This one is important, because if the type of equipment is requested in your planning meeting and approved in your plan (actual formal NDIS prescriptions and quotes are not required at this stage, but can expedite the process if you already know exactly what specific item is needed), then you won’t have to suffer through a full plan review when equipment is requested in between plans. And trust me on this one, you DON’T want a review mid plan unless you really have to (and you could have many more grey hairs before you actually get that review).

5. FUTURE THERAPY RECOMMENDATIONS – with justifications of why you need it. This means evidence as above showing the progress the therapy is already achieving, as well as evidence of why they think future therapy will help you meet your goals.If your therapist provides you a review report that does not cover these basics then it pretty much falls on you to let your therapist know you need a report that tells the NDIS what they need to know to justify funding further therapy.Of course, none of this guarantees that your NDIS planner or LAC will actually read or consider the reports, but they certainly should, and if you don’t get the therapy you need funded in your new plan, if you request a review, at least those reports will be in your file and should then be reviewed by the next planner who does your unscheduled review.Good luck!

As per usual, this post is based on our experience as Support Coordinators serving loads of people with NDIS plans. It is NOT direct personal advice and may not be right for your personal situation, so always check with the NDIS in case there’s been changes and stuff.

NDIS Q&A: Sam Translates

FREE TO READ: Posted on 17 November 2017

QUESTION: What is a participant’s statement of goals and aspirations?

NDIS: A participant’s statement of goals and aspirations should identify the personal goals, objectives and aspirations a participant would like to achieve in the future, with the help of the NDIS. The NDIA will adopt a strengths based approach in supporting a participant to identify their goals, objectives and aspirations. Strengths based approaches focus on untapped gifts, positive attributes and underdeveloped capabilities which can direct a participant’s future potential.

SAM TRANSLATES: In your NDIS Plan is a section called “My Goals” and these goals are the things you want to achieve in the short term over the life of your NDIS plan, as well as some longer term goals. The NDIS aims to help you reach your potential with their help, so think about what goals you need help with to make your life better.

QUESTION: Is there a way to confirm that forms and applications that have been sent in have been received and are being processed?

NDIS: We are implementing an auto-reply response for all information received by the National Access Team through the nat@ndis.gov.au email address. We anticipate that this will be available in the near future.

SAM TRANSLATES: No But all our fingers and toes are crossed that one day, hopefully soon, there will be an auto-responder to your email that confirms we got your stuff so that at least you have proof you submitted it when we lose it after that.

QUESTION: Our family has been waiting over 50 days to hear back from the NDIS over our application for assistance for our two children. Is this normal?

NDIS: The national roll out means we are receiving a high number of access requests from people wanting to become NDIS participants. We are working hard to respond to access requests in a timely manner and continuously improve our processes. After you have submitted a valid access request form, the NDIA’s Operational Guidelines state we must respond within 21 days. A valid access request form means you have provided all relevant information and evidence in your access request form and live in an area where the NDIS is available. Importantly for families of children 0-6 years, Early Childhood Partners, will provide initial supports for children and their families/carers and assist to access appropriate supports and services for the child.

SAM TRANSLATES: Yes. We’re so darn busy it’s ridiculous. We are working our guts out but we don’t have enough funding or staff to help you as quickly as we’d like. We’re supposed to give you an answer in 21 days. If we don’t manage this, it’s not always our fault. Sometimes it’s your fault. We only have to stick to that 21 day thing if you provide extraordinary details and reports and assessments if there could even be a skerrick of doubt that you’re not eligible. (Sam adds: Like the person who was recently denied access because it’s a bit iffy whether being born without any eyeballs is permanent. That was probably some admin error though, and like we said, we’re really busy, so mistakes will happen sometimes)

QUESTION: What kind of things can be purchased with the Assistive Technologies budget?

NDIS: Assistive Technology (AT) is a term that covers a wide range of things from large print labels to shower seats, wheelchairs and car modifications. The NDIS uses the definition of AT provided by the World Health Organisation: Assistive Technology is “any device or system that allows individuals to perform tasks they would otherwise be unable to do or increases the ease and safety with which tasks can be performed.” For example, a car is not considered Assistive Technology, but modifications to the car to enable a person with disability to drive it might be considered Assistive Technology. There is some detailed information about Assistive Technology on this page of our website.

SAM TRANSLATES: Assistive Technology is all the “stuff” that lets you do the things you want and need to do but have trouble with, because of your disability. Like wheelchairs, and eye-gaze systems, and flashing doorbells and car mods. There’s more info at https://www.ndis.gov.au/prov…/assistive-technology-faqs.html (The NDIS answer on this one is actually quite decent)

QUESTION: Who else has had an LAC review their PWD’s NDIS package? Should I be asking for a planner from NDIS to do the review? My son was not given supported co-ordination with his package and suddenly he has an LAC?

NDIS: Local Area Coordinators (LACs) are organisations who have partnered with the NDIA to deliver the NDIS. LACs have three key roles: • They will link you to the NDIS. For a majority of participants, LACs will work with you to develop your plan, help you implement and monitor how your plan is going, and review your progress regularly. • Link you to information and support in the community and mainstream services such as health and education, and • Work with their local community to make sure it is more welcoming and inclusive for people with disability. If you are in an area that was a Trial Site, a majority of participants will transition to work directly with LACs to review their plan. LACs will provide a single point of contact for NDIS participants and help you to develop, implement and get the most out of your plan. Planners are employed directly by the NDIA and have delegation to approve participant plans. They often work with people with increased complexities to develop their plan and they make informed decisions about supports with regards to NDIA legislation. Once a plan has been approved, a planner will refer back to an LAC or to a Support Coordinator (if this support is included in the plan) to help people start their plan. Find out more about LACs in your area on the NDIS website. Don’t worry if you can’t find a LAC near you yet. As the NDIS continues to roll out, more LACs will become available in communities across Australia.

SAM TRANSLATES: The government cut our funding and decided to outsource most of our planning and follow-up work to contractors, called “Local Area Co-ordinators” or LAC’s for short. They are supposed to help develop your plan, and send it off to an NDIS “Planner” who actually works for the government and makes the decisions on whether or not to approve all the bits of funding. The “Planner” is also called a “Delegate” which is another name for “Gets to decide your funding fate”. Then the LAC is supposed to help you understand and use your plan, but they often know less than you do which can make this quite difficult. If you’re *really* lucky, you’ll get funding for a Support Coordinator to help you with this stuff, but if you do, good luck finding one without a waitlist. Not everyone has their plan prepared by the LAC – some participants with very “intensive” needs may have their plan prepared and approved direct by an NDIS planner. Each area has their own contracted LAC “partner”, unless they don’t yet. But they will. Chill out dude.

QUESTION: Do Centrelink and NDIS use two different systems of diagnosis?

NDIS: NDIS funded plans are separate to any other support that people may receive from other government services such as the Disability Support Pension, Carers Allowance or Health Care Card. The only funded support that will change as a NDIS participant is the mobility allowance. NDIS plans are goal orientated, and will provide support to access and connect with other services that can help you to achieve better outcomes in life. In terms of providing evidence (medical or otherwise) to support an application for eligibility in the NDIS or a Centrelink program or service, whilst there is likely to be similarities, they operate differently and have separate criteria and separate application forms. For further information on eligibility criteria for the NDIS, go to the Accessing the NDIS page of the website (external link). For further information on eligibility criteria for supports and services provided by Centrelink, go to the Centrelink page of the Department of Human Services website (external link).

SAM TRANSLATES: Yes. Being on the Disability Support Pension does NOT mean you are eligible for the NDIS, and being on the NDIS does NOT mean you are eligible for the DSP. Their eligibility criteria is different, and less than half of people on the DSP will be eligible for the NDIS, so you will need to fill out different forms and meet different criteria for both if you need both. Luckily the NDIS forms are NOWHERE near as horrible as the Centrelink DSP monster forms which make little sense to most people and make nearly everyone cry. If you are on a Centrelink Payment or Allowance, two things will change – your Mobility Allowance from Centrelink will stop (but may well be replaced in your NDIS plan) and if you get the Continence Aids Payment Scheme (CAPS), it will also stop but your continence related needs and supplies should be appropriately funded in your NDIS plan. Here are some links to find out more about the different eligibility processes for DSP and NDIS. https://www.ndis.gov.au/people-dis…/access-requirements.html https://www.humanservices.gov.au/individuals/centrelink

NDIS Admin Tips

FREE TO READ: INFO: NDIS Plan Spending

October 29, 2017

According to the last NDIS Quarterly Reports Only 52% of NDIS Plan Budgets are actually spent in South Australia, and the number isn’t much higher interstate!

I have a few theories about why, including lack of support coordination, peer groups and LAC assistance, and a huge lack of participant training, support and advice on using the funds. That’s one of my “missions” if you like – to use this page to help people with disability and their nominees make the most of their funding to live good lives.

Last month, more than 120,000 people across Australia saw posts on The Growing Space. Thanks to you all for spreading the word and sharing the joy. 🙂

New NDIS Quarterly Reports will come out in just a few days. The info in these reports is fascinating and well worth a look, with much of the data presented in graphs, so you don’t have to be a whizz at numbers to understand.

Here’s the blurb from the NDIS website:

“Quarterly reports Each quarter the National Disability Insurance Agency (NDIA) prepares a report on its operations for the Council of Australian Governments (COAG) Disability Reform Council in accordance with section 174 of the National Disability Insurance Scheme Act 2013. These reports are known as quarterly reports.

The quarterly reports provide the COAG Disability Reform Council with information (including statistics) about participants in each jurisdiction and the funding or provision of supports by the NDIA in each jurisdiction. The NDIA provides these reports to COAG at the of the month following the end of each quarter by 31 January, 30 April, 31 July and 31 October”

https://www.ndis.gov.au/…/information-pub…/quarterly-reports

Finding and Choosing Supports

FREE TO READ: Choosing a Therapist for your Child: Ten things to think about, talk about and ask!

October 22, 2016

1. What is your therapist’s experience and specialty interest? Ask your potential therapists how long ago they graduated, check that they are registered with the appropriate body (more info at https://www.ahpra.gov.au/) and what they’re really good at. A speechie may have graduated twenty years ago, but if they’ve only worked in aged care until this year, they may or may not be a good fit for your child. And a recently graduated OT may not have the skills to support your child’s behaviour needs, but maybe they have a senior therapist supporting them well? Ask questions!

2. Where does your therapist work? Therapists can work from a clinic base, in your home, at the playground, or in school. Purely clinic based work may not give your therapist a good idea of the challenges you have at home, and often children’s behaviour and needs are quite different in different places. If you have other kids, it might be really valuable for your therapists to see that interaction at home, and it might save you some stress getting the kids off to appointments. Some schools in SA are no longer allowing therapists in to work with children, so check with your school. And if your therapist can work with your child at school, do they pull them out of the classroom, or work with the teacher to make sure their work carries on for the rest of the week!

3. How does the therapist communicate with you? Does your therapist give you written “homework” after each visit, and is this useful for you or does it just sit on the fridge? What is the best way to share information with *you* and is the therapist willing to do that? There’s not a lot of point in a speechie visiting your child at school for a session every fortnight if you don’t know how to reinforce and carry on the work for the rest of time!

4. What does your therapist charge? Ask you therapist what their charges are – do they work with your child for a full hour, or 30 or 45 minutes? Do they charge travel time? Do they charge mileage costs? What are their charges for reports and assessments and is that included in the regular visit fee or is it extra? Also ask if they require up-front payment if you are Plan or Self managed. Here’s some information on provider travel for Agency managed NDIS plans: https://www.ndis.gov.au/provider-travel-information

5. How long is their waiting list? Many therapists have waiting lists – ask how long it’s likely to be for your therapist of choice. The waiting list may be short if they’ve just hired a new therapist to add to the team, but make sure you check out if their new therapist has the skills (or are well supported by seniors) and personality that you feel will work well with your child – don’t just go by the “brand” of the company or organisation.

6. What extra qualifications do they have? Some therapists have extra qualifications and actively engage in ongoing professional development, and are members of professional associations – I know a few OT’s who are also qualified in Circle of Security, and a Counsellor who is also an art therapist, and some psychologists qualified in equine therapy. You might even find a physio with training in Feldenkrais, so do ask! You might want to ask whether they have regular supervision or peer support.

7. What intensity and frequency of service is best for your child? Sometimes a short burst of frequent intensive therapy and practising time can do more to help reach a child’s goals than a regular fortnightly slog, but sometimes children need that regular consistency and slow relationship building. Ask your therapist how they work, and whether they (with you!) have any capacity for an intensive burst – these can be especially helpful during school holidays etc, so if you are working parents, you might have an opportunity to be more involved in your child’s work.

8. What is your therapist’s “exit strategy”? The ultimate goal of therapy (and parenting!) is to do themselves out of job! Talk to your therapists about how they measure progress, and at what point they think they may no longer be needed, or maybe only needed on an occasional consultative basis. I don’t know about you, but I certainly don’t think I’d like to have therapy three times a week for the rest of my life!

9. What is their approach to treatment and teamwork? I see too many children trot off to their individual therapy sessions each fortnight or week, with very little, if any, interaction between therapists. Yes, it *is* really important for your speechie and OT and counsellor and psychologist and physio etc to connect, and it might be up to you (or your support coordinator if you have one) to demand (and set up) those meetings, even if it is a bit like herding budgerigars! You might want to check if your therapist is OK with this. Have a think about group work too – children can learn an awful lot from being together, and so do parents – maybe a mix of group and 1:1 will help your child meet their goals much better than 1:1 only! If your therapist doesn’t do group work, can they point you in the direction of others who do? Also ask about their theoretical approach to treatment – this is especially important when seeking a psychologist’s support. There are many quality evidence based practises, and your psychologist should be able to explain some of these to you, and provide evidence of how well they work so you can make an informed choice.

10. Will the therapist help train your support workers? Chances are that for many children (and certainly adults), their support workers and parents will spend more time with the person with disability than the therapist. Is your therapist willing to work with your support workers to develop an individual program to build on therapy work outside of therapy visit hours? Can a physio give suggestions and support on how to encourage and practice skills at a playground, or in the back yard? I often suggest that the babysitter, grandma, or a support worker come to therapy sessions with parents and child to learn how to continue the good work.

Don’t forget, a therapist who works with your child one hour a fortnight is only with them .6% of their awake life. The other 99.4% of your child’s waking hours are with you!

And remember – with NDIS you *can* change your therapists!

NDIS Planning

October 9, 2017

FREE TO READ: Little NDIS Tip for your Planning Meeting

When you have your NDIS planning meeting, or your review meeting, write down on a piece of paper your chosen method of money management for your plan and hand it in writing to your planner – this will hopefully reduce the significant number of planner/LAC errors in setting up the money management for people with disability and their carers.

I request Self Management please.

or I request Plan Management please.

or I request Agency Management please.

Maybe even take a photo of this piece of paper in the LAC’s hands, or a selfie with you handing it over? Though that may sound a little cheeky/obnoxious, I’ve seen so many plans come back with money management not as requested and LAC/planner denying the request was made…

August 14, 2017

FREE TO READ:Top Ten NDIS Pre-Planning Tips –Sam Paior Sunday Mail, 14 August, 2017 pg2-3 of NDIS liftout

1. Keep a log or journal of your disability related needs over a week – write down everything you do or spend that you would not do or spend if you were not disabled. Give a copy to your NDIS or LAC Planner at your planning meeting.

2. Bring a copy of any recent reports or assessments from allied health professionals to your planning meeting, but don’t worry if you don’t have any – there’s no need to go and pay for extra reports before your planning meeting.

3. You generally don’t need guardianship or administration orders if an NDIS participant chooses someone to be their nominee. The NDIS recognises natural relationships with rare exceptions.

4. Think about goals that expand your world – try a new sport, join a new group, think about getting a job or starting a business, or moving out of home. Have two goals for the next year, and one or two longer term goals to include in your plan.

5. Decide how you want to manage the money in your plan before your planning meeting – Agency Managed – less hassle but less choice, Self-Managed – more hassle but more choice, and Plan Managed – less hassle and more choice. Plan Management can’t be denied to any participant/nominee who asks for it and the funds for it are on top of your regular plan funds.

6. Have a think whether you need or want someone to help you manage your NDIS plan – a parent, sibling or unpaid carer you trust. Ask them before your meeting if they are happy to be your nominee.

7. Your planning meeting can be done by phone, at the NDIS/LAC offices, out in the community, or in your home. Let your planner know what works best for you.

8. Join a peer support group, or join a peer community online (there are a lot of great groups on Facebook) to find out more about the NDIS.

9. At the start of your planning meeting (or sometimes before, on the phone) you will be asked a bunch of questions designed to figure out your levels of disability related needs. Make sure you concentrate and answer thoughtfully. These questions are a big part of what decides your funding levels.

10. Write up two weekly calendars – one of your activities and how your life looks now, and one of how you would like it to look if you had the funding you need. Give a copy of each to your planner.

Health and Behaviour

FREE TO READ: What are Positive Behaviour Supports – PBS?

August 18, 2016

I think these terms get thrown around a fair bit without a really strong understanding of what they actually mean. I’m guilty of this myself, but since working with a bunch of families and children facing some pretty gnarly behavioural challenges, I’m learning more everyday.

So, in layman’s terms, what is PBS? It’s a multi step process that starts with an evidence based (we have lots to prove it works) way of collecting and analysing information for each individual, about the reasons and triggers for their behaviours, and what the person is communicating through the behaviour. Once that info is collected and understood, PBS works to help that person to find less damaging ways to express themselves, and alternative ways to communicate needs and frustrations.

It also works hard to improve the life of the person, because often lousy behaviours are a way to say “I’m bored” or “I don’t like this activity” without using words (All behaviour is communication!!).

A PBS plan will give concrete ideas and ways to prevent, reduce and respond to specific and general challenging behaviours across all areas of life, and if it’s used consistently – at home, school, respite etc etc., it can make a HUGE difference in the person’s quality of life.

PBS doesn’t happen overnight. It can be a long, hard (and not cheap) slog for everyone – especially for the person with challenging behaviour, but the results will be much longer lasting and far more worthwhile than the older punishment based ways of managing behaviour.

NDIS funds can be used to develop a PBS Plan and implementation.

Here’s an awesome little six minute video from BILD UK that explains it better than I just did! Enjoy!

https://youtu.be/epjud2Of610

INFO: Calm in Crisis

B1 - Behaviour Calm in Crisis Kluth TGS

Adapted from: P. Kluth (2010).

“You’re Going to Love This Kid!”: Teaching Students with Autism in the Inclusive Classroom (Rev ed.). Baltimore: Brookes.

This article is from the website of Dr. Paula Kluth. It, along with many others on inclusive schooling, differentiated instruction, and literacy can be found at www.PaulaKluth.com. Visit now to read her Tip of the Day, read dozens of free articles, and learn more about supporting diverse learners in K-12 classrooms.

I walked into a fifth-grade classroom and saw a student with autism sprawled out on the floor. The classroom paraprofessional was standing over the boy, warning him, “Get up now or you won’t get computer time.” The boy began crying and then biting his hand. The paraprofessional’s voice became louder and more stern, “Get up now. Time to make a choice. You can choose to stand up or you can choose to lose your privileges.” This was a hard scene to watch; the situation was difficult to begin with but was made more challenging by the actions of the adult. Her words, tone, and posture drew more attention than was necessary to the child; did nothing to calm the young man; and undoubtedly, made the situation more problematic, not less.

Contrast this with another scene. Recently I was visiting a friend at the preschool where she teaches. As I walked in the front door I immediately heard the piercing wail of a young child. I couldn’t yet see the child, but any teacher or parent hearing this wailing would recognize it as “the real thing”. In other words, these screams did not belong to a child who was merely tired or cranky. These sounds belonged to a distressed, scared, frightened, angry, or otherwise wounded child. I listened for the teacher’s voice. Was the child being punished? Was someone scolding him? Was he even with a teacher? I began to walk faster.

As I rounded the corner, I saw a boy screaming and kicking on the floor. A teacher stood next to him, talking to him softly. I immediately understood why I didn’t hear her voice amidst the screams; she was talking to him but she was whispering. I stood watching them from a distance, touched by this gifted teacher’s poise and grace. The boy’s sobs subsided as she gave him a short hug, stroked his back, and continued whispering to him. She had a compassionate look on her face and her body communicated acceptance.

After about three or four minutes the child was calm and the two stood and walked back into a classroom. For the rest of the day I thought about how calmly and gently she had treated his crisis.

______________

Consider the last time you lost your temper. Did you yell? Scream? Cry? Did you say things you would later regret? How did you feel when you were engaged in these behaviours? Embarrassed? Furious? Lonely? When most of us are in this type of crisis we need gentle support to calm down. We may need to take a short walk, curl up with a favourite book, find a place to be alone, or call someone who will listen as we share our struggles. In other words, we need support, understanding, and time to gather our thoughts. Students with disabilities certainly deserve the same attention and care that we might give ourselves.

This also means that an individual experiencing stress will most likely not be helped by approaches that are aggressive or lack sensitivity such as:

• Loud voices; Negative statements or threats (e.g., “You had your chance”, “You made your choice, now you need to leave class”);
• Taking away preferred or comforting materials or activities;
• Physical redirection;
• Angry tone or body language; and
• Punishments (e.g., “You just lost a sticker on your behaviour chart”).

One of the most important skills a teacher can have is the ability to be calm and comforting in a crisis or “meltdown” situation. A comforting teacher may hug or hold a student or she may simply share encouraging words. Being comforting might also include touching the student’s hand, arm, or back in a reassuring way, asking them how they want to be helped, singing a favourite song, repeating a calming phrase, or simply keeping one’s own body relaxed.

Some teachers insist that it is best to be firm so that students “don’t get away with” behaving in a way that is seen as negative or disruptive. This punitive approach almost always serves to distance the teacher from the student and certainly fails to strengthen their relationship. It is ironic but true that the more a teacher may try to control a situation, the more out of control that situation may become.

In contrast, adopting a cooperative and compassionate orientation can help avert crisis or at least help to deescalate a difficult moment. While a student experiencing challenging behaviours might need to know how the behaviour is being interpreted or might benefit from information or teaching related to the behaviour, it is seldom (if ever) appropriate or useful to intervene in these ways while the behaviour is taking place.

When a student is kicking, biting, banging her head, or screaming, she is most likely miserable, confused, or scared. The most effective and the most human response at this point is to offer support; to act in a comforting manner, and to help the person relax and feel safe. Teaching can come later. In crisis, educators must listen, support, and simply be there.

Education and Schooling

FREE TO READ: TIP: A letter to my child’s teacher for the new School Year

January 13, 2016

A Letter to my teacher

Schools love getting these letters about our kids at the beginning of the school year! Here’s a draft for you to cut and paste and edit as you like.

It’s just a starting point, but might give you some ideas!

Dear Mr/Mrs XXX,

I am xxxx’s Mum who will be in your class this year and I’m looking forward to working with you this year. I thought I’d give you a brief outline of who xxx is, and some info that might help you have an awesome year together.

1. Stuff I’m *really* into:

2. Things that really motivate me/ and ways to get me to be engaged/involved:

3. Stuff that scares me:

4. About my stamina:

5. Stuff I’m really good at:

6. Areas I’d most like to improve:

7. Interesting quirks of mine – sensory issues etc:

8. Health issues you should know about and how they affect xxx at school:

9. How to read/prevent/manage a meltdown:

10. Ideas for minimising behaviours that aren’t helpful at school:

11. A bit about my family, pets etc, and what we did in the holidays:

12. Other professionals in my life you may wish (and have my permission) to contact at some stage include:

What to expect from me: I am a pretty involved parent. I like to know what’s going on at school, but I don’t want to interfere with your job. I want you to know I am available by phone/email/text/carrier pigeon and hope and expect to be contacted with your queries, and absolutely as soon as anything looks like it might be hitting the fan. If you would like support from a therapist (OT/Speech etc) please let me know and I will do my best to make it happen.

What I would love from you: The sooner I know about any behavioural issues that are emerging, the better I can support you and we can be on the same page at home and school. I can support you by following through and using the same language and agreed consequences (including rewards) to help xxx make the most from school and friends.

Do you prefer email, phone, or a drop in before/after school to stay in touch? I’d also like to set up a face-to-face meeting half way through first term so we can check in, and one each term after that.

Can I also ask you to keep an eye out for which other kids in the class my kiddo is making a connection with, as I’d like to setup some playdates etc., but it’s hard for me to know which relationships might be good to encourage.

Thank you in advance for your work this year. I know that xxxx will need more of your time and energy than some of the other kids, but I want you to know I am grateful and my guess and hope is that you and xxx will grow and learn together this year, as well as have great fun!

Many thanks, Xxxxxxx

My email address is:

My Phone number is: