http://www.thegrowingspace.com.au/wp-content/uploads/2017/10/ND8-Plan-Management-Table-Oct-2017-TGS.pdf

(please remember, that as a table, not all information can be included – there are exceptions to most rules and the info in here is no exception!)

You might also want to print up this info sheet, which goes into more detail about the pros and cons.

http://www.thegrowingspace.com.au/wp-content/uploads/2016/08/NDIS-Nuts-Bolts-3-Money.pdf

These guides are copyright The Growing Space 2017, but you are welcome to share them as they are, with credit, and no edits. These are for general informational purposes only and are not individual advice. This info might change at the drop of a hat, so always check with the NDIS for any changes. www.TheGrowingSpace.com.au

There has been alot of information flying around about the need for Guardianship under the NDIS.

There’s some really good info in the attached .pdf file from the SA Office of the Public Advocate, but in a nutshell, for MOST adults with disability with reduced decision making capacity, with responsible family carers working in the best interests of, and with a person with disability, the NDIS does not require a Guardianship to allow a carer (usually parent, often sibling) Nominee status under the NDIS.

Here’s a link to their info flyer: 30 OPA, Guardianship Orders and the NDIS

I’ve learned (somehwat) to:

BE OPEN: A good provider for one person might be shit for another person, and vice versa. Take in what you hear about providers, but make your own judgements. It’s not wise to judge a while organisation on one or two shit support workers – shitty support workers slip through and are employed by EVERY organisation at some stage or another.

BE ASSERTIVE: When a provider tells you information, or sends you a bill that seems dodgy, it may well be dodgy. Ask for a supervisor and check with the NDIS directly. Even if your plan is Agency Managed you should be getting detailed accounts of how providers are claiming your funds every month at least. NDIA rules require that they do this, so demand it. Estimates are that 18% of billing in the NDIS is incorrect. Don’t let that be your funds wasted. Demand a copy!

BE SMART: Keep a copy and almost memorise the “reasonable and necessary” provisions of the NDIS Act. If you are self managing, don’t annoy the NDIS to ask every little thing. If it meets “reasonable and necessary” under the Act for your participant, then just keep your evidence and do it.
https://www.ndis.gov.au/p…/reasonable-and-necessary-supports

BE COPYFUL: *Never* give your only copy of *any* document to a government or provider. Ever. Always make a copy to keep for your own files. If you live near an NDIS office and are able to get there, drop off documents and ask for a receipt. Uploading documents to the NDIS through the portal does store them, but it is doubtful whether anyone at the NDIS is actually notified that the documents have been uploaded. So think of that as a “storage” facility, rather than one that sends documents *to* people at the NDIS.So upload the docs, but then send an email to the NDIS to let them know you’ve done it. Oh, and repeat your subject line in the body of your email, because the subject line, I’ve been told, gets cut off when they save your email to your file. (and yes, I know “copyful” is not a word, but I don’t care. It works for me)

BE FLEXIBLE: The NDIS is consistently inconsistent. Providers and planners and LAC’s frequently have incorrect and/or outdated information. They do not have all the answers. And neither does the NDIS. Things change rapidly in the NDIS, and you kinda just have to learn to “go with the flow”, or you might explode.

BE PREPARED: If you have a school aged child in the NDIS and have not had your annual review recently, you are likely to find that your funding will drop at your next review. Significantly. Many school aged children’s plans are dropping by 30-60% with Core Supports almost disappearing for many.

BE CAREFUL: If you are using your nine year old child’s core funds to clean your gutters and prune your roses, you will want to have strong evidence of why this is reasonable and necessary as a disability support. Audits ARE happening, so make sure your spending choices are “reasonable and necessary” (see BE SMART)

BE A NIGHT OWL: Call the NDIS between 6 and 11pm on weekdays to ask basic questions or leave messages. 1800 800 110. You can’t usually get through to your local office during the day anyway, so you might as well call when there’s no hold time and the night-time call centre folk have, in my experience, been just lovely to talk to!

BE TOLERANT: The NDIA is pretty badly under-resourced in terms of staffing, which is why it’s almost impossible to get through to anyone in your local office, and one of the reasons why reviews are taking sooooooo long. It’s important to remember that this is NOT the fault of local NDIS staff and generally speaking, they really want to help, and they want the scheme to be successful, so don’t yell at them. feedback@ndis.gov.au is a great place to send your suggestions and complaints.

BE THANKFUL: For the vast majority of Australians with significant disability, the NDIS *is* better than previous systems. While many are having lousy experiences, this is not the overall reality for most. Those getting it rough have good reasons to complain, and we need them to complain to make things better, but for the rest of us, please consider sending positive feedback to your planner, a letter of thanks to the local paper or your MP.

Your mileage will vary, of course.

DISCLAIMER: None of this is “professional advice” yada yada, they are just my musings. If you want to share or reproduce this, go for it, but, as always, with Credit and no Edits. Copyright 2017 – Sam Paior, The Growing Space.

(pic desc: simple serif typeface black on white background in big type that says “What I’ve learned”)

Disability Advocacy in SA

(for a  pretty .pdf version, click here:Disability NDIS Advocacy and Media April 2017)

Government Funded (Free) Advocacy Organisations

If you are looking for free Advocacy support, please contact one of these government funded agencies http://www.dana.org.au/home/advocacy-groups/sa/

For NDIS Reviews and Appeals related support, SA’s independent free advocacy service is Brain Injury Network South Australia – http://braininjurysa.org.au/support-and-services/external-merits-review-support-service/ or Ph 08 8217 7600 or 1300 733 049

Other Advocacy information around NDIS

The Advokit website has been developed by Disability Advocacy Network Australia Limited (DANA) to support advocacy for people with disabilities in connection with the NDIS – http://www.advokit.org.au

NDIS review and appeals flow chart from Disability Advocacy Resource Unit –  http://www.daru.org.au/resource/national-disability-insurance-scheme-ndis-review-and-appeals-flow-chart

Contact your Members of Parliament

The Hon Leesa Vlahos – Minister for Disabilities for SA – minister.vlahos@sa.gov.au and her Advisor, Anna Bartsch: anna.bartsch@sa.gov.au Ph: 08 8303 2926

The Hon Kelly Vincent MLC – representing the Dignity for Disability Party in SA – vincent.office@parliament.sa.gov.au  or call 08 8237 9543

The Hon Jane Prentice, Federal Assistant Minister for Disability Services – minister@dss.gov.au  Ph: 07 3378 1599 jane.prentice.mp@aph.gov.au

To find your Local SA Member of Parliament’s contact details – https://www.parliament.sa.gov.au/Members/Pages/List%20of%20All%20Members.aspx

To find your Local Federal Member of Parliament’s contact details – http://www.aph.gov.au/Senators_and_Members/Members

Media

This link gives a list of media you may wish to contact (current September 2016) – http://www.thegrowingspace.com.au/wp-content/uploads/2016/11/sa_mediacontacts.xlsx
This media list is current as of November 2016, but please be aware that contacts can change quickly

Could it be any more confusing? Let me try and explain.

(and here’s a downloadable .pdf of this page)

1. New Plan or Annual Review doesn’t have what you need?
   Review of a Reviewable Decision -> Internal Review

When the NDIA make a decision, such as your new plan, or whether you are eligible, or all sort of other decisions, you have three months from the date of your plan, or “decision”, to provide further information or challenge them to reconsider. This is called a “Review of a Reviewable Decision”, and there are a whole bunch of reasons your might ask for this kind of review. You do NOT need to have a change of circumstance to ask the Agency to reconsider. The Agency doesn’t have a deadline on when they have to give you their response, but you can (and should) use the Plan you have in the meantime.
Your can request this sort of review by phone, letter or email. There is a form you can use, but you don’t have to. For more info: https://www.ndis.gov.au/participants/reasonable-and-necessary-supports/decision-review/application-review-reviewable-decision.html

2. My son just started having major seizures and now can’t walk
   Change of Circumstances -> Internal Review

This can be used when shit hits the fan during the middle of your plan, and the current funding just won’t cut it. If you’ve just been made homeless, been incarcerated (in detention/jail), have added another disability (not just a new diagnosis or label, but an actual change in how you are affected) or some other major life change has hit you hard, then you can ask for a review of your plan based on your “Change in Circumstance”. Sometimes Changes of Circumstances are good, too – like maybe you just got a job and need your transport money increased.
A “Change of Circumstance” form and further information can be found at https://www.ndis.gov.au/participants/understanding-your-plan-and-supports/change-circumstances.html

3. I don’t like the NDIS’ Internal Review Decision and want to Appeal
   External Merit Review –> Administrative Appeals Tribunal

If you think an internal review is wrong, you can apply to the Administrative Appeals Tribunal (AAT) to do an external merits review—an independent assessment of an NDIA decision. You can appeal your eligibility, or what’s in the your NDIS Plan but only AFTER the NDIS has done an internal review. At this stage of the process, there is free support through funded advocates to help you through the AAT process. In SA, www.BrainInjurySA.org.au is who can help. Check out http://bit.ly/2l8Pj02 for more info.

Sam Paior – Sam is solo Mum to teenage boys, one with intellectual disability. She wears many hats as a former Parliamentary Advisor, Public Speaker, Access Consultant, Advocate and Inclusion Supporter for a decade, as well as founding The Growing Space in 2007 and working with families as Support Coordinator through the NDIS since its launch. Sam has a special interest in working with families who are interested in, and/or struggling with inclusive schooling for their children with disability.

Monika Dobek – Monika has two primary aged children, one of whom who lives with autism and uses a communication device at her inclusive primary school. Monika has a background in international relations, with a focus on Asia, and has worked as an SSO in the DECD system. She has a very deep commitment to inclusive education, human rights and supporting families to make the most of their NDIS funds for their children.

Sarah does our admin, and she’s just super fabulous, as are our volunteers Tina, Angus and Lily.

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

1. What is your therapist’s experience and speciality?

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?

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 and child a good idea of the challenges you have at home, and often children’s behaviour and needs is 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!

This is general information and some suggestions, not professional advice.
And it’s copyright, 2016, but feel free to share in its original form, with full credit, and no edits. Thanks!

Top Ten “What’s Reasonable?”

Here are The Growing Space’s Top Ten reasonable expectations/requests for parents to ask secondary schools for their included children with autism, learning or intellectual disability.

1. A copy of their child’s timetable, including lesson times and room numbers, updated each term/semester.

2. A list of the teachers’ names for each subject, along with their email addresses in the first week.

3. A copy of the child’s behaviour plan/tools AND a copy of their child’s NEP/IEP in the first month.

4. A written/visual agreement reached mutually between the student, school and parents about behaviour and homework expectations and consequences in the first month.

5. A list (and photos if at all possible) of the names of each student in their homeclass in the first few weeks of school (first name and last initial fine if there are privacy concerns)

6. A list of modifications that the student needs so they can access the curriculum in the first month.

7. A meeting scheduled in advance for each term with the learning support/special education team for updates.

8. Notices regarding events and excursions and associated workbooks well in advance, sent home via email (if the student has trouble with excursions or is likely to not get the forms to parents). This includes notice of casual days!

9. That parents will be notified *on the same day* of significant incidents (negative and positive) around their child’s behaviour.

10. That Sport, Music and other extracurricular activities notices and events are specifically offered to their student. That parents are notified independently of these opportunities and that these departments *actively encourage* and have an expectation that students with disability will belong to the extra-curricular life of the school. This includes volunteering and social opportunities.

Schools and parents need to help each other – good communication can only work to the advantage of the student! Parents and schools want students to succeed, and the must give each other the communication and tools to reinforce and support each other.

These are just starting and discussion points, and is not a comprehensive list. These Tips are copyright and not to be reproduced without permission from The Growing Space.