This is the fourth post  in our confusion-clearing and myth-busting series about the NDIS. Thank you to everyone who’s provided feedback so far – keep it coming!

Here is another myth that has come through to us: People are being told that, if they choose self-management, they have to employ all their workers. Comments are also being made to people that make self-management seem the same as becoming an employer. Again, the implication here is that self-management is really hard work .

This is incorrect.

Yes, self-management offers flexibility in your funding to employ support workers yourself if that’s what you want to do. No, you don’t have to employ support workers yourself if that’s not what you want to do.

We’ve previously written about the practical benefits and current NDIS-related issues with self-managing your NDIS funds. In addition, you can also view information about self-management under the ‘Self-managing budgets in my NDIS plan’ module*.

Sometimes links to areas on the NDIA website don’t work as they should; the 404 error periodically appears when accessing information. If you’re having difficulty reaching any NDIA links we’ve posted in any of our blogs, please let us know. We’ve also contacted the NDIA about this, and we’ll let you know what’s going on when we find out.

Regarding self-management, every worker needs to be legally employed in Australia; they will either be employed by a service provider/you, or they will be self-employed.

There are three ways you can get the support staff you need, and we’ve added another. You’ll also find that the NDIA itself has published information about this, and we’ll point you in that direction as we go.

1)    Employ people yourself (also known as “Direct Employment”)

If you choose this option, you do employ support workers yourself. This means you become an employer – which means you have some legal responsibilities.

Some good places to start looking for information about this are Pearl Staffing Options and My Place.

More information about direct employment from the NDIA can be found at ‘Directly engaging my own staff’. ‘Mind the Gap: Disability Matters’ have also put out a great info sheet about direct employment that breaks the process down into manageable chunks, and explains each step of the direct employment process.

There are benefits to employing people yourself that make this option attractive to many people. One of the benefits is that you could make more savings between the rate that the NDIA pays, and the rate you pay your workers. This is because you don’t have to deal with ‘middle people’ – not because you pay workers less. These savings can mean that more direct support hours are available to you, or you possibly even have the option of hiring someone at a higher rate to do admin tasks (rostering, communicating with staff, organising team meetings, etc). This is just one of the ways that self-management (and plan-management, for that matter) offers more flexibility.

If you have Support Coordination funded in you NDIS Plan, you could also ask them to help you research information, and to link you in with people who have successfully self-managed their own NDIS funding. Alternatively, you may just want to learn more about this option to consider for your future NDIS plans.

InCharge has assisted people whose only experience of support workers was ‘being sent respite workers’ from a local agency. These people have subsequently explored, and taken up, direct employment of their own support staff. This is because we were able to support people through the process by moving through all the available options together, exploring the pros and cons of each, and then linking people in with information and resources.

What we can tell you is that if you do choose direct employment, although it can be daunting at the start, it is easy to maintain once you’ve got it up and going. But if you still don’t want to employ support workers directly, there are other ways you can self-manage your NDIS funds:

2)    Using support workers who are self-employed (also known as ‘independent contractors’)

The NDIA have summed this one up perfectly:

“A contract support worker operates similarly to most gardeners, cleaners and tradespeople, and has their own ABN and insurance and will provide you with an invoice to be paid.”

What you see here are examples of workers who supply their services to more than one client – or have started a small business because they intend to supply services to a number of clients.

When contracting support workers, there are important considerations to take into account. It’s not always straightforward whether a worker is an employee or contractor – just because they have an ABN and charge by the hour, this doesn’t necessarily make them a contractor. The Australian Tax Office (ATO) has a great video and easy questionnaire that can help you work out (a) whether your worker is an employee or contractor, and (b) the legal and financial implications of both of these. Pearl Staffing Options QLD also provides some good information around the difference between employees and contractors.

If there’s anything you’re unsure about, it’s best to contact the ATO directly.

Using independent contractors can be a great option as well: The contractor might advertise their fees, and you can decide whether you think these fees are reasonable. Some contractors might be willing to negotiate their fees, and they won’t necessarily charge higher on weekends or of a nighttime.

One of the reasons people choose this option is because, like direct employment, there is no ‘middle person/organisation’ between you and the support worker – which means that you can potentially make savings on your funding with this option as well.

3)    Through a support provider of your choice

Of course, you may still be able to find support workers through a service provider who has support workers ‘on their books’. In this case, the service provider is their employer.

The NDIA has said that:

“You can use any service provider you want to use. If a service provider or agency you want to use is registered with the NDIA, you can still self-manage your NDIS Budget and use their services.

In this instance, the registered service provider will provide you with an invoice to be paid rather than accessing your funds directly through the NDIS Portal.”

As with each option, this option has its pros and cons. The obvious advantage is that the support provider would take care of all the legal responsibilities of employment. In addition, they may also have a ready pool of support workers – and some providers may also be okay with employing people you find.

There are also new kinds of providers that also promote peer to peer connection.

The cons of this option are that, under the NDIS, the provider might claim the full NDIS payment rate from your NDIS Plan. This may mean you don’t make the savings we mentioned in the first two options that might enable you to get more support hours, etc. This may or may not be important to you. The provider may also have rules around using their workers – even ones you find – so it’s important that you have and understand a service agreement with said provider.

Finally, we wanted to touch on some of the new, online ways people are finding their support workers.

4)    Connecting, searching and finding support workers online

Our fourth option is really to help you to understand some of the new, online platforms being developed. You can use any of these platforms when you self-manage your NDIS funds. New online platforms give you a pool of potential workers to look at and engage with, and these workers can be employed in the ways we’ve talked about in this post.

Newer online organisations such as HireUp (an employer) and Better Caring (a platform that connects you with self-employed workers) are essentially the Gumtree of disability services: People with disability and support workers can sign up, provide their details and effectively cut out the ‘middle man’ when choosing their own staff.

These are by no means the only choices. A quick online search comes up with other options as well, and we always encourage people to research and decide on what is a right fit for them.

There are also state-specific as well as national Facebook groups set up and run by peers for the same purpose, such as Australian People with Disabilities and Support Workers Connections and WA Families and Disability Support Workers Network.

Online organisations give people the flexibility of choosing their own staff while the organisation provides administrative support; whereas peer-run groups give people the opportunity to meet and hire people at a grassroots level. There are also groups of people who get together to share information about how and where to find good support – this is called Peer Support to Buy Support. Two organisations we’re aware of are VALID (Victoria) and CDAH (Newcastle, NSW). Again, we encourage you to do your own research and make the best decision for you.

SUMMARY: You can employ all your support workers yourself, but you don’t have to. There are three ways the NDIA suggests you can find staff, and we’ve suggested an extra way. You might also want a mix of employees and contractors.

What all this means is that, when you self-manage your funds, there are many ways you can get support while maximising your freedom.

This blog post has come about after receiving this question via the InCharge website:

‘I’m just wondering if we go with an agency to manage the funding for our plan for the first year, will it be possible to change agencies or even decide to self manage after that initial year? Will the NDIA policy allow us to do that or do we have to stay with the same agency indefinitely and never be able to self manage after being locked into one agency.’

We figured that many people would have the same, or similar, questions. So here’s our response.

First of all, it’s important to know that when we talk about ‘Agency’ and ‘Agency Managed’, we are referring to the National Disability Insurance Agency (NDIA).

‘Service providers’ are the professionals that the ‘Agency’ will manage payments for.

There are four ways you can manage your NDIS funds:

• Self-management (you pay service providers with your NDIS funds)
• Plan-management (a plan manager pays service providers with your NDIS funds)
• Agency-management (the NDIA pays service providers with your NDIS funds)
• A combination of these options (you pay some service providers for some things, and/or a plan manager and/or the NDIA pays other service providers for other things.)

If you choose to have the NDIA manage your funds in the first year, you can absolutely change in the second year – and after that as well. During the first year of your plan, you can use your funds to engage any registered service providers* you wish, and you can also switch to use other registered service providers if you want to. Sometimes they might request notice of this, and so you should check their service agreement thoroughly.

*A registered service provider is registered with the NDIA to provide services for NDIS participants.

If you want to try self-management, we suggest a couple of things:

• You could try self-managing a small or manageable part of your plan in the first year, in order to gain experience so that you can potentially self-manage more of your plan in the second year. You can also ask for some assistance to learn how to do it; you might be provided with some hours for training and support, so that you can engage someone in your first year to provide more information and assistance. This is called Supports Coordination. InCharge provides Supports Coordination, and you can find out more here.
• You could also try Plan Management, which provides someone to assist with the financial side of things. Plan Management has many of the same benefits as self-management.

You will need to ask for these in your planning meeting. We cannot guarantee what the NDIA will decide, but we always recommend asking. For more information about some common terms used by the NDIA, check out our recent post about Supports Coordination, LACs and Plan Management.

If you’ve already been to your NDIS planning meeting and are self- or plan-managing part or all of your funds, how are you finding it so far?

This is the first post in a six-part series of confusion-clearing and myth-busting pieces about the NDIS! We hope it is helpful. As always, your feedback is welcome – particularly feedback where information you’ve received differs from what we’ve written here.

This piece is a confusion-clearing piece regarding the float for people who self-manage their NDIS funds.

Belinda Rogers, member of the Greens party and transitioning to the NDIS herself, recently spoke with InCharge intern Katy Gagliardi to clarify the confusion around the float for people managing their NDIS funds.

Prior to the July 1, 2016 rollout of the National Disability Insurance Scheme (NDIS), a float was made available to people in the trial regions who chose to self-manage their funds.

The float was one month’s advance payment so that people self-managing their funds could pay for various services and items in a timely manner. At the end of the month, payments made from the funds were reimbursed so that someone who is self-managing would never be out of pocket for expenses incurred, and that various providers would be guaranteed timely payments.

The confusion around whether the National Disability Insurance Agency (NDIA) would continue to provide a float for people self-managing their funds has continued. This is because the information provided in Module 2 by the NDIA currently states that the float will continue, whereas this advice differs from what people have been advised verbally by the NDIA.

Belinda spoke with Ian Maynard, Deputy CEO of the NDIA, who confirmed via email that the information stated in Module 2 is now out of date and incorrect – and that a float will not be made available for people who are self-managing their funds.

Instead, the following two options are available:

• The NDIA will reimburse participants via the portal, or
• Participants will need to have an account with service providers.

This change, as you may already know, raises a number of issues that potentially make self-management financially untenable for many people.

Although the NDIA have attempted to mitigate these issues by allowing for people to apply for an advance emergency payment where needed, this flies in the face of the ideological premise of the NDIS: Choice and Control. Instead of being able to pay providers on time without hassle, people with disability are once again in a position of ‘welfare recipient’ – reliant upon an external body to judge whether they are the ‘deserving’ or ‘undeserving’ poor. Given that justification for needing these funds upfront has already been provided, this money should be readily available. Instead, the decision to remove the float subjects people to continued lack of dignity around funds that have been taken away without consultation with primary stakeholders from the outset.

In any case, if enough people self-manage their funds and apply for emergency payments, this would create a backlog that would create further work for the NDIA – thus making the original plan of having a float more viable for everyone concerned.

If the NDIA reimburses participants via the portal, that means that participants will need to initially pay service providers and other relevant expenses out of pocket. This arrangement relies on a person, who is possibly on partial or full Disability Support Pension (DSP), having the funds upfront to pay for the very services, etc, that the NDIS was designed to pay for.

Alternatively, service providers will be out of pocket until the participant receives the funds via the portal, which has been problematic in and of itself since the rollout of the NDIS. In addition, given that the ideological premise of the NDIS is that people with disability will have more choice and control – if a person chooses to purchase continence aids from Aldi, it is not likely that Aldi will set up an account for a person self-managing their funds through the NDIS. What is more likely is that people who self-manage their funds will be forced through circumstance to continue to use disability-specific providers for items that they could otherwise get from Aldi and other mainstream stores.

In addition, small businesses and individuals – including self-employed support workers – may not be able to afford to have people running accounts with them, which makes it harder for these providers to work with people who self-manage their funds due to this legislative change.

This all provides a major disincentive to people to self-manage their NDIS funds. As a result, the premise of ‘choice and control’ for people with disability is eroded, and the existing paradigm of ‘choice and control’ for the funding body is once again reinforced instead.

People who are currently self-managing their funds and have experienced the benefits of this are working to have this decision reversed.

Self-management, when effectively communicated and implemented, provides huge benefits for everyone: it is a true opportunity for choice and control to occur more and more in practice, and it would be a real shame if legislative requirements continued to make self-management more difficult than it needs to be.

A ‘call to action’ for people interested in working to overturn this decision is planned for the near future. Watch this space!

EDIT: In the meantime, if you would like to express your displeasure with this decision, the best people to contact are (either/and):

• Your local Federal MP. You can search for yours here
• The NDIA feedback line: feedback@ndis.gov.au or call on 1800 800 110
• Greens Senator Rachel Siewart: (02) 6277 3587 or senator.siewert@aph.gov.au

UPDATE FROM BELINDA AT 24 AUGUST:

“The Deputy CEO of the NDIA, Ian Maynard, rang me this morning after receiving my email yesterday. He is taking this very seriously and recognises the barriers this policy places in the way of people who want to self manage. He has set up a meeting with the Finance Controller of the NDIS in early October to review and change the policy. At this stage he is talking about altering it to ensure that anyone who has costs in their plan that could result in an out of pocket expense will be able to set their plan up to have that money available as a float. It won’t be done under a ‘hardship’ provision and although it is a somewhat cumbersome way of going about it and he acknowledges it is less than perfect, it is certainly better than being out of pocket or having to ask service providers to run an account for us.

I discussed the Victorian ISP model with him and he will also be looking into that as a possible example of how self management may be done. (Slightly mind boggling that the NDIS hadn’t actually explored all previous systems before going ahead….. )

He will be confirming our conversation by email and will be keeping me in the loop regarding the meeting in October and consulting with me regarding possible changes as they arise”

UPDATE FROM BELINDA AT 14 SEPTEMBER:

“(I have received) confirmation of the meeting with the Independent Advisory Council meeting in November to look again at the policy and confirmation that participants can ask for a forward payment of an agreed amount of an upcoming cost (physio account, etc) with one weeks’ notice to avoid being out of pocket. But no actual reinstatement of the float.”

UPDATE FROM BELINDA AT 20 OCTOBER:

“As many of you are aware during the trial period people who self managed received an advance float of one month’s funding which was topped up monthly. As of July 1 this was scrapped and people either had to pay up front themselves and be reimbursed or apply a week in advance for each line item and then wait for the money to be deposited up to a week later to cover costs. This would be incredibly time consuming, difficult, prone to error and creates ridiculous obstacles when the NDIS is supposed to be about flexibility, choice and control.

I have been in many conversations with Deputy CEO of the NDIA, Ian Maynard, regarding this and have been talking to various politicians too.

Tomorrow Senator Rachel Siewert from the Greens is taking it to Senate committee hearing and pushing to have the policy overturned. I have filled her in on the impact this has been having on so many of us (whilst respecting everyone’s privacy) and will let you know the outcome as soon as I hear.”

Image of a cherub statue playing a flute

We have been writing about the different ways you can manage your NDIS funding.

1. You can have the National Disability Insurance Agency (NDIA or Agency) do it

2. You can use a Registered Plan Manager

3. You can Self Manage

4. You can mix!

These are still choices, regardless of what happens in planning meetings, and this is why we are producing this information. It is always important to ask, and to know what is possible!

In this piece I begin an exploration of Self Management.

– Lauren Hislop

A personal quest: I admit to being hesitant about self management

Do you feel the same way? Well come explore with me …..

As a woman with a disability, I have felt disempowered by services in the past. For example, I require some personal assistance to prepare for the day. I have previously asked agencies if I could meet the carers before they come to assist me. This was never OK’d.  So, my experience has typically been that 10 minutes after I initially meet a carer, I have to strip naked in front of them.   I find this extremely dehumanising and disrespectful. It leaves me in an extremely vulnerable state.  Many people with disabilities have and still are experiencing this. We have been too afraid to voice our complaints as services could be reduced.

However, we are at a time when this situation could alter dramatically.

In a previous post I wrote how I moved from my NDIS plan being managed by the NDIA (Agency managed or the Agency) to choosing a Plan Manager to help me manage my funds. My life has improved considerably.

I would like to explore Self Management for the future. I know people who are self managing. Flexibility, choice and control seem to be some of the positives of self-managing your NDIS budget.

But I must admit to feeling very hesitant about it. My first thought was “I don’t think I have what it takes to self manage”.

Is this true?

I’ve decided to figure out the answers to some of my questions and hesitations.

This piece explores some of the real benefits people say they get through self managing.

It also looks at whether you can get help to do it.

Along with my research, I interviewed an NDIS participant, Naomi, and the parent of a NDIS participant, Linda, to gain some of their perspectives of self-managing.

She who pays the piper calls the tune

If you chose the Agency or a Plan manager to help manage your funds, you do have a say, and to different degrees (which is why I chose Plan Management).  However, you don’t have direct access to the funds allocated in your plan.

Direct access doesn’t mean you can just go spend money on whatever you want. You are still accountable. Like everyone, you have to spend the money to achieve what is says in your plan. You have to keep records and be accountable to the NDIA. You may be audited.

But what peaked my interest was something Linda said. She likens self-managing to the saying, ‘[s]he who pays the piper calls the tune’. This means the person managing the money gets to determine how it’s spent. With self-management, providers are completely directly accountable to you.

Naomi claims that, “For me personally, self-managing allows me to control the various supports I need.’

Naomi and Linda believe they have more flexibility over their supports than they would if they had the NDIA manage their budget.

Naomi claimed that, “It allows me more flexibility in choosing what supports are important and more choice of who will provide them and how they will be provided’’.

Everyone stated it gives them a clearer understanding of the amount of money they have.

More choice in support

I was curious about what this meant. I understood the NDIS meant that I could choose any provider I wanted, regardless of how my funds are managed.

With self-management you can get support from a provider of your choosing, whether or not they are registered with the NDIA . If your funds are managed by the NDIA, you can only use registered providers.

In my previous piece on Plan Management I explained how I used a small business person to offer me training and mentoring to find work. She is not registered as an NDIS provider, but is someone who has helped me achieve my NDIS goal in Finding Work.

Linda’s son wants to live independently with flatmates his own age. She wants to take a supported living approach that is tailored to her sons needs. She claims she doesn’t want him in a group home where he wouldn’t have any control over his life. Traditional service providers and/or the agencies may state that people with disabilities may have to accept living in group homes.  However,  with self-management Linda’s sons’ funding can be used in a creative way to engage a person with expertise in supported living to help Linda and her son go through the steps necessary to make this work.

You might know the therapist you want to use, for example, but they aren’t registered with the NDIA.

Both say you can get more for your money. Self managing means that you can search for the best price more easily, always bearing in mind quality.  Having said that, it also means that providers don’t need to stick to the price guide, so you need to think about what is valuable to you.

You are in control of how your plan is delivered.  If you self-manage you don’t have to have a registered provider offering you services. This includes mainstream providers. This aspect of self-management could be very freeing for participants.

Benefits in employing support workers

I am learning that there are a number of different ways you can engage support workers:

• Make a agreement with a service provider to use their workers or employ workers you find
• Engage an independent contractor
• Use an online employer of support workers
• Directly employ people yourself

There are new kinds of online services which help you engage contractors or employees.

When you are self managing, people said they can more easily do any of these options.

Self management especially makes it easier for people who want to employ their own workers.

Everyone stated that self-management has given them the opportunity to recruit and chose their own support workers. It has helped them move from feeling like a client (with associated feelings of burden and being powerless) to being an employer (empowered).

Naomi loves being in control of who she employs. Self-management has allowed Naomi to seek out and employ workers suited to her requirements. She stated that, with self-management, she has the flexibility to have workers whenever suits her (and within the limits of her funding).

There is a consistent theme about this with people stating variations of “ My staff are committed to my vision and goals and they understand what a good life is to me.  I no longer have to say to my friends that I can’t stay because I have to be put to bed at 8pm—I am now in charge of my life. It is really empowering to know that I am in full control of my life and I make the decisions.”

Do I have to do all this on my own?

Linda claims that, ironically,  ‘By taking on the responsibility and self-managing the funds I could have more flexibility and importantly delegate more tasks to others’.

Linda states that sometimes self-management is conveyed as a person having to do it all by themselves. However, a person can decide what they would like to take on and what they would like help with by someone else.

‘I am terrible with numbers. I can’t read a profit and loss sheet  and really all I want to know is if the budget is on track- if we are over spending or not.  So I have a bookkeeper to assist me to understand and keep track of the budget. He also assists me with the payroll for support workers’.

In fact,  Linda also engages a key worker to lead her team of workers. She pays that person a little bit more and they have been able to take over many admin duties such as rostering.

Linda asserted that people can attend their NDIS planning meeting and say they would like to self-manage but they need assistance, especially if they have never done it before.

There are others who could assist as well

• Support Coordinator – you may receive hours in your NDIS plan for help to implement it. This will be from someone called a Supports Co-ordinator.
• A Registered Plan Manager – they may have tools that can assist you. You find a plan manager through the Provider list on the NDIS website and increasingly through other online service provider registers.
• Recruitment agencies
• A worker dedicated to making social or community connections
• Local Area Coordinators
• Peer support
• Family, friends and others in your networks

You can request to self-manage all or some of the support budgets in your NDIS Plan. You may also choose to self-manage one part of your plan to get started and learn how to do it.

Get in touch with us if you want to explore how self management could work for you or people you support.

Here are some Plain and Easy English information about self management which links to good information about employing workers.

And here as well.

Here is another good website especially about employing support workers.

Stay tuned to learn more of the details of how this works in your NDIS plan. I know I’ve got more questions!

– Lauren Hislop

An image of a love heart lodged between two branches

In this piece I hope to provide a run down of what it looks like we can expect from the NSW NDIS planning process. And some suggestions for how to make the most of the process.

It is taken from direct experience, information sessions where National Disability Insurance Agency (NDIA) representatives have spoken, and feedback from people who have already had a planning meeting.

If you have further information that you think should be shared, please be in touch as I am doing my very best to share correct information.

The transition to full scheme starts on July 1 2016. By July 2019, it is estimated that 141,957 people will transition to the NDIS in NSW.

The ‘rollout’ of NDIS in NSW is starting with people who currently receive government supports. The first groups moving to the NDIS will be those people living in large residential centres, group homes, hostels and receiving in-home support.

Image of order of how people will enter the scheme in NSW

It appears planning meetings have already started for some people in these first ‘categories’.

What happens for people not currently receiving supports is a very good question! I attended an NDIS meeting on the 31st May, where an NDIA representative said that they were looking at 6,000 new people entering the scheme in the first year, but that there was still no agreement on how those 6000 people will be prioritised.

We encourage people to test access to the Scheme regardless, and fill out the forms after July 1. Don’t sit in wonder or in hearsay from others. Test eligibility for yourself.

This is especially the case for those people who are nearing 65 years old.

Some initial information to look out for

The process for my brother (and confirmed with other people) has been to receive two letters and then phone calls.

One letter is the from NSW Ageing Disability and Homecare (what we call ADHC) and one is from the NDIA (Remember the NDIA is the Agency in charge of implementing the NDIS)

These letters basically say ‘we know you exist and we will be in touch with you’.

Please pay attention to letters!

Then there is a phone call from the NDIA asking you some questions.

I understand this is a call from the NDIA Access team, with questions to check access, understanding they are joining the NDIS, and gather information for the planning process and are not over-the-phone eligibility questions (taken from an NDIA representative at a meeting on the 31st May hosted by National Disability Services (NDS))

Then there is a call to organise the planning meeting with you.

What happens if this has not happened for you yet? Don’t panic. It’s probably that you are further down on the ‘phase in’ plan.

The NDIS ‘Pathway’

The NDIA has produced this information about what the process is for becoming a participant in the Scheme.

In this information, the words My First Plan are used. This hasn’t been used before in NDIS trial sites (For some analysis on My First Plan, you can read here and here).

Who are the ‘representatives’ you are likely to meet?

Two organisations in NSW have been contracted to provide something called Local Area Co-ordination (LAC). They are Uniting and St Vinnies.

The LACs have a big role to play in planning. They are not NDIA employees, but it appears their role is to collect the information necessary for a plan to be created by the NDIA.

Depending on answers to questions in your access phone call, it may mean you end up meeting with an LAC at your planning meeting, and not an NDIA Planner. My understanding is that people who have more complex needs are allocated an NDIA Planner.

A photo of a slide explaining the Local Area Coordination function

The meetings look to be around 90 minutes and move through a series of questions.

Feedback about these questions are that they involve asking about the details of a person’s day, and what supports they need during different times of the day.

The LAC role is to conduct information gathering on behalf of NDIA  only. They ask the person and/or their nominee a set of questions which will inform their NDIS plan. This information is sent to NDIA to develop a plan for the person.

As the slide above indicates, a large number of people will then see an LAC again to assist with implementation of their plan.

Doing all we can for our First Plan

OK, so how can we take maximum control of this process?

The heart of the NDIS has not changed

Thinking about your goals and reasonable and necessary supports to achieve these goals are still entirely relevant.

Here is some recent information on Reasonable and Necessary.

Here is information on what the NDIS will fund.

The process the NDIA outlines on page 12 of their pathway documention, is actually a good set of questions to get started with.

We must take this ‘heart’ in to our planning meeting.

Being prepared

As meetings are relatively short, it is important to do some thinking before hand.

My own experience and feedback from others has been “thank goodness we created a document and did our thinking beforehand, or we would never have thought of it all in the time”.

Getting some things down on paper means that you may feel shaky but your voice is strong. Be confident in your goals for yourself.

It also seems that the emphasis in meetings is on documenting what people already receive.

While this is very important, it is also equally important to think about any areas of unmet need:

• take care to make sure you discuss all services you have received. Some things are ‘block funded’, some things appear just to have been provided for free. But these will all need to be funded now if they are to continue. For example, you may go out with friends, but is this funded and supported through an organisation? If you didn’t get this support, would you still be able to go out with these friends?
• are there things you think are missing in your life?
• are there times you don’t have supports during the week and specific times in a year?
• times when you are receiving family support and this is not a reasonable level of informal support (especially if you are an adult and your parents are supporting you a lot)
• things you would like to change
• what is stopping these things from happening and how could NDIS funding assist?
• new things you want to learn and do

Here are some ideas from one of our Facebook posts that might give you some more ideas in this area.

It also seems clear, that we cannot expect or rely on the process to bring these things forward. We must name them.

It is also important to think about whether you will need help to implement your plan, find services and supports in your community, help to be included and get your goals achieved. This is called Supports Co-ordination. It is important to develop your own view  – based on your goals, the things you want to achieve, your life circumstance, the skills you have and the people in your life – about how much help you may need to implement your plan.

The NDIA defines this as

“Assistance to strengthen participants’ abilities to coordinate and implement supports and participate more fully in the community. It can include  initial  assistance  with  linking  participants  with  the  right  providers  to  meet  their  needs, assistance to source providers, coordinating a range of supports both funded and mainstream and building   on   informal   supports,   resolving   points   of   crisis,   parenting   training   and   developing participant resilience in their own network and community.”

You can read more about Supports Co-ordination in the latest Price Guide for your state. We will be producing more information on this as well.

A peer-developed resource to help people with planning is in the Files section of the NDIS Grassroots Discussion Facebook page.

Here is a link to our last webinar and information booklet on this topic.

InCharge is assisting people to get ready. We are happy to share our processes with anyone who is in a position to assist people get ready. We have been working with carers’ groups, individuals directly, small groups of people and service providers. We have seen the positive results of our processes in NDIS planning meetings. Contact us to learn more at hello@incharge.net.au

Think about how you want your NDIS funding managed

It is equally important to have done some thinking about how you want your NDIS funding managed.

Remember there are 3 options and you can mix these.

1. Agency Managed.
2. Self Managed
3. Plan Managed.

There is a lot of misinformation about self management and plan management. Self management doesn’t mean doing it all on your own and you can ask for assistance to learn the skills to self manage better. A plan manager and a Supports Co-ordinator are ways that you can have a partner to help you self manage. Again, please contact us to learn more about these.

Here is a link to some Plain and Easy English information on these choices.

Here is some more information on self management.

A plan manager can help you feel more confident to be in control by assisting you with managing your finances and getting your plan up and running as well.

Becoming more self sufficient is at the heart of the scheme. Self management or plan management could allow for more creativity and flexibility in how you can get the goals of your plan met.

Even if you do not get asked about this, it is your right to speak to these funding management choices in your planning meeting. There is a danger this may be decided for you without adequate discussion.

 Tips for the meeting

• Having a face to face meeting is very important and I encourage you to insist on this (just in case there might be pressure for a phone meeting or an unsuitable meeting being insisted upon)
• If it takes you longer to speak for yourself, I encourage you to stick with that and to ask that the meeting is long enough for you
• I encourage you to organise the meeting so that your family member with disability is present if a meeting is something that they could participate in, given the right structure. In this context, it could become easier for a planning meeting to happen without the presence of the participant!
• Where is the best place for the meeting to take place so that the participant can be included? Ask for this.
• Who else can participate and be present in the meeting to support and add voice?
• The meetings appear to be ‘paperless’ but I have asked about people bringing pre-prepared information, and have been told this can be accepted.  However, in practice, knowledge of this could differ from LAC to LAC (or planner to planner). So I encourage you to ask.  I encourage you to ask for the name/s of the LACs or planners, the office they come from, and an email address that you can send your documentation to and how you should “Attention” it.

But also remember

I have never felt that an NDIS will come as a fully-formed utopia that lands in our laps.

Change doesn’t come from the top down.

Any great change I have ever witnessed has happened from the grassroots, where people see a reform as an opening and an opportunity for them to grasp and shape as a way to better their own lives.

We must remain vigilant and not feel pressured into accepting things that really do not feel right. Often when we are faced with authority me may feel we have to agree to things in a rush.

Remember the heart of the NDIS has not changed.

Remember the insurance (not welfare) approach still stands.

Remember the capacity building opportunities to move beyond ‘same same’ are there to be asked if we want them.

Remember we can learn about these in Year 1 of our plan, and so be more ready for Year 2.

Remember we will still have choice of providers once we get our plans.

Remember that there is a complaints process for the NDIS.

I look forward to sharing with you the lessons learned from my brother’s planning meeting, which looks like it may happen soon.

There are many groups of people that it is very clear are at a heightened disadvantage in relation to this process. This keeps me awake at night. If you are in a position to use this information, and to research other relevant information, to assist people feel more ready, I really encourage you to step forward in any way you can.

– Libby.

a group brainstorms with a person with disability

Lyne Mear is a consultant in Human Resources, Industrial Relations and Employees Relations. Her focus is creating work places that are self-generating, solution oriented and enjoyable.

One of the questions I am often asked by people who really want to be front and centre of their supports is

“How can I get more of the good stuff and less of the big service tasks like managing people and doing rosters and paperwork?”

Many families also ask me “How do I get support workers to see what I see, to think ahead and to really do what’s needed?”

I am very pleased to share some of my experience in methods and strategies that will help you develop a positive, flexible and engaged team culture.

Paradoxically I have found that the more people are asked to report and be accountable up a line of management, the less they see things and really take responsibility. The only way to do this is to have practice in taking the responsibility, to really know ‘the buck stops with me on this issue’.

A self managing team

One of the solutions I have worked with people on, is to set up a self managing team. This is a team of workers operating in a manner that requires little top down management. There is still the need for strong governance and oversight, and connection with people, but less of the stuff that takes you away from core business in running your life and your supports.

Self managing teams work best where there are teams of small numbers that are committed to an outcome that is ‘greater’ than the individuals’ self-interest.   Teams working in social welfare, social conscience areas are ideally suited to a self-managed team system.

This idea started many years ago when I was working as a manager of a start-up disability service whose aim was to provide support for independent living for people with disabilities. I was asked to come up with a service provision model for a woman with acquired brain injury from a horrific motor vehicle accident. I needed to find a way of providing support 24/7 that was affordable and also encompassed the principals that my organisation had committed to.  This woman’s parents had the view that she needed to live independently in her own home as an adult. One of the founding principles was that people have the right to live and develop freely.  I believe very strongly in the human right to develop and grow in our own journey.  I still believe this today.

We managed both these things by setting up a self-reliant and self-organising team.  This structure held the principals of self-determination; encouraged the team to self-determine and was the most economical.  Little outlay is involved in the administration and coordination of the arrangement and the team and the person being supported have the opportunity to learn and grow in the arrangement.

That structure has been in operation now for 20 odd years and has been an amazing learning experience for me as well as all those who have been involved in the journey. I am still involved with this woman and her family. For the woman I believe it has provided the best opportunity to live a real life that could have been provided.

I am a consultant in human resources, industrial relations and employees relations, working in some pretty big organisations, and I take these principles wherever I go. I have also taken these principles to work with other families.

The key components

The components of a self managing team are:

1. communication – things must be discussed;
2. openness – things must be discussed;
3. willingess to listen and understand other points of view – things must be discussed;
4. tolerance – other viewpoints need to be allowed to be and these must be discussed;
5. clear vision – an understanding of what is desired must be obvious and understood by all;
6. collaboration – the whole concept is based on the premise of working together;
7. flexibility – there are many ways to achieve the vision. The joy and creativity of working in such a team and to experience the differing ways is amazing;
8. diversity – adds enormously to the creativity of the arrangement;
9. and a sense of purpose – comes back to the vision.

The first steps

Setting-up the arrangement is the biggest and most important piece of work.

The most important parts of the set-up are:

1. engaging and enrolling the team in a clear vision;
2. developing really clear boundaries and expectations within which they will operate;
3. being able to let go but maintain those boundaries
4. developing the systems to monitor;
5. and working with people to move from having things set out for them, to taking responsibility. This is because mostly people are not used to being able to self-manage and being held accountable for the consequences of their actions. Most people are used to reporting to supervisors.

The benefits

A team that is self managing well can do things like take responsibility for their rostering, communication and self-organise amongst themselves and develop a common purpose. They may be delegated authority around the day-to-day aspects of the person’s life and learn to think forward and dream into the person’s life, and organise to achieve those things with the person.

The benefits are that people are more able to enjoy their life or enjoy their family role with the person rather than being the ‘manager’ all the time.

I’m looking forward to sharing more strategies with you.

Want to hear more from Lyne? Click here to join our online session on February 26th 2015.

Do you feel limited by what’s on offer and want to decide how you are supported and who does it?

Are you working in the sector and want to learn more about self direction in Australia?

In this recording you hear 3 people who all self direct their supports:

• Learn the benefits of self directed support in terms you can understand.
• Discover different approaches to working with the available organisations.
• Discover how you can self direct supports under the National Disability Insurance Scheme (NDIS).
• Hear firsthand accounts on how to make the most out of your support mechanisms from people who understand.

Our sessions are live captioned and AUSLAN interpreted, although the recordings are not yet transcribed.

Image of a record and the needle of a record player

What are the elements that make for good ethical partnerships between families and services?

We haven’t been partners

Families have been very used to a system in which professionals and service providers have been invested in as the ‘solution-makers’. This model has rendered invisible the social innovation capacity of people with disability to develop their own solutions as it generates a ‘solution-receiver’ role which is largely passive. The search for solutions outside oneself means that services end up (both if you can get a service and also if you can’t get a service) playing a big role in people’s lives.

In addition, historically people receiving services have, by-and-large, been offered fixed models of care and support. This means that services are largely created before people arrive on the scene. This results in a ‘one size fits all’ approach. Such a system is not able to provide what a person needs to maximise the potential of their life. Maximising a person’s potential is predicated on a personalised system, where support can be designed with people, ‘one person at a time’.

What does truly personalised support demand?

Creating personalised solutions means people with disability will move from being passive recipients of ‘one size fits all’ care to ‘partners’, ‘creators’ and ‘drivers’ of solutions. To grasp this opportunity they will need to become engaged in the design and delivery of their own support arrangements, and become equipped to choose and direct the services they receive.

The beauty of the possibility of the National Disability Insurance Scheme (NDIS) is that those who choose to self-manage their funds may not even need to use a traditional service to provide what is outlined in their plan. This possibility needs wide-scale promotion.

We also know, however, that larger numbers of people still continue to rely on disability services. Given this, what are the elements of a genuinely helpful partnership between a person and a service?

A story to start with

My brother received a support package, moved out of a group home and into his own home in 1996. At that time we partnered with a local service with experience in devolution and supporting people in their own homes^[1].  In 2005 however, we found ourselves in a collapsed relationship with this service. Ultimately it became nasty. It rendered my brother effectively homeless for about a year. It was long and arduous, but ultimately we decided to seek a new provider and a new relationship (NB this demonstrates the importance of portability of funding).

And so this was the context in which we were about to meet the key ‘implementation person’ of another service. We already had a positive response from the CEO and now the next step was to meet the person who could help make it happen.

The meeting was arranged at my brother’s home. Big tick already. I remember we had a meal together. Another big tick. She got up and did the washing up! Yes, we stood and had a conversation about our experience, my brother’s needs, getting to know us as the washing up happened, and it was no artfulness on her part!

A sound basis for good partnership

There are many subsequent stories to tell about this woman, but all of them have a common thread of ‘stick-with-it-ness’. She aligned herself wholly with the interests of my brother and of doing her all to make things work for him. Consequently she stuck with the ups and downs of his life and getting his supports the best they could be. She still remains very connected to my brother eight years later, in friendship and guidance.

“Lucky you” you might say. The point of this story is NOT ‘if or when you find a good person, then you should go with that service’. Of course that is too random, and good people come and go too, so no, this is not a sound basis for partnership.

Rather, through this story and this relationship we can extract many things that ARE the basis of good partnership:

• ‘submissive posture’ – the onus is on me to build trust, openness, questioning, curiosity
• recognition of where people have come from and therefore what mindset they may have
• equality of relationship
• commitment to the person
• ability to effectively and repeatedly problem-solve

I summarise our relationship as: The road ahead is unknown. Quite probably lots of mistakes will be made. We can’t say what it will look like from our end. We want to say that we’ll make a commitment to you to work it out as we go.

An A-side and a B-side make a record!

Yes back in the dreaded past, there were magical things called records (check it out on Wikipedia if you don’t believe me)! A record has an A-side and a B-side. You flipped a record over, played the other side and together they made beautiful music!

Michael Kendrick explains partnership through an A and B dialogue. It was revelatory when I first heard it and made me immediately think of this record analogy. An A side and a B side are two sides of the one thing.

Actually going to Wikipedia isn’t a bad idea, because you get to read things like this, “The A-side usually featured the recording that the artist, record producer, or the record company intended to receive the initial promotional effort and then receive radio airplay, hopefully, to become a hit record. The B-side (or “flip-side”) is a secondary recording that has a history of its own.”

So you see, they are two sides of the one thing, but they both have different roles. This is the beauty of a genuine partnership. It is an alliance that benefits both because each is providing something the other doesn’t have or doesn’t want to have. In the business world, for example, good partnerships help each party go further. “I’ve got a great product. You’ve got access to a large market. Let’s make business love!” In fact there is a whole area of business theory that says partnerships are the real key to success.

Of course in our context we are talking about an historical power imbalance between the parties. We also need to take into account that relationship is not purely transactional (although I would argue that even in the business world relationships are not just transactional). Despite this, however, I think this framework gives us a very good starting point.

Adopting a mindset of “our presence will benefit this organisation”, not just this organisation will benefit us and thinking through those benefits changes the conversation. In other words don’t go in as the “underdog”. I remember even in 2005, we treated this as partnership building. When seeking a service we discussed and proposed my brother’s needs and our values, in order to find a good match. It has worked well for us and is an approach I have supported other families to use, with good results. It often results in very exciting, very relevant, living service agreements (happy to share some examples if you contact me).

This kind of approach isn’t only successful if you have a funding package. I know people who were only eligible for support that came through block funding, but managed to negotiate the personalisation of those resources through this kind of approach. For many years my brother accessed a day service that was block funded. He is too old to have been eligible for the individualised day program funding now available in NSW. My mother, ever sharp as a tack, realised the moment when his day service was to be moved to a non-government provider it could be seen as an opportunity. So we used this approach to negotiate a more individualised approach. This was the catalyst for him to leave the day program and do more interesting things with his life, like start a small business!

I’m a big believer in vision, mindset and thinking outside the box FIRST. Make the money follow and support that rather than starting with the money!

A-side

As families, we often think only about ‘what the service should be doing’. But what are our roles and responsibilities in creating an ethical partnership?

As I have eluded to, we have found it very helpful to approach service providers in the same way we interview/recruit for support workers – looking for a good match.

Take some time to develop what you need.  I know this can be difficult but it is worth the investment.  Think of it like a proposal – “hey, we are looking to do X, Y and Z. We could really use some help with A ,B, C to make that happen. What do you say to that”?  Think about what you don’t think already exists in you, your family, networks, community, and use these gaps to identify possible provider roles.

The conversations never quite go as linear as the above but it avoids the approach of ‘let’s hear what they can do and choose the least worst option’. You want to hear what a service can do, but in relation to what you need. Otherwise what you tend to get is a service menu. And often you can negotiate something new that the service didn’t have on its menu because you have articulated excitement, innovation and benefit.

Triple win thinking is so powerful here. A powerful proposition articulates:

What is the benefit to the person?

What is the benefit to the family?

What is the benefit to the service?

What’s in it for all these parties? When you are talking from this perspective you are inviting someone to join your big vision.

As families we have a responsibility too to build the relationship. If we want control and decision-making in particular areas, we must commit to the responsibilities this entails. This might mean we need to learn some things and spend time understanding them more. This doesn’t mean we have to do this alone – indeed perhaps this is what you need assistance from a provider to do. For example, I’ve been in some great meetings between providers and families who want control over recruitment, induction and supervision of support workers. Meetings where information was shared to create reasonable OHS checks, simple reporting procedures and understanding responsibilities under the relevant employment award.  If we want this control then it is also our responsibility to employ people legally and pay them fairly. We need to thank, and acknowledge where things have been very helpful. It’s a truism – but in the lead-up to the NDIS, there is no better time to be letting a provider know about the things that really work and are really helpful! After all, this is what we want more of.

B-side

There is much to be said about what would be helpful from the service provider side, given the historical power imbalances in this area^[2].

I want to focus on 3 things that can really assist families as part of an ethical partnership. They all focus on helping families address adaptive barriers to change. This is a capacity-building agenda. If we have a situation where services are simply saying “we’ll just do what the family wants because that’s empowerment”, this is not always helpful in terms of the goal of developing life-giving opportunities for the person with disability. And after all, this should be the driving ethic of both service provision AND family-governance.

Firstly, families themselves are not immune to being blocked by the same things that block society in general; for example, low expectations, not having a sense of what is possible beyond current experience, having past negative experiences that make them risk averse, and trying to work things so that they can get on with their own lives (which might mean the person with disability is not always placed first). This means that families too might only be making choices within the perspective or experience they know.

‘Choice’ is a word bandied about a lot. It is very helpful to find ways of working with people that develop trust. When trust is present, it is possible to ask questions and have conversations in which people can start to see choices that they didn’t think were once possible. Services can assist families by exposing them to peer leaders who are doing things they might not have imagined possible.

Secondly, when we are seeking to be the author of our own life, many things have the potential to derail us.  For many people for example, the fear of being rejected when you take a step forward in your community can be a huge thing, but making lasting change depends upon stepping forward.

Thirdly, if given time and a structure to ‘imagine better’, rather than simply focusing on what is not working, I find families have no shortage of fabulous ideas and often the energy and tenacity to try, fail and try again. Even very tired people!

People become hungry for ideas and strategy on how to make their vision happen. Services could provide this structure.

These could be fabulous assistive possibilities on the B-side, where a service takes an ethical stance ‘alongside’ (not ‘doing for’) people in their own efforts at change.

As we can see this doesn’t just involve saying “we’ll do whatever you want because it’s your choice”! An ethical partnership can involve gristle, challenge and breaking new ground.

For a range of awesome perspectives on this topic, click here for journal by Belonging Matters 

For a shorter version of this piece on the Every Australian Counts website click here

The right people are more likely to step forward when you are really clear on the purpose of paid support. Additionally, people are more likely to stick around when they are fully informed of the expectations and when they understand and share your vision. Unspoken or hidden expectations tend to lead to disappointment and to unnecessary turnover.

Start at the end

Asking the question, ‘What is the end result I am looking for?’ is a really great way to start thinking about purpose.

The importance of such a question can be revealed in exploring this scenario. Consider someone who likes gardening. You might consider matching paid support to this interest and conclude that finding a gardener is the way to go. Taking some time to consider purpose, however, can reveal some interesting differences. If the purpose of the role is to build a garden, finding a gardener might work. But if purpose is to increase opportunities for connection to others through this interest, a person only skilled in gardening may not cut it (excuse the pun).

Here are some other ideas to assist your thinking.

Think about how others get the task done

Ask: how do other people get this thing done or achieve this?
Firstly, think about the task that needs to be done. Now think about how that same or similar issue is solved by other people. How do others in our community get this kind of thing done?

This gives us some great clues on what we want to model and replicate. Sometimes we tend to jump to service and paid responses first. But asking this question allows us to take a breather and see if there are other solutions we could put our energy into (the time and energy we would be using to find paid assistance or service solutions).

So give these scenarios some consideration in light of this:

1. You’ve lost track of time and now your garden is in need of a makeover.
2. You need your lawn mowed regularly

• you have never tried mowing a lawn before and aren’t sure if you could do it.
• you could learn but you aren’t interested and prefer to dedicate time elsewhere
• you aren’t able to mow your lawn

What are different solutions to these scenarios?

Generally the more formal, regular and structured the task is, the more likely it is in our society, to seek a paid solution. But a lot also depends on our family culture, background, gender, the place you live, income, age…… So think about what makes sense to you.

I know in my life, I would be more inclined to turn my dishevelled garden into a social opportunity, provide food and drink or even offer to assist friends with something in exchange for their help. Our lawn is large. I can learn to mow but I’m not interested in mowing. However, this is not something I think is reasonable to ask a friend or neighbour to do on a regular basis. Sure – collect my mail, feed my cat for a couple of days. But not mow the lawn regularly. A neighbour might offer because we have built a reciprocal relationship, but this is different to me asking. Additionally our living expenses mean that getting someone else to do this regularly is not possible. So I need to mow my lawn. But you might have a different response that fits your culture, family, income, community etc! It’s the process of thinking through that is important.

This kind of thinking helps us understand the place of paid support, whether it is actually needed, and also helps us think about the place of informal relationships and whether we could focus energy on this rather than on paid support.

So ask yourself: what can a paid person bring that natural support might not bring? How can paid support add value to what I already have? (not take away or cut off an opportunity for growth of other kinds of relationships)

Regularity, structure and formal teaching are some examples of answers to these questions.

Some other examples are:

• Social connection/bridge building into different parts of a community
• Building a fuller picture of who the person is: helping the person learn more about themselves, trying different activities, exploration and trial. This can be important for people whose interests are unknown or unexplored
• Learning new skills
• Personal care
• Role modelling and mentoring – behaviours, feelings, thinking
• Generating new ideas – creative, innovative, considered ideas
• Team development – developing the cohesion and functionality of a team
• Work or business development

Clarity on role and purpose really helps us to hone the characteristics we are looking for in people. What qualities, skills and interests are we looking for in people? Let’s look at that next.

We’d love to hear your thoughts on successful techniques.

If you want to learn more,  join us for our upcoming webinar on December 9 2014!

Click here to hear what a participant has said about our sessions.

Register here for our webinar on the 5th November 2014

Register here  for our information sessions in Newcastle, NSW, on the 13th and 19th November 2014

In this video, Linda Hughes talks about self-directing supports for her son

In the video below, Catherine Mahony shares why she chose to direct her supports under the NDIS