Image of three girls fitting large blue puzzle pieces together.

This is a guest blog post from Cheryl McDonnell, a parent who has been through the NDIS process. Many thanks to Cheryl for these handy facts and tips!

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It all started with the fourth piece in our confusion-clearing and myth-busting series about the NDIS: ‘Is it true that self management means hiring all my workers?’ We received great responses to this piece, and asked one commenter, Ellen Fraser-Barbour, to write a guest blog post based on her thoughts and concerns around the new ways people with disability can hire their support workers.

We published her piece ‘Yes we want to hire workers more easily. But let’s also talk safeguards and support’, which then inspired us to seek responses from three new kinds of organisations: Better Caring, Hireup and MySupports.

To recap, the three issues Ellen raised in her blog post are:

Issue 1: How do we show commitment to building trust between people with a disability, families, workers and organisations?

Issue 2: What avenues are there for disclosing issues safely and confidentially if things go wrong between individuals and their workers?

Issue 3: Who is responsible for offering professional development to individuals, their families or their workers as we navigate this new NDIS world?

Why these three organisations? Because they represent the different kinds of options and because they are all interested in people taking greater control of their services and supports and to assisting more people self manage. There are other organisations that provide similar services to those listed above, and we recommend doing your own research before deciding on who can best support you in hiring support staff.

Before you read their responses to Ellen’s issues it’s important to know some of the differences between them. It provides an important framework for their responses.

Hireup is actually an employer. They just help people connect with each other via an online platform as opposed to a physical office.

Better Caring is a an online platform that connects people with disability to self employed people (independent contractors). This means their relationship to people on their platform is a bit different to Hireup.

Lastly, we invited MySupports to respond. They are also an employer. We invited them because of their commitment to employing people with disabilities and family carers, and because of their interest in promoting and developing self directed supports.

We thank Ellen, particularly, for her contribution to this important and growing conversation. We’ve edited the organisations’ responses for length and cohesion, but we’ll provide links to responses these organisations post to their own pages over the coming weeks. As always, if you’d like to add your thoughts, experiences and questions to the conversation, you can leave a comment below or on our Facebook page, or send us an email.

We’ll now hand over to Better Caring, Hireup and My Supports, whose responses are on the following pages.

Better Caring – next page

Hireup – page 3

My Supports – page 4

Well we got some great responses and comments and asked one commentator if she would like to write a Guest Blog to keep the conversation going. Thank you Ellen Fraser-Barbour*! We think you have raised some excellent points to consider around the recruitment of support workers.

We have reached out, and are hoping that our next piece is a response from some organisations discussed in our original piece. That way we can get a really good conversation going.

Over to you, Ellen.

Photo of Ellen Fraser-Barbour

The NDIS market has seen a rise in the range of services offered, from large traditional provider models to smaller in-community neighbourhood team and online connector models. In my experience the NDIS is opening doors to new exciting opportunities and this should be encouraged.  In my experience online models offer simplicity, flexibility, ease of booking, convenience and affordability. In-community support workers working within an agency or team, can offer a degree of support and “back-up” when planning and managing all the ins and outs of what this important work entails.

I have been wondering, however, about how these new types of self management models safeguard. Yes they, alongside all service providers, have policies in place to ensure safety, security and support for individuals, families and workers and these policies are vitally important but I can think of many examples where traditional large agencies are up to the hilt in policy but do necessarily invest in developing an active organisational culture or practice that truly embraces a human rights approach at base level. Policies are there, but putting this into practice seems to be easier said, than done. This has been highlighted in recent inquiries into abuse in disability services.

If questions of accountability and complaints processes were difficult to ask within large traditional service systems prior to the NDIS, it is now an urgent consideration with the NDIS. Bureaucracy is still there and it is still exhausting and ‘messy’ and complex for people with disabilities and their families to navigate. The only difference is that ideally, people with a disability now decide who is worth the stress and who isn’t.

In my experience, the issues of safeguarding are not black and white, like they might seem in policies. I can think of many examples of risky scenarios and ethical dilemmas people find themselves in every day. Life is complicated and there may be times when individuals or families are under immense stress. These stresses vary over time and place. Some situations of crisis are very apparent but others seem more hidden and are not identified until things have already escalated and workers might need to be able to respond in a moment to these situations. Adversity and crisis can take over and informal support networks may disintegrate. In these circumstances, support workers and professionals may be the primary point of contact for support and a vital link. In reality, however, workers may only be employed for short times, may not be not highly skilled and are working for a basic wage with a high turn over rate. There may be times when there’s a crisis beyond the scope of what that worker can deal with. I think there are times when the worker may well decide it’s “too hard” and leave, or alternatively, individuals may question the actions of workers and may well decide to sack. One hears about families who have been through a whole range of workers lasting a very short time. I think this usually suggests that the support networks fail both workers and individuals.

I think this is where Support-Coordinators or case-managers can be useful. If they’re good at their job, they would be “checking in” to see how things are going with individuals and with their support ‘team’. There may also be times when conflicts happen (because we’re human) and NDIS goals slip to the bottom of our priority list. Issues need to be addressed rapidly, calmly and sensitively and this is aided when there is an identified person available and accessible within that person’s network. Support Coordinators can debrief with families and assist with transitioning to new supports or linking to other disability or mainstream services.

At base level, questions need to be asked about safeguards when self-managing support workers. I admit to feeling out of my depth in even trying to pinpoint some specific questions and I worry I’m opening a can of worms, but I will put myself out on a limb here in the hope that some conversation is generated.

Here are a handful of questions I think organisations or self-managing employers could consider.

How do we show commitment to building trust between people with a disability, families, workers and organisations?

Without trust, it is very difficult for anyone to feel safe disclosing concerns. We are human and what is conflicting for one person, may not be for others. I think this is particularly relevant if connecting workers & individuals online without face to face meetings or a “middle man”. Expectations of stakeholders aren’t always made clear.

What avenues are there for disclosing issues safely and confidentially if things go wrong between individuals and their workers?

If support workers are not part of an organisation who do individuals and/or workers negotiate and receive support from, in times of conflict and stress? Being the direct employer is appealing when things are going well. With participants “driving the bus” so to speak, it means issues should be discussed with them first (as it should be). But what happens when there is a crisis and the person with the disability and/or their workers need more support and resources?

In my experience and from what I have heard of others, even in large organisations with strict hierarchical structures, support for individuals and workers is often lacking in times of crisis. With more workers without any back up or organisation, how are stakeholders protected when approaching sensitive concerns and possible conflicts?

Who is responsible for offering professional development to individuals, their families or their workers as we navigate this new NDIS world?

How is training is offered and how frequent is this training? In particular how do self-managed employers and independent employees access professional development to keep abreast development in the field and up to date best practice? How do we standardise training across sectors in light of the NDIS?  In circumstances where agencies are involved, how much time do service providers really have and how often do they touch base with both individuals and workers and offer professional development, training, debriefing or support?

Of course, these are just a handful of questions one could ask – the issues are complex and I don’t think there are silver bullet solutions or quick answers in terms of how we navigate safeguards and dignity of risk. I am, however, an optimist and a believer in generating conversations about where the gaps are.  These conversations need to represent diversity in order to be truly productive. I hope that there are opportunities for the voices of many to be heard.

I also hope that in writing this piece, I might encourage people to share personal experiences and ideas about how we engage, build bridges and offer the best quality supports and continue to work towards progress.

*Disclaimer:   The author wishes to make it clear that this writing does NOT represent the views of organisations she works for – past or present and is merely her own perspective.

NOTE; The majority of concerns are not necessarily about abuse, or violence and are not severe in nature- but there are times when they are and in these circumstances professionals at all levels of services are mandated to formally report any incidences or suspicions of abuse, violence or neglect to their respective statutory bodies such as the Child Abuse Report line (in SA).

Ellen Fraser-Barbour

This is the second post of our six-part series on confusion-clearing and myth-busting pieces about the NDIS. As we said in the first post, What’s going on with the float for people who self-manage their NDIS funds, please respond in the comments or contact us if you’ve been given different advice from the National Disability Insurance Agency (NDIA)!

This is another confusion-clearing piece – this time about the difference between Support Coordination, Plan Management and Local Area Coordinators (LACs).

Support Coordination

As an NDIS participant, you (or your nominee) become responsible for getting started, understanding your plan and its budgets, and finding and connecting with supports and services in your community to achieve your the goals in your plan.

A Support Coordinator is someone who could be funded separately in your NDIS plan to help you do just this!

They are like the person you can look at and say ‘Holy cow now I have my plan what do I do now?’

They should be like a partner to you to ‘breathe life into your plan’ and become your contact person.

At present they must also be a person or provider who is registered by the NDIA to provide this service.

The official definition of Support Coordination by the NDIA is

‘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 find more information about Support Coordination in our Mixed Messages: My First Plan (and How Do I Help People to make the most of their Planning Meetings blog on LinkedIn. If you think you need Support Coordination, you will need to discuss needing assistance for implementing your plan in your planning meeting .

For more information about the services we provide, click here.

Plan Manager

Plan Management is one of the ways you can manage your NDIS funding package. Remember there are three options:

• Manage your own funds (self-management)
• Get a professional to do it (plan-management)
• Let the NDIA do it (agency-management)
• A combination of the above.

Again, you will need to say in your planning meeting how you want to manage your NDIS funding package – and you can choose a mix of these options in a way that best suits you.

So a Plan Manager can help with the financial tasks of a plan. For example, organising providers and their payments, processing of claims and invoices and tracking of budgets. They may also do some tasks like a Support Coordinator does – for example, liaising with providers and perhaps trouble-shooting. They are also paid separately in your NDIS plan to do this. They must also be a registered provider.

Like self-management, if you plan-manage your funds, you can use any provider you think will help you achieve the goals in your plan. They don’t need to be registered. We have assisted people link with local services that are not NDIS registered to help achieve their goals – local small business advisors, personal concierges and cleaners as some examples.

So choosing a Plan Manager can be a great way of getting the benefits of self management, but with someone to assist with the financial side of things.

Remember that our social media assistant, Lauren, uses a Plan Manager, and writes about it here.

Local Area Coordinators (LAC)

An LAC may be the person you meet with during your first planning meeting, and then perhaps afterwards.

Because of the large number of people coming through the NDIS, LACs have been tasked with gathering data and information from people in their planning meetings, and will pass this information onto the NDIA so they can turn it into a plan. That is, they have taken on a planning role, although only the NDIA has authority to create an actual plan with dollars against it.

The NDIA has also said that a number of people will be allocated an LAC to help them implement their plan, and perhaps this will be for people they think only need a small amount of help to get started – not for those who need Support Coordination.

We wrote about the specifics of the NSW planning process here.

LACs do not work for the NDIA. In NSW, St Vincent de Paul and Uniting are the organisations that received funding to do this. There are also LACs in some parts of Victoria. Tenders for other States are happening now.

There is some controversy surrounding LACs taking on these planning specific roles. This is because this was not the original intention of the role. Indeed, LAC has a long history in Western Australia, particularly, of vital community development and capacity building work. This is because it is understood that genuine inclusion takes more work than just people with disabilities using their individualised funding packages. For a recent critique about this read here.

Summary

Support Coordination is when someone helps you to implement your plan, get started and find services and supports in your local community. Plan Management is one of three funding options you can use to manage your NDIS funds, and Local Area Coordinators (LACs) have been tasked with gathering data and information from people in their planning meetings, and will pass this information onto the NDIA so they can turn it into a plan.

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.

Photo of Lauren Hislop

Loving what you are reading on our Facebook page? We’re thrilled to have Lauren on the team and hope to bring you lots more fantastic and useful information via our website and social media.

Let’s hear more about her!

“Hi I’m Lauren. I’m extremely passionate about inclusion and human rights. I have cerebral palsy. I don’t think having a disability is a big deal. Some people have red hair, some people have a disability. It’s just a fact of life. Unfortunately often society doesn’t view disability in this way.

My disability has certainly not prevented me from achieving my goals. I’m a social researcher with three university degrees (I collect degrees as other people collect stamps).

I am intelligent and extremely humble [not quite]. I collect uni degrees like people collect stamps! I love reading. I even read expiration dates when I’m desperate. I live with my partner. I love theatre and art galleries. I love spending time with my partner, family and friends. I love discussing ‘taboo’ topics such as politics. I also have a very unhealthy love of tea.

I am also an NDIS participant and live and work in the Hunter NSW site. I have had involvement with helping people with disabilities get connected and informed in this region.

As you can tell I have an ‘ordinary life’. However, without the right kind of support this “ordinary life” would not be possible. I’ve confronted challenges to obtain this ‘ordinary life’. I’m still perplexed by people without a disability who are surprised when I tell them about my life. They are surprised that my life is seemingly ‘normal’. This illustrates an ingrained notion that people with disabilities cannot achieve an ‘ordinary life’.

Some people have perceived my disability as a deficit. I don’t see my disability in this light. I’m a strong proponent of the social model of disability. I believe that society ‘disables’ people due to prohibiting them from accessing the community.

It’s sad that in 2016 some people are still prevented from living how they choose. However there are many people achieving this. We should share our stories with each other. If we embark on this journey together, hopefully everyone will be able to achieve an ‘ordinary way of life.’ I believe this is what InCharge is about: Helping people to live how they choose and to live an ‘ordinary life.’

Jo had to go back in time to a time and an activity that she remembered gave Emma joy. She experimented and bought a shredder. Emma now has a business – Master Shredder - with 4 business clients including a credit union and solictors’ offices. She can now see a reason to communicate and is wanting to go out on her own and with friends.

Here is the link if you’re looking for more information on where and when.

I am interested in people getting the most out of the NDIS. And for me this means transformation. It means moving from the margins. It means having a life where you are more than just a client or an object of other people’s purpose. I don’t believe that transformation ever lands solely from ‘on high’ or from the ‘top down’.

In my experience those that are smashing our perennial low expectations, who are citizens in the broadest sense of that term, those who can see that their own life means something, all of them have seized moments when the system has popped out with something that can be shaped. Transformation starts with an intent – I no longer desire to accept that what is offered is all that is possible. No planner, no system can make this happen. This is an inner spark for more.

We are undoubtedly meeting a flawed process with the NDIS. I look on forums regularly where the many flaws appear. We’re told there’s a chance now, but many of us wonder ‘is there really’? Much of our life experience tells us that most things that get announced as big and shiny and wonderful never turn out to be that way.

In my personal and working life I’ve seen the terrible – segregation, exclusion, low expectations, congregation. I’ve also seen the flip side. I’ve seen what it looks like when people are experiencing and striving for their deep yearnings – to be someone, to belong, to love and be loved, to contribute, to feel their own life speaks and means something. I’ve learned a thing or two about the journey from one to the other.

These are some of the elements that I think are core to this change. It’s more than a package of support. Yes, having dollars are essential to exercising and maintaining genuine authority in your life. Being in charge of those dollars too. But it’s more than the money. I’m sure I’m not the only one who has seen extraordinary resources spent on things which do not really improve life opportunities for people. Instead they continue to waste people’s lives.

________________________

“If I look at you like an impoverished person and you see yourself as the same, then no amount of money will make change”

________________________

This is the practical work of InCharge and so my vision of being a contributor to those wanting to grasp an opportunity for change. To work with people on their desires for themselves and their lives. And then help put the pieces in place around that – including supports, dollars, staff, services – that will help bring those things to life. We build from the ground-up with people.

Many people can’t speak these desires. That doesn’t matter. There are many ways this can happen. It may only be a niggling – surely there is more to life than seems to be on offer! Or an expression of continued dislike and complaint. A long list of things that aren’t right (this is how my family got started on change). Or non-verbal expressions of profound unhappiness and lack of control. People who are crying out for change.

We must also demand differently from our systems and services. This is a ‘top down’ piece to be done by our governments and by the NDIA. There is a lot of work to be done to move away from ‘special’ programs and solutions that further serve to segregate and exclude people. I was very heartened to hear Rhonda Galbally speak at a conference in Sydney recently where she described work that the NDIA Independent Advisory Council had been doing on ‘reasonable and necessary’ supports. The starting point for that she said, is the question “What is an ordinary life?” This is where we should be moving with reasonable and necessary. The NDIS should be funding the gap between the answer to that question and where a person finds themselves. This would help stop the NDIS from thinking more of the same is OK, she said. Hopefully the proof will be in the ILC and planning process pudding. How does this come to play out in the planning process regardless of the planner sitting before you?

But life is more than a planning conversation. It is also about how we choose to use those resources. What we direct them towards. Are we asking for different as well?

These are some of the qualities I think are characteristic of genuinely innovative service responses.

Focussing on sustainability

Long lasting, personal relationships are the key to ongoing quality of life. Creating a more inclusive society by assisting people to tap into the wealth of ideas, people, energy and financial resources within their own networks, or to build these where they don’t exist.

Promoting active citizenry

People are not just receivers. Showcase and build on people’s innate capacities and interests, in order to realise potential.

Addressing adaptive barriers to change

When we are seeking to be the author of our own life, many things have the potential to de-rail 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.

Aspire to be ‘alongside’ (not doing for) people in their own efforts at change.

Developing rich relationships

Dissatisfaction with the dominance of paid relationships, and so breaking this dominance and offering people a vision of a life lived with many different kinds of people and relationships.

Welcoming environments

Working with the richness that already exists in our communities to assist it become more adept? at inclusion. Enduring relationships do not come from services, they come from the building blocks of the neighbourhood. That means investing in communities to become more competent. It means supporting an individual by growing community with them so that a service is not the bringers of the answers, but the bringers of the questions.

Autonomy and control

Focus on the conditions in which autonomy and greater control by people themselves can thrive.

This is more than just ‘goals’. People need to be ignited by something to strive for in their life. But they also need supportive, encouraging and challenging people around them. They need valued roles and services that are personalised and directed by people themselves.

I look forward to building and seeking these responses.

Libby