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

Carolyn and her husband with her team of 5 people

A self directed approach enables me to recruit and choose my own team of staff who assist me to live in my own home.

After 20 years of independent living and using a wide range of services, staff and models of support, I believe the success of my care is based on the quality of the relationships I have with my staff and the work I do to make this work for me.

With the right team you can work with people who understand a ‘give and take’ approach, are flexible and have the will to help you solve problems.

Get the best from your team

It’s essential to be clear about your needs. Honesty is the best policy.  And be clear about what you expect from them. Ambiguity is not helpful and usually leads to miscommunication.In addition to being verbally clear, use a responsibility checklist, or more formal contract.

Model the behaviour you expect from them. If you tell them you will cover their shift then cover it.

It takes skills in negotiation and sometimes creative thinking if shifts need to be swapped or changed in emergencies. For instance, staff contact me directly if they are sick or have another problem getting to their shift. I can then assess the situation, and I generally know the commitments and schedules of each staff person. I may offer a bonus if it is very late notice. If I get stuck I have the numbers of a few agencies that are 24 hour contactable who could find staff.

I rarely rely on family to fill in. Unlike the bad old days when I was constantly getting stuck without support, busting for the toilet or missing out on meals.

Keep the right people

Once you have created a great team it takes work to maintain it. Just like anything maintenance and servicing cannot be overlooked otherwise the whole car will start to shake.

Over the years I have developed a strong team culture. I have had little turnover and I feel very positive about the people in my team and I know they feel positive in return.

One of the things I think I do well is to pay attention to people and pay attention to the relationship. I understand that it is a person’s job and that supporting me is just one aspect of their lives. So I take a really wholistic approach and this has served me well. I put a lot of emphasis on relationship, celebration, positive feedback, focussing on their strengths and keeping them well informed.

While I still need to step in on occasion and address problems with team members, I have found these strategies have lessened the difficulties.

I’m really looking forward to sharing my top 8 tips with you that you can use to create a positive team culture.

Want to hear more?

Carolyn is one of our guest speakers at our next online session on February 26th 2015.

Click here to find out more and register.

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.

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.

At InCharge, our mission is about working with people to discern the personal and collective elements that are going to make self direction a lasting experience.

Our work this year has largely been with people who require the assistance of others, mostly family, to be directing their supports. We were thrilled to have raised funds which have allowed us to develop a terrific team and undertake our first Ally Project. We have continued to strengthen our partnership with Supported Living Network and its members, as well meeting and working with families in a number of other forums.

In this last piece for 2013 I would like to reflect on the key issues of significance emerging from our work and what we find has been of assistance to people on the path of self-direction.

People’s great ideas require noticing and safeguarding for innovation to be replicated

Often people have no shortage of fabulous ideas and the energy and tenacity to try, fail and try again. They have found a freedom, a satisfaction in directing their supports and funding. They are finding a release and the ability to work on things they have been thinking about for some time but haven’t had the opportunity to do because of the traditional disability service system.

We have found that there is great deal of worth in helping people reflect on their successes and the enormous achievements they are making.

In reflecting with people, we can also be of practical use through recording systems or ways of doing things that are working for them. Through this we find people more easily notice things that they can replicate and discard things that aren’t working. For example, many people are developing very interesting ways of recruiting paid supporters. Simply listening and recording what people have done and offering perspective (eg “It sounds like you have most success using a local networking approach to recruiting.” “That’s right, I do!”) is extremely helpful.

Validating people’s efforts, simply put, helps people to keep going.

It is also vital that people connect with each other and investing in peer-support is a crucial piece of the puzzle.

While many people have great ideas this sometimes masks that they may be experiencing challenges. They look super confident and super productive to the outside world. Of course people are productive. But every person is still on their own path with its challenges and its ups and downs.

With families who are doing a lot of the imagining and thinking with their family member, they can still be 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 us risk averse, and trying to work things so that we can get on with our own lives. This means that we too might only be making choices within the perspective or experience we know.

‘Choice’ is a word so bandied about. We have found it 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. People must be exposed and experience other peer leaders who are doing things they might not have imagined possible.

Where once services did all (or nothing)

We’ve been very used to a system in which professionals and service providers have been invested 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.

I invite you to think for a moment about how you become known to others. How do you form relationships? We meet people throughout our life as we venture forth. School, work, university, travel, leisure, community involvement, political and religious interests. Whatever. Think of all the places and ways we meet people. Some who stick; moving from acquaintance to friend, some becoming a best friend, a girlfriend or boyfriend, perhaps a partner.

Imagine them like circles around you[1]. Those closest to you in an inner circle. Those who are more like colleagues and acquaintances in a more distant circle. The services you connect with on the outer circle. These web of relationships provide us with strength, identity, improved mental health, fun, belonging, assistance and all those other thoroughly researched and documented things we know relationships provide.

The life experiences of many people with disability and their families can be quite different.  People may be more visible in our communities that at any other time in our history, but too few remain truly known. Isolation is still a common experience. There are many possible reasons for this. But what it results in is often a more fragile or smaller web of relationships.

As you become isolated you may rely on ‘the system’ more. That same system that is invested with ‘having all the answers’. Additionally it is a highly changeable system where people come and go from their jobs, where Departments re-shuffle, where funding and eligibility for programs waxes and wanes. Where the quality of what you get depends highly upon the values, skills and experience of the person at the other end of the line (regardless of how much training they receive).

So now we have an image of quite fragile networks and friendships around people, and a service layer that is also compromised (but heavily invested in).

Building supportive relationships is crucial for sustainability of self-directed supports

In NSW the ability to ‘self manage’ funding in certain program areas has, for some time now, offered people something incredibly important. The opportunity to describe goals and needs in your own terms, define the solutions to meet these and to direct the use of resources to achieve them.

This is a hugely innovative force. People’s ideas and solutions have leapt forth. People’s capacity to create, sublime.

Service providers supporting people to self-manage are now ‘stepping back’.

So what happens when we are choosing this path but still in a context of fragile, emergent or perhaps even very few relationships?

This is a big question for the sustainability of a self-directed experience. All that energy, creativity, drive, innovation and liberation needs to be sustained.

The ups and downs in all of our lives are sustained through relationship. All of us need others who hold our life vision and support us achieve it into the longer term.  This is a key aspect we would use to describe friendship, and certainly partnership/marriage, I am sure.

Heart and head learning

We are finding that people are benefiting from input, not just with the technical aspects of self-management but also with the stuff of building relationships for a long lasting and ultimately liberating experience that self-direction is aimed to be.  This is both the case for developing robust informal supports as well as paid supports.

Once you have recruited support workers, for example, how to do you engage them in your vision, support them and develop depth in them so that it is a relationship that bears fruit?

Informal relationships can’t be built overnight.  And we can’t just assume that ‘community’ is now going to take up the space where services have been. The historical experience of segregation and congregation has meant that our communities are largely unused to, and inexperienced in, including and involving people. Yep, there are many people who are just plain a^&holes. But there are also those who are interested when approached but extremely tentative. They don’t know what to do.  But they might do something if given some assistance.

So there is also a genuine role here for some bridge-building assistance. We find it takes understanding the needs and desires of both parties to achieve a well-supported inclusive community experience.

Key steps have emerged through our work. Building a strong foundation entails clarity of vision by and with the person with disability. It also entails discerning the ideal roles parents and engaged siblings in the support system (and so gaining clarity on what other roles would be of assistance if we don’t want to do them), achieving balance across a range of relationships and building mutuality and reciprocity.

When we talk about stepping out, asking, inviting and connecting, this can be emotionally tricky work. Our fears are present. We might have attended many seminars and intellectually know what the pieces of the relationship-puzzle are, but actually taking that step is a totally different matter.

We have found a couple of things helpful here. Firstly our work has focussed on action-learning from the heart and the gut, and not only the technical skills needed for self-direction. These are adaptive learning skills.

Secondly assisting people to imagine and develop  ‘community engagement’ style roles. These are roles assisting people establish greater links into their community, and build and strengthen relationships with people beyond family. We know the NSW has funded the Ability Links roles in the Hunter as part of the National Disability Insurance Scheme launch. It has said that it will roll out these positions across the state by July 1 2014. The success of roles like these depends upon a lot of factors. We are interested in supporting grass-roots community engagement initiatives with roles developed and governed by people themselves as much as possible. Our work with Supported Living Network shows that the work of community engagement can be highly nuanced and sometimes needs micro-community level work to even establish one successful role in community for a person with disability. This work simply cannot be done without knowing people well and with large case-loads.

So we are developing ways for more people to benefit from independent, grassroots community engagement roles in 2014.