Image of bright yellow sunglasses and beads

Getting NDIS ready is also about deciding how you want to manage your NDIS funds.

There are three ways to manage your NDIS funding. The National Disability Insurance Agency (NDIA) can help you manage payments to your providers, you can manage these payments yourself (Self Management) or you can have another provider (a Plan Manager) assist you. You can even mix them!

In your planning meeting we want you to be informed about your options so you can state clearly what you would like to happen.

We’re going to be dedicating some air time in the next while to the two options called Plan Management and Self Management.

Please note that at the time of publication the NDIA launched a new website. On the old website there were two documents that clearly described Plan Management and we cannot locate them on the new website despite a lot of looking!

So….. Here is a link to information published by the A.C.T Government about these choices.

Here is another run-down about it.

These three options for managing your funds continue to exist!

Plan Managers need to be registered providers, so you can find and engage with them once you receive your plan, and through other organisations and businesses which are now listing providers.

Lauren Hislop lives in the Hunter NSW NDIS site and tells us about using a registered Plan Management provider.

Photo of Lauren Hislop

Goals are a bit daunting important

A few years ago I was initially a bit daunted about the prospect of setting goals for my first NDIS plan. I thought, “what if I’m currently satisfied with my life?”   However, as I did some self exploration, I discovered that there were, in fact, areas of my life that I wanted to improve.

I considered questions (and you can too) such as;

“what do I want my life to look like?”

“what excites me?” and

“what would infuse my life with colour?”

I had to be open to the possibilities.

My advice to people planning their goals is not to be afraid to dream big. When I first wrote my goals I was afraid to dream big. I wasn’t sure what goals to list, and maybe you aren’t sure too. However, with encouragement from others I dared to state my desires.

One of my goals was and is to find work.

Obtaining employment is one of my greatest desires. Being equipped with three university degrees I assumed I would get a position. However due to structural barriers I have found it a struggle. Unfortunately my disability overshadows my skills.

Turning goals into reality

Once I had established what my goals were, I had to figure out how to implement them. My goals were a template for my life.

When I received my first NDIS plan, it appeared great on paper. However I had no idea how to use it. I consider myself intelligent and yet I couldn’t figure out how to take advantage of it. At that time, NDIA were paying my support providers directly. Unfortunately I began to feel nothing had changed from before NDIS. I had the same agency providing me with the same care, but I was wanted something different.

Infusing my plan and life with colour

Last year I decided to engage a plan manager to help manage my funds. I also had some Supports Co-ordination hours in my plan to help with these kinds of things as well. I chose a local organisation that don’t provide any other kinds of services. I really like their independence and their values. These are two important things to look out for in my opinion.

From the moment I engaged a plan manager my life began to infuse with colour. I cannot believe how my life has changed. I have a plan manager, who puts me at the forefront of making my own decisions. They check to see how I’m going. They have done things like:

help me recruit my own workers

keep track of my budget

pay and process invoices

problem-solve with providers

This is definitely the best choice for me. I feel like I’m actually living life! It is so good to know that you are in control without having to deal with the mundane bits. It has made the principles, such as choice, a voice and control a reality in my life.

Gaining skills and finding work

Because I plan manage, I can use different kinds of services and supports to achieve the goals in my plan. I can definitely use disability services if I want, but I can also think beyond these. Previously I thought I had to use disability support workers for everything. This is one of the benefits of plan management and self management. I can look to different people, businesses and organisations in my community to help me achieve my goals.

In my plan I have some funding to help me develop confidence in my ability to undertake paid work. This is the importance of thinking about goals, because if I didn’t state this as a goal, it might not have led to this funding.

One brilliant outcome is I have used this funding to improve my professional skills.

I am a researcher and writer and have been looking for work in this area. I have been writing for  different disability rights organisations. There is a lot of great opportunity here with a growing number of organisations valuing and paying people with disability to write. This got us talking about the online world, content marketing and social media marketing opportunities. My plan manager informed me I could use my funding to engage someone in this area to mentor and train me.

I was put in touch with Andrea, a small business marketing consultant. Her training definitely equipped me better, so when Libby asked me to work for InCharge in this area, I was ecstatic.  This training will also help me with future opportunities. It enhances my appeal to other organisations who would like to contract me. I cannot express how much economic participation means to me and other people with disabilities. We yearn to be productive.

Freedom in finding my own support workers

One of the greatest benefits I have from plan management is that it has helped me to recruit my own support workers. Initially I just had personal care for an hour each day to help me shower and dress. I had no idea I could use workers for accessing the community  and other things.

There has been great freedom in interviewing and choosing for myself. My worker is invaluable. She does things like takes me shopping, attends appointments with me, helps with filing and making calls because my speech is slurred, and acts like a personal assistant in work meetings. Having this assistance has allowed me to feel that I am a valued member in the community. I set the hours she works. I’m in control.

In my opinion we need to make the most of our plan. This will not only impact on us as individuals but on society as a whole. If we have support we can use our talents and skills to enhance society. Enjoy the journey!

Marianne Williamson wrote

“It is our light, not our darkness
That most frightens us.”

It’s time to let our light shine

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.’

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

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

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

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

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

Image of a record and the needle of a record player

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

We haven’t been partners

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

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

What does truly personalised support demand?

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

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

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

A story to start with

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

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

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

A sound basis for good partnership

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A-side

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

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

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

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

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

What is the benefit to the person?

What is the benefit to the family?

What is the benefit to the service?

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

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

B-side

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

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

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

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

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

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

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

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

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

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

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

A lit match ignites a row of other matches

Why are you charging for webinars?

We have a vision to amplify the voices of the real experts in self-directed support. That is, those individuals with disability and family members who are genuine innovators and have real life experience to share. We’re also direct stakeholders in the community and want to promote solutions that people have discovered work on a practical level.

Plus, we find individuals with disability and family members are often expected to give their valuable time and expertise for free as ‘the consumer case study’.

We don’t support the consumer case study model and wish to lead the charge in terms of making the change away from it.

Guest speakers are professional people who are drawing on their resources and knowledge to educate and share it. We think of it like a lesson at a community college but with really cool people who relate on a real level to your experience.

Our webinars are made possible by software that enables everyone to access it from the comfort of their own home or workplace. This software  will also enable those with hearing impairment to access the information live, rather than in post-production.

We understand and have experienced the frustration at the system, prejudice, confusion and lack of support. So have our guest speakers. That’s why we want to provide tangible supports and foster information sharing that helps people develop the structures they need for genuine control and autonomy.

As we work towards giving people the skills and supports they need to direct  their own lives, we want to do the same for InCharge. This begins by making some of the services we offer pay for themselves. Our focus is autonomy, empowerment, self determination, and positive, solution orientated thinking.  For our community and for InCharge.

We think the value of this kind of information is far cheaper than alternatives of self research, missing out through lack of knowledge, and more expensive ways of finding things out.

In addition, we want autonomy for our programs, and for them to be sustainable and not subject to the whims of government or those that might not really care as deeply as we all do about community benefit or impact. Instead we have chosen to reach out to the community to support the efforts of its members in finding sustainable ways to promote their experience and the solutions that work.

So by paying for a seminar, you don’t just get what information you need, you ensure the program is there for someone else to take advantage of in the future.

 We hope you choose to join our vision!

So do you get any funding?

InCharge or its partners in the Hunter NSW, like Mind the Gap: Disability Matters, are not currently funded by government or currently receiving philanthropic funding for its information programs.

We are creating a social enterprise model. This means that we re-invest income generated by our commercial activities back into developing the programs and supporting other innovations in the Australian disability community.

We do provide services for free. This includes our ever growing library of written and visual information available via our website and through email and social media. We also offer an amount of  workshops and individual consultation services.

OK sure, but I still have difficulty paying

We have places reserved for people in genuine need. If that is the case, please get in contact with us. We will ask you to either pay what you can, or request a waiver. We promise not to make you jump through hoops or answer any invasive questions. We’ll just trust that if you contact us, you really are facing genuine hardship. 

A lit match ignites a row of other matches

This is a follow-up piece to my blog titled Shadowlands: Institutions Big and Small and is a re-print of a newsletter article I wrote for Community Resource Unit. Great newsletter – grab a copy here.

Institutions come in all sizes, but they all begin with separation. Such separation shapes the identity of the people who live in them – not just how they are seen by others but also how they see themselves and their place in the world. My brother Matthew grew up in institutions. Living away from us firstly in a hostel and then in a number of group homes. That was a long time ago and much has changed since then. We have come a long way down a path that has helped us to create a real place of belonging for Matthew – in his own home and a community of his choosing. In this article I am exploring what it took from within us, for this change to occur. It started with a ‘leap of faith’.

I had an insightful experience recently around leaps. I needed to make a decision around something that felt emotionally hard and I was encouraged to try something different to my usual ‘think it out’ approach. Somebody close to me suggested I try a process to gain a different perspective to get me out of my head. This person has much experience helping others who have the same affliction.

The process was to externalise the decision, to help me move from my head to using my body and objects. I was asked to choose objects to represent the decisions or the problems as I saw them and then I had to place them wherever they made sense to me. Very interestingly, the decision I perceived most difficult was the one I placed closest to me. The person invited me to take a step into that place in order to feel what it was like to be there. I had perceived this step as an enormous leap, too hard to take safely really, but there it was, in front of me, only a footstep away.

I was then told to literally step in to this new space and yet I hesitated… a lot. I saw it right there in front of me. Strangely it was very scary to take the step but once I did, I knew as soon as I was there that it was the pathway I wanted. When I was ready this unfathomable leap became just a step.

What I think happened was that I stepped out of my thoughts and their supposed logic and into my gut and heart space. I felt the change I needed to make and this made all the difference. When I felt it, I couldn’t talk it away – there was no going back. All the difficulties still seemed to be there, in the path of this decision, but my perspective on them changed. They began to feel less like difficulties and more just things that may (or may not) happen and just a natural part of the process.

Building the stack

This was what it was like for my family in the build up to when we helped Matthew move into his own home. Some of my earliest memories from this time involved a lot of communication within my family about what was wrong with Matthew’s life. A lot of complaining, if you like. But we did it with each other as we shared the inkling that surely life has got to be better than this. During this time we were building our understanding of what it was we were not happy with. This was in the days before self-direction or personalised support and notions like ‘consumer governed’ or ‘family governed’ had not yet crossed our paths.

I also remember being present with other families at conferences and education forums as we grappled with the question of ‘what could be’. The conversations started with all the things that are wrong and moved over time to better ways of doing things to not only replace them, but to make them obsolete. Piece by piece we were building a vision of a better way.

For my family the vision we were building included Matthew having his own home and a crucial element of this was wanting Matthew to not have to face strangers any more. The pain of dropping him off at the group home to a stranger who didn’t know him or how to communicate with him or even take care of him was excruciating. The heart ache of that was too much. Imagining him at one moment being understood, nestled and loved, and the next moment being completely on his own amongst others, fending for himself, was awful.

Inside us at that stage were murmurings that things weren’t right, but we needed an external trigger that helped us see the possibilities. All we needed was a spark to ignite us and turn these imaginings into possibilities. We needed to be exposed to the possibility that somebody with a severe intellectual disability and autism who doesn’t speak could have their own home and that other people without disabilities would want to live with this person.

What happens for so many people and families is that they live in systems where others are traditionally given the role of problem-solver. This encourages families to dwell in problems and as they are encouraged to give over their power to others in the belief that those others are the ones who will create the solutions. It can also encourage them to dwell in waiting – waiting for the funding package, waiting for the next service. When people are waiting they are largely passive. It is the path of victimhood. We found this to be a bitter, soulless place to be.

Spark

When something else comes in there – I see it as ‘possibility’ – then there is the spark that can lead to a shift. I define possibility as something I have not yet imagined for myself and this is always most powerfully communicated through a peer – that is, seeing that it is possible for someone like me. ‘Possibility’ was the kind of external trigger we needed and once we had that our imaginations ran wild. We dared to imagine him being involved in his community because we saw that others were doing it. We dared to imagine him living with someone who didn’t have a disability because others had shown us it was possible.

‘Possibility’ has got little to do with centres or service providers or case managers or assessments. Ironically, ‘possibility’ dwells in ordinary things that make life great for all of us and makes us want to get up in the morning. These things are the possibilities for all people, even people who most challenge us.

Ignition

Once we were ignited by possibility, we needed to take ownership of that possibility; see it as not just an idea somebody else had made happen for themselves, but something that could fully take its own shape in Matthew’s life. We were the ones who needed to make this change. It was not the responsibility of anyone else – government, service providers, case-managers, Local Area Co-ordinators etc.

That is not to downplay the importance of collaborating with others. We had many genuine and valuable allies that helped us make our vision for Matthew possible. In fact having professionals on board helped us facilitate new breakthroughs. They were most useful when they were true allies. Allies because they had taken ownership of the part they could play in change. Their work was genuinely transformational and that’s what made them good.

I also remember inviting our long term family friend, Jane, to help us. She became Matthew’s first circle member when we all began talking together. I remember my mother’s tenacity and strength.

Fanning the fire

Once people are ignited then a fire is built. That’s when we see this idea of a fire burning in people’s lives so this is then about creating and tending to what you imagine. Moving from possibility to imagination to then creating that thing that you want. These are really the conditions for personal autonomy, for being in charge.

I remember when we had been overcome with the possibility of Matthew moving into his own home. I would wander the suburb where we imagined his home would be (a suburb close to my university where many of my friends and other young people lived). I would stand in front of lovely homes (not grand homes ) that I thought he would like to live in and picture him there.

It is important to continue to add fuel to your own fire by keeping in touch with peers and possibilities. The point is not to light the fire once, but to keep it burning and the more people attend to a fire the longer it is going to burn. We are thinking about this idea of sustainability, of keeping something going, of keeping something alive. For this you must do another potentially challenging thing. You must be with others, especially those that can lovingly challenge you, and you must nurture those relationships. If you do this work on your own you will have a harder job keeping that fire burning.

I know that Matthew’s life, with supportive networks (both paid and unpaid) around him, is something that helps other brothers and sisters to get involved and plan for the future. To feel more able to think about developing, building and sustaining these supports after their parents have died. If there aren’t these networks and all you can see is you, it starts to feel again like an enormous thing you will have some-day to ‘take on’ – but this is for another article!

Conclusion

The lessons I have shared from our experiences with Matthew are relevant both on a personal level but also one much broader. The process I have outlined above is relevant to people looking to create change in systems as well as in the lives of individuals with disability.

The families of today are taking these leaps and being ignited by the ‘possibilities’ shown by other families. They are grabbing the possibilities – stepping in to them, feeding them and making them their own. They are building networks to fan the fire.

My hope for the future is that we can assist each other, from the space of radical change, to grow new organisations, projects and enterprises. Working with people as they do this work for themselves, so that when they take this leap, it might not feel like a jump into the abyss.

This piece of writing came to life in conversation with my friend and mentor, Pam Morris, and a social enterprise mentor, Tracey Allen. Pam’s son moved out of Peat Island institution in NSW. She was the only parent who supported its closure at the time. It didn’t close but her son moved. 

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.