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

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

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

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

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

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

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

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

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

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

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

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

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

Better Caring – next page

Hireup – page 3

My Supports – page 4

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

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.

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

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

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

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

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

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

________________________

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

________________________

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

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

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

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

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

Focussing on sustainability

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

Promoting active citizenry

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

Addressing adaptive barriers to change

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

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

Developing rich relationships

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

Welcoming environments

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

Autonomy and control

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

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

I look forward to building and seeking these responses.

Libby

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.

a group brainstorms with a person with disability

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

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

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

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

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

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

A self managing team

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

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

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

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

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

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

The key components

The components of a self managing team are:

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

The first steps

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

The most important parts of the set-up are:

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

The benefits

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

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

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

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

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

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

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

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

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

Image of a record and the needle of a record player

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

We haven’t been partners

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

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

What does truly personalised support demand?

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

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

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

A story to start with

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

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

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

A sound basis for good partnership

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A-side

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

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

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

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

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

What is the benefit to the person?

What is the benefit to the family?

What is the benefit to the service?

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

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

B-side

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

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

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

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

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

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

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

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

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

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

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

A man with friends and support workers

Our previous blog on this issue started ‘at the end’ or on tips to get clear on the purpose of paid support. We recommended this as a first step in successful recruitment. For starters, working out purpose can then really help to nail the characteristics you are looking for in people. Once you know the kind of people you are looking for, then it is far easier to figure out where to look for them. After that, you can think about the best methods to reach those people.

Put together, this is a 4 step process of WHAT (purpose) WHO (characteristics), WHERE and HOW (methods to recruit)

So in this piece we will focus on Characteristics. That is, being clear about WHO it is you are looking for.

Start by thinking about the importance to you of any, or all of these categories below.

What makes the person tick – personal qualities, values and vision

Many people say this is the most important thing to think through. This is about the kind of person you are looking for. It is always better when the person shares your vision. So what are your values and vision?

Skills & attributes

These are abilities that show the person can apply knowledge in a practical way to get something done. This could include work skills they have learned elsewhere that they can use in this job. These might be things such as leadership, communication, problem solving, initiative & enterprise, team work, planning & organising.

Technical and professional skills

What do you hope they come with?

Do professional skills and qualifications matter to the role?

What training do you want them to undertake?

Shared interests and hobbies

Depending on the purpose of the role, shared interest might be a definite pre-requisite. No point wanting to get involved in your local indie music scene, for example, and not seeking someone who is going to lap that up and know what to do and how to be in that context.

Even if the purpose of the role is not as specific as this, looking for commonality of interest makes life easier. Liking the people who support you is very important.

Click here to read how Carolyn Campbell-McLean creates her dream team.

 Matching purpose and characteristics in a (real life) example

Robbie is 27 and about to move into his own apartment in the city for the first time. The apartment is being rented from an extended family member who wanted to help by offering this opportunity. The vision is for Robbie to have a housemate. The apartment has lots of great qualities and some down sides. For example, while it is two bedroom it is quite small. Robbie and his immediate family decided that they couldn’t let the opportunity go, but they are worried about whether living with someone will be sustainable. This is also because while much of what support Robbie needs is known, a lot is also to be discovered. Robbie will have some additional paid support workers at different times, but the housemate role is really crucial.

Robbie is a conscientious man who likes to please people. He is a gentleman. He has an incredible memory for people, places, events and television shows. He also loves classical music, old movies, walking, trains and boats (especially old ones). He works, attends a day program and also volunteers. He can feel quite anxious at times, although he doesn’t want to be, and benefits from patience, empathy, people who see his potential beyond this and provide guidance in times when he is struggling to see past the anxiety.

Robbie’s support team decided to create a 6 month paid live-in role. The purpose of the role is to

• Help Robbie adjust and provide companionship – enjoying time together and looking out for each other
• Create an inviting home – joining with Robbie to create a pleasant, and comfortable home together, sharing meals, thinking about ensuring that Robbie’s day-to-day home life is prepared and planned for with tasks such as food and shopping and ensuring that the home is well cared for
• Provide mentoring in some areas of home life
• Build understanding of the longer term support structure – join with his family and support crew understand what kind of support Robbie needs and when across the week. In the longer term, when might a housemate have a role, when family and friends and when might paid support workers have a role?
• Building understanding of the future housemate role – join with his family and support crew understand what a longer term (subsidised) housemate role might look like. Contribute to answer this question: ‘how will it work best for a housemate and Robbie ongoing?’

What do you think are the values, qualities, skills and shared interests needed?

What kind of person would be good in this role? Try and visualise this person.

Now you can start to think about WHERE you might find such a person and what methods you might use to attract them (HOW).

Want to learn more? Click here to join our next online session on December 9th to learn successful recruitment strategies from people in the know!

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