The secrets of fabulous self-direction

Self-direction requires families to hold what Margaret calls “family business” – the vision, the plan, the story, the relationships – and never hand it over.

Her five secrets cover the full arc: step up, include others across generations, accept that life is messy, embrace change, and stay joyful while doing serious work.

About Margaret Ward

Margaret Ward raised her daughter, Mena, who had multiple disabilities, to believe she could have a life like her brother and sister.

In her thirty short years, Mena went to a regular school, worked in open employment and lived in her own home for eleven years – showing others what was possible with a strong vision and a family willing to break with tradition. As part of Mena’s legacy, Margaret worked with over fifty families to develop the Seven Steps to Self-Direction, now used across Australia.

Margaret is highly regarded and known for her visionary leadership.

Transcript

Please be aware that this transcript may contain some errors.

Good morning.

We all want fabulous skin, and we’re bombarded with advertisements for amazing products that are going to do miracles… and in seven days… and will promise eternal youth as well. You just need to spend enough time and money, and you’re done. We also know that if we’re reasonably sensible, we hydrate, we exercise, eat and sleep well, use sunscreen, and find joy from within. We’ll do pretty well without breaking the bank, and we’ll all end up with the inevitable wrinkles anyway.

Similarly, there are many services and individuals who promise the world… yet you’re here today because of self-direction, and that is you taking charge.

And it is this self-direction that is likely to give your family the best deal.

So with others, I’ve written this resource, which was shaped by many people with disability through a study through Griffith University, their families and committed friends, and their support workers. These folk have been part of self-direction for many years prior to the NDIS, so self-direction has been going on for about 30 years. And in Australia, in one way or another, in sporadic and small examples. But their knowledge has been very helpful.

This is the resource, that’s printed by Resourcing Inclusive Communities. And you can get it on that website.

So I’m not going to talk about that today. Some of you have been to my workshops about it. It’s got seven steps. It’s got beautiful pictures. And it actually convinces you that it’s all very easy. Those who want to shoot me down now can.

However, there’s more I want to say. And this is what I’m going to do today. I’m going to call them secrets that I want to share with you about self-direction. And these secrets came from these families and from our personal experience as a family.

Secret one

You’re going to have to step up. And I’ve got no softer way to say that. If you’re sitting on the fence and you think, oh, maybe the service could do this for me, or I’m not bright enough or too busy or, you know, I haven’t got confidence, I don’t want to hear it, because if you don’t step up with your heart and soul into self-direction, you will not do this work.

So, fabulous self-direction takes time, effort, and practice. No softer way of saying it. We may not be used to directing people, being clear and assertive, dealing with conflict, solving problems, managing budgets, and dealing with bureaucracies. But you can learn. And I have seen the most timid people learn and do a fabulous job. We can be deliberate in our thinking, and we can be clear about what we want and don’t want. That’s easy, and it just takes a bit of effort.

I remember doing it with Jeremy in front of a fire with a bottle of red wine. It came out so easily once we stopped to do that work. And this is the starting point. This is hard work, but it’s good work, and it’s good work because there is no better way to build a rich and full life with all its complexities for your family member.

I cannot, in my many years, find another way. Self-direction allows for spontaneity, change, growth, and the interweaving of formal and informal supports, and for the person to be truly themselves. No service can do this work on its own, plain and simple.

So, I want to talk about family business. The Homes West parents were part of naming this idea of ‘family business’ and ‘service business’.

So, what is family business? And that is the business that only families and committed friends can do. It’s building the vision and safeguarding the vision and the plan. If you hand that over, you’re done. Ensuring the presence of family and allies, and what happens to you if a service is in charge of that business?

Health, well-being, and quality of life. This is a family business; that person’s health, well-being, and quality of life are the responsibility of family and friends.

Love and friendship: Services can be friendly, but they can never be your friends, and they cannot love you.

Deciding where, how, and with whom to live… once that is in the hands of a service, you’re done.

And deciding who will provide support. Actually, who comes in, who holds you, who changes you, who bathes you. That is the responsibility of the family and friends to make that decision.

Safeguarding the person’s story. With a turnover of between 18 months and two years for staff these days – in particular, in state government services – people’s stories get lost very quickly. This is the domain of families to keep and safeguard and celebrate that story.

And financial security; to be planning for financial security so that that person has enough money to do the things they want to do. That is the responsibility. That is family business.

The Homes West Families also defined ‘service business’. So, if you’ve got family business, you’ve also got to be very clear about what is service business.

And service business is getting to know the person well. Respecting the vision and plan, not disregarding it or having one of their own. It’s respecting the one that the families, with the person, have decided on.

Supporting familial and natural relationships and networks. Not holding those families at a distance or undermining them, even if they’re difficult.

Provide reliable and ethical paid support as directed through family business.

And thinking creatively about how things can be done. People and services are not dumb. They’ve got lots of creative ideas. So not to be just passive, but to contribute those to assist the family to think things through.

So once these are clearly articulated and understood and accepted, as those three are important, articulated, understood and accepted, then a respectful or right relationship is possible. And out of that, then shared business can happen so families can hand over particular tasks, and services can work with families to make the job easier. And that’s built on trust.

So that’s what self-direction is about. It’s not about a service doing nothing, just being a passive recipient of funds and then finding staff. They have a very active role. And when those two roles or those two lots of business are done well, then you get a trust and a solid relationship in which really good things can happen.

Now back to families. When family business is left undone, services are obliged to fill the vacuum as best they can. As much as they try, they will do it badly, because love and friendship and all that flows from them cannot be bought through paid service.

Services have competing masters, and without direction by the person and their family, systems will ultimately serve themselves over those they are there to serve.

I know no service that hasn’t happened to. And clawing back, clawing back family business back from a service, once it has been handed over, is very difficult. For those young families here, never let it go.

Secret two

Include others. Family business does not just mean mum and dad, much less just mum.

It needs to be more people because this work cannot be sustained in the long term by one person alone. Part of the crucial work will be inviting in and bringing others along with us and our families.

There are many ways of doing this, and I want to hear no excuses. No excuses. Sorry, I’m a tough old bird on this one.

This starts early and continues through a lifetime of millions of small and thoughtful ways. We get strategic later, but it’s a way of thinking that our family member is a wonderful soul and we want people to know him or her. We want to bring people in, and we can do it in all sorts of ways every day through school connections, family networks, and even people who are far away.

My daughter had a wonderful godmother who was just so much in her life, but she lived in Sydney and may have seen her half a dozen times throughout her life.

Bringing in others cannot be delayed because we cannot see the future. Any sharing is better than none. Start now. Write things down. Write information down is even more important.

So the secret is to share the journey from the beginning. Doable, simple tasks at first, then more strategically and broadly as life goes on. As I said, it’s a way of thinking, and it’s counterintuitive to Australian families as a norm.

We do tend to be isolated and insular in our family business. I’m asking you to change that and to reach out, as hard as it may be.

Think three generations: Mum, dad, brothers and sisters, and we’ll hear more about brothers and sisters today. And cousins. And then their children, who may at this point be toddlers. These youngsters might need to step up in time to direct the aged care services of the future, which are even more problematic than the NDIS.

So, these folk don’t need to know every detail of self-direction, but they do need to be part of the action. First, understanding the vision by osmosis, you know what we are all working for… What is negotiable and non-negotiable? What conversations will never be had in the family, like institutions or segregation? That’s just the way it is.

If the toddlers know that, at this high, they’ll know it at this high. Including understanding important relationships… so who’s who in the zoo? You know, who are the close people? Who are the friends of our family member?

And then later on, they’ll need to know about safeguarding the personal history, the home, the medical and financial information, and finally, how it all works together.

So it’s a matter of first, osmosis, and then it becomes a strategic and intentional process.

So, fabulous self-direction has a succession plan. It’s in place from the start, yesterday.

Secret number three

Life is messy. I do not need to tell you that life’s messy and that God laughs at the plans we make. This doesn’t let you off the hook, okay? I know praying to God does help, but plan anyway.

Sometimes things go very wrong, and we can easily admonish ourselves, and consider that we’ve failed and throw it in. Throw in the towel.

But I’m telling you not to. I’m asking you not to. But there are things we can do that soften the landing when things go bad.

So self-direction is getting it right most of the time, not all of the time, just most of the time. Maggie Dent talks about 80% in motherhood. I think we can take that percentage as a pretty good one.

The other 20% of the time may need some new strategies, a bottle of whiskey, a new mobile phone that didn’t work at the time, unplanned drop-in visits, regular meetings, and some serious debriefing.

Letting go of perfection allows for risks to be taken. For room for spontaneity. Lessons to be learned and even more trust to be built. There’s nothing like a bit of a mea culpa, a big debrief, a few tears for us to start to really build up good relationships with services and service workers.

So with every bad time, there is a silver lining and a growth.

We can learn to manage payments, rosters, meetings from practically anywhere, on the top of a mountain or out on our yacht. We can also learn to be discerning about people, and we can learn to trust people, which may be difficult for some people to start. But we can learn to trust.

Getting smart about choosing good support workers and good other people in our lives really is… It takes time and takes experience, and we’ve all employed some, you know, ditz as a support worker and realised that we’ve made a terrible mistake. Or someone comes into our life and says they’re going to be a friend, and they’re not.

We’ve all had those experiences, and we can learn. But families learn best on the job. You know, so it’s always good to talk to some older families about these things because they can wipe up your tears and help you get back on your horse.

Once we’ve bought the self-direction ticket, we’re on a ride of our lives. Being responsive to our family member’s vision and plan could lead us to the most unimagined places. Let me tell you, one day, with a bottle of wine on that one.

Secret number four is embracing change.

So fabulous self-direction embraces change and is open to opportunities because they’re there and they will come. We all like stability and predictability, but it’s simply – if you’re going to do self-direction – it’s simply easier not to. Be ready for the ride!

Being open to opportunities allows the adventure to begin and paves the way for a very interesting journey.

Sad and bad things can also happen, but if we’re open to change, it’s easier to change direction and try another way and keep going. So even if things are good or bad, being open to change is a very useful skill.

Secret number five

Lighten up and get serious. So self-direction is serious. It’s lifelong work, as is with skincare.

We can be fun-loving and mischievous at the same time. I love the word ‘mischievous’. Whenever you see someone serious from the NDIS come along… think mischievous.

It is finding the balance between being accountable and organised, and keeping front and centre the beautiful soul that is your family member. It is doing the hard work, knowing that in your hearts, it is the best chance they have for a rich and full life.

So, when we’re pissed off with it all… This is perhaps the time to step back and test your succession plan. I did have a friend who used to call it “Play dead”. That’s a little confronting. Just say ‘test your succession plan.”

And focus on the achievements, even if they are small. It is time to affirm what is important and what is not, and what is working well and what is not. This sometimes takes a bit of space, and a little holiday is good for that.

Positive people attract positive people, and we want them lining up as part of this adventure.

Paid support workers tend to stick around when their values align with what is happening in their work, and they can find real joy in their work.

And we never had problems finding people for our Circle. We had people disappointed they weren’t invited on because it was such a positive story.

Fabulous self-direction is serious and light-hearted at the same time.

So, in summary, fabulous self-direction requires us to step up, committed to the task, knowing that the hard work is the best chance for our family members to have a rich and full life.

We need to do our family business well, and safeguard it, protect it and never let it go. We need to be selfless in understanding in taking on this task; we are ourselves frail, vulnerable and will die. Bringing others along on the journey is both critical and responsible.

We need to take the long view by including even our children’s children.

When life gets hard, we can choose to work smarter, focus on the achievements, and stay positive like no other time in history. And I’m serious on this. Self-direction provides our family members the opportunity to live their best lives now and in the future.

Thank you.