"Funding will not keep people safe; only people can do that"
Rebecca Altaffer’s upbringing was influenced by her parents’ vision for her sister, Mena, who had multiple disabilities. This included regular Circle meetings held in her parents’ living room over two decades. These gatherings ingrained in Rebecca a strong appreciation for intentional community, commitment, and the significance of trusting relationships in safeguarding her sister’s future.
Rebecca’s presentation drew upon her late father Jeremy Ward’s writings on succession planning and her own experiences as a sibling. She shared insights into her family’s journey and their determination to safeguard the future of their loved ones.
Her message to other siblings: you’re already thinking about the future, even if it doesn’t look that way.
About Rebecca Altaffer
Rebecca Altaffer grew up in Brisbane, shaped by her parents’ vision for her sister Mena, who had multiple disabilities. Her family life included regular circle of support meetings held in their living room over two decades – an experience that gave Rebecca a deep appreciation for intentional community, commitment, and the power of trusting relationships in safeguarding her sister’s future.
Rebecca’s late father, Jeremy Ward, founded Pave the Way in 2002, an organisation dedicated to helping families plan for the future of their loved ones with disability. After Jeremy’s passing, Rebecca contributed to the Why Succession Planning Matters booklet – part of the Why It Matters series produced with the Community Resource Unit. Rebecca lives in Queensland and has two children of her own.
Transcription
Please note that the transcript provided may contain occasional errors.
It’s such a privilege to be here. Thank you so much for inviting me. I grew up in rooms filled with people like you, and it’s nice to be back, actually, talking about this stuff. It’s been a little while.
I’m going to be talking about the siblings’ perspective today. I feel very unqualified. But I do have lived experience, so I’ve got that. I’ll give you a few anecdotes today.
You know, I really feel like what I’m about to talk about is not my wisdom, but it is my absolute pleasure to pass on wisdom that I have gained through my family and through my lived experience. And I just want to talk about Jeremy without crying.
Jeremy was a brother and father of women with disabilities. He lived in Brisbane for those of you who don’t know Jeremy, and that’s where we grew up. His daughter Mena was one of his greatest teachers. He had many years experience in the law as it relates to people with disabilities and in working with organisations and for organisations with people with disabilities and families.
Jeremy was instrumental in the establishment of Queensland Advocacy Incorporated, where he worked for 10 years or so as an advocate, lawyer and director. And a little bit later on, Dad established Pave the Way in 2002, where he was manager and team leader for a number of years. During his time at Pave the Way, he wrote and presented many times on the topic of planning, essentially what we’re all talking about for these two days. He’d be really, really delighted that this is happening.
He was deeply committed to assisting other families to prepare for the future of their loved ones. And I really believe that he was driven with the belief that while human rights and the law are necessary, people will, as Wolfensberger said, die with their rights on. And he said that to me a number of times. So, you know, I grew up with that understanding.
In other words, people need people in order to be safe. And really, if I say nothing else, that’s what needs to be said.
You know, after my sister Mena died in 2009, my lovely mother, Margaret, went off and did a PhD, and my dad went off and wrote a book. So they got busy to move through into that next phase of that new ordinary life that they were forced to live in.
So why ‘Passing on the how’? When dad was sick, he got sick quite quickly, and we knew that he wouldn’t live very long. And I had been kind of prodding him to put his Pave The Way stuff down. And I was getting interested in webinars and online courses.
And I was saying, Dad, let’s video you, let’s write it down. And he was a little bit interested, but Dad being Dad, Jeremy being Jeremy, he was very much a people person, meaning he wanted to be talking face-to-face, not through an online course. Right? But it was in my mind.
I felt that something needed to be written. And as it was, Dad got sick, and he wasn’t going to live very long. And the Community Resource Unit (CRU) had a little bit of funding to put together some resources for families.
And after Dad died, one of the things that we did was put that, you know, all that wealth of information into a very small booklet. And we tried to get as much of the important stuff as possible. And I will say that this booklet, there’s three of them in the Why It Matters series, they all have additional resources on the website, so there’s kind of a few videos you can watch that have just been gathered. And so I’ll mention a couple of those. So, do go and check that out on the CRU website.
During the process, we held a panel, couple of panels actually with siblings and parents and other interested people. And we asked the question, “What keeps people safe?” And the majority of the people that we talked to were siblings. And there were a few messages that came up.
One of them was that some parents reported feeling guilty about passing on the load or whatever. Like there was guilt. There was talk of guilt. And I hear that often.
Some make assumptions that siblings will be there. And not all siblings are made the same. We’re all different. We all have our journeys to go on. And so there was a bit of talk about that. Some explicitly asked for help. Some assumed siblings will know what to do. And some provide a list of what to do, which is very helpful.
Many siblings report that they are unsure about how to do it. And so that was really interesting to me, and it got me thinking. And I will try to circle back to that.
So in the booklet, we came up with six actions, and I’ve called this ‘Passing on the how’.
“Give me six hours to chop down a tree, and I will spend the first four sharpening the axe” (Abraham Lincoln).
I’m going to read out the six actions, and then I’m going to talk to three of them.
So one, invite people in. Ensure that people you trust know your family member and know what is needed to support them into the future.
Two, give trusted people the information they need. Trusted people will need all the information necessary to succeed you as your family member’s primary support.
Three, support decision-making. Continue to practise supported decision-making with your family member, so they not only build their voice but others also learn to hear their preferences.
Four, plan. Work out what you want and the steps you will need to achieve it. Don’t wait for others.
Five, compile the necessary resources for the plan. Consider the resources you need to implement that plan in the long term and set up your will and estate accordingly. Yes.
Six, clarify what’s paid and unpaid. Of the many roles you play, determine which roles would be done by family or friends in your absence and what can be done by paid support.
I’m talking to three of those.
Action one, inviting people in. Funding will not keep people safe, only people can do that. He was a man of few words, my dad, but when he spoke, it was generally pretty poignant.
So I wanted to share an anecdote, what my brother and sister and I refer to as the Circle. And we’ve heard about Circles of Support. And I think we assumed that everyone had Circles. My brother talks about not knowing a life without a Circle.
And when I was thinking about the Circle, I thought about those Sunday nights or whatever night they were, my memory is predominantly Sunday nights, and Mum mentioned that they would put us to bed, and my memory is that the Circle meant that my family just, the weight that my family carried just lifted. And being quite a serious child, like many siblings, conscious of what our parents are going through, I really felt that.
And we also were allowed to watch videos. And my brother would give each of the Circle members a toy to have for their Circle meeting, and that was just a funny memory. We grew up with the Circle. The Circle is still in my life today, and I’m 42.
And when I talk about the Circle, I’m not talking about even specific people, I’m talking about the energy and the kind of general knowledge that they’re reliable people, there were reliable adults in our family’s life that were there who walked through our door and shared the love for our family that wasn’t necessarily reflected in the outside world. It’s something pretty special to grow up with in hindsight.
So mum suggested, when we were chatting, that we had a Circle for about two decades, on and off, beginning in 1989. And the first Circle really was about the mainstream school journey, getting my sister into mainstream school. And the idea was that Mena would go to the same school as her siblings, and that’s been talked about.
You know, as it turns out, that was unheard of in those days. And the school that I went to, the principal was not interested. One school in Brisbane did open up their hearts a tiny bit and welcome her in. It’s all in the book that Dad wrote.
But there was a lot of stuff around that, which I don’t need to tell you about because I’m sure you all understand it. My main memory from that time is hearing the sound of Les Misérables, Do You Hear the People Sing and the Circle members singing in chorus as they went out to, you know, battle.
And so that had its purpose, and I know that wasn’t the only reason that the Circle were there but that was sort of the theme that I remember.
Circle Two. So we move on, and you know, people changed. People came in and went a little. This one was more slightly different group of people, and Mena was leaving school.
And a story that we tell is that Mena had grown up with this idea that she could have the same kind of life as her brother and sister, and so she grew up with the vision. And the vision that was held for her, she was taking it on.
She went to a mainstream high school, she learned how to be a high school student, she learned how to swear, she was, her and I fought. I mean, she was a pain in the arse, honestly.
She decided that she wanted to move out, and Mum and Dad thought, well, you know, by the time she’s 25, you know, we’ll build up, we’ll get the Circle going, we’ll make it happen, and Mena decided no. “I’m moving out on my 19th birthday.” So that’s what happened. So the Circle made it happen, you know, in short, amongst other things.
You know, of course, there was leaving school and employment and all of the things that happen when the end of high school comes around.
And then the last Circle was about giving her the long-term planning that’s getting talked about here, and talking about safeguarding and who’s going to be there and passing on the how, really. And I’ll talk more about that.
The unplanned and incidental things that came from Mena’s Circle. I sort of thought about it as our Circle, but it really was Mena’s Circle. And why I say ‘our Circle’ is because it’s just a very reassuring thing to have people coming in and to, as I said, love us.
So they held the story, they held our family’s story, they held Mena’s story. And you know, when Mena died, they organised her funeral and her wake. And then you know, when I got married and when I gave birth, members of the Circle have written, you know, a number of job references for me and done me favours.
And when my dad got sick, they were there, members who had been in the Circle were there, giving me furniture and taking my boy to school when I moved back to Brisbane. And actually, a few of them came around, and we had a Circle for us, for mum and I, when dad was dying. So, I mean, this is what we do, kind of thing. And it was just happening on the ground.
How do you invite people in? So what I’m hearing is that people struggle to ask for help. I mean, I do in my life. So it’s no surprise.
People seem to get stuck asking for help, asking for people to come into their homes and gather around them. A Circle of Support is one structured way to build informal support. So I’m not here to say it’s the only way.
Something that came up throughout writing this booklet was that we can’t assume what people do or do not want to do. And there are different ways of going about asking people as well.
And include siblings. So, you know, we were included vicariously through osmosis at first. And then, and as time went on, we were asked to come to the Circle meetings, and then we were asked to contribute. And I’ll talk a bit about that as well.
And learn from others. I can’t talk from personal experience as a parent of someone with a disability, but I can say that many people have come through our family door asking for guidance.
I do that in my own personal life with people who are my mentors. I think there’s just so much wisdom out there. I do it now for friends who have children with disabilities, and the wisdom just keeps getting passed on, and nothing much has changed. It’s the same stuff. So that’s encouraging.
So we’ve talked about inviting people in. The other action I want to talk about is support to support decision-making. If we continue to practise supported decision-making with our family members, they not only build their voice, but others learn to hear their preferences.
You know, I was a bit confused about this term. I didn’t understand what supported decision-making was. And I now realise it’s because that’s what we kind of did in our family.
My brother and I, we laugh a bit about trying to sidle up to my sister to get her to do things or make decisions because we knew that mum and dad would listen to her in equal measure. And so being siblings, we’d say, look, you really want a video about horses, don’t you? But she was building the muscle. She was building the muscle.
And so more often than not, she would do the exact opposite of what I wanted her to do. She was good. She was good at that. And she voted John Howard, as you all heard, which was a big test of dad’s principles, I’m sure.
And an example of welcoming the sibling voice. There was a time when I had at least a couple of piercings, and my sister wanted a nose ring, and we discussed it at the Circle meeting, and as her sibling, I thought it was my duty to advocate for her, and we talked about it. I don’t remember all of the discourse. I remember being quite heated about it, and why shouldn’t she – that sort of thing. And Mum being like, there’s no way on earth she’s getting her nose pierced. And my memory is that that Circle held the space for us and helped us make that decision.
It wasn’t a decision that was best made by me or by Mena or by her mother or father. You know, it was made collectively. We knew what Mena wanted, but we had to think broadly.
So in this instance, and what we did, I think my memory is that she got a fake one. And so she could wear it, but she didn’t have to, you know, it didn’t have to be clean. There wasn’t a risk of infection, and it could be taken out for those important events because she, you know, her role was so important, was so important.
And whereas for me, it was a bit easier for me to get around and have the nose ring and have my roles in community. So just one example.
And so I’ll just talk a little bit about sibling subjectivity. You know, in reflecting on this, sibling relationships can be complex. I don’t think I need to tell anyone that.
And I think that, well, certainly if I talk from my experience, I couldn’t be objective a lot of the time, well, some of the time I could. And so, you know, I think of it as there’s a term going around saying we don’t know what we don’t know.
Well, as a sibling, I think I didn’t know what I did. I often don’t know what I do know. You know, like I carry certain things in my bones.
I know certain things, but I was unable to act them out or communicate them effectively because I didn’t need to yet. And also, you know, I was pretty unreliable as a young adult, much to my parents’ dismay. So I had some learning to do, and my brother was young and not particularly interested either.
So we needed other people as witnesses to kind of hold that space, and we had that. And I’m sure my parents hoped that we’d come to the party.
And you know, I’ve written here, don’t give up on your other children if they’re having a hard time being a sibling. Or if they’re, you know, flaking out or whatever, don’t give up on them. They’ve grown up, you know, we know our brother and sister and or family member so deeply. We just have some stuff to work out. So that’s just my little thing to say on the side.
Okay. Yeah. So my last point on that action is the support Circle again.
How can you, or that group of people that know your loved one with a disability, how can you increase the number of people who can hear and also discern their voice based on the principles and the vision? Yeah, I don’t need to go into what that means right now, but that’s what I found to be quite, that was part of the passing on the how for me.
It was one thing to listen to what my sister wanted, but my sister was mischievous. And she wanted things that weren’t, you know, we dreamed big for her, but wow, she wanted things. And so, you know, the Circle would help make things happen within the context of keeping her safe and supporting her role in the community.
Action four: plan. And this is the last action I’ll talk on. Work out what you want and the steps you will need to achieve it. Don’t wait for others.
Vision without action is a daydream. Action without vision is a nightmare.
Plans change. They will, but make them anyway.
We talked a bit about schooling. It was hard. The schools didn’t want her. The P&C gathered around to vote her out. I mean, there’s all sorts of stories about Mena being unwanted in the school system. But lots was learned, and the Circle were there.
And I also talked about leaving home on my 19th birthday. She went on and on and on about it.
And so, you know, we, as I said, the plan was that eventually she would leave home, but she was really clear. That was one example where that was her decision. And you know, we, I won’t say I made it, I had anything to do with it, but the Circle and my parents made that happen.
And markets, galleries and business suits. So when Mena was leaving school, mum and dad pulled us together and said, ” We’re buying a little business. We’re making recycled paper, handmade paper.” That’s what we did.
And we all had a little part to play. Mena worked in that business, and Dad made soap in his spare time. And Mena worked at the markets, and you know, it was good. She had independent employment. She had a valued role.
But what she really wanted to do was work in the city. And she wanted to be where she had seen her mother work at one point, and on the marble floors with a lanyard and a cappuccino. You know, that was much, much more her scene. And mum had been in labour-intensive market work in and out of the van selling this stuff, you know.
And Mena was like, I’d actually prefer to work in town. And long story short, it happened. She got to work for the Office of the Public Advocate and did, you know, the story is that she did sort of zoom on in in her wheelchair with a cappuccino and business clothes with a lanyard, where the other people with her had to get visitor tags.
And that was her to a T. I have never and probably will never work anywhere with marble floors.
And then planning for life until the end, the long-term planning that I mentioned in that third Circle. She wanted to go on a cruise. She wanted to go on a trip to Melbourne. So these were the parts of the planning that happened in those Circle sessions, and out of them, with people who knew her and could help her take those journeys.
And then it turned out that Mena was not going to live for a very long time. She was diagnosed with something completely out of left field, and she was given a short time to live. And so the planning changed.
It took a different, you know, it could have stopped. It could have stopped. And I think, you know, I can’t really talk for my parents, but I’m sure that they, at times, wanted it just to stop. And as a sibling, I at times wondered why we were talking about planning when we knew that Mena was dying.
But the Circle again. They said, ” We’re going to sit with you, and we’re going to sit with you through the sadness. And we’re going to hold this space, and we’re not going to stop planning because we’re going to give her a good life until the end.”
And that’s what we did together. And it was hard, and it was uncomfortable. It was so counter-cultural and probably quite counterintuitive as well. But it was an extraordinary time.
What is a plan? So a plan is more than wills and trusts and solving problems. It’s about making a vision reality today, ‘acting as if’. And it is a state of mind.
This is on behalf of my father, Jeremy. “Begin by considering the present.” He said that all the time. “Write a vision.”
As we prepare for the future, it’s important to consider the present, specifically how are we ensuring our family member with a disability is experiencing a fulfilling life now? What measures can we take to ensure their safety and security in the years to come? And we begin with that clear vision that, you know, gets talked about a lot.
For people with disabilities, imagining and describing their desired future is essential to planning. If you don’t envision a good valued life for your loved one, history tells us that others won’t do it either.
Be clear about what is not wanted for your family member. I’ve heard that a little bit today. Be clear about what is not wanted just as much as what is wanted.
And it may be that you hold a vision for that person until they can hold it for themself. Can you dare to dream on their behalf? Can you talk about it often? You know?
And just on that, like sometimes I’d say to my friends, “yeah, Mena’s, she’s moving out of home, and she’s got a job, and, you know, that’s what she’s doing.” And after a while, I’d, you know, I just get these reactions like, “What? Like how? Like what?”
And I just kind of stopped explaining it because how do I explain that? You know, I mean, sometimes I probably tried to explain it, but I got… What was happening was daring to dream. It was kind of radical, and I just didn’t really experience that at the time. I didn’t understand that.
But it’s an example of that, that’s what we talked about often, and it was just so.
And hold formal planning sessions. Dad did quite a bit of that with his Pave The Way work. He loved a planning session. Well, I don’t know if he loved a planning session, but he knew how important they were. And he planned for me as well, so I’ve sat in front of him with butcher’s paper a couple of times when I’ve been in distress about my life and what am I going to do next, and he’d say, ” Well, let’s plan it out. What’s your vision? What’s a good life for Rebecca?” You know, and so I got to feel that. And gosh, it’s quite extraordinary.
Be ready to let go when things change. I think that comes through practice, though. It’s not something I decide to get good at.
And then inviting siblings into planning… have the conversation. So again, when I was putting this together, I really got a sense that it was the conversations that needed to happen, that even conversations weren’t necessarily happening.
I can’t say if they are or not, but if I were to say two things, it would be “people keep people safe” and “start talking”. I’ve jumped ahead.
Two, include siblings and family members in decision-making conversations, even if you get into arguments. Just keep doing it.
Begin to share relevant information with them and start small. Give them little tasks. Ensure the person with a disability is not perceived as a burden, and try and drop expectations of the relationship that you want them to have as well.
So passing on the how to siblings, I would say… know that siblings are already thinking about their roles in the future, however uninterested they may be looking. Know that they’re thinking about it, and they’re probably feeling a little bit terrified. Siblings need information, preparation and mentoring.
And you know, in my experience, that can’t just come from my parents. I knew where to go if I needed it. Yeah. And a Circle or a Circle of Support can be a great source of reassurance for siblings, as it was for me and still is.
Above all, begin talking and keep talking.
And I’ll end on this. It’s my experience that families are a place of great sadness at times, confusion and even hurt.
However, they also carry the possibility for healing and momentum based on love and commitment and these principles. And the latter, I believe, is possible, and I know it’s possible, through a willingness just to keep talking.
That’s it.