Photo of Lauren Hislop

Loving what you are reading on our Facebook page? We’re thrilled to have Lauren on the team and hope to bring you lots more fantastic and useful information via our website and social media.

Let’s hear more about her!

“Hi I’m Lauren. I’m extremely passionate about inclusion and human rights. I have cerebral palsy. I don’t think having a disability is a big deal. Some people have red hair, some people have a disability. It’s just a fact of life. Unfortunately often society doesn’t view disability in this way.

My disability has certainly not prevented me from achieving my goals. I’m a social researcher with three university degrees (I collect degrees as other people collect stamps).

I am intelligent and extremely humble [not quite]. I collect uni degrees like people collect stamps! I love reading. I even read expiration dates when I’m desperate. I live with my partner. I love theatre and art galleries. I love spending time with my partner, family and friends. I love discussing ‘taboo’ topics such as politics. I also have a very unhealthy love of tea.

I am also an NDIS participant and live and work in the Hunter NSW site. I have had involvement with helping people with disabilities get connected and informed in this region.

As you can tell I have an ‘ordinary life’. However, without the right kind of support this “ordinary life” would not be possible. I’ve confronted challenges to obtain this ‘ordinary life’. I’m still perplexed by people without a disability who are surprised when I tell them about my life. They are surprised that my life is seemingly ‘normal’. This illustrates an ingrained notion that people with disabilities cannot achieve an ‘ordinary life’.

Some people have perceived my disability as a deficit. I don’t see my disability in this light. I’m a strong proponent of the social model of disability. I believe that society ‘disables’ people due to prohibiting them from accessing the community.

It’s sad that in 2016 some people are still prevented from living how they choose. However there are many people achieving this. We should share our stories with each other. If we embark on this journey together, hopefully everyone will be able to achieve an ‘ordinary way of life.’ I believe this is what InCharge is about: Helping people to live how they choose and to live an ‘ordinary life.’

Jo had to go back in time to a time and an activity that she remembered gave Emma joy. She experimented and bought a shredder. Emma now has a business – Master Shredder - with 4 business clients including a credit union and solictors’ offices. She can now see a reason to communicate and is wanting to go out on her own and with friends.

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.

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

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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

Photo of Margaret Ward

Margaret Ward has a lot of practical, heartfelt and straight-talking wisdom to share.

Originally a practicing architect in housing, she became a parent of a person with disability and as a consequence, has had a varied career as a policy writer, service provider and advocate in the areas of social inclusion, housing and disability.

She was a founding family member of Homes West Association which has supported user-direction for over twenty years. She is currently Research Fellow at the School of Human Services and Social Work, Griffith University in Brisbane, Australia. She is currently convenor of the Australian Network for Universal Housing Design.

Dr Ward received the Public Service Medal for her work on housing for people with disability within the Queensland Government.

So much has been written and documented about the nature of home. Home is where it all starts and where it all ends. It is where we rest and renew. It is essential for our wellbeing and should be a place where we feel rock-solid safe. Home is as various as the people we know. And so it should be for people with disability. Everyone needs a home. This has made up a great part of my life and work for the last 30 years. My daughter, Mena, was able to live, love and die in her own home. But this was not something that the system made easy for her. This was why vision was so important – we just knew what was needed and we weren’t deterred.

When I was asked to be a guest speaker on this webinar, my initial response was “Well, it is grim and I’ll need to say this.” But I agreed because I also feel there are things that could be done. It’s not right, yes. It doesn’t replace systemic change. But, for those of us looking for some things we might be able to do, to keep us sustained and hopeful, I wanted to contribute some of my experience.

The NDIS offers you greater choice and control over where, how and with whom you live. But what can you do to find a home of your own?

Where to start

The first place to start is to see how other people find a place and make it their home. Despite the barriers, it is still important to name YOUR home to the detail. What will YOUR home look like and be? I’ve seen the difference this can make, in taking advantage of an opportunity that becomes available. I’ve seen families who have done this visioning work well, able to then mould and safeguard opportunities. Others who didn’t have ended up, years later, feeling stuck in vacancy-managed group living unable to undo the threads for a more individualised arrangement.

Next, is perhaps a mindset that is helpful. To get started with something bearing in mind that your first place is not likely to be your last—people change their housing as their needs and priorities change. However, better choices are made when you have a vision and a plan. Actually we need to be planning as early as possible now.

You can try different ways of living to think about what support you might need, who might be a good house-mate and what sort of place suits you.

Why not think about house-sitting for a friend, go on a holiday without the family, rent a serviced apartment for a few weeks.

The NDIS

The NDIS is another opportunity to help get you closer. Let’s talk about what might be possible to do with resources through the scheme.

Five ideas to action right now

I argue that the National Disability Insurance Agency could take five practical steps to address the housing needs of most people with disability.

1. It could advocate for a sustainable social housing system
2. It could support the re-establishment of the National Rental Affordability Scheme and its commitment to equitable physical and financial access in future funding rounds
3. It could expand home purchase assistance, especially shared-equity opportunities
4. The NDIA has the opportunity to assure timely access and quality of home modification service 
5. The NDIA can influence the supply of accessible housing by calling for regulation of minimum access features in mainstream housing in the National Construction Code

On this webinar I will explore these and other ideas to help you decide where, how and with whom you want to live. It will then consider the various housing options that are currently available and what are some of the pitfalls.

Everyone deserves to have a place they can call home—you can too.

Join Margaret for our webinar on 18th August 2015.

Click here to register!

Their final two rounds of funding are also coming up. Find out more by clicking here.

The program will run from April to December 2015.

Click here for the expression of interest form.

My presentation is a bit of a cautionary tale based on my family and professional experience: individuals and families will continue to face wounding experiences even as we direct our own services. How can we develop perspective on the impacts of this in order to create high quality supports?

Check out the abstract and more information about the conference.