This blog is being written on Alex's behalf by the people who love him.
Alex has multiple disabilities, but we see no reason why that should prevent him from having a fantastic life, full of exciting experiences and fulfilling relationships.
"LifeBiz", then, is the name we're giving to the 'business' of making sure Alex has a great life.
It's a 'business' in the sense that a great life for Alex won't happen by accident. It will need deliberate, carefully directed effort, because of the level of his disability and barriers in the way of people with disability enjoying the same kinds of things to which others without disability aspire.
LifeBiz is intended to mean lots of things.
It's an informal, changing network of people who have an interest in Alex's life.
It's a constantly evolving set of ideas about how to achieved valued roles and valued life outcomes for Alex.
We're hoping it will even be from time to time, a range of actual work or skill-based activities that assist Alex to live a life beyond the disability-specific options usually on offer for people with disabilities.
It will hopefully also take help us explore as yet unimagined new exciting opportunities for Alex.
Alex finishes school soon and, people with his level of disability usually go on to receive some funding support through the Community Participation Program, run by the Department of Ageing, Disability and Home Care (DADHC). We'll be hearing soon what funding level they think he's entitled to.
The vast majority of people, upon receiving their funding, register with a disability-specific day service or 'program', in many places because that's the only option available to them. They can effectively disappear from 'real life' and their actual community participation may be minimal. Most service provision is based on groups of people with disabilities engaging in activities not necessarily of their individual choice in the community but not necessarily really with community members and often in the ways/places the activities would typically occur.
We do not believe that option would not allow us to pursue the life we want for Alex.
DADHC is currently running a 'demonstration project' they're calling a 'self-managed' option. It's based on a family governance model, which would allow us much more flexibility and choice. We will hopefully be able to help Alex do the things he'd choose for himself, have him experience 'real life' and participate in a real and valued way in his community... all the things Alex's 'LifeBiz' has as its goals.
Alex has multiple disabilities, but we see no reason why that should prevent him from having a fantastic life, full of exciting experiences and fulfilling relationships.
"LifeBiz", then, is the name we're giving to the 'business' of making sure Alex has a great life.
It's a 'business' in the sense that a great life for Alex won't happen by accident. It will need deliberate, carefully directed effort, because of the level of his disability and barriers in the way of people with disability enjoying the same kinds of things to which others without disability aspire.
LifeBiz is intended to mean lots of things.
It's an informal, changing network of people who have an interest in Alex's life.
It's a constantly evolving set of ideas about how to achieved valued roles and valued life outcomes for Alex.
We're hoping it will even be from time to time, a range of actual work or skill-based activities that assist Alex to live a life beyond the disability-specific options usually on offer for people with disabilities.
It will hopefully also take help us explore as yet unimagined new exciting opportunities for Alex.
Alex finishes school soon and, people with his level of disability usually go on to receive some funding support through the Community Participation Program, run by the Department of Ageing, Disability and Home Care (DADHC). We'll be hearing soon what funding level they think he's entitled to.
The vast majority of people, upon receiving their funding, register with a disability-specific day service or 'program', in many places because that's the only option available to them. They can effectively disappear from 'real life' and their actual community participation may be minimal. Most service provision is based on groups of people with disabilities engaging in activities not necessarily of their individual choice in the community but not necessarily really with community members and often in the ways/places the activities would typically occur.
We do not believe that option would not allow us to pursue the life we want for Alex.
DADHC is currently running a 'demonstration project' they're calling a 'self-managed' option. It's based on a family governance model, which would allow us much more flexibility and choice. We will hopefully be able to help Alex do the things he'd choose for himself, have him experience 'real life' and participate in a real and valued way in his community... all the things Alex's 'LifeBiz' has as its goals.
We invite readers of Alex's blog to share with us in this endeavour of imagining and realising wonderful things for this wonderful young man.
