Category Archives: activevoice1

Hope crosses the political divide

On 17 March 2008 at around 8:30pm the Australian Federal Parliament secured bipartisan support from members of the two major political parties (Australian Labor Party and Australian Liberal Party) to support a motion by the Member for Gilmore, Mrs Joanna Gash, to improve the services, support and care for Australians with disabilities and their families/carers.

This is the motion:

That the House [of Representatives]:

Calls on the Australian Parliament to adopt a bipartisan approach to improving the provision and delivery of disability support and care to Australians living with severe and permanent disability, their families and/or their carers;

Considers that for too long the ball of responsibility for the funding and delivery of disability support and care has been kicked between Federal and State governments and that game has to end; and

Considers that the Federal Parliament must address the need for improved disability funding, support and services to see progress is continued beyond the individual terms of governments and is coordinated at such a level that intergovernmental disability service provision is clear, concise and indisputable.

Thank you to those politicians who initiated, debated and supported this motion in Parliament. Your support means much to many, many family carers of adults and children with disabilities.

The glaring discrepancy between the life choices of Australians in general, and those with a disability and their carers, is unbelievable. It is truly horrific that an affluent nation like Australia could choose to continue to be so oblivious to the circumstances its most vulnerable citizens are forced to endure.

As the motion implies, families caring for a person with a disability simply don’t care whether State, Federal or local politicians and government departments are responsible for support and service provision to people with disabilities and their carers.

We want national political recognition of the terrible problems that have arisen due to lack of government ownership of this important humanitarian and economic issue.

We want input into long-term, funded, targeted, functional solutions that meet our needs, not the agendas of a government department or disability advocate.

We trust that people with disabilities and their family carers will be invited to directly share their views, experiences, and proposed solutions to any Parliamentary groups, committees or drafting of legislation which may occur.

Baby steps, let’s keep it moving. Nothing will change unless we make it happen.


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School gets in the way of education

The link below is a newspaper report that a teenager with cerebral palsy is suing the Queensland State Government for discrimination after allegedly being told to avoid certain subjects at a Brisbane government high school due to his disability.,23739,23307111-3102,00.html

The newspaper reports that the student’s mother was allegedly told that her son’s English was only at a Year 3 level and “to go home and bring him up to a grade 4 level”. However, her son had just received a B for English in Year 10.

When the student moved to a private school, he performed better in English and German in his final year than previously. He wants to be a lawyer.

It seems the government education system judged this young man’s intellectual capacity based on his physical disability and cortical vision impairment. His disabilities make it hard for him to read, write or type because of being effectively blind during exams and being unable to control his arms.

So why couldn’t he use alternative methods to demonstrate his knowledge? Maybe provide oral assessment tasks or use voice recognition software to convert speech to text for assignments and assessments.

There is a huge variety of learning technology to let us step outside the tired old square of writing our opinions/reports on bits of paper. The State education exam markers are surely capable of assessing the academic or other value of a variety of work, even if the process did not include the physical act of writing words on paper?

As we have said before and will no doubt repeat many more times, the education systems need to stop incorrectly judging students’ learning abilities based on their medical diagnoses. Instead they should ask one simple question:

“What educational supports or tools does this student need to be able to learn?”.

And then provide them. It would enable many more students with disabilities to leave school with the skills to gain meaningful employment or undertake further study. And we do need more skilled workers, don’t we?

I guess this young man will excel in law. And we need him.


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An instinct for inclusion

Many families hold high hopes that today’s symbolic gesture of an apology by the Australian Parliament to the “Stolen Generation” of Aboriginal people who were forcibly removed from their families and communities will ignite an instinct for inclusion, not segregation, which will spill over to other marginalized groups in Australia. Like people with disabilities.

The parallels between indigenous Australians and families of children with disabilities are clear. Many share the same battles of social and educational exclusion, struggle for financial and emotional survival and the prospect of a bleak, segregated, unemployable future.

Senator Neville Bonner, Australia’s first indigenous politician said that change will come only when non-indigenous Australians take the time to listen to what indigenous Australians say they need. Let’s apply the same concept to people with disabilities, starting with education.

In Australia’s various state-based education systems there is still an unthinking acceptance by many apparently compassionate people of the practice of segregating children with various disabilities away from other children, by placing them in “special” schools and classes.

Families are still routinely told by educators that their children with disabilities need “special education” teachers who have “special” skills in teaching these “special needs” kids. But how does segregation from the rest of the world benefit children now, or prepare them to participate to the best of their ability in society in the future? And why do they need to be segregated from other children to be educated?

I suspect this first resort to segregation used to reflect an unspoken assumption that children with disabilities don’t deserve to be fully included in schools, and later in society. They are too different, too far outside the mainstream. We don’t value their diversity. We don’t recognize their humanity. It’s just too hard.

Increasingly some children with disabilities are included in some mainstream classes and leisure activities at school. But many are still educated in separate classrooms designated as “special” education. Yet special education was intended to be an array of tools to cater to the differing needs of a diversity of students, not a separate educational setting.

Families must have the right to choose their children’s educational setting – including a segregated setting – based on their child’s needs. But we also should demand evidence from educators if they suggest segregation, not inclusion.

We could ask: “What supports does my child need to actively engage in learning and socializing with her peers at school?” Instead of: “How can my child fit in to a mainstream school?”

Then the education systems must supply those supports, not leave teachers or students to struggle without them. It could be as simple as installing a hearing loop, supplying a laptop, or organizing and monitoring a friendship group. Or more complex support structures to maximize the learning potential of a child with multiple disabilities.

My son has a physical disability and can’t hold a pen to write. Does that mean he can’t learn? Well yes, if the school doesn’t acknowledge that he needs different learning tools. Radical tools🙂 like a laptop and maths software. Does his education require separation from his friends to maximize his learning? Personally I don’t see a connection between maths software and segregated classrooms. And while ramps will get him some places, they don’t actually educate him.

At school, like every other child, he needs teachers who take the time to get to know him and work with his learning style. He needs an education system which supplies the supports that enable him to participate actively in learning. And he needs to be part of big melting pot of diverse, dynamic kids. That’s called democracy.

May Australia’s apology to our indigenous people mark a turning point where we instinctively welcome diversity and never again assume we need to automatically segregate anyone who is “different”.


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The funny tummy family

By Activevoice1

Today is my son’s first day of high school and my daughter’s first day of her last year of high school. And my husband started a new job. We were a household of “funny tummies” this morning …

We arrived at high school without knowing who the aides were, if indeed they had been hired. Even worse, my big 12 year-old was in his manual wheelchair which horrified him, as with immaculate timing his power chair has died. At the end of the welcome assembly parents were politely dismissed and I asked if the school had uh you know actually hired any aides.

And lo and behold they had hired the two aides I requested when I helped interview for the role – a confident young woman with 4 brothers who my hormone-ridden son will fall in love with by the end of the day, and a fit, sporty bloke in his 40s who will not complain about OH&S crap. My son beamed, stood up (with my help) offered his hand to them both and welcomed them to “his” school. And he’d only been there 45 minutes.

Two diverse aides were was just one item on my list of requested supports, many of which the Ed Dept has never done before. Let’s see how the school goes with managing the technological supports and “left field” inclusion options which were recommended at my request.

So thank you God and principal, and Paul and Michael in the Ed Dept for listening to my views on what support at school kids with disability really need, and making it happen. I came home and cried tears of gratitude.

I remember when my daughter started high school: shy, anxious, knowing few other kids. I just wanted her to feel happy, safe and welcomed. That’s all I want for my son. He just needs different supports from my daughter because he can’t walk like she can. They’re both special, and equal.


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Ten +

By Activevoice1

Perhaps one gets even more direct 10+ years into “the journey”. Can you tell we don’t see medical professionals too often?

  1. You have a medical degree and you try to assess parts of my son’s body for 5 minutes once per year. I have a masters degree and 12 years x 24/7 experience with all the effects of my son’s brain injury. You need to listen to me as much as I will listen to you.
  2. I ask lots of questions. That’s how I learn. Don’t get defensive. Take the time to provide informed answers. I appreciate your informed input. I don’t expect you to have detailed knowledge of every therapy. Feel free to withold your uninformed opinion.
  3. I will take your opinion – and the opinions of others – into account when I try to decide the best all-round option for my son. His happiness is more important to me than the length of his Achilles tendons.
  4. I know there is no empirical research demonstrating the efficacy of this or that “alternative” therapy but my son doesn’t have the time to wait for someone to do the research. In the meantime I must go with my instinct based on anecdotal research. Yes it may be a waste of money, but I won’t know until I try
  5. And by the way, it is my money, not yours or the government’s. I will decide how to spend it to best serve my son’s interests. Your opinion on how to spend my money is not required.


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