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Sally and Jack and the PM! Print
Written by Tim West    Monday, 19 September 2011

In August 2011, Jackson and Sally visited Parliament House as part of a delegation of the National Disability and Carers Alliance to meet with Prime Minister Julia Gillard, Health Minister Nicola Roxon and all the state Premiers and Chief Ministers. They delivered copies of the final Productivity Commission report into the National Disability Insurance Scheme. Sally was able to talk to all politicians present and describe to them the urgency of the NDIS.

Sally Richard, Prime Minister Julia Gillard and Jackson West

sally-richards-julia-gillard-jackson-west-2

 
Sally's lead editorial in The Canberra Times Print
Written by Tim West    Thursday, 07 July 2011

On June 24, the Canberra Times published an editorial titled "Our moral obligation to vulnerable, marginalised" by Sally Richards. You can read it below!

Our moral obligation to vulnerable, marginalised

By Sally Richards, 24 Jun, 2011.

According to the Productivity Commission's draft report on disability care and support, the disability service system in Australia is ''inequitable, underfunded''. It is also unsustainable.
As Simon McKeon, Australian of the Year, states in an ABC Ramp Up article on May 25, ''Let's not mince words there is a national crisis confronting disability in Australia. It is nothing new sadly, crisis is a permanent setting.''
On May 17, 2010, the Productivity Commission published an issues paper into the long-term care and support of people with a disability. Australians were invited to make written submissions and to appear at public hearings held later that year. There have been 956 submissions.
The draft report was released in February this year with an opportunity for further submissions followed by public hearings. The final report is due on July 31.
One of the draft report's recommendations is ''To provide individually tailored taxpayer-funded support, which should be targeted at the subset of people with disabilities who are assessed as needing such support.''
This is called the National Disability Insurance Scheme (NDIS) and it is about being equitable and giving people with disabilities the resources and the opportunity to have similar lives to other Australians and to realise their full potential.
The cost is estimated at $6.3billion a year and the report favours the Australian Government directing payments from consolidated revenue into a National Disability Insurance Premium Fund.
Most Australians assume that Australia being what it is a wealthy, prosperous, nation people with disabilities already get the support they need.
However, if you believe this, then you are sadly mistaken. We are a first-world nation with a third-world disability system. Too often people who have a disability have lives that are diminished, devalued, marginalised, disrespected and constrained. Many have lives of desperation, despair and grief. They cannot afford basic equipment, necessary aides or vital support for personal care let alone for things to improve their quality of life such as support to work or go outside their home.
Bill Shorten, at the national Disability Congress in Melbourne this year, described them as being exiles in their own country.
But it doesn't have to be like that. Properly supported, people with disabilities can work, live independently, love, have quality lives and contribute to their community and to society as a whole. Too often it is the very lack of support that forces people with disabilities to be seen as passive absorbers of time, energy, resources and funding.
The key point of the NDIS is that this is a scheme for all Australians, not just those living with a disability. Disability is not something that happens to other people. It happens to our children, mothers, fathers, partners, sisters and brothers. It happens to our best friends. It happens to people we love. It happens to us.
My son Jackson West has just spent several weeks in the rehabilitation ward of Canberra Hospital. I had the opportunity to witness the kinds of disability that people acquire all kinds of people; men, women, elderly, middle-aged, young; some in the prime of life. Every person who is admitted to that ward has had an unexpected, unwanted and life-changing illness or accident. None of them, the day before they were admitted to hospital, expected that they would be there or that they could be permanently disabled.
In the weeks Jackson was an inpatient, I saw probably four or five people walk out of there. The rest of them are likely to have some degree of permanent disability and will rely on aids, equipment, paid and unpaid support for the rest of their lives. Some will lose their independence entirely, others will hang on to a scrap. All will be affected forever, as will their families and friends.
Whether the disability is genetic or acquired is not the point here. What is the point is that all of us have a responsibility to provide for those Australians who are vulnerable or marginalised or need support to live meaningful lives because they have a disability.
If we as a nation and a people say that all life is sacred; that all life is valuable; that any life can be saved with the modern marvels of scientific medicine, then we as a nation and as a people have a moral obligation to support the people who have or acquire a disability. It's not good enough to say, ''We have saved your life. Now you go home and deal with it and deal with it for ever and don't expect the assistance you need to have the life you are entitled to.'' This is not the way for a civilised country to behave. It is immoral, unacceptable and deeply unfair. Not to mention hypocritical.
John Maynard Keynes said ''there is nothing a government hates more than to be well informed for it makes the process of arriving at decisions much more complicated and difficult''.
Through the Productivity Commission's draft report on the long-term care and support of people with a disability, the Government is now well informed about disability and the enormous unmet need. It therefore needs to now make the decision to support people with disabilities and their families and carers into the future through a National Disability Insurance Scheme.
We will all be better off.
According to the Productivity Commission's draft report on disability care and support, the disability service system in Australia is ''inequitable and underfunded''. It is also unsustainable.

As Simon McKeon, Australian of the Year, states in an ABC Ramp Up article on May 25, ''Let's not mince words; there is a national crisis confronting disability in Australia. It is nothing new. Sadly, crisis is a permanent setting.''

On May 17, 2010, the Productivity Commission published an issues paper into the long-term care and support of people with a disability. Australians were invited to make written submissions and to appear at public hearings held later that year. There have been 956 submissions.

The draft report was released in February this year with an opportunity for further submissions followed by public hearings. The final report is due on July 31.

One of the draft report's recommendations is ''To provide individually tailored taxpayer-funded support, which should be targeted at the subset of people with disabilities who are assessed as needing such support.''

This is called the National Disability Insurance Scheme (NDIS) and it is about being equitable and giving people with disabilities the resources and the opportunity to have similar lives to other Australians and to realise their full potential.

The cost is estimated at $6.3billion a year and the report favours the Australian Government directing payments from consolidated revenue into a National Disability Insurance Premium Fund.

Most Australians assume that Australia being what it is - a wealthy, prosperous, nation - people with disabilities already get the support they need.

However, if you believe this, then you are sadly mistaken. We are a first-world nation with a third-world disability system. Too often people who have a disability have lives that are diminished, devalued, marginalised, disrespected and constrained. Many have lives of desperation, despair and grief. They cannot afford basic equipment, necessary aides or vital support for personal care let alone for things to improve their quality of life such as support to work or go outside their home.

Bill Shorten, at the National Disability Congress in Melbourne this year, described them as being exiles in their own country.

But it doesn't have to be like that. Properly supported, people with disabilities can work, live independently, love, have quality lives and contribute to their community and to society as a whole. Too often it is the very lack of support that forces people with disabilities to be seen as passive absorbers of time, energy, resources and funding.

The key point of the NDIS is that this is a scheme for all Australians, not just those living with a disability. Disability is not something that happens to other people. It happens to our children, mothers, fathers, partners, sisters and brothers. It happens to our best friends. It happens to people we love. It happens to us.

My son Jackson West has just spent several weeks in the rehabilitation ward of Canberra Hospital. I had the opportunity to witness the kinds of disability that people acquire - all kinds of people; men, women, elderly, middle-aged, young, some in the prime of life. Every person who is admitted to that ward has had an unexpected, unwanted and life-changing illness or accident. None of them, the day before they were admitted to hospital, expected that they would be there or that they could be permanently disabled.

In the weeks Jackson was an inpatient, I saw probably four or five people walk out of there. The rest of them are likely to have some degree of permanent disability and will rely on aids, equipment, paid and unpaid support for the rest of their lives. Some will lose their independence entirely, others will hang on to a scrap. All will be affected forever, as will their families and friends.

Whether the disability is genetic or acquired is not the point here. What is the point is that all of us have a responsibility to provide for those Australians who are vulnerable or marginalised or, because they have a disability, need support to live meaningful lives.

If we as a nation and a people say that all life is sacred, that all life is valuable, that any life can be saved with the modern marvels of scientific medicine, then we as a nation and as a people have a moral obligation to support the people who have or acquire a disability. It's not good enough to say, ''We have saved your life. Now you go home and deal with it and deal with it for ever and don't expect the assistance you need to have the life you are entitled to.'' This is not the way for a civilised country to behave. It is immoral, unacceptable and deeply unfair. Not to mention hypocritical.

John Maynard Keynes said ''there is nothing a government hates more than to be well informed for it makes the process of arriving at decisions much more complicated and difficult''.

Through the Productivity Commission's draft report on the long-term care and support of people with a disability, the Government is now well informed about disability and the enormous unmet need. It therefore needs to now make the decision to support people with disabilities and their families and carers into the future through a National Disability Insurance Scheme.

We will all be better off.

Sally Richard is is disability services advocate and activist.

 

 
Jackson and Sally on ABC TV's "7:30" Print
Written by Tim West    Saturday, 04 June 2011

In July 2011, the ABC TV show "7:30" (formerly "Stateline") broadcast a full segment on Jackson, Sally and their family. You can watch it below. We'd like to thank reporter Kate Evans, presenter Chris Kimball and the staff of the ABC for the excellent report they put together.

 

 

 
Jackson in hospital Print
Written by Tim West    Saturday, 09 April 2011

On Thursday 24th March, Jackson went into hospital via emergency. He has been in there ever since, with an atypical pneumonia. He also cannot walk, which is very worrying. The doctors do not yet know the cause of all his problems.

Here are some photos from Jackson's time in hospital.

jack-in-hospital

jack-hospital-first-smile

catching-some-rays

hospital-haircut

 

 

 
New building project to include house for Jack! Print
Written by Tim West    Wednesday, 16 February 2011

Two days ago, ACT Minister for Disability, Housing and Community Services Joy Burch announced a new development project in Swinger Hill which will include a house for Jackson and two other young men!

This project is the first major success for Getting A Life, the intentional community project spearheaded by Jackson's mother Sally along with two other mothers.

From The Canberra Times article on the announcement:

Ms Burch said a new ''intentional community'' development, to be located on a vacant block of land in Phillip, would combine about 20 public housing dwellings with a handful of homes for young people with disabilities.
''It sets these young adult men up for life and it lets them live in a supportive neighbourhood,'' Ms Burch said.
''The new community will provide an innovative accommodation option for people with a disability, who will live independently whilst receiving a mix of formal and informal support, as well as ongoing support from their families.
Ms Burch said a new ''intentional community'' development, to be located on a vacant block of land in Phillip, would combine about 20 public housing dwellings with a handful of homes for young people with disabilities.

''It sets these young adult men up for life and it lets them live in a supportive neighbourhood,'' Ms Burch said.

''The new community will provide an innovative accommodation option for people with a disability, who will live independently whilst receiving a mix of formal and informal support, as well as ongoing support from their families.
Here is the ABC Local News report:
 
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