Life Matters

LIFE MATTERS

I discuss here the Matters of Life because Life Matters. From the very moments of conception until we meet face to face with Christ our creator. I share with my readers how my Christian Faith influences my biblical response to the events all around me.

Wednesday, October 15, 2014

Let's Talk Inequality!




At the heart of the Human Right Charter set out by the United Nations (UN) is a global response to address the issue of inequality. Sadly in the world today many rights of minority groups are violated daily, in the most horrific ways.

Imagine from the BBC News

Under the Universal Declaration of Human Rights is a statement “All human beings are born free and equal in dignity and rights. Everyone regardless of race, colour, sex, religion, political or other opinion, nation or country of origin, property, birth or other status is entitled to the same rights and freedoms.” (Articles 1 & 2 of the Universal Declaration of Human Rights)


Image OSB Syrian Conflict

In essentially inequity can only exist when a person or group of people display actions of superiority over another person or group of persons. Superiority, denotes the presences of hierarchy in society, in which a person or persons takes a position of dominance other others. In this situation a situation of inequality and perhaps a restriction of rights are born.



The establishment of the NAZI party and attempts to erratic the Jewish population is perhaps the most famous case of the excretion of superiority is history. In all areas of conflict the excretion of superiority through the abuse of authority has arisen. However conflict is rarely played out on the world stage such as the current conflict created by the rise of isos in the Middle East.    

Source: Sydney Morning Herald The World




Conflict exists all around us, even in the family home and can lead to authoritative and thus abusive situations when the rights of another person are deny. The presence of domestic violence is an example where conflict where is born form inequality and excretion of superiority is practiced. 

'



As someone who belongs to a minority group and experiences inequality everyday I recent penned this poem for 3rd December which is International day for people with disabilities.  


We are people like us.

Spinning on wheels,
Searching for deals.
We like a night out,
Watching the football.
Sometimes the TV calls.
We are people like us.

We’re mothers and fathers,
Your sons and daughters.
The sisters who become best friends.
We’re your uncles, your aunts,
Even your grandmothers.
We are people like us.

We’re the poets and artists,
Craftsmen and cabinet makers.
The apprentice chefs,
Your IT specialists.
Even the law makers.
We are people like us.

We tap on our keys,
Surfing the net.
Use voice activation
On our modified boards.
Even read books in Braille.
We are people like us.

We laugh and cry
Through life’s highs and lows.
We celebrate birth,
And watch those we love die.
We journey with the joy and the sorrow.
We are people like us.

We play soccer and footy,
Take on the basketball courts.
We wheel through marathons,
And race the 100 metres too.
Even become elite athletes.
We are people like us.

We sing and we dance,
And watch our children play.
We cook cakes for the school fete,
As we tuck our kids in at night.
We pray that they’ll be alright.
We are people like us.


We attend schools and TAFE,
Some of us study for life.
We ride trains to arrive at work,
We pay our bills, even the rent,
Often spending too much on food.
We are people like us.

But too many of us live in homes,
Where others residents are about eighty. 
We take our pain killers and medicine,
Watch TV instead of going out dating.
Craving real coffee from Coffee Club.
We are people like us.

Some of us choose to be trapped,
Others fight the boxes that box us in.
Houses and housemates we may not like,
Doing the same thing despite true passions.
Not living, rather, just existing.
We are people like us.

We are people like us.
Brothers and sisters,
Journeying through life.
Laughing with you,
Carrying your sorrow too.
We are people just like you.

You make us different,
Stand us apart.
Create little boxes to fit us in.
Insist on hiding us away.
Pretend we don’t belong, when
We are people just like you.


Debbie Chilton © Copyright 2014

In terms of human rights, people living with disabilities in Australia are far for equals.  In terms of standards of living, access to education, access to the justice system, employment opportunities and basic safety from being abused by those who feel superior to us.

Today we're talking inequality and to day bloggers are addressing the many difference faces and issues inequality allows to arise.

Under our skin - in the blood and bones. in what makes us humane - people are all the same!

Monday, October 13, 2014

Three days to go . . .

Let's Talk Inequality!





In the words of Sandra Bullock 


We are all born Free and equal

Put a stop to

INEQUALITY! 




Saturday, July 12, 2014

The Puzzle of the NDIS

The rollout of the National Disability Scheme has begun and some trails states have now been operating for 12 months. Like anything new some things are working very well and problem areas have emerged. Rightly, we ask the question Have we got the formula and maths right?
With stories of inconsistency among trial sights emerging, it is these inconsistency that add to the fear and confusion as Queensland awaits for the NDIS to begin. One of the biggest myths feeding this confusion is the NDIS will look the same in every state. That the blue print being used in Tasmania will be the same as the one we see role out in Queensland in 2016. This is not the case. Essentially while the principles of the NDIS underpin the scheme nationwide, each State and Territory has an individual agreement with the federal government. The priories vary from state to state.
Some feel that the overriding principle that underpins the NDIS is complete control will be handed to clients or their families where there is an adult guardian. That people regardless of their individual compasticy levels will be handed large packages to spend however the wish. They will elect to hirer unqualified staff and below awards rates and make outrages demands of staff to ensure the money is stretched to maximize service hours.
In Queensland we have what I term a double whammie where the department currently responsible for administrating the funds also provide much of the resident care in the state. This has been a highly controlled area of care for people with profound disabilities or complex behaviours requiring very high restrictive practices to be put in place by the adult guardian.  It is my thinking the Queensland government is yet to outline the role and any changes to the adult guardian.
Much fear among clients and support staff and those working for disability services centres around the “privation” of the industry. Rather amusing when some of these worker work for large Not for Profit Organisations such as Endeavour, Oz Care and the Cerebral League. In essence these are the private large corporations or the Woolworth and Coles of the disability sector. These are the fingers of feared monopolization and talk of mass takeovers are being fueled.
The truth is the only area of the disability sector that is not currently privatized is the residential programs run by the department of communities. With the disbandment of the department and arm that currently administrator the funding crossing to the NDS then common sense tells you residential facilities will to be privatised.
Just as NGO’ have compliance and surveillance audits now this will continue long after the department has been dismantles. Something tells me, fear of job losses is fuelling the fears of ‘privatization’ and ‘deregulation’ of the industry. We are not the dairy cow industry, we are dealing people’s lives, people most of us view as ‘at risk’.  A term I believe as service provides and support workers we need to grapple with in the days and weeks ahead.
Just like aged care and hospitals, models of privatization already exists and operate in Queensland and very little reconstructing needs to occur. An industry that will become driven by market forces, doesn’t necessarily mean lower prices, mass job losses and lower standard of care. It can and I believe should mean services diversity and lift stands to keep current clientele and attract new customers. The challenge for service providers is to learn to true value of the market, to value and respect the client and empower them to live quality lives.
Disability services were administers under the NDIS agreement our state government through legalization yet to be written remains the sectors regulators.
I believe another contributor to ‘fear’ in the sector is the issue an issue of control or what I ‘term perceived control’ or ‘power grab’.  So who is now in control?  May I suggest that no one is ‘in control’. As scary and challenging that sounds, the ‘control’ often decries as ‘care or care givers’ as a result of the power game we as humans play because we feel superior in some way will be disbursed over a number of bodies, in a multi-level of government approach.  When we think of clients now have ‘control’ our thinking about the ndis immediately becomes distorted.
A disbandment of control
The Department of Disability Service (Administration of funds)

Handed to administrators of the NDIS
Funded by Federal and State Governments

The NDA administrates funds

direct to clients and their families, these funds are either held in separate Business Accounts with ABN for those self administrating or held in trust by a host service provider
A system already in placed in Queensland under
My Life! My Choice!
In Queensland under the state government and the department
Some clients and families are being given choice.
The right to chose should not be seen as control




Both Federal and State Governments must
Introduce laws to safe guard all people with disability
To empower them to make choices around
WHO WILL SUPPORT THEM
(I.E. WHICH SERVICE PROVIDE)
HOW THEY WANT TO BE SUPPORTED
(IE. DEMENSTIC SERVICES, PERSONAL CARE AND DAY SERVICES)
WHEN THEY WANT TO BE SUPPORTED
(I.E. WHAT TIME THEY WANT ASSISTANCE TO GO TO BED)
None of these choices are unreasonable or exerts control over anyone.

The State Government is responsible for
State laws around property ownership
Industrial relations
Industry Regulates  
Health and Safety
The National Administration of funding does not affect state laws that protect workers, organisations and their clients in this case people with disability and their families.

Disability Services as a support provider will cease
It is predicted NGO like Endeavor, Cerebral Palsy League,
Uniting Care, Blue Care and Young Care will buy
Some of this and maybe some smaller players will emerge.

I don’t  think giant likes Masters and Coles/Myers are likely
 to pop up in the human services market.

We know under the NDIS clients will be able to chose there service providers. This choice brings empowerment clients can chose to live in an Endeavour house or a Uniting Care unit and yes some will move into private homes and with choice comes risk. Without choice the risk of control and abuse is higher.

A word on risk: Some people will always choose to do the wrong thing! Some people who break laws and abuse clients. Let’s not pretend it hasn’t happened in the past under a system dominated by state care.
Empowered Choices
Provide means to speak out about abuse
And making choices about safety.

Division of control and responsibility
Should build greater protection.
Build sadly nothing stops anyone intent on breaking the law.

It’s time to recognised a system of ‘ specialize care’
for people with disabilities is not needed.


My hopes for the NDIS in Queensland and the disbandment of the department known at Disabilities Services, like many people living with disabilities who have a high compastity to function independently, is to see an end to a system which is based on a care giver model, where others make decisions for those the ‘view’ as less or ‘needy’. 
‘A care giver model’ like that of a medical model can view people as patients who are sick or mental ill and in need of nursing. Just because I need assistance to shower doesn’t mean I sick, well people take medicines many more than me. It is true that some people with disabilities need a level of care, and for some that will remain 24 hour a day care. The NDIS should ensure support, assistance or equipment needs best meet the needs of all Australians with disabilities. 
I believe this is possible thought a system that funds the individual or family not the disability.  In essence a medical or care model provide carer based on the classification of a person’s disability and their perceived inability to tasks. I liken the current system to a one size fits all system. It someone is born with cerebral palsy then the cerebral palsy league is the best service for them. Any classification system gives rise to misconceptions in the general public.  From which organisations and governments employ their staff.
Once perceptions are from and action upon, the most vigorous disabilities awareness training will not ultra myths people have convinced themselves are fact. And the fact is that Queensland’s State Care model adopted by Disability Services is long overdue for a overhaul.
In the option of many it was a system established on the floor that people who once lived in state institutions still needed a level of ‘care and protection’. That system was then adopted for all people living with disabilities, whether the person was a ward of the state or live at home with their families. After decades of critical funding shortages, under a system never designed to cater for all people living with disabilities, people with disabilities and families have driven what we now call ‘the NDIS revolution’.
It is the model of disability care the people with disabilities and their families have told the government they needed.  The needed a system where the dollar value of someone’s package was not determined by the classification of their disability or the daily tasks or decisions they were unable to complete, but a system that took a whole of life approach. A system that signed up a child at the age of there, and acknowledges as the grow their needs will change and developed what works at twelve will no longer work when they reach 32.
A system that recognises people live into old age and the impact of disabilities on the aging body is greater than the general public.  It’s a system that embraces individualists and celebrates difference, demanding individual planning in consultation with the person, their families and advocates. Where people are offered choice in the way they are supported to achieve their goals.
The challenges for us as workers who are now employed to assist people with disabilities rather than in a way ‘we’ have traditionally provided care or programs for our clients to attend, in not this privatisation and threat to jobs, but our ability to grips the NDIS revolution and transform our thinking that prevents us from believing in grade myths as truth not longer have a place in this industry.
Our customers, whether it is a person with the disability themselves or a family member is not our patient and they are not asking to be made whole. They a hear to purchase a service that they believe with improve their lives and best achieve their lifestyle goals and that as management of a direct service provider is what we will need to deliver on July 1, 2016. 
We need know what we have to offer, how we are prepared to offer it and what price is attached to the service.  We know what our hairdresser charges, out clients are going to ask how much it costs to be support at TAFE and does it include mileage? Some clients will want to know will our staff show them or do they need to engage another service provider.    
The like another ‘smart shopper’ will shop round to get value for money. Where once the carer did everything from menu planning, shopping, the housework, the shower and made the clients appointments. As a client I can go onto the NDIS website and chose a registered demotic cleaner to do the housework, a transport service to take shopping and my support work to enable me to do my hydrotherapy.
Despite there being major shifts in the industry in the way we discuss clients and people living with disabilities and changes in job titles, the job as a paid carer has at stronghold on the industry. The ‘role of a carer’ implies a sense of authority and decision makes’, name changes in job titles such as support worker under a care model approach have failed to allow staff to adapt to a role of enabling the client to make their own choices and do as much they are able. These workers are a bit like the mums who want to continue protecting the child even after their grandchildren come along.
These workers will struggle in a market place where our clients whole the purchasing power. ‘Carers’ or whatever they want to call themselves who in on walking into clients homes putting on the jug to make themselves coffee while outlining the days agenda and assigning tasks to other staff, are in for a major awaking. 
They may need to ask the family before making themselves coffee and they may be asked to hang out the washing before they take their son or daughter to the gym instead of the movie the play to see before taking mike to Macer’s for lunch.  They may need to go some physical work before being paid.
The NDIS focus on enabling people to make choices like every other person and not to many people chose to see a movie on the same day at the same time every week. This is not the type of community participation NDIS is targeting. In  my view funding would be better spent paying a cleaning and  supporting the family to go out as a family unit. Just like families without children with disability.
Support under the NDIS is intended to assist people and families living with disabilities to live and afford lifestyles similar to others their same age. Support employers who populate the old care model offered under disability services will prove to be a liability to the employer.
We know the NDIS formula is not correct, we know changes and clarifications need to be made. Both under and over estimation in the productivity budgets were made and I believe too much change dismissed the power of community attitudes and tolerance levels of anyone who is different to themselves.  
 is


Friday, July 11, 2014

We are people like us

People like us.
Spinning on wheels,
Searching for deals,
We like a night out,
Watching the drags,
Or winter brings Marrons,
We are people like us.

We’re mothers and fathers,
Your sons and daughters,
The sisters who become best friends,
We’re your uncles, your aunts,
Even your grandmothers,
We are people like us,

We’re the poets and artists,
Craftsmen and cabinet makers,
The apprentice chief’s,
Your IT specialists,
Even the law makers,
We are people like us.

We tap on our keys,
Surfing the net,
Use voice activation,
Or our modify boards,
Read books in Braille,
We are people like us.

We laugh and cry,
Through life’s highs and lows,
We celebrate birth,
And watch those we love die,
We journey with the joy and sorrow.
 We are people like us.

We play soccer and footy,
Take on the basket ball courts,
Some of us play tennis too,
We wheel through matrons,
And race the 100 metres too.
We are people like us.

We sing and we dance,
Sometimes we drink too much,
We cook cakes for the school fate,
Safely tucking our kids in a night,
While we sit listening to neighbours fight,
We are people like us.


We attend schools, TAFE and
Some of us study for life,
We ride trains to arrive at work,
We pay our bills even the rent,
Often spending too much on food,
We are people like us.

But too many of us live in homes,
Where others residents are about eighty,  
We take our pain killers and medicine,
Watch TV instead of going out dating,
Craving real coffee from coffee club,
We are people like us.

Some of us choose to be trapped,
Others fight the boxes that box us in,
Houses and house mates we may not like,
Doing the same thing despite true passions,
Not living rather just existing,
We are people like us.

We are people like us.
Brothers and sisters,
Journeying through life,
Laughing with you,
Carrying your sorry too,
We are people just like you.

You make us different,
Stand us apart,
Create little boxes to fit us in,
Insist in hiding us away,
Pretending we don’t belong when,
We are people just like you.


Debbie Chilton © Copyright 2014

Thursday, July 3, 2014

My Protest

My Wheelchair

It seems to me you wish I’d disappear,
Fad into the crowd and assimilate,
Where my difference no longer registers,
You know, I want that too!

I don’t enjoy being isolated,
Made to feel like I don’t belong,
Like I shouldn’t be allow to shop,
Or feel my wheelchair is in the way.

Because my wheelchair is in the way,
It is the barrier  between you and me,
Regardless of intelligence or personality
All you chose to see is my wheelchair.

It’s not your flight of stairs,
Your narrow hallways and poky toilets,
No!  It’s my wheelchair,
I clearly do not belong!

You prefer, I’d disappear . . .
Not to be stuck at the bottom of . . .
Your staircase . . .
You prefer I was not hear at all!

My bills for food, transport and medical costs,
Scene as a merely drain on the public purse,
Count as a person because I was born,
Not because you are humane and give dignity.

My wheelchair that gives me life,
Access to the outside world beyond my house,
A reason to embrace the narrow out of life
And the ability to work and help others.

My Wheelchair
Is the Barrier between us,
What separates our sense of entitlements,
and excludes me from your world.

Not like your twisted words sound,
You make out like you want me and need me,
Rubbish! You just don’t want to waste,
Your money on someone, you wished would disappear. 


Debbie Chilton (c) Copyright 2014   

Monday, June 30, 2014

Giving Voice

Dear Minister,

Since you are intent in silencing my voice through moves such as the dismissal of an independent commissioner for disability rights and the ABC has axed it online news service, which gave those like me a voice. I thought I share something of my day, which started at 7:30 when I got up for work. 

Normally I attend class at the Brisbane institute of Art on a Monday, but we are on Semester break, I decided I'd take a client to an art gallery to research ides for his next project.  I mentor artists with disabilities and mental health issues in the process of their professional development. However because my wage is dependent on securing grants, I may only be paid for six months at a time, Centrelink refuses to accept I am  employed.  However, I do not escape the tax man. 

Today, again I here you want people like me and my clients to be working.  Fine, the truth is most people with disabilities would love to find employment to fill their days and to have an income that helps pay for the increase of cost of living due to their disabilities, things like wheelchairs, walk aids, medications, medical assistance, home and car modification, however the perception of  most employers is that employees with disabilities can not deliver a 100% even when their disability will not impact their job performance. 

The myths and prejudices around people with disabilities are alive and well, but thanks to your government our voices from tomorrow are silenced. Anyway back to my day . . . 

I was doing some basic admin when I got a call to say my support workers car had broken down and she didn't know when she'd make it into work. Was she coming in to work or not?  They couldn't tell me and their was no back up worker who could get me ready for work. 

Fortunately my mum was able to come over and make me presentable for work and I had alternative transport booked.  Apart from the hassel of phone calls while getting ready and not being able to have a shower, (my mum had enough time to do the finishing touches like my hair and put my shoes on) before my transport turned up.

My point is the 'little things in life' that go wrong, like the car not starting has a greater impact on those living with disabilities.  As resilient as I am it plays on my mind, some people are waiting to prove I am unreliable simply because I have a disability called 'epilepsy' which is uncontrolled by medication.  However if I didn't get to work today it wasn't my fault. 

The life of those of us that need assistance to leave the house is not as easy as you make it sound.  

We depend on others to be on time, we need to check out all accessibility issues. I have ant medical emergency system to keep in place when unaccompanied, most people I deal with assume I have an intellectual disability because of my speech disorder, the idea I on my way to work, paid or unpaid is inconceivable.

Today I learn you think I need to look for paid employment.  I wish you knew how hard it was to swim up steam. It is exhausting. 

So if you think all people with disabilities are lazy, I hope this gives you food for thought.

Regards,
Debbie Chilton
     

Thursday, June 26, 2014

People Like Us

People like us
The concept that I should be isolated, by labelling because I have a visible physical, intellectual, behavioural or any other disability, serves only to feed people’s fears and misconceptions. As long as we insist on labelling and discussing incompasity a social inclusion model or any social support system is not going to work.  Sadly that at the present time includes the NDIS.
The foundation principle for the frame work of the NDIS is that we are all equal and as Australians living with disabilities we are entitled the same as everybody else. In terms of the NDIS we’re talking about lifestyle choices. Choices around:-
·       Schooling
·       Education
·       Employment
·       Postal Address
·       Sport
·       Type of dwelling
·       Hobbies
·       Access to therapies and services
In part until now the lifestyle choices for people living with disabilities has been determined or at least restricted by their post code or access to income.  A choice to live in Alice Springs for a family with a child with profound disabilities is not realistic, unless the family has decided that living in Alice Springs is more important to them than accessing specialized educational services and therapies to enable the child to reach your full potential.
Here I want to say, that is their right! That is there choice! Therefore, that is the right choice for their family.
In some cultures the family or “the clan” is the most important structure in their life (or lifestyle), such as indigenous Australians. However, the perception is the Gen Y’s tend to be self-indulgent.  They want to live in the here and now!  They may feel that they need to live in the middle of the action!
No one truly questions you post code, unless you or your family are living with disability.  Suddenly because I am different in one way or the other,my “lifestyle choices” can be questioned. The socially acceptable “norms” shift. As a single female with a physical disability, it I chose to live in Kings Cross – Sydney NSW my decision would be questioned. Even though I have a degree and proven abilities in confident in decision making.
Hang On! What happened to my life, my choice?
Where did my right to make choice end? Simply because you ‘feel’ the right to make a judgement on my choice?  If I am not making a choice that is illegal and I don’t have an adult guardian then no has a right to stop me from living in Kings Cross. Now, if I wanted to become a drug dealer, and required my support workers to use a gun and inject my drugs, then that a different matter.  The very labelling system we use to help those living with disabilities gain the support and assistance that they need, divides us. With the disability label comes this sense of ‘the right to judge our choice’. Whether or not there is an intellectual or cognitive impairment.
Before we even think about how the NDIS will shape the disability sector under privatization and market driven forces. While you argue if someone with cognitive functioning disorder has a right to be supported to see an adult movie or if people with intellectual disabilities have the right to have a relationship. Before you begin to argue that a person is not able to live independently.
I argue you haven’t grasped the very foundations of lifestyle choice and how it affects the NDIS. Before you argue hours, types of supports, programs, organizations, personnel, specific, goals and certainly activates and if a client can have vegemite on toast for breakfast, you need to pick up your camera and refocus. Under the NDIS diagnoses’, labels and negative attitudes are not central in the planning of support needs.
The planning process is around the persons goals. These goals will be largely influence by an individuals or families lifestyle choice. Someone living in Mt Isa is not going to want to be supported to have surf lessons. Before we talk about activities and what you think their week should look like or if they can be supported to go night clubbing, you need to grasp what a lifestyle choice is and the types of decisions lifestyle choices affect, such as housing.
What areas of their lives are involved and ensure the social norms and expectations aren’t going to change simply because a disability is acknowledged. We do not said to some because they are indinigious they can’t live in the city. Yet we tell many people, too many people in my opinion the need to live in a group home or supported accommodation. How would you like it if the government decided it was in your best interest to live with a bunch of strangers because your family could no longer carer of you or to move you to a group home on the Gold Coast when you’ve lived in Toowoomba your whole life?  What if I chose you friends, the people I think it’s ok to hang about with? This is the type of disempowering environment people like ‘us’, people with disabilities, live under.   
We don’t want to choose what time we go to bed, we want to talk about where we live, if we can work, what support we need to find work, and what type of lifestyle we can then afford.  Maybe living on the DSP means I can’t afford sky diving lesson or to go out drinking every Friday night.
If the NDIS is to work people need to grasp the people with disabilities are just like us. They too are connected and plugged into the world. People with disabilities are somehow connected to someone, even if that person is not presently in the person’s life. Everyone had a mother at some stage. Regardless of the level of impairment everyone has some level of emotional attachment to someone. To be human is feel and to make choices. As humans we don’t always make the right choice.
Some of us chose to smoke or drink too much alcohol. Many people chose to eat the wrong types of foods or too much of the right kind of foods.  Mostly it’s only our GP’s that question these choices.  People living with disabilities shouldn’t have to justify eating a pizza.  People living with disabilities are just like us.
The make both good and bad choices, just like you. Until we drop the labels and stopping moving the goals posts according to a diagnoses we will never experience the joys of living in a inclusive society. The NDIS cannot, on its own achieve this goal.
Only when we are seen as people like you, will our choices not be judged.