Who s right?

Yesterday was international Human Rights Day.  Readers of my blog know I am an advocate for Human Rights and in particularity the rights of those living with disabilities, giving equal rights under the Australian Law.  So who gets to decide what is 'right and what is wrong'.

The meaning of the word 'right' in this instances is not being correct. Rather it is a legal terms meaning we all have moral and legal obligations to our fellow human beings.  'Right' in this instance is not objective or base on opinion.  No individual can force another into doing what is morally right. 

All human were born free and equal, thus all individuals worldwide are entitle to the same protections, freedom, and access to resources.  These 'rights' are state by the United Nations whose role is to enforce world wide stands for the treatment of all human beings by others.  

Human rights is not being correct rather recognising all individuals have the same entitlements including access to food and water; access to education; access to job opportunities; access to all areas of there communities; and access to equal representation under the law.   

As Australians it is these rights and freedoms we are all responsible to up hold.  As those with a voice we have a greater responsibly to give a voice to the voiceless and empower them to demand what is fair, just and equal.

Not all Australians are free under the law and our government has a long was to in extending compassion to those who have been robbed of their freedoms and rights in their country of origins.  As a nation we have a shocking history of violated the rights of others. From the day we set foot on the great South land until to day where foreigners seek refuges are imprisoned and used a political prawns; religious freedoms are out dated, to where we want to deny national costumes, we're so afraid of offending others we can not celebrate Christmas and those with mental illness and disabilities have to access to the law.

If we can't stand up and be counted for what is fair, decent and moral correct,  where has our freedom of speech gone.  I count, you count we all matter.  Who is right?  In this case its the international Court.

   

NDIS and the week it was

Any hope that my new house mate was going to assist with my book keeping or managing my ndis funding was ditched when she curled up and went to sleep! 

My greatest achieve for the week was finally lodging my tax return. Now quick books records all business transitions there's no excuses in 2018. As you know my ndis goals are centred around building my art practise and an inclusive art community in Ipswich.  This week members of my art group meet to plan an art exhibition to showcase the creations of artists with disability in Ipswich. This was an exciting step for me, for the first time someone outside the disability sector initiated an art exhibition to showcase artists with disabilities.

So I am now settled on working towards engaging my own support team.  I am in the final process of putting into place my team structure and their pay structure.  I meet with Kathy Rees who has self-directed her daughters support for many years. I known Kathy through my role on the Board of CATS Inc. Kathy has assisted me and CATS in building leadership skills over the years.  Kathy assured me it is not more leadership skills I need - just a team who is on the same page as me.

After a few weeks of frustration waiting for providers to get back to me on quotes and agreements, I decided that wasn't good enough. So I set a few deadlines and it worked. I am not able to take my disability off while others organise themselves to provide the services I want to purchase.  Are you sure they want my money? Last week I shared I thought I got better customer service in the mainstream rather than the disability sector. 

So Kathy suggested as I am self managing and that has been my experience to date, that I shop outside the disability sector.  One agreement I received said - NDIS agreement with No plan.  No Plan? Sorry I want to know the outcome of my purchase.  I asked for more details and none have been provided so I am moving on.  

I am still intending to have my team protected by a provider and I my their policies, However, I will be doing my own recruiting with assistance from other businesses.  This week I have continued to be my own advocate and ask for the things I needed.  

I do not need anyone to do this on my behalf. Unlike service providers who don't know what a self-carer is , the ndia has recognised I know my needs better than anyone.  I am he author of my own future.  

I intend to use my ndis funding to allow my future to be bright!

In to the melting pot

Artist's Statement

In 2013 whilst involved in the Leaders for Tomorrow Program Deb commenced studying at the Brisbane Institution of Art. In 2014 she created her first doll ‘Gabby’. Deb’s then mentor thought Gabby was more craft then art.  She still struggles with the understanding of “what is at?” and “what is craft” and admits this current exhibition crosses the boundaries.

What is more important in this exhibition is to creating a platform for debate on diversity and social inclusion.  For Deb good art, creates discussion and forces us to ask questions.  Art is not to answer these questions but to promote debate.

As an artist Deb is drawn to the human eye.  We all know these are the windows to our soul.  Both as a poet and an artist Deb has explored the human existence and emotions.  Her own eyes hide what it means to constantly fight and validate your own rights in a world where disability is less instead of differently abled. 

Like all artists she struggles with her identity and feels her work is potentially less valued due to the imperfections’  of hand movements.  Through the journey of ‘the melting pot’ doll by doll’ Deb demands a voice and a value to her work.  For each individuals regardless of colour, creed, gender, beliefs or abilities add to the fabric which is woven into community.

In mist of diversity we need to value each other.  In the exhibition Deb has chosen no to give some dolls faces.  These dolls represent the voiceless, those with disabilities is the streets of Calcutta, disregarded by society.  In modern Australia many with disability, because of their impairments cannot access the legal system and those remain un protected from those who seek to abused them. 

As the exhibition progressed, so too has the emergence of the struggle rights for marriage and equality in married and the division of refugees.  A nation of immigrates to took occupation of an occupied land and label its inhabits as ‘sabotages’, now call those seeking refuge, criminals.

These are detained like our First Australians, like those with disabilities deny naturally justice, imprisoned - indefinitely without a trail.  Deb wants to be proud to be Australian, but said our current world standing causes her to borrow her head in shame.        

NDIS Have we Learnt Lessons From The Past

Surely o journey forward we need to take with us lessons from our past.

As our knowledge and understanding of disability grew we decided that perhaps the history of disability could take a new path and people with disabilities didn't need state care or protection form society. History tells us regardless of the size and nature of the institution the structure almost always leads to abuse. In our determination to protect our most vulnerable people had left them dis-empowered and without a voice.

The ndis or National Disability Insurance Scheme was launched in Australia last year, as on going measures to ensure the humane rights of all Australians with disabilities.  Specifically to give people a greater choice in the was they are supported to achieve their hopes and dreams. 

Supporters of people with disabilities and later people with disabilities began to demand that people with disabilities be treated like every other Australian. This movement became known as the 'Every Australian Counts campaign. 

  Every Australian should have a voice in our democratic process. 

Because some people in the industry cared enough we began to realise that some people with disabilities may be capable of living in the community given the correct assistance and care.  As individuals moved into the community we saw more potential for these individuals. Their faces told us. just like us they yearned to learn and explore. 

So began the transit from being in 'Care of The State' to being 'care for in the community'.  However this stopped short of seeing people with a disability as being part of that community.  Things like education, employment, access to legal representation and a voice in our democracy.  We also discovered that people with disabilities has some types of disabilities could learn and potentially be employed at some level and thus integration to he community may be possible for some if not all.

But have we learnt from the mistakes of the past.

So someone, somewhere decided institutional care as we had know it was actually detrimental  to human growth and development and so our era of 'sate care was closed down and we opted to 'caring for people with disability' with in the community itself.  These individual were still the primary responsible of a state and new provisions for their care needed to be established. 

Most but not all residents of large scale institutions move into smaller more 'house like' institutions or 'group homes'  their reality was they continued to be 'cared for by the state. The only change for these individuals was the size of the building in which they were housed had changed.  The continued to have no rights and thus no voices are members of society.

Emergence of grated communities.

As the era of deinstitutionalisation and a end to 'state care' was ushered in the state government scrabbled to pass laws to protect these individuals and a new system where by they could 'be cared for in the community'; These individuals became the primary responsibly of what would become known as the Department Disability Services. This department was specifically founded to 'care' for individuals once under 'state care'. 

With many residents having loss family contact or abandoned by family altogether, there needed to be award to 'protect' these unskilled people and thus the responsibility was given to the Public Trust to represent them legally manage their money. No one had give through to the care and the needs of children born with a disability born post state run institutions. 

At almost the same period of time, medical advances meet than more children were surviving pre-birth defects and difficult births.  Coupled with an increased survival rates of common childhood illness and injuries later in life the number of people with disabilities needing assistance significantly.  It was accepted that these people to should be also be supported by the Department of Disabilities, introduction of community care and allied health support services commenced to care for those living in the community.    

This gave birth to the NGO's and the disability sector as we know it today.  The organisations provided respite care to family members; in-home care, community outings, life skills, day respite centres, social groups and activities and support groups for siblings. 


As mentioned in a previous post many people including the disability sector itself still see the state as being part of the participants care.  This language gives rise to the belief that integration has taken place not the social inclusion of those living with disabilities.  Three decades after the role shifted from providing care to only providing care and assistance where needed, individuals and organisations still referred to carers as being paid employees.   

As we move from state less responsibility for a caring role and families become directly responsible for in the lives of people with disabilities, we needed to find another name for care workers.  Carers were now unpaid family members who took responsibly for the care for individuals with disabilities.  The role of a paid employee in now to empower the participant to achieve their personal goals.

Until the development of the ndis, disability policy was then being writing in order to keep paces with the expanding role of the Department of Disabilities Services.  From the beginning writing policies and changes to the way the funding was provided were desperate attempts to plug holes in a system that was failing many.  

Eventually the Queensland State Government admitted they was and would never be any more funding.  Funding was only reallocated when a person passed away or moved out of the region which the funding was attached too. Pre ndis moving address could mean potentially losing or support. Though out its short history, disability policy and thus Disability Services in Queensland could only apply band aids to needs the required major surgery.  

These were the condition that gave birth to the human rights movement known as the Everybody Counts campaign that would give birth to the introduction of the National Disability Insurance Scheme. However, the legislation that gave life to the ndis was about much more that providing basic care for survival. 

Support under the ndis ceased to be known as 'care' and became assistance for people with disabilities and their families to live a life style they themselves would determine. When we look at support under the ndis we are not just looking at respite care, in home and community support, we are looking at a whole range of services the can enable a participant to become more independent and thus engaged and be included in their local community.  Thus the ndis broadens the range of assistance being include, things such as home modifications, allied services for adults, equipment and medical needs have been added.  

The ndis was never meant to be the next funding model for disability care.  The term 'care' does not sit well with a generation of individuals and families who were failed under the medical model that Disability Service oversaw.  History tells us that governments no longer need to protect and care for people with disabilities that role in now handed to the legal unpaid carer of the individuals with disability. 

The need to move from a medical model to a social model of disability assistance and support was highlight by the fact a person needed a medical diagnoses to even apply for assistance. By moving away from the medical model a diagnoses in not longer required.  The social model of disability respects it is not the impairment or impairments that disable people.  People with disabilities are impaired by the structures we have created as a modern society. 

The ndis believed to revolutionised the disability support system we needed redefine the term disability .  Further to that funding should not be about what the person can't do (ie what their disability is), funding should be about the persons aspirations. The ndis became a scheme that all Australians could access it it ever became necessary. The role of the scheme was to increased social and economic participation of individuals and families over time the scheme should pay for itself.  

Given the speed of the roll out and magnitude of a shift in thinking required to make these historical and legal changes, is it not surprising we needed to fall back on what we have always known to meet government timelines and targets. The old OT assessments were pulled out to speed up the process of determining the 'needs' of the individuals.  Most providers don't even look at your goals their only concern is do you have the money pay us. 

It has quick emerges that services are currently operating in survival mode.  The very same survival mode the been operating under the watch dog of the Department of Communities. The way we fund support and assistance has not changed, because mistakes from the past have not been recognised.  We needed a lot more time to adjust to the changes.  Pass a baton requires more than relabelling a system.  

Now we see the same mistakes being repeated,  The roll out in Ipswich is to be completed by December 31st.  The state government will no longer fund supports of people with disabilities in this region after January 1. At conception it was agree that the medical model should not be involved at the assessment processes. Rather individual supports would be decided by the participants goals  and the way the nominated to achieve the goals.

It was a shock when an OT assessment was used during my planning meeting.  In the zealousness to transfer existing clients and intake new participants, my planning meetings took place over the phone, without the person with a disability being involved.  From the out set the promises the ndis upheld were broken.  Is now recognised that planning meetings over the phone were a mistake.    
What participants wanted and services needed was more time to process a new way of thinking.  To grasp what a social model of disability was and how to implement new polices to assist staff to empower participants make choices. Instead participants were told what a service was offering and they choose to take part or look else where.

An offer and take it or leave it for most people with disabilities second best is better than no service at all.  Society continues to remind us we are less and thus less is what we are still being offered. Once gain we need to stand up and be counted.  We need to remind people what we fraught for.  We must asked to be counted as equals to deliver, and remind others,  anything else means we failed. 

Is you Senator on the nice list?

Dear Senator,

I am one or 460,000 people to benefit form the roll out of the ndis. whatever society thinks the face of disability is . . . It's not my face!

I am 49 and was born with cerebral palsy.  In 2012 I took part of the Leaders for Tomorrow Program.  As a result of the Labour's governments in me.  People with disability in Blair have a strong advocate. I was given the opportunity to study visual arts at the Brisbane Institute of Art. 

As a result I now connect to my community through art.  Many parliamentarians may know of my work through Shannye Newmann MP.  Who has endorsed me and promotes my community work.  I have now commence my own art business to enable other artists to work in the mainstream arts community and I am the Queensland Representative on the Supported Studio Network. 

The ndis promises to give artists living with disabilities across Australia the support to foster their skills and sell their artwork.  Thus allows us to contribute to the cultural and economic growth in Australia.  Despite epilepsy onset later in life, I not only am self-employed but I employ others.  

It is only through the support of the ndis am I able to get ready for work and continue to create artwork and support our Ipswich creative community.  You and others many see the cost of the ndis as a luxury, but just like the investment in me through the ndis, the ndis can assist others with disabilities to participate in the economic development of their local communities.  We are providing jobs for those who provide our support needs.

I have been very bless by the leadership opportunities bestowed on me.  However, when I sit an reflect these are my rights as a individual and I have worked very hard to gain the roles I have obtained.  Yet thousands of others with disabilities do the same without the recognition I personally receive. The implementation of ndis funding in full will be our countries greatest step towards ensuring the rights of Australians with disabilities. 

This is what is on my Christmas wish list this year.  Could you be nice and talk to your fellow senators about my Christmas wish.

Many Thanks and Merry Christmas,
Deb Chilton.  

International Day For People With Disabilities

Is not really about disability at all.  What is actually being celebrated is the achievement of Australians and all people with disabilities around the world.  Some of these people will be well known but most are ordinary Australians living with the daily challenges of disability.  By highlighting the achievements of these Australians we are raising the awareness of disabilities.

Disability occurs when the structures we have created by society restrict the activities of individuals who have some type of impairment.  The level of disability encountered by a person is dependent on the barriers society has place in their path.  Impairments people experience may be physical, intellectual, learning, behavioural, sensory, neurological or psychological.  Not all disabilities are visible.

By using IDPWD to highlight the talents and achievements of people with disabilities we are showcasing to the general community how people with disability contributed to their local community and the economy.

Today the annual 'Gifted Exhibition' opened at the Drawing Point Gallery.  This is the third year I have had the privilege of being part of this annual event on the Ipswich calendar. I am now a reconginized artists in the Ipswich. My work is distinctive not due to my disability, but the colours I use and the appears of colours. 

A fellow colleague, Judith Baker likes to point out that 'once her art is hanging on a gallery wall, her disability becomes invisible.'

  

On December 3rd, come help celebrate the achievements of those living with disability.

Support & the NDIS

Now that participants and their families are given greater input into the design of their support packages under the National Disability Insurance Scheme, has the role of a support worker change? 

Perhaps I should explain what a support worker does first, despite the role being a around for over 10 years now, the job is often confused with that of a paid career.  Generally the term 'career' in  2017 is used to refer to an unpaid person who provides some type of 'support' or 'care' to an older Australian or person with disability, usually a family member.  The term 'career', implies that a person has some sort of responsibility for a persons well being. 

This may include responsibilities such as finances, medical needs, medication, diet, accommodation and general well being.  A 'career' paid or unpaid may also provide, personal care support, support in the community, transport, support with banking and shopping, social support or support to attend activities.  These types of supports have been separated by terminology for over 30 years and yet we commonly still refer all 'care workers' by the term 'careers'.

Just as not all people living with disabilities need assistance with their daily lives, not all people who need some assistance day to day need the type of 'care' given under the 'medical care model'.  The medical care model emerged from a system where people with disabilities were routinely placed in the care of a institution.  

The birth of the disability human rights movement gave rise to the awaking that not all people with disabilities needed the same level of care. In fact many people with disabilities could living independent lives in the community given the right level of care.  For example supervision with taking medication. This type of support was still viewed as 'care' and workers were still referred to as careers. 

This level of independence is different to those who need to live in supported accommodation.  Supported accommodation has many different levels, the highest level of support is dementia care nursing home units. These individuals need care at a level to protect their own safety and the certainly can not be responsible for things like medications and money matters.

Sadly some younger people with disabilities need 24 hour care to survive.  There community living options are very limited and they are either cared for in the family home or high care supported accommodation and nursing homes. The ndis recognises young people living in nursing homes is not appropriate and alternatives need to be sort.  

At the other end of the supported accommodation scale are houses or individual detached homes or unites that have some type of 24 on call support on site.  These residents may need very little 'directly care' day to day.  However the might need high degree of support.

The ndis is a system that finally puts to rest then one size fits all approach to disability care.  People with disabilities, their families and their supporters have made it very clear they not longer want to be made feel like patients. This was the pre-ndis model of care. 

As early as 30 years ago it was decided we needed another term for career, for those that only needing support or assistance. Yet many in the industry are still engaged as paid careers or refer to themselves as 'carers' or the job title PCA.   If you as me the term 'personal care assistant' is sit under the medical model.This doesn't really fit with being a paid employee of a person with a disability.

As the ndis moves away from the medical of disability through embracing the social model of disability.  The social model of disability, says it is not a person's impairment that disables them, but the structures society has created  It is the ndis direct roll to dismantle these structures. Services that support people with disabilities are included in the structures that need dismantling. 

While we need to rethink how we address disability access and broaden what falls under the label of disability access, the real challenge is to increase the knowledge of disability.  Under the ndis disability does not have a face, but many faces.  Disability comes in many different forms. Physical, intellectual, neurological, sensory, behavioural, physiological and dare I say it, attitudinal. The most disabling factor in mt life is the attitude of others.  Sadly support workers rank high on those who disable me.

Under the ndis the role of a care or support worker is to empower people with disabilities to achieve the goals the have set themselves.  Where the participant has a guardian or under the directive of the adult-guardian, then they may require some level or care in addition to assistance in their daily lives.  The last thing people with disability and their families want is protection 'form perceived threats identified by support workers'. 

The protective roll of a paid career is no longer consistent with the ndis legislation the delivers choice and control.  It is no longer up to a paid support person to decide what an individual with disability needs.  In an environment where participants or family members are now-self directing their own supports, the role of support worker and support agency has dematically changed.  

Services need to adapt to the new environment before they lose clients, because advocates like myself who were part of the Every Australian Counts campaign aren't going away.  The ndis may be rolling out, but our human rights and freedoms are still being breached.