Art For A Cause!

Purple At Heart

Proud to be purple and support World Blog Action Day!

Proud to be purple

I am ashamed no more,

It out in the open.

I have epilepsy I roar.

The shame and embarrassment,

 I no longer fear,

For I join a world wide force,

Year after year!

50 million suffers world wide 

we unite,

To bring awareness of a condition we no longer fear,

We ask you to ware purple, 

 on the 26th March each year.

Copyrights Debbie Chilton 2013

My name is Debbie Chilton and I am proud to stand tall each year and say I am a epileptic a neurological condition that a affects around 50 million people each year. For a percentage of us our seizures are not controlled by medication and we are challenged by the limitations and social stigma that still exists in society.  Purple Day was start be a 12 year old girl Megan Casidy, who asked her school friends to wear purple to school on March 26th as a symbol that she was one of them.  In solditarity the whole town wore purple in support of Megan that year.  Purple day is now celebrated internationally on March 26th each year.

As I seek to live a full life, I am supported by Epilepsy Action Australia, in thanks for their support I am holding my second annual online art auction to raise funds for the support the provide to people with epilepsy.  Some of the services they provide include: education for new diagnosed patients; online diaries to assist members track seizures, to enable specialist identify triggers and potential cause, online training for support staff and families as well as on the ground training to groups on request.

You can support my 2014 Purple Day fundraising efforts by visiting Debbie's Defense for more information or registered your interest in taking  part in the auction.(Terms & conditions apply). 

This post in support of World Blog Action Day, where bloggers around the world seek to unit to raise social issues and concerns world wide. You can search my October 16 archives to read my 2013 post. I hope you will join me in 2014 as the bloggers of the world unite in one voice to change the world. 

So go purple on March 26th!  

   

Some views in the NDIS

NDIS: Choices, Risks and Human Rights

Choice No Matter How Small

 Can Be Empowering 

The National Disability Insurance Scheme seeks to raise the awareness of human rights of people with disabilities, their families and those who support them. Among this group are some of the most at risk individuals in the country. Not to introduce the NDIS results in saying its ok for people with the disability to be continually placed at risk and have no opportunities or choices to improve the outcome for their own lives or the lives of the family members the live with. 

Current 'Risks' for Individuals with No Choice

Advocates who oppose the introduction of the NDIS fail to remember, how deeply floored the current system for disability care is Australia.  Somehow 'our fear' of the known is paralyzing us.  Even knowing the failings of the current sectors, its biases and chronic funding shortage, we are rejecting a system we not yet understand, simply because of the risks involved in empowering people to make decisions for their own lives.

Lack of Choice 

Leads to opportunities for others to abuse us. 

We seem prepare to ignore the current risks to people with disabilities, the finical strain that places on families, the restrictions people in occur around employment and thus income, because of the time and the fatigue costs associated to caring for an adult child with disabilities, some carers liken the current system to a lifetime prison system.

I find it difficult to address the failings of funding systems for people with disabilities and their related care costs and can only speak for my own experience in Queensland in where I live.  A system that is compared to a lottery game.  Receiving funding for your basic support needs is a game of luck and chance. The risk of injury, neglect and abuse and even death are very high.  I know that first hand that all too often you need to be at the point of dying or homeless to receive assistance.  It was my own risk of death and being trapped in a hospital bed that saw me rise to a priority level where by chance someone passed away and their funding came to me.  That is the randomness of the current systems in Queensland. I was potential dying at the right time.  

Sadly the person whose funding I received passed away be for they received any advantage from the funding I currently enjoy. This is the crazy chronic shortage of funding in Queensland.  These are the luxuries Tony Abbot isn't sure we can afford.  So you do not need remind me of the type of risks involve when we're addressing the rights of people with disabilities and meeting their needs.

Even small choices can lead to the empowerment of people living with significant to profound disabilities.

The UN and the Human Rights Commissions has Australia on its watch.  At last check the Australian government was failing people with disabilities in 30 different articles and Australia is on notice. The world knows people with all forms of disabilities in Australia are at risk with no opportunities to address this and what is our defense.  The NDIS and empowering people with disabilities and their families to have and to make choices for there own lives.

Current lack of choice can see a person with a profound brain injury in need of 24 hour care place in a nursing home, whether they are 55, 45 or 25. If that's how your care needs are funded that's your lottery and ticked to life!  You and your family are given no say.  Long fights to campaign for alternatives more often than not, because alternatives in Queensland don't exist.  

The institutional care of people with significant disabilities and diminished intellectual compassity increase the risk of violance, neglect, (e.g. Stravation), finical abuse more than any other type of support we currently provide.  When there individuals are unable to speak or mental health issues compound their ability to communicate, as system which offers no alternatives to these individuals, whether the have access to advocacy or not fosters an environment perfect for the human rights of people with diminish intellectual compasity to be abused. Unable to access the justice system or report crimes such as 'rape' or torture, the number of ways these people human rights are violated because of lack of choice escalates.

So do you still think giving people options and choices for their own lives is too greater risk?  Do you still want to assume a system that totally dis-empowers all people with disabilities with playing a lottery game with there support needs is safer than empowering choices. 

With empowering all people with disabilities and those who to support them to make choices, greater opportunities to give with disabilities access to advocates who can give a voice to someone who has had no voice before.  Even where that voice is around the colour of the t-shirt they waaring or the right to a girl to say I don't want to wear a dress, because of the way male staff look at me.    

Even allowing small choices, which individuals are safety able to make on their own such as what they like to wear can empowered them to take small steps to improve their lives.  No one is going to give someone who has been cared for all their life the choice to live on their own.  Even so I don't think a person who at 50 who has lived with other people with  disabilities all their lives who enjoy lining alone. So choices are always limited to our knowledge, experiences and understanding. As we have seen even offering no choice put people at risk.

     

Empowering Choices and the issue of risk under the NDIS

Choice without risks

Is not real choice

The roll out of the National Disability Insurance Scheme known  as the NDIS is set to be the champion of choice for people living with disabilities and their families, carers and guardians, who support them.

However what will this 'choice' look like? What happens when back choices are made? What role does the service provide play in duty of care? Does the person making the choice understand the choices the can make and the potential risks each choice can have? 

My largest concern around the NDIS and provision of choice and empowerment for people with disabilities is how dose a person with disabilities make choices about direction for the future when they have never made choices before?

How do we define choice?

Firstly we should define what choice is and perhaps isn't - real choice is made when the individual knows the options available to them and the conquences that each choice can impact on their lives.  Our choices have positive and negative conquiences. Ultimately the individual making the choice with be positively and negatively affected.

Ability to make a choice is dependent on the information available to us. Let's look at a simple choice: Ordering a meal at a restaurant.

1. How do I know all my options?
2. If there is a menu outlining my choices, did I need an assistance? 
3. Was that assistance available?
4. Do we understand the menu? Many times their are dishes on a menu I am not familiar with.  
5. Not everyone is literate - if reading is the only way to access the menu we many become dependent on recognition to make our choice.  Hence our choices become limited.
6. The price of a meal and my personal budget choices may influence my choice and pose limitations.
7. I have order from the menu to be told sorry we're our of prawns. So any dish with prawns is not available. Suddenly I find not all the information I needed to make my choice was available. (No safe guard)
8. If I chose a dish I not eat before I run the risk of not liking it!  Remember offering people choices has risks! Each of us takes risks every day. 
9. Eventually I chose what to order based on the information available to me. My meal is serve with chilli on top!  The menu I read didn't give me that information and as a result of being allergic to chilli I can not eat the meal.    

What things can influence our choices?

Even not being disadvantage by a 'disability' my choices have risks.  Sometimes when I order from a menu I have a support worker with me. As I am short sighted their are times I need the support worker to read them menu for me, suddenly I am dependent on my support worker to give me all the information I need to make an informed choice. What if that person decides only to read out the choices they would chose or they assumed I could afford.  Is it ok for a support worker to filter my choices?

Ability to make choices is redistricted by external factors. Thinking about our restaurant experience, our choices are bestirred by costs and personal budgets. In my case choice is also restricted by food allergies. In this case is a 'food allergy' a disability? 

Here we see how a person's disability, can begin to limit their freedom to make choices. We have not even begun to explore how the introduction of the NDIS increase choices and the increase in potential risks that may occur.

 Is it ok for others to limit out choice?

I always find discussions around 'duty of care' interesting, when talking to support workers.  I not sure if we're aware how often our personal values and judgments influence our interruption of duty of care.   

'Duty of care' issues are not limited to the role of a support worker. We will all experience duty of care issues at some time in our lives.  As parents we have 'duty of care', we take responsibility for our children's or those under our guardianship until they reach the legal age of 18.

In terms of 'duty of care', many of the responsibilities of a parent are around the issues of safety, finical responsibility and legal responsibilities.  No one is truly able to make any choice they wish.  If parents are found to be irresponsible in their 'duty of care, their are government agency who can step in and protect children who are continually at risk.

Our choices are govern by laws.

For us as adults, parents and guardians one of the things that governs our choices are the 'laws of the land' In terms of guardianship of children we may be responsible for this like teaching our children 'right from wrong', to achieve this we use discipline. This enables our child to begin to established boundaries in their lives. The child begins to learn that bad behaviour or bad 'choices' will result in some type of punishment. 

However not all unpleasant experiences are the result of bad or incorrect choices. As a child learns to walk, the will fall over and collect their fair share of  bruises. However if parents prevented their child from learn to walk out of fear they many be hurt and some how restrained them, then this would be deemed a fail in the 'duty of care' as a parent and the child protection agency would step in.

So the notion the we are free to make any choices we like is not founded. Of course every day people make bad choice and some people chose not to obey the law and this has consequences for them and the people around them. 

I know a man who chose not to get a licences as a result whenever he drove the car and chose not to stop and the red traffic light, his wife would be fine and lose points on her licence. As a result eventually as a result of this man's choices his wife loss her licence and she had to appear in court.

Even though this man was not penterlise by the law his choices still had repercussions, as a result his wife could not drive for three months. So what happens to the right to make bad choices or even brake the law when their is proven diminished responsibility.    

Do people still have the right to chose to break the law.  I guess the simple answer is 'no'! There are many incidences in the course of our life span where adult guardianship is enforce legally on another and and as a result of that their may be times when the adult guardian may be held legal responsible for lack of 'duty of care' and chargers can be laid.

If you are the legal guardian and carer of someone with dementia and who knowily  allow that person to drive or hand them the keys to the car, then you are liable in a court of law if that person has an accident and kills some one.  But what about areas which are not so clear cut. Where is the line between the right to choice and a parents or careers 'duty if care'.

As a person with a physical disability there are laws that apply to only a person with my particular disabilities. As I have uncontrollable seizures I am by law prevented from driving a car.  I would not chose to break that law.  However, also mobilized using my power wheelchair. Usage of this chair means I must comply with the same laws as those driving a car.

So I can not legally go out and chose to drink like anyone my own age. Generally I am compliant with this law.  I stick to my one legal drink known that may mean I over the limit due to other factors such as medication and what I have eaten.  All in all I like to think I am pretty responsible with my consumption of alcohol.
However, what if I was in the company of a support worker, whose duty of care states she will ensure my safety.  Does that worker have the right to stop me from buying the drink knowing it may put me over?  Even I admit that's a difficult call. However, if I am using my manual chair I maintain I have the dame rights as anyone else over 18, I am yet to find a worker to agree.  Not that I ever expect to test it, ultimately my personal budget is the restricting influence here. 

So we see even though the National Disabilities Insurance scheme is designed to empower people living with disabilities and those who care for them, these choices as all choices do have limiting influences. However if any increased ability to make choices for our own lives opportunities to make bad choices and negative conquences of the these risks increase. To empower people to make choices for the own life or the lives of a family member or guardian, means we will see 'some people' at increase risk.

The right to choice under the NDIS  

The National Disability Insurance Scheme is design to give people with disabilities and those who support them such as families great choice in the way they are supported and give greater emphases on individuals goals, personal, aspiration  and lifestyle choices. When we think about what this change may mean for individuals, families or even those who currently live "in supported accommodation" our person concerns over the increase risk to vulnerable individuals, who maybe unable to make informed decisions (remember our ability to make choices is dependent both knowing and understanding all the choices available to us), we are looking through glasses that are tainted by an historical approach to the way people with disabilities have been "cared for" and "protected" until now.

Historical all people with disabilities have been 'cared for' by the state, and all attempts to provide for their care and protection have been insufficient. The concept that people living with disabilities will suddenly be "unprotected" or "at risk" because the now have a right to make choices for themselves is incorrect. 

As we had seen, the choices we all make as individuals have a degree of 'risk' involved.  I like to ask support workers how they got to work today. "Hurh!" is the usually response.  What does this have to do with choice? "Did you "chose" to drive to work today? "  Some will say it was the "only choice" they had."  However the choice to drive or travel in a car puts anyone at anytime "at risk".  Does that mean we should ban all cars in order to protect people from car accidents. Of course not!

More accidents on the road injury and kill people than anywhere else. Currently people living with disabilities who are either care for by a family member of someone paid to provided their care aren't given an option on how to travel. We as rational individuals, equip with knowledge and information make choices for people with disabilities in 'our care' all the time. Without realizing we are in fact putting people at 'risk'. 

So I challenge the thinking around "risk" and the "fear of risk" that giving people choices and options for their lives under the NDIS may put people with "particularly those with intellectual disabilities" increases their risk.  As we have seen there are protections up in place by governments to protect all of us as residents of Australia and they are called laws. Which the majority of Australians keep. As we have explored in terms of the 'duty of care' parents have for the children. 

The introduction of the National Disability Insurance Scheme does not throw protect of individuals living with diminished intellectual compasticity due to their disability out the window, just because they will be more empowered to make choices for the own lives. 

In fact part of the changes occurring under the NDIS is to introduce new laws and better protection for individuals living with disabilities in our society. That is one of the struggles we have that we are judging a new concept based on what we currently know. However despite what we think we currently understand about the NDIS how it make improve lives or disadvantage certain  individuals, I think is skewed by our thinking on what the scheme is about.

The NDIS is not solely about providing the support needs and equipment needs  of people living with disabilities and family members who care for them. That is the biggest misconception we need to address!  While the scheme will now focus on the needs and the goals  of individuals or families, the NDIS is for all Australians. 

Primary the goal of the NDIS is to assist in the building of a inclusive society, where all of us are empowered to make choices.  I think where the problem lies in our lack of understand at what level this occurs and the process and support people with all disabilities will be given to make those choices. 

Yes people and their families are encouraged to take a 'wish list' into the NDIS, and I imagine that some of those things maybe, to move into my own home, knowing I can have a shower, when I want a shower. Or for an Austic child it might be, access to a phsyio, speech phologist. ot, support to attend school, transport to and from school, support to socialize outside of school hours and respite services for the parents, perhaps a family might ask for an assistance dog or communication device. 

However, the first safety check is What goal does this 'wish' help the individual achieve.  So an assistance dog, may provide an child with epilepsy, muscular dyspeptic or autism more independence from there parents and have some type of respite value.   Currently I choose to address some health issues caused by my cerebral palsy via hydro therapy at my own expense. Under the NDIS this will be covered and a physio to assess ongoing changes to my program I need as I age.  Currently is a guess and something is better than nothing, so that's a calculated risk I take by choosing not to have my therapy supervised.

So much of the discussion and debate has been around disability services and the hope for increased support hours, that we haven't stopped to think about the long term goals and how to address some costs associated with aging.  In the long term government assistance with hydro costs mad help lower support workers costs as I age.

So the NDIS becomes an life span approach to supporting those with disabilities, rather than how do we meet the needs of an individual now. These things are difficult to comprehend for those or us who have only every received one type of choice to our precieve needs, far to often it has been individual support where an assistance dog may of given enough support and increased independence of the person thus being more cost effective. 

More changes occur under the NDIS than a change in the way support is funded, so when our focus is redirected from the traditional care model we know, then giving people greater choice, may make more sense.

Initially the was some concerns about people choosing unqualified staff to provide support or services. How can we ensure standards are meet?  An example of house modification for those who become disabled.  The NDIS addresses this issue to require all service to be regesitered as NDIS providers.  So if my wish of hydro thearpy is approved under the NDIS the hydro pool I access will need to be registered as a NDIS provider.  The same applies to equipment, assistance's dogs and communication devices.  I can not pay my neighbor to do the housework from my package unless she was registered as a provider.

So while the power of choice sounds high risk, new laws and safe guards have been introduce and most trail sights have seen an increase in service providers, not a decrease five months in no takeovers or closes have occurred. So may of our precived 'risks' in empower people to have choice in how their needs are meet. Are based on not understand the National Disability Insurgence Scheme, not only changes the game, by the goals or type of game we are playing.  For all I know I might be talking about soccer and the National Disability Insurance Scheme might look more like a polo game. 

We are basing our fears on 'what we know'; personal experience, personal insecurities, guesses, and misinformation. Humanily understandable, but not particularly helpful as we journey towards the transition. 

The ability to make choice is dependant on knowing all the information and understand how those choices affect us as individuals, families, support workers, service providers and therapist or potential employers of people living with disabilities.  In Queensland we don't have all the information yet, nor do I believe people have got their heads around the revolution in the way people needs will be meet in the future under the NDIS. 

In this post I not begin to touch on advocacy, transport, access, justice, human rights issues, budgets cost or employment.  The change are mind blowing and much more complex than we can currently address. How this will even become my guide book to the NDIS I do not know answers seem to lead to more questions.  So clam down the jury is still out on the NDIS! 

The NDIS is not optional!

The federal government and Tony Abbot along with all Australians need to understand that the  National Disability Insurance Scheme (NDIS) is not an optional extra for Australia. The NDIS is a revolution this nation needs to begin to address the Human Rights of people living with disabilities and their families.

The scheme in its current format only begins to address some of the Human Rights and years of neglect, people with disabilities and their families have experience. Assistance to have our daily needs meet such as toileting, showering, feeding, transport and equipment needs are not 'optional extras', when they can be afforded. 

Every  human being needs water, food, shelter and love to survive.  The introduction of the NDIS only begins to address these very basic human needs for people with disabilities.  Without support people with disabilities can not get out of bed, go to the toilet or eat.  Some in our community, speak about the scheme as if luxuries were being provided to people with disabilities. Needing someone to change your incontinent aid is not a luxury.

Excuse me for becoming blunt about the daily living needs of those of us have disabilities, but until the community and all members of government fully understands the urgent need to address the Human Rights violations occurring in one of the wealthiest nations in the world, then we have a problem. The UN knows it, the International Community knows it,  The government knows it, and its time the Australian population knows it too.

If I posted a picture of a women in a nursing home bed, who hadn't been changed in 24 hours and was lying in human waste there would be outraged. Outrage for all the wrong reasons. Outrage that I exposed this lady to the public eye, not out rage that it was occurring! 

When we politely discuss the introduction of the National Disability Insurance Scheme, we tend to hold up the champions and it ideals. While the ideals of the scheme are a huge leap forward in securing the some of the Human Rights of people with disabilities, it does nothing to address vicolance against women with disabilities living in nursing homes, fails to empower women with intellectual disabilities to access the justice system, fails to prevent the imprisonment of men with intellectual disabilities unfit to stand trail; fails to protect unborn children with disabilities from termination and continues to fail to address the needs of people with disabilities living in nursing homes under the age of thirty because the cost of the care is too high.

As we debate what the scheme should cost, what it was expected to cost, how to fund the scheme for who and to what degree, we miss the injustices occurring! Like it or not even if the NDIS is fully implemented as designed by the productivity commission only some of these human rights issues are address. 

When I hear we might not be able to be afford, so these are trails the can be stopped. . . I cringe because people have failed to understand, the human rights message that is the Everybody Counts Campaign.

We here much about the costs and the increasing pressure the blow out costs with place on the budgets around the country. We forget that the National Disability Insurance Scheme will only partially be funded  by the increase to our medicare levy and the viability of the NDIS is also dependent on our state leaders. So much about the scheme, its role in improving human rights and funding arrangements is misunderstood. 

For many in our community it s simple change in funding arrangements, but talk to those who are already benefiting from what we were told was a roll out . . . and we realise the scheme dose much more than fund the basic support needs of people living with disabilities. The NDIS hands them the keys to enjoy ever aspect of life as any other member of the Australian society.  It acknowledges  people with disabilities have the same rights and that includes sharing a house and a bed in that house as a couple, whether they a married, defatos or a same sex couple.  Same country then we have the same rights!

It sounds a bit different when we say, Hang on we're married, we want to share the same bed . . . we need a modified bed to do that. Why should the government on fund beds designed for single people living with a disability or only if the were married.  If we're going to call it equality make us equal. If its only tokenism wrapped up as equality, we have a problem  because with what is a luxury and what is not.  

The equality that the National Disability Insurance Scheme can bring and continue to build on.  The opportunities for early intervention, access to better therapies, communication devices, mobility aids, transport. education and employment opportunities are just a beginning on how the scheme will improve the quality of life for Australians living with disability, their families and the community as a whole.   Mr Abbot the NDIS is not optional, so stopping talking like it is!

Australia again we must united until Every Australian Counts!  

Dear World,

Dear World,

I want you to understand my disability doesn't define me anymore than the color of you hair defines you.  The only thing I have in common with other people living with disabilities is I also live with a disability.

I am not a child trapped in a woman's body . . . My mind is not that of a child. I am an adult woman. Living independently in my local community making my own choices as you do . . . 

The only time when I embrace child like thoughts are in my stories through my characters who are created to communicate adult concepts to children, concepts that a child can grasp but adults, perhaps through conditioning are prohibited for understanding.

I like most of my friends (yes! Despite what you think I have friends and the majority of them are what you label "normal") packed my toys away many years ago . . .

Well some people might argue I have only swapped the value of my toys, my pencils and paints just costs more than those of a child . . .

But my creations I call works . . . are not child like in nature . . . they are complex . . . 

Well thought out and placed to please the eye! 

And contain adult themes . . . 

My work only become childlike when I determine I want to play and experiment, to capture what I imagine to be child like joys . . . 

I am an adult, with the mind of a adult, living in an adult's body, I act and behave in an adult manner, I work like other adults, I pay my rent, taxes and other bills to like an adult, I engage with adults with other adults, I read adult books, ok so I read children's books too! In the name or research of course. 

So I see world some of the complex details of this I'd like you to know, are still beyond you.  So I will talk to you as a child and leave disability awareness to the kids! Because despite what you think kids get me!   

Debbie Chilton living with CP 

THE YEAR IN REVIEW

Season’s Greetings

As we celebrate the birth of the ‘King of kings!

LEADERSHIP IN THE COMMUNITY

In December last year I joined the Leaders For Tomorrow Program and I am about to conclude a year that was incredibly challenging and rewarding. The former Labor Government set aside funding to train 200 people with disabilities in leadership skills. A leadership role could be any one of the following areas’ employment, sporting, community, the arts, and government.  I was privilege to  be chosen to gain skills to equip as a community leader.

 One of the primary roles I took on in the community was joining the Disability Community Awareness Team. Under the leadership of Peter & Linda Tully, Amanda and myself seek to promote community awareness, promote a sense of community through supporting the Ipswich City Council’s Disability Inter-agency Network, Assisting in informing the community of the changes that will occur in the disability sector when the National Disability Insurance Scheme is introduced in Queensland in 2016.

Of course the highlight for us a Disability Community Awareness was to the signing between the Federal Government and State Government’s funding agreement for the National Disability Insurance Scheme. As we attended forms and information sessions, the communities confusion, frustrations and celebrations soon became clear.  With trails in five states still underway, many workings of the scheme here in Queensland are yet to become clear and with a change in federal government questions, funding arrangements, administration needs, budget costs and even a finial blue print is yet to be arranged.

For many seasoned campaigners’ like Peter & Linda Tully and the members and staff at the Queensland Disability Network the work to shape the National Disability Insurance Scheme continues as does the need for public information sessions. 

Other highlights included the Fresh Futures Market and Disability Awareness Action Week - Gathering Around Ability family fun-day.

Building Leadership Skills

“Working toward building an accessible community for all Australians remembering we are all ~original works of art ~”

Graduation Day 3rd December 2013

When I joined the Leaders For Tomorrow Program I was very velar on the leadership model I wanted to develop.  A style of leadership that has stood the test of time and founded a major world religion; Succession Leadership.  My goal is not to build an empire or even a company, but to build up and encourage other people in the community to take on leadership roles.

So hopefully people are not hearing too much about Debbie Chilton, but watching as she display’s leadership,   interacts in the community, feeling encouraged and inspired to dream a little bigger, think outside the square, and decide to take their own leadership roles.

For some the leadership role maybe a youth group leader, for others it may be on a community board and another as a para-omypilican. Creating colons is unsustainable.

This is the same model at Community Access Transitional Services. C.A.T.S After six years as vice-president I step into the role of President. We continue to support young people with disabilities to build a lifestyle of their own in the Ipswich Community.

My board role in a real sense allows me to model leadership to young people. They may never join a board of management, but the crave out their own leadership roles from the client feedback ground, environments, and the performing arts.        

Highlights

The challenge in selecting this type of leadership model is how to provide natural opportunities to connect with people living with disabilities with our a job title. The answer was in the end quiet simple . . . ART!

ArtISability is a professional visual arts development program for artists living with disability.  These are a series of workshops I am coordinating to enable these artists to develop specific art skills, build networks and create links to the local art community. On my second attempt I obtained a Regional Arts Development Fund Grand through partnership with the Ipswich City Council and Arts Queensland to host a pilot program here in Ipswich.

Together with Judith, Emma, Silvia and Donna, we have designed a program to link local artists living with disability and mental illness with a host of arts activities in Ipswich and beyond.

Emma Fitigarld is a young artists living with a disability I have been mentoring during the process of designing ArtISability. As a graduate in visual arts Emma’s, local art connections and knowledge has lead to a greater community interest in the ArtISability Program.

Emma is passion is for abstract art and teaching. She joined me as we coordinated arts and craft for people the Disability Action Week Fun Day!

Emma, Nick and myself

‘Putting our hands up for ability!’

The network process along the way to creating ArtISability has leaded me to places I never dream it would.  I had the opportunity to attend Arts and Disability meeting place in Hobart where I presented my ArtISability concept to delegates and got a bit of a crash course into life as an artists with a disability and arts worker in the arts industry. 

I am also currently completing own professional development program with Access Arts Queensland.  These two opportunities have enabled me to network with artists and arts workers on a national ‘stage’.  Working with a cross section of very talented artists in many disciplines and joining the Rising Star Program.

The Journey

Little White Lies Production

Based on the tiny lies we tell ourselves as artists and people living with disabilities.  As a writer I excel at lying! Why was reveal in my preparation, fully intent on a mission to state my place as a visual artist? I arrived to find myself amongst a rat bag story tellers like myself.

The eyes are the gate keeper between our private selves and person we reveal to the world. For me this picture is a symbol of the struggle to gate keep as I develop my leadership. My ability to tell stories shows as a author, poet, visual artists and performer. So at times the leadership journey has been hazy.  Creativity remands the connection point and leading the way the goal.

So along the way I have created . . . 

   

For Terms and Conditions see http://doodlesandribble.blogspot.com.au/

. . . Had my first art auction and raised money for Purple Day – Epilepsy Action, entered the Fine Arts Section in the Ipswich show and sold some other work along the way.

Shop front window

Art Exhibition

To round out my leadership training I am doing a few subjects at Brisbane Institute of Art.

On the 6^th December I attended the opening of our 2013 Student Art Exhibition, Upstairs/Downstairs.  The Institute is promising me a lift will be installed in 2016!  So I’ll have access to all areas and all classes to complete my Diploma of Visual Arts.

Drawing from the visual world. . .

   

Student Art Exhibition 

Upstairs/Down Stairs 

"Child's Play by Debbie Chilton"

White and blue Pictures

Lady of Leisure 

My works can be purchase from http://doodlesandribble.blogspot.com.au/ and can be paid through PayPal or direct debit you may also be interested in my facebook page https://www.facebook.com/DoodlesDribble. Or feel free to contact me direct.

Doodles and Dribble:

ABN: 44 359 426 307

PO Box 483

IPSWICH QLD 4304

Telephone: (07) 3281 3218 or 0421 401 788

Email: chilton1968@bigpond.com

Doodles and Dribble Art Studio

Viewings by appointment only!

 On (07) 3281 3218

You are always welcome to come view my art at my home studio and pay the old fashion way in cash!

My work also has recently been published by Embracing Anything is Possible and can be purchased at the following link.   http://www.embraceanythingispossible.com/diary-and-calendar-shop/

A great way to stay inspired through 2014 and provide support services for people living with disabilities, who current receive no government funding towards their support needs or respite for their families!

Merry Christmas and best wishes for 2014!

Debbie

Nelson Mandela 1918 - 2013

Tribute to Nelson Mandela 

Nelson Mandela 

1918 - 2013 

Painted by Judith Baker

Judy's Website Art of Aquarius 

Visionary

Freedom Fighter

Nobel Peace Winner

Former President of South Africa 

Personal Hero 

My awaking to the political climate in South Africa and the social injustices the natives suffered as a result of English domination happen in 1992 when I read Bryce Contrary's Power of One. Mandela himself needs not introduction as the freedom fighter through personal imprisonment gave all to unite a nation both black and white! 

"No one us born hating another person because 

of the color of his skin,

or his background, or his religion. 

People must learn to hate,

and if they can learn to hate,

they can be taught to love,

for love comes more naturally 

to the human heart than its opposite."

Nelson Mandela 1918 - 2013

A personal hero who help shape the compassion I feel for my fellow man.  I do not mind who I was born but I love the person I have become because of those who have walk before me a faced there own injustices. As I remember the life another remarkable human being, I am humble and inspired to continue to work towards my own dream to see equality and social inclusion of all people in Australia.

The best tribute I can give to Nelson Mandela is to spread his message of equality.

In writing this post I join with bloggers around the world inspired by Nelson Mandela and others who walked before us, to raises social justice issues which still need highlighting.  The march towards equality continues. 

Possibility of reform without education and consultation?

Can reform happen without an education process?

In short that is what the current federal government is hoping to achieve with the National Disability Insurance Scheme or NDIS. Despite what is popularly believed, the NDIS is more than a change in the way support needs for people living with disability and their families is funded.

True! Currently from July 2014, the NDIS will be gradually rolled out across Australia, and will cover all Australians living with a significant permanent (life-long) disability by July 1019. It is hoped that the introduction of the NDIS, will end the current unjust way funding is distributed.

It is also hoped the there will be greater access to services and the type of services people living with significant disabilities and their families can access regardless of where they live in Australian.  The NDIS has been promoted as ‘giving greater choice’ to people living with disabilities and their families. However, it is also predicted that the NDIS will provide a more competitive environment in the disability sector, creating a ‘market place’ environment. We know with competition there is also the threat of monopolization of the market place, as is the case with the two supermarket giants in this country. 

Monopolization in a particular corner of any given market, may in fact lead to a reduction of choice and this is something disability advocates need to be on guard about, as it threatens the core value or choice on which the National Disability Insurance Scheme was founded.

This is because the NDIS is not a funding reform. It is far more ranging in its scope than a change in the funding agreements between the federal and state governments, that see the federal government through an increase in the Medicare levy, fund disability care for the first time.

This is the first important myth for us to comprehend as we look towards the introduction of the NDIS.  This reform in not about funding!  While there will be an increase in funding available to those who need it and an increase in the number of people ‘eligible’ for direct support services, therapies and equipment needs, this is not the core of the NDIS. Yet in terms of the public education and information released I have seen so far, much of it has been around funding, changes to eligibility, changes to the way people are asses when applying, facts & figures around numbers and amount and debate of its costings and whether the Australian economy can afford it or afford not to induce it.

If the NDIS is not a funding reform, what is it? Essentially, as I understand it the NDIS is about social reform.

It is a major shift in the way we value people with a disability in this country. By acknowaging that people living with disabilities, their families and full-time carers live in poverty while they struggle to paid for medical expenses, early intervention therapies that can increase the quality of life the children or loved one who becomes disable can enjoy. It is about people with a disability and their families joining the social fabric for what makes Australia a great place to live.

The NDIS reform needs to remain a fundamentally a reform on how we view people with disability in this country.  The NDIS is about equality for all people living with a disability, their families and those who care for them. Until those standards are reached nationwide the work of NDIS campaigners with not be completed.

Funding reform and moving people to be funded under the National Disability Insurance Scheme and giving them dignity of choice for the first time is only half the battle.  Dignity of choice and direction over their own lives can only be achieved if ‘real’ choice is available and all activities available to other Australians are accessible to those living with disabilities and those who care for them. In essence the NDIS promises to provide real choices for real people!

This reform for the first time recognises the rights of those living with disabilities have the right to a choice in lifestyles that is consistent with every other Australian. This is the message that I think has been lost as we discuss and debate the economic value in the change for funding arrangements for the lifetime support needs of someone living with a disability.

In real terms the NDIS is looking at things like access to the education sector via providing specialized education support; access to a range of different therapies support not just what is popular of cheapest, we want to see an end to standard service and a choice in the market to open up; A choice is mobility aids and communication devices that increase the person’s ability to access and communicate in the community; physical, social and psychological access to the community in which a person living with a disability is a key player in the ability to deliver the NDIS reforms; access to employment and accommodation choices, being able to eat as a family at a restaurants and access holiday accommodations and destinations without needing to worry about access issues.

It is the change is the way we as society view access issues that pose and major threat to the NDIS reform process, where no longer worried about the legal access requirements for new buildings. Our biggest hurls in terms of access, is changing the attitudes of everyday Australians towards people living with disabilities and their families.   

While the tokenism attitude still occurs (like disable access toilets being used as storerooms, ramps with incorrect gradients, signs without brail or voice information, abstance  for captions for chimera goes, token ‘disabled’ employees and a inaccessible public transport system for people with disability) the type of social  inclusion that the NDIS reform aims to embody is still unattainable. I don’t think Australians comprehends the type of sweeping reforms that should  result  due to the NDIS, nor do I think we have the combine attitude to accept all people with disabilities as equal members of society.

We it comes to people living with disabilities, who they are; what they look like and especially what they are capable of achieving, I think we all fail in our correct assessments.  I am proven wrong everyday by the young people I work with.  They learn and comprehend things I think we not possible.  Traditionally thinking of what people with disabilities particular those with high intellectual process challenges are very limiting. For the NDIS to work our personal concepts of what is possible needs to explode!  I say that as an industry insider.  How much more will the general public struggle with the social reform that is the NDIS.

If you believe the government that the delivery of NDIS reform has began you do your maths and quick realised the focus is solely on the funding reform.   Funding alone can’t produce social change. We have seen it with smoking and drinking, Increase through taxes incurring prices rises do not work alone.  With finical reform needs to be public education to challenge along held misconceptions like it’s ok to drink while pregnant.

So how does the government think it can bring in major reform regarding the rights and choices of people with disabilities without any major advertisement on its reform processes?  Removing someone from the disability support pension and providing them with free taxies to get to work does not address, inequality in the workplace, the historical under employment of people with disabilities, the fact the many work places are physically inaccessible, yet alone the need to address what disability actual is!

Simple basic facts like people with intellectual disabilities can have a basic conversation to enable them to tell you how they want the hair cut.  The majority of them are able to have a conversation way beyond that complexity.  What amazes me is this perception is if a person is non verbal the do not functioning intellectually so there is no point talking to a non-verbal person and thus it becomes its acceptable to treat them as a non human being.

If retail staff, don’t want to talk to me, then how does the government expect me to go to a job interview, let alone be employed with uncontrollable seizures.  I can’t help but question some of the social reforms that are targeted by the NDIS and employment targets and thus the premise on which the National Disabilities Insurance Scheme is costs on is comprised.

Real reform for real people such as the NDIS needs education and disabilities awareness to be addressed.  Anything else denies people living with disabilities true equality.