Travelling the NDIS Road

On The Purple Road

This week I spent time with my friends and family as I celebrated Christmas. As usual this time of year brings reflection and resolutions. 

Reflections

The biggest change in my life this year has been the transition to the National Disability Scheme, know as the ndis. This scheme is the new way people with disabilities and their families are assisted in their daily lives. These types of assistance or support may include:-

• Help at home
• Support in the community
• Respite care
• Life skills training
• Early intervention programs 
•  Group activities
• Equipment
• Home & care modifications 
• Enhancing independence
• Job supports
• Medical aids
• Assisted technology 
• Threaphy such as physio, speech, OT, behaviour management, counselling and arr thready.
• Supported accommodation

Each participants package is decided on their ndis goals (activities or outcomes); the family dramatics (or informal supports); the support needs of the family as a whole; and assistance needed to achieve the participants goals.

ndis goals are based on the types of activities the family and the participants wishes to engage in or the things you want to do. Not the services you want to use.

Once you receive confirmation of you package you are able to then supports you want to access. For some participants day to day life will be unchanged while for others it may be life changing.

My ndis goals are around establishing my art practise and introducing my work to new audiences.  Someways my package has assisted me with this goal are:-

• Engaging a support network to support the demands of my art practise and my Ignite Artists Network. Choosing support times around the creation of artworks.
• Employing specialised art support to work towards group and collaborative art exhibition.
• Purchasing a new powerchair to allow me to work more effectively in the community. 
• Empowering me to self-direct my own staff and supports.

One of the key reforms the ndis introduces is to encourage families and individuals to participate actively in the community. I achieve through running my own art business and being involved in a number of community activities: such as Ipswich Rocks.

Create or decorate rocks; hide them in local parks; alert people to where your rocks are hidden. find rocks hidden by others; snap it and post it to facebook; then hide the rock in a different places. Ways you and your family might engaged or engaged in local community are:

• Being involved with a local support provider(s); participating in sporting and social groups or attending activities;
• Developing life skills: this may be through a support provider; one on one support; or provided in the general community.
• Continuing education: you or your child may be at school or studying post school. So you ndis goal might be to finish your education;
• Training, job training; looking for work; employment or volunteering:
• Sports and recreation: this might be a camp for siblings as part of a school holiday program; camping with your support provider; play sport in a local community team; going swimming with a support worker.

These are some of the many ways participants and their families might chose to engage in the community.

NDIS Choices     

The main steps in establishing your supports under the ndis are:

1. Pre-planting - Understanding what you do now: or the types of activities you want to do. (These will become your goals)
2. Meet with you planner - Confirm your ndis goals; decide how you want your packaged to be manage; discuss your goals and daily activities; lifestyle; current supports (including medical and technical aids); discuss things that will enhance your independence and lifestyle; highlight where you think the gapes in your supports are.
3. Plan approval -you will receive a copy of you ndis plan that will set out your budget and what the money can be spent on. Things in my budget are: Plan management; Equipment and maintenance; transport allowance; improving daily living and core supports. Core supports are supports provided by a disability support provider, such as centre based supports, in home supports; community access; respite and recreation supports;  If you are not happy with your plan you can request a review and making an appeal. ndis is about empowering people with disabilities and their advocates to speaking up.
4. Selecting you providers: Your plan in about you and your goals not the supports you want to use. Once you receive your plan and thus your budget you can speak to your current provider(s) or new providers about the services you can afford to purchase. 
5. If he ndia is managing you package on your behalf your LAC will assist you with this process.  Their are many ways participants can chose to have their package managed.  The person or organisation assist you to manage your package can also assist you in talking to support providers and navigating support agreements or you might be self managing like me.

Today sees the completion of the roll out for the ndis in Ipswich area, supports for Ipswich residences is now paid for by the ndia.  The roll out of the ndis across Australia will continue until the end of 2019 where all assistance for people with disabilities is provided by the ndis.

Participants and their families have had varying experiences with the introduction of the ndis. Some participants have experienced little change to the services they are accessing, it was expected that many participants would continue with their current providers. For others like myself the ndis has been challenging, empowering and life changing. 

Transitioning to the ndis has brought much to my life, flexibility and supports and the way I use them.  Not longer am I lock into x hrs of in house support and x hrs of community access supports, gone is my 8 o'clock curfew. Currently having all my core supports with one provider means one roster. As I am partial self-managing I am no longer obligated to use services from disability support providers. 

I have been engaging a small family business to help me doing some projects around the house and install raised gardens beds. For me the ndis has been very much about accessing the community and improving my health and well being. From next week next week I am locking forward to using the gym and physio active.

Looking Ahead 2018 Goals

My next solo art exhibition opens on the 9 th February with flexibility in my core supports in the next six weeks I will be able to access more support to put my exhibition together.

In The Melting Pot

Drawing Point Gallery

Opening Night 9th February 

Exploring Dirvesity

    

One of the roles I really enjoy is being and advocate for other people with disability, especially when it comes to accessing the arts. I achieve this in a few ways through my business Ignite Artists Network; Representing Queensland Supported Studios and empowering artists with disabilities; being involved  in promoting participation in the Ipswich community for people with disabilities; and through the art work I produce.

Resolutions:

Many people in the general community still struggle in their understanding of 'what is disability' and 'how does it impact on a person's life.'  To a large extent our understanding of is based on they way we as individuals encounter disability. For some when they think of disability they associate this with welfare cheats and fake injuries; for other it is the injuries themselves - physical disability is very visible; for others the think of people with intellectual disabilities they see out and about; or the kids that attend special school.  

All of these are the face of disability and many more disabilities are unseen such as epilepsy and Asperger. Disability is define as an impairment that restricts normal functioning. Just as no two disabilities are the same; not two people are limited by disability in the same way.  There are many other factors that determine abilities and the way the disability impact's an individuals life.  The many stereotypes we hold concerning disability are in fact a typical.    

This is the very reason Australia is transitioning to the ndis.  Time and time again approaches to disability support based on generalisation and stereotypes have failed. Individuals with disabilities need be supported as individuals.    

My goal in 2018 is to promote this message when it comes to disability their is no norm. It is not the person's impairment that disables a person it is the barrier both physical and other wise we have built as society.

The ndis has come with many challenges of the community and inclusion, for employers and accessible; for service providers and changes to service delivery; for the sector and the empowerment of participants and to the participants themselves and learning to voice their choices.

Readers of my blog know the many frustrations I have faced in the co-ordinations of my support. Some support providers are struggling with both the increased demand for services and the shift in buying power.  A years end I see many positive changes and over time if participants and their advocates are able to voice their choices.

In 2018 I join he ndis community compasity building committee to support providers and business to embrace the objectives of the scheme,

My hope for 2018 is to see the ndis evolve to stage where all of us are empowering each other to create the change the ndis was designed to create.

Keep walking towards your best life in 2018.  .  

Scary stuff a world without rights

Human Rights Obsolete?

In the absence of truth

(A law to guide use)

Their is no right or wrong,

and the need for A umpire 

is removed.

It seems some of our government officials have decided our country is performing so well in upholding the rights of Australia citizens and residents that we no longer needs a watch dog to ensure these standards are maintained.  The NDIS in NSW has argued that since the introduction of the scheme is now ensuring the rights of people with disabilities the role of disability advocates has become redundant.

Recently I had a discussion with a colleague about the validity of the human rights at all.  Who decides what is right and what is wrong anyway?

It is my personal belief the smoking is wrong and removes the freedom of others to be in a 'cigarette free environment'.  Someone who is addicted to this legally drug may not agree.  Give recent changes to the laws around 'where you can and can't smoke.  Seems to point to many others sharing my beliefs.

This gives some evidence that there is a sense of 'what is right' and 'what is wrong'. In Australia this is know as the 'law'.  Let's take the example of murder.  Australia law makes it illegal to take the life of another person.  So one might ask 'where the truth behind that law has come from?' 

Is or should the law be based on a general consensus of what is right?  Is that how truth is decided?  On moral consensus?

So this posses a difficult question what is moral is a society where their is no absolute truth and I am not allow to decide on right or wrong?  

Who then has the right or moral responsibility to set the law?  The government maintains the citizens of Australia give them this responsibility where we vote.

'Morality' is based on the principles of what is wrong and right or bad or good. It seems Santa Clause may have some experience is this area.  However what does he and his elfes use to measure good or bad?  Is it now political correct that Santa must not label any one 'bad'.

Gee, now I in hot water, if I am using Santa as a point of reference as their are many in our community who don't celebrate Christmas and it is becoming political incorrect to say Merry Christmas were should be saying Happy Holidays.  Even Christmas has been reduced to just time out.

So my endeavour to use Santa as my point of reference for what is 'right and wrong', might not be helpful.  This tends to support the general consensus should give rise to what is moral and what is thus lawful. However I not willing to be defeated the must be something that underpins 'what is right and wrong' under the law.

Personally  what I consideration moral or ethical are based on my Christian beliefs. Beliefs that are found on the Bible. During 2017 I have been corrected on more than once of the relevance of the Bible which I still personally belief is the Word of God and there for The Absolute Truth.

Some will argue the the bible no more than a 2000 year old text  that is no longer relevant in today's society.  The recent debate on same sex marriage highlights this.  'Christian law tells us that marriage is between man and women.'

The bible from its opening page spells out the different roles of men and women.  It said God gave women to man as a companion to care for his needs, and to man he gave the responsibility to care for the women and teach and correct her in the ways of God.  Both man and women are accountable to God by Christian law. 

Claims that bible is no longer relevant due to it's age a faulted, on the grounds that statement is incorrect. The text which Jews refer to as "The Law or Truth", that Christians refer to as Old Testament - or Law establish by God"; That Muslims refer to 'claiming the truth on Allah;  That Jehovah Witnesses "Inspired by god and useful in the teaching of the members' 

This ancient text which four out of five world religions claim to hold some version of "The Truth" back dates to prehistory. It was used by Jews and Muslims long before the birth of Christ.  The bible itself claims to be a record of history,  In the beginning . . . The Old Testament points to the New Testament where the convenient between man and God was established, and this is what today's law and order is based on.   

Attempts to dismiss these ancient teaches that are clearly  far older than 2000 years.   The bible has more original manuscripts that any other historical text written at the time.  Yet some many are willing to dismiss its validity and thus relevance. Much of the historical context is claimed to be fiction and the new testament fabricated by by the early Christians church. However does its 'law' still have relevance today and is this where the principles of morality derived?

The law in the bible is based on what has become known as the Ten Commandments.  These are said to be give by God (Jehovah/Allah) to Mosses.  These were the laws God asked the Israelites to keep. This is a coverent or law between God and his people,

This law or code of conduct proceeds Christianity by 4,000 or more years, and many were following this text long before the birth of Christ and the Christian Church.  The bible as we know it today is a collections of texts written over a period of thousands and years. And was canonised by the Church of Rome in the 5th Century. So while Christianity is almost 2000 years old the current form of the book referred to as the bible. 

Those claiming this text is irrelevant can't even ague on historical truths, need a lesson or too in Ancient history,  A cannon is a text or group of books used by religious groups as 'rules' or 'measuring sticks',  Australia was found by explores who professed the Christian faith, our forefathers chose  to use the rules written the this text as the base of the law as we know today.

The bible is still refer to as the bases of our government procedure. Law and order needs to have so bases. In a moment we will look at the ten commandments with all religious except Buddhism acknowledge as being the law or moral code on which their aceint text are based and canonise.

As I Christian I believe the true author of the bible is God,  Just as he ordered Moses to write down the law.  He gave the words to this people.  A convenient between God and man.  The Abosolute Truth to which I refer to as being the bases of Australian Law.

Since I have established most of the worlds population believe the ten commandments give us our moral code. This is the reference  point for morality - 'What is right or wrong; good or bad."

Ten Commands 

1. You shall have no other goes before me. 
2. You shall have no idols.
3. You shall not take my name in vain.  
4. Keep the Sabbath holy. 
5. You shall honour your father and mother. 
6. Do not murder. 
7. Do not commit adultery. 
8. Do not steal. 
9. Do not bare false witness. 
10. You shall no covet. 

The first four commandments pertain to God (Holy Trinity, Allah and Jehovah) and his covenant with his people. Love the Lord your God with all your heart and mind.  This about respecting God and his law.  That respect extends that Australia Law.

Unless you an atheist most people believe in a higher power or supreme being, so the moral code that steams from the Ten Commandments would also pertain to these people. The commandments are almost universally accept as a code of conduct.

The remaining six commandments relate to the respect for other people and their property and pretty much unpin all our laws and the universal law guarded by the United Nations and the International Court of Law.  

The International court of law hears cases such as war crimes.  Their is a general consensus that even in times of war their are some acts of crudity that are not accepted. Such as unlawful imprisonment of innocent people, crimes based on gender, race or religion. detion without trial, mass murder, especially through the use of chemical weapons. 

Leaders of countries cannot do what the want.  They are accountable to their allies, the UN and the International Court. The League of Nations formed in 1945 following world war II this was the forerunner of the United Nations which now has 91 member countries. If was founded to try to maintain peace and security. 

The Human Rights Council was the governing body established by the UN to protect the human rights of the citizens of the world. The Charter of human rights is based on the premise that the citizens of the world were all born free and equal. Thus all citizens of the world must be treated with dignity and respect. No discrimination can take place on the bases of gender, race, age, religious beliefs or perceived disability.  

Thus the human rights council is responsible for up holding the principles of what is moral right, ethical and decent.  Which I would ague is founded on the ten commandments. It is the UN role through the human rights council to whole the nations of the world accountable for the way its citizens, residents and intended residents are treated,

I believe without such account ability through the Human Rights Council and the respective Human Rights Commissions in each member country that the moral breakdown in modern society would our.  

For me now more than ever disability advocates and human rights campaigners have a greater role in holding the decision makers accountable for ensuring all Australian residents and those who visit our shores are treated equally under our laws. 

Remembering there are still residents who because of disability, illness, race, religious beliefs, those with literacy and language challenges  or even legal migrates gents who have no say in developing of laws or accessing the Australia legal system. Every Australia has a right to be herd ans a right to defend themselves against accusations.  No one should be in custody or given pardon without accessing our judicial system.

No where is it more important to voice our collective objection than for thus who seek refuge and asylum in a propitious nation like Australia.  Law breakers or not these people to have the right to tell their story before we collectively say they are wrong.  If the Human Rights Commission is removed then who become our referee?

Its all scary stuff if you ask me. 

  

         

  

NDIS - How to talk the talk!

It seems we have forgotten the National Insurance Scheme is not about money, not about care and it certainly is not a compassionate response to disability. The language used by some referring to the ndis is still exclusive of people with disabilities, society still makes it very clear we are less. 

We still have a charity model of care when it comes to disability care.  I am my own carer and don't need caring for.  My worker was highly insulted by this information on Saturday.  Yes there are times in my life I need care.  Like during and after a seizure or the care we all need during period of illness. The whole point of developing the ndis was to exit the previous medical model where people with disabilities were made to feel like patience. 

Many times I have share on the human rights issues that help us see our response to meeting the support needs of people with a disability need to be revolutionised. The ndis is meant to turn our thinking about the issues that needing addressing in the lives of those living with disability.   Instead of looking at the disability the  ndis was to look at the individuals hopes and dreams and what they wanted for the future.

The ndis plan is now based on the goals of the participant or what the families hopes are for the participants they carer for.  Care is now the primary the responsibility of a legal guardian not the government, in my case that is myself. Supports now ideally empowering families and individuals to live a quality of life, Through enabling the participants to chose their own supports and this was my planning experience.

The ndis planning process engages with participants and families to choose how they would like to be supported to live full and rewarding lives.  In the lead-up to the induction of the ndis there were concerns that people with disabilities do not have goals.  'Goals' was a the term chosen to describe the activities that participants chose to engage in, with the focus on what individuals  enjoying doing. 

The trouble is we live in a society that perceives the lives of people with disabilities are very different to others.  People with disabilities are outsiders that live on the fringe of the community.  This is not correct and certainly not the vision we wanted the ndis to project. 

In setting out your participants goals in the ndis plan becomes a  powerful statement about who the participants is and how they map out the future.  

My goals . . . I am an visual artist residing in Ipswich, my goals are to extend my visual art practices and to purchase equipment to enable me to work effectively in the arts community.

So my plan is about taking place as an equal in the Ipswich community and making a equal contribution.  Their is nothing in these goals about disability.  The only hint to my support needs is the purchase of equipment.

In my experience the way we engage with our planner and the language used through the planning process very much empowering process. Light years away from the system we have come from where the opening statement read more like this.  as a middle aged woman with cp, epilepsy and depression needing care to be protected from the risk of death in the home, if intervention is not received. 

As you can see language can both empower us and dis-empower us.  While the language of the ndis is very empowering it is those who refer to the ndis using terms of old care model that puts at risk the reform agenda in terms of human rights.  The trouble is those not well verse in the ndis language use terms that may not be relevant in the ndis environment.

In the past I have alluded to the general community being ill prepared for the human rights reform component of the ndis. Many who have little contact with people living with disabilities still very people with disabilities as fringe dwellers. This is not the inclusive participation model that the ndis and our planners embrace. The general public perception is we are grouped as individuals, not a group of individuals. This I think is the distinction the ndis has the potential to make.

Despite the intention of the speaker, the language and the words other chose when referring to people with a disability impact the way we view ourselves and others. 

They way my support workers are address by others in the community demonstrates until now, how  the previous care model of assisting people with disabilities has distorted the truth around the image of disability society has created, For example my workers are often asked if they are 'looking after Deb today?'.

No! is the response, I work for Deb and she directs me to how she needs me to assist her.  Look after Deb?  She looks after herself, better than I look after myself.  Others workers, look to me as a mentor, teaching them how to work with others in the community. 

In terms of he organisation who currently provides my support needs, their workers are refer to personal care attendants. This is very old school term no longer used widely in the disability sector. Those still referring to themselves as carers are unknowingly still reinforcing our dependency on others.  It is now our collective duty to empower people with disabilities by the language we use. 

Changing the way we talk is essential for ensuring the ndis is successful in assisting to install human rights for people with disabilities. Otherwise it runs a risk of becoming just a name change, we are no more equal to others, than we were under the last system.

This is a fear many people living with disabilities have held since the beginning and why advocates like myself endeavour to hold the government accountable for ensuring the foundation principles are maintained. A fear that surface in my own min at  the opening of the NDIS office in Ipswich. Where language being used by some speakers, left a feeling of dread in me. 

Here people with disabilities, there families and carers were referred to as 'less fortunate'. On the very day the ndis was to give us equality. I cringed with fear, ever time word 'less' was used. I wanted to cry, (but it was my turn speak next).  My messaged was my life matters, all I could do was express my disappointment that these words were still being used on a historical occasion.  I long for a day where these words were not used to refer to people with disabilities.  

Families and carers are only heroes and martyrs because that is the role successive governments have imposed on them.  Those with disabilities are inspirational if they have the determination and courage to demand they be treated the same as others.  How sad it is that we remained viewed as less so the disability sector that fails to dispel a charity message. 

The challenge before us is to become inclusive in our language when we are championing the ndis. You may of noticed when I talk about abled-bodied and those with impairment I will use a collective 'we' to identify with a particular group.  

We need to learn . . ."  This said 'I am included',  I too need to be more aware of how my words includes others.  When I think about the social model of disability and being disabled by society not our impairments, labels and language can be so disabling.

My pet hate is people feeling sorry for me . . . poor you!  Once again these people only see what they think is broken.  Something is only broken if the owner decides it is broken.  The owner of this body just goes out and grabs life.  

Often the delivery is the opposite to what was intended my the speaker. A person I highly respected in my life said, with my intelligence I could of done anything.  Even this statement made me feel I was less. I bravely said, but I am doing what I love.  I am passionate about art and advocacy, only a few people every find the true calling and I get to do the two things I thrive on everyday.  For me this is the riches gift I can have when many search in for happiness, 

Language can either embrace  or put up barriers.  If we don't learn to talk the talk the ndis contribution to building the rights of those living with disability is comprised. 

Please join me in talking about disability in an inclusive way. You can begin doing this by sharing my post.

Seeking Refuge

Seeking refuge is no a modern necessary.  All humans have the right to feel safe and be free of the constant fear of harm and yes that should extend to terrorism, in a world living in conflict.  Fleeing conflict occur in ascent times.  Many rules sort to kill those who posed threat to their power and authority.

I reflect on the mother of Mosses who fearing for her baby's sons life hide him in the weeds.  We know this story ended in the Pharaoh's daughter finding Mosses and raising him as her own.  Moses mother had no guarantee the her son would reason safety.  So Moses was an individual - a baby that posed no threat to anyone.

That is not the way the ruler saw it.  He had order all babies under one to be killed.  Try to imagine knowing you infant was to be killed. . . Ask what risks you would take, would you stay or flee?

Make no mistake whatever your choice it was the ruler who was a fault not the mother who chose to put her baby a risk.  Her son faced certain death.

Here we have the definition of a true refugee, someone facing death and thus fighting for survival.  Imagine if you were face with death, what choices would you make?  

Somewhere in the world today is a mother or father faced with these same choice,  perhaps even in Israel as conflict returns.

There was another young child living in that region who life was directly threaten by a King.  Jealous because this child was to be a King like the ruler centuries before hand he ordered all males under one to be killed.  This time Jesus's parents seek to seek refuge in another country.  Did they ask to enter legally?  

We know they had by law travelled to Bethlehem for the census. These were law abiding people who sort safety in hiding in  another country.  How would you respond?  

Whatever, you think of these ancient stories. They set a background to begin to examine out own conscious and convictions..  

Whoever you think Jesus was, there in no denying he was a historical figure whose life was at constant risk.  Christians like me spend this season every year to remember this child and what he brought to the world . . . A promise of everlasting peace.  Isn't peace what you're wishing for . . . A world where your personal safety and you're families safety is not a risk?

This time of year I can't help reflecting on my personal hopes for 2018 while reflecting on the history of those seeking refuge.

The world and Australians, certainly our government seeks asylum seeks as cue jumpers and law breakers, but by definition the are people fleeing probable death. These people first seek refuge in a refugee camp where resources are in shortage and the possibilities of safety and prosperity are shared. Here in a camp they may not know what is legal and illegal, in terms of their journey ahead. 

It is likely the know nothing of Australia's boarder protection law are the want is safety and perhaps the promise land. Let's flick back to Moses and the second time he seeks refuge in a foreign in land . . . This time he did seek permission to leave and it was denied. He heart wanted the blessing of the King  but in the end he was force to break the law and flee.  We do not always have choices to do the right thing when it comes to our safety.

Refugees are a displace people seeking safety.  Whether that be Indonesia, Australia, New Zealand or PNG.  These are unknown places and countries people hear about as flea from perhaps an area that now operates in a constant state of lawlessness.  

I have heard claims that Boarder Protection drops leaflets about our boarder protection laws and detention for those who seek to risk everything to come to Australia. There are legal and illegal was to come to Australia and boat is not the only illegal way to enter Australia.  Many more simply overstay their visa.

Think about all the paper you find in the street?  If you saw leaflets on the ground would you pick it up.  Until now you're never heard of Australia.  Chances are where your fleeing a country your first goal is to reach safety,  Once you're out of immediate danger and your not trying to keep the family alive then you might start to process resettlement and building a new life.

I think every asylum seeker, even Muslims and those who seek to do evil are seeking the promised land. . They want the same as we do the best life for there kids.  Now these people are living in a camp in 'no mans land' where food and water is in short supply when a few names of countries being tossed around and maybe some transport options.  

Ok maybe you're seen clips of Indonesia, The USA, Canada, Australia and even PNG on television, my guess is you've never  seen picture of Christmas Island or Nuara like Jesus' parents and Moses' mum before them your intention is to get your family to safety. You hear a few people say their thinking of seeking refuge in Australian and the first stage of the journey is to get to Indonesia. Maybe others are looking at England or Canada.  The reality is you want safety and the best chance of a good life.

So may be in the camp your told your legal options.  You know you can apply for refugee status.  Trouble is you're left how without all your identification papers and  everything you need to apply legally to live in another country.  Maybe your just waiting for your papers to be processed when you hear others talking about taking a boat from Indonesia to Australian and you as to speak to the person who think is selling you ticket to get to Australian.  Your not in Indonesia yet.  You have not seen the boat and you assume the paper work will occur in Indonesia. 

All you doing is buying a boat ticket that leaves another country to get to where you're going.  It is not illegal to buy a ticket.  So you sign-up with this group to travel to Australia every thing seems ok and you're on the road to safety. Then you arrive in Indonesia with your ticket paid.  You go to the dock ask some questions, maybe you even check out a boat.  

However you have no idea how far you need to travel, or maybe you think to ask how may days at sea.  My bet is you have not idea how many people you'll be travelling with or by getting on the boat your breaking the law. So you get a date to sail. 

You paid this man almost all the money you have it must be legal. Departure day arrives. There are so many people at the docks,  OK these more than one boat right?

Suddenly reality hits everyone is taking the same boat to Australia, this isn't what you paid for.  Well it was but it wasn't what you pictured.  You find yourself and your family in no man's land. All your cash has paid for this trip to Australia.  Not to leave makes you an illegal immigrate in one country or chancing your passage to Australia, believing you'll be protected under the refugee Act if you survive.

You know the truth you know when these people arrive in Australia they are law breakers and the will face indefinite detention. You know our country takes no responsibility for their welfare. In truth these people have no idea of the ticket to hell they purchased in stead of the promised land.

How can we  judge these people and where is the compassion? We as a nation were born in foreign lands.  This is a land we stole - our forefathers common criminals. As we grew as a nation, we grew in wisdom and compassion. Our shore welcome many who risk everything to arrival in Australia.  Those coming by boat to seek asylum is part of the nation we built.

We act like this is the only way to enter Australia illegal.  Thousands arrive on work visa each year, choosing not to return home.  Our governments claims to be just and upright, but more needs to be done to correct the harm done when the British stole this nation and treated the inhabits as criminals.

We a land of milk and honey, whose natural wealth and beauty could support these people and more.  Where has our generous spirit gone?  This Christmas some of these families are spending their 5 th Christmas in detention without a trial or sentencing, despite offers form New Zealand these boat people are detained.  

Many around the world have commend this off shore processing and what is now seen as indefinite imprisonment.  Surely after 5 years refugee status could be confirmed. Rather than shown mercy and compassion the government confirms its commitment to send a strong message to people smugglers. The ones who know they are breaking many laws and only receives fines.  These fines are paid from the profits of ticket sales of those living in detention,

People smugglers unlike those who provide their income get a trail.  Suddenly the land of the fair and free seems to have disappeared and the majority of Australians are happy with the governments board protections laws and its commitment to protect the Australia way of life. 

Like many before me its not very difficult to poke holes in the governments defences and its claims to be protecting our way of life.  I have no difficulty accepting these people have broken law. I do have issue on the fairness of the law,  these people having no trial and the punishment imposed.

This is without consideration of the many international human rights laws our government continues to break while claiming rightness in its handling of boarding protection. The choice between compassion and admiring their mistakes and remaining firm on an unfair law we continue to see their compassionate response.     

Board protection laws when it comes to asylum seeks has nothing to do with the protection of our way of life.  Terrorist enter and  leave our country the same way as us.  By plane the have the know how and the money to evade detection.  Terrorism knows no boundaries and the internet spreads their doctrine of lies and deception to attract others to fight for their cause. 

It is not terrorist I fear, thy parade the message of hate and need for control. It is the hidden  and deceptive emery I fear.   What would it really hurt to #letthemcomehere?

This post was inspired by Shiloh Moore who has shared this Christmas message since 2015.

NDIS - Reflection on the week it was . . .

Community Living

@Ipswich Rocks

Previously people with disabilities and their families have felt excluded from the community.  Feeling like the always lived on the edge of society, but weren't really contributes as participants in the social and economic contributes to the function of  society.  This was partly due to parents and carers of children with disabilities had little choice but to stay at home and carer for these kids.

One of the key reforms under the National Disability Insurance Scheme was to enable parents, carers and siblings to actively participate in the life of their community.  This should be occurring through providing support and respite to family members. When a child is born with disability sadly the whole family become set apart from society.  Access is about far more than being able to physically being able to access the humanities that our community provides.

I've talked before about the concept of the ndis being  scheme for all Australians.  This is due to the desire that our communities will overtime become more inclusive of people with disabilities and their families.  With a goal to see more people like myself engaged in employment and community work.  This is where addressing accessibility comes in.

Not just my own physical accessibility needs.  We can all see the physical access needs and barriers I encounter in my living in community life, as I strive to maintain my high level of independence.  Living independently is one of my ndis goals, and although I don't talk about this goal as much as my art, it pretty much underpins may daily activities and community involvements.

When were looking at social inclusion issues and building an environment where being different and doing things differently is OK or even cool!  In the general community there's a perception that the lives of people with disabilities are nothing like other members of the community.  

Building an accessible community means looking at access issues around education and technology; access to information and support to complete forms and read documents and support the community as a whole is its understanding and acceptance of those with disabilities.

People a totally taken back that someone of my level of disability lives on my own.  Obviously the have no idea how stubborn or determined I am to live a 'normal' live'.  That is the very thing my ndis package is design to do.  Give me a 'norm' lifestyle or a lifestyle of my peers. 

Support the community to appreciate and celebrate 

the talents of artist with disabilities.

This is the reason one of my goals is to build me Ignite Artists Network.  Art has provide me with a connection point to my local community.  Art in general connects people form all walks of life. It is a useful tool in Youth Work and reconnecting youth to employment and it decorates the homes of the rich and famous. Somewhere in between is the art that stimulates conversation. Which is one of my personal goals for 2018.

Many people with disabilities still feel voiceless

this is why I've chosen not give some of 

my dolls faces in my upcoming 

exhibition - 'Into The Melting Pot'.

     

I am hoping my Into the melting pot! Art Exhibition opening 9th February will promote discussion on social inclusion.  Working towards the exhibition and thus my visual art practice is pretty much dominating my thoughts at present  Its been a long journey, now I just want to present it well.

Those preparing their ndis plans should be giving some thought to the nature family and friendship networks. This is something that will be discussed in your ndis planning meeting.  Your ndis funding should support you in the gaps where your natural supports are lacking and enable you to build your social networks to support you better to allow you to participate in the community.  This might be to attend more group activities to make new friends or one on one support to volunteer in the community.

Remember how you connect with others is now your choice.  The ndis is there to support you to do the things you want to do.   Just as my package support me to run my art business.

Part of my network is also the neighbourhood in which I live.  Just as spending time with my friends builds the strength of my friends the same is true of my neighbours.  I live in a unit complex so every not again we tread on each other toes.  Just like fences cause tensions, my garden or its lack of attention has caused tension.  So I employ a landscape team to help me transform my a garden into a path area with raised garden beds I can reach.  Self funding as enable me to engage people with the skills needed to achieve my goal.

For me that is living in a peaceful environment.  Now I am looking forward to planting vegs and herbs to use in the kitchen with fails into my health living goals.  The other part of the goal is physio and exercise and his week I elected to change to physio active. After being dictate to by service provider, I find a mainstream business who is willing to offer flexibility.

I was delighted to find they are happy to be flexible with session times and only charge for the time I can work out on a given day. Oh after fully explaining my poor health.  If I can only give 10 minutes noticed that's ok.  That is better than turn up and obviously being in no shape to benefit from the session. 

So what's with the Christmas Tree made out of rocks?  Ipswich Rocks facebook group has been one way I've connected to the Ipswich and Queensland rock hides and finders.  I decorated the rocks and hide them for others to find.  What began as a marketing activity . . . as developed into an additive hobby.  I would not be able to enjoy this new community activity if I didn't have a support worker to accompany on hiding my rocks. 

The ndis has meant I no long need risking going out on my own.  The was always that . . . what if I have a seizures. I am now accessing 50 hours or more a week support allowing me to be out and about in the community.

Beware that being a member of Ipswich rocks leads to the highly additive process of creating and hiding rocks,  even some of my support workers are addicted.  I hope my post this week can help you think about how you might connect to the community through your ndis package.   

The Lottery Continues

In Queensland support under Disabilities Services was being compared to a lottery.  There seemed not rhythm or rythme to who was receiving funding.  Following my previous post where we sore little attempt by the Queensland government to add too the pool of disability funding for more than a decade, In its final years it seem you were more likely to win Gold Lotto that receive support from the Department of Community Services. 

As the roll out of the National Disability Insurance Scheme commence we were promised a fair system where every person with a disability, regardless of where the lived in Australia and their disabilities, that no one who be disadvantaged.  However, that is not the way some participants are feeling.  Again as I talk to individuals, read blog post and talk to providers, there is a growing sense that plans are like lottery tickets.

 My ndis goals are around keeping my independence;

and building my visual art practise.

Your ndis is based on the things you or your family want to achieve; the activities you want to engage in; how you want to engage in the community, and what supports you need to achieve this.  I have many time discussed, the ndis will fund reasonable and necessary supports for you to achieve your goals.  So it is necessary for you to get into bed at night and out of bed each morning to go to school, shopping, work or a day centre activity, probably at some stage you need to eat and have a shower too.

Under the ndis you don't need to ask for these things.  Just like a obviously, I am going to need a new wheelchair from time to time.  However, you need to take a list of all these things with you to your planning meeting, (the ndia are trying to phase out panning sessions over the phone, generally these have not worked well for participants.)

Reasonable supports are supports that enable you to life a 'normal life' or as I say, to live a life reflecting that of you peers.  So if you a year 12 student, looking to attend uni next year, support to get round campus, assistance in the library, a wheelchair and physio therapy are pretty reasonable requested.  However, a laptop is not, as most students have laptops these days.   

So the ndia will only fund supports that are directly related to your particular disability and the goals you tell the ndia about.  If you're goal is not to play sport than their not going to fund a sports wheelchair. 

Under keeping my independence and working as an artists I asked for a new wheelchair that was more compact and more suitable for teaching and attending workshops. 

Key One - Well defined goals

Is to know what your goals are; how you want to achieve your goals (activities) and what supports you will need. When you meet your planner they will know nothing about you, your natural support systems or what your life looks like day-to-day.  You could be living with your parents; a sole parent; married or just starting school.  

All of these factors are good to factor in how much support you need and what type of support you need.  So if you don't tell your planner you husband needs help to put you to bed then they don't know that.  Also most people we talk to understand things like when I am at school I need help to eat lunch and go to the bathroom.  Or I need community support because I have uncontrollable seizures. 

However few people know what my job as an arts worker involves. Basically my job involves supporting other arts to learn skills, produce and sell their art work.  So if I said I need assistance to get to and from work everyday.  (Work would be the activity I am undertaking)  And I didn't explain the most days that will be in Ipswich, but some days that is boarding a plane in Brisbane and arranging for a support worker from an agency top meet me at Hobart airport. 

So what does ndis pay for:

• Only the support hours the support workers are with me.
• Not my airfare and accommodation
• Not the airfare for a companion or worker.
• Not travel expense e.g. taxi to the airport. These are business expenses.

Some people feel disappointed when the ask for things that are not reasonable like airfare for a companion. 

If I said to my planner I wanted to  have a few are classes and sell my art.  The planner will not know I am a art teacher and the Queensland Support Studio Network Representative.  She will not know that I need to visit other art studios and need assistance while I doing studio visits.

So when your explaining your goals and activities be as specific as you can.  Don't say get to work,  Say to get out of bed, have breakfast showered and to get on the right train to travel to Brisbane and the need to tell the guard, I am getting off at Roma Street and my pa will meet me and we will walk to work together at my legal firm which I own. Your planner will know at what level your visual impairment is.

Key Two - Preparation 

So how are you going to introduce yourself to your planner?  In an hour or hour an a half you need to tell them 

• Who you are:  Are you single or married, living at home, in supported accommodation or independently.  What you do? Your daily life; current support networks, current supports. 
• Your goals - Dreams and aspirations, goals, daily activities and how you want to do those activities.
• Tell them about all the equipment, medical aids and assist technology or animals you need
• Tell them how you can maximised your Independence or improve your quality of life (e.g. behaviour management, speech therapy, modification to your home.)  
• How you want to manage your funding and what assistance you will need. 

When I talk to others they express the frustrations that the know are number of artists all working in the same art studio and yet funded for the goal to sell artwork very differently.

So my questions would be:-

• Were you specific about their art goals?
• Did you say they were professional artists?
• Did you make clear this was work not a hobby?
• Did you explain what a supported studio was and how the artists is support by the studio?
• Did you state or describe outcomes?
• Did you state work hours in the studio? 
• Did you take photos of their artwork?

The plan develop for you is based on your planners understanding of  who you are and what your needs are. What the activities you want to undertake involved and the types of supports you will need to do those activities.  Unless you give your planner this understanding they won't know your needs.

Your planner will ask you a series of questions to help them understand you support networks, you abilities and types of help you need.  If you say you want to play AFL football will they understand what you mean?


Endeavour Foundation found the more prepared a participant was for their planning meeting, the more likely they were to be happy with their plan. If you think you understood the planning process and understood the lingo (ndis terms) and what you were asking was reasonable and necessary (it related directly to your disability and your goals).  Then you do have the right to appeal and ask for a review by another planner,

If you going in and your really unsure on 

1.  What you want to do?  You can't say want to keep doing .
2. You need to explain what that is and express that as a goal.
3. If you attend a service providers activities you goal could be to give mum and dad a break, make new friends and have fun. You want to do this in a group.

Key three - Advocate for yourself

Speak up!  Ask questions! Ask you things to be explained in a different way if needed.  When you attend your planning meeting or have it on the phone, have someone you trust and who knows you well be with you. They will be able to prompt you and remind you to look at any notes you have with you.  You can even ask someone to advocate on your behalf.

Your ndis plan is about YOU! The participant(s) is the person with the disability.  The ndis will empower you to make choices for yourself and your family.  All Australians make lifestyle choices; what school to send you kids to? What you want to be when you grow up?  Where to live? What sport or hobbies.  Sometimes choices are restricted by your disability or a family members disability and that is no longer OK?\

It is important that you understand the planning meeting is NOT for

• Explaining your disabilities and what you can't do!
• Your support providers!
• What support workers! 

The questionnaires will determine what you can't do. Daily activities are general - play sport, work and meet friend.  Supports are one-on-one; group, respite, centre based, equipment and improvement in daily living.

By advocating for yourself or someone else you are letting the planner know this is what is important to me. 

THIS IS WHAT I WANT!

So if your not happy or don't understand its ok to say something. This is why the ndis was introduced so you can have you say.  You don't need to worry about what other people think. You don't need to please a provider or worker.  You will not get in to trouble for just saying what your not happy with and that can we try something else.  That is what making choices is all about. 

So if you think about the things we've been talking about:

• Speaking up for yourself
• You were well prepared
• Being clear about your goals and activities.
• Spelling out you needs
• Your supports request were reasonable and necessary

And you were not happy with your plan.  Then advocate for yourself instead of feeling like your lotto numbers didn't come up again.