Look at me! Look at me!

Flexing Muscle's

 

Remembers the story of the Three Little Pigs. I'll huff and I'll puff and I'll blow you're house in.

 

Each of the three little pigs built a house to escape the big bad wolf. However, the first two little pigs didn't give thought to the abilities of the big bad wolf and were in the end under protected. The wolf on the other hand, overestimated his abilities when he came to the house of bricks.

 

The current 'flexing of muscle's' on the world stage reminds me of the three little pigs, with world leaders flexing their muscles before the world.  Look at me . . . Look at me . . .  Demanding the worlds attention.

 

The question is do the have the 'power' to carry out their threats? How much of the 'war of words', can be backed up with the war toys, these giants are parading? Is pretty scary for those in the target range and history tells us how easily wars can escalates.

 

The huff and the puff may be just banter; smoke and whistles, to divert the world's attention, but tough talk is lethal when the toys are this powerful and we have been taught to miss trust.

 

The trouble is no one really knows what fire power North Korea has.  We seen a few missiles going astray, fortunately missing there targets. With only talk about their intended target - the USA, so far there shown nothing that really hurt the US.  However it is certainly a snuff at the Union and a statement  I do what I want!

 

 

The media headlines    the world of edge!  Only serve to spread fear, in a world that lives with terrorism on a Global scare and groups like Irsis;  hold the world at random. The ever presence concern of when and where will the next attack be?  Holds us hostage to fear. 

 

In a world that is dotted with conflict and hidden emeries, is the muscle flexing by North Korea, the US and now Japan, a drivesation to the international threat of terrorism or the next step in spiralling the world towards the trip of Would War III?  

 

We fight emeries on many level.  Some are some screens and huff and puff than potentially can turn a war of words to great destruction effecting billions of victims around the world.  While other terror cells wait in silence, lurking, poised for the next attack.  These are not our Muslim neighbours visually living there lives like other Aussie families. Not all terrorist dress there women in black and pray to Allah.  

Just like the Cue Klux Clan, they have distorted religious teaching to exert there dominance over others.  The fear this creates gives them the power the are seeking.  Banning peaceful world citizens and demanding they dress like us is no protection against the secretive ways the continue to invade our lives. 

To fight our emeries we need to know who they are; who they work and what their adjectives are. To be caught by those saying Look at me! Look at me! diverts us from building a defence that brings victory. 

 

There is one more emery - unseen at play.  The forces of darkness, which are lurking as the events of history are played out. As a Christian I believe that we are marching towards end times and the prophesies of World War III.  

 

The world originally creature by God, is now under the destruction of mankind and those who flex muscle's and want us to fear.

 

"No man knows the day nor the hour."

 

Despite claims that war are caused by religion, this is not what I believe as a Christian.  Wars are due to man or nations seeking to have demonian over others. 

 

Such a display of power was played out in the garden of Eden, with Satin's attempt to assert his power over man and God.  He won with man and the fall occurred.  However, ever since he has been on a leash.

 

We have been for warned of the terror and suffering ahead.

Fear not for I am with you, even to the end of the age.  

 

 

As mankind continues to flex muscles and plummet the earth, destroying all that is good in the earth and ultimately himself, the evil one sees his chance to exert dominance over all the earth and the bible tells us at the end of time we will all be judged. 

 

If we fear the judgement of God then who else should we fear?  It is sad and frightening to see man turn on the earth and himself. Seeking to destroy what God created.  We can go on blaming others for all that is wrong and unjust on earth or we can be beacons of light and hope, as darkness descends.

 

The emery (terrorist and demons) now walk among us.  Evil can not drive out evil.  Looking at banning other religions in not helpful.  Rather there is an a window of grace and opportunity to spread love and extend a hand to those of opposing faith.  I fear not evil, however I not looking forward to further decay on this earth.

 

We all have a choice . . . to flex muscle or bring hope in the darkness.  The best defence is to discover your real emery, not those who are seen.     

      

Lost in Transition (NDIS Story)

 

 

One of my biggest hopes for the NDIS was creating a weekly schedules to enable me to become an established artists and grow my wings to exhibit outside Ipswich.  This has happened through my membership with Aspire gallery. An achievement I am extremely proud of.

 

 

 

"No rules!" opens at Aspire Gallery next Wednesday, for one week only.  This is the third group art exhibition I have taken part in.

 

Prior to becoming a NDIS participant my life was a constantly juggling art, of planning my pathway through my day to achieve my art dreams and some how I made it happen.  On of the biggest change is my life has been the establishment of  a weekly schedule that I write and now only negotiate with one service provider to make the things that are most important in my like happen.

 

 

 



It is definitely easier to scoot around town with one support team behind me all the way and a roster team to guide me.  I have some great new workers who have come on board and are assisting me to achieve my goals.

 

My travels have been limited by a period of unstable health but as my energy increases my wheels want to escape more. I now have the support to get out and about to participate in the Ipswich arts community and I am looking for to FUSED Art Festival next weekend.  With most events within walking distance I looking forward to rocking in Ipswich with my friends.

 

 

However venues and events further from home are a struggle to navigate. Even a trip to the doctor.  Together with my service provider I am working on a support team who can support me in my community roles and building my art practise and developing a transport plan that is affordable.

 

As my seizures decrease I am more confident this can happen.  Just not traveling in workers cars wasn't on my list of expected changes under the NDIS. My readers all know my love affair with Maxi taxi's and the waiting game.

 

Will the shift allow me to do what I want in the time. . . Will my trains connect at Roma Street.  What if I have a seizure in Brisbane vs the cost of a Taxi?

 

 

 

What a struggle it is to explain the additional cost of transport, when public transport isn't and option due to fatigue and additional travel times.  The NDIS are still saying my transport costs are not high and my illness does not restrict my travel.  So I still lost in translation, waiting for taxis and hoping I got enough time to get from A to B.

 

Apart from that being a NDIS participant is great.  Hope to share where my art will be popping up next soon.

What on earth is all the fuss about?

Let's stick to the facts

 

Why a plebiscite which causing so much hate and division? What exactly are we being asked? And what changes to the law and behaviours will result?

 

From my position I have already expressed my disappointment in the case posed by groups like the Christian lobby, groups that I would expect to side with.  There arguments in my view:  

 

• Is not talking about the definition of marriage, nor the legal or moral issues the definition results in.  For me this is the only debate we should be entering into.
• For same sex couples this is seen as a human rights issue in the same way the 1978 reformdrium lead to the 'first people becoming Australian citizens. Equality of marriage is for some about the same rights as other marriage couples.  Not the ceremony itself. Thus involve 1. a change in the definition of marriage and 2. a change in federal law. 
• These two issues have nothing to do with moral behaviour, the moral decline of society, speed of disease, effects on children of same-sex couples.  Comments to this effect are offensive; spread fears, and homophic hate. No wonder a NO vote offends so many same-sex couples who feel this is a human rights issue.  The current debate is not focused on the true issue.

 

Are all couples equal under the law? The answer through a two minute google search is NO! So to give equal rights to all couples in Australia requires a change in the marriage law.  This is a very different issue to changing the definition of marriage.  We should not be even discussing if the act of marriage is right or wrong.  But how we ensure the same rights of all couples in Australia

 

Just as the 'no' vote offends many same-sex couples, the fact that they are public saying, a 'no' vote is offensive deny's my right to say how I feel on the issues.  They are telling me its not OK to say 'No' on the grounds of my religion.  Blaming 'religion' for preventing basic human rights is equally offensive to me.

 

Just like our 'no' vote should be base solely on a change in the Marriage Act, so should the 'Yes' vote. The moral debates are base on religious and personal beliefs and while they should be respected by the opposing side, fail to address the issue of equal rights and how we change the Marriage Act to achieve that.

 

As a Christian I feel we are changing the wrong law.  The both the biblical and historical definition of marriage is:  the union of a man and a women, in the presence of God and before wittiness. 

 

This definition was pre any legal rights were attached to the 'union of marriage'.  So to me it is wrong to change the definition of marriage.  It is the civic union laws that need addressing. In terms of the law and human rights in my view all couples should have the same rights.  Married, defacto or same-sex civic union.  Voting 'no' to same-se marriage is not saying as couple you are NOT equal to me. Saying "NO" could just mean I don't believe that we should change the definition legal of marriage. And that should be OK!

 

As a Christian I believe all people are equal in the sight of God, and all of us have sinned and fall short of the glory of God.  Been saved from my sin doesn't make me a better person or a gay person less equal.  I do not believe my beliefs alone should offend others but people will always be offended anyway.

 

Back to the debate of Australian law and the Marriage Act.  What does the law say?  And what are the difference in rights in terms of Australian law, which in no longer based on the Bible. Interestingly  the 1961 Marriage Act did not spell out the two people, had to between a man and a women, this amendment occurred in 2004.  This changes the view we are changing the definition of marriage.   We did just that in 2004 without a survey, so why ask to change it back?

 

One difficult is the laws on marriage and civic-union vary from state to state.  Civic union relationships are not recognised in every state, so we start to see where inequality appears. Changes to the marriage act would mean the rights of all couples would be applying federally. And for the gay and lesbian community this is at the core of the debate.  The same legal rights for all couples. 

 

All unions have the same legal rights in terms of family law and property rights. Commonly an argument of rights for same-sex couple emerges from a decision needed from a 'Next of Kin'. Prior to civic union same sex couples were not seen as legal, a civic union realised this as a legal relationship, the relationships and thus law when tested do not apply in all states and terrorises.

 

These couples who face discrimination everyday want; what we all want.  They want the peace of mind that in medical emergency or the event of death the person who means the most to them has a voice. Instead of the risk decisions maybe tested in the court of law, due to the prejudges of their legal 'next of kin'.    A 'NO' vote doesn't provide that protection.

 

So if the Marriage Act was amended in 2004 to include between a man and a women, where as previously was between two people. The surely injustice has occurred because of conservatives.  So the question remains why is the government wasting money?  Until equality in marriage is granted the debate will continue.  When we are amending the law back to the wording in the 1961 Act one has to ask what on earth the fuss all about?

 

 

T

 

 

 

 

  

On the subject of Human Rights

 

As a disability advocate "I had not idea how little the majority of my friends and colleagues understood about my life and my lack of human rights." I smile at the lame attempts some made in response to my last post. Clearly, my colleagues are under the illusion of what my life behind close doors looks like and a strain it takes on my wallet.

 

At the core of the NDIS are two very basic human rights:

 

1. Choice; and
2. Community participation

 

As my colleagues fight for equal rights for marriage equality, the are blissfully unaware of how my human rights are deny by the structure of society. 

 

"Find someone to come to you." So an ablebody person thinks I should opt for second best?  1. That denies choice and 2. Doesn't meet the community participation goal for the NDIS.  Really it sounds like a feasible option its just not the option I want.  Why is it so hard to explain the meaning of ordinary life and the right to chose where I see a health professional.

 

My rights to choice extends far beyond my medical needs and looks a my right to a meaningful life. For me that life is centred around creativity and making a contribution to my local arts community.  The human rights I am fight for . . . community participation at a price I can afford.  "I could get the power cut off," I joked to someone. 

 

 The location of my home fortunately means I am not imprisoned completely by my inability to use public transport.  Becoming a NDIS participant meant for the first time I don't need to take the risk to go out on my own. However as everyone pays for transport it is not cover by NDIS.  If my support workers agree to drive their car and most have said 'no'! they that will cost 78 cents per km.

 

Does that sound like equality to you?

 

 

 

Myth # 1: Half-price taxis are as affordable as the public transport system. Basically my transport budget is $10 per day.  Which gets me in and back to Brisbane City on a Train.  OK if I am happy to stay is the CBD?  However, my $10 doesn't get me to the airport. $9 gets me a one-way trip to my gp.  I dip into Tuesday's budget to go home.

 

I have funding for improved lifestyle and have chosen hydrotherapy. Travel to the pool at half prices is $20 one-way.  Taxis limit me to one stop, where I might chose to go to Spotlight, then to my hairdresser and finally the supper market.  Each stop by taxi incurs, flag fees, the cost goes up. 

 

Myth # 2 Now I just been taking about meeting my basic needs here.  Like $112 to go to my specialist appointment at the PA hospital. Oh but, you have you transport funding.  Too true, that leaves me with $20 for the other 13 days in a fortnight. Assuming I skip my hydrotherapy sessions that week. 

 

Myth # 3 the transport funding provides incentive to work or volunteer.  Nope!  I spent that on just meeting my basic needs.  Luck for me I can shop online. Chuckle postage is now actually cheaper.

 

Myth # 4  I don't want to work. That's why I am artist, own a small arts business and advocate for Support Studios at National level. Umm! How much was that taxi fare from the airport?

 

 

 

To top it all off, we are still fighting to keep our taxi subsidy. The Queensland Government has given a two year rupee.  I is still consider to expensive a luxury for the state to afford.  The Every Australian Counts campaign that was for runner to introduce the NDIS was fought on enforcing the human right of all Australians and especially those (and their families) disadvantage by disability.

 

You can help by letting you local MP know that keeping the taxi subsidy scheme ensures some level of rights for those who can't use public transport due to their disability. Please share my post to let other know about this looming failure of the NDIS.  

 

 

Well . . . better go make some art so I can go to the pool next week and keep fit.

 

What does a normal life look like?

 

When I meet with my NDIS planner she asked what supports I needed to live a normal life? The National Disability Insurance Scheme supports people with disabilities to participate in the community.  Readers of my blog know that my participation is around art and advocacy?

 

So what does an artists life look like besides a organised mess and half finished are works every where?

 

 

Currently I am working on a doll exhibition to examine the issues of diversity and inclusion.  I also have work on exhibit at Aspire Gallery.

 

 

Today its all a bit frustrating . .

Normal . . . $56 one way to the PA hospital?

Normal . . . Unable to fill support shift?

Normal . . . step where my appointment is?

Normal . . . need to cancel appointment as their is no support worker and power chair can't get  in.

Normal . . . I pay $75 because I can't access a building.

Trying to explain that cost of transport is not affordable.  $112 to attend a medical appointment is unfair.  I need to give 24 hours notice to cancel my support.  A worker can call in sick and I miss an appointment.

I know life will never be fair!  But these are the hurdles I face as I navigate the NDIS.

In terms of assisting with transport costs for those who are unable to catch public transport the NDIA have not got close to the actual costs of transport.

What is normal anyway? 

NDIS Particpation Reaches 100,000

Rolling on with the NDIS . . .

 

 

 

This week saw the 100,000 participants being funded by the National Disability Insurance Scheme. Which is being rolled out across Australia over the next 3 years.  It is estimated that once established the scheme will support 460,000 Australians and their families to participate in their communities and live there best life.

 

Community Participation

 

But what does it mean?  It means, for the participants (person with disability) and their family members, will have the support to  participate in the social and economic growth of the community.  For a parent of an adult child with a disability, this could mean they can return to full-time employment or study. For a student with a disability leaving school, it means greater choice and more pathways to move to community life. These students now have more pathways and choice of service providers to access, including,  access higher education and having the support they need on campus. 

 

It's about giving the school leaver the best opportunities to establish skills that enable them to be as independent in the community as their disability allows.  The NDIS is a life long approach to maximise and persons level of independence in the community. 

 

 

 

 

 

Thus achieving the key reform for the NDIS is increased social/economic participation.  The Scheme itself will employ people and it is envision over time the scheme an benefit the wider community.  Therefore it is a scheme for all Australians.

 

Participation & Work Life

 

 

Currently my work can be screen 

at Aspire Gallery

Until 2nd September

 

"Cats Exercise Class"

Screen Prints

 

As my followers know I am a self-employed artist and freelance arts worker. I have just begun working with my first art gallery outside Ipswich. Something that would not be possible without support to attend art classes, purchase art supplies, getting work to the framer and finally a gallery.

 

Each of these steps are involved in putting my artwork on the gallery wall, involves me making purchases of goods and services. This is the type of economic contribution participants of the NDIS and families are able to make.  The NDIS is not about just providing 'care & support' anymore, its about 'how' we as individuals and families chose to participate in life.

 

It's about Choice!

 

 

 

Support provided to individuals and their families, is determined by their life time goals and the immediate NDIS goals in their NDIS plan. Their plan allows them to choose how they want to achieve their individuals goals. 

 

My NDIS goals are around maintaining health and independence; and building my business. I  have made the choice to be self employed. This may not be the image that comes to mind when you think of  participant of the NDIS and certainly its not a choice many participants will make.

 

Traditionally people with disabilities have had little control or choices in life.  The traditional model of support service meet once your support system was assigned to you, that could determine the support you received for the rest of your life. 

 

In Queensland that could mean you were restricted to the geographic area where you were being supported, if a family member was transferred, the 'client' would need to reapply for their support or the family member needed to find another job.  For some the lack of choice could be very limited and restricting.

 

Become a NDIS participant for one of my colleagues, frees them to more out of the Ipswich region and create a new life for themselves. Sounds like a pretty basic choice - but basic choices can be life changing. 

 

The look of your package does not have to limit the choices and changes you can make.  Simply the freedom to move your supports at anytime without panelity, can be life changing and enriching.

 

Sure there's the number crunching side of things,  but these numbers don't need to determine your future.

 

Struggling with Change

 

 

 I have found this harder than I imagined. I knew I wanted to keep my creative lifestyle and grow as an artists and an arts worker. Which involved continuing to travel for work.  In the distance is the National Support Studio Office in Sydney.  This is me on my day off, sight seeing.  Living a life equal to my peers, with the headache of setting up to self-manage my own supports.

 

How narrow minded was I?  All I was concerned about was simplifying my support system and thus the number of workers in my life. Now I did not need to choose to self-manage to achieve that!

 

The choices were have the NDIA manage my supports under one provider; choose a host and service providers; or self-manager.  Self-management could open-up new opportunities in the future, including engaging and employing my own workers but right now trying to figure out how a bunch of numbers looks like in real life and punch them into a portal budget, makes me wish I was Doctor Who and could be transported into the not to distant future where the NDIS is enabling me to live as an established artists and maybe roaming the world.  (I am dreaming or need to sell a bucket load of art work between now and then).  No the NDIS doesn't pay my airfare. That I need to earn.

 

Along the way there's a few discoveries that have surprised me. These have challenged my thinking and help me growth.  I thought I respect my staff, but there's been a few points of view that have caused me to broaden my mind. If I am ever going to engage my own staff there's a lot of self discoveries to come. 

 

I never imagine the transition to the NDIS be prefect, I am sure their be more challenges along the way.  I still to map out how navigate the transport system and its costs to allow me to zig-zag across town during my working day, but at least this week my artwork made it to the art gallery safely.

 

 

Tree of life at Sunset

 

 

 

 

 

Confession

I don't understand the pedsite and my paper will be unmarked. As a Christian I have friends who are openly gay.  Truthfully we would love to be able to celebrate their union. As a Christian I am taught not to judge, I believe that is God's role not mind.  We all make choices and we all sin and I too am a sinner.

 

Gay couples are just like other couples who choose not to marry.  I do not love my siblings and less or hate their partners. This is their choice.  God has given each of us a free will.  Your decision is between you and God?  So part of me thinks if others chose not to marry? Why deny gay couples the right to marry even if I may not agree, this decision does not affect me and my relationship with God any more than the choices my siblings have made. 

 

Just for the record, if the law is changed and my friends choose to get married if invited I would love to be there.  My attendance does not mean I approved,  it means they important in my life and I respect their choice.

 

The real struggle and thus the real debate - and only debate is do we change the definition of marriage?  The origins of the word are biblical.  A union between a man or women witness before God. So I don't understand why non-Christians chose to marry.  It is not a legal requirement to live together.  

 

I also do not understand why defactors in same sex partnerships do not have the same rights as other couples.  Added to this I do not understand the difference between a marriage and a civic union, I don't know and please excuse my ignorance but what is the legal difference. To me the only difference is one is before God and the other isn't.  So most marriages are in name only and thus the fight is over the a piece of paper.  What a total waste of money to only spread fears, hurtful comments (on both sides), hate, and the permission to convert others to our way of thought.

 

If someone was to deny me my faith and beliefs, I would be deep offended.  Just as I am offended by people blaming my faith as a defence. Religion is many different things to different things so be honest your problem is not with religion it is with the Christian faith and the definition of marriage.  Our faith does not make us gay bashes or proof haters.  God lovers everyone including men who have relationships with men; and women who have relationships with women.  However, he hates the choices they make, just as he hates adulteress (now legal - just saying).

 

All sin is equal in the sight of God.  However, I have more of a struggle with those claiming to be Christians and openly having gay relationships.  It come down to how you define marriage and how that works with the Australian law.  It should not be about wrong or right.  We have the freedom to do the wrong thing. Like live in sin'.

 

I wish all hate, fear and judgements where band from the campagain.    I find the arguments of the Christian lobby weak. How this effects society is nonsense these behaviours occur anyway. However what non-Christians may not know in some Christians denominations marriage is a scarcement, it is on the same par as baptism and holy communion. So your messy not only with the faith but the core of their union with God.

 

It is not a piece of paper or a law to rewrite it is a ceremony the God attends. That fact this change in the law takes God out the picture of marriage and reduces it to a common everyday 'right' is where I stubbles in changing the law the whole bible is a lie.  This is why some Christians are offend me, my country is taking some precious and deeply inmate with God and making it common. 

 

Like I said I do not understand why non-Christians marry, where a man and a women or a same sex couple.  Neither of these I understand. Neither of these do I commend. Nor do I commend non-Christians who chose not to marry.  I do however struggle with confessing Christians who live together.  These are the people who claim on thing and do another. 

 

So unless my gay friends help me understand the difference between civil union and changing the definition of marriage. I mush decide whether to tick no box or both boxes. Cause I am torn and don't want to give my vote to either side.

 

Jesus said, he who is without sin, may cast the first stone, so my stone stays on the ground.  On the day of judgement we will all be judges foe our actions.  So it is only my actions I need to account for.  I need to explain to God why I did not tick NO. Just as you are only accountable for your actions.

 

Remember I not ticking YES either. So the government might as well send me the fine.  It will help pay for the money they are wasting! 

My ndis dreams seem far, far away!

 

Times are changing . . .

but attitudes take longer . . .  

 

 

The National Disability Insurance Scheme known as the ndis is not a disability support funding scheme.  The ndis funds much more than the care and support people with disabilities and the family need to live day by day.

 

It is a scheme to enable people with disabilities to live a life of there choosing.

 

People can now chose their own goals and how to achieve them . . .

 

I want to go to university . . .

 

I want to swim for Australia . . .

 

I want to move out of home . . .

 

I want to learn how to use public transport . . .

 

I want to sell artwork  . . .

 

 

However the ndis gives participants and their families a whole range of choices around:

• What they want their lives to look like.
• Their daily activities.
• Ways to improve their lives.
• Who supports them and how they want to be supported.
• What times they want to be supported.
• The support services they want to access and how often.
• Therapies, technology and equipment to maximised their independence. 
• How and by who their funding is managed.

My life's goals and thus ndis goals centre around art:

• Building my art practise
• Belonging to the art community
• Working as a national arts leader

The ndis is essentially about building participants social and economic independence.  This involves things like:-

1. Independent living
2. Learning knew skills
3. Employment, community work and volunteering
4. Sports
5. Leisure activities
6. Hobbies

These are choices we all make a we grow and develop as human beings.  This ndis is not to support people living inactive lives, sitting a home or nursing homes.  It is to support people to be as active in the community as their disability allows.

 

This is something the entire community is responsible for.  It about the community being ndis ready and people with disabilities and their families having access to the parts of the community that is most important to them.  That might be the movies or the pub or even the local greyhound track.

 

"To create change the community needs to be ready to embrace change!"

 

Are you ready?

 

Is you business ready?

 

What if someone with a disability wanted to join your cricket team. Is their public transport to get them to practise and games?

 

If you broke your foot and you couldn't drive for a few months. How would you get to work? the doctor? physio appointments? do the shopping?

 

People like to think the lives of people with disabilities are different to the general population.  This is no so. People with disabilities go to school, play sport, have friends, go to the movies, enjoy arts & crafts, have relationships, buy houses, drive cars, get marry, have jobs and even have kids. Just because you don't have a disability now doesn't mean you won't have a disability in the future.

 

If you acquired a disability, how much do you think you life would change?  Have we built the type of community you would want to live in if you became disable?
 

 

  

Not only are my choices around art, but living independently and working as a national arts worker, I love traveling and exploring new places.

 

In developing what I wanted my life to look like under the ndis and setting my ndis goals, I gave much thought into what I wanted my support system to look like.  That takes me one work to describe . . .

 

Flexibility

 

• flexibility with the types of supports
• flexibility with support times and days
• flexibility from week to week
• flexibility to travel
• flexibility to use agency staff interstate
• Most of all flexibility around my art practise. So juggling appointments and art deliveries was easier.

 

To do this I choose to self-manage though a plan manager and select the service providers that I wanted to access.  Mission accomplished. I was able to set up my own weekly schedule the way I wanted, for the first time since I began needing support 18 years ago and I love having only one roster.  This is the thing that is really working well for me.

 

 

What's not working for me at present is community living and being part of my community and thus community participation.  To be fair this is lately due to my poor health. Not only can I not go out on my own, but I have very limited energy. 

 

Now I not able to travel in my supports workers cars (due to the provider I have chosen) it takes so much more energy to travel on public transport. Needing longer times to travel and I have on managed a handful of appointments in the first 6 weeks. For two of these appointments, my current support team could not meet my needs so, to ask my parents to take me and I had to ask my gp to do a house call. 

 

The ndis has not been what I hoped.  I am restricted because my support workers don't want to drive their cars or park in shopping centres where the might get damaged.  Why can't I buy a car for them to drive?  On a pension and the odd art sale . . . No!  The fact I would have to pay higher car insurance to have multiple drivers escapes them.  They don't want to increase the risk of accidents and higher insurance, but I had too that is ok.

 

Will my support and how I am support ever really be about me and my needs?  My ndis dreams feel far, far, away!

 

 

 

Moving through the NDIS Mase

 

Enchanted Forest

 

Watercolour by Deb Chilton

 

Aspire Gallery -  MAGE

 

16 August - 2 September

 

 

 

Finding my way in the NDIS Maze

Making changes to my supports under the NDIS has been an interesting experience.  I remember month's a go writing about is the grass really greener on the other side?  In my case is too early to even ask that question. But yes its a bumpy road to begin with. I am still navigating the maze in regards to transport.

 

One thing I've been clear on all along is I wanted a more flexible support service to reflect the constantly change workload demanded of a artists, we never know what opportunities are going to appear in the forest.

 

 

 

As an emerging artists I am always looking for new opportunities to exhibit my work and extend my networks. Recently I became a member of Aspire Gallery in Brisbane and this is the second group exhibition I have work accepted for. To some extent it is the galleries and curators who determined my schedule.  Is work is due by 2pm, their not going to wait around to 4 pm for my support worker to start their shift.

 

As an individual and an artists, I have never imposed limits on myself. Although at present my health is unstable so I am not whizzing around town by myself.  Not that my wheelchair is equipped to transport artwork.

 

So the most important thing for me was flexibility in service delivery days and times.  So like I share in my last post this determine my choice of provider.  Since I am self-managing, I could of employed my support workers directly.  Something I am interested in doing in the future. However I felt right now there were enough challenges and changes to juggle without recruiting staff. 

 

Also using a provider givens me the reassurance there are policy and procedures in place to protect me and my support workers.  One of the things I want to do before going do the path of engaging my own staff is to think through these potential risks and write some guideline to protect myself and my potential support workers.

 

 

Cats Exercise Class

Screen Prints by Deb Chilton

 

Currently on exhibit at Aspire Gallery.

 

 

My next art goal is to have a solo art exhibition outside Ipswich. Which will be more of a challenge logistically.  At present delivering a small number of pieces to a gallery is difficult. 

 

As an business owner running workshops for artists with disabilities per-NDIS, access to affordable wheelchair friendly transport was the single most deterrent to an artists with disability workshop attendance.  Here in Queensland this has been on of the first bumps in the road for participants under the NDIS.

 

Firstly, transport costs for people with disabilities was absorbed into the NDIS. Things like the mobility allowance which assists with the absorption of the costs were linked to the level of participation has in their local community.  The higher the level of participation the higher the amount of assistance.

 

It was thought an increase in this allowance would cover the costs participants who accessed the Taxi Subsidy Scheme.  Obviously  major decision makes don't rely on taxis.  In Ipswich many participants access transport from a transport provider such as CODI and Able Australia.  In the past the use of these services has eased finical drain on personal budgets. 

 

The introduction of the NDIS meant the funding for under 65's was pulled limiting the access people with disabilities had to these and other services like them. 

 

 

Introducing Pick-Up Australia

A new transport service supporting

people with disabilities in Ipswich.

  

However the operators soon discovered the couldn't deliver their services at competitive rates due to the business model.  This saw organisations such as Queensland Disability, Community Disability Awareness and Able Australian along with individuals lobby for the reintroduction of the Taxi Subsidy Scheme in Queensland.

 

However even in the changing landscape transport costs are still a major deterrent for community participation and incentive to gain employment. The flexible support service I choose does not provide transport to participants. Find my mobility on my own very limited out side home very limited due to illness has meant my ability to access even the local community.

 

I have opted for 2 hydrotherapy session a week.  This one activity cost more that my transport assistance allowance if I use a taxi. My case highlights a floor in the calculation of transport needs through the NDIS.  I am still hopefully trains will again be an option in the near future and my chosen provider is looking into introducing transport services.

 

Hopefully by the time I am well enough to return to work. This will be possible because otherwise it boils down to using a curiour service to transport my work, which in itself may produce limits on getting my art exhibited outside Ipswich.

 

However these are early days and I have not given up on my hopes of the freedom the NDIS will bring me and other participants.

 

 

 

 

Buyer Beware!

 

 

Living in a environment not designed for my own daily challenges isn't always easy, but it's a choice I am glad I have made.  My work as an artists and arts worker takes me all over-our great country. At country to always accommodating.

 

Now if you know me - you know I am a tough nut! Yep I admit I a bit 'nutty'.  I am the perfect example of a rule breaker and refuse to stay inside my box.

 

Instead finding ways to extend or escape the box.  This was one intended reason for my recent try to Sydney.  But someone told the box it wasn't allow to follow me.

 

 

I wasn't surprised to arrive at accommodation that wasn't accessible. What is often labelled accessible is not.  Accessible accommodation beings with a building plan.  Just like parking a car I need turning space.  Well lucky for me I packed my lightweight can and I can stand up and walk in to the bathroom, cause it was the only way in.

 

Often I will let management know the room doesn't meet my access needs, occasionally the place me in a larger room.  Most have one accessible feature, but never before have I encounter steps at the entrance to accommodation claiming to be accessible.  There were no steps on the webpage photos.

 

Although it said accessible on the website I emailed to check.  Silly me - made the same mistake quizzing them about the bathroom.

 

 

Not dreaming that this would be the welcome I would received.  I was taken back the manager of the Outback Lodge, was defensive and blamed me for not telling her of my access needs. As I had paid cash they had a no refund policy.

 

As always I tired to be positive and assured myself I could make it work.  As you can see it was not possible to get round the my room in my wheelchair, but that's nothing new to me and moving things around would help.

But still there was no motivation to unpack. . . I was over whelming disappointed.  How could I tell my friend I didn't want to stay. So I went in search of fish n chips!

Returning back to the unit exhausted I manage the step but my legs wouldn't last much longer, when a stranger offered to help "I blurted out I don't want to stay here!

 

I could not use the path unaided and felt that the pathway was so unsafe that it put my travelling companion at risk of injury.  Never have I left any accommodation before due to inaccessibility. I have discovered there are no standards when it comes to accessible accommodation

I was taken back with the correspondence with the owner.  I never apologize too.  Instead I and my travel agent was blamed.  So if you don't have a wheelchair and you don't mine rude people then the Outback Lodge may suit you.