Choices

You’re life! You’re Choice! Is the name scribble across the document Your Choice, but these words are meaningless to hundreds of Queenslanders with a disability and their families who struggle to gain the support just for the basics needs, like a support worker to get them out of bed.  Make no mistake the disability funding system in Queensland is critical ill and has been for 20 years.

It a System where the needs of people with disabilities and there families by the departments our admission can not be meet by current funding levels. Consecutive Queensland State Governments and policies makers have failed in there attempts to address the growing needs support needs of people with disabilities.

From my view vantage polices made surrounding the needs of people with disabilities swing from individuals having power over decision making process back to organisations being the major stakeholder in the decision making process.

Despite the rhetoric under the current “Growing Stronger System” the decision making processes that surround our lifestyle choices and support needs, lay at the feet of public servants making and currently in Queensland may positions are being axed, its a frighten time to be living in the state. Decisions about our personal lives with a file no. due to privacy our names are not on files.  In a true reality people with disabilities support needs are reduce to a dollar amount attached to a faceless number on a file. See (     A better disability system) for relevant documents.

Recently I was speaking to a Senator about the NDIS before Campbell Newmann made a half-hearted bid to support the introduction of the NDIS. It at these times I want to throw my hands in the air and say ‘there are no answers’; to ensure individuals with a disability have the right to identify and be supported to gain a lifestyle of their choosing.

The senator informed me that per head of capture a people with a disability receives on average $2000 per head, per year. If the government is spending around $20 000 per year on my care that’s 6 to 8 people with disabilities and their families that receive nothing at all.

The current system is at such a crisis point in Queensland that many public servants in the department admit its is irreparable.  While the State government remains primary responsible for the care of people with disabilities, it at best can only offer a few band-aids of inappropriate care.

From the late 1970’s when our larger care institutions close its door, the Queensland government had it wrong from day one and thus has struggled ever since to correct the balance to provide support to everyone who needs too. In the main the department was originally support people with a disability to move out of institutional care and living in the community.  These costs were hugely over estimated resulting individuals given amounts of money they could never spend. However, initially the money was assigned to individuals and was not attempted to be based on individual need.  So people previously living in state care were assign packages that don’t need, don’t used and can’t be taken from them. The people given life time packages in late 1970’s and 1980’s under then legislation retrain their funding until their death, until the time of their passing the money sits in a government bank account. Thankfully that kind of rational and individual lifestyle packages no longer granted.

This fundamental floor was compounded by a failure to include in its a system that catered from people with a disability not previously living in state care, people born after 1980 with a disability or those who acquired a disability during their lifetime. Is it any wonder a system founded on two fundamental floors is irreparable?

By its own admission the current system of disability support is layered system where individuals are locked into rules the funding system which they were originally granted funding. Under such a fractured arrangement funding can never fairly be divided. No wonder there is opposition to the NDIS and a healthy sense of skepticism.  

So lays the misconception the all people with a disability are funded on a level playing flied and if you need help you get it. The truth is gaining a faction of the help needed, is like winning the lotto!’ I wouldn’t pretend to able to explain to you in any more detail how funding is structured, this comes from my own very limited understanding.

My point is to dispel the notion that Queenslanders with a disability have the same ability to make lifestyle choices as my readers.  Most of us like to think we have a choice in where we live and the type of accommodation, to my horror I discovered this is not presently the case for people with a disability in Queensland, who have high level care needs.

For those needing more than 8 hours per day support, choices increasingly become limited.  Last night I learnt of the plight of a young women of a disability who has increased support needs and has been offered a placement in a group home hours from her current home, because ‘that’s where a place  is available. If she declines the offer she losses all existing supports, including assistance to get out of bed in the morning.   Not only is this women about to loss her ‘own home’ and her independence but she will be removed for her ‘natural support networks’ and existing friends.    

No consultation and no choices, rather blackmail move or receive no support at all. I admit this is here say and I have no details of how the miscarry of justice has occurred. I can only stab in the dark to say she has no individualized funding and it is linked, like my to the service provider. Gone are the days where offers must be in a set geographical area.  My community link officer has said she had to offer people living in Ipswich placement in a day service in Toowoomba knowing it is impractical.  As to how they can legally withdraw current services from this poor lady, I am unsure. All I know under the growing stronger legislation people with disabilities seem dis-empowered to make choices about their own lives.

I am hoping to write a series of ‘posts’ aim at helping others outside ‘the system’ to understand our plight. The disability system is without rhythm or reason.  If you have a questions please let a comment if there is an answer I’ll track it down but often the an answer defy logic. . . Welcome to our world.

The girl without fear. . .

Marlenea Takes to The Sky

As I embark on my 2013 journey there and achieving my goals there are many obstacles I fear. One is living within my own limitations, something I don't do well.  I find myself wanting to embrace every opportunity and make the most of each day.  Despite living with chronic illness and pain for 20 years it still cramps my style.

While there's no hiding the fact I have cerebral palsy, I do my best to hid my other disabilities and work around them to achieve my dream.  If I think about living sensible I find I can manage my fear. I can hope, I can dream and achieve.   I am by nature a person that like organisation and planning.  Growing up it was these skills that enable my to thrive, however living with unseen disabilities that only my closest friends understand the skills can also be my undoing.  I often know when my dairy looks overloaded, but dealing with it and preventing it is another story.

Often the hardest thing is comparing myself to other people. Look what their achieving they have CP too.  Often it is others with disabilities who don't see what I manage to hide so well who want to push me to do more and play harder. And by comparing myself to them I do myself no favors.

I am confident I can achieve the goals I have set myself for 2013 if I play by my rules and listen to my body and its needs.  While my mentors are going to have their over suggestions I need to be focus in my mind with determination not to let others push my boundaries.  

Yes Marlena is a wonder example of someone who pushes the boundaries and challenges the norm.  However I would do well to remember Marlena is Marlena! She is on her own leadership journey and her goals are very different to mine. Our approaches to life many look very different, but we have similar leaderships goals and values around not being stereotyped and what a world of social inclusion should look like.  So I'll leave jumping out of planes to Marlena, she is after all, a few years my junior and I get on with preparing works of art for my  art exhibition. That way my fears are at least keep at bay.

Let's Talk Life!

9 am Tuesday 8th - 9 am Wednesday  9th January 2013
Moorilla Hobart International - Domain Tennis Centre


 Moorilla Hobart International – Domain Tennis Centre,

No one likes to talk about death, so Let's Talk About Life! I love to talk about life and make plans. I am not one to let opportunities pass me by, for there is no certainty I'll walk up tomorrow. We're great at making plans to achieve our dreams but fail messably to talk to significant others about our final hours on earth and our wishes after we're.

Yet of a percentage of us death is sudden. These deaths are often cause by sudden death of the brain, when their a few hours left of life in our body. This is a terrible situation for anyone to face.  The shock and grief are hard to get your head around. Sadly it is at this time you be approach to give the gift of life to others. While we can't prepare for such tragic loss of life, we can prepare or brace for the question, 'have you thought about organ donation?'.

If as a family you have already discuss this and decided, the questioned has already answered.  Sadly, there are 100's of people around Australia on transplants list, waiting and hoping for a phone call to offer them The Gift of Life. No body wants to talk about dying or even our own mortality, but taxes and death are about the only two certainties in life. Sure its better to have a conversation about organ donation with out the stress cause by immediate loss of a love one.

Sure you might never be asked the question, however someone, somewhere is asked everyday, have you thought about organ donation. The window of time is ticking every time someone is asked that question and there is 100's of families praying someone will give life in a terrible moment of loss. For information on how to have these discussion and to answer any concern you have visit the Donate Life Website.

Australia still one of the lowest rate of organ donations in the world. Events such as  Game, set and match raise the awareness of the need to talk about organ donation. So that makes tomorrow a great opportunity to Talk Life! 

The Rewrite . . .

Like our novels, plays and poems the stories of our lives are constantly changing and often throwing new challenges and opportunities in paths. Like many people the new year presents an perfect opportunity to look back at the past year and assess where I am going, and if I on the right track.  Life has so many forks in the road, that it’s so easy to get off track and lose sight of our goals.

As a Christian in the past I’ve been terribly concerned if I’m on the right course? How can I be sure that I performing God’s chosen work for me? The bible is not really clear on what my individual purpose is”?” or is it?

Well it is pretty clear that I am an ambassador from Christ, my role is to represent the kingdom of heaven here on earth.  Well that’s pretty clear.  An ambassador represents his or her country while they are aboard. So my role as a Christian is to represent Christ in his absence. A representative usual carries on the mission or duties of the person they are sent to represent.

Jesus was single minded is his work on earth which was to complete the work of the kingdom and restore man’s relationship with the father. As a Christian my key responsibility is to inform others of the open invitation to the kingdom of heaven and conduct myself as a worthy citizen of heaven, so I can model my behaviour on the principles out lined in his word.

So many years ago, I decided to give up the notion of making sure I was on the right path according to God’s will and focus on doing God’s work while continuing on the path I am on.  Sure there are times I take the wrong fork in the road and find myself retracing my steps, but if I am living by the principles of the kingdom of God its pretty difficult to find myself living outside His will.

So what’s this about rewriting? Rewriting is not starting over, rather refining what we have already written. Perhaps we what to clarify want we are saying, or simply use less words to say the same thing. Sometimes I find I want to incorporate a new character or idea. When I find myself rewriting my goals its not because my goals were wrong, but to added clarification, direction and embrace an opportunity I didn’t previously know about and that what happen this week.

In redrafting my leadership goals, I gained a clearer picture of what I wanted to achieve through the leaders of tomorrow program.  I was able to reclarify and reorganise some of my goals. In order to reach my goal to encourage other people with disabilities to undertake roles to help shape the future of Ipswich.

Adventure All The Way!

Wow! I thought I have a spirit of get-up-and-go! I have tried to live my life determined that my disabilities would never define who I am and what I could achieve.  And in the main I have been fairly successfully, achieving all my mild stones goals. Like attending university, writing a book,  even living independently and now looking at making my art more publicly available.   However, my very limited understanding of what is possible has recently been challenged.

Sight Seeing in New York

This challenge came from one of the 2012 graduates’ of The Leaders for Tomorrow, “Wild Thing!” Marlena Katene, a young lady that obviously has no time to worry about how others may perceive her; preconceptions of what people with profound disabilities can achieve; what is safe or normal. Make no mistake this is a woman who knows her own mind and sets her own agenda.

Marlena Tackles Human Nature 

My first introduction to Marlena and her journalistic talents was on U-tube Marlena interviewing Rove . Marlena has big ambitions  in terms of her career goals,  such as being the next Molly Meldom, minus the hat of course. I must say given she is still a student  and has already has interviewed the likes of Rove, Snoope Dog & Wynter Gordon, Joel Parkinson, Ricky Martin, Delta Goodrem and the guys from Human Nature, she has already earned respect as a journalist in the entertainment industry and has a huge career ahead of her.

Marlena Chatting with Delta Goodrem

Outstanding achievements for any young woman of 22 years of age, yet astonishingly Marlena has little control over her vocal cords and needs to use her ipad to communication and the frustration the relying on technology to assist this process. However Marlena holds not fears and seems to be the kind of person to jumps in with two feet and worries about technical hitches later.

Yet her journalist interests are only one layer to the life this lady lives at full speed. Marlena is very entrepreneurial  in her outlook on the future and in not way content to sit back and wait for opportunities to come her way.  Currently she runs a jumping castle business on the Gold Coast.  It seems this amazing lady has a huge personality the draws people into a small team around her to get things done.  Not sure how much she pays her staff to lug these huge jumping castles round to birthday parties and markets every weekend. Rest assure Marlena Katene is one Australian with a disability who is not going to rely on your tax payer dollars to support her.

Marlen's latest addition to her castle kingdom.
Burliegh Bouncers
Jumping Castle Hire

While my dreams involve tackling Disability Awareness in Ipswich so people with all types of disabilities can have a voice in their choose life path Marlena is tackling the world head on and holding her head up high.  With people like Marlena beside me I am confident a world of social inclusion is not very far off.

The world is Marlena's playground and her journey just began . . . 

I believe in tomorrows becoming todays. However Marlena my friend I am still not coming skydiving with you next week!  

Leadership Dreams

In December I was fortunate enough to join the Leaders for Tomorrow Program. The program is funding by the federal government. In my understanding it is a prequel to the NDIS. The program is about support people with a disability to embark in leadership roles in sport, arts, culture, employment and government to name a few of the options. 

I  am really excited as I started my leadership dreamings and exploring some goals I like to take a stab at in 2013 and beyond.

Leadership Retreat December 2012

My Leadership Dreams

My leadership dreams center around full social inclusion for people with a disability in the Ipswich region. In my travels I meet many people with a disability who I think could help shape Ipswich into a great city for people to live, work and play, however aren’t given the opportunity to do so. During 2013 I want to gain skills to enable me to encourage other people with disabilities to be more active in our community, workplace and decision making processes.

Not side by side, where people with disabilities have an opportunity to shape their futures, rather where people with disabilities work with others in the community to influence the future directions of this great city.

Big dream huh? That’s just what they are dreams rather than goals. However, while my local community is my target, eventually there’ll be 200 leaders with a disability across Australia working towards similar goals. 

My goals span over a 10 year period, so you’ll be happy to know, I’m not planning to achieve this in 2013! Currently I have 4 goals I wanting to work towards.  Some goals will be completed by 2014 but most won’t.

  

My Leadership Goals

I am hoping my passion for the ‘arts’ will take center stage in 2013, as I work towards achieving my goals! Including working towards my own art exhibition in 2014!

2.   An art retreat to train artists with a disability in the West Morten Area in their area of arts interest.

3.   Working towards Disability Awareness in Ipswich city.

4.   Training and mentoring people with a disability who seek to engage in leadership positions which  will enable them to help shape the future of this region.

While my goals centew around working with people with disabilities in 2013, my dream is this will launch then into main stream community involvements through their own individual interests, whether the be sporting, leisure, the arts, leadership in the workplace, education, advocacy roles, community roles or political.

Of course a large part of my dream is dependent on the introduction of the NDIS.  So as part of my new role is  assisting with Disability Awareness in the Blair.

Looking forward to sharing my leadership journey through out the year.

Madman or Victim – Where is the love?

On December 14, 28 people died in the small town. Newtown, Connecticut. However on social media sites such as facebook and twitter the focus has been on the faces of 20 school children who went to school happy and who never return home.  Other memorials recall the heroic acts of the six teachers were gunned down in there attempts to save the lives of their students. There are a few who included the mother, of thus man who took 27 lives using three of her four guns.  Only the odd tweet and posts remember a young man, who was hurting so bad that the only way he felt he could express his hurt was to take the lives of 27 people before turning the gun on himself.  He was so angry that taking his own life was no enough.

As a community and perhaps humanity begins to look for clues and answers of how to stop these mass killings from occurring, the truth is we will never know why or fully understand why this man, choose  this day, at this time to take 27 lives with him to the other side of life.

While thousands are blaming gun laws and other blogs are debating who is a good person and ‘what is a bad person’.  Deciding the children are angels in heaven and the ‘bad man’ has gone to hell. The real question is how did society fail this man so badly that he killed 27 innocent people? It is this thought that leads me personally to label the man the 28^th victim.

Was this the action of a madman? I am not sure as I have not seen him as a patient for psychological analysis. However one would be hard pressed to say these were the actions of someone with a sound mind.

Rather the events of Dec 14 were planned by a young man full of pain, hurt and anger. The question is not why he did this. I doubt there will be a logical answer. But what were the cirmstances that lead to this powerful display of violence? I like many can’t help the questions my mind has asked since the shootings? Why, was he hurting? Who hurt him and how?  How many times was he hurt?  Was it one person or was he abused over many years? What was his mother like? Why, was she a gun collector? Did he hate his mother? If so, why did he hate his mother? Was he jealous of the school children?  Did he wish he wasn’t home school? Where is his father? Did he blame his mother for letting someone hurt him?  All questions to which we will never for certain know the answers.

Was he a ‘madman’ or just a ‘bad man’, as others have suggested.  Being so young some may might be tempted to ask if this young man was just ‘born evil’. As a Christian and a Behavioural Scientist I do not believe a person is born ‘good’ or ‘evil’ or just plain bad.  The bible tells us That all have sinned and fall short of the glory of God.

Daniel Scott whose daughter died in the Columbine School shooting describes the balance of good and evil present in each of us; "Since the dawn of creation there has been good and evil in the hearts of men and women. We all contain the seeds of violence.  The death of my wonderful daughter, Rachel Joy Scoot, and the deaths of that heroic teacher, and the other eleven children who died must not be in vain, Their blood cries out for answers."

When we are born we have an inheritant natural to do the wrong thing.  Our parents are usual the first ones to help us understand right from wrong.  Later there are school teachers, pastors, Sunday school teacher, Principals, policeman and bosses who help shape our understanding of the concepts of ‘good’ and ’evil’. Sadly not all people who influence our children’s lives are the types of influences we would choose for our children.  So often we here the phase “he or she has fallen into the wrong crowd’.  This is what is known as the ‘nature’ of the child vs the ‘nurture’ of a child.

To blame this young man’s parent’s for his unstable mind and any faulting thinking would be wrong.  A person’s behaviour is generally the end product of the chemical make-up of the brain and the sum influence of their environment. In other words society as a whole shapes who we are as individuals.

Sadly for some people their personality make-up might be such that the negative influence of even one or two people can determine their choice to perform what we may call bad acts.  However others seem to undergo tremendous trauma and go on to live what we might call good lives. Of course we know there are times when human behaviour is chemically altered by illegal drugs and alcohol.

Nor will the call for tighter gun control prevent further school shootings.  Again the voice of Daniel Scott expressed this so well to Congress "I do not even own a gun. I am not here to represent or defend the NRA - because I don't believe they are responsible for my daughter's death. Therefore I do not believe that they need to be defended. If I believe they had anything to do with Rachel's muder I would be their strongest opponent."

It is interesting that Conneticut has some of the strongest gun laws in the USA, and yet they did not prevent this tragic event.  This man first tried to buy a gun, but was unable. Not living in a 'gun culture' I do not begin to understand why anyone would want to own a gun, other than sporting reasons.  I am sure individuals have a variety of personal reasons for gun ownership.  Australia has some of the toughest gun regulations in the world and yet their were two separate shootings on the news this morning.  Our gun laws fail to provide us with full protection to pretend otherwise is foolish. "Guns do not kill people! Other people kill people". Guns just mean hat killing on a large scale such as we saw in Newtown is possible.  The are many of ways people find to murder people for whatever reason. 

Hopefully the thoughts I have expressed here show fruitless the search for answer is with complex individual such as ourselves.  For whatever reason this man was hurting and we as a collective society “unintentionally” fail him.  Leaving me to include him in the count of victims in the Newtown School shootings.
 
   

'Perhaps hate is best describe as the absence of love'
Please take every opportunity to let your children know they are loved.