Everyone has potential!

October 16 2013 is Blog action day! Its a day where bloggers around the world link up through social media to draw attention to a single issue or event. This is the 4th year I have participated in the event.    Every blogger taking part in the event has a badge to signified their participation. For more information visit the website

  The theme for 2013 is HUMAN RIGHTS. When I think of human rights I naturally thing of issues such as children sold in to sex slavery, the treatment of women in the third world; restrictions on religious practices and children captured by the IRA in Africa. 

However, human rights issues are involved wherever a restriction on individual choice is made.  To read more on current Human Rights concerns for the UN visit their Human Rights Page. 

Right now, it may shock you to know a large Human Right  Issue is emerging here within Australia. 

It's the issue I wrote about in last years blog post for Blog Acton Day or BAD#12. The National Disability Insurance Scheme or the  NDIS. Since that time the NDIS has undergone a name change and current under trail in five states around Australia, and will be phase in across all states over next five years.  Recently here in Australia we had an election and the new government has reverted back to the name of the NDIS.

For the first all levels of government across Australia recognized that people with disability and their families have the right to CHOICE. This recognition brings us into line with the UN charter of Human Rights. In making this recognition Australia highlights the are different possibilities for individuals, regardless of the nature of their disability and the level of impairment.  

However Australia has a long road to travel insuring the Human Rights of all Australian's living with disability have all their basic Human Rights meet. Even in Australia people living with disability are three to four times likely to be living below the poverty live, have little say about their residential address, are denied basic medical treatment on the bases they are already disabled, 1 in 3 women with disability experience some form of sexual assault with is higher among women living in residential care and most preputaters are male staff.           

This is a no frills approach to disability care. 

• No choice in meal times
• Little choice in what they eat.
• Set shower times
•   Clothing chosen for them
• Set activities

These are major breeches in the UN's charter to Human Rights. Breeches that could cost Australian its position on the security council.  Other issues include better access to the community, transport, education, skills development, full employment and  equal pay issues.  It is undeniable that Australians with disabilities continue to have restricted choices and at high risk of abuse from those who care for them.   

Hearings and reports to the UN have recently taken place. On blog Action Day I am going to tell you some person stories of breeches I know of in terms of Humane Rights.  

The UN eyes are on us!

When we think of human rights is often involves young girls being sold into the sex salve industry by families in Asia and Africa or children being recruit to the RIA army in Uganda.  However this week the UN in Geneva has it eyes fixed on Australia for breaches in Human Rights.

The UN is demanding Australian lifts its game around its treatment of people living with disability.  Members of Australian Society living with Disability are marginalizes from  the community and yet to experience full integration into the community.

People with disabilities experience isolation, unemployment, underemployment, poor access to education, lack of appropriate health care and barriers to gaining access to mobility equipment and communication devices.  This is in one of the most prospers countries in the world.  We escape relativity unaffected by the global financial crisis.

Parents needing to fundraise to by a wheelchair for their child and then wait for the chair to be prescribe only to wait years for a chair to arrive, more often than not to find the chair that arrives at the doorstep is unusable due to the grow of the child.

The week the UN puts Australia on noticed and their timing couldn’t be more appropriate with Australians going to the polls on Saturday. While criticisms of the Labors parties handling of Disability Care Australia continues, the LNP is not clearly define the changes it will make to the system and how it will be funded and maintain. 

On the human rights issues concerning people with disabilities and their continual marginalization   the LNP remain silent. Is their attitude towards refugees and turning back the boats policies and indication on how under a LNP government, Australian will continue to fail to meet the Humane Rights Standards of the UN when it comes to people living with disabilities.

Is that something as Australians we are willing to accept?  Unless we lift our game we will find ourselves in danger of losing of seat on the UN Council.

Disability Care Australia is not the latest response to fund the support and care needs of Australians with disabilities.  It is a response to allow Australia to meet the standards of Human Rights of all Australians as outlined by the UN.

A summary of the UN's dialogue can be heard here 

Take a look at ArtISabiliy

ArtISability - Professional Development Program 

For Visual Artist Living With Disability

4th to 6th October 2013

Eligibility

Must be over 18

Have a disability that requires support

registered with a support agency in Ipswich, 

Access Arts Queensland or on the Disabilities

Service Queensland eligibility register. 

Be an emerging artist that can demonstrate

knowledge and/or skills in visual  

Desire to connect to the Ipswich Arts Community.

Email ArtISability 

for an Information and Application kit.

Debbie Chilton

Project Officer  

Goals Posts for Support Workers

In terms of the commencement of Disability Care Australia little has been discussed in terms of the most significant relationships in the care of people living with disability and their families.  This is the pay role of a support person.  Under Disability Care Australia a support person may be a teachers aid, a therapist, a paid attendant carer, a nurse, paid carer or support worker.

What role and how a person is ‘employed’ after each state switches to the new system should  look very differently from worker to worker and be different for each individual client depending on their support goals.

The Game is About to Change

For the distance the day to day operation of Disability Care Australia may not look any different except for an expansion of the number of people who are able to be supported.  Once fully implemented in Queensland, about double the number of people who currently receive support care will be supported by Disability Care Australia.

A lot of confusion still exist in the Community about who will be eligible for support post 2016 in Queensland.

ü  A young person with a significant disability who requires assistance with daily living and their direct caregiver and family where appropriate. (Under the lesigation a young person is someone under the age of 65 as at 1^st July 2016).

ü  People with disabilities who have disabilities or acquire a disability will continue to have their needs provided for by insurance, private and public health systems, rehabilitation services, age care services – such RSL Care and Blue Care which are currently predominately services which support older Australians and Veterans Affairs.

ü  Disability Care Australia will not cancel out or override existing government departments and services, such as the public health system, the age care system, mental health services, Government Housing and Accommodation services.  The departments will continue to operate independently of Disability Care Australia and can be access by persons with or without disability.  For an example regardless of a person age and ‘ability’ status the same application progress for government assistance for housing will remain post 1^st July 2016 in Queensland.

ü  What Disability Care Australia aims to do is close a gap in service provision for younger Australians living with disability.

ü  Currently there are around 6500 people with disability living under the age of 60 permately in nursing homes around Australia. Thus a fully operational Disability Care Australia will free up around 6000 nursing places, that is a increase significant in the number of older Australians who experience disability will be able to access age care because younger persons with disability will not longer desire that type of care.

ü  Similarly for many years I access Home Care Services because I was unable to have my needs meet under any other funding means.  It was a system that was never designed to meet the needs of a younger person living independently with a disability.  Waiting all day for someone to come and shower you two days a week was not conductive to finding employment and often resulted in inappropriate supports.  Again the introduction of Disability Care Australia sees a removable of younger Australians from this services making room for support of older Australians living with impairments the support and assistance the need.

ü  The freeing up of these vital services for older Australian’s living with disability should have a follow on effect. With the transfer of public hospital patients to nursing homes happening more freely,  more hospital beds and rehabilitation beds should become available. The introduction of Disability Care Australia should have a follow on.

As we move from a system that has been dominated and driven by service provision to a system of disability care which is designed to be market driven. A system that is drive by a market is a current that moves according to demand.

The Game May Look The Same

In the disability service industry that will mean the market will become directly driven by the demand of services from people living with disability. Not longer with the government be the gatekeeper of funds.  Funds with be directly accessible by clients and their families to buy the equipment, therapies, teacher aids and support services they feel will best meet their needs; or needs of their family member or person the have guardianship over. And yes where the Adult Guardian Board has guardianship of a person with a profound disability it will by the Adult Guardian that has the direct buying power of services and equipment.

This means in regions where there may be an over supply of support service the forces of market mechanisms may be particularly felt. This could felt  in a number of ways.  The service fees a provider charges may be force down in order to complete with other services, this will have some impact on service delivery as services not compete more directly with each other. However, the opposite may or may not occur in a region which is traditionally under supplied.

Changes under Disability Care Australia also mean people wanted to buy a support service will be able to for the first time approach a genetic service such as Blue Care or private OT and bypass disabilities services providers altogether.  Within this new delivery system there the freedom to directly employ support workers or cleaners.

The services, the clients and the workforce may look the same buy the empire is govern by very different rules.  Support staff and services will no longer be able to decide how there services will operate or when.  If the service delivery is not what, when and how a client wants, they with be free to look at other services and change.  They may like they way one service provides personal care but use another service to meet their respite care needs.  In a market which is control be meeting the support goals of an individual, a service offering a substandard or even standard service may not survive in a open market place.

At the front door to a disability support service provider stand the staff. These are the people who provide direct support needs to people with disabilities, run supported accommodation, man the respite care day or residential services, the therapists and teachers aids who have the day to day client contact. Potentially it is these frontline workers who will feel the shift in the rules the most. As the clients, families and guardians have an empowered role in how their needs are meet, those caught giving standard blanket care service delivery, will see a decline in work.

The goal posts are further and higher than ever before.  The goal is no longer to keep your employer happy but meet the needs of the clients in the way the want them met.  Regardless of whether you chose to work for an independent agency, be self employed or remain will your current employer it is the client who is paying your wage.

Not that this is visible by any direct change. The way you are paid and your entitlement should remain the say as clients and family members under law must use an independent broker or their funds.  No money will be going into anyone’s direct bank account unless a service provider is nominated by a client to directly allocate and distributed funds on behalf of a client in a very simular way they do now.  Except for one major difference at anytime they are free to request their funds and move to a number service or means of administration for the funds.

From the time a client enters into and agreement with disability Care Australian it is them who decides the level of service delivery they want and what the are prepare to pay for it.  If I know Sally does more housework  than Sandy in an hour at a higher standard, I am going to request Sally, When Peter is more respectful and more fun to be with, than Paul who supports me every other day, I going to see if Peter can work with me more often.  If Jo takes my son to the same park everyday for fish and chips and John takes my so to lots of different places and gets him to eat differ foods and engages him in lots of different activities I not going to be to keen for Jo to support my son us his an considerable lower rate of pay.

Clients and families will have a direct say in their support staff.  If their not happy they know their funding can be moved to another service provider. Staff who repeated have declines from clients will either sit on the books and not get the hours they need or be let go. Staff performance with be one of the biggest challengers as be move to a market driven disability service.  Is you kick stronger enough for the changes, Disability Care Australia will bring.      

Disability Care Australia (NDIS) the first step towards full social inclusion

Exploring possibilities

The introduction of Disability Care Australia is a revolutionary concept that is designed to encourage and enable greater community inclusion of people with a disability.  Through the promotion of individual choice and the first real opportunity for people with significant disability and their families to have self-direction for their life based on their own hopes and dreams for the future. It is hoped where feasible people with disabilities will engaged in all aspects of community life give the right early intervention and support systems in their lives.

This is a move away from traditional values and attitudes that have previously seen people with disabilities  become isolated in their community either through disability or the time commitments involved in caring for a family member who has a significant disability meaning even family members have been excluded and isolated.

As we walk towards the implementation of Disability Care Australia previously known as the NDIS the challenges before us are great.  However our biggest challenge before us is to change the way we limit and define what is possible for a child or adult with disabilities, we in the past our expectations have been low and very limiting.

Along with improving physical access to buildings, the workplace and public transport we to need to see a major shift in attitudes towards people with disabilities and the inclusion of their families. If our attitudes, especially those of us who work in the disability sector are not challenged and expanded than the hopes and dreams of thousands of NDIS campaigners will be lost at we stand a the precepts of a revolution to ensure the social inclusion of people with disabilities.

This includes one of the biggest challenges for us, employment. People with disabilities tell us they want to work, however at the same time they have the right to meaningful employment and fair wages, not just the type of employment opportunities offered by sheltered workshops in the past.  Working towards full inclusion will require us to expand our horizons of what is possible even in the workplace and even force us to look for alternative ways to achieve our goals and work results, as seen in this story. 

 ABC journalist breaking new ground - ABC News (Australian Broadcasting Corporation):

'via Blog this'

I personal believe we have much to learn about ourselves, our attitudes and the self determination of people with disability and their families before earn even begin to let go of out previously preconceptions of what is possible and deactivated this inbuilt tendency to overprotect those with disabilities.  

Let us be excited about the possibilities tomorrow can bring . 

Disability Care Australia comes to Queensland

Taken by Judy Dickson on behalf of ALARA Association. 

Yesterday I was privileged to witness the combination of many years of hard work and determination by people with disabilities, their families and those who care for them.  As Julia Gilard an Campbell  Newman signed the historic agreement between the State Government of Queensland and the Australia Federal Government. 

To people with disability and their families this is about much more than funding to meet their day to day needs.  While by 2019 some additional 50,000 families in Queensland will have their support needs meet for the first time.  The real victory for NDIS campaigners in the revolutionary thinking build this world class system. 

Like landrights for indigenous Australians and women gaining the right to vote, for the first time our leaders have acknowledge our right to the quality of life other Australians enjoy.  The legislation looks specifically at real inclusion for people with disability for the first time.

Its a long road head until the 50 000 Queenslanders who currently have no assistance receive the help they have hounded the Queensland government for decades. But certainly the signing yesterday was caused for celebration.  

While for some its a case of too late, the real work and challenge for service providers is ahead as we make the shift from service provision to a true market place where people are empowered to make choices about their lifestyles.

So to does the challenge of bring about community awareness.  What is disability?  How does it impact the lives of  those affected? What are the true abilities of these people to contribute in real and meaningful ways to our society.  The real challenge for us is  the challenge to long term attitudes towards people like myself who had enough of watching life from sidelines.  Its our time to join in and enjoy all that life has to offer to leave the house!  To go to work or study.  To be creative and use the same innovations we use to create and design the NDIS to create small business and design technologies. 

History in the making as documents are signed 

to allow the Introduction of Disabilities Care Australia. 

             

That's The Way It Is . . .

I love honesty I just don’t always know what to do with it. I had a conversation last night that confirm some of my conclusions around the right to choice issues for people with disabilities and their families over the last two weeks.

I was discussing with my support work my choices around my home and its appearance. If I didn’t need her assistance to vacuum, clean the kitchen and mop the floors.  I’m not sure whether the debate we had last night would have occurred.

In an attempt to avoid confusion for this particular worker I write a ‘wish list’, Things I want her to do. The trouble is when she reaches the end of the list, she see that as an open invitation to do what ever she likes to my place.

On of the issues of having up to 8 different support workers in my hose each week is what I’ve come to term the ‘Sulkily Effect’,  Debbie clear of the coach yesterday and the support worker put all the tem back on the coach, last night.  So once again my art covers the coach and visits have to sit at the table.  Which is not the way I planned to use the coach at the time of purchase. However yes lately that is how the coach has been ‘in use’. Thus, at least in this workers view, that’s how is it. (A fact!)

Hang on! Isn’t this my house we’re talking about? Doesn’t that give me – the rent payer the right to chose to change the appearance of my home, without the need to provided reason and justification for that choice. Obviously I was last night required to give one.  

Fairly in return the worker offered her own justification and as I said I love honesty, I just do not always know what to do with it.  Logical the only reply, I could think of was it’s my choice because I am the person paying the rent.

The workers case is she is doing her job (I agree that statement is an undisrupted fact). The ‘fact’ under disrupt is the way she is doing the job isn’t the way I want it done. This worker argues that this is the way she is – this is how she thinks and she can’t not change.  Her definition of her job is to tidy my house to her standard and questioned other staff who under perform. I sense see views the situation as a stale mate because see is unable or unwilling to compromise her work practises.  My house is her workplace, my hunch is that every clients house works in has her stamp on.

My view is a ‘support worker is not a cleaner’, and her deciding the placement of things in home is stealing my freedom of choice away.  Those annoying like dust collectors know as doilies are about to be packed up to go to lifeline so they can not be dragged out of the cupboard ever again. The only way to put an end to the ‘Polly putting the kettle on game’ is to vanish the doilies from the house. Yes my cupboards are raided at will. Note to self: don’t keep unwanted gifts or support workers feel free to use them.

I am annoyed that workers have a sense of right to open things simply because their in my house and the item is meant be used.  I don’t known how to view these actions any other way that an invasion of privacy and rights. These workers while paid to assist with housework are not cleaners and those not expect to have the autonomy of a cleaner.  Even if they were cleaners they should respect my standards of clean.  

This is an example of the one size fits all approach. This is how I would and why should I change for you the client, when you’re not even paying my wage.  Can you see how disempowering this is for clients argue for their right to choice.

The simple choice of whether to pack away my art supplies or not art night and where and how to store them is taken away because a worker is inflexible to work outside her confront zone to allow my house to reflect my artistic lifestyle. I am forced to respect her work style how is that client choice? 

However, for many workers that’s just the way it is and the case is closed!

The journey through the maze of life

One activity I remember doing with my brother and sisters when we were growing up on a rainy day, was competing to see who could solve the maze in their puzzle book first. For this sole purpose my parent we made to purchase 5 copies of the same book. Reflecting back we really were a competitive bunch and sibling rivalry was alive and well in our family.

Today mazes are made much larger and you can get some serious exercise at the same time.  One tick I remember using to out smart my siblings was to work backwards. It often worked until they cotton on to my method and began working backwards too.

However life is not like that, yesterday always lies behind us and tomorrow ahead, we can’t use the knowledge we have today to return to last year to solve the maze.  One of the temptations as a child I remember was to cheat and cross a boundary line to cross the line first, but each winning puzzle was careful checked to ensure no boundaries were crossed in order to claim first prize.

The maze boundaries pictured above look much more secure than those on the merger lines in our puzzled books growing up. From what I have seen of these mazes on television the hedges are head height of the average adult so there no cheating by peering over the top, the person in the maze must keep moving forward to make their way out and a lot of your success is based on memory.

Our memory of the past or the sum of our successes and failures are one of the keys to travel through the mazes that life presents.  We are required to remember the mistakes of the past if we are not to repeat them and fall into the traps. 

As a Christian the word of God provides clues and warning signs as we travel through the maze of lives. The bibles has laws, guidelines and principles I use to have me navigate through life. Others view the bible as an irrelevant law book and toss it out the window and run the risk of living a life protected by the principles I have in my life. That is a choice that God gives to mankind, the gift of free will, we we’re program to think and feel a certain way like a robot.  However that is sadly how many view his word.

Yet many laws that govern our nation are built on the principles taught in the bible. Australia laws as we have seen in my previous post have conquences if we chose to break the law.  Laws are designed to protect us from harm.  Just the hedges although confusing at times keep us from staying off path. 

I imagine it would be tempting to enter a hedge like the one in the above picture with a hedge trimmer to cut my way through, just like the temptation we had as children to cross the boundaries lines of the puzzle book.  I am sure some type of fine would apply if I chose to act on this plan.

Likewise there are principles to protect me as a client of disability services Queensland. The policies and procedures that underpin the Policies of the State government are often part of ‘an act’. That determined Queensland laws.  The laws as those presented in the bible are design to protect clients with a disability; their families and their support workers from harm.

For example everyone who works in the disability sector much hold a yellow card, including me as a volunteer.  As a holder of a yellow card and a person who has responsibility for the care of people with a disability, by law I must have a police check every two years to protect the people entrusted into my care.  As someone who overseas the finances of an organisation the government wants to make sure I am not going to take the money given for staff wages and go off and by myself a yacht. 

I have never herd a support worker who has supported me to complain about a police check every two years, in the same way the tell me the policy that prevents us form becoming  friends is ridiculous and yet both are policies written by organisations that support people with disabilities that are underwritten by law for our own protection.

I may think that the Ipswich City Councils decision to put parking metres in the town centre is stupid. However my person opinion does mean I don’t drop the required coins in the slot and display the ticket on the windscreen of the car to avoid paying a fine. Not to comply to policies that are derived from our state laws has conquences.

My annoyance is when support workers decide they are not prepare to work within the policies and procedures written to protect both of us is the put me at risk as well as themselves. Life isn’t always about us and what we ‘feel’ is ok or we ‘think’ is stupid like the council’s parking metres of the hedges we can’t peer over, our choices right or wrong sometimes effect the lives of others. In the disability sector ultimately that is the frontline workers and their clients.

One example of a policy workers tell me is stupid is wearing gloves for food handing. I don’t wear them at home. . . and just maybe I might agree, but even so like the Ipswich Cities Council decision to put in parking metres I am required to comply.  Gloves for food handling isn’t a rule picked out of the sky to make a workers life miserable is a policy that we board members (my workers forget I am a policy writer making me public emery number 1), are required to have under work, health & safety laws.  If a client gets food poising and dies and the bacteria  is proven in a court of law to come from a support worker and the organisation had no policy around food handling its me in court not them. So sorry I have little sympathy for workers who hate the feel of gloves.

Similarly foot ware often becomes an issue in summer, and in winter it I don’t want wet feet. If I take my shoes off and fall its my problem. Not sure there aware their just broken the law. Nor have they even considered my safety. If the slippy and can’t get up. I then have to put myself at risk and turn the shower off without the safety net of a workers assistance to correct my balance.  Than the need to explain why we both got hurt and then they can’t claim work cover.

No life isn’t all about us, we don’t get to carry the hedge trimmer into the hedge maze in the event we can’t find our way out the hedged. We too must follow the policies and procedures we are required to work within. Just like my siblings and I checking we stayed with in the boundaries of the maze puzzles growing so too checks are made to ensure polices are ahead too, as we navigate the mazes in our lives.

We can’t back track in life’s maze. If we fall its too late to put our shoes hack on and we’ve may be off work without an income. But it’s your maze and I can only direct you like me have a right too choice. 

When The Penny Drops

When the penny drops!

A penny for your thoughts . . . There are times in our lives when we all want and need advice, when we’re not sure whether to keep walking straight head or to take the u-turn at the next intersection. Major life choices such as buying a house, publishing a book or a sea change are rarely made independently.

As a Christian I do not believe we were created to live fully independently. Rather we were created to live in relationship with others – interdependence. Others in our lives are placed there specifically to supports us through the narrow valleys, the deepest cannons or conquering the mount tops.  They too are in our lives to share the joys and the celebrations that life commands we celebrate.

 The old saying a penny for your thoughts, is full of wisdom. In the process of making the major choices for my life, I actually will pay a penny or two for expert advice. This is particularly true in providing my health and wellbeing.  Sure I like most people have a GP and she’s great at looking at my overall health care needs or writing a script when I have a chest infection, but the are times my health needs are outside her whelm or expertise and she sends me off to a specialist in that area.

I remember of time when I was consulting with a physiologist about my mobility needs and working on my general fitness, she warning me when I began sharing the goals I was setting with others I was about to be meet with a influcts of people offering advice, and suggestion.  She reminded me it was her I was paying my pennies too, not the neighbour over the back fence. Sure enough he was explaining to me the benefits of his morning power walk and invited me who was using a wheelie walker at the time to join him for his morning power walk.  You’ll be walking without that walker in no time!

A opinion he was entitle to have but I never choose to take him up on his offer.  I was forking out my money to work with the physiologist at the time, I was sticking to her plan.  I must admit to being pretty single minded once my goals are set.  I was do focused I dragged my pool coach in so I could get the two people I invited to assist with my fitness at the time on the same page.  Many workers disagreed with the choices I was making at the time despite me consulting with people who had a little more knowledge then them.

Just as I didn’t give my pennies to me physiologist for a manuscript appraisal or seek art lesions from her. I wasn’t about to take advice of a support work who was changing a specially designed pool  program for me and the areas I wanted work on simple because she had taught learn to swim, the fact that learn to swim wasn’t my goal at the time seemed to escape her. I don’t choose to go to the vet if I can’t get an appointment with my doctor.  If I am forking out my pennies I figure I should follow the advice being offered and that’s my choice.

However our human nature is to put our two cents in whether’s its asked for or not!  All of us think we have advice and guidance to others. The very fact that I write this blog is testimony that I too have my two cents too have to others. I need to confess there are times, many times I offer my two cents, when I am perhaps not qualified to do so. Just as there are times I don’t follow my doctors advice especial when she said to get some rest. Not all my pennies are wisely spent.

When I was choosing the topic for today’s blog post I was actually really excited, because I often don’t have a lot of interaction with my readers and wonder at times if my carefully chosen words other wise known as my personal two cents worth. After all what I am sharing here are not merely the facts but my opinions based on my experiences. Not everything I am sharing will directly be applicable to your life.  We are all individuals and what works for me not fit for you and your lifestyle.

As I was saying we all like to put our opinions forward but ever now and then we over step the mark and become over zealous with our words of wisdom. At times we are so blind sided that we become so full of hot air the we are not only given someone advice but without realising we takeover taking away another person’s right to choice because what we believe fact. 

Some people think I am wasting my time in writing thus series on choice, Debbie some people are just never going to get it and if you keep letting them into your home there just going to keep walking all over you.  Of course their right, as I shared on Wednesday we  all know people who seem to have all the answers.  They don’t get how intrusive the actions are even though in the main the intentions are well meaning.

However every now and then the penny does drop and a person realises then been try to buy us with far more than a two cents we generally allow people to invest in our lives. Yesterday someone significant in my life realised she was wanting two dollars worth of in put. She had based her opinions of what was needed on her own values and how she view things based on her own needs. One size does not fit all and my neighbour as a larger lady would be the first to admit that.

She being the caring soul that she said had set about to correcting my lack of privacy because my kitchen curtains were to short. People could see in and she perceived I was a risk and was about to jump in feet first to rescue me. I am after al a young single lady with a disability living on my own. Surely it was a fact that short kitchen windows put me in danger.

It wasn’t until I sheepishly confessed I was worried I might not like her choice in curtains, that she offered to take me shopping to pick them out that after some more fishing she exclaimed, Dear it’s your house and your choice I sense you are happy with what you have. (for me the issue was being able to see out.  As a result of this choice I don’t walk around my house with nothing on).

When the penny dropped my poor neighbour was horrified the she like some many people was prepared to waltz into my home and take over.  I know it not an excuse Debbie but I care so very much for you. I nodded as I knew her heart was a care heart and I reassured her, there be plenty of other ways she can help me in the meantime come down for coffee and check some of my latest artwork.

My neighbour was the last person I expected to let her pennies drop into the piggy bank.  She is not one to hold back with her opinions, advice and lectures. So I am beaming with excitement to know every now and then for someone the penny will drop.  Making this exercise worth it! 

Is the sky blue?

Of course well all have people is our lives who are opinionated and love an argument for argument sake. I believes there are times when I am being supported by a support and the lack of respect for client choice has to nothing do with me having a disability or even  me!  The support worker may choose to have the very same argument with their own mother.  Sometimes even the topic of discussion is irreverent and we may be arguing over the ‘sky being blue’.

Roses are red!

Violates are blue!

Sugar is sweet!

And so are you!

Fact or fiction- it is true that some roses are red! But these are in the minority.  If I have a red rose in my hand then you could argue that that ‘rose is red’, but if was stand holding a blue rose blue rose in my hand . . . then reciting these very famous lines, may sound like fiction.

The types of workers will stand asking for justification for a choice I make and even when I deliver a reasonable defence for my choice they will continue to argue the point, just to be right and almost like score points.

I wonder if these people see life as so black and white they would argue that the sky is blue.  Debbie, I simply stating a fact that the sky is blue and on that particular day the sky might reflect a picture card blue sky, like just as I am standing and holding at red rose.  At that time the person may simply be stating a fact.

But to play devil’s advocate I going to argue the statement that the sky is blue is an opinion. The blue colour we can both see at the moment in time is a reflection as a result of weather condition. The sky actually appears many different colours, depending on the weather and time of day.  It may appear grey or even green is there’s a storm on the horizon, and the a whole mirror of different colours at sunrise and sunset. 

Yet for some reason there are people who would want to argue over whether or not the sky is blue.  Being a phalmatic person at the end of the day argument  the worker will get one of two reactions whatever (like real at the end  of the day who cares!) or I will blow a raspberry. Depending if I am in a childish or adolesces like mood.

To me some battles like arguing the appearance of colour of the sky is a mere reflection of atmospheric conditions is  not worth picking a fight over.  Been there! Done that! . . . And decided it’s a waste of energy and support time.

Like the time I was in Crazy Clarks (one of those $2 shops) I found myself needing to justify to my support worker a $2 purchase as if it was a major purchase in my life and the defence I presented was deemed weak.  Needless to say we never had that type of argument or any argument again.  I made the purchase or one pink folder and one purple folder and left at the end the day if I was even being challenged by a worker over the right to buy 2 purple folders valued at $2 each. That support worker was never going to understand client choice and I asked for the worker to be removed from my roster. Some people will argue of every little thing.  Whatever . . . I haven’t got that time to waste when I have 4 hrs support per week.

The commanding officer doesn’t choose to fight diversion, unless of course the form part of his battle plans. Arguing over the colour of folder on that day was not as import of the taste and the aroma a purchase of a coffee was about to bring.  The colour of the folder was an unnecessary diversion in my day.

On that note I am yet to find a support worker who has argued with me over a request to stop and have a coffee, often rather choosing to indulge in a coffee with me. Which is a good thing, when you choose to be a coffee addict.

Just do me a favour next time you feel like arguing over the colour of the sky or a folder let me know so I can go hide out in a coffee shop instead!

Lifestyle Chocolates

Choosing your chocolate

Lifestyle choices and the big 3!

Diet, exercise (movement) and lifestyle balance

There are times in our lives when making choices requires a real balancing act.  This is certainly true is my major lifestyles choices relating to my health and wellbeing.  Areas around diet, exercise and lifestyle balances.  We all are forced to make choices in these areas I guess some of us are more deliberately in making those choices.

Like all choices what we eat, when we eat, and how we eat has conquences,  whether we choose to eat randomly what we feel like eating when we feel like eating or we chose to follow the latest fad diet.  “we are in the main what we eat and how much we eat of it.”

As a person living with major mobility challenges, what I choose to eat is central to my overall wellbeing.  In addition to my challenges with mobility and how those change as I age, I have a number of other chronic health issues to consider when deciding what my weekly food intake might look like.

Like many people approaching middle age my weight has become an issue and the battle of the bugle in earnest.  It just the size or appearance of the bugle that differs for each of us. So for me I have decided the appearance of my bugle, at my age, for me weight give my ongoing mobility issues and associated impact on my health is ‘of concern’.  Others in my position may not share this concern, but I have chosen it to be an issue.

Just as I shared a few days a go someone else around my age might chose to go to the gym everyday before or after work, in the main controlling my food intake is how I tackle my weight use.  For me this isn’t a magic number when I stand on the scales, but my waste line.  Exactly hard are my jeans becoming to do up in the morning.  Of course I could choose to keep buying a larger size.  However for every centimetre my wrist line grows the harder it is to tie-up my shoes,  (yes! Although it is a struggle it is still important to me). Walking, transferring and getting in and go out the car.

Even though I can still walk due to fatigue and pain levels in the main I choose to use my electric power wheelchair while carrying out my daily lifestyle activities. Although many disagree with my choice to use my chair at home, I believe the energy I save allows my to continue to live independently and work form home.

Just as some don’t agree with my mobility choice many can not understand my choice to work and interact in the community despite the many challenges my disability bring to my daily life.  My choices to choose to use a wheelchair even though with difficulty I can still walk, like any lifestyle choice comes with some risks and high emotional costs. 

A daily struggle is to find a balance in my activity level and many days, due to fatigue, pain levels and allergies I seem to get it wrong.  While I struggle to balance out my lifestyle and the activities Associated with those choice life never seems to pan out the way we planned or hope.

In achieving my lifestyle balance I choose to make deliberate choices to ‘move’  rather than a exercise routine such as going to the gym. My ‘movement’ philopchies may be the equalivant of someone without a disability choosing to take the stairs instead of the lift. So choosing tie my own shoe laces rather than asking my support worker is a deliberate choice in movement, umm! Now to convince them to let me dress myself.  That is not their job to dress me, but enable me to live an independent lifestyle.  Oh that would be dependant on them reading my individualised support plan wouldn’t it?

In the same way I can my TV channel the old fashion way.  Without the remote control that some people seem to have glued to there hands.  An able body person my chose a deliberate movement plan by making 10 000 steps a day.  I do not subscribe to any one size fits all approach to anything involving a healthily lifestyle balance. As we are all individuals we need to choose or not choose the right lifestyle choices for ourselves. Someone choosing only to eat Macers still involves choices, even though for most of us it seems to be a lazy choice.

In the same way to use my wheelchair at home will seem a lazy choice. In making my choice I am aware that that will result in muscle waste.  While you can see the impact on my arms and legs you can not see its impact on my heart, lung and bowel. The health of these organs more import to me than continuing to walk is pain.  To exercise these muscles I have a specialized program.  But because I not out power walking the streets at 5 am in the morning  some people will view me as lazy and that’s their choice too make.

To counteract my choice to mobilized in my wheelchair a diet high in fibre and low in fat is important to me.  So you won’t find to many packet of biscuit or cakes being baked in my house.  The chocolates I choose are full of Spanish, carrots, celery, bananas, and strawberry centres and probable made on carrtoine rather than coca. Just don’t deny me my cup of coffee!

So my guess is when you open the chocolate box your selections will look very differ to mine.  I just glad these lots of options in the box to chose from

   

On Second thought

Honestly I didn’t mean to sound rude,

There seems be many people telling me what to do,

Only one Indianan with so many chiefs,

The sudden invasion is wearing me beyond belief.

It’s not that I don’t appreciate you help,

For I know that there’s many things I can’t do myself,

It’s not really the fact you’re touching my things,

Rather the method and madness your help brings.

It’s lack of respect that you often show,

As you tidy my table and put away my dough,

The way you toss things about show you don’t care,

That hurts my feelings and causes despair.

They may look like simply only pencils to you,

And old Crayons with some chalk in there too,

But as you standing there tossing them in a box,

There usefulness and value are about to be lost.

You see these are the tools of my trade,

Each pencil has a place where in needs to be laid,

The don’t take kindly to being just toss about,

There life is soon shorten with each shattering  bounce.

Just as oils aren’t oils, my pastels are just pastels,

They now come in pencils, oils and chalks,

Though they many look at like they don’t get along,

My oil pastels cause my chalks pastels to decay.

The pictures you stack are ooee and gluey

And once they are set you’ve created a glue,

I hust look with them with a tear in my eye,

Hours of work I place in the bin to say good bye.

So I mean no disrespect for your help you see,

My requests come both with rhyme and reason,  

When  you act in such disrespectful ways,

Sometimes don’t touch is easier to say.

My life as a artist may seem different to yours,

I don’t quite understand the distress my mess seems to cause,

Nor your insistence my house should look like yours,

So I ask as you touch my artwork be aware the damage you could cause.

Debbie Chilton © Copyright 2013

Let's talk choice!

Over the last few days I've been sharing a lot about me feelings around lack of true choice in my life and how others in my life may respect or disrespect these choices. And ultimately that is their choice. 

However because I have CP and epilepsy legally the law said for my safety and the safety of others I must be seizure free for two years before I can drive.  At this point some of my friends are horrified that the thought of driving would enter my head.

Sorry to disappoint you guys but as I close my eyes at night my dreams are filled with jumping in a car, usually and certain old blue ford once owned by a friend for some strange reason that continuously mystifies me. 

I reason the psychological makings of my mind are forever frustrate my the lack of freedom and often feeling the lack of freedom to make my own choices about the simplest things like how I want my toast cooked and the right not to have butter or margarine under my cheese, or 'fat on fat', as I tell support workers.

Legally I am forbidden from taking the keys of my parents car and driving it to the Gold Coast. That is of course assuming in backing it out the drive way, I didn't let go of the brake and loss control landing in the front door of the nieghbouries across the road or was pulled up by the first police car I pass and taking into custody for driving with out a licensed.  I think we can all think of worst sernioes  so will stop this dream right here.

As I do make a choice to obey, the laws determined by the various levels of the governments in Australia and thus far have little experience of the justice system.  As I been endeavoring to illustrated over the last few days, our choices large or small have conquencies, whether I make them or the Prime Minister makes them on our behalf. Whatever we choose we must the live with the result of those choices.

Our nightly news headlines are filled with examples of the results of some of the choices people make. Sadly in making these choices, the lives of others are tragically impacted with devastating results. Often as was the case in Boston this week these stories are the result of an individuals choice to not act within the laws of their country for reasons you and I will never comprehend.

However not all the stories that make the nightly news bulletins are the result of criminal acts or wrong doing. Sadly even the right choices or the choices we make that are lawful can meet with tragedy. There are times we choose to fly to our holiday destinations and for reasons beyond out human comprehensions the plane crashes and we lose love ones forever.

When trying to explain my right to choice to new support workers I often use the illustrations involving of the family or company car. 

My game begins something like this . . .

'Did you drive to work today?'

Confused they answer of course I did!' looking at me very strangely. What can driving to work have to do with making choices. 'Am I driving you to Woolies today?'

'Yes you are I am choosing to do my shopping at Woolworth today. However my question is did you choose to drive to work today?'

'Yes I did, I knew you were planning to go shopping at Woolies today.'

'I know last night we decided to do the shopping today. But you still made THE CHOICE to drive to work, as you left the house this morning.

At this point the worker is starting to get frustrated and Debbie you're point being? and then the defense, 'Well how else was I going to get to work and take you shopping?  What other choice did I have?

The worker here has a valid point.  There are no buses or trains that run directly to my house, the office or her next client.  In our daily lives we often feel we make the only choice we can at that time. In the same way my worker feels it it her only choice to drive to work, I too feel my only transport choice is a maxi taxi and allowing for incredible waiting delays.  We all feel there are times in our lives when we make the best choices we can under the cirmustances. However even when we feel we are making the only choice we can, our choices are choices all the same.

My support worker could of chosen not to come to work, and making that choice results in the conquences of loss of income for her and might mean the is no other support workers able to take me shopping that day.  Hardly decisions that are going to change the world, but choices with results all the same.

So on this particular day, my support worker, indeed chose to drive to work so I could do my shopping at Woolworth. Having now establish the support worker chose to drive to work that morning, I play devil's advocate.

'Where do more fatalities occur than anywhere else?

She replies, 'close to home'

'While driving on the road?' I ask.

'Yes, and you're point is?, looking at me somewhat down funded again.  

'You made the choice to drive to work today knowing there was a potential to have a car accident and having acknowledge knowing the risks, you and I are about to choice to take that same risk to drive to Woolworth in order to do my shopping.'

'Yes' and sometimes the penny drops and sometimes it doesn't. Life requires us to make choice to get out of bed in morning or to roll over and turn the alarm clock off.  Sure we might not have a job the next day if we make that choice, but while we choose to continue to live (because others have made a choice not to live.) we are forced to make a series of choices that will impact our lives and the lives of those around. 

We do not get to control life.  The results of our choices are not always what we expect and at times when our love ones are taken from us in car accidents we don't like the results.  Yet in the main most of us chose to drive or be a passenger in a car with the full knowledge of the results no being what we anticipate at the end of the day. 

As Forest Junck said, "Life is like a box of chocolates!"  We can chose the chocolate we want from the box but we don't always like the centers inside.

While my epilepsy makes illegal for me to drive a car.  There is nothing illegal about choosing to live alone. Yet often that decision meets with the same reaction.  Its too dangerous for you to live on my own. I like millions of people on this planet make a choice based on a calculated risk that an injury or death may result if I have a seizure.  I have made a choice not to break the law and drive a car and I have made a choice to live on own. 

The conquenices of both choices is potentially fatal. However statistics tell us I am more likely to die as a result of my decision to be a passenger in a car, than a seizure in my own home. Yet only the second of these two choices is faced with opposition.

Yes!  Life is like a box of chocolates often we don't like the taste as we bite inside and then its too late. As I am about to make my next selection, I take a calculated risk that you and I may not like  the taste inside. But I am going to take a bite anyway on the off chance I might really enjoy it.

Let me know if you like to chose your own chocolate or you want me to choose for you?  

  

Chasing Bees

"Have you seen it?"

"I mean the bee that seems to be trapped in this continuous cycle around my head? Bloody annoying thing that won't bugger off! Is it worth chasing the bees or should I give up and take up bee keeping and collect the honey instead?"

As a client of any agency that provides me with support, I have a care plan.  Each care plan is individualize to my specific needs. I am blessed to have a community link officer and service coordinators that recognized my abilities and encourage my autonomy in writing my own support goals and care plans.

Some even joke, you're the writer so write your own support plan. To which I respond, trying to get out for work again!  You like this deal, its one less plan to write."

Then we burst into laughter and I write my own support plan.  Many old school paid careers and support workers get the nose out of joint because this not your job and what right do I have to decide my own support needs. That's what case management is for.  

The are in tithers that I be allowed to case manage my own affairs. The fact I don even have a case manager or social worker, because I do need one is not know to them.  Theses workers have a one-size fits all approach to supporting people with disabilities.  Which is what I label, a medical approach to providing support.  Sadly I have even been referred to as a patient!

As I said yesterday all too often, the support workers who take this approach are myself appointed supper-heroes here to rescue me from all harm, despite and care plan that has been activated by a support agency. Paperwork is viewed as nothing more than red-taped produce by the Department of Communities.  The careful individualization planing support goals and meeting unique needs is simply dismissed as erotic by the department to keep the powers of bee happy.

Once these types of workers enter my home, the bees swam and take control as my support and care plans are tossed  by my personal saviours in the bin, unread being judged as irrelevant to my needs. The bees, the bees! I cry, why don't they too see the bees that gather in my home.

The breed of bees today are called medications. The concept or notion that medications are legally required come into play and my saviours at simple a law in enforcement agency to administered my sentence imposed by a judge known as my GP. 

A judge the many workers view as incorrect and far too progressive in her approach to my health care.  How dare a doctor offered medication advice, options and choice.  What happen to the good old days when medication were simply prescribed.  You don't mean to say, like people with disabilities patients too have a right to choice and doctors are not longer dictators the were once viewed as.

As I said yesterday our choices have conqurences, giving people with disabilities real autonomy runs the risk of clients or patients making bad choices.  Like many everyday make the choice to take up smoking.  When are these self appointed saviours now.  Look, here these people are about to caused the own early deaths any your worried if I have a seizure if I don't take my medication? Come on don't just let the bees into my home, share them with the smokers too.

Ooops! I forgot you're one of the smokers, who has a right too choice because you don't have a disability.

The question remains to chase bees or take up bee keeping? Let me know what you think.

Forced Apologies Made By Debbie

The line of defence

As I begun to write my post today I looked up the word “justification”, thinking the meaning would be to give reason or explanation for an act or decision. I found that the word “apology” is a synonym for word “justification”.  This to me implies a decision or choice ‘is’ incorrect unless I can produce fact or reason for the choices I make.

Our daily lives are full with choices, in fact I often joke how boring life would be if we all make the same choices. Our choices are what make us individual and unique. In many ways our lives are driven by choice.

When my alarm goes off at 6:30 in the morning I am forced to make my first choice of the day.  I can chose to hit the snooze button and roll over for another 10 minutes until my alarm again reminds me that I planned to get up and start my day at this time, I chose what time I wanted to be up or acknowledge the choice I made the night before and get up.  Often this decision is driven by the powerful image of a mug of hot coffee and memory of its smell. I like to have my first cup of coffee of the day alone before my home is invaded by the necessary presence of a support worker.

I could however choose not to set my alarm and not to get to until my support worker knocks at my door and their are days when for reasons known only to me I make that choice to forgo the aroma of that first cup of coffee and to catch the news headlines before I rise and shine.  The odd support worker has threaten to throw stones at my window, but as yet none of them have chosen that option.

In the main that is because I am motivated to get up for a hot shower, especially on a cold winters morning.  I may choose a long hot shower over the waking thought of the aroma of my cup of coffee. Our choices are driven by our motivation, some of these at rational, others may be irrational or selfish. As we make daily choices however small they are: like to sleep in our choices will have conqueneces .  The result of my not setting my alarm is the lost of a few precious monuments in the morning to gather my thoughts, catch the news headlines or reflect and pray.

Few people in my life question these few choices I make as I start my day even if it is different to theirs.  Others many choose to start the day with water to detox and a dash to the gym. Just as they respect my choice for a coffee, I too respect the choice to care for their bodies.

Our choices can at times impact the lives of those around us.  Living a alone these early morning choices do not affect others.  But then sooner or later that knock on the door comes and if I chose to open the door, then my choices begin to affect others.

The front door opens and so my choices enter the view of those who I share my existence with on this plant.  If I chosen to strip my cloths off as I make my way down the bedroom the night before and wheel over them in the morning in the desperate quest for the first cup of coffee before that intruding knock comes and others invade my home and space, then they too are forced to step over my cloths and find where I am hiding, which is usually laughing with the Sunrise gang and JT’s latest prank, unless of course I have chosen not to get up and I decide to ask for a cup of coffee.

Unless I have a very understanding worker or I very unwell, the coffee is place on the table and those items of clothing the worker was forced to step over are gathered up and place in the wash and my supper dishes are cleared away.

The worker may chose to have a dig at me . . . What time did you boyfriend leave last night or was it at 10 to seven this morning? So its 7:15 and the please explain questions start.  For the next few hours there is no privacy and I may be asked to defend choices I make. Usually it’s about my decision about whether or not I want breakfast and the answer ‘nothing’ or ‘coffee’ meet with a disappointing look or a growl. You should eat breakfast . . . You have tablets to take . . . You’ll feel better if you eat. How about toast?

Hang on what happen to client choice? That is usually meet with the I have a duty of care line and if you have a seizure I will ‘feel’ responsible!

The defence that thousands of people have made or are about to make the very same choice in not accepted as justification and the fact the have just had a ice coffee  for breakfast escapes them. Because a support work perceives they are responsible for my welfare in this area, I become defenceless and not justification for my decision exists and a your right apology is usually forthcoming and before 7:30 am the first line of defence is crossed and my daily battle to defend my home and lifestyle begins.  The first of my self appointed saviours for the day has arrived to rescue from the process of self destruction all because I made a decision that it had become safer to have someone supervise my show in case I fall or have a seizure.

It is then that the true invasion begins and most staff insist it is their job to was, dry and dress me even though I perfectly capable of doing it myself again the fact that there’s documentation to support my defence is tossed of court, because that’s how they do personal care and that’s their definition and I am left with the choice to remain defensive or apologize for my quest of choice and right to independence. Which to many in the disability support system is a crime within itself.

Before 8 am the need to mount defence seems futile battle fatigue begin and then their shift ends and I left to fend unprotected until evening shift begins at 5pm and I am meet with disapproval as I am covered and paint or pastels and I committed my daily crime of using the living room as an art studio and the crime sense remains.  Having no recourse or opportunity for reasoning it is thrown it to boxes and pack neatly away.  The table is polish and a fresh table cloth applied so we can play ladies and have a coffee together.

I shake my head, why can’t I get paid to drink someone else coffee. Instead I am left labelled disable without the right to defence and a forced apology is followed. Of course you can drink my coffee not defence needed here!

.