March 26 is Purple Day

Art for a Cause
THIS PAINTING IS NOT FOR SALE 

Purple Day or International Epilepsy Awareness Day was founded in 2008  by then 9 year Cassidy  Megan. She has a simple message to help her school friend understand Epilepsy. "People with Epilepsy (or seizure disorders) are everyday people living ordinary lives." 

Epilepsy is one of the world's most common disorders, yet it is still widely misunderstood. Many people in the community do not understand what epilepsy is and what to do if someone is having a seizure.

Website 

Last year was the first year I was involve in purple Day and I learnt so much, though I myself have had a seizure disorder for more than a decade.  Did you know there are over 40 different types of seizure disorders.  While an epileptic seizure and its after effects can be debilitating for days, other seizures can be quiet mild lasting  only seconds and you and the person  may not even know that the patient has suffered a seizure.   

Other patients suffer from Chronic Toxinic Seizures that can last anywhere form a few seconds to hours. It is these types of seizures that need you to provide immediate first-aid and CALL 000 for medical assistance. While many misconceptions in the community exist around first-aid for a person having a seizure it is better you give some assistance rather than walk away leaving someone vulnerable to injury or mistreatment.  The very least you should do of someone in this situation is call 000 and describe as best you can what you are seeing, the operator can then direct and guide you to provide fist aide.

But here's a few do not's to help prevent injury to the person:-

Recovery Position

1. Do not restrict a patients movement - If a patient stiffens then any restriction can cause injury.
2. Do not put anything in the patient month. Patients swallowing their tongue is a myth.  Placing objects in the month can become a chocking hazard, and make breathing difficult.  Many patients suffering a grand mal seizure already have compromised airways.
3. Do not attempt to move the patient. Unless the patient is in immediate danger of falling. If possible it is better to remove obstacles away from the person.  If possible put the patient on their side.

 For specific information visit Download the First-Aid Fact Sheet . In many about 60% of case a patient seizures can be fully controlled with medications and the person can live a fully active life in the community.

Famous Australians living with Epilepsy include Wally Lewis channel nine news presenter and former Captain of the Queensland Rubgy League Team and Dr John Darcy, general medical practitioner and medical constant. Both Australians living in the public spot light despite their medical conditions.  

On March 26 2013 I will be auctioning a purple "butterfly painting"
(yet to be painted but a sample of my work is above.) The butterfly is symbolic of freedom. We want to see people with seizure disorders living and fully participating in the community without fear of judgement.   This auction for a cause will raise funds for Epilepsy Action Australia.  You can visit their website to make a direct donation or my fundraising page to make a donation to my tally.  I am not receiving any direct donations.  Receipts for donations will be directly emailed to you.

You can follow my fundraising page for all the art auction details and to see updates on my tally.  So stay tuned for the picture I will be auctioning on March 26 and details on how to bid.

Debbie Chilton

(Purple and Proud)  .  

   

NDIS - The Who, The What and The How

The Federal Goverment late last year introduced the NDIS bill to Parliament and the Senate is currently taking submissions on key aspects for the introduction of the NDIS.  Below is a summary of the commission report.  You have just 9 days to have your say.

Read all you can, talk to significant others, ring your local MP and make a submission

   

Understanding the Draft Productivity Commission Report into Disability and Care and Support

The Productivity Commission has accepted that the disability system is not meeting the needs of people with a disability, their families and carers or indeed the needs of the  nation and has recommended a complete overhaul. The opening words of the draft report say it all – “the disability support system overall is inequitable, underfunded, fragmented and inefficient and gives people with a disability little choice.”

The Commission is proposing two schemes. The larger National Disability Insurance Scheme  will provide support to approx 360,000 people whose disability has a significant impact on their daily life.

A second smaller scheme -the National Injury Insurance Scheme - would provide support for people who suffer a catastrophic injury and would be based on widening and strengthening existing state-based schemes.

A person getting support from the NDIS would need to have a permanent disability and meet one of the following conditions:

• Have significant limitations in communication, mobility and self care
• Have an intellectual disability
• Have a condition for which early intervention would improve functioning
• Be a person for whom intervention would have significant benefits

The Commission also suggests that the NDIS should have an information and referral function for a much larger group of people with a disability, providing information, referrals and linkages to services and supports outside the NDIS.

Once a person has been deemed eligible and their support needs assessed, they would be entitled to a package of supports and services, which would be portable across Australia  They would be able to either:

• Choose their own service providers
• Ask a disability support organisation to assemble the a package on their behalf
• Cash out parts of their funding allocation and direct the funding to services they believe best meet their needs.

The list of supports the NDIS would provide include:

• Aids, equipment, home and vehicle modifications   
• Personal care
• Community access – to support community inclusion
• Respite
• Specialist accommodation support
• Domestic assistance
• Transport assistance
• Therapies
• Guide and assistance dogs
• Case management and coordination
• Specialist employment services
• Crisis/emergency support

The Commission calculates that an additional $6.3 billion is needed to fund the new system and suggests that only the Commonweath has a sufficient taxation base to meet the cost of the scheme. The Commission therefore proposes the federal government take over funding the entire disability system. They prefer to see the funds drawn from general revenue rather than a specific tax or levy but recommended the funds not be subject to the annual budgetary process and quarantined for NDIS use only.

The Commission has suggested a pilot project in 2014 in one region in Australia. This would extend to the whole of the country the following year, beginning with all new cases of significant disability and some of the groups most disadvantaged by current arrangements such as adults living with ageing parents and young children requiring early intervention.  The scheme should be fully functional by 2018.

It's You're Life So have Your Say!

TOGETHER BIG THINGS ARE POSSIBLE

Though networking with others Marlena makes her jump!

Leadership is not about me!

Leadership is not about me or my recognition. Leadership is about the network and the team I gathering around me.  It about selecting people like Marlena who I can draw from, be inspired, gain encouragement, confide in, to partnership with.  In the past I would say, there's no I in team! As you probably noticed there is no 'I' in the word leadership either, nor is it possible to be a leader if there's no team,  (formal or informal) to connect to.

One of my passions is to raise community awareness about the achievements of people with disabilities to showcase what is possible when stereotypes are challenged! One reason for this is to provide role models for other people with disabilities.  To challenge them to stretch themselves.  It is not possible to do this on my own, I may be an inspiration to my friends, but there are so many different types of disabilities with varying degrees of severity (which I am still learning about), that I can't be a role model for every person with a disability in Ipswich.  

The other aspect, is we need to promote acceptance in the general community. While transport access, physical access and educational access are all important to address. Our biggest barrier still remain community attitudes based around misconceptions of the true capabilities of people with disabilities whether they are physical, intellectual, behavioural, sensory, communication, or psychological people with disabilities can all participate in the community given the right type of support. Day centres and respite are about the careers needs not about providing activities for people with disabilities. Yes, they have a role to play but they should never become the focus of clients lives. We need to challenge the mindsets of decision makers, business owners and employers in order to create a social inclusive community.   To that needs a whole mob of people not a single leader with a vision. 

We need leaders like Marlena who model determination and courage in the face of opposition and resistance to keep knocking until the doors to access all areas are open.  Just as Marlena's sky diving jump today was not possible with out a network of friends and supports around her, my leadership dreams are impossible until I form a team around me.

We in this together!

Debbie           

The workings of the mind

Of all the organs of the human body the brain and its workings remain somewhat of a mystery.  We can now repair the heart, replace the lungs, reproduction the function of the kidneys, and improve sight through surgery. However the brain still wholes many secrets and we still do not know enough to medical restore function as much as we like.

Recently I broke my hand and needed surgery to repair the damage. In the meantime, the brain had redirected the messages to my hand to hold my index finger in a certain position to protect it from being hurt while the bone regrew. So now I am in the process of retraining my brain to hold my hand in its 'normal' position.

I have long understood that the function of damage cells in the brain can take on by other brain cells. Just like a stroke victim or someone with an acquired brain injury at birth some of the cells of my brain were starve of oxygen and died. This brain injury or damage is known as cerebral palsy. Just like those who acquire a brain injury as an adult, the bodily function we are left with is the area of the brain that losses the least amount of cells.  Loss of function can be experienced anywhere in the body, movement, vision, hearing, balance, and speech.  This type of damage to the cells is quite marked. 

However other types of brain damage occur more slowly and can go undetected for years. Such as that in a person experiencing alcoholism or dementia.  However as my occupational thearpist was explaining yesterday, the brain is under some cirrmstances able to reprogram itself, like the different kinds of messages it now sends my hand.

We are able to assist in the process of retraining the brain to perform other functions if early intervention programs are put in place. 

A physical exercise program can be designed to simulate the area of the brain where oxygen was lost and others cells can take over the messages of dead cells, so we often see people who have had strokes learning to walk and talk again. 

However cells that relay the messages to our limbs are not the only cells that die when a brain injury occurs, whether it be from birth trauma; road accident, stroke, alcoholism or the aging process itself.  Cells that affect learning and memory can also be lost.

When damage occurs in an adult whether through injury or a medical condition it is not assumed that intellectual and memory loss has occurred, until medical tests have confirmed these loses. Just a the cells that control hand function can be retrained, memory function can too be retrained.  

However often when people see a child or an older person like myself with Cerebral Palsy they wonder if there a loss of intellectual function.  We can see the person with a physical loss of function has a loss of brain function that impairs there movement but identifying someone in a crowd with loss of memory function is not so easy.  

In its simplest definition Cerebral Palsy is a physical disability that is the result of brain injury round the time of a child's birth. It's severity an type is determine by the area of the brain in which the injury occurs. The are five main types of Cerebral Palsy as outlined in the diagram below.

 However a person may have one or more types, physical impairment may be accompanied by intellectual impairments of epilepsy but is an exception rather than a rule.  People with CP have range of intellectual abilities which is reflected in the general population and explore a who range of career paths including academics careers. People with CP are only limited by the motor function. Just as people with visual impairments are able to learn with the assistance of brail and special computer soft where. 

So it is a shock to read on u-tube and twitter than a woman with CP is considered 'mental' because she happens to have Cerebral Palsy and no control over her vocal chords. One can only assumed that the person was assuming the journalist also had a degree of 'mental retardation' which only seems to service their own intellectual deficits in terms of their vocabily that they are using terms that are outdated and wrong applied. 

Marlena Katene Journist

Currently the term 'mental' is used in relation to people suffering from mental illness which  is associated with physiological and physiological causes, including brain function impaired by drug use. Here I am tempered to judge the faceless individual who made these irrational judgments, but that only severs to make me as judgmental as the individual concerned. 

Sadly in terms of Disability Awareness and educating people on the distinct differences of the various disabilities is only possible when individuals are prepared to listen and learn and sadly there will always be a certain percentage of the population that are not prepare to listen to the type of logic I have endeavored to present in my post today.  For you my readers I hope the information I have presented has helped increaded your knowledge of the workings of the mind.  

    .  

Life Without Limits!

Dreaming Big Dreams

What do Nick Vujcic,  Marlena May Katene  and Joni Erikson Tada have in common?  They are incredible gifted individuals living life to the full, embracing every opportunity that life presents. Each one has embarked on a quality of leadership the will lead us well into tomorrow.

The fact that each of these three people has a disability does not escape me, as I seek to explore, discover and develop my own leadership style, these are the people I look towards.  For any journey towards geniune leadership is not take alone, but traveled with companions of like minded people. A true leader will surround themselves with other leaders, in the field they wish to work.

Nick Vujcic
"Living life with a purpose!"

 Nick was born with "no arms and no legs." Nick grew up in South East Queensland, but now lives with his beautiful wife in the US. This young couple are now awaiting the birth of their first child.  While Tom Cruise wanted to jump on Oparh's coach, Nick was  happy to give Oparh an arm less hug today.

Nick heads up an International Ministry, traveling the world sharing his stories of being bullied, thinking life would be a whole lot better if he only had arms and legs to keep up with the other kids.  Nick now spends his time speaking to young people telling them, he was wrong and God had much bigger plans for his life.

 From the above picture you woudn't know it but Joni is a quardpeadjic and while on land needs to use a wheelchair for mobility purposes. I first heard Joni's story from my friend Jo Briggs who had become a parpegtic after a horse riding accident. Some time later a shared in my first team role I was interested in becoming a writer. Back then I wanted to write my autobiography. So while I went on to complete my studies in Behavioural Science and further trained as a Christian Youth Worker I read Joni's triliogy of autobiographies.

Joni like my friend Jo acquired a life changing disability in her late teens. Instead of being angry and bitter she used her Christian faith to triumph over adversity. Just like Nick she heads up an International Ministry where as nick inspires young people around the world and has a very strong anti-bulling message. Joni workers with her husband Ken (pictured at the back of the boat) in the disability community.   

Joni and Friends Ministries Family Camps 

In addition to he ministry, and her determination to raise money to purchase wheelchairs so people in third world countries can experience mobility and a full life, Joni is a author, singer and artist. If anyone challenges the limits of her disability and the realm of possibilities this lady does.

Print by Joni Erikenson Tada
Here work can be purchased at
Joni and Friends Store

"Were in this together"

Marlena (in the blue) is no strange to my blog.  It Marlena's and fellow 2012 Leaders for Tomorrow Graduates direct footsteps I am following in. I think in a post last week I used a throw away line, 'The sky is the limit.' Marlena corrected this on facebook today, by reminding up that mans footsteps are on the moon and 'the sky' does not limit us at all.  Marlena in her true leadership style is gather people around her as she continues to build on her leadership.  Currently, she is inviting her facebook friends to write a bucket list with her and she is drawing a circle of people around her to enable her to tick off each item if her list.

On top of her bucket list is . . . a trip to the edge a space, some how though I can't help feeling she will find away to top even that achievement.

To the edge of space and beyond

These are not only leaders in chosen flied but provide witness in my personal quest to challenge and bust the myths that surrounds those of us living with the obstacles of our disabilities. At present Marlena is in a battle to prove herself as a intellectual woman who knows her own mind.  She is the last person who would except tokenism or allow herself to be patronized   Sadly many people refuse to accept that CP is not an intellectual disability. Centuries of carrying this misconception are proving difficult to erode  As Marlena U-tube journalism videos go viral, this wide spread misconception continues to be exposed .

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.