The road to the introduction of NDIS

I don't assume the transition period between now and the introduction of the NDIS or Disability Care Australia will not be an easier one, as the frustration. confusion and desperation all ready shows.  People are still left unsure on the simple issues, Will I be  eligible?

"If I am 62 not, but Disability Care Australia doesn't commence here in Queensland until 2916.  It not fair that because I live in Queensland I will not be eligible. My needs as a person with a disability don't cease when I turn 65!"

A very valid point, after years of  tears, frustration and either no support services or appropriate services to meet their needs only to find the launch date in their state deems them ineligible. The good news on the introduction and trial sites of Disability Care Australia is on July 1 the starers gun will be fired. For those nearing the age of 65 or born just a few year too early to enjoy the security of NDIS the goods news the these people will be carer for by current aged care funding packages.  Currently their are thousands of young people with disabilities either living in aged care facilities or accessing services intended for older Australians.

As the people join Disability Care Australia and they are moved into more aged appropriate support services, nursing homes beds and funding will be freed up for older Australian with disability such as people who have experience stroke.  I agree more funding will be needed as Australia's population ages.  However for now let us celebrate the improvements the introduction of  Disability Care Australia.

As I talk to parents, cares and families of people with disabilities in their forties, I see a glimmer of hope in their eyes, but I and see and hear despair, pain and frustration. 'We need NDIS now! Not in 5 years time. I don't know if I'll still be here caring for my child in five years, what if I haven't got 5 years?What happens to my son or daughter if I die before then?"

Again valid point of reference. These are real people living real  with real needs.  The people I talk to are exhausted with the frustrations of fighting past and current state governments.  They and the love ones the care for still have to some how survive as they continue to meet the care needs of an adult child.  Remember many of theirs older carers currently receive no government funded support at all and rely on the assistance from other family members, friends and volunteers for a few respite care hours a week. In all the exhaustion this brings to their lives, they are left to care for someone with a significant disability, while trying to access whatever support they can in the meantime.  Added to this they must get the head around a new system of care, underpin by a different level of government based on totally different parameters, and new fundamentals.

To these people you might as well be speaking another language. Concept of social inclusion, community participation, support for open employment, an end to underemployment due to disability and alternative accommodation options are as foreign to them, as people with disabilities living with their families was in the 1920's. It just didn't happen!  All people in the late 60's and 70's who care for their adult children with disabilities is isolation and marginalization for them all their have ever known. To imagine a community in which the NDIS is designed to operated in is beyond comprehension.

I was diagnosed with Cerebral Palsy in 1970 at about 2 year of age.  At a time doors were just being opened to the community.  These were cracks and only a chosen few passed under the cracks to be allow out.  At that time very few people with disabilities were living as part of the community.  Even my parent were ask to consider state care for me.

I was the only child with a disability at my primary school, one of two when I commenced high  school, one of about 20 when I completed high school.  My school had a support unit for the hearing impaired, and the second person with a disability to enroll at the Darling Downs Institute for Advance Education and the only student ever to graduate from University/College of Southern Queensland.

Like most of the parents of my friends with disabilities, my own parents are in their late 60's who are not as articulate or socially. I know all to well the struggles these people have had because I have walked their journey with them and seen their pain. I too have my on tales to tell of my battles with the Department of Disabilities Services Queensland.

Until now guarded mistrust was a means of survival, when you hear these people talk and listen to their stories, you'll understand both their tears of hope and frustration. The journey forward for us will not be easy.

The concept behind the National Disability Insurance Scheme is much much more the a change in funding for early intervention programs, equipment funding and meeting the support needs of people with disabilities. Each of us holds different hopes for a future under the watch of disability care. For many whose support needs have remain unmet, it the dream of being able to shower everyday, for others its respite to be able to simply doing the grosery shopping and have a cuppa of coffee known their child is being care for at home.

However the NDIS is designed to revolutionize the way we 'think about disability', many will find these principles confronting and challenging to embrace.  The induction of Disability Care Australia in the main a human rights issue.

"It is the recognition the people with disabilities, their families and those who care for them have the same rights to choice as every other Australian.  The right to live in a type of accommodation of their choosing, the right to live with people the own age in a appropriate setting, the right to chose which town or city the wish to live in. The freedom to be able to move interstate without the fear of losing the support funding that already have. The right to early intervention programs and therapies to ensure they reach their full potential and become full participants in the communities in which they live. The right to access thing like education, sporting, leisure and culture activities and the right to full employment rather the the underemployment we have experienced for many years."

For too long in this country we have played lip service to the inclusion of all people with disabilities in the community. Young people with disabilities living in aged care facilities is a far cry from the type of social inclusion people with disabilities and the families are now demanding.  Disability Care Australia is about empowering people with disabilities to have self-determination over their own future.

Yes it is hoped in Queensland that about double the number of people currently receiving support will be  able to receive assistance for the first time. However Disability Care Australia will see major changes on how funding is allocated in many regions across the country. The major change is a specific dollar amount will be attached to an individual's name and that funding must be spent on them.  However some will be surprised than their be no money going into personal bank accounts.  All money must be held in 'trust' by a host provider of an individuals choice.  The money must be spent to help the person with a disability achieve there nominated goals registered with Disability Care Australia.

So some of the fears in remote indigenous communities about people having to sharing their funding with their mob are unfounded.  This is not another welfare payment.  The whole system of the new look disability care  system is to fully engage people in their community and that includes for the majority full employment for the first time.

In order to fully implement the purpose change campaign for under the NDIS the federal government and the wider community must introduce reforms to the education system and housing, transport infrastructure in terms of disability access needs to be urgently address and does public access to building particularity in areas with high employment opportunities for people with disabilities.

I think their are pockets in the community the believe the NDIS is merely a funding shift.  A restructure in funding arrangement between the state and federal governments can not alone create the social changes that are needed to bring about the reforms now legislated.

For the under 40's the reforms perhaps hold the greatest potential for future possibilities.  It is in exploring possibilities that maybe achievable under NDIS that we as a community must now grapple with.  We come from a long history in Australia of a culture that undervalues abilities and achievement of those with disabilities. We have failed despite all the erotic to achieve full equality.

We continue to underestimate the potential for people with disabilities.  When I hear comments from my own support workers about the quality of my work and professionalism.  I think, to myself, what do you expect from a professional?  People do not employ project officers who can not operate professionally and I am in a federal government leadership training program.

Sadly some support workers still see their roles as keeping clients company and entertain, which is carry forwards for the days when support was primarily given for respite care purposes. Today support is about supporting people to achieve their nominated goals.  The goal of my support in the eyes of some workers s to have fun.  Only a few understand the full community engagement I am seeking.  I do not want to be taken to a movie or go out to play the pokies.

There is nothing wrong with these activities their just things I do with my family and friends.  I refuse to pay out if my support funds things I can either do with others or  alone.  My support needs in community access are know their someone with me if I have a seizure and carry things I can't.  This transition seems hard for workers to comprehend when traditionally people with disabilities have been isolated from the communities and support staff are the only people in their clients lives.

I have worked hard to crave out a lifestyle of independence and I celebrate the introduction of disability care and the empowerment it will given me to live, work and grow independently for as long as I can.

However the mindset of what people with disabilities should do, who the chose to hang out, how they form relationships and types of activities the will chose will be greatly challenged by the NDIS.  When we see people with mild intellectual disabilities are now undertaking university studies, those who have supported people with disabilities for many years will feel this shift in types of support services the most.

These workers are no different than other members of community and even parent of people with physical, intellectual and behavioural disabilities I currently work with.

People with disabilities want to be with their friends from school why can the remain a community.  

For some this is what the want and enjoy and the introduction of Disability Care Australia should not take this from them.  However, I challenge how this is attitude from support people in young people lives follows a social inclusive society model.  Sure I see my school friends from time to time.  However when I went off to university our lives took different directions. Today my friends are either people I work or attend church with. Unless a person needs full time supervision provided by supported employment and/or day respite centers, the should not be in my view segregated or set apart from the community  Assimilation in to the workforce and community is a natural progression we all experience upon leaving school. It is assistance in making choices around these lifestyle goals that NDIS seeks to promote.

So when I hear statements like these being made by teachers and teacher-aids in "special education" classrooms I shutter.  I wonder whose "choices" we are really discussing. Are we willing to really let going and let individuals make their own choices, like every other member of the community.  To give people the real power of choice me need to let go and accept they will make very different choices to ones we would make for them.  Some may be wrong  and the consequences painful.

 we do not make choice for our other adult children who are leaving school. Some will chose to drink or smoke and some stupidly will drink and drive.  We might like to control or kids more, but we re frame as the find their own way and make their own choices.

Here many tell me I am wrong and my right to choices goes to far. We have a soical duty to   protect those with disabilities.  I continue to strongly voice this opinion  to give people real choices for their lives we must be prepared to wittiness the ban in order to wittiness who some young people with disabilities will shine.

Yes I think the introduction of disability care will challenge many. The road to NDIS is rocky, challenging and scary. But if we chose to be grown-ups and embrace the journey together the destination will be worth it!

ArtISability Pilot Program

ArtISability is a Professional Development Visual Arts Program

I have designed for Artists with disability. 

Artist's with disabilities face additional challengers as a result of their limitations. Artist may apply to join our program if they have a physical, intellectual, sensory, learning, behavioural, neurological disability and/or mental illness and they need support to join the mainstream arts community. 

Some of the obstacles there artist may face are physical access to buildings where mainstream artist meet, public art galleries, educational and training opportunities, and  transporting their work. Artist may struggle with written or verbal communication or require learning supports to complete training to further develop and refine their visual arts skills.

Mental illness and Behavioural disabilities bring challenges that dispute their daily routines.  Periods of depression, anxiety and isolation make continuity in their art practice hard to maintain and forming professional relationships difficult. As an artist presentation and self marketing is essential.

Most artist I know struggle with their self-image and self-worth.  Producing our artworks is like giving birth.  To criticize our work is to criticize our inner being.  Yet to achieve and make a living we must expose ourselves to the critics.

However none of these challengers are a difficult to overcome as our task of public education and overriding negative energy and attitudes towards us and our craft.  Life as an artist is isolating, so too can be living with disability.  We we don't isolate ourselves the attitudes of others based on misinformation and misunderstanding can isolated us.

ArtISability seek to provide artist with disability professional development opportunities through removing the costs of being supported to undertake a three day training opportunity, and link them to the local art's community. 

Our 2013 pilot visual art retreat program will be hosted at the Metro International Hotel in Ipswich CBD from the 4th to 6th October for Ipswich Residents Only, 

If you or someone you know
would like to know more about our program

you can email me for an 

application pack.  

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.  

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