2019 World CP Day 'An Ordinary Life'

WORLD CP DAY OCTOBER 6TH

Like so many disabilities Cerebral Palsy is misunderstood.  The movements of someone with CP are consistent with someone who suffers a brain injury or stroke.  These impairments are a result of damage to the brain due to loss of oxygen.  CP is a lifelong disability, marked by loss of brain function in the early years. 

It may surprise you that Cerebral Palsy is a physical disability that in a small percentage of individuals is accompanied by an intellectual impairment.  CP covers a wide range of loss in body functions, and thus the appearance of individuals is determined by which area of the brain cell function is lost. 

I AM 1 IN 1 BILLION

World CP Day seeks to build community knowledge on the true facts around one of the worlds most common disabilities.  I AM ONE IN 1 BILLION people who are diagnosed with CP.  But I am so much more than my diagnoses.  Loss in brain function can affect the entire body or be restricted to one side of the body; or the upper or lower body.

I am a quadriplegic with some loss in function to all areas of my body and my speech is also impaired, fortunately my hearing, sight and intellectual function escaped impairment.  World CP Day is marked by individuals and families sharing their individual journeys and then connecting on social media to give the world a better picture of CP. On October 6 I will be in IPSWICH, QUEENSLAND, AUSTRALIA and this in my story.   

I AM HERE AND THIS IS MY STORY

DEBBIE CHILTON

ARTISTS, POET AND WRITER

IPSWICH, QUEENSAND, AUSTRALIA

In so many ways I live an ordinary life, yet it is also extraordinary.  From the age of eight I attended a local school and went on to graduate from university. After that I worked as a youth worker, until illness interrupted my life.  Prior to this I would say I was aware of my disability, but it didn’t impact my life.  Uni life had somewhat separated from society and I was just another student on campus. Living, partying and sometimes studying, thus was my ordinary life. 

What I refer to as my extraordinary life began when I commenced publishing my poetry and was a freelance writer for a Sydney based publishing company. During this period, I was involved in church ministry and the Ipswich Poetry Feast, and other committees.  At this time my disability appeared to be ‘a problem’. As an accomplished public speaker, I was taken back when people started to raise opposition to me speaking in public and suggested that it wasn’t appropriate. 

The consensus was that the pearls of wisdom in my written work, were lost when I spoke them.  For me this was a societal problem not my disability.   My speech is no different to struggling to speak to someone for whom English is the second language, as a society we have lost patience with others and everyone is in a hurry to be somewhere, including me.  I was myself confused and confronted by a disability I have lived with for 35 years.  

After self-publishing a children’s book, a life of book launches, festivals and workshop presentations terrified me.  By then I also had a seizures due to a brain tumor. Even for me climbing the hurdles of my disability and writing was not worth the rewards.  Somehow publishing a book that flopped ticked for me that bucket list item.  Yet I have half-a-dozen incomplete manuscripts sitting in the bottom drawer.  Well .  .  .   Never say never! 

For many years I worked unpaid in the disability sector, in Australia people with disabilities face discrimination in employment.  While I understand my own predicament (living with uncontrolled seizures), I don’t understand the lack of willingness of employers to employ people with disabilities.  I am extraordinary in relation to accepting work without payment, and a community you will never value my training, skills or experience. 

Transformations Art Exhibition 

Gresser Gallery Brisbane

Opening Night

In 2013 I discovered my true passion as an artist.  ‘Let me talk art . . .’ people said I would come alive. It never occurred to my support service to usher me into a support art studio.  They fully encouraged me to work as an independent artist.  Naturally there was opposition and protest I could not compete against able bodied peers.  I am extraordinary as I backed my ability to be a professional artist and found when my work was presented with other professionals some people chose to buy my work. 

I will never make a living selling artwork, but I have found myself and my community, in which I am a peer and very much a leader. I now live in a community that values my life experience and skills.  I am now being paid when I am engaged as an arts community leader. I would like to think I am extraordinary because of my resilience and determination to live the lifestyle of my artistic peers. 

We do not get to choose the cards we are dealt, only how we play them.

I hope I am playing extraordinarily well.

A lesson in empowerment

Many people in the disability sector are still struggling with what it means for participants to have choice and control over their supports. Our natural instinct, especially women to protect those we see as vulnerable.  While a percentage of participants will remain in that boat, the NDIS changes the game and the role of support staff has shifted to the right.  

The NDIS should be empowering all Australians with disabilities, together with family members and informal supports to make informed decisions, not just those who are able to navigate the complex NDIS system.  People regardless of their 'perceived abilities' should have a choice over `how they spend their days?'.  

Even knowing I am a highly intelligent, independent women some service providers and support workers, assume they know what I need, better than myself.  To be honest, I am capable of putting far too many activities into my day.  I do not need well meaning workers to add to my chaos. 

Devising activities for clients to participate in, is a role I hope will be dropped from the support workers role in the future.  Where a person has a support coordinator, guidance on choices is their role, but ultimately the participants and their families should be choosing activities for participation. These choices should be balance with their NDIS goals.  If  workers are encouraging activities that are not part of the participants plan, for example coffee at a local cafe, then this is dis-empowerment. 

Don't get me wrong I'll take any excuse to have a Chai Latte, but as director of my supports I will let my team know when and where that will be, subjected to short notice.  Sometimes the world just drives me to needing 'a Chai in a cafe'.  I am more like the average Australian than you realise. 

That's the message I want to send to all prospective support workers, not just those I engage in Team Deb.  All supports must be client centred.  If you're not happy with the activities your client chooses, then you might need to find a client that likes to do the things you enjoy doing.  

This is what the company I work for offers. Hire Up desires to match participants and workers who have similar interests. Participants and families can select team members that enjoy the same activities as them.  As the owner of a small creative business, much of my time is spent producing work to sell. I struggle to connect with support workers, who do not enjoy creating art and craft. 

There has been a movement from the medical care model, for a number of years. Under this model people with disabilities received 'care' and 'paid carers' were in a decision making role. Under the NDIS model, it is the participants and/or family members who make decisions about community participation and the daily activities they choose to engage in.  The term 'paid carer' is outdated, it comes from a time when the state government was responsible for the care and protection of people with disabilities. 

Large scale care facilities are no longer operating and even disabilities services in Queensland have ceased.  Participants today are more likely to remain part of the family unit, where the primary care is provided, thus the word 'carer' should not be used for people in a paid position.

We have been using the term support worker for over 15 years, this demonstrates societies reluctance to change. We do not need to do everything for people with disabilities, unless they are profoundly disabled and totally dependent on others to have their needs met. Empowerment is supporting participants to do things for themselves. Doing everything for those living with disabilities has led to deskilling with people becoming dependent on others. This dependence has allowed wide spread abuse of people with disability.

This is why 'choice' is the centrepiece of support under the NDIS. All supports accessed under the NDIS should be chosen by the participants or family members, not just who provides these supports.  As an additional safety measure NDIS has changed the way support plans are written, so any support must be aligned with the participants goals and the steps identified by them to achieve their goals.  Hopefully this ends the support workers ability to choose activities for their participants. 

If Sally chooses to see a movie every Tuesday, that is her choice, however if one Tuesday she decides there is a sale at 'Spotlight'  and decides to go there instead, that is ok too.  But deciding that Sally should be learning to cook instead of seeing a movie is not ok. 

Goals such as learning new skills are now decided at the NDIS planning level, once a participant and/or family member has chosen a service provider and engaged a support worker, then the workers role and the activities a participant does has been predetermined and no longer the support workers role. 

Traditional support service still require a large amount of paperwork to ensure quality services are provided. However individual support workers should no longer be planning the participants day.  Especially if people are self-directing their own supports. Duty of care should no longer extend to being responsible for all the 'care' needs that was once required.  There is no reason someone who self-directs can not write their own session reports to feedback to the NDIS. 

These are the changes most of the disability sector are struggling with.  When workers come to a company like Hire Up and apart from incident reports, participants and their families are writing everything including the support plan, workers struggle to understand their role. 

Service like Hire Up and other online platforms offer options that were missing in the traditional disability sector.  Just as any support service cannot meet the support needs of every person with a disability, it is also true for platforms like Hire Up or even contracting staff with their own ABN.  

If your support delivery style is based on traditional models of care, it is unlikely that providing supports for companies like Hire Up will suit them.  Just as clients can now choose the companies and staff they want to support them, workers can choose companies and/or clients who like the type of service delivery they provide.  Under no circumstances should it be acceptable a support person positioned in someones home proceed to challenge a participants choices and plan their day.  For participants to experience this, is dis-empowerment.

One of my NDIS goals is to extend my visual arts practise.

Currently I am gaining inspiration through my Artist's Residency

in a kindy. My support workers support me in this role.

We all need to adapt to the changing of the NDIS landscape where the role of the support worker is to empower participants and families to work toward the NDIS goals outlined in their plan. I look forward to seeing changes in the way workers empower their clients.   

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The Value of Art

Creating Pots

I am currently one of two artists in residence at Roderick Street Community Kindergarten. My residency is not about teaching the kids but sending a message to the community that artwork is work! I sense there is a general consensus that the work of artists is generally undervalued by society and our economic contribution is  not seen.  In the main we are viewed as the dropouts.  Yet it is perfectly acceptable to be a professional sports person.  

Most artists need a 'day job' of second source of income, the majority supplement their income by teaching. Sales of artwork do not put food on the table.  Having original artwork in own homes is a luxury few of us can afford.  Those who can afford art have a limited amount of space on their walls.  Until society changes its values this is unlikely to change. 

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working at kindy

For me any significant change occurs with changing attitudes of the young. I remember my father reasoning I could not take art as a school subject, because it would not get me a 'job'.  The notion that art is not work is one I want to challenge during my current residency. If the children see Mieke (my partner in crime) and myself working at kindy then these children and their parents will view us as contributing members of society. 

Winston Churchill was questioned about his funding of the arts during the war.  He answered, `if we do not value the arts (creative practice) then what are we fighting for?'

Artwork is one way of recording history and showing us what is valuable to the human spirit. It expressed faith and emotion. It inspires everything from what we ware, to advertising and architecture. Yet its producers remain undervalue and rearly is anyone encouraged to become an artists at a young age. 

Artwork is work!

I want to build a society that values its creators!  The entertainers, dancers, clowns, performers, singers, musicians, writers, actions, directors, painters, crafts people, sculptures, designers, architecture and all who bring beauty into the world; to be valued and paid as the professionals they are.  

To do this the arts need to be funded and investments made in the future generations 'who will colour our world.' I am just as passionate about art as I am about advocating for people living with disabilities.  I would love to build a legacy in Ipswich were the arts are valued for their own worth.  Opportunities for residencies is one way to achieve this. 

You can invest in my vision by contributing to fundraising for the Roderick Street Kindy Artist In Residency Program.  Just as the children have seen Mieke and myself at work - I would love to see a musician or a performer visit the kindy in the future. If you want to help build my vision drop me and email.

Artist's Journey and the NDIS

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Today I began my 8 week Artist in Residency,  My journey as an artist began in 2012.  After a serious illness I thought I'd step back and reline my choices in life. Art was something I always loved and my support provider thought I could potently sell my art. 

'Like no way! I am just Doodling.' I protested. 

The activities coordinator exclaimed that, 'No one doodles like that! That is art.' 

So determined to slow down I went home and made some 'art'. However somewhere along the line got roped in to applying for a Leadership Program.  A program that changed the direction of my life. 

The National  Disability Insurance Scheme was still being debated and  lobbied for: the system of how people with disabilities were supported and cared for needed change.  Many people living with disabilities believed that change needed to driven by people's lives who were directly impacted by disabilities.  The central change needed to be a change from being seen as a 'patient' to a person in our own right.  The motto 'Every Australian Counts' was adopted and in 2016 the Australian  Government and the Queensland Government signed an agreement to co-fund the NDIS. 

During my leadership development training I was keen to develop professional opportunities for artist living with disabilities.  I had worked in the industry for many years and never expected the opposition that occurred to my chosen objectives. In principle everyone agreed the reality was a consensus,  'I should be content to let people just enjoy art, not lead them up the garden path, that would end in failure.' There is still a belief people with disabilities need to be protected from failure. 

This was not the message I was hearing from individuals with disabilities, nor was it the focus of my the Leadership Program. During the Leaders For Tomorrow Program, we leaders with disabilities, were challenged to find a route by which our goals could be achieved and not to accept any road blocks, the word 'fail' was not used.

My leadership journey became about my two passions.

1. Advocacy
2. Art

Fast forward to today and my advocacy and artwork have become inseparable. 

 'Yes today the children at kindy, wanted to know what I was doing? And then offered advice on what the scarecrow should look like. But also wanted to know 'why I talked funny?'.

They nicely told me they couldn't understand me. I suggested because my brain didn't work the same as their brains, they would need to listen more carefully.

And they did! And together we made 'Rainbow'!

I became a NDIS participant in 2017 and this week I sat down with my planner or Local Area Coordinator to develop my 3rd NDIS participant plan.  Many of my followers know the struggles I had finding my path through the NDIS and finding the right supports to assist me to build my visual art practice. 

Yes! There has been many tears along the way. However in the main I have been able to make the NDIS work for me.  This week after almost two years, my powerchair was finally ordered.  I was  able to self manage my plan and now self-direct my own supports. meaning  I am able to choose who comes into my 'home and at what time.'

I found support workers who whole heartily empower me to achieve my NDIS goals.  They know my goals and these are at the centre of my supports session.  My goal is not to tie myself to my local community but to expand my art practice and exhibit my work in galleries outside Ipswich. My goals are very much inline with other emerging artists. 

I also got notice today I have been appointed to the RADF committee giving artists of all abilities representation in shaping the future.  The best way to make change and break down barriers is to lead the way. . . 

It is important that people with disabilities continue to tell their stories so future policies for people with disabilities are based on lived experience not research or theories. There are many faults that need to be addressed to MAKE THE NDIS WORK for all Australians not just people to have the ability to self-manage and self-direct.  We need to inform politicians on what does work and what doesn't work.

With the federal election next weekend I encourage everyone to tell their stories.  The Good, the Bad and the Ugly.

ndis & transport

When it comes to people living with disabilities and the ndis there are numerous misconception's. Access to affordable transport for people with disabilities is the biggest barrier to community participation for those who cannot access public transport on their own or live in areas that are poorly serviced by public transport.

Here's a few facts:

# Myth if you can walk you can catch public transport independently or with a companion.

Fact 1 # there are many reasons why a person may not be able to use public transport even accompanied. They are on the autism spectrum, they have behavioural or mental health issues;  they have fatigue issues related to their disability, the area in which they live is poorly serviced by public transport or transport does not get them to the required destination.

# Myth - People who are supported by the ndis receive a mobility allowance that pays for their transport costs,

Fact # 2 - ndis participants only receive a mobility allowance if they are working, studying, volunteering or doing life skills training.  The amount they receive is determined by the hours per week they engage in the community and the highest level they receive is $132 per fortnight.  This would not cover someone working full time.  The allowance is design to be only an incentive to participate, actually locks people out of the community and leads to greater isolation. 

# Myth participants travel in transport provided by their service providers for free.  

Fact # Service providers charge for transport either to the ndis or the client directly.  The participants can not charge transport to the ndis if they receive a mobility allowance. In most cases participants pay 78 cents per km to be transported to and from their daily activities. 

# Myth Service providers transport every participant they support.

Fact #  - there are providers who don't provide transport and participants need to access a transport service or taxi to access activities offered  by service providers.

Myth # - TTS allows the participants to pay half fare. 

Fact #   The half fare only applies to the first $50 any travel over that amount is at normal price.  It costs more than $50 from North Ipswich to Springfield Orion. 

Fact #   The availability of affordable transport impacts on the choices the ndis participants make. 

Transport and the communication on true costs to participants has failed.  When I was mentoring artists with disabilities their transports costs were higher than the art classes I booked them in for.  I often travel to them  by cab although I was ineligible for a mobility allowance at the time.   I am sure you can do the maths on how far $132 got me. 

Current subsidies do nothing to encourage people to participate in the community.  They remain a deterrent to full participation in the community, even when those activities are offered by providers.  This does nothing to assist the participant to live a life of their peers.  Which was the original intention of the ndis. 

Assistance with transport costs for those who can only travel by taxi needs to be fully funded by the ndis.

Every Australian Counts and the ndis

The National Disability Insurance Scheme is set to be fully rolled out by the end of the year.  This scheme was designed to address some of the many disparities between people with disabilities and their peers. Throughout the history of Australia as a minority group traditionally people with disabilities have had no voice in our democratic system.  This has lead to wide spread abuse and no access to the legal system when their rights are undermined. 

The path to people with disabilities finding a collective voice was the Every Australian Counts campaign, this is where Australians with disabilities, their family members, caregivers, guardians and community supporters lobbied the governments for the right to have an active role in the democratic system.  From this two things gave people with disabilities a greater voice; 1) A royal commission into their care and 2) the ndis we have today.

For the first time people with disabilities were able to tell their stories and were believed.  Australians potentially could take their abuses to court.  It was recognised, that this alone left them dis-empowered and still unprotected by the law and society as a whole.  This was only part of the formula to giving people with disabilities a say in what shaped our nation.  Disability on its own did not disqualify people from taking part in the democratic process and the Every Australian Counts Campaign highlighted this. 

What really stopped these Australians was access to services and amenities that were open to other Australians.  Things like education, job skills, training, employment, the arts, transport, sports and recreation.   Not only did individuals face access barriers in the community, but their family members too.  Often parents needed to forgo income to stay at home and care for their child with disabilities, in the same way children whose parents became disabled lost their childhood and access to education to care for their parents. 

Those living disabilities (the persons with disabilities and family members) were disadvantaged in terms of education, employment, access to the legal system and economically. However all the general public chose to see was the drain on the public purse, not the true causes for their inability to participate in economic growth of this country.  Discrimination was often unseen and occurred because the complexities of the issues lead to people with disabilities living on the outer of our communities. 

The nature of disability itself in not well understood.  A wheelchair is currently the international symbol of disability, in reality the majority of people with impairments do not use a wheelchair. Many people have disabilities that are invisible, yet they still need support or assistance to live their daily lives. Impairments leading to disability can be physical, neurological,  intellectual, sensory, social, psychological, behavioural or a mixture of two or more of these impairments. 

I was born with cerebral palsy which is primarily a physical disability that is a result of a brain injury occurring prior to birth or in the early childhood years. This means every person with CP will have a physical impairment. However depending on where the damage occurs in the brain, a person may have a neurological, behavioural, sensory or intellectual disability.  CP is just one example of disability and yet society wants to put all people with disability into one basket.  

Disability occurs as a result of the way our society is structured - not the 

impairments themselves.

Disability occurs as a result of the way our society is structured.  In other words, the complex way of living denies people with impairments, access to the community in the same way as other Australians. Resulting in a limited experience of life both for people with impairments and their family members.  

An individual may been born with impairment(s) or they many acquire an impairment at anytime.  By the time an individual reaches the age of 80, 90% of people will have some type of impairment that limits their ability to interact in the community. Disability is something that will touch all our lives, in some way, even if we do not acquire a disability ourselves.  Making it an issue for Every Australian.

The ndis was developed for every Australian

All Australians are only one illness or accident away from having a significant impairment that alters the way they are able to access society. 

The ndis was originally to address these access barriers both at an individual or family level and at a community level. In the same way a powered wheelchair enables me to access my local community independently, for someone with an intellectual impairment a life skills course may enable them to be more independent.  Or assistance for a school aged child with complex disabilities to get ready for school in the morning, may allow both parents to work full time.  Until now a child with an impairment could limit family's lifestyles in significant ways. 

The primary objectives of support(s) is to allow a participant in the ndis to be as independent as possible. The ndis looks at the life span needs of an individual and asks what investments can be made now so participants can have a better quality of life into the future.  It looks at potential access issues before they occur. 

ndis is assistance for people with disabilities to engaged in their local communities.

Most people with disabilities are able to work when given the correct support and training, in the main it will not be full time.  I am self-employed and run my own business, I would otherwise be unemployable due to epilepsy. Most people who will be supported by the ndis desire to engage in the life of the community. This is one of the many ways we wanted to be included in everyday life. There are some participants who are profoundly impaired or have a disability that will result in premature death.  There are a small percentage of people who will require 'traditional disability care' under the ndis.

The ndis moves away from the traditional medical care model to a model where individuals and family members are fully participating in the planning of their supports and participating with that assistance to engage in the community.  Instead of meeting the immediate needs of participants, the ndis seeks to support individuals to reach the goals, both short term and long term, as well as enabling them to build a lifestyle of their choice. 

The ndis promotes independence rather that depends on a life time of 'care'.  It will achieve this through early intervention programs; give access to therapy, equipment and environmental modifications to all participants not just those on lower incomes.  This means no one should  be financially disadvantaged due to meeting access requirements of disability.  

However the ndis has failed to address the costs of accessible transport and affordable housing that meets the individual needs of living with disability.  Six thousand young Australians are still living in aged care homes and many in group homes where they're unable to choose their own house mates.

While I was running a professional development arts program for visual artists living with disability, the number one access issue was the cost of transport.  Many people can not access the public transport system due to disability or their disability combined with where they live.  Many of my artists received a mobility allowance and were eligible for the TSS.  Even then they couldn't afford the transport costs of getting to their classes or mentor sessions.  In many cases the transport cost of getting to the class was significantly higher than the class itself.  

The Queensland Government is considering removing access to the Transport Subsidy Scheme to ndis participants.  Many participants are still isolated due to transport costs,  Transport services for those with disabilities are now unsubsidised, putting them beyond participants. Failing to provide an affordable transport for people living with disabilities has left participants without a way to access their community activities. 

Accessing the ndis itself has been plagued with problems.  The website itself is inaccessible, the starting place for everyone wanting to access the ndis.  The entire scheme was based on the Centrelink model a system riddled with access issues for us all.  While such access issues continues to remain unaddressed the government does not consider people with disabilities as equals.     
        
Both sides of the government have failed to secure funding for the ndis into the future.  Due to the many difficulties in navigating the ndis millions of dollars have been unspent.  Instead of using this money to address the issues and ensure every person has equal opportunity to participate in the Australian way of life.  The government have diverted it to other areas allowing them to bring the budget back to surplus. 

Nothing has been done to woe voters living with disabilities, our votes and our voices are still of little significance.  Addressing our needs and our rights still is very low on the national agenda.  The future of the ndis needs to be put on the 2019 election agenda.  The current surplus needs to be reinvested to improving the ndis.  Anything less says to people living with disability that they don't count. 

Those of us with disabilities labour under a constant battle to be heard.  We ask you to email your electorate candidates and ask what their party intends to do about fixing the problems of the ndis. People with disabilities do count and we should be accommodated by the Government.

Ipswich Art Community - What really hurts

It's about the spirit of the awards.  The Ipswich City Council stepped in last year to save the Art Awards. Until then the Art Awards were driven by Ipswich Artists, groups and the business community. Members of the community gave their time to organise and run this event in order to encourage other artists in the region. My own growth as an artist is due in part to Wayne McDonald and Glen Smith who kept encouraging me to enter each year because they saw my potential. 

My perseverance through their encouragement paid off when I received a Highly Commended last year. This is the spirit of the awards and now I encourage other artists to have a go.  However having a go this year is not the same.  The cost of entering is not rewarded with a chance to exhibit and sell your work.  The realty is the Ipswich Council have contributed a small amount to the cost of the awards.  The rest was paid in artists fees @ $30 per entry and the $25 to attending the Awards night.  

This year there are only first prizes in each category and no highly commended on offer to provide encouragement.  Previously other awards have been offered to invest in up and coming artists such as an emerging artist award and a printmaking residency.  Works were also acquired by the Ipswich Gallery and local businesses.  

Effectively the Ipswich arts community are funding these awards not the Council.  Resulting in the arts community hurting.   There was no indication that all artworks would not be hung and there is certainly no investment in further artistic careers being made. This is what really hurts.

The withdrawal of sponsorship's last year was due in part to the Ipswich City's Councils actions and lost of trust in the community.  Despite the event being run solely by community members each donating hundreds of hours of their time to make the event successful.  This year is no exception Arts Connect are again manning the exhibition for the 3 days it is open to the public.The arts community as a whole, not just visual artists, but performers, musicians and poets heavily support other events during the festival. 

What hurts the most is much of this information about not all working being hung was not divulged before entering art and buying opening night tickets. It was only upon delivery or art this information was given on a slip of paper.  The lack of transparency from Ipswich City Council is still evident.  It feels personal and like a kick in the guts.  The actions of the Council devalues what artists give to the community.  

This is not what the awards  were about.  We are discouraged as community but united in our resolve. We will celebrate our own achievements in our own way on the 26th April at Salon des Refused at the Arts Alive Gallery, we ask that the Ipswich community come and support local artists over the weekend of 26 to 28th April by purchasing work.