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.