Its is the season. . .

The Silly Season is Upon Us

Many refer to this time of year as the Silly Season, in my book that's a pretty good description. Society tells us its time to be Merry, Happy and celebrate the year, for too many that require the consumption of alcohol to party and for others to still the pain of life. Not only do some of us drink to much, but eat too much and don't get enough sleep! Which is silly don't you think?

At anyone time 100% of people will never be happy.  Christmas or holidays for many are lonely and fully of pain.  I think of those who lost love ones this year.  But also those who will stop to reflect on the lost of a love one during the Christmas season's past and for some of extended family this is the case.  Their sadness is remembering the lost of someone who brought love and joy to their lives.  Others will sit with those who are terminally ill and will say good- bye to someone they love.  For these joy comes in being sad and is silly to ask them to celebrate Christmas?  

We have fallen on hard economic times, especially in my city.  2018 in my city has not been great. Its been an unsettled year, that has at times divided a city, and we have taken our pain, hurt and disappointment out on others.  Sometimes those 'others' were not even directly involved in our cities struggle.  While I celebrate small gains, some of my friends have lost dearly.  Some have no money for Christmas presents and some will not be having Christmas lunch. 

Even is the best of times we spend more on Christmas lunch than we do for the average weekly shop.  Christmas lunch takes days to eat and longer to remove from our tommies. They silly things is most of us have brought the lie and celebrate the holidays the way we are conditioned.  For some their hearts cry when Christmas doesn't reflect on what it means to them.   How silly this is?

I have my own private struggle as I receive gifts, I can not use and food I can't eat due to allergies.  I have more things in my home that I will never use despite giving much away.  If it's the thought that counts . . . its the gifts that people actually purposefully brought that mean the most.  A friend bought me chocolates, she called that lazy, but in truth she selected chocolates, that were to my tastes not commercial chocolates. . . That takes thought and care, another drove across town to by my favourite tea,  Just a packet of tea, no! Tea I drink sparely as a treat. Another noticed I could use a new wallet.  My best friend knows I have allergies and brought me a cookbook for allergy suffers.  These are special thoughtful gifts. Silly how others think its about how much was spent and have debt to repay after wards.

Christmas for me is about the greatest gifts, the blessings of family and friends that are thoughtful in giving their time and support and love 365 days of the year.  Not once a year out of obligation.  Christmas reminds me how rich I am.  Not only do I have more friends than most I am blessed with friends who share my values and know me well. Friends that genuinely celebrate my health and regaining of strength. Friends that share whats important. Friends that reflect on what Christmas should be about. 

Peace

Without love we can not have peace, 

without stillness and contentment we can have not peace,

without security we can not have peaces, 

without understanding of self we can have no peace,

without true peace in our soul we can not have joy.

Joy

Joy is independent of happiness,

It is not dependent on people or processions,

Joy is born of security,

Joy is part of belonging,

Joy is feeling secure even when, 

the year was unkind.

Joy is counting blessing rather than what is lost. 

Joy is the hope of things to come. 

Hope

Hope looks to the future,

Counts current blessings,

but looks forward to more,

Hope has enough love within us,

to step forward even when it hurts,

Hope recognizes truth and honesty,

and value the pain of the journey. 

Personally I find these three things in the person of Jesus Christ, the on who taught me about true love and that peace, joy and hope could be mind in the abstance of worldly happiness. Christ love me  enough to find security, stillness and joy in the presence of pain and suffering. Christ gave me life and reason to hope.  Whether life gets better or worst, with my eyes fixed on the author of hope and eternity, my heart sings of peace, joy and hope. 

Christmas doesn't need to be Silly.  If we attach meaning and use that as our foundation. Christmas may not be the Christ child's Birthday, thought to be September,  it may have pagan roots and Coke-a-Cola inventing Santa Clause based on the Chacoltic Saint Nicholas, But its the season I remember Jesus Christ's personal gift to me.  The day God gave up his own, to live and die for me. 

Because Christ showed me how to love, I have peace, joy and hope. These are independent of the world around me. If I could have anything this Christmas, it is more people in the world understood how to live with the peace, this joy and eternal hope.

Christ child born to die on a tree,

This is what Christmas means to me.

It is the season to remember 

This gift was given to me.

The year it was . . .

And a fantastic year it was!

In the middle of the year I entered into my second ndis plan and all that it means to be part of the schemes: the highs and the lows, tears and frustrations, endless red tapes and phone calls, because no one quite has their finger on it yet! On the other hand celebration as I achieve my goals and continue to take leaps to live my best life. After years of frustrating using support providers that couldn't quite provide the flexible support needed by an artists and arts worker, I had enough and step out to establish my own team of workers. 

My year started thinking about the type of people I wanted around me to empower me to achieve my ndis goals and beyond.  What makes a great support worker and where do I find them?  I did my training to self-directing a team with Staffing Options while writing job descriptions but consulting those who knew me and the disability sector well.  With job descriptions written, Staffing Options gave me the name of a recruitment agency.  I then wrote adds, screen applicants, interviewed, did reference checks, conducted induction and training.  And after all that I transitioned from my then provider to leading my own team!  WOW!

I found three beautiful creative women willing to share my passion. Unfortunately artists are re noun for butting heads and Julia and I could make it onto the same page.  I feel blessed that despite everything we remain friends.  

Julia's graduation art exhibition

Thank you for letting me be part of this and your year. Since then its been a challenge to find that third key worker.  Together Jacinta and I again recruited and interview but the lady we choose did not work and so we used staff from Better Caring  now called  Mable and Hire-up and there's been some misses along the way. If I found Jacinta and Jo and I know what I value in them, I am convinced in time I will develop a strong team.  

We have casual team members that help when members are sick, on holidays or on prac.  Recently we meet Mandy through High Up and the delightful Kylie is joining us in 2019.  As we travel together to reach my goals we sure to meet others along the way.  Building a support team to self-direct was my main ndis goal the other is to extend my visual art practice and host a solo exhibition outside Ipswich.  To this end I will be exhibiting at Greaser Gallery in Brisbane in the new year.

Other achievements in 2018 have been my continued partnership with Ipswich Arttime Supplies and Arts Connect.  Its been a challenging, hectic but very successful year and in roads made to becoming a more inclusive arts community the allowing artists with disabilities to have a voice.  This turn out to be the most successful event of 2018 with 300 people attending the opening. 

Along the way I collected my first highly commended in an art exhibition, I presented the Melting Pot at Drawing Point Art Gallery, continued my artist membership with Aspire Gallery working with Irene and continued to be active as an advocate through Access Arts and Arts Access Australia.  However managed to dodge interstate trips this year. 

I continue to work with Brisbane Rotary groups and joined Lion's for the fundraising art exhibitions.  I also took part in the Brisbane Festival and Boonah Art Festival and a few events in between.

Somewhere in there I found time to regeister my business and join forces with Angie the owner of the Retro Diner.  I am now regularly recieving customer orders and enjoy eating my way through my profits.  I currently have work for sale at The Retro Diner, Limestone Emporium and Arttime Supplies Ipswich. 

On the Home Front

One of my long term goals is to  maintain my Independence through a healthily lifestyle balance, this year I feel I've gotten close to the mark, with the inclusion of a regular physio program. My goal was to increase my core strength, well I achieve that and more!

When I put my wheelie friendly garden in last year, I was very unsure on my feet and constantly looking for things to grab hold of to steady myself.  After 10 months of physio I am now standing confidently and can walk unaided for short distances.  My overall general health has continued to improved with the correct diagnoses and adjustments to my diet. 

Both I and my cat, Ashes enjoy digging round the garden and I enjoy eating the eatable plants. Ashes is now 1 but has keep me well entertained.

We also had a few milestone celebrations in the family this year with my parents celebrating the Golden Wedding Annveristy, My 50th Birthday and my brothers wedding.

I am very excited about 2019 and the possibilities.  I am determine to advocate for the full impletementation of the ndis and for the ndia and service providers to empower people with disabilities to self-determine their own futures and supports systems.  At the close of 2018 ndis is yet to deliever the choices and flexibility it promise. As a community as a whole we continue to sell people with disabilities short.  

I continue to enjoy fellowship at the Booval Gospel Hall and marble the Lord's abundance and blessings.  As I personally reflect on the Birth of Christ,  I bid you a Happy, Holy and Safe Christmas seasons and look forward to the journey ahead. 

Merry Christmas

ndis and ecomonic development

When it comes to creating government polices the government likes to spout about economic growth and reform. This is where a piece of legislation is created to either create jobs, encourage spending or lead to a stronger Australian economy.  When it comes to the ndis most people view it as welfare reform or socially the right thing to do.  Neither view is correct, so lets look at the facts.

ndis reform and productivity increase 

How does the National Disability Insurance Scheme impact the Australian Economy? You may of heard the phrase 'the ndis is reform for all Australians', one of the primary reasons is employment and job creations is at the heart of the reform.  Given the increase in the number of Australians being able to access support for daily living, more jobs will be created.  

One example of new jobs created under the ndis is the area of Assisted Technology.  More people with disabilities are finding their independence in the community through increased use of technology.  For participants to be able to access devices and equipment, such as computerised communication devices, specialists in IT are needed. 

The key agenda for ndis reform is to enable people with disabilities to access the wider community and participate in the local economy.  This can occur through skills development, education, training (including life skills courses); employment, community work, sports and recreation, and arts and culture.  If people living with disabilities and their families are out and about they are spending money and therefore contributing to the growth in the economy, which stimulates job growth. 

One of the access issues for both participants and their family members has been access to employment.  People living with disabilities (this includes family members) are more likely to be unemployed or underemployed putting strain on the welfare system. Until now family members of participants with profound disabilities have been unable to work, as they have been full time carers for their love ones.  Families can now access before and after school support and day respite to allow members of the family to return to study or the workforce. 

I like to refer to people with disabilities as the most under utilised resource in the community.  This occurs for a number of reasons. 

• Community attitudes
• Discrimination
• Not recognising ability
• Putting people with disabilities into the same box

I have written much on the misconceptions around disability and the struggles to dispel in gaining beliefs on what it means to live with disability. So we have began to look at a small section of those living with disability in terms of employment.  Family members of participants who are profoundly impaired.  No one is expecting those in need of 24 hour care to go out and find work.  For this group of individuals ndis is about increased opportunities for family members. 

So we need to define both what is disability and what is not, because many people are labeled disabled for the wrong reasons, and a general assumption that people with disabilities are unable to work.  This comes from the welfare model of disability.  Many people on a disability pension are medically disabled or unable to work.  This level of disability is not impacted by the ndis reform. 

Under the scheme, participants are those individuals who need some type of assistance with daily living tasks.  This could be provided through an assistance dog, technology, software, early intervention, physiotherapy, support in group settings and individual support.  Despite public perception very few people with disability need 24 hour support. So the first thing the ndis looks at is over a persons lifetime how can we support them to be more independent.  So we are moving away from creating dependence on government resources to being independent of others. 

In other words we are moving away from a model where medicine defines disability to a more social model of disability.  Under the social model, disability occurs as a result of an impairment in the normal function of an individual. The ndis only looks at a persons impairment to determine eligibility.  The ndis is not concerned with what someone can't do, but the things they can do and how ndis can assist the individual to participate in the community.

ndis explores ability not disability

It is hoped that some participants will move into being employed, self-employed or giving back to the community through volunteering.  The presumption that disability blocks every aspect of ability to make a meaningful contribution is one that needs to be dismantled.  I like to think I am a great illustration of this. 

The general community (those who do not know me) assume because I sometimes use a wheelchair, I cannot walk and because I have a communication disorder I have an intellectual disability. Even those who know I do not live with my family, think I live in support accommodation.  All of these assumptions are false, here we start to see misconceptions alone provide access issues. 

Now you would think if anywhere the facts would be known it would be the disability sector.  Wrong!  I have worked in the sector for nearly 20 years (although in the main this has been unpaid) when I show-up for work 95% of staff confused me as a client.  Where is the art teacher?  Well, today I'm afraid I am it! Are you and your client joining the class or not?

I am the founder of Ignite Artists

We support artists with disabilities.

Let me tell you about myself, I am Debbie Chilton BA among my many achievements are a degree in behavioural science, poet, publish author, visual artist, Queensland Representative for Supported Art Studios, community leader and disability advocate. I live independently and share my home with one very spoiled cat. So what in my CV spells out I am incapable of working. 

 Let's add small business owner and designer.  I am now designing everything from t-shirts, aprons, mugs and now tea pots. I am self-employed and my business is finally growing. Still not profitable but I am now getting at least one sale a week.  I am part of the Ipswich Women's Business Network and in addition to my giftware range, I regularly exhibit in a number of galleries.  When you look at my artwork you can't not see my disability, only my abilities. 

I am widely known for my skills as a print maker

Despite my CV I have never held paid employment.  I have had short-term contract work, but most disability providers expect me to work unpaid even when I am the most qualified team member, such is the communities economic value of my skills. Don't get me wrong I love my work and obviously money is not my motivator. I am just one example of the many Australians living with disability who are underemployed and skills go unrecognised. 

Fast forward to 2019 and I will have paid employment.  I hope to be supporting other people with disabilities by sharing my skills and knowledge on the ndis, self-directing, selecting a support team, art, business skills and promoting my employer Hire Up. I am proof the the ndis works, in the way it was designed too.

I AM PROOF THE NDIS WORKS!

I employ workers who have never worked in the disability sector before; my business at least has achieved a turn over; and I am getting job offers. 

I challenge anyone who does not see the National Disability Insurance Scheme as an economic reform. The fact that I will always be type cast.  That is other people's issues.  Under the ndis I am continuing to move forward in so many areas of my professional life.

Retro Diner A fun place to base my work life! 

NDIS Economic Reform Facts

• The ndis is not a form of welfare and is completely separate to Centrelink.
• The ndis is independent of any other assistance a participant or family member receives.
• ndis participants may be on a government supplement or be looking for work or be employed. The employment status of the participant does not factor into the size of their ndis plan.
• Every Australian with a disability is not eligible.  Some participants will be on a disability pension but many won't be. 
• Most people on the disability support pension are not eligible for the ndis. 
• To be eligible for the ndis you must have a life long disability that affects daily living function to a point that you need some form of assistance.  This may be a mobility aid, technology, assistance animal or a person or a support service. Only 460 000 Australians will need to access this type of support. 
• Most participants are children of people who work or people who work themselves.

Self - Directing and Support Worker Role (ndis)

The National Disability Insurance Scheme gives participants and their families and/or their carers choices around how they want to be supported; the support agencies they want to access and the times they would like support.  On my blog we have explored many choices on how you can ask for your ndis plan to be administrated. 

One of these options is to self manage, if you are self-managing your plan or someone you care for, you are the person responsible for spending the funds as set out in your plan.  You might remember I shared information on some of the supports you can access to enable you to do this effectively.  For example you can ask the ndis for a plan manager, this is a person or organisation who can advise you on budget choices and usually pays your invoices on your behalf.  What services and supplies you access is up to you.

Self-managing gives you the greatest flexibility under the ndis, as you are not restricted to using a ndis provider.  For example you can use any registered physiotherapist, if physio is included in your ndis plan.  If you struggle with housework you may prefer to hire a cleaner rather than a support worker, so you can use that money on other things.  If you are self-managing you can use your plan to pay anyone with an Australian Business Number to provide you with support.  However, there are some things you will need to be mindful of. 

There are a number of ways you can engage support workers.  

1. Self - directing support staff services.
2. Agency support staff
3. Support staff with their own ABN
4. Setting up your own personal support services. 

Every employer has a duty of care to their employees and their clients, to do this they develop policies and procedures along with general guidelines on how to support clients.  Different organisations will require different levels of training.  If you are self-directing you can decide the level of training you want for your staff.  However there are industry requirements around training for some types of support. e.g. peg feeding and manual handling.  An employer has a duty of care to provide the correct training to protect their staff and clients.

So what happens when support is provided under an agreement of two parties ie you the participant and the support worker.  If the worker has their own ABN then they are responsible for their insurances and payroll.  You have the right to ask for any documentation that will ensure your safety.  This is not a friend doing you a favour and thus you need to check their qualifications. I recommend that you put together an agreement, something in writing and print a copy as digital files can be altered after things go wrong. 

So you want to spell out what happens in an event of an emergency. Is the worker and participant covered for injury and how? What is the paid rate and are you guaranteeing a set number of hours?  What happens if there is a disagreement between the two parties, how will workplace disagreements be resolved? Do you have someone who can play a mediator role?  There are advocacy services you can access if things get off track, but a written agreement that sets out how things will be resolved if any party involved is not happy is required.

So if your are directly employing a support worker you have the sole responsibility to provide working conditions under the employment act, and you can read this online or contact employer services.  In this post I am only discussing what you might term human service not the financial responsibilities.  So that is things around duty of care, insurance and work place practices; professional and personal boundaries.  In any work agreement of this nature both parties have a legal obligation to show due care for the other.  This covers accident and income protection; physical, emotional and psychological harm.

I know participants not considering these things fully when engaging workers, but I personally do not want to go down that track.  I want to care for my workers workplace needs so hopefully they will also do the right thing by me.  So what happens in the absence of polices and procedure?

Many organisational policies are developed around different legislation such as work, health and safety.  This applies to all workplaces and if you are engaging staff to support you, you must provide safe working conditions. This is something that falls under due care.  If you require someone to work more than 10 hours than that could be seen as not taking due care for a worker.

Regardless of how a support worker is engaged, there is an industry standard of practice and this too can be found online.  I would be wary if any worker, that dismissed any legal responsibilities and workplace safety.  e.g I do not have to follow PPE.  I got this a lot when I accessed traditional support providers,  Nah, we can wear thongs.

As an ex-member on a Board of Management of a Service Provider, I know under workplace and safety laws closed-in shoes must be worn.  I like to say if my health and well-being is at risk I have a right to feel safe and I don't feel safe if you are pushing my manual wheelchair in thongs and if I am hurt that will come up in a court of law.  So if I have trouble asking for professional boundaries when people are employed by an organisation what hope do you or I have with only a working agreement?  I have tried it once and for a long-term working relationship I would not do it again. 

Support workers are very forward about their personal comfort, and their perceived duty of care, that they often overlook the obvious. Like coming to work with an injury or when they are emotionally unfit because they need the money.  

People will do anything they think they can get away with. Which is why I think participants who self-direct need good personal boundaries as well as ensuring professional boundaries are followed. 

PROFESSIONAL BOUNDARIES

Professional boundaries apply when there is a working agreement between two parties, this can be either paid work or unpaid work and does not apply to friendship where a person might be 'just doing a good deed'.  This is why you want a working agreement in place, so you have a clear line defining the person is 'at work' not just hanging out with you.  In most industries when care and support is given there is a code of practice among privacy, confidentiality and respect.  In my opinion the code of practice stands regardless of who a support worker is engaged with.   That includes being contracted under their ABN.  Using an ABN does not make the support worker the boss.  This is referred to as self-directing support for a reason and that needs to be made clear at the start of the working relationship.

For me, whether we're talking about privacy or confidentiality, respect for the person is involved.  Participants due to the nature of their disability need to allow workers into their private lives and homes.  For some participants who require high personal care, that will require contact with private areas of the body.  The participant has a right to feel respected at all times.  I am unsure if some workers are fully aware how much trust we are required to put in them.

What is private and what should be kept confidential? So obviously as a epileptic I want my workers to pass on some private information to people who are providing medical care.  Things like Deb is allergic to . . . . . while I am not going to give you that information, I want the paramedics and hospital staff to have it.  I also access a medical on-call service so I also want them to have that information.  However, anyone outside the call center should be told nothing of the emergency situation.  So a support worker should not be saying anything about a medical incident that occurs at work.  Personally, I don't mind my workers saying Deb had a seizure today, a partner is a good person to give a debrief.  Any details of the incident are private, unless an incident report needs to be written for a workplace.  Unless my seizures are out of the ordinary or my seizure response plan is not followed my  providers are not required to write a report.


As incidents occur, I realised bending rules like support workers family members knowing where I live is not fair.  I had a worker whose partner dropped her at work.  When the two broke up and she took out a Apprehension Order against him, he knew where she worked and the time of her shift and he would wait for her to leave. What seem like a harmless breech in client confidentiality put my personal safety at risk.  Most policies and professional boundaries are there for a reason. 

This why service providers discourage friendships. Friendships blur the professional boundaries. I also think my definition of 'friendship' is different to most people.  I have a wide circle of friends and an even wider circle of colleagues.  I do not consider even artists in Ipswich as my friends, but there are a small number I have a very close relationship with.  While I am to a certain extent very open, there are some things I only share with people I trust. 

While self-directing has certainly changed the dynamics between myself and my team we regularly discuss our work boundaries and we check in with each other.  Is there anything I am doing that you are uncomfortable with?  Of course this is much easier to do in a team where we all have strong personal boundaries, it is much more difficult when people don't respect my personal boundaries. 

I engage some of my workers through a self-directing service, these staff are hired and trained by me, but are employed by a service provider and I don't share them with other clients.  However, as my readers know I engage staff through online platforms such as Hire-Up and Mable.  While both these companies do have duty of care to me as a client, some of the agreements are much more causal. So even though both I and the worker are aware of workplace health and safety laws,  workers still turn up in thongs and want to debate PPE policies.  

You can only imagine if workers are challenging policies enforcing laws what other boundaries a blur are bent or broken.  Everything is fine while all parties remain respectful,  but when trust is broken or one party feels taken advantage of, what seems harmless at the time can lead to repercussions.  Recently, I have experienced this with workers, who talk freely about other clients they work with and who may be expecting I might want a similar working relationship as other clients.

Like I say I am abundantly blessed in the friendship department and I do not pay any of my friends to give me a lift to a function we're all attending, or to pick up a few things at the shops.  When workers discuss other clients as if they are friends, what are they saying about me to other clients?  When workers share mutual clients and I have a fallout with one worker, how does that affect other workers on my team and any clients they may share? 

Clients should never be discussed with other clients or in front of them even if it is not private information.  As far as I am concerned what happens on shift or in my home stays on shift, if I am being told personal information about another client, I am sure my personal information is being shared also.  I, like every other Australian have a right to know who knows what about me in the event we might one day meet.  What workers share with other workers could be classed as gossip and hear say. Likewise, if workers talk to me about other team members about anything unrelated to me, then I have no yard stick to know if it's the truth or not.  Not to respect someones privacy is just bad work practice.

These are gifts to offer as friends and do not expect anything in return.  When workers give me gifts and do favours, I get worried.  I don't mean when they bring me produce from their garden because they know I will return the favour.  I mean things like buying me hair accessories so they can put them in my hair.  This means a worker is making choices on my behalf and I feel obligated to accept these and be grateful.  This too is harmless and things can and have previously spiraled out of control.  Maybe for some I am too black and white. 

Communicating with workers on social media seems harmless especially when you have an open and honest relationship.  However when boundaries are already blurred, i.e. I am told things about other clients, then what seems like a very safe post about enjoying a night out, can hurt a client who you lied to and cancelled their shift.  If you are cancelling to catch-up with friends, just be honest. Something just popped up would you mind. . . .  I now need to consider if I would be friends on social media with workers I engage in the future. 

I do believe participants who have strong personal boundaries and work with workers who have good professional boundaries even if a participant is self directing, as long as both parties respect each others boundaries even friendship on some level is possible.  I am also aware as an artist and public figure, boundaries are already blurred, so I like to discuss this up front at the beginning of working agreement. 

Self directing, personal boundaries and the ndis

One of the many choices participants can now make under the National Disability Insurance Scheme is to self-direct their own supports team.  This can occur under a number of different models.

1. Some support services offer self-directive services.  This is where support workers are employed by the service to work with a specific participant.  The service I use offers several different ways to self-direct.  Having strong professional boundaries is important to me so I wanted policies and procedures to protect both my workers and myself.
2. There are new types of support services emerging as participants are encouraged and empowered to direct more of their supports.  Participants can completely self-direct through becoming a sole-trader with an ABN  (Australian Business Number) or they may contract workers who have an ABN. 
3. In addition to the staff I engage through the support service provider, I have been engaging staff through online platforms like Mable and Hire Up.  These companies offer the legal protections under their policies and procedures.  Participants agree to follow these when they sign their service agreements.  
4. If you are engaging your own support workers through their ABN or your own then I would recommend there be a written agreement of what happens if either party is injured, hurt or abused in anyway.  As an employer I want to ensure my staff feel valued and protected at work or they waver their right to compensation if they are injured.  These are some of the issues participants are not considering when they engage support staff.

When you're thinking about engaging your own worker, you need to be clear on:

1. The personal qualities of the worker.
2. The types of activities you will be doing together.
3. Will the worker be required to drive.
4. What hours are available and what is the pay rate.

Traditional providers have a screening process to ensure workers are trustworthy and will treat clients well.  As an individual you too can request your workers have police checks and road worthy certificates if you are traveling in their cars. It's all well and good to say your working partnership is based on trust and honesty, however when things go wrong, people become bitter and self protective. Sometimes things end up in court.  Policies and procedures of services are there to protect participants and support workers. 

What does a support worker do?

Under the ndis the support workers role is to empower participants to achieve their ndis goals. Historically Lifestyle Support Workers were carers or personal care attendants, depending on what the needs of the person with a disability were.  These workers had a 'care roll' and a sense of responsibility for their clients.  Today a 'carer' refers to an unpaid person who plays a caring role in the participants life. In most cases this is a parent or family member. A common community misconception is that all people with disabilities have carers. 

Carers are often legal guardians of adults over the age of 18 that need protection in some aspects of their life.  Usually in matters regarding money and the law.  Some people with disabilities for whatever reason prefer to use the public trust.  It doesn't matter who I am out and about with: a family member, friend or worker the general public assume it is a carer.  Over the years I have had all sorts of questions, including Do I need to call someone to check it's OK to spend $20?

Umm! They could try my cat!  However even if I did have a guardian I would not need to check for such a small amount. This poses a good question on what are the responsibilities of a support worker.

Every worker engaged to support a person with a disability has a responsibility and duty of care at all times. However, this is not a decision making role. Most support services are moving towards a participant centered approach, where the participant directs how a support shift is structured, not the worker.  In some cases this will be guided by a parent or carer. And a support plan will direct the areas in which the participant needs more guidance such as handling money, behavioural support or medication.  In these cases workers must follow the support plan or they are legally responsible.  

Support plans are not guidelines or suggestions the are legal documents that are part of service agreements.  If workers do not follow plans and things go wrong, they will be held legally responsible.  As representatives of an organisation they must carry out directives in the support plan.  Platforms such as Hire Up and Mable do have support plans for all participants, part of their agreement in using the platform is agreeing to activate the participants support plan. 

Even if you are directly employing your own workers you can attach a support plan to a contract or working agreement. Support always works best when expectations are clear. No matter who is the employer, the participant is paying them under the ndis. They are directing. 

Boundaries are the things in our lives that protect us and those we are with from harm. A fence is a good example of a boundary, if a fence is locked then people can not enter a property. If it is a pool fence this keeps children from drowning.  So all boundaries whether they are seen or unseen provide protection.  However, not all people have good boundaries, people still try to break into houses. If we are working with people who have poor boundaries we need to ensure out personal boundaries are strong .  I do not allow people to smoke on my property, not even my family.  That is a personal boundary I have that I may not share with others.

If a worker is employed through an organisation there will be a policy around this and in Queensland there is generally a no smoking in the work place rule. As a participants house is a work place you can not legally smoke in their home.  There is also a professional code of practice a support worker must follow, these are referred to as professional boundaries. When support staff work in a community setting organisations and individual employers rely on staff to do the right thing. 

For me boundaries all come down to one thing, respect.  I like to remind people that respect is a two way street.  If you want to be respected and trusted you need to be respectful.  'Trust of a participant is not a given, it must be earned.' Under self-direction agreements where trust is broken a participant is entitled to end the agreement. Ultimately this may be the protection they need to take. 

In my home I have three very simple rules:

1. Respect for self (Worker) - own your own values and beliefs, know what they are and do not use them to influence others. (participants or team members).
2. Respect for participants, their family and their homes - Think how you would feel having to let people into your home, your personal space and bedroom.  People with disabilities who need support have no choice. You need to respect their space. You do not need to interact every part of the shift, that is an invasion of privacy.  Participants don't want to hear your suggestions all the time, they want to be supported to live their own lives. 
3. Respect for other support workers or professionals in the participants lives, this may include family members. Your way of doing things is not the only way.  There is only really one right way,  the way you are directed.

To break any of my simple three rules means you will be asked to leave my house.  Likewise if you feel disrespected I would expect you to terminate a work agreement. In a ndis environment more and more we need to insist on good personal boundaries. 

In self-directing there should be not be an increased threat of harm to participants. My workers role is to empower me to achieve my ndis goals. 

ndis its not always a hit to be a square!

After years of not fitting into any boxes and being squeezed in anyway so I could access some supports such as in-home supports and community access, I am now participating in the ndis and living what I consider to be my best life.  The ndis supports individuals and families living with disabilities that impact their daily living skills meaning, we need assistance with things such as personal care, feeding, meal prep, mobility, transport, house work and accessing the community. 

My name is Deb Chilton I was born with spastic quadriplegia, which basically means cp effects my entire body, but not my intellectual ability. I was one of the first students with disability to enter into the mainstream education system in 1976. After school I was the first known person with a disability to enrol at the D.D.I.A.E now known as the University of Southern Queensland. Prior to the 1970's it was assumed students with disabilities could not learn. The Queensland CPL assumed after school I would work in their shelter workshop and refused to believe my reported academic achievements. This was simply not possible and the academic literature supported that view. 

In 1991 I completed my Bachelor of Arts and continued to turn my back on being supported by the disability sector.  In my thesis I had researched the growth of Supported Employment, but personally did not see the need to access that service myself.  I was gun hoe on Changing the World through my faith in Jesus Christ.  As a Christian my church background and lack of Christian network made my transition to Crusader for Christ difficult.  I was still a misfit but passionate that Jesus was the key to transforming lives. 

However that track halted as I faced chronic health issues for the next two decades of my life.  For me once again I experience disability but remain determined to live a 'normal life' and established great networks in my local church, making various attempts to study and find my passion.  I now know I had chronic fatigue syndrome and a non cancerous brain tumor causing havoc, seizures, hallucination and panic attacks, but diagnoses and effective treatment waited until I was 48.  Through it all my faith in Christ kept the flame alive. 

Depression was a lonely time and many days the light seemed to blow out.  I still failed to tick boxes and drifted through life looking for my calling and purpose.  By this time I was living in my own home; writing for Creative Christian Enterprises and researching my Children's book.  I spent the next 5 years writing a book, being involved in the Ipswich Poetry Feast and sitting on various committees and boards of disability service providers, receiving 10 hours of support a fortnight.  Officially, I was not disabled enough to need assistance.  Service providers did what the could to beg and borrow funding to support me to live independently, but I experienced first hand a broken system of disability care and inappropriate care.  I needed to wait sometimes until 2 pm for a shower to start my day. This made life difficult to juggle. 

Until one day it was all too much and my immune system crashed and I spent three month clinging to life. Its was gaining access to the disability support services or die.  The doctors were blunt and held me captive until the department gave me the support I needed to stay alive.  This illustrates the critical shortage of funding for the disability sector in 2012.  This is why Australia needed National Disability Insurance Scheme, without people like me had no control to direct their own future. 

In 2015 the federal government and states finally signed up to fund the ndis and the roll out of the ndis will be completed by the end of next year, for many its too late but for others it keeps the light burning.  The days of ticking the boxes to receive any type of support are over. 

My story illustrates why Australians needed a sweeping reform for the disability sector. Leading into the birth of the ndis Australians treatment of people with disabilities had been raised at the UN and Australia was pushed to address the rights of people with disabilities.  This empowered us together our collective voices to march on Canberra and demand to have a voice.  The disability care system had led to abuse and neglect of 100 000 people living with disabilities, some of these were unable to speak for themselves; to be heard as individuals we needed collectively to say to the Australian people Everybody Counts and Australians with disabilities should be given a say in their future.

Speaking at the opening of the Ipswich Area ndis Office and assisting in shaping the ndis is one of the things I am most proud of in my life's achievements. The fight for equality is far from over, the ndis is riddle with teething problems and pathways remain blocked by access issues.  Future funding of the ndis is still needing to be secured to ensure the ndis is everything we fought for and every participant has choices around how they are supported and who supports them.  Many still do not exercise their rights to challenge the system the struggles to let go of controlling their lives and others still face abused because they remain dis empowered to speak.

The founding principles of the National Disability Insurance Scheme is the right to determine how you or the person you have guardianship for want your life to look like.  This includes basic choices about where to live; who you want to live with; what school your child will attend, what early intervention programs your child accesses; who your physio will be; what disability support services you will access; who you want in your home; the right to choose your support staff or the support activities you engage in. 

The journey for every participant and those who support them begins with planning and researching how to shape their lives under the ndis. This could include family members, support workers, workmates or the blokes from the pub.  The person with the disability can choose who they want to support them on their journey and some choose the postman because that's the person they trust to advocate on their behalf. However the legal guardian must sign off on the final plan before funding is released.  

Those under the Adult Guardian must have a representative involved in their planning meeting, but the ndia can manage the participants plan on their behalf.  Regardless we need to ensure these participants choose how they want the support structure to work.  Every ndis plan is built from a participants ndis goals. These are the things the participants wants to do or how they want their week to look like. For example they might want to play golf or look for unpaid work.  For every participant the goals will be different.  To ensure the plan is based on the participants choices its best the supporters who attend the planing meeting is not representing a disability support provider.   The may offer support coordination in the second phase of planning but where we can we want to ensure it is participants or guardians if the person is under 18 making their own choices.  

I have been participating in the ndis scheme for a year and a half now and one of the goals I have been working on is improving my independence. The ndis has set aside funds so I can access to improve my daily living function.  I can use this for occupational therapy assessments; physio or exploring assisted technology options.  Through accessing physio I am standing, talking and walking more.  An increase in strength has seen a decrease in seizures. It has given me back my life!

Today I launch my Retro Diner Range. My other ndis goals are around self-directing my own support team of workers; extending my art practice and having my first solo exhibition outside of Ipswich. 

Participants goals can be around home life or accommodation; schooling, education or training; work or volunteering; friendships and relationships, improving independence, something they love, learning new things or life skills; sports or recreation.  So very few participants are going to choose to become astronauts, but a few may want to become more independent and move out of home. In choosing goals you want to be realistic; not every two year old will learn to walk and not every participant will want to start a small business.  Whatever your ndis goal make them about you and not about your supports.  Once you have your ndis plan you can choose your service providers or talk to current providers about how to achieve your goals. 

The next stage in the planning is about the 'how' to achieve your goals, its still not about choosing your supports.  Rather how will you learn to paint with oil paints and how do you want to be supported? Are you learning for fun or do you want to sell your artwork? This could involve education or training; or you might want to do this with a support service you will access. Here you want to fill in the daily activities you will engage in.  So supports are no longer about your disabilities, but the things you enjoy doing.

For some participants and families there is one more choice to complete the planning meeting. Who do you want to manage you plan and funding? The ndia; someone else or do you want to do it yourself.  You need to discuss with your supporters; family and planner ways you can achieve this and what supports you will need. I am self managing and directly engage my own workers, but I access other things like assessments for equipment through service providers. 

The ndis is bringing new flexibility and options to the lives of participants, but its ok to leave things as they are too.  For some people change brings disruption to their lives.  The really neat thing about the ndis is you are never locked in and you can always change your mind.  I was sneaky and even wrote this into my first plan. I had a three year plan to gradually do more of administrating my plan myself and that is really working well for me and I am growing in confidence and independence and essentially that is what the ndis was designed to do. 

Participants who are more autonomous now have greater flexibility in the way their supports can be structured. Those who self-manage can even use non ndis providers and not be locked into service agreements. So years after wanting to find the right box and be square, boxes are finally irrelevant and this is the most freeing experience of my life,  but I still want to change the world!