Saturday, May 19, 2018

ndis - The art of self-directing.


Visiting Aspire Gallery for
Blank & White Exhibition

Under the ndis participants can now engage their own support workers in a number of ways.  The ndis can really be a world of opportunities full of new possibilities if you are prepared to do some leg work.

In my last post I shared the keys to preparing for the ndis. Here are my tips for preparing for the ndis.

Pre-planning

  1. Map your current network - friends, family, support workers, services and groups you are involved in.
  2. Set your ndis goals - these are the things and activities you want the ndis to support you to do.  Supports include, equipment; modicifations; therapies, in-home support, respite care, community access supports and programs, accommodation and job training.
  3. Writing you ndis plan and goals - ndis plan's are about the participant and their aspirations for the future.  While family, friends, work mates, support staff and service coordinators can assist in the pre-planning progress, the plan and the supports need to directed by the participant or guardian. 
  4. Identify the gaps in your network.  e.g. participant has no support or planned activities on Thursdays.  Can this time be used to work on one of the participants goals and what type of support would be needed?
  5. Being clear on the life you as the participant or family want to live with assist you to advocate during your planning meeting. e.g. We want to continue to live as a family unit in our own home, and these are the ways we want to achieve this goal. a) respite care for our son 2 days a week, (son will attend day centre based activities 2 days a week), (b) support to assist with person care in the mornings 5 weekdays. (c) time for our son to access the community with a support person.  This is what will make life more enjoyable.
  6. Don't make you plan about money, buying hours or services you plan to access make the plan about the participant.
  7. Know and understand the ndis landscape and language.  Understand how service providers operate and which ones will make the participants goals achievable. 
  8. Select how the ndis plan will be administered a) the ndis; b) host provider; c) self-manage.
  9. If you or the ndis are not administrating you plan select who will host your funding and who will assist with the administration work.
  10. Select the other services you want to use and/or engage your own support team.




Self-managing



This is where you determine how you want to be supported; the times you require that support; how often you require certain types of support and who will support you.  You are responsible for how your budget is spent and who will report back how you've achieved your ndis goals. 



If you self-manage and/or your direct supports, some of your choices are:- 

  • To use an ndis approved support provider services.
  • Choose between using one support provider or several support providers.
  • You can also choose to use a genetic provider e.g. the physio down the road or a home maintenance services which are accessible to everyone.
  • Engage your own team of support workers, through a self-direct service provider.
  • Engage support workers with their own ABN known as contractors.
  • Apply for your own ABN and self direct supports and recruit and hire your own support team.
  • Or use a combination of these options.


My journey 

From the outset I determined to self-manage my own plan. I am a visual artists and published author who has in the past been a Board Member of a disability support service.  The ndis agreed I had the skills to undertake this responsibility. 

Previously I had been receiving direct support from 4 services and other supports from another 3 services. My transitioning to the ndis was a  chance have more control over who was coming in and out of my home and at what time. 



Previously I had had 16 to 18 different workers through my home in a fortnight period.  Once I transitioned to the ndis I was able to  determined my own supports and the times I would access those support. 

Ultimately my supports needed to work around my art practises as an emerging visual artists.  This was my primary ndis goal during my first ndis plan. 

I still wanted the protect I thought support service could provide through their policies and procedures.  However, I soon discovered many providers inflexible in the times they were able to provide supports.  Services are rightly determine to provide their staff with good working conditions and thus offer staff back to back shifts during their working day. Meaning participants need to be flexible with the times they recieve support.  Not real conjuctive to running a visual art pratice.

I remained with one support service provider, to provide all my direct support needs. This included in-home and community access support.  Previously I not been allowed to travel in staff cars and needed to rely on Taxis for transport, this make planning my medical appointments difficult.  Before signing my service agreement, I was assured this would change under the ndis. Well that never quiet got that part of the service agreement off the ground. I soon discovered my provider didn't have enough support workers to cover the hours I could access under the ndis.

Eventually I set out to hire my own workers and self-direct my own supports.  I discovered their was several ways I could do this and still have the protect of a provider for things like policies and procedures and insurance. My past experience of care and support workers is one of dread.  The thought of going out on my own and having no fall back was terrifying. 

Historically we come from a medical model of 'care' the legacy of institutionalization.  The system of providing 'care' which become known as 'support' implied people with disabilities needed looking after, protecting and company.  It was never envisions that individuals with disabilities could make valuable contribution to the communities In which they live.

ndis recognizes that reality.  This was clearly dread from organizations who work form the medical mode.  'Who will protect, who is the appointed umpire?'  Workers who have support in the past have come from the model of administration.  Their lived experienced lead them to think the were in a caring role.  The is not the care I need nor want to purchase under the ndis. 

I thought long and hard about the type of worker I was looking for. I asked myself 'what was the common traits my favourite workers had?'

What I was looking for was:-
  • Workers who respected me as a working member of my community.
  • Workers who respected that their work place was my home and this reflected my values and lifestyle. 
  • Workers who knew that they would be respected and valued by me but would respect the professional boundaries of the role. 
  • Not workers, 'who thought the knew what their role was'; not workers; 'seeking to make my life better'; and certainly not workers who would wrap me in cotton wool',but workers who would empower me to reach my goals.

My ndis first plan goals were around extending my visual art practise.  I am also a passionate advocate for people with disabilities and their rights, especially their rights to equal opportunities under the law.  Despite the introduction of the ndis people with disabilities do not have a powerful voice to remind the community that Every Australian Counts.  Sadly may people with disabilities are unable to take part in the democracy system and nor can the make a complaint.  

People with disabilities have been made to feel grateful for any assistance they received, something care workers still want to feel even through they are paid.  During one the interviews I was informed that the candidate would be providing companionship.  I had to politely let the person know, I do not paid my friends and I have plenty of them.  She was not successful in gaining work as my support worker. 



My process lead me to three young women with their own ambitious and creative talents.  I was keen that applicants knew I was an artists and build my art practice was my ndis goal.  None of my workers have previously worked in the disability sector and each of them showed a willingness to learn.  Not surprising my team members have similar values to myself. 

Some said I would know the right people when I came across them because I knew what I was looking for and that came through in my advertisement.  In the end I admitted I did have some limitations due to my disability so I used a recruitment agency to screen the applications and protect my identify. 

Each of the 3 ladies support me very differently.  One providers in-home support and personal care; one is engaged as my studio support person and is engaged on a contract and the other leads this team and coordinators well. I have a fourth team member who has previously worker with me whom I have engaged through 'Hire-up'. These workers have the own ABN and can be engaged on a primate or causal biases.  



The team I am currently self-directing is made up of two employees who work for a service provider who provides avenues for ndis participants to self-direct; One team member who I contact to support me in my art studio; those who I employ through agency on a causal basis. 

The way I self-manage and self-direct is only one of the many ways open to participants of the ndis.  We no longer need to fit into a service model, we can now create our own. 


I'm doing this my own way, under the ndis. 

Friday, May 18, 2018

Your ndis pathway success is all in the planning!

It's all in the planning!



Australians with disabilities are asking the Federal Government to 'fund it & fix it', when it comes to the National Disability Insurance Scheme known as the ndis. This is the new way the government promised to provide people with disabilities with the support and assistance to participate in the community. However too many participants and their families are finding ndis pathways difficult to navigate, service agreements hard to follow and lenghtly delays. ndis plans and budgets are based on the participants goals or what they want their daily lives to look like.



Instead of a simplify system to navigate supports, therapies and equipment, participants are finding plans that do not meet their needs, delays in processing their reviews, delays allowing them to access support services and vital equipment and medical supplies. My first hand delay has been accessing a new powerchair to access art community projects. 


My first plan finishes on June 26th and I am still using 'the beast' to get around the house, to do so safely I need to remove the foot plates.  The pathway to this point in time has been finding a provider to do my assessments, getting hold of the right person to do the assessment, meeting with supplies to test driver chairs, agreements expiring, re-negation the original agreement and waiting for reports to be submitted to ndis.  That was completed in December, both the motors on my chair need replacing and talking to a sales representative on the weekend I found out they're just getting orders for quotes lodged with the ndis in September.



On of the biggest things that needs 'fixing' is waiting for plan reviews and appeal processes to take place.  This will delay your access to funding, however if you plan is completed probably in the first place then there is no need to request a review.  Getting the plan right is both the responsibility of the participant and the planner.

The planners has tools to help them asses you needs, but you are responsible for providing the correct information and clearly articulating you goals and the activities you want to engage in. The ndis plan is about the participant, however others can be involved in the planning processes, for example family members, carers and support workers. Your plan is about you as the participant not the service providers or other services you are wanting to access. Hopefully as you read on the reason for this will make sense. 



However you should always remember you do have the right to request a reviews if you do not think your ndis plan will meet your needs. 


The key ingredient to a plan that suits the participants needs seems to be pre-planning.  This is preparation the participants do before they meet with their planner. The ndis plan is based on the goals identified by the participants and their families. Not their disabilities; what the participant can't do; nor the services their hoping to access. 

When we think about goals we're really talking about the things that are most important to the participants and what the would like their day to day life to look like. For some participants this will be exactly the same as what life looks like now.  So the key for them and their families is to pull out the aspects of their lives that will allow that to happen.  

If you are focusing on money, what hours you can purchase and where to make those purchases, then your not planning for the ndis. The services and supplies you can purchase under the ndis are paid for from what is known as 'core funding' or 'improved daily living'. The participants life is more than just meeting the basic needs. To take a all or life approach to support then we need end goals.  Service A might be a great fit now . . . however it may not fit in 15 years time.  So under the ndis you want to be thinking about what comes next.



Key one to success is to understand the ndis landscape.  This includes:-
  • knowing the services available in your area. 
  • knowing how different services can support you to reach your goals.
  • knowing 'ndis' language.
  • using this information to help guide you path.
An outline of the ndis landscape is available on the website with a glossy of terms you should familiarized yourself with. Not only will this assist you when you meet with your planner, but it will help you to talk to others about how they are or intending to tackle the ndis. 

You should not base you ndis goals on a service provider's objectives; remember that service provider may not be round in two, three or four years time.  The ndis is a great opportunity to map out your own pathway . . .I did it my way!

I DID IT MY WAY!

If your plan is written your way, then it should be simpler to put into action and your be equipping yourself better to advocate for you needs. 

Key Two to success in to map your current network system or who helps you to do what now?
  • Who are your natural supports systems, what support do they provide and how may hours dose this make up in your week. i.e. you live with your family and they assist you with daily living tasks for 30 hours per week.
  • What supports do you access now?  Not service providers - supports are things like personal care supports; in-home support; respite care; assistance with transport and acconomdation; help to access the community.  
  • List all mobility aids; communication needs, modifications. 
  • What other meaningful interactions in your community do you have.  Sporting teams, clubs, art & craft groups.
These are the things that help paint a picture of what life looks life now.  You could also ask a family member; friend or support worker to assist you to create something visual to help you communicate what you're life looks like when you and your supporters meet with your ndis planner.


Today my life looks like:-

Example:

I live with my parent and big brother.  My brother and I like to play sport, attend footy pratice with my brother and watch his team play on most weekends.  My dad is a teacher and mum is a cleaning when she is not helping me.  I attend a day-service two days a week to give mum a break and have 5 hours community access support to do some personal shopping and go walking to keep fit.  I walk with my support worker twice a week and my dad or brother on other day.  I often go with my brother to footy practice.

Without naming providers or specific daily routines you and start to pull out the key things in you life.  This is how to make you plan about you and your goals.  Most participants find they are able to access more support under the ndis.  What that looks like will be your choice and not up to a support provider or coordinator to decide. . . .YES! If you want it can be similar to how it looks now, you can still go to the movies with your support worker. 

Key three to success is mapping out your future.
  • You can set goals around any area of your life you want.  School, training, education, sport, transportation, work, accommodation, friendships, fitness, creativity or community interactions.  All these are independent of any support service you may choose to access under ndis.
  • You might currently live with your family and be looking at moving out of home.  Right now you do not access accommodation support so this might be something you need to build into you ndis plan  or future plans.
  • So goals are the things you want to do or the way you want your like to look.  You will have longer term goals like to find voluntary work and short term goals such as learn new skills. 
  • Your daily activities and the support you need are what will make up your ndis plan and budget.  'Supports' includes services provided by support services e.g. respite care, inhome support, centre based care,;  mobility and communication devices; modifications to home & car; therapies.
  • So you want to start thinking about where the gaps in your currents supports are and how those gaps can be filled.
Key four to success is called 'Your Plan Management'.

Until now participants and their families have had little input into the way the are assisted.  There are three ways to manage your ndis plan, with in each option there are many different choices on how you can set-up the administration of your plan.  Plan management is around your budget, expenditure, payments and reporting back to the ndis.

The basics
  • Plan managed by the ndis
  • Plan managed by a 'host fund provider'
  • Self manage you own plan

How you want you plan managed will be discussed at your planning meeting and will form part of your ndis plan. So this is something you should decide before attending the planning meeting.  However you will need to prove you have the ability to have your plan managed in this way.

Regardless of 'how' you chose to have your plan managed the ndis must provide all costs associated with plan management.

Option 1 - Plan Management by ndis.

If you have previously received support or accessed equipment and supplies through MASS or its equivalent then the budget, paying invoices and reporting is much the same as not.  However the ndis will not tell you a service you have to use.  The service, types of supports and when you receive your supports is now your choice.

Option 2 - Plan Management through a 'Funds Host Provider'

This means you choose a 'host' to hold you funds, make payments and report back to the ndis on you behalf.  'A Host Fund Provider' may also be your direct support service provider.  Larger support service providers, provide a whole range of services and depending on your goals and support needs they may be able to offer you a complete package.

If you 'host' provider will also be delivering some of your direct service needs, be aware they may guide you towards the services the provide. So you may want to chose a 'host' who only provides administration services.  You may also want to chose a host funds provider if you intend to self-manage your own plan.

Option 3 - Self-Managing Your Own Plan

Self-managing ans self-directing are two different things. You can chose to do one or the other or both. Self management involves decisions around how individual areas of your budget will be broken-up.  For example what you will spend on direct supports, assisted technology and consumables.  You will also be responsible for the payment of all invoicing. 

You can self-manage through buying supports from a provider(s) or self-directing your own supports.  Self-directing means you will be engaging supports out-side of traditional support providers; engaging your own support staff and suppliers.  Those who are self-managing do not have to use ndis providers, they may chose to use generic services like the physio down the road or a cleaning service to provide domestic services. 

Under self-managing you can do everything yourself or ask the ndis to pay someone to support you to self-manage your plan. I am currently partially self-managing allowing me to self-direct my own supports. There are a number of different ways you can engage your own support workers and it is important you understand you legal responsible under each of these.

If you elect to engage your own support workers you may become an employer and thus need to meet all legal and taxation  responsibilities. 

Ways you can engage your own support team

  • Self-manage your support team through setting-up your own business. Their are data-bases to help you set up your pay roll.
  • Use a service provider that has self-directing services.
  • Engage support workers with their own ABN.  These means they are responsible for their own insurances and will provide an invoice for payment just like other providers. 
This is in no way an exhausted list on how to engage your own support workers. 

If you intend to engage a host provider; plan manager; self-direct or self-manger. Reaching and developing a model to direct under should be part of your pre-planning process.

Step One

Talk to others about how then intend to have there plans managing and get recommendations on host providers, plan managers, support workers in your area.

Step Two

Talk to 'host fund providers' including current providers and find out what they have to offer and what your responsibility.  Rate how suitable they might be to meeting your needs.

If you intend to self-manage find someone who may be able to assist you to develop a model of self-managing or mentor you as you set-up both your self-managing and self-directed models.


Developing a model for self-directing my supports

One thing I tried is devising a model of self-management that allows me to gradual take more self-management responsibilities as I progressed. In my first plan I asked for a Plan Manager to assist me to self-manage my plan.  Intitally I choose to access all my direct supports through a lager support provider.  My Plan Manager worked for a separate support service. I found this wasn't working very well for me so I looked at starting to self-direct through engaging my own workers.

Before I started to establish my own team, I thought a lot about how much time I wanted to put into this considering I already own my own business and my ndis goal to expand my art practise. I though about my responsibilities as an employer, insurance issues and pay roll and decided I wasn't ready to employ my own workers, I wanted the protection for me and my workers under what a larger company could offer.

I engaged a provider that allowed me to self-direct.  This gave me several options and I elected for my workers to be employed by the direct service provider.  I recruited, did safety checks and training my own staff.  I was the first person to chose this method with the company thus I am daubed 'the ginnie pig'.  I happy to report both parties are experiencing a smooth working relationship.

With my workers I elected a team leader, who assists me with the administration responsibilities of self-directing such as rosters, timesheets, and invoices.   I had intended to engage three inhome support workers as well.  However I only found on suitable candidate in the end,  I hoped my existing support provider would provide back up and fill the shifts my team couldn't.  That plan didn't work out in the end either.


I had a late response to the job ad I put on seek through using a recruitment service.  Reading the application sounded like this person would tick all the boxes except one.  It was  major box, how far she lived from me,  I knew she would not accept two hour shifts on a support workers pay rate.

So I decided to redo my job descriptions and create a third role.  I offered her a job as my studio support person meaning I needed her to be her for longer shifts.  My studio support person is paid under a private contract allowing me to pay her for the art knowledge she brings to the role.






With the major support service not being a viable option I needed to find alternative back up. For when my team members take leave. So this week I've registered with Hire-up and Better Caring.  Tonight I found a causal worker to join the team through one of these online platforms. I can also advertise other vacant shifts as the arise and cover other team members when they take leave.  

When it comes to ndis pathways and self-directing the biggest asset is the ability to be flexible. Accept that not all your choices will workout and you may need to try different models of self-managing before you fine the right one for you.

Step Three -Mapping out potential plan management model

Think about how you like to be supported and your current support needs.  Start to develop job descriptions.

Look at online platforms through which you can self-direct. 

Taking your first step along the ndis journey

Once you plan is approved and you have discussed with your planner how each section of your budget will work,

If you are not happy with your ndis plan or there is something you don't understand it is at this meeting you need to discuss this with your planner.  If you decide to challenge your plan and as for a review this may result in delays in being able to access your support. 


If the ndis is not the administrator of your plan, the first thing you need to action is making an agreement with the people who will be assisting you to administer you plan.  Until this is confirmed you can not access any of your funding. 

Just because your ndis plan has commenced doesn't mean you need to stop immediately accessing services you are currently using.  You do need to give them the date your plan commenced and how to invoice any supports provided after the commencing your approved plan.  If you intend to cease accessing that service at any stage you have an obligation to let them know. 

You can ask them for an interim service agreement. A service agreement with a support provider can be for any amount of time and bridging agreements can be extending if you need more time. This will give you time to meet with other service providers you are thinking about accessing. If you are thinking about also accessing a service you not previously used, it is wise to talk to other participants who have used that service.  Shop around to find the service that best suits your needs. A full list of service providers can be found on the ndis website.

However hopefully by this point you have a short list of providers you want more information about.  Maybe the first thing you want to set-up are the services you've not been previously able to access like therapies. If these are through ndis providers this will give you practice to navigate a service agreement. 

So what is a service agreement and why do you need one?

A service agreement is a document between you the participant (or family member) and a company or organization who provides you with any supports for your ndis.  If you have previously received support from a provider then you would of signed a service agreement in the past.

The service agreement sets out the services that will be provided. For example: 12 hours of in-home support per week; attending day service 2 days a week as well as providing transport.  Under the ndis all service providers must provide a written quote so you know how much money to set aside for these supports service.  Service Providers will request proof of your ability to pay.  Your host fund provider or the person managing your funding can assist you.  If you are self-managing you will need to do this yourself.

The amount of money for the services spell out in the service agreement should be Quintin so you can not spend it on other things.  This information is feed into the ndis portal after you sign the service provider. 

Previously it was standard for service agreements to be for a 12 month period.  Most services will want the same terms under the ndis, however the landscape has changed and you can not state the period of the agreement.  If you have not access this type of support before or you are new to a provider then you may want a shorter service agreement.  

Once all your service agreements are looked in and your ndis funds are quietened the your budget is set for the duration of your plan. This is a difficult process to navigated thus, being firm on your goals and the types of activities you want to engage in will assist you to decide if a service is a good fit for you.

If you are intending to self-direct, depending on the model and 'how' your support workers are engaged you may need to write up your own service agreements.  You will find plenty of service agreement templates online. 




The pathways to the ndis are complex and not smooth to roll along. The ndis is still very much a structure under construction.  The are problems that need fixing and pwd's have the right to see that funding is fixed not fear funding cuts with every budget. The ndis is your opportunity to have your support your way.  To this you need to be preparing to work with your planner to ensure that happens.



Monday, May 14, 2018

Stand Up for Our Community


What makes a community?

Our former many would say that the 'heart and soul' for a community is event when creative people come together to create an event, work of art, song, poem or stage performance. Currently a blanket of cloud sits over Ipswich City Council with multiple charges being brought against several administration staff and councils.  Despite no convictions the Ipswich Council has lost the trust of its community.  However is this how a community acts? And is this the 'real communities voice being herd?

I confess not known all the facts I took felt frustrated and dishearten.  Let the lot of them go and have fresh elections.  The honest community working councilors will be left standing, 'I told myself!'  However I've been wrong on that account before and my opinion still pretty much makes the councilors guilty by association and why should honest, hardworking councilors who genuinely cares about their residents, go through the pain and the expense of another election - and we are yet to discover what the truth is. 

Sure, I am not going to argue their are a few rotten eggs, but why toss out the good ones with them.  The legal system will ask the officials to give account for their actions, until then we have a local community than needs love and nurturing. How does this community come together, well . . . . . its through the council of course. 


Creativity connects us all!

The Queensland Government has asked Ipswich City Council to give cause why they shouldn't be dismissed, having lost the trust of members their community? Which members are being heard and how many is their number? 

What a community needs is to come together when
things get though.  



Remember the mud army and how together we cleaned the city and resorted the broken.  Our community is broken again, its just less visual, unless to see it etched on council employees or local business waiting on Ipswich CBD redevelopments to bring trade back to their stores. Unless these are the people who you worked along side year after year.

These are the faces right now I see as I wheel down the street, the same people who built this community, Arttime Supplies, Reto Dinner, Forth Child, Articulated Framing, Coronation Hotel, Studio 118; Studio, The Catrus Bar.  Our councilors are not the only jobs on the line here.

If the Queensland administrators walk in, every council project could be on hold while every dollar and cent of councils budget needs to be accounted for.  The redevelopment of our mall who local traitors are counting on is at risk. 

Demonacry in Ipswich dies and we become run by state government who has its only history of misconduct . At no time did the Federal Government attempt to dissolve the Parliament.  The community of Ipswich do not need administrators to restore honesty to the council chambers, all that is needed is a higher degree of accountability and a chamber of councilors who work closely with its residents to restore their trust. 


As a artists who travels across Australia I marvel at the level of community involvement our councilors have.  The are at our school fates, nursing homes, senior and disabilities expos, sporting events, school speech nights, Rotary and Lion's events, cultural events and exhibition opening.  When I talk with other artists I ask how their local council have viewed their project proposal. 

The arts? No our local council has no interested in the arts. Just like the Historical Society, Ipswich Library, Schools, Sporting clubs, Service Clubs and Local Environments Projects our council is investing in the Arts to grow tourism and the local economic.  Sure we need roads and local works; we need our waste collected and water ways kept clean.  How the heart and soul of the community in held in our creative community.


Home of the Ipswich Art Society


The Ipswich Festival is where we see the growth of community spirit.  This year we saw one of the largest turn outs for our street parade. It was one of the largest community events I ever attending. A festival driven by the Ipswich Chamber of Commerce and the Ipswich Arts Community.  If you've ever being involved in anyway with the Ipswich Festivals you would know the thousands of volunteer hours it tasks to create this event. This event takes a community to create and drive its development and a council to provide leadership to make it the success and injection into the local community. Years of community participation and monument are now put at risk, if the administrators move into Ipswich and our conductors are removed.  

I wonder which community voices are being heard by the media and the Queensland Governments, because all I see on the faces of my friends is the strain the threat of adminstators bring. Every council and governments has faced the situation our councils finds itself in at present. Why shouldn't the Ipswich Council undergo the same Judaical system, . . .  innocent until proven guilty.

Want to experience our community? Stand up and start fighting for our council and our right to decide our future.



Tuesday, May 8, 2018

Moving on with the ndis


After several months of trying to work with a service provider as of Saturday morning I will be at the helm of directing my own supports. These means in addition to self-managing I am also directly engaging my own support workers. 

My team current consists of a team leader who assist with admin and rostering.  My in-home support worker and my studio support person.  We (me and my team leader) will be recruiting a forth team member in the meantime I am setting up an account with hire-up. 


In addition to preparing to deliver artwork for juding in the Brisbane Rotary Clubs Art Show on Saturday, my team leader has been assisting me with a back log of personal and ndis paperwork, a long and painful process.  I guess up next will be tax time, but together me and my team leader have sorted through all my receipts and photocopied them.

Having each of my team responsible for one area has resulted in a streamline service delivery and together in the mist of kaios, missing quotes and invoices, lack of support from my provider we have manage to tidy and organize years of clutter out going staff have said, 'its nice of them to do that for you.'  umm! I paid for them to organise and tidy my home.  This was obvious not  cleaning was not part of  what support wokers consider astheir role. 


So clearly its time to move on and start a new chapter in my life and I am excited by the opportunities that creates. Initially I worried about the lack of security and back-up that comes with self-directing.  Support providers would have you believe it to risky to go it alone.  These same providers have failed to deliver the support outlined in agreements.

Services are use to being in control and not being answerable when this go pair shaped. Sure the ndis is not a smooth journey for anyone and I've highlight the flaws in the ndis and navigating the pathways, but it inexcusable for services not to deliver while maintaining participants are not to be trusted to pay for their supports. 


I want to deliver a safe and secure environment for my team and provide security and cover for myself. So I have chosen to access a self-directing support service and a Plan Manager. This model of self-management may not be suitable for your family or their needs. If you are thinking of traveling down this road, I recommend you talk to others who are self-directing and are intending too.

For those who self-manage there are resources and training available.  You LAC should be able to help you locate these. Participants having choice and control in not about them making demands, bur rather participants holding supplies and service accountable.

Participants have the right to complain and advocate for change. It is your right as a consumer to make a complaint if your needs are not meet, services are not being delivered or the service is bullying you to accept status quo.  Making complaints and advocating for our rights as people with disabilities and their careers is the only way to improve service delivery.  If you are struggling with this area of the ndis then find an advocate or use an advocacy service.  Regardless of how your funds are being administrated these are your rights. 

Service delivery through providers is not the only issues for accessing funding under the ndis and more needs to be done to assist participants to understanding how the plans work and how funding can be spent.


My other goal for my current ndis plan was to purchase a chair more suitable for my art practise. This too has been distarious. I am still waiting for my chair to be approved and have a quote for $2500 to be approved to replace the moters in my current chair,  Because I've been responsible I have money left to hire a chair while I wait to see if my new chair is approved. 

We were promised this would not occur under the ndis.  This has been a major disappointment.  I do think the additional wear n tear on my chair due to lack of transport assistance has lead to the demise of the motors.

No matter how prepared or organized we think we are, life doesn't follow a ndis plan. Things go wrong, and injuries and illness occur.  The ndis is only part of the answer for improving the lives of those with disabilities.

It is vital we continue to voice the need for further reform and secure funding going forward.







Tuesday, May 1, 2018

Art 4 Epilepsy



Epilepsy is one of the worlds most common neurological disorders.  70% of those with epilepsy do not have their seizures controlled by medication or other treatments. As well as the stigma  many myths around seizures and the first-aid required exist. Seizures are not always caused be epilepsy. Many people experience one off seizures due to illness or injury.

If someone had a seizure would you know what to do? You can find the facts at Epilepsy Auction Australia. Epilepsy Action Australia provide support to people living with Epilepsy and their families as well as a number of community education programs. 

During May they are hosting a online art auction to raise funds to continue to be able to provide these services. Emerging and professional artists across Australia have donated work you can bid on during May. Including me. 


Purple Picnic
Acrylic 2014
with black frame

Perhaps 'Dolly' is explaining to 'Teady' what to do if someone has a seizure.  To bid on some fabulous artwork visit the auction website.

ABOUT ME


I was born with cp which can be associate with epilepsy, however in my case I have Alice In Wonderland Syndrome otherwise known as Todd's Syndrome.  I have held many different roles over the years including youth work, Christian Church leadership, Community Boards, Author and Poet and now Artist! Recently I received a Highly Commended in the Ipswich Art Awards for 'I Fell Down The Rabbit Hole'.

I am a regular contributor to the Brisbane Rotary Art Fundraiser which opens on the 14th May, and a member of Aspire Gallery in Brisbane where I regularly exhibit my work. 

Besides art my other passion is advocating for people with disabilities and raising awareness about disabilities and the issues we living face.  So participating in the Art for Epilepsy fundraiser makes perfect sense.

You can link on my links on the side-bar to find out more about me or my artwork on you can use the contact box for further inquires. 


Saturday, April 28, 2018

Using my artwork to support education and awareness

Art For Epilepsy 


Art 4 Epilepsy Action during the month of May opens for bids tomorrow.  Emerging and established artists from across Australia have donate artwork to raise funds for Epilepsy Action Australia. To view the artworks click on the website and follow the links.

Epilepsy Action Australia supports people with epilepsy and their families across Australia together with education and awareness programs.  I have donated this piece to support their on going work.

Despite being the world most common neurological disorder the are many misconceptions surrounding the disorder.  Epilepsy Action provides education to organizations, workplace and schools to dispel the myths as well as specific seizure first-aid. 




There are over 40 different types of epilepsy with gal mal or fitting being the most widely known.  Anyone can have a seizure during their life time.  This is not always a result of epilepsy.  Seizures can be associated with illness or brain trauma or point to a more serious condition such as brain tumor. It can also accompany other disorders and disabilities, such as cerebral palsy. 




'I kinda think it neat I have epilepsy as it proof I have a brain and it is functioning.   I often wonder about other members of the general public.

The most famous person who suffered from epilepsy is of course Julia Ceasure, from with the name 'seziure' is deviled.

I have experienced seizures in different forms for over 20 years. Abnormal seizure activity can be picked up on a EEG and in 70 % percent of cases be controlled by medication.  Other treatment such as surgery have been developed. I however have a normal  EEG and my seizures have never been fully controlled.  For many years my seizures were put down to stress. 

While stress definitely contributes to my seizures, I have a tumor in my frontal lobe, and last year it was finally confirmed as the cause.  My epilepsy is a result of 'Alice in Wonderland Syndrome' and seizures are just one of the troubling symptoms.  My seizures can cause dehydration, affect my heart rate and temporary paralysis.  Fatigue make these symptoms more visable.



The frequency of my seizures mean I am unemployable and I find epilepsy is more disabling than the cp which everyone can see and assumes affects my intellect.  Despite the many challengers life has put in my path, I enjoy a full and rewarding life as an artist and disability advocate.

Would you know what to do if someone had a seizure?




In Australia the number to call is 000

If the seizure last more than five minutes
Is followed by another seizure
Occurs in water or while eating
The person is also a diabetic 
Or not a known epileptic


Call 000

Do not restrain them or put anything in the mouth as this may cause injury.

If you would like more information
visit the Epilepsy Action Australia Website.



 Most people with epilepsy live normal lives.
'I may have epilepsy but epilepsy does not have me!'