ndis bumps in the road!

Much of my week was spent preparing for my commencement to begin self-directing my own supports, through engaging my own support team.  Like everything there have been a few hickups. Thar's why you need to ensure you have plan B up your sleeve. 

I didn't think you'd want to see a photo of me doing paperwork, rosters and training manuals, so above is a photo of Ashes who was helping me stock take my art portfilo.  This was one of a few bumps for this week as the event this work was heading too was postponed. 

Next week the Ipswich Festival is on and this is my entry for Arttime's Obnoxious Organe. My direct support hours this week have been spent working towards expanding my visual art practice. I have work going into two competitions for the festival and have been preparing my first delivery of artwork to Aspire Gallery for 2018.

After selecting a team of 4 talent ladies to support me to achieve my ndis goals, one has decided she doesn't have the time to support me. I also picked up a mistake in one of the employment contracts and need to renegotiate that agreement.  At the same time my Plan Manager is on extended leave and I hoping my books are still balancing. The person supporting me to self-direct said my maths makes sense.

Well there's not much I can do about that bump in the road until my plan manager returns.  Besides I still need to finalize one agreement and the figures could change again. So there is more to self-managing and self-directing than choosing your own support team.  However there is plenty of support out their if that's what you choose to do!

Remember the ndis is designed to enable you to fully participate in your local community and to live a life reflective of your peers.  The week the Queen's Commonwealth Games Barton visited Ipswich and the local Ipswich Community came out to support our local community members who give themselves tirelessly to the community in so many ways.  I caught up with Peter Tully at the end of his leg.

Peter and his wife head up Disability Community Awareness and I try to support them as best I can and assist with the administration of the facebook page.  A community is not a geological area of buildings that line its streets. It is a group of people who connect together for a common purpose, in this case to champion and advocate for the rights of people living with disabilities and their families. 

As the ndis continues to roll out, some people are experiencing more bumps in the road than others. With questions now being asked about the blow out in costs and the need to fund formal advocacy programs if the ndis is in place to protect people's with disabilities rights.  This statement alone shows why funding needs to continue.  Most people with disabilities still live below the poverty line and barriers for employment are yet to be tackled.

This week Peter and Linda travelled to Canberra to discussion the many problems participants are experiencing with the roll of the ndis. Every Australian Counts launched a new campaign 'FIX IT AND FUND IT!' To achieve this week need our Every Australia Counts champion to be advocating on our behalf.

In terms of the ndis we need to continue to look at it as a stepping stone that if its done correctly will pay for itself. As people with disabilities and their families a fully supported to come out into the community to engage through education, employment and supporting their communities through voluntary roles.  This over time will save the government money as well as give participants income to invest in the local community. 

My individual support needs along created 4 new jobs that didn't previously exist.  I personally should  now have more energy to invest in the community.

This includes brighten the community through decorating rocks and hiding them in local play grounds for others to discover!

Why is the world turning purple?

Tomorrow is Purple Day!

International Purple Day raises awareness of epilepsy and seizure disorders. Despite being the world's most common neurological disorder, epilepsy still lurks in the shadow and those with the conditions are still afraid to tell others of the condition.  I like to tell others that is not my CP that disables me, but the stigma around epilepsy and its unpredictability.

My first purple day 6 years ago!

This is the first time in six years I've not hosted my own purple day event.  This year I am one of many artists around Austarlia involved in a Art 4 Epilepsy fundraiser. 

I find it amassing that Purple Day was founded by a 12 year old school girl who asked the class mates to ware purple to stand out with her.  They did in fact her whole community did!  My first purple day six year ago, in Ipswich no one had even heard of purple day, tomorrow night the Ipswich City Council is paying to light the Civic Centre purple, Casidy is proof the one person can bring change to the world.

Purple Day 2017!

I'll be wearing purple tomorrow with Casidy!  

Arts training and employment & the ndis

"Once my art is hanging on the gallery wall

my disability becomes invisible."

Judith Baker, 2014

Judith is currently the sectary of the Ipswich Art Society.  She has been involved is the Ipswich Arts Community for over 30 years.  She is an author, poet and visual artists living with disability.  When it comes to the arts in Ipswich, Judy's disability has proven no barrier. 

Judy lives in the beautiful historical community in Rosewood.  I first meet her when she was researching her book 'Babies of Walloon'. The poem was penned by Henri Lawson, and is the story of two sisters who tragically drowned in a dam on the family's property.

Before then she was an established visual artists who had been exhibiting her artwork in local art show societies across the Lockyer Valera and Ipswich region.  Our arts community and the Rosewood community are richer for her decatition to the arts. 

In 2012 I was selected to be part of the Leaders For Tomorrow Program, as part of my program I want to mentor others living with disabilities to take leadership roles.  I was then the Pristant of Community Access Transitional Services, but considered myself to live, work and play in mainstream society.

I had very little contact with other people with disabilities apart from a few close firends I'd meet at various stages in my life. Art become a way to connect with the disability community at a personal level.

A very early piece of my artwork

Supported by Access Arts I founded ArtISability, my intend was to created a professional development program to foster the development of visual artists living with disabilities.  At the time I was a writer that enjoyed doodling and new little about that art world or the Ipswich art community. However I new Judy and she had already been teaching art so naturally she was the first person I shared my vision with.

ArtISability began with a team that was disability lead from its incepition.  However six years later I sit here struggling to assist the Ipswich community that people with disabilities can work as professional artist's and how artwork belongs on the walls of galleries across Australia. I know this possibility, have just hosted my third solo exhibition.

My Cat Prints on exhibit at

Aspire Gallery in Brisbane.

I also come back to what Judith told the first intake of artists in the ArtISability program.  One hung there is no indication of my disability.  I have also been exhibiting along side one of the participants in the ArtISability Program another artists living with disability to join the ranks of emerging artists in the Ipswich region. 

Larry Stummer 2017

Intitally the program was successful and Larry's growth shows that, but too quickly I found ArtISability was connected to the disability sector not the Arts Community, I feel the last three years has been in no man's land, many believe when it comes to art is best fits Art for Well being when it comes to people with disabilities. 

The introduction of the ndis (National Disability Insurance Scheme) was to support people and their families to achieve their goals and for an professional artists that is to sell their artwork.  However we all know that being an artists has never been considered a legitimate career. 

I wasn't allowed to take art at school because it was never going to help me get a job.  Work in the arts industry is the only paid employment I ever had. However if I did not have my dsp because my epilepsy is uncontroled by medication I may of needed a 'day job' to put food on the table. 

Despite over 60% of people living witg disabilites shown an active interest in the creative arts: music; dance; performace; writing and the visual artist, their are only a few artists living with disabilities who the Australia Artbank. Across the arts industry artist with disabilities earn 41% less than their peers. 

Yet when I was working on my ndis plan I was asked what do I need to live a life that reflected my peers?  Equal pay would be a start.  The disability sector for all it recitic devaules the contribution of those living with disability.  I have worked in one organization where I was not paid because I had my dsp, my degree, my skills, knowledge and fifteen years on boards of disability support agency were worthless in terms of the Australia dollar.

The local council sees me as a leader in the arts and disability sector and yet the community skills struggles with what I have to offer simply because I think artists regardless of their disabilities should follow the same industry code of practice.  This is a struggle that those who work in the arts and disability sector have across Australian although I claim my job is tougher than other state representatives on the National Support Studio Network.

In terms of employment, wages and leadership I do not feel people living with disabilities have the same opportunities as those in other states.  It is one thing to set employment targets and representative numbers for those with disabilities it is another to attract suitable candidates to the positions. 

We struggle in the arts and disability sector because so few people with disabilities have received the skills training needed at national leadership level.  We both need the administrative experience and being practise artists to be qualify for our roles even in voluntary roles.  Don't get me wrong, this is not about my pay.  Pay me by putting the artwork of artists with disabilities on gallery walls.

If were fairdumk  disability lead leadership in this industry them we need to see the ndis assisting people to be trained.  My desire is to see a program to support artists with disability to work as professionals, trying to get funding from that is a pipe dream.  

I could take the easy road and run art 4 well being class; go study art threaphy or work for a disability support organizations, but none of these enable me to achieve my passion, my dream to see work by artists with a disability hanging in the national gallery.  I believe my first step is to get the ndia (outside of Ipswich) to recognized the production of artwork as employment.

Just wait until I get to the Arts and Disability Meeting Place in September so training for artists with disability can be put on the national agenda.

Yep! Still aiming for the stars!

Advocacy

What is advocacy and why is it needed?

With the introduction of the ndis there has been much discussion around advocacy. One of the central aims of the ndis is to give participants and their families choices.  Choices around the activities they take part in; the services they choose to access; those who they want to support them; when they would like to be supported. 

The ndis is design to assist participants and their families to live a life reflect by their peers. 

This includes holidays and travel.  To achieve this we as a community need to have a discussion around 'accessiblity issues' and how we can provide a more inclusive environment to live in.

Addressing false accessibility advertising and making business owners more accountable is only one of the issues to tackle as together we build a more inclusive environment. Depending on the type of disability that presents your individual challengers the issues around accessibility can look very different. 

For some people with disability a menu at a coffee shop can be a barrier. If you are visually impaired, have a learning disability or are simply unable to read. As there are many types of hidden disabilities so too are the many different barriers faced by people living with disabilities.  Working with business in the community to enable them to be more inclusive of participants in the ndis is another area the ndis is investing in our communities. 

This is a new role for advocates. There is a belief that once the ndis is roled out funding for participants to access an advocacy service will no longer be needed.  This is not true, to ensure people with disabilities can access the same choices as every other Australian we need to ensure they have a voice. 

Many people with disabilities feel unheard and this can occur on so many level.  Even myself, with the ability to articulate well have found times when I needed to use a disability advocacy service. Sometimes people are not open to trying new ways of doing things or don't have the time to listen to someone with complex communication needs.  This is where a disability advocate can enable people to have a voice.

Advocacy allows people to have a voice!

Advocacy is about speaking out when we don't agree with decisions made by others, or we feel our rights have been denied. In the past participants have not always had choices and when decisions were made without consulting them the have felt dis- empowered.  When we disagree with decisions we are no always right, but we should have the opportunity to challenge decisions made about our lives. Sometimes decisions are based on miscommunication and an independent person can help a dialogue to be reopened. 

There are three types of advocacy:

• Self-advocacy - speaking up for yourself
• Using an advocate - asking someone to speak on your behalf
• An advocate - who raises issues for discussion in the community.

Many participants and their families are not happy with some of the aspects of the ndis and their ndis plan. It's OK to express this. However its not OK to be abusive to you planner.  We all make mistakes and asking for a review may help as participants understand the decision better or mistakes may been found and can be corrected. 

Its OK to say your not happy!

If you don't express how you feel, nothing can be fixed and people will assume everything is the way we want.  However there is a right way and a wrong way to do this.  By keeping claim and letting the planner or the ndis know this you can open up a discussion.  If your still not happy you can as for a review, however you need to say why your asking for a review.

Remember its not about being right or wrong; it might be your planner misunderstood or made a mistake with out knowing.  Don't make the review or the reason your asking for a review personal. 

The introduction to the ndis is a great start, however interms of social inclusion we have a long way to go!  I believe advocates have a even greater role in this ndis enviroment.  People with disabilities may have funding for assistance to achieve their goals but the community is anything but ready to participaate along side people with disabilities.  Much needs to be done to educate business on the accessibility needs of disabilities.

It's time to find your voice!

ndis Directing My Future

My ndis journey has been very exciting this week, as I move closer towards self-directing my own supports.  The Ipswich Festival is also closing in on me and a number of competitions entries a due including work for Aspire Gallery.  Ooops forgot that one. 

My support workers have supported me to attend capacity building advisory meeting for ndis, purchase art supplies, photograph my artwork and living independently.

The ndis supports participants to reach for there dreams, through setting goals that are achievable. During my first plan my major goal was to extend my visual art practice. Having establish myself as a Ipswich based artist, I am now wanting to explore the Brisbane market and regional galleries as well.

In February I hosted my thrid solo art exhibition at the Drawing Point Gallery and have been regularly been taking part in group exhibition at Aspire Gallery in Paddington.  

After tiring to stick with traditional support providers for my individual support needs, I have decided its time for me to move forward and become more self-determining in the provision of my own support needs. Advertising for my own workers has meant I could target workers who have similar interests to me and/or skills that wills assist me to expand my art practise.  Such a photography. 

I often need to photograph my artwork to send to galleries and have an online portfolio. During the recruitment process I found a visual art student who had learn web design skills as part of her studies. This will make my gallery application so much more stream lined.

I completed interviewing all the applicants last week and over the weekend I decide who I wanted to invite to be on my first self-directed support team.  This week is all about reference checks and work agreements. There are many ways you are able to engage your own support team. 

• Through a agency such as high-up
• Through self-employed care or support workers (their ABN)
• Through an organization (Which I have elected to do)
• Through applying for your own Australian Business Number and directly employing your own team.

With self-direction comes additional responsibilities you can't just pay the girl over the road to clean you house.  Well . . . you can if she has her own ABN and insurances in the event she is injured while cleaning your house.  There a two types of services you can access under the ndis.

• One is to use an approved ndis providers. (Most business will have the ndis logo on if they are a provider.)
• Or an genetic provider like the girl over the road who has a cleaning business and her own ABN and business insurance. 

You can only use a genetic provider if you are self-managing your own funding.  I engage a home mainance team in this way. This has allowed me to redesign my garden to be more accessible. As a employer you have the same employer responsibilities as any other employer, you are answerable to the fair work commission and should be providing a safe working environment. This includes insurances to cover them is they are injured at work.

People ask while it took so long to employ my team.  I simply wanted to ensure I could offer a safe working environment for me an my team. I will be trusting this team of strangers to drive me round, help care for my artwork, take control during a seizure and organize medical assistance, thus they will need to be trusted with medical information.  These aren't people who were standing in a centre link cue. I wanted to be sure and that is my right.

I am now very excited to be looking at preparing to train my team and working with a very talented bunch of ladies whose skills I would never have access to previously to the ndis. Plan  A failed so lets hope Plan B works. 

It takes a village to raise a child.

Today as a nation we say, 'NO WAY TO BULLYING! Because this isn't a issue just for kids, parents, families, teachers, schools, facebook, social media or governments, it is an issue that we need to address together,  When I went to school bullies very visuable and wanted to be identified. The targerted anyone who was different inorder to big note themselves. As a kid with cp I was an easy target, but I left the bullies at the frontgate of the school. Some times school was a pretty terrible place to be!

However away from school there were no mobile phones, texting, msm, facebook on twitters.  Often people do not even know the faces of those who are bullying them. Bullying can occur anytime and any place: online, at school, at home, in the workplace or the gerenal public. I can be a one of event, or relentless 24/7. Bullying that occurs 24/7 can ware a person down, affect their self-esteem and confidence; and most worrying is the current trend of victims tacking their own life.

Bullies is what one thing, 'They want to feel better than those who they attack and they are attention seeks.'

The first clue a person maybe a bully is they're constantly in your face 24/7 and their not telling you things that make you feel grate. The will message you even when you a sleep and the want to dominate your thoughts!

Bullies are liers!

When I went to school bullies picked on anyone who was different; too tall, too short, disabled or simply wearing glasses.  Today for most bullies that is too obvious.  Today bullies want to isolate people to rob them of positive reinforcement.  Bullies always in the end make you feel bad. Your friends want you to be happy and build you up.  I don't hang round people who make me feel bad so if someone online upsets me I block them.

Never Engage With Bullies

Bullies thrive on attention if you fail to engage with them the loss interest. Remember you friends want you to feel happy if someone makes you feel horrible these are not true friends. 

Bullies don't always have faces.

If someone is not putting a smile on your face and saying different things to you, then the people you interact with everyday are the really worth talking too? If the answer is 'no' then you need to disengaged them.

Block The Bullies

If the person has nothing good to say, block their phone no; block them on social media, report them to others.

You could show a text to you parents, a teacher, colleague or friend and ask them if they is think what they is saying is true.  If they say 'no', then you should block them on your mobile, facebook, twitter or any other way they try to contact you.  You can report unwelcome behaviour on social media. If they start following you then that may be considered stalking and you should report them to the police. 

So if you think you're being bullied:

• Talk to someone you trust.
• Call kids helpline or lifeline.
• Do not engage with the person.
• Block them on the phone and social media.
• Report them if you need to.

We should all watch out for others who become withdrawn or seem to become down on themselves. The more people we have looking out for these signs in our kids and workmates the highly the likely hood we will be able to identify those at risk. 

Towards Self-Direction under the ndis

The key to your ndis pathway is choice. The role of the ndis is to empower people with disabilities and their families (participants) to be actively engaged in the planning of their own supports. This process begins with choosing your ndis goals and how your package will be administrated.

The administration of your funding has three main paths:-

1. the ndia
2. funds host provider
3. self-management

If you chose to have the ndia to manage your package on your behalf they will direct payment of invoices. You still will be setting your own ndis goals; be able to chose ndis support providers and supplies; and how you want to achieve your goals. However you won't be able to self-direct your supports or engage your own team of support workers. 

In most cases if you are under the adult guardian the ndia would prefer to managed your package. If you have a carer/guardian they can assist you to make choices around your goals and administration of your package.

1. Your guardian might self-manage and self-direct your package on your behalf.
2. Your guardian might engage a funds host provider on your behalf.

Choosing a funds host provider is the second way you package can be administrated. This will allow you to:

• nominate your ndis goals
• chose how to achieve those goals
• chose the steps in achieving your goals
• chose who will assist you to achieve your goals
• chose your providers and suppliers 
• self-direct your supports

Lastly you may choose to self-manage your package. This gives you all the choices around your goals and how you achieve them. As well as:-

• Chasing between a Plan Manager or Self Management
• Choosing to engage supports from ndis service providers and suppliers or genetic support provider like you local physiotherapist.
• Self-directing your own supports.
• Engaging your own support team.
• Establishing you self managed support network; paying invoices and reporting.

Developing your pathways can be difficult at times. As you move through the ndis maze you will find choices within choices. Some choices will lead to road blocks and others will lead to more choices.

Choosing to Self-direct

Set my ndis goals 

Plan Manager or Self-manage

Choose ndis or genetic providers and supplies

Employ you own support team

There are many ways you can choose to engage your support team some of them are:

1. Through a support provider
2. Through a staffing agency
3. Engaging a support worker through their ABN
4. Directly employing support staff through your ABN

With the last three choices you need to negotiate your service agreements an ensure who is responsible for insurances, work cover and payments of invoices and wages.  Who will organize supperannnuation of employees.  Lots to consider before putting an advisement of SEEK.

There are people who can assist you in your planning and coordination of your supports.  Your ndis planner is the first person who you will talk to about your goals, how you might achieve your goals and plan management. Other assistance can be found by:

• The ndis website
• Your current provider
• People who know you well. (This could be a current support worker.)
• Use an advocate you know 
• Carers' Queensland
• Other ndis participants
• Google
• ndis information sessions and workshops
• Queensland Disability Network
• Disabilities Services Expo
• Facebook discussion groups
• Per-support groups
• Reading articles, stories and blogs about ndis participants.

So I've rolled down the track a bit; made some mistakes; took some wrong u-turns; struggled with early pathways, struggled as we all are still learning how the ndis, made some changes in providers, asked lots of questions and I am thinking about my second ndis plan.

My ndis goals are about visual arts, inclusion and remaining independent. I am self-managing my package through engaging a Plan Manager. I started my journey through accessing one on one supports and threaphies through ndis service providers and engaging a home maintance team through their ABN.

Being an artist who does not keep 9 to 5 hours plan A has not worked for me. Like many participants in my area providers are still struggling to catch-up with demand and not been able to deliver on their promises.

Last week through the support of my Local Area Coordinator and Plan Manager I started interviewing potential members of my own support team.  To do this I am using a team I know well and trust. I also chatted to people in my network about the type of workers I was looking for.

Life as a artists is busy and there are always unplanned things to cope with, so I went to a recruitment agency. I ask them to advertise; short list candidates and arrange the interviews at times to suit me. 

Now I have almost finished interviewing I need to do reference checks and train my team.  My team will be employed by me through and agency.  This means my team will follow their policies and procressdures; be covered by the agency insurances and on their pay roll, their were a number of chioces I got to make along the way.  

I have been empowered through this process and enjoyed learning new skills, like working with a recuriting agency; interviewing and learning how to do reference checks. Now I need to look towards training my new team after Easter. 

This is my journey through the ndis maze, involving many u-turns. I hope it helps you in your own ndis maze.

Rolling on with the NDIS

Possible Entry for Brisbane Rotary Art Show

Recently the ndia conducted a review of the National Disability Scheme, feedback from participants, providers and other stakeholders show that the majority of these were struggling to navigate ndis pathways. The ndia admits their needs to be a change its pathways to enter the ndis for participates. In particular the planning process, the push for telephone planning system has left many confused and dissatisfied.

The speed of the roll out has also affected service delivery, provider readiness, staff shortages and over all dissatisfaction from participants.  The transition is not a few computer flicks to change from one system to the next, but requires a major change in the way people with disabilities and their families are assisted to participate in living their best life.

We all know the single biggest change is to provide participants and families greater choice in the services they choose to access to meet their individuals needs. 

'When you've never had choice, how do you make choices 

and how do you know what choices, opportunities and services 

there are available to choose from.' 

On the ndis website you will find a list of ndis providers to chose from. I am not sure what your experience has been in accessing this list, but I gave up with trying to fish out providers from an extensive list. So I was guided by what I knew and was guided by "Street Talk". 

For providers giving participants choice and control of supports was scary business, the current system provides care, risk management and protection for 'some of the most vulnerable people in our community'. Until now our experience of giving people with disabilities 'choices' was unknown and for many still is; our natural instinct to protect participants is strongly in grained.  

So it is naturally many feel they are swimming against the tide. However, `an end to a care system of disability' was what participants said the wanted the most, so providers and those who provide care need to adapt.  In preparation for the ndis providers needed to explore 'how they cared for clients vs how the empower clients', both models can allow 'the protection' we are accommodate with. 

The ndis does not throw out the disability standards, industrial awards nor workplace laws.  Common laws and those pertaining to 1992 Disability Act need to be upheld by services providers; supplies; support staff - whether engage through a provider or employed by a private individual.  People with disabilities are no sick nor are the an endangered  spices.

They are people like you! With their own dreams and aspirations, their own likes and dislikes, they live in the community, attend the schools your children attend; study; look for work; undertake training; need to learn life skills; work and own businesses. They have relationships; fall in and out of love; get married; buy houses or pay rent; have children; get divorce, lose love ones and die too,

Participants make these choices and mundane choices like when to get out of bed and what to wear and have for lunch.  The notion that people with disabilities can not make choices and self-direct their own lives is clearly unfounded.  Those who need guardians have them to guide them.  The ndis doesn't not abolish the law, but rather points to participants gaining these rights rights under the laws.  Until understand this we will all struggle with the ndis pathways.

The core key in enabling participants to make choices around service providers and equipment supplies and how their funding will be administrated, comes back to the ndis goals they nominate in their planning meeting.  From there a map or pathway to allow the participants to achieve their goals can be developed. For participants the two key questions are:

• What do you want to do?
• How do you want to do it?

Your ndis plan is not about what services, supplies or providers you will be accessing,  but you, your family and 'life choices' we all make. These are choices around accommodation; schooling, education and training; work life - employment or volunteering, sports, arts and recreation. 

I was reminded of the importance of ndis goals in the planning process this week. Reviews are conducted 3 months out from your 2nd year plan being signed off.  My Local Area Coordinator as me yesterday,  how my goals are sitting for 2018/2019, we know my goal of a new chair will be carried over, but what's happening with my art business.  For me this emphasises the role your goals play in determining what your plan looks like. 

The first question on the review is where are you at with your goals?    The focus on participants goals in their planning and evaluation process is unlike anything tried before. The ndis empowers participants to take the lead when determining their own supports and networks.

Yesterday, the Ipswich ndis Area Office turned 1! Congratulations to the team who have been empowering individuals and families to determine their own futures and live their best lives.   

Tomorrow I am interviewing potential support staff as I begin to self-direct my own team.  I am both excited and anxious about the road ahead, the knowledge that working with providers has not been successful for me, spurs me on to try self-direction  I will let you know how my team develops.