NDIS: OUR LIVES MATTER

I am a visual artists. In addition to this I would like to see my vision to establish a Ipswich Arts Community Network that foster's the development of Artists living with disability. 

I still find myself bemused at times over what others imagine my life to look like.  The physio asked my support worker today if I sign my own legal documents.  What doesn't she understand about me self-managing my own package?

 I am a small business owner so hopefully I can  manage a budget. I try to excuse people's ignorance, I accept she believe I can not self manage my funding.  But sign an agreement that I proven I can pay?

So today's been a bad day!  My coordinator forgot to extend my shift, my worker asked me to change my appointment, (that's OK its only the second time in less than a week. The taxi driver got lost so I was late anyway. 

To my workers surprise I need to wait unbelievably long times. I felt questioned, Did I accept that? Actually the service was reasonable..  I paid a worker 1 hr to wait for taxi's today, however I sensed she felt put out.  These are the things and the days that make me feel like I don't matter, I am expected to wait until the world has time to meet my needs. 

Everyday I deal with people who assume I have an intellectual disability and need to correct their misconceptions.  I organise my own life and I am self-carer why is that so unbelievable? I sit here wondering why I should put myself through this daily frustrations. Why do I even attempt to run a small business?

I am kidding myself that I will ever be accepted what I have proven I can do. The saddest part of this is the disability sector is the sector I can't convince. Most services want me to fit in with their agenda? Taxi's provide a second class service and I always made to feel my wheelchair is in the way. On days like today its hard to believe I the power to change the world.

I do not believe the ndis has failed. I believe we as a community failed to be prepare for people with disabilities to be empowered. Being empowered means we want the same quality of service as our family and neighbours. Remember underneath our skin we're all the same.       

On The Count Down

This week I being busy preparing for my solo exhibition opening 9th February. The National Disability Insurance Scheme or the ndis assists me to achieve my dreams and aspirations.  I best describe my lifestyle choices as creative. This includes anything from scrape booking, poetry writing, sewing, blogging and fine arts. I am actively involved in the Ipswich arts community and actively seeks to extend my art audiences.

Setting Goals

If you're yet to transition to the ndis you will want to give some thought to how to express your passions, activities and current life style as goals to your planner.  Think of goals as the things you want to do.  My goal for my first plan is to extend my visual art practice.  For the last 18 months I have being working towards my solo exhibition opening in 2 weeks time.

Deb Chilton presents ...

The Melting Pot

Drawing Point Gallery
(Arttime Supplies)
9th to 24th Feb 2018

My other two goals are around keep my independence and community living.  Your ndis plan will be developed to help you participate in the community. Your goals and how you participate in the community will determine what is in your plan. In pre-planning you don't need to consider your disability or service you want to access, you want to focus on what activities you want to take part in and how you will do this.

So in my planning meeting we discussed the activities I undertake to build my art practice, my networks in the art community, and my social circle. For example, I belong to a local church and I enjoy hanging out in coffee shops and meeting different people.  We did need to discus my disability (I have CP and mobilise using and electric wheelchair.) So one of my goals in this plan was to purchase a new chair better suited to my work environment. 

So let's talk art!  I am part of the supported studio network across Australia.  We are an information service to supported studios. A Supported Studio supports artists with disabilities to create, promote and sell their artwork. Like every other service provider across Australia we are struggling to remain relevant in the ndis environment.   As each artists is funded very differently under the ndis.

 One of the keys could be to express your goals and activities as clearly as you can. 

A professional artists create art to sell.  Remember you will be talking to a non-artists; or if your a sports person a non-sports person.  They with not understand the difference between an artists launching their career; an emerging artists or an established artists.  A visual artist is just as mysterious as a musician, actor or dancer. 'Yeah, but what's you're day job?' Let's face it the rest of the community see us as 'The Dreamers'.

If you are working at professional level you will be selling you art work or at least starting to enter competitions.  As a professional you or your representative need be able to communicate the day-to-day activities you engage in. This may include attending a day centre; belonging to a Supported Studio; working in a in-home studio or belonging to an open studio.  However making art is only on part of your job.  You need to help you planner understand the other activities involve in your job. 

Activities also include: How you want to achieve my goals.  If you goal is to sell you artwork you might be working towards exhibiting you artwork.  This is the main way artists sell their work. So this obviously involves working with galleries. filling in applications, research, framing or preparing work to sell, marking, media commitments, festivals and continuous education. If you're planner thinks you are just sitting in a day service making art to hopefully sell, then that is what you will be funded for.

So if your a horse trainer it might be helpful for your planner to know the type of horses you train or what's involved. Of course these will not be the only activities you engage in.  You will also have social activities, interests and hobbies. 

So you might be thinking, so where in my plan is money to get me out of bed; showered and dressed for work and out the front door on time, for school, work, training. a conference, your art group, respite centre or life skills course?  This type of support may be referred to as reasonable and necessary supports.  It is reasonable you will want a shower after tennis training or working 4 hours in the art studio. 

These supports fall into 'core support' the practical assistance you need every day to get from A to B or even for someone to feed you or your child. If you already receive support you will have a based line of your reasonable and necessary supports, you planner will ask if the is enough. If you have not had support before you my need to have an OT assessment. 

Other supports you might need are assisted technology, mobility equipment, skills training, things to improve your or your child's independence.  The other area of discussion you will be with your planner is the administration of your package. This has chewed up a lot of my time and supports this week. 

I am self managing my funding through a plan manager.  Which until now as meant, I worked with a provider of my choice to establish an agreement. The agreement will spell out what that will mean for my day to day activities. The type of support I access is direct-one-on-one support in-home and in the community. 

In Queensland this means you can now choose the provider(s) you want to provide your supports and how you who like those supports delivered. Even though you now have a choice of providers you may option to stay with current providers and sign an agreement no to different to what it did in the past.

Except your service agreements now a quote needed to be attached. So you or the person managing your funding, sets the amount aside. This is like your weekly household budget on a yearly scale.  A budget ensures you have the money to pay your bills. In this case your supports.

;

Your three basic plan management option are:-

• The ndis handles this on your behalf. (note if you are under the public trust this option is encourage strongly). However you can still chose the activities you undertake. preferred providers and how you access their services. 
• Have someone (host fund-provider) to manage your funds for you.
• Self-direct and/or self-manage. This week in the processing the restructuring of my supports, I realised just how many different ways to achieve this. From self-directing your supports through a provider; self-managing your funding and service agreements; or establishing your own support team and effectively establishing you own support provider service.

Until now I have been self-managing through a service provider and now I will be choosing my support team on behalf of my provider.  Officially my team will be employed by my Plan Management provider, however I will be doing the recruiting, hiring and training of my own team. If you chose to completely self-manager your funding and hire your own staff you will b responsible for all industry and workplace requirements.

As such these are the skills I have been brushing up on this week. Much of my knowledge was developed during my time of the CATS Board. Skills such as: employer requirements; risk assessments; writing agreements for employees, reports for the insurance companies, setting up my home as a place of employment.  My trainer said 'I nailed it.'

I was just glad to be going into a long weekend, between management training and working on my exhibition I was exhausted. There were a few competitions and gallery submissions I hoped to submit, but in thee end I decided may be next year. .  

Next year my support team will be in place and I will be paying a key worker to do some of the administration around engaging a support team. Presently, I am feeling very blessed to have a strong network of people to assist with the switch to self- directing and self[-management; and my art group to assist with the particular tasks involved in filling a gallery of my work alone! 

I hope to post next week, but if I don't, I am still doing that last minute stuff that I am sure I not even thought of yet. If you are thinking of self managing or self-directing, time management skills are a must, Especially when you're self-employed and if you get sick you still need to work.  "As they say the show must go on! 

The Melting Pot!

Straya Day 18!

I've told you once,
I've told you twice
Australia's life in the Melting Pot!

The sun's ablazing
The temp is rising
Emotions are getting hot.

Some for tennis and cricket too
Others head to Australia zoo!
Aussie! Aussie! Aussie.

Along our shores they with line,
We arrived here over time,
Our indigenous mark our crimes.

We are now one
Under the blazing sun,
Underneath tensions rise.

We gather for the North and Souths,
To make our homes and build our house.
What a shame we built fences to.

English, French and German too,
The Greeks, Italians and Asian woo who
We ignore those who live here!

On our boats we travelled far,
The Vietnamese  formed who we are,
Now it seems we're over crowded.

Time has lapse we grown tall,
Tall poppy syndrome affects us all,
Look at me! Look at me! Look at me!

Talk about the winging proms
We've perfected the sorrow song.
You're wrong. You're wrong. You're wrong,

Land rights, LGHTI rights, women too,
People with disabilities included too.
We all want in on the best there is.

It saddens me we've gone astray,
We're lost the meaning of today.
Boiled over in our pot.

We demand to rule the roost.
Pointing fingers we start to boast.
Now divided in this land. 

I've told you once,
I've told you twice
On Australia Day expect a fight,

Debbie Chilton Copyrights 2018

Rolling on with my ndis gaols

Planing for your future under the ndis involves setting your goals. Transitioning to the ndis should create choices and new opportunities for your family. However any change brings stress and uncertainty, even one of the most exciting days of our life for example a wedding day or birth of a child comes with mixed emotions.

The best way to view the ndis is an opportunity to explore and make changes, if that is what you want. If that is not what you want expressing your goals to your planner will ensure current supports remain in plan.  Just be mindful that under the ndis 'supports' are boarder and includes such things as home modifications. equipment and therapies. Your ndis planner/Local Area Coordinator will advise you where these fit in your plan.

What are goals?

• Things you want to do.
• Things you want to achieve
• That reflect your daily activities.

General the ndis is looking for 3 goals. Two goals you will undertake in the first year and a longer term goal.  Your goals or the activities you undertake will change overtime. For example when your child finishes school or you move out of home. Under the ndis your supports are determine by 'the things you want to do' and how and who with you want to do those things.

For example you might want to learn to dance. Ways you could achieve your goals are:-

• Individual coaching/support
• As part of a class supported by a support worker
• Through a group organised by a disability support provider
• As part of your providers activities or social groups.

So not only is your plan about you and the life you want to live, but how you chose to do those activities.  The ndis also allows you to chose your support provider, types of support services (i.e. individual or group setting) and the times you do activities. Foe some people this many not impact their daily lives.

Your goals can be around any aspect of your life:

• Independence
• Life skills
• Education/training
• Where you live
• Lifestyle choices
• Work
• Sport
• Hobbies and Interests

You can now chose how you want your funding to be administrated or managed. There 3 main options are:

• Ask the ndis to do this for you
• Ask someone else to do it for you
• Do it yourself.

If you chose to do it yourself like me, the ndis will make money available for someone to support you to do this well. Or it might be you parents who are doing this on your behalf.  I self-manage through a Plan Manager, my Plan Manager allows me to elect what I will do and the things I ask them to do.  I ask my manager to pay  my invoices and do my reporting.

Until now I have engaged supports from Disability Support Providers, in the same way I did prior to then ndis.  As my supports are individual supports I am now choosing to engage my own support staff with the assistance of my planer and a recruitment organisation.

Today I looked at what my responsibilities are as a representative of the provider I have chosen.  I have elected to recruit and employ my workers on behalf of my Plan Manager, this means my staff will follow the polices and procedures of the organisations, and I have delegated authority to ensure all obligations of an employer are meet.  My Plan Manager will pay my staff as directed by me and I will signed their time sheets. 

I have set pay rates under the award and determine the number of workers I need to recruit. For now I will engage my current support provider to provide my in-home support. Providing me will security and back-up of my workers are ill. Now its on to recruitment.

So what are my ndis goals?

Long term I want to become a ndis provider of support to artists with disabilities through Ignite Artists.

Short term I want to purchase mobility aids to support me to work independently in my community as a visual artists.

My second goal is to establish me art practise in Ipswich, through developing my skills and networks.

My goals do not state how I will be supported or indicate any providers I might engaged.  These were determine after my plan was approve and a changing as I become more empowered to self-direct my supports.  This will not be the case for everybody. 

If you are planning no changes to your supports you will still need to establish new agreements with your current providers, but you can delegate someone to assist you with this task.

Transferring to the ndis should empower you:-

1. Make your own choices
2. Chose how you funding is managed.
3. Chose how you want to be supported
4. Chose your support provider(s) and/or support workers
5. Chose the service or product the service provider will be providing.
6. Determine the length of the agreement. (It doesn't need to be 12 months.)
7. Some providers will enable you to chose you support workers and times, but you need to check this before signing the agreement and all agreements must be accompanied by a quote and providers have the right to know you have the ability to pay.   

If you find this is not your experience or you have concerns about your ndis plan then the first step is to discuss this with your local area coordinator or your representative. You have the right to request a review, 

Where you feel a provider is not giving you choice or empowering you to make choices you can:-

• Make a complaint. 
• Ask your local area coordinator for advice.
• Ask a representative to support you to talk to the provider.
• Chose an advocacy service to advocate on your behalf. 

Early findings show those who have thought through the goals and activities they want to under take find the transition easier.  Things to prepare are:-

1. List of current activities and supports (not providers or workers)
2. New activities you would like to include and the type of supports you will need.
3. List of all current supports, aids, technologies, therapies
4. List of informal supports provided by family and friends
5. A support person who understands the ndis objectives. 

With less than a month to go until the opening of my next solo art exhibition is less than a month away you can imagine I been busy working on this.  In terms of my ndis goals, this falls under my growing my art practise. 

Those who know me know I have two passions, one is art and the other is advocating for people with disabilities.  My upcoming exhibition - The Melting Pot combines my to passions.  I hope the exhibition begins a discussion on how to build an inclusive community.

This week I have used my support to photograph my artwork, deliver my artwork to the framer; develop doll stands for display and finishing touches. My invitations are now printed so pm me for a copy or Visit my Facebook Event Page.

Celebrating our Heritage (Australia day or not?)

With Australia Day next week I thought I share some of my own thoughts regarding a day that is dividing our nation.

I have a deep adoration to Indigenous Australians and the richness their cultural brings to our Modern Society.  I also acknowledge the past and the way colonist treated the traditional owners of the land.  It saddens me that our true history is only just emerging due to the strength and courage of Elders past & present.

As an Australian of European I think it good to recognised our failings and the Indigenous spiritual connection to the land is very different to our own.  The culture spans thousands of years and tribal ownership over land still exists. Land we claimed, bought and now owner with out the consent of the original owners.  I as an European descendant will never truly understand this deeply spiritual connection and nor do I wish to simply dismiss it.  

In 2018 what I would like to see is a celebration of nation. A nation which gathers those from across the globe to unite with our Indigenous ancestress. I not sure marking Invasion Day would profit anyone. Rather it severs as a reminder of what divides us not unites us. I do not think we need to mark the 'sins of our forefathers. As a mark of respect we could move Australia and perhaps rename it. Whatever  this day is named  it needs to be a day of celebration.

What Indigenous need is to celebrate their culture and the fullness it brings to our nation, rather than making it about the past.  I think we need to champion the survival of Indigenous heritage and culture as we move forward from this current debate. To take the opportunity to do something we have never done before, celebrate indigenous culture and applaud its survival.

We have both acknowledge and apologised for the past, to continue to protest for what can not be changed. brings division, continues to divide.  We can and should celebrate the heritage of all Australian and maybe the day we agree to do so could become our national day.  Changing the reason for celebrating not the essence of the celebrations themselves.

Yep lets scrap Australia Day and find a date to celebrate our combined heritage, looking to a bright future not our dark past. 

         

Bullies are attentions seekers

"Bullies are attention seekers." I wish I knew that when I was growing-up. But back then the bullies I encounter were pretty harmless.  Just class mates looking for short term attention for some quick laughs at your expense. School bullies are looking for one thing - a reaction!

At worst the bullying I experienced was name calling or incorrect labelling. I realise now I was mostly likely a misfit because I appeared like an air head, the reality was I continually created stories in my head.  This made be a perfect target for bullies who plotted my demise behind my back. 

The worst experience was due to my desire to fit in. While classmate were swamping Easter eggs, I felt more isolated and lone.  Due to my cp I could never keep up with the physical activities.   I wish I knew what I knew now.  Not everything was about my disability.  Anyways this boy I kinda digged handed me a white lolly packed. I wanted an Eater egg so bad that I practically jumped for joy.

When I opened a packet my reward was a rock covered in dirt and crawling  with ants on that day I saw on their faces the joy their low life act gave them.  I still continued to fall into their traps and feel sorry for myself.  Little did I realised the non acceptance of myself was the key.  Accepting I was different and not caring what the thought stole their thunder.

However I know deep down there is still a little child wanting to belong.  I know this because a few months ago I was targeted online. I work hard to help build a community spirit in Ipswich. I shared numerous times about my love of hiding decorating rocks and how it has brought new community connections into my life. 

I belong to two online communities Ipswich Rocks & QLD Rocks. When we share hiding spots and our finds. These communities exist all over Australia, try goolge for a group near you.  However I was into rock painting about 10 months prior to the birth of the Ipswich group and using the activity in kids workshops. 

A new member come into the group seeking attention and a  bit of control.  He would post, could person who found my rocks please post a picture.  I have hidden hundreds of rocks because I love hiding them and I know others enjoy finding them.  Without hiders the can't be finders.  "I'm a hider"  about 10 photos of my rocks have found our facebook page. 

Anyway this member decided he didn't like some of the group 'rules' and thought we 'owner' the concept so when he found people selling 'our rocks' he was not impressed.  A few of us began to engage with him to bring correction.  Go on pinterest and see painted rocks are an art form in itself.(rock painting) This chap argued you couldn't own and sell rocks. 

Individuals were then targeted through messager. I was a goodies two shoes for working with disable people. Are the thought that lowly of. No one in the group at that time knew I had a disability and I wasn't going to supply that or any other information.  I reported him to the group administration and stopped posting. Bullies want you to engage. 

I have no idea who this fella is, but I feel sorry he feels the need to seek out this type of attention. By not publicly posting his thoughts it was my word against his. 'Tell some one.' - A screen shot shows word for word what's being said.  Block them - Once the story emerged and I was not the sole target, he was band from group. 

These are not people you can debate with. For one reason or another the are angry with the world. Do not believe their lies. I work with other people with disabilities because I believe in inclusion.  We need to meet the community halfway. People with disabilities need empower themselves to activity engaged in the community. 

1. Stop engaging with the person.
2. Don't ague or debate them.
3. Don't retaliate. 
4. Save the evidence.
5. Tell someone.
6.  Block the person
7. Report the person.
8. Remember this all about the bully, not the lies the bullies want you to believe about yourself. 

Help is available

Lifeline Helpline Counselling

13 11 14

Beyond Blue

1300 22 4636

Kids Helpling

1800 55 1800

DO NOT GIVE BULLIES THE ATTENTION THE CRAVE.

The Melting Pot

The Melting Pot

Opens February 9 2018

Drawing Point Gallery

Arttime Supplies

203 Brisbane St Ipswich.

A Celebration of Diversity

Disability Advocate, Artists and Poet

Invites you to Celebrate Diversity

At the opening of her exhibition

Friday 9 th February 2018

From 6 pm

Artist's Bio

Deb Chilton is a local Ipswich Artist born with CP and is a disability advocate.  In 2012 Deb was invited to be part of the Leaders for Tomorrow Program, during this program Deb elected to become a disability advocate and connect in the community through art.

As part of this program Deb commenced formal visual arts studies at Brisbane Institute of Art.  Thus combining Deb’s two passions; love for creativity and being a voice for others with disability. 

Artist's Statement

In 2013 whilst involved in the Leaders for Tomorrow Program Deb commenced studying at the Brisbane Institution of Art. In 2014 she created her first doll ‘Gabby’. Deb’s then mentor thought Gabby was more craft then art.  She still struggles with the understanding of “what is art?” and “what is craft?” and admits this current exhibition blurs the lines.

What is more important in this exhibition is to create a platform for debate on diversity and social inclusion.  For Deb good art, creates discussion and forces us to ask questions.  Art is not to answer these questions but to promote debate.

Through the journey of ‘the melting pot’ doll by doll, Deb demands a voice and a value to her work.  For each individual regardless of colour, creed, gender, beliefs or abilities add to the fabric which is woven into community.

In the mist of diversity we need to value each other.  In the exhibition Deb has chosen not to give some dolls faces.  These dolls represent the voiceless, those with disabilities is the streets of Calcutta, disregarded by society.

it was Deb’s intention to produce an exhibition to produce discussion on diversity and inclusion. Deb’s other passion is advocating for people living with disability and giving voice to the voiceless. Her dream to see a community that embraces difference and celebrates the riches, of our backgrounds can bring to the fabric of life. 

It is impossible to give a comprehensive explanation of disability and the best way to learn and dispel the many common myth is to broaden your experience. Experiencing my work, begins to breakdown some of the general myth conceptions.

I hoped this exhibition lowers your own barriers and fears relating to disability. So you can discover for yourself that disability is not less but another layer to the diversity in modern Australian society.

Many thanks to Mieke Den Otter

For documenting journey

through her camera lense. 

NDIS Time to Speak Up

The National Disability Insurance Scheme or the ndis is more than just providing support and assistance for people with disabilities. It is one step in ensuring the Human Rights of a minority group who until now have had 'no voice', On the road to what has become known as the ndis, the battle ground was formed by a grassroots campaign known as Everybody Counts.

A movement lead by people with disabilities, their families and the people who support them.  The focus of this movement that we all count and people with disabilities wanted to be countered in the lives of their community!

When we're asking to be counted in we are asking to be treated on an equal footing as everybody else. While we are appreciative of compassion, we no longer want to be viewed as unfortunate or charity recipients. 

Being on equal footing means doing the same things as everybody else: Like schooling, sports; education; training; employment, recreation and participants in the governing of Australia. For two long people with a disability have not had a voice, either too

• Communication difficulties
• Or perceived ability to understand

Intellectual ability does not determine a person's ability to think and reason. A individual's comprehension is determine by a much wider spectrum than an IQ level.  Finding our voice is about the ability to make statements the hold meaning and value.  It about having our words herd, understood and validated.  Our statement should hold equal wait to other community member regardless of the presence of disability.  

Finding Our Voice

Some people believe the successful introduction of the ndis ensures the protection of human rights for people with disabilities  It does not. Those who have enter to scheme know that out ability to access certain aspects of the ndis needs to be improven. Those who fall under the adult guardian for example, are urged to have the ndia administer their package. I am not going to argue this in not necessary, for some financial management is beyond their ability in the skill area.

That's the whole point that the ndis looks at each individual and the abilities they have.  Where those abilities are deficient determine an area where assistance is needed. As a whole the ndis empowers individuals to make choices.  However it is still a system reliant on humans to determine what assistance needs to be provided. Mistakes are made and when this occurs people with disabilities have both a right and a responsibility to bring this to the attend of others, to achieve this we need to find our individual and collective voice. 

People with significant communication issues will always need the assistance of an advocate to ensure the are correctly herd. Advocacy occurs on many levels, however it begins at the individual level where a person or family said this is what I want. 

To advocate or to have access to an advocate is a basic human right and attempt to remove access to an advocate due to the perception a person can now do it themselves is a breach of the International Human Rights Charter.  We all need to engage advocates at different times in our lives.  Advocacy usually relates to the law or legal matter, their are times when we all need to seek a professional to advocate on our behalf. In most cases this involves a lawyer. 

Many people with disabilities are denied access to the law on the base of disability or mental illness, regardless of which side of the law they find themselves.  A statement or testimony can be ruled invalid on the grounds of disability.  The legal profession doesn't need to prove the disability impairs the persons judgement. While people with disabilities remain less equal under out legal system they will always need to engage an advocate.

Where a person feels 'wronged' by a decision made by the National Disability Insurance Agency they have a right to either make a formal complaint or ask for an independent review. This is simply acknowledging  we are all human and we all make mistakes. Of course that a mistake has occurred still needs to be proven. 

Under previous 'disability care models' organisations have viewed people with disabilities as patients. The majority of people with disabilities are not sick and do not need medical care. They may just need assistance to take their medications. Historical we have taken a position that disability means less able where in fact disability occurs as a result of an impairment. Impairment refers to 'normal' function range. Under this definition short sighted people have a disability, a disability correct by glasses or contact lenses.

In some cases disability can be overcome through medical aids and physical modification of buildings and cars. Meaning the person can function like any other person in the community. Clearly in these cases the individual doesn't need care.  The historical approach to disability as left people feeling dis-empowered. 

If you feeling nothing has changed under the ndis then now is the time you need to find your voice.

Time To Speak Up

1. Be prepared: Know your goals and the activities you want to engage in; know what supports you receive; know your needs; know how you want to be supported; understand the ndis language.
2. Everybody has a right to a support person. You should not attend a planning meeting on your own.  There's too much to remember.
3. What you don't understand you need to ask for clarification. The only dumb question is the one you don't ask. 
4. Keep a record - write notes to jug your memory and ask your support person 'what they think about things'?
5. If you are still uncertain you can seek and independent advocate and their are organisations out there to assist you to navigate the ndis. 
6. Use google: Where your questions are not answered try google.      
7. Engage an independent advocate to discuss your concerns with the ndis.
8. Use your Local Area Coordinator to help you access information.
9. Find allies: These are people who can support you to activated your ndis plan. These people may include family, friends service provider coordination, a supports coordination, GP or a peer group of participants. The Queensland Disability Network has peer support groups in many areas where you can share you experience. 
10. Know your rights. You have the right to ask for support; you have the right to ask for a review and you have the right to make a complaint.

If you feel like nothing has changed under the ndis it might be time to speak up!

      

NDIS: Choices and Changes

NDIS Choices  

The 1st of January marked the first year of the ndis roll-out. The  National Disability Insurance Scheme known as the ndis is the new way people with disabilities and their families are assisted to live in the community. The roll out began on the 1 st January 2017 and by the end of 2019 an estimated  400 000 people  will be support by the ndis across Australia. NDIS will assist people with permeate disabilities who are Australia citizens or residents, aged between 0 and 65 years old. You can check your eligibility and roll out dates in your area on ndis website.  

I became an ndis participant in June 2017 and like others I have been documenting my journey on my blog to share with others so they can learn from my experience.  For information on the ndis your first port on call is the ndis website. Reading the stories and experience of others can also assist in you ndis pre-planing.

One of the aims of the ndis is to promote individual choice. Previously people with disabilities have been limited in the choices they could make in terms of their care and supports. Others determined their needs and the types of supports individuals could access. Supports: What type; who provides it; when you access support and how often can now be determined by participants and their families by nominating their own goals. 

This doesn't mean you need to change your lifestyle, activities or providers, it simply means you can, if you choose. Although it is important know the language around disability support has changed.  People and families are now referred to as participants, this is because the key agenda of the ndis is to enable individuals to be more activity in their communities.

   
Supports now include a much wider range of items: some of these are: early intervention programs; behaviour supports, equipment, modifications and technologies; improving independence and lifestyle; physio, speech therapy, counselling and more. You may find it helpful to visit the ndis website for more ideas.

Setting your goals.

The simplest way to understand the ndis concept of goals is the things or activities you want to be involve in or the things you or your child wants to achieve. 

Climbing Mt Evenest may not be an ndis goal even if it is one of your personal goals.

Let me share some of my personal and ndis goals, that may give you some more understanding. 

My personal and professional goals:

• To grow my visual art practice = creating artwork and exhibiting my art to sell;  In 2018 I want to develop and advertise my Esty online shop.
• To grow my Ignite Artists Business = mentoring other artists.
• Maintain my independence and wellbeing  = healthy lifestyle choices and mobility.  

In 2017 one of the ways I used my individual support was to engage a support person with landscape skills to assist me to build an accessible garden where I am growing my own vegetables.

So to map this out more for you:

1. Personal goal: Maintain independence
2. Activity: Healthy lifestyle = Build garden 
3. NDIS goal: independence in the community = purchase a new power chair to get me into tight spaces like my new garden.

Well I think the ndis plan said the wheelchair needed to be designed for doing art in the community and it will do that too. My hope is to demonstrate how to go from your lifestyles goals to arrive at your ndis goals and then chose your supports. 

Making Changes Through ndis

The ndis can provide you with greater flexibility in the coordinator of your supports. Participants can now chose who manages and how the manage their supports. Many will chose to have the ndis mange their funding for them, whiles others after years of have no say ant a little my control.  Regardless of how you choose to have your funding manage you now have a say in who provides your services and supports.

  

I am self-managing through a plan manager in 2018 I am choosing to engage my own support team in the hope of gaining greater flexibility. My plan manager is also a support provider and a emergency/temp provider of support workers. This should provide me the best access to all my support needs. 

In addition self-managing provides me with greater choice of who I chose to provide my supports. I am no long tied to disability support providers to meed my support needs. This has allowed me to pay for specialist support skills like home maintenance. You can find out more about ways to manage your own funding on the ndis website. 

We are discovering those who prepare for being supported under the ndis are handling the change better than those who have no idea of what they want. Pre-planning can involve a few things:-

• Gaining an understanding of the principles that underpin the ndis. (e.g. greater access to the community and enhancing your lifestyle).
• Understanding the change in terminology. Learning to talk the talk. You will find these terms used on the ndis website.
• Knowing what supports you access now and whether they are enough or not enough. The ndis will also ask about your natural(friends and family) support systems.
• Knowing what type of activities you would like to do. (These will form your ndis goals).
• A basic knowledge of disability support providers in your area on the website.
• Knowing how you would like to be supported.

Your Plan

The ndis participant plan is the plan you will work from to chose your supports. Your ndis plan is about you and your family.

Your plan will have:-

• Your ndis goals for the next 12 months.
• How you funds will be managed.
• You transport allowance and who it is paid to.
• The supports you can purchase and a budget.

Purchasing Your NDIS Supports

This is the most significant change for participants. Participants can now chose the disability provider(s) they wish to access. Many participants including myself are still getting their heads around the changes and expansion of supports the can now access. So they have choose to remain with their existing providers.

Previously I has direct support services (core supports) from 4 different services and I had to use the type of supports decided by someone else. In-home support and community access hours were not inter-changeable. In a fortnight I would have 16 different support workers, to support me for different activities. This was one of the things I was keen to change under the ndis.

Each support service provider will do things slightly different. The policies and procedures of a provider should determine their service delivery. For example workers drive their own car or the have a company car. This is one of the things I found difficult in having four providers. I this was more complex as they we all providing similar supports. 

So in 2017 I chose to have all my supports deliver by the one support service.  I made my choice based on the type of support workers I wanted to support me. This is something I will carry forward in to 2018.  I feel the way people with disabilities and their families are cared for and supported has changed significantly in the last 30 years and the ndis provides the next chapter. I want to engage support workers who are ready for the next chapter.

We are now moving away from those traditional models of care (except we're individuals have complex high care needs) to a model where participants and family members are more active in choosing their own supports and how they want them to be providers.

Participants and families need to have a greater understand of the activities they wish to engage in and the way they want to be supported to do those activities for me that is individual support as I have a wide professional and community base networks. Other participants may choose group base activities to grow their friendship base.

Whether the activities you choose to engage in have change or not, be aware under the ndis you can change your service provider.  So before you sign your next service agreement check what services your current provider offers if you are looking for something different your provider may now be able to accommodate you or you may choose to explore other providers or community groups.

I belong to a number of community groups including local poets; Ipswich Arts Connect; my local church and Ipswich rocks. Now is the perfect time to explore new things. 

Under the ndis people with disabilities and their families should feel more empowered to ask for what they need and want. If that's not how you feel you might need to find yourself an advocate.  An advocate is a group or person who help you find your own voice without fear of repercussions. Everyone has the same right to voice the opinions and provided you request are reasonable most people will at least listen.  

There are a number of groups in the community who provide advocacy and support to enable you to have your needs meet. Such as Disability Community Awareness, Queensland Disability Network, Advocacy Queensland, and Regional Advocacy Ipswich Services.  Many state and Federal MP's are also able to put you in touch with people who can support you to have your say.

So the most important thing to do as you start 2018, is to take the next step or roll in your ndis journey.  It also may be the hardest, so don't be afraid to ask for help.