Blair Disability Links 2016

Supported by Shayne Neunnam MP

Great to catch up with my colleagues at Blair Disability Links yesterday.  The launch of the 2016 Disability and Seniors Links booklets brings a list of service providers together for those needing support in the Blair Electorate. These should a real asset for those planning to live their best lives under the National Disability Scheme in Blair.  I more than happy to come have a chat with you about where art fits in with your NDIS goals.

Personally I like to thank Shayne for his acknowledgement in parliament of the work I do in Ipswich and highlighting the access issues artists with disability encounter in their daily lives. Today being International Day for People with Disabilities, we don't want to focus on our inabilities but continue to work together to build an inclusive community for us all to work, live and play.

I am committee to continuing to highlight the access issues for all people with disabilities to ensure into the future we are fully participating in the lives of our community. You can support my work through purchasing our Artisability Christmas cards here or email us your order.

All Cards are $2 this year

and designed by our talented artists.

View Shayne Neumann's Disability Links Video to see how your money is being used to enable our artists to access the community.

Accessing the Arts Community

Artists with disability have the skills, talent and ambition to compete in the arts industry both here and overseas, but few of us meet this reality.  Why?

All of us knows the long unpaid work hours it takes to get our work from the studio to the gallery wall or floor, in the hope to achieve sales. Yes, there are days . . . . many days we think arrh too hard. Add to this a layer of communication disorder or needing to depend on an advocate to negotiate with a gallery.  Then you needed to nargivate a team of supports and bring them onto the same page.  Your advocate and legal guardian, chances these two people know little about art and even less about working with galleries.

These are the artists I seek to work with . . . But that's not where the access issues begin.  #1 access issue is to have these artists valued as artists and their contribution to the arts community recognised by others.  This begins with pricing work right?  Very wrong. . . This begins with convincing people that artist with disabilities can produce artwork worthy of hanging in public galleries.

. . . Convincing parents, guardians and advocates that these artists should be training at a professional level.  The means the artists I work with are selling or intending to sell their artwork.  Art for well being and warm fussy is great and truly worthwhile. However that is not what I am on about.  Nor do I want to be a tool or participate in tokenism.  I do not like selling other people's art at less than the cost it cost me to hang on a gallery wall.  As if their time and my time is of no value.  This being the case the buyer might as well create the work themselves.

Personally, my support workers are not happy with my own prices. However, I am the one smiling . . . as many of my works do sell.  People usually can recognise my work.  I value my work, my time and my skills and this is what every artists needs to accomplish in order to be working as a professional artists.  How do you ensure this happens when you can speak?

To add insult many of the artists I attempt to work with have to justify the investment in the training, even when its their own money, because they have a guardian.

The # 2 issue is not cost of workshops and classes it is the cost of transport to attend workshop, which is often more than the cost of attending a class. A cry when a parents admits defeat.  Its not work the costs.  No wonder why their self esteem is low. Their begging for the right to go across town in a cab or a few $100 to travel to Toowoomba buy cab. 

Opportunities for the artists I work with will always be limited by the access costs.

# 3 issues is physical access . . . arriving at a building with no wheelchair access, poor lighting and noise.

These are the issues we can easily address with funding. Once we convince people the costs are justify.  The world shouldn't be like this.

You can assist me in addressing access issues for these artist by purchasing you Christmas cards through Artisability.  All cards cost $2 and were designed by those involve in out programs.

can be purchased online

Deb's Roamings

December 3rd is International Day of People with Disabilities

On this day we celebrate the achievements of people with disabilities and there reliance to overcome the obstacles face due to disability. It also provides an opportunity to create discussion in the community around what disability is and how it impacts the lives.  Living with disability does not make us completely incapable and there is still much work to be done in terms of dispelling common myths.

As the National Disability Insurance Scheme is currently being rolled out across Australia the key agenda is to increased participation rates of those living with disabilities, to ensure they have the same opportunities as their able body peers.  Supporting individuals with disabilities gives family members opportunities to participate more fully in life.  These are basic human rights.

So its time to talk about what I can do not my disabilities.  Guess what?

I can do art . . .

And this is the theme of an art exhibition I am participating in to celebrate International Day for people with disabilities. "I can dance and sing in the rain if that's what I chose to do!

This exhibition opens on Monday 28th at 4pm and is hosted by Ipswich Inspirations Gallery in Ipswich City Square.  Gallery is opened Wed to Saturday.

So if I can do art some can many other people living with disability in the Ipswich Region. In 2017 I am hoping to build a socially inclusive network of artists in the region.  If you want to know more I will be at Blair Disability Links on Friday 2nd December between 10 am and 2 pm at Brassell Shopping Center and would love to chat to you about how you can be involved.

I will also be joining in the celebrations hosted by Ipswich City Council on the 4 December 8:30 to 12 pm @ Redbank Plaza Chimera. where the ArtISability team will be assisting people with disabilities to participate in art activities.

As well as celebrating ID4PWD's I am participating in Artistian Markets and two group exhibitions.  You can purchase may artwork at:-

1.  Gifted - Drawing Point Gallery 203 Brisbane Street Ipswich. Opening Night 2nd December @ 6 pm and runs through to Christmas.
2. On the same night I am at Catalysis Twilight Markets 4 pm to 9 pm. Catalysis Church Brassell.
3. Off the wall exhibition - By members of Arts Connect opening night December 9 th @ 6pm.

So I hope I can connect with you sometime over that period.

You can also purchase my work online through my Etsy Store.

Trick or treat . . Choose life

Many Australians view Halloween as an American Custom, involving dressing in costumes to go trick or treating. In fact it is not a American tradition at all. Halloween is a pagan Celtic harvest festival. Halloween as we know it is said to be a 'Christian version' of the festival.  However there is nothing Christian about celebrating the day of the dead.

As a Christian, I see nothing compatible with anything that celebrates death. I believe while death may destroy a body, life of a soul is eternal. With two options, eternal life with the 'light of the world', Jesus Christ or eternal darkness. The separation of the soul and the body, that which we term death, closes the door on an opportunity for a soul to repent.  Those who die without Christ are condemned to eternal darkness away from 'Christ who is the light of the world'. Certainly that is nothing to celebrate.

Halloween is celebrated on the eve of All saints Day, by the Roman Catholic Church.  All Souls Day or All Hallo is celebrated by the Church.  On all souls day they pray from the dead to be reunited with Christ. Something that death itself  prevents and on All saints day the pray for the dead of the faith. Here we see the 'Christiansted version' of Halloween still focus on death. There is nothing to celebrate when it comes to losing a soul to eternity.

Death in totally incompatible with life. As a Christian I am predominated with life, praying for the living and spreading the message of Jesus Christ which is life giving.

Jesus himself said let the dead buried their own dead. Luke 9:60.  There is no foundation of a genuine believer to be celebrating a feast of the dead.  If you are using this occasion to share the gospel do not say your celebrating the Day of the Dead  use it as an opportunity to shine Christ love.  Be honest with those who walk a crocked line. Ask them to celebrate life by asking Jesus Christ into their lives. This would be real cause for celebration.

At the curificition the Roman soldiers micked Christ, taken any opportunity to dress as the dead - to celebrate death, could be potentially harmful, it certainly is not edifying .  Choose to celebrate life instead.

Trick or treat . . .Let me treat you to the gospel of Jesus Christ.

Addressing Access Issues

A day in the like of an artist

The first access issue I face each day is . . . How do I get from A to B?  As well as living with Cerebral Palsy, I have epilepsy, meaning I can't just jump in the car and pop to the art shop for supplies. The typical day means a support worker arrives about 8 am to assist me to get ready for the day, whatever that may hold.

Like everyone else their is more to life than creating art. My disabilities mean squeezing in medical appointments, between art class, working on social media marketing, coffee with my neighbour, networking, grant writing, the accounts, paying the bills and juggling all this around four support services and sixteen workers. No sweet!

And most days I do this with my head held high. Its been a BIG year, with my first solo exhibition, traveling interstate with my artwork, and more and more artwork selling.  Sadly ArtISabilty has had a few bumps, but we're still out their making noises, with two events to finish off 2016!

I am still deeply passionate about increasing the participation of people with disabilities in Ipswich.  As an artist one thing I do well is shine!  By exhibiting and selling my artwork, I am saying disability doesn't need to be a barrier to employment, achievement and even assisting others.

However accessing the community even for me remains a challenge.  The major challenge sadly is dealing with social acceptance and building an inclusive community. I am realising the key to Improving all access issues, is challenging social norms.  It's not the norm for people living with disabilities to work; its not the norm of people with disability to be in management roles. its not the norm for people with disabilities to access the community independently...

Well hello! Your finally realising I not normal and I don't want to conform to social norms.  Yet daily society reminds me or the norms, where's your carer.  It takes energy and courage to navigate foot paths, traffic, building and toilets.  I try not to focus on what happens if I have a seizure.  With my seizures ones again unstable I am limit to accessing the community with others.

ErrrrH! this means using a telephone with a communication disorder, explain yes I am very aware I have a disability, but I am the manager, no my cat can't talk and I the only on here.  I'll call you back . . . Well be sure that company isn't going to provide a quote. Dealing with access issues doesn't allow you to submit grants late while you wait for quotes.

I smile and feel a wonderful sense of achievement despite the daily deconstruction of barriers eventual I achieve my goals. I am relicant and resourceful.

 However the artists I work with are still struggling with the traffic, footpaths and toilet doors the can't open. Lack of affordable transport options still lock them out for the community and some remain voiceless.

You can assist me to address the many access issues in Ipswich by purchasing Christmas designed by the artists I work with. These can be purchase through my online shop.

NDIS Reform

The two key words for understanding the NDIS reforms are "choice" and "control". The National Disability Insurance Scheme seeks to give individuals and families self-direction in determining the own lifestyles. Until now this has not been possible, as 'funding' was tied to a region not individuals and their individual and family needs. The key objective of the scheme is to increase participation rates in community life.

It is important to note that the agreement between each state and the federal government is different and when accessing information from the Website you click on the state in which you live. Todays post is about reform.

For those living with disability it is easy to get caught up with the changes needed under the new funding arrangements, our needs and preparing our plans for the National Disability Insurance Agency, we lose sight of the reform goals themselves.

The role of the NDIS is to assist people with disabilities and their families 'to live their best lives.'

The NDIS is a reform for all Australian and seeks to raise the equality of people living with disabilities with the peers. At policy level this is about social reform, but I feel the sector has lost sight of these as it struggles to grapple with the complexities of changes at grassroots level.  We are all flying on the edge of our seats.

What trouble me is social reform needs to be address at community level and like many policies people do not engage in discussion unless it affects us.  The irony is the NDIS is there in the event a person acquires a disability. Its great to seek the government tackling things like underemployment, aging population and encouraging independence, but until social inclusion issues are address the uptake on accessibility improvements to business, housing and cars will be slow. 

There has been little conversation other than facebook in regards to building community awareness, community engagement is only possible if everyone us open to changed.  If the public perceptions is one for "People in need of help" . Then things like employment opportunity and leadership roles are not going to evolved. 

The missing ingredient is empowerment. To make choices people need to be informed and understand all the options and the conquences of each choice. More encouragement is need from parents and carers for people with disabilities to have a go and the culture to protect and 'care for' people with disabilities is still very strong.

The funding changes are being rolled out but is the social reform keeping pace.

 

In quest of transpancy

I remember a teacher in high school saying we get the politician we deserve.  Even back then I remember thinking it was a crack pot statement. What I didn't realise back then was the degree of lobbying and policy research that happens behind the scenes. We only hear the debate that is release in the public domain and that which the media choses to release.  

Lately I've been surprised by the different styles of reporting by the commercial stations and the ABC. Every entity has a political agenda whether they admin it or not.  I no longer view politics as the apparling behaviour the media reports.  The real politics in this country occurs behind close doors, before the parties come out to sell their policies to the Australian public.

I remember not so long a go I felt hopeless about the future of this country,  as if my vote didn't count.  I alone could not change the forces that drive this great nations, basically I realised the media and in particular social media that run the nation. 

The statement my teacher made all those years ago were ringing true.  The majority of Australians are lazy and let the media direct their votes and I was in danger for becoming another member of the mob. Luckily I joined the Leaders for Tomorrow Program which open my eyes to grassroots of politics. Policies are formed at grassroots level and the Every Australian Counts Campaign proved that citizens can challenge government policy and lobby groups can at least hold the parties to be transparent. For too long we have allow ourselves to be spoon feed.

I can work with members of any major party provided I do my home work and read the policy documents. I am struck by may key campaigners who have never sighted a policy document.  We certainly have the policies we deserve. 

I am entitle to ask the hard questions and I am entitled to an honest answer. If I am serious about grassroots politics, I need to do the hard yards and learn the skills of a diplomat.

Recently I joined the Get Up crew, all I want is transparency. 

Addressing Access to Transport

Firstly, I like to acknowledge the significant improvement in the public transport system in access for those living with disabilities introduced by the Queensland Government. As I have shared access in not just, providing physical access to venues, transport and facilities.  Access involve a whole range of issues, which Queensland Rail in now acknowledging. Including portable ramps, hearing  loops and brail information.

However many transport access issues are around 'location', 'timetables', time frames and affordability.  Access to transport us a major issue in the Ipswich Region and its about more than providing accessible public transport.  The access point is understanding the complexities of issues that people living with disability face.  Addressing these issues is difficult because of myths that exists in the disability sector itself.

• The mobility allowance and taxi subsidy scheme covers additional costs of transport.
• Public transport is an affordable alternative for those living with disabilities.
• Use of public transport increase independence of people living with disabilities.
• Every person living with disability can use public transport if supported by a companion.
• Public transport fits with the schedules of people with disabilities.
• People with disabilities have no time constraints.
• Transport service providers suit all people and client can determine pick-up times, to fit in with their complex support needs.
• Transport service providers are understand of individual needs and converse well with those with communication disorders.

In addressing transport access needs lets not pretend the issues are simple to identify and a one size fits all approach will not address access issues.

Locations and Timeframes

Location, location, location . . .  In the Ipswich region, particularly in outer areas is not always available and where it is not all people with disabilities can access it independently.  Most people I know who need support to travel independently, have limited support session and where multi transport modes are required bus/rail/bus travel time restrictions rule out public transport, as do commitments that occur outside business hours.  There become a time in the evening where safety issues need to be consider, especially when people are walking home from train stations.

At some point peoples residential address becomes and issues and create barriers for those unable to drive, either through lack of service to an areas, safety issues or time need to  travel by public transport. The introduction of community transport services has vastly improved meeting the areas needs.  However not everyone qualifies for these services and some are let to pay full costs to services.

I had found the introduction of these services has ease the demand on traditional taxi services and the demand for Maxi Taxies. However wait times remain excessively long in peak hour.  The pulling of funding for these services by the Queensland government prior to the commencement of the National Disability Insurance Scheme places demand back on the taxi companies and increase peoples transport costs.

Where support workers using the own cars to transport clients has provider an alternative for people living with disabilities, this funding has too been with drawn.  This bring people with disabilities to a point where at some stage during their week they will be locked out of community participation.  With this in mild I am launching my annual transport for artists living with disabilities fundraising activities.

Our 2015 Designer Christmas Card Ranger is again available and can be purchased online through my Esty Store.  The link is on your right hand column and Doodle n Dribble will have them available at the Railway Workshop Meson Twilight Markets on Friday 21st October.  

All cards are $ 2 each!

Lost in Transit

Those who know me, known access to transport for those living with disability a particular hobby horse for me. Any service provider in Ipswich will tell you the availability and affordability of transport is the major barrier to community participation for those living with disability. The key objective of the National Disability Insurance Scheme is participation.

As an artists I do not keep regular business hours and many functions are hosted after 5 pm. Going out at night is always stressful and a real deterrent for me. Assuming I arrive on time, the concern is always will there be a maxi cab available at the end of the meeting or function.

About two years ago I decided it was less stressful to take my manual chair out, although more exhausting than being told their we no maxi drivers on in Ipswich that night.  Business hours are just as frustrating.  It is nothing unusual to wait 2 hours for a cab. Try planning meetings around that! 

Fortunately for me I gained confidence in scooting around town on battery power. This option is only available due to my location to the CBD.  As an epileptic public transport is not too much fun unaided.  Imagine a bus driver if I had a seizure on root. There is a myth that life for those with disabilities is not stressful. After all this is the stress my career carriers. Another myth, all people with disabilities have a career.

This is not the only access issues when transport is involved.  add to this the layer of my communication disorder and people wanting to confirm destination  with a career and some days end in meltdowns.

Some of the issues around transport for others are:-

• residential address and access to public transport.
• services and community activities are not all conveniently located.
• Travel time - not matching support sessions times. e.g bus/train link up makes arrival times for activities not possible.
• Areas with no public transport e.g Lowood
• Medical reasons why public transport can not be accessed.
• Transport services not fitting in with support times. 

Life is never as simple as travelling from A to B.  In the transition to support under the NDIS we were promised no gaps in service delivery and yet funding for transport alternatives has been pulled. I  now pay 80 cents per km to get from A to B.  Only when traveling in cab is transport half price.  Yep affordable on the DSP - not!

Transport continues to prevent community participation for those living with disabilities.

Anyone coffee?

Deb's Roamings

These were exhibited at

Drawing Point Gallery

203 Brisbane Street IPSWICH

In a collaborated exhibition

'Barista;

Doodles and Dribble

will be at

Railway Workshop Museum

Twilight Markets

October 21

5pm to 9 pm 

Coffee Mugs $ 15

$ 5 for set of 10

Tote Bags $ 10 each

Deluxe Tote Bag $25

These are also available online

Deb's Doodle Treasures

Why the Change?

If ArtISability was so successful; Why am I changing the format? The format change is about returning to my original vision to support artists living with disabilities to engage in the life of their local artists, not to reprocate services already available in the Ipswich Community. In a way ARTisability achieve my personal goal to reconnect with other people with disabilities.

My ultimate goal is to assist people with disabilities to participate in community life and raise up people with disability into leadership positions. Many support services currently support people to enjoy art and craft activities. The CPL runs a support art studio where artists can develop their skills, create new work, exhibit and sell their work.

However as individual artists those living with disability in Ipswich have no support to extend their professional skills. All artists living in Ipswich have to travel to business to undertake studies that will provide them with formal qualifications. Qualifications you need to work in the Queenslands Arts Industry.

In terms of access to education every visual arts student faces access issues, for those with physical disability were a left to founder to develop skills in less formal settings. However that is just the beginning of the access issues for those living with disabilities.  We live in a beautiful historical city, where many buildings are no go zones.

People do no need the use of their legs to create beautiful art. Yet the hugest barrier exists in convincing, the Ipswich arts community that this is possible. 

Running ArtISability workshops has gone along way in highlighting the barriers for artists with disability, but it has not allowed artists to be totally include.  Even those who support my program think building peoples self esteem is the essential tasks. Imagine if I suggested that concept to the indigenous community.

Through workshops Artisablity can only offer very limited choice. The reality is we don't add a great deal of options in the visual arts field.  The switch to a mentorship bases program offers both choice and flexibility for artists of all abilities.  It uses local artists with skills, knowledge and networks to connect emerging artists to our vibrate arts community.

Ignite Artists wants to employ local artists to mentor artists, passing on both artistic skills and profession skills to allow individual arts and our arts community to grow.  Each of us has something to offer those just venturing into the arts.  We can all support, encourage and connect others.

If you are interested in being involved in the network in anyway. I need to know in the next week.  I wanting to give artists the support they need to take their work to the next level.

Please email us at admin@igniteartists.com.au so we can at least register your interests.

Plugging into life!

I don't know about you but . . . generally my toast cooks faster when the toaster is plugged in. Life is like that too! If your sitting at home waiting for that once in a life time opportunity to come a long it's probably never going to arrive.

I been asked how do I know what's on around town?  Well. . . My short answer is I am plugged into life! My personal and professional networks are a source of information sharing. 

Hey Deb are you going to the Springfair tomorrow?

Oh, I saw that advertised in the ALARA newsletter, but I am off to a poet's breakfast. . .

If you ask me Ipswich is a happening thing and has so much to offer. Did you know Arttime currently have a art competition for coffee lovers and Kitch in the Switch in on in the Ipswich City Mall.

Much of my information comes from facebook these days, but that's because I have set up my timeline to deliver news about events I want to attend.

However when your working with people with disabilities or disadvantaged backgrounds your dependent on others to past on information, until you can get them to plug into life! Many people I work with come from disadvantage back grounds and have no access to the internet. This is one of the many access issues ArtISability needs to address for ArtISability artists to be able to compete as equals in the arts community.

So I am needing to think back, how did I connect before the worldwide web existed. Although my networks have expanded since joining the social media world.  I brought with me my friendships, family spread across Australia, colleagues I worked with.  In some ways the internet and facebook have enable me to reconnect and plug backing to my school networks and people I went to university with . . .

So in many ways, the statement I use to used with my mum before I gave in and opened a facebook account was, I live in the real world! I don't have time for facebook games and I don't meet people online . . .

So the question was where was I meeting people and how did I come to know what was happening in the Ipswich community. I guess my plugging into life happen in my childhood.  My siblings were active in sports and I either tagged along, or was a girls bradage, or out exploring with my cousins. Not always doing things we should be doing. . .

I also loved to dances so the boys weren't the only attraction at my school disco, but yes I might of been chasing one or two, ok!  By the time I finished high school I had pretty much decided I was going to live on campus while I did my degree and I was the club director of my Interact club.  Which meant speaking at Rotary functions and organising fundraising.

Looking back I'm not sure when I found the time to study. In first year I dated, attended youth group at one church and mass at another,  I was also loosely involved in the Christian Student movement; In second year I tutored Mark in Statics and visited  world expo 88; in third year I joined Student life and began traveling around Australia.

Buy the time I finished uni I was pretty much working with Student Life full time.  So yep I was very much plugged in to life at the age of 22!

And then life stoped!  I had Chronic Fatigue Syndrome and now had a seizure disorder! This saw me return to Ipswich.  Plugging back into my local church and realising I would never be employed full time again.  Luck for me for the next 10 years I remained undiagnosed and never realised how ill I was. 

I was plugged in to five different activities at church and eventually in to a leadership role and studying.  You see connections bring connections and some one at church connected me to a Christian publisher.  I spent the next 10 years working with Creative Christian Enterprises and studying.  Different writers would introduce me to different things. 

The more I moved into community the more things I discovered. Including I had chronic fatigue and fribromyblia.  Life was not treating me kindly.  I had by this time moved out of home and connected with Ipswich Respite Care who introduced me to other services to allow me to live as a person with a disability independently in the community. 

Ipswich Respite Care Services is known today as ALARA Queensland, I was also involve in the Emmaus movement. If any one had a reason to unplug it was me!  But I kept plugging in.  I have kinda excepted I am one person who will always have too many fingers in to many pies.

Networking and building contacts begins by stepping outside your front door. Joining a sports team or maybe a trip to library of a cuppa at McDonlads to read the paper.  The way to find out what's out in the world is to go looking.

What things to do in Ipswich, if you as me the tourist information centre is the place to start!  There are may activities you can do for free.  Like walking through Queens Park and visiting the animal enclosure. All completely accessible.

Did you know the Ipswich City Council its self provides a pool of resources for Ipswich Residents.  That we have a Seniors and Disability Offices.  That you can get information on parks and wild life.  Have you visited our world class public art gallery? Another free facility supported by the Ipswich Council along with Arts Queensland.

Do you know where the local play groups meet? Did you know the Ipswich library has a toddles group and a toy library?  Did you know we have a very active Ipswich Historical Society.  Have you been out to Willow bank or a Jetz football game.

People sit in amazement that I know all this stuff.  I know where to go and who to ask for help.  I certainly didn't learn all that by sitting on facebook.  If you're not plugged into life then maybe its you that needs to plug into life.

Valuing Peer Support

Our peers are those who journey beside us as we travel through life. The are the people who were respect and turn to for support and advice. This advice might be around an interest such as visual art, a business venture or major changes in our lives such as the NDIS.

Our peers form our social and profession networks.  In the arts these are the people we work with, train with and support each others artistic endeavors.  These relationships are built on mutual respect and often there are the people who know us the well and desire to champion us.

Transitioning to the National Disability Insurance Scheme for some is a very exciting time. These people and their families are excited that finally they will be able to make choices about what their lives will entail. Choices around accommodation, where they live and the people they live with.  Many people with disabilities have been given no say in where they live or who their house mates are. 

Others are considering work and study options for the first time and young people with disabilities are able to chose mainstream post school options.  Many are deciding to go on to university knowing they will be given the support they need to successfully complete their studies.  Or knowing that supported workplaces are not the only option and the government will assist employers with the costs of work place modifications.

Some are excited about the opportunities around communication and access to information technologies allowing them to communicate with the outside world for the first time.

For many families living with disabilities from those about to start school to families who have adult children in their late 40's and early 50's it's a time of hope, that under this system we might be supported the way we need to be supported. Many have had little or no support until now.  Others have made the unthinkable decision to place young people with very high support needs into nursing homes. There hoping for a more fairer system where people are supported to embrace life instead of just existing . . . waiting and hoping for 'normal'

Yet other live with despair and mistrust. Their have the hopes and spirits raised before.  Murmurs of changes . . . They've seen My Life, My choice come and go, realising it was merely a name changed and those who entered this system were in fact disempowered altogether.  Here's the service or go without.  Again feeling cheated and deflated.

For many living with disability the do not know what choice is.  A placement in accommodation was made.  Meals were prepared without consideration and staff pushed for time grab close out the top draw. Many concerns for these individuals exists under the NDIS.  Even family members despair about improving life for adult siblings.

Another think who gives a stuff, just go away and let me live my life.  Life is what it is! I didn't asked for change and I certainly not doing paperwork for a government I don't trust. 

Even those of us working in the sector pull our hair out not understanding all the changes ourselves yet needing to cost what a service actually costs so people with disabilities and their families can make informed decisions. Things once covered under DSQ are not covered under the NDIS.  Things many people with disabilities won't comprehend.

Wherever you stand or roll on this continuum the changes under the NDIS are now being rolled out.  Time for sticking your head in a bucket is running out.  If you want to continue to be supported under the National Disability Insurance Scheme, you will be speaking to a NDIS planner about your NDIS goals and how you want to achieve them.

Any change whether it is positive or negative is a stressful time in our lives. Simply because it creates uncertainty. I certain feel likely I am feeling like I am riding a roller-coaster most days. This is one journey, whether your a person with a disability, a parent, parent/carer or guardian of someone with a disability you don't want to take on your own.

That's why I am thinking a peer support group is a good idea. Your peers and the people who champion you, know the fear and the stress that the transition to being supported under the NDIS first hand.  The is a journey we can take together.

Even though each of us will take a different path, that niggling feeling of how do I know I am making the right choices?  Will be shared by each of us!

Things to remember:-

• The NDIS is a game changer
• Out is someone else deciding what you can't do and deciding what help you will receive.
• In you and your family now have choice and control.
• You can choose how you want to be supported
• When you want to be support
• By who you want to be support
• And even how you want your package to be administered.

What your package will look like will be determine by you the participant and your NDIS goals.  The NDIS participant is the person living with disabilities.  So the participant's goals and plan is around the participant's goals not the goals of the family unit. However certainly both the participant's and career's statements need to address any concern's the person's disability has an impact on the functioning of the family unit. However in the main the NDIS is about making the participants life the Best it can be!

So it is important to know that the participant must attend and direct the meeting with the planner.  Regardless of what their function level is. The NDIA will certainly listen to the views of others at the table who are supporting the participant, but the planners role is to ensure the participant's goals are meet.

When the participant meets with their planner they will choose who they want to support them.  This is not automatically the person's full-time carer or guardian. If the participant does not invite you to their planning meeting, you can request to speak to the planner and voice any concerns about aspects of the participants plan.

So how do you determine your NDIS participants goals.  When we use the word goals we usually are speaking about something we want to achieve.  For an artists a goal might be to sell a painting.  So the NDIA aren't expecting goals like playing ruby for Australia. But hey! Don't let me hold you back!

We I advise on writing goals, I talk about goal areas.  So your NDIS goals should relate to the following areas of your life:

1. Accommodation: Where you live and who you live with and any changes you might like to occur in the future.
2. Schooling, education, study or Training: This will depend on where your at in your lifespan, although I would argue your never to old to learn.
3. Work - Employment; self-employment; volunteer work or community work. Selling your artwork, falls under self-employment.
4. Health & fitness: Hear I would include anything related to keeping healthy and active. You might have a separate area for sport.
5. Sport: Here I am thinking about you playing a sport like tennis or maybe a rower.  Watching sport or following you favourite football team, I would list under recreation.
6. Recreation: This world including your hobbies and interest and the social activities you enjoy doing.  Like playing pool at the pub with your mates or going to see a musical. You might like to include your annual holiday in here too.
7. A goal area we all will have is how we want to have our NDIS package administrated.

Choices around the administration of your NDIS package. (This is who you want to pay for your support services including transport on your behalf.)

1. The National Disability Insurance Agency can pay your nominated service provider(s) on your behalf. (For most people this is how it works now and their will be no changes to your own administration responsibilities).
2. You can chose a host provider to hold the money from your package and pay your supports as outlined in you NDIS plan. (This will not seem any different to what happens now. Only you have the choice as to whether a government agency or a private company does this for you.)
3. You can choose to self-direct your own support and support services through a host provider of you package.  This means you will direct the host provider on who to pay and how often.
4. There are many models you can use to allow you to self-direct your own funding package.  I recommend you take a look at the NDIS Website.  Under the self-directing/self managing option you can do as much or as little as administration of your funding as you like. However you may want to think about your currents skills, if you need to build your skills in order to self-direct, then the NDIS will help with those costs.  I think another consideration is time and stress levels.

How you chose to have your funds administer becomes a NDIS plan goal, as your package will need to include money to pay for all your administration costs. I think some people assume by doing everything themselves they will save money and have more money to spend on direct support.  This is definitely not true.  You will have additional costs if you chose to employ support workers directly, costs like police checks, blue cards, veachal inspections. insurances, and taxes.  You might also employ an accountant.  These are necessary supports under the NDIS.

So this is how you goals will determine what your support package looks like.  When we discuss support we are no long talking about hours or accessing services. Under the NDIS the 'term' support incorporates a whole range of needs; equipment; services; training and experiences you may currently be unaware of.

Once all the money needed for administration costs, staff training and insurances went directly to the service provider. Now all the money goes directly to the participant and service providers will bill participants for the share of those costs.  Participants and families who intend to self-manage, need to ensure this costs are included in the 'supports' they ask for.

If the supports are not covered in your NDIS goals and asked for then the will not be included in your package so let me give you an example of how this may occur.

Your participants goal is to work at Mcers 15 hours a week.

How your participant achieves this goal is:-

1. A support worker arrives to support the participant to get ready for work. (that support will vary according to the disability).
2. Support worker walks the participant to the bus stop and see them to get on the bus.
3. After the participants shift the supervisor walks the person to the bus and assist them to get on the right bus.
4. A support worker meets the participant at the other end.

These are the 'supports' to be included in the package to allow the participant to achieve their goals.

Rules for writing NDIS Goals:-

• Goals must be clear and specific.
• Goals must be measurable - we need to know when the participant achieves their goal.  i.e. The goal to finish year ten is achieved at the end of the year. 
• Goals must be achievable.
• The NDIS will not fund supports need for goals that may put participants at risk of harm.

Those you fear letting people with disabilities chose their own goals and direct their own supports, must of imagined the law books were going to be tossed out the window.  Participants who self-manage are bound by all small business laws; all employer regulations including paying awards wages and penalty rates.

There is much to consider as you write your NDIS goals and selected the team who will support you to transition to the NDIS. So of these will be your peers.  Whether as a carer and/or parent who is not involve in the planning meeting itself you still need to gather your peers around you.  You to need the support to cope will the person you support making their own choices.

I recommend that we all seek out peer support as we develop and put our goals and plans on to paper.  Wether your excited, frighten or bemused by the NDIS you never know where there's something you want to natter over with a friend or too.