My ndis dreams seem far, far away!

 

Times are changing . . .

but attitudes take longer . . .  

 

 

The National Disability Insurance Scheme known as the ndis is not a disability support funding scheme.  The ndis funds much more than the care and support people with disabilities and the family need to live day by day.

 

It is a scheme to enable people with disabilities to live a life of there choosing.

 

People can now chose their own goals and how to achieve them . . .

 

I want to go to university . . .

 

I want to swim for Australia . . .

 

I want to move out of home . . .

 

I want to learn how to use public transport . . .

 

I want to sell artwork  . . .

 

 

However the ndis gives participants and their families a whole range of choices around:

• What they want their lives to look like.
• Their daily activities.
• Ways to improve their lives.
• Who supports them and how they want to be supported.
• What times they want to be supported.
• The support services they want to access and how often.
• Therapies, technology and equipment to maximised their independence. 
• How and by who their funding is managed.

My life's goals and thus ndis goals centre around art:

• Building my art practise
• Belonging to the art community
• Working as a national arts leader

The ndis is essentially about building participants social and economic independence.  This involves things like:-

1. Independent living
2. Learning knew skills
3. Employment, community work and volunteering
4. Sports
5. Leisure activities
6. Hobbies

These are choices we all make a we grow and develop as human beings.  This ndis is not to support people living inactive lives, sitting a home or nursing homes.  It is to support people to be as active in the community as their disability allows.

 

This is something the entire community is responsible for.  It about the community being ndis ready and people with disabilities and their families having access to the parts of the community that is most important to them.  That might be the movies or the pub or even the local greyhound track.

 

"To create change the community needs to be ready to embrace change!"

 

Are you ready?

 

Is you business ready?

 

What if someone with a disability wanted to join your cricket team. Is their public transport to get them to practise and games?

 

If you broke your foot and you couldn't drive for a few months. How would you get to work? the doctor? physio appointments? do the shopping?

 

People like to think the lives of people with disabilities are different to the general population.  This is no so. People with disabilities go to school, play sport, have friends, go to the movies, enjoy arts & crafts, have relationships, buy houses, drive cars, get marry, have jobs and even have kids. Just because you don't have a disability now doesn't mean you won't have a disability in the future.

 

If you acquired a disability, how much do you think you life would change?  Have we built the type of community you would want to live in if you became disable?
 

 

  

Not only are my choices around art, but living independently and working as a national arts worker, I love traveling and exploring new places.

 

In developing what I wanted my life to look like under the ndis and setting my ndis goals, I gave much thought into what I wanted my support system to look like.  That takes me one work to describe . . .

 

Flexibility

 

• flexibility with the types of supports
• flexibility with support times and days
• flexibility from week to week
• flexibility to travel
• flexibility to use agency staff interstate
• Most of all flexibility around my art practise. So juggling appointments and art deliveries was easier.

 

To do this I choose to self-manage though a plan manager and select the service providers that I wanted to access.  Mission accomplished. I was able to set up my own weekly schedule the way I wanted, for the first time since I began needing support 18 years ago and I love having only one roster.  This is the thing that is really working well for me.

 

 

What's not working for me at present is community living and being part of my community and thus community participation.  To be fair this is lately due to my poor health. Not only can I not go out on my own, but I have very limited energy. 

 

Now I not able to travel in my supports workers cars (due to the provider I have chosen) it takes so much more energy to travel on public transport. Needing longer times to travel and I have on managed a handful of appointments in the first 6 weeks. For two of these appointments, my current support team could not meet my needs so, to ask my parents to take me and I had to ask my gp to do a house call. 

 

The ndis has not been what I hoped.  I am restricted because my support workers don't want to drive their cars or park in shopping centres where the might get damaged.  Why can't I buy a car for them to drive?  On a pension and the odd art sale . . . No!  The fact I would have to pay higher car insurance to have multiple drivers escapes them.  They don't want to increase the risk of accidents and higher insurance, but I had too that is ok.

 

Will my support and how I am support ever really be about me and my needs?  My ndis dreams feel far, far, away!

 

 

 

Moving through the NDIS Mase

 

Enchanted Forest

 

Watercolour by Deb Chilton

 

Aspire Gallery -  MAGE

 

16 August - 2 September

 

 

 

Finding my way in the NDIS Maze

Making changes to my supports under the NDIS has been an interesting experience.  I remember month's a go writing about is the grass really greener on the other side?  In my case is too early to even ask that question. But yes its a bumpy road to begin with. I am still navigating the maze in regards to transport.

 

One thing I've been clear on all along is I wanted a more flexible support service to reflect the constantly change workload demanded of a artists, we never know what opportunities are going to appear in the forest.

 

 

 

As an emerging artists I am always looking for new opportunities to exhibit my work and extend my networks. Recently I became a member of Aspire Gallery in Brisbane and this is the second group exhibition I have work accepted for. To some extent it is the galleries and curators who determined my schedule.  Is work is due by 2pm, their not going to wait around to 4 pm for my support worker to start their shift.

 

As an individual and an artists, I have never imposed limits on myself. Although at present my health is unstable so I am not whizzing around town by myself.  Not that my wheelchair is equipped to transport artwork.

 

So the most important thing for me was flexibility in service delivery days and times.  So like I share in my last post this determine my choice of provider.  Since I am self-managing, I could of employed my support workers directly.  Something I am interested in doing in the future. However I felt right now there were enough challenges and changes to juggle without recruiting staff. 

 

Also using a provider givens me the reassurance there are policy and procedures in place to protect me and my support workers.  One of the things I want to do before going do the path of engaging my own staff is to think through these potential risks and write some guideline to protect myself and my potential support workers.

 

 

Cats Exercise Class

Screen Prints by Deb Chilton

 

Currently on exhibit at Aspire Gallery.

 

 

My next art goal is to have a solo art exhibition outside Ipswich. Which will be more of a challenge logistically.  At present delivering a small number of pieces to a gallery is difficult. 

 

As an business owner running workshops for artists with disabilities per-NDIS, access to affordable wheelchair friendly transport was the single most deterrent to an artists with disability workshop attendance.  Here in Queensland this has been on of the first bumps in the road for participants under the NDIS.

 

Firstly, transport costs for people with disabilities was absorbed into the NDIS. Things like the mobility allowance which assists with the absorption of the costs were linked to the level of participation has in their local community.  The higher the level of participation the higher the amount of assistance.

 

It was thought an increase in this allowance would cover the costs participants who accessed the Taxi Subsidy Scheme.  Obviously  major decision makes don't rely on taxis.  In Ipswich many participants access transport from a transport provider such as CODI and Able Australia.  In the past the use of these services has eased finical drain on personal budgets. 

 

The introduction of the NDIS meant the funding for under 65's was pulled limiting the access people with disabilities had to these and other services like them. 

 

 

Introducing Pick-Up Australia

A new transport service supporting

people with disabilities in Ipswich.

  

However the operators soon discovered the couldn't deliver their services at competitive rates due to the business model.  This saw organisations such as Queensland Disability, Community Disability Awareness and Able Australian along with individuals lobby for the reintroduction of the Taxi Subsidy Scheme in Queensland.

 

However even in the changing landscape transport costs are still a major deterrent for community participation and incentive to gain employment. The flexible support service I choose does not provide transport to participants. Find my mobility on my own very limited out side home very limited due to illness has meant my ability to access even the local community.

 

I have opted for 2 hydrotherapy session a week.  This one activity cost more that my transport assistance allowance if I use a taxi. My case highlights a floor in the calculation of transport needs through the NDIS.  I am still hopefully trains will again be an option in the near future and my chosen provider is looking into introducing transport services.

 

Hopefully by the time I am well enough to return to work. This will be possible because otherwise it boils down to using a curiour service to transport my work, which in itself may produce limits on getting my art exhibited outside Ipswich.

 

However these are early days and I have not given up on my hopes of the freedom the NDIS will bring me and other participants.

 

 

 

 

Buyer Beware!

 

 

Living in a environment not designed for my own daily challenges isn't always easy, but it's a choice I am glad I have made.  My work as an artists and arts worker takes me all over-our great country. At country to always accommodating.

 

Now if you know me - you know I am a tough nut! Yep I admit I a bit 'nutty'.  I am the perfect example of a rule breaker and refuse to stay inside my box.

 

Instead finding ways to extend or escape the box.  This was one intended reason for my recent try to Sydney.  But someone told the box it wasn't allow to follow me.

 

 

I wasn't surprised to arrive at accommodation that wasn't accessible. What is often labelled accessible is not.  Accessible accommodation beings with a building plan.  Just like parking a car I need turning space.  Well lucky for me I packed my lightweight can and I can stand up and walk in to the bathroom, cause it was the only way in.

 

Often I will let management know the room doesn't meet my access needs, occasionally the place me in a larger room.  Most have one accessible feature, but never before have I encounter steps at the entrance to accommodation claiming to be accessible.  There were no steps on the webpage photos.

 

Although it said accessible on the website I emailed to check.  Silly me - made the same mistake quizzing them about the bathroom.

 

 

Not dreaming that this would be the welcome I would received.  I was taken back the manager of the Outback Lodge, was defensive and blamed me for not telling her of my access needs. As I had paid cash they had a no refund policy.

 

As always I tired to be positive and assured myself I could make it work.  As you can see it was not possible to get round the my room in my wheelchair, but that's nothing new to me and moving things around would help.

But still there was no motivation to unpack. . . I was over whelming disappointed.  How could I tell my friend I didn't want to stay. So I went in search of fish n chips!

Returning back to the unit exhausted I manage the step but my legs wouldn't last much longer, when a stranger offered to help "I blurted out I don't want to stay here!

 

I could not use the path unaided and felt that the pathway was so unsafe that it put my travelling companion at risk of injury.  Never have I left any accommodation before due to inaccessibility. I have discovered there are no standards when it comes to accessible accommodation

I was taken back with the correspondence with the owner.  I never apologize too.  Instead I and my travel agent was blamed.  So if you don't have a wheelchair and you don't mine rude people then the Outback Lodge may suit you.

My Choice

 

Life with the NDIS

 

The National Disability Insurance Scheme is the new system that supports people with disabilities and their family live a life of their choice.

 

There are many choices participants and families can make around the supports, who supports them, how they will be supported, what services the chose to access and what time they would like to be supported.

 

 

 

 

For me my choices we made around my creative lifestyle. My NDIS goals were around making healthy lifestyles choices, remaining independent and building my business Ignite Artists. For ever one these goals will be different.  Not everyone wants to be self-employed and employment is not possible for everyone with a disability.

 

I find myself in a strange situation.  I am unemployed due to uncontrollable seizures, but able to make a valuable contribution to the community.  Thus self-employment works well for me. 

 

 

I want a support system that supports me as an artists and arts worker. Tired of fitting work around my support times, it is important for me to maximise my supports to enable me to achieve my art dreams.

 

 

 

One of the choices I made to achieve my goals was to partially self-manage my own NDIS package.  For me this meant employing a plan manger (as this was part of my NDIS plan the NDIA provided this money).  Managing my plan assisted my a plan manager will assist be to build the flexibility I want. 

 

The Next Step

 

 

Is to select the support services I want to use give my Plan goals and budget. Some people who self manage their package will chose to employ their own staff.  This is something I might do in the future but not now.

 

 

 

Right now there are a few other changes occurring in my life and I not feeling in the right headspace to interview, employ and train a staff team.  For me at this time in my life its important to have a team around me who know me, my likes and dislikes and my needs.  My health means I am a little lest independent at present and Yes, that craps my still and some days I have cavern fever.

 

At least my provider is able to provide a flexible service around my health needs and visual art practise.  This was the most important thing I want in a service at this time.

 

 

The perfect provider isn't out there.  My advice is to think about what is the most important things you want from a provider. Is it -

 

• Support workers you know?
• Doing the activities you always do?
• Trying new things and mixing it up a bit?
• Reliable staff?
• Flexibility and choice of times? 

Once you select your provider(s) you will be asked to sign a service agreement.  Under the previous system these were 12 months.  Regardless of how you package is managed you can set the service agreement length.  One provider said if that's 7.5 months that's now my choice.  This is a service I not had access before so I a little unsure if I want one or two hydrotherapy sessions a week.  So I opted for a 3 month agreement.

 

You might not want the hassle and you might want what works for you now.  Sounds logical to me.

 

 

 

Have I made the right choices?

 

                        . . . I might never know!

 

I did the best give the information and knowledge I have right now.  The great things is I not locked in for 12 months and I can change my mind or ask for more help at anytime.

 

If you think you go it wrong under 3 months contracts you can start planning what you want to change. 

 

I hope is in 12 months I know what has worked and what hasn't.

 

This is my journey share yours too!

 

Let's Talk About Rights!

. . . The UN charter of human right tells us that all humans are born 'free and equal'. When we think of failure to ensure human rights Australia is no thought to be high on the list of countries that are neglected  this area. 

 

 Unless your a member of the UN humane rights committee.

I am tired of hearing minority groups being referred to as a hindrance, resource drain on society and a social issue that will not go away. Whether your indigenous, refugee, long-term unemployed, have disabilities, or just growing older some members of society see you as a drain on the public purse.  

And we know there are a minority that cheat the system, just as there are tax cheats.  Many in these minorities are tax payers and do not rely on welfare.  Welfare reform does not address the issues of injustices faced by these groups and the structures of society that continue to create barriers to economic security, housing, education, employment, well being and access to having a legal voice. 

Women with intellectual disabilities are twice as likely to be assaulted, if they are also indigenous it becomes 4  in 5 women.   Victims with intellectual disabilities are often not believe or there evidence or testimony is not usable in court of law.  I know this first hand having gained the courage to go to the police I was encouraged not to make a formal complaint due to perpetrator  potentially having denature.  Being intellectually incompasiated makes  you unable to defend yourself.  You are neither guilty or not guilty.

No body choses to be born with a disability, escape a war-torn  country, their heritage or to grow old. Luckily involuntary euthanasia is illegal. Yet it you lucky enough not to be born into what is considered to be the norm, you can help shape this great nation and strengthen the structures that continue to segregate people and limit their choices and their say that no access to the justice system is a cruel natural fact of life. I hope you never become disabled or develop dementure where you will experience the reality of living life without any restrictions on your choices. Loss of mobility and reduction in intellectual functioning can be  cruel. 

Even lost of the ability to drive means a limit of independence and loss of choice.  Many of us will need some level of care as we age. This will result in others advising us on our health needs and care needs.  At times it will seem like our rights are taken away.  These same rights which have never been granted to minority groups in Australia.
 

 

We have bought the lie of uniformity and the way of the majority rules. We have allowed some to have more of a say in determining what is right and who can have access to things like education, affordable housing, employment, health service and access to the justice system itself.

 

I hope we to who are often denied our rights or told to conform never stop using our voices so we are overshadowed  by small minded people who can't bothered doing their research before making a public speech.  

 

How we access education, employment and the legal system despite our disabilities are human rights Sentior Hansion



Building Ignite Artists Network

Understanding the Community Needs . . .

 

As we grow we want to provide

 

services currently not available in

 

the Ipswich region.

 

Ipswich is home to over 100

 

different armature arts & craft groups.

 

 

Most disabilities support providers

 

engage in art programs for

 

both leisure and skills development.

 

 

As well as opportunities to

exhibit and sell artwork. 

 

What people tell us . . .

 

 

Did you know artists are unable to up skill in the

Ipswich Region itself.

 

 

 

 

Did you know access issues are not isolated to those with disability.

 

 

 

Young mums can experience access issues to education

due to children needs.

 

 

 

Access to transport can be an issue for those

living in remote areas.

Not just those with disabilities.

 

 

 

A person's impairment is not

detected in their artwork.

 

 

 

 

Ignite Artists Network

 

Seeks to increase learning opportunities

 

through peer mentoring.

 

 

 

Workshops and peer development programs.

 

 

 

Support artists to exhibit their artwork.

 

 

 

Assisting with access needs of all

Artists living in the region.

 

 

Email admin@igniteartists.com.au

 

for more information.

Towards a bright tomorrow

 



 

The open of the National Disability Insurance Agency Ipswich Area office this week singles an end of a medical care model of support.  Support under the NDIS is based on the hopes and dreams of people with disabilities, their carers, families and supporters. It recognises not two people are the same and just as we choose our own pathways they people with disabilities have that same right. 

 

Some will choose centred based programs and others will opt for individual styled supports. Supports are now around your goals. If you want to learn to be more independent and catch public transport by yourself then support could be around traveling on transport to gain you independence. 

 

 

 

 Support under the NDIS should be about your lifestyle and the activities you and your family want to enjoy.  One of my goals is not to have the leave the opening of my next art exhibition because supports ends at 8pm.

 

Many people believe we will be looking for bells and whistles support.  Myself,  I just want to stop playing Cinderella.

 

At the opening I had the opportunity to share what my like looks like now, and the juggling act of accessing 4 services to provide my daily direct support needs like personal care, meal preparation and transport.  Each service has its own policies and procedures, finish by 8pm so we're not paying higher rates of pay or be unable to travel in staff cars.  Life gets confusing.

 

When a service needs to change a time... umm is it week one or two or I am simply wanting to make an appointment, life gets complicated. Not only am I not in control, most service rely on a roster team for smooth delivery of services, people who often don't know me Some tell me about changes others don't.

 

The NDIS gives me control to chose who will deliver what service, workers of choice and what time service will be delivered. For me the NDIS is not about bells and whistles it about my right to live a life reflective of my peers.  My peers are artists and we don't work 9 to 5.  We start work as others head home or to our openings or workshops.

 

   

Us creative misfits are initial to be supported in our roles.  What a waste of talent if we are not supported in the right way.  Here's some of the work from our mini exhibition at the NDIS office.