Friday, November 24, 2017

The Right To Life (ndis)

The rights of all Australians

Did you know the a human rights movement gave birth to the ndis?  Australians living with disabilities and their families fought to give every Australian a voice - Every Australia Counts and thus Australians with disabilities have the same rights as all Australians.

Discrimination exists when any member of a community is treated different under common law. Australians living with disabilities have the same freedoms as others.

To experience this freedom they need to be given a voice, representation and offered opportunities. These are the key areas or reform for the National Disability Insurance Scheme otherwise known as the ndis. Traditionally those living with disabilities, including family members have been sidelined. while others have decided what is in their best interest.  Under this model of 'care' and 'support' individuals have experience; neglect, abuse, poverty, lack of justice and overall a lack of voice.

Anyone who disagrees the medical model of care and support failed Australians with a disability by the hundreds and thousands has not experienced disability as part of their daily life. The move to support under the ndis should empower families and individuals is to experience greater freedoms and give them more choices. 

Not just choices around who supports them with daily living, education, activities or accommodation, but the choices that every other Australian makes. These are lifestyle choices:

  • Where to live within Australia?
  • What school to attend?
  • What musical instrument to play?
  • What profession you chose?
  • Who you live with and where?
  • Friendships and relationships?
  • Sports for fitness, competition and enjoyment?

The ndis should support you to live your best life!

Lifestyle Choices

So as an artists I am not likely to earn enough money to build a waterfront property on the Sunshine Coast. All of us will have boundaries or limits to the choices we can make, based on things like our education, experiences, training, employment, family support, our natural support systems and the some of life's experience. 

However at birth we are all born equal, thus as equals we as Australians have a duty to ensure every individual regardless of disability has the same opportunities.  Placement in care and restricting education opportunities dwindles the choices an individual or their family can make.  It excludes them from the community rather than embraces their individualism and gifts.  It sends a clear message of dis-empowerment.

Even those with the most profound disabilities have a right to grow up in a family environment, and thus family members have the right to be provided with support and respite to function as a family unit.  Parents should not experience lost of income due to a child's disability, nor incur costs to ensure the child with disability to access the community as their other children. 

At base level  the ndis is about addressing access issues so we all are given the same opportunities under Australian law,  Somewhere between the Every Australian Counts marches and the design of the ndis it became all about the daily supported needed, equipment, therapy needs, and improving lifestyle options. Together with the potential services they would purchase.

What happen to the right to live a lifestyle of our choice?  Why have those conversations ceased? The lifestyle choices we make will very much determine our ndis goals and the daily activities we engage in.

Your lifestyle and aspirations are where your ndis goals will emerge from. As an artists I am not going to ask the ndia for support to training to play basket ball at the Paralympics.    Ok! So we don't get to chose where we are born, what our disability is; its impact on our daily life; our parents, our abilities.  However these factors  not determine our ndis goals. 

We don't get to chose the cards we are dealt 
only how we play them.

My friends and natural support group

My parents chose to give me the same opportunities as my siblings. In terms of education and employment I had the same start in life and I supported by my family embraced them with both hands.  As a family growing up in the 70's we chose the road less travelled.  There is no reason why families with children born with cerebral palsy shouldn't be offered the same opportunities my parents gave me.

A child can achieve anything until proven otherwise

I am not saying every child should attend mainstream schooling, rather that parents have the right to be supported to make choices around the child's future.  That is there education,  early intervention programs, therapies and equipment that will maximised the independence and opportunities in the years ahead. 

The more a child is able to do independently; the more opportunities they will have to chose from in the future.  By limiting access to support at birth we are effectually limiting future opportunities. While we argue about the ability of people with disabilities to make informed decisions, our attention should be on ' how to ensure their rights in order to give them the best opportunities in life.'

What if someone decided not to let me draw?

What right as a society do we have to limit others, simply because they have an impairment at some level?  What if someone said you're never be as good as Darcy Doyle try something else?  Guess what? I don't want to paint like Darcy Doyle, nor is it the choice I made.

So my individualism and my talents help determine what choices I can make.  My biology marks meant I was never going to allow me to be a biology teacher. There are natural boundaries to the choices we can make about education, training, employment, sports and recreation so why do we need to create more?  Are these really for the protection of those living with disabilities? Or about the social norms of society?


The time for change is now. That change is to empower individuals living with disability to make the own choices and support them to live a life without limits.  This is the change that should be occurring under the ndis.  People with disabilities living real life.

My ndis Planner asked what support I needed for my life to reflect my peers? My peers are not carpenters or lawyers, so my life will not be that of a talent lawyer nor Darcy Doyle. m>y peers are local artists in Ipswich, scrapping up the money to put our next art show on the wall.  So the supports I asked for is around achieving that goal. 

I think  now the roll out of the ndis is happening and participants are sharing their stories we are grasping the new era of support and how to empowering choices of individual and families.

Choices created by ndis should involve the different aspects of you lifestyle.  This will include:-

  • Your family life
  • Friendships and relationships
  • Where and with whom you live
  • Hobbies and interests
  • Health and fitness 

These are the things that should be determining the daily activities you will ask the ndis to support.  Your ndis plan is not about your disability and what you can't do! Rather your plan will focus on the things you chose to do and the setting in which those activities will occur.  What support you or your family needs to do you choice of activities will determine the items in your ndis plan.

Once you have your plan approved, you can there chose who will provide your supports and services to enable you to live your best life. 

Making Choices

Under the ndis the purchasing process of your supports has changed. Previously you may not had any say in who your service provide was and what services they provided you with. In Queensland over time the purchasing of services has change.  You might recall signing a service agreement with a provider or individual supports, in home support, center based supports or other services for X no. of hours per week. These agreements were generally reviewed every 12 months.

Under the ndis you can now chose you provider(s) and what services you will purchase from them.  You might choose to purchase all your services from one provider or you might like different providers to provide different services.  This is your choice one provider or many providers.  You will establish an agreement with each provider for a period of time you decided. 

Service provider can no longer make all the terms of your agreements as a purchaser of a service you have the right to say I want to see how this agreements goes for 3 months. The reality is most people will chose to stay with current services. Remember not everyone asked for change. 

Clients or participants as the are now called have the right to change their minds and definitely have the right to say this is not good enough.  Most providers require you to give notice if you want to break your agreement, otherwise there may be fees involved. 

Under the ndis their are several ways you can conduct you transactions to pay for the services you want to purchase.  This choice may affect some of the providers you can purchase form.  If you have elected the ndis to pay for you services directly then you will need to chose an ndis approved provider.  

You can find an up to date list of providers on the website, as well as an ndis price guide. This is the maximum about a provider can charge.  You might chose to shop round to make better use of your funding.

The second way to make your transactions is through a broker. In the disability sector these are known as Host Fund Providers. These providers with hold you funds in an account and assist you to make your purchases from different service providers. A host provider should let you make an independent choice about what services you purchase.

You will find that providers might specialised in the services the provider. i.e they might only provide financial and administration supports. Or there are many larger service providers that will offer you a one stop short for all your ndis needs.  You will need to think about what is right for you and/or your families needs. 

The ndis generally recommends that you select a different host provider to your other service provider(s).  You might want to think about if the host provider will have your best interest in mind.  However if you decide that a larger ndis service provider for all your ndis needs, then using that provider as your host provider may cut down on red tape.

This choice has been offered because many people have a healthy distrust of governments,  so they may elect to use a host for their payment transactions.

The last option will give you the most choices.  This known as self-management. This options puts you in direct control of your services purchases.  There are many management options for you to chose from.  From the basic Plan Manager who will do everything after you service agreements are signed through to you applying for an ABN and setting up a business to employ your own support team. 

As you can imagine the are many different variables in between.  Some people have been mistaken that this will reduce the costs of supports, to enable them to have more supports.  However with self-management comes more responsibly and costs.  The rate per hour that your provider charges you is not the rate per hour support staffed are paid.  Services have to cover the staffing or management,  computers, offices expenses. rates or rent, electricity, cars and busses, insurances including public liability, worker cover, safety checks, accountancy fees, audit fees and recruitment and training costs.

If you chose to completely self manage then some of these costs will be incurred by your business.  Regardless of how you want you funding to be administrated the ndia must provide you with the funding of those costs.

Readers of my blog will know initially I chose to partial self-manage through a Plan Manager and engage my direct support needs through a support service provider I can also elect the supplier of my equipment and assisted technology.  The other option that self management gives you is to engage generic services.  These services do not need to be a ndis registered provider,  It could be a private physio or you might elect to pay a cleaner or someone to mow the grass instead of a support worker. 

Other care/support workers work under their own ABN and you can chose to engage these as needed or in the event your support workers call in sick.

Hopefully by the time your ready to purchase your supports you will have thought through what it is your looking for in a support provider, service or support worker.  When I received my ndis plan it was a bunch of figures which someone in some office punched up.  Having survived for many years with only 12 hours support the adjustment in self managing has been overwhelming. 

The Transition 

In the beginning I had a sense of urgency to transfer my services and make purchases.  I was keen to activate my power of choice.  Once you transfer to the ndis then all your supports received after the date your plan was approved will be charge to your package. This does not mean you suddenly need to make changes to your supports. 

I now know it means you need to inform your current providers your plan has started and what you think for future transactions with that provider might be.  Most service providers will supply you with an interim agreement, this could be two weeks o two months depending on the types of changes you package will allow you to make.

Just having a huge jump in the no of support hours I could access was overwhelming suddenly I needed to guess how much direct support I wanted and when.  I admit I was so excited by the idea that my support was now all together and created me with flexibility.  All I wanted was a weekly routine one service provider and a end to 20 different people supporting me one way or another each week, There is no rush and it you changed your mind that is OK too.

The ndis should be ensuring protection to the right to live your and your families life, in a manner you chose not the way others think you should. Under the ndis you have choice and the purchasing power to purchase the service that will enable to live the way you chose.  

Where you feel those choices are not being respected or herd, you should lodge a complaint with your service provider or the ndia.  If your choices aren't working the way you hoped you can change provides or request a review of your plan.  If you feel like nothing has changed or no one is listening then you can seek support from a advocacy services.

The ndis should be about those living with disabilities, individually and collectively finding their own voice.


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