Saturday, August 12, 2017

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 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!

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