Thursday, September 28, 2017

On A Roll with the NDIS

Breaking News . . .

I have chosen to have my Exploring Diversity Doll Exhibition at Drawing Point Gallery. For me this ticks off a few steps involved in my major NDIS goal.
  1. To grow my art practises . . .
  2. To grow Ignite Artists Network and work towards an inclusive arts community in Ipswich.
That's why I decided this exhibition needed to be hosted in Ipswich itself.  I believe the way to build community is through a collection of experiences.  Fact and figures are easily over-taken by social norms.
This exhibition is not about sales (but yes the dolls will be on sale) its about creating a platform for discussion and bridging the gap in understanding. 
The second step in growing my art practice was delivering 2 more pieces of artwork to Aspire Galley for "All About Colour" exhibition from Wednesday next week.  
Ink on Fabric

Artist's Members of Aspire have a chance to showcase their art journeys for 2017/18 at the end of the year so this week I have been working on these pieces . . .
But as you know my NDIS plan is not all about art.  My other goal is to continue living independent in the community.  To achieve this goal I want to be healthy, maintain my strength and prevent falls.  Thus one of my request was access to physio and hydro therapy. 
I have had my second physio session and have 3 more booked in.  There's still a bump or two, including working my 5 sessions a week into a over crowd weekly agenda.  But yes! If you do your maths that's an hour every day.  2 sessions at home, 2 sessions at the pool and a session with the physio.
Feeling very unsure about how this will pan out, as regular exercise has been difficult since I have recovered for Chronic Fatigue Syndrome and if I over exert myself my fibromyalgia flares up. I am struggling with how to explain that to a physio who has a motto of 'no pain, no gain'! 

I believe this is an outdate exercise model.  However the latest model to come out is 'high-intensity' interval exercise. The question is am I training for life? Or am I just wanting to maintain muscle tone and balance.  With a return to health is walking again possibility?  Great, questions to ask myself!

My first cardio session ended in a seizure. As you can see this has resulted in me trying to think more clearly what my physio goals are and whether I request a new program or do I seek out another physio who better fits my health philosophy. Like support workers, physio's aren't always a good fit.  It doesn't make them a bad physio or support worker, rather our thinking doesn't match.

I selected a therapy provider that offers a range of services and purchased a block booking where I can access physio or ot depending on my highest priorities.  My current physio has been really helpful in getting me started in looking for right wheelchair. So I requested she right-up my wheelchair prescription and we can explore other things like posture.
So there's my trip for the week - go with a provider who can offer flexibility in service delivery and opt for a trail period, I feel it is important to have a good working relationship with any health professional. I went for 3 months agreement. So if things aren't a good fit at the end of October, I can stay with part of the service provider for OT and find a physio whose philosophy I feel more in syndic with.
The National Disabilities Insurance Scheme is about empowering people living with disabilities to make choices about what their priorities are, not fit a service they are assigned too.  I think many people and families who loath the package I have selected.  However for me I can see I starting to shine and I'm a lot less stressed about the structure of my supports in general.
Life is not perfect and neither will the NDIS ever be.  My goal is to make it work as best I can for me.  Partially self-managing means I can self advocate for my needs. No one knows how my body works better than me.  I have always try to work hard on providing the best investment for my body, so it lasts the distance. This includes a good diet, exercise and health maintained (including mental health) are keys steps in achieving these goals.

For other participant I know social skills and making friends is the most important part of their ndis plan.  For these people group or centre-based supports might alien with there goals better.
Many people in our community have strange ideas about how my life is lived and others with disabilities. We all like to fit things into neat little boxes. Early this year I went on a cruise.  You'll love it!  Friends and family assured me. 

As a creative person . . . I crave space and solitude, usually with a good book, this are in terrible short supply on a ship!  I also don't like noise I create enough of that in my head with my thoughts.
Anyway cruising is not my idea of a holiday. However I did had some pretty interesting conversations on board.  I meet the family and friends of a pretty saxes lady who was a mother of two.  Rachel marriage and had kids are having a stroke which left her totally depend on others.  However this has not prevented her from making friends and being part of what seems a very support community or one hell of a party animal.

It was so refreshing to watch this group of 20 family and friends holiday and party like all the others on a ship.  Rachel care is higher enough that she could of easily be put in a nursing home and forgot about.


There is a perception in the general community, that people with disabilities don't have friends or relationships and it they do it is assumed they are other participants that access the same service provide. One question I am asked get a lot is and by people on the ship was 'do you have friends?' I came up with my best reply ever!  I sure do . . . I have a habit of collecting friends. I am deeply blessed in rich, life long friendships.
I was out with a support worker today and said,  OK I know a lot of people who live in Ipswich.  I caught up with a friend who went to the same high - school today, its hard to believe that was 30 year ago.  Another friend passed away earlier in the year. Last week she would of turned 49.  Our parents were friends before we were born. Their friendship didn't last but our beautiful friends lasted the highs and lows of 48 years on earth.  These are rare gems I have in a throw-away society. So socialising is not something I need assistance with.
The other thing my support worker commented on today was lack of access in Ipswich.  With so many organisations to support people with disability you would think Ipswich was an accessible city, was her comment.
Well the places  other people with disability access may be more  accessible and suit there individual goals and needs.  However I also know organisations who work with people with disabilities have other agendas and community access is not one of those agendas.

While people with access needs are not accessing parts of a community for whatever reason the cost of up grading builds in not justifiable. Talk about catch 22 for everyone.

A Portable ramp does the trick

Historical parts of Ipswich are where artist tend to gather, and are not wheelie friendly and will never be due to buildings being heritage listing. However if I want to build my profile as an artists and share trade secrets then that's what it takes!
One day my support workers will workout I truly live outside the square!  And that's why Australia needed the ndis - cause nobody lives in a square anyway!

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