ndis for me this week!

The Good, The Bad and The Ugly

It's been a while since I shared how I'm progressing under the ndis with my own goals.  The National Disability Insurance Scheme provides support to individuals and families to achieve their elected goals.  In essence the ndis should empower participates to make their own choices around how they want their lives to look like, the types of supports the access and who they want to support them.

Just a bit of background for those who have not visited my blog before.  I have been self-managing my ndis plan for about 17 months and have successfully moved to self-directing my supports. This means I directly engage my own support workers,  It has been my experience that traditional support providers have been relucant to make any changes as a result of the introduction of the ndis. When I started my journey I was excited to think about 'one on one supports' that could be more flexible. For me initially that meant moving from 4 providers to 1 provider for my direct supports.  I use other providers for things like assisted technology, equipment & repairs and physiotherapy. 

I am a visual artist who is very active in my local art community and very vocal on my views around social inclusion.  I have worked with the community to build a more inclusive art community.  So as you can imagine my ndis goals are around 'art'. However I also have goals around health and well being, mobility and independence. 

Creating an accessible garden and planting plants I can eat has been one of the projects my support workers have assisted me with.  As I have multiple disabilities and health conditions, my lifestyle choices are around being active and eating well.

As I am highly autonomous the best type of support that suits me is a support team than works individually with me.  I also like a team that is supportive of each other and who together work towards achieving my ndis goals. I am very fortunate that this is a strength of my current team, it really helps that we're all on the same page. As it hasn't always been the case.  Admittedly as a team we've been through our ups and downs and we've tried to introduce workers that didn't work in my team.  However we are learning and growing and the process of introducing new workers is getting easier and more efficient. 

Readers of my blog will know I put a high importance on having fun as a team.  I have tried a number of different ways to find support workers that fit well.  Not all people are suited to working well together and that's something to be mindful when looking for workers or even group supports.  For me its important that my workers enjoy art and have similar values. 

More and more I am using 'supports' through online platforms.  Under the ndis supports as we have traditionally known them have grown to include support coordinators, plan managers, therapists and equipment.  The platforms I use allow me to decide who supports me to do what.  The trouble is I don't break my support down by activities, I expect the worker who is assisting me in the community, will also assist me to get ready.  That is not something every worker wants to do or is suited to doing. When I think about tips for finding the right worker the best I can think of is engaged people who have the traits you most value in family members and friends.   

Its interesting to find myself sitting on the other side of the fence.  Being a support worker is not something I ever considered before, however this week I became a support worker through Hire Up.  Hire Up thinks very differently about what is support and how support is provided.  Essentially the Hire Up platform links workers with similar interest.  So naturally I am looking to providing art and craft related supports.  I am also keen to support in the newer areas such as coordination of supports and forming a team they can self-direct,  The challenge is how do I share skills and knowledge without putting my own values across.  I'll let you know how I go on that one, because I realized how scuttle it can be.  I know what its like to have a constant change in team and people coming in with their own values.  Its easier to lose yourself and do it Jane's way when Jane is in the house, even if that's the only day of the week you wear matching socks.  Most days I don't even wear socks.

So that's the good side of ndis, where participants have more choices about their lives, who is in their lives and how they want to be supported.  On the flip side disability support providers are slow to introduce change and those who are able to articulate our needs are caught in the middle.  Somewhere in my ndis week I will have an interaction with a provider, even if that's just to order a new tyre for my wheelchair, or to ask my plan manager to pay an invoice, despite ndis being founded on choice, others seem to know better.  Who changes a tyre is not important to me, but who comes in my house is!

I made a comment to my phsyio this week, I think I should use more physio when I am struggling and less when I am doing well. 

She replied, 'that is your choice and that is how the ndis should work.  You know when you need to check in with me.

Unfortunately right now that's more than normal, Using my muscles differently means I am more prone to strains. So I need to ease off my fitness program and easing off is something that doesn't come naturally to me. 

The ugly is where choices are taken from me and I bear the consequences of incorrect decisions.  My readers with know that most likely relates to my new chair.  I am seven months into a new plan and I can not get a hold of anyone who can tell me where things are at or if my application has been reviewed.  I do not know who has the latest information and can not get hold of the person who did the application. So do I start again and where.  

Finding where you sit in the red tape and why is like having teeth pulled out.  If only I could buy a new wheelchair at Kmart. Well Kmart doesn't sell wheelchairs so my goal for the week is to find someone at the ndia who can let me know where my application review is at and to pin down the therapist who did the assessment. 

I know how hard it is to choose supports you've never had before.  Providers are happy to provide glossy brochures and website, but not with coming about whether they can meet your support needs. Participants need to be very honest with sharing information on quality of service.  This is the only reliable source of information we have in our decision making process.

Meanwhile I will let you know if I can track down the person who can enlighten me about my new chair.