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. 

Event Announcement

Transformations

Greaser Art Gallery

Sunday 24th February 2019

From 5 pm

About the Exhibition

Transformation traces the journey from my visual diary to completed works of art.

The two rooms contrast the stark images of black and white and an explosion of colour, by nature, I love working with bold colours, I have enjoyed working with grey scales to produce this body of work.

This collection includes work across different mediums to produce artworks to hang in homes and cafes. The exhibition is a collection of watercolour, acrylics, graphite, mixed media and printmaking. I have used four subject matters in these works; flowers, cats, faces, and spider webs simply because that is what I enjoy drawing.

These artworks are predominately work that are or will be transformed into pop-art.

I am proud to present this exhibition as my first solo exhibition in Brisbane which I trust you will enjoy!

I would like to thank Greaser Gallery for the opportunity to introduce my work to you.  If you have enjoyed my work, I will be exhibiting in Aspire’ group exhibitions through out 2019.

Progressing Inclusion

Working inside 

From the outside

Glen Smith on behalf of Arts Connect (Ipswich) accepted the 2019 Event of the Year - Australia Day Award for 'Having Your Voice'. Arts Connect hosted an collaborative art exhibition which all arts were the work of artists living with disabilities.  This exhibition was an initiative of Glen Smith endorsed by the members of Arts Connect.  As far as I aware this is the first of its kind in the South-East Queensland region to be organised by an organisation that was not funded by the disability sector. 

The opening of the exhibition was attending by over 300 people from all walks of life; as the disability services left the comfort zone and walked into the artwork to celebrate the talents of artists that just happen to have disability. Disability itself was absent from the walls of the exhibition and the walls spoke of ability - that voice that was loud and clear on the night. 

The significance of this win is not lost on me. I have been an advocate for artists living with disabilities for many years. The event was not about disability it was about art and the artists that created it. Previous exhibitions by artists with disabilities have focused on promoting service providers, rather than the artists themselves.

The goals of the Arts Connect team was to discover new talent; and to give artists with a disability a voice not only in the art community but the Ipswich Community as a whole. 

The event definitely achieved that. Whether it was curiosity, to support family members and friends, fellow artists or simply as a art lover people came together to celebrate and it was one of the best attended Art Exhibition Openings in Ipswich in 2018.  For me it was a powerful demonstration of inclusion at the invitation of representatives of the Ipswich community. 

The NDIS is designed to build the social and economic participation of people living with disabilities. Having Your Voice did that without the assistance of those who are paid to facilitate inclusion.  Under the leadership of Glen Smith. Arts Connect is one of the local community groups where artists with disabilities work alongside community members to achieve both individual and collaborative success.  If inclusion is about being equal, then Arts Connect in Ipswich is achieving it and living proof that it is possible. 

There are several members of Arts Connect that work as independent Artists in Ipswich. So it was pleasing to see an event that was deliberately socially inclusive win the 2019 Australia Day Award.  This pictures' the Australia that I and other people with these abilities want to engage in.  Inclusion from the inside out has not worked, only the appearance of the walls has changed.  The primary concern of disability providers is to ensure their own survival. 

I think the best way to achieve inclusion is to invite it.  Inclusion and inclusive practices are not achieved by programs.  These are achieved by changing our patterns of thinking.  Well done on Ipswich Arts Connect for leading the way.

When asked this week why I don't choose to work alongside disability providers, my thinking is simple. Working with closed minded people is not going to bring social change. Working on educating people with influence is changing the Ipswich community. There are no short cuts to any form of social change. Effective change occurs one person at a time, until a movement is formed. History provides many examples of social change the catalyst effect.

Thus I made a clear decision to lead by example and work in the mainstream arts community. I am excited to work with artists with disability but not from inside the disability sector.  I want to work from a platform of equal footing.  I am not an equal in the disability sector, I am just someone who needs help or fixing. 

Having Your Voice was a great step in the right direction, congratulations to Glen Smith and the Arts Connect Team.

NDIS around the traps

Finding Your Way

Those who work in the National Disability Insurance Office will tell you the ndis is about participants making choices around their own supports, but what does this really mean? As you plan your ndis journey you will enter via different gates, undergo meeting different criteria until you sit face to face or on the other end  of a telephone line and the planner asks 'What are you goals?'

'Umm . . . I am here to talk about my support needs (or child's), please explain?

If you have been planning to transition to the ndis you will know your ndis plan and what it looks like is determined by your goals and how you want to achieve them. In other words what  do you want your day to day life to look like; what activities do you want to undertake and what assistance will you need. When we look at activities under the ndis we're not looking at physio from service BBB or one on one support for in-home care with services X and Y.

The types of supports you can choose your service providers for is now dependent on an outcome of your choices. 

I don't know maybe go camping with my scouts group?  But I need my support worker Jane to take me to do my shopping, make sure that goes in my plan.

Your ndis plan is much boarder than that, who supports you to do a particular activity - like getting ready for school is now your choice. You can continue to use service BBB for all your support needs or use a number of providers.  What your ndis plan determines is:

• Types of support you can access e.g. centre-based care and mobility equipment.
• A dollar amount you can spend on each type or types of support.  i.e. Your plan budget.  e.g $5 000 for Improved daily Living,  $22 000 for assisted technology, $60,000 for 'core supports, assisted daily living, centre and social activities, respite care and one to one supports.
• How your plan is managed - ndia; someone else or yourself. 

These are determine by your ndis goals, how you want to participate in the community and what support you need; and lastly how you make that all happen.  Somehow the ndis comes up with a bunch of numbers as above.

Goals or the things you want to do can involve: sport, arts and craft, school, entertainment, building social or life skills, education and training, where you live, music, learning to use public transport, training and work, community groups, and making friendships. So your ndis pathway goes from making very board choices, like social participation in the community through establishing friendship.  You want to do that through accessing a service provider that offers community access; centre based activities; and social group based activities.

Once this goal is established and you tell your planner how you need help, then you can choose the service you want to use.  For many participants, especially those who have never access services before this is where the confusion starts and the participants aren't the only ones confused. Those who will assist them like ndis staff, support coordination services, CEO's of support services and those at customer service level are also confused.

I have been participating in the ndis for the last 18 months, and was pretty confident when I headed off to my planning meeting and it ran pretty much the way I expected.  When I received my plan basically the only thing I understood was my goals.  My LAC hand me a price guide, point out the supports I could purchase and said go to services and make a service agreement. 

I had no idea what 30 hours a week one on one support cost.  I didn't know if my budget was less than that or more.  

Will $ 7000 buy you a new chair my LAC asked,  

I don't know . . . I guess, I replied  . . . 

Well, let's just say I wasn't in the ball park and for that budget item I could ask for more.  And I'm still waiting on an answer. 

In terms of my new chair my biggest regret is who I chose to deliver my therapy support.  Well in looking for this type of service I had no idea where to look.  I knew I wanted week physio, hydro therapy and needed an OT to prescribe a wheelchair.  Someone else was looking at a service and another colleague use the same provider for his chair and it worked out well for him. 

However, I am still waiting.  So I want to be upfront what has worked for me, might not work for you.  I made the same choice as my friend and asked for near identical chairs through the same physio and he has his about 12 months ago and I am still waiting. 

Go Figure That One Out!

To work with any ndis provider you will need to sign a service agreement. This is a document much like a contract of a builder for you new house. 

• It sets out the service(s) you are purchasing e.g. associated technology assessment, prescription and assessment of purchase of a power chair. 
• The providers responsibilities
• Your responsibilities
• If its a service it will have an agreed number of hours and  quote for those hours.

As part of any service agreement you agree to make a service booking through the ndis portral and that amount of money can only be spent on that item number.  Who physically does this depends on who is managing you plan. 

No where in the service agreement I have do they need to state how many staff they have; waiting times or the capacity to provide the service and yet I need to ensure I can pay. If I known that one therapist covered the whole of SouthEast Queensland and there would be arguing over the chairs function and cost, I would of chosen a service who had more staff. 

Today was the fourth service agreement I have signed with that provider.  I had to sign to be able to access any information I need regarding the application under review by the ndia.  If I didn't I just sit tight.  

In the mainstream I book an appointment say podiatrist and pay for my visit.  I can call any time if I need to ask a quick question. I do not know why I can not do that if I have no agreed service agreement. 

I am self-managing my ndis plan which gives me the option of seeing a private ot to prescribe equipment.  There is no service agreements requirement.  The ndis does not require service agreements, these are an organisational requirement to secure payments. 

  

ndis under fire

Despite the tears of frustration and never quite knowing who can answer my questions, the NDIS has brought significant, positive changes to my life. I know for many other individuals and families this is not the case. This is why in the 2019 Federal election we need to highlight where the scheme is not working and argue for secured funding.  #fund it and fix it.

Right now, like every major expense in the federal budget and when it comes time to set the 2019 budget, regardless of who is in power - the funding for the broken NDIS system will be argued over.  People with disabilities and family members are no better off than previously - in terms of secured funding for their support needs. The NDIS promised to be a better way to provide disability assistance in Australia. Families and individuals are tired of the constant threat to funding for their everyday support needs.

The first thing we need from the Australian Government is a commitment to fully fund the NDIS into the future; and secondly give a commitment to fix the growing problems - by returning to the original key agenda reforms.  This includes delivering an insurance type scheme for every Australian, in the event of disability occurring.  The productivity report on what has become the National Disability Insurance Scheme or NDIS for short, suggested that over time, the scheme would pay for itself and be sustainable. On this agenda of the reform the report card is an astounding "F".

We are still arguing over its affordability; we have no secure future funding and we have budget blow-outs. All due to yet another faulty system in delivering disability support with everyday living tasks, - such as transport, support at school, uni or work; assistance with personal care, getting out of bed and with meals.

  

Key reforms in order for the NDIS to pay for itself - were based on the expected increased participation rates of individuals and families in their local economy and creating new jobs in the disability sector.  The report of the first part of this reform is a "F".  

Services continue to focus on meeting needs and filling gaps.  No one is really looking beyond 2019 because we're too focused on numbers.  Numbers of people entering the scheme; numbers of people employed, and overall budget blow-outs. 

Right now, across Australia, every disability service provider is crunching the numbers to figure out how to make their business viable under the NDIS. Because the system does not support the true costs of service delivery.  If this is our focus we can not deliver a system based on individual choice - NDIS has put services into survival mode.

If our focus was on individual goals and assisting them to become more independent and finding opportunities to participate, rather than meeting basic needs, then, we could refocus on the future - a system that promised a better way. 

When people such as myself participate in the community, earn money, make purchases, go out to lunch, enjoy community events the GST on the expenditure goes back to the governments. This was all factored into the original design of the NDIS.  Instead, we continue to 'care' for participants and not address their access needs. Nor has anything been done in local communities, where the NDIS has been introduced, to assist them to include people with disabilities.

If the public continues to see people with disabilities as needing 'care', why would they be exploring ways to make communities more inclusive?  Failure to find pathways for people to access the community in meaningful and productive ways was another nail in the NDIS coffin. 

We know the NDIS and its pathways can work. I like to count myself as a NDIS success story - here's my report card.

• Goal 1 - to extend my visual art practice and host a solo art exhibition outside the Ipswich area.  Achieved to date: business registration; partnerships with other local business; participation in art competition with success.  Art exhibition happening in Brisbane this March. 
• Goal 2 - improve mobility and independence through physio and appropriate mobility equipment. Achieved to date: still using same chair as I was using at the commencement of NDIS June 26, 2017.  Through accessing physio I am walking more, more able to access the community in my manual chair, have more energy to access the community for long periods.  i.e exhibit my work in  more places - supporting more community groups.
• Goal 3 - to build my personal support team, build self-directing skills and increase responsibilities to manage my support team.  Achieved to date: currently engaged 5 support workers to support me in the home; to access the community and run my small business.  
• Additional participation is employment as a disability support worker to assist other participants to achieve their NDIS goals in self-directing.

When we focus on the goals, participants are empowered to work towards things that are meaningful to them.  Participation in the planning process; empowerment to chose how to be supported; enjoying activities the participant chooses, should see more people with disabilities participate in the wider community. 

Key to this type of participation is a move away from a medical model of disability to a system where an individual's family are assisted and empowered to direct their own supports.  We need to focus more on the abilities and contribution people can make and less on what they are unable to do.  Sure, there is a very small percentage of people with disabilities who need 24/7 'care', but in the main stream - the NDIS is about how to address the access needs of participants to enable them to achieve their goals. 

Only when participants and their goals return to being the focus of the NDIS, service provider and support staff, will the ndis no longer be at risk of failure. To do that, the Federal government needs to fully fund and implement the correct structure to support the scheme.

Of note: the only goal I have not made any progress on in 12 months is not in my hands.  A new chair to increase my Independence, ability to work as an artist in the community, and ensure my safety is still being argued in terms of dollars vs results -  a perfect illustration of where the NDIS has gone wrong.