Reaching my ndis goals

Opening Night at Greaser Art Gallery

My name is Deb Chilton and I am a published author and poet and visual artist. On Sunday the 24th February I hosted my first Brisbane solo art exhibition.

With Pat Swell, the CEO of Access Arts

Every participants plan under the ndis is based on their personal or their family's goals.  Funding should not be about a person's disability nor directly related to their disability. Rather it is a plan to enable an individual or family to develop the life they want to live. So the participants goals should reflect, where they want to live and whom they want to live with, in most cases that will be the participants family, however there are some individuals who choose to live on their own or with friends. 

My home doubles as my art studio

My ndis goals are around extending my visual arts practise and building my audience. I am also invested in community inclusion and building a diverse arts community in Ipswich.  I achieve this through working with the local art community and some of my artwork explores my own thoughts on what that community should look like.

I also have goals around being independent and remaining safe and confident in the lifestyle I live.  Choice and choosing how you as a participant want to be supported is a key reform in the ndis.  My support needs are unique to my disabilities and I only require individual one on one support, some equipment and supports around enhancing my daily living to participate in the community. 

One of my physio hit outs

For me I achieve this through a range of therapies to keep me fit and active. Prior to the ndis I found being supported by traditional support services limiting and I wasn't able to utilise my support hours in the way I wanted. This has been the most significant change for me under the ndis and I now direct my own support team.  For me this means sourcing the people who I feel are best able to support me, choosing how my staff will be engaged,  organising my own roster.

With my support team meeting guess at my art exhibition

The ndis allows family and participants to choose how and who administrates their ndis package on their behalf. As I am self-employed and run a small business I was able to choose to partly self-manage my own plan and funding.  I have my key support worker assist me in this role.  My speech is a major communication barrier so my key worker makes most of my phone calls either with me or on my behalf.

The ndis should provide all participants and their families with more choices and flexibility, however my experience is you need to voice what you want constantly and sadly many traditional providers just want to work with every participant in the same way. This is not how the ndis was designed to function and you shouldn't be bullied into doing things the way services want. However my experience is it's a lot less energy to just go with the flow and my ideals are wavering. 

Engaging my own support workers, though platforms like Hire Up and individual contracts has given me the flexibility I needed to take my art practise to the next level. Most services operate during the week, however the majority of art activities I engage in are after hours. Transport has always been and still is a major access issue for myself and others with disabilities. With limited means of transport and the costs, people with disabilities still have limits placed on the activities they choose,  I am very blessed to have support staff who are flexible to make my work schedules work.

Spider Web Block Print

My major ndis goal to have my first solo exhibition in Brisbane was only possible because I stepped away from the traditional support services and the generosity of support staff who were willing to work outside the box. 

I am passionate about making this a reality for others in the years ahead.  The ndis may be new but there are many things about the ndis that need to be fixed and better funded.  I hope this post gives you and your family the courage to build the life you want to live.

ndis Living Better?

I think its fair to say the ndis has seen all of us face challenges. Whether your a parent, a participant, a support worker, a disability support provider, ndis employee or a member of the general public. The creation of the ndis was designed to create a better way of living for participants and their families. However there are still many challenges to overcome in accessing this new system; improving access for people with disabilities, promoting better inclusion, community awareness and achieving better outcomes in the lives of those living with disabilities. 

From the out set the ndis was to be a scheme that would benefit all Australians, by moving to a society and therefore a community that was inclusive of people with disabilities and their families.  Ideally the ndis should provide participants with the same opportunities as other members of our community.  Clearly, we're not there yet. When I was preparing for the introduction of the ndis and sharing my insight, I often said that the ndis was the prefect opportunity to try new things, I still believe this to be the case.

This week the ndis allowed me to try something new, through my enhanced daily living package.  This part of my plan is about living my best life.  For me I do not want to be sitting on a coach or moving into a nursing home at 60. I am still hoping some of my best days are ahead of me.  If you or a family member are a participant in the ndis then this should be a goal for your life too.

After a rough end to last week I have come out punching.  My physio is always looking for new ways to challenge me and keep me entertained. My physio got me to put on my boxing gloves. At some level I think every participant should be challenged. So lets get fair dinkum here, most Aussies like to take the easy way out - 'It's too hard.' and some days that is true for me too. 

The ndis plan is powered by the participants goals or in some cases the families goals.  Ok not every participant is going to choose to see a physio and not every participant needs that type of support.  The ndis is about being supported your way to do the activities and things you choose.  I have no intention on taking up bird watching so I am not expecting many participants to join me in the ring, 

For a small number of participants the plan is about quality of life and how to make life better for the family.  In these cases we're looking at respite care or day activities so other family members can resume their lives and even look for work.  In the main the ndis was created to increase the ability of participants to join in the activities that their community has to offer.  This includes things such as education, employment, festivals, sports and arts n craft.  

For many years one of my support goals was to have meaningful interaction in the community.  My current partnership with Angie the owner of The Retro Diner in Brisbane St, Ipswich is the perfect example of what I mean by meaningful interaction.  Not only do I really enjoy hanging out at The Retro Diner, the owner has given me the opportunity to have my art on public display.  She believes my 'pop art' sits well on the walls and I sell my range of giftware at The Diner as well.

I am not going out into the community, simply to 'get out of the house'.  I have a purpose and a reason to get out of bed in the morning.  It was hoped that the ndis would provide many opportunities for individuals to do this.  For ndis to succeed we all need to change the way we see individuals with disabilities.  We now need to view them as co-contributors in the community.

Most people with disabilities have a positive outlook on life and wear a smile.  I don't know about you but I find a smile contagious to be around.  The joy that these people can bring to a room or restaurant can lift the atmosphere.  Sadly many families living with disabilities don't feel welcomed in cafes and restaurant's, because others are uncomfortable with 'behaviours' or eateries are not physically accessibly.  The role of the ndis is not just to assist individuals to be involved in community life, but also assist the community to embrace people with disabilities. Assisting in building inclusive communities is one of the driving forces behind my art practise. 

Art speaks all languages and brings together people from all areas of life.  'Having You Voice'; the 2018 Australia Day Award for Ipswich Event of the year, achieved this.  Each of the artworks was produced by individuals and groups with disabilities.  The event was attended by politicians, community promoters, those who worked in the disability sector, those who worked in the art sector, artists and the artists who created this incredible body of work.  One of the art directors, from the main gallery remarked, 'I don't get this many people to attend my openings in the main gallery'.

  

This is a testimony to the tireless work of members of Ipswich Arts Connect, a group that embraces everyone and promotes the work of all members.  There are a number of artists living with disabilities who 'belong' to arts connect and participate in many group exhibitions.  This is what social inclusion looks like, 'belong' in every sense of the word.  Learning, working, producing and promoting visual arts (creating and performing) together. 

When we think about what a better life for people with disabilities might look like 'Arts Connect Inc, Ipswich'.  To achieve what Arts Connect has in Ipswich and embrace the ndis we need to challenge our own perceptions and beliefs that restrict the growth and participation of people living with disabilities.  These individuals are not 'DISABLED'.  Many are very talented and thinkers who can assist in the ndis transition if we let go of the medical model of disabilities.  The medical model implies all people with disabilities need care and need to be under the watch of a 'responsible' person. 

Many people who come through my front door to offer support are shocked to find I do not have a carer or have 24 hour support. Some believe my 'working life' exists in my imagination and humour me. The ndis has allowed me to take control and engage support workers who work 'in the background' to enable me to achieve my ndis goals. This month that goal is to have an exhibition in Brisbane.  18 months of slogging away, in the same way all members of Arts Connect my art is almost ready to hang on the wall of Greaser Art Gallery here's the invite. . . 

Moving forward I hope to witness more families and participants setting their goals and being empowered to take a more active role in deciding how they want to be supported; what services they access; choosing support staff that share their interests and support them to achieve their own goals.  I would love to see more participants being able to choose when they have their individual supports most art exhibitions occur after 6 pm.  There was a time in my life I wasn't able to access support on a Sunday.  Before the ndis my Transformations exhibition would not be possible. 

Even now some workers on the Hire Up platform find it difficult that I am inflexible at what time I arrive at an art group or even church. I struggle to explain to close minded people why just like my peers I want to be on time to events.  Workers telling me the times they will work is a thing of the past.  If they can't work the hours I need, then they are not able to do that particular shift.  Just as I struggle with workers inflexibility I too struggle with  my determination to self-direct. 

I hope we will overcome the current challenges the ndis presents and all those living with disabilities can embrace a better way of living. 

Road blocks under the ndis

Having YOUR Voice 

2019 Australia Day Awards (Ipswich)

Event of the Year

Under the National Disability Insurance Scheme participants and their families should be in the drivers seat, in terms of directing how they want to be supported.  The NDIS journey is different for everyone and everyone to some degree is encountering road blocks and challenges.  My own journey has been no different and in one way you would expect this from a system that is untried. 

Some days its hard to remember that the scheme is still developing, when your watching your child or parent struggle or you're sitting in a wheelchair that needs replacing or your trying to find the right service provider; or only one of your three children with ASD is funded by the ndis.  Life with disability is constantly challenging and those who live with disability deal with access issues everyday.  

Inclusion Is but A Dream

Driving with one footplate

Every day is a reminder society was not designed to accommodate us.  Sadly, there are some members of the public that remind us of this, you should be locked in an institution. Who says that to people in 2019?  Many days social inclusion seems but a dream. 

With that as a back drop, we have transitioned from one model of disability care that was critically funded to a new system that was designed to empower people living with disabilities. Regular readers will know things have not gone according to plan.  Access to reliable information has been difficult and even the original ndis website was inaccessible.  A new website design was recently launch, so if you haven't done so you should check it out. 

I have highlighted many times my travel along the ndis road and being empowered to make your own choices is dependent on:

1. Access to information and;
2. Communication.

Regardless of how your plan is being managed you have the right to choose the service providers you access. This is not the decision of a host provider or plan manager.  These support services may offer suggestions and information on services provided in your area (information) as can your LAC (local area coordinator).  You may also find a google search helpful.  However my own journey has shown this is only part of the information you need to make choices around your supports. 

When you discuss your plan with existing support services, support coordinators or new support services you're considering, the information they're going to provide is:

• This is who we are
• This is what we offer
• These are our fees and charges (it is now law these are provided to you before signing an agreement)
• A service agreement that states:

          a) The period of agreement

          b) Descriptor of the service(s) to be accessed

          c) Fees and charges

          d) Agreed no. hours for each service

          e) Full quote for those hours (A total)

          f) Any out of pocket expenses

          g) The services responsibilities

          h) Your responsibilities

** A footnote: Participants should receive a copy of all invoices.  I know many I do not see. 

Even if you reach this stage of information that is provided you do not need to go ahead or you can ask for changes.  I do it often.  If you are unsure about the service agreement you can take or send a copy to your LAC to have it explained to you.  Not to be provided with a copy is illegal, whether a service thinks you can understand it or not. 

Buyer beware - you still do not have the whole picture.  The service agreement does not tell you if the service will support your goals; how many staff they have; if your goals and needs can be meet; and thus if this is the right service for you and your family.  So you need to ask:

• How the service will support your ndis goals?
• Do they offer any flexibility in service provision to better suit your ndis goals?
• Staff availability?
• Do they currently have trouble filling rosters and if so what is their bank up plan, will they use agency staff and how might this impact your service(s)

These are some of the many questions I wished I asked when considering service providers and signing service agreements.  I found many are happy to tell you what they think you want to know.

So you still do not have all the information you may need to make your informed choice.

• Ask other participants
• Join facebook forums
• Google for reviews.

Last week I found myself sitting in my six year old wheelchair whose footplate constantly needing replacing with a NO ENTRY sign in front of me.  Simply because of a lack of communication.  The ndia had knock back my new chair application in June 2018. I was told that all that was needed was more information - not it was a flat 'no'. 

After further questioning I found the ndia needed two new quotes and more information. Believing that to be the case I attempted to contact my physio, relaying the message that the ndia was trying to make contacted with her.  She assured me she had obtained a new quote, so I waited,

I heard nothing, even when I lodged an incident report involving the urgent repair to my chair for safety reasons.  Whoever uploaded the document should of seen my application was declined - nothing.

Finding last week I woke up Monday morning determine to find out where my review process was at, hoping it was just not sitting idle in the system somewhere.  I also contacted my LAC, who sent out emails in search for answer.  I had given the ndia until Thursday before contacting my MP.

Friday I finally got a phone call.  The ndia would never consider paying that much for a wheelchair.  Why I had to wait 7 months to be told that and my physio never passed that information on, I will never understand.

So I said to the man on the other end of the phone, I have nothing to lose by changing providers?

He believed that to be the case. I was able to give him the details of my new provider and consent to forward my file, previous application and request for additional information. 

This action took 30 minutes on the phone and now sits in my portal ready to action tomorrow.  I have already requested the first available appointment with my OT to review my assessment for the chair and discuss new information required.  Which my current physio has offered to assist with.

I then emailed my LAC with a update and request for budget review so I could complete the requirements.  She was horrified and asked I send her copies of everything when I had it and she would do everything to fast track the application.  She assumes a provider will let me see a copy, yet alone have a copy.

Service providers are still not being transparent with the information or billing the provide to the ndis.  This is about me, this affects my daily living and the choices I make.  Down to the art galleries and studio spaces I use for my art practice, I have a right to be informed every time my application progresses in the cue.  I should not have to threaten to go to a MP before receiving information about me.  This is not good enough!

Application for assisted technology for this price is the only part of my ndis plan I have no say in as I self-manage my plan.  Thus it is not my responsibility to chase things up.  I am paying physios and OTs to do that on my behalf - clearly the chain of communication in this area of my plan have stopped.

So if you've not heard anything for a while ASK! And ask until you get answers!

Ultimately I believe this road block occurred due to lack of information provided when I signed my service agreement.  Poor communication between me and the therapist prescribing the wheelchair and then no communication unless it was at my request.

The two keys to empower participants to make informed decisions about their choice for support. Had I known the service provider only had one physio for both the aged care clients and younger people with disabilities in Ipswich, Locker Valley, Toowoomba and out to Boonah,  I might of been less reluctant to sign the service agreement.

I soon realised the physio often she came or called after hours and often wrote reports in her own time because service agreements were out of date.  This service failed both me and their staff.

Services are happy to blame the ndis and lack of funding for poor service provision, however most of the road blocks I've had to unlock are due to poor information and lack of communication by providers.  The National Disability Insurance Agency can't be held responsible for that.

If you remember the backdrop I provided at the start of my post.  Participants and families are now adding this stress to the stress of living in a society designed to accommodate them.  Many support workers question why I seemed stress when my needs are being met.

Well today the answer is: somewhere between working part-time, running a small business, preparing for a solo exhibition, addressing my medical needs (about 3 appointments a week) and self-managing my plan (oh plus the admin I do for Disability Community Awareness and my blog) I now need to find the time to fit in completing my wheelchair application. Really there are only 24 hours in a day.

So forgive me if there is a day or two I feel like its all too much.  To the state and federal governments I said, funding and fixing the ndis is a nation priority!