ndis its not always a hit to be a square!

After years of not fitting into any boxes and being squeezed in anyway so I could access some supports such as in-home supports and community access, I am now participating in the ndis and living what I consider to be my best life.  The ndis supports individuals and families living with disabilities that impact their daily living skills meaning, we need assistance with things such as personal care, feeding, meal prep, mobility, transport, house work and accessing the community. 

My name is Deb Chilton I was born with spastic quadriplegia, which basically means cp effects my entire body, but not my intellectual ability. I was one of the first students with disability to enter into the mainstream education system in 1976. After school I was the first known person with a disability to enrol at the D.D.I.A.E now known as the University of Southern Queensland. Prior to the 1970's it was assumed students with disabilities could not learn. The Queensland CPL assumed after school I would work in their shelter workshop and refused to believe my reported academic achievements. This was simply not possible and the academic literature supported that view. 

In 1991 I completed my Bachelor of Arts and continued to turn my back on being supported by the disability sector.  In my thesis I had researched the growth of Supported Employment, but personally did not see the need to access that service myself.  I was gun hoe on Changing the World through my faith in Jesus Christ.  As a Christian my church background and lack of Christian network made my transition to Crusader for Christ difficult.  I was still a misfit but passionate that Jesus was the key to transforming lives. 

However that track halted as I faced chronic health issues for the next two decades of my life.  For me once again I experience disability but remain determined to live a 'normal life' and established great networks in my local church, making various attempts to study and find my passion.  I now know I had chronic fatigue syndrome and a non cancerous brain tumor causing havoc, seizures, hallucination and panic attacks, but diagnoses and effective treatment waited until I was 48.  Through it all my faith in Christ kept the flame alive. 

Depression was a lonely time and many days the light seemed to blow out.  I still failed to tick boxes and drifted through life looking for my calling and purpose.  By this time I was living in my own home; writing for Creative Christian Enterprises and researching my Children's book.  I spent the next 5 years writing a book, being involved in the Ipswich Poetry Feast and sitting on various committees and boards of disability service providers, receiving 10 hours of support a fortnight.  Officially, I was not disabled enough to need assistance.  Service providers did what the could to beg and borrow funding to support me to live independently, but I experienced first hand a broken system of disability care and inappropriate care.  I needed to wait sometimes until 2 pm for a shower to start my day. This made life difficult to juggle. 

Until one day it was all too much and my immune system crashed and I spent three month clinging to life. Its was gaining access to the disability support services or die.  The doctors were blunt and held me captive until the department gave me the support I needed to stay alive.  This illustrates the critical shortage of funding for the disability sector in 2012.  This is why Australia needed National Disability Insurance Scheme, without people like me had no control to direct their own future. 

In 2015 the federal government and states finally signed up to fund the ndis and the roll out of the ndis will be completed by the end of next year, for many its too late but for others it keeps the light burning.  The days of ticking the boxes to receive any type of support are over. 

My story illustrates why Australians needed a sweeping reform for the disability sector. Leading into the birth of the ndis Australians treatment of people with disabilities had been raised at the UN and Australia was pushed to address the rights of people with disabilities.  This empowered us together our collective voices to march on Canberra and demand to have a voice.  The disability care system had led to abuse and neglect of 100 000 people living with disabilities, some of these were unable to speak for themselves; to be heard as individuals we needed collectively to say to the Australian people Everybody Counts and Australians with disabilities should be given a say in their future.

Speaking at the opening of the Ipswich Area ndis Office and assisting in shaping the ndis is one of the things I am most proud of in my life's achievements. The fight for equality is far from over, the ndis is riddle with teething problems and pathways remain blocked by access issues.  Future funding of the ndis is still needing to be secured to ensure the ndis is everything we fought for and every participant has choices around how they are supported and who supports them.  Many still do not exercise their rights to challenge the system the struggles to let go of controlling their lives and others still face abused because they remain dis empowered to speak.

The founding principles of the National Disability Insurance Scheme is the right to determine how you or the person you have guardianship for want your life to look like.  This includes basic choices about where to live; who you want to live with; what school your child will attend, what early intervention programs your child accesses; who your physio will be; what disability support services you will access; who you want in your home; the right to choose your support staff or the support activities you engage in. 

The journey for every participant and those who support them begins with planning and researching how to shape their lives under the ndis. This could include family members, support workers, workmates or the blokes from the pub.  The person with the disability can choose who they want to support them on their journey and some choose the postman because that's the person they trust to advocate on their behalf. However the legal guardian must sign off on the final plan before funding is released.  

Those under the Adult Guardian must have a representative involved in their planning meeting, but the ndia can manage the participants plan on their behalf.  Regardless we need to ensure these participants choose how they want the support structure to work.  Every ndis plan is built from a participants ndis goals. These are the things the participants wants to do or how they want their week to look like. For example they might want to play golf or look for unpaid work.  For every participant the goals will be different.  To ensure the plan is based on the participants choices its best the supporters who attend the planing meeting is not representing a disability support provider.   The may offer support coordination in the second phase of planning but where we can we want to ensure it is participants or guardians if the person is under 18 making their own choices.  

I have been participating in the ndis scheme for a year and a half now and one of the goals I have been working on is improving my independence. The ndis has set aside funds so I can access to improve my daily living function.  I can use this for occupational therapy assessments; physio or exploring assisted technology options.  Through accessing physio I am standing, talking and walking more.  An increase in strength has seen a decrease in seizures. It has given me back my life!

Today I launch my Retro Diner Range. My other ndis goals are around self-directing my own support team of workers; extending my art practice and having my first solo exhibition outside of Ipswich. 

Participants goals can be around home life or accommodation; schooling, education or training; work or volunteering; friendships and relationships, improving independence, something they love, learning new things or life skills; sports or recreation.  So very few participants are going to choose to become astronauts, but a few may want to become more independent and move out of home. In choosing goals you want to be realistic; not every two year old will learn to walk and not every participant will want to start a small business.  Whatever your ndis goal make them about you and not about your supports.  Once you have your ndis plan you can choose your service providers or talk to current providers about how to achieve your goals. 

The next stage in the planning is about the 'how' to achieve your goals, its still not about choosing your supports.  Rather how will you learn to paint with oil paints and how do you want to be supported? Are you learning for fun or do you want to sell your artwork? This could involve education or training; or you might want to do this with a support service you will access. Here you want to fill in the daily activities you will engage in.  So supports are no longer about your disabilities, but the things you enjoy doing.

For some participants and families there is one more choice to complete the planning meeting. Who do you want to manage you plan and funding? The ndia; someone else or do you want to do it yourself.  You need to discuss with your supporters; family and planner ways you can achieve this and what supports you will need. I am self managing and directly engage my own workers, but I access other things like assessments for equipment through service providers. 

The ndis is bringing new flexibility and options to the lives of participants, but its ok to leave things as they are too.  For some people change brings disruption to their lives.  The really neat thing about the ndis is you are never locked in and you can always change your mind.  I was sneaky and even wrote this into my first plan. I had a three year plan to gradually do more of administrating my plan myself and that is really working well for me and I am growing in confidence and independence and essentially that is what the ndis was designed to do. 

Participants who are more autonomous now have greater flexibility in the way their supports can be structured. Those who self-manage can even use non ndis providers and not be locked into service agreements. So years after wanting to find the right box and be square, boxes are finally irrelevant and this is the most freeing experience of my life,  but I still want to change the world!