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!

Teaming Up For Success

The Collective invite shoppers to visit the 'top end of town' this Sunday 25th November.  Four local business owners are joining forces to build their individual business.  By working together Angie, Deb, Dona and Eliza are able to market together and share their networks with each other. 

The Mad Hatter's High Tea Party

Sunday 25th November 2:30 pm to 4 pm.

The Retro Diner 

'Top of Town'

Brisbane St, Ipswich

Tickets $20 each

Bookings via The Retro Diner's Facebook Page

Owning a small business is tough, so the owner of The Retro Diner took the opportunity to allow me to hang my work on the walls of her coffee shop.  I was just exploring POP ART! That was popular in the 1960's through the encouragement of my mentor Irene at Aspire Gallery.  The series fitted in well on the Diner walls and they're not just for decoration, they are available for sale! 

The Mad Hatter's High Tea was the idea of Angie to bring a special experience that only the four of us could offer.  Angie has the venue, Dona has the tea, I have designed the diner's new signature range and Eliza has the artistic flare to bring it all together and have lots of fun while along the way.  Suddenly being in business alone as a women is not so scary. 

Angie is one of my biggest fans, business partner and friend, she has introduced me to Eliza and Dona to form a collective to build our businesses. Angie asked me to design the summer uniform for the diner staff and I am very proud of what I was able to deliver.  The design is now available to costumers on T-shirts, mugs, tea towels and aprons.  

Both Angie from The Retro Diner and Eliza form Limestone Emporium are happy to take your custom order to allow you to pick it up from a convenient location at the Top of Town.  Thank you ladies for inviting me to join the collective may we have lots of years of fun ahead of us! 

  

ndis and changing lives

My name is Deb Chilton and I've been blogging about my ndis journey since I began to think about what my life could look like under the ndis, can I tell you it is looking great and I'm standing tall. The National Disability Insurance Scheme or ndis is a national approach to supporting people with disabilities and family members to fully participant in community life, this includes schooling, education, employment, training and development, civic duties, sports and recreation; and arts and entertainment.  We are moving from a 'system of care' to a scheme that empowers people and families with disabilities to determine what they want their lives to look like.  There are 1.6 million people in Australia living with disabilities, the 460 000 Australian who directly benefit from support received through the ndis need assistance with daily living tasks.  This could include: everyday personal care; meals; housework; medications; transport; schooling; education; community life; money management; behavioural support; making friendships; and developing life skills.

So why is the ndis for every Australian? At the heart of the ndis is a universal need for belonging, It is time to acknowledge that people with disabilities and their family members belong! 

With belonging to a community comes 'rights and responsiblities'. Participants can not have one without the other; the right to determine 'how you want your life to look' and the types of supports you access comes with legal and moral obligations.  This challenges our traditional views that people with disabilities need caring for.  The truth is their are times in our lives that all Australians need care and we should not be seeing that as different or unusual.  In fact to acknowledge that is one step towards embracing inclusion and welcoming people with disabilities into our schools; places of education, training and development; the workforce, civic activities, decision making, arts and entertainment; and sports and recreation.  As Australians we all need some levels of protection too and to achieve that we have the rule of law.  State and federal laws govern every Australians life. So it is time to move together and empower people with disability to play apart in decision making especially when it comes to their own lives. So the question of whose lives are changing under the ndis should be 'everyones'.

More directly it is the lives of the 460 000 Australians living with disability.  The majority of disabilities are unseen and most people with disabilities need no assistance to live daily lives; those who do need various level of support. For someone who is unable to walk the only types of assistance they will require is a wheelchair, house and car modifications and maybe medical supplies. 

However their a those living in the community who struggle with things such as communication, sensory stimulation's, acting appropriatly, decision making and their are a small number of people who require assistance with every faucet of their lives, these are the participants that may require some type of traditional 'care and protection'.  However this traditional models need to change for all participants, if we are to ensure every Australian has the same rights to self-determine the types of supports they want to access.

In the main these individuals are under the Adult Guardian and these are the individuals whose plans will be directly managed by the ndia.  Under new federal laws any supports paid through the ndis must not place and individual at risk of harm (it is vital we don't let these protections rob participants of their right to choice in order to protect them).

The key to the success of the ndis is that ALL PEOPLE WITH DISABILITIES are participating in their local community at a level their individual impairment(s) allow, guided by the people in their lives who know them best, I count myself in this as I too ask for input from friends, colleagues and professionals as I manage my own supports.  

One of the original concepts of the ndis was it would pay for itself overtime, something even the federal government has lost sight of as the wheels appear to be falling off. The key to achieving this I believe is the word ' participation'.  Support under the ndis was not design to look after people in their own homes.  Rather 'supports' under the ndis should be maximizing participants level of independents in the community, for someone like me that's a personal assistant, that allows me to safely be out and about; for others its a piece of equipment; training and development; or individualized therapies.  

One of the more ambitious goals of the ndis was to see more people with disabilities participating in the workforce and earning a equal income.  For me personally this has been the case. I have always worked in some compasity after graduating from uni, but never in a paid role.  Not only is my small business growing I am about to be employed by Hirer-Up to work with individuals and families to achieve greater participation in the workforce, including business development skills. 

In growing my art practice, I now have a partnership with the 'Retro Diner'. My artwork decorates their walls, I have designed and hand printed a signature Retro Diner rememberalia  and staff uniforms will soon also bear my mark. 

You will find 'Deb's Corner' in Brisbane St in the Ipswich CBD.  My selected gift ware range is avoidable at Art Smith's in Arttime Supplies, Limestone Emporium and of course the Retro Diner.  My joining the Hirer Up platform is a chance to increase my engagement with participants who want to grow their compasity through accessing their ndis funds or set up and direct their own supports.  My main goal remains to exhibit and sell my artwork outside the Ipswich area. The reality of achieving this goal came a step closer this week with an acceptance of my art exhibition @ Geaser Gallery in early 2019.  Look out for more information on my Transformations exhibition in the new year. 

Increased employment opportunities for people with disabilities is one target area in the scheme, but the scheme was design to give social and economic support to local community, through creating new jobs and people with disabilities having more income to spend,  One of those new jobs is my consultant role at Hirer Up.  Hirer Up is a online platform to link participants to support workers who provide various type of one to one supports.  Such as inhome, personal care, community access, transport, training and education, mentoring and supports coorindations.  

ndis allows more Queenslanders to be supported to undertake their daily living task creating tens of thousands of new jobs.  I myself directly employ two staff and access another three staff through Hirer-UP. One of my team members works full time as my PA ensuring I am where I need to be on any given day, which on some days she is supporting me in my home studio.  Through using me ndis 'core' funding to self-direct my own supports, I am receiving many more business opportunities and now part-time work.  I will also be undertaking my first art residence in 2019 at Roderick Street Kindy.  I now need to print a work shirt to say my 2019 calender is full.

My ndis journey has change my life and will bring opportunities for me and my community in the years to come. 

   

ndis and new possibilities

The National Disability Insurance Scheme promised to deliver new opportunities to participants, including employment, more jobs in the disability sector and a participants focus support system. The ndis offered an opportunity to explore new ways to provide support to thousands of families living with disabilities. Prior to its roll out the 'support or care needs' of participants was determined by government departments and offer the assessment tools yielded no support or inappropriate supports.  The ndis recognizes that the bast people to shape a participants support system is the significant others in their lives; family members; unpaid carers; GP's; support workers and their natural supports network.  We are now moving away from a medical model of care, to a system that empowers families and individuals to be active in designing their own supports.

This involves an individual ndis plan for each participant, where they themselves determine what their daily lives will look like and for every participant that will be different.  ndis goals are the things participants want to do and the activities they choose to engage in. This may include things like school; sport; study; lifestyle; accommodation; work; community life; arts and craft; independent living skills or even politics.  The ndis encourages every opportunity to enjoy new experiences and try new things.  I know of providers in my local area have introduce many new opportunities to their programs and I encourage participants and their representatives to check them out. 

On a personal level the ndis has open many new opportunities and experiences. For the first time I am in the drivers seat of designing my own support network.  Under my ndis agreement I am self-managing my plan. This allows me to decide how I want to be supported. Do I want more direct support hours or do I want to invest in technology to improve my safety and independence? In my current support plan I am hoping for the latter.  In previous posts I have shared some of the payment structures issues.  Putting that aside the ndis has given me the opportunity to engage my own support workers and structure my team in the way that best meets my needs. 

Other opportunities I had under the ndis are to list my Small Business; extend my visual arts practice; exhibit my artwork in new places; and improve my independence through physio. I have tried a few times before to keep walking on my feet.  With regular physio visits and better treatment of my chronic health conditions, I am now successfully walking independently for short periods of time.  

The ndis has allowed me to set my own goals and determine how I wanted to achieve them.  For many years others determined how I would be supported and it wasn't always the appropriate. The ndis has given some participants the freedom to engage their own support staff. This is not a option for everyone nor is it a option everyone wants to undertake engaging their own staff.  However their are new services on the block that offer all participants the opportunity to engage support workers of their choosing. 

Online platforms such as Mable and Hire-up allow you to hire your own support team under the traditional banner of a support service. The are also disability support services that will assist you to self-direct your supports.  This is the type of new opportunities ndis hoped to deliver.  Traditional support services do not suit everyone and they can't offer the flexibility some who is studying, working full-time or running their own business needs.  Participants with fixed commitments or responsibilities for others can not rely on supports staff that are inconsistent or varied times of support.

Services such as hirer up recognize that supports work best when support workers and participants share a common interest. In my case that is arts and craft; gardening and fitness. So in self-directing I have sort staff with the same interest as me.  These online platforms allows works to communicate and meet-up before agreeing to work together.  Hirer-up also allows you to hire your own staff and have them register with them as the employee.  If you have your own team you can hide your profile and workers profiles from public view, so you can access their bookings; payments and invoices service. Participants also set up their own support plans for their workers to access on,  Hirer-up can be access by all participants regardless of how their plans are administrated.

I believe all providers can learn to create new opportunities for their participants using the traditional support service structure of governance.  We need to learn to give participants a chance to shine rather than over protecting them from the what ifs.' We can continue to offer duty of care and risk management through our policies and procedures.

Let's no let own fears deny others the opportunity to shine. Let's empower participants 'to have a go' because we never know just when we will discover a new shining star.  Let's give the key principles of the ndis a fair go!

ndis the challenge before us

The National Disability Insurance Scheme is a new era in the way people with disabilities are supported across Australia. The structure 'supports' for each individual focuses on their goals. 'Goals' determine the activities participants want to engage in and how they want their lives to look like.  While a small number of people with disability need care (usually referred to high needs - assisting with bathing, toileting, feeding, communication, medications, budgeting, behavioural and household management.) the majority of participants only need assistance with some areas of daily living such as housework, communication and medication.

By focusing on ability not disability, we are moving away from a system of 'care' to a system where families and individuals are fully engaged in the planning of their 'supports'.  Some individuals will be able to engage at higher levels than others; and some will need the support of family, (unpaid) carers and guardians.  Where a person is under the adult guardian then the ndia will most likely manage their plan.

Every plan starts with participants and their families choosing their ndis goals; In day to day language, this is 'the activities they want to engage in' The plan also decides who will be responsible for ensuring the participants plan is administrated correctly.  This will either be the person themselves, a third party or the ndia.  Regardless of how the plan is administrated the participants all have the same choices when it comes to their support structure; support providers; suppliers; therapists, programs, early intervention and support workers. 

Unless a person is living in full time supported accommodation government agencies (or providers) are no longer responsible for 'the care' of a participant. In many cases the terms 'care' and 'duty of care' are being confused.  While both terms have a legal responsibility attached to show 'due care' at all times and undertake risk management procedures, only those under taking a 'care/guardianship role' can make decisions on behalf of participants. 

All others providing supports or guidance to individuals with disabilities must show 'due care'. Let us explore one example of how service providers must show 'due care'.  As part of my ndis plan I access physiotherapy, recently I had a fall and injured my hand. Before continuing on with my exercise program my phyiso required medical clearance from my GP.  This required an x-ray.  Neither my GP or physio have made any decisions on my supports, they can only guide and support me to achieve my ndis goals. 

I may need further tests before together we come up with an action plan to achieve my goals.  Both have met their legal requirements under their respective duty of care. So those employed in the disability sector need to ensure their 'duty of care' policies are around risk management and not decision making.  This is a difficult transformation to make. 

In the main, front line workers are referred to as key workers; support workers; lifestyle support workers or personal care attendants.  The general community and some in the disability sector still refer to these employees' as 'carers'.  While some aspects of 'care' may be required by participants and families, such as personal care, financial or medications supervision.  These staff are still not 'carers' in the traditional sense of the word. 

The ndis nor refers to a participants 'support network' in terms of 'informal supports' and 'formal supports'; both types of supports have a role to play in enabling and empowering participants to achieve their goals.  Here we have another change in the front line workers role.  We have moved away from having a care giver role to one of enabling people with disabilities to do what they can.

For me through physio and medication I am now able to walk unaided again.  Previously support workers have encouraged me not to walk to prevent falls.  However in terms of osteoporosis we know weight bearing exercise is in my best interest. The ndis takes a more proactive approach to long term disability support. In the main the disability sector struggles with these concepts.  

My supports look very different to what they looked like pre-ndis. I now directly engage my support workers and self-mange my ndis plan through a plan manager.  The role of a plan manager is not to decide who supports me; what aids I will purchase from a given supplier, but pays my invoices on my behalf and assists with reporting to the ndia.  This is something most providers do not understand and filters down to services and suppliers who support me.

This relates back to how the ndis views 'supports' as 'informal supports' and formal supports.  "Informal supports" are usually provided by family members, guardians and friends.  These are natural supports we all have.  They may come through school friendships; fellow students; work collages; sporting or social groups or business relationships.  In the main our informal supports are unpaid. 

However a participant may have a member of their informal support group who has a legal care role in their life.  This is usually a parent or a sibling but not always. These care givers are either 'carers and/or legal guardians', who have legal responsibilities in decision making on behalf of the participants.  Not all participants will have carers or guardians as they move in to adulthood.  People with disabilities who do not require care or legal support are known as 'self-carers'.  This is another term the general community struggles with. 

Not only am I a self-career but I also run a small business and book keeping, paying invoices and wages is part of my work day. Thus the ndia decided I could self-manage my plan with minimal risk to my well-being and themselves.  This is the type of risk management ndis support providers still see as their role. 

Much of this 'risk management' is more about ensuring their own survival and economic security in a market driven environment, without clients or participants direct service providers have no income.  So many are still struggling to find that balance. Part of the answer was attaching quotes to service agreements. A service agreement spells out the rights and responsibilities of both parties.  The quote then forms part of ndis plan budget and a service booking is made ensuring the participant has the funding to pay for the services to be provided under that agreement.

When a service agreement is worth tens of thousand of dollars this is understandable. However where this involves a amount under $100 then neither the participant or provider/supplier want the effort of a service agreement,  but my wheelchair tires still need replacing. Like many people who self-manage a issue arises when a provider can not put the invoice through the ndia portal and the participant is reliant on a planner to pay.  I found out the hard way that a planner can withhold funds, even when there is over $100 000 sitting in my plan. 

These are the daily frustrations of those who self-manage. Providers want us to make payments under their terms and conditions. Their need to self-protect and protect participants leaves participants without equipment and supports or out of pocket.  

Where providers that managed risks they too experience delays in payment for services. It is hard to get your head around how in an electronic age of money transactions that a payment or an invoice can take months.  A more transparent way to undertake translations is needed.  The first time I know of a problem is when an unpaid invoice turns up in my inbox. 

We know good business relationships are built on open communication, in a market driven economy when communication brakes down customers take their business elsewhere. This is something the disability sector can learn from the business sector.  Everyone makes mistakes and their is nothing wrong with admitting to them. Its when you deliver excuses or try to cover up errors that business relationships breakdown. Where there are service agreements and penalties if participants op out, they feel trapped and controlled.

Under a system designed to focus on the participants anytime a provider or supplier puts their needs before providing due supports rists in a breakdown of ndis principles.  This is not the ndis fault but a sectors determination to keep control. The challenge to all of us is are we able to communicate openly and honesty to try each other to make transactions in a honest manner.  If we are not the system will again fail those it was designed to support.