This week after 5 years of doodling, skills learnt at art school - Brisbane Institute of Art, lots and lots of practice and business skill development, I registered by small business Doodles and Dribbles. Not exactly an overnight success, but rewarding all the same. My stock is now available at Arttime Supplies Ipswich and Limestone Emporium. The role of the National Disability Insurance Scheme is to increase the participation rates in the community for people with disabilities and family members. It is important to recognise a child born with disability or an acquired disability, has an impact on the whole family and can restrict their involvement in the life of a community.
In my last post I shared that the ndis intended to achieve this through assisting with the access needs of the individuals to ensure they can participate in the community. Individual needs and ndis plans are based on goals not the disability itself. The plan looks at 'how' the individual or family wants to engage in the community. This is why they are called participants.
Individuals and families are able to fully participate in the planning of their supports, the activities they engage in, the services they access and the staff they let into their lives. ndis should be empowering participants to be actively be involved in life. Goals might be around independence, learning new skills, home life, education, work, sport, the arts and entertainment. Most significantly for people with disabilities it will involve establishing a network and friendships to help them grow.
We all know the current system is flawed and many teething problems are occurring. There are people working hard to make these known to the government and lobbying for the scheme to be funded in full. I acknowledge many participants feel let down and discouraged. I also know those who are happiest with their plans are the participants and families who sort information on the ndis and put thought into how they wanted the ndis to look for themselves.
They didn't go to the ndis with a wish list, they went to them with a plan.
This is what I want to do
This is what life looks like now
These are the changes I am looking to make to achieve my goals, dreams and aspirations.
This how I need support to reach my goals.
The ndis planner has tools (or questions) to use to determine how you need support (in home support, supported activities, equipment and technology, and therapy). What that looks like will be determined by your plan budget, the support services you select and a professional assessment of needs. We know there are cases where the ndis is getting it wrong, where this is occurring you need to speak up. However the review process is long and getting longer.
Good planning relies on information and for many people with disability and families struggling with day to day life accessing the information needed is difficult, particularly when you have never been able to choose before and you do not know what services are out there.
A few tips:
Make the plan about the participant not the disability
Make the plan about the activities they want to do not what they can't do.
Make the plan based on activities not supports you want to access.
Make the plan about exploring possibilities not fitting in to what others want.
Know what life looks like now and the changes you think will improve your independence and make life enjoyable.
We're all mad around here!
My name is Deb and I just turned 50 and my life has never been better and I believe that is because I knew how I wanted my life to be once I was part of the ndis. I am a published author, poet, artist and disability advocate. Admittedly I had armed myself with as much knowledge of the ndis as possible, I worked hard on how to articulate my goals, I knew I needed to be clear on what my work and now business looked like (artists are known to be dreamers) and I believed life could be better. In short I was prepared for the introduction of the ndis.
I also worked in the disability and arts sector for 5 years and I had colleagues that were employed by the ndis. These people knew I was recognised as an artist and actually sold my work. Many others in the arts struggle to be taken seriously.
So some advice
Use photos and sell ndis your story
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If you can show your planner a book cover with your name on it, or a photo of you acting or photos of your art work hanging in the gallery with a red dot under it, then most likely this is proof you are doing what you say you are doing. However this is not enough you will need to explain how much time it takes to provide a stocklist with stock and what's involved. Recently I wrote a series on art and the ndis you might want to check out those posts.
My ndis Plan
So how does all this filter down to a ndis plan? What does a plan look like? How does that reflect in the supports and services I access?
While two of my ndis goals relate to art and the growth of my art practice. However there's more to life than work and in the main my ndis goals are about maintaining my high level of independence and being actively involved in the community and assisting the Ipswich arts community.
This year I have moved away from traditional support providers to engaging my own support workers and self-directing. Under the ndis there are many ways you can have your ndis funding managed. From my first plan I established I wanted to self-manage my ndis plan and gradually learn to do more of the administration myself. I elected to do this through a Plan Manager and earlier this year I recruited and trained my own support team.
To do this, I used a recruitment service and a self-directing service through a support provider. My staff are employed by the self-directing support service of a disability support service. However my staff are only contracted to work with myself. I do everything from interviewing, reference checks, induction and in house training. I have a key worker who completes some of my administration requirements for me.
Studio support
There are three main ways you can chose to have your support plan managed: 1) By the ndia; 2)Host funds provider; and 3)Self-managing. Note self-managing your ndis plan and self-directing your team are two separate things. a) Self-managing is around service agreements; budget planning; paying invoices and reporting back. b) Self-directing is employment of support staff or using contractors.
It is important to remember regardless of how your plan is administered, you should remain in control and you can choose the activities you engage in; the support services you access and the time you have to support. You and/or your advocate need to be vocal about what your support needs are and how you want your supports to be delivered.
Gardening is one of my hobbies
My support workers help me with gardening maintenance.
If you are self-managing the service or supplier you access doesn't need to be a ndis approved. So that might mean you are able to buy a grab rail for the bathroom at Bunnings (if that type of support is part of your ndis plan).
As a safety check you need to prove to the ndis that you have the skills to self-manage. As a small business owner and recipients of several art grants, budget and financial management are part of my daily life, I have never been bankrupt, so the ndis agreed I was up to the task of self-management.
For those who use the Public Trust, the adult guardian must be part of your ndis planning and in most cases the ndia will want to administer your plan. However, you are still able to choose the support services you use, and suppliers of equipment. However, if the ndis is the administrator of your plan you will not be able to self-direct and engage (employ) your own support workers).
If you choose to have a disability support provider to manage your plan, it is your choice what other services you access to provide your direct support services; (in-home support; respite care; and centre-based activities. The service that manages you plan, might offer other types of support, however you have the choice to access other services on offer or another support service to access your direct support needs.
You might think about choosing a support service that only provides plan management to separate the two types of support you require. A support service will always recommend (push) all services and want to offer you the complete package. This may suit you but if it doesn't let them know, you might want to attend one or more direct support services to stay in contact with friends. Each of your support providers must provide you with a copy of your service agreement, a quote of costs and monthly invoices.
If you intend to access several different support services, then you might want to access a support coordinator who can assist you to find the best support services for you and in understanding the service agreements and put together a weekly schedule. Or as I recently discovered there is a free Cozi App that you can enter all you appointments and activities into and you can track everything yourself. I use this app for staff rosters, events and calendars and all of my team can access the app.
If you are intending to self manage, you will not be on your own. Don't buy support services lines about risks and running out of money. Just like a business or service you too can access safe guards such as business and public liability insurance or you can find a host of apps and computer programs that will assist you in accessing all self-management including pay roll.
If you do self-manage you can choose which part of your plan you manage and what areas you don't want to do. I for example don't want to tackle pay roll. I already run a small business and I use an accounting program and an accountant to support me with my book work. I'm always behind and always have other things I claim I need to do. (and no I haven't done this years tax!!!)
Getting more practical I use the bulk of my 'core support' budget to engage my own support staff to assist with in home support and community access support. I need assistance with most tasks around the home, including showering and grooming, I also have an improved daily living budget I use for physio, OT assessments and assisted technology support.
The way I choose to use my improved daily living budget, is assisted technology assessments and physiotherapy; my core funding is used to maximise my independence and continue to live safely on my own (known as direct supports). My support staff do a lot of tasks that I might not be able to complete safely such as hanging out my washing, making the bed and the cooking. This will most likely be the opposite to other participants, as these skills can improve their independence and their outcomes.
My support workers also support me in my art studio. They set me up for a session, may provide some assistance during the art session and then clean up. They are able to complete these task more quickly and the gives me more energy and time to spend on producing stock.
However there is more to my business than painting, printing and creating. My stock does not fly to the shop by itself, it needs to be delivered. To exhibit and sell my wall art I need to apply for gallery space and plan exhibitions, have my work framed, edit my Etsy store, process invoices, order supplies and more. I have my key support worker to assist me with a lot of this organising even though I can do it myself. Well, maybe not carrying my artwork into the gallery.
Attending opening night of a group exhibition
Networking, working with other artists and supporting each other is a big part of my job. This is how I choose to use my community access direct support hours. I am well connected in the community and enjoy rich friendships, social support is not one of my support needs. However for others not as well connected to the community or those leaving school this may be the main type of support they need to build an independent life outside the family.
Other participants will be employed or choose to look for work so an employment service might be a good choice for them. I am not able to work for an employer due to regular seizures, though if I keep healthy and pace myself I am generally able to meet all artistic commitments.
Working with a physio has improved my endurance and fitness which has reduced the number of seizures meaning my work life looks much the same as other owners of small art and craft businesses.
The other type of support I need to access is mobility equipment. Even though I can now walk well. I would not have the strength to get through opening night without my wheelchair, even with it I wheel in the front door exhausted. For me accessing equipment and technology has been the most difficult and exhausting part of my ndis plan. Like my art networks I am constantly chasing a report, an invoice, a quote or payment and especially a response from the ndia on a report.
Overall good planning and knowledge has lead to the ndis having a positive impact on my life. At the start of the year I would not have considered walking around the garden without assistance, it is still difficult but life gets better for me all the time. There is no point sitting at home waiting for services and opportunities to come to you, you need to seek out the people and services that can assist you to reach your ndis goals.
