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The Journey towards Self-Management

Carolyn Campbell-McLean
Carolyn

Back in 2007 I worked as a research associate on an evaluation of the pilot of the self-management of Attendant Care. At the time I was using a traditional service provider for my care but I was interviewing people with similar needs to myself that were using brokerage models and self-managing as well as directly employing their care staff.

This got me thinking that it would be great if I could have more choice, flexibility and control over my own care and make it work better for me. But I definitely didn’t want to be concerned about tax, insurance, running a payroll and those type of financial/administrative issues.  I wanted the best of both approaches, I had been doing a lot of the work myself anyway but the provider was taking a large cut from my funding, with little support to me or the care staff.

So it wasn’t long before I switched from a traditional type of service provider to what’s known as a brokerage style arrangement.  At the time it was a huge decision, but honestly I haven’t looked back!  I use a financial intermediary or broker to deal with the administration of my care package, but I am in the driver’s seat – responsible for my own care arrangements. Yes, I do the work, but I am in control of my life! I moved from being a client (burden and powerless) to being an employer (empowered and in control).

Having my own self-directed supports has had many benefits for me. My brokerage agency is THE BEST service I have ever had. They are friendly, understanding, helpful and let you manage the service so it suits you. The board of the not for profit organisation are all people who use the care so they implement policies that foster good arrangements and ensure participants (rather than clients) are supported with their care.

This has resulted in happy support workers who are paid well and not given lots of paperwork or headaches by any type of “middle-men”. Along the way I have gained excellent skills in the process of managing my services, people skills, management, rostering, negotiation and so on. These can all be applied at work and in life.

Planning and day to day management

I do the rostering, recruitment (see separate story) and manage the support workers on a daily basis. My broker takes care of all the boring stuff like insurance, payroll and WHS. They are also very supportive of me in my role. They assist when needed but don’t interfere.

I do the day to day management of my team of 7 carers. What this means in practice is that I do a roster (just a table in a Word document – I’m sure there are other ways) every 6-8 weeks. This is based on each support workers availability and preference to work mornings, dinner times and bedtimes, weekdays and weekends. Support workers submit each shift via an electronic platform and I approve it.  After each fortnight the broker arranges the payroll. Voila!

It is very empowering to be in control of who is doing what and when – but this does take my time and energy. It takes negotiation and sometimes creative thinking if shifts need to be swapped or changed in emergencies. Support workers contact me directly if they are sick or have another problem getting to their shift. I can assess the situation, and because I generally know the commitments and schedules of each team member it is usually possible to find someone to pick up the shift. Sometimes I swap a shift, sometimes I offer a bonus if it is very late notice. I have started suggesting that the team swap shifts they can’t do – this has had mixed success. If I get stuck I have the numbers of a few agencies that are 24 hour contactable. I never rely on family to fill in, unlike the bad old days when I was constantly getting stuck without support, busting for the toilet or missing out on meals.

Training

I provide on the job training to my staff. I choose what is important to tell them, and I always train them up with one of my experienced carers. I am given 5 hours of training for each new worker, and this does not come out of my NDIS funding.

There has been a real gap in training for care staff who work with people with neuromuscular conditions (NMCs) but now I self-manage I can send them to conferences on NMCs, and get them to undertake specific online training related to my needs. Often my staff would come back after being trained by spinal injury focussed training with concerns about me developing autonomic dysreflexia (a condition common for people with spinal injury not SMA).

Self-directed model compared to traditional service model

I found that traditional service providers’ focus was always on support worker issues and WHS, often resulting in them sprouting reasons why they couldn’t do something. On the other hand I have found that with self-directed care the focus is on how I can make the system work for me, and I have a vested interest in making it work for the team – a real teamwork approach.

I value my attendants – our team meetings are at the pub – and we have a Christmas party. Previously when using a traditional service provider, I was not invited to the Christmas party. The power dynamic has changed in the relationships, my staff are now actively positive and trying to please their employer, in order to gain more Sunday shifts!

NDIS Self-management – the ultimate in choice and control of your funding

Under the NDIS the word Self-management specifically relates to the process of financially managing all aspects of your plan yourself. You can still self-direct your care and other supports using plan management and to a lesser degree NDIS management. And please note that self-management is not the same as directly employing staff (another article altogether). However, self-management is offering the most amount of choice and control over your funding and the supports it can purchase.

I started my first NDIS plan with everything being plan managed. This meant I could get used to the new system with support to manage my funding and pay my bills. For my second plan I elected to self-manage the Capacity Building – Daily Living (therapy) supports, to test out and see how hard or easy I found self-managing. I found it wasn’t at all hard for me to be invoiced for OT, go into the portal and make a ‘payment request’, and see the money appear in my NDIS bank account with 24-48 hrs, then go and pay the invoice online. I also needed to set up a good record keeping process – I use an excel spreadsheet and a good electronic filing system to record all claims and details, some people use Plan Tracker or Ability 8.

For my 3rd plan I went fully self-managed, and was fortunate to be funded some support coordination funds to get training and support to develop my capacity to fully self-manage. I engaged my broker to set up a detailed excel spreadsheet so I could track all claims and record the details. I also attended a full day Self Management training by The Growing Space. Self Management gave me maximal choice to purchase supports when travelling (accessible rental car, care supports OS) as well as being totally in charge of how I spend my funding within the guidelines of the Self-Management Guide.

Last year I was audited and I am pleased to say it was a simple process of providing the invoice/receipt for just 1 claim. I was asked by letter to upload the documents relating to 1 claim number into the portal. Much less arduous than I had suspected. Self-management takes me about 1 hour per week, but I would probably spend the same or more time in contact with a plan manager to make sure everything was correct, so I might as well do it myself! Being a savvy shopper and a bit of a control freak I really can’t imagine any other way! I would highly recommend it if you are able to pay bills online and keep records and reasons for your purchases.  It’s really quite common sense but I also strongly recommend peer support as a way of learning how to perfect the art of self-management!


Self-managing under the NDIS

Self-management in the NDIS is one way of financially managing your plan. It means you are entirely responsible for purchasing supports, budgeting your funding, getting quotes, invoices and receipts and paying the bills.


Carolyn Campbell-McLean is from the Parramatta area of Sydney and has a professional background in social work. Carolyn has worked for 12 years in state government education and training roles, has taught disability studies at UWS and TAFE, and was a research associate with the UNSW on the first evaluation of individualised funding in NSW in 2008. Carolyn experienced the sudden death of her husband Danny who lived with Duchenne MD in 2005, and is a strong advocate in the NMC community having held various roles as member, staff and Board Director of MDNSW over many years. More recently Carolyn has been supporting people with disability and the sector to prepare for change in her roles as a Living Life My Way Champion, trainer for Physical Disability Council NSW and Senior Facilitator at My Choice Matters’ leadership program. Now a Project Officer at Muscular Dystrophy NSW engaging the NMC community to create The Peer Collective, Carolyn is known for her peer support work including establishing the SMArties group. A proud Aunty with a passion for papercrafts, Carolyn combines her lifelong lived experience of SMA with a strong knowledge of self-management and empowerment tools for people with disability.

Carolyn has established her own disability and training consultancy.