Updated: Mar 29, 2019
My journey managing my disability support
My brother and I, who both have Duchene Muscular Dystrophy, have been self-managing our support for over five years. We have quite complex needs. We are both on ventilators 24/7 and therefore need someone with us all day every day.
To me self-managing has always been a journey that has taught me – and continues to teach me many things about myself and other people. To have the opportunity to self-manage my disability support is one of the best things I have ever done.
Learning to self-manage our funding
When we started self-managing, information and resources available to assist people wanting to go down this path was scarce. We met someone who had been self-managing for about two years and they gave us some good ideas and we went from there.
About six months into self-managing we moved our funding to be held by Bespoke Lifestyles. They offered training courses and consultants who are there to offer advice when needed.
Managing the responsibilities
I know it’s called self-managing, but you can’t do it alone. I’m lucky to be able to share the load of self-managing with my brother. We have our assigned weekly tasks.
I look after our:
· Rostering of supports and services
· Financial stuff (including budgets, accounting, wages and paying bills)
My brother manages:
· Our workers (including daily tasks, recruitment, organising training and staff meetings and appraisals).
We also pay one of our support workers a few extra hours a week to be our support coordinator. They help us with admin tasks such as:
· Writing memos
· Doing some of our computer work
· And are another point of contact for staff besides myself and my brother
This person is also on-call for our staff to contact if they are sick, so they can find replacements etc. Our support coordinator is also a good person for us to bounce ideas off.
Build a support network to call on
It’s also good to ask and have another family member or close friend, who is not directly involved in your day-to-day support, to discuss things with.
Sometimes when you’re having a bad day, or a worker has done something that has annoyed you, it’s good to have someone to vent to.
Self-managing is great, don’t get me wrong, but there are definitely challenges along the way.
Everyone in life has their daily household chores like cooking, cleaning, washing and the like. I’m unable to physically do much besides use my computer, talk and drive my wheelchair, so I probably spend an hour or two every day organising my chores on my computer.
You have to make sure you allocate time each week, so the tasks don’t pile up. After five years to me it’s just part of my weekly routine.
Another annoying part is sometimes I get woken up by an early morning phone call saying such and such is sick, and I can’t find anyone to work.
The downsides of self-managing
The worst thing about self-management is firing staff (which has only happened three or four times), and after interviews calling people to tell them they haven’t been successful.
In dealing with people I’m very much a treat people how you wish to be treated. Whether you have a disability or not, we all have good days and bad days, and I always try to keep that in mind.
Occasionally I need to be serious and when I am, I tell workers I need to put my boss hat on and take my friend hat off. It is not an easy thing to do, but sometimes I have to do what is best for myself and the team. But most of the time I’m pretty easy going, and like to have a laugh, because in the end I want my living space to be a friendly and welcoming.
I’ve made my fair share mistakes, including clerical errors and dealing with workers. Most of the time errors can be fixed, if they can’t be I do my best to learn from them.
What self-management has done for me
Overall self-managing has been and continues to be a rewarding experience. It has improved my sense of worth, which has given me more confidence.
It’s not always easy but like most things if you persevere, and don’t lose hope you will succeed. Personally, after experiencing the freedom and control self-management has given me in my life, I couldn’t imagine ever going back to a service provider model.
Over to you
For many people, the NDIS is the first opportunity they’ve had to take control of their disability supports and they may be uncertain about whether they can do it. But it’s important to remember that even though it’s called self-management, the NDIS is designed to give you the tools to enable you to have choice and control over your life and support.
If you’ve never self-managed, what support and services would you need to help you do it successfully?
Or, if you’ve self-managed before, what benefits did you see in your life? What challenges did you overcome?
Let us know in the comments below.
My name is Scott Harry. I'm 42 years and have always tried not to let my disability define me. I represented QLD at Powerchair football and hockey for 19 years and was on a number of different organising committees. I worked assisting an Accountant for 4 years, and have always loved going to watch team sports and motor sports. I lived with my parents until I was 30, then had some very challenging experiences when I moved into a group home for 5 years. I now self-manage a team of 13 support workers with my brother in our own community housing home on Brisbane’s north side. I’m very keen to spread the word on how self-managing has transformed our lives, and am always happy to talk to anyone thinking of going down the same path.