As a mother and carer of a son with mental illness, I've spent years traversing the system seeking care and support.
Over the years I've tackled education, health care, family and community services, human resources and at times the legal system.
Despite the extreme frustration associated with these efforts, I've often been rewarded and provided with good outcomes for my son, myself and my family as well.
I now know that it's a very steep and long learning curve. After six years as a carer I'm familiar with 'the system' and can navigate these often complex organisations and community services.
Talking to other carers I've found that many of my peers are unaware of the services and supports that exist, or have experienced disappointing outcomes, lack confidence and at times have given up.
If you are applying for a benefit, seeking respite, or trying to obtain medical care, sadly there's no 'User Guide' or clear pathway through the system. So to help here are my four golden rules I use to make the system work for me.
Contacts, interaction and networking
Some of the best sources of information and advice come from people you talk to. You may be surprised at how much they know, or the friends and contacts they have. Don't be afraid to ask and don't limit who you ask.
Put your feelers out there and openly discuss your situation and what it is that you are struggling with or trying to do. Some of my most positive outcomes have come via advice received from people who have personal knowledge and experience, or links to someone they know.
Online resources and the power of communicating
There is a wealth of useful information on the internet. Search extensively using every variation of key words you can think of.
Read and become familiar with the government departments or organisations in question so you clearly understand what they can and can't do. Knowledge is power. The more informed and familiar you are with the structure, processes, laws, associated terminology and acronyms the easier things become.
If you do find an organisation that you think can help, then call or email them. If they are unable to help, ask if they know a more appropriate service. Don't limit communications to your local area and even consider interstate organisations. Despite the distance they may know of other relevant services.
Patience, persistence and thinking outside the square
Government departments and other organisations can be frustratingly slow and often require you to follow-up and be a little pushy. Being persistent pays off, but try not to become a pest. Understand that some things take a long time and exercise patience.
I've had to exercise patience waiting for a disability support pension application for my son to make its way through the system. As I type this it has been 6-7 months since the application was lodged and I am trying to be patient.
If you are experiencing unreasonable delays, or if you are not receiving the results you want, it is worth making regular contact and possibly trying a different approach. Consider getting advocacy from a GP, clinical psychologist, social worker or any other person or group.
Be fearless and courageous
Be bold and forthright in your approach when dealing with others. Speak assertively and with confidence. Homework on the matter will arm you with knowledge, which will give you confidence. Don't be afraid to ask questions and ask for assistance from anyone – be that friends, acquaintances, forum members, or directly with people within organisations.
I recently had to complete an NDIS plan for my son and did not know where to start. I reconnected with a Transition Support Officer from the School for Specific Purposes, a school my son hadn't attended for many months. She was more than happy to help and linked me to a disability support organisation that provided free pre-planning and worked with me to create a plan that met my son's needs. When it was time to find a Plan Management Agency I again found myself lost, so I reconnected with the disability support organisation and they pointed me to a reputable agency who now manage my son's plan.
As carers we often find ourselves being the administrator of everything pertaining to mental illness. It can be very difficult and daunting, as well as frustrating and disappointing. It is important to be as informed as you can possibly be so your loved one has access to the right treatment and support.
Remember that every meeting, application form, phone call, or assessment is inching one step closer to the result you want. With the passage of time, together with your ongoing commitment, you will have achieved the best you possibly can. Don't be discouraged by negative outcomes and remember 'If at first you don't succeed, try and try again'.
Julia cares for her son who lives with major depressive disorder and anxiety.