National Carers Week – Why Do We Care?

National Carers Week has been celebrated in Australia since 1992. It aims to recognise and celebrate the significant contribution that unpaid carers make to the Australian community. This year the theme focuses on the stories of carers asking them the question –  Why Do You Care?

1 in every 8 Australians is caring for a family member or friend with a disability, mental illness, long-term health condition or who is aged. There are about 2.7 million unpaid carers across Australia who provide approximately 2.2 billion hours of care every year. If this care were to be provided by paid carers, it would cost more than $1.5 million – per week. 

The 2020 National Carer Survey makes for some very stark reading. Of the carers who responded 

  • 57% are women
  • 25% are caring for someone with autism
  • 59% do at least 40 hours of caring every week
  • 53% have been a carer for at least 10 years, some for more than 25 years
  • 43% never get any time out from their caring role
  • and for those who do get time out, 81.5% spend it planning and thinking about the care or needs for the person they care for

One of the most significant consequences of being a carer is the impact on employment opportunities. Around 43% of carers are not in the labour force. They are not counted in the unemployment figures. Many of them are not even looking for work. Some of them have probably just given up. It’s simply just too hard. Its hard to find flexible work that can be scheduled around caring responsibilities. Once carers have spent many years out of the paid labour force, their skills and qualifications are out of date and it’s very hard to transition back into the labour force. More importantly, the hours of caring and the constant mental load leave them physically, emotionally and mentally exhausted. 

When the NDIS began to be rolled out, some carers might have hoped that this would help improve their employment opportunities but this has not been the case. Almost half of carers reported that NDIS support did not help them either stay in work or free them up for employment. Managing the NDIS plan for your family member, especially if they are an adult child with an intellectual impairment, is practically a full-time job on its own. It is complicated and always changing. It involves constant communication with service providers and endless meetings. And carers wonder who will do this when they are no longer around.

For the 2.7 million carers across Australia, these are not just statistics. This is our lived experience. I have been the primary carer for Dan for more than 20 years now. For some of that time, while Dan was at school, I was able to participate in the labour force but it decreased dramatically once he finished high school. This was before the NDIS, when disability funding was pitiful. We eventually moved to Toowoomba for better access to support services for Dan. It has been the best decision for Dan and I don’t regret that for a minute, but I had to give up my job. We had no family in Toowoomba and no social network. We had to start again. 

I too had hoped that once Dan was in the NDIS, employment opportunities might be easier. The NDIS has been great for Dan. There is no argument about that at all. He is having many more opportunities for social and community participation than he would ever have had before, BUT it takes an enormous amount of time and energy to organise and manage it all. In the meantime I have been busy studying. Studying online is flexible and I can work it around Dan’s needs, and I had hopes that one day it would help me to transition back into the labour force. 

And then Covid-19 happened.

NDIS plans were thrown in the air. Service providers had to cut programs and strict social distancing regulations meant most support was now impractical. Dan was home for three months with no support. I worked out that it had been probably 20 years since I had been responsible for him 24/7 without any break at all for such an extended period.

 Still, I have been fortunate. Dan was able to access child care to assist with his social development and since his diagnosis of autism we have always been able to have some respite no matter how limited it may have been. We did have family support when we lived out west and once Dan entered the school system, well, we just had to cope with the school holidays.

 However, there are many aged parents who have been caring for their disabled adult children for years on end without any break at all. I met some of them in a workshop I attended prior to the roll out of NDIS in Toowoomba. In preparation for accessing the NDIS we were all supposed to have received a letter. Some parents had never received this letter because they weren’t even listed in the system. In Queensland, that was Disability Services Queensland. These parents were in their 70s and 80s, still caring for their middle-aged children. If you are not in the system, you get nothing. No access to support services for your family member. No respite or counselling services for the carers.  I wonder how they did it for all those years. I suppose when there is no alternative, you just keep going, until the day comes when you cannot do it any longer.

I don’t want that to happen to Dan. I don’t want there to be a traumatic upheaval in his life when the inevitable happens. The three months without support showed us something – that we cannot keep providing the daily care for Dan forever. Dan is a very healthy and physically active young man, and sadly, I’m getting older. I can’t keep up with him anymore. So we have started the transition process into supported independent living for Dan. It’s another steep learning curve finding out about the different kinds of accommodation funding that you need and the various assessments and reports that need to be submitted to the NDIS. But we are hopeful. 

Dan is ready. He really enjoys his respite weekends and has been expressing his frustration with life at home. Apparently Mum is not such exciting company anymore. And that’s the way it should be. 

But that won’t be the end of the caring role. I have been warned to expect that a high level of involvement will still be required to ensure that the day to day care for Dan runs smoothly. There is a lot of information to pass on. Workers have to be trained to recognise Dan’s non-verbal cues and to know his routines. They also need to know how his communication program on his iPad works. And this will need to be repeated whenever there is a change of staff. 

Caring for a loved one with a disability or long term health condition is a heavy responsibility and it comes with a heavy price tag in terms of employment and financial stability, physical and mental well being, and social participation. There are long-term effects on our own physical and mental health which often gets pushed aside. Why do we do it? Why do we care?  Because we love.

 Sadly, despite all the hours of unpaid care over many years and the public campaigns to recognise the contribution of carers, less than 20% of carers feel recognised and valued by the Australian and State Governments. 

Anybody can become a carer. 

Any one of us might become the person who needs to be cared for.

Carers need to be cared for too. 

You can read more about National Carers Week and check out some of the carer stories here.

8 thoughts on “National Carers Week – Why Do We Care?

  1. Thank you Karen for helping us to better understand the situation. I was particularly taken back by the information that there are elderly folk still taking care of their middle aged children, people that still aren’t in the system. Should this be something that GPs compulsory report on I wonder ?
    PS You are doing a wonderful job. Be kind to yourself 🙂

    Liked by 1 person

    • The issue of elderly parents not being in the system was certainly the case a few years ago and is probably one of the reasons that the numbers “expected” to access the NDIS was well below the actual number of disabled people in the community. Accessing information has always been a major issue and you often only find out about services from word of mouth. I would be hoping that the NDIS, having such a visible presence, would change that. People still have to want to access support and asking for help can still be the biggest step.

      Liked by 1 person

  2. I wish we had a much more empathetic and engaged society that valued the work done by those who step in to care for children, parents and even partners who need that extra care. I hoped the NDIS was the beginning of a change in attitude but I think we still have a long way to go.
    I think we all need to be more aware and supportive in any way we can and we should all realise that sooner or later we will ourselves need care if we are lucky enough to live long lives.
    Sharing stories is a great way to increase awareness and bring about positive change.
    How exciting for Dan and you to be moving towards greater independence, you should be proud of the job you have done. The world would be a horrible place if it were not for the love and dedication of family but no one should have to do it alone, especially as they themselves get older.

    Liked by 1 person

    • Thanks Sharon. None of us know what the future holds and our lives can be upturned in a split second, putting us in the position of carer or to be cared for. There’s a bit of a way to go yet, but we are looking forward to Dan having some more independence and having a more normal parent-child relationship, whatever normal is.

      Liked by 3 people

  3. Karen, thanks so much for posting this. I have chronic health and disability issues myself as well as being a carer of our son who has mild Asberger’s which exacerbates under stress, especially when my health flares up. My husband if official carer for both of us.
    I have a few friends with kids on the Autism Spectrum who are non-verbal and high needs. My aunt also has a brother who is signiciantly disabled and still living with her parents who are elderly and things are difficult.
    The thing that people outside this community often don’t appreciate, is how much these people are loved and valued by their families. Outsiders tend to see all their weaknesses without appreciating their strengths, capacity to love and be loved. Just because of their disability, their existence is often questioned, and yet you look at that beside people who are selfish, ruthless, criminal.
    The NDIS stresses me out a lot and I’ve found it very difficult to have my needs acknowledged and I seem to get a new LAC every year. Pre-covid, I was getting pretty good support though but like you we cut it out for a few months and have only reinstituted minimal support.
    It sounds like a good idea to get your son into a community house where you can both gain more independence.
    Best wishes,
    Rowena

    Liked by 1 person

    • Yes, I think NDIS has become a new four letter swear word! It’s absolutely necessary and yet so frustrating and stressful. We have finally been able to get a coordinator and that has made a lot of difference. It’s been great to have someone else to run around and get the information and liaise with NDIS on our behalf. It only took 3 years to get one! Hope things are able to work out better for you soon. Take care

      Liked by 1 person

      • Fortunately, my situation is going better atm and so I’m not as dependent on help or the NDIS as I was. I’m glad to hear you’ve got a planner, and that’s making such a difference. You can’t understand this crazy world unless you’re in it or know someone close to you in it. We need to keep fighting and I think it is improving and hopefully community is becoming more aware of disability issues and inclusion.

        Liked by 1 person

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