The impact of being a carer for a child or young person with a disability

And what ACTG carer support can do

At ACTG, when delivering disability supports services we focus our support on the whole family system, rather than just the individual. Over the past year, our delivery of disability carer support services has provided much needed support to carers across Victoria, NSW and the ACT.

CEO Monique Blom reflects on this service provision and provides some insight into our clinicians’ approach.

Over the past year ACTG has diverted much focus on the delivery of disability support services to carers across Victoria, NSW and the ACT. Life is never straightforward for mums, dads, grandparents, brothers and sisters of someone with a disability whose behaviour challenges. Caring for someone you love can have a huge effect on your life, both positive and negative.

ACTG staff often note that carers reflect that the child or young person is the focus of everything, leaving them little time to step back and think about they are doing or what they might need to continue to support the child or young person.

When a child or young person lives with a disability it can be really difficult and isolating for some carers. It can feel like being on an emotional roller coaster, with feelings of sadness, guilt, regret, fear of the unknown and even embarrassment (what will others think). Feelings like stress, frustration, anger, guilt, shame and loneliness are all-natural reactions to the way a child or young person’s disability can affect a family member’s life and that of carers. These feelings are not easy to talk about. Many carers say that no-one understands how they are feeling, so seeking support from other families with similar experiences, and professionals who have an in-depth and empathetic approach to disability can really help.

We have been engaging in some action-research at ACTG this past year and have noted an array of unique challenges that face carers of children and young people who have a disability.

  • Relationship breakdown is unfortunately more common for couples whose child’s behaviour challenges. The normal family stresses are heightened when a member of the family has complex needs, and extra strain is put on couples to be consistent in their approach to behaviour, to find time to talk and have time alone together.
  • Sleep is a huge difficulty for many families, as children and adults with disabilities often don’t have ‘normal’ sleep patterns so can disturb the rest of their family during the night. This is often a hidden problem and others may not realise the huge effect lack of sleep has on a carers day-to-day life. Being tired all the time will also have an effect on a carer’s ability to care.
  • For all the time and effort carers spend getting children and young people to specialist appointments and worrying about their well-being and, health, many do not spend adequate time thinking about their own health. Caring for someone can be physically demanding and exhausting, and stress related illnesses appear more common in carers.

Despite this, we see an overwhelming number of carers who have embraced their care role, noting that the child or young person’s disability brings many positives to family life. This ranges from the sheer pleasure of spending time with them and seeing their achievements, to new experiences and opportunities for the family unit. Additionally, many carers become tougher and more assertive, as well as more understanding and kind.  We have witnessed carers develop new skills in communication, organisation, and even creativity!

Carers may have a specific concerns or wish to explore elements associated with their role as a carer/s of a child or young person with a disability, some of which can be challenging.

Some issues in that might be explored in our carer support sessions are as follows:

  • Stress, and anxiety;
  • Changing relationships and roles;
  • Practical understanding of trauma and caring from a trauma-informed perspective;
  • Managing conflicting demands and emotions; and
  • Applying in practice the recommendations of a Positive Behaviour Support Plan.

As with our other services, ACTG carer support service activity can happen via face to face or via telehealth. Our carer support services aim to provide carers with emotional, psychological and behavioural guidance. Our clinicians are all telehealth accredited and aim to provide support within a safe, independent and confidential context in which carers can talk about their concerns, feel listened to, respected, understood and not judged.

Monique Blom