Who Cares for the Carers?
In the UK, 70,000 children a year are born with a disability. But while a lot of resources go into ensuring people with disabilities lead full and empowered lives, governed by their own choices, are we guilty of neglecting the unpaid carers who support people with disabilities every day?
Channel 4’s ‘Born to be Different’ is a documentary following the lives of six children born with disabilities since the millennium. The programme gives a rare insight into the effect having a child with a disability has on family life.
This month the series returned for its eighth season and we caught up with the Davis family who were trying to secure a place for their son David at a specialist residential school. David has complex autism and epilepsy and his mother Paula, who suffers from multiple sclerosis, is finding it increasingly difficult to cope. When the council initially refuse their funding application, a dispirited Paula says that she feels “let down by the system”.
It’s easy to sympathise, especially when we consider that a recent study by Carers UK estimated that unpaid carers save the tax payer £119 billion each year. Although some contest this figure, it is clear to me that we should be doing more to ensure unpaid carers receive appropriate support to deal with the financial, emotional and physical pressure they face.
One way to reduce pressure for carers is through short breaks, allowing time away from their usual caring role, but this isn’t a long term solution. What about the rest of the time? Do professionals need to do more when it comes to the welfare of unpaid carers?
Service users are united in their experiences of social care services, engage with people in similar situations on a regular basis and are encouraged to talk about their issues. Conversely, the wellbeing of carers is often overlooked and they are often left to deal with their feelings in isolation. Carers may experience feelings of anger at the injustice of someone they love having a disability, guilt that it may somehow be their fault, and fear about the future. What will happen when they can no longer provide the care that their loved one needs? It is important that carers can deal with these emotions appropriately. Signposting people to carer support groups is one way to help with this.
Engaging family carers can also be valuable as they are likely to know their relative better than anyone else – their likes, dislikes, skills, hobbies and aspirations. Asking people about these things helps to build trust in the service and a sense of partnership. After all, both parties are pursuing a common goal. Information from carers can save time and help build rapport between service users and service providers and help to empower carers who might otherwise be feeling overlooked and disempowered.
The dedication carers show to their relatives, the time they are willing put in and the perseverance they show is unrivalled. We shouldn’t be letting this valuable resource go to waste. When engaged and supported carers can do great things and often develop services independently. Engaging with carers from the outset can only result in better outcomes for the whole family.