I read with great sadness the news of 3 children being found dead in their home last week. All 3 children had a genetic degenerative condition which was life limiting. The media have reported that their mother was struggling to cope caring for them at home.
As someone who has repeatedly asked for additional help caring for a disabled child, I have been persistently told that either, we don’t fulfil the criteria for more support, or we can have a little extra help for 6 months. But then I’ll have to drum up the emotional energy and find the time to apply again, when I’ll probably be told there is no extra support available. What this process does, eventually, is stop families from asking for help. Carers disengage and stop communicating with the services that are supposed to be there to support them. In turn, these support services are not aware of whether families are coping or not. Parents go on struggling in silence until they reach breaking point.
The Government needs to acknowledge the massive weight and sacrifice families make in caring for their disabled children at home or more and more families are going to stop coping. The huge cuts the Government have made in funding essential support services for families with disabled children has led to local authorities being unable to provide the respite and care that families so desperately need. Non Government funded charities who once could offer extra support services for disabled children and their carers, are now massively oversubscribed and are unable to meet demand. There is nowhere for these families to go for help.
Caring for a severely disabled child with complex health issues can feel like a life sentence. There is no freedom to live your life like ‘normal’ families. You cannot spontaneously visit friends and family, you cannot make any long term plans, you never have an undisturbed nights sleep and life is completely dominated by caring for your child and their needs. Going to and from medical appointments, and having long stays in hospital or intensive care becomes daily life. This is my experience of having one child with a severe disability. Multiply this by three and I can understand why it could become unbearable.