Friday 7 December 2007

Caring for a child with learning disabilities: a parent's concerns about the future

Full Story:
http://www.stopinjusticenow.com/News_0653.htm
Imagine you are experiencing domestic violence on a daily basis. The form this violence takes can vary, but usually it follows a familiar pattern: physical aggression including slapping, kicking, biting and things thrown at you. Emotional abuse is a regular feature too. Your sleep is broken every night; your eyelids are pulled open if you do not respond to the demands immediately. You witness your children suffer at the hands of the perpetrator of this abuse too: you can see tufts of hair growing out of your six-year-old’s scalp, replacing the lengths torn out. She no longer plays with toys – her favourite ones have been destroyed so many times that it is easier to not bother and to curl up in a chair and stare at whatever happens to be on the television instead. Friends no longer visit; members of your wider family who might be able to intervene live on the other side of the country and you don't want to burden them with your situation – they have health needs of their own. You begin to dread each day, never knowing if what you do or say will trigger another outburst. In a desperate attempt to reduce the stress you are living under and to minimise the violence and protect the rest of your family, you turn to the local authority for support. After numerous telephone calls and meetings they decide you are indeed a “family in crisis” and need support. What form would you expect this support to take – police investigation and involvement, a placement in a refuge, rehousing? No. The offer of support is for three hours per week respite with a support worker, a few days at a play scheme during the school holidays, and one overnight support a month “once a suitable family has been recruited” – with an admission that this is likely to take several months. Why? Because the perpetrator of these violent and aggressive acts is a child; your five-year-old daughter with a severe learning disability. The child and family support team, which offers advice and guidance for children with learning and behavioural difficulties, has a waiting list of several months for an initial assessment. Your family is falling apart; the future looks bleak, with no end to the situation in sight. What can you do? This was the situation that I found myself in a few years ago. As an experienced parent and qualified social worker, I was obliged to battle with my local authority for adequate support to keep my family together. I believe that responsibility for the nurture and development of children is the undisputed role of their parents. However, what happens when this role exceeds the norm, not by one or two years but by decades? The possibility of the situation I have described continuing for many years was, for me, untenable. And yet it is one which is faced by hundreds of older parents on a daily basis. In an attempt to make sense of the situation I was in, I questioned how parents of adults with learning disabilities cope. I know through my professional work that many older carers have lived in situations similar to my own for years, in many cases decades. I became interested in how they perceive their own support needs and how instrumental local authorities have been in meeting those. The 2001 Census shows that approximately six million people provide unpaid care in the UK. Research shows that one in eight of us will become a carer at some point in our life. This is a fluid group, as people move in and out of caring. However, this is not the case for parents of children with learning disabilities. An estimated 20% of adults with learning disabilities live with carers over the age of 70. The length of time spent caring spans decades and usually ends with the death or hospitalisation of the main carer. Research on the needs of such older parent carers is sparse. There is a gap in our knowledge about the needs of these older parent carers of adults with learning disabilities, and how support services, in particular local authorities, respond to those needs.

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